Nicholas Shannon

Little Teachings

2011-11-09T21:59:00.010-05:00

The weekend of 10/21 we were at Hole in the Wall for a family General Weekend. In the past we have been there for Oncology family weekend. The weekend was absolutely amazing and one of the best times we have had together as a family. As always before Greg & I leave we talk about ‘all’ the work that has to be done around the house and cleaning up. We know we are going for the kids but by the end of the weekend we always realized this is what WE needed. Driving into camp you feel the positive energy and just serene surroundings around the lake. The kids were already unbuckled and ready to jump out of the car. We stayed in Lulu’s Lodge, which is where the counselors stay over the summer. It is a ski lodge feeling with a fire place. Our 2 family pals came to greet us immediately. Nick took one look at Brandi and said: ‘I know you, you were in my cabin over the summer.’ Turns out, Brandi was one of Nick’s counselors during his summer week. The two of them started talking about the summer camp and how much fun they had together. It was the first-timer for our other family pal, Deb, to come to Hole in the Wall. The kids laughed, danced and even sang on stage. Sat. night was talent show night our boys were a star. Nick played piano, Colby played ‘mary had a little lamb’, then did armpit farts and then sang Dynamite…. All by himself. Tom got up with all the kids and danced at the end. Tom even got to drive the pontoon boat in the lake. (not docked). On Sunday, the host (Hillary) offered anyone to come up to the mike and say a few words before we departed. Colby ran up and said he would miss everyone and you could see the first tear in his eyes. Nick yelled ‘camp rocks’. Nick made over 7 woodshop projects and Colby made 7 arts and crafts project. The good news is that the kids (Nick & Colby only) go back for a kids reunion in November together. We are so fortunate to have a place for us to go to, where we all understand each other and have a chance to just be yourself. Greg has said many times: ‘I wish Eileen and my family had this place for us to go to.’

This coming weekend there will be a mass for Eileen to worship her 30th anniversary since she passed away. Eileen, (Greg's sister) passed away from Renal Cell Carcinoma.

Colby and Nick have a re-union weekend planned at HOP for the 18th. They are looking forward to going to camp together for the weekend. I explained to them that they should take their projects with woodshop and arts&crafts and give them as Christmas gifts. We will see their imaginations......

I came across an email I sent to the Doctor at Dana Farber who was conducting Nick's study/protocol. I know I was frustrated at the time I was sending but also appreciative he responded to me. Nick's treatment was through the Tomorrow Fund Clinic at Hasbro Children's Hospital but the doctors work with Dana Farber on the best possible treatment......

-----Original Message-----
From: kgshannon@comcast.net [mailto:kgshannon@comcast.net]
Sent: Monday, March 23, 2009 8:47 PM
To: Silverman, Lewis Barry,M.D.
Subject: ALL T-cell

Hi Dr. Silverman,
My son, Dx 10/15/08 with ALL T-cell is 4 years old. He is on the DFCI #05-011
clinical study. We are half way through the Consolidation phase II. (15 shots
of asparaginase and 5 rounds of chemo doses, every 3 weeks). With the last dose
of chemo, my son experienced extreme pain in the legs and could not walk. The
pain has subsided, but he still can not walk well. He drags his right leg and
is very unsteady. We are concerned about the Vincristine causing this and
possible permanent damage. Have you seen other patients, on his study, going
through this as well? We are concerned about nerve damage as well. Do you have
any advice for us? We appreciate your help. Thanks.
Nicholas Shannon, out of Hasbro,
RI Hospital.

From: "Lewis Barry Silverman,M.D."
To: kgshannon@comcast.net
Sent: Tuesday, March 24, 2009 7:11:10 PM GMT -05:00 US/Canada Eastern
Subject: RE: ALL T-cell

Hi
I am sorry to hear your son has had issues with leg pain and problems walking--I
hope he is otherwise doing well.

Pain and abnormalities walking are not that uncommon and can be due to many
causes.

Leg pain can develop for many reasons during this phase of treatment.
Sometimes, children experience a lot of muscle pain with the dexamethasone they
take; often, this pain is at its worst when they stop the 5-day steroid pulse.
Usually that sort of pain might be prevented if the dexamethasone is given with
a taper for the last few days rather than just stopped at Day 5. Dexamethasone
can also make the muscles weak.

Dexamethasone can also lead to bone problems which cause pain. This type of
pain would be localized to a bone or joint, and usually persists throughout the
cycle. An x-ray or other scans would be needed to diagnose that problem.

Vincristine can cause problems with walking--usually the issues related to that
involve difficulty climbing stairs, awkward walking, tripping and in worst case
scenarios, inability to walk alone. Often these gait problems are not
associated with significant pain. Vincristine can cause pain--but usually this
is described more as burning or pins/needles in the feet--and that is much more
often seen in teenagers than in a 4-year old.

Most of these issues are not permanent, though some of the bone problems caused
by dexamethasone can be. Even the worst vincristine issues tend to be
reversible, though they can take a long time to improve.

It is difficult for me to know what the cause of your son's pain and problems
walking are without seeing him. Your son's oncologist may have a better idea of
what is going on after he examines him and decides whether or not any testing
might be useful. Ultimately we want to try to give as much chemotherapy as we
can to cure the disease, but modify doses, when necessary, to avoid doing too
much harm.

Sincerely,
Lewis Silverman

3 Years Ago

2011-10-17T13:05:00.003-04:00

It has been a while since I last updated and everything is going well at the Shannon household. Three years ago from Saturday is when Nick was diagnosed. We will remember this day forever. We are blessed to have treatment finished and no major side effects has come through treatment. It can always change on us, but we are enjoying our one day at a time. I am not sure how much longer I will continue to blog. The purpose of it over the years was to keep family and friends up to date with Nick's progress. I feel we have been very open with our family stories and it's time to focus on the kids and their personal lives. The people who know us, will understand our lives and know how happy we are now. Thank you for reading, Karen

2011-09-13T14:05:00.002-04:00

Childhood Cancer Awareness Month

Although we see great strides in Nicholas and how he is thriving right now, there are many kids not as lucky as him. I still read many blogs about families going through cancer and my heart sinks everytime you learn one child did not make it. I feel like the one sitting back and not helping right now. Hopefully by spreading the word about childhood cancer I can help in some way.

Did you know?
•More than 12,500 young people are diagnosed with cancer every year.
•Each year 2,300 children and teenagers die from cancer.
•36 children a day are diagnosed with cancer.
•1 in 4 elementary schools has a child with cancer.
•1 in every 330 Americans will develop cancer before the age of 20.
•Cancer is the leading cause of death by disease in children under the age of 15.
•The causes of most childhood cancers are unknown.
•Childhood cancer occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
•In the United States, the incidence of cancer amoung adolescents and young adults is increasing at a greater rate than any other age group, except those over 65.
•Although cure rates have increased to 80% from 35% over the last twenty years, childhood cancer is vastly under funded

The Littlest Soldiers

The medals on our chests
Are port-a-caths for meds
Helmets won’t stay on
Cause no hair is on our heads.

Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play.

We fight with honor and courage
No marine could do as well
We are only little children
Living in this hell.

So bring on the medals
The Purple Hearts of Wars
The Gold Cross, The Silver Star
To place upon our scars.

For We are the Children of Cancer
No one has fought so hard
But every day we struggle on
Our LIFE is our reward

~author unknown

Hole in the Wall Gang Camp for Colby

2011-09-01T09:42:00.002-04:00

Colby had a blast at camp. He made new friends and really enjoyed 'his' time there. When we dropped him off he told us that we could leave as soon as he was in his cabin. He made the most of his time and they even had a 'surprise' fire works night. Colby was excited to see us when we picked him up but I also think part of him wanted to stay. On our way back to the car, Nick & Colby started singing camp songs together and talking about each other's experiences, the counselors and friends they made. The moment for me was surreal in a way. We are so proud of them and having the opportunity for this experience. It is one they both will remember.
When we got home, Colby went and took a shower. When I checked on him he looked really upset. I asked him what was wrong and he said: "I miss my friends already. I wish I could see them again, I had so much fun." Another successful week.

For our final summer vacation we are heading out to Camp Sunshine tomorrow. The boys have been asking when we can go again and the only weekend available for us was Labor Day. I am looking forward to the trip and the kids enjoying their camp time. This weekend's theme at Camp Sunshine is 'Oncology Off-treatment program. I am looking forward to the group discussions and learning how other children are doing off treatment. My particular interest is in the side effects from chemo and radiation and wondering if kids are experiencing this.
I know I have said this before but we are truly blessed to have Nick off treatment and having the ability to be a normal kid. The 'C' word will always be part of our lives but Nick has conquered it so far and he keeps enjoying his life.
Nick's clinic on 8/18/11:
WBC: 10.4 -normal
RBC: 11.8 -normal
Plts: 340 - normal
ANC: 4,500 -great
The doctors say all the chemo is out of his body now. I have asked about re-immunizing him because we do not know for sure if the chemo has killed his immunizations. The doctor said they typically do not re-immunize because they do not know the facts about it.
-Karen

Nick's Home from Hole in the Wall Gang Camp

2011-08-09T13:04:00.003-04:00

Nick attended his first week ever of sleep over camp. He did great. Greg & I picked him up this morning. We were sent to the dining hall to get him and when we walked in Nick was dancing (w/one of his councilors) to the music. We both just watched him and he was still so happy. Once the song was over, I ran over and hugged him. Tears were, again, in my eyes and he was just smiling so brightly and hugging me tight. The councilors had so many positives things to say about Nick and I told them I was looking forward to hearing all about his week on the way home. In true Nick fashion, he did not dissappoint us. He talked the whole way home about camp. There were so many activities that he had opportunity to do this past week and most importantly, he made lots of friends at camp. He rode horses, swam, caught a bunch of fish, theatre, carnival night, woodshop and so much more. He told us funny incidents that happened during the week with the councilors and his friends.
Here is one of his stories: "I caught Lucy, no lips fish. See, the first person who caught Lucy,had the hook on her upper lip and her lip came out. the second person who caught it had the hook on the lower lip and it came out. I caught her on the cheek but you know, the lips will grow back on Lucy."
Another one: "The sad part of camp is once you stay in cabin 15 (the last one), you can no longer be a camper." Nick was in cabin 1 and he has 8 more years before that will happen. We explained to him that he could be an LIT (Leader in training) after that.
He also learned how to TP (yes, toilet paper) the cabins. He said he could throw the roll really good over the cabin. What 7 yr old knows how to do that these days? He kept saying "I can TP really good."
A week from Sunday we will be driving Colby to camp (siblings week) and Nick is already excited to go back and see his councilors. We know Colby will have a wonderful and exiting experience, just like Nick.

We are Back

2011-07-26T22:26:00.004-04:00

We are back from vacation and had a great time. The kids were great. We drove to North Carolina to see my sister, Christa and family. The kids really enjoyed spending time with their cousins, Justin, Luke and Kaitlyn. We went to the pool everyday and a couple of highs: Nick jumped off the high dive, Colby doing flips off the low dive and Tommy enjoying the trampoline everyday. The older boys enjoyed taking a ride on Uncle Mark's motorcycle. The kids woke up late everyday.
On Thursday we left and headed to Hershey park in PA for 2 nights. The first night was very adventorous for us. As we were leaving our room to go to dinner the boys were running down the hallway and took a quick right hand turn. My older son turned back and by accident pushed Tom into the corner of the wall. He ended up with a huge a gash on his forehead and to the ER we go. After 5 hours he ended up with 3 stitches inside and 5 on the outside. I think I have really lost my patience at the ER. Tom was bleeding and no one even came to look at him for over an hour. I believe it is just the thought of being there again. Greg took the boys to dinner and then took over 2nd shift so I could take Colby & Nick to Hershey Park for the nighttime premiere. Eventhough it was a set back for us, we still made the best of the trip on the next day. Nick's diagnosis has taught us so much and under the circumstances with Tom, Greg & I were very calm. The boys had so much fun at Hershey Park, even in the 103 degrees temperature. We ALL, as a family, rode a roller coaster together and many other rides.

8/3/2011:
We just dropped Nick off at Hole in the Wall Gang Camp for his first time at a sleepover camp. He was very excited today and definitely not patient waiting to go through the line and checking in with the doctor. Once he got to his cabin and met his roomies he was so happy. He gave us great big hugs and his smile told us everything would be just fine. I, of course, cried and luckily I had my sun glasses on so he would not see my tears. I think they were tears of happiness for him, knowing he is going to have fun but also missing him this week. Hole in the Wall is magical and Greg & I feel safe about nick spending the week there.

Quick Story:
I was out of town the past two days at a charity golf tournament for my work. The company we supported has the charity event every year and part of their donation goes to Hole in the Wall. So last night, at the dinner, after golfing, I was able to meet some of the top people at Hole in the Wall that make it all happen for these kids. Of course they remembered Nick from family weekends and were so excited to hear he was attending this week. You really feel part of their family. I will blog next week about his experience. I already packed a goody bag for him that I am mailing tomorrow and plan to mail a couple of letters to. I already miss the little guy so much......Karen

Off for Vacation

2011-07-12T10:08:00.007-04:00

Nick had his 6wk clinic visit. I booked the appt. with our actual Oncologist doctor. In the past we have been the nurse practitioners because we go on Monday and our doctor is in clinic on Thursdays. I am glad I made the appointment with her and she answered all our questions and made us feel at ease. Nick has lost a pound and he does not eat a lot. The doctor mentioned that she sees kids actually keep eating once off treatment, as a habit. He did grow .25 of an inch so there is not a huge concern about his height & weight. Everyone has mentioned to us how different he looks now.... he looks like a 7 yr old boy, so we just need to work on him eating some more. We also brought up fatigue and his muscle strength but again, as we move forward he should improve on this. His were ALL normal:
WBC: 11.5
RBC: 4.17
Plts: 359
ANC: 3,000
We go back in 6wks again.

We are so lucky to see how well Nick is progressing but cancer never leaves my mind. A quick story. I was at Whole Foods the other day (a place I do not go to often) and as the woman was ringing me out at the register I noticed they were taking donations for Make A Wish Foundation. I decided to donate and the woman was so excited and stated that between Whole Foods and their customers they are trying to send a child from Bellingham on a wish trip. I explained to her that I am a Make A Wish Family to and how much our trip meant to all of us. She said to me: "My son passed away from AML and all he wanted to do was see Mickey." They took their trip and had a wonderful time. The woman then said to me: "When we got home, my son said to me, now I will prepare you, for when I die." The boy was 5 when he passed away and the mother said she started the Make A Wish donation at Whole Foods so she can give to other children. She showed me pictures of her son and she was smiling through our whole conversation. (as I was trying to hold my tears back). I of course lost it by the time I got to my car but knowing another child will receive their wish is comforting.

We are leaving this Saturday for our vacation to North Carolina to see the Wykoffs (Karen's sister and family). We are driving down and really looking forward to the cousins spending some time together. We have not been in over 3 years due to Nick, so this will be fun. We will stop at Hershey Park on the way and spend 2 nights there. The kids are very excited and Greg & I are looking forward to family time.

The Results are In

2011-06-28T15:50:00.016-04:00

Hello,
I know I have not posted in a while. I think about it everytime but then something else comes up like hanging with the kids or playing outside, so I think my excuses are pretty good. Greg & I had our appt. today with Dr. Selke -- Pediactirc Neuropsychologist to receive Nick's results on his testing.
Many people have asked why is this test being done and what will we get out of it. When Nick was treated for Leukemia he received radiation (8 days of it) and high dose chemo. There are many side effects from both which can lead to brain deficiencies, such as cognitive skills, comprehension, fatigue, etc.... Nick was in testing for a full day and they were able to complete the whole series of tests. I will first start by saying Nicholas is VERY smart and we are so proud of him. His total IQ number did drop from 124 to 113. Anybody who knows about IQ testing is aware that there are varying degrees in the actual measure (ie:number) that each test uses. His testing is in the range from 1-145. We are satisfied with the results and the areas that Greg & I thought he would need help, did show up on his tests. Our concerns were correct and we still have to accept the fact that there is side effects from everything his body/brain went through. As the doctor states... we saved our child by treating him with chemo and radiation, so we take the side effects and work through them. Nick is showing the 'common' signs from radiation. Here is the breakdown to make it more clear:
- 8 hours of testing -- the dr. uses activities to work on different areas of the brain
- During testing Nick was fatigue by 11am and in the early afternoon by 3pm. The tests going on during this time was not 100% dx due to fatigue
- Nick did drop or show slow response to comprehension & motor skills

The Dr. said he is working on a study where fatigue actually continues through during his delvelopment phase of life. Greg & I always thought Nick would be back to his original energy level and now studies are proving that is not the case. While we see improvement in his energy, he is still not there yet and we do not know if ever will be. He may stay awake all day and play but activities such as baseball can wear him out quickly. We have seen this on the baseball field. He takes a few swings and then he complains he is tired....Of course we try to encourage him and keep telling him to try but in reality his brain/motor skils are slow and tired. Just something we, as parents, need to watch as time goes by.

The big question I asked the Dr. was if Nick would ever re-gain or improve on these skills in which he has shown a decrease in. The Dr. explained it to me like this: Your brain cells (white mass growing around your nerves) grow until about the mid20's and if a normal child is at 100% motor skills and then becomes sick (like Nick), those cells could drop down to about 75%, with radiation killing the 25%. He will never get back to 100% but he can maintain or drop where he is today. So our goal is to continue to challenge Nick and focus on these areas to keep his level of 'smartness' up.

I will post more on this next week when I receive the actual paperwork. The Dr. had some updating to do on his medication sheet of the report and will be sending it out to us. The meeting was very overwhelming for Greg & I to learn just the terminology and then apply it to the exact behavior going on in his brain/everday functions. The testing Nick endured was very draining for him but it is so important to work each part of the brain. The Dr. is not instructed to tell us how to handle the coming years but we have a better idea what we need to do as parents. More details on next blog. Sorry if this is confusing reading about it... I am trying to process everything that was said and also dissect what is the priorities for keeping Nick on track.

On a very happy note: Thomas turns 3 on July 3rd. He has grown up so much and barely looks like our 'baby' anymore. The years pasted by so quickly for us with Tom and missing him during Nick's treatment. I think he has become more independent than the other 2 because of this. He is our little 'madman' in the house. Mom & Dad love you very much Thomas!!!!! We are celebrating this year with a big Mickey Mouse Cake.

Neuropsychology Test

2011-06-10T08:44:00.004-04:00

Nick had his IQ test on Wednesday. It was a long full day of testing and he was very exhuasted by the end of the day. The IQ test is done because Nick received total brain radiation back in December of 2008. It was part of his protocol to treat his leukemia because it had spread to his brain/spinal (CNS) when dx. Radiation can cause long term side effects such as learning disabilities, tiredness and can even lead to new cancers. Our goal was to treat the leukemia and you deal with the side effects later. Nick is healthy but he will continue to have follow up neuro testing done to see how he is progressing. The good news is that he was off the charts smart back in 2008 and the doctor said you will probably see some decline but hopefully not a lot. Nick missed a lot of school in Kindergarten and some in 1st grade so that can contribute to it as well. The testing will give us guidance if we should pursue a tutor for the summer and where we need to focus on for 2nd grade. Nick was a trooper during testing, he wanted to go home many times but he continued with it. I had to bribe him with Go-Gos, but he made it through.
This weekend is his last baseball game. I think he likes socializing on the bench more than playing, but that's okay because at least he is out there and being a kid again. I can't believe it has been 7 months since Nick finished treatment. It still amazes me and I have not forgotten everything he went through. I stopped in at clinic while Nick was in testing to make an appt. for his next blood work and I saw so many kids in the waiting room.... battling some disease. It breaks my heart to see these kids knowing the battle they are facing. Please continue to pray for all the kids who are battling this disease. Take Care Karen

All Medication is completed

2011-05-23T13:21:00.004-04:00

Nick is completely done with all medication. He finished his Bactrum last week. I think he was happy about it. When I told him last week that he had finished all his 'clinic' meds he said 'great'. I do not think it really phases him, everything he has been through and how proud he should be to finally finish. He has moved on to being a 7yr old. He likes baseball and just picked up the basketball yesterday to try and play. He typically sits out of playing sports with his friends and I believe it is because he feels like he can not play or is not the fastest person. He knows the kids are better than him. We keep encouraging him that he will learn the game and to keep trying. I really believe he does not feel as strong as he looks. I know he tires easily but he will push himself when he wants to. We are fortunate that this is our 'biggest' concern. There are so many kids who are battling cancer and do not have the physical abilities like Nick does. Greg & I undertsand it will take some time for Nick to find his niche and what he really wants to do.
The kids are almost done with school and then will attend daycamp for the summer. Nick will be taking a summer enrichment program to help out with his reading. We have seen improvement with him and continue to try and find the books he likes. That is all news for now. I will have more to post next month with many activities coming up. Take Care, Karen

Monthly Clinic Visit

2011-05-10T17:33:00.006-04:00

Our house continues to be busy with baseball and enjoying the warm weather when we have those days. Those of us who live in New England now that summer has not hit and we are still having cold days. Nick has his monthly clinic visit yesterday. We were worried about his eyes and how red they were over the weekend. He complained all day Sunday about how much they bothered him. We decided to give him some Benadryl on Sunday night and they seemed to work for a while. Nurse Pat at clinic thinks it is just allergies and he is showing no other signs but a stuffy nose. He has never had allergies in the past but then again, he has been on so much steroids and antibiotics that we probably would not know. His counts were great, the highest we have seen:
WBC: 10.0
RBC: 12
Plts: 338
ANC: 3,200

My only concern at clinic was his constant bruising all over his body. He definitely bruises easily but the nurse did not show concern for that. I guess the bruises on his legs are normal and he has a few on his arms. I think we just forget how active and playful he is now that this is a boy enjoying himself. I also learned that Nick will now go to clinic every 6wks instead of every month. I was a bit surprised and still not sure if I like this 'plan', which is part of his protocol. He finishes his Bactrum in 2wks, which would be 6 months off treatment.... Still can not believe it at times.
Auntie Lisa and I took the boys to the Red Sox game on Friday night. We had a lot of fun. Colby was really into the game and Nick made sure I bought every food that came by us. He would tell me to get my hand up in the air. I mentioned to Nick that his first 2 times he was here, was steroid week and he was miserable. We stayed until the top of the 9th inning and they left, unfortunately the Red Sox were losing. The boys brought their gloves hoping to catch a foul ball. Thank you to my very dear friend for the tix and thinking of us..... the memories will last.
Greg and I would like to say thank you for everyone who participated/donated to The Tomorrow Fund Stroll. The stroll raised over $100,000 this year. That is the most they have ever raised and brought in over 3,000 'strollers' for the day. As the Shannon Family we can not say enough great things about what the Tomorrow Fund does to help out the families going through treatment. To say they care about people is an understatement and anyway we can help out, we try. Take care. Karen

2011-04-20T14:45:00.004-04:00

I know I do not spend a lot of time blogging anymore. I am not sure if anyone is still reading this or not. I think about blogging and then I get busy and tell myself I will do it later. Everyone is great. It is school break this week and we have the boys busy everyday on top of baseball every night. There is a lot of laughter, screaming boys and tired parents at night. I have been doing double duty with work and Greg is in school and working so schedules seem to be filled these days. There is little time to think about the 'what if's' for Nick, so we move forward. Nick had his first pediatrician visit since his diagnosis this week. (I called the clinic for the everything...just did not trust anyone else during his treatment) He is great overall, below the bar on height and weight, it could be just genes or from the chemo/radiation. We really will not know until later on and when he is older. Colby on the other hand is growing leaps and bounds. He grew 4 inches in 1.5 years and gained weight. It is hard to tell I have two 7 year olds until 4/25 (then colby turns 8) with such a height difference. One month and Nick will be off the Bactrum, which means, he is done with all meds. I still have his old medicine in the cabinet and have not cleaned it out yet. I look at the bottles and of course memories flash into my head, I just need to get rid of the stuff.

Tomorrow Fund Stroll 4/10

2011-04-06T21:30:00.002-04:00

Hello All,
I know I left some information hanging from the last post. We have been very busy and trying to absorb/adjust to the schedule. We had a surprise Birthday party for Nana (Greg's mom) on Sunday. She was completely surprised and we had family come into town to celebrate with us. The day was great with all the cousins playing together. I feel like the house is alive when we are able to have friends and family over. It can be crazy but lots of fun. We have spent the past couple of years not allowing people in our house so it is nice to open our doors again. We hope it will stay that way.
The last blog I posted about a family member who was diagnosed with cancer. Papa Charlie (Greg's dad) was diaganosed with prostate cancer and he recieved the results on Friday. He is in the early stages of cancer and he does have options. We are all here to support him and he loves we love him very much. I think the overwhelming factor of it all is hearing the 'C' word again. As always, we will unite and fight!

On Sunday we be participating in the Tomorrow Fund Stroll for the 3rd year in a row. The kids look forward to the stroll, not knowing 100% the meaning of it. That is okay because we, as parents, are coming together to support a wonderful clinic. We are able to see the doctors and nurses outside of clinic with their families to. You really know they care about the children. We are hoping for great weather so the kids will get a few laps in and enjoy the time with old/new friends from clinic. If anyone is interested in donating to the Tomorrow fund, please go to www.tomorrowfund.org. Thank you.

Happy 7th Birthday Nicholas

2011-04-01T16:01:00.004-04:00

Nicholas will be 7 tomorrow. We get to enjoy having two 7 yr olds in the house for the next 3 weeks and then Colby is 8. We have decided to not plan a party this year for either of the boys. We have a celebration after the Tomorrow Fund Walk for them and enjoy our family time together tomorrow. The kids have been asking us for a big present this year so we decided to go ahead and get them that instead of a birthday party. Nick will have his 'traditional' breakfast in bed tomorrow morning and enjoy the day, probably bossing us around.
Last weekend we took the boys to the Hole in Wall open house for summer campers. This year Nick is old enough to go for a week. He is really excited and both boys did not want to leave the place. Everytime we have pulled up to Hole in the Wall you have a feeling of peace. Just for Greg & I to be there w/the family for a few hours, completely releived our stress and just relaxed us. We both have been busy with work, me traveling and school for Greg so to find a way (and it's free)to just be us is always great. I signed Nick up to go to camp at the beginning of August and then siblings (Colby) will go the last week in August.
Nick has been feeling great and contiues to work hard in school. We have just learned today of another family member who has been diagnosed with Cancer. For the privacy of our family and the new diagnosis, I am leaving the name out. I am asking for extra prayers in our family while they find the best treatment plan and course of action to take. We love you........

Getting Ready for April Birthday Month

2011-03-24T11:21:00.003-04:00

Hello,
Everyone is real busy at the Shannon Household. We are getting ready for baseball and flag football for the boys. Nick continues to feel great. I am still amazed we made it through winter with no sickness for Nick. Last year we were in/out of the hospital so many times, I thought it would not end. This year we are having fun at home and working really hard with Nick at school. He had his eye exam and apparently he was not too happy to receive the drops in eyes that his eye dilate. The good news is that everything turned out to be okay. The doctor said he was a little far sighted but felt he would out grow it and hope to be have complete normal vision. In 2 months we go for Nick's neuropsych. exam to see how he is developing mentally. We know he still is struggling in some aspects of school and not 100% up to his grade level. We continue to work with at home and practice reading a lot as well.
April is always a busy and exciting month for us. Nick's birthday is on the 2nd and Colby's is on the 25th. My sister's kids are all in April as well, so we have lots to celebrate. And our Nana (Greg's mom) will turn 70 on the 10th. That makes 6 birthdays this month. Since Greg and I enjoy having family/friends at our house, we will kick off the month with a party after the Tomorrow Fund Walk on the 10th. I am sure there will be more and for us, it's all about the kids.
We have signed Nick up for a week of camp at Hole in the Wall. He is very excited to go this summer and we hope to get away for a weekend at Camp Sunshine. We are also planning a trip to NC to visit my sister and family. I am not used to planning so far in advance, we always planned last minute because we never knew how Nick would feel. It's definitely hard to keep up with the schedule. I am traveling a lot for work right now and hopefully it will slow over the next month or so. Greg is working and going to school, so we are on the go most of the time. Tommy is growing by leaps and bounds. He is so smart and a really great boy. It is hard to believe he will be 3 this year. I try not to feel guilty about how much we missed of first year of his life, between Nick in the hospital, work schedules and maintaining on a daily basis. Tom was always in good hands with our family who helped us out, but I wish I could have been there more for him. As I always say, we are enjoying our time together tremendously as a family.
Please continue to pray for the children and families who are not as lucky as us. We just found out a girl in our clinic has relapsed with Wilm's tumor and they are trying to find the right treatment plan for her. She is 9 and to young to have to go through the treatment again.
I will keep everyone updated throughout the month as we celebrate birthdays. Karen

All is Quiet Here

2011-03-09T12:50:00.013-05:00

It has been a while since I last posted but that is good news. I used to post in the past when Nick was sick or being admitted to the hospital, a number of things. Now I find it hard to write. We are all happy and just enjoying getting back to normalcy. Greg & I had a great time in Vegas but really missed the kids. We enjoyed being able to sleep in and take long walks down the strip but to here their voices everytime we called to say goodnight reminded us of everything we have been through. We both realized how our time together as a family is so precious and you want to enjoy every minute. We were excited to make it home safe and hug the kids first thing in the morning. The boys really missed us and I know Tommy did not understand why I called him on the phone every night. We are looking forward to some family vacations this summer. We do not have plans yet but they are in the works. All I know is that it will travel as a family together with lots of laughs.
Nick will have clinic next Monday, so I will post his counts then.
Karen

Where is Nick?

2011-02-25T10:04:00.005-05:00

The boys have had a great school vacation week. I think this has been one of their favorite weeks in a while. Monday started off with me taking Colby & Nick tubing with the Cub Scouts, in the morning. Then I met Papa Boston and he took them to his place where they went sledding, ice skating, sledding again and jacuzzi tub in the evening. This happened all in one day. Tuesday they went to the JFK Library for a kids show and then came home. Wed. they had a sleepover at Aunti Michele's house and to the movies for a show. Thursday Nick went with Grammy for a sleepover at Aunt Amy's house. Colby has a playdate over today and they are having a blast playing Wii. Nick has a lot of energy now and does not tire easily. We expect Nick to nap everyday but he has not and just keeps going. I am still amazed when I look at him now and how much he has changed.... back to the nick we know. His face shows it all. We have definitely let our guard down quite a bit and just trying to let the boys be boys. The spring is coming and they will start up sports again and continue to keep them active.
Next week Greg & I are traveling to Vegas. I am going for work and decided to make it into an extended stay through Sunday. I am used to being away from the kids for a night at a time but not this long. It has been over 3 years since I left the kids for this period of time. I am excited to go and have some quality time with Greg but will also miss the kids. I am sure next week I will be a stress ball before leaving but hope to take advantage of some R&R while I am out there. We are so fortunate to have family here to help make this possible for Greg & I.

The Tomorrow Fund Walk is being held on April 10th at 10am. If you would like to come out and support us, you are welcome to join us. Click on the link to the right of the blog - 'tomorrow fund' logo for more information. The boys are I are putting together some donation stuff. One of my goals this year was to give back, not from me but teaching the boys different ways to give back to the people who need it. Hopefully this is just the start of it.

Karen

2011-02-20T19:15:00.004-05:00

Hello,
We are all together tonight and hanging out as a family. Nicholas and Colby would like to say a few words... so here we go:

Nick: I am feeling all better now. Me and my family are doing ok. I hope there will be peace. I pray for my friends. I have made a lot of friends. I am much more stronger and try to raise money to cure kids.

Colby: I am glad that my brother is okay. I was really worried when my brother was sick. I really wish to sign up for football and baseball this year. I wish I could do something for everyone out there and at school we are trying to raise money to help cure the kids today.

SAVE THE DATE: APRIL 10TH... TOMORROW FUND WALK
We will give more details on the next update. School vacation and lots of activity for the kids this week. Karen

First Clinic Visit without the Port

2011-02-15T14:34:00.010-05:00

I know it has been since I have last updated. I think about blogging a lot but then I just do not feel like it. Nick is feeling great and working on getting back into a routine. He does have a few set backs at school and I think it is partly due to the amount of school he missed last year. He is behind in reading, so he receive tutoring for this. He really tries so hard to read books but it takes a lot of energy out of him, so we are patient and work with him when we can. He has excellent hand writing and continues to improve on his spelling words. I know the next few months will be a work in progress and trying to catch him up so he is ready for 2nd grade. Nick had a neuro-phsyc.test done before his radiation treatments back in 12/08. His results were outstanding and he way above on the 'smart' chart. I know we need to take him back for re-evaluation to see how he has changed. It could be from radiation or just the time away from school. I think I have been personally dragging my feet on making the call.
The emotional roller coaster you feel from ending treatment is very hard to describe. I see my Nick and how wonderful he is and then you feel for the ones who are not there yet. The routine of clinic is not there and you are looking to find something else. By no means am I complaining about off treatment but the emotions of the past couple years catch up to you. At least once a week (maybe a day), I think about an instance in Nick's treatment, when he was sick, healthy, inpatient, that will never go away. Last night Nick asked to sleep with me. I know it was because he had clinic yesterday and he was not happy about the blood draw from the arm. We had 4 people holding him down while he sat on my lap. I tried to explain to him to hold still and it would not hurt but he said he did not like the elastic around his arm. If this happened before he was dx, I probably would have been a wreck watching him cry and scream and so upset, but yesterday we HAD to draw blood.... We all needed to know what his counts were and how much chemo is still in his body. I am not sure if it will get better each month but the nurses are really great and strong. His counts are back to normal:
WBC: 7.8
RBC: 12.1
Plts: 314
Nurse Pat mentioned he still has chemo in his body and they could through the 'differentials' part of the test. She showed me a number and said as that drops it means the chemo is leaving his body. The next step for us is to schedule an eye appointment. The nurse mentioned that Leukemia can actually sit in the back of the eye (very rare) and be systematic to Nick so they would like him to go see an optometrist. She also mentioned that the long term steroid use can have side effects. I was surprised to hear all of this but then again, we know the word 'side effects' and we will do whatever is needed for Nick. I have attached a couple of pictures from Dec 2010... Flashes of Hope. We happened to be at clinic that day and they were there so we had our pictures taken with Nick.

PS: In 3 days South Elementary School raised $780.00 for the Pennies for Patients Program and they stil have 10 more days to go.

Pennies for Patients

2011-01-31T09:35:00.003-05:00

Hello All, It is definitely different not posting all the time. I would always think to myself, time to post, get it done. Now, I really do not have a lot to post about. Our family is great. We are wondering if the kids will ever have a 5 day school week since a snow storm has come in every week, canceling school. The kids are loving it and Nick is the first one to put on his snow gear and go outside. I can remember back to the first winter (08) when Nick was dx and he had no hair. He would complain all the time that he was cold and that Mommy and Daddy were to cheap to turn the heat on. Now, he runs around the house without a shirt on. We are grateful for his strength and how quickly he has bounced back to the child we knew before Leukemia.
Nick & Colby's elementary school will be running a fundraiser event called Pennies for Patients and Nick is the honorary kid. All the proceeds will go to the Leukemia and Lymphoma Society. I put together an autobiography of Nick and sent in some pictures. The kick off meeting is on the 7th and Greg & I were invited to attend. South Elementary has been so supportive of Nick and have gone out of there way to make sure he is always safe.
Colby was able to bring Nick's port into school last week and he was a proud big brother explaining to his classmates what the port actually was. The nurse came in and gave him gloves to wear, during his presentation. I wish I could have been there to here him speak. Karen

Port is Out

2011-01-18T12:33:00.008-05:00

Hello,
Nick's port has been removed. It has been 2 years and 3 months since Nick's port was surgically placed in his chest. The port has been used many times for Chemo, blood transfusions, antibiotics, sleepy medicine, blood draws/counts and IVIG. The port is an amazing medical device that has helped ease the pain of being 'poked' with an IV. Nick was not comfortable with it in the beginning and cried when he was accessed. Nick is so strong he learned to deal with it and soon enough, it did not bother him anymore. We also had the help of the emla cream, which numbed his skin before accessing. The procedure was simple yesterday and Greg & I felt calm. We brought Colby and Joey with us to the appt. They were able to hang out with Nick prior to going into surgery and then saw him briefly in recovery. I was able to stay with Nick until the 'bubble gum' gas made him fall asleep. I was with him in recovery when he woke up. The first thing he said was: "do I have a needle in my arm? It was not there when I fell asleep'. Nick was able to fall asleep in my arms and then the nurse inserted an IV into him. This is a precaution in case he needed any medicine during or after surgery. Nick felt a little groggy waking up and Greg carried him out. He felt great last night and was eating up a storm. We decided to keep him home today because he was feeling sore where the incision was and the doctor said no physical activity for a few days.
The middle of the port feels like gel and is where the needle would enter. There was also a tub attached to the port (where it looks like a needle sticking out) which was connected to a major vein for drawing blood and giving medicine. We were able to take the port home, after being sterilized. (Actual picture above) Nick has not yet decided what he wants to do with it, but he is thinking of something. Nick said to us before going to bed: "I am actually glad I have my port out. It feels good." Colby has asked to bring it to school and show his friends. He thinks it is cool. I am not sure how kids would react to such a device and really understand it. For now, we are just enjoying the kids being kids.

Nick's Port Removal Scheduled

2011-01-11T23:54:00.006-05:00

Hello,
We have scheduled for Nick's port removal on Monday, January 17th, 2011. Nick was excited to be picked up from school early today and we first went to clinic for blood counts. I forgot to make the appointment so the clinic was not expecting us but of course they took us right away. The Tomorrow Fund clinic is amazing. Nick lost 6 pounds in a month. We have definitely seen the difference in his face. We did not wait and the nurse accessed his port and took blood from it right away and we were on away for some lunch. We were scheduled to meet with the surgeon, Dr. Luks for a consult before the port removal but the our wait time ended up being over an hour long and we had to get home for Colby. The nurse was very helpful and able to go over the paper work with us and schedule our appt. We are still waiting on the final surgery time for Monday, but looking forward to it. Colby has asked us many times that he would like to be there for Nick when his port gets removed. We promised he could be part of the day. Greg and I believe the best news is that the kids are already out of school on Monday (President's Day), so zero make up work will have to done.
The other day Nick said to us: "I would rather go to clinic than school. Is that funny or what? Is it okay to feel this way." I believe Nick is actually missing his comfort zone of clinic and treatment. He talks about times when he was not feeling well or an 'I remember when' time on treatment. Greg & I just move past those moments and tell him how strong he is now.
We are so proud of Nick and everything he has gone through. Our family has grown so much stronger because of him and who we ALL are. Greg & I constantly talk about the past couple of years and how much we have a learned, the people we have have met, and best of all, to enjoy our time, whether is be days, weeks or year.

We are still looking forward to our many fans out there for comments for Nick. It might take a couple of months to put together what I have planned, so come and be a part of it. Thanks, Karen

Great Holiday & Zero Leukemia Cells

2011-01-04T10:43:00.005-05:00

Hello,
We had an awesome Holiday Break and lots of parties to attend/host. It has been nice to take a break from the blog for 2 weeks. I think this is the longest time I have gone without blogging. The Shannon family is feeling great and just getting back into the routine of school. We have truly been making the most of time together as a family. I am not even sure where to start. I will start with an update on Nick: The pathology results from his spinal and bone aspiration came back with zero leukemia cells. Yes, this is exactly what we hoped for. The MRD (minimal residual of disease) testing that was sent to Dana Farber is not back yet. This test can take a 'deeper dive' into the cell make up and see if there is a potential for relapse. Since Nick was diagnosed with T-Cell Leukemia the doctors at Dana Farber (clinical trial) are not sure if the results will be accurate or not. The MRD testing is typically done with Pre-B low-risk leukemia patients. Nick is very high risk with T-cell. The results should come back in the next few weeks, but we are moving forward with the port removal. We go on the 11th for a consult with the surgeon and then will make our appointment. It will almost be a month since our last clinic visit, so we will stop in at clinic for his port access and blood counts to be done.
Overall we are great. Nick is physically changing some. He is losing the bloated steroids face and really looking like the Nick we had 2+ years ago. He is getting stronger and has more energy than before. We are still working on some of the bad habits he picked up during treatment (just being spoiled) and his temper will flare but not as often. We even see a change in Colby. He tells people my brother 'used' to have cancer but now he does not. The boys rough house a lot now and no one holds back. Tom always tries to jump in on the fun.......
Christmas break we nice and relaxing, besides the few parties we had. It felt great to entertain again and enjoy fun times with the family and friends. Nick made it to New Year's this year. He took a 3 hour nap during the day and rang in the New Year's with Colby, Greg & I and lots of friends. He was very proud of himself for staying awake.

I will continue to update the blog site, but not as often. I am working on a project in conjunction with this site and I am asking everyone a favor: Please post any comment you would like for Nick. I am hoping to hear from everyone who reads this site. I will give details later.... but please post to us. Thanks, Karen

200th Post and 1 thing left to do

2010-12-17T14:39:00.004-05:00

Hello, We had a very eventful (in a good way) day at clinic. Nick was scheduled for his Lumbar Puncture (spinal) and bone aspiration at 11:30 in the PICU recovery. Greg & I decided not to leave until 10am, and relax a little at home. As soon as we walked into clinic, Santa Claus came in to see everybody. Nick told him he really wants a new blue bike this year. He learned how to ride w/o training wheels at the end of the summer and is ready to step up to the big kids bike. He had his picture taken and he built a wooden frame, at clinic, to put it in. Clinic also had a table full of toys for each child to pick one. Nick picked the Spiderman Monopoly. He had his port accessed and his counts done. Then we headed up to the 5th floor where Flashes of Hope was taking photos. We have been very lucky to have flashes of hope capture Nick's progression through his treatment. I will have to make a collage for him some day. Then we finally headed down for the procedure. Greg & I were able to stay in the room and hold Nick while he fell asleep. He was really good and only complained about being hungry a few times.... I think he was just bored. We have seen the spinal procedure before. The doctor inserts a very small needle in the spine and fluid drips out into the sample tube. The fluid was very clear and exactly how the doctor likes to see it. The bone aspiration was very interesting. They insert a needle, the size of a food thermometer into the back of his hip bone and then use a syringe to draw the marrow out (which is red). He received more sleeping medicine this time and he slept for an extra hour before waking up. He felt sore last night where the spot was but it did not stop him from running around and going to Cub Scouts with his brother.
The next step is to schedule the port removal and EKG on his heart. We are working on scheduling something in January.
We look forward to enjoying time with friends and family this weekend and let the boys be boys. I will try to update after Christmas with the exciting gifts the boys will receive. Until then, be safe, Merry Christmas and don't forget to give your kids the extra hugs they deserve.

2010-12-09T08:55:00.003-05:00

Hello. We have been very busy lately with seeing friends and families. There are always parties and playdates to keep up with. We love the chaos around this time of year and the boys are really getting into Christmas. It is easy to remember that 2 years ago we celebrated Christmas at home, just the family and the next day Nick spiked a fever and we were in the hospital until New Year's. At this time, he was also going through radiation. We passed up on many invitatios to keep Nick safe and away from too many germs. It feels good this year to let our guard down (some) and not hesitate to go places and to see Santa.
As we are in the middle of the hustle and bustle of Christmas, The Shannon Family would like to thank all of our family, friends, nieghbors, co-workers and clinic moms who have stood by us for the past couple of years. You know who you are and we are greatful to have you in our lives. You were there for us when we needed Colby picked up from the bus stop because Nick was in the ER. You were there to just check-in on us or bring us a meal. Even the days when I did not feel like talking to anybody or leaving Nick while he was home sick.... you stilled called and never gave up on us. Nick is our hero and we know how many fans he has.
Next Thursday will be the Spinal (Lumbar Pucture) and bone aspiriation (they go into the hip bone for this). He will probably be sore from the aspiriation but he will not be getting any chemo, which is great. We do not have a port removal date with the surgeon yet, but will book that next week as well. Take Care, Karen

Disney

2010-11-30T16:30:00.002-05:00

I know it took a long time to post and it is only a few of the pictures I have. Still working on downloading my camera to capture other parks.

2010-11-30T14:38:00.005-05:00

It's been 10 days since I updated the blog and feels good to take a little break. Our Thanksgiving was nice, especially watching the Patriots win. The boys were very well behaved at Auntie Lisa's house and tired by the end of the day. The boys had the day off of school yesterday, so Colby came to clinic with us. Nick recieved his pentamine and his second flu/H1N1 shot, in his leg, of course. He refuses to have a shot in his arm. He remembers the shots he received in his leg and continues to think it 'hurts' less there. We tried to tell him, it probably hurts more, they use a longer needle to get deep in his muscle.
Reflections:
We are not completely there yet beleiving Nick's treatment has ended. Greg & I continually talk about his spinal coming up, his EKG on his heart and the port removal. As much as you feel comfortable going to clinic, they are like family to us, the past will always be with us. I saw a little boy yesterday, who recently had surgery on his brain and you could see the scared look in his eyes. We remember how scared Nick was on the first fews days in the hospital and then his visits to clinic. You feel so much for these families and wish you could do more. Greg & I have been talking about ways to give back and we can help,so we have made this our first New Year's resolution for 2011. (I know it should be losing weight for me, but that will come next). We continue to keep ourselves busy with activities filled on weekends and looking forward to house full of family/friends on Christmas.

Done

2010-11-20T13:04:00.005-05:00

We are officially done with chemo and steroids. The feeling: Good! Nick has definitely given us a challenge on his last week of treatment. He bargained to sleep in our bed at least 6 nights, which we agreed to. He missed school on Thursday because he was feeling 'rotten', but the funny thing was, he smiled all day while he was home. This was an emotional week for him and he took a lot of frustration out on Colby. Colby even asked us what he was doing wrong and we would remind him: "Nick is on the cranky medicine, you have done nothing wrong." Now the week has ended and treatment is done. Again, I do not believe we feel completely settled, but more relaxed and a little less anxiety. I am sure the anexity will come everytime Nick goes for blood work, but we will deal with that to.
We are going to have a little party in Nick's classroom on Tuesday. I will bring in some cupcakes for the kids. His teacher has been wonderful and she really wanted Nick to know how much she cares.
I could not resist posting the picture of the boys at the water park at Give Kids the World. Take care and I will post soon. Karen

Feeling a Little Lost

2010-11-16T13:29:00.003-05:00

Hello,
Yesterday, Greg, Colby, Nick and I went to clinic for Nick's last chemo through his port. It was quiet for us. The boys played the Wii together and then worked on beads. Greg & I usually go separately, alternating every other week and we bring our laptops to do work. We both decided it was a day to take for our family and be together, so the wait at clinic was uneventful. Nick was coughing all weekend and feeling a little tired so I was surprised to see his counts so high:

WBC: 8.3
RBC: 10
APC: 6,000
He received his Vincristine and Methotrexate through his port and we were done for the day. I really thought Greg and I would be crying the whole time, but neither of us did. I think as our Nurse Paula said.... "You both look like a lot of the parents do on their last day... Lost." "That's okay because your life will start to change and try to get back to normalcy." Of course I had a good excuse to go back to clinic in 2 weeks and check his counts. He will also need his second flu shot and one more dose of the Pantemine (antibiotic) through his port. After his port is removed or as Nick says "de-accessed for good", he will remain on Bactrim for 6 months, while his counts fully recover. We have scheduled his spinal and bone aspiriation on 12/16. He will recieve his sleepy medicine, check counts and they will take a sample at this time. He will not receive any chemo into the spine, which is good news. Then we wait a couple of weeks and schedule for his port removal with the surgeon.
Nick will officially finish with his medicines (steroids and 6MP) this Saturday, so we are not quite done, but almost.
We took the boys to Dave&Busters for lunch and games. We all had a great time and just let the boys be boys. A few more days to go........

Next week is last Chemo Week

2010-11-08T16:48:00.004-05:00

Hello,
We had a great week at the Shannon Household. Nick was back to himself after the last steroid dose. Not sure why he had a hard time with it and all the pain. The boys are getting back to a routine after the Disney trip. It definitely took them a little while to come off of cloud 9 and focus again. Colby asked to watch the Disney photo CD again this weekend. I am working on posting the pictures, should be soon.
I took Nick to clinic today. His counts were great:
WBC: 4.6
RBC: 10.6
APC: 3,000
He received his Methotrexate and will go back next Monday for the final week. He will start a cycle but only finish the first week of it. The reason for this is because his protocol (Dana Farber study/trial he is on) states the treatment will go for 2 straight years after he is in remission. He was in remission on 11/18/08. What this means is that the chemo killed all the leukemia cells in his blood during his 30 day Induction phase. He has remmained in remission this whole but because Leukemia is a blood cancer, there is always a chance of those cancer cells popping up again. Due to years of research doctors have found out that after 2 yrs (depending what protocol you are on, could be a little longer), that treatment can be stopped. So here we are..... 2 years later. The emotions were catching up to me today at clinic. One of my clinic moms (Jen) and I were talking about it and she was asking if we had plans for Nick when it is over.... I don't know yet. We still have the spinal and bone aspiration in Dec. and the port to be taken out. I definitely had to take some deep breaths when I was talking to Nurse Pat, Paula and even Donna, our parent consultant. I think the past 2 years Nick has endured so much and he is definitely one of the lucky ones to get through everything he has. When he was first diagnosed the Doctor told us to expect a lot of hospital stays, blood transfusions, platelet transfusion, bacteria infections and plenty of virus's. He never needed a platelet transfusion and he did develope C-diff and pneumonia, but was treatable through antibiotics. He was labeled the 'fever' child at clinic b/c of all the fevers he had last year, yet, he made it through all of it.
I guess the date caught up with me so fast today, that I realized next week is it. I doubt I will ever feel it is 100% over, we will have follow up visits for at least the next 5 years. Monday will be a tough day for me (and I am sure Greg to). When you rely on a medicine to cure your son and then it stops, the adjustment peroid has to come. I can't explain it, but I am sure my cancer moms out there know the feeling. The tears were flowing on the way home today, but that is okay because we have Nick. More to post later.

Here it is..... The Long Post from Disney

2010-10-31T09:13:00.005-04:00

Quick update. Nick finished his steroid week. He had a really hard time and I was traveling all week for work. I am lucky to have a wonderful husband who held down the fort while I was gone. Nick left early from school on Thursday and has been on/off pain through the weekend. He is feeling better and good news.... 1 to go. Okay, the following post is very long but I really wanted to make sure I kept the memories. I am still working on posting pictures....

Disney Trip with Make A Wish,

We are back from our Make A Wish trip to Disney. There is so much to talk about I am going to try and lay it out by day. (I hope to remember it all). We visited 6 parks in 5 days and met many characters along the way. We stayed at Give Kids the World and the place was very warm and inviting. It is made for kids and not your typical hotel stay. Each night there was an activity for the kids and each morning we had characters from the different parks come and visit. We began our trip on Sat. Oct. 16th. Our biggest fear before leaving was worrying about Colby actually getting on the plane. Of course he put our fears to rest and got right on…. So our story begins:

Day 1: 5am the limo shows up to pick us up. The boys were completely surprised and so excited to jump in and get to the airport. We arrived at GKTW (give kids the world) around lunch time and checked into our villa, had lunch and off to the pool the kids went. I attended my orientation program where they gave us our tickets to the parks and all other information we needed for the week. The kids rode the carousel and took a train ride and played in the candyland playground.
Day 2: We were up early, off to breakfast and then to the Magic Kingdom. We rented a double stroller and Colby walked the whole day. The third ride we took the boys to Thunder Mtn. ride. We told them it was just a train ride through the mountains… little did they know it was a roller coaster. After the ride ended we asked them how was it? Thumbs up, thumbs in the middle or thumbs down…. We got a thumbs in the middle and then we were told that we lied to our children… ooops that happens when we know how much fun they will have on the rides. We had pictures with Mickey & Minnie in toon town. We ended the day in Tomorrowland and riding the Buzz Lightyear ride. Colby really like the people movers ride. The first day went by so fast. Tom took a nap at lunch time and then he was back on the rides.
Day 3: Up early and headed to the main entrance of GKTW to see which characters would show up for autographs. It was Mickey, Minnie, Pluto and Goofy. The kids gave them hugs (even Tom) and had pictures taken. We had breakfast in the Gingerbread house and then headed to Animal Kingdom for the day. We rode the Safari ride first and it was amazing to see how close the animals were to us. The kids loved being so close to giraffes, elephants, rhino’s and many more. Then we went over to Rafiki’s planet watch and the kids brushed the goats and saw interesting insects and snacks. Nick was asking to go on a water ride and the weather was definitely hot so we headed to the Kali River rapids. Grammy stayed back with Tom while the for us took the adventure. We did not get that wet. (the 1st time) On our way over to Dinoland, Greg & I jumped on the Mt. Everest roller coaster. The boys did not want to venture on this ride but that was okay since it did go backwards and forwards in the dark. The coaster was a blast. In Dinoland you felt like you were at a Carnival with rides, games and prizes. We stopped for lunch at this point and Tom fell asleep. Nick was looking forward to going on the spinning coaster but unfortunately he did not make the height requirement. Colby was interested in seeing a 3D show called It’s Tough to be a Bug. There were a few warnings before you entered the theatre that it might be scary for the kids, it was. The seats felt like a bug had crawled through and we were sprayed with water, just a little but since the show was in 3D. The boys just closed their eyes when they felt scared. Tom did not really care, he watch the whole thing. The boys met Stitch, Rafiki, Flik (ant) and a couple more characters. That night at GKTW was ‘kids night out’ so we signed Colby & Nick up. The kids had a blast… not exactly sure what they did the whole time but Colby came home with a blue tongue and lips. The kids talked about a pie throwing contest. Grammy, Greg, Tom and I went out to dinner.
Day 4: We had a big day planned this day. 2 parks in one day. We started the morning by going to Hollywood Studios. We went straight to the Jedi training show. They picked kids out of the crowd for the training and Nick & Colby asked if they could be picked. They both were wearing their Make A Wish buttons, so they picked them right away. Funny story: The kids were doing a great job during the training program and then came Darth Vader through the doors. Colby all of a sudden got scared and ran off the stage. I explained to him that it was a privilege he was picked and he needed to get back on the stage and Greg had his ‘chat’ with him. Colby ended up going back on stage and battled against Darth Vader. The show was really cool and Nick ‘used the force’ on the storm troupers twice. Next was the Indiana Jones stunt show. We were given VIP seats with another Make A Wish family. Great show and if you have ever been to Hollywood studios you would know that it has not changed over the last decade. Greg brought us all over to the Muppets 3D show and then it was off to the Toy Story ride. On the way to the ride Tom was able to stop and see his Little Einstein buddies. He gave them big hugs and had his picture taken with them. The kids ended their day at Hollywood studios by watching the Playhouse Disney – live on stage. I am not sure who enjoyed it more, Tom or Colby. The smiles on their faces was awesome. On the way out of the park, Greg & I could not resist but to ride another coaster, so we stopped at the Rock n Roller Coaster starting Aerosmith. Our plan was to go back to GKTW and rest before heading over to the Magic Kingdom for the Halloween party. As soon as we arrived back, the kids were ready to jump back in the car and see Mickey again. Grammy and Tom went the beach party that was going on at GKTW that night. Magic Kingdom it was, at night and very crowded. The boys rode Buzz lightyear again and the cars and then it was off to trick or treating. Fantasyland was closed due to renovations but were able to go on some rides, Snow white, Peter pan and dumbo. The kids and I was pretty tired by 9pm, so we watched the parade, enjoyed the show on the stage at the castle and headed back to our place. We watched some of the fire works from our car. Colby actually cried on the way out when he realized this would be our last time seeing Mickey and the Magic Kingdom. We told him that we hope to go back a few years from now.
Day 5: We started the morning off with breakfast at the Coronado Resort. We were asked by the MAW (Make A Wish Foundation) to attend their conference. The employees were celebrating 30 yrs. There were a bunch of families who attended the breakfast. After breakfast we were brought into the conference room where all the employees were, it was a total surprise to them. They were cheering (for the kids), some were taking pictures and of course some with tears in their eyes. This moment was awesome, we had 3D glasses that showed stars all around the room. The Disney characters came out and gave all the kids high-5’s. It was a moment that we will never forget. We were not there for the rides, the food or anything else…. We were there to say Thank You. We decided to go to a water park today. We dropped Grammy off at her Uncle Renee’s house and we headed to Aquatica. The weather was perfect and we really enjoyed a family day. We enjoyed a lot of our time in the rapids and even Tom was having a blast. Nick ventured on 2 huge water slides while Nick & Colby played in the kids area. Colby actually took the challenge and went down ‘tunneled’ water slide.
Day 6: Busy day again. We went to Universal Studios and Islands of Adventure. The day was a blast. We started the day on the Jimmy Neutron ride. Another 3D ride, but still a lot of fun. Then it was onto the Shrek, were we had pictures with the cast. After that, we went to see Spongebob and had pictures with him. I have to say, I was very excited to meet Spongebob, he has been part of our family for a few years now.  We pretty much went on every ride we could, ET, The Simpsons, Men in Black, Jaws (which was very scary for the boys), Disaster and the day at Universal was finished after Grammy took Tom to see the Barney show. He had his pictures taken and hugged him. We were fortunate enough to have every character we ran into sign the kids autograph books, have their pictures taken and give them big hugs. The people at Universal went out of their way for the Make A Wish Kids. After lunch we walked over to Islands of Adventures. The day here started with Greg & I going on the Incredible Hulk roller coaster. The kids were excited to watch only….. The kids first ride here was Spider Man, they loved it and then had their picture taken with him. Next it was over to Jurassic Park. The boys were looking for a water ride to go, so we hoped on the Jurassic Park River Adventure. What they did not know is that ride took us up a huge mountain, in the dark and then down the flume, all through the water. The kids had fun but kept their eyes closed. Then it was over to Harry Potter. Unfortunately Nick did not make the height requirement and could not go on the ride, so Greg & I went on it. They had a small roller coaster that we rode with Nick after. Finally we finished the day at Dr. Seuss Landing. This section of the park was so much fun. We rode every ride, including one fish, two fish, red fish, blue fish. They had a little play area for the kids where they could take their shoes off and splash in the water. On the way out of the park, Greg & I were talking about how wonderful our week was. The kids were awesome, Grammy was a HUGE help and it was time to say good-bye.

We have many pictures and memories to last us. Thank you again to Make A Wish Foundation and Give Kids the World

Precious moments:
1. In the beginning of the week, each kid made a wish in the wishing well in the Castle of Miracles at GKTW. On our last night in the villa we were all talking about the week and how much fun we had. Colby asked us if we thought he conquered his fears. We said yes and explained how much he has overcome this week. Well he told us that was his wish for the week to overcome his fears.
2. At Hollywood studios right before lunch and Tom was so tired. We walked by the Little Einstein characters and Tom wanted us to stop, we kept going and he started to cry so we decided to go back and let Tom give them a hug. He hugged June (character) so tight and we all thought he was going to fall asleep in her arms, it made his day.
3. Nick using the force on the storm troopers during the Jedi training. He was pretty excited to be the only one in the group to use the force. Nick is still saying Thunder Mtn is his favorite ride.

Thank You Make A Wish and Give Kids the World

2010-10-25T21:20:00.005-04:00

We are back from vacation and already missing the warm weather. We had an awesome, fun, and smiling time. The weather stayed aroud 85-90 everyday and no rain. We went to 6 parks in 5 days and all the boys kept up with us. Grammy was great and really helped out with Tom. I am writing my journal about it all and will post the details soon. You might fall asleep reading it, but I am trying to capture every moment during our week.
I took Nick to clinic today and his counts are great:
WBC: 5.3
RBC: 11.7
PLTS: 351 - finally a normal reading
APC: 3,400
He starts a new cycle today, which means steroids, Vincristine, Methotrexate and 6MP. This is his 2nd to last scheduled cycle. I spoke with Nurse Pat today and we are figuring out dates for the spinal, bone aspiration and port removal. Nick did see all his buddies again today and we are trying to get back onto our 'normal' schedule. More to come......

2 Years Ago Today

2010-10-15T09:42:00.010-04:00

As a parent you always want the best for your kids. You might not be prepared for what is thrown at you but you have no choice but to go with it. 2 years ago today our lives changed forever. I can say forever because I do not believe there will be a day that goes by we will not remember this day. I can still remember Nick the day before I had to take him for blood work. The week before I had taken him to the pediatrics office because his neck (lymnodes) were so swollen and he was snoring at night. The doctor sent us immediately to the ER for blood work and warned us that they were checking for Leukemia. All his blood work came back normal and so we were sent home. The following week, we went back for more blood work because his neck was still swollen. This was on the 14th and the call came in on the 15th, while Nick was at daycare and enjoying picture day. (see picture) We drove to The Tomorrow Fund Clinic and was there all afternoon waiting for the final diagnosis. We told it was Leukemia and that there are 2 types (Pre-B and T-cell). The next morning it was confirmed that Nick had T-cell Leukemia, which is high risk and will endure more than 2 years of treatment. Here we are 2 years later and we are so proud of how Nick has done through treatment while still trying to be a fun 4,5 and 6 year old. I know I have shed more tears than he has through this battle.
We leave tomorrow for our Disney trip and of course we are all excited. I have attached a picture of the Pluto cake that the Make A Wish pals brought us. The limo will be picking us up bright and early tomorrow morning. The boys do not know about the limo yet, we are trying to keep some things a surprise. Tommy is battling a little cold so we are keeping him away from Nick. Greg and I are very appreciative of Make A Wish and what they have provided us for our trip. The generousity is amazing and we hope to pay it forward someday. We hope everyone has a great week and we post again soon. Take Care, Karen

Update: Tommy has an ear infection. I just gave him one dose of his antibiotic and hope to give another tonight. Nick and Colby seem to be fine for now....

2010-10-13T11:57:00.003-04:00

We have had a great week and getting ready for our big trip. We leave Saturday for Disney World through the Make A Wish Foundation. They have granted Nicholas his wish and we will be staying at Give Kids the World. The kids are super excited and even Tom is walking around the house calling for Mickey Mouse. Greg & I are a little stressed and trying to get everything ready, but hey, no complaints we just want to get there. Nicholas learned how to ride his bike last week with no training wheels. We have been trying with him for a couple of months now and he was never interested in learning. I think he has seen some of his friends in the neighborhood ride and wants to join them. Nicholas has been feeling well but his counts do not show it. I took him to clinic yesterday and found out his counts had dropped. On the advice of our nurse we decided to keep Nick home today, as a precautionary. If he gets a fever, he would be admitted. He is acting great and you would not know it, but we also do not want to miss our trip.

WBC: 2.6
RBC: 10.1
Plts: 441 - this is high and has been, I guess it goes hand in hand with whatever virus he is fighting off
APC: 1,100 - high enough to receive his methotrexate
ANC: 300 - anything below 500 you get admitted if you have a fever, they consider you neutropenic

I will be updating one more time before we leave...... Friday Oct. 15th 2010.... 2 years ago on this same day..... Karen

Another milestone for Nick!

2010-10-06T10:16:00.002-04:00

Nick is doing well. He handled his steroids last week real well. How well you ask? He handled it so well that he climbed a 40 foot rock wall and did a 900 foot zip line... twice!!! It is amazing to see how strong he is. I climbed the rock wall after he did and when I got to the top he was there to help me up. This all occcured at Hole in the Wall. Yet another amazing weekend with the most amazing of people. I actually did not want to go but felt that I should go for Karen and the kids. I am so glad I did. It is the type of place that rights you. It makes you realize how special life is, how you can not take a momet for granted and the people at hole in the wall don't take it for granted. They help the kids to learn how to enjoy the moment no matter how bad they feel. The kids all just enjoy the place and it goes by so fast. The other real interesting thing that happened at hole in the wall is that we stayed in a cabin for the first time which was awesome. The kids loved it and that is good since that is where they will stay when they go to camp there by themselves.

Nick's counts for the week
WBC 6.6
HGB 11.7
PLTS 407 (H)
APC 4000

Karen is traveling the next few days so it is all boys all the time at our house. I know that I already miss her and I am pretty sure the boys miss her too. Nick was feeling it last night before she left and demanded to sleep in our bed. It is funny how they show their worries in different ways.
Back to work now. Have a great week.
Greg

3 to go

2010-09-27T19:50:00.011-04:00

This week is our 3rd to last (cycle) treatment. I can not believe it and October is already here. Nick is great and really looking forward to going away. He started his steroids this week and is 1/7 so far sleeping in our bed... Hoping it will not last all week. Colby misses him when he is not sleeping in his bed, since they share a room now.
I have attached 2 pictures of Nick. The second one was taken in 5/09 at Hole in the Wall and first one was taken this past month at clinic. I think one of the hardest parts about treatment is the changes we see in Nick. I have a daycare picture of him on the day he was diagnosised and to see the different changes his body has gone through over the past 2 years is amazing. He gained a lot of weight due to the steroids, which contributed to some of his pain, he lost hair, grew it back and lost it again last Christmas. Now it is back again and he is starting to feel stronger in his legs. He is not running as fast as his friends but he tries. I truly believe no matter how many changes Nick goes through, it will never change his personality and who he is. He always gives us his great smile and keeps fighting.
Clinic was busy on Monday and just about all of my 'Monday group moms' where there. The kids had fun running around and playing together. His counts were good:
WBC: 7.4
RBC: 11.3
APC: 6,300 - high but the doctor thought he could be fighting a virus, which we believe he is. He has a little cough going right now, so we will keep a close eye on him for fevers.

2010-09-22T12:12:00.003-04:00

Between the last 1.5 weeks all of us in the family, with the exception of Nick was sick and with a fever. We could not believe this virus swept through our family but missed Nick. It is just the little things that excite us.
Nothing really new to report this week. I took Nick to clinic on Monday. He is feeling great and the doctor reminded us of the 'countdown' and asked how I was feeling about it. I think it was her way of preparing us for what is a head. Many parents have told us of the emotions/emptiness/excitement that goes along with end of treatment for your child. I am so lucky to have my clinic friends that I can reach out too. I told her my countdown is for Disney (from Make a Wish) and I have not thought about anything past this event. The boys are excited and they received a countdown calendar that they cross the days off. Nick is having fun at baseball and learning all the basics. Colby has decided to not play football this year but hopes to get back into it next year. We are going to a Cub Scouts meeting this week.... something Colby has been asking to do since last year. Nick will start another cycle next week, so we are looking forward to the annual Fall party at our friends house. Take care. Karen

counts:
WBC: 4.4
RBC: 10.1
APC: 2,800

Wow, No Pain! Ambassador Day for Nick

2010-09-16T15:21:00.006-04:00

This week has been much better than last, which is why we try to look forward and take things week by week. Colby will try again this weekend at football and we hope to see him continue to shack his fear. He does not want to quit and we support his decision. He did end up with a fever on Tues. night and into Wed. I am thinking he caught a strand of it from Tom’s virus last week.
Nick ended steroids on Tuesday morning and we thought for sure he would be in pain by the afternoon. To our delight he has not complained about pain at all this week. His appetite was there but I think he was to busy to think about any pain. In the past he would lie on the couch and watch TV and not feeling up to do anything. He has been busy with school and baseball practice this week and just being active. He is back to his smiling self again and we love to see it.
Today was a special day for Nicholas. He was awarded a medal from the Governor of RI and represented the town of Bellingham as an Ambassador. The Governor is very supportive of the Tomorrow Fund and has been giving away awards to the kids for the past 8 years.
The head of the Tomorrow Fund, Dr. Swhaltz gave us a great analogy today. She talked about how Hurricanes are always forming out to sea and we are made aware of them through the news. We go out and buy groceries, milk, etc.. and get ready for the storm. Sometimes the storm hits big, sometimes it blows over and other times you are in the eye of the storm. All the families and patients who have cancer do not have the chance to be ready for the storm. You are told your child has cancer and the next day your world is turned upside down. There is no notice but we as parents have to ride the storm and do the best we can for our children. Kids are resilient and the parents are there to fight for their child.
As I mentioned before, this month is National Childhood Cancer Awareness Month. It is through donations that the Tomorrow Fund exists to help families in financial need and support. They receive 50-70 newly diagnosed cases of childhood cancer a year. They unfortunately expect this but continue to look to the best possible treatment available in the USA. Here are some facts:

• Childhood cancers are the #1 disease killer of children - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
• Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
• The cause of most childhood cancers are unknown and at present, cannot be prevented.
•
• One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
• On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.
• While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
• Childhood leukemia (making up the largest group of childhood cancers) was once a certain death sentence, but now can be cured almost 80% of the time.
• Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.
• Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.

Greg took Nick on Monday to clinic and his were good. They have decided to increase his Methotrexate dose. He is still not at 100% dosage for his protocol but they keep increasing until we reach it. In the past when they increased the dose he would have a fever or be neutropenic so then it would be lowered again. It is a balancing act on Nick's body to see how much he can tolerate. Some kids can tolerate the full dose and other's can not. Nick seems to tolerate the full dose for a couple of weeks and then his body gets tired, fever starts and back to the ER. We hoping this will not happen this time around. Karen
Counts:
WBC: 7.2
RBC: 11.3
APC: 6,300

Challenging week/weekend

2010-09-12T19:40:00.007-04:00

Hello,
We have had an interesting few days. There have been challenges, melt downs and smiles for the past few days. I am not sure where to start this blog but I will back it up to Friday morning. Nick is on steroids and had a tough week last week for school. He was really moody at nighttime and ended up sleeping in our bed during the nights until sat. Friday morning was really hard for him. He did not feel like going to school and was asking to be picked up after lunch to come home. He is full day now and the teacher is wonderful with him and lets him rest on the mat when needed. I explained this to him on Friday morning but he still cried at the bus stop and went to school. I called the school around noon to check on him and they he had just come in from recess and was ready (his quotes) "To walk home and see his mom." I picked him up and he was fine and happy once he got home. Saturday was no different with his mood swings. He was very excited for the sleepover at Papa Boston's house that night but kept asking all morning when he could go. Nick was upset with every little going on in the house and Colby was making him upset. (eventhough Nick was bugging him to) He decided to not attend the birthday party the boys were invited to and stayed home. He play his first baseball game in the afternoon but was not really into it. Again he asked to go home but we convinced him to stay and be with the team. Once Papa showed up Nick was all smiles and had a great time being away for the night. Papa said he was good but still has those moments when he really wants something and can get upset quickly. We believe these steroids just make him so moody that once he something stuck in his mind he wants and does not get it... he changes and the meltdown comes. His last dose of steroids (for this cycle) is tomorrow morning. Hopefully he will be okay at school and no pain. Greg will take him to clinic in the afternoon.
Colby has been playing football for almost 6 weeks now. He has had his ups and downs with the sport but continues to tell us how much he likes it. The challenge we have is during game time. As soon as he sees the other team he gets scared of them. The coaches really try hard to make him feel comfortable and tell him everything is going to be okay. Today was very hard because he turns his emotion into crying and not wanting to play. Greg and I are not sure where to go with his behavior because you practice to play the game. Greg and I want the best for Colby and to overcome this fear because we believe the fear is generated from football alone but other things. Emotions are running a little high tonight but felt like I had to write it all down. I am traveling on business the next 2 days and we have laid out a couple of things for Colby and Nick to do while we are gone.
I have to include Tom in the blog to, he was a little cranky this weekend to. He was sick with a rash and a little fussy. As soon as we gave him tylenol he was back to himself and feeling much better today. He continues to amaze us with all his sentences (not just words), his smile, laughter and giving us hugs.
Although I feel like I am complaining in this blog, we move forward and make adjustments.... a learning experience that will challenge us to the end. That is why we have kids right??

2010-09-09T09:48:00.005-04:00

Yesterday was Nick's last spinal for his protocal of ALL T-Cell. I have mentioned before how much he has gone through and what a great child he is. He was great yesterday during clinic and only asked a few times for food. It was a long day for us, Nick was up at 6am and he did not have his procedure until noon. He could not eat before his procedure so basically the last time he ate was 6pm the night before. The procedure went smoothly and the fluid looked clear dripping out of his spine. We do not have pathology reports yet, but we remain optismistic everything is ok. When everything was done, Nick was snoozing and Greg & I just looked at each other.... We both know,it feels great on one hand to think no more chemo will be injected into his spine but then you think.... is that okay? Could he relaspe? Nick knows he is almost at the end of his treatment but I try to be careful in telling him he will 'never' have this done again. Greg & I are just not there yet.
He woke up quickly after the procedure and felt a little dizzy, but still tried to play his DS right away. We promised him lunch on the way home and we stopped at a small Italian restaurant with patio seating. Luckily Nick chose to sit outside and enjoy the warm weather. He did mention he felt like throwing up and then he was okay. His food came and after a few bites he did throw up... good thing we were outside. After that he said he felt better and continued to eat half his meal. This has happened to us before and I just think it is a combination of the chemo, his sleepy medicine and the fact he likes to get up right away after the procedure and leave.
He is back in school today and looking forward to seeing his friends. It will be interesting if he tells them about his day yesterday. His story usually goes like this: "I was not in school today because I had to get sleepy medicine so the doctor can stick a needle in my back. I know this because I always find a band aid on my back when I wake up." Another round of steroids start this week along with 6MP. We hope to enjoy this weekend with the great weather and Nick sleeping over at Papa Boston's house. Karen

Great Weekend and It is that time again

2010-09-07T09:21:00.006-04:00

Hello All,
We have a wonderful long weekend with the family and friends. Colby had his first football game and Nick will start baseball this week. We enjoyed having some friends over on Saturday night, 4-wheeling, and smores by the bonfire. Monday we took advantage of the sunny weather and headed to the beach for the day. The waves were great and Nick and Colby ditched their boogy boards for body surfing. My sister and he kids joined us and we had a fun time.
Tomorrow Nick is scheduled for his spinal (lumbar puncture). He receives this procedure every 18 weeks and I can not believe how fast the last 18 wks have gone by. This is positive for us because we are moving further out to acheiving our goal of being off treatment. It will be a long day for us. We go to clinic to access his port, get his counts down. He will receive Vincristine through his port and steroids and Methotrexate through his spine. We go down to the PICU recovery floor and can watch the procedure. The doctor will also take a sample from his spine and send it off to pathology to check for any leukemia cells. We usually have the answers back that day but could be on Thursday. Nick is not a big fan of getting his 'sleepy' medicine and always wakes up right away. They like to have him lie down for 30minutes after the procedure is down but he is usually up and telling us it is time to leave 15 minutes after he is done. We'll take him to lunch and then home to rest for the day. Since this is a start of a cycle he will also start 5 days of steroids and 6MP at home. Hoping tomorrow goes okay.
I forget how easy it is talk about the day tomorrow. Nick has endured over 12 of these procedures in the past 2 years, while on chemo, taking steroids, through radiation treatments and he can still have a smile on his face after we leave the hospital. Greg and I will be anxious tonight and go through the motions with Nick tomorrow but the constant worry will be there until we actually have the tests back.

First Day of School

2010-08-31T15:22:00.003-04:00

Hello,
I have to start the post with catching up on the weekend. The boys went to Auntie Lisa's for a sleepover (even Tom) and had a great time. Thank you Auntie Lisa. I heard all 3 boys were well behaved and had fun swimming in the lake. Greg & I had some time to and took advantage of the 4-wheeling trails behind our house. We headed out for a 3 hour journey.
Colby & Nick started school today. We were very excited to get them on the bus but also concerned how Nick would handle a full day of school. Last year, he was in the half day kindergarten program and was usually wiped out by the time he got home. Today, everything was fine. The boys are now playing legos and enjoying being inside, away from our heat wave. Greg took Nick to clinic yesterday and his counts were good:
WBC: 3.9
RBC: 10
Plts: 473 - high, not sure why
APC: 2,500
He is scheduled for his 18wk spinal (lumbar puncture) on 9/8. He is not happy that he has to miss school so early in the year but this could be the last one. We have a 3 day school week and then a nice long weekend. Take care.

September is National Childhood Awareness Month. Click on Cancer Facts for information on childhood cancer. There are ways to help out: donate blood and donate platelets. I will try to post more facts throughout the month....

Week is Over -- Great Weekend

2010-08-23T20:28:00.015-04:00

Hello All,
The week of steroids were okay. Nick was definitely very emotional and meltdowns came everyday. He was getting upset over the little things and then it just escalated to food and not looking at him the right way. One day I sent him to his room to chill out and he ended up throwing everyhing around. He then came down stairs and pulled one of our kitchen drawers out and dumping all the stuff. I was a little surprised to see this much aggresstion in him but then again, it has been almost 2 years worth of steroids in his body. After his sadness came the love and happiness, the Nick we know. He would calm down and give me a hug and tell me how much he loves me, and the family. He gets over it pretty quickly. That is the thing about kids, they forget and move on and be happy. A little challenging for the adults to see it, deal with it and know it will be okay. Greg and I try to talk to him about the episodes a day or so later and let him know it is okay to feel that way and we are here for him. It is not okay to take it out on his brothers and us and yelling. We try to do our best.... As we are starting to say, another round of steroids down, hopefully only a few more to go.
On a great note, we (Colby, Nick and I) spent Saturday night at Aunt Amy's house for a girls night and kid night out. We had a great time. Nick was in pain most of the time and luckily I brought all the pain pills I could. He went through most of them but really handlded everything well. We have figured out, as long as he feels comfortable where he is, then he can get through the pain. He is astute to his vocabulary that he did say he felt 'left out' and 'alone' at times and people do not understand his chemo. Every child was great to him, I know he was feeling different and wanted to express it. Of course, by Sunday morning he was ready to go and back to himself. Which bring us to clinic:
I decided to take my chances (keep up with me on this) and bring Colby, Joey and Nick to clinic. 3 active boys and the lecture about behaving came way before we walked into clinic. They were great. It was a long day today. I know the clinic was short on staff and we ended up there for about 3 hours. The boys were good because we had the Wii to play and plenty of snacks. Nick's counts were high... to be expected aftet steroid week, but also counts we have not seen in a while.
WBC: 10.3 - normal range
RBC: 10.3
PLTS: 416 -- that is high
APC: 7,400
We will see next week what the 'real' counts are because they will probably drop and level off. He is on 6MP still and the upped dose. Nick is looking forward to his playdate tomorrow and the last week before school starts. Wow, time for 1st grade and full day of school.
This Saturday the kids (yes, all 3) are going to Auntie Lisa's for a sleepover, with their friend Brian. They are very excited and looking forward to swimming in the lake. Tom does not know yet, (of course, he is a 2 yr old) and will hopefully be good for Auntie Lisa. We will post later on their adventure. Take care. Another week down.... yes, scary we are starting to talk about the end. We pray it will come. Take care. Karen
Oh yeah, above is a picture of the boys at clinic. We can not leave out Tom. Tom was running around in the rain outside and decided sunglasses were necessary. Enjoy.

Back on the Steroids

2010-08-18T08:37:00.003-04:00

We had a great weekend and definitely one to remember. We spent Saturday at Auntie Lisa's lake, going paddle boating and fishing. Sunday we decided a family day to the beach was needed. The weather was a little overcast and windy but that did not stop us from having a blast. The waves were huge and the boys brought their boogie boards. Nick was riding the waves and crashing in the water. It was nerving wrecking for me to watch him because he would go under and it took a few seconds before I could see him come back up. He would come up smiling and running back into the ocean. We have not seen Nick be so strong in the water and enjoy himself so much. The bigger the waves the more fun he was having. Colby had a rash on his stomach from the day before at the lake so the salt water stung a little. He eventually got through it all and joined Nick in the water. We've been telling Nick this week that when he feels sad or something does not go his way to remember the ocean and waves he road into shore.
I took Nick to clinic this week. It was uneventful.... which we always like. His counts were good and the doctor has decided to increase his 6MP dose, Vincristine, Methotrexate and 5 days of steroids. As I mentioned in the past, we would like him to be at 100% dose for all his chemo. The doctors have decreased it in the past because of his virus's and being neutropenic. Hopefully he will stay fever free during this cycle. He seems to break a fever everytime we increase the dose. Steroid week is only half way through and he seems okay. He does have little meltdowns over little things. We have 2 weeks left before school starts and I am looking forward to it. The summer has been great and I am sure the boys enjoyed not having a schedule and staying up late most nights. I will be meeting with Nick's teacher next week to update his 504 plan and already write down the dates he will be out of class for Sept.
Counts:
WBC: 4.2
RBC: 10.0
APC: 2,500

On a very positive side note: I spoke with Nurse Pat on monday about our Make A Wish Trip and planning it during the start of Nick's cycle. She said since we are in the maintenance phase of his treatment we can push the start of the cycle out 1 week. Yes, we can go on the trip and Nick will actually be PILL FREE the entire time.

2010-08-13T10:10:00.004-04:00

Just a quick update today. Yesterday, the boys, Joey and Megan went to Newport to set sail on a sailboat. The program 'sail away' was sponsored by Hasbro Children's Hospital. They all had a great time but were also scared as the sail boat sailed further out to sea. Aunt Amy and Tara (our wonderful sitter for the summer) accompanined the kids.

Click on this article. I can definitely relate to the entire piece. As we start to approach our date, there are still numerous questions that go through my mind. To think back over the past 2 years and see everything Nick has gone through and then wonder.... what will come next. There is always the looming words 'side effects' that come to my mind. We can not react to anything until we see it. Greg & I both believe we see some changes in Nick. The innocence was taken from him the day he was diagnosed and now he knows more at the age of 6 than most of us. He helps the nurses attach and unattach his tubes from his port and helps insert his blood into the tubes for the lab. The steroids really do a number on his attitude and feelings. We will continue our journey with the positive attitude and adjust how we see fit. Karen

Clinic

2010-08-10T12:01:00.002-04:00

Hello,
We are all well here. Nick is feeling much better and back to himself this week. On the way into clinic today Nick asked me when he was going to finished getting his medicine. I told we are scheduled to be finished in November and then he said: "So I do not have to go to clinic after that". I told, no, we will still go for updates and see our favorite nurses, right? He said: "Yeah, I will miss them if I do not see them." It is amazing how the people at clinic have become like family to us or maybe our security blanket is a better way to put it. So, yes, I have stated Nick's scheduled end date above but Greg & I do not really look that far out. The thought of it is exciting but scary at the same time. We are not ready to take the step into 'Life after Cancer yet', which is okay as long as Nick is doing well.

Everything went well with clinic. Counts are good:
WBC: 3.3
RBC: 10.0
APC: 2,600

He received his methotrexate and will start another cycle next week. I think I am organized with Nick's schedule but I just learned today that I am not. I write down the start of his cycyle's and when we expect his LP (spinal) to be performed. Well, I just found out I missed a week in his cycle and had to re-do my calendar. (No big deal, right). Well, it turns out that we will now be going on Nick's Make A Wish Trip at the start of his cycle and not at the end of it. We know how the start of it goes and how Nick feels by the end of the week. I can not believe I did this. We will still make the best of it and have a blast. It is just a bump we'll get over. Karen

Back to the Usual

2010-08-04T09:13:00.002-04:00

Steroid week is over and Nick is back to himself again. We had a wonderful time at the Red Sox game and the Picnic in the Park after. We decided to take the T into Boston and Colby was very scared to ride the train but once we got moving, he was okay. We did not get to the game until the 5th inning because we knew we were staying late. Nick was great up until the picnic. He was having a lot of pain from the steroids. We brought his codeine and morphine with us but ended up going through all of it by 7pm. We received blankets for the picnic and you can see Nick took advantage of them. Colby was running all over the field and really enjoyed seeing Blue Man Group play. We really wish Nick could of enjoyed the experience as much as Colby but we are thankful for the opportunity to go. (You just have to make the best of the situation).

I took Nick and Colby to clinic on Monday. The place was very busy and we there for about 3 hours. Nick's counts are good and he recieved his Methotrexate.

Good Week for Nick

2010-07-31T11:43:00.001-04:00

Nick completed his round of steroids for this cycle. He was pretty good this week, only a few meltdowns and lots of french fries to curve his appetite. One morning he cried for an hour b/c he wanted ice cream for breakfast and I told him to eat something healthy first and then he can have ice cream. It is amazing to see him turn into a different child when the meltdowns occur. You know he will snap out of it and forget all about it but watching him can be sad. He ended up having a sleepover at Papa's (Boston) house with his cousin Megan. They both had a great time and I believe getting him away from our house is good for him.
I received a call yesterday from the Make A Wish Foundation and they were given 4 tickets to the Red Sox on Sunday and the Picnic in the Park charity event after the game and she offered it all to us. We are very excited and the weather should good. We have never been on the field before and we are even thinking of bringing Tom. You might be wondering why they called us and I have not actually blogged about Nick's Make A Wish Trip. For us, it is to far out to think about. We are making plans, have our plane flight and know were we are going but I try not to get to excited until the date gets closer. Of course it is Disney World and we are staying at Give Kids the World. Check it out. I have heard some many wonderful stories about this place. We are still humbled by the generosity people give to help kids. There are our family, friends and the many foundations that have given so much to our family. We thank all of you who continue to support us through our journey.

Great Vacation

2010-07-27T06:36:00.000-04:00

We are back from vacation and had a great time. The weather was perfect and only rained one night. The week was very eventful and Camp Sunshine was filled with volunteers and loads of activities. At the beginning of the week we had NESN come and sponsor Camp Sunshine. Click on NESN for the quick show. Yes, you can see Greg & I walking around in the background. I was going to give an interview but decided the kayaks were calling instead. The boys had a great time. Nick was very tired in the beginning and ended up with a fever by Tuesday. I took him to the Portland ER where he received an antibiotic and we were able to go back to camp. Tom had blast when he was with us as a family. He had a tough time transitioning in the 'tot lot' but opened up by the end of the week. We believe the person who made the most of camp was Colby. He made friends and tackled some of his fears. He went on paddle boats, kayaks and bass pro fishing boat. In the evenings there were talent shows, masquerade parties and a dinner for the parents. Greg & I were able to relax and peek in our kids having fun.
I took Nick to clinic yesterday and everything was fine. I explained to the doctor how concerned we about these fevers that keep popping up. She said his counts were good and it was likely a virus so we are continuing the same dose as previous cycle. He received Vincristine, Methotrexate, 6MP and steroids.
I hope to post some pictures this week. Take Care. Karen

Camp Sunshine Here We Come

2010-07-17T13:00:00.000-04:00

We will be leaving in Sunday for our family vacation to Camp Sunshine. Greg took Nick to clinic yesterday for his 'Monday' chemo. It was only Methotrexate and his counts were good. He will now have a 10 day break (instead of 7) from his chemo. He was hesitant to go yesterday because where his port is located, the area is really sore for him. I guess between going to the ER and clinic over the past 1.5 wks does leave a good black/blue mark on the spot. He is back to himself today and the boys are playing with Michael. I am excited to take a break from blogging, work, and everyday chores for a little bit and just focus on the family time. Take Care. Karen

Back to clinic today

2010-07-14T14:00:00.000-04:00

Just when Karen writes that all is cool. Not so much! Nick woke up in the middle of the night and threw up. He had a low grade fever 99.4. He stayed in bed with me and Karen went to the couch. Nick then threw up again at 4am and his fever spiked to 100.3. Nick went back to sleep only to awaken at 5:30 and do it all over again. By 7am he threw up a fourth time and then his temp went to 101. Karen got dressed and brought him to clinic. Thankfully his counts were good. I don't know all of them as Karen just stated that his APC was 6900. He got some antibiotics and two bags of bolus to help make sure he does not become dehydrated and back home they came. Hopefully he gets through this quick and can keep on track so that he can enjoy his vacation next week.
Greg

Everything is Cool

2010-07-13T17:44:00.003-04:00

Tuesday, July 13, 2010Everything is Cool
It is actually very hot here in MA and we are in need of some rain. I do say cool because Nick is great. He finished his steroids on Sunday morning. He started complaining of a headache, his throat hurting on Saturday afternoon but we believe this is from his 6 yr old molars growing in. His dentist appt. was on Monday and they confirmed that a couple of them are starting to pop through his gums. I am sure it is sensitive and we were able to give him some Tylenol for it. He had a very busy weekend with the Wykoff family in town and the family sleeping at our house for the weekend. We enjoyed the friends coming over to join us on sat. night. All the kids had 4 wheeler rides on Sat. and Sunday.

I took Nick to clinic on Monday. It was very uneventful and the place was quiet. He recieved his Methotrexate and I booked him an appt. for this Friday. We are leaving for Camp Sunshine on Sunday and Nick needed to recieve his next weeks's chemo (Methotrexate only) before we go. On Friday they will access his port, check his counts and if everything is okay give him his dose. He does not mind because he knows we will be able to go on vacation as scheduled and not a day late.

2010-07-06T18:17:00.006-04:00

I am not sure where to start the post today: the fun stuff or the frustrating stuff. I will start with the frustrating and end on a happy note. The weekend turned out awesome and I will get to that in a moment. I am now at the ER with Nick because he spiked a fever this afternoon. He was warm most of the night but no fever. Greg brought him to clinic this morning and he was fine. His counts are pretty good to. He mentioned to them about just giving him an antibiotic because of last night and they said no, no fever. I brought him to the ER tonight. As usual his port is not accessed yet. The nurses spent about 35 minutes talking about the process (which should have alerted me to start with) and then proceded to try and access. The needle was not pushed in enough at all, not sure what she was thinking and Nick started crying. The whole process sucks. I am now waiting for a 5th floor nurse to come down and access him. I guess it will be a long night because we usually average at least 5 hrs after the port is accessed. I am sorry to complain and I think I should be greatful this is only the frustrating part of the whole process. I know we will not be spending the night. I am pretty sure he will get an antibiotic and be released.

Updated: Port accessed by 5th floor nurse, first try and she did great.

Onto the fun stuff: The weekend was a blast. As I mentioned before the boys had so much fun on the beach and jumping off the boardwalk. They told everyone at the party on Sat. We spend the weekend (yes, the older boys & Greg camped out) at The Holmes House. Thank you so much for having us. The kids swam in the pool and another milestone for Nick: he actually swam on his own in the deep end. There are definitely times lately I have said to myself: 'This kid has cancer?' It was great to see our friends and I know there were amazed to see how well Nick is doing. They had lots of questions for us in general and even some of the kids asked questions. The people who know me understand that I am not afraid to talk about Nick, the whole process and the fears we will always have. He is a strong little boy. Colby was fantastic this weekend and is enjoying his summer. He is excited to tent it again. My older sister Christa and her kids are up for the next 2 weeks so we are looking forward to the time we get to spend with them.

Happy 2nd Birthday Tommy

2010-07-02T20:08:00.004-04:00

Tom will be 2 tomorrow and our day is filled with fun, fireworks, pool and spending time with close friends. I have ordered an American Flag cake to celebrate with Tom tomorrow. I can not believe he will be 2. He was only 3 months old when Nicholas was dx and there were many nights I was not home with him.

The boys slept over Auntie Michele's house at the Cape last night and Greg, I and Tom drove down today. We had an awesome day and the boys ended up jumping off the bridge and into the water. Colby was very scared but once Greg picked him up there was no going back. Nick had Brittany hold him and two of them just counted to 3 and away they went. As everybody was packing up the beach stuff, I sat with Tom in arms for awhile. It felt so good to hold him and listen to the ocean. Of course as I thought back over the past 2 years and how much Tom has grown tears were coming to my eyes. He has adjusted to his surroundings and continues to challenge us each day. We love you so much Tom.

I forgot to mention that yesterday a playdate for nick turned into a Mohawk. He lookos so cute and it really suits him. I will post pictures of him soon.

Have a safe and happy 4th of July. Karen

Our Three Sons

2010-06-30T09:20:00.007-04:00

Wow! Our 3 wonderful boys. We recieved the pictures from Flashes of Hope this week and I could not resist uploading this one. Flashes of Hope came to Hole in the Wall over Mother's Day Weekend and took a bunch of pictures for us. They are a non-profit organization and their goal is to put smiles on kids faces and hold the memories of them. Colby, Tom & Nick - this picture truly relects their personalities.

You can see how far we come in year. The picture up above is 2010 and the other one is 2009 both taken over Mother's Day Weekend. Enjoy every moment with your children, they grow up to fast.

A normal day at clinic and some new athletic milestones

2010-06-28T14:19:00.003-04:00

Nick, Colby and I went to clinic today as Karen is travelling again. Everything was quite routine except that Nick forgot his shoes this morning (now before anyone blames me, I told him, "I saw your crocks outside go out and get them and get in my car". He didn't get them). So he was trying to hide his feet but to no avail as Lori the nurse came in a pronounced to all he had forgetten them. It was pretty funny. Counts are good. We are going to increase the methotrexate next cycle and probably the 6mp the cycle after that.
APC:2100
WBC:3.3
HGB:10.9
PLTS: 392
On to my second subject in the title. Nick rode his bike with Karen and Colby to Walgreens on Saturday. This is by far the longest bike ride Nick has ever gone on and I was expecting that he would be useless the rest of the afternoon but we had forgotten about a party at my sisters house so we packed the kids up and headed over. Nick, Colby, Joey and Brian all swam across the lake with Mitchel and Alex. Yes, across the lake. They all wore life jackets but swam the whole thing. It is not a short swim so Karen and Amy went and picked Nick and Joey up in the paddle boat while Mitch, Alex, Colby and Brian all started walking back with the snapping turtle that Mitchel caught. Luckily for them they were picked up by Mitchels friend and drove home. Not sure Colby or Brian understood that the walk was a mile with no shoes on. So Saturday was quite an adventurous day for the boys and of course Tom was hangning back at Auntie Lisa's beach trying to surf on some body boards. For a kid who turns two Saturday he sure has no fear! Happy 4th to all. Have a safe and great holiday.
Greg

2010-06-22T16:28:00.001-04:00

I can definitely state steroids were okay physically this week but not as much mentally. It is just one of the side effects we are worried about, his emotional state. He was feeling great by Mondy. We had a busy weekend with the boys…. I know you have heard this before, we like to stay busy and enjoy our time with family and friends. The boys ended their last day of school on Friday and it was off to see Toy Story 3 in 3D with Michael and Maggie. They loved the movie and I think Debbie and I enjoyed being inside in the AC, it was hot that day. Saturday was Colby’s baseball pool party at his coaches house. I brought Nick with me so he could play with his buddy Brady. Nick was so excited to go, but then decided he did not want to swim when we arrived and he would feel more comfortable going to Owen’s Bday party at the Kenshu Karate. I guess it was a good decision for all of us because he had a blast and was exhausted by the time he got home. He started to feel pain by late Saturday and of course slept with Mommy that night. We decided to go to the beach on Sunday for Father’s Day. Nick was excited to go (sound familiar) but once we got there he kept asking us ‘why are we at the beach so early in the morning, we should come later in the afternoon’. I had given him a Tylenol w/cod before we left and I think the medicine was catching up to him. Luckily he slept for an hour under the towel and woke up as our NICHOLAS. He was so happy, but decided it would be best to eat 2 hotdogs instead of swimming in the water. Colby and Tom loved the water and really had a good time together. Colby is our fish in water and Tom just follows the FUN.
I took Nick and Colby to clinic today. Colby was actually shy at first with everyone and was hesitant to see Nick’s port get accessed. (sometimes I need to take a step back and understand his feelings and what he must be thinking. I have grown so accustomed to it, like second nature). Colby is growing up and we are proud of the strides he has made with our journey and the adjustments we have made at home.
Nick’s counts were high, which we have not seen in a while. They are high because of the steroids (it can give a false read, but still okay):
WBC: 12.3
Red Blood Cells & Platelets: Normal
APC: 9,000

I believe the doctor will decide to increase his 6MP and Methotrexate starting the next cycle.

Happy Father’s Day to the most wonderful Father’s, husbands I know. My husband, my dad (Papa Boston), and Papa Charlie. We love the strength of our family has shown and continues to stay strong. Karen

Sorry for the quick update, I am in Penn. on business this week and just got online. I am traveling again next week, so Greg is holding the fort down.

Ugh Steroids

2010-06-17T14:48:00.004-04:00

We are half way through steroid week and Nick is good. He seems more down lately than usual and very sensitive. He is eating a lot and a mixture of all the stuff he usually eats. It is the last week of school and I am not sure if he is just so excited about everyday during spirit week or really not feeling well. He has complained the past 2 mornings that he did not want to go to school. He gets all dressed up in his clothes and then decides he wants to stay home. We are making him go to school since it is the last week and there is so much fun stuff going on. He did not make it to daycare all week either. Today was his last day there for the summer and with him being so upset this morning, I decided to have come right home after school. Of course, the wonderful daycare center completely understood.
It just times like these that I hate watching him change so much over a week period. I know he will be back to himself hopefully by Sat. or Sunday. We have a busy weekend planned with grad. & Bday & baseballs parties, I really hope he gets to go to it all. He is sleeping now and his brother will be home soon to play.

I found this on another Caringbridge site and it sums up what I am sure most parents feel:
When you hear of a child with cancer your heart immediately goes out to them and you can't help but feel sorry for them. Facing the mortality of your child has to be the worst experience any parent faces. As a parent of a child with cancer, the emotions you feel are like a ride on an emotional roller coaster. The bad times are likened to an extended bereavement and the good times are compounded, with joy and sadness at the same time. Your emotional state is somewhat heightened to the point of being hyper sensitive and extremely protective. The only way to get through the emotional roller coaster is to think positive and be positive about the whole situation. (This is easier said than done.) We are told by the experts, childhood cancers are easier to cure than adult cancers, although this is some consolation in the early days, it is short lived, when you learn more about the cancer you have and the cocktail of drugs needed to cure the disease. With each drug administered you have to deal with all the potential side affects, the range of which is frightening at best but terrifying in general. The effects of cancer on the family will test it's relationship to the limit, some families won't make it but the ones that do, I believe come out stronger for the experience. The most important piece of advice I can offer any family in this situation is to be honest with each other. And not to underestimate the child's understanding of the situation.

Last Week of School

2010-06-15T07:23:00.005-04:00

This week is the last week of school for Colby & Nicholas. We are so excited for the boys to finish this week and start summer vacation. I can reflect back in Nov. 08 when I was signing Nick up for kindergarten. He was dx in Oct. 08 and I was not sure if he would make it to kindergarten come Sept. I had the option of signing him up for half or full day. I originally planned on sending him full day but of course ended up signing him up for half day. Definitely a good choice, given the circumstances. He missed quite a few days this year but we know he is a very smart kid. We believe he has excelled in kindergarten and is now ready for 1st grade. We always have in the back of our minds side effects, especially ones from radiation. We will be taking him back to neuro psychologist sometime this summer for an evaluation. I really do not have much concerns for today, I believe he is right on course for his age.
His counts are good this week and the doctor has decided not to change his 6mp or Methotrexate dose for this cycle. He received Vincristine, Meth., 6mp and steroids. Yep, another steroid week.
WBC: 4.6
Red blood cells and Plts: normal
APC: 2,500

Take Care, Karen

Still Feeling Great

2010-06-07T19:43:00.002-04:00

Nothing new to report. Nick is still feeling great and with his doses lowered we can see the difference in him. His counts did not drop much this week as they usually do.
WBC: 6.7
RBC: 10.3

We do not want his counts to high as I have mentioned before and of course to low puts him neutropenic. It is finding the medium point where his body will tolerate the chemo and be able to keep his counts down that always seems hard for us. I am not sure next Monday if the doctor decides to increase the Methotrexate and 6MP, we will have to see.
We have two weeks left of school and then it is time for summer. I am traveling a bit for work this month but looking forward to our vacation in July. We will head to Camp Sunshine for the week. the boys had a wonderful time last year, eventhough Nick was on steroids. Keep praying for all our cancer kids. Karen

2010-06-02T07:29:00.008-04:00

I know it has been a week and a half since my last post. I guess no news, is good news. Nick was really good on his steroids last week. He spent most of Saturday in pain all day but was back to himself by Sunday morning. We were on top of his pain this time because Nick kept asking for the medicine. We decided to stick with the Tylenol w/codeine and avoid the morphine. We all had a great/busy long weekend. Nick started his weekend with a playdate at Brady's house. He had a lot of fun swimming and I always feel that is the best exercise for him. We ended our weekend by going to the beach on Monday with the Love family. The day was fun for the kids. We always try to load up the sunscreen on Nick, give him a hat and have him wear his T-shirt when not swimming. The beach experience is so different this year than last year. Nick did not have hair last year and always wanted to go to the beach. I know we were very nervous about going and being in the sun to long. We would leave for the beach early in the morning and be home before lunchtime. This past weekend we stayed until after 1pm. The reason Nick will always need protection on his head is because of radiation back in Dec. 08. The doctor had told us that Nick should never have his head in the sun.

I have to tell a story about Nick: On Sunday we were on our way to Auntie Lisa's house for a cookout and swim in the lake. While we were in the car Nick noticed he was bleeding on his leg. I could not look back but all I heard from him: "Mom, I am bleeding, my platelet count must be really low, I do not think I have any platelets left. I hope it stops bleeding soon." Of course I looked back immediately and it was a tiny scab he had scratched, with a little blood showing. We had a good laugh (knowing he would be fine), but it reminds us of how much Nick knows at the age of 6..... things he should not worry about.

I took Nick to clinic yesterday. His counts are really good and the first time in over a couple of months I have seen them this high:
WBC: 8.0
RBC: 10.4
APC: 5,500

The DS Update: We ended up buying Nick another DS (refurbished model) and then we found his. I found it on our kitchen counter behind the knife set, an unlikely place for it. When I asked Nick about it he said he had forgotten he put it there. He was hiding it from Tom. These are times when you just have to laugh about it and move on. Of course all the nurses at clinic were wondering if we had found it and were happy to hear he did find it. Nick's friend Alayna at clinic even made Nick a star with beads because she was sad for him. The family was at clinic yesterday and they played the whole time. I have to say Thank you to the Cote family for offering there DS to us.... very thoughtful of you all.

Nick is very comfortable with his Monday friends at clinic. We have met some really great people and while the whole journey is not fair, you know that you are not alone. Karen

Clinic Visit and Doses Lowered

2010-05-24T20:25:00.007-04:00

Hello,
We all had a great weekend. Greg & I went to a wedding and night away. The kids had sleepover's while Grammy watched Tom for the night. Thank you to Debbie and Aunt Amy for taking the boys, they had a great time and were very tired on Sunday. Grammy said Tom was wonderful and we thank you for taking his as well. He is at a great age and really talking up a storm. I can not believe he will be 2 in July. Colby marched in his first baseball parade and was excited to throw out candy to all the kids cheering them on. We actually felt 'normal' for the week and enjoyed the family time on Sunday.
I took Nick to clinic today. He was good but very upset to hear that his DS player was not there and we had lost it. We have looked everywhere for it and really thought clinic might have it. He was distracted playing the clinic's DS players with Alayna and together they teamed up to play games. His counts are good, still not as high as I thought they would be:
WBC: 3.9
RBC: 10.4
APC: 1,900
They have decided to lower the Methotrexate dose from 32mg to 25mg and the 6mp by 20%. The Vincristine will stay the same because that does not have an effect on dropping his counts. They believe Nick's bone marrow is just getting tired this late in treatment. They have seen this happen before and are not to concerned of dropping the dose. They are also checking his levels from the IVIG transfusions and we will see if he needs another one.

I am attaching an article Greg found from the Joe Gibbs (racing and former NFL coach). His grandson battled ALL and the article did a great job sharing the journey and how the parents felt. We can relate to a lot their quotes and how we felt at different time during the journey. They summed it up a lot better than I could.
http://sports.espn.go.com/rpm/nascar/cup/columns/story?columnist=smith_marty&id=5206059
Hope you enjoy it. Karen

Just Thinking Out Loud

2010-05-19T12:21:00.003-04:00

There are just some days that my mind drifts to my family and everything we have been through. The emotional roller coaster, along with the stress and watching your child day to day can catch up to you at some point. I think Greg and I feel that way at times. We understand there are many families out there not as fortunate as us to have close family, friends, donations and jobs to take care of Nick however we can. I am thinking today that Nick has not had chemo in his body for over a week now, nothing. It feels okay to take a break but also scary that his body does not have that poison in him to keep any leukemic cells from popping out. (for lack of better terms).
Nick is having a great week. He is on his 2nd day at Prospect Hill (daycare) and as much as I miss him being home, I am able to focus on work a little more. The daycare did call yesterday because Nick wanted to say hello. I really appreciate everyone there and working with Nick however they can to make him happy. He was excited to go back today after school. Socially I believe Nick is fine but how can you blame a kid that goes from clinic, to hospital stay, to home, to school and then daycare all the time to not be a little cranky about it. I guess that I just needed to get some feelings out today. Greg & I will be going to dinner next week with Parents from the clinic. It is a 'time out' event from the Tomorrow Fund for the parents. Nana offered to help us out and babysit, which will be nice to talk with some people who 'get it'.

Clinic Day

2010-05-17T13:39:00.003-04:00

Hello,
The weekend turned out to be great. Nick came home around 5pm Friday night. I gave tubs to Colby & Tom before Nick arrived and warned the boys it was going to be family night and we were staying inside. Greg & I felt Nick really needed one more night trying to stay germ 'free'. Nick agreed only if I let him play outside on Sat. and so that day Nick enjoyed hanging out with our neighbors. The Love family came over Sat. night for dinner and more playtime. Sunday, Nick headed over to Michael's and swimming. It was great to hear he finally put his DS down and got some exercise in.
Today we are at clinic. Nick just fell asleep and he is receiving the Pentimidine and IVIG. They pre-treat his IVIG with Tylenol and Benadryl and he is also on Zofran (anti-nauseau). It is amazing how much medicine, chemo and pre-treats he receives in one day. He is scheduled for Methotrexate (chemo) if his ANC is high enough.

Counts just came back:
WBC: 2.5
RBC: 8.8
APC: 1,200
ANC: around 400

He is still considered 'neutropenic' so they are holding his chemo today. We will just start another cycle next week. In this phase of Nick's treatment we do not make up any week he misses chemo, we just move on. Karen

Coming Home

2010-05-14T10:34:00.003-04:00

The plan is to have Nick discharged around 4:30pm this afternoon. He will still be on antibiotics for a week. The doctor did see a 'tiny' spot on his chest xray from Wed., so as a precaution we will start zithromax. His counts are a little better today:

WBC: 1.6

RBC: 7.9 (dropped but they do not believe he needs a transfusion)

ANC: around 200 - still waiting on the hand count

He is still neutropenic (under 500 for ANC) but the doctor believes it is just a virus and needs to run its course. Nick looks great and was running around the play room last night. Greg said he feels great today and of course wants to come home. If he does come home tonight we will be staying close to the house for the weekend and letting Nick rest. I will update later once I hear back from Greg on the final decision. Karen

Quick picture of Megan and Nick yesterday playing on the bed. Nick was proud to show Megan his port and how it works. Megan was a little scared of everything going on but then she warmed right up.

Update: Still here

2010-05-13T14:31:00.003-04:00

Hello,
We are definitely spending one more night. Nick's counts did not change to much but he has been fever free since this morning. He looks really good and thanks to a visit from cousin Megan and the Hole in the Group, his spirits are up to. Megan and Nick were able to go to the play room (they each wore masks of course) and play together. I think Megan really enjoyed Nick moving the bed up and down. Jeff, from Hole in the Wall came in and drew pictures on the windows and door of Nick's room. He is great with kids and had Nick laughing the whole time.
Counts today:
WBC: .8
RBC: 8.2 (down .4 from yesterday)
ANC: 144 (up from yesterday, 104)
The doctor said if he can stay fever free and still looks good then we might be able to go home tomorrow afternoon.

ER visit turned into a stay

2010-05-12T21:20:00.005-04:00

Hello,
I guess the excitement of the weekend was a lot for Nick. He started coughing yesterday and through the night last night. I kept taking his temp. and he was fine. He went to school today and was feeling tired after he got off the bus. Again, I took his temp. and he was fine. We decided to go to lunch at Teppanyki's and he did not eat much. He then fell asleep for a couple of hours and woke up around 3:30. He felt really warm and sure enough he spiked a fever. I called clinic to let them know we were going to the ER because it was to late to go through clinic. Of course Paula our nurse at clinic said she would come to the ER and access Nick's port for us if we could make it there before 4:30pm. Nick was not happy about leaving home and going to the hospital. At the ER his temp. was 104 and his heart rate was up 160. His labs came back and his ANC is 104... definitely neutropenic. I am staying with him tonight. We did not pack clothes, I guess thinking optimistically, Greg drove down and dropped some off for us. (Thank Nana for helping out at the last minute) We will see how his counts are tomorrow. His red blood cells dropped from 10.6 to 8.6 in two days, so not sure if he will need a transfusion tomorrow. I am thinking we will be here until Friday which really stinks because Nick has a performance at school in the morning. He has been practicing for his line and I know he will be very upset if he misses school. It has not been a big deal to Nick when he misses school but I know this time will be hard on the 6 year old. Take care, Karen

Clinc today and a quick look back at the weekend

2010-05-10T19:53:00.002-04:00

Hi all,
Nick did great at clinic today. His counts were good.
WBC: 4.3
HGB: 10.0
PLTS: 275
APC: 2200
He did not get another IVIG infusion as we thought...It is next week. I guess since he seems to be feeling better since we had our first IVIG we were ready for more. Another interesting note about the week was that Nick has not complained about any pain! Yehaaa! You are always holding your breath that last day of steroids wondering, when is it going to come. Maybe there is something to be said about your mental state that can block pain. If you read Karen's last blog you know where I am going with this. Yes, the Hole in the Wall Gang Camp was awesome. Awesome for me, awesome for Karen. She and I climbed the rock tower and then leaped off down the 350 ft. zip line. No big deal, for Karen that is. She is fearless. Me not a big heights guy, but I am quite proud of myself. Oh wait this is about the boys! Tom really was absolutely the most perfect almost 2 yr. old you have ever seen. I don't think he cried all weekend. That must have something to do with our "Family Pals" Beth and Sadie. Beth is the same incredible woman who we had the pleasure of leaving Tom with last year. Sadie is new to The Hole in the Wall Gang Camp but not new to the family. She has spent time at the Painted Turtle in California. Nick had a bit of hard time as is expected being on Steroids but he had is "flashes of brialiance moments" like at Mother's Day breakfast ( a big deal at Camp) he was one of only 2 kids who got up in front of everyone put the mic in his hand and wowed the crowd with his off the cuff ellegant praise of his mother. He was beautiful. I now come to Colby. What can I say about how incredible this place is for Colby. Karen said it perfectly, "Colby is made for Camp". He went from crying about Mom having to do the "Bushy tail" dance (who knows why) to being a star at stage night when he did a Karate display that ended with him breaking a board in half and I tell you it was cool! He thrives at this place, I guess everybody does. Sorry for the rambling, I hope that Karen follows this up and makes some more sense. It will take a while to come down but we will bask in it as long as we can.
Take Care,
Greg

Clinic and LP

2010-05-04T15:03:00.010-04:00

Hello,
Nick finished his weekend a very high note. Colby bought his new bike (from his Birthday money) and we moved Nick up to Colby's bike with training wheels. Nick was very excited and rode the bike for over 20 minutes. This is a big hurdle for us. Nick would ride his old bike about 2 houses down and then feel tired and not ride again. He would get upset because everyone else could ride bikes but he was not strong enough. His new bike has bigger tires and easy to manage. Nick is now out and about riding in our cul-de-sac. The little things for us make a difference.
For today: Spinal (LP) w/methotrexate and Vincristine through port, 5 days steroids (we decided not to wean this time, since it did not help him) and 6MP for 14 days. Colby was very curious and really wanted to come with us today. He has been watching Nick go through treatment for so long and I believe he feels like he can protect Nick at times. We explained to Colby at dinner last night that he could not eat anything this morning if he was going to go. The rule always is: if Nick can not eat, no one eats when we are with him. Colby agreed to it and let the boys stay up late last night with snacks. They both did great at clinic today and Colby only bugged us a couple of times for food. Nick had his LP in the PICU recovery, just like last time. We could stay and watch but I had to take Colby out of the room once Nick fell asleep. Colby was surprised to see Nick fall asleep so quickly after the medicine was injected into his port. Greg said the spinal fluid was clear, no results yet but what we want to see in it. Nick, of course, woke up early and wanted to jump up and move around. We left soon after and had a nice family lunch together. I asked Nick what he was dreaming about while he was asleep, his answer: "On a tropical beach with Mommy" ooh and then "Daddy and Colby picked us up by a boat". Happy thoughts.... Nick started feeling queasy at lunch and ended up throwing up the whole way home. We had given him Zofran in the morning, but I think the combination of the everything today just caught up to his system.
Greg & I were feeling a little relieved/drained by the time we got home........ but then the call came in: Hole In The Wall Gang Camp had an extra opening for Family Weekend this weekend and invited us to go. To say that there was not a tear in my eye, would be lying. I know it is corny, but with work, school, sports and clinic visits we have definitely been a little stressed and we are ready for a break. The boys always ask us when we can go back to Hole in the wall and I applied for this weekend but it was filled up by the time I sent in my application. Obviously the smiles on their faces when we told them, was awesome.
Happy Mother's Day to Nana and Grammy and all our moms out there this weekend. Enjoy every minute you can with your kids.

Rainy Day

2010-04-27T14:51:00.012-04:00

Nick, Joey, Michael,

Colby Megan & Maggie

Hi All,

I would like to first start by saying Thank you to everyone who participated in the Tomorrow Fund walk and thank you to all the people who donated on behalf of Nicholas. It was a rainy day but it did not stop the kids from jumping in the puddles and blowing bubbles. Throughout the walk their are posters of the children who are/were patients of the clinic. Nick was the first child this year. The Tomorrow Fund Clinic has been wonderful to us over this past 1.5 years. They consider each patient as part of their family and will not give up on anyone. As I have mentioned before, Nick feels safe at clinic, it is part of his life and will probably always be part of it. We enjoyed a family party Sunday afternoon back at our house. Greg took Nick to clinic on Monday after school. His counts were good, except his red blood cells:

WBC: 3.9

RBC: 8.5

Plts: 289

APC: 2,500

We will monitor him this week and see how he feels. If he is acting really tired and no energy we will bring him in for a red blood cell transfusion. The doctor has decided to give him one more treatment of the IVIG next month. They tested his level last week and he is just above the normal range, so as precautionary, we will go ahead with another infusion. Next Tuesday, Nick will have another Lumbar Puncture (spinal). He has one every 18 weeks, so Greg & I will be there with him. I believe we will be in PICU recovery during the procedure and be able to watch the whole time. We will tell Nick the night before because he can not eat or drink anything after midnight. I try not to think about the day until it arrives, we are always anxious waiting for the results and praying for the best.

On a side note, there is a family I have been following through caringbridge site because their son has ALL T-Cell. This little boy has endured so much and is losing his battle to leukemia through a rare chromosome disorder. Nick was tested for this chromosome at the time of his dx and he does not have it. This family really needs lots of prayers to get through the next few weeks. We are so greatful that Nick has been strong and his body has accepted the chemo to date. www.caringbridge.org/visit/caseydesombre

Colby's Birthday and The Tomorrow Fund Stroll

2010-04-24T08:20:00.004-04:00

Hello,
The kids have had a good week. Auntie Michele had them for a sleepover and I know they had fun. Nick was able to go in the jacuzzi and I am sure it felt good on his back. Colby was at Karate camp yesterday and had a blast with his friends. Tomorrow we will participate in the annual Tomorrow Fund Stroll for Nick's clinic. We are very excited to go and have our friends and family with us. http://tomorrowfund.org/ If you would like to read about the walk and the Tomorrow Fund, I have attached the link. We are team 'Nick Dragon' for tomorrow and if you are interested in donating, please reference our team. I will post pictures next week.

Nick is feeling good this week. He has developed a really deep cough and we have been giving cough drops for it. Hoping it will pass and not develop into anything. He has also complained of hand pain and we are not sure why. I think it is muscle spasms but we will ask at clinic on Monday. Take care, Karen

School Vacation

2010-04-19T15:40:00.004-04:00

Hello,
Nick did very well with the steroids this time around. He did not have a huge craving of anything but did favor cheese, crackers & pepperoni. We weaned him off the steroids over the weekend and we believe it did not make a difference. Nick had a melt down on Sat. because he wanted a sleepover at Joey's house and we said no, not tonight. Aunt Amy agreed to take Nick & Colby last night for a sleepover and after Joey's birthday party. Nick was good at the party but once we got to Amy's house, he fell asleep on the couch. He pretty much slept the rest of the afternoon and we asked him to come home with us when we where leaving, but he said no. Amazing that Nick is not fazed by the fact he slept through his whole sleepover while everyone played around him. We brought morphine and Tylenol w/codeine to help with the pain if needed. We briefed Amy on the timing and when to give it and then we headed home. I never heard our phone ring last night (come to find out it was not working) and figured it was a good night..... not so much. I guess Amy was up with Nick some of the night because he was in pain. She ended up giving him 2 morphine (half) pills and the codeine later in the evening. Nick woke up this morning feeling great and has not had pain all day. We think we know why he is in pain but it is a lot of pain for a short period of time. I spoke with Nurse Pat today and told her I did not think the weaning was worth it and he only ate more during the extra two days. I am not sure if we will do this again for the next cycle. Thank you Aunt Amy for being with Nick through the night.... you got first hand experience of our Nick.
Today was clinic day and Colby came with us. The place was very busy with school break and all. We ran into a family who is back... their daughter, Samantha (3) had a brain tumor over a year ago and was confirmed cancer free last summer. They are back now because Samantha just had 3 tumors removed from her brain and has an aggressive form of cancer now. This is the first family we know who is going through the process for a second time. Please say an extra prayer for this family. Today was their first day and I know the mother was pretty upset. Colby was able to distract her brother, Ethan, and they played the Wii together for a long time. We are looking forward to the Tomorrow Fund stroll this weekend. We are team 'Nick Dragon' and we hope for good weather.
Nick's counts:
WBC: 5.6
RBC: 10.6
Plts: 153
APC: 2,900
Take care, Karen

2010-04-13T11:34:00.002-04:00

Hello,
Nothing to exciting to report this week. It is always a great week when there are no pills to give and Nick can eat whatever time he wants. This past weekend he was feeling great and back to himself again. Monday Greg took Nick to clinic in the afternoon. His counts were good, that's about all:

WBC: 3.3
RBC: 9.6 (normal: 10.6)
Plts: 127 (normal: 150-400)
APC: 1,800

We are not sure why his platelet count is low, we have not seen it this low in a long time. His APC is also on the low side considering he had his 6 days off at the end of the cycle. The doctor said it is okay and they will continue to watch his counts. He will receive another dose of the IVIG next week and his potamamine (monthly antibiotic) next week. He started his cycle yesterday and received: Vincristine, Methotrexate, 5 days of steroids and 14 days of 6MP. The doctors have decided to stretch his 5 days of steroids into 7 days and wean him off the medicine. They are concerned about the level of pain nick feels we he ends his dose, so we will try it this time around and see if Nick feels more comfortable. I am sure this will also keep Nick's appetite up for a longer period of time.
Colby's birthday is coming up in 2 weeks and the boys will no longer both be 6. I think Colby is ready to be 7 and of course have his Karate party. The boys will start school break next week and some much needed time off. Karen

Great Weekend and Quick ER Visit

2010-04-06T08:44:00.002-04:00

Hello,
I have to say that I am finding it hard to blog..... I would like to keep the Happy Birthday blog up for a long, I do not want it to be pushed down. Nick is 6 and he had a wonderful birthday. We took the boys to the movies to see The Wimpy Kid. We were a little skeptical about the age bracket for the movie, but the kids really like it and were well behaved. Then we came home, boys played Wii and then onto cupcakes and ice cream. Nick received his 'big gift' from us which was a spy camera ATV360. He has been asking for this for a while now. Saturday was a beautiful day and the kids played outside all day. Nick stayed in for most of the day, I think he was worn out from his birthday. He took a shower right before dinner and then started having the chills. He said he was freezing even though it was 70 degrees outside. Sure enough, by 6pm he was spiking a fever. I took him to the ER. He had the best port access at the ER for the first time. The drew blood on the first prick and the nurse was great. His counts ended up being okay so he received an antibiotic and were sent home.
Sunday we had scheduled to go to Auntie Michele's house for Easter dinner and an egg hunt. Greg took the 2 boys and I stayed home with Nick. He was tired from the ER visit and we felt it would be safe to keep him home for the day. It was a good thing we did because he slept for 5 hours that day and feeling great once he woke up. Monday Greg took him to clinic and his counts were improved from Saturday night.

Quick story before I sign off:
Saturday: Nick and Joey were playing outside and decided to get a Popsicle out of the frig in the garage. Joey grabbed one and went back to playing basketball. I noticed Nick was lingering around the frig and I asked him what he was doing. He just replied and said nothing, with a smirk on his face and then he headed inside. Sunday: Greg comes home with the boys and he noticed the name Colby written on the frig with a black sharpie pen. Greg could tell right away it was not Colby's handwriting. Nick was at the table eating and Greg asked him if had written on the frig, his response: "No, but I bet the person that did that really regrets doing it."

HAPPY 6TH BIRTHDAY NICHOLAS

2010-04-02T08:36:00.004-04:00

Our boy turned 6 today. We are so proud of Nicholas! Our family tradition is the birthday person gets 'breakfast in bed'. Nick told me last night he would like to have breakfast at 7am. To our surprise he stayed in his bed all morning until 7am and we brought his tray up.

Above is the picture of Nick patiently waiting for his breakfast. He is so wonderful and I can not say enough about how happy we are today. We are going to enjoy the day at the movies, decorating eggs and finally having cupcakes. I'll post more pictures later.

Exciting week for Nick

2010-03-31T08:27:00.002-04:00

Nick had a very routine visit to clinic on Monday besides the fact that he went early due to throwing up when he got to school. After clinic he threw up again but never really felt bad besides those two moments. He probably got sick from the morphine and the chemo but who is to know. Nick had a little pain over the weekend so we did our normal maintenance...start with tylenol w/ codeine follow with morphine if that is not enough, ice packs anything to relieve it. Karen met with Nick's doctor on Monday and she had some concern that he should not be feeling this much pain so we will probably try and wein him off the steroids next time and see how that goes. Nick has a single mindset this week. Friday is his birthday and he turns six years old. Where does the time go. He is having a sleepover with Michael, Joey and of course Colby. They are going to go to the movies and then color easter eggs. It will be a fun evening. I think there might be some tired boys on Saturday.
That is all for now...If you see Nick wish him a happy 6th Birthday!!

Long Day at Clinic on Monday

2010-03-24T19:21:00.007-04:00

Hello All,

I have to start out saying that we had a great Sunny weekend and had fun playing. My friend from college and her family came down from Maine for a visit. Her little boy, Dawson is the same age as Tom and the 2 of them had so much fun together. It was great to see you Frannie. Nick was feeling great all weekend and he did go to school on Monday. Greg & I both took him to clinic on Monday. I was not suppose to go and Greg was home from work, but at the last minute I changed my mind. I think was concerned about the IVIG infusion and being the first time, I just had to go and be with Nick. We ended up being at clinic for over 4 hours, definitely a long day. Nick was scheduled for: IVIG, monthly does of Pentamine, Vincristine and Methotrexate. They also gave Nick Benadryl and Tylenol to pre-treat the IVIG in case of an allergic reaction. Just thinking how much chemo and other medications that were administered to Nick all in one day is amazing. Of course Nick was great and took a nap under the 'warm' blanket. The clinic has a blanket warmer and the nurse brought him a pillow to relax. Nick even took his pills w/o being coated with the Starburst. On top of everything Nick has started on 5 days of steroids and 14 days of 6MP. The doctor lowered his 6MP dose because he was neutropenic 2 weeks ago. The 6MP is the first chemo to be adjusted according to his counts and how much he can handle. I am not sure when he will go back to the full dose.
Counts:
WBC: 4.3
RBC: 10.9
Plts: 286
APC: 2,500

I am constantly reflecting back on Nick's life and our lives over the past year and a half and everything we have been through. People always ask us, how do you do it all? How can you handle a job, taking care of kids, and then 'Nick'? The simple is we just maintain. The real answer is we have been blessed with a strong support system from our family and friends, a strong family bond and Nick to keep us going. We do not have a choice but to keep fighting hard and keep believing. Not everyday is going to be how we would like it, but that's okay for us, we have learned to be very flexible and enjoy our time together. Anyways, I thought I would share how our world ticks.
The steroids are going okay this week and we actually forgot to give it to him this morning. I believe this is the first time we forgot and we can make it up at the end of the week. We will watch for the pain to come and hope to make Nick comfortable. Take care, Karen

2010-03-19T09:47:00.003-04:00

Just a quick update today. Nothing new to report. Nick is great and really feeling much better. When he was admitted to the hospital last week, they stopped his 6MP dose, so he has been off this pill for 2 weeks now. I really thinks it make a difference on how he feels. The weather has been great and we might actually hit 70 degrees this weekend. It's time to bring out the baseball hats for Nick and he is loving that. We bought so many different baseball and beach hats last year due to his lack of hair and protecting his skin, that he is used to them now. He left this morning for school wearing Red Sox. We hope to enjoy the weekend and have lots of outside time. Take care Karen

Quiet Weekend and Clinic Today

2010-03-15T20:23:00.005-04:00

Nick came home late Friday afternoon. He was very happy and understood he could not go skiing but chill for the weekend. He is so smart and with a smirk on his face convinced me to stop at Game Stop for a game. He picked the new Mario Wii game and I will say it was a great purchase. He played it all weekend. Michael and Debbie came over for pizza on Friday night and the boys enjoyed the time together. On Saturday, my mom and Joey came over to stay for the night. I had a little time away and the boys enjoyed playing games together. Greg and Colby came home on Sunday afternoon and they had a great time. Colby learned how to ski and playing with his friends. Nana & Papa Charlie had a sleep over with Tom on Friday night. I think Papa is still recovering from our Tornado Tom. (thank you)

Nick was a little shy to go to school today but I showed him all the wonderful get well cards the kids made for him. (Thank you kids, you do not know how much it means to us) I explained how much they missed him and he was ready to go. When he jumped off the bus today there was a smile on his face. We understand how tough it is to get back into a routine after a roller coaster week. We know he feels comfortable at clinic and the hospital and then finding his niche at school can be tough. His teacher is wonderful and helps out however she can.

Clinic was good. His counts are still pretty low:
WBC: 2.8
APC: 1,500
ANC: 800
In the hospital last week they took blood and checked for his antibody levels. This is a typical test taken every once in a while for children under going treatment. His last test was normal. Today we found out the results and it is low. He will receive an infusion of IVIG. I know our friends who are going through our journey understand this medicine. This is the first time Nick will receive it. It is to boost his immune system. His body is tired and that is the best word to sum it up. The multiple of virus's during the winter season and the pneumonia has really hit his system pretty good. The chemo brings his immune system down and he does not have enough immunities to fight all the outside germs, all the time. The doctors at the Tomorrow Fund have done a wonderful job through his protocol and giving him the right treatment. Greg will take him next week for his scheduled visit, start another cycle and receive the IVIG. Karen

Definition for IVIG:
Intravenous immunoglobulin (IVIG) therapy is helpful to some people with primary immunodeficiency (PI) because it temporarily replaces infection-fighting antibodies that some PI patients are missing

IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients who have decreased or abolished antibody production capabilities. In these immune deficient patients, IVIG is administered to maintain adequate antibodies levels to prevent infections and confers a passive immunity

Day #4 - Scheduled to go home

2010-03-12T11:12:00.004-05:00

Hi All,
We should be going home today. Nick is feeling great but his counts are not exactly where we would like to be. His WBC is now 1.9 (yesterday 1.8) and his ANC is 380. (should be 500 to be released) I am waiting for the Doctors to come in and give me the protocol for leaving. They know Nick is eager to go but we will have pre-cautions to. I am thinking just living in a 'bubble' for a day or two so he will have a full recovery. I am sure Nick will be sent home with some antibiotics to, but as long as we can go home, we can adjust. Nick is already trying to line up playdates and really misses his friends. This will be the hard part, small visits at a time. I'll post more later.

I forgot to mention that over a month ago we booked a ski trip through Colby's Karate class to Stratton Mtn. Colby is so excited to go and we never book events a head of time because of Nick. This time we took a chance. We were hoping Nick and I could go up for the night (tonight) and then ski on Saturday and then come home. Nana & Papa Charlie are taking Tom for his first over night sleepover. The goods news is that Greg & Colby will be leaving to go up to the mountain today. Colby is taking a ski lesson tomorrow and then go tubbing. Nick is bummed he can not go, but he will get extra attention at home, so hopefully it works out for both of them.
These are the times that upset Greg & I personally, we can not be together as a family, but we know Nick is fighting and as long as he continues, we will beat this.

Day #3 In-Patient

2010-03-11T10:28:00.003-05:00

11:30am Update:
Nick's ANC is 280. He is moving in the right direction, which is good. They will check his ANC again tomorrow morning and hopefully be able to go home.

First Update of the Day:
Just a quick update because I do not have all the information. We think Nick's fever has finally broke, he did not spike again after last night. His stats are great and normal, still no need for the oxygen. He is still on antibiotics and they not introduced any new ones. He will definitely be spending tonight at the hospital and maybe a possibility of going home tomorrow. We do not know his ANC number yet, be know the white blood cells is 1.8, not a big jump from yesterday (1.1), but at least moving in the right direction. I will be heading over to the hospital this afternoon and spend the night with Nick. The child life specialists are keeping Nick active and giving him projects to do. Yesterday we made a truck out of wood and nails and last night he built another Lego car with Greg. Today he has been playing the Wii a lot. I am hoping that tonight we can venture out of his room for a little while and down to the playroom. It would be nice to change things up a bit, but it all depends on his ANC number. I'll post later today and let you know how we are. Thanks for checking in. Karen

Day #2

2010-03-10T08:48:00.007-05:00

9:30pm
The afternoon was good for Nick. Greg picked Colby up from school at lunch time and brought him to visit Nick (of course he was showered down before the arival) Nick enjoyed the visit and ended up falling asleep due to the Benadryl before the Vanco. I spoke with Greg at 6pm and Nick was feeling good, ate some dinner and they played Wii and legos. Greg called at 8pm and Nick spiked another temp. 102. He is sleeping and received some Tylenol. The doctor did not hear any crackling in his chest and believe the pneumonia is clearing. He could be battling a virus but with the fevers we have to take pre-cautions. They might add in the Azithromycin to cover everything. The ups and downs keep us worried. We will see how he does tonight and check his counts again in the morning. I forgot to mention that we stopped the 6mp pill for now. Nick had 6 more days on this and then a week off, before the start of his next cycle. The 6mp brings his counts down (which they already are) so it stopped for now.

1:30pm Update:
Just a quick update. Nick is feeling better this afternoon and he ate some lunch. He took the oxygen off, for a break, and his levels stayed normal, so he is oxygen free at the moment. They still have him on the antibiotics and Tylenol, so he does not have fever. He is sleeping now from another dose of Benadryl, before the Vanco. We will see what tonight brings and hopefully he will his counts will improve. The actual (hand count) ANC is 100, same as yesterday.

First Update of the day:
Nick had a good night sleep last night. Yesterday he spiked a fever at 6pm and then again this morning at 3:30am, which is a concern. He is on 2 antibiotics and this morning the resident was instructed to give him another antibiotic, Vancomycin. Over a year ago when Nick was in-patient for his 24hr drip of Methotrexate he ended up getting a fever and the antibiotic they gave him was Vanco. He ended up having an allergic reaction to the drug and he has not had it since. The plan this morning was to give him benadryl prior to Vanco and drip it in over 2 hrs. The drip seemed to go fine but he just started spiking another fever. I am not sure what is causing his fevers because the antibiotics he is on should be taking care of the pneumonia, so there could be something else going on. His counts barely moved from yesterday, which I expected and his ANC is around 154. So today we wait, monitor his oxygen levels, heart rate and watch the fever. We are still very concerned and will keep you posted if anything changes. Karen

Nick surprises us with Pneumonia

2010-03-09T17:19:00.005-05:00

Update: 9:30pm
Nick is feeling better. This afternoon was very busy. While Nick was sleeping his heart kept climbing and a fever spiked. We gave him Tylenol and after 45 minutes he was actually worse. The doctor gave him some fluids through his port/IV and motrin on top of it. This seemed to work really well and his fever is gone for now. His heart rate is down to the 130's (they were up in the 170's) and he is up watching TV and playing DS. I will be keeping a close watch on him tonight and checking to see if the fever comes back. He will probably receive more fluids later tonight to make sure he is hydrated enough. When I say more fluids, I mean a whole bag of IV solution, he does have constant fluids going through his port currently, they just increase the flow.

Hi All,
We got through the weekend pretty good and with the nice weather on Sunday we enjoyed a family day outside. Greg took Nick to clinic yesterday and he was feeling great. His counts were a bit low, but okay to receive Methotrexate. We usually see his counts high after a week of steroids and then he starts to bottom out over the 2nd week and then feel good by the 3rd, before the cycle starts over. His counts on Monday:
WBC: 3.9
RBC: 9.9
APC: 2,200
Last night he was over the neighbors house playing with the boys in the neighborhood and was great before going to bed. He said he felt some leg pain and we gave him morphine thinking it was from all the playing around he did. He woke up in the middle of the night coughing and Greg checked him and he felt fine. This morning he was very sleepy, when he is usually the first one up. I took him temperature and it was 103, we could not believe it. We woke him up a little and he had a head ache so I made the decision to give him some Tylenol. (If you remember, we are not suppose to give Tylenol until we call into clinic). He was very sweaty and just fell back asleep. After Colby & Tom had left Nick seemed better. His temp. came down to normal and finally woke up at 10am. I knew we were heading to clinic to just check on his counts and I was thinking he just needed some fluids. The nurse checked him as soon as we got there and she heard some 'crackling' in his chest so we were sent for an xray immediately. They accessed his port, took cultures and started him on antibiotics.
To our surprise we found out he is neutropenic and has pneumonia. His counts in one day changed to:
WBC: .8
RBC: 10 -good
APC: 300
ANC: 100
The ANC is a percentage of neutrophils he has in his body to fight infection, basically he has VERY little. This is main reason he has been admitted, to keep him in a room and away from the bad germs. He has received 2 antibiotics and one more may be coming. The doctors are trying to stay a head of this infection and keep monitoring him.
Greg & I are very scared. This is the first time in Nick's whole treatment that we have seen him this sick. He has been sleeping most of the day on and off and I think he does not really care he has to stay in the hospital, he is used to it. Greg had to bring overnight clothes for us, since I was convinced he was okay and I did not pack any, I should have known better. They have him on oxygen and we just woke him to give him another dose of Tylenol, his heart rate is spiking some. Please pray for Nick in hopes this infection is gone soon. Karen

2010-03-06T20:46:00.009-05:00

It is weird to blog for me when I see Nick feeling so well, from the last update. His steroids definitely kicked in early this week and Greg took him food shopping right before the first dose. We try to figure out what he will want to eat during the week. Greg came home with a good mix of food. It turned out Nick really wanted Tostitos and Bagel Chips this week. We went through 2 bags of each and then I headed to the grocery store for more on Friday. Of course, rushing through the store I ended up buying the jalapeno tostitos chips and realized when I got home it is was wrong. Nick also added a couple more foods into the mix, so it was another trip to the grocery store.
All of that, with making his pills is okay to handle. If you remember we have a great way to make the pills. We take a Starburst candy, put it in a paper cup (the ones you find in the hospital or our brother-in-law (Mark) gives them to you, and melt it for 30 seconds. It is hot and we stick the pills in it and them form the pill together. The candy hardens and then Nick takes it. He thinks it is candy, but he also knows the effects of it. He does ask sometimes, 'What am I taking this time, chemo, cranky medicine or pain medicine? We always try and tell him exactly what he is taking, so he knows how he feels. We have learned from the beginning to be honest with him and it works in both ways. He knows what is going on, but he is also only 5 years old and should not have to understand all of his treatment.
Which brings me to today. He woke up this morning feeling really good. After 2 bowls of tostitos and a bagel he complained of back pain. I immediately gave him some Tylenol with codeine, trying to get a head of his pain. Colby was on a play date (thank you, Darcy & Jim) and we decided to take Nick & Megan (cousin) to Dave & Busters. I gave him another Tylenol w/codeine before we left but after 2 hours he was ready to go home. The pain increased and we ended giving him a full morphine pill. It is frustrating because we are scared of the pain medicine and giving him to much but it also stinks to see him in pain. We have done a better job of just giving him the whole pill instead of the recommended half pill. It is not fair to see Nick go through so much pain and try to play as well as he does. Right before bed tonight Colby & Megan decided to play Candyland and Nick actually got off the couch and played with them. He won the game. (no cheating either). You can listen to him breath heavy and trying to get through this. The boys and Megan are all sleeping in Colby's room, but Nick is still having a hard time.
I know tomorrow will be a better day, it is just the minutes and hours that pass by and waiting for him to feel better. This is the true feeling in a day of a child in pain.
The memories of these days is that Nick had fun, won some tickets and came home with some prizes, with a smile. Take Care Karen

All is Quiet

2010-03-02T10:16:00.002-05:00

Hello,
We had a good week and weekend. The boys have been getting along so good and playing really well. Over our school break we decided to buy bunk beds for Colby's room. He had been asking for them and likes to sleep on the top bunk. We were also having an issue with Nick and constantly finding his way in our bed. Nick did not like sleeping alone and I guess his bed was uncomfortable. He was so excited to see the bunk beds and very happy to sleep on the bottom bunk. The boys are also very good at bedtime. We had a quiet weekend and lots of play time with Joey & Megan.
I took Nick to clinic yesterday and it was uneventful. Nick counts were good, on the normal side.
WBC: 7.7
RBC: 10.4
Plts: 300
APC: 6,300
Nurse Pat has decided to increase his 6MP dose. Nick started a new cycle this week, Vincristine, Methotrexate, Steroids (5 days), and 6MP (14 days). We decided to tell Nick that he was on his 'Happy' pills this week, instead of the 'Cranky' pills. Not sure if it will help with the emotions, but we'll try. Take Care, Karen

Good Day at Clinic "The House is still Standing"

2010-02-22T20:57:00.002-05:00

Hi all,
Nick had a good day at clinic today. Laurie actually took care of him which I think is her first time, definitely with me. I do believe that the staff see's me coming and uses the opportunity to try new things out. Karen probably asks a few more questions than I, but no worries everything went smooth. Nick didn't care who was doing what. How far he has come. He never ceases to amaze me. Counts were fine...I don't have them with me so you will have to take my word on that. It really has been a while since I have posted and to be quite honest even read the blog. (I might pay for that one, should I delete it???) No. I will just say that Karen has come quite a long way. The site looks great and quite informative. You did a great job hunny! Karen can't be with us tonight because she is in Racine Wisconsin. Working her butt off as usual. Some how all the boys are in bed and things are quiet, so for now the house is still standing. Hope I didn't jinx myself. Thanks Karen you have done a great job of telling Nick's story. You show how beautiful and strong our son is.
Good night,
Greg

Clinic

2010-02-18T13:26:00.003-05:00

Nick is feeling much better and back to himself again. The roller coaster of pain, emotions, sadness and then smiling seems to be a vicious cycle at times. You have to keep reminding yourself that tomorrow is another day. Which brings us to the past couple of days. Tuesday, we had fun playing in the snow and 4-wheeler rides with dad. Wed. was clinic day and Colby came with Nick and I. The boys were fairly good during the time there. They each made a Mardi-Gras mask and played the Wii together. Nick's counts were great:

WBC: 5.7
RBC: 11.1
Plts: 350
APC: 4800

Nurse Pat did notice that has thrush in the mouth and he will be on an antibiotic for 2 weeks. This can be painful for anyone, if not caught right away. Luckily, Nick just has minimal amount of the infection and no pain. It is just another pill for him. After clinic I took the boys to Dave&Busters for some games and food. Debbie, Michael and Maggie met up with us and the kids had a blast. Debbie (so bravely) invited Colby & Nick for a sleepover last night. The boys were so excited and I believe were well behaved? They came home this morning and talked about the sleepover for a long time. The imagination of 5-6 yr. old boys is pretty funny and keeps us entertained. Now the boys are off to the movies with Auntie Michele and ice cream after. These are the days we cherish and seeing the smile on Nick's face all morning makes me feel relieved. He is tough and we will keep fighting. Karen

On a side note, below is really good source for kids to understand Leukemia, the medicine, port and how the body reacts. It is simple and to the point. You can read the book online (no need to purchase). I know some of our friends have mentioned their kids had questions about why Nick is sick. Hopefully this can help answer some of them. I know I read this book (a couple of times) to Nick & Colby, during the beginning part of our treatment. It really helped Nick understand what was happening to him.
http://chemo-to-the-rescue.com/

Pain and Locks of Love

2010-02-14T13:20:00.004-05:00

Hi All,

Just a quick update for the weekend. Nick did so well on the steroids and his emotions. I know it is hard and definitely uncontrollable at times, but handled the week very well. On Friday night he fell asleep in our bed and woke up screaming in pain. His legs hurt, which is typical for him right after ending steroids. It took us almost 2 hours to get the pain under control. We gave him Tylenol w/codeine and morphine. We explained to Nick that as soon as he feels pain, we need to give him medicine. He said he was in pain early in the night but felt he could handle it then. By the time we tried to control it, he was in so much pain. No matter what we go through, it SUCKS watching your child scream out in pain, knowing there is not much you can do. You just wait, sit with him and hope it goes away quickly. It was pretty much that way all weekend. The pain came and went and he would begging for more pain medicine. We decided to stick with the Morphine since it is working best. He feels better today, but still not at 100%. He is getting a running nose and we hope it is not another virus he is catching. The kids have a week off of school, so hopefully we can fill it with some play dates this week and have Nick feeling better.

On a side note, my sister (Amy) and I had 10 inches of hair cut off and donated to Locks of Love. We have been growing our hair out for almost 2 years and it felt so good to finally be able to cut it. Little things we can give back during this battle helps us feel good. As we said in the hair place, it feels like 10 pounds is gone. (If only it were true). Karen

Steroid week almost over

2010-02-12T09:22:00.002-05:00

Hello,
We have had a good week on steroids. (How often do you hear that?) Nick was happy most of the week and even went to school everyday. I do not believe he has made it to school for a full 5 days during the week of steroids since the beginning of school. He was feeling a little sad this morning but I reminded him that next week is school break and today they are having a Valentine's party, so he would have fun. He will not go back to clinic until Wed. of next week for Methotraxate. We are looking forward to the week off with the kids. I took a couple days off from work, so looking forward to hanging out as a family. Nothing to exciting going on here. We needed some quiet this week. Take care and thanks again for everyone's support and prayers.

Thank You

2010-02-09T09:28:00.004-05:00

I would like to say thank you to everyone for your support and prayers over the past couple of weeks. We had so much help last week, especially Grammy, helping with Tom, that is has not gone unnoticed. We are so lucky to have our family close by and there to help out when needed. Thank you to our friends for your support and understanding.

We are finally back to healthy kids again. Nick is much better and almost back to his funny self. Tom is definitely back and talking up a storm. He is very happy all the time and likes the remote controls the best. (Must take after dad). The weekend was great. The boys went to a Reptile Birthday party. I will post some pictures as soon as I can. They held a snake, skunk, scorpion, flying squirrel and many more animals. It was a fun night and really good to see Nick finally laugh again. On Sunday, Greg & Colby headed over to the Nasuti's house for the 'big game', Nick played with Michael all day and Tom stayed home. I bounced around from staying with Tom, to the Superbowl party and then Michael's house. It was a busy day for all the boys, which made for an early bed time. Monday, Nick went to clinic. I took him and brought Joey (his cousin) and Aunt Amy (my twin sister). Joey was very excited to see clinic and everything that goes on with Nick. He watched his port being accessed, the blood draw and then the medicine being administered. Although, I think they like playing the Wii the best.
Nick started his cycle again: Vincristine & Methotraxate through the port, 10 days of 6MP at night and 5 days on steroids. He was asking for a 'variety' of food this morning and of course it was none of the food I bought yesterday. After school, Nick and I have a 'date' at the grocery store. We hoping for a smoother week and getting through the steroids. Karen

We Came Home Yesterday

2010-02-03T19:45:00.002-05:00

Everyone was able to make it home yesterday. Tom was released and is now on steroids, at least we are familia with this and a different antibiotic to treat his ear infection. Nick and Tom stayed home today and hopefully we can get back on schedule tomorrow. Nick is unsure of going back to school. He has been out for 10 days now and I think his shy side is coming out. He likes his 'comfort' zone, but I remind him that his friends are waiting for him at school. Tom is definitely hyper on steroids and not quite sure what he wants, but he will eat any food you give him. He can say some words but it is hard to tell what he wants. Colby is doing great, but of course not receiving our full attention. I think he keeps everything inside of him and then acts out after it boils up. He was upset tonight because Nick did not like his idea and then it turned into a 'my life stinks' crying fit. I feel so bad. We will just have to try as parents to work with him a little harder. Take care, Karen

Feeling Better Today

2010-02-02T10:47:00.006-05:00

3pm Update:
Nick is fine. He was just waiting for chemo and one more antibiotic and then he is going home with Grammy. Tom (our 18 month old), has just been admitted to the ER. He had an ear infection last week and the past 2 days he was wheezing pretty good. Nancy (our daycare) called this morning to say he was really coughing and struggling. We trust Nancy so much and am so glad she called us. She offered to take Tom to the doctors for us. (I was still w/Nick & Greg is in CT for work). So sweet, since she takes of all those kids. Grammy was able to come and get and bring him to the pediatricians office. After a couple of neb treatments his wheezing did not go away and on top of a fever and ear infection not healing, the doctor recommended taking him to the ER. So, here I am with him now and he is sleeping. My mom (Grammy) is upstairs with Nick. I'll post more once the doctor comes in and we know what the plans are.

Nick is feeling much better today. They kept the oxygen on him all night and he was great. He tried to fight the nose tube but we explained to him that is wants to go to JJ's Bday party this weekend, we had to get better. He woke up once to go to the bathroom and for some reason his oxygen levels started to fluctuate and go down again. We were able to get it under control after a while. He slept great and is now coloring and just finished painting his lizard. His counts are their way up, except the RBC: 8.6. This is borderline transfusion but I think the doctor is going to hold off for now because his body is doing well. We hope to be out of here by this afternoon. He will receive his Methotraxate today (they held it off yesterday). I am not sure if we will send him to school tomorrow, we'll wait and see how he feels in the morning. Karen

Nick was admitted today

2010-02-01T17:34:00.003-05:00

Greg came home from work to take Nick to clinic. He was still throwing up and going to the bathroom a lot. He definitely had a fever. When they got to clinic Nurse Paula immediately accessed his port, drew blood and started an IV drip to keep him hydrated. His temp. was 102.2 and they gave him some Tylenol. Unfortunately he started throwing up again and the Tylenol did not stay down. I was surprised that his counts were actually good:
WBC:2.1
RBC: 10.4
PLTS: 252
APC: 1,500
His heart rate was high 140's and his oxygen was low 80's. They sent him for a chest xray to make sure he did not have pneumonia and everything looked clear. Once his temp went down, his heart rate did go down some, but his oxygen was not changing. The doctor felt it would be safer to keep him at the hospital for the night and just monitor him. They have an oxygen tube hooked up blowing air to him and that is helping raise the levels. He is sleeping now. The nurse also took a nose swab (Nick was not happy about that) to send away and detect what virus he might have. We hope to be home tomorrow and fever free. If not, the next step is to order a CAT scan on his whole body to make sure there is nothing fungal going on. We don't think this will happen. Signing off for now. I will update as things change. Karen

Good weekend, but Nick is sick again

2010-02-01T12:03:00.002-05:00

Nick stopped throwing up by Friday afternoon and was feeling better. He still had not eaten much the whole week. He really wanted to go for a sleepover at Auntie Lisa's house that night with Colby and their friend Brian. This was one of those things that we could not say no to. Of course we trusted Auntie Lisa very much, but it looked like Nick was starting to spike a fever. He was very sad during the week and this is what has kept him smiling all day Friday. He was going whether we said yes/no at the time. We over loaded Lisa with a list of instructions and to take his temp. all the time and of course call us if needed. Everything worked out great for Nick, but we received the call at 6am Sat. morning that Colby was now throwing up. This virus is nasty and we are still not done with it. They both had a great time Friday night and Auntie Lisa said Nick was smiling all night long watching the boys play Wii. Colby was much better by Saturday afternoon and we all stayed in for a family night. (And because it was 2 degrees outside)
On Sunday, the boys had swimming lessons and then off to their play dates. I received a photo of Nick during the day and he was beaming with Michael. When Nick came home, he even ate some Chinese Food. He was in bed early last night but woke up again throwing up. Just when we thought this virus has run its course, Nick is still sick. He is home today and not feeling much better. Greg will be taking him to clinic this afternoon and we'll see how his counts are. I keep taking his temp and he is slowing climbing towards a fever. His body is definitely weak, tired and ready to be over this.

No Break for Nick this Week

2010-01-28T08:55:00.002-05:00

I guess I was overly optimistic yesterday about Nick. When we arrived home from clinic Nick started throwing up. It lasted into the night, but he has stopped now. Now he is dealing with going to the bathroom all the time. He does not have a fever and has not eaten anything for 2 days now. I think his spirits are pretty down right now, it has definitely been a very tough week for him. He was so excited yesterday to know he was going to see Micheal today and he was very upset last night when we told him he had to stay home another day. I really feel bad for him. He is a very social child and loves seeing his friends. It is tough to watch him lay on the couch all day, quiet and looking sad. We are hoping for a better day tomorrow and maybe a trip over to Auntie Lisa's house in the evening. I have a few activities for Nick to do today and hopefully I can sneak away from work for a little while and hang out with him. Keeping our chins up, we will get through this. Karen

Fever is Gone

2010-01-27T12:13:00.002-05:00

Hi All,
We are at clinic now and Nick is much better. No fever today but they are still going to give him the antibiotic and an extra bag of fluids. He is not eating much and I am trying to have him drink juice, but he is not interested. The color is back to his cheeks and the pain has finally gone away. The steroids really hit him hard this time, eventhough there was not an adjustment in the amount he takes. I think his body just gets tired sometimes and then he gets hit with a virus, that definitely gave him aches and pains, on top of the steroids. He is planning on going to school tomorrow and then a play date with Michael after. I think 3 days on the couch is giving him 'cabin fever' and this will help perk his spirits up. Karen

Fever & Back to Clinic

2010-01-26T14:56:00.003-05:00

As I finished up my post from Monday, I realized that Nick was not feeling much better. I kept taking his temp. and it was ranging from100.8-102. Anything above 100.4 is considered a fever for his protocol. He said he was still in pain, his throat hurts, his eye was watering and he felt icky. I caught a cold and did not want to take him to clinic because of exposure to the other kids there. Greg was able to come home from work and take Nick. The nurses had his usual room ready for him, but once they saw him, he was put into a room, with a door. (The usual room is the ones with a curtain and mainly used for transfusion patients. Nick is comfortable there, so they let him have a room). His temp was 101.8 and he seems kinda out of it. We brought the morphine pills with us to make sure we had the right dose and we do, but he should not be so knocked out from it. His counts completely dropped but not to the neutropenic level.
WBC: yesterday 14, today 5.2
APC: yesterday 11,900, today 4,200
They did a strep test on him and we should know the results tomorrow. They are also pumping some fluids into him to make sure he is not dehydrated. He was drinking water all morning but does not have an appetite. I am not sure why the pain has not subsided yet and why this virus hit his system so hard. He was given an antibiotic drip and they want to see him tomorrow. We are going to try and hold off on the morphine and get back to the Tylenol w/codeine to see if that helps. Hoping the fever will break tonight. I will be taking him back to clinic tomorrow for a check up and see how his counts are. Karen

Clinic and Pain

2010-01-25T14:08:00.009-05:00

Hello,

Nick handled the steroids very well after the first day. He calmed down and made it through the week. His definitely had a bigger appetite this time around and I believe we went through 4 bags of Dorita's. He finished the steroids on Saturday morning and by Sunday morning the pain started. We had Michael over for a playdate during the day and the boys were great. Nick took a little nap while Colby & Mike spent time on the Wii. After Mike left, Nick complained more & more about pain. I gave him some Tylenol w/Codeine but by dinner the pain was not going away. We ended up alternating the Tylenol and morphine all night. On Sunday night before he fell asleep he said he had not experienced this much pain in a long time. He asked me why he was in pain. He kept moving around and trying to find a comfortable position. We also tried ice packs, heat packs and lots of back rubs to ease some of the pain. He fell asleep but woke me up in the middle of the night needing more pain meds. Again, it was another 'surprise' to steroid week for us. His pain is usually controllable and ends within a day. So, it now brings us to clinic. When we arrived at clinic today, Nurse Paula could tell right away that he was not felling well. His heart rate was elevated (165, normal 98-100). No fever, it was just from the pain in his back and legs. The nurse decided to give him a shot of morphine through his port. Which leads me to the picture above. The morphine knocked him out and let him relax for a couple of hours. He really needed this because he has been so uncomfortable.
Nana (Greg's mom) came with us today to see how the procedure works and maybe be able to take Nick for us someday. I believe the experience for Nana was more uplifting than what she expected. Many of you may not know this but Greg lost his sister (Ilene) to cancer 28 years ago. A lot has changed since then between the port and medicines, but you never forget your child and battle they go through. We know Ilene is looking down on us and guiding Nick through his treatment. Thanks for coming with us, Nana.
Tuesday, Nick is home again. (I started the blog on Monday and saved it until Tues. to post) I do not want to push him to go to school right now. The important thing is to focus on the pain and get his strength back. He gets pretty weak from this. His counts were high, which is to be expected since he just finished steroids. I am hoping after today, he will start to feel better and we can get back to a regular routine. Take care, Karen

Day 1 of Steroids

2010-01-21T10:42:00.002-05:00

Yesterday was Day 1 of steroids and it has started off very challenging. Nick was upset in the morning because his back pack had to much stuff in it and it was heavy. Greg told him he would help him get it on the bus. We had to pack his lunch, snow pants and shoes (for daycare). I guess Nick ended up getting on the bus pretty upset. I received a call from the nurse at 9:30am because Nick was complaining of a stomach ache. The nurse was able to find out exactly what was happening, Nick did not want to go to gym class. His legs feel tired after gym. I have mentioned to him that he needs to let the teacher know if his legs hurt, so he can rest. The nurse re-assured both of us that she would talk to the gym teacher and check up on Nick next week. It is part of our 504 plan, so we should be okay next time. Nick's teacher also emailed me in the afternoon letting me know that Nick had a rough day. He was on/off crying because of the whole back pack episode. He did better at night and only had 2 melt downs. This morning was much better and he was happy that we tied his snow pants to the outside of the back pack. I had to pack him up 2 bags of Doritos's, I think this will be the food of the week. I only bought one bag on Tuesday and it is already gone.
Tom is sick with the throw up bug. He has been home for two days. Not sure how our weekend will turn out and hoping we all do not get sick.
On a positive note, Colby was asked to move up to the 'big kids' Karate class. He is very excited and will start on Friday night. It will be good to have the kids separated for class, for now. Karen

Clinic Today and Back on Steroids

2010-01-19T21:10:00.006-05:00

Hello All,
We are happy to come off of a great weekend and get ready for the next week. On Sunday night Cousin Rachel stayed with us. She goes to college in CA and it was great to see her for the whole night. (Although, I think we took her away from socializing for a little bit. :) ) Nick and I headed to clinic today. Papa Boston brought the kids a paper air plane kit yesterday and of course I had to bring it with me to clinic. We made 3 planes and tried to make the 4th but it was time to go. The nurses at The Tomorrow Fund are wonderful. Nick is now very used to getting his port accessed and we are proud how far he has come. Many of the nurses have said that kids his age do not adjust as well as Nick has during the access. I am amazed because all these kids go through a lot and I can't blame them for not liking it. Then, on top of it, they are hit up with chemo, blood, platelets and meds. Nick started his cycle today, Vincristine, Methotraxate, steroids for 5 day and 6mp for 14 days. They have increased the Methotraxate dose this week. We had reduced it a couple of months ago when he was sick and had some viruses. He is not up to the 100% dose yet, they decided to take it slow and make sure his body can handle the adjustment. His counts are great:

WBC: 6.3
RBC: 10.3
Plts: 352
APC: 5,100

If you do not remember the normal range, all the numbers above are within normal. This is one of the reasons it was time to increase the Methotraxate. You look to make sure the chemo is doing the job and the counts are not to high. The chemo kills the good and bad cells and you hope it can attack any remaining leukemia cells that might pop up.
We had a great surprise today. A family we met almost a year ago, when Nick was in the hospital for a fever and really down at the time, stopped in clinic to say hello to us. A little boy named Cody was diagnosed with a brain tumor in May 08. He is now cancer free. Cody grabbed Nick's hand and walked him around clinic for awhile. Nick was very excited to be 'the big kid' and hang out with his friend. Cody is almost 2 and had a few set backs during his treatment. The resilient in these kids are amazing and it was great to give the mother a hug and wish them well.
That is all for tonight and I am sure we will have updates during the week. Nick already mentioned that he can not sleep alone. As parents, we all know how the kids would like to sleep with us. Between Tom and Nick, it is like bed hopping and trying to get some sleep. It's okay, because we have our family together and that is most important to Greg & I. Take care and don't forget to give your kids extra hugs. Karen