Day 1 of Steroids

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

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

A picture of Thomas

Hello,
I am blogging tonight about a picture that was posted in the last photo album I uploaded. The people who did see the album will understand the picture of Thomas. I apologize for this picture and really believed it was deleted before the album was uploaded to this blogsite. You have to go through the Picasso web album site to create an album, save it, reboot your computer, log into our blogsite and then upload it. I am still not sure how this picture showed up because I went back into my Picasso album and did not see it. It is a public site, so a little scary to know about this.

Of course I woud like to end this blog on a positive note. We all had a great weekend. Nick had a sleepover at Michael's house Friday night, thank you Debbie & Mike (Michael's dad). Mike also took Nick for a hair cut. He looks great. Hair is very thin and pretty much gone in the back. He wanted a mo-hock, but he almost has one. We all went to Auntie Lisa's and Uncle Hectors house for an ice-skating party on Saturday. It was warm out during the day, but Greg & Colby skated at night. We enjoyed our time with family and friends. No big news to report. We head to clinic on Tuesday afternoon and then we start the cycle. The boys are off tomorrow and Papa Boston is coming for a full day of fun. Take care, Karen

Hello Everyone,
I have to back up a few days to Monday, January 11th. This is the day, 7 years ago, that I married Greg. I am so lucky to have him and how much he supports me during those 'down' times. We have grown stronger in our marriage and family through this journey. I love you Greg.

WBC: 5.7
RBC: 9.8
Plts: 217
APC: 4000

Nick was very excited to go to clinic with Grammy this week. They went on Tuesday and everything was great. We are working on getting back to a Monday schedule. (He was off schedule because his last spinal was on the Thursday and then he started his cycle that day to.) We will go next week on Tuesday and then back to the Monday schedule. Nothing really exciting to report this week. The boys will start swimming lessons this weekend. Nick is looking forward to it. He remembers how the pool helped him with his back and leg pain last time. He still has some pain during those steroid weeks, so this should help him. Between sleepovers, playdates, school, karate and swimming we have been busy. We'll take these good weeks and enjoy them. Karen

Glad steroids are over

I feel like a broken record at times with his steroids but they really do a number on him, mentally and physically. He ate a lot this time around. I think he had 2 cans of soup at dinner the past 2 nights and was still hungry. He has complained of some back pain and definitely had stomach aches this week. He had a very rough day at school on Tuesday and the nurse called to say he was crying because he was in pain. Greg ended up picking him up early and his mood changed as soon as he got home. I think he just really feels more comfortable at home during steroid week and does not want to be at school or daycare. It's tough to have patience during the steroid week. You try everything to calm him down when he starts to get upset and sometimes it just does not work.
Yesterday was clinic day and Greg brought Colby with him. Colby has not been to clinic in a while because of the 'mask' policy, but they have now lifted it. Everything went fine and Nick's counts are VERY high. This is very typical coming off of a steroid week, his counts usually go up. We expect them to go back down next week, after he finishes his 2wks of 6MP. After clinic, the boys headed over to Dave&Busters for some play time. They all had fun and Nick was in bed early last night.

WBC: 10.4
RBC: 11.3
APC: 7,100

I posted some new pictures. They are from Oct-Dec. of 2009. You will our friends, family and the kids in them. I know they are hard to see because the box is so small and I do not know of way to make it bigger. I'll have to try and work on it. Take Care, Karen

Happy New Year & Spinal Tap is clear

The good news was just confirmed and Nick had 0 blasts in his spine. His spinal tap last Thursday was much different from the past ones he has had. The procedure is the same but this time we were able to be with Nick the whole time. The clinic usually uses the 'procedure' room in the OR at the hospital. The room is very small and overwhelming with machines, people and everything constantly beeping. Nick gets really scared going into the room and I hold him while he falls asleep and then I have to leave. This time around his spinal was actually done in the PICU recovery room. I held him while he fell asleep and then Greg & I stood back while the doctor performed the spinal. It was very interesting to see and watching the spinal fluid drip and seeing how clear it was, made us feel better. The doctor talked us the whole way through and Nick actually woke up happy and hungry.
We did lots of day trips this Holiday break, up until Thursday. We also had many firsts this week:
1. First sleep over with Michael at our house
2. First time the boys have ice skated
Colby did a great job and really enjoyed it. Nick was afraid of falling but still tried. Each of boys used 2 milk crates tied together for balance. Nick enjoyed sitting on his crates and getting rides around the rink. Thanks to Amy and Jen for helping us out
3. First time Colby & Tom stayed up until midnight and watched the ball drop
Nick was disappointed he did not make it this year but we told him next year he can try again

Today is back to school for the kids and back to work for Greg & I. We will be getting back into the routine and Nick will end his steroids tomorrow. He has been emotional and we pick the battles with him that we feel necessary. He has been craving apples and broccoli this time. Go figure, I keep running out of broccoli. His hair is still falling out and we did talk to the doctors about it last week and it is just part of the treatment. We met another family there who is going through our same treatment and they mentioned the same thing with their daughter. Her hair was growing back and then all of sudden it just started to fall out again.
Hopefully I can post some new pictures this week and share with you our Holiday break.
Take care, Karen

Hello,
We hope everyone had a wonderful Christmas. We had our count of 29 family members and then an extra 7 for dessert. Tim & Anne from Maine (Greg's brother) were able to come down for the day and spend time with us. We have not seen them in a couple of years and it was good to catch up and have the cousins play. Ann from Ohio (Greg's oldest sister) drove from Ohio to come spend time with us and Therese and Charlie. The Shannon side of the family were able to have all 5 children together (and Ilene in spirit) for the day. As crazy as t was, we really enjoyed all the entertainment.
We are still planned for Nick's LP (spinal) on Thursday. We have seen over the past week that he is losing his hair again. He complained about his head being itchy a month ago and I was using Baby Oil on it to help it. I am not sure why, but it is a side effect of the treatments. This phase of his has NOT changed and I am thinking it is just the combination of chemo and maybe the baby hair falling out and the new hair growing in. I do not think it is the later effect, more the chemo. He is okay with it, but of course I worry when he goes back to school next week. Colby has noticed it and mentioned to Nick that he is going bald. I think it is hard for Colby to remember when he was bald. Nick, as usual, just laughs at it and says he is taking his medicine.
We take everything in stride and hopefully will see new growth soon. Take care, Karen

We love to hear all your engourgement and prayers. Nick has been asking about his site lately and who is ther. thank you all.