Fever is Gone

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

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

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

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