Coming Home

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

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

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

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

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

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

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