Feeling Better Today

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

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

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

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

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