Nicholas finished treatment on 11/18/2010. He will continue to go for blood work for the next 3 years. He is still in remission.

Friday, March 12, 2010

Day #4 - Scheduled to go home

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.

Thursday, March 11, 2010

Day #3 In-Patient

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

Wednesday, March 10, 2010

Day #2

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

Tuesday, March 9, 2010

Nick surprises us with Pneumonia

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