Spring is Finally Here

Seeing as I wrote complaining about all the rain, I thought I would write again and say that Spring has finally arrived. After all that cold weather, it suddenly got warm and sunny. Really warm. We have been taking full advantage of it. Max helped Daddy and Grampa Richard clean the yard, he and Lauren helped me with the garden, we played with the hose, and went to the playground yesterday. It feels so good to be able to get out of the house.

Late CBC numbers

Sorry. I totally forgot to post Thursday's results. They were okay. His platelets were up a bit, everything else was down a bit, I think (I need to go back and look). The doctor said keep him on the drugs until the end of the month and see how he is doing. If things look okay, they will take him off the cyclosporene. We are very hopeful.

WBC: 3.6
HCT: 27
HGB: 9.5
PLT: 86
ANC: 1584

It feels like it has been raining for a month, but I guess it has only been for a couple of weeks. I am pretty bored with it, though, but Max has been taking it in stride. He doesn't seem bothered by the weather and is perfectly happy playing soccer outside even if it is 35 and raining with high winds. I wish I were as hardy. We have been trying to keep busy inside, too. Today, we made lemonade and played with homemade playdough. I made several colors yesterday, though today it is all one large, redish-orange mass. It still makes a great road for the construction crew to work on, though. Last week, Miss Ellen came by with spin art, which Max loved. He made several masterpieces, which will find their ways to different grandparents refridgerators soon.

Max seems to be doing very well. We are keeping our fingers crossed that tomorrow's test results will be good.

Today's Visit

We headed to MGH today for another dose of antibiotics and a CBC. Josh came for his first full visit (well, he left before we did as he didn't realize it tends to be a three hour stay) and we got to talk to the doctor for quite a while. Max's counts were better than they were when he was hospitalized almost two weeks ago, with the exception of the platelets. His platelets were down to 81. Dr. Ebb spent a lot of time telling us that there was much more good news than bad, though. He was pretty sure I was going to be upset over the platelet count. Actually, so was the nurse, who apparently told him he got to be the one to tell us the results. Anyway, the good news:
1. His HCT and HGB, which had dropped significantly between the Thursday regular CBC a couple of weeks ago and the test at the hospital two days later were both up. They are not as high as they have been, but his body made enough red cells to improve those numbers.

2. His white count and ANC, both of which spiked when he was sick, were back aroud where they had been before he got sick. His immune system seems to be working the way it should be working.

3. The doctor spent a lot of time explaining this to me, but I still do not really understand it, so please forgive the fuzziness. Under PLT comments on the hematology report was the comment Large Forms. Apparently, this is an indication that his body is working hard to produce more platelets. It is kind of like looking at the number of baby red cells or white cells, but I guess platelets are different. Anyway, the doctor thinks that chances are good that Max's platelet count actually dropped lower than 81 and is recovering.

They checked his reticulocyte count (baby red cells) in hopes of seeing a nice high number showing that his body was pumping out lots of new red cells, but it was actually 1.4 percent which is "normal." If it had been <>2 percent. However, as long as his red count stays steady he will be okay, even if it is a low number. And we have seen that his body is capable of producing more as it did over the last two weeks.

So where does this leave us? He offered to do another CBC in a week for my sake, but I couldn't see sticking him if we didnt' need to, just because I am worrying. His counts should be safe enough even if he is still dropping, so there is no need to test any earlier than two weeks from now. As of April 16th, he will have been taking cyclosporene for 6 months, and unless his platelets continue to drop, he will stop taking it after that. He will still need the antibiotic for another 6 months, so we will go back to the hospital in a month for another dose of pentamadine. He will probably continue to get blood tests every couple of weeks for a few more months, depending on how things go. I am sure there will be a bone marrow test, but we didn't talk about when. As long as he seems okay, they are going to remove the port sooner rather than later (originally, they planned to keep it in until Oct, but it has been bothering him, so they would like to take it out as soon as they can. He is growing like a weed, so hopefully he is just outgrowing it, but no sense in taking chances). After the port comes out, he will get the monthly antibiotic orally. He will still be considered immunosupressed until October. After that, hopefully life can return to a somewhat normal state.

So, I guess we just keep waiting and trying not to worry. He seems good, and the nightmares have gone away. He isnt' even grinding his teeth as much as he was last week, so hopefully the stress he was exibiting was just due to the illness and that hospital stay. He is definitely getting tired of this, though. I haven't figured out how to tell him there is still a very long road ahead.

CBC 04/06/2007
WBC: 4.2
HCT: 27.9
HGB: 10.3
PLT: 81
ANC: 1640

Feeling Good Again

Max is finally feeling good again. He wasn't himself for several days after the fever broke, waking up many times during the night. We are not sure if he was having nightmares, but he was waking very upset, and also crying out in his sleep. We were pretty worried that maybe the trip to the hospital had taken its toll. However, He finally slept well again on Friday, and seems back to himself today.

We head to MGH on Friday for his last appointment before the end of the six month treatment.