January 9, 2011

Today the Raven's beat up on the Chief's which was exciting to watch! Even more exciting than that was that Grayson took his first walk in his walker since before Transplant Day! I unfortunately did not catch it on video (groans from the crowd).

On the 7th we started noticing his white cell count returning. These are the first stem cells to engraft and they were showing the doctors that they were starting to grow and multiply. He also got something called an engraftment rash where he looked flushed all over and had bright redness on his palms and soles. They were all (1 Attending, 2 Fellows, 2 Residents) standing in a circle around Grayson and each took turns examining and pointing and oohing and aahing over that rash. I have to say that Tom and I have never been more excited about a rash in our lives! That day he seemed to stay awake longer and after the doctors left he actually sat up for a while and played with his toys on his play mat. Tom and I were in our glory as we played peek-a-boo, stacked blocks, read books, and tickled our baby. He actually giggled aloud. It wasn't quite his old belly laugh but it was enough to make me well up with tears of joy. It really was so cool.

The next day, the 8th, the rash has subsided which the doctors expected because the engraftment rash only lasts for about a day or sometimes a few hours when the cells are first engrafting. Anyway, his counts were up even higher. His ANC (Absolute Neutrophil Count) went from 264 on the 7th to 857 on the 8th! These are the wonderful white cells that help fight bacterial infections and also help heal the mucositis. His white cells are coming in super fast which is very exciting. We also saw a decrease in his weight, his girth and his liver enzymes which were all positive things because it means his liver is healing itself. I just can't tell you how awesome it is to see God work to heal our son right before our eyes. Three days ago our baby seemed lifeless and now it seems like he has done a 180 and is headed for discharge. It is amazing how one tiny cell can take our baby from being lifeless to sitting up and laughing. We are most definitely "fearfully and wonderfully made"!

Grayson now has his days and nights confused which is normal when you are living in a hospital, but still strange for a baby. He woke up on the 8th around 10:00pm and was ready to play. At 12:00am on the early morning of the 9th he seemed alert enough to stand up and walk around a bit. We decided to let him try the walker. At first when he got in it he just sat there and we were unsure if he remembered what to do in it. Although he was cruising at 10 months and getting ready to walk, we expect him to have some developmental delays due to the chemo. In addition he hasn't used his leg muscles in about 3 weeks so there is some atrophy. Although "atrophy" wouldn't immediately come to mind when you look at those chubby thighs! None the less, he did struggled at first but he eventually started moving and headed for the hallway just like he used to. Tom pushed the IV pole so he wouldn't have to pull that extra weight and I coaxed him along. He got about halfway down the hall and started fussing. I thought maybe he was in pain but the nurse assured me it was good for him to use his muscles again so we let him continue. He was quite clumsy in his steps and ran into a few walls. The walkers should really have a warning labels for babies under the influence of narcotics :)  He got tired after half a lap and his hands and little legs started shaking. So I scooped him up and we smothered him with proud kisses and took him back to bed. A very proud moment indeed!

When we got his lab results back on the 9th it also showed a continued trend in his liver enzymes and bilirubin which showed continued liver recovery as did his stable weight and girth. We are giving thanks for his liver recovering because we were all very nervous for a while. I don't know why we were nervous because God had things under control the whole time and he faithfully came to our aid and healed Grayson's liver.

We are preparing for discharge now and there are several requirements we have to meet before we can go to our other housing facility. We have to stay within 15 minutes of the hospital so the baby and I are moving to an apt. designed for post BMT patients in Canton for at least 2 moths after discharge. We will have outpatient visits here at Hopkins three times a week for several months but will lessen to 2x and then 1x as we get further out from transplant day. He will also have to come back for the bone marrow test procedures which are under anesthesia at the 30 day mark and 60 mark. Those tests will show whether the white cells that are coming back are Gavin's or Grayson's and whether they are normal, healthy looking cells. He will have these tests done at specified intervals over the next two years. After the two year mark, his chance of relapse go down significantly. I am probably getting ahead of myself because first he has to be healthy enough to leave the hospital. So, to leave the hospital he must maintain a ANC of 2000 or greater without the aid of the GCSF (miracle white cell booster drug), he must be able to take and keep down oral medicine of which he will have many, he must completely of the narcotic pump, and he must be taking some food or drink by mouth. Oh and no fevers, rashes or infections of course. This will still take some time but he has really turned a corner here and we just know God is orchestrating his rapid recovery.