Biopsy Results and the Last Two Days

They performed a bilateral (on both sides) biopsy on Max yesterday. We got the results today and both showed about 15-20% cellularity, which is basically what they saw two months ago. This means he does have aplastic anemia. They ran two other tests, one for PNH which was negative and one for Fanconia's Anemia. The Fanconia's test takes quite a while to run and it will be a week or two before they get the results. If it comes back negative, they will start treatment for aplastic anemia immediately. As none of us were perfect matching, they are not going to try a bone marrow transplant at this time. Instead, they will be doing immunosuppressive therapy. This will start with a 1-3 week hospitalization where Max will be given ATG and a steriod. Then, he will take cyclosporine for 6 months. Hopefully, this will destroy any cells that may be destroying his bone marrow, and get the bone marrow working again. During this period, we will have to do our best to keep him from developing life threatening infections or bleeding.

We have had a long couple of days. Yesterday was really awful. Traffic into Boston was horrible and it took us close to 2 1/2 hours to get to MGH. Because we were so late, they moved Max's appointment back from 10:30 to 12:30. Max fought the anethesia so she had to give him a large dose, which took him forever to shake off. We left around 5 with Max conscious, but still pretty woozy. In fact, he threw up as we were walking out the door. He slept the whole drive home. When we arrived home, he was hungry, so we put him in his booster chair and went to get him food. He fell asleep and hit his head on the kitchen table. As his platelet count was only 12,000, he is at a high risk for a brain bleed, so we had to go back to the hospital, where they did a CT and gave him a platelet transfusion. The ER was crazy, and it was after 5AM before Max got admitted to the pediactric ward. Josh stayed with him. I went home around 4AM. Our friend Rosa has been visiting and stayed with Lauren. She has been a Godsend these couple of days.

Because the ER was so busy, two residents put in Max's IV. The nurses there do a fabulous job with IVs, but, probably because they don't do many, the resident had trouble. He missed the first try (he was on Max's right arm because his left had been stuck twice earlier that day), then managed to get it in the second try, but was not comfortable with the way it was flushing. However, after much fiddling, flushing, drawing, etc, they decided it seemed to be working okay, and started the platelets. I wanted to stay around until they finished the transfusion, but by then it was almost 4, and I really needed to go home. Max and Josh fell asleep.

When the checked the IV this morning, they discovered much of the platelets had not gone into the vein, so Max's arm was quite swollen and sore. Much of the swelling has gone down, but he is still pretty uncomfortable. His body did absorb a lot of them, though, and should absorb the rest eventually. His platelet count is up to 51,000. They gave him a shot of vitamin K and sent us home around 3. He did so well these last two days. He is really amazing. He had 4 IV's put in (the put a new one in when they discovered the problems this morning), plus the miss, and one shot, as well as the CT, which definitely scared him. He is stiff and sore. But, he has remained pretty upbeat. Hopefully a good night's sleep will help a ton. We could all use that.

On a good note, his Absolute Neutrophil Count is over 500 (barely) so we can actually do some more normal activities for the next few days. I hope to do some things while we can. Our next blood test is Wednesday.