Staying Hopeful

We took Addison to the Tampa Hematology Clinic yesterday because they needed to flush her port again and draw the final blood test. She did so much better with the port access this time which was a relief to both mommy and daddy! We were successful at distracting her with lots of bubble blowing, singing and reading books. Her CBC came back and it was not great. Her platelets have dropped again this time to 25 (lowest they have been since before July 19th).

WBC 3.3
Neutraphil 700 (lowest they have been in a few weeks)
HGB 10.3 (11.4 last week)
platelets 25 (37 last week and 47 week before but 28 week before that)

Because Addison's counts dropped again the Dr recommended doing another bone marrow biopsy. We knew this would have to be done again but was not anticipating it would happen this soon. We need to know exactly what her body is doing and your peripheral blood (CBC) only gives you a snapshot. We need the full picture. So this means our poor baby has to be put under AGAIN and is getting a double biopsy this time. They will draw a sample from each hip bone. The reason they are doing this is because they have seen significantly different numbers from each side in other cases. So Addison will now have two scars on her beautiful back instead of one. :( This is taking place tomorrow morning. Not a lot of time to mentally prepare but we need answers and the sooner we get them the sooner we know what to expect moving forward.

When Addison had her first biopsy in June her bone marrow cellularity (% that bone marrow is functioning) was around 10-15%. Normal for Addison's age is about 80%+. When she had her second biopsy July 20th it was not a clear sample and they guesstimated her cellularity to be between 20-40% which showed great improvement only 6 weeks after her 1st biopsy (they were expecting to see it at 5% NOT increased!). Almost 8 weeks have passed since last biopsy and the doctors would have liked to have seen Addison's numbers a little more stable or higher. Your bone marrow can be functioning at a decent % before the higher numbers show up in your peripheral blood (CBC) and that is what we need to determine. If her cellularity has dropped we will be starting treatment, if it looks like her body has hit a plateau then we will seek treatment to give her a boost, if her body is improving we continue to watch and wait. We will not have results back until Friday afternoon at the earliest. The sample has to calcify for 24hrs before being reviewed by the pathologist. We will keep you posted and please continue to pray for our darling. Thank you.