On April 22, our doctors came to us more bad news (a recurring theme in this whole fiasco).
If the doctors aren’t sure that you have Aplastic Anemia, but are pretty sure the CBC blood counts you have are from this disease, they might continue to test your bone marrow until the disease “declares itself”. Bone marrow declares itself when the cellularity of the marrow is less than 10%.
From the continuing declining numbers in Clark’s blood counts, we would need to do another bone marrow biopsy, as well as platelet and blood transfusions to ensure Clark’s survival. They were still certain that Leukemia had been ruled out, but wanted to check to see if Aplastic Anemia was going to declare itself.
Up to this point, even an attempt to pull blood had been extremely difficult. Our last time we tried to put an IV in Clark, we had a horrible 20 hour stay in ER and still didn’t get it in.
So we had to make a decision. The stress of attempting to find veins in Clark was physically and psychologically damaging. And if he needed an IV for a bone marrow biopsy, plus transfusions twice a week, plus pulling blood samples twice a week, plus (possibly) chemo therapy… We needed a better solution.
So we asked our doctors to implant a Broviac. You can read more about the device here. By placing this “central line” inside Clark, doctors could easily give or take liquids, without the use of needles.
So in 1 days notice, we packed everyone up, and went for an extended stay in Kaiser’s Oakland pediatric facility. We arrived late in the evening to “check-in” and give us “in patient” status. This allowed us to start Clark’s surgery 1st thing in the morning.
Clarkie’s room had a crib, fold out couch, a private bathroom and a ton of medical equipment. This was a very cozy (as in, tiny) room for 4 of us to spend the week. We were able to ask for a hospital bed instead of a crib. This allowed Patrick and Clark to shared the bed, while Connor and I slept on the couch.
The morning of the 25th, Clark went in for surgery. Factor VIII was given before and after the surgery. They performed the marrow biopsy, and then the broviac insertion, followed by platelet transfusion and more factor. The surgery went well with no bleeding issues and the broviac was able to be used immediately.
The hospital stay lasted 6 days (4 people, small room). Clark received factor treatment 9 more times during the visit. Not because of any bleeding, but evenly spread out as a precautionary treatment. During our stay, we received training on how to care for his broviac and to wait for his test results to come back.
Sure enough, this time Clark was diagnosed with Severe Aplastic Anemia. He has a 5% cell growth. 10% is considered Aplastic Anemia. Clark is now being tested for multiple genetic links to Aplastic Amemia (approximately a 10% chance), as that may change the course of treatment. Patrick, Connor and myself were tested to see if we are a bone marrow match. The results will be available in a couple weeks. Connor stands the best chance of being a possible donor.