Quick Update: Thursday, January 23, 2003
The spinal tap came back clear which was expected. The bone marrow aspirate came back initially as 5-10% blasts, but it was unclear if they were leukemia cells or normal blasts (immature white cells). A flow cytometry test was performed on the bone marrow aspirate and we got the results today. There are only 2-3% blasts in her bone marrow and they are not leukemia cells!
Needless to say we were very surprised to hear this. It appears that the pathologist at the lab in Tacoma screwed up. Either that or the peripheral blasts and bone marrow blasts disappeared in the two days between tests, which is highly unlikely. No harm done, except for a few more gray hairs and two days of stomach churning stress!
Even though it appears that a relapse hasn't happened yet, we went ahead with the dose of Mylotarg. We had already planned to give her that dose early next week, so there was really no harm in giving it a few days early. Plus there is a good chance that a relapse was imminent as her platelets have dropped from 140 to 47 over the past week. The Mylotarg should hopefully give us a little more time to prepare for her second transplant.
It's starting to look like
we may be able to stay here in Seattle for the second transplant.
Surprisingly the doctors at Fred Hutch and Dr. K at Duke have agreed
upon a protocol for the second Cord Blood Transplant. There are still a
few small details to work out, but we're cautiously optimistic. If it
does work out, it will be a tremendous relief to Andrea and I, as we
were not looking forward to being on separate coasts. We'll still be
separated to a certain extent, as Alex will need to remain in close
proximity to Children's Seattle for at least a couple months after she's
released from the hospital. We'll need to find a place to stay near the
hospital, as well as rent a second car, but at least we'll be in the
P.S. Nick is up to 3 pounds, 8 ounces!
Monday, January 20, 2003
One week. That's all the time we had to relax before the latest crisis hit. Alex had her blood test today and it showed 6% Leukemia blasts. She is relapsing again, only 3 1/2 weeks after her last Mylotarg dose. As you can imagine this changes everything.
Alex will have another dose of Mylotarg in the next couple of days to hopefully get her back in remission. After that it will be time to get her to the hospital where her Cord Blood Transplant will be performed. Of course we're still not entirely sure what hospital that will be. Childrens San Diego has been ruled out since they don't have enough experience with Cord Blood Transplants. We're going to take one last crack at Fred Hutch to see if they'll do a Cord Blood Transplant, but it's a long shot. If that doesn't work out Andrea and Alex will be heading back to Duke as soon as we can get a flight through Corporate Angel Network. I'll have to stay behind with Nicholas, as he is still at least a month away from being released from the hospital. Even after he's released it will be at least a week or two before we'll be able to fly back east to be with Andrea and Alex. This means that Andrea and Alex will be going through the hardest part of the transplant without me.
As you can imagine this has not been an easy decision for us, but it's the only option if we hope to save Alex's life. We are going to need everyone's help to pull this off. First we're going to need a private flight from Seattle to Durham, North Carolina for Andrea & Alex. Alex is still neutropenic, so there is no way she can fly on a commercial flight. We'll be contacting Corporate Angel Network tomorrow to have them start looking for a flight, but we need a backup plan if there aren't any available.
Secondly we're going to need airline miles for commercial airline tickets for myself and Andrea, in case it becomes necessary for either of us to fly cross country.
Lastly we're going to need help paying for lodging, meals, car rental, etc... for the 4-6 months we will need to remain in Durham. Alex will probably be outpatient for the first couple of weeks in Durham, but once she's admitted for the transplant, she'll remain there for at 4-6 weeks. During this time we will not be eligible for any aid from the NCCS (other than some meal money), since they only offer financial aid when you're outpatient. We're looking at expenses totaling around $2500/month for at least two months. After that Alex will hopefully be outpatient and eligible to receive some housing aid from NCCS, but we're not sure how much that aid will be this time.
We also need to make arrangements for Nicholas and I to fly from Seattle to Durham, but that's at least 6-8 weeks away. More than likely that will also need to be a private flight, as Nicholas will be extremely susceptible to infection for at least the first year of his life.
Well now that we've got the bad news out of the way, how about some good news. A couple of days after being removed from the respirator, Nicholas's CPAP mask was replaced by a nasal cannula, which is the final step before being removed from all external oxygen. Then yesterday he was moved from the NICU to the Intermediate Care Nursery, which means we can now hold him every day! It looks like I'm going to be doing a lot of kangaroo care over the next month or so. This photo of Nick is eerily similar to the December 1998 photo of Alex below. We call it the "What Me Worry" pose!
The next step for Nick is to be
switched from continuous feedings to bolus feedings, and then finally to
bottle feedings. He'll be released from the hospital once he is able to
exclusively bottle feed, consistently gain weight, maintain his own body
temperature and be completely off of external oxygen. The best case scenario
would have him being released in 4-5 weeks.
-- Todd, Andrea, Alex & Nicholas Martini
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