Sunday - September 30, 2007
Sunday, September 30, 2007
Day +82. The refrain of Jessie’s days: ”When can I get out of here? What’s keeping me here? What do I have to do? Can we ask?”
TWO PARTS: As ever, you have to look at the past several months from two perspectives. Jessie relapsed for the second time at the beginning of April. She underwent two aggressive induction rounds of chemotherapy as an inpatient on 6West. And came out bald, but strong...earning an orange belt and a purple belt along the way. She was robust, energetic, cranky and feisty. Transplant itself went well. Infections were her downfall.
At the beginning of the summer, she returned for the hardest part of all. She was as strong as she has ever been, as the longest and most dangerous part of the team’s response to relapse began: cord blood transplant. They assessed her wellbeing, as she entered this protocol, at 100% fitness. Then they literally killed her own marrow with near-lethal doses of chemo and full-body radiation. She will manage the side effects of those 10 days of conditioning for the remainder of her life, with hormone-replacement therapy and the monitoring of an endocronologist, to say the least...but the key words are...for the rest of her LIFE. In early July, the stem cells harvested from the umbilical cord donated from a healthy baby, were transfused into her emptied bones; the intention was to a grow a new marrow, one that wouldn’t have the deep-hidden templates for leukemic cells in its mix, and one that would find and eradicate any lurking leukemic cells, if it encountered them.
On the transplant front, as measured in the “positive numbered” days from day zero, when the cells were first transfused into her body, she has done very well. The transplant process has been kind to her body. She has tolerated the new cells, and they have found a working peace with her body. The new marrow has engrafted, as measured by an ANC of 500 for more than 3 days. In fact, the side effects that often come with the conditioning and the transplant were minimal. Yes, she certainly shows some classic side effects of the transplant and its medications, such as dependence on platelet and red blood transfusions, inability to metabolize key electrolytes, and persistently high blood pressures, and fluid collecting outside vital organs, but all of these side effects are manageable. And mild, truly, by comparison to what might have happened in the earliest days of transplant.
Infectious complications are usually Jessie’s vulnerability. She came into transplant, colonized with 3 infections: vanco-resistant entercoccus (bacterial infection), zoster (virus dormant in nerves until immuno-suppression set in), and BK virus. Two of these came to life within a few days: zoster and BK virus. Both were dangerous, and BK virus created some of the toughest pain and worst living conditions of the transplant experience. Then she developed two fungal infections: candida and aspergillis. Again, both were dangerous, and though she “held the line” and remained stable, they couldn’t be effectively treated until she was well past the initial few weeks of transplant, and could undergo the lung biopsy to remove the aspergilloma in her lung.
NEW INFECTIONS: She continues to be treated for the two fungal infections with Ambisome and Vorcionazol. And, okay, we now have more possible low-level infections going on. Two are confirmed.
Yesterday, we removed a contaminated PICC line...sound familiar? Jessie has had at least 20 cardiac catheters...4 port-a-caths, and 4 sets of double-lumen CVLs and several sets of peripheral cardiac catheters (PICCs). And a tunneled jugular catheter. Only a few of those cardiac catheters were ever removed by plan, at the end of treatment, as opposed to loss through infections. The most recent PICC line was contaminated by a gram positive staph non-oreous organism.
Also, today we learn that a recent urine culture grew out a positive bacteria: stenotrophomonas maltophilia. Ugh. Can anyone say that? They’re changing her antibiotic coverage to include a drug to which this bacteria is particularly sensitive, so now she’s receiving Cyprofloxasin, in addition to Zosyn and Vancomycin.
Then, of course, they’re watching the fluid pockets around her heart, lungs and in her abdomen. And the inflammation around her colon and lower bowel. Any or all of these might be contributors to her persistent low-grade fevers. They would be considered localized, since they haven’t been found in any blood cultures, and could only be tested through “tapping” the fluid by extracting some with a needle (which isn’t currently under consideration). A scan, next week, will determine whether these areas of concern are resolving satisfactorily.
SO WHAT DO WE HAVE TO DO TO BE DISCHARGED? KICK THE FEVERS and INFECTIONS! So please, let’s ask our Creator for some compassion, and a reprieve from infections. If we can end the fevers, and successfully finish a course of antibiotics, and have an improved CT scan next week, maybe we’ll be closer to discharge stability. How about it? How’s that for a plan? So let’s all ASK for it, for Jessie’s sake. Stability, resolution of infections, continued equilibrium of her new marrow in her healing body, freedom from cancer, progress in the healing of her fungal infections and other internal vulnerabilities...and a chance to leave 6West!
IPSWICH: Of course, life continues in Ipswich, too. Church...with the news of the community, both good and bad. We learn that JT Turner, the actor and director of moonlight productions, sings the National Anthem at the Red Sox game today! On the sobering side, baby Wilcox is in NICU, one floor away from Jessie, due to premature birth. Please hold this newborn and family in your prayers today and in the weeks ahead.
Daddy and Sarah run errands. Do projects around the house. Prepare for the week ahead. And yes, they have fun, too...And step by step, both in Ipswich and Boston, we do the work that is needed, in order to be home together again.