It's been about 2 weeks since the last update. At the time of this post, Molly has not been outside of the hospital for 9 weeks. A lot has been going on though!
Here's a rundown of what her routine looks like:
Daily weight and girth measured, sheets changed, sponge bath, room disinfected, and vitals taken every 4 hours. Every few days we wash her blankets from home, change the ostomy bag and wafer, and change the PICC line dressing. Since Molly has been here so long, we've worked out with the nurses to get her wrist band changed every two weeks as well.
In the last two weeks Molly has had periods of feeling nauseated, but since she's not back to eating food again it's been mostly dry heaves or if she gets anything out its mucous. She's also had feelings like she needs to pee, but she shouldn't be feeling too much of that with the catheter she still has, so the doctors have been trying to figure out what is going on there. They originally thought the first catheter wasn't in good condition anymore, so they replaced that and found there was a build-up of sediment on the end. That didn't stop the fullness feelings, so they then thought it was bladder spasms, so they started her on a medicine for that and it seems to be working a little. She still has feelings of needing to pee, but it doesn't hurt as much and we're able to alleviate the feeling if we make sure the tube from the top of the catheter to the end container is drained. They have been testing frequently for a urinary tract infection or bladder infection and all tests have come back clean.
Monday, April 20, Molly went to the OR to have the plastic surgeon assess her wound condition, and this time it took only 30 minutes, the fastest she's ever been in the OR. The surgeon took both of the drains out and said the wound is looking extremely good. He's very happy with her progress.
On April 23, Molly was having abdominal pains again, which she said were higher than where her bladder is, so they did an ultrasound, which looked fine. The next day the ICS doctor expressed concern that Molly wasn't having much output from her colostomy, so they did an x-ray, which also looked fine. They did a sort-of enema into her colostomy and that seemed to clear out a small clog, and her colostomy is now working well.
On Saturday, April 25, Daddy got a little break and went golfing with some of the extended family and friends. It ended up raining, but Daddy and Uncle DJ stuck it out and had a lot of fun anyway. Molly had fun with Grandma and Grandpa while Daddy was golfing.
Molly was on morphine up until April 27, and then they weaned her off morphine and started her on Oxycontin every 3 hours. We've been working on getting her weaned off that now, and yesterday they moved the Oxy to every 6 hours and she's doing fine on this frequency.
A few days ago the ICS doctor told us that the surgery team feels Molly has had enough time to heal from the ileostomy to colostomy surgery and we had an NG tube (feeding tube) placed in through her nose down to her stomach, and have started her on a slow-feed of an organic soy-based formula. She's had nearly nothing going through her digestive system for so long that we need to go very slowly with starting her on food again. We're weaning her off the IV nutrition (TPN) as we are increasing the NG formula. Molly has had a few bouts of nausea, so we've kind of been on a roller coaster with the amounts of NG formula she's been getting.
Last Tuesday one of the plastic surgeons came by and removed half of the stitches (every other one), changed the catheter, and let us know Molly can now be off bed-rest and work on standing again. He said she cannot sit yet though, so we tried lifting her to a stand from lying down and she was able to stand for only about 10 seconds before it hurt too much. Her feet have been unused for just over a month, so it's going to take a little work to get her back to walking on her own.
Over the last week we've been researching protocols that other relapse patients have used instead of bone marrow transplant (BMT) and talked to the oncologist about the choices we have for Molly. We didn't feel that a BMT even in the next few months would be the best for Molly considering the complications she's been through recently, and the oncologist agreed with us, especially since we don't have a 100% BMT match for Molly yet. We've all decided it would be a good idea to try a treatment that is in the middle of being researched called CAR T-Cell therapy. What they do is let the leukemia come back to a certain percentage of blasts, harvest t-cells from her blood, take them to the lab and educate them to attack cells that carry the leukemia protein (takes about a month), and then infuse them back into her bloodstream and let them take over the fight. In the time between when they harvest the cells and infuse them back in they will give her a couple of chemo drugs (Cytarabine and Etoposide) at low dosage to hold the leukemia at bay until the t-cells are ready. It is risky in that we have to let the leukemia come back again, and we don't know for sure the efficacy of the therapy, but risks must be taken for progress to be made. In the meantime the oncologist agrees that it would be a good idea to give her the herbal supplements and homeopathic remedies that we were giving her before we started the BMT chemotherapy. The CAR T-Cell therapy will cause fevers and other complications that arise when great amounts of leukemia cells are being killed, so she may have to be inpatient at the hospital for awhile when she receives the educated t-cells. If the treatment is not successful, then there is another chemotherapy protocol we can try (high-dose methotrexate, 2 years long), or we can go the BMT route again. We'll cross that bridge when we get there.
Yesterday the oncologist looked Molly over and declared that once the plastic surgeons are happy with her condition, they don't see any reason to keep her at the hospital anymore! She'll be getting the rest of her stitches out tomorrow morning, and then in a few days we expect that she'll be allowed to sit up, and the catheter can be removed. She'll keep the feeding tube for a little while until we build back up to eating real food again, but when we go home I can create a blenderized meal for her tube with the Vitamix.
It is much easier for us to do quick updates on Molly's Survival and Thrival Facebook page, so be sure to pop in over there often. We post pictures and everything! I don't think you are required to have a Facebook account to view the page, so it's a win-win situation if you bookmark the link to her page!