Now where did I leave off... oh, right. So the last I wrote about was when Molly was just hanging out in the ImmunoCompromised Services (ICS) unit waiting for the doctors to decide to do something else with her open wound.
Molly got a care package from one of Daddy's cousins on April 6th, and that package was the best thing that happened to Molly in several weeks! Big Sis was in the room when Molly got the package, and she helped open it. Inside was some small games, a paddle ball toy, a whoopee cushion, some foam butterfly wands, foam doorknob hangers, and foam stickers, and a small package for Big Sis, among other stuff. Molly perked up almost immediately and we got quite a lot of much-needed interaction, smiles, and laughter from her! It was so much fun, and the only times she lost her good mood were when the nurses came in to check her blood pressure and when I had to go home.
The next day Molly had another dressing change in the OR. I caught a cold, which meant I can't go into the ICS unit at all until I was better, so Daddy took off work to stay with Molly. Before the OR, Daddy got to learn how to change Molly's ostomy bag, and he did an awesome job. Molly handles procedures better if Mom or Daddy can do them, so we try to do as much as the nurses and doctors will let us.
In the OR the oncologists were able to do a bone marrow aspirate since the redness from the allergic reaction to the antibiotic has gone away, and then the plastics team decided that Molly was ready to have the roman sandal device placed to stretch her skin. This was sooner than I thought it was going to be, so I we were all in a pretty good mood that day (except for Molly, of course...).
The next day, Wednesday April 8th, one of the infectious disease doctors said that she's seen 3 other cases of necrotizing fasciitis caused by pseudomonas, and Molly has responded to treatment the best out of all of them! That is such good news! Molly's arm was swelling a bit though, so they did an ultrasound and found a clot in her arm where the PICC line is, so they cautiously put her on a blood thinner medication. The plastics team didn't like that very much, but they allowed it with the condition that she get off the medication on Saturday so that she can clot sufficiently on Monday at the next scheduled surgery.
We have been keeping in touch with the bone marrow transplant people, and they said that Daddy and I can now get tested to see if we might be a match, since they haven't found a 100% match for her yet. They said they don't usually test the parents, but we asked if we could anyway. I guess the cost isn't usually worth it. I asked what it could be that is making it hard to find a good match for her, and the transplant lady said that it's usually easy to find a match for the average caucasian in the USA, but sometimes the family history makes it hard. Daddy is pretty much all European in his family history, but I have Mexican and Native American in my lines, so that's probably the hiccup. We'll be getting tested sometime next week.
Thursday was fairly uneventful. On Friday I finally got a chance to wash Molly's hair with shampoo in warm water (she's been getting sponge baths, and those don't do much for hair), and I found a big knot on the back of her head that I could not untangle, so I ended up just cutting it out. Sometime this next week I will be evening out her hair length, as it is kind of crazy right now! She doesn't seem to mind it much though.
Molly's surgeon met with us Friday night to go over the plan for her big surgery to finish up all these side complications. He said that he met with all the other surgeons and discussed Molly's case and they figure we have 3 options for Monday: #1 we can remove her mostly-necrotized rectum, reverse the ileostomy and stitch her small intestine back together, pull her colon over to the right side where the ileostomy was for an end colostomy, and then stitch up anything else that is still open. #2 we can leave the rectum there with the hope that in the future we might be able to connect her intestines back up but suture it closed for the time being, reverse the ileostomy and do a colostomy, and stitch up anything that's still open. #3 we can do nothing but a dressing change so we can have a few more days to decide. We brought up something I heard about in one of the Momcology groups on Facebook: the Children's Hospital of Philadelphia (CHOP) is conducting a research study on ovarian tissue cryopreservation in female cancer patients. I asked if we could do something like that for Molly since the radiation she'll be receiving for her bone marrow transplant will likely cause her to be infertile. The surgeon had never heard of anything like that, but he promised to ask the other surgeons as well as the oncologists to find out if it's possible.
The weekend was a little busy. Big Sis had her state tumbling meet on Saturday, and Grandpa on Daddy's side stayed with Molly so Daddy could be there too. Then Sunday my family and a couple close friends came to visit Molly. She was very interactive for all the visits, much to the pleasure of everyone that visited! It was so good to have everyone over for a little while.
Daddy and I talked about the surgical options over the weekend and early Monday morning the surgeon came by to check in with us before Molly's surgery that day. He said that they talked about Molly for almost a full hour that morning in rounds and they decided they would not recommend leaving the rectum there at all. Also they got a little more information about the ovarian tissue cryopreservation, but they haven't ever done that here in Utah. He said that the oncologist is contacting fertility specialists at Northwestern University where they are also conducting a study on this topic and he will hopefully have an answer very soon about whether it would be possible or not. We decided to postpone the full surgery until Wednesday because of this fertility possibility, and go ahead and do a dressing change and see if the plastic surgeon can stitch her crotch wound up a little.
To be continued here...