Friday, April 17, 2015

Molly's big surgery, part 2

Continued from here

The surgery on Monday went perfectly. The plastic surgeon was able to get the front part of Molly's wound all stitched up and he tightened the stretching stitches on the back part. He said it looks very good and he's very optimistic that he will be able to get it all closed up well on Wednesday. The oncologist found me that afternoon and said that he has been talking to a couple of doctors at Northwestern University, and they are sure that we can get her ovarian tissue preserved! That was such great news, since we were really sad when we heard that her chances of having biological children later on will be basically non existent after radiation. He said that he was working with the fertility lab at the University of Utah Hospital and they will cover the cost of extraction (which is easy since the ovaries are right there in the way when the colon is accessed), the pathology costs (to make sure the tissue is healthy and worth preserving), the freezing, and the first 60 days of storage.

Tuesday night, the fertility doctor from UofU came by to meet with me and Daddy and explained more about the whole process. Basically, they remove one ovary, send a very small piece of it to the pathologist, slice the rest into small pieces and separate them into about 30 vials, use a special slow-freezer to freeze them, and store them until we're ready to have them shipped to the long-term storage facility. Then we'll pay a yearly storage fee ($300-$500 probably) until Molly wants to use the tissue, at which time they will go over the options we have, hoping that medicine advances enough in the next 20 years to increase the chances of successfully maturing the follicles and achieving pregnancy. He explained that when you freeze cells there are always some or all that end up dying, so there's a very real chance that 20 years down the road when Molly is ready to use this tissue, we will have no success with it, but it's worth a shot. He also told us that they have been back and forth so many times in the last two days about whether we would be able to do the preservation or not, not because it is a hard procedure to do, but because they simply don't have the equipment anymore (they used to have the equipment for other research 7-8 years ago but have since gotten rid of it). He said that they were able to find the equipment they needed though, and the special solution they need to put the ovarian tissue in is on it's way so they should be ready by the time they remove the ovary the next morning.

On Wednesday April 15, Daddy took work off again for the big surgery and we got Molly all ready with a sponge bath. I walked with Molly and her bed down to surgery while Daddy took Little Brother down to the surgery waiting room. Big Sis was at Grandma's house for the day. I stayed with Molly while the OR nurses gathered all the paperwork together and the anesthesiologist gave me the rundown of the risks of anesthesia. The oncologist came by and told me that they are all ready to preserve the ovary, and that the bone marrow aspirate results showed the leukemia is still in remission. He said that he and the rest of the team are still talking about putting Molly on low-dose chemotherapy drugs to keep the leukemia in remission while she heals from these other things. The surgeon then came by and said they are all ready to go on his end, and he's got the plastic surgeon coming in after he's done with the rectum removal, ovary removal, and colostomy to stitch up the rest of the open wound she's had for the last three and a half weeks. The operating room was ready for her at that point and I sent her off with the nurses and went to the waiting room. She went in at 10:30am.

A few hours later, the surgeon came out to let us know he was done with his part. He said he was surprised at how necrotized Molly's rectum was, and he would have removed it anyway even if we went in thinking we were going to leave it. He said every other part of the surgery went as planned, they got the ovary sent off to the fertility department, and the plastic surgeon is now in there closing up her open wound.

About 2 hours later, the plastic surgeon came out and gave us a rundown of what he did. He said the front part he stitched up Monday looked very good still, and he was able to get the back stitched up to where he was happy with it. He had to move muscle around a little though. He showed us pictures of what it looks like (don't ask to see them...we're only showing grandparents, and only if they want to see) and we could see she will need a lot of surgical reconstruction in 10-15 years to make things symmetrical again. Until then, she will be just fine with what she has left. Bottom line now is she will retain control of her urine, but the colostomy is permanent.

Molly's recovery from surgery has been good the last two days. Yesterday she slept most of the day, and today she's awake and talking about stuff, watching TV mostly. The plastic surgeon wants her to stay in bed with minimal movement and he said she will go into the OR again on Monday to look over how things are healing and hopefully remove the drainage system they put in to keep fluids from building up. The general surgeon called me last night to tell me the pathology department got back to him regarding the health of Molly's ovarian tissue, and they said that they found loads and loads of healthy follicles there, so that is really great news! We now need to hope the cryopreservation process doesn't kill all of them, that she will survive the leukemia, and that there will be something we can do with them in 20 years if she wants children.

We got visits from the child life specialist and the occupational therapist today, and they are hoping to take Molly down to visit the playroom on the 3rd floor sometime next week. They said that she can go down even if she's in her bed, and Big Sis can be there too and they can play together. Things are sounding more and more normal for Molly, it's making us so happy! The surgery on Wednesday and her fantastic recovery so far is almost like Christmas for me!

Thanks again for everyone's support! You have all been amazing! We've got a long ways to go still, but I don't know how we could've come this far without your help!

We've created a Facebook page for Molly! Come "like" the new Molly's Survival and Thrival page!

Molly's big surgery, part 1

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...

Sunday, April 05, 2015

Post-Operation Recovery

For the first week after the surgery to remove Molly's infected skin she was in the Pediatric Intensive Care Unit and on a ton of medicines to prevent any type of infection. I don't know exactly which ones she's on, when they started them, why they started them, and when they started taking her off of them. Things are so fast-paced here that I can hardly keep up.

At the PICU Molly eventually got to a point where her blood pressure was pretty stable and she didn't need quite as much of the medicines she was getting, so the doctors there decided that she could move back up to the ICS. Since they absolutely will not make exceptions for babies and siblings to visit PICU patients unless there are very special circumstances, I had some family sit in the PICU waiting room with Big Sis and Little Brother during the day so I could sit with Molly and then just pop out for a bit every couple of hours to nurse Little Brother and make sure Big Sis was behaving well enough.

Molly got transferred up to the 4th floor again after Daddy got back from work on Wednesday March 25th (5 days after surgery). Then the next day her ANC suddenly jumped up from 0 to 0.4! The Neupogen (white blood cell growth hormone drug) is working! She had a dressing change again, which meant no food for about 8 hours before. Molly doesn't seem to mind not eating anymore, but she still requests water often.

After the surgery, one thing we've been watching carefully is swelling of her abdomen. She had pretty bad swelling of her body and legs and feet which got worse until we got to the ICS, and there they gave her a diuretic which helped a lot with that. Currently she is not taking as much of the diuretic, and her swelling is still going down.

On the 28th, Molly's ANC went up to 2.5 (she's never really been up higher than 1.5 in the last two years, so this is a really big number for her! Normal is between 1.5-8.5.) Then it was 3.2 on the 29th, and 5.8 on the 30th, so they stopped giving her the Neupogen shot.

Doing well on March 31st, preoccupied with picking dry skin off her lips and fingertips.
As far as the open wound goes, they have been replacing the wound VAC every few days, but the plastics team have been checking for healing tissue around the wound and at first they were thinking of placing a synthetic skin dressing called Integra on her wound to help heal it until her body is strong enough to deal with a skin graft. Now they are telling us that they think her wound is looking good enough to be able to stretch the skin around it and just do a small skin graft in the widest wound area. This is very good news for Molly.

The oncologists are still concerned about the leukemia Molly still has to deal with, but they know that this open wound is the priority right now. They are pretty certain the last block of chemo got her into remission, but they aren't able to confirm that with a bone marrow aspirate yet because last week Molly got skin redness that started spreading at her wound and went up to her scalp in just a few days. Turns out she was having an allergic reaction to the antibiotic Meropenum and once we stopped giving her that and started a different antibiotic, the redness started going away. The oncologists are hoping to get an aspirate done this next week. They say that if the leukemia does start to have more of a presence again, they can use certain chemo drugs to hold it off for awhile while we finish healing this skin wound. They really don't want to subject her to more heavy chemo and radiation until she's healthy again.

The bacteria that they say caused the skin eating rash is pseudomonas. They also found this bacteria in her port implant, and it was proving difficult to get rid of with drugs, so they ended up removing her port during one of the scheduled dressing changes and placing a PICC line in her left arm. After a few days, that PICC line developed a clot at the end of it and so they removed that and placed a new PICC line in her right arm. Molly has been having some pains in relation to her wound and the PICC line and her swelling, so they have her on morphine still, and she has a button she can push to get another small dose of morphine every 10 minutes. She usually declines pushing the button though, saying all she needs is to rest and it will stop hurting. She's so strong.

Right now Molly is just hanging out in her room in the ICS unit, passing the time watching just about every animated movie made (Ratatouille is still a favorite, but she's watching Cars and Monster's University a lot too), and enduring the every-4-hours vital signs check and the constant visits from doctors from just about every department in the hospital. She's got the oncologists, the ICS team, the plastics team, the physical therapy team, the infectious diseases team, the dietitian, the urologists, the wound VAC and ostomy team, and several others I am probably forgetting. The trouble is that all these teams show up at different times from each other, and so she gets a visit nearly every hour from someone until the afternoon where we have a few hours undisturbed.

Molly had a rare energetic minute, and we played a modified version of pictionary. This is a cat she drew. Taken on April 3rd.
The Intermountain Healthcare system of hospitals lifted the flue season visitor restrictions on the 2nd of April, so now siblings younger than 14 can come see patients, and that means I can bring Big Sis and Little Brother in to Molly's room with me while I am there. This makes things so much more convenient!

Molly gets a lot of gifts sent to her, and she loves to open the packages, but she never really keeps the gifts for herself. She is more of a "quality time" kind of kid, so she's been regifting most of the stuff she receives to Big Sis or Little Brother. She really loves to give them stuff, it's so cute.

Sorry for the punctuated format of this post. As I mentioned, things are happening at a very fast pace and it's hard to find the time to frequently post, so my posts get written less frequently and I just have to try to remember everything that has happened. If you'd like, you can visit my Facebook page where I post more frequent Molly updates publicly.