Regrouping

Bennett visits the Wild Animal Park...Thanks Grandma and Lee!

After a very emotional day yesterday, Matt and I are regrouping. Now that Carter’s path for liver transplant has been carved out, we are developing a new thinking process. Unlike resection surgery, this is not something we will leave behind us in a 5-6 month period of time. This will be a new lifestyle. Carter will require to be closely monitored for the next two years and remain on meds and followed by the transplant team his entire life. I have to believe our family was chosen to take this path to help others in the future; otherwise it’s just not fair to do to a young family and little child. Our battle now is not to just make Carter cancer free, it is for his body to accept this new organ for (what we are hoping) the rest of his life. It just added a whole new level to this ordeal. Carter is fighting a good fight and we know he can do it. It will not be easy though. The next 6 months will be very intense, and this new baby on the way will have to join the roller coaster ride with Matt, Bennett, me and our extended friends and family.

We have become so accustomed to being at CHOC, Matt and I had a bit of an adjustment at UCLA. First of all, yesterday was a terrible and exhausting day. Then, they took us to our room at 6pm and had a metal crib in it for Carter. Well, since the beginning of his treatment, we have not had Carter in a crib in the hospital. We wanted an opportunity to hold him and be there if he is scared through this process. So, one of us always sleeps in a bed with him while at the hospital. CHOC does this with many families and it’s your preference and never an issue. At UCLA, we had to talk to several nurses and doctors, and offered to sign any papers that would be necessary. Finally, at 10pm we got a bed. Earlier in the recovery room the doctor had asked Carter if he was hungry and wanted a popsicle. He, of course, said yes (he hadn’t eaten anything for 20 hours)…but really wanted pretzels. A popsicle is what he got first after the last MRI, to make sure his stomach could tolerate it. Well, the doctor or nurse did not bring anything to him and continued doing testing and charting (and now all Carter could think about was food). They told us we were going to our room soon and we’d get something there (which was a couple hours later). Then, the doctor mentions when we get into the room that Carter will be on a liquid diet for 24 hours. This is a child who wasn’t eating at all less than a week ago and is now begging for food. After “talking” to the nurses, Matt and I told them to bring Carter a popsicle and we were going to wait an hour after eating it to make sure he could keep down food. Then, we told them we were going to give him pretzels or anything else he felt like eating (which we knew would probably just be pretzels and Cheerios). Sure enough, an hour after eating the popsicle, Carter was eating pretzels and was so happy (and kept everything down). He was shaking putting them into his mouth and it was like he couldn’t eat them fast enough. Poor guy! Within 20 minutes, he was acting like the happy Carter we know so well. Matt and I were so glad to be Carter’s advocate all day, and realize we’ll probably have to do that a lot through this crazy process.

One of the main doctors that leads the liver transplant team at UCLA is wonderful. She came into our hospital room last night and answered our many questions (and allowed us to both break down a bit) until well after 9pm. The first thing she said when she came into our room is that she is so glad this is the path the surgeon (and I mean THE surgeon) decided to go down with Carter. She said this simply gives him the best chance. She thought from the beginning we were a 50% chance of transplant and thought the resection may end up being a complicated one. She said she’s seen many borderline resections and they end up having a recurrence of cancer. We do not want this to be the case. We want Carter to just battle this cancer once and move on. As challenging as it will be, transplant is the way to go. She said with cancer you want to have as aggressive of a surgery as possible, and this is it for us. She said Carter won’t be limited on what he can do in life (contact sports, etc). And she also prepared us that once Carter is on “the list” (which will most likely be tomorrow), we have to be prepared to get the call and drive to UCLA immediately. The surgeons go to where the liver is and will survey it and see if it is a good match for Carter. She said we could go through the entire admittance process, and the surgeons may decide to pass and we go home and wait again. They have a family that has flown out from Arizona three times already with no new liver. So, Matt and I are now mentally prepared for that scenario. From the time the liver is removed from the donor, they have 8 hours to transplant it into Carter’s body. It is important for Carter to stay cold and cough free during this waiting process, or we will simply lose our opportunity. So, he’ll be pretty sheltered over the next few months. We’re hoping Bennett doesn’t get exposed to anything too, because we don’t want to have to separate them. Carter had a chest x-ray, an echo of his heart and blood work done to complete what they needed to put him on the list. UCLA had already done a lot of preliminary testing in case this was the path we ended up going down. It’s just crazy he is on a liver transplant list (first of all) and as early as tomorrow.

An extremely emotional aspect to all this that Matt and I have a hard time getting past is that our family is waiting as another family has an unexpected tragedy ahead. This is the most amazing gesture a family can do, and I’m sure a very difficult one. This decision for them can save our son’s life. I don’t know if this is something Matt or I will ever get past, or ever want to for that matter. It is incredible, and hard for us to swallow. We can just be appreciative and allow Carter to lead his best life forward for everyone!

Our struggle up until Monday was getting Carter’s white blood cell count and ANC up. Unbelievably, it went from 73 on Monday to 6,000 today. This is a huge rebound. Upon hearing these lab results from UCLA, CHOC was ready to admit us for Round 4 of chemo tomorrow (Thursday). Matt and I were so disappointed to hear this and really feel like Carter needs a break. He just wants to go home, and (frankly) we need the break too. This next round of chemo will be slightly lessened because Matt and I expressed that we were concerned about Carter being more and more worn down each round. And now, we want him to be his strongest and healthiest for transplant. They do need to continue chemo during the waiting process to maintain this tumor we have worked so hard to shrink down, and be certain cancer doesn’t begin to grow in any other areas. Well, we didn’t get home from UCLA until 5pm tonight. And we called and asked our doctor if we can have this time to allow Carter to heal a little more and be admitted on Monday instead. His counts may show it, but we don’t believe Carter’s body is ready for another round so soon. We were relieved that the oncologist is allowing us this time. So, we will enjoy our weekend and try to digest all this new information.

**Special thanks to Kristen Venick for being a shoulder for us to cry on the past two days, and being an incredible resource. It’s crazy to think your husband may be the one calling us with a liver for Carter!