Getting Set Up

(originally posted by Wendi)

Disclaimer: I am not as poetic or pithy as my husband. My posts will  contain a lot more rambling and details. This is partly due to our stylistic differences. But it is also because, as I was prepping for this journey, there was not a lot of info out there on what it would actually look like day to day. Genny found some, but they mostly ended sadly. I found one, but the boy's treatment was not nearly as intense as Mark's. I still found comfort, however,  in at least having some sense of what might happen. So I am doing my best to present what this looks like, day to day, for any other parents out there who might just need a little glimpse, for sanity's sake,  like I did.

Greetings from Houston! It is currently colder here than it is at home. Crazy :).

Tonight we are in one of the family tv rooms watching the Lego Movie (which we brought with us) with a group of kids that Bella and Mark have been hanging out with. It's really nice to have a night where the kids can just hang out and be kids.

The move to Ronald McDonald House (RMH) on Sunday was good. The only persistent difficulty has been not having a vehicle. Getting to and from the hospital has been fine, but it does feel isolating to not be able to go anywhere else. We could probably figure out the bus system, but Jim starts Challenge II at a new campus tomorrow and transportation for that is proving difficult. We're good for tomorrow though, and he's excited to meet a new class and have a break from hospital appointments and RMH. We were introduced to a family here who also does CC in Iowa and who also have an 11 year old boy (Jonathan) undergoing proton therapy for a brain tumor. Mom, dad, and big sister are all here. Meeting them took away some of the initial loneliness and they've been great at asking the Drs and staff to be good to us since they have been here for four weeks already and we have all the same doctors.

So, onto the real reason you are all reading: updates on Mark.

Yesterday we had four appointments, two at each center, alternating so that it required a shuttle trip between each one. Did I mention it's cold here?

Our day started out less than promising when we reached MD Anderson and they decided Bella couldn't accompany us to any of the appointments because we don't vaccinate. I got upset, explaining that that would have been nice to know before we left Washington. The woman at registration wouldn't budge, informing me that Bella was welcome to stay downstairs with Jim on the chairs in the crowded lobby. So we left them there and headed upstairs to the pediatric oncology clinic. I mentioned to the nurse checking us in what had happened with Gabriella, how far we'd traveled and how frustrated I was, especially since the vaccination question wasn't listed on the oncology checklist at their front desk. She made some phone calls, called me over, and told me to go get Bella and tell the front desk to call the oncology head nurse if they had any issues. So, crisis averted. The woman downstairs did ask me who gave authorization and did call. She was there again today and didn't question us, but she sure didn't seem happy about it.

We went back up and started the day dealing with paperwork. It was painless and cheerful (thank goodness for our insurance and Frank's diligence in making sure all the details were straight ahead of time - I've heard that this has been a far from painless process for some of the others here). Then off to proton therapy (shuttle trip) to meet our radiation oncologist. They were running behind, but that was fine since there were several people there to meet. Our doctor there is very nice. I like her a lot. She explained the course of treatment and we discussed how Mark's been feeling. I mentioned that his appetite has been low, and they wanted to determine if it was from nausea or something else. The conversation completely overwhelmed Mark, and he broke down in tears. We managed to distract him, but it was a good reminder for us all that he may be brave on the outside, but he's still sensitive and not liking the loss of control on the inside. It seems as if he is worried that he is doing something wrong whenever a "symptom" is pointed out. He wants so badly to be normal again and just not talk about it.

We sent Mark out so that we could finish running through the side effects. They said with proton therapy there is actually starting to be some evidence that as long as the child is intellectually stimulated enough, there might be only a small amount of cognitive delay, and since Mark is so precocious (their words), it may not be noticeable! Yay, good news!

At this point, however, I started thinking I was hearing Bella crying, but the nurse said not to worry, she didn't think it was her. Finally, after about ten minutes, I opened the door to listen. Yep. Sounded like Bella. I found her in the lobby, crying and screaming that she wanted her mommy, Jim sunk low in the seat beside her with both earphones in, everyone else pretending nothing strange was happening. Sigh. I took her back with me, and she calmed down quickly, but what a scene.

After that was a trip back to MDA main where we grabbed a quick lunch in the crowded and overwhelming cafeteria (we have been there twice now, and we still are unclear as to what is offered at several of the stations). Bella and Jim hung out in the cafeteria while Mark and I ran upstairs to get his chest xrays. They were very efficient and we were in and out of there very quickly. This left us a bit of down time, so we hung out in the cafeteria, then headed out to catch an early shuttle back to proton therapy (we had been a bit late the first time over). On the way off the shuttle, a nice elderly man stopped the children and gave them each a backpack with crayons, a few toys and a colouring book. This was a sweet pick me up, as we were all wearing a bit thin by this time.

We got there fifteen minutes early and checked in. They let us know that there had been some complications in the schedule, so they were running about an hour behind. We were trying to find a place where we could all sit together and settle in, when they came over and asked us if we had been made aware of the playroom yet. Nope. Sure would have been helpful earlier :). They have a lovely, large playroom with comfy chairs and a door that closes. Ended up being very useful, since we didn't finish up there until 2+ hours later. This appointment was for Mark's radiation simulation, which is when they make his mask and do the scans that they will use to do his treatment. The Child Life specialist came in and explained the process to Mark. First, they would take a plastic mesh screen with small holes in it and soak it in water. This makes it pliable. They then place the mesh on his face and stretch down over the sides until it reaches the board he is lying on. Then it is bolted to the board and the technician molds the mesh to his face and holds it in place while it dries. She showed him an example of before and after, so he knew what to expect. It did not adequately prepare me.

When we finally got back to the room, we discussed my concern about the hard surface Mark would have to lie on for 30-45 minutes each day, considering that the back of his head is still hurting from the surgery and bothers him when he lies flat. We tried some different options, but nothing seemed to be working. The tech called our doctor in and we conferred for a bit, retrying the different options. The only alternative was to sedate him, but that would add a lot of extra time to each days treatment, plus it would make it harder on him. Tylenol was suggested to help with the pain (luckily I had some in my bag, since the doc said it would take an act of congress for her to get some for him). She felt that he was mostly just nervous, so we worked together and finally got him in a position everyone agreed on so we could proceed, sans sedation.

Time for the mask.

I posted on Facebook that I had nightmares last night. I can almost guarantee you that they were caused by the making of his mask. It is a hard process to describe adequately. The emotional response it elicited in me was visceral and unexpected. Seeing your child being covered with heavy plastic netting and bolted down was a bit unreal and agonizing - it looked like he was being smothered while being set up for some sort of torture.  I spoke to another mom about it, and she said she had taken pictures, but afterwards had realized that she wouldn't be able to look at them for quite awhile. He also had a sort of form fitting foam pillow that was molded to his legs. These are both so that he does not move during radiation,  because the beams are targeted very precisely.  After the mask and leg pillow were made, they did the necessary scans. Everything looked good and they decided he did not need a new MRI and treatment should be able to start next week.

Not much happened after that. A long wait for the shuttle to take us back to RMH. Dinner was mostly gone when we got back, but that was fine (dinner is provided every evening by a different community group. It is really lovely). Hung out, spoke with Jonathan's mom and dad, did our chores, and collapsed into bed.

Today was much easier. We headed in early again, got labs drawn, got to hang out with our friends in the waiting room for a bit, found that the oncology clinic also had a playroom, and today it was staffed :). We really like our oncologist here. He reminds me a lot of our oncologist at home, which is comforting. Again we had to go through the medical history and current symptoms. I was more careful this time, but when I mentioned that he might have been nervous during the proton simulation, he got upset and said it had just hurt. Again, reminding us that he is only 11.  Mark left since we had to go through all the side effects again ( he hates that part). However, I  found out that there is actually a chance at this stage that he won't lose his hair or have serious vomiting issues. He said it's an unknown, but he's seen lots of kids fly through this first stage with very few problems. He said all of that will definitely happen with the chemo he'll get back home, but the stuff here is relatively low dosage. At this point it was decided that chemo and proton therapy both start next Monday. There are also a few other appointments they want to set up for him (neuro cognitive testing, a trip to endocrinology about his appetite, a meeting with the social worker and family life, plus a psych visit), but I have no idea when those will be.

After that, we headed upstairs so they could do an initial access on Mark's port (the permanent iv line in his chest). Mark was really nervous. However, since chemo doesn't start till next week, they said not to worry about it and they would just do it then. Yay. All done and it was only 11:30. The shuttle wouldn't come for an hour, so we grabbed lunch in the cafeteria again and then headed back. We were all exhausted, and Bella had been a handful pretty much since we got here, so we headed to our room for quiet time. She and I both took long naps and Jim and Mark had some time to get things done. Naps over, Bella and I headed downstairs. After a few fun rounds of bingo, we all had a lovely dinner of country fried steak and mashed potatoes. Then the kids hung out for a bit and we headed up to our movie night. I am so thankful for the nap and restful evening. I feel more steadied and ready to embark on the rest of our trip. Thank you all for your continued prayers, thoughts, and support. We love you all and God is good.