Caden Shrauger's Journal
Another Round Done
Written Dec 10, 2013 12:00am by Pam ShraugerCaden finished his 14-day course of cis-RA this morning. He tolerated it relatively well. The dry skin was pretty bad. It wasn't just his lips and face, but his arms and legs, too. The cold weather (we had a high temperature of -8F on Friday!) probably didn't help either. Even the most gentle lotions made him scream. Vitamin E oil was tolerable (and necessary for him to open his mouth enough to eat each morning), so we did as much of that as he let us. He now gets two weeks off before starting another course.
Despite the dry skin, we enjoyed being home and Caden's overall wellness during the treatment. Since the last post, we had a fantastic Thanksgiving with my brother's family. Caden loved eating turkey which was a joy to see since he barely ate much last Thanksgiving. Before the weather got cold, we went into the forest and found a wonderful Christmas tree. Caden really enjoyed decorating it and is excited for Christmas. We've enjoyed some time with Grammy and Grampy and hope to give skiing a whirl again very soon. Knowing how much he enjoyed it at age 2, I'm looking forward to seeing what he can do at age 5.
On Saturday, we went to Fairmont Hot Springs. Caden gets a "wish", and we decided to do this through the Montana Hope Project. We like the local, family feel of the Montana Hope Project which is run by Montana Highway Patrol officers. They are already working on Caden's wish to meet the Blue Angels. They also do a winter and summer reunion each year which is why we were at Fairmont. We had a fabulous time! We are new to the Montana Hope Project, but already, I can't say enough about them. They treated us like royalty. While I might get a little emotional when I think about why Caden is a part of this, I feel really good about the joy they bring to these kids and their families. Caden and Camryn both loved the pool; Caden had his first experience in a pool where he could touch bottom since the vacation when he started complaining of leg pain 21 months ago. And Camryn, for the first time ever (and yes, she's a wild woman). Santa also visited. Caden waited patiently in line, shaking hands with the boys in line in front of him (later asking me if that was okay because they might give him a cold), also shaking hands with the Montana Highway Patrol honor guard, and then eagerly climbed up on Santa's lap. So wonderful to see his outgoing side emerge.
In the meantime, the folks in Houston have Caden's blood, and hopefully, his T-cells are behaving. This past weekend, some promising results from a very similar trial in Philadelphia for leukemia patients were released. NBC Nightly News did a story on it - http://www.nbcnews.com/video/nightly-news/53784650/#53784650
We always have hope that a cure, including Caden's cure, is just around the corner.
Written Nov 25, 2013 11:33pm by Pam Shrauger
This morning, Caden went into our pediatrician’s office and had his blood drawn for the T-cell trial. He also had the required labs drawn for the cis-RA (Accutane) treatment. Eight tubes of blood! Not quite as much as they drew prior to transplant, but a close second. He continues to slowly gain weight and height and has the energy of, well, a 5 year old boy. He thinks the couch is a trampoline and a slide, he loves playing in the snow, and the picture posted here is how he was watching TV while Camryn napped this afternoon.
He did really well for the big blood draw, only cried for a few seconds, and later tonight said it didn’t hurt at all. They got it on the first poke! We then took the tubes in their Styrofoam package to FedEx and they should be in Houston by tomorrow morning. Over the next six weeks or so, in the lab at Baylor, they will extract his T-cells and put a new gene in them, using part of a virus (called a retrovirus), that allows the T-cells to recognize and kill neuroblastoma cells. These engineered T-cells, technically called iC9-GD2 T-cells, will then be frozen until they can be infused back into Caden. We don’t know if or when Caden will be eligible for that part, but we should have a few weeks’ notice.
Dr. Park was unable to find someone that could issue the cis-RA prescription in Montana, so our rockstar pediatrician, Dr. Hodgson, did the necessary paperwork last week, and while we were sitting in his office this morning, got the approval to prescribe it. As of this evening, the labs taken to start the cis-RA treatment came back good. We had some leftover capsules from his last cis-RA treatment, so tonight, Caden got his first dose. It’s a 14-day course, consisting of pills (that Caden chews) and an anti-nausea medicine twice a day. We anticipate dry skin and lips, constipation, and perhaps some moodiness or bad dreams, as have occurred in the past. But, there’s a huge comfort in knowing we are doing something. A big thank you to Dr. Hodgson and Nurse Ryan in helping us get this done here. We are so happy to be home.
The other highlight of our day was meeting Caden and Camryn’s newest cousin, Maverick, who flew in all the way from Maine. He’s already almost 15 months old. I just want to snuggle him; he looks so much like Caden did at that age. We’re going to have a lot of fun over the next few days! We wish you all a wonderful Thanksgiving and thanks for keeping Caden in your thoughts and prayers. We are so very thankful for each day.
Hope on a FedEx Truck
Written Nov 21, 2013 4:05pm by Pam Shrauger
Hope arrived on a FedEx truck this morning. But, hope will have to wait until Monday…
I’ll explain, but first, here’s a little recap of where we’ve been since deciding on a plan with Dr. Park 9 days ago…
Wednesday of last week we had a phone consultation with Dr. Louis at Baylor/Texas Children’s about the T-cell trial. The call was very informative. We learned that the best guess as to when Caden’s T-cells can be infused is late March. This estimation is based on all of the other patients in line in front of Caden remaining eligible and infusing. Being a trial and all, the FDA is requiring a 6 week waiting period between dose escalations (there are 3 dose levels; Caden would likely receive the highest dose). Some legal matters with a company supplying a necessary item for the trial delayed things, but I believe patient #1 was finally infused today. The other interesting thing we learned is that the goal is to ultimately infuse Caden, even if he shows “no evidence of disease”. In past trials, the FDA has allowed this once the safety is demonstrated. Upon completion of this call, we signed the consent paperwork for the procurement of Caden’s T-cells and confirmed the items Houston needed overnighted from Seattle. Those items didn’t get to Houston until Friday (and I’m getting the sense that they don’t work Fridays). Monday and Tuesday of this week the Houston folks were out of town at a conference, so the procurement kit didn’t get shipped out until yesterday.
In the meantime, we learned that Caden could start the cis-RA, as it would not interfere with the T-cell collection. Our local pediatrician, Dr. Hodgson, talked to Dr. Park on Tuesday to make sure the necessary labs would be drawn. We couldn’t move forward, though, because Dr. Park has not figured out how to get the prescription ordered in Montana. The cis-RA is a pretty controlled substance since it can cause some serious birth defects if taken while pregnant. And while plenty of Bozeman teens probably take it for acne, the off-label use for neuroblastoma cannot be written by just any doctor. Last we heard, Dr. Park was “working on it”. I think she’s trying to find a colleague with a Montana license, or something like that, but we have heard very little from her since our call 9 days ago.
So that brings us to today. We anxiously awaited the arrival of the procurement kit. When the FedEx truck pulled in, I went out to greet the driver and spare her from our icy driveway. She jokingly said that the wooden kitchen set probably wasn’t for me. I realized the big box she was holding was a Christmas gift for the kids sent from my sister. Perhaps the driver sensed my disinterest or my scanning the front of her truck for something more. And then she said, and there’s this one, too. A much smaller package, sent overnight priority. With a breath of relief, I told her that was the package I hoped would save my son’s life. She offered her prayers for which I was thankful, but mostly, I wanted her to know that I appreciate the work that she does. Her piece in this process. That not all of her deliveries are people’s holiday gifts or big business. In this case, her truck carried something very important to us, potentially lifesaving.
I had already lined up things with the local pediatrician’s office to do the lab draw today, applied the numbing cream to Caden’s arms to let it soak in, and was about to load the kids in the car when I did one last email check to find one from the trial coordinator in Houston saying they preferred the lab draw be done on Monday in case FedEx had any snafus getting the package to them; they will want to get it in their lab right away (and would have to redraw if it sat over the weekend). So, off the cream came and the waiting continues....
I’m less concerned with the T-cell draw than getting started with the cis-RA. Knowing Caden has this beast still lurking in his body and not doing anything is wearing on me, big time. He still has lots of energy, but any little thing puts Jason and I on edge – is it just a manifestation of our stress or is the cancer growing? Things like Caden starting to chew on his clothing and fingers. And the other morning he slightly wet the bed, but he had had a big cup of water before bed. He’s throwing tantrums more frequently, but Camryn is, too. I’m finding my patience is about to its breaking point, questioning if Dr. Park is really who we should be working with. Is Caden a priority? Or am I just being unreasonably impatient? Does she not think it'll make a difference in the long run? I know I’m not the most patient person in the world, but I’d like to think I’m pretty forgiving. I tend to give people the benefit of the doubt. When she would be late for an appointment, I would be completely understanding, thinking she was probably helping a family with a child that has relapsed or just diagnosed. In my mind, we are now "that family"; we need reassurance that things are being done, that Caden is a priority, that we are doing everything we possibly can. Instead, I feel like we are being left behind, already written off, annoying them with my persistent efforts of trying to save our kid. Perhaps this is emotionally charged, stressed out thinking, and we really don't need to move as quickly as I'd like, but feeling like we're stuck in one spot while the world keeps turning is not easy.
About a day after the cluster of cells in his marrow were discovered, we were given the option of waiting 4-6 weeks and doing nothing and then rescanning. We were not comfortable with this option; the doctors didn't seem to be either. On Monday, we will be 3 weeks from when those cells were pulled from Caden’s marrow. At this point, there’s a part of me that wants to rescan and reevaluate our options, but we’ll see what Dr. Park has to say when she does call us again. Changing doctors would be an extremely difficult choice, but is something we may need to consider, in Caden’s best interest. It’s all so trying on our nerves, minds, and hearts. I will continue to hand it over to God, because it is far too much for me to carry.