Caden Shrauger's Journal
Written Mar 7, 2014 4:00pm by Pam Shrauger
If I can stop the tears of joy, relief, and gratitude enough to type…we just got the call from one of Caden’s nurse practitioners that his scans are all clear. No evidence of disease.
Jason and I both agree that the past week has probably been the most stressful of our lives. Caden has had a series of colds over the past three weeks or so, including pink eye, all while on his tenth course of cis-RA. Many of his issues (fatigue, weight loss, fevers, night waking, pain, sunken eyes)could have been attributed to disease progression, but oh so thankfully, we now know it was related to the colds and cis-RA. He even cried and limped his way off the plane late last night, so I was especially concerned. Between that and an awkward conversation I had with a stranger about it, Caden and I were both in tears by the time we made it to the car. The past few weeks have also been extremely challenging for a handful of friends, too, adding to the stress we were feeling. But the CT, MIBG, and bone marrow tests/scans were all negative for neuroblastoma. So grateful for such mercy.
Caden and I flew out to Seattle on Tuesday evening with appointments Wednesday and yesterday. Then back home again after midnight last night. Since Dr. Park was out of the office, we waited for the call today or early next week. Caden did so well in Seattle. So proud of him (and the nurse) for getting his IV placed, meeting with the nurse practitioner, getting anesthesia for his bilateral bone marrow biopsies and aspirates, waking up and going straight to radiology for his MIBG injection, drinking all of his CT contrast, and then holding perfectly still for his CT. All on an empty stomach. I’ll even forgive him for making me be “NPO” with him. His labs looked great, but he lost a pound from January. We even squeezed in an appointment for new hearing aid molds and a fundraising dinner for the Ben Towne Foundation. Yesterday,he did so well holding still for over an hour for his MIBG scan. The last ten minutes are the hardest, but he does it with little complaints otherwise. Makes my heart burst with pride and at the same time it hurts for all that he has and continues to endure. He’s starting to understand more about the impact cancer has.
We will probably talk to Dr. Park next week, but we anticipate he’ll do a final two rounds of cis-RA and scan again in May. At this point, the Texas T-cell trial is on hold until he shows evidence of disease or the FDA approves the infusion into kids lacking evidence of disease.
Thank you doesn’t do it justice, but thank you for all of your prayers, love, and support. A big thanks to Chris Winn for taking care of Camryn so Jason could work. We are so happy for this reprieve once again.
Written Feb 10, 2014 3:30pm by Pam Shrauger
Caden is doing well. He finished round 9 of the cis-RA last week and should be starting another round next week if his labs look good. He's enjoying swimming lessons; he's gone from not even wanting to get his ears wet to holding his head under for 5 seconds and jumping in the deep end to his instructor.
His next set of scans are scheduled for March 5 and 6 in Seattle. We probably won't have results right away, as Dr. Park will be out of town. Just Caden and I (mom) will be going in an effort to preserve Jason's time off. We hope to take a vacation someday!
If you can believe it's taken this long, I finally unpacked the last of the stuff from Seattle. And guess what I found?? A box full of FC gear! So, if you'd like to order something, send me an email at email@example.com. All proceeds go to Caden's benefit fund. Here's what we have...
Gray Hooded Sweatshirts with black FC scroll in S and XL...$30
Gray T-shirts with black FC scroll in S, M, XL, and 2XL...$15
Kids' Gray T-shirts with black FC scroll in Youth XS, S, M, and L...$15
Gray Tank Tops with black FC scroll in S, M, L, and XL...$15
White T-shirts with small FC (Fight Cancer, For Caden, Find a Cure) in S, L, and XL...$15
FC (Fight Cancer, For Caden) Bumper Stickers in black/white or camo...$3
Written Jan 24, 2014 11:20pm by Pam Shrauger
Caden had his first series of re-vaccinations post-transplant today. He was immunized for H. influenza type b (Hib), Polio, Pneumococcal, Hepatitis A, Hepatitis B, Diphtheria, Tetanus, Pertussis, and a second flu shot (for this season). That equated to 5 shots in the legs! They had two nurses tag team him to get it done quickly (which is what he wanted). He was rewarded with one of the nurses lovingly putting Angry Birds temporary tattoos on his arms (he showed her his real tattoos, too). It was very sweet.
As such, this evening was a little rough. The injection sites were really sore, so he was limping around, not wanting to walk, cried when getting ready for bed, and was quite irritable. Too reminiscent of the time before his diagnosis, but at least we know what it’s from. Hoping he’s more like himself in the morning.
I kept telling myself that it was nice to do something that normal kids need to do, but then I remembered it’s not normal to do all those at age 5. Again. He had them all as a baby (which is much easier, by the way). Yet, on the other hand, I am thankful he is here and these are the things we have to deal with. I wish I could say that he’s caught up, but the re-vaccinating process takes a year, similar to the schedule for infants. Just another one of the screwy things in our constantly changing “new normal”. That and feeling like I have to explain his strange dry peeling skin to everyone. It's definitely somewhat challenging when your kid doesn't have the typical bald head but is in cancer treatment.
So, if you’re watching the Super Bowl (one guess on who we’re cheering for!), look for our buddy Stellablue holding a “hope” sign (and her dad and baby sis) in a Microsoft commercial. There will be a snippet of them from the Stronger video made by another buddy Chris. Can’t wait to see it!!
The Bozeman 3 is working on some pretty cool projects that we hope will help future children with cancer from the Gallatin Valley. More details to come soon.