Tuesday, May 27, 2014
We were hoping that today was going to be Josiah’s last chemo treatment. We were very disappointed to find out that his counts came back too low to receive treatment. Hopefully his counts will be up and next Monday can be his last treatment! The moment we walked into the clinic Josiah said “I want a pancake!” His breakfast was ordered and delivered right after checking in and accessing his port. He was one happy boy.
We discussed Josiah’s “off-therapy plan.” Right now, Josiah will have treatment on June 2 and an MRI on June 5th. They are hoping to do a sedated hearing test at that time as well. Hearing loss is one of several late effects of chemotherapy, so they want to have a baseline to go off of. If the June MRI looks good, then we will schedule a time for surgery to remove the port. The port needs to be removed as soon as possible because it poses a high risk of infection. If not removed, he would still need to be admitted into the hospital for any fever he would get. Josiah will then have an MRI every three months for a year, every 6 months for three years and yearly for three years after that to monitor the tumor. After the 7th year of no growth, the chances of re-growth are about 1%. Josiah will continue to have labs drawn and exams at the time of the MRIs as well as every year until he is an adult. The purpose for this is to monitor for late effects of the chemotherapy. Josiah will start the re-immunization process with his regular doctor in December. Josiah’s full immune system will not be recovered until 6 months after treatment. Josiah will, of course, continue seeing the endocrinologist and ophthalmologist to monitor his pituitary gland deficiencies and vision.
We did ask about the plan for if a future MRI shows growth. The first step would be to do another surgery for a biopsy as well as try to remove what they can. He would then start another chemotherapy protocol based on the biopsy results. The chemotherapy he would need in that case should be available to us in Columbia, which was a huge relief to me. Hopefully not something we will ever have to worry about, but good information to know nonetheless.
Whew. That was a lot of information. It didn’t seem like a lot until I started typing it out. As we were prepared for today to be Josiah’s last treatment day and have been preparing for his “End of Chemo” party in June, I have a lot of mixed feelings.
Even though the chemo is a horrible thing to go through and I’d never wish to continue, we’ve fallen into a nice routine. The last 16 months have been spent with a weekly Monday visit to the hospital. You’d think those days would be the worst. They were honestly one of the best days of my week. We enjoyed getting to know the nurses and doctors. They were pretty calm days, with the exception of a few “exciting” allergic reactions. Our oncologist always tells us to “keep it boring” and that’s exactly how a hospital visit needs to be…boring. I can tell you, an allergic reaction is far from boring! Josiah would sleep, he felt good and was mostly happy, Nathan brought me lunch and we had ice cream for supper…shh don’t tell the kids!. I was comfortable knowing that my other kids were being well taken care of by my mom or mother-in-law, and our house was being cleaned by them as well. 🙂 The rest of my week…that’s when it got crazy! I had the three other kiddos to take care of, meals to prepare, Josiah’s need to be held and sleep patterns mimicked those of a newborn baby and the once cleaned house was definitely not in that state anymore. Tuesdays Josiah was taking Benadryl and a steroid to avoid a rebound allergic reaction. He was tired and cranky. Some Tuesday nights he would throw up. Wednesdays and Thursdays were when he started not feeling the best and not really eating as much, and he usually had vision/occupational/physical therapy. Fridays and the weekends were pretty good, which was great, considering it was the weekend. Perhaps the fact that Nathan was home helped quite a bit with that.
I am very happy to be done with treatment. But it’s also the start of yet another journey into the unknown. I wish I could say that once chemo is done that we are done dealing with this tumor and can go on without worrying any more. Unfortunately, that’s not how this one works, for many reasons.
- It can grow back. I honestly don’t feel like it’s a question of “if” but “when.” 3 months, 3 years, 5 years? When? My biggest fear with coming off of chemotherapy is that the ONLY time in the 2 ½ years of Josiah’s life this tumor has NOT been growing is the last 15 months of treatment.
- Late effects of chemotherapy. Hearing loss being one of several.
- Josiah will still have physical and occupational therapy to work on his right sided weakness.
- Josiah will still have his pituitary gland deficiencies (endocrinology) and as he grows we will learn what other hormones may need to be replaced. (One hormone being monitored closely now is growth hormone; which, if needed, cannot be started until 2 years post treatment-because the drug replacement could cause tumor growth.)
- We will continue to learn Josiah’s vision limitations.
I don’t want to dwell on the negative. We will take each day as it comes and thoroughly enjoy our next three months off. It won’t be spent with worry. But I won’t stop praying for Josiah. We don’t want you to stop either. The need is still there, but we can still celebrate the small victories in our journey. We plan to do so June 28th. There’s still time to RSVP and join us!