Today we had a lot of appointments in Boston in preparation for stem cell collection which is schedule to begin July 18th.
We started out at the Jimmy Clinic for labs and a discussion with Dr. Lee who is the stem cell transplant doctor.
We had a long discussion about the process. It will start with 8 days of high does chemo that is then followed by autotransplant, which is the giving back of his own stem cells to help his immune system to recover. It was explained to us that this chemotherapy is 3-5 times stronger than what he has received in the past and without stem cell transplant his body would probably never recover. This treatment does not come without it's hardships as well. He will not be allowed visitors for 60 days while his body recovers, he will most likely be unable to have children, his hearing could be effected even more, possible minor kidney injury, not being able to have bandages because one of the chemos doesn't allow for it and requires a daily wash down, and mucositis just to name a few. While this information is extremely scary for Steve and I to hear as parents we know that this is Seth's best chance at fighting off the small amount of remaining disease.
He will likely be hospitalized for 6 weeks as a result of the transplant process but our hope is that at the end he will show zero signs of disease. That is what keeps us going through all of this, hoping that in the end he will be disease free and can live a "normal" life.
After our meeting with Dr. Lee we went over for a dental exam. Yes a dental exam on a 1 year old is as silly as it sounds. Seth did relatively well and they just suggested we start brushing his teeth twice as day but he looks really good.
While at the dentist we got a call from the clinic that his calcium came back really high and they would like to do repeat labs. We headed back over to the clinic to have those drawn quickly before heading to our next appointment. Eliza, Seth's usual nurse was kind enough to give Seth a birthday card signed by all the nurses as well as a very nice train and airplane.
Audiology was up next and we had to head across the street for this. All his prior audiology appointments have been done asleep and this was the first one that was schedule to be awake. They did some quick testing that they've done int he past and then tried some additional booth testing that they didn't think proved to be diagnostic. Seth did look tired so I rocked and bounced him until he was asleep and we got to test his right ear. When trying to switch for the left it just didn't work out with him staying asleep. She said with the testing done in previous sessions, the quick testing they did earlier, and now the testing on the right ear today it seemed as though Seth has lost some more hearing of the higher pitched tones. We can't know for sure because he can't tell us or show what he hears but it's something we will have to follow up on and have checked as we move through the process.
While Seth and I were in the testing booth Steve got a call from the clinic saying we needed to come back over. Seth's calcium was still high and he would receive a bag of fluids before heading home.
Our last appointment of the day was an echo. Seth was less than cooperative with the ultrasound tech trying to get the images they needed but we did our best and moved on to the clinic.
Seth received fluids over an hour. We discussed changing his formula back to Gentle Ease from the Peptide he had been switched to not too long ago for the weekend and we would reassess on Monday during our clinic visit. The Peptide contains little more calcium and they wanted to see if that would make a difference. VNA would also come to the house on Sunday to draw labs as well to see where he was.
For now we were off to enjoy the weekend at home which includes Seth's birthday party :)