Stephen’s cousin, Daniel, gave Stephen a poster with a picture of Rocky Balboa on it. It reads “Going in one more round when you don’t think you can. That is what makes all the difference in your life.” Here goes another round.
The treatment plan has not been decided on for sure. The doctors are discussing Stephen’s case in their Tumor Board meetings and are gathering ideas for treatment from around the country as they collaborate with other doctors at conferences.
This is what we do know, and what has happened so far.
First, the PET scan and CT scan show active metabolic activity surrounding his esophagus. It starts about where his collar bones are. There is a conglomerate area that measure as large as 5 cm by 3 cm. There are other smaller groupings as well. They appear to be active Hodgkin Lymphoma and they measure larger than they did on his PET CT scan that was done before his first transplant. The activity appears to be located only in this area. The first step is to confirm that it is, in fact, Hodgkin’s. Today a lung doctor did a biopsy of the lympnodes. This was done by going down the breathing tube and then punching a hole through the wall with a needle and taking a biopsy. The sample is then brought back up the breathing tube. It should be a relatively simple procedure. It turned out to be quite difficult for the doctor to do. For whatever reason, he said it was like trying to punch through concrete. He thinks it is because the lymphnodes in the area have so much scar tissue in them. He had to try 8 times. He finally changed needles and had Stephen cough at the same time he pushed the needle through. Stephen was under conscious sedation so he could follow commands but doesn’t remember any of it. The doctor isn’t sure if the tissue sample he was able to get will be sufficient or not. If not, he will have to do a more invasive surgical procedure and get at the lymphnodes from another direction. To add a little insult to injury, the length of time Stephen had instruments down his throat caused his uvula to swell and become very large. So he feels like he is choking and gagging all the time. He is being treated with some Prednisone but mostly it just takes a couple of days to go away. He just sits with his head hanging forward so he won’t gag! He has rightly concluded that little annoying pain is much harder to bear than big pain.
If the biopsy confirms the Hodgkin’s diagnosis, the only curative treatment (or treatment with a past history of a cure) that hasn’t been tried is an Allogenic Stem Cell Transplant. This is the same process as his other two transplants but is done using donor stem cells. The best candidate for the donation of the stem cells is a sibling. Luckily Stephen has a few of those. Today Sarah gave a blood sample and Jennie and Jared will by the end of this week. It takes a week to get the results of the type matching back. If needed, parents, extended family members or a national bank of donors can be used. Many people have offered to donate their stem cells if we need them to. Thank you so much for the offer. It is such a tender gesture. I had a friend make a great suggestion, Stephen may not need your Stem Cells but there are people all over the country that don’t have siblings or have been adopted and don’t have biological siblings. Consider being tested and placing your name on the national registry. Often a better match can be found using this database than by using family members. Just a thought. I think I will check into it sometime as well. What a great gift to give someone. It causes a little discomfort for a day or two, but other than that, there is no risk.
That is where we are so far. We are looking toward an allogenic stem cell transplant. First, confirm the diagnosis. Second, find a matching donor. Third, we will meet with doctors and they will present their treatment plan and the risks and benefits associated with it. Then we will decide what to do and move forward.
In the meantime, Jeff and I felt strongly that Stephen needed a little TLC and a companion who didn’t talk back to him. Check her out in the pictures below. Her name is Perlita (Little Pearl in spanish).
Thanks for your continual outpouring of love and support. I’m not sure we deserve it all but we surely appreciate it! It really helps.