We finally got to meet with the oncologist today, get our questions answered, and learn all the details about Myelodysplastic Syndrome. Here are some ‘fun facts’ for you:
- MDS is considered a cancer of the blood
- It has the exact same chemotherapy treatment as leukemia
- MDS is more common in people with chromosomal disorders, including those with DS
- People with DS respond better to the treatment than those without
- The chemo doses for kids with DS are smaller than for those without because the normal dose would be toxic to them (but they still get just as sick)
- MDS is more common in men and the average age of those diagnosed is 71
- MDS in children is very RARE (Averi’s favorite word) and is different than the kind found in adults
Luckily, Dan was able to get off work for the morning and came with us to the appointment. I walked in thinking we were going to have a rough month ahead of us and was blown away when we learned that the treatment is actually a minimum of 6 months, in and out of the hospital.
The chemo consists of 6 different cycles, some of them starting with a spinal tap to make sure that the disease has not moved to her spinal fluid. She will be given a 4 day treatment of chemo and then kept for observation for 2-3 weeks until her blood counts start to increase. Then she will be allowed to come home for a week before the process is repeated for a total of 4 times. The last two months consist of her receiving a different drug which is given for 7 days and then she will hopefully be able to return home to recover for the three weeks in between. This is part of a nationwide study specifically for the treatment of Down Syndrome children with MDS under the age of 4.
I asked him what our time frame was (i.e. could we wait until after the holidays) and he said we would need to start within weeks. Her platelets are still really low (down to 32 from 86 after the transfusion last week) and he doesn’t want to give her too many transfusions if he can avoid it, simply because there is a risk every time and she will already need several during the chemo. In fact, we are going back on Friday for more blood work and most likely another transfusion.
They are going to put in a central line (a catheter surgically placed in a vein in the chest for easy administration of drugs). I’m excited about this because it means they won’t have to try and get IVs in her all the time. The only thing is that she is too small for an internal one, so it will have to be an external one that hangs off her chest (one more thing for her to pull on). This will be placed under general anesthesia, along with her first spinal tap, when she is first admitted to the hospital.
We were also told that Averi’s immune system will be greatly compromised and that our whole family and anyone else who is coming to visit and help will need to get flu shots.
It was a very overwhelming visit so Dan took me out for lunch. I kid you not when I tell you that my fortune cookie read as follows: “New people will bring you new realizations, especially big issues.” I’m wondering if the new oncologist thinks that cancer is a big enough issue. Meanwhile, Averi is happy as can be!