We went to Boston last weekend for a mini family vacation at a hotel with a pool - timed to coincide with Meghan's trip for her preliminary testing. The "kids" (everybody but Tim) and I went on the MBTA to the Aquarium and Quincy Market, and the little girls spent a lot of time in the pool. Tim and Sophia and the girls left for Albany on Monday.
Meghan's appointments on Monday included lab work, a meeting with a social worker, and a visit and exam by a physician assistant who gave us lots of details of what she can expect. She flew out later in the day, and will return to Boston on Sunday, October 14th (taking a red-eye after church activity she's in charge of) to begin her injections. She'll get daily injections of Neupegen to rev up her body's production of white cells and stem cell for 4 days. On Thursday, they'll harvest the stem cells using the same phoresis technology that was used on Ryan in the ER that first night to remove his extra lymphocytes - except in her case they'll be drawing off mainly the stem cells. The lab will "count" them and then they will be infused into Ryan very soon thereafter. If they were unable to harvest enough, the process will be repeated on Friday.
Meghan has some friends in Boston. She's hoping to see them while she's in Boston, and I am looking forward to spending some time with her.
Ryan and I stayed on in Boston Monday night for Ryan's appointments on Monday. His first appointment was with the radiation oncologist. She advised us of the planned CNS (Central Nervous System - brain and spinal cord) radiation which will begin as an outpatient on Thursday, Oct 11th, and will be repeated on Friday. To stabilize his head during the radiation he was fitted for a mask. To do this, they heat a plastic mesh sheet and press it down over his head. When it cools it hardens and holds his head firmly in place during the radiation - if looks like a mesh bag for onions, only hard.
And the TBI - total body irradiation, which will be divided into 7 doses over four days. Sobering discussion of the side effects and potential complications. Short-term, Ryan can expect to be extremely weak and tired. Long-term: expect development of cataracts at a younger age, and thyroid failure. My understanding was that both are pretty much expected rather than possibilities. There can be swelling of the parotid gland and mouth sores. Consents signed - what choice do we have, really? Glad he'll be alive to have cataracts and hypothyroidism.
(We watched Jumanji with the girls last night - couldn't help but draw an analogy: we have to play the game through to the end.......)
Then on to meet with a social worker. They offer emotional support and practical support such as help finding housing for the "Caretaker". Since Meghan's social worker wanted to meet with her alone, I excused myself so that Ryan could speak privately with her. Frankly, I'm amazed at how well Ryan and Sophia have done emotionally through this thing so far. Yet this is the first time any kind of emotional support has been offered. Interestingly, after she spoke with Ryan, she suggested that I contact local church members, saying she knows that the Mormon Church is a great support network.
Next we met with Pat Byrne - our transplant nurse case manager. Pat is perpetually upbeat and was the first one to tell us that Dana Farber was going for a CURE - not remission or control. So we can't help but be very fond of Pat. Pat explained the procedure from start to finish:
Thursday, October 11: Ryan receives out-patient CNS radiation - just a few minutes.
Friday, October 12 - Ryan is admitted and has 2 central lines placed in interventional radiology. These are large-bore IV's placed in his chest into large veins through which he can receive chemo, fluids, nutritional support (for when he will be unable to eat), transfusions, etc. Then he receives his second and final dose of CNS radiation.
Saturday, October 13 - Ryan gets high dose cytoxan chemotherapy. It has bladder toxicity, so he will also be flushed with IV fluids and will need to empty his bladder very frequently. This will also be given on Sunday. He'll lose his hair again.
Sunday, October 14 - Second day of Cytoxan for Ryan. Megan arrives and starts her Neupegen.
Monday through Wednesday: Ryan gets twice daily TBI - total body radiation. Meghan gets daily injections - she might feel well, and might have flu-like symptoms.
Thursday - Ryan get his last TBI. Meghan has phoresis. Ryan receives the transplant. The transplant itself is pretty "anticlimactic" - just a small bag of cells into his IV.
Friday - Meghan get is second day of phoresis if needed and Ryan will get those cells. Ryan's new cells start to find their way to his marrow.
Pat told us what we need to do before and after to protect Ryan from infection. The dietary and social restrictions. And more. He needs to change his clothes daily. Keep visitors to a minimum. Visitors will need to wear masks. Luggage, etc, that might have germs can't enter the room. There will be very close monitoring by his nurses. He'll have frequent blood tests to follow his progress.
She says Ryan is their "poster boy" - that everyone involved in his care is so thrilled with his remission, and that he has made a personal connection with each of them. They're all rooting for him.
For our part, we feel like we've been surrounded by angels ever since we arrived at Dana Farber. The positivity and personal care we've received has been really impressive.
Then labs.
Then his appointment with Dr. Cutler - his transplant physician. But it's getting late, so that's a story for another post.........
---Barb
Barb, thank you so much for posting this. You had told me the schedule and I tried to remember them but couldn't remember the daily details. I just can't stop thinking about you all, especially Ryan. I txt him occasionally but I don't want to be intrusive, I want him to know he's not there alone and forgotten.
ReplyDeleteI will continue to pray for you all and feel hopeful that cure is what's in store.
Hugs to you all ~ Rene'