Acute Lymphoblastic Leukemia recurrences often are in the Central Nervous System - the brain. For this reason, pre-transplant brain radiation is done at a dosage known to be effective for leukemia. This preventative therapy involves a significantly lower dose than than is used to treat brain tumors.
Today Ryan started his brain radiation. It took less than 10 minutes, and he felt great afterwards - well enough that he want to go to Salem for the afternoon. We made the 20 minute trip, only for him to develop a severe headache. After no response to a couple of Tylenol with codeine, he called his doctor and we headed back to Dana Farber to fill the prescription.
Hoping a nap would help, I took them to their hotel. I had reserved an inexpensive room via Priceline.com in a different hotel so they could have their last night together without me around. In my room I savored the warm chocolate chip cookie given to me on admission along with a cup of herbal tea, and crawled under the covers.
Then Ryan called to say he was throwing up and his headache was worse than ever.
So I got out of the cozy bed and packed up. We headed to the ER for IV fluids, nausea meds and some IV morphine. Since he was scheduled to be admitted the next day the decision was made to just go ahead and admit him. Sophia and I left at midnight to get some rest.
Friday morning, Ryan was still in the ER. No beds were available for admission. Plan B was to have his central lines placed as scheduled at 12:30, followed by brain radiation, then admission. At 1:00 he was still waiting, so Sophia and I went to grab some lunch. While we were gone, the transplant doctor on duty (Dr. Cutler was out of town) came to see him and noted that he had a cough (tail end of a virus MeiLin shared with all of us...), and told Ryan that although they wouldn't be giving him cytoxan while he had an possible infection, they would proceed with the line placement and last dose of brain radiation.
Then Meghan called to ask what was happening because she had gotten a voice mail saying that they were going ahead with her donation "anyway". When she reached the donor nurse she was told that Ryan had been postponed a week, but her collection was to proceed as scheduled.
Two more hours of waiting in the ED with nothing happening. I called our transplant nurse who confirmed the postponement and apologized - she thought the doctor on duty had informed Ryan. Although Ryan was to proceed with the brain radiation, the line placement would wait until his admission next week (makes sense since the longer the lines or any foreign body is in place, the higher the risk of infection). We asked that Ryan be admitted overnight for pain and nausea control.
Ryan tolerated the second radiation dose better than the first, but was glad to be where he got adequate pain relief and nausea control.
Home to New York on Saturday afternoon with Ryan and Sophia, dinner with the family, tucked the girls in, then drove back to Boston to get some rest before meeting Meghan's red-eye from Phoenix at 10 am Sunday morning.
There is no doubt that the decision to delay was the correct one medically. But it kinda took the wind out of our sails. We were all geared up to "git 'er done", and it was disheartening to wait another week.
I had to ask if there was a downside to having a week between the donation and the transplant. Meghan's cells will be cryopreserved (frozen), where up to 50% may not survive the freezing and defrosting. So she will undergo collection for two days for sure, rather than one day with a possible second day. They'll simply collect twice as many cells. The amount of cells transplanted in Ryan will be the same, and will be just as healthy, with just as good results.
---Barb
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