Monterey, Marrow, Math

Friday morning we escaped as a family to Monterey for the weekend. We desperately needed to get away from some of our realities and just be normal (or normal enough). Our options of getaway locations is somewhat limited as we must remain within a 2 hour proximity of our hospital (not any hospital) and remain in cell service. We stretched the distance a bit with Monterey, but the doctors were aware of it and a blood and platelet transfusion just before Thursday's discharge gave William an extra boost.

We spent parts of two days at the Aquarium, played in tide pools, went out for ice cream, ate delicious clam chowder, walked and walked, and just enjoyed escaping from our everyday routine. We finished off the trip by spending Sunday in the Bay Area visiting my brother and sister and their families. The boys were beyond excited to see and play with their cousins and it was nice for Ryan and I to have a few scattered moments to visit with the adults.

Thank you to the cleaning fairies that cleaned the house when we left! I so appreciated walking into a clean home late last night. And it lightened my load today since we were back at the doctor's office this morning and thrust back into unpredictability of our lives.

The myriad of test results from last week came back and were the focus of today's office visit. It's been an emotional day and I have to keep reminding myself that William is still making progress, even if it's not the way it was supposed to neatly play out. I feel drained and tired, so I'll be brief.

The bottom line is there are still cancer cells in the bone marrow of his left hip (estimated at 5%). Patients typically don't proceed to stem cell transplant until the bone marrow is clean. It is up to the transplant team at UCSF to make the final call as to whether we proceed to transplant or remain here and receive additional chemo. I don't know what I was expecting to hear from the doctors today. I was prepared and assuming William would receive additional chemo before proceeding. I think what caught me off guard was assuming one additional round would be needed and learning chemo cycles are administered in pairs and he would likely need two more rounds before reassessing his bone marrow.

I started the math:
2 rounds=6 weeks, minimum
1-2 weeks as a cushion for likely prolonged recovery
2+ weeks after that for likely scheduling and planning for transplant.

=some time in January for transplant. (We had hoped for November or December)
+ radiation after that

Today is day 21: the day he usually starts the next round. We're not starting yet. We have all these things spread out in front of us and we have no idea what happens next or when. That's why I cried today. We now sit and wait for the phone to ring to tell us what to do. If more chemo is the answer, do we start the next day or next week? What about the timing with Halloween, William's birthday. . . . Some things don't matter and birthdays and holidays can be celebrated any day we choose, but we can't even do that yet. All these numbers and calculations and we can't do anything about anything. We just wait and live today, preparing for tomorrow.

Tomorrow will be better after a good night's rest and partying it up with a 4 year old all day long!