August 27th - It's all coming together

Another day in Boston - last chemo of Cycle #2 - one more check mark on the path to CURE.

So much is happening now, moving toward the completion of chemo and the stem cell (marrow) transplant.

Ryan will have his Cycle #2 bone marrow biopsy next week, then 4 more weeks to complete Cycle #3, then CNS (intrathecal chemo via spinal taps), then transplant.

We meet with the transplant physician - Dr. Corey Cutler - on Friday, September 7th. 

Sean has been excluded, so Meghan is our donor and a "perfect match".  She will need to come to Boston for a physical evaluation in late September or early October, then back on October 14th for the injections and harvesting of the stem cells.

The Transplant is officially scheduled for October 18th, with Ryan being admitted on the 12th for prep - including radiation to all his marrow over several days. 

While we are so happy to have received the blessings that have put him into remission, there is serious risk in the transplant process:  he will have ZERO immunity for quite a while.  We've read the packet we were given outlining many of the details of what to expect. 

We'll need to remain in Boston for 30 day days after discharge in a designated place that meets the standards for cleanliness established by Dana Farber.  Then almost no contact with people outside the family for months.

Vigorous house cleaning - I've already arranged to have the ducting cleaned, the well water tested and am doing the deep cleaning that's long overdue!!

No eating out  for at least 100 days.  Special dietary care to minimize risk of infection, fixing all our food at home.  No fresh veggies, only thick-skinned fruits (citrus and some melons), no deli meat, no bakery bread, no uncooked herbs, etc.  So taking some tips from the blog from the girl in Glens Falls, we'll be "foodies" and have some fun trying new things that meet the criteria. 

It's reassuring to see all those who've had stem cell transplants in the waiting room - they're the ones wearing masks and gloves, which Ryan will have to do whenever he's outside the house.  There are lots of them.  While some look quite fragile, we've got Ryan's age on our side, and the reassurance that other people have gone down this road before us and are coming out the other end successfully.

Ryan will be starting a couple of BYU classes this fall - Spanish literature and World history.  The online courses give him 14 months to complete.  So he'll have something to occupy his mind and his time, but that he can set aside on days when it's too much.  Then 3 or 4 courses in January, and he will have only lost a little ground in his education.  Plus, by taking the on-line classes, his loans won't come due. 

Meanwhile, life goes on.  The girls are preparing for school.  I will be in Boston on their first day for Ryans' marrow biopsy, which makes me sad.  I've never been particularly emotional about the first day of school, but I think the kids need a little extra emotional support when they return home from that day of stepping bravely into a new phase.  I also think it's important to establish those daily routines that get lunch boxes unpacked before they become biology experiments, getting important papers to mom, homework done, etc.  And - let's face it - this is not Tim's forte!!! 

We've established that Tim will be head cook while I'm gone (he gets home earlier than Sophia, he's a good cook, and he can't complain about the food if he cooks it!!), while Sophia can be the chauffeur, getting the girls to dance, TaeKwonDo and church activities.  And I'll still be the task master by phone, ensuring that homework gets done and giving chore assignments.

It looks like after the transplant I'll stay in Boston Monday through Thursday and Sophia will go on Friday evening after work through Sunday.  We're looking into the MegaBus for transportation, since parking is really pricey there. 

We celebrated Kaia's 10th birthday on Sunday.  She's really growing up.  She chose a remote control helicopter for her birthday present.  Tim and I were a little worried that it's survival was probably more easily counted in hours than days.  So we jumped at RadioShack's offer of replacement for any breakage for 12 months for just $7.  Unfortunately, the warranty doesn't cover retrieving it from the second story roof where it landed Sunday evening - 24 hours after purchase.  And an opportunity to discuss the risks of accepting dares from others......

I'm a little worried about Kaia emotionally - aside from the helicopter.  Her "tick" or stuttering is much worse than it's ever been.  Part of it may be that my expectations have been high this summer, but she seems delighted to be included in cooking and often delights in her newly-cleaned room.  I think it's more the insecurity or stress of having Ryan sick, not to mention adjusting to having two more people in the house and another adult telling her what to do.  In spite of her tough exterior, she's always been emotionally fragile.  It's a real challenge to meet everyone's emotional needs.

MeiLin is looking forward to steeping up to middle school, but a little worried about the changes and seems less confident in herself.  I think she'll be fine once she starts and gets the hang of things.  But she's a worrier. 

As you can tell by the time signature on this, it's another insomnia night!!  But it just started pouring rain - I love storms and rain, so I ought to be able to sleep well.  Hoping the rain will wash the helicopter off the roof.  I'm sure it will be ruined, but at least we'll have something to take in for our $7 replacement contract!!!

Thanks again for all the prayers, love and support.  I'd like to express our love to all of you.  We pray that you may all be uplifted as you deal with whatever life has sent you.
---Barb