Tuesday, October 14, 2014

Departure Date Set

Mike & Esther heard back from Seattle yesterday. The good news is that they didn't find any antibodies in Ava's blood, so nothing ruled out the potential cord blood matches they found. Hooray!

The medical team met to determine which cord blood donor was the best fit, and they decided on the 5/6 match whose donor also is of Asian descent. Praise God!

So, the Lee family will be flying out to Seattle next Tuesday, October 21. On "intake day," (Thursday), Ava will begin a series of tests over the next two weeks to determine baseline organ function and other things in preparation/evaluation for transplant. Such tests include (but aren't limited to): chest x-ray, EKG, pulmonary function tests... she will also get a bone marrow biopsy done somewhere in that time frame. Here is the general timeline: 

Oct. 21 - Lee family goes to Seattle
Oct. 23 - Ava's intake day...testing over next couple of weeks
Nov. 5/6 - Seattle medical team gives final recommendation on transplant. If they give the thumbs up...
Nov. 13 - start 3 days of very high dose chemo (inpatient); then one day off of chemo + 4 days of total body irradiation
Nov. 21 - transplant, then 3.5-4 weeks inpatient
Possible discharge around Christmas, followed by 2.5 months of follow-up in the clinic. The family may be able to return home as early as the end of Feb/early March (barring any setbacks).

With the exception of the Lee's departure date and Ava's intake day, these dates are only projected and therefore subject to change.

You may wonder why the medical team needs to give a final recommendation on transplant around Nov 5/6. This is their recommendation on whether or not Ava is ready for a transplant. They would reject her for transplant if she has any active infection at the time, or if there is active disease. Active disease would point to the need for more chemo to first eradicate the cancer before transplant.

There's a lot to do and yet it sometimes feels like we don't know what we're supposed to be doing to prepare. It feels like we've been trying to anticipate logistical needs for quite some time, yet not fully able to confirm what those needs will be. Housing is still a question mark right now. The 3BR house they were originally looking into didn't pan out as the house & interior furniture were all rather old so they couldn't take a risk on germs/mold, etc. They are on a waitlist to get a 1BR at the Ronald McDonald house next week, though for tonight alone there were 30 families on the waitlist! So, the 4 Lee's will likely stay with relatives in Kent upon arrival, and see what kind of housing they can find when they get there. It appears that some of their early appointments will be at the Seattle Cancer Care Center, with the others being at the Children's Hospital (which I understand are in different locations).

There are 2BR units available at the Ronald McDonald house specifically designed with transplant patients in mind, equipped with air filtration, minimal carpet, etc. However, these units are only for post-transplant patients, which means they would not be available to the Lee family right now.

For now, we could use some help from all you Seattle peeps! First, what is Seattle winter weather like? (If any one of you has lived in Chicago, any comparisons would be welcome). What type of winter clothing might be needed? Given that this past winter seemed unusual for everyone all around, any suggestions for this coming winter if it turns out to be similar?

Second, if anyone has other suggestions for housing near the hospital, please let us know. Thank you to those who have already done so! 

*Edited to add: The Lee's are looking for at least a 2BR furnished unit to accommodate their family + Esther's parents. Some relatives may come in to help, too. Hardwood floors are needed for cleanliness (e.g. no/minimal carpeting). They are required to live within a 10 minutes' drive from the hospital. The remainder of insurance they have left for lodging is about $8000 for their stay, which comes out to $2500/month for the months of Nov-Feb. If they end up staying later than that, they can probably manage/arrange something.

I'm sure I'll have more questions/requests, but that's it for now.

Thanks in advance for your input, suggestions, and of course - prayers. The Lee family is so thankful to have you walking alongside them.


Anonymous said...

Puntahachart family here in Bellevue, WA (13.4 miles from the hospital) for you all.... 425-442-4621... let us know how we can help.

Gwynneth said...

I just found this house for rent near the Children's Hospital. I think this place might really work for you. I use this website called padmapper.com to find it.


Gwynneth said...

I looked at the ad a little closer and saw another website for more info. In that posting it does say 12 months. But maybe it is possible if you ask for only 6 months they will let you. It may just cost more per month or a bigger deposit, etc.

Gwynneth said...


Anonymous said...

Patty, Al T. from MN forwarded me this blog. My family and I are in the Seattle area. I sent an e-mail to Esther's gmail address yesterday. Anything we can do at all while they're here, please do not hesitate to let us know. JW (the oldest of the brothers)

jaemom said...

I forgot you're out there! Thanks for the message. I'll be in touch.