Sunday, February 22, 2015

Winding Down

It's hard to believe that Ava's return to Chicago is on the horizon! There are a number of things to share:

Ava had some allergy skin testing done this week, which revealed no soy or wheat allergy! This is great news! Milk and egg allergies still remain, though it is unclear if this is a result of some of Ava's remaining cells/allergies, or if the donor happened to have those allergies as well. It was decided to wait until Ava's annual follow-up to do any food challenge.

In hindsight, the allergist proposed that Ava's severe GVHD in her gut may play an important role in getting rid of any remaining sensitivities to allergens. Wouldn't that be something if that was the case? It reminds me that we really do have such limited understanding in this life. God's ways are not our ways, our thoughts are not His thoughts. When we can't conceive the things that God is doing, He asks us to trust His heart. May we continue to do so wholeheartedly, even when things don't look as promising.

Ava had her last dose of steroids yesterday!!! This is VERY good news, as the long-term steroids have really taken a toll. Please continue to pray that the GVHD would be under control. So far, she hasn't had any flare-ups. Praise God!

The original return date was possibly March 1st, but we are now looking at mid-March for the Lee family to return home. The reason is because they are switching one of Ava's transplant medications and want to make sure the transition goes smoothly. The cyclosporine that Ava's been taking has been causing a number of side effects, resulting in her taking three additional medications (including an IV) just to treat the side effects. So, the aim is to switch her from cyclosporine to sirolimus, and hopefully discontinue the other three medications, simplifying her drug regimen. However, because switching these drugs may cause her stomach GVHD to return, they want to make sure that Ava tolerates the switch without further incident.

Meanwhile, Ava is slowly regaining her strength and energy. It is difficult to convey just how traumatic this stretch of steroids has been for Ava, so it is refreshing to see Ava become more of herself again. The Lees were able to enjoy a longer walk yesterday as a family of five - amid the other activities of feeding, diaper changing, bathing, administering medications/IV and enjoying God's blessings of each day.

Ava's ANC has been dropping lately (down to 620), so she is at the hospital right now getting a drug (G-CSF) to boost her neutrophil count. We're not sure why her counts have been declining, but thanks for your continued prayers for full health.

As the Lees will remain in Seattle for the next few weeks, they would be blessed by any meals that local friends could provide. Indeed, they have felt loved on by the unsolicited meals and other tangible help that have already been provided throughout their stay. Know that you all are greatly appreciated! For those who are able and interested in providing meals for the Lees, please sign up here. I will also put the link for meal sign-up on the Seattle Info page. Meals can be brought any day starting tomorrow through mid-March, but that's just to give people the greatest flexibility. There is of course no expectation for daily meals to be provided. Thank you!

One last note:
As the Lees anticipate returning to Chicago in a few weeks, please send any mail to their home in Illinois. This will help minimize the number of things they need to bring back. Please see the Seattle Info page for their home address.



me said...

Is there a way for someone who doesn't live in Seattle to provide a meal or gift card for them? I'm in Chicago and wouldn't be able to deliver a meal but I would love to provide a meal for the family. Thanks.

jaemom said...

Thanks for asking! An option is to order from a nearby restaurant that delivers? You can email me at naisula (at) gmail (dot) com for more info. Thanks!