Ava's story was featured on Seattle's KCTS channel 9 highlighting Dr. Colleen Delaney's outstanding work with cord blood. She is the best and we are indebted to her for her passion and dedication to finding a cure! Make sure to click on Ava's picture to see the video portion of the interview!
http://kcts9.org/programs/cancer-emperor-of-all-maladies/giving-life-twice
Friday, March 27, 2015
Sunday, March 22, 2015
HOME
We are finally home after 5 months in Seattle. It is surreal. I already see the effect that our home is having on the girls. They are thriving and I'm reminded of how essential it is to have a home - a safe haven of rest and restoration. As I think of such things, something deep in me rejoices that we are only sojourners on earth waiting for that wondrous day when we really get to go HOME.
Your prayers were our lifelines. If saying "thank you" was enough, we'd want to paint it in the sky so the whole world would see. But we know that no amount of thanks could ever cover the amount of love that was poured into us. Your support was immeasurable and we are filled with wonder at how love and prayers pulled us through the darkest night.
"Even the darkest night will end, and the sun will rise." -Victor Hugo, Les Miserables
Sunday, March 15, 2015
Heartfelt Thanks
I can not believe our time in Seattle is coming to an end. We came with bruised up hearts but now we are leaving with them filled to the brim with memories of your graciousness and God's faithfulness.
You have poured into our lives so generously and we will never forget your kindness. Some practical ways you have served us were through meals, cards, gifts for the girls, and a kind listening ear among many other things. Due to our timeline in getting back to Chicago, we probably won't be able to spend time saying goodbye like we had envisioned but we'd like to return anything that we have borrowed. Unfortunately, we were not good about keeping track of who we borrowed what from. If by chance, you have lent us a baby swing, boppy pillows, baby bath tub, toys (or anything else I am forgetting) and would like them returned, please email me at estherboralee@gmail.com. Otherwise, we will be donating to Eastside Baby Corner, an organization that helps provide basic needs for children from birth through age 12. More information can be found on their website at http://www.babycorner.org/how-we-help-kids/.
Thank you again for your love. You took our pain and made it your own. And out of that love our hope took flight.
Speaking of flights, our tickets have been booked for this coming Thursday! Do I dare say it? It looks like we are going home!! We will have to bust out our winter wear because we are reasonable and know that 40 degrees is technically not "spring like" weather. Please, Chicago family, I know you have been having sub zero degree temps this winter but that does not mean you should be wearing shorts when there is still snow frozen to the sidewalks.
Maybe I have just gone soft. Time to get this girl back home to the tough streets of Chicago! Yahoo!
You have poured into our lives so generously and we will never forget your kindness. Some practical ways you have served us were through meals, cards, gifts for the girls, and a kind listening ear among many other things. Due to our timeline in getting back to Chicago, we probably won't be able to spend time saying goodbye like we had envisioned but we'd like to return anything that we have borrowed. Unfortunately, we were not good about keeping track of who we borrowed what from. If by chance, you have lent us a baby swing, boppy pillows, baby bath tub, toys (or anything else I am forgetting) and would like them returned, please email me at estherboralee@gmail.com. Otherwise, we will be donating to Eastside Baby Corner, an organization that helps provide basic needs for children from birth through age 12. More information can be found on their website at http://www.babycorner.org/how-we-help-kids/.
Thank you again for your love. You took our pain and made it your own. And out of that love our hope took flight.
Speaking of flights, our tickets have been booked for this coming Thursday! Do I dare say it? It looks like we are going home!! We will have to bust out our winter wear because we are reasonable and know that 40 degrees is technically not "spring like" weather. Please, Chicago family, I know you have been having sub zero degree temps this winter but that does not mean you should be wearing shorts when there is still snow frozen to the sidewalks.
Maybe I have just gone soft. Time to get this girl back home to the tough streets of Chicago! Yahoo!
Saturday, March 14, 2015
Birthday Reflection
(From Esther):
This was how I spent my birthday and it was beautiful.
Thank you so much for your birthday wishes! They really mean so much to me because I see the friendships behind the wishes. And, believe me, if there was ever a time I needed you it was this year.
This has been the most challenging year of my life. Ava was diagnosed 2 weeks before my birthday. So how fitting it was that this year's birthday was spent discussing how well Ava's transplant went at our discharge conference! It was such an emotional meeting realizing we were on the other side of this terrifying procedure.
Our journey is not over yet and who knows how our story will pan out from here on out. There are a lot of unknowns, but there is one thing we do know. Our stories begin and end hedged in by God's foresight and beautiful plan for our lives. And no matter what twists and turns we encounter along our way, we know our stories ultimately will end happily as we rest in the Lord.
Not gonna lie-I probably hated more moments of life this year than all the years combined. But I walk forward and into the next year of life with a deeper understanding of God's kindness, His faithfulness, and a better ability to get down into the trenches with those who are suffering. May God use these things to further His glory and may He give me a flippin' break from learning tough lessons for the next 12 months. Just kidding. Not really.
#youareablessingtome
This was how I spent my birthday and it was beautiful.
Thank you so much for your birthday wishes! They really mean so much to me because I see the friendships behind the wishes. And, believe me, if there was ever a time I needed you it was this year.
This has been the most challenging year of my life. Ava was diagnosed 2 weeks before my birthday. So how fitting it was that this year's birthday was spent discussing how well Ava's transplant went at our discharge conference! It was such an emotional meeting realizing we were on the other side of this terrifying procedure.
Our journey is not over yet and who knows how our story will pan out from here on out. There are a lot of unknowns, but there is one thing we do know. Our stories begin and end hedged in by God's foresight and beautiful plan for our lives. And no matter what twists and turns we encounter along our way, we know our stories ultimately will end happily as we rest in the Lord.
Not gonna lie-I probably hated more moments of life this year than all the years combined. But I walk forward and into the next year of life with a deeper understanding of God's kindness, His faithfulness, and a better ability to get down into the trenches with those who are suffering. May God use these things to further His glory and may He give me a flippin' break from learning tough lessons for the next 12 months. Just kidding. Not really.
#youareablessingtome
Friday, March 13, 2015
Wrapping Up
The great news is that Ava did not have an endoscopy yesterday! Ava is still in a state of adrenal suppression, and symptoms of that can mimic GVHD. Since Ava seems to be doing pretty well and her symptoms haven't been severe or constant, the doctors are willing to just watch and see how she continues to do. Ava's last discharge clinic is next Wednesday, and assuming all goes well, the Lees are cleared to come back home after that. So they may be home by the end of next week!
Incidentally, today (Friday the 13th) is Esther's birthday! There are many things to celebrate today, including all of you. It is hard to believe that this chapter in their transplant journey is coming to a close. Thank you so much for your faithful intercession and friendship.
Wednesday, March 11, 2015
Home or Not?
One of the many difficulties of cancer is uncertainty, and we see that again with Ava's recent stomach pains. The plan is for the family to return home to Chicago by the end of next week hopefully, but that depends on how Ava is doing. There are two many factors affecting her discharge home:
1. GVHD/stomach pains - Ava may have an endoscopy tomorrow to take a look at her gut. Admittedly, there is reluctance about having this done. If they see evidence of GVHD, they will treat her for that. That means restarting steroids for however long, and needing to slowly taper off again. Because Ava had pretty severe GVHD, it wouldn't be surprising for her to have evidence of GVHD even if this isn't the cause of her current pain, but she would still get started on steroids to treat it.
2. Cyclosporine - I think Ava has less than two weeks left on cyclosporine. However, because some of her blood counts were down, she may be experiencing more hemolysis (destruction of red blood cells) resulting from cyclosporine. She got a red blood cell transfusion yesterday. If she is experiencing hemolysis, they will switch her from cyclosporine to sirolimus instead. Ava would then need to be monitored to make sure the transition goes smoothly, which will also delay her return home.
It would be pretty disappointing if Ava had to start on steroids again. The steroid itself is hard to take long-term, not to mention all the other things it affects being an immunosuppressant. Ava's viral levels would need to be monitored, antivirals started, and other medications given to treat the side effects of the steroids. The steroids really affected Ava's mood as well. It's been so refreshing for Mike & Esther to see Ava become much more herself again now that she's been off steroids, talking and playing. No one is eager to change that.
Certainly no one wants Ava to be discharged home prematurely, but everyone is eager to return home together! I understand that if Ava needs to stay longer, Mike will come home with Gwen first, and Esther will stay behind with Jude and Ava.
As always, thank you for your faithful prayers for the Lee family!
1. GVHD/stomach pains - Ava may have an endoscopy tomorrow to take a look at her gut. Admittedly, there is reluctance about having this done. If they see evidence of GVHD, they will treat her for that. That means restarting steroids for however long, and needing to slowly taper off again. Because Ava had pretty severe GVHD, it wouldn't be surprising for her to have evidence of GVHD even if this isn't the cause of her current pain, but she would still get started on steroids to treat it.
2. Cyclosporine - I think Ava has less than two weeks left on cyclosporine. However, because some of her blood counts were down, she may be experiencing more hemolysis (destruction of red blood cells) resulting from cyclosporine. She got a red blood cell transfusion yesterday. If she is experiencing hemolysis, they will switch her from cyclosporine to sirolimus instead. Ava would then need to be monitored to make sure the transition goes smoothly, which will also delay her return home.
It would be pretty disappointing if Ava had to start on steroids again. The steroid itself is hard to take long-term, not to mention all the other things it affects being an immunosuppressant. Ava's viral levels would need to be monitored, antivirals started, and other medications given to treat the side effects of the steroids. The steroids really affected Ava's mood as well. It's been so refreshing for Mike & Esther to see Ava become much more herself again now that she's been off steroids, talking and playing. No one is eager to change that.
Certainly no one wants Ava to be discharged home prematurely, but everyone is eager to return home together! I understand that if Ava needs to stay longer, Mike will come home with Gwen first, and Esther will stay behind with Jude and Ava.
As always, thank you for your faithful prayers for the Lee family!
Updates from Facebook
This girl found me in a time of weakness. She ran out and returned with a box of Kleenex and began to wipe my face.
Gwen: Mama, when you cry, I will help you.
Thankful for this goofy girl who brings us unfettered joy in the moments of darkness. ...#mygirlgwen
It doesn't matter that Seattle has its cloudy days. You bring the sun with you wherever you go. #mygirlgwen #mysunshine
Happy one month, Jude Baby! #onemonth
Sunday, March 8, 2015
Stomach pains
The Lees had a discharge conference a couple of days ago. Part of the discussion involved the Lees returning home within the next two weeks, barring any setbacks.
A recent concern is that Ava has been experiencing some decent stomach pain. The doctors suggested that this could be a side effect of the antibiotic she was taking for the skin lesion she had on her leg. Thankfully, her skin has improved on the antibiotics. However, since she's had these antibiotics several times before without issue, there's also concern that her pain could mean the return of GVHD (graft vs host) in which case steroids may need to be started again and her return date pushed back. (Please, no steroids again! Or delay in return...) Ava completed her course of antibiotics a couple of days ago, so we will see if her symptoms persist.
Thank you for your prayers for Ava's continued healing and the Lee family's safe return from Seattle.
A recent concern is that Ava has been experiencing some decent stomach pain. The doctors suggested that this could be a side effect of the antibiotic she was taking for the skin lesion she had on her leg. Thankfully, her skin has improved on the antibiotics. However, since she's had these antibiotics several times before without issue, there's also concern that her pain could mean the return of GVHD (graft vs host) in which case steroids may need to be started again and her return date pushed back. (Please, no steroids again! Or delay in return...) Ava completed her course of antibiotics a couple of days ago, so we will see if her symptoms persist.
Thank you for your prayers for Ava's continued healing and the Lee family's safe return from Seattle.
Sunday, March 1, 2015
100 Days
It's common in Asian culture to celebrate the 100th day after birth of a newborn. Similarly, we celebrate the 100th day of Ava's life post-transplant!
(From Esther):
Happy 100 days post transplant to Ava! She forged ahead with grace and beauty although the journey wasn't always kind to her. Wishing my girl and countless other precious children the gift of experiencing life to the fullest and knowing God on a more intimate level because of the depths of suffering they have endured.
#100daysofnewlife #moreprayers #teamavabright
(From Esther):
Happy 100 days post transplant to Ava! She forged ahead with grace and beauty although the journey wasn't always kind to her. Wishing my girl and countless other precious children the gift of experiencing life to the fullest and knowing God on a more intimate level because of the depths of suffering they have endured.
#100daysofnewlife #moreprayers #teamavabright
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