Thank you for your prayers. Since Ava's last dose of G-CSF, her ANC has slowly increased on its own without any further doses needed. Praise God!
The doctors decided to keep Ava on cyclosporine instead of switching her to sirolimus. I learned that the primary reason they were considering the switch in the first place was because Ava was experiencing some hemolysis as a result of cyclosporine, where her red blood cells were being destroyed. The prospect of discontinuing other medications used to treat the side effects was a secondary perk of switching. However, there isn't much evidence of continuing hemolysis, so given that sirolimus would also decrease ANC, the doctors feel it best to keep Ava on the cyclosporine. Ava would only have a few more weeks of it, anyway, so she will soon be tapered off of it.
The lesion on Ava's mouth turned out not to be HSV -- not a cold sore. Praise God! Her cytomegalovirus (CMV) level is at zero, so these are both good signs that dormant viruses are not becoming active. However, Ava has a sort of 'pimple' or two on her body that are curious, one of which has been causing a good deal of pain and discomfort. You may recall that Ava was being treated for a skin infection when she was unexpectedly diagnosed with leukemia, so we pray that these bumps and irritations will not be anything serious.
As for Ava's adrenal glands, it can take quite a while for her to regain function, but we continue to pray for quick recovery. Until then, she will continue taking hydrocortisone three times a day with backup IV in the event of adrenal crisis.
What all of this means is that Ava is back on the path toward discharge home to Chicago! She will have a host of tests this coming week to make sure she is in a good position for discharge, which is still looking like mid-March. However, the potential delays previously seen no longer seem to be a factor, so we give praise and thanks to God for that!
This Sunday will be Day 100 post-transplant... it's hard to believe it will finally be here! We rejoice in God's faithfulness up to this milestone marker, remembering that most transplants cases that end in failure typically have complications that arise in the first 100 days. What an amazing milestone to celebrate! Thank You, Lord!
Surely you must know that you have played no small part in this journey. Thank you for your continued love, prayers and tangible support, whether near or far. We are by no means out of the woods, yet we recognize so many gifts to celebrate and give thanks for, including the gift of each one of you.
Ava's ANC was low again today, so she had to get another dose of G-CSF. Her low ANC also meant that she couldn't start the sirolimus as planned, since sirolimus is an immunosuppressant and would drive her ANC even lower. Depending on how long Ava's low ANC persists, this can also delay their return home to Chicago.
Low ANC also means Ava is more susceptible to infection. The appearance of a cold sore on her lips reveals that the HSV is active again, so they will discuss a treatment plan. The last reading of CMV (another virus) was zero, indicating that the virus was no longer active (therefore dormant), and we pray that this remains dormant.
Meanwhile, the adrenal test that was done to assess if Ava's adrenal function has been reactivated came back undetectable, meaning that her adrenal glands are not working right now. You may recall that long-term steroid treatment suppresses adrenal function, making the body think it doesn't need to produce the body's natural version of steroids. Now that Ava has been weaned off steroids, her adrenal glands need to kick in and start producing again. Since they are not right now, Ava will need to take hydrocortisone three times a day until they do. The concern here is that adrenal suppression can result in adrenal crisis, which is a life-threatening medical emergency. Typically any additional demands/stress on the body (e.g. infection) can trigger adrenal crisis. As a result, Mike and Esther have been trained on how to draw up and administer an injection in the event that Ava goes into adrenal crisis (similar to giving an Epi-pen for anaphylaxis). The doctor said Ava's adrenal test was extremely low, the lowest they've ever seen. It is likely that Ava will regain adrenal function at some point, though we don't know how long the adrenal suppression will persist.
It is unclear as to the cause of Ava's low ANC. The steroids and the antiviral for CMV that Ava was previously taking can falsely elevate levels, so the discontinuation of those meds can explain some of the decrease. It is also possible that Ava's body is fighting something. Admittedly, in the back of the mind is the possibility of cancer relapse, though the doctors aren't quick to suggest that at this point. Still, the reality is that there is no guarantee of outcome. Ava's been doing well for the most part up to this point, but we know this is no promise for the future. The scary thing is that people with cancer (especially kids) can decline so rapidly, it's hard to really prepare for what's ahead.
Mike and Esther's hearts are heavy for families they've come to know whose children are really struggling in their battle with cancer right now. They would appreciate any prayers lifted on behalf of these children and their families. In particular, they ask for prayers for sweet Allistaire. Allistaire is a 4 year old girl who was diagnosed with AML at 21 months of age. After having a transplant, she has since relapsed and returned to Seattle several months ago for a second transplant. But after chemo wiped out her ANC in preparation for transplant, she ended up in the ICU with a serious infection and no immune system to fight it. After another serious infection, Allistaire is now facing heart failure, another obstacle to transplant. If any of you are prompted to pray for Allistaire and her family, your prayers are appreciated. You can read more about Allistaire's story here.
For the Lee family, please pray:
For protection against infection
For return of Ava's adrenal function
For Ava's ANC levels to go back up
For no cancer!
For continued faith and peace despite an unknown future
To continue finding the joy that God weaves even alongside pain and suffering
"Hopefully I'll feel better tomorrow," she said. Then she squeezed my hand tight. And that's when I realized that her baby hands had become the hands of a little girl.
Ava has been battling cancer for 1/6 of her life now. When most kids wish for a sunny day to play outside or ice cream for dessert the next day, my kid's bedtime wish involves feeling better from physical ailments.
Her adrenal glands were found to be "profoundly insufficient" today after some testing. It was to be expected due to her high dose steroids but this amount of insufficiency was new even to the doctor. So now instead of an epi-pen we are supposed to carry around a shot of hydrocortisone.
I spent an extra long time staring at Ava tonight as she slept. I treasured her bushy eyebrows and fuzzy lip resulting from her anti-rejection medication. She is so sweet, so observant, so incredibly thoughtful, so beautiful inside and out. And cancer is so ugly, so broken, so horrific. How could such opposites coexist? It is a different kind of broken to see a child endure the wicked wrath of such a terrible disease.
Cancer has stolen most of her childhood but I pray and pray and pray that it would not take her chance at a future as well.
Ava is not the only one battling cancer. She has many friends who are struggling to stay afloat in this deep ocean of pain and despair that is cancer. Please remember them in your prayers and help us to raise awareness for better treatments, more funding, and, most importantly, a cure. #restorehope
One of Ava's cousins in Minnesota, Samantha, is hosting a bone marrow drive along with some peers through their high school's National Honors Society! While they are not old enough to donate marrow themselves, they want to make a difference in the lives of those impacted by blood cancers by hosting this drive, as they each have close friends or family battling such illnesses. For those in the Twin Cities area, here is the info: Date: Saturday, Feb 28th Time: 12:30pm-4:30pm Place: Wayzata Free Church 705 County Rd 101 Plymouth, MN 55447 Feel free to pass this info on to anyone in the area. For those on Facebook, there is also a Facebook page for the event. Financial donations to Be the Match can be made through the drive's fundraising page. Thanks!
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. Thanks!
There have been a lot of surprises encountered on the journey we set out on one year ago. I can not believe that in the month of the anniversary we received the worst news of our lives, we are celebrating unending joy at the report that Ava's little body does not show any evidence of disease. I have been waiting for the status of MRD negative for, what seems like, years now. Although we've only battled for one year, this disease had the potential of stealing away years of life, love, joy, and hope. Yet, I am sitting here in a beautiful apartment on Mercer Island with my newborn son in the next room and my girls and my husband nearby. I am celebrating "ValenTIME's Day," as Ava pronounces it, with a full heart and all my loves with me.
God, what unexpected joy in the midst of this weary trial.
But when I look back across the past months, although they were stained with tears, I am seeing how the presence of joy was always there. Sometimes the joy was blanketed in a quiet whisper from God, and, at other times, it presented as a huge virtual hug from a complete stranger through an email.
I recently stumbled upon a blog posting written by Pastor Peter Chin, an old acquaintance, about his own life journey as his wife battled cancer while pregnant with their third child. He wrote that "deep pain and deep joy can coexist." And then he beautifully summed up a truth that can be so easily overlooked especially in a season of unceasing suffering and fear. He writes, "This is life: blessing and suffering, joy and sadness, the mulberry and the wisteria. Learning to accept this comingling is to learn how to live fully. It is to find that you are in a painful place, but that small but precious blessings are still to be found, even in a wasteland."
There were a lot of things I anticipated from the Lord as I packed our bags to move to Seattle. I relied on Him for guidance, faith, healing, provision...but, joy? No, that wasn't anywhere on my list of priorities. But God is not bound by my priorities and expectations. He is our Father and I know firsthand that a father takes delight in the joy of his children.
What welcome wisdom this was for me to read. And the more I looked for it, the more I realized I had experienced this mystery countless times here in Seattle. How could I not ponder it more, allow it to wash over me and settle deep into the crevices of my heart so that I might sing in the midst of the unknowns we have yet to face?
We have been the recipients of countless blessings from the moment we landed in this state. Really, there are actually too many to count. The prayers, the cards, the emails, the gifts, the visits, the food, the new friends--these have all brought smiles of joy to our faces while we were in the hospital and beyond that time as well.
One such tremendous blessing was the generous hospitality of our hosts on Mercer Island. We haven't had the chance to mention them yet but through their gift of hospitality, Rob and Keri, gave us a place to call home during the very particular time of my pregnancy when my need to "nest" was in full drive. And what a home this is! We have been able to enjoy a VERY comfortable bed, the cool things that Mercer Island has to offer, and a great location where we are able to get to Ava's clinic appointments in record time. The hospital I delivered at was only a 10 minute drive away as well!
Another unexpected blessing was the chance to have Mike, selfishly all to ourselves, for the past few months. Through this time, I have witnessed what a tender, faithful, and loving father he is. He has taken on the majority of responsibility for Ava's care which means early mornings to give her medications and late nights to unhook her from her IV fluids and give even more medications. He has loved our family faithfully, without a moment of grumbling, and it has been a joy to see his expressions of love toward us.
And, there was last night when we went over to Rob and Keri's for dinner. Keri had planned a scavenger hunt for the girls that had them running all around the house looking for fun clues. One of the clues led them to the basement and as Ava struggled back upstairs, I saw her leaning heavily on one leg and pushing up on that leg as she hobbled up each stair.
The steroids have taken a toll on her, changing her petite frame into one that causes her great pain and discomfort. She had begun to lose interest in playing and instead spent countless hours trying to sleep away her time. She often told me how difficult this season was for her, how lonely she felt walking this road.
But that night, as her swollen body teetered on her stick thin legs, her face beamed with the most glorious smile to light up her face. My heart could almost burst at the juxtaposition of this child struggling from physical pain but experiencing so much incredible joy at being able to play with abandon for the first time in a long while. That night, Ava whispered that it was the most fun she remembered having. And I wept at the incredible grace we were given that in the middle of this great trial, she could experience joy.
As I sit and type, I see how an eternity could be spent praising God for His good works in our lives and those around us. But our deepest joy comes as a result of the searing pain that Jesus endured on the cross so that we might have direct access to God, and that by His death we would not know death. Our greatest joy is that this life, mixed with its sufferings and its glimpses of heaven, is a temporary one that will, one day, be exchanged for a permanent existence of joy with our Father.
That there is a fountain to refresh us in our trek through the desert, that there are squeals of laughter from my girls among the groans of pain, that there is newborn Jude cooing at cancer-ravaged Ava, that there is life in the face of death...that there is joy, endless joy. We lift up our hands to heaven and tilt our faces expectantly up to Him-the mysterious and magnificent One-who grants us joy in the midst of suffering.
"Boundless love, unending joy, this is my life, it’s what I know. I can’t believe that he selected me Jesus, My Lord, it’s you I owe." -Farrell and Farrell
*Pastor Peter Chin's book, Blindsided By God: Disappointment, Suffering, and The Untamable Goodness of God, was just released this month! I have only read some excerpts from the book but have been so blessed by his experience and his words.
I'm sorry I didn't get a chance to post results earlier today, but some great news: Ava is still MRD negative! Praise God for His goodness! We are very excited about that! Some more exciting news: Ava's IgE level was drawn and came back early. It's low: 27! This is also great news, as they will stick with the plan to give her a food challenge next week and see how she does. Just to give some perspective about her IgE level of 27:
people without allergies can have IgE levels around 120
Ava's level as a toddler: 19,000
Ava's level before diagnosis: 22,000
Ava's level pre-transplant: 800 (you may recall that because it was under 1000, they were able to give her a drug to further decrease her IgE before transplant in hopes of minimizing allergic reactions)
Day 80 post-transplant: 27
Ava is now on her daily taper of steroids. Meaning, every day her dose decreases a little. Prior to this, Ava had to stay on the same dose for a week before another decrease. So we are nearing the end of her steroid taper, which is a welcome sight! I believe her last day of steroids will be Feb 22nd. Correction: Ava did not have an adrenal test done today. That will be done on the 23rd, after she has discontinued steroids. On another note, yesterday's LP resulted in a spinal leak, where the puncture hole didn't close properly. As a result, Ava's been experiencing bad spinal headaches which are worse when she's upright. Please pray that the hole would close completely and that the pain would fully resolve. Please continue praying for stamina for Mike and Esther, and God's gift of rest and refreshing for their souls and bodies. Thank you!
Today (Tue), she will receive more platelets in preparation for her last lumbar puncture chemo tomorrow. Ava will also have a neurological exam today.
bone marrow biopsy
skin biopsy (which is routine because GVHD is common on the skin).
adrenal gland test - I imagine this is to assess if Ava's adrenal glands are beginning to work again. Long-term steroids suppress their activity, which is why a slow taper off steroids is important. The taper allows the body to slowly trigger adrenal gland activity again.
Ava will have an IgE level drawn next week (you may recall that IgE is associated with our body's allergic response)
Depending on the IgE results (i.e. if they are low enough), they will consider giving Ava a food challenge! Meaning... they will have Ava eat something she's normally allergic to and see how she responds. Wheat may be the first one tested. That would really be something if Ava can have wheat!
So as you can see, there are some important steps coming up! Of course the bone marrow biopsy is important in letting us know if there's any detectable cancer left. It's also important for Ava's adrenal glands to begin working again so she can continue on her steroid taper. We continue praying for no GI flare ups in the process. And an allergen challenge?! It's crazy to even consider the possibility that Ava could eat wheat (or anything else she's allergic to) - what a glorious thought! Meanwhile, Jude no longer needs to be under bili lights, as his jaundice is gone now. Hooray! I haven't had a lot of contact with the Lee family since Jude's discharge. I imagine they are snatching times to nap and rest, wishing they had more time to nap and rest, all while enjoying one another's company and the precious moments of each day. I'm not sure how Gwen's doing since her vomiting episodes last week, but I'll let you know when I hear anything. (I'm going on the "no news is good news" approach). Mike's parents will be in town until this Saturday. Perhaps next week would be a good time to start a meal schedule for any local people who are willing to serve the Lees in this way. Thanks for your prayers and love!
Esther and Jude seem to be rockin' life, so they were discharged today! Ava received a platelet infusion this morning and was able to go pick up her new baby brother afterwards.
Another blessing is the fact that Ava has had very few platelet transfusions since transplant. In fact, despite the doctors preparing them for frequent transfusions, today was only Ava's second transfusion since transplant! She did well with just Benadryl as premedication -- what a wonderful thing considering the degree of nervous anxiety that formerly surrounded each transfusion she had in the past, as well as other medications given prophylactically.
Ava was negative for CMV a couple days ago. After confirming this with another level check, her CMV med can be reduced by half.
Ava continues on her steroid taper and her stomach seems to be doing well.
Gwen unexpectedly vomited twice after everyone came home. She is staying with grandparents who are caring for her. Please pray for her health/recovery, and everyone else to remain healthy: Ava, Jude, Esther, Mike, grandparents.
We are glad that Ava is tolerating her steroid taper well. Please continue praying for successful weaning. In the meantime, her body is still reeling from the effects of long-term steroids. Thanks for praying for quick and full restoration.
Hopefully the whole Lee family can be under the same roof soon and settle into life with a baby boy. Thanks for your prayers!
He's here! Jude David Lee was born earlier this morning, weighing in at 7lbs and 8 oz. Thankfully, Mike was able to catch a few hours of sleep overnight before Jude was delivered, as he had to leave early this morning to take Ava to a full day's worth of clinic appts. What a whirlwind, but we rejoice in Jude's safe arrival. Thank you for your prayers! We continue to pray for health and rest for the whole family. Praise God!
Esther's water broke! They just got to the hospital. Esther is positive for group B strep so she will be started on prophylactic antibiotics. She is experiencing irregular contractions at this point, so it's unclear whether or not they will progress to more regular ones. It's possible that her contractions will remain irregular, as she has experienced before. We will see. In the meantime, please pray for:
smooth and healthy delivery for baby & mom; pray that Esther's contractions would develop normally and regularly and no induction or intervention later would be necessary.
Mike, as he will be doing a little back and forth between taking care of Ava's infusion and being with Esther at the hospital
Mike's mom, who is taking care of the girls, and for Ava & Gwen as well.
Today is World Cancer Day. Thank you friends and family for helping us through such a difficult journey and for raising awareness for all the families battling these devastating illnesses. We hope for a future without cancer!! #worldcancerday#teambrighterdays