Sorry I didn't get a chance to post earlier, but we are still waiting for the results and haven't received any word yet.
It's possible this is a good sign; as in the past, if there wasn't "enough" disease to detect, Lurie's had to send it out to another lab for processing. We don't know if this is actually the case, however.
We will update you as soon as we hear! Thanks for all of your prayers!
Thursday, June 19, 2014
Monday, June 16, 2014
Biopsy on Wednesday
Ava is scheduled for her bone marrow biopsy this Wednesday. Esther posted the following on her Facebook page:
ava has been feeling the effects of chemo pretty hard for this round. she wakes up feeling unwell and nauseous. her gums are swollen and she has begun to get mouth sores. we are ready to be done but it looks like we still have quite a long road ahead.
her biopsy is scheduled for this wednesday so, if you remember, please pray for ava, that she would be MRD negative with ZERO detectable cancer cells and that the leukemia would never return in any form in the future. we know that life is busy so any prayers, whenever you remember, would mean the world to us. God is able!
Thank you for your intercession!
ava has been feeling the effects of chemo pretty hard for this round. she wakes up feeling unwell and nauseous. her gums are swollen and she has begun to get mouth sores. we are ready to be done but it looks like we still have quite a long road ahead.
her biopsy is scheduled for this wednesday so, if you remember, please pray for ava, that she would be MRD negative with ZERO detectable cancer cells and that the leukemia would never return in any form in the future. we know that life is busy so any prayers, whenever you remember, would mean the world to us. God is able!
Thank you for your intercession!
Meal Train
I added some more dates to the meal train. The Lees have not requested this, but I think they could use the help. It's been difficult for them to think about feeding themselves properly. Many of you have already helped out with meals in the past; thank you! No pressure or obligation, just wanted to throw some dates out there for anyone who is interested and able to support them this way. Let me know if you have any problems with the sign-up.
Remaining in prayer with you all!
Remaining in prayer with you all!
Sunday, June 15, 2014
Broken Hallelujah
I have written and re-written this post too many times now. There are so many things I want to say to help you understand where we are now, to give you a glimpse into my heart, but I am realizing that it is too painful. I am so sorry.
I raised her with love. I nursed her with care. I covered her with hugs and kisses. She loved me with abandon. She grew my faith. She gave me a purpose.
Today, we ask for prayers. Our Ava can't die because then I fear all of our hearts will stop beating too. Please join with me in praying that Ava would be 100% MRD negative by next week's bone marrow biopsy.
I know many of you have prayed with me in fervency and with tears. You have showered us with blessings in every form. You have reminded us of your presence and we have not lacked in any good thing. We ask you, with humility, once again to storm heaven on behalf of Ava.
Patty covered all the medical side of things really well but to recap, Ava is allergic to one of her chemo drugs. We tried it in two different forms and now have run out of options for this drug. Yet, we have to reach MRD negative without its help by next week. In patients with ALL leukemia, any amount of cancer cells greatly impacts the prognosis of a bone marrow transplant. If Ava reaches MRD negative by the grace of God, we will continue with maintenance therapy for the next two years. This would be the most ideal situation. If not, she will be moved to AML therapy in hopes that we can get her MRD even lower. At that point, she may go to transplant despite the risks because that may be the only option.
I don't know what to say. I don't know what to think. We are holding her close and loving the heck out of her. We are cherishing the days. We are smiling a lot and laughing a bunch. We are weeping at night and praying our hearts out. And we are asking for more and more prayers from our friends and family.
We are stumbling around determined to praise God in all circumstances, even if it's just one measly broken hallelujah.
I raised her with love. I nursed her with care. I covered her with hugs and kisses. She loved me with abandon. She grew my faith. She gave me a purpose.
Today, we ask for prayers. Our Ava can't die because then I fear all of our hearts will stop beating too. Please join with me in praying that Ava would be 100% MRD negative by next week's bone marrow biopsy.
I know many of you have prayed with me in fervency and with tears. You have showered us with blessings in every form. You have reminded us of your presence and we have not lacked in any good thing. We ask you, with humility, once again to storm heaven on behalf of Ava.
Patty covered all the medical side of things really well but to recap, Ava is allergic to one of her chemo drugs. We tried it in two different forms and now have run out of options for this drug. Yet, we have to reach MRD negative without its help by next week. In patients with ALL leukemia, any amount of cancer cells greatly impacts the prognosis of a bone marrow transplant. If Ava reaches MRD negative by the grace of God, we will continue with maintenance therapy for the next two years. This would be the most ideal situation. If not, she will be moved to AML therapy in hopes that we can get her MRD even lower. At that point, she may go to transplant despite the risks because that may be the only option.
I don't know what to say. I don't know what to think. We are holding her close and loving the heck out of her. We are cherishing the days. We are smiling a lot and laughing a bunch. We are weeping at night and praying our hearts out. And we are asking for more and more prayers from our friends and family.
We are stumbling around determined to praise God in all circumstances, even if it's just one measly broken hallelujah.
Friday, June 13, 2014
Home
I just got a brief update that Ava is home (came home yesterday) and is doing well. I will update you when I hear anything more.
Thank you so much for your prayers, and for being an amazing support group for the Lee family.
Thank you so much for your prayers, and for being an amazing support group for the Lee family.
Thursday, June 12, 2014
Reality Check
Thank you again for your continued prayers, messages and love. It's been a tough day.
Mike & Esther had a sobering talk with Ava's doctor today who reiterated the seriousness of Ava's condition. Of course they know it's serious, yet it's hard not have been lulled into a fake sense of "normalcy" because Ava seems to be doing so well on other levels, comparatively. The conversation was a sobering reminder that this leukemia battle is real and fierce. It isn't ideal that Ava reacted to the Erwinia, meaning she isn't getting the full chemotherapy regimen. While they could try desensitizing her to the drug, the risks seem to outweigh the benefits, as she may have an even worse anaphylaxis than before.
The doctor conveyed how important it is that Ava's next bone marrow biopsy show her to be "MRD negative" -- if she isn't, her all around prognosis goes down and this would be considered a failed treatment. The aim is not merely to get her numbers as low as possible, but to get her to MRD negative: remission. They are seeing that in ALL (vs. AML) patients, any presence of MRD significantly decreases the chance for successful BMT/recovery; Ava needs to be MRD negative for even a chance for successful BMT.
With that said, they are not leaning toward BMT for Ava at this point. Remember that BMT comes with its own set of risks and hurdles. If Ava is MRD negative, the plan is to stay the course and have her complete this two-year phase of chemotherapy. If she has residual disease, they'll likely switch her back to AML treatment which is the inpatient and more intense treatment.
To add to this, Mike went home earlier tonight to be with Gwen, as she had been struggling physically recently with cough/runny nose, progressing to all out crying from her stomach hurting. She eventually fell asleep late in the evening, but had some labored breathing so Mike brought her into the ER. Gwen has since been discharged with the thought that she was having an asthma attack, but Mike & Esther can't shake the nagging concern that Gwen's food allergies may be the source. It's been an exhausting couple days.
Please pray for:
1) Ava's complete healing; MRD negative (permanently!)
2) Gwen and her allergies - may God bring revelation and insight and healing to Gwen as well
3) Mike & Esther, for overall strength, perseverance and REST all at the same time.
4) Anything else you have on your heart to pray for.
Thank you.
p.s. I will likely get the meal train up again soon. I will let you know when I get an idea of helpful dates/frequency.
Mike & Esther had a sobering talk with Ava's doctor today who reiterated the seriousness of Ava's condition. Of course they know it's serious, yet it's hard not have been lulled into a fake sense of "normalcy" because Ava seems to be doing so well on other levels, comparatively. The conversation was a sobering reminder that this leukemia battle is real and fierce. It isn't ideal that Ava reacted to the Erwinia, meaning she isn't getting the full chemotherapy regimen. While they could try desensitizing her to the drug, the risks seem to outweigh the benefits, as she may have an even worse anaphylaxis than before.
The doctor conveyed how important it is that Ava's next bone marrow biopsy show her to be "MRD negative" -- if she isn't, her all around prognosis goes down and this would be considered a failed treatment. The aim is not merely to get her numbers as low as possible, but to get her to MRD negative: remission. They are seeing that in ALL (vs. AML) patients, any presence of MRD significantly decreases the chance for successful BMT/recovery; Ava needs to be MRD negative for even a chance for successful BMT.
With that said, they are not leaning toward BMT for Ava at this point. Remember that BMT comes with its own set of risks and hurdles. If Ava is MRD negative, the plan is to stay the course and have her complete this two-year phase of chemotherapy. If she has residual disease, they'll likely switch her back to AML treatment which is the inpatient and more intense treatment.
To add to this, Mike went home earlier tonight to be with Gwen, as she had been struggling physically recently with cough/runny nose, progressing to all out crying from her stomach hurting. She eventually fell asleep late in the evening, but had some labored breathing so Mike brought her into the ER. Gwen has since been discharged with the thought that she was having an asthma attack, but Mike & Esther can't shake the nagging concern that Gwen's food allergies may be the source. It's been an exhausting couple days.
Please pray for:
1) Ava's complete healing; MRD negative (permanently!)
2) Gwen and her allergies - may God bring revelation and insight and healing to Gwen as well
3) Mike & Esther, for overall strength, perseverance and REST all at the same time.
4) Anything else you have on your heart to pray for.
Thank you.
p.s. I will likely get the meal train up again soon. I will let you know when I get an idea of helpful dates/frequency.
Wednesday, June 11, 2014
ER for Fever - Update
A few hours ago, Ava went to the ER for neutropenic fever. Not sure what this will mean for her chemo scheduled for later today (Wednesday).
She is getting antibiotics and platelets, as her platelets are only 5.
Thank you for praying for the resolution of fever & neutropenia, and for Ava to still be able to get chemo this week (in addition to buoyed spirits and rest all around!)
Update: Ava's platelet transfusion went well (thank You, Lord!) She's also getting a blood transfusion today and will get chemo tomorrow.
She is getting antibiotics and platelets, as her platelets are only 5.
Thank you for praying for the resolution of fever & neutropenia, and for Ava to still be able to get chemo this week (in addition to buoyed spirits and rest all around!)
Update: Ava's platelet transfusion went well (thank You, Lord!) She's also getting a blood transfusion today and will get chemo tomorrow.
Tuesday, June 10, 2014
Chemo on Wednesday
Ava is graduating kindergarten today! As a result, her chemo is rescheduled for tomorrow.
I believe she may have a bone marrow biopsy next week to see where she's at. Please continue praying that she will be MRD negative by then. If she is not, she will probably complete this treatment anyway, in order to get in her in the best possible position for BMT.
Please pray for both Ava and Gwen. Ava has been experiencing knee pain that keeps her up (or wakes her up), so not only is she in pain, but she's not getting enough sleep. It is unclear if Ava's knee pain is the leukemia or if it is something else. Gwen's allergies have also been acting up (exposure to food allergies somehow), which means she also has been up at night scratching and scratching and not sleeping as well, either. (This also means Mike & Esther could probably use more sleep, too!) So please pray for overall sleep and quality rest for everyone, but also for the elimination of the underlying causes of this lack of sleep. Thank you!
I believe she may have a bone marrow biopsy next week to see where she's at. Please continue praying that she will be MRD negative by then. If she is not, she will probably complete this treatment anyway, in order to get in her in the best possible position for BMT.
Please pray for both Ava and Gwen. Ava has been experiencing knee pain that keeps her up (or wakes her up), so not only is she in pain, but she's not getting enough sleep. It is unclear if Ava's knee pain is the leukemia or if it is something else. Gwen's allergies have also been acting up (exposure to food allergies somehow), which means she also has been up at night scratching and scratching and not sleeping as well, either. (This also means Mike & Esther could probably use more sleep, too!) So please pray for overall sleep and quality rest for everyone, but also for the elimination of the underlying causes of this lack of sleep. Thank you!
Thursday, June 5, 2014
Home Again
Ava is home again and doing well. Aside from a little diarrhea, she is overall happy and playing. Thank you for your prayers! I'll update if I hear anything else.
Wednesday, June 4, 2014
Staying Overnight
Ava started the new chemo drug on Monday (called Erwinia). I hadn't heard anything about how things were going until just now, but I imagine it's been rather draining.
The plan was for Ava to Erwinia on Mon/Wed/Fri for two weeks, starting this week. She went in today to get her second dose. In general, administration of this drug is pretty traumatic, fraught with tears, screaming, pain... just a lot to endure. She also received vincristine (another chemo agent) and got another spinal tap while still conscious, which was also rather traumatic as they didn't get it on the first try.
Ava's platelets were down to 9 today, so she needed a platelet transfusion. She was asleep during at the time, but in the middle of the transfusion, she bolted awake with itching, scratching, stomach ache, tears and real misery! So she got the Epi-pen and albuterol, and will now spend the night to be observed.
Her reaction may have been to the platelet infusion (as has been her pattern) or to the Erwinia; the docs don't want to take a chance with Erwinia as subsequent reactions may become worse/more severe. They will discontinue the Erwinia treatment, and Ava will return to getting other chemotherapy every Tuesday. On one hand, this is a disappointment as she wouldn't be getting the full, recommended treatment regimen. The plus side is that Ava doesn't have to endure these administrations 3 times a week for two weeks. They will still do a bone marrow biopsy in a couple of weeks to see how she is responding and where we are at. Please pray for Ava to be MRD negative by that time.
I'm not sure if there is more to share right now (our conversation was cut short), but certainly BMT is on the horizon. Please know that all of your faithful prayers and persistent support is a true lifeline even if Esther and Mike aren't quite up to updating on a more timely basis. They feel incredibly blessed to have such an amazing support network.
Please pray for Gwen as well. She is not expecting her parents & Ava to spend the night at the hospital, though we are grateful for Esther's parents who have been loving the girls and able to care for them through all of this.
It certainly seems like a marathon - yet how do you exactly "pace yourself" through leukemia? There are times of intense sprinting, and other times of rest. It isn't quite like the typical marathon training one would imagine (or engage in, if you are a marathon runner). But with leukemia, you don't know when the end is in sight, how long you will have to run, or what kind of finish line you will cross. Please pray for physical, mental and emotional stamina, God's power in their spirits, His recognizable grace at every turn, and His miraculous blessing in the midst of trial. May He be glorified.
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