Sunday, August 17, 2014
Running Tests
They are running tests to see what's going on with Ava. It looks like she does have the eczema herpeticum, but possibly chicken pox/shingles in addition as well. Ava is very miserable and itchy. Thanks for your continual prayers. We will let update you when we find out more.
Saturday, August 16, 2014
Rash Worsens - Back to Lurie's
The roller coaster continues...
Ava is going back to Lurie's due to worsening rash/lesions on her face that have spread to her body as well. The lesions are oozing and crusting; it's possible she has a viral condition called eczema herpeticum (think cold sore virus, but spread beyond the face and much worse). Ava had eczema herpeticum when she was about a year and a half old, and that was very difficult. Scratching the lesions can spread the virus to other parts of her body, in addition to making her susceptible to other bacterial infections.
Please pray for:
Ava is going back to Lurie's due to worsening rash/lesions on her face that have spread to her body as well. The lesions are oozing and crusting; it's possible she has a viral condition called eczema herpeticum (think cold sore virus, but spread beyond the face and much worse). Ava had eczema herpeticum when she was about a year and a half old, and that was very difficult. Scratching the lesions can spread the virus to other parts of her body, in addition to making her susceptible to other bacterial infections.
Please pray for:
- Ava's healing and proper treatment as needed
- peace and alleviation of pain & discomfort
- Mike & Esther - it's hard to watch Ava suffer
- the Lee family as Mike will stay home with Gwen
- God to continue revealing His glory and love even in these difficult situations
Friday, August 15, 2014
Fever & Double Vision
Ava has been feverish and complaining of double vision. They are taking her back to Lurie's to do a blood culture. Since she is not neutropenic at this time, she probably doesn't need to stay at the hospital. However, driving into the city during Friday rush hour for a blood draw after just coming home yesterday is rather trying on the spirit.
Please pray for God's favor all around and for quick resolution of Ava's fever, double vision and grace for the trip there and back. Thank you!
Update @ 12:30am - The Lee family got home a little before midnight. Thank you for your prayers! We will let you know what they find out.
Please pray for God's favor all around and for quick resolution of Ava's fever, double vision and grace for the trip there and back. Thank you!
Update @ 12:30am - The Lee family got home a little before midnight. Thank you for your prayers! We will let you know what they find out.
Thursday, August 14, 2014
A Birthday Discharge!
Ava and her family were discharged today - hooray! What a gift from above to be able to celebrate her 6th birthday at home with her whole family :) Thank you all for your well wishes and prayers for beloved Ava!
Possible Discharge!
Believe it or not, there's a chance that Ava could go home today! Her body has been clearing the MTX fairly well, making this a possibility. What a great birthday present this would be, considering today is Ava's 6th birthday! She's been enjoying the day at Lurie's playing and being with her family.
Thank you for your prayers; they will check her levels later this afternoon to see where she's at. We will update again.
Thank you for your prayers; they will check her levels later this afternoon to see where she's at. We will update again.
Wednesday, August 13, 2014
MTX & BMT
Ava started on methotrexate (MTX), and I understand that things went really well. Now it's just a matter of waiting for the drug to do its thing and for Ava's body to clear it. Once it clears her system (and no other unexpected issues), she can go home.
Looking ahead, BMT is definitely in the picture. Though it's not an imminent decision at this point, it is something that needs to be actively prepared for, so Mike & Esther will need to start making some phone calls. I think they found two people that sort of match Ava (7 out 8 markers match; therefore no one is an identical or perfect match). It is desired to find a perfect match for Ava.
Thank you again for your prayers.
Looking ahead, BMT is definitely in the picture. Though it's not an imminent decision at this point, it is something that needs to be actively prepared for, so Mike & Esther will need to start making some phone calls. I think they found two people that sort of match Ava (7 out 8 markers match; therefore no one is an identical or perfect match). It is desired to find a perfect match for Ava.
Thank you again for your prayers.
Tuesday, August 12, 2014
Back to Chemo
The Lee family enjoyed an incredible time in Florida a couple weeks ago at a cancer retreat with other families battling childhood cancer. What an incredible blessing to be able to connect with other families on the same journey. They returned last week.
Ava is supposed to start her methotrexate today. Due to the drug's toxicity, they will prepare to stay about 4-5 days inpatient until the drug clears Ava's system. Gwen may not be able to see Ava too much during this time. I resurrected the Google doc sign-up if anyone is interested in providing a meal at the hospital (no expectations). If you sign-up, please email me: naisula (at) gmail (dot) com in case I need to reach you with any changes.
Ava appears to be doing well; she is in good spirits and has more energy. However, she has recently developed some hives. They don't seem to bother her too much, but it is a concern still; perhaps there will be more clarity on the situation when they meet with the medical team to discuss some things before Ava starts the methotrexate.
Thank you for your faithful prayers and support for the Lee family. Sometimes it feels like we're saying the same things over and over so it's not always easy to know what to say. But Mike & Esther are so grateful to you who persevere in interceding on Ava's behalf and tirelessly support them on this road.
Please pray for:
- wisdom regarding Ava's care - big decisions, small decisions... both for Mike and Esther as Ava's parents and caregivers and also for the medical team of doctors, nurses, pharmacists, etc.
- good and effective communication among everyone involved
- peace in the midst of it all, remembering and trusting that God Himself is indeed in control
- Ava - what a trooper. It's probably not easy for her to anticipate being in the hospital for several days at least. Please pray for rest for both Ava and Gwen.
- Gwen to still feel a part of everything, even if she may not see Ava very often during the hospital stay.
- God's glory to be seen even through this cancer. He is good and worthy to be praised.
Friday, July 25, 2014
Biopsy Results
Just heard from the doctor: Ava's blasts are at 0.25%. Apparently, this is a decrease from the last biopsy. While we understood Ava's blasts to be 0.2% last time, the pathologist has on record that her blasts were actually 0.3%, so the 0.25% is a slight decrease from previous.
While it is not the MRD negative we continue to pray for, the docs aren't too surprised given that Ava essentially had another round of the same chemotherapy as last time with no new drugs. So they are glad that Ava's blasts continue to trend downward, and they plan to move to the next phase of "maintenance" where Ava will receive high-dose methotrexate (MTX). After this next round, they want to see that her blasts continue to trend downward, not remaining the same or increasing.
The MTX administration will be one week on, and roughly one week off (or until Ava's numbers start to rebound). Then she'll get another week of MTX, with one week off/rebound. This will continue until four weeks of MTX are completed, which can take about 2 months overall. I believe these administrations will also require an inpatient stay because of its toxicity, as they need to monitor Ava until the drug clears her system.
Ava will have the next week off from chemo before starting the MTX. I may resurrect the Google doc to solicit help in providing meals at the hospital, but I will let you know after we have a better idea of when Ava is scheduled for chemo and how long she might end up staying.
Thank you for your perseverance in prayer and support for the Lee family!
While it is not the MRD negative we continue to pray for, the docs aren't too surprised given that Ava essentially had another round of the same chemotherapy as last time with no new drugs. So they are glad that Ava's blasts continue to trend downward, and they plan to move to the next phase of "maintenance" where Ava will receive high-dose methotrexate (MTX). After this next round, they want to see that her blasts continue to trend downward, not remaining the same or increasing.
The MTX administration will be one week on, and roughly one week off (or until Ava's numbers start to rebound). Then she'll get another week of MTX, with one week off/rebound. This will continue until four weeks of MTX are completed, which can take about 2 months overall. I believe these administrations will also require an inpatient stay because of its toxicity, as they need to monitor Ava until the drug clears her system.
Ava will have the next week off from chemo before starting the MTX. I may resurrect the Google doc to solicit help in providing meals at the hospital, but I will let you know after we have a better idea of when Ava is scheduled for chemo and how long she might end up staying.
Thank you for your perseverance in prayer and support for the Lee family!
Hold My Hand
We have been going on bike rides as a family the last few nights. Mike rides ahead with Gwen in the trailer, Ava stays in the middle, and I head up the back. It's unbelievable that we are at the stage in life where our babies are actively participating in life with us.
Ava has been relishing these bike rides and so have we all. We start off around 8 when the weather cools down and we slowly and steadily explore our neighborhood. Riding behind Ava gives me time to think. (She bikes pretty slowly.) I see her gaze move from this interesting thing to that and I tell her to keep her eyes on the road. She stops to comment on the mailbox that looks like a cow. We see a bunny hopping through a yard. She asks questions that get lost in the wind and I have a chance to breathe all of this in from where I am. She rides tirelessly, stopping only for one thing: curbs.
The other night, we started off a little later than usual which meant that by the time we had sufficiently lost ourselves in the neighborhood, we realized it had gotten very dark. We turned our bikes around and headed for home. As the sunlight slipped below the horizon, she began to sing a song. "Shine, shine your light. Just a little bit is all we need. God, shine, shine your light on me."
And soon we were surrounded by darkness. Gwen needed to use the bathroom and we weren't far from home so Mike picked up the speed to get her back...which left Ava in the lead. She pedaled on as strong as ever and belted out her song, making up more verses each time. But every time we got near a curb, she stopped and looked back at me. "Mama, I need you. Will you hold my hand?"
We must have hit 5 curbs on the way home and each time she slowed down to a crawl and looked back at me expectantly. I never once felt annoyed or frustrated or disappointed that she couldn't get across that curb without my help. In fact, I felt honored that she looked toward me and trusted that I would get her safely across that obstacle.
Even knowing that God has more than a mother's heart, I still fret that I'm too needy when it comes to my fears. I still reach out my hand and ask Him to hold on. I still rely on Him to get me across. Yet, I'm pretty confident that He is not disappointed or discouraged by dependance, especially in my fears.
We are patiently waiting for the results of today's biopsy and it feels like a major curb in our lives. We don't know how we'll get across. But I do know that He has my hand and He won't let go until I'm where He wants me to be.
"Take My Hand, Precious Lord" -Thomas Dorsey
Precious Lord, Take my hand,
Lead me on, let me stand,
I am tired, I am weak, I am worn.
Through the storm, Through the night,
Lead me on to the light
Take my hand precious Lord, Lead me home.
When my way grows drear, precious Lord linger near
When my light is almost gone
Hear my cry, hear my call
Hold my hand lest I fall
Take my hand precious Lord, lead me home
When the darkness appears and the night draws near
And the day is past and gone
At the river I stand
Guide my feet, hold my hand
Take my hand precious Lord, lead me home
Precious Lord, take my hand
Lead me on, let me stand
I'm tired, I'm weak, I'm lone
Through the storm, through the night
Lead me on to the light
Take my hand precious Lord, lead me home
Ava has been relishing these bike rides and so have we all. We start off around 8 when the weather cools down and we slowly and steadily explore our neighborhood. Riding behind Ava gives me time to think. (She bikes pretty slowly.) I see her gaze move from this interesting thing to that and I tell her to keep her eyes on the road. She stops to comment on the mailbox that looks like a cow. We see a bunny hopping through a yard. She asks questions that get lost in the wind and I have a chance to breathe all of this in from where I am. She rides tirelessly, stopping only for one thing: curbs.
The other night, we started off a little later than usual which meant that by the time we had sufficiently lost ourselves in the neighborhood, we realized it had gotten very dark. We turned our bikes around and headed for home. As the sunlight slipped below the horizon, she began to sing a song. "Shine, shine your light. Just a little bit is all we need. God, shine, shine your light on me."
And soon we were surrounded by darkness. Gwen needed to use the bathroom and we weren't far from home so Mike picked up the speed to get her back...which left Ava in the lead. She pedaled on as strong as ever and belted out her song, making up more verses each time. But every time we got near a curb, she stopped and looked back at me. "Mama, I need you. Will you hold my hand?"
We must have hit 5 curbs on the way home and each time she slowed down to a crawl and looked back at me expectantly. I never once felt annoyed or frustrated or disappointed that she couldn't get across that curb without my help. In fact, I felt honored that she looked toward me and trusted that I would get her safely across that obstacle.
Even knowing that God has more than a mother's heart, I still fret that I'm too needy when it comes to my fears. I still reach out my hand and ask Him to hold on. I still rely on Him to get me across. Yet, I'm pretty confident that He is not disappointed or discouraged by dependance, especially in my fears.
We are patiently waiting for the results of today's biopsy and it feels like a major curb in our lives. We don't know how we'll get across. But I do know that He has my hand and He won't let go until I'm where He wants me to be.
"Take My Hand, Precious Lord" -Thomas Dorsey
Precious Lord, Take my hand,
Lead me on, let me stand,
I am tired, I am weak, I am worn.
Through the storm, Through the night,
Lead me on to the light
Take my hand precious Lord, Lead me home.
When my way grows drear, precious Lord linger near
When my light is almost gone
Hear my cry, hear my call
Hold my hand lest I fall
Take my hand precious Lord, lead me home
When the darkness appears and the night draws near
And the day is past and gone
At the river I stand
Guide my feet, hold my hand
Take my hand precious Lord, lead me home
Precious Lord, take my hand
Lead me on, let me stand
I'm tired, I'm weak, I'm lone
Through the storm, through the night
Lead me on to the light
Take my hand precious Lord, lead me home
Thursday, July 24, 2014
Biopsy Done
Ava had her biopsy done today and everything went well. Thanks for your prayers! Now we are back to waiting on the results. We will let you know when we hear; we are praying for good news (MRD negative)! Thank you for standing with us in fervent prayer.
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