The truth is, I don't want to write anymore. But I pulled out the girls' journals anyway and wrote an entry today. Because, the thing is, it's not about what I want.
I write because they need to know how loved they were, how precious were the moments we shared, how deep my life was because of them. And I write here because we need prayers. We need them in a desperate sort of way.
I've been sleeping with Ava these days. The months leading up to her diagnosis, Mike and I were just beginning to experience the freedom of our two girls finally sleeping by themselves. We were never really into the sleep training thing because we were such failures at it. But, oh there was absolute joy in being able to put them to bed and walk away to spend a few hours of "me" time. It was glorious.
Now, all I want to do is sleep in her bed. I look forward to my nighttimes. I cuddle with them for what seems like hours before they fall asleep. I wouldn't feel comfortable sleeping anywhere else than next to them with their limbs totally and consistently invading my space. Life is funny that way.
Tonight, after putting Ava to bed, I went downstairs to watch t.v. When it was time for bed, I walked into her room to go to bed and found her sitting up just staring. It startled me and I asked if she needed to go to the bathroom. Yes, of course she did. As I lifted my sleepy girl off the toilet, she said, "Mama, could you hold me while we sleep?"
Ava is not the snuggly type. That's Gwen. Gwen has always preferred sleeping on top of either Mike or myself than on her own belly. Contrarily, Ava loves to give an initial hug and then roll as far away as she can get from me.
But tonight, she asked to be held so I held her tight, her head heavy on my arm. Breathing in her baby scented bald head, something inside me broke. My heart is already in a million pieces. What is there left to shatter? But the pieces keep chipping away and I wonder if we could ever be whole again.
My girl is tired from her disease, destroyed by the drugs, and just plain exhausted by it all. So are we all. We need rest. And prayers. Lots and lots of prayers. I know you are with us, praying for us from miles away. But, tonight, I feel so alone.
I guess that is the bag of emotions we carry with us. Though at times it is lonely, we know we are never alone...Thank you for that.
"Never once did we ever walk alone. Never once did you leave us on our own. You are faithful, God, you are faithful. Every step we are breathing in your grace. Evermore, we'll be breathing out your praise." Matt Redman
Thursday, May 29, 2014
Wednesday, May 28, 2014
Chemo Tuesday
Sorry it's been so long since the last post. We'll try to be better about keeping you abreast of things.
I spoke to Esther relatively briefly today. Mike took Ava to get her chemo. Port access for chemo was a bit difficult for Ava. If you recall, she had a port placed in her chest a couple weeks ago. This eliminated the need for IV lines in her arm and gives her much more mobility (for example, she can go swimming and bathe without concern). This is because the port is surgically placed beneath her skin and is completely covered, unlike the lines in her arm. When chemo is to be administered, they insert a needle into her skin to access the port beneath. They used some numbing medication today to alleviate any discomfort from the needle, but whether it was fear or the anticipation of pain and/or discomfort itself, it was hard for Ava to endure without crying. (Imagine someone needing to stick a needle in your upper chest!)
Ava also had another LP today (lumbar puncture), but I think today was the first time she was awake for it, unlike the other times when she was under anesthesia. Thankfully, it didn't require multiple sticks, but it wasn't the easiest experience, either...
Due to low RBCs (I'm pretty sure it was RBCs; definitely not platelets), Ava needed a blood transfusion today. Unfortunately, that meant it was 4 hours for the infusion, which didn't start until mid-late afternoon. So, another long and tiring day at the hospital, and yet they are so grateful to be doing this on an outpatient basis.
Something to keep in prayer: remember the one drug on this ALL treatment that gives virtually causes everyone to have a reaction? They decided a while back that they wouldn't give it to Ava. The thought was that maybe she could continue treatment without this drug. However, they decided that instead of this drug, they will give her an alternative agent to that drug. (I think we mentioned this before). So they won't give the actual drug that notoriously causes reactions, but a different, similar one. The catch? It requires Ava to go to Lurie's 3x/week, and it would be an injection in her thigh with a large bore needle. ("Large bore" means that the diameter of the needle is fairly large, which means more pain... unlike insulin needles which are thin/small in diameter and not so painful. Sorry if this is redundant info shared previously; I don't know what people know/remember).
This drug is supposed to start next week. I believe Esther will be the one taking Ava to her appointments on Monday, Wednesday and Friday. Pray for grace and stamina in traveling to/from the hospital multiple times that week, and for God's "peace that transcends all understanding" for Ava (and parents, especially Esther). May God's peace drive out and replace any and all fear! Please pray for smooth administration and absence of pain, and/or courage in the midst of it.
They plan to do another bone marrow biopsy mid-June to see if the treatment is working. (And likely reassess timeline of BMT). Of course, we continue to pray for full healing and restoration.
Thank you again for your faithful friendship and partnership!
I spoke to Esther relatively briefly today. Mike took Ava to get her chemo. Port access for chemo was a bit difficult for Ava. If you recall, she had a port placed in her chest a couple weeks ago. This eliminated the need for IV lines in her arm and gives her much more mobility (for example, she can go swimming and bathe without concern). This is because the port is surgically placed beneath her skin and is completely covered, unlike the lines in her arm. When chemo is to be administered, they insert a needle into her skin to access the port beneath. They used some numbing medication today to alleviate any discomfort from the needle, but whether it was fear or the anticipation of pain and/or discomfort itself, it was hard for Ava to endure without crying. (Imagine someone needing to stick a needle in your upper chest!)
Ava also had another LP today (lumbar puncture), but I think today was the first time she was awake for it, unlike the other times when she was under anesthesia. Thankfully, it didn't require multiple sticks, but it wasn't the easiest experience, either...
Due to low RBCs (I'm pretty sure it was RBCs; definitely not platelets), Ava needed a blood transfusion today. Unfortunately, that meant it was 4 hours for the infusion, which didn't start until mid-late afternoon. So, another long and tiring day at the hospital, and yet they are so grateful to be doing this on an outpatient basis.
Something to keep in prayer: remember the one drug on this ALL treatment that gives virtually causes everyone to have a reaction? They decided a while back that they wouldn't give it to Ava. The thought was that maybe she could continue treatment without this drug. However, they decided that instead of this drug, they will give her an alternative agent to that drug. (I think we mentioned this before). So they won't give the actual drug that notoriously causes reactions, but a different, similar one. The catch? It requires Ava to go to Lurie's 3x/week, and it would be an injection in her thigh with a large bore needle. ("Large bore" means that the diameter of the needle is fairly large, which means more pain... unlike insulin needles which are thin/small in diameter and not so painful. Sorry if this is redundant info shared previously; I don't know what people know/remember).
This drug is supposed to start next week. I believe Esther will be the one taking Ava to her appointments on Monday, Wednesday and Friday. Pray for grace and stamina in traveling to/from the hospital multiple times that week, and for God's "peace that transcends all understanding" for Ava (and parents, especially Esther). May God's peace drive out and replace any and all fear! Please pray for smooth administration and absence of pain, and/or courage in the midst of it.
They plan to do another bone marrow biopsy mid-June to see if the treatment is working. (And likely reassess timeline of BMT). Of course, we continue to pray for full healing and restoration.
Thank you again for your faithful friendship and partnership!
Saturday, May 17, 2014
We Need You
Wow, it seems it's been a while since I've updated. I just haven't felt like writing but as I told Ava for the umpteenth time today as she was getting her blood drawn, "In life there will be times we have to do things we don't want to do," I felt the need to put my words into practice. So here I am...with nothing really to say.
Life has been fairly "normal" but slightly prioritized if that means anything. The days are filled with eating meals, running errands, going to school, paying bills, going to clinic, taking baths, going to bed and so on. But as "normal" as the days begin to look, there is a sense of urgency where it seems like we can't wait another day to do what we've ever put off doing.
So, that's why we have a puppy now. (Insert emoticon of someone gone cuckoo).
Ava has wanted a dog for the longest time and Gwen can't get enough of them. That time back in August when I was helping the EMT's keep Ava from falling into unconsciousness, my one regret was that we had not given Ava a puppy. I remember that it was part of my pleading with her to regain her strength, "Ava, wake up! There are so many things we have yet to do...like have a puppy..."
After all was well again, the puppy fell to the wayside because realistically I knew that I'd be the one taking care of that dog. Boy, was I right.
We are now the proud owner of a super duper cute Havanese puppy that goes by the name of Pippin (totally Ava inspired). He is a cuddly little bear and a quick learner. Being a perfectionist, I can't stand the thought of pee on my floors but it seems Pippin didn't get the memo. Potty training is HARD. Did I mention that I have (involuntarily) assumed most of the responsibility involved in the care of this puppy? ;)
He is a good addition to our home and hopefully will one day be the "therapy dog" that Ava needs. At this time, Ava is still not 100% herself and is continuing to feel sick. Her stomach virus lasted 10 days while ours only lasted a couple of days. This is to be expected because of her ANC level but it is still so hard to see our fun loving girl laid out on her bed with very little energy. She has been in and out of the ER the whole week: on Monday, Tuesday, and Saturday.
We ask for prayers that this next round of chemo kills all of the remaining cancer cells. We need our girl to fight hard and strong and beat this thing. Of course, there are no guarantees that she will but we long to increase our faith and to hope for the very best outcome in our situation.
Recently, I have been following the stories of other families going through pediatric cancer and it totally destroys me. I can't imagine losing my child. Ava's diagnosis doesn't ever get old. Contrarily, it rips a gaping hole in my heart...every single day.
I've seen many moms rise up in faith as they pass their children on toward Heaven and they do it with so much freaking beauty. I am not as strong as they are. God, himself, would need to stretch down and physically hand me a new heart or else I just may lay down and die.
On my Facebook page, I posted the story of a mom who lost her baby to cancer on Wednesday. A song that has been running through my head constantly these past few months is Matt Maher's, "Lord I Need You." After reading this mom's blog, my heart felt overwhelmed and I wanted to write down the chorus to this song. Of course, my brain chose that moment to forget the lyrics. Ava, hearing me trying to recall the words under my breath, jumped in and finished out the chorus for me. She must have been singing it in her own heart for many weeks too.
When I asked her to sing it for me so that I could record it, she forgot the words a few times. She asked me to remind her. I thought that was a good idea. When I forget his faithfulness, she'll remind me and when she forgets that she's not alone, I will remind her. And when we lose sight because we are shrouded by doubt and sadness, we humbly ask that you remind us of his unfailing love and our undeniable need for him.
"Lord, I Need You" By: Matt Maher
Lord, I come, I confess
Bowing here I find my rest
Without You I fall apart
You're the One that guides my heart
Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You
Where sin runs deep Your grace is more
Where grace is found is where You are
And where You are, Lord, I am free
Holiness is Christ in me
Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You
Teach my song to rise to You
When temptation comes my way
And when I cannot stand I'll fall on You
Jesus, You're my hope and stay
Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You
You're my one defense, my righteousness
Oh God, how I need You
My one defense, my righteousness
Oh God, how I need You
Life has been fairly "normal" but slightly prioritized if that means anything. The days are filled with eating meals, running errands, going to school, paying bills, going to clinic, taking baths, going to bed and so on. But as "normal" as the days begin to look, there is a sense of urgency where it seems like we can't wait another day to do what we've ever put off doing.
So, that's why we have a puppy now. (Insert emoticon of someone gone cuckoo).
Ava has wanted a dog for the longest time and Gwen can't get enough of them. That time back in August when I was helping the EMT's keep Ava from falling into unconsciousness, my one regret was that we had not given Ava a puppy. I remember that it was part of my pleading with her to regain her strength, "Ava, wake up! There are so many things we have yet to do...like have a puppy..."
After all was well again, the puppy fell to the wayside because realistically I knew that I'd be the one taking care of that dog. Boy, was I right.
We are now the proud owner of a super duper cute Havanese puppy that goes by the name of Pippin (totally Ava inspired). He is a cuddly little bear and a quick learner. Being a perfectionist, I can't stand the thought of pee on my floors but it seems Pippin didn't get the memo. Potty training is HARD. Did I mention that I have (involuntarily) assumed most of the responsibility involved in the care of this puppy? ;)
He is a good addition to our home and hopefully will one day be the "therapy dog" that Ava needs. At this time, Ava is still not 100% herself and is continuing to feel sick. Her stomach virus lasted 10 days while ours only lasted a couple of days. This is to be expected because of her ANC level but it is still so hard to see our fun loving girl laid out on her bed with very little energy. She has been in and out of the ER the whole week: on Monday, Tuesday, and Saturday.
We ask for prayers that this next round of chemo kills all of the remaining cancer cells. We need our girl to fight hard and strong and beat this thing. Of course, there are no guarantees that she will but we long to increase our faith and to hope for the very best outcome in our situation.
Recently, I have been following the stories of other families going through pediatric cancer and it totally destroys me. I can't imagine losing my child. Ava's diagnosis doesn't ever get old. Contrarily, it rips a gaping hole in my heart...every single day.
I've seen many moms rise up in faith as they pass their children on toward Heaven and they do it with so much freaking beauty. I am not as strong as they are. God, himself, would need to stretch down and physically hand me a new heart or else I just may lay down and die.
On my Facebook page, I posted the story of a mom who lost her baby to cancer on Wednesday. A song that has been running through my head constantly these past few months is Matt Maher's, "Lord I Need You." After reading this mom's blog, my heart felt overwhelmed and I wanted to write down the chorus to this song. Of course, my brain chose that moment to forget the lyrics. Ava, hearing me trying to recall the words under my breath, jumped in and finished out the chorus for me. She must have been singing it in her own heart for many weeks too.
When I asked her to sing it for me so that I could record it, she forgot the words a few times. She asked me to remind her. I thought that was a good idea. When I forget his faithfulness, she'll remind me and when she forgets that she's not alone, I will remind her. And when we lose sight because we are shrouded by doubt and sadness, we humbly ask that you remind us of his unfailing love and our undeniable need for him.
Pippin is pretty smart. Since he pees all over the place, he knows he has to be extra cute to make up for it.
Ava has already taught Pippin how to "come" and "sit." Lots of bribery was involved.
Pippin has decided that he is "alpha" over Gwen. Gwen is not going to give up the title of "boss" that easily. This should be very interesting.
"Lord, I Need You" By: Matt Maher
Lord, I come, I confess
Bowing here I find my rest
Without You I fall apart
You're the One that guides my heart
Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You
Where sin runs deep Your grace is more
Where grace is found is where You are
And where You are, Lord, I am free
Holiness is Christ in me
Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You
Teach my song to rise to You
When temptation comes my way
And when I cannot stand I'll fall on You
Jesus, You're my hope and stay
Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You
You're my one defense, my righteousness
Oh God, how I need You
My one defense, my righteousness
Oh God, how I need You
Thursday, May 15, 2014
Catching Up
I'm so sorry that I haven't updated the blog like I promised; sickness came through the house, which meant that I didn't know what day of the week it was, missed Esther's updates on Facebook and was out of the loop for a bit. I'll bring you up to speed on the past week as chronicled via Esther's posts on Facebook:
Friday, May 9:
"we wait until she is asleep before we break down. we never show our doubt. we make her believe it will be okay. and even when our hearts can't take it, we wear that smile because that's all the guarantee she needs to know that everything's gonna be alright. that's how we beat cancer--one miraculous smile at a time. prayers are great too.
we will beat you [cancer] or die trying."
Saturday, May 10:
Friday, May 9:
"we wait until she is asleep before we break down. we never show our doubt. we make her believe it will be okay. and even when our hearts can't take it, we wear that smile because that's all the guarantee she needs to know that everything's gonna be alright. that's how we beat cancer--one miraculous smile at a time. prayers are great too.
we will beat you [cancer] or die trying."
Saturday, May 10:
"dropping tears like crazy tonight for all the babies fighting cancer. and mine too.
held ava close today as she toughed out some major stomach cramps from a bug that's been going around. finally couldn't stand it anymore and started to cry with her. and that's when she saved the day again.
ava:(stroking my hair) don't cry mama. i'm okay. i'm okay.
me: i feel so sad when you are hurting. i'm sorry you feel so lonely through this whole thing. i wish i could take the pain away.
ava: it's okay, mama. cuddling with you makes me feel better.
and then she proceeded to ask me a whole bunch of questions probably to distract me from crying. "what makes you happy? what makes you sad? what makes you scared? what makes you nervous? what makes you excited?" and on and on. then she asked me if i liked my mother's day card. she said she picked it because the rainbows on the card reminded her of me--beautiful and colorful. i asked her if i was colorful because of my freckles and she nodded. the laughter bubbled up past my tears.
she is wiser than I am, smarter than I am, more lovely than I am, and more godly than I am. i'm honored to call her my daughter. i'm going to celebrate her today and every day."
Sunday, May 11 (Mother's Day):
held ava close today as she toughed out some major stomach cramps from a bug that's been going around. finally couldn't stand it anymore and started to cry with her. and that's when she saved the day again.
ava:(stroking my hair) don't cry mama. i'm okay. i'm okay.
me: i feel so sad when you are hurting. i'm sorry you feel so lonely through this whole thing. i wish i could take the pain away.
ava: it's okay, mama. cuddling with you makes me feel better.
and then she proceeded to ask me a whole bunch of questions probably to distract me from crying. "what makes you happy? what makes you sad? what makes you scared? what makes you nervous? what makes you excited?" and on and on. then she asked me if i liked my mother's day card. she said she picked it because the rainbows on the card reminded her of me--beautiful and colorful. i asked her if i was colorful because of my freckles and she nodded. the laughter bubbled up past my tears.
she is wiser than I am, smarter than I am, more lovely than I am, and more godly than I am. i'm honored to call her my daughter. i'm going to celebrate her today and every day."
Sunday, May 11 (Mother's Day):
"To my daughters,
Because of you, I am me. Thank you for giving me the gift of being called mama. If I could do it again, I wouldn't change a thing. The chocolate you gave me today was sweet but the real gift is you.
With all of me,
Mama"
Monday, May 12:
Despite Ava having severe stomach cramping/diarrhea from a stomach bug passing through the family, Ava was able to have her central port surgically placed as scheduled and it was successful. This gives Ava more freedom and mobility since there is no IV line in her arm and a central port also no IV line care for Mike & Esther. This also allows any "harsher" chemo agents to be administered with less trauma to surrounding tissues. Ava also received chemo in her spine.
However, around midnight, Ava spiked a fever:
"Barreling toward hospital for a fever of 102. Asking for prayers that the stomach flu didn't get more serious or that her port surgery didn't introduce bacteria. Mike sick with fever too and gwen will wake up to no parents and sibling again this week. Feeling like things are out of control but I know that prayer is powerful.
James 5:13-14 NLT
Are any of you suffering hardships? You should pray. Are any of you happy? You should sing praises. Are any of you sick? You should call for the elders of the church to come and pray over you, anointing you with oil in the name of the Lord."
Tuesday, May 13: (No chemo given as originally scheduled)
Because of you, I am me. Thank you for giving me the gift of being called mama. If I could do it again, I wouldn't change a thing. The chocolate you gave me today was sweet but the real gift is you.
With all of me,
Mama"
Monday, May 12:
Despite Ava having severe stomach cramping/diarrhea from a stomach bug passing through the family, Ava was able to have her central port surgically placed as scheduled and it was successful. This gives Ava more freedom and mobility since there is no IV line in her arm and a central port also no IV line care for Mike & Esther. This also allows any "harsher" chemo agents to be administered with less trauma to surrounding tissues. Ava also received chemo in her spine.
However, around midnight, Ava spiked a fever:
"Barreling toward hospital for a fever of 102. Asking for prayers that the stomach flu didn't get more serious or that her port surgery didn't introduce bacteria. Mike sick with fever too and gwen will wake up to no parents and sibling again this week. Feeling like things are out of control but I know that prayer is powerful.
James 5:13-14 NLT
Are any of you suffering hardships? You should pray. Are any of you happy? You should sing praises. Are any of you sick? You should call for the elders of the church to come and pray over you, anointing you with oil in the name of the Lord."
Tuesday, May 13: (No chemo given as originally scheduled)
"Thank you SO much for your prayers! They were powerful and effective!
We arrived at Lurie's around midnight last night with a fever of 102 degrees. Within an hour of receiving just one dose of tylenol, Ava's fever broke and her labs came back with great blood counts. Her neutrophils (the blood cells that fight infection) were DOUBLED since her counts from yesterday. In fact, the doctors were surprised at how high her numbers were. We were officially discharged at 3:00 am but needed to be back at Lurie's by 7:30 am for chemo so they let us sleep in the ER room.
In the morning, Ava woke up with severe stomach pain and pain near the operation site but NO FEVER! We got more labs drawn today and 2 x-rays that didn't show anything alarming. We won't get chemo today but we won't have to be admitted either. Ava is in great spirits after her pain medication and we'll be heading home soon to get some rest. We believe 100% that you all were a part of her healing and we thank you for faithfully lifting us up when we were too weak to do it all by ourselves."
Overnight, Ava spikes another fever of 102 and goes back to the hospital. Around 5am her fever broke and she is discharged. Her ANC (neutrophils) went down to 3000. It's Wednesday.
We arrived at Lurie's around midnight last night with a fever of 102 degrees. Within an hour of receiving just one dose of tylenol, Ava's fever broke and her labs came back with great blood counts. Her neutrophils (the blood cells that fight infection) were DOUBLED since her counts from yesterday. In fact, the doctors were surprised at how high her numbers were. We were officially discharged at 3:00 am but needed to be back at Lurie's by 7:30 am for chemo so they let us sleep in the ER room.
In the morning, Ava woke up with severe stomach pain and pain near the operation site but NO FEVER! We got more labs drawn today and 2 x-rays that didn't show anything alarming. We won't get chemo today but we won't have to be admitted either. Ava is in great spirits after her pain medication and we'll be heading home soon to get some rest. We believe 100% that you all were a part of her healing and we thank you for faithfully lifting us up when we were too weak to do it all by ourselves."
Overnight, Ava spikes another fever of 102 and goes back to the hospital. Around 5am her fever broke and she is discharged. Her ANC (neutrophils) went down to 3000. It's Wednesday.
Thursday, May 15:
The family is all home now. Mike had some fevers yesterday as the stomach bug seemed to have gotten to him (it passed through all Lee members in some form). He is feeling better today; thank you for any further prayers for a full and quick recovery!
Ava and Gwen have been enjoying their time at home! I'll let Esther share more about that when she gets a chance.
Ava will continue to receive chemo every Tuesday over the next couple months. She is more likely to become neutropenic this round (decreased neutrophils and therefore decreased infection-fighting ability), so your continued prayers are an incredible blessing.
We keep saying it, but it bears repeating. Thank you for your faithful prayers. Thank you for your encouraging notes, messages, comments and countless thoughts that don't even get mentioned. Thank you for walking this road with the Lee family. Thank you for checking the blog (even when the updates aren't as timely or frequent). THANK YOU for standing alongside them in faith. May the Lord continually increase our faith in Him, for He is an amazing God!
Thursday, May 8, 2014
Biopsy Results & Plan
The results of Ava's biopsy came in earlier tonight. Short answer? Ava is MRD positive with blasts of 0.06%. At this point of her treatment, the doctors were really hoping for MRD negative. A positive MRD (Minimal Residual Disease) at the end of induction is not optimal. Unfortunately, Ava was MRD positive for AML treatment and MRD positive for ALL treatment. Because her diagnosis of Biphenotypic Leukemia is so rare, there really is nothing to compare her results to. This adds another level of frustration. Moving forward, the medical team plans to keep Ava on ALL therapy for a couple of reasons:
- Ava's cancer cells appear to have more ALL type cells within the blasts.
- Ava's quality of life has been SO much better on ALL, and this therapy will allow her to continue to be treated as out-patient. She also did so well (emotionally and physically) with ALL treatment.
The medical team hopes to get Ava to MRD negative after this round. If that doesn't happen, we will prepare for a BMT this summer, as that would be the best way to treat the Leukemia at that point. However, bone marrow transplants have an overall survival rate of 50-60%, so that puts things in perspective.
It's hard to know how to process these results; I'll share more tomorrow when I get a chance, but wanted to at least let you know the results and plan at this point.
As always, thank you so much for your partnership on this journey. Your continued prayers are deeply appreciated.
Wednesday, May 7, 2014
Biopsy & Preliminary Match(es)
Ava had her biopsy and spinal tap done this morning, and everything seemed to go smoothly. Thank You, Lord! Thank you for your prayers.
Hopefully we'll find out the biopsy results tomorrow and then have an idea of which chemotherapy route will be taken.
Mike & Esther also met with the heme/onc team today to find out a little bit more about BMT.
They found 2 matches in the U.S. at this point! (Not sure if anything panned out from the potential Japan match). They are both "good" (not perfect) matches, meaning 7 out of 8 factors match. Both potential donors have stepped forward to give another blood sample, so we are so thankful that they have responded to the call and are willing to proceed as necessary. There are also 2 cord blood matches (but only 1 viable match due to possible Hep B in the other cord blood), so cord blood transplantation is also a possibility. However, bone marrow transplants have an overall survival rate of 50-60%, so that puts things in perspective. This is why BMT is still considered a last resort.
Thank you for your continued prayer support! I'll post more later and of course update you with results when we find out.
Hopefully we'll find out the biopsy results tomorrow and then have an idea of which chemotherapy route will be taken.
Mike & Esther also met with the heme/onc team today to find out a little bit more about BMT.
Thank you for your continued prayer support! I'll post more later and of course update you with results when we find out.
A Year to Remember
I have walked away from this post about 15 times this week. I'm anxious to write but stuck in so many ways. There are a lot of emotions I want to pin down before they escape. Forgetting is a huge fear but also a reprieve. There are things I wish were a distant memory, like this whole cancer business. But then there are things I want to recall so desperately and yet the memories are fading fast. Like my pre-cancer Ava, for example.
During that first week at Lurie's, there was a photograph opportunity with an organization called Flashes of Hope. Their main goal is to provide beautiful pictures of children during their fight against cancer. Even though we were all feeling pretty lousy, we took the chance and smiled for the camera. At our last clinic, we were given our developed pictures. I couldn't believe how much Ava had changed since that day.
Her hair has disappeared only to be replaced by a few wispy strands that she pats down when she catches a glimpse of herself in the mirror. It's so painful that I want to forget this year.
Then I watch them playing together, hanging on each other for fear that chemo might tear them away at any moment. I see how much they've grown in their friendship together and I want to remember this year.
Her frail frame has been traded in for a sturdier build resulting from the high doses of steroids she's been on. She lumbers around with her head down asking for more food but hating her desire to eat. We tell her she's beautiful but she's not convinced. I want to forget this year.
I make myself do the dreaded deed of sorting through her clothes to find something more comfortable for her expanding belly. I work quickly trying not think about how clothes remind me that I need to shop this year's sales for next year's wardrobe but I can't because I don't know what next year holds. I stumble upon a dress that reminds me of happier times and suddenly I smile. I want to remember this year.
I see the shy look she gave the photographer that day, which is now captured on a black and white 8X10 to remind us that she once knew a childlike innocence. I want to remember, so very badly, life before cancer.
"Mom, I don't feel like a kid anymore. I feel old...in my bones, like a grandma," she says to me one morning. "I look in the mirror and I can't believe that is me."
As if the physical pain were not enough, cancer brings about an emotional weight like no other. Watching my child struggle with accepting the changes she sees in herself breaks me. And I so badly want to forget this time in my life. I want it to be quick and brief and painless. But then I stop myself because I wonder if I am wishing away life. This is the life we were given with its ups and downs and its beauty and pain. It's not perfect but it's what we have.
I'll remember this year as a bookend year. It began with us almost losing Ava to anaphylaxis days before her 5th birthday. I promised people I would update them on my previous blog but I never did because it was just too fresh. I'll never forget that summer night when I accidentally fed Ava rice pasta that was cross contaminated with water from a pot of wheat pasta. It only took a few drops of the contaminated water to trigger a massive allergic reaction. As she lay in Mike's arms after her first Epi-pen, she began to turn blue. I was upstairs throwing together our hospital bag when Mike's scream hit my ears. I ran down to see him shaking our slowly fading daughter awake.
By the time the ambulance arrived, Ava was slipping in and out of consciousness. We administered a second and then a third Epi as the ambulance raced toward the hospital. We had to leave Mike and Gwen at home because, in our delirium, we had left the front door wide open and the EMT's wouldn't let us bring Gwen on. As the ambulance peeled away from the driveway, I remember thinking that this could be the worst decision of my life. Because if Ava had died that day she would have left without being surrounded by her family.
The EMT's and I worked together to revive Ava. We slapped her lightly, and then began to shake her more vigorously as she became increasingly quiet. Her every breath was labored and I could see that she no longer heard my desperate pleas to stay with me, to stay alive. She was so intent on the act of breathing. Something we easily take for granted, she fought viciously for that day. Watching her breathe in, I pleaded with her not to die. Watching her breathe out, I could see her struggle to live. And on and on we went--her grappling for life and me imploring her not to give up. It probably only took 15 minutes to get to the hospital but, to us, it was a lifetime. Immediately upon arrival, Ava was given a fourth dose of epinephrine that stopped the reaction. We were discharged from the hospital the night before her birthday and we celebrated her day with a much deeper appreciation for life.
That same summer a little girl died while on vacation with her family. After unknowingly eating a rice krispy treat with peanuts she went into anaphylactic shock and, soon after, died in her parent's arms. She received three Epi-pens that day and her dad was even a physician. Yet she died while Ava survived under similar circumstances. This drives us to our knees in humble acceptance of His grace.
Tomorrow she will undergo a biopsy that will hopefully give us a clearer picture of how to proceed with her treatments. We are terrified that our new "normal" will be disrupted again but we have enjoyed the beauty in the mundane this past month. Depending on the outcomes of the biopsy, our lives will change in distinct ways. Please pray with us that Ava's biopsy would reveal ZERO percent blasts and a negative MRD.
Ava will turn 6 in August and, most likely, she will still be fighting for her life when she celebrates her birthday this year. But even with its ugly and sad moments, I want to remember this bookend year because of all that we've learned and experienced through the pain. We laughed often, loved deeply, cried intensely, grew immensely and lived with renewed passion for each other this year. And, most of all, we decided to give all of ourselves to the people around us without calculating the benefits or counting the cost.
That makes it a year worth remembering.
During that first week at Lurie's, there was a photograph opportunity with an organization called Flashes of Hope. Their main goal is to provide beautiful pictures of children during their fight against cancer. Even though we were all feeling pretty lousy, we took the chance and smiled for the camera. At our last clinic, we were given our developed pictures. I couldn't believe how much Ava had changed since that day.
Her hair has disappeared only to be replaced by a few wispy strands that she pats down when she catches a glimpse of herself in the mirror. It's so painful that I want to forget this year.
Then I watch them playing together, hanging on each other for fear that chemo might tear them away at any moment. I see how much they've grown in their friendship together and I want to remember this year.
Her frail frame has been traded in for a sturdier build resulting from the high doses of steroids she's been on. She lumbers around with her head down asking for more food but hating her desire to eat. We tell her she's beautiful but she's not convinced. I want to forget this year.
I make myself do the dreaded deed of sorting through her clothes to find something more comfortable for her expanding belly. I work quickly trying not think about how clothes remind me that I need to shop this year's sales for next year's wardrobe but I can't because I don't know what next year holds. I stumble upon a dress that reminds me of happier times and suddenly I smile. I want to remember this year.
I see the shy look she gave the photographer that day, which is now captured on a black and white 8X10 to remind us that she once knew a childlike innocence. I want to remember, so very badly, life before cancer.
"Mom, I don't feel like a kid anymore. I feel old...in my bones, like a grandma," she says to me one morning. "I look in the mirror and I can't believe that is me."
As if the physical pain were not enough, cancer brings about an emotional weight like no other. Watching my child struggle with accepting the changes she sees in herself breaks me. And I so badly want to forget this time in my life. I want it to be quick and brief and painless. But then I stop myself because I wonder if I am wishing away life. This is the life we were given with its ups and downs and its beauty and pain. It's not perfect but it's what we have.
I'll remember this year as a bookend year. It began with us almost losing Ava to anaphylaxis days before her 5th birthday. I promised people I would update them on my previous blog but I never did because it was just too fresh. I'll never forget that summer night when I accidentally fed Ava rice pasta that was cross contaminated with water from a pot of wheat pasta. It only took a few drops of the contaminated water to trigger a massive allergic reaction. As she lay in Mike's arms after her first Epi-pen, she began to turn blue. I was upstairs throwing together our hospital bag when Mike's scream hit my ears. I ran down to see him shaking our slowly fading daughter awake.
By the time the ambulance arrived, Ava was slipping in and out of consciousness. We administered a second and then a third Epi as the ambulance raced toward the hospital. We had to leave Mike and Gwen at home because, in our delirium, we had left the front door wide open and the EMT's wouldn't let us bring Gwen on. As the ambulance peeled away from the driveway, I remember thinking that this could be the worst decision of my life. Because if Ava had died that day she would have left without being surrounded by her family.
The EMT's and I worked together to revive Ava. We slapped her lightly, and then began to shake her more vigorously as she became increasingly quiet. Her every breath was labored and I could see that she no longer heard my desperate pleas to stay with me, to stay alive. She was so intent on the act of breathing. Something we easily take for granted, she fought viciously for that day. Watching her breathe in, I pleaded with her not to die. Watching her breathe out, I could see her struggle to live. And on and on we went--her grappling for life and me imploring her not to give up. It probably only took 15 minutes to get to the hospital but, to us, it was a lifetime. Immediately upon arrival, Ava was given a fourth dose of epinephrine that stopped the reaction. We were discharged from the hospital the night before her birthday and we celebrated her day with a much deeper appreciation for life.
That same summer a little girl died while on vacation with her family. After unknowingly eating a rice krispy treat with peanuts she went into anaphylactic shock and, soon after, died in her parent's arms. She received three Epi-pens that day and her dad was even a physician. Yet she died while Ava survived under similar circumstances. This drives us to our knees in humble acceptance of His grace.
Tomorrow she will undergo a biopsy that will hopefully give us a clearer picture of how to proceed with her treatments. We are terrified that our new "normal" will be disrupted again but we have enjoyed the beauty in the mundane this past month. Depending on the outcomes of the biopsy, our lives will change in distinct ways. Please pray with us that Ava's biopsy would reveal ZERO percent blasts and a negative MRD.
Ava will turn 6 in August and, most likely, she will still be fighting for her life when she celebrates her birthday this year. But even with its ugly and sad moments, I want to remember this bookend year because of all that we've learned and experienced through the pain. We laughed often, loved deeply, cried intensely, grew immensely and lived with renewed passion for each other this year. And, most of all, we decided to give all of ourselves to the people around us without calculating the benefits or counting the cost.
That makes it a year worth remembering.
"You're going have all of me because you're worth every falling tear. You're worth facing any fear. You're going to know all my love, even if it's not enough, enough to mend our broken hearts. But giving you all of me is where I'll start." -Matt Hammitt
Friday, May 2, 2014
Fork in the Road
First, thank you again to everyone for all your prayers, messages, meals and various other ways you've supported the Lee family. We know that perhaps your prayers get the least "notice" as they are done privately, but they have the greatest power as our Lord in heaven hears and answers, and He is the one who holds all the power.
As Esther said, Ava will have another bone marrow biopsy next week. Up until this point, Ava has been going in to get chemotherapy on Thursdays, as she did earlier today. She also gets labs done each time, and her blasts remain at 0%. Keep in mind that these are "peripheral" blasts... meaning the blasts that are circulating in her blood. It's great that her numbers remain at zero and that her white count and ANC haven't really gone down, but the bone marrow biopsy will be more telling about what's happening at the source. You may recall that Ava's last bone marrow biopsy (post-AML therapy) revealed 0.7% blasts -- a great number, considering how high it was at the start and how high it persisted for so long after her first round of AML chemotherapy... but the docs still want to see a lower number.
The doctors want Ava's next bone marrow biopsy to reveal blasts of <0.01% in order for her to continue ALL treatment. Anything higher than that, they will switch her back to AML and be more aggressive about finding a bone marrow match. Bone marrow transplant is still the last resort, given that it's no walk in the park, even with a perfect match.
So we are nearing a fork in the road, if you will -- though this really has nothing to do with a "choice" about which route Ava will take. It hinges on the results of her bone marrow biopsy next week.
The two paths are completely different. If Ava's blasts are <0.01%, she will continue ALL treatment. This would be a HUGE blessing for a number of reasons:
How do you prepare for something like this? The ability to plan seems to be stripped away. If Ava continues ALL, perhaps they can plan other "regular life" things in this pseudo-normalcy. But if she switches to AML, it's going back to the hospital for who-knows-how-long, more ups-and-downs with labs, how Ava's response will be, possible platelet transfusions, figuring out how to coordinate life at the hospital... and needing to cancel/adjust the "regular life" things they were trying to plan before (though trying not to plan at the same time). How does one mentally and emotionally prepare for a bone marrow transplant? It seems to be two different worlds hanging on one numerical result.
Yet we know that God is still in control, and He is still good, no matter the outcome. Please pray for favorable results; Ava's complete healing; the peace of God to powerfully dwell in the hearts and minds of each Lee family member, that anxiety would not overtake them. Perhaps one of the blessings of finding ourselves where we have absolutely no control is resting in God's provision and seeing Him do immeasurably more than we ask or imagine.
Thank you again for your faithful prayers.
As Esther said, Ava will have another bone marrow biopsy next week. Up until this point, Ava has been going in to get chemotherapy on Thursdays, as she did earlier today. She also gets labs done each time, and her blasts remain at 0%. Keep in mind that these are "peripheral" blasts... meaning the blasts that are circulating in her blood. It's great that her numbers remain at zero and that her white count and ANC haven't really gone down, but the bone marrow biopsy will be more telling about what's happening at the source. You may recall that Ava's last bone marrow biopsy (post-AML therapy) revealed 0.7% blasts -- a great number, considering how high it was at the start and how high it persisted for so long after her first round of AML chemotherapy... but the docs still want to see a lower number.
The doctors want Ava's next bone marrow biopsy to reveal blasts of <0.01% in order for her to continue ALL treatment. Anything higher than that, they will switch her back to AML and be more aggressive about finding a bone marrow match. Bone marrow transplant is still the last resort, given that it's no walk in the park, even with a perfect match.
So we are nearing a fork in the road, if you will -- though this really has nothing to do with a "choice" about which route Ava will take. It hinges on the results of her bone marrow biopsy next week.
The two paths are completely different. If Ava's blasts are <0.01%, she will continue ALL treatment. This would be a HUGE blessing for a number of reasons:
- ALL is done on an outpatient basis (BIG PLUS!) This means she can be in and out on the same day, and chemo is a brief IV push through her line.
- ALL is so much better tolerated; no loss of appetite or weakness or feeling really crummy all around
- Outpatient treatment means Gwen gets to be with the family, too, and not feel passed around. There's much less disruption in family life.
How do you prepare for something like this? The ability to plan seems to be stripped away. If Ava continues ALL, perhaps they can plan other "regular life" things in this pseudo-normalcy. But if she switches to AML, it's going back to the hospital for who-knows-how-long, more ups-and-downs with labs, how Ava's response will be, possible platelet transfusions, figuring out how to coordinate life at the hospital... and needing to cancel/adjust the "regular life" things they were trying to plan before (though trying not to plan at the same time). How does one mentally and emotionally prepare for a bone marrow transplant? It seems to be two different worlds hanging on one numerical result.
Yet we know that God is still in control, and He is still good, no matter the outcome. Please pray for favorable results; Ava's complete healing; the peace of God to powerfully dwell in the hearts and minds of each Lee family member, that anxiety would not overtake them. Perhaps one of the blessings of finding ourselves where we have absolutely no control is resting in God's provision and seeing Him do immeasurably more than we ask or imagine.
Thank you again for your faithful prayers.
bear with me
i can't sleep because i have to write. I can't write because i have to sleep. i have a million ways i'd rather express what i have to say but, at this point, i just want to get it out there. we need prayers for ava. i'll most likely write a more coherent post later and patty will definitely write a clearer post soon as well.
good is good and bad is bad. the two don't mix. the only one who's able to make the bad good is God.
ava: it's so unfair that i have cancer. i wish i were just a regular kid that goes to school everyday.
me: i know, baby. but life is unfair. it's not fair that we have a home to live in but others are homeless. it's not fair that we have food to eat and others go hungry. it's not fair that we can go to a hospital for your leukemia and other's cant. (i could have gone on all day)
ava: (cutting me off because she probably gets it far better than i do) and it's not fair that jesus had to die in our place.
we are counting our blessings every freaking day lest we forget how unfair things are in our favor.
for those of you praying with us so far, thank you so much for your love. what more could we ask for and what more could we want? we desperately need prayers that ava's cancer is in remission with ZERO percent blasts. her biopsy is this Wednesday. depending on the results, we will have two very different treatment plans. the optimal outcome (if she is in remission) is that we stay on ALL and beat this thing like nobody's business. the second option (if cancer cells are still present) is to move immediately back to AML therapy and actively look for a bone marrow transplant. i think it's okay to say that i'm terrified. thank you for carrying this with us.
"Whom have I in heaven but you? And earth has nothing I desire besides you. My flesh and my heart may fail but God is the strength of my heart and my portion forever." Psalm 73:25-26
(after reading over this post, i realize i have been saying the same news over and over again about ava's treatment. but for some reason each time i hear it from the doctor, it's like i'm hearing it for the first time. maybe because i'm still waiting for them to say "just kidding" and instead it's just getting increasingly "real." more on that later but thank you for letting me process things over and over again. you are patient and kind. ;) and i am blessed.)
ava: it's so unfair that i have cancer. i wish i were just a regular kid that goes to school everyday.
me: i know, baby. but life is unfair. it's not fair that we have a home to live in but others are homeless. it's not fair that we have food to eat and others go hungry. it's not fair that we can go to a hospital for your leukemia and other's cant. (i could have gone on all day)
ava: (cutting me off because she probably gets it far better than i do) and it's not fair that jesus had to die in our place.
we are counting our blessings every freaking day lest we forget how unfair things are in our favor.
for those of you praying with us so far, thank you so much for your love. what more could we ask for and what more could we want? we desperately need prayers that ava's cancer is in remission with ZERO percent blasts. her biopsy is this Wednesday. depending on the results, we will have two very different treatment plans. the optimal outcome (if she is in remission) is that we stay on ALL and beat this thing like nobody's business. the second option (if cancer cells are still present) is to move immediately back to AML therapy and actively look for a bone marrow transplant. i think it's okay to say that i'm terrified. thank you for carrying this with us.
"Whom have I in heaven but you? And earth has nothing I desire besides you. My flesh and my heart may fail but God is the strength of my heart and my portion forever." Psalm 73:25-26
(after reading over this post, i realize i have been saying the same news over and over again about ava's treatment. but for some reason each time i hear it from the doctor, it's like i'm hearing it for the first time. maybe because i'm still waiting for them to say "just kidding" and instead it's just getting increasingly "real." more on that later but thank you for letting me process things over and over again. you are patient and kind. ;) and i am blessed.)
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