Wednesday, December 31, 2014

Laying Hold of Hope

I am in my 36th week of pregnancy. Up until a week ago, I would routinely forget that I was pregnant. My only reminders would be my biweekly trip to the OBGYN. Last week I went in for my checkup and barely managed to prop my body up on the table. My beloved doctor walked in and lifted up my shirt to listen for baby's heartbeat. She saw my jeans were hardly closed with the help of a very stretchy rubber band. "Wow, still rockin' your jeans!" she remarked.

Um. No. Me stuffing my legs into my pre-pregnancy jeans were not my attempt at being stylish. In fact, I was so desperate to find anything other than my tight jeans with the zipper gaping open that I tore around the apartment begging the Lord to help me find just one pair of black leggings. The only other choice was Mike's Korean pajama pants, and although blissfully comfortable, they seemed the least appropriate of all the choices. 

When I got home, I pulled off those jeans, laid down on the bed, and drew in a deep breath. Except that breath came up sharp and stunted like all the other breaths I had been drawing in for the past few weeks. 

I can't seem to breathe. My lungs won't fill up completely with the stuff that will satisfy and sustain me. I partly blame the shrinking space between my stomach and my chest but I know it's something more than that. 

A little over a week ago, we found out that Ava was MRD negative for the first time ever. I sat in the Ronald McDonald apartment and let Mike's words wash over me. "There is no evidence of disease. She has zero cancer cells." I listened, hung up, posted on FB, sent off a few texts, and then sat down. It was about 10 minutes later before I felt the tears. What did this mean? Is the nightmare finally over? Is Ava going to be okay? Can we finally begin to breathe deeply again? I allowed myself time to digest this news from every angle. Did this mean we could pick up the hopes we had gently put aside-hopes for this child to grow up and live a long and healthy life?

We celebrated this news with dancing and hugging and screaming and crying. But before long, I felt something scary trying to push up past my elation. This tiny button of fear threatened to steal my joy away. What if she relapses? What if the cancer comes back? How would we survive a second attempt at beating this disease? So I decided that I would forge ahead with a guarded hope, knowing that cancer often comes back to claim the body it was banned from. I see it in countless cancer surviving families, where we look toward the future with gratitude and yet are still haunted by ghosts of the past. We put up our defenses and temper our hopes in case we have to face another battle in the future. We no longer naively believe that bad things don't happen to good people or that we will be spared the sufferings of this world. We have been through too much to claim invincibility. 

Walking through the halls today, I bumped into a mom I had befriended in my earlier days at the hospital. She was back with her daughter because the chemo that was supposed to keep the cancer at bay while searching for more options had failed and the blasts had jumped from 2% to 90% in a matter of weeks. This was the child's 3rd relapse. Oh God, what words of comfort can you impart on a mama who has had her hope deferred that many times? Families that have seen the ugly face of cancer know better than to compartmentalize these stories and tuck them neatly away as someone else's experience. Because we know that it could be any one of us on the other side of that story. 

I'm unsure how my "guarded" hope looks to the world and to the Lord. Does it seem ungrateful? Do I look jaded? I don't know. But of this I'm sure. My God is kind. He sees my confused reactions to his miraculous works. He holds none of that against me. He tenderly calls me to complete trust in him, regardless of the situations or the outcomes. He calms my heart when it wavers at what my daughter looks like with all the steroids and other medications coursing through her body. He is compassionate when I forget to thank him for the overflow of blessings because my eyes are so fixed on the 10 different medications that I have to coerce Ava into taking without throwing up. He understands when I want to snap at everyone because the hospital room feels like it's closing in on me. He sees me gasping to pull in one deep breath of life. And instead of showing anger at my fear, he coaches me to go ahead and struggle, to keep fighting to hold on to hope with every ragged breath I take.

So while my breath still catches at the sound of Ava screaming from her GVHD pain, or the sight of her swollen face and bloated body, or her sad eyes trying to make sense of her discomfort, l suck in the air around me as greedily as I can and I fight to hope for a cancer-free future for Ava and her friends. I hope for the day that her hair grows back and she runs around free from the aches and pains of a cancer-ridden body. I hope to see her miraculously be granted the gift of motherhood and enjoy raising her children. I hope that she uses her experiences to gain further ground in awareness for pediatric cancer. I hope for many many good things in this lifetime for her. But, most of all, I fight to lay hold of God's solid unbreakable promise where faith, hope, and love abound and never fail.  







Monday, December 29, 2014

Day 38: status on discharge

At this point, we are waiting for Ava to get to a point where they would consider discharging her from the hospital... there was originally some hope before Christmas, but then that came and went. While it has been good for Ava to have her four-hour daily passes out of the hospital and get a change of scenery (even if it's just to the apartment), it has also made returning to the hospital even more depressing for her. In a way, sometimes she my prefer not to leave in the first place; it may seem worse to have a brief moment away, only to have it taken back and have to return to the hospital again.

As I understand it, one of the main factors affecting her ability to be discharged is whether or not she can take cyclosporine orally. Since this is an important drug to combat transplant rejection, Ava needs to be able to take meds orally and not have diarrhea, since that may compromise her body's absorption of the drug. Ava has already been taking cyclosporine (and other meds) orally, and her stool has been more firm, but her cyclosporine levels are still a bit too low. We're not sure why this is the case, as it would seem her body should be absorbing more cyclosporine than the levels indicate. Apparently there was some previous discussion about discharge today or possibly Thursday. Today no longer seems a possibility, so hopefully Thursday will be the day.

Another part that creates a bit of a hiccup in discharge is the holidays. The hospital has a policy where patients cannot be discharged the day before a holiday (because then the clinics would be closed if anything came up), and also no discharge on the weekends, including Fridays. With Christmas and New Year's falling on these weeks, it narrows the days that Ava could even be considered for discharge. Tomorrow isn't a possibility (I think it's because New Year's Eve counts as a holiday), nor can she be discharged on Wednesday as it is the day before New Year's. However, it's possible for her to be discharged on Thursday (even though it's New Year's Day), since clinics would be open on Friday. But if she doesn't get discharged on Thursday, then her next chance wouldn't be until the following Monday because of the weekend...

This morning, Ava had an unexpected episode of extreme stomach pain that had her doubled over in a fetal position crying over the pain.

Please pray that Ava's body would absorb the cyclosporine well, that she would have no diarrhea, no stomach pain and that she would be discharged as soon as possible! Ultimately, please pray for her healing and discharge from hospital. Please pray for her to be encouraged in spirit as well. However this all would happen, we'll gladly take it!

Thank you for your prayers, as always!

Sunday, December 28, 2014

Day 37

(From Esther):

Day 37: I love you, Ava! Gwen will always be our medicine of choice. The only side effect of her treatment is slobber.


Day 36 (Saturday)

(From Esther):

Day 36: Slept at Ronald McDonald with Gwen for the first time in days. Got this picture and text from Ava later that night. "Back pain, swollen, kind of miserable, tired, sad, and lonely. Love, Ava."

I don't want to say I "lol"ed cuz that would make me look bad, but I kind of did. Poor Ava, you are cute even when you are down.

#day36 #mysunshine #steroidssuck


Friday, December 26, 2014

Christmas Part 2

(From Esther):

Merry Christmas! Ava had a slight setback today with her condition and was feeling fairly sick. However, we were still able to use our pass for a short time later that evening. We were overwhelmed by the love we were shown through friends and strangers who spoiled the girls silly. Thank you, from the deepest parts, for a memorable and joy filled Christmas!! Thank you also for celebrating Ava's great news with us! We won't stop hoping and praying for a cure for all children battling for their lives.


Thursday, December 25, 2014

Merry Christmas! (Day 34)

(From Esther):

Merry Christmas from Seattle! Ava and Gwen are taking it easy and watching A Christmas Story. We thank God for time to enjoy our family as we celebrate his sacrificial love!



Life is good because even when we don't have much, 

we have each other. 


Enjoying Christmas cupcakes!


Santa stopped by!









Wednesday, December 24, 2014

Jailbreak! (temporary)

Ava was able to go out on a 4-hr pass today! She remarked that this is the first time she's used her legs in a really long time. That short path from the hospital bed to the bathroom (while tied to IV poles) sure gets old really quick! Don't worry... she wasn't painting the town, exposing herself to all sorts of germs. But what a treat to be able to leave the hospital and get a change of scenery! She just went back to the apartment and hung out there for a while, but it was so refreshing and great to taste normal life again (at least, life outside the hospital).

Ava was able to switch her cyclosporine from IV to oral yesterday, so that was a factor in her being able to go out on pass today. She was able to switch another IV med to oral today as well, and she is now only connected to one IV pole as opposed to two. She continues to have some diarrhea/GVHD in the gut, but as long as things stay relatively stable/under control, they project that she could be discharged next Monday or Tuesday! (Hospital policy is that patients cannot be discharged the day before a holiday or on a holiday/weekend, so that pretty much knocks out the rest of this week). Please pray for continued progress; any steps backward would postpone discharge.

Meanwhile, they will savor these 4-hr passes daily (as long as Ava's doing well). We give thanks to God for His continued blessing.

Thank you so much for your thoughts and prayers!

Friday, December 19, 2014

Little Soldier

You can't have too much of this face, right?



Day 28: MRD NEGATIVE!

Ava's bone marrow biopsy results came back: she's MRD negative!!! You know what incredible great news this is, so thank you for celebrating this milestone with us! Thank you for your persistence in prayer and for your love, friendship and encouragement. Even though we know that God is able to do immeasurably more than we ask or think, it never ceases to amaze us and to leave us awestruck when we see Him at work! Somehow, it's His way of deepening our worship of Him when we are humbled by His great love and grace. It's our desire that our worship would continue to deepen regardless of life circumstance.

Meanwhile, the endoscopy showed that Ava does have GVHD in the gut. She has been started on meds to coat the GI tract in attempts to abate the extreme pain she still experiences when using the restroom. The goal is for her to increase her oral intake of food (and therefore transition to as many oral meds as possible), optimize pain control and see her diarrhea resolve.

Thank you so much for walking this road with us! There's still a long journey ahead, but we are ecstatic to share in this milestone together. Praise be to the Lord!

***********

(From Esther's FB, before biopsy results came back):

Day 28: Ava's biopsy has come back and there is evidence of GVHD. She is still in a lot of pain but she continues to bring joy to those around! We are awaiting her bone marrow results. Again we pray for MRD negative and hope this is the day we find out that she has zero cancer cells left!!! Thank you for praying for this important result with us.
#day28

Thursday, December 18, 2014

Day 26

(From Esther)

Day 26: Ava is going in for an endoscopy to find the cause for her severe gut pain. She spent most of the day crying from pain, hunger ( she was NPO), and steroid induced emotions. We are praying for clear results so that we can treat her pain. Although GVHD is not wanted, in Ava's situation, a slight case would be helpful due to her residual cancer. So with mixed emotions, we pray for some GVHD and ultimately trust God's sovereign plan. Thank you for praying with us!
‪#‎day26‬


*******************

In the end, Ava's endoscopy got pushed back 4 hours, which meant she remained NPO (nothing by mouth) that entire time. She was already super hungry by lunch time, so waiting an additional 4 hours for the procedure was extremely difficult!

They hope to have results by Friday, as Ava's diarrhea/stomach pains continue. Her bowel movements showed some signs of improvement for about a day, but the diarrhea returned.

Meanwhile, Ava had chimerism testing done. This is where they check (post-transplant) to see how much of the white blood cells she is producing are the donor's cells vs. her own. Test results of her peripheral blood showed 100% of the cells are from the donor! This is great news! They will still test the actual bone marrow, as the bone marrow will be more accurate than the peripheral blood. If the bone marrow test results reveal the same (100% donor cells), this should point to Ava being MRD negative for the first time! I believe they will check the bone marrow tomorrow (Thursday), anticipating results to come back on Friday along with the endoscopy results. If all looks good, Ava may be permitted to get a 4-hour pass to leave the hospital next week! This would be a huge treat, considering she's been on isolation for weeks and cooped up in the hospital room. Of course, she won't be touring Seattle out in the public or anything, but the opportunity to get a change of scenery and have some more room to stretch out and play would be a real blessing. All little steps toward healing and hopefully, discharge!

Today was also the day that Seattle's KISS 106.1FM station had their 14th annual "One Big Kiss" Radiothon to raise money for Seattle Children's Hospital. The station interviewed 12 children at the hospital ahead of time in order to share their stories as part of the radiothon. Ava was one of those interviewed, and you can listen to her interview on the website as well as listen to the stories of the other children featured.

Thank you again for your continued support, prayers and love. We are extremely thankful to God for His abundant blessings along this difficult road. Though it has been extremely difficult at times, His hand is evident and we give Him praise. Thank you for praying for continued strength and endurance for the whole Lee family, and of course for Ava's complete healing. To God be all glory.

Tuesday, December 16, 2014

Beauty for Ashes

The hardest part of a hospital stay is enduring the nighttime hours. Deep into the night, you hear the low moaning of a child in pain. Those groans grow louder until they are full blown sobs and howls. Sometimes it's my own baby screaming in pain, and other nights it's the cries of our neighbors that keep us up.

The cancer unit is an eery place where healing often occurs through painful procedures, ingesting poison, awaiting the scars to cover up the wounds. Bald headed children walk around the halls, pale from missing the sun, and parents trail behind them trying to keep up the hope that is sometimes stolen away by each piece of bad news.


But this is also the place where strength is reborn and where seeds of empathy are planted. Because how much more can you feel for your neighbor's turmoil when your eyes have barely begun to dry from your own tears? And when can you exercise strength better than in a battle for your life? The other day, Ava stopped mid-play and began to pray for the patient whose cries she heard through the walls...

Ava: Dear God, please remove his pain. Please, please remove his pain.

Being broken is not easy but, maybe, it is necessary.
‪#‎beautyforashes‬

Friday, December 12, 2014

A Post from FB about Day 20


Day 20: (a day late) Ava's been having a hard day. She is sleeping a lot and the doctors are still trying to get to the bottom of her stomach pain. One highlight from the day was getting our mother-daughter matching heart necklaces from @poesi jewelry. The girls are thrilled that they have the same necklace as mama!

Oh, and someone please help me convince Mike that he does not need one nor is it appropriate that he wear one! — with Julie Booma.

Day 20

Ava continues to have severe stomach cramps each time she has a bowel movement/diarrhea; not sure if it's due to GVHD or mucositis, but if it continues, she will have a GI scope done next Wednesday.

She otherwise remains afebrile and is in great spirits. She's eaten very little, though, mostly due to fear of stomach pain. She is positive for the rhinovirus again and they will also check for norovirus (stomach bug). Ava still has active levels of CMV, though the numbers are trending down. We pray for  continued decrease to the point of inactivity.

Thank you for your love and support.

Thursday, December 11, 2014

Why We Fight

(From Esther's FB):

Day 19: This face is the reason why my big ol' preggo belly can withstand the hospital bed. It's the reason why we can dry our tears from the horrible sleepless nights of pain and try again in the morning. It's the reason why Gwen can smile even after days of not being put to bed by mama. And it's the reason we'll never ever give up.
#day19 #curecancer

Wednesday, December 10, 2014

Day 19

Ava's ANC was over 4000 today! Because this was her 3rd day with an ANC over 2500, they were able to discontinue the med used to boost her neutrophils. It's always a good thing to be able to discontinue meds!

Ava's fever seems to be gone, though the diarrhea has been pretty tough for her to withstand. Ava is displaying a little bit of an appetite, but she's reluctant to eat for fear of GI issues. She wakes up at night with severe cramping/pain (to the point of tears) and needing to use the restroom. Then afterwards, the itching down there can be even more bothersome. I don't think the itching has been as severe as it was a while ago, but the whole experience is tiresome both physically and mentally. It's hard not to wrestle with cabin fever on top of this, being on isolation for a couple weeks now and not allowed to leave the room.

Thankfully, her C.diff seems to have cleared, so the diarrhea does not appear to be a result of that, though she also had a little blood in her stool. They're not sure if it's due to GVHD in the gut, or if it's because her body's adjusting as she begins to eat a little more? 

Still, the doctors all remark about how well Ava is doing and has been doing these past weeks. We recognize God's faithfulness and grace no matter the circumstance, but all the more so in His rich goodness.

I understand at this point that one of the main goals/factors in Ava's discharge is her ability to eat and maintain adequate nutrition by mouth. (Of course, she would also need to be free of infection). As she is able to transition to oral meds instead of IV meds, they can consider the prospect of discharge. Discharge would mean being out of the hospital, but as you know, Ava will need to remain in Seattle for follow-up for another couple of months or so.

Thanks for your faithful prayer support! In the meantime, I will add the Lees' mailing address under "Seattle Help" as well as give a link for meal sign-up in case any local folk are able and willing to help out. Thank you!

Tuesday, December 9, 2014

Ballerina Ava

(From Esther's FB):

Ava: Mommy, can I do ballet when my hair grows back?
Me: Of course! You don't even have to wait for your hair to grow back.
Ava: But I want to look nice for the class and I don't want people making fun of me again.
Me: If anyone says anything about your hair, you can tell them how brave you were to beat cancer.
Ava: Mommy, that's bragging. I don't think that's nice.

If anyone deserves to brag, it's you Ava. But you were always a better person than me.

‪#‎6goingon60‬ ‪#‎shesusuallyright‬

Day 18 (and some backtracking)

I'm sorry I haven't been able to update the blog in a few days. I wasn't in touch with the Lees for a couple of days, and wasn't on Facebook to share some of Esther's photos, so I will go back and post those photos. (I will backdate them for chronology's sake, so you're not crazy for not seeing them before. It's called blog magic!) There is a brief explanation of Gwen's skin therapy from Day 16 as well.

Ava was previously on two different types of isolation before. She was taken off one yesterday (I believe respiratory isolation), and they were hopeful that Ava could be taken off contact isolation today... which would mean that she could walk around and leave her hospital room!  Unfortunately, Ava had a fever and diarrhea this morning, so she remains in isolation.

(From Esther's FB):
Day 18:

Ava woke up with a fever this morning and had to get a chest x-ray to check for pneumonia. We're slightly bummed because today was the day that she may have qualified to get out of isolation. Although we are disappointed, we remember God's awesome blessings throughout this journey. Thank you for being with us in spirit and in prayer. Ava is so grateful for her prayer warriors!
‪#‎day18‬ ‪#‎givethanks‬
A sleeping Ava being transported to X-ray.
Normally she would be wearing a mask
due to being on isolation, but since she was sleeping,
Esther opted to cover her instead for less disturbance.

It's hard to be waken up after a restless night to get a chest X-ray!
Let's be done with this cancer thing already!
Thanks for praying for Ava!

Monday, December 8, 2014

Day 17

(From Esther's FB):

Day 17: Ava was interviewed for the "One Big Kiss for Children's" radiothon to raise money for Seattle Children's Hospital hosted by Kiss 106.1. The hosts kept grabbing at their hearts each time she spoke. Lol. Hopeful that the listeners would be moved to donate to such a great hospital!
‪#‎day17‬ ‪#‎kiss106‬.1 ‪#‎workitgirl‬

Sunday, December 7, 2014

Day 16

(From Esther's FB):

Day 16: "I'm teaching Gwen about the world."
‪#‎day16‬





Not even wet wrap therapy can bring this girl down. Nothing gets in Gwen's way.
‪#‎eczemaproblems‬ ‪#‎boss‬



The allergist recommended that Gwen receive wet wrap therapy a couple times a day for an hour each. This may look like mere wet towels wrapped around her body, but underneath are layers of steroids, Vaseline (and possibly some other ointments) lovingly applied by her parents...before and after each treatment. The hope and plan is to get her skin to a good baseline, and then seek to manage and maintain that from then on. She's been so patient in enduring her wet wrap sessions! Thanks for your prayers for her allergies/skin as well.

Saturday, December 6, 2014

Celebrate Good Times!


Day 15: Ava is officially engrafted!! Praise God for all these blessings and we thank you for rejoicing with us. We celebrated by buying enough rice krispies to shower the girls with! This was Gwen's best day ever, I'm sure.
#day15 #gwenlovesfood #happyengraftmentava

Day 15: ENGRAFTMENT!

It's official: AVA'S ENGRAFTED!!!

This is overwhelmingly great news, we know you all are just as excited as we are. I didn't get a chance to connect with the Lees yesterday so I didn't know how the day went. Apparently Ava's ANC was 734 yesterday, though she had a rough morning with severe stomach pain, knee pain and headache. Everything checked out fine on the tests/labs, however, so they are just monitoring her pain and GI issues. Her pain this morning isn't as severe as yesterday. If it persists and/or intensifies, they will consider getting a CT scan, but at this point they will just monitor her and see.

This morning, her ANC came back at 2435 (!) They apparently consider yesterday to be her official date of engraftment. Perhaps it's because she now has two consecutive days of ANC over 500, they can retrospectively consider that first day to be engraftment. (?) Regardless, we are all ecstatic over the news and give praise and glory to God! Thank you so much for your prayers. They are, and continue to be, an important part of this whole journey.

Ava's mouth continues to look pretty good with regards to mucositis, though her appetite hasn't been great as she really hasn't eaten in three days. Therefore, she has been receiving IV nutrition through TPN and lipids. Her diarrhea seems to be gradually resolving, so that's good. Remember her seizure a couple weeks ago? Well, her EEG (study of brain activity) came back normal, and she will continue to take anti-seizure meds while she's taking cyclosporine.

Ava seems to be retaining some fluid the past couple of days. They are closely monitoring her kidney and liver function to make sure all is well. They are particularly concerned for any signs of sinusoidal obstruction syndrome (SOS), which is a kind of liver damage that can happen as a result of high-dose chemo/BMT. In my very limited understanding, it seems to be a serious condition (and potentially fatal) that can't be prevented nor really cured. Treatment would be supportive -- trying to manage and minimize symptoms or further complications. We understand that part of the reason this first month is critical is because complications can happen after everything seems okay. Thank you for your prayers against any complications.

Please celebrate and rejoice with us over the good news of Ava's engraftment! While we recognize the uncertainty of the days to come, we also fully rejoice in God's amazing work! Let us dance like David danced in 2 Samuel 6, where David "danced before the Lord with all his might."

Thank you for praying that things will continue successfully, with no SOS, no injury to kidneys/liver (or any other organ), and for Ava's appetite to return and other symptoms to resolve.

THANK YOU, LORD!

Thursday, December 4, 2014

Day 13 and more

Ava's ANC went up to 434 today! Woohoo! We continue to pray for successful engraftment!

Ava slept most of the day yesterday, not sure why. But she managed to still sleep at night (some of her meds probably helped). As far as I understand, she hasn't had any fever or anything, but I'm not exactly sure how Ava's been doing today. I don't know how her itching has been, either, but I'll update as I hear more.

They did detect some CMV (cytomegalovirus), so she will receive meds for that. CMV can be hard on immunocompromised patients, so we appreciate your prayers for the CMV to be under control. Similar to the HSV virus that causes cold sores or Ava's herpeticum, CMV is a virus that stays dormant in your body until something triggers it to become active, and there's no cure for it. Antivirals can slow the reproduction of the virus, but can't eliminate it. Thank you for praying that Ava will not experience any further symptoms or complications as a result.

Some additional prayer requests:

  • Gwen - some recent blood work revealed that Gwen also has hyperelevated IgE levels. You may recall that before transplant, Ava received a drug (Xolair) to decrease her IgE levels in hopes of minimizing any hypersensitivity or allergic reactions. Xolair is only approved in patients with IgE levels of less than 1,000. Ava had an IgE level measuring at 22,000 prior to that, but somehow dropped to 800 pre-transplant, so decided to try Xolair on her then. Gwen's IgE level came back as 20,000 --- very similar to Ava's super-high levels. So they want to do some further testing on Gwen, including some genetic testing to look for any genetic mutations that may affect her presently or in the future. They can't say whether or not there's a link to the girls' allergies and leukemia, but they want to investigate and find out more given Gwen's allergies as well. Please pray for this whole process and how/when it will take place. It's hard to think about putting another child through more stuff, but of course everyone's just as concerned about Gwen's health.
  • Insurance - please pray for smooth and accurate transitions to changes in insurance and smooth reconciliation of billing/coverage, etc.
We just want to reiterate how valuable your friendship and support have been! We pray for God's blessings of joy and peace upon you and your loved ones. Please know that Mike & Esther would still love to hear how you are doing, (but please forgive them if they aren't able to respond right away). Thank you!

Wednesday, December 3, 2014

Day 12: Good News!

Great news! Ava's ANC today is 99! If her ANC reaches 500 for two days in a row, she's officially engrafted!!! The doctors are amazed and excited!

For a point of reference, it takes about 2 weeks for bone marrow transplants to graft, and about 4 weeks for cord blood transplants to graft... patients with early engrafting of cord blood may graft around 3 weeks. Ava isn't even at 2 weeks post-transplant!

The doctors continue to marvel at the way Ava seems to be taking the transplant so well. As previously mentioned, most patients are in so much pain right now that they can't even eat, or have difficulty with all the vomiting. Yesterday was the first day that Ava didn't really eat anything, but she still takes as many meds orally as she is able, which amazes the docs. Last night, Ava took 5 vials of meds orally! Most patients are only taking one med by mouth at this point due to the severe mucositis (that's the one medication that can't be given via IV), but Ava took 5 meds by mouth. (You go, girl!) Admittedly, she did feel pretty nauseous as a result (though no vomiting), and they all seem to taste pretty awful, but she's been pressing on like a true champ. She knows which med is the most palatable, and saves that one for last.

Certainly, there have been some tough times and Ava has had her share of tears. But in the grand scheme of things, we continue to recognize God's great gift of grace in these past weeks, which has allowed Ava to continue playing and being active when the "usual" is feeling pretty sick and not at all active or eating.

Now we will begin to see how much GVHD (graft-vs-host disease) Ava will experience. They expect (and want) to see at least some degree of GVHD, demonstrating that there is some fight/activity, but the desire is for very mild and short-lived symptoms. The docs warn that we may see some more GVHD in the gut in the days to come, evidenced by nausea/vomiting/diarrhea. Ava has already been experiencing some itchiness which may also be a result of GVHD.

It is not uncommon for the ANC levels to wax and wane. The desire is to see an upward trend, but it's also possible to see her ANC levels go up and down a bit. We will have to wait and see how everything plays out.

GVHD is a long-term battle; to fare well early on, or to make it past certain time markers isn't a guarantee that there won't be GVHD to battle down the line in different forms, even years out. There is acute GVHD as well as chronic GVHD, which is why Ava will still need to be very careful about being around lots of people. In fact, it is recommended that she not be in school for the first year post-transplant due to the risk of infection and being exposed to germs.

A big prayer request is Ava's itching. It's actually a little embarrassing to share about, but Ava's been having some severe, internal itching around her bottom. It could be a result of mucositis in her GI healing, or it could be GVHD in her gut. Either way, it's causing some severe discomfort... and because it's an internal itching, it can't be relieved by scratching or anything else, and has been so intense and unbearable that it has brought Ava to tears, leaving everyone feeling pretty helpless. The meds for C.diff started resolving her diarrhea, but the reappearance of looser stools may signify that Ava's showing some symptoms of GVHD in the gut. So, having to use the restroom is not an easy experience, and then having to deal with the itching on top of that. Thanks in advance for your prayers!

Praises:

  • early signs of ANC levels coming back up!
  • Ava's remarkable experience post-transplant
  • God's answers to so many of your faithful prayers; He is amazing!

Prayer requests:

  • relief of itching
  • for mild GVHD
  • continued (and full) engraftment
  • for utter and crushing defeat of any remaining cancer cells in Ava's body

Thank you so much! We are excited to rejoice in this good news with you all.

Hallelujah Christmas

(From Esther):

I was brought up in the faith so I know the Christmas story forwards and backwards. But becoming a mom has given me a glimpse of God's love like I've never known. In the past year, as we battled a fierce cancer in our daughter, we have looked death right in the face, and have only tasted the sorrow of the deep grief that comes with the loss of a child.

I can imagine Mary, ready to go into labor, looking for a place for her precious baby to lay. I can hear her sobs as her first-born son suffers on the cross for everyone else's crimes. And then my heart pounds at the love that was shown-- that in our major failing, God made a way to lift us up all the way to a life eternal with Him.

Amazing. Beautiful. Incomprehensible. Love.

I need this Christmas reminder as I sit in the hospital nursing my daughter back to health. I'm truly thankful this season for reminders, big and small, of His faithfulness, His grace, His unmatched love for someone like me.

‪#‎christmasmiracle‬ ‪#‎alovelikenoother‬


(click on link to see a rendition of "Hallelujah" by Leonard Cohen,
with rewritten lyrics by Cloverton to honor Christ)

Day 11

(Sorry for the late post, this is from late last night):

Day 11: Gwen consoling Ava who was suffering from some severe itching. Makes me thankful for all the pseudo sisters I have in my life.
‪#‎day11‬ ‪#‎kidsister‬


Tuesday, December 2, 2014

Day 10

(From Esther):

Day 10: Thank you for prayers. I've been making Ava do school work all morning. When Miss Betsy came by to ask if Ava wanted to make music, she answered, "What a RELIEF!" Sigh, this kid.


Monday, December 1, 2014

Day 9: From Esther

Tonight was Ava's hardest night yet. She woke up from a late nap and began to cry uncontrollably. All the meds in her system and the restlessness from being in isolation had caught up to her.

Cancer is a horrible monster and I hate that my daughter suffers the wrath of a broken world. But we cried and kicked and screamed until we felt better. And eventually we did get over it.

Best line of the night was when Mike got to the hospital and we told him what happened. He took Ava in his arms and said this epic prayer:

Dear God, I want to beat the living crap out of cancer.

Sunday, November 30, 2014

Day 9

Last night was a tough night. Nothing "especially bad"... it's just hard to fight cancer and persevere at it. Right?

We praise God for the way Ava has weathered all of this with grace, gentleness and humility, but it's a really tough road for these little feet to walk. The countless meds that are being put into Ava's body... the potential side effects as well as the actual side effects experienced... the unexplained effects that aren't attributed to a particular drug... the pain... the overall feeling of yuckiness... looking different... feeling different... not seeing loved ones if they're sick... being on contact isolation when Ava's sick (which means being confined to the hospital room, not even walking out in the hall)... being away from home... not getting to play and do things you enjoy... it can be overwhelming at times for any adult, much less a six-year-old.

Thank you for your continued prayer support, that Ava will be able to return home in full health! We pray for her to be cleared of all viruses soon so she can be taken off contact isolation. We pray for God to strengthen and encourage her spirit and to bring rest to her soul. Even with the mentioned "negatives", God always grants a positive to share:

(From Esther's FB):

Day 9: A beautiful Sunday morning with the whole family!
iPad fun with Gwen is always a treat for Ava.


We pray for many more beautiful mornings (and restful nights) for the Lee family, and for these sisters (and little bro-to-be) to enjoy countless treats together for years to come.


Two Videos from Facebook!

video

I can NOT stop laughing at this video. Ava called Santa yesterday and got his voice mail. After leaving a message to Santa, she wanted to tell her daddy about her experience so I recorded her.

Because she tends to act older than her age a lot, sometimes I forget that she's only six. What a great reminder!
‪#‎christmaswonder‬ ‪#‎purejoy‬





video


Day 7: Finally mastering her favorite song! Ava wasn't feeling that great today but she still powered through.
‪#‎day7‬ ‪#‎powerofmusic‬






Saturday, November 29, 2014

Day 8

Ava started having a runny nose today. She tested positive for the rhinovirus again, and test results confirmed that she also has C.diff. So, she was started on some more medication and may remain on contact isolation for a while. We pray for these things to clear quickly. She's feeling more of the painful effects of the mucositis, but was doing a little better after some pain meds and a nap.

Meanwhile, Baby Boy Lee continues to grow and making it harder for mommy to find a comfortable sleeping position. :)

Thanks for your continued prayers for full health and engraftment!

Day 7

It's been a week since transplant. The docs are seeing a little more mucositis develop in Ava's mouth and she seems to be experiencing more of those effects in her GI system as well, evidenced by severe pain when using the restroom. Her appetite is starting to wane a bit, but Ava is forging on.

Ava's diarrhea may be a result of mucositis, but they need to rule out C.diff just in case. (C.diff, or Clostridium difficile, is a bacteria that can cause diarrhea and inflammation of the colon, oftentimes seen in patients taking antibiotics because the meds also wipe out the good flora in the GI system). Ava tested positive for the C.diff antigen, but it's possible to have a false positive so we are waiting to see what further testing reveals. If she does have C.diff, she'll be started on (another) antibiotic to treat that, in addition to the other prophylactic antibiotics she's already getting.

Ava's transfusion of RBCs yesterday went okay overall, though she had a bit of a reaction towards the end again: some flushing and redness of the face for some unknown reason. But we remember that nothing is hidden from God our Father, and we choose to rely on His love and wisdom over medical explanations (even when inquiring minds want to know). We also remember that we are all in a spiritual battle that goes beyond what we see with our eyes. We are thankful for the Holy Spirit and Jesus who intercede on our behalf. May we be like Christ in our dependence upon the Father.

On a positive note, the Lees were able to enjoy making some beautiful music together today! Esther will share that video soon. Thank you for your friendship and support.

Thursday, November 27, 2014

Thankful! (Day 6)

video

Happy Thanksgiving! I am thankful for second chances, Seattle Children's, selfless giving, pumpkin pie, family, and friends old and new.
‪#‎day6‬ ‪#‎thankful‬

Wednesday, November 26, 2014

Day 5:updated

Ava's platelets are low, so she'll be getting a transfusion soon (if it hasn't started yet). She'll also need to get RBCs tomorrow. We pray for no reactions!

Still unclear as to the cause of hives. The diarrhea is most likely from mucositis, but they will rule out C.diff (bacterial) just in case.

Thanks in advance for your prayers!

Update: Ava's platelet transfusion went great! Thank you for praying!

Tuesday, November 25, 2014

Unexplained Hives

Ava is experiencing unexplained hives again (following sharp stomach pains), in addition to diarrhea. Hopefully this isn't related to her cough earlier today or an allergic reaction... thank you for your prayers that Ava will be able to remain healthy despite germs (and allergens) being everywhere!

Day 4

Day 4: Still going strong. Doctors are so happy with the way she is handling everything! We feel those prayers, for sure!


As you can see from Esther's FB post and photo above, Ava is doing well! She ate a decent amount of food today, continuing to astonish the doctors. She had a little incident of bad stomach pains yesterday and hives, which were quickly managed with Benadryl and steroids. However, Ava will take a break from the lipids for a few days to see how things go. If she continues to eat well, maybe she won't even need them! (I don't know if the docs actually said that, but that's my interjection). Ava is willing to walk around and is generally in good spirits.

Ava started coughing a little bit today, which was a bit disconcerting to Mike & Esther. There's always the concern for bacterial/viral infection in the back of their minds. But the doctors aren't too concerned with it; they say that it's common for mucositis to cause a tickle in the throat so we'll see. Ava hasn't shown signs of mucositis inside her mouth, either, so it's hard to know for sure. As long as she doesn't develop any other symptoms like a runny nose or fever, she'll be good.

We know that God is good and faithful, even if Ava wasn't doing as well as she is right now. But we celebrate the answering of your many prayers and give thanks to God for these times. Thank you so much for your love!

Monday, November 24, 2014

Day 3: updated

Day 3: Best friends reunited at last!
In Seattle, it even rains inside.



Update:
Ava seems to be doing pretty well by all accounts. One of the main things they're on the lookout for is mucositis. Mucositis from the chemo and TBI results in sores and inflammation of the stomach and esophageal lining. That's why transplant patients typically need TPN (IV nutrition) because their oral intake is grossly insufficient due to extreme pain from the mucositis. Most transplant patients are feeling the effects of the mucositis by now, unable to eat and screaming in pain. While Ava's appetite is definitely decreased, she is still managing to eat a little. In fact, she amazed the docs by eating three tangerines today, as citrus in particular can be painful to eat. On one hand, it's hard not to wonder how Ava is fairing so well: did she somehow not get the full radiation she was supposed to?? Unlikely. But our human flesh wants to find an explanation, even to entertain worry that something was overlooked. Then our hearts remember our loving God, who is able to do immeasurably more than we ask or think - surely this is His handiwork!...His answer to the many prayers you are lifting up on our behalf. Thank you. Praise be to God!

While we rejoice in these blessings, Mike and Esther are still trying to prepare for what's ahead, knowing how unbearable mucositis can be and how quickly any infection can change things. Today's labs showed that Ava's ANC has indeed gone to zero. Now we are waiting for her counts to go back up. For cord blood transplant, this can take 3-4 weeks, unlike the typical two weeks for bone marrow transplants. At that point, they will do more labs to determine whose cells are being produced: Ava's or her donor's. If it's her donor's cells, this would indicate that the donor cells are engrafting (hooray!) Until then, it's just more waiting...while maintaining good nutrition, minimizing pain and avoiding infection. Easy, right? Nothing is impossible with God! We pray for quick and successful engraftment.

Another prayer request is around transfusions. Apparently it's not uncommon for transplant patients to need almost daily transfusions for low counts. However, with Ava's allergies, this means she would need to be premedicated with steroids for each transfusion. We pray that this little body would receive as few drugs possible, with as little steroids as possible!

Thank you so much for your prayers. You are greatly appreciated.

Sunday, November 23, 2014

Day 2

From Esther's FB:


Day 2: Did this girl really just go through a transplant AND an anaphylactic reaction yesterday? 




Thank you for your patience, as I didn't get the chance to post earlier today. Ava did well and was able to remain in her room overnight and not return to the ICU. Hooray! And as you can see from her photos, this sweet girl has a resilience beyond her size and age.

The thought is that her anaphylaxis yesterday may have been a result of miscommunication when ordering her smoothie. I believe they're investigating that more to be sure, but Ava is scheduled to have lipids again soon, so hopefully everything will go smoothly there. She's otherwise doing well and still sporting that winsome smile! We thank God that Ava was able to bounce back so quickly. Thanks again for your prayer covering!

Saturday, November 22, 2014

Anaphylaxis

Ava just had an anaphylactic reaction... possibly to the lipids? It hasn't been determined just yet.

She had stomach pains and difficulty breathing, but it was hard to assess if it was mucositis and anxiety at first... but she was really working hard to breathe and her oxygen saturation dropped and she eventually vomited. She got the Epi-Pen, she's on steroids, Benadryl, and just finished a one-hour albuterol treatment.

She's resting now and seems to be relatively stable. However, if she continues to need support with breathing, she will need to return to the ICU. Seeing as they just transferred out of the ICU today, it would be nice to not have to return. It's hard to keep moving back and forth and it would be nice to be able to settle into a regular room.

We remember the doctor's words that transplant day itself is relatively uneventful. It's the first month post-transplant that proves the toughest. Ava's been through so much already, it's hard to imagine that she hasn't already been through the tough part, but we keep in mind that it continues to be an uphill battle while we wait for engraftment and pray against infection and GVHD.

Thank you for your intercession. I'll update more as I hear.

Day 1: updated

We have switched over to positive numbers: Day +1!

Thanks for your prayers for Ava. She's still in the ICU where she received her transplant yesterday. She's really sensitive to the things that are happening in her body, which can make her anxious or worried. This in turn causes a rise in her BP and difficulty breathing (but no wheezing), which has happened twice so far. She's otherwise doing great, and she's willing to try and stay positive so that they can leave the ICU. Her appetite's gone down quite a bit, so she will get TPN as needed and will probably get lipids today.

Right now she's experiencing a pretty massive stomach ache. As you can imagine, this can cause anxiety in someone who is more than familiar with anaphylaxis and allergic reactions. It's unclear what is causing her stomach aches, though - thank you for your continued prayers!

Ava's BP has been pretty high, with systolic around 140s with meds. Her pressures can decrease down to low 100's when she's sleeping, but we hope to get her back to much lower pressures even while she's awake!

I'll update more as I hear.

Update:
They believe Ava's stomach pains are due mucositis from the TBI and chemo she had. Overall, Ava has been taking everything like a champ; the docs have been impressed with how well she seems to be doing. Didn't she go through TBI like it was nothing, not even anesthesia? She even walked downstairs to the ICU for her transplant yesterday! I don't think the docs have ever seen any patient walk to the ICU (understandably)! So she hadn't been started on any pain meds because she was doing so well, while most patients are already on regular pain meds by now. So Ava will be started on some pain meds and hopefully that will help.

Ava's getting her lipids right now, and if everything goes smoothly, she'll be able to transfer out of the ICU. Thanks for your prayers!