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!

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

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)

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.

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


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.

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!

Friday, November 21, 2014

Thanks for Praying: updated

Thank you so much for your cover of prayer. From here on out, we start counting up each day.

Ava seems to be having some sort of reaction... she's complaining of a stomach ache and having some difficulty breathing but no wheezing. Thanks for your continued prayers against reactions and infections! We'll keep you posted.

Update: It's not totally clear what's causing Ava's symptoms. It's possible she's reacting to one of the blood pressure meds, so they are switching that and seeing if that helps. (Her BP has been high, around 15o). They wonder if Ava's stomach pains may be causing her anxiety, making her feel short of breath or feeling that it's difficult to breathe when she may not be having true bronchoconstriction. If this is true, it may be difficult to discern when she's really having a serious reaction. Either way, her stomach pains are real so we pray for discernment in knowing how to go about addressing her symptoms. She's also on a number of different meds, which opens the door to a variety of possible side effects. Thanks for your prayers! The Lord continues to lead our way.

Transplant Done!

From Esther's FB page:

DONE!!! Slight reaction toward the end but,
otherwise, beautifully received!
Please pray for the next 30 days
as we wait for engraftment.

Moments away from the transplant!
Happy Transplant Day to Ava!!!!!

Walking to the ICU to get transplant!! Day ZERO!!!!! 
Please please pray for no reactions! 

Day 0!

I can't believe it's finally here... transplant! Also known as her "new birthday". Ava's scheduled for transplant in the ICU at noon (PST), in just one hour!

We remember that the most crucial time is post-transplant, especially the first 30 days. But we will continue to cover this precious girl in prayer for every step of the process, for no reactions, setbacks or infections! Thank you for your faithful prayers.

Thursday, November 20, 2014

TBI Done!

We're so proud of Ava!
We're so grateful for your support!
We're so impressed by Ava's doctors, therapists, and nurses!
We're so blessed by our Lord, Jesus Christ!
Total Body Irradiation is done!

Day -1

Thank you for your prayers. Ava recovered from last night; no more blood in the urine, blood pressure pretty much normal, with no more pain. Praise God!

Ava didn't really want to go through TBI again this morning, but once Mike laid her down, she cooperated the whole way. She's at her very last session of TBI as we speak.

Cyclosporine is going well, and Ava is demonstrating good food intake so she will not need TPN today.

There are so many moving parts and variables to take into account, what with viruses/germs to avoid, all the possible complications, etc. It can be very overwhelming to stop and think about. Thank you for your continued covering of prayer as we head into transplant tomorrow, and for your prayers for God's peace to guard the hearts and minds of the Lee family.

Wednesday, November 19, 2014

Day -2: update #2

Cyclosporine is going okay today and TBI this morning went really well (thank You, Lord! And thank you for your prayers!) It feels like we're barreling toward transplant and it's hard to imagine it's right around the corner.

Please continue to pray for protection against infection. Viral infections are pretty bad to get, seeing as there really is no treatment and with no immune system to fight them off, things can turn pretty quickly. Gwen got a chance to play with Ava yesterday, but Gwen is now sick, so we pray that Ava was not exposed to her germs. Esther is still getting over her cold, so there's always the concern of unseen germs being spread from her as well. Being pregnant doesn't help Esther get over illness quickly, but we pray for God to do so here, as well as to protect Esther against future illness. Please also pray for Mike, who has been carrying the load of caring for Ava. He of course does it with great joy, humility and patient sacrifice, but it can be taxing to get up with her through the night to use the restroom and be the primary caregiver without much break at this point. Please pray for stamina, rest and health.

Thank you so much!

Update #1 (6pm):
Ava did really well with both TBI sessions today. Her hemoglobin's a little low, so she's getting pre-treated for red blood cells right now. We pray for no reaction! Thanks for standing with us.

Update #2 (12:15am):
Ava was pre-treated for her blood transfusion and was getting RBCs over 4 hours to minimize any possible reaction. Towards the end, she started reacting to it and was having really bad stomach pains in addition to blood in the urine and high blood pressure. Her pains were significantly decreased with morphine and her pressure went down as well. Still figuring out why she was having blood in her urine; thanks for your continued prayers!!



Smile, though your heart is aching
Smile, even though it’s breaking
When there are clouds in the sky
you’ll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You’ll see the sun come shining through
for you

Light up your face with gladness
Hide every trace of sadness Although a tear may be ever so near
That’s the time you must keep on trying
Smile what’s the use of crying
You’ll find that life is still worthwhile
If you’ll just smile

In the real world, I wouldn't suggest this to anyone. But I've seen the effect my sadness has had on Ava. And we have found ourselves in a place where the tears have pushed past even the strongest resolve we have had to keep them away. This is the crazy cancer world that we live in where our weaknesses must be hidden so that she can rely on our strength to find her own. 

It's a hard place to be in but we have been doing fairly well especially with the incomprehensible amount of support we have received from our community at home and our new friends in Seattle. These past few days, however, proved to be too much as I had to stay away from Ava due to a slight cold. When I finally saw her small, fragile body laying in that big cold hospital room, I couldn't contain my grief. How did she go through 2 days of TBI already without me by her side? How scared she must have been to enter that room and lay quietly still with no one nearby to caress her head and whisper that everything was going to be okay.

It is Day Negative 3, which means we are two days into Total Body Irradiation and two days away from Ava having her immune system completely ablated to the point of no return. TBI is sometimes explained as bringing someone to the brink of death before being able to infuse life again through new cells. I wrestle with the guilt of knowing what we are asking Ava to do as we lay her on the table to receive the full wrath of radiation while the rest of the team scurries away to avoid being exposed to these harmful rays for even a second too long. Then the wait begins outside the room as we watch the sign blink on and off, "X-Ray In Use." It is infuriating and agonizing to send your child off to a place where even you must not go. Yet, she goes. With full trust in our decision, she goes.

There are no words. There are no words. There are no words.

We have met several obstacles in our short time here with Ava reacting to many of her medications. Her body is very weak with all that she has been through. Yet she finds it in herself to smile when I walk through that hospital door. She smiles when the music therapist gives her a drum to play. She smiles when Gwen does a funny dance move. She smiles when her daddy tells her a joke. Of course there are days she cries, but there are many days she shows us that she is capable of experiencing and appreciating joy. And if she can smile through this ordeal than, God help me, so can I. 

We humbly ask for your prayers. They have a profound effect on us that moves us deeply and fortifies us from within. 

1) Ava will reach Day Zero (Transplant Day) this Friday. She will be receiving her cord blood in the ICU due to her severe allergies. It is the hope of everyone that she does not react to these life giving cells. Please pray alongside us that the transplant will go smoothly.

2) I, Esther, need many prayers to keep a positive outlook. I don't want to discourage Ava in any way. I want to infuse her with hope and joy during her time of desperate need. I can only do this with a strength that is beyond what I have. Please pray that I would smile in front of my sweet girl and give her every confidence that God is with us.

3) Please pray against infection. Without an immune system, even the common cold can be fatal. Ava will have many obstacles to overcome with just the transplant itself. Any viral or bacterial illness could be detrimental to her success. We pray that she would be protected from the bacteria/viruses that are already in her body and ones that may be introduced through the people caring for her.

4) Strength for Mike and I as we head into a time of uncertainty and fear. We are actually very weak and confess that we could not carry on without God's grace and ever compassionate heart toward us.

We thank God that He still gives us things to laugh about and that He has provided friends to share our unspeakable pain with. We don't take you for granted. We thank God for each of you everyday.

Tuesday, November 18, 2014

Day -3

Just a quick update:

Ava's TBI went really well this morning. However, afterwards she received cyclosporine for the first time and reacted, so they stopped it and gave her a full dose of Benadryl. She was more out of it then, and it was much harder for her to willingly go for her second session of TBI today. Even so, they said she was doing great and following instructions. She's done with radiation for today, but I'm not sure how Ava's doing. (I imagine she must at least be glad to be done for the day!)

Meanwhile, cyclosporine is/was still being given, but very slowly throughout the day with Benadryl around the clock.

I'll update more later.

Monday, November 17, 2014

Day -4

Is it just me, or does it not seem possible that Ava is going to get a transplant this Friday??? I'm counting down on these blog posts, but the numbers don't seem like they can be that low...!

Ava's first session of TBI went really well; she was brave and good about laying there as needed. And, more importantly, she's willing to do it again! It's not easy for a little girl to lay still for 40 minutes. I dare say many adults would struggle to do the same. Ava should be in the midst of her second TBI session now.

We're glad for the opportunity to go without anesthesia, and most thankful for all of your love, support and prayers. Just 6 more sessions of TBI to go... let them be as smooth as this morning!

From Esther's FB:

Tell me, girl. How do you stay so positive?

Sunday, November 16, 2014

Day -5: Updated

Ava continues to do well. She hasn't received the lipids yet today, so we'll let you know how it goes when she does.

TBI starts tomorrow; they will still try having Ava do it without any anesthesia, though they may keep her NPO the first time just in case. Once she starts TBI, there's no turning back; it's onward to transplant. This is because TBI is wiping out her immune system; it will not recover after TBI, so she will need the transplant to have immunity. With chemo, her immune system can recover after treatment, but not with TBI.

The cord blood arrived frozen and in good condition.

Esther may be coming down with something, so your prayers for health/quick recovery are appreciated, in addition to Ava not catching anything. The next several days will be pretty grueling, and it will be difficult for the Lee family if they aren't able to be together. We pray for no viruses present in Ava to cause any problems. Thank you!

Ava received her transfusion of lipids, and everything went well, praise God!

Tomorrow, Ava will have two sessions of TBI. She will be transported via cabulance to a different facility for radiation. Her sessions are at 8am and at 2pm. They will try seeing if Ava can be still for each 40 min session without anesthesia, so Ava will be NPO overnight (no eating/drinking) for the first TBI session. If all goes well, she can resume eating/drinking afterwards.

As always, thanks for your prayers!

Saturday, November 15, 2014

Still On Track (Day -6): Updated

Ava's MRI came back normal. Her LP results are still pending, but Infectious Disease says it's unlikely her seizure was from infection. Her seizure may be a result of chemo, perhaps the fludarabine. In hindsight, Ava may have had a seizure a year and a half ago, and may be a little more prone to seizures. So although the fludarabine isn't known to cause seizures, Ava may have been more likely to seize with it than other patients. Looking back, Ava may have had a seizure episode a couple of months ago while on nelarabine, but because she doesn't display any muscle rigidity or other more obvious symptoms, Mike & Esther didn't consider that a possibility. Ava will have an EEG sometime to examine her brain activity.

Ava has otherwise been doing okay today. She just woke up for the first time since her procedures. She did get chemo today, so she is still on schedule with transplant.

Tomorrow, Ava will get TPN (total parenteral nutrition) to see if she's able to tolerate it. TPN is nutrition given via IV, often used when people are unable to eat for prolonged periods (e.g. comatose patients). Post-transplant patients oftentimes need TPN to maintain adequate nutrition. It is the rare patient who is able to get that through normal eating and drinking after transplant. So, Ava will likely be started on TPN after transplant, but because the lipids contain some soy and egg in it, they want to give her a trial of lipids tomorrow to make sure she doesn't have a reaction. (They feel that the soy/egg present is somehow in a form that may not be an issue for Ava, but want to verify that). We would appreciate your prayers for no more reactions!

Another prayer request: one of the transplant meds that Ava will need to take to prevent rejection/GVHD (graft vs. host disease) is cyclosporine. Cyclosporine has the potential to cause seizures, and she would need to take this for a month or so. Ava will also be on anti-seizure medication.

Please pray that she would not have any more seizures, especially during TBI this coming week, and that she would be able to tolerate the lipids tomorrow and post-transplant.

Thank you so much for your faithful prayers and support!


I forgot to mention that Ava was started on Keppra, an anti-seizure medication. One of the side effects of Keppra is possible mood changes, including (but not limited to): suicidal thoughts, new/worse depression, agitation...

About 1 in 500 people taking Keppra have suicidal thoughts/thoughts about dying, but I think you know that those numbers don't mean much if you're the 1 person! It's hard to imagine how any potential mood changes will manifest in Ava. Thanks for your prayers that she will experience none of these.

No Intracranial Bleeding

Thankfully, CT scans showed no signs of bleeding. There appears to be something in her sinus, but it could be congestion or possibly an infection. Ava is awake and talking this morning!

Ava will have an MRI and LP (lumbar puncture) done today. We will keep you updated.

From Esther

We have had some bad nights since Ava's diagnosis but tonight has left me shaken. After briefly falling asleep, I awoke to Ava vomiting profusely. I went to get the nurse and when we came back together, we noticed Ava's eyes were deviated to the side and she did not respond to anyone's call for attention. My sweet girl who loves me with everything she's got wouldn't look in my direction when I called and would not respond to my voice. It is a very broken feeling when you know you are helpless to save your child from suffering. Ava is resting peacefully in the ICU now while a myriad of tests are being preformed to find the cause of her seizure. Thank you for your prayers. They cover us especially when we are too weak to cry out for ourselves. I love my girl. Thank you for loving her too.

Friday, November 14, 2014

Bad Seizure

Ava had a really bad seizure... they don't know why. It was bedtime, but Ava wasn't sleeping, then started vomiting. Her eyes were kind of glassed over staring, not responding to anyone. They called a code and transferred her to ICU and they're going to do a CT scan to see if there was any bleeding in the brain. They are baffled as to why she had a seizure.

It is unclear if chemo will continue tomorrow. If Ava was getting TBI (radiation) at the time of her seizure, they wouldn't be able to stop it in the middle of therapy, so it's hard not to wonder what next week will look like.

The cord blood has already arrived, so transplant really can't be delayed, either. (There's a certain window of time to use it).

Thank you so much for your fervent prayers.

Quick Update (Day -7)

Just found out that Ava has been on schedule with chemo today; her liver function tests were still elevated, but decreased from yesterday (now 400 from 500), so they felt comfortable enough to give her the cytoxin today. In addition, Ava was premedicated before getting the same two drugs she received yesterday and hasn't had any reaction. Thank You, Lord! And thank you all for your prayers. She has one more day of chemo tomorrow.

Ava has been feeling a bit tired but is otherwise doing well. I believe Mike or Esther will update more later tonight.

Thursday, November 13, 2014

Updates from Facebook

Some posts from Facebook:

November 11th:
Tonight is the last night before going into the hospital to begin the transplant process. I held Ava close and relished having my baby in my arms. The thought of subjecting her to all that is to come makes my insides turn, so I choose to focus on how grateful I am for moments like these when we can lay in the stillness of the night and appreciate life to the fullest. 
‪#‎daynegative10‬ ‪#‎prayforava‬

November 12th:
Holding Ava down while she gets injections will never ever get easier. Xolair (anti Ige medication) administered. Now praying for no reaction.

November 13th:
On the way to get an ultrasound. Ava's liver function test came back very high so they are holding chemo until they can find out the cause. Please pray it is nothing serious and that we can stay on schedule for transplant.

November 13th:
The doctors decided to go ahead with the chemo fludarabine and watch her liver function levels before administering cytoxin tomorrow. (Cytoxin is drug that is known to bother the liver.)

Ava had a reaction to either the fludarabine or her anti-fungal medicine micofungin. She received benedryl and her hives have gone down considerably. Neither drugs are known to cause allergic reactions so we are reminded of Ava's special circumstance battling both cancer and severe allergies due to her IgE issues. Thank you for your prayers that things will stay on schedule despite the various setbacks this morning.

Started Chemo (Day -8)

The doctors decided to continue with chemo today (fludarabine). It's tomorrow's chemo drug (cytoxin) they are concerned about, so if her liver function tests are trending down tomorrow, they will probably proceed with the cytoxin. Her liver ultrasound came back normal, so they are still unclear as to what caused it.

However, Ava developed a reaction today. In addition to the fludarabine, she also got an antifungal. She broke out in huge hives all over, including her head. She's doing better after getting Benadryl, but as Ava has had both of these drugs before, this was unexpected. She is back in isolation since she also started sneezing and having a runny nose. Not sure if it's the rhinovirus, but they will give her another nasal wash just in case.

The sobering piece of walking with Christ is knowing that we are not exempt from trial and suffering, just as Christ endured all kinds of suffering for mankind, though He was without sin. Yet the humbling piece of such a journey is knowing that God's love for us is not at all diminished in our suffering: "He who did not spare His own Son, but gave Him up for us all - how will He not also, along with Him, graciously give us all things?" (Romans 8:32)

Indeed, Mike & Esther have seen the faithfulness of God's hand throughout these near 9 months, and even in the midst of pain and struggle, they know that He is good. In our flesh, we would prefer to proclaim His goodness from a "happier" place, but our spirits know that He is good regardless of circumstance.

In Esther's words on FB:

"We are reminded of Ava's special circumstance battling both cancer and severe allergies due to her IgE issues. Thank you for your prayers that things will stay on schedule despite the various setbacks this morning."
Thank you!

Increased Liver Function Test

Ava was scheduled to start chemo at 10am (PST), however her labs this morning revealed elevated liver enzymes. When they first got her baseline levels a week ago, she was just a little elevated (70, with normal being 60). This morning her level was 500.

So, there is a delay right now as they are trying to figure out why her levels are up. One of the chemo agents she's supposed to get tomorrow is pretty liver toxic, so they don't want to administer that if Ava is showing signs of liver toxicity now. Ava is otherwise doing well and feeling great.

They are redrawing labs to make sure it wasn't some type of lab error, and Ava is also getting an ultrasound to make sure there isn't an obstruction somewhere. Ava's elevated levels seem to point to the Xolair since she just got that yesterday. But there isn't any data/reports on liver toxicity with Xolair... doesn't mean it couldn't happen; it looks like studies haven't been done to specifically evaluate that (in addition to the lack of reports of such adverse effects), so we will see. Thank you for joining us in praying for no liver toxicity and no delay in transplant. Ultimately, we continue to trust in God's wisdom and timing above our own. Not according to our will, but according to His.

It's been a difficult morning. A sweet lady that Mike & Esther met at the RMH is here for her daughter's treatment. They found out this morning that her daughter passed away yesterday. In addition, the person in the hospital room next door must be struggling to keep up the fight, as they are lots of people filing in and coming out with tears. It's a grim reminder of just how vicious this battle is. Please say a prayer for these families as well, that God might bring comfort, grace and healing. Pray against discouragement in spirit, but to continue walking by faith and not by sight. Thank you so much.

Wednesday, November 12, 2014

On Schedule - Going Inpatient!

Many of you have probably been wondering how Ava is doing; thank you for your thoughts, love and prayers. It's been a little more difficult to connect over the phone with the different time zones/schedules. But we are grateful for the ability to still stay connected with you all.

There is a lot to update. Thanks for your patience.

Ava is doing really well. She is happy, playing and has been enjoying her time pre-transplant. She woke up this morning shocked and excited to see the sun out! (She has caught on to Seattle weather pretty quickly). *wink*

The baseline tests they did on Ava all came back normal: heart, lungs, kidney and liver functions; dental looks good. Praise the Lord! She did test positive for rhinovirus, as well as cytomegalovirus (CMV), which is not ideal. The presence of any virus is a concern, since she will essentially have her immune system obliterated, and it's crucial to have the cord blood graft into her system without complications. These viruses could cause pneumonia - which any of us could fight off in our healthy state, but not someone who has no immune system. In an immunocompromised person, pneumonia could be fatal. Thankfully, a recent nasal wash showed no presence of the rhinovirus (so hopefully that remains true through transplant) but the CMV doesn't go away and will be something to keep an eye on throughout the transplant & follow up. Ava also has HSV, which they knew... this is the cause of her eczema herpeticum outbreaks. Because Ava had a recent outbreak, they plan to keep her on Acyclovir (antiviral) for a full year instead of the normal month or so (?) for transplant patients.

Her bone marrow biopsy came back, revealing MRD positive with 0.007% blasts. Of the 3 tests performed, 2 revealed no disease, but the most specific one showed 0.007%. It is lower than her previous result of 0.03%, so the nelarabine last round did something. Still, being MRD negative going into transplant has been associated with the best outcomes. The doctors shared these statistics:

  • There is a 75% success rate (meaning no relapse) in patients who are MRD negative going into transplant. (I don't know how long the follow-up period was here: meaning, 75% success rate in the first how many months/years?)
  • This number drops to 40-50% success rate in patients who are MRD positive going into transplant.
The way they understand it, it's not the amount of disease/blasts present, but whether disease is present at all. While this is disappointing, we continue to trust in God, who is not bound by any statistic or probability, but holds the future in His hands. May He continue to grant grace, peace and faith for the journey.

So, consent forms were signed and we are forging on to transplant. Ava is on track with the schedule they outlined for her. Transplant is scheduled for next Friday, Nov 21. Today (Tuesday) is considered Day -10 (negative 10), counting down to her transplant day. Here is the rundown:

Tomorrow (Wed, Nov 12; Day -9): Ava will be admitted to Seattle Children's to receive an injection of Xolair to decrease IgE levels (which are related to the body's allergy response). They hope this will preempt/minimize any potential allergic reactions Ava may have to treatment.
Thu - Sat (Nov 13-15; Days -8,7,6): Ava starts high-level chemo for 3 days, through Saturday.
Sun (Nov 16; Day -5): day of "rest" - no treatment, but remaining in the hospital
Mon-Thu (Nov 17-20; Days -4,3,2,1): Four days of total body irradiation (TBI), twice daily. TBI will take place at a different location from Seattle Children's, so she will be transported via "cabulance" back and forth. They normally put children like Ava under general anesthesia for each TBI procedure, but they are trying to go without anesthesia. More info on that below.
Fri (Nov 21; Day 0): Transplant day!

So, Ava gets admitted tomorrow and will remain in the hospital through transplant and beyond, about 6 weeks assuming everything goes well. The only thing on the agenda tomorrow is getting the Xolair injection. They have never pre-treated someone with Xolair before transplant. So, they are dedicating tomorrow to the injection alone as well as to observe Ava and make sure she's doing okay. Note that Xolair is only used in patients with IgE levels under 1000; it hasn't shown efficacy in levels higher than that. Ava has had hyperelevated levels of IgE; the previous level they obtained was 22,000! But most recently her level dropped to 800, so they want to try using Xolair to see if this could further decrease her IgE levels and prepare her body to not mount an allergic response to treatment.

To elaborate on the TBI, it's imperative that the patient remains still during the 40 min procedure, which is why children are generally put under anesthesia. However, I found out that Ava recently had some type of reaction to anesthesia last week, I believe during her biopsy. Her oxygen saturation dropped to 80% and developed a wheeze about an hour into the procedure. This is the first time she has reacted to anesthesia. Her face/arms were a bit puffy afterwards, but she otherwise recovered quickly. Since Ava will get TBI twice a day for 4 days, this would mean getting anesthesia 8 separate times, not to mention all the hours she would need to be NPO before each procedure (having nothing to eat/drink). We need this little girl to get as much nutrition as she can, especially after chemo! Because of these above considerations, they are going to try having Ava get TBI without any anesthesia. She even had a trial run to test out laying still. Although Ava can lay still now, who knows how she will do post-chemo. Will she be able to lay still if she's feeling nauseous or otherwise unwell from chemo? She will have some protection placed over her lungs during TBI, but if she moves, her protection could be compromised. Please pray for successful TBI without anesthesia, and adequate protection of her lungs.

The doctors are very concerned about Ava; they have never been so concerned about a patient reacting to various steps of treatment. They haven't seen someone react as severely as Ava has. They want to be wise and cautious in preparing the cord blood itself as well. The cord blood is frozen in DMSO, which could potentially cause a reaction. An agent that they would use to "wash" the cord blood could also cause a reaction, so they are debating which agent to use. Of course, the physical delivery/transport of the cord blood itself is also important. We don't want to see any punctures/tears in the bag (or any damage to the cord blood itself). Please pray for God's hand to guide each step of the transplant process. We trust Him as the Great Physician. May He heal Ava fully, in whatever manner He chooses. 

You may recall that there is a study being done in Seattle, where patients are randomized to receive (or not receive) "expanded" stem cells during the crucial first month post-transplant. The thought is that receiving these extra cells would help boost their immune system during the critical time of waiting for the transplant to graft while avoiding infection. Ava was randomized, but was not selected to be in the group that receives this trial procedure. This was really disappointing to everyone, but we also remember that God's ways are higher than our ways, and His wisdom is so far beyond us. May we rest in His wisdom, for our "wisdom" is foolishness. We trust that He has what's best in mind.

The good thing is that the cord blood Ava will receive is pretty big - it has about twice the volume that a typical cord blood has. The doctors already felt that one cord blood would be sufficient for Ava's little body, so this extra volume is an added bonus.

An interesting tidbit: Ava's blood type is O+. The cord blood is B+. After transplant, Ava's blood type will become B+!

As you can imagine, there are many things to pray for. In summary, please pray for:

  • no allergic reaction throughout transplant/treatment
  • Ava to tolerate chemo well
  • Ava to be able to remain still during all 8 sessions of TBI to avoid anesthesia
  • successful transplant/grafting
  • NO infection/complications
  • Gwen - that she would feel adequately cared for when so much of these months has been focused on Ava
  • Esther - I understand that her belly continues to grow! Please pray for safe development/delivery of Baby Boy Lee
  • health for the whole Lee family, so no one will carry any new germs to infect Ava
  • for the Lee family to be filled with God's peace and Sabbath rest on a most difficult journey; for courage and peace for Ava, the valiant warrior.
  • May God continue to receive all glory and praise! He is good, He is good, He is good.
You all have played no small part on this journey. Thanks are not adequate to express the gratitude that Mike & Esther feel as they have seen you come alongside them, offering your prayers, love, support and all KINDS of amazing, tangible help and blessing. Thank you, thank you, a thousand thank-you's!

Life is an adventure, whether we want it to be or not. As we embark on this next rollercoaster ride, we trust God to go before us, hem us in from behind, meet us in the ups, meet us in the valley-lows, and cheer us on to the finish line, whenever that may be and however that may look. We trust Him to put a song in our hearts when we haven't a song to sing. We trust Him to bring His peace that transcends all understanding. Please pray for continued trust... our flesh is frail and weak. If we had to rely on our own ability to have faith, we'd be in deep waters. But Jesus is the author of our faith, the reason for our hope. It is impossible to imagine walking this road without Him. Let us walk by faith and not by sight.

Continue to come along with us on our journey. We welcome your companionship on this ride. It was Tuesday when I first started this post earlier in the day, but now it is Wednesday: T minus 9!