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!

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.

‪#‎dayzero‬ ‪#‎godissogood‬

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! 

‪#‎teamavabright‬ ‪#‎forbrighterdays‬ ‪#‎DAYZERO‬

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.

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.

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

Smile

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.

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.

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?

‪#‎firstdayradiation‬ ‪#‎daynegative4‬