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Ava Sophia Leukemia Warrior Fund

$16,086 of $20,000 goal

Raised by 243 people in 6 months
Created December 13, 2018
Ava has suffered a 5th Leukemic relapse.  Her leukemia is a beast and has spread to her bone marrow which is now 76% full of cancer. Ava needs all of the prayers we can give. In fact, Ava needs a miracle! I have had so many people reach out to me to ask how they can help. Well here is how! Let us help Melissa and Chuck and their family enjoy this holiday season with Ava without any financial worries. They are spending multiple days a week at Hopkins now. The gas, the food, the parking, special treats for Ava, etc. all add up so quickly. Also, the new year is about to begin which means a new deductible will have to be met. Finances are the last thing they should have to think about right now. If you would like, please make a donation to the family that will go directly to them to help with all of their needs and medical bills. Every little bit helps and no donation is too small! Please feel free to share as well. Thank you in advance for your love, your support, and most of all your prayers!
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Redeemed...

Because the PICU team was able to stabilize Ava's electrolytes and we were able to wean Ava down on the oxygen she was receiving, everyone agreed she was stable enough to move back up to the 11th floor and that this was also in her best interest since this is where Ava is most comfortable. Yesterday evening, just before shift change, Ava was rolled back up to the oncology floor where her favorite nurse Emily was waiting for her and for the first time all day, she was calm and peaceful.

The steroids and immunosuppressive drugs seem to be working for the diarrhea as that is thankfully, subsiding, however, Ava's liver numbers are all continuing to rise. Later today, Ava will be taken downstairs in her hospital bed for a more in depth ultrasound with elastography to look at her liver since a biopsy is out of the question. The drug Ava has been taking for 3 months now for her fungal infection was changed for a few days since that can hurt the liver, while another drug to help the liver has been started. Please pray we have some answers and that Ava's liver numbers will begin to decrease over the weekend.

Right now every day is tenuous and so we are limiting visitors and taking things hour by hour because with Ava, things can change in a hot second. I will say, I see God's Hand all around us, I really do. And even though I'm having a hard time reading my Bible and even praying at times, I know God is working and we are not alone.

This past trip to the PICU was nothing short of a miracle. Every single nurse, doctor, resident or fellow who came into our room truly seemed to care. Instead of calling Ava, "friend" as she had been called quite often during other PICU visits, everyone called her by name or they listened to the nicknames and words we used for Ava and called her by those. "Friend" is a way to detach yourself and treat someone as a patient, calling someone by name makes them a person.

I watched as the nurses gently tucked blankets around Ava when she was cold, listened as they comforted and encouraged her when she was scared and I watched them fight for Ava just as our amazing nurses on 11 fought to learn dialysis for Ava in order to keep her on the oncology floor. In the midst of such pain, I continue to witness beautiful acts of love for my Ava girl and they are a precious gift to my hurting heart.

What had initially been a horrible experience in the PICU, God redeemed and so my prayer today is that He will also redeem and restore all of the hurt and pain we are experiencing now, as only He can do.

Thank you for the continued prayers and for the flood of pictures of Ava on Facebook recently. I love looking at photos of Ava I have never seen!

Much Love and God Bless,

Melissa and Ava~

John 16:33

33 “I have told you these things, so that in Me, you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
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Chuck and I met with the rounding BMT team yesterday and here is what we know so far.

Ava has GVHD in her lower intestines and bowels which is why she has had prolific diarrhea for over a week now. In addition to that, her stomach and esophagus are very inflamed. Her liver is another story.

After her bilirubin levels began to rise quickly and her skin began to darken there was concern as to what was going on since her liver has been stable the last few months. The ultrasound yesterday revealed her liver has reversal of flow; (VOD) but only on one side, while the other side is still functioning. Because she has reversal of flow, which means the fluids are backing up in the veins, she also has something called esophageal varices; which is a condition that is seen more in adults with cirrhosis of the liver due to alcoholism or other diseases. Neither of these two conditions are good for Ava.

The oncologists believe the esophageal varices were caused months ago when Ava developed VOD and that the problem with her liver now is also Graft vs. Host disease. To be sure what it is, a biopsy is needed, however because Ava is in such a delicate spot right now, a biopsy of her liver is out of the question.

Our only options for trying to calm down Ava's symptoms and give her some relief from the constant diarrhea and possibly help her liver is to start high dose steroids and also immunosuppressive drugs; which we began last night. Starting these drugs also cause their own problems and since Ava already has a mountain of obstacles in front of her, well, these drugs; although helpful, may also hurt her.

To let Ava suffer as she has been is not an option though so, Chuck and I decided to move forward and do the best we can for Ava with what we have been given. Currently, Ava is awake for just an hour or two at a time and when she is awake, her thirst is unquenchable. She is constantly asking for sips of Sprite or SanaPIno; (Blood Orange Sanpelligrino) or chips of ice and opens her mouth like a little baby bird waiting to be fed. The liquid doesn't even make it to her stomach and spills out a few minutes later and the cycle starts all over with requests for more sips and chips. Chuck and I are devastated and heartbroken. There is no telling if these medications will begin working in time to calm the liver, but we have to try.

The next few days will be very telling and although Dr. Brown prepared me for the very worst yesterday; (because I made him promise years ago to always shoot straight with me and he always has) we are clinging to the very tiniest flicker of hope that maybe Ava will pull through this. Only God knows and only God can heal Ava at this point and healing is what we are praying for.

I don't have much more to say. I'm not reading or returning Facebook messages at this time as I am focusing solely on caring for Ava. I did pick up a book this morning that a fellow Jacksonville Elementary Parent sent me and only read a few pages before I burst into tears and I'll leave you with that:

"No matter how tragic your circumstances, your life is not a tragedy. It is a love story. And in your love story, when you think all the lights have gone out, one light still shines."
(excerpt taken from the book, One Light Still Shines by Marie Monville)

Those few sentences spoke volume to me. Ava and I have had our own love story for over 12 years now. It's a story of pain and hurt, healing and hope, tragedy and triumph, but it is just that, an incredible love story between a mother and her daughter and despite all the hurt we are all suffering now, love still remains.

Much Love and God Bless,

Melissa and Ava~
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Surgery is over, all is well and Ava is sleeping peacefully while the fluid from her lung continues to drain. I will try and update tomorrow after I know if she will or will not be going to the OR for the scopes.

Thank you so much for the prayers.

Much Love and God Bless,

One Tired Momma and One Brave Warrior
Aka: Melissa and Ava~
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Prayers NOW, Please...

Last night, Ava began to act very agitated and I had trouble keeping her oxygen levels steady with just blow by oxygen. Today, her heart rate and respirations have been higher and an ultrasound revealed her left lung is full of fluid and debris. From the images, it appears the fluid is not clear and is either blood or infection.

Because Ava is now requiring a nasal cannula with higher levels of oxygen, it looks as if Ava will be having surgery sometime this evening in her PICU room to drain her left lung. Whatever is removed will then be sent for testing in hopes of knowing if and what Ava needs to be treated for. Tomorrow, if she is stable, Ava will be an add-on for her upper and lower GI scopes and biopsies.

Please pray right now. Pray for Ava's protection and that this procedure will allow her to be more comfortable this evening as she sleeps. Please pray we have some answers from the fluid that is drained. Pray for the surgeon and team doing the procedure and please continue to pray for Ava's complete healing.

I will say in spite of the pure awfulness of the situation, God is with us and has provided us with an amazing PICU team of nurses, doctors and nurse practitioners this weekend. Although I'm very concerned, I also have peace.

Much Love and God Bless,

Melissa and Ava~

God is Greater Than Highs and Lows
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$16,086 of $20,000 goal

Raised by 243 people in 6 months
Created December 13, 2018
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SP
$36
Stacy Peskin
8 days ago
SW
$50
Scott Williams
14 days ago
$54
Camila Constantino
27 days ago
PC
$100
Pete and Roxanne Constantino
27 days ago
CK
$30
carli knight
28 days ago
KM
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Kimberly McGown
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JM
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