AvasLeukemiaFightFund

AML Treatment Cycle #5, Day 17 Update.

This is what count recovery looks like.

Blood transfusion #15 today. Platelet transfusion #17 yesterday. She now gets Benadryl pre-transfusion to prevent any reactions.

Please donate blood or platelets if you can!

AML Treatment Cycle #5, Day 12 Update.

Tomorrow is Ava’s 14th birthday and she’s less than thrilled to be spending it in the hospital. All she wants is to be out of here and to go shopping for clothes. She’s been wearing pajamas for over five months and doesn’t have a lot of clothes that fit her. She’s actually grown and gained some weight through this process.

I wish this cycle could be as peaceful as this photo looks. The truth is, it’s been rough. The chemo has hit Ava hard with flu like symptoms from Day 1. She’s never comfortable and it’s been hard to sleep- day and night. As a result, her anxiety has increased. Lots of crying that she wants to go home. Heart palpitations. EKG that was normal.

The chemo schedule this cycle was weird. She had 4 doses of the high dose cyterabine which infused over three hours. It was 2x/day. And then two chemo shots. Days 1 and 2 (or 2.5 in this case) and then same thing on Days 8 and 9. And now we wait for whatever weird effects to arise on top of the already brutal flu like symptoms. The period after the chemo is always the hardest. Every admission has been different. Who knows what this one will throw at us.

She came into this admission with lower counts than in the past. She’s already had two blood transfusions and one platelet transfusion. Who knows how many more. We’re both over the hospital. I can’t wait to walk out of here one last time and for Ava to ring the bell. I tear up every time I think about it.

From Chariss on 7/18/27:

(See link for post and Video)

AML Treatment Cycle #4, Day 27 Update

Warning: This video may be difficult to watch. But this is the hard reality of what Ava’s been going through. This is what Rigors looks like. Uncontrollable shaking and teeth chattering with a rising fever. This started yesterday immediately after the platelet transfusion was complete and went on for 20 minutes. We (the nurse and I) assumed this was a reaction related to the transfusion since it happened so soon after completion. The nurses immediately drew blood and sent the platelet bag and tubing to the lab for testing. They also took a urine sample for testing.

She has experienced this before during the 1st and 2nd admissions and it was determined to be an allergic reaction to an antibiotic commonly used with AML patients when they spike a fever. It is scary. And we quickly discovered during the first admission that the only thing that stops it is IV Benadryl. Yesterday the nurse had to call in the doctor before proceeding. He had to do an exam and I had to explain the history to him before he would agree to give the IV Benadryl. All while the Rigors were going on and Ava’s begging for Benadryl because she knows it will stop. Then again at 1:40 am, she got up to go to the bathroom and the Rigors started again along with a fever of 103. At that time the Rigors calmed after a few minutes, but she still received IV Benadryl and IV Tylenol.

As of now, some of the lab tests have come back while others are waiting for pathology and probably won’t be reviewed until Monday. The tests that have come back don’t show an issue with the platelets. She did have more gum bleeding this morning when brushing her teeth. Usually they immediately transfuse platelets when that happens. But because we’re waiting on lab results, they’re holding off for now.

We are so grateful to everyone who has sent us gifts, Venmo, DoorDash, prayers, all the things. Please continue to pray for strength and healing as this is so rough. 🙏🏻

After a bit of a break at home, we’re settling back in at UC Davis for AML treatment cycle #2.  This treatment cycle will be a little less intense than the first, consisting of 8 days of chemo twice a day. The first cycle was 10 days. And the Day 6 chemo (which was a bit rough) from the first cycle is not included in this one.

Yesterday was a long day with blood draw and doctor’s appointment in the pediatric infusion clinic first thing in the morning. And then straight over to the children’s surgery center at the main hospital for the lumbar puncture (LP) and bone marrow biopsy before being admitted. These test results will show how the leukemia is responding to treatment. Fingers crossed she does not develop the migraines that she did after the first LP. 

Today she received a Joy Jar which is full of random things. Which definitely brought some joy to her today. She is tired and grumpy and having a hard time adjusting back to the hospital. She has an appetite, but nothing sounds good. So, being able to order her favorite foods from Door Dash is the best thing ever!!! And water doesn’t taste good, so we’re trying lemonade and different things to add flavor to the water.

Please keep us both in your prayers as we continue on this journey! 🙏🏻