Many people ask... what were the symptoms? How did you know? How did it all start?
So let's take it back to the beginning, the very beginning...
Two weeks before diagnosis...
Monday: We celebrated A2D opening and having its first successful day by eating out. The girls were silly and playing when we got home. Avery climbed up on the couch, sat on the arm and fell completely backwards landing on her back. She cried for a couple minutes and then stopped. She seemed fine and we prayed.
Tuesday: My mom calls me and says she really thinks I should take Avery in because she is breathing funny. I spend the night in the ER with Avery as they check everything out. There were no broken bones, they didn't hear or see anything in her lungs. They just thought she was in so much pain from falling that her breathing was showing it. They sent me home saying she might have a mild concussion and to give her Tylenol.
Wednesday: Avery doesn't really want to walk, refuses to climb up the stairs but has a pretty typical day.
Thursday: Avery starts throwing up. I bring her back to the ER thinking it has something to do with her head injury. They check everything out and say it's a viral bug and not to worry as they didn't think it was connected to the head trauma at all. They said it was a weird coincidence.
Friday: Avery is quiet but we have a normal day. We went to Sever's Corn Festival and had a great family day despite Avery melting down at the end.
Saturday: Avery wakes up with a giant (a little smaller than a dime) black spot on her tongue. We take her into our pediatrician and they said it was just a blood blister. She probably bit her tongue overnight and that's how it was healing. Sent us home and said she'll be fine.
Sunday/Monday: Avery seems a little off but over all normal.
Tuesday: She spikes a fever. I take her into the doctor again. They diagnose her with a bad ear infection. I feel awful for taking her to the fall festival and think that's why she melted down so bad at the end! I felt like the doctors probably thought I was crazy for being at the ER or Doctor 4 times in less than 2 weeks.
Wednesday-Sunday: She seems fine but has started crawling the majority of the time instead of walking. She complained about her back hurting and again I thought it was because she had fallen. On Sunday she really just wanted to cuddle and I started noticing bruises. I found this weird as she hadn't really moved in two weeks, she just wanted to cuddle. Right before nap, I noticed she had a funny rash on her arm. I gave her bynidril and put her to sleep. When she woke up her rash had grown, but she wasn't itching so I decided to watch it. When Alex got home from work he noticed her rash and bruises... he almost never notices these things so I knew it was getting bad. Avery had developed 17 bruises in one day and they were the deep dark green and purple bruises. The rash had also spread from one arm to a leg, to her trunk to the other leg. I put her down to bed early because she was so tired. When she fell asleep, Alex asked if we should call the doctor because the rash was spreading. I did and thought it may be an allergic reaction to the new meds she was on for her ear infection. The after hours nurse called back and told us we needed to have her checked out at the ER. I called my mom and told her she had to come with as I was pretty sure the doctors would think I was CRAZY for coming in yet AGAIN. I woke up Avery, picked up my mom and we decided to go to Children's instead of our local ER. When we got there they said it was going to be a minimum of a 5 hour wait but that we HAD to be seen. I thought it was crazy that they were so fussy over a silly purple rash but also knew allergic reactions could be bad. My mom and I decided to wait as the sweet nurse said most ER's were at the same wait time and that it didn't matter where we were seen but we needed to be seen that night. Avery tried so hard to sleep on my mom and myself. I felt like every time we got her to really fall asleep they would come check on her and take more vitals. We finally got to get a room around 4:30 am. The doctor came in, saw the rash, listened to our very long story and told me he wanted to get blood work to get a better picture. Within an hour he was back and we knew by the look on his face he didn't have great news. He told us that Avery's blood work didn't look like they wanted and that typically when they see this type of blood work the child has Leukemia. He had called the on call oncologist to confirm. We asked if there was any possibility it could be anything else and he said less than a 1% chance. I literally thanked him and he looked so shocked. Mom and I instantly started praying and speaking life and healing over Avery. I called Alex and told him to pack a bag for me and Avery and to pray. I didn't want him or I to use words but lift Avery and the situation up in prayer. By 6:30 am we were being admitted to the PICU and starting treatment with a blood transfusion and high fluids. By the time Alex got Amberlynn dropped off with my dad and to the hospital, we were told that it definitely was Leukemia and that we should be prepared to be in the hospital a minimum of two weeks but probably more like 30 days for this first round of treatment. But we were also told that the transfusion and fluids had already helped so much that we would be moved to the oncology floor later that day. From the first moment the word Leukemia was uttered, I knew God had different plans. I knew that Avery was healed because Jesus died on the cross and already bore this sickness. I knew she was a miracle and would live a long and happy life. We jumped in the deep end head first and knew that our floatation device of Jesus Christ would never let us drown.
Fast forward a day and she got a port placed and started chemo on her 18 month birthday. We were released from the hospital 6 days later to begin out patient treatment.
So to answer your questions...
What were the symptoms?
She was tired, complained of back aches, having a hard time walking, getting sick often, a few weeks of weird stuff and eventually the rash that gave it away. If you know Amberlynn and Avery at all... they do EVERY thing together. They get sick and better at the same time, so when Avery was getting ear infections or a lingering sinus infection that she just couldn't get rid of, this mama's red flags were already going off.
How did we know?
The blood test told all. We were told we were lucky (we say blessed) to catch it early and that it's not easy to diagnose.
How did it start?
We were reassured to know that this type of Leukemia grows quickly, in a matter of days to weeks. So when we started the two week journey of 'what in the world is going on' - is probably very true to when things started.
Avery and God have proven the doctors wrong at EVERY step of the way and we are excited to tell you more about God's hand in this journey.
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