Going on 15

Hi Everyone-

On Friday 4/24 Kevin and Ava headed to Hopkins for her monthly IVIg and labs. Her oncologist discussed the need for an additional bone marrow aspiration on May 8th. She seemed to handle the news well. Besides that everything went well and she was back by early afternoon.

We took advantage of the nice weather and went on a hike on the trail in our neighborhood. After we were able to get some Italian ice from Carmen’s Italian Ice. In the evening Ava started to get a pretty bad headache. We weren’t sure if she was dehydrated or she hadn’t eaten enough. After checking her temperature we felt it was okay to give her some Tylenol and put her to bed.

Then on Sunday when I went to wake her up for mass she complained of her head still hurting. Then she started complaining that she felt very nauseous. Poor girl sat through the streaming of mass with her eyes closed and a bucket in her lap. We once again took her temperature and gave her Tylenol. I was starting to get nervous something might be up and sent an email to her oncologist. Dr. Molina wrote us back right away and told us that migraines are a common side effect of IVIg. He told us to continue giving Tylenol as needed and keep him posted. She felt fine by mid afternoon.

We all breathed a sigh relief once we heard back from Dr. Molina and her headache improved. I’m not sure I can accurately describe the level of PTSD a cancer parent has and all things that ran through my mind. When she mentions not feeling well the worry is immense. I wish I could say I don’t worry, but that would be a lie. The only thing I do more than worry is pray.

On May 8th she will have her next BMA and we would so appreciate all the prayers we could get. Earlier this week Dr. Molina let us know that she still has no B-cells. While that is very encouraging we’re still waiting for her clear Next Gen Sequencing results. Since January these test have shown an obnoxious number of leukemia cells. 6 per million or something. The doctors are pretty sure they’re either dead leukemia cells, or DNA markers that will never go away, but also never develop into leukemia, or possibly leukemia that the CAR-T has yet to get rid of. They’ve assured us that as of now it’s nothing to worry about, but if they were to increase we’d possibly need to move to transplant. So we’re getting a 6 weeks check and praying they’ve gone down or at least stayed the same. They wanted to do it May 1st, but we asked that she be allowed to enjoy her birthday.

On May 4th Ava will turn 15. Quarantine is most definitely not how we’d planned to celebrate her birthday, but we’ll make due. It would be much easier to celebrate her birthday if we could go out and live life. That’s all she truly wants, some fun experiences that make the fight worth it. Another lesson that cancer has taught me is that things don’t make everything better when all you want is to be healthy and carefree. That realization has made gift shopping so much harder. Regardless we’ve got some special meals and birthday surprises planned.

Please indulge me as I share what I’ve learned about my daughter this past year and who she is as she turns 15. Her likes and dislikes. First and foremost, she is a fighter. Ava has a level of maturity I hope to one day have. She’s gotten through this year with such faith and for that I am both proud and grateful. She’s kind and loving. Somehow she can’t stand drama, but can be so dramatic. She’s a true introvert, but once she lets you in and gets to know you she’s a complete chatterbox. Sometimes I think she was born in the wrong century because her taste are so not 2020. Her favorite songs are Cool it Now by New Edition, Manic Monday by The Bangles, and anything from the Mama Mia soundtrack. She loves I Love Lucy, The Golden Girls, The Office, The Backyardigans and most especially The Simpsons. She’s a true night owl, but has no problem getting up for school. She adores Wesley, but can’t wait to get a cat. She’s the best big sister ever, but also loves bugging Kohen and Ellie. She’s athletic and competitive, but also happy being a couch potato. She’s not at all scared to speak her mind and throw shade, but hates to disappoint us. She absolutely gives some of the best advice I’ve heard, but is also so young for her age. She enjoys a good comic book/graphic novel and watching Teen Titans Go. She’s a great cook with a very mature palette, but appreciates a good bowl of Top Ramen. She hates crafts, bugs, birds, and the sound of people chewing. All in all she’s amazing and absolutely necessary in this world! She’s got big dreams and I have no doubt given the opportunity she’ll make them all come true.

We’re having a drive by parade on Monday at 4 pm. If you’d like to come and help us celebrate our amazing fighter please send me a message so I can give you the details. As always we welcome and appreciate your prayers. We hope you’re all staying healthy and making the best of this quarantine situation!

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