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Our Happily Ever Avery
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Our Ever Avery
Oh hey! I'm Avery!

I can’t exactly say I’m happy to be here, or that I’m delighted that we’re meeting this way. BUT, I can say THANK YOU for all of your love and support in this journey.

Quick Summary of My Journey:

  • Diagnosed with Pre B-Cell Acute Lymphoblastic Leukemia on 12/16/2020 at the age of 7 weeks
  • Remission achieved on 1/24/2021
  • Relapsed on 4/5
  • CAR-T Therapy on 4/19
  • Remission achieved again on 8/6
  • BMT on 10/15/2021 {Rebirth Day}

Follow our hashtag: #oureveravery

Blog and Social Media run by “Ma” (grandma) with Mom overseeing information

How you can help from home

Categories

  • Bone Marrow Transplant
  • CAR-T Therapy
  • Chemo
  • Diagnosis
  • Happy News
  • Home Life

Resources + Info

  • Cancer Vocabulary
  • Types of Childhood Cancer
  • Symptoms of Childhood Cancer
  • Additional Resources
  • How You Can Help
  • FAQs
Today is #WorldCancerResearchDay so it's a great Today is #WorldCancerResearchDay so it's a great time to talk about the 4% allotted to #childhoodcancer 4%. We decided to put that into every day terms by showing you what that means in reference to this around us in our daily life. You'll see how the slides give you a small glimpse at what 4% would look like with your coffee, pizza, favorite show, and even in relation to the population of the U.S. Basically, 4% would only save the people of Pennsylvania. Congrats⁉ Why 4% you may ask? First, childhood cancer is considered 𝘳𝘢𝘳𝘦. (rare disease is defined as a disease or condition that affects less than 200,000 people in the U.S.) But, it is also the leading cause of death by disease in children in the U.S. So... 🤷‍♀️ Anyways, other possible reasons include the low ROI for big pharma and the fact that pediatric cancers aren't taken as seriously because kids are 𝙢𝙤𝙧𝙚 𝙧𝙚𝙨𝙞𝙡𝙞𝙚𝙣𝙩. These are just a few possibilities. (@musicbeatscancerorg was an incredible resource here BTW). No matter the reason, there needs to be more done. Our children deserve more. They deserve better. This is why we continue to advocate not only for Avery (there also needs to be a better understanding of the long-term effects of childhood cancer treatment for survivors) but all childhood cancer warriors. 🎗 #oureveravery . . #ChildhoodCancerAwareness #morethan4 #pediatriccancer #pediatriccancerawareness #kidswithcancer #gogold #childhoodcancersucks #childhoodcancerwarrior #cancersucks #thisischildhoodcancer #kidsgetcancertoo #babiesgetcancertoo #childhoodcanceradvocate #leukemiawarrior #childhoodleukemia #childhoodcancerawarenessmonth #childhoodcancersurvivor #childhoodcancermonth #cancersurvivor #cancerfree #childhoodcanceradvocate
This picture was taken the day before Avery was di This picture was taken the day before Avery was diagnosed. She was a happy, active baby. The only cause for concern? Two small swollen lymph nodes behind her ear/on her neck. Oh, and she was eating 1/2 oz less with each bottle. She LOVED eating so it was noticeable. Her pediatrician initially found nothing wrong. Avery wasn’t presenting with any other symptoms. But, at the last minute, she thought Avery looked a little pale and decided to run a CBC panel. That blood draw changed everything. Within hours we were given the devastating news that Avery had Leukemia. It would take another couple of days to get the official subtype diagnosis: Acute Lymphoblastic Leukemia. We were fortunate that Avery’s cancer was found early. Even when she relapsed, we discovered it early. Vigilance paid off for Avery. Today’s #childhoodcancerawareness slides give common symptoms to some of the most diagnosed pediatric cancers. I firmly believe, “Knowledge is power.”🎗️ #oureveravery . . #morethan4 #pediatriccancer #pediatriccancerawareness #kidswithcancer #gogold #childhoodcancersucks #childhoodcancerwarrior #cancersucks #thisischildhoodcancer #kidsgetcancertoo #babiesgetcancertoo #childhoodcanceradvocate #leukemiasucks #leukemiaawareness #leukemiawarrior #fightleukemia #childhoodleukemia #allleukemia #acutelymphoblasticleukemia #childhoodcancerawarenessmonth #childhoodcancersurvivor #childhoodcancermonth
BMT DAY +342 We’re 2️⃣3️⃣ days out from BMT DAY +342 We’re 2️⃣3️⃣ days out from Avery’s 1st Rebirth Day and she is (very much) still battling GVHD. Her skin actually looked great… and then the steroids stopped this weekend. Yesterday her face was turning red with rash and she wasn’t able to even nap. The itching was so intense that she was just miserable. Today we sent pictures of the flare up (covering her entire body) to the doctors and they started the oral steroids back up. She’ll take them for another week and they’ll check her at her monthly clinic appointment next week. It got 𝘵𝘩𝘢𝘵 bad 𝘵𝘩𝘢𝘵 fast. (The second slide shows a few spots magnified to help you see the extent of her rash). If you read through today’s #childhoodcancerawareness slides, you’ll learn that 2️⃣ out of every 3️⃣ survivors will develop at least one chronic health condition. The life-saving treatments our kids take to beat cancer are the same treatments that cause toxic side effects. Signing papers that have a long list of side effects ranging from organ failure, to infertility, to death isn’t an easy task. It weighs heavy on your mind as you desperately find a way to save your baby. Again, THIS is why we need more research! We need to find treatments better adapted to our kids, and, hopefully, with less toxic side effects.☢️ #oureveravery . . #morethan4 #childhoodcancerawarenessmonth #kidswithcancer #gogold #childhoodcancersucks #childcancerwarriors #childhoodcancerwarrior #cancercommunity #cancersucks #thisischildhoodcancer #chemosucks #kidsgetcancertoo #babiesgetcancertoo #childhoodcanceradvocate #leukemiasucks #leukemiawarrior #fightleukemia #childhoodleukemia #cancerpickedthewrongkid #cancersurvivor #cancerfree
BMT DAY +341 ❓DOES SHE TALK YET❓ We’re ask BMT DAY +341 ❓DOES SHE TALK YET❓ We’re asked this question often. Before this one, it was also, “Is she walking yet.” When I describe Avery to those who’ve never met her, I explain that even though she’s about to be 2 (in 2️⃣7️⃣ days), she definitely “presents” more like a one year old. Her Rebirth Day seems more accurate when you think about her age. Before her bone made transplant, she was saying words, eating well, and standing on her own. She was hitting every developmental milestone even while undergoing chemo. BMT really set things back developmentally. It was incredibly tough for her, as she fought all the side effects, to stay caught up on cognitive skills. But, she’s getting there! As we’ve all seen in recent weeks, once she figured out she could walk, she also decided it was time to RUN. And it’s one of her favorite things to do now. She’s beginning to eat more solid foods, drinks from a cup (when in the mood), helps us get her dressed, expresses distaste for things, and says a few simple words. But, there’s no doubt that the chemo and treatments she’s endured over her first year of life have delayed some of her cognitive abilities. We often try to reiterate that “cancer” doesn’t stop when the treatment does. Avery still has a lot of work to do. We’ll continue to walk beside her as she keeps thriving. You can look at our girl and see that there’s no stopping her! 💪 #oureveravery . . . . #morethan4 #pediatriccancer #childhoodcancerawareness #pediatriccancerawareness #kidswithcancer #gogold #childhoodcancersurvivor #childhoodcancersucks #childhoodcancermonth #childhoodcancerwarrior #cancercommunity #cancersucks #thisischildhoodcancer #kidsgetcancertoo #babiesgetcancertoo #childhoodcanceradvocate #fightlikeakid #leukemiasucks #leukemiaawareness #childhoodcancerawarenessmonth #leukemiawarrior #fightleukemia #childhoodleukemia #allleukemia #childhoodcancersupport #cancerpickedthewrongkid #noonefightsalone
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Summary

  • Diagnosed
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