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Our Happily Ever Avery
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Our Happily Ever Avery

CAR-T Therapy

Too Much Sleep Lands Her in the ER

Too Much Sleep Lands Her in the ER

Making the Best of the Situation

Making the Best of the Situation

No Change with Hypoglycemic Episodes

No Change with Hypoglycemic Episodes

Look Who Now Has Two Front Teeth

Look Who Now Has Two Front Teeth

Latest Hospital Update | Her Poor Little Fingers

Latest Hospital Update | Her Poor Little Fingers

Breaking Down Thiopurines (6-TG)

Breaking Down Thiopurines (6-TG)

Last Night’s ER Visit Became an Admittance

Last Night’s ER Visit Became an Admittance

Preparing for Her Bridging Chemo Schedule

Preparing for Her Bridging Chemo Schedule

Trying to Lower Her MRD: Minimal Residual Disease

Trying to Lower Her MRD: Minimal Residual Disease

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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
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BMT DAY +251 🩸CLINIC DAY🩸 Does it seem lik BMT DAY +251 🩸CLINIC DAY🩸 Does it seem like the last clinic visit was a long time ago? Just me? I’m not sure why it feels like forever ago, but it does. 🤷‍♀️ Anyways, Avery did well at clinic today. It was a good, short visit. No Pentamidine infusions make for quick appointments. Speaking of Pentamidine (anti-pneumonia med), they believe she’ll only need one more infusion and then she’ll be off of it!🙌 She’ll be able to take Bactrim at home instead of these bi-weekly infusions. Also, her Sirolimus (immunosuppressant) levels are looking great so they’re going to start weaning it! As long as she doesn’t have any severe GVHD flare-ups from the wean, she can get off the Sirolimus in 2 weeks! Plus, once she’s off that she can also stop taking her daily anti-fungal and antibiotics. Both of these improvements together could then make for one BIG milestone: HER PORT COMING OUT! We most likely won’t see that happen for a little while longer (at least 2 months), but it’s so great to hear them put a (tentative) date on it happening‼️ All in all, she had a terrific visit and is doing well. We’re so proud of our strong girl!💪 P.S. Peep that hair coming in!! 👀 #oureveravery . . #bonemarrowtransplant #bonemarrowtransplantrecipient #bonemarrow #bethematch #savealife #childhoodcancer #infantileleukemia #babiesgetcancertoo #babieswithcancer #leukemiawarrior #leukemialymphomasociety #leukemiasucks #leukemiafighter #byebyebadblood #fcancer #frogyoucancer #posttransplant #posttransplantlife
Happy Father’s Day to all the great fathers and Happy Father’s Day to all the great fathers and father figures out there! And to those of you who are struggling to put on a smile today, we see you too.💛 #oureveravery . . #dadanddaughter #dadofdaughters #daddaughter #fatherslove #weseeyou #todayisyourday
BMT DAY +246 🎈AVERY’S 20 MONTHS BIRTHDAY🎈 BMT DAY +246 🎈AVERY’S 20 MONTHS BIRTHDAY🎈 No nap all day—still smiling.☺️ In fact, Mom said she slept all night–in her own bed. That’s a big change as well. Typically she wants someone near her while sleeping, but that seems to be changing. And that’s a good thing for all of us because it means more restful sleep for everyone. As for this series of pictures, she was babbling while we sat nearby playing with Ry. The next thing we hear is Avery cracking up laughing.😆 We look over to see what’s so funny and she’s laughing at the caterpillar. 🐛 But it’s the shear joy she’s having, simply playing, that means the most. She’s down to just 4 medicines and they aren’t personality-changers or insomnia inducers. Therefore, we’re able to see and experience more of “Avery without medications.” Here’s hoping we see plenty more of “this” Avery from here on out.🤞 #oureveravery . . #bonemarrowtransplant #bonemarrowtransplantrecipient #bethematch #childhoodcancer #infantileleukemia #babiesgetcancertoo #leukemiawarrior #leukemialymphomasociety #leukemiafighter #byebyebadblood #frogyoucancer #posttransplantlife
BMT DAY +243 As you can see, Avery enjoyed a coup BMT DAY +243 As you can see, Avery enjoyed a couple days in nature. 🏕 Fortunately, even though we reached pretty high temps, there was plenty of shade and a cool breeze. We found pockets of time early in the day and late in the evening to get Avi outside. Of course, we lathered her up in sunblock, made sure she wore her sun hat, used her sun tent on the beach, and put her in a rash guard swimsuit for water play. Well, potential water play. Since she wasn’t able to be immersed in water for most of her life, that’s still something she’s getting used to. But she likes to put her hands in the little splash pool we got her, so that counts for now. 😊 Overall, we’re pleased that her GVHD seems to be staying under control. Her knees were getting pretty thick (the GVHD caused her skin to thicken), but look much better today. Plus, she’s still been in such a great mood! And that’s the best part of it all! #oureveravery . . #toddlerhood #toddlerplaytime #campingwithkids #campingout #campingvibes #campingfun #campingseason #protectyourskin #protectyourskinfromthesun #gvhdawareness #babiesgetcancertoo #bonemarrowtransplant #posttransplant #bonemarrowtransplantrecipient #childhoodcancer #infantileleukemia #leukemiawarrior #leukemiafighter #fcancer #frogyoucancer #posttransplantlife
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Our Happily Ever Avery
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Summary

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