The Latest:

Sophie’s tumor histology reports came back and her official diagnosis is medulloblastoma. All medulloblastomas are grade 4 which indicates it is malignant and aggressive. Though the 5 year survival prognosis is around 67%, kids under 3 are considered infants and have poorer outcomes- usually 30-50% survival after 5 years. We are still investigating why this is so, and what we can do about it. Unfortunately, we have to wait until Sophie passes through a critical healing window from the brain surgery before she can start chemo. In the meantime, her function continues to deteriorate. We’re back to using some of our infant gear like carrier packs (the Ergo), bibs and bath seats. She still tries to do her old tricks like jumping and walking and climbing but now needs a lot of assistance and watching out very closely for her safety. It’s so hard for me to see this decline but luckily Sophie remains in mostly high spirits, giggling, joking and chatting just like her usual self. 🙂

IMG_6717smIMG_6713smIMG_6779bsmSince arriving home we’ve been bombarded with new info, more tests, blood draws, paperwork, research to follow, choices to make, appts to organize, etc etc. Helping someone through cancer treatment is a full time job. We head up to DC on Tuesday to get a port-a-cath surgically placed in one of her main veins. This will allow medication delivery, chemo, and blood draws to be done without needles and pricks. Then while we are up there we start treatment. The first 4 days are oral medications and can be taken at home and the next 4 days are IV medications during which she will be admitted to the hospital. So we will be there over Christmas. Luckily, both kids are young enough to not know which day is the real Christmas so we can celebrate the weekend before. As long as the hospital doesn’t make a big hullabaloo over it being a holiday, they’ll be none the wiser.

With all the things we are now doing that keep us busy and preoccupied and trying to make the kids’ lives as normal and happy as possible, I feel like I haven’t really even had a chance to process what’s going on and the big challenges ahead of us. I feel like I’ve only had a chance to cry for like 2 minutes before I need to pull it together for one reason or another and I want to spend days on end crying. Also, it seems there are some heavy risks and side-effects associated with various treatments that we need to look into. Even with a cancer cure, there’s a possibility Sophie will be mentally and physically disabled (or one or the other) and possibly dependent on us for the rest of her life. That’s all scary to think about but as long as she’s cured that’s fine with me. The thing that worries me the most is that her personality or disposition will somehow change. Sophie’s feisty, adorable, playfulness is what I love the most about her.

IMG_6754bsm IMG_6777sm Here’s Sophie reading a book about BALLS while wearing her BALL pants (she loves balls):IMG_6699sm And here she is considering all her dining options while the steroids she’s on make her as insatiable as the Very Hungry Caterpillar:IMG_6827sm Night-Night, Junie:IMG_6747smIMG_6752sm

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9 thoughts on “The Latest:

  1. Jenna, I thought about messaging you privately but it might be helpful for your friends and family to read this too. Right now, you have no choice but to be in survival mode. You have so many critical decisions you have to make right now, it’s hard to deal with the emotional fall out. I’ve always been the calmest while in the hospital with Lily. I found in the months after our last hospital stay that I had the time to cry, I grappled with depression, panic attacks and night terrors. I’m saying this, not to scare you, but because I think there is an outpouring of support while your child is in treatment but often you need even more support once you are home and are trying to get back to a “normal” life. I found it was the hardest period, personally.

    I hope for the best possible outcome for Sophie, remission and no/minimal long term effects. It’s amazing what children’s bodies can recover from. A year ago, Lily could get her thumb in her mouth, that was it. Now, she’s army crawling, vocalizing, trying to eat by mouth. I know I’ve said it before, but she’s come much further than anyone ever thought she would. I have faith that Sophie will defy the odds, too. I’m so sorry that you have to be in the hospital over Christmas. We’ll be thinking of you all.

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  2. Ugh, Jenna, tears are welling up; I’m doing some of the crying for you. No words can express the absolute sadness this brings to so many; I can only imagine what strength you have to have for her and Lucas when inside you are crumbling. You and Laith and so strong together – but even the strong have their breaking points. Hugs and love to your family.

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  3. Jenna and family, we are all thinking of you and wishing you strength and healing during this challenging time in your baby’s life! My heart aches as I read every word of your blog. God certainly knew what he was doing the day he blessed Sophie with you as her Momma. You are so strong and a rock in your family’s foundation! Prayers and thoughts are with you. Thank you for keeping us all posted!
    Cindy

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  4. Jenna, you are so strong. I admire and love you so much. I am free until the beginning of January. I’d love to meet up or visit you while you are at the hospital. Anything!

    Love, Kristen Hendricks

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  5. Hi! I run a nonprofit in Fredericksburg, VA that supports families in our area facing pediatric cancer. We do not presently service your area but wanted to tell you to look into the EDCD waiver thru Medicaid. It offers a “Personal Attendant” and acts as a primary or secondary health insurance so covers copayments and other costs that your insurance company won’t.
    Email me at info@fairygodmotherproject.org if you need more information! Will be thinking of you and your girl!

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  6. Hi, I saw a feature about your beautiful Sophie that MaxLove’s mom Audra posted on her FB page. My heart goes out to you. I too have a daughter with a brain tumor. Mia just turned three and we are a just over a year into diagnosis. I just felt a need to reach out, say hi and let you know you are not alone. I can see by all the posts how loved your family is and how much support you have. Please know that many people you haven’t even met yet are keeping Sophie in their thoughts and prayers. It’s a club no one wants to be part of and I wish that none of us had to go thru this. Not sure if you have a FB page/group up or not but our FB page is “Mia’s Peeps” if you want to join. Or if you want to “chat” or need anything my email is: lisagurevitz@hotmail.com

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