Madeline’s Story

Site created on February 16, 2019

Madeline was diagnosed with Neuroblastoma in February 2019 at age 3. Sedona was diagnosed in June 2019 at age one with Isolated Hemihypertrophy which puts her at higher risk for developing childhood cancer. This is our story.

How Can You Help?
- Meal Train -
- Donate Blood - Madeline is type A+ (she can accept 0+/- and A+/- but please donate no matter your type if you can!
- If you live far away and still want to help we would love some assistance with extra child care expenses. Please venmo @bethany-cermak
- Send a card or bead of support
- Send a cleaning crew to our house
- Donate to a charity in honor of Madeline

Please note: If you donate through this site, you are supporting and not us directly.

Newest Update

Journal entry by Bethany Cermak

Details of the scans are below, overall impression is that everything is stable and Maddie had gas - haha. Also, have you ever had sciatic nerve pain? This girl constantly has a tumor sitting right on that nerve, I don't know how she does anything with a smile, but she does!

Before her scans Nana (my mom) asked her, "do you know why the doctor is going to take pictures at the hospital?" and she replied very matter of factually "Yep, to check if I still have cancer but I already know that I do because I still get leg cramps." I mentioned this story to her doctor and he said she's right, if this thing does start to grow or shrink, she'll probably be able to tell us before any scans or tests do.

Good News, since we are almost a year since her surgery (how did that happen!) no more scans for 6 months! We will do some blood work and urine tests in 3 months just to keep an eye on things but no sedation! Yay!

MRI Results:

1. Stable appearance of residual right paraspinal/lumbosacral tumor from prior imaging studies. Again seen is intraspinal extension resulting in mass effect on the thecal sac and encroachment on the right greater sciatic foramen around the right sciatic nerve bundle.

2. Stable foci of T2 hyperintense signal with associated enhancement in L4 and L5 vertebral bodies.

3. Limited evaluation of the previously noted low retroperitoneal lymph nodes due to dephasing artifact from gas in adjacent bowel loops on today's MRI. No new retroperitoneal or pelvic lymphadenopathy.

Large right paraspinal mass in the lumbosacral region appears grossly stable compared to MRI 3/24/2020 and 12/6/2019. Exact size measurements are difficult given multi spatial tumor extension, however extraspinal component in the right pelvis at the level of L4 measures approximately 4.5 cm axial images (series 49 image 64) and 9.5 cm on coronal images (series 50 image 34). Mass again extends through the neural foramina into the spinal canal at right L3-4, bilateral L4-5, bilateral L5-S1, and right S1 levels. Mass again encases the right sciatic nerve bundle and encroaches into the right greater sciatic foramen. Within the spinal canal there is mass effect on the thecal sac from L3-S2 unchanged from prior imaging studies.

Again seen are foci of T2 hyperintense signal within the L4 and L5 vertebral bodies with associated enhancement normal signal of remaining axial and appendicular skeleton on all sequences. No other foci of enhancement within the skeleton.

MIBG Results:
Stable MIBG SPECT with abnormal tracer distribution within the bilateral paraspinal (right greater than left) and right pelvic sidewall are primary soft tissue distribution seen previously.

Redemonstrated abnormal uptake near the lumbosacral junction, right greater than left again with abnormal uptake extending inferiorly within the right pelvic sidewall.
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