Jordan’s Journey with a Brain Tumor

September 29, 1998 - Jordan is back from surgery!

September 29, 1998 - Jordan is back from surgery!

 

(Written September 3, 2008)

Jordan was born February 5, 1998 in Kirkland, WA.  At just over 6 months of age we started struggling with him being cranky. Was he teething? The crankiness soon turned to not sleeping well, not wanting to sit up anymore (loss of developmental milestones), apparent weight loss, weakness (he’d lay his head against mine when I’d hold him up to my shoulder), some vomiting, and holding his head at a tilt. A good friend finally agreed that Jordan looked sick. On Sept. 24th, we took him to our pediatrician and gave him our laundry list of concerns. I remember vividly when the physical exam was over and the doc stood Jordan up on the examing table: Jordan looked at himself in the mirror and cocked his little head to the side like he so frequently did. With that, the doc said we needed to get his head looked at. That was the beginning of everything. We were supposed to join friends at a Mariners game (in the Kingdome!) that evening but had to cancel in order to take Jordan to Children’s – which ended up being put off to the morning since it was after-hours on a Friday evening by then. By the grace of God, my folks already had arranged to visit – arriving in the morning. They met us at Children’s in Seattle just prior to Jordan being called back for his CAT scan. Thankfully, this gave something for our almost 3 year old daughter to do during the chaos.

Once the scan was complete, we went back to the waiting room, but were just barely getting situated when someone came out of the radiology doors and said our pediatrician was on the phone and wanted to talk to us. I held Jordan, and I made my husband take the call. I just couldn’t do it. In my gut, I already knew.

That day, we met the neurosurgery team and oncologist (Dr. Ellenbogen & Dr. Geyer). We saw the scans (an MRI was performed later in the day) and were told that Jordan had a 5cm tumor in the posterior fossa of his brain thought to be an ependymoma, that he was very sick, would need to be admitted for I.V. steroids to decrease swelling on his brain, and then would go home the next day so we could attempt to fatten him up a little bit for brain surgery that would be 4 days later. The surgery was urgent but they estimated that Jordan was so weak that he’d never make it through the surgery if done right away. So after a night in the hospital, we took our little guy home for a couple precious days. It was too bad that by now he was feeling so rotten (and the steriods didn’t help the crankiness a bit!) that all we could do was hold him, feed him (steroids did increase this desire!), pray, and think way too much.

Come Tuesday morning, September 29th, Jordan began what was expected to be a 5-7 day hospital stay, including a craniotomy. Now some quick notes: Posterior fossa craniotomy and C-1 laminectomy was performed 9/29. Dx: Choroid Plexus Carcinoma – 5 cm across growing into cerebellum. Gross total resection. Complications included vocal cord paralysis (resulting in tracheostomy for 19 months), dysphagia (g-tube in place for over 10 years now), progressive dilation of ventricular system with shunt placement, bacteremia, and sodium wasting. Chemotherapy began after 21 days in ICU; protocol CCG 9921, Regimen A, NOS (including Vincristine, Cyclophosphamide, Etoposide, & Cisplatin); delivered 10/98 – 4/99.

Not only was the chemo very hard on his little body, he had this extra opening for bacteria to be introduced at – his trach. Our placement within the hospital was always on either a medical or surgical floor because it was easier for them to float a nurse down to give chemo than to send someone up to Oncology who could care for his trach needs 24/7. 

The trach greatly complicated discharge, and only after his first Halloween, Thanksgiving, Christmas & New Year’s were past did he get to come home – a day before his 1st birthday (Feb. 5th). He was home (ideally) until the 8th, but went back in for j/g-tube placement on the 6th. It was absolutely amazing to have him home – even with 24 hour nursing inside our thousand square foot home. We celebrated his 1st birthday 3 different times; at church with about 50 people, at home with extended family, and then again with those who’d cared so lovingly for him once he was back at the hospital.

Chemo was completed in April and we were oh so close to going home, when a chest x-ray (he got frequent pneumonias and was on ventilatory support via a Bi-Pap machine when he was weak with low counts) revealed a broken humerous bone in his upper arm. Further x-rays revealed another fracture in his femur… The oncologists now talked with us about the possibility that Jordan’s cancer had spread to his bones. A bone scan was ordered while we packed up all his things from his hospital home. What a tumultous time! The end result: super-low calcium that caused his bones to be brittle. (Best guess on the fractures is diaper changes and other minor movements.)

First follow-up scan 7/29/99 showed tumor recurrence. Repeat craniotomy and shunt revision, 95% of tumor removed. Cranial nerve damage resulting in left facial palsy. 10/7/99 – 11/24/99 Proton Beam therapy at Loma Linda University Medical Center in So. Cal. Fractionated proton XRT to approximately 55.8 CGE cobalt gray equivalents to 2 lesions in 31 fractions over 47 elapsed days. 31 treatments with anesthesia.

We were blessed with my family living on 90 minutes away from this facility and my husband was able to work remotely (tele-commuting). Two friends came down for a week each to give Ashley (4 by now) a little something different to do.

Scan in Feb. 2000 questionable. Appeared to be radiation necrosis in cerebellum.

May 2000 scan – tumor recurrence with metastasis. No more treatment available. We were assigned a Paliative Care nurse (basically, hospice) and told Jordan had 6-9 months left – he wouldn’t even see his 3rd b’day. Despite his young age, it was permitted that we take a Make-a-Wish trip to Orlando in July. Lots of prayer and a miracle later, a scan on 8/4/2000 changed everything once again. Oncologist Dr. Jim Olson called with the news that “according to report, there is no evidence of disease”. Tumor FREE! Wow! Time to party. Jordan has had stable scans ever since.

Jordan has an older sister who traveled all of this with us (Ashley, nearly 13), and a younger sister who only knows life with the deficits (Rebekah, 6).

Jordan’s cognitive and physical deficits are wide and varied. His balance is significantly affected and he uses a walker for independent mobility, or can hold an adult hand and get around pretty well. He wears bilateral ankle AFOs.

He has profound hearing loss in his left ear, high frequency loss in the right. He suffered a corneal abrasion during a radiation treatment and now has decreased vision in his left eye.

Jordan has oral aversion and an unorganized swallow which has him exclusively tube-fed. (His swallow is improving though.)

Thankfully, after nearly 9 years in diapers, he learned to use the toilet independently. Hallelujah!

Jordan will be starting 5th grade at a local public school where he spends half his time in mainstream class and the other half in intensive support. His math skills are very low. He spells like a champ. He receives OT, PT, and speech therapy through school. His fine motor skills are a challenge and using a pencil is very difficult for him – so we’re working on the laptop. He has slow processing and his IQ is in the 70s. We are thankful for the verbal communication that he has – almost completely intelligible. He doesn’t like going to school right now (nor did he for the last 6 weeks of last year), and that’s quite stressful.

The coping? Jordan does fairly well. It’s one of those “What he doesn’t know, doesn’t hurt him” kind of things. He doesn’t seem to realize at this point that he’s so different. He wants to run fast “like Dash” from Incredibles. He has few friends, which is actually one area he has started to complain about. His sisters are certainly social enough to give him the idea of what’s possible, but he has his own (strong) opinion of what his friends should do when they are together which proves to be a bit difficult. The friends he does have are from our church, and typically are younger than him.

Our family is doing very well. It has been a long road, to be sure, but we are such a stronger family unit for it. Our biggest bump came after the birth of our youngest and I was hospitalized with bipolar disorder – not anything I’d bargained for! But we have learned what is most important to us – our faith and family – and we cherish both. The problem with that is that it tends to also be isolating. We put a high priority on our family time, so our adult friendships suffer (our family can’t do many of the things others do due to the physical limitations, and we don’t ‘match up’ the same as our friends even with the same age kids). My husband and my biggest struggles currently (besides Jordan’s processing, DDD, and school) are friendships. After all these years, where do we fit? We’re starting in with Special Olympics in the fall and I hope to meet some other parents who ‘get it’.

We just saw neuro-oncology last week and Jordan’s doctor finally said – It’s been 10 years since diagnosis, I don’t think we need to keep doing these scans. Yikes! That’s scary in and of itself. And, following a DEXA scan, learned his bone density is lower than it should be. It’s always something, but we continually learn that God is bigger than it all and He will provide.

5 Comments (+add yours?)

  1. Kay Kole Leary
    Sep 04, 2008 @ 12:57:07

    Thanks for the link to your blog. I know how hard it is to keep telling the story over and over and this certainly does the job! You have been through a lot! Dr. Ellenbogen and Dr. Geyer were our doctors as well. Reading the posts from other folks on the email list, I thank our lucky stars over and over for them. They are outstanding!
    I hope you get some answers about the fatigue thing Jordan’s got going on.
    Amanda made it through the first day of high school, but was WAY tired this morning. She went, but I wonder about tomorrow, if she can keep it up.
    I hope you have a good experience with the Special Olympics folks. I can’t imagine that it will be anything other than wonderful.

    Take care,
    Kay

    Reply

  2. danielle (bitzer) Harnberry
    Sep 27, 2008 @ 15:14:01

    Hi Stephanie,
    I saw your link through facebook. I don’t remember hearing jordans full story before now. I want to let you know how much it helps me to hear your journey. I now have 3 girls. Kayla you may remember will be 7 in december. Jacqueline (jac jac) was born May 9th 2007 and Alexa (lexi) born May 5th, 2008. Jac has yet to be diagnosed developmental disabilities; they are pretty severe and we have spent a lot of time at childrens. Jac is in PT and OT through little red school house in lynnwood; we have seen improvements and are encouraged but not having a diagnosis is frustrating. I have been searching for anywhere to fit in, my husband and I are dealing with the same feeling you expressed of friendships. Its wonderful to see your family in pictures and to see how far Jordan has come since I was with him in the nursery and preschool. Thank you for sharing your journey.
    In Him,
    Danielle

    Reply

  3. Katrina
    Feb 01, 2011 @ 22:27:12

    Stephanie, I had not seen this until tonight. I love how you wrote this, and I am amazed by your little man. Your family is an inspiration, and even on our toughest days, we have not encountered anything like this. I love seeing God’s hands through all of this. I hope some day you are able to write a book to help inspire others.

    Reply

  4. Laurie
    Aug 03, 2011 @ 23:48:13

    Stephanie, I saw what you posted on Kathi’s wall and decided to read it too. I had no idea of the details of what Jordan and your whole family have gone through. It’s exciting to see how far Jordan has come 🙂 Thank you for sharing and for your transparency. It is very inspiring.
    Bless you and your family!

    Reply

  5. Gina
    Aug 04, 2011 @ 06:50:34

    Reading this brought me back to that time and how through your difficult journey I was blessed to have met you! Typing this through blurry eyes! Your words always seem to touch the depth of my soul! Thank you for continuing to share your incredible Faith! Your example is truly incredible! Although we don’t connect often anymore, you and the family hold an extra special place in my heart! Love you!! xoxoxo!

    Reply

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