Donna’s Day: Learning Hope

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A year ago, my then 29 month old son was diagnosed with a PNET (Primal Neuroectodermal Tumor) in his brain stem, and it extended down, tentacle-like, into his spinal cord. He was given a 40% chance of survival. Very little of the tumor was removed, as it was so embedded within crucial parts of his brain and spine.

It was about this time I found some fellow bloggers who’d participated in a St. Baldrick‘s event to raise awareness and donations toward pediatric brain cancer-and in honor of a lovely sprite of a girl taken too soon by brain cancer, Donna.

Through their writing, I learned of Mary Tyler Mom’s blog, and Donna’s Cancer Story. I didn’t read Donna’s Cancer Story for many months. It was always there, waiting patiently for me to be ready. I was afraid of it, because I knew how it ended, and because it was my story, my son’s story.

I began following Mary Tyler Mom’s blog and Facebook, and I learned of Donna’s Good Things. I found strength through Mary Tyler Mom’s ability to continue on after experiencing such tragedy.

Today is Donna’s Day. It is a day meant for us in the pediatric cancer community to raise our voices and awareness for a much under-researched disease that is the number one killer of children over the age of one.

According to Pediatric Genome Project :
“Cancer is still the leading cause of death from disease among U.S. children over one year of age. Cancer kills more children than cystic fibrosis, muscular dystrophy, AIDS, asthma and juvenile diabetes combined.”

Few cancer research organizations dedicate enough of their donations to pediactric cancer research. St. Baldrick’s is the only organization that donates all of their funds to ped cancer research. Besides using more of their funds for solicitation than for research, The American Cancer Society only allocates 1/2 cent of every dollar they do dedicate to research on ped cancer.

There are St. Baldrick’s events nationwide, and several coming up in my city, New Orleans. Check out the link here.

Show up or stay home, shave or don’t shave, but you can always help by clicking the donate button. Anything helps. Don’t feel like because you may not be able to donate a lot you shouldn’t. A little adds up to a lot.

My son, Robot Boy, is recovering. We are in a place Mary Tyler Mom has titled Scarred Acres:

“Scarred Acres, full of children finished with their treatment, but marked in a hundred different ways by their cancer. Some will live in Scarred Acres the rest of their lives.”

We are working hard, RB is working hardest of all, to rehabilitate and hopefully-one day-in the far or near future, we might move from Scarred Acres.

Reading Donna’s Cancer Story has taught me the importance of choosing hope. We are making future plans. They may be castles in the sky, but one day my strong superhero Robot Boy might turn them into bricks and mortar.

I’d like to leave you with this link to a sad yet heart-lightening video of Donna’s joyful moments.

Donna’s Joy Montage

We’ve Not Reached a Stalemate

“All the world’s a stage, and I’ve been given the part of Job.” – Me to one of my friends yesterday after sharing the results of a recent opthamologist’s appointment.

It all started in September or October 2009, near the end of my pregnancy. I started noticing an odd problem I’d not previously experienced, double vision. Not only was there double vision, my eyes were visibly turning inward, and I had no control over my eyes’ movement.

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1/31/13 at the opthamologist’s office, after my eyes were dilated. I couldn’t see anything I was doing. Surprised I actually got the pic.

I told my OB/GYN, and we hoped it was a temporary problem that would correct itself, like so many other strange conditions that occur during pregnancy. For the rest of my pregnancy, I tolerated the double vision. After RB was born, I experienced severe carpal tunnel syndrome and swelling in my hands and wrists, so severe that I could hardly bend my fingers. I used most of my Rx pain meds for the pain in my hands more than the pain from childbirth. The eye condition continued, and I lived with it, assuming it would go away eventually like the hand swelling and other transient effects of bearing a child.

By summer of 2010, the ailment hadn’t improved. Driving at night was becoming impossible, and I kept one eye closed or covered most of the time. With the urging of many friends and family members, I made an appointment with an opthamologist. I wanted to see the surgeon who’d performed my Lasik surgery in 2005, but he didn’t have any appointments available. I went to one of his associates. She examined my eyes and explained the condition is more commonly a pediatric malady, for which I’d have to see a pediatric opthamologist.

It was my first visit to CHNOLA, long before RB’s intrusive alien interloper took up residence in his brain. The doctor I saw explained my ailment as intermittent esotropia (AAPOS http://www.aapos.org/terms/conditions/48).

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Photo c/o The Eye Specialists Center (http://eyespecialistscenter.com/detection-treatments/strabismus-amblyopia/esotropia.html)

What the diagnosis basically means is that my eyes turn inward because of a weakness in the muscles that control my eyes. For good measure, a CT scan was conducted and showed only a small polyp in my sinus cavity. Hoping treating the polyp would help resolve the esotropia, the sinus problem was treated. And, in a week or so, the esotropia disappeared. Yay! Thank goodness that was all over. . .

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Marty Feldman, Igor, in Mel Brooks’s classic Young Frankenstein. I’ve been likened to Igor, lovingly, over the past few years.

 Unfortunately, it wasn’t all over. Only a day after my follow-up appointment with the opthamologist at CHNOLA, the esotropia returned. Well, it isn’t that bad, I thought. I can live with it. I have more important things to worry about. Besides, there were two solutions to the esotropia problem: 1) Prism glasses which cost $500+ and are not covered by my insurance or 2) Surgery.

I ignored the problem. I drove with one eye closed. I watched TV with one eye closed. I did just about everything with one eye closed. I stopped making eye contact with people. But to me, my daily routine wasn’t effected that much.

Fastforward to late 2011, RB starts getting sick all the time. Here’s a brief rundown for those of you who are just joining us. (You can read more about Robot Boy  here.)We’re at his pediatrician’s office once a week. He’s admitted for pneumonia in December. By January 2012, he stops walking and starts suffering dizzy spells that cause him to fall down. We’re still at the pediatrician weekly. March 3 2012, he isn’t breathing. We come to the ER at CHNOLA.

Esotropia becomes a non-issue. We embark on an epic journey that if written could only have been penned by Homer, or perhaps more appropriately, Dante. We spend nearly a year in-patient through RB’s treatments, tests, scans, infections, and changes in feeding, fluids, and medications. (We’re still in-patient, by the way, but we do have a pending date of discharge.)

November 29 2012, I finally take the advice my aunt gave me two years prior and visit a rheumatologist. Since childhood, I’ve experienced odd symptoms and been diagnosed with everything from IBS to juvenile arthritis to osteoporosis. My body is hurting. I can barely function, and I know the time is drawing near that I will be home with my disabled son. I know I will have to be at my best to be the best caretaker for him. I make a list of diagnoses, tests and their results, and my symptoms. The doctor goes over my papers and says, “Fibromyalgia.”

I’d suspected the diagnosis, as I’m familiar with the symptoms, and I fit every damn last one. He prescribes me meds, gives me encouraging words about RB, and sends me on my way. I take the initiative to be serious about my health. I start eating better and exercising again. I start doing yoga again, every day. I take my meds, and I give up caffeine and alcohol. (Update: I had a follow up appointment with the rheumatologist last week, and he is very pleased with my progress. I feel great, and I’ve lost over 10 lbs since my first appointment with him. You can read more about my first visit here.)

By now, my esotropia is becoming a royal pain in the ass. I take to wearing a patch.

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This cool rockstar/pirate look is going to be difficult to give up.

I finally decide to make an appointment with the opthamologist, something I should have done months ago since he works here at CHNOLA, where I’ve been living for nearly a year. The diagnosis is the same, and I’m again given the options of the prism glasses or surgery. I opt for surgery. First of all, my insurance will pay for surgery but not the glasses. Secondly, I need a permanent solution that won’t put me back in glasses after I’ve already had surgery to be free of them.

I’m currently waiting for a call to schedule the procedure. It’s outpatient, but moderately invasive. I will be under general anaesthesia, and the doctor advised it will be a few days before I feel fully recovered from the anaesthesia. The pain is supposedly  minimal. Two months from the surgery date, I will have a follow-up to find out just how well my esotropia has improved, or -more hopefully – has diminished entirely.

So raise a glass for me, Old Job, as I’m sure ‘Ol Mephisto is moving his bishop. We’ve not reached a stalemate, yet, and we’re not intending on it.

It is with honor that I reblog the following. Deb at The Monster in Your Closet  has allowed me to be a part of her FTIAT (For This I Am Thankful) guest blogger series. She’s allowing me to share my poem October Son as part of this project, and for this and many other things, I am thankful.

 

 

Copyright Donnell Jeansonne. All rights reserved. Reproduction or duplication whole or in part not permitted without permission and credit to the author.