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

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Robot Boy

From my other blog which I started to dedicate to following my son’s battle with pediatric brain cancer.

Walgreens, Waterworks, and Parking Lot Ire.

I was proud of myself today. I actually went into a Walgreens store and purchased just what I went in for. Those who know me best know that is quite a feat. It’s not my fault they always have my favorite candy 3/$3, or that they carry lots of miscellaneous shiny merchandise. Blame Walgreens! Every time I’m in one, I succumb to the sweet siren’s call from those center islands, a virtual pirate’s booty of brightly colored and otherwise enticing products. And who hasn’t gone into a Walgreens store during Halloween and been automatically, magnetically drawn to their holiday aisle? Well?

Image property of Walgreens Co.

Anyway I was there to fill a prescription after my annual visit to my doctor. By the way, as much as I enjoy shopping at Walgreens, their pharmacies usually suck. This one was OK. No problems. No trying to charge me full price without going through my insurance. And the people were really nice… But I digress. I was visiting my Ob/Gyn for the first time in a year, as is customary, but it was also my first visit since Doodles got sick. I didn’t realize what an upsetting experience it would be until I was there. I’d already read Pinwheels and Poppies’s post My Tale of Baldness, Bliss, Magic, and Cheese Sandwiches. in the waiting room, and I wanted to call my husband and admonish him for letting me go there alone. Although I knew he was at the hospital with Doodles.

I go in the back and right away I’m recalling our many visits there during my pregnancy. I try my hardest to hold it together until the nurse and I are in the exam room and she asks the inevitable question “How’s the baby?” This is when I broke down, babbling that he wasn’t well and explaining the situation. (If you’re just tuning in, you can catch up here.) Of course she was very comforting and understanding and concerned, but I still felt like a big blubbering dummy. I get through the exam all right and when I’m leaving, the nurse at the front desk asks me the same question. I try to hold it in, but again I’m overcome with emotion and again she is very understanding and concerned and what not.

Later I texted my husband about it. The conversation went like this:

“They asked me how AJ was and I lost it.”
“Who asked? The doctor’s office?”
“The nurses. They were like ‘Oh how’s the baby?’ and I was like ‘Not good.’ And they’re like ‘Why?’ then I just started balling. I felt like an idiot.”
‘Why? People cry.”
“I know. And it’s the Ob/Gyn. They prob have preggies in there balling all the time.”
“Prob so.”

* Yes, that is an exact transcript. All of my text messages are perfectly grammatically correct.

On the way back to the hospital I stop at the above mentioned Walgreens to fill a prescription. To my delight, a spot on the end near the curb was free. I parked there thinking it would be easier to pull out since people have a tendency to want to park their cars as close to my car as possible. All was well until this happened-

Jackwad's work truck blocking me from pulling out

Some jackhole parked his big friggin’ work truck in a spot behind where I parked, blocking me in. As soon as I saw it I said some words aloud that I won’t reproduce here, but let’s just say they are NSFW. Then I see the driver walking to the truck and I assume that he is going to get in and go. I wait a few seconds then realize he isn’t going anywhere. He is jerking around with a styrofoam ice chest in his truck and talking on the phone. At this point I decide I can maybe fit, but I was too close to the curb (irony!) and unable to get out due to his stupid truck being there. I then exit my vehicle and stand there with the door open where he can see I am obviously waiting for him to get a move on. About a minute passes and I decide I’ve had enough so I start to walk over to tell him something when he gets in his truck and starts to back out. I don’t know that he actually noticed I was walking that way, but I like to think he did and decided to move because I am so super intimidating.

Right? Pretty intimidating.

*The above text transcript is just a dramatization. The words are the same but the grammar has been edited for effect (affect?). Meh.