Letter to St. Jude Children’s Hospital

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In early 2012, we reached out to St. Jude Children’s Hospital for our son RB (if this is your first visit, read about him here). The doctors at CHNOLA were hesitant to treat RB as they weren’t sure if he was “salvageable” (the word used by the doctor who advised us of this). We were told by a friend we should request a transfer to St. Jude. We did, but the staff at CHNOLA dragged their feet on calling with the referral until we went to administration about the issue. I personally spoke to the nurse coordinator of brain tumor patients at St. Jude’s.

After some days, and apparent discussions involving who knows what between St. Jude’s doctors and CHNOLA’s doctors, St. Jude determined RB could not be treated there as he did not meet their “criteria” (their word). Because he was on a ventilator, St. Jude would not take him. He is home now, on a home ventilator, and recovering well- after CHNOLA decided they could, in fact, take a stab at treating our child.

The day before we learned of RB’s cancer, my husband held a benefit for St. Jude Children’s Hospital at the business he once owned before it was dissolved due to lack of funds to keep it running. We’d donated to St. Jude for a long time before RB’s illness (We didn’t know of St. Baldrick’s Foundation then). We did so because St. Jude’s does help many children and families, and we do not deny that, but since we were refused their services and remained at CHNOLA, we have incurred-as one can imagine-many expenses that prevent us from being able to donate extra money each month. We called St. Jude and explained to them our monthly scheduled donations would have to stop and we explained why (because we were of course interrogated on our decision to stop donating). This, however, has not stopped St. Jude Children’s Hospital from mailing us solicitations asking for donations. Today I received yet another letter from their institution requesting donations, along with the letter detailing how terrible it is for kids and families that suffer through this terrible disease (OH REALLY? Didn’t notice!).  Instead of tossing it into the burn pile as I’d usually have done, I decided to send them a letter.

 

I want to make it clear that I do not want anyone to stop donating to St. Jude Children’s Hospital because of our experience.

They do a lot for children and families. They just decided not to help ours. There are foundations, such as the American Cancer Society, that I have decided are not worth donating to as they spend more on solicitation than funding research, and they spend next to nothing on pediatric cancer research. Because of our own situation, we have decided to dedicate our time and donations to St. Baldrick’s Foundation, an organization that spends the most of any cancer research foundation toward actual research. Their donations are used strictly to fund pediatric cancer research, something that is far underfunded. Only the U.S. Government spends more toward pediatric cancer research, and St. Baldrick’s uses over 80% of each dollar donated to funding research, unlike the ACS.

2013-03-23 18.10.25
I’m bald and badass for St. Baldrick’s

At any rate, I would like to share with you all the letter I wrote to St. Jude Children’s Hospital in regards to their constant solicitation.

 

“Dear St. Jude Children’s Hospital,

 

Our family wants nothing more than to help kids with cancer and their families. Our own son is in recovery from brain cancer for which he was treated at Children’s Hospital New Orleans. We would like to continue to donate to institutions such as St. Jude’s to help assist children with this devastating illness, however, when we reached out to your hospital for assistance, your hospital denied our son treatment because he didn’t meet the “criteria.” Because St. Jude Children’s Hospital refused us assistance, we have-as you may imagine-many unpaid medical bills. Therefore, we are not able to donate extra money. We would appreciate it if your institution would cease sending us mail asking for donations. Use the money instead for funds related to treating the sick children at your hospital and for assisting their families. My best regards and prayers to the children and families of St. Jude Children’s Hospital who are suffering through the same tremendously devastating and life-changing event as our family has been enduring for these last fourteen months. We appreciate your cooperation in not sending us more mail asking for donations.

 

Thank You,

 

Donnell C Jeansonne”

Ready to go. Unlikely to make a difference. But ready to go anyways.
Ready to go. Unlikely to make a difference. But ready to go anyways.

 

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.

Findings

I’ve written in many of my past posts that my son who is two years old has been sick for quite a while, suffering from seeming bronchitis related illnesses and even pneumonia. In January he became unable to walk properly and it led to the assumption by his pediatrician that he was experiencing inflammation in the inner ear due to an ear infection. Although she was concerned the cause was much more serious, she treated the ear and we all hoped for the best.

His condition declined over January and February, which found us not even a week ago in Children’s Hospital explaining to a myriad of doctors how he’d been ill since late last year and so forth. I’ve repeated the spiel so many times I’ve got it memorized. I don’t even have to think about it.

The pediatricians caring for my child at the hospital, like his regular pediatrician, were concerned about his dizziness and instability. They were concerned enough to conduct a series of simple neurological tests that raised their concerns further leading them to order a CT scan of his brain.

I knew the news was bad when two doctors came into the room, pulled up chairs, and said they were there to talk about the results of the CT scan. They advised us it had revealed a large mass in my son’s brain. I was frozen in this moment, trying to conceptualize the reality of this information. As I held my two year old son on my lap with tears teeming, he turned around, knelt on my thighs, put his hands on my face, and said, “Don’t sad, Mommy.” Trying not to upset him, I assured him Mommy wasn’t sad. Then he reached out to tickle my face in an attempt to make me smile. And though I was still crying, it worked.

An MRI was ordered for the next day, and it showed the doctors the actual size and location of the mass. From the MRI they also learned it had travelled down into his brain stem and his spine.

Oncologists informed us in their matter of fact way that the tumor is malignant. They also told us due to its delicate location, the surgeon will not be able to remove the entire tumor and my son will require follow up treatments of chemo and radiation.

I suppose it’s needless to say that since then we’ve been bombarded with information. I’ve spoken to twenty plus doctors working in nearly every field, it seems, from neurosurgery, orthopedics, oncology, endocrinology, speech therapy, and dietary needs.

They come in pairs, sometimes more. I spoke to three ENTs, two orthopedic doctors, and four neurosurgeons. And that’s not all.

Surgery is scheduled for next week. Suffice to say I am petrified. The procedure will be extensive, it will be dangerous, and it is critical that the tumor be removed as soon as possible. The neurosurgeons are only waiting until next week because my son’s lungs are still swimming in secretions from the pneumonia.

I’m proud of myself for remaining so positive up to this point. Optimism is a trait with which I’ve rarely been associated. But I am optimistic because I won’t be any other way. Because my child is still looking at me for reassurance. He doesn’t know everything, but he knows he is sick and he knows he’s in the hospital. And although his speech is now impaired, along with his ability to swallow, eat, drink, and breath, he is still looking at me and wanting me not to be sad.

I Saw Mommy Kicking Santa Claus

It’s the holidays again, that stressful time of year when parents overextend their checking accounts and their patience. The time of year when we may behave in ways unbefitting  individuals who are trying to teach other, smaller individuals how one should behave. The Santa kick really was an accident. Really. However I’m not sure how my two-year old son perceived it after our confrontation over oatmeal or juice or hot dogs – I can’t remember. I’m sure to him it seemed that Mommy, Mean Mommy as I’ve been known, turned and punted the singing and dancing Santa doll across the kitchen on purpose. I felt the weight of the thing against my shoe as I took the step that sent Santa hurtling onto the table and into the pile of unwrapped Christmas gifts still in their bags. I continued walking for a second before I decided to stop and see what I’d actually hit with my foot. My son’s reaction was no reaction which I found odd, especially since I was apologizing and laughing simultaneously, wondering what permanent damage I’d just inflicted on my child’s psyche. It was funny to me. I couldn’t help it. My son, sitting helplessly in his high chair, as Mommy seemingly booted the jolly old elf. Since then Santa has taken a  fall  (I dropped him) in which his mechanical spine suffered damage, and he is  no longer able to shake his butt and move his tiny feet. My son beseeched me to fix the doll, but as of eight o’ clock this morning Santa remained paralyzed. He does still sing his Jingle Bells song as enthusiastically as ever, though.