Friday, March 6, 2015

Talking to NIH

As you may recall, J.D. and Clay spent a day on Capitol Hill last year meeting with several Senators and Congressmen about the low level of funding from NIH that goes towards Pediatric Low Grade Gliomas.  Just last week, Congressman Chuck Fleischmann (R-TN) took their meeting to heart, and questioned NIH Director Francis Collins on the status of research into PLGA brain cancer.  You can watch the video here (it is short, don't worry!).  This is a great step and we are thankful to Congressman Fleischmann for using his precious minutes of air time to get the issue in front of the NIH Director. We are working with the PLGA Association to get more families and supporters to follow up with letters and calls to NIH supporting this initiative.

http://www.tubechop.com/watch/5313257 


Clay is doing well back on the medication, and we pray his next MRI in April will show stability in the disease. 

While we like snow as much as the next guy, we are getting antsy for Spring, like everyone on the East coast.  With Clay's recovery from surgery and then piles of snow days, we are burning through lots of firewood. Daylight savings time begins on Sunday, which is a step in the right direction.

Saturday, February 14, 2015

Re-Treatment

Thursday was a very long day as we knew it would be. It started at 8 am at the clinic with signing the consent forms to begin the re-treatment trial and doing routine exams. Next, cardiology for an EKG and ECHO exam. Next, the routine eye exam (really?) to make sure the drugs had not damaged Clay's retina. Next, the MRI, which was running a routine 1- hour late.  All went fine to this point, except for the fact that Clay had nothing to eat for 24 hours and he seemed to have picked up a stomach bug along the way.  Post-MRI and anesthesia we wheeled a very "fuzzy" Clay up back to the clinic, to have the doctor come out with a sheet of paper, telling us he could not get the drugs because his sodium and calcium levels were too low.   So we ended our 10 hour day empty-handed and very angry.  That night we pumped Clay full of calcium pills and TUMS tablets, as well as gatorade and salty canned chicken soup (have you checked the sodium levels on that?!).  Friday, I took him to the clinic again for another blood draw.  Four hours later they called to say his levels were still low, but sufficient enough to qualify for the trial and get the drugs!!!  JD picked them up after work, and today Clay started re-treatment.  Big sigh.  No Valentine -- no diamond earrings -- could be better than the 56 small white pills sitting on my dresser. 

Wednesday, February 11, 2015

Post-Surgery Checkup

Clay and I went to Hopkins yesterday and got the all clear from his surgeon-- "no restrictions" -- not even on unloading the dishwasher, much to Clay's dismay.  It was wonderful to have such a happy appointment, and to see his surgeon so pleased with Clay's progress and the outcome of the surgery.  I have been thinking a lot lately about the job of a neurosurgeon.  Are there any other jobs where one person so directly impacts the life of another?   I am reminded of the joke,

"What is the difference between God and a surgeon?"
 "God doesn't think He is a surgeon." 

But really, I get that stereotype, but it is true -- God is certainly in the surgeon's hands and in his brain, and in his choice to do this work.  We were fortunate to have the best.  He told us that he was able to remove about 80% of the tumors he took out, which should give Clay some space in his spinal column and put him out of immediate risk...as long as we keep the tumors from growing back. 

Which leads us to tomorrow, which will be a very long day at Children's.  Clay has 4 tests (ophthalmology, EKG/ECHO, Clinic) and a brain/spine MRI to get through, in order to get back on the re-treatment of the clinical trial drug he took for the past two years.   We feel very cornered where we have to do whatever they ask of us in order to be considered for re-treatment.  The protocols are not written with concern for the children and what they experience, but for the researchers and the data outcomes.  If a person is the sum of all they experience, it is my quest to try to provide experiences that will help Clay feel like he is a 9 year old.  Some days, some months, that is almost impossible.  So we focus on the positive, and our friends and family help. 

Just this week, Clay's Boy Scout den came over to present him with the news that while he was out, one of his fellow scouts, Griffin Walker, built him a car.  They raced the car during the Pinewood Derby, and it came in 2nd Place!  They did a great highlights video and the kids can be heard chanting "CLAY, CLAY, CLAY!" during the race, while Clay's white car with all their signatures  on it crossed the finish line.  Clay loved the visit, which ended with him showing everyone his large scars on his back and the boys, mostly open-mouthed, saying, "Cool."


Monday, January 26, 2015

Home Sweet Home

Clay and I were handed our walking papers from Hopkins on Sunday.  The neurosurgery team came into our room about 8 a.m. and asked Clay how he was feeling.  Clay popped up from sleeping and replied, "I am feeling good, because today we are busting out of here." Which they gladly agreed to.  He got one last Italian ice from the nurse for the ride home, and we wheeled out of there around 2 p.m.

I was very impressed by the care Clay received at Hopkins.  They were attentive, caring, professional and organized.  If any of you have spent time in the hospital, you know what I am saying and how rare it is to have all of those things together.  It reminds me of the joke, what do you want, fast or good?  Well, it seems like we got both.

Clay is moving around better each day, although he is still on heavy-duty pain medicine around the clock.  So we will have a quiet week at home, praying he has no complications as the wounds heal.  Today we spent some time going through a box of cards from his classmates and teachers, many which included fun jokes from his friends.  It is good to be home, although we have to get used to not being able to order every meal by calling the in-house patient food line, 2-FOOD.   Ahh, it wasn't that good anyway.

Friday, January 23, 2015

Day Two

Hospital time passes like dog years. Although we have only been here two days, it seems like far longer.  Clay's recovery has continued to progress nicely.  Yesterday we moved out of the PICU into a regular pediatric room.  Much better sleeping with the lights out (mostly), fewer machines beeping, and check-ins every four hours instead of hourly.  Today started at 6:45 a.m. with his surgeon doing rounds.  The day quickly picked up with subsequent visits from: physical therapy (PT), neurology, oncology, radiology, pain management, and the librarian (who brought Clay two books in braille). Oh, one more: A volunteer with child life, who came in to play music with Clay while I took a quick shower (clearly this was his favorite, see:). 


The best news of the day, however, came with PT.  Clay stood up, walked around the room, and sat in a chair for 45 minutes, with not too much pain.  He was so proud of himself, and so happy to be back upright after the forced 24 hours flat. 

After this success they pulled him off the morphine drip and moved his meds to oral, so he also got to lose two of the IV's in his hands, further increasing his joy.  We had a nice visit with my Mom, but then we missed dinner since Clay got called for his post-op MRI.   This was no fun as we made him do it without sedation, and it was uncomfortable lying flat again in the scanner for close to an hour  But, our pal Laura had provided Clay with a CD of his top 12 songs, and so he powered through the scan listening to this.  (At one point he yelled from the scanner to the technicians "My mix tape is over, please start it again!") 

Tomorrow should be a quieter day since it is Saturday.  There is some talk of us going home in the next few days, which would be just fine with us.  Thanks for all your kind notes, prayers, and support. 

Wednesday, January 21, 2015

Surgery Over!

We are settling in the PICU room with Clay for the night after surgery that went as well as we could have hoped for.  The three of us arrived at Hopkins at 7 a.m.  (Four, if you are counting Clay's faithful and ever-present Mousey). There was a small "change order" thrown our way when our surgeon, Dr. Jallo,  said he and the team had decided it would be best to remove TWO spinal tumors that were growing rather than the one we had discussed ("We are running a two for one snow-day special today...")  In the stress of it all that didn't really register until the surgery was underway, and although the reasoning to get as much tumor as possible during one surgery certainly made sense, it was difficult news to absorb. 

The surgery was planned for 4 to 4.5 hours, but the doctor emerged into the waiting room in just 2.5 hours, with a smile and news that all was well.  He was able to remove most of the tumors with no obvious stress to Clay's spinal cord.  By the time JD & I arrived in the PICU, Clay was awake, and alternately flirting and bossing his nurses around.  Thank God.  He is now on a morphine drip (Why is there no two for one special on THAT?), and we are only 4 hours into 24 hours of mandatory laying flat on his back.   We are not out of the weeds, and the next few days will be critical to make sure Clay can sit up, walk, use the bathroom, and manage the pain.   It is going to be a long night, but a happy one that a successful surgery is behind us and the healing can begin. We hope to move out of ICU in a day or two, to a "regular" room.  Thank you for so many good wishes and prayers sent our way.  We will give another update tomorrow. 


Tuesday, January 20, 2015

Pre-Surgery ER Update

Clay had a rough weekend.  On Saturday evening he complained of general pain in his right leg.    On Sunday morning he awoke with strong, intermittent pain in his right arm and chest.  He also has had a poor appetite with random vomiting spells. His Docs recommended getting him to the emergency room at Hopkins for immediate evaluation.    The tests did not show any new bad news so the conclusion was that Clay is experiencing neuropathic pain as a result of the increasing pressure on his spinal cord.  The plan was to have Clay on a regime of steroids to hopefully give some quick reduction in swelling while he awaits his surgery on Wednesday morning.  (it is almost impossible to coordinate Clay’s complex care on an emergency basis during a long, holiday weekend. ) JD and Clay did an overnight at Hopkins,  finally being released Monday evening at 6:30 pm.   While Clay still feels rather crappy we have learned that even a couple less nights in the hospital and instead in his own room is of great therapeutic value.