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.

Saturday, January 17, 2015

JD here----As many of you know Clay had experienced a period of blessed stability in large part due to the experimental therapy he was receiving as part of a FDA Phase 1 Clinical Trial.   The trial had reached its legal limit on November 1 and all 7 kids on the trial were required to disengage from the therapy for a minimum of three months prior to "reapplying" for further use.   While this arrangement was established after a very complex decision-making process the simplest explanation is that the possible long-term side effects are a complete unknown which makes both the researchers and manufacturer very reluctant to push the boundaries any further. 

Clay had his first MRI scan since the conclusion of the protocol on January 2 and to our dismay the results showed renewed  growth across the entire disease "footprint" in the brain and spine.   Of particular concern is a specific lesion on his lower spine that the Docs now conclude was showing modest growth even while Clay was on the therapy but which has grown at a rapid rate since the conclusion of the trial.   Beyond the fact that this spot is exhibiting a confounding and worrying unique growth behavior the concern is that the lesion is in a position and of a size to be a serious threat to Clay's nerve functioning.  Due to the pressure on this spot of his spinal cord they believe he is in danger of losing sensory and motor ability in the lower half of his body.  It is the Docs' view that Clay cannot risk waiting for a chemo therapy to act (or not) on this spot and so have recommended immediate surgery to "de-bulk" this one tumor in hopes that it will relieve the pressure on his spinal cord and buy some time for the next chemo therapy agent to exert some control over the growth of his entire disease state. 

Of course this procedure has much inherent risk---opening up the spinal column and operating on the spinal cord is no run-of-the-mill procedure but Mary and I have interviewed neuro-surgeons and have decide to have Dr. Jallo at Johns Hopkins perform the procedure which is now scheduled for the morning of Wednesday,  January 21st.  Jallo is a nationally acclaimed surgeon who specializes in spinal cord operations.   We feel very fortunate to have the "best of the best" just an hour from our home and are hopeful for a good outcome under his care.   The projected recovery period includes 3-5 days in the hospital and roughly two weeks of recuperation before returning to school.  We will keep this page updated as we have more information.   Once more into the breach!

 Clay's spirits are high though he admits to being a bit "nervous about having to be on 'his' back" for so long.    His school mates and teachers gave him a cheerful send-off yesterday with a pizza party and arms full of stuffed animals,  get-well notes (in braille) and books on tape.   When we first shared with Clay the news of the need for this operation and its intent he responded by saying:  "Dad, wouldn't it be great if when  they took out this tumor it was attached to the other ones and they all came out!"  Yes Clay, that would be great.

Tuesday, September 9, 2014


Hello, and welcome (almost) to Fall.  We are off to a good start to the new school year.  Clay has a new teacher, a new braille teacher, and a new assistant.  It seems like the "dream team" we had hoped for, and we are enthusiastic and hopeful that 3rd grade will be a good one for Clay.  Grace has started Middle School at a new school, and she is also feeling enthusiastic about 6th grade and all of the new activities and classes.  So, although it was tough (particularly for me) to leave our wonderful vacation location of Cape Ann, I am begrudgingly adjusting to reality.  I continue to work on my Master's program, which now includes a weekly trip to Boston for my orientation and mobility classes.  Currently, we are learning to cross streets and navigate outdoor travel (blindfolded, of course, and using a long cane). 

Clay had his final MRI on the clinical study last week.  The report is that things are stable, and he now goes into the last two months of receiving this medicine.  We are waiting for approval that the drug will be available to him should he need it once he is off trial, but the paperwork is still not signed.  We hope to have this assurance before the trial ends.   We realize how lucky we were to get the last slot for Clay on this trial, but it is hard reentering the uncertainty of what comes next.

I will not torture you with endless summer photos, but just my favorite one of Clay enjoying himself on a hammock, taken by our friend (and prior teacher) Laura. 

Sunday, July 20, 2014

Summer Update

Summer is passing too quickly. Clay has been busy and has had a few "firsts" recently.  Right after school let out he attended a week of summer camp at Columbia Lighthouse, in Silver Spring.  Each morning a driver picked him up and returned him home at the end of the day.  There were about 20 kids at the camp.  This is the first time he has attended camp for children with visual impairments, and I think overall it was a good experience for him.  For the final day of camp they performed skits, and of course Clay chose to tell jokes.  Besides swimming, they did adapted sports such as beep-ball (like baseball) and practiced their navigation/cane skills. 

Since then he has been doing twice a week swim lessons, and has made great progress.  He recently passed the "swim test" at our pool.  Here he is with his swim teacher Hannah, celebrating his feat.

Clay is also doing braille lessons a few days a week, and surprisingly is enjoying this as well.  He recently cleared out a shelf in his room for his braille books at his own request.  As I am also taking braille, we are good study buddies and sometimes I have to call him to help me with the braille page I am trying to translate.

A real treat was a recent Nationals ballgame with our friend Pat Leahy.  We got down onto the field to watch batting practice, and Clay and Grace enjoyed getting signatures from several of the players.  Clay's highlight was  having Ian Desmond give him his bat, pine tar and all.  Here is a shot of us down on the field.  Ian is 6'8" which is why I only reach his shoulder.  Grace is very into baseball these days so she is able to give Clay blow by blow details on what is happening on the field. 
Phase 2 of our research project at Johns Hopkins is underway.  A huge thank you to our friends who have helped move this along.  Dr. Raabe is pulling experts from several areas to focus on low grade gliomas, and his hope is to have a center at Hopkins dedicated purely to Clay's disease type.  We are not there yet, but hopeful that this will move forward in the future. 

We are vacationing close to Boston this August, and I will be able to get to my classes more easily, while we all enjoy some down time.  Clay's next MRI is in September, and then we face very difficult discussion on next steps.  Please keep Clay in your thoughts and prayers so he might have a good year as he starts 3rd grade this Fall.