tag:blogger.com,1999:blog-9985359791910301382024-03-13T04:43:20.705-04:00Following ClayMary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.comBlogger136125tag:blogger.com,1999:blog-998535979191030138.post-73315439831387822602018-02-06T09:10:00.000-05:002018-02-06T09:10:15.164-05:00<div class="MsoNormal">
It has been 2 years since the last post, but we figured maybe some friends and family still have this marked for updates. If so, we wanted to reach out again. Clay has been in Childrens’ National Hospital since
Thursday morning for an array of issues which combine to form a
“failure to thrive”. He is experiencing nausea, vertigo, neuropathy
and a palsy shake. He has lost 10 pounds off his
small frame due to a reluctance to eat because of his gastrointestinal
distress. Clay’s energy and cognitive focus have declined to the point
he has been unable to complete a full school day. And most alarming to
us is Clay’s loss of his joie de vivre.
He is anxious and clinically depressed.</div>
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The good news----this latest malaise is not
attributed to NEW growth of the cancer. The not-so-good news----the
Docs have yet to be able to pinpoint the reason for Clay’s recent
issues. We must keep in mind his brain and spine have
been infiltrated by cancerous tumors which would be enough to screw up a
body. But why the pronounced symptoms at this juncture? One
suspicion is this is a sign of accumulated impact from the experimental
chemo which for the past 5 years has kept Clay’s
cancer from spreading. Is Clay’s body being undermined by the very
chemo drug which has kept him alive? Before fully contemplating the
need to look for an alternative therapy (there are no readily available
good options) the Docs are performing every
possible diagnostic in hopes of identifying a factor/factors that may
be catalyzing his condition. His latest MRI reveals a "bleed" in his tumor located near his cerebellum which could contribute to some of these symptom. This “establishing baseline” should be
complete on Tuesday and the entire team of Docs will gathering to discuss the data and provide
some next steps for getting Clay’s quality of life to improve. We
hope and pray for some relief for Clay; right now he is in a physical
and mental crater.Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com1tag:blogger.com,1999:blog-998535979191030138.post-30652811632461393422016-01-19T09:17:00.001-05:002016-01-19T09:17:58.941-05:00All GoodClay's last MRI, done last Saturday, was stable. Great news. It was a wonderful holiday, surrounded by family and friends. Clay has been busy, even though his riding lessons are done until Spring. He participated in his school's winter concert last week, playing the clarinet; and earned his gold belt in his Tae Kwan Do classes this weekend. Here he is proudly wearing his new belt. <br />
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<br />Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com0tag:blogger.com,1999:blog-998535979191030138.post-75983424814612233362015-11-13T09:13:00.001-05:002015-11-13T09:19:01.304-05:00Monster Mash Success!Our 1st annual Monster Mash was a real spooktacular time! Cardinal Wuerl gave the blessing, Dr. Raabe from Johns Hopkins spoke about low grade gliomas and the challenges in treating them, Congresswoman Eschoo spoke and Congressman Crowley auctioned of the top pumpkins. Clay recited his "Someday" poem, and Fox News picked up the story, which ran on the 10:00 news that night. Clay was thrilled when kids at school the next day said he was a "movie star." We raised close to $300,000 which will fund 3 research projects next year. If you want to see photos and read more about the event or see the news clipping, it is all up on <a href="http://www.imagineananswer.com/" target="_blank">www.imagineananswer.com </a><br />
Thanks to so many people who donated money or services! We are so touched by such widespread support.<br />
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Clay's last MRI was stable and he is feeling good. He is learning the clarinet at school, and continues with riding and tae kwan do. I'm changing his profile picture to one taken at the stable with his instructor, Brooke. I love that photo! We are settling in with our new puppy, Hazel, who is now 12 weeks old. She loves soccer.<br />
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<br />Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com0tag:blogger.com,1999:blog-998535979191030138.post-88808871762664687572015-10-23T12:03:00.001-04:002015-10-23T12:03:03.305-04:00October 23, 2015<div class="separator" style="clear: both; text-align: left;">
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JD and I are
working towards starting our own foundation to raise money for research for pediatric
brain cancer. We are calling it "Imagine An Answer." Our first event is next week at Eastern
Market on October 27th, "Monster Mash Pumpkin Bash." Over 20 Members of
Congress are carving pumpkins for the event; we will have a silent
auction and then auction off the pumpkins as part of the program. So many people have worked
to make this event a success -- Lebanese Taverna is catering, H Street
Country Club is doing a special cocktail, we have a DJ, Tracy's Kids is
doing artwork from the pediatric art room at the children's clinics they serve, we have Annin flag decorations, a full program and new website, to
name a few contributors. All of the information is at
www.imagineananswer.com if you would like more
information or are able to attend. JD has been working around the
clock to make this happen. We hope to make
this an annual event and all of the funding will go to research to make
better, less damaging treatment available for kids like Clay. </div>
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I
have been putting together a slide show to show during the event. It includes many photos and short stories of kids with brain cancer. Each child's story is testament to how limited the current
choices are for effective treatment, and how devastating the side effects of these treatments are. What Clay has been through is not unlike many
of the others children. We have to do better at finding answers of how to tackle this devastating disease. We have to give these kids a better chance at a childhood that
is not filled with suffering.</div>
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On the non-medical front, we have a new member of the family. Hazel is a 9 week old Australian Labradoodle. (Australia's first seeing eye dog breed for allergy sufferers!) Clay and I went to get her last Monday in Windsor, Pa. Here is a shot of Clay on the ride home.<br />
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She is a real sweetheart so far and is doing well with her training. It is nice to have a dog in the house again. <br />
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Clay is loving horse riding, and is starting to help with all phases of the ride, including getting the horse ready for the ride, and putting him back in the stall afterwards. Here he is on a recent lesson. Each week they do a new drill. Bareback was his least favorite. This week was learning to direct the horse over planks. The founder of Sprout is amazing, and has a real knack for knowing how to adapt the lessons for Clay. They are having a fundraising 5K this weekend on Sunday if anyone is in the mood for a jog in the country! You can register at the race. <br />
<a href="http://www.sproutcenter.org/" target="_blank">www.sproutcenter.org</a><br />
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<br />Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com0tag:blogger.com,1999:blog-998535979191030138.post-87363482100840847362015-09-17T10:07:00.002-04:002015-09-17T10:07:19.735-04:00Settling into a routineNo news is good news on the medical front and Clay continues to do well on the current protocol. We have been busy getting back into a school routine, after a long and wonderful summer. Clay has his same wonderful braille teacher, his same wonderful O&M teacher, and two new wonderful classroom teachers, so I won't complain that it took three years to reach this point...<br />
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On the recreation front, Clay has started horse riding lessons horses at Sprout. This is a therapeutic horseriding center for kids with various disabilities. The owner / founder is a former school teacher, who was left money by her uncle (who was paralyzed by polio) to do something to empower youths with disabilities. So, her family bought 17 acres in Aldie, Va., and here we are. Clay has already trotted, gone outside on trail rides, and is learning to direct his horse "Pippin" to go where he needs to go. I imagine the movement must feel wonderful to Clay as he travels on Pippin through space no longer easily accessible to him. <br />
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Second class, "Look mom, no hands!" I love watching him concentrate while he is riding Pippin, but of course, being Clay, he still manages to get in lots of talking and laughing during his lessons. <br />
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Fall is a busy fundraising season and we have various races and activities going on: A 5K race in Washington DC on October 3 to support the brain tumor trouncer team at Children's Hospital; a 5K race on October 25 in Aldie to support Sprout, and a Tae Kwan Do kick-a-thon on October 3 to support the Adaptive Tae Kwan Do class that Clay does on Saturday's. Let me know if you would like to participate in any of these events and I can give you more information. <br />
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And the most meaningful family event this month, our wonderful Grace turns 13 on September 25th. Hold onto your reigns Clay, a teenager is in the house! <br />
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<br />Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com0tag:blogger.com,1999:blog-998535979191030138.post-76446613126136753992015-07-31T16:17:00.001-04:002015-07-31T16:27:17.821-04:00All GoodWe drove 11 hours on Tuesday from Hyannis, MA to get back into town for Clay's MRI. Yesterday we got the news -- shrinkage all around! Clay has been on the re-treatment medicine now for 6 months, and we got the green light for another 3 months. The doctors are all very pleased with the way his disease is responding to being back on the medicine, and the best news is that this time there is no forced "end date" for us to stop. In the meantime, some other MEK inhibitors are making their way down the approval pipeline, and we pray that these will be effective also in the future.<br />
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This news capped off a great month in every way. NJ, ME, MA, lots of action and lots of visiting, 2,100 miles clocked on the car odometer. Clay enjoyed fishing, learning to throw on a pottery wheel, art class, kayaking, swimming almost daily, and of course consuming lots of lobster and ice cream. We were lucky with great weather the entire month. Since we had stayed in the same house in MA last summer, it was all more familiar and easier for Clay this time. Now we are home for a few weeks, and braille "summer school" is underway...<br />
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<br />Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com2tag:blogger.com,1999:blog-998535979191030138.post-74899168354195129922015-07-01T12:24:00.000-04:002015-07-01T12:55:05.464-04:00July 1Several people have e-mailed and called, hoping things are ok since I have not posted a blog. Things are all good with Clay...he had his clinic appointment yesterday and we got the green light for another month. Strep hit our house in May/June, and it took Clay a few rounds of antibiotics to clear it. We think all the time spent in hospitals has made him have a pretty high tolerance for bacteria so strep didn't respond like it should have. But this appointment brought good news that he has put some of the weight he lost back on, and things are looking great. His next MRI will be the end of July.<br />
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Clay has been busy the past week with BELL camp at a church nearby. This is a NFB camp (the National Federation of the Blind) and is almost exclusively run by people who are also blind or visually impaired. There are 5 children, and about 10 volunteers/teachers. There is one young woman volunteering who Clay finds particularly hilarious, so he is enjoying himself. They play adapted games, do braille lessons (in a fun way...), make themselves lunch, do crafts, and field trips. After spending the year being the only cat in a classroom full of rocking chairs, Clay is enjoying being with other visually impaired folks who have the same challenges that he does. <br />
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On Saturday the kids and I head out for most of the month -- a stop in NJ to visit with family, a stop in Maine to visit with family, and then a few weeks in Massachusetts ourselves and some time with friends. Bliss! Happy July to you all.<br />
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<br />Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com0tag:blogger.com,1999:blog-998535979191030138.post-28688864371571002212015-05-06T13:26:00.002-04:002015-05-06T13:26:38.583-04:00YES!!!We got the good news late on Monday that the tumors are again responding to the medication! The MRI showed shrinkage in all places where the tumors were progressing when Clay was off medication during the winter. So big smiles all around. Since Clay is the first child back on treatment after the 2 year trial, the doctors were uncertain what the response would be overall, and particularly where Clay had surgery. So Clay's doctor also had a big smile on her face. Thank you to everyone reading this for routing for Clay this past week! Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com1tag:blogger.com,1999:blog-998535979191030138.post-36220356696799438022015-04-27T13:28:00.000-04:002015-04-27T13:28:12.059-04:003 Months InClay is finishing up his 3rd month on the re-treatment trial. That means it is time for another MRI, which is scheduled for next Monday. Please keep Clay in your prayers that the drug is working and his tumors have stabilized. The lack of an update over the past month has meant good news, as Clay has been feeling well and has fully recovered from the spinal surgery. It was such a L O N G winter. We were happy to get away to Delray, Florida in March for Spring break, where we soaked up the much needed sun rays. Since then, Clay has been keeping busy on weekends with Tae Kwan Do and swimming lessons. Both are helping rebuild his strength and stability. He has earned one star and a 1/2 bar so far in Tae Kwan Do. <br />
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<br />Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com0tag:blogger.com,1999:blog-998535979191030138.post-15671294521475952842015-03-14T14:22:00.003-04:002015-03-14T14:22:19.948-04:00Someday...Clay's class had a "poetry reading" event at school yesterday where they each read a poem they had written. At the end, they each read a bit of their "Someday..." poem. Here is Clay's:<br />
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<br />Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com0tag:blogger.com,1999:blog-998535979191030138.post-75875435099130641212015-03-06T11:08:00.001-05:002015-03-06T11:19:01.953-05:00Talking to NIHAs 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.<br />
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<span style="color: yellow;"><span style="background-color: yellow;"><a href="http://www.tubechop.com/watch/5313257" target="_blank">http://www.tubechop.com/watch/5313257</a> </span></span><br />
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Clay is doing well back on the medication, and we pray his next MRI in April will show stability in the disease. <br />
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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. Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com0tag:blogger.com,1999:blog-998535979191030138.post-35991957052360693022015-02-14T16:04:00.000-05:002015-02-14T16:04:28.973-05:00Re-TreatmentThursday 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. Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com3tag:blogger.com,1999:blog-998535979191030138.post-80235984781824014232015-02-11T09:01:00.000-05:002015-02-11T09:01:48.756-05:00Post-Surgery CheckupClay 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,<br />
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"What is the difference between God and a surgeon?"<br />
"God doesn't think He is a surgeon." <br />
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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. <br />
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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. <br />
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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."<br />
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<br />Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com0tag:blogger.com,1999:blog-998535979191030138.post-3640751473927079682015-01-26T14:50:00.001-05:002015-01-26T14:50:58.654-05:00Home Sweet HomeClay 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.<br />
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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. <br />
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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. Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com3tag:blogger.com,1999:blog-998535979191030138.post-51755526476969173342015-01-23T22:33:00.000-05:002015-01-23T22:33:26.723-05:00Day TwoHospital 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:). <br />
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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. <br />
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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!") <br />
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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. Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com1tag:blogger.com,1999:blog-998535979191030138.post-51060477954198644962015-01-21T17:42:00.002-05:002015-01-21T17:42:54.082-05:00Surgery 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. <br />
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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. <br />
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<br />Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com0tag:blogger.com,1999:blog-998535979191030138.post-31212151254579347092015-01-20T12:00:00.001-05:002015-01-20T12:00:38.930-05:00Pre-Surgery ER UpdateClay 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. Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com1tag:blogger.com,1999:blog-998535979191030138.post-41416904533958003332015-01-17T11:31:00.000-05:002015-01-17T12:00:57.939-05:00JD 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. <br />
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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. <br />
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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!<br />
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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.<br />
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<br />Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com0tag:blogger.com,1999:blog-998535979191030138.post-80897268225703111002014-09-09T14:28:00.000-04:002014-09-09T14:28:15.544-04:00Re-entryHello, 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). <br />
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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. <br />
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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. <br />
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<br />Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com1tag:blogger.com,1999:blog-998535979191030138.post-63241246783853621762014-07-20T21:41:00.000-04:002014-07-20T21:41:02.358-04:00Summer UpdateSummer 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. <br />
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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.<br />
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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.<br />
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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. <br />
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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. <br />
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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. Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com1tag:blogger.com,1999:blog-998535979191030138.post-56556675563082832162014-05-12T10:25:00.000-04:002014-05-12T10:25:50.328-04:00Spring UpdateWe have been busy the past few months, with no emergency updates. We enjoyed time with family from far and near over the Spring Break/Easter holiday, and most recently for Clay's 1st Communion which was Saturday. We were so proud of him walking into the church with a buddy by his side. His mobility teacher, Nina, met us at the church one day the week prior for a practice session. Father Burchell prepared Clay to receive the Eucharist, by letting him practicing with an unconsecrated Host. Saturday morning Clay said to me, "I am so excited today is my Communion! I wonder what the Host will taste like when it is holy!" Here is one of my favorite shots:<br />
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The past month or so I have noticed Clay pushing himself to do more. He now feels more comfortable going outside and navigating the yard. For Mother's Day he asked if I would like him to buy me a coffee at Starbucks, and he, Grace and I walked the half-mile to the store. After school he will often go down to the swing set and play. He now swings like any 8 year old, and I have to restrain myself from asking him to slow down. This is something Grace and he can still enjoy together, and as you can see, she keeps her eye out for him (when she isn't fighting with him). <br />
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Clay is feeling well and is now on month 21 of the clinical trial. We are in conversations about our options for the Fall when Clay will reach the 24-month mark and be forced to stop the drug according to rules of the trial. Our best hope is that there will be an addendum to the trial that will allow the children to be retreated with the same drug should they relapse. We hope to know for sure within the next month. At this point Clay has one more MRI in June on this trial, and then 3 more months of pills if all is stable.<br />
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As always, there is lots of research to do. I went to the Perkins School for the Blind outside of Boston recently, as part of my Master's program. Technology has provided so many new options for people with low-vision or blindness, and I spent a day with the folks at Perkins who provide these tools, learning all about the products they offer (such as the Smartbrailler Clay uses). On the way home I met with a researcher at Schepens Eye Research Institute. Dr. Feng Chen is the lead researcher studying paths to regeneration of optic nerves. There are several possibilities that are still in the early stages, but she is optimistic that they will find a way to regrow damaged optic nerves within the next decade. It is just as complicated as bringing new brain tumor drugs to trial, but I left feeling thankful that science, and brilliant people like Dr. Chen, are working to find solutions for currently untreatable injuries and disease.<br />
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We have a research paper from Dr. Raabe on Phase 1 of the mouse-model project at Johns Hopkins, and I will post that shortly. We hope to begin Phase 2 within the next month. <br />
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<br />Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com0tag:blogger.com,1999:blog-998535979191030138.post-44958263681244913862014-03-24T14:54:00.000-04:002014-03-24T14:54:08.836-04:003 More MonthsThe results of the MRI were stable, with some discussion about increased enhancement on a few spots. Reading MRIs, we now know, is more of an art than you might imagine. But it is more tense than normal when you are on a clinical trial where the rules are very exact. Regardless, Clay was cleared to stay on the trial, and so we march forward another 3 months until the next MRI. His heart test was also stable. Three more months and school will be out (maybe, unless we get another snow storm). We have a lot of work to do to prepare Clay for third grade, when reading becomes much more important to keeping up in school. But we will get there! Thanks for checking in. Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com0tag:blogger.com,1999:blog-998535979191030138.post-41949469025266770102014-03-07T13:56:00.003-05:002014-03-07T13:56:46.953-05:00Another MRI AheadTime is marching on and we are in month 18 of the clinical trial. Next Saturday, March 15, Clay will have a MRI. On Tuesday he will have an echogram of his heart to make sure the pills are not doing any damage. Please keep him in your thoughts and prayers for both of these tests, so he can stay on the medicine and finish up 2nd grade. A bit of good news is that last month we had a full audiology exam done, and his hearing is perfect. I was very worried since he has had regular MRIs since he was 3, and they are extremely loud exams. From now on he will be armed with heavy duty ear headsets during the exam to protect his hearing.<br />
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Clay has been working hard at learning to read and write in braille. He is now spending two hours a day in school on this task, and he is making good progress. I am so proud of him, and it is amazing to watch him feel the pages of a book and make words and sentences out of the braille dots. He is also doing well in math, also learning to do this in braille, and he is working on the same second grade material as his peers. It is our hope that in third grade he will only be pulled out for reading and braille, but will do math with his regular class. The Smartbrailler makes this integration into the regular classroom much easier. For now the school is using our brailler, but we hope they will provide him with one next fall. <br />
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As part of his lessons he has vocabulary words to learn to spell each week. This past week's words included "fate." He asked me, "Mom, what is fate?"<br />
"Well," I explained, "it is what is <i>most likely</i> going to happen in the future."<br />
"Oh, I get it, " he said, "like: It is my fate to get singing cards."<br />
"Right," I said, happy for this new phenomenon in the greeting card business. And, thankful for a simple definition for a difficult concept. <br />
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<br />Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com0tag:blogger.com,1999:blog-998535979191030138.post-68929131584731127242014-01-27T22:33:00.001-05:002014-01-27T22:33:36.504-05:00Keeping Warm and Catching Up<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: small;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">With the kids home from school for the past two months it has been hard to do much writing, or much of anything, except make hot chocolate and wrestle to get the remote control (to hide). Today is the first day that I am optimistic that the kids MIGHT be in school for five days, weather-willing. I pulled out a pile of paper that had been calling my name, and started to work on reducing the stack. Then an e-mail came in from Snapfish, reminding me that I wanted to get copies made of a few recent photos. Two hours later I had downloaded 1,300 photos. That was not my intent, but that is another story. Well, if you Give a Mouse a Cookie...the story goes, and I ended up looking through too many of these 1,300 photos. Don't worry, I won't make you do the same, I know your time is precious too. </span></span><br />
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<span style="font-size: small;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5UpwPrIF-9yz93ss_Y2iF3pbKw1wlxdPQrYJ5yJPIKPZKgqf9a_6cNQafrmm7jYVbuxzpfY78JYnP8JHLMlgfHrpfpvFdI4n1e7kmI1GApyz75g1tA_sOXfs1VSFTd6qrua8Ra782Fjr6/s1600/2010-03-13+10.55.26-1-1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5UpwPrIF-9yz93ss_Y2iF3pbKw1wlxdPQrYJ5yJPIKPZKgqf9a_6cNQafrmm7jYVbuxzpfY78JYnP8JHLMlgfHrpfpvFdI4n1e7kmI1GApyz75g1tA_sOXfs1VSFTd6qrua8Ra782Fjr6/s1600/2010-03-13+10.55.26-1-1.jpg" height="320" width="276" /></a></span></span><br />
<span style="font-size: small;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">But just a few. These were taken in Georgetown on March 3, 2010, when Clay was 4 and Grace was 7. Clay had been diagnosed a year before, and I think I was in still in shock, alternating between feeling like the worst possible thing had happened, but also feeling like we would get through this unscathed. Now I look back on these photos and think, at least in part, what happy days these were. Then, I had no idea how resilient we would have to be, and I had no concept of how strong our will to survive is. Since these photos were taken I have learned that today could be the best day. A few summers ago I was sitting at the beach watching Clay float around on a raft in the ocean. It was a rough summer as his tumor was growing, and he was suffering bad headaches and nausea. My friend sitting with me said, "What if this is the best you have?" I remember being shocked that she said that to me, and feeling angry that she thought that was a possibility. Now I realize that that was a brave and a wise thing to say to me. A reminder to savor each day.</span></span><br />
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<span style="font-size: small;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj59iVE9r8YyyHfqydLUaf6LVLsnxk5JR5_O6OWIATbjT2OfmKyJgU_cm0ms4mOnx3t0yPSOFKsMnj0w7jPglvphg49m4t9vD_3P0St80t28t9bTx7Oxjrnr-mth9WlFqSdic_tUxP6Vk9/s1600/2010-03-13+10.55.35.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj59iVE9r8YyyHfqydLUaf6LVLsnxk5JR5_O6OWIATbjT2OfmKyJgU_cm0ms4mOnx3t0yPSOFKsMnj0w7jPglvphg49m4t9vD_3P0St80t28t9bTx7Oxjrnr-mth9WlFqSdic_tUxP6Vk9/s1600/2010-03-13+10.55.35.jpg" height="320" width="240" /></a>Four years later we have new challenges to overcome, but we are grateful every day for how well Clay is doing. His energy is good, and he has been focusing hard on learning to read and write in braille. </span></span><br />
<span style="font-size: small;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Miraculously, he continues to see in his heart what the rest of us sometimes forget to
notice. On Christmas night, Clay said to me, "Mom do you know who would
have thought this was the best Christmas ever? Grandpa Ed." </span></span><br />
<span style="font-size: small;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">"Why? Why this Christmas, Clay?" I asked him.</span></span><br />
<span style="font-size: small;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">"Because I got so many cool models. Grandpa LOVED models!" </span></span><br />
<span style="font-size: small;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Grandpa Ed, who died when Clay was 5, was an exemplary model builder. </span></span><br />
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<span style="font-size: small;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">On the medical front, Dr. Raabe and the researchers at Johns Hopkins are continuing to publish news of their work on low-grade gliomas. Here is another recent update from his group: <a href="http://www.stbaldricks.org/blog/post/st-baldricks-researcher-blocks-pathway-in-low-grade-gliomas-to-reduce-cancer-cell-growth" target="_blank">http://www.stbaldricks.org/blog/post/st-baldricks-researcher-blocks-pathway-in-low-grade-gliomas-to-reduce-cancer-cell-growth</a></span></span><br />
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<span style="font-size: small;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">We will be attending a special fundraising event in February, "Belle Notte" to support pediatric brain tumor investigations at Children's National as well as the pediatric developmental neurobiology initiatives at the National Brain Tumor Society. A main goal of both of these groups is to find therapies to help children survive their brain tumors without devastating long-term side effects from their treatments. Clay's doctor, Dr. Packer, will be calling Clay and several of his other patients up for a special recognition at the event. </span></span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span style="font-family: "Trebuchet MS",sans-serif;">Time goes by so quickly. I am going to take</span> our dog Pearl's advice and go find a warm spot by the fire.</span></span> </span><br />
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<br />Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com0tag:blogger.com,1999:blog-998535979191030138.post-53021796834795492412013-12-20T10:47:00.000-05:002013-12-20T10:47:50.774-05:00A Happy BirthdayWe celebrated Clay's 8th birthday last weekend with a few of his friends at the Melting Pot, a fondue restaurant. We had been there once before, when Clay had vision, and he had good memories of dipping, cooking, and eating the food. That first visit was with family; this birthday visit was with 7 kids. The whole hot-oil and timing how long your food is cooking (really, asking kids to cook their food for 2 minutes without a timer?) took on a new level of challenge, but we did it, and everyone had a good time. They spelled his name out in brownies for part of the dessert. <br />
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On Monday Clay did his first MRI with no anesthesia. It was a long day at the hospital, made longer by a traffic delay due to Michelle Obama's visit, along with her dogs, to read Christmas stories to the kids in the lobby. (No, we didn't see her). <a href="http://www.upi.com/News_Photos/Featured/2013/12/upi/4c606b630592bfde1ddd42fd986c1628/First-Lady-Michelle-Obama-visits-Childrens-National-Hospital-in-Washington-DC/?spt=hfp&or=1" target="_blank">http://www.upi.com/News_Photos/Featured/2013/12/upi/4c606b630592bfde1ddd42fd986c1628/First-Lady-Michelle-Obama-visits-Childrens-National-Hospital-in-Washington-DC/?spt=hfp&or=1</a> This was the first time that I joined Clay for the two hours in the MRI room. Clay had an audio tape to listen to, but nonetheless, it is two hours of listening to very loud knocking, whirring, and occasional jackhammer noises. All while lying perfectly still. The scan quality deteriorated as the time wore on due to some motion on Clay's part, but thankfully they got what they needed and we are free for another three months. Yesterday we reviewed the scans, and things are stable. The doctors have been told to add some more "checks" for kids in the second year of the trial, and that additional monitoring will start next month. Some children are having heart irregularities and muscle breakdown, so we will pray Clay shows neither of these side effects. <br />
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Dr. Raabe, the doctor at Johns Hopkins who is managing the research we (and many of you!) are sponsoring to help build a mouse model for Clay's disease, was covered recently on his research. You can read the article here: <a href="http://www.sciencedaily.com/releases/2013/11/131107093828.htm" target="_blank">http://www.sciencedaily.com/releases/2013/11/131107093828.htm</a> It is crucial that other drugs be developed that shut down these tumor's pathway's without doing devastating damage along the way. The drug Clay is on is one such drug, but currently only a handful of kids in the country are on this drug. Since the long-term side effects are unknown, its use will be limited to two years. Currently there is nothing waiting in the wings for Clay when these two years are up. So this research is the most critical next-step for kids like Clay.<br />
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My involvement in Clay's condition has been bumped to a new level as I just completed my first semester of a Master's of Education in Vision Studies program that will prepare me to work with children who are visually impaired. My first courses were Introduction to the Visual System and an Audiology class. These classes felt very much what I imagine medical school would be like, all filled with anatomy and disease. I am excited that everything I am learning is going to benefit Clay and other children like him, and it feels good to be putting an official stamp on work I was already doing on the side. <br />
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We wish you and your families a blessed holiday. <br />
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<br />Mary & J.D.http://www.blogger.com/profile/06291279064525820512noreply@blogger.com0