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23 September 2011 It has been an interesting time for David lately ... and not in a good way.
David has
to get surgery on his right foot. The Vincristine (Chemotherapy medicine) caused tendon, muscle, and ligament damage
in his legs and especially feet. Most of you know he spent some time in a wheel chair because of this. He
eventually was able to move to leg braces and then walking on his own due to physical therapy. Well ... along comes
growth hormone and his bones naturally grow as a result. This has exacerbated the damage his feet suffered.
The foot drop has become so pronounced that he is back in physical therapy and now needs some surgeries. The first
surgery on the right foot will be 'relatively' painless and quick. It is even an outpatient surgery. Our excitement
came when we had the surgery scheduled (it was supposed to be today) but the insurance company rejected it as 'unnecessay'.
The surgeon told us it would cost $16-24K ... not counting count surgeon's time, anesthesia, etc., etc., etc.
Well we asked for prayer through a lot of places. God answered.
The surgeon's office held a peer to peer review with the insurance company's doctors and they approved the surgery.
We have resceduled it. He will continue physical therapy
after the surgery. The next surgery will be much more severe and require a hospital stay. The left foot may
not have to have surgery ... or may have the first surgery only. It is in better shape and responding better overall
to physical therapy. Both feet have made improvements. It is our hope and prayer that David can eventually
return to be able to walk like anyone of us ... in a heel to toe manner without pain and suffering.
So ... if
that drama wasn't enough to try my patience and faith, David decided to be ... well David ... again. We had to
take him to the hospital. He was experiencing a bunch of issues I won't get into here. His problem
was a perfect storm of mutiple things. Those things have all been treated and he is in much better shape than he was
Sunday. We are thankful for the prayers of friends and family as well as the outstanding diagnostic work done by
the hosital. Under the circumstances, things went much better than we thought. And the best news (to me) is that
they ran a CT Scan ... to check for a few things ... and the scans were negative. So the first piece of news
we received was this. Translate -- tumor is not back. Frank remains dead. Everything after that was
fluff to us.
The battles continue for David's mental
and physical health. And we remain grateful for prayers, well-wishes, and the mercy of God. 1 March 2011 Happy birthday David. A year has gone by. And I haven't done any
updating. David is doing okay. He has grown with the growth hormone shots he gets. He continues to be
treated by multiple doctors for various issues both mental and physical. He continues to take lots of pills, one
shot, and testosterone gel daily. He is 16 and in ninth grade. He has an IEP (Individualized Educational
Program) through the public school system. This school year is a struggle. But it is 180 degrees turn from last year's issues.
The teachers at his current school are much more interested in his well-being. We have some issues. But it
is still so much better it makes me wonder how anyone in the previous school has a job. Some of them seemed functionally
illiterate. I have email threads from teachers where they misuse/interchange words such as "patience and patients"
without knowing the difference. This team of teachers is much better by far. We have a new IEP review meeting
tomorrow. Hopefully we can work out some of the minor issues and continue to help David move forward and learn more.
1 March 2010
Happy
birthday David! It is hard to believe that David is 15 now. This has been such a long journey. We are
also at the 5 year mark (roughly) since Frank was removed by Dr. Shahinian and chemotherapy was subsequently stopped. We are
close to saying 'cancer free'. We wait anxiously for those words. During the first 5 years, the chances of recurrence are
80%. After that, it drops to 20%. David has been NED (no evidence of disease) for almost 5 complete years. We will be seeing
his surgeon later this month and having a couple of cancer free parties in the LA are with friends and family. David
continues, however, to struggle with things. School is very difficult for him. He suffers from many of the late effects of
radiation to the brain. A quick link for anyone who wants to know more is: http://dnn.candlelighters.org/Information/lateeffectscog1/tabid/343/Default.aspx
That link from Candlelighters talks about the types of educational issues and problems children can face
due to late effects. Interestingly enough, the article calls out David's type of cancer. The main gist of things as quoted
in the article is "Many survivors developed cognitive dysfunction (cognitive = thinking process; dysfunction = abnormal
function). This occurred because tissues of the brain are very sensitive to radiation". This typically starts rearing
its ugly head in the 2-5 year span after radiation. We have been going through this for several years. And some areas have
become worse than others. But that belies the joy of the day. David is alive. David is 15. Many years
after we were told to pick a coffin and find a graveyeard, David is alive. All thanks and glory be to God. 25 May 2009
It
has been a quick moving year. And I have been remiss in putting upates online for David. The truth is that things kind of
roll on as normal. David is growing. With the growth hormone that he gets shots of daily, he is up to
5'2" now. He's quite pleased with his growth. He continues to have some struggles in school (although
he has an IEP in place), in various relationships, and with suffering from various things such as being bi-polar, depressed,
etc. He continues with treatment and we continue to look for alternative options and parallel options in his treatment. We did have a scare in February. David had a growth on his tongue. Upon seeing it, his pediatrician called it
'suspicious' and immediately sent us off to get a biopsy. Fortunately, it turned out to be a benign growth of excess tissue.
Once it was cut out, everything was back in order. David is looking forward to the school year ending
and summer starting. We don't know what we're going to do with him over the summer. But we are looking into various volunteer
opportunties and other things to help him occupy some of his time. I'll post some new pictures of him
in the near future once I get them ready. 6 March 2008
I know it has been a while. I am finding it hard
to give updates on David. He has had several scans and appointments since November. On the oncology side of things, every
thing still looks good. David doesn't have to go back to his oncologist until late Summer for his next check up with him.
He does have a follow up with his surgeon in relation to the mastoidectomy coming up in May. But things there are fine as
well. Unfortunately, he is still experiencing and dealing with lots of side effects from the treatments he we through, especially
in regard to radiation to his brain. He is on a dozen or more pills a day for various things. And he is still getting hormone
shots daily. He starts hormone therapy soon to kick start puberty. Oh joy. Another teenager hopped up on hormones. Oh frabjous
day! David has a new psychiatrist and is being treated a little bit differently than he was previously. The former approach
was treatment based on diagnosis (such a 'bi-polar', 'depressed', 'ADHD', etc.). The current approach is based more upon treating
David's situation as being caused by brain trauma (radiation, etc.) and not as common bi-polar situations. It is an interesting
path we are on. And we are not sure what the outcome will be. It holds promise. But it also takes time. So there is frustration
on David's part as well as ours. Meanwhile, David is doing okay in school. We are working closely with several of his teachers,
his school counselor, and the school management. He has areas to improve in and still needs help. But he is making progress
with the current arrangements. And we are making tweaks here and there to make things better. Meanwhile, David has a new nephew
who was born on Monday, a few days after David's birthday. Baby and mother are both doing fine. We are getting ready to go
to LA soon. We are all looking forward to the break on the West Coast. 27
November 2007David had another follow up on his surgery on the 16th of November.
Everything looks good and we don't have to go back for a while. On the 17th, we got on a plane for Egypt. Over Thanksgiving
week, we took the trip to Egypt that Ellen Degeneres gave to David. David had a blast seeing the sites and still wants to
be an Egyptologist one day. I've posted a bunch of pictures here: Egypt pictures4 November 2007
David
has had one follow up on his surgery. Everything looked well. He has another follow up coming up in about 2 weeks. So far
everything is coming along fine with no complications or issues of any kind. We are busy making plans for our trip to Egypt
that Ellen Degeners gave to us. David is really excited about seeing the pyramids, the Sphinx, mummies, and the like. It should
be a lot of fun. In October, we went to the Maryland Renaissance Festival. David gave it a try on Jacob's Ladder. And then
he wanted to climb the rock wall. We were pretty hesitant at first. But we let him go try it. The links to below show both
things David tried. We were quite amazed at the rock wall climbing. It hasn't been that long ago when David was in a wheelchair
and leg braces. He still has a long way to go, but the progress he has made is obvious.Rock ClimbingJacob's Ladder 23 August 2007
David's surgery went well. He was
in the operating room a little less than 2 hours. He came out of anesthesia slow. But he always does. He woke up hungry and
thirsty. He has not had to use any pain killers even though he was prescribed narcotics. He only had an hour or so of discomfort
2 days after the surgery. On Monday, the pathology came back. There is no evidence of tumor or cancerous tissue. All the tissue
and bone shvaings were clear of that nonsense. He did show infected tissue. It was hardended in some places and blocking drainage
in his head. That's why he has had constant upper respiratory infections, ear infections, mastoiditis, cellulitous in the
face, sinus infectinos etc. With that mass gone and a temporary drainage tube in place. He should start to get healthier than
he has been in the last 4 years. Good news all around!
14 August 2007
David's been David lately. He managed to get pink eye again and another bit of drainage from his left
ear. But, his platelets and other blood counts are pretty good. He has a surgery scheduled for tomorrow. It could range anywhere
from inserting a drainage tube into his left ear or a radical mastoidectomy. We won't really know until they take a look.
Scans are all proving to be inconclusive as to whether there is non-draining liquid, built up scar tissue, damaged mastoid
bone, or worse in there. So he's off for what is supposed to be an outpatient surgery tomorrow. We are obviously hoping for
the best and praying that it is not the worst case scenario. We will post more after the surgery and follow up next week.
Meanwhile, I've put some pictures of David's trip to Ireland up on the site.
22 July
2007
It has been an interesting summer so far. David made it through 5th grade.
He still has some big learning curves to deal with. And adjusting to middle school could potentially be difficult. We are
hoping for the best. Our initial conversations with the Vice Principal of the school were very promising. It looks like David
will get adequate attention and assistance in the new environment.
David has been sick on and off all summer so
far. We went on a vaction trip to Ireland at the beginning of the month. On the second day there, David got pink eye. We had
to have a doctor give us a housecall at the hotel. On the fourth day, he blew his left ear drum. He was fairly miserable most
of the time we were there. But especially after his ear blew. Fluids were leaking out steadily. He spent his time getting
cotton balls switched in and out of his left ear. At first we thought it was related to his seemingly perpetual mastoid infection
and issues. But we found out when we came back to the states that he had blown his ear drum.
Speaking of mastoid,
David's scans have gotten worse. They are to the point where we have to have a look. He will be going into the hospital for
a surgery in August. He will have a drainage tube put into his left ear. Then they will look at the mastoid to see what is
going on. We hope that it is merely lots of fluid that they can drain and leave it at that. But they may have to shave away
part of the bone with a high speed drill. If the mastoid is really bad, it could potentially become a more serious mastoidectomy.
Worst case scenario -- tissue/tumor growth. We don't think that is the case. Mostly because the size and shape of the 'spot'
on his MRIs and CT Scans has remained relatively similar over the last couple of years. We think, hope, and pray that it is
either only fluid or a combination of fluid and necrous scar tissue.
I was hesitant to post anything -- and so
I haven't for the last couple of months. None of us know what we are looking at exactly. We didn't want other people worrying
and building it up to more than it is. Because we don't know what it is. We will be in contact with Dr. S at the Skull Base
Institute again before the surgery. But it is being done locally. And we have confidence in the specialist doing it. If all
goes well, it will be an outpatient surgery. We may be there all day -- but he'll be released. Not much different than when
the tumor was removed by Dr. S.
So we wait and hope and pray for the best. I will post some pictures of David from Ireland
in the next week or so. My computer died and it takes too long to upload on the laptop. Bear with me.
1
May 2007
Yes, I am slow and lazy about updating this site. But here's a shot at it.. ...
Everything went off without a hitch in LA this year. We had a good time with friend, family, adopted family, etc. On the
Ellen Show, David was asked by Ellen what he wanted to be when he grew up. He said 'Egyptologist'. So she said he'd probably
have to go to Egypt for that and presented him with a 1 week trip to Cairo. She then said he'd probably need to go to college
once he went to Cairo and figured out that's really what he wanted to do. So she presented him with a Sallie Mae/Upromise
interest bearing $25,000 scholarship check that will help him go to college. They also announced that David would be the new
child ambassador to the Skull Base Institute Tumor Fighters initiative. Dr. Shahinian and Ellen became Sir Shaninian and Dame
Ellen as the first knights in the kingdom.
Here's a link to the show which also has information about King David's
court and the whole program: http://www.skullbaseinstitute.com/david_on_ellen.htm
And now, I will go post some
pictures ... 10 April 2007 We just got back from our annual trip to LA. I'll give more comments and post some pictures within the next week
or so. For now, I'd just like to say we had a wonderful time with family and friends and adopted family while we were out
there. And what Ellen DeGeneres and her staff did for David was so incredible that words cannot describe it. Much
love and thanks to Ellen, Vikki, Denise, Hrayr, Ellen #2 and everyone else out there in LA
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