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 2007
David 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 pictures
4 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 Climbing Jacob'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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