Tuesday, June 15, 2010

 

Long Time!

I didn't realize that it had been so long since we last updated any info on Devin. He turned 14 (!!) in December.

Devin continues to do very well. He is about to finish 7th grade in a few weeks. He is still playing the trumpet, is active in Scouts and is looking forward to a few trips to the beach this summer, including a week at the Outer Banks. He also really likes the XBOX 360 and hanging out with his friends.

This picture was taken just a few minutes ago as he was headed out to Boy Scouts for a Board of Review. He should have earned his First Class Rank.

posted by Devin's Mom 6:32 PM

Friday, December 12, 2008

 

Happy Birthday Devin!

No news is always good news. Devin is doing simply fantastic. We are rapidly approaching six years since his second transplant. He has no linger issues really. Well, he has cataracts in both eyes but they are stable and don't bother him. He is a bit on the short side of normal but is within the norm so is just being watched. He is in Scouts still, plays the trumpet and is basically a thirteen year old kid. Here is a picture that was taken in October showing what a young man he is becoming.

posted by Devin's Mom 12:41 AM

Thursday, January 03, 2008

 

Trying again

It is not a secret that I am less than thrilled with the hospital that Devin is seen at here. (Ha! "seen at" if you consider it has been ONE appointment in the last year) We had an appointment in September, which the clinic called the day before to cancell. At that time, I was told no appointments were available and I would be called with a new appointment.

Between all the various holidays that crop up between October and January that it crossed my mind that we never got a call. I called this morning to find out what the heck was going on. Amazingly, I was able to get an appointment almost immediately. I also was transferred over to Endocrinology and was able to secure an appointment there as well. Even better, Devin can see the endocrinologist in Fairfax...no driving into Washington DC! Since Devin is seeing some oncologist that I have no clue who he is, maybe we can be followed up in Fairfax as well. I know the doctor that Dr. Frangoul sent us to does not go to Fairfax but since we have apparently been shuffled off to someone else, perhaps we can switch there.

I do realize that Devin's medical needs at the moment are low because nothing is going on but it doesn't inspire much confidence in me the way that this has all been done. I wish we had the ability and funds to just fly to Vanderbilt for checkups.

Of course, it has been almost 5 years since his relapse and he is doing wonderfully. Devin is on no medications, he has nothing going on medically. He does need to be followed through endocrinology but it is still some time off before anything may have to be done. It is not a given that he will need anything to kick start his teen growth but it is likely.

I am hoping that his next appointment on the 15th will be a more positive experince than the other times we have had contact with Children's Hospital.

posted by Devin's Mom 2:34 PM

Tuesday, December 25, 2007

 

posted by Devin's Mom 12:00 AM

Thursday, December 20, 2007

 

Better Late Than Never!

posted by Devin's Mom 11:11 AM

Wednesday, December 12, 2007

 

Happy Birthday Devin!

Tweleve years ago, a sweet little blue eyed blonde came into our family. Now, he is not so little, not so blonde and has moments of not so sweet. We have decided we will keep him. Look for a picture later this evening.

posted by Devin's Mom 3:44 PM

Saturday, June 09, 2007

 

Four Years and Relay For Life

Today is Relay for Life. I decided to check on the date for Devin's second transplant and discovered it was today! Four years ago, we brought Ryan in to donate bone marrow to give to Devin. Here is what I had written at the time:

Day Zero...Transplant Day!

Today was the big day, Day Zero or Transplant Day. Ryan was not scheduled for surgery until 2:30 pm but on the off chance we could get an earlier time, he could not eat anything after midnight and only clear liquids until 9 am. Greg, Kierynn, Ryan and I went down to hang out with Devin while we waited. He was started on levoquin yesterday, an antibiotic.

Dr Frangoul came in to check on us as did Becky, one of the transplant nurses. Since Ryan was part of a study in using the GCSF shots in child donors, we filled out some papers on how he reacted to it and if he had any problems. Since he didn't even say ouch in the 5 days he got the shot, that went very quickly.

We had to be down in the Pediatric Surgery area by 12:30 with Ryan so we went down and waited. And waited. And waited. About 2 pm, Greg went back up to Devin's room to check on him. When he got up there, Kristen called and said that the Surgery people had called the house and said if we were not there immediately, the surgery would be cancelled! Greg ran back downstairs, went storming back into the surgery area to point out that we HAD been out there for almost 2 hours. He found the correct person, who said a mix up in paperwork had caused the mild panic. Everything got cleared and Ryan was called back to his room.

Once there, he got his vitals and such taken care of. He opted to not take the versed, a mediacation to relax him, since he doesn't like the taste. He was fully awake as they wheeled him back. He did request a root beer smell in the mask to put him to sleep. There are all kinds of scents that he got to choose from. Once he was put under, an IV was started and he got a caudel block.

Greg and I went back up to Devin's room to wait with him while Ryan was in surgery. An hour after he went in, we had Dr Frangoul come in to tell us that they were very pleased with the results and the marrow was currently on the way to lab to check it out. Ryan was still in recovery when I went upstairs to be there when the bone marrow was started.

Up in Devin's room, Dr Frangoul let me know that they had gotten the same volume from Ryan as they had 2 years ago but with 50% more cells...which is what they wanted to see happen with him getting the GCSF shot. Devin was given cortisone and benadryl and then Ryan's bone marrow was brought in. There were two bags of bone marrow, for a total of about 300 mg. It took a little over 3 hours to give it all to Devin and he had no reactions to it.

Ryan stayed down in recovery for quite awhile since he was feeling pukey but close to 8 pm, he came up to Devin's room. Both boys were pretty well down for the count by that time and mumbled at each other. Kristen came up to spend the night with Devin.

Both the boys got a stuffed leopard today. Ryan has a normal leopard that he named Tropic and Devin got a snow leopard he named Snow.

Devin's counts today are not handy but I believe his WBC was 0.4 PCV 22 and platelets were not back yet. They will jump tomorrow from getting the bone marrow.

It was quite a day and so hard to believe it has been 4 years already! Devin was honored as a Survivor today at a luncheon for Relay for Life. We got a picture of both boys, which I will get scanned in.

There is a problem with the archives at the moment, not sure why. Not to worry, they are all still here, I just can't get the link active on the web page at the moment.

Devin has a swollen ear at the moment, we are keeping an eye on it. We think it is from a bug bite and nothing serious.

We have kept pretty quiet here since nothing much is going on with our boy. His next clinic and endocrine appointment is not until September.

posted by Devin's Mom 11:06 PM