Tuesday, November 14, 2006

 

Just Peachy

Isn't it great that this blog has turned into a "not much new is going on here" kind of a thing?? What a drastic change from not even 4 years ago.

On that front, it is hard to believe we are rapidly approaching the six year date of when Devin was initially diagnosed with leukemia.

Devin had a clinic appointment today and has been the case for the last few, not a lot has changed. He continues to do very well with no problems. He has a bit of a cough and sniffles right now but just about everyone in the house does.

He now weighs 65.2 lbs and has grown .25" since August to stand at 54.25"

Dr Frangoul was surprised that endocrinology is just going to moniter Devin right now. With two transplants and full body radiation, he finds it almost a given that Devin is going to experience growth issues. Of course, Dr Frangoul has been surprised by Devin more than once in the past. We were told that it was a certain fact that Devin would develop horrible mouth sores during the second transplant even though he never got them in the first. Devin never once developed mouth sores during either transplant.

Devin is working hard towards his Arrow of Light award in Cub Scouts. He should complete it and cross over into Boy Scouts in February. School continues to go well.

Can you believe he will be 11 years old in just a few weeks?! Where did the time go so fast?

His next clinic appointment is not until February! We do need to get him in for a yearly visit with the eye doctor as well

posted by Devin's Mom 8:05 PM

Monday, October 02, 2006

 

Just Watching

Here is a scan of Devin's school picture. This is scanned from a printed preview so not the best around but still pretty good. Once the actual picture comes back, we will scan a better version. I think he is looking pretty darn good.

Greg retired from the Army in September and we requested that we remain with our current family doctor, for everyone in the family. We got written and verbal confirmation that the request had been granted and we could stay with our doctor. The endocrinologist was trying to get the necessary insurance forms filled out and we discovered that a glitch occurred. Devin had been moved from our current doctor to a totally different, civilian doctor that we had never heard of. After jumping through a few hoops (and raised voices), everything got worked out and Devin is back with the correct doctor.

The endocrinology appointment was pretty uneventful. Dr. Najar looked him over, looked at his labs, asked a few questions.. Right now, she is just going to watch him. There is nothing in his labs to cause alarm. She is going to get some additional labs when he see Dr. Frangoul in November. She did show me on his growth chart how he is drifting off his growth curve. He is growing but not on the same growth curve. This could be normal for him but it could be a side effect of all that he has been through. There is no reason to do anything right now except watch him.

When Devin is with a group of friends the same age or even with his brothers, he does not stand out as being significantly smaller or even as the smallest boy. His dad is not tall for a man and I am on the tall side for women so he could fall anywhere in there as he gets older.

In 2004, Devin had a bone density scan to compare bones from kids who underwent radiation to bones of kids who had not. Dr Najar would like to repeat this scan to see what his bones are like now.

Devin is doing great in school, getting very good grades this year. He is still struggling with his handwriting but since he has an older brother with similar bad writing, I doubt it has anything to do with what he has gone through. He is working hard in Cub Scouts. Devin has almost completed all the requirements for his Arrow of Light. This is the highest award a Cub Scout can earn and the only one that he will wear on his Boy Scout uniform. He is also busy selling popcorn.

His next appointment will be November 14 at the oncology clinic. See you all then!

posted by Devin's Mom 9:53 PM

Friday, August 25, 2006

 

Got an Appointment

Well, we didn't have to wait too long to get an appointment with the endocrinologist after all. I got a call from Cassie, one of the transplant nurses yesterday. Devin has an appointment October 3rd.

The endocrinology clinic called this morning so they could mail us directions. Since they are located about 50 feet from the oncology clinic, I don't think we are going to have much difficulty finding them.

posted by Devin's Mom 9:29 PM

Tuesday, August 22, 2006

 

Looking Good

Devin had an appointment this morning. As has been the custom, it was a very breif visit since nothing is going on.

He weighed in at 66 pounds, up about half a pound and was 137 cm. I believe that makes him about 4 foot 5? I would have to check to be sure.

We got the results of his three year work up, everything looks great. Devin's body is still making 100% Ryan bone marrow.

While Devin is growing, he has grown 2.5" since February 2005, he is not growing like he should be. Like he would be if not for chemo and radiation. His thyroid is on the low side of normal but to be sure, we are being referred to an endocrinologist.

Once we are seen, Devin will have a hormone and thyroid test to see what, if anything, needs to be done. More than likely, he will be placed on growth hormones to have him attain the height he would have gotten and also to push him into puberty at the time he should be there. We will know more once we see the doctor.

This is still several months off, this is nothing urgent and it is nothing that we didn't know about. We always knew that this would be the likely outcome and really, in the grand scheme of things, this is not a major issue.

Devin has had a busy summer between summer camp at Horizon, Cub Scout Camp, swimming, fishing, relatives visiting and baseball games.

A bad case of chiggers during Cub Scout Camp sent him to the health lodge after he had a reaction to benadryl. He was given zyrtec (which he has taken before) and he got an even more spectacular reaction. He suffered for a few days of trying to alternate the medications to get rid of the hives before we finally just stopped them. He looked diseased with the hives (even on the palms of his hands and soles of his feet) but it was not painful or even itchy...just gross looking. Hopefully when he goes to camp next year, we can avoid a repeat of this.

School started in early August. Devin is in 4th grade now and doing very well. He has the same teacher that Ryan had in 4th grade.

Our next appointment is in November. This means everyone will miss the annual Cub Scout Popcorn sale. If you do want to order some popcorn though, drop Devin an email and we will get it to you!

posted by Devin's Mom 9:48 PM

Friday, June 09, 2006

 

June 9, 2003	June 9, 2006

posted by Devin's Mom 1:46 PM

 

June 9, 2003 Three Years Later

My, how far we have come. When Devin was first diagnosed with leukemia and got a bone marrow transplant, he was in remission for nearly 2 years when he relapsed in March 2003.

It was a bad week, that week. I had Kierynn on Tuesday, I saw Devin on Wednesday and knew in my gut that the leukemia was back. Kierynn and I were released from the hospital on Thursday and on Friday, I was in the clinic with Devin, being admitted once more. Greg was deployed, I had a newborn as well as a son with leukemia and 5 other children at home. Dr Frangoul asked what they could do to help me and I can recall saying unless I could be cloned, not much.

Fast forward to June and once again we were preparing Devin to recieve bone marrow from Ryan. Rather than recapping it, here is what I had written on that day...three years ago.

Monday, June 09, 2003

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.

posted by Devin's Mom 12:33 PM

Tuesday, May 23, 2006

 

Three Years!

Devin had his regular clinic appointment today as well as his three year post transplant work up. This really sounds more impressive than it is, other than the fact three years have passed.

In addition to getting a bit more blood taken than normal, Devin had an echocardiogram done of his heart, had a pulmonary function test and a chest x-ray.

Devin has grown! He is almost 54" tall and weighed 64.5 lbs today. That is up almost half an inch from his last appointment.

School is out for the summer and Devin did really well on his report card. I was very proud of the way he brought all his grades up. Once again he has requested that I not put up specific grades even though there is nothing there to be embarassed about.

Devin saw the dentist last week and no longer has to wear his mouth appliance. He only was wearing it at night and now he is free. He has a check again in July and it will be checked again.

Last week he crossed over in Cub Scouting and became a Webelos II. He is looking forward to going to Webelos Resident camp again this year, Twilight Camp and of course, Camp Horizon. We are also going to Scout Night with the Nashville Sounds in July. We get to enjoy the baseball game and then camp on the infield.

While down in Nashville, Donna came to visit and have lunch with us. We got a copy of Devin's latest video. She also told me that the website featuring Devin is up and running. Vanderbilt Stories Devin is the third picture in the top row...click on his picture to hear his story.

Devin is free until August! His next appointment is not until the end of August, see you then!

posted by Devin's Mom 9:37 PM

Saturday, March 18, 2006

 

Early Appointment

We got a call last week to see if Devin could come in this week rather than next week since Dr. Frangoul was not going to available. It was not a problem so we ended up going in a week early.

There is nothing to report medically this time around. Devin weighs 64 lbs and was 53.25 inches tall. All his blood work looks great.

Donna met us up there to pick up some Girl Scout cookies and to shoot some additional footage of Devin being examined. I think she may have gotten me asking Dr. Frangoul about a fungus on Devin's arm. Turns out that I was stopping the cream too soon and the fungus kept returning.

We are coming up on Devin's three year anniversary from his second transplant. Do I hear a WOO HOO!! from the reading audience? We will be doing his three year work up at his next appointment in May.

Devin has also decided to actually apply himself at school. Per his request, I am not putting up his specific grades but can tell you that he improved in 5 subjects, stayed the same in 1 and dropped slightly in another. Devin doesn't like the fact that his brothers check this site to see what I have been saying.

On the Cub Scout front, Devin was recently awarded his Webelos rank. One of the activity pins he has been working on is the Communicator Pin. Devin is going to give a short presentation on filming a video at our Pack meeting next week to tie into some requirements for that pin.

The weather icon was changed over to the left and a lunar phase was added. We had a really beautiful day last week when we went to Dunbar Cave <---click for a picture. Kierynn was squinting in the sun, she actually was smiling.

Devin's next appointment is not until May 23rd! He has a dental appointment next week but it is just to check his mouth appliance.

See you all in May.

posted by Devin's Mom 10:24 PM

Friday, February 10, 2006

 

Third Place!

It is that time again for the annual Science Fair at the local elementary schools. This is not required although students are encouraged to participate.

Devin decided he wanted to do a project and after we googled the internet for ideas, he choose to test the strength of wet paper towels.

For nearly 10 days, after I had given him a hint sheet that told what the title was, what the purpose was, what a hypothesis was, it was a common refrain around here "Devin, let me see what you have done on your science project."

At almost zero hour, two days before it was due, Devin seemed to realize that the information was not going to suddenly appear on the paper until he wrote it down. Naturally, I was accused of not caring if he failed since I would not "help" him (that means that I didn't offer to do the project for him and make it really nifty cool).

We made a trip to the store to select the victims of the experiment and chose 5 brands at random. The paper towels Devin tested were: Sparkle, Bounty, Brawny, Mardi Gras and Decorator Towels (store brand).

I found a font that looked cool and printed out his headers and then Devin typed all his data in to print out. He used paper towels as the background on his board and with about 16 hours to spare, he was finished.

His cutting was a bit sloppy, things were not glued on straight, his coloring looked a bit quickly done so I congratulated him on finishing it and warned him to not expect to place since there were a lot of good projects out there. (Kaitlyn was in a similar boat and was testing the unpopped popcorn kernels of microwave popcorn)

Due to scheduling of other things, we could not make it to the Science Fair to hear the winners announced. A friend who was there emailed me to tell me that Devin, our own little procrastinator, won 3rd place in his grade!

For those interested, here is the breakdown:

1. Bounty held 547 pennies while wet
2. Brawny held 370
3. Sparkle held 196
4. Decorator Towels held 175
and Mardi Gras brought up the rear with 146 pennies.

posted by Devin's Mom 5:17 PM

Tuesday, January 24, 2006

 

Happy Birthday (Again)!!

I can see that puzzled look on your face and you are thinking "I thought Devin's birthday was in December" as you frantically search back posts to confirm it. You are correct, Devin's birthday was in December.

Last night we got a call from Donna who has a short time to put together a one hour special airing next week. She asked if we had free time this week so she could come up and film Devin's birthday party. We didn't have a birthday party planned but we are always willing to help if we can so we said sure.

The kids were pretty excited over the idea of being filmed and found the concept of a un-birthday party silly but fun. Donna, Matt (camera) and Casey (sound) came up here with a cake and party trimmings. We sang Happy Birthday several times and then ate cake...all before dinner. They also filmed Devin and Greg sitting on the front steps speaking. Since I was trying to keep everyone else from being too noisy, I have no idea what was said. All in all, it was fun but insane at the same time. Our part was done but the trio then got to go to another house in town and do the same thing all over with Barrett. We have a link to her page over on the left if you are not familiar with her story.

Devin also had an appointment down in the Clinic today. All is going well. He is up to 64 lbs and I didn't get his height. His counts were not back when we left but since I got no call, they must be fine. He does have some weird skin thing on the inside of one elbow. We got an anti-fungal cream to try and see if it will clear up.

While we were there, one of the doctors, Dr. Rhodes, came by and said she just wanted to look at Devin for a moment. As in, just look at him. She must have been having a bad day because she said it is just great to see a success story sometimes. She was a first year when Devin was initially brought in so I imagine she has not seen as many successes as we would all like. Devin obliged, smiled like a loon and chatted for a moment or two. I remember Dr. Rhodes saw him several times over the course of Devin's time spent in the hospital.

Devin's next appointment will be March 21, 2006 unless a need to be seen sooner crops up. See you then!

posted by Devin's Mom 10:21 PM

Tuesday, January 10, 2006

 

"I want to thank...."

Our resident budding Oscar winning actor to be spent a few days last week making another video for the hospital.

Devin spent two days with Donna, Matt (camera guy) and Casey (sound guy) down at Vanderbilt. The video will be for newly diagnosed cancer patients and their families. Devin talked about all kinds of things, met several patients, played with the nurses and told about his own experiences. It should be a neat video when it is finished.

Devin had an eye appointment with the pediatric opthamologist today. He has graduated! His cataracts have not grown at all. His vision is 20/20 in one eye, 20/15 in his other ey. Since he is not taking any kind of steriods and the cataracts have remained stable, the doctor thinks given his age that they will not continue to grow. This means that Devin will not have to have surgery to remove them. We still need to have a local opthamologist check his eyes once a year but he said if they recommend surgery, come back to Vandy for a second opinion.

In even better news, Greg has made it back home! He got in on Sunday evening. Kristen was here for a visit and leaves in the morning.

Four new pictures were added today, you can click on the link to the left to see them. He had some photos taken recently and when I get copies, I will post them up as well. I also added an appointment reminder over on the left so it is easy to see when his next appointment it.

Report cards came out yesterday and Devin went down in a few areas. He was up from his mid term progress report though. The second set of grades are normally a bit lower so we predict he will bring most of these grades up next time.

Reading 85 B
Math 88 B
Language 78 C
Spelling 78 C
Science 85 B
Social Studies 79 C

We go to Vanderbilt on the 24th for Devin's routine appointment. Expect an update then.

posted by Devin's Mom 10:02 PM

Sunday, January 01, 2006

 

posted by Devin's Mom 12:00 AM