A Day in the Life of Devin
Just a short little page to update family and friends on Devin's progress while undergoing treatment for a relapse of leukemia and his second bone marrow transplant. Devin is currently in remission and we plan to keep him there FOREVER!
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Next Clinic Appointment:January 15, 2008
Devin's mood today was:
Visit some of our friends!
Barrett
Joshua
Angel Ryan
Angel Connor
| CURRENT MOON lunar phases |
Sunday, December 25, 2005
Wednesday, December 21, 2005
Mouth Appliance
Devin got his replacement mouth appliance on his birthday. What a time to go to the dentist, huh? The first go around, I had to tighten some spring loaded screws that pushed against his eye teeth to move them out. This time, the dentist decided to work on expanding Devin's palate first.This is Devin's appliance. It is sitting so what you are seeing is the part that goes against the roof of his mouth. The S shaped pieces of wire that you see near the front is where the spring loaded screws will go. Right now, each night, I take a little tool and open up the two halves of this by the silver thing in the middle. When Devin got this, there was no gap there. It only opens up a short space each night but eventually it will be where the dentist wants it to be. Keep in mind, this is just the beginning for Devin, he is having this done by his dentist. He won't even seen an orthodonist until he loses some more teeth.
Devin and many others in the house got a 24 hour virus a few days ago. It was not fun, let me tell you, to feel miserable and have to take care of several other equally miserable people. We did recover quickly though. Devin had his picture taken for some Vanderbilt project coming up.
We had a kid portrait taken and as soon as they come in, I will scan a copy so everyone can see how handsome Devin has become (and all the kids!)
Talk to you all soon!
Monday, December 12, 2005
Ten Years Ago
Tuesday, November 29, 2005
Ready for his close up
Devin had an appointment today down at Vanderbilt. As we were waiting, Dr. Frangoul poked his head in the door and asked if we could stay awhile or if we needed to go. I immediately thought he saw something wrong in Devin's blood work and needed to order some test. This raced through my head in just a few frantic seconds before Dr. Frangoul explained.
Recently, a little girl named Angelina had a transplant. While she spent 6 weeks in the hospital, she watched the tour of the hospital Devin filmed. She fell in love with Devin and would talk about him and tell people that Devin was her boyfriend. The staff were thrilled to discover that not only would Devin be in the clinic today but so would Angel and she could meet him.
We finished out appointment...Devin weighs 63 pounds, has some dry skin but looks great...and Angelina was not there yet. We wandered over to the floor to deliver popcorn and chat with Miss Linda and Miss Yolanda. After a few choruses of "She'll Be Coming Round the Mountain", Devin, Donna and I went out to the garage to get Donna's popcorn. We went back up to the clinic but no Angel yet.
Rhys, Devin and I loaded up in the truck and went to the Boy Scout Council Office. I took care of some Pack popcorn paperwork and then some Troop popcorn stuff. We went back to Vanderbilt. I told Devin on the way up that if she wasn't there yet, we just could not hang around any longer. As soon as the receptionist saw us, she smiled and said Angelina was in the clinic.
A nurse brought Devin over to meet Angelina. She just turned 4 on Thanksgiving and is a tiny little thing. She is also bald from her treatment but she looks so fantastic. She was a little shy to see her boyfriend in person (and he does look a bit different) but posed for pictures. Her mom took pictures and Devin went down on his knees so he was not towering over her. Devin and Angelina spoke for a few minutes. Her mom told me how she loved to watch Devin on the TV and when she was restless, they would turn to Devin for her. We promised to bring Angelina an autographed copy of the DVD next time we came to Vanderbilt. The nurses all were so pleased that Angelina got to meet him finally. Devin was so sweet with her, talking to her and gave her a hug when we left. Maybe we should carry some 8x10 glossys with us from now on for his adoring public.
As feared in our last entry, Devin threw away his retainer. He didn't do it on purpose but he committed the ultimate in ignoring the rules. Devin wrapped it in a napkin and set it on the table. Of course, it was tossed. I didn't find out quickly enough or I would have been digging through the trash to find it. He tossed it less than 2 weeks after he got it. We are currently waiting on the replacement.
Devin doesn't have to go back until January 24th!!! TWO MONTHS!!!! That is just so unreal, that much time. We will be back in a few weeks to film with Donna and he will also be seeing the pediatric eye doctor in early January.
Devin will be ringing a bell for the Salvation Army for a few hours later in the month, I will get some pictures of it and post it.
Wednesday, October 19, 2005
Retainers and Report Cards
Devin has a surprise visit to the dentist today. Surprise only because I was not expecting it. I think I mentioned that Devin had molds taken to make an appliance for his mouth. When the molds were taken, we made an appointment in December to have it fitted and have sealants put on some molars.
The dentist called this morning and said the appliance was in and could we come in this afternoon. I juggled some things and we were at the dentist this afternoon. The appliance, retainer, whatever you want to call it, is easy enough to put in and take out. Devin just puts it in, bites down and it is in. To remove it, he just pulls it down. He has to wear it on his upper teeth.
According to the dentist, this will be doing several things. There are some loaded springs that are pressing on his front teeth to make the gap between his front teeth smaller. There is a part that is on the roof of his mouth that will gradually be opened to expand his palate. There is also something that is working on his crossbite. There are stainless steel wires that are in front of his teeth so he does look like he is wearing braces.
The appliance can come out and he has to remove it to eat. He should be wearing it at all other times. He has a box to put it in. He has already been told that at lunch to put it in the box and then in his lunch box, never on the table. I don't want it lost.
Since there is a piece on the roof of his mouth, he has to get used to it. Right now, he is having a hard time speaking. He can speak fine, we just can't understand him as easily. The dentist said it will take a few days before he adjusts to it and he can speak normally again. We go back on Tuesday to have it adjusted.
Devin got his report card today and did very well.
Reading: 97 (A)
Math: 83 (C)
Language: 85 (B)
Spelling: 84 (C)
Science: 95 (A)
Social Studies: 95 (A)
Handwriting: N (Needs Improvement)
We are very pleased with his progress. He is attending an afterschool reading program, we are working at home with his reading and tomorrow we have parent-teacher conference. Yes, he is getting a 97 in reading right now but it is something he really struggles with. He excels in Math, which his grade really doesn't reflect. Devin tends to rush through his math and make mistakes that bring his grade down.
His popcorn sales have gone very well and he has exceeded his personal goal. There is still time to order so if you want popcorn, give us a call :)
Devin's next appointment at Vanderbilt is in November so unless something noteworthy comes up, we will see you then.
Tuesday, October 04, 2005
Gained Weight!
Devin has gained a bit more weight. He is not chunky by any means but it is great to see that he is gaining like a normal kid would be doing.
Obviously, we had an appointment down at Vanderbilt today. As we were sitting in the waiting room, there was a teenaged boy and his family waiting as well. Devin was called back to get his vitals and asked me to hold his Gameboy or something. The teenaged boy looked at Devin and then looked at me. "Is he the boy in the hospital video?" I said that he was and the girl who was the teen said she recognized his voice since he looks differently. Apparently that video is part of any patient's orientation/check in.
Dr Frangoul was pleased at Devin's progress. We have nothing really going on with him. That bump is still on his eye and he saw a pediatrician last week for it. He is on an antibiotic ointment and it doesn't seem to be doing much good. Dr. Frangoul said to keep using the ointment and warm compresses.
While we were there, Devin went to work selling popcorn for Cub Scouts. We also went over to the patient floor to see some of his nurses. Miss Yolanda and Miss Linda were both there and Devin was very glad to see him. One of his other special nurses, Miss Adele, works later in the afternoon and so we rarely get to see her.
We were later in getting back to Clarksville today and Devin was not sorry that he missed school. He is counted absent anyway since he has to be present 3 hours and 15 minutes to be counted. I still usually take him back to school but today, it was just a little too late.
Our appointments are now bumped back to every 2 months!! Woo hoo!! We don't have another appointment at Vanderbilt until the end of November. Devin does have a dental appointment coming up to have an appliance fitted to the roof of his mouth to expand his teeth. That is not until early December.
He starts a remedial reading program after school this week, we have started working on his handwriting and I have ordered some workbooks to take him back through reading basics. His reading has improved but his spelling and handwriting are still lacking. We are going to concentrate on getting his print where it can be read easily and then worry about cursive later.
Devin has also been very busy with Cub Scouts. Webelos is a 2 year program with a lot to accomplish in that time so he has been working on various things. It is also Popcorn Sale time so he is out canvassing the neighborhood to reach his goal of selling $250 of popcorn.
Remember, no news is always good news as far as Devin goes. Thanks for checking in with us!
Tuesday, August 23, 2005
Going Well!
Devin has been enjoying the summer even though he actually started back to school August 9th. He spent a week at Twilight Camp, going for several hours each night. Between Twighlight and Webelo Camp, he is well on his way to completing his Webelo Rank for Cub Scouts.
Devin has a new baby brother! August 16, 2005 - Aidan Rhys was born at 1:53 am and weighed 8 pounds, 9 ounces. He was 21.25" long. He looks like all the other kids, depends on his facial expression who he looks most like at any given moment. Rhys has a load of dark hair and since he never opens his eyes for more than a moment, we are unsure of color right now. Devin loves to cuddle on Rhys and tell him not to watch dumb shows on TV when he gets older, like Kierynn and Iain do. Another great surprise for Devin was that Dad was able to fly home for the birth of Rhys. Since it was uncertain if it would actually happen, I had not told the kids it was possible until we were sure. Greg should be home for another week or so before he has to return.
Devin had his regular appointment set for the day Rhys was born so we had to reschedule it. He was seen at the Clinic today and he is doing pretty darn good. He weighs over 62 lbs now and has no GVH issues. His blood counts were all doing great. His next clinic appointment is not until October! We do need to get him revaccinated and since Rhys will need that too, Devin and Rhys will go onto the same shot schedule so it is easier for Mom to remember. Devin got a 2 month break before the first round starts :)
Devin does have an infection of his ear canal, swimmers ear, and a red swelling on one eyelid. The ear is from swimming so we have him on some drops and an antibiotic for the next week. We are not sure what is causing the eyelid to be red but in any event, the antibiotic will cover that if it is not a bug bite.
For some reason, Devin is very anti school and always looking for an excuse to stay home. He is not very pleased when most of his excuses are rejected and he is sent out to the bus stop.
I am scheduling a meeting with his classroom teacher so we can get him the extra help in spelling and reading that he needs.
As always, no news is usually good news! I did put some pictures up of all 9 of the kids that was taken while our oldest was visiting from Idaho. The link is over to the left and the album is Kids.
Tuesday, July 05, 2005
Busy Month!
Devin has had quite a month since the last update. The biggest and best news is that he passed the 2 year mark from his second transplant on June 9th! We think that is just awesome and are thrilled that he is doing so well.
The week of June 13th, Devin went to Camp Horizon. This is Devin's third year at Camp Horizon so he is an old hand at it. He looks forward to going each year and is already talking about next year. As always, our little media hound managed to be filmed for a local news station. Devin was the third time no hands eating contest winner. This year he ate beans with no hands. In the clip, he said it was great because his parents never let him do that. Yeah, we are kinda strange here...we encourage the use of a fork at meals. We also noticed he was wearing his shirt backwards.
Devin got home from Camp Horizon on Friday and turned right around to go to Webelo Resident Camp down at Camp Boxwell with his Cub Scouts for 3 days. He was a little disappointed to not pass the swim test but he still had a fun time. He earned 5 of the 20 Webelo pins while he was there. Devin was also recognized for being a model Cub Scout when he found a wallet with money in it and turned it in. The Cogioba District Commissioner, Greg Brown, took Devin to the Trading Post for a bowl of ice cream. Ticks and chiggers were abounding and Devin did come home with some chiggers. A little anit-itch medication took care of it though.
Devin had been begging to mow the yard so I finally gave in and let him attempt it. He didn't find it nearly as much fun as he thought, which is an indication that he is able to do it. He mowed a few strips and wanted to quit. I told him since he wanted to do it, he needed to finish the job. He complained but then put some effort into it and finished up. He mowed the smallest section of our yard, the portion we have fenced off for our dogs. He was glad to be done with it and is now dreading when I ask him to do it again.
On the 4th of July, Devin's friend Donna came up to Clarksville so she could take him to the Nashville Fireworks display. Devin had fun swimming and then watching the display from a barge.
Today, Donna brought him up to the Clinic where we met up. Devin has gained weight and now weighs just over 61 lbs. He has no other issues going on and Dr. Frangoul was very pleased with how he is doing. We did get a schedule to start his immunizations again, which Devin was not exactly thrilled to see.
Dr. Frangoul also went over the results of the 2 year post transplant work up. Devin's heart is working just fine and there is no concerns with it. His bone marrow is still 100% Ryan and all his counts are looking great. His pulmonary function has decreased a bit but Dr. Frangoul said this is hardly surprising given all that Devin has been through. Devin is certainly not experiencing any shortness of breath so it is not even a concern but just something to make a note of. His thryroid number is a little bit high, again, not surprising. The high number may be a lab error or it could be accurate. In any event, 50% of kids who go through chemo and radiation end up on thyroid medication. Thyroid levels were drawn again today and we will moniter it. Dr. Frangoul said in some cases, it takes years to really manifest so there is no need to be overly concerned with it right now.
We also discussed the orthodontist and Dr. Frangoul suggested getting an x-ray to look at his permanent teeth. With radiation, sometimes the permanent teeth are damaged or fail to even develop. I know Devin did not get an x-ray at his last appointment but I will check to see if he has had one and if not, ask if they will do one so we can get an idea of what is going on with his adult teeth and if they are damaged.
Basically, it was a very quick appointment and we go back in 6 weeks. See ya then!
Monday, June 06, 2005
Dental Appointment
Devin had a dentist appointment today. He normally doesn't get x-rays unless the dentist sees a need for it so we hoped it would be a fairly short visit. He did get a good tooth cleaning and a general look over.
The dentist said that since his last visit in October, he has two teeny cavities starting so we are bringing him back to have them filled. He has some molars that were partially sealed (since they were only partially out) last time. Those molar are fully out now so when he comes back for his fillings, he will have them sealed the rest of the way. Sealing helps prevent cavities in the molars.
Since he is off all of his drugs now, we can start working on getting his mouth into order. Devin has a crossbite and his mouth is crowded. We can take him to an orthodontist now but really, they can't do much more than the dentist can until he has more baby teeth fall out.
At his next appointment, Devin will also get some impressions made of his mouth so the dentist can build an expander for his mouth. This is an appliance that will be fitted to the roof of his mouth and attach to his teeth. It will have a little key and we will turn it on a regular basis to expand his mouth out, hopefully push some of his teeth into a better position and get him ready for orthodontic work in a few years. Of course, before any of this happens, I will reconfirm with Dr. Frangoul that we do have a green light to do all this. His next dental appointment is not until September so it is not a great rush.
Devin has also been in the pool quite a bit and has gotten so much more relaxed and comfortable in it. We have a new deck built and he will jump into the pool now (unless Dad is around, Dad frowns on jumping in from the deck), he dog paddles and has been working on holding his breath under water. Just a few weeks ago, he didn't even like to put his face near the water.
His next big adventure will start next Sunday, when he heads off for a week of Camp Horizon. He loves going to Horizon and looks forward to going every year. He will return from Horizon on June 17th and then head out almost immediately for Webelo Resident Camp with Scouts. He gets a break from camps until August, when he will go to a week long Twilight Camp for Scouts. Twilight is only for a few hours an evening but still a lot of fun for Devin.
Saturday, June 04, 2005
Relay For Life
Devin took part in the American Cancer Society Relay for Life yesterday. This is a 12 hour event to raise money for ACS. His Cub Scout Pack took part as well. We were out there for 7 hours, walking laps. Devin was a trooper and walked laps, talked to people and played in the field.
Devin was called up as a survivor and presented a survivor medal by the mayor. He was also chosen as one of the survivors who held the ACS Relay banner for the first lap. I am guessing since he was the youngest survivor out there, it was easy to spot him. A local reporter interviewed Devin so our man once more was in the paper. Here is a link to the article as well as a few photos of the event. Bad Mom forgot to bring her camera so I don't have any personal pics.
Young, old cancer survivors continue fight against disease
Thursday, June 02, 2005
100% Donor!
Becky called us yesterday with some results of Devin's 2 year work up. His bone marrow is 100% donor, 100% Ryan. That is fantastic news, just what we wanted to hear. His anniversary is coming up on the 9th. Since we didn't hear results from his pulminary function test or his echo cardigram, we assume the results are fine.
Tomorrow Devin will be taking part in a local Relay for Life, an event to raise money for the American Cancer Society. We will have a luminary in his honor as well as a few for some special loved ones. Devin will also be taking part in the survivor walk and walking as part of a team for Cub Scouts.
Tuesday, May 31, 2005
Bike Rider!
For those of you who have been following Devin for some time, you may recall that following his transplant in 2003, he rode a bicycle for physical therapy (both at the hospital and here at home). He did not like it one little bit and has not voluntarily been on a bicycle since then.
Every now and again, I ask him if he would like to learn to ride a bike. He has always immediately stated he hates riding a bike and has zero interest in riding one or getting one.
Thursday, he came home and announced his friend, Connor, gave him his old bike since Devin didn't have one. This is a teeny bike, more suited to Iain than to Devin. It is way too small for Devin but he was determined to learn to ride it. Greg tried to help him but after one attempt, Devin politely told Greg to take a hike and he would learn on his own.
We got Devin a bike that actually fits him but he wanted to keep using the smaller bike. He really could not get going because it was just too small. I convinced him to ride the larger bike and he finally did. (He was spurred on by Kaitlyn, who also could not ride a bike but decided if Devin was trying, she would too. Kaitlyn was riding unaided within an hour).
He is still not totally confident on the bike and has aniexty over turning unless he has a very clear area but he is riding his bike! He can go from a stop to riding, he can ride down our driveway and he has been riding up and down the street. We have a slight incline right in front of our driveway and he is able to make it up there without stopping too.
He basically taught himself too. He asked Greg to stay away and he would just push himself along and try to pedal. Way to go Devin! I will have to get some pictures of him riding his bike.
Saturday, Devin spent a few hours with the Cub Scouts putting flags on the graves of veteran's. I will post a few pictures from in the next few days.
Tuesday, May 24, 2005
No More Meds!
Devin had his routine, monthly appointment today. He weighs almost 60 lbs...wow! Dr. Frangoul is very pleased with how good Devin looks. After looking at how long it has been since Devin was taken off his prograf, he said we could drop the remainder of Devin's meds. This will be the first time in over 2 years that Devin has not been on any kind of medication.
I didn't realize it but we also had a pulminary function test and an echocardiogram scheduled today. Both tests are fairly quick and we didn't have too long of a wait. I would have brought a book to read if I had known about them though. Devin also had extra blood drawn for his 2 year post transplant labs.
Devin's actual transplant anniversary date is June 9th. We also are able to now go 6 weeks between appointments. Our next appointment will be July 5th.
Next week, I will meet to discuss the evaluation that Devin went through recently. This is a developmental assement to see where Devin stands in his development over where he should be for his age.
Happy Summer!
Saturday, May 21, 2005
New Photos
Devin recently cross over from being a Bear Scout to becoming a Webelo Scout. I added two pictures from the ceremony to his photo album over on the left.
School is out for the summer and we are gearing up for various camps. Devin will be going to Camp Horizon for oncology kids, Webelo Resident camp and a Cub Scout Twilight Camp. He also plans to spend a good amount of time in the backyard pool.
We have an appointment on Tuesday so I will be updating again soon.
Tuesday, April 26, 2005
Three Pounds
Devin had his monthly appointment today. He gained a whopping 3 pounds! That doesn't sound like much but any gain is great.
While we were waiting to be seen, Miss Yolanda, one of his nurses, came over to the clinic to visit. It has been some time since we saw her so Devin was glad to see her. She let us know that Miss Linda, another favorite nurse, suffered a broken wrist and would be back at work soon. Get better soon Miss Linda!
We had a very short appointment since Devin has no issues. His skin is a bit dry and red, from being outside playing but nothing major. We just have to be constant about putting on sunscreen and making sure he has a hat on.
We are coming up on the second anniversary of his second transplant in June. Since he is doing so well, we will begin talking about taking him off the few remaining medications he is still on.
Our next appointment is May 24. I am putting up a recent school picture of Devin in his photo album so you can click it to see it.
Sunday, April 17, 2005
Raingutter Regatta Champ!
This weekend we participated in a Cub Scout camp out. We went out on Friday evening and came back in on Sunday. During the day, the weather was gorgeous. It was sunny and up near 80. Devin's den, the Bears, made pizzas on a grill and we made some homemade ice cream that was a big hit. We went on a nature hike, played frisbee, volleyball and badminton. At night, there is a race track near the park so it was very loud but we still managed to sleep.
Saturday the Pack held the first Raingutter Regatta. Most Packs do a Pinewood Derby car race but since we are a new Pack, we don't have the funds for a track yet. Back in December, each boy in the Pack got a boat kit to make a Raingutter boat. The boats are raced in a raingutter with the boy blowing on the sail. Devin made a catamaran for his boat. It was a double elimination race and Devin ended up losing once but ultimately won overall! He was thrilled when he thought he had second place, he was stunned when he realized he was first in the entire pack. There are some pictures of the event over at the photo link to the left.
Our next appointment will be April 26th.
Wednesday, April 06, 2005
Eye Appointment
Today Devin has an appointment with Dr. Donahue, the pediatric opthomologist. It has been 6 months since he was last checked.
There is no significant change in either the cataracts or in his vision. The left cataract is still larger than the right but there was no growth. Devin's eyesight is just fine as well. Dr. Donahue is actually surprised that there was no growth and that Devin can see as well as he can.
He said that it is possible that the cataracts will never change or that they could suddenly grow and impair Devin's vision. It is how well Devin can see that is the deciding factor on doing surgery. Dr. Donahue doesn't know how Devin IS seeing but he is clearly seeing just fine out of his left eye, cataract and all.
There is no reason to do surgery as long as Devin can see fine. If we notice any change in his vision, then we need to bring him back in. Other than that, we don't have a return appointment until January 2006.
Tuesday, March 22, 2005
Gained Weight
Devin had his regular appointment today. We saw Cassie, the oncologist nurse, rather than Dr. Frangoul. Devin is still doing very well, he has gained an itty bit of weight, nothing significant but any gain is good.
We also are able to drop his magnesium pills! Yay! We did add Zyrtec today since he has been snuffling. We have tried Sudafed, Simple Stuffy and various OTC remedies with no luck. He doesn't have any other symptoms beyond the stuff sinuses so we are hoping the Zyrtec will take care of it.
What a difference in his pill intake daily from not that long ago. He now takes 2 acyclovir in the morning and evening, a Zyrtec in the evening (since it makes him drowsy) and 1/2 a Bactrim twice a day on Monday and Tuesday.
It is Spring Break this week so all the kids are home and visiting with their sister, Kristen, who flew out from Idaho for the week.
April will be a busy month for Devin since he has an opthomologist apppointment, he will be having a developmental assesement and his regular clinic appointment. I hate him missing that much school but it can't be helped.
His next appointment is not until the end of April but everything else takes place between now and then.
Wednesday, March 16, 2005
Bits and Pieces
I had added a few pictures in Devin's photo album, link over on the left. I included some photos of all the kids opening the train set that Friends of Vanderbilt got them for Christmas. They love that train, it is very cool.
Last friday we went down to Vanderbilt to take part in 107.5 FM's Rivers of Hope radioathon. All of us went down and took part. There was a nice little area up on the stage to sit on a leather couch while being interviewed. The kids acted liked kids, that is to say they said silly things and were goofy. They did enjoy themselves.
Mr. Carrol and his wife were there so Devin raced over to say hello. We also talked to Ashley, one of the other children featured in some of the videos Devin has been in.
I need to still download a few pictures that we took during the time we spent there.
Devin is doing very well, we have a regular clinic appointment next week.
Tuesday, March 01, 2005
Here today, gone tomorrow!
Last night, I was a bit concerned since Devin had a rash on his arms. It was limited to just his arms, from the elbow to wrist, and was concentrated near his elbows. It came up very quickly. I had plans to call down to Nashville to get it looked at and made a list of anything unusual that he may have come in contact with.
This morning, I had Devin take his shirt off so I could see how the rash was, if it had gotten worse or even spread. It was totally gone! There was no trace of anything on his arms anywhere. It must have been some kind of contact rash. Since he had no other symptoms associated with this, I decided to leave things alone.
We are scheduled to do a live radio broadcast during Friday evening traffic on March 11. We are going to be broadcasting at 6 pm.
There are two new pictures in Devin's photo album. He spent the night with Donna over the weekend. Donna has a rottweiler puppy named Zeus, who is buddies with Devin.
Tuesday, February 22, 2005
Four Years and An Appointment
Four years ago, today, we made our very first trek down to Vanderbilt. It was then that we were told that Devin had leukemia. In some ways, it seems so much longer than 4 years and in other respects, it doesn't seem like it could possibly be 4 years. We sure have come such a long way and been down some rocky paths. We feel very blessed that Devin continues to do so well and is such a normal kid.
Yesterday, we came down so Devin could tape some spots for the radioathon. We spoke to the DJ's for about 30 minutes. Devin, being that ham that he is, had no qualms about chatting away. The actual radioathon will be held in March. We are going to schedule a time to come down for a live interview during it.
While we were at Vandy, we went up and had a visit with Nurse Anthony and Nurse Linda.
Devin had his regular appointment today. Yesterday, after we got back from Nashville, he was feeling a bit under the weather. Everyone seems to be battling a sinus crud and he is no exception. He was running no fever so I left him alone. His blood work today showed an elevated white count, a sign of him fighting infection. It was not a big surprise but we had him tested for the flu to be sure. That came back negative, he doesn't have the flu. More than likely, it is just a sinus infection. Dr Frangoul said to just give him some Sudafed, Tylenol if he is uncomfortable but to let it run its course. Of course, if Devin develops any other symptoms, then that changes things.
We have dropped several of his medications, he is now only taking Acyclovir and Magnesium daily. He will continue to take his Bactrim twice a week. His skin GVH is almost cleared but it comes and goes. Basically, as long as it is doing this, Dr Frangoul is not overly concerned about it.
Our next appointment will be March 22. I am sure we will have some update prior to that time though, to tell about his live interview and other things going on.
Saturday, February 19, 2005
Radio Star
If you recall, almost 2 years ago, Devin took part in a radio pledge drive. August 23, 2003 The hospital and a radio station are doing this again and contacted Devin to see if he was interested in taking part once more. Monday, we are going down to Vanderbilt so he can tape some spots to air prior to the pledge drive starting. Tuesday he has his regular clinic visit.
Tuesday, January 25, 2005
More Weight and GVH
Devin had his appointment this morning. As has been the trend for the past few visits, our boy has put some weight on.
We saw Dr. Frangoul very quickly. He is happy with the progress Devin is making. The small bits of GVH on his face, which clear up when I apply the topical version of prograf to the spots, are not much of a concern. Dr. Frangoul said if Devin has those small outbreaks and doesn't have to go back on the medication or the medication needs to be increased, that is good. Those little spots on his face will keep the leukemia at bay. Since that is the case, I say let the boy have those little spots on his face forever!
His magnesium level has been within the normal range for the last few visits as well. Since we are tapering the medication that requires the magnesium supplement, we should be able to drop some of his magnesium pills. He is currently taking 12 large magnesium with protien pills a day. I will call tomorrow to check his magnesium level and we may be able to drop him to 10 or even 8 pills a day.
His prograf taper goes down to .2 ml twice a day tomorrow. At this rate, by the 9th of February, he will be totally off his prograf. Once he is off his prograf, we should be able to drop his prevacid and his magnesium. He will have to continue on bactrim and acycolovir for at least 3 months after that. I am not sure about his vefend.
Devin has been testing us lately. Over the weekend, he and his brothers decided it would be okay to leave our neighborhood, get on a major road and walk a few miles to a gas station. They chose to go when the temperature dropped over 14ยบ, down into the low 20's, in an hour and got incredibly cold. They turned around after going about a mile and Devin spilled his guts to us. Why these silly boys thought we would be okay with them doing this is still a mystery. They had told Dad they were at a friends house so now all three are on a very, very short leash. While we are glad that nothing happened to them, we are very angry that they even attempted this.
Devin is doing well in school, we have been working on his spelling and seen an improvement in his spelling test results.
Since Devin is doing well, we are back to visits every 4 weeks. Our next clinic appointment is February 22.
Tuesday, January 04, 2005
Gaining Weight
Devin has gained yet some more weight. At his appointment today, he was just over 58 lbs! This is wonderful that he is gaining weight and getting taller.
Just before Christmas, we had some really bad weather come in. It happen to start on a day that we had planned to go to the pharmacy to pick up refills. The weather closed the pharmacy down where we could not get the refill. I called down to the oncologist on call at Vanderbilt. Luckily, I had an alternate medication at the house that Devin could take until the roads cleared and we could pick up his refill. As it turned out, it was nearly a week before we could get in.
Devin's skin is looking much better, we have been applying a topical cream on any spots that we see and it has really made a difference. Dr. Frangoul was pleased with how his skin is looking.
The prograf taper continues. It has gotten to the point now where his prograf level is not being checked so I don't have to hold it on the mornings he has an appointment. I forgot that we could stop his amoxicillin after his last bottle ran out so I am going to double check with the clinic and stop it. If that was the case, he only took it a few days longer than the date we were told we could stop.
As always, no news is good news. We are just cruising along here. Our next clinic appointment will be January 25.
Saturday, January 01, 2005
