Friday, June 27, 2003

 

Getting there!

Devin continues to do well. He is being taken off most of his medications and today, his TPN was turned off for the vast majority of the day.

His potassium level was elevated today so Devin had an EKG to check his heart, was on a heart moniter the rest of the day and given a lot of fluids to see if it would come down. Too much potassium can cause heart problems. His doctor is sure that the higher level is from the TPN and when it was drawn again later in the day, it had dropped down some.

He nibbled on some food today, not a lot. Not only can one of the antibiotics he was on alter the taste of food, the radiation can as well. He nibbled on some graham crackers, a few corn chips and a teeny bite or two of a bagel.

His counts jumped up again today, as did his neutrophils. WBC was 2.5 (!!), 39 was his PCV and his platelets were at 53...an incredible jump. Dr Frangoul had wanted his neutraphils to get to 500 by Monday, they were at 480 today so barring anything coming up this weekend, Devin will be coming home on Monday.

posted by Devin's Mom 3:14 PM

Thursday, June 26, 2003

 

Still Doing Great!

Devin continues to do very well, surprising his doctors. Most of his medications are being tapered off to prepare him to go home next week.

Devin said he wanted some orange sherbert so Greg went off in search of orange sherbert. There is a Ben & Jerry's right near the hospital so Devin ended up with some lime/mango sorbet instead. He only ate a portion of it. As his meds are tapered off and his feeds are cut back, he should start to eat more.

His counts today were: 1.7 WBC, 39 PCV and 37 platelets. His neutrophils were at 200 and we would like to see them at 500 before Monday.

Wednesday, June 25, 2003

Grrr!

I was not able to access this site yesterday to update Devin's blog here. Oh well, here it is now.

Devin had a slow day yesterday. He got a shower, did his teeth and then just wanted to watch videos most of the day. His NG feeds are up to 30 now since he is tolerating it and his TPN (sugar water with vitamins basically) is being slowed down so it can be stopped. One of his medicines, azactam, was stopped today as well. In the next few days, we will see more and more of his medicines being stopped as he improves.

Despite the fact that Devin had a few bad days, he has managed to gain weight. He is up over 51 lbs now. You can really see the weight gain in his face, it is no longer so thin. He didn't want to eat anything today but his doctors are confident that will change soon.

We got a call from the camp nurse, where the others at at camp. The temperatures are very high right now and high humidity. Kaity overdid it and got a case of heat exhaustion. Her temperature went up to 103. The nurse had her drink a lot of water, gave her some tylenol and Kaity napped for several hours. She is doing fine and did not want to come home. I had already heard from someone that a lot of kids had not been drinking enough water and I bet that it will be pushed a lot more now.

We are still looking at a release date of next week sometime. Right now, we are not sure if we will have to hydrate him at night or not, it depends on how he does in the next few days.

Devin's counts were up some again today. His WBC was 1.6, PCV was 29 and his platelets were 41.

posted by Devin's Mom 8:44 AM

Tuesday, June 24, 2003

 

Bored

Devin is feeling well enough to be bored. Greg spent the day with Devin and they did a whole lot of not much beyond watching some videos.

Greg did manage to coax Devin into eating a few raisins but not much else. Denise was his nurse again and she got Devin up with a rousing pillow fight.

We are starting to see his medications being tapered off and stopped. The big meanie, amphoteracyin, was discontinued today! Whee! Within a few days, he should be wanting to eat some more.

His counts didn't do much today, they were about the same. WBC 1.4 PCV was 31 and his platelets were up a bit at 43.

posted by Devin's Mom 9:12 PM

Monday, June 23, 2003

 

Getting Better!

You can tell Devin is feeling better when he feels confident enough to be rude to his nurse. Devin has more crud and junk in his room currently than should be allowed by law. He keeps a stack of trading cards sitting right where they are bound to be knocked over if you breathe near them. This morning, as his nurse was attempting to navigate through the minefield of Devin stuff, she knocked over the stack of cards onto the floor. Devin told her, in a rude tone, that she needed to pick them up. Denise, his nurse, said it was his responsibility to pick them up. Mom stepped in and told Devin that Denise was there to look after him and if he kept stuff where it could be disturbed while she was doing her job, he needed to move it. Devin was less than happy and still insisted it was her job. He got the option of either picking them up himself or leaving them for Tina, the cleaning lady, to throw away. It was amazing how fast he got out of the bed and picked up his stuff. He also apologized to Denise and treated her like glass for the rest of the day. Well....at least until they had a pillow fight later in the afternoon.

Dr Frangoul came in and was very pleased with Devin's progress. Even though he is not eating yet, he is looking at releasing Devin early next week. We may be able to even by pass staying at the Ronald MacDonald House since Dr Frangoul knows that if he asks us to have Devin in clinic at 8 am, we will be there at 7:45.

When Devin relapsed, there was another Devin who was in the room next door to us, newly diagnosed with leukemia. Devin2's mom and I would chat briefly in the halls as we got ice or changed out movies. When Devin2 was released, they gave our Devin a big basket of various snacks. Today, a nurse brought in a HUGE basket of stuff and it was from Devin2's family. There was all kinds of snacks, candy, popcorn and drinks as well as a long distance calling card. Devin was interested enough to eat a handful of popcorn, a vienna sausage and a peanut butter cup (a small bite sized one). It is not much but it is a start!

His counts today were WBC 1.4 PCV 31 and platelets were 30.

posted by Devin's Mom 11:18 PM

Sunday, June 22, 2003

 

Up again!

Devin was feeling good today, no fevers and actually ate part of a popsicle.

Today was the beginning of the American Cancer Society's Sibling Camp. We took Nicholas, Ryan and Kaity down there for their week. We will be able to pick them up on Saturday.

Since they were going to be gone for an entire week, the whole family trooped down to spend time with Devin. It really perks him up to have everyone there, even if they can't get on his bed right now.

His counts are still on the rise, his WBC was 0.9, PCV was 31 and his platelets were 27. We didn't have a neutrophil count back yet so it will be interesting to see what they are like tomorrow. We really hope he is on the way back home soon.

posted by Devin's Mom 9:39 PM

Saturday, June 21, 2003

 

Moving Up!

We are finally seeing some upward movement in Devin's counts. Due to a boo boo earlier in the day, Devin's blood was not sent to the lab at the regular time and so were redrawn. That meant we didn't get what his counts were until later in the day but it was fantastic news when we did get them. All on their own, without any help, his WBC jumped from 0.2 to 0.7!!! This is just great news!

Now, we need to get him eating some food again. If he continues to have his counts rise and doing well, his meds should start to taper off and we can get an idea of when he will be released.

His PCV was 31 today and his platelets were 28.

posted by Devin's Mom 11:42 PM

Friday, June 20, 2003

 

Circling Around

Devin continues to be in the same holding pattern that he has for the past few days. He is feeling better, I think being off the morphine is helping. I also wonder if the morphine is what is making him nauseated since it dropped off significantly as soon as the morphine was reduced.

Devin had been scheduled for a CT scan today but that was cancelled since he had no fever for over 24 hours. He actually ate some actual food today, he had a handful of raisins.

His counts are about the same really, some changes. His WBC remains at 0.2, his PCV dropped to 24 so he got blood today and his platelets were at 44. He may get platelets again tomorrow, depends on how low they drop between now and then.

posted by Devin's Mom 10:23 PM

Thursday, June 19, 2003

 

Still the Same

Overall he is doing well and really, there is not much to report. Still puking, still doing very well in the grand scheme of things. He is now off morphine and got platelets today. Really, there is not a lot more than that to say. His counts are about the same as well.

WBC 0.2, PCV 26 and Platelets 14

posted by Devin's Mom 10:56 PM

Wednesday, June 18, 2003

 

No real change

Today was a whole lot more of the same. Devin got a little nauseated when he would get out of bed for longer than a few minutes. He had a fever overnight but since it follows one of his medications, the doctors think it is a secondary thing.

There is not a lot to report while we are in this waiting game. He will probably get some platelets tomorrow and possibly blood as well. WBC 0.2 PCV 23 Plts 23

posted by Devin's Mom 11:17 PM

Tuesday, June 17, 2003

 

Holding pattern

We are still in the same kind of holding pattern. Devin is certainly feeling better but overall is just kind of here. He is not getting sick but he is not making drastic improvements.

He felt well enough to pester his dad and bounce around some though. Overall, it was an uneventful day.

His counts seem to be in a holding pattern as well. WBC 0.2 PCV 28 Plts 27

posted by Devin's Mom 9:32 PM

Monday, June 16, 2003

 

A Small Step

Although I thought today was going to be a repeat of the past few days, Devin surprised us. He had some nausea and vomiting early in the day but by 11 am, he was doing much better.

He was willing to take a shower without collapsing into a heap of jelly, wailing about how he didn't want a shower. He brushed his teeth and did his mouth care willingly and just had a grand day. He played with his toys, talked to Kierynn and felt well enough to hide from one of his doctors.

Dr Frangoul came in and was pleased at how much better Devin's mouth looks and commented on Devin's hair. Despite the radiation and chemo, Devin still has some hair on his head. It must be pretty strong hair. We are just in a holding pattern right now, waiting for signs that the bone marrow is starting to engraft.

So far, none of his blood cultures have grown anything and if he doesn't get a fever overnight, we will look at cutting back on some of his medications. He is currently taking: acyclovir, diflucan, cyclosporin, levoquin, clindamycin, aczatam (or something similar, I would have to look), amphoteracin, and reglan. He gets Zofran or Adavan for nausea as needed and also morphine for pain as needed. Most of the other stuff is antifungal, antirejection or antibiotic. When he is released, he should only be on acyclovir, diflucan and cyclosporin.

Tomorrow we are going to start his NG feeds back at a low rate to keep his gut working and to see how well he can tolerate it. He has always tolerated Pediasure and although the stuff he was getting is more mild, he was getting sick with it. I spoke to Dr Ho, one of the oncologists, who said that it was reasonable to attempt the Pediasure before going totally to TPN. If Devin can tolerate the Pediasure, that would be good. The stuff he had been getting, he always manages to lose it shortly after starting it.

Devin got blood today since his WBC dropped to >0.1...about as rock bottom as you can possibly get. His PCV was 22 and his platelets were at 35.

posted by Devin's Mom 11:01 PM

Sunday, June 15, 2003

 

More of the Same

Devin really is not doing any better or any worse today. He was feeling much put upon today, by the world in general and us specifically.

He was just feeling rather crummy and didn't want to do much of anything except complain. He was started on amphotericin again and this time is given demoral prior to it. I am not sure why it is noted in his chart that he gets demoral before since he doesn't ever have a reaction to the ampho.

Devin was not able to keep any of his NG feeds down at all so they were stopped once again. He will be getting TPN which is basically sugar water with vitamins and minerals added to it to maintain his weight.

HIs counts today were: WBC 0.2, PCV was 22 and his platelets were 64.

posted by Devin's Mom 10:46 PM

Saturday, June 14, 2003

 

Double Yuck!

Devin has been running low grade fevers for the past few days and as well as vomiting. Blood cultures were drawn again today to see if anything is going on. As Devin told me, "I am just not feeling like myself right now."

Devin still has his narcotic pump but apparently some kind of state inspection is going on right now. Those inspectors didn't like the idea that a 7 year old could administer his own narcotics so it is disabled. If Devin needs it, he has to call his nurse in. The pump is set up so that he can NOT get more than a safe dose and it is also locked with a key. Only the nurse can actually access the medication or change the dosage. It just makes more work for the nurse to have to come in, unlock the case on the pump, administer the dose and then lock everything back up. Of course, these same inspectors won't allow Devin's name outside his door. There is a card with our last name and his doctor's name but we can't have "Devin" out in the hall. Never mind anyone can look into his room and see Devin in 18" letters across a wall.

Everytime Devin was hooked up to his NG feedings, he would get nauseated and would vomit. They were turned off and I am not sure what they plan to do. I think it is the specific formula he is getting that is the main culprit, it is new stuff that he has never had before and he is not tolerating it very well.

His magnesium was a bit low so he got a dose of mag today as well as a new antibiotic called clindamycin. He has a suction machine hooked up so he can clean his mouth out without swallowing. His chief complaint is still his throat. Most of today, like yesterday, was spent sleeping.

On the home front, we have a 28' circle in the backyard for a pool. We were supposed to have a pool set up in it but it was discovered that our pool had been mistakenly installed in another city and we had been sent the wrong pool. The other family got to keep our pool (which is much nicer than the one they had paid for) and we get to try again on Monday morning with the correct pool.

Devin was transfused with platelets today since his dropped to >10. His WBC remained the same at 0.2 and his PCV went to 24.

posted by Devin's Mom 9:51 PM

Friday, June 13, 2003

 

Blah to Yuck!

Yesterday was a blah day, today was a yucky day. Devin's throat has been bothering him so he was set up with a narcotic pump that allows him to self medicate when he needs it. Of course it is set so that it is not possible for him to overmedicate himself. On top of his throat, he was feeling nauseated and vomiting most of the day.

A lady from the Make A Wish Foundation came by to visit Devin and brought him a slew of things. She visted him yesterday and brought stuff then as well. Since a pet spider monkey got the thumbs down from both Mom and Dad, Devin told her that he wanted to go on a cruise to the Bahamas. I have no idea what is going to happen next with all this. We had wanted to wait until he was feeling better but MAW was contacted without our knowledge.

Since Devin was not feeling good most of the day, it was very quiet up here. He and Kierynn slept the vast majority of the time.

Someone asked what normal counts are like since I always post Devin's. These are the averages for them. WBC average is 4.0-11.0 ...Devin's were 0.2 today. PCV average is 42-50....Devin was at 26 today. Platelets average 150-400....Devin was at 23 today. I am expecting him to drop enough to be transfused tomorrow.

posted by Devin's Mom 10:40 PM

Thursday, June 12, 2003

 

Blah!

That pretty well sums up today. Devin was just kinda blah. He didn't feel bad, he didn't feel good. He just wanted to lay around and do nothing.

His blood cultures came back as positive for VRE, a vancamyicin resistant something...a kind of virus. The nurses have to be gowned and gloved and we do as well if we go out of his room (other than going home). It should clear out fairly quickly.

Devin's pet hamster, Blizzard, died today. She was a white Siberian Dwarf hamster that he got last March. She was almost 18 months old which is a decent life span for a dwarf hamster. We still have Sandi, Blizzard's sister who seems as spry as ever. I am not expecting her to make it a whole lot longer...maybe a few months.

The postcard project has taken off with leaps and bounds! One of my friends who frequents a board with me, she let her father know about Devin. In turn, he has passed along the request to many people he knows. In the past few days, we have gotten post cards from all over the world and the US. Tomorrow we are going to be going through them and looking at all the places.

His counts today were: 0.2 WBC 26 PCV and 46 for his platelets.

posted by Devin's Mom 10:12 PM

Wednesday, June 11, 2003

 

It was coming

We knew it was bound to happen but it came about sooner this time. Devin has his NG tube back in. Yesterday, he didn't drink or eat nearly enough. The liquids are more important so I stood over him and nagged him into drinking a carton of juice. It was still not enough so down went the NG tube.

That put a damper on most of the day since he sat and sulked after. He also was not feeling his best, nothing specific, just an over all blah feeling. Even having Nicholas up there didn't really motivate him to move a lot. Later in the day, we found he was running a very low grade fever, 100.5 so he got some tylenol for it. Blood cultures were drawn to check for anything that may be causing the fever.

His counts for the day were WBC 0.4 PCV was 27 and his platelet count never came back.

posted by Devin's Mom 11:06 PM

Tuesday, June 10, 2003

 

Feeling good

Both boys were feeling good today. We woke up to Ryan racing down the stairs like he always does, complete with the leap off the bottom three. He did complain a bit of soreness but overall, he was acting totally normal. We have some painkiller for him but so far, he has not needed it.

Greg went down with Ryan, since he had to have his dressing removed, and Nicholas to spend the day with Devin. Devin is also bouncy and doing well. Dr Frangoul commented on his energy level at this point in the transplant is remarkable. The chemo he got is some pretty nasty stuff and combined with the radiation, Devin, by all rights, should be laying in bed feeling miserable. He still has hair too! We do expect that to be lost shortly though.

Ryan got the once over by Dr Frangoul and was given a thumbs up. Ryan surprised Dr Frangoul too by how much he is moving around and doesn't seem the least bit put out by yesterday's surgery.

We expected his counts to rise a bit following the transplant yesterday and they did. His WBC jumped to 1.3, his PCV went to 30 and his platelets dropped a little to 128.

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 but 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.

Sunday, June 08, 2003

Day -1!

Today was a day of rest as far as medications went. Devin was only getting his regular medications, nothing major today. He was put on cyclosporin, an antirejection drug today. He was in a snotty mood most of the day too.

I brought Kaity down to visit him and he just made it his goal in life today to pester her. She could not breathe without him complaining about it, giving her dirty looks and telling her to stop it. He was just being ugly...little creep. He was feeling fine, just in a foul mood for some reason.

His counts today were WBC 0.7, PCV 23 and platelets 174

Saturday, June 07, 2003

Day -2!

Greg brought the boys down to spend the day with Devin and apparently they drove everyone insane with how wild they were acting.

Today was the last day that Devin got cytoxin (not sure still on the spelling). Now that he is finished getting it, some of the fluids he has been getting can be slowed down. The fluids are to insure that the chemo drug doesn't sit in his kidneys for an extended period of time.

Not a lot went on today really. We are basically in a waiting mode, waiting for Monday.

Devin's counts today were: WBC 0.9 PCV was 27 and his platetes were close to 200 but we didn't get an exact number. Those are really good counts considering what he has just had to endure.

posted by Devin's Mom 7:05 PM

Friday, June 06, 2003

 

Day -3....Finally!

We brought Devin down early this morning so he could get fluids prior to his chemo being started this afternoon. We had the option of admitting him yesterday after the last round of radiation but he wanted to come home.

We arrived up in the room by 8 and he had a note waiting for him from one of his nurses, Miss Toni. She left him a note since she will be out on vacation for a week or so. Devin got hooked up to some fluids and promptly went to sleep. I tucked Kierynn into the bed next to him and had two sleeping beauties for most of the day.

While they slept, I cut out a dress for Kierynn and read a book. After he had gotten fluids for a few hours, his chemo was started. He is getting a drug called cytoxin (not sure of the spelling). This is a fairly harsh drug and he will be flooded with fluids to force him to pee...keeping the drug in his kidneys as little as possible.

A bunch of cultures were drawn but I don't have his counts for the day.

Here are some pictures of Devin getting his full body radiation

posted by Devin's Mom 10:40 PM

Sunday, June 01, 2003

 

Winding down

Devin's time at home is coming to a close as we are getting closer to his transplant. The past week has been spent in getting various tests done to make sure he is in good health going into his full body radiation.

One of the tests showed that there was a question on his kidney function. We trooped down to Vandy for a test that required some medicine to be injected into his arm and then four different blood draws over the course of 3 hours. While we were there that day, we also had Devin get a more comprehensive heart scan since there was a question on that as well.

The day following this, we had our regular clinic visit. Dr Frangoul looked rather sheepish and told us that they had made a mistake with the kidney test. His first test, that raised the question, had been entered wrong and there was actually no question on his kidney function. The second test, the GFR, was not needed at all. It is much better to be sure than to go into this and discover something that needed more attention. His second heart test showed that his heart is functioning very well. With all the chemo and medications Devin has gotten over the past few years, they are always making sure that there is as minimal damage as possible.

After discussing things with the oncology transplant coordinator/nurse, his doctor and the radiation oncologist, we decided to have Devin do his radiation as an outpatient. His times are at 8:30 am and 2:30 pm. We have a room reserved for us over at the Ronald MacDonald House to hang out in during the 6 hours downtime. We could drive back and forth but it is 120 miles round trip. The RMH gives us a room with a TV so we are not just lurking about the hospital. This also puts us right there in the event we need something. Although he will be outpatient, he already has a room reserved for him up on the floor and if something comes up, we will go straight there and by pass the ER.

We took the kids in and had group pictures taken of them yesterday. You can see them by clicking here.

Tomorrow is when we start his full body radiation, we have to be totally sure we will be doing the transplant. If Devin goes through the radiation and for some reason, we did not do the bone marrow transplant, his chance of relapse is 100% and he probably would not survive longer than 6 months. The doctors want us to be very sure we want to go through with this. Of course we do, we know that a bone marrow transplant is the only option that makes sense. Ryan is going to be kept close to home and as healthy as possible until next week when he donates.

We are on the countdown now...today is Day -8.

posted by Devin's Mom 9:15 PM