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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Wednesday, April 30, 2003
Mornings are the worse
At least as far as Devin's sore throat is concerned. His room is dry to begin with so he wakes up with a dry, sore throat. He gets some pain medication and within a few hours, feels fine once more. Since he is still trying to feel better about the time his teacher normally comes in, that doesn't bother him at all. I asked her today, Miss Rebecca, to come in the afternoons now.
In addition to his other mouth stuff, we have added some sodium bicarbonate to the mix. He uses some little sponges to scrub his teeth and tounge and then swish and spit. Devin thinks it is grossly unfair so I will bring a toothbrush up there and brush when he does. He brushes and does mouth care 4 times a day, it is not like he is being asked to do it hourly.
Since we have had issues with soggy grilled cheese sandwiches, we sought a better solution today and think we have it solved. Our electric skillet made the trip down there today and I cooked his sandwich right there. He got a hot, non soggy sandwich and ate it all. I also brought some eggs down so I can make him an omelet. He had a fairly good good day. He ate the grilled cheese, an entire container of strawberry yogurt and 2 cans of Pediasure and worked on a third can. I really think if we can keep him eating, we will be able to avoid the NG tube.
I found out today that he was put on Levoquin, an antibiotic, over the weekend. I really wish they would TELL us when they put him on something new or take him off something. I just like to keep track of all his medications so if we have a reaction, I can help look for what may be the cause. The weekday nurses always tell me and as soon as they come in the room, they tell me what they have since they know I ask...every single time.
His WBC was up to 0.2 today. Nothing to get excited about until it continues the upward trend. His PCV was the same at 28 and his platelets went down to 15. It would be nice if his counts were beginning their upward swing...we will keep you all posted!
Tuesday, April 29, 2003
Ho hum....
Not a lot went on with Devin today, he was rather subdued again. He woke up with a sore throat and got some pain medication for it. The doctors are now thinking it is from his persistant cough rather than mucousitus. His chest x-rays are coming up clear so they are not sure why the cough is hanging around. Since he has started his swish and spit routine, we will keep doing it just to hold off any mucousitus that may start up.
Devin spent the majority of the day just sort of watching TV, playing with his Nintendo and doing not a lot. One of his nurses came in and read to him. Devin likes being read to. We finished reading the first Mrs Piggle Wiggle book and are currently reading Harry Potter and the Prisoner of Azkaban.
Devin didn't eat much today and said he wants a grilled cheese sandwich. The problem with grilled cheese is that it gets soggy quickly. Tomorrow I plan to bring down a plug in frying pan and everything needed and cook his sandwich right there in front of him. Hopefully that will intice him to eat it.
His counts remained about the same today. WBC was 0.1, PCV was 28 and his platelets were down to 19. Anthony is his nurse this evening and they usually have fun, doing boy things.
Monday, April 28, 2003
Magic Mouthwash
Even though we have managed to avoid it through 4 previous rounds of chemo, a bone marrow transplant and two rounds of chemo this time, it looks like Devin is developing mucousitus (I have no clue if that is spelled correctly). He was complaining of a sore throat this morning and was crying, very unsual for him.
After looking in his mouth, with a flash light, the official opinion is mucousitus. He has little dimples on the side of his tongue that generally will crack, peel and then ulcerate....causing major pain. If it gets bad enough in his throat, he will have to be suctioned out.
As it stands right now, we are pushing brushing his teeth regularly (Devin was already doing that) and he has a few things to add to his mouthcare routine. First is the stuff we call Swish and Spit. I will have to look at what the actual name is but it is some stuff that he swishes around in his mouth and then spits back out. The second stuff is nicknamed Magic Mouthwash. It consists of Maalox, Liticain and Benadryl mixed together. It coats, sooths and sorta numbs his mouth and makes Devin able to eat. He can swallow it if he wants to but so far, it is Swish and Spit #2. We are hoping that we can halt the progress of mucousitus by starting now. Devin was only in pain a very short period of time when he first woke up and a Tylenol took care of it.
Since his throat did hurt, he was not very interested in food today. He did drink 3 cans of Pediasure, maybe 1/2 cup of macaroni, a cheese stick and a piece of chocolate. He was not interested in doing his school today, his teacher came in right when he was hurting so I worked with him later in the day.
For all that he was not himself and much quieter today, he was still feeling good enough to bounce around some, blow bubbles, play his Nintendo and browse eBay.
Devin was also a hit today with a straw. One of the night nurses who works on the weekend, Anthony, showed Devin how to make incredibly rude noises by putting a straw under his arm and blowing. Trust me when I say it is an authentic sound. Devin took great delight today in demonstrating this for his day nurse....who immediately tried it out herself. It was the most hilarious thing to see his nurse call in 2 other nurses and the four of them (3 nurses and Devin) all making the most rude noises with straws. The entire gang of them fooled a few doctors and other nurses, as well as some people passing by who could not understand the wild shrieks of laughter coming from the room. I am sure other parents on the floor are wishing Devin (and Anthony!) elsewhere since naturally the nurses taught the trick to several other children on the floor. Ack, who knew a straw and too much time on your hands would be so amusing...in a sick kind of way ;)
Our bishop, Bishop Tripp, visited Devin this afternoon. Bishop Tripp has a lovely singing voice and brought along his guitar. He sang several silly songs for Devin and then some Primary songs. He also said he made a CD with about 30 songs that he would bring up to Devin. I think I will bring up our Primary song CDs as well. Bishop Tripp stayed for about 45 minutes, singing and chatting with Devin. There is another young man from our church at Vanderbilt right now as well so he was a busy guy visiting today.
Devin had no fever at all today and his counts were not much off from yesterday. WBC was 0.1, PCV was 27 and his platelets went to 26.
Hopefully he will bounce back and be a chipper guy again tomorrow.
If you read A Day in the Life of Devin, please don't be afraid to leave us a message. We have no idea who all reads this unless you do. Devin likes to have the comments read to him and it also lets us know that people are actually reading this :)
Sunday, April 27, 2003
Cruising Along
Overnight, Devin had a fever that got up to 103.7°. After getting some Tylenol, it went right back down. It is doubtful that this was a delayed reaction to the blood transfusion since he tends to develop overnight fevers following chemo. This morning he was his normal, chipper self.
Greg, Nicholas and Ryan spent the day down with Devin, who acted like he would normally do at home. They did his homework, read a story in his reading book and then played Nintendo and watched some TV.
Devin had requested macaroni and cheese, a cheese burger and refried beans be brought down to him. He did eat most of it. The cheeseburger still had some left but he also ate a big apple, some cake and a few cans of Pediasure. He did well eating today.
His counts for the day were WBC >0.1, PCV went up to 27 and his platelets were at 36. Both his PCV and platelets will drop again tomorrow since the rise is due to the transfusions he got yesterday. He may or may not get a transfusion, depends on how low they drop again.
It was an uneventful day for Devin. Tonight will be one of the few nights that he doesn't have anyone spending the night with him. He actually told Greg that he was waiting for Greg to go home so he could raise the bed up as high as it goes. He loves to play with that bed, raising it and lowering it, putting the foot up, putting the head up and making him sink into the middle.
Saturday, April 26, 2003
Bounced Right Back
After the spectacular reaction that Devin had to his blood transfusion yesterday, you would have expected a somewhat subdued boy. Yeah, right.
Devin bounced right back and was bright eyed and bushy tailed all day long. He got some platelets this morning, premedicated with Benadryl and had no reaction.
Kaity came to spend the day with Devin and the two of them got along fairly well. We had a few minor tiffs but nothing too bad. They played Nintendo, did some crafts, played some games and argued. They sat on Devin's bed and looked at his I Spy quilt and had a mini pizza party. One side benefit of having Kaity there is that Devin would eat stuff just out of spite, so Kaity could not have it. (Kaity had plenty to eat, we have a plethoria of snacks in the room as well as the ability to get a ton more) Little creepy man ;) He did well eating though...now to work on fluids a little more.
Devin had a stack of letters and cards on his table that I picked up to see who had written to him. I didn't recognize the name so I looked at the envelope. Well someone goofed up because although the cards were sent to Devin...they were sent to a different Devin! The other Devin went home earlier in the week and will be back, probably next week. I feel badly that we accidently opened his mail but I have to wonder at who gave it to our Devin. It was clearly not a P after his name and it had the other Devin's room number on it!
One of the doctors came in and said that it appears the problem with the transfusions yesterday were from an antibody being present in Devin's blood. When a transfusion is given, the blood's antibodies are checked against the person getting the blood. Major antibodies are checked before the blood is given. I have always referred to Devin as my sensitive guy and apparently that extends to his blood as well. From now on, when he gets a transfusion, the donor blood will be checked for major antibodies, not so major antibodies and then be put through a special washing process before being given to Devin. The wash is not commonly done but since Devin had the problem yesterday, the doctors would rather ensure it doesn't happen again. While I am typing this, Devin is currently recieving some washed blood and has not reacted to it. He was premedicated with both Benadryl and Cortisone. Usually blood is run over a period of 2-3 hours (meaning he gets the bag of blood over that time span) but he is getting it run a bit slower tonight.
His counts today were: WBC 0.1...that is about as low as it can go. PCV was steady at 21 but that was expected since he did get some blood yesterday. His platelets were down to less than 10. They will be higher tomorrow because of the transfusion he got today.
Friday, April 25, 2003
Hives, welts and rashes, oh my!
The day started out normally enough. Based on his counts today, I knew Devin would be getting both a blood transfusion and a platelet transfusion. His teacher came in about the time he was scheduled to get blood. Since Devin reacts to blood products (he gets little itchy bumps), he is premedicated with Benadryl. Benadryl normally puts him to sleep but his nurse premedicated him and he finished his school work.
When his teacher left, his blood transfusion was hooked up and the nurse watched for the first 15 minutes. It is standard practice to watch those 15 minutes because generally if someone is going to react, it is then. Devin didn't react, he was just a little sleepy. About 10 minutes later, he complained that his ears, deep inside, were itching. We called the nurse in and we discovered that Devin had welts, hives and a rash all over his body...spreading quickly. Miss Linda slowed down the blood and gave him another dose of Bendryl. This pretty much put him totally out, asleep. Linda also called in the resident on duty who looked over Devin carefully. The blood was slowed down to a trickle. Within 10 more minutes, Devin began to cry because his nose was blocked to the point he could not blow it or breath well. He could breath fine, just not through his nose. Again, his nurse came in along with the resident. This time, the blood was totally stopped. He was given some hydrocortisone to help with his hives, welts and rash. After much discussion among the resident, the nurse and the pediatrician, blood was drawn from Devin and sent for cultures. The remaining blood that was to be transfused was sent off for testing as well. It was thought perhaps something in the blood, an antibody, was causing the reaction in Devin.
Several hours passed, Devin woke up and actually ate. His welts and hives had pretty well gone away but his rash, that began as red spots, had connected so he looked similar to a boiled lobster...red all over. He felt fine though and was not itchy.
The lab finally had results which boiled down to that they don't know why Devin reacted and there was nothing in either his blood or the blood he recieved that indicated why he reacted.
Once again, Devin was premedicated, he got both cortisone and benadryl. Linda got a new bag of blood (the blood expires after 4 hours and this was about 7 hours after he first started getting blood) and we gathered around him, watching him like a group of vultures in the desert waiting for a rabbit to die :) Within the first 15 min, he had not reacted at all. Thirty minutes into it, I thought I saw new blotches on his face and welts on his leg but again, it was not spreading or bothering him so we continued on. This transfusion lasted about an hour before it was stopped once again, Devin was taken totally off it and the blood (and more cultures from Devin) were sent off.
So at this point, we are not sure *why* Devin is reacting so strongly to blood but based on that, he didn't get his platelets today either. Despite the low counts, he is acting and feeling fine so the doctors are comfortable in letting it go today. I am sure they are working to find why Devin is reacting and what we can do about it.
His WBC today was 0.2, his PCV was 21 and his platelets had dropped to 11. Normally his both his PCV and plateles would be up tomorrow from the transfusions but since they were halted, it should not be up. I think he got almost half of the total amount of blood he was scheduled to recieve though. Hopefully we will have some answers tomorrow.
For all it sounds horrific, it was a relatively quiet day since Devin slept most of the time due to the medications. His great grandma and his great aunt made him an "I Spy" quilt and he loved spending time today finding things on it. They printed pictures of the family and included them in the quilt as well. Everyone (and today, it was Grand Central Station) who came in the room immediately commented on the quilt.
It will be interesting to see what happens tomorrow!
Thursday, April 24, 2003
Ka-Boom!
That was the crash made by Devin's counts today. As predicted, his counts took a nosedive from yesterday. Usually I give these towards the end but since it was about the most exciting thing to happen, it is near the top. His WBC zoomed down to 0.3, his PCV went to 22 and his platelets were at 26. It would not surprise me in the least for him to be transfused with both blood and platelets tomorrow. Dr Janco, the onclogist and Dr W, the resident, both are amazed at how robust and energetic Devin is. With his counts being what they are, they expected him to be languishing in bed.
Devin got to leave his room today to go have a chest x-ray. Ever since he was admitted, Devin has had a persistant cough. It has been watched and today, it was decided to get yet another x-ray since it is sounding a bit worse. Greg brought him back to his room.....via a short detour around the hospital and gift shop. Devin really wanted to take a stroll (in a wheelchair) outside but it was raining. He was masked for the trip but it did him a lot of good to get out of his room for a little while.
Today, Nicholas turned 10 years old. I don't think he should be allowed to be 10 already but the calender doesn't lie. He brought cupcakes to share with his class and we went to Red Lobster (Yuck!!) for dinner. This weekend, at some point, he will get to go shopping for his birthday.
Devin did eat some today and his weight has been steady the past several days at 21.5 kg (47.3 lbs). If we can keep his weight steady and he keeps eating enough, we can avoid having the NG tube put back in.
Wednesday, April 23, 2003
Second verse, same as the first
Have we gotten into a rut here? Ruts can be good and in this case, it certainly is. Devin had a great day today. He was upbeat, chipper and full of vim and vigor. He worked hard for his teacher and got a lot done.
He also was in a crafty (as in arts and crafts) kind of mood so Kierynn and I went to the playroom in search of supplies. The playroom has all kinds of things in there, including the essential arts and crafts materials. I brought back foam shapes, craft sticks (also known as popsicle sticks), glue, sequins, paper, and eyes....yes eyes! We decided his window in the door to the hall looked a little plain and needed some help. We made a lovely multicolored picket fence out of craft sticks complete with a foam shape dragonfly, butterfly, spider and snake. It looks very cheery and spring like. Of course, the effect was somewhat dampened by the sign Devin helped make on the computer.
He and one of his nurses played I Spy earlier in the day, reading the book I Spy Spooky Night. Devin helped design a sign for his door that included a skull with crossbones that says in big, bold letters: Beware! Enter if you dare. Scram! Don't come back! or something like that. He did clarify that it is meant for strangers, not anyone who is supposed to be coming into his room.
Devin also ate very well today. He had ham, he had chips, he had jelly beans and drank Pediasure. He wanted some Rip 'Em cheese sticks but we were out of them.
As expected, his WBC count from yesterday was more than likely a lab error. Today, his WBC was 1.7...more where we expected it to be. His PCV was 24 and his platelets continue to drop and were at 48. Dr Janco, the oncologist on the floor this week, came in and spoke briefly. Basically Devin is doing well and we are just hanging out until his counts rise.
At one point, Devin was standing at his door and bouncing in the window, grinning and waving to anyone in the hall. One of the residents, who does not have children, asked his nurse why Devin was doing that. Why...because he is 7 years old and bored! He enjoys bouncing in the window. His nurse came in and joined him and they both stood there hopping like a pair of bunnies for a few moments. Then they danced around the room a few times. Yeah....Devin is really feeling badly these days :)
Tuesday, April 22, 2003
Holding Steady
Devin had yet another uneventful, great day. He had made the request of a slew of food that he wanted brought to him. We want him to eat so Greg brought down: ham, tortilla chips, deviled eggs, noodles and cheese. Devin actually ate all the ham, about 3/4 of the chips, some of the noodles and a bunch of cheese. He didn't eat the eggs but that is okay. I did find out WHY he was eating so well today...his nurse was bribing him with Pokemon cards. Everytime he would eat a certain amount of food, she would give him a Pokemon card.
Devin was under the impression, we are not sure how, that there was a possibility he would be released today. That took us by surprise since we expect it to be several weeks before that happens. We spoke to his doctors and they confirmed that it will probaby be several more weeks before he is released. Of course, his counts are still high and we keep being told they will plummet soon but so far..it has not happened. His WBC today was 4.3!!!! We are not sure if that is a lab error or what but I have never seen his WBC jump like that even getting the GCSF shot. It will be interesting to see what it is tomorrow. His PCV is unchanged at 24 and his platelets went to 84.
Dr Frangoul, who will do the transplant, came in today. Assuming that everything goes well, we are looking at sometime after mid-May for the transplant. An exact date is not possible yet since we don't know when his counts will recover this time. We let the counts recover, he comes home and then we bring him back for meds that make his counts crash again. Dr Frangoul is a great guy and we are very pleased with his treatment of Devin. An interesting bit of trivia here....Devin was delivered at birth by an Iraqi lady, Dr Hana. Devin is now being treated by Dr Frangoul, an Iraqi born doctor :)
Tomorrow Devin has requested more chips, some sea shell noodles and cheese sticks. I have Pokemon cards ready to bribe him with too.
Monday, April 21, 2003
Unhooked!
Devin was unhooked from all his IVs and everything today....to see how he would eat and drink without any additional fluids. Before today, he was on pretty much continual fluids through his chest line. Devin knows that if he doesn't eat that the NG tube will make a reappearence. He did eat some today, not enough though. He made the request for some ham and deviled eggs so a plate will go up in the morning with it.
Since he was unhooked, he bounced all around the room, crawled under the bed, behind the nightstand, jumped on the bed...in short, behaved like a goof ;) He wanted to make a model of the solar system so I hiked down to the playroom to see what they had to use. We ended up making a model using foam paper, glitter pens and tape. It was a challenge to find round objects in the room to trace the planets. We ended up using a can of Pediasure, a cup, a flashlight, his water jug, some round thing from his wall and a plate to trace the various planets. The original idea was to hang this solar system from his ceiling but that was quickly scrapped and we ended up taping it up on his wall instead.
Devin's counts for the day still remain high. His WBC was unchanged at 1.5, his PCV dropped to 24 and his platelets went to 113. Today started his GCSF shots as well. This shot helps to stimulate his immune system to recover. Even though his counts remain high, the doctors are expecting them to plummet any day now. In the last round of chemo, Devin had 2 weeks of GCSF shots before his counts started to rebound.
I tell you, if you didn't know he had anything wrong with him, you would think he had no reason to be in the hospital. Days like this, where he is feeling great and bouncing around, are just wonderful.
Sunday, April 20, 2003
Plastic Egg Overload!
Overnight in Devin's room, there was an explosion of plastic eggs filled with candy. When he woke up this morning, there was a note from his nurse, Miss Toni, and the Easter Bunny telling him that there were 21 eggs hidden in his room. Miss Nicole, his nurse for the day, unhooked him from his IV pole so he could hunt. He found all of them fairly easily although the one in the shower remained unfound the longest.
In addition to all his plastic eggs, he also got a basket of things from home. I think his favorite item was a bubble blower that puts out a bunch of bubbles. The entire family came down to visit him and Nicholas spent most of the day playing with him.
Devin had a pretty good food day. He ate a muffin at breakfast, sampled various things from his basket, drank 3 cans of strawberry Pediasure and then had ham for dinner. Kristen is spending the night with him and brought him a plate of dinner from home.
I took some pictures of his room today to show people his home away from home. Check out Devin's Vandy Home There is one picture that Devin considers gross but it is not every day you pee blue ;)
Today was his last dose of Mitoxantrone, the blue chemo. Now we are just in the waiting game, waiting for his counts to drop and then climb back up. He still has great counts, below normal but great for him. His WBC today was 1.5, PCV was 27 and his platelets were 144.
See you tomorrow for another Day in the Life of Devin
Saturday, April 19, 2003
We have created a monster...
and his name is Devin. I don't know what got into him today but he was being bizarre all day long. He was wanting to destroy things and making totally unreasonable requests.
Greg spent the day with Devin and reported that he was just being...weird. When I would call to speak to him, he sounded like he was not feeling well but Greg said he would be chipper and bouncy until he picked up the phone. Maybe Devin is suffering a split personality? ::::grin::::::
He wanted a tuna sanwich, chips and onion dip. Greg brought them down to Devin, who promptly ate them. He is looking forward to deviled eggs tomorrow.
His night nurse, Toni, is planning to hide some eggs in his room this evening while he is sleeping so he can hunt for them in the morning. The entire gang of us are making the trek down tomorrow to spend the day. The kids got to see him briefly yesterday but he needs to spend time with them. We can see a big difference in him when he can play with his brothers and sisters. I think it helps him stay connected with everyone.
His counts have gone down a little bit since yesterday. His WBC was 2.2...which is up, very unsual. I wonder if either today or yesterdays count was off. His PCV is at 27, down 2 from yesterday and his Plateles went down to 168 from 220. This is not expected and we will see them get a whole heck of a lot lower. He normally gets a blood transfusion when his PCV drops below 25 and he gets platelets when that goes below 20.
Have a happy Easter tomorrow!
Friday, April 18, 2003
Here Comes Peter Cottontail...
hopping down the hall of Vanderbilt today. There was a giant bunny that was roaming the halls today, passing out baskets to the kids. I had brought down some hard boiled egss, some stuff to color them and Devin and I were coloring eggs when the giant rabbit appeared at his door. Of course, Mr Bunny can't come into the room so Ginny, the Child Life lady, brought the basket in for Devin to dig through.
Devin had yet another fantastic day. Miss Rebecca, his teacher, spent about an hour with him. Devin and I went through his Phonics book and got quite a bit done as well. The only hitch was, as always, food.
The chemo does change his tastebuds so something that looks, smells and used to be yummy to him are not any more. He asked for cheese sauce to dip his Dorito chips into. He got it but decided it was too spicy. It tasted like plain ole cheese sauce to me. After I heated it in the microwave, he did like it and ate the whole bag of Doritos. This morning, the only way he would eat his scrambled eggs was if his nurse *fed* it to him!! Devin is milking this for all it is worth....
We got counts on him today. WBC: 1.7 down but still considerably higher than I was expecting PCV: 29 and his Platelets are still staggeringly high at 220.
Despite getting chemo again, his hair is actually thickening in! I think it is a momentary thing and by next week, he will be as bald as a cue ball.
Thursday, April 17, 2003
The Tidy Bowl Man
has arrived in Devin's room. Today he started his blue chemo drug , Mitoxantrone, today. One of his nurses, Miss Yolanda, calls it the Tidy Bowl medicine in honor of the color. Not only is the medication blue and in a blue bag, it turns urine blue as well. He will get it every 12 hours for the next 4 days. He was pleased to report that his urine is now a blue-green color. Only a seven year old would delight in telling people this LOL
Today Greg and Ryan spent the day with Devin. Greg reported that the boys played and had a grand time. Devin ate well today and is not complaining of anything. The rash on his cheek and shoulder came back today but since he was switched from the medication suspected as being the cause, we have no idea what it is from. It is not itchy or bothering him so we just watch it and leave it alone. Greg did have Devin do his homework so he is set for his teacher tomorrow.
Devin has been begging for Ryan to spend the night with him so it is Boys Night down at Vandy. Greg and Ryan are spending the night down there. In the room, there is an extra bed and a chair that folds out into a bed. I know the boys will sleep but for the adult, it is not quite as restful. Not only do you have the nurses, who are incredibly quiet, coming in to check things, you have his IV pump beeping when it is close to running out, you have the PICU right there with family members who stand in the hall and are loud at times AND you have the Life Flight landing pad right above the room. The helicopter can be very loud.
Some ladies on the internet who have babies the same age as Iain (May 01 Moms) sent a big box of stuff for all the kids. The May 01 Moms asked what they could send to Devin and I suggested that since Devin gets a load of stuff from all kinds of people, that something for the siblings would be appreciated. These ladies went the extra mile and each child got a bag full of stuff..including Kierynn! Devin also got a bag of goodies. What a great group of ladies.
Basically, it was an uneventful day...which is great!
Wednesday, April 16, 2003
Ping, ping, pinging....
Devin was pinging today, he was in a great mood. This morning, he asked for some bacon. Three hours later, no bacon had arrived so one of his favorite nurses lit a fire under someone. Within a few moments, we had a nutritionist in the room letting me know that an order for bacon would be put in so that Devin gets it every morning. Shortly after she left, we had a plate with 8 pieces of hot bacon delivered. Mr Bacon Boy was in heaven eating that bacon.
Miss Rebecca, his teacher at the hospital, came by today and they spent time doing reading and math work. He has some homework to do before she comes back on Friday. Later in the afternoon Devin and I worked in his phonics book. He is doing much better with his schooling there although he tends to act silly until I say something to get him to settle down.
We did notice a rash on his face and his shoulders. One of the oncology doctors happened to come in when I found it had spread to his shoulders so we ran down his (short) list of medications. Only one of them, an anti nausea one, is new so she took him off it and put him back on zophran. No counts were drawn today so I have no clue what his blood is doing at the moment as far as white blood cell, platelets etc.
His room is insane as far as the temperature goes. We alternately freeze and then burn. Today, it was set on freeze. What is ironic about it is that we never adjust the thermostat, it remains untouched. As soon as you get enough blankets to feel comfortable, we begin the burn cycle where it becomes unreasonably warm. The room is also very dry so we put lotion on Devin to keep his skin from drying out. He is getting eye drops right now with his Ara-C chemo.
If you look over there to the left side of the screen ( <-----), you will see a mood incidator. I will try to set it so it reflects Devin's mood of the day.
See you tomorrow!
Tuesday, April 15, 2003
A whole lotta ....
not much went on today. Devin got his second and third dose of Ara-C (his first chemo drug) today. He gets it every 12 hours for 8 doses. So far, he has not had any adverse reactions but he didn't really have any last round either. I think it helps that he went into this session healthy and last time, he went in dehydrated and with an ear infection.
Greg and Nicholas spent the day with Devin. He really enjoys having one of his siblings come down there, he would prefer all of them but it gets crowded in the room and fights break out. Greg said that Devin and Nicholas took to hiding in Devin's storage tub until Greg put a stop to it.
On a positive note, Devin ate today. He said he would eat if I sent food or brought food up so I took down orders last night. Today, Greg brought up a sack lunch like for school and dinner on a microwavable plate. Devin tried to pull his "I'll eat it later" trick until I spoke to him. I would really love to see him not have to get an NG tube back in.
No counts were drawn today on his blood since he just started chemo and no new medications were added. It was a good day today :)
Monday, April 14, 2003
Blogspot.com hates me!
I just spent 15 minutes typing an update and when I tried to publish it, Blogspot ate it!! So, here it is again...hopefully I can recall all I had said.
After sitting in the clinic for 5 hous today, we finally were able to go over to the hospital for a room. We are in a larger room this time, it is the same room Devin stayed in following his transplant in 2001. He was thrilled to see that a Nintendo 64 game had been added to the room, I was thrilled to see that the VCR is set next to his bed so he can change tapes. In the room we had been in last month, the VCR was next to the TV, which is mounted on a wall and is hard for me to reach. Devin would have to rely on an adult to rewind a tape, put one in etc. Now, this one is next to him within easy reach, very nice!
Shortly after we were in the room, I brought up his giant tub of things to make the room more home like for Devin. He has his blankets, his Beanies, his Pokemon cards...all the things a boy needs to feel comfortable. He was not as happy to see the toothbrushing chart go back up. Mouth sores are common following chemo so we are militant about teethbrushing. He brushes 4 times a day and so far, he has never developed mouth sore and we aim to keep it that way.
Devin did start his chemo today, he began the Ara-C which he will get for 4 days. He had an echocardiogram of his heart done today as well to check his heart before the blue tidy bowl chemo starts on the 17th.
His counts today were white blood cells (WBC) 4.4, red blood cells (PCV) 29 and platelets (Plts) were a whopping 268!!! Devin also gained 2 lbs in the 10 days that he was home..go Devin!
I know I had more that I had written but it is late here and I have a baby wanting my undivided attention. We will see you tomorrow for another Day in the Life of Devin
Sunday, April 13, 2003
Three miles...
that is the length of the long trail at Dunbar Cave State Park. We took the kids there today since it was a beautiful day. They had a grand time running around Swan Lake (no swans, plenty of geese and ducks) and counting the turtles sunning on logs. The most turtles on and around one log was 38. They also saw fish, squirrels, deer and a lone chipmunk. We went up near the cave but the only time it is open is when a tour is about to go through. Devin and the rest went walking on the nature trail and Devin did the entire 3 miles, in addition to all the dashing about before the trail and after. Iain even walked a good portion of the trail.
Devin likes walking on the trail but we can't shake him of the notion that the trail caused his leukemia. Why, you ask, would he even think this? In the late summer of 2000, Devin fell while walking on the trail and got a nasty cut on his forehead. He still has a scar up near his hairline from that fall. When he was diagnosed with leukemia in February 2001, he has always said that the cut is what caused it. We have explained over and over, as has his nurses, that the fall had nothing to do with it but that logic is just totally lost on Devin.
Since it was his final night home for awhile, we took Devin out to dinner. He picked Ruby Tuesday. There is nothing wrong with this boy's appetite at the moment! He ate a bowl of broccoli cheese soup, a grilled cheese sandwich and french fries. This is one of the few times lately that he has been a member of the clean plate club.
Devin's hospital tub is packed with all his goodies, his animals, his blankets, calender and all the other essentials needed. A strange thing will happen though, once we get there. When it is time to go, the tub that has plenty of room in it at the moment will be crammed full and we will be required to make several trips with extra bags.
We will see you tomorrow, with an update from Vandy.
Another gorgeous...
day was had. All the kiddos spent the day outside, playing in the yard and acting like goons. Devin got tired after awhile but since he spent a month trapped inside a small room, that is hardly surprising.
Some people have emailed me to let me know that the Leave a Comment feature doesn't work. When you click on it, it will open a new window to leave a message. If you have pop ups disabled on your computer, the feature will not work.
The hospital room that Devin stays in at Vandy is a special myleosuppression room. It is larger than the regular rooms, has a second bed and all the myleo rooms have special filters. The downside to these rooms are that there is zippo as far as natural light. We do have a window overlooking an outside playground (and how ironic, the only kids who CAN'T go play on the playground have a room that looks out to it) but because it is in the center of a building and down several floors, we get no actual sunlight in the room. It is very much like a cave....or prison cell.
There are loads of child life people who come by to do crafts, play games etc but those wall close in very quickly and the room gets smaller every day. Vandy is opening a new Children's Hospital in the late fall, there is going to be an entire wing for the myleo kids, the whole wing to have the filters so that if able to, those kids can actually leave their room! Right now, when we go in on Monday, Devin won't leave that room again until we leave unless he has some procedure that can't be done in his room.
We decorate the room, bring in videos and do what we can to make it more homelike but as Dorothy said, there is no place like home!
More later today!
Friday, April 11, 2003
Devin ran around...
the mall today while we went in to Baby Gap to use a gift certificate. He was in a great mood and hiding among the clothes racks with Iain. It did catch up to him later this morning and he took a break on the couch.
After our snow the other day, the weather was just beautiful today. It was 70°, sunny and gorgeous. All the kids played in the backyard for a good long while. It will do Devin good since he is looking very pale right now.
I took a picture of Devin today, what a cutie!
See ya tomorrow!
Some hints for those...
who read this page. If you come back here and don't see a new update for the previous day, hit Reload on your computer. That should show you the most recent page.
At the bottom of each entry, you can comment or leave a message by clicking on the words Leave a Message Here This will open a new window and you can leave a message. Although there is a space for your email, you can leave comments without filling that information in.
If I post a picture link or any link for that matter and it doesn't work, please let me know so I can fix it. Later today I will put up an updated picture of Devin.
Have a great day!
Thursday, April 10, 2003
Snow.....
We actually got *snow* last night. We are not talking a flake here and there but an honest to goodness snowfall. It was a fluffy, wet snow and I think we ended up with about 3" that was totally gone by 9 am.
Shortly after we discovered the world outside was white, I heard one of the kids upstairs head into the bathroom. I went up on the stairs to tell whoever it was to look outside. I turned the corner of the stairs and let out a shocked shriek of the boys name. (I am not naming him here but I can say it was not Devin) Rather than standing by the commode to attend to business, this young man was standing at the trash can!! In his defense, he is a deep sleeper and has been known to sleep walk. He was startled and obliged me by moving over to the commode to finish the deed. This morning, he had no recollection of it at all. Having kids is so much fun sometimes...
I got to go grocery shopping today...childless!! Now, that may not seem like exciting news to you but I can't tell you the last time I got to go and not have at least one with me. It sure made the trip faster and stress free.
I wish I had more interesting tidbits to post but that was the uneventful Day in the Life of Devin.
Wednesday, April 09, 2003
When in doubt....
bribe! Before Devin was hospitalized, he and Kaity spent an afternoon creating an unbelievable mess in his room. Stuffed animals, parts of toys, coloring books all over the floor. I don't think it was possible to see the carpet...really. Devin was under the mistaken impression that this would be magically picked up before he got home. Wrong. He has been dragging feet about cleaning it up, attempting to rationalize why he should not, that others should help and finally attempting the old "I don't feel good enough to clean it" ploy. Bwahahaha....didn't work.
We bribed him today to clean up his room. Greg went up with him and a trash bag and directed the effort. We got a 33 gallon bag of broken toys and junk out of there, I pulled out about 2 dozen shirts that are too small to send to a friend in Texas, we can see the carpet again and Devin is proud of his efforts. I can hear a load of kids up there, hopefully they are so awed by the clean room that they are not messing with anything. The bribe also had a second part, he has to be diligent in his teeth brushing (a clean mouth helps prevent chemo mouth sores). Even though Devin knew this, he is still attempting to get his reward NOW instead of Monday.
We got a call at seven this morning, seven! It was Vandy Admissions Office needing some information to process his admission for Monday. She was having a hard time since she had the wrong insurance listed and the wrong social security number. Hmm...perhaps she could have looked at all the other times he has been admitted, it has not change. Was it really necessary to call at SEVEN AM? It was actually 6:58 am but I am being kind.
Devin didn't give any grief about doing his school work today. We still have some stuff to do after dinner as well.
Basically, there was not much going on today here at A Day in the Life of Devin.
Tuesday, April 08, 2003
The *Great* News and the Not So Great....
news for the day. We heard back from Devin's doctor and his bone marrow is clear! There was no signs of any blasts at all, 0%!! We are officially in remission now (even though I suspected it a few weeks ago when Devin's blood was clear). The not so great news is that he is being readmitted on Monday for another round of chemo prior to his transplant. Since he is going in leukemia-free, this round should not hit him as hard as his original round did. Here we go with the blue pee again. (For those scratching their head over that comment, one of the chemo drugs ...dubbed the Tidy Bowl Med by a nurse....turns urine a sorta blue color.)
After not eating yesterday, Devin has made up for lost time today and eaten everything he can. I know his appetite will taper off again but hopefully we can avoid an NG feeding or even better, avoid TPN feedings. We did get his beloved pills today, he was a happy camper.
Devin was also less than pleased to discover that even though he is not in the hospital or at school, he was still expected to do school work. We broke out his reading and math book today and worked some in it. It is amazing how he can be pinging off the walls feeling great but crack open a school book and he suddenly needs to rest for the rest of the day. ::::eye roll::::: We can't have an ignorant boy running around. I guess my degree will get a work out although home schooling is not what I had in mind.
That is it for the day, check back tomorrow at the same Devin channel for A Day in the Life of Devin.
Monday, April 07, 2003
We now have pills....
rather than the hideous liquid. Well...almost. Devin's doctor said it was not a problem to switch him to the pill form even though it is a lower dosage since the meds are prevention only. Tomorrow we will be making a trip to pick up his pills. He downed his other pills with a smile today when we told him that no more liquid.
Devin went down to the clinic today for a blood draw and a bone marrow aspiration. His counts are still going up. His white blood cell count was up to 3.0, his red blood cell was up to 28 and his platelets were up to a whopping 176. Now, granted, these are all low or on the low side of normal but considering he is coming out of chemo, those are *fantastic*. He saw one of our least favorite doctors today who asked him if a cat scratched his face. Hello?? He had an NG tube in, he has a friction mark from it. It doesn't look anything like a cat scratch. I think it was a Hello kind of a day down there anyway. Greg had one of the social workers approach him and tell him we should be thinking about using Devin's wish with Make A Wish foundation. Huh? Why the big rush NOW?? Why in the world would we want to do something now when he woul not be able to do much? We would much rather wait until he is feeling better. Ugh, social workers.
Devin has not eaten today, mostly from the medications used to sedate him for the bone marrow draw. By the way, we will find out the results of that draw later in the week.
I guess that is about it for the day. Have a great evening and check back tomorrow for another exciting installment of Day in the Life of Devin.
Sunday, April 06, 2003
Devin has staged a mini revolt....
today. He is kicking up a fuss over taking his Diflucan (antifungal medication) in liquid form. His other two meds (Acycolovir and Bactrim) are pill form and he wants the Diflucan in pill form. Well honey, we are trying but since your doctor is not in on the weekend nor is the pharmacy where we get the medication from open, there is not a lot we can do. He only takes it once a day but he is protesting for all he is worth over having to choke down 2 teaspoons of an orange flavored medication. ::::eye rolling::::: Tomorrow, Greg will see if we can get it changed to pill form even though the dosage will be a little less than the prescription calls for. What a switch from 2 years ago when he threw a fit over getting anything in pill form, he wanted all liquid. Now he downs pills like a pro, he doesn't even use water.
For all that Devin is doing incredibly well, he was feeling rather maligned this weekend. Not only did mean ole mom make him swallow his medicine, he also didn't get to take place in the annual Queen City Road Race. Every year, there is a race that the kids can take part in. They sign up through school and get a shirt. Nicholas, Ryan and Kaity all signed up and had their shirts. Devin was in the hospital when sign ups came around and even though we could have signed him up today, we can't have him around that many people or out in the freezing rain we had today.
Yesterday he didn't get to go to a unit egg hunt. The other kids who live in our house brought home a bunch of eggs and candy for him. Devin got his own little hunt out in the backyard. It stinks to be 7 years old and not able to do normal kid stuff sometimes. It really stinks when you feel perfectly fine :( Here is a picture of Devin taken during his chemo treatment, you can see how ill he was feeling. Cool Dude
Hope you all have a good evening and we will see you tomorrow with another day in the life of Devin.
Saturday, April 05, 2003
We created this site to keep everyone updated on our Devin Dude and his treatment for leukemia.
After 28 days inpatient, he was released from Vanderbilt's Children Hospital yesterday. This was *much* sooner than anticipated since we had been told that the chemo he got for this bout was much stronger than the chemo he got before his bone marrow transplant in 2001. His blood counts , we were told, would remain low and not start to return to normal for 30-35 days. Heh, Mr Devin once again made a liar of everyone by having his counts begin their climb 14 days after his chemo ended.
Even though Devin was not eating well (hospital food, who can blame him?), his NG tube was removed before coming home. He though it was incredibly cool that Molly, his nurse, let him pull it out. Ewwwww!
So we are at home for the weekend, he has been eating and doing well. We do have to return to the clinic on Monday for a bone marrow draw. Based on the results of that, we will then discuss our next step.
Will it be another round of chemo or straight to another bone marrow transplant?
Have a great day everyone!
