Sunday, May 18, 2003

 

Cruising Along

I have not updated in a few days because there is not a lot to say. Devin went back to the Clinic on Friday and his NG tube was removed. His weight was up a bit, which is good! He was a little dry so we are now giving him fluids overnight via his central line. It hooks up like his vancomycin, through one of the lines in his chest tube. It runs while he sleeps. He still needs to drink plenty during the day as well.

The oncologist we normally see in the clinic was out today and Devin saw a different doctor who had a few students with him. He commented to Greg that based on what he read in Devin's chart, he came in expecting to see a much sicker boy rather than the one bouncing around the exam room. Make no mistake, Devin does look ill (pale, thin, dark circles, incredibly thin hair) but he is full of energy. Greg didn't get what his PCV was but his WBC was 2.5 and platelets were 67.

Devin was a bit pouty when he was told that there was no way he would be ableto go to camp this year. He went to Camp Horizon last year, an oncology camp. He has been talking about going all year but it starts 2 weeks after his transplant, just not gonna happen. The others will be attending Sibling Camp the week following Oncology Camp. The Oncology Camp is great because all the campers have been through similar experiences. They had a medication bell several times a day where everything shuts down so the campers can take their meds. Since everyone there at the camp has been through this, no one thinks twice about the bald head, the chest tubes, NG tubes or the medications. The Sibling Camp is so nice for the siblings, who often feel left out when the sick sibling is showered with gifts.

posted by Devin's Mom 7:49 PM

Thursday, May 15, 2003

 

Nurse Mom

Today was a very slow day, which is good! The home health nurse, Stacy, came over this morning to make sure that I was comfortable in changing the IV and setting up the next dose. I checked out ok to do it for the next few days.

Devin is under orders to drink, drink, drink and fell short today. He did drink close to 50 ounces of various beverages but that was just over half of what he was asked to drink. I don't know that I would be able to drink as much as he is supposed to. He did eat today.

During a coughing fit, we had his NG tube come out. Devin threw a holy fit when I said it had to be put back in. He screamed, he hollered, he hid his face. He really wanted us to take him down to Vandy and have the nurses do it there since they will give him something to relax. Color me a mean mom, we were not going to drive 60 miles down and 60 miles back for something that takes less than 2 minutes to do. We talked to Devin and on the count of three, I put the NG tube all the way back in. Devin seemed surprised it went well and said it didn't hurt at all.

Tomorrow, he has an appointment down in the clinic to check his counts and make sure things are still on course.

posted by Devin's Mom 10:58 PM

Wednesday, May 14, 2003

 

Home Sweet Home

Devin got released to come home today! Woo hoo! Of course, we have to make several trips a week down to the clinic to moniter his progress, draw blood and make sure things are going well.

We met with the transplant team today to go over the plan of action and to be presented with a few options. In a nutshell, Devin will be getting 4 days of full body radiation followed by 3 days of chemo, a day of rest and then the transplant. Between now and then, he will be getting a slew of tests to make sure that other than having cancer, he is healthy. Ryan, as the donor, will be getting some tests and taking iron for a short period of time prior to him donating his bone marrow as well as a few weeks following the bone marrow harvest. We also agreed that we would take part in a clinical trial with Ryan. In addition to taking iron, he will get the GCSF shot to stimulate cell growth in his blood. GCSF shots have been given to adult donating to adults and in children donors but nothing in a controlled study. This will be a controlled study. Devin will also be taking part in a study of the effects on bone density following radiation. Basically, all it involves on Ryan's part is the willingness to let us give him 5 shots and on Devin's part, 1 x-ray of his arm more than he would normally get. Assuming that all goes well, we are tentatively thinking the actual transplant will be taking place on June 9th. Depending on many factors, it could be pushed back to June 16th. Devin would be readmitted on June 2 if we stay on the current time frame.

Devin did come home with his NG tube in and is being hooked up at night with Pediasure. If he continues to eat and stay hydrated (he is under orders to drink 2.5 liters of fluids daily), then it will be removed. He is also still getting one of his antibiotics, vancamycin. We have a pump here at the house and I just hook up the meds in his central line and then flush the line. Since I have to flush the line (to keep it in working order) daily anyway, doing the antibitotics is not that big of a deal. A home health nurse will come over tomorrow to watch me once to be sure I know what I am doing. He also got some platelets before he was released.

His counts today were WBC 2.5!!!!! We expect that to drop a bit since he is not getting the GCSF shot any more. His PCV was 26 and his platelets were 19. He is currently laying on the couch watching TV, just wallowing in the fact that he is home with us :)

posted by Devin's Mom 9:43 PM

Tuesday, May 13, 2003

 

The Sun!

Devin got to see the sun in person today. His feeds have been cut back to only at night so his doctors have been encouraging him to eat and drink. Dr Whitlock said he drank 4 oz of something...water, soda, juice..anything, before lunch, he could go out into the courtyard for a picnic. Devin downed 4 oz of lemonade in record time. He was so excited to get out into the courtyard. As we dashed through the halls, the other nurses cheered for him and clapped. Once outside, he just ran around a little bit and looked soo pleased to be outside. His nurse brought out his soft taco and another lemonade. After finishing most of his taco, he played on a swing and talked to one of his other doctors, Dr Viviana. Since he is sensitive to the sun right now from one of his meds, we had to stay mainly in the shade but he still managed to chase one of his nurses and try to keep a ball away from her. We only were out 45 minutes but I think it did him a world of good.

Later in the afternoon, one of his nurse helped him make prank phone calls out to the front desk and to the desk right outside his door. Of course, the ladies answering the phone knew it was Devin and played along. I just sat back and shook my head while this was going on.

It looks like tomorrow Devin will be released to come home. His ampho was stopped today but he is still getting his vancamycin. He will get that at home as well, more than likely a nurse will come to do it twice a day or they will show me how to do it. I am betting on the nurse although I would do it but since it is IV...I think a nurse. I am not sure if he will remain on the levoquin or not. I know he will continue on his bactrim, acyclovir and diflucan at home. The NG tube is still up in the air. I think it will stay in until he starts eating better and he will get get Pediasure overnight.

We are having a meeting with the transplant team tomorrow as well and hopefully will get a timetable down. Devin's counts today were WBC up to 0.8, PCV was 25 and his platelets were at 19. I have given up on his neutraphils but I know they are up as well.

posted by Devin's Mom 9:54 PM

Monday, May 12, 2003

 

Yaaawwwnnnn!

Devin is feeling much better. He is feeling well enough to be bored today. He slept rather late this morning and never really seemed to get moving. He drug his feet getting up, drug his feet getting his teeth done, drug his feet over just about everything he was asked to do.

Dr Frangoul, the transplant doctor, scheduled a meeting for us to discuss the transplant on Wednesday. He is wanting to move quickly on this so that there is not a lot of time between Devin's counts being low and fully recovering. As bizarre as it may sound, the transplant should take place while Devin is not totally recovered. This gives the leukemia less of a chance of being able to establish itself again. We will find out more on Wednesday.

Both Dr Frangoul and the oncologist who is on rounds this week, Dr Whitlock, think that Devin will be able to come home later in the week! Woo hoo! We don't know for how long but at least over the weekend. I know he is ready to come home and we are more than ready for him to be here with us. The NG tube question is still up in the air, it depends on how he eats. He nibbled on some tacos today but didn't really eat anything much. He managed to eat some sherbert later in the day.

His counts today took another wobble forward. His WBC was 0.5, his PCV stayed steady at 25 and his platelets were 26. His neutraphils, rather than mess with the everchanging number, are smack dab in the middle of the normal range. Hopefully we will see a more dramatic rise in all the numbers soon.

posted by Devin's Mom 10:43 PM

Sunday, May 11, 2003

 

Happy Mother's Day!

Devin had a great day today. Everyone came down to Nashville to visit him. It always perks him up and gets him moving to have his siblings in the room. Iain, of course, is a wild man in there but he is almost two..what can you expect? For awhile, Devin and Kaity made bead necklaces. Devin made me a bead necklace that says "Mom" or, as I discovered, I can wear it wrong and it says "Wow". He had some help in making me some handprints of his and a nice little card.

Although he was feeling great, he didn't feel much like eating. That really is ok since he is currently getting almost 2000 calories a day through his NG tube, he really is not hungry.

His counts took a small step backwards today but are still up overall. His WBC 0.3, PCV was 25 while Platelets were 44. We are getting conflicting numbers on his neutraphils since some nurses tell us his Absolute Neutraphil Count (ANC), some give the percentage and some a shortened version. As of today, his ANC was 11

posted by Devin's Mom 10:17 PM

Saturday, May 10, 2003

 

Creeping on up

Devin's counts took a leap today...upwards. His WBC doubled to 0.4, his PCV went up to 27 but he was transfused yesterday and his platelets were low enough yesterday, I figured he would get some today. Instead, his platelets went up to 59! I am not sure of his exact neutraphil number but it also went up significantly. If this trend continues, he may be able to come home for a short period of time before his transplant...which is still not scheduled.

Greg took Nicholas and Ryan down to visit Devin today. This is always good because it gets Devin up and out of bed. He is a lot more active when his brothers are with him. Greg also brought some soft tacos with him and Devin ate part of one. His NG feeds are still running at 70 so any actual food he wants to eat is a bonus.

Not much was really going on today, just kinda going along like normal.

posted by Devin's Mom 9:49 PM

Friday, May 09, 2003

 

Yo Quiero Taco Bell!

Devin once again ate! He really, really wanted a burrito so I went to Taco Bell for him. Devin told me that his burrito last night had meat, cheese and sour cream...not exactly like the burrito I am familar with. After a few phone calls, I got hold of Kristen who told me she had actually gotten Devin a soft taco with sour cream. Goood....we just wanted to be sure we were getting him what he wanted. I made the trip out and brought back soft tacos. Devin ate one on the spot and the remaining one was put in the fridge for later. His night nurse, Miss Toni, brought him chocolate chip pancakes too. His NG feeds are up to 70 cc an hour so it is incredible that he feels like eating real food.

Physical Therapy came in today to get Devin out of bed and moving. Now normally Devin is a happy little guy that is cooperative but today he balked. He shrieked, he cried, he struggled. The therapist was stunned because he never acts like that. With all of his struggling and bouncing around to keep away from her, he actually ended up doing a lot more than she was going to have him do. What a little goof ball!

He was having a 24 hr check on his kidney function today. Every day, a vancamycin level is drawn and his came back abnormally high. The urine collection is to keep tabs on his kidneys. The redraw was normal and his kidneys are working just peachy. I think it was a lab error. The doctors also have isolated the bacteria found in his blood culture as a staph but it has not shown up again. They are keeping an eye on it to be sure it does not pop up again.

This afternoon, we put up various maps on his walls so he can chart his postcards. We have a map of the US, of Europe and of the World. He likes looking at the various state and countries. We read the postcards and then found where they came from on the maps. Thank you Mary, for sending the maps and having such a great idea!

His counts again were almost the same today. Devin's WBC is 0.2, his PCV was at 20 so he was transfused with blood and his platelets were 18. I expect him to get platelets tomorrow since I would bet it drops below 10. His neutraphils were up to 9 today. His counts are acting like they want to come up and just need a wee nudge in the correct direction.

Overall, Devin had a very good day!


Thursday, May 08, 2003

Monkey Man!

Devin definately is feeling better. He was a wild man today and wanted to be a monkey on Greg's arm. He was zipping around his room, kicking balloons and in general, acting like a 7 year old boy stuck in a room with not a lot to do.

We did find out that one of his blood cultures came back positive for bacteria. This could mean he has a bacterial infection, that there was a mistake in the lab, that his culture got contaminated or that the bacteria is in his line. The cultures are being redrawn to double check and also to see what specific bacteria it may be. In the meantime, he will continue on his current medications until we know more. He is already taking what he would be given anyway.

Devin did not much feel like eating today although he reluctantly ate half a popsickle again. Later in the evening he ate almost an entire burrito! If he can continue to eat and keep things, they will back of his NG feeds and let him eat. His feeds went up to 60 cc an hour and I think tomorrow, they plan to up it again to see what he can tolerate.

Devin's counts for the day were: WBC 0.2...we would like to see this go up but we are happy it is staying steady. PCV was 21 and his platelets were 29. His neutraphils went up to 50 (or 5 if you prefer...depends on who you ask).

The Devin Postcard Project is starting to see results. Devin has gotten postcards from Louisana, Arkansas and Florida. Mary sent him maps that we are putting up in his room and she has gotten some cards for him as well. Thanks for sending them!

posted by Devin's Mom 10:42 AM

Wednesday, May 07, 2003

 

Zzzzzzz!

Once again, we had a very uneventful day with Devin. He did his work with his teacher, we did some phonics and then he was out for several hours following getting one of his medications, the ampho.

Yesterday he had been taken off his vancamycin but then began to run a fever....low grade. Since the fever came when the vanc was stopped, they began it back again today and drew a bunch of cultures to see if anything is going on.

Devin was pretty sulky for most of the day, he is not happy at all about having the NG tube in. We did manage to coax him into eating half of a popsickle but nothing else. Hopefully within a few days, he will start to eat again. In the meantime, he is getting Pediasure at the rate of 50cc an hour. That equals out to 5+ cans a day.

His counts today were WBC 0.2, PCV 21 and his platelets were 42. His neutraphils were up to 24. Usually when his neutraphils begin to recover, everything else begins to follow.


Tuesday, May 06, 2003

Nooooo!

Despite everyone, us, the nurses and doctors, pleading with him, Devin did not eat anything. Even though he knew what the outcome was going to be, he threw a fit when his nurse held up Pediasure in one hand, the NG tube in the other. Devin needed three people to hold him still while it was put in. The NG tube goes through the nose, down the throat and into the stomach. It is not a painful thing, it just feels weird. Once it is in place, Devin doesn't notice it anymore. He stayed mad at his dad for several hours after it was put in though.

He is still getting Pediasure, just directly into his stomach rather than him drinking it. It starts out at 10 cc an hour and eventually it will be up to 60 cc an hour. It depends on how he tolerates it. The doctors think Devin is reacting to the taste of the Pediasure and will be able to do fine with it by passing his tastebuds.

We put up a picture of the big hail that we got on Monday. This picture was taken after the hail had melted some, we didn't think to grab some sooner.

All in all, it was a very uneventful day outside of the NG tube. His WBC was 0.2, PCV was 21 and his platelets were 63. His monocytes, something we don't normally look at, is showing a rise so his doctors think he is starting his climb back up. I certainly hope so, it would be nice to have him eating again so we can get rid of the NG tube.

posted by Devin's Mom 5:09 PM

Monday, May 05, 2003

 

Look Toto!

What a night! We had severe weather and tornado spawning storms come through overnight. Nashville was spared the brunt of it but up in Clarksville, it looks like there was a tornado that touched down. This afternoon and early evening we had more bad storms come through.

Devin got blood and platelets today and as a result, has much more color in his face than he did yesterday. He is more engergized as well. His teacher came in and they spent and hour doing various things.

Shortly after his teacher left, severe weather came through. It must have been very close to Vanderbilt since the hospital called a code orange and all of us were moved into the hallways. I say all but really, Devin stayed in his room. Kierynn and I were in the hall, sitting right outside his door. I think we spent about 30-40 minutes until we got the clear signal to go back into the rooms.

That was the most exciting thing that happened today. Devin did drink a Pediasure, ate a few chicken nuggets and attempted to drink some milk shake type things...with no success. The doctors were discussing an NG tube being placed in and Devin is very aware of this. He has asked for a slew of foods to be brought to him tomorrow. It is frustrating all around because we want Devin to eat, Devin would like to eat but his tastebuds are off and nothing is tasting right. We will see how it goes tomorrow.

His counts today were WBC 0.1, PCV 19 and platelets were 12. His PCV and platelets will be up tomorrow since he did get transfused today.

posted by Devin's Mom 10:11 PM

Sunday, May 04, 2003

 

Slooowwwww

Devin spent the vast majority of the day asleep. He was not running a fever but was feeling sickly. He got some anti nausea medication that put him to sleep. Just as he was waking up, it was time to premedicate him for his ampho and back to sleep.

We brought Kaity and Iain down to visit, the boys were going to come down later. Since Devin was sleeping, the boys did not come up and when Devin finally woke up, around 7 pm, he was a bit miffed that they had not come up.

Since he was sleeping so much and feeling icky, he didn't really eat much of anything today at all. Hopefully he will make up for that tomorrow.

His counts for the day were WBC 0.2, PCV 21 and platelets were 21. His neutrophils were at 1.9%...which is up from where they were at absolute zero. Neutrophils are the front soldiers, if you will, of cellular defense against infection. When Devin's neutrophils and WBC are down low like they are currently, he is considered to be neutropenic. This leaves him open to infections and bacterias so even his diet is changed where he can not get fresh fruit or vegetables, yougurts, dried nuts or processed meats. I am sure there are other things he can't have but those are the ones I can think of off the top of my head.

In looking back at our records, Devin's counts began to recover within 5 days of being on ampho last time around, hopefully it will hold true for this round.

posted by Devin's Mom 9:14 PM

Saturday, May 03, 2003

 

Traffic

It was a traffic mess today trying to get into downtown Nashville so we had to find an alternate route. Not a lot of fun when the two major highways leading in are down to 1 and 2 lanes (as opposed to the normal 4).

A friend of mine, Mary, is organizing a project for Devin. She is having everyone she knows send a postcard to here from their state. Those postcards, along with a map for Devin to chart the postcards on, will then be sent on to Devin. If you would like to send a postcard from your state, you can either send it here, to us or to Mary. If you need either address, please email us at proctorg@charter.net

Devin was pleased to see Greg bring Nicholas down with him to spend the day. The boys played and had fun with only occasional spats.

Because he is still running fevers overnight, nothing major...about 100.5°, so he was sent down to nuclear medicine for a CT scan. This is checking to make sure there is no fungal infection going on. He is on anti fungal medicine anyway, he will be on it for several months, but it still has to be checked. The doctor down there said that it didn't look like anything was abnormal but we have to wait on the official report. After Devin came back up to his room, he got an chest x-ray due to his cough. His last chest x-ray was clear but everyone wants to be very cautious so he is being checked again.

Devin's counts for the day were WBC 0.2, PCV 22 and his platelets were at 33. I am taking the fact that his platelets didn't do a sharp nosedive as a postive sign.

Friday, May 2, 2003

I was late in posting for yesterday but here it is!

Devin ran yet another fever overnight, 102.3°, so he was placed on another, stronger antibiotic called amphotericyn (and as always, I have no clue if that is spelled correctly). This is the big guns of antibiotics and is only used when other stuff doesn't seem to be working. In the past, Devin has been on the ampho for less than a week before his counts begin their upward climb.

He didn't do well with his eating, he drank 2 cans of Pediasure. In spite of asking me to bring in, he barely touched potato wedges, chicken fingers and Sunny Delight. He did eat about 5 potato wedges but only under protest. He is complaining of mouth pain but there is nothing in his mouth when it is looked at.

It was a very quiet day since he gets premedicated with both Benadryl and Tylenol prior to the ampho. He slept most of the afternoon while I sat in a chair and read a book.

His counts for the day were: WBC 0.1, PCV 24 and his platelets were 46.

posted by Devin's Mom 6:26 PM