Feeling A Little More Awake Today...

Donavynn is doing great! I can't even begin to express how happy this makes me. Every day here is a struggle in some way or another, whether it is that he isn't feeling well, or my brain is going places that I wish it wouldn't with worry. I can't imagine my life without him. He fills every single day with joy, even when he is acting like a typical 4 year old. Which by the way is incredibly hard because he never got an attitude before, and is now begining to test the waters a little more, but even so, I'd rather have that than what we were dealing with throughout October. He lightens my world and the love that he has for his sister and she for him makes it even better. Of course they fight, like brothers and sisters do. And she doesn't listen like she should, like most 10 year old girls. But I have two amazing, loving children and my life would be so empty without them. With Thanksgiving over I have found myself searching to see what I am really grateful for, and I would have to say that the #1 thing is my family. All of it, from my mom and dad to my husband and children.

You would never know that he is neutropenic because currently he and his sister are racing around the house. And earlier he was racing on his smart cycle and going so fast! His energy amazes me because I have so little right now. I have been drained emotionally and that takes its toll everywhere. I wish I could bottle some of his energy. It makes me so happy to see him like this because it shows just how strong he really is. I admire his strength. I have seen such strength in these kids, both on here and in the hospital. You know that much of the time they don't feel good or are in pain and yet they storm the halls of the hospital with the bikes and tractors they ride, they fill the playroom doing crafts or playing games and they laugh! Through the pain and the sadness that is cancer they laugh. I think that often times we the parents are the ones that struggle with this the most, even though we aren't the ones feeling the pain, we have a harder time with all of it. Often times we have a hard time being normal because our brains are going over all the possibilities and the kids are for the most part oblivious. Donavynn told me the other day when I told him that he had to wash his hands or he would get sick "I am sick already!" He doesn't understand that that is a different kind of sick. Much like his friend at school the other day didn't understand. For this I am also grateful. His laughter washes away the fears, at least for a little while. It brightens my day and gives me hope. Know that though I haven't had time to talk to many of you, I haven't forgotten about you or your thoughtful words and prayers. I appreciate everything you all do from sending up prayers to checking up on us. Your support means the world to us.

Didn't Make Counts

So sorry for the lack of updates, but I am still experiencing some computer issues, and it has been pretty crazy here. Donavynn just got his last Erwinia shot for awhile on Monday, so we were up in the city just about every other day since we got out of the hospital. Donavynn has been doing really good. He has been as active as ever and even went to visit his friends in school this week. His friend Jacob was very sad that he couldn't stay. But hopefully they will be able to have a play date soon when his counts are good again and we aren't in the hospital. He was supposed to start his HD Methotrexate yesterday but we got all the way up there and he didn't make counts. The good thing is that we get an extra week at home. I'm trying to see the upside. The only bad thing is that it delays everything and now if there aren't anymore in the next few weeks he'll have to spend Christmas in the hospital instead of Thanksgiving. But we'll see what happens. Either way, I know that he'll have fun. We did our Thanksgiving on Monday, since we thought we were going to be at Mercy today, so today we just had some lasagna. But at least we were all together. Donavynn's grandparents from NY have been in town this week. And it was the first holiday that both my and Dave's family were together. It was really nice.

I even got a little break last weekend. My dad babysat so that my mom, Rachael and I could go see Twilight. Boy, was that well worth the wait! I loved getting out of the house for awhile and not having to worry and we all loved the movie, after going crazy over the books. I'm telling you, it is an obsession! lol

So it seems that at least for now, things have settled down here for awhile. We are praying that it stays that way, but are thankful for everyday that it is. I'm just about done with school for the semester so that will help with the stress level for a little while as well. Then it is just one more year! It seems like it is so far away, but I know that it will just zip on by. Just as this year has. I can't believe that Donavynn is almost 5, and that Cheyenne is almost 11. We have had a rough year, but are so thankful for all the positives that were mixed in with the bumps. So please continue to pray that all goes well. And that he'll make counts next week, as well as that he won't develop any mouth sores from the Methotrexate. Many children do get them, and they are a concern because the mouth is full of bacteria. I am sorry if this is disorganized. It has been a long week and I'm really tired. I will try to update again when I have some free time.

What A Difference Being Home Makes!

Today has just been great. Donavynn danced for the first time in probably two months, was singing, playing the Wii and he even jumped. He ate a little today too, a package of poptarts and a yogurt. It isn't much but it is something. And he even chose the yogurt over fries, so I was pretty impressed with that. He isn't really looking forward to going back up tomorrow and honestly neither am I. But then we'll have the weekend off, as long as all goes well. He has only had one accident today which is pretty impressive, I wasn't sure how he would do. And his bottom is continuing to heal very well. One day at a time, we are just so happy to see him being his normal, happy self. That is about all there is going on right now. Great day with the family, still pretty drained. But boy did we all sleep well last night. To be home, all of us together, sleeping in our own beds! I'll try to update again tomorrow after we get home from clinic. Have a great night.

We're Home

This is going to be short and sweet. We are home. And everyone is doing well. The house has been complete chaos since we got home, which is why I am posting so late. He is beyond happy to be home as am I. I had a dream last night about sleeping in my own bed! lol Which is where I'll be headed soon. I have been up since 4:30 and have to be up with him every three hours for his eye drops. So that is really all for tonight. We are home and happy. Please pray that he stays healthy and continues to do well.

Heading to Bed

Today was a good day, all went well with the HD Ara-C. He even got to go down to play Bingo, he won a matchbox car and a Toss-A-Cross Game. That made his night, and he is now looking forward to future stays that don't involve fevers, that are only for treatment. Thursday nights are Pet Pals and that is his favorite, so perhaps in the future he'll get to go to that. He spent most of the day resting. The chemo takes a lot out of him. And he was on IV fluids most of the day so he didn't get to ride his bike. I took his bike down to the car and then they tell me that he doesn't need the fluids anymore! lol I can't win. Well I'm heading to bed, we have a long day tomorrow. We come back up Friday for his next Erwinia shot. Keep praying that all continues to go well. I'll try to update tomorrow evening sometime if I'm still awake enough to type coherently. lol Have a great night!

AM Update

Things are looking good! His blasts are gone again, which is awesome. And he started his HD Ara-C yesterday afternoon at 3, and so far he hasn't gotten one of those dreaded Ara-C fevers. Lets hope it stays that way. They also premedicate with Zofran, and wouldn't you know after they did that he ate! He ate 2 pop tarts and most of a grilled cheese sandwhich! Perhaps he is feeling nauseas a lot and that is why he doesn't want to eat. He is still sleeping right now, but not for much longer, they have to come in and put in his eye drops soon. And he seems to be getting better with those.

Last night we went down to do a little project in the teen room. They had cupcakes, pretzel sticks and a fruit roll up and he made a tepee out of it. I have pictures that I'll upload when I have time. He also enjoyed coloring with a couple other kids on the big wipe off board they have down there. He was so happy to leave the floor!

His bottom is healing very well, it shouldn't be much longer now before it is all healed. He got his last dose of IV antibiotics yesterday. And it still looks great.

His ANC is 2,230 today, which is up from the 1800 it was yesterday. So that is good. Hopefully it will stay up for a little bit longer and let his bottom finish healing. I spoke to the docs more yesterday about the G-CSF and when to start it and we aren't starting it Thursday, we are going to wait until his counts drop. Because the only reason we had this much of an issue this time was because he had C-diff going into everything, and all that lead to the breakdown of his bottom leaving it open for that infection to get in. So hopefully we won't have as many issues this time, we can only hope. I'm sure daddy has been cleaning up at home, doing the weekly top to bottom disinfection. And hopefully that will help. Hopefully now that he has been feeling better he won't be so lethargic either, which will also help. The more active he is the better.

So the plan is still to go home tomorrow and I think we are both equally excited! The staff here is great and all but we are ready to get out of here. Donavynn told Dave the other day that he can't wait to go out those doors and tell all the nurses "I'm OUTTA here!" lol I can't even tell you how great it is to have my spunky little man back. He has been amazing everyone on the floor with his bike riding skills. He even found a little friend to race yesterday! They had a great time, until Donavynn had to get hooked up to his chemo. They are having Bingo in the teen room tonight, and if he is still fever free and feeling up to it we might go down. I think he would like that. The only bad thing is that he has to leave his mask on when he leaves the floor, because you never know if someone is going to sneeze! Hopefully he'll be feeling good.

Those are it for updates right now. Things are looking good all the way around. Please keep praying that he stays healthy and we are able to stay home more this time around. And please also pray that he handles the Erwinia well, with no reactions. Starting those again, every other day always has that risk. And he really needs to have all the chemo's on the protocol so lets keep praying that his body handles it all well.

Thanks for the love, support and prayers!

Pictures From the Last Few Days, and Today's Update

Playing with Daddy

Making his about me collage

His gingerbread house he made yesterday, complete with
"autumn leaves" on the ground

Making his gingerbread house

(below is from Saturday)

Let's Race!

Today's CBC showed 2% blasts, but the doctors weren't concerned. They said that the machine probably missed them yesterday. They said it is more likely that that happened than that they were gone and rose up again. But they said they'll continue to watch them.

Donavynn has been doing really well. He's been out playing and riding his bike for a couple hours everyday since Saturday. And he hasn't been on IV fluids since then either. He is back on them now because they want to get him good and hydrated before they begin his Ara-C this afternoon. He has been so happy and feeling so good that I am sad that he has to start that up again today. I'm just hoping that maybe he won't get the fevers that the Ara-C is so famous for. He has some peeling on his hands and legs now, which they say is another common side effect of the Ara-C. Fun times!

They removed his last remaining stitch today. So hopefully that will continue to get better, and will be 100% healed very soon. He's sad to be stuck in his room right now. The only thing he wants to do is race and he can't do that with the pole, and besides the playroom is closed until 2:30 because they are having school for the older kids. Overall it has been a good couple of days, I only wish we could have been able to enjoy the at home. We are all so happy to have our happy go lucky Donavynn back!

On another note, my friend Rachael, who helped with the August benefit is in the process of organizing another one, because as I mentioned this protocol calls for many trips to the hospital and many stays for treatment, not to mention the unplanned stays due to fever. She is doing a "Breakfast with Santa" 2 weekends before Christmas. I'm sure it will be great fun. I wish that we could attend but I'm not counting on it. He starts the next phase of intense treatment at the end of this month or beginning of next month, depending on counts. But I am so thankful to have such a wonderful, thoughtful friend. Because God knows we don't have the time to do anything like that right now. I'll keep everyone updated on the benefit so if any of our local friends wish to attend with their children they can.

Well I'm going to sign off for now, I'm sure there is some homework that I could be doing. Please keep praying that he continues to do well, that the chemo doesn't make him feel too bad, or damage any part of his little body, and that he can stay healthy this time around so that we can enjoy some more time at home as a family.

Today's Labs

I don't have a whole lot to say today, yesterday was a great day and I'm sure today will be as well. We are going to enjoy being out of the room today because the Ara-C can cause fevers and he starts that tomorrow. And as you know fevers = staying in the room. I am simply posting this morning because I got his labs and THE BLASTS ARE GONE!!! So that made my day! I had to look a couple times because they only list them if they are there, not like other counts where they will write for example % Mono - 0 or something. Anyway, that was the highlight of my day so far. He is getting his antibiotics now so I'm going to jump in the shower, when they are done we are going to enjoy the day out playing and riding his bike. I'll update later when there is more to tell.

Our Donavynn is Really Back!!!

You better hurry up! Nana's gonna get you!

Here she comes!

Today daddy went home, he has to get back to work. And hopefully we'll be joining him on Wednesday. My mom brought Donavynn's bike with her when she came to get Dave and that got Donavynn out of the room and even more active than he has been! He road his bike up and down the halls for probably 2 hours! I'll post some more pics later but here are the ones I got from my phone. He is doing great and if it wasn't for chemo on Monday we'd probably be out of here by now. We are just hoping that he stays this way after this next round of chemo. I'm going to talk to the doctor again about when to start the G-CSF, because his counts won't tank for about 5 days or so, so maybe we'll wait a little longer, because I don't want him on it any longer than he has to be. Please keep praying that he continues to do better!

The Current Plan

Dr. Shore visited again today and I was able to talk to him about the G-CSF schedule. He said he is fine with starting it sooner, he said that they don't usually give that with a chemotherapy drug but if it might help than we can give it a shot. I'm just not sure how it will work as far as with counts... do we start it and then stop when they are ok, then start again when the Ara-C drops them? I'll have to look into that further I think.

They are very pleased with his progress. He has been off of IV fluids most of the day and has been drinking really good. He's picked at food here and there but nothing really worth talking too much about. However his bottom seems to be doing very well. So the plan as of right now is to shoot for a Wednesday discharge. They will likely start his next round of HD Ara-C on Monday provided he makes counts and if he does than we'll be going home on Wednesday. But we'll see, none of that is set in stone.

Donavynn's friend Kaeden is in the hospital now too, with a blood infection. :( Maybe you could say some prayers for them too.

That is about all for tonight, it has been a good day and he keeps improving. Thanks for all the prayers.

Congratulations Elisa!

Hannah

Wow, this morning turned out to be better than I thought. I just got a call from one of my best friends back in NY. She had her baby girl this morning. 7lbs 5oz 20 inches long born at 8:30 EST. She looks just like her mommy! I miss you girl, wish I could have been there! Congratulations to you both! Please keep sending me lots and lots of pictures! And call when you feel up to talking.

A Much Better Morning!!!

So the last few days it has been like pulling teeth to get a copy of his labs. Which is nerve racking, because I know that if they don't bring them right in, if they hem and haw about it than there is a problem. The problem has always been that there are still blasts. I have tried to explain to them that I am aware of this, and all it does by beating around the bush is make me more nervous. Apparently they finally got it because when I woke up this morning a copy of his labs were sitting on my laptop! And guess what! They dropped again, and this time by almost 400 instead of the 100 they have been dropping. So I feel much better! Now they are at 6%. People must have been praying along with me last night, thank you!

Nancy his APN (advanced practice nurse or nurse practitioner) stopped up last night because I needed someone to calm my nerves. I spoke to her about how another patient on the same protocol is getting the G-CSF after the first dose of Erwinia instead of the last and how that seems to have helped him spend less time in the hospital, so I asked her to talk to Dr. Shore and see what he thinks. If they have their reasons as to why it is after the last dose than ok, I just didn't feel that it could hurt to ask. She also took a peek at his bottom and she said that it looks pretty good. It looks like there is some granulation tissue there which means it is healing good.

The doctor was just in and she explained that they want him on at least 10 days of IV antibiotics (we are on day 8) and then they will see how his bottom is looking and decide if he needs another 4 days. That is our time line at this moment for going home. It is still pretty vague but better than before. I'll update more later. I just wanted to share the good morning that we've had with all of you!

We Hit The One Week Marker

Today has been pretty good overall. Still worried about his blood work. The blast count is dropping, and they said that they still aren't worried. But it isn't dropping as fast as I would like it to. They said if he still has blasts next week then they will do a bone marrow biopsy. So please pray that that isn't necessary. Every morning when I ask for the labs I get sick to my stomach. I'm so worried.

He got up and out of the room again today. Peddled the tractor around the halls, made an "about me" collage, and played catch with me in the halls. He is napping now. I wish we could get one of the bikes like he has at home. That would be easier for him to peddle. Maybe I'll have to scrub one of those up and keep it just as his hospital bike. Seen as how we will be spending more time here it seems.

He just had his bipap therapy, which puts him to sleep every time. So he is taking a nice nap now, and then we'll probably go back to the play room and have some more fun!
So please keep the prayers coming, we still have no estimated time of discharge. I'll update again a little later if I have time.

***The information below is for family, I do NOT believe in soliciting help from strangers over the internet***

Hello everyone, I am wondering if any of you have any fund raising ideas. The money from the fund raiser we held in August is almost gone with the long hospital stays and the multiple trips up here. We need to organize something that isn't going to take a lot of time, as we don't obviously have that. But things aren't going to get better for awhile, so we are definitely going to need some help, as hard as that is for us to admit or ask. So if anyone has any ideas please let me know. And if any of our family is interested in making a donation you can click the donate button above, it will put a deposit directly into our paypal account. Thank you so much!!!

Another Pic From Last Night

He LOVES this racetrack!

Today's Update

Walking with daddy

Washing my watermelon! lol

He just kept smiling at me forever when I got back! lol

As you can see by the pictures, he has been fever free for more than 24 hours so he was able to leave his room! We got him up and let him play in the play room then took him for a walk up the halls. But I think we may have over done it a bit because all that walking got him coughing, which is good, it gets all that stuff moving. But they think he may have pulled a muscle in his chest because it hurts him to cough. His chest x-ray has shown great improvement though, so we'll just keep getting him moving. Right now he is doing some great lung expansion - laughing, hysterically to Kangaroo Jack! I forgot that the kangaroo gets hit, and when he saw that he started balling! So I had to explain to him that he was ok, and once he saw that he was he started laughing and hasn't stopped much since! lol

His bottom looks better, redness wise. But 2 of his stitches came out. So they don't want to put new ones in, they just want us to continue to irrigate it and keep the ointment on it. Hopefully now that his counts are back up it will heal quicker.

He's on O2 per venturi mask now when he sleeps, because his sats were dropping into the 80's again. They feel it is likely just from him being immobile. So hopefully the more we get him moving the better that will get.

They aren't starting chemo tomorrow as planned. They want him to get over this infection and let his bottom heal. And we don't know yet, when we'll be going home. That will depend on his bottom. He's only had 2 stools so far today, so that is surely helping. And I'm so proud of daddy! He did so well taking care of him. He was concerned about cleaning his bottom. He wasn't sure if he could do it right, and didn't want to hurt him. So I wasn't sure if he would do it or have the aide's do it. But he did all his care while I was gone, and he did a great job! His bottom looks even better than it did yesterday. So he is really proud of himself too! I think this has been a good learning experience for him. Usually I do all of Donavynn's care, just because I'm usually the one there, and it is easier for me to take time off of school usually, that it is for him to take time of off work. So this is all pretty new to him. Daddy = fun, usually. But this was really good for both of us. He learned some, and had some good quality time with Donavynn, and I learned to give up a little control (lol) and take a break. As hard as it was for me, it was nice to sleep in my own bed last night, and have time to get the house clean so that it is ready when we do get to go home. But (I never thought I'd say this) I'm glad to be back in the hospital! lol I missed him so much!!!

Oh yeah, labs! His white count was up to 10,002, ANC - 4,710, Platelets - 162 and the blasts were down to 8%! Yeah! So we'll keep watching them and hope that they continue to go down. So today has been a good day, please keep praying that he continues to get better and that his wound on his bottom heals quickly!!! Gotta go spend some time with my boy, I'll update again when I have more to tell.

Made For Donavynn by a MySpace Friend!

Sorry about the lack of updates, update

Hi everyone, sorry I haven't posted yet today. I left this morning for school and prior to that I was freaking out about leaving and had a little moment when I freaked out about his blood work. His blast count was up to 11%, scary! So the doctor came in and spoke to me and said that all of his other counts are good. His total white count is over 8000 and his ANC is 3500, so it more than tripled over night. They still think it is related to the G-CSF, which they are now stopping because his ANC is high enough. And they expect them to start going back down tomorrow. They said some people just recover really fast, which he did. Many kids are on it for more than a week before they go up. And when they recover that fast, that is likely to happen. She said they had one kid who did the same thing last week, his blast count was 25% and once he went off the G-CSF it was fine.

He also has a little puss drainage from his wound on his bottom, they will keep an eye on that and think it is likely just because he has a white count now, which you need to make puss.

He did get a fever again last night, but it was a different kind of fever. With the med he would chill hard before and then it would take hours to come down, it even got up to 105. Last night he didn't chill at all, said he felt hot and it was high so they gave him Tylenol and it went down really fast.

He is having a good day with daddy. His appetite has picked up and is doing well. I'll update more later if I get a chance, I have paperwork to do for school. I just wanted to let everyone know that he is doing good.

Evening Update

We had another chest X-ray done tonight to see if there has been any improvement from the breathing treatments, and there has been. They look better than last night, and they are starting to move his secretions so he is coughing them up now. His O2 sats are staying in the high 90's as well, at least they have been all day when he's been awake. The night may bring another story, time will tell. The wound biopsy came back showing the same as the culture, no fungal! YEAH! Only the staph, which they said according to the sensitivity is not resistant! Which is also good. He was up in the chair for 5 hours today! I couldn't get him to walk around the room, but the fact that he was out of bed was an improvement. If he remains fever free (lets keep praying!) then he'll be able to leave his room tomorrow afternoon. He is hoping for that. Tomorrow night, if all continues to go well, will be the first night that he will spend in the hospital with out me. Daddy will be here of course, but that isn't the same, so I'm a nervous wreck! And so sad. But if he is doing well, then there is no reason for me to miss clinical. The semester is almost over, gotta keep plugging along. But even though I know that, my heart is broken to have to leave him here and not be here if he needs me. Our wonderful nurse that we had last night and have again tonight is going to think of many reassuring reasons why I should go, and why everything will be ok for one night without me here. lol He is watching Finding Nemo now. And he's been chatty all night. He also has not hesitated to inform us of what he likes and doesn't like. And if we are doing something wrong. This is what I like to see, my happy but opinionated little boy!

They also did a KUB (abdominal X-ray - stands for kidneys, ureters and bladder) and that is normal. They did that because the resident was pushing on his abdomen earlier and he was saying he was in pain. He ended up vomiting shortly after which was probably the cause for the discomfort, but they wanted to be sure. They are still trying to make sure that they aren't missing anything.

I'm not sure if I mentioned it in an earlier post or not, but the infectious disease doc came in and took a look at his bottom, which is looking much better, and he now has a small tear beside the stitches that we need to keep an eye on. But hopefully that won't become anything major. The rest of his bottom is much better, not so red and not really raw at all. He is my brave little trooper and I am so proud of him!!!

I think that is about it for tonight. I'll probably post another blog in the am before I leave. Please continue to pray for him and say a prayer for me that I can have the strength to do what I have to do, and be away for a night. And that he does well without me here. Please also pray that we did indeed find the cause of the fever and he doesn't spike tonight. He is really looking forward to being able to leave his room, which can only happen when he's been fever free for 24 hours. Sorry if I'm rambling or repeating myself, I'm exhausted. Hope everyone has a great night!

Today's Photo's

He siad "Take a picture of me bald!" lol

He's out of bed, smiling and wearing his hat!

They gave him a costume on Halloween that he didn't get to wear, so he wanted to try on the
Spider-Man mask!

Sleeping with his O2

Bipap therapy

Labs for Today

The doctors haven't been in yet, but the nurse just stopped. She said they are starting him on a 5 day cycle of Zythromax for possible pneumonia, and they are going to take him down for another chest X-ray today to see if there has been any improvement since starting the bipap treatments. He just finished his antifungal and is chilling again, so I really wish they would take him off of that! I'm really starting to think that the nurse was right!

Anyway, he still has 4% blasts but Dr. Shore stopped in, he said that isn't concerning because his counts are recovering and he's on the neupogen. (GCSF) His total white count was 2,740! Up from 500 yesterday! And his ANC is 1069, up from 40 yesterday (don't remember if I put that in the other blog or not) so the med is working well, and fast. His platelets are 134 today, which is down a touch from yesterday but they fluctuate throughout the day so I'm not worried about that. Last time we were here he had a CBC done twice and once they were 77 and later they were 90 so that is no big deal. His hemoglobin is 11.2 which is low, but not bad. He won't be considered anemic even until it is below 10.
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Ok doctors just left. They are going to check the biopsy and remove the antifungal, even if he has a fungal infection then they will just switch to a different one. Because he now has a fever, and with the fever came the puking.

On the upside, he's off of contact precautions now because he went for so long with out pooing, and when he just went it wasn't liquid anymore.

We are waiting on the phenergan to help with the nausea, and hopefully she'll be in here with the Tylenol then too. These fevers are vile, they go so high so fast. So I hope we have found the cause and they will stop! I'll update again after we know more. The doctors didn't have much info at this point, other than that they think that is the cause of the fevers as well, and we are going to do another chest X-ray, they are also switching one of his antibiotics, just to be safe. But his blood cultures are still negative.

Updates for Last Night

I'm waiting for them to bring me a copy of his labs for today. But I wanted to post an update. He hasn't had a BM in around 13 hours or more! I can't tell you how happy that makes me!!! Last night he had an odd snore, was breathing kind of fast, and his O2 sats were in the 80's, so they put him on O2 via simple face mask, and hooked him to a monitor to watch his O2. They also took him for a chest x-ray at 11:30 or midnight last night. We are still waiting for the "official" report on that. Apparently they were still a little concerned because I woke up to them bringing the fun bipap in the room, they did one treatment with that so far. They said he can be off the O2 while he is awake and we'll watch and see what he does. Not sure what that is all about. He sounds a little congested (nasal congestion) and had a big mucousy cough while we were down in X-ray. After he coughed he sounded better for awhile. He's on Claritin for his allergies, but I know that doesn't cover everything. I guess time will tell. They said even if the chest X-ray shows something, treatment likely won't change because he is on antibiotics and antifungals and should be covered all the way around. Part of me wonders if some of this could be viral, because his monocytes were elevated yesterday, but that could just be because his counts are recovering so everything is a little off. As far as our theory goes, no news on what the doctors think yet. He did spike again last night while the med was running. But the nurse passed her theory along, chances are they aren't going to stop that med until his skin biopsy results come back anyway. So we'll continue to watch and see. I'm telling you it can be so frustrating. The advances that have been made in medicine and still so much time is spent playing the "wait and see" game. I'm really hating being on the patient side of medicine! lol The doctors will be in in a few hours I'm sure and I can post another update then, if not before when I get the labs, if there is anything to report there.

Possible Reason for the Fever?

I spoke with the nurse a little while ago and she had a theory. She happened to look at his records and his fevers usually occur a couple hours after he finishes the variconazole (the antifungal medication - given over 2 hours). She thinks that it is possible that the drug is causing the fevers. I looked it up in my handy drug book, that I'm so glad I brought with me this time, and fever is a possible side effect. It isn't a common side effect, but it is a possible one. So that is a current thought. I'll let you know if it happens again after the med. I'm telling you, we got a very observant nurse! She is one of my fav's, sadly she is a traveler! :( But having been so, she has seen a lot (she only does pediatric hem/onc) so she has a little more knowledge then some others may. So anyway, I'll keep you posted on this little theory. Heading to bed soon, so I probably won't post again tonight. I hope everyone likes the changes I've made to the page. Let me know if anyone has any trouble reading the fonts due to their color. Have a great night, and thanks so much for the prayers!

The Video's of the Haircut!!!

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This was after I cut it down so it would be easier to shave.



I'm having issues with google video now, so these 2 will have to do, I have a 3rd with the finished do but these are good. Hope you enjoy! It was hard for me, but I take comfort in knowing that he wanted to do this and is really happy with it. I took him in the bathroom when he was done, and the smile and look on his face was priceless!

Donavynn Has Made A Decision

Ok, not sure if he will change his mind or not but he recently informed us that he now has decided he wants to shave his head. If he doesn't change his mind I'll be posting pictures and possibly a video later. I'm torn, the hair is getting everywhere and driving us nuts, but last time he only lost some and we were able to enjoy him having hair for longer than most. I'm guessing it won't be like that this time because he is on such higher doses of chemo. But it still breaks my heart to watch it go. However, I won't let him know that because he is excited about it!

He also just ate some more chips, which is good.

Lab results are as follows:
WBC 500
ANC 40
Platelets 164

These are great, platelets came back up all on their own, WBC count is up 400 from yesterday and ANC is no longer 0. He did have 4% blasts, and for those of you who don't know what that means, blasts are bad. However, because he is on the GCSF they said that sometimes happens and that 4% isn't anything to worry about, but they will keep an eye on it. The GCSF has the marrow working in overtime so sometimes those cells sneak out.

So, I started this blog before my parents arrived and I'm finishing it now, after they left. And it's done, his hair is gone! :( My mom left the room, she said she couldn't stay for that, and it killed me to be the one cutting it! I did most of it, and my dad finished it off. I got some video footage, but I'm not sure if I can upload it because it may not be the right type of file, because my video camera wasn't charged so I had to use my regular camera. But I'm going to try. I saved all the hair, and will be sending some to Grandma and Grandpa in NY. I can't believe it is gone! But he is happy about it. He keeps saying "I'm bald!"

Before

After, with Grumpy and Derek
My 3 Baldo's!

With Sissy

As you can see by the above photos he was feeling better today, he sat up in the chair for quite awhile. He is resting in bed now, but still talkative and playing. He has his DS and is enjoying his new game. But while the other kids were here he played with some toys with them and had a great time.



Derek has really missed Donavynn, he even woke up crying for him last night! :(


So anyway, still no major updates, other than that he is feeling good, and his counts are on the rise, so hopefully the fevers will go away soon. Although even when he is febrile you would never know, he was still talking to us earlier and playing his DS, as happy as can be with a fever of 105! Which was quite frightening! Hopefully that was the last one, but time will tell. I'll post again if I get the videos uploaded and google will let me post them. I can't watch google videos here either so I don't know if it will work but I'm sure going to try.

Please keep sending up the prayers, they are doing so much good! I have my boy back for the first time in a month or more! And we couldn't be happier. Now if we can just get him healthy and get out of here that would be even better!

Solidarity!

Grumpy Going Bald!

The finished hair do!

Cousin Derek going bald!

Looking good gentleman! Donavynn was very happy to see these pictures and know he won't be the only one who is bald. He is feeling alot better today. Still getting fevers, which sucks! But he has been eating a little and drinking, talking, and playing. I even got him up into the shower today. He wasn't so thrilled after the shower when they had to take the plastic off that was protecting his port dressing. But it was good to get him in there and clean him off. He lost a lot of hair in there. He has so much that you can only see in patches. But even though it is getting everywhere he still won't let me shave it. In all of this I am trying to give him as much power as possible. He doesn't have a say in most stuff but he does in that. So we'll just deal with the mess as it falls out on its own.

He says "My hair is falling out, and I'll be bald like Grumpy, but my hair will grow back." He also said "My hair has to grow back red, Nana said so!" Thanks mom, you brainwashed my boy! lol

That is about all for now. No new updates, they are going to try to get that biopsy report because they still haven't heard anything on that. I'll update when I hear more.

Donavynn's Shadow Buddy

This is Donavynn and his shadow buddy. Look he even has his own mask! He also has a port, actually it looks more like a hickman but he is Donavynn's new treatment/hospital buddy. He named him "Two" lol This was his "I'm tired" smile. He is resting now, I just thought I would share his new buddy with everyone. If any of our fellow warrior families wants one you can contact Shadow Buddies
401 Clairborne Road Suite 103
Olathe, Kansas 66062
or by phone:
1-888-Buddie1

And they aren't just for cancer patients, they have ones for transplants, dialysis, burns and more. I thought this was so great because when I put his mask on him Donavynn said "He's got a mask just like me!" And it really seemed to make him happy to have a doll who looks like him, his hair is even falling out too!

An Uneventful Day

Today has been pretty quiet and mostly uneventful. He is still spiking temps, but he got his blood today and has some good color now. He has also been eating a little bit. He had a few bites of brownie, some potato chips and a crabby patty gummy candy. It isn't much but for him it is huge. He has been playing his DS all day. And still talking to us! I don't have any more results yet. We are still waiting on the biopsy, which I thought would have been done by now... but it is the weekend so who knows. I am going to ask the nurse to check again when she comes back. His stools seem to have slowed, he isn't oozing anymore and they aren't as watery, so hopefully that will continue to get better. He also hasn't had an upset stomach since yesterday morning I believe.
Dave let me get a break today! I got to leave the hospital for a little while, which was nice. I worried the entire time, but thankfully he has been doing much better so I felt a little bit better about leaving for awhile. And they did fine.

He is currently snacking on his potato chips now, maybe he'll even finish them off!

On another note, now that things seem to have settled a little I feel that I need to share news on our other special little one. She had her state testing done awhile ago, and we got the results to them. She is still behind in most everything, measuring between 2nd and 3rd grade, but on the listening test she scored 9th grade, 7th month! We are so proud. Her teacher thinks it is pretty likely that she simply got bored with the other tests, but we are still going to continue to work with her and help her out, because her grades have been steadily improving. We know she can do it, but we also know that she has a lot on her plate right now as well. She has been so brave and so strong as well, and we are so proud of her too!

I guess that is all for updates right now. I'll post again later if we get any news.

Good Morning

And so far it is. Donavynn had a few stools through the night, but not as many as he has been having. Most of it was just oozing small amounts. Unfortunately they are just as painful to clean, and just as important because we need to keep that area super clean. But he did great, and he had daddy up till around 2 am and they were playing his DS and talking! The talking has not stopped yet, even though the sedation has long worn off, so we are hoping this lasts. He seems to be feeling so much better, wanting to do things he hasn't in weeks. Part of me is wondering, and I'll have to ask the doctors if perhaps his port catheter location was causing some of his symptoms and making him feel worse... perhaps that was why he wasn't talking? Who knows. He'll be getting blood this morning, his hemoglobin was 7.9 I think, so hopefully that will make him feel even better. Also we learned that so far the only thing his wound culture has grown is normal skin flora. They could have caused the wound infection as well, but because they are normal for the skin we won't ever really know if they were invasive and causing the infection, if it was an infection at all. We'll probably just assume that that was it if nothing else grows. And he is covered antibiotic wise, so that is good. As far as I know his blood cultures are still negative, which has me a little boggled because his fevers have been pretty high. He has had this happen before just because of low counts, so who knows if that is it. So we are using Gentamycin cream (antibiotic) on his sutures as well as aquaphor as a barrier over it. We are also using ketoconazole for the yeast on the red areas. Hopefully that will help. They also just gave him so oxycodone to help with the pain, because his bottom is pretty sore. So hopefully that will help. Those are the updates for now, I'll post again after we see the doctors, or I get more information. Please keep sending up the prayers. Specific requests are in previous blogs. Thank you so much! And an additional prayer request: that Donavynn keeps talking!!!