Updates

Ok so they did the procedure and got the port working agian! YEAH! I felt better about them doing it once they explained that it wasn't going into an artery it was going into a vein, a big vein but that is still better than an artery because they gush, veins don't. While he was down there, when they finished that dermatology came in and punch biopsied, and cultured the wound on his bottom. The good thing was that with the punch biopsy, it took the entire sore and then they stitched it up. So hopefully that will help it heal faster. We have to be very diligent in cleaning and keeping the antibiotic ointment on them to prevent that area from getting infected. He did great throughout the whole thing, thankfully, I was freaking out a bit. And the cool thing was that the sedation made him loopy, so he is TALKING to us again! He said, slurring his speech like he was drunk "And I love you too, and I have a bandaid, daddy where did you get that sticker, mommy, where is your sticker?" lol Just like that, one after another! I was crying tears of joy to hear his voice, and hear him saying things that didn't involve the words "Ow" or "tired" or any of the other one word answers we were getting if we were lucky enough to get an answer at all. And for the moment he is still talking so, my guess is that the sedation hasn't worn off yet. We will hopefully have some answers tomorrow, but who knows because it is a Saturday.

We did get the C-diff test back, negative! They will probably have to do two more just to be certain but at least the first one was negative. He is still oozing stool though, so hopefully that will clear up soon, that will surely help his bottom heal.

Also the infectious disease doctors were in, and they as well as dermatology feel that it is more likely that this is pseudomonis, instead of aspergillus, but either is possible, or it could be something else entirely. Hopefully we'll know soon. Either way he is on meds that will cover him all the way around, antibiotics, and an antifungal. Ok I think that is everything. I'm going to go now and enjoy my boy while he is chatty. Please keep praying, with the way the day has turned around, my guess is heaven's doors were stormed with prayers this afternoon, thank you! Please keep sending them up! We aren't out of the woods yet.

Going Ahead with the Procedure

Ok, I guess they are going to do the procedure today at 2, it is similar to an angio. So I'm officially freaking out. Dr. Shore looked at his bottom and is concerned about aspergillus. I think they are going to start to treat for that just in case. He said if it is that, and it is just a skin infection than that is good. If it is deeper than that than we have a problem. We need prayers right now, please. I'll update again when I know more.

Dye Study Results

Above: Getting ready for dye study
Vascular access team

The vascular team came and was able to get an IV in, and get blood for labs, so that was good. We also just got back from interventional radiology and the doctor spoke to me down there. I love that, I was able to stay in the room and he explained everything to me as he did it. The first problem was that it wasn't accessed, the huber needle that they put in last night apparently wasn't long enough so they had to take that out and put in a new one. Then he showed me the catheter, it is supposed to be straight, but the end of his is curled, so it is in a bad spot. The problem with that is that in order to give chemo through it safely they need to be able to get blood return, that is the easiest way that they can be sure that it is in right. So they are going to have to fix it. The options are a whole new port, or they go in from underneath and try to straighten the catheter. That is what the radiologist wants to do. He is going to talk to Dr. Shore and we'll go from there. They may have time to do it this afternoon, but I don't know if Dr. Shore is going to want to do that or not because his counts are so low and he has been running a fever. At this point everything is really up in the air. He is resting now. I'll update again later.

Specific Prayer Requests:
Are the same as last night with a few additions...

1. Please pray that they are able to make the best decision about what to do about his port.
2. Please pray that if they decide to operate all goes smoothly with NO complications.
3. And please pray that they find out what is going on soon and fix it!!!
   

Morning Update

The night was better than some, but not great. He had a few accidents through the night, I really can't wait for the wound care team to get up here so we can get that taken care of! And with his fevers, comes the vomiting. The IV they started at our local hospital has gone bad so they are trying to get radiology on the line so we can get the dye study done, like now. Because with the vomiting and the diarrhea we need to keep the fluids coming, and with out an IV that is hard to do. He threw up the Tylenol he just had, so they are going to try to give him some sublingual Zofran seen as how the phenergan didn't work and then try the Tylenol again. I just hope we can get some answers soon, because I'm really not happy right now. They did get a stool from him last night when we got here and sent it down for C-diff among other things, and I don't know how long the other tests take but we should know about the C-diff sometime today. I guess that is all for now, please see the last post for specific prayer requests. I'm guessing that I'm up for the day now, the nurse just came in and said that they can't get him down for the dye study till 8:30 so they are having the vascular team come up to try to start another peripheral IV so he doesn't get dehydrated. I'm telling you, when it rains it freaking pours!

BTW for anyone who wants to call the room number is 816-460-1044 ext: 4408

If PCS sees this, please let Scott know what is going on, I don't have his number with me, so have him call me on the room phone.

I will update again later.

Quick Update - Back in the Hospital

This will be a quick update, and I'll give more tomorrow when we have more news. His port never started working today so we were supposed to come back up Monday, they left the TPA in hoping that would help. We got just about home and he started vomiting. I thought it was from the fact that the only thing he had all day was orange juice but as soon as we got home we noticed he had a fever - 103. So off to our local hospital we went. We just got up to Mercy about an hour or so ago. They still can't get his port to work so they are ordering a dye study for tomorrow. For now they are using the IV that the local hospital put in. He has been vomiting on and off all night, but seems to be ok for the moment. I also noticed at the hospital that he has a small pressure ulcer on his bottom, just a touch larger than a pencil point. I can't believe I didn't notice that sooner. But the doctor doesn't' think it has been there long, so the wound care team will be up tomorrow and we'll go from there. His diarrhea has also gotten worse, back to the watery consistency so they did another C-diff test to see if the Flagyl is actually working or not. With the diarrhea not letting up it is going to be so hard to heal that sore. I am starting to freak out. There is way to much going on right now, and I'm terrified. Thankfully Dave is off for the next 4 days, so he'll be joining us up here tomorrow. That will help me, at least then I'll be able to get away from the room every now and then. So I think that is all for now, I'll post again as soon as I know more and have time. If any of my MySpace friends are reading this please feel free to repost on MySpace since I can't. We need the prayers.

Specific Prayer Requests:

1. Please pray that the sore on his bottom heals quickly and doesn't get any worse or cause any other problems.
   
2. That the diarrhea will stop soon, and they will find the cause and solution in order to make that happen.
3. That his cultures are negative and that the only issue is the diarrhea and wound.
4. That he will start feeling better, and be back to himself soon.
5. That his counts will come up so that his body can help the antibiotics fight off whatever is going on, and prevent any further issues.
6. That his port will start working again, and he won't need a new one.
7. That the doctors receive the guidance they need to get to the root of this once and for all so he can start to heal.
8. That I can get the strength that I need right now, I'm feeling really beaten down.
9. That Cheyenne will not suffer too much from all that she is having to endure with us. She has the love and support she needs, but this battle isn't easy on any of us.
10. And that Dave has what he needs to help himself, and us get through this.
    

I think that is all for now. On another note, we noticed today as well, that his hair is starting to fall out. :( But he told me we can't shave it, that he just wants it to come out on its own.

Final Day of Erwinia for this Round

We are in clinic right now. I just got my lesson on his neupogen shots (G-CSF). We start those tomorrow so hopefully that will start working quickly and get his counts back up so he'll start feeling a little better. Just in time for him to get round two of HD-Ara-C and for them to drop again. His Erwinia has been sent up by the pharmacy but he can't get the shot yet because he hasn't peed and they need to check his urine before they can give the shot. His port is clotted this morning as well so we are waiting for them to get the TPA up here and unclot it so they can get his counts.

Donavynn has been the anti-Donavynn for awhile now, being difficult about things, things that are easy for him to be defiant with and don't require to much energy because the majority of his time is spent sleeping. But when an opportunity presents itself he will take it, for example when he had fries, usually he will eat them all, yesterday he ate a few and dumped the rest. So just little things. He still isn't talking much, when he does he repeats himself, or blurts out things that make no sense. Like the other day out of no where he blurted out "candy apple!" lol And right now he is having a shh war with me! lol I speak and he shushes me so I shush him lol. So there is still some of that playful Donavynn in there somewhere. I just wish we could see more of him.

Ok we finally got him to go, now we just need to get the shot, get his blood for counts and wait the required hour after the shot. He really wants to go home so lets hope all goes well again today. If all goes according to plan we won't have to come back in until next Thursday, so hopefully we'll get to have one week free from the hospital.

It is looking like we won't be going trick or treating this year, at least Donavynn won't. He is telling me now that he doesn't want to go. Of course we'll see what tomorrow brings, maybe he'll change his mind. But it isn't likely. So Daddy will stay home with him and I'll take Cheyenne. We scrapped the pumpkin carving for this year as well, because his counts are so low. Fresh fruits and veggies can carry bacteria and even though he wouldn't be eating it, I didn't want him touching it of even having that risk in the house. Hopefully Halloween will be better next year, because this has always been a day our family looked forward too. The kids just love it, and so do we, which makes it even more fun when the whole family can enjoy.

Ok well he just had his shot (10:17 am) so now we wait for the hour. But the TPA hasn't worked yet so it could be a little longer.

This whole thing is simply heart wrenching. Donavynn seems to be locked inside himself. And through all of this, that is probably the hardest part on us. Seeing him be so distant, so, not himself. I wish there was something that I could do to bring him out of his shell. He has regressed so much, and often times it feels like he is an infant again. It is very draining. But all we can do, is what we've been doing. Being patient and trying to get him to interact. Sometimes it works, sometimes he tells us to leave him alone. It all depends on the day. Hopefully when his counts go back up he'll start to feel better and he will return to himself. That is all we can do, is hope that this is temporary, related to the fact that his counts are low and his way of coping with his current circumstances. I can certainly understand it, there are times I wish I could do that, just ignore everyone, shut off the world and get lost in my own mind. So if the idea is appealing to me, I'm guessing it is just as much so to him.

That is about all for now. I'll update again when there is something to tell, and I have time.

Current prayer requests:

1. That he stays free of infection.
2. That his organs will stay healthy.
3. That this current state of mind he's in is temporary and he'll be back to himself in time.
4. That he'll start eating again soon.
5. And that he continues to respond to the chemo, stays in remission and doesn't have any adverse effects.

Thank you for your thoughts and prayers.

~Team Donavynn~

Finally Home

We are home, and Donavynn seems to be doing better just since we've been home. His stools have slowed down even more. And he's talking a little more as well. He also ate a little bit yesterday. I spoke to the NP yesterday about what I can do to help keep him healthy, such as vitamin C. She said she'd have to talk to pharmacy because there are some vitamins that will interact with the chemotherapy but she made some other recommendations that I should have thought of. Because she said his best bet is healthy eating, but half the time he won't even eat. So his new diet plan is Carnation Instant Breakfast. He'll get it at least in the morning and then if he hasn't had much to eat throughout the day, he'll get more at night. I also got a bottle of pediasure, just one, because I don't know if he'll like it. The hospital also gave us Resource juice, by Boost to have him try and if he likes it, then I can get him more. And then I am trying to get him to eat at least one yogurt a day to help him maintain his normal flora. So that is about it for now. We go back up to clinic tomorrow for his Erwinia, and his platelets were 40 yesterday so he may likely need platelets tomorrow as well. I will try to update again tomorrow after we get home, provided that all goes well with the Erwinia. I have to take his Epi-pen to every Erwinia visit, just in case. So please continue to pray that he continues to get better and that he doesn't have issues with any of the chemo's. And thanks for all the prayers thus far.

Going Home

Ok so we just got the news that provided all goes well with his dose of Erwinia today, we can go home!!! So pray that all goes well. Allergies with this drug are rare but they do happen. In fact I found a family yesterday that is going through the same protocol, they are a little further along than we are, and he reacted to the Erwinia just yesterday. I was so happy to find a family to talk to, who can give us a heads up of potential bumps in the road, support and we can help each other maintain a positive attitude. Because there are days when I don't have much of that. When fear takes over. But just talking to her yesterday helped me a lot. Anyway, Donavynn got a great nights sleep last night. No stools between 10:30 pm and 5:30 am! Which was a really nice break for the both of us. He was playing in his bed yesterday a little too, which was nice to see. And he even talked to Daddy and Nana on the phone yesterday. Ok the NP is here now giving me an update, will post again later.

Doctors Just Left

"See my blue Gatorade tongue!"

Ok since the last post I got him to drink an additional 6 oz of Gatorade so a total of 12 oz! YEAH! The doctors said that his x-ray showed that the atelectasis is resolved so he just needs to keep playing with the pinwheel but they are D/Cing the Bipap. They said "Let's see how the next 24 hours goes, you are heading toward getting out of here." That was hopeful news, I think going home might help Donavynn feel a little better too, but I have been getting some good laughs out of him this morning. But when I mentioned possibly going home soon he clammed up again. I think he really misses home. :(

From what I have found the virus could have also contributed to the fever, so perhaps that was the source of the fever he had that started last Tuesday. Who knows.

I guess that is all for now, overall great improvments and hopefully they will continue and perhaps we'll be lucky enough to go home tomorrow or Thursday at the latest. That would be nice, we miss our own beds! lol Keep sending up those prayers! Thank You!

Some news and more of the unknown...

So his stools picked up again yesterday to around 7 or 8, which had me a little boggled until this morning. The one nurse practitioner was just in and said that his virus panel came back and he has an enterovirus as well. So the stools are from the C-diff and the virus. Honestly, he can't get a freaking break! So that will just have to run it's course. She said she is going to talk to the team, but they are pretty sure they are going to D/C all the other antibiotics (except the Flagyl) because he has been fever free (48 hrs now!) and every blood culture has been negative. They are still going to have the wound care team come up this morning. Last night I called in the resident because his bottom is still really red, and it is spreading even though he has been laying on his sides, I told him I thought it was a yeast, which he has problems with when he gets diarrhea and it is, but they still want the wound care team to take a look to make sure they are doing all that they can to help him. She is also ordering some kind of "bath" for his bottom. It is supposed to soothe it, can't remember what she called it. He went down for his repeat chest x-ray this morning and provided that shows them the same thing the bipap machine has been then he will be done with the breathing treatments because he has had really good volumes. Now I just have to keep him using the pinwheel while he is bed. They are also taking him off of the monitors, which is good.

I am to push fluids and try to get him to eat, he ate 2 mini muffins this morning and hopefully he'll eat some more. He had a few sips of water, then I remembered that they used to have sippy cups up here and thought that maybe that might help him drink if he can have it in the bed with him. What do you know, they got him one and he has drank 6 oz of Gatorade in about 20 minutes, when over the entire day yesterday he only had about 2 oz, and that is probably being generous.

Now for the unknown, still no time line for discharge. They want to see a decrease in stools and they want him to be eating and drinking better. So we are pretty sure that by now the Flagyl is working and the extra diarrhea is from the virus. He should still have some from the C-diff but not this much by now. That is about all for now. I'll post again after the doctors round.

Erwinia dose 2 down... and today's updates

Ok today has been better with many improvements. His breathing is good. With the Bipap they like to see 10ml volume per kilogram (lung expansion) He weighs about 22 kilograms so he should have 220 ml with each inspiration yesterday he was getting about 170 or lower, today he is getting over 200 for most respirations and some are even over 300 ml, so that is really good. They also gave him a pinwheel to blow on. I wish I had thought of these things at home when I couldn't get him to do anything. The RT said blowing bubbles or a pinwheel works, so I'll have to remember that if he is ever bed ridden again, because he is still too little for the incentive spirometer.

He is still fever free thankfully. And he even ate almost a full bag of mini muffins today, he left about 1/2 when he said he was done, so that is an improvement. I was also able to get him to laugh, though he still doesn't have a whole lot to say. I made up a silly song to sing while I'm cleaning him to help distract him because his bottom is so sore, it made him laugh, but he wouldn't say it. Then the one time I was cleaning him he screamed "Stupid poop!" lol As soon as he knew I heard what he said he clammed up again. His bottom is so super red, and I was really concerned about turning and positioning him, but that wasn't helping, it was still beet red and he would scream anytime I cleaned him or applied any ointment, so I called in the doctor because it was looking a lot like yeast. And I was right, so they are ordering something for that as well, and the wound care team will be up in the morning to take a look at it. The nystatin just wasn't cutting it, and it usually doesn't for him, he usually has to have the ketoconazole, so that is what he is ordering and it should be up soon.

Dose 2 of Erwinia went well. Lets keep praying that the rest of them do as well. He is napping right now, he hasn't slept at all today so this too might be a good sign, he hasn't been quite as tired. I think that that is all for the updates for right now. Gonna go for now, will update again when there is more to tell.

Pictures

Not happy!
Sleeping last night
All of his machines
Breathing treatment
On steroids before admission.
At clinic before he got sick.
Playing the Wii at clinic
Donavynn and Angela
A good meal before starting his Ara-C




Daddy got him to laugh!!! Before he got sick.

Improvements and News

Ok so the night has been good, and brought about some good changes. His heart rate is normal now, he was a little tachycardic yesterday and the bipap seems to be helping as well because he is breathing a little slower than before. Yesterday he had really shallow respirations and was breathing about 70 breaths per minute. Today he is breathing a little deeper and between 30 and 50 bpm, depending on what is going on. His abdominal girth was 63 1/2 cm this morning, not sure how often they are going to check that, but that is our baseline right now. He still isn't saying much. Most of the time won't even answer anyone, every now and then we'll get a nod and Dr. Shore just left and he got a wave but that was about it. It has been officially 24 hours with out a fever!!! So the antibiotics are really kicking in and doing their job. I think that the medicine they are giving him for the gas is helping a little as well, he doesn't seem quite as miserable.

The doctors have decided to continue with the Erwinia, at least for now, if things get worse again then they can stop it later because he has 5 more doses to go in this round and they are spread out over days, and the Erwinia isn't as toxic as the PEG so he will be getting todays dose and we'll go from there. Which is good, I guess. They gave him the first dose on Saturday and it would be a total waste if they didn't keep going with it. But I'm glad that they have the option to stop giving further doses if there is an issue later as well.

His color is really good today, I just wish he would get out of his own head and start talking to us again. He is becoming the strong, silent type. I prefer the strong, talkative type. So those are the only updates for right now, I'll post again when there is more to tell. Please keep praying, they are working!

Atelectasis

Ok one of the nurses just filled me in on everything. The doctors filled me in on some stuff earlier but they didn't explain everything well enough. Apparently he has some atelectasis in his left lung. This as some of you may know, is a collapse of part of or all of the lung, this can be caused by pressure, which they told me was the cause of the problem, they just didn't tell me the name of the problem. With him it is only part of the lung, and it is a very small part. So we have been doing deep breathing exercises and tonight they ordered a breathing treatment via what I believe is a Bipap machine. It pushes air into his lungs, forcing him to expand his lungs and then to slow his breathing. He has been breathing very fast. RT said that they should see some improvements in a few treatments and he will be getting 10 minute treatments every 4-6 hours. They also want him lying on his right side to help the left side re-expand. I have been worried about this happening because he has been so distended from the steroids and I tried to get him to breath deep and move around which will help prevent it, but he just wasn't really having it, and he has been even less active while in the hospital because he hurts so much, and when he has the fever he feels even worse. I can only get him to do so much. Lately he has been looking at me like I'm stupid every time I talk to him, and not answering me. He just looks at me and closes his eyes when I speak to him! lol So anytime he speaks I get excited, and I know that when he starts talking more I will know he is truly feeling better.

Tonight he is looking much better. He has good color and has been fever free for about 15 1/2 hours now. Which is great! And he seems to be sleeping more comfortably now. Every night I have been waking up to him moaning, which is very hard to hear from your baby. They gave him some medicine to help with the gas earlier and he can have that every 6 hours. We don't know how much it will help because C-diff produces a lot of gas, but we are hoping that it might. Also they are going to start doing abdominal girth measurements to see how much he is distended and to be able to monitor better if he is improving.

Those are the only updates for right now. It's been a crazy day, lets hope tomorrow is much milder and will bring great improvements. Please keep praying that he heals quickly.

X-rays

They did some more x-rays to be sure that all is well. And it looks like a lot of gas, which is making it hard for him to breath. So they are calling respiratory therapy to come help out and make sure that he is getting everything he needs. He still looks pretty bad, though he is acting a touch better. He asked for chips a little while ago, but then decided he didn't want them. His stools have slowed down and it has been nearly 12 hours without a fever. He has been breathing pretty fast, but that isn't really knew, he was like that on the steroids as well. He has been playing with his notebook today, which is another improvement. It has been a pretty scary day for us. I am so greatful to have had such wonderful staff on today. Shanna is probably my favorite nurse! She has helped me maintain my sanity. We have also seen some smiles today and heard his little voice more today, so that is good. This morning just threw me for a loop.

So I started to write this awhile ago, and then respiratory therapy came in, and then he messed himself, and then I needed to eat dinner so things got a bit crazy but RT showed me some tricks to get him to deep breath because he won't use the incentive spirometer, he tries but it is a little too hard for him. They are going to get him a pinwheel to blow but for now we have him try to blow a tissue off of a bottle, and deep breath and cough. Because with as shallow as he is breathing he could end up with other issues so we are trying to avoid that.

That is about all for now. Please keep praying that he will have a speedy recovery, and no further problems.

A Crazy Morning

Ok things are calming down now. We had a bit of an emergency this morning. Donavynn was really dehydrated so they needed to act fast because he was heading into shock. But the doctors proved to be as great as we always thought they were and they got him back to where he needs to be. His ANC has gone down a little. It is around 3000 today and his hemoglobin dropped to 8.6 so they are giving him blood which will also help with the dehydration. They are also going to do an abdominal x-ray to make sure they aren't missing anything. His diarrhea slowed down last night. Only 4 times through the night and only over the course of an hour and 10 minutes. We are waiting on his current labs that they ordered Stat during the crisis. They have him on oxygen, and finally his capillary refill and color are coming back. He looks much better. They added 2 new antibiotics to make sure he is covered because the C-diff can actually lead to a blood infection if the intestines start to bleed. So they are giving him Gentamycin and Vancomycin now in addition to the Flagyl and Cephepime. So through the night he had 2 fevers, 4 hours apart. And then he had another one this morning, 7 hours after the last one. So hopefully they will spread out more and more and become non existant. As far as going home, that is pretty up in the air right now. We can't go until he is fever free anyway, and right now I don't mind being here because he is just not feeling well at all. I also don't know if they are going to D/C the Erwinia yet, my guess would be they will but I'll know more when the doctors round. That is all for now. I'll post again when I have the results from the x-ray and CBC.

C-diff results

Positive! Which means we could possibly be here for 1-2 weeks. It will depend on a few things and I'll know more after talking to a doctor. If not tonight then tomorrow morning and I will update again when I have more information. We believe that he is already responding to the antibiotics that they started this morning because his diarrhea has slowed way down, thankfully and he seems a little more awake. He asked for his notebook for the first time today since Thursday so that was a positive and he has had a few smiles. Hopefully he'll start feeling better really soon. Please pray that he heals quickly and that this doesn't cause any further problems.

Still Waiting...

Sorry it took me so long. I didn't get much sleep last night either so Donavynn and I took a nap today when we finally had a lull in the action. The doctors ordered his miracle butt cream (Aquaphor and Mallox mix) so hopefully that will help. They were able to get their stool sample as well, they are doing a C-diff culture and a viral panel. He spiked another temperature a few hours ago, so it is still unclear if it is from the Ara-C or something else like the possible C-diff infection. Hopefully we'll have some answers tomorrow. But at this rate, I don't know if we'll be going home tomorrow either.

He had his first dose of Erwinia this morning and thankfully that went well. They put emla on his leg before the injection but that didn't really seem to help a whole bunch. The medication burned when they put it in.

Thankfully the diarrhea has slowed down for now so he is getting some sleep. They switched his antibiotics again. They took him off the 2 he has been on and replaced them with cephepime (I think) and Flagyl. They are zoning in the the GI tract now. Lets hope they figure something out soon and his bottom can get a break so it can start to heal. He is so sore and raw. I got the results to his CBC earlier. His ANC is up it was 5600 on Thursday and it is 6770 today which makes me wonder if it is an infection even though nothing has grown yet... But his total white count is down, so who knows. It was 8000 now it is 6840. So the majority of his cells are neutrophils. And he has 24% bands and 75% segs. His RBC count is down to 3.37, hemoglobin is down to 9.9, hematocrit is 28.3 and his platelets are down to 102 from 223 on Thursday. We should have the results to the C-diff today, apparently they do them once a day and they haven't done them yet, so I'll let you know when I get those results. All I know is that I hope he starts feeling better soon. I miss my baby, my happy baby. And it breaks my heart to see him feeling so down and crummy! The nurses usually come in and talk to him and can get him laughing and smiling and now they are all shocked to see that he won't do that now, it just shows them how crappy he really is feeling. I should probably get off my butt and pick up this room a little. I have our stuff sprawled out everywhere but I am just too tired to care at this moment. And cabin fever doesn't even begin to describe what I am feeling. I have 3 large windows in our room that are looking out at a beautiful blue sky. :( But I would rather be here right now with the way he is feeling. I would have been livid if they sent us home with him like this. Because he has a pretty strong tolerance for pain and discomfort and will usually play on through with out any complaints so for him to be acting so weak and tired I know that he isn't feeling right. On the up side he is fully starting to "deflate" lol His belly has gone way down so he is having an easier time breathing. Oh this is sad, he hasn't said 2 words all day but he is talking in his sleep right now. "Ok, ok" and then I think he said something about Nana. lol It is good to hear his little voice even if it is pretty incoherent.

Dave was going to come up today but he is under the weather so he isn't allowed. Which kinda sucks for us, it would have given me a break and Donavynn was looking forward to it. But we can't have him hear like that with Donavynn and all the other kids up here that are susceptible to so much. It is better for everyone if he just stays home. When I talked to him last he was at the store getting us things that we will need when we come home and trying to be ready for us to come home. Let's hope he feels better too.

I guess that is all for now. I'll post again later with the C-diff results.

Saturday Morning Update

Last night proved to be a pretty rough night as well. Donavynn now has diarrhea so he was up about every 15-30 minutes with that. We are waiting for them to get the creams up that they ordered to help his bottom. His fevers have been revolving around the Ara-C and since he finished his last dose of that around 6 or so this morning lets hope that they are done. They haven't decided yet if we'll be going home today because of the diarrhea. We'll know more in few hours when the doctors round. The nurse wasn't able to find much information on the Erwinia but the doctors said that they'll answer any questions that I have when they round. The info she provided was what I already knew so hopefully the doctors will have more info. That is about all for now. Not much has changed. He still acts like he is feeling pretty crumby, but he has been asking to drink some water. So I'll update later. Gotta help the nurse with the eye drops.

Update Before Bed...

I am heading to bed soon, but I wanted to post an update first. The aid is in here now getting his vitals so I'll know in a second if he has another fever. And he does 102.6. I do feel a little better though that it is likely the Ara-C because he hasn't had a fever since this morning. And he finished the Ara-C 2 hours ago and now he has a fever. But to be safe they are going to draw more cultures. The other ones are still negative thankfully. He has slept away most of the day, the fevers have been really hard on him. We still aren't 100% sure if we are going home tomorrow or not, but my guess is it is pretty likely. He will get his last dose of Ara-C at 3am. The infusions run over 3 hours and then in the morning he will get his first dose of Erwinia. I learned today that he won't be starting the GCSF (immune booster) until AFTER he finishes the Erwinia. With the PEG it is one dose then they start the GCSF but because the Erwinia is 6 doses they won't start it until that is done. This is likely to make him at more risk of infection because he will likely be neutropenic longer. Please pray that he stays healthy. If we go home tomorrow we'll back up again on Monday for dose 2 of the Erwinia. Please also say a prayer that he will be back to his old self soon. The steroids should be about worn off soon, and hopefully once the Ara-C is done he will liven up a bit. The nurse is going to print me off some information about the Erwinia because that isn't one that is my drug book and info on the internet is limited. Once she does I will post the important parts for anyone who might be interested in the medication... like perhaps Grumpy. :) I love you dad, and you too mom. I don't know what we would do with out you guys! Looking back at my life it is hard to believe that we are were we are. Some days it seems like this is someone else's life I'm living. But I know that the trials make us stronger and God wanted me to have Donavynn for a reason. He has taught me so much! Especially since through it all he rarely complains. He is truly the strongest person I know, wise and strong beyond his years. He never puts up a fight when they give him his medicine, poke him, wake him up repeatedly to give him his eye drops or take his vital signs. He just lets them do what they have to do and thanks them when they are done. He has the patience of a saint! So every day, I strive to be more like him. I just hope to one day have half the strength and patience that he does. Warrior doesn't even seem like the right word anymore. It doesn't seem strong enough to describe him.

I would also like to give a brief update on my other little one, Cheyenne. She got a great progress report this week. She has made improvements in everything! No "needs improvement" this week, everything was either satisfactory or excellent! I'm so proud of you little girl! Keep up the good work. To be strong in all that you are facing is a true accomplishment. Keep your eyes on the prize and you will go far! And never forget that I am ALWAYS here for you.

That is all for now. Have a great night everyone!

Finally Sleeping Soundly

His headache is finally gone, the doctor prescribed him some oxycodone because the tylenol just wasn't cutting it. And now is can sleep. When he does wake up he is very cooperative like he usually is, so I'm not sure if that is another sign that the steroids are working their way out or if it is a side effect of the pain killer. We are waiting for the doctors to round to find out what their plan is going to be if his fevers keep coming back. As I mentioned before it is a common side effect of the Ara-C, so if his cultures are still negative and he is doing well they might just send us home. But we'll see. I need to stop trying to predict how things will go for him because as soon as I assume something the opposite happens! lol Well I should go work on my paper while he is sleeping, so I'll update again when there is more to tell. Just wanted to let everyone know that he is resting now and has no more "owies" Thank God, I hated waking up hearing him moaning like that! :(

One long night!

Ok sorry for the lack of updates yesterday, but until last night there really wasn't a whole lot to tell. About an hour into his Ara-C he spiked a fever. Which is a common side effect of the Ara-C, but they drew cultures and started antibiotics anyway just to be safe because he did have a fever a few days ago. The fever went up and down most of last night. And with it comes a headache, which Donavynn has been complaining of. He woke me up just now moaning in pain. This is probably one of the roughest stays we've had, not the roughest but it's up there. They have him on constant IV hydration so he literally had to pee every hour on the hour last night. We put a pull up on him just in case and at one point I think he just gave up and used it. This is really kicking his butt, and I can't wait to see my little man back! So the eye drops haven't been fun at all. He needs them every 3 hours and they alternate between a steroid (decadron) drops and saline drops. The sad thing is he has to have these every 3 hours around the clock until we go home, and then for 24 hours after we get home. He has been a trooper but eye drops are one thing that he has a hard time dealing with. And who can blame him, I'm not one for them either. So we are going to probably be sleeping through most of today if we can, because sleep was a distant dream last night! lol But we were blessed to have a visitor yesterday. Angela from Myspace, who I've been talking to for awhile lives pretty close to the hospital and asked if it would be ok if she swung in to say hi, which she did. And she brought Donavynn some pretty cool shirts! (I have pics I'll post later) She plans on coming back for another visit today. (Thank you Angela for taking the time to stop in and see us!) She got to see some of the Donavynn we know and love! I have video of him laughing, hysterically for no reason yesterday. It was the funniest thing! Hopefully we'll get to see more of that today. Time will tell, right now he isn't really having a fun time, or experiencing anything worth laughing about. With the fever he isn't allowed to leave the room until he has been fever free for 24 hours, so he wasn't able to take Spike for a walk! :( Which bummed him out. But now, I don't think he cares much. Please pray that he starts feeling better. He is so brave and so strong and it is so unfair that he has to endure so much. I'll try to update again when I am a little more awake. This may be a lot of incoherent mumbo-jumbo, because I'm half asleep at the moment. If so I apologize. Thanks for the prayers and support.

So here we are...

Ok well he hasn't had a fever since yesterday afternoon and his cultures are still negative more than 24 hours after they were drawn so they are going to proceed with the treatment provided he doesn't spike a temp between now and then. He is just laying in bed watching Alladin, and he seems to be pretty happy. Tired, but happy. I'll update again when there is more to tell.

Update on the chemo plan and Team Donavynn

Nancy called and got the approval for the Monday, Thursday, Saturday schedule. Because either way there will be a 2 day gap (either Saturday, Sunday, or Tuesday, Wednesday). So the Erwinia schedule is...
1st dose - October 17th - Friday, our last day for the High dose Ara-C, round 1.
2nd dose - October 20th - Monday
3rd dose - October 23rd - Thursday
4th dose - October 25th - Saturday
5th dose - October 27th - Monday
6th dose - October 30th - Thursday

Then we start this all over again on November 6th. She also informed me that the next round after consolidation is probably going to have us hospitalized for Thanksgiving (I need to look into that a little further to verify if she meant on Thanksgiving or around Thanksgiving). And Donavynn's last dose of steroids is Tuesday morning! We are all so excited!!! So those are the chemotherapy updates. 1 word - chaotic! lol

Just so everyone is aware as well, my computer is currently sitting at Staples because the screen is scrambling. They removed a bunch of spyware (which pisses me off because we have anti-virus software!) and have been trying to diagnose the other issue but are having trouble because the darn thing keeps shutting itself down and they believe it is overheating. So it is likely that we aren't going to be able to afford to fix whatever it is. If that is the case, I won't be on much. I am currently using my husbands laptop, but won't be able to use it as much as I could use my own obviously. So the plan is, if we can't fix it, to get a macbook at tax time. That way I won't have to worry about the virus issues anymore, and it comes with a 3 year warrenty instead of this crappy 1 year warrenty that pc gives you. But obviously that will have to wait until we can afford it, and we aren't even sure if tax time will be a good time. So I'll keep you all posted on that minor issue. I just wanted everyone to know incase the blogging slows down a little, that is why.

Anyway, Donavynn is doing well. Spends most of his days resting and flipping through the pages of his little notebook. Which we don't get. I'm thinking it is a comfort thing, but it makes me think of OCD. I asked him why he does that and he said "Because I have too!" He has been really tired, the steroids just drain him. So much so that his friend Trinity was here Friday night and he didn't really play with her much either. I hate that, I miss seeing my little boy play and be full of energy. For example, we are lying in my room now, it is completely dark and he is just lying there flipping through his notebook, hasn't even asked for the TV to be turned on, which used to be the first thing he would do in the morning. Sometimes I really wonder what is going through his little head. I wonder if he is as sad in his, as I am in mine. So we are praying that though the next few rounds have us practically living in the hospital that they won't be as physically hard on him as the steroids have been, and that his organs, bones and his eyes are protected. We miss seeing our happy go lucky little man.

Cheyenne has been doing well. Bringing her grades up slowly still, just plugging along. She has been pretty helpful and happy, and finally seems to be adjusting to everything. She has been driving her brother a little crazy with normal kid stuff but other than that she seems to be having a little bit easier of a time of it. One step at a time, and we are all slowly falling into our new lives again. I however am having a little bit harder of a time of it. I'm guessing it will get easier like it did before, but I am having a lot of the same feelings that I had when he was first diagnosed. Those feelings got better with time. As treatment wore on they didn't consume me as much. I think it would really help if I could talk to a few families who have gone through this particular treatment. Maybe I need to talk to Nancy to see if she could arrange that. It would help to have more of an idea of what to expect, and see some of the success stories. I hate that we have all been consumed by this world that we all once knew nothing about. The only good thing is that in the knowledge we have acquired we can help to work towards the cure by spreading awareness to all who will listen, and doing our yearly fundraising to help the cause. It just isn't fair that kids have to endure any of this.

Dave is doing well. He is having a hard time with the new treatment schedule, we won't be seeing much of each other. But other than that he seems to be coping well. I think it helps him to work. It lets him get his mind off of everything. And though that is why I am still in school, hoping that it would have the same effect, it doesn't seem to be working quiet as well for me. lol But like Leona Lewis says "It will all get better in time."

FYI: For anyone who wanted the bracelets, I'll be ordering them as soon as possible. Perhaps you could comment this blog, (let me know how many) so that I remember who everyone was (if you read it) because I had a document saved with everyones names on my computer! And if all goes as I am hoping it will, I can place the order next weekend. So if there is anyone else who wants to show their support for Team Donavynn let me know - the bracelets are 3 dollars - they will be purple/white swirl and say ~ Team Donavynn ~ Leukemia Warrior. As I said in the bulletin, send no money yet, I'll notify everyone of when the order has arrived and we can set up something as far as paying via paypal, or whatever works.

Let's see, what else is new......... Not too much, having problems with my clinical instructor. Don't have a lot of patience for nurses who think that they are God. But other than that we are lucky that our life has been pretty boring for the last few weeks. God how I love boring!!! Please keep sending up those prayers, people are asking what they can do to help, and that is all that we need. Prayers. Everything else will be taken care of one way or another. But prayers need to be storming heavens doors, asking for his complete healing, for him to be cured! Asking for his organs, bones, and eyes to be protected and not damaged from these harsh medicines, asking that he tolerate ALL the chemo's well with NO allergic reactions! And asking that our family finds the peace, comfort and courage that we need. I probably won't be blogging again until Thursday. If I have the time I am going to try to find a prayer map that I can put on here, so keep an eye out for that if you would like to sign it. And if anyone knows where I can find one, let me know. I hope everyone has a great Sunday.

Nancy Called...

We were mistaken, it is 6 doses of Erwinia to 1 dose of PEG, and that can't start until he has had his 2nd dose of high dose Ara-C. So it is going to be a rough month.

On another note, this is a prime example of how Mercy does what St. Jude does, just without advertising it! That amazes me!

*EDIT*
Talked to her again, He also gets GCSF during the next round. Which is something they don't usually give to leukemia patients because it boosts their WBC count. But they give it after the Ara-C because it is high dose and they are trying to prevent FNP (fever/neutropenia) stays, this will also help prevent infection. It is a sub-q injection that I will have to give him nightly for 7-10 days after the Ara-C, they will monitor his counts every couple of days and stop the injections after his ANC reaches 1500. I also learned that he will need eye drops to protect his eyes from the Ara-C during those rounds of treatmet. I'm a little freaked out right now! But just thought I would share the added knowledge that I have just learned.

Today's Clinic Appointment

Clinic went well today, overall. I was a little livid over the Pentamadine mix up (he was supposed to get it aerosol, and the pharmacy sent up the IV version instead, I wasn't in the room at the time and though my mom questioned it they said, "No, he's getting it IV this week.", 2 minutes after I get back to the room Nancy (his NP) comes in and says that they'll be starting his aerosol soon! ) I was pissed, she apologized for the mix up and said it would be taken care of next month. But anyway, the rest of the day went well. Donavynn was pleased that he got a clinic room with a Wii in it, so he spent the morning playing that. That surely spiced up his bad mood. We learned today that he has gained 10 lbs on the steroids and he'll be glad when they are done. That is what he told the nurse - "I'm puffy because of my medicine, but I'm still cute!" lol And he is, as adorable as ever. I have pics that I will post when I have time. His LP went well. That is the last one for 6 weeks I believe. He starts consolidation next week, which means we will be having our first hospital party. He is allergic to the PEG so they are ordering him the Erwinia. The only downside to that is for every one dose of PEG you need 3 of Erwinia so he will need to get that (at the hospital) Monday, Wednesday and Friday on the weeks he needs it. So the tentative plan for now (if they can get the Erwinia) is to go up Monday and to stay up from Wednesday to Saturday - he has to be an inpatient for the Ara-C on Thursday and Friday. We aren't 100% sure if they will be able to get the Erwinia or not, it is experimental so his insurance won't pay for it. So they are trying to get the hospital to pay for it, which they should, thankfully, (It is $6000 a dose or $1800 a week when he is on it twice a month for this phase) we just need to make sure that they can then get the medication.

His ANC is good still, it is actually higher than last week - 7400. Which they said isn't surprising becasue of the steroids and they want them to be up because I believe the next phase is count dependent and the Ara-C will drop them quick and hard. So that is when we will be worried about infection.

Tonight he is exhausted, sleeping already and he was complaining of a headache from the LP. My heart breaks for him. I hate to see him feeling like this. Although I have succeeded in my quest - he is actually looking forward to his hospital party next week. Remember, for updates next week you will have to check the blogspot (Wednesday-Saturday).

It came up in conversation at clinic today that Mercy does between 10 and 20 BMT a year there! That floored me! That is a lot. I guess that is good in one way, they do a lot so they know what they are doing. But so sad, that there are that many children needing them.

I am desperatly trying to find positives in this experience that we are living right now, and one that I found was that having inpatient stays for treatment instead of fevers may allow me to talk to other families and possibly make some local friends who understand our battle. Before we were only in for fevers which means you aren't allowed to leave the room, well he's not, which means I don't leave much either.

I feel like I am forgetting things. It has been such a long day and so much has happened. He has adapted well to this schedule again. He understands everything as best as he can and he just rolls with it. Today, we were getting out of the car to go into clinic and I put his mask on him and he asked "Mommy, am I neutropenic?" My heart broke, it still hurts that he knows that word and that he knows what that means, but the upside is that he understands that when he is, we are hermits for awhile! lol He used to yell when he was neutropenic because he would get such cabin fever but now he understands and goes with it. I think that is all for now. I'll update again when there is more to tell. Thanks for the prayers please keep sending them up!

Team Donavynn Bracelets

I am considering doing the silicone bracelets that say
~ Team Donavynn ~ Leukemia Warrior in a purple/white swirl. But before I decide I would need to know how many people would be interested. They would be $3.00 each. Please let me know if you would be interested and if so how many you would want. And then I will order them and drop you a personal message to let you know when they will be in so that you can send your check or money order or pay via paypal. I may even be able to put them up on ebay if I can figure out how do to that with multiple quantity items at a set price. But if there isn't enough interest I won't do it. I don't want to run into the same problem that we had with the T-shirts.

Thanks!
~Team Donavynn~

Heading into week 4/Last week of induction

We are going to be happy for our little man to be back off the steroids. His appetite is good, which is always a good side effect of the steroids. But he's so swollen now that most of his clothes don't fit and he seems to be even more uncomfortable. He has been sleeping good, and this has been the best week of the steroids I think. He has been in a pretty decent mood. He just gets really tired, really fast because being that swollen can make it hard to breath. He had a great weekend, he really enjoyed his friend Trinity's birthday party and had the best time at the movies. We highly recommend Beverly Hills Chihuahua. It was the perfect family weekend.

Donavynn woke up this morning and the first thing he said was "Do I have surgery tomorrow?" I don't know how he figured that out, how he got the days down. But thankfully we were lucky enough to get another morning clinic appointment so it won't be so long for him to go without eating. I believe that next week will be our first hospital party, I am pretty sure that week one of consolidation is an inpatient week so we'll see and I'll keep you posted on that. Hopefully we can make it really fun for him. I'll have to check out the squirrel tales website to see if I can find some other ideas on how to make it fun for him, but I'm pretty sure that he is going to thoroughly enjoy parading spike up and down the hallway, driving the nursing staff nuts! lol

Cheyenne's grades are coming back up thankfully, so I gave her the go ahead to go back to Volleyball. She needs that time for herself, to be with her friends. She just had a rough start to the year I think. But she has been asking for help with things that she doesn't understand and she has been bringing home nothing less than an 80 on every paper, so I think she is finally starting to get it. I know that all of this must be really hard on her. We are honest with her about everything but I'm sure she is still terrified, as we all are. But with every little step we all are getting better.

That is about all for now, I'll update again as soon as I have time after clinic tomorrow.

Please continue to pray that Donavynn continues to do well, that his body handles the treatment well, and that he stays in remission for good this time. Please also pray that his body stays free of infection as his counts are very likely to be very low very soon, if not this week.