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.