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.