Please Storm Heavens Door With Prayers!!!

We are getting ready to leave soon. We have to be at the clinic at noon. So please send up many prayers today that his marrow is clear, and that the doctors found the BEST plan for him! Storm heaven's doors! Sleep wasn't as easy last night either. I took something to help. It helped me fall asleep but not stay asleep. Last night Donavynn was asking me questions about what they are going to do today. He asked "Why?" which was the hardest question of all because I don't know why. But I told him to try to be strong and brave and he said "I can't be strong, but I can be brave!" So I told him "If you ever feel scared look in my eyes and I'll help you feel brave again." And he said "Ok" Then I told him to say "Get out of me bad cells, there's no room for you in there!" So he kept saying it! I told him we are going to kick this leukemia in the pants once and for all and he said "No, don't kick ME in the pants!" lol I explained it to him then he started saying it! He is afraid of the pain today, but I told him that they are going to help him sleep so he won't feel it. So he has had a lot of questions, ones that I have done my best to answer. Lets hope that we will get some more answers today and that they'll be the ones we have been praying for! I don't know if I can handle anymore bad news. Donavynn and I said a prayer last night as well. We asked God to look over him and to lay his healing hands on him. To help him beat this once and for all. So I'm gonna go now. Gotta get ready for the day. I don't think we'll have to stay tonight but I'm not sure, we have a bag ready just in case.

Oh it wasn't a dream...

Thank you all for the prayers. Please keep sending them up! They have done wonders in the past. Sleep wasn't totally possible last night. When I found out all I wanted to do was come home and crawl into bed and sleep and then when I could I tossed and turned and would wake up every hour and lie there and think. Think about the weekly visits and the stays for fevers. About the possibility of a transplant and how scary that is. And the doctor told me yesterday that his best chance is a full sibling which we don't have. We were planning on doing that next summer. I have tried not to cry to much because I don't want to scare him. But it is so hard and it is building this giant knot in my stomach. I explained everything to Cheyenne. And she is scared as well. But I vowed to be honest with her because she always worried before when other things have happened and people didn't give her the full story. She is being a great big sister! Dave took her to school and Donavynn wanted to go, but he had other stops to make so he had to stay here with me. And Cheyenne let him play with her Nintendo DS, boy did that perk him up! He slept good last night. The best he has in a couple weeks I think because for some reason he wasn't congested last night like he has been and is now. He's having some mild roid rage already because we were instructed to continue his medications as usual until we know more. My heart breaks to look at him. To see how happy he is and know that that is all going to change and he is going to feel like crap again. He was just starting to have a normal life and now we have to pull him out of school and keep him sheltered again. In all that was going on yesterday I forgot to mention that his appointment with ENT went well. With all the sinus drainage he has had for the last 2 weeks he has a mild ear infection in the right ear. Which is good, before he would have had a raging ear infection in both ears. So he is on ear drops for the next week. I did some research last night and found the protocol that Nancy told me about yesterday and that made me feel a little better. But they can only use that if it is only in his CSF, I believe. So we are praying that his marrow is clean! The protocol apparently has a 70% success rate, which isn't as good as the 80% he had before but it is sure better than what I was thinking. Now that I know that I am going to try to stay away from the internet researching, it doesn't help usually. It only makes this knot bigger. I will try to get back to people as I have time. But right now I am just blogging to help me organize my thoughts and to give me a release because with all that is going on around me I feel like I am going to explode. In all of this my heart also breaks for Dave. He had trouble dealing with this the first time and he is a complete mess now. He didn't sleep at all last night. So if you could please say a prayer for him that he is able to find the strength and peace he needs to cope with this. Thanks to all who said their phone lines are open but honestly I don't really feel like talking right now. I don't know what to say or how to feel. I am numb. I am desperatly trying to channel the strength, courage and faith that Mackenzies mom had throughout their battle. But it is very difficult. I'm sure that in time it will come but right now all I see is that abyss I saw when we heard the news the first time, when you can't see beyond today. When the future is no longer bright and full of hope but scary and full of to many unanswered questions. I keep thinking this can't be real but in my heart I know it is. I'm gonna go now and help him play with the DS. Please keep the prayers coming and I'll post again when we have some more answers.

A Day We Hoped Would Never Come

I am not sure how to begin this. Today has just taken us all by surprise. Donavynn's lumbar puncture was today. And he has relapsed in his spinal fluid. We go back Wednesday for a bone marrow biopsy and another lumbar puncture. His blood work was good and showed no blasts so we are hoping that it isn't in his marrow as well. But now we just wait. They believe that they have a protocol to follow that has been working so we are hoping that that will work for him too. We'll find out more Wednesday. Right now all I know is that the protocol is much like the one he was ... He will start over with induction etc and at a year will begin radiation therapy. Please send up prayers, we need them as I'm sure you all know relapses at this stage are not good. I think we are all just in shock at this moment. I can't begin to wrap my mind around this. I will post when we have time and update.

Surgery Tomorrow

Just wanted to let everyone know that Donavynn got the go ahead for his tube placement tomorrow. We have to be at the hospital at 8am, so please keep Donavynn in your prayers that everything goes well and the surgery goes smoothly and is free of complications. Please also say a prayer as well that he stays free of infections because any surgery increases the risk of infection. I know it is routine, but I still worry. He had his counts checked yesterday and his ANC is 1000 so they cleared him to go in. They will check them again next week to see if he can be put back on his chemo's. I'm praying that his counts will stay up where they should be and that we are almost through the rollercoaster we have been on. As most of you may know Maintenance is supposed to be the easy phase of treatment and hospital stays are supposed to be rare to never but Donavynn has had a rough year this year. So we are just praying that hopefully he will stay healthy now and will be able to stay on his chemo's. Ok well it has been a long day and we have to be up early so I'll end for now. I'll post again tomorrow when we get home.

The Sweetest Thing

Last night Dave got home and was relaxing before heading to bed when around 1am Donavynn comes flying out of the room saying "Come on Daddy, we gotta go get Cheyenne!" He is so excited that his sissy is coming home today! I think this seperation is getting harder on him than it was before. I just thought that that was the sweetest thing - to see that he misses his sissy so much that he couldn't even sleep. I am going to try to get video and pics of the reunion and will post them asap. It should be a great day! Can't wait to see my girl!

Just thought I would share that, it made me so happy.

One Step Forward And 2 Steps Back...

Donavynn had clinic today and for some reason I thought it was an LP month, apparently I was mistaken and that is actually next month. So we hung around to wait for his counts to come back and unfortunatly he won't be going back up to the 100% dose of his chemo's he is being taken off of them for the next 2 weeks. And is being taken off of Bactrim all together and being switched to Pentamadine once monthly as soon as his counts recover. I don't think the Bactrim has anything to do with his ANC being 500, actually I think he probably has another virus. His counts are doing the same thing that they did in June and his appetite has been poor with the moodiness that I mentioned the other day - these are all usually symptoms of him coming down with something. But because his ANC has been low so many times througout maintanance this is apparently protocol to switch to the Pentamadine. So we have to go next Wednesday to have his counts checked again because if they are still low we will once again have to reschedule having his tubes put in. Which is fine, I understand and agree but it is so frustrating because they take so long to reschedule the surgery that by the time it rolls around he is sick again. And to top it off his one ear is already getting red again. Sometimes I just feel so helpless in all of this. Hopefully this weeks steroids will bring up his counts enough so that he can still go through with the surgery and his ear will not get infected. The only good thing is that there is no fluid behind the drum so that is a good sign. That is about all of the updates for the day. So please pray that his counts come back up and he doesn't get an infection because they are down.

Figured I'd update while I have the time

I thought that I would blog while I had a minute, becasue after this week free minutes will be few and far between. I still have so much to do for the benefit, Donavynn has clinic on Monday then his surgery for his tubes on the 21st, Cheyenne comes home this month and she too has 2 doctors appts scheduled, we all go back to school etc. Things are just going to be a whirlwind! But I'm looking forward to most of it. Donavynn is doing good. No major complaints, he's had some mood swings the last couple of days making we wonder if he might be coming down with something, that is usually the only time that he gets real ornary. Let's hope not! I'm a nervous wreck about his surgery, I know it is something they do all the time and it doesn't take that long but it is still anesthisia and that is nerve racking! I am trying to relax.

Tonight he went to bed early, I have been letting him stay up late but I figured that I should start getting him back on a school time schedule and I'm going out of my mind because it is way too quiet!!! lol I love our evenings together, he is my little buddy, he helps me when I clean and cuddles with me when we watch tv and talks to me about anything and everything. Most parents love the quiet time, I'm going out of my mind! Does that make me odd? lol I'm so tempted to go wake him up! lol

Well I guess that is all for now, gotta get the housework done, try to distract myself before I go wake him up! lol

Hope this finds everyone well.