Week 3 of New Treatment

Clinic went well yesterday. We were actually home before 2 o'clock. I love morning appointments but we don't get them often. He seems to be doing well. His ANC is starting to drop, it is now 3700 down from 9000 a week ago. So we are getting in our last week of fun, we are hoping to go see Beverly Hills Chihuahua and going to Trinity's birthday party this week. But we'll see how he feels. He is very swollen and that makes him out of breath often when he tries to play, which tires him out even more. His crankiness comes and goes, and actually didn't show up at all today. But yesterday morning was rough. He fought me on getting dressed, for the first time, I think ever! I would get one leg in his pants and he would pull it out and scream at me. So that was no fun. But I keep telling myself that it is only 2 more weeks. And I know we are all looking forward to him being off the steroids, but dreading the new phase, just the same. I'm still not sure how the next phase is going to go. I think he'll still have treatment every week with 2, 2 day inpatient stays thoughout that month. I guess we'll find out next week how things are going to go. I am terribly anxious. And though it has been 3 weeks I'm still so heartbroken. People ask how he is doing, how I am doing. My response is, fine. If I go to far into detail about how I am really doing I know I'll cry. I hate seeing my baby endure so much. I am grateful that he can understand things better now. That he knows why he can't eat on LP days and doesn't fight about it, that he understands when his counts are low he can't go anywhere. Those things do make things a little easier. But the questions are heartbreaking and seeing his body change again is hard. Knowing what is to come is hard. Before we were blissfully blind to what was around the next bend and now we know all to well what is in store for us, well mostly.

Anyway, sorry about that... sometimes I just ramble. So as I was saying treatment went well this week. He didn't even cry when they accessed his port this time, not even a little! And he usually cries a lot when they deaccess him but he didn't shed a single tear this time. We kept him talking and focusing on me and Nana and it worked. His courage, strength and bravery amazes me and makes me so proud! I am so blessed to have one of the strongest little fighters as my son! I don't think that our family would be doing so well if he wasn't as brave as he is. His pain breaks our heart but it helps a little when he tells us "It's ok, I'm brave!" It is funny how things work, we keep a brave face to help him and his brave face helps us.

It's been awhile...

Sorry about that. But as the saying goes, no news is good news. Not to much has been going on here. Donavynn has had treatment every Monday since we got the news. He has been on steroids and has 2 more weeks of them to endure. He is swelling up and cranky a lot of the time, but other than that he is doing good. His counts were good last week, we'll see how they are tomorrow. They should be dropping soon if they haven't already.

His teachers came to see him on Thursday and that made his day. They brought him some presents and the stuff that he did in school and stayed and played with him for a little while. They are working on a book in school that they are going to bring to him so I'm looking forward to seeing that.



This is Miss Carol and Miss Lucy is holding Donavynn.

Donavynn had his first PAT (Parents As Teachers) meeting a couple weeks ago. Cara came and played games with him. They give us little game ideas to play with him and things you can make from everyday stuff you have around the house.

He loved every minute of his fun time with Miss Cara. He has been pretty tired from the steroids, even asking to go bed, and to take naps. Which as you know isn't normal for a 4 year old. He spends a lot of time resting on the couch with his Magnadoodle, or sitting and playing with Spike his dinosaur.
Or playing outside, he recently learned how to peddle his bikes so he rides his big wheel all up and down the sidewalk. And when we have time we are sure to take him to the park to enjoy riding his Power Wheels. We are trying to let him enjoy as much as possible while he still has some energy, because he is likely to feel pretty whipped soon. And he has planned hospital stays for treatment starting next month. That is when things will get really tough. But he is strong and he always tells me how brave he is. I just ache, knowing what my baby has to endure yet again. It makes me so angry sometimes.

So that is about all for now. He has treatment again tomorrow and I'll try to update afterwards if I have time. With treatment and school I am pretty busy, but remember no news is good news!

Thanks for the prayers, keep sending them up. For protection of his body throughout treatment, for him to stay healthy throughout treatment so that chemo won't have to be delayed and for no more cancer, EVER!!!

Drum Roll Please!!!

WE HAVE REMISSION IN HIS CSF!!!

I haven't been this happy in so long! The best part is that we now know it wasn't because the chemo stopped working, he just wasn't getting enough. When a relapse occurs that is usually why it is so bad because it means resistant cells. We praise God that that was not the case with Donavynn and continue to pray that he holds his healing hand on him throughout this battle that he is faced with.

He handled treatment today like an old pro and for the moment his counts are fabulous. We may have to find some fun stuff to do quick this week before they begin to fall.

They are going to keep him on the Dexamethasone because of it's ability to cross the blood brain barrier. So I asked Nancy if the bone issue happens can they fix it. And she said yes! They would have to take him off the Dex to do so, but the damage most likely would not be permanent. So that too was good news.

His courage and spirit amazes me! While we were waiting in the waiting room his doctor walked through and Donavynn cheered and said "WOW, DR. SHORE!" It was so cute! How many kids would be excited to see a doctor who has to do so many things that hurt him. But he understands that they do it to help him get better. I have found if we explain everything to him he understands and accepts it. Like this morning, he got up while I was in the process of eating breakfast. I told him that I was sorry and I had tried to eat before he got up because I know how hard it must be to not be able to eat and he said "It's ok, I can eat after treatment" What an amazing attitude. I don't think I would have been quite that understanding! lol

So that is about all for now. We start 28 days of steroids tonight so please keep us in your prayers, pray for sanity! lol

I thank everyone for the many prayers that have been sent up this past week, they are doing wonders, please keep sending them up! Ok, gotta study! Big test tomorrow. Have a great night!

Oh yeah, and his echo cardiogram was normal too! So his heart is still strong, lets pray that it stays that way! I have pics of today that I will get up asap.

We Have A Plan!

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And now it is time to get in fight mode! Ok so the beginning of the week started out terrible, but each new day brought some good news. We sat and talked with his doctor for an hour and his nurse gave us a copy of the protocol. This one is going to be a tough one. But it will be well worth it and it has worked well for others. I have always been happy with the Children's Oncology Group, but lately I just love them! With out them and all the work that they have done we wouldn't be here now, with a new plan and hope. So this protocol starts out just like the last one with 28 days of Dexamethasone, Vincristine and IT Triple Therapy (which is different instead of just Methotrexate he'll be getting that, Ara-C and Hydrocortisone) weekly, and 3 once weekly doses of Daunorubicin AKA the red devil. The doctor also said that usually remission is when induction is over and the CSF and marrow are clean but since his marrow isn't involved he will technically be in remission once we get a clean LP back (which we are hoping will happen on Monday) So he starts this round on Monday. Fevers are likely with the Daunorubicin. Stage 2 is Consolidation from weeks 5-10, he will be hospitalized for days 1 and 2 as well as 22 and 23 of this round for IV Ara-C. That will be when things get tricky because the Ara-C will drop his counts too. The rest of the plan I still don't understand completely. I know that he will need to have an ultrasound of his heart and EKG because of the Daunorubicin, and that at 1 year radiation begins but I'm not completely sure how often he will be getting radiation or for how long. The up side is though we are starting over it is only 2 years instead of 3 1/2. I will explain more when I know it.

Through all this my main concern is always Donavynn, but in the back of my mind I was also devistated about having to quit school again. This was where I was before when I had to quit. My family and teachers have been telling me all week to wait and see and that they will help and work with me. That we can't afford for me to quit for many reasons. The doctor agrees. So the plan right now is to try the best that I can and get as far as I can. With the support group that I have in all of this and only having classes 2-3 days a week depending on the week I think we can do this. But if things get rough I know that school will always be there. I am just going to pray that he stays strong and that the chemotherapy and radiation do what they are supposed to do and not what they shouldn't. A fear with all of this is secondary cancers and heart problems. So please continue to pray that we aren't ever faced with that and that when this remission is declared it stays that way once and for all.

So basically we are in for a long road, but with the support that Team Donavynn has from other family members and the fantastic friends around us as well as the wonderful medical team that we have I know we'll all be just fine. I don't want people caring for my child that don't actually care about him. And I never for one second doubt that they care about him. Through all of this they have become sort of like family. And to see how his relapse affected them touched me, because it proved that they really do care for him and are willing to fight just as hard as we are to fix this as well as to treat him with kindness and support to help him get through this with out fear.

I was reading KCC's bulletin tonight. It has been a rough week for our fellow warriors as well. We lost one warrior and today another little boy relapsed as well. I will be reposting that bulletin, please take a look and add them and their families to your prayer list. Thank you for the prayers and please keep sending them up!

Nancy Called!

And the bone marrow is NEGATIVE! I have finally breathed a huge sigh of relief! I was hoping that they might call and let me know if everything was ok, but also understood when Dr. Shore said that we would discuss them Friday so that we wouldn't automatically freak out if we didn't hear from them. So thank you all so much for the prayers and please keep sending them up. The news is good, the best that we could have hoped for under the circumstances but we still have a long road ahead of us. Starting over won't be easy but we can do it and it will be a little easier with your prayers and support to help us through! So now we will find out the game plan tomorrow. Where we go from here and I will post that when I get home.

Please continue to pray:
That Donavynn continues to get better and reaches remission soon and stays there this time!
That the plan they choose for him is the very best for him.
And that he is able to stay strong and handle the treatments well without any side effects to his little body.

Spinal Tap Results

Ok so his blast count on Wednesday in his spinal fluid was 1300 and yesterday it was 185! So the Methotrexate is working and hopefully the dose that he got yesterday will wipe out the rest of them! Unfortunately we still have to wait until tomorrow to get the bone marrow biopsy results but this was definatly good to hear. I just hate waiting. I'm not very patient when it comes to things like this.

The steroids are doing their work on him too. I know that they help and I know that is where his attitude is coming from so we are just taking it all in stride. He has been so cranky this week! lol With the "I don't like you's, I don't want you's," and crying at the drop of a hat. So we came to terms with that along time ago - when Donavynn is on steroids, Donavynn gets what Donavynn wants! lol He is resting right now, watching one of his favorite shows - The Wonder Pets. That is something else the steroids do - make it really hard for him to sleep at night and then he rests or sleeps a lot during the day. I was just happy that though yesterday was a steroid day he did so well. He was happy, and brave and did fantastic! He is a true inspiration! Thanks for the prayers and please keep sending them up. Tomorrow's posting probably won't be until late either because we don't have to be there until 2 but at least we will have the results and we will have our plan and then we can go from there. Once I have a plan I will feel better. I'm that kind of person - "Ok we have a problem, what do we do to fix it?" Gotta go wake Dave up and give him the good news. I just feel like a dink! I didn't listen to all my messages last night when we got home I just looked through the caller ID and there was a name I didn't recognize so I didn't worry about it. Then this morning I was looking through it again and it clicked! Duh, it was the doctor calling me from home! To let me know the results of the spinal tap so that we could get some rest. So I waited till this morning for something I had on my answering machine all night long!!! At least it was good news! Will update again when we have more news.

Please pray for:
Clean marrow results tomorrow
Continued improvement/remission in the CSF
The wisdom for the doctors to find the best plan for Donavynn
And that Donavynn is able to hold onto his strength and courage through all of this.

We Are Finally Home!

Sorry to keep everyone waiting. It has been a long day. We just got home. We still don't really know much. We should have the results for the spinal fluid tomorrow morning and we are hoping that there are less blasts in there than there were on Monday. We will know about the bone marrow on Friday. We have to go back up Friday afternoon to go over that and to get the plan layed out so we know where we are going. The procedure was done so late in the day that unfortunatly we have to wait for results. The good news is that his blood work was still ok. So we are hoping that that is a good sign. Donavynn handled everything well. He was as brave as could be and I have a pic to upload later. But that won't likely be tonight. I am thorougly exhausted. We did learn however that the fact that he was in remission for 28 or 29 months is a good thing and does help alot. For right now we believe the plan will be chemotherapy and radiation in a year. A BMT was being considered as an option but we are thinking that if it is just in the CSF that that will not be needed. I can't thank you all enough for the prayers. I have to believe that he had at least one angel with him today because he was just so brave and so strong. He is my little warrior and he lives up to the meaning of his name everyday (his name means dark haired warrior). We decided this morning to try to help lighten the mood as we all had our stomach in knots... we had him wear his new tshirt that says "I put emla cream on the nurse's toilet seat!!!" Everyone got a real kick out of that and it made him smile to know that everyone was laughing at his shirt. So anyway, I will update again when I have more news. Thank you a million times over for all of the prayers and for keeping us in your thoughts these last few days. It helps to know that we aren't alone in this battle. Because it is very easy to feel that way when your world comes tumbling down like it has this week. But we are so blessed to have so many wonderful people both here beside us and here on MySpace to help us storm heavens doors with prayers and just be there if we need anything. Have a great night everyone

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.