Updates!

Any of you out there raising a child with cancer know that there is little that they will eat. Most of the time they find their favorites and that is all they will touch and every now and then they change their minds. One month all they will wnat is pancakes and then the next month all they will want is grilled cheese. It goes in cycles. This has always bothered me. The doctors say if he is eating they are happy, but I want him to try new things and enjoy all the different foods that are out there instead of living off of hotdogs and grilled cheese. This lack of interest in food is related directly to the chemo - apparently it changes the taste of many foods, or makes them lose their taste all together. Well 2 days ago my mom was over for dinner and we made mesquite pork chops, rice and brocolli. Donavynn said he wanted to try it because the night before I had made a BLT and he tried the bacon which he said he liked. We told him that pork chops were similar to bacon. So he agreed to try it. For the first time since I can remember we made him a plate with everything that the rest of us had and he ate it! He didn't like the rice but he ate the rest and he tried everything! Then yesterday he ate peanut butter and jelly! This is a huge accomplishment and with every bite of pork chops my eyes watered. This may seem odd to some people but to me this was my son slowly doing more normal things. I gotta run to the store so I'll end there. But I will likely blog later as there is so much more to tell.
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Ok so let me finish what I started earlier. Cheyenne's grandmother was discharged from the hospital on Monday and is doing better. Thank God! I had a long talk with her tonight and that was so nice. She was like a mother to me for so long and things had been weird since my divorce. But she is such an amazaing woman and has helped us out so much with Cheyenne and even when Donavynn was first diagnosed. We discussed Cheyenne possibly attending the camp for cancer siblings next year. I have wanted her to be able to do that forever but I hate to take away any time from her dad or her grandmother. But it is only a week long so she would just be leaving a little later than usual. We both think that it would be really good for her. She is such an amazing little girl but she had dealt with so much in her short life. Things weren't easy for us when she was little because I had her so young and then her grandfather passed away, she got 2 new step parents, she knew of my miscarriages, and then Donavynn got sick. And that is just the tip of the iceberg. It is a lot for anyone especially a child to deal with. Through it all she has been a trooper, but I think that much of this is where her behavior problems come from. So hopefully the camp will help her a little, to try to interact with other children that know what she is dealing with. Sadly, it isn't something you can understand unless you have actually been through it. The same goes for the parents. It is very hard for people to understand what we deal with, and what we feel on a daily basis if they haven't been there. Many people think I'm nuts because of how much I worry about germs. But I have to worry about those things because infections, even something simple could be a huge problem to him. So much of my life is spent worrying - I swear I'm going to give myself an ulcer! lol So hopefully in less than a year now that will get a little bit better. He will finish treatment next June if all goes according to plan, and though that might make things a little better I'm sure I'll still worry because then it will be up to his body alone to stay healthy. I have been so blessed however to talk to a few people lately who know survivors. One of the ladies who donated for the benefit has a son who had leukemia - he was dx in 1984 and is doing great! And a friend of mine from school also knows someone who had it as a child and is also doing great. Hearing these stories really helps. And we look forward to the days where we can tell people of our success story and give them hope! Something many people don't understand is that many of us - the parents of cancer patients become a family of sorts. We fight the battles together, show support and offer hope. Without these people we would all be lost. In talking to others I have found peace and have been able to move forward and relax a little. But in the begining it is all consuming. I know I probably hurt a lot of people in the begining because I didn't know how to deal with all that I was feeling and when you feel that alone and lost it consumes you. It becomes sort of an abyss that you can't find your way out of until you talk to others and can share your stories and realize that you aren't alone. Then the healing begins. I love the normalcy that we have been able to find recently. It is a wonderful feeling. Donavynn has made so many steps this summer and become so much more mature - more like a four year old is supposed to be. Every day it seems like he is doing something new and amazing us. For example after his birthday we got him sleeping in his own bed again, then he started getting up in the night to take himself to the bathroom and then going right back to bed with out a fight! We got rid of the pullups all together after the diarrhea stopped, even during steroid weeks and he is doing great. He can get up on the potty all by himself now which used to be nearly impossible for him because he has serious coordination issues since his brain infection 2 years ago. He is trying new foods like I mentioned earlier, and a week ago - this was so cute and so amazing to us knowing how he is that we couldn't stop talking about it. We told everyone who would listen and it seems like something totally silly! Before when he would wake up in the night with a terror or a bad dream he would lay in bed and scream and scare the daylights out of us. But last week he got up and crawled into bed with me. I woke up in the morning thinking that Dave had a rough night with him and Donavynn said "No, mommy I sneaked in here!" (lol) So I asked Dave about it and he said "No, when I came home he was curled up in a ball on the edge of the bed, like he was afraid to get to close and wake you up, so I thought that you put him there." And Donavynn told me "Mommy, I was scared so I came to lay with you!" We thought that was so funny. He did it again a few nights later and then when Dave came home Donavynn opened his eyes and said "HEY, what the heck are you doing in here!?!?" That cracked me up! Dave just kissed him and left I would have said "Well what the heck are you doing in here?" lol He hasn't done it since because we told him that if he wakes up all he has to do is sit up and look around and see that there is nothing to be scared of and go back to sleep. And so far that has worked. He is very proud every morning when I go in to get him and he is still in his own bed. He just seems to be maturing more and more every day. It is so great. These little things really warm our hearts.

On another note - yesterday Dave and I celebrated our 4th wedding anniversary! And if it is possible I think we are happier now than we were even on our wedding day. We are truly a team, and he is such a wonderful husband. I can't believe it has been 4 years already. He is such an amazing father as well, which is why it makes me a little sad to know that we will only be having one more child. A father as good as he is should have a ton! If I had my way I would have at least 5. I am looking forward to being a nurse but growing up I only aspired to be a wife and mother and that would have made me perfectly happy. But in todays day and age you pretty much need 2 incomes. Oh well, maybe God will answer my prayers and give me twins next time and then I can have 4! lol Working toward that goal of getting pregnant next year I started my diet about 8 days ago now. I have been tracking my caloric intake and physical activity on www.mypyramid.gov. It is a great site. I'm sure it isn't 100% accurate but it has really helped me and I've lost 2.5lbs. All you have to do is eat at least 500 calories less per day than recommended and you will lose about a pound a week. I have cut mine way down and am eating about 1500 calories a day on average. And I feel better already. Eating healthier has given me so much more energy and being so much more active has done the same and even help me sleep at night. I'm really proud of my progress.

Sunday is going to be a fun day for us. Dave is going to take Donavynn out for awhile because I have a few frineds from school coming over to practice medication calculations before school starts up again. We have to get 100% on the test every semester so we need to practice, practice, practice! And after that we are going to have a BBQ and hang out. It should be a lot of fun. Though my life is crazy during school I am really looking forward to going back. I miss seeing my friend every day, and having a little time out of the house. I am also looking forward to the fall when the temperature isn't into the triple digits - I love the fall - I love taking the kids trick-or-treating, I love Thanksgiving, I love shopping for school clothes and supplies I just love everything about the fall. Donavynn is really looking forward to going back to school as well. This will be his last year in preschool which is sad, I can't believe he'll be going to Kindergarten next year! But it should be a great year! And Cheyenne will be in 4th grade! Where does the time go? Anyway, I am finding myself rambling. I know I haven't blogged in awhile so I just can't stop typing! I hope this finds everyone well. Enjoy your weekend!

Updates

This was the most recent update that I posted on MySpace and I forgot to transfer it over to here as well. Not much else going on. We go again Monday to have his counts checked and see if they can increase his chemo again. But that is all.

Updates
Current mood: worried
Category: Blogging

Thankfully things have been going well here. Donavynn started this months steroid pulse on Monday and so far this time has been much better than the last. He is only on 50% of the normal dose of his chemo's because after they have been sick they have to slowly be brought back up to their full dose to prevent them from bottoming out. Clinic went well, his ANC was 1093. And he has had a great time lately. We have been very busy, outside swimming and playing with his friends Trinity and Conner, as well as his cousin Derek. Cheyenne is having a good summer as well. Today was a scary day for me though. She is staying with her grandmother and they called today to tell me that her grandmother is in the hospital with meningitis. So I have been a mess all day, but they called a little while ago to let me know that it is viral so all is good. I always miss her when she is away but I have never really worried too much when she is with her grandmother so this was really difficult for me. Thankfully from what I have been reading even if she gets the virus it is unlikely that she'll develop meningitis as well, it is more likely that it will manifest in some other way. She will be home in a month and I can't wait. This summer has gone by so fast but I can't believe there is still one month until she comes home.



Donavynn is looking forward to next month because he gets to go back to school. He really misses school!

In other news the fundraiser planning is going very well. We have a place - an awesome new indoor park, and Country Kitchen has donated all the food needed. We also have many great sponsors that have given us some cool items to raffle off, and my sister is buying the tshirts to sell. So it should be a good night. That is about all for now. Thankfully things have been pretty uneventful until today. Please say a prayer for Cheyenne's grandmother Chris that she gets better fast - her daughter is getting married on August 9th. And pray that Cheyenne continues to stay healthy. Thanks so much!

Finally Home!!!

His diarrhea still isn't gone 100%, and we are now on day 17. But it has slowed way down to a few times a day and it is managable to keep him hydrated at home. The sad thing is we still don't know what is wrong and they ran every test you could think of. The parvo test came back negative, which is good. But that still leaves us without an answer.

On our way home yesterday, Donavynn started coughing and then got sick in the car. My poor kid has the most sensitive gag reflex. But after we got home he was fine. The fever is still gone and we are hoping it stays that way because he is still neutropenic and if it comes back we have to go back up to the hospital. He ate good last night and played like a mad man! It was so good to see him happy and playing. And then for the first time in a week he was able to go to bed in his own bed and listen to his bedtime music. We all had a great night!

He is getting ready to eat his breakfast so I better go, I just wanted to let everyone know that he is doing really good. We have to have his counts checked again on Monday and if he is no longer neutropenic he can go back on his chemo.

Thanks for all the prayers!