The Anniversary, Treatment and Dermatology

Well today was a hard day as I expected it would be, but we got through it ok. I tried not to think about it too much, though that was a difficult thing to do. Every now and then I find myself thinking about how simple life was before it had cancer in it, but I stop myself because what is the point of that? He is strong and he is doing well and we are thankful for that. That is all we can do - keep fighting hard and thanking God every day that he is doing so well. What made today harder was the fact that he had treatment today. I don't know what I thought... that because it was the anniversary that we would get bad news? That because this was a terrible day 2 years ago it would be again? That was just my mind messing with me, but all went well. He only needed his Vincristine today so that made him happy - no LP so he could eat! His ANC was 1960 so it is with in the range that they want it. That appointment went quick and well but I called last night to ask them if they could get Donavynn into Dermatology sometime today as well because his skin has gotten even worse and nothing is helping, and his next appointment wasn't until next month. So they squeezed him in. The doctor seemed absolutely clueless as to what it could possibly be and seemed to be grasping at straws when he noticed that it had now spread to a tiny patch on his hand. He said "Well, I'm going to check for scabies first" I was thinking - "Whatever dumbass - if it was scabies it would have started in the hands not everywhere else and the entire house would have it, but run you stupid little test" What do you know - I was right and it was negative. So the next step was to finally do the skin biopsy. They came in with a blanket to wrap him up in as a restraint after they let the Emla numb his skin. I told them that that would only make it worse and that would make him fight whereas if you just explain it to him and tell him to hold still he'll be fine. And he was. He laid perfectly still while they injected him with something else to give a little added protection against pain and while they did the punch biopsy - that is where they use this little thing to punch a whole in the skin kinda like a hole puncher. He didn't even flinch. They then had to put two stitches in it. We have to keep Bacitracin on it and the area on his hand that they scraped for the other test to prevent infection and he has to go see the pediatrician to get the get the stitches out in 10-14 days. He said that the area on his head looks like psoriasis and after looking at some of the pictures of the different types of psoriasis I'm starting to think that that may be what it is. I really really hope not but I won't be surprised. The type that it looks like is called Guttate Psoriasis. But the area on his arm is starting to look a lot like plaque psoriasis. The good news is that if it is that the skin biopsy will tell us, the bad news is that the skin biopsy may only tell us what it ISN'T. That should be back in a week or 2. They are going to do a fungal check as well since he had a fungal infection before and with him being immunosuppressed that isn't out of the realm of possibilities. I just wish that they would figure it out. And I am praying that it isn't psoriasis and that it is something easy to cure. He was sitting in the tub last night and he looked at his legs and then he looked at Dave and said "Daddy, what's wrong with me?" It broke our hearts! He is so little and understands so much, and it just breaks my heart to hear that he sees these things and knows that there is something wrong and that we aren't able to fix it. But hopefully we'll be able to very very soon!

So that is about it. The day was long and emotionally draining but all is good. And as always his strength and courage amazed me!!!

I have a ton of homework to do so I better get off of here but I didn't want to leave everyone hanging. Hope you are all doing well, I miss talking to all my friends.

No School Today!

Donavynn didn't seem to notice that he was supposed to have school today but due to the weather it was canceled. We got a bit of an ice storm, apparently it was pretty bad because they closed my college for the first time in 10 years! But we stayed in so we aren't really sure what it looks like out there. The kids have been doing crafts and playing all day. Donavynn has been practicing his scissor skills and is getting much better. They did a developmental check on all the kids in his school and we just got the results back the other day, but I forgot to mention it. Everything was on a scale of 1-10 and his language was a 10 - big surprise. :) His concepts were a 9 - simply because on of the questions she asked was "What do you do when you go in a dark room" He always asks me to turn on the light but for some reason his response to her was to play. lol And the other question was what do you do if you break something that belongs to someone else - well he also knows this one, because he'll always tell you if he broke something or spilled something etc. But he just looked at her and said with a big grin "Break Stuff!" His motor was behind - which we knew - for that he scored a 3, this is related directly to the infection that he had in his brain the summer after his diagnosis. So we aren't overly concerned. That will all come with time. And we can see improvements with him everyday. For example when he was screened he wouldn't jump, he still can't jump like Derek but he is getting both feet off of the floor at once. So it will all come w/ time. His appetite was a little bit better today. And his energy level has been off the charts! I wish I could bottle it! lol I guess that those are the only updates for now. Gotta get some housework done. Have a great one!

Donavynn Went Back to School Today!!!

Donavynn seems to still be feeling well. We are hoping that the bug that is going through the house will skip him all together or that it tried to make it's way in when he was on the meds and they kicked it's butt! He was able to return to school today! And he was really happy about that. He got to play with his friends and his teacher again and he has been in the best mood since then. His appetite still isn't too great, it seems to come and go. But his energy is great!

Donavynn has clinic on Monday - which is also the anniversary of his dx - 2 years. So please say some prayers for Donavynn and a few for me. I worry every time we get close to the anniversary! He is our fighter, and he is so strong, but that is a fear that will never go away. I'm sure that maybe someday I'll move past it but it doesn't look like it will be this year. Some of the other families are so much stronger than me. The date comes and goes and doesn't bother them in the least. But when it comes around for me, I turn into a paranoid neurotic. Oh well, healing and strength comes w/ time.

Well there is a lot of school work I need to do, so I better get to it. Have a great week!

Family Update

Donavynn seems to be back to his old self. His appetite has picked up thankfully, the whole week he was on the Rocefin he didn't eat much at all. Currently he is the healthiest one in the family! The rest of us are fighting off some sort of a stomach bug, and Daddy is having some flu like symptoms - we are hoping that it isn't the flu! And likely it isn't... because we've all experienced similar symptoms recently and it turned out to be something else. Donavynn is happy that he will be able to go back to school this week. He was so sad that he had to miss his Valentine's Day Party. :(

I deaccessed him Thursday night, Daddy came home from work for a few minutes to hold his hand because it really hurts him to take the tape off. But after we got the tape off it went very smoothly. I'm glad that I was able to do it for him, that I was able to give him the IV meds and deaccess him and save him from having strangers messing with him even more. He is truly amazing! His bravery and strength is an inspiration to us all.

Some added info on why I created the blogspot - I can't be certain because I didn't try it but I am hoping that if there are any future hospital stays that I can still access this site to give updates and there won't be the problems that we had w/ myspace during this last stay. So you may want to bookmark this page if you like to keep updated on Donavynn and his progress. Because if there are any further stays in the hospital I'll probably only have time to post a bulletin before heading out the door and from then on you'll have to check here. If God forbid I can't access this site either, I'll still have to have my mother post the updates for me but hopefully this site will resolve that problem. :)

I guess that is all for now! Post again soon!

1/5 -1/12

Saturday, January 12, 2008 Donavynn’s Accident Current mood: excited Category: Blogging Just a quick update. Yesterday Donavynn fell and hit just below his bottom lip on our glider rocker. I picked him up and my first thought was "Wow that bruised fast!" Then I saw blood gushing from his mouth so I called my mom, because I wasn't sure if there was anything that they could do for a wound in the mouth. At that time I pulled his lip down and realized that that wasn't a bruise on the outside he actually bit through it! Long story short we went to the pediatricians office and she said that he did bite through but it was worse on the in side and only a pit point on the outside so they couldn't stitch it because mouth wounds heal quickly. So she gave me a perscription for axocicillin to help prevent an infection. The good thing was that his pediatricians office just recently got a new nurse practitioner and she used to work with cancer kids, so she knew everything about the meds he is on and everything and I didn't have to explain everything like I do with everyone else! It was awesome and she was so sweet! So anyway, Donavynn is just fine, he stopped crying when I gave him a wet washcloth. He hasn't been complaining of any pain so that is good. That is about all for now. Oh yeah, Donavynn is going to his friends birthday party today so if I have time I'll have pics up later and maybe even some videos. Have a great weekend!

Thursday, January 10, 2008 My thoughts on love and life!!! Current mood: enlightened Category: Blogging Recently I was talking to a close friend of mine about things from the past and that got me thinking about how much changes with time. Then I heard Chris Daughtry's song "Over You" and I had an epiphany. Things have been hard for me ever since I was 16, ever since I had my daughter. As most of you know I married her father when I was 18 and as you can see that didn't work out. Looking back I remember the day that I told him that it was over – it was the easiest thing I had ever done! That was so sad in itself. Divorce should never be easy, but I felt as if this huge weight had been lifted off of my shoulders. It is funny how relationships change you. I didn't really believe that 100% before. From what I know we are both happy now with where we are, and though we have differences we remain friendly for the most part. You wonder when the healing occurs. It happens while you are living each day! We didn't have it easy from the start, we were both young and stupid and then we were young and stupid and expecting! What a life change there. I thought I loved him, and I honestly don't know as though I did, I don't think that he ever loved me either though. I can't say it was because we were young, because I had loved before him, a love so deep that it stays with me to this day. It has changed and it isn't the same way as before but it is still love. Who knows maybe I did love him, but cheating has a way of killing that. I didn't know as though I would ever get over that pain. But somewhere along the road I did, I don't know if it was before that day that I broke it off, or after. But it is gone. While it was here however, it changed me. Every person I've ever been with has changed me in some way. Friendships and relationships alter who you are and how you think about things. You may not realize it at the time, but looking back now, I see it!!! I remember how I was before. A sad, weak little girl. Needy, and dependent as much as I didn't want to believe it. I hated her! Fights would bring me to tears; the thought of being alone would scare the hell out of me! If that isn't weakness I don't know what is. But as I listened to that song – it felt like he was talking about my relationships, not just with my ex-husband but with my ex boyfriends as well. You think when you are growing up that you know everything. You think that you are seeing things clearly, but that isn't so. This all just started to sink in recently. I guess when you find that person that makes everything better, that person that you simply adore and WANT to be with, not need to be with, that person who puts you first and always thinks about your feelings, that person that loves you the same way that you love them – all the old hurts and old wounds begin to heal. The anger and bitterness begins to fade away. I am not the same person I was 10 years ago, I'm stronger, and I'm independent and though I don't want to live with out Dave – I know that I COULD! I know that the world doesn't end because things don't work out the way you hope that they will in life. This newspaper article got me through a lot of hard times, it guided me, and it told me what I needed to learn. And I finally feel as though I've learned it. After a while, you learn the subtle difference between holding a hand and chaining a soul. And you learn that love doesn't mean leaning, and company doesn't mean security. And you begin to learn that kisses aren't contracts and presents aren't promises. And you begin to accept your defeats with you head up and your eyes open with the grace of a woman, not the grief of a child. And you learn to build all your roads on today because tomorrow's ground is too uncertain for plans. And futures have a way of falling down in mid-flight. After a while, you learn that even the sunshine burns if you get too much. So you plant your own garden and decorate your own soul, Instead of waiting for someone to bring you flowers. And you learn that you really can endure... that you really are strong. And you really do have worth. And you learn and learn... With every goodbye you learn!!! By Veronica A. Shoffstall This sums it up! This sums up every thing I'm feeling. "You begin to accept your defeats with your head up and your eyes open with the grace of a woman, not the grief of a child!" There it is!!! True strength! It took me so long to build it, so long to understand all this. And though the marriage ended, and some of the relationships I had hurt me, I grew from them. I became who I am today. So for that I am grateful. For every person who broke my heart in some way, I am grateful. Because if it wasn't for all that I have endured I wouldn't appreciate my husband so much, and I don't know as though I would have held my life together like I have since Donavynn's diagnosis. Nothing will rock you to the core like hearing the words "I'm sorry but your child has cancer!" And that in itself changed me, being a young single mom helped me to grow and being the mother of a child with cancer helped me to grow as well. Everything we endure in life, every tear we cry molds us into who we become! Some find strength and determination in it while others fall apart. It is like the Garth Brooks song "Some of God's greatest gifts, are unanswered prayers!" That song got me through a lot of hard times as well. I would play that over and over and remind myself that God had a plan and it may not be the one that I wanted at that time. I hope that every woman gets to this point in their life, where they feel complete, happy and have closure for all the pain from the past. Whether from a failed marriage or a difficult relationship with a parent – healing must occur for you to be whole! Anger and bitterness must fade away for you to be the best person that you can be. Though every marriage has their times of trouble, you realize that a true marriage, one that is solid, and loving will grow from the disagreements and that they won't result in an affair. Trust – after being hurt so much you feel that you can never trust again, but somehow you do. Somehow you realize that not everyone is like the one who cheated on you, not everyone will break your heart. That was probably the hardest lesson for me to learn, because after my divorce every guy I dated paid for his mistakes, whether they realized it or not. But once I met Dave – he broke down the walls and built up the trust!!! What an amazing man, to do that. To stand by me when I crumbled, to fight for me when I tried to push him away and to bear with me when the trust was still growing. Men are men and sometimes he pisses me off, but I can tell you that he is 1 in a million and there aren't many like him out there! I am so lucky that "God blessed the broken road" because it lead me straight to the one that I should be with. We need each other! Had any of my past relationships lasted and we were faced with Donavynn's illness, they would have crumbled then. None of them had that kind of staying power and understanding! So my point is, when you think that things will never be right in your life, just remember that God has a plan for you and all will work out in the end!!! Thanks for listening to my ramblings! lol "Over You" Now that its all said and done I cant believe you were the one To build me up and tear me down Like an old abandoned house What you said when you left Just left me cold and out of breath I felt as if I was in way to deep Guess I let you get the best of me (Chorus) Well I never saw it coming I should have started running A long, long time ago! And I never thought Id doubt you I'm better off without you More than you, more than you know I'm slowly getting closure I guess its really over I'm finally gettin better Now I'm picking up the pieces From spending all of these years Putting my heart back together Cause the day I thought I'd never get through I got over you!!! (End Chorus) You took a hammer to these walls Dragged the memories down the hall Packed your bags and walked away There was nothing I could say, And when you slammed the front door shut A lot of others opened up So did my eyes so I could see That you never were the best for meee (Chorus) Well I never saw it coming I should have started running A long, long time ago! And I never thought I'd doubt you I'm better off without you More than you, more than you know I'm slowly getting closure I guess it's really over I'm finally getting better Now I'm picking up the pieces From spending all of these years Putting my heart back together Cause the day I thought I'd never get through I got over you!!! (End Chorus) I never saw it coming I should have started running A long, long time ago And I never thought I'd doubt you I'm better off without you And I never saw it coming I should have started running I'm finally getting better Now I'm picking up the pieces From spending all of these years Putting my heart back together And I got over you!!! And I got over you!!! And I got over you!!! The day I thought I'd never get through I got over you.

Tuesday, January 08, 2008 Update and some videos! People have asked so here they are! :) Current mood: amused Category: Blogging I wanted to post an update, because I didn't think I would have time for another before classes start but I have a little time… actually I'm making a little time. I can feel my stress level rise with every day I get closer to going back to school. Especially after I logged in to my campus account and saw that I have an assignment due on the first day of all of my classes! Lol Welcome to a 4 year college I guess! But don't get me wrong, I am very very excited! This week has been very good! For many reasons. We've had a lot of great family together time, Donavynn's itchy's seem to be much better – almost gone entirely, I've gotten a lot done around the house to get organized for the upcoming semester, I've had some time to make a new video and record a couple of the kids (featured below) and just a few minutes ago – my favorite show Moonlight won a People's Choice Award! Cheyenne got her report card today and she did very well. A few of the subjects went down a couple of points but her overall average is an 80% so that is pretty good! And we are so proud of her. Donavynn went back to school today and he was thrilled! His teacher calls all the children her "friends" So when she sees them she says "Oh hi friends, I missed you so much!" Well now Donavynn has picked that up – I've been "friends" all day long! It is so cute! And then his best friend Jacob is having his birthday party this weekend, so Donavynn is looking forward to that. I am hoping to get a couple of videos and if I do I'll post them. Donavynn had a good night in his own bed the other night which made us happy but then last night we had a really bad thunderstorm (surrounding areas had a tornado or two) and he woke up scared. So he ended up back in with me last night. But we're hoping for a better night tonight. We'll see. Either way – when you look into his big blue eyes and see that beautiful smile how can you say no? I guess that is about it. I'm going to settle down and catch up on my shows before I hit the sack. I apologize Donavynn and Derek had to broadcast their bodily functions in these first two clips! Lol Donavynn : "Teach me, teach me!"

Team Donavynn Video!!! Current mood: artistic Category: Blogging

Sunday, January 06, 2008 Heaven and Hell and more... Category: Blogging I found these while searching the web tonight and they seemed to echo all that I felt and still feel about what we face everyday, about that initial shock. But though it hurts and it is hard, we are very blessed and thankful for so much. Donavynn's illness, though devestating and I wish every day that I could take his place, has helped us all to grow and appreciate life so much more. We never realize how much our kids can affect who we are and who we become! And I have been beyond blessed with the little angles that God has given me! Heaven and Hell by April Brenneman [Editor's Note: April Brenneman is the mother of five children, including 7 year old Josh, a Ewing's sarcoma survivor who lives with a tracheotomy, g-tube feeds for extra nutrition and daily thyroid medicine as a side-effect of the radiation he received.] I know what hell is like...and I've seen glimpses of heaven too... Hell is watching your child suffer terribly and NOT being able to do anything about it. Hell is hearing the words "round blue cell and sarcoma" in the same sentence with your 4 year old son's name. It's pale, skinny, baldheaded children with little energy trying to play in the waiting room of a pediatric oncology clinic. Hell is hearing all about the damaging side effects of chemotherapy and radiation, both long and short term, from the doctors and knowing you have no choice. It's wanting to pick your baby up and run...but where? To whom? It's not being able to watch that first dose of toxins being pumped into your baby's body. Hell is holding your screaming child down for needle pokes and IVs. It's fighting insurance companies for every penny and mixed up communication with hospital staff and children with feeding tubes and yellow plastic tubs for vomiting. It's crying for eight months straight and knowing your life and your child's life will never be the same. It's finishing treatment, and then grieving the damage done to your little boy's body, but being grateful he is alive. Hell is watching some of the other childhood cancer children around you die and being thankful it isn't your child...yet grieving the loss deeply...and feeling guilty... I've seen glimpses of heaven too... Heaven is the love and care poured out by neighbors, friends, strangers, the church and the community so much so it could never be repaid. Heaven is a kind shoulder to cry on, ears that are listening, hands that show up to grocery shop or clean the house or drop off a meal or drive your other children somewhere. Its people coming together creating fundraisers to help with medical costs and foundations created through loss that help pay the bills. Heaven is free family camps, doctors who cry when a child they've treated dies and nurses with a gentle touch. It's that special childlife worker who goes out of her way to help your son make a Spider Man costume. It's the smile on your son's face when he's given a toy even though he's too sick to play with it. It's the chemo pals and the art therapists and all the children and their families who show up for the "end of chemo" party! Heaven is the people who encourage your child to dream big, and then actually make that dream come true! Heaven is the love that is shown to a suffering child and his family over and over again, day after day, week after week, month after month and year after year... Copyright © 2007 April Brenneman So, what does it feel like to have a child diagnosed with cancer? by Jennifer Weir [Editor's Note: Jennifer is the mother of three children: 15-year-old Michelle, 9-year-old Laura, and 6-year-old Kevin. Before having children, she worked in securities brokerage as a compliance officer and operations manager. She was becoming certified to teach high school Biology, Anatomy, and Physiology in September 2003 when Kevin was diagnosed with Ewing's sarcoma.] So, what does it feel like to have a child diagnosed with cancer? A question, I thought several years ago, that had an unimaginable answer. In 2003, our very active 4-year-old boy began limping, having some pain in his right leg and hip, was feverish, and acting lethargic and unwell. The pediatrician immediately suspected a bone infection, osteomyelitis, and had our son promptly admitted to our local hospital and referred to an orthopedic specialist. After 4 days in the hospital on IV antibiotics, we returned home with home health care and continued his IV antibiotics there. I literally was shaking after our return home, and commented to my husband, "how do the parents whose kids have cancer do it?" I knew a bone infection could be serious, but its treatment only lasts a month, then it was back to normal life. Or would it be? Five months after our son's treatment for osteomyelitis, subsequent misdiagnoses, and requests for referrals to other doctors, Kevin's pain was becoming increasingly unbearable. We finally headed to Texas Children's Hospital in Houston to see a pediatric rheumatologist. At that point, the doctors believed Kevin had developed a rheumatic/rheumatoid condition. It was there where we finally learned that there was no infection, there was no rheumatic condition, but there was, in fact, a very large mass that literally engulfed and burst through Kevin's right pelvic bone. The radiologist and physician thought it could be a malignant tumor. What? Had we heard correctly? From reading about juvenile rheumatoid arthritis, we thought we'd be looking at long-term aspirin therapy. But, cancer? No, that couldn't be it. The pediatric rheumatologist was explaining to us that it was probably Ewing's Sarcoma, and that treatment usually involves some sort of amputation, but that you couldn't amputate a pelvis. What? She also was explaining that since it had been 5 ½ months, the cancer may have already spread across his abdominal wall and possibly into his lungs. What again? The senses shut down. We were numb. Kevin had fallen asleep. David and I were lost in a fog. We had enough sense to ask the doctor whether we should stay in Houston for treatment. Would we be all right closer to home? Where should we go? What should we do? The doctor answered those questions quite well. She said we should go back home and be with our other two children. There is a fine institution in Dallas, Children's Medical Center, affiliated with a major medical school, UT Southwestern Medical School – a necessity for childhood cancer treatment. Kevin needed to be treated by a multi-disciplinary team. The rheumatologist called Kevin's pediatrician while we were still in the office. She told the pediatrician what tests were necessary to confirm Kevin's diagnosis, and sent us on our way. She gave us her card, and sadly told us that she wished this were rheumatoid arthritis, because she'd be able to help us then. She told us to pray for an insidious infection, which was an unlikely alternate diagnosis. What again? Pray for an insidious infection? The drive back to Dallas was another numbing experience. We needed to call the grandparents, but did not know what to tell them. It was all too much to comprehend. We couldn't comfortably talk about what lay ahead with Kevin sitting right behind us in his booster seat. We received a call from the pediatrician in Plano, who let us know that Kevin's MRI had been scheduled, then we would head straight to Children's for further testing. Our heads pounded. It was still too much to take in. During the 24-hour period that had Kevin being sedated for an MRI, blood work, a CT scan, x-rays, and other testing, we had never met so many doctors. First, there was the orthopedic surgery group who said they wouldn't even touch this – they did not handle bone tumors. An orthopedic oncology surgeon would be best at performing the biopsy without disrupting the surrounding tissues. Next, was an infectious disease specialist. She came in and said she did not believe, at all, that this was an infection. Our hearts sank. Finally, the pediatric oncology group came in. They did think, most likely, that this was a malignant tumor. They believed that the tumor was "inoperable" and that Kevin would require a year of treatment – chemotherapy and radiation. A year of treatment, OK, then after that everything would be fine. Sleep becomes a distant memory when you hear the words … "inoperable", "needs to be performed by an orthopedic oncology surgeon" … and these words are being uttered about your child. After the biopsy, we were told by the surgeon that this was a high-grade malignancy, but he didn't know what kind of cancer, yet. We would have to wait about a week for the pathology report to be completed. In the meantime, we were to sign more consents, allowing an oncologist to perform a bone marrow biopsy and allowing another surgeon to place a port-a-cath, a central line through which Kevin could receive his chemotherapy, blood transfusions, etc. More fog, more confusion, many tears flowing. It was obvious to the grandparents when we emerged from the consultation room what we had been told. Phone calls needed to be made; arrangements needed to be made. How could we tell our daughters, Michelle, a 12-year-old, and Laura, an 8-year-old, that their little brother had cancer? How could we tell anybody? We told the girls, without hesitancy, that their brother had cancer. Michelle wept, and Laura sobbed. We asked one of the senior pediatric oncologists to help us explain all of this to both of the girls. She was wonderful and reassured the girls that they did nothing to cause their brother's cancer, nor would they "catch" cancer themselves. She asked if they fought with their brother. When they finally admitted "yes", she wanted to know if they would continue to fight with him, now that he has cancer. Laura responded with "Oh, no." Then the doctor said, "Oh yes, you will. You should continue to treat Kevin as you always have – after all, you don't want your little brother becoming a spoiled brat, do you?!" They laughed, we were relieved, and I will never forget that conversation. This experience shakes you to the core. What I had always believed, what had been a rock in my life when things like jobs and relationships weren't going as well as I'd hoped, has been, "well, at least I have three healthy children." Those words no longer rang true. After the biopsy, we accompanied our son on his stretcher down a hallway through a set of double doors, under a sign proclaiming, "The Center for Cancer and Blood Disorders." What was this surreal world we were now about to become a part of? How does this happen to a 5-year-old child? Why couldn't this have been one of us? What did we do to our little boy that made him so vulnerable? Was it something during pregnancy? Should I have taken those hormones to sustain my pregnancy with Kevin? Was Kevin exposed to something toxic or power lines or something else that caused this? WHY? You soon learn that there are no easy answers to childhood cancer. Very strange things become routine. In that Center for Cancer and Blood Disorders, we saw bald children, constantly tethered to IV poles. Some looked radiant and happy, while others looked ill and miserable. Our son would become one of these children. People have asked, "how do you stay so strong?" I don't. I do what I have to do each day to help our family get through this crisis. I could have curled up in a ball, lying in a corner, but how would that help Kevin? How would that help our girls? So, we went on, many times on automatic pilot, with adrenalin being the force that got us through. After the type of cancer was confirmed, Ewing's Sarcoma, we met with the oncologist who specializes in bone tumors. He explained the course of treatment, the five chemotherapy drugs that would enter our son's system over a year's time. He would be admitted to the hospital for each round of chemotherapy. Also, quite often, he would be admitted in between rounds of chemo because of fever and low white blood cell counts and would require intravenous antibiotics to control potentially life-threatening infections. The "local control" treatment decision would have to be made – surgery or radiation – and neither were good options in Kevin's case. We were told of certain disability. We learned the potential side effects of the chemotherapy and the odds of Kevin becoming a victim to each one. Surely, Kevin won't have any of those side effects. What were we going to have to do to our child to give him a chance of surviving this cancer? What else could we do? The year of treatment had its many ups and downs. It is truly a nasty roller coaster ride for which we never bought a ticket. The doctors, nurses and staff were wonderful throughout. I have no idea how they do what they do, but they are expert at explaining things, extremely compassionate, and very concerned about these children. I am still in awe of them – doing what they do, and somehow managing smiles on their faces, while children still lose their battles. Guilt becomes a constant feeling. I'm spending so much time with Kevin, but so little time with the Michelle and Laura. My husband and I rarely see each other – one is at the hospital with Kevin and the other at home with our daughters. It has to be that way. There has to be some sense of normalcy and routine for the girls. They must go to school and continue with their activities, even though "normal life" has virtually halted for their younger sibling. Some of all of this is a blessing. Hugs are so much sweeter, time with the children is so much more precious, and simple things become triumphs. Our son had major pelvic surgery in January, 2004, to remove the diseased bone, tumor, and surrounding tissue. He was to be non-weight bearing on his right leg for a period of 6 months, still going through chemotherapy. Walking once again was a HUGE triumph. The physical therapist was working with Kevin in the hallways of the oncology clinic. Staff members happily watched, and a few had tears in their eyes. At one point, it had been believed that Kevin may never walk again, but here he was — using crutches, tethered to his IV pole, and walking! It was glorious! We also learned of the kindness and generosity of others. People, both familiar and unfamiliar to us, helped our family in innumerable ways. We had meals delivered to our home, our house was cleaned once a week, laundry was done, the dog was walked, and the lawn was mowed. Our girls were being cared for, on many occasions, by good friends and neighbors. We had others raising money for us to help with our ever-increasing medical expenses. We were honored and humbled by everyone's kindness. That was a beautiful blessing pushing past all the misery. So, how does it feel? The emotions are raw and ever-changing. A milestone is passed and another hurdle lies ahead. Will we ever be comfortable again? Will we ever truly believe our son is cured? Kevin has been cancer-free since his treatment ended in September, 2004. He has, however, been diagnosed with several of those "side effects" we thought would never happen to our son. Most are rare, some were not even mentioned at first, but all are a reality now. Kevin has many orthopedic challenges that lie ahead. His right pelvic bone is not growing, so there will be more surgery in his future. Kevin has intermittent pain, walks/runs with a limp, and has a hard time keeping up with his peers in simple activities, such as a game of tag. He has experienced partial, permanent hearing loss, and wears a hearing aid at school. Just weeks after Kevin's cancer treatment was completed, he was diagnosed with cardiomyopathy ("heart muscle disease") brought on by one of the chemotherapy drugs. He is followed by a cardiologist, takes heart medication, and may require a heart transplant at some point. The hurdles keep presenting themselves, but Kevin crosses them and goes on. He keeps us going. Thank God for that. We are grateful, so grateful that our son is still with us. We are thankful for all the blessings bestowed upon us. We are hopeful that we will never hear the word "relapse". We are hopeful, too, that a cure will be found for childhood cancer … a real cure, with no strings attached, no potential long-term side effects, and nothing to worry about in the future. .

Letting him be little and stinky cheese! Current mood: amused Category: Blogging As many of you know people refer to the spoiling of children who are sick (cancer, CHD, etc) as "The stinky cheese factor" Dave has surely done that with Donavynn. When I put Donavynn to bed he'll give me some grief but ultimately give in and go to sleep. But he knows that if he wakes up after daddy has come home then he will get his way and get to sleep in with me. This isn't usually a problem, but over the last few months it has become one because Dave ends up on the couch every night. So we decided to crack down on it last night and since daddy has no back bone when it comes to Donavynn I stayed up to assist. He finally settled down and stopped crying but then he layed in there complaining, and that was what got me. I heard him in there saying "And Mommy said No, and Daddy said No, and no means no. I just want my mommy back, I just want my daddy back, I don't like it in here, I'm scared. I don't wanna sleep BLAH!" Yes, he actually said Blah! With that I had to laugh, but when he said I just want my mommy and daddy back, I broke! He knows what buttons to push for sure because at that moment I started thinking about that song "Let them be little" And I had to go in and talk to him and we ended up giving in as long as he promised to make room for daddy. It was a long uncomfortable night for sure, but my heart didn't hurt so I'm ok with that. The funny thing is he usually sleeps in Daves spot, and he always says that if he lays on the other side of me so I'm in the middle that he is laying "back stage" I don't know where he got that from but it cracks me up! So I cracked and gave in and though he may not believe me I told him "You aren't coming in to sleep with mommy and daddy because you screamed and cried, we are letting you come in because you calmed down." I don't mind giving in sometimes but I don't want him to think he can through his ass and get what he wants. He probably still thinks he can but whatever. His little voice just got me! lol I guess I'm as big a sucker as daddy! But they are only little for so long and it goes so fast so I say - be uncomfortable, give up a few hours of sleep, and let them sleep in the middle because before you know it they'll be teenagers and won't want anything to do with you! And I figure if he only has the stinky cheese when it comes to him sleeping in with us then we have done pretty damn good! I just wanted to share his cute little ramblings with you! "I don't wanna go to sleep - BLAH!!!" lmao! Currently watching : SpongeBob SquarePants - Season 4, Vol. 1 Release date: 12 September, 2006

Saturday, January 05, 2008 After that one, this is a perfect one to post! Current mood: bitchy Written by a former child A message every adult should read, because children are watching you and doing as you do, not as you say. When you thought I wasn't looking, I saw you hang my first painting on the refrigerator, and I immediately wanted to paint another one. When you thought I wasn't looking I saw you feed a stray cat, and I learned that it was good to be kind to animals. When you thought I wasn't looking, I saw you make my favorite cake for me and I learned that the little things can be the special things in life. When you thought I wasn't looking I heard you say a prayer, and I knew there is a God I could always talk to and I learned to trust in God. When you thought I wasn't looking, I saw you make a meal and take it to a friend who was sick, and I learned that we all have to help take care of each other. When you thought I wasn't looking, I saw you give of your time and money to help people who had nothing and I learned that those who have something should give to those who don't. When you thought I wasn't looking, I saw you take care of our house and everyone in it and I learned we have to take care of what we are given. When you thought I wasn't looking, I saw how you handled your responsibilities, even when you didn't feel good and I learned that I would have to be responsible when I grow up. When you thought I wasn't looking, I saw tears come from your eyes and I learned that sometimes thigns hurt, but it's all right to cry. When you thought I wasn't looking, I saw that you cared and I wanted to be everything that I could be. When you thought I wasn't looking, I learned most of life's lessons that I need to know to be a good and productive person when I grow up. When you thought I wasn't looking, I looked at you and wanted to say, "Thanks for all the things I saw when you thought I wasn't looking." LITTLE EYES SEE A LOT Each of us (parent, grandparent, aunt, uncle, teacher or friend) influence the life of a child. How will you touch the life of someone today? Just by sending this to someone else, you will probably make them at least think about their influence on others. .. nice_bully -->..>..>

Updates and info

As most of you know, I usually blog on MySpace and had a freewebs page for Donavynn before - that I stopped posting on because I just didn't have the time to post on both. I started this blog not knowing if I'll have the time and energy to keep up with it either but I will do my best. School has me very busy and I haven't been able to blog as much as I would like. So here are a few of the recent posts from MySpace...

Tuesday, February 12, 2008 Hang it on the Cross Current mood: tired Category: Blogging HANG IT ON THE CROSS If you have a secret sorrow, A burden or a loss, An aching need for healing... Hang it on the cross. If worry steals your sleep, And makes you turn and toss If your heart is feeling heavy... Hang it on the cross Every obstacle to faith, Or doubt you come across, Every prayer unanswered..... Hang it on the cross For Christ has borne our brokeness And dearly paid the cost To turn our trials to triumph... Hanging on the cross. Anonymous I saw this at my daughters school and thought that I would share it. This really touched my heart. Especially with all that has been going on for the last 2 years. And I know that many of my friends need to read this as well. I have some of the worlds best friends and I don't know what I would do without them. I see us all going through every day facing our own problems, bumps in the road, fears and tears, and just praying for everyone to get out of it all safely. No matter what it is that you are dealing with, know that you, my friends, the ones that have been with us through the ups and downs are always in my heart and I pray that the problems you face will resolve quickly and easily and that you will be spared anymore pain. Somedays I know that we all feel like we are tired of being tested, like it should be someone elses turn and that we can't possbily bear anymore... I know that I have had many days like that. But it is in those times when we learn who are true friends are, and we learn that we can survive it, even when we feel like we truly can't bear to cry another tear. So many of you inspire me with your strength and courage! And I don't know what I would do with out you. Especially when we hit times like last week - when so much was up in the air and we didn't know what type of bacterial infection he had, how he would handle the meds, if they would work, when we would be home etc. I hated being away from MySpace because it was then that I needed my friends, I needed that support. But I know that we had it, I knew when my mom sent me some of the messages and I knew when I got home and finally read the rest of them. I just wanted to let you all know that Donavynn is doing very well and the huber needle comes out Thursday night! We can't wait! I hate having it in at home, it makes me so nervous! Incase any of you were wondering, I have decided to deaccess him myself. I know that I can do it and it will be good for me and him. He'll be happy that he won't have anyone else touching and hurting him and I will have a hands on experience, but I do feel better because I have done this before w/ the supervision of a home health nurse, so that does make it a little easier! :) I guess that is all for now... unless you want to hear about my day, if so keep reading, if not you can close the window now. :) Today was our MONA meeting (Missouri Nursing Association) - so we had nurse advocacy day in Jefferson City. I have to confess that I really was dreading it and was miserable on the whole drive there but I was pleasently surprised. The conference was pretty boring but then we got to walk up to the Capitol building which was pretty impressive. I was really sorry that I forgot my camera! But we got to sit in and listen to the House and the Senate debates - and I'm happy to say that the bill requesting that APN's be permitted to prescribe controlled substances (legal in 47 other states, we are of the last 3 to not have that approved already! Grrr!) was passed by the senate - so we still have to wait to see if everyone else passes it but so far so good. It was really amazing watching the goings on of politics... can't say that I'll ever want to do it, but I know that it is a possibilty because they strongly advise nurses to be advocates and lobby to our representatives about the things that are important to us. There were some interesting (not legitamate! lol) points made on the argument and I was livid when I heard Senator Cass say that if APN's are able to prescribe controlled substances that we would have more problems like with Heath Ledger - hello idiot, a DOCTOR prescribed those drugs! Not an APN!!! And whoever prescribed them was responsible for explaining to him that it wasn't safe to take more than one CNS depressant at a time. I just love to see nurses getting blamed for stuff they didn't even do! But one of the girls from our school got to speak to him after we left the building and we were rather impressed with her! She did a very good job! Explianing that physicians assistants have less schooling than APN's and they can prescribe controlled substances - but alot of the politicians view it as a turf war between doctors and nurses when in reality it is about helping the patient and if you have a patient that is in terrible pain but you have to wait for a doctor to prescribe the drug it could take hours - and that is hours that the patient is suffering - for example with cancer patients - they need those meds and having to wait for them is simply not acceptable! But anyway, sorry to rant - but it was a very good, educational day! So all is well here, things are getting back to normal. Hope to have time to chat with you all soon. And please know - all of my friends out there who I know are dealing with some things right now, I'm here for you and "Hang it on the Cross" Currently listening : Back Into Your System By Saliva Release date: 12 November, 2002

Friday, February 08, 2008

Home At Last!!! Current mood: relieved Category: Blogging Hello everyone! I just wanted to let everyone know that we are home! They set us up w/ the IV Rocefin and we were good to go. We haven't been home to long and we are just wiped out but I didn't want to leave everyone hanging. Having his port accessed at home will limit the things he can do - as I'm sure that you know 3 year old boys like to rough house! But he is so happy to be out of the hosptial room. Yesterday was a really nice day. They had the Children's Mercy Pet Pals here so Donavynn got to go downstairs and meet 8 different dogs! He was in heaven! But he was sad when he realized that we weren't taking one of them home w/ us! Lol They were all so well behaved, if you got our dogs around a group that size they would flip out! I wish the people that trained these dogs would come train ours! Lol I got a bunch of pictures and each one of the dogs has a "playing" card so he got one of those and a Polaroid with Sake (Sahkee) who gave him a high five! I got a pic of that w/ my camera as well. And he was also able to go into the playroom yesterday and he loved that! He made a little valentine door hanger and once he was Hep-Locked he ran all over the playroom and "cooked" me lots of stuff to eat. And somewhere in between all of that he actually got a good nap! Things were much better since we got upstairs. No cranky nurses, very helpful, kind care assistants, Child Life Specialists etc. It is simply amazing the differences that you can see even between floors in a hospital. I can't say that they were all bad because the nurse we had the night we arrived was great but that was the only good one we saw! Lol So that is about it. I'm going to go and try to upload the pictures of the dogs!

Thursday, February 07, 2008 Update on Donavynn Just a quick update. I'll update again w/ more when we get home TOMORROW! We are being discharged tomorrow w/ once a day IV rocefin. They are having them come teach me how to do it and I'll do it at home and then when he is done I will deaccess him if I'm comfortable with it. If not I can take him to Bothwell to do it. He is still doing very good. He was in the playroom for quite awhile this morning and all is well. Gonna get going just wanted to let all know that things are looking good!!!

Wednesday, February 06, 2008 Donavynn Update Ok here is a brief update for everyone. We still don't know much else. But we are finally on the floor! YEAH!!! I never thought I would be so happy to see this floor. So good to be out of prison! For those of you who I talk to send me a myspace instant message – I am still able to use the myspace chat thing. And I will give you the room number and all if you would like to call. The day wasn't a total piss off. Donavynn got in a really good nap and Scott – his PCS artist stopped by for awhile. I'm sending the pics to my mom so she'll post them when she has time. They colored together and Donavynn just thinks he is so funny! It was really nice. Dr. Shore said that either way he needs 10 days of IV antibiotics. So we aren't sure yet if we will be here for the full 10 days or if they will be able to set us up w/ home health so that we can do it at home because he is asymptomatic. He is doing great. It is so nice to see him smiling and feeling good inspite of all of this. I'm losing my mind not being able to talk w/ everyone and post the blogs myself. My mom has emailed me a lot of the messages that were sent and blog comments so I have read a lot of them and I thank you, I just wish that I could respond! GRRRRRR! Either way thanks for all the prayers! Karen, I'm not 100% certain on the question you asked about the bacteria that he apparently has. I know that it isn't a respiratory thing. If I remember correctly, don't quote me it has been a long time since I took micro but I believe that it can be normal flora (it is common to live on your body, and is kept in check by other organisms, unless it gets into your blood then it can be a problem) I think it can also be a cause of ear infections – if that is the case then we may know where it has come from because the doctor at our local ER told us last night that the right ear does look infected. Which I thought it did Sunday night but the idiot doctor that was there Monday morning said no, so I'm glad we got a second opinion. A lot of this is probably very confusing, I'm all over the place trying to remember everything and I'm running on 3 hours of sleep so this can be difficult. So the fact that it is Gram + is very good. Gram – can be very very bad! So we are happy about this, and like I said can't be 100% but I'm pretty sure that it can be normal flora. As soon as I know what is going on as far as how long we are going to be here and any more test results etc I'll let you know. I better get going, a volunteer just came by with the book cart so Donavynn and I are going to read some stories before we go to bed. I'm so happy to be up here with the GOOD NURSES!!! Lol Thanks for the prayers, they are so appreciated. Ok so if anyone wants to send me an email since I can't check myspace you can contact me at smc37900@ucmo.edu I'm pretty sure that is the correct address. Or if you have myspace chat you can catch me there too when I'm at the pc. Sending love and thanks to all of our prayer warriors!!! Serena ~ Team Donavynn ~

Donavynn’s infection Donavynn's culture showed a Gram Positive streppneumonia. This is better than a Gram negative infection. If I don't have everything spelled correctly or have worded things wrong, just ask questions. because this is Serena's mom giving this update.

Donavynn hospital update Current mood: bitchy This is Serena's Mom: Here is the blog that she sent me to post. You can contact her on her myspace IM Hello everyone, I am sorry I am not able to view any of your messages because of the new retarded filtering system the hospital has installed. I am not allowed to access Myspace so I will be sending updates to my mom and she will be posting them for me, and any updates that we have she'll post when she has time. Ok so this hasn't been a good stay. I've never had a problem with Mercy, but they are just pissing me off this time. There wasn't a room available on the floor so they put him in the PICU. Which has a whole bunch of stupid rules, so bottom line is I was here 2 hours before Donavynn but wasn't allowed in the room until after he was here and settled. Then I get attitude from some jerk about the internet access, so I called my mom to tell her and I get more attitude about using the cell phone. I was up till 4 am, and they are seriously going to harass me. Anyway, sorry about that rant. I'm just so frustrated by everything. On the upside, Donavynn is doing well. We still have NO clue what is going on, or what the plan is. The good thing is that we should have a room on the floor sometime this afternoon. Thank God I can't wait to get off the PICU!!! He slept good, when he was able to. Has eaten two Go-Tarts this morning and is happy and content. I'm sure he hates being in the bed because he doesn't even act sick. We won't really know much more until his oncologist makes an appearance down here. So things are up in the air as to what the bacteria is and how long we are going to be here. Ok I just realized that I got way ahead of myself. Some of you may not know what is going on. Sorry I'm just so tired I'll try to explain. Donavynn had a fever so we went to the ER Monday. They drew cultures and sent us home. Last night they called to tell us that they popped positive for Gram negative and Gram positive cocci. This may mean nothing to you guys so I'll try to explain what we were told. Both of those are different types of bacteria that stain a certain way. They think that Gram positive may be a contaminate (something that contaminated the sample from his skin) because we all have gram positive bacteria living on us. We don't usually have gram negative so they want to investigate this further. If they hadn't called we never would have known because he was acting fine and I didn't think he felt warm. So I checked his temp and it was 100.9 so we went in and here we are. I will try to read and get back to all your messages as soon as we are released from prison! lol But I'll send my mom updates to post as often as possible. Oh just to give you an idea of what may be going on... the most common gram negative bacteria is E. Coli. We don't know what one he has but that is the most common, and it usually is caused by a urinary tract infection but his urine was clean so we are unsure. The good thing is that he is happy! And seems to be feeling well. Now Mommy just has to get her attitude in check before she bites someones head off. lol I'll send my mom pics as well to upload when she has time but I don't know how much she'll be able to do, so bear with us. Please continue to pray that all goes well and we are out of here soon!!! I can't take it anymore and poor Donavynn keeps saying "I just want to go home!" Since I can't log on myself and say anything I just wanted to thank Amy and Cheryl for everything last night. It means so much that you ladies checked in on us and thanks Amy for distracting me and keeping me awake on my trip up here! It was really great talking to you. Cheryl, I'll try to call you as soon as I can, but I have to try to escape the wardens stare! lmao Love you guys, thanks for the prayers. And thanks Cheryl for posting a prayer request last night! I don't know what I would do w/o all of our wonderful prayer warriors!!! Much Love to All, Serena ~ Team Donavynn ~ BTW feel free to bulletin this if you want to update anyone, I have received emails that I have received new friends requests and I'm assuming it is probably related to the bulletins so if we have new prayer warriors out there that need to be updated feel free to bulletin the blogs! Thanks again for everything!!!

Monday, January 28, 2008 Clinic Category: Blogging Just a quick update. Donavynn had clinic today and all went well. His ANC is 1600. It was shockingly a quick in and out visit. He only needed the Vincristine today, so we just had to sit around and wait for his labs to come back. His rash is gone on his head, face and feet still but the rest of him looks worse. They checked him over and are still pretty sure that it is medication related. And I am hoping that perhaps the steroids will help this month even though they didn't help last month. I am sorry for the short updates but there thankfully isn't much going on except the every day stuff. We are beyond busy w/ the kids, running all over for school and homework. There hasn't been much free time at all. But I do appreciate the messages from all of our good friends checking in on us. Donavynn's 1st night in his new bed went well, last night not so much - Daddy ended up in there and Donavynn in w/ me because Dave didn't want to fight w/ him when we had to be up at 5 am. So hopefully tonight will go better. Wish us luck! lol Sending love, hugs and prayers to all of our friends!!!

Saturday, January 26, 2008 Donavynn’s Big Day!!! Current mood: excited Category: Blogging Well it has been such a big day for Donavynn! We decided to get him a twin bed in hopes that he might sleep in his own room and even if he won't sleep in there alone there will be room for me to lay with him. So we got that all up - the before and after pics are uploading right now. It looks awesome! And he seems very happy with it. They are in the Donavynn's Big Boy Bed Album. Also Donavynn has been potty trained for over a year now but for the life of me we couldn't get him to go standing up and with him being so short he always needed help to get up on the potty. Well my mom some how miraclulously got him to go standing up with her so tonight he asked Daddy to help him go and Dave was finishing his sentance w/ me and when he turned around Donavynn was done! He climbed up on the stool, lifted the seat and pulled his pants down and went ALL by himself!!! We are so proud of him! He seems to grow and change so much everyday!!! I happened to run across one of his handprints we made - in February 05! I can't believe how tiny his hand was! I'm just in such an awesome mood after such a big day for him! Cheyenne helped me clean his room up and organize it while Dave gave him a bath and she did such a great job! So things are good here. Still crazy busy, but good! Please continue to pray for my friend Karen's husband Rich! He really needs them! Donavynn has clinic on Monday so I'll try to update after that. Gotta get going because as we were taking care of his room the rest of the house seemed to have experienced a tornado! lol Have a great night and a wonderful Sunday!!!

Tuesday, January 22, 2008 A Little Happy Dance! Current mood: exhausted Category: Blogging I'm hitting the sack soon but I received a little info today that lifted a huge weight off of my shoulders and I'm so relieved! My clinical instructor talked w/ the head of the nursing deptartment and they are going to come up with a project for me to do instead of attending the health fair on February 25th so I'll be able to spend most of the day w/ Donavynn. I still have assessment in the am but then the rest of the day will be w/ my little man, going to clinic and then something really fun to celebrate his health! I'm still working on moving past the pain and the way that day affects me, but I'll get there someday. For now I'm just trying to work through it this year. Healing comes w/ time as I mentioned in a previous blog. So if any one has any cute ideas of something we can do after clinic that doesn't cost a lot but is fun let me know. I'm sure I can do the normal stuff, but I want to do something special. Either way any time with my children is special time! Getting groggy - have a great week!

Monday, January 21, 2008 Quick update before begining the week. Category: Blogging Our time off has gone very nicely. Donavynn decided that after being away from me for Monday, Tuesday and Wednesday he didn't want to go to school on Thursday, so I let him stay home with me. We got a lot done, playing, cleaning, studying. It was a very productive weekend. We went to the mall on Saturday and as we were getting ready to leave Donavynn said, very excitedly "We're going shopping!" So I told him to tell Daddy that he needed some retail therapy. This scared the daylights out of him and he started walking away from me with this terrified look saying "No, No, No!!!" And then it clicked, all he heard was THERAPY! So I tried to explain to him that retail therapy meant shopping and that I didn't mean Chemotherapy but he still didn't get it. I didn't know whether to laugh or to cry. My poor baby, that word will never mean the same thing to him it seems. We also had a little "photoshoot" today because we needed a new picture for the project we did with the handprint. You can see them and the handprint in the January 2008 photo album. I head back to class tomorrow. And things are going really good so far. Donavynn has clinic on the 28th so I'll update after that at the latest.

Wednesday, January 16, 2008 Brief blog on the going’s on and some thoughts... Current mood: accomplished Category: Blogging I am so tired and I have so much to say but I don't know as though I will get it all out. But I will try to organize my thoughts enough to say most of it anyway. For starters - it has only been 3 days and I feel so out of the loop, I miss everyone! I still plan on reading the blogs that I always read but I don't know as though I will always have the time to comment like usual. I hope you understand. Thank you to all who have messaged me asking about my first day back and wishing me well. That means a lot. I get to all that but first I want to tell you all about Donavynn. His rash on his face, head and feet is gone! DOING THE HAPPY DANCE FOR THAT! BUT his body is worse, arms, legs, tummy and back! He looks awful. All those special creams don't seem to be doing anything, so my guess is that this is just something we are going to have to deal with for the next few months until things warm up again and the air isn't so dry. His lip has healed almost completely already and he has been feeling good. He misses me a lot though. He about broke my heart yesterday when I told him that today would be "jammie day" with Nana. He said "Awww, I wanted to have jammie day with you!" It is so nice to feel loved but so hard when I would absolutely love to be here and I have to be there. It breaks my heart. The good news is that I am off for the next 5 days. Thanks to Monday being a holiday and my awesome teacher combining what we were going to do in clinic on Friday with the stuff for today. So I should have plenty of time with the kids during that time. I know that they both will enjoy it. Cheyenne has been absolutely drained from the early mornings. It doesn't seem to matter how early she goes to bed, by the time the day is over she is wiped out. It feels good to be getting back on a routine of some sort. I always feel so lost when I am not in school. I enjoy the time with the kids but every now and then want something else to do. Ok so I will start working into the school thing now... One bad thing I learned was that we have a mandatory health fair that we have to attend on February 25th. As most of you know that is the anniversary of Donavynn's diagnosis. So that is a day we like to be together as a family. What makes it worse is that the way the calendar looks, I think his treatment day is going to fall on that day. Meaning I won't be able to be with him all day and my mom will have to take him to clinic with out me - I have never missed a clinic day, I am always there with him and I HATE for the 1st one to be on THAT day! I know I am being silly. But the nerves start to set in right now and don't get better until we get past that day. It is like this giant cloud looming over me. I worry non stop all the time but it seems even worse during these months. But I guess I am just going to have to suck it up and get through it. Perhaps I'll see if I can change the appointment day so I don't have to miss it. I don't know! Ok so school is good. I am so happy to finally be taking classes that are teaching me what I want to know - nursing stuff! Pharmacology is going to be really rough but thankfully I took Patho last semester so Pharm should be my hardest class. I'll keep my fingers crossed of that. And it looks that at least for the first month or so the way clinic days are going to fall, I should have a few extra days off a week here and there to try to get ahead and stay ahead. I have met some really nice classmates - and in nursing school, you have to make friends, because they are basically an addition to your family for the next 2 years. We are eachothers support system. For many of them this will be the hardest thing that they have ever done, and there was a time that it would have been the same for me. Not anymore! The good and sad thing is that so much of what Donavynn has endured and the meds he has been on etc has helped me to learn and remember so much! I'm glad that at least some of this will be easy because of that but wish so much that there could have been a different way for me to learn it. I hate the fact that he has had to endure so much! But I know that he is strong and that this battle is only making him stronger. It is just so sad sometimes. I guess that is about all for now. My mind is beginning to race again so I'm probably missing stuff. But anyway, if anyone has some words of wisdom to help me get through that day, I would greatly appreciate it. And also I wanted to tell you all that I so appreciate everything and miss you all terribly! And I hope to hear from all of you soon - especially Cheryl - I miss talking to you! I hope things are going ok, Karen - I hope that you will keep me posted on Rich, how are things? Amanda - Just call me! And Amy - I enjoyed catching up on some of your blogs today, and hope to be able to catch up with you a little more soon. - For those mentioned above and the others that I talk to you are all in my prayers! If you weren't mentioned or I haven't responed to an email yet, please be patient with me. It has been a complete madhouse for the last few days. Love to all!!! BTW check out the new default! Those are some of the pics from last weekend that a friend put together into a completely adorable siggy!!!

Sunday, January 13, 2008 Little Shoes!!! My friend Carisa posted this in her blog and it is so beautiful and so perfect that I had to share it with all of my friends!!! Little Shoes In the top drawer of her dresser is one pair of little shoes, And a pair of little booties from which her Mom can choose. Although she cannot walk just yet, out with her Mom she goes For strolls in different shades of pink From her head down to her toes. But soon the little newborn Has to a toddler grown; In patent-leather party shoes She's walking all alone. But someone's watching closely, as she takes each shaky stride. And though she may not notice it, Her Mom is at her side. The nursery's now a bedroom, The baby's crib is gone. The little girl is off to school With brand-new sneakers on. She skips onto the schoolyard With a step as light as air, While Mom, though smiling bravely, Feels at loose ends standing there. The little girl grows older, And with each passing year, Her first high-heels and cowgirl boots Eventually appear. And then, as if by magic, The little girl is grown. She wears the latest fashions, Bought with earnings of her own. Then one fine day she's walking With her father at her side, In shoes of fine white satin, for now she is a bride. I wonder where the time has gone, And wistfully recall, My little girl, in little shoes, So innocent and small. And now I am a Granny, And Daughter, you're a Mom. Your little newborn child is The sunshine of your home. The top drawer of thier dresser Is filled with little shoes, And many pairs of booties, From which you now can choose. Cherish each passing moment, The laughter and the tears, For days go by so swiftly, And gather soon to years. The little shoes they will outgrow Before you realize, They will blossom like a summer's rose, Before your very eyes. Be always there to walk with them, When up against the odds, Make sure they know that they can count On mother and on God. And though they'll spread their wings and fly, As all our daughters do, One day she'll wear a mother's shoes, And she'll come home to you.