More Good News!

Vision test today showed that her vision has actually improved since her last test! Kidney's are functioning perfectly! Everything is looking good! Lumbar tomorrow and then we get to go home for a week!! I can't wait! We had our appointment with the bone marrow people to discuss chemo today. For the most part it's everything we expected. The drugs will most likely make her nauseous and sick, and her blood counts will drop to zero. They apparently are very good at controlling the sickness once they get a handle on what effects her the most.  We are also doing a stem cell rescue that I'm really excited about! Before we leave the hospital she will receive her own healthy stem cells and a drug to help them multiply! :) For the most part chemo side effects are short term and go away as soon its over. There are a few possible side effects that aren't so great, however. One of the drugs can damage hearing and another can cause infertility. :( But just like everything else, we'll just stay positive, and I'm sue everything will work out perfectly!
Hayden is doing so good these days! Today she picked Olive Garden for dinner and a race track for her cars (for being such a good girl at all her appts)!! She does such a great job at the appointments, everyday, allll day. It's like a job, 9-5. But they do seem to go fast and waiting doesn't even phase us any more, we just come prepared! I can't believe the amount of new toys she's gotten lately! She loves getting new things now! She didn't used too! So silly! Her energy is starting to come back again, she started to get tired from radiation about 2 weeks ago. Getting the normal results from hearing and vision tests is great because radiation can mess with both of those things, among others...
We ran into Jaxon today, who is about 2 weeks out from his first round of chemo, he looked great!! He was doing really well and blood counts came back up today!! Great news for them and makes things seem a little brighter for us as well! :)

Wonderful News!

This week has been a little crazy! Surgery for the central line didn't go quite as smoothly as it could have, but everything worked out!! At first there was the hematoma, then fluid in her lungs, then her lung was collapsing, then it just fixed itself! That was scary! It was like the surgeon punctured her lung one second then didn't the next. I guess we'll never know!! Then Hayden broke out in a huge crazy rash! It was (and still isn't) very much fun, but it's finally getting under control! It was terrible for a few days, but now we know that she is allergic to the cleaner they use to prep you for surgery and that they used to clean her PICC line and would have used to clean her central line. Now we know what the problem was with the PICC, it wasn't the dressings, it was the cleaner! Goooood to know! I think for a min there I let my positive side get away from me. I have to remember to stay positive and just have faith. Send good feelings out into the universe and the universe will send good things back. Most importantly I need to remember not to worry because it's in gods hands! 

Saturday Hayden had her MRI. At first we were told there was something there and I was so worried. We were discharged from the hospital shortly after that. We decided to go to target to get a few new movies to just sit around the house. While we were there I saw the book The Secret, which I've kinda read before, so I thought it might make me feel a little better. We went home and I started reading it and started practicing my positive thinking!! I felt better instantly and sure enough we got the good news we were hoping for today! That the suspicious thing in the MRI was actually just scar tissue and that everything was going to be okay! Just like we knew it would be! All our positive thinking and faith in god prevailed yet again! As Im sure it will continue to do so time and time again! 

Hearing and heart tests also went well today! Everything is functioning and working perfectly! This is also wonderful news as radiation can do a number to your hearing! But Hayden's is just as was before! :) Her heart is healthy and strong! The echo was really neat. It's just an ultrasound of her heart but it was really cool. We could see the valves opening and closing and the 4 chambers. Cool stuff! Especially since I've dissected a heart before and knew what I was looking at! She has vision test tomorrow, followed by lumber puncture on wed. Vision I'm sure will be the same as last, which wasn't absolutely perfect but I'll take it! A little nerve damage is fine with me as long as we have our baby! Doesn't bother me that she walks into things all the time, lol. I have no doubts that the lumbar will be negative as it was last time. Everything is going smoothly and according to plan. Then we head home to Austin for a week to enjoy with family and friends! We are holding a little raffle benefit on Friday that I'm excited about! I'm also going to get those rubber bracelets made that say Team Hayden on one side and Roar Cancer on the other. Pretty excited about that! 

All this seems to go by so fast! Before we know it we'll be looking back at all this as just a memory! I always think that it will be just a bad memory but I don't know if thats really true. We are so lucky to be so close to Houston where they have the knowledge and tools to cure our baby! Everything happening here is good! The situation might not be what we all expected but that doesn't mean it has to be all bad! Hayden is amazing and strong and such a fighter! There have been times where I've said something like nothing is okay, and she'll be like mooooommmmm it issss!! She's only 3 but she gets it! She stays positive and happy all the time! She finds the good in everything and always find a reason to smile. In the big picture, it is okay! We're going to get through this and its all going to be worth it because its what is going to rid her of this terrible monster.

 I'm so thankful to have such an amazing little girl in my life! I thank god everyday that I get to see her smile and feel the joy she brings to everyone around her! I love her more than anything I've ever known! I was getting so scared that things weren't going to be okay. I was getting caught up on the what ifs... I hate what ifs. BUT I'm not going to anymore. I'm going to keep my thoughts happy and positive no matter what! Its easy to fall off tract, get discouraged and feel hopeless. Its easy yes, but not worth it. I know in my heart that she's going to beat this, so I don't need to waste one second of time or energy on worry or doubt. 

While you're saying prayers for Hayden, I also ask that you say one for Nicole, who was just diagnosed with AR/RT while we were home on our break. She's still in the hospital healing up from surgery. She'll do the same treatment plan as monkey. One for Carlie, who also in the same boat as Hayden and Nicole. Carlie and Hayden are the same schedule but are receiving a little different treatments because of the difference in their age. Jaylie, who is a little farther in her treatment plan and has just completed her first round of chemo. Jaxon, who is in the same boat as Jaylie. There are so many more of these little ones out there that are receiving radiation and chemo for brain tumors that could use all our prayers too. Each day we get closer to a cure, I hope that day comes sooner than later. It's reassuring to know that people dedicate their lives for this fight and work day in day out to find this cure! One day we'll have it, in the meantime we'll just focus on curing our babies one by one! 

Faith

I'm sitting here waiting to emitted For the night...the surgery to place her central line didn't go as smoothly as it could have. Not huge complications but she has bleeding St the site internally. (internal bleeding..no biggie) it's called a hemotoma, which basically is an internal bruise. I translate this as the surgeon was to rough with my baby but that's probably not the case. I once heard that the happiest people are those who've found someone to blame. Anyways, the line is in securely and is functioning properly so this is all good. We'll have another x-ray here shortly to view the status of the bleeding. I'm confident that everything is going to fine, but prayers never hurt. She already had two tubes hanging out of her chest, we don't need a drain too. So today isn't so awesome but we can focus on yesterday...
Yesterday was great! We took Hayden to Galveston! She looooves the beach and had a blast! I have a ton of pictures but since we're stuck here I'll have to post them later. We rented an umbrella, had our folding chairs, a piña colada and spent the afternoon jumping over waves and digging in the sand!! Now that Hayden has her central line swimming is out of the question as are baths. :( we can probably figure something out with baths because she was really good about keeping her Picc line out of the water, I'm sure she'll understand this on can't get wet either. It's just in a much harder place to cover and is much bigger. We'll see... I'm pretty crafty...i'll come up with something.
Getting emitted to the hospital is always discouraging but I have to remember to have faith. All things are possible through god. I found this scripture Luke 8:50 "don't be afraid; just believe, and she will be healed". I started crying the second I read it, I'm not really sure why. It's hard not to worry, but I know I can't. It really doesn't change anything. If you're worrying it means you dont have faith and if you don't have faith, well then you don't have anything. I have faith. I know god us with us, he's done so many amazing things so far and i know he'll continue to do so.

Today Hayden Got her foot and leg casted for her ankle brace. She picked a blue snake skin pattern with purple straps! Fashion diva. :) She has to wear the brace because she isn't bending her ankle when she walks, hopefully with the brace and PT she'll be bending it in no time! If I didn't tell you she wasn't bending her ankle you probably wouldn't notice, she's adjusted to it so much, which is good and bad. Good because she gets around fine and doesn't trip too much and bad because she's training her body to not use certain muscles. She has occupational therapy tomorrow, there might be some kind of wrist brace involved because there is still significant weakness in her wrist, arm and hand. She has been using it more lately but she definitely avoids it as much as possible.
She also has a vision test this week, hopefully there will be no changes but I can tell she has trouble seeing out of her left eye. She compensates for that so much that the dr didn't realize there was any problem until I told her. There is however significant damage to her optic nerve which may or may not end up effecting her vision. Radiation shouldn't have had an effect on her vision (because we were able to do the proton beam) but it could have. Another thing being tested is if radiation had any effect on her hearing. I haven't noticed any change, so I'm hoping everything is all clear with that.
There has been a few things going on lately that concern me. First she's been extra sleepy lately, which is a side effect of the radiation but usually during not after. This does happen however, and Dr. mural says it's okay. Some times a few weeks after radiation you can experience late effects of it. She was having a few bad days about a week ago that with the drowsiness really started to worry me. She was being really cranky and irritable, which she hadn't been since before surgery. Then to add to it she started not peeing regularly. For three days it was only once a day, but today has been three times! Thank goodness! I start to freak myself out that there is another tumor, maybe multiple... It is possible that something growing in her spine could cause her nerves to act funny and make her think she didn't have to go. And the irritability was a huge red flag for the initial tumor. Drowsiness for Hayden is completely usual because she never naps, so when she is tired enough to sleep duribg the day...it's a little scary. But they keep saying they believe it's fine. Even after I accuse them of not knowing anything, tell them my theories, and remind them what she has exactly. It's that not I'm crazy, it's that I've been told she was fine before when all the while there was an extremely aggressive life threatening tumor growing her brain. I'm bitter to say the least. I'm sure these things are all just side effects of subjecting her entire brain and spinal cord to radiation and coming off all the medications but you just can't help but to let your mind wonder.
Other than all that she's been doing really well. I'm so proud of her!
We have a little benefit coming up soon at Baker St Pub. I'm excited for all the gift cards being donated to raffle off! Uchiko has donated 2 $150 gift cards, Z Tejas 2 $50 gift cards,among gift cards from Olive Garden, Sushi Zushi, Baker St, etc... Lots of prizes to win!! I'm hoping for a huge turnout!! Spread the word!! :)Friday sept 2nd 7-9 pm at Baker St on S. Lamar.
It's nice that Hayden enjoys being at Houston home, it makes it a lot easier knowing we have a comfortable homey place to come back to after long days at the hospital.
We love everyone and thank you all for your support and most importantly your prayers!!!

Dear Hayden

This is something I started writing for Hayden while we were in the hospital and picked up again the other day...

Dear Hayden,

I want to keep a little journal of your experiences and recovery during this time in your life. First I want you to know that you are the most amazing little girl in the whole wide world! Mommy and Daddy love you more than you’ll ever know! You’re doing great and we are soo proud of you! Today is Friday the 20^th 2011 and its been a really great day! You’ve been moving and talking and drinking your chocolate milk for the first time in a few days (you really love your chocolate milk)! We ended up here because for the past few weeks you’ve had some really bad headaches and have thrown up and just haven’t been yourself. We took you to your pediatrician a few times but they didn’t suspect anything, so we just kinda watched it. You would complain of a headache but then get distracted by swimming or soccer, so we didn’t think much about it either. It started to get really bad the weekend of the 13^th. You actually just wanted to lay on the couch all day instead of playing and running around. On Sunday the 15th you threw up and we decided it was time to go to the ER. At the ER they gave you a CT scan and found a large mass in your brain. We were emitted into the hospital and scheduled for an mri the next day. You didn’t sleep very good and you were really mad that you couldn’t eat. They also had a lot of trouble with your ivs and that was really hard for all of us. I was really scared when you went back for your mri because they had to put you under, but you did really good! Woke up and drank like 5 glasses of apple juice. The results showed that it was very large and we were told that that was a good thing…since it was soo large it seemed as though it had been growing for a very long period of time and hadn’t caused you too many problems until now so they were very hopeful that is was benign. They scheduled surgery for wed the 18th, so you could have Tuesday to play and run around. Tuesday wasn’t really a great day for you. Your head really started to bother you along with the fact that you were sick of ivs, having medicine shoved down your throat, and just wanted to go home. Natasha, Eric and Chester (your bff since you guys were in our bellies) came to visit. You two were both in moods and didn’t really want to play. We tried to get some sleep that night but it didn’t work very well for any of us. We were scared for surgery in the morning. I know you knew what was going on too. You said you were scared and wanted to go home. You don’t know how much I want to take you home, right now and then.

Today is Aug. 19^th 2011, this is the first time I’m writing since the first MRI you had. It’s been about three months since we found out about your diagnoses. It seems like a million years ago and at the same only yesterday. That wed was one the scariest days of my life. The night before we decided to get you baptized, just in case god only listened or helped if you were and the terrible thought in the back of my mind… what if everything didn’t work out. The morning was awful, you were so sick and in so much pain. I rode in your bed with you down to surgery just holding you scared to let you go. I knew we needed to have the surgery but there is always a thought that at any time I would wake from this terrible nightmare and I would just be holding you in my arms in bed at home.  The morphine they were giving you wasn’t working anymore and your head hurt so bad we kept the lights off in the room, you were shaking and throwing up chocolate milk everywhere. I didn’t even know what to do, I yelled at them to fix it; you needed something for the pain. They gave you something that went up your nose and seemed almost instant. I was relieved but scared. Knowing how much pain you had to be in made everything worse. I just wanted you to be all better, I prayed and prayed that everything would go smoothly for surgery, that there were no complications, they got the whole thing, you wouldn’t have a stroke or experience any paralysis and you would have no more headaches. I prayed that the mass would be benign and we would just go home from there and pick back up where we left off. I also cried more than I ever thought was possible. (I do a lot better these days but I still have my moments). When they took you back they promised they would take the best care of you and that you wouldn’t remember leaving me. They gave me a pager, said the surgery would take about 4-6 hrs and they would call my cell every 1-1 ½ hrs to update us. The pager they said was for if they needed us and couldn’t get a hold of us through our cells (which don’t work in the hospital very well). They threw in something about how the pager doesn’t necessarily mean anything bad… About an hour into they called on my cell and said that you were doing great and everything was going smoothly; that they would call in another hour or so. Well an hour and 45 min went by… I was pacing, crying, and praying…thinking the worst. They said they would call in an hour and it had been way past an hour. Didn’t they know to not tell people that if they didn’t really plan on it? At that point the pager went off, my stomach dropped to the floor, I didn’t understand why they weren’t calling my phone. Suddenly “doesn’t necessarily mean anything bad” ran through my mind and we all starting running to OR. We ran in the doors and the nurses were smiling, I figured if they knew something was wrong they wouldn’t be smiling. There wasn’t anything wrong, just letting us know that everything was still going great and you were almost done. I was so relieved. I thought I was going to have a heart attack. I was so mad at them for paging me. Why didn’t they just call? Oh well, everything was fine. You came out of surgery and we were brought back to picu where you would stay for the next couple of days to monitor you closely. You looked beautiful, like a little doll. They saved so much of your hair; I was so surprised. On the side of your precious little head was a giant incision. It was hard to take it in.

The next week was hard. Your little eye swelled completely shut. You just slept, wouldn’t eat, speak, or look at us. There was paralysis on your left side, nothing moved.  Physical therapist came in and made you sit up. You didn’t want it at all. You cried and sat there helpless. It was horrible. A few days went by and your eye opened, your cheeks weren’t so red, and I finally got you to start drinking! You had a bite of turkey sandwich and one teddy gram! I was ecstatic. (This reminds me of the obsession you had during our stay at the hospital with the “lunch boxes” which consisted of a turkey sandwich, teddy grams, an apple and an apple juice, you seriously loved them). Anyways, things went on and you were starting to do better.

The day had come that we were to talk to the doctors about what they found. Some stupid nurse let it slip that were getting a visit from an oncologist. The new fear set in. Sure enough, Dr. Wells, oncologist walked in. When I think about the past few months or even my whole life I have to say the news I was given was the single handedly the worse thing I’d ever heard, read, saw, anything. The absolute worst day of my life. Not only was the mass not benign it was rare, scary, aggressive and the highest grade of cancer you could have. I was told on this day that you would angel have less than a 20% chance of survival. Maybe 2 years. They didn’t know anything about it. I honestly thought my life was over, I would never be happy again. A few min past after he left, we all said a few things, basically in shock. I just needed to be alone and took off down the hallway. I ran outside. I thought for sure my heart would explode that instant. Or that it would just give out. My lungs would collapse. But they didn’t. I collected myself and went back to face our family and the realization that my perfect, beautiful, healthy, smart, funny, amazing angel had cancer. Any that it wasn’t going to be okay. I felt hopeless.

And then we decided we didn’t have to be hopeless. Any chance is a chance. You were amazing. You could do anything; you could and would beat this monster. 

Houston

Back in Houston. So soon. It seems like just a few days ago we had 3 weeks to spend at home. :( It makes me sad that we are back and have to start treatments again. This week is especially scary for me because its the first MRI and lumbar puncture since radiation. I know in my heart that they will show no signs of cancer, but the possibility is always there. Waiting is the worst part. 

This week is going to be pretty hectic. She gets fitted for a ankle brace, has OT, surgery for a central line placement, chest, sinus, & bone scans, MRI, lumbar puncture, hearing & vision test, kidney test... just a million different tests a three year old shouldn't have to be taking. 

The hardest part about being in Houston is that it just reminds me that my baby is sick. I always knew that children got cancer, but it just didn't seem real. But it is. Its not just my baby that has cancer but so many more. Its just a terrible reality that we face in Houston. Anyways... Hayden is still doing really well. There are a few things that worry me, but the Dr's seem to think its all fine. (Not that I believe anything they say, ADC kinda ruined that for me... but I guess not all doctors are complete idiots). She had a blast on our break! Went to SeaWorld to feed the dolphins, went swimming, went to the circus, and just spent time at home without having to go to a Dr.s office everyday. Just being a normal kid. I know that this well be over soon, and we'll just pick back up where we left off and be "normal" again, but it seems like such a long hard road ahead. Again with the waiting. The worst part. Waiting for results, waiting for things to start (more like dreading) and mostly waiting for things to end! Thankfully time has seemed to have gone by pretty fast. These past few months have seemed like a blur. Brain surgery, radiation, and now chemo. Chemo just seems like the scariest part. I don't know why. I guess in the beginning the surgery was the scariest. Then as radiation was going that was. But something about chemo.. just scary. But, this too shall pass. She will get though this just like she has gotten though the rest of this mess, and this time next year I'll be facebooking about her first day of kindergarten! Gotta stay strong and positive. I like to remind myself that miracles happen everyday. And they do, I see everyday when smiles at me. Keep praying for her and all the other little ones having to fight this monster! 

~Rachael