So blessed!

In light of the resent holiday I'd like to write a blog about all the wonderful things I have to be thankful for! I meant to do this on Thanksgiving but time got away from me! Which btw I am beyond Thankful that Hayden was out of the hospital and home to celebrate with us. Not only was she home but running around playing and eating spaghetti (hehe) just days after her 3rd round of chemo.

On Saturday the 26th The Hugs for Hayden benefit took place and around 700 friends and family came together to support monkey and raise money and awareness for her!! It turned out to be an amazing event and the money raised was out of this world! There will never be words to express how much this means to us and how grateful we are! It was truly amazing and a once in a lifetime event! I'm extremely thankful for the love and support of our family and friends. There is no way we could do any of this with you! Our family is what keeps us going through this difficult time and gives us strength and support when we need it most! Only because of our family were we able to come to Houston for Hayden's treatment and the continued financial support from both family and friends helps to keep us comfortable in our Houston apartment while we are away from home. This is such a huge blessing! Knowing how much love surrounds us is the most amazing feeling in the world!!!

I'm so thankful that we were able to do Hayden's treatment here in Houston. The proton radiation beam has been proven to greatly reduce some the horrible side effects of radiation. We didn't have a choice on the radiation and knowing that we were able to protect more of Hayden's healthy cells, tissues and organs made it much easier to move forward with the radiation. We are aware that some side effects aren't avoidable but being to reduce that list is a god send. The other amazing thing Houston offers is the stem cell transplant. As we all know stem cell usage is a controversial issue and it isn't available everywhere. Before chemo started the drs harvested healthy stem cells from Hayden's blood and after each round they are giving back to her. This allows us to attack her cancer more aggressively. The doses and types chemo being used are extremely high and toxic and with out the stem cell rescue we wouldn't be able use this protocol.  It seems like a bad thing to use stronger more toxic doses but when you're dealing with this type of cancer you have to have to fight fire with fire. After each round her body is completely depleted of all unhealthy cells but also of all healthy cells. The transplant along with many  blood transfusions brings her white and red blood cells up to much better levels. With out the transplant her immune system would never recover enough to start another round of chemo! It's also the reason we are able to complete her chemo in 4 months instead of 6-12 months, in some cases even longer. I'm so thankful for Texas Children's Hospital, M.D. Anderson the Proton Radiation Center, St. Judes, and Dell Children's Hospital. I know these places are where miracles happen and because of them Hayden will be cured of her cancer and have a second chance at life. When we found out that Hayden had a brain tumor I was scared and thought we didn't have a chance, I thought I would never be happy again, I was hopeless. Because of these places we have hope and having hope can erase fears, put smiles on your face and change the way you think, feel and view the situation, your life and even the world. I'm so thankful for them and the hope they have given to us and countless other families facing this monster.

I'm so thankful for Hayden's spirit and strength. She amazes me everyday. She is such a special little girl and I'm so proud of her. I thank god everyday for giving her the strength to beat this and make it look easy! If she wasn't bald you wouldn't have a clue this was happening to her. She is always smiling and laughing and that is the best gift I could have during this. I was reading a blog where a friend of ours going through the same thing brought up her son's age and how thankful she was that he wasn't quite old enough to understand the severity of this disease and I couldn't agree more. Hayden knows that something isn't right but she doesn't have the fear of it that we have. I'm thankful that all she knows is to feel better to play and laugh and run and dance. She doesn't know this supposed to hold her back or make her sick and so it doesn't as much it could... We have been surrounded by many children during this battle and I see all of them fight with grace and spirit so I know it's not just Hayden but there is something special about her and I know she will never give up. She was given special gifts that prepared her for this. She was born ready to fight and beat this! She is beyond amazing, she is a miracle. I love her more than life itself and I'm so thankful for her. I'm so thankful that she is doing so well. I can hardly believe it! This road has been hard and trying but nothing like I thought it would be. Her strength carries us all.

I'm thankful for god because without him none of the above would be possible. In the last seven months I have seen more miracles than I thought possible. I have felt fear like one couldn't imagine but through his grace, love and guidance have felt faith, happiness, love, hope and comfort. he has shown me to live for today and count the blessings I see in front of me and to not fear tomorrow or what could be. What could be doesn't exist. God works out all things and nothing is to big for him. God is good all the time. All of these obstacles that have placed in front of Hayden have seemed impossible yet she keeps overcoming and exceeding them!!! We truly can do all things through him who gives us strength. I'm literally witnessing miracles every day in my life and all around me! He has already healed my baby which is the greatest blessing of all time but he hasn't stopped there. He keeps bringing us more and more blessings than one could even imagine. I have definitely renewed my faith through this and that is something to be thankful for!

I don't think I am actually done with my list but Hayden wants to play dinosaur train fishing and that is really important right now!! I will be back later! God bless!!! :)

Home!

After another long stay at the hospital, Hayden finally got to come home yesterday! She loves being at home, it's so cute to watch her, she was so happy to be back! She was greeted by a few new friends from Papa... Fish for her new tank from her bday! She loves them! She's doing really well and is even eating! She doesnt usually start eating for a few weeks after.
This round went much better than last time! Praise god! Even though we got stuck staying an extra week again! Chris was able to take off work and stay the whole time and his dad came down for some extra hands. We had something come up and I was unable to be at the hospital for a few days so we were thankful for the that! Our families are so amazing and we're so thankful for everything they do! Anyways, Her nausea wasn't even close to as bad as the second round and although she did get a line infection it was resolved fast and she didnt get a fever like last time! I pray that she doesn't get any more infections! We're so careful with her lines, I can't believe she has had 2 infections :( It would be wonderful if her last round went smooth like this one and we only had to stay the 6 days that it should be! We're scheduled to go in for our 4th round on Dec. 7th, so she'll be feeling good and on the recovery path (instead of the treatment path) for Christmas! I'm excited for the holidays and the new year, I have a feeling this will be our best year yet! :)
I'm so happy to be out of the hospital for thanksgiving! My family is coming down and we're cooking a big turkey day feast! This year more than any I have so many things to be thankful for! Hayden's health and how wonderful she's doing is the first thing on that list! I hope every one has a great thanksgiving! God bless!

Round 3

We came in to start round 3 on wed 11/9 only to find out Hayden had another infection :( while we were waiting for our room, Hayden spiked a fever so they did blood cultures. They came back positive, so they decided to hold off on chemo until we knew what it was and got it resolved. Thankfully the bacteria responded to antibiotics immediately and Thursday's culture came back negative as did today's! So we are on day 2 of negative cultures, they don't consider it resolved until 3 negatives. She has to recieve 10 days of antibiotics after the bacteria is cleared. So even though she's been getting antibiotics for 3 days it only counts as day 2 of the 10 days. But it works out nicely because the chemo and antibiotic days overlap, so it's not nearly as bad as last time. I think it will go much faster this time! Last time we had already been at the hospital for a few days and they added the 10 extra to the end, it was long!
We're going to celebrate monkeys bday tomorrow with my family at the hospital. We were going to wait til next weekend but with everything going on she probably won't feel too good then so we'll just bring the party here! Since we haven't started chemo yet she's feeling good, just spending her time in the play room and playing games! She's in great spirits and being her normal happy self! I'm gonna run out tonight and get decorations and balloons for tomorrow! I think she'll like that!
It's crazy that we are already on our 3rd round! We're almost done! We're praying this round is better than the last and I think it will be. We have her scheduled to receive 2 nausea meds alternating around the clock. This cocktail worked really well the first time and has worked well for some of our friends also. There is a little boy that had a horrible second round very similar to Hayden's but his 3rd was much better and 4th even better than the last!! We're hoping to follow that trend! Since the fever already broke and she's feeling good, infection is under control, and the drugs are scheduled around the clock, I really think this round will be much smoother than the last! Knowing we're getting so close to completion helps a little too :) like usual we're just focusing on staying positive and taking it one day at a time.
Please continue to pray for Hayden! Your prayers definitely help! Please pray this round goes smoothy and her nausea is controlled and she feels good. Pray that the chemo doesn't damage her hearing anymore than it has. Right now there is damage only to high pitch ranges that doesnt effect her normal range hearing and we really would love it to stay that way! Pray that she has no harmful side effects from all these treatments, especially no secondary cancers! Pray that she is free from her AT/RT cancer and it never comes back! She's schedued for her next MRI and lumbar puncture towards the end of Dec, I know that seems far away but keep them in your mind and pray for clear scans and negative punctures!! Thank you all for your continued prayers and support! We know they work because we see the results everyday!
We have two friends, Jaxon and Carli, who just finished their last rounds of chemo! We're so excited for them and their families!! Pray that their bodies recover quickly from the last round and they live long happy healthy cancer free lives! :) Our friend Nicole just finished her radiation and is headed home for a few weeks before starting chemo! Pray that they enjoy a nice break and chemo goes smoothly for them! Our friend Jaylie is in her 4th of 6 rounds of chemo and is doing great, pray that she continues to do so!
I try not to think about why this is happening to often but when I do I try to focus on the positives. This experience has definitely brought me closer to god and brought our families and friends together in such amazing ways! When I read updates about the benefit in Buffalo I'm just blown away by how everyone has come together for our baby! It's so special to us and we are so thankful to each and every person who has contributed items, times and prayers for Hayden and us! It has also opened my eyes to how large the world of childhood cancers is and how much more time, money, and research need to put into finding cures! I will definitely focus time and energy in the future to try to make this happen! And not that I didn't know before but I'm reminded everyday how special my baby is and how much I love her and how thankful I am to have her in my life!!
God Bless!!

Doing Good!

Well Hayden has recovered from this terrible round with flying colors! She's doing so well in fact we don't have a clinic visit until Monday! Thats just crazy! We normally go if not everyday, every other day at the least! So this is big news! This will be honest to god the longest we will have gone without stepping foot in TCH in 5 months! Her blood counts have recovered beautifully!  :) Looks like our next admission will be 11/9, seems so soon. Please pray this round is better than the last! Also pray that Hayden's hearing is protected from the chemo along with every other vital organ! She just had a lumbar puncture today, and she has done fine with it. No problems or pain. Pray that we continue to get negative results from these! (lumbar puncture is a spinal tap testing her cerebral spinal fluid for cancerous cells, the original tumor hadn't spread and we continue to pray that nothing pops up in future tests) There was some questionable spots (in the tumor bed~ we ARE confident it is just scar tissue) on Hayden's MRI before the second round and still not 100% sure that nothing has changed from then, but I've been assured that Dr. Murali has reviewed the slides and if there was something of concern we would have heard by now. No news is good news I guess... As always please please please pray that we continue to get clear scans for ever!!
We had a rough few weeks there but now we're back on track! We're looking forward to spending some time our family from Buffalo and relaxing for the next few days! :) Thank you for all your prayers and support!