We are so happy that Hayden didn't get any infections this round and that we got to come home so soon! She's doing really well and even eating! I still can't believe that this was her last round! We never have to do it again!! Her blood counts have dropped rapidly as we knew they would and she'll need platelets and blood on wed. We've gotten a good handle on when and how much nausea meds to give so she hasn't gotten sick at all! I think that helps with eating, which is wonderful! The more she eats the sooner we can get off tpn! They already took her off lipids so she only has one tube at night. :) so excited to start knocking these things off our lists! We can not wait to get her central line out! Things we need to happen before we can come home are: getting the cental line out, no need for tpn or nutritional supplements, for her to engraft (WBC come back up to 2K for at least 2 days), red blood counts, hemoglobin and platelets to come up and stay up on their own without need for transfusions, and MRI and lumbar puncture under her belt with the good results we expect from them! So I'm estimating 3 weeks... We shall see! The line will be the last thing to go so we need to stick her every day for blood work and other things.
Since Hayden immune system won't function fully for 4-6 months we decided it was best to find a temporary home for drake...we need everything to be clean and him going in and out carrying germs just isn't ideal. The amazing family that we met in Galveston that has already done so much for us has offered to take him in for 6 months! Can you believe it? They are such wonderful people and have taken a huge weight off our shoulders! We are so blessed to have met them! I know they are a little nervous with drake being so big but I think he will be a great temporary addition to their family..especially with 2 young boys! Just another thing to scratch off the list f to-dos before we can home!
She has an MRI on the 27th so please keep her in your prayers that the scans show no evidence of cancer and that the scarring/effects of chemo and radiation is minimal and if there that is CLEARLY just scarring or whatever.. This has been on going for Hayden and our friends... Suspicious spots on the brain or spine that we just can't be sure about. We are all confident that the spots in their scans are effects from radiation, surgery, and chemo but it would be a wonderful feeling for the drs to say that has been no change, the areas thought to be scarring are definitely that, and there is absolutely NO cancer! And that there never will be! Lumbar is on the 3rd, o far we've been lucky that she hasn't experienced any pain, bleeding or infections from the procedure so please pray it stays that wAy and of course that her csf is negative for cancer or atypical cells! I ask that you all please pray that there is no more damage to her hearing! I can't believe that we are finished with all her treatments ( minus one more dose of chemo in clinic) and now on the path to recovery. Please pray that that is exactly what happens! Complete recovery with as few of the horrible side effects as possible! :)
Please pray for our dear friend Carli...she is experiencing lots of pain and weakness from unknown sources and is dealing with a virus. She is finished with her treatments but is still in the hospital because of these issues. Please pray that they figure out what's happening and control it fast so they too can go home and focus on recovery! Our friend Jaxon has returned home, is doing great and loving it! Praise god! Nicole now has her new line placed and is preparing to start chemo right after Xmas, she is doing great recovering from surgery and radiation! Jaylie has one round left, she is also doing great! Please keep all our friends in your prayers! Pray for no infections, especially right now so that we can all be home to celebrate the holidays with our families! None of us want to be inpatient on Christmas!
I hope everyone has a wonderful Christmas! I actually got all my shopping done, can you believe it. :) just a few little things to grab! Santa got Hayden her barbie jeep and barbie dream house that she wanted... I'm sure all of you are as shocked as we are about the words barbie and Hayden being in the same sentence! :) we are so thankful to be at home this holiday... 7 months ago I wouldnt ave dreamt that things would be going so well right now, that Hayden would soon be done with this nightmare, that we would have a tree up and be making Christmas dinner, opening presents and celebrating not only Hayden's life, recovery and future health but also her smile and spirit that has never faltered! This year more than any I hope that we can all remember what this season is really about and look around to see the miracles in our everyday lives! Take some time out to think about how wonderful god is and how beautiful and precious our family friends and lives are! Merry Christmas everyone!!
Monday, December 19, 2011
Monday, December 12, 2011
Last round!!!
Here we are again for the last time!! So far no fevers, and that means no infections and 6 day stay (instead of 12)! Today went pretty well, for the most part she just slept all day. She did get sick a lot but after piling 3 nausea meds on top of each other and a really long nap she was ready to visit the play center! Didn't spend to much there but it makes me happy that she wanted to go! She took a few sips of water but nothing to eat. Not surprising!
We talked to the nutritionist today about how soon we can take her off Tony and lipids... Every night at home I have to hook her up to her "backpack", which is basically iv fluids/nutrients/fats that accounts for 45% of her daily nutrition. it runs for 12 hours so we sleep with her backpack and wires every night and wake up to the pumps beeping constantly or tangled in the wires. She usually has to get up a few tines to pee every night as well. And then in the morning when they are finished, we can't just unhook them and be done.. Gotta clean the hubs then flush the lines with saline and heparin.... such an ordeal, I CAN NOT wait to be done with it! So the nutritionist feels we can lower the percentage as soon as we leave, especially with the lipids and probably take her off it completely in about 2 weeks!!! Praise the lord!! She has started eating again around that time with the past 3 cycles so once she does we're done! Of course, she'll monitored closely so if she doesn't look good from a nutrional standpoint she can always be put back on. But once she starts eating she usually eats like a little piggie! I have to make her plates of spaghetti and mac and cheese or make runs to mcdonalds or tao bell five hundred times a day. I can't wait for her to have a normal appetite again. She can't eat food that has sat out at all or any left overs and she wants food but only takes a few bites then is done... So we have to throw it away! I can't make a big ol thing of spaghetti then reheat over the following days. Everything has to be fresh! Even the sauce, I have thrown away jars of spaghetti sauce, I at least have starting buying the little jars of sauce but still go through about 3-4 a day. Oh and single Mac and cheeses. I swear I've gained so much weight eating all her leftovers. She makes the strangest requests then takes a bite and is done! Needless to say, anything concerning her nutrition or appetite has kinda been a pain BUT we're soooooo close! :) making food for her a million times a day doesn't really bother me but I will be happy to not too...
We have 2 days of inpatient chemo left! Today was her last dose of the horrible cisplatin that s damaging her hearing. :( although it can linger and cause damage for up to a whole year... I feel so much relief that it's the last time she will ever have to take it! Cisplatin is nasty stuff, as are all the chemo drugs, but I have a personal vendetta against this one. I'm so angry that it has caused her to lose hearing, at the last test the damage had spread to normal ranges. Anything under 8k is normal ranges. She has significant damage at 8k,6k,4k and 2k. :( as of right I haven't noticed any changes in daily conversation so that is a little relieving. I am praying and praying the damage stops and she won't need hearing aids. With god all things are possible! But a healthy baby with hearing aids is much better than the alternative. It is just a horrible feeling to know what she has to sacrifice so that we could save her life. Hearing loss doesn't always happen but it can, so they aren't surprised. But come on, she is already 1 in 30 cases in the world of the damn disease on it's own, why does she also have to be the one that has the hearing loss. Grrrrr! Not that I would ever wish any of this on anyone else, I'm just saying... Watching the last few drops of that crap finish up was an amazing feeling. Knowing I never have to give her amifostine again also makes me very happy! It makes her so sick :( never again!! The cytoxan she has the next 2 days makes her pretty sick, but she usually does better on those days. After this she only has one dose of vincristin in clinic, it's not so bad, and then she will officially be finished with treatments! Brain surgery, radiation to her entire brain and spine, and finally high dose chemotherapy with stem cell rescue...done!!! 8 months we've spent away from home and torturing my baby and we are now so close to being finished! I can not wait to go home! As of today she has spent 48 nights in a hospital and pretty much every day of the past 7 months(minus the 6 week break and a few lucky days that her counts were great) in clinic. Sooo close!:) :) She has done so amazing through this whole thing, I'm so proud of her! She is soo excited to go home as well,she keeps talking about going back to Austin, seeing Drake and Sasha, riding the zilker train and even talked about going back to school!! I'm not sure how long it will take for things to get back to "normal" but I can not wait to start!!:)
Will write more later!
We talked to the nutritionist today about how soon we can take her off Tony and lipids... Every night at home I have to hook her up to her "backpack", which is basically iv fluids/nutrients/fats that accounts for 45% of her daily nutrition. it runs for 12 hours so we sleep with her backpack and wires every night and wake up to the pumps beeping constantly or tangled in the wires. She usually has to get up a few tines to pee every night as well. And then in the morning when they are finished, we can't just unhook them and be done.. Gotta clean the hubs then flush the lines with saline and heparin.... such an ordeal, I CAN NOT wait to be done with it! So the nutritionist feels we can lower the percentage as soon as we leave, especially with the lipids and probably take her off it completely in about 2 weeks!!! Praise the lord!! She has started eating again around that time with the past 3 cycles so once she does we're done! Of course, she'll monitored closely so if she doesn't look good from a nutrional standpoint she can always be put back on. But once she starts eating she usually eats like a little piggie! I have to make her plates of spaghetti and mac and cheese or make runs to mcdonalds or tao bell five hundred times a day. I can't wait for her to have a normal appetite again. She can't eat food that has sat out at all or any left overs and she wants food but only takes a few bites then is done... So we have to throw it away! I can't make a big ol thing of spaghetti then reheat over the following days. Everything has to be fresh! Even the sauce, I have thrown away jars of spaghetti sauce, I at least have starting buying the little jars of sauce but still go through about 3-4 a day. Oh and single Mac and cheeses. I swear I've gained so much weight eating all her leftovers. She makes the strangest requests then takes a bite and is done! Needless to say, anything concerning her nutrition or appetite has kinda been a pain BUT we're soooooo close! :) making food for her a million times a day doesn't really bother me but I will be happy to not too...
We have 2 days of inpatient chemo left! Today was her last dose of the horrible cisplatin that s damaging her hearing. :( although it can linger and cause damage for up to a whole year... I feel so much relief that it's the last time she will ever have to take it! Cisplatin is nasty stuff, as are all the chemo drugs, but I have a personal vendetta against this one. I'm so angry that it has caused her to lose hearing, at the last test the damage had spread to normal ranges. Anything under 8k is normal ranges. She has significant damage at 8k,6k,4k and 2k. :( as of right I haven't noticed any changes in daily conversation so that is a little relieving. I am praying and praying the damage stops and she won't need hearing aids. With god all things are possible! But a healthy baby with hearing aids is much better than the alternative. It is just a horrible feeling to know what she has to sacrifice so that we could save her life. Hearing loss doesn't always happen but it can, so they aren't surprised. But come on, she is already 1 in 30 cases in the world of the damn disease on it's own, why does she also have to be the one that has the hearing loss. Grrrrr! Not that I would ever wish any of this on anyone else, I'm just saying... Watching the last few drops of that crap finish up was an amazing feeling. Knowing I never have to give her amifostine again also makes me very happy! It makes her so sick :( never again!! The cytoxan she has the next 2 days makes her pretty sick, but she usually does better on those days. After this she only has one dose of vincristin in clinic, it's not so bad, and then she will officially be finished with treatments! Brain surgery, radiation to her entire brain and spine, and finally high dose chemotherapy with stem cell rescue...done!!! 8 months we've spent away from home and torturing my baby and we are now so close to being finished! I can not wait to go home! As of today she has spent 48 nights in a hospital and pretty much every day of the past 7 months(minus the 6 week break and a few lucky days that her counts were great) in clinic. Sooo close!:) :) She has done so amazing through this whole thing, I'm so proud of her! She is soo excited to go home as well,she keeps talking about going back to Austin, seeing Drake and Sasha, riding the zilker train and even talked about going back to school!! I'm not sure how long it will take for things to get back to "normal" but I can not wait to start!!:)
Will write more later!
Sunday, November 27, 2011
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!!! :)
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!!! :)
Sunday, November 20, 2011
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!
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!
Friday, November 11, 2011
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!!
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!!
Tuesday, November 1, 2011
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!
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!
Thursday, October 27, 2011
Update
We've been home since Monday and its been wonderful. 2 weeks in the hospital can really drain you! I'm definitely feeling drained lately. We've been sleeping much better but I still don't feel caught up. There is just too much going on! Today we got the "results" of her latest MRI. I say it like that because yesterday we got "results" that showed some changes but they didn't know what it was because they were just basing it off the radiologist's report. We were told it hadn't changed "that" much and Dr. Murali would look at the slides and get back to us. Isn't that nice? Yea there might be some growth or something changing but we'll just get back to you, no biggie. This is kinda what happened last MRI, except last time a Dr told me there was definitely something growing there and had me freaking out for days. If you don't remember from last time that "growth" turned out to be most likely scar tissue (most likely.. not to sound negative but they cant know for sure and that fact always makes me crazy.) Anyways, I tried not to be crazy this time and just stay positive. I'm trying so hard to have faith and not let anything get to me. If I know there is nothing there then I shouldn't be worried to death about the MRI's. ANYWAYS, today the neuro-oncology team looked over the slides and said they didn't see anything to be concerned with. Dr.Murali is out of the office but he will look at them when he gets back for the final say. Dr. Murali is her oncologist~who specializes in brain tumors and has worked at TCH for 20 years and actually took part in a AT/RT study at TCH. But it looks pretty good, I'm thinking if there was something suspect the neuro-onc team would just wait for him to look at them before they said anything. Although this is good news we did receive a bit of bad news today...
It looks like there has been some pretty significant damage to her hearing. :( They monitor it very closely because this is common with the cisplatin. Right now its only in the high pitch range which you don't actually use for normal hearing and speech. That is really great news! But its very close to the normal range. I'm so scared that there will more damage to it and it will affect her normal range hearing. She still has 2 rounds to go and apparently the chemo lingers in your ears and cause damage for up to 6 months after treatment is completed. :/ Like I said earlier this is common and they can adjust the doses of chemo if gets really bad. Its not something they like to do but they can. Suzette said that right now they won't change anything, we have to weigh our pros and cons... hearing aids vs regrowth. Its a no brainer but doesn't make it any easier. Also trying to stay positive with this, Suzette says that a lot of times the kids hearing takes a huge hit then its not effected anymore with remaining treatments. We can only pray. The unknown is so hard.
Ugh, its so hard to stay positive all the time. I think I'm going to take a solo trip to Austin this weekend to get away for a bit. Just the 2 weeks in the hospital was enough to make me crazy but I'm just tired of seeing the same walls everyday. All day everyday at the hospital, all night every night at home. I don't want to feel like this, I know this is all to make her better and it will be over soon. Its just very hard being trapped. We can't be in public at all, no restaurants, grocery shopping, trips to target, or anything. The only place we go to is a hospital surrounded by sick children all day, awaiting this weeks results... Hours waiting for labs to find out if her white blood cells are recovering or if she'll need a transfusion today. Waiting in fear for results of MRI's or Lumbar punctures, vision and hearing tests. Pleading with her to sit still and calm down for echos and ekgs, blood pressures and temperatures. Begging her to just take her medicine and not throw it back up, or actually eat something, anything. Listening to her scream bloody murder for dressing changes or baths, or anything she doesn't want to do these days. She has gotten into the habit of just screaming when she doesn't want to do something, like change her clothes, take a bite of something, walk. 36 lb. gets heavy after awhile. I'm whining. I know. I'm just tired. Three more months and this will be behind us. She will be all healed and the only thing I'll be going to hospital for will be the occasional MRI that will report nothing but good news for the rest of eternity.
Please pray that her hearing isn't affected anymore. That her body is protected from all the harmful side effects of these treatments, but that they do their job! That we can stand up and say we beat this monster! That her body recovers quickly from this round and stays strong for the next two. That she doesn't get another infection or fever and stays as healthy as one can possibly be during all this. Pray for strength, for Hayden and me, so we can continue this fight until we win this damn war. I hate cancer. I hate everything my baby has had to go through already and all the challenges and obstacles she will have to face in the future because of it. I hate all the pain and suffering its caused us and the fear, anxiety and uncertainty of the future that its brought for our family. Life isn't supposed to be this way. I know we have to continue to stay strong and have faith. I am and do. It's just time for a breather.
It looks like there has been some pretty significant damage to her hearing. :( They monitor it very closely because this is common with the cisplatin. Right now its only in the high pitch range which you don't actually use for normal hearing and speech. That is really great news! But its very close to the normal range. I'm so scared that there will more damage to it and it will affect her normal range hearing. She still has 2 rounds to go and apparently the chemo lingers in your ears and cause damage for up to 6 months after treatment is completed. :/ Like I said earlier this is common and they can adjust the doses of chemo if gets really bad. Its not something they like to do but they can. Suzette said that right now they won't change anything, we have to weigh our pros and cons... hearing aids vs regrowth. Its a no brainer but doesn't make it any easier. Also trying to stay positive with this, Suzette says that a lot of times the kids hearing takes a huge hit then its not effected anymore with remaining treatments. We can only pray. The unknown is so hard.
Ugh, its so hard to stay positive all the time. I think I'm going to take a solo trip to Austin this weekend to get away for a bit. Just the 2 weeks in the hospital was enough to make me crazy but I'm just tired of seeing the same walls everyday. All day everyday at the hospital, all night every night at home. I don't want to feel like this, I know this is all to make her better and it will be over soon. Its just very hard being trapped. We can't be in public at all, no restaurants, grocery shopping, trips to target, or anything. The only place we go to is a hospital surrounded by sick children all day, awaiting this weeks results... Hours waiting for labs to find out if her white blood cells are recovering or if she'll need a transfusion today. Waiting in fear for results of MRI's or Lumbar punctures, vision and hearing tests. Pleading with her to sit still and calm down for echos and ekgs, blood pressures and temperatures. Begging her to just take her medicine and not throw it back up, or actually eat something, anything. Listening to her scream bloody murder for dressing changes or baths, or anything she doesn't want to do these days. She has gotten into the habit of just screaming when she doesn't want to do something, like change her clothes, take a bite of something, walk. 36 lb. gets heavy after awhile. I'm whining. I know. I'm just tired. Three more months and this will be behind us. She will be all healed and the only thing I'll be going to hospital for will be the occasional MRI that will report nothing but good news for the rest of eternity.
Please pray that her hearing isn't affected anymore. That her body is protected from all the harmful side effects of these treatments, but that they do their job! That we can stand up and say we beat this monster! That her body recovers quickly from this round and stays strong for the next two. That she doesn't get another infection or fever and stays as healthy as one can possibly be during all this. Pray for strength, for Hayden and me, so we can continue this fight until we win this damn war. I hate cancer. I hate everything my baby has had to go through already and all the challenges and obstacles she will have to face in the future because of it. I hate all the pain and suffering its caused us and the fear, anxiety and uncertainty of the future that its brought for our family. Life isn't supposed to be this way. I know we have to continue to stay strong and have faith. I am and do. It's just time for a breather.
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