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.
Sunday, October 16, 2011
Mark 11:22-23
22 So Jesus answered and said to them,
"Have faith in God.
23 For assuredly, I say to you, whoever
says to this mountain, 'Be removed and be
cast into the sea,' and does not doubt
in his heart, but believes that those things
he says will come to pass, he will have
whatever
"But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary, and they shall walk and not faint."
Isaiah 40:31
"Thy light shall break forth as the morning, and thy health shall spring forth speedily; and thy righteousness shall go before thee: the glory of the Lord shall be thy rear guard."
Isaiah 58:8
John 10:10 "The thief (satan) does not come except to steal, and to kill, and to destroy. I (Jesus) have come that they may have life, and that they may have it more abundantly."
Isaiah 41:10 "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."
Exodus 23:25 "So you shall serve (worship) the Lord your God and He will bless your bread and your water. And I will take sickness away from the midst of you."
Malachi 4:2-3 "But unto you that fear (reverence, worship) My name shall the Sun of Righteousness arise with healing in His wings; and you shall go forth, and grow up as calves of the stall. You shall trample the wicked for they shall be ashes under the soles of your feet on the day that I do this says the Lord of hosts"
Jeremiah 29:11 "For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope
Isaiah 57:19 "I create the fruit of the lips; Peace, peace to him that is far off, and to him that is near, saith the LORD; and I will heal him."
I love all these! :)
Today was Hayden's "rest" day before receiving her transplant tomorrow. Had she not had the infection we would be going home tomorrow too. But it looks like we will get to go home on Mon the 31. Whew, this will be our longest hospital stay! The blood culture came back negative today for the infection! Two days straight! After three days of negative cultures they consider it resolved but we still have to stay at the hospital to receive iv antibiotics round the clock. She's been running a really high fever, coughing, & sneezing so now we might be dealing with a viral thing :/ She's been placed on isolation, she can't leave the room and when they come in they are wearing full head to toe coverage.. So they don't carry it to another child with no immune system. This floor is crazy, but it's good. It sucks that she can't go play and she was very upset about it ALL day! There is this train toy that you ride, that she loves, and she wanted to go ride it so bad. I feel so bad bc I know it sucks to stay in her bed all day and at least he was able to ride the little train around the floor. They will send out a nasal wash tomorrow to see what's up.
No throwing up today or yesterday at all!! Praise the lord!! :) even took her off Ativan today, and still none! On the other hand, these super strong antibiotics are making a mess of her little tummy, I actually had to put a diaper on her :( BUT she ate today! After 3 days of not even a single bite, she ate a whole bean&cheese taco, and later almost a whole ham&cheese sandwich! Sooooo happy!! Yesterday all her electrolytes, phosphate,& calcium were all screwy. She was retaining water and not peeing at all. (which is a problem in it's own but also she has to pee every two hours while receiving cytoxin) her eyes swelled up and she could bearly open them :( but they adjusted all her fluids, and everything has sorted itself back out. Her eyes look much better. Fever still persisting but isn't getting quite as high. The other night it reached 104.6
Her mood has been off lately, she hasn't been her normal smiley good spirited self. She's been really down:( I don't blame her at all, i just know she's so uncomfortable and I wish so badly I could make it better. I know she doesn't understand why she's so sick especially when we try to explain the medicine we're giving her is making her feel this way. It's just not fair that she has to go through all this.I hate that we have to do All of these terrible things to her. I hate that she has to be in so much pain and be so sick. I try so hard to stay positive through this but watching your baby suffer so much makes it so hard. I just don't understand why. I try not to think this way but as I'm sitting here watching her breathing so hard, tossing and turning, rubbing her head and belly and whimpering I feel helpless. There is nothing I can do to make it better and I get so angry and sad that it's happening at all. I just try to remember that this will be over soon and we have to do it. We don't have a choice, this is the only way to save her life. Obviously we would do anything and if this is what it takes we can handle it.
I think this round has just been so much harder for all of us. Tomorrow will be a better day. I'm sure of it! Please continue to pray for Hayden that she feels better, fever breaks, staff infection is completely resolved, there is no viral infection, her belly stops bothering her, the nausea stays away, she can get off of isolation soon, rest easily, and that starts to feel like her normal happy self soon. PrAy for her strength and ours to get through this.
22 So Jesus answered and said to them,
"Have faith in God.
23 For assuredly, I say to you, whoever
says to this mountain, 'Be removed and be
cast into the sea,' and does not doubt
in his heart, but believes that those things
he says will come to pass, he will have
whatever
"But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary, and they shall walk and not faint."
Isaiah 40:31
"Thy light shall break forth as the morning, and thy health shall spring forth speedily; and thy righteousness shall go before thee: the glory of the Lord shall be thy rear guard."
Isaiah 58:8
John 10:10 "The thief (satan) does not come except to steal, and to kill, and to destroy. I (Jesus) have come that they may have life, and that they may have it more abundantly."
Isaiah 41:10 "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."
Exodus 23:25 "So you shall serve (worship) the Lord your God and He will bless your bread and your water. And I will take sickness away from the midst of you."
Malachi 4:2-3 "But unto you that fear (reverence, worship) My name shall the Sun of Righteousness arise with healing in His wings; and you shall go forth, and grow up as calves of the stall. You shall trample the wicked for they shall be ashes under the soles of your feet on the day that I do this says the Lord of hosts"
Jeremiah 29:11 "For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope
Isaiah 57:19 "I create the fruit of the lips; Peace, peace to him that is far off, and to him that is near, saith the LORD; and I will heal him."
I love all these! :)
Today was Hayden's "rest" day before receiving her transplant tomorrow. Had she not had the infection we would be going home tomorrow too. But it looks like we will get to go home on Mon the 31. Whew, this will be our longest hospital stay! The blood culture came back negative today for the infection! Two days straight! After three days of negative cultures they consider it resolved but we still have to stay at the hospital to receive iv antibiotics round the clock. She's been running a really high fever, coughing, & sneezing so now we might be dealing with a viral thing :/ She's been placed on isolation, she can't leave the room and when they come in they are wearing full head to toe coverage.. So they don't carry it to another child with no immune system. This floor is crazy, but it's good. It sucks that she can't go play and she was very upset about it ALL day! There is this train toy that you ride, that she loves, and she wanted to go ride it so bad. I feel so bad bc I know it sucks to stay in her bed all day and at least he was able to ride the little train around the floor. They will send out a nasal wash tomorrow to see what's up.
No throwing up today or yesterday at all!! Praise the lord!! :) even took her off Ativan today, and still none! On the other hand, these super strong antibiotics are making a mess of her little tummy, I actually had to put a diaper on her :( BUT she ate today! After 3 days of not even a single bite, she ate a whole bean&cheese taco, and later almost a whole ham&cheese sandwich! Sooooo happy!! Yesterday all her electrolytes, phosphate,& calcium were all screwy. She was retaining water and not peeing at all. (which is a problem in it's own but also she has to pee every two hours while receiving cytoxin) her eyes swelled up and she could bearly open them :( but they adjusted all her fluids, and everything has sorted itself back out. Her eyes look much better. Fever still persisting but isn't getting quite as high. The other night it reached 104.6
Her mood has been off lately, she hasn't been her normal smiley good spirited self. She's been really down:( I don't blame her at all, i just know she's so uncomfortable and I wish so badly I could make it better. I know she doesn't understand why she's so sick especially when we try to explain the medicine we're giving her is making her feel this way. It's just not fair that she has to go through all this.I hate that we have to do All of these terrible things to her. I hate that she has to be in so much pain and be so sick. I try so hard to stay positive through this but watching your baby suffer so much makes it so hard. I just don't understand why. I try not to think this way but as I'm sitting here watching her breathing so hard, tossing and turning, rubbing her head and belly and whimpering I feel helpless. There is nothing I can do to make it better and I get so angry and sad that it's happening at all. I just try to remember that this will be over soon and we have to do it. We don't have a choice, this is the only way to save her life. Obviously we would do anything and if this is what it takes we can handle it.
I think this round has just been so much harder for all of us. Tomorrow will be a better day. I'm sure of it! Please continue to pray for Hayden that she feels better, fever breaks, staff infection is completely resolved, there is no viral infection, her belly stops bothering her, the nausea stays away, she can get off of isolation soon, rest easily, and that starts to feel like her normal happy self soon. PrAy for her strength and ours to get through this.
Friday, October 14, 2011
Round 2 day 2
Good and bad news to report tonight. First the good: Hayden did much better with nausea today! Not nearly as much throwing much as yesterday, no blood in it, and she even got up to put on her T-Rex costume from grandma mullaney & take a trip to the playroom!!
Bad: the blood culture is positive for an infection :( very scary for us. You don't want to hear that your baby has a blood infection ever but especially not now. The nurse told us it's a staff infection and it's fairly common and easily treated, just means an extra 7-10 days at the hospital :(
Her nausea was better today but her fever is a little out of control. It hasnt been resolved yet and I know its draining her and making her feel more yucky than she should. Please pray that this infection is resolved very soon and she feels better in the upcoming days. Tomorrow is her last day of actual chemo for this round, I just hope she does well. We have to wake her every 2 hours to pee and it just makes me feel terrible bc she doesn't feel good, she's burning up and she doesn't want to go. She hasnt eaten or drank anything in 2 days and constantly has the hiccups.
I wish I had more positive things to report. She did just wake up and ask to watch dinosaur train and to color! Which is really wonderful except for the fact that it's 12 and we're exhausted! :) oh well!!
We have to remember that everything is going to fine. Hayden is strong and she'll get through this round and the next two. God is an amazing god and healer and is healing Hayden everyday. At times it might not some like it but we have to have faith that this is how it's supposed to be and that he is always one step ahead. If anything we can be reassured the chemo is working bc we can see the effects. We also have to remember that there are other forces out there trying to break our faith and we have to remain strong in what we believe.
Psalm 46:10 be still and know that I am god
Bad: the blood culture is positive for an infection :( very scary for us. You don't want to hear that your baby has a blood infection ever but especially not now. The nurse told us it's a staff infection and it's fairly common and easily treated, just means an extra 7-10 days at the hospital :(
Her nausea was better today but her fever is a little out of control. It hasnt been resolved yet and I know its draining her and making her feel more yucky than she should. Please pray that this infection is resolved very soon and she feels better in the upcoming days. Tomorrow is her last day of actual chemo for this round, I just hope she does well. We have to wake her every 2 hours to pee and it just makes me feel terrible bc she doesn't feel good, she's burning up and she doesn't want to go. She hasnt eaten or drank anything in 2 days and constantly has the hiccups.
I wish I had more positive things to report. She did just wake up and ask to watch dinosaur train and to color! Which is really wonderful except for the fact that it's 12 and we're exhausted! :) oh well!!
We have to remember that everything is going to fine. Hayden is strong and she'll get through this round and the next two. God is an amazing god and healer and is healing Hayden everyday. At times it might not some like it but we have to have faith that this is how it's supposed to be and that he is always one step ahead. If anything we can be reassured the chemo is working bc we can see the effects. We also have to remember that there are other forces out there trying to break our faith and we have to remain strong in what we believe.
Psalm 46:10 be still and know that I am god
Thursday, October 13, 2011
Chemo round 2 day 1
This time hasn't been as easy as the last. Hayden was sick all day, and just exhausted. :( For the most part she slept but woke up 1-2 times an hour to get sick. At one point there was blood in her throw up. It really scared me but they did blood work which showed no signs of bleeding and are confident she just busted a capillary from getting sick so much. :( It just breaks my heart. I hate watching her go through so much. And it doesn't seem like any of the anti nausea meds helped. She spiked a fever so they changed all her antibiotics to really strong ones and are doing blood cultures to test for any infections. The chemo ended around 8 and since then she was only sick once! She's just been alternating between Chrs and my laps. I've never seen her sleep so much. I'm hoping she will rest peacefully tonight bc tomorrow is another long day of chemo and long night of waking her up every two hours to pee. The drug they give er tomorrow is notorious fr making the kiddos sick so I'm prepared for the worst but hoping/praying for the best. I know chemo isn't supposed to easy and all these things are normal but it's still so hard. I can't wait for this to be over and she'll be a "normal" healthy little girl again!
I'm thinking all her fuzzy whispies are going to fall out this round. Her little eye brows are almost gone :( I've gotten so used to her little blonde baby hairs that she's kept, I don't want to see them go. I started noticing her eye brows about a week ago, boy have they thinned out. I was looking at old pictures last night and man did she have some "wolfy" eyebrows as my mom would say! Hehe. They are adorable! I miss her long completely unmanageable hair too. I hope for her (and my) sake it doesn't grow back any thicker than it was! :)
We're just trying to focus on getting her healthy and try not to dwell on the times that she doesn't feel so good. Already one day down of round two with two days to go. And already almost half way done with chemo altogether! Thank you everyone for your continued support and prayers!
I'm thinking all her fuzzy whispies are going to fall out this round. Her little eye brows are almost gone :( I've gotten so used to her little blonde baby hairs that she's kept, I don't want to see them go. I started noticing her eye brows about a week ago, boy have they thinned out. I was looking at old pictures last night and man did she have some "wolfy" eyebrows as my mom would say! Hehe. They are adorable! I miss her long completely unmanageable hair too. I hope for her (and my) sake it doesn't grow back any thicker than it was! :)
We're just trying to focus on getting her healthy and try not to dwell on the times that she doesn't feel so good. Already one day down of round two with two days to go. And already almost half way done with chemo altogether! Thank you everyone for your continued support and prayers!
Thursday, October 6, 2011
Time flies whether you're having fun or not. Not that we don't try to have as much fun as possible but it just seems like a few weeks ago we were moving down to Hoston. Now we have only 3 rounds of chemo left! And then it's nothing but clear skies and butterflies from there! Hayden will be all healed and we'll all live happily ever after. :)
Hayden has been doing really well! She's gotten sick a few times and seems to be sleeping longer these past few days but other than that has been wonderful! Her blood counts have recovered nicely and she was taken off the gcsf(drug to help bring blood counts up) and all the other meds ( including the penicillin that apparently tasted like poison). Since being off gcsf her counts dropped pretty drastically but that's normal and expected and were still at 2000 on mon. They started her on a new drug called bactrium that prevents a form of pneumonia that lives in the water/everywhere and if contracted is untreatable. Don't freak out it's extremely uncommon to get it if your immune system isn't compromised. So that has dropped her counts as well (I guess it's a pretty strong antibiotic...she only takes it 3 times a week and only when her counts are up enough to handle it). It's also most likely the culprit that's causing her to throw up the last few days :( I hate when she's sick. Hopefully she'll feel better the next few days since she will be off all meds til Sunday! FYI, her second round starts Sunday, remember to keep her in your prayers! Please!
Last week Grandma Mullaney came all the way from Buffalo to spend some time with us in Houston!! We had a wonderful time, it just went way too fast! Since we're not allowed to go out in public we just hung out around the house & watched movies. :) grandma got to spend lots of time with monkey cuddling, playing dinosaur, calling each other butt burps (hayden's favorite word..I'd like to blame that on Chris but she made it up herself..isnt it just wonderful) and playing games!! And by games I really just mean Dino puzzle or don't break the ice over and over and over and... Chris and I were able to get out together for a few drinks in the first time since I can't even remember. That was really nice! Lookin forward to seeing the rest of the family next month!
Hayden wants to be a dinosaur for Halloween, specifically a standing sharp tooth, aka a T-Rex. She's so cute. :) such a pretty little tomboy she is. Or monster, however you want to look at it. Another thing that cracks me up is watching her play with her cars and dinosaurs in her mermaid pony castle. Her hot wheels enjoy the slide as much as any pony! Haha. Shes a hoot. Till next time! XO
Hayden has been doing really well! She's gotten sick a few times and seems to be sleeping longer these past few days but other than that has been wonderful! Her blood counts have recovered nicely and she was taken off the gcsf(drug to help bring blood counts up) and all the other meds ( including the penicillin that apparently tasted like poison). Since being off gcsf her counts dropped pretty drastically but that's normal and expected and were still at 2000 on mon. They started her on a new drug called bactrium that prevents a form of pneumonia that lives in the water/everywhere and if contracted is untreatable. Don't freak out it's extremely uncommon to get it if your immune system isn't compromised. So that has dropped her counts as well (I guess it's a pretty strong antibiotic...she only takes it 3 times a week and only when her counts are up enough to handle it). It's also most likely the culprit that's causing her to throw up the last few days :( I hate when she's sick. Hopefully she'll feel better the next few days since she will be off all meds til Sunday! FYI, her second round starts Sunday, remember to keep her in your prayers! Please!
Last week Grandma Mullaney came all the way from Buffalo to spend some time with us in Houston!! We had a wonderful time, it just went way too fast! Since we're not allowed to go out in public we just hung out around the house & watched movies. :) grandma got to spend lots of time with monkey cuddling, playing dinosaur, calling each other butt burps (hayden's favorite word..I'd like to blame that on Chris but she made it up herself..isnt it just wonderful) and playing games!! And by games I really just mean Dino puzzle or don't break the ice over and over and over and... Chris and I were able to get out together for a few drinks in the first time since I can't even remember. That was really nice! Lookin forward to seeing the rest of the family next month!
Hayden wants to be a dinosaur for Halloween, specifically a standing sharp tooth, aka a T-Rex. She's so cute. :) such a pretty little tomboy she is. Or monster, however you want to look at it. Another thing that cracks me up is watching her play with her cars and dinosaurs in her mermaid pony castle. Her hot wheels enjoy the slide as much as any pony! Haha. Shes a hoot. Till next time! XO
Tuesday, September 20, 2011
Wow, we finished the first round of chemo! Home for three days now, things have been great so far. Blood work today was good! Dropping but slowly, no transfusions yet. It's not supposed to drop completely until around day 7. She is still on tpn (the supplement) until she starts eating normally again. Today was the first day that she actually ate pretty good...a whole hotdog minus the bun and a whole can of spaghettio's minus the meatballs. She's been drinking good, lots of water and orange juice. I'm also still doing the gcsf (drug to help bring back white blood cells). We go back Thursday for blood work and another dose of vincristine.
Hayden is doing really well, lots of energy still. :) she has to take lots of medicines now, she normally does pretty good with her meds but she hates hates one of them and screams and freaks out when it's time to take it. I'm talking freaks out, I feel like she's going to make herself sick from screaming so much, it's a bit dramatic. It's really not thaaat bad, honestly I think the colace is much worse (that might be bc it tastes like yager..I guess Hayden hasn't drank enough yager to realize how gross that flavor is... one day :P) This evening I mixed it with chocolate syrup and it seemed to help...we shall see, wish me luck!
We ran into our friend today from Austin that also has atrt, Nicole!! She is doing great! It makes me so happy to see her up and feeling good! It's amazing how much difference just a few weeks make!<~especially when part of that time is spent at home! She will start proton this week and will follow the same treatment plan as Hayden (we have all the same dr's..even the ones in Austin!) Please don't forget to keep all of our friends in your prayers while your praying for monkey! Nicole, Carlie(who btw is doing really good as well, finished her first rounds too, Jaylie (finished round two and doing good!) and Jaxon (finished round two, also doing good!). There are many more but these are the ones we see the most and know by name.
Started decorating the house for Halloween!!! Hayden says she wants to be a dinosaur for Halloween this year! I love this time of year! :)
Hayden is doing really well, lots of energy still. :) she has to take lots of medicines now, she normally does pretty good with her meds but she hates hates one of them and screams and freaks out when it's time to take it. I'm talking freaks out, I feel like she's going to make herself sick from screaming so much, it's a bit dramatic. It's really not thaaat bad, honestly I think the colace is much worse (that might be bc it tastes like yager..I guess Hayden hasn't drank enough yager to realize how gross that flavor is... one day :P) This evening I mixed it with chocolate syrup and it seemed to help...we shall see, wish me luck!
We ran into our friend today from Austin that also has atrt, Nicole!! She is doing great! It makes me so happy to see her up and feeling good! It's amazing how much difference just a few weeks make!<~especially when part of that time is spent at home! She will start proton this week and will follow the same treatment plan as Hayden (we have all the same dr's..even the ones in Austin!) Please don't forget to keep all of our friends in your prayers while your praying for monkey! Nicole, Carlie(who btw is doing really good as well, finished her first rounds too, Jaylie (finished round two and doing good!) and Jaxon (finished round two, also doing good!). There are many more but these are the ones we see the most and know by name.
Started decorating the house for Halloween!!! Hayden says she wants to be a dinosaur for Halloween this year! I love this time of year! :)
Wednesday, September 14, 2011
Chemo day 4
Today was a great day! She didn't get sick at all and was in a good mood all day! She slept a lot though, and went to bed around 8:30...which is unusual for her as she's usually up til 11:30 or later these days. I'm sure she'll sleep more and more. It seems like most people are pretty impressed with her energy & activity levels..they stay high not only while receiving chemo but also benedryl, antibiotics, some anti nausea meds and a handful of other meds around the clock! She cracks me up, they'll be like okay we're giving her (or whatever) so she should sleep for a bit, we're like haha yea right..you can see in their faces their thinking silly parents, she'll fall asleep in no time..and then they are like dang, she really isn't going to sleep, in fact she's playing dinosaur. The only one that does get her is phenagrin. She had that again today during chemo and slept through it. When she woke I was waiting for her to get sick like yesterday but she never did! :) :) :)
Tomorrow is a rest day. I'm going to run home to sanitize everything and prepare for our return. Chris has to leave Sunday (sad face) and he's going to take Sasha back home with him (another sad face). We just can't take any chances, although Sasha brings us all great joy we just can't risk having the litter box around. There arent many reasons to be happy that we are so far away, but I think it's a blessing to have our apartment here which is free from dog and cat germs and probably a billion times cleaner than our house at home. Thank you to our family for helping us with that(among countless other things), our "Houston home" is a little safe haven; a home away from home! We have the best family and support groups! I just don't know how we would do this without all of you!Every person in our lives has been a godsend and we love you all so much!
The worst of this stay is over, it wasn't perfect but it wasn't terrible either. Like I said, Hayden has thrown up before, this time it's because the bad cells are getting attacked and killed and not bc the bad cells are spreading like wild fire attacking everything in their path..when you look at it that way, chemo doesn't seem so bad and we basically sailed through this round! Fight fire with fire, and lots of it!! Hayden is superhuman strong (especially for a 3 yr old) it's hard not to think that some part of her wasnt built for this fight. She was born ready! I'm so proud of her strength, her fight, her endurance, her stubbornness and her willingness and desire to stay happy & laughing through this all! She s such an amazing little girl!
She still has the transplant on Friday! It's possible to have a reaction to the preservative in her cells, but that's not usually so bad and since they are her own cells it's not likely her body will reject them but these things can be crazy..I doubt it though. I just know she's going to do great even if she does smell like cream corn dipped in garlic. (doesn't really sound to bad to me but everyone keeps saying it like it's terrible..We'll see) The whole transplant is really cool. We are very lucky to have the opportunity to do it. They don't do it everywhere. I always though a bone marrow consisted of sucking out the marrow and injecting new (donated) marrow into the bones in a very painful operation. But no, it's not like that at all. Whether it's donated o your own (in hay dens case, her own) it just goes in like any other transfusion. After the stem cells are placed she is given a drug to help them multiply. There is no crazy sucking out of the old Marrow, for Hayden (and pretty much anyone receiving a bone marrow transplant) there will basically be none to suck out anyways. the cells have to go in bc there will be none there, her white blood count will literally drop to zero. Scary and pretty crazy. All is well, we'll keep her super protected from germs while she has no defenses.
Every day we get closer and closer to the end of treatments! I'm so excited that everything is going so smoothly! We have been so blessed and are soo lucky to live so close to Houston, where the magic happens! Which reminds me, a nurse told me today that nurses in Houston get paid about 10$ more an hour than Austin.. Yikes!! I'm not moving to Houston. I'm just saying...
Good night all! Keep Hayden in your prayers, it's the most important thing you can do for us!!
Tomorrow is a rest day. I'm going to run home to sanitize everything and prepare for our return. Chris has to leave Sunday (sad face) and he's going to take Sasha back home with him (another sad face). We just can't take any chances, although Sasha brings us all great joy we just can't risk having the litter box around. There arent many reasons to be happy that we are so far away, but I think it's a blessing to have our apartment here which is free from dog and cat germs and probably a billion times cleaner than our house at home. Thank you to our family for helping us with that(among countless other things), our "Houston home" is a little safe haven; a home away from home! We have the best family and support groups! I just don't know how we would do this without all of you!Every person in our lives has been a godsend and we love you all so much!
The worst of this stay is over, it wasn't perfect but it wasn't terrible either. Like I said, Hayden has thrown up before, this time it's because the bad cells are getting attacked and killed and not bc the bad cells are spreading like wild fire attacking everything in their path..when you look at it that way, chemo doesn't seem so bad and we basically sailed through this round! Fight fire with fire, and lots of it!! Hayden is superhuman strong (especially for a 3 yr old) it's hard not to think that some part of her wasnt built for this fight. She was born ready! I'm so proud of her strength, her fight, her endurance, her stubbornness and her willingness and desire to stay happy & laughing through this all! She s such an amazing little girl!
She still has the transplant on Friday! It's possible to have a reaction to the preservative in her cells, but that's not usually so bad and since they are her own cells it's not likely her body will reject them but these things can be crazy..I doubt it though. I just know she's going to do great even if she does smell like cream corn dipped in garlic. (doesn't really sound to bad to me but everyone keeps saying it like it's terrible..We'll see) The whole transplant is really cool. We are very lucky to have the opportunity to do it. They don't do it everywhere. I always though a bone marrow consisted of sucking out the marrow and injecting new (donated) marrow into the bones in a very painful operation. But no, it's not like that at all. Whether it's donated o your own (in hay dens case, her own) it just goes in like any other transfusion. After the stem cells are placed she is given a drug to help them multiply. There is no crazy sucking out of the old Marrow, for Hayden (and pretty much anyone receiving a bone marrow transplant) there will basically be none to suck out anyways. the cells have to go in bc there will be none there, her white blood count will literally drop to zero. Scary and pretty crazy. All is well, we'll keep her super protected from germs while she has no defenses.
Every day we get closer and closer to the end of treatments! I'm so excited that everything is going so smoothly! We have been so blessed and are soo lucky to live so close to Houston, where the magic happens! Which reminds me, a nurse told me today that nurses in Houston get paid about 10$ more an hour than Austin.. Yikes!! I'm not moving to Houston. I'm just saying...
Good night all! Keep Hayden in your prayers, it's the most important thing you can do for us!!
Quick update
It's cytoxin that she has to pee every 2 hrs with. so last night we had get her up and have her go around the clock.. She was great about it! I'm so proud of her! We're all a sleepy this morning but nothing that a little (or alot) of coffee can't fix! :) two whole days of this...they keep her full of fluids so really it's no biggie.
Shes in a great mood right now and is asking for French fries! She is currently poking chris's eyes out (he won't stop messing with her) they are reading spalt the cat and making silly faces!!
The nurse this morning said that this day is usually better or the same or yesterday, that's great news!! I feel like yesterday went pretty good!
Annd we caught the rash in time!! It's a tiny bit red but has definitely improved and isn't itching her!
Ariel is at toys r us searching for kitten...I hope they have one!! I think I can order her online if not, Hayden thinks she went on vacation and that seems to be fine for right now. While kitten is on vaca kitty (kittens sister) came to keep her company.
Annd my sister just walked in with kitten!!! It's going to be a great day!!
Shes in a great mood right now and is asking for French fries! She is currently poking chris's eyes out (he won't stop messing with her) they are reading spalt the cat and making silly faces!!
The nurse this morning said that this day is usually better or the same or yesterday, that's great news!! I feel like yesterday went pretty good!
Annd we caught the rash in time!! It's a tiny bit red but has definitely improved and isn't itching her!
Ariel is at toys r us searching for kitten...I hope they have one!! I think I can order her online if not, Hayden thinks she went on vacation and that seems to be fine for right now. While kitten is on vaca kitty (kittens sister) came to keep her company.
Annd my sister just walked in with kitten!!! It's going to be a great day!!
Tuesday, September 13, 2011
Chemo day 3
Its day 3 at the hospital, day 2 of chemo. Yesterday was a little rough, she got sick about 4 times and had diarrhea all day :( I wasn't expecting her to be sick the first day. The good thing was that it came and went really fast. She wasn't nauseous the whole time. It would just come over her really fast, she would be sick a few times then it would pass. I don't think her belly was feeling amazing the whole time but I don't the room was spinning either. Honestly the diarrhea probably felt kinda good since she's been backed up for months. (that might be tmi but this is as much a record for me as it is for y'all) She didn't eat or drink anything yesterday after the chemo stared but before she ate mashed potatoes, a piece of bread, French fries and a bun from a mcdonalds cheeseburger. I think her body was storing some energy. Yesterday there was a lot going on. She had one drug run over 6 hours(cisplatinum~ makes her feel yucky), one that ran through iv in a bag that they just hold up, probably took about 5 min, was the first one to go in (vincristine~ no immediate side effects) and another that is actually a protectant but with nasty side effects that she to do twice (amifostine~ immediately drops blood pressure, makes her super nauseous & sick,she also hates it bc she has to lay flat for twenty min while it goes in...the effects are immediate and last the whole time and about 30 min after. Blood pressure, however, goes up in about 5-10 min. Well it did both times yesterday, they are ready if it doesn't..) chemo started at 2 and was over at eight. Her line still isn't working properly... Oh I guess I forgot to mention that...they had to put in some kind of med that dissolves clots cause they think there is some kind of flap over the line..the med didn't work but if she lays on her right side with her left arm over her head, elbow bent blood flows great. It doesn't seem like a big deal but they draw labs every 2 hrs around the clock..pain in the butt. (It seems to be working much better today however.) Also, her favorite little kitten got mixed up with linen... She's been asking for her all day:/ they called down to laundry to see if they could find her..no luck yet. She slept really good last night and woke up feeling this morning! She didn't feel like eating or drinking until later this evening but was playing and doing good for most of the day. The drug she got today(remember we were told really makes you sick) cytoxin or cyclophosphamide ran in over an hour. I didn't want a repeat of yesterday and since it was pretty For sure it was going to make her sick I had them give her phenegrin(anti nausea that knocks you out cold) about thirty min before they started the chemo. She slept through it then for an extra 30 min. She woke up got sick, got more anti nausea meds and as been good ever since. :) BUT they changed her dressing for her line and some stupid idiot put something on her skin after I said repeatedly not to do anything extra, just betadine and the dressing. They never listen. So she started having an allergic reaction to whatever it was..oh but it's just a skin protectant blah blah blah, I'm like I don't care what it is, if I say don't use it,then don't use it! So i changed the dressing since they obviously are incapable of such a task, and they gave her benedryl..Im praying this takes care of it. These rashes get crazy out of control and are so miserable for her :( with everything that's happening we don't need a freaking crazy rash that itches so bad she can't even sleep!! Ah, are you kidding me!!! Anyways, she ate m&ms, a chicken nugget, 6 gold fish, doritos, French fries and has been drinking sweet tea this evening!! So awesome!! Today was good! She still has energy and I'm glad she's eating. We're all doing really good keeping smiles on our faces and being strong for Hayden, I'm proud of us. I wanted to flip out about the rash...but I didn't..i left the unit and called my mom screamed & cursed then came back like nothing was wrong. It doesn't seem like a big deal in the grand scem of things but it's just something that we shouldn't have to deal with, it's completely avoidable and rashes are terrible. (apparently I'm not over it yet)
Blood work as been good so far, one dip in calcium but that's expected and was fixed as soon as it happened. It's funny how her blood counts are "good" they've been waaaay lower than they should be for the past few months bu not low enough for transfusions so that's good. They will be though and when that happens please don't get offended if I harrass you about your health, breathing on or around her and have you use Sanitizer in front of my eyes, and possibly not let you touch her.. Haha I'm kidding! Sort of.. :)
Tomorrow is cytoxin again. The second day of it, for obvious reasons, should be a little tougher but hopefully we can pull another day like today!! Keep the prayers coming!!
Go Team Hayden!!! Rrrraawwwwrrrrrr!!!!!
Blood work as been good so far, one dip in calcium but that's expected and was fixed as soon as it happened. It's funny how her blood counts are "good" they've been waaaay lower than they should be for the past few months bu not low enough for transfusions so that's good. They will be though and when that happens please don't get offended if I harrass you about your health, breathing on or around her and have you use Sanitizer in front of my eyes, and possibly not let you touch her.. Haha I'm kidding! Sort of.. :)
Tomorrow is cytoxin again. The second day of it, for obvious reasons, should be a little tougher but hopefully we can pull another day like today!! Keep the prayers coming!!
Go Team Hayden!!! Rrrraawwwwrrrrrr!!!!!
Sunday, September 11, 2011
Chemo Day 1
Well day 1 consist of just fluids and antibiotics! Which is nice, we kinda get to ease into it. Tomorrow starts actual chemo. Tomorrow she gets cisplatinum, vincristine, and amifostine. Amifostine is some kind of protectant~not a chemotherapy drug. With the vincristine she will have to pee every two hours...that's gonna be tons of fun trying to make her pee that much, haha, oh boy. Tuesday and Wednesday she gets cyclophosphamide and mesna. Mesna is a bladder protectant. It seems that cyclophosphamide is the big one with nausea and tends to make them sick more so than the others (not that the others can't or won't). But in addition to these they also give her medicines that help with all that. I'm not too worried about it, if she does start to feel yucky we'll try some other meds and get her all fixed up! A little nausea now for a lifetime of no cancer is well worth it. Other side effects include hair loss (no biggie...although I am fond of her little whispies) constipation (nothing new for her) diarrhea, blood counts dropping to zero, tired/weak, high blood pressure, increased risk for infections, mouth sores, no appetite...wow, listing them like that sounds terrible, so I'll just stop there. Anyways, she is very lucky to be able to receive her own little blood stem cells back and a drug called gcsf (this happens on Friday and if all goes well, we will get released that day!). This will up her blood counts super fast and have her feeling up to speed in no time! Most of the weakness, infections, etc come from low counts so if that's under control we'll be good. Chemo is chemo, we all know it's very hard but we have to do what we have to do. I'm interested to see how much this actually slows Hayden down...she was supposed to experience extreme fatigue and even low blood counts from radiation. Anyone who knows us knows that did not happen! Lol! We're told to expect lots of transfusions during this time. Also should expect sometime after going home to be put on tpn, a nutritional supplement that goes into her line (this is bc the nausea, potty problems, and mouth sores push eating to the back burner).
So that's what's going on. Hayden is in good spirits and like always has tons of energy! She doesn't mind being in the hospital, she's getting used to it. Can't wait to be done with all this. Hayden is such a tough, brave little girl...we have to stay smiling and positive for her even when it gets hard. Everything is going to turn out perfect when this is over! I just know it!
So that's what's going on. Hayden is in good spirits and like always has tons of energy! She doesn't mind being in the hospital, she's getting used to it. Can't wait to be done with all this. Hayden is such a tough, brave little girl...we have to stay smiling and positive for her even when it gets hard. Everything is going to turn out perfect when this is over! I just know it!
Saturday, September 10, 2011
I don't think I'm the best blogger.. I'll try really hard to post more... :)
A lot of things have happened since my last blog! We went back to Austin for a week and were supposed to start chemo last Thursday, but that got pushed back till tomorrow! While we were in Austin we had a benefit at Baker St. Pub and a Pageant benefiting Hayden today in Houston! The Baker St. benefit was lots of fun! We sold raffle tickets for a bunch of gift cards that were donated by friends, Baker St., and restaurants in the area! We weren't sure how it was going to turn out but it was a giant success and lots fun! The pageant today was put on by a wonderful lady who we don't even know! She puts on beauty pageants benefiting children's charities and heard about Hayden and wanted to do one for her! We didn't think we were going to be able to attend because Hayden was supposed to start chemo last Thursday, but bc that got pushed back, we got to go!! And I'm so glad we did!! It was lots of fun! One of the pageant moms, who is very crafty, made Hayden a ton of hair bands with interchangeable bows & cute things and knitted hats!! One is a monkey!! How perfect is that!! Its so amazing to see how kind and selfless people can be! Puts a big smile on my face! Hayden became a Forever Angels Lifetime Queen, and got her own sash and beautiful crown!! So cool!
Since we didn't start chemo as planned (which I have to admit at first I was upset about it, I mean I have been mentally prepared to start that day for a few months..it was just kinda like What?!? but honestly how can you upset about having a few extra days!) Chris and I decided to spend the weekend as if we were on a mini vaca! Chris took off time to be with Hayden during chemo, so we were all together.. We were going to return to Austin for the next few days but the smoke in Austin is increasing and air quality is decreasing so we didn't want to take any chances, especially since the collapsing lung issue (which btw has completely fixed itself, but you can never be too safe)! Anywho, we took a little trip to Kemah Boardwalk, a little town about 45 min away, with a super cool little coney island type amusement park on the boardwalk. We had a blast! Monkey loved the ferris wheel, carousal, airplanes, and just spending the day hanging out in the beautiful weather watching the waves! Will definitely be going back there! Then Friday we got stuck at the dr's for a bit bc her central line wasn't drawing blood! I was like oh hell no, that would be a really bad thing..worse case: it slipped out of her vein and would have to visit OR again. But it was just being finicky (like the person it is on) and started working! Thank god!! We got out a little late but had promised to go to the zoo, so we did! Saw the important things..elephants, all the cats, giraffes... but I still haven't seen any zebras there, whats up with that? Afterwards we treated ourselves to Pappasitos!! Delicious! Today, Ariel came back to Houston (she's my guardian angel and is going to stay with monkey and me for the rest of treatments) and my dad came along to visit for the day. We loved Pappasitos so much yesterday we had to go back again today! (fyi..the pappas restaurants originated here in Houston and they are everywhere..its hard to resist!) We had a great weekend, I'm soo glad chemo got pushed back! :)
I wish it didn't have to start at all, but it does. So tomorrow is the big day. We don't know for sure what time yet bc they still don't have a room..which is why it got pushed back in the first place, they had too many kids on the bone marrow transplant floor.. they can't mess with the ones that are supposed to be starting their second or third rounds, but bc monkey hasn't started yet they are able to change the schedule up a little.. this is fine with me as I'm sure next month when Hayden has to start exactly 28 days later another child will get pushed back a bit. All of the little ones we know that have gone through their first round have done really well so far and we have high hopes that Hayden will too. Like I've been saying I'm going to remain positive and think the best! I'm using the things from the book The Secret... I know some of you thought I was crazy the other day when I was practicing my secret things with the MRI.. but it worked! So my new thing that I'm willing to happen is Hayden 5 years from now (with her big beautiful eyes and long hair) getting a plaque (right now its from Lance...its my vision, don't laugh) that says AT/RT survivor!! There is a big crowd and everyone is celebrating Hayden beating this monster!! Yay! It's going to be so awesome! I can't wait, it's going to be one hell of a party! :) Besides that, we're just going to take it one day at a time! Keep Hayden in your prayers! Last step of treatment guys!! Hayden has already gone through brain surgery and 6 weeks of radiation~ I just can't believe how amazing she has done and that we are 2/3 of the way done! 4 months and we'll return to the normal chaos of everyday life! Ah, I can't wait!! :) I will do my best to keep everyone updated! XOXOX
A lot of things have happened since my last blog! We went back to Austin for a week and were supposed to start chemo last Thursday, but that got pushed back till tomorrow! While we were in Austin we had a benefit at Baker St. Pub and a Pageant benefiting Hayden today in Houston! The Baker St. benefit was lots of fun! We sold raffle tickets for a bunch of gift cards that were donated by friends, Baker St., and restaurants in the area! We weren't sure how it was going to turn out but it was a giant success and lots fun! The pageant today was put on by a wonderful lady who we don't even know! She puts on beauty pageants benefiting children's charities and heard about Hayden and wanted to do one for her! We didn't think we were going to be able to attend because Hayden was supposed to start chemo last Thursday, but bc that got pushed back, we got to go!! And I'm so glad we did!! It was lots of fun! One of the pageant moms, who is very crafty, made Hayden a ton of hair bands with interchangeable bows & cute things and knitted hats!! One is a monkey!! How perfect is that!! Its so amazing to see how kind and selfless people can be! Puts a big smile on my face! Hayden became a Forever Angels Lifetime Queen, and got her own sash and beautiful crown!! So cool!
Since we didn't start chemo as planned (which I have to admit at first I was upset about it, I mean I have been mentally prepared to start that day for a few months..it was just kinda like What?!? but honestly how can you upset about having a few extra days!) Chris and I decided to spend the weekend as if we were on a mini vaca! Chris took off time to be with Hayden during chemo, so we were all together.. We were going to return to Austin for the next few days but the smoke in Austin is increasing and air quality is decreasing so we didn't want to take any chances, especially since the collapsing lung issue (which btw has completely fixed itself, but you can never be too safe)! Anywho, we took a little trip to Kemah Boardwalk, a little town about 45 min away, with a super cool little coney island type amusement park on the boardwalk. We had a blast! Monkey loved the ferris wheel, carousal, airplanes, and just spending the day hanging out in the beautiful weather watching the waves! Will definitely be going back there! Then Friday we got stuck at the dr's for a bit bc her central line wasn't drawing blood! I was like oh hell no, that would be a really bad thing..worse case: it slipped out of her vein and would have to visit OR again. But it was just being finicky (like the person it is on) and started working! Thank god!! We got out a little late but had promised to go to the zoo, so we did! Saw the important things..elephants, all the cats, giraffes... but I still haven't seen any zebras there, whats up with that? Afterwards we treated ourselves to Pappasitos!! Delicious! Today, Ariel came back to Houston (she's my guardian angel and is going to stay with monkey and me for the rest of treatments) and my dad came along to visit for the day. We loved Pappasitos so much yesterday we had to go back again today! (fyi..the pappas restaurants originated here in Houston and they are everywhere..its hard to resist!) We had a great weekend, I'm soo glad chemo got pushed back! :)
I wish it didn't have to start at all, but it does. So tomorrow is the big day. We don't know for sure what time yet bc they still don't have a room..which is why it got pushed back in the first place, they had too many kids on the bone marrow transplant floor.. they can't mess with the ones that are supposed to be starting their second or third rounds, but bc monkey hasn't started yet they are able to change the schedule up a little.. this is fine with me as I'm sure next month when Hayden has to start exactly 28 days later another child will get pushed back a bit. All of the little ones we know that have gone through their first round have done really well so far and we have high hopes that Hayden will too. Like I've been saying I'm going to remain positive and think the best! I'm using the things from the book The Secret... I know some of you thought I was crazy the other day when I was practicing my secret things with the MRI.. but it worked! So my new thing that I'm willing to happen is Hayden 5 years from now (with her big beautiful eyes and long hair) getting a plaque (right now its from Lance...its my vision, don't laugh) that says AT/RT survivor!! There is a big crowd and everyone is celebrating Hayden beating this monster!! Yay! It's going to be so awesome! I can't wait, it's going to be one hell of a party! :) Besides that, we're just going to take it one day at a time! Keep Hayden in your prayers! Last step of treatment guys!! Hayden has already gone through brain surgery and 6 weeks of radiation~ I just can't believe how amazing she has done and that we are 2/3 of the way done! 4 months and we'll return to the normal chaos of everyday life! Ah, I can't wait!! :) I will do my best to keep everyone updated! XOXOX
Tuesday, August 30, 2011
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! :)
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! :)
Monday, August 29, 2011
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!
Thursday, August 25, 2011
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.
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.
Tuesday, August 23, 2011
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!!!
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...
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.
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 20th 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 13th. 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. 19th 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.
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
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