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!
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