Saturday, August 27, 2011
Thursday, August 25, 2011
Day + 90!!!
Greetings Friends and faithful followers,
We had a pretty good day today. We saw Dr Wagner this morning and he said she is doing really good for this stage of transplant and that over the next two weeks we will watch everything closely and if we stay the same we will be able to go home!! Our plan is to leave either on the 8th in the evening or early on the 9th. We will be driving straight through all the way home. We will have to be back to our home hematologist either on the Monday(12) or Tuesday (13). There are a lot of details to work out between now and then but we have a bit of time for that. The main thing here is to pray and pray hard that the hemorrhagic cystitis stays away. That is the only thing that would keep us here...if it flares up in the days before we are to leave so please pray that it stays away!! Especially since we are flying my hubby up here to drive us home and he really can't miss any more work than the few days off as he is out of time.
Her counts were OK but we are going in the morning to get a CBC to check where they are. Then again on Monday to see the NP and to get counts and possible platelet infusion. On next Thursday she will have her bone marrow biopsy, then on the 8 we will discuss the results.
I also have another prayer request for a special friend of ours that we met here. Please say a prayer for Sam!! He is 30 days post BMT and he has to go back in for some more chemo (he has FA also) but he has 3% blast in his marrow. Please pray for precious Sam!!
Thank you all very much for your prayers. We all need them and we all appreciate them!
Blessings,
~Kelly
We had a pretty good day today. We saw Dr Wagner this morning and he said she is doing really good for this stage of transplant and that over the next two weeks we will watch everything closely and if we stay the same we will be able to go home!! Our plan is to leave either on the 8th in the evening or early on the 9th. We will be driving straight through all the way home. We will have to be back to our home hematologist either on the Monday(12) or Tuesday (13). There are a lot of details to work out between now and then but we have a bit of time for that. The main thing here is to pray and pray hard that the hemorrhagic cystitis stays away. That is the only thing that would keep us here...if it flares up in the days before we are to leave so please pray that it stays away!! Especially since we are flying my hubby up here to drive us home and he really can't miss any more work than the few days off as he is out of time.
Her counts were OK but we are going in the morning to get a CBC to check where they are. Then again on Monday to see the NP and to get counts and possible platelet infusion. On next Thursday she will have her bone marrow biopsy, then on the 8 we will discuss the results.
I also have another prayer request for a special friend of ours that we met here. Please say a prayer for Sam!! He is 30 days post BMT and he has to go back in for some more chemo (he has FA also) but he has 3% blast in his marrow. Please pray for precious Sam!!
Thank you all very much for your prayers. We all need them and we all appreciate them!
Blessings,
~Kelly
Tuesday, August 23, 2011
Day + 88
We had a pretty good weekend. Saturday we went out for a ride and to get Amelia some fried chicken from Kentucky Fried Chicken, she was not happy with it. It was spicy to her. We still had a good time just getting out and riding. Amelia loves to get out and just ride around in the car. Sunday we didn't do a lot the weather was so beautiful here. I cooked her some breakfast in the morning of biscuits and bacon for her and some scrambled eggs for everyone else. Then she and I went on a wagon ride...well she rode and I pulled her around the park across the street from the Ronald McDonald House and then we sat and watched some kids play soccer in the park. It was a beautiful day. Then we had some local friends come by and visit us for a while. Later Amelia talked my mom into frying her some chicken and making dirty rice. She ate pretty good.
Monday we had to go to clinic to get counts. It took us a little while because they misplaced her paper work. Finally her counts came back and they all looked pretty good. She had last had blood and platelets on Friday and her counts were White blood cells 4.6, Hemoglobin was 11.6 and platelets were 61. She was still a little low on her potassium and magnesium, but we opted not to infuse her and add them to her regular fluids.
We returned to clinic again this morning and her counts tend to bounce around, they try to reassure me that this is so normal for this stage in the game, but it makes me nervous and I want her to be better.....I KNOW...all good things come to those who wait..
Anyway her white cells today was 3.3, hemoglobin 11.1 and her platelets were 52. and of course her Potassium and Magnesium were both low still...so to the infusion room we went to get potassium, magnesium and platelets. The NP decided to start her on some potassium supplements...pray that Amelia will be able to swallow them, I can split them in half but she hates taking pills period so it's a chore to get her to take any of them! We will see tomorrow morning. We return to clinic on Thursday to see Dr Wagner. There are a lot of things to discuss with him and I am sure I will forget half of it. One of the main things that Amelia is defiantly going to be asking him is when she can go home!
These are our appointments over the next few weeks, if every thing remains the same as it is now and PRAYING hard it will. Thursday the 25th we see Dr Wagner. Monday we see a NP and assess blood counts and the need or lack of need for products, Sept. 1st (Thursday) we go to clinic for health and history and then head down to peds sedation for a bone marrow biopsy. Then back again to the clinic on probably the 6th as I think they are closed on the 5th. Then our final (praying really hard that it is) appointment with Dr Wagner is on the 8th of Sept. We will be keeping her central line in as she will still need to be on fluids for this stupid HC and she is on caspofungin, and it is only given IV, she was unable to take the Voriconazole, she was allergic to that one too just like Marshall was.
If he tells us that we can go home we will be heading home that afternoon and we will not stop till we reach our house!!!! Other than potty breaks!! We are all sitting on pins and needles. I know that I will need to call and make an appointment with our home hematologist as I know that will be one of the conditions that Dr Wagner will say, yes we can go home as long as we are able to get into see the local hematologist ASAP!
Thanks for all the prayers, we really appreciate them all, please continue to pray for her and that we are able to return home, she is SO ready to be home!
Blessings,
~Kelly
Monday we had to go to clinic to get counts. It took us a little while because they misplaced her paper work. Finally her counts came back and they all looked pretty good. She had last had blood and platelets on Friday and her counts were White blood cells 4.6, Hemoglobin was 11.6 and platelets were 61. She was still a little low on her potassium and magnesium, but we opted not to infuse her and add them to her regular fluids.
We returned to clinic again this morning and her counts tend to bounce around, they try to reassure me that this is so normal for this stage in the game, but it makes me nervous and I want her to be better.....I KNOW...all good things come to those who wait..
Anyway her white cells today was 3.3, hemoglobin 11.1 and her platelets were 52. and of course her Potassium and Magnesium were both low still...so to the infusion room we went to get potassium, magnesium and platelets. The NP decided to start her on some potassium supplements...pray that Amelia will be able to swallow them, I can split them in half but she hates taking pills period so it's a chore to get her to take any of them! We will see tomorrow morning. We return to clinic on Thursday to see Dr Wagner. There are a lot of things to discuss with him and I am sure I will forget half of it. One of the main things that Amelia is defiantly going to be asking him is when she can go home!
These are our appointments over the next few weeks, if every thing remains the same as it is now and PRAYING hard it will. Thursday the 25th we see Dr Wagner. Monday we see a NP and assess blood counts and the need or lack of need for products, Sept. 1st (Thursday) we go to clinic for health and history and then head down to peds sedation for a bone marrow biopsy. Then back again to the clinic on probably the 6th as I think they are closed on the 5th. Then our final (praying really hard that it is) appointment with Dr Wagner is on the 8th of Sept. We will be keeping her central line in as she will still need to be on fluids for this stupid HC and she is on caspofungin, and it is only given IV, she was unable to take the Voriconazole, she was allergic to that one too just like Marshall was.
If he tells us that we can go home we will be heading home that afternoon and we will not stop till we reach our house!!!! Other than potty breaks!! We are all sitting on pins and needles. I know that I will need to call and make an appointment with our home hematologist as I know that will be one of the conditions that Dr Wagner will say, yes we can go home as long as we are able to get into see the local hematologist ASAP!
Thanks for all the prayers, we really appreciate them all, please continue to pray for her and that we are able to return home, she is SO ready to be home!
Blessings,
~Kelly
Friday, August 19, 2011
Day +84
We went to clinic this morning to get platelets and we figured she would need red cells due to all the blood clots that she had over night. Surprisingly enough her platelets weren't that bad they were 48 down from 54. I thought the nurse had told me that they were 20 something, but when I got the print out it was higher. Unfortunately her hemoglobin went from 9.1 to 7.4 so we also had to get a dose of red cells too. We were there all day till about 3:30. Fortunately while we were there her urine had cleared up a bit. Through the night last night she had some pretty huge clots in her pullups and yesterday she had two doses of her pain medicine, which is something that she hasn't had in quite a while. Just changed her and it was a beautiful Pyridium orange!! Which I have two favorite colors now....BRIGHT YELLOW P color and PYRIDIUM ORANGE! I remember praying so hard for Marshall to have yellow p and here again I am praying for the same thing...ya know that saying about history repeating itself...well I am living it here. We will go the weekend with out a clinic visit as it really would be to the clinic it would be to the ER as they haven't set up clinic for the weekends yet. So we will go in on Monday to do a CBC and see if she needs anything and if so we will get them done on Monday. We won't see the NP till Tuesday and then on Thursday we will see Dr Wagner. When I sent him an email last night to ask about how long does this generally last this was his response to me:
"What you typically see is that it becomes less and less severe and frequent. It is gradual. Typically completely gone by 3 months after transplant or markedly improved. I have something from the beach for Amelia. John"
Well she has about a week and a half and it will be three months since transplant, so she has a lot of curing to do in that week....I know I'm not holding her to the 3 months, because that is typically and well there is nothing typical about Amelia!!
We are going to ask on Thursday if this will keep us from going home in 3 weeks from today!! and if it does not, will he please call and talk to our local hematologist to make sure they know all about the stupid hemorrhagic cystitis and how to handle it if it should flare up once we get home ( which I pray that it doesn't) I will be a ball of nerves over the next few weeks. I want more than nothing to go home, but at the same time I want the best for my child I want to make sure it is the right thing for her. I worry about her mental health, if we don't get to go home and have to stay too much longer than her time, I think she will get depressed...she just wants to see her dog!! She misses her brothers and dad too...as we both do and it is a lot harder this time to be so spread out from each other!!
Please continue to pray for Amelia that she remain strong and that this HC goes away and stays AWAY!!! That her count continue to rise and stay on the rise, that her mental state stays just as strong as she ever has been! She is one tough cookie and has been through more than her fair share over her life time, but still she doesn't complain she just keeps rolling along with the punches!!
Thanks again for your support and prayers.....I will let you know how she does over the weekend.
Blessings,
~Kelly
"What you typically see is that it becomes less and less severe and frequent. It is gradual. Typically completely gone by 3 months after transplant or markedly improved. I have something from the beach for Amelia. John"
Well she has about a week and a half and it will be three months since transplant, so she has a lot of curing to do in that week....I know I'm not holding her to the 3 months, because that is typically and well there is nothing typical about Amelia!!
We are going to ask on Thursday if this will keep us from going home in 3 weeks from today!! and if it does not, will he please call and talk to our local hematologist to make sure they know all about the stupid hemorrhagic cystitis and how to handle it if it should flare up once we get home ( which I pray that it doesn't) I will be a ball of nerves over the next few weeks. I want more than nothing to go home, but at the same time I want the best for my child I want to make sure it is the right thing for her. I worry about her mental health, if we don't get to go home and have to stay too much longer than her time, I think she will get depressed...she just wants to see her dog!! She misses her brothers and dad too...as we both do and it is a lot harder this time to be so spread out from each other!!
Please continue to pray for Amelia that she remain strong and that this HC goes away and stays AWAY!!! That her count continue to rise and stay on the rise, that her mental state stays just as strong as she ever has been! She is one tough cookie and has been through more than her fair share over her life time, but still she doesn't complain she just keeps rolling along with the punches!!
Thanks again for your support and prayers.....I will let you know how she does over the weekend.
Blessings,
~Kelly
Subscribe to:
Posts (Atom)
