New thread for DaddysGirl/fathers SCT discussion

I started this new discussion for DaddysGirl. The old thread was getting too hard to pull up. Here is her last post concerning her father. Love...Sue (FNHL-2-3a-6/10)

July 3, 2012 - 1:25pm
DaddysGirl...
going to keep it short I

going to keep it short I appreciate all the messages above VERY VERY much and all the thoughts and prayers along with it... I read the messages to my Dad and family and it gives us comfort knowing you are all there with us... Dad had a very tough time today stem cell infusion.. he had 8 syringes, first 5 was no problem, 6th started to get chest discomfort, throat discomfort heaviness... cramping diarhea with 6th they had to give him in the bathroom, blood pressure went way up over 200s shaking so bad they couldn't measure blood pressure even manually... they administered some medicine through iv to stop shaking along with other medications, then started throwing up, coughing... it was terrible I couldn't watch him the whole time had to leave the room didn't want to have my anxiety effect others... mom left at one point too and couldn't go back in... it was so scary... they held on the 8th shringe for about 5 1/2 hrs later... it was the dsmo chemical the stem cells were stored with... he had too many bags so too much of dsmo... he did well with the last syringe... no reaction... what's important is for others anyone going through it is to tell the SMALLEST bid of reaction they feel so they can give breaks in between bags... I'm glad it's over... he has no apetite at the moment... again thank you very much for all the notes and everything... not sure of how to start a new thread can't think at the moment... unless someone else wants to start it for me...
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Comments

  • allmost60
    allmost60 Member Posts: 3,178
    Bumping up
    Just keeping this bumped up for DaddysGirl....
  • onlytoday
    onlytoday Member Posts: 609 Member
    Daddy's Girl
    Hi,

    Hey Sue thanks for starting this new thread!

    Daddy's Girl, so sorry your Dad had such a difficult time.I've been reading all of your posts-you are one great daughter!! Hopefully this will just get better now and he'll have some easier days! Praying for your Dad and Mom and you that this gets easier and you can all get a break!

    Hugs,
    Donna
  • anliperez915
    anliperez915 Member Posts: 770
    Hi DadysGirl
    Hi DadysGirl,
    Sorry to hear that your dad had a rough time, man those are the things that scare the heck out of me (hope I never have to go through them). Thinking of you and your dad, will continue to pray for him!
    We are with you Sweetie, hang in there! (((Hugs)))

    Sincerely,
    Liz
  • DadysGirl
    DadysGirl Member Posts: 346

    Hi DadysGirl
    Hi DadysGirl,
    Sorry to hear that your dad had a rough time, man those are the things that scare the heck out of me (hope I never have to go through them). Thinking of you and your dad, will continue to pray for him!
    We are with you Sweetie, hang in there! (((Hugs)))

    Sincerely,
    Liz

    You are all so great but I
    You are all so great but I feel so drained with what happened today especially when there was no warning... You all are so caring sweet and kind and always say the most comforting things that I don't know how to say thank you... English is also not my mother tongue, but I feel very touched with all you taking the time to write... all I can do is pray for each of you... and I do with such heartfelt emotions... may all of our prayers be accepted so we can all have long healthy lives with our loved ones... love to all of you... Mike, I truly don't know and also I did read today there is a limit as to how much of that chemical can be administered during infusion... Dad was doing well until the 6th bag and then suddenly it all went downhill from that point onward...I'm glad you didn't have to go through that... I will say good night to you all for now... I'm here staying with Dad at the hospital and we'll keep you posted tomorrow morning...
    Take care everyone with lots of love to all...
  • jimwins
    jimwins Member Posts: 2,107
    DadysGirl said:

    You are all so great but I
    You are all so great but I feel so drained with what happened today especially when there was no warning... You all are so caring sweet and kind and always say the most comforting things that I don't know how to say thank you... English is also not my mother tongue, but I feel very touched with all you taking the time to write... all I can do is pray for each of you... and I do with such heartfelt emotions... may all of our prayers be accepted so we can all have long healthy lives with our loved ones... love to all of you... Mike, I truly don't know and also I did read today there is a limit as to how much of that chemical can be administered during infusion... Dad was doing well until the 6th bag and then suddenly it all went downhill from that point onward...I'm glad you didn't have to go through that... I will say good night to you all for now... I'm here staying with Dad at the hospital and we'll keep you posted tomorrow morning...
    Take care everyone with lots of love to all...

    Hope today brings improvement
    Hey Daddy's Girl,

    Thanks for updating. Sorry your Dad is having a hard time of it.
    Hopefully they will be able to tweak things so it will go more smoothly.

    I hope today brings improvement! Try to take a little time for yourself
    and do something normal. I know it's hard but you need to take care of
    yourself too :).

    Hugs,

    Jim
  • coachmike
    coachmike Member Posts: 155
    jimwins said:

    Hope today brings improvement
    Hey Daddy's Girl,

    Thanks for updating. Sorry your Dad is having a hard time of it.
    Hopefully they will be able to tweak things so it will go more smoothly.

    I hope today brings improvement! Try to take a little time for yourself
    and do something normal. I know it's hard but you need to take care of
    yourself too :).

    Hugs,

    Jim

    Still praying for you and
    Still praying for you and your family
  • DadysGirl
    DadysGirl Member Posts: 346
    coachmike said:

    Still praying for you and
    Still praying for you and your family

    thank you Sue for the
    thank you Sue for the thread, thank you Donna Liz, Mike and Jim. We appreciate it very much... Dad has no apetite yesterday hardly ate anything after the stem cell infusion. Today had some breakfast, for some reason just wants to have some vegetables and that's it even that he is forcing himself to eat... The oxygen yesterday I guess dried up his nostril so has bloody post nasal which comes out as blood they are measuring how much is coming out... These are small things I guess... He does feel weak and doctor said your body went through a lot yesterday it is normal, it will get better but first it will get bad than better... we'll write again later gotta go ... continue later...
  • anliperez915
    anliperez915 Member Posts: 770
    DadysGirl said:

    thank you Sue for the
    thank you Sue for the thread, thank you Donna Liz, Mike and Jim. We appreciate it very much... Dad has no apetite yesterday hardly ate anything after the stem cell infusion. Today had some breakfast, for some reason just wants to have some vegetables and that's it even that he is forcing himself to eat... The oxygen yesterday I guess dried up his nostril so has bloody post nasal which comes out as blood they are measuring how much is coming out... These are small things I guess... He does feel weak and doctor said your body went through a lot yesterday it is normal, it will get better but first it will get bad than better... we'll write again later gotta go ... continue later...

    Hi DadysGirl
    Hi DadysGirl,
    Thank you for the updates,
    Hang in there sweetie, I will continue to keep you and your dad in my prayers!
    Take care (((Hugs)))

    Sincerely,
    Liz
  • allmost60
    allmost60 Member Posts: 3,178
    DadysGirl said:

    thank you Sue for the
    thank you Sue for the thread, thank you Donna Liz, Mike and Jim. We appreciate it very much... Dad has no apetite yesterday hardly ate anything after the stem cell infusion. Today had some breakfast, for some reason just wants to have some vegetables and that's it even that he is forcing himself to eat... The oxygen yesterday I guess dried up his nostril so has bloody post nasal which comes out as blood they are measuring how much is coming out... These are small things I guess... He does feel weak and doctor said your body went through a lot yesterday it is normal, it will get better but first it will get bad than better... we'll write again later gotta go ... continue later...

    Your very welcome...
    Hi,
    No problem doing the new thread for you. Even if your dad only eats a little, it's better than nothing at all. Listen to the doctor and try to remember that things will eventually get better...it just takes time.Maybe putting a little vaseline in your dads nose will help with the dryness. Keep us posted and hang in there. Love...Sue
    (FNHL-2-3A-6/10)
  • diazr1
    diazr1 Member Posts: 101
    allmost60 said:

    Your very welcome...
    Hi,
    No problem doing the new thread for you. Even if your dad only eats a little, it's better than nothing at all. Listen to the doctor and try to remember that things will eventually get better...it just takes time.Maybe putting a little vaseline in your dads nose will help with the dryness. Keep us posted and hang in there. Love...Sue
    (FNHL-2-3A-6/10)

    Ensure or Boost
    Feed him those chilled it works . Sorry everyone for being a short sentence guy
  • anliperez915
    anliperez915 Member Posts: 770
    diazr1 said:

    Ensure or Boost
    Feed him those chilled it works . Sorry everyone for being a short sentence guy

    Hi Diaz
    Hi Diaz,
    How are you feeling? Please let us know.
    Keeping you in my prayers! Sending you positive thoughts!
    Take care

    Sincerely,
    Liz
  • diazr1
    diazr1 Member Posts: 101

    Hi Diaz
    Hi Diaz,
    How are you feeling? Please let us know.
    Keeping you in my prayers! Sending you positive thoughts!
    Take care

    Sincerely,
    Liz

    Hospitalized
    Hot pneumonia and a chemo secondary lung issue that gives me shortness of breathe that I treat with prednisone
  • anliperez915
    anliperez915 Member Posts: 770
    diazr1 said:

    Hospitalized
    Hot pneumonia and a chemo secondary lung issue that gives me shortness of breathe that I treat with prednisone

    Sorry to hear
    Sorry to hear that you're in the hospital, man I know how painful pneumonia can be...I got it this Jan.
    Hope you get better soon, the hospital is the best place to be when dealing with that type of illness. The dr's. and nurses will get you better just hang in there buddy. Take care, I will be keeping you in my prayers. (((Hugs)))

    Sincerely,
    Liz
  • DadysGirl
    DadysGirl Member Posts: 346

    Sorry to hear
    Sorry to hear that you're in the hospital, man I know how painful pneumonia can be...I got it this Jan.
    Hope you get better soon, the hospital is the best place to be when dealing with that type of illness. The dr's. and nurses will get you better just hang in there buddy. Take care, I will be keeping you in my prayers. (((Hugs)))

    Sincerely,
    Liz

    Thank you again for the
    Thank you again for the suggestions... Dad is ok weak, blood pressure elevated, blood pressure was so good except during that awful day not sure what's causing it to be high... 160s / 90s 100s, no appetite, spitting out blood most likely post nasal drainage and accumulation in throat... Has a bad rash that started last day of chemo after melphalen... Initially doctor thought maybe shingles, but now it's throughout the whole body very bothersome... Itchy... Liver biliburin elevated but not more than during chemo times they said i'm so glad it's stable... Wondered if sodium nasal spray or mouth rinse may elevate pressure nurses didn't think so... He wants to only eat vegs and vegs limited in hosp food so plan to cook some vegs freeze and bring him next day from now on... This morning he ate his oatmeal and Thomas English muffin plain this was a very good meal he had considering last few days since infusion of stem cells... Lunch only the corn, but still ok since he had good breakfast... Also has nausea on and off... He showers everyday mom helps him out, they stopped the after shower wipes just in case reaction with rashes to that, we also brought his own soap to use.. The sct units head nurse said she has never seen this rash before and she's been here since they opened up over 20 + yrs... Doctor wondered if it was to all the antibiotics they got him on... But nothing definite... We are fine with all this thanking God for today and wishing at the end everything will be fine and hopefully my Dad will get cured along with all of you and all of other cancer patients and anyone dealing with any illnesses... WBC count 4.9 to 1.8 yest. To 0.3 today... Hct 25.6 may need more transfusion tomorrow or next day, platelets from 40 yest to 31 today... We are at day +3. So far no fever thank God...
    Mike how are you doing? When will they do petscan at 3 months? We are praying for you and others...
    Diazr I'm sorry about your pneumonia and difficult days, you are also in our prayers... We hope you will feel better soon and things will get much better for you.
    Take care everyone, and thank you so much for thinking and praying for us...
  • coachmike
    coachmike Member Posts: 155
    DadysGirl said:

    Thank you again for the
    Thank you again for the suggestions... Dad is ok weak, blood pressure elevated, blood pressure was so good except during that awful day not sure what's causing it to be high... 160s / 90s 100s, no appetite, spitting out blood most likely post nasal drainage and accumulation in throat... Has a bad rash that started last day of chemo after melphalen... Initially doctor thought maybe shingles, but now it's throughout the whole body very bothersome... Itchy... Liver biliburin elevated but not more than during chemo times they said i'm so glad it's stable... Wondered if sodium nasal spray or mouth rinse may elevate pressure nurses didn't think so... He wants to only eat vegs and vegs limited in hosp food so plan to cook some vegs freeze and bring him next day from now on... This morning he ate his oatmeal and Thomas English muffin plain this was a very good meal he had considering last few days since infusion of stem cells... Lunch only the corn, but still ok since he had good breakfast... Also has nausea on and off... He showers everyday mom helps him out, they stopped the after shower wipes just in case reaction with rashes to that, we also brought his own soap to use.. The sct units head nurse said she has never seen this rash before and she's been here since they opened up over 20 + yrs... Doctor wondered if it was to all the antibiotics they got him on... But nothing definite... We are fine with all this thanking God for today and wishing at the end everything will be fine and hopefully my Dad will get cured along with all of you and all of other cancer patients and anyone dealing with any illnesses... WBC count 4.9 to 1.8 yest. To 0.3 today... Hct 25.6 may need more transfusion tomorrow or next day, platelets from 40 yest to 31 today... We are at day +3. So far no fever thank God...
    Mike how are you doing? When will they do petscan at 3 months? We are praying for you and others...
    Diazr I'm sorry about your pneumonia and difficult days, you are also in our prayers... We hope you will feel better soon and things will get much better for you.
    Take care everyone, and thank you so much for thinking and praying for us...

    Im sorry your dad has had
    Im sorry your dad has had these rashes and I do hope that its a quick fix for him. Dont let the counts scare you, they are going to bottom out, thats what we want...means that the chemo is working. The appetite will get better too.
    Im doing well. I went in to clinic yeserday to get labs and all me labs are good. My hemaglobin and plateltes all rose. My White blood cells had a dip but they said thats normal when you stop taking the growth factor. So they should go back up soon. They are so happy with my counts that they gave me the weekend off from coming in and i dont have to go back til monday. But i feel good actually. I am very blessed to not have lingering side effects.
    I continue to pray for you all
  • DadysGirl
    DadysGirl Member Posts: 346
    coachmike said:

    Im sorry your dad has had
    Im sorry your dad has had these rashes and I do hope that its a quick fix for him. Dont let the counts scare you, they are going to bottom out, thats what we want...means that the chemo is working. The appetite will get better too.
    Im doing well. I went in to clinic yeserday to get labs and all me labs are good. My hemaglobin and plateltes all rose. My White blood cells had a dip but they said thats normal when you stop taking the growth factor. So they should go back up soon. They are so happy with my counts that they gave me the weekend off from coming in and i dont have to go back til monday. But i feel good actually. I am very blessed to not have lingering side effects.
    I continue to pray for you all

    Enjoy the weekend Mike...
    Enjoy the weekend Mike... Hopefully wbc will climb back up again...
    For us, Today is day +4 WBC 0.1 hct 24.5 platelets 21
    He is weak esp. After shower... No apetite had vegs broccoli cauliflower last night lunch just corn kernels... Then he had this plain baked good with walnuts in it salty not sweet size of palm of hand flat bread like that we brought from home around 10pm so it made us happy... Even that he ate so doesn't have complications after a lecture from nurse... We got up walked 3am 40 laps make a mile we did 15 laps... He also did that breathing thing not sure what it's called... Took another walk around 7am didn't count most likely about 20 and another one about 15 laps... Now he is extremely tired but important to not get pneumonia esp. With an individual that has heart problems heart attack in past etc... They gave steroid cream last night which helped with itching... It's not as bad and the rash in the leg area looks like going from inflamed to like drying out type rash... The rest still looks inflamed but it's ok as long as we don't get the bad complications... He lost 10 lbs... Nurse said usually pp don't loose to this point... Because of fluids too... He was gaining 18-20 lbs during rice treatment which was just fluid...
    His liver is a worry for vod so if he doesn't keep water it'd be good.. Also not good with heart too..
    His throat started hurting last night... This morning all his teeth hurt he says... The down days are here but lets pray for no complications and hopefully he can move around little bit so it helps his recovery... He also had diarrhea yest afternoon but this morning it's okay... I recall Mike having a similar short case... Hoping for clean news from everyone and my dad as well and praying for that..
  • coachmike
    coachmike Member Posts: 155
    DadysGirl said:

    Enjoy the weekend Mike...
    Enjoy the weekend Mike... Hopefully wbc will climb back up again...
    For us, Today is day +4 WBC 0.1 hct 24.5 platelets 21
    He is weak esp. After shower... No apetite had vegs broccoli cauliflower last night lunch just corn kernels... Then he had this plain baked good with walnuts in it salty not sweet size of palm of hand flat bread like that we brought from home around 10pm so it made us happy... Even that he ate so doesn't have complications after a lecture from nurse... We got up walked 3am 40 laps make a mile we did 15 laps... He also did that breathing thing not sure what it's called... Took another walk around 7am didn't count most likely about 20 and another one about 15 laps... Now he is extremely tired but important to not get pneumonia esp. With an individual that has heart problems heart attack in past etc... They gave steroid cream last night which helped with itching... It's not as bad and the rash in the leg area looks like going from inflamed to like drying out type rash... The rest still looks inflamed but it's ok as long as we don't get the bad complications... He lost 10 lbs... Nurse said usually pp don't loose to this point... Because of fluids too... He was gaining 18-20 lbs during rice treatment which was just fluid...
    His liver is a worry for vod so if he doesn't keep water it'd be good.. Also not good with heart too..
    His throat started hurting last night... This morning all his teeth hurt he says... The down days are here but lets pray for no complications and hopefully he can move around little bit so it helps his recovery... He also had diarrhea yest afternoon but this morning it's okay... I recall Mike having a similar short case... Hoping for clean news from everyone and my dad as well and praying for that..

    I did have two days of
    I did have two days of diareha and then it was gone. The walking is great for him, i walked as much as possibly could. At day +4 they started giving me growth factors to raise my WBCs, are they starting that for him soon?
  • anliperez915
    anliperez915 Member Posts: 770
    DadysGirl said:

    Enjoy the weekend Mike...
    Enjoy the weekend Mike... Hopefully wbc will climb back up again...
    For us, Today is day +4 WBC 0.1 hct 24.5 platelets 21
    He is weak esp. After shower... No apetite had vegs broccoli cauliflower last night lunch just corn kernels... Then he had this plain baked good with walnuts in it salty not sweet size of palm of hand flat bread like that we brought from home around 10pm so it made us happy... Even that he ate so doesn't have complications after a lecture from nurse... We got up walked 3am 40 laps make a mile we did 15 laps... He also did that breathing thing not sure what it's called... Took another walk around 7am didn't count most likely about 20 and another one about 15 laps... Now he is extremely tired but important to not get pneumonia esp. With an individual that has heart problems heart attack in past etc... They gave steroid cream last night which helped with itching... It's not as bad and the rash in the leg area looks like going from inflamed to like drying out type rash... The rest still looks inflamed but it's ok as long as we don't get the bad complications... He lost 10 lbs... Nurse said usually pp don't loose to this point... Because of fluids too... He was gaining 18-20 lbs during rice treatment which was just fluid...
    His liver is a worry for vod so if he doesn't keep water it'd be good.. Also not good with heart too..
    His throat started hurting last night... This morning all his teeth hurt he says... The down days are here but lets pray for no complications and hopefully he can move around little bit so it helps his recovery... He also had diarrhea yest afternoon but this morning it's okay... I recall Mike having a similar short case... Hoping for clean news from everyone and my dad as well and praying for that..

    Hi DadysGirl
    Hi DadysGirl,
    I was wondering how your dad was doing today?
    Thinking of you and your dad.

    Sincerely,
    Liz
  • DadysGirl
    DadysGirl Member Posts: 346

    Hi DadysGirl
    Hi DadysGirl,
    I was wondering how your dad was doing today?
    Thinking of you and your dad.

    Sincerely,
    Liz

    Thanks Liz... He is ok a lot
    Thanks Liz... He is ok a lot of nausea even with Iv zofran he may get something stronger... He fights it a little bit... Body rash is less itchy... Had all his teeth hurt 4am had to get pain meds... Still walking even though gets completely drained after and sleeps... I think the walking is helping him... Sometime we are walking back and forth in this small units hallway max 6 patients only in the unit... At 3, 5 in the morning we are walking... All the nurses are great...staff is wonderful... Had more platelets but probably will get more tonight after blood work as its at 16 and less than 16 need more.. Was down to 9 last evening...WBC remains at < 0.1
    Mike they start the neuphrogen on day +5 here so yesterday and as I write they're giving him the second one...how are you doing Mike? He is pretty nauseated let me go ... Thank you again for asking and thinking of my Dad Liz... Hugs...
  • coachmike
    coachmike Member Posts: 155
    DadysGirl said:

    Thanks Liz... He is ok a lot
    Thanks Liz... He is ok a lot of nausea even with Iv zofran he may get something stronger... He fights it a little bit... Body rash is less itchy... Had all his teeth hurt 4am had to get pain meds... Still walking even though gets completely drained after and sleeps... I think the walking is helping him... Sometime we are walking back and forth in this small units hallway max 6 patients only in the unit... At 3, 5 in the morning we are walking... All the nurses are great...staff is wonderful... Had more platelets but probably will get more tonight after blood work as its at 16 and less than 16 need more.. Was down to 9 last evening...WBC remains at < 0.1
    Mike they start the neuphrogen on day +5 here so yesterday and as I write they're giving him the second one...how are you doing Mike? He is pretty nauseated let me go ... Thank you again for asking and thinking of my Dad Liz... Hugs...

    The walking will definitely
    The walking will definitely make him recover faster, i am firm believer in that. I went into my treatment with a mentality of "im not a sick person, rather im a person that has a sickness". I refused to lie in the bed and pity myself, so it was important for me to try and walk as much as I could.
    Im doing very good I have to say. I left the clinic today and all my levels haave risen more. Ive not had to have any replinishments so they have scheduled the removal of my hickman line on friday morning. Im so ready to see the water hoses (as i call them) leave my chest! I havent really ventured out much but I think im gonna go to a shop with my mom tomorrow when they are not busy and just get out for a little bit. I think that mentally you have to get out sometime so you dont feel like an involent in your home. Does anyone else have any thoughts are advice on venturing out after a tranplant.
    I continue to pray for your dad and uplift him to The Healer