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Anyone had any friend/family member undergo bone marrow transplant? (Last update...hopefully!)

27,804 541 March 16, 2012 at 10:28 AM in Question
Any experiences to share?

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Last Edited by Pig April 7, 2013 at 08:08 PM
July 16: 2nd round of chemo starts Wednesday, July 18 and will go on for 4 days. She will be hospitalized for this round of chemo. It will knock out a part of her immune system.

We have a friend of ours who have loaned us her house to use for the next few months. We will be taking her there and limiting her exposure to people after this round of chemo to avoid any potential to infection...

She will be out of hospital for 9 days after this round of chemo and will be re-admitted for the next set of chemo on July 31st. Her transplant is currently scheduled for August 9th. She will be in the hospital for around 8 weeks (August, September) and then for 2 months at our friends place after that (October, November).

July 20: Third day in the hospital today. She has gotten almost all side effects/reactions possible over the last two days. Today it has been better so far - probably because of additional pre-meds she has been getting...or/and because her immune system is getting shut down. 5 more hours to go. She's gonna get another stronger dose tomorrow and is scheduled to be discharged on Sunday.

July 24: She was discharged yesterday. She has bounced back pretty well. One cannot tell that she went through 4 days of near-hell looking at her today. She has doctor's appt ever other day until Monday. She gets re-admitted next Tuesday for next sets of chemo, transplant and recovery. (I wonder if anyone is checking this thread....)

July 25: Just got back from the ER around 11:30PM. She had sever pain in the head earlier in the afternoon that lasted for around 15 minutes and it happened again in the evening. The doctor was concerned since and had us get her checked out at the ER. Back home, they did not find anything out of the ordinary.....probably the remnant chemo and the immune system still fighting in there. Hopefully today is an event-free day...

July 29: Last few days have been pretty event free. She has adjusted very well to the apartment she's staying in. Surprising how quickly she has jumped back. Had a follow-up appt on Friday and all the vitals are looking ok. She gets re-admitted on Wednesday...hoping the next 2 days are as good as the last two.

Aug 3: She was re-admitted on Wednesday (Aug 1). Has had 3 days of chemo so far (different drug this time). Doing a lot better with this one. No side effects yet. Has 3 more days of chemo with 3 different drugs by the end of which her immune system should be fully shutdown. So far so good...but getting pretty nervous about the upcoming days. Next Thursday in particular gives me the chills when both the piglets would be in the hospital. Just trying to stay strong for the next 3 weeks in particular

Aug 9: She has been doing pretty ok so far. Has been having some server reactions and symptoms associated with low counts...but has been holding up pretty well. Is active and playful when not drowsy by the benadryls.

Today is the harvest/transplant day. The brother piglet was admitted at 6:00 AM. Was done and ready to be discharged at 11:30 AM. They need to now process the marrow, filter out the red cells, extract the stem cells, etc. Transplant will happen another 6 hours from now.

Update 2: Still waiting on the doctor to come see us. She won't be getting the stem cells today. It will most likely be tomorrow morning when she gets it. They suspect some reactions so want to do it in the morning when everyone's around. uggh.

Aug 10: The doctors were pretty nervous about some of the things (will leave aside the details) and had done a lot of prep in case of any reactions from the transfusion. However, they did not have to use any of the stuff that they had on standby. As of today, she has received her brother's stem cells!

Aug 13: Things are very good so far. The hair is slowly starting to fall. She will probably lose all her hair in the next week. All the counts/stats check out fine. The wait continues on...for the next 2-3 weeks.

Aug 18:


Aug 24:
She's been doing pretty good so far. She's lost almost all her hair but she's not conscious about it. In fact she likes the soft head of hair. No complains of pain, no infection, still eating/drinking. We's on a wait mode now...tick tock tick tock...for the engraftment and the counts to start going up...

Aug 28:
Her counts are really starting to go up. They are nudging higher every passing day. No signs of GVH so far either. Doc said if she continues with the current progress, she may be discharged by end of next week....or earlier! They are already starting to prep her for discharge. She currently has anywhere between 5 and 8 tubes of various meds/fluids connected to her at all times. They are slowly weaning her down on them and switching to oral med in prep to say bye bye!

Sept 1:
Almost there. All her meds are oral now....and it's a LOT! Around 8 meds in the morning, 3 in the afternoon and 3 at night...and most of them will continue for a few weeks/months. Her key counts are in the normal range. Most likely will be discharged on Tuesday or Wednesday. Looking forward to getting out of this place...but at the same time apprehensive to leave this protective environment and be on our own.

Sept 5:
Yay! Discharged!! Now at an apartment close to the hospital that our friend lent us. Will need to be here for another 2-3 months, while she regains her immunity, frequency of transfusions, clinic visits etc. wean off.


Sept 8:
Back at the hospital. Had a fever yesterday night. Called doc, went to ER, had her blood cultures drawn, got admitted...Will be here for the next 2-3 days as long as they don't find anything in her blood cultures...

Sept 10:
Uggh. Had a fever early morning today that lasted an hour. An hour of fever that translates to another couple of days in the hospital. Well, at least the good thing is that we were still in the hospital. Would have sucked 100x more if we had gone home and the fever had spiked later today. Oh well, have to stay under observation at least until Wednesday. Still no sign of any infection/etc (Which kinda sucks...because we don't know what's causing the intermittent fever).

Sept 12:
Still at the hospital. The docs still don't know what caused the fevers so they are nervous about it. She has been afebrile for the last 24 hours. If this continues for the next 24 hours, we may get to go home.....

Sept 13:
Back to the apartment again! Hoping to stay here here for the next couple of months without having to see that hospital again. Clinic visits will most likely be three times a week for the next couple of weeks and then taper down to twice a week. Fingers crossed....

Nov 28:
She has been home for little over a month now and has been doing really good. Her counts have been very stable and looking great. She still is on a bunch of meds and will most likely continue on them for another few months. We still need to limit her exposure to people/germs, take all the precautions (mask outside the house, etc.).

Things have been crazy though...crazy at work, crazy at home, no place in between. Need a break soon!

Feb 17:
Her blood type finally changed this week...from her to her brother's! It was a huge milestone that we have been waiting on for a while now. It was making me nervous for a few weeks now - the counts sliding and the blood type switchover being overdue. But the counts regained over the last couple of weeks and have stayed stable.

Apr 5:
Back in the hospital again Frown Frown 2nd day here now. Was admitted because of stomach flu symptoms getting worse but it's turning out to be a lot more complicated than that. Pretty concerned about her. Ugggggggh.

Apr 7:
Back home after a 4 day stay. Was quite a scary experience, especially the way her health deteriorated from normal to really bad in a matter of hours. If you see her now, you wouldn't say she was the way she was a couple of days back....

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Joined Oct 2004
Geek Chick
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someone28624
07-25-2012 at 03:59 AM.
07-25-2012 at 03:59 AM.
Quote from Pig :
She was on Campath. She is following this protocol [clinicaltrials.gov]
That's the longest conditioning regimen I've ever seen. Don't you just hate the term "reduced intensity?" I have yet to see a chemo that doesn't suck. Hoping you're enjoying a few relaxing days as a family before you start up again. hug
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Joined Jul 2006
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RugratsGalore
07-25-2012 at 04:16 AM.
07-25-2012 at 04:16 AM.
Keeping you and your daughter in my thoughts and prayers. I hope her transplant is as easy as possible on her little body.

My friend's daughter just had her transplant on July 19th (she is 20 years old.) It is tough but they are doing a good job of keeping her comfortable. She is sleeping most of the day, which is a great thing.
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Joined Oct 2007
No.
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damsel.
07-25-2012 at 04:27 AM.
07-25-2012 at 04:27 AM.
I'm just seeing this thread now. I don't have much to say, but hug
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Joined Dec 2004
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acesmuzic | Staff
07-25-2012 at 07:07 AM.
07-25-2012 at 07:07 AM.
your little one is such a trooper. i'm glad to hear she seems to have bounced back from the most recent round so quickly hug
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Joined Dec 2004
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Schooby
07-25-2012 at 07:11 AM.
07-25-2012 at 07:11 AM.
Happy to hear she is feeling alright after and is bouncing back to her usual self Smilie Sorry to hear it was so rough on her for those days Frown Lots of Prayers your way hug

damn..just read your update...poor little piglet Frown I hope the headaches are done now.
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Joined Jan 2006
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AggieMom
07-25-2012 at 07:18 AM.
07-25-2012 at 07:18 AM.
Quote from Pig :
Thank you everyone for your support. I have not been talking much to anyone these days, so it feels good to come here once a while and post updates and to know that I have you wonderful folks to lean on, talk to and may be even ask for help if I ever need to.


Grouphug
Say the word. hug
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Joined Nov 2005
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SlickChik
07-25-2012 at 08:05 AM.
07-25-2012 at 08:05 AM.
Quote from Pig :
Thank you everyone for your support. I have not been talking much to anyone these days, so it feels good to come here once a while and post updates and to know that I have you wonderful folks to lean on, talk to and may be even ask for help if I ever need to.

We actually just got back from the ER about an hr back. She had sever pain in the head earlier in the afternoon that lasted for around 15 minutes and it happened again in the evening. The doctor was concerned since and had us get her checked out at the ER. Back home, they did not find anything out of the ordinary.....probably the remnant chemo and the immune system still fighting in there.


Grouphug

That must be scary! Frown I'm glad she is okay. You have permission to post in here as much as you want! You are allowed to whine, bitch, and rant here as well! Smilie hug
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Joined Aug 2006
proud 2b southern
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jenni.
07-25-2012 at 11:24 AM.
07-25-2012 at 11:24 AM.
Like I told you, I am checking this thread. It's pinned and I am watching. I just wasn't sure if you wanted it bumped or not. You're all in my prayers. hug
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Joined Jun 2003
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lowpro
07-25-2012 at 12:22 PM.
07-25-2012 at 12:22 PM.
hug
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Boating
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Piccaboo
07-25-2012 at 01:00 PM.
07-25-2012 at 01:00 PM.
Yes, we are checking this thread and saying Prayer's for both the little piglet and your entire family hug
What you are all going through is tremendous and there is no reason for you not to post in here, feel free to do so. I know from my own experience what support I got from people heart and there are some pretty amazing folks here in this SD Community that are praying for your little girl and your entire family.

As others have said, rant, bitch, whine, ask questions, ask for help; whatever you need to do; people are here for you Hug2
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Joined Oct 2004
Geek Chick
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someone28624
07-25-2012 at 06:41 PM.
07-25-2012 at 06:41 PM.
So sorry to hear you had to go to the ER! I'm glad they didn't find anything serious, though. Hoping it doesn't happen again!
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Original Poster
Pig
07-25-2012 at 07:00 PM.
07-25-2012 at 07:00 PM.
Quote from someone28624 :
So sorry to hear you had to go to the ER! I'm glad they didn't find anything serious, though. Hoping it doesn't happen again!
I hope so too...

I forgot to mention in the wiki. I wore my SD T-Shirt to the ER yesterday.....but I doubt I would be getting a Slick Deal on the ER bill laugh out loud
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Joined Jun 2004
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Original Poster
Pig
07-25-2012 at 07:02 PM.
07-25-2012 at 07:02 PM.
Thanks for the support everyone. I'm not replying individually to your posts but I've read all of them and when I feel down I sometimes come here and re-read them (and some of your PMs) again. (If you need individual replies, go to Pig is Awesome thread....I will whore away there laugh out loud)

Last week was sort of a reality check. It made us realize that it's a long road ahead....
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Joined Nov 2005
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SlickChik
07-25-2012 at 08:51 PM.
07-25-2012 at 08:51 PM.
Quote from Pig :
Thanks for the support everyone. I'm not replying individually to your posts but I've read all of them and when I feel down I sometimes come here and re-read them (and some of your PMs) again. (If you need individual replies, go to Pig is Awesome thread....I will whore away there laugh out loud)

Last week was sort of a reality check. It made us realize that it's a long road ahead....
hug


When you'd like to escape reality, come join us here. laugh out loud
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Life = YMMV
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teenbean
07-30-2012 at 08:43 PM.
07-30-2012 at 08:43 PM.
Your family is in my thoughts and prayers.
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