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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 Dec 2004
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acesmuzic | Staff
09-07-2012 at 09:59 AM.
09-07-2012 at 09:59 AM.
Quote from SlickChik :
I'm pretty sure you are allowed to be as whiny as you want!
this

Quote from Thrifteh :
FTR, it is not called whining, it is called decompressing and this is probably the best possible place (in comparison to RL) to do it. hug Chin up and keep moving forward for that sweet baby piglet! We're all behind you with prayers!
and this.

Iagree hug
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Joined Oct 2004
Geek Chick
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someone28624
09-07-2012 at 07:23 PM.
09-07-2012 at 07:23 PM.
PS, I find your avatar so appropriate for a family going through a BMT. Such a hurry up and wait game. Did you change it due to this? Regardless, I think it's very cool.
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Joined Nov 2004
Wuzzy's Best Friend
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Autumn | Staff
09-08-2012 at 12:07 AM.
09-08-2012 at 12:07 AM.
Quote from Pig :
Not home yet...In an apartment that our friend lent us. She needs to be within 10-15 mins drive from the hospital and we live 45 mins away. We will be in this apartment for another 3 months...after which, if everything goes well, she will get to go home. But yeah....A LOT better than being in the hospital.

Ugh..re-read what I just wrote. Not trying to be whiny. Just a bit overwhelmed realizing it a long way to go. The book is not over, just turned a chapter with some more to go.
Good Lord, Pig...you think that was whiny? After all you all have been through and are still going through I think you sound remarkably un-whiny. I'll continue to keep you all in my prayers and I'm so glad that hopefully the worst is over and so proud of your daughter for being such an amazing trooper throughout this whole thing. hug
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Joined Jun 2004
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Original Poster
Pig
09-08-2012 at 06:31 AM.
09-08-2012 at 06:31 AM.
Quote from someone28624 :
PS, I find your avatar so appropriate for a family going through a BMT. Such a hurry up and wait game. Did you change it due to this? Regardless, I think it's very cool.
Yes...

By the way....back at the hospital. She was running a fever yesterday evening so had to take her to the ER and subsequently admit her. Will be here for around 2-3 days unless they find an infection, in which case we may end up being here for 1-2 weeks.....
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Joined Oct 2004
Geek Chick
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someone28624
09-08-2012 at 06:34 AM.
09-08-2012 at 06:34 AM.
Quote from Pig :
Yes...

By the way....back at the hospital. She was running a fever yesterday evening so had to take her to the ER and subsequently admit her. Will be here for around 2-3 days unless they find an infection, in which case we may end up being here for 1-2 weeks.....
Ugh, sorry to hear that. I've found most fevers are just flukes and no reason is ever found.
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TigerStar
09-08-2012 at 06:39 AM.
09-08-2012 at 06:39 AM.
Dang. Thinking of y'all pig
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Joined Jun 2004
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Pig
09-08-2012 at 06:43 AM.
09-08-2012 at 06:43 AM.
Quote from someone28624 :
Ugh, sorry to hear that. I've found most fevers are just flukes and no reason is ever found.
It sure was weird. She was all active and stuff. I was just checked her temperature as a part of the routine and it was 38.4. Was a long night yesterday....
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TigerStar
09-08-2012 at 06:45 AM.
09-08-2012 at 06:45 AM.
Quote from Pig :
It sure was weird. She was all active and stuff. I was just checked her temperature as a part of the routine and it was 38.4. Was a long night yesterday....
38.4? She an iceberg?
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Joined Oct 2004
Geek Chick
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someone28624
09-08-2012 at 06:54 AM.
09-08-2012 at 06:54 AM.
Quote from Pig :
It sure was weird. She was all active and stuff. I was just checked her temperature as a part of the routine and it was 38.4. Was a long night yesterday....
Yep, anything above 38 scores you a bed and a bunch of cultures at my place. I've seen lots of people that feel fine. Often they're the ones that end up being nothing. I think when you take someone's temp every 4 hours for weeks, you're bound to get some outliers.
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Last edited by someone28624 September 8, 2012 at 10:32 AM.
Joined Jun 2004
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Pig
09-08-2012 at 07:44 AM.
09-08-2012 at 07:44 AM.
Quote from TigerStar :
38.4? She an iceberg?
Strange isn't it? Everything is in kg, celcius, ml, etc...once you're with the big guns...

Quote from someone28624 :
Yep, anything above 38 scores you a bed and a bunch of cultures at my place. I've seen lots of people that feel fine. Often they're the ones that end up being nothing. I think wheN you take someone's temp every 4 hours got weeks, you're bound to get some outliers.
Yep, that was a part of the discharge instructions....but we did not expect to be back so soon. We even got the same room laugh out loud
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Last edited by Pig September 8, 2012 at 07:45 AM.
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My name is Walter
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marg_fan
09-08-2012 at 08:10 AM.
09-08-2012 at 08:10 AM.
Comfort
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Joined May 2005
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TigerStar
09-08-2012 at 08:22 AM.
09-08-2012 at 08:22 AM.
Quote from Pig :
Strange isn't it? Everything is in kg, celcius, ml, etc...once you're with the big guns...
More proof the damn Canadians are taking over.


Best of luck to her. This is just a minor hurdle hopefully.
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SlickChik
09-08-2012 at 08:30 AM.
09-08-2012 at 08:30 AM.
hug

Well that is no fun. hug
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AggieMom
09-08-2012 at 10:17 AM.
09-08-2012 at 10:17 AM.
hug Hope she kicks it soon!!
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Piccaboo
09-08-2012 at 12:30 PM.
09-08-2012 at 12:30 PM.
Hang in their Pig, one minor set back is all this is, and she will be back home soon enough.
What tremendous strides have been accomplished at this point in time GroupwaveGroupwave
Your little Piglet is going to be just fine heart

Not whiny as people have said, decompressing after a long series of events, and well entitled to it. Any time here, you know that bounce
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