Day + 7 BMT 27 year old daughter

[amyangel]

Hi everyone !
We are Day + 7 and still going pretty good . We are thankful that the day hospital offers a little lunch if you want one ... Amy has eaten a turkey sandwich since Oct 1 everyday !! lol

I think she thinks if she eats she is going to feel better even when shes not feeling well . She is still drinking pretty good too !!

Dr. Hari came into the room today and said , This next few days are going to be her really bad days ... and yes today seemed like it was one of those bad day she just couldn't seem to get comfortable benadryl didn't put her to sleep today.

Because Amy is taking phenobarbital for her seizure it messes with her pro-graft levels so we are having to beef up the levels she is receiving it in an IV forum to make sure she gets enough and we are also taking it at our apartment home lol in the evening . FK level was 4.9 today yahoo getting closer to what he would like to see .

Amy has also become allergic to pro- graft and we are having to give benadryl to help with the hives seems to be working so far ..

She also get IVIG treatments once a week .
Since this has all started she has on had to have 4 units of blood so far .

She has a little cough and they are calling it chemo cough. for those of you who have been through a BMT/SCT you know what i'm talking about that thick junk in the back of the throat .

Her body aches and maybe seems a little more tired but doesn't nap I guess that's the youth in her .

Just wanted you all to know how our day + 7 was going thanks to our fantastic team of Doctors and nurses and all praise to the Lord !
Thank you to every single one of you who are rooting and praying for us THANK YOU !
Sue and Amy

[Neil Cuadra]

Sue,

If the doctor is right about "a few bad days" then keep thinking how, in a matter of days, it'll start getting easier for Amy. For most days, today will be better than yesterday.

Amy's medical progress sounds good. That she's eating solid food this first week really impresses me. (My wife couldn't eat solid food for many weeks after her transplant.) No matter what she feels up to eating or drinking, it will help her regain her strength and some sense of normalcy. Don't worry if she has peculiar food preferences, and don't worry if there's a bad day when she can't manage eating. It's the overall progress that matters. So far so good!

Drug allergies and the need for other medicines (e.g., the phenobarbital) complicate matters, but that's where the doctor's experience and knowledge pay off. Good luck in the coming days.

[amyangel]

Thanks Neil Cuadra,
I think she is doing great too ... Thank you for the chin up !!

We all talked about the beauty of Amy not understanding everything because of her cognitive disability seems to be a little in her favor also . She only has to worry about getting better everything else falls on me .... Like house cleaning , cooking, paying bills, she doesn't have to worry about her job because we know it will be there for her when she is better . ect . you know ?

And I know she might have bad days and that's ok today we thought was one of those days ,but she still ate for me anyway .. I have to say staying in an apartment feels much more like home and better for her ...

We have done out patient from day 1 we just report to the Day hospital every day. and we will stay in the apartment for 100 days ... very close to the hospital .

[DanL]

Sue,

This sounds like a pretty positive progress report. No transplant happens without hiccups or obstacles in the road. I was in the hospital for about 30 days from beginning to end, and am pretty jealous of the people that are able to go home to an apartment and not have the nurses checking in on you every 4 hours interrupting sleep.

The medication issues, as Neil stated, is where the doctors earn their living. I have had several changes over the past few months due to drug reactions or undesired side effects, but we keep working at it and continue to find combinations that work for me.

Continued best wishes going forward!

[amyangel]

Hi Dan Thank you ... we have just continued to give her benadryl and it seems to be working !!! also great new we finally got her Pro-graft level to 9.7 Doc Hari did a little dance and so did we !!

Less time at the hospital today it was wonderful to get back to the apartment at a nice time !!

Blood Amy got yesterday gave her a good bump !!
Platelets did drop to 47 so now we can stop the Lovenox shots all together YIPPIE SKIPPY !!

Amy has had a Turkey sandwich everyday since we have started !! that makes 15 turkey sandwiches !!!

HAPPY DAY + 8 ! THANK YOU LORD FOR SENDING YOUR ANGELS

PRAYERS FOR EVERYONE IN THIS GROUP !!

[amyangel]

Hi all HAPPY DAY+9
Amy had a pretty good day today !
her body seems to be slowing down just a little still eating and drink which makes everyone happy .

Platelets dropped to 30 today so maybe tomorrow she will need replacement of platelets

Doc is giving her NEUPOGEN (filgrastim) shots to help the New baby cells out a bit and to protect her body I'm not sure how many days yet .

She even gained a little weight !!

Things we needed today Pro-graft IV Level dropped a little but still in range 8.7

Mag. only 1.3 Pro-graft makes your mag drop she needed 3 units
over all a pretty good day !
Prayers that the Lord continues to bless every single one of you in this group and heal and touch your bodies !

Thank you Jesus !

[amyangel]

Hi Everyone ,
Amy's day + 10 went very well and she is still eating and drinking !
She needed platelets
PRO-GRAFT IV
mag and fluid 6 grams wow
neprogen shot

over all the Dr. are very please with how things are going . Body aches belly hurts a little mostly gas .
Thank you Jesus !

Day + 11
Amy got her last day of Methotrexate now soon this awful chemo thick cough will go away. still has a good head of hair on head .
Platelets
mag pro-graft IV
fluids
neprogen shot
Amy is still eating and drinking and still tell me her body hurts
Good Day


Day + 12 Amy is starting to feel the new cells and the neprogen shot.

Today she only needs
MAG 6 GRAMS
AND PRO-GRAFT
neprogen shot
FLUID
Feeling a little more aches and I was told it could be also coming from the neprogen shot too .. still eating and she still has hair on her head !!

God Bless all of you that have been Praying for her !

[Cheryl C]

God bless you and Amy too. You are a wonderful Mum.

[amyangel]

Hi everyone !
First of all I would like to give praise to my heavenly Father for protecting Amy and for guiding Amy's Team of Doctors.

We thank all of you for reading and and encouraging us you all have given us great hope !

Amy is doing amazing well so far after being as sick as she was in Feb. I even think the Doctors are amazed ... Her Dr. does a white cell dance !!! lol

Day + 13 was Mag and Platelets and Neutrophil !!!! neprogen shot
Day +14 was Mag and Platelets and making more neutrophil !!! and a neprogen shot .

day + 15 Mag 6 grams Platelets IVIG and making even more neutrophil she got another neprogen shot .

Day + 16 we only needed MAG 6 GRAMS SIX HOURS IN THE DAY HOSPITAL .
Neprogen shot and a little higher dose . neutrophil .34

Day +17 great day Amy new cells now grafted neutrophil is .63 I was told anything above 500 means you are grafting ... however it does take about 50 days for your body to starting make it's own new baby cells . we are Thankful.
She got MAG 4 GRAMS and platelets .. early day at the Day Hospital!!! she is feel very tired from all the neprogen shots and every bone in her body aches . still eating and drinking .
Sue and Amy

[amyangel]

Hi everyone ,
Amy's day + 18 ,19 are all great so far
Amy is still eating and drink fabulous and the Doctors and nurses are all still amazed how well she has been doing .

We will be forever grateful to our donor !!
I guess I might know now how a donor might feel after getting neprogen shots
Amy received 5 shots and her body is so achy and I know to this will pass .

God blessed me with Amy and I and thankful ... but the beauty in all of this is that Amy doesn't understand everything that is going on which has made it easier for her . She is 27 ,but cognitive like a 5 yr old . Which I feel has been he biggest blessing to help her get through this BMT .

Thank the Lord the nurse staff is the same all the time .this also makes things easier for her .

Amy has charmed everyone's heart !!

White cells are GROWING !! 1.1 YESTERDAY
Neutrophil is GROWING .87 YESTERDAY

THANKFUL!!

[Cheryl C]

Fantastic news! May it continue.

[amyangel]

Hi everyone ,
Days + 20 , 21, 22, 23, 24, 25, 26,
Were days that Amy either needed Mag or Platelets . Much shorter days at the Day hospital . still eating good , but her body is tired .

Day +24 which was Oct. 31 was Amy's last day at the Day Hospital she was released . However they have kept her going there until her BMT doc gets back from Vacation . And then she would be seen in the clinic .

Day +26 was Amy's first day off !!

Day + 27 Nov. 3 2014 Amy needed 4 grams of Mag

WBC and neutrophil goes up and comes back down , but I was told it was pretty normal , But I do have to say it does scare me a little .
WBC = 1.9
ANC= 2.15
hemo = 9.1
platelets = 24

She is still eating and drinking great ... But it seems like her body has slowed down a little not so much a energizer rabbit anymore.

Prayers that God continues to answer our prayers and we thank him
everyday!!

Maybe God Bless all of you and Prayers to all of you .

Day + 28 is a day off !!

[bailie]

It is easy (and normal) for "her body has slowed down a little". I was still sluggish at Day 26 even though my counts were good. It is a difficult journey. It was about that time when I started eating well again, so Amy is way ahead of most people in the eating and drinking.

[amyangel]

Thank you bailie ,
How are you feeling now ?
It has been a road trip for sure and very interesting to say the least .
Day + 27, 28 , 29 , they were all still very good days minus the sluggish body which I think comes from MAG and Benadryl IV I'm putting my foot down no more iv Benadryl ... not good for Amy's wobbly body .
Day + 29
Mag 4 grams= 4 HOURS
IVIG= 3 HOURS
pro graft IV= 2 HOURS

Day + 30 WE STARTED A NEW MED to help with not getting any lung infection called atovaquone I was told everyone starts it one day +30
Amy needed
Mag 3 grams = THREE HOURS
1 unit of blood = TWO HOURS
and pro graft IV =TWO HOURS
which makes for a long day
Amy is still eating and drinking
stools are great ! no rash
counts are going up slow
still has hair on her head.
Day + 31 we have a DAY OFF !!!!!!!!!!

THANK YOU LORD JESUS !! AMEN

[bailie]

I have learned that patience is so important and at times very difficult. The mag is tough for many. I am still getting mag at home five days a week and one day at the infusion center. I amazed that Amy is eating and drinking well. That was one of the most difficult things for me through about Day +35.

I am feeling fine (Day +80) and almost as well as before MDS. Naturally, I am always aware that that can change at any time. I have had skin GVHD in different places (arms and legs) for about three weeks. It is barely noticeable and almost entirely gone now. It didn't itch, so I am glad about that. I take a fast one mile walk every day and seem to tolerate it well.

[amyangel]

bailie
Wow that's wonderful about the walking and the little GVHD about when did you get it gvhd ? what day + do you remember ?

[bailie]

I noticed the skin GVHD at about Day +65. It was nothing more than a few red spots on my arm. I don't think a person would notice if they weren't looking for it. The arms cleared up and then it went to hips and legs. Again barely noticeable. My doctor explained (as much of the literature indicates) that a little GVHD is positive. I will be waiting to see what comes next, hopefully nothing. My weight has remained constant for the last two months and temperature averages at 97.5.

[amyangel]

Hi all,
. After seeing Doc today I am now scared .
He told me he doesn't think the transplant is working due to Amy's enlarged spleen.
Usually by day +30 they see mostly donor in ANC and they still see 90% Amy . They are giving her 3 more weeks, sometimes it can take a little longer . between 30 and 42 days after transplant they start to see a change for the better in her ANC .. Amy is still only at 1.13 .

I asked what next ? He Said, he would like to try the transplant over but this time she will get radiation of the spleen ... he thinks the spleen is still eating her ANC cells up .

we would go home for about 6 weeks and then come back here to do it all over again .

She is still eating and drinking and Happy !!

Amy spent two night in the hospital due to some junk in lungs Day + , 32,33 ,34 and released on Day + 34 after getting all kinds of antibiotics.

We demanded a phenobarbital seizure med level check and she was toxic which now I know why she was so sluggish 75 which it should be in the 30's .

Please keep her lifted up in prayers this is going to be a long road .

[amyangel]

Day + 35 - 48 They all seem to be the same.... The thing she has needed most is Magnesium ... and I was told this she will need for a long time possibly even until the next 2nd BMT .

She has only hand a few handful of days off from the Day hospital most people by now have to only go once a week to the Doc office ... LOL not beautiful Amy.

This week she is having Three days off pretty exciting, but still makes long day because we are not at our own house.

Getting things ready at the apartment for moving back to Home sweet Home!!

It's so weird not to be looking at a lab paper today . I'm sure you all know the feeling and the wanting to hold those results in your hands .

I am looking forward to Fridays Labs sounds strange right ... Amy number have been slow but on the up . Hemo was only 8.7 and I'm sure she is need of Mag . Friday WILL BE INTERESTING FOR SURE ! Thanking my heavenly Father everyday .

Tomorrow is Thanksgiving eve Amy and I will be making our famous Pumpkin pie her favorite!! Cutting carrots and celery chopping onions and making a few deviled eggs yummy.

Thanksgiving = I am thankful for so many things this year . First I am thankful for my Father in heaven who has put is loving hands all around us with grace and love . I think him for teaching and giving me patiences.

This fall I am thankful for all new friends I have met in the wonderful support group Thank you Neil Cuadra for starting it !!! May God bless you and your family everyday .

As funny as it sounds I am thankful for learning how to cook for 2 .

We are Thankful for our team of Doctors that don't give up !

I am Thankful for my family and friends back home lifting us up in prayer !!

We love you all and prayers and blessing to all of you !
Sue and Amy

[bailie]

You are a terrific person Mom.

I am getting mag every other day at the apartment and now at home. It is so much better at home. I will probably go another couple of months.

[amyangel]

Hi everyone we had Days + 49 ,50 , 51 off

Today is Day + 52 and Amy LABS for sure today reflex that her BMT was not a success . My heart is sad and feeling yet loved by my heavenly father !

Amy was in need of Blood 1 unit today , mag, 4 grams and she got IVIG
Amy's appetite is still very good which I am very thankful for .
Prayers for all of you that you have a full body healing !!
Love and many blessings

Sue and Amy

May God bless you and keep you. May He make His face shine upon you and be gracious to you. May He look upon you with favor and give you peace. In response may we live lives of thankfulness and gratitude in this season and each day. Amen.

[Whizbang]

Amen!!!

[DanL]

I see that a few of you are on magnesium. I started taking magnesium citrate pills OTC and found that with my metabolism I was able to get off of the IV magnesium pretty quickly and maintain better levels with less magnesium. I started by taking 500mg and worked up to 1g, because magnesium can be rough on the digestive tract, but within about 3 weeks i was able to drop down from 4g per day IV to 1g oral.

Just a question to run by the docs next time you see them to see if this might be an option.

[bailie]

That is interesting Dan. I take 1200 mg magnesium oxide three times a day in pill form and 4 grams magnesium sulfate in IV every other day. I will continue this until I taper off the Tacrolimus (Prograf). I have read in several places that magnesium in pill form is only 10-15 percent effective. I am looking forward to the day of no magnesium.

[amyangel]

Hi all,
Today we are Day + 55 ...

Days + 53, and 54, nothing great same old same old ...lol
Mon. labs are still showing the same ..not good , day 54 Amy had a day off and it was great !

Today Amy has a different change in her labs results which sent a RED flag to her Doc. to do a BMB on next Tue.
I love this Doc. Hari is his name and very well know all over the world , but some days you which he was a little most sensitive to the ear .

LOL one of the nurse shared maybe it's his culture lol
I think he has been wonderful don't get me wrong and he is still thankful for where Amy is at ... Today he said , well we didn't kill her and that was his biggest fear . He,said , we have a 2nd chance to try it again and we know now her immune system is stronger than we thought going into it the first time !! To God give the glory for that one !!

Amy's DNA does not follow the pattern of most people so we have given him a great challenge... "and so has God " That I would call our Father God in Heaven he was her creator !!

We have had to learn to Trust , Listen , Wait , and you are not kidding TAKE ONE DAY A time .

I have learned that its ok to Yell and be mad , to be afraid but know that God is by our side . and CRY because God hears all our tears fall .

Today Amys labs are
wbc 1.4 Mon. they were 1.9 ANC 1.04 Mon. 1.57 hemo . 7.7 Mon. 8.1 she is getting 2 Units of blood today . Mag. was 1.3 Mon. 1.4 she is getting Mag today ... As Far as the Mag Amy is taking oral oxide the other mag can not be crushed because it is a slow released kind of med. Amy is already down to only 4 ml of Prograft and her mag stills drops .

We crush all meds for Amy .

Amys platelets have dropped today which again was another red flag.. 96 it had been going up pretty much this whole time ... This will also tell us if she will need any kind of Chemo while we wait until next transplant .

we will continue to keep all of you in our prayers ! Give all the Glory to God!!

Sue and Amy