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Vanity - Update on Bone Marrow Transplant
self ^ | 7/29/2003 | muffaletaman

Posted on 07/29/2003 12:26:47 PM PDT by muffaletaman

PREVIOUS POST - http://www.freerepublic.com/focus/f-chat/940572/posts

Well, we may finally have a hint that we are turning the corner!

Lani Marie's White Blood Cell count has been something like 0.02 to 0.05 since her chemo and radiation ended on 7/10/2003 (normal range is 4.5 to 13.5). This was a good thing because this is evidence that the old bone marrow has been all killed off. BUT eventually, the new bone marrow is supposed to kick in and begin making new cells.

The doctors haven't been worried, as different people have their counts begin to come back at different times, but on the other hand the other girl - 17 yr old - who had her chemo, radiation and BMT at the same time as Lani Marie, had her cell counts come up starting the end of last week, and will be discharged in a day or so. And the lead doctor did say Monday to Lani Marie that it was time for her blood to “wake up” - chiding her gently and in a humorous way, which she took well.

Maybe it worked... because yesterday Lani Marie's WBC count increased to 0.09. This morning it is 0.12.

Such a small thing, but I was grinning like a cheshire cat when I called my wife this AM and she told me!

The key overall number is something called ANC - absolute neutrophil count. Neutrophils are the key blood element resisting bacterial infection, and the ANC has to be above 500 for three days in a row before she can leave the hospital and go to 3X a week outpatient monitoring from home. (The other girl’s ANC was 750 on Sunday and 1000 on Monday).

Lani Marie’s ANC has been 0 or 1 since the transplant. Yesterday it was 5, and this morning it was 10. That is ten times better - still needs to improve another 50X but it is finally increasing as well!

Here is URL to a place that discusses these counts, for any who want a more complete discussion:

http://www.bymyside.com/infection/understanding.jsp

She has had occasional nausea on a daily basis - 2 or 3 times during the day, plus once or twice at night, since about 2 days after the transplant infusion on the 11th. Not enjoyable, but generally it has not been too bad according to my wife. She also ended up developing mouth sores – a side-effect of the radiation - and had over a week when she could barely swallow or talk, and only swallow water melting from ice chips. This combination of nausea and her mouth hurting was the hardest time. They had her on a continuous morphine drip then, plus a button she could push when the pain was worse and get an extra automatic increase in the morphine. That lasted for about 8 or 9 days.

She had one day - Tuesday of last week I think it was - when she was feeling particularly poorly that was disheartening to her, and she had a very sad and emotional day that day, according to my wife.

And when I got back Saturday 7/26 after having been gone the last two weeks, she was also feeling bad that day. She didn't say a word to me the whole time I was there, as she was either sitting up in bed with a basin on her lap with nausea, or was lying back dozing.

But Sunday she was doing better, and I finally got to give her a hug and kiss, and I said a few things that made her smile, and she talked some when she was feeling good (still had a bout of nausea for about 45 minutes or so). Yesterday they switched to a different anti-nausea medication which is in pill form, and for whatever reason, she hasn't had nausea now since late yesterday afternoon.

Sunday night and last night were the first two nights she (and thus also my wife) slept the night through, from about 11PM until 6:30AM. Another small victory - or not so small for those who have been hospitalized and know what a relief it is to get a good nights rest when you haven't been able to.

My wife hasn’t left the hospital except the one day, overnight Friday evening 7/11 when Jennifer did the bone marrow donation. My wife took Jennifer home while I stayed with Lani Marie that night, as Jennifer really needed help that evening.

The donation procedure was very hard on Jennifer. She was in recovery for 5 hrs before she felt well enough to go home due to post-anesthesia nausea, and even then she still got sick driving home and that evening. Her pain from the procedure was much worse than anticipated. She was in real serious pain over the whole week-end. I had to leave Saturday, but in speaking to her on the phone Sunday and then Monday, I could tell on Monday that she was starting to sound more normal. Unfortunately on Tuesday, when she was beginning to feel a little better still, she decided to go visit a couple of friends which really overextended her, and she was in more pain on Wed-Thu. Even now, after 2-1/2 weeks, there is still a small amount of discomfort depending on how she moves. She has really given a gift of value beyond compare, and the personal price she has paid makes it even more praiseworthy.

Anyway, taking into account that one evening, Lani Marie has been in the hospital for 26 days, and my wife for 25 days, by her side the whole time. I was amazed at how well my wife is doing considering all that time in these circumstances. Her strength is remarkable, as she seems as right as rain and good as gold. She helps Lani Marie with going to the bathroom and her IV hoses; when she is sick, to rinse her mouth out and so forth; with her bath every other day or so; with getting the nurses to give Lani Marie extra nausea medication when she is going through a spell; keeping me informed of each days events when I call, and the blood count nuimbers; etc. She is really someone special – but I knew that the day I met her in the fall of ’79.

Also, Lani Marie’s brother Eric – 18, just graduated HS in May – and Allison – 16 and a Jr in HS this year – have spent the evenings with her and my wife almost every evening since Lani Marie went in. They run errands – help with getting the personal laundry done – bring in supplies from the grocery store for my wife to eat – etc. When Lani Marie is feeling good, they play Nintendo with her, or help with some of the craft things she has gotten (beads – paint books etc.). They have been a big help as well. For example, Eric stayed there from Saturday evening until last night. Last night Allison stayed, and may stay again this evening.

Lani Marie has received almost 100 cards from relatives, friends, and people who have heard about her through Freerepublic, church or others. Some cards have come from as far away as England and Canada!

Also, several folks have made folded paper cranes as gifts for her as a token of good luck. One group and another fellow have made many dozens of them. She has a total of almost 300 of these paper cranes.

These cards and cranes are taped on posted board and mounted on the walls or the doors to the closet in her hospital rooms. They almost cover her room. They have really cheered her up, and made her look forward to the mail delivery each day, when she has felt good enough to be opening letters.

THANKS to ALL of you who have taken the time to drop her, and/or my wife and daughter Jennifer, a line or note. This kindness on your part, and your thoughts and prayers, will never be forgotten by our family!


TOPICS: Chit/Chat; Daily Prayer; Health/Medicine; Miscellaneous; Religion
KEYWORDS: bone; cancer; leukemia; marrow; transplant
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It is still VERY early in the recovery process, and I know now from reading more about other peoples BMT experience and recovery that there are lots of hurdles that may have to be overcome. But SO FAR there has been no serious problems or complications.

As parents, we are concerned but also very hopeful. Each day that goes well – without any serious issues arising other than what is normal and expected - makes it a little less likely that something will occur in the future, I think / hope.

We will give another update as things progress, in a month or so at the very least.

1 posted on 07/29/2003 12:26:47 PM PDT by muffaletaman
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To: muffaletaman
UPDATE on BONE Marrow Transplant -- sheesh... spelling...

Link to previous post:

Vanity - Bone Marrow Transplant Recipient

Thanks again to everyone...

2 posted on 07/29/2003 12:32:37 PM PDT by muffaletaman
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To: muffaletaman
Thanks for the update and I'll continue to pray for your family.
3 posted on 07/29/2003 12:57:11 PM PDT by austingirl
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To: shattered; andysandmikesmom; trussell; MeeknMing; Salvation; dansangel; Alamo-Girl; onyx; ...
To all of you who responded to the earlier post... I know we have had the prayers and good wishes of so many of you... THANKS forever!
4 posted on 07/29/2003 1:10:32 PM PDT by muffaletaman
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To: muffaletaman; TxBec
Thanks for the update!
5 posted on 07/29/2003 1:17:42 PM PDT by Txslady
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To: muffaletaman
Praise the Lord for the progress. Thank you for the update and ping.
6 posted on 07/29/2003 1:19:10 PM PDT by djreece
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To: muffaletaman
God is awesome and so is the power of FReeper prayer.

Have had Lani Marie and all of you in my prayers since your original post. Will continue to offer up prayers for all of you and will target her counts to keep them on the rise.

God bless all of you - this has been a remarkable story and a *journey* for all of you. May God continue to bring you all strength. We thank You, our loving Father, for the favors that You grant. Please keep Lani Marie's counts rising to where they should be. We ask these favors in the name of the Father, the Son and the Holy Spirit, Amen.

Thank you for the update!
7 posted on 07/29/2003 1:20:02 PM PDT by dansangel (America - Love it, Support it or LEAVE it!)
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To: dansangel
We cannot predict what the next tomorrow will bring, but we know what some tomorrow will bring for each and every one of us someday. So we must remember to be grateful for each tomorrow that becomes a today, for the blessing that it is...

Thanks for your prayers...

8 posted on 07/29/2003 1:26:03 PM PDT by muffaletaman
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To: muffaletaman
Thanks for the update and for all the details about Lani Marie. She is in my prayers. I urge you to teach her to verbalize her faith in God to heal her. Help her to speak healing as though it has already occurred. (This does not deny her current condition, it just is calling for the healing that God is providing.) Have her repeat each day, "God is healing me. My white blood cell count is increasing. My immune system is getting stronger." The body responds to what the tongue confesses. God bless you and your wife. You have an amazing family. What a blessing that Jennifer could have such a vital role! May He strengthen her and help her to glow with the joy of giving.
9 posted on 07/29/2003 1:27:47 PM PDT by Faith
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To: muffaletaman
You still have mine. I'm sure you'll have good news in the next days.
10 posted on 07/29/2003 1:27:50 PM PDT by Howlin (Everybody wave to the Copy and Paster in Chief!)
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To: muffaletaman
BTTT!!!!!!
11 posted on 07/29/2003 1:28:03 PM PDT by E.G.C.
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To: muffaletaman
Encouraging news, thanks for the update.
12 posted on 07/29/2003 1:41:00 PM PDT by snippy_about_it (Pray for our Troops)
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To: muffaletaman
Thank you for taking the time to update/ping us.

more prayers & bttt
13 posted on 07/29/2003 1:52:48 PM PDT by firewalk
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To: muffaletaman
PTL!
14 posted on 07/29/2003 2:03:12 PM PDT by unspun ("Do everything in love." | No I don't look anything like her but I do like to hear "Unspun w/ AnnaZ")
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To: muffaletaman
This is wonderful news - more prayers on the way - thanks for the update!
15 posted on 07/29/2003 2:09:19 PM PDT by M. Peach (eschew obsfucation)
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To: muffaletaman
This does indeed sound like good news. I will continue to keep your family in my prayers. Good Luck and God Bless!
16 posted on 07/29/2003 2:23:00 PM PDT by volchef ((if all scum are democrats does it follow that all democrats are scum?))
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To: muffaletaman
But SO FAR there has been no serious problems or complications.

Praise the Lord!! This is such good news. May the Lord give you all the patience and renewed strength for the rest of the recovery process.

Nana

17 posted on 07/29/2003 2:36:09 PM PDT by nana4bush
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To: muffaletaman
Thank you for the update. May God continue to bless you and your wonderful family.
18 posted on 07/29/2003 2:39:11 PM PDT by Bigg Red
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To: muffaletaman
Delighted to hear that your daughter is beginning to improve after transplant. At her young age, and with quick donation from her sister, I would say that her chances of full recovery are excellent.

I know a woman, about 30 now, who had to work like crazy to find a marrow donor when she was in her teens, as her siblings were not a match. She and her mother campaigned for marrow donors all over Los Angeles,increasing bone marrow registry by thousands of people. Still, it took three years to find a donor for herself, and her hopes were slipping away. At last, she received matching marrow. She went through a rough recovery period for awhile. Within five years, she was declared free of any sign of leukemia. She finished school, is happily married, and now busily works fulltime for the Red Cross bone marrow donor program, flying all over the world bringing marrow to recipients. She just couldn't be a healthier person.

With the excellent care your girl is receiving, with amazing family support, and with prayers from so many people, I truly believe she will be strong and healthy very soon.

Blessings and prayers.



With
19 posted on 07/29/2003 2:55:51 PM PDT by PoisedWoman (Fed up with the CORRUPT liberal media)
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To: muffaletaman
I put both Lani Marie and Jennifer on our Parish Prayer Line this week, so now you have even MORE folks praying for them!
20 posted on 07/29/2003 3:06:25 PM PDT by SuziQ
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