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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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To: muffaletaman
thank you for the update. more prayers.
21 posted on 07/29/2003 3:54:47 PM PDT by Tribune7
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To: muffaletaman
Wonderful news! Thank you for the update. May God smile down upon all of you.
22 posted on 07/29/2003 4:20:18 PM PDT by Sunshine55 (Use your tax rebate to buy American!)
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To: muffaletaman
God bless you all, neighbor.
23 posted on 07/29/2003 4:25:36 PM PDT by backhoe (Just an old keyboard cowboy, ridin' the trackball into the sunset...)
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To: muffaletaman
Thanks for the update.
May her health continue to improve.
24 posted on 07/29/2003 5:24:50 PM PDT by sistergoldenhair (Don't be a sheep. People hate sheep. They eat sheep.)
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To: muffaletaman
God bless you and all your family. This has had to be so hard on all of you. Prayers for complete recovery also.
25 posted on 07/29/2003 5:39:14 PM PDT by tiki
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To: muffaletaman
Thank you for this update.
I hope and pray that everything works out just the way you want it to. God bless you and your family. You guys are super.
26 posted on 07/29/2003 6:08:13 PM PDT by Dubya (Jesus saith unto him, I am the way, the truth, and the life: no man cometh unto the Father,but by me)
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To: muffaletaman
Thank You , for the update.

I've been waiting anxiously for the good news.

Peace

27 posted on 07/29/2003 6:54:27 PM PDT by Eustace
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To: muffaletaman
Thank you for the update. You are an amazing, loving family. :) I was so touched to read what everyone is doing to help each other. God is so awesome! I thank Him that everyone is making steady progress. Prayers in the name of Jesus will continue for all of you! May He bring Divine Health and strength to all and I pray the days will pass quickly until you are all well and home again. :) God Bless all of you!!
28 posted on 07/29/2003 7:22:53 PM PDT by sugar_puddin (That*s my story and I*m stickin* to it.)
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To: muffaletaman
Thankyou for the update ping. Please know that my family will continue to pray for Lani and Jennifer. We also include the rest of your family as we know this can be a very trying time for all of you.

The unselfishness of your children speaks volumes for you and your wife. Lani is in good company and that will help her in her healing.

Blessings from the trussell family.
29 posted on 07/29/2003 8:37:59 PM PDT by trussell (Small things occupy small minds. No wonder dems can play with themselves for hours.)
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To: muffaletaman
Thanks for the update.
30 posted on 07/29/2003 9:07:40 PM PDT by editor-surveyor ( . Best policy RE: Environmentalists, - ZERO TOLERANCE !!)
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To: muffaletaman
Prayers continuing for Lani. What a wonderful family she has to love and support her.
31 posted on 07/29/2003 10:06:22 PM PDT by barker (Love my KC Royals)
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To: muffaletaman
Prayers continuing for Lani. What a wonderful family she has to love and support her.
32 posted on 07/29/2003 10:07:06 PM PDT by barker (Love my KC Royals)
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To: muffaletaman
:-D

Praise God from whom all blessings flow!!

33 posted on 07/29/2003 10:25:01 PM PDT by patriciaruth
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To: muffaletaman
Thank you so much for sharing all of this with us! I continue to pray for her healing and for blessings for the whole family!
34 posted on 07/29/2003 10:37:30 PM PDT by Alamo-Girl
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To: muffaletaman; All
Shalom And Blessings!

Your up-date on Lani Marie is wonderful news!

Please give Her a Big Hug for us.

Continued Prayers for Your Precious Daughter and Family.

The Victory belongs to Yeshua/Jesus The Messiah.

We Love, Trust and Serve an Awesome GOD - Who knows our every need and hears every wispered Prayer from your Heart to His!

Baruch HaShem/Bless The Name [of The LORD]!

Amen ~ and ~ Amen.

35 posted on 07/29/2003 11:01:26 PM PDT by Simcha7 (The Plumb - Line has been Drawn, T'shuvah/Return for The Kingdom of HaShem is at hand!)
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To: muffaletaman
Thanks for the update!
36 posted on 07/30/2003 7:37:20 AM PDT by manna
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To: muffaletaman
Thanks for taking the time to post the lengthy update. Praise God from whom all blessings flow! Prayers God's healing mercies for all concerned continue.
37 posted on 07/30/2003 11:37:12 AM PDT by Freedom'sWorthIt
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To: muffaletaman
Thank you for taking the time to inform us about both of your daughter's recovery. Your family will still be my prayers. It sounds as if you almost have it made. With our Lord's help I am sure it will be done. May God bless each of you.
38 posted on 07/30/2003 1:34:54 PM PDT by Bizzy Bugz
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To: muffaletaman
Remember what Elijah said: "Come over here, boys, and see what the Lord God Almighty can do!" FReegards
39 posted on 07/30/2003 10:13:32 PM PDT by 185JHP ( Penumbras. Emanations. Fatuities.)
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To: muffaletaman; shattered; andysandmikesmom; trussell; MeeknMing; Salvation; dansangel; Alamo-Girl; ..
To be removed from this "ping" list, please reply by freepmail (private reply) indicating "Please Remove" and you will be deleted from it immediately.

Any who may wish to be added to the ping list, reply by freepmail (private reply) indicating LMK-BMT-ADD.




Well, things are really starting to move.

Lani Marie's ANC count:

All for the last 2+ weeks
after the transplant but before
last Sunday 0 to 1
Sunday 5
Monday 10
Tuesday 80
Wednesday 100
Thursday 260
Friday 740
Saturday 2890 (today) - WOW!

Lani Marie has a viral infection in the intestine, but the doctors indicate that it is not something they are extra concerned about - just monitoring. They are doing another culture today to see if it is clearing up.

Lani Marie is still having a little nausea from time to time, but not actually getting sick. She is tired often, but in between is getting to be a little more perky, it seems to me. And she is still resting well through the nights. Not eating any food yet... she had half a popsicle yesterday and that was all she cared for.

They are going to do an "Engraftment" study Monday. This will tell them exactly what type of white blood cells are being made - are they from Lani Marie's NEW bone marrow from Jennifer, or from her OLD bone marrow.

The result -->Should<-- be that it is all the NEW type cells and zero of the old original cells.

If there are any of Lani Marie's old white blood cells, that means that some of the old defective bone marrow has probably survived the chemo and radiation.

If this is the result, it is not what we want.

They would treat that by giving her more of a specific type of white blood cells from Jennifer. As I understand it, these white cells will attack any remaining old bone marrow cells and try to eliminate them as foreign bodies.

We will let you know how the study results turn out.

But the activity burst in her ANC count is outstanding!
40 posted on 08/02/2003 11:23:30 AM PDT by muffaletaman
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