Vanity - Bone Marrow Transplant Recipient

self ^ | 7/4/2003 | muffaletaman

[muffaletaman]

Our daughter, Lani Marie (age 11, birthday 10/4/91), was admitted yesterday to Texas Children's Hospital for a Bone Marrow Transplant.

Last August she was diagnosed with CML Leukemia. This is very rare in children - less than 100 pediatric cases occur each year in the U.S.

While the new genetic drug Gleevec has controlled her CML Leukemia, it is not a cure. The only chance for a cure is the transplant. Her oldest sister Jennifer was a perfect 6/6 match as a donor, and we have hopes ->Of Course<- that the procedure will be successful.

She will be in the hospital for 5 weeks or so. More details below...

WHILE LANI MARIE IS IN THE HOSPITAL this coming month, her mother Lani O. Koskie, will be staying in the hospital with her full time, to take care of her.

If you wouldn't mind writing Lani Marie (and/or my wife) a little note or sending a card of support and comfort, I would be very appreciative!

NOTE - due to conditions of sterility required on the BMT Unit floor, no flowers, food gifts should be sent.

If you don't know my daughter or wife personally - as some of you receiving this do not - just mention that you are aware of them through FreeRepublic.

The Address at the Hospital is:

LANI MARIE KOSKIE (or Lani O. Koskie)

c/o BONE MARROW TRANSPLANT UNIT - ROOM 39

TEXAS CHILDREN'S HOSPITAL - 8WT

6621 FANNIN STREET

HOUSTON, TEXAS 77030 U.S.A.

=== More details for those who are interested ===

Lani Marie was admitted yesterday 7/3/2003. She will have 4 days of chemotherapy, followed by 4 days of Total Body Irradiation twice a day, to kill all her existing bone marrow.

On Friday 7/11 she will receive the BMT infusion, which Jennifer will donate that day in a surgical procedure. Jennifer may be sore a couple of days, but other than that there should be no side-effects for her.

The following week to ten days Lani Marie will most likely be in the greatest degree of discomfort from the chemo and radiation, then her recovery will begin.

When a certain measure of her blood antibodies reaches a count of 500, she will be able to be released from the hospital but will still have to visit three times a week for close monitoring for probably a couple of months.

If everything continues OK, those visits will be decreased over the course of the next year little by little to twice a month and eventually monthly and then 1/4ly.

She will be completely vulnerable to infection until her new blood starts to form and her antibodies come back in her new blood. As part of this process her current blood type will switch from O+ to B+, which is her sisters (and mothers) blood type.

Also, after one year, she will have to redo all her childhood immunizations.

She will not be able to go to school this fall (no crowds, or sick kids with runny noses, or strangers allowed till she is healthy), so we will homeschool at least the first semester, if not this entire year possibly.

This is an anxious time for us as parents of course, but every single person at TCH has been wonderful. The head of the BMT unit, while having to inform us of the possible complications, also says that given the overall situation, the profile of her case and prospects look good for a full recovery.

Please, if you don't want to send a card to her or my wife, don't feel obligated in any way. Many of her aunts, uncles and cousins will be sending cards. This was just something extra I wanted to do to give her stay an added boost of the positive - and a card in the hand (which will be mounted on the walls and windows of her room I am sure) is much better than an email on a screen.

THANKS for your time in reading this. If there is anyone you would like to forward this to, feel free to do so.

Sincerely,

Earl T. Koskie Jr.

[muffaletaman]

I hope this is appropriate... Happy Fourth of July to those of you who are out celebrating today!

[muffaletaman]

I have sent this to the "report abuse" moderator just to make sure it is OK... just wanted to let everyone know.

[shattered]

She will be in my prayers along with the rest of your family. God bless.

[andysandmikesmom]

I sent my very best wishes and prayers to you....I understand all too well, how difficult this is for all concerned...

I understand because our family went through the same thing in 1985...my fifteen year old son had been diagnosed with AML(specifically APL), in 1984....AML, in general and its subgroup APL is very, very rare...our son was intially treated at Madigan Army Medical Center, as we were in the military....but our oncologist was in constant contact, with Childrens Hospital up in Seattle...the docs in Seattle asked us, when our son was able, to be able to see our son, ,as they were so interested in his particular leukemia, and had not actually seen a case of APL in eight years....

After my son was initially treated and obtained a first remission, myself, my husband and our other son were tested to see if we were a match for a BMT...none of us were....it was devastating...

A year after obtaining a first remission, our son relapsed...it was then proposed that he get an autologous bone marrow transplant, which is where they take the patients own marrow out, just like they do with donors, that marrow treated and then returned to the patient...unfotunatley, ,when they took his marrow he had had a second relapse...

So they then proposed doing the allogeneic BMT, using me as a donor, even tho I was only a 4/6 match...both my husband and other son were only 3/6 matches...it was a dangerous and probably useless challenge to take on, but it was our only hope...

Unfortunately, before the procedure was begun, our son had a fatal cerebral hemorrhage, and died...

I tell you this, not to frighten you, as I am sure you are aware of all the risks of a BMT, but are are also fully aware of the great potential of this BMT to save your childs life...I tell you this, to let you know, that I am one parent, who understands all too well, the stress, ,and strain, and heartache, and shed tears that have become part of your family life...

While we were at Fred Hutchinson, we were treated so well, with nothing being spared to care for our child and for our family...we were there just a short time, so hopeful that a successful BMT could be done for our son...in our case it was just not to be...

But I surely will pray for you and your child and your whole family...

God bless you, and please keep us up to date with how things are going...

[trussell]

Request for letters and cards PING.

Please post your reply to muffaletaman.

muffaletaman, you and your family have my prayers. Keep us informed please.

[trussell]

Request for letters and cards PING.

Please post your reply to muffaletaman.

muffaletaman, you and your family have my prayers. Keep us informed please.

[trussell]

Sorry for the double post. Slight hiccup.

[firewalk]

Bttt

thanks for the ping trussell

[dansangel]

You and your family are in my prayers. May God our Father watch over and guide the surgeon's hands. May he hold your daughter Lani and all of her family in his loving arms throughout the recovery process. May God bless Jennifer abundantly for her selfless contribution to her sister's life. May you all find the strength as a family to comfort and support one another throughout this lengthy but necessary process.

We ask this in the name of the Father, the Son and the Holy Spirit, Amen.

Earl, please keep us updated when/if possible.

Meekie and Salvation - please ping your prayer lists - thanks.

[MeekOneGOP]

Prayers for your daughter, Muffaletaman.

[Tolerance Sucks Rocks]

I have sent this to the "report abuse" moderator just to make sure it is OK... just wanted to let everyone know.

Dude, if the admin moderator erases this thread, I'll be attending the first snowball fight in Hell!

[martin_fierro]

"Abuse"? No way. A worthy request/post if ever I read one.

BUMP

[hoosiermama]

.

[onyx]

I offer you my prayers and best wishes for your daughter's full recovery.

[BlessedBeGod]

Bump!

[SAMWolf]

Prayers being offered.

[Flyer]

Prayer Ping!

Send this young lady a card or a teddy bear or something. (No flowers or food - see above)

As always, a FReep mail will get you on or off this Houston topics ping list.

---

[glock rocks]

I'm offering my prayers for Lani Marie.

[xJones]

Thanks for the ping, Meek, this thread nearly slipped through the 'net. Muffaletaman posted at 2:12 p.m. yesterday and didn't receive a reply until 10:18 p.m. Without your ping I know I wouldn't have seen it.

Muffaletaman, prayers and 3 cards have been sent from here. Trust God and try not to worry, little Lani Marie is in God's hands, the safest place to be.

[xJones]

Bill, would you please add Lani Marie Koskie to the daily prayer list, and also her sister Jennifer who will be donating bone marrow to her. And of course, prayers for the whole family during this difficult time. Thanks.