Vanity - Update on Bone Marrow Transplant

self ^ | 7/29/2003 | muffaletaman

[sistergoldenhair]

Toward continued improvement.

[KineticKitty]

Great update, I hope everything keeps looking up.

[Alamo-Girl]

Praise God!!! Thank you for the update! I continue to pray for her and all the family!

[Cindy]

It seems like progress is being made --- wonderful! Prayers ongoing. Thank you for sharing muffaletaman.

[Tribune7]

Prayer bump

[Mo1]

Saturday 2890 (today) - WOW!

Great news and I'll be sending more prayers

Thank you for the update

[Bigg Red]

Wonderful news! Our God is an awesome God!

[stainlessbanner]

Thanks for the update. Many prayers.

[Teacup]

Continued prayers on the way. Thanks for the update.

[Dec31,1999]

Thanks so much for the update. I hope all continues to go well. May God bless.

[The Westerner]

You haven't written during this critical time. I hope things are going ok? We're all pulling for your little (big) girl and the whole family, too.

[muffaletaman]

Things are going very well so far!

Last Wednesday, 5 weeks exactly after entering Texas Children's Hospital, Lani Marie was released to out-patient status. She and her Mom got to go home!

They had spent weekend and first part of the week switching her to oral forms of Cyclosporin (anti-rejection drug) and the anti-fungal and anti-nausea medicine. They made the arrangements with the home care company to come and show my wife and Allison, her sister, how to do the feedings via the IV central line at night.



Lani Marie actually had a bit of trouble beginning to even drink water again, after having her stomach and all virtually completely shut down and unused for over a month. But Mom helped her, they spread the pills out a little instead of all at once, and things have progressed to where it was going OK. The Drs said Lani Marie had to be able to drink at least two glasses of water a day and keep it down before going home - such a seemingly small thing, but it was a challenge after taking almost nothing by mouth for so long. Should make you appreciate being able to take a long cool drink of water...

So Wednesday, about 10AM, I got a call from my wife. She said "Lani Marie has something she wants to tell you."

"I'm going home," she said when her mom handed her the phone. I can't tell you how big the grin was on my face, but it was probably no bigger than the smile on Lani Marie's.

She had gotten to the point earlier this week where she WAS ready to go home. Most of the sick feelings were behind - only occasional - and she was ready to get out . A good sign, compared to the weeks when she was either sleeping from anti-nausea medication, or just sitting up in bed with a plastic basin on her lap, trying not to be sick.

She wanted to get home to see her kitty and sleep in her own bed, and the day had finally arrived.

They got home Wednesday evening late afternoon, and Lani Marie tried a small baked potato for dinner that evening. She kept it down OK - and again, something as simple as eating a baked potato is a milestone at this stage.

She had a follow-up office call on Thursday and Saturday mornings. All the counts are fine - some are not normal yet of course, but they are coming up or are staying in an acceptable range for this number of days after the BMT.

We received the results of the engraftment study Thursday. Lani Marie's white cells in the study were 100% her sister Jennifer's. There was zero sign of the CML leukemia cells - not one. Excellent News!

There is also a very common virus called CMV (cytomegalovirus), that is one of the viruses that cause colds. In transplant patients CMV can cause complications. 80% of people have CMV in their bodies, because it becomes dormant after you get a cold but still remains.

I had donated a unit of blood for Lani Marie for her first transfusion, but they couldn't use it for her because it tested positive for CMV, so she got a regular unit for her first transfusion. (Think about becoming a blood donor if your health allows it - even if only once a year...)

Anyway, they also tested for that, and confirmed that Lani Marie was still CMV-free. Jennifer was CMV negative when she was harvested, so we were luckier still that not only was Jennifer a match,but she was in the 20% of people that don't have CMV residual in their bodies.

Also, they are still giving Lani Marie mail that arrived after she was discharged from the BMT Unit at TCH. So anything that has been mailed to her in the hospital will still get to her when she goes for her check-ups.

Monday Lani Marie goes in for a bone marrow aspiration. The do this under general anesthesia, but it only takes about 5 minutes to actually do.

Using a small needle, they take a small bone marrow sample from Lani Marie, similar to with Jennifer. But it is only one sample, not many samples and withdrawals with big needles, as they did with Jennifer's Bone Marrow Harvesting. The sample is looked at to make sure by this alternate method that every thing looks OK.

Hopefully her recovery from the anesthesia will be OK and she won't have nearly as painful an experience as did Jennifer.

Lani Marie has special a face mask which she wears when she goes to the hospital (where there are lots of sick kids etc.) or if she is going to be in a crowd otherwise, which she isn't supposed to do for now. No movies no malls no school etc. This is to prevent her getting any airborne infection from someone's random sneeze, or just something blowing in the wind in a crowded area.

But for example, when she and her mom take a walk around the block, and in the house with the family, she doesn't have to wear the mask.

Her white cell count is up to 2800 ("2.8") and has stayed there. (I don't have the most recent number for the ANC count - but it is still holding in at a reasonable level.)

SO we are in the home recovery phase. Compared to many folks, things are going pretty well, and her prospects continue to look good - heck, they look excellent!

Thanks again to everyone for all your good wishes and prayers... our family is grateful for your support.

[Tijeras_Slim]

Thanks for the update.

[Victoria Delsoul]

Thanks so much for the update.

[snippy_about_it]

Thanks for the update, hope to hear continued good news.

[Dubya]

O man what great news. Thanks for the update.

[Mo1]

"I'm going home," she said when her mom handed her the phone. I can't tell you how big the grin was on my face, but it was probably no bigger than the smile on Lani Marie's.

That is Great News!!! {{HUGS}}

[Howlin]

We received the results of the engraftment study Thursday. Lani Marie's white cells in the study were 100% her sister Jennifer's. There was zero sign of the CML leukemia cells - not one. Excellent News!

This is wonderful news! I will keep you all in my thoughts and prayers.

[Brad’s Gramma]

WONDERFUL news! Thanks so much for the update.

Now go enjoy that wonderful family of yours!! :-)

[sistergoldenhair]

Excellent.