Vanity - Update on Bone Marrow Transplant

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:

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!

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.

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