UP, UP, & UP!

Dani's blood counts were up to 490 this morning, and soon the mucositis will be but a memory!  In fact, I've been told by many, she won't even remember that much of it.  Great, huh!  She still can't swallow anything, but the doctors were saying that when she can begin to eat some, she can go back to being an out-patient and escape from the hospital!  Hooray! 

I keep talking about how beautiful it is here, and rubbing it in about how it's only in the 70's, so I will put my pictures where my mouth is and send along some pictures out of the hospital windows.

This one is actually from Dani's room.  It is lovely, but the blinds don't go up so I went down the hall to take the rest.  You can see all the things I took pictures of out of our window.



The thing with the towers is Montlake bridge, and it is a draw bridge.  Over the long weekend, it opened and closed many times to let boats go through from Union Bay onto Lake Washington.  The last picture is actually across the hall from Dani's room.  That is Lake Washington past the construction area by Husky Stadium.

We did the Fancy Nancy puzzle today, Must admit we got a bit of glitter on the floor.  The cleaning lady will wonder what we've been up to,hee, hee. Our patient is getting very IMPATIENT.  She thinks 3 weeks in a hospital is not her thing!  Progress is being made, she is getting ornery again.  Have a good evening all you wonderful people.  More later

Bye for now,

MOM

Progress - Some

Yesterday there were two pieces of news.  One; the rest of Dani's hair is beginning to fall out.  And two;... she has 10 neutrophils.  Those are whitle blood cells that fight off infection.  Thats a good thing.

Today, her blood count was up some more, we don't know how much.  Mucositis is still with us, but today she seemed more alert, less nauseus, and we even played a game of dominoes.  She won!! That and three walks was the total accomplishment of our day.

She asked me one favor just before I left today.  She said would I go and tell the nurse she wanted an extension for her bed.  I hate to make her talk too much, so I went and asked.  Sure enough, in about 5 minutes a man came from engineering and took off the footboard of her bed, added a metal extension, replaced the footboard, inserted a cushion, and voila!, her bed was a foot longer.  She isn't so tall, but she needs the head of the bed, nearly straight up so that she sits up since she can't breathe very well with the mucus in her nose and throat, so it puts her down further in the bed.  The extension allows her to stretch out completely.  She seemed to relax.  I hope so.  She is very tired, she hasn't really slept in several days.

More cards were in the mail tonight.  Thanks to all of you, they do brighten what has lately been a long day for Dani.  She talked more today, but then, who's surprised at that!  She can't be quiet for too long!   We do appreciate all your prayers and good wishes.

It's late so I will go, maybe more good news soon.

Bye for now

MOM

Same ol-same ol - Ditto - Repeat

Today was a duplicate of yesterday and the day before, but maybe a little worse.  We are at day 10 today and before too much longer we should start to see her new blood start to engraft and then the mucositis will leave.  The nausea is still with her, but at a low level.

According to the doctors, everything is going as it should.  No fever, all her vitals are just perfect.  She is just miserable.

I picked up three cards in the mail tonight and I will take them with me to the hospital tomorrow.  She will be very excited to see them.  Thanks much.  I'm sure that she will be on top of this in the next few days.  In the meantime we will keep on keeping on. We are grateful to be here where we are getting the best medical care so that in the near future Dani will have a future.'

We have a nice place for her to recover here at Pete Gross house.  Maybe I'll post some pictures of our apartment here when it is daylight.  No more real news, just day to day for now.

Bye for now

MOM

Happy Fourth of July!

Happy Independence Day!  It is beautiful here today mid 70's and sunny.  We can see Mt. Ranier out of the hospital window today!  The doctors suggested that Dani put her head on the other end of her bed tonight and watch the fireworks through her window.  We will see if she wants to watch anything at 10 pm tonight except her pillow.  The pain is some better today, they finally got the medicine dosage strong enough.  She is very sleepy though.  So she has spent a great deal of the day sleeping, but she says she snores and wakes herself up.  Funny, huh!

I met a woman today whose husband is 73 years old and just had a transplant!  He is the oldest person they have ever given one to here, but there is a new experimental procedure that they used.  He is at this point free of lukemia, but has an infection.  He was very healthy before the lukemia, he biked 15 miles a day and swam laps.  So they thought he would be healthy enough to have a transplant and so far, it seems he is doing well.

Hopefully just a few days from now, Dani will begin to engraft and start to feel better.  We are holding on, and looking forward to that.  She has one more does of methotrexate on Wednesday, that is a chemo, but it helps fight GVHD.  It may make her nauseus but they are getting a better handle on that too.  So maybe by the latter part of the week, she may feel a lot better.  She doesn't talk at all, she is using her sign language, which unfortunately, I don't understand.  I try hard to ask "yes or no" questions, so she can just nod or shake her head.  The nurses are great as are the doctors.  They are used to listening to people who can't talk because they have mucositis. 

Hope you all have a wonderful 4th of July and remember how blessed we are to live in this great country.  Thanks to each of you, more later.


Oh, I forgot, someone wanted the physical address again.  It is 525 Minor Ave N, Apt 601, Seattle, WA 98109
Bye for now

MOM

Sunday/funday - Or Punk Day

The doctors came in today and told Dani that this was the part of the hospital stay that they call "punky" when you really don't feel well at all for about a week.  Horray!  We're on day two of that!  She asked if she could dress like Punky Brewster, but they didn't encourage that, but we had discussed the colored stripes in her hair, that's pretty punky, right?  Her throat is really hurting, the morphine didn't seem to be doing too much, so they have changed her PCA to something called dilaudid.  It is supposed to be stronger than morphine.  It has made her sleepy, but we don't know yet how it affects the pain.  They have hooked up a suction wand for her.  It's kind of like what the dentist uses to suction your mouth while he is working on you, but she says it helps get rid of some of the mucus.

So, we are here enjoying the beautiful scene outside our window and suffering in silence.  Unfortunately, only Dani is suffering.  I feel just fine.  There is only so much to be done, and the nurses and doctors are doing it. 

I talked with a woman in the family room here at lunch time today.  I noticed they have a cot in the room and that someone is always with the patient.  I asked if they were staying at night, and she explained that she and her 19 year old son are here with the patient who is her 21 year old son.  He was diagnosed with a rare form of caner just before he turned 19, and has been under treatment for the last 18 months.  He will be having a "Tandem" transplant, his own cells will be harvested and given to him and then he will recover from that for a while and then he will have a transplant with his father as donor.  I guess we don't ever have to look far to find someone with more problems than we have.  We feel very positive that Dani will recover from this process and hopefully never have to go through anything like this again. 

The Elders quorum president and his wife came by again today and made sure we got the sacrament.  I asked that the bread be broken into "tiny" pieces, and she did swallow it and a bit of water.  That means a lot to us. So we will see how she feels later and maybe yet do a craft of take a walk, or if not, we will do both another day.  Thanks again for all your love and support.

Bye for now

MOM

Mucositis rampant!!

Today is Saturday and I didn't come to the hospital early today like I usually do.  I put in a little "retail therapy" first and it was great fun.  I found a few small craft kits that Dani can do here in the hospital and she seems interested, but she is pretty uncomfortable.  This stuff hurts!  She did get her PCA last night so she gets to push the button and get morphine.  It even makes a little electronic noise when she does.  Her tongue and mouth are covered with a white, milky colored coating that is apparently sores and she says her mouth feels swollen inside.  Ugh!  I asked if she wanted me to take a picture of her white tongue, but she declined. 

She doesn't have to swallow any more pills, they have put everything they can into IV form and liquids for the rest.  Still lots of medicine and more of the final chemo drug in four days, and then we will see how that goes.  Her blood counts are down and now we wait for them to start coming back up, but it will probably be another week before that happens.

Hope you enjoyed the pictures of the quilt, isn't it great!  We are both enjoying the cards.  Keep them coming.  I brought in a "smiley face" balloon today.  He has hair painted on the top of his head.  It is several different colors, lime green, blue, purple, pink, and gold in stripes one side to the other.  I did suggest that we could do that to Dani's hair and she seemed to like the idea.  More picture opportunities!  Dani had more platelets and red cells today.  They are taking good care of our girl.  This process is just taking a day at a time, no more news from UWMC.

Bye for now

MOM

Friday - Day 6

We are on day six since Dani's transplant, and guess what arrived today?  Yep, mucositis is here.  Her throat is sore and it hurts to swallow, I don't know just how badly, but she doen't want to take pills, and she says ice hurts too.  The doctors checked her throat and told her she will be getting what they call a PCA.  It's a button she can push for on-demand pain reliever.  She is looking forward to that.  Vic says it's a great invention.  Her just older sister says it makes you feel some better just to be able to push the button.  I hope so!


One really neat thing happened today.  The volunteers came in and brought quilts for the patients.  Dani chose one that is shades of greens and purples.  I am going to attach a picture of it today, now that I know how to do that. It was made by the Stone Soup Quilt ministries, a group of the Friends (Quakers) church.  It is lap quilt size and absolutely beautiful.  It's wonderful to know there are so many people out there who try to cheer others.

Speaking of that, more cards came today and I got one in the mail to take to her tomorrow.  Thanks so much for sending them.  They make her happy when she sees them on the wall at the foot of the bed.
We did puzzles from a book someone sent today, and she made an origami swan with the origami kit. She is very, very tired, but still doing her walks and her spirits are okay, but her body is pretty miserable.

I was able to donate blood today.  The Puget Sound Blood Bank was having a drive here at the hospital, and I went down and gave them a pint of my O Negative.  I figure if Dani is getting transfusions every day it's the least I can do. 

We are doing well here, beautiful weather, sunshine and mid 70's.  Are you all jealous?  Well, I'll go for now Bye for now

MOM