Day of Donation, Day -1

Alice's donor donated his marrow today.  I found myself thinking of this person often today...and praying for this person.  Tyler and I felt continued gratitude throughout the day.  Again we look forward to the day when we can make contact and personally thank him.

Alice spent the day with Aunt Amberly.   They had a wonderful time. 

Alice is getting more tired, still playful, just slowing down.  Her appetite is decreasing.  No complaints of mouth pain or skin rashes yet.

Today was a busy day for Tyler and I.  We had the day together and had much to accomplish.  We met with Natalie's teacher and principal to discuss her educational needs.

We were able to get enough done for one day, and the rest will have to wait.

Tomorrow is the big day---Alice is very excited for her bone marrow transplant. 

I will post pictures and provide more details tomorrow.

Lisy

An Early Morning

Our day started very early this morning as I was required to wake Natalie up at 4am in preparation for her EEG. Waking her up was to ensure that by 8am she would be able to more easily fall back to sleep for her test. For me, waking up wasn't so bad as it was getting the rest of the kids ready for the day before we left. So much to get done with a family before you get out the door. On the way up to the hospital I had one hand on the wheel and the other on Natalie to wake her up as she would innocently dose off every five minutes. When we arrived at the hospital we went up to Alice's room so Lisy and could switch places.
I spent the day with Alice as Thiotepa and Melphalan made its way though her tubes and into her chest for the last time. The chemo is really aggressive and requires us to bath Alice three times a day. The baths are necessary as the Thiotepa secretes out of her skin and can leave burns. We are also required to change her bedding the same amount of times. It really is a pain, we can only hope to stay ahead of it so that she doesn't get the rashes and burns. So far from what I can tell the only signs of the Thiotepa treatments I can see are her rosy red cheeks. We played games and solved puzzles today until she felt too sick to do so. I found it interesting that although she felt sick a couple times today it only lasted for a little while until she felt better again and we were having a foot race from one end of the room to the other. She loves to run, when she can. Tomorrow will be a rest day for Alice and I'm really happy for her.

Natalie going down for an EEG nap

Alice starting to feel the effects of her chemo

Thiotepa, Day -4

Thiotepa began today along with the last dose of Fludarabine.  Alice did very well considering it was her fifth day of Fludarabine as well as adding Thiotepa.  She has been on Zofran around the clock which has kept the nausea away.  She has a great appetite still, in which I'm happy about.

Today's main events were bathing with her new rubber ducky and two Halloween mice-three times.  The rubber ducky was a prize for changing her dressing...a freshly placed dressing...ouch!  The dressing was actually removed and not replaced.  Her line will remain undressed for three days while the Thiotepa is in her system, there can be no restrictions to her skin...also she is required to bathe at least three times a day for the next three days--a very thorough bath.  It's tricky business keeping her dressing dry, protected from tension and germs too.

Thiotepa is yucky and excretes through the skin, causing burning and itching.  She will have a rash, but if we keep on top of it, maybe it won't be too unbearable.  Already she complains that her skin is tender...this is normal.

We change her linens, clothes, etc. three times a day.  Luckily she is only receiving two doses of Thiotepa (1 day).  I must have been exposed to some because my finger is raw and itchy...poor thing--That is Alice, not my finger!

I would imagine that we are seeing the beginning of the yucky days.  I wish to just fast forward the clock past these days until she starts to feel better again, but we will work hard to make it as comfortable for Alice as possible.  We have had another fun day filled with giggles.

Tomorrow, bright and Early I will meet Natalie in EEG...I can't wait to see her.

Lisy

Can you find the bear?

There he is!
Every morning Alice runs to the window and looks for the bear, he is in a new place each day.

Laughs All Day, Day -5

Nothing but playing and laughs all day for Alice.  We have had the best day ever!  She kept everyone very entertained around here.

Her counts are still stable.  She had a dressing change today and it conveniently occurred when Aunt Amberly stopped by, so she requested that Amber hold her hand during the dressing change.  Thank you Amber!  Amberly came with a new Minnie Mouse Halloween night dress....so cute!





She was pretending to drive a wild car really fast...this was all her idea.  In the first video she crashed but continued to drive that wild car.  After a while the nurses from other rooms were stopping by to see what was so funny.  I think Alice was the loudest patient of the day (opps)....thankfully a happy loud.

 

Alice and I Skyped (facetime) home and spent at least an hour on Skype.  Natalie carried the iPad with her the whole time.  She has been homesick for her Mom.  Monday Natalie has a scheduled EEG here at the hospital, so I will get to see her Monday. :)

Mom loves you Natalie, Matthew, Blair and Evie.  I miss you!!!

Lisy

...And Tyler had an awesome day because both BYU and University of Utah won!  I even watched the BYU game on TV so I could talk football with Tyler.  I could see the fans in the U stadium from the window.  That was exciting. --The things we find exciting around here.

Day -6

I came to be with Alice today...I was so excited to be with her.  I was missing her even ten minutes after they left for the hospital on Wednesday.

Alice and I have been having a great time.  Tyler went home to spend the rest of the fall break with the kids.  When I called home they were watching Harry Potter...and nobody seemed to be complaining.

So far Alice is doing awesome.  She has so much energy.  Her counts are still stable.  On Wednesday she did receive an infusion of IVIG...it was due anyway.  This will help in our efforts of keeping her healthy.  So far, no nausea, however, she is beginning to have diarrhea.

Natalie came with me and visited with Alice, then went home with Tyler.  Soon children will not be able to visit...I was glad Natalie got to come.  Alice was very happy to see her.

Today is day -6...which means that we are counting down to transplant day (day 0).  Then we count up to 100 and so on and so on.  All this is too familiar, but we got it down...and we are going to do our very best.

Lisy

Natalie didn't want to leave Alice's room.  She has been hooked at my hip lately.

A favorite trick.

She loves the spooky halloween mice I brought her.

We had a grande tea party.

Lots of learning with Leap Frog....love it.

To the D Pod

This morning as I drove Alice to the hospital, I didn't mind the rush hour traffic. I purposely allowed my mind to toil in the short term. I found myself looking for slower traffic and merging into it, foolishly thinking that I was defying the inevitable. I would glance in the mirror to watch Alice in her car seat hum a song or ask me a question. The ride was no different than the rides before except that I wondered if it might be the last one.  Upon arriving she requested to ride in the stroller up to the fourth floor. I obliged and off we went through the north entrance and up the elevator painted with rabbits. On the 4th floor Alice then requested to get out of the stroller and do her traditional entrance to ICS by hitting the door entrance button and walk through the corridor she is so familiar with. Except this time she did not walk...she hopped, and it was cute. Cute enough to get the attention the nurses to welcome her back with happy greetings and concerned faces. Down the "D" pod and into a room we have made residence in several times before. Straight to the window she went to spy the new addition of the hospital being built. But it wasn't the building she was interested in, but the stuffed "safety bear" conspicuously placed in the third row of windows second from the left.

As I smiled and acknowledged her excitement the nurses and techs prepped for her vitals and chemo. Today will be 30 minutes of Fludarabine designed for cancer patients to destroy cancer cells. In Alice's case this chemo will destroy all of her cells within her immune system. Much like Roundup weed killer will affect any growth it touches, the Fludarabine will do the same. It will again, leave her body without the protection I have learned not to take for granted.  Her side effects will be nausea, vomiting, diarrhea and my least favorite the mouth sores. It will also drop her blood counts in a couple weeks too. She will receive one dose each day for four days. I am nervous, more so than the last go around. Nevertheless we have punched in, and we are not punching out until this is over.

Tyler

Past Week

I haven't felt like posting recently...for two reasons, I'd rather be doing something else and I haven't had the words to express myself.

I feel like I can't get enough time with Alice before she goes back to the hospital for more treatments and transplant.  She is so happy, fun and energetic right now....I know it's just a matter of days before all that will change and I don't want to miss a moment of her in the meantime.  The image of her being so sickly on her bed comes too easily to my mind.  The worries of something going wrong and changing our entire world keep me awake at night when I should be sleeping.  I can't help the thoughts and feelings that creep into my mind and heart of her leaving us.  The possibility is there, as it always has been, but this time we understand that the possibility is greater.  With all this said, I wish not to convey a sadly tone, but yet desire that our hopes are bright and that Alice manages well as she obtains good health.

I told Tyler yesterday that I wish I could stop the clock and live life as it is now...forever.  I used to wish that all the time in college, because I wanted more time to catch up on all my homework and projects, to feel ahead and on top of things; now my desire for time to halt is surely more sincere.  

On Wednesday Oct. 2^nd, Alice had a clinic visit with BMT.  Her counts were still okay.  Everything was quite good; her platelets were 38, not low enough to infuse, Hemoglobin was 10.3.  We decided to wait until her admission to ICS on Wed. Oct. 9^th to check them again…she seems to be doing well.

On Thursday Oct. 3^rd, Natalie had a full day.  She had a hearing test, labs and a visit with ENT.  Her hearing test worsened since the tubes were placed, as expected.  We will re-check in 6 months.  Her tubes look great.  She did well with the labs; Matthew came to provide extra support.  The lab technician even provided him with a prize.

Before the appointments we managed to leave home early enough for a tour of the Beehive house.  Natalie wanted Matthew to experience it just as Blair had several weeks ago when he came along to support Natalie.  I think the added activity eases the dreaded feeling that Natalie associates with doctor’s visits.

Lisy

The Beehive House

The kids were memorized by the toys they had back in those days...no plastic toys. 

The Dinning Hall

Lion House Pantry for lunch

Natalie loves the food.

To the hospital we go for labs.

Hearing Test 

Around The House

Blair looks 40 years older...

Natalie held a somersault contest.  

The final score board.

Grandpa and the little girls.

Evie had frozen blueberries, and the kids thought she lost a tooth...it was funny.

I love when they have fun together...not always is there such harmony.

Evie, Bonnie, Paige and Alice...cousins.

Coming Home

SUNDAY

Yipee....We are coming home!  Alice is happy to go home, she misses her family; however, she is glad that she gets to return to the hospital in 9 days.  I'm sure after this next hospital stay she may change her mind about how much she loves to be at the hospital...she will be quite ill--but who knows, she may still find ways to like it.  The ICS staff have played a HUGE role in her loving the hospital.  Many thanks to them!


She wanted to dance for Evie.




Singing her favorite song.




We will come back to clinic on Wednesday and check her platelets as they have been dropping sooner than we expected.  With the infusion of platelets yesterday they bumped up into the 70's.  Hopefully this will hold her over until we come to clinic on Wednesday.

Alice's nurse Shannon took this picture of her...Alice later took 12 pictures of Shannon.

getting ready to go home.

Evie at last!
These girls got dressed with t-shirts, swimming suits and tutus.

Lisy

Last Day of Campath

Alice did awesome today...I was so worried that the bigger dose of Campath would be too hard for her and cause a terrible rash.  She was happy and well the whole time.  The infusion lasted 10 hours.  If she does well tonight we might be able to go home late tomorrow night or Monday morning.  We had a couple vistiors today, and that was nice, Amber came and then Michal and Roslyn stopped by. 

We Skyped home...it was great. 

Alice did receive platelets today.  This was a bit surprising to us as we didn't expect her platelets to drop so quickly.

Her recent counts are as follows:
9/25--Platelets 124, ANC 400
9/26--Platelets 92, ANC 1000
9/27--Platelets 26, ANC 800
9/28--Platelets 12, ANC 800 (platelet infusion required)

Michael, Alice and Roslyn
 

Lisy

Evie The Nurse/Campath Rash

I took the videos a week ago of Evie giving the girls their medicine.  They are such great sports to let Evie do this...honestly Evie is crazy about it.  She can be very insistent...and so we all give in to Evie and cooperate with her demands of being Nurse.




Today Alice did alright with her third infusion of Campath.  Each dose gets bigger and infused over a longer duration of time.  Today she developed more rash on her body.  It was worse than yesterday, but thankfully the rash responded well enough to the hydrocortizone and Vistaril.  I really hope tomorrow's dose won't be too much for her.  It will be the highest and last dose.  Of course the real trouble from this drug will present itself in a week or two.

The schedule of Campath is as follows.
9/25--3mg infused over 2.3 hours
9/26--10mg infused over 9 hours
9/27-- 15 mg infused over 8.5 hours
9/28-- 20mg infused over 10+ hours

Tyler and I switched places today.  We were happy to see each other.  He was ready to go home, but didn't want to leave.  He kept saying...I don't want to stay, and I don't want to leave.  He wanted to be home but didn't want to leave Alice and I.

Alice is still on target to go home Monday morning if all goes well.  The nine day break will be good for us as we prepre for the long stay.

More news tomorrow.

Lisy