Week Overview--Alice's Biopsy Results

Monday Nov. 26th--Decorating Day.  

This was the day we set up the Heroes' Tree for the first time (at the South Town Expo Center--Festival of Trees)  It was a fun day, my parents helped as well as my sister-in-law Jessica.  We started at 10:30 a.m. and finished by 6:00 p.m.  It looked wonderful.

--Why such a project?  I mentioned a little about this project in an earlier post, now I wish to expound more.  In June I had this silly idea to decorate a Christmas tree using only medical supplies for Festival of Trees.  The idea derived from feeling as though this project could provide a small source of healing for Natalie and other children who feel such anxiety with particular medical supplies.  Many times I tried to forget about such an endeavor as I knew it would mean added work to our already busy schedule.  However, the thought continued to return to my mind and heart.  So, we jumped in with both feet.

Natalie made a statement to a friend of mine while we were standing at Festival admiring the tree.  She said, "This tree is made of all the stuff that I hate."  In the very same conversation, moments later she said, "This is my tree and I hope I get to keep it."  Natalie stood and admired the tree proudly...as I hope all the children will do when they pass it.  It was neat to see the motive of this tree come to fruition.

I got my wish...it was purchased and donated back to be displayed at the hospital.  Now the many children who should see it but are too sick to have been at Festival can now see the tree in the hospital lobby.  The tree lights cannot be on at the hospital for safety purposes, but I think it looks good anyway.

It was a fun project; over the past several months as we collected pieces the kids helped wash them in Clorox and sort them into colors and categories.  They had some fun with it.  And of course it wouldn't have happened without much help.  Thank you to those who helped me.

My camera battery was dead, thankfully Jessica had her camera and was able to get some pictures of the tree.  My parents have some good pictures that I need to get from them as well.

Tuesday Nov. 27th--Opening Night lighting of the trees 

What a fun night.  Natalie and Alice were invited to turn on the lights to all the trees on opening night of Festival.  Natalie even said a few words on stage.  She was so nervous, yet did fantastic!
This is what she shared, "I am happy to be here and light up the trees.  I am feeling better.  This past year was hard for me and my sister Alice.  Many people helped us.  Thank you for helping all the children at the hospital."

Alice didn't want to say anything in the microphone, instead she danced to the music.  It was darling.
 
Aunt Amberly found some beautiful dresses for Natalie and Alice to wear as they turned on all the Christmas lights.

Thursday Nov. 29th--Boot comes off for good

Alice's leg is great, healed nicely.  No more boot!  She still walks funny, but she will adjust to a normal walk again.  We are so happy she no longer needs the boot.  We were feeling so bad because she could take it off herself and honestly she had it off more than on over the past two weeks.  Now Tyler and I don't have to feel so guilty that she isn't wearing it.  Like many things as parents...we just do our best and hope and pray that it is enough. :)

Leaving the Orthopedic office...no more boot!

Natalie's creativity...she was so excited to show everyone the cool game she made--the marble maze.

The things you can do with a box...we get plenty of boxes from Homecare.

Saturday Dec. 1st--Fevers, Natalie and Blair; Alice has tummy trouble

It was great to put the stomach bug behind us last week, but now we are seeing another bug.  Blair came down with a high fever and a sore throat.  I examined him and sure enough it looked terrible.

Natalie has had random high fevers as well.  Her lungs sound clear, her throat looks good, her ears do not hurt.  We are a bit puzzled.  We worry with her neurological susceptibility during illness and fevers.  She seems to be aware of it as well, because I can tell when she begins to seem a little loopy she starts to count to 20 or engages her mind in a manner to keep it focused and steady.  This is a great thing she has discovered, it has helped her.  We are still learning much regarding this new territory we have ventured into with Natalie.  She has a neurology appointment coming up.

Over the past four weeks she had approx. 5-6 small seizure episodes.  Since being on Keppra they have become much less frequent.

Often when Natalie spikes a temperature she will also break out in the hives.  It's not fun at all, she becomes miserable.  Thank goodness for Benedryl.  We are beginning to think that she gets the hives because of anxiety of thinking she may have to go to the hospital.  The moment she feels sick she also panics that she will have to be admitted.  We started telling her that she will be just fine and not to worry...the hives have improved.

We have been consulting with the doctors regarding these fevers.  Because she no longer has a central line we are monitoring her at home.  It is better this way...of course if she worsens, story changes.

The truth is (most likely) Natalie and Alice will often become sick over the next few years as their new immune systems begin to build immunities.  It's like being a newborn all over again, yet this time they will be able to overcome and heal without incredible intervention.

As for Alice she still has random episodes of terrible nausea and diarrhea--no fevers.  Maybe it's a virus, maybe it's to do with her marrow, maybe her GI track it still healing...who knows.  She manages to still play and have fun all the while.



Monday Dec. 3rd--Clinic for Alice--Biopsy Results, Pediatrician for Blair and Natalie

Busy day.  Both Tyler and I went to clinic with Alice as we needed to discuss with the doctor the treatments Alice may still require.  It was a needed conversation.  We decided to wait another couple weeks before starting more chemo (Rituximab) treatments.  We also chose not to give her more Nulasta.  Her ANC today was 500.  She will need to be seen weekly again to ensure her safety.

I wish I could just zap all the information in my brain onto this post.  It's hard to explain all the material we discussed.  To sum it up...Alice's body might have more antibodies that need to die in order for her to benefit completely from the new marrow.  Her biopsy indicated that she has 90% cellular mass.  This is a good healthy percentage for her. The marrow looked healthy and great...as good as any.  The question is why are her white cells being destroyed and where are they being destroyed.

At this point we can only try some things and see how she responds.  Hopefully we don't have to dig too deep to find the cause.  The news does not come as a surprise as we have always felt like there are other steps that need to be taken in order to get her on the road to complete recovery.  We pray that it will be an efficient and productive process.

Here is a great and simple definition of Rituximab:

Rituximab (trade names Rituxan and MabThera) is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of B cells. Rituximab destroys B cells, and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukemias, transplant rejection, and some autoimmune disorders.

Rituximab is a man-made antibody that was developed using cloning and recombinant DNA technology from human and murine (mice or rat) genes. 

Both girls have already had two rounds of Rituximab.  We are familiar with this drug, still it isn't easy to jump into, however, we feel it may be necessary.

Okay, Grandpa took Blair to the pediatrician--Blair has strep.  He was given penicillin and should recover shortly.  When Tyler and I came home with Alice, I took Natalie to be checked for strep as well.  Nothing came of it.  Her fevers are still a mystery.  Again, a probable virus.  Good news, so far tonight Natalie has no fever, just an asthma flare, which can be contributed to the poor air quality as we were out and about today.

The Real Rapunzel

Look how fast her hair grew.  Everyone had to come peek in the room to see Rapunzel...she played the part so well.  She couldn't wait to wear her dress to the hospital.

Play time

Mr. Snowman at his new home...the hospital.

The tree.

That is a stethoscope on an IV pole

Hospital dolls

Feeling better for a moment.

More news to come...I will try to post more often.  

Lisy

The Festival of Trees--The Stomach Bug

This past week was a roller coaster.  Each one of us at some point had the stomach bug, which is in fact what Alice had when she spent the night in the hospital.  The good news is that everyone recovered.  Natalie had a hard time getting over it, but SHE DID!!  We are so pleased and happy that both Natalie and Alice have overcome yet another illness...a good sign that their new immune systems are managing.

We hope everyone had a wonderful Thanksgiving.  We had a great time being with family and it felt good to celebrate a holiday surrounded by awesome people and to be home. 

Several months ago I had an idea to decorate a Christmas tree with all Natalie and Alice's used medical supplies.  At first it seemed like a silly idea.  One that I only imagined.  The idea wouldn't and couldn't leave my mind so I decided to do it.  Not only did I decide to do it, but to donate it to the Festival of Trees.  The tree is finished and now in Festival.  Truly such a project could not have happened without the help of my sweet family.  I had a lot of help.

We started collecting supplies from Natalie and Alice then it evolved into rallying the nurses and even pharmacists into the project.  Soon I had piles of things to sterilize making them ready to turn into a Christmas treasure.

Several nights after Tyler and I would put the kids to bed; he and I would listen to politics or watch a movie as we assembled medical ornaments.

As time approached I knew I had to recruit more help.  My Mother and Father did A LOT as well as my sisters-in-law, Jessica and Amberly, and Amy and my cousin-in-law Kevin.  It wouldn't have happened without them.

I will post some pictures tomorrow.

I heard that KSL will be doing a story on the tree on Wednesday the 28th on talk radio between 1-3 "The Browser". 

I will post the results of the tree soon...if it sells and where it may go.

If you get a chance to make it to Festival of Trees be sure to visit The Heroes' Tree.  It starts tomorrow and goes through Saturday, 10 a.m. - 10 p.m.

Lisy

Alice Comes Home--Natalie Has Clinic

Yesterday Alice came home--our fastest hospital stay ever--one night.  She was given her medications by IV while whatever she was dealing with passed.  She must have had a stomach bug.  We are happy Alice wasn't having GVHD. When I came home from the hospital the Elementary School called me to inform me that Matthew wasn't feeling well and would like to come home.  He came straight in and went to bed with a pink bucket.  He spent the evening hovering over the bucket.  I haven't seen Matthew so wiped out in a long time.

They must have had the same thing.  By the next morning Matthew was back to smack and feeling good.  He wanted to get to school so he wouldn't miss his spelling test....I never felt that way about my spelling tests when I was in Elementary School.

While in the hospital Alice received IVIG.  This will help her remain strong.  At some point we hope Alice will be able to provide productive antibodies of her own.

Natalie had her best day in Clinic ever!  This is huge news.  Not only were her counts great but she beat me in seven out of eight UNO games.  I finally captured her celebrating one of her many wins.  I was very glad she had a good day...as she always gives us fits about going to clinic.  Thankfully her labs were accomplished by only a finger poke.  Next time (in Four weeks) she will require a needle stick.  We better gear up now.

Natalie no longer needs Spetra (an antibiotic).  Another med off the list.  Natalie has had a handful of more seizing episodes.  Her medication needs to be adjusted possibly.

Lisy

A new room and a new challenge, we had races getting the magnets to the top.

Collecting goodies for her new club with Matthew and Blair...Alice and Evie haven't really been invited to the club--they don't follow the rules.

Making a paper Turkey

Hard Morning for Alice--Spending a Night at PCMC

Last night before bed Alice said her tummy was hurting.  We brought her the pink bucket and out went dinner.  She was fine the rest of the night; however, this morning she vomited at least 8 times and couldn't keep any food in her tummy nor her medicine.  We informed the doctors and they felt it would be wise to watch her over night.

She has been nauseous intermittently for the fast few weeks.  We wonder if she may be experiencing borderline symptoms of rejection.  Her steroid has tapered to a low dose and we have begun the cyclosporine taper.  The possibility of Graft vs. Host Disease is again an option, and as always a virus is an option too.  Alice does not have a fever...this is a good thing.

She is happy and doesn't seem under the weather, however, we'd rather error on the side of caution and see that she is checked for possible problems.

Typically nausea from the chemo has long past...it's hard to pin point things with Natalie and Alice because of their complexity.  Is it diet?  Is it rejection?  Is it an illness?  Hopefully in Alice's case it's simple and fixable.

Still no news on Alice's biopsy.

Lisy

Poor Alice.  This went on and on.  My camera was in my pocket, when I saw how sweet it was that Evie was helping Alice, I had to capture it.  I then had to wash Evie's hands.  Alice and I must have played ponies and blocks for three hours as we sat on the chux pads and held the pink bucket.  When Tyler and the boys returned from church...Alice said, "I'm all better."  I am amazed at the control Alice has...when she feels the vomit coming, she will hold it in until we snag the closest pink bucket.

From Candace

Hi family and friends!

We've been working hard to get more items on our website this year so go check it out:

seefishcreate.bigcartel.com

There are Christmas cards and great Christmas gifts.


I'm excited to announce that this year we are having a special on our website until December 31, 2012—

100% of the proceeds from the sale of The Gathering of Friends cookbooks,

100% of the profits from the sale of Christmas cards and word art by Candace,
and 25% of the profits from the sale of calligraphy by Julia

will be donated to benefit Natalie & Alice Fish

Read their story at fishesformarrowwishes.blogspot.com

Catch Up...again.

The previous few posts are make up for the week...that keeps slipping away from me.

Happenings at Home

The funny things that happen at home...I love it when the kids are creative and come up with their own games and projects.  This time Natalie came up with her own dance.  She thought she was so funny.  When she showed me the video I laughed plenty.  This can be viewed two different ways...either she is just silly or she is bored and needs to be back in school surrounded by peers.  I think both might be right. :) 

Later Alice joined in, then when Blair came home from school he joined them...it was a ball!  By the time Matthew got home the rest of them were too tired to make more dancing videos.

Natalie has been doing awesome with her homework.  The goal is to have her caught up with the rest of the class by the time the doctors allow her to return to school.  Her teacher Mrs. Nelson who comes to the house three days a week is wonderful and Natalie enjoys the time together.

Tyler and I have been tag teaming the rest of her homework as well as the boys' homework, usually we get this done before the boys go to school in the morning.  We seem to fight over that job, because the other job is keeping the two little girls out of the way...which means all the stinky diapers that come with it.  Morning seems to be the schedule for stinkers; which in Alice's situation, she has more stinkers than one.  Maybe this is more information than desired.  However, if we are willing to play dolls and princesses they are as happy as can be.

Lisy

Mattewlina and Jacksonlina...This is what I found when I came down stairs.  They ran around laughing, thinking they were the funniest kids around.  The princess dresses didn't stay on long, they tired of them quickly...a little snug.

Matthew and his friend Jackson...it's true, they had much more fun being Knights...it's all about fighting and swords.

Mean Knights

Who's Who?

Blair and his friend Tayler.

Alice and Evie all bundled up for a long bike ride with Dad.  They had a great time and I had an even greater time.  I was able to get many things done while my two shadows were absent.

Natalie wanted me to see her elephants:  All in a row!

A nice bonk at recess is good for your character.

Evie loves white powdered donuts from Grandpa.

Biopsy For Alice

Today Alice had a bone marrow biopsy.  The procedure was done in the RTU (rapid treatment unit).  We love the RTU.  It's much faster and simpler than same day surgery.  Anyone who has been to Primary Children's same day surgery knows the fairly lengthy process involved in a procedure at same day.

The nurse practitioner took a small piece of the bone, inner bone fluid and some marrow to be tested.  Her little back is a bit sore, but nothing compared to the past two biopsy's that she has had.  Everything went well and smooth...until it was time to wake from the anesthesia.  She didn't want to wake up.  Being the faster unit...the patients are in and out.  She wanted to sleep longer and be left alone.  I don't blame her.  I felt bad about that.  She did manage to get an awesome nap during the one hour ride home.  When I pulled up to the house I was equally as exhausted.  I just parked the car in the driveway...turned it off and the two of us had the best peace and quit ever.  I will say that some of my favorite naps are in the car. 

The kind of naps when you don't have the energy to unload the car and face what's awaiting behind the door the moment you enter. ;)

We made it home long before we would have--had it been our routine clinic appointment.  It was nice.

I'm trying to keep my phone on me all day in the event that the doctor calls with some results.  No news so far.

While fasting before the procedure Alice told me that her tummy was talking to her and said it needs a ham sandwich.

Lisy

We played bubbles, hide n seek, and Cinderella to help pass time while Alice's tummy was hungry.

Leg Doctor

Alice visited the orthopedic doctor today.  The x-ray indicated that it is healing nicely.  She is able to have her boot off for an hour or so in the evening...and does not need to sleep with it.  She is going to be very happy.  It will be a challenge to get her to wear the boot after enjoying the freedom of having it off. 

Two and a half weeks left in the boot and she is done.  This will make almost ten weeks total for her leg's recovery.

While talking with the doctor Alice explained to the doctor that her leg 'just broke right in half'.  She likes to be involved in the conversations with the doctors.

Thankfully this visit was snappy.  Our fastest orthopedic visit yet.

Lisy

All ready to go see the leg doctor.

Happy Birthday Natalie--Evie Has Parvo Virus

Natalie turned 9 today on the 9th.  She was skipping around all day anxious for the evening to come and celebrate with pumpkin pie and family.

It was a great day.  I asked her what she wanted for dinner, she said "Green Soup"...asparagus soup.  I figured she would say that.  It's one of her favorites.  Instead of cake she requested pumpkin pie.  I can't remember the last time we didn't have a pumpkin pie for her birthday cake.

Our friend Jessie came for the day and played with the kids and helped me prepare a nice birthday meal.  

Yesterday we noticed a rash on Evie's legs, arm and cheek.  I wanted to have it examined so I took her to the doctor.  The doctor is certain she has Fifth's Disease...Parvo Virus.  I have only terrible memories of this virus.  This same virus put Natalie on her death bed several years ago.  It dropped her hemoglobin to 2.8.  She was in the PICU waiting for blood.  Two people worked non-stop for eight hours to match her blood...still it was released as a non-match but as close as it could be with the urgency of her need.

Evie has been feeling terrible, yet she manages.  It seems strange to have such a virus and just go along as normal.  We are holding little Evie more and giving her plenty of fluid.  She doesn't want to eat much.  It's a wonderful thing that her immune system is managing.  Something we will never take for granite.  We are not sure what to think regarding Natalie and Alice.  We hope this bug doesn't amount to much.    

Lisy

Cousin Kennidee made Natalie a darling elephant picture.

The excitement of glass.

Showing Alice the snow through the window.

The dinner Natalie requested. 

Happy Birthday to Natalie!

What's new on Natalie...clip-ons!  She asked for earrings that don't have a needle.

A giant Jerome!

First snowfall of the year on Natalie's birthday.  She, Matthew and Blair had a great time.  They built a snowman.  Before I could take a picture of it...they knocked it down.