The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Monday, December 3, 2012

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 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 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 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 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.  


1 comment:

  1. Lisy, What a beautiful tree and what priceless memories. We are always praying that the right answers will come! Your girls have great purpose...they have a FULL life ahead of them...answers WILL come!