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, June 24, 2013

Clinics, Inpatient Stay, Alice's Donor!



We are still here!!!  Just behind.


I will give a quick overview of what's going on, then break down the details by separate days/events.

First of all we are adapting more to the hard news we received recently.  We are also learning more about what needs to happen and why Alice is in this position.  It is evident that her body still possess original antibodies from before transplant.  This is the main, possibly only, reason why she requires more therapy/another transplant.  In our minds we can't imagine having done a more aggressive conditioning (chemo) before transplant.

The type of SCID (Leaky SCID) that Natalie and Alice have is very difficult to treat because of all the autoimmunity involved.  It can also be known as Omens Syndrome.  It's so hard to explain, basically it's hard to rid of all the original antibodies, even with chemotherapy.  The truth is...there isn't enough information on the subject, each case is individually different in the ways the malfunctioning antibodies present themselves.

We will be working with our team here in Salt Lake as well as some other SCID experts from UCSF and Stanford to find the best solution for Alice.  More news to come...SOON.

Going back to catch up:

Friday 7th--ZOO
The hospital had a special evening at the zoo, after hours.  The kids had a great time.


















Monday 10th--Alice clinic
Today Alice received IVIg, bad news was delivered as all her counts dropped.  The doctors said a second transplant is back on the table.



Tuesday 11th--Make A Wish Builder Dinner
Natalie has been asked to help participate in the Salt Lake parade of homes.  A builder is going to design a bedroom in a parade home themed after her wish to Hawaii.  We got to have dinner with the builder and home owner, discussing room design.  It was great.  Natalie will get to preview the room before the public.



Thursday 13th--Alice gets blood in clinic
Her hemoglobin was 6.  Time for blood.  She slept through some of it...and played through most of it.  The darn blood pressure cup is a bugger and she does not like it anymore.
Alice loves mustard and Mayo.


Friday 14th--Natalie Immunology Clinic
Natalie had a follow up with Dr. Chen.  She is a wonderful doctor.  Natalie's ears are becoming infected again.  We decided to give Natalie a little more time, as I have some natural things I want to try first before jumping back into antibiotics.  Dr. Chen is very supportive and understanding.
They were cold so Dr. Chen gave them some gowns to wrap in.  It helps Natalie so much when she has company on her boring doctor visits.  Thanks for coming Blair.


Saturday 15th--Alice gets a fever-inpatient stay
At 5:00 a.m. Natalie cam to our room informing us that Alice can't breath.  We knew what was going on.  Alice gets worried and worked up, starts crying, can't stop, then can't breath because she is so flustered.  She will cry quietly for a while before anyone hears her, then it turns into a panic cry.  I checked her temperature, and sure enough she had a fever.  103 degrees.  She said her ears were hurting.  I called the hospital and Tyler took her in.  The doctors ran cultures and started a broad spectrum antibiotic.  She was given a fever reducer and was fine the rest of the time.
Sometimes I wonder if she fakes a fever, just so she can play in the hospital.


Monday 17th--Alice comes home
Alice comes home from her three day hospital stay for a possible ear infection...she will remain on an antibiotic.

Tuesday 18th--SCID lunch
I went to lunch with some friends, my SCID friends.  There were five of us, we all have SCID in common (different forms of SCID), and are in different phases of our journeys.  There are only so many of us in Utah, so to be together was awesome.  I wish I had taken a picture.  We were too busy talking of course.  Two of these sweet mother's just lost their babies to SCID.  It was sweet to listen to them talk about their cute babies, and remember them. I was touched by their strength and courage.

Thursday 20th--Natalie ENT clinic
Natalie met with Dr. Muntz again today, clinic was at the U of U hospital.  Dr. Muntz said her ears look worse and advised that we place drain tubes again.  It breaks my heart to think about it.  We have been working so hard using other remedies to avoid this.  We are starting to wonder if her eustachian tubes might be damaged.

Monday 24th--clinic, Natalie has a fever
Alice's counts were okay today, except her platelets...she received an infusion of platelets today.
counts; ANC 2200, Hemoglobin 9.2, Platelets 5.  We will do Neupogen every other day again.  Alice had a hard time in clinic today.  I did too.  I was tired and less patient.

Tyler and I had been up with Natalie during the night, as she had fevers and aches.  We assume her ears have worsened.  It's time to start the antibiotic again...DARN!

We have to monitor her fevers so close as she will seize easily.



And Last but not Least...Meet Alice's Donor Michelle!!


(Her initial email to us)


Ms. Fish,



My name is Michelle, and I was the donor last year for your
daughter's bone marrow transplant.  I just received your information
from the Colorado Marrow Donor Program and would love to hear how you
all are doing.



A bit more about myself... I am completing a residency program in
pediatrics at Children's Hospital Colorado, about to start my last
year, and will be a pediatrician in the Air Force when I finish here.
I got married last year to my husband, Dave, who is a sheriff in
Denver, and it has been a great year for us.  We love to run, bike,
hike, and do just about anything outdoors.  I grew up in Southern
California and just moved back to the West after finishing medical
school at Vanderbilt.  My family is mostly still in California.



I hope you all are well and look forward to hearing from you.


Best,
                                                                                   Michelle  


Michelle with her husband Dave.



Michelle with her Mother and Grandparents

We are so thankful for Michelle, it was so exciting when we received her initial email.  We read it five times at least.  Then when we saw pictures it was even sweeter.  We are incredibly grateful for her.  Thanks Michelle!

Alice said, "That beautiful Michelle saved my life."



Lisy

Here's the Wallet!...I told Alice to wait until I got the camera, once I knew what she was going to do.  If you watch close, you will see Tyler giving Evie a second hand apple core.  She isn't picky...poor thing.

7 comments:

  1. That video is funny! Tyler is so nice, it's got to be hard to ever be upset with sweet Alice, she is so cute!

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  2. How amazing to get to see Alice's donor Michelle! What an awesome person!

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  3. Thanks for keeping us all up to date even when it is so hard. We sure love the Fishes!!! You are in our every prayer, truly. My favorite line from this post is Alice's abt Michelle... She is beautiful in so many ways.

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  4. Sorry about the hard day...but oh my!!!! That return is priceless!!! We pray for you continually Fish Family.

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  5. I have a song for you. It is video 6, at about 8:55 minutes. :)

    http://www.youtube.com/watch?v=di_7S7QSHZg&feature=share&list=PLDCE38ECB082AFA9A

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  6. How wonderful that you are able to get in contact with the donor!! I hope all is well, it's July 7th and this was the last post <3

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  7. Thanks for posting. The video made me laugh so hard. "In my baaackpaack." Ha ha. So fun to see snd hear from the donor

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