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.

Sunday, April 5, 2015

Sunday, March 29, 2015

The Color Festival

Natalie wasn't feeling well today, and was supposed to go on this outing with Matthew and I to the color festival. We made a video anyway so she could see what she has to look forward to next year. If you haven't been to this, it is worth your time to go.

Tyler


Monday, March 16, 2015

Disney Magic



We finally have Alice's wish trip movie put together. What an incredible experience! In addition to the Disney footage we have included our day at Harry Potter Land. We will never forget how wonderful this trip was for our family and especially Alice.

p.s. Nobody got lost!!!!

Sunday, March 15, 2015

Growth Hormone



Okay so when I mentioned in the last post that everybody is healthy, I meant that we aren't dying. We have regular things going on here with fevers and ear aches.  However, we consider that sufficiently healthy, but now I suppose I ought to mention that Alice has been the least affected by the passing bugs.  Wahoooo!

Nut Shell Update

Alice started growth hormone, at first it made her nauseas but we lowered the dose for a week and that helped.  She is now up to her prescribe dose.  In a few months we'll see if it works.  Every inch will help.  She is a champ with the injection.  She reminds us when she needs her shot and she chooses where to take the poke.  Wow, Alice is so amazing, her attitude is unreal.  Thank Heaven!!

Natalie's main struggle is finding a balance between a reoccurring sinus infection, fever, cough-and the effects it has on her neuro status.  Her seizure threshold is always compromised when illness is on board, she's had a rash of mini seizures (feel funnies) lately.  Why the reoccurring sinus infection?  Not sure.  We do know that when on an antibiotic the symptoms alleviate, but persistently return approx. two weeks post antibiotic treatment.  Possibly there is a hidden pocket of bacteria in her sinuses and the structure of her sinuses make it hard for the germs and mucous to drain and for the prolonged courses of antibiotic to reach it.  My mind is full of plenty of theories, but it makes me dizzy to think of writing them all down.

We are trying many non abrasive things, such as nasal washes (when Natalie permits), nasal inhalers, singular and probiotics.  Something about her sinuses that haven't worked properly from the beginning, even aside from SCID.

That's it for now, sorry there are no pictures or videos, I have plenty I want to post but they take time...it will come.  Tyler has Alice's wish video ready to post (hopefully tomorrow).

Lisy,



The rest of this post is boring, but I included it for my records.

March 2nd

Alice went to BMT clinic.  Labs are still good.  Hemoglobin 12.5, Platelets 234.  She is not required to return for two months.  This is super good.
The other day Alice mentioned something about her central line...It seems so long since she had it, I can't believe it has been six months.
We haven't heard word from her second donor, but hope to learn who he is in due time.

Natalie also had a clinic visit today with ENT.  The discussion was similar to that of the time before and the time before that.  Her sinuses are a challenge as I have mentioned already.

February 14th

Happy Birthday Tyler!  Alice started growth hormone yesterday.  She was scared of the needle but once she saw how little it was she found some bravery to proceed and she did an awesome job.


February 2nd

BMT clinic for Alice, she is becoming a pro at blood draws.  Counts are good.  Hemoglobin 10.9. Retic is 3.58, slightly high.

She is all ready for her wish trip in two days.  The doctors have given the green light to travel.



Monday, March 9, 2015

quick post

Hello,

This is just a quick post to let you know we are still here.  Everyone is in good health and we did have a fabulous time in DisneyWorld.  Tyler made an awesome movie and it is almost ready to post.

We have had a handful of clinic visits in the meantime.  We moved two days before leaving for DisneyWorld.  Things have been busy...all in a good way.  Tyler started a new job in the Thanksgiving Point Business area, great commute- 8 minutes!!

As we are feeling more settled and finding more of a rhythm, I will ensure that my next post (which will be soon) is full of detail with pictures and videos.

Thanks again to all who have made our journey much better than it ever could have been.

Much Love,

Lisy

Sunday, January 25, 2015

Watch Out Disney World!


January 12th
Tyler spent the day with Alice in clinic.  Her counts were good and better than we anticipated. Hemoglobin was 11.5.  Her liver function tests thankfully dropped drastically.  They were outrageously high at our last clinic visit, we think it was due to the positive flu test she had.  Viruses do crazy things to lab values.  With that said we are keeping a watch on her liver.

Alice doesn't return to clinic until February.  The doctors feel confident that she can go four weeks between visits.  Hooray!


January 20th
Today Alice had a follow up with ophthalmology in Riverton.  Alice has bits of cataracts in her eyes. She sometimes complains of cloudiness in her eye, thus the cataracts.  We have been watching her eyes over the past few years.  Thankfully it isn't too much worse than the last time we checked, but could still worsen over time.  If so she will need surgery to fix it.  Thankfully this is something that is very treatable and shouldn't impair her vision with treatment; steroids and other medications could be the culprit.  Also she had some eye issues when she had the chicken pox spread into her right eye, which also might contribute to some of this.

WOW... there are plenty of extra issues that come along with chronic illness...SCID kids are famous for many side issues.  Ironically much of this seems to be small stuff up against Chemo and Bone Marrow transplants, GVHD, etc.  However, they are big issues still and need attention.  We often wonder how skewed our perception of reality has become.

I will say there is nothing wrong with thinking and believing your life is peachier than what it may seem from the outside.  Alice has been a great teacher of attitude, she has the best life anyone could ask for.  She loves it all; although, the times she does complain are so little, but surely those circumstances naturally deny pleasure.


COMING SOON...Alice will fulfill her long awaited WISH.  She and her family will be going to Disney World.  It is going to be wonderful! We are ready for a great time and almost wish for it to not come, because then it will be over.  But no worries, Tyler will have a great movie of it all and it will be cherished over the years.  Stay tuned to see her wish in action.

Love you all,
Lisy

p.s. I will be honest, I have felt nervous to go to Disney World because I worry Evie or someone will get lost.  I plan to put waterproof wrist bands on the little ones with my cell number written in black permanent marker.  I am open to any other tips in this matter. :)

Thursday, January 8, 2015

Overdue Update

Another big gap between posts.  I am finding it very difficult to remember everything when I post once a month.  Unfortunately the reality and emotions get left out when I wait so long in between posts, for two reasons...I don't have time to be detailed, and I can't remember specifics.  I am certain if I posted daily, this blog would show more of our true roller coaster feelings.  You are getting the bare bones lately, I am so sorry.

My mind is a constant race track of information and thoughts regarding Alice (as always) to write it all down would be impossible.  I can hardly get the thoughts and words out of my brain in regular conversation, so to post about it is a hefty task.

Here is the latest, from most recent back.


January 8, 2015

Ear tube cleaning for Natalie with ENT.



January 7, 2015

Natalie had a follow up with audiology for her hearing aid.  It was mostly counter productive because she hasn't been able to wear her hearing aid much since she got it, due to her ear draining.  We did discover her drain tube is clogged.  Tomorrow we will see the ENT and have it cleaned out.  Then we can benefit from the hearing aid again.



December 29, 2014
Good News!
Alice went to BMT clinic today and her counts were great.  Hemoglobin was 11.2. This was a pivotal time for her, being two weeks post another blood transfusion.  The fact that she held strong indicates that she is making more cells again on her own.  Just in the past two weeks her Retic percent has improved.  This is the percentage of new production of red blood cells.  This number was not looking good in the recent past.  Her Retic today was .77, and just on Dec. 5th it was .16.  Normal range is from .50-1.50.  Huge improvements.

So why has she been struggling lately.  Still no definite answers...was it a virus we couldn't detect? Was it the first donor and the second donor fighting?  Is it complications still from switching blood types? Who knows!  Alice is improving, but still things don't seem right.  She continues to puzzle everyone.  However, we are extremely thankful to see that she is making red cells again.

By the way her recent chimerism was practically the same as the previous chimerism. Therefore, not providing a conclusive explanation on the donor 1 vs. donor 2 scenario.

Her liver function tests remain a concern.  This will be addressed in our next clinic visit.  She has random episodes of emesis (vomit), with no rhyme or reason.

Despite how this may all sound, Alice still thinks her world is fantastic and has no complaints. Everything is beautiful and lovely to her...and she makes our lives so full of goodness.


December 24th-31st, 2014

My oh my, what a hard week.

Tyler, Natalie and Isaiah had the flu (H3 Influenza A).  I have never seen Tyler so sick, in fact on Sunday, Dec. the 28th Tyler asked me to take him to the ER, he was in terrible pain, coughing up blood.  Breathing was a struggle for him.  After a huge bag of IV fluids he perked up a bit.  Tyler also had some pneumonia, a bad combo.


Natalie had a terrible time as well.  We think she also had a sinus infection going on, or something. Her cheeks swelled so big and she started to have terrible pain and incredibly high fevers.  She too spent a day in the ER...on Monday, Dec. (29th).  She received a bag of IV fluid and it helped speed up her recovery.  Natalie was very good to keep drinking, but IV fluids work wonders.
Poor thing, exhausted with swollen cheeks.
In fact while Natalie was in the ER at Primary's, Alice was upstairs at her BMT clinic visit...so we had to recruit Grandpa Fish's help.

In the end Tyler and Natalie got some antibiotics for their secondary infections and are doing MUCH better.

I felt so bad for Tyler, because I couldn't even take care of him...he was on his own.  I wasn't keeping track of how much he was drinking.  I was so busy controlling Natalie's fevers and symptoms etc. and keeping Isaiah hydrated and holding him non-stop.  Poor little Isaiah couldn't sleep.  We had to suction his little nose night after night and keep his fevers controlled.

Anyway, it wasn't our best week ever, but we are thankful it is over.  Blair and Alice had minor symptoms.  It's a huge blessing Alice didn't get more sick.  I was praying that she would be protected. So thankful we are!
Minor symptoms for Alice..believe it or not.  


December 22, 2014

Bone Marrow clinic for Alice.  Hemoglobin is 12.0.  Still up from her transfusion on the 15th. We will see how long this transfusion will sustain her.  However, with the good change in her Retic we should see these good counts last.  Next week will say a lot.


Gingerbread Temples



December 15th, 2014

BMT clinic visit.  Alice got another blood transfusion today.  Her hemoglobin was 6.8.  She was able to get her blood before the clinic closed.  Also she made it back home in time to watch her cousin Addie's dance performance. She loved every minute of it.
Very good news.  Her Retic count was high at 3.50.  Yay! This means her body is producing red cells again.  What a relief!!
To be more accurate, we don't know if in fact she wasn't producing red blood cells or if they just weren't leaving the marrow due to some process of destruction within the marrow...I suppose as long as her numbers look good and she is doing what we want, we won't go forward with a bone marrow biopsy...phew!


December 13th, 2014

As a family we were able to be a part of Delta Airlines' flight with Santa.  It was a great time.  Delta employees spent countless hours decorating the international terminal and plane.  They totally cleaned a disinfected a 767 jet so the children could taxi around the airport as if they are going to the North Pole...upon exiting Santa was there to give them a gift and lunch was provided.  It was a great time!


















December 10th, 2014


Alice visits Endocrinology.  What a valuable appointment this was for Alice.  There was so much information given to me at this apt. I feel like I should have recorded the conversation with the doctor.  Basically, after some blood work, it is evident that Alice no longer produces the hormone called 'growth hormone'....because of what she has been through with chemo and transplants.

Thus explains why she has stopped growing. Without treatment she will be 3 foot something full grown.  If we treat her with growth hormone and she responds she will have the potential to be somewhere between 5'2" - 5'4" full grown, according to her genetics.  Sadly the treatment is a daily injection with a needle until she is 17 years old or done growing.  It's a big price to pay, but we feel will be worth it. The good news is that her bone scan indicates that her body thinks she is three and a half years old, which means it's hiding some growth and once she is given the supplemented hormone she can gain that much needed growth.  We plan to start the growth hormone in the next few weeks.  It will be a struggle for a while...I imagine at some point she will be able to do it on her own.  Maybe in a long while.


December 8th and 9th, 2014

Natalie received her hearing aid December 8th.  She was so excited.  She said she could hear better.  The audiologist will do a follow up hearing test in a month or so.


On December 9th Natalie's right ear...same ear with the hearing aid, started to drain.  She hasn't been able to wear her hearing aid much at all because of the amount of drainage.  It keeps clogging the hearing aid tube.

December 8th-- Alice's hemoglobin is 8.3.  It's dropping again.  We are worried that she might have developed HLH again.



EXTRAS

Blair called me from school and said he lost a tooth.  I told him congratulations.  He was a little worried and asked if the tooth fairy would still bring him something even if he didn't have the tooth. I asked why he didn't have the tooth, and he told me that he accidentally swallowed it while eating his school lunch. Opps!

Matthew lost a tooth two days later eating a carrot.  He managed to not swallow his tooth, but had to see the dentist for a cavity.  I think swallowing a tooth would be much better than having a cavity filled.

Alice lost a tooth this month too due to natural causes...but unfortunately she almost lost another tooth due to unnatural causes.  We took the kids sledding.  Alice and Evie were plowed over by another sledder.  Poor girls were banged up.  Alice's tooth was knocked loose (thankfully a baby tooth) her lip was gigantic.  Evie came out of it with a terrible black eye.  I asked them if they might still want to sled another day...they weren't keen on the idea.  Later Tyler and I were mad at ourselves for even taking them in the first place.  We thought it would be a fun family outing.  Next time we will stick to the tiny hill in our backyard.  Although Natalie, Matthew and Blair had a blast.








From Natalie...someday??



Video of Alice holding Isaiah


Saturday, November 29, 2014

Discharged from BMT and a Curve Ball

Somehow an entire month has passed without a post.  That is a new record for me.  I can think of plenty of excuses as to my slack, however, I'll spare myself and just do my best to update with as much accuracy as I can.

I will post most recent things first and then go back.  If you don't have a lot of time then just read the beginning of this post and you will have the current update.  There will be more news to shed this week regarding Alice's situation when pending lab tests return.

Hopefully this post isn't too difficult to follow.

Lisy

November 26th
Today Alice had her follow up visit with BMT since her red cell transfusion last week.  Her counts held steady over the past week thankfully...(hemoglobin 11.2) but still no results on her chimerism.  Those results should be available next week.  Unfortunately all the viral labs came back negative.  That seems odd to be un-thankful for a negative viral panel, but in this case we were hoping her recent crash was viral related, rather than donor 1 retaliating against donor 2, in which we worry might be happening.  The chimerism will shed more light on the possibilities of this.

The near future plan is to check her blood counts weekly, and if anything drops we will been seen in clinic as needed.


November 25th
Natalie met with neurology today to review her medications and her seizure status.  Over the weekend prior to her appointment she had some small seizures, as she was battling a fever.  Tyler and I decided to administer nasal versed to stop her from the possibilities of having a major seizure, after receiving the versed she slept for a while and once the Advil/Tylenol broke the fever she seemed more stable.  The plan is to help Natalie become seizure free for two years before we can consider altering or lowering any of her seizure medications.  Neurologists are running a new study in which they think one's seizure threshold can be raised significantly the longer one goes without any seizing activity.  The idea is that the brain will adjust accordingly, and in the meantime the seizure medication only artificially raises one's seizure threshold...in Natalie's situation we are grateful for the protection, while we hope her brain continues to heal.  Every person has a threshold for seizing, in Natalie's case due to illness, etc. (etc. translates into a long story) her threshold has been compromised, leaving it lower than ideal.

Also today Natalie visited Immunology.  We discussed her future care and the possibilities of further allergy testing in reference to some medications that she has reacted to in the past.  We discussed her fever and the possible source.  We expect that our visit with ENT next week will provide more helpful information on this subject.  It is possible that she has a chronic sinus infection...leading to a constant post nasal drip.


November 24th
Alice had an orthopedic appointment today.  The doctor said her arm is looking better but still needs to heal more.  She is supposed to wear the brace for another month.

Alice no longer needs instructions from the X-ray technician, this is second nature to her.

November 20th
Natalie meet with audiology again.  We picked out a hearing aid and it will be available on December 8th.  Natalie is SO EXCITED.  It seems once we decided to get her a hearing aid her hearing got worse.  I think it is because we are noticing it more, on her end too.  I hope that her hearing will not continue to worsen over time.  Another thing I really don't like about chemotherapy...these drugs can affect so many things, and worsen over time.

November 19th
Today Alice received a blood transfusion.  Her hemoglobin dropped even more since Monday the 17th.  Her hemoglobin was 5.8 today.  It took some time to match her blood, so we finished the day in ICS; because the clinic closes around 5:00 and we hadn't even started the blood.  By the time it was all done we found ourselves back home around 11:00 p.m.  It has been several months since we have been in ICS.  Of course it was lovely to see so many of our friends again.  Alice was in heaven and wanted to settle in for a while.  When I told her we weren't going to stay the night she was sad.  Silly girl!  After the transfusion her hemoglobin bounced back up to 11.2.
We found Emily.

Her expression when she heard she needed an IV placed.


Bring on the toys.

And the Barbie house.

Getting blood.

Guess who works in ICS now...our darling cousin Erin. Yeah!

November 17th
Alice has been noticeably more pale lately.  We called the doctor and had a CBC order sent to Riverton lab to check her hemoglobin.  We suspected it would be low, and it was.  It was 7.0.  This is considered a critical value and the doctor was notified immediately.  I called bone marrow to inform them, as we have been discharged from their services...apparently not anymore.  We discussed many possibilities as to why this sudden drop in her blood.  They suggested it might be a virus but are leaning more toward the idea of possible complications between the first donor and the second donor. We sure hope this isn't the case.  The doctors don't want to discuss too much with us until they have more information.  In the meantime we will find her some blood and run more tests.

Look how Alice's hair has grown.
This is how she wanted it styled.

November 9th
Happy 11th Birthday Natalie!!!  We can't believe you are 11.  Wow!  Time is flying.  This time three years ago you were getting baptized and preparing for a bone marrow transplant.  Oh so much can happen in three years.  We are proud of you and how far you have come in your journey to better health.  Thanks for being a great example to all of us in so many ways.  You are a beautiful girl and we love you!!

Grandma Schellenberg found this awesome birthday hat.

Cousin fun!


October 22nd/27th -- 1 YEAR POST BMT REVIEW
Alice had her one year post bmt clinic visit, including a phycology evaluation, a hearing test, and dexa scan (bone density scan).
Counts are as follows: Hemoglobin 10.7, Platelets 221, ANC 3300
The dexa scan indicates Alice has poor bone density, which comes to no surprise.  The physcology evaluation was positive.  Her hearing test was great.

To our surprise they discharged us form the regular services, we are graduated to long term bone marrow care.  This means our next follow up visit with BMT is next summer.  What?!?!  Alice is doing so well, she is stable and we are excited to move ahead.  There are some loose ends to tie off with some minor things.  Hopefully minor.  Her ferritin levels are extremely high.  This is likely a result from receiving so many red cell transfusions.  The body can't rid of iron from donated red cells...therefore the excess collets in the liver.  As long as her ferritin level continues to take a downward trend we will just watch it.  If it gets questionable then we will need to treat it...treatment for this is tricky, and isn't typically done in children.

Alice's whole blood chimerism has been 100% donor #2, but with some new showings of her T cell chimerism being 80% donor #2 and 20% donor #1.  The doctors are not worried and seem to be okay with this.

We have plans to see endocrinology soon to discuss her growth status and other things (things that have taken a back burner).

Alice is currently off all medications.  She takes a calcium supplement, a multi-vitamin, and plenty of vitamin D.  We can't believe this is actually real!

We have allowed Alice to experiment with gluten again, so far no complaints of tummy aches.

To think that we are done with bone marrow for a whole year is strange and hardly real to us.  Alice's healing has taken SO SO SO long it seems, and to now be at this point is bizarre.  Being healed is quite relative in SCID kids.  A SCID kid is never healed/cured, however, having a better quality of life is more appropriate to say.


Dexa Scan at the U of U

Hearing Test

We found Bo Bo the Bear.
Having Lunch
Missing the Broviac Line on days like this
Saying good bye to Sandy and Pam for a whole year.
She thought this was a great place for a picture.
See you in a while hospital!


October 31st--Halloween
I have to admit that I was a party pooper this year.  I told the kids if they want to dress up for Halloween--they are on their own.  Natalie created her costume piecing things together, Matthew wore his costume from last year, Blair wasn't sure what to do...so I did help him, Alice and Evie decided to do what they do best each day and call it Halloween...Princesses!  And little Isaiah of course was something too.

A Pirate, A Chemist, and A Purple Morph


Isn't this a natural look for him...we went to a chemistry magic show at BYU and Blair was in his element.
He Loved it!

Tricker treating with cousin Brandon.
Every day is Royal at our house.

 Little skeleton boy!



October 20th

Swimming for real for the first time ever.  She went under water!!!  This was an exciting event for Alice.  She did great.


Still the best swim teacher ever...thanks Nicole.

Evie and Addie playing during Alice's lesson.


And More Pictures...

I love posting pictures of this little man.

Dinner Helpers

The busy Momma trick...who hasn't done this?

Getting stronger.
Wishing that were me.


Discovered bubble blowing.
I love him.

These goof balls tried to convince me into letting them drive these through Wal-Mart.

Her favorite boots...I was giving them away, they are too small for Evie now, she couldn't part with them so I made her a deal to take a picture...it seemed to help. 

Alice with Aunt Jamie. 

Evie, cousin Ava, and Alice
I love this picture because first of all you can really see how short us Fishes are...Ava is two and a half.  Evie is three, Alice is Five.  And I love it because Alice is pouting about not getting to stand in the middle for the picture.  I caught a moment of life in it's real form...so great.