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, December 27, 2015

Summer 2015 (Part #3) The Yard

It was a busy summer, and instead of describing what we did, we filmed it. This is a time lapse of putting in the yard.

All the vitamin D was just what our family needed.  Our healthiest summer EVER!  Isaiah got plenty of nutrition as well...can't find the picture but he often was caught eating dirt.




Friday, December 4, 2015

Summer 2015 (Part #2)--Summer Overview



The summer has come and gone...(and by the time I actually hit publish on this post, winter will have come and gone).  I can't even recall all the doctor's visits and details I'd like to post about, and my trusty phone calendar has failed me, so I'm on my own with this one.

I definitely went over board on posting pictures...but I know when I print this blog out into a journal, we will be glad for all the pictures.


June 3rd--Matthew's Birthday
Happy Birthday Matthew!! 10 years old.  Matthew isn't a huge sweets guy, and wasn't interested in a traditional birthday cake.  He requested a rice crispy cake.  We had a few family members over to celebrate.  It was low key, but he enjoyed it.  In the past, rarely did we have big birthday parties with lots of friends...maybe that's because our situation didn't always allow gatherings.  In fact my memory seems to recall a few of Matthew's birthday's spent with only some of us, as Alice and Natalie seemed to be in the hospital over June 3rd. Matthew is such a good boy and was always so understanding.  We love you Matthew!


Cousin Kymball and Matthew
.... as you can see I still made a chocolate cake :)

Grandma Schellenberg's party for June birthdays.

Another special thing that happened on Matthew's birthday--Amberly (Tyler's youngest sister) donated her bone marrow to Jamie (Tyler's oldest sister).  Jamie received her transplant on June 4th. Jamie's journey has been an up and down battle.  She was diagnosed with cancer about a year and a half ago.  She has been through many treatments, with little response to the treatments.  Recently she completed a different treatment and finally her cancer has responded in a positive way.  Her latest scan shows no cancer! Such a big story to share in a single paragraph...but we are so happy for her and her family.  Still plenty ahead in her care and more treatments to go, but this is fantastic news.  

The Fishes are no strangers to Chemo and transplants...unfortunately.  I'm thinking we mistakenly stood in the wrong line in heaven, not realizing we signed up for the more challenging course, likely it was the shortest line and we thought we were going to be ahead of everybody else....duh!!!  We failed to read the bold print sign above the line that read, "Caution".

Beautiful Ladies! Jamie's Transplant day.
Jamie on the left and her sweet donor Amberly on the right.



June 8-June 12--Camp Hobe'
To start off the summer the kids went to Camp Hobe, and yet again they absolutely loved it.  Next year will be their last year as eligible campers.  They are already looking forward to next summer.  I am so thankful for Camp Hobe.  Certainly camp has made a difference in Natalie's healing and has proven to be a good thing for the boys as well.  Alice was able to participate in day camp this year. She too had a great time and made some new friends, especially one little friend named Pipper in whom she talks of consistently.  We already knew Pipper's family and love them.

Mid-way through camp
Picking up the kids--time to go home.  Natalie didn't want to go home she had so much fun, infact when she saw me she said, "Oh not you."  I was missing my kids all week and they didn't seem to miss me a bit.
Natalie was super excited to see Isaiah.  Natalie, Matthew and Blair all said the only hard thing about camp was being away from Isaiah.
I tried to get more pictures of Matthew and Blair but they were hard to catch.
I was thankful that cousin Mason came to help me pick up the kids and all their stuff.
Mason is holding Alice.
Natalie with her counselors...wonderful ladies.
Natalie's camp friends.


June 15th--AF Canyon Half Marathon
Race day! AF Canyon's run for cancer.  This year Tyler, his two sister's, and niece all ran for Jamie! They did awesome.

A few weeks prior to the race...Jamie was just recovering from a Bone Marrow Transplant.


"Jamie's Joggers"
Heather, Jessica, Jamie, Taylor (Jamie's daughter), Tyler and Amber (Jamie's marrow donor)
What a team!!

Yeah, Go Daddy!!
Tyler is amazing and nuts--he wasn't going to race, he hadn't trained, but the night before the race he decided to run...and did well in fact.  Who does this???? I think it's crazy! And I think I'm slightly jealous. ;)




July 4th
I remember Natalie was sick on the 4th of July.  So just her and I, with Isaiah stayed home from the family festivities.  Initially she was really sad to miss out on such fun celebrations, however, we ended up having a very memorable 4th of July in the end.  It was nice and quiet.  We watched a great movie on my bed, it actually was quite patriotic, surprisingly.  Then we laid on the driveway in the warm summer heat and watched all the fireworks around us in the distance.  Our whole street was dark, everyone gone, and their we were lying on the cement in the dark viewing all the explosions surrounding our eye's sight.  I began to tell Natalie that our country became free in a very similar setting...with booming fire filling the air and explosions all around.  Although then the feeling was different.  We imagined how frightening it would be to feel the rumble of explosion in a setting of war, and here we were lying so comfortable on the cement openly exposed to all the booms, feeling so thankful and blessed.

Prior to the evening's events a neighbor asked us to help another neighbor's dog out to go potty at 10:00 pm. Being that nobody was home on the street--we had it all to ourself, and sure enough we had fun.  Mike our neighbor left his Jazzy for us to cruise down the street with to let the dog out.  We zipped around in that Jazzy in the dark and laughed at how funny we felt.  Natalie thought it was the funnest thing ever.

Later I asked Natalie what her favorite part of the night was...it was the Jazzy! Possibly this will be her memory of the Fourth of July when she was sick...not bad!


July 19-21---Wedding (Isaac and Alex) / Schellenberg Family Reunion
My Nephew Isaac got married the day before the family reunion, so from the temple to the shrubs all in one weekend. Camping, camping, camping....so fun for the kids.  Fun for parents too, but even more fun with a camp trailer or cabin.  Fishes always leave early.  But we are just lucky to go.  In the past camping wasn't always possible, and the times we did go, the girls were super sick.  We have some difficult memories of camping with the girls, despite those challenges, the best part was being with family.  So many great memories are made while camping.  We love family!! This year camping went pretty smooth, nobody got sick.
I went a little crazy posting pictures, I was having fun posting non hospital pictures.  It's amazing how my blog has gone from all hospital things to normal life things...in a matter of 4 years.  My younger brother got married since I started this blog, and other memorable family events, however, all the while there was so much hospital life happening that regular life things weren't recorded.  So now it is fun to be able to touch on regular life things more. :)

Isaac and Alex's wedding
My parents, siblings, and the grandchildren.
This is the group that went camping...you can imagine the fun!  Something entertaining happening at every moment.  It's quite amazing we all came home in one piece.













Joe, Josh, Justin

Josh and Jake
Brenda and Albie
Tiffany and Tessa
Utah--A Beautiful Place to live.

Jeanette, McKenzie, and Tami...three of my five
sister-in-laws (Schellenberg side).
Just missing Amy and Tiffany.
Lucky me to have these ladies in my life.

Nursery Corner, Jake and Ryan

The groomsmen , and some.

Jean, Delsen and Heidi
Isaiah with his cousin pals





Martin and Karen (Dad and Mom, Grandpa and Grandma)



Tiffany, Justin, Jeanette, Hailey

ahh...newly weds.
...and they are off.



Camping in Fairview Canyon





These boys spent the night in those things...it was a cold night.









             
not twins....
cousins.

Snazzy outfit of mine...Tami and I getting ready for a walk to the lavender meadow.


Jonny, Josh, Joe, Tyler and Jake

He was in heaven, and the rest the kids had to beg him to share....he's tried
 to talk Tyler into getting a motorcycle, hasn't had any luck yet.

  













   



Definitely Double Trouble.


Grandma and Grandpa


Tyler Schlappi brought his horses...good rides.



Believe it or not, the most injuries during our camping
was not the wild ATV rides, the horses, the dogs or the guns, it was the game of baseball.



Is this safe?


Bored? How about some log rolling.
          
Hmmmm....not sure how much gun safety is going on, at least in
the picture they are facing the barrels up.
                                     


Birthday celebrations.


Natalie loves horses.





Are we short or are we short?  These girls are Alice's age, one even younger.

The teen table

Gathering under the shade...makes for some fun conversations.

At every family gathering....Settlers of Cataan.

Joe and Amy's 


Really, do we need a fire that big?



July 27th--Alice raises her Star at the Make a Wish house
This marks the complete act of Alice's wish.  She was able to raise her star to the ceiling to join the thousands of other wish stars that will stay there forever.  She was so excited.  It was a sweet moment to reflect on the amazing wish that Alice was granted and especially to remember the gratitude for the people who made the wish happen.  It was a little sad to know that her wish journey had come to an end...so fun it was!! Thank You Make A Wish!!
Alice's Make a Wish Star...she decorated it plenty!  Cute Evie admiring the star.


Alice, Paige, Cooper, Everett

Wishing Pond


Alice, Tami, Hyrum

Amber, Grandmother, Alice, Cooper
Matthew you are so cute.


Addie, Lisy, Alice















August 2nd and 8th--Happy Birthday Evie and Alice!
Evie turned 4 and Alice turned 6.  We decided to make things easy and have a combined party...they love all the same stuff and have all the same friends.  I love how close they are.  So here's to a 'My Little Pony' party!
Pin the tail on the pony
Pony Pinata'



So many cousins and friends
Pony cupcake decorating
Delectable 

          


August 11th--Happy 1st Birthday Isaiah!
I really can't believe my baby is already one.  That happened so fast.  He is the sweetest thing and so easy going.  Can't imagine our life without him.  My favorite time of day is morning when he wakes up. He is so happy to see us, all smiles and giggles.  He wants to come into our bed and wrestle around, so we smother him with kisses and hugs...he loves every minute of it.  He is so cuddly.
A couple weeks after his first birthday he started walking and then a week or two later he was officially done crawling.  Happy moment of a new found freedom for him.  
Tyler and I regularly talk of how much joy he has brought to our family.  Words can't describe how thankful we are to have him in our family.

Matthew made this darling sign for the front door.
Big Boy!



I love my baby!!
Yummy candle.

Chocolate is the best.


Hanging with the Chandler's on his actual Birthday.





August 19th--School Kids
Back To School...Natalie in 5th grade, Matthew in 4th grade, Blair in 3rd grade and as for Alice....It's true, Alice has made it to Kindergarten.  Honestly there were moments in her short life when we wondered if ever she would make it to this point.  She is so happy to go to school.  She has no problem making friends and loves every bit of it, especially riding on the bus.


Couldn't be more excited for the big day!


Alice has plenty of helpers and they do take good care of her.

Alice loves riding the bus...it's a big job for her to get on the first step.


Evie, next year is coming...for Mom too fast, but you are ready.




Health Update
As far as doctor appointments go, we have been fairly consistent with the usual routine as of late...follow-ups and routine visits.  Not a bad thing, nor should I complain with such little medical drama in our lives.  It's wonderful!  We have had some ear infections with Evie, fevers with Alice and Evie, some with Isaiah.  Natalie has some coughing off and on.  Alice would vomit out of the blue and is fairly consistent with her inconsistency, however, this only happens every two to three weeks. The majority of our summer doctor's visits consisted of Hormone therapy for Alice and Natalie. Some ENT visits for Natalie.

I actually think this has been our healthiest summer ever.  We were able to spend a lot of time out side working on the yard, maybe having vitamin D the "real kind" was the best thing for our health.

Some HUGE good news for Natalie---I think it's huge anyway---I started Natalie on a more natural approach to caring for her chronic sinus infection that contributes to her terrible cough and periodic fevers.  I wasn't sure what to think at first.  But I was so done with putting her on strong antibiotics every 6 weeks because her sinuses.  Honestly the pattern was predictable, and I truly hated the fact that she couldn't get better without antibiotics...however, I was stuck because if she didn't take the antibiotic it would get really bad, and the fevers would set in, causing her to have seizures.  The process was troubling, and repetitive.  My dentist brother-in-law, suggested trying some nasal spray called XLEAR...it's not prescription, and not cheap either....and the truth is I don't even care at this point the pricey cost.  Apparently XLEAR is made with an ingredient called Xylitol. A natural sugar that bacteria devours, but cannot digest, because the bacteria cannot digest it, it dies. Somehow it blocks up the bacteria's system and they starve to death. It's interesting, look it up for more details. Anyway as long as Natalie uses it at lease twice a day she is fine, although, when we fall behind her cough and congestion come back.  Literally since we started the XLEAR she has not had one single dose of antibiotic. WOW! Her longest antibiotic free record since birth...6+months!!

Some bad news for Natalie, we learned early in the summer that her body does not make estrogen. Her ovary function is non existent.  We knew this would be a likely possibility with the chemo therapy that she required, but always hoped it wouldn't be the case.  Now that we see it is reality it has required us to contemplate her future in more depth.  She will require estrogen therapy, which is very important in helping her develop into a woman and also important for her bone development. Luckily this will not require daily injections like growth hormone...rather she will wear a patch or take some version of a pill.

Although we can mend the missing estrogen, we cannot mend her ovaries.  This is difficult for us to face as her parents.  Likely Alice will have the same situation.
Tyler and I have experienced the sweet blessings of having a family and bearing children, and to know that our daughter(s) cannot have this same opportunity is heart breaking.
Some time ago around the dinner table we were discussing with the children why it is important to have families.  We talked about how Heavenly Father needs us to have children and teach them about the Gospel so that they can be good people that serve God and continue to have families of their own. Alice looked at me and said, "Mom, what happens when a Mommy and a Daddy can't have children?" I was surprised by her question but felt it a perfect moment to talk about the reality that lies before her.  Also an opportunity to teach more about what a family can be and how this might directly affect our family.  I told both Natalie and Alice that because of all the things they have experienced with their illness, they may not be able to have children of their own.  Their faces looked puzzled and confused but I needed to say something.  Tyler and I feel like if we gradually talk about it, when they are older it won't come as such a blow all at once.  Of course miracles happen and who knows what will happen.  We teach our children that a family is super important and even if you are not able to have children of your own, adoption is just as special and that those children would be no different than if they were born to you, and if that isn't an option...being a good person and helping others with their children is very important too.

I'm certain much of that didn't stick but it was a good discussion anyway and I know those two girls will do great things with their lives regardless of the struggles that await.

As for Alice's current status...she isn't on any medication other than growth hormone, the injection daily...Alice did however, take a long break (2-3 months) from growth hormone.  The original brand we think was making her nauseas. We recently started a new brand, and so far she hasn't experienced any nausea. Phew!! She complains of growing pains on occasion.  This isn't all bad. :)

I often tell my children to stop growing up, so sometime ago Alice said, "Mom, I have a good idea, if you want me to stop growing up, than don't do my shot anymore."

Alice sometimes has an extended tummy...her liver enzymes have improved dramatically.  I take comfort in that and also knowing that her recent liver ultra sound and other liver labs were normal.  I think this is more the fact that she LOVES LOVES food, and doesn't know when to stop eating.  She really appreciates food, after months and months, even a year of not eating or only eating broth, she has developed a keen relationship with food.

It's hard to believe where we have been and where we are.  We are in awe over and over at the miracles that have graced our lives, and truthfully many of those miracles came by way of those around us....and I know I say this often but it's true.

Much Love,
Lisy



Random Pictures
Summer pastime...hanging upside down
Isaiah is naturally a happy boy...so sweet.

Isaiah loved to sit on his knees, and thought he was pretty cool
with a orange ball in his mouth.

Her favorite thing to do...snoop around the pantry, hoping
something yummy will appear.

Of course the honey.


Made it to the Zoo this summer.
Evie, Alice, Natalie and Lydia
We spent most of our day watching the elephants.

Homemade earrings by Alice.


Getting big.
First Haircut


Summer corn.



Improvising for his height.

Matthew's tackle football team.  Good experience for Matthew,
he made some great friends and had a lot of fun.

Grandma and Grandpa stopping by to visit.

Fish boys fishing with the Fisher boys,
Noah, Tate, Blair and Matthew

Great catch Matthew.

He was so proud to wear his jersey to Parent Teacher night.




Lagoon
Make A Wish provided us with some tickets to Lagoon :), the kids had never been.  They had a wonderful time.  Alice talked big, but when it came to riding rides, she chickened out.  Finally Tyler made her ride a little kiddy roller coaster she cried through the whole thing...later she told us it was her favorite ride....hmmmm.
It took some coaxing to get Matthew on the big rides, but he ended up loving it.  Natalie and Blair are dare devils and didn't think twice about any of the rides.  As for Evelyn she wasn't afraid of anything.

Anxious to arrive at Lagoon.






The top of the ferris wheel.


He got in there by himself...becoming more independent everyday.