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.

Thursday, September 25, 2014

A PIANO

Okay, so many months ago Natalie asked if she could have a piano.  I told her maybe someday.  A little while later I was in a copy shop and saw a flyer to win a Hailun Piano, so I thought, what the heck, let's try it.  Well then I forgot about it, but the flyer continued to show up around the house...usually in Natalie's hands asking if she could participate in the contest.  So, FINALLY I took her into the piano store (Brigham Larson Pianos) to join the contest.  

They ask about your story as to why you play the piano, and why you love to play.  Natalie's reason is very unique.
 The story/video with the most Youtube views wins the piano.  Considering that we just joined the contest in late September, our chances are small.  The contest has been going since April and will run through the end of the year. Regardless it is a good experience for Natalie.                    

Share the video if you can, and help Natalie get more views. Thanks!
(There is no limit to how many times one can view the video)

Natalie was nervous to talk in front of the camera, therefore, she wanted to read something rather just tell her story. I helped her write her story, but it looks like I have set her up to this...ugg, anyway she really wants a to do this,,,so here goes!

Hearing Aids for Natalie

Today Natalie and I went to the Riverton hospital to have her fitted for hearing aids.  It's a process, and might take some time before she actually gets them.  She seemed excited about it, and I was happy to see her happy.  She is planning to get a colorful hearing aid, and is proud of it.

Natalie has grown and matured so much in the past several months....AND she loves to go to school and enjoys her classmates.  I think we might have found the right place for her in school.  The fact that she is happy to be there is worth a million dollars.  She truly is happier.  She is with a group of children who have disabilities.  All sorts of different disabilities.  Natalie likes to help them and enjoys entertaining them.  She appreciates their differences and understands them.  It is so sweet the way she talks about her friends...she really cares for them.  

I was unsure of the program at first, as Natalie is more advanced and needs more of an academic challenge; therefore, we met as a team (teachers, administrators, etc.) and have come up with a plan to create a balance. She will spend most of her day with the regular 4th grade general education class, which is good for her learning and social development.  Natalie has a new friend in her 4th grade class who has taken her under her wing.  I am so thankful for this sweet little girl.  She is assigned to be Natalie's peer tutor.  It's amazing to me how things seem to come together, and for Natalie she is in good hands.  


Lisy

This is just a sample hearing aid...fitting for size.

Wednesday, September 24, 2014

Clinic

Alice went to clinic today...her first time since her line was removed.  Thus, she had to have a needle poke.  She cried, but did well.  Also she had a flu shot.  Double poke!

She is doing great.  Labs are good.  She will continue the antiviral medication (Val-acyclovir) for another month.

Counts:
ANC 2400
Hemoglobin 11.5
Platelets 198

Alice's next appointment isn't until October 20th!  I have to admit, now that her clinic visits are not every week...on the same day each week, I am having a hard time remembering them.  In fact, we missed it earlier this week and had to reschedule.  Maybe we are adjusting to regular life more than we realize.  Actually it seems more appropriate to say it is my post baby brain.  I forget everything else too. :/

Lisy



Here are some updated pictures of our little man!
We can't get enough of him.  Six weeks old.




Friday, September 19, 2014

Looking back at "Life's Moments"

Looking Back

This video was made nearly two years ago by my sister-in-law, Tami.  She surprised us with such a treasure.  We love it and will cherish it forever.  The memories are irreplaceable.  



Sunday, September 14, 2014

Annual BMT, Broken Bone, and the ER


September 4th Natalie had her annual Bone Marrow Clinic visit and hearing test.  Her hearing test showed a slightly different result than what we expected.  Slightly worse.  We will have her fitted for a hearing aid in one ear and see if this helps her sufficiently.

Natalie's overall counts look great.  She is doing very well, and remains at 100% donor cells.  Her titers to the immunizations have responded as hoped.   Her IG levels are good.  One IG level which ins't most important was low, but nothing to fuss over.  We will keep an eye on this level and have it checked again next year.  However, in a few months she will need a CBC checked for follow up purposes, in which surprisingly I can't even remember why.  Lately I have had a struggle remembering everything, detail by detail.  It's a good thing the girls' health is looking up, I'm slacking off with the details...I suppose having a newborn contributes to this matter.

September 6th Alice broke another bone.  Ahh!  Some months ago we teased that Alice has only one limb left in which she has not broken, her right arm.  Well it just so happens that her right arm is the one in which she broke.  The kids were playing in the family room having a great time, laughing and running around.  Matthew threw a stuffed animal at Alice while she was running...she tripped over it and landed with her hands on the floor (carpeted floor), upon impact her right arm buckled just above her wrist.  We put an ice pack on her arm and gave her some Tylenol.  She didn't seem to complain much.  The next day it was swollen, she still didn't seem too bothered by the pain.  We decided to have an x-ray regardless, because of her history, and sure enough it was broke.  She takes vitamin D and calcium regularly...it's just a slow process to recovery from a double transplant.

X-ray of Alice's right arm...just above her wrist you can see the buckle fracture, indention.
Also you can see the growth rings of missed growth :(
Hanging out in the American Fork E.R. with Dad.

She was treated right at the E.R.

September 7th on Sunday at our church Tyler blessed Isaiah.  It was a sweet blessing and a great day to celebrate him and to be with family.  We love Isaiah and can't get enough of him.  I still can't believe he is here and a part of our family.  I often find myself staring at him in wonder that I have him.  At his recent doctor appointment he weighed 8 lbs. 6 oz.  A pound and a half bigger than at birth.  Happy he is growing!

Tyler's sister Jessica took his newborn pictures...love them, this was my favorite.

Isaiah's baby blessing...just outside the church.
What a handsome boy in his blessing outfit.

I think this counts for a smile.
After Isaiah's blessing I saw the sun coming in the window and I told Matthew to grab the camera...he was a great photographer, I always wanted a picture of me smiling at my baby...I know, so cheesy!
Isaiah and his cousin Parks, we are missing him!  Only one week apart.  Parks had to go home, to Hawaii.

September 8th Natalie woke at 2:30 a.m. with a raging fever of 104 degrees and couldn't breath well with out pain.  She was acting funny and gave us great concern.  It is always scary when she has a temperature so high...her seizure threshold is lowered when ill.  Tyler and I decided it wasn't worth waiting until morning to have her seen.  Her lungs are so fragile, as well as her neurological status, it's best to be overly cautious.  I took her to the American Fork E.R.  The x-ray indicated possible beginnings of pneumonia, but nothing certain.  We had the regular labs drawn and a nasal swab done to check for the new virus that has been on the news (Enterovirus D68).  The nurse placed an IV to get cultures and to administer a dose of rocephin.  Natalie did quite well and was very brave.  We went home after 4 hours and she slept until noon.  We also started her on Azithromycin; since she has not had fevers, and her cough and nose have cleared up (mostly).  I think we caught a pneumonia in it's track.

Waiting in the E.R. for x-ray and lab results...her fever just broke.

Brave Natalie once again.
September 12th Alice visited the orthopedic doctor today and received a hard cast.  Tyler asked if they had contacted the social worker yet...they laughed at the irony.  This better be the last broken bone for Alice.  I am tempted to wrap her in bubble wrap until her bones are stronger.





More funny things the kids say:

Evie said to Tyler, "Dad, what are those dots on your arm?"  Tyler said, "Evie they are Freckles." Evie said, "Why do you have so many freckles?"  Tyler said, "You will have some freckles too...soon!" Evie then examined her arms.

Natalie came to me the other day seemingly discouraged about something.  I asked her what was wrong and she said, "I don't think Heavenly Father is answering my prayers." I wasn't sure what to say but questioned her as to why she felt this way.  She replied, "Well I pray every night that you will have a good night and be able to sleep, but it hasn't worked."  I was surprised by her response and touched at the same time.  I thanked her for thinking of me and told her that some nights are truly better than others.  I then realized that I must be complaining to my children about not getting enough sleep, or it's obvious when I'm dead to the world at 8:00 a.m.  Either way Natalie has been sweet to think of me.

We were all gathered around the table doing homework, when Blair announced that he was having a hard time focusing.  He suggested that he put his pet snake in the center of the table so we could all focus better.  So, we did homework with the snake.  It seemed to help Blair, but I can't say I was too excited about it.  Blair has been so persistent in having a pet.  My brother Josh caught the 3 foot long snake for Blair.  It was originally going to be a tarantula, but they were released so Josh delivered a snake instead.  Either way I wasn't so sure about it.  If I ever find the cage empty...I will move to a hotel until the snake is recovered...no joke.

I will post again soon, I have a fun video to share...it's from two years ago--fun to look back at where we have been and where we are now.

Lisy

Matthew read bedtime stories for me, Thanks Matthew!








Wednesday, September 10, 2014

Tuesday, September 2, 2014

Good Bye Broviac

Today Alice lost a huge part of her.  A part that had a bitter sweet attachment to her.  She had her Broviac line removed after nearly three years of use; it was time to say good bye to her practically permanent appendage.

On our way to the hospital, Alice said to me, "Mom, guess who else is a part of the family?"  I said, "I have no idea Alice..who?"  She said with a sentimental tone in her voice, "My line is."  It made me smile to think that she has found a way to allow her line to become a positive thing in her life.  Interestingly enough dressing changes over the past several months have become a breeze and in fact she reminded us of when it needed changing.

Alice has figured out that our remaining clinic visits will include needle pokes with her line gone, therefore she was a little reluctant to let it go.

The longer a line has been in place the more difficult it is to remove because of the scar tissue that builds around the inside cuff.  Alice's wasn't as difficult to remove as they anticipated.  Alice asked the surgeon if she could keep her Broviac line, instead we took pictures.

Tyler and I are going to feel strange each night, as if we are forgetting something, with her line gone; it has been over four years that we have had to maintain a central line of some sorts.  We are very thankful that her Broviac has endured so well...this is a blessing, it's not usually to have one last so long.

Anyway this is a major step, one that is worth recognizing.  It truly marks the beginning of a new phase for us.  We hope the goodness continues, especially as we approach the winter months.  Regardless we have come a very long way and will push forward continually.

Lisy



Waiting to be called back to surgery.


One last picture.

The complete Broviac Line
The red part is the cuff that was just under her skin, the black line below the red cuff was the stitch on the outside of her skin, it was to hold her line in place on the outside, it came loose long ago.
I hope this isn't gross to look at.  Nothing seems to phase us anymore.


I saw this at Wal-Mart recently...happy to see they raised so much money.
How ironic, in this picture you can see her freshly placed Broviac Line.
Alice's very last dressing change!!!



Thursday, August 28, 2014

Official Results and Clinic/Labs


Results
This past Monday August 25th, while in clinic with Natalie and Alice we received the official results for little Isaiah.  Apparently the bone marrow office received the gene testing results at the same moment we arrived to clinic. 
Isaiah does not have SCID!!!  
 I wish I could describe the feeling of relief that Tyler and I are experiencing...we have each been packing around an extra 20 pounds of weight in anticipation and worry for the past 9 months, and now to finally let it go; so thankful we are...so thankful!  
Here's how it went:  
Doctor Boyer walked into the room and handed Tyler a piece of paper from the gene lab, like no big deal. Tyler began reading it while the doctor began to talk.  At first Tyler understood the results as positive for SCID.  I noticed that Tyler's demeanor suddenly changed, he had stress, confusion and worry written all over his face.  I was unaware of Tyler's confusion, but once he tuned into the conversation...about Isaiah NOT having SCID, Tyler instantly gasped for a breath of relief and perked up. 
This past week Isaiah had thrush...poor guy.  I will admit that when he got thrush I got nervous that maybe his immune system wasn't proper.  Thus the whole snow ball effect of emotions got away with me again, and I started to worry that he might have SCID.  Natalie had thrush as a newborn, however, her thrush took several weeks to clear up....thus an improper immune system.  Isaiah's thrush cleared up with Nystatin within 1-2 days.  It was so awesome!

In clinic this week Alice's labs were again wonderful.
ANC 3100
Platelets 194
Hemoglobin 11.4
Alice is still 100% donor!
Alice will continue to visit the bone marrow clinic monthly.
Which means....Yes it's that time.  Alice will have her central line removed September 2nd!  We are so excited for her to experience life without a line.  She is looking forward to being "free".  This particular line has lasted far longer than expected, two and a half years, we are thankful for it's durability.  She has had several PICC lines along the way too, but for Alice she has had a line attached to her for almost 4 of her 5 years of life.  Big step ahead for Alice. :)  On her next visit this means she will have to be poked by a needle for labs...that's the down side, but she can't wait to go swimming!

Labs for Natalie
Lucky Natalie she got to come along with Alice to clinic.  Not really.  She had to have lots of blood drawn for many many labs.  Natalie's yearly bone marrow check-up is next week.  It's hard to believe Natalie only needs to be seen yearly now.  Among the many labs drawn, some were for studies, others for bone marrow purposes, some for immunization titers, and lastly I requested an allergy panel, in hopes we might be able to pinpoint her hives.  By next week all results will be discussed.
I need to mention that Natalie did fantastic with the needle poke, neither Tyler or I knew it was happening, she just let the phlebotomist do it without a fuss (it helped that our favorite phlebotomist Elena did it).  I looked over and she was already drawing blood.  So proud of you Natalie!

A few funny things from the kids.
The night before we had our dear friends coming to visit we sat the kids down and told them to behave nicely and use their manners.  Natalie's reply was worth recording...she said, "So you want us to be something different?"
Alice and Evie were in the bathtub playing for a long while together...about 45 minutes.  They washed their 'My Little Pony' ponies hair a hundred times .  When they got out and dressed themselves I noticed that Evie's panties were on backwards.  I told her to switch them around.  She paused and looked at Alice then said, "I can't, because Alice will see my bum."  I guess the 45 minutes in the tub doesn't count.

Lisy

Clinic for Alice and Labs for Natalie.  Don't they look so good and healthy!!

Brave Natalie!

You are a Pro Natalie.

The new fountains at Primary Children's Hospital.

Alice was throwing her money in and Natalie was trying to retrieve it,

Never a need for baby holders.
It's been a long time since we had cardboard pizza (frozen pizza).
With Natalie at school all day, we decided to cook up the gluten containing pizza that has been in the freezer far too long.
Our dear friends Annie and Woody came from California to pick up their new puppy "Hudson" and to visit.   My Brother in Law breeds Labs; it just so happened to work out that Woody and Annie were looking for a Lab.
The kids had a great time playing with all the puppies.
Good-Bye to our dear friends Woody and Annie and now Hudson!
Evie, Mariah, Malia (Cousins)
These little girls wanted to paint gloves on their arms.  Too bad it wasn't Crayola washable paint...thank goodness it was on the grass.

Wednesday, August 20, 2014

Welcome Baby!! Back to School!!


Hello World!!

Isaiah Martin Fish
Born August 11, 2014
6 lbs. 15 oz.  20 inches



Monday morning (Aug 11th) I called the University of Utah to ask when they wanted me to come in...I was being induced right at 39 weeks.  We planned to be induced for two reasons, we knew the drive to the University hospital was an hour drive, and wanted to be sure to make it in time, and I don't normally make it to my due date anyway.  Our other babies came very quickly.  We nearly didn't make it to the local hospital with them.  In addition, we knew we needed plenty of time to organize the cord blood collection and all the genetic labs that Isaiah would need to have done right at birth.
It worked out that when we checked in and monitored my contractions I was already in active labor having consistent contractions...it was perfect timing for all we hoped to accomplish.  Baby came fast enough and everything was done properly.

I can't believe he is here...he is perfect!  I told Tyler that I feel like I can't set him down, because if I do--he will grow up too fast.  He is one week old and I'm already having a hard time with the fact that he might grow up.  Is this normal?  Honestly, I have not felt normal for 9 months...why should I worry about that now!
We could not have a more beautiful and perfect baby, he is smothered with love and kisses.  The moment he makes a squeak, five little people are to the rescue.  Some of his nicknames include:  Izzie, Z, Zaiah, ZZ, and every now and then Kipper.
As I mentioned in a earlier post the plan was to remain in the hospital for two weeks after the baby was born to ensure a germ free environment while SCID testing was pending.  Just minutes after he was born and the cord blood was collected, the NICU nurses came and took nearly 10-12 ml of blood from him for the many tests being sent.  I was told it took seven pokes to get that much blood.  Poor little man.  The labs were sent immediately.

Two days later (Wednesday) I was being discharged, and asked the doctors if I could take the baby home with me--rather stay two more weeks.  Both Tyler and I felt good about taking the baby home.  I was unofficially given the green light...then two hours before I was leaving they told me to plan to head across the sky bridge to Primary Children's where Isaiah would spend the next two weeks.  At that moment I got nervous that some labs had already come back abnormal.  Tyler and I began to anticipate the bad news.  Within the next hour a doctor with the University came to inform us that the preliminary Immunodeficiency panel had just been posted.  According to our immunologist all values looked good, and indicated nothing regarding SCID.  This was a huge relief, yet we know until the genetic results are back nothing is set in stone.  However, with this bit of information we were again given the green light to take baby home.  Yeah!!  Isaiah's skin is perfect, no signs of SCID rashes...unlike Alice who developed a terrible rash day two of life.

The past week at home with Isaiah has been good.

Today (Aug. 19th) the immunologist Dr. Chen called, we had a great lengthy conversation.  She informed me that his newborn screening panel had returned completely normal.  This is great news!  Because of the type of SCID that we carry (Leaky SCID) it isn't 100% certain that the newborn screening will catch Leaky SCID, so again we still anticipate the genetic results.  It is reassuring that so far their have been no indications of something abnormal.  Even Dr. Chen feels like if Isaiah has SCID we would have seen at least something odd or abnormal with all the labs that have been posted at this point.

Excitement...anticipating the arrival of baby.

This is for Natalie...Mom gets IV's too.

Delivery room and baby's bed that awaits.

Exhausted!
So he fell asleep just after we checked in...you would think we had spent all night laboring.  Just a cat nap I suppose, getting ready for the big moment.

About 20 minutes before baby arrived.

First moment with Mom.
Big Boy!

Blood Draws.

Just taking pictures of ourselves.


Freshly washed hair.

The kids were SO EXCITED to meet Isaiah.


One happy Natalie.

Grandmother and Grandpa Fish

Blair...a good big brother.

One last picture before going home.

Ready to go.

Just wanted to remember our room and the sky bridge to the Primary Children's hospital...so thankful we could go home.

Tyler was in a hurry to get out of there...he didn't waste any time.


First time in the car.




He is not a fan of diaper changes.

First real bath.




Something about Mom and Dad's bed that makes naptime that much better, it's that time of day...afternoon.  Three sleeping little ones.



Any chance she gets to steal the baby's bottle...she will.
  Isaiah is good to take one little bottle a day, and it gives me a chance to let my supply catch up.

Alice's new favorite thing to eat...cream of wheat.




Family Night...the night before school starts.  Tyler was giving the lesson, and helping the kids to understand what to expect and how to behave, etc. etc.  You can see that they are very interested in what he was saying.  I was just impressed to get a picture of them all on the couch at the same time, which was a brief moment.

First day of School...2014!
Fourth Grade, Third Grade, Second Grade.




Natalie is testing out a specific program offered by the district and therefore takes the bus to a different school.  We decided to give it a couple weeks, if she does well--great.  If it's not the right fit for her then we put her back in the same school with the boys, and will get her in the right setting.
Update on Alice. 
Next week we will visit clinic and check her counts, likely schedule a date to remove her central line...if all labs look good.  She is doing awesome.  She had a little nausea a couple weeks ago, but we think it was from something she ate.  Dairy is still hard on Alice's tummy, but most other things are okay.  We hope and pray for a healthier winter this year than last year.
Lisy