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, July 17, 2014

Holding Steady

This past week clinic turned out to be more good news. The doctors have given Alice a green light to come off one more medication. Such a relief to us that she continues to improve. Not to mention having to deal with one less medication makes every bit of difference in the morning and before bed time. In addition, the conversation turned to discussion on when Alice can have her central line removed.  A major factor in this decision is her proving that she can maintain good blood levels.  Yet, this is very exciting to me. I mean, its been over two years now that she has had a hole in her chest, and more years with a PICC line in her arm. I doubt she can remember life without having to consider getting in the bathtub or jumping on the trampoline without caution because of it. Hopefully by the end of summer it will become a reality. When that happens, its hard for me to believe that this chapter in our lives may be coming to a close? Wow. I really can't imagine it now. I'll believe it when I see it. Nevertheless, its good news and we will ride that wave until we can catch another.

Counts:
ANC 1500
Platelets 167
Hemoglobin 9.5


Below is a clip of Alice performing her first magic trick of the disappearing sucker. Still needs a little work, but its cute just the same.

Tyler





Sunday, July 6, 2014

Would You Rather?



This past week Lisy and I laughed at a few things the kids have said to us. Mostly because of the game "Would You Rather". The kids have used this game as a platform for their own "would you rathers". Not all, but some of them have had enough weight to give me pause or laugh. One in particular from Blair directed towards Lisy caused me to stop what I was doing and wait for her answer. It was a funny moment to say the least. Moreover, I thought it would have some comedic value if we posted some of the children's "would you rathers," and if you should want,  you are more than welcome to answer them in the comment section.

Tyler







Saturday, June 28, 2014

We're Still Here

It has been 18 days since our last post...time to catch up!

Thankfully, we are happy to report that from a health standpoint things have been fairly calm around here. Natalie, Matthew and Blair spent a week at Camp Hobe'....nothing but good came from their time at the camp.  We were so nervous to send them and worried it would be too long, or that someone would get sick or homesick.  This was an amazing experience for Natalie to be immersed socially, and to meet other children with similar challenges.  She even met a few other kids with Celiac.  Matthew and Blair equally had a blast.  We look forward to attending again next year.

Alice has been to Clinic three times and the Orthopedic since we posted last.  Quick summary; Her leg is great, she no longer needs the walking boot...still caution is required when outside, etc.

Clinic visits have been simple, her counts are recovering from the blood type switch over (if that is what her trouble was).  She has slowly pulled her hemoglobin up on her own.  As you can see below, all her counts have improved...ANC still strong.

Counts on June 27th:                      Counts on June 11th:
ANC 3000                                     ANC 2900
Platelets 180                                   Platelets 158
Hemoglobin 10.7                            Hemoglobin 9.5
Retic 2.6                                         Retic 4.69 (Normal Range .5-1.5)

Lisy




Camp HOBE' 2014
Last Day, final gathering.

Matthew with his counselors

Alice went along for the ride.

Natalie's group

Nurse Heather

Natalie and counselors


New Friends.

Located in Tooele

Love this picture...The medicine pick-up station.  Only at Camp Hobe can you drop off your children and know that they are getting their medicine and being well cared for by doctors and nurses.  When we dropped off Natalie's list of medicines, it was so simple because the nurses deal with this stuff daily and knew just what to do.



Tuesday, June 10, 2014

Kitty Kat Bar, Happy Birthday Matthew and Camp Hobe'

Since my last post, Alice has been to clinic twice and the orthopedic once.

We were happy to learn at her orthopedic visit that she no longer needs a hard cast, she received a walking boot.   She enjoys bath time more now, as we can remove the boot; also sleeping is easier without the boot.  I guess the downside to the walking boot is making sure it stays on her.  Likely she will not require the walking boot by her next appointment in a weeks time.

We are a little discouraged to report that Alice's hemoglobin was down this past week in clinic.  Not low enough to transfuse her but likely going in that direction.  She was checked in clinic on Monday June 2nd, and by Monday June 9th we decided to have her hemoglobin checked again, just because we thought she had dropped a good amount over the weekend.  She was seemingly more weak and complaining of headaches.  So, it had dropped a little but not too much.  When we return in two days for another clinic visit we will see what her level is again.  Possibly she needs more hydration, as her IV fluids are stopped.  We try to get her to drink plenty but in reality it isn't sufficient to the IV fluids she was receiving.  We are going to bump it up with some Pedialyte.   Dehydration can cause similar symptoms to anemia.  However, in the past couple/few weeks Alice has been nauseous again, vomiting between 1-2 times a day.  Her stool is loosening and becoming more frequent.  June 4th we ran several stool labs including a whole panel of parasites, etc.  Everything came back negative including Cdiff (clostridium defficile), norovirus and rotavirus.  Is any form of dehydration causing all these symptoms, is it diet related, or could it be the beginnings of GVHD?  At the moment we feel her gut is still healing and with some more hydration and a gentle diet these little bumps in the road should smooth out.

recent counts:
ANC 3000
Hemoglobin 9.4
Platelets 184




Woah, who's idea was this?  BB gun trouble!  Happy 9th Birthday Matthew.  It's been a long time in waiting...are kids ever old enough for such things?

Just checking out Natalie's new shades.

Dropping off the older kids at Camp Hobe for the week.  Alice will be ready when she is older.  Camp Hobe is offered to kids like Natalie and their siblings.  It's a place where these kids and be like normal kids.  Swim, play, and have fun with others who understand what it is like to be sick in the hospital and relate to one another.  Also siblings are invited as they are as much a part of the journey of such lifestyles.  I was totally fine when I dropped them off, but once I came home and walked inside my house I immediately got so homesick for Natalie, Matthew and Blair.  I started crying and wondering 'what in the world did we just do'.  Tyler was missing them too.  We sat around accomplishing nothing, once we started cleaning the house we started to feel better.   Natalie was so excited and nervous to go.  We hope this will provide a great social outlet for her, having her brothers there will help tremendously.  The camp staff is amazing.  They are volunteers, many nurses (some we know from ICS), doctors, counselors, and more.  They will be in good hands.   

Have fun Blair.

"Mom, you can go now...I'm ready"

The group at Camp Hobe.

More Clinic.


Just for fun and for memories:
Every day since Alice had some bites of a Kit Kat bar last week, she has been asking for a "Kitty Kat Bar", she loved it.  It's all she can think about.  For a very long time before and after her diet returned, after several months of not eating, she wanted nothing to do with sweets.  Things have changed.  She loves chocolate, ice cream and all the things 'good' to the mouth.  She loves Honey Nut Cheerios, Marshmallow Mateys, Frosted Mini Wheats, a good fresh crispy apple, and 'Awesome Chicken' (chicken cooked in a little apricot jelly).  We try not to buy the cereal too often, usually breakfast is an egg, but she will go for the cereal anytime during the day when it is available, of course with almond milk.  Maybe this diet doesn't sound so gentle? Hmmm...

Evie and Matthew's favorite thing to eat is raw oats with milk and honey.  Blair doesn't always express his favorites, he's happy with whatever.  Sometimes he likes to just stroll into the kitchen and eat whatever was left behind from another.

Natalie is in love with all the varieties of Chex cereal, except the plain corn flavor.  Apple Cinnamon is the most desired.  Natalie will do a frozen blueberry shake with all my secret healthy ingredients above all other foods.

Lisy

Thursday, May 29, 2014

Baby



BABY!!

We have waited to post our news that we are expecting another baby for a couple reasons;  One, it has taken us a bit of time to get through the shock factor.  Two, we wanted to wait until we passed the first trimester and knew the baby's gender.  So here it is:  We are having a little BOY--due August 18th.

Many of our friends and family have had asked about the probability of this baby having SCID, etc.

Of course we are nervous, but even more so we are thankful and excited.  Gender does not matter, regardless it is a 75% chance the baby will not have SCID.  It is also a 25% chance the baby could be a possible match for Alice if ever the need arises.  Of course it would only matter if the baby is healthy as far as being able to donate.  We plan to save the cord blood no matter what.

We met with a Maternal Fetal Medicine specialist and discussed all our options with testing the baby before birth.  This can be done through the amniotic fluid, but should be done before 23 weeks or after 37 weeks because of the risk of triggering labor.  We chose to wait until the baby was considered full term at 37 weeks and even more likely will wait until after he is born, which is of course the safest route.  If we do not know the baby's health status at the time of delivery, we will deliver at the University of Utah and baby will go into isolation until preliminary results are available...approx. 2 days for results.

We hope and pray that this little one will be healthy, of course.

I was telling a friend the other day that I remember praying "before children days" that when I do have children--that they would just be smart kids....hmmm!  Why not healthy-didn't cross my mind.  Anyway it's silly sometimes how we view our futures before they unfold.

We appreciate all the love and support we have received in regards to this new step in our lives.  We know it is a big thing, and we are thankful that it feels right.

Lisy

**Alice has already named the Baby---he will be called "Kipper Snacks".  It has taken her a little while to accept the fact that Kipper Snacks will be his fun playful name...we haven't yet decided on a 'real' name.

Tuesday, May 27, 2014

The Tooth Fairy and a Tiny Buckle Fracture

Lost Tooth, May 17 (Saturday)
WOW!  This is one proud girl, she lost her first tooth.  She was so excited that she wanted to call everybody she knew to tell them of her lost tooth.  It won't be long before a second one comes out.  Alice carefully placed it under her pillow, and unfortunately the tooth fairy forgot about her tooth, but she managed to come later in the day while Alice was busy playing.




Clinic, May 19 (Monday)
Tyler had taken Alice to clinic today for the normal routine check, she received an infusion of Pentamidine (preventative antibiotic) which she receives monthly.  All went well and her counts are great.  She will not return for two weeks, we anticipate the next visit to shed more light on her hemolysis situation.  A few days after clinic the NP called and informed us that Alice no longer requires Amlodipine (blood pressure med).  The is another step closer to where we want to be.  So, currently she is only taking 6 oral medications and zero regular IV infusions.  It's hard to believe things have become more simple.  When I think of where she was a couple months ago it makes my stomach churn, and I find it hard to imagine the amount of work it was....phew, so glad we are past that!
Counts:
ANC 3200
Hemoglobin 12.4
Platelets 143


Buckle Fracture, May 20 (Tuesday)
Just a regular day jumping on the trampoline, nothing outrageous but somehow Alice landed funny on her leg after leaping over a small stream of water that was dripping from the trampoline mat.  When she came in she was crying as if something was wrong, but she quickly calmed down and took a nap.  We thought nothing of it. Once she woke from her nap she continued to complain of the pain.  She did not want to walk on her leg, we iced it and elevated it for the evening and decided that if it still hurts by morning we would take her in.  Tyler and I spent the night taking turns gently rubbing and icing her leg, pain killers didn't seem to help.  Finally by 6 a.m. she was spent and we took her to the American Fork E.R.  They took some x-rays and stated that she had a very small buckle fracture on her Tibia (left).

For the next three days she wore a temporary cast for support.  She watched plenty of movies with her leg iced and elevated.  We saw the Orthopedic doctor on Friday, they could hardly see anything on the x-ray.  Because of her fragile condition, the doctor decided to hard cast it, better safe than sorry.  Likely she will be transferred to a boot by our next visit and will only need to wear that for a short period of time.


Waiting in the E.R. for the x-ray results

A nice new wrap

Home with baby carrots and a movie


This is a picture of the computer screen...it's hard to see but there is very little evidence of a broken bone.  The supposed fracture is mid calf on her left Tibia.

Just above the knee
I wanted to take a picture of this, it's very interesting.  The lines on Alice's bones, near the joints or growth plates look like tree rings, this is called facial growth arrest.  As explained to me by the Orthopedic doctor, when the body experiences great trauma it stops growing and uses all it's energy to survive.  Each line or ring indicates a time when Alice's body was experiencing great difficulty and wasn't growing.  Sadly, it is also considered lost growth, the bones will not make up for that lost growth.  She is very short for her age, and this is partly why.  Another side effect of chronic illness/transplant.

Her ankle.

Off with the temporary.

New pink hard cast with a walking shoe.


Talent Show, May 22 (Thursday)
Natalie begged to be in the school talent show.  We actually made the sign up deadline, the last day of course, but we made it.  I was totally impressed with myself that I actually made a deadline of any sort.  Natalie chose to do some of her favorite magic tricks for the talent show.  She practiced hard and did a fantastic job.  She didn't seem nervous at all.  We are realizing that she has a passion for acting.  Maybe it's time to enroll her in a play or something.  I won't post the video of the talent show because it's too shaky, Evie was all over my lap while I was trying to film.  Also Matthew's class did a dance, it was so cute and Matthew did great.
So Cute!

Little magician in training.



Keeping up with Matthew and Blair
Matthew has been working hard to become a better baseball player.  His coach has given him some great opportunities to pitch,  and Matthew is becoming more confident at the plate.  Tyler truly enjoys his time playing ball with Matthew, and Blair when he feels like joining them.

On deck ready to bat.

Blair asks me at least 15 times a day to play chess with him....in fact anyone who walks through the door is invited to play chess with Blair.  He loves it, and is becoming quite the player.  He has yet to beat me though.  It won't be long and he will be the president of the Chess club, we need to find a club first. :)

Blair and Tanner in a heated chess game.

Evie at the dentist.  Alice was concerned for her so she grabbed Evie's hand to provide her some comfort.


Memorial Day
Grandpa and Grandma Duncan (Lisy's Grandparents)

Bunkers came from Colorado, they have three little boys buried just across the lane from Grandma and Grandpa Duncan.  (Lisy's nephew's)
Sending boats down the creek by Grandmother's house.

Evie is determined to never look at the camera.  Those who know Evie know that she doesn't give in easily.

Blair, Landon, Kymball, Matthew

Injured Pals...Aunt JessIKA.

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Friday, May 16, 2014

Switching Blood Types?


I wondered after the last time that I posted, if I may be eating my words.  I mentioned that things were seemingly quiet around here and I was feeling lost and directionless.  It didn't take long, we decided to spice it up, and keep things crazy.  I've included plenty of pictures of our adventures and will give a more current update on Alice.

Tyler and I were overwhelmed and confused to learn of Alice's new warm antibody development and hemolysis which presented itself about two weeks ago.  Since we have discussed with her doctors what that really means...the latest is:  Alice's doctors feel it could be related to the fact that her body is trying to switch to her donor's blood type (A+).  This process typically happens a few months post transplant. The most challenging blood type to switch to is (A).  Alice is trying to switch from (O+) to (A+).  This is a difficult switch.  Apparently blood types (A) have more antigens and make the process tricky. Currently Alice is mixed blood, but mostly (A+).

According to the bone marrow team this is likely the explanation and the process can take anywhere from 3 months to 12 months to complete.  Does this require her to receive blood transfusions in the meantime...we don't know.  In few cases the process is very difficult and aggressive medications and intervention are required.

The good news is, this past week in clinic her counts were awesome.  In fact we were all surprised how good they were.  Aside from her good counts, she showed something promising with her ability to produce red cells.  When the body is hemolyzing red blood cells the marrow is required to work harder to keep up with the demand.  Two weeks ago her red blood cell production number was 7.25%.  This is high.  This week in clinic it had dropped to 2.13% and her hemoglobin was still good at 13.7.  A normal production rate is .5%-1.5%.  We were very happy about this.  Basically this means she wasn't hemolyzing as much, however, the blood transfusion she received of type O+ could be acting as a bandaid and making it all look good.  I won't go into more detail regarding this...it's complicated.  We just hope the explanation of her switching blood types is it, and that it goes smoothly.

May 12th Counts:
ANC 2500
Hemoglobin 13.7
Platelets 126

Some other big improvements have occurred with Alice.  More medications have been removed.  She requires Amlodopine (blood pressure med) only once a day now.  Her blood pressure was 92/55.  Her best yet!  Reglan (stomach stimulation med) was stopped.  And most excitedly she is completely off all nightly fluids.  It has been 8 months of consistant nightly nutrition/fluids, this is huge for us.  More sleep for Tyler and I, and Alice too.  Technically it has been 2 1/2 years of nightly fluids...since her first transplant...to be exact.  It's hard for us to remember when one transplant process ended and another started.

The next few months will indicate in more depth what Alice's body is truly experiencing, and we will keep an update.

Natalie's ear and cough was doing well, until last week her symptoms returned and we have put her back on antibiotics and some additional ear drops.  She has been stable from a seizure standpoint.  In a week's time she will start to feel good again.  Recently we informed Natalie that we have enrolled her into a summer school program.  She is not happy about it, but we know it is necessary.

Natalie has a strong competitive personality, she is highly motivated when she puts her mind to something.  We know that these attributes will benefit her greatly.  She will be a stronger and better person because of her struggles both physically and intellectually.  Much work ahead!!

Lisy



Alice's hair is long enough for a pony tail.

Evie wanted me to take a picture of her pony tail too.




On Saturday (May 3rd) Blair decided to test out how fast his bike could go.  From eye witness Matthew he apparently was speeding at least 30 mph and caught plenty of air over the curb.  The neighbors were doing some yard work and thankfully came to his aid.  He was bruised and scraped pretty good.  Needed 4 stitches in his eyebrow and seven in his arm.  We are so glad it wasn't worse. 

Natalie and Matthew wanted to come support Blair in the E.R.

A very nervous smile.

Blair tried really hard to talk the doctor into letting him have a butterfly bandaid. hmmm...
So sorry for the graphic photo.


All better and ready to go.  

May 4th
 I definitely need to explain what is going on in this picture.  Most importantly I strongly advise all those who wear contacts to carefully rinse hands after using household cleaner and before inserting contact lenses.  I thought I had rinsed my hands enough after using a Clorox wipe, but didn't.
I had my contact in for six hours before I finally pulled it out.  Some Clorox residue was trapped under my contact lens and gradually over a six hour period it burned away the outer layer of my eye.  I noticed my vision was blurring more each hour, however it wasn't particularly painful until finally I removed the contact and my eye immediately began to burn.  It was excruciating pain.  The nerves were now exposed with the contact lens removed.  We are grateful for an awesome Ophthalmologist.  After some antibiotic eye drops, eye cream/ointment, and a few days my eye improved.  The intense pain was only a couple days, thankfully...the rest is mostly healed. 
I'm not sure why I let myself post this picture....so beautiful!  I wasn't about to wear make-up on one eye.  It's worth posting, if it prevents someone from making the same ridiculous mistake.



Alice discovered Angle Food Cake!  She loves it.  She calls it a giant donut.  We had to monitor her Angle Food Cake intake, after she ate two pieces at a time.






 Natalie loves to put on puppet shows for Family Night.  She does a great job.  Alice and Evie are her best fans.


Silly Boys!

Matthew's second grade field trip to the pioneer museum...he was so happy that I agreed to go, he stayed up late packing his lunch and mine.  Later when we came home I asked him what was his favorite part of the field trip; he said, "It was being with you".  I know he loved having me there, even though he was too embarrassed to hold my hand in front of his friends. 

Meet Anna and Elsa!

Just waiting for dinner.
The kids found a snake after their piano recital, perhaps a perfect ending to a great performance.