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.
Can you believe the time...where does it go? This post is a very condensed summary of last six months. Listed from oldest to newest.
Tyler made a really cute video of this year's ice rink...It's at the very end of this post. Check it out!
October 19th 2015-- BMT clinic for Alice
Alice holding Isaiah while waiting for the lab to call us back...doesn't she look so brave.
The whole gang came along.
Checking Vitals
Loving her time in clinic.
A big day once again. Alice was advanced to long term clinic. The Team of doctors and nurses that have followed Alice feel she is ready for long term clinic...meaning she only comes once a year for follow-up. Last time we reached this point she gave us a curve ball--however, we feel more prepared this time. Although with that said, when we arrived home from BMT clinic, she began running a fever in the evening and felt ill. Such irony. Seriously??? I wonder if Alice just loves the hospital so much that she can't let it go. ;)
More than likely we expose ourselves to new bugs every time we go to the hospital. However, this time the turn over was too fast. I doubt such things could present so quickly. Actually Isaiah hasn't been feeling well, including fever and runny nose. It's going around. So, Alice get feeling better soon!!.....and she did! YEAH!!!!
Lab results from clinic.
Everything looks fantastic. Her white cells, red cells and platelets are all normal, including liver function. I am always keeping a keen eye on her liver function labs. I was thankful and relieved her liver tests were good. We still await her iron levels.
Alice's chimerism continues to improve. Currently her whole blood is 100% (97% donor #2 and 3% donor #1), T cell chimerism is 93% donor #2 and 7% donor #1, B cell chimerism is 100% donor #2.
The closer her chimerism becomes all donor #2 the better. These numbers are very good and we are continuing to see them going in the right direction. Yeah!
Oct 23rd 2015--Ophthalmology Clinic
Just a simple quick follow up today to check on Alice's eyes. As I have mentioned in a previous post, she has some cataracts in her eye. It affects her vision very little so removing the cataracts isn't necessary at this time. There are risks and side effects with removing cataracts. So we will just watch it for now, if ever it interferes with her vision then we will consider the options. She requires follow-ups every 4-6 months at this point.
How did Alice develop cataracts? We believe it was caused either from the many systemic steroids she was taking or the varicella virus (chicken pox) that had gotten into her eye.
October 2015
Does Natalie have Cholesteatoma? We found a white mass like in Natalie's ear(s). It looked very concerning and of course everything we could find online indicated very similarly as cholesteatoma. Within a week or two we were able to have the ENT examine her ears. It is in fact a white mass in her middle ear, thankfully not cholesteatoma, but instead it is Myringosclerosis. Myringosclerosis is "healthy tissue degeneration and calcium deposits which form on the tympanic membrane (eardrum).In addition to the formation of calcium deposits, the ear drum, which is normally thin and translucent, may thicken, harden, and lose it's transparency and mobility. This is thought to be caused by chronic inflammation in the middle ear which stimulates the production of extra tissue cells."-about health
It is no surprise Natalie has developed this, considering the amount of inflammation, fluid and infection that have plagued her ears over the years. If it gets so bad that her hearing becomes severely impaired, they can surgically remove the calcium deposit, but with risks of damaging her inner ear. We will continue to keep an eye on this.
Fall/Halloween October 31st 2015
A fun holiday for sure...Tyler's dream has been to host a Harry Potter Halloween party. So we did. It was fun to have family over for good eats and homemade butterbeer. The little ones practiced their spells on our magic hanging candles...we played guess the Bertie Botts Jelly Bean flavor, pretty gross. Good times it was...and there were some great costumes...and I don't have any pictures of this fantastic party. :/ opps!
I took the three little ones to a little corn maze and pumpkin patch. Isaiah was memorized by this pig.
Building up the courage to get closer.
And he did it...he touched the pig...it wasn't going anywhere quick, perfect for a little guy like Isaiah.
He was trying to say 'no more pictures mom', I was driving him crazy with my camera.
little harvest ride
racing through the corn stalks
Overlooking the corn maze.
Corn pool
I managed to get him to look in my direction...I consider it a successful picture.
Matthew made this for his school project
The kids came up with their own costume ideas--hats off to Blair. It was a fun time turing him into an old man. He definitely got the most smiles and laughs at the school parade. Matthew was a purple morph again for third year in a row, didn't managed to get a picture of his costume, but I have some from the past years :)
Old man Blair
School Halloween parade, he definitely got the most laughs.
This is not a wig.
Alice as Disgust from Inside Out
Natalie is a Raccoon
Natalie's favorite Halloween treat, Black Cat cookies...this year I made them Gluten Free.
I made six apple pies, and had plenty of help. I actually left out some dough for them to roll out and let them think they were helping make the pies. I love the "help" but it sure makes for a big clean up job.
Oh I wish I could stop time and keep my kids this age forever.
Halloween night...they were on their own for costumes, so it ended up being what was warm and easy.
Little Red Riding Hood
Another year as a Carebear
Natalie had one goal in mind...CANDY, and A LOT of it!!
Alice wanted fake nails, so this is how she managed them.
And apparently the only tape she could find was electrical tape.
Natalie's 12th Birthday, 2015
Natalie is 12? What? Who would have known all the things she would experience before her 12th birthday. Time to celebrate twelve strong years Natalie. She choose to invite some friends to go to dinner and the skate rink. It was a blast.
Natalie's favorite food...Chinese
Roller Skating
Bethany, Shelby, Lizzie, Natalie, Haley, and Lydia
Also Natalie is old enough to be in Young Womens (an organization within the church). She is so happy to be a part of the youth activities and girls camp this coming summer. Also Natalie is old enough to participate in baptisms for the dead in the temple. She was nervous and excited for this. Tyler and I took her to the Timpanogos Temple for her first time, her cousin Kymball came along. It was a wonderful experience...Natalie asked when it was over if we could go again. Of course!
Kymball, Tyler and Natalie
Mount Timpanogos Temple
Lisy and Natalie
Thanksgiving 2015
First Thanksgiving in a long time that we could be all together. Holidays for us over the past 4-5 years have been either in the hospital or some of us stay home with sickness, while the others celebrate. Being together is definitely the best option.
Natalie won our Thanksgiving turkey this year...she took first place in the school's turkey trot, she was up against some stiff competition in the life skills class. ;) It was cute, and she was so proud of herself.
Christmas 2015
This is how we decorate for the holidays, at least for Alice. Her side of the room.
And this is Evie's side of the room, each with their own touch.
Who would have thought--gift tags, should I pin it? ;)
Rudolph lives at our house.
The nativity at Grandmother and Grandpa Fishes house.
Merry Christmas morning.
Random Pictures Just for fun
First snowman of the season
That snowman makes Isaiah look so big
The real Frosty the Snowman
Evie
and Evie.
Cousin's Hut
Alice and Evie at dance class
Since Alice was very little she dreamed of being a ballerina, when she was super sick in the hospital, she would ask us if she could be a ballerina someday. Many times we worried she would never have the chance to try--here we are, she is well and now she is living her dream.
Evie is also in dance class, they are in the same class..it is so cute. Evie insists that the tights are supposed to go over the leotard.
Christmas break this year (2015) was awesome. Tyler managed to stay out of the ER, unlike the year before, so instead he built an ice rink and we took full advantage of the extreme cold spell over the two week break. We spent most of our time out doors bundled up, this video has all the fun details.
In fact we were able to enjoy the rink for several weeks....winter (2015-2016) could not have been more perfect for a backyard rink.
Tyler is so good when it comes to building lasting memories...he is always thinking ahead, imagining what the kids will remember when they are older and how it will shape their adulthood....he wants them to have the same wholesome childhood we had just one generation ago....in this ever changing world.
