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.

Monday, September 21, 2015

Long Time

WOW, I can't believe a whole summer has come and gone and I never posted on this blog.  I actually lost a lot of information from my phone regarding doctors appointments and notes so I feel totally lost in what to post.  I will have to just summarize and post the things I can remember.  I will start working on a post that will cover our summer, etc. but for now I'd like to invite anyone who hasn't yet had the opportunity to become a member of the bone marrow registry, to become one now.

This coming Saturday my wonderful nephew Garrett Cutler is holding a Marrow Donor registry drive for his Eagle scout project.  If you have thought about joining at all...ever, if you've had that nudge, now is a good time to do something about it.  Even if you can't make it Saturday or do not live in the area, you can still join through Garrett's efforts via internet.  The following flyer has all the details.

I am looking forward to being there on Saturday to support Garrett and answer any questions people might have regarding the whole process....I hope to see some of you there.


p.s. Also if you have already joined the registry, Garrett is also holding a bake sale during the drive to raise extra money to donate to 'Be The Match'.  And I'm not going to lie but his Mamma is the best baker lady in town, so it will be well worth it.

p.p.s. The location of the marrow drive/bake sale is in LEHI--the address is on the flyer.

Okay here is a working link to Garrett's marrow donor registry drive.

Friday, June 12, 2015

The Difference Between Inspiration & Motivation

(To our blog followers. This is a short article I wrote to share on another site. I thought it be appropriate to post it.)

Understanding the difference between inspiration and motivation is key to success and failure in life as well as in business. Have you ever really thought about what inspires you and what motivates you?  Far too often in our “need it now” culture these two words have been blended together to our detriment. When we’re able to take a step back and cognize the meaning of both we come to understand that motivation is actually a bi-product of inspiration. For example, when you helped that person who was in need; you were most likely motivated to do so because you were inspired by seeing someone else do the same. It was that feeling of assisting someone in need that motivated you. Furthermore, it is by inspiration that businesses are built in garages and then become behemoths like Microsoft. Success in life and business is achieved when motivation hitches a ride on the wave of inspiration. What is wonderful about inspiration is that it is prejudice to no one, and can take on countless forms. Moreover, finding your perfect “wave”of inspiration can only be found by you.  For me, I have found that watching/listening to any combination of music, nature or selfless act will inspire me to be a better person. The result is being motivated to reach beyond my normal capacity.

So, today as you sit in morning traffic or perhaps take that 4am train/bus ride into work, instead of asking yourself; what motivates me to succeed? Ask yourself: what inspires me to succeed?  When you figure that out, then you will have the ability to ride the wave of inspiration to success in life, as well as in business.  Get out there and find what it is that inspires you.


The story in this short Youtube clip is something that inspires me. My daughter Natalie, and son Blair.

Sunday, May 31, 2015

Past Two Months

I have started several posts with great intentions to publish them...I seem to be interrupted plenty and think, I'll get to it later.  Many of the pictures and videos on this post are old but have been just waiting on the blogger server to be published.  Even if they might be from months ago I will still post them...after all I got as far as uploading them.  I think I need to make a goal to post something, anything once a week, so I can keep my records straight and so the task of posting won't be so overwhelming as I try to recall the last months events.

Just for the record, I really do love posting.  It's so good for me to take the time to's very therapeutic.  Journal writing serves many wonder we are encouraged to do it.

Okay, Our life is feeling more stable all the time.  We still see the doctors plenty and have illnesses, most in which we can manage without medical attention.  This spring has been tricky.  The weather can't decide what it wants to be, hot, cold, rainy, and it has confused everyone's immune systems. Everyone has been passing and sharing the next bug that is going around.

So to begin.  Life has been good to us, as we have been settling into to our new neighborhood.  The kids have wonderful friends.  Tyler is working hard at his new job--he is so dedicated to his work. He always has been.  It's bizarre to think another school year is ending....summer break is here.  Of course I have great expectations to do lots of catch up work, reading, and projects with the kids this summer. I have it all figured out in my mind...the hard part is implementing and following through with this plan.  Sound familiar?

The children are however, very excited to attend Camp Hobe' again this year.  Camp Hobe' is a cancer camp for patients and their siblings.  Last year the older three had such a wonderful time they can't wait to go again.  Alice will be able to attend this year finally, as her health is better.  She will go for just the day camp.

And I can't believe I will be registering Alice for Kindergarten!  I honestly can say that there were many moments when I wondered if she would be able to go to school, as well as many other things. We have been so blessed.

I've made a list of the past two month's events--this is the easiest way I could think of to catch up.

--Lost Hearing Aid.  Natalie has been congested again and experiencing fevers...I'm almost convinced that gluten can cause fevers with Natalie, she broke one night and ate croutons.  I made a really good gluten free meal for an evening with company, I had offered a separate bowl of homemade croutons for the salad.  Natalie helped her self with them...PLENTY TOO!  The week following she was ill.  I suppose it could have been coincidence with something else, however, I wonder if I am seeing a pattern here, as I look back over the years.  Sinus infections or Gluten? Likely sinus or something but unfortunate timing with gluten. Hmmm, I wish I knew the cause of her reoccurring fevers.  Anyway the fevers cause her seizure threshold to lower.  A few days post eating the gluten, I was driving home with Natalie in the car, knowing she had a fever I began to get concerned...and she began to seize, I felt like I couldn't drive fast enough to get home to her rescue which I normally have with me.  In the meantime she lost her hearing aid.  Has no memory of taking it out or what happened.  I have searched the car over many times, why is it that cars can hide things so well? Ha ha, including rotten milk bottles. She lost it already once on the plane to DisnelyWorld.  I literally took apart the airplane seat and found it, but no such luck this time.  Thankfully the insurance allowed us to get one replacement. Hopefully the new one will stick around.  I still check the car in hopes that the old hearing aid will show up.

Since Natalie received her hearing aid several months ago, we still have not been able to do a proper hearing test to ensure its correct settings, etc.  We have tired plenty of times, however, she has frequent fluid in her ear which isn't feasible for hearing aids.  We'll get it though.

--April 7th, ER for Alice.  The past couple weeks have been long.  Evie hasn't been well, poor thing. It isn't like her to be still and tired.  Possibly a rotavirus.  This bug is yucky, causing diarrhea, vomiting and stomach pain.  Shortly after Evie recovered, Alice came down with the same thing. However, Alice's reserve is still limited.  She became quickly and severely dehydrated.  We took her to the local Emergency Room where they treated her with plenty (double bag) of IV fluid.  She began to perk up. Labs were drawn and then we headed home shortly after midnight. I recall the doctor telling me that he hasn't seen a child so dehydrated.  She hadn't been sick long.  It goes to show that she is still fragile.  A symptom of dehydration is severe vomiting.  She was vomiting on the dot every 5 minutes. we would give her drinks and 5 minutes later it was back up.  That was a hard virus for Alice at this time.

--Blair's Birthday, April 13th.  He turned Eight!  It's great to be eight.  His birthday wish was to go to the Museum of Natural Curiosity at Thanksgiving Point.  He went once with his school class and hasn't stopped talking about it.  We decided to surprise him, so we blind folded him.  When we arrived Matthew was guiding him, the task was more than Matthew realized as he unintentionally ran Blair into the handicap sign...I still have some small doubts that maybe it wasn't unintentional.  After a few tears Blair was ready for the surprise.  We had a wonderful time and the perfect time to go, as nobody was there...rare for this museum.  Blair broke the record as the longest hanging Sloth.  He hung on the rope for approx. 10 minutes.
Had to get a picture of the handicap sign, just for memory sake.

--CT SCAN for Natalie.  The new CT scan at PCH is awesome.  It's 80% less radiation than the old machine.  Natalie was schedule to have a CT scan done in Riverton, however, I was more than willing to make the drive to the main Primary Children's, Salt Lake to avoid the extra exposure of radiation.  They decorated the new machine to look like a pirate ship.  It helps the kids to feel less anxious for the scan.  The scan was to analyze her sinuses as she has had constant sinus congestion, minus the weeks she is on a heavy course of antibiotic.  We are tired of antibiotics, her system is stronger now and it's time to merge off as much medicine as we can.  In a couple weeks we will meet with ENT again and discuss Natalie's sinuses.  In the meantime I have learned from my dentist brother-in-law that he has had a lot of success with XLear nasal spray.  He has been recommending it to several of his patients.  It seems to help with sinus congestion.  I thought I would give it a whirl.  I started it on Natalie as she was feeling sick and congested, I was very surprised as it seemed to clear her sinuses...and I didn't need to start her on another antibiotic.  Hopefully this trend will continue.  It may not ward away everything but if it helps, hooray!

Isaiah crawls April 22nd.  I love this boy! I can't imagine my life without him.  He looks at me like he knows what I am thinking and has this way of communicating that is hard to describe.  Many times as Tyler and I were gathered around with our children (before Isaiah) it always felt like someone was that he is here that feeling of missing someone has been replaced with completeness and gratitude, and peace.

Alice BMT Clinic April 27th. Good day in clinic, Alice's red cells are normal 13.9, platelets normal 226, and ANC is great 4300.  Her liver tests are still a tad elevated.  I requested a consult with GI and additional liver tests to be done, including an ultrasound...just to make sure we are good.  Also it is good to have a baseline for this point in time.  No additional blood was drawn they were able to use the blood that was drawn earlier in the day for the liver test.  Her stool sample showed elevated fecal fat, but nothing alarming.  The GI doctor was not concerned.  The ultrasound looked normal as well...Phew, good for mamma to know.

--Blair's Baptism May 2nd.  Can I just say this is one of my favorite moments as a mother.  There's something about a child being baptized, or anyone for that matter.  The feeling is so sweet and the reality of the event is so amazing.  We are so proud of you Blair.  You are a wonderful boy and we know your future is bright and you will do great things.  We were lucky to have so many family and friends there to celebrate this moment in your life.

Blair loves to be with his cousins.

Grandpa and Grandma Schellenberg

Grandpa and Grandmother Fish

Mother's Day, May 10th.  I think this year was my favorite Mother's Day of all.  Natalie made me breakfast in bed....I love my kids, they do this every year.  Usually breakfast includes eggs with salt chunks or something strange with it...but I just pretend it's the best thing I've eaten.  The kids crowd around me as I'm eating, so I ask if they want a bite and sure enough they help me finish it which I'm thankful. ;)  This year's Mother's day was different.  I finally decided to not expect my family to pamper me, and instead I chose to serve them with an extra happy "motherly" heart and it ended up being far more meaningful than year's past.  And my favorite gift came from Tyler.  His gift was a journal entry from his journal on April 17, 2015.  It was such a tribute to me and funny all the while. I love that he keeps a journal everyday, I love everything about him.

Growth Hormone Level/Unexplained Fevers.  Alice's growth hormone level was tested and it was high, so we decided to reduce her dosage.  This should help with her aches and pains.  Alice has been having random unexplained fevers over the past few weeks, including bad headaches...maybe the headaches could be from the growth hormone, a known side effect.

IV in Clinic for Alice May 23rd. Two weeks of random fevers and headache is long so I called the on call doctor with Endocrinology to discuss the growth hormone and it's side effects.  Fevers are not a known side effect but the headache could be.  They suggested we take her to BMT, so the next day we were in clinic getting an IV placed and labs tested.  labs indicated elevated inflammatory markers, but nothing else.  She was given a dose of IV rocephin (antibiotic) and we stopped the growth hormone.  Since then the fevers and headaches have subsided.  Growth hormone and the dose will be our next discussion.

***Something huge to note...I was browsing through my blog to see when our last overnight hospital stay was, If I am right it was April 2014.  That is more than a year ago.  Sure we have had ER visits and blood transfusions, etc.  But we have not been admitted for over a year.  This is incredible.  Never have we gone this long without a hospital stay, not even close to this long. And this is real, not a dream, not wishful thinking.  I used to day dream of days when we were not always in and out of the hospital.  So thankful we are!! My dad always said with every new baby comes a great blessing...maybe this is the blessing Isaiah brought to us, this first year of his new life, as Natalie and Alice are experiencing their new lives.

The rest of the post is just This N That...every day is a wild adventure.  If it's not Alice peeing in her bed and our bed all within the same night, then it's Evie leaving silly putty on Blair's pillow so it can cake into his hair all night long.  We just roll with the punches and more often than not we're on the ground trying to punch with all our might.  It's like when you fall over on your bike but you just keep peddling while lying stationary on the side of the road.  And that's the way it goes...would we wan't it any other way....probably not. :)

Wishing everyone well,

The top left corner of the bed is my spot.  I managed to wake up before Tyler and snag this picture.  This is how our morning starts.  I can't say it's the most restful way to sleep.

Hmmm...what could she be eating? Have we not grown out of this yet!
The queen of chips and dip, and she makes her own.
Styrofoam....not good. I'm still finding it weeks later.
Sitting on the bench at the Little Redd Schoolhouse
Alice and Mrs. Redd, Alice went a handful of times to Mrs. Redd's preschool.  She enjoyed it!
I had come home from the store to find that Grandpa Schellenberg gave Evie a make over.  I laughed so hard, but apparently she bugged him about Grandma's new package of Make up until he finally put some on her.


The weren't getting along so they had to put their arms around each other until they could be nice.

Listening to Tyler read to them.
Tyler's favorite thing to do is read to the kids.  That is the first thing he talks about when he gets home from work.
This is usually what Natalie does while Tyler reads...she finds a book that interests her more.

Our neighbors have a pet snake.

Grace came to have a 'late night' with Natalie.  Best Friends in all the world!
When all else fails and dinner isn't ready, kipper snacks save the day.
Since DisneyWorld, Alice sleeps with Mickey every night.

This is what happens when you have girly girls, they try to make their own styles with anything available.
Look close, this is a hat for the toilet used to catch samples for testing, and measure output.  Well I had to recently get some samples from Alice.  Thankfully I sterilize everything afterward because Evie thought it would make the perfect bowl for her almonds.  I almost gagged when I saw it...needless to say Evie had a bowl of almonds all to herself.

Wrapping up the last week of school with some festivities.

Just loving the beautiful tulips at the Bountiful temple.
Pickle Juice!

Isaiah waving, an old video taken in Jan. (5 months ago)--he is growing too fast!!

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.


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 will come.  Tyler has Alice's wish video ready to post (hopefully tomorrow).


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


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,


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,

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 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.


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