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, October 18, 2015

Summer 2015 (part #1)--Alice's Second Donor--Happy 2nd BMT Birthday Alice!

Summer 2015 is coming in three parts. #1 Alice's second donor (this post), #2 Summer overview (next post) and #3 Our summer long yard project (last post),

I was sitting in church today when a friend text me to wish Alice a happy BMT birthday. Suddenly I looked at the calendar and sure enough it is October 18th.  Wow, how did that slip past us?  I remember when Tyler and I would count each passing day post transplant--some days felt like weeks, and now we are moving along with life and forgetting the very moment that consumed our every thought and motion.  When I told Alice today, she said..."We better make a cake." :)

AND......what a perfect day to Introduce Alice's second HERO.  ALLAN MASSIE from Maryland.

Today marks two years post Alice's second transplant.  We have been exchanging conversation with Allan for sometime, it has been wonderful to learn of this person who gave her another chance at life.  Allan is awesome and wrote a little write up of his side of the will always be a great piece of history for us.

Also I was able to get Alice's first donor's side of the story this summer.  I look forward to posting that on her 1st BMT birthday this coming January 17th.

Words can not describe how thankful we are for Allan and Michelle as Alice's donors.  Every time I think of them I want to reach across the country and give them warm hugs and sit in their presence.  Maybe someday we will meet them in person.

The following was Allan's first contact with us....


Maybe you have received my contact information already. I donated bone marrow in October 2013, that apparently went to your daughter. I got your contact info this morning, and my wife and I immediately found your blog. We've been looking at the updates. I'm glad your little girl seems to be doing well.

Maybe you'd like to know a little bit about me. I live in in Baltimore, Maryland with my wife and our two kids. Here's a picture from our vacation last summer:

I am an epidemiologist and I do research on kidney and liver transplantation, although I joined the bone marrow donor program before I started working in the field of transplantation (or before your daughter was even born... imagine). Since I've done research on live kidney donors, it was interesting to me to get a little firsthand experience in the world of donation, even though donating marrow is nothing compared to donating a kidney.

If you like, I'd be happy to write a note for your blog on my experience as a donor, which was quite positive.

Allan Massie with his beautiful wife and children

The following is the narrative that Allan wrote telling his side of the story...
very good and very interesting...
especially motivating...

I joined the marrow donor registry around eight years ago (before Alice was even born, I think). They had set up a table at my graduate school. I don't really remember signing up, but I'm sure it didn't take more than a few minutes. It seemed like a good thing to do, but small, like signing a petition or wearing pink for breast cancer.  The only thing that made it seem significant, to me, is that they asked for as many kinds of contact info as possible, in case they had to reach you in ten or twenty years. They gave a card for my wallet, which occasionally reminded me that I had signed up for this thing. Other than that, I never thought about it.
Maybe four years after that, December 2011, I got a phone call. I might be a match for a patient, a young girl. They were contacting multiple donor candidates to try to find a donor. Now it seemed more real – someone was sick. I went to a clinic where they took some blood for tests. I had a few rounds of phone calls with a coordinator, but these petered out. I figured they'd chosen a different donor.
(Now, looking at Alice's parents' blog, I know that was the case. It looks like she received her first marrow donation in January 2012. Her first donor was a pediatrics resident; I work in biomedical research. Coincidence? Maybe people who do health-related work are more willing to sign up, or maybe they're easiest for the registry to reach.)
I got another call in June 2013. I was now determined to be the best candidate donor, for the same patient as before. I was asked to come in for additional bloodwork and a physical exam. The surgery would probably be some time in August; no, October. A date was set.
Over the course of this process, there was no do-or-die decision moment. The coordinator never put any kind of pressure on me, and I knew that I could walk away at any time. The pre-donation workup gave me plenty of time to consider the decision; by the time I was formally asked, my mind was long made up. Anyway, it wasn't a hard decision. I didn't much worry about the risk. The surgery carries a miniscule risk of death or paralysis, but the same can be said of my daily commute. I wasn't worried about being in pain for a few days or even for a few weeks; I figured that I could just get through it, like a bad cold. I was concerned about the possibility of mild long-term disability: what if I had recurrent pain or walked with a limp afterward? But that didn't seem likely. My expenses would be paid for. I had excellent support at work. (I work in the field of solid organ transplantation, so my office pretty much *had* to support my donation.) In short, aside from some temporary pain, I didn't see any downside, and the potential upside – to save someone's life – seemed huge. So it was easy to commit to donating.
(Reading Tyler and Lisy's blog from mid-October 2013 fills me with wonder. I had no connection to this family, apart from excellent HLA match with one of their children. At the time, I didn't know their names or where they lived. And yet our trajectories, thousands of miles apart, locked into synchrony. Two operations, two hospital stays, and a bag of cells traveling across the country.)
Early on the morning of October 16, 2013, I went to Georgetown University for the operation. I signed a few consent forms. A relative trained in hypnotherapy had volunteered to perform a hypnotic induction to reduce anxiety and pain, so we did that. He is convinced that it worked; my intuition tells me that it made no difference, but really there's no way to know for sure. In any event, it did no harm. The anesthesiologist started the anesthetic, and as they wheeled me down the hall, asked me to count backwards from ten, and… scene.
I woke up feeling pain, but mostly intense weakness. I had thought (perhaps right up until the operation) that removing marrow was like scooping ice cream. In fact, they pull out marrow-enriched blood from the bone. So they had taken 1300 mL of fluid from me, causing dehydration. They started infusing me with autologous (self-donated) blood immediately, but that took time – around an hour, I think. During that time, my nausea ebbed away and my strength came back. After two hours or so, I was still pretty weak, but I ate a pastry, then a bunch of saag paneer, then more pastries – I was ravenous. My hip felt like a really sore muscle (a strange feeling, for a bone). After around 4 hours, I could stand for brief moments. I spent the rest of the day sore and tired, but feeling better over time. I did a bit of work that evening, from my hospital bed.
The next morning, I was discharged. By then I was capable of walking short distances, although after my wife drove me home I pretty much stayed in bed. 
(This was the day of Alice's transplant. There are pictures of the family, posing with my bag o' marrow.)
The rest of recovery was uneventful. I lay pretty low for a week or so. I have a desk job so I was able to work from home. I think I was back at work on Monday, four days after hospital discharge. I don't remember exactly, but I would guess that the soreness was a minor concern after about a week and unnoticeable after about three weeks. Then I went on with my life. Other than a few followup phone calls from the coordinator, I didn't really think about it.
One year after the donation, I heard from the coordinator that my recipient was alive and doing well. I was pleased, of course. To be honest – I hope the Fish family doesn't mind reading this – I would have been disappointed, but not devastated, if the outcome hadn't been good. I donated in order to give someone a chance at a good outcome. I knew from the outset that it might fail; I had decided that the donation was "worth it" no matter how it turned out.
A few days ago, I submitted a form to my coordinator with contact info, to be passed to the recipient. The next morning, I got the corresponding form from the family in my email inbox. My wife Googled "Alice Fish" and we immediately found the blog telling the story of Alice and her sister. I've read portions of the blog, out of order. Now that "my recipient" isn't anonymous to me, I feel more invested, and more pleased that she seems to be doing well.
A number of people have described my donation as "heroic". I don't see it that way. I didn't rush into a burning building, or jump into a flooded river. The risk to me was very low. The recovery period wasn't exactly pleasant, but it was no worse in scale than, say, a bout of the flu. The astonishing thing about the donation to me is that something so comparatively minor for me can have such a major effect for someone else. I am proud that several friends and relatives have registered for the bone marrow registry after hearing about my donation.
I wish all the best for Alice. I don't know very much about SCID. From the blog, it seems that even if the graft continues to succeed she will continue to have some challenges. I don't know whether the graft might fail in ten years, or twenty. But I am happy if my donation has improved her quality of life. Alice, and all of us, are fortunate for every good day that we get.

Tuesday, October 13, 2015

A Riddle

Just for fun...I'm stalling while I get my summer post done, my brain got distracted with this riddle.  I started to solve it, got frustrated after nearly 40 minutes....I know that is sad, but I had to step away for a moment then started fresh again.  My goodness I haven't really used my brain in a long time in this way...I don't have to think like this to make dinner, clean a house and play with the kids.  It was good for me.  Give it a try.


Einstein wrote this riddle early during the 19th century. He said 98% of the world could not solve it. 

"There are 5 houses in 5 different colors. In each house lives a person with a different nationality. The 5 owners drink a certain type of beverage, smoke a certain brand of cigar, and keep a certain pet. No owners have the same pet, smoke the same brand of cigar, or drink the same beverage."
The question is: Who owns the fish?

1.    The Brit lives in the red house.
2.    The Swede keeps dogs as pets.
3.    The Dane drinks tea.
4.    The green house is on the left of the white house.
5.    The green homeowner drinks coffee.
6.    The person who smokes Pall Mall rears birds.
7.    The owner of the yellow house smokes Dunhill.
8.    The man living in the center house drinks milk.
9.    The Norwegian lives in the first house.
10.  The man who smokes Blend lives next to the one who keeps cats.
11.  The man who keeps the horse lives next to the man who smokes Dunhill.
12.  The owner who smokes Bluemaster drinks beer.
13.  The German smokes prince.
14.  The Norwegian lives next to the blue house.
15.  The man who smokes Blend has a neighbor who drinks water.

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,