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.

Tuesday, July 31, 2012

Finally, some food.

This morning was met with good news from the doctors. Alice will be placed back on the Progression 1 diet. If she can hold her food well enough it will be a good sign that she is on the mend. I recognized this morning how hungry she has been these past couple weeks. I examined her mouth as she slept and I noticed that she has chewed the top layer of her lips to the extent that the rawness is starting to show. My heart sunk. I'm so glad she is able to have some food today.


This is a short clip of her first meal in two weeks.

Sunday, July 29, 2012

You Can Do It!

Around 4:30 am Alice woke me up as I heard her wimpering in her bed.  I came to her side and asked her what was wrong.  She said, "I need my diaper changed".  I changed her, then she asked if I would scratch her back and scratch her bum.  Yes, it's silly she loves her bum to be scratched too.

Then she looked up at me and said, "hey, we didn't pray".  I then remembered that I was so busy watching the olympics on TV when she fell asleep the night before that we did in fact forget to pray.  "Okay Alice, lets pray right now", I said.  She sat up folded her arms and we prayed. 

Alice then asked if we could read a book, I said to her, "Alice Mom is tired and I need some more sleep,"  She said, "You Can Do It Mom!"  Any time our children say the words 'I Can't Do It', we say to them 'You Can Do It'!  She held her hand in a fist and raised it up when she said, 'You can do it Mom'!  Now, how can I pass on that.  So I found two little books and said to her that when I finish reading them to her she may continue to look at them with the night light on but that I would be going back to bed.  She said to me, "alright, but can you get my puzzles on my bed?" 

She stayed awake for the rest of they day while I dozed in and out until the doctor had to tap me on the shoulder at 9:00 am for rounds. I must have been tired because I don't remember anyone coming in or out of the room.

Alice was able to have water with a tiny bit of apple juice in it. She was super happy to drink.


Saturday, July 28, 2012

No Big Changes

Alice was able to have water today...she normally loves to drink water, but refuses to drink much because it isn't apple juice. She wants something more. I was able to spend the night at home last night and enjoyed being with the kids and Tyler. It was fun to come back and be with Alice.   I love being with her. She asked me today if she could have dinner. Then she said, "I want lunch," then she said, "I want breakfast", hoping one of those meals would find her a yes answer.

I wish so badly I could give her everything she wants. Soon...hopefully soon!!

I am amazed at how patient she is--yes, she still has melt downs and she deserves too. Fortunately, she is easily distracted from her problems with games, books, movies, and such.

I said to her, "why do I love you so much?" Normally when I ask my children that question they say, "because I'm yours"...this time Alice said, "because I'm smart." She always makes me chuckle.


Wearing some new sparkly clips, Because her hair is long enough.

Still enjoying the castle.

Natalie was invited to the Homestead to be a part of the Smith's golf tournement for Primary Childrens.  Great day, lots of fun.  I love the Homestead...I have a lot of memories of being there as a kid.  It is beautiful.


Matthew and Blair had a great day.

Evie didn't have as much fun as the rest of us.  Although, she loved playing on the grass, but once it was past her nap time she was cranky...and the fact that she found some random Moutain Dew on the ground and started drinking it didn't help any.  Later Blair told me that he really likes the yellow drink Mountain Dew.  I'm now wondering if Evie was drinking Blair's drink (who else would put a drink on the floor).  And how did Blair get a hold of a Mountain Dew anyway?

The Homestead was a great place to spend a day together.

Last Sunday we went to visit Alice as a family, we weren't going to be home by the time the young men came to bring the sacrament to the house so Matthew left them a note on the porch.  We are very appreciative of the young men who come each Sunday to bring the sacrament to our family.

Thursday, July 26, 2012

Quick update

Just a quick update on Alice. She was doing well enough this morning to go back on a clear liquid diet, however it did not last long as her stomach sent everything through immediately. By the afternoon the doctors had no choice but to return her to being NPO. It is a struggle for me to decline her request for an apple juice bottle, especially after she was able to have one hours before. I did my best to cheer her up. I was finally able to console her with Lisy's make-up bag. I handed her whatever she wanted, and she had at it for an hour coloring her face. I hope there is something left for Lisy when she needs it. We will look for a better day tomorrow.

Alice's line broke today as I picked her up from the chair, the tubes were caught.  This will be the second repair on the same yellow lumen.  Thanks Mitch for doing a great job.  Now we are back to only one clamp on the line.

Having an apple juice bottle earlier in the day with Evie.


Wednesday, July 25, 2012

Natalie Goes Home--A Baby Step Closer for Alice

A great day it was.  Natalie prepared to be discharged this morning by gathering her things and all the fruit snacks she had collected from the cafeteria.  She thought it was so funny yesterday when she called to order dinner and the sweet lady asked if she would like two bags of fruit snacks.  Natalie said, "Mom I didn't even say anything, she just knew." 

Trouble came later today when Tyler brought all the kids to take Natalie home.  While we were removing the tape from her IV (an incredibly difficult process) Blair and Matthew saw a stash of fruit snacks--had no idea they were Natalie's treasures she was preserving.  Blair was in Alice's room and of course Alice catches on to the fruit snack frenzy and asks for some.  Blair so generously shares with her.  When I walked into the room I noticed Alice looked very content and her mouth was busy munching.  I asked Alice if she was eating real food this time and she excitedly smiled at me.  Matthew blurted out that Blair shared some fruit snacks with her.  OOPS!  Well she perked up and actually it was great because today they advanced her diet to water only.  She wouldn't drink any because it was not apple juice, although, after she ate the fruit snack she drank water.

It seems as though Natalie enjoyed herself this hospital stay.  Tyler and I gave her as much independence as we could.  She ordered all her meals, slept in her room by herself last night, played bingo and called in her win--and loved the fact that she was the first one to get a bingo.  Natalie even said she was having a good time during this stay.  The only complaint she had was the fact that she forgot to bring Jerome the Elephant.  She talked with her friend Grace for more than an hour this morning, it was great because in the meantime Alice needed me.  It all worked out smoothly.

I know that all of our successes are directly contributed to the many prayers being offered for us.  The truth is when someone is praying for you it is a tangible feeling of encouragement and determination to move forward as well as a feeling of comfort and peace.  Thank you for your support.


Natalie's bed in this room did some cool things...she thought she was pretty funny.

And I thought I was pretty cool to sleep on a couch bed.
Next door neighbors...Alice is standing on a stool.
Bald Brothers!  Yesterday Matthew asked Grandpa Schellenberg for a really short hair cut.  Blair wanted to look like Matthew so he went behind the corner and plugged in the clippers and took off a strip right down the middle of his head.  Luckily he didn't hurt himself, at that point he had no choice to have anything but a hair cut like Matthew's.  The boys love to come to the hospital and visit.  After a few minutes it's time to can get out of hand in a hurry.

Evie thinks the girls' rooms are a playground.  She was happy to see her Mom.
A much needed nap.
Distraction at its best.  This is round one of Mom's make-up.  She completely forgot she was hungry.  I was impressed with how well she managed her lipstick...the mascara is another story.
Round two...she took a little more liberty with this one. 
Just as she was growing impatient again, as the make-up party was over...Alice received a special giant delivery which kept her busy for 3+ hours.  It was a heaven send.  A beautiful castle that was perfect for her age.  We had a wonderful time building/assembling our castle.  Alice said to me when we finished the castle, "Can I take this home...I promise?"  Many times she wants to take toys home from the hospital, until we explain that they need to stay for other children to enjoy as well.  I guess by saing I promise means she is more serious about her request.  Request granted Alice!

We even put together furniture and it was the perfect size for her Make A Wish Barbie. 

Wow...what a castle--she is so happy.

Barbie seems happy too.

This is one serious princess...she had a great time decorating herself some accessories.

Another great distraction...Monster Match.
I was cleaning the room just before she went to bed and accidentally set a jello in her sight and she caught eye of it and the rest was history.  I figured they would be advancing her diet in the morning to clears, so I broke...I confessed to the nurse and he reassured me that it wasn't going to hurt anything....lets hope!

Tuesday, July 24, 2012

A Better Day for Both Girls--Happy Pioneer Day

Both Natalie and Alice have improved much today.  Natalie has not had any fevers since she came yesterday.  Her lung x-ray looks great.  Since she started on IV antibiotics her cough has improved as well as her ear.  Tyler and I feel like we caught an infection in the making.  We are glad we only had to see the beginning phase.  At some point in her future we will let her body prove itself and see how she can manage with out hospitalization.

Today Natalie moved rooms to be next door to Alice...both girls have the larger rooms.  It's a bit nicer for space.  They also have a view of the city.  Natalie was so cute as she Skyped with Alice.  Alice had taken a five hour nap, and all the while Natalie was patiently waiting to Skype with her.  Natalie said that she wished she could just see her in person.

We celebrated Pioneer Day by me reading a pioneer story to Natalie...unfortunately it put her to sleep before I could get to the best part.  Alice and I celebrated by watching some amazing fireworks from her window.--there must be a grand celebration at the Franklin Covey Field or somewhere near there.  Alice would call out each color of the fireworks.  She loved it.

I think she has asked no less than 100 times for a bottle.  She at one point was pretending she was eating something.  I asked her if it was good and she said yes.  The only way I am able to ease her requests of food is to scratch her back and head.  The last time she had anything solid was seven days ago, and absolutely nothing starting two days ago.  Hopefully by Thursday she can start on clear liquids again.  We are thankful for IV nutrition in the meantime.

Alice's ANC has dropped again, but she has been responding favorably to the steroids.  Also we learned today that her chimerism is actually in the 60 percentile rather than 40 percentile.  The misinformation was happily welcomed, although we have some climbing to still do, we are happy it is higher than we had thought.

Tyler is home with Matthew, Blair and Evie.  When the nurse asked me which room I would be sleeping in, I smiled and said which ever one is more quiet.


Monday, July 23, 2012

Alice and Natalie together at the Hospital

Yesterday was busy I never had a chance to post.  I will try to catch up on things.  The night before last Alice was having a hard time keeping her heart rate up so they did an echo cardiogram at 3:00 a.m.  Everything was normal...phew!  Yesterday she had large volumes of stool.  It was a hard day for her.  This morning was especially difficult.  The doctors took her completely off liquids and everything in hopes that her stool out put would improve.  Finally by afternoon her body began to 'slow the flow'.  She is receiving her nutrition through IV now.  We hope that we will see even more improvements tomorrow as well. 

When I came into her room today the nurse told me a cute little story.  She said when she walked into Alice's room, Alice motioned to her to come close.  The nurse came close and Alice pulled her closer, until she was in whispering range.  Alice then whispered in her ear, "I want a bottle". 

The nurse (Andi) said it broke her heart.  Later with each new person who entered the room she would ask them for something to eat or drink.  It must be hard for her to understand why nobody is letting her eat.  Yet she is being so patient.  When I laid by her side she stroked my face so gently then said, "Mom, I want something to eat."   I quickly pulled out a game and we played for a while. 

Today Grandmother Fish came to visit and kept her busy for sometime talking about her upcoming birthday...they made some big plans.  Aunt Amberly brought her a darling Rapunzel balloon.

Alice looks much better tonight...what a comforting feeling it is to see her feeling better. 

As for Natalie she decided to join Alice in the hospital.  Last night she had a temperature of 104 degrees.  She was complaining of her ear hurting.  We brought her to clinic and they decided to keep her overnight.  Her ear looks infected.  She had an IV placed and began some IV antibiotics.  Her stay should be short.  She developed a little cough today so we are hoping it won't amount to anything.  Surprisingly she is in good spirits.

I caught a good window with Alice this morning.

Natalie did not want to deal with me this morning, but I had to get her on video.

Saturday, July 21, 2012

Graft vs. Host Disease

Day 213 Natalie, Day 186 Alice 

It has been a discouraging day for us.  Due to Alice's scope looking healthy and good we were hopeful that pathology would say that she does not have GVHD.  When Dr. Boyer came in to see Alice on rounds, he was optimistic that she would be clear of GVHD.  A couple hours later he came in to deliver the news we were hoping not to hear.  She has a pathology grade 2/3 graft vs. host, which is considered advanced, however, in a clinical setting she shows less severe signs than the results pathology indicated.  Basically it means that her body is managing the GVHD better than what her labs indicate.

They feel the reason she has GVHD is because of the rapid tapper of the anti-rejection medication. It has been very tricky with Alice, the doctors felt they didn't have a choice regarding her tapper because she was threatening to loose the graft.  Her total body chimerism is down in the 40 percentile currently.  It's difficult to understand what her body is doing.  Normally you don't see GVHD until the chimerism is almost all donor.  Alice is not following the rule book and it's puzzling the doctors.  The treatment for GVHD is adding immune suppressants, such as steroids and increasing her anti-rejection medication called cyclosporine.  This is one giant step backward in her recovery (almost two months worth) and adding a complicated twist.  Her graft will become even more fragile with the added immune suppressants.

Tyler and I are having a hard time sorting out our feelings, yet we feel hope that she will pull through...if the graft is lost, the thought of repeating transplant is overwhelming...especially in her fragile condition.  Alice is a strong girl and will never give up easily...nor will we.

It's interesting how we naturally as human beings find something hopeful to hang on to when disheartening news comes our way.  Quickly, we begin looking at all the advantages we have in our court.  Her situation could be much worse, although we are concerned we feel that she has many good things going for her.

If anything, sometimes all you have to hang on to is hope, faith, and prayers.

When I tucked Natalie into her bed tonight she willingly and so easily put on her nasal cannula, and peacefully went to sleep....just one more thing to be thankful for.  What a sweet thing that was for me.


Friday, July 20, 2012

Colonoscopy for Alice

Alice had a colonoscopy this afternoon.  Everything went well.  She was anxious for something to eat and unhappy when she woke from the surgery.  The GI doctor (Jensen) said everything went well.  He said her colon looked as good as any.  This was reassuring.  The biopsy was sent to the lab.  We hope that pathology will review it sooner than later so we can determine if she will be able to eat and when.  Dr. Jensen did mention that he would be surprised if she has graft vs. host because of how good her scope looked.

Tyler stayed with Alice and I for a few hours today, until the surgery was over...then he went home to the other children.  Luckily things at home are becoming more manageable. 

Natalie had a hard time adjusting to her nasal cannula last night; It was a struggle for her and I.  I slept in her bed to keep an eye on her pulse ox and nasal cannula.  It took at least two hours for her to finally decide to wear it.  Throughout the night she would take it off...then her monitor would alarm as she fell below 90%.  I would roll over and tap her on the shoulder--in her sleep she would put it back on her nose.  This happened all night.  It's hard to get used to a nasal cannula.  Hopefully tonight will be a little easier for her.

Tyler and I feel like as she becomes more physically active she will no longer require oxygen at night.  Throughout the day we have her breath in an apparatus that is used post surgery to prevent pneumonia.  It really helps open her lungs.

I would love it if tomorrow we heard back from pathology on Alice's biopsy.  I'm crossing my fingers!


 We had some visitors today all the way from California.  It was so fun to see the Slades.  Bonnie (Lisy's sister) has not seen Alice and Natalie since before transplant.  We are happy they were able to see us while in town. 

                                                      Cousins Jacob and Alyssa

                                        Alice peeking her head out just before surgery

Thursday, July 19, 2012

The Fight....and....The Attitude!

Alice woke today sad and hungry.  She is tired of having chicken and beef broth.  "No more broth," she says..."My tummy wants eggs and sausage"!  We sat and cried together for a while.  The child life specialist came in with some shaving cream and toys, even that couldn't distract her from the hunger pains. 

Her hemoglobin was down to 6.9.  She is receiving blood currently...and sleeping too.  I thought I would start on this post while she is sleeping.  With blood products they pre medicate with Benedryl, which in our situation has proven to be a tender mercy as she is able to sleep though the transfusion and the hunger pains for a couple hours anyway.  Tomorrow she will receive her colonoscopy, hopefully in the morning.  Although, the scope will be over she will not be allowed to eat until the results are determined, which could be as late as Monday.  Needless to say we are in for a long weekend...especially for Alice.

I will be praying for her little tummy to be comfortable.  Maybe tonight she will be past the hump of hunger pains and will find some comfort.  Kind of like fasting--after so many hours you don't feel the pain, just weakness.

She received IV nuepogen to help boost her ANC--it had dropped to 200.

Alice did not need oxygen last night.  Improvements are happening.

Over the past couple months I have thought of a quote/story I came across some time ago.  A friend of mine shared it with me and I love it.  It's called The Fight...and...The Attitude.  What I love about it is the attitude.  Hard things happen in life and our attitude is sometimes the only thing we can control.  To choose is a gift--one no one can take away...and to choose to be happy is a choice only we can make for ourselves.

     "I did not provoke the fight so I feel no remorse for what I was forced to do.  We were arguing, and seeing that I was right and he was wrong, he decided to fight to cover up his stupidity.  He swung at me first, but being in top condition, I was able to act quickly and block his punch neatly with my head.  Whereupon I jumped to the ground, knocking him down on top of me.  Then, I placed my ear in his mouth and poked his finger several times with my eye.  His teeth hurt so badly from the strength of my ear that he became irate and tried to kick me, but I cleverly blocked the onslaught with my ribs and face.  I scrambled to my feet and ran to my car in hopes that I would get away and save this man from my deadly hands.  Before I could start the engine, he pulled me from the still open door.  That was it, the last straw.  I lost all control.  There would be no mercy! Taking him in my death grip I punched him in the knee two or three times with my stomach, then hit him hard in the fist with my teeth.  He had it, I could tell after that, he didn't even try to pick me up off the ground.  He was too chicken!"

I hope that makes you it always does me.  This poor person had no room in their heart for self pity.  What a beautiful thing. :)


                              Broth, water, jello, and grape slush are the staple around here.

                                              Blood transfusion half way finished.

 Luckily Alice did not have to change blood types due to transplant...her donor was also O+; makes it a bit easier.

Peacefully resting...note the bottle isn't just juice.  It has a added laxative to prepare her for the scope.  So far she has had two bottles--we are on target.

Alice later felt better and wanted to play in the shaving cream

Looking a little puffy.  Her kidney function is normal though.

Tyler said Natalie woke up this morning and put her Make A Wish T-shirt on and the button, she wore it all day.  Is she excited?  Glad Tyler got a picture of it.

Wednesday, July 18, 2012

Clinic Visit Leads to Admit

Alice came to clinic today for a follow-up from our crazy day Monday (two posts earlier will preface this post). She is still having large volumes of diarrhea. Her tummy is hurting, luckily not constantly. Half way through the day the doctors said we were finished and could leave with instructions to keep her on a clear liquid diet to see how her stomach manages. Just before leaving the clinic she had another giant diaper which was concerning to the it resembled what might appear as Graft vs. Host disease. GVH can only be determined by a biopsy of the intestine. The doctors have scheduled her for a colonoscopy on Friday.  Therefore, Alice will stay in the hospital until we have some solid answers. 

Her hemoglobin went from a 7.1 to a 7.9. This is great--she may not need a blood transfusion.

If she has GVH it would be considered acute rather than chronic due to her symptoms. Acute is easier to get a handle on. Alice is on day 183. Originally GVH within the first 100 days was considered acute, after 100 days it was considered chronic. The idea behind this has changed and is now based on an individual symptom basis. GVH can present itself through the skin, gut or liver...or all of the above. Alice's would be gut.

With graft vs. host disease in the gut, the body attacks all the absorbing villas in the stomach and intestine so the body is inflamed and unable to absorb fluids and nutrients. The fluid naturally created by the stomach has no where to turn contributes to the large volumes of liquid stool. Alice is on a clear liquid diet for the next few days to determine if she still produces large volumes. Hopefully by not eating anything she will slow down the process and prove that she truly does not have GVH.

I have wondered if she is following the same pattern we saw in Natalie when she was suspected of GVH, which in turn was unofficially determined as intolerance to gluten.

Regardless the biopsy will be the only true indicator and will be obvious between the two scenarios. If she has GVH she will be placed on a higher dose of her anti rejection medication and possibly some added medications.

The doctors feel that if she has GVH it could be a result of a rapid taper as her body's chimerism was falling and the only choice was to speed up her taper.

Next week her current chimerism test should be reported, which will be helpful.

Alice's immediate challenge is going without solid food. She is hungry and growing impatient. I wish I could take away her hunger pains. If Alice's situation does not improve within four days she will be placed on TPN for nutrition.

Many things come and many things go...we are feeling better about Natalie's new gluten free diet and realizing that it is a blessing in disguise as we are eating healthier and becoming more aware of what is really in the food we eat. Each new challenge that comes and sometimes goes has made us more knowledgeable and prepared for the next obstacle around the corner.

The idea of praying for your trials to go away is silly, possibly immature...rather we are praying for extra strength to manage the trials that come, including prayers for a small bit of time between them...even be it a day...just enough time so we can find our feet on the ground again.

Tyler and I made an awesome schedule for our family during this time of quarantine. It included exercise, schooling for the children, discovery time, games, etc. Sadly, we admit that our schedule has many loop holes and disclaimers. We feel it a privilege when followed as it indicates that life has some rhythm. We decided that flexibility is our motto...and sanity is a perk. ;)

Part two off this post will come tomorrow...I need to go to bed.

Thanks again to all for your prayers.


 Buying time with the Care Bears play set.  I love the toys at the's like the toys in nursery--old school, the kind I remember playing with.

            She is telling me that her tummy hurts...aka a grand movement approaching.

The result of those grand movements....double diaper duty.  Enjoying our room in ICS--a bit more comfortabel than the clinic.

Tuesday, July 17, 2012

Make A Wish

Fun, Fun, FUN.  Today was a lot of fun.  The kids must have asked 200 times when it would be 5:00 so we could head to the wish house in Murry.  Wow...what a great experience it was.  The building is beautiful and the people are wonderful.  An inspiring place.

Our sweet wish grantor's Ann Marie and Corrine gathered us around and played a game to help the girls brainstorm about what they want to wish for.  It was as much fun for everyone as it was for Natalie and Alice.  By the end of the game the girls decided on their a back-up wish.  They placed their wishes in a metal capsule and unlocked the door to the wishing well.  Behind the locked door was a beautiful room with glass flooring (which had changing lights), a water fall and some enchanted music to go along with the changing lights.  The girls loved it.

In a few weeks we will find out if their wishes are granted.  Here is a list of wishes that Natalie and Alice have been considering...we will tell you the wishes they chose and what was granted soon.

A family size bicycle
A trip to New York to stay in the Plaza Hotel like on Home Alone 2
A trip to Hawaii to see sea turtles, whales, swing on vines, drink from coconuts and see grass huts.
To be an Elephant trainer and have Elephant things
To wish that her siblings could have iPads so they will leave her iPad alone
To live in a tree house with jungle animals all around

To be Rapunzel
To meet Rapunzel
To be a Princess

Tyler and I love how the Make A Wish Foundation began so we added the story's link to this post.  It's true...the Make A Wish Foundation is special.  Our family has yet to experience the wishes, but already the healing has begun.  Having something to look forward to is already healing.  Over the past several months Natalie has enjoyed talking about the day she gets to make a wish.  During the times when she was most discouraged she would ask if we could talk about her wish.  Merely talking about it somehow made the hard times seem easier.


I don't have many pictures now, but will add more later. 

                                                   The welcome banner in the door way

                                     Natalie placing her wish and Alice's wish into the capsule

                                              The pictures below are inside the wishing tower

Monday, July 16, 2012

Crazy Day in Clinic--PICC Line Pulled-IVIG for Alice

Well Today Monday...was CRAZY!! It's Day 208 for Natalie and Day 181 for Alice. We can't believe how the time is passing; although, today the time was standing still for me. For Natalie today was good. For Little Alice it wasn't as good.

Natalie had wonderful counts. She is drinking enough, eating well and feeling good. Natalie asked me many times as we drove to the hospital this morning if today she can have her PICC line out. I wanted to tell her yes, however, refrained myself in the event that it wouldn't happen. BIG NEWS...after her exam the doctor asked Natalie if she wanted her line gone. She smiled and said yes, until she remembered the stitches that had to come out too. The smile quickly turned into tears and it was many moments later that she allowed the removal process to happen. They sprayed some numbing spray on her arm, which I think helped. Her only motive to have it removed at this point was the promise that she will be able to swim once it has healed.

Then she made me promise that I would not tell Dad or the boys about her line...she wanted to surprise them when we got home.

A new thing with Natalie has developed. During the past week or two while Alice has required oxygen at night, it got me thinking about Natalie's oxygen levels...I took the monitor off Alice and throughout the night (two nights ago) I put it on each of the children including myself to see what our saturation levels are. I should have been a doctor...I had more fun staying up all night experimenting with the pulse-ox. I tested different sleeping positions on the children to see if the levels would rise. The boys were in the high 90's. Natalie and Alice were in the mid 80's. While doing this I discovered that Natalie is truly in need of oxygen while she sleeps.

We have arranged with the doctors to have Natalie on oxygen nightly as well. This is mostly temporary and will give her more energy during the day. It can be hard on the heart to have low levels for extended periods of time.

Now for Alice. Her counts are low, she likely will need blood on Wednesday or Thursday. Her hemoglobin was 7.1. ANC was 600. She kept me hopping all day. She seemed okay, although shortly after the doctors entered the room she threw up all over her and I. The pink bucket was too far away.  We cleaned up then began the exam. She wasn't feeling well and it was obvious. Alice received IVIG today--so far no headaches. Alice has terrible diarrhea, which seemed to find its way onto everything in the room.  Before leaving I wiped the room down with some heavy duty hospital style Clorox wipes. They collected some stool samples and so far everything has been negative. Graft vs. Host is now a consideration.

We hope and pray that she is not experiencing Graft vs. Host.

When I arrived home Tyler could see that I was spent. Moments later Alice had another big diaper, Tyler jumped in and changed her. Once he finished I looked at him and couldn't help but laugh--the front of his shirt was covered in poop. We both just laughed. Sometimes laughing is the only thing you can do, it's amazing the transformation that can happen with laughter.


                                                The PICC line is gone...just a band-aid now.

                                                                   You did it Natalie!!

Alice receiving IVIG with no clothes, she soiled them.

                                        Natalie loves to pass the garden as we leave the hospital.

Sunday, July 15, 2012

Ramble On

I think we've all at one point in our lives have been given advice or understanding from someone we took for granted or just plain blew off. So from the very beginning of our girls journey, when the doctors told Lisy and I it would be at least a year before our lives would become close to normal again, I thought: “sure, it will be tough but we'll just saddle up and get it done." I realized now how green that thought was. As we work to keep the girls healthy and out of the hospital the other responsibilities start to weigh down on both of us and little things can start to loom large and before we know it we get bogged down in arguments on subjects that never had any worth in the first place. Just being quarantined is enough to get us riled up as of late. The other day I had become frustrated enough that I told Lisy, "I need to get out of here." She asked where I was going, and I replied with a terse, "I don't know yet." But I grabbed the keys and split. I was far too short with her, and knew that I would need to apologize when I returned. I made it to the parking lot a few miles away, parked the car and wondered what the conversation would be like when I decided to man up and go back home. A couple hours later when I pulled up in the driveway I noticed Lisy wasn't home. She had piled the kids in the car and went for a drive. (When the kids are too much a drive is how we get them to calm down.) When she came home, I apologized and for the life of me, I couldn't remember why I became so short. We both realized how strung out we have been these past couple weeks and let whatever it was that was causing the strife go. It wasn't our first argument and it certainly won't be the last. But as long as we remember why we love each other; at the end of the day we can always seem to find ourselves back on the same page together.

We are so thankful for the sent packages of games and projects for our children to do. They have been a life saver for Lisy and I as they have kept the kids busy and productive.

Today is clinic for the girls. Natalie of course is not looking forward to it, but Alice is. The doctors have been hinting that soon they will be able to remove their lines.


Monday, July 9, 2012

Great Day in Clinic

Day 201--Natalie, Day 174--Alice

Only good news today..Hooray!  Natalie and Alice are doing great.  Counts are good.  Natalie's ANC is 2500, Alice's is 3400.  All other labs are stable.  The doctor said Natalie can stop her nightly fluids.  If she can drink enough during the day she will be able to stay off the fluids and soon will have her line removed.  Alice's fluids were cut in half.  She will be able to stop them once she is done with the Cyclosporine (in 3-4 weeks).

Day 194 (July 2)--Natalie finished tapering her Cyclosporine.  Day 200--Last Mag fluid.

We hope for a good week.

I love Smith's Marketplace...they have the biggest gluten free food selection I have found yet. I also love all the great pointers many of you have shared.  We actually found a bread Natalie likes.  It is in the health food freezer section at Smiths.  We are making progress each day.  I was telling Tyler that I feel more healthy...then realized that I am eating healthier along with Natalie. 


I found my camera :)  I added pictures to some previous posts.

                                      Another favorite icon at the hospital...The Painted Horse.

Thursday, July 5, 2012

Alice Came Home Today

Yipee!!  Alice came home.  She needed to go throughout the day on room air before they would let her go home.  She will require oxygen for possibly two more weeks while she is sleeping.  Thankfully this is something we can do at home.  On our way home from the hospital Matthew called to see how close we were and Alice heard his voice through the phone, she yelled from her car seat, "Matthew, I'm coming home!!"  She was so excited to see everyone.

Each night in the hospital I would try and sing a lullaby to her.  She only wanted me to sing the Happy Birthday song.  I think she requested that song, because it's got to be the only song I can sing while the tune still recognizable.

We had some fun times this past week in the hospital; played a lot of games, read a lot of books, and watched A LOT of Care Bears.  I have some cute pictures and videos of her that I will post.

I keep saying "I will post pictures, etc."...reality is now that I found my USB cable, I can't find my camera.    Isn't that the way it is sometimes.

Natalie told me when I came home with Alice that she missed me and asked that I never leave again.  I would love to commit to that promise :)

I took Natalie to the store and she and I picked out some more gluten-free food.  I have to admit that I had a little break down while shopping.  I had to work hard to hold back the tears.  Seeing Natalie looking intently for gluten-free foods and wanting so badly to see the same varieties she would under normal circumstances was hard for me to swallow.  I know once I have enough uninterrupted time at home I will be able to create meals just as satisfying.  With that said, I see that under her new diet she is becoming more healthy.  She eats more fruits and vegetables.  She loves chicken legs...we know how to make good chicken legs.  I have her taking a really good gluten-free vitamin to fill in any gaps of nutrition.  Over the past couple weeks Natalie has become more confident in herself.  Tyler and I feel like she has learned a great amount of self control (due to her new diet) which in turn has strengthened her confidence...such an amazing fact of life.


                                                       Cinderella is going home today!

 The moment Alice walks in the door she yells, "Hey guys, I'm home!!"  Waiting for the grand welcome!

                                                             So Good to be home!