The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Thursday, May 31, 2012

A Better Day

Tyler said last night was rough without having another hand, however, it was initially his idea to send me home last night, it worked out better anyway.  My parents brought Evie and the boys to visit yesterday and when Tyler saw how happy Evie was to see me and snuggle with me, he told me that I needed to go home and be with her.  I was so excited to do so.  Of course I was calling the nurses through out the night checking on Natalie and Alice.

This morning I dropped the kids of at my Moms and headed back to Salt Lake.  By the time I arrived Tyler had the girls settled.  It was a rough morning for Natalie.  She ended up getting an IV placed, and had another nasal swab. Two attempts for the IV and two attempts for the nasal swab.  She really is a trooper. 

Natalie also had another x-ray today, they thought they heard some fluid in her lungs.  We haven't heard back on the news can be good news.  She seems well to me.
We sure hope we can do some really fun things with Natalie soon, she is beyond ready for a good time.  We are so lucky to have the best view in all the hospital.  She and I sit next to the window and watch the city, and right below our window is some major construction, we have been watching the work move along, big empty dump trucks pull up next to the giant backhoes until their buckets are full then they drive away, dump the dirt and come back for another load.  Again another sign of boredom, I'm finding the construction so fascinating.  I think they need more dump trucks, the backhoes have a long wait period.  I've been analyzing their work and continue to check on the progress.  I surely do come from a long line of engineers and contractors, too obvious.  I've tried to get Tyler excited about it, but he thinks I'm weird.

We have seen a difference in Natalie today.  She must be feeling better, because she has been happier and hasn't complained too much regarding pain.  Her fevers have slightly improved.  Her PICC line must have been contributing to a portion of her fevers. 

The doctors would like Natalie to have another PICC placed on Monday.  I wish she didn't need it anymore, she is so close to not needing it.  Yet still a possibility that she can go without a line.


Feeling a little better

A yummy strawberry milkshake...bite #1

Bite #2

Bite # 3
She maybe had three bites total

The famous's so cute.  She is proud of her swirl.

Just playing around.

Wednesday, May 30, 2012


It has been a very long day.  Much has happened today, we received some very helpful news.  The results on all the tests have been negative except one called norovirus II, which is a stomach/intestinal bug that can be fairly mild to most people but for the girls it's yucky.  This explains a lot regarding her symptoms.  We are happy to rule out graft vs. host disease.  However, it's not just as simple as a virus.  Natalie is actually (most likely) dealing with three different things, which is why she is more sick than Alice and having such a difficult time.

First, the norovirus.  Secondly, she is anemic and received a blood transfusion today...this could possibly be due to the fact that her body is switching to a new blood type which can cause hemolysis (breaking down of the red blood cells).  Last of all, the doctors saw on the echo cardiogram a collection of possible bacteria growth on the tip of her central line which drops just above her heart--possibly this is the main source of her reoccurring high fevers.  It's very likely that some bacteria was lingering from her last line infection a few weeks ago and somehow found its way to the new line....bacteria loves plastic and can make a permanent home there.  We hope to see her fevers subside with the line removed.  Strangely, there have been no positive blood cultures.  Apparently you can still have a line infection and never grow anything in a culture.

Natalie's PICC line was removed late this evening, by the nurse at her bedside. It does not require sedation like a broviac line removal. She hollered and wasn't happy, but she did it and it's over.

Now, the tricky part is managing Natalie's care without a line...not even an IV at this point. She is completely free. This is a shot in the dark, but the doctors are going to see how it goes. We will finish all her antibiotics orally, she will need to drink lots of fluid and find magnesium rich foods to fill her diet. It would be awesome if she didn't need another line. Of course, many blood draws ahead, however, the doctors are going to limit that as much as possible. Some of the labs can be done with a finger poke.
Alice had her dressing changed because she spilled Gatorade and some landed on her dressing.   Even though it may not have soaked inside we changed it anyway...better safe than sorry.  I came home to be with the boys and Evie.  They were happy to have mom for the night.  Tyler did a fine job tackling both Natalie and Alice's room single handedly.  He had big tasks to accomplish too, with Natalie's, PICC removal, and Alice's dressing change.

It's always a bummer when the girls get sick, however, we feel so fortunate that they haven't been more sick. It's amazing that they haven't had such viruses sooner or other contagious illnesses. It's truly impossible to avoid everything, we feel so blessed that we have been so healthy since transplant considering our vulnerability/weak immune systems.


Alice is so playful, she is full of energy non-stop.  I went to put the sheet on her bed and she slipped under the sheet and wanted to hide.  So I played along with her silliness.

Playing Hide N Seek with Alice.

Natalie didn't have much to say, but more today then yesterday.  She has spent most of the day feeling cold, hot, nauseous, and weak.

fish decal...great way to decorate

cute paper balls that were fun to make

Thank you everyone, we are so grateful

Thank you to all who have orgainzed the  Zumba Fest and Feast Benefit on June 16. We are so grateful for the love you have shown to our family.

Zumba Fest & Feast Benefit

Tuesday, May 29, 2012

A Midnight Walk

Today was more difficult.  Natalie had to do another nasal swab, which is terrible.  The doctors ordered an Echo cardiogram.  It didn't go very well because she struggled to cooperate with the technician.  Natalie is incredibly sensitive right now and every little thing bothers her and hurts her.  The technician wasn't able to gather the information he needed, because she had a hard time calming down which didn't allow the ultrasound to pick up the proper images.  Therefore, the doctors decided it would be better to do the echo in her own room, where she felt more comfortable.  It was still a struggle, but she did it.  No results yet, however, it looked fine from what we could see.  They wanted to check for vegetations (bacteria) on the heart.

Other tests are pending, however, many have reported negative.  There is a posibility she is having graft vs. host disease.  This can only be determined by a colonoscopy.

Natalie requires oxygen while she sleeps as of late. 

Alice is climbing the walls and feeling great.  She is still having diarreah, so until we pin point her status she will hang out here at her favorite place.  Sometimes it's just easier to have them both here.  It's always better for Tyler and I to have each other, and when both girls are here, we can be together when we need to make hard decisions or jointly help Natalie with things that are hard...especially we love having each other's shoulder to lean on.

We hope, as we have each day this week, that tomorrow brings more answers.

We are missing the kids at home and I continually think of little Evie.  I miss her.  I think my last few posts have been somewhat random and even hard to follow, I haven't proof read any of them, I've been a little sleepy while writing them.

Last night Natalie and I took a midnight walk down the empty quiet halls of the hospital. We are encouraging her to walk and move around so her lungs can stay healthy. She and I had a great time. She asked to see many places that we talk about, such as the doctor's offices, pump room, life flight, main super computer for the hospital, tiny baby unit, the City Lights From the Sky Walks to the University Hospital and the Moran Eye Center, The Board Room, The Nutrition Room and more.

Our midnight walk is a memory I will always treasure.  The quiet uneventful memory that leaves a lasting impression.


Alice hiding in the closet

Staying up late and being silly
Cousin Cooper came to visit....great time

Alice and Cooper

Cooper didn't want to go least didn't want to leave the car

Natalie's Echo, 2nd attempt which was successful in her room, we tried to make the room as dark as we could so the technician could get a good picture.

Echo, almost part.

Alice checking her own heart rate

The night view (I tried to zoom in..didn't work very well)

Monday, May 28, 2012

-Alice Joins Us at the Hospital--Happy Memorial Day

An interesting day, we made arrangements to have Alice admitted.  She has been running a low grade temperature, but mostly vomiting and diarrhea.  When the doctors came on rounds to see Natalie and heard about the symptoms of Alice they prepared a room for her too.  Natalie is moving rooms today, the two of them will be neighbors.  Natalie loves the rooms with a view of the valley, and even more she she loves the view of the Temple...her new room next Alice's will have the best view. 

We have been decorating the girls' rooms with paper balls and fish decals.  Alice made crowns and glasses for her's so cute.  Alice sleeps with her clothes off because she gets hot.  With all the hair on her back and everywhere, she has a permanent sweater.  It's so funny...she even has a swirl of hair on her back, I will post a picture of it.  It's all temporary, but in the meantime we are having fun with it.  The cyclosporine medication makes them grow hair all over.  Once they come off that med it will gradually fall out.

Still running plenty of tests on Natalie...wondering what might be going on with her.  She is more sick than Alice.  She is being a good sport, yet tired.


Just checking in

View from the rooms

Some of the decor we put up

Natalie and Dad

Sunday, May 27, 2012

Natalie's a Trooper

Today has not been much different than yesterday, they ran more tests.  They drew labs for Epstein Barr, and another virus.  She had more scans done on her tummy/pelvis and sinuses.  Natalie had to drink a large volume of orange fluid for the CT scan contrast.  That was a challenge.  It would have been hard for me.  She hated every minute of it, but did it anyway. 

We should hear more tomorrow regarding results. 

It seems as though she is experiencing severe tummy trouble, most likely due to gas and possibly a bacteria in her gut.  The fevers could be associated with an intestinal bacteria, but could also indicate other things.

Natalie was happy today to see the family.  Tyler brought the kids and they had fun.  Once Natalie's lunch was delivered everyone started to complain they were hungry so Tyler packed up the kids and headed home.  When everyone is here, it's like a time bomb--the rooms are a little too small for our crowd.  Amber came with to visit and helped Tyler with the kids.  Grandpa and Grandmother Fish came to visit later.

She fell asleep early evening and has been asleep since...she is exhausted, and needs some rest after last night. 

CT Scan

Taking a Break From Playing Headbandz to Order Breakfast

Everyone...testing the beds hydraulics


Saturday, May 26, 2012

Come Fly the Friendly Skies.

We had high hopes of Natalie improving today, however she is still very uncomfortable due to stomach pains. Her fevers continue to persist and puzzle the doctors. They will try CT scan of her stomach tomorrow morning. For now it is trying to make her as comfortable as we possibly can. Aunt Amberly was planing to stay the night with her, but the pain was such that Natalie pleaded for Lisy to return and stay with her. Lisy left around 10pm tonight back to the hospital to be with her. I did meds for Alice and tucked the kids in bed. Alice is feeling better now as we had a 24 hr. virus hit both she and Evie yesterday.  Wonderful to see that Alice's new immune system preformed well.
It was a tougher day, however I was able to get out and run with some music in my ears for a bit.  Running is a great mental escape for me, and today I listened to Rhapsody In Blue by George Gershwin. So, for fifteen minutes my life was one big United Airlines commercial. "....Come fly the friendly skies." I really did enjoy those commercials.


Friday, May 25, 2012

New Developments--Minimal

I will make this quick, I am very tired.  Last night I mentioned how the two little girls went to bed so nicely, well I spoke too soon, they woke shortly after.  Evie spent most the night awake, fussy and throwing up.  Poor thing...I couldn't do anything to calm her other than rock her standing up while singing and stroking her hair.  She finally feel asleep by 3:00 a.m.  Shortly thereafter Alice woke, so I slept with her in her room until she went back to sleep.  When morning arrived I called Tyler to check on he and Natalie, and apparently their night wasn't much better.  We teased each other that we were going to paper rock scissor for the easier shift, home or the hospital. 

The good news is that both locations have improved.

 Evie started feeling better this evening.  Alice began throwing up, yet played happily all day...maybe after what she has been through a little sickness isn't much of anything to her. 
Natalie's status has seemed to ease up a bit, yet no real answers.  Still spiking a fever, feeling sick, and having major tummy trouble.  She had a CT scan on her lungs.  The doctors have been treating her for pneumonia, assuming she has it.  The scan looked great....phew!!  Her lungs are fine, which is a big relief.  Pneumonia can be ugly, especially when Natalie gets it.  While in CT scan I tried to coax the technician into doing a scan on her lower abdomen.  Didn't work, because she needed to have dye in her body prior to the scan.  Should have thought of it sooner.  The doctors will most likely write for an abdominal scan later.  I just know how the program goes....I'm always trying to cut to the chase.

Her pain level has improved as the day progressed.  She passed plenty of gas and had another bowel movement.  The only worry right now is the source of the fevers.  We hope what might seem minimal does not surface as something bigger.

I have been rubbing her tummy, which seems to help...maybe a few foot rubs will do the trick. ;)

More news tomorrow.

Grandma got the girls matching shirts and coloring books.

Grandma Schellenberg, Heidi, Savannah, and Lily came to visit today.  What a fun surprise, Natalie doesn't get to see the Bunkers very often because they live so far away.


I have so many pictures and videos I want to include but keep running out of time and often I don't have the right cords and such with me.  I have a lot to catch up with.

Thursday, May 24, 2012

Still Wondering What Natalie Might Have

Today didn't bring much for news.  Natalie has been uncomfortable most of the day according to Tyler.  She had a chest x-ray, which didn't indicate much...although she has the symptoms of pneumonia.  Sometimes the x-rays lag behind real time.  Hopefully this isn't something that has to get worse before it gets better.

We asked to run a urine was negative.  The nasal swab did not indicate anything respiratory.  The blood cultures will take another day or so to grow anything if in fact there is something growing.

She has continued to spike a fever throughout the day.  It's hard when you know something isn't quite right, but aren't able to pin point it immediately.  Not always is the source of the fever discovered.

I will be heading up in the morning to trade Tyler places.  She has plans to Skype with her school class in the morning.  Something fun to look forward too.  She mailed her teacher a letter last week asking to Skype, she said she missed her friends and wished to go back to school.  Her class sent some darling cards of love and encouragement a couple weeks ago.  It was awesome.

I noticed on Sunday when we sat outside watching the solar eclipse Natalie was watching another girl in the neighborhood her same age hoping she would make conversation with her.  It was cute, and I can't wait for her to be with lots of other kids again.

Today has been strange for me, I haven't been able to accomplish much as my mind has been on Natalie and her situation.  I did fly a kite with Alice and Evie.  They laughed and laughed.  Alice kept saying, "kite you can do can do it!"  The wind was hard to come by today....unlike other days.  But we had just enough to have a great time.  Mostly I was holding Alice in my arms running while she held the kite string.  She was too tired to run herself, but after 30 minutes I was too tired to stand.  Alice, Evie, and myself afterward were exhausted.  When we came in the house they fussed and became clingy to me, so I fed them a yummy soup, changed their diapers and put them in bed.  They fell asleep instantly. 

Phew, a moment to think, I plopped down on the couch and reviewed my day, that so quickly passed.  Yes, this time in our life is exhausting but I will always treasure it.  I love holding two little girls in my arms at the same time, Alice and Evie....two babies, as Alice would say.  It's like I have two little shadows, everywhere I go they follow and if I change directions they turn around and continue to follow...and on and on.  If I am in the same room as them, they are happy, the very moment I leave they notice and follow after me.  Who needs GPS just get a couple little ones, they are excellent at keeping track of one's location. 

We have had so much help during this time...I could not list all the ways we have received help, there are too many.  Thank you to all of you who have helped carry our load.  It has made all the difference.


Wednesday, May 23, 2012

Natalie Has a Fever-Back to the Hospital

Today Natalie complained more about her discomforts.  She felt warm to me so I took her temperature and it was 101.3 or 38.2 .  FEVER!!  I never like to look at the thermometer after it beeps out of worry that it might read high.  She complains that her back is hurting her and it is hard to breath sometimes.   Her constipation has improved some.  We are not sure what it might be this time.

Tyler took Natalie to the hospital while I am home keeping the other children organized.  Amber stopped by to drop something off, and I was glad she did because I needed an extra hand.  She is always so helpful.

Hopefully tomorrow we will have more information regarding Natalie's condition.


Monday, May 21, 2012

Clinic, Day 152 for Natalie, Day 125 for Alice

Catch-up!  I have set the date on this post for Monday the 21st so I can keep my records straight.  It was a long day in clinic.  Thank you to Dad Fish for taking the first shift in babysitting and Mom Schellenberg for taking the afternoon shift.  Some days are just longer than others. 

Alice received IVIG...which takes a good part of the day to infuse.  With the IVIG she will be protected from more sickness.  Natalie did not require IVIG, instead she spent the afternoon seeing the ENT.  She will be having her ear tubes removed.  Once the ear drum is completely healed she will have one final hearing test.  It will be nice to have a better picture of what her situation might be after the tubes are removed, allowing a better analysis for hearing aids and such.

Counts were well enough for both girls: Natalie's ANC 1700 and Alice's ANC 800.  Alice's chimerism is still pending.  We are anxious to know which direction it is going.

Natalie is still having some trouble with constipation.  It's been hard for her system to find a rhythm since her last hospital stay with the Broviac infection.

Today I was playing dolls with Alice and could hardly keep myself awake, I somehow snoozed off without realizing it...moments later I heard Alice asking me something.  I was half awake and vaguely heard her say, "Do you want a booger?"   I said yes just to answer her, but I had not registered what she said.  The next thing I knew she had put her booger in my mouth.  Needless to say I was wide awake from then on, and will be more careful regarding what I say 'Yes' to.

Thanks again for the many prayers and encouragement in our behalf.


Friday, May 18, 2012

Ice Cream and My Little Brother

I wanted to write this cute little story of Matthew and Blair in my journal, then I remembered that I haven't actually written in my journal for months because it's all on this blog, so instead I am posting it in the blog.  This journal/blog involves the whole family anyway.

Some days ago I asked Matthew if he could help me deliver some ice cream as a thank you to a sweet family down the way.  I knew that he knew the way to their home and was confident that he would complete the task.  I was anxious to give him this responsibility as he was wiling and ready to follow through.  He put the ice cream in a bag and secured the bag over his scooter handle....ready to go!
 As he was preparing to leave I asked if he would be able to take Blair along.  He agreed so,  I sat him down near his bike and gave him three very clear and important instructions.

#1 No matter what, DO NOT let Blair leave your close proximity. (I explained it in a way he understood)
#2 Never cross any streets without Blair by your side.
#3 Don't let the ice cream melt...if the family is not home hurry back so we can put the ice cream back into our freezer.

Without telling Matthew I gave him these instructions in a particular order, most important to least important.

Without them knowing I would follow them in the car.

Off they went.  Matthew on his scooter and Blair on his trike.  I noticed on the first street crossing that Matthew was far ahead of Blair.  Already, rule #1 and rule #2 broken.  I was very aware of how excited Matthew was to deliver this ice cream...he could hardly go fast enough.  I watched as Blair tried to keep up.   I decided to go around the block and watch them from the other end.  By the time I turned the corner, I saw Matthew heading home in a hurry, and Blair was nowhere near him.  Matthew had already been to the house.  No one was home.  He knew he couldn't leave the ice cream on the porch to melt.  He also knew he needed to head home quickly to replace it to the freezer.  Once Matthew passed on the sidewalk I drove to the family's house where I hoped to find Blair.  He was there taking his sweet time.  I asked Blair if he wanted a ride, he did, so I put his bike in the car and waited a minute to see if Matthew had plans to return.  Sure enough, Matthew came zipping around the corner and ran to the house looking for Blair.  He seemed really nervous and scared.  I got out of the car and asked Matthew if he knew where his brother was.  He looked up at me, then covered his face with his hands and began to cry.

I told him Blair was safe and in the car, a sigh of relief fell over him instantly.  I asked if he wanted a ride as well.  As we loaded his scooter, I asked Matthew if he remembered the three instructions I gave him before he left on his errand.  He said he remembered them, but was worried the ice cream would melt so in his mind he made an alternative plan.  He thought if he could go really fast he would be able to salvage the ice cream and bring his brother home safely.

He learned a very important lesson that day.  I didn't have to do much explaining.  However, I did carefully teach him that some rules are important and others are vital.  I told him to never let the less important things keep us from doing what is most important.  Ice cream is just ice cream and it can be replaced, Blair is most important.

Later we delivered the ice cream, and all was well.

Often I reflect on that example of Matthew and Blair, It's so easy to get carried away doing things that need to be done and do seem important, but in reality WHAT IS IMPORTANT?  Many things are obviously important, preparing food, washing clothes, cleaning...the needs physically, however, the moments that are most important are the ones that come and go with subtle introduction.  The simple things that are observed by little eyes watching every motion and tone, our habits, how we spend our time, our reactions to an action, our words spoken one to another--perhaps are the most important and influential.


Monday, May 14, 2012

Day 145-Natalie, Day 118-Alice

Today in clinic we learned that Natalie's stomach trouble, nausea trouble and diminished appetite stems from a source, in which can be managed much easier than what we hoped it wasn't (GVH). Her troubles have been validated by an x-ray of her abdomen. She is terribly constipated. This seems to always happen after hospital stays, her symptoms began after her previous week long stay. Lying in bed all day and eating hospital food is a bad combination. We should have known it was such, however, we have been so concerned with graft vs. host, which causes problems in the gut, that we overlooked what was happening.

Upon arriving home from the hospital we played a cool game with the least we made it sound that way. We passed a ball around and said something we like about the person who possessed the ball, the reward for saying something unique was an individually wrapped prune. Natalie won three of them, she ate them all. If we continue playing this game the rest of the story is history...

Also, I rubbed her tummy clock-wise with some essential oils to help the process along, some hours later she had to potty. Hopefully we can keep it.

Her labs were great and the doctors are super pleased with her progress. Counts are good. IgG levels are good, her ANC was 2100. Her red blood cells (Hemoglobin) stayed at 10, normal is 11.5-15.5. A little low, but heading in the right direction. Platelets 94, a little low. Normal is 150-400.

Natalie is getting closer to normal. Once her health is stable then the real fun begins. We have some other things to work on...side effect stuff, and there is plenty of that. For example, she is terrified of taking baths, she worries that her line will get wet, that water will get in her ears, and she hates to be cold even for a second. The list is long, but hopefully as time passes she will overcome the anxieties that have developed over time.

We are so proud of her everyday, she really is amazing. I continue to be reminded of how many uncomfortable things she and Alice endure. Yesterday I was drawing the girls meds and a drop of the cyclosporine landed on my finger, I got curious to what it tastes like, so I tried it. WOW, it was horrific!! A tiny drop burned my mouth for at least an hour plus. I couldn't believe it. We mix it into chocolate milk to make it more mild, but I never realized how bad it was.

Alice is great. Her labs were the highest they have been yet without the assistance of any bone marrow stimulants. Her ANC was 1100. We will find out by the end of the week or Monday what her chimerism was. In two weeks she will be off the steroid completely. This is a big step and will shed some light on what is really happening regarding her engraftment analysis.

Well, that is the news from clinic. We are happy to learn that it wasn't as bad as we thought. Lately I have slacked a little with the blog. I have several posts in my drafts that are halfway done. Tyler and I have been trying to go to bed earlier so we can stay healthy, which means my time to get things done is limited. I suppose I need to be more efficient. I want to invent a clock that can slow time down, because I have a bazillion things I want to do, but never seem to accomplish them. Does that sound familiar to anyone? Time is our friend not our enemy...right?

I can account for at least 2 hours of my day spent under the stairs in the play closet with Alice and Evie. We had a very exciting tea party that lasted a long time. I even caught some on video,  it's actually pretty funny.


Natalie and Alice waiting outside the hospital while Mom is refilling all the medications at the pharmacy.

Saturday, May 12, 2012

Alice's Chimerism Dropping

Yesterday Dr. McMannus called Tyler and gave him good news and bad news. The red blood cell count (CBC) that was drawn by the home care nurse on Thursday was favorable for Natalie. Her hemoglobin went up to a 10 from an 8. She is no longer threatening another blood transfusion at this point. Tyler and I were relieved, because we thought it was continuing downward. The tests indicating what might be causing the anemia are reported. To the doctors best knowledge her anemia is not related to her switching to Blair's blood type A+, although, possibly a result of viral suppression. She has not vomited for a day and a half...hooray. She is beginning to have more of an appetite again.

Alice's labs were much less favorable. Her Chimerism (engraftment analysis) taken this past Monday in clinic showed her level to be approx. 84%. Much lower. This coming Monday in clinic another test will be taken. Again, Alice is a wild card, she is responding to certain tactics differently than expected. The plan is to tapper her steroid more than the scheduled plan and also begin tapering her cyclosporine (anti-rejection) in hopes that it will help her levels rise. If her chimerism continues to drop, it is possible she could loose the graft. Tyler and I choose not to think that could happen, we hope she is able to manage good levels as it is a delicate balance. If her cyclosporine levels are disrupted too much she becomes more of a candidate of graft vs. host disease. It's a fine line between two troubles.

Tyler and I changed Alice's dressing tonight. She was such a good sport. Before hand I showed her a new prize to help encourage her, and it work wonderfully. She was cooperative and very thankful to have the reward.

As a family we had a fun filled day of activities with punching balloons, balloon rockets, playing the game Hedbanz, and painting with glow in the dark paint.

The following message is from Alice, she really wanted to help me type.

ujjjjjjjjjjjjj lijrlijiujiooooo ujioutgthtvohchciuu3yoyyyoyooyjhwwwwwwwwwwwwwwwy ivkvitik[p0o-co-=0`=-0osp]qwppo3pop22\][21
i3i0-ieeeiowkopwiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiih yug ry yugiugyhgyighyty giy yyy8 8ytgjihuuuuuuuuuuuuuuuuuu98yy;3u999r9i9998i4i9ri u9ue'o[irkoipoi poi;i oi uu0i9030v90889344-48-8489849-222222222220o44=430399999939999999020o2=


yukyyry6re6eyswwtwytwtegffn,4rur4trfrtettgw jjywt3jytt4y4ttttjjjjjjjjjjkuuuuuetrttttter3re2dQDRT4E4GDGBY44FDWER ttttewqqqttttttttteeeeeeeethhhhzssraAe3rrrqarqgtrAr

Tuesday, May 8, 2012

Clinic...Day 138 Natalie, Day 111 Alice

Today was Alice's official 100 day consult with the doctor (Dr. McMannus).  Alice's labs were better.  Her ANC was 800.  Her chimerisim  dropped to 94% from about 96%.  This is something that will be watched closely.  Another chimerisim  test will be taken next week.  Alice's other labs indicated that her new marrow is responding favorably.  Because of the incredible amount of mal-functioning antibodies that possessed her body prior to chemo and transplant, her recovery is slow in the coming, but thankfully heading in the right direction.  It just takes a lot of time for her old antibodies that were created before chemo to die off.  Patience is the process, I suppose.

Natalie's ANC was good.  However, her red cells are down a little.  Her hemoglobin was 8.  Anything less she will be transfused.  Possibilities for a drop in her red cell count include; minimal viral suppression, her body just trying to catch up after going through so much, and/or her body changing over to a new blood type.  She is trying to type A+, where she was O+ before transplant.  This process takes several months and sometimes doesn't actually ever switch.  Regardless, she will always receive O blood when infused.  We are going to watch her closely the next few days.  If she becomes more pale or tired we will take her in for more blood.  Being anemic has made her body more cold.  She snuggles up to me all day to get warm.  I have been warming the rice bags Laura Burton made the girls to keep her warm as well.  Her friend Lizzie Simmons made her a little turtle rice bag that has been perfect to warm her infusions as they go into her arm.  We are so spoiled to have such awesome friends and family who have covered all our needs...even the smallest details.

It's been a long day but a good one!


Alice loves to toss a coin into the water fountains...she asks to throw something in every time we pass by...I finally decided to video it so I we would remember it.

Sunday, May 6, 2012


It has been a busy week.  We haven't been able to give an update partly because our time has been limited due to the added infusions of Natalie's recent hospital stay.  The new medications have kept us up a lot at night, as they are given around the clock.  Today she finished the course of IV antibiotics, we hope her body is on the mend entirely.  She is still weak...we will watch her closely.

Alice is doing well and still keeps us laughing.  She doesn't allow anyone to be idle around here.  Always on the go and rarely naps.

Tomorrow is clinic again.  Hoping for good news on counts.

We just posted pictures of our nurses and doctors...we are glad to have pictures of them for memories, for years to come.


Doctor Tribute and Nurse Practitioners

Our family is very thankful for the Doctors who have helped us reach this point in our lives with the girls.  It has not been easy or simple.  We needed the best of the best, and that is what you will find at Primary Children's Medical Center...the Best!

Hematology Team

Lisy, Alice, Dr. Yaish, and Natalie

Dr. Hassan Yaish was the first doctor we met at PCMC in July 2007, only four years after our medical journey began with Natalie.  He is an amazing Hematologist and has been dear to our hearts as he has saved Natalie's life many times.  He is very important to the department and in high demand.  He is an expert with the microscope.  The one who replaces him will have large shoes to fill.  He has been trying to retire for many years, however, has not been successful due to people like us and others who begged that he stick around longer.  We teased him that he couldn't retire until Natalie and Alice were "all better".  He knows how much we appreciate him.

                                                                   Dr. Yaish with Natalie

We have seen many doctors in the Hematology Oncology clinic, they are all wonderful, we just don't have pictures of the others.

Dr. Yaish's nurse practitioner Renae Marlett.  She has been wonderful and incredibly helpful, very involved, and well appreciated.  Renae does not miss a detail...we love that about her.  She is a great listener.

Penny (nurse), Lori (nurse) and Susan (hematology clinic)
Dr. Yaish's crew

Bone Marrow Team

Dr. Michael Pulsipher, and Nurse Practitioner Hilary Isenhour

Dr. Pulsipher was the doctor who conducted our first bone marrow consultation, he provided helpful information as we began the decision process of the girls treatment plan.  He is also helping us train our minds that hand sanitizer will not always be a part of our daily life.  We are having a hard time believing him... ;)  However, he is very knowledgeable and experienced, so we will trust him.  
Hilary is wonderful, she does a lot of work and very willing to address all our needs, even at 3:00 am.  She is patient and good at what she does. 

Dr. Michael Boyer

Dr. Boyer we met later into the process as we began the pre-testing for transplant.  He is great at keeping things calm and relaxed.  He enjoys the girls and thinks Natalie is funny.  As crusty as Natalie can be around doctors, we appreciate Dr. Boyer finding humor in her.  

Student Doctor, Dr. Meghann McManus, and Nurse Practitioner Brenda Mueggenborg

Stefanie and Shaunda (Bone Marrow Nurse Coordinators)

Dr. McManus is very sweet and explains things so well.  She too was there at the very beginning.  She was wonderful in helping us understand all that bone marrow transplant entails.  She clarified many questions we had as we began this journey.  She has been a great sport to work with the media.  
Brenda is also very helpful...she like Hilary take care of all our direct needs.  They do a lot of work and spend late nights making sure the girls are well.  She is very understanding and accommodating.

Immunology Team

Dr. Karin Chen and Dr. John Bohnsack

We first met Dr. Bohnsack when Natalie was in the PICU on life support in Nov. 2009 with the H1N1 virus.  We did not request to see him, yet he found we understand it.  We however, were anxious to see an immunologist.  He was fascinated with Natalie's medical records.  He is a brilliant man, and looks for ways to solve mysteries.  We visited with him in length, and realized at that time that we needed to work with him in order to find the roots of Natalie's medical mystery.  
Alice actually became a patient of his before Natalie.  Alice provided question for genetic testing as she developed similar problems as Natalie.  It was a year later that we tested Alice for SCID...which is where Dr. Chen comes in.  She is involved in gene sequencing and suggested to test for a RAG deficiency on the DNA.  Dr. Chen is very knowledgeable in the subject, we are glad she became part of our journey.

Infectious Disease

Dr. Ampofo and Resident Dana

Dr. Ampofo has played a vital role in Natalie's well being.  In July 2011, Natalie became very ill and was transferred to the PICU  with severe pneumonia.  The antibiotics that were given during that time did not help.  The doctors were moments away from intubating her when the lab called and reported that she tested positive for Legionaries disease.  This is a rare pneumonia that broke out in an army camp many years ago.  The doctors at Primary Children's had never seen a child with this disease...nor had seen a case of it in many years.  It was doctor Ampofo who was thinking outside the box and sent for this simple test...which is actually a urine test.  The results came in the nick of time.  Once they administered the proper antibiotics, Natalie turned a corner and began to improve dramatically.  We are thankful for Dr. Ampofo and other doctors who have made a difference.

Nurse/Staff Tribute

ICS and Hematology/Oncology Staff at PCMC.

Tyler and I wanted to make a post just for the wonderful Nurses, Techs, and Staff at PCMC.
The pictures below are only some of the amazing people we have been able to surround ourselves with during our time at Primary Children's.  We have been diligently gathering pictures of all the people who have taken part in our journey, however, we know we haven't been able to get even half of those who should be a part of this post...we've decided to add to it as we gather more pictures.  We discovered after gathering several pictures that many pictures were erased by one of the children as they grab hold of our we will continue to add to this.  We feel like Natalie and Alice will appreciate having names to faces when they are older.

All of the wonderful people below are dear to us and have helped make this journey easier as they have provided comfort, smiles, and laughs during this time of hardship.  They have become great friends to us, we  love all the nurses and staff that we have come to know over the last several years.  Some nurses we knew as they began working at PCMC fresh out of school.  Now they are well seasoned nurses.  Where ever we go in the hospital we run into people we have met over the years.  Resident doctors who are through fellowship and have become attending doctors, techs who have finished school and are nurses; it has been fun to watch the progression.  It is fascinating as well for them to watch the progression of Natalie and Alice over the years.

Alice, Loa and Janet

Trisha and Jordan

Rick and Amber

Mitch and Erick

Ben and Dave

Ben, Alice and Dave

Irish, Ben in the back, and Alice

Janet and Sherrie

Mitch and Natalie

Sarah and Natalie

                                                                  Annie and Marie

Andi and Soraya

Trisha, Jen, and Liz

Bess, Noelle, and Kathryn

Jamie and Dave

                                                                       Alice and Sara  

Amber and Erika (Lisy's twin ;))

Rachelle (Hemoc clinic child life), Natalie, and Tracy

Student nurse, Gina, and Kaitlyn

Natalie, Olivia (in back), and Irish

Karina and Becca


(great nurse to have during a code blue)
Amy and Alice


Sally, Alice and Breck

Sally, Alice and Josh


Alena (dietitian)

Alice, Wendy and Sara

Lisy and Emily

Josh, Tommy and Kira

Alice and Courtney

Courtney and Alice

Alice and Ashley

Lisy and Katie (with the foundation)

Sandi and Pam (clinic staff)

Jessica, Stephanie, and Kristin (clinic)

Kathy and Tracey


                                                     Gabby, Nicole, Sara, and Camille

Emily and Alice (best of friends)

Paul (Hemo/Onc. child psychologist) and Tyler

Tomoko and Kiara