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.

Wednesday, February 29, 2012


Before I get to The Big News, here is the update. Alice's ANC came up to 1000. She is getting stronger. Her rash looks better. It is confirmed to be Graft vs. Host. Because it occurred very early, it shouldn't be a problem. The rash is being well managed. It will just take a little time for all her cells to learn how to play nicely together, when they learn to like each other the graft vs. host should disappear.

Natalie came to clinic today and visited with Alice. The two had a blast together. Natalie's numbers are wonderful. The doctors decided that she will no longer need her a.m. dose of the anti-viral infusion. She also will no longer need her anti-fungal medication. One more medication off the list, this is good! Hooray Natalie!

The Big Good News is that Evie is all clear, she does not have Leaky SCID! What a relief. We had assumed so, being that she has been so healthy. However, a couple months ago there was some miss communication between doctors and departments, and we were under the impression that she had the disease. About three days had past until things were clarified between the meantime Tyler and I were trying to prepare ourselves for a third transplant. I can't lie, that was a really hard couple days for us. We kept it quiet to ensure that the information we received was valid. When we discovered that the results actually had not returned it was a huge sigh of relief, even though we still anticipated the final verdict.

Little Evie Karen...excited for the big news. If only she really knew how big it is.

Tuesday, February 28, 2012

Trying to Walk

Alice continues to laugh and smile all day. I don't know what happened during last week's events in the PICU, but she is truly content and happy. She is so gentle and peaceful. She constantly smiles at me and hugs me. It's almost like she knows a secret that I don't. Honestly, I have said this already but I just can't hug and kiss her enough.

Most of her medications have switched to oral. So far it is working. She took a small walk in the hallway and worked so hard to walk with help.

I intended to post last night, (although I dated this post for yesterday's date) however, Alice and I ran out of time--finally by 3:00 a.m. we took another walk down the quiet hallways. She tired just enough to fall asleep...hooray!

Her ANC was 800. Still good. The doctors suspect now that it has dipped a little, she will begin the upward trend soon. Alice might be coming home as soon as Friday. Wow, we are so excited.

Amberly visited last night, brought dinner, and we chatted until past 11:00 p.m. It was a lot of fun. Alice got a new toy from Amberly, and woke bright and early to play with it. Maybe we can order a good nap today. :) Amber you are the best, thanks for the visit. It's always a good time when you are around.

Alice was having a tea party over Skype

A constant smile

More Laughs...she has everyone smiling around here.

Good walking Alice

Monday, February 27, 2012

The Natalie & Alice Fish Story

This was the video presented at the "Share The Love" event on Saturday night. This is the story of Natalie and Alice Fish

Day 41 Alice-Day 68 Natalie

What a great day it has been for Alice. She and I have played, giggled, and even took a walk down the hall. Because her counts are high, she was able to slip on a mask and venture out into the hallway.

Today we have seen improvement in her blood pressure, she has eaten better, and her stomach has shown signs of churning. Yeah Alice, you are getting better. Of course she was willing to wear clothes today because that was the stipulation for her being able to go into the hallway.

They stopped the GCSF so her counts will come down a little, but her ANC is still good at 1000. At this point everyday she will make big improvements.

Between keeping her little feet from going under the buggie while I pushed it and having physical therapy come today she is pooped. She cannot yet stand on her own, but she is willing to try and each day she will get stronger.

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Her exciting hallway adventure

Alice has been laughing a lot more lately...I'm not sure exactly what was so funny this time but I grabed my camera just in time to capture some of it. And she does not mind if her oxygen tube is falling out.

Sunday, February 26, 2012

Day Plus 40

Thank you again to all who were a part of last night's event. We have heard from so many about how wonderful and amazing it was. Words cannot express our gratitude. What a special day it was for us. THANK YOU!!

Tyler and I were trading places last night so we brought the other children in to visit with Alice for a moment. She laughed more in that short time than she has in a very long time. It was so cute to see her so happy to be with her brothers and sisters. She was sad to see them leave, but it was okay because Mom was staying.

Honestly, I am amazed at how many times Alice has smiled at me in the past two days. It's there, it's in her eyes...she is happy and I think she is feeling like things are beginning to wrap up. I feel like I can't hug her enough. I love being in her presence, it is a very peaceful and lovely feeling.

I know as time passes and our journey through this time comes to a close we will miss many things about it. Everything we use and look at have memories of someone or something that helped us through. For example, I will never be able to drink a Kerns nectar drink again without thinking of my sweet Aunt and Uncle who have faithfully kept our little food supply here at the hospital stocked. We will never forget the help and love that we have received. I know we have a long road still, but at least it will be filled with constant reminders of many who have shared their love with us.

Tyler and I felt like our buckets were empty when we started this journey last September, but they are overflowing now with strength and courage. Truly, it's hard to express how we feel through words.

Alice is doing good, more of her medications have been switched to oral. Her little stomach is trying to adjust. Sometimes it's too much, but she will get there. She has developed a skin rash, which is common and could be related to the cyclosporine she is receiving. There is a possibility it is a sign of graft vs. host disease. This would be the acute form and shouldn't be much of an issue. Hopefully if it is GVHD it will be temporary and should resolve. The fact that she received unrelated marrow, GVHD is a possibility.

Her blood pressure has been slightly elevated, so they increased her blood pressure medicine. This is also normal...just needs to be closely watched. And her ANC was 1700 today. Staying high!!! We are so happy!

Saturday, February 25, 2012

ANC 1900 & Share The Love

Alice's room seemed so lonely while she was in the PICU

Alice's numbers continue to increase. Her ANC was at 1900 this morning. The doctors have taken her off all major IV's and switched her to oral meds. This is a big step in the process to get her home. We have been told the goal is to do so possibly by mid week. Fingers crossed. She is still a little slow and melancholy, but has flashes of her old self. We are becoming more and more encouraged these past 24 hrs. I reflected today on how far she has come within the last 48 hrs. Our emotions have been all over the map, from the low side and to the very highest at the present. We are so grateful to the prayers offered on her behalf.

Lisy and I also wanted to thank everyone involved with the "Share the Love" event. We have gotten bits and pieces of info during the event and assume that it went well. We wish that we could have attended and greeted all of you ourselves. How we desire the ability to express our deep appreciation for the love shown to us. We know that there has been countless hours of labor from so many people. Tonight I would have to restrain from getting emotional each time I received a picture text of the happenings at the event. Someone shot me a text to tell me that Natalie's turtle art was bought, I melted inside. I replied to Natalie that she was officially an artist since someone had purchased a piece of her work. She didn't seem to comprehend it, as she shot back a puzzled look. I was a little emotional and thought I wouldn't get through explaining it without my voice cracking, so I said, "I'll explain it to you later." Thank you to you all for the labor of love on our children's behalf. We love you and wish that when you see us in the future, no matter what part of this event you were involved with, please tell us. For we wish to thank you personally from the warmest places in our hearts.

Tyler & Lisy

Returning from the PICU

Looking for Natalie accross the hall

Thank You--Alpine Blood Drive!

I had spoke with Jessica my sister-in-law the other day, she was telling me about the Alpine blood drive. We feel so blessed and loved by many. If only we could thank everyone individually. The blood drive was a great success. Jessica said the only thing that could have been better was the fact that the Red Cross wasn't prepared for the amount of people that came. The coordinator from Red Cross told Jessica that they usually only plan on 30% of the people who sign up to show. Next time they better prepare for 100% :) This goes for all the blood drives that have been in Natalie and Alice's honor!

Thank You Everyone...many many lives will be blessed, including our sweet girls.

Love to all.


Friday, February 24, 2012

GOOD NEWS--Engrafted!!

Today is Day plus 38 for Alice, her ANC today was 1400. WOW and HOORAY!! This is a HUGE leap. She has officially engrafted. Her ANC of 600 yesterday must have been accurate.

We have waited so long for this day, and are thankful for the many prayers that have brought us to this point. Alice is more and more herself as time passes.

I felt it necessary to have Natalie and Matthew interact with her as she is healing from the brain trauma. She was very happy to see them. Natalie made her a darling card, showed her some home videos she had made on her iPad. She thought they were hilarious and so did Alice. Matthew is great medicine for anyone, especially Alice. She was asking for him earlier in the day.

It was hard for Alice to say good-bye when Natalie and Matthew had to leave.

Blair stayed home to keep Evie company, he was getting tired. However, I think he had a hidden agenda to rescure the Princess from King Bowser's castle.

Thanks again Everyone,


A nice little bath to help with diaper rash, and Kathy the nurse.

It must be exhausting making more than double your white cells over night.

Thursday, February 23, 2012

Back in ICS...feels like home!

We have reached the end of the day and things have calmed down. What a whirlwind it has been. I can't remember if it should be day or night, sometimes this happens in the PICU. Alice's room in the PICU was between two rooms where Natalie was when she had Swine Flu and another time with Legionaries Disease. Being there naturally brought back some hard memories.

The EEG reported normal. The neurology team was pleased with the results, yet perplexed as to what happened. Between the PICU doctors, Bone Marrow doctors, and the Neurologists still remains a mystery as to what the initial cause was that led to Alice's seizures. The medications that are suspicious have been removed from her list. Her sugar levels are partially they have been watching them closely throughout the entire transplant process. Her glucose levels are stable now. She is not diabetic, nor does that mean she will be. It was just a random response to many factors at the time.

When Alice was being brought back to her original room she was aware of where she was. Upon arriving to her room she recognized Natalie's old room. She continued to say, "want Natalie's room" pointing in the direction across the hall. She repeated this six dozen times at least.

Alice's mental status is returning more each hour. This evening she was able to hold her head up by herself. She drank apple juice, and kept some of it down. Her eyes are still wondering but is able to focus enough to recognize and identify things. It's very comforting to see hourly progress.

We are thankful for the nurse Tabitha who handled the situation so well when Alice was coded. Tabitha was so responsive and acted quickly.

Alice received more blood today.

We are blessed to have so many people praying and fasting for her. She has made major improvements and we are certain that prayers are being answered.

When I came home from the hospital this evening, my house was clean, my laundry was done, my children were well cared for and a yummy dinner was delivered by my sweet neighbor. WOW! Thank you, Thank you!

Someone once said that two things can happen during hard times--they can make you or brake you. Because of so many others it would be impossible to allow the later to happen.

Before putting the children to bed I gathered them around me and explained that Alice is getting better. We sat and talked about Alice, about all the funny things she does. Each shared something they love about her. Within moments we were giggling and laughing. Oh, how we miss her at home.

I told them to remember all the blessings we have received in the past few days and during family prayer Matthew said, "Heavenly Father thanks for taking good care of Alice and thanks for everybody who fasts and prays for Alice." I know he really meant it. He told me about a movie he saw on The Friend website today. He said, "it made my tears come". I watched it and loved it. I feel like we are that little boy receiving such a beautiful red coat from all who know and even don't know us through your prayers.

Here is the address to this sweet story Matthew was telling me.

Natalie also reminded me of a story she watched in Primary one Sunday of two boys who helped a man in need. It's called "Silver Dollars in the Boots". It's easy to find through google or youtube.

Thank you!


The EEG testing was a little tricky because she was so restless, it required two people to hold her still, while placing the leads.

This head bandage looks worse than it is. It's just to hold the leads in place during the testing. The test takes an hour or two so they make sure it's secure.

PICU update

Alice has improved greatly over the past 32 hours. Her status has stabilized enough she may return to the ICS today.

The MRI came back normal, the CT scan was normal. We are so happy to hear that. She will have a EEG done soon. Alice has lost the strength to hold her head up, but the doctors feel that will improve over time.

She is communicating better, and now that the effects of the Ativan have worn off we can see a better picture of what her current status is.

Alice couldn't communicate normally after her seizure, but just a couple hours ago she said some things that made me feel so happy and relieved. She said, "Mom, scratch my back", "Mom, rub my feet", and "Mom bite my muffin!" Phew!!

The other day she ordered a muffin from the cafeteria. I tried to get her to eat it, she wouldn't and didn't want it so I just popped it into my mouth not even thinking much of it. She didn't like that--she told everyone for the next two days..."Mom bite my muffin!" You can imagine how I felt when she told the PICU nurse today that I bit her muffin, I was so glad to hear that she was coming back to herself and remembered something.

Alice vomited a lot recently, it soaked her favorite fishy blanket. She was hot when I tried to take it away to wash. She insisted on using it regardless it's condition.

A PICU doctor mentioned that she may have some delirium with all that is going on. We will take her to the window when we get back to our room and help her orientate herself again.

Yesterday her ANC was actually 400--big news, however, they don't know how accurate it was because of all that was going on with her body. Well today it was 600--even bigger news. We hope it is accurate.

Thanks to all who have been praying for her...she is doing MUCH better. I will post again tonight after the EEG comes back and we are back in our Valentine Wonderland room upstairs.

Wednesday, February 22, 2012

Code Blue--Emergency PICU

Last night after Tyler and I put the kids to bed, I stayed up for a minute to make a post. It was a busy day yesterday, much to record. I finished my post just before Evie woke. She wanted to eat and be cuddled. I was enjoying every second with her. I love holding my babies when everyone else is asleep, because it is our time to be together without any interruption.

By 2:00 a.m. I was just laying Evie down when I heard Tyler's phone ring. At that moment my heart dropped. I knew something was wrong...the ring tone was Tyler's dad's who was with Alice. I wanted to wish the call away, but my heart was telling me another story. Tyler woke in an instant and ran to his phone. All I heard was Tyler telling his dad that he was on his way. Then Grandpa called back and said you better bring Lisy too. I burst into tears and scrambled to find my shoes and glasses. We must have drove 90 mph the entire way, we made it to the hospital in 30 minutes-what normally takes 45 minutes on a good day. Thanks Michael for coming to watch the kids.

Upon arriving we learned that at about 1:45 a.m. Alice was given a code blue. When a code blue is signaled all emergency personal from around the hospital rush to the room. The room filled with eighteen people within 45 seconds, according to Grandpa Fish. Alice was rushed to the Pediatric Intensive Care Unit. She was taken to CT scan and MRI.

What Happened?
Alice was lying in bed when her body began to seize. Grandpa heard her wrestling around the bed and checked on her. He knew something was wrong; she was bleeding from her mouth.
He called for the nurse; she took one look at her and signaled the code blue. Tyler and I came straight to the PICU, upon arriving she was still having some seizures and was mentally gone. I can't really describe how she was, nor how I felt. I wanted to be angry, I wanted to cry, and I felt hopeless. I could hardly be in the room and see her this way. The intensity of the team caring for her in resolving the matter was what felt like to me an eternity of time.

Tyler and his dad gave her a priesthood blessing ad mist the was comforting and calming for me as well as Alice. I am so thankful for that special powerful feeling that accompanies the priesthood.

The doctors are still sorting out what happened. The possibilities are PRES (Posterior Reversible Encephalopathy Syndrome) caused by high blood pressure, or Encephalitis (viral infection of the brain), and I can't think of the third one off the top of my head...we didn't sleep last night and I can hardly gather my thoughts.

Oh I think the third option was a side effect or reaction to a drug called Foscarnet. She has been receiving it for sometime now, but she was currently receiving this medication when the trouble began. The doctors said that this drug can cause such an event---10% chance of this reaction.

She was given high doses of Ativan to control the seizures, in which the Ativan has caused her to hallucinate tremendously. Ahhh....I just want to make it all go away. We have already done this before with Natalie and it's the scariest thing a parent has to go through. There is hope that it can be resolved, depending on what it is. We are praying that she will not have any damages or any long term affects of the seizures.

Also Alice was beginning to fill many diapers with a high volume of urine, I could tell she was very thirsty. I asked the nurse to look into the high urine output. They checked her sugar level and found that it was 1250. That is off the charts high. They ordered her some insulin immediately. It spiked most likely because of the different meds that she is on. It also began to come down on it's own, and now is manageable. She is not a diabetic, nor does this mean she has diabetes.

Alice received platelets today and IVIG.

Oh Sweet Alice...I find comfort in knowing how many
people are praying for her. Thank you everybody!!


Tuesday, February 21, 2012

Alice Day 35--Rituximab (More Chemo)

Today Natalie had a clinic visit. She is very willing and happy to go these days because she really enjoys visiting Alice. It makes Alice's day when Natalie comes to see her. Natalie has maintained all her counts the same as last week. We are so proud of her cooperation with everything.

Alice's white count is 2000, and her ANC is 100. The doctors sent out for another Chimerism test. It will take a week to test. We hope her body's antibodies will be less.

Today was hard for us. We spoke with the doctors regarding the next step for Alice. They feel she needs Rituximab (another Chemotherapy idea). She still has traces (15%) of her old cells producing. This is what they reality the doctors as well as us are in uncharted territory. Alice has been a very unique situation and has responded somewhat unexpectedly to the initial preparatory regimen.

She received her first dose of Rituxan today. This is a drug they have given her in the past--several months ago, however, it did not seem to make any difference. She has some very stubborn marrow in her. We hope this time around it will be different considering she has far less to destroy than out last attempt.

This drug should not affect the new marrow from her donor. Rituxan is specifically targeted to eliminate B cells, in which the new marrow will not produce for another six months anyway.
B cells produce antibodies (viral fighters) and T cells produce lymphocytes (bacteria/infection fighters). We can supplement Alice's body with Immune globulin (Ig) which is a sterilized solution obtained from pooled human blood plasma, which contains the immunoglobulins (or antibodies) to protect against disease. We cannot supplement her with lymphocytes.

Thank you to everyone for donating blood, because immune globulin is a product of the blood, in which Alice desperately needs...Natalie too, of course as well as the red cells and platelets. One single infusion of Ig is a combination of thousands of donors.

I wanted to stay with Alice all day, when I had to leave I could see herself trying to hold back her emotions...her little bottom lip was quivering, she wouldn't tell me good-bye. When I was past the doorway and away from the window I couldn't hold back the tears. I quickly gathered myself and said, "Press Forward". That is what we do. We can only take one day at a time, and sometimes that is almost too much. I Skyped with her once I got home and she seemed happier, I felt much better. What really breaks my heart is when she tries to reach through the computer to play with us. I remember Natalie saying once, "Matthew I just want to give you a hug."

On my way home I sorted out many pharmacy issues and home care deliveries...I feel like I'm refilling a med everyday. I sometimes think about taking a break or a nap, but then something is left undone.
I'm so thankful for all the help we receive, this would be impossible without much help.


Monday, February 20, 2012

Day 34

Last night was tough for Alice. She didn't sleep well due to vomiting, and she was showing rashes on her arms, cheeks and bottom. We had to change her diaper a dozen times because of the severe diarrhea. She is so uncomfortable at times that I wonder how in the world she hasn't broken down mentally. I do my best to keep her comfortable, sometimes I think I fail. This morning's news wasn't as good as we had hoped. Her white cells jumped to 1400, but her ANC dropped back to 0.

The doctors are becoming more concerned and have increased her steroid dose in hopes to suppress the lingering anti-bodies until the new marrow takes over. If this does not work within the next few days, the doctors would like to reintroduce a drug called Rutuximab. Alice has had experience with this drug before, but she did not have any success with it. Moreover, Lisy and I have reservations from using it again. The doctors are saying that this time would be different due to her having different marrow. We are still apprehensive of its use on her. I'm not sure that we have much choice.

Good news--the past couple days Alice has done well on room air, while awake. She requires oxygen (nasal cannula) still at night and periodically throughout the day.

Alice played for a good portion of the day. She bowled, and had a good time with some building blocks. She also got a package of Backyardigans, which she loves to play with. She keeps them in her bed and will not let me put them away. She requests more often now that I sit beside her in bed to play instead of sitting in the rocking chair beside her. When she beckons me with her little hand and then pats the vacant spot beside her, I can't deny the request.

Tomorrow will be a better day. Tyler

Sunday, February 19, 2012

Day 33

Quick post--I ran out of time, so I'm making it short.

Alice's numbers today were still the same as yesterday. 1300 white count--100 ANC. They are going to double the steroid. It will take a few days before we see any changes.

She is having a lot of abdominal pain and diarrhea. Hopefully she will engraft soon so the healing process can speed up.


I Wish

My last post has a video of Alice dancing to this song. It's so cute because she loves it. Thanks for the link Jill.

Saturday, February 18, 2012

Improvement--Day 32 --Not Yet Engrafted--

When the doctors rounded today they were glad to tell me that Alice's white count went from 900 to 1300. Her ANC (absolute neutrophil count) came up slightly, but still considered 100. Because her white count came up significantly maybe tomorrow we will see more nuetrophils.

She has felt overall better today. :) Today we have seen a significant change in the amount of times she vomits. I am so happy for her.

Yet, another long night,I was happy to be by her side. She wouldn't let me leave her bed...nor close my eyes. There was a little shut eye throughout the night. However, by 7:30 am she decided to be tired so I caught a nice little nap. At one point last night I asked the nurse to distract her enough so I could slip into my bed and get some sleep. The sweet nurse must have chatted with her for 45 minutes. I love the nurses here, they are the best.

Sometimes I fall asleep rocking her and there is nothing I can do about it. It reminds me of the feeling when you are trying so hard to stay awake but you just can't no matter how much you fight it, and when you fall asleep you think only a split second has passed but upon waking you realize how much time has gone by--usually it's me waking to a soggy diaper on my lap.

Several months ago when Natalie and Alice were in the hospital together, Tyler and I woke one morning to a hospital room covered in Alice's favorite color of marker PURPLE! She colored the entire room, even our socks and we had no idea. It had been a long night in the ICU with Natalie, and we were exhausted, apparently Alice was feeling well enough to doodle the marker dry. Fortunately many alcohol swabs later the room looked back to normal.

On one of the movies she likes to watch, there is a Care Bear preview and she loves to dance to the fun music. It's hard to hear the cute music on the video but it's a happy tune. The words are "I wish all my troubles away." Amen Alice!!

I actually talked Alice into wearing clothes, she was cold after a bath so I made a big deal about warming up in a nice pair of pants...a few moments after putting them on she wasn't so happy about her decision to wear them. I had to snag a picture of her face. A look of disappointment.


Friday, February 17, 2012

Day 31 and still counting

Alice is a trooper. She received red blood cells today. Her numbers are lingering still at 100ish. Her body really likes challenging the new marrow. Her antibodies are like steel and just need to find their exit. The steroids should help...that is the hope anyway. The question being raised is, "Can the steroids make enough difference on already existing antibodies, or is time the only medicine?" That question has been bounced around a handful of doctors...unfortunately there are a lot of unknown processes that occur in the body.

Tomorrow and the next day will be key for decision making. If there are no improvements in her counts then the steroid will be tapered immediately.

Good news, less vomiting in the past two days--still plenty, but less. Bad news, the diaper rash and pain inside her intestinal track is worsening. It will take several weeks to balance her bowels.

Alice still has no appetite, however, we order food and place it before her. Even one bite can help.

The Backyardigans have worn her out!

But don't worry they are still playing.

Just turn your head to see this picture. I wanted to remember the chaos of the IV pole. I forgot to rotate it in it's original format.

Thursday, February 16, 2012

No Change in Counts

I have a lot of information for this post, hopefully I can simplify it.

Day 30 for Alice, Day 57 for Natalie

First of all Natalie is doing awesome. When we came in to the clinic on Monday they checked all her blood levels and they were stable and rising. The other levels they checked were consistent to last week. Because her CMV was not going down they doubled her anti viral medication-this means she will have an added infusion into her line. I tried a day or two without any anti nausea medication, and she managed to get through the day with out throwing up--hooray, one less medication to intake. So far, we have eliminated two of them--only nine more to go.

Alice's ANC is still change. Last week the doctors sent out for a handful of tests. The infection/viral tests that have returned thankfully have been negative, more are pending. The main test that I was interested in has reported. This test is called Chimerism Testing/Engraftment Analysis. Basically what this means is...see below (rather than me explaining--I found a great description from the internet)

"A Chimera was a creature in Greek mythology usually represented as a composite of a lion, goat, and serpent. Contemporary use of the term “chimerism” in hematopoietic cell transplant derives from this idea of a “mixed” entity, referring to someone who has received a transplant of genetically different tissue. A test for chimerism after a hematopoietic stem cell transplant involves identifying the genetic profiles of the recipient and of the donor and then evaluating the extent of mixture in the recipient’s blood, bone marrow, or other tissue."--Seattle Cancer Care Alliance

As of today Alice's blood/marrow consists of somewhere between 70%-85% of the donor and the remaining amount still her own. We suspected this was the case, which partly explains the delay and difficulty it has been for her body to engraft. Her antibodies are aggressive and continue to attack the new cells being made. The understanding is that her body is not making more of her own antibodies (a good thing) but the antibodies that were already in her system pre chemo are lingering and fighting. This means that time is in our court. Those antibodies will eventually die off, but she needs to engraft in the meantime.

The plan is to give her a so called stress dose of steroid to suppress the antibodies attack mode so her white cells can convert into neutrophils. I wanted the doctors to take this route last week, now with the chimerism test results the consensus is steroids. Hopefully this will help her. The next few days will indicate.

The down side is that she will be on steroids for a few months--they need to be tapered over a period of time. Steroids have terrible side effects. We are extremely familiar with them.

Another risk in using steroids is the slight chance of loosing the graft. If the dosing is wrong it can cause her to loose the graft due to over suppression. The statistics for graft loss in this situation is about 10%. We feel confident that this will not happen.

Okay not so simply….that is as simplified as I can be. Trust me, I have much more information in my head, but I will stop here. Sometimes I wish I would have received a degree in something else…I am so fascinated with the microscopic things.


Wednesday, February 15, 2012

Owies and Cheetos!!

Alice has adopted the word "owie" a lot lately. She has developed diaper rash. When I change her diaper I avoid wipes and just give her a mini bath each time to wash with warm soapy water. Which has been about every 30 minutes today. She likes the bath. Then I let her air dry on my lap for a while...needless to say I have changed my clothes a couple times today because I didn't get her diaper on soon enough.

Like Alice now, I remember Natalie crying in pain each time she needed to use the potty. The mucositis affects the entire track throughout the body. This phase felt like it lasted forever with Natalie. I'm so sad for Alice.

She ate some cheetos today. That was good. They didn't stay down but at least she had an appetite. Of course they don't want anything healthy...Natalie's first food was Doritos.


Tuesday, February 14, 2012

Back to 100

Alice's ANC showed a count of 100 this morning and white blood cell count of 900. This is very good, we hope she will gain some momentum tomorrow. She slept until 2:30pm today, I left before she had woken up. My dad took over today so as to give me the afternoon off. Thank you everyone for the birthday wishes. Grandpa had tried to convince our children that I turned 50 today, but Matthew wasn't falling for it.

Natalie is doing well, she still has her aches and pains, but she is walking around the house on her tippy toes and wearing a smile.She continues to remind me that she does not want her hair to grow back. She's is so content on being home, we love it.

Grandpa said Alice played for a couple hours but was worn out soon after and fell asleep. The results from the tests that were taken yesterday should arrive in a couple days. We are anxious to see what the results will be as they are testing for a couple different viruses, one of them being for Epstein Barr. Its been a long day, will have a better post tomorrow.


Monday, February 13, 2012

A Happy Day--Day 27

Alice was happy today. She played and played with some new toys that were made just for her...miniature. Today Alice's room transformed into Valentines Day fun. Tyler said she really likes it. It's perfect for her and she needed a little something to brighten her spirits--thanks Judy and Alisha!

Still no ANC. The doctors are sending for some tests that may give us a better picture of what is happening inside her little body. It's possible that her old cells are being stubborn and fighting the new cells that are being produced. If this is the case her medications will be altered again, and hopefully none of this will require any more chemo or similar drugs.

Tyler and I are very anxious to hear the results from these tests and hope that her delay in engrafting is something we can resolve.

Physical therapy came and helped her for a moment. She sat on this cute yellow animal thing. It required strength from her legs to keep it in balance. I was very impressed with how well she did.

Natalie had an appointment in the clinic today. She is doing awesome. She has a bit of a cough, which could be asthma related. All Natalie's cell lines have continued to's amazing. She was excited to see Alice and watch a cartoon on her TV.

Tyler and I gave Alice a bath the other day and she loved it. She had her own little tea party in the water...she tried to drink her bath water but we caught it just in time. I quickly found some bottled water and cleaned her tea cup so she could drink. Later she begged to get back in, so we had a second bath shortly after.

Sunday, February 12, 2012

One Step Backward

Today Alice's ANC number dropped back to zero. It was a little disheartening to say the least, but we have hopes that it will return tomorrow. The doctors will be drawing for special blood tests to see what the hold up is on engraftment.

When she had some energy today she enjoyed skyping with the family. Last night Matthew asked to shave his head. I was up for it so we did, now he looks like Natalie. When Alice was skyping with him, she continued to mistake him for Natalie. It was pretty funny. He spent the morning trying to talk Blair into doing the same thing. Blair wasn't too keen on his proposal.

The video below is a little hard to watch. In the past Lisy and I have written about the occasional, but necessary dressing change both Natalie and Alice go through. I thought of describing tonight's experience, but instead made the decision to capture it and show how difficult it can be sometimes. Thankfully, this was more of a mild experience this evening. I am so impressed with Alice's willingness to do those things which repeatedly cause her pain. She cries, but continues to lie still until the procedure is finished.


That purple balloon has been a source of comfort many times, as well as a good distraction. It must remain somewhere by her bed at all times, she will notice if it's moved.

Saturday, February 11, 2012

Good News!

Today Alice has an's 100!! Hooray! We hope this trends moves ahead. She could possibly engraft by Tyler's birthday--Valentines!
Alice received blood today, it will give her more energy.
Last night was a good night for her and I. We spent the entire night next to each other in her bed talking and snuggling. I counted to her all the chicken pox scars on her little bald head. Well over 100...I actually stopped counting, because I got tired. We had a lot of fun though.
It was great to be with Alice for a couple days straight-I didn't want to leave today, but knew I needed to get home to the others. Evie was happy to see me...although, I think Tyler was the most happy. The one holding down the fort at home truly has the more difficult job.
When the doctors rounded today I had several questions for them. I had been concerned about a medication. By the end of our discussion we discovered that her dose was too high and needed to be adjusted. I felt better about being there to sort out some of those issues.
I'm excited to see what her numbers will be tomorrow.

Friday, February 10, 2012

Day 24 Alice--Day 51 Natalie

I'm sitting here next to Alice's bed watching her sleep. I keep an eye on her heart it reaches 175+ I will push her button for more morphine. Within 10 minutes her heart rate will slow a little as her body feels a titch of relief from the pain. Wow, this has been a struggle for her little body. She's hanging in there with all her might.
Alice's breathing/airways have suffered more than we had imagined. Natalie did very well considering the circumstances. Her determination may have played a big role in her recovery. She had a better understanding of what to expect than Alice has. Natalie also received sibling marrow.
Sweet Alice is just too little to understand what is happening. But she is a fighter, and she will press on.
Yesterday the lab called to confirm that Alice's CMV (cytomegalovirus or common cold virus) tests came back positive. She was positive for CMV prior to transplant, but apparently her levels are higher due to being immune suppressed.
Alice's white count is rising, however, no ANC. The considerations are that her body is being suppressed due to the virus and/or the white cells are being used to fight CMV and cannot mature into neutrophils enough to engraft. Therefore, the doctors added a new medication called Foscarnet which should slow the CMV and allow her body to engraft. Natalie required this same treatment. It is a common thing in transplant patients.
We will try not to be overly concerned at this point, unless of course we do not see improvement in the next few days.
Today Alice has wanted to drink lots and lots of water. That is great, however, she really hasn't kept any of it down. At least she is trying. Yesterday I ordered her some rice and toast. She ate some rice (maybe 20 grains) but it was something. She shared some with her friend Katie one grain at a time. Katie works here at the hospital and visits on occasion.
Physical therapy resulted in the therapist holding Alice in her lap because she was too tired and weak to play. She turned down the opportunity to bowl...soon enough she will be ready to knock the pins down again. Although, she will never turn down a foot rub. When she wants her feet rubbed she will pull them out from the blanket and point to them.
On the other hand, Natalie is home keeping everyone on their toes...we can hardly keep up with all the games and fun. :) She keeps busy, and loving every minute of it. Natalie walks around the house all day with a little smirk on her face because she is so happy to be home and feeling better.

Thursday, February 9, 2012

Day 23

I woke this morning early in anticipation for when the doctors would make their rounds and find out if Alice's ANC would have improved. Before they came, I sat by her side and watched her. I could tell her lips were a little more swollen and she felt warm. I am weary of fevers as they can be a sign of infection, however they can be a sign of engraftment too. When the doctors came she was still asleep. Their report was that yet again her white cell count was up to 800 but still no ANC count. They explained to me that this is not out of the ordinary, however if she does not show signs of engraftment within the next few days, the plan would be to tweak her medication dosage. They informed me that on occasion the med dosage amount can suppress the engraftment process. They were confident in their delivery but I could tell it was also given with a bit of caution. I believe it was because when a patient is taken off too quickly from the high dosage of medications, their reaction to it will vary. I'm trying not to think about that until it needs to day at a time.

Lisy is there now, Alice needs her mother. As fathers, we can do many things, but there really isn't a substitute for the healing power of a mother's love.


Wednesday, February 8, 2012

Happy or Sad?

Alice's white counts were 700 today...ANC zero.

Tyler called me tonight and said that Alice really wants to see me. I was just serving the children dinner, so I quickly finished helping them, and rushed to the computer to Skype with her.

Upon calling her she seemed so down. She began to get emotional, I know she is homesick. I can't imagine what might be going through her mind. She must be wondering where her Mom is and why isn't she with me.

After seeing her, I told Tyler..."that's it--I'm going up there and I'm not coming home until she is with me." I know I will feel much better tomorrow when I can be there.

I didn't realize Tyler was filming us on Skype. It breaks my heart to see how emotional she is. She wanted to be happy but was so frustrated that she wasn't with us. We all tried to cheer her up--Matthew has a giant stuffed cat fish and he was pretending that it was eating my head, she laughed then cried. Actually, now that I think about it...I would cry too if a giant cat fish was eating my mom. (a two year old's perspective...should have thought that one through first)

I'm glad we are keeping a record/journal of all this. It's hard to record the sad things but I know it will make us all stronger in years to come. We are kind of journal crazy people. Well I guess I should speak for Tyler, he hasn't missed a day in his personal journal for several years--and I'm sure that he recorded the day he solved the Rubik's cube.


Tuesday, February 7, 2012

Day 21--Alice

Thank you to so many for another great blood drive (Highland). I wish I could call each person who has helped in any way and personally thank you.

The days are feeling so long. Alice is improving each day (we think), but it's ever so slight. She vomits most of the day and night. Her poor little legs are so weak. She does not want to stand because she is too weak. Natalie was forced to get out of bed and walk to the bathroom throughout the day and night. I really think that made a difference in her strength recovery. Physical therapy comes periodically to help Alice, however, the real problem is that she is too sick to do much. Soon this will be behind us and the memories will be more sweet than sad, largely because of the much love and support we have been enbraced by.

It feels so strange each night as we gather for prayer, to have Alice away. When the children pray they ask that Alice can come home soon. We miss her so much. Her favorite place is under the stairs...the play closet. Her little kitchen set and dollies are there. That light under the stairs has not been on for a while.

It's amazing to me how much a little person can shape your life in two short years. Since she was born she has been a little bit sunshine to everyone.

I clearly remember about 10 months ago when she was ill in the hospital...I was having a really hard time during this stay and felt very scared. One night I was home with the other children and I was so restless and emotional. I gathered the older three children and asked them to help me because I was sad. We decided to pray, as we knelt down together and prayed for Alice, I remember telling Heavenly Father that we need Alice in our family and pleaded that she might get better. I soon felt a peaceful feeling in my heart and knew that Alice holds a very special place in our family, an important role...and yes we need her. No wonder it seems so empty without her around.

Tomorrow will be another day closer :)


Sleepy Day

Alice woke this morning early. She wanted to play but could not overcome being sick every 15 min. Her white cells continue to increase as her body is working to adapt to her new marrow. She was overcome by exhaustion around noon and slept until 6pm. She had a window where she felt good enough to paint her nurse's nails. Afterward she became tired again and fell asleep. Her nurse said her sleepiness and low grade fever is a good sign that she may be engrafting soon.

Monday, February 6, 2012

Alice has had a rough go of it this morning. She awoke around 7:30 and has been vomiting ever since. She is exhausted now and has fallen asleep. I hope that she will feel a little better when she wakes up. The doctors came in with news this morning that her white cell count is up to 500, but her ANC count is still 0. Should be any day now that the ANC will start to register a count in the upward direction.

Two nights ago I solved my first Rubik's cube. Took me a month; I know.... its pathetic, but I'm in a special club now. It's the " I'm 34 and had to use a youtube tutorial because I couldn't figure it out for myself club."


Natalie up for a visit with her little sister.

Alice getting her weight checked:

Saturday, February 4, 2012

Day 18--Another day closer

I came to Alice's room bright and early today. I couldn't wait to get here. It was like I was a kid again and feeling that excitement of arriving at Disneyland. I haven't been able to be here since Monday/Tuesday. I was so happy to see her.
I sanitized the house and fed the baby, and prepared Natalie's meds before coming...I thought Tyler might appreciate a heads start for his adventurous day at home.
Alice's breathing is improving a little each day. Apparently the nurse practitioner informed me that this past Wednesday they were debating whether or not to send her to the ICU. They gave a type of emergency medicine (racemic epinephrine) through a nebulizer that cleared her airways just enough to keep her out of the ICU. Racemic epinephrine is practically the same thing that is given to someone with a very severe peanut order to open their airways when having a severe reaction.
Alice's white cell count is 300 today...second day in a row, but her ANC is still zero.
Even with her counts slowing coming in--it will yet be a while before her airways improve. The mucocitis is a large part of the problem. However, there are other things going on as well. Some of her respiratory difficulty began before transplant.
Honestly the days can't pass fast enough for me. I am anxious to see her feeling better. It seems as though she will be a week behind Natalie's schedule of engrafting.
Almost all the pictures of Alice she is without clothes. I know she must be cold, due to the chemo and hair loss...although she refuses to wear clothes. I have tried all the tricks in the book to dress her. It would just make me feel better to see her warm and cozy. She never has liked wearing clothes. Who knows, maybe she is in fact hot. I would like to imagine that she is as comfortable as possible considering the circumstances.
At home, Natalie continues to stride forward. She has terrible joint pain and her feet hurt often. This is common after transplant. She is a trooper. The other day I played a made up game called "spy" with the kids. Natalie and Matthew were a team, and Blair and I were a team. The object was to sneak around the house touching three different strategically planned objects and returning to your home base without being seen.
It was quite hilarious as Matthew was so frustrated that Natalie couldn't keep up with him and continued to blow his cover. She was enjoying the game so much she didn't mind that they were caught often.
Natalie asked Tyler if she could always be bald. She doesn't want her hair to grow back. She loves the fact that she doesn't have to wash or brush it. Plus she says she looks better without it. :)

Friday, February 3, 2012

Day 17--Alice

Alice spent most of the day awake and talking. This is BIG. She must be feeling a little better. We hope she is turning the corner. Her white counts came up more today. We think she should engraft in the next few days. This is Wonderful. The physical therapist came to work with her today. She was too weak to bowl standing up. However, she must have bowled for an hour on the floor. Another infusion of platelets today.
Her breathing has improved some, still vomiting a lot. She gets to see Mom tomorrow!
Below is a follow up story KSL did on the girls.

Thursday, February 2, 2012

Day 16

Alice was able to sleep most of the day. Her breathing has not gotten worse, however it has not improved either. She woke up around 3pm with a little energy and guessed it; the Backyardigans. For an hour she and I conversed, and watched those animals sing and dance. She loves it, and that's all that matters.

Ed Yeates from KSL came to the hospital this past week to do a follow up story on the girls. He is really a wonderful person as it seemed to us that he has taken a great interest in the girls. I have been told but not confirmed that it will air tomorrow night at 5 and 10pm. Natalie was cute as they followed her around the hospital when she came back for a scheduled appointment. She did a good job as we knew she had no desire to be back at the hospital again. We were very proud of her. The camera crew then came over to Alice's room to take a few shots. It went well enough, we'll see how it turns out.

Alice and I skyped Lisy and the kids today. Its always fun to watch her initial reaction when she sees the kids or Lisy. She gets a sensory overload similar to when a child first walks into Disneyland. It is sad however, after a couple minutes have passed her demeanor calms down and she simply stares at the screen. Her look was discernible, she misses her mommy. It was a sobering moment. Below is a video of her not wanting to give up the Rubiks Cube

I am personally hoping that this weekend Alice will start to show signs of improvement. Last night there was a close call with her broviac line. A blood clot had blocked her line and for a couple hours it was looking like they might need to place an IV and possibly replace the line. My mind quickly recalled Natalie's ordeal with her replacement. I wasn't ready for another, but prepared myself for a long night. Thankfully, after much attention and work the nurses were able to unblock the line and dissolve the clot. There was a palatable tense feeling in the room for a while; but it was not to be, and all was well.

Wednesday, February 1, 2012

I am I said

In the early hours of the morning I awoke to Matthew and Blair in our bed. I know that perhaps one day I will miss it when our children are too old to come into our room and push me out of bed in the middle of the night. However that "day" was not last night. I quickly realized I wouldn't get any rest with Matthew's knee in my back, so I decided to head off to the couch; both Matthew and Blair looked too peaceful to disturb anyway. I slept well enough until the morning came and I was awoke by Blair dangling two Wii controls in my face requesting me to play with him. I had to decline his request as Lisy and I are trying to clamp down on the video game play. He's got "game fever," so we are doing our best to balance him out with reading and chores. Those games can be contagious; I had to catch myself the other night playing Lego Harry Potter. WOOOOOO, I could have spent all night exploring Hogwarts.

Anyhow, after Lisy had given all of Natalie's medication to her this morning, she went to run errands while I helped the children do their homework. I have so much respect now for those who choose to home school their children. It really does take a healthy amount of discipline to make it a success. I'm so grateful to Lisy, who has the fortitude to head up lessons for the children consistently. We have tried keeping to a schedule similar to school, so its' cute when the kids remind us when it is time for recess.
For recess today Matthew wanted to play the "orange game." It's simply throwing orange balls at each other as we run around the room. Natalie loves it. She is able to keep up for a short time until her joints start to hurt. I love to watch her smile and be happy, so good for her. The balls we use are soft, but carry enough weight that if you throw it hard enough it can deliver a sting. Today's highlight was Matthew beaming me with a fastball between my eyes. I dropped immediately; my eyes watering and seeing stars. After I gathered my senses, I decided it was early out day for school.

Alice is hanging in there. Her throat sores are constricting her breathing such that the respiratory team was called in to evaluate her. Her little body was working so hard to get oxygen to her lungs that they decided in addition to her blow by oxygen she would need a nasal tube, and an additional medication to open her airways. It seemed to work as her oxygen level rose. One of her lines is giving us problems, it isn't flushing. The nurse is working with it and will let it sit overnight with TPA. In the meantime they have to do her meds still, she will need an IV placed to accomplish this because the other line is constantly running. She isn't going to like having an IV placed.
She is very uncomfortable now, but we have hopes that upon the weekend she will show some signs of feeling better. She does not say much, and when she does you can hear the struggle from the back of her throat. We are so happy when she does communicate with us through pointing and waving.

On a different note, after spending so much time at the hospital it amazes me how much higher my threshold is with regards to fluids and odors. Case in point; today I cleaned the toilet on my knees with a Clorox wipe in one hand, and fudge pop in the other. I thought to myself, "this is pretty gross," but I'm good with it. Best fudge pop I ever ate.

Now on a lighter note. The other day I was driving to the hospital, and Neil Diamond was playing on the radio. When Neil started to tell me about where palm trees grow and how rents are low in L.A., he had already (as he always does) sold me on singing with him. With one hand on the wheel and the other playing the air tambourine, I began putting on a clinic at every Foothill Drive stoplight. I'm sure if it weren't for people adhering to the law, they would have passed on the clinic; but it didn't matter, I was making it happen. By the time I arrived at the hospital, I was charged and ready to go. If you too would like to put on a clinic, follow this link and make it happen:

Thank you all for following Natalie and Alice's progress. We are so grateful for your encouragement and love for our children.