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 27, 2013

Drain Tube Removed

Yesterday was very hard for Tyler and Alice...She was miserable and in much pain.  Her drain tube didn't appear to be helping.  The doctors were discussing the options of removing the drain tube with the understanding that if it worsened they would have to do surgery and be more aggressive with it in order to clean out more infection.

Tyler called me at 11:00 a.m. and asked that I come to be with him sooner than we planned, as I was planning to switch places with him anyway.  Tyler needed relief as much as Alice.  He surely had a hard shift.  It can be so exhausting when things aren't going smooth.

Shortly after I arrived the resident surgeon came to examine the infected area and assess the drain tube.  Tyler managed to talk her into removing the drain tube before she left the room.  Alice was given a dose of morphine shortly followed by another and quickly and easily the tube was snipped and removed.

Some time later she was able to find a more comfortable position and fell asleep.

Tyler was so on edge all morning.  Once I arrived I just gave him a pat on the back to assure him that everything would be fine...he nearly jumped out of his pants-he was so startled.  It made all of us laugh...everybody in the room, including the nurses.  A little comic relief goes a long way.  He claims I pounded his back...I assure you that my strength is not so and that he was overly sensitive.  Regardless we laughed and felt better afterward.

I warmed he and Alice some chicken bone broth soup I had made the night before and froze in small baggies.  They both seemed much more content afterward.  I was so glad I took the time to boil a whole chicken and make a wholesome soup for them.  I even broke open the bones so the marrow would cook into the broth.

Alice said this morning that she thinks the "chicken broth bone soup" has made her owie better already.  She loves it and continues to want more.  I'm going to need to make another batch.

Indeed her infected area does look better today...a decent amount better.

The drain tube needed to be removed, we have been cleaning the area very thoroughly, and she has been receiving neupogen through IV...all of the above have been helping.

Last night she slept almost the entire night with the exception of a huge blow out was an ordeal to clean.  Regardless, it was likely her best night since we came in.  Sleep is good!

In the meantime the bone marrow doctors have located a 10 out of 10 match for Alice.  The process to finalize the match takes several weeks.  There isn't a huge rush, but some, as we are allowing her body a little more time to prove itself.

Still much is unknown, but we already feel much better about her situation...whether we just needed the news to sink in or that we feel she has improved a little, it's hard to say.

At home Matthew and Blair are intrigued with spiders lately.  They saw a tiny little spider on the bathroom floor and were certain that it was a Brazilian Wandering Spider, the most dangerous of all ;).  Blair claims it bit him....he thinks he might be infected and could die, but he said that he has a special anti venom power and will be okay.  I continue to remind him that we don't live in Brazil.  He says, "I know Mom, because I'm an American." Each day Blair has a "new" spider bite somewhere.  I will examine him and say, "Oh wow, your anti venom must be working because there is not even a trace of a bite."  He just smiles at me.  He can't wait for summer when they can catch Daddy Long Legs and such.  I told him when it gets warm we will go on a spider hunt.  He loved it.  For me this is a big deal...I don't do spiders.  My older sister was bit three times in the same night by a black widow when we were young.  She was fine after being treated but I haven't cared for spiders fact it takes all I have to smash them.  I have to use practically a whole role of toilet paper, unlike kids who think one square is enough.  Ewww...just thinking about it gives me the shivers.  The more I talk about this I think our spider hunt will entail the driveway only and hopefully we can find a lonely Daddy Long Leg or something.

Blair thinks he can talk me into letting him have a pet Taranchula....NEVER!


Visiting Grandpa in the hospital after his surgery.  Natalie was anxious to see Grandpa.

Natalie was enjoying being the visitor and not the patient.  Evie  was getting comfortable on the couch bed that Grandma sleeps on.

Alice with Kevin and Amber

A nice bath...she said, "Hey, where's the rubber ducky?"

This is a 4T outfit...clearly too small.  Alice is swollen and hardly looks herself, I think it's cute.  She will fit it soon enough.  I just had to get a picture because it was so cute.

A visit from Barbie...a wonderful visit for Mom too.  Barbie has spent much time here as well several years ago, we talked about the life at the hospital and all the crazy things that come with it.

Alice has been practicing writing her name on the iPad.  She now has all the letters represented...good work Alice!

Monday, February 25, 2013

Waiting, Wondering, and Wishing

Alice improves a little each day...only a little.  She is using less pain medication and on her feet more.  The drain tube still remains, however, we hope it will be removed soon.  Unfortunately the infection is not clearing up as quickly as it should.  We wondered if maybe she could come home this week...however, she needs to heal more before they will allow her to go home.

Each day we wait, wonder, and hope that her counts might show some changes...even a little would be great.

She received another blood transfusion today.  It has been a hard day for Alice.

This day one year ago was the Share The Love event, and Natalie and Alice Fish day.  Many people sacrificed greatly in our behalf.  Our hearts overflow with gratitude.  Recently, Tyler and I saw a video that Jessica had taken of the event.  It was very humbling for us to see such an event take place.  We were able to see faces of so many that attended, it made us feel so loved.  We could not be fighting this fight without all of you.

Especially thank you for your prayers.


Saturday, February 23, 2013

Biopsy Results/Ear Surgery

Yesterday Natalie had surgery on her right ear drum.  The surgery is called Myringo Plasty with Fat Graft.  She was willing to proceed knowing that she would be asleep and not feel anything.  The surgery went well and she seems to be recovering nicely.  It will take about six weeks for her ear to the meantime it needs to stay completely dry.  The procedure entailed grafting a small portion of skin from behind her ear and with that skin patching the small hole that remains from having a tube.

She is looking forward to possibly hearing better and in the near future being able to swim without worrying about getting water in her ears.

I was overly nervous for this simple procedure, due to being under more stress lately...I was relieved that it went so well.

I have been meaning to post Alice's bone marrow biopsy results for sometime now, however, I needed to take a little time to sort it all out and accept it before I felt like I wanted to talk about it...thus the added stress lately.

When the doctors delivered the news to Tyler and I we were devastated, I was at home on speaker phone, while Tyler was with Alice in her room conversing with the doctors.  I kept wanting to say 'what?' like maybe I heard them wrong...but as terrible as the connection was it was in fact true and hard news to hear.

Alice's bone marrow has less than 10% cellular density and no longer is producing any cell lines to sustain her.  She is entirely dependent on transfusions of red cells, platelets and antibodies.  Her white infection fighting cells are almost non-existent.  Unfortunately infection fighting cells can not be donated.

Alice is hanging on to her graft by a thread.  There is a small chance that somehow it can revive itself, this is our hope....of course we are going to hang on to any glimmer of hope and continue to seek answers to improve her situation.

Currently the plan is to adjust (let up a little) her anti suppressant medications enough to provide all opportunities for her marrow to thrive without provoking added graft vs. host disease.  The entire process is incredibly delicate and has been from the beginning.  We understand and know that Alice's life in its entirety has been a miracle.

The past couple days have been overly challenging for Tyler and I as we have each experienced moments of emotional weakness and exhaustion.  We are struggling to find something solid to grasp as we look for options and solutions.  The doctors are going forward with the matching process once again in the event that Alice needs transplant again.  The risks of a second transplant at this time are much greater than before.  She is very fragile, the doctors have expressed great concern in Alice's behalf.

Initially when this unfavorable news came to us I felt so discouraged and upset, I struggled to focus my thoughts, I cleaned the entire house, sorted through toys, organized clothes, etc.  I had to do something to pass the time as I was fighting the anxiety associated with this situation.

Recently, I was feeling overwhelmed and extra emotional, I went down to the cafeteria once Alice fell asleep.  I was past hungry but needed the nutrition.  I was just sitting to eat when I saw an employee hospital friend passing by on break...whom I have not seen in several months.  It was a sweet tender mercy for me as this inspired person said all the right things I needed to hear at that moment.  I cried more than I ate...:)  But of course felt much better afterward.  A good cry can be so therapeutic.

The peace that comes as we remember the Lord's hand in our life continues to remind us that He is indeed in charge and will take great care of His sweet Alice.


So Cute...the bottle is her comfort.

Our most favorite game...passing time as we fast.  Love this girl!

Wednesday, February 20, 2013

Fever, Back to The Hospital for Alice/Surgery--Clinic for Natalie

I can't lie, there are days I just don't feel like posting.  Today is surely one of those times, although, I am motivated to do so, because perhaps these times are the most important to record.  
Today has been wonderful and challenging all at once.    

Our favorite roller coaster that we ride seems to have picked up a little momentum...we woke early this morning to sweet Alice lying next to our bed whimpering.  I climbed out of bed wishing it wasn't morning already to discover that she had a temperature of 103+.  She wasn't well and we knew it.  Alice had re-developed an abscess (diaper area) and was in much pain.   Several months ago the surgeon lanced the abscess at her bedside, however, this time we (doctors and us) felt it better to fully sedated her to ensure a thorough cleaning and placement of a drain tube.  Alice was so strong last time, but she is emotionally spent and we didn't want her to feel nor remember any of this. 

The surgery went well and she is recovering fine.  Possibly she will remain in the hospital for a few days to ensure the abscess area is healing.

As For Natalie:

Natalie had her last clinic visit with the bone marrow service until the summer of 2014!  This is a huge milestone for her and for all of us.  She had one final lab draw.  Her counts are amazing and she is doing wonderfully.  

Quick count summary:  ANC 4000, T-cells, B-cells, K-cells are normal.  Chirmerism is 100% B cells, and 97% T cells.  Whole blood chimerism is 97%.  Hemoglobin is 13.0, platelets are 93, all IgG/IgA,/IgM levels are normal. All kidney and liver functions are normal.  Hydration levels are great.  Her white cells under laboratory testing are responding to several different types of bacteria.  The response is there and will continue to improve over time.  What this means is that her immune system is responding/working properly when introduced to different bugs.  

Natalie will continue to be followed regularly by pulmonology and neurology.

Its's amazing to think that she is on the road to a NORMAL healthy life.  
A handful of times throughout the day I found myself holding back tears of gratitude for all that Natalie has accomplished.  I continued to look at her and then at Blair who gave his marrow to her and found myself overwhelmingly grateful.  

Natalie shared something with me a couple weeks ago, I wish to record.  She came to me one day and asked me how long it takes for a wish to come true.  I told her it depended on the wish.  She said it had been two minutes and still it had not come true.  She then proceeded to inform me of her un-granted wish.  She explained that she wished for an imaginary friend that only she could see, someone who would play with her.  I nearly cried when I heard this.  I told Tyler; immediately we felt it was time for her to be with peers, regularly.  We spend time with Natalie during the day and fulfill many of  her requests, however, we are not her peers and cannot replace that.  Her un-granted wish partly influenced our decision to put her into school straight away.  Ironically the day after she started school the doctors gave us the green light for her to return to school.  Natalie has a wonderful teacher and incredible classmates who constantly adore her.
Natalie has blossomed so much in the last two weeks since she started school.  She was invited to a friends birthday party...20 darling little girls all having a pajama movie party.  She had so much fun, when I picked her up she talked the whole way home telling me every detail and smiling all the while.  We could not have been more happy, a sweet moment for Tyler and I to witness, I felt like my heart was smiling with her as if I was the giddy little girl at the party.


Tyler and I are confused as to which is easier....having someone in the hospital or having everyone home.  We have become used to the hospital life so much that we have developed some sort of rhythm in this lifestyle.  When we are all home and in one place we hardly know how to function under normal circumstances, relatively speaking ;).  Nothing is better than being together in whole, however, our challenge is apparent in silly ways such as simple tasks of homework, organizing productivity, keeping a schedule and even remembering what the schedule is.  We continue to feel like there is plenty to accomplish and much we wish to implement, yet we turn in circles and become dizzy.  Now, if we were dealing with a life threatening situation, suddenly our purpose becomes clear and we find our grove.  Have we truly been in survival mode so long it has become standard?  

Blair had an emotional meltdown as I was leaving the house with Natalie.  He was afraid I wasn't coming back for a while.  He just needs his Mom more.  All the children do.  Being a sibling in such a situation is a hard job.  I gave him extra hugs and kisses and promised him I would come home by the afternoon.  I even promised him I would play Mario Brothers with him and find all the mushroom houses, a subtle smile slipped out of him with such a promise...and when I came home I played all the Mario Brother's I could handle.  He kissed me and hugged me no less than 20 times during our playing.

Matthew has been so strong to motivate each of us to stay on task and keep our chins up.  He is the first to wake and helps Blair dress and do his homework as well as doing his own.  He is a good boy.  When Tyler is away he seems to fill the empty spot in my bed.  Matthew capitalizes on opportunities to sleep in Mom and Dad's bed.  He often has bad dreams...why is it that when you are in your parents bed--there are no bad dreams...I was the same way when I was little.  It just felt safe!

Gary, Grandpa, Tyler's Dad has come to our rescue many times...we are so thankful for him.  This journey would have an entirely different scenery without him.  All of our family members included have been amazingly helpful.  Many Thanks!!


Nurse Nicole saved the day and played UNO with Natalie while I spoke with the doctors. Natalie 's biggest complaint about clinic is being so bored when I talk 'doctor stuff'.  We love our nurses!

Last Clinic Visit!  I will say it was very anti climatic...Natalie didn't really understand what it meant ...I was a bit distracted with Alice being just moments away from surgery and such.  I almost wanted her and I to savor the moment a bit more.  The doctors seemed more excited than us.  Also I suppose there are mixed feelings on my part.  I occasionally find myself needing to trust that we have truly arrived at this point with Natalie.  I assume that it is normal to feel a bit nervous letting go of the leash with bone she ready? Would if this? Would if that?  Yes, it will be alright! :)

So exhausted!

Sunday, February 17, 2013

Going Home

What a wonderful surprise we received today.  Alice is coming home.  Yesterday the doctors mentioned she may be able to go home today, I was so excited but didn't want to count on it until it was official. and it is...Yeah!

She is taking all her medications by mouth except Caspofungin and Magnesium.  Alice was taken off TPN yesterday and she did well.  She eats plenty.  She is still on a mild diet and will be for a little longer.  She will be on a low lactose and low fat diet.

Alice's gut biopsy, from two weeks ago, showed no signs of Celiac.  We are thrilled about this, and assume because her gut was so damaged by the Graft vs. Host disease we found it difficult to distinguish between gluten issues and GVHD.  Any-which way I suppose it is wise to not overdo any one item in a diet.

We still await her bone marrow biopsy results.  Her next visit to clinic will be Thursday this week.

All in all, Alice feels better and looks better!


Getting ready for the day and anxious to go home

Saying Good-Bye, Tabitha, Manny and Makenzie

We found this sign on the door when we arrived.

Friday, February 15, 2013

Platelets and Biopsy

Alice received platelets early this morning to prepare her for surgery.  She was NPO (fasting), starting at midnight until the biopsy at 1:30 p.m.  She did well enough.

Tyler said Alice's bone marrow biopsy went very well, it was quick and when she woke she was happy to eat.  I was so glad that they were able to get what they needed from her hip.

In the past some doctors were not able to retrieve anything from her hips so they proceeded to her knee.  They finally retrieved what they needed, but her knee was sore and in pain for months.

We anxiously wait for the results on Tuesday.

Matthew said today that he had a dream that Alice was home and sleeping in her bed.  He jumped out of his bed in the night to see her and she wasn't there.  We all miss her around here.

Because it's flu and respiratory season children under 14 are not allowed on patient floors, so the kids have not seen Alice at all except through Face Time/Skype...thank goodness for that.

Maybe Alice can come home next week.


Thursday, February 14, 2013

Happy Valentine's Day--Progression 2 Diet--Happy Birthday--More Blood

What a fun Valentine's day it has been.  Alice was given a shoe box covered in aluminium foil, filled with decorating supplies.  She had a great time decorating her box, then throughout the day different staff members would deliver Valentines.  Her box was full!!  She would sort through each Valentine and show them off all day.  

Alice's diet was advanced to a progression 2 diet.  She is able to have a little more.  The steamed rice with butter was well accepted.  She wants to eat non-stop.  Her tummy seemed very extended after eating, so maybe she needs to pace herself.

Alice received more blood today, her red cells dropped again.  Tomorrow she is scheduled for a bone marrow biopsy...results will not be back until Tuesday.

I gave her a long relaxing bath and a pedicure.  Alice was happy to feel so good...foot and head massages are the best!


p.s. Thank you to all those who made Tyler's birthday so wonderful and for a great Valentine's day.

Enjoying the Valentines

A visit from Kevin

Eggs...yummy!  She requested gluten free eggs.

A special Valentine delivery from Grandmother.
I wanted to surprise Tyler today because it is his birthday.  I had arranged to have someone stay at the hospital with Alice so I could sneak home early and see Tyler on his birthday.  He apparently had the same idea and arranged someone to stay with the kids at home so he could see me at the hospital.  Luckily we did not cross in transit and he beat me to the surprise, so we decided to have lunch in the city and it was wonderful.  We needed that time to be carefree and together, knowing all our children were taken care of.
It was the best Date!

Wednesday, February 13, 2013

Progression 1 Diet

Alice's diet advanced a little more today.  She is able to have apple sauce, canned pears, canned carrots, canned green beans, and cream of rice hot cereal.  She was very excited to have hot cereal.  She carefully enjoyed every bite.

Sometime later she had a melt down; she and the cafeteria misunderstood each other.  She wanted to order the food herself and thought they said she could have steamed rice with butter and salt.  When she realized that wasn't going to happen she bawled over the phone and was upset for sometime.  I rubbed her back, scratched her head until she fell asleep.  It was a much needed nap.  When she woke she said, "Mom, I'm really sorry, I just want to be happy."  Oh Alice what a sweet thing you are.  Imagine someone giving you large amounts of steroids (which make you terribly hungry) and then telling you that you can't eat anything....for several days. She is amazingly patient and cooperative considering her situation, despite the emotional meltdowns.

Tomorrow is Valentine's Day...she is so excited.


Enjoying some hot rice cereal...Yummy!

Tuesday, February 12, 2013

Platelets and Advancing Diet...School?

Yesterday Alice received more platelets and was able to advance her diet to chicken broth and minimal watered down apple juice.  So far so good.  She has a chart on the board showing what is allowed to have and at what time.  The clock is just above it.  By the time we finish our stay here she will be a wiz at reading charts and telling time.  She has four puzzles, each 24 pieces, she has them down.  She can finish a puzzle in record time without help.  There are some advantages to sitting around all day.

She has good spirits and is starting to put on more weight...we are happy to see her feeling better and looking more healthy.  Her gut is beginning to heal as the diarrhea has stopped.

She wanted more apple juice so bad...she said to me, "Mom, but I will have gluten free apple juice", hoping that would make it okay.

The doctors want to preform another bone marrow biopsy soon to get a better idea of what is happening in her marrow.  Possibly they will see something helpful and possibly they will not.

Alice is such a delight to be with.  I love my time at the hospital with her.  Still not sure how long we will be here.

While I came to switch places with Tyler, our neighbors/friends kept the other children.  Tyler and I were able to grab dinner together in the cafeteria, believe it or not they have the best onion rings...well we don't eat   at too many other places so the competition isn't too stiff.  Still, I would say they are Yummy!  I think I'm going to get some more before they close...onion rings before bed can't be all bad. ;)  I used to eat my Grandma's Swiss cookies in bed all the time, could that be why I always had so many cavities...hmm?


Just happy

Shhhh......don't tell anybody!   Most likely in less than two weeks from now the doctors will give  Natalie the green light to return to school, she was told that she could go back in January for the past year, recently when she learned that it was February she was crushed and heart broken.  Tyler and I decided that her emotional health is as critical as her physical health and made the decision to let her go to school.  Her first day back was today and she only went half day.  The whole class was thrilled to see her, she had instant friends and willing classmates to show her around.  She may not be there full day for a while and might even miss a lot still, but at least she had this moment to be a part of something she has wished for, for a long time.  The doctors might say differently, however, we will cross that bridge when it comes.

She had her backpack on at least two hours before it was time to go.

Okay, I really dislike these carts for two reasons...they are full of germs and terribly difficult to drive.  I never let my kids ride in them.  Blair and Evie wanted it so bad, I gave in.  I used at least 6 sanitizing wipes to clean it.  Stores should love me because I clean all their carts like they are brand new...and often I bring my own wipes.  Well anyway, Blair and Evie must have thought they were in Disneyland.

Friday, February 8, 2013

GVHD and More Blood

Pathology confirmed today that Alice indeed has Graft Vs. Host Disease.  Her gut needs to rest completely.  No more watery apple juice and chicken broth.  Before the doctors delivered the news of no liquids, Alice said to me,  "Mom, I don't think I should eat anymore."  Then she looked up to her TPN bag hanging on the IV pole and said, "That can be my apple juice."  TPN is yellow.  I said, "You are right Alice, your tube is happy to have apple juice and not your tummy."

Still Alice was sad and upset when the doctors said no more clear liquids, however, she managed well enough.  Maybe our previous conversation helped her accept the news more easily.

She received more blood today.

Most likely she will stay at least another two weeks to ensure her gut heals properly.  Sadly she will need to stay on immune suppressants much longer now.  It will be a while before we taper her again.  Possibly two years before she is off immune suppressants.  At that point if she rejects again we will consider transplant over again.  Obviously we hope that her body will be happy with its new marrow by then; we still feel good about her transplant (donor marrow).

News flash--The whole warm antibody thing was inaccurately communicated.  Apparently she does not have a warm antibody detected.  This is big news and good news.  Basically this simplifies things more.  The doctors are starting to feel like they have a better grip on Alice's situation.  Likely her blood lines are all attached to the GVHD process and once it is under control we assume she won't need more transfusions.

Alice and I had fun today making many many Valentines.  It has saved us from being overly bored or watching too many movies.  Uncle Josh came to visit again and went home with a Valentine for him and one for McKenzie with diamond rings to go with it.

We changed Alice's dressing today and she was given Hello Kitty slippers for being so brave.  She was very happy about that.  All in all she is in good spirits, happy, and sweet.  I will say, if you want to see her in a bad mood   tell her that you need to take her blood pressure.  For some reason Alice has decided she no longer likes to cooperate when having her blood pressure checked.

Alice gets to have another sleepover with Aunt Amber tonight....FUN!

Natalie called me today and was so excited she could hardly talk.  She kept saying, "I got a receipt, I got a receipt...over and over."  I was so confused as to what she was talking about.  Finally she slowed down and told me that she waited in the line at the dollar store all by herself, paid for her item, and received the actual receipt in her own hand.  She felt so grown up and excited.  She had bought a Valentine for Alice.  Went home and wrapped it up with ribbons.  What a fun moment in life; such simple things as this creates mountains of maturity.


IV bags, IV bags, and IV bags....always something running.

Natalie found the cutest elephant book at parent teacher conference.  When we came home I found her reading it to her elephant friends.  She was determined to find an elephant book at the school book fair.  This was more important than visiting with the teachers...I am so glad she found it.
Nothing makes Natalie more upset than when Matthew mistreats her elephants.  He thinks it's funny--teasing is the fastest way to sour a moment around here.

Thursday, February 7, 2013

Gut Check/Biopsy

It was a tough day for Alice as she was required to go through both a Esophagogastroduodenoscopy and Colonoscopy. (a biopsy both her gut and lower intestine)  At first we had anticipated to do the procedure on Friday, but the G.I. doctors found a way to fit her in today. I was grateful for it because it meant she did not have to go so long without liquids if she got in today. There was some discussion between the bone marrow team and the G.I. doctors as to where and how far into the lower gut to take a biopsy. The G.I. doctors were concerned that if they went into too far, the risk of tearing the inside of the intestinal wall increased and therefore did not want to take the chance of doing so. Instead they desired to take the biopsy from the colon. The disagreement came from the bone marrow team as they needed to see further into her gut to gain a better assessment to what is going on inside Alice. After much thought and consideration of both sides I sided with the  bone marrow team and requested that the G.I. doctors to extract the biopsy from further in. They were very compliant to my wishes but again reiterated their concerns and explained the risks. I too was reluctant to put Alice in such a situation, but felt we needed to get answers now. The procedure went well however during the operation one of her broviac lines split and required an emergency fix. In addition a nasal tube was inserted to drain the excess air from her bowels. Upon awaking she was very uncomfortable with the tube. I felt so bad for her. She cried and cried to have me take the tube out.

 The G.I doctors reported that her intestine and colon had the appearance of being sore and swollen, and at eyeball glance was consistent with usual GVH patient. We will wait for pathology for the final results, but are expecting them to come back with a GVH result.


Tuesday, February 5, 2013

Hearing Test and Platelets

I had anticipated Alice being in a dreary mood upon my arrival today. I was wrong. As I opened the door to her room there were a few nurses already working on various tasks to help Alice feel more comfortable. There was enough commotion to allow me to sneak in without being noticed by Alice. I quickly walked out of her view behind Lisy and the nurses to the side of her bed where I could be in her view. When she looked up and our eyes caught each other, we shared a smile. It is such a relieving moment for me as a parent any time our children smile at me, not because of the trinket I may have given but simply because they are glad to see me and accept my presence.

Alice received platelets today and had an audiology appointment to analyze any hearing loss from the chemo. I wasn't there for it, but Lisy had reported that she passed the test and was not showing any signs of deterioration. This is a relief to us as were are still dealing with Natalie's hearing situation and how to find a solution through surgery. I have hopes that Alice will be able to come home by this Friday. It would be nice to have the family together by the weekend. We are so grateful for everyone's prayers and help. Its hard to believe you all have been helping us for over a year now. As a father I could never be more grateful for the help you have rendered to my family. Thank you.


each time Alice hears the beep in her ear she puts an animal in the bucket.

Monday, February 4, 2013

Apple Juice Bottle

A better day.  This morning Alice was placed on a clear liquid diet.  Yeah!  She smiled so big when we told her she could have a watery apple juice bottle.  It has made all the difference, just enough to take the edge off; she did indeed have a better day. Alice made Valentines for many of the nurses...then made one for herself that she is protecting very carefully.  I was instructed that mine is a secret and I can't open it until Valentine's Day.

Alice and I took a nap together was long!!!  It was awesome!  The sun was shining in the window making it warm and cozy and we slept for almost 4 hours during the middle of the day...really who gets to do that.  It's not so bad here at the hospital ;)

When we Skyped home Natalie and Alice played Hide n' Seek.  Natalie would hide and Tyler was walking around the house with the camera as if Alice were there looking for her.  It was fun for all of us.  While on Skype Matthew and Natalie showed me the wonderful art work they created and Blair danced like an Egyptian, trying to entertain Alice.

A few days ago Alice's Cyclosporine (anti-rejection med) level was 17 (extremely low) it should be 250.  The doctors were very concerned; we concluded that it was because her body couldn't absorb the medication, including nutrition because her GI system was so poor.  Her body needs to heal so we can sort out all the other things going on with her.  We are just putting out one fire at a time...the hottest ones first.

Alice started Valacyclovir today to help with her mouth sores...maybe tomorrow we will see some improvement.

At home, Natalie is recovering nicely from the Shingles.  She continues to complain less each day about the itching and pain.


The long awaited apple juice bottle
Making a bead necklace
Very nice necklace

This is what we look like after a 4 hour nap.  She did wake smiling.  

A good nap calls for a good hairstyle in front of the mirror

Grandpa and Grandmother Fish saying hello, Alice being silly.

Mom's cousin Kristy came to say hello.  

Making Valentine's

Sunday, February 3, 2013

NPO for Alice

Yesterday morning the doctors ordered Alice to be NPO (no food or drink--nothing by mouth).  Of course she was not happy about that.  Shortly thereafter, they started her on TPN (IV nutrition).  She has been very hungry and sad, yet willing enough.  The sores in her mouth seem to be getting worse.  Still she is so cute.

Aunt Amber decorated her room for Valentine's Day.  It is very cute and fun, and has brought back many memories of this time last year.

Maybe tomorrow we will learn more about her situation.  When I arrived to see her today I learned that her diarrhea has slowed.  This is great....we hope this means she does not have graft vs. host.


Great Visitors--Uncle Shane and Aunt Louise, Grandma and Grandpa Schellenberg, Uncle Josh and Aunt McKenzie

Josh and McKenzie.  We couldn't tell why Alice was upset.  Maybe she didn't want them to leave...who knows.

Friday, February 1, 2013

Alice is Admitted to ICS

Poor little Alice has not been feeling well, she is really struggling with her tummy and trying to keep her and her graft happy in the same body.  She has been loosing far more liquid than she is taking in.  She ran a fever at 3:00 a.m.; we brought her in to the hospital.  Many of her levels are out of balance (due to the severe diarrhea).  Her Magnesium level is high, her potassium is low, her acidity level is high, and she needs more IVIG.  Her poor little body is experiencing all kinds of unfavorable activity, including destruction of white and red cells.  She has some sores in her mouth that are bothering her, yet all of her struggles seem to be magnified with the high doses of steroid she is receiving (recent change).

She wants to be happy and sweet, but it's just too hard right now.  In a few days she will feel better as her body gains a proper balance and the steroids slow the diarrhea.  She has been so cute with her gluten free diet, doing very well, with the exception of her finding frosted mini-wheat cereal in the pantry with Evie, the two of them had their very own picnic on the pantry floor.  I know the more we pursue this GF diet the easier it will get; including the absence of gluten containing foods in the pantry that she can access.  Everything gets easier with time...right? ;)

The most recent plan for Alice's future is to drag our feet as long as possible and hope the steroids will get her back to baseline, as we contemplate the next step.  Because she has warm antibodies (indication that still remains the host/original antibodies), we will have to depend on time even more.  Time is a tool we hope to use in regards to her original antibodies (life span), in which have been less responsive to the chemo and other therapies.  At least for now this is a less abrasive approach, until further information is available.

I included a little about warm antibodies from Wikipedia, for my journal purposes and to help explain what a warm antibody is for anyone who wants to know.


The most common antibody involved in warm antibody AIHA is IgG, though sometimes IgA is found. The IgG antibodies attach to a red blood cell, leaving their FC portion exposed with maximal reactivity at 37°C (versus cold antibody induced hemolytic anemia whose antibodies only bind red blood cells at low body temperatures, typically 28-31°C). The FCregion is recognized and grabbed onto by FC receptors found on monocytes and macrophages in the spleen. These cells will pick off portions of the red cell membrane, almost like they are taking a bite. The loss of membrane causes the red blood cells to become spherocytes. Spherocytes are not as flexible as normal RBCs, and will be singled-out for destruction in the red pulp of the spleen as well as other portions of the reticuloendothelial system. The red blood cells trapped in the spleen cause the spleen to enlarge, leading to the splenomegaly often seen in these patients.

just loving Dad
After a 3 am admission, she is exhausted
Opps... learning to us a spoon and having fun in the process

chocolate pudding party for Evie ended on a bad note

We have tried many things to help Blair remember to turn in his work, even telling him that monsters live in his cubby at night and his work will be scared if it isn't given to his teacher.  One morning the game Headbands was left out and I had this idea; well it worked, and some.  He was excited about it, his work was turned in.  However, he came home and said some people liked it and some kids in the other class laughed.  Anyway, as parents, we are learning too.  I did instruct him to only leave it on until he arrived at school, which he did.  I still think it was cute...he made it cute.