Saturday, November 23, 2013

Clinic


We headed to the Clinic at Primary's today for a CBC & checkup bright and early.
Bella is just so happy & always so positive...it makes all of this process so much easier.
We are so lucky to have such amazing doctors and nurses, which also make the load of all this lighter.

Her little spirit is just the sweetest, and I'm glad I get to spend my days with her.
{she told everyone that she was a ballerina today}
She ended up not needing a transfusion today (which was nice)...
so we will get her tested again after the weekend.



Friday, November 22, 2013

Princess Tea Party


Nothing in this world could be more magical than a Princess Tea Party,
especially if Cinderella is a surprise guest!
Bella has the cutest, most thoughtful little friends, and she was in heaven at the party.
This was the PERFECT medicine for Bella, especially before she starts treatment.
The girls faces when Cinderella showed up at the front door was priceless...
I will never forget this dreamy day, seeing smiles on Bella's face all day long.








Wednesday, November 20, 2013

Uncle Craigy

I look at this picture of when Isabella was born & it is no wonder why her 
Uncle Craigy is putting his whole HEART into helping her get better.
I am blessed to call him my brother.

He spends endless hours researching treatments and helping her get better.
He asks about her daily, and prays for her always.
What a blessing he is in her life & in mine!
Love you Craiger


Sunday, November 17, 2013

Morning Tea

There is nothing better than having a morning Tea Party with Daddy after a weekend in the hospital.
What a lucky little girl to have such an amazing, caring, loving Daddy!
He stays with her at night in the hospital, he sings to her at night, and plays with her the instant she asks.
We both are lucky & blessed.

Saturday, November 16, 2013

Fevers=Admitted


Any time that Bella has a fever of 101, she is automatically admitted to the hospital...
with absolutely no defense against infection-with any fever they have to assume it could
be a bacterial infection (in case it is) and give her antibiotics through IV.
While she was getting her platelet transfusion, she randomly got a 101 fever and so they admitted her.
Luckily we were already there, and hadn't driven all the way home and have to go back.
These are the little tender mercies that I encounter daily...and I am so grateful for them.
They may seem small, but they make huge differences in our crazy lives.

Tyler wanted to come see her in the hospital, so we let him.
I think he was a little nervous at first, but he loves her so much and just wanted to see her.
She adores him, and was so happy to see him..and show him all her new presents from getting poked.
They both make me so proud, and I couldn't of  been more happy seeing them play together!

Friday, November 15, 2013

Transfusions


We went in today to get a CBC and Bella ended up needing a platelet transfusion.
The hardest part for me is to see her struggle and cry when she gets her IV's put in
aka "pokies"...she'll start crying and say "no pokies, no pokies".
Other than when they are putting them in, she is such a good little thing.
She dances, socializes, and is just overall happy-it saves me in all this...
I can't help but smile, laugh and socialize with her.
Every single Dr. and nurse that meets her, instantly falls in love with her.
I can't blame them.

She amazes me with her strength and energy.
She is so resilient to all of it, for the most part you would never know anything was wrong with her,
other than her bruises and petechia when her platelets get low.
Love her to pieces.

Thursday, November 14, 2013

More Answers

Today we got a call from Dr. Fair  saying he had some of the test results back.
Calling him back was so nerve racking, waiting to know what was causing this was SO hard.
He first let us know that Tyler was NOT a match.  I was definitely disappointed, but I knew
from the beginning that if he wasn't it was OK...
and the lesson that I learned from that whole experience
was life changing.  I know that when I explain it to Ty & Bella one day-it will change their lives as well.
Dr. Fair then told us how it was not a Virus, and that they were still waiting to hear back on the Genetic Test.
He was almost positive though that it would come back negative as well, since Bella didn't have any
of the other symptoms from it being that (misshaped features).
So he wanted to move forward as if this was Idiopathic Aplastic Anemia=
which means they don't know whats causing her bone marrow to stop working.
If for some reason the test came back positive, we would change the course of action.

When we hung up the phone, I surprisingly was very calm.  I felt peaceful.
I felt like I knew it would probably turn out this way, and I was glad that we finally had some answers.
I was glad we could finally move forward, and we we're SO grateful that there WAS a treatment for it.






Wednesday, November 13, 2013

Adore




I LOVE everything about her.
I have appreciated things more lately...the little things.
She is so positive, funny, nurturing, and just a pleasure to be around.
And tutu's are a must every single day!

Friday, November 8, 2013

Feeling Peace


Today has been simple, and simple is perfect.
As I hang out with this little tiny angel all day, I realize how crazy and busy our lives become.
I cherish just being here, in the now with her.  Doing nothing is doing everything...as long as she is with me.
The last few days have been crazy, and it all seems like a dream.
Today though I have felt lighter, I see more clearly, and I KNOW it's all the prayers that are being said for our family.
I have always prayed for others in need, and I know it brings blessings and miracles.
But for the 1st time, others are praying for us-and I have physically felt the power of those prayers.
I have recieved so many texts, messages, and phone calls all saying how they are praying for our family.
I couldn't ask for anything more right now, and I am grateful for amazing family & friends.

I went and renewed my temple recommend tonight, and as I drove past the temple I had to take a picture.
I can't wait to go there and feel peace in all the chaos.  I am so grateful for the temple.

Sasha sent me this quote and I love it, and need it hourly.
"Stay positive, and positive things will happen".

Thursday, November 7, 2013

Tyler's Love


I may not know a lot right now about what is causing Bella's condition,
but I DO know one thing...
that I will NEVER forget this moment when Tyler made the choice to be brave and go
get his blood drawn so we can find out if he can be a bone marrow donor for Bella-
if that is the route we have to go down.

He loves her more than anything, and even though he was terrified HE made the choice
on his own to do it.  Even if he is not a match-he has helped her already just by trying.
There are so many lessons I am learning through all of this, and one thing I KNOW is that
the Atonement of Jesus Christ is real and that he did it because he loves us...
just like how Tyler loves Bella.

What an amazing lesson to learn in the middle of heartache and wonder.
How blessed we are to have the Gospel of Jesus Christ in our lives.
Today has been a good day.

Wednesday, November 6, 2013

Understanding Aplastic Anemia


So today we sat down with Dr. Fair and he discussed with us exactly what Aplastic Anemia is.
There are three types: mediate, severe, and very severe.
They base it on the blood levels of the patient do determine the severity of it.  
Bella's levels are extremely low, having zero white blood cells, and very low red blood cells and platelets...
making her be titled: Very Severe Aplastic Anemia.

Aplastic Anemia is a rare disease where the bone marrow stops working...
not making any of the three blood lines: white, red, platelets.
Her bone marrow should be around 95% for her age, and hers is less than 10%.
There are many different reasons why this can happen, and doing testing is how to eliminate the different causes.
80% of the time, it is Idiopathic...meaning they don't know the cause.
10% could be Genetics, and 10% could be cause by a virus.
So they will be taking her blood and doing these tests to see if any of them come back positive.
So we will be waiting for about a week and a half to hear back from them...which is so hard to do! 

As Dr. Fair explained this all to us, and the treatments that could be used as well as the side effects,
my heart began to sink, and the anxiety and fear began to come back.
I didn't realize how sick she really was, and how there is no sure outcome in any of this.
It is different for every single person, and the side effects are different in each case as well.
I hate uncertainty, and this is one of those diseases where there just is no certainty.

They assume that Bella will fall under the 80% where we won't know the cause of this.
If that is the case, there are 3 standard ways to treat this.
1.  Same sibling bone marrow transplant
2. Immunosupression 
3. Donor bone marrow transplant

We will be testing Tyler when we leave the hospital to see if he is a match for Bella.
It is rare though (1 in 4) that he will be a match.
They do this line of treatment first because replacing her bone marrow with a sibling match 
gives her a 95% of working with no long term side effects and is said to be a "cure".
This is by far the best scenario.

If he is not, they will try immunosuppression therapy and try to suppress her own immune system,
assuming that it is attacking the bone marrow and not making it work.
This has a 85% chance of working, but in the 85%-there is a 10% chance of relapse 2-4yrs. down the road, a 10% chance of her getting Leukemia, and a 10% chance she could get MDS.

The last treatment is a donor, which surprised me, but it's because they can have a lot higher chance
of problems occuring in doing this.  
There is a thing called "graph-host disease" that can occur, as well as long term side effects like Leukemia, MDS, and other blood related diseases.

All of these seem overwhelming to me, and as I heard them it was like I was in a dream-once again.
How were we sitting there discussing something like this?
I know that this is what she has, and I know she is not well, and I know they can help her...
but it is not going to be easy and no one ever likes to see their children suffer and feel well.
My high of highs last night is definitely gone, and I am back to reality.
I am so grateful that is ok, that she does not have cancer, and that she has a loving Heavenly Father
who loves her and knows her better than anyone.

We get to leave the hospital tonight and go home...and I can't wait for us all to be home together!
Tyler has missed Bella so much, and has wanted to come see her.  
We feel as though seeing her in the hospital will just worry him more, 
and that seeing her at home will be the best thing for both of them.

Tuesday, November 5, 2013

The 1st Day


We arrived at the hospital, and walking in brought back so many memories of when I was admitted
there for my diagnosis of Diabetes-twenty years ago.
I couldn't believe I was going there for my daughter, who most likely had Leukemia.
No one ever thinks that something like "that" can happen to them...
"not me, not my child".
But there I was, terrified.  Not knowing what would happen or how long we would be there.

We were welcomed with the most caring nurses, instantly falling in love with Isabella.
Her spirit is a light, a ray of sunshine, and it's unmistakable. 
Dancing and telling everyone about Halloween was the only thing on her mind.
As I sat there and watched this tiny, perfect little body make every single person in the room fall in love with her,
I couldn't help but smile & cry, tears of happiness and gratefulness that she was mine.

Soon came the pokes, and the tears, and it became all too familiar for me.
A part of me wanted to cry with her, and other part knew I had to be strong for her and help her through it.
I remember my Mom or Dad always being by my side when I was there, and I would do the same for her.
She was so brave, and so cooperative.  She forgave and said "thaaank you" to the nurses.
As the night went on, all of my family showed up...not even hesitating to be there at this hard time.
My heart was filled with gratitude, and the fear and heartache was lightened.
Isabella has no idea how lucky she is to have every single one of them-but one day she will.



They immediately gave her a platelet transfusion, and would get blood in the morning for more testing.
We met one of her doctors, Dr. Fair and talked more about what to expect and the plan.
He was so kind and helpful, we are lucky to have such an amazing doctor to help her!
We all hugged her, said goodbye for then, and her Daddy would stay with her during the night.
Matt has ALWAYS been by her side going to sleep, ever since she was a newborn.
I knew he could handle it, and would be the best comfort to her there.

The night was short, and I didn't sleep hardly at all.
I knew she would be ok, but was scared out of my mind what was to come.
They prepped us that night, telling us how they weren't positive, but in most cases her age-
all the signs and symptoms point to Leukemia.
As I was getting ready to go back to the hospital, I remember looking in the mirror and just bawling.
How was this all real?  How did our lives change so drastically in one day?
How would I be able to handle this?
At that moment, I felt my Grandma Willa's spirit there with me, telling me that it would be ok.
The tears of fear, quickly became tears of relief and I knew I would be able to handle it.
How grateful I am for angels and loved ones on the other side to comfort me in times of need.

Later that morning were told how looking at Bella's blood they could not identify certain Cancer cells.
They needed to actually go into the bone marrow, because sometimes the cancer cells don't leave the bone marrow.
They needed to put her under and get bone marrow from both hips to examine it closer.
Other than her being CRAZY from the anesthesia, the procedure went well.
More waiting was coming our way.  
Asking different people what this could be if it wasn't Leukemia was on our minds.
Every single person we asked (Dr.'s, nurses, etc.) told us that it MOST likely is Leukemia, 
but there is a very rare chance it could be Aplastic Anemia-a bone marrow disease.
But for her age, and her symptoms, it was most likely Leukemia.

I'll never forget being on the phone in the hallway, and one of her Dr.'s- Dr. Fair came up to me.
He said he had been reviewing the bone marrow they had removed, and he just was convinced that
the cells he was seeing in the bone marrow were cancerous cells.
He said he had looked at it so many times, he felt like he was going crazy, so he had brought in other
Dr.'s to look at it  as well, and none of them were positive either.
My heart dropped, and a part of me was excited, but a bigger part of me did not want to be let down.
He said how they would be performing another test called a Flow Test,
which looks closer at the cells and actually can tell if they are cancerous.
In the meantime he wanted to sit down with Matt and I and ask us a few questions about Bella,
incase it was Aplastic Anemia and not Leukemia.  
There are different causes for Aplastic Anemia and he needed to weed out some of the possibilities just by asking us questions.
So we waited some more, being told that they couldn't guarantee results that night, but if they
heard anything they would let us know.

Prayers were being said everywhere, those close to us that knew, prayed harder than they ever had.
Our friends Sasha and Jeucey came with dinner, and as we started to eat, Dr. Fair came through the door.
With a calm look on his face, along with a smile, he told us that it was NOT Leukemia!
Tears of joy strolled down all of our faces, hugs were everywhere, and I was on cloud 9.
We were all so excited and crazy, that little Bella got scared...it was so funny.
We assured her they were "happy tears" and that we were all excited!
We immediately grabbed hands and said a prayer to our Heavenly Father, 
thanking him for this miracle that we had just witnessed.
I knew that prayers were heard, that Bella for whatever reason was spared of Cancer.
In every 50 cases where Leukemia is expected, only 1-2 end up not being that.
She was the miracle.

I have never had a day where I was at the lowest of lows, and highest of highs all within 24 hrs.
Needless to say, we all slept better that night.
Her loved ones who had been praying so hard and earnestly for her were relieved and so happy.
God hears our prayers, and loves us, and I KNEW that whatever was in store with AA, 
I would be able to handle it.  
I felt peace knowing I could, not that it would be easy, but that I could.

Monday, November 4, 2013

Why We Knew Something Was Wrong


I get asked all the time...
 "How did you know something was wrong?" 
"Why did you take her to the Dr. in the first place?"

About a week and a half before we took her to the doctor, she was bruising easily, and had a lot of bruises.
I asked Matt about it, and he said not to worry, and that she is a crazy, active toddler.
She def is both of those things, so I didn't worry.
Well, the Friday before came and I went to change her diaper and she had a
huge purple/blackish bruise on her hip-like she had hit her hip bone on something.
The bruise was not normal though for just hitting your hip.
We both started researching online, obviously seeing the worst case scenario-which was scary (Leukemia).
I came across a blog where the scenario was similar to Bella, but the little girl had petechia all over her body.
Petechia are tiny red dots, which are tiny blood vessels that have burst.
This little girl had a disease called ATP where the body isn't making any platelets-
causing it to bruise and have the broken blood vessels.
At this point though Bella did not have any petechia, only bruises.  
The next day (Saturday) I went to lay her down for her afternoon nap, and I noticed tiny little red dots underneath her eyes.
Having read that just the night before, I knew that it was petechia.  
It was only on her face at this point, and her energy was the same, and she hadn't been sick at all.  
I had even thought to myself right before all of this "Wow, we haven't been sick in a long time".
We both KNEW that we needed to take her in on Monday to see her pediatrician.  

I absolutely love Bella's pediatrician,  He has been both Ty & Bella's pediatricican, and as long as I live in Utah I will go to him.  
His name is Dr. Bradley Anderson, and when you think of a perfect Dr. (caring, thoughtful, dedicated, and particular), he is that Dr..
We took her in and started telling him what was going on, and I'll never forget when he said,
"Well, you definitely have my attention". 
After looking at her, and knowing she hadn't had any fevers or fatigue-he told us it was probably ITP.  
He wanted to get a CBC (complete blood count) though just to rule out anything more serious (like Leukemia).
He said he would let us know between 5:30-7 that night when he got the results back.  
If it was something more serious, we would probably hear from him sooner.
As you can imagine, my phone didn't leave my side.
At 4pm I got a call from Dr. Anderson...my heart dropped and tears filled my eyes.
Dr. Anderson immediately said,"We got the results back and her levels don't look good, all three levels are extremely low and I am admitting her to Primary Childrens, you need to take her right away."

I literally felt like someone had punched me in the stomach, I couldn't breath and I feared the worst.
We got off the phone and just held each other, trying to feel something other than terror and fear.
Tyler knew something was wrong, and started crying as well.  He said,
"I don't want Bella to be sick, this doesn't sound good."
He could feel it all too well, but we told him how Bella's blood wasn't working right,
and she just needed to get some new blood.  His little tender heart was broken, and he loves his sister so much.
We woke up Bella from her nap, packed our bags, and headed to the hospital.
I remember feeling like I was in a dream, like it wasn't real, and that our baby girl was completely fine.
The whole way up to the hospital Bella kept asking us where we were going.
She never asked me that, and I realized because I would always tell her
beforehand where we were going as we were getting ready.
Not knowing what to say, and wanting to just burst out crying, Matt calmly answered and said,
"we are going to a big building Bella, does that sound fun?"
"Sure Daddy" she said.  It was THE longest drive of my life.


Dear Bella...


Dear Bella,
I want you to know that I am writing this as you sit across from me, eating dinner in your cute little cupcake jammies.
I look at you, with tears in my eyes, and I am filled with overwhelming love for you!
How did I get so lucky to have such a sweet, spunky, hilarious, beautiful little girl?
You are exactly what I wanted, and even more than I ever dreamed.
I want you to know all of my feelings and thoughts as we go through this journey with you.
I want you to know how much you mean to us, and to every single person that has ever met you.
As you read this someday, I hope it comforts you, strengthens you, and lets you know how much you are truly loved.
I know Heavenly Father has a plan for you, and he LOVES you.
I know that I am your Mom for a reason, that you were sent to me so I can help you throughout your life,
especially during times of trial.
I love you Bella babe, and know that you will be better soon.
Love, 
Mommy