Glimpses

Today while we were at the clinic, I had one of those moments where happiness fills your heart.

Bella was done with everything, and the nurses brought her a remote control Strawberry Shortcake Car

to play with-to distract her from a princess purse she was insisting on bringing home.

She started playing with the car and her normal, happy, laughing self came out and it was pure heaven!

She would make the car run into things, and people walking by, and she would laugh so hard...

I literally felt like my heart was gonna burst just watching her.

It's moments like these that I cherish.

It's moments like these that I feel blessed. 

I feel like all the hassle and work going into each day pays off when things like this happen.

I see glimpses of my sweet, sassy, funny Bella coming back-

and I couldn't be happier when I do.

She is my everything.

Christmas

Christmas was perfect this year.

All I wanted for Christmas was for us all to be home together, and we were.

I feel so blessed...to be together and to have such an amazing family to spend it with!

Bella was happy for the most part, there were only a few "raging" episodes-

and luckily she will be off the steroids completely in two days!

Her little chubby face kills me in these pictures and every time I look at her.

She is so animated lately, and when she laughs-she laughs SO hard!

She got spoiled and loved beyond measure.

She made our Christmas, making everyone laugh over and over...

and we ALL were SO happy she was with us!

Next year at this time, we are hoping she is on her way to be 100% better.

Transfusions

This is what you will find Bella and I doing every Monday & Friday...

just playing in the Clinic while we wait for blood test results and while she gets transfusions.

Today she ended up getting a platelet transfusion, and hopefully we last through Christmas

not getting a red blood cell transfusion.

She loves playing with the kitchen, and because of all the cravings (from the steroids)

she is making me some mighty fine grub...macaroni, chicky nugs, hot dogs, and pizza! LOL

It's amazing to me how we can sit there and she can play while this blood is going into her tiny

little body and saving her life.

I never thought that donating blood would effect me so much, and so closely.

I am SO grateful for all the blood that is donated, and all the lives that are saved each day because of it!

She was so good today, and can I just say how nice it is to have her port in, and they don't have to poke her!

It has made a world of a difference, and you can add that to the list of things I don't want to take

for granted...I am so thankful and grateful she can have that!

SANTA

Tonight we ventured out and saw SANTA at the Riverwoods.

There was no way we would be taking Bella to a mall with tons of people-

so seeing Santa outside with not even half as many people sounded like the perfect plan.

Uncle Craigy & David came with us, and provided some warm fries as we waited...
Bella was definitely okay with that (haha).
It was so cold so we only lasted a couple seconds on Santa's lap, and then she was DONE.
I had no idea how she would act, I was hoping the roid rage wouldn't make a scene-and it didn't.
It was so nice to be able to go out and do a "normal" activity with her.

We ate some dinner, laughed a lot, and couldn't help but smile at Bella's chubby little cheeks.
She told Craig how she wanted him to come to our house- she melts his heart.
It was a refreshing, cold night!

STEROIDS

One word:

S.T.E.R.O.I.D.S

Two meanings:

Eating & Beating

Our last week has consisted mainly of eating.

The doctors warned me that she would be hungry and emotional on the steroids-but I had no idea what was coming.

When she first started getting the steroids, we definitely saw the anger and the emotional part of it.

The emotions she is feeling are amplified, and that can be amazing (with her telling me she loves me 50 times a day)

or it can be a nightmare (with tantrums and yelling).

The hungry part is what has blown my mind though.

In the hospital the 4 days we were there, she would get hungry all the sudden and she would eat really quick, but then be done.

So in my mind I just thought that's how it would be for the next couple weeks.

But we got home, and about 1 week into it-it all changed.

One morning she woke up crying so I went into her room and asked her what was wrong...

"I want chicky nugs Mom" she cried out.

I said, "What?" (laughing)

"I want dinosaur chicky nugs!" she screamed.

Wow.  I couldn't believe she was crying for dinosaur chicken nuggets at 7:45 in the morning.

Soon came the macaroni requests, multiple times a day.
At night she woke up 3 times one night asking for hot dogs & macaroni...it was insane.

It was all so sudden, and so apparent that the steroids were definitely changing her appetite and her little body!

At her last appointment I talked to one of her doctors about it and he said it was all totally normal.

He said she would crave the saltiest, fattiest foods and that she would urinate a lot more because she 

will be drinking more cause of all the salt...which also is happening.

He also said her face will swell up because of the steroids as well...yup, chubby cheeks are there!

So, we have one more week of the steroids and I never knew I would be so glad to stop them!

All I do is hear food requests.  Mostly macaroni, but also happy meals, hot dogs, mashed potatoes, etc.

And it is ALL day long, it doesn't matter if she JUST ate.  

It's so crazy how she could go from me practically having to force her to eat-

to wanting to eat non-stop...it blows my mind and I just have to laugh at it.

I keep telling myself, at least she isn't this little frail thing that has no appetite and looks ill.

She is definitely healthy and as long as she is fed-she is happy! LOL

I have had to remind myself though-not to take it personally when she gets really angry and tells me

that I am the worst Mom...

cause most of the time-two minutes later she tells me I'm the best and that she loves me! 

Words from Sister Jaynes

Isabella,

I want you to know how much peace and comfort this email gave me from your Aunt Michelle.

I know when you read it, you will feel how much LOVE she has for you.

Even though she is on her mission, she has given me so much hope and strength through all of this.

Her words and thoughts are in my head daily.

As we were deciding what treatment to go with, she told me something I will never forget...

"I will for sure be praying for you and matt to know what to do about options for treatment! 

Heavenly Father really does trust you! 
One thing that I love is that when we keep our covenants and are righteous...
God will guide our footsteps. 
He will not allow us to make huge mistakes.
 He is in control! He promises us His help! 
So don't worry...i will be calling down the powers of heaven for you Tal!"

Here is her first email when she found out what was going on.

I remember crying and crying, and just cherishing every word she wrote.

I felt the Spirit so strong, and her love for you even stronger.

We are both SO lucky to have her.

From Sister Jaynes

November 6th, 2013

Hi Tally. 

I don't really know where to start or how to explain my feelings. I want to say that I just love you. 

I wish i could just come and give you a hug. But since i cant i will just write the things that are in my heart. 

I was thinking the other day of Joseph Smith and everything he went through. 

He and Emma definitely had their share of trials and were only doing things the Lord wanted them. 

Sometimes we ask why do things happen to good people or in this case, cutie little Bell. Like Joseph, sometimes we ask,  1 O God, ^awhere art thou? And where is the pavilion that covereth thy ^bhiding place? In His way, the Lord then answers us the same way as he did Joseph.... 7 My son, ^apeace be unto thy soul; thine ^badversity and thine afflictions shall be but a ^csmall moment; 8 And then, if thou ^aendure it well, God shall exalt thee on high; thou shalt triumph over all thy ^bfoes. 

If there is one thing I know and would want to just say, 

(i know you already know this but it is always good to hear it again)

 God loves us and He is there.

 Just like you felt that literally for Bella. Sometimes we dont understand the why. It can be hard to know. 

I remember Dad telling us how helpless he felt when he and mom found out you had diabetes.

 I can not imagine, but i am guessing that is how you and matt are feeling. 

It is when our knowledge of Gods plan for us comes into play.

 He knows us perfectly and knows what experiences we need to become the best people we can become. 

Bella- babe is just angel and Heavenly Father knew that she could handle it. 

He also knew what parents He could trust in sending sweet Bella to. 

What a blessing it is to have the gospel and the knowledge of how suffering can bring us closer to God. 

I hope you can feel my love for you all the way from here!!!!!!!!!!!!!!!!!!! 

Kiss the kiddos for me. a few times. 

 Heavnely Father is in control Tiff. 

He knows what is best, sometimes it sucks learning the lessons He wants us to learn. 

You and the family are always in my prayers - but just know that even more are coming your way. 

Be Happy - tell Bell that I love her!!!!!!!!!!!!!!!

Love you.

Normalcy

If there is one thing I yearn for these days it's "normalcy".

I don't know what to expect each day, and the days where we do just normal, every-day things...

those days are the best!

We started off the day going to PCMC and getting Bella's CBC, liver & kidney, and cyclosporine counts.

It was a morning I wish not to remember at first.  

Waking her up is her least favorite thing-and putting lotion on her port and putting her in the car

to go to the doctor is a recipe for steroid disaster!

But as we started driving in the car, and I looked back at her just crying, I couldn't help but just feel for her.

I felt compassion, I felt sorrow, and I felt overwhelming love for my little munchkin.

This routine is not ideal, and it is not easy on her, and it is definitely not our "normal".

I said a prayer, and I asked for help.

I wanted her to feel and BE happy.  I knew my attitude and my feelings would help her.

I told her how proud I was of her, and how much I loved being with her-even driving to the hospital.

As I started telling her all these things, I saw the fear and sadness leave her little face.

We held hands and we smiled.  We had each other in all this-and that's all we needed.

We started making jokes, and I was so happy to see that contagious little personality come out.

From then on, our day went as good as it could be for doctor appointments and transfusions.

When we came home, we decorated her little tree and she even went out on the balcony to play in the snow 

(1st time since it's snowed)

These little bits of "normalcy" make my day-even though

I realize we have a new definition of normal now-and I am trying to make the best of it.

I know Bella doesn't understand completely that her "normal" has changed, 

and that is what I am most thankful for in all of this.

Transfusions and Tree Decorating made it be a good day!

Aunt Brittany

Thanks to Aunt Brittany, I definitely started today with a grateful heart!

Britt came and hung out last night, slept over, and came to Isabella's clinic appointment with us...

it was SO nice to have someone there with me, and Bella loves her Aunt Brittany.

Bella had a rough morning, and was NOT happy to be back at the hospital.

She was so grumpy, uncooperative, and just angry.

Having Britt there really helped me keep my calm, and make the load of everything easier.

Bella has been so sweet since her treatment, especially towards me.

Today was different though...she was so angry and irritable.

The steroids she is on are definitely starting to shine through!

Her emotions, whatever she is feeling, are to the extreme.

When she is loving-she tells me over and over how much she loves me.

When she is angry-watch out cause your head will get ripped off.

Luckily she is on the steroids for only about a week and a half.

I'm grateful she can have this treatment, and I need to remind myself of that in the moment 

when nothing calms her down, and I just want my sweet little girl back.

Good news though, she didn't need a red blood transfusion today.

Her levels stayed at 10, so I was able to make it back home and go to Tyler's Christmas Devotional.

We will head back there Monday to get her levels checked and most likely transfuse her then.

A Girls Best Friend

We got these from a sweet friend today (Jessica), and Bella would not let them out of her sight.

She kept smelling them and picking off the tiny little buds and giving them to me as a "surprise".

Flowers are definitely a little girls best friend today-they made her day that much better!

We are so lucky to have such sweet, thoughtful friends in our lives...we love every single one.

Happy Place

I laid awake last night and realized that my mind is constantly on Isabella and her condition.

Whether its thinking about medicine, her CBC, transfusions, side effects, treatment, long term effects,

her socializing again, being able to do normal things, etc...my mind doesn't stop, and I don't know when it ever will.

Nights are hardest for me, I worry.  I have nothing else to focus on-and it gets the best of me.

As I realized how much it really is on my mind,

 I tried to visualize what or where we would want to be if all this wasn't going on...

my mind automatically went to San Diego and the BEACH.

I'll never forget the moment of pure bliss while both Tyler & Isabella ran, laughed, and smiled for hours.

It was one of those moments that will be in my mind forever, especially the feeling I felt seeing them SO purely happy.

That is their idea of heaven, and I am in heaven simply when they are!

So this is where we are headed when all the craziness slows down.

"Heaven"

Home Sweet Home

Home Sweet Home

This little munchkin slept all night, woke up happy, and played with her brother all morning.

Dr. Fair told us that just being home could help with everything, and it totally has.

I feel like she has been herself for the most part today, which is a beautiful thing!

She is definitely a Momma's girl right now.

She has told me probably 50 times today that she loves me.

She comes up to me and kisses me, and wants to snuggle at any chance.

I am eating IT UP!

It's the best thing in the world to hear, and that bond is priceless.

I ended up taking her back to PCMC today to get a platelet transfusion,

her platelets were at 3-which were a lot lower than they thought they would be.

They took a CBC last night after her last dose of ATG, but we didn't want to stay another hour and a half for the results.

So with them being that low, we had to go up there again,

it was so nice though to have her port already accessed, and to just go with no pokes!

She was so happy and social with the nurses, and they all wanted to take her home...

and I don't blame them one bit.  She was winning me over as well, and she's mine. LOL

So the plan from here on out is to have 1 Home Healthcare visit to test Cyclosporin Levels,

and 1 visit at the Clinic at Primaries weekly. 

She will most likely be receiving transfusions at the clinic visits, till her levels start coming up on their own.

Dr. Fair is so optimistic about her doing well with all this, and it is SO good to hear that.

I am grateful for his knowledge, concern, care, and love for our sweet girl...

we are lucky to have him as her doctor and as a friend through all this.

I know he was meant to be her doctor, and I know we are in good hands.

What a refreshing, somewhat "normal" day it has been, I loved every part of it.

Treatment Day 4

Today we get to go home!

No one is more excited than this sweet little girl.

She has not left this room (other than to bathe or go on a walk around the halls) for 4 straight days.

In the past she has not asked to leave, but today she has asked a few times.

When we started packing stuff up tonight, she got all excited and said

"I go home Mom?  It's time to go home?"...and she's never put her shoes & socks on quicker!

They told us it would be a minimum of 4 days, but could be up to 14 days that we could be here...
only having to be here for 4 days is amazing.
She is able to leave after the last dose of ATG because she has done so well...

no rashes, fevers, or allergic reactions.

They are putting her on some blood pressure medicine since it was a little high, but nothing serious.

We still have to watch her carefully for fevers, rashes, or Serum Sickness-

which is another bad reaction they can get anytime up to about 14 days after the ATG is given.

I hope she keeps up the way she has been doing, and I know being home will make it even better!

What an emotional roller coaster the last 4 days have been, but in the end we are extremely blessed

on how well it all went!

In my mind I keep thinking that something bad has to be on it's way- for how smoothly it all went.

I know that God works miracles though, and I know he loves her so much.

I know that prayers are being said, and they are heard...every single one of them.

I can't say that enough!

I can't wait to lay her in her own bed, and have Ty run up to her in the morning and see their faces...

it will be like Christmas morning!

Money's for Bella

Last night I came home to be with Ty, since he had school the next day.

We have really tried to keep his schedule as normal as possible-just to help him out as much as possible.

We had a sleepover, and it was much needed after 3 long days being away from him!

When I got home, as we were going to bed he said to me

"Mom, I hope you had a good day at the hospital with Bella...I wish I could have come and shared my money's with her".

Tears of joy and love came, and I couldn't have been prouder of this little guy!

He truly loves his sister, and I could tell how much he had missed her.

I had to snap this picture of him before school today, I can't believe how old he is getting.

I can't WAIT for the two of them to see each other hopefully tonight!

Yay!

Treatment Day 3

Before I got to the hospital today (I went and stayed at Jen's house just down the street),

I had been able to have a calm, rejuvenating morning.

I felt like I was ready for the day, whatever may come, and I was just happy that I got to go be with Bella.

When I arrived, she was so happy to see me and kept telling me over and over-

"Mommy, I missed you.  I love you Mommy"...it was the sweetest.

We asked if they could give her some Ativan today, which is an anti-anxiety medicine that could help with the rage.

We didn't want her or us to go through what we went through on Day 2.

They gave it to her and it worked miracles!

She was so much more calm, and was a lot nicer...and just herself.

I could tell it was making her a little loopy, but it was much better than crazy!

She still was not reacting bad to the ATG, other than her blood pressure being slightly high.

We have been SO blessed for her to be doing so well.

That's one of the reasons I was in such a great mood, and was feeling so fortunate.

Then later today we had more VISITORS!

Uncle Craig, Aunt Kim, and Aunt Britty all came to see her.

They showed up with flowers, a huge Hello Kitty animal, and makeup...

the hospital is a much better place with visitors & makeup!

She was in heaven, and was loving every second of them being there.

Isabella is surrounded with love, and no one loves and cares about her more than them.

She will know someday how they would do anything and everything for her.

We are hoping and praying that tomorrow goes just as well so we can all go home.

Bella misses Tyler so much, and I know he misses her!

Rides

One of the many things Daddy does for her every day at the hospital...

but "rides" are definitely her favorite!

You never know what personality your going to get each minute, the scowl has been seen a lot.

We understand though. She is a trooper!

His LOVE Is Unfailing

I know before we came to earth we offered to endure certain things,

and I know Bella offered to go through this trial-and I said I would help her.

There are situations in this life that change us, and those same situations, even though they aren't ideal,

change others lives around us for the better as well.

Ill never forget the day after  Isabella was born, the nurse rolled her into my room and said

"She has been crying all morning, and she just needs her Momma".

She placed her on my chest, and the second I started talking to her she stopped crying.

She slept on me for almost 2 hrs.  It was the best feeling in the world!

Little does she know, I need her more than she needs me.

As I sat in bed this morning, I watched a video a friend had sent me that she said has helped her in hard times.

It is called "Mountains to Climb" and is by Henry B. Erying.

I sat there and bawled my eyes out, over and over again as I kept watching it.

It instantly strengthened me.  It recharged me for the day, and made me so thankful for how great it has all gone.

One of my favorite parts of the video is when he says:

"We can feel the love of God.  The Savior has PROMISED angels on our left and on our right to bear us up,

and he always keeps his word.  His Love is unfailing."

I have literally felt angels, and I have definitely felt his love.

I know this is true.

Treatment Day 2

{Pre-steroids}

She looks so content and well behaved in these photos, don't let them fool you...

We are happy that the first day of treatment went SO well...no allergic reactions or anything else!

Coming here I was ready for the worst, but hoping and praying for the best.

We have been extremely blessed and lucky that she has reacted so great this far.

I couldn't help but think last night going to sleep that it was because of ALL the prayers being said on her behalf.

I feel overwhelmed daily by the texts, calls, and messages we receive about Bella and our family.

The power of prayer is real.

Today was the second day, and overall it has gone really well-other than the roid rage Bella got.

They start the treatment each day at the same time, and yesterday once they gave her the Benadryl

(to help with any allergic reaction she could possibly get), she was out cold.

Today they gave it to her, along with the steroids, and not long after came the rage of Bella!

It was crazy how mad and out of control she got-like she was possessed.

At first it was kind of funny, but she got worse and worse-and I started to worry.

She hadn't eaten a lot, she was tired from the Benadryl, and the steroids were making her so cranky.

The nurses came in and she got even madder. 

They wanted to ask the doctors if there was anything they could give her to calm her down-it was that bad.

As I sat there and tried to hug her, console her, and just help her-the more mad she got.

I was trying to hold it in, I was trying to be tough, but I couldn't after a while.

Tears of frustration and heartache came, and I just wanted her to be her happy self.

I felt so bad, I felt so helpless.  

She had no idea how she was acting at this point, she was out of control.

As time went on though she gradually got more and more calm.

I sat there and tried to explain to her that I knew it was hard, and I knew she wanted to go home.

I remember feeling the same way when I was admitted for Diabetes.

As I told her how I knew how she felt, my heart ached for her and I know she could feel it.

She looked at me and I told her how when I was a little girl, I was here at the hospital too.

I told her how I knew how she felt, and that we would get to go home really soon.

She eventually started being nicer, and I could tell she was feeling better.

At this point I was emotionally drained.

Matt had been gone running, so I had to handle it all on my own.

Each day is always something new, and each day I learn new things.

Today I learned that I am thankful for my sweet, sassy girl.

She has the sweetest, most contagious personality, and I am lucky she is normally like that.

Treatment Day 1

Today we start Bella's treatment at Primary Childrens.

It will consist of ATG/Cyclosporine.

ATG is a medicine from a horse serum that contains antibodies that help suppress the immune system.

It will be given for 4 days (runs over 6 hrs. each day).

She can have some serious side effects to this medicine, and thats why she is admitted-to be watched closely.

So we will be here at least 4 days, but could be here up to 2 weeks (fingers crossed).

She will be given steroids for 2 weeks to help with the side effects (chubby baby coming right up) 

Cyclosporine is a long term medicine that she will start today as well, 

and take orally for most likely 6 months to 18 months.

They will check her CBC each week, and it should start making a difference at about 6 weeks.

If she is NOT responding at all by 6 weeks, they will take her off of it and have to do a bone marrow transplant.

If her levels are increasing at 6 weeks, they will continue it and check her at 3 months...

this time frame is a pretty good indication if it will work or not.

If they are still increasing, she will be on the medication for about 18months.

This medication has some pretty gnarly side effects taking it long term-

which have been hard for me to accept.

One of the side effects is hair growth on the face!

Seriously?

My little girl is gonna be hairy with a unibrow?

How am I suppose to take that all in?

I guess we are gonna need to invest in some wax and razors...haha

She can also have thickening and growth of the gums, which sounds so painful.

I know all these are temporary, and in the long run she won't have them-but it is still hard.

I know it is all worth it if it makes her feel better.

I have been so nervous the last couple days, wondering how she is gonna react to all this medicine.

My mind wanders, it keeps me up at night, and fear definitely creeps in.

I constantly am reminding myself to NOT fear.

I need to have faith and know that she is being watched over and Heavenly Father knows what she needs.

I am grateful in these times of fear that we even have a treatment plan for her!

I'm SO glad that Matt and I can both be here with her, and that she can have that comfort today.

My prayers have never been more sincere, and my heart has never been so hurt for someone.

We are fasting today for her, hoping that she responds well to the side effects short term,

and that this will cure her long term.

Oh how how we love this little girl.

Potty Time

She finally got up and walked tonight, and the 1st place she went was to her little potty.

She has been going in the potty lately on her own, and I'm glad she still wanted to go.

I'm so happy she is up and walking before her treatment tomorrow...

I think she will feel even better tomorrow!

Port Recovery

This girl hasn't moved all day.

We moved her form her crib to our bed, and this is where she will be.

She has been in quite a bit of pain, but as long as we have pain meds in her-she's fine.

We are watching really carefully for fevers, cause they could come anytime and can be dangerous.

I'm so glad the port surgery went well, and that we have a couple days at home resting before treatment.

She slept till almost 11am today, and I know she's happy to be in her own bed!

PORT

Today as we were leaving to PCMC to get Bella's PORT put in, she said to me

"We going to Dance Class Mom?"  "I go dance with Nora?"

Dancing is what she LOVES to do, and dancing with her bestie Nora makes it that much better!

Nora is the reason Bella smiles, and I know Bella is the reason people smile when they are around her.

As I told her "No, we will go in a little while" my heart broke.

I know it's gonna be at least 3-6 months before she can go and be around people,

and it could even be longer if the immunosupressants don't work.

As I tell her this, and I think about it in my head-I have total faith that she WILL be able to dance again.

When she will be able to- I DON"T know.

We arrived at the hospital and they started her on a red blood cell transfusion 

(her platelets were great from the transfusion the previous day).

It was nice to have the IV already in from the day before, so no "pokies" today.

While she was getting transfused, we got a visit from the JAZZ bball players and dancers.

Krissy was so excited to be there the same day we were there, and so was I...

she gave me a little pep in my step through all this-l love & adore her and all her dancing (so talented)!

So after the transfusion we headed down to the OR.

By this time it was late-4ish, and Bella hadn't ate or drank anything since 10am.

She was def hungry and tired.  She actually fell asleep in my arms while we waited for her to go in.

This was a HUGE blessing, I knew handing her off at the door for surgery was gonna be rough.

She stayed asleep and so when I handed her off, it was a smooth transition.

While we sat there and waited, I obviously had a lot on my mind.

Being prepped and educated on the PORT all day was making this all seem more real.

She will be needing transfusions until her own bone marrow starts making the cells again,

and this will be weeks if not months.  I have known this, but the realization of it all has now come.

As the OR Dr. came in and talked to us about the surgery, and told us how this port should

be good for at least 3 yrs., my heart sunk.  Three years?  It sounded like eternity.

Bella's treatment of immunosupressants (if they start working) will be at least 18 months.

I feel like 18months compared to her whole life is no time at all.

When I'm sitting in the hospital though, and realizing that I will be here at least once a week for transfusion,

that is overwhelming.

I sat there and started to fear, fear the worst of this not working and having to do a bone marrow transplant.

The thought of her having to go through 2 rounds of treatment kills me.

The thought of her not being able to just do every day activities makes me wanna cry.

But as the fear came, I started telling myself things I was grateful for.

Matt does this when he goes running, and he tells me these things when I'm having a hard time.

I'm grateful....

she only has one port instead of 2, which some kids have

she can have a port and not be in as much pain from the IV's

there is treatment and options

for Dr.'s and modern day medicine

for family and friends that love and support us

for prayer

that I can be with her every day

I can hold her when she is scared

she is so tough and brave

we live so close to a children's hospital

for a loving Heavenly Father & Jesus Christ

for her sweet sassy spirit

As I listed all these things in my head, I knew I was blessed.

I have been told to "not fear, and that Heavenly Father is with me".

So I choose to have Faith, and that what seems overwhelming right now-

will come to pass.

Today I am most grateful that she is out of surgery and doing well!

I know she did so well and it all went so smoothly because of ALL the prayers

being said on her behalf-I am so grateful for every single one.

We are home and all ready for a good night sleep.

Nose Bleeds

Every day for the last month has been an adventure...you never know what is going to happen.

Today, we woke up to Bella having ANOTHER bloody nose, after cauterizing it the day before AGAIN.

I knew she just needed a transfusion, and with surgery tomorrow they were planning on it anyway.

So off to PCMC we went, nose plug on and ready to go!

Bella of course was a trooper and kept it on the whole time...not even complaining.

We got to the clinic, and a nurse Paige was SO excited to see Bella-along with everyone else.

She totally plays off it, and tries to make them all smile...it's the cutest thing.

The transfusion went smoothly, but her little nose would not stop.

They didn't want to send us home with it still bleeding, so we waited.

She fell asleep in my arms (which never happens), and I rocked that little sweety for almost 2 hrs.

They ended up spraying Affrin up her nose to help constrict the blood vessels, which I think helped.

We finally got to home around 6pm, and we both were exhausted and ready to leave.

We are hoping she sleeps well tonight even though it's still bleeding a little.

Big day tomorrow...she will be getting her central line put in (port).

Im excited, nervous, but overall just relieved we can start this whole process!

How You Will Find Her

This is how you will find Bella these days...

only in her diaper, no pony tail, just playing at home.

Matt and I ended up taking turns being home with her on Thanksgving, 

since we didn't think it was a good idea for her to be around a lot of people-right before her treatment.

Luckily she is still young enough that she doesn't really understand Thanksgiving, and she doesn't know what she's missing out on.

I am THANKful today for a lot of things, but especially to have this little sweet girl home with us.

I am thankful to be with those I love.

Happy Thanksgiving!

Treatment

For the past 3 wks, I think it's safe to say we have spent most of our days researching Aplastic Anemia.

I knew when Bella was diagnosed with this, Matt would know anything & everything about it.

The more we researched it, the more we realized that there were more than one option when it came 

to treating Idiopathic Aplastic Anemia.

Bella's Dr.'s have suggested a line of treatment using ATG/Cyclosporine, 

but we wanted to make sure that was the best treatment for her.

ATG/Cyclosporine is the gold standard across the country, and has great outcomes.

But we also found that Johns Hopkins offers a different first line of treatment using High Dose Cytoxin-

which has also had promising results, even though it is more intense up front.

Uncle Craigy has been an amazing help in researching these treatments, and has been so dedicated in

helping us find the right treatment for Bella.

I am so so grateful for him and his love for Isabella, it means more to me than he will ever know!

Matt also found a few clinical trials through the NHI that we found interesting.

With so many options, my mind has been going non-stop...especially at night.

We both felt like we needed to talk to all the different Dr.'s offering different treatments, 

and then taking them and presenting them to Bella's current Dr.'s.

We knew that once we did this, and once we sat down and talked them over-

we would have a better feel as to which one to choose.

I have never been more uncertain and worried about making the right decision.

All of the treatment options have about a 85% chance of working.

The bad news is about 10% relapse, 10% can get Leukemia, and 10% get MDS.

When you think of her relapsing, or getting another blood disease as serious as these, your heart stops.

I think that has been the hardest fact to deal with in all this...not knowing what the outcome will be.

Dr. Fair called us Tuesday morning and told us after reviewing all the treatments and presenting them

to 4 other Oncologists/Hematologists-

the vote was unanimous that the best treatment in their opinions was still ATG/Cyclosporine.

"Patients are put through significant risk of invasive infection and prolonged hospital stays. 

Why do that when the outcomes are similar/better with CSP?ATG?"- BMT doctor.

Dr. Fair once again told us that he felt this was still the best treatment as well, and he felt good about it.

We respect and appreciate his opinion and know he wants whats best for Bella as well.

After hearing this unanimous vote, and reading the reasons from the other doctors, it started giving me peace.

To see ALL the doctors come to the same conclusion was a sign, but I needed to know for MYSELF.

I have felt this all along, that no matter what treatment we did for her, I NEEDED to know it was right.

After talking it over with Matt some more, we both felt peaceful about going down that path.

We knelt and prayed, and asked Heavenly Father if choosing this treatment would be the right thing for Bella.

We felt peace, we felt comfort.  We sat there holding hands, and just waiting.

I have never wanted a more clear answer in my life.  I have never feared an outcome more than this.

As I knelt there waiting,  having faith that I would KNOW, I felt Heavenly Father's arms around me.

He was there comforting me in the hardest trial of my life.

"Do not fear, I am with thee".

Those are the words that were told to me, and those are the words that I will repeat every time I fear.

I know that this is the treatment that is right for Bella.

I know that whatever comes our way, Heavenly Father is with me.

I don't know what next week will bring starting this, and I don't know what the outcome will be...

but I do know that Heavenly Father heard my prayer.  

I know that he is with me, and knowing that I am able to concur my fears.

I have faith that Bella can be and will be healed.

ER

Yesterday started off great...

we celebrated Uncle Craigy's Birthday at our house with the whole family, it was so refreshing!

We also met with Dr. Fair at Primary's and discussed with him the other treatments we have been researching.

Dave, Craig, Matt, and I all met with him and shared all the info and concerns we had.

He was so open minded and was interested in learning more about the HD Cytoxan.

I felt SO much better sharing all the info, and letting her Dr. know what and how we were feeling.

Dr. Fair said he would research it all a little more, review it with the other Oncologists/Hematologists and get back to us.

I left feeling like a huge load had been taken off my shoulders, and knew it was important to hear their opinions.

Bella had been getting more bruises, petechia, and her little mouth started bleeding during the party.

We knew her platelets were low, but the plan was to take her in this morning (Monday morning)

and get her CBC here at AF Hospital, and then they would send the results up to Primary's. 

Well late last night around 10pm, she started getting a bloody nose.

We knew that we needed to watch those carefully, especially if it didn't stop bleeding after a couple hrs.

Well she just kept crying out in her crib "I'm bleeding Mom, I'm bleeding"...she did this off and on for almost 2 hrs.

Finally I went into her room and decided I would bring her in our room.

I picked her up and she started to gag, so I rushed her over to her dresser and she threw up a lot-and it was all bloody.

My heart dropped, I yelled for Matt, and we hurried and called Primary's.

I told the nurse she had just thrown up a bunch of blood, and she asked me if she had a bloody nose.

She then told me that was normal if they have had a bloody nose...

the blood drains down their throat into their stomach-making them nauseous and throwing up.

She said to actually lean her over and pinch the bridge of her nose, trying to help it form a blood clot. 

She said her platelets were most likely REALLY low, and if it didn't stop we would need to take her in.

Well as we sat there in the bathroom, trying to help her nose stop bleeding-she got more and more pale.

She then threw up more blood 3 more times.

She started teetering back and forth, closing her eyes like she was fainting.

We knew right then that she needed help, her little tiny body was shutting down.

We drove as fast as we could to the AF Hospital.

We called Primary's on the way and told them what was happening, and asked them if they could

transfuse her at AF Hospital...they weren't sure, but said they could rush her up to them if they needed to.

It all happened so fast.

Once again, I felt like I was in a dream.

By the time we got to the hospital (less than 5 min away),

she had bled from her nose through an entire hand towel...she was loosing so much blood.

When we arrived they quickly admitted her and started to help her.

They started by giving her liquids through IV, and started cauterizing her nose to help it stop bleeding.

They gave her zofran for the nausea, cause she threw up again when we got in the room.

Her blood pressure was down, and she was the palest I've ever seen her-you couldn't even see her lips.

The ER Dr. came back and told me her platelets were at 2, which is the lowest they have ever been.

She was so out of it.  She was limp in my arms, and there was nothing I could do.

I have never felt so helpless, and so afraid of what I saw.

As tears came down my face, Matt assured me she would be ok.

At this point I REALLY realized how sick our little Bella Mae was.

Up until this point, she has been energetic and her overall appearance has been mostly normal.

When they tell you how serious this disease is, and how she is high risk-

you believe them, but it's hard for it to sink in cause she acts "normal" most of the time.

I knew now what they were talking about.

Without transfusions and antibiotics, our little girl wouldn't be with us.

Once again, what a blessing to have modern day medicine...that we can call and order blood to be transfused.

They had ordered platelets and red blood so she could be transfused, but it would take 2-3 hrs. to arrive.

I wanted to stay with her, so Matt went back home to be with Ty.

I laid there will her all night, and she didn't sleep until 7am when they took the IV out of her hand.

Her blood pressure came up, her nose stopped bleeding, and she started getting color back.

I was so glad that everything went well with the transfusions, and that we could go home.

As I sat there and watched her sleep, holding her tiny little bandaged hand, I couldn't help but think of Christ.

How was Heavenly Father able to watch Christ suffer and die for all of us?

As I sat there and thought of this, and how hard it was just for me to see Bella last night,

I was overwhelmed with love and sympathy for my Heavenly Father, and I KNEW he KNEW how I felt.

He knew and Christ knew cause he personally felt it himself.

What a simple, beautiful glimpse of what the atonement is about.

I was fortunate to have Bella with me, safe and sound...and finally sleeping.

I don't know what else this little girl will have to go through,

but I know she is being watched over, protected, and loved by so many here and in Heaven.

How lucky I was to be with her, and how lucky I am to be her Mom.