Mouth Surgery...Check

This little girl had surgery on her mouth today...and she is such a strong, brave, sweet little thing!

After she got the clogged salivary gland drained in January, they said if it came back they would need to remove it.

It came back, and I'm glad we finally got it removed.

It got to be really big, so big that it would push up her tongue.

The little cutie didn't even complain about it until the day before her surgery...and then she said "get it out of my mouth Mom"!

She was all smiles going into the hospital, she knew they were going to remove it-

but obviously had no idea how intense it would be.

She did so good, especially since she couldn't eat or drink anything till 12.

She was all smiles, with a few outbursts, and charming all the nurses & doctors as usual.

Surgery went well.  Dr. Smith came and told me that he removed the abscess that was blocking the gland 

and luckily he could do it all from the inside of her mouth.

Sometimes when it has gone really deep, they have to go in through the throat.

So we are lucky it was all through her mouth.

She is recovering and doing well.  It seems as though she is in less pain now than when she had it drained the first time.

Glad this is over and she is doing so well!

Really, 1 Month?

We came to clinic, and we don't need to be back for a MONTH!

I couldn't believe it when they told me, and it is still even weird to write it.

Bella's levels are still slowly rising, and her cyclosporine is still in the range it needs to be...

so there is no need to come in so often.

My first thought was-what are we gonna do with all our extra time?

Dr. Fair told me to try and remember what life was like before all of this, and to do that.

Easier said than done I think.

I'm sure we will figure it out, but for now...we are doing the "Happy Dance"!

2 week Break

Well Aunt Michelle is home, and Missionary Michelle brought miracles with her...

Chelle came with us to clinic, and Bella's levels are still rising, and her cyclosporine levels 

have remained stable for the last few weeks, so they said we don't have to come back for 2 weeks!

Two weeks doesnt sound like that long of a break, but for us it is an eternity!

Going to Primary's twice a week at least for the last 7 months gets tiring.

I am ready for that 2 week break!

Aunt Michelle is the sweetest, and Bella is completely smitten by her.

She tells everyone how this is her "Chelle"...its the cutest.

She was SO proud that she came to clinic, and loved showing her everything.

I couldn't be more grateful for the progress this little munchkin is making!

Good & Simple

The last few weeks have been so good, because it's been so simple.

Isabella is her happy, funny, loving self and I am trying not to take any of it for granted!

Her levels have all been going up slightly, and that's what they need to do...just keep going up.

We have had Easter Egg hunts, dates at the park, dress making, flower smelling, and quick clinic visits with Ty.

Life is good, and life is beautiful.

I see Bella enjoying herself each day, and it makes my heart wanna burst.

She is a light, and is loved everywhere she goes.

I still have people I run into telling me how they pray for her, and it's all I could ask for.  

These days seem to good to be true, but I will take them...one day at a time, 

just hanging out with my 2 bestest little friends.

Spring Break

I can't even put into words how wonderful it was to go to Sky Ranch as a family for Spring Break!

I feel SO blessed to be at the point that we are at, and to be able to go and enjoy just being together.

As we drove off, I was trying to take it ALL in, especially the little things.

Isabella's levels have just slowly risen the last few weeks, and continued to do that today before we left.

A few weeks ago, I had no idea if we would be in the hospital starting chemo & radiation for a BMT, or heading somewhere warm for Spring Break...

how GRATEFUL I am that we headed to someplace warm, happy & healthy!

We did so many fun things, but the funnest part was just doing nothing really big-together.

We swam, rode bikes, threw rocks, went to Zions (both Ty & Bella's 1st time), went on the razor, and just laid by the pool.

We did all the things that we haven't been able to do in a long time.

It's crazy how much we take for granted every single day.

The ability to just go places, to be around other people, to be free of hospitals, to not have restrictions...

to simply just leave town for a few days.

I needed this little family vacay, and so did everyone else!

It was perfection.

Dancing Again

Nothing makes Isabella more happy than to be dancing.

She is in her element, and she is really good at it!

When she wasn't able to go to dance class anymore, it broke my heart.

Every time we drive past the road the dance studio is on-she would ask me to go to dance.

I kept telling her that it was soon, not knowing when she would be able to go back.

Well today she went to class with one of her best friends Nora...

and it was a little glimpse of what I think heaven will be like.

It has been 5 months since she has gone, and I never knew when she would be able to go back.

Being there, watching her tiny little body dance was overwhelming.

I sat there and watched and tears streamed down my face, tears of pure happiness.

All I have wanted through this journey with Bella is for her to be happy and healthy...

and today she was both. I couldn't ask for more.

I don't take these moments for granted, they are miracles and I am grateful to experience them!

For Isabella to be doing so good, and to be doing what she loves, is truly a miracle.

I am trying to enjoy the moment, and I can say watching her dance today 

was one of the simplest, happiest moments of my life.

Oh how grateful I am, and how blessed we are to have her in our lives.

She is simply the best.  She is my light.  

Today was perfection!

There Will Be Miracles

I have seen miracles through this entire journey with Bella, but today I feel as though the biggest miracle of all has taken place.

She was given {1 month} to be transfusion independent in order for her not to need a BMT.

I remember being on the phone with Dr. Fair and hearing this, and knowing it could happen, 

but feeling doubt and fear...earlier that day she had gotten a platelet transfusion and had been every week prior.

Well that would be her last platelet transfusion for the next four weeks, and I can't even believe it as I'm writing it.

Somehow her little body has done exactly what it has needed to do, and we are at the point where we can actually say 

"no, she does NOT need a BMT right now".

Boy does that feel amazing!

So now we wait, and wait and see if her body can still respond to the point where she is in normal range,

and when they start weaning her off eventually-they can remain where they are.

I know that all of this is not by chance.

I know that the blessing she received by Matt and Pappa, along with the faith and prayers from those around her,

is what has made this miracle take place.

I am truly grateful for the priesthood power, and for a loving Heavenly Father that knows our hearts and our desires.

This has been such a life changing journey for me, and at the point I am at now, I am taking it all in-

and enjoying the "now", cause it is OH so good.

My heart and mind want to fight it sometimes, and it all seems too good to be true...

but I win that fight and let my soul be happy and thankful.

She is my everything.  She is what puts the smile on my face, and makes me want to dance.

To see her so happy and healthy is all I ever need and is all I have ever wanted.

Miracles happen, and through Christ anything is possible.

He is here for us, and we need to rely on him to get us through our toughest times.

I have felt his hand in all of this, and I never want to let it go.

I am stronger, she is stronger, and together we move on...

Happy Pants

Today was a great day at the clinic, probably the best day we have ever had here!

Bella woke up happy, and was so dang cute and sweet the whole time at her appointment.

One of her doctors, Dr. Fair, asked if Bella could "please wear her happy pants" the next time we came in...

on Tuesday when we went in she was kinda sassy and awnry (we went in on Tuesday this week instead of Monday).

So when I got her dressed today I told her that her pants I was putting on her were called her 

"happy pants"

She thought it was so funny, and kept singing "happy pants, happy pants".

When she saw Dr. Fair she automatically told him she had her "happy pants" on and did a little dancing while saying it...

it was THE cutest thing.

She was happy, giggling, joking around, and just overall being herself.

To top it all off, her levels came back and looked great!

Her RBC was pretty low, low enough that normally they would have transfused her,

but her RETIC (which shows if her body is making immature red blood cells) was SUPER high...

it was at 94, which is almost doubled from what it was the last Friday (55).

This shows us that her body is telling the bone marrow that it needs to produce more RBC's 

since her RBC is super low, and that's why it jumped so high-which is good.

Now her body just needs to keep them, and they need to mature into red blood cells.

We need to watch her carefully this weekend, but they are hopeful that her body will respond and she will be fine.

Her platelets were maintaining at 14, and her neutrifill count was up slightly again to .9.

Hearing all of this was so refreshing and just reassuring.

Monday will hit her (1 month) mark, and so far so good on her not needing any transfusions!

This little pink car was parked outside the clinic door when we left, and she HAD to have a ride...

we rode down the hallway, picked up some fruit snacks from the vending machine, and she couldn't have been happier in her "happy pants"!

These clinic visits have become fun for her, she feels comfortable and is happy to be there.

I have tried my hardest to make it that way for her, and I love seeing her smile while we are there.

I love seeing her interact with the doctors and nurses.

I love her little spirit and the brightness that she brings to everyone around her.

That combined with her "happy pants" is a recipe for perfection!

Love her.

She's 3

Today after clinic we made a pit stop by the SLC library and I snapped a few photos of my spunky 3 yr. old.

I have wanted to take pictures of her ever since her birthday (almost 3 months ago), and finally made it happen.

She has SO much spunk lately, along with attitude and sweetness...wrapped all in one.

Her expressions and dance moves kill me, and her hand flipped out when she walks is my favorite!

Her clinic appointment went well, she just got her cyclosporine level drawn and then we were out.

On Friday we will see what her CBC is...but so far so good on not needing a transfusion.

While we were there taking pictures, the most adorable little boy came up and started talking to her.

She would have nothing to do with him at first, UNTIL 

he asked her about her nail polish and told her he liked her shoes...I was dying!

They chased each other and payed, and in the end when he tried to hug her-she still wasn't having it.

I couldn't help but laugh and just enjoy the moment.

She perfects her dance moves, loves to sing, and laughs at her own jokes.

Three is a pretty cute age, and I love seeing her little personality develop!

Support from Friends

 What a difference it makes to have friends come to clinic!

Our good friends Beau and Isabel are here visiting from NY, and haven't seen Isabella since she was 6 months old.

The night before her friday clinic visit, Isabel texted me to see if we would want them to come with us to her apt.

I was so flattered and touched that they would want to get up SO early and come with us...

it is rare that other people come with me, so when they do it is such a treat!

I told Bella that morning that they would be coming with us, and she got all excited!

What a big difference it makes to have friends there with her...

she loves it, especially showing them things all around the hospital and clinic.

We made it all week without going in for a transfusion, and I was SO anxious to see what her levels would be!

(especially since we didn't get any numbers on Monday for the first time)

Dr. Engel was there and came and told us how her levels were still rising, and even her platelets had gone up!

From the last Friday they were 11, and they had gone up to 17...which has never happened with platelets.

Her Retic had gone from 44 up to 55, the highest it has been!

It was such a relief and so rejuvenating to hear all of that.

We were in and out so quick, and to top it off Bella was in an extra good mood with her friends there.

We left and went to City Creek to meet Daddy for lunch, and to the "Disneyland Store" (what Bella calls it) where she found THE most perfect light-up Cinderella Shoes.

It was an amazing day with amazing friends. 

It was crazy to sit there with Beau whom we met 9 yrs. ago in NJ.

Who would have thought we would be sitting there all these years later, in a doctors office, with my daughter, going through what we have gone through...

Not me. But how grateful I am for him and Isabel and their friendship & kindness that day!

Let's hope we can just keep this record going with no transfusions...I just can barely believe it.

Once again, I feel soooo blessed!

St. Patricks Day Fun

Well we ended up going into clinic today because Bella's Cyclosporine level was really high on Friday night.

It was a quick visit, and a surprise to me when they said they would ONLY be taking her

Cyclosporine level and NOT her CBC (complete blood count)!

We have never not known her levels when leaving the clinic, and it was a weird feeling...that's for sure.

As I sat there, I kinda had anxiety-I felt a level of uncertainty and it was weird.

One of the nurses Jess said to me,

" Tiff, just go home and enjoy your day, she's not bleeding so just don't worry about it!"

As soon as she said that, I felt so much better.

I had planned a little St. Patricks Day party today for Bella and all her little girlfriends,

and I decided we would go home, party, and just enjoy our day!

Bella was SO excited to have all her friends over, it couldn't come soon enough.

We made rainbow necklaces, ate yummy green food, and had a scavenger hunt to find the "gold".

We are "lucky" today to not have gotten a transfusion, and to just come home and live a "normal" life.

We will see how this weeks go, and just hope and have faith that her levels will maintain.

I am definitely going outside my comfort zone doing this, and it feels kinda good!

Good Advice

Today at Isabella's clinic visit, I got some good advice from Dr. Engel...

he said, "for the most part, most of us get too excited about the highs, and too sad about the lows-

when we should just try and stay in the middle."

I felt like this was such good advice.

I have been on such an emotional roller coaster over the past few months, 

and especially over the last few weeks as her levels have gone up and then down.

Today she hit another record high for her...

her RETIC went from 9.6 on Monday to 46.3 today!

The RETIC shows us that her body is responding and making immature red blood cells.

That is the highest its ever been, and the highest its ever jumped in one week.

Her Red Blood Count also went up slightly, which is awesome.

It is actually in the "normal" range, which it hasn't been without a transfusion.

Her ANC that was highest it's been on Monday went down slightly from .9 to .6.

And her Platelets are low at 11, but they didn't transfuse her today because they wanna see what her body will do without one.

So overall it was GREAT news today.

I am definitely taking it all, and enjoying the good news for today.

I KNOW how fast these numbers can change, and I KNOW how my high can go to a quick low.

So I am def grateful, but not getting my hopes up or getting too excited.

Obviously her little body is responding, and I couldn't be happier about that.

For how long will it respond?  That we don't know, and that's why we take it day by day.

Dr. Engel also told me how as doctors they are told to not treat/look at numbers, but to treat symptoms.

I really liked that as well, and that's what we are doing with Bella from here on out...

we aren't transfusing her unless she is showing physical symptoms.

I am nervous and excited to see how this goes...and only time will tell how it turns out.

As we left the hospital in her "blanket dress" that she designed

(wearing only her diaper and boots again-too many potty accidents than I would like)

I told Bella how her levels were up, and she put her hands together over her mouth and said

"Aaaah, my levels are up? Oh, that's great Mom!"

My heart melted.  She is just doing so good right now, and I don't want to take it for granted.

I told her we needed to thank Heavenly Father for helping her, and she agreed.

The way I feel today is simply "blessed".

Blessed to have a happy Bella, and blessed that as of now her body is doing what it needs to be doing.

I couldn't ask for more.

I'll Take The Baby Steps

These two....well, they are two peas in a little pod lately.

Every day I pick up Ty from school he asks:

"When did you lay Bella down?  Is she gonna be awake soon?"

They have become the best of friends...

which means they fight one minute and love the next.

Together they will set the world on fire, I can promise you that!

I took Isabella into the clinic on Monday since her Cyclosporine level was high on Friday,

and after the weekend I didn't know what to expect.

As I sat there and waited, I couldn't help but run all the different scenarios in my head.

As Brittany (our nurse who we know) came and told me her ANC was .9, I couldn't believe it!

It had dropped dramatically on Friday from .7 to .3

It hadn't been dropping like the other levels, so when it dropped that much I was heart broken.

.9 Really?  That is the HIGHEST it has ever been!

I felt so, so blessed.

I was amazed, and so relieved.

Her platelets and red blood had dropped, but not as much as I was expecting.

Her platelets went from 58 to 29 over the weekend.

Usually by Monday she is in the lower teens.

So she didn't get a transfusion, which is what needs to keep happening.

After attempts to get a urine sample (which ended up with pooh in her pants), 

a long story that I wont go into details about-

we headed home with smiles on our faces.

I could not WAIT to tell Tyler the good news...he prays for her and worries about her every single day.

When he got in the car I told him that her levels started to go up again, he was SO excited!

I could see the love and excitement on his sweet little perfect face.

This good news is simple, and small.  

But I will take the small even if it's for a day, it feels so good.

At least they are baby steps in the right direction!

So we are praying and having faith that they will continue to rise.

I am one happy Momma, I can't stop smiling...which feels nice!

Daddy and His Princess

There isn't anything more pure than Matt's love for Isabella.

She has her Daddy's heart, and the love between the two of them is equal.

Matt surprised Bella with tickets to "Disney Princesses on Ice"...

along with a new Ariel Dress (that sings and lights up).

Even though she shouldn't be in large groups of people like that, we felt like that was something we

would go out on a limb for.  Sometimes you need a day of "normalcy", and it was a good day to have that.

She was in HEAVEN.

One day when she's older she will really understand how much her Dad truly loves her.

He makes her his first priority.  He puts her to bed every single night (upon her request)...it's the sweetest.

He would do anything and everything for her, and all he wants is for her to be healed.

I love seeing their relationship.  I love the pureness of it.  I love them both so much.

A princess never had it so good!

Show Us What You Got

At our appointment on Friday, we left with a lot of changes.

Bella's levels had dropped even more, and even her ANC had dropped which hadn't in the last 2 weeks.

Her doctors have decided to take her off her 2 antibiotics, since they can effect her levels somewhat,

and they want to give her body every chance to make more blood.

It was important that she was on the antibiotics for the first 3 months, but isn't as critical now.

They have also decided to NOT transfuse her unless she is showing physical signs (like excessive nose bleeds, etc).

They said at this point (her 3 month mark) her body should be able to at lease maintain itself and not need transfusions.

We have been helping her body by giving transfusions, which ultimately can make the body lazy and not do it's job.

So for the next four weeks as we wait and see what her levels do, we will not transfuse her on a regular basis-unless she really needs it.
So she is going to be able to "Show Us What You Got".

We also will not need to go in on Mondays unless her Cyclosporine levels need altering...which is nice!

If that can stay between 200-300, we wont need to drive to Primary's, and we can do a CBC at AF Hospital.

Her levels were really high Friday night, so unfortunately we will need to go there this Monday.

Having these small changes actually make a huge difference!

Two less medications to convince her to take, one less trip to SL each week, and possibly no transfusions on a weekly basis...

make our lives much less crazy!

Tonight we all sat and watched a movie in our bed, and while we watched Ty had a little notebook

Uncle Craigy had given him while he babysat him.

He wrote a little note, stuck it under my pillow, and told me that I had to leave it there in order for it to come true.

When I read this sweet note, I couldn't help but cry.

It was THE sweetest, most sincere note that a brother could ever write for his sister.

I will keep it forever.  I will cherish it and his love for Bella always.  He is simply the best.

What it means to say:

"All I want is Bella will feel better"

Love him.

Just 1 Month

The last week and a half has been surreal, as we have seen Bella's levels continue to drop.

Matt took her to her Monday Clinic Apt. and her retic had dropped from 18.5 to 13-
making it where it was from the beginning before they started to go up.

On Sunday I got up and went to a different ward so both of us could go to church that day-Matt had stayed home with Bella the previous week, so it was my turn this week.

I needed some spiritual uplifting, and I needed to show my Heavenly Father that I needed him,

 and to renew my covenants with him.  It was important to me.

After sacrament I went to my car and I was overwhelmed.

I told my Heavenly Father how hard this was for me, and how I didn't know how this would turn out,

but I had faith in him and what he knew what was best for Isabella.

I asked him, I begged him, that no matter what was to happen-

to just PLEASE give me the strength (mentally & physically) to take it all on.

Some days I feel as though I can conquer this journey with her,

and some days I feel like I am weak, and that it is all just too much- especially thinking of her going through a BMT.

I know he heard my prayer, I felt him.  

I felt so much lighter and renewed, and I felt the Spirit so strong.

How lucky I was to feel such peace and comfort sitting in my car, once again trying to figure my emotions and feelings.

When Monday came and her levels were still low, I took it in stride.

Matt and I both felt like Bella needed another blessing, and felt like we should go to the temple.

Late Monday night Dr. Fair called and told me how he had talked with Dr. Pulcifer (the BM specialist),

and that after looking at her trends, he wanted to give Bella 1 more month to respond.

This would put her at 4 months from when she started the immunosupression.

He said how some children can be "late bloomers" and it can take their bodies more time to respond,

and even though her levels were continually dropping-they had responded and they could still respond more.

He said how in 1 Month she would need to be transfusion independent in order to not do a transplant.

Her platelets will need to remain at at least 20, and her red blood count at 7.

These are BIG improvements in a short amount of time, but can be done.

After talking to him I felt better, even more calm.

I liked that Dr. Pulcifer still had faith that her body could respond.

I also had some closure in knowing we have a time frame, and mentally I can prepare more.

Matt and I both knew that a blessing was definitely needed, not only for Bella, but for our whole family.

Tuesday night we headed to Nanna & Pappa's and they babysat the kiddos while we went to the temple.

I knew that we both would feel peace and comfort there, and that sounded soo good!

Before we went into to the temple we sat and talked in the car.

Matt explained to me how hard this has been on him, but he needed to use the Priesthood to bless Bella, and that through that power-she could be healed.

I felt the peace in that, and I knew she could be healed as well.

The temple was refreshing, and it stood out to me how all our covenants we make there

are through our faithfulness. We headed back and I was excited for us all to receive blessings.

Before we started the blessings, Pappa talked to us about the blessings and how it usually depends on

whoever is receiving the blessing to have the Faith that it will work.

In this case with Bella being so young, the Faith depended on us.

If we have the Faith in the Priesthood, she can be and will be healed.

This was EXACTLY what Matt had felt and had explained to me.

Tears came to my eyes, and the Spirit filled the room.

I felt overwhelmed by how grateful I was for the Gospel and the POWER of the Priesthood.

We all received blessings, and we all left feeling renewed and peaceful. 

I don't know what will happen over these next 4 weeks, just like this whole journey it is a waiting game.

But I DO know that through our faithfulness, Bella WILL be healed...

wether that is through this treatment, or through a BMT, she will be ok and she will be healed.

I have to do my part, and I have to remind myself daily that if it does come down to a transplant-

how lucky we are that there IS a second option and a cure for this.

I mentally am preparing for it all, and I am trying my hardest to treasure these four weeks with her

exactly the way she is...happy and just herself!

This next month is life changing.

This whole journey has been life changing.

I look at Bellas sweet little face each day, and I am overwhelmed with love and joy just looking at her.

She is SO strong, and brave.

She brings light to everyone that is around her.

She takes everything in stride and goes on as if nothing ever happened.

I love her more than I ever thought I could love, and I would go through a million transplants for her if that is what she needed.

I simply need her, and I will do everything I can to make this journey easier for her!

It's OK to be sad

I sat in my car today after Isabella's Friday clinic visit and I just cried.

I cried because I was sad, heartbroken after hearing that her levels were decreased even more.

As I sat there in the car crying, I realized something...

I wasn't mad, I wasn't frustrated, I wasn't loosing my faith that the treatment could still work, 

I wasn't giving up on her tiny little body to fight, I wasn't confused...

I was simply sad, and that was OK.

I have protected myself and especially my heart during all of this.

I protect it because I have experienced first hand how quickly it can all change.

I remember celebrating Craig's birthday, Bella was happy and appeared to be fine.

After the party was over and it was time for bed, she got a nose bleed which ended up

being a night in the ER and one of THE scariest nights of my life.

I feel like I needed to remind myself that feeling sad isn't giving up.

Feeling sad is a normal reaction when you are going through hard times.

This journey has by far been the hardest trial I have ever gone through.

Having her levels going up for almost 3 weeks was a fresh breath of air.

Maybe that's why they went up, to give us all a little light.

Maybe they will start to go up again, I don't know-and that's the hardest part.

So I continue to have faith.

I focus on each day, and I take it one day at a time.

Today it was hard, and feeling sad felt good.

I know that each day with Bella home and healthy is a good day.

So we wait some more, and we see what each day brings.

Her doctors will talk to the BM Transplant team and see what they think.

Dr. Engle thinks her body deserves more time to see what it can do,

especially since she took longer to respond in the first place.

We keep going, we keep praying, and we know that tomorrow can be a brighter day!

When there are Ups, there will be Downs

I have learned in all this, you NEVER know what to expect.

Every day is different, every day can bring new challenges.

We have had an awesome couple weeks, and I have tried to appreciate them and take them all in.

Today at her Monday Clinic visit to check her levels, we found out that her Retic levels went down.

They have consistently been raising for the last 3 weeks, and then today they had decreased 6 points.

I felt so confused and sad, I was not expecting that at all.

Her platelets had dropped from 20 to 8 over the weekend (which was normal), so she got a transfusion.

Her neutrophil count slightly increased from .6 to .7-which was good.

Dr. Fair said that the levels can do that, and it's not great-but it doesn't mean they won't continue to rise.

I have not wanted to get too excited about her levels rising, simply to guard my heart incase it doesn't end up working.

I have also wanted to shout it from the rooftops cause I am so excited it IS working.

I feel as though it is a huge blessing, and not accepting it doesn't show my appreciation for the blessings.

So I have been torn telling people...and this reason is why.  You never know what to expect.

I do have Faith, I have Faith in that what needs to happen will happen.

I know Heavenly Father loves Bella more than I realize, and that he will help her.

I know that these low moments make us stronger, make us appreciate the good, and make us turn to him.

So I am putting my Faith in his timing, and I am simply going to try and do my part the best that I can.

I look at her bright blue eyes and that cheesy little smile and I melt.

I want her to be healthy, and I want her to continue to be happy.

I will anxiously await to see what her levels are on Friday...and I might go crazy waiting!

Glowing

 Today Matt and I were able to go with our ward to Ward Temple Night, and I will never forget it.

I knew I would feel peace and comfort, but I had no idea how much I would take from going.

I know without a shadow of a doubt that prayer is real.

I know that every prayer is heard, and they bring miracles.

I literally felt this and have a testimony of it.

I know that Isabella's bone marrow will work perfectly...

either in this life or in the next, she will be made whole.

I know that when we do our part, God will do his and never let us feel alone.

I know Christ lives and that he loves us.

As I go through this journey there are times I am scared, 

and tonight at the temple I felt complete comfort...it was amazing!

Grateful that I can go down the street and feel such peace & comfort.

"Breath Deeply & Appreciate the Moment"

I repeated these words today in my head while Bella and I had a picnic for lunch.

We were at clinic and found out that she would need a red blood cell transfusion,

so while we waited for the blood to arrive, we decided to eat lunch outside in the amazing weather!

As we were walking to get our lunch, this huge sign was next door.

I sat there and read it and felt like I need to do just this...

and enjoy this beautiful day with my Beautiful Bella.

It's so easy to get discouraged at times, especially while at the clinic and getting transfusions.

They are long days, emotionally and physically.

Our days start at 6:30 AM and don't get home till about 5:30 PM.

By the time we reach home, all I want to do is sleep.

So today I am focusing on the fact that her levels are still rising.

I am appreciating eating lunch outside and not in the hospital.

I am appreciating a daughter who makes my whole life light up...

I am appreciating Isabella Mae.

L.O.V.E for my Mini Valentine

This little L.O.V.E  of mine had my heart as I sat there and watched her hand out her

Valentines to all her friends at the clinic today...

She would grab one from her bag and say in her cute little voice

"Happy Valentines Day"!

They all melted, and so did I.

She is so sweet, so loving, and some of her best friends work at the clinic.

This week I was SO curious to see how her levels would be, and I was hoping they would be up again.

They were, and they even increased more than they did last week!

I couldn't have asked for a better Valentines Day...

being with my little mini Valentine, and hearing such great news!

Sassy Pants

Bella was my little sidekick the other day while I went and took some pictures of a friend-

and I couldn't help but snap some pictures of her and all her sass!

I feel like the last week or so Bella has been acting more like herself-before all of this craziness began.

I don't know if it is all in my head, but I feel like she is more outgoing, funny, sassy, and just overall happy.

She would always dress up in her Princess costumes and dance outfits before she was diagnosed,

and the last few months she hasn't really liked to dress up much.

The last week or so she has started wearing them more...which is something simple but big in my eyes.

People that know her or meet her always say she has "sass".  I would agree.

This tiny little body has SO much sass, and I love it!

I feel like it makes her get through all these hard times, and keeps us laughing along the way.

So I will take the sass, I will take it any day of the week.

I am so glad I am seeing her become more comfortable and trusting.

I am grateful to have her with me each day and to see how amazing and tolerant she is to all this.

I simply love my sassy little munchkin!

Levels Are UP!

Today I am excited and feel EXTREMELY blessed!

I took Bella in for her Friday Clinic appointment, it was my first time back since Matt gave me a break.

She wasn't very happy, she went to bed late, and she was not feelin the love...

They drew her blood and we waited for the results.

I have realized that through this whole journey I protect myself, especially my heart.

I know that nothing is certain in all of this, and even though we have seen miracles and glimpses 

that this treatment is working-I don't want to be let down if that's not what's in store for the future.

So today I didn't expect anything great with her levels, I just was hoping that they would be rising.

Jessica, the nurse who always accesses Bella's port, came in with the lab results and said smiling

"guess what, her levels are UP!"

I was shocked, ecstatic, emotional, and just in awe.

I sat there and cried as she read the numbers to me.  So much stress and worry felt like it was melting off of me.

Her platelets were at 98!

They have never been that high, they were double from the previous week, and tripled from what they normally are!

Her red blood count was at 26 which is low but she hasn't had a transfusion in 4 weeks (longest she's ever gone).

Her neutrafil count (white count) was at .4, and it has been at 0...which is very low and dangerous.

So overall she has gone up, and her bone marrow is starting to produce it's own cells!

Dr. Fair and Dr. Engle were both excited and surprised.  Dr. Engles reaction was priceless-I'll never forget it.

Bella has been on this treatment for almost 9 weeks, and since it can start showing progress at 6 months-I think everyone was hopeful for it to still work, but being realistic as well.

I'll never forget Doug telling me how some kids bodies just take longer to respond than others...

when he said that it kind of pierced my soul.

Bella has always done things on her own time, even when she was born-she came and she came quick!

I was reminded by her doctors that this is great, but this does not mean she is out of the woods yet.

Her numbers have to get to a point where she is transfusion-independant.

At that point they will not do a bone marrow transplant.

So we wait over the next three weeks and see what they do...and hopefully they keep rising.

If we get to 3 months and they are not quite high enough, but they are still progressing well-

they will most likely give her 1 more month to fully respond.

I don't know what the future holds, I don't know how she is going to keep responding,

but I do know that this has given me strength, hope, and even more faith.

I know that Heavenly Father has a plan for her, and for our entire family.

I know that he loves her more than I can imagine...and I have seen it through this whole entire journey.

I will keep praying that she can fully respond, but I also know that she is in his hands-and those hands wont let her go!

I am truly grateful and overwhelmed by today, and will never forget the feeling of pure joy I felt for her!

Can She Catch A Break?

The last two weeks I have been able to breath a little & take a break from taking Bella to clinic.

Matt has offered to take her and give me a break, and it's been SO nice!

We have started remodeling the house, and it's been crazy around here-staying at 3 different places while its done.

So when Matt took Bella to clinic on January 31st, her platelets were up slightly...

usually by Friday they are in the low 30's, and they were at 41!

Dr. Engle was happy they were up a bit, but for some reason Matt thought they were higher 

because she got a transfusion on Tuesday (not Monday) that week.

She did get a transfusion on Monday (Tuesday was the week before), so they were up a bit!

Monday rolled around (Feb. 3rd) and she was scheduled to have surgery on her mouth.

She had a clogged salivary gland underneath her tongue that had gotten bigger and bigger 

to the point that it was making her tongue stick up and was changing the way she talked.

She got a platelet transfusion that Monday-her platelets were 13.

She still didn't need a red blood cell transfusion which was nice...

the hard part was for Matt waiting for the surgery that wasn't till 5pm with a tired little, hungry girl.

She did well with the surgery, and they said she would be in pain but Tylenol would help her.

Well that night it was rough.  She got a fever in the middle of the night, and was in a lot of pain from her mouth.

When she has a fever we can't give her Tylenol cause it could mask a high fever which could mean infection.

Our thermometer wasn't being accurate at all, so I went to good old trusty Walmart at 4am to get a new one.

Luckily her fever didn't go over 99 for over two hours, so we were finally able to give her Tylenol for the pain.

She was in our bed all night, just crying off and on cause the pain.

I laid there and thought "when is this little girl gonna catch a break?"

Her poor little body is constantly dealing with something, and she is such a trooper every time.

I'm hoping this week she can recover quickly and Friday her levels will be even better!

Bella Turns 3

The movie "Frozen" will always remind me of this time in our lives.

It came out in the middle of all this, and it was the first thing we took Bella out to do-and she LOVED it!

(we took her at 10:45 in the morning, and there were only 3 other people in the whole theater).

It is by far Isabella's FAVORITE movie, there isn't an hour that goes by without her singing a song from it.

We listen to the sound track every time we are in the car, especially going to clinic twice a week...

(that's at least 4 hours of Frozen every week)

So for her party this year, it easily went from a "Tea Party" to a "Frozen Party"!

It's all she has talked about for the last month and a half.

She invited everyone she knows, and everything she sees has to do with her party.

The day could not have been more perfect for this little princess...

she woke up to me decorating and she was SO happy!

She said to me "My Frozen Party Mom? It's sooo beautiful"!

She helped me with all the little details, and couldn't stop smiling.

Tyler sang "Happy Birthday" to her, and I could have melted.

I wanted this party to be all that she hoped and thought it would be...

I've never enjoyed throwing a party more than this one.

I miss party planning, and so to be able to plan a party for my sweet girl was SO enjoyable-

every single detail was for her and things she loves.

Bella's days consist mostly of being at home or being at the clinic.

She has play dates with her little friends as long as everyone is healthy,

but other than that she doesn't get out and do things that most 3 year olds get to do.

Today all her little girlfriends got to come, and she was genuinely SO happy.

Every time the doorbell rang, she would run to the door and couldn't wait to show them everything!

They ate lunch, lots of treats, played an Olaf game, opened presents, and ate popcorn while they watched Frozen...

(thank you Daddy for downloading the movie haha)

By the time they all left, she was exhausted.

She kept thanking us for her party, and loved every single second of it.

I just sat with her on the ground and held her, and was so grateful that this little girl could have a 3rd birthday.

How blessed we are to have her here with us, and for her to be able to enjoy things like this!

I've never wanted someone to feel more loved and thought of.

She is such a trooper each day taking her medicine, doing oral care on her gums, getting her levels checked, getting transfusions...so I just wanted today to be different and special~and it was!

I can't believe she is three.

I can't believe she is so tough when she needs to be,

yet so soft and loving to everyone that she meets.

She loves to tease, make jokes, dance, and sing at the top of her lungs.

She melts hearts, and leaves you wanting more.

I don't know how I got so lucky being her Mom, but I am grateful for it every single day I have with her

...even the hard days.

My Isabella Mae, here's to three more years.

I can't wait to see you grow and become even more beautiful than you are today.

I love you munchkin, Happiest of Birthdays!

Birthday Clinic

Isabella was so excited to go to clinic today and tell everyone how her birthday party is tomorrow!

She has been telling everyone about her "Frozen Party" for days, even showing them her invitation.

Everyone was so sweet, and made such a big deal about it.

She was so happy, and it was so nice to see her real personality come out!

Todays visit was definitely less crazy-which was nice after last week.

As we were leaving, Bella invited nurse Brittany and Dr. Fair to her party...I guess they are her favorites.

Gosh, I just love when she is her happy, sweet self.

Can't wait for her party either!

Brothers & Bone Marrow

Tyler got to come to Isabella's clinic appointment today cause he didn't have school, 

and I was too late to find a babysitter.

Bella was beyond happy that Ty could come with her, from the moment I woke her up and 

she knew he was coming-she was in a better mood than normal.

I made sure to make it a big deal that Ty got to come see "the clinic" and all of her friends there.

I wanted her to feel special, and I wanted Ty to know he was lucky to be able to come.

We got there and she automatically started showing him the fish, elevators, play area, anything 

and everything she could point out-it was SO cute!

Once we got to the clinic they told me Ty would have to go down to the kids area to play, 

cause siblings aren't allowed in the clinic.

I knew this was the rule, but since I didn't have an option I just thought they would let him come in.

Before we went down all the nurses and Dr. Fair got to meet Ty and were all so nice to him...

Bella would say "this is my Ty Ty"...it was so sweet.

Ty was sad at first that he wouldn't be able to stay with her, 

but as soon as he saw the kids area he was stoked!

Dr. Fair came in and said how we needed to start talking about a possible Bone Marrow Transplant

if her levels didn't started rising in the next 6 weeks.

As of now, we haven't seen any increase in her levels and she has now been on the 

immuno-supressants for 6 weeks.  

At this point we could start seeing a change.  

From week 6  to week 12 is when they analyze it and see if the treatment is working.

Some kids take longer for their bodies to respond, and some start changing at 6 weeks.

So since she hasn't increased doesn't' mean she isn't going to, but we need to start planning ahead incase she does need a BMT.

As Doug said this to me, my heart started racing and my stomach was sick.

Just hearing and thinking about a BMT is hard, and I wasn't ready to hear that.

They want to start the process of finding a matched donor because it can take a couple months to find one.

That way if she does end up needing one, it will all be in place and we wont have to wait longer.

As I sat there and listened, it was surreal.  I was definitely emotional, 

and started fearing that it would have to happen.

I know that she has time to respond, and I know that we felt right about doing this treatment, and that's what I need to focus on right now.

I know that Heavenly Father has a plan for her, and I know I need to trust in him and his timing.

It is hard though.  It is overwhelming, and it terrifies me.

These next few weeks and what happens can make such a big difference in her life.
I have never wanted something to happen so bad in my life.

I wasn't expecting to take that all in today.

I'm glad Bella had Ty to make her more comfortable.  

As if hearing all that wasn't hard enough, as we were waiting for her lab results to come back,

I gave her her medicine to take, and as soon as she took the "spicy" one, she threw up all over.

As I was cleaning up the mess, I got a phone call saying that Tyler's time was up and I needed to come get him from downstairs.

When it rains it pours.  I ran down and got Ty, came back up and had to wait for more medicine cause she has to have it everyday at a certain time.

They both started getting hungry, Bella was done being at the clinic, and she still had to be de-accessed.

I just sat there and watched them, and realized how different our lives have become.

I was grateful to have them both with me there, and I am so grateful they have each other.

What a day to remember.