#268 (Hopefully one of the last blood transfusions ever!)

My dad found cake to help me celebrate hopefully my last blood transfusion ... at least hopefully

in POTC where I have been getting my treatments for the past 20 years.

The staff here rocks...they have become my second family.

Lets do this...I'm ready!

TRALI - A Reaction to Transfusion

I had my second reaction with this blood transfusion, it was stopped short after my first unit of blood during my #234 transfusion. The doctors called it a TRALI - Transfusion Related Acute Lung Injury. It's very rare, the doctor only had seen one other reaction like this before in a cancer patient. Of course I get a reaction like this, how annoying.  If all goes well during my upcoming Bone Marrow Transplant, I won't have to worry about reactions anymore! (Please see my instagram and scroll back to April of 2022 for more information.)

Mia's 169th Blood Transfusion

Ever since Mia's first reaction to a blood product last

December, they pre-medicate her with a lot of

Benedryl ... which within 5 minutes makes 

her sleep during most of her infusion.

Sweet girl!

She woke up just in time to play HQ Trivia!

Looking good Mia, not you will be 

ready for Spring Break!

Thank you to the selfless people who donate blood

to keep Mia and others who need life saving transfusions

alive, we appreciate you so much!

Mia's 168th Blood Transfusion

There's not much to say...with Mia being pre-medicated due

to her first reaction to a blood product last December, she

sleeps all through her infusions now.

Talk about a nice benedryl nap.

We haven't been doing desferal for the month of January 

to see how her new medication Jadenu is doing as her oral

chelator. So Mia's  upcoming MRI results will be really 

interesting. As always, thank you so much to blood donors

who give Mia the chance at LIFE.

Mia's 165 - Reaction

Mia had to cut short her 165th transfusion due to her very

first reaction to a blood product. 

This has NEVER happened before...

so it was a shock and a little scary to say the least. 

She received her first unit just fine,

but as the other unit started...a little bit after that her

eyes got swollen and it looked like hives.

It started in her right eye and then moved to the left.

So sorry Mia.

We knew this could happen but didn't really expect it to.

No pics!

We were able to donate a bunch of toys to the hospital from Dad's

flag football tournament...so that was awesome!

Mia you are the bravest girl in the whole wide world that

I know. You must be strong because God gives his toughest battles

to His strongest soldiers.

Mia's 164th Blood Transfusion

Today is Mia’s 15 year anniversary of when we rushed her to the ER 

when she was 6 weeks old. The Tuesday before Thanksgiving she had her very

 1st blood transfusion with a hemaglobin of 2.4 - yikes! 

We are beyond THANKFUL for all the people that have donated blood

 to keep this sweet girl alive all these years. 

We have a Heart of Thankfulness for the gift of life.

Shirt by: Sweet T's

Thankful is understated.

Dr. P. - Who saved Mia's life. 

We love you and could never

say thank you enough.

15 years later...

Blessed with a surprise from big sis Alyssa and 

Lily!! These girls brought food, always a bonus!

If you could only see the scar tissue that has built up.

A huge THANK YOU to Love is in the BAG for

giving Mia a fabulous love bag filled with extra special goodies.

Blessed beyond measure and extra thankful this Thanksgiving.

Mia's 163rd Blood Transfusion

I hate how she has to have SO many pokes. The scar tissue

on her precious hands makes me sad. 

We tried a port once, which we never wanted to get, but it clotted...

because we don't go often enough to really have one.

Annoying.

Sweet Mia I pray one day you will be healed so you don't have to go through

all this. I know if not now, or on this earth, then for sure in heaven.

One thing that helps getting all those pokes is the toy closet. 

It's hard for older kids to get

excited about little kid toys...so Mia usually picks out a book.

Looking forward to feeling better...!!

Mia's Transfusion #162

Anddddd we're back!

She slept for 3 hours this morning...

Up and around...

Very thankful to be alive!

Mia's 161st Blood Transfusion

Poor sweet Mia. Her counts were SO low and her Dr. Appointment wasn't

even until the following Monday.

Just by the way she was acting, I knew she wasn't herself. 

While Mia slept the whole morning, we had a visit from:

www.hopekids.org

What a sweet letter from another family fighting for their

sons life...

Kindness and paying it forward for the win!

Thank you Hopekids for Mia's Amazon Gift Card

just in time for her birthday!

FINALLY feeling better after 2 units.

She never got out of the hospital bed because she was

so exhausted.

Once a year, Build a Bear comes to the hospital,

and Mia got a Bear and picked out an Army

outfit because she's tough!

- So are you Mia -

We had a nice surprise for lunch from 

Dad and Alyssa.

Then after a while it was time to go home!!

We couldn't be more grateful to the generous 

blood donors who keep Mia alive every 3 weeks.

What a gift of life.

No words could express my thankfulness!

160th Blood Transfusion

Mia sporting ASU!!

Already feeling better thanks to #160 -  which consists of 2 units of blood.

Thank you so much blood donors!

Mia's 159th Blood Transfusion

I cannot wait until someone finds a cure to DBA.

Until then, Mia will rely on the kindness of strangers to keep her alive.

Thanks Dad for driving Mia to the hospital!!

Sweet girl, feeling better already!

Oh gosh...Mia picked up her schedule for High School!!

Wait, what??!!!

Thank you to God for getting her this far in life, and of course

to all the blood donors who have helped as well.

Mia's 158th Blood Transfusion

Transfusion days are...long, tiring, but extremely reviving.

Each transfusion day guarantees Mia another 3 weeks

to live. She is a great reminder to Live Beautifully. 

(Just like her shirt says...from Sweet T's)

Thank you Mia for being a reminder to live joyfully even

though your circumstances are not what I wish for you.

If I could bottle up your contagious joy I would, because there are people

suffering who could use it. 

PLEASE take the time to donate blood if you can...currently from 

coast to coast there is a nation wide shortage of blood products that are

available on the shelves. Patients like Mia REQUIRE this blood to live. 

We cannot go buy her medicine at a pharmacy...her medicine is your 

blood that keeps her alive and it has to be donated from someone like you. 

The BEST part of this day was Mia being able to hang out 

with her friends. How sweet of them to visit her...they had the

best time just hanging out.

Checking out her IV pole...

So sweet.

I love hearing the laughter...especially in a hospital.

The girls got to go up to Sophie's Place and sing...

a little music therapy is good for the soul.

Thank you to Clare and Gianna for hanging out with Mia today...

Mia is so blessed to have friends like you.

Thank you God for selfless people that take the time to donate blood

so my sweet girl can live.