From waiting comes JOY

Its in the quiet moments after waiting that I continue to find joy in this journey.

The Joy of knowing others are holding me up in prayer when I can can't hold myself up
The joy and pleasure of praying for others
The privilege to stand in the gap for the needs and brokenness of my friends, loved ones, and strangers

The simple joy of a cup of a coffee delivered to my bedside

Sunshine out the window
The end of school (no more homework) and beginning of summer
and the promise that Joy comes in the morning

With my eyes fixed up and my mind focused on Joy,
The days get a little shorter, the evenings a bit more peaceful and I slowly begin to rest.

And its only then that I can begin to look to another day and know that I can do this!

End of Year Awards

School is nearly done for the year.

As always, there are end of year awards to attend and while Chemo 11 prevented me from being there in person, I was blessed by the littles teachers, school staff, and dear friends who made sure this Momma had pictures and videos of the special moments.

Lillian received the Character Award (student of the year for her class). Her teachers kind words were just the encouragement Lillian needed (her Momma too).
Lillian worked hard this year to overcome challenges in reading and to find Joy in the journey.
We are so proud of her hard work and perseverance toward success.

Cooper celebrated the end of kindergarten with snow cones, awards and big smiles for summer.

Look out first grade, here comes Cooper.


Its hard to believe another year is complete and next year will be the last year these two will be in the same building until High School.

Glad its summer and we can have lazy days by the pool, movie days, and lots of momma snuggles.

Pondering's from Rapunzel's tower: Waiting

My desire in writing this blog has been to be authentic and open handed with my journey. I have questioned on several occasions if I have "cheated" you or allowed my pride to hide the less glorious aspects of my illness.

And I have laid here these last few days pondering how to pull back the curtain a little further.

This has been my Chemo week ...

Days where I have no energy and can barely get out of bed
Hours slowly ticking by waiting for the next round of meds that might offer slight relief
Nights filled with paralyzing fear and anxiety
Moments that steal my breathe and the panic rests on my chest like the weight of an elephant.

I cry (a lot)
Then I apologize (for not being strong enough or able to endure it again)
and cry some more

And I wait
I wait for the feelings to pass
I wait for the symptoms to subside
I wait for relief
and I wait.

Chemo #11

Just another normal infusion day...

Except this day, my wish came true :)

Dory finally got her detour to Target.

For those that may not understand the significance of this let me explain...
One of my early questions to my doctor was "Can I drive myself to chemo... the answer was No"
Several weeks later as Rob was driving me to my infusion I shared that I understood why a person could not drive themselves to an infusion.
1. They would forget where they were supposed to be going and end up at a better place like Target (dory moment)
2. And even if  they did know where they were supposed to go, they would want to go anywhere that wasn't the hospital

But the detour was short and it was time to start the day.

After a normal doctors appointment it was time to hook up to the drips and begin the infusion process.
Due to scheduling, lunch was smack in the middle of the treatment.

Frozen cokes (always a favorite) have become my "cold' choice for my Doxy infusion and I always love corn dogs (even if they are from a gas station.

We finished in enough time to pick my mother in law up from the airport (she blessed me with a second Starbucks)

then a  quick stop to see Lillian in her Wax Museum (boy she was surprised)

 and then finally home. I was exhausted.

As many of you might see, my hair has begun to grow :) It is short and patchy in places but its a glimmer of Hope in this journey.
For now I will rest.

11 done, 1 to go :)

Piano Recitals

Another year of piano lessons is finished and we enjoyed listening to her perform in the Spring Recital.

Well done Lillian! We are so proud of you.

Happy Mothers Day

Love from this Momma's 3 Favorite Sparkles!

Mothers Day Tea

This little Sparkle was so sad to miss school (he has been home sick most of the week)and taking his Momma to the Mothers Day tea so he and Nana brought the Tea to Momma.

Cooper sang me the Mommy Song and we shared cake and punch while I looked at the pictures he drew and his favorite Momma list.

It was just what this Momma heart needed :)

Relay for Life

Each year the Sparkles (and Nana) participate in the Hendricks county's annual Relay for Life for the American Cancer Society. 
The Sparkles (Madison, Lillian, and Cooper) walk several laps in honor of those who have or had cancer.

This year is especially special, because they are walking for their Momma is fighting her battle with Hodgkins Lymphoma.

Each year Nana  purchases luminaries which will line the walkway of the Relay. Cooper was our outstanding decorator, honoring those in our family who have survived cancer (Aliza, Lee's mom, and my mom) and those who valiantly fought but lost their battle (my dad and Lee's sister Barb) 

The luminaries are distinguished by Survivor and In Memory but I would add a third category.... In Battle.

So to all the people who are currently battling cancer, to the brave survivors and to those we dearly miss  we honor and celebrate you, especially this weekend, pledging our continued support and prayers. 

Pastor's Hot Date Challenge

During a recent sermon series (Marriage Soundtrack) our lead pastor challenged the husbands in attendance to plan and go on a creative date with their wives and submit the details (and proof) to the never been used before email address myhotdate@tpcc.org. The church staff would later vote and the winning couple would receive an evening on the town as a prize.

For Rob and I (nearly 10 years of marriage) this challenge lead to a conversation which detoured down memory lane and the adventures we shared the two years leading up to our marriage. We quickly came to the conclusion that we didn't really "date" in the traditional sense... we adventured, we traveled, we went places, we marked things off our want to do list and made a lot of memories.

We joked about the definition of "creative" and shared ideas back and forth both trying to ignore the "elephant in the room" my cancer and the limitations and changes it has brought to our life.

Creative has a different meaning in this season of our life.
No trips or adventures, nothing too exhausting, careful of crowds and germs, plans that can be easily altered and nothing too far in the future.
I figured that the reality would be... Nothing creative right now, but some day soon.

Then Friday came...
and my husband blessed me with our creative date.

It wasn't Pinterest inspired.
It didn't fit the textbook definition of creative (relating to or involving the imagination or original ideas)
It wasn't out of the ordinary.
It wasn't something new or never tried before.

It was perfect and it was US.

My husband blessed with an evening of comfort.
He washed and rubbed my feet- allowing me to experience something I enjoy (foot massages) but in an environment that was safe and without concern for germs and risk of infections.

He provided an appetizer (which I always ask for at a restaurant- too impatient to wait to for the entrees).

And indulged my desire for "photo" memories

He chose a menu and adjusted the recipe to fit my ever changing dietary restrictions- focusing on food that I have enjoyed in the past and desiring to provide a meal that tasted good to me.

He served me

I enjoyed restaurant style food without having to leave the comfort of our home or worry about crowds, germs, or having to changing my clothes

He even decorated the table (who would have known that having fake flowers as your wedding bouquet would be a continued decoration and joy in the years to come).

We ate, we talked, and we enjoyed the leisure of a quiet meal in a comfortable place.

And then we cleaned up together and I enjoyed the normalcy of being my husband's helpmate and sharing the load which was another gift.

Finally, the evening ended with another Just Us Thing... we climbed in the convertible (a dozen years ago it would have been a motorcycle) and ended our date on a sweet note...

He knew me, he blessed me, and he loves me.

I am grateful for this challenge and thankful to be married to a man who knows me, my needs and my wants and who chooses to serve me.

Happy 5-teen Madison!

I can't believe that my eldest Sparkle is 15 (or 5-teen as she counted for so many years).

It was a simple celebration with her favorite foods (chicken parmesan and spaghetti) and some of her favorite people.

Then Friday night she had her Daddy Daughter celebration. 

They went Go-Karting

 Ate Dinner at Primate Brothers 

and ended the evening watching Guardians of the Galaxy 2

It was a night of celebrating who she is and who she is becoming.

We love you Moopers! Happiest of Birthdays!

Chemo #10

Everything went as planned.

A starbucks stop (not photographed), blood work, and 4 hours of treatment. 

I was blessed to pass the time with my friend, playing cards, drinking slurpees and reminiscing over the last 16 years of friendship.

A welcome distraction and joy :)

Just 2 more infusions to go!

Off to Chemo #10

From Rob:

Aliza has one month of treatments left! Three more infusions, including today's, and God willing, she will not have to think about chemotherapy for a long time. 

Infusion 9 gave us a chance to talk to Dr Azar and get some information regarding the CT Scan and Pulmonary Function Test (PFT) and the results were very encouraging... and for Aliza, a degree of disappointment. Firstly: the lymphnodes show a significant reduction in size. This means the chemotherapies are doing their job exactly as hoped. These remaining 2 cycles (starting two weeks ago) are intended to keep the pressure on any remnant cancerous cells because if even one single cell survives, then the cancer will return and further chemo treatments are not an option - Aliza would have to go to stem cell / bone marrow replacement treatments. So, the disappointment for Aliza came in the form that although the chemo is working, she has to continue to receive the infusions which results in some complicated mental battles. She's holding on and we'll carry on.  

Next: her breathing test (PFT) had good results. Aliza is not experiencing excessive damage to her lungs caused by the bleomycin as was the concern. It has some interesting side effects during the actual infusion (think elephant sitting on your chest and the nurses wanting to run an EKG), so she always has to ignore that one.  

So, Aliza is off to another treatment, number 10, and is eagerly anticipating receiving her final infusion on June 5th.  

The past two weeks have actually been "good". Her recovery following the infusion was pretty smooth and not nearly as up and down as at the beginning stages (a further indication that she is beating the cancer), she was able to go out to dinner the Friday following the infusion, 

and she attended the women's conference at our church this past weekend (the timing of which really couldn't have been better, so we are thankful for that).  

Thanks again for everyone's support. You all have made this journey much easier than first feared and I can't imagine the struggles people have who don't have a group of friends and family surrounding them. We certainly count ourselves as blessed. 

May the Force Be with You!

Happy May 4th!

Before you scroll to the pictures I must share the back story...
When we first shared with the Sparkles my diagnosis and the pending loss of my hair there was much discussion regarding "Momma's hat" and what my style would be.

They unanimously voted that a Princess Leia hat should be my signature and would go with everything. While I love my Sparkles I knew that I would need a few more options.
As time passed and it was clear that my scarves would be my signature I had not forgotten the request of my sparkles and the opportunity to add joy to the journey.

So this is how I greeted my Sparkles on Star Wars Day....

 Oh the giggles and the smiles and the Joy

 Darth Vader and his son :)

The girls agreed that it is funny and have Halloween plans in the making but prefer my scarves. Cooper however was elated and stated "I knew it, now you can wear it to church"

Needless to say it was a joyful day at Casa de Sparkman and a blessing in disguise ;)

Sleeping Kisses

Best way to wake upend best surprise to find on your phone :)

Chemo #9

This infusion started same as the others... 

A stop at Starbucks (though I did upgrade to a large :) 

Another stop, this time for a hotdog (I wanted a corn dog) after Rob realized that I had not eaten breakfast and chemo on an empty stomach is a No Go. 

Then checking into the hospital, bloodwork, and a doctors appointment. This was my first time seeing Dr. Azar since my CT scan and my first chance to discuss with him the results and next steps. 

I will pause here to thank everyone for being patient with me in this update and for not pushing or pressing for news. 

I have lived under the umbrella of "no news is good news" for some time and the brief email I received just before chemo #8 (CT looks like a good response. Continue same dose and plan) was enough for me until I would see my doctor 2 weeks later. I knew that this short and simple response would not be enough for many others (either they would celebrate that its Good news or they would ask questions that I would not have responses for) so I chose to not share the "hint" of what I may or may not know. 

As many of you have also read in Rob's update (I will repost if you have not) Dr. Azar is pleased with the progress I have made and all signs are pointing toward 12 chemo being sufficient. 

For some I realize you want me to be elated or excited about this this news and though I am thankful for the progress report that is all it is for me right now. From my initial meeting I knew that my treatment plan included 12 infusions, a progress CT scan and a final pet scan at the end to determine if additional treatment would be required. This is what I signed up for and although good reports along the way are promises for the future they are not "get out of jail free cards" or move ahead to the next step. 

I still have to complete the final infusions. I still have to endure the side effects and discomfort. And dear friends, its not easy. I know what to expect (or at least a good guess) and its hard to choose. I would rather go to Target or wander around the zoo (both I ask to do as we drive to the hospital and so far have yet to deter my driver ;)

 A heavy sense of fear has been lingering on the outskirts throughout this journey and the first set of good news brought the Fear even closer. 

Fear that remission is an actual reality and close

Fear that my cancer will and can come back 

Fear that I won't have the strength or endurance to fight again (or to finish the fight I am in)

Fear of things I have thought of and the things I haven't

For me this set of "good news" sent me spiraling. I felt exposed and anticipated the plethora of questions that I didn't have the energy to answer. It was all too much in one day (along with a lot of other things) and what I needed most was to rest. I needed a bit of time to get all the pieces together, to wrap my mind around this update and then to share the news in a way that allowed everyone to see the same Big Picture. 

As I have explained to my middle Sparkle, my journey is like the game of Candy Land. 

The goal is to reach King Candy. There are check points along the way (Gumdrop, and Grandma Brittle i.e. CT scans and breathing test) and the most beloved Queen Frostine. There are set backs (lose a turn i.e. delays in infusions or other hurdles to cross) and unexpected detours (like getting Plumpy when you nearly are at the top i.e. infections, hospital stays etc) but the no matter what the goal is the same. I have been blessed that when the "rules" of the game were explained in December that my game has not changed... I have had not set backs or delays in my infusions, I have followed the treatment plan as proposed and all things point to reaching the end in victory. 

But I can't celebrate yet... we are not there yet. 

So celebrate the good news with me, we are right on track. 

Send up prayers of thanksgiving and praise for how far we have come

We are right where we are supposed to be.