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. 

Time to Pause...

I noticed in the early days of my diagnosis that there was a common theme of cancer blogs trickling off mid treatment. I was quick to assume that when the going got tough often corresponded a drop in updates and posts. Mid treatment is when the pictures are less flattering, when the side effects are no longer easy to hide and the reality sets. I don't blame them for not wanting to sharing those parts yet I felt a stirring in my heart I committed in those moments to pray for those on this journey and that I would be press on- maintaining my promise to share the good, the bad and the ugly of this journey and write authentic posts even when it was hard.

But that was an easy promise to make in those early days and I was too naive to understand the Bigger picture or the other side of the coin.

In those early days I tired quickly but I also rallied
My mind was cloudy but there were clear days
I often laughed and sometimes cried
And it was easy to seek Joy when the moments got tough.

But the early days are gone, and half way is past, and as I crest toward 75% treatment completion I must admit that I am struggling.

I am still quick to tire but even slower to rally
My limitations are daily not weekly
My mind is perpetually cloudy
I cry more then I laugh
and Fear and Anxiety lurk just around every the corner

I am deeply entrenched in the "chemo trough" as my correspondent doctor from afar so eloquently phrased it. And in the darkness of the trough its easy to feel the I Can't and the No More. Its easy to feel the pressure to continue what I have or think I should be doing at this point. Its discouraging to admit that the closer to healing the more that is taken away. Even if for only a season, the season feels  long.

As I have battled the reality and the changes I need to make, I have cried over the loss of more and the loneliness of the journey and for a moment believe that no one could understand

But leave it to Hallmark and my ever growing and loving circle of support to know what I need to hear:



I have read these words over and over this week
I have prayed and cried and maybe even begged a little
and then I have rested... and accepted... and Leaned In to this next step.

And let me say, its really hard.
Its hard to let go of more.
Its hard to break habits (especially good ones).
Its hard to not do what I have always done
Its hard to not make lists or cross things off
Its hard to say No to good things
Its hard to choose and prioritize
Its hard to have limits
and its really hard to have cancer.

So my dear friends, please know that my silence does not mean I am not fighting or that bad news has come. My silence does not mean that I don't need you or that I don't read your messages, cards, emails and text.
My silence is only a reflection of my weariness and that all of my energy is being spent to heal and to love my husband and Sparkles.

Please keep praying, keep encouraging, keep holding me up.
Stand in the Gap for me in the moments that I can't stand for myself.

I love you all :)

Blog Updates

After several comments and a bit of constructive feedback I thought I should write a brief disclaimer regarding my blog updates.

As you may have noticed, there is often a lull between post (and yes I do go back and post date updates to correspond with when the event actually happened and not when I finally posted the pictures). This lull is due entirely to the effects of chemo and when the "haze" lifts.
It is very difficult to post with a foggy mind and while in the beginning the fog usually lifted around days 8-10 post infusion the residue of the haze is staying longer and longer.

 I refer to this new phase as Dory (hence my new amazing coffee mug). These Dory moments are a part of my daily life and become more frequent especially when I am tired,anxious, afraid, over stimulated, fearful, and before or after an infusion.

A blog post can take me anywhere from 1-3 hours to type and post. This is not me seeking perfection but is just me trying to find clarity in my thoughts and to correct my typos and auto corrections (some times quite exciting as I am not sure if the auto correct is an error or what I really meant).

Please know that I want to blog and I am open to sharing any and all of my journey.
Be patient and forgiving of my typos, sudden shifts in formatting, and my misuse of then and than (yup still can't always get that one right).

I am trying but its getting harder.

I so appreciate all of you for checking in and wanting to know how I am doing and where we are in the journey and please know that no news is good news and silence is always an opportunity for encouragement and prayer.

A loved ones view

It is easy to forget that I am not the only one weathering this storm. 

Here is a email update sent by a loved one to their circle of support. May it offer you more insight then I might or a different view of the road to healing. 

• Aliza had her 8th infusion on Monday, April 10th.  Her 9th is scheduled for this Monday, April 24th.
• This was a bit different for me as I was home and able to be closer to the action.  This is what I saw...
• Monday (infusion day)... everything goes as usual in terms of the drugs and the process... Aliza comes home exhausted and looking very pale.
• Tuesday... she is still very tired but unable to get much rest... her cheeks are flushed...
• Wednesday... Aliza sleeps most of the day on top of a good night's sleep.
• Thursday... Aliza forces herself to eat though the constipation gives her a rising sense of fullness... she waits for the mouth sores to erupt as they usually do at this point... 
• Friday... she discovers and reports to me that it is possible to be constipated and have diarrhea at the same time...
• (I'm out of town for Saturday and Sunday morning.)
• Sunday afternoon... we have a wonderful Easter / birthday lunch (we celebrated Jan's -  April 13th, Lillian's - April 18th, and my mom's - April 20th birthdays)... the mental fog has lifted somewhat but Aliza is easily overwhelmed if two people talk at the same time or change topics too rapidly.
• Monday and Tuesday... I am out of town once again.
• Wednesday... Aliza is very teary-eyed... she is sitting on the floor of her bedroom surrounded by paperwork and her laptop, crying... she is trying to finish a few work projects that would have been quite easy and routine before the chemotherapy... she is having trouble focusing and connecting her words to her actions... she is very discouraged and her anxiety / grief are palpable... being the trooper that she is, we chunk her focus down, she keeps plugging along, and with help from Rob, gets what needs to be done, done.
• Thursday was a better day... she went to Lillian's music program at school, had coffee with a neighbor, and went to lunch with Jan and my mom.
• Later that night... Aliza shared more of her internal struggle in an email... she wrote... "Monday is coming and I am trying to mark a few things off my list.... my head is a bit clearer tonight so I am attempting to answer a few messages though I recognize that this might be my last response for a season.  Its is getting harder and harder to respond- the physical task of typing (fumbling fingers) and the mental task of gathering thoughts and ideas plus the struggle of auto correct and poor spelling mean that it takes longer and longer to respond. Its hard for me to have messages in my inbox and not answer back (just like receiving a letter or gift in the mail).  I know its not forever but its still another thing that probably needs to be shelved... and that's hard."  
• Further down she added... "chemo 8 has been a lot of focus on what I can't do or can no longer do and that has been hard. And I think by having a few "see you later" messages and blogs will help it to not feel like a pending To Do thing and something that is not right now.  I want to change my 'have to' into 'want to's' and I want to use what energy I have in time with my Sparkles and the joy in the moment (not the have to or the should do's)...  The hardest part is changing my mindset of things I think I should do to things I want to do and CHOOSE...  Its the loss of choice I grieve the most."

• Breathing test and CT scan results... according to Aliza, she passed the breathing test... the doctor replied to her follow-up email with something like, "It looks like we are on track."  Later when I asked Aliza about it she told me that the CT scan was more for the doctor than it was for her.  She seemed comfortable with him knowing more about what is going on with her body than she does at this point.  The only changes that were imagined is that one of the chemo drugs would be stopped, but that was not the case.  Rob and Aliza meet with Dr. Azar this Monday before her infusion.  We anticipate a fuller report and conversation.
• Added to all of this, Aliza has shared with me another aspect of her emotional, intellectual, and spiritual preparation.
• She is hoping that she falls in the 70% group that reaches a point of remission after the 12 infusions.
• At the same time she acknowledges that she could require more infusions, different drugs, and perhaps some stem cell treatment.
• In other words, at this point she is hoping for the best and preparing for more difficulty and trouble.
• She has also realized that even with the best case scenario, her full recovery will be extensive.
• If everything stays on track, the 12th infusion will fall on Monday, June 5th. 
• Three to four weeks after that, she will have a full body PET scan to confirm that the cancer is in remission.
• If the PET scan results are negative, meaning no cancer, and the remission is confirmed, she will have her port removed a week or two after those results are in.  (She was hoping that it would be done before her 10th anniversary, which is July 7th, but that won't be the case.)
• She will be dealing with the side effects of the chemo (it will still be in her system) for several weeks, if not 4-6 months.
• After all of this, she will begin slowly getting back into shape, resuming more of her routine, and taking on her responsibilities at home and at work. 

This is possibly more information than you wanted.  I thought it would be best to err on the side of more being more than my usual approach of less is more.  Thanks for your patience and understanding.

Lillian turns 9!!!!!

There is a whole lot of "not normal" in our lives right now.

But when I can, I try to maintain as many traditions as I can for my Sparkles.

To celebrate Lillian's birthday she and I get our morning Starbucks before heading to her "official" doctors appointment.

Lillian likes the Vanilla Frappichino with a little drizzle of caramel on top.

For those that are newer to the blog and the Sparkle escapades, each Sparkle goes to see the Dr. on their birthday to turn their new age. At the end of their appointment our Dr announces that they are officially a year older and presents them with a birthday sticker. This has been a tradition since Madison was born and I have continued for each Sparkle.

 Practicing her math facts while we wait (can you tell she's not thrilled ;)

 Officially 9 and headed back to school :)

After a birthday shopping trip with Nana, dinner with our favorite cowboys it was time for a few family gifts before bed.

On Friday, Daddy picked her up from school for a special adventure.

And then dinner with just Momma and Daddy

A simple but lovely birthday celebration for the middle Sparkle.
May this year be another year of blessings with our favorite Lillian Nicole :)

Sparkle Play Time

Star Wars Legos 

                                                                Lego time with Daddy

                                                           Super Smash Brothers :)

                                                      Time together making memories

Easter

Braces off

I can hardly believe that 2 years has nearly passed since this beauty got her braces. 

May 2015 

April 2017 (yes I know is just shy of 2 years but close enough ;)

Just in time for her 15 birthday next month. 

Love my eldest Sparkle and her smile :)

Chemo #8

In honor of opening day at Wrigley (go Cubbies) I sported my team colors and decided that my "last" meal before my infusion would follow the same theme.

 I love my husband and the small indulgences he blesses me with-  like stopping at 4 different places for lunch
 (Starbucks for coffee, DJs for a Chicago dog, Primati brothers for my fries, and Five Guys for his burger fries and peanuts :)

 Then is off to downtown for my infusion. Blood work was routine and there were no changes to my treatment.
This was the first infusion that I asked to sleep and was blessed with a wonderful and compassionate nurse who did everything she could to grant my wish.
I still had to keep my mouth cold (frozen grapes and bananas) during the first chemo drug but was able to rest under warm blankets the remainder of the time.

 My end of infusion treat was to share a Peanut Buster Parfait from Dairy Queen on the ride home.

8 done, 4 to go.

I'm Still Here

Infusion #7 was kinder then the others with its own set of new. There was no extreme or immediate crash but a lot of fatigue that wasn't eased with rest (sleeping only to awaken as unrested and  weary as when I laid down hours before). Food has become more of an enemy then a friend thus adding another set of issues to be managed, tracked and accepted.

This past Thursday I returned to the hospital (on a non-chemo week) for my breathing test and a CT scan. I knew from my first meeting with my doctor that this check point would come and its purpose is to see the effect the chemotherapy is having on the cancer and to evaluate if minor adjustments need to be made immediately, as well as, to begin to plan the next steps.
Obviously the big fear is that the chemotherapy has not shrunk the cancer and worse that the disease has spread. Some might ask (and have) the stats for these scenarios but in reality the numbers don't matter to me- It is what is and until we know and we wait in anticipation.

As the fear and anticipation build, I feel as if I have been trying to out run my illness... pushing too hard, doing too much, striving for a normal of the past that is not reasonable or feasible for the present.
I have battled the demons that remind me of my  symptoms that began my journey that are ever present and or returning.

I have smiled when I have wanted to cry,
Snapped when I should have been kind
and Pushed when I should have rested.

Fear creeps around every corner and is quick to try to steal my joy.

While I can rejoice that I have reached this stage in my journey to healing, I would be lying if I did not acknowledge that I am weary to continue and fear the end is not as close as it seems.

As I prepare for another infusion (#8) the normal list of things to do is sitting beside me waiting to be completed and to be honest I am struggling to even look at the list let alone begin or even try to complete it. I am more aware of the obstacles that are common to my life now and how they create barriers to complete tasks.
Everything is harder and takes longer.

I am battling the pressures of my own expectations

I am wrestling with my emotions desperately trying to stay grounded in Truth

I cling to the hope that no news is good news and keep taking the next right step.

And I rest in the blessings and joy that faithfully appear

Longest Friends Visit

I was blessed to be surprised with a visit from my childhood friend (we are celebrating 25 years of friendship this year). 

We spent 4 days and 3 nights laughing, crying and living life together. 

Here are the highlights of our visit.

Starbucks

 Selfies

 Slurpees (and Movies)

 Shopping

 Snacking

 Starbucks

 and Smiles

Time with a friend is always the best medicine and greatest blessing. 

Sparkle Joy Minus 1

Just the reminder, pick me up, joy this Momma needed.

Posing with my Littles, wearing our super hero shirts and stopping to giggle together.

Just missing the eldest Sparkle :)

Even the toughest days can be brightened by adding a bit of Sparkle :)