Thursday, May 15, 2014

MEET EZRA: REFLECTING ON A YEAR

What a year.

There were the earliest days that should have been filled with joy and happiness and getting to know our sweet boy and establishing our family of four, that were instead filled with so much sadness, so much worry.

There were so many sleepless nights, fearing that Ezra might spontaneously bleed to death because his platelets were so low. Peering through the darkness, watching for blood...from our newborn baby.

There was blood dripping onto floors of hospital rooms, after too many failed attempts to draw a lab or place an IV.

The vomit. Oh the vomit. There were SEVEN months of vomit, often multiple times a day. Of all the horrible things we've witnessed, this image might haunt me most.

There was the time Ezra had an IV in his head, and I had to sit there with a nurse, and slowly and gently pull out one hair after another in order to remove the adhesive covering before we were discharged. I will never forget Ezra's precious hair, torn from his precious head, clinging to my fingers...all this after quite possibly the worst night of our lives. It was probably one of the more minor things that Ezra has experienced, but the night Ezra had to have a platelet transfusion when he was only a month old was excruciatingly painful, stressful, and scary. Maybe it was the six attempts it took to place an IV, the doctor who exuded anything but confidence for our unique situation, the many forms you have to sign to acknowledge the complications that can arise from accepting someone else's blood products...or any number of factors that were outside our control that night. If I could erase that entire night from my memory, I would in a heartbeat.

There were entire days spent on edge, waiting by the phone for test results. Somewhere along the way I lost track of the number of days spent this way.

There was frustration like we've never known after months without answers...the topic of many a blog post.

There was the battle to keep breastfeeding.

There were too many procedures requiring sedation.

There was the painstaking task of recounting Ezra's entire medical history every time we had to meet a new doctor or medical professional.

There were nights spent desperately searching on the internet, trying to put the pieces of the puzzle together.

There was finally hearing the words: "We think we finally have an answer. JMML. This type of leukemia has a 50% survival rate...you'll be meeting with the transplant team next week. Ezra's best chance for survival is if he is as healthy as possible when he goes into transplant." (These words came directly after three days of fever and vomiting).

There was the time we sat in an exam room and tried to explain to our three year old that we had to rub a pokey "toothbrush" on the inside of his cheek because it would help baby brother. And then we had to imagine what it would be like if our three-year-old was a match and would have to go through with the bone marrow donation. We had to imagine both of our children in pain.

There were days spent desperately searching for the light at the end of the tunnel and struggling not only to put one foot in front of the other, but just to get out of bed in the morning.

There were days we felt like we were walking through the valley of the shadow of death, questioning if our tiny and frail little baby could possibly survive aggressive chemo and a bone marrow transplant.

There was coping with the reality that life was happening all around us while our lives would be at a complete standstill until Ezra was healthy.

There was a hole being surgically placed in our baby's belly.

There was coming to terms with the fact that Ezra's best chance for survival was testing positive for a genetic disorder with its own list of medical problems.

There was googling "Noonan Syndrome" and seeing incredibly troubling, outdated information before finding current, much more helpful resources.

AND THERE WERE MUCH, MUCH HAPPIER MOMENTS.

There was peace that passes understanding.

There was mountain-moving faith.

There were miracles.

There was gratitude.

There was the realization that a marriage and love could actually grow stronger amidst adversity.

There was my mother-in-law who faithfully met us at every single children's hospital appointment so that she could watch big brother, keep him away from the germs at the hospital, and allow us to focus on getting help for Ezra.

There was my mother who began coming over faithfully every single day after work so she could lend a hand while we figured out how to administer Ezra's chemo and other medications...and who more often than not, still stops by after work to lend a hand.

There was my sister who hung out with Judah during our frequent visits to Ezra's primary physician (pretty serendipitous that her work is right next door to the doctors office).

There was my niece who has helped us by folding more loads of laundry and emptying the dishwasher more times than I can count.

There was my dad who has prayed more fervently than anyone I know.

There was my father-in-law who shaved his head and raised money to support childhood cancer.

There were literally hundreds of prayers from family and friends.

There were meals that showed up at our front door.

There was cash handed secretly to us at church with a whisper that we should use it to fill our gas tank.

There was a week of fasting and prayer by many of our church family that immediately proceeded Ezra's first normal CBC.

There was kindness from strangers.

There was Josh's amazing company and co-workers.

There were full-blown community fundraising efforts.

There was a gifted photo session (at the time we thought it might be the only family photos we'd have a chance to get with our sweet boy).

There were words of encouragement from old friends and friends of friends and friends of friends of friends.

There was Kasey.

There was discovering an amazing support group of other NS parents just like us, including our "3 in a million buddies."

There was our oncologist telling us about the doctor she knew with Noonan Syndrome.

And there was going on to learn about a Ph.D. student, and a pharmacist, and wonderful parents, and so many other AMAZING people living with Noonan Syndrome.

And there were small strides, and big strides, and normal lab results, and weeks without vomit, and and and, there was a first birthday! A day that we feared might never come.

This really only scratches the surface of the year that was. But I needed to write this post, to close this chapter, so that we can start a new one. So we can start living again.

We are ready to continue spreading awareness about JMML and Noonan Syndrome.

We are ready to gather more stones and face whatever Goliaths come our way.

We are ready to fight for and advocate for Ezra to get the help he needs to be the happiest, healthiest, smartest boy he can be.

There will be days when we are tired and weary and we will have to reread the posts we've written this past year to remind ourselves of that fire and desire to be brave and courageous again.

And God will give us the strength to face another day and conquer another challenge.

What a year. Here's to many, many more.


Sunday, April 20, 2014

MEET EZRA: ONE YEAR OLD!


Baby P 2.0, baby brother, baby boy, squishy, stinky bottom, sweet-sweets, E-Z, baby bubba, little E, our one and only Ezra, amidst those uncertain early days, there were times we we didn't know if you would live to see this day...but you did it!!!! Happy 1st birthday to the sweetest, strongest little guy we know!

What a lovely day for a birthday...Easter Sunday. We started off with some pics at home, then went to church where Ezra got to go to Sunday school for the FIRST time. Afterward we rushed home to get ready for the big party with our family! Here are some of the best shots of the day:

birthday morning

the birthday Easter bunny



first time at Sunday school

Ezra and his buddies

the party!

the Very Hungry Caterpillar birthday

lovely cake from the Sweet Life Patisserie



checking out Ezra's monthly pictures








not feeling the gluten/dairy/soy/egg-free bday cake

buried in presents



the cousins! (missing Jacob)

all the family


Thursday, April 10, 2014

MEET EZRA: FEELIN' THE LOVE & GIVING THANKS


This afternoon my phone rang with a number I didn't know...but since I spent a couple years working on campus and my mom has worked there for nearly 15 years now, I knew it was a campus number and took the call:

Me: "Hello?"

Caller: "Hello this is Sean Mannion. We've heard your family's story and we'd like to invite you to practice."

No big deal. Just Oregon State's quarterback on the line! Glad I took the call! In case you haven't noticed, we're kind of diehard Beaver fans around here...especially for Beaver football. Josh was able to attend one game last year at the last minute, but I didn't go to any games...for probably the first time in 12 years since transferring to Oregon State my sophomore year. Josh and I went to every home game we could as students and held season tickets for a few years after we were married. The past couple years we attended as many games as possible, but last year was obviously a little difficult with Ezra's unpredictable medical issues. There were a lot of things we missed out on as a family last year...cheering on our Beavs in person was one of them. Needless to say, we are thrilled for the opportunity and our answer was YES, we would love to go to practice! (We've had many fairy godmothers/fathers over the past year and we know that one of them, Mrs. Oshinowo, is to thank for being the little birdie in Oregon State Football's ear to encourage them to reach out to us...thank you Lola!).

This is just one example of the love shown to our family. There have been so many events in honor of Ezra over the past year I don't really know where to start. There were the Friday bake sales and golf tournament at NuScale (Josh's work) in the early days. There was the Nadzitsaga Lacrosse Club Medicine Game in October and the very well attended Papa's Pizza event last November.



And just this past Saturday our family was listed as one of the recipients of the proceeds of the Corvallis Kiwanis Club's 60th annual pancake breakfast.


We belong to an amazing community. Wow.

But the outpouring of love to our family doesn't stop in Corvallis. Throughout this journey with Ezra, we have received so much love, many prayers, and support from throughout the country (even world, can you believe that?). In February, my best friend Sarah who lives all the way in Nashville, TN hosted a Premier Designs "Party with a Purpose" that was so well attended (both online and in person), we were able to use some of the proceeds to buy a special new high chair for Ezra that will help him be more organized with his eating and will benefit his overall motor skills. How great is that?

It is not lost on us how blessed we are. Our family, our church, our community, our friends, our co-workers, and complete strangers have made all the difference to us throughout this year. What could have been a stressful financial time has not been. You have allowed us to focus on surviving the hardest days and celebrating the happiest ones. Not all families in our shoes can boast of such an outpouring of love and generosity, and we do not take that for granted for a second. Thank you!!!!!


We want you all to know that we plan to use the Ezra Parker Fund (set up by our friends from church after Ezra's initial JMML diagnosis) to continue paying for Ezra's ongoing special needs and medical expenses...and someday we hope to attend the Noonan Syndrome Conference so we can meet other families who have been touched by Noonan Syndrome and consult with doctors who are NS experts. In the meantime, to those of you who continue to express your desire to help Ezra, in lieu of donating directly to our family we encourage you to donate to any of these organizations who are leading the way in helping children like Ezra who have Noonan Syndrome and/or JMML (in no particular order):


Again, we are SO thankful for the support we have received over Ezra's first year of life. It brings tears to our eyes and brings us to our knees in thanksgiving to God for the way he has used each and every one of you to encourage and bless us. The generosity poured out to our family has been so humbling...and we will make it our mission to look for opportunities to pay it forward in the future. Thank you.


Wednesday, March 26, 2014

MEET EZRA: 11 MONTHS OLD


Since I'm almost a week late on this post, I'll keep it short. This past weekend we took an impromptu trip to the coast...and Ezra loved every minute of it. It was amazing being out and about as a family and we are hopeful there will be more and more carefree days like this in the near future. There is more to say, but I'll have to save it for another time...

Rogue Brewery, Oregon Coast 03/22/14

Until then, happy 11 months Ezra! We can't believe your 1st birthday is just around the corner!





Saturday, February 22, 2014

MEET EZRA: 10 MONTHS OLD


This little sweetheart turned 10 months old a couple day ago. It was a rough week, but for a good reason...Ezra's oncologist okayed resuming vaccinations! (The decision to resume was based on his blood counts being within the standard range last week). It's crazy, with all the horrible things he has endured, that these shots had such an affect on the little guy...but he was pretty miserable. Thankfully he seems to be back to his sweet, happy, easygoing self, and we are thrilled that we are starting to make up for lost time with his missed vaccinations. Hopefully in a month or two we will cautiously reenter society ;)

As far as milestones go, Ezra is babbling up a storm these days, loves clapping his hands, and rolls everywhere he wants to go. He has some work to do with his core and upper body strength, so we have initiated Early Intervention support to help us with exercises to improve his strength and make sure he is staying on track developmentally. The best thing about EI is that they come to our house! No packing up the boys and scrambling out the door to get to the clinic on time, we get to experience these appointments in the comfort of our own home.

Happy 10 months little buddy! You are the sweetest little fighter we know and we love you so very much.

PS - Our friend Kasey shared this video on Facebook this week and we found it to be SO encouraging, you should watch it too: http://www.youtube.com/watch?v=k9ZcN_6wzp8

PPS - Ezra's buddy Braelyn and her family could use some extra prayers in the next few weeks, please send your love their way!

 

Friday, February 14, 2014

MEET EZRA: OUR HEARTS ARE FULL

Our hearts are full, overflowing even. Yesterday Ezra had his blood work/oncology appointment up at the children's hospital, and in case we aren't *friends* on Facebook and you didn't see our status update, we want you to know the latest:

Wednesday, February 5, 2014

EZRA & FRIENDS: 3 IN A MILLION

It seems like a lifetime ago when I first wrote about JMML (Juvenile Myelomonocytic Leukemia). The statistic varies a bit, but one source says,

An estimated 25-50 new cases of JMML are diagnosed in the US each year, which equals about 3 cases per million children.

As you know, Ezra is one of those 3 in a million, and I'd like to introduce you to the children who account for the other 2 in that million. I've come to know these kiddos (and their mamas) through Facebook...and we pray for them on a daily basis, along with our sweet Ezra. I'd like to invite you to pray for them too, and to think of them and their families when you remember Ezra and our family. Before I tell you more about these little sweethearts, I will add that they also have Ezra's second diagnosis, Noonan Syndrome (PTPN11). While it is expected that all three of their JMML cases should self-resolve without bone marrow transplant, these precious babies have a myriad of other struggles and medical issues caused by NS. Since February is Noonan Syndrome awareness month, I encourage you to visit the Noonan Syndrome Foundation website to learn more about this complex genetic condition (which in and of itself is much more common than 3 in a million; it is close to 1 in 1000 to 2500 children).


via Noonan Syndrome Foundation on Facebook

Without further ado,

MEET LOGAN:

Logan's mama was the first NS mama I came to know back when we only had our JMML diagnosis, but the NS diagnosis was looking more and more likely. Logan is just 2.5 months older than Ezra and recently celebrated his first birthday.



MEET BRAELYN:

I met Braelyn's mama a couple months after Logan's mama. Braelyn is just one month older than Ezra to the day!



Like Ezra, Logan and Braelyn have been through more than their fair share in their first year of life, undergoing MULTIPLE sedated procedures and surgeries, and enduring more needles than you could ever imagine. These three cuties share many similarities, but being that NS is so variably expressed, they have medical issues that distinguish themselves from each other as well...those are their stories to tell.

I am so thankful that I've gotten to know these two babies and their mamas. Whether a texting frenzy or Facebook messaging session, it is such a blessing to be able to bounce around questions, empathize with each other, and encourage one another. I count it an even greater blessing that the three of us share the same faith and can relate to each other on a deeper spiritual level. I believe it is no accident that the three of our families have crossed paths and that our little ones are so close in age. I look forward to the day Ezra, Logan, and Braelyn are thriving and our families can all meet each other in person.

Thank you for continuing to remember Ezra in your prayers! I want to ask you again to please think about Logan and Braelyn when you think of Ezra...3 in a million who are so worthy of your thoughts and prayers.

Monday, January 20, 2014

MEET EZRA: NINE MONTHS OLD


It's becoming harder and harder to pick just one monthly picture! But this one perfectly captures Ezra's sweetness :)

Not much to report since I wrote this update only a week ago. So, happy 9 months Ezra, we love you!




cousin Ashley got to help with pictures today!

Sunday, January 19, 2014

MEET JUDAH: 3.5 YEARS OLD


Let me start off by saying that God has blessed us with two of the sweetest boys on the face of this earth. But, my oh my, the terrible twos threes are a real thing people! There were a couple memes floating around Facebook recently, and they are so spot on for our sweet Judah...



But other than the times when no amount of logic or reason or even humor can calm our seemingly hormonal and irrational three-and-a-half-year-old, this is actually the funnest age yet! It is such a joy to witness Judah's intelligence and imagination blossom right before our eyes. This kid's memory is unbelievable. He can hear a song or a book just a couple times and repeat it back, word for word...it is pretty amazing (to his parents and grandparents, at least). And if he doesn't remember a word, he makes one up and doesn't skip a beat! (Current favorite books to recite: The Polar Express and Space Walk and favorite songs to sing: Disney Frozen soundtrack and Do-Re-Mi)

Happy three and a half years to our sweet, sometimes highly emotional, one and only Judah!



Judah-isms, Part 2 (Part 1 here)

"It's your lucky day buddy!" (In response to getting a hot chocolate or other special treat.)

*Me cleaning up things around the house, Judah following right behind me undoing everything.*
Me: "Judah, that's not very helpful for you to make messes of the things I've already cleaned up."
Judah: "Oh, so you mean you don't want my help?"

Us: "Judah, can you go get ________?"
Judah: "Oh yes I sure can."

*Judah asks us a question*
*We answer*
Judah replies: "Oh, oh! I see."

Us: "Ezra, are you poopy?"
Judah: *sniff, sniff* "Oh yes, you are poopy Ezra." (Whether he is poopy or not, haha)

*Ezra crying in car*
Judah: "It's okay baby brother, mama will feed you." Or, "It's okay Ezra, we're almost home." Or, not quite as sweet, "Ezra, Ezra! Chillax."

Judah: *sneeze*
Me: "Bless you!"
Judah: "I tooted too."
Mom: "Way to multitask, buddy."

PS - A special thanks to my BFF Sarah of Sarah Thomson Price Photography for brightening up my amateur photos of Judah!

PPS - "I can't keep calm I'm three" and "Threenager" images via: here and here