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

Monday, January 13, 2014

MEET EZRA: RECENT FAQS


There's a quote, "Be careful who you open up to. Only a few people actually care, the rest are just curious." While we count it a blessing that our sweet little boy's story has touched your heart and appreciate all of you who care, we're actually okay with curiosity too. Because amidst our own heartaches and challenges, we know that this is an opportunity to spread awareness about Noonan Syndrome and JMML (bone marrow transplants, feeding tubes, and the like)...and that's a good thing! 

A few oncology appointments ago, our doctor shared that one of their fellow MD's had done a presentation on Ezra to the oncology/hematology department. This kid is famous! She also told us that while this fellow was doing his research he stumbled upon our blog and showed it to her. We had the opportunity to meet this doctor at our latest appointment and he had nothing but glowing reviews for the blog (insert us blushing and saying an awkward thank you here). Apparently it is a top hit on Google when you search "Noonan Syndrome and JMML." Even though I realize this is a completely public forum to be sharing Ezra's story, learning about our new audience gave me quite the dose of stage fright! However, knowing that we have helped put more of this unique information out into the world for all to see (doctors and strangers alike), encourages me to keep sharing Ezra's story. At least until he's old enough to tell me to stop, that is :)

Anyway, it's been a while since I've written a nice, meaty Ezra update, so I thought I would devote this post to answering some FAQ's and maybe answer some other questions that you've been curious about.

How is Ezra doing?

He's doing pretty good. He had a very nasty cold come on right after Christmas, but it continues to improve, with just a little bit of congestion lingering. We know that keeping him home and continuing to breastfeed has really helped protect his fragile immune system and we are incredibly thankful for the ability to do these things for him. Also, he has gone from puking daily, multiple times a day, to only puking once in over two months! We cannot even begin to explain what a relief this has been. Forceful vomiting and oversensitive gag reflex are apart of NS, but it is like a switch has been flipped with Ezra, and those are a thing of the past. Hopefully the worst of that is behind us (although, we hear it can come and go).

Why is Ezra mostly housebound?

Even though Ezra is not currently on any chemo regimen, we still consider his immune system to be compromised because of the JMML. Also, because of the chemo he's had in the past, he hasn't been able to be vaccinated. He had his very first round of shots before being diagnosed with JMML, but hasn't been able to receive any more...including his flu shot. Because of this, we plan to keep him home at least through flu season, and then we will reevaluate. He obviously makes trips to the children's hospital/lab, and we have made a couple quick trips to the store, etc, but it is very important that we avoid any crowded places or anywhere Ezra could come into contact with someone who might be ill. We don't want to take any unnecessary chances or any steps backward in his body's ability to recover from JMML.

How does mama cope with being housebound?

Quite well actually. Thankfully I am a homebody and I love being at home with my boys. But, I am human, and I can get a bit antsy/stir-crazy at times. I try to stay focused on the fact that this is temporary...Ezra will get better and someday we will get to reenter society. I also have an amazing support system. It goes without saying that my husband and our families bend over backwards to help me in any way they can. But also, in the height of the scariest times with Ezra, a couple dear friends of mine (who happen to be nurses and can't be too scared off by anything I have to share with them about Ezra) became bound and determined to get me out of the house...and I will be forever grateful to them for being there for me when I needed it most!

What determines whether or not Ezra will go back on chemo?

There is no cut and dry answer, but essentially, it has to do with Ezra's overall health, the size of his spleen, and his blood counts. Right now he has a cold like I mentioned, so his counts are a little high, but his spleen is only very slightly enlarged. His counts have been a bit elevated since early December, though, so we have gone back to getting blood work every two weeks. Not fun at all, but this is obviously something that has to be monitored very closely.


At Doernbecher's last week.

Will Ezra ever have to undergo a bone marrow transplant?

We want to say with 100% certainty that the answer to that question is 'No,' but it is not 100%. There is no guarantee that Ezra's JMML will self-resolve. However, we have never heard of a child with NS not self-resolving, so we choose to believe that no, Ezra will not have to undergo a bone marrow transplant. It is a much happier frame of mind to live with when we are operating under that assumption!

Why does Ezra still have the feeding tube in his belly if you are no longer using it?


First off, I'm happy to report that our GI is in support of our decision to stop using the tube and the feeding choices we have made for Ezra over the last couple months. But, there are no guarantees that we're done for good. She is pleased that Ezra has been able to grow as well as he has breastfeeding alone, but if we start to see his growth plateau, we may have to implement some overnight tube feeds again. And, if he ever has to go back on chemo, we will be able to use it to administer his medications which is the most important factor of all. We hate that he has it, it is a pain to take care of/keep healthy, and we are constantly worried about him pulling it out (and everything that would go along with that), but he had to go through SO much to get it surgically placed, and we would never, ever want him to have to go through that again! We can't wait until it's gone...but for now, it has to stay, just in case.


Well folks, I think that checks off quite a few boxes of what inquiring minds would like to know. We'll have to save the rest for another time. We continue to be humbled and thankful for your continued support, prayers, and well wishes. This little guy has come such a long way…we hope for continued improvement and more good news to report in 2014! Thank you for following us on this journey.

Friday, December 20, 2013

MEET EZRA: EIGHT MONTHS OLD





There were too many cute pics to choose from this month! I absolutely LOVE this last picture which highlights Ezra's chunky little legs. He may be tiny, but he definitely has plenty of meat on his bones :)

Things have been relatively uneventful around here lately which we always welcome with open arms...counts looked fairly stable last week so we are able to continue avoiding chemo for now. SO thankful we will have a chemo-free Christmas! An answer to many, many prayers.

At eight months, Ezra's favorite thing to do is watch his big bro play and do funny things...Judah continues to be the only one who can make Ezra laugh without lots of tickling involved. We are still having a tough time introducing solids as Ezra appears to be allergic to EVERYTHING. Ugh, food allergies stink! Looking forward to some guidance and suggestions when we see his GI during a marathon day of appointments at Doernbecher's early next month.

Happy eight months, Ezra! We are SO looking forward to celebrating your first Christmas together.


Thursday, December 5, 2013

MEET EZRA: THANKSGIVING

November was a great month. It felt more "normal" than any month we have had since Ezra was born. He seemed happier and healthier than he has EVER been. He went almost the entire month without puking. He was off chemo meds. He was off his stomach emptying and reflux meds. He was off the continuous overnight tube feed. He went from being able to nurse for five minutes at time to upwards of 20 or 30 minutes at a time. He gained almost a whole pound. He started sleeping at night for more than a single hour stretch. He had only one visit to the lab here in Corvallis and no trips to Portland or Springfield. And he got to be at home for the holiday.


When I wasn't focusing on cooking my first full-on (and dairy-free!) Thanksgiving dinner, I was running through a list in my mind of all I had to be thankful for this year. At the top of that list was the fact that we were all home. Together. I thought of the families who weren't as fortunate, with children with bald heads, pale faces, tubes and wires, stuck in gloomy hospital rooms with even gloomier prognoses. That could have been us...but it wasn't. And by the time family had left and the kids were tucked into bed that night, I just broke down and cried...tears of thanksgiving. I don't think that I have ever known such a deep and overwhelming feeling of thanksgiving as I did in that very moment. Thanksgiving for health and for life and for answered prayers for our sweet Ezra. Thanksgiving that I have gotten to be home with BOTH my boys instead of with one at the hospital and away from the other. Thanksgiving for my husband, my partner, my rock. Thanksgiving for family members who have gone above and beyond. Thanksgiving for people, some we don't even know, who have made this burden just a little bit lighter. Thanksgiving for a faith that has been rooted in such a firm foundation, it does not waiver, even in times of insurmountable grief and worry.


It's hard to transition from all of that to say that even though we were back up at Doernbecher's this week, and lab results were not so good, and another round of oral chemo is quite likely on the horizon, we still have so much to be thankful for.

"Rejoice always, pray continually, give thanks in all circumstances..."
I Thessalonians 5:16-18


Thank you for continuing to pray for Ezra and our family. We are thankful for you.

Wednesday, November 20, 2013

MEET EZRA: SEVEN MONTHS OLD


Ezra is SO laid back (he gets that from his daddy, of course :). You just would never know he's been through all he's been through. He often has a very serious expression, especially when we're at the doctor's office (go figure!), but he is the sweetest, most smiley, silliest baby with us...and lately likes to stick out his tongue like he's doing here.

I like to look back at Judah's monthly updates when I'm writing Ezra's, just to see how he's doing in spite of his disrupted start at life. I was so happy to see how well he's doing developmentally in comparison to how Judah was doing back when he was seven months.

Judah at 7 Months (in gray) and Ezra at 7 months (in black):

1) Judah is now eating solids (all homemade): rice, oatmeal, acorn squash, sweet potatoes (yams), carrots, and green beans (soon on the menu: butternut squash, sweet peas, and avocado).

1) We're still on rice with Ezra. Not homemade. We need to get all the extra iron in this little guy that we can, so fortified it is! Looking forward to trying more foods, but it will be at a much slower pace to make sure there aren't any new allergies.

2) Sits up like a pro!

2) Ezra still falls over sometimes (often with the help of his big brother), but he can sit for long stretches on his own which is awesome!

3) Loves standing with help, but can stand on his own little bits at a time (cannot pull up to stand on his own, though).

3) Ezra has loved to stand for a long time now. Still not completely on his own, obviously, but this kid has always preferred to stretch his legs out (in the womb he constantly had his feet in my ribs - and I'm convinced he was also kicking off of them during my final contractions when it was time to push to help me out...I'm not even kidding).

4) Not really expressing much interest in crawling (I think that's because he knows we will carry him everywhere he wants to go).

4) Ezra isn't rolling over from back to tummy yet (just from tummy to back). He only rolls from his back to his side. But when he is in a sitting position, he leans over onto his hands and pushes up on his legs like he wants to take off.

5) Always loves to pull off his socks and chew on them or his toes (I think he gets this from his mama, haha).

5) No difference with Ezra. Which is why I usually keep him in footed pajamas so his tootsies can stay nice and warm.

6) Has put mama's cloth diapering confidence to the test with the new solid food poo texture (ew!).

6) Cloth diapers, what? Let's just say, the first time around, the environment was very high on my priority list...this time around, survival has been at the top of that list. Toxic chemo poo made cloth diapering a complete no-no, and post-chemo, Ezra has incredibly sensitive skin and it just hasn't worked for us. All that is to say, I think cloth-diapering is awesome and I still consider myself a cloth-diapering pro/advocate. And maybe it will work with Ezra down the road. But for now, survival trumps being earth-friendly. We'll let the parents with healthy kids take on saving the environment for now :)

7) Now has an earlier bedtime (around 8) and takes naps (IN HIS CRIB....HOORAY!).

7) Up until about two weeks ago, Ezra went to bed when we went to bed and slept by my side either in the co-sleeper or the rock-n-pay. I couldn't bear to have him out of my sight or out of reach. But now that his numbers are up, and the vomiting has subsided, and we have *shhhhhhh* taken him off the supplemental feeding tube (partially because he was waking up every.single.hour for nearly 2 months straight), he is going to bed just after Judah, IN THE NURSERY (with a video monitor)! We're like whole new people now that we all aren't awake every hour of the night. He's sometimes able to sleep 4 hour stretches now! I think the increase in sleep is going to work wonders for his growth (and for our sanity). He doesn't nap in his room yet. Usually it's in my arms if I can swing it (I can sometimes get him to nap when Judah naps. There were so many times in the earlier days when I was robbed of the joy of holding my sleeping baby as we were going to and from doctors, so now I'm clinging on to these moments every chance I get!).
 ,
8) Is SUCH a good boy...we love him SO much!

8) Ditto. Ezra is pure joy. We have been blessed beyond measure with both our boys and we love them so very much.

Sunday, November 17, 2013

MEET EZRA: FEAST OR FAMINE

This kid has to be gaining some weight, right!?

If there was ever a good time in history to have a child with incredibly complex medical issues, now is that time. Thanks to Facebook, I have not only "met" amazing people like Kasey (who I first wrote about in this post), but I have more recently come to know some other mamas of little ones who are pretty much going through the SAME exact things we are facing with Ezra. One of those people is mama to a little guy who is just a couple months older than Ezra. He has JMML, he has Noonan Syndrome, and a number of other health challenges that parallel Ezra's. The other day she wrote about it being "feast or famine" with her little guy. The same goes for Ezra. And I am happy to report that the last couple weeks have been a time of feasting for Ezra...both figuratively and literally!

For starters, Ezra has been off his chemo meds for 2.5 weeks now...and when we got his labs done this week, his numbers were great! They're not totally normal, but for him, they're great. Such a relief. Ezra's counts have been known to fluctuate drastically from week to week, but we are cautiously optimistic that the worst of the JMML is behind us. Please pray that it is!

In addition to that, Ezra hasn't puked for well over a week. Words cannot express how thankful I am that he has had a break from the horrible vomiting he suffered for so many months. It could rear it's ugly head again at any time, but I am so thankful we've all had a break from it.

As for the literal feasting, Ezra is able to nurse longer (and take in more volume) than he has since he was a newborn. Now that he is off chemo and his spleen is back to a normal size there is more room for his stomach again, hooray! He also got to try his first solids this week. Since he has such a long history of an overactive gag reflex and frequent vomiting, we were very nervous that he was going to have a hard time even getting a spoon in his mouth, but he did so, so good. And because of his severe dairy allergy, we were also scared about new potential food allergies...but initially, he had no reactions to the rice cereal. Unfortunately a few days later he had some blood in his stool...but even as careful as I am, we think it's possible some dairy snuck into something I ate, and hopefully he's not allergic to the rice...that would not be good at all. Yikes. Please pray that he's not allergic to rice.

Ezra's first solids!

And because we love a good brotherly comparison, this was Judah's reaction to his first solids...

You might be wondering how Ezra's feeding tube plays into all of this. Let's just say that we don't want to get into trouble with any of our doctors or nurses, so we don't really want to talk about it right now (but feel free to ask us privately if you're interested) :)

Overall, such good news to report! We are hopeful that our times of "famine" are more a thing of the past...or at least that our times of feasting come along more frequently, and stay around for much longer! Thank you so much for the continued prayers. We feel like so many of them are being answered.

Tuesday, November 5, 2013

MEET EZRA: "NORMAL"


Normal is such a loaded word. Things have been FAR from "normal" around these parts for the past 6.5 months, but we catch glimpses of it every once in awhile. Like last week when we got to dress up the kids for Halloween. We didn't get to do some of our usual stuff, like trick-or-treating with our friends and hundreds of other kids downtown (that would have been WAYYYY too much exposure for Ezra), but we did make it to a few houses in the neighborhood that evening. A couple months ago, we weren't quite sure what the holidays would look like for us this year...but they're starting to look a LOT better than a little baby hanging on for dear life after undergoing aggressive chemo and a bone marrow transplant, spending many months in a hospital room, and many more months away from home (and from each other) near the hospital in case of relapse...and words cannot express how much easier we can breathe knowing that we shouldn't be experiencing such circumstances any time soon!

The exciting news from last week is that Ezra got to go off his chemo meds, praise God! The oncologist was really happy with how well Ezra's counts and spleen have been responding to the chemo over the last couple months...so now we get to go off of it and see how things go. If his counts continue to look good, we should get an ENTIRE month without oncology appointments! (We'll be able to get bloodwork done at the lab down here in the meantime). Because the chemo was so effective, Ezra's white blood cell counts have gone from incredibly high down to the lower end of the scale, so the oncologist wants us to remain vigilant over the next few months as Ezra will be more susceptible to infection (especially since he won't be able to get a flu shot or other vaccinations until the chemo is completely out of his system and his counts have normalized). So, our life can't quite resume to normal yet...but we're getting closer.

In other news from last week, the doctors did ease up on their concern over Ezra's weight now that he has his Noonan Syndrome diagnosis and we can measure him on NS specific growth charts. It was so good to finally have them able to see Ezra's "dot" comfortably in the middle of the percentiles instead of trailing down, out of range (on a normal chart). We still have a LOT of improving to do in the growth department, but now that bone marrow transplant is postponed indefinitely, we should be able to work at a slower pace. To get a better idea of how tiny Ezra is, here is a side-by-side of Judah and Ezra in the Beaver costume I put together for Halloween when Judah was a baby...Judah is 3 months old in his photo and Ezra is 6 months. Of course it's not a perfectly fair comparison since Judah has always been in the 90th percentile or higher for height, but, you get the idea.


So pretty good news all around! Ezra is still on a lot of medication (mainly for his GI issues), we still have many appointments on the horizon, and many obstacles to face (and conquer!), but things are looking much better than they have at many times during this journey. We are continually humbled and thankful for the outpouring of love and generosity we have received (like the Papa's Pizza fundraiser yesterday). I say it on Facebook all the time, but in case you only follow along via the blog or CaringBridge, we SO appreciate your support...it has helped and continues to help us with co-pays, prescriptions, gas, meals, etc...and allows us to take our attention away from finances to focus on caring for Ezra and his ongoing medical issues...it is a tremendous blessing. Thank you for continuing to pray for Ezra and our family. We have such a long road ahead of us, but each day we start to gain a better grasp on our new normal, and we are so hopeful that things will continue to improve for little E.


Monday, October 28, 2013

MEET EZRA: WEEKLY UPDATE


Scatterbrained and sleepy eyes = a bulleted list of updates :)
  • If we're friends on Facebook, you probably saw our biggest news of last week: Ezra gained some weight...like he's up almost a WHOLE pound since his growth stopped back in July! For those interested in numbers, he weighed in at a whopping 12 lbs 15 oz. 
  • This weight was taken at Ezra's six month check-up. The scale there tends to weigh a bit on the heavy side, but this was a big gain for the little man, so we're hopeful he'll still show a sizable gain when we head up to Doernbecher's tomorrow. 
  • The six month check-up went well. Ezra is right on track developmentally (hooray!!!!) and we were finally able to start talking about Ezra's health in the context of a confirmed diagnosis, which is so much more productive for all involved.
working on sitting up!
  • We also had a follow-up appointment with our G-tube surgeon last week. Again, if you were on FB, you probably saw that I "got to" use silver nitrate around the hole in Ezra's belly at that appointment and change out his tube. There was no warming me up to do this, it was just, "Okay mom, you're going to do this, I'm going to tell you what to do..." YIKES!!!!! Nothing like being thrown into the deep end head first. If you know me, it was actually much better this way. There was no time for me to get all worked up and worried about it...and I do fabulously well under pressure (how else could I have coordinated all those weddings!? ;)
  • I guess I haven't said so in a while, but even though Ezra is on a continuous drip feed throughout the night, we are STILL breastfeeding, hooray! I have never fought so hard in my life to keep doing something as I have to continue breastfeeding Ezra. (It is just now occurring to me that I won't be able to have any Halloween candy this year because of Ezra's dairy allergy, what!? Lol). It will probably continue to be a battle as far as doctors are concerned because of Ezra's "failure to thrive," but now that we can start measuring Ezra on the NS growth charts, they should start evaluating him a little differently.  And no matter what, we will continue to fight for what we believe is best for the little man.
  • While we are so thankful to finally have a solid diagnosis, our day to day lives haven't changed much. Ezra is still on chemo medication at home (and we have to administer four other doses of medication via tube each day), he's still puking...A LOT, we still have a strict limited exposure rule in place, we still have a TON of doctor appointments. The reality is, things are probably going to get worse before they get better (we're sure we will be adding more specialists to our already long list which means even more appointments, there will be more tests to run, more surgeries to go through, etc, etc)...but we're confident it will eventually get better...even if that just means us getting used to all of this being our new "normal."
play time with big bro, Judah
So sorry this update is all over the place! Josh and I haven't been getting much sleep since the feeding tube was placed, so it's getting harder and harder for me to gather my thoughts. We have a very long day of appointments ahead of us at Doernbecher's tomorrow. We should have a lot more info after those appointments about what our plan will be going forward as far as JMML and NS are concerned. Ezra will have gone three whole weeks without blood work (I think that's a record!) so we are getting anxious to know what those numbers are and are hopeful we can talk about discontinuing the chemo medication (as long as his counts look good and his spleen is still under control).

We are continually humbled and thankful for your prayers, love, and support. Thank you for blessing our family throughout this journey!


Sunday, October 20, 2013

MEET EZRA: SIX MONTHS OLD

Earlier this week I wrote a bit about the blur that has been the last six months, then just hours later, we received Ezra's second diagnosis...which has changed EVERYTHING. We went the entire week without a single doctor appointment or blood test. The doctor has okayed uncrowded outdoor scenarios for now, so we took full advantage to enjoy this amazing October in Oregon. We spent the day on Saturday with Josh's parents and the afternoon on Sunday with my entire family. It was wonderful. And today Ezra turned six months old!


The doctors' appointments pick back up again this week. We're not looking forward to that but we're so thankful for the time we had off. Thank you for the continued prayers!


Monday, October 14, 2013

MEET EZRA: A DIAGNOSIS - PART 2

Alternative title for this blog post: Bone Marrow Transplant Postponed...INDEFINITELY!

There has been so much uncertainty for so many months now...so much of what I have written on this blog has been about the difficult task of facing the unknown (even the post I wrote just this morning!). There have been what seems like a hundred blood tests, five genetic tests, one platelet transfusion, four sedations, two bone marrow biopsies, scoping, ultrasounds, x-rays, an EKG, surgery, a feeding tube, medications, at-home chemo...and so many other difficult things that Ezra has endured...seemingly with no end in sight. But late this afternoon we got a phone call from our doctor to tell us that this latest round of genetic testing has confirmed that Ezra does in fact have Noonan Syndrome (his version is caused by a mutation in a gene called PTPN11). What this means is that Ezra's leukemia (JMML) could resolve on its own without a bone marrow transplant! It means that we finally have an answer, or a large part of the answer, to ALL of Ezra's medical issues. With this diagnosis we finally have some more clarity, we finally have some more direction. Finally.

This news is bittersweet. On the one hand we are elated at the likelihood Ezra will not have to undergo a bone marrow transplant. On the other hand, how can we possibly be elated to learn that our son has a genetic disorder? Such a tough question, to which we don't have an answer right now.

We do know that Ezra still has his long list of medical issues, at the forefront which lies his failure to thrive and GI/stomach issues. We know that he will be facing another surgery in a couple months. We know that blood tests are not a thing of the past, they will continue...possibly with less frequency than before. We know that Ezra will remain on chemo for a while until his oncologist is comfortable taking him off...and after he is taken off we will have to watch to see how the JMML and his blood cell counts respond. We know that Ezra is not 100% out of the woods for needing a bone marrow transplant or more aggressive cancer treatment. We know that the road ahead of us is not easy. We know all of these things now, and for the moment, we can breathe a small sigh of relief.

We want to take this opportunity to reiterate that childhood cancer is an indiscriminate killer...it needs our attention. We want to take this opportunity to encourage you to join the bone marrow registry, it could save the life of a child just like Ezra. We want to take this opportunity to inform you about Noonan Syndrome...something you've probably never heard of until now (so much information out there is false and/or outdated - to learn current, factual information start here). We want to take this opportunity to thank you for joining us on this journey...it is not over...in some ways it is just beginning. We want to take this opportunity to thank you for your prayers and support as we look ahead to better days for our sweet boy.



MEET EZRA: REFLECTING ON SIX MONTHS


Yesterday I got to go church for the first time in probably a month. As I was driving home, looking at the beautiful trees, leaves bright red and orange, I wondered, How? How is it possibly Fall?

I'm still stuck in April.

The beginning of that week in April was marked by something horrible. There were fatal bombings at the Boston Marathon. There was so much sadness that week. It was hard not to question our decision to bring another child into this broken world, full of these senseless acts of violence. But there was hope in our decision as well...we were bringing goodness into the world. A perfect, innocent child who would have the potential to touch hearts...to bring it light.

On the morning of April 20th, we welcomed our sweet boy. For a couple hours, all was well with the world. Even after a very intense and painful labor and delivery, I was doing quite well, and so was Ezra (or so we thought). I can't remember the exact moment, or the exact words that came from the doctor's lips that first brought news of Ezra's medical issues, but I do know that from that moment on, after those words were spoken, life stood still. Seasons have come and gone, but as far as I'm concerned, the earth stopped spinning that day.

The days that followed Ezra's birth, days that should have been filled with joy and happiness and getting to know our sweet boy and establishing our family of four, were filled with so much sadness, so much worry. Before I even had a chance to recover from 40 weeks of pregnancy and life's most grueling miracle, we were whisking Ezra away to doctors' offices and hospitals.

At the beginning, the prognosis looked good. I remember optimistic words from doctors like, "He looks great! This all will probably clear up on it's own." Followed too quickly by much less optimism, confusion and head scratching...for many months.

There have been so many highs and lows over the course of these months, nearly six months now. Some days have been LONG, others gone in the blink of an eye. But it's all been a blur, as if we have been living in an alternate universe. It is as if life will not go on, the earth will not start spinning again, until we know for sure what we are facing. Will Ezra have to undergo a transplant where so many odds seems stacked against his favor? Will he be sentenced to a lifetime of continued health problems because of some syndrome? ...Or worst of all, both?

Whatever the answer to those questions, a beautiful light has come into the world in the shape of Ezra. A perfect (maybe not physically, but perfect nonetheless), innocent child who in the words of a friend, has touched the hearts of more people in his young life than most of us will in a lifetime.

God bless you little Ezra. In six short months you have brought so much goodness into the world...and no matter what, it will start spinning again.