Friday, December 20, 2013


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


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


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-play. 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


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


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 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 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 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


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 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


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


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

There has been so much uncertainty for so many months 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 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 is not 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.


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 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.

Sunday, October 6, 2013


LOVE this blurry phone pic :)

Right now our lives are in limbo. Most mornings we wake up in utter disbelief. The fact that our child has been given either a 50% chance to live or a bit better odds, but accompanied by lifetime of health problems, is a harsh reality to face each day. Not knowing whether or not Ezra has Noonan Syndrome, or if we will be heading to the hospital at a moments notice for a transplant, is definitely our toughest test in patience thus far. For the time being, our insurance company has decided not to cover the Noonan Syndrome testing. Dear insurance company, would you like to pay for A) some genetic testing or B) an immediate bone marrow transplant and approximate 3 month hospital stay? The answer seems pretty clear to us! Hopefully they can be educated on the importance of these test results and come through for the meantime, the test is still being processed as it should be, so we are thankful for that.

A couple weeks ago we learned that Ezra's numbers were looking GREAT. I mean, we weren't even sure the doctors were looking at the right child's bloodwork the numbers were so good. AND, the size of his spleen had reduced dramatically. So, the at-home chemo has been working, hooray! Unfortunately it's also working to make Ezra puke more than usual. When I say puke, I'm not just talking about spit up. I'm talking about volcanic eruptions of vomit out the nose and mouth. Imagine your child, scratch that, your tiny baby, having the stomach flu Sometimes with a split second of warning, sometimes with no warning at all. It is a nightmare to witness, I've never seen anything like it, and it makes us so sad to see him go through's not fun to clean up either. Thankfully over the course of five months (he's been puking like this since his first week home from the hospital, long before chemo), we've wised up and started carrying around a puke bucket (thanks for the suggestion, mom ;)

With all this puking, the hope was that the feeding tube would help Ezra pack on some extra weight. So far he is up just a couple ounces and we're left feeling like we're running a small hospital out of our home for no reason some days! We're SO thankful for our nurse/dietician friends who we can bounce questions off of so we don't get scolded by our doctors for messing things up too much. We're definitely looking forward to the day things start running a little more smoothly and Ezra starts to grow again.

I think that's all for now...I could continue to write for days because this little guy has more health issues than most of us will have to face our entire lives, but we'll call it good for tonight. However, no post would be complete without a heap of thanks. A HUGE thank you to Josh's co-workers for not only starting the weekly bake sale I mentioned in the last post, but this past week put on a golf tournament with the proceeds going to our family. We are completely blown away by their generosity. We have also continued to receive other meals/gifts/donations/encouragement...many from friends and family, and many from people we hardly know (or don't know at all). Wow. Just wow. Again, we are blown away by your generosity...and we are VERY much behind on thank-you notes...hopefully we will catch up someday! In the meantime, you heard it here, THANK YOU from the Parker family!!! It is amazing the way a meal/gift/donation/word of encouragement can bring some light to the gloomiest of days. Our hope is that someday this will all be behind us and we can pay forward your generosity, love, and support.

Monday, September 23, 2013


I have started this post so many times. And then I stop. It's so hard to explain. JMML is different than a "regular" leukemia...and now there is an added layer of complexity: PTPN11. A couple weeks ago I wrote about how JMML has three different categories of diagnostic criteria. Ezra fulfills all the diagnostic criteria for categories one and three, but up until last week, we were still waiting for results from category two. Category two is a group of genetic mutations found in the leukemia cells of approximately 90% of patients with JMML. Amidst the craziness of last week, we found out that Ezra does in fact fulfill category two criteria as well. A mutation in a gene called PTPN11 was found in his leukemia cells.

What does this mean? Well, it means that there is a 70% chance that Ezra has Noonan Syndrome, "the most common syndrome you've never heard of." Before I explain more about Noonan Syndrome, let me explain what this means for Ezra and his JMML. First off, a child with the PTPN11 mutation in his leukemia cells doesn't normally have Noonan Syndrome unless the mutation is also found in his healthy cells. When Ezra had his G-tube surgery last week, they took some skin biopsies so they can do the complete genetic testing to find out whether or not Ezra has the PTPN11 mutation in his healthy cells. This means we're back to the waiting game. We were told results would take six weeks...but being as familiar as we are with the genetic testing waiting game, we know that this could be closer to a three month wait. Why are these results so important? Well, hold onto your seats for this one. If Ezra also has the PTPN11 mutation in his healthy cells, then he does in fact have Noonan Syndrome, which means his leukemia could resolve on its own without a bone marrow transplant.

Your immediate response to this news is probably jubilation. We understand. We're pretty much feeling that way too. HOWEVER, Noonan Sydrome is no cake walk. "Noonan syndrome (NS) is a variably expressed, multisystem disorder with an estimated prevalence of 1 in 1,000 – 2,500 births. People with NS may experience bleeding issues, congenital heart defects including hypertrophic cardiomyopathy and/or pulmonary valve stenosis, lymphatic abnormalities, small stature/growth issues, feeding and gastrointestinal issues, failure to thrive, hypertelorism, learning disorders, unexplained chronic pain, chiari malformation, hypotonia, ptosis, skeletal malformations, laryngomalacia, tracheomalacia, opthamology issues, orthopaedic issues, oncology issues and much, much more" (source: The Noonan Syndrome Foundation). AND, if Ezra has NS, there is no guarantee that the JMML will resolve itself and we could be back to square one facing a transplant any day (with a whole new world of additional challenges to face).

Where does this leave us? Right now we are just watching and waiting (and continuing to go to and from appointments with our oncologist and other specialists). If results come back and Ezra does have NS, the best case scenario is that we will wait up to a year to see if the JMML will resolve itself before undergoing a transplant (as long as the leukemia doesn't progress too aggressively). And, in the meantime, Ezra still has all his many health issues in addition to JMML, he is still on chemo, he is still housebound, and the future of his health is still uncertain and scary and confusing. If results come back and Ezra does not have NS (there is a 30% chance that he doesn't), we will proceed with the transplant. It is our understanding that a 9/10 match has been found, secured, and ready to go!

This post probably leaves many of you scratching your heads...none of this is easy to explain or understand. We just know that we want to share this latest development with you so that you can continue to pray for our sweet boy and all his many challenges, and for us as we try to be patient and make sense of it all. It's going to be a LONG six to 12 weeks as we wait to learn our next step in this already long journey. Thank you for waiting and hoping and praying with us.

Sunday, September 22, 2013


This little guy turned 5 months old on Friday. Still has a smile on his face, even though he has been grumpier than usual on chemo meds and with a new hole in his stomach...who could blame him!? You are such a trooper, Ezra. So brave and so strong. We love you little buddy, here's to many more months that turn into many more years!


I think we were all on auto-pilot this week. To say it was exhausting would be an understatement! So, this will be a picture-heavy post because I don't have the energy to write about it. But, just to recap, Ezra hasn't grown in length and has been in the 11-pound range since JULY. In fact, before the surgery Wednesday, he still hadn't broken 12 lbs. (It is mainly the massive size of his spleen crowding his stomach that makes it impossible for Ezra to hold down very much at a time, so he can only breastfeed very small amounts without vomiting). After much feet-dragging, soul-searching, and doctor-urging (and lots of frustrations actually scheduling the surgery), Ezra finally had a G-tube surgically placed at Sacred Heart in Springfield on Wednesday. The idea is that he will be on a drip feed throughout the night to try to get him some more calories at a very slow rate. The tube will also help us administer Ezra's chemo meds.

Before surgery. Poor little guy had to go 12+ hours without eating (6 before surgery, 6 after).

Making this gown and bracelets look so handsome. Loved that it had a "Noah's Ark" theme to remind us that there is still a rainbow in store for Ezra :)

Sacred Heart is so high-tech! Thankful to have this reader board that told us what stages Ezra was at throughout the whole process as we waited anxiously. (Just like the reader board at an airport, only not quite as fun!)

After surgery, still pretty heavily sedated.

We had the most beautiful view from our hospital room...made the stay just a little more pleasant. (McKenzie River)

Lots of drugs made for a very sleepy Ezra.

This is what a G-tube looks like post surgery (it required two other incisions, one of them through the belly button).

Day 3 - so ready to go home!

Big brother hanging out in the hospital room window sill.

The little bear they put in Ezra's crib post-surgery, with a band-aid appropriately placed on the belly.
The week started out at Sacred Heart with a very unpleasant time at the lab, but the rest of the experience couldn't have been any better (except if we weren't there at all, of course ;) ). Our surgeon was amazing as were all the nurses who cared for Ezra. So very thankful to those in the medical field, for the crazy hours they work and the way they teach us to take care of our sick little ones! And so very thankful to all of you for praying for Ezra and our family this week. Please keep praying for little E and the rest of us as we adjust to this new world of feeding tubes and a house full of medical equipment.

PS - We are so thankful to our families for caring for Judah while we are away caring for Ezra...Josh's parents when we are up at Doernbecher's, and my parents and sister when we are closer to home. Being away from Judah is excruciatingly painful, and having him nearby wherever we are makes this trial just a tiny bit easier.

PPS - A special thank you to Josh's co-worker, Amber, who has set-up a bake sale each Friday at work to benefit our family. Thank you, Amber!

Sunday, September 15, 2013


So, here's the update. It was a frustrating week. Coordinating all of Ezra's medical care is something we have been doing for nearly 5 months now, but it never seems to get any easier. Especially with new doctors and specialists added to the mix. This week was all about trying to get Ezra's feeding tube surgery scheduled. Josh fielded most of the phone's a wonder he's still sporting a ponytail because I know he wanted to pull his hair out after about the hundredth call. Long story short, Doernbecher's surgery department has recently undergone some restructuring and hasn't quite put all the pieces back we have been referred down to Sacred Heart. We have a consultation down there tomorrow and Ezra will have surgery there on Wednesday. Please send extra prayers that day. Ezra hasn't been doing so well with his at home chemo as of late. He wants NOTHING to do with one of the medications and his puking has really picked up. As much as we have wanted to avoid the feeding tube, the time has come.

In other bummer news, we never received the test results we thought we would receive last week. You would think by now we would have learned that any kind of genetic testing is NEVER done when they say it's going to be done...but wishful thinking often gets the best of us. We also learned that depending on the results of said tests, we may have to start additional genetic testing that will take at least another six weeks. We'll just cross that bridge when we get there, though, because the thought of sitting here another six plus weeks waiting for test results does not sound like fun at all.

In the meantime, this is what our life looks like these days:

A, "Thanks for stopping by," but sorry we cannot have visitors right now sign at the front door. (By the way, thanks to all who have signed up to bring meals...they have been a tremendous blessing).

Reminders on the front and back doors to immediately remove shoes, wash hands, and use hospital grade sanitizer.

Chemo meds, medical gloves, syringes, etc on the top of the fridge where they are far out of our three-year-old's reach but easily accessible for daily use.

Amidst all the frustrations and inconveniences of being housebound are many rays of sunshine...Ezra's adorable smiles and new found love of his toes...Judah's hilarious sayings and the sweet things he tells baby brother when he's crying...all of you who are praying for us and offering your generosity and encouragement. And, something that I haven't shared yet that has been such a tremendous blessing, is the way God put a sweet woman in our lives named Kasey. Weeks ago, a friend from Oregon now living in Tennessee shared Ezra's story and prayer request with her small group. When the 'JMML diagnosis' came up, another woman in that small group knew that she had to help get us in touch with her friend Kasey. So who is Kasey? Well, she's another 31-year-old woman like myself, clear on the other side of the country...and she is the mama of a boy named Ethan who is a FIVE YEAR SURVIVOR of JMML! Like Ezra, Ethan was diagnosed when he was just a tiny baby, he underwent a transplant shortly after, and now, in the words of Kasey, "is not only surviving, but thriving." Kasey doesn't just offer her own family's story of hope for our family, but she is a sounding board for our questions, our worries...just someone who can empathize with our situation in a way very few people are capable of doing. Thank you Kasey for being a ray of sunshine to us (and thank you Lindsay Lizotte, for voicing that prayer request weeks ago...words cannot express how truly grateful we are for the divine intervention that brought Kasey into our lives...through you!).

Sunday, September 8, 2013


This past week was a long, slow week as we waited for more test results. Here's what we know: Judah is not a match for his brother. Very bittersweet news. On the one hand we are devastated for Ezra's sake (because that would have been the best, closest, quickest match)...and on the other hand we are relieved for Judah's sake. We're not quite sure how we could have explained to our band-aid-fearing, ice-pack-hating 3-year-old that he would have to get poked with needles and go through all these traumatic things in order to save his baby brother's life...because that's just not something you could possibly explain to a 3-year-old. And we just can't imagine BOTH our babies in is hard enough. The good news is that preliminary searches have already found some 9/10 (marrow) and 5/6 (cord blood) matches in the donor registry, but we will have to wait for further screening on those.

The other test results we are awaiting are a little more complicated to explain. Basically, there are three categories used to diagnose JMML. Ezra fulfills the diagnostic criteria for categories one and three, but we are still waiting for results from category two (although, the JMML diagnosis can be made, and has been made for Ezra regardless of those results). Results from category two (essentially, a group of genetic mutations commonly found in patients with JMML) could change how we proceed with treatment/ we have a lot riding on those results. We hope to receive them this week.

In the meantime, Ezra is hardly even 12 lbs and hasn't gained any weight or length for close to two months. His spleen is so enlarged, his stomach is crowded and unable to get the amount of food he needs to grow. So, while we are awaiting a date to have a feeding tube surgically placed (called a G-J tube), we have started chemo treatments at home with the goal of getting Ezra's spleen to shrink and make more room for his stomach. So far Ezra has done as well as can be expected taking his chemo medicines, but it's hard to say how intense the side-effects will be once he's been on them for a longer period of time.

We are continually amazed and humbled by everyone's generosity and thoughtfulness while our family endures this incredibly trying time...please know how very thankful we are. We ask for your continued prayers as we await more test results, for the pending surgery and transplant, and for Ezra to continue to do well with his at home chemo. This is by far the hardest trial we have ever endured, but by the grace of God, we keep putting one foot in front of the other each day, and we trust that he will continue to provide the strength and courage we need going forward. Thank you so much for your love and support and for helping to keep us encouraged.

PS - A special thanks to Melissa Ann Photography (photo above) for blessing us with a photo shoot earlier this week. We are so grateful for the opportunity to have our family photographs taken while Ezra is still healthy enough to be at home. Thank you Melissa!

Sunday, September 1, 2013


Since sharing the JMML news, we have been back up to Doernbecher's to meet our oncologist and talk more about Ezra's diagnosis and treatment plan. Given the complex nature of JMML, our path forward is a little uncertain at this time. I keep wanting to write a detailed update for you all to explain some things, but there is so much to say, and it's so complicated, it's really too hard to put into words right now. Hopefully we will have some more direction by the end of the week and I can write an update then. In the meantime we are still at home and Ezra is relatively "healthy," but his immune system is of course compromised and we have to be extremely cautious (translation: no outings to public places except for doctor's visits).

Thank you, thank you for the continued prayers, love, and support!

PS - A couple of our friends from church have lovingly set up a Caring Bridge site and support planner for us which you can visit here:

PPS - September is National Childhood Cancer Awareness Month. Here are some ways you can support childhood cancer:

Shoot, one more thing! I shared this on Facebook the other day, but in case you didn't see it:

Many of you have expressed your desire and willingness to donate your bone marrow for Ezra. Words cannot express our appreciation for this amazing, selfless act of kindness. Unfortunately, it is highly unlikely you will be a match for fact, the only person that they are willing to test is Judah (there is a 1 in 4 chance that he will be a match). What you can do is join the registry anyway (for free) is a huge commitment, but it could potentially save the life of another precious child. Please visit here to learn more: Be the Match - National Marrow Donor Program

Friday, August 23, 2013


We are still waiting for the WAS test results. What we originally thought would be a 4-6 week wait turned into a 6-8 week wait, and most recently, a 9-10 week wait. But so much has happened since that test was drawn two months ago, the results now seem obsolete.

A week ago Tuesday (08/13/13), Ezra's routine blood work (CBC) was drawn. We've done this so many times now, we have a bit of our own routine going. Since my niece Ashley is still on summer break, I usually drop her and Judah off at a park on the way to the hospital, and Ezra and I meet up with Josh who drives over from work. We check in. We wait. We get called back to the lab. We recognize pretty much all of the phlebotomists on staff and cross our fingers that we get our favorite one. We hold Ezra. They put heat packs on his tiny feet or arms. If he needs one, the placement (and often replacement) of the tourniquet is enough to make him cry (sometimes more than the actual heel stick or needle poke). They poke him, just once if we are lucky. They fill the vile with his blood. We hope they don't draw a drop more than they need. We hope that the sample doesn't clot so we don't have to start the process all over again. They place some gauze and wrap it up. We watch the clock to make sure it isn't wrapped too long. Josh goes back to work, I pick Ashley and Judah up from the park, we go home and we wait for the results via phone the rest of the day, wondering what the numbers will be. Praying, hoping, wishing that they have improved. So last week, late afternoon on Tuesday, we get the numbers. Platelets are up to 104. Amazing. Hemoglobin is up to 9.6 (it hadn't been in the 9+ range since June). White blood cell count is still through the roof at 33.1. We aren't happy with the white blood cell count, but are pretty excited about the other numbers. We wonder for a second if maybe things are turning around for our sweet boy.

Then the phone rings Thursday afternoon later that week (08/15/13). It's our pediatrician with bad news (life altering news). When the pathologist was examining Ezra's blood work from Tuesday, he discovered immature white blood cells. Now our pediatrician has been concerned for many, many weeks about Ezra's white blood cell count, and the possibility that Ezra could have a myeloproliferative disorder, but without the green light from the hematologist (presumably because we were still waiting on the WAS test results), or supporting results from Ezra's first bone marrow biopsy, to our knowledge that kind of diagnosis was not really explored much further. The discovery of the immature white blood cells changed all of that, though. And not only that, but over the course of the last 6 weeks or so, Ezra has pretty much stopped growing...very little weight gain if any, and very little increase in length. His spleen has also become increasingly large. And, at the tender age of 4 months old he has been more severely sick than big brother Judah has been in all three years of his life. On Friday, after Ezra came down with a stomach bug, we met with our pediatrician and discussed all of the above. Of course I had already googled the heck out of what I thought we would be facing, but at our appointment it was confirmed that we would need to head back up to Doernbecher's for Ezra's second bone marrow biopsy, and that the likely myeloproliferative disorder in question is a form of leukemia called JMML (Juvenile Myelomonocytic Leukemia).

So all that brings us to this past Monday (08/19/13) when Ezra had to undergo his second bone marrow biopsy. After speaking with our hematologist before/after the procedure, it became more and more clear that the JMML diagnosis was imminent and that this second bone marrow biopsy would most likely be a confirmation of that diagnosis. Thankfully we didn't have to wait too long before receiving the phone call (this afternoon, 08/23/13) with the news that will forever change the course of our lives: almost all of the biopsy results from Monday are in and they do in fact support the diagnosis of JMML. We will head up to Doernbecher's next Tuesday to talk about our course of action.

I have links in the paragraphs above to the JMML Foundation, but I will include some information from other sources here as well:
  • JMML is a serious chronic leukemia (cancer of the blood)
  • It is a very rare disease, accounting for 1-2% of all childhood leukemias
  • An estimated 25-50 new cases of JMML are diagnosed in the US each year, which equals about 3 cases per million children
  • Most cases of JMML are diagnosed in infants and toddlers
  • JMML occurs more commonly in boys
  • There is no known environmental cause for JMML
  • Since about 10% of patients are diagnosed before 3 months of age, it is thought that JMML is a congenital condition in these infants
  • The best course of treatment for JMML is a blood or bone marrow transplant (BMT)
  • Prognosis is more favorable:
    • for males
    • when diagnosed under the age of 1
    • when platelet count at diagnosis is greater than 33,000
  • The rate of survival in remission at 5 years after transplant is about 50%
These are some of the JMML symptoms Ezra has displayed:
  • Paleness
  • Fatigue/lethargy
  • Petechiae
  • Fever
  • Infection
  • Bleeding
  • Cough
  • Poor weight gain
  • Lymphadenopathy (enlarged lymph nodes)
  • Moderate hepatomegaly (enlarged liver)
  • Marked splenomegaly (enlarged spleen)
  • Leukocytosis (high white blood cell count in blood)
  • Absolute monocytosis (high monocyte count in blood)
  • Anemia (low red blood cell count in blood)
  • Thrombocytopenia (low platelet count in blood)

Obviously this is devastating news, but in a very small way, it is good to finally have a diagnosis, to know the severity of what we are facing, and to ultimately be one step closer to helping our sweet, sweet boy. That being said, there is still so much for us to process, so many new questions to many tears to cry.

We share this news with the hope that you will continue to pray for Ezra...and that you will specifically pray for a miracle...for his complete healing. We ask for prayers for strength and courage for the difficult road that lies ahead of us. We know that you probably have a lot of questions right now, but we ask for an extra measure of your grace when we cannot find the energy or the words to answer them. We ask you to stick by us through our triumphs and through our trials. We need your love and support now more than ever, and we thank you in advance for all of it. God bless our sweet Ezra, and God bless you all for joining us on this journey.

Tuesday, August 20, 2013


Today is my 31st birthday and Ezra's 4th month. Last year on this day, I was in Disneyland celebrating my 30th...and Ezra was safe in my belly. Oh, how I wish I could go back to that moment.

It has been a hard, hard week. A hard, hard 4 much harder than any child, let alone a 4-month-old baby, should have to endure. There are so many details about the current state of Ezra's health that I cannot share right now, they are much too difficult for us to wrap our heads around. But we are so very thankful that this little guy is in our lives. He is pure joy, even in hard times. Happy 4th month little Ezra! We love you so very much.

Friday, July 26, 2013


Yesterday we made our first trip down to Springfield with Ezra for our followup appointment with the GI specialist who performed the scope on Ezra (back on 06/11/13). She is able to travel from Doernbecher's to a clinic at Riverbend a couple times a month - it made for a MUCH shorter day only having to drive about 45 minutes each way which was much less exhausting than the marathon trips up to Doernbecher's. The visit went pretty well overall. Thankfully Ezra pooped while we were there so she got to see it and thought it looked decent. Since we have been obsessively studying each and every bowel movement Ezra has had since the first sign of blood 10 weeks ago now, it was really important to me that the specialist actually got to see his stool since up until this point it's all been hearsay.

It's been almost two whole weeks since I've gotten to nurse my sweet boy...torture for him, torture for me (I'm telling you, interrogators should use a breast pump to get the answers they are looking for, their subjects would cave in no time!). I'm supposed to be pumping 8 times a day but I'm doing good to get in 6 rounds. It's incredibly time consuming and difficult to fit in the day while caring for a 3 month old and 3 year old. But, there is light at the end of the tunnel, hooray! The doctor says I get to try breastfeeding in about two one more weeks to see how he handles the milk after a month three weeks of gut healing on the pure amino acid to my ears!!! Then we go from there. Like me, she would really like Ezra to be getting the antibodies from my milk (what I've been thinking/saying all seems so obvious), but he's such a sensitive little guy we still don't know if he'll be able to handle it. She knows that I'm willing to eliminate more from my diet in addition to dairy, so I imagine I'll need to go off soy again and whatever else I need. She's a bit concerned about his vomiting so we may need an upper GI/barium test done, she days the procedure can be done at Riverbend if it continues.

Our pediatrician has already sent a referral up to Seattle Children's Hospital for Ezra. The GI specialist is definitely in favor of us going up there as well, and thinks the hematologist should also refer us to an immunologist. In her words, she thinks there's a bit of a gap in the type of care/attention Doernbecher's is able to offer someone like Ezra, and thinks it's time we go elsewhere. After three months with no diagnosis we couldn't agree more! We are thankful Doernbecher's is around and that we have been able to have the procedures Ezra has needed done within our own state so far...but he really needs more attention than they are able to provide him within their areas of expertise.

In the meantime, we are STILL waiting for the WAS results. We are rechecking blood counts every one to two weeks (Ezra's platelets have seemed to plateau in the 70,000 range for the past month, white blood cell count is still through the roof, and hemoglobin is still very low). We will now be checking Ezra's weight at the doctor's weekly, or every other, to make sure he is gaining enough on the formula (but I am definitely crossing my fingers that we'll be back to breastfeeding as planned in two one weeks...and he's never had trouble gaining weight on that).

Three months has been such a long time to go without a diagnosis but we are starting to realize it might be much longer before we have answers. Thank you for your continued love and support. We definitely continue to need all the prayers we can get...this waiting game is not easy!

And because no update is complete without a picture, look at this cute little side-by-side Josh put together of the boys (both at 3 months, wearing the same onesie - Judah on left, Ezra on right):

Wednesday, July 24, 2013


Big brother Judah got the majority of our attention over the weekend for his third birthday, which means I'm a bit behind on Ezra's three month post. So here it is! With so much focus on all his medical issues some of Ezra's other milestones haven't been given as much attention. So let's talk about them. Let's see, first off, Ezra can be quite the little chatterbox at times which is so adorable. We have yet to have a good crack up session, but I imagine it is on the horizon (can't wait!). Ezra still sleeps in our room. By this age Judah was already in the nursery because it was impossible for me to sleep between feedings and daddy said, enough is enough! But with this little guy and all his troubles, sleep or no sleep for mama, I can't bear to have him out of my sight. Ezra seems to be a bit of a late bloomer in his gross motor skills, but has been doing a bit better with tummy time and head control this past week. Our theory is that with all his blood issues, he's quite a bit sleepier than most babies and prefers tummy time for relaxing rather than exercising ;)

I don't know if I've really explained it before, but a big concern with all of Ezra's blood issues is the risk of spontaneous bleeding. It's a very frightening reality to live with on a daily basis, but this past weekend we got brave enough to take our first trip away from home to the coast. It is so scary for us to be too far away from our doctor/hospital, but thankfully for a moment all was well with the world, and he did just fine. We had a great time spending the day together, just the four of us :)

Friday, July 19, 2013


How is it possible that our (first) baby boy is THREE!? With everything going on with "baby brother," we were so excited to make this day all about celebrating Judah. This is the first birthday that he is really excited about...he is SO looking forward to having a "birthday party with a cake." We've been talking about it for many weeks now. He's also been talking about building sandcastles at the ocean for months, so that was on the agenda for today...after finding a big present from mama and daddy at home this morning:

These days Judah could spend hours playing with his cars and trucks. He especially loves his Disney Cars cars. He LOVES watching movies (especially Cars, Madagascar, Toy Story, and Despicable Me) and episodes of Mickey Mouse Clubhouse and Thomas the Train. We held off on screentime for as long as we could, and now that we've started, it's a hard thing to keep in check! Thankfully during the summer there are much more exciting things to do outside which makes it a little easier. He has thoroughly enjoyed our trips to the pool and fountains and we hope once things settle down with Ezra we will have more opportunities for water fun again :)

While this is a challenging time with lots of an emotional outbursts and fits, it's equally as wonderful as Judah is constantly lifting our spirits with the precious and often hilarious things he says. We need to start writing them all down again to add to our list of Judah-isms (stay tuned) :)

Here's a fun Pinterest-inspired list of questions we hope to ask for many birthdays to come:

1. What is your favorite color? red
2. What is your favorite toy? cars & trucks
3. What is your favorite fruit? apple
4. What is your favorite tv show? Mickey Mouse Clubhouse & Thomas
5. What is your favorite thing to eat for lunch? peanut butter &  jelly
6. What is your favorite outfit? Thomas shirt or Lightning McQueen shirt
7. What is your favorite game? get-you, get-you (with daddy)
8. What is your favorite snack? bunny cookies
9. What is your favorite animal? a hippo at the zoo
10. What is your favorite song? The Fruit of the Spirit (song from church)
11. What is your favorite book? Chicka Chicka Boom Boom
12. Who is your best friend? Mama, Daddy, baby brother, and Ashley
13. What is your favorite cereal? "Crunchies" (Trader Joes Brown Sugar Shredded Wheat)
14. What is your favorite thing to do outside? go to the park
15. What is your favorite drink? milk & water
16. What is your favorite holiday? Easter (Easter egg hunts made quite the impression this year!)
17. What do you like to take to bed with you at night? blankie & friends (his stuffed animals)
18. What is your favorite thing to eat for breakfast? mini pancakes
19. What do you want for dinner on your birthday? pizza
20. What do you want to be when you grow up? like mama & daddy

We love you so very much bubba...our hearts overflow with the joy and love you bring us. Happy 3rd birthday!