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.




Sunday, October 6, 2013

MEET EZRA: WEEKLY UPDATE

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 us...in 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 every.single.day. 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 this...it'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.