Ronald McDonald

Officially on the board!

This event was made possible by the generous donation of many.  Be it time, advanced work or physical presence - it took a lot of people to make this even possible and here's the list to prove it.

This is the team that was responsible for all of the "day of" activities.  A good looking crew for sure!

After a majority of the residents had eaten, our team sang "Happy Birthday" to Anna to keep her celebration going.

 There's at least one in every bunch........

 The girls were excited to be first in line for dinner.

Although we did nothing more than show up for dinner, like a normal Saturday night, the team let us crash their picture to let us feel like we helped.

This past weekend, we were blessed to experience a "give back" of sorts.  People in our community rallied together and came to Ronald McDonald House (RMD) to make dinner for all the residents.   Before Jonah got sick, I didn't know much about Ronald McDonald House, just that it was a place for people with sick kids.  I never in a million years would have expected to call one "home", but that's just how things have unfolded.  Ronald McDonald House does everything in their power to meet the needs of families in need.  Almost every day they have volunteers come and make lunch, afternoon cookies and dinner.  They have more volunteers who host evening activities and crafts, again almost every day.  They have free laundry and provide soap, 2 playrooms and a teen room for kids to play in, a rooftop garden and playarea, a full kitchen with a stocked dried goods pantry residents can use.  They provide a new toy for the patient and siblings upon check in and on birthdays.  At Christmas they hosted "Santa's Workshop", with a wrapping station, where parents could select up to 3 gifts/child, just in case life made shopping too complicated.  They have discount tickets to all sorts of things and the most compassionate helpful staff you could ask for.

Ronald McDonald House strives to be a "home away from home" for families in times of crisis and medical need.  Our family has been richly blessed because of their mission and this experience we're experiencing would be infinitely more stressful without the Ronald McDonald House.  If you are every looking for a way to "give back" in a meaningful way, please consider RMD, I promise your efforts will touch a family in need.

A special "thank you" to those who made this serve possible either with a monetary donation, scrubbing potatoes at home or showing up to serve.  It was special to feel like part of giving back to a place that's given us so much.

Research Subjects

This picture of Jonah has nothing to do with this post, it's just a funny picture.  The first thing he ate this round after his appetite came back was 3/4 a chocolate chip cookie ice cream sandwich with chocolate ice cream.  Here he is in his food coma of deliciousness.  Boy is such a goof!

A unique part of having a brother in the hospital?  Noah & Anna got to participate in a research study that will someday benefit kids like Jonah.  The researchers are observing how much energy healthy kids use to walk and then will work on ways to help kids in rehab be more efficient.

Celebrating 7

Happy Birthday sweet girl!

These two have always gotten along very well.  These days the sweetness between them is almost too much.  Jonah (with a little help from Liz) made Anna a birthday card, and as she was reading it, he said, "I'm sorry my writing's not so good." and without missing a beat, Anna replied, "It's perfect!".  My heart melted.  Even in the midst of hard, even at 7 - she gets it, she knows just how to love her brother in a perfect way.

Here's the movie crew.  Although they're standing by the Zootopia sign, we saw Norm of the North.  The kids may disagree with me, but I advise all adults to save your money and wait for this one on Redbox.

Birthdays with kids are always a big deal - when you're young, getting older is awesome!  Now especially, I appreciate the gift of a birthday - the chance to celebrate a life, the chance to celebrate getting older.  I think it's important to celebrate the occasion in a way that honors the person, so no two celebrations look the same.  Anna just turned 7, and small and select is the way to honor who she is.  We had a family celebration at RIC (Where else would we have a birthday? Blessing that we're always at RIC for the birthday instead of trying to work around Lurie's visitor restrictions - small mercies from God in the midst of it all.) that was low-key and perfect.  The following day, we had a "party" of a few friends and movie.  Anna felt celebrated, known and loved - and a little bit older after it was all over.

Anna is growing into an amazing girl.  She continues to demonstrate great depth of thought and consideration, she has a warm disposition, is able to compromise and consider other people in her decision making.  Anna is silly and smart - she enjoys reading, playing video/computer games, drawing, dressing up and creative play.  She knows what she likes and confident enough in herself to not often be swayed by the crowd.  We are so blessed to have her in our family and look forward to knowing her more as the years unfold.

It's Hard For Him

This is Jonah after a recent platelet transfusion.  He was so tired he feel asleep in the lobby of Lurie while we waited for the RIC shuttle to pick us up.  His wheelchair doesn't have a chest strap because he doesn't usually need one.  On this day, I had to hold his torso up so he didn't fall out of his chair he was so tired.

This weekend Jonah's counts have started to recover.  We haven't drawn labs to verify, but we can see it as his appetite returns, his attitude improves, his desire to walk resurfaces and he wants to play. Every round I have to remind myself - as his counts are, so Jonah is - when they're down, he's down, when they're up, he's up.

The downs are getting harder for him though.  He's been on this rollercoaster of ups and downs for 6 months, so it makes sense, but it's still hard.  For 185 days, he has been a patient.  "They" have laid out the "have to" activities for him - wear knee immobilizers for 30-60 min a day, wear an eye patch for at least an hour a day, apply eye ointment every 3 hours while awake, take meds 2-3 times a day with up to 6 meds at a time, stand for therapy, walk on the treadmill for therapy, brush his teeth or at least rinse with spicy mouthwash, take a shower or at least conceded to a bed bath, have his central line dressing changed at least weekly, eat anything.  He has so little control over all the things he "has" to do.  When he's down, everyone of them is a fight to some degree - he feels crumby and so very tired.  It's easy, in those moments, for me to get really frustrated, as my days are peppered with small squabbles over important things, then I think about how hard it must be for him.  As I lament about not having control over being able to make summer plans, Jonah doesn't have any control over anything.  When he feels good, his amiable kind spirit plays along, but when he doesn't - he's angry and annoyed and frustrated.  The cracks that he feels are different than the rest of us, but he's feeling them too.

As we go into cycle 6, we expect a big down for weeks.  Please pray for my boy - that in this big down his spirits are protected, that we can navigate all the "have to" activities full of grace, compassion and patience.  That we will find the sweet among the bitter, that we will be creative in navigating the hard and that God, who is able to do immeasurably more than we ask or imagine, would be our ever-present help and source of great comfort.

Moving to the Rhythm

Lauren, ready to stand up for the change that she believes in, even at 8.

Could you resist a face like this at your door raising money for kids with cancer?

Here is Kelly and her family.  Despite their early starts, you can see that both of her children and thriving today.  The best part of this family is that their insides are even more lovely than their outsides.

Sometimes, in the busy living of our own story, we forget to look up and see the ripples - the way Jonah is touching other stories.  We forget that other people love him and are watching and cheering him on, and in that, God is transforming other lives too.  Here is a chance to look up and tell a few stories.........

The first story is about our 8 year old friend, Lauren, in Colorado.  Back when her parents lived in Chicago, we were all in small group together, so we've known them for years.  A couple of summers ago, they decided to join us at Kanakuk Family Kamp and the kids all jumbled together and worked on building their own relationships.  Jonah's illness bothers Lauren, so before the holidays she started pestering her mom to do a fundraiser to cure cancer.  Her young, optimistic heart isn't looking for a treatment but a cure. Her mom wanted her to wait until after the holidays, so on a playdate right after New Years, she and a friend went door to door collecting money for "childhood cancer".  Lauren has great courage and conviction, so when a door was shut in her face, she knocked again and told the resident that that was rude and that they needed to support childhood cancer.  Lauren raised $38 with her unsanctioned fundraising.  With a little direction from mom, she is now planning a dance-a-thon fundraiser later this year.  I love seeing God grow compassion, social action and empathy into the hearts of children we know.  I love how their unbridled enthusiasm both focuses on changing one life but also changing the big picture without the limits adults set.

The other story to share is about our friend from Boston, Kelly, who both a great photographer (if you're looking for one in Boston) and a runner.  You can see in the picture above that Kelly has two healthy happy children in her family.  What you don't see is that both were born between 24-29 weeks.  Kelly knows hospital life - the hard, the hurt and the hope.  This year, Kelly is running the Boston Marathon - the world's oldest annual marathon and one of the most prestigious out there - in Jonah's honor.  She is running to raise money for the Claudia Adams Barr Program in Innovative Basic Cancer Research at Dana Farber Cancer Institute.  Barr investigators have made numerous breakthroughs resulting in improved survival rates and quality of life for patients everywhere and these funds will provide valuable seed funding for novel investigations that precede new clinical innovations.  Dana Farber was the hospital that we got our second opinion at regarding Jonah's treatment plan, so even though we're not at Dana Farber, we hold it close.  Cancer research matters, and Kelly is hoping to raise $10,000 towards a team goal of $5.2 million.

Both of these stories are of course about rasing money on one level (if you want to support Lauren, let me know and I'll hook you up with her mom, if you want to support Kelly you can do so at http://www.runDFMC.org/2016/kellylorenz ), but on a more important level, they're about the heart.  They remind me again of this quote from Leslie:"We can stare at where the jewel was dropped and focus only on that space, or we can look at those ripples and see what God is doing. We ache for the drop of that jewel but we still get to see what God is doing" . These are the ripples of what God is doing in other people through Jonah.  It's hard to look up from where our jewel was dropped, focusing on the space of treatment and the hospital, but these beautiful ripples remind us that God is working, and that we are blessed to be able to look up and see them.

Cracks

Although Amy was only with the kids for a short while because of Jonah's fever & neutropina, she managed to snap at least one picture of each child that captures their essence.  Here we have Julia, a little spicy sweet and silly all rolled into one.

Noah, posing cooperatively, responsibly ready to go, becoming a man right before our eyes.

Anna, a bit more reflective, observing from the outskirts, but ready to warm you with her smile and deep caring.

I love that boy so much, I could kiss the top of his head endlessly. There's a sweet reminder on his head these days - fuzz is growing back.  Cycle 6 should see to it's departure again, but for now, it's an anchor to the hope of days ahead.

Many posts ago, I mentioned the Beads of Courage program that Jonah is participating in.  This is what his bead collection is shaping up to look like.  Yellow for nights in the hospital, green for TPN, red for transfusions, light green for tests like MRIs, CTs, etc.

Skinny cowie is an ever faithful friend to Jonah and always close by.

This is the type of friend these girls are - the "put your feet in my lap so I can sit on the bed with you" type of friends.

These girls have known Jonah since before he was Jonah.  They've watched him grow up and love him deeply.

These faces, these hearts - I don't know why God would bless me with such goodness, but I'm thankful He has.

This is hard - this journey that we're on - and I hate that every post seems only to serve as an outline for a different angle of hard.  I guess that's the truth of it though.  This journey isn't something that you adjust to and recalibrate your norm to - it's always raw, always heavy - even when you find your groove, the pain and challenge of the journey are just below the surface.  It's amazing to me the new facets of the journey that trip me up with their scariness, their hardness or their sadness.

This past weekend, my good friends, Amy & Laura, from Boston came to visit.  It was a beautiful visit - filled with laughter, massages, at home Zumba, meals together and great connection.  We connected over the things good friends connect over - life and kids and hobbies and then we connected over the last 6 months.  We talked about the things that you don't say or ask over the phone, we shared the burden of pain and glassy eyedness of tears, we marveled at the progress Jonah is making and the resilience the other children demonstrate, we wondered together about the future.  It was a visit that filled my soul and surprised me with the hard.  These are some of the friends that we really "do" life with - we laugh together, talk about things that matter and play hard together - we never waste our moments.  Their physical presence in our story was both encouraging and another reminder how real this is.  In the past, when we part company we all go home.  This time, when we parted company, they went home and I stayed at the hospital, my new home.  I wouldn't trade a minute of their visit, but it did remind me that pain and promise are often hand in hand.

One of the layers to the pain and promise juxtaposition that the visit brought up, is that these friends are Avalon, NJ friends.  I have long referred to Avalon as my favorite week of the year, the chance to be with friends so dear in such a special place.  As our love for Avalon is not unique, now is the time that we have to commit to our annual June vacation. But we can't.  Even though Laura's son, Sam, and Noah spent 40 minute on the phone plotting how to spend vacation together, we can't.  Everyone else can, but we can't.  Between now and June there are too many unknowns with Jonah that make committing impossible - where will he be in the radiation cycle, which is dependent on when radiation starts which depends on both when the stem cell cycle starts (which is dependent on how his counts recover now) and how quickly he recovers.  Then of course we have to wonder about his physical capabilities - will he be walking or in his wheelchair, how will he manage stairs, can he get wet (central lines cannot get wet and he currently has a central line), will he still be on IV feeds overnight, how do we manage transportation over sand?  Around and around we spin and always land on the realization that we can't commit and my heart breaks in a different way.  Avalon is a part of the rhythm of our life, and our rhythm is all out of whack.

As I said though, hard is at every turn, so that is not the only hard.  We are days away from our final pre-stem cell MRI & lumbar puncture (January 28th).  These are the last hurdles to qualify for the mountain of stem cell transplant.  This is also where our friends, Noah's family, had the bottom fall out, when they found tumor re-growth.  I want to be stoic and rational and let it not be a big deal, worried that his family will feel inappropriate guilt about impacting our experience.  I am deeply grateful for their continued friendship as they keep walking with us when it would be easier to bow out.  The challenge though, is experience and exposure are fast teachers in this world, and these weeks will be peppered with times of anxiety.  It is during this time that I again lean into the words of Joshua 1:9, "Be strong and courageous, do not be afraid, do not be discouraged for the Lord your God is with you wherever you go." (rough paraphrase)  I am afraid.  I'm afraid we won't make it to stem cell.  I'm afraid we will make it to stem cell and it will be as hard as everyone says it could be.  I'm afraid of the radiation that waits beyond stem cell transplant. And I'm afraid of what is beyond that.  I know I shouldn't be, as God keeps showing up in our story, as if to say - "Hey, I told you'd I'd be with you all along", but I am.  There's no pretty bow to tie on it, and it feels messy, but it's honest.

This is a lot.  I wish I could say that these are the only hards of the moment, but that's not how this season is.  These are the two biggest and heaviest hards right now though and they're ultimately both about letting go.  Letting go of control that is only imagined and never real.  I cannot make Jonah well enough to ensure we can go to Avalon.  I cannot make Jonah sail through stem cell and radiation.  Let's be honest, if I had that kind of control we'd never be here in the first place.  Instead, my one bit of control is to rest in the truth that God is God and I am not. It is the sovereignty of Christ that knows our path, will walk it out with us, wherever it goes and will see us through to the other side of these hards.

Unexpected Changes

Not only do we have a family of visitors and support for Jonah, but our support network is board.  The UIC Flames Swim & Dive team were in Florida for winter break training and wanted to show their support from warmer weather.  They are just an example of how supported Jonah is in his journey.

There are lots of ways in which you would expect this journey we're on with Jonah to change our family.  How we vacation, foods we eat, how we spend our time, the value of community, the value of present over perfect, how we relate to and understand God, the depth of our faith, our ability to be compassionate and to extend grace and on and on.  All these things are true, and will forever represent the battle scars - the beautiful and the hard- from this time.  There is however one change in our hearts and understanding that I would have never expected, never categorized in the "things that change when your child has cancer" category.  The unexpected change, is our heart for the parent-less.  Occasionally at Lurie, and more often at RIC, we meet kids - sweet, young, delightful kids - who don't have parents in their lives.  It blows our minds and breaks our hearts.

We are blessed beyond measure to be able to have a loving educated adult with Jonah all the time.  It is not without sacrifice on the part of our whole family, but we couldn't imagine doing anything differently.  This constant companionship also allows us to better advocate for Jonah and catch errors in his care.  This constant companionship statistically will improve Jonah's chances at recovery, especially from a rehab perspective.  

Then one day "Baby N" showed up at RIC all alone, a cute 2 year old little boy with a surgical scar on his head.  A few weeks later, "Baby A" showed up, also alone, a sweet little 7 week old boy.  We then realized that "D", a 16 year old boy recovering from a gunshot wound, was also alone.  These kids have no visitors, no one to advocate for their care or catch errors.  They have no one to eat meals with, to cheer on their accomplishments, comfort their sadness, wipe their tears, play games with.  "Baby N" and "Baby A" have no one to snuggle with, no one to make silly faces at them, no one to marvel at how quickly they're growing up.  All they have is the staff.  And now they have us.  Hospital policy regulates how we can interact, but when we're at RIC, "Baby N" joins us for meals or he and Julia will watch movies together or play in the kiddie kitchen.  We coo at "Baby A" and we try and "see" "D" instead of write him off.

Somehow everyone knows "about" foster care and the great need, but at least for us, it seemed far away, in another world.  Now we see that it's in our backyard, it's not far away.  There are kids everywhere, looking for someone to love them - to not define them by the circumstances of their birth, someone to give them a chance in life.  Obviously we're not in a position to do much more than love and minister to the kids put immediately in our path, but who knows what the future holds.  The other thing we can do, is help raise awareness that these kids exist, right here, close by - waiting for someone to "see" them.

5 for 5

This is how Jonah felt about being back at Lurie so soon.  He spent most of his time in the ER hiding his face and cooperating only begrudgingly.

Jonah finished his 5th round of chemo and transferred to RIC on Thursday evening.  We hoped against hope that he would be spared a return pass to Lurie with fever & neutropenia, but alas, Saturday afternoon he spiked a fever and back to Lurie we returned.  He has tested positive for paraflu (which is basically like a cold) and not much else, so although he's feeling pretty crumby, it's pretty under control.  Prayers for a quick recovery would be appreciated so that Jonah can get back to RIC and therapy away until he has to return for cycle 6.

Auntie Leslie

Proverbs 18:24 says, "Friends come and friends go, but a true friend sticks by you like family."  This true friend is of course a reference to Christ, but God also grants us friends like family here on earth, which is blessing beyond what we deserve.  We have been blessed through the years with many wonderful friends like family, but I want to take a minute to highlight our very good friend like family, Leslie.  

Leslie lives in Boston and within a week of Jonah's diagnosis, she was on a plane to be with us.  Those were crazy blurry days, so I don't remember a lot of details, but I remember she came, she sat in our sorrow, she loved our kids, she brought me coffee every morning and she didn't need anything.  A few weeks later she came back again.  This time, Liz was on vacation and we needed extra adult hands.  Leslie stepped in and filled the gap, helping the kids get to their different activities, getting homework done and making the kids feel like they matter.  Recently she came back again.  This time she enjoyed time with the family, making memories and playing games.  Already she's talking about coming back in the spring.  A friend like family.

Leslie is the one who turned me onto Kara Tippetts, a women I obviously never met, but spoke words that resonate deeply with me.  She texts often and offers me mindless distractions with online Qwirkle.  She reminds me to keep my eye on Christ with stories like this:

When we talk about dropping a stone into the water, we often talk about the ripples we see as a result. But what if it's not a stone that drops in the water? What if it's one of your most precious jewels that you love and value, and that is what is dropped into the water? From that we have two choices. We can stare at where the jewel was dropped and focus only on that space, or we can look at those ripples and see what God is doing. We ache for the drop of that jewel but we still get to see what God is doing . . 

Blessing upon blessing is this friend.  I'm sure she's red in the face at so much attention, but sometimes you just have to face the truth.  Thank you Leslie for being a friend who is sticking by like family.  Thank your for the sacrifices you are making to literally walk this journey with us, thank you for being there to help carry our umbrella.  Thank you also to the many benefactors (you know who you are, and I mostly know who you are) who have made all of Leslie's trips possible. You have helped pay for plane tickets, taxi cabs, my coffee habit and more.  We recognize your support of Leslie as support of us.  We know that with your kids at home your presence is much more complicated.  Sending Leslie as your gift of love is an overwhelming blessing.  

We may never actually deserve the friends that God has blessed us with, but we will be forever grateful.  

Leslie and Noah goofing around

Ohhh, Anna & Leslie aren't too sure about this picture

At the beginning of this journey there was a lot of waiting in the family room.  In these days, Jonah was in the PICU and the number of bedside visitors was restricted.  We had a lot of visitors during the PICU days and the kids spent a lot of time waiting in the family room.

Sweet hand-holding

The kids made their own moments during all of their waiting

These early pictures are hard to look at, hard to remember, but they are part of the journey that we're all walking together.

 Jonah, Cowie & Kyle having a meeting of the minds.

Julia's always good for a selfie

As is Anna

Jonah's earliest laughter was brought on by minions.  He found it especially delightful that Kyle wanted to eat the minions

Everyone loves Kyle

Sometimes walking this journey does actually allow for a little sunlight, and always coffee!

Leslie caught the kids enjoying a special moment together

Jonah and Kyle having a conversation.  Jonah loved that Kyle was wearing his #teamjonahgoodall shirt

Leslie loved that Jonah was "all in" to his sensory play at RIC

Glasses twinsies

Ahhh, this is only a temporary good-bye

In the Middle

Happy New Year!  This is of course the time of year where magazines, newspapers, memes and Facebook explode with ways to become your best self.  Everyone everywhere takes the turning of the calendar as an opportunity to plan a fresh start - eat better, exercise more, read the Bible, be kinder, get organized and on and on.  People close the old and usher in the new.  To be honest, I've never really been one for new year resolutions because they rarely stick (sorry those of your who are still going strong on day 4), and January 1st is no more magical then any other day of the year.  This year especially, all these resolutions feel off.

We are in the middle right now.  The old that we want to close is not yet ready, nor is the new ready to be ushered in.  We cannot yet close the chapter on Jonah's treatment, as although we've got about 23 weeks behind us, we've got about 20 weeks ahead of us.  We cannot yet usher in the new chapter, as we have little idea what the next 20 weeks will bring.  There are no resolutions in our family this year, which is not uncommon as I said I don't often make resolutions, but this time it's for a different reason.  We are heads down, one foot in front of the next, trudging through - unable to resolve to more than that.

What are we trudging through right now you may wonder.  Jonah is in the middle of cycle 5 right now.  Getting to cycle 5 took a little extra time this round as Jonah's counts were slower to recover, (thanks in large part to one of the chemo meds - cisplatin) so we were a full 2 weeks delayed.  At the beginning of every round we do an audiology test, as cisplatin is also known to cause hearing loss, and this round revealed the loss we were dreading.  He can still hear out of both ears, but all the pitches are impaired to some degree in the right ear and a few high pitches are impaired in the left.  Because of this, we will be reducing his cisplatin dose this round.  As his counts were lower going into this round, he's already feeling it more and is resting a lot.

After cycle 5, we anticipate starting cycle 6, the big guns with the stem cell transplant, on February 1st.  There is a busy box campaign going on for those of you who haven't heard, to help keep Jonah busy during his 30 days of isolation.  Conversations about radiation have started too.  Everyone wants to get cycle 6 underway before we move on to thoughts of radiation, but a few conversations have started.  He'll likely get a 4 week break after discharge from cycle 6 and then start 6 weeks of radiation, 5 days a week.  Then we wait, we watch - we see if treatment brought Jonah to a place of remission, we see if the disease will reoccur (which it loves to do), we see what the short and long term effects of treatment will be.  Maybe then we can start to make some resolutions, but until then we are in the middle.