Hope

For Mother's Day this year, after a compelling message about being brave, our church gave away key necklaces to all the women in the congregation.  Each necklace had 1 of 3 words engraved on in - Hope, Love or Courage.  The intent of the necklace was to keep it until you encountered someone who needed the word more than you did.  Because the message had been on bravery, "Courage" was the first of the keys to be out of stock.  Everyone had connected with the message and saw a place in their life that they needed more courage, myself included.  We were just starting the journey with Jonah and his EoE and it felt overwhelming.  As I couldn't get the word I thought I needed, I took "Hope".  As "Hope" wasn't "my" word, I quickly passed the necklace onto someone else who needed it more than I did.

Fast-forward just a few short weeks, and we entered this much more complicated journey we're currently on.  It wasn't long before I was given a few "Courage" key necklaces as people all throughout our community were trying to encourage and support us.  It seems fair that courage would be required for this journey, as we face so many things that are harder than we ever dreamed.  For better or worse though, I have always had the motto, "It is what it is".  There's so much you can't control in life, and so you impact the change you can and let go of the rest.  Because of that, courage hasn't been the word I've actually connected with, but I didn't know what my word was.  Then, one day a few weeks ago some friends gave me this bracelet - Hope - and I cried.  That's my word.  I know the hope that does not disappoint is the hope of heaven, but there is also regular good 'ole fashion hope that can fuel these hard days, and that's what I need, and God knew that on Mother's Day.  He was laying the foundation to remind me that it's hope I need and not courage.  He's wired me to need hope over courage.

Today, another friend gave me another bracelet with the word "Hope" etched into it and I cried again.  Despite all the great strides that Jonah makes, my hope bucket is always alarmingly low.  It's as though God knows how dangerous I find good 'ole fashion hope, as after receiving the second "Hope" bracelet today, I also got 30 hope-inspired quotes.  Without people knowing that I need the reminder that hope it ok, the reminders keep coming.  As dangerous as hope may be, it's ok to hope.

And then, as I'm putting Jonah to bed tonight, his little voice pipes up, "Mummy, I'm glad God gave me you." and I know that there is a place for both good 'ole fashion hope and the hope of heaven in our story.  Jonah knows where he comes from, he knows where he's going (as much as a recently turned 5 year old can) and in that there is great hope.

French Bread

Noah, Julia & Anna getting ready for our holiday tea at the Drake over Thanksgiving break.

When Jonah is feeling well, he's nothing short of a goof.  Here he's "trying out" slinky hair.  We're also working on patching his "good" eye to help his brain realize it should start using the other eye too.

She didn't know, she was just trying to sympathize with me, but with six words our waitress at a little diner nearly undid me - "It's ok, you've got 3 kids".  I had meant to order french toast, but said "french bread".  I just said the wrong thing, it happens sometimes, so I made those "silly me" eyes and our waitress tried to connect, likely a mother herself, and for a minute I couldn't breath.  I don't want to spill our story everywhere we go, I want to be "normal", but I want people to see Jonah too.  I don't want to be seen as a "mom of 3 kids" when I'm a "mom of 4 kids".   I guess I should be surprised it's taken so long for someone to assume I'm the mother of 3.  For most of the last 20 1/2 weeks I've looked like a mother of 3 to people who don't know our story.

This journey is just weird.  I'm sure there's a better, more descriptive word, but weird is the most encompassing word I can think of right now.  I honestly fear becoming 1-dimentional as Jonah's story defines a lot of who I am right now.  When I don't talk about Jonah, or how Jonah's diagnosis is effecting the rest of the family, I often don't have anything to say.  I want to be "normal"- to have lots of things to talk about - but the second a stranger doesn't see the truth of our family I want to right their understanding of us.  That opposite pull of being "normal" but being "us", makes me think of our 2 different friends who lost their sons this fall.  There is a great pull for them to establish new norms and routines, rhythms and rituals, but there is equally a great pull to remember, to speak the names of their sons, to remember the silly and mundane routines, rhythms and rituals of their lives.

Other than realizing that I may have an addiction to using "quotes", I'm not sure there's a great take-away from the weirdness of always being pulled in different directions.  Sometimes, no often, I stumble as we navigate this journey and I'm again reminded that I'm called to live step by step, moment by moment, and so I smile weakly at the waitress, wipe my eyes and enjoy breakfast with the 3 kids (and my husband) who are at breakfast with me.

Personal Style

This is quintessential sleeping Jonah style - before his diagnosis he would frequently fall asleep with criss-cross applesauce legs and his head in his lap.  How that ever was comfortable is beyond me.  There was a lot of sweetness in seeing him do such a familiar weird thing.  I actually added the pillow in his lap because the position looks so uncomfortable to sleep in.

Jonah was testing out his personal style preference for how he would wear his new Northwestern hat. He tried all three positions and then decided that brim back is his favorite way.  I'm know I'm hugely bias, but I think he looks cute no matter how he wears his hat!

Another piece of Jonah's personal style is going to be a wheelchair.  He had his first wheelchair "seating" this week.  I have to be honest, I wanted to pretend that I forgot about the appointment and hide.  I'm not ready to think about Jonah needing his own wheelchair and all the implications that come with that.  His PT assured me that we're still working towards walking goals for Jonah, but she did try and help me understand that his walking will be slower and his stamina (at least in the near term) will be decreased.  The wheelchair will allow Jonah to have a level of independence in situations where we need to go a longer distance or a faster pace.  Jonah of course has maintained his happy-go-lucky disposition and is excited about his own wheelchair.  I'm trying to take my cues from him, as if he can be happy in a wheelchair, I can be happy standing next to him.

In terms of an update - we have yet to experience an uninterrupted between chemos time.  The Saturday after Thanksgiving, Jonah was rushed back to Lurie with a fever and what ended up being 3 different infections.  He was back for about a week and then was allowed to return to RIC on his birthday.  He is back at the hospital of his choosing and happy to be living the RIC life.  We expect that he'll go back to Lurie for round 5 sometime between the 28th-30th.  Although he will still require in-patient care, we are hoping to sneak out of RIC for some sort of TBD family Christmas.

Turning 5

Jonah turned 5 last week and it was filled with much fanfare and fun, despite the circumstances.  This season of life is teaching new lessons about what celebration looks like.  Celebration doesn't need anything other than ordinary - it doesn't need glitter, confetti or special plates - celebration is a state of your heart and soul, gratitude realized.

As Jonah opened some birthday cards, Julia snuggled in and snuck a little TV.

Jonah was able to transfer to RIC on his actual birthday, which was the best gift Lurie could have given him as he much prefers to be at RIC.  As a reflection of the heart of RIC, they hosted a doggie/Cars themed birthday party for him and invited the whole floor.

Many of you participated in a birthday card drive for Jonah.  The original vision was to lace the cards up bunting style and decorate his room.  The cards came in so fast and furious that the original idea became an overwhelming craft project, so instead, they're all hanging in a bag right now.  Even now, almost a week later we've still got cards coming in.  We also received a number of sweet birthday videos, all of which were heartwarming and special.  Thank you to all who participated, there were so many cards that the act of opening them has become a daily activity and a reminder of the community that cares.

Anna can always be counted on to help open presents, and this birthday was no different.

Jonah got some extra birthday company with a few of the UIC Flames swim team, which adopted Jonah as part of the team earlier this fall.  The girls and coach joined the RIC festivities and helped all the kids with crafts and nerf gun wars.  Great fun was had by all.

For his actual birthday, Jonah got Sprinkles cupcakes.  For his RIC party they had a Cars cake to add to the fun.

Here's the whole family crowded around the birthday boy while he opens gifts.

It took days to get through all the birthday cards.  Here we're reading a homemade card from a friend.

A proud mummy & daddy and their new 5 year old boy.

Even Liz got into the poising action for a birthday photo, which almost never happens.

Lots of birthday cards had "bonuses" that have been lots of fun to play with.  Here Jonah sports a mustache and a Minon singing watch from some friends.

We have a family tradition that on the morning of your birthday you wake up with that number of balloons in your room.  Jonah loved his 5 balloons and thought it was fun to get tangled up in them.

Willie, the Wildcat (NU's mascot), came to visit Jonah on his birthday and share some extra sweet NU swag.  He got a football signed by the head coach, a sweatshirt blanket, lots of hats, a water bottle and on and on.  The visit was a fun distraction and a great way to make the day special.

The Hardest Peace

A few posts ago I mentioned that I had recently read Kara Tippetts book "The Hardest Peace".  One of the things the book highlighted for me, is that a lot of those random thoughts that strike me in the quiet of the evening are not wholly unique and original.  I'm not being dismissive of my own intellect, there is great comfort in knowing that when confronted with cancer others have trodden the same paths and also found God to be good.

Here are a few sections of the book that resonated deeply with me and my correlating thoughts
(this is long, so feel free to tag out).......

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"..it can be exhausting work to live in the midst of your brokenness all the time.  Some days we want to just be normal.  I don't want to be a spiritual giant facing a terrible disease.  I want to be a mama, a wife, a friend, a member of a community.  I get far too much credit for faith when all I'm really doing is sharing my weakness with honesty.  I'm not the only one facing hard moments, I'm just writing about them."

Simon and I joke that we sometimes share a brain, our thoughts are so in synch.  In this moment, Kara and I must have been brain sharing.  Most days I just want to be normal.  This road is so much harder than you imagine it might be, with pitfalls and booby traps waiting to undo any normal you can construct.  People will say, "I don't know how you do it.  I wouldn't be able to."  The thing is, I only do it because I have to; and it must be by God's strength for the day that I can, because I don't know how I'm doing it either.  I have never been more aware of my brokenness than now.  It is through honest reflection on my struggles and weakness that God is moving me along.  His grace is sufficient for today, and that's all I can manage.
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"...Jesus knew the prayer of my heart was something like a Jabez prayer (referencing the early 2000 phenomenon book about the prayer of Jabez boiling down to plenty without pain), that I would not have any more cancer, that the pain would go away.  But that's not what He's promised.  It is His presence that is sure, so I trust Him."

This passage reminded me of my thoughts about pain and promise and that the promise I trust in isn't healing but heaven.
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"My story has had a plot change I never expected.  Actually, it's been more of a plot twist, that word being much more descriptive of how it's felt.  No one ever imagines disease, heartbreak and horror in their story."

We have been walking this plot out for over 18 weeks now.  I can talk CBC, ANC, TPN, mag, phos & sodium levels, emesis and antiemetics and on and on with the best of them.  Hospital staff ask me if I'm a nurse, these things just roll right off my tongue, and I actually know what I'm talking about.  And then out of nowhere it will hit me - Jonah has brain cancer - this isn't some bad dream that I'm going to wake up from, I'm not some Hollywood actress on a TV drama - this is my real life.  This is a plot twist wasn't in my script, but my role is to see it through with honesty and authenticity.
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"I can say that cancer and suffering give the beautiful gift of perspective.  It is the gift you never wanted, the gift wrapped in confusion and brokenness and heartbreak.  It's the gift that strips all your other ideas of living from you completely.  The beautiful, ugly raising to the surface of the importance of each and every moment."

It almost feels cliche to say that I see a gift in the plot twist of cancer, but there is honest truth in it.  In this terrible plot twist, there is rich blessing.  The little niggly things of life are put in their place and being really does overshadow doing.  There are seasons of normal life where you can refine this, but when you have 2-3 hours a week to focus on your marriage and 2-3 hours a week to just be, you figure out being versus doing.  You learn who will just sit with you in your scared heartbreak, who you can do the hyperventilating ugly cry in front of while they cry with you.  You accept, with a full stop, that the theme of the PTA membership drive isn't really a big deal - no buts about it.  You get to see how God shows up as a still, small, but strong and might voice in the midst of a storm.  The gift of perspective comes only when you're stripped of the ability to maintain facades or care what other people think and are forced to define what really matters.
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"I ate and ate on the joys of parenthood with no thought of it ever coming to an end."

I once saw a necklace that was imprinted, "If you think my hands are full, you should see my heart".  I love life with 4 young children.  Sure it is crazy most of the time, and the adjective mostly likely to be used to describe our family is "loud", but every night my heart is full with the blessing of parenthood.  Parents aren't programed to think about the end of parenthood, and now I see flickers of a different future that is muddled with heartbreak I can't imagine seeing through.
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"Trusting God when the miracle does not come, when the urgent prayer gets no answer, when there is only darkness - this is the kind of faith God values perhaps most of all.  This is the kind of faith that can be developed and displayed only in the midst of difficult circumstances.  This is the kind of faith that cannot be shaken because it is the result of having been shaken."

Almost right away, I recognized that my faith would be shaken through this.  It was important for me to explore my faith - to poke and prod - and make sure that it was firm before the end to this journey was written.  It would be too easy to wait - wait for the happily ever after and retrospectively find the growth in the story, but that seemed an insincere faith.  And what if there is no happily ever after?  Did I want a faith dependent on outcomes?  No one would confess to that, I'm sure, but I needed to be sure I wasn't harboring my bargaining chips with God.  It is in the working out of my struggles and weakness, working through painful questions, that I know my faith is secure. Life is too hard right now to even try and pretend, to have pretense with God.  I have been unable to prevent myself from revealing my ugliest, weakest, most broken self to God and as painful and humbling as it is, this shaking is cementing what I know to be true.  Faith firm despite outcome.  
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"We cling to the shadow of the story and forget the light in the story.  We love the shadow.................Longevity is not the answer, but it is my soft heart's desire."

My attempts to add to this thought are lacking.  It called me out as a shadow-clinger and challenges me to long for the light in the story.
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"Stay close, be there, and if the answer isn't yes, trust God that the story is good."

And if the answer isn't yes, trust God that the story is good.  Lean into the sovereignty of God.  This short little line is bit like a mantra - a reminder - trust God that the story is good.  Hard? Yes. Scary? Yes. Overwhelming? Yes. Sad? Yes. More than I feel capable of? Yes. Good? Yes, that too.
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Wow, if you're still reading, you deserve a gold star or something!  Honestly, this post has mostly been for me - a quick(ish) reference guide to some thoughts that are at the core of this journey for me, articulated by someone else.  I will be forever changed by Jonah's cancer and that is the brutiful (a Glennon Melton word) truth of faith walking through heartbreak.

Thanksgiving

This year, Thanksgiving looked different from every other year due to our unusual circumstances.   There was thanksgiving in the "different" as we made memories to last a lifetime as opposed to having another year that blends into the rest, although we also look forward to blending more ordinary years together too. 

Jonah transferred from Lurie to RIC on Thanksgiving, which allowed us to share a Thanksgiving meal together as a family.  Granny did all the cooking and transporting and cousin Anne came in from Ithaca to help oversee the craziness that follows us around.

We started the week by taking the kids to see the Charlie Brown Christmas play.  Julia was especially excited as she thought she was going to get to dance on stage.

Noah started less impressed as he thought he was going to have to preform "50 Nifty United States".  Noah preformed this song for his recent Veteran's Day show and there was a lot of practicing as he wanted to get it right.  If you don't know the song, you should find it online and listen to it 1,000 times and then you too will have all the states memorized in alphabetical order.

The best part of children's theater?  You get to meet the cast after the show!  Above is Charlie Brown and Lucy and below is Linus and Sally.

There is a big holiday lights fest on Michigan Ave that includes a parade with Disney characters.  We got a chance to meet them in person before the parade.

The Museum of Science and Industry is running a "Christmas Trees Around the World" display.  To honor our beloved friends, the Sorensens, from Denmark, the kids posed in front of the Danish tree, which did resemble the Soreneses tree in years past.

We got 8-10 inches of snow during break.  The kids loved that it was daddy that took them home that night so that they could play endlessly in the snow.  As far as I'm concerned, the best part of the snow is that it all melted 2 days later!

We got all fancy one afternoon and checked out the Christkindlmarket and then Ubered over to the Drake for a fancy holiday tea.  Everyone loved the finger sandwiches and harpist.  This may become a tradition that blends into ordinary years it was so much fun!
      

I couldn't miss the opportunity to have some special date time with the "bigs" as our time together is so limited.  Noah and I wandered around Michigan Ave and ended up at the Lego Store with an extra Lego set.  Anna and I got matching pedicures and a snack at Starbucks.

As a child, I loved the book, "The Best Christmas Pageant Ever".  To my delight, a local theater turned it into a play and Anne accompanied us.  The Provision Theater gets a thumbs up for their performance and introducing my kids to a story that I love.

Daddy got really brave and decided to keep the standing tradition of decorating the Christmas tree Thanksgiving weekend with the 3 kids all by himself.  

Preparation for the Journey

I'm It's Simon writing this morning, so it'll be short and less eloquent. 

God prepares you for things and inspires you in amazing ways.  A post this morning from our friend Kathy reminded me of that.  

This time last year we had the pleasure of having Kathy, Greg and their amazing boys stay with us for a week.  I was amazed by the way they cared for their son with Cri-du-chat and I was amazed by the way their older son cared for his little brother.  Little did I know how much strength I'd pull from their example over the year ahead and how much I'd see my kids step up in amazing ways like their son has.  

You can read that post and more about their family at http://kathymcclelland.com/2015/11/selfless-when-it-comes-to-brother.html/

With Jonah we're on a long road and I pray fervently that he'll reach college age.   At that point I'll have to decide what to do with the college fund that I can't stop contributing to every month despite the likelihood that Jonah wil go to college is extremely low.  

We haven't talked about long term with our other kids, but I think about it a lot and I pray that we get to have those conversations and considerations of how we care for him into old age.  In the interim and along the way I continue to be inspired by Kathy and Greg and their story. 

The Wall

Shortly after moving into our new house a few years ago, I came up with what I thought was an inspired idea.  We have this long wall in our hallway upstairs, and I was going to use it to hang the kids school pictures.  We started with each of their 2s class pictures in a column and added the years to each child specific row. How fun to watch the kids grow and easily compare how they look both similar and different at the same ages.

Since Jonah's diagnosis, this wall has been the source of often ignored anxiety and grief.  When I came up with this idea, I'd already pictured the end - Julia graduated high school and 4 rows of 16 smiling faces through the years.  How full of life, beautiful memories captured in a moment, evident growth and change.  The thought that one of those rows could be altered, or ended, didn't even cross my mind.  And now, in the season of 2015-16 school pictures coming home, I wonder.  What do I do with this wall?  Jonah doesn't have a school picture this year, that much we know for sure, beyond that are only questions.  How do I keep this wall going if one of the rows ends?  How do I honor and celebrate the continuing rows and not foster sadness?  Are we prepared to frame this season and the obvious effects it has had on one of the rows?

I really don't know what to do with the wall yet.  I guess that makes sense as Jonah's story is not yet complete.  For this year though, our friend, and photographer, Emily Hernandez meet us where we're at and turned the ordinary and the sterile, the hard and changed into captured moments of beauty that shine through.  She captured the grace and gift of today.  We will frame this season as it is in the fabric of our family's story.  Jonah will look different this year, but Jonah is Jonah and we will celebrate that, just as we celebrate all of the other kids becoming themselves.  As for the wall, I will try and put the worry of the wall away until next year when there is another frame waiting to be answered, in the meantime, I will soak in the beauty of now.

Jonah took this picture.  On the right is "Cowie", Jonah's ever present lovie and companion since birth.  On the left is "Fat Cowie" who was bought at the same time as "Cowie", to have "just in case". Somehow in this season, "Fat Cowie" has made his way to Jonah.  Although he does not replace "Cowie", there is great delight in seeing them together
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At RIC there is a therapy dog, Georgia.  When Jonah's counts are good he is allowed to touch and play with Georgia.  When his counts are low, he is only allowed to look at and talk to Georgia.  If you know Jonah and his love for dogs, you can imagine how he feels about this.  Here he is holding his "Georgia" who he can play with no matter his counts.

I Am Where I Want To Be

Quickly, on the treatment side of things, cycle 4 is off to a beautiful start.  The nausea is at bay and spirits are high.  It's our best start to a cycle so far.  Jonah's body is however starting to show small signs of fatigue with our routine; the audiogram indicated that he has a 2-tone hearing reduction in his right ear, his 24 hr methotrexate (mega chemo drug) level is higher than it's been and on a related note his creatinine levels are more elevated than they've ever been. This is a hard chemo regime, folks on the floor often say that Jonah is getting the kitchen sink of chemos, and the cracks are starting to show.  Even in that, we are grateful that we're off to a smooth start.

When our journey began back in July, it was expected that Jonah would remain hospitalized between Children's & RIC until around Thanksgiving.  As perviously indicated, at a recent care conference at RIC, the door was opened that there's a tentative possibility that hospitalization may look more like March.  No one is sure, but it is on the table.

March.  March?  March, March, March.  As a grown up, I suppose I could do this forever if I had to, and I certainly would for Jonah.  When you're 8, 6 or 3 and your parents almost feel more like visitors in your life instead of regular players, March is a lifetime.  I see it, the deep longing of my other children to have their mum & dad, really have them - to see them off to school every morning, greet them off the bus, help with homework, to referee the squabbles, kiss them goodnight and comfort all their bad dreams.  Their cracks are showing too.  They try and not ask, they try and not cling, but they're just kids and sometimes the longing is too big to contain.

It is in the breaking of my heart that I realize I am always where I want to be.  When I am with Jonah, I love being with Jonah and don't want to leave, think it will be too hard - what if something happens while I'm away, what if he needs me, what if I miss some big development again (his first returning sentence was spoken as I was pulling into the driveway at home)?  When I am with Noah, Anna & Julia, I love being with them and I don't want to leave - I want to see them off the bus, watch Noah at basketball, Anna at gymnastics, Julia at dance, I want to have a regular bedtime routine with them and get my moments back that are so normal, but also the fabric of relationship.

I am reading The Hardest Peace by Kara Tippetts.  Kara had 4 little girls and was diagnosed with stage IV breast cancer.  She wrote her book while walking her journey towards the end of life.  It doesn't take a genius to see why I would relate to aspects of her story.  There are many quotes from the book that stick, but on this heartbreak of the tug of time, she says, "Too much reality for too tender an age.  I cannot change the story, I'm so ill equipped to protect her (them) from our pain."  And that's my reality - I cannot protect my children from the pain of our story.  Right now that pain looks like wanting more of what cannot be given.  She goes on to say:

"We want suffering to be like pregnancy - we have a season, and then it's over, and there is a tidy moral to the story.  I've come to sense that isn't what faith is at all.  What if there is never and end?  What if the story never improves and the tests continue to break our hears?  Is God still good?  How do you life realistically when you fell like your moments are fading, fleeting, too momentary?  How do you fight for normal in the midst of the crushing daily news of more hard?  How do you seek hope without forgetting reality?  How do we share the story being written for us with our children while we try to protect their childhood?"

Kara presents no answers to these questions, just allows the space to ask.  I don't know how to do this, but pray is that the God who meets me in this story also meets my young tender children in a way that is real and meaningful to them.  I pray that their childlike faiths can see through the hurt and hard to God, their steadfast companion, both today and 20 years from now.  That as they reflect on these years they know they were deeply loved and that they did not grieve our time apart alone.  The possibility of March is a long time, but love is longer.

Round 4

It has occurred to me that friends who read this are not really reading it to hear my various musings on this life, but to be up-to-date on how Jonah is doing.  To that end, here's an update only post......

It has taken me 3 rounds of chemo for this to really sink in, but as his counts are, so is Jonah.  What I mean is that when his counts are down, Jonah is down.  He generally doesn't feel good, he's more tired and less interested in therapy, he doesn't sleep as well.  At that point in the cycle, he's still battling nausea and vomiting.  Then, his counts recover, and Jonah is good.  He's laughing, joking, he's negotiating for therapy to be a little longer, he's eating and sleeping through the night.  He is the Jonah that we know and love.

Jonah's counts are good now.  We've had a good week of therapy at RIC.  Actually, last weekend he got his second day pass, so he joined the family for brunch and then checked out Ronald McDonald House (RMD).  There's a Coldwell Bankers sponsored "selfie" camera in the lobby of RMD and the kids couldn't resist getting a group photo. It was great to have him join us in part of our new "normal" routine.

Jonah is scheduled to go back to Lurie for round 4 of chemo on Monday.  Given the cycle length (7-10 days), we will likely celebrate Thanksgiving from Lurie.  Jonah's 5th birthday is then December 3.  Theoretically we should be back at RIC by then, but rarely do we follow the theoretical, so we're not sure.  Timing-wise, cycle 5 will likely compete with Christmas, so we're not exactly sure on that.  After cycle 5, it is likely we will return to RIC.  It depends on what kind of progress Jonah is making.  It's hard for RIC to commit to anything as they usually only get Jonah for 2 week blocks and his counts are low for one of those weeks.  Two weeks of therapy at a time isn't a lot from a therapists perspective.  We anticipate going back to Lurie for round 6 of chemo, the doozie that's followed by stem cell transplant, late January/February.  Cycle 6 is a 30 day hospitalization that will be different.  Jonah will not be allowed to leave his room most of the stay and visitors will be quite limited.  Again, we expect we'll need to go back to RIC after cycle 6, but this time we could stay at RIC as long as they require.  After cycle 6/rehab is complete, there is almost no scenario where we don't move onto radiation.  Honestly, things in this world change so fast - it's like trying to pin down glitter - that we're focused on cycle 4 and looking at cycle 5 and not looking too far beyond as we "do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own" (Matthew 6:34).

Here are ways you can pray through all of this for us:

* During cycle 3 none of the 5 anti-nausea medicines seemed to help.  We have taken a break from them all in hopes that they will be more effective in cycle 4.  Please pray that it is so as the constant nausea and vomiting are hard on Jonah's spirits.

* Prayer for our family holidays.  Thanksgiving, Jonah's birthday, Christmas and New Years are seeped in tradition that will be executed differently this year.  We pray that these events are still joy filled celebrations that we will be able to cherish and remember with a smile.

* As weird as it may be, prayer that we are able to execute this roughly outlined plan.  It seems weird to pray to be able to put a child through this, but it means that you still have your child and chance.  We know that no everyone is granted a cycle 6 or radiation as options.

* Of course, all the prayers for complete healing and for how we all relate to God through and despite these circumstances are appreciated.

Thank you all of your on-going caring and support!  We love you and how you love us!

Collection

Next time you see Jonah, he'll have a new accessory.  That's right, he's getting glasses!  Apparently he's got pretty bad vision in his right eye, which they suspect has been that way since birth.  It seems that although most of his friends collect things like Pokemon cards, matchbox cars and erasers, Jonah collects medical specialists.  With his diagnosis you would of course expect him to have a neuro-oncologist and neurosurgeon, which he has.  Because of the posterior fossa syndrome, he's got a rehab doctor.  As a result of the early complications he experienced, he's also got a team of PICU doctors and neuro critical care doctors who follow his progress.  Doctors in his collection who treat issues apparently unrelated to the tumor - ophthalmology (glasses), urology (kidney stone), GI (eosinophilic esophagitis) and an allergist (anaphylactic allergies).

Jonah has a lot of doctors.  It feels overwhelming to require so many people to help care for your child.  It feels a little unfair for a 4 year old to have 9 specialties that follow his medical progress.  I want to stop there, sit in that thought and wallow a bit, but it's not helpful and it doesn't change anything.

When Jonah was born, we were part of a Christian co-op preschool in Reading, MA.  One day, shortly after he was born, one of the moms that I hardly knew called me.  She said that although it didn't happen often, she occasionally received a message or vision from God to share.  She went on to tell me that Jonah was a very special baby and would accomplish great things.  It was an uncomfortable conversation for me, so I punted by saying something generic like, "All children are a gift from God and we're so thankful for our family".  I honestly don't remember exactly what I said, I was just trying to get off the phone.  The mom took my punt and redirected to again say that Jonah would do something special in this world before allowing me to end the conversation.

With our 9 specialties following Jonah now, I think back to that conversation and I wonder.  Was this what she meant?  Does Jonah hold the key to some special medical breakthrough? Will his story touch lives and challenge others to really know God?  Will his story challenge just me to really know God?

At a time when my questions come faster than answers, and I want to wallow, I again turn to music to speak the truth of God's sufficiently.  Even in this, God gives me the strength to breath.  I can't plan next week, but I can breath and take the next step and know that there is a still small voice to be heard if I can just trust enough to listen....

                                            "Need You Now (How Many Times)"
                                                                     (Artist: Plumb)

Well, everybody's got a story to tell
And everybody's got a wound to be healed
I want to believe there's beauty here
'Cause oh, I get so tired of holding on
I can't let go, I can't move on
I want to believe there's meaning here

How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.

Standing on a road I didn't plan
Wondering how I got to where I am
I'm trying to hear that still small voice
I'm trying to hear above the noise

How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.

Though I walk,
Though I walk through the shadows
And I, I am so afraid
Please stay, please stay right beside me
With every single step I take

How many times have you heard me cry out?
And how many times have you given me strength?

How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.

I need you now
Oh I need you
God, I need you now.
I need you now
I need you now

Happy Halloween

Apparently if Halloween is on Saturday, Chicago hospitals host their festivities on Friday.  This was not favorable for us, as Jonah moved from Lurie to RIC on Friday, so we missed the festivities at both locations.  This did not diminish our fun much though.  Here Jonah wears Anna's costume mask.

Saturday, the actual day of Halloween, Chris Kratt with cheetah power, Chase (Paw Patrol), a blonde Dr. Lulla and Elsa trick-or-treated around RIC.  Mummy may have had to walk ahead of them and pre-stock their trick-or-treat locations to make sure they weren't disappointed, but sometimes you gotta do what you gotta do.

Because it's too cute to not appreciate, at Julia's dance class they got to dress up and Julia pulled out an old costume that Jonah loves to wear.  Actually, he usually gets stuck in it because he's clearly too big for it.  In case you can't tell, I'd be talking about Tigger here.  Look at that sass, with her hands on her hips!