6 More Weeks of In-Patient

Auntie Liz is in town and it's delightful to have another adult to love on the kids.  Truthfully I think she's having a pretty good time with it too.  Being in patient at rehab doesn't mean you can't have visitors who read you stories and have fun.

 The other day Jonah came back from Lurie to find that someone had put a mask on his dog, Chase.  Being in patient at rehab doesn't mean you're above joking around.

Dan came to visit the other day and Jonah and he swapped iPads.  Being in patient at rehab doesn't mean you don't get to play on electronics doing "guy" stuff.

Cousin Anne came to visit and smell Jonah's stinky feet.  Being in patient at rehab doesn't mean you stop being a little boy who's into gross things.

Today we met with our oncology team to review Jonah's post stem cell MRI & LP and make a plan forward.  The team was very happy with the MRI & LP results and feel that there is significant improvement from the very beginning.  However, because of the extent of initial disease this summer, we have decided to move forward with radiation for Jonah next month.  We will be giving Jonah a lower dose of radiation than originally planned however, as a result of how well he has responded to his 6 rounds of chemo.  In the perfect dream world, the MRI would be 100% beyond a shadow of a doubt so perfectly clean and clear that we didn't have to do radiation, but a reduced dose because of good treatment results is a real world second.

Punxsutawney Phil is not always the most welcome of predictors, as he often predicts more winter.  Even when he has the good sense to not see his shadow, indicating spring, we look at him sideways, because how can a groundhog predict the weather?  I digress, but the reason I mention Phil, is because although we received favorable test results and reduced dosing, the team recommended that we continue Jonah's in patient stay at rehab during radiation.

The whole radiation experience is meant to be 5 days a week for 6 weeks.  During those 6 weeks, each day at the proton radiation center (to be referred to either as the proton center or Procure moving forward), which is about an hour from our house, Jonah will spend at least 3-4 hours being put to sleep, positioned & prepped, radiated and then recover from anesthesia.  A common radiation side effect is fatigue.  Because they have Jonah's best interest at heart, the team speculates that the travel and radiation on top of 3 hours of back-to-back out patient rehab therapy 3 days a week will be too much for him.  Being in patient during radiation would mean changing rehab hospitals to Marion Joy, which is just a few miles from the proton center, but would allow for greater flexibility with therapy scheduling.

This extra in patient stint was a bit more unexpected than anything they had to say about the radiation itself, but unfortunately there is much logic to it - and so we prepare for 6 more weeks of in patient rehab, just like we prepare for 6 more weeks of winter when Phil sees his shadow.  Just like we know though, that winter will end, we know that our time in patient will end too, so we're going to figuratively bundle up our coats, make a little hot chocolate and build a snowman.

Stop Predicting, Start Living

Sometimes, you need someone to give you swift kick in the pants to help recenter how you think.  Sometimes that swift kick can be delivered with such grace and gentleness that it doesn't hurt, but does make you open your eyes.  After a few recent angst-filled posts, I received an email from a friend that has served as that gentle, grace-filled kick.  This particular friend has a son, now in Noah's 3rd grade class, who had a rocky and tenuous beginning.  Although the sources of our angst are different, she has understood much of my angst and shared these thoughts with me:

"My sister and I were chatting one day and I was planning his future. I was convinced that he would never be in a normal classroom, never go to college and never fall in love(I know that's strange to think, but it was so very important to me.). My sister asked me to stop predicting and start living. She wanted me to fight hard and do whatever I could to give him the best life possible. She wanted me to stop worrying and just to hope. My sister was(is) very wise."

Her words, or perhaps the words of her sister, immediately got under my skin. Stop predicting and start living. As a type A planner, it's in my nature to predict and plan for all possible outcomes. It is honest, to worry and wonder about Jonah's future, but letting that be all I do, robs us of the life of today. Matthew 6:34 says, "Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own". Tomorrow will come tomorrow and worrying and predicting how it will go will not make it come sooner. It will keep me from living in the gift of today though.

And so, as I sit here, waiting for the MRI & LP to be complete, I am again reminded that I want to live in these moments, holding onto hope. We will fight hard, and do whatever we can to give Jonah the best life possible, but we are going to live.

Now that he's at RIC, Jonah's weekend visits home are a bit more regular.  This weekend he gave his old plasma car a try.  He needed a little more help than before, but the joy was uncontainable.  Jonah clearly understands how to live.

On a beautiful sunny spring day, who doesn't love chalk art?  Even more, who doesn't love chalk art that gets to welcome our favorite hospital resident home for the day?

God has gift children with the gift to live and not be wrapped up in the scary.  Jonah's best friend came to visit him at RIC again this weekend.  The boys are never put off by their differences, the hospital setting or how their time together has become more creative.  This picture captures another aspect of living - walking together in the circumstances, meeting each other where they're at.
  

The boys.  So much of the living of this season is illustrated being side-by-side.

Where Are We Now?

Simon recently took the girls to a daddy/daughter dance.  They were over the moon excited and had a fantastic time together.  The girls ensembles were selected by Anna without any prompting.  If you know Anna, you know it's a big deal that she picked out a dress and then a bigger deal that she went on to pick a necklace and bracelet.  I'm not sure we'll convince her to wear any of it again, but she did a nice job on their outfits.

Noah recently did a presentation to the third grade classes at his school about cancer and Jonah.  We haven't done a lot of "pushing in" to the classrooms, but, Noah was starting to have some uncomfortable conversations with classmates about Jonah's disease in which classmates clearly were misinformed.  Noah was really excited to be able to present and did a great job both educating his peers as well as giving them a glimpse of what our life is like right now.

Now that Jonah is back at RIC, we hope to take advantage of more day passes.  We're off to a good start - his first weekend at RIC involved him being home most of Saturday.  Anna,the ever doting sister, was especially delighted to have him home.

Something must be in the RIC water.  As soon as we returned, we found out that 3 people we regularly chatted with were leaving.  First we learned that one of our first nurses on the floor "B" was leaving.  Then we found out the dietician was leaving.  Then we found out that Mrs. T was leaving too!  Mrs. T often would help transport Jonah between RIC & Lurie for appointments.  She is also the one who surprised him with "Lovie" (giant dog pillow pet) at Christmas after their conversation about Jonah wanting a big dog but not being able to have one.  These smiling faces will be missed!


We've made it to RIC and are nicely settled in.  Jonah is doing good work at therapy and impressing everyone by how little backslide he had while away for stem cell transplant.  Watching him work in therapy continues to give us hope for the things he may be able to do in the future.

In terms of things coming up, outside of focusing on therapy, Jonah has another progression MRI & LP on Monday (3/14).  These tests will tell us how effective the conditioning chemo associated with the stem cell rescue was in further reducing the disease load.  Going into stem cell, there were a few spots that were clearly tumors still and although they were reduced in size from diagnosis, they were still there.  We covet your prayers in the results of these tests and for our wisdom to know where to go next.  We will be having a meeting on Wednesday (3/16) with our oncology team and the radiation oncologist to determine if radiation is the right next step.

Throughout Jonah's treatment, radiation has scared me the most.  Although the medical community cannot quantify the effect, they are certain that radiation under the age of 8 (10 depending on where you look) will result in a loss of IQ points to the extent that future independent living may become difficult. That is of course in addition to the short term effects of short term memory issues, possible mouth sores (again), skin discoloration, skin burns and overwhelming fatigue just to name a few.  I don't want to do radiation.  I want to be done with treatment.  I feel like we've put Jonah through so much already, I want to be done.  The team wants to be done too.  We don't want to do radiation.  The thing is, radiation is our best chance of remission.  Medulloblastoma is most responsive to radiation.  With that fact firmly established, how can we not do radiation?  How can we risk a recurrence that may rob us of our chance to try?  Radiation isn't a guarantee that the cancer won't be back, but if that does happen, we will know that we tried everything.

I've been stalling on this update, hoping to have a nice bow to tie everything up in, but I can't get there.  Instead I find that my prayers are mostly "Please God."  Please protect Jonah's body from the long term side effects of treatment.  Please put Jonah into remission forever.  Please give us wisdom to navigate this.  Please let Jonah continue to make therapeutic gains.  Please let Jonah walk again as his primary mode of transportation.  Please let Jonah be able to go to school in the fall and have it not be too hard.  Please let us take Jonah on vacation again.  Please let us bring Jonah home and find a new normal.  Please help us to not always be afraid - help us to not look at every headache, stomach problem, every ache and pain in our children as something more than it is.  Please use Jonah's story to bring your Light into the world, to bring people to consider knowing you - but please don't let that impact cost us Jonah's walk on earth.  Please God, please God,  please God.

And again, when I cannot find the words, there is a song - a song that speaks to my heart today - that allows me space to process when I can't find the words.  Right now I have 2 songs (lyrics to both are below).  I either play them repeatedly, soaking in the words, crying, grappling with our circumstances and working out with God how to step forward - or I take a break from feeling and listen to Taylor Swift.

The first song is Casting Crowns' "Just Be Held".  Casting Crowns also is responsible for "Praise You in This Storm", which is another song that often plays in my processing loop.  "Praise You in This Storm" was written after the lead singer watched a family lose their daughter to cancer.  Their walk through their storm inspired the song.  "Just Be Held" is the God's response to those walking through a storm.  The first words of the song feel like a pronouncement of truth - " Hold it all together, everybody needs you strong.  But life hits you out of nowhere, and barely leaves you holding on."  Even after all this time, I'm sometimes startled that this Jonah's cancer is real and I have no idea how we've held on this long.  Then, in the chorus, there is a line that fills me with questions, "Your world's not falling apart, it's falling into place."  Really?  Not falling apart but into place?  Right, this totally seems like a good plan.  And then right on its heels, "If your eyes are on the storm, you'll wonder if I love you still, but if your eyes are on the cross, you'll know I always have and I always will."  Oh yeah.  God loved me so much, Jonah so much, that He sent His son to die on the cross for us.  That kind of love will "paint beauty with the ashes".

The second song is Danny Gokey's "Tell Your Heart to Beat Again".  This song also has it's origins in the medical world.  A pastor was observing a heart surgery, and after the heart was repaired the medical team made their attempts to restart the heart without success.  The surgeon then knelt by the patient's head and told her, "We have repaired your heart, if you can hear me, you need to tell it to start beating again" and with that, her heart started beating.  This song also lays my heart out from the beginning, "You're shattered, like you've never been before.  The life you knew, in a thousand pieces on the floor, and words fall short in times like these - when this world drives you to your knees - you think you're never gonna get back to the you that used to be".  Shattered?  Yes.  The life we knew before?  Certainly in a thousand pieces, never to be the same again.  Get back to the you I used to be?  Doubtful - I am forever changed and I don't really know what that means right now.  "Let every heartbreak, and every scar be a picture that reminds you Who has carried you this far, 'cause love sees farther than you ever could - In this moment heaven's working everything for your good". Again, the love of Christ working through every heartbreak, every scar - it's not too hard, too scary, too sad, too overwhelming for love.  "Cause your story's far from over - and your journey's just begun".  Life is not a destination, but a journey, and as long as we have breath to breath we have life to live no matter the circumstances.

These words - these songs, don't tie everything up in a pretty bow either, but they give me a framework to hang my heart on.  A place to lay my fears, confusion, anger, sadness and hope out to examine with God so that I can find my way through.  And it is with that that I leave you.  A lot of unresolved emotions swirling in the face of more test results and hard decisions.  It may not be pretty, but it is honest.  And in that honesty, I fully trust that God will meet us again and again, guiding our path, preparing our hearts for tomorrow.  It won't be easy, I think that much is clear, but we won't be alone.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"Just Be Held"

                                                                   Hold it all together

Everybody needs you strong
But life hits you out of nowhere
And barely leaves you holding on

And when you're tired of fighting
Chained by your control
There's freedom in surrender
Lay it down and let it go

So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your world's not falling apart, it's falling into place
I'm on the throne, stop holding on and just be held
Just be held, just be held

If your eyes are on the storm
You'll wonder if I love you still
But if your eyes are on the cross
You'll know I always have and I always will

And not a tear is wasted
In time, you'll understand
I'm painting beauty with the ashes
Your life is in My hands

So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your worlds not falling apart, its falling into place
I'm on the throne, stop holding on and just be held
Just be held, just be held

Lift your hands, lift your eyes
In the storm is where you'll find Me
And where you are, I'll hold your heart
I'll hold your heart
Come to Me, find your rest
In the arms of the God who won't let go

So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your worlds not falling apart, its falling into place
I'm on the throne, stop holding on and just be held (stop holding on and just be held)
Just be held, just be held, just be held, just be held

"Tell Your Heart to Beat Again"

You're shattered
Like you've never been before
The life you knew
In a thousand pieces on the floor
And words fall short in times like these
When this world drives you to your knees
You think you're never gonna get back
To the you that used to be

Tell your heart to beat again
Close your eyes and breathe it in
Let the shadows fall away
Step into the light of grace
Yesterday's a closing door
You don't live there anymore
Say goodbye to where you've been
And tell your heart to beat again

Beginning
Just let that word wash over you
It's alright now
Love's healing hands have pulled you through
So get back up, take step one
Leave the darkness, feel the sun
Cause your story's far from over
And your journey's just begun

Tell your heart to beat again
Close your eyes and breathe it in
Let the shadows fall away
Step into the light of grace
Yesterday's a closing door
You don't live there anymore
Say goodbye to where you've been
And tell your heart to beat again

Let every heartbreak
And every scar
Be a picture that reminds you
Who has carried you this far
'Cause love sees farther than you ever could
In this moment heaven's working
Everything for your good

Tell your heart to beat again
Close your eyes and breathe it in
Let the shadows fall away
Step into the light of grace
Yesterday's a closing door
You don't live there anymore
Say goodbye to where you've been
And tell your heart to beat again
Your heart to beat again
Beat again

Oh, so tell your heart to beat again

We Heart 17N

Sometimes to realize how far you've come, you have to remember where you started.  This is Jonah in August 2015, after all of his surgeries and 2 weeks in the PICU.  He'd just recently come off of the ventilator, was about 17 kg (37 lbs) and couldn't do anything other than the very basics of breathing, digesting and eliminating.  This was before he was squeezing fingers on purpose, giving thumbs up, sitting, standing, walking, smiling, laughing or talking.    

This is Jonah today.  Jonah is in a total different place now on his road to recovery.  He is eating, laughing, talking, sitting, joking and playing again all on his own.  With a little support, he is standing and walking short distances.  He is now 24 kg (52 lbs) and a very different kid than when he first got to 17N.

As our time on 17N at Lurie starts to wrap up (hopefully forever), I find one of the surest ways to deal with my fears of the future is to be grateful for the past.  To that end, I want to thank everyone on 17N who has walked these last 7 months with us.  I know that often your job is hard, both physically and mentally - that you see things that you can't help but take home in your mind that disturb your sleep.  I know that the hours are long and that you give with your whole heart to patients and families, trying to shield us from hospital bureaucracy to ensure we have the best experience possible.

To the nurses: You deserve our most heartfelt thank you of all.  We had the privilege of getting to know so many of you through our 10+ stays.  You helped hold the puke bowl, changed giant blow out diapers, brought endless supplies, administered medication upon medication.  You adapted to our rotating caretaker schedule and would stand beside us as we negotiated with Jonah to take a medication, or you'd be the heavy telling him that he had to put the leads on.  You were stealth ninjas at night trying to let a weary parent get a few hours of shut eye.  You made a point to "know" Cowie. You counseled us on the some of the "normals" of treatment, educated us on basic central line care.  You changed dressings and negotiated baths.  You encouraged Jonah when he'd get out of bed, and you'd encourage us when he wouldn't.  On Jonah's birthday, you sang to him in the wee hours of the morning to be sure you'd be the first to show that a birthday in the hospital could still be special. You turned a blind eye when mom couldn't fight back the tears, were filled with grace and compassion when Jonah was mad at the world and directing it at you.  You cheered on our date nights and family time.  You answered at least a million questions that we had.  You hung out in our room if it smelled like creamed corn or essential oils. You walked along side the terrible hard of the conditioning chemo and stem cell transplant and celebrated Jonah's recovery.  You saw our little boy not as a body in a bed, but as a little boy who should be outside running and playing. Thank you Kristen, Melissa, Megan, Grace, Annie, Rose, Courtney(s), Steve, Katie, Rebecca, Andrew, Jen, Hailey, Jenny, Gina, Sam(s), Kristin(s), Chris, Sarah, Nikki, Lauren, Bryan, Anna, Amanda, Kimmie, Kathryn, Brittany, Merissa, Tim, Tory, Yael, Ashley, Ashlee, Ryann, Tara, Molly, Megan, Kelsey, Jenna, Kim, Erin, Julie, Purvi, Kelly, Jennifer, Jane, Nicole, Kathrine and Robyn.

To the CNAs:  As perhaps comes with the territory, you stood in the gap and helped get the dirty work done.  You also helped with puke bowls and diapers and changed a thousand chucks.  You changed sheets, brought supplies and negotiated baths.  You took vitals and allowed Jonah to dictate the arm that would be used and how much he was going to "help".  You were endlessly patient with our other children when they felt that they should be part of the vitals process.  Thank you Katie, Tracy, Danjiella, Ronnie, Maggie, Vicky and Meghan.

To the various therapists:  You are the purveyors of hope and distraction.  You remind patients and families what can be and help take steps to make that a reality.  You take a lot of abuse as you push patients to places they don't want to go.  You are creative and persistent but filled with grace and patience.  You distract from the pain and frustration of being in the hospital.  You normalize the inconsistent pattern of being in the hospital.  You advise us on ways to sneak calories into our boy.  Thank you Angie, Melissa, Jennifer, Chris, Elyse, Laura, Jeanette, Ann-Marie, Leslie, Hannah, Kelly, Kathleen, Kate, Lorie and Stacy.

The the APNs, residents, fellows and attendings:  You keep terrible hours and are required to know a lot about cancer and everything that comes with it.  You knew when to treat and when to wait.  You listened to parents that knew just enough to be dangerous and humored the endless questions and concerns.  You saw our son, not as a little kid, but as someone worthy of your best conversation. You held mom's hand when medications didn't behave like we expected (here's looking at you hycet, Dr. Reichek and Kate).  Thank you to too many to name.

To the stem cell team: You tried to prepare us for the terrible of terribles that we would walk during stem cell transplant.  You closely monitored AST, ALT, bilirubin, creatinine and BUN levels.  You paid close attention to the fever curve that wouldn't break and the mouth sores as they crept in.  You reminded us that as terrible as things got, it was all normal.  Thank you Molly, Ellen, Dr. Duerst, Dr. Chaudhury, Dr. Schneiderman and Dr. Tse.

To the leadership team: You checked in with great regularity to make sure that our stay was everything it could be.  You ensured that our room was clean, our meals were fresh and there were no problems with nursing.  You campaigned for better baby wipes and are working on better tissues now.  Thank you Barb, Deb, your Environmental Services and Dining Services counterparts.

To the support services:  You held our hands from the overwhelming beginning to now, every step of the way.  You helped give us words for how to talk to our kids about what was going on.  You convinced us to give Ronald McDonald House a try.  You got us out of our vacation and gym membership.  You recommended hairstylists and nail salons.  You talked philosophically about cancer and treatment and about life outside of the hospital.  You told us about the crepe place at farmers market.  You negotiated with insurance to get us back to RIC, over and over and over.  Thank you Gina, Lori, Rich, Heidi, Lisa and Ashley-Anne.

To hospital support services: You made sure that day to day our room was clean.  You offered words of encouragement and hope into our situation.  You were a friendly voice on the phone offering a digital smile. You brought coffee.  You let us onto the floor at odd hours and let us borrow you scissors for weeks at a time. Thank you Camila, Tiffany, Maria, Portia, Barbara, Christine, Carolyn and Denise.

To the playroom volunteers: You gave of your free time to come and play with sick kids.  You tried to figure out the various gaming systems to play with Jonah.  You colored pictures to decorate Jonah's room.  You came to visit and bring toys from the playroom to him.  You provided a bright spot in a lot of boring hospital stays.  Thank you playroom volunteers.

There are a few other people that should be included in this thank you.  People who are not part of our experience on 17N but have left forever marks as well.  From our very early PICU days - Dr. Press and Dr. Press, Dr. Jill and nurse Jennie.  From our neurosurg days - Wendy, Dr. Tomita and team and especially Dr. Volk who regularly visited Jonah throughout all of his stays.

I have no doubt I have left names off of this list, and I apologize.  Please know that if our paths crossed, we are grateful for your service.  We have walked the hardest journey of our lives these past months and time and time again we were treated with kindness, compassion, dignity and respect.  In all of our time, we never had a negative encounter, and that says a lot about the caliber of people at Lurie.

I wish we'd met all of you under different circumstances, but you have left a forever mark on our family.  "Thank you" rings hollow as a way to express our deep gratitude for everything that you have done for and poured out for our son and our family over these past few months.  Everyone talks about the need for a strong community to get you through exceedingly challenging experiences, and we have been abundantly blessed with a strong community.  I think equally important, and less recognized, is having a great hospital community.  Without your love and support, we would not have been able to manage this diagnosis.  Thank you.

Love - The Goodalls

Last of Lurie

So, in rounds this week, the team decided that if Jonah keeps on his path of recovery, he'll be ready to discharge to RIC early next week.  This discharge should be our last if things go according to plan.  There is no more chemo, no more procedures, no more reason to sleep at Lurie.  The end of a chapter that seemed a million miles away at the start of this journey.

Someone told me we should make a dream board - all the things we dream of doing as a family now that we can leave Lurie in the rearview mirror.  Put a big "X" on a picture of the hospital, close the book on this portion.

The thing is - I can't.  The facts of this journey have broken me.  I can't put a big "X" on the hospital because there's a chance we'll be back.  I can't let myself dream of all of the vacations we may take, I can't imagine having all of the kids at the same school - medulloblastoma is a mean and nasty cancer that likes to return, and if I "X" off the hospital and we have to return I won't be able to dig deep enough.

I hate being scared.  We haven't even made a decision about radiation, much less trodden that road, but closing the chapter on Lurie opens up all things scary.  Radiation scares me - the short term effects can be similar to the effects of chemo, and the long term effects can literally take away IQ points.  Then there's everything beyond radiation.  What will life be like when we bring Jonah home?  Is our house ready for his new physical requirements?  What will we do for school for Jonah next year?  Will he be able to eat enough to not require a G-tube?  And above everything, what if it comes back?  What if it's a secondary cancer instead?  What if we have to do this all over again?  What if it comes back?

Cancer breaks you - in ways that you don't understand until it touches you.  I will forever be scared, unless I don't need to be.  I hope to need to be scared, I hope to need to find answers to questions I would have never asked before cancer.  I know and trust that God is sovereign and that He is in the writing of Jonah's story, of my story, but that doesn't eradicate this fear.

Today is a good day though, and in that, I try and remember that each day is precious - each day a gift.  Jonah is recovering quickly from the expected terrible of stem cell transplant and the conditioning chemo and that is a gift.  His tomorrow is no more guaranteed than mine.  It's silly to feel like his tomorrow is more uncertain than mine - his story is written for a certain number of days, and worrying about all the troubles of tomorrow won't change that number, it just makes my days harder.  And so, as one chapter of Jonah's treatment draws to a close, the only way to move forward is still one step at a time.  I have to remind myself, opening a new chapter and the fears associated with it, doesn't change how to move forward.  One step - covered in prayer - at a time.

Stem Cell Transplant

This is what living in stem cell transplant looks like.................

Pump upon pump, which are often all running at the same time, delivering various medicines that he needs to get through this portion of treatment as well as constant monitoring of his respiration, oxygen saturation and heart.

Skin scratched raw from a body rash due to chemo that makes sleeping difficult, as the itch is so bad.  (There are spots that look much worse than this, but I can't bear to look at them and don't want to make anyone else do so either)

A "sucker" that helps pull the thick mucusy secretions from Jonah's mouth.  The secretions are from the mouth sores, and if he swallows them, they make him throw up.

We're in the thick of it right now - the expected terrible - that comes with stem cell transplant and the conditioning chemo that came before.  There are a lot of really hard parts right now, but they're all expected - we're living the expected terrible, which is better than venturing into the unexpected terrible, but it's still very hard.  What are the "expected terribles" that we're living through?

* A tip to toe body rash, likely caused by the chemo that had required bathing every 6 hours.  Jonah has such sensitive skin, that in the end, that wasn't enough.  He has been so itchy that he is scratching himself raw everywhere he can reach.  We've actually had the wound care team come consult on a few areas to ensure they don't get infected.  There's not a ton that can be done for the itch either, outside of IV Benadryl every 6 hours (which doesn't really help much) and lotion, so we struggle through to try and keep him comfortable.

* Mouth sores like never before.  We actually can't assess how bad his mouth sores are as he can barely open his mouth.  You can see the sores presence though, as Jonah's face and lips are visibly swollen and his lips yellow and bloody.  As a protective mechanism, the body produces extra mucus to try and help the sores, so there's endless thick mucus secretion pooling out of Jonah's mouth and making his occasional efforts at communication frustrating to him as he's hard to understand.  The pain from the sores requires a morphine drip with an intermittent push button to help cover the pain.  Finding the right pain med and dosage has been a challenge as a common side effect of pain meds is itching, so we've had to work to find the right combination to dull the pain but not make him more itchy.

* A week of fevers.  Jonah has had no ANC (Absolute Neutrophil Count - a measure of your immune system's ability to do its job), so his fevers could be for a thousand reasons.  Luckily, all of the blood and stool cultures keep coming back negative - and that's were the nastiest of nasties show up - but he's requiring IV Tylenol every 4 hours to keep his temperature under control and is on 3 antibiotics to be safe.  He did test positive for a bladder infection called BK Virus, (which makes blood tinged urination painful) but we are unable to treat it right now as there is an oral medication that is required and with his mouth sores he can't take anything by mouth right now.

As you can imagine, Jonah has periods of time where he feels beyond terrible - he'll have a fever, be super itchy, have a painful mouth filled with gross spit/mucus that is making him mildly nauseous  and as caregivers, we're asking him to do things - mouthwash, baths, getting out of bed, etc - and he hates it.  He's like the cool clique at school, and who's "in" and "out" changes minute to minute.  Sometimes we're "not allowed to talk to him" because he's "not listening".  Sometimes the nurse "isn't allowed to take his temperature, only mummy is", sometimes "mummy has to go away" because I'm "mean".  Seeing him so miserable is heartbreaking - we'd give anything to make him feel better.  Sometimes it's exhausting - after 20 minutes of angry tear-filled negotiations on Jonah's part over an ultrasound at 10:30pm or vitals at 3:00am.

Today however, there are small glimmers of recovery.  Today's lab results indicate a very small ANC and Jonah has been interested in listening to a few stories and even wanted to play with a toy for 5 minutes today.  He still requires all his pain meds, the Benadryl, the Tylenol, the 3 antibiotics and the sucker.  He's still hard to understand as he talks through the mucus and he's still fairly grumpy - but there are small signs that we may be nearing the end of this portion of the hard.  The doctor said yesterday that we're almost out of the minefield, but we're still in the minefield.

As we navigate these final steps out of the minefield, we pray for each other as caregivers - as these days are long.  We pray for Noah, Anna & Juila, who are not allowed to see their brother and don't understand why he's too sick to at least FaceTime.  Mostly though, we pray for Jonah's health, both in the recovery from the transplant, but also that this high dose chemo kicked the cancers pants.  

PSA

 My kids accomplish things they are proud of.

 My kids accessorize.

My kids perform.

My kids celebrate their heritage.

My kids put up with poorly practiced buns when they forget to mention their 100th day of school celebration until the morning of said celebration.

My kids begrudgingly pose for pictures.

My kids apply too much chapstick in a "I can do it myself" spirit.

Friends, I just wanted to make a quick Public Service Announcement - you don't have to compare to share.  What I mean, is that although we experience different hardships and joys - mine don't trump yours.  Ok, sometimes they will, but that's expected in the normal give and take of friendship.  Roman 12:15 says, "Rejoice with those who rejoice; mourn with those who mourn".  Please don't hesitate to share the challenges you're facing because "they're nothing like yours".  I get it, we've got a lot of hard in our story, but that doesn't diminish the hard that you face in your story.   Sick parents, challenges with children, job frustrations, housing challenges, personal illness, trouble on the home front, interpersonal conflict, finding your niche, balancing the stresses of everyday life - your struggle may be different than mine, but that doesn't make it less real.  Equally, don't feel badly sharing your joys - a new job, a fantastic vacation, an opportunity to grow your gifts and talents.  Again, your joys look different than mine, but they are joyful.  

There are few things that I can do in this season, but being a friend is one of them.  Because of everything we have going on (and my inherently bad memory), I may forget the date of the big deadline or doctors appointment, but I am praying for you and thinking about you.  Please know that I'm not comparing our stories and neither should you.  I love being able to walk along your journey with you - rejoicing and mourning with you as you rejoice and mourn with me.