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.

Stem Cell Transplant

This is what stem cells look like.  They are packaged with red blood cells during processing.  The red blood cells lyse when they are put in the deep freeze causing an raspberry shade of red.  The cells are thawed in a warm water bath and then gravity feed into the line.

Today was the big day - Jonah had his stem cell transplant.  For us, this transplant is a little anti-climatic.  For kids with leukemia or sickle cell or something like that, the stem cell transfusion is often their "cure".  For us, the stem cell transplant just allowed them to give Jonah crazy high doses of chemo as part of his treatment.  The doses were so high that his blood counts wouldn't recover fast enough (or maybe at all) to be safe without the stem cell rescue.  Although today marks continued forward progress in his treatment, today was kind of just another day.

I did want to take a minute to clear up some misconceptions about what comes with Jonah's stem cell transplant as well as share a few things I've learned though.

* The preservative in the stem cells smells terrible.  It's compared to creamed corn, which isn't far off.  The smell started almost immediately and we expect Jonah to keep excreting it for the next 48 hours. Who knew stem cell transplants smelled so bad?

* Jonah is now in protective isolation.  That doesn't mean he can't have visitors or that visitors have to wear biohazard suits.  It does mean that no children may visit and only healthy adults.  It does mean that Jonah isn't allowed to leave his room for the next couple of weeks until the stem cells engraft and start to do their thing.

* Jonah is on a low-bacteria diet.  Jonah's already not really eating, so this doesn't mean much of anything right now, but eventually it means only fruits & veggies that can be peeled, no leftovers or sandwich meats and no restaurant food for 100 days.  It does allow for plenty of chocolate though, so he should be fine.

* Mouth sores are likely to be Jonah's biggest nemesis.  They're already starting to show up in small ways, but they are expected to get worse - much worse - like need regular doses of morphine to help with the pain worse.  "Mouth sores" is a misnomer also, as they will likely show up throughout his GI track - top to bottom.

* Initially Jonah's kidney and liver function were quiet elevated (his liver function was at one point 500x normal), which can be normal with the chemo.  They are trending downward which is a good sign.  They need to continue downward though to get back to "normal"  Although the liver numbers are more elevated, it is the kidney impact that could have more lasting implications if it doesn't keep dropping.  Even though we've been seeing a downward trend with both numbers, either can stall out or begin climbing again.  It seems that kidney issues, liver issues and mouth sore issues are 3 of the big reasons stem cell kids end up in the PICU.  We don't want to get back to the PICU.

* Despite bathing every 6 hours for 4 days, one of the chemo has managed to give Jonah an itchy body rash.  He looks like he spent a bit too much time at the beach in his birthday suit and is a uniform pinky color.  More baths, lots of lotion and some antihistamine are taking the edge off a little, but he's pretty itchy.

* Finally, in preparation for this isolation, many of you generously poured out in the name of busy boxes.  It was really overwhelming - well beyond what our house looks like at Christmas.  Thank you all so very much for helping to brighten this time and try and keep Jonah entertained.  At the beginning, I thought I'd be able to jot everyone a note of thanks, but now realize there are too many to thank individually.  Please accept our deepest gratitude (electronically and generically) for your outrageous generosity.

Our prayers now are for a textbook journey through the rest of this stem cell process.  We hope that Jonah will "surface" again sometime the end of February, but we really just have to wait and see how quickly these cells make themselves at home and start growing up to be the cells that Jonah needs.

Amazing...

5 years old.  A years worth of chemo over 6 days.  Will kill him without stem cell transplant.  Excretes through skin and is so toxic that he needs to be bathed every 6 hours.  Woken up in the middle of the night for a bath and traumatic dressing change.  Totally justified at being upset - cries and says no.  Says he doesn't like me.  We have bath.  Change dressing.  Unprompted - "Daddy, I'm sorry for being mean to you.  I love you". Daddy is a wreck.  This kid amazes me.  He's my goofy hero.  

Jonah selfie the night before admission at Capital Grill where he likes to go for soup, steak and mac n cheese. 

And So It Begins

In case you've ever wondered what chemo looks like - here it is.  So inconspicuous in a setting full of IV fluids, and so toxic that even a small bag is labeled "high alert".

So begins maintenance therapy.  We don't expect Jonah will make rehabilitative strides during this period, but we're working hard to maintain.  Note the calendar in the background to help us all keep track of the days, above it is a daily "to do" list so that even on the crumbiest of days we don't forget to brush teeth and get clean sheets.

In stem cell lingo, today is day negative 5.  You count down until transplant day (day 0, 2/9) and then up from there.  As far as I'm concerned, today is day 4.  Four days into this new part of the journey.  It's funny how familiarity breeds comfort, how scary and hard things seem comforting in the face of something unknown.  The first 5 cycles of chemo were no cakewalk, but we roughly knew what to expect and there was weird comfort in that.  Now, we are 4 days into journeys unknown.  Jonah will never go back to his previous chemo protocol, ever.  Either things are successful and it's irrelevant, or he relapses and it's ineffective.  We're now learning new chemo drugs, new doses (one drug is repeat from the previous cycles, but is 4 times the original dose), facing the unknown of how the stem cell transplant will impact his body, we're looking at radiation - all of the sudden, the first 5 cycles, scary as they were seem comfortable.

If you think of life as a story, we are turning a page, and as we do, I suddenly find myself continuously bumping up against 2 verses everywhere I go: 2 Corinthians 4:16-18

Therefore we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

And Lamentations 3:22-24

Because of the Lord's great love we are not consumed, for his compassions never fail.  They are new every morning; great is your faithfulness.  I say to myself, "The Lord is my portion; therefore I will wait for him."

Cancer doesn't feel like a light and momentary trouble, and yet we are not consumed.  Yesterday in my devotional reading it said, "I will get you safely through this day and all your days.  But you can find Me only in the present.  Each day is a precious gift from My Father.  How ridiculous to grasp for future gifts when today's is set before you!"

It's easy to want to "read ahead" to borrow great worry from tomorrow about how the coming weeks will go and about radiation and about what comes after that - but today is a gift.  Today maybe filled with light and momentary challenges that threaten to take our eyes off the unseen, but God is compassionate and faithful, and today is a gift.  To love more, to laugh more, to be a light in a dark world in a dark place - because of God's great love we move forward into today, grateful for the gift.  We will learn the ups and downs of this next journey and even in the hard of it all, we will be grateful for the gift of today.

Cancer Parenting

While at RIC, Jonah loves weekly dog therapy.  He also loves his new walker that allows him even more freedom than his wheelchair.  Here Jonah is with his walker, a dog and a good friend from the floor.

Noah & Anna are early risers, so much so that they have time to play Headbands some mornings before school!  Anna is quite baffled as to "who" she may be.

Princess Julia, stepping outside her castle tent with her bitty baby, in matching clothes, to acknowledge her fans.

Having 4 kids is a delightful, crazy, taxing, rewarding and wonderful circus.  We love having 4 kids, but it is hard work.  Lots of people think that we're crazy ourselves to have 4 kids, but I think that they just don't understand the deep joy that comes with the crazy.  And then 1 of your 4 gets sick - really sick - like hospitalized for over 6 months sick, and the parenting task that was already hard moves to a whole different level.

In the beginning, it was easy to focus on Jonah, knowing with confidence that our community had the other 3 kids well loved and cared for.  It was a great adventure for them and although they would have preferred life to be normal, they went along for the ride.  Overtime, we've been able to shift to a weird hybrid parenting thing, seeing the kids as much as possible, but still being beside Jonah.  All those teachable moments that normally just spontaneously happen are now packed into 2-3 days instead of evenly spread out.

The truth for Noah, Anna & Julia is that part of each of their stories will always be having a very sick brother and a weird parenting season through it.  We will never know how they would have been had this not happened, that's not part of their story, or ours.  The complication of this is, it is hard to tell what behaviors are "normal" for their age - things that even without a sick brother would happen - and what behaviors are in response to our situation.  Added to that complication is that, as parents, we have 2-3 days a week to "parent".  Most of our parenting has become reactive and not proactive and it's hard to not be the parents we want to be to all of our kids.

I continue to be amazed at the ways cancer disrupts life.  Sure, at the beginning the team talks prognosis, treatment and community resources - but no one warns you of the myriad of other ways things will change.  I was talking to someone on staff about this a few weeks ago and she conceded the point saying that it would be too overwhelming for them to lay out all the ways cancer changes everything, so they don't tell us.

I share this now, so that 15-20 years from now, when our kids are in counseling, they know that we're trying our very best right now.  There is no book written, "How To Be The Best Parent You Can While Also Having A Child In The Hospital", otherwise I swear we'd have read it.  I also share to ask those who encounter our kids to continue to have an extra measure of grace (which looks both gentle and firm towards them as appropriate) for them.  I was recently reminded by a friend that it truly does take a village to raise children and that God's grace is sufficient for them and me even now.  I am grateful for that truth, that God can and does work within the hearts and minds of my children without me scripting each experience and that even if these years don't look like I want them to, they look like God has designed them to look.