It's Just Hair

We're really in the thick of things now.  There are so many things that you expect going into chemo, but when they actually come, they're harder to deal with.  We've had mouth sores, vomiting and nausea, neutropenic fevers leading to septic shock - and now we've got hair loss.  It's so cliche - it's probably the #1 side effect people think about when they think of chemo.  The thing is, it's not cliche when you lift your little boy up and his pillow is covered in hair.  It's not cliche when you're wiping hair strands out of his eyes.  It's not cliche anymore, it's hard.

We made the decision tonight to shave Jonah's head.  As hard as it was, it was just as hard to see the hair falling out, so at least this way it's all over with at once.  Now there is no doubt though, Jonah is a cancer patient.  His surgical scars have no protection from view, his shunt is a visible lump on his head.  I get that it's just hair and that it will grow back once he's done with chemo.  I think what makes it hard is that right now we're waiting for the Jonah we know to recover from the posterior fossa syndrome, to start talking to us again, laughing with us again, playing games with us again.  Right now he doesn't act like the Jonah we know and now he doesn't look like the Jonah we know either.

Perhaps it's God's timing - on the day that Jonah losses his hair, we have something exciting to focus on.  Our friend, Elizabeth, has designed a #teamjonahgoodall shirt as a rallying point and a fundraiser.  (http://www.booster.com/teamjonahgoodall) The proceeds of the shirts will go directly to our local Ronald McDonald house as a way to provide tangible support to others walking a hard road.  We know that so many people are on our team, supporting us, praying for us and encouraging us as we go.  You don't have to have a shirt to be part of the team, but it does add a bit of novelty, and takes the focus off the hair.  (pretend I just inserted a smile emoji, but I only know how to do that on text)

Life Got Real

We're in the PICU at Lurie's today.  Actually, we've been back at Lurie's since Sunday.  While at RIC this weekend, Jonah spiked what is called a neutropenic fever, which means that while his while blood cell count was low (in his case it seems to actually be 0) he got an infection.  For patients receiving chemo, these neutropenic fevers are their biggest risk.  Unfortunately in Jonah's case, due to  some miscommunication with RIC and general lack of urgency, things got pretty bad and Simon & I ended up driving him the 1/2 block in our van as opposed to waiting for transport.  It was by God's grace that we made that decision, because shortly after arriving at Lurie's ED, he went into septic shock.  It felt a little bit like being on the old Chicago-based show ER with all the medical team around and so much seriousness.

God is good, lots of people were praying, and Jonah is doing MUCH better.  We're still supplementing a few specific electrolytes and watching his platelet and hemoglobin levels, but he's stable and resting.  We learned a lot through this experience about how to handle fevers as well as how to manage our relationship with the medical teams at both hospitals.  We also felt the power of prayer hold us up in a time when the act of breathing should have been hard.  Don't get me wrong, we were scared, very scared, but there was a real sense that God was there.  Actually,  just that morning, my devotional reading in "Jesus Calling" was titled "Entrust Your Loved Ones to Me" and used the example of Abraham & Isaac.  During the chaos of the ED, I was reminded of the reading and felt like God was saying, "I see you, I've got this."

We will likely be at Lurie for the rest of the week, maybe beyond, we don't know yet.  What we do know is that we'll be establishing better guidelines with RIC before we go back so that things don't spiral out of control again; because although we don't know when or how, we do know that there will be more neutropenic fevers and we plan to be better at managing the situation.

RIC

After 4 weeks at Lurie Children's Hospital, we moved to RIC (Rehab Institute of Chicago) yesterday.  RIC is the top rehab hospital in the country, and everyone has high hopes of how rehab will help Jonah improve from the unintended effects of all of the brain trauma.  It is however a different place than Lurie's and we have a shared room in an old rehab hospital which is proving to have it's own challenges.  Quite time doesn't start until 10pm, and although our roommate isn't a rule breaker, they're also not early to bed folks which is making it hard for Jonah to sleep.  Also, apparently some of the seamless nursing we experienced at Lurie's was due to communication more than the written orders, so we've had a few bumps as we learn life in rehab land.

Our manta is "this is the best place for Jonah to be", and Simon and I can do without the creature comforts that Lurie has to offer if this will help Jonah regain some independence.  Our prayers are with the therapist, and we expect that we will all grow as we learn to be outside our comfort zone.

Brother Love

Sometimes as you raise your children, all you see are the signs that you've still got a lot more developing to do.  Sometimes, they show you the person that God is growing them to be and it blows your mind.

A few months ago our church passed out key necklaces with encouraging words like courage, love & hope.  Someone close to us recently gave Anna the "love" necklace as they felt that she could use the encouragement.  This week, Anna decided that Jonah needed the encouragement even more than she did and presented him with the necklace today.  It was very important to her that she be able to give it to him as a visible sign of her love for him, and a beautiful glimpse of her heart for her brother.

Noah's demonstation needs fewer words, but is equally as moving to us.
(The note says "Dear Sam, I do not need your two dollars. But your present can be to pray for Jonah and family.  Here is two dollars back.  Love, Noah)

Sympathy Effects

18 month old Jonah with his older buddies Zach (left) and Ben. 

We've heard about the side effects of chemo and now we're seeing them with the introduction of Cytoxan yesterday.   Despite anti-nausea medication our little Jonah is now vomiting in addition to the mouth sores that started with the Methotrexate on Tuesday.  It's hard to see these side effects when we can't see the good effects of the drugs but have to trust that they mean that they're working.   Unfortunately that doesn't explain why Noah and Anna are also throwing up - is there such a thing a sympathy vomiting?  

While he's also sleepier as a result of the chemo we're fortunate to still get to see his big blue eyes which are beginning to periodically follow people in the room when he's more awake.

Now faith is confidence in what we hope for and assurance about what we do not see - Hebrews 11:1

Big Kid Fun...

This week I went back to work almost full time.  The whole Groupon team has been so supportive and encouraging over the last few weeks and work has been a welcome distraction. I do however miss spending time with the other kids who have been spending lots of time with my mum, our nanny / adopted family member Liz, as well as our amazing friend.  I however got to spend a few moments at Ronald McDonald House's rooftop garden with the other kids this morning. We were hoping to see the air part of the Air & Water show but we're too far away and just see an occasion plane in transit. 

Earlier this morning Stephanie and I visited the Rehabilitation Institute of Chicago for a tour as we should be transferring there next week to start rehab after this first round of chemo is complete. They're the #1 ranked rehabilitation hospital in the U.S. so we're really fortunate that Jonah will get the best possible care.  The facilities are however old and all rooms are shared so we'll have to used to the dramatic difference between that and the beautiful 2 year old Lurie Children's Hospital with its bright, modern, airy spaces and state of the art private rooms.  RIC is building a beautiful new hospital themselves, but it's still a couple of years away from completion.  New facilities and our comfort are at best priority #967,483 but we may have to remind ourselves of that once in a while. 

Jonah now has low enough mexotrethate levels (first chemo drug) that we should be able to proceed to the next phase of chemo either later today or tomorrow.  He's also getting slightly more responsive each day which is encouraging.  We see both more consistent reaction to people coming into the room and a little core hand squeeze response to simple questions.  He loves attention of people talking to or reading to him which visitors are welcome to do.  If you're planning a visit and own a favorite children's book feel free to bring it to read to him. 

Thanks again to everyone for the continued support, prayers, bible verses and words of encouragement.  We're so blessed by each of you. 

Moments

 Julia & Josh, already BFFs

 Keli & Anna at Six Flags

 Noah & Anna playing baseball on the roof of Ronald McDonald House

Noah & Anna, Abby & Nathan (their mom is a friend of mine from middle school) on the walk back from Millennium Park

Mummy, Anna & Auntie Leslie - note that mummy & Auntie Leslie are wearing the same jacket

Noah & Anna with Southpaw, who visited the 12th floor of the hospital

Crazy friends at Six Flags  (Noah's been twice in 3 weeks)

Anna & Zach hanging out

The taking of Nay Pier with the Goodalls and Tofilons

Beach day with the Roberts

Ida and Julia are fast friends even if there's an ocean between them (Ida's from Denmark)

Anna got to set her butterflies free from a project that didn't go quite as planned

Noah & Mads played ball - the last time they played together, Noah was 3

 Posing with "Old McDonald" as Julia says

Julia & Callie goofing off

Liz & the girls enjoying the random play areas in the hospital

I don't know if this is true for all mums, but for me, one of the best ways to show love is by loving my kids.  In this challenging season, I am clearly well loved.  I just wanted to share a few moments that the kids have been able to enjoy in the last 3 weeks as this adventure carries on.

The idea of this post also has encouraged me to take more pictures when people visit, so if you come to visit and I don't snap a photo, please remind me.  The pace of hospital life is distracting, but I'd love the picture reminders of love poured out.

Started

After our 2 1/2 week pre-qualifying events, Jonah started his marathon yesterday afternoon.  He received his first doses of chemo yesterday afternoon.  One of the drugs used is a doozy, so we'll spend the next 2-3 days washing it out of his system before the rest of the cycle completes.  If all goes according to plan, we'll be heading to Rehab Institute of Chicago (RIC) early to mid next week.

A dear friend encouraged me to share some of the less serious moments, because our days are not only filled with heavy hard things, but also with milestone achievements and fun.  First of all, the other kids have been showered with love from everyone.  They have had playdates at our house, at other people's houses, visits to Six Flags, Millennium Park, Lake Michigan beaches, the aquarium, Build-a-Bear, the Lego store, Navy Pier and on and on.  In addition to all that fun, they've enjoyed the 12th floor at the hospital which is the family fun floor.  12 has the front of a real fire engine to play in, video games, play areas, White Sox players, Wheaton football players, therapy dogs and more fun visitors.  Certainly they miss the regular rhythm of live together, but on the whole they're having a good time.  Jonah himself is doing really well with all of this therapies, and with assistance will sit at the edge of the bed for good periods of time.  He has had great success on the tilt table and has a special stroller-like chair that allows him to be wheeled around the hospital.  With the help of the chair, he too was able to go to 12 and see the therapy dogs, which was right up his alley.

Another bright spot has been all of your smiling faces and support.  The texts, calls, emails, cards, gifts and visits will be cherished in our hearts forever.  When we needed it, y'all showed up.  That in itself is no small thing.  We may not be timely in our responses, but it's not because we don't appreciate the support.  Every effort is encouraging and appreciated.  Thank you for being here with us, to help us remember the fun.

Weary

Weary, that's how I feel today.  I feel weary from trying to pre-qualify for a marathon I don't really want to run.

The MRI this morning showed an increase of fluid in the subdural space of Jonah's brain.  It is in a similar space to the epidural hematoma that he had immediately after the first surgery, but it is now subdural and unrelated to the first (or second, which was in a totally different area).  The medical team is struggling to find the pressure balance for Jonah.  They know that he needs help draining his excess cerebral spinal fluid (CSF) or he'll end up with hydrocephalus again, but they know if they drain too much, he ends up with hematoma.  Clearly we haven't found the right balance yet.  They have again adjusted his shunt setting to reduce the amount of CSF drainage and we will do another MRI tomorrow morning to see how things look and if the adjustment was adequate.  If not, another surgery is not ruled out.  It's hard to see the pained look on the medical team's faces as they have to walk this road with us.  I hate to see their sympathy but am glad that we're more than just a case to them.

This development sets chemo back at least a day, maybe longer.  Until neurosurgery clears Jonah, he won't be allowed to start chemo or any rehab outside of the hour or so of combined OT, PT & speech he receives in hospital.  So here we are, weary from our many encounters with neurosurgery, waiting to start the hard marathon of chemo and rehab, and we just can't seem to qualify.  It's hard to want to qualify anyway, who really wants 6-9 months of chemo and a hard rehab road?  I've never been a real runner, so I don't "really" know, but from a brief running period I remember using small markers to keep going, the next mailbox, the next tree - really anything to move one foot forward at a time.  I guess that's where we are now, looking for the next mailbox, the next tree - the next therapy, the next imaging - one step at a time.

In a story that may seem short on good news, last week a baseline auditory test was preformed which is needed pre-chemo.  That test indicated the possibility of right sided nerve/hearing damage from everything that's gone on.  This morning a more advanced test is being conducted and so far the results seem promising.

One step at a time friends, one step at a time.

Big Day

So it seems official, Monday we should start our first round of chemo.  Jonah's second blood clot surgery set us back a few days, but surprisingly not that many.  The plan right now is to transfer to the  oncology floor on Sunday to secure a bed.  Monday morning we'll do a quick MRI (MR Vent actually) to make sure that the ventricle sizes remain appropriate and then chemo will begin.

Last night I was reading the drug sheets for the drugs we'll be using in chemo.  Everyone knows that chemo is tough.  We've all known someone who's known someone or seen it portrayed on TV.  Reading the very real side effects that we're about to inflict on Jonah is crushing.  I know that treatment is his only chance, but it is not without a high cost.

Right before the first surgery, Jonah told me that mummy's are always brave.  How I wish that were true.  I don't feel very brave right now.  It's heartbreaking a million times a day to see my little boy like this.  The Jonah I know is a big liver of life and a big lover.  He has more questions than there could ever be answers to, he is adventurous and determined, he loves people, is quick to smile and laugh and is always ready for a snuggle.  He specializes is squeezes so big you think your head may pop off.  He is creative and silly, interested in cooking and loves to be read to.  I could go on and on about the Jonah that I know and love with all of my heart.  Right now it's hard to see that Jonah, as he remains in this land in-between.  His eyes are open, but it's almost impossible to tell what's going on inside, how much of Jonah is still Jonah.

Amidst all the sadness, we see the fingerprint of God everywhere.  There are countless stories that we have been part of that make us say "Only God" (to borrow an expression from Bill).  We draw encouragement from those stories knowing that if God cares enough to be in the small details, He is not making us walk this alone.  That is actually very evident in the support of our community which has been overwhelming.  We feel well loved, and that carries us through some of those low moments.

Joshua 1:9 says "Be strong and courageous, do not be discouraged for the Lord your God is with you wherever you go. "  I may not be able to be the brave mummy that Jonah suspects I am, but I pray that because God is with me I can be strong and courageous on this journey.

Waiting Interrupted

Posts have been harder to come by in these past few days as we've just been waiting. Waiting for Jonah to heal from surgery, waiting for Jonah to come off the vent, waiting for Jonah to "wake up", waiting to start treatment - just a lot of waiting. Sunday, Jonah was able to be removed from the ventilator and managed the transition to room air very well. The medical team views this as a big win, and we love seeing all of Jonah's face again, but it's done little to make the waiting seem more bearable. Of course, things can change in an instant here and Tuesday morning our nurse came in and turned off Jonah's NG feeding tube and said that neurosurgery would be in within 20 minutes. Luckily only a few minutes transpired before neurosurgery came in and told us that recent imaging showed another growing blood clot on his brain that would need to be surgical addressed. Surgery ended up being straightforward, uncomplicated and successful. Current imaging shows that the whole clot was removed and that Jonah's brain is reclaiming the space. Additionally we have seen a decrease in Jonah's agitation level, so all around surgery was a good thing.

Jonah seems to be in a very stable place right now, so we expect to move off of the PICU this afternoon and head back to the neurosurgery floor. As soon as neurosurgery releases us, likely early to mid next week, we'll move again, this time to the oncology floor and will begin chemo. Until then, we're waiting again.........