So Much To Celebrate

Jonah made a cameo appearance in his preschool class.  Since he finally finished treatment the week before school ends, he's not going back in any formal capacity, but it was good for him to be with old friends.

Now that everyone is home, we can focus on the rhythms of "normal" life.  We have a long standing summer Saturday tradition to go to the Palatine Farmers Market for breakfast and hang out time.  It was a sweet return this past weekend.

One of the Proton Center's traditions, is giving graduates a "challenge coin" as a mark of their bravery and a physical token of the unseen battle that was completed.  They also use the "challenge coin" around town - if someone from the Proton Center (staff or former patient) recognizes someone out and about town at the local ice cream shop (or pub), they can tap their challenge coin on the counter and if the other can't tap in response, they're buying that round.  It's a cute way of connecting and uniting a small population of unintended warriors.

#teamjonahgoodall strong!  Here's the family so excited to help bring this chapter to a close.
  

Back at the spring auction, we won a movie night at preschool.  The way scheduling worked, Jonah was able to attend and invite a few friends to join.  They watched Charlotte's Web, but I have to confess that these kids mostly chatted to each other and ate snacks.  It was a sweet celebration.

Jonah got his central line out last week as well.  The magnitude of this blessing can not be comprehended by someone not familiar with central lines, but with a beach vacation a few weeks away, this removal is as big a deal as finishing treatment.  It means we don't have to worry about flushing the line daily, changing the caps every 3 days, weekly dressing changes (at a min), keeping it clean and dry and the infection risk.  Jonah's central line was a necessary evil for many months, but we were all delighted to see it go!

Last week gave us so much to celebrate!  The completion of radiation, the end of treatment, Jonah coming home full-time, the removal of a central line, a cameo at preschool and the ability to engage in old traditions.  Ahhh, isn't life sweet?  It's been a hard fought road to get us to this point and we are so very grateful that we get to experience these celebrations as we know that these are accomplishments that not every cancer family will get. 

As expected, we are entering a different season of complication as we all adjust to life together.  As Jonah adjusts to not always being the center of attention - without an adult at his beckon call.  As Anna adjusts to accommodating her little brother but also not loosing her sense of self.  As Noah learns unique ways to relate to his brother that are different than Anna but build their relationship.  As Julia adjusts to how to be the youngest in the family but not always the least able.  As Simon and I adjust to life with 4 kids with various needs.  These adjustments are the good hard that we've longed to work out.  It may not always be pretty in the coming weeks, but it will certainly be worth it.

There is a big "but" to all of this celebration, excitement and joy though.  Cancer does that to you - it robs you of the ability to fully and only revel in the good.  But, we need to mourn all the ease of being Jonah that is lost.  But, we still have a schedule dictated by therapy and follow up doctors appointments so we're not actually as free as it may seem.  But, we need to grieve the loss of the life that we had expected and planned for.  But, we live in the reality that relapse is only a scan away.  But, we have to figure out how to mold our family and activities to fully incorporate a joyful soul who needs a walker or wheelchair.  But, we have to navigate a world where people mostly expect only the thankfulness of making it this far without thinking of all of the buts.

For now, just as we have from the beginning, we walk this out one step at a time, relying on God to light the next step and catch us when we stumble.  We're not remarkable people of great strength or pillars of faith to be impressed by.  We are just like you - working out the circumstances of life one day at a time, trusting that God is good and present in our story.  

As we move forward, we keep an eye on June 28th.  For those of you who know me well, you may realize that that is my birthday (a big one at that), but more importantly, that is Jonah's first post-treatment MRI.  We won't officially have any results until the 29th, but we are already praying big prayers of a birthday gift that no human can provide - a clean MRI, a confidence in the success of treatment.  Please pray with us.

FACTS:

1 in 5 children diagnosed with cancer will die within 5 years.

1 in 3 children diagnosed with cancer will not live out a normal life span due to related complications.

The average age of death for a child with cancer is 8, causing a child to lose 69 years of expected life.