The Past Month and Forward

First, we apologize for not updating sooner.  A lot has happened since we last blogged, and I'll attempt to keep it fairly succinct.

Ari received high does chemotherapy (as blogged earlier), a stem cell transplant following the chemo, and many, many days of antibiotics, pain medications, and platelet and blood transfusions.  The team of doctors monitored his kidney and liver function all along and gave him help with some drugs to shed excess fluid he was retaining.  Our little guy did amazing.  His counts recovered a little quicker than the time frame they had originally told us, and we were able to be home the week before Christmas.  Since then, we've been managing his pain, making multiple visits up to clinic per week for blood and platelet transfusions, and attempting to get Ari back on some semblance of a sleep schedule.  The latter seems to be the most challenging at this point.  We've been trading off getting up early and sleeping in.

Currently, we're making 2 trips up to Portland to the oncology clinic each week so they can give Ari transfusions as needed.  They are hopeful this will decrease to once per week in the very near future.  Ari seems to be a little more himself.  He's playful, loving books, and rolling all over the place.  He's also communicating much more; he's learned the art of fussing!  This can be difficult as a parent in this situation as we try to wade through his desire to be picked up or if he's feeling any real discomfort.  He keeps us on our toes!

Christmas for us was refreshing to be home and not in the hospital.  We had decided early on that week that we wanted to fix some really good food throughout the day.  So, we woke up and fixed a breakfast that probably could have lasted us the rest of the day.  Instead, we skipped lunch and fixed a massive dinner consisting of steak, brussel sprouts, homemade rolls, and corn casserole.  I think we may have woken up full the next morning!  We were thankful to get to Skype with our families over Christmas Eve and Christmas Day to see and enjoy being with them.  We laughed, opened gifts, and made funny faces in the camera.  It was overall a really good couple of days.  Ari enjoyed opening gifts; although, he tired quickly but seems to really enjoy his new couple of toys.

Luckily, I have another long weekend for the New Year's holiday this coming week.  It will be nice to have another extended time together as a family.  After the new year greets us, we will have a 4 week wait for Ari's next MRI.  Unfortunately, it is scheduled for a January 30th, which is a Friday, and we are not scheduled to be in clinic until the following Wednesday to learn the results.  I'm sure that will be a "fun" wait.  We continue to be hopeful and prayerful that Ari will be cancer-free.  The task for us right now is trying to return to some normalcy in our daily lives.  I recall reading a blog post from some of our good friends who are battling the same cancer with their little guy.  I read the post early on in our journey as we were connected with them through our wonderful oncologist.  I would like to share, briefly, what they wrote.  Here are two excerpts.

"We've been stagnated under the immediate and the urgent for so long.  Now, we have this chance to move...to be in forward motion, if you will, away from the treatment and the upheaval and to be out from under all of that."

"We have been wanderers in the treatment phase for so long - I've written a few times about the urgency that barely allows you to make eye contact with life, and now, we've been granted the great gift of reprieve.  It's terrifying to stop fighting and live, but it's amazing to stop fighting and live.  We've been given the gift of life - now we actively seek God for our place in it and the courage to assume what He has for us when He makes it clear."

Firstly, Bob and Ellie (the writers of these two excerpts), are probably some of the wisest and most steadfast people in their pursuit toward a relationship with God during seasons of tribulation.  They have been wonderful to us through this journey.  Secondly, this is precisely how we are feeling.  Our oncologist told us that many families experience more anxiety with treatment coming to an end compared to it starting.  I think we feel the weight of that right now.  I think we also feel the weight of how fear can paralyze and stunt experiencing life, each other.  So, we cautiously, in a way, move forward and live, seeking God's provision and guidance.  We know it will be a process to transition back into our "new normal."  We pray we will have the courage to live in faith and boldness and not be controlled by fear or uncertainty.  We, also, continue to invite you all to journey with us.  

Ari getting his stem cell transplant.

Santa came early to the hospital, so Ari got to meet and sit on his lap.  

Rocking the hat.

Ari's new favorite game: take out all of the toys in the tub and scatter them all over the floor.  It's awesome!