Do Not Be Discouraged

I feel so grateful that at the beginning of this journey, God put Joshua 1:9 on my heart.  It says, "Be strong and courageous.  Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." Walking the journey of cancer requires all of these traits.  Sometimes you have to be strong, sometimes you have to be courageous, sometimes you can't be afraid and sometimes you can't be discouraged.  In everything God walks with us.

Today is a day where the reminder to not be discouraged is important.  We are done with round 2 of chemo and were actually "healthy" enough to go to RIC this weekend but they don't take a lot of weekend admissions.  We spent all day gearing up to hear from RIC that they had a bed for us and the call never came.  There were assurances though that they'd have room for us tomorrow.  Unfortunately, Jonah woke from his nap this afternoon with a fever of 101.3.  We knew from this morning that his ANC was low, so this counts as a neutropenic fever.  Best case scenario, we're clear for RIC on Wednesday, but it is disheartening to get a neutropenic fever before we even get to leave the hospital.

Getting back to RIC is so important for Jonah's recovery from the posterior fossa syndrome.  Strange as it is, we really can't wait to get back there.  The amazing thing is, that even in the disappointment of our delayed departure, I see the grace of God.  Had there been a bed at RIC for us today we would have gone and they would have sent us straight back, our day spent in ambulatory transport.  Instead, today he was able to do in-patient speech therapy and PT.  God is with us every step of this journey.

Another aspect of this journey that struck me as today in the need to not be discouraged, is Jonah's speech progress.  Everyone says that he's so close to regaining speech as they observe him laugh, blow kisses at cowie, howl in protest during vitals and get angry when strangers come in his room or he's told not to pick at the NG tube in his nose.  The thing is, he's not there yet.  Sometimes they put kids with posteria fossa syndrome on anti-depressants to help manage their frustration that they can't do or say the things they want to.  Today, after observing how upset Jonah got, our oncologist mentioned this might be in our future.  It hurts a mother's heart that in the midst of this impossible situation, my little guy's spirit could be struggling as much as his body.  It just seems so unfair that this has to be so hard for him.  On this front, I have yet to identify how God is specifically walking with us, and so instead I repeat Joshua 1:9 over and over again, knowing that it is true even when I can't see it because I have seen His faithfulness in so many other ways.  -- Do not be discouraged for the Lord your God is with you wherever you go.