Random Thoughts While We Wait......

While Alex was having his bone marrow biopsy on Friday, I stood outside the room listening (yes, I listen in on these things).  All the while reminding myself  "God loves him more than you do"; a mantra over and over in my head as I silently pleaded with God to take this cancer away.  I wasn't completely convinced that could be true because how could anyone love my children more than I do?  I was racked with guilt after Ian died, afraid that God had taken him because I love him (present tense, not past) and Alex & Amy perhaps more than I love God; at least in a demonstrative way.  I don't know....does continuing to follow God through the valleys show love?  I've heard from two different places this week about learning the most from the valleys not the mountaintops.  If I've spent so much of my life in the valleys, I must be a slow learner.  People have commented on how much they admire my faith and how strong it is - I honestly don't see it.  I see a woman filled with questions, demanding answers, unsure if her faith will survive this latest assault, angry that God would put us through this kind of trauma again, preparing for the worst but hoping and praying for the best....I don't see it....I see failure and disappointment not a bastion of faith.  But I continue to cling to a God who I believe loves me (and Alex) in spite of all that.

As we wait for Alex's test results, there's a few things I've been meaning to write down.....
Lessons learned from our time at Loma Linda Medical Center as an inpatient:
1) there is poverty around us that I often don't see up close but we saw it there and honestly, it was a little frightening.
2) as a doctor, when you come to tell a family that their child (no matter how old) has cancer expect to spend more than 4 minutes them.
3) hospital bureaucracy is puzzling - I'll leave it at that.
4) when examining a patient with Lymphoma, don't be overjoyed that the lump in their neck is still there after treatment as it will be a good marker for any future progress - glee is not appropriate in this circumstance.
5) when going over treatment options, start with the diagnosis.  Don't assume that we somehow magically know that our son has Stage 4 cancer and it's worse than we ever imagined.
6) the Pediatric Heart Transplant team still walks on water.

I've been rather surprised, but pleasantly, that I'm not completely neurotic as we wait for Alex's test results and I know that calmness of spirit is a gift and God has somehow been able to quiet my soul without the aid of medication.  We're hoping for a phone call on Wednesday with results and how we'll proceed from here. His care is complicated with timing when he'll resume his immunosuppresent medication and how much is too much.  We'll have to find a balance between keeping the cancer at bay (if it's gone) and not rejecting his heart.  I never knew our lives would be like this 28 years ago when Alex got his new heart but I wouldn't trade a day without him.

Alex and I have a routine every night.  We do essential oils on his feet (I may have created a ritual he'll expect till I die cuz he's not complaining about these nightly foot massages) while we watch 'The Andy Griffith Show' followed by three episodes of 'The Rifleman' (I don't like the change to the theme music in Season 4 but there's nobody to complain to anymore).  Sometimes popcorn is included before it's time for bed.  After I get his diffuser ready with more essential oils, we tie a knot in his prayer quilt thankful for a good day then I kiss him on the forehead and give him butterfly kisses on the top of his bald head (he always giggles because it tickles).  Let's not forget the 'I love you's' before I close his door.  It's a lovely way to end our day. 

But for now, we wait......