As I was looking back at my calendar today, trying to track Patrick's progress throughout his cancer journey, I realized that there was a 2-3 week heavenly "sweet spot" between the time of the GOOD NEWS and his recent decline. When we received the GREAT news that Patrick's tumor had disappeared from his recent MRI scans, we were overjoyed, relieved and excited---thinking once again about a happy, healthy, thriving future for our family. I continue to praise God for seemingly plucking that nasty tumor from PK's brain, but, honestly, I also want to shake my fist at Him some days, since Patrick seems to now only be declining.
Over the last few weeks, Patrick's tripping and clumsiness (ie: neuropathy) has taken a MAJOR turn for the worse, to the point where he can now barely walk, do anything mobile on his own, think clearly or express himself well. Patrick's dad is visiting us this week from China, and he's seen him significantly worsen daily, even while he's been here. The doctors have various speculations as to why this is happening now, but none of their conclusions are certain, and none of their suggestions for a cure seem to be working. We've removed various chemo drugs from his protocol, we're weaning him off of an anti-seizure drug, and doing anything else we can think of to help him improve. And yet he spent all of this morning in bed, even after sleeping soundly through the night. I was upstairs in the kitchen getting lunch ready today, when I heard Ceci call up to me, "Mama, Daddy fall near my potty! Be careful Dada, be careful Dada, uh, oh....Mama!" (No two year old should have to watch her daddy fall, or know how to warn him to be more careful. Shouldn't it be the other way around?!?)
Will you pray earnestly with me that he will improve (soon!)? We're all pretty discouraged, and I for one am EXHAUSTED. The Bible says that God assigns us our portion, promising to give us no more than we can bear...but I've got to admit that I think my portion is a little too hefty for me right now. I'm in total survival mode. My arm muscles have become strong as I lift our tall 2 year old onto her bike, or into her car seat. And now they need to get even stronger, as I lift my husband back into bed when he falls out, or heave him off of the couch, so that I can help carry his wobbly weight to the bathroom. I'm having flashbacks of my high school job in the neighborhood nursing home, where I'd help the nurses pick up an elderly patient who had fallen to the floor, or hold a fragile, wrinkly arm as I guided an aging hero to their walker or chair in the dining hall. (Who would've known that those learned arm holds and balance techniques would come in handy with my 34 year old husband fifteen years later??)
We meet tomorrow with Patrick's oncology team, who could likely suggest that we get another MRI to see if there's anything new happening in his brain. Will you pray with me that he will have another clean scan, and/or that there will be a very clear reason as to why he's feeling so poorly now? He's then set to begin his 5th round of chemo on Friday, and this one will be done inpatient again, to protect him from injuring himself while attached to his chemo bag. I'm sad to see him heading back to the hospital again, but I'm also a wee bit relieved that I'll have a tiny break from caring for him 24/7.
Please also pray that we'd be granted a deep sense of peace and hope in the midst of all of this. It's SO hard to imagine what our future looks like now, when today feels so grim. He's slated to bounce back 100% from all of this, and go on to live a full, happy and healthy life....and yet it's really hard to imagine any of that right now. Our oncologist warned us to put off expanding our family for the foreseeable future (if at all...) given Patrick's condition right now; and although I see the practical truth in his suggestion, I grieve at the potential loss of our dream for more kids. He also indicated that if Patrick had received standard treatment at a normal medical facility, given his kind of cancer he would likely only have 2 years left to live. But given the radical (even if uncertain) protocol they used on him 7 years ago, and the one they are administering today, he should have a longer lifespan than that... (Here's hoping for 52 more years!) We celebrated his birthday yesterday in a very understated fashion, as he wasn't up for much celebration, but we did sing Happy Birthday to him (Happy B-party, as Cecilia sings it...), and the silly tag line "and many more..." felt anything but silly this year.
I feel like I'm rambling (sorry), but I can't seem to order any of my thoughts or feelings these days. Thanks for praying, caring and keeping up with all of this: it means the world to us. I'll let you know when I learn more.