Wednesday, November 30, 2011

Waiting for another "sweet spot"

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.

Monday, November 21, 2011

Dang You, Neuropathy!

So all of PK's tests and scans have come back clean, which means he has NO new/more cancer, NO bacteria/infection/virus, etc causing his neuropathy (which shows itself as clumsiness, a lack of coordination, sudden falling, legs buckling, etc.) The good news is, obviously, that there isn't any new cancer bugging it's way into PK's body. After days of no answers, here is what the doctors are telling us now, and I'm just going to cut and paste this from a recent email Patrick's dad sent to his friends, explaining the latest and (not-so) greatest:


Thanks for all the warm messages of love and support, which mean more than you know.  It reminds me of what a Fuller professor told me last time Patrick went through chemotherapy - "such crises give us the opportunity of showing you how much we love you."

Patrick received some very tough news yesterday.  After many tests and much deliberation, his NIH doctors - Wilson & Dunleavey - have concluded that the neuropathy he is experiencing is a result of the chemotherapy after all.  Their hypothesis is that one of the chemos used 7 years ago left a vulnerability that was then triggered by two of the chemos in his current "cocktail."  They've removed those two now, but the bad news is that the nerve damage is permanent.  This means that Patrick has lost the function of some of the nerves in his right leg, which makes it impossible to walk without help, and also some of his short-term memory capacity.  The docs believe that in both cases full functioning can be eventually recovered through intensive rehabilitation, and have referred Patrick to a superb rehab facility that will work with him as soon as he is ready.  Thankfully, the body is amazingly flexible and resilient, and can develop alternative pathways to regain a damaged function.  However, it's a long road to get there.

So, the road ahead will most likely include physical therapy (to strengthen his limbs and coordination), and cognitive therapy (which will strengthen the neuroplasticity of his brain, helping it to re-grow to it's former agility). We're obviously disheartened at the potential for a long recovery period, and the fact that just three weeks ago he seemed "fine". But, we are trusting in God's providence and mercy to help us through this new hurdle.

As we look ahead to Thanksgiving this week, we are thankful for so many things:
-PK's remarkably quick response to chemo
-NIH taking us on, and their amazing care of Patrick
-Steve and Nancy Skancke taking us into their home to live with them during this strange season of unknowns
-So many friends and family who have demonstrated such poignant and tangible displays of generosity, kindness, love and sacrifice for us
-For Ceci's health, joy, and apparent resiliency in all of this

And we look forward to next Thanksgiving when we can be thankful for a clean bill of health, maybe the promise of a new baby on the way, direction for PK at work, and clear vision for our family as we try to figure out where God might have us be/live next.

Thanks to you for hanging in there with us. It looks like the road to recovery will be longer than we had imagined, and we continue to be so thankful for each of you (even those we don't know or haven't met yet!) who are reading this, praying for us, checking-in with us periodically, sharing our story with others, etc.

Blessings to each of you this Thanksgiving!

Patrick, Julie & Cecilia

Thursday, November 17, 2011

Results Pending...

There is not a lot of news to report, except that whatever initial results have come back from Patrick's EEG and spinal tap have been clear or inconclusive. There were several factors studied from the lumbar puncture, and a few of them will take a few days/weeks to register a result, so we're in the wait and watch mode right now. PK will be at NIH through Saturday, while he's receiving chemo, and maybe longer, if something new comes up...

I'm leaving tomorrow to spend a long Thanksgiving week with my family in Boston, and PK is slated to join me Tuesday-Friday. We'd REALLY love for him to be there, but we're taking it day-by-day, hoping and praying for good results. Thankfully his mom and sister (and family) are here to keep an eye (or two or five) on him while I'm gone.

Please pray for good but conclusive results to all of his recent testing! The unknowns are driving us crazy! He's still having a LOT of issues walking, as his balance and gait are totally off, and he's also been nauseous and frequently vomiting over the past few days, so the doctors are scratching their smart heads, trying to figure out what's going on. Answers (as pleasant or unpleasant as they might be) would very helpful right about now!  We'll update you as we find out more.

Wednesday, November 16, 2011

New Tests Planned...

I heard from Patrick this morning that his doctors are scheduling some new tests today, to determine what is going on with his wobbliness. Apparently, they don't think it is being caused by his chemo drugs, and are wondering if there's something else happening internally. He'll have an EEG to monitor his brain's activity, and spinal fluid removed from the location in his skull, where he had an ommaya reservoir port inserted (and then removed) during his first chemo treatment 7 years ago. I guess it would a more accurate draw of the fluid in his brain, rather than going through his spine.

We're worried, to say the least, that there could be more lymphoma in his body, and hoping (either way) that answers are discovered ASAP.

Please pray that this is nothing as serious as it sounds, and that we remain hopeful in the midst of the challenges!

Tuesday, November 15, 2011

Wobbling Around

Patrick has begun his fourth round of chemo, and it seems that he'll be doing this round inpatient at NIH. Over the past few weeks, we've noticed that he's become VERY wobbly on his feet. His legs will buckle under him, and he's lost some sensations in his fingertips. These issues grew much worse this past weekend, to the point where he could barely walk without the help of someone else to support him. So, NIH is evaluating him there 24/7, as he receives his chemo. It's sad to have him checked-in to the hospital again, especially since he's been doing SO well, and since his tumor is gone, but I also feel relieved that he won't be falling at the house, or squashing his chemo bag if he were to stumble. His oncologist is working with his neurologist to determine what exactly is going on. They are fairly certain that it is one of his chemo drugs that is causing some sort of neuropathy (Google that one if you're bored/curious!), as there is apparent nerve damage at his extremities (his hands and feet), and thus he doesn't feel his feet hitting the floor, or his hand grasping at something, etc. Apparently this can be a side effect to some of his chemo, but they're not sure which drug is causing it. They've reduced or eliminated some of his chemo this round, hoping that these strange side effects will diminish, but of course this is done at the risk of hampering with the battle against cancer, going on in his body. The doctors are fairly confident that his mobility will return completely, but it could take some time and therapy.
Please pray that the correct drug will be isolated and identified, and that Patrick's doctors will have wisdom to know what to do next. Please also pray that his coordination will return completely (and soon!) It's so hard to see him so gimpy, when he's mentally and emotionally so strong and alert these days. :(

Thursday, November 10, 2011

VERY good news!

We are waiting in the pharmacy's waiting room at NIH, stocking up on the trunkload of meds that will accompany Patrick's 4th (out of 6) chemo cycle. (We're half-way done, folks...yay!) I wanted to send out a quick note to update you all on some good news we just received: Patrick had a PETscan and an MRI today, and BOTH showed NO tumor, NO unusual "enhancements"...and NO cancer! Patrick's oncologist was overjoyed at how Patrick has responded to the treatment, and confident that he would not have to undergo radiation at the end of the chemotherapy. We are relieved, to say the least, and thankful to God and the amazing medical team at NIH for his healing! (And thanks to you for your continual prayers, concern and emotional support!)

We still have three more rounds (9 weeks total) to go, so we're not out of the (chemo) woods yet, but we're so glad that his cancer is gone, and that these final rounds of treatment are mostly for preventative reasons.

So, overall, we have much to be thankful for!

(Long live the fanny pack!)