Today is Monday, April 10th. The eight-month mark since Patrick’s diagnosis.
On our way out of town for spring break in early March, Patrick received the fantastic news that his bone marrow is negative for Mantle Cell Lymphoma. Cheers and checkmarks!! One more test in the “done and passed” column.
Not a bad way to start spring break. We enjoyed that news and that vacation. A lot.
And then all of a sudden it was April.
Last week, Patrick endured two long days of back-to-back procedures. Both procedures required fasting. We didn’t plan this well. We just wanted to get it done as quickly as possible. That made it harder on him than it had to be. But he is such a determined and focused man; he handled it like a champ.
Here’s the breakdown of how last week’s trip to Houston went. We rolled in on Sunday evening (April 2nd) and had an amazing dinner at Dish Society. Totally took advantage of the half price appetizers and drinks because we knew Patrick wouldn’t be eating much the next day.
Early Monday morning, he went in for the usual blood work. Then we checked in for his surgery two hours early, just in case they wanted to, you know, get him in ahead of schedule.
Cue the knowing laughs.
Yeah that didn’t happen.
Monday’s surgery was to place the port in his chest. The port is what he’ll need for chemotherapy. It takes the place of constantly having IVs going in and out. The port surgery being scheduled last week was Dr. Wang’s vote of confidence that the final test would show Patrick to have achieved a complete response to Part One of the trial. Meaning, it is now time to prepare for part two, for real. Remember back in August when I explained the whole trial and I said we’d talk about the “dreaded part two” later?
Later is here.
The surgery went well and he came out fine, but hungry. And since they were three hours behind schedule and we were two hours ahead of schedule (I feel like I’ve done this math equation before) Team Burke had a little setback to absorb. By getting out of surgery at 4pm instead of 1pm on Monday, Patrick missed the teeny, tiny window of opportunity for a light lunch before he had to start fasting again for the Tuesday procedure.
He had not eaten in 19 hours.
They said he could have a some broth and jello.
Tuesday morning brought another little test of patience. Side note — If you pray for patience, God doesn’t give you patience. He gives you opportunities to exercise patience. That’s not gospel, that’s just me saying be careful about praying for patience.
In a nutshell, they (not us) had some communication breakdowns going on. We arrived just before 6am AS REPEATEDLY INSTRUCTED. At just before 9am, when our doctor was about to go back with someone who was NOT Patrick, I had to get a little feisty on my beloved’s behalf over this incredibly unacceptable confusion and delay. They apologetically explained that nope we didn’t need to be so early and nope he was not going to be the first colonoscopy on the Doctor’s schedule that morning and nope they don’t know why no one called to tell us that. But hey, they gave us $10 to use in the cafeteria and would have validated my parking if I had used the valet. We appreciated the gesture, but talking about free food in the cafeteria wasn’t helping Patrick.
Thirty-six hour mark of no food.
(Because broth and jello do not count)
When it was all finally said and done…FORTY HOURS after our dinner at Dish on Sunday night…Patrick got through two intense procedures in two days and we hit the road to go home. He got food immediately. He even got food to eat while he ordered food. No lie.
And now we are packing to head back down to Houston in the morning for a pretty big day.
Tomorrow, we will meet with Dr. Wang to go over all of the latest results. If everything checks out okay, we will stay for the rest of the week to begin Part Two.
The thing is…even on the tiring days, with long waits and frazzled nerves, we are SO completely grateful for MD Anderson and this amazing clinical trial. Really. We’ve been talking lately about how different things might have been if we hadn’t had access to this particular protocol. It’s been a blessing. We are 100% positive that we are in the right place and getting the right treatment for Mantle Cell Lymphoma.
Please keep us in your prayers this week. The girls are going to be on their own. Again. Thankfully, Isabelle was invited to go on a road trip to visit some colleges with her best friends. She’s very excited and we’re glad she has something fun to do for a few days while we’re away. And of course our family and friends are here to support both girls in our absence. Another enormous blessing.
We might not be back for Easter. BUT, if we’re in Houston on Sunday, it just means we are that much closer to completing Patrick’s treatment. And that’s all that matters.
So, if I don’t see you this week, Happy Easter!!
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CHRIST IS RISEN!
HE IS RISEN INDEED!
ANGIE BURKE 