Saturday morning... 7:44 am
It's early Saturday morning, and we've been up in our household here for at least an hour. It started with a basket full of baby gurgles and happy laughter beside our bed, which triggered the all familiar door squeak of Martha's door handle as she dragged her stuffies and blanket into our room to attempt to worm in between us in our bed and aah, yes, the blissful idea of a Saturday morning sleep in is dashed into pieces. But I must admit, I love sleepy snuggles and soft breathing and a hug from our oldest daughter. And the lovely smiles that are happy that Mom has finally brought a bottle after sleeping mostly through the night. Yes, she's getting a little more reliable as far as sleeping - will go from 10:30/11-anywhere between 4:30-7:30. So not quite the middle of the night, endless exhausting every two hours feeding. And you can tell she's getting fed enough, the rolls are getting bigger, cheeks are filling in and she's so, so busy. Never sits still, always, always has to see what's going on in the world around her, kinda like what she was inside me, never quiet, always twisting and turning. Aah, such life, such energy, it's good to have around us - to remind us that each moment is special and needs to be cherished, even the difficult ones.
But now for updates... to be honest, I'm not really sure how to summarize this past week and a half...except to say...waiting. Back to my favourite pastime to be sure. NOT! I pray daily for patience, for calm, for anxiety to be quelled, suppressed, taken away and yet, it seems so easily taken back...subtly, unexpectedly, not meant to. I read the verses and love to hear their comfort and yet, and yet...Strengthen my feeble knees and weak hands, dear Lord.
So as we mentioned last update, we had been considering treatment options and what would be best after our not so great CT results. After much discussion, research, consulting with educated family and friends and with our oncologist, we have decided to opt to participate in a clinical trial at Sunnybrook Hospital in Toronto. This took a lot of thought and prayer and tears as we weighed options. It comes down to this - our second line of treatment for this cancer would be a chemo regimen called FOLFIRI (acronyms for Folinic Acid, Fluorouracil and Irinotecan). As you might remember, chemo regimens consist of a variety of drugs put together to allow them to cooperate in attacking the cancer without super toxic levels of each drug in particular. This would be a chemo we would receive at the Juravinski Hospital here in Hamilton.
We also questioned our oncologist if there were any other options as we had heard of the option of clinical trials and asked whether there would be anything that applied to us. He did a quick search and almost immediately an option came up at Sunnybrook and St Michael's Hospitals in Toronto for a Phase 3 trial (meaning that the drug has gone through two other phases of testing already to make sure it's safe for people - and now they're testing to see whether the drug adds any benefit to the established chemo regimen of FOLFIRI) We've done quite a bit of reading about this drug, which is a cancer stem cell inhibitor - so it endeavors to stop the baby cancer cells from maturing and growing (i sure hope I have that all right - it's pretty technical and I'm not!) We would be randomized to either getting the drug or not - a 50/50 chance. Kinda like a roll up the rim to win, essentially. Which has it's own elements of anxiety - sure hoping that we actually get the drug but no one will know until we start the process.
We also questioned our oncologist if there were any other options as we had heard of the option of clinical trials and asked whether there would be anything that applied to us. He did a quick search and almost immediately an option came up at Sunnybrook and St Michael's Hospitals in Toronto for a Phase 3 trial (meaning that the drug has gone through two other phases of testing already to make sure it's safe for people - and now they're testing to see whether the drug adds any benefit to the established chemo regimen of FOLFIRI) We've done quite a bit of reading about this drug, which is a cancer stem cell inhibitor - so it endeavors to stop the baby cancer cells from maturing and growing (i sure hope I have that all right - it's pretty technical and I'm not!) We would be randomized to either getting the drug or not - a 50/50 chance. Kinda like a roll up the rim to win, essentially. Which has it's own elements of anxiety - sure hoping that we actually get the drug but no one will know until we start the process.
So after a week and a half of waiting at home for a phone call from Toronto, not daring to leave, jumping at every ring of the phone and grumbling under my breath when it would turn out to be a survey or a person trying to sell me duct cleaning services, boy, did they get a piece of my mind! Finally, our nurse at the Cancer Clinic found me a number and contact person at Sunnybrook and we immediately gave her a call and left a message - so relieved to have an actual person to contact. She called us back that afternoon and answered a raft of our questions, which brought on a flurry of tears as we finally were getting some answers... what a relief. And even more of a relief to get another phone call an hour later to say that we could meet the head of the clinical trial in Toronto on Friday morning. Wow, what a difference a personal call and some tears possibly made? I'm not sure, but I'm sure thankful that it got the wheels of the process oiled and rolling.
Yesterday morning, it was up early, farming the kids out and on our way to North York to a completely different world, where no one would know us, where we know no one, where it would be all unfamiliar. Thankfully, the drive was easy and uneventful, the cancer clinic was easy to find and was quite welcoming and we clicked immediately with the new oncologist (who even knows one of the doctors that I work with in hematology - nice to have a little connection!) He laid out all the ins and outs of the trial, including that he understood that if we would be randomized to the arm of the trial that did not include the drug, that he would totally understand if we came back to Hamilton to receive the FOLFIRI, since it would be kinda silly to drive all the way to Toronto just to receive the same chemo as we would receive in Hamilton.
We believe that it is worth the risk and wait to see if we might receive this new drug - only because early reports do seem to indicate that the trial drug does have some very positive results and since I'm feeling rather well at present, it's worth the hassle and difficulty of travelling to Toronto for a possible added benefit. So we are now waiting for an updated CT scan (needs to be done within 21 days of starting the trial and of course, the last scan was done longer ago than that). We also need to have an ECG, some study bloodwork and then after all the results of that are in, we will meet with the doctor again and find out if we have been chosen. I know that there is a lot of emotional ups and downs, especially if we don't get chosen, but we feel it is worth the chance and we will continue to pray for calm, for patience and especially for the Lord's will to be done as we continue to battle this inner monster.
We believe that it is worth the risk and wait to see if we might receive this new drug - only because early reports do seem to indicate that the trial drug does have some very positive results and since I'm feeling rather well at present, it's worth the hassle and difficulty of travelling to Toronto for a possible added benefit. So we are now waiting for an updated CT scan (needs to be done within 21 days of starting the trial and of course, the last scan was done longer ago than that). We also need to have an ECG, some study bloodwork and then after all the results of that are in, we will meet with the doctor again and find out if we have been chosen. I know that there is a lot of emotional ups and downs, especially if we don't get chosen, but we feel it is worth the chance and we will continue to pray for calm, for patience and especially for the Lord's will to be done as we continue to battle this inner monster.
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