If you're still with me, here's where the precise chronology begins to break down. At this point in the story, I am tired, I am scared, and my sense of time is completely skewed. I mean, I actually called my friend's house, got her husband, and only realized later that she was at book club. Come on! I've only missed two book clubs in seven years--suddenly I can't remember what night it's on? (The truth is, I knew what night book club was on, I just didn't know what night I was on.
Things that happened on Wednesday afternoon/Thursday/Friday, in no particular order except how my mind is happening to remember them right now:
-We meet Dr. Zeinab Afify, Jacob's oncologist. She's wonderful. We feel very confident in her hands. We also meet Dr. Lucy, her resident. One (of many) nice things about a children's hospital--you sometimes get to call the doctors by their first names.
-Jacob has a second cat scan, an MRI, and a cardiac echo. The echo takes a baseline reading of his heart to see if there's any effect on it during the course of treatment. It involves lying on his side and watching TV. Not too taxing. The cat scan is annoying mostly because they wanted to check his liver/stomach area, so he had to drink an enormous amount of contrast dye. It's nasty. He managed it. I was very proud. The MRI involved more holding still while watching TV. At this point, I'm thinking how lucky we are to have an 11-year-old and not a 4-year-old in this position. Can you imagine the logistics of trying to keep a toddler or preschooler still? Not to mention the difficulty of them not really understanding what's happening and why certain things need to be done.
-Chris spends Wednesday night at the hospital with Jake and sends me home to get more than 45 minutes of sleep. (And to shower and change my clothes--no one is happy about the way I look.) The worst part of being the one to go home isn't leaving Jake--it's being the one who has to tell our 3 other children what's wrong. Emma (9) bursts into tears the moment I say "cancer". Spencer (6) has a lot of questions like "What is a vein?" But it's Matt I'm really worried about. At 14 and naturally reserved like his father, he says nothing while I'm talking, just stares at the floor. After we're finished, I get the younger ones into showers and go downstairs to find Matt. Alone, he manages to let his emotions out. It's good for him, but excruciating for me. I told them that the hardest part of the coming months would be watching Jake and not being able to take it for him. We can love him and support him and help him--but he's the one who has to do it. And as a mother, the second hardest thing is that I can't make my other children not go through this as well. They're going to hurt. They're going to worry. I wish they could stay sheltered. But they can't. So all we can do is stick together.
-I feel much better after 7 hours of sleep and a shower. I get the kids off to school (first day back after Christmas), talk briefly to Jacob's teacher and principal, then head up to the hospital. Jacob has--wait a minute, I think I was ahead of myself earlier--Jacob has the MRI this morning. We know that he'll go into surgery sometime today to have his porta-cath implanted in his chest (providing easy IV access for the months of infusions to follow). We don't expect that until late afternoon since he's not on anyone's schedule. But surprise! They take him within a half hour after his MRI. He's most nervous about being put to sleep--what will it be like, will he remember anything, will it hurt. But he holds up well and we send him off with a smile hiding our own nervous hearts.
-There's a slight mix-up in what needs to be done when, but it all works out. By the time Jacob is brought back up to his room, he has a porta-cath and he's also had a spinal tap and a bone marrow biopsy while he was under. He's a little sore when he wakes up, and very groggy. But his brother and best friends come up to visit and that perks him up.
-By Friday at noon, we've had the results of all the tests except the bone marrow biopsy. Every single one is clear, meaning there's been no spread of the cancer. It's the very best thing we could hear. It's also not near his brain and, although it's pressing on the optic nerve which is causing the swelling of his eye, it hasn't invaded the nerve and his eye should be fine. (We spent two hours Friday morning in the opthamology clinic and at the Moran Eye Center having tests that will be a baseline for his eyesight as the treatment progresses.)
-Chemotherapy begins late Friday afternoon. They are very agressive about treating nausea in children, so they give him anti-nausea drugs before they even begin the treatment. Chris stays this night (I stayed Thursday) and it's a bit of rough night. There will be a learning curve for how his body reacts and an adjustment of medications as we learn. He has to get up every two hours to use the bathroom (one of the drugs is very hard on the bladder), so he's tired and he does get nauseous. He throws up once at 4:00 a.m. When I get back to the hospital the next morning, he's sleeping from a combination of Benadryl and Phenargan. We're released in the early afternoon and take him home. He has dry heaves once on the way home, but I think that was mostly car sickness taking advantage of his delicate state.
-Jake's friends have decorated the house for him, and also his sister's room. (We've put Emma in the bunk beds with Spencer and moved Jacob upstairs from the basement for now--I don't want him that far from me.) He mostly sleeps the rest of that day and that night. He takes one dose of Zofran for the nausea, but doesn't touch if after that. By Sunday night, he's beginning to be himself again.
-Monday and today (Tuesday) have been good days--up and about, watching TV, on the computer. I took him to school today for just 20 minutes to see his classmates (who cheered when he walked in unexpectedly) and to talk a little about what he's going through and what to expect.
And that's my next post: What Happens Now