Day +1130: All is well
Didn't realize it had been so long since the last update. I had promised to update quickly with the results of Mina's appointments. Oops! I guess everyone should know that we're at the point now where no news is good news. Mina's appointments were really uneventful. I took her to her pulmonary function test and echocardiogram, so I got to see what a big girl she is these days. The pulmonary function test is where they test her lung capacity. The radiation she had can really be damaging to the lungs, and cancer patients can have scar tissue in the lungs that affects their functioning. Chronic graft-vs.-host disease can also show up in the lungs, so she's had a PFT every year since 2005. They gave her a tube to blow on and asked her to blow out candles on the computer screen three times. She enjoyed the test and her lung function was just fine. Her echocardiogram went just fine as well. She laid very patiently while they took sonograms of her heart for almost an hour. No evidence of any damage at this point. Keri took Mina to her 3-year appointment with Dr. Cowan of the bone marrow transplant team. Again, no news is good news. They are thrilled with her progress, and she doesn't have to go back for a full year! Dr. Loh of oncology wants to see her at the end of the summer, but this is still a huge milestone that she's on to yearly appointments. The BMT team is putting together a late effects follow-up team, so we will probably become involved with that at some point.
The PFT was on 7 Long at UCSF, which is the same floor as pediatric oncology, and since we had had 45 minutes to kill before her echocardiogram, we stopped by the nurses' station to say hello. Were they ever thrilled! There was a big commotion on the floor and everyone came around to get a good look. We've kind of made ourselves scarce even though we live just a few blocks from the hospital. Just haven't been that motivated to spend a bunch of time on the floor, I guess. Some of the nurses had seen Mina across the street at the clinic, or at the picnic last year. But some of them hadn't seen her since she was inpatient with no hair and big, chubby cheeks from the steroids. That was a lot of fun. Amber was there, and it's always great to see her. Isaac was with us and the nurses loved seeing him too. They used to carry him around and bring him out to the nurses' station when he was six months old and he would sit and hang out there with them.
Grandma Lyn and her sister Great Aunt Karen were here a couple of weeks ago. They had lots of fun with the kids, and it was great to see them. Karen came down right when Mina was just starting the pre-transplant chemo and radiation conditioning regimen, and she, Lyn and Keri scrubbed the apartment until it was spotless. I remember that Karen pulled out the stove and the fridge and scrubbed off decades of grease and grime. Whatever they did, it must have worked because Mina never got a fungal infection. They slept in the queen bed in the kids' room, the kids slept with Keri in the king bed, and I was back on the couch. That's where I slept for a year after we began to get concerned about fumes from the PVCs in the aerobed, and Mina used to come out every morning at 5 AM, climb into bed with me, and say "Daddy, can tell me a sto-wee?" One day while they were here, Mina came out, climbed into bed with me and said, "Now we're back to normal!"
The kids enjoyed Mother's Day -- we got up early and walked down to the corner store while Keri was still sleeping and bought her flowers. When we got back the kids drew cars for her, then we made a relatively special breakfast of waffles with strawberries and whipped cream. The day must have made a big impression, because the next day, Mina wondered when it was going to be Brother's Day. A couple of days later, she decided that day was Brother's Day, so she made him a card first thing in the morning and all day long she kept telling him it was Brother's Day. Eventually Isaac began wondering why we weren't all making a big fuss about him on Brother's Day.
Keri is working on a book review for an academic journal, and needed most of Memorial Day weekend to do her work. Melissa offered the use of her house while their family was in Palm Springs, so Keri went up there from Saturday morning to Monday morning. The kids and I had a fun weekend on our own. Saturday I took them to the Exploratorium, which is a science museum for kids. They had a ball, and really behaved well especially compared to some of the kids there. Sunday we went to a concert by the Golden Gate Park Band, which is an old-fashioned band of brass and woodwinds. They were playing "patriotic tunes" for Memorial Day, which meant some military-themed songs in addition to Gerschwin, Cohan, etc. Isaac seemed to really enjoy it. Mina fell asleep on my lap for about 45 minutes. She was very tired, but I was still really surprised to see she was actually sleeping. It may be the last time that happens! One of the fun things about it was that, since Keri took the car, we used public transport to get around the city. The kids loved taking the bus. It gives them a chance to be social in addition to the fun of being on a big moving vehicle.
I made Keri bring the car back Monday morning so I could take Isaac to the Hiller avaiation museum. We dropped Mina at Anika's first, then headed down the Peninsula to San Carlos. It's a neat place. I enjoyed the flight simulators and Isaac loved sitting in the cockpit of one of the Blue Angels planes. But the biggest thrill was the 747 nose cone section they had resting on the tarmac outside. The cockpit was intact, and they had refurbished eight seats in the upstairs cabin and about 20 in the downstairs cabin. Isaac got to sit in the pilot's seat for a few minutes while I saw in the co-pilots' seat, but what he liked best was playing "flight attendant". He would go sit in the jump seat, then I would "ring" the call button. He would come and ask what I wanted, I'd tell him a black coffee, or an apple juice, he would go and get it for me, he would go and sit down in the jump seat while I "drank" it, then the game would begin all over again. We must have done that for 45 minutes. Several families came and went while we were playing flight attendant. As we were leaving, Isaac said "What if we could sleep here?" And the best thing of all is that it was not at all crowded, which is really unusual for the Bay Area.
The PFT was on 7 Long at UCSF, which is the same floor as pediatric oncology, and since we had had 45 minutes to kill before her echocardiogram, we stopped by the nurses' station to say hello. Were they ever thrilled! There was a big commotion on the floor and everyone came around to get a good look. We've kind of made ourselves scarce even though we live just a few blocks from the hospital. Just haven't been that motivated to spend a bunch of time on the floor, I guess. Some of the nurses had seen Mina across the street at the clinic, or at the picnic last year. But some of them hadn't seen her since she was inpatient with no hair and big, chubby cheeks from the steroids. That was a lot of fun. Amber was there, and it's always great to see her. Isaac was with us and the nurses loved seeing him too. They used to carry him around and bring him out to the nurses' station when he was six months old and he would sit and hang out there with them.
Grandma Lyn and her sister Great Aunt Karen were here a couple of weeks ago. They had lots of fun with the kids, and it was great to see them. Karen came down right when Mina was just starting the pre-transplant chemo and radiation conditioning regimen, and she, Lyn and Keri scrubbed the apartment until it was spotless. I remember that Karen pulled out the stove and the fridge and scrubbed off decades of grease and grime. Whatever they did, it must have worked because Mina never got a fungal infection. They slept in the queen bed in the kids' room, the kids slept with Keri in the king bed, and I was back on the couch. That's where I slept for a year after we began to get concerned about fumes from the PVCs in the aerobed, and Mina used to come out every morning at 5 AM, climb into bed with me, and say "Daddy, can tell me a sto-wee?" One day while they were here, Mina came out, climbed into bed with me and said, "Now we're back to normal!"
The kids enjoyed Mother's Day -- we got up early and walked down to the corner store while Keri was still sleeping and bought her flowers. When we got back the kids drew cars for her, then we made a relatively special breakfast of waffles with strawberries and whipped cream. The day must have made a big impression, because the next day, Mina wondered when it was going to be Brother's Day. A couple of days later, she decided that day was Brother's Day, so she made him a card first thing in the morning and all day long she kept telling him it was Brother's Day. Eventually Isaac began wondering why we weren't all making a big fuss about him on Brother's Day.
Keri is working on a book review for an academic journal, and needed most of Memorial Day weekend to do her work. Melissa offered the use of her house while their family was in Palm Springs, so Keri went up there from Saturday morning to Monday morning. The kids and I had a fun weekend on our own. Saturday I took them to the Exploratorium, which is a science museum for kids. They had a ball, and really behaved well especially compared to some of the kids there. Sunday we went to a concert by the Golden Gate Park Band, which is an old-fashioned band of brass and woodwinds. They were playing "patriotic tunes" for Memorial Day, which meant some military-themed songs in addition to Gerschwin, Cohan, etc. Isaac seemed to really enjoy it. Mina fell asleep on my lap for about 45 minutes. She was very tired, but I was still really surprised to see she was actually sleeping. It may be the last time that happens! One of the fun things about it was that, since Keri took the car, we used public transport to get around the city. The kids loved taking the bus. It gives them a chance to be social in addition to the fun of being on a big moving vehicle.
I made Keri bring the car back Monday morning so I could take Isaac to the Hiller avaiation museum. We dropped Mina at Anika's first, then headed down the Peninsula to San Carlos. It's a neat place. I enjoyed the flight simulators and Isaac loved sitting in the cockpit of one of the Blue Angels planes. But the biggest thrill was the 747 nose cone section they had resting on the tarmac outside. The cockpit was intact, and they had refurbished eight seats in the upstairs cabin and about 20 in the downstairs cabin. Isaac got to sit in the pilot's seat for a few minutes while I saw in the co-pilots' seat, but what he liked best was playing "flight attendant". He would go sit in the jump seat, then I would "ring" the call button. He would come and ask what I wanted, I'd tell him a black coffee, or an apple juice, he would go and get it for me, he would go and sit down in the jump seat while I "drank" it, then the game would begin all over again. We must have done that for 45 minutes. Several families came and went while we were playing flight attendant. As we were leaving, Isaac said "What if we could sleep here?" And the best thing of all is that it was not at all crowded, which is really unusual for the Bay Area.
posted by Arne Olson @ 8:41 PM
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