To make a long (long) story short, here's the facebook update I posted from my hospital room on Thursday afternoon:
My MRI is clear! For anyone who was waiting to hear, this is great news. No progression of my MS for four years, thanks to the miracles of modern medicine. I wouldn't recommend a bone marrow transplant for a fun time, but I'm sure grateful i got this second chance at life. After 4 days, 4 doctors' visits, 1 MRI, 1 leukopheresis, 3 blood draws, 4 IVs, and 1 spinal tap, my appointments are done and i don't have to come back to Houston for another year!!! Yay!!
Now for the nitty-gritty details that probably no one really cares about, but I feel compelled to write anyway. :-) There are pictures, too!
Last Saturday evening, my sister Rosalynde and three of her children drove down from St. Louis. It is a long 12 hour drive with a 3, 6, and 8 year old, especially when the portable DVD player broke partway through the drive. But they are good sports and made it here just fine.
On Sunday we went to church. I had to leave partway through with Mosey who had a bad stomach ache. I was very worried it would turn into a stomach virus and wreak havoc with our trip to Houston, but after a few hours he was back to himself. We ate lunch, packed our suitcases, loaded up the car, and headed out to Houston in the midst of a huge downpour.
The drive to Houston was fine, once we were out of the rain. In fact, it was downright beautiful, after all the rain we've had the past few weeks. And having my sister to talk to mostly distracted me from the mounting anxiety I usually feel as I get closer to the city.
We stayed in a Best Western-- actually the same one I stayed at four years ago when I went in to get my central line placed and my first apheresis. What a difference four years makes!
On Monday morning the kids enjoyed their beloved hotel breakfast, and then went swimming for a couple of hours before Rosalynde and I left for MD Anderson. We got a call that Rachel (our little sister) was finally in labor! Happy news for a stressful morning.
I got blood drawn at the fast track lab, and then hung out in the Sun Dial for a couple of hours until my appointment with Dr. Popat. Meanwhile Rosalynde took the kids to a park, then to lunch, and then settled them into our hotel room watching the National Geographic channel before coming to join me.
Everything was fine with my appointments. They got me in to see Dr. Popat as fast as they ever have-- I was done with that appointment in an hour, which is truly a miracle.
MD Anderson is a hard place for me, which makes me feel like a jerk, because I realize how very fortunate I am compared to all the other patients there, especially the ones waiting at the 8th floor fast track lab and the stem cell clinic. That's partly why it's hard for me-- to be so dramatically confronted with the pain and sadness of so many people. Not one of them wants to be there. But everyone was nice, the volunteers in the Sun Dial hospitality room were as nice as ever-- one cute old man in particular was very solicitous of me and got me ice water and a pillow so I could lay back and rest on the chair I was on.
Anyway, after seeing Dr. Popat and checking in at the apheresis clinic to get checked out for my leukopheresis on Wednesday, we went back to the hotel and picked up the kids and went to the water wall. That is one of my favorite places in Houston.
Of course, with all the rain we've had, the big grassy area in front of the water wall was muddy, and before long 3 out of the 6 children were pretty well covered in mud. Oh well. :-)
Here are some pictures. Some kids were less excited than others to pose for pictures. :-)
After rinsing off as best we could using water from the fountain, we headed over to the Galleria for dinner at the food court, and then went back to the hotel.
Tuesday morning I was the most nervous. I had my neurological workup with Dr. Hutton at 9:30. Rosalynde took me over there and helped me calm down so my heart rate wasn't through the roof when the nurse took my vitals. :-) Everything went fine, though. The neurological testing they did (25 minute timed walking test, math/memory test, dexterity peg test, and then the regular neurological physical exam) went smoothly, and apparently showed no change from a year ago. They drew about 20 vials of blood for who knows what mysterious research purposes, and then I was free to go. There is no logical reason for me to get so anxious and nervous for these appointments! I know that, but I can't control it. The only snag was my 100 meter walking test. Dr. Hutton has let me video this at home for the last couple of years. So last Thursday night I set up my video camera and set off on my 10 lengths of the family room and hallway. But on my last lap, I lost my balance and had to lean up against the wall, which would technically cut off my distance at 77 meters. However, this has happened before, and I just waited a couple of days and tried again with no problem. The trouble this year was that I didn't get a chance to try again before we had to go to Houston. I hoped Dr. Hutton would just give me a pass, but I knew he wouldn't. However, he is letting me try again at home sometime over the next month and send him the video via email so I don't have to drive out there again. Thank goodness.
After my neuro appointments, we went back to the hotel and picked up the kids. We stopped at Krogers to pick up some groceries for lunch, and then drove down to the Houston Museum of Natural Science. We had a picnic in front of the museum, and then spent the rest of the afternoon enjoying the museum. It is a great museum! We watched the huge Foucault's Pendulum knock over a few pegs, went through the dinosaur hall, the energy hall (which was really cool-- it was all about oil drills and wells and refineries and I learned so much!), and the gem hall (which was especially exciting when the power for the entire museum went out while we were in the precious gems vault and left in the pitch black until the emergency generators kicked in). Then we went down to the basement to see the real Egyptian mummy (which was pretty thrilling for my boys who have been on a Rick Riordan kick this summer). Before we left the museum (just before closing), Jack and Brigham took a ride on the gyro-something-or-other which looked terrifying, but was apparently fun for them. It's this giant gyroscope in which the boys were strapped in and then sent on a whirling and tumbling ride before finally coming to a stop. After watching a few of these rides, none of the other kids were too keen on giving it a go. :-)
Here are some pictures.
After the museum, Rosalynde dropped me off at Texas Children's for my MRI and then took the boys home to the hotel for pizza and a movie. My MRI went just fine, aside from the nurse messing up on my IV and having to poke me several times in the hand. Ouch. I'm a pro when it comes to needle sticks, but I still do hate getting IVs placed in my hands. It just hurts. But the MRI was fine-- just over an hour this time, so not too bad. I got to watch the first half of "Enchanted" on the super-cool movie goggles. Then I was done and Rosalynde came to pick me up and I had another appointment checked off my list!
Wednesday morning was my leukopheresis at MD Anderson. Rosalynde dropped me off at 8:30, but in more typical MD Anderson fashion (at least on the 8th floor of the main building), it was more than an hour before the nurse was ready to get me all hooked up. Rosalynde got the kids settled at the hotel and then came and sat with me through most of the procedure. In the leukopheresis, they put IV's in both my elbows, drawing blood out from one arm, circulating it through a big extraction machine where the stem cells are filtered out, before going back into my other arm. They had to circulate my blood volume only one time, so I was hooked up to the machine for a little over an hour-- not enough time to get bone-chilled-cold like I did when they did the stem cell extraction before my transplant. The worst thing about it was the giant needles in my arms-- I couldn't bend my arms at all lest the needle puncture through my vein (makes me shiver to think about it), and by the end of the procedure my arms were killing me. But again, conversation with my sister made it all go so much faster than it would otherwise have. :-)
After that, we left MD Anderson for the last time this year (yay!), and headed back to the hotel to pick up the kids and drive over to the Houston Space Center. This ended up being the highlight of the trip for my boys, and it was really, really cool. I had been one other time-- about a million years ago when I was 17 and my family drove out to Houston to drop me off at Rice University for my freshman year. It was pretty cool coming back again, this time with my own children. Joseph loved it, especially the tour of Mission Control. The Space Center has lots of great exhibits and films and presentations. The kids all got to see moon rocks and walk through a mock-up space shuttle and ride in a flight simulator. The flight simulator was a bit too realistic for Mosey who kind of freaked out when it turned upside down the first time. Poor kid was pretty upset at the end of the ride. Happily the other kids thought it was great. There were TV screens showing the people inside the simulators, and it was really fun to watch Joseph and Jack and Brigham pretty much having the time of their lives. :-) We stayed until the very bitter end (I love feeling like we got our money's worth) before heading out by way of the gift shop where Mosey relieved himself of some of the money burning a hole in his pocket by buying a model Saturn V rocket which he has been playing with nonstop ever since, so I guess it was $3.50 well spent.
Here are some pictures:
Here are the kids on the tram tour to see Mission Control and Saturn V.
Rosalynde took the other kids in the second car with her. Jack and Joseph were pretty inseparable this trip. :-)
The whole gang in front of Saturn V. It is so unbelievably HUGE.
After our day at the Space Center, we drove back toward the medical center, stopped by Taco Cabana for fajitas and then went back to the hotel to eat and watch Star Trek. I was so tired, but it was a fun day.
Thursday morning Rosalynde and her kids headed back up to St. Louis. We went down to the lobby for one final hotel breakfast together before Rosalynde loaded up her car, strapped in her kids, and braved the drive back home. Jack and Elena were going on a Welch family church history tour the very next day, so Rosalynde HAD to get back to St. Louis that night. I know all the kids would have loved one more day together, but it won't be long before they see each other at Cousin's Camp at my mom's house.
Her drive back home ended up being rather grueling as her GPS took her a different route in which they got caught in a THREE HOUR traffic jam when the interstate was shut down in Arkansas before they got to the Missouri border. They left at 8:00 AM and didn't get back until 1:00 in the morning. They did so well, though-- those kids are all super-heroes and my sister is a saint.
As for us, after breakfast we went back up to our room, got all packed up, and then I left them in the hotel room and wheeled myself down the street to the Baylor Clinic (it was so lucky-- our hotel room was right next door) for my lumbar puncture. I got there at 9:30 for a supposedly 10:00 procedure, but they didn't get me into the room until more like 11:00. I had been hoping I'd be done by 12:00, so I could get back to the hotel room and check-out, but that was not to be.
The lumbar puncture was fine. It's not the most comfortable thing in the world, but the doctor did a great job and the headache wasn't too bad. They are super-strict though, and made me stay lying flat for TWO HOURS after the procedure. That's a long time. And I have to say, it's a pretty awful feeling to be laying on a hospital bed, being wheeled out to recovery for a mandatory 2 hour period, and to suddenly realize that you have to pee. :-) Thankfully, I had a nurse who took pity on me and let me up into my wheelchair to use the bathroom after only 20 minutes.
The very best part of the day came when Susan, Dr. Hutton's research nurse, came to pick up the vials of spinal fluid. She came bearing excellent news of my MRI-- no changes from last year! I had been so nervous all morning long-- not because of the spinal tap, but because I knew I'd be getting the results of my MRI (Susan told me she'd have them by Thursday when I talked to her at my Tuesday neuro appointment). My heart was going a hundred miles an hour when I heard her come into the room. But it was blessedly good news, and even more blessedly, I don't have to go through the torture of waiting for days for the phone call from the nurse telling me my results. As soon as she left I was on the phone to Ben and my mom to tell them the good news. I felt like a thousand pounds had lifted from my shoulders.
Meanwhile, my friend Stephanie arrived from Austin and picked up my boys from the hotel. She took them to lunch and to Half-Price Books (my boys love and adore Stephanie because she always treats them to something special), and then came back to Baylor to pick me up. The clinic would not let me leave without a driver coming to get me, and in fact they were pretty annoyed with me that I hadn't brought her with me to the appointment. That seems crazy to me-- she was supposed to sit there for four and a half hours in a hospital just so she could drive me home? The nurse was very stern, lecturing me that I really should have brought my driver to the clinic WITH me, and she'd have to talk to the radiologist to see if she would go ahead with the procedure or make me reschedule. Whatever. The first spinal tap I ever had was just in Dr. Hutton's office-- I sat up, leaning against a pillow, he put the needle in, got the fluid, I lay back down for 15 minutes, and then walked out of the doctor's office and drove myself home. So it seemed like all the precautions here were a bit of an overkill. But I was pretty sore afterward, and it was nice not to have to drive home myself, and even nicer because I got to talk to my friend all the way back home.
Our drive home was uneventful except for one quick backtrack to the hotel to pick up my crutches that had accidentally been left in our room (thankfully we hadn't even gotten on the freeway before we realized they were missing). On our way out of Houston we stopped at Sonic for a celebratory cream slush, and pulled in front of our house at around 6:45 PM. I was HOME! No more Houston for another year!
2 comments:
Im so glad that it went well and that Rosalynde could be there with you!
Oh, and I'd say your pictures are still really great! :)
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