Sophie's World

10:12 am Just a quick post so that there is something on this site--Susan's mom pointed out that when the new month rolled over, all our content rolled over into the archives as well and she was left staring at a blank page. Not that our life has been a blank page!

Sophie did well last week with her treatment. Because the veins in her hand have not been holding up well lately, we were going to try the chemotherapy injection and blood draw in her foot. Sophie seemed very squeamish about that the whole time, and when it came time to draw the blood, was reverting to her old kicking and screaming self. Unfortunately, after all that drama, there was no blood and there was to be no chemotherapy injection. Sophie kept crying over and over again, "I want the blood to come out! I want the blood to come out! I want the blood to come out!" But it never did.

Dr. Gold came and took a look at Sophie's veins on her feet as well as her hands, and we put the numbing cream on both feet and both hands. We also put warming pads (warm, wet washcloths) on her hands to try and "plump up" her veins. Everyone agreed that we would try the hands first, and on the very first try (with no kicking and screaming), we had a successful "stick." Everyone was happy.

Sophie managed to do very well on steroids last week. She turned into an eating machine, but she was mostly cheerful. She and Elisabeth got into it a couple of times--that's normal, but it gets magnified when Sophie is on steroids (I think Sophie's mood affects Elisabeth's as well). We have two more clinic visits for chemotherapy and two more 5-day steroid treatments.

A fellow South Africa pilgrim (hi, Nora!) pointed out after the monster list of side-effects I posted last time that although what Sophie is going through (what we are all going through) is a big thing, God is even bigger. Thanks for the reminder. I have noticed that we get so bogged down in the details of Sophie's treatment some times that we lose sight of the bigger picture, maybe out of necessity. It's nice to know that so many of you continue to keep up with us and continue to encourage us and pray for us--we certainly need it still!

Posted by Randall at 10:11 AM | Permalink

I thought I would write a quick post about how wonderful and thoughtful my husband is--he came up with a wonderful surprise for my birthday (yesterday)!

Randall had been telling me for days that he had something special planned. All he would tell me is that we were doing something that could only be done in the triangle (Raleigh/Durham/Chapel Hill), and that his later than anticipated arrival (Elisabeth's awards ceremony was that afternoon) meant that we might have to start that day and finish another day.

So, he picked me up from work at 3:30, and he said he really wasn't sure we would be able to finish that day because we would have to be "out by 5:00." Interesting. We drove up to Durham, and then he told me to close my eyes and kept saying things like "I hope I can find it." When I opened my eyes, I saw a sign for the Tuba Exchange! Some of you know, but some of you don't, that I am a tuba player. I started in 7th grade and played through high school, quit in college, and started up again in grad school. I played actively when we lived in Colorado, but after we moved to NM in 1997, I didn't play because I didn't own a tuba (all the other groups I played in had a tuba I could borrow). We've talked for years about buying one, but it seemed so impossible (my dream tuba costs about $10,000).

This place was amazing. It's the only place in the country that specializes in tubas, and they ship instruments everywhere. Being surrounded by hundreds of tubas was really something. If you go to the web site (http://www.tubaexchange.com/) and click on Historic Collection at the very top, you can get a feel for it.

My lips haven't touched a tuba since I was pregnant with Elisabeth 9 years ago, so I was kind of nervous about trying them out, but I started with a used instrument (http://www.tubaexchange.com/used-product-detail.asp?PID=Sear/Cerveny681). That was fine, but I wanted to try more. We walked over to the other building where he keeps the new instruments, and he talked through the options. I had always wanted a Miraphone, but Vince was really pushing the St. Petersburg line, which he said was much better and quite a lot less expensive. He had a brand-new shipment of 88 St. Petersburgs he was very excited about. I played it, and the difference between that and the used one I had tried was remarkable. I decided that was the one I wanted, so we bought it on the spot! It's the one featured on the top level of the home page (or see http://www.tubaexchange.com/product-detail.asp?PID=STP-202N). It has a nickel finish, so it's silver colored instead of brass, and it's beautiful! It came with a free "gig bag" (for all the many gigs I'll be doing--ha!), and a free mouthpiece (which is good, since I don't have a clue where my old one is). I don't know how much I'll get a chance to play before we move to NM, but I'm really hoping I can get connected to a community band or orchestra before too long.

After shopping, we went to dinner at Brasa (a Brailiam restaurant where they bring the meat out on skewers) and then window-shopped for a while.

I had a wonderful day yesterday. Between Randall's attention, and the surprise lunch my co-workers threw for me, I felt so special! It's a big birthday (40), so it's nice to have the celebrations be extra-nice.

Posted by Susan at 11:03 AM | Permalink | Comments (2)

9:15 AM: Wondering where we've been lately? Disney World! We took advantage of spring break at Elisabeth's school to take a trip to Orlando. Randall's mom (Karin) met us there, and we spent the week together. We rented a very nice house (maybe too nice, given how little time we spent there!) and a car, and we really got our money's worth out of that trip. We arrived on Monday, spent Tuesday at Epcot (it rained), Wednesday at Animal Kingdom (it was blazing hot), Thursday at Universal's Islands of Adventure (with a slight detour to the emergency room at the Arnold Palmer Children's Hospital--more on that below), and Friday at Magic Kingdom before heading home on Saturday. When we were there back in November, it was off-season, and the parks closed quite early. This time, we took advantage of later closings and stayed in the parks much longer. On Friday, we actually left early for some resting time at the house, had dinner with a friend and her husband (Hi Heidi and Bill!), and went back to Magic Kingdom between 9 and 11.

Trip to the ER: Before we left, Sophie had a terrible cough, and we called UNC about whether we needed to do something about it (other than canceling our trip!). The doctor called in a prescription for a mega-dose of steroids (lucky us), because the cough was sounding croupy. On Thursday morning, Sophie woke up with a fever, and when we called UNC, they wanted us to take her in to an ER to be checked and start some antibiotics. I was really worried that the steroids would have suppressed her immune system and we would get admitted, but her counts were fine, and we were out of there before noon (the fastest ER visit ever--I would highly recommend that hospital). Randall came and picked us up, and we joined them to spend the rest of the day at Universal. Sophie was fine after that.

We're all back to school and work--the adjustment to reality hasn't been easy. For those of you wondering, Randall still hasn't heard about where in New Mexico (or Texas?) we'll be going. We're really eager to find out so we can start planning the move.

Posted by Susan at 09:16 AM | Permalink | Comments (2)

4:09 PM One down, one to go. That's where we are. Sophie went to Chapel Hill today for her next-to-last treatment. She started steroids yesterday and will finish this weekend, so we're going to have a fun-filled couple of days! It's very exciting to be nearing the end of this part of our journey. Susan talked with the doctors about transitioning to follow-up care at another facility near my next appointment in the New Mexico Conference (we know where but we're not yet at liberty to say where--stay tuned). The doctors made a point of telling Susan, "Of course, you realize, we're really ticked at you for leaving!" They really genuinely care for us and for Sophie. Dr. Gold has now told both Susan and me that if we have any questions about anything that we are free to call, even if it's ten years from now. It's a very special kind of care that we've received.

Sophie's visit to the clinic seemed to go well (from what I hear). Of course, there was some anxiety about getting "poked," but it only took one try and everything went smoothly from then on out. We got a better sense of how treatment will wrap up and how follow-up is going to work, so we feel good about that. Dr. Gold is even going to do some research on our best options in the area where we'll be moving. It's nice that he's going out of his way to help us with that transition.

Sophie was slated for another treatment in May (spinal tap and dose of vincristine), and then for a last check of her spinal fluid and bone marrow the first week in June. Dr. Gold recommended, however, that given Sophie's anxiety over the "dizzy medicine" that we might be able to double up and just do one visit that first week in June. This way, she gets sedation in the clinic and while she's sedated she'll get the spinal tap, dose of vincristine, and bone marrow check--otherwise we'd be looking at two sedation events within two weeks. Sophie will continue to take oral chemotherapy at home until May 31. After that date, she'll take her antibiotic for three months. It may take up to one full year before her immune system is back on track, so we'll need to continue to take care and be vigilant about fevers and the like. She will go in once per month for a blood draw and physical exam that first year.

Can you tell how calm and reassuring this transition is, compared to what we've been through? I hope so. I knew we'd be excited about ending treatment (and, of course, there is some anxiety about quitting what's made her healthy the past two and a half years), but it feels really, really good!

Posted by Randall at 04:09 PM | Permalink | Comments (2)

1:40 pm We have some troubling news to post. Susan was feeling some chest pain last night and although it sort of came and went throughout the night, she felt bad enough to go to Urgent Care this morning up in Durham (she went ahead and drove in to work first). The doctor at urgent care recommended that she go to the ER, which Susan did. Of course, the first thing you think of with chest pain is a heart attack, but, thankfully, that has turned out to not be the case. What *has* been the case, at least the last I have heard (I'm at home today) is a possible pulmonary embolism. I am in shock, to say the least, and I don't know what more to say. Please remember Susan and all of us in your prayers throughout the day. I'll try and post as soon as I hear anything newsworthy.

Posted by Randall at 01:39 PM | Permalink | Comments (1)

7:02 pm After spending all day at the hospital, and assuming she would be admitted, Susan called a couple of hours ago to tell me that she was going to be discharged (I was on my way to Chapel Hill with an overnight bag assuming she would be admitted). The good news is that she does not have a pulmonary embolism (a blood clot in her lung). She does appear to have "pleuritic pain" or pleurisy, which is an inflammation of the lining around the lungs. That would explain the pain with coughing and with breathing. I'm sure she has way more information that I have (I only know what she told me on the phone and what I've been able to glean from the internet). It sounds as if the plan for right now is to send her home with some heavy duty Motrin and for her to follow up with another doctor some time soon. Thanks to everyone for their prayers. It's been a weird, weird day, as you might imagine.

Posted by Randall at 07:01 PM | Permalink | Comments (2)