|SATURDAY, MAY 10, 1997|
ASHLEY IRC CHANNEL
Ashley has a cousin, Dustin, who has set up a chat channel for Ashley on DALnet (irc.dal.net:port 7000). The channel is called #AshleyO'Rear (with no space between first and last names). You will need IRC (Internet Relay Chat) software in order to access this feature. I've never gotten into "chatting" online, so I'm not going to be a great source of information for other "newbies" to IRC. However, Dustin suggests a program called mIRC, which you can download from http://www.hotfiles.com/index.html. Just type IRC into the search box (you'll have to scroll down the page to find the search box), and it will bring up a list of IRC software that can be downloaded. mIRC will be one of the items listed.
Ashley and I are going to figure out a time when she will feel like sitting in front of the computer and "chatting" with anyone who wants to join us on the #AshleyO'Rear chat channel. We will determine a specific day and time when she will be in the chat room, and then I'll let everyone know by posting the information here. What a great idea, Dustin! Thanks for your thoughtfulness.
ANGELS IN NURSES' CLOTHING
Some of God's greatest blessings come in the form of people. People who brighten a room just by entering it. People whose hearts are huge, and whose love spills over into everything they do. People who are masters at giving a word of encouragement or a cheery smile just when you need it most. People who radiate beauty from within. Sheryl, Jillian, and Claire are three such people, and they have been a special blessing in our lives.
Sheryl is a nurse with the cancer program at Children's Medical Center. I never have paid close enough attention to know exactly what her role or position is, but I know she must be someone really important. Every time we have had a question for her, she has been Johnny-on-the-spot with the answer. She was one of the first nurses we began working with when we found out that Ashley had cancer, and she has been kind of our special coordinator for all of the new stuff that we are still trying to get accustomed to in this daily battle against the cancer monster. She has always shown genuine concern not only for Ashley, but for us as well, and maybe even especially for us. She is one of those kinds of people who, after you have met her and spent a little bit of time with her, it just feels like she is an old friend from years ago.
Jillian will always have a very special place in our hearts. She is the nurse at Children's who usually gives Ashley her chemo treatments. She and Ashley have become "big buds". Jillian has a heart as big as Texas and a smile to match. Ashley has learned how to finagle a "prize" out of her every time we go to Children's! She is always very sensitive to how Ashley is feeling, and there have been a couple of times when a soft pat and a few understanding words from Jillian were probably the only thing that could have cheered Ashley up. Jillian is a breath of fresh air in our lives!
Claire is another of Ashley's new favorite people and buddies. She is a nurse at the St. Paul Cancer Center, and has quite often been the one to give Ashley her radiation treatments. It was Claire who caught Ashley when she fainted during her second visit to the radiation clinic. Ashley and Claire hit it off right from the start. Ashley's face really lights up when Nurse Claire comes around the corner. There have been several times when Claire was in a meeting or otherwise detained, and Ashley didn't get to see her. The next time we did see her, Ashley made sure Claire understood that she was supposed to be available when Ashley showed up!
We have seen, and been seen by, lots and lots of doctors and nurses over the last couple of months. They have ALL been wonderful! But the three with whom we have spent the most time are Sheryl, Jillian, and Claire. They have been an absolute Godsend in our lives, and they are a wonderful tribute to their profession. Our lives are richer because we have crossed paths with these angels in nurses' clothing, and for that we give thanks.
ALMOST DONE WITH RADIATION
After yesterday's treatment, we now only have six more radiation treatments left! Yahoo!! It's really going to seem strange not driving to Dallas every morning, but I bet we'll get used to it! Monday, May 19 will be the last treatment. We will then be "off" for about five weeks before we start the chemotherapy cycles. The doctors pushed Ashley's start date for the chemo cycles back one week so that Ashley could go to summer church camp. We were thankful that they were able to do that, and that they were understanding enough to allow it. That will really mean a lot to Ashley not to have to miss Camp.
TAPERING OFF STEROIDS
Ever since Ashley's second really bad vomiting spell (after her second radiation treatment, about five weeks ago), Ashley has been back on dexamethasone (a steroid also known as Decadron). One of the side effects of the steroid is mood swings, which Ashley has definitely been experiencing. (Of course, Susan also experiences severe mood swings from time to time, but she's not on steroids. Ouch! She's looking over my shoulder, and I just got slapped!)
We asked Dr. Munoz, Ashley's radiation oncologist, about taking her (Ashley, not Susan) off of the steroids. He set her up on a tapering-off schedule, because you can't just drop steroids cold-turkey. Your body gets used to having the steroids administered artificially, and responds by shutting down its own steroid production. Gradually tapering the dosage back allows the body to slowly begin producing its own steroids once again, thereby preventing tissue swelling. Swelling would most likely occur if the steroids were suddenly stopped. Ashley has gone from taking 4mg per day to 3mg, and if everything looks good next Tuesday, she will probably be cut back to 1.5mg per day.
Ashley has been eating like a horse lately and has gained some weight. We think the steroids are probably contributing to this as well. We will be extremely glad when we don't have to give her the steroids anymore, and hope that the mood swings and the constant hunger will taper off with the reduction and gradual elimination of the dexamethasone.
(If anyone out there knows of any magic potions for curing Susan's mood swings, please, PLEASE let me know! Ouch!)
Last weekend, Children's Medical Center sponsored a "HOPE Picnic" for all of its neuro-oncology patients and their families. Activities included face painting, cookie decorating (my personal favorite), and flower-pot decorating. Pizza was served for lunch along with cold lemonade. Two clowns showed up and entertained the kids (as well as the adults). It was a very enjoyable event, and allowed us to meet some other families who are experiencing the same kinds of struggles we are.
Susan and I were both saddened to see so many kids whose innocent, carefree childhood has been stolen from them by the cancer monster. One little boy named Stephen wasn't supposed to have survived to his third birthday. He is now three-and-one-half years old, and is still fighting awfully hard. He was wearing a pair of "Top Gun" pilot's coveralls, and sported a handsome bald head! Another little girl named Kayla, probably about four or five, was just full of life and personality. Her enthusiasm and energy were absolutely infectious. I believe she has been fighting the monster for about two years now. At one point we heard one of the nurses exclaim, "Oh, look at all that hair! It's so pretty!" We turned and saw a beautiful little girl with a full head of hair, which had apparently grown back after being lost to chemo.
Today, we went to a Dude Ranch in south Dallas for a party sponsored by the American Cancer Society. They fed us hot dogs and hamburgers for lunch, and provided lots of entertainment such as a "moon walk", face painting, volleyball, sack races, a clown, fishing, and carnival rides. McGruff the Crime Dog showed up, as well as the Dallas Police Department's crime-fighting robot. Princess Leia, Obi-Wan Kenobi, and Darth Vader also made a special appearance. Justin almost caught a fish, Ashley and Justin both got smiley faces painted on their cheeks, and Ashley won a free ticket to Six Flags Over Texas amusement park. They both walked away with a pile of "freebies". It was lots of fun, and quite a "productive" day for them.
Now we're just sitting around waiting for the next party!
Once again, I want to express my heart-felt thanks to everyone who has been continuously lifting up Ashley and our family before the Father in prayer. Your love and support are appreciated more than you know.
God bless you all!