Have you ever seen a sign that just spoke to you? That you just got a certain feeling from? Well, on our very LONG road trip, this sign spoke to me. Not once, but twice. It is a town in Southern Minnesota, somewhere near the Iowa/Minnesota border. I saw it on the way out of Minnesota. I thought about it, many times, during our trip. The first time I saw it, I wondered what it would be like to live in the city of Hope. Or say, "I'm from Hope." During our trip, I thought, "I hope I see that sign on our way home." I was trying to rack my brain to remember where that city was, yes it was a very long drive and I forgot where it was. I kind of watched for it, off and on, on our way home. Somehow, once again, it stuck out like a sore thumb (do you ever wonder where that saying came from?) Anyways, yes, there it was, just after crossing the border into Minnesota. Not the greatest picture but I got it. I was driving, and well, yes, trying to operate the camera on my iphone at the same time! Naughty, I know, but I just had to snap it. I just thought it would be a cool picture...exit here for Hope! I am planning to frame it and hang it somewhere! :)
Mainly "Hope" kept crossing my mind because it seems to mean so much to Aly. She doesn't talk about it often, but it keeps popping up here and there. When she was first diagnosed, her fourth grade teacher, Mrs. Woods, gave her a stuffed dog. Aly named it Hope. Most recently, we ordered an American Girl Doll for Aly...for those of you not on Facebook, I had posted that AMG FINALLY came out with a bald doll. Aly had to have one. During Aly's fight, I had ordered an accessory for a doll Aly already had and I asked them why they don't have a bald doll and made the suggestion that it would be nice for girls going through cancer or other illnesses that cause balding to have a doll that looked like them. (No, I'm not taking credit for them actually producing these dolls. I'd have to guess they've received MANY requests.)
To get back on track...Aly received the doll and, yes, named this one Hope. I didn't feel like I needed to ask her why. It has been a recurring theme. Every time this word is mentioned, by Aly, it warms my heart. This girl is something so special. She can't stop thinking about hope and hoping for a better future...adults take notice, your kids can teach you things!
Our trip went pretty well. Our first stop was to get Tom settled in his dorm in Lincoln, Nebraska. Yes, I shed some tears. Not too many, knowing that I'd see him a week later for his birthday. But, yes I will admit it. I shed more because he seemed to really want us to leave! He seemed excited for the adventure that was about to begin. Nobody ever told me it would be so hard to let your kids grow up and watch them pull away! Of course I loved getting a text from him, tonight, asking if anything would happen to his white clothes in cold water! Mom is still needed after all, YES!
After leaving Tom, we continued on to Austin, TX to see my brother Jeff and his lovely wife Steffani and their grown up kids. Steffani has been through the college years and she knew exactly what I needed. We arrived late Friday night, and on Saturday morning, I was told I had a "meeting" to go to. Steffani had set up a massage appointment for me. Then she took Aly and I to get manicures. What a treat! Thank you Steffani! You knew! :)
During our trip, Aly came down with an inner ear infection. We ended up taking her to an urgent care because she said she was in so much pain. She was having what she described as a headache and the pain was at the base of her skull and she said, behind her right ear. She was crying and just out of sorts. At some points she was just so dramatic, I couldn't believe there would be that much pain. The doctor took one look in her ear and said, "oh yeah, it's very red in there." He said Aly had, "a doozy of an ear infection." As soon as we heard that there was major relief, mostly from Aly. It was like a switch went off and she was back to her old self, for the most part. She still had some pain and discomfort, but it seemed a lot less than before. She admitted she was extremely worried. Granted, she has every right to be after all she's been through, but it was noticeable that she was overreacting. It is frustrating that something like this would cause her to freak. It wasn't a pleasant thing to see, and it tells me, further, that she would benefit from some type of counseling or group session with other survivors.
Once the diagnosis of the ear infection was taken care of, and antibiotics started, Aly was feeling better and wanted to give our trip to Schlitterbahn's a try. We had to switch our plan from Monday, to Tuesday, but we got it in! Thank you to the Wesloh family who have connections at Schlitterbahn's. We were given free tickets to enjoy the waterpark! It turned out to be a great blessing because we weren't able to stay all day and make the most of the park. Aly wasn't feeling the best, so we took it easy, mainly staying on the lazy river rides. She still had a lot of fun, and said it was everything she wanted! Uncle Jeff attempted to take her on a tube slide, but they ended up waiting about 30 minutes and then the ride broke down! That was the only disappointment! To wait all that time with anticipation only to have it dashed! Aly's ear pain was starting to return as they were waiting, so they gave up and came down from the ride line. It was time to go.
We have also been continuing the increase on the growth hormones. It was increased to .5 dosage this week and right away, the desmopressin to control her urine output stopped working as well. She has now been getting up 2-3 times in the early morning to go. I called the Dr. and, as usual, our doctor was out of the office. Do they ever work? I talked with the Doc on call and was told to drop the dosage back down. This doc said that if we continue on the lower dose Aly will not get the optimal results, so they will have to discuss what to do. Our doc said that some kids whose body is not making any growth hormones can do very well on the small doses. I REALLY don't get the difference in opinions. I will have to wait until Monday and ask our doc AGAIN! Have I said before that I feel like Aly is a lab rat? I have lost so much faith in doctors. It is a sad statement, I know. I need that city of "Hope"...I think!
Wednesday, we drove back to Nebraska. Thursday we spent the afternoon with Tom and took him out for a birthday dinner of his choice. He then asked if we could meet him for a late breakfast between his morning classes on Friday before we left for home. That was a nice treat (his asking). We made it home Friday evening. I am feeling overfed, overly lazy after sitting so much, but the sun, relaxation and fun was much needed!
Today, we volunteered at the Meat Raffle. We met another family going through cancer. The raffle was to raise money to support Devon, a 5 year old boy, with Lukemia, and his family. It seems the circle is getting bigger and bigger. I don't know if it just because we've been through it or if a bigger light is shining on cancer, or if there are truly more cancers diagnosed. We have also signed up to walk in the CURE Search Walk on September 8. We have joined Luke's Team. I asked Aly if we should join Luke's family or start our own team for the walk. She, being the unselfish person that she is, said, "I think we should join Luke's." If you'd like to join us or donate towards the search for the cure please follow the link below!
http://www.curesearchwalk.org/twincities/teamluke
