Thursday, September 23, 2010
She has also been having some pretty bad headaches. They come on about the same as the tummy pain, very suddenly, but she usually needs tylenol, an ice pack, and a nap to get rid of them. We have an appointment with a neurologist in December - that was the soonest they could see her :( but I'm keeping a log of her headaches until that time, so hopefully they will be able to see that I'm not making it up.
I can understand why it's so hard for them to believe me - Kaidan has always put on a real good show for the docs. I can remember when she had the flu in 2008, fever over 105 and she was sitting up in bed making melt beads. I remember the doctors and nurses saying she looked way too good for a kiddo with the flu, let alone a kid with the flu in the middle of cancer treatment!
Anyway, I'm just hoping they can get it all figured out. I want her to feel good. Of course, I get nervous. I try hard to talk myself out of "that thought"... but, it's a daily challenge, especially when she has these episodes. I read an article the other day that 90% of kids with t-cell ALL go into remission, but at least 30% of those kids will relapse. That is hard to hear, especially because t-cell relapses are in the spinal fluid a lot of the time and one symptom of that is...headaches...ugghh! I don't feel that Kaid is in that situation right now - I think these effects are just remnants of 3 years of poison being pumped into her little body - but there is a fine line between being optomistic and realistic and I'm constantly bouncing around both sides of that line.
September is CHILDHOOD CANCER AWARENESS MONTH! I am so excited because this is the first year that I have seen and heard so much about it! (I'm sad because I wish we didn't need a childhood cancer awareness month, but excited that word is getting out because we do need one, whether we like it or not) This Saturday I know of a bake sale for Cookies for Kids Cancer (1500 E. 1300 S. SLC) and a lemonade stand honoring Millie for Alex's Lemonade Stand (2345 E. Lambourne Ave. SLC). SO COOL! If you have a chance Saturday, visit one or the other (or both!) of these - not only to support childhood cancer research, but also to support the families that are doing the fundraiser. From our experience, I can say that I know it is soooooo important for families to feel supported when they do things like this (I really cannot stress the SO enough).
Thanks for listening to me ramble, as usual. I need to update more often to make these posts more reader friendly!! I do just want to finish with a couple of requests. I know a lot of you have prayed for our family, maybe you still do, but if you could add a couple of families to your thoughts and prayers I would really appreciate it. Devan and Chase. Both boys are fighting for their lives - lives that have been robbed by cancer. Please pray for comfort for them and their families. Also, please pray for Mrs. Bull and her family. Thank you.
a side note about the rest of us Sudbury's...
Nate will be having surgery in November for his sinuses/tonsils/and anything else you can think of in his mouth/nose area. He will be down for 10-14 days and it sounds like a horrible surgery. Sorry Nate, but I'm glad it's you and not me ;)
I will be having surgery October 6th for my knee, which I dislocated again last week. They will be fixing me up with a cadaver ligament...thank you young healthy person for donating your ligament to me :) P.S. Be an organ/tissue donor!! You never know what someone may need.
Preslee is sluffing school for soccer tomorrow - she's pretty excited about that...am I a good mom or what?
Cash had a rough day, he had to get a shot at the doctor and got his hand stuck in an elevator door. On a good note, he is growing like crazy - he has gone from my little premie in the NICU to a strapping 4 year old boy! He's in the 70th percentile in weight and 85th percentile in height!! Can you believe that?
Porter hasn't done anything to crazy to write about these last few weeks, but he's terrific anyway! He is just too cute. He has been running a fever for the last 2 nights, no other symptoms, just a fever. The pediatrician told me today that rosiola is going around - I guess we'll find out in a day or two if that is the cause of his fever because with rosiola you have a fever for a few days and then you get a rash when the fever breaks. Kaidan had it when she was a baby.
Thanks for checking in....
Monday, September 6, 2010
First off...HopeKids...an awesome foundation! They provide activities all year long for us to look forward to. We will be doing an adventure walk and 5K next Saturday, helping them raise money so they can continue providing all the fun stuff for Utah's Hope Kids and their families. Please visit our fundraising page www.firstgiving.com/mysteesudbury and donate a couple of dollars. We'd really appreciate your support.
Second...September is Childhood Cancer Awareness Month. So many activities will be taking place to raise awareness for childhood cancers. I challenge all of you to learn more about childhood cancer. Spread the word, one day we need gold to be as prevalent as pink! Check out some of these links:
http://www.46mommas.com/ - 46 moms shaving for the brave to benefit http://www.stbaldricks.org/
We are all doing pretty well. It's nice to have been able to enjoy a "normal" summer. Even though we didn't take any vacations or do anything out of the ordinary, we had a summer with no chemo, few doctor appointments, and no inpatient hospital stays. It's been 3 years since we've had that!! I can so vividly remember June 25, 2007 - it's forever etched in my brain - it was the beginning of a summer I wouldn't wish on anyone. Our summer is ending this week - Cash starts preschool tomorrow and the girls will start 3rd and 5th grade on Thursday! I will have 3 hours a day, 3 days a week with just Porter. He'll be bored out of his mind for sure!
Nate is doing well. He's recovered from his melanoma surgery and will probably be having a surgery on his tonsils/sinuses/etc. in the next couple of months. Hopefully he'll recover quickly and it will help him breathe better and give him some relief with his sleep apnea.
I'm doing great. I just had a little surgery that "officially" marks our family as complete - a bittersweet decision that we decided to make. It will be nice to move on in life and see how things change as we go from diapers to homework, but it's sad at the same time.
Preslee is doing great and loving soccer. She has played 3 games this season so far, 2 wins and 1 tie. She's the goalie for her team and both of their wins were shut-outs! I think she's pretty excited about school starting too, although it's hard to tell for sure because she doesn't say very much. She spends a lot of time in her room, listening to music and reading. I wonder often how the last 3 years has affected her. It's hard to know if she's just growing up, becoming a young lady - or if there are underlying issues. Time will tell I'm sure.
Kaidan is doing well, but still struggling with stomach issues, as always. We will be running more tests this week to see if there is anything else we can do. She has also caught a bug of some sort this in the last few days. She's been running a fever and had a cough. Hopefully it passes before school Thursday. I have felt so much better about her future the past couple of weeks. I don't know what the change is, but I've just found myself worrying less about her health. I doubt the underlying fear of the unknown will ever go away, but hopefully it continues to minimize as the months pass. She has been off treatment for 10 months now! I cannot believe it has been that long!
Cash is doing great. He's becoming quite the young man. I can't believe he's starting preschool and kindergarten is just next year! Time flies! I think he's having a growth spurt right now, because he is constantly hungry. I'm starting to worry about how I'm going to afford to feed two growing boys - they already eat us out of house and home (I'm not sure what that even means)! He is a sweet boy, most of the time ;)
Porter is growing up too. We're still working on the potty training, but he's a pro on Cash's old bike with training wheels. He's become quite the daddy's boy this month too! He seems to have more personality everyday and he's quickly learning to become a tease...just like the rest of them! (With the exception of Preslee, all the kids love to tease...Nate, where did they learn this?)
Thanks for checking up on us. We are still so grateful for all of your love and support over the last 3+ years. Please keep loving us and including all families with suffering kids in your thoughts and prayers. Specific kiddos I'm thinking of now are Chase, Devan, Shea, JP, Nikki, Carson K, Carson M, Millie, Cami, and Jadon. It's too many kids! Please help us raise awareness...CHILDHOOD CANCER IS NOT RARE!!