Thursday, October 21, 2010
Sudbury happenings...
Cash's blood work was all great, but his ultrasound did show some fluid around his right hip. It's called toxic synovitis, but that name makes it sound much worse than it is. Basically we have to wait it out. We are treating him with Motrin twice a day and hopefully it's better by within a week or two. The doctor said it usually lasts about a month, but he's already been dealing with it for at least two weeks.
Kaidan missed her doctor appointment because I haven't figured out how to clone myself yet and I was dealing with Cash, but her blood counts look great and she has a full work up next month, so I figured she'd be okay. Next month she will be ONE YEAR OFF TREATMENT!! She will be having an echocardiogram to look for any possible damage from the chemo to her heart, seeing the GI doctor for her stomach issues, a neurologist for her headaches, and she will have her normal blood work and clinic visit. Sounds fun, right??
Everyone else is doing well. I will keep you all posted.
Please pray for Skyler and his mom Crystal http://crystalandskyler.blogspot.com/ .
Tuesday, October 19, 2010
monthly check-up and hip pain...
Also, Cash is having more blood work done today and an ultrasound on his hip. He's still complaining almost daily of pain and the past 2 days he's been in tears about it. In fact, yesterday afternoon he was playing the Wii and he just started bawling and wouldn't walk. I gave him tylenol and a heat pack and he fell asleep, but even in his sleep he kept waking up and crying out to me.
Preslee started an antibiotic Friday for a possible sinus infection. She has had this dry cough for over 2 weeks now and the antibiotic was a last ditch attempt to try to get rid of it. She has no other symptoms, but the cough keeps her up at night and you can tell it's wearing her down. Anyway, the medicine doesn't seem to be helping, so she may be visiting the doctor again today as well.
I am recovering from my knee surgery quite well. I started physical therapy today and it went well. I'm sure it will just get worse and worse though...I hate physical therapy. It is nice to get my leg out of the brace and stretch it out a little. The goal is to get rid of the swelling and be able to bend to 90 degrees within the next 2 weeks. The physical therapist is a little concerned because I have some strange swelling below my knee that just popped up. It doesn't appear to be a blood clot, but it is a concern, so I'm watching it closely.
What else...I think that about sums us up right now. We are kind of a mess around here, but we are functioning. I finally got my house cleaned today, that felt so good. Nate did a great job of trying to keep up on stuff while I was down, but he doesn't do things like toilets and mopping unless he absolutely has to, so the house was in need of a good cleaning. I felt relieved to get that done, now I just need to find time (and money) to sit down and pay bills. Ugh.
Nate's surgery is fast approaching. He had a second opinion today and the doctor recommended the same things as his original doctor did, so I guess it's a go for sure now. He is really nervous. He's getting his sinuses/tonsils/adenoids/deviated septum/etc. all worked on - so it's quite an intense surgery. He's scheduled the first week of November for that.
I'll update again tonight about today's doctor visits. I hope you all have a great day.
Friday, October 8, 2010
Cash's bloodwork looks great!!!
Please keep the families of Devan Lore and Thomas Musser in your thoughts and prayers, both of these boys entered heaven recently. Also, please pray for Grant Olsen and his family. He is in the maintenance phase of his treatment and has not been feeling well for quite some time. His doctors just confirmed relapse. Closer to home is cute Erin, she has been at PCMC for 22 days and is dealing with some pain, cellulitis, and her ANC has been 0 for most of those 22 days. Her mom has such a strong testimony and you can just feel her faith in her blog updates. Also at PCMC, Skyler and his mom Crystal. Skyler has been in the hospital for almost 2 months, in the PICU most of that time. Please keep all of these kids and their families in your thoughts and prayers. Thank you.
Many of you know I had knee surgery Wednesday. The surgery went well and I'm home recovering. It's been tough, because I hate not being able to get up and move around, but I'm in a lot more pain than I expected. I'm hoping that I'll start feeling better before the weekend is over. Thank you all for checking in on us. I'll keep you posted on Cash's leg. We love you all!
Tuesday, October 5, 2010
oh my gosh, what if...
Here's the story...
Cash has been complaining of leg pain since early last week. The first day was pretty bad, he wouldn't hardly walk. But, as time went on, he seemed better - only complaining periodically. By Friday he was still complaining off and on and Nate thought I should take him to the doctor. (Secretly I felt that way since the first day, but I really have been trying to minimize my thoughts when they start with "oh my gosh, what if...") Anyway, I decided we'd get through the weekend and see how he did. By Monday he was still complaining, so today I called and made him an appointment. I felt somewhat stupid because he is still playing and running around and it's really just sporadically that he complains. But, there I was, sitting in the doctor's office as she's checking him out - I'm telling her how dumb I feel. Then she asks him if his throat hurts...he says no. She tells me his lymph nodes are swollen. I am not kidding - my heart hit the floor. Suddenly my mind is RACING - swollen lymph nodes, random leg pain, more tired than usual, random nausea...
You see where I'm coming from, especially if you are part of the cancer world, right? I was freaking out inside. She ran a strep test and I was praying for it to be positive, but...NO. So she says we really need to have his hips xrayed, just to make sure...and I may as well get some blood tests done while I'm up there, you know, just to make sure...
Well, here we are at the end of the day, not all of his labs are back, but his CBC is and it's normal. His xray was fine. I do have to say that Cash was so brave! He did not want to get his blood drawn, but when it came time to do it he was such a strong, little man! Not a single tear! (is that how you spell tear? it looks weird) Anyway, the rest of the lab results should be back by tomorrow or Thursday, but so far so good! I cannot even explain the relief I am feeling right now; oh wait, now he's telling us his back hurts...real bad, and his leg is still bugging him, and his glands are still swollen! (This is where I let out a HUGE sigh....) I am so done with this being my life. I want aches and pains to be growing pains, I want a cold to be a cold, a bloody nose to be because it was picked, an extra nap to be because of a long day of playing, I want a fever to be a simple virus, a stomach ache to be because you ate your dessert too fast; you get the picture. But that will never be our life again. I try, I really do. We minimize most of the complaints that our kids give, because they usually are all those "normal" things, but in the back of our minds there is always that voice saying "oh my gosh, what if...."
The day wasn't all bad, we did get to go to the pumpkin patch with my grandma and some cousins after we were done at the hospital - that was fun, even though the trip started with Kaidan in the outhouse, crying that she just wanted to go home because her stomach pain was absolutely unbearable, but after a few minutes she felt better. (Here is another HUGE sigh...)
So, a good ending to a bad day.... I am thankful for that, so I'll stop complaining now :)
I really am grateful for all the good things, but I am going to be honest, there are days I wish so much that this wasn't our lot in life. I would love to be "normal", but I'm pretty sure I'm slightly psychotic and I think I'm going to blame childhood cancer for that.
Thursday, September 23, 2010
another long winded post....sorry :)
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
school days and childhood cancer awareness month!!!
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/
http://www.curechildhoodcancer.ning.com/
http://www.cookiesforkidscancer.org/
www.glad.com/gladtogive
http://www.goldthenewpink.net/
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!!