Thursday, December 9, 2010
GI doctor and a haircut...
The doctor decided that he thinks Kaidan's pain is caused from her extreme anxiety and that she is constipated. I know this is a private subject, but you are welcome to stop reading if you don't want to hear it. Now, I get that anxiety can cause stomach aches and other related issues - but Kaidan's "episodes" are not simple stomach aches. They are 20-30 minute time periods of excruciating pain. It's a horrible thing to witness. And I don't get the constipation thing at all. Kaidan has bowel movements several times daily, with no trouble, and they are bad. I mean, this girls is NOT backed up. We can't venture too far from a toilet EVER. So now he has prescribed a laxative and I'm thinking the next 2 weeks are going to be hell. Sorry for the word use, but seriously - we are giving this teeny, tiny girl who already can't go too far from a bathroom a laxative? Seems wrong to me. But...that being said...I am going to try it. I won't say that it can't get any worse, because I'm thinking it can, but we'll give it a go anyway. He felt something in her stomach, and he thinks it was backed up poop. I'm now thinking what if it's not? Oh boy...
So, the plan is to do another stool study to look for the H Pylori, start her on laxatives and eating more fiber (YIKES!!!), starting her on a prescription to help with what he called functioning pain (this is from the anxiety I guess), and follow up with him by phone in 3 weeks and in person in 3 months.
I guess this is a start. Now, on to the next problem ...neurology, dermatology, psychiatry, orthopedics...where to start, WHERE.TO.START! :)
On a side note... My mom gave my sisters and I all haircuts today and so I got myself a new do and had a full circle moment. I haven't had a haircut in over a year. I told the stylist I'd like it short, but not too short and we decided what length it would be. She said just a couple more inches and I could have donated to Locks of Love...so...I DID IT!! I chopped it all off and donated a hefty chunk of hair! So exciting - I've wanted to do that for a really long time, so I'm happy :)
Speaking of donating - wouldn't a great thing to do this month be to donate something you've got that someone else desperately needs? You would be so proud of yourself :) Join the national bone marrow registry or donate blood products at ARUP or your local red cross. Here's some information that I copied from some other blogs that I follow:
This Christmas, here's two relatively simple, FREE gifts you can give your fellow man:
1. Get registered in the bone marrow donor registry: http://www.marrow.org/JOIN/. There are many people who need a life-saving bone marrow transplant, but who don't have a match. Right now I know of at least 3 different families going through or getting ready for a bone marrow transplant - and that is just ones that I know, there are SO many others. YOU could be someones match. It takes about five minutes to get signed up. Get registered and give someone hope! Our friend Rachel was able to find a donor, can you imagine if she was saved because of YOUR marrow? What an amazing gift for everyone involved!
(I signed up a couple of years ago and I hope I get to be a match in my lifetime. Everytime I start worrying if it may be painful I just think of how many bone marrow biopsies Kaidan had. She never complained of anything more that a sore hip for a couple of days. If she can do it - so can I, and so can you!!)
2. Donate blood at your local Red Cross or ARUP. A single platelet donation can provide enough platelets for a full therapeutic dose for a patient in need. In fact, some platelet donations yield enough platelets for two or three therapeutic doses. By contrast, it takes about five whole blood donations to produce a single therapeutic dose. Many patients who need platelets are undergoing chemotherapy or organ transplant and have weakened immune systems. A platelet dose from a single donor reduces the patient’s exposure to multiple donors and is therefore preferred by many physicians. During a platelet donation, a small portion of your blood (less than one pint at a time), is drawn from your arm and passed through a sophisticated cell-separating machine. The machine collects the platelets and safely returns the remaining blood components, along with some saline, back to you. After the donation you can resume your normal activities, avoiding heavy lifting or strenuous exercise that day. According to the American Red Cross: every two seconds, someone in the US needs blood. Kaidan had over 40 blood and platelet transfusions during her treatment. And there's millions of other cases where people need blood. It is life-saving, our cancer buddy Skyler needs platelet transfusions daily.
Some Facts About Blood Supply Needs and Blood Donation -from the American Red Cross
•One donation can save the lives of up to three people.
•The demand for blood transfusions is growing faster than donations.
•Shortages of all blood types usually occur during the summer and winter holidays.
•Less than 38% of the US population is eligible to donate blood. (So if you can, you can see that you're sorely needed!)
•It is possible to donate specifically only platelets or plasma. This process is called apherisis.
•Donated platelets must be used within 5 days of collection - new donations are constantly needed.
•Healthy bone marrow makes a constant supply of red cells, plasma, and platelets. The body will replenish the elements given during a blood donation - some in a matter of hours, and others in a matter of weeks.
•The average adult has about 10 to 12 pints of blood in his body. Roughly 1 pint is given during a donation.
•The average red blood cell transfusion is approximately 3 pints.
•A healthy donor may donate red blood cells every 56 days.
•A healthy donor may donate platelets as few as 3 days apart, but a maximum of 24 times a year.
You must be at least 17 years old, weigh at least 110 pounds, and be in good general health to donate. (Eligibility requirements may vary in some states and donation centers.)Please, if you possibly can, get out and donate this holiday season.
It's one of the best gifts you can give.
This Christmas, GIVE LIFE!
**feel free to copy and paste this post onto your blog (I DID!)
Tuesday, December 7, 2010
December check-up for Kaidan...
Friday, December 3, 2010
Happy Birthday Kaidan...
Monday, November 29, 2010
thanksgiving 2010...
Preslee played 4 games - they had 1 win, 1 tie, and 2 losses. The team played really well and all the games were really close, so we are very proud of her and the entire team. It was a lot of fun.
We hit the storm on the way home, which made for a LONG drive, and the car trouble we had in Nephi didn't help either, but we are all home, safe and sound.
I am thankful this year for many things, but mostly for my little family. I am so happy that my kids are all healthy and that I got to celebrate another holiday with them. We are truly blessed.
Please send lots of prayers up for Crystal and Skyler tonight. Skyler is having surgery tomorrow to remove his spleen and Crystal is a scared mom. She needs our love and support. I cannot even imagine what the last several months have been like for her, but she is absolutely amazing. And there are no words to describe Skyler! He has to be the strongest boy I've ever had the pleasure of meeting. He is definitely a super hero to us. www.crystalandskyler.blogspot.com
I hope you all had a happy, healthy, safe Thanksgiving. We are truly thankful for each of you and the support that you continue to give our family.
Wednesday, November 17, 2010
ONE YEAR OFF TREATMENT...really??
I can't really say that it feels like we've been done with chemo for a whole year. Some days it feels like we are still in the middle of it because of the side effects she struggles with, other days it seems like it's been forever since we were there. Either way, I'm happy that she's doing well and living a mostly normal life - she definitely deserves it.
Everyone else is doing well. Nate is recovering nicely and has gone back to work, my knee is almost back to normal, and Cash's hip complaints are few and far between. Preslee is getting geared up for a soccer tournament in Vegas over Thanksgiving and Porter has hit the terrible twos :)
Tonight I got to chat with some other cancer moms who have become great friends to me. Please keep all their little ones in your thoughts and prayers as they are all in different stages of treatment.
Thursday, November 4, 2010
Halloween and Nate's surgery...
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!!
Wednesday, July 28, 2010
Seriously...July is almost over???
Who could have guessed!! Who would have ever thought that only 9 short months later we'd be one of "those families"? But, look how far we've come - Cash is almost 4 and Kaidan is almost 9 months out of treatment! Amazing...
Cash is doing great! He's a PRO on his bike WITHOUT training wheels. He actually rode his bike all the way to my grandmas house last weekend (it was a tough ride - I barely made it). He wants everything that he sees on commercials and he loves to tease and torment Kaidan. He's growing up so, so fast. He loves to play outside, loves bugs, dirt, water, and all things BOY!! Such a little man!
Porter is doing well too. He has a vocabulary that constantly amazes me and his eyes can melt your heart! I had him into the doctor this week for an eye infection and he does NOT enjoy getting the eye drops, but other than that he is doing great. We're still working on the potty training, I'm not really pushing it, but hopefully he'll be out of diapers before I need to buy them again :)
Preslee is awesome as always! She will be starting 5th grade this year!! I can't believe she is getting so old - what does that say about my age? She's had one soccer tournament this summer - her team took 2nd place. They have a 4 v 4 tournament this weekend and the regular season will start the end of August. She loves it so much!! I'm so glad that she has something she is so passionate about in her life. I'm also very grateful for my sisters who keep her overnight on the days she has practice so I don't have to worry about getting her there! It's at 8 in the morning and we only have one car, so it has been a challenge working everything out, but luckily they help me on a daily basis!
Kaidan is doing well. We had her monthly check-up with the oncologist yesterday and it went fine. We had a little scare this month because she has not really been feeling well. She had a lot of random pain, especially in her head, she ran a low grade fever for several days with no cause, and she was having lots of tummy troubles again. I think I'm the only one who all of this scares, but can you blame me?? Her blood counts were good, her weight is not really increasing, but it is holding steady, and she's had a major height spurt, which is great! The doctor reassured me that she's okay, although I'm still nervous. I don't know if this will ever get easier. I am so constantly worried that there is something brewing in her little body. It's frustrating because Kaidan puts on a great show out in public. She perks up and bounces around like nothing is wrong. She looks great and all in all she IS doing great. But...at home she is overly tired, always dealing with some ache or pain, her tummy almost always bothers her, and she just generally doesn't feel good. I think she feels okay, but I don't know that she ever feels great. I just want her to feel FABULOUS, but that is taking so much longer than I expected. All in all she is doing well, progressing along and recovering from years of toxins being pumped into her little body. I am grateful for where we are and how far we have come.
Nate is doing well. He's recovered from his surgery and he is getting better (sort of) at wearing his CPAP. I imagine that it's extremely uncomfortable and definitely a nuisance, but I still wish he was more serious about it. We all worry about him and I know he'd feel better if he could wear it more consistently. So, I'll keep nagging him and I'm sure he'll keep getting mad at me, but hopefully within the next couple of weeks he'll get completely use to it and be wearing it regularly.
I'm doing good. I quit my job because of the stress it was putting on everyone, especially me. I spend time every day looking for jobs, and hopefully I can find something soon that will work for our family. We really need the extra income.
The ducky derby is coming up quick, so if you can, please sponsor a ducky...you could win $15,000 towards a new car...someone has to win! Also, please keep all the little kids battling right now in your thoughts and prayers. A few I'm thinking about often right now are JP, Devan, Millie, and Cami. It's not fair...no one should have to go through this...especially not a child. Also, Elliott's mama...she has had a few rough days dealing with her grief. Thank you...
Wednesday, June 30, 2010
Time is flying by and lots of things have happened in our family, which I'll talk about in a minute. First and foremost, however, please take a moment in your days to think about all the families who have little ones struggling or who do not have their little ones to hold anymore and include them in your thoughts and prayers. Sadly, I am reminded on a daily basis that life is not fair, and things can change so very quickly. We have daily reminders that the only thing for certain is uncertainty. A single moment can change everything. So many families are facing difficult times and it's a harsh reality to be a part of.
Secondly, it's Make a Wish Foundation of Utah's ducky derby time again. Many of you who have donated in the past may have received a brochure for this years' derby...you may have opened the brochure and noticed a couple of amazing girls had their picture in it!! How cool is that!! Preslee and Kaidan on 35,000 brochures! Pretty neat stuff. Times are hard, but that doesn't stop life threatening illness from plaguing kids and their families. Please support the MAW foundation, even $5 helps, and of course, you could win the grand prize!! (This year it's $15,000 towards a new vehicle) Personally, I hope we win because we are in need of a new car-Nate's car quit on us and we are officially a one car family-it's NOT working out very well :) But, I will be happy for the winner, which most likely will not be us, but I'd love it if it were someone that we know! So please donate!! (I had trouble setting up a donation page tonight, but I'll get it done, so please search for Kaidan Sudbury and donate under her name. The link is on www.utah.wish.org, it just wasn't working tonight.)
Okay, on to news about us! I'll start with those of us who have had nothing too unusual going on. Porter is absolutely AWESOME!! I love that kid. He's just so mellow and fun to be around. He's a bruiser and I think he'll definitely be doing some serious sports as he grows up-he always has a ball of some sort that he is playing with and he can entertain himself FOREVER just by throwing a ball at the wall and picking it up and doing it again. And...tonight he pooped in the potty for the first time!! (sorry if that's too much info) He's just growing up way too fast!
Cash is pretty awesome as well, and I love him equally! He does create some havoc in my life though! He is going through his terrible twos (yes...he's almost 4)! He is such a handful, but then he'll bring me a dandelion that he picked just for me and he'll give me the sweetest kiss and say he loves me and I just LOVE HIM! Tonight we were working on riding his bike without training wheels-I cannot believe he is getting so big!!
Preslee is doing great. She's on a competition soccer team this year and she is SOOOO EXCITED! She will be the goalie, which she is AWESOME at and she loves! She is such a sweet girl, always helping with the boys and trying to do her best in everything she does. I just love her to pieces. I couldn't make it without all her help.
I am doing good, always tired, but good. I have started a night job to help make ends meet, and it's been a HUGE adjustment. I don't mind the work, but I do not like the job. It's been really tough, but I do have applications in elsewhere and hopefully something else with some benefits or perks will come up soon. I've been struggling for awhile with arthritis-like pain and occasional numbness in my arms and hands. The doctors I've seen have decided I probably have Lupus, but there is really no definitive test that says that is what it is-but that's what they are treating me for. Most of the time it's not a big deal, but I do have occasional flare ups that can be quite painful. For now it's mostly just a nuisance.
Kaidan is doing pretty good. Up until a few days ago I would've said she is doing great, but she came down with a bit of the stomach flu and hasn't been the same since. Needless to say, I am worried. Nate and Cash had something similar, but they were both over it in less than 24 hours. Kaidan is going on 5 days now. She's had a very upset tummy, along with fatigue and fevers. She did have her monthly check up with her pediatrician a few days ago and all was well. Her counts dropped a bit, so her white count was low at 4.7 (i think) and her ANC was 1800. Good counts, but not as good as they have been. She also lost 2 pounds, which is a concern. Hopefully she starts feeling better and I can get out of the "what if" mode. She is such a sweet girl and I just love her so much. She has been through so much, I feel awful that she still has to get these little bugs that seem to always be worse for her than they are for others. Kaidan has always kept little "collections" of things. Usually things that I would consider junk or trash-she has kept ALL (I think) of her hospital bracelets in a little basket in her room since she got sick in 2007 and she counted them the other day. She had 99! So, last week at her blood draw she got her 100th hospital bracelet...WOW!! She has to be one of the STRONGEST people I know, my HERO for sure. We have her follow up at the oncology clinic the end of July and I have some questions for them, but hopefully she is doing well, gaining weight, and her blood counts will have rebounded.
I don't even know where to begin with Nate! He had a small mole on his ear that I hadn't noticed in the past. His biological mother has quite a bit of melanoma in her family, so I told him he better get it checked. Finally, he did, and it turned out to be melanoma! It went quite deep down into his ear and the doctors were a little concerned that the cancer may have spread. So, they have removed 2 inches off his ear and 3 of his lymph nodes in the neck area. Luckily, everything came back clean so he is now just left with 2 different sized ears, a hefty scar behind his ear down to his neck, and a $12,000 hospital bill! (but NO CANCER, so we'll take it!!)He will have to be seen every 4 months for a full body scan to make sure he doesn't have any other growths pop up. CRAZY!! It was a scary couple of weeks, but we are SO HAPPY that it hadn't spread. In addition to the melanoma, after his surgery his sleep apnea problems really surfaced and he had some serious struggles with his oxygen saturations. He ended up overnight in the hospital and tonight he is back for another sleep study. They have told him that he has life-threatening sleep apnea that he MUST take seriously. Hopefully they can get him on the right CPAP and oxygen levels to keep him healthy, ALIVE, and get him feeling good. The poor guy deserves to know what a good night of sleep feels like! I'm really hoping they can help him. Our insurance company is giving us some problems, but what is new? I just would love to have it all fall into place and work out so that he gets the help he needs and it doesn't kill us financially, but we will do whatever it takes to get him healthy whether insurance helps or not. I want him to be around for many more years and the doctors have made it very clear that his situation will not allow that if he doesn't make some changes. It has been a scary time for all of us-I know the kids are worried about him not breathing while he sleeps, especially when I'm at work-so I hope they find some answers tonight to help relieve concerns that we all have had. By the way, I love Nate too! He's a pretty awesome guy when all is said and done! I couldn't have imagined what a great dad he would become 10 years ago, but man oh man!!! he is the best dad in the world! The kids adore him, he is so supportive of them all and so present in their lives-just an AWESOME guy!
I think that sums it up!! If you are still reading...WOW! That was very long-winded. I really will try harder to keep up with my journaling better. As always, thank you for your continued love and support for our family. We couldn't have traveled this bumpy, bumpy road alone. We love you guys all so much!
Sunday, May 2, 2010
Updates
Also, I'm going to post the link for Luke Jensen and his family. I have mentioned him before, he has AML, he's had 2 bone marrow transplants, but the cancer has returned. Please read their story. They are an amazing family also. www.caringbridge.org/visit/lukejensen
We are all doing well. I am constantly reminded to be grateful for where we are because things could always be worse.
Tuesday, April 27, 2010
this and that...
As far as our family, we are all doing well. We are always busy with finishing up our repairs from the flood and now trying to keep up with our kids soccer/tball/lacrosse/etc, not to mention dog obedience and turkey hunting. It's fun and crazy! The kids are having a blast though. I had hoped that Kaidan's stomach was better after we finished up her antibiotics for the H Pylori that she tested positive for, but I'm afraid that isn't the case. She was doing really well for a couple of weeks, but the past couple of days have been tough. We'll have to see what we can do. Her next clinic appointment is May 4th and then we will be transferring her care to her pediatrician. She will still have labs done and be seen monthly, but we'll avoid the hospital which will be nice.
I have some new pictures, but I can never find the time to post them, so I'll try to get to that soon. I'll update again if/when I get them online.
Saturday, March 27, 2010
it's weighing on my mind...
Have I ever told you that I HATE CANCER?? Especially childhood cancer! Kids should not have to go through what cancer makes them go through. And it's really not just cancer, it's anything that makes a child suffer. It's just heartbreaking. I read a lot of carepage/caringbridge stories and this past couple of weeks many of the families I follow have been devastated by more bad news. One boy, Luke, is going through cancer a 3rd time, this time with no idea what more they can do. Elliott, he reminds me so much of my brother, is in a medically induced coma to try and let his body heal from many things, some caused from previous cancer treatment. Meaghan, also in an induced coma, has endured this for 7+ years; she recently faced a new cancer diagnosis while she was being treated for a different cancer. She got great news that her bone marrow was 100% donor and within a week or two is now in the ICU fighting for her life. JP doesn't have cancer, but he has spent months and months on end in the hospital fighting. There are so many others that are unsure of what their futures will bring, whether they are waiting for test results or just living the "after cancer life" like we are. There are many more who now count the days since they have physically seen or held their child...I can't imagine that.
I am so glad Kaidan is still here, I feel blessed and lucky...sometimes I think I even feel a little bit of survivors guilt. We do still have daily reminders of what we have been through...daily reminders of how quickly things can change. Kaidan's stomach issues are bad, and I cannot seem to get the thoughts out of my head that it's more than what we are finding right now. We have no idea what problems may arise in the future because of the poisons we pumped into her little body.
It's a daily struggle to remember to enjoy the moment and to stay positive. We do our best to be thankful for everything we have, but I'm not going to lie, there are times when I am not thankful. I am angry that this is what our life has become, that I have a habit of putting my hand on Kaidan's forehead checking for a fever, that I can't sleep because my mind can't shut off the "what ifs". I'm mad that Nate has had to juggle work/home/hospital time for the last 3 years. I'm angry that Kaidan has had to do things that no one should ever have to do, that she has bravery beyond her years. I'm angry that she gets completely wiped out, just from shopping or playing for half an hour. I'm angry that Preslee has witnessed all of it, I'm sad that she has grown up too fast, not because she wanted to, but because she had to. I'm sad that she has had to take on more responsibility than most 13 year olds have. I'm sad that our boys know what puke buckets are for, that they don't think it's weird to throw up all the time or to always feel sick. I'm angry that to them it's normal to have to go to doctors and hospitals on a weekly basis. I'm angry that we can't breathe because of the financial toll illness puts on a family....
I guess maybe I'm a bit more angry than even I realized, but there are still things that I am thankful for. I am thankful that Nate and I have a strong enough marriage to get through everything we've been through. I'm thankful that Preslee is an amazing daughter, that she has handled everything with grace and that she loves life. I'm thankful that the boys are normal (at least I think they are normal), that we were able to keep some consistency in their lives and that they love their sisters dearly. I'm thankful that both Nate and I have jobs that are understanding and flexible. I am glad that we have health insurance...I think...even though it's expensive. I'm thankful that Kaidan is sassy, brave, strong, and feisty. I am thankful that she has the most positive attitude and that she has not let cancer define who she is.
Since Kaidan's diagnosis I have wanted to raise awareness, but the past couple of weeks it seems to be all I can think about. Unfortunately, I don't know how to do that and I have a full plate already with just trying to keep a house clean and taking care of the kids. So, I can only do small things now, but one day...one day I will do something BIG!!
Please support childhood cancer research. Please visit my sisters blog www.crochetforcancer.blogspot.com . Please visit other website links I have on this page. Please donate blood and sign up to be a bone marrow donor. Every little bit of awareness helps...you can get car magnets from Candlelighters, you can help spread the word. September is Childhood Cancer Awareness Month, we need that to make the news! Betty Crocker is doing their Stirring Up Wishes campaign again to support Make a Wish, please support them by purchasing their products and visiting their website to find out more www.stirringupwishes.com .
If you read to this point, thanks for listening to me whine. I've found it is very therapeutic to vent, even if it's just to a computer screen. We so appreciate all the support and love that we have been given, thank you!
Thursday, March 25, 2010
We have had a fun couple of days. On Tuesdays in March the boys have been doing Itty Bitty Lacrosse...so much FUN!! It's just great to watch a bunch of 2-4 year olds running around with lacrosse sticks! For anyone who doesn't know Cash that well, he is a home body. He loves to stay home and just hang out. He has fun doing things, it just takes a little (sometimes a lot) of coercing to get him to actually leave the house, but once he gets where we're going he usually has a great time. So Tuesday morning I was getting the boys ready and this is the conversation Cash and I had:
Me: Come on Cash, hurry and get dressed.
Cash: Where are we going mom?
Me: To lacrosse so hurry up, we're going to be late.
Cash: I don't want to go today, my foot itches.
Me: Fine, we don't have to go.
Cash: Can we go swimming to that place what has the blue slide? (Yes, I meant to type "what". He always says "what" when he should say "that". It's so funny. He also thinks that tomorrow means yesterday. I cannot figure out how to explain that one to him.)
Me: NO...If we're going anywhere it's to lacrosse.
Cash: FINE mom...I'll go to lacrosse, but my foot still itches.
Isn't that great? He cracks me up every day. He has really had fun doing lacrosse and is now convinced that he is on a football team, a soccer team, and a baseball team. He always had some sort of game that started 3 minutes ago and because of me he is late. I have no idea what he is talking about, but for his own sanity I did sign him up for t-ball that will start in April. It should be fun. My pictures from lacrosse turned out too dark, but I did get a couple of Porter that turned out.
Tuesday was also Kaidan's first soccer practice! She was so, so excited. Porter and I took her, so Porter got some good playground time in too.
This is what Kaidan looked like on the way to practice...she also fell asleep on the way home.
Today my sisters, dad, and Steve took the girls snowboarding. They were so excited to finally get to go! The boys and I drove up to watch them for awhile, so even Cash got in a little run! He is such a strange little man, on the way up there he was asking me if we were going to the snowy mountains or the desert. ??? He thinks he's Diego or something.
So with all of this fun stuff comes some crummy stuff too. You knew it was coming, right? Nate's car didn't pass inspection on Monday...bummer! He is currently driving an unregistered car with an expired drivers license. I'm pretty sure he's going to end up in jail :) Hopefully we can get both of those things taken care of this weekend, it's the new drivers license requirements that are holding us back on that. We can't find his birth certificate, so I'm waiting for a new one to come in the mail. The car is going to cost a bit of money, so I'm not real happy about that. On Tuesday the GI doctor called and Kaidan's tests were all normal except she tested positive for H Pylori. It's some sort of bacteria that can cause chronic gastritis. So she is being treated with 3 different medications for that and her prescriptions were over $200...double bummer. On Wednesday I was running late to pick Preslee up from soccer so I may possibly have been driving a little fast....I may also have gotten a speeding ticket...triple bummer. Oh well, life is life.
I had several things I wanted to mention as far as our cancer life goes, but I've rambled on enough, so maybe in a couple of days I'll get to that stuff, but look at me journalin' it up...pretty exciting!
Sunday, March 21, 2010
a great weekend...
I have so many new pictures, so I'm hoping to get my shutterfly page updated soon, but I'm going to put a couple from this weekend on here. I really need to be better at taking pictures...and at journaling...etc, etc, etc....
We had a great weekend, but the kids stayed up too late :( hopefully they'll recover by getting in bed early tonight. Friday I took the boys to Ogden and we hit the Treehouse Childrens Museum with Janae and her kids. The boys absolutely love playing with their cousins. I took some pictures but they were all blurry...I had the camera on the night setting. Of course! The afternoon was spent running around doing errands and such, Kaidan got her new soccer uniform and Preslee needed new cleats. She also talked me into buying her some goalie gloves. They are both so excited about spring sports!!! All the kids are loving having some nice weather and being able to play outside. I have to admit, I'm loving it too! It's so nice to have them dead tired by the end of the day :)
Saturday we went to see Alice in Wonderland with HopeKids. We all liked it a lot, it was a great movie. Then we went to my sisters lacrosse game at Westminster. She had an awesome game and scored 6 goals. It was such a nice day and again the kids had a blast being outside. Kaidan had a rough evening, with a low grade temp and lots and lots of tummy pain, but she seemed better today. I'm hoping to get some of her test results early this week.
Today Nate took the kids fishing in the morning and then we had a family party. Again, outside all day! We are loving it!! We played lacrosse, soccer, and barbecued! It was a great weekend.
Wednesday, March 10, 2010
another check-up...4 months off chemo!!!
We also had our long awaited visit with the GI doctor. Kaidan has struggled so much with her stomach problems since her diagnosis of leukemia and it hasn't gotten any better. We had hoped that as more and more time passed since her last chemo she would improve, but that isn't happening. This doctor was great! He took a good long look at Kaidan and asked her many, many questions. He also listened to me which is a plus. We had a test called a hydascan back in February. Clinic told me that this test came back with no abnormalities, but unfortunately they misled us. Her gallbladder didn't empty, which is an abnormality and can cause pain. We are also going to run more blood tests and stool tests to check for inflammation of her intestines, celiac, colitis, infection, etc. If those tests come back normal we will do an endoscopy to look at her intestinal tract, etc. If all of that is normal then we will remove the gallbladder. That is going to be our last resort, as we could go in and remove it now because there is some abnormality there, but it wouldn't necessarily stop her problems. The doctor felt like this was probably not the source of her problems, so we will only do that as a last resort.
It was a long day, but I was satisfied with our new plan (but very disappointed in the oncology clinic for not telling me that there was some abnormality a month ago). Kaidan deserves to live a normal life. Right now her stomach problems are interfering with this. I hope we can get it taken care of soon! Other than all of that she is doing well. She is going to play spring soccer and she absolutely cannot wait!! She is so excited.
Preslee is doing well, she will be playing with the same soccer team this spring and will also be doing lacrosse if the two schedules don't interfere with each other. She loves playing sports and is very good at it.
The boys are doing great too. They both just started an itty bitty lacrosse program that is just awesome. It is complete chaos, but so fun to watch. They are having a lot of fun and it's a good way to help with the spring fever we are experiencing. It seems like we have a couple of good days that they can play outside and then it's back to wet weather and they are couped up again. They absolutely love being outside...all of them do.
The dog....well, what can I say...he's a dog named Goose. He is insane. He still eats everything, not so much chewing, just completely consuming everything in his path. He's still wild as ever, and very easily excited, but hopefully next weeks neuter and a couple more months of puppyhood and we can get past that. Hopefully we'll have the funds to do some good training classes with him too. His damage to the house is getting repaired nicely. It's taking us a while because we are doing all the work ourselves with the help of our families, but it's looking good and we are making progress! I think we should have it all done in another month or so. Then, maybe, we can just sit and enjoy having a home of our own. We are looking forward to finally feeling settled.
I'll update more as we get results from Kaidan's stomach tests. Thank you all for the continued support and love. We really appreciate everyones continued concern for our family.
p.s. please visit www.crochetforcancer.blogspot.com and support my sister and childhood cancer!! she makes the cutest crocheted items and it would be great to start getting the word out about her website. childhood cancer is just awful. i read stories of other kids and it just breaks my heart. i wouldn't wish this life on anyone...it's horrible for all involved. if you are able, please support us. thank you
Wednesday, February 10, 2010
check up time...
There are still so many things that are concerning. She is still experiencing a lot of stomach pain, occasional headaches that are quite intense, bone pain throughout her body, blurred vision, and occasional chest pain. Whether or not these things are related, or whether they are indicative of anything is still unknown. She has an appointment with the pediactric opthamologists up at Primary's the end of this month and an appointment with the GI doctors up there on the 9th of March, which is also her next clinic check-up. Hopefully we can get some answers.
I don't want to sound like I'm not pleased with her blood results, but I do have a lingering feeling that something isn't right. Along with all her current symptoms, which are all too similar to how she felt for 2 months leading up to her original diagnosis, her white blood count and ANC more than doubled in the last couple of weeks, but her hemoglobin and hematocrit went down, just slightly. Her platelets stayed the same. That isn't a bad thing, but I would have liked to see them all increase. As a cancer mom, I know all too well that the white count and ANC increase and everything else decreases when there is cancer. Obviously her counts are all still great, so nothing is going on now, but it's very, VERY hard to relax. I try really hard, but I'm constantly feeling her forehead for a fever, constantly checking her out for weird bruises when she's getting changed for bed, and just constantly worried about the future and the unknown. Am I insane? Or is this normal? I imagine it will get a little better with each passing month and with each positive check-up. It is all just so scary.
Anyway, sorry to ramble on. I'm very happy that her counts are great and her immune system seems to be recovering. She is doing well overall, and I'm glad for that.
On to more news, Carson, our good friend from Bluffdale finished his treatment yesterday I believe!! Way to go!! We are so happy for them.
Also, my sister has her blog up and running. It's still in the beginning stages, but check it out! www.crochetforcancer.blogspot.com
Everyone else seems to be happy and healthy in our house. We are glad for that.
I'll update again after Kaidan's appointments over the next few weeks. Thank you all for your continued concern and support.
Saturday, January 23, 2010
long time no updates...
First, tomorrow (Sunday the 24th) on Nickelodeon at 6:00 (mountain time) there is going to be a special on childhood cancer. I really, really hope everyone who reads this will watch.
Second, my sister started a blog to help support research for childhood cancer. She makes the cutest crocheted headbands and hats and she is going to sell them and donate a portion of the money to CureSearch. I hope you all will go to her blog just to check it out, and buy a headband or two if you like, or just donate if you can. The address is www.crochetforcancer.blogspot.com. It's just in the beginning stages, so check it out now and again in a few more days!
Now, on to Sudbury-ness. I am hoping to do better at updating because I'm no good at keeping a journal and I really wish I did, so I'm hoping this will be more like that for me.
We've had a busy couple of months. December is always busy, of course, but we did have a great Christmas. We moved into our new house, and we got a dog. Those were the two major events of December along with Kaidan's birthday and our 10th wedding anniversary. Well...we had the dog and the house all of 4 weeks and he chewed through a pipe in our bathroom when we weren't home and flooded our house! So, our house is torn apart and we are now in the process of replacing and remodeling most of our upstairs and our garage. (That is a very un-dramatic way for me to put it all. There is a whole lot of nonsense associated with all of this:)
So, the flood started January for us. Since then we have lost our bird, Chewy. He is (or was?)a beautiful sun conure. He loved to sit on our shoulders and did it so often that you could easily forget that he was there and that's exactly what happened. Nate walked outside with the bird on his shoulder and something scared him so he flew up to a tree. We were unable to get him down and to make a long story short he ended up flying South and we haven't seen him since. Bummer.
As far as the family, we are all healthy and doing well. I changed the girls' schools after we moved and it proved to be a much more difficult transition than we planned for. So for now we are trying some homeschooling to finish out this year and hopefully I can figure something out for next year that will work better for them.
Kaidan is doing okay, not great, but it could be worse. She is struggling so much with stomach issues that it really has started interfering with her normal daily routines. She had some scans done this week and they all came back normal, so I'm not sure where we go from here. Her blood counts on Tuesday were good, but her white blood count and ANC are very low. This surprised me because she's been off chemo for so long and they are lower than they have been since last July. Along with this she seems to be more tired than usual and has been running a low grade fever off and on for a week or so. I am more than worried, to say the least. Her next scheduled appointment is February 9th.
I'll keep you posted on Kaidan and everything else Sudbury. Please try to watch that Nickelodeon special and definitely go to the new blog. www.crochetforcancer.blogspot.com (If you've got a website, we'd love you to put a link to Crochet for Cancer)
Thanks!!