Thursday, September 23, 2010

another long winded post....sorry :)

Kaidan had her monthly check-up this week and it went well - her blood counts look good, she looks great, and I think the doctors are pleased. For me, it's been a rough couple of weeks as far as Kaidan goes. Her tummy pain is getting worse and worse - you should have seen her tonight. It's unreal and heartbreaking to watch the wave of pain come over her. She can be fine one second and the next she has intense pain, so bad that she can't stand to have anything around her waist so she'll use her hands to pull the waistband of her pants and unders out. It is so sad. The other day I almost took her to the ER because she couldn't stand the pain, but then it goes away, almost as quickly as it came. I feel like the doctors don't really believe that it's this bad, because of course, they don't ever see these episodes. We have been in contact with the GI doctor and I am hoping we get something figured out soon - most likely it will involve removing her gallbladder. We were leaving that as a last resort, but I think we're there.

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 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....


Chelsea said...

Sheesh.. poor Kaidan! I hope you guys can get the stomach issues figured out for her. I can understand a little about the headaches. Cami gets them pretty bad these days and nothing seems to help. They suck and Im so sorry for you all. We look up to your family in so many ways. You are such a huge support to everyone and Kaidan is SO brave. We love you guys.. lets get the kids together soon, I know my Caden would love to play with Porter. Hang in there you guys.

Amanda said...

Oh my goodness Mystee, how in the world do you find the time to bring Millie cupcakes when you have so much going on yourself. I can barely breath and you are doing service. I learn so much from you. You are an amazing mother. I am truly in awe of you. Thank you for being such a wonderful friend. I am so sorry to hear about Kaidan. I remember before Millie got diagnosed and I would call my doctor about Millie's intense leg pains and I knew they didn't believe that they were as bad as they were. It's so frustrating! I'm glad you're keeping a record. Please let me know what you need. I know you have a busy couple of weeks and I WILL bring you dinner when you have surgery. I know it's coming up so let me know what day is best, otherwise I will just show up at your door. I mean it, email me a day!
Love you guys