Thursday, December 9, 2010

GI doctor and a haircut...

Kaidan had her appointment with the GI doctor today. First, let me say that I like this doctor a lot. He sits down, talks to Kaidan and to me, and spends TONS of time with us. We've only seen him twice, but both times he spent over an hour talking to us! Second, let me say that he is a different nationality, and he definitely has some different mannerisms than I would like, but that isn't a bad thing - he's just a little "odd" to me. Third, let me say that I am really confused on what happened today - I'm not sure what I think about the next steps we are going to take.

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 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: 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...

Kaidan's blood work all came back good yesterday. She is growing and has finally hit the 20th percentile in weight!!! Her height is average for her age, but she is definitely a skinny mini. Everything looked great at her check-up, but we have a hefty line-up of specialists to get her in to see in the next little while...and I was hoping that 2011 would be the year that we'd finally not have medical bills...yeah right!

She needs to see a dermatologist for her many, many warts (this all started from her compromised immune system while on cancer treatment), a cardiologist for her continuing chest pain (her echo last month was normal, but the doctor wants a stress test done because she continues to have chest pain that radiates down her arm and it is usually associated with activity), an orthopedist for her ankles (her avascular necrosis was improved as of her last MRI in 2009, but her ankles roll inward and it's getting worse and not better, so it needs to be fixed before it's a huge problem - which it will be if we don't do anything), and a therapist for her anxiety (Kaidan is so uptight about everything. She can't even have fun with us because she is always worried about crazy things, so the doctor would like her to learn some coping skills now, rather than later. I also have quite a large family history of depression and anxiety, so it's better to get this under control now). She also has an appointment with GI Thursday (I am going to demand a scope because nothing wrong is showing up looking from the outside in, so it's time we look from the inside out. We will also be talking about removing her gallbladder) and a neurology appointment on the 15th (this is for headaches that seem to be getting somewhat better, but it takes months to get in to them, so I will be keeping this appointment and asking them if they have any ideas what could be causing the headaches she does get).

And we thought this all ended when she completed treatment in 2009... have I ever mentioned that I hate cancer?

Friday, December 3, 2010

Happy Birthday Kaidan...

Wow!! Kaidan turned 9 today! She is growing up too fast.

I have to look back on the day she was born. It was December 3rd (obviously) and I wasn't due until December 21st. I had my regular check-up and my doctor told me I was in labor and already dilated to a 5... The rest is obvious. She was born at 8:08 p.m. and she weighed 6 pounds 3 ounces. (I wish I had pictures, but I'm too tired to find them and scan them in - but I can promise you she was super cute!!)

I can remember her 1st birthday. She had a twinkle in her eye from the time she was a baby and you just knew she was up to something. She's always been a little (okay...a LOT) on the mischievous side :)

I remember her 6th birthday. She was in the middle of the toughest round of chemo in her treatment - but she still had that twinkle and was always smiling. She never had a bad attitude about anything she had to do - I wish I could say the same for me.

Today, she is a super happy, mostly healthy 9 year old. She's finally gaining back a little weight and she getting taller by the minute. I am so grateful for today - so, so grateful for Kaidan. There are so many times she drives me to the end of my rope and I get so frustrated with her teasing her brothers, but she is a huge blessing in my life and I love her with all my heart. Life would not be the same without her and all her spunky-ness in our family.

She will have her oncology check up on Monday. We will check her blood counts and see how she's doing. I had a few moments of anger toward cancer today when Kaidan told me that her body just hurts everywhere. She said it starts in her chest and goes down her arms and back up to her head. Her legs hurt, her stomach hurts, everything hurts. I really don't think she even knows what "feeling good" feels like. It's not fair - she is doing so great and looking so healthy, but cancer has robbed her of so much. It makes me mad, sad, and every other emotion in between. But, I am quickly reminded that it could be worse and I really am grateful for Kaidan's life. She is a survivor...a 9 year old cancer survivor. Today, we are the luckiest people in the world.

Happy birthday Kaidan! I hope all of your wishes come true!