Another month down...

Yesterday we survived another slow day for Riley's clinic appointment. We started the day off with Riley's follow-up Echo appointment...which she ROCKed thru. She had her first one a little over a year ago, before she started the red medicine Doxirubicin. So, they wanted to do a follow-up to make sure her heart had not been damaged from the medicine. Which only makes a little sense - she was only on that medicine for a week, and that was over a year ago...so even if it had damaged her heart, wouldn't we have wanted to know that a long time ago? Moving on...so, last year she fussed and squirmed thru the whole exam leaving the results a little questionable, because they were unable to know if some of the levels were off due to her fussing and squirming or if it was from an actual problem with her heart. They weren't "off" enough to warrant any other testing, so we considered everything ok and left it at that. Yesterday, she layed there like a rock star and never made a peep...just goes to show you how much she has grown over the last year. It probably didn't hurt that we had bribed her with some Gift Shop perusing, if she were good...and she was, so we happily obliged her with purchasing some of said gift shop's finest plastic jewelry. The girl is easy to please!

Next we were off to the Cancer Clinic for her monthly doctor visit and chemo. We got there early, hoping it would make for a shorter day...but naturally that didn't happen. We arrived at 10:45 for our 11:35 appointment...and at 1:40 we had yet to see Dr. Dreyer. Thankfully, once we did finally see Dr. Dreyer everything else went quickly and we were on the road by 3. Our time in the waiting room was interesting, as they had a Native American singer/dancer there to entertain and teach the kids about some of her heritage...we definitely got some good laughs from it. Riley sat and participated for longer than I thought she would. At one point the singer/dancer was talking about the "old days" when there was no electricity or lights and asked the kids how they thought the people were able to see at night with no lights...Riley shouts out "umm, a flashlight" (kind of like DUH, lady). Good try, but there were no batteries in the "old days"...that's my girl!!

She was shaking one of the festive "rattles" (for lack of a better word) during one of the dances

Everything at Riley's check-up went good. Her counts are low, but tolerable. Her ANC is 530...cut off for isolation is 500. So, we are keeping our fingers crossed that she stays well!! We will check back again in 2 weeks and make sure everything is still OK. Riley has also been battling a rash for a while...so we have decided to see Dermatology to get it straightened out. We started out thinking it was a heat rash, because it would come and go. Then it turned into an eczema type rash, and has recently moved to her face. Methotrexate, one of her home chemo pills, does cause a rash...but because this is getting worse they don't think it is being caused from this. I tried calling the Derm department at Texas Children's yesterday, but they were unable to find any open dates...so we will see what happens. The rash is likely to be gone before we can get in to see anyone.

Hope everyone has a fun and safe Holiday weekend...stay cool!!



My Dad and his friend/neighbor have this huge greenhouse where they grow mostly tomatoes year round and also some bedding plants. The kids were at my parents this weekend, and obviously had to earn their keep. Hayden is attempting to clip some of the "dead" branches from the pepper and tomato plants...notice the gloves and all. Hope this isn't breaking any of those child labor laws, Dad!!

Rhyme time...

Here is a little snippet of a conversation you would have overheard at our house this morning -

Riley: Mommy, you know what rhymes...car and har
Me: Yes, that does rhyme but har is not a word...try again.
Riley: (thinks for a minute) ok, head and ged
Me: again, ged is not a word...what else rhymes with head?
Riley: zed
Me: um, good try but no...here's a hint, it's something you're laying on (my bed)
Riley: (rolls her eyes) Mommy, head and blanket do not rhyme!!
Me: *sigh*

Where does she come up with this stuff? I wish I could record her for a day, and let you get a glimpse of our life...it is definitely a riot!! I took her to the movies last night to see Up. I thought it was a good movie, and when I asked Riley if she enjoyed it she informed me it was too boring having sit in one place for that long. Whatever! I know she liked it because she was giggling the whole time...she just likes to be a little turkey!!!

Riding for Riley

Well, maybe not ONLY for Riley...but it did catch your attention!

We got a call last night from a very sweet man named Ronald Mascheck. Ronnie informed us that he will be joining in with the Houston Police Departments Bicycle Relay team, on an 1,800 mile bike ride benefiting the Leukemia-Lymphoma Society. This group of bike riders will leave Houston tomorrow evening, and plan to arrive at their destination in Providence, Rhode Island 5 days later. The best part is that Ronnie will be riding in honor of Riley and Paige!! He will also be riding in memory of his step-son Zach Grafe. Zach was 32 years old when he lost his battle with Leukemia in 2007...after beating it and relapsing a total of 4 times. Ronnie said he will wear dog tags around his neck for Riley, Paige, and Zach...and when he is pushing hard to make it up those mountains, and the dog tags are beating against his chest, he will be reminded who and what he is pushing for. A CURE FOR THIS DREADED DISEASE!!!! Amazing! Unbelievable! Inspiring!!

We hope to meet Mr. Mascheck when he returns to Hallettsville the following weekend to attend the annual golf tournament in honor of Zach, and thank him for what he does. We could not be more grateful, and honored that he chose to include Riley.

Deputy Mika, at your service...

Since there isn't much to report from the front lines of the Mika house...I'm going to continue "borrowing" posts from other blogs. This one is from Sweet Erin Buenger's mom, Vicki. Please read below, and help her if at all possible.

If you have not lived in a well for large stretches of the past month, you know that lawmakers are finally getting down to the business of discussing (and hopefully acting on) health care. I have have taken an unpaid position in Chet Edwards office for the summer researching health care insurance reform--in particular, the effect having or not having health insurance has on families that are dealing with diseases (interpret this broadly: it could mean rare or common illness and chronic or catastrophic illness, or accidents that require treatment).

Of all the things the Buengers had to worry about during the almost seven years that Erin was sick, insurance was not one of them. We never had to stretch the medicine that kept her from vomiting everywhere during chemo because we could only afford a limited number of doses. We never had to forego treatment or delay tests because a bureaucrat thought she knew something her doctors didn't. We never, ever made decisions about her health based on whether something was covered and something else wasn't. We didn't have to choose between paying our phone bill and our insurance premium. We didn't have to stay in jobs that stunk, or risk losing losing what coverage we had.

We were damned fortunate.

Having insurance didn't save Erin's life, but it sure made all the days before she died a lot easier and more enjoyable.

I would like to deputize each of you to help me collect information.

Let's start with some simple questions:

1. How does having or not having insurance affect your ability to get care?

2. How does having or not having insurance affect the rest of your family life--what trade offs do you have to make?

3. How does your child's illness and the availability of insurance affect your job status? Did you keep or lose your job? Did you have difficulty changing jobs?

4. What else would a reasonably informed person want to know about life style changes you had to make?

5. What changes to health care would help your family the most?

Please. No, let me try again. PLEASE help me.
How?

Send your answers to these question to me at ebuenger@suddenlink.net (It is Erin's e-mail. I am doing this for her because she could never stand the thought that sick children didn't get care.). You do not need to give me your personal information, although I would love to know your zip code. After you have e-mailed me, do one more teeny, tiny thing:
Ask your friends and relatives and facebook compadres and website followers and neighbors and pew sharers to do the same.
This is as serious as I have ever been about any request of you. This isn't political. I don't have a horse in this race in the sense that I am pushing a particular reform. I just want to know what it's like. If you have had a great experience (with or without insurance), let me know. If it has sucked for you, let me know. Let me know what works and what's broken.

Consider yourself deputized. Spread the word.

Be the Match

Once again, I am borrowing this info from Renee over at My Special K's...she is just so full of great information that I feel I need to pass on!!

From now until June 22, you can register to be a bone marrow donor for FREE!! You sign up online, and they will mail you the kit to do the actual cheek swabbing. It's that easy!! It would normally cost you $52 to register, but for this short time it is FREE!! So, go here and register...you could potentially help to save someone's life!!! It's so quick and painless...please go here and sign up for FREE, today!!

Thanks!!!!

Weekend pictures

I just happened to catch the "calm before the storm" in the picture below...things were about to get very bad!!

Hayden wasn't scared, though...he found it quite amusing

Look who was FINALLY able to have pigtails...

Finally...some love for our cancer cuties!

I "borrowed" the info below from Renee's blog...hope she doesn't mind! ;-) Yay for Childhood Cancer Awareness!!!!!!


FINALLY!!! All I can say is FINALLY! For YEARS we have seen PINK ribbons EVERYWHERE for Breast Cancer Awareness. It's a GREAT cause, but come on, there are other causes out there! And now we finally have one! And hopefully more to come! :)

Kensington, MD - Candlelighters Childhood Cancer Foundation is excited to announce the production of the first Gold Ribbon specially marked commercial product. Available now in your grocery store are specially marked boxes of Jel Sert's Fla-Vor-Ice. Fla-Vor-Ice was introduced by Jel Sert in 1969, and quickly became the leading freezer pop in the United States. The Jel Sert Company is proud to extend its corporate commitment to sponsor the Gold Ribbon for Childhood Cancer on its Fla-Vor-Ice products.
Jel Sert's Fla-Vor-Ice has delighted families for over 35 years with great tasting freezer bars made with 25% real fruit juice. Now proudly displayingthe gold ribbon for childhood cancer awareness, Fla-Vor-Ice is helping Candlelighters Childhood Cancer Foundation support our nation's littlest cancer patients.
To thank Jel Sert for their commitment to our nation's children with cancer,we are asking that you take a few minutes to thank the company. You can email them using the drop down at the bottom of the page here, or you can call them at: 800-323-2592.

Please let them know how thrilled we are that they have chosen to build awareness of this childhood cancer cause. We also encourage you to check out your local grocery stores and make sure that they are carrying the specially marked Fla-Vor-Ice product.

Finally, we would like to compile pictures of our children enjoying eating Fla-Vor-Ice. Please email any pictures that you have to Ruth Hoffman at:mailto: ruthihoffman@gmail.com. See our website for examples of two children who are excited to see the gold ribbon on the product!

Now that we have our FIRST specially marked gold ribbon product, let's work together to see more of them! If you have contacts to other company management, please contact Ruth so that we can let them know of Jel Sert's commitment, as well as work with them to discuss how their company can build awareness of childhood cancer too!

Together we can build awareness of childhood cancer!


Have a great weekend!! I know we will, because steroid week ends tomorrow morning!!!