I Did It!

I did it I ran my first ever 5k!! It felt great. There was so many people there that unfortunately I wasn't able to run the entire time, but still I did it in 40:10!! We are now planning on doing the Color Me Rad 5k in April!! I'm sure we will be adding some others in there before April too!
The pictures were taken after the race!


Amelia is doing pretty well, other than an occasional cold, she keeps trucking right a long. She started her growth hormones about a month ago, so we wait patiently to see some growth there! She also started on some Premarin...and OH Boy, what a difference that has made. We no longer walk on egg shells waiting for the beast to be unleashed (lol 😃) . She herself has even noticed the difference, now when she is moody it's because she is hungry or lack of sleep. Lack of sleep has definitely been her this weekend. She had a full weekend, Friday she had a friend over from her cheer squad, then Saturday she went to the church for girls night out and then last night she had another friend over ( I know it was a school night, but the mom had something to do). She has been loving going to and getting involved in the church youth group!
Marshall has been working, for about a month and a half at a McDonalds just about a mile and a half away. He is loving it.
Well that's about it for now, All is well!! For now we are living the busy "normal" life and......LOVING IT!!
Blessings to All!!

Breast Cancer Awareness

Please say a little prayer for me, tomorrow I'm running my first 5k ever. It's for the Susan G Komen breast cancer!
Thanks for your support!!

First Day of school

Wednesday was the first day of school for the kids!
For Amelia it was the first day of 7th grade.

For Nate it was the first day of 4th grade!
And one picture is of a proud Papa!! Lol

My Cheerleader!

I hope the pictures come out! These are some pictures of Amelia at cheer camp just a few weeks ago. They are from her show and shine day. One if them if you look closely you will see her being held up! That is not as high as she goes, she will get higher!

One year check up

Sorry its a bit late, but we have been crazy busy!
We had a week full of appointments in Minneapolis. We arrived on a Saturday night around 9, which is ok because it doesn't get dark until about 10! We finally found the place we were staying. We had a one bedroom apartment at an assisted living senior complex. It was rather nice and comfy. Plus it was super easy to get to the hospital, we were about 5 minutes away, didn't have to go on the interstate which is usually a night mare at rush hour times.
Sunday we went to the Mall of America, we ate and let her ride some rides, after we stopped at a Target to get some snacks and stuff we could cook in Microwave or the oven.
Monday we were at the clinic for our first appointment at 7:30.
She did her oral glucose test which was negative. We saw dermatology and what we suspected was right, her "rash" is indeed eczema. They gave her a bunch of creams, lotions and instructions.
During our week visit we had numerous X-rays and scans done. One scan showed that her bone age is 10.5 years, which isn't that bad but also gives her room for growth, which was another test that she had done, a growth stimulation test which is needed for insurance to get them to pay for growth hormones. On one of the X-rays we saw where she has the beginning of scoliosis, great more for the poor child! We saw Endocrinology there and found a lot of stuff out from them. Unfortunately we are having to wait a but to get into our local doctor. I was hoping to start her on some of he recommended medicines before school starts, because one of the things we found out is that she is in full blown menopause!! That explains the extreme mood swings and constant hot flashes!! Poor thing, we haven't even explained to her about her menstrual cycle yet, we figured let's get over BMT first then we'll start that talk. Now I don't know how to have this talk with her. I think I'm just going to leave it alone for a year start her on the hormones then next years check up we will talk to her and give her the medicine to force her to have a menstrual cycle... 13 is a good age to start, heck she's been through enough already. We also found out at that visit that she needs some vitamin D, so we have started that pill.
ENT was a good check up, pulmonary function test was much better this year than last, what a difference a HGB of 12.5 makes compared to 5!! Biopsy went well, don't have all the results but she is still 100% donor making all three cell lines. Her only count that is a little low is her IGG, which is one that is part of the immune system and helps fight infections and viruses, but Dr Wagner said we won't worry about it unless she starts to get sick a lot with colds and stuff. Which thankfully, she hasn't had a lot of and it's been low for a while now. Marshall gets an infusion once a month because his is low, but if he doesn't get his he gets sick. (he's almost 9 years post transplant)
We started her vaccinations just this week. She was scheduled to get 7 shots, they broke it up for her (thankfully we don't live but 7 miles from the pediatrician) two she got Tuesday, two more today and 3 next Thursday. Then she gets another 7 at the end of August. Then she won't have to do them but one more time, I think a year later.
She is getting excited because cheer camp will be starting on the week of the 9th. Then believe it or not school will be starting for them on the 8th of August. Still have so many dr visits I'm trying to fit in, dentist, orthopedic, and the shots all while trying to let her have summer fun since she missed it all last year!!
We did make it to a day at the beach, it was ok, they really hadn't been in a long while and both she and Nathan now have no desire to go back...they hated the salt water and they hated the sand every where! So we will stick to nice clean pools!!
Well have to run to get them up and dressed for more shots. Hopefully it won't be so long between updates!
Thanks to those of you who do still stop in a check on us, if there is even anyone doing so! Thank you for keeping Amelia in your prayers, we are ready for the next chapter in her life... Living post bone marrow transplant, one with a little less restrictions!
Blessings!!!!
Kelly

12 years!!

Happy, happy birthday to my beautiful wonderful little girl!! Happy birthday Amelia, we love you more than words can say. A day we were in fear of not reaching, we are here and we are celebrating and praying for MANY, many more!!
Love 4-ever,
Your very proud mommy and daddy!!!

A Year.....

A lot has changed in a year....
 A year ago today we sat in a hospital room waiting patiently for new cells to come and save my little girls life....
A year ago today we were filled with anticipation, hope, and mostly fear. Fear of the unknown and of what was to be in the days to come. We prayed, for Amelia to be safe and for the donors recovery. The emotions of that day are still there, yet very hard to describe them. Having been through it twice you would think that it would be easy to describe. I hope and pray that somewhere overseas that the donor knows how grateful we are for what they have done for us and will always be apart of our lives. The donor will be remembered as Amelia marks every milestone in her life be it big or small, because no matter she would not have been able to reach any of them had it not been for the amazing donation of their marrow. In the past year we have already begun to be thank for the donor's donation. Amelia has done remarkably well well since we have returned home, we had a bump or two but just a few! Her health has been unbelievably well. Her counts have all returned to normal.She just finished up her 6th grade year of school where she was on the honor roll all 4 nine weeks a big accomplishment for her. In the past years her health played a big part in her grades, her hemoglobin was too low sometimes for her to even think straight, or have the energy to finish out the school day. Now her energy levels are soaring and so are her grades!Next school year she herself will be soaring, literally speaking as she made the schools cheerleading team, and since she is the smallest and lightest she will be......gulp....a flyer as they call them! (also another milestone that we thanked her donor for) Today Amelia is a "normal" preteen girl, healthy and happy (for the most part considering she is a preteen!!She will celebrate her 12th birthday on June 7th. Her hair is growing back very slowly, but very thick and curly, which of course she hates. Today is her last day to take her transplant related pills with is her bactrium! She takes prescription claratin for her eczema that she has acquired thanks to transplant and he synthroid. We do not like to mention the ugly monster that caused her so much pain and that brought her back into the hospital and that happened to rear its ugly head in January...lets just say her urine has been all clear! She is an amazingly tough cookie, she has lots of spunk and more than enough attitude. I know it will be a long a boring summer for her. She was just getting back to school full time and it all ended, she is extremely sad, but next year, thanks to her donor is fill with anticipation and loads and loads of hope. A new chapter in her life is beginning. Here is a look back through pictures at the past year.....
Here she is on the trip to Minneapolis...

This is Amelia on the car ride to Minneapolis.

Here she is one one of her work up appointments.

Here she is taking control of her hair falling out! She was very brave and made me take her to get it all shaved off, a sad day for me to watch as she was so brave.

Amelia and her brother on transplant day.

Here you can see her cheeks puffy due to an infection in them.

one her first day pass after being in the hospital for more than 45 days

getting stronger and out of the hospital! On a trip to the clinic!

Home, finally, with her beloved doggy Chico!

Even meeting movie stars while being an extra!

On set filming a Make~A~Wish commercial!

Firstday back at school in over a year!

hair growing in !

end of school dance

And what she does best, faces and swimming!

I know this last year has been tough, we made it through the hurdles. The road is still a long one ahead of us, but you are even stronger now. The C word...dreaded Cancer, will always be breathing down our necks but we plan to stay one step ahead of it!
For all of you following us, I thank you all for coming on this journey with us and for being there every step of the way! Your support, thoughts and prayers really mean a lot to us. Everyday is a precious girt, take a moment and enjoy what you have and be thankful! I know I truly am, I am very thankful and blessed. Not one but two strangers gave a piece of their selves to me, if for not them I would not be blessed with two miracle kids!!!
Have a great weekend.
Blessings and love,
The Bennett Family
Kelly, Tyren, Marshall, Amelia, and Nathan

oh and Chico and CoCo too!

$2 for $2 Million

I'm asking that if you are reading this post to please take a minute and go to the link below and donate $2 in honor of Marshall and Amelia Bennett. This is for Fanconi Anemia, the disease that my children suffer from. Yest they have had a bone marrow transplant but their journey with FA is far from over! We much watch them both closely for cancer. Research is our only hope for a cure for them and the others that suffer from this disease. Please help if you can! click here to go to Fanconi Anemia

Again goto http://www.fanconi.org/index.php/donate Thanks, Kelly

Testing...

Picture of Marshall many moons ago in Wisconsin!

Life....

WOW, I can't believe how life is just whizzing by. I feel like I am standing in the middle and the world is just spinning around me. Time is flying by... See it wasn't that long ago that I was holding this and dreaming about the day that he gets older...

But in a blink of an eye he went to this...

And last Wednesday night he was doing this....

Yep it's official! He did it he walked across that stage and is finished with school! As for Amelia she is wrapping up the school year. She was just getting back settled in to a school routine and now its time for her to stop going, she isn't that happy about it! When school start back up she will be in......7th grade, can you believe that...where oh where did the time go?? Nate well he is starting to shut down. He is ready for school to be over and I can't believe that he will be in the 4th grade. My babies are growing up so fast...yep like I said...I feel as if I'm standing still and they are running around me in fast motion and all I want to do is yell slow down!! Amelia is doing great health wise, we travel back to Minneapolis on the 9th of June to start a week worth of appointments. Gotta run help with home work. Blessings, Kelly

Alleluia, Alleluia.....AL LE LU IA!!!!!!

We are singing here loud and proud!! The local doctor here finally got on the same page as the doctor in Minnesota. Last Thursday we went for Amelia to give blood for a CD4 test that needed to be above 100 in order for her to go back to school. Well we got the results on Monday and they were well over 200....so guess who went back to school on Thursday.......

This smiling beautiful girl!!! Also guess who tried out for the junior High Cheerleading team and made it....this beautiful smiling girl!!!


God is AWESOME!! hard to believe where she was just 10 short months ago.....

Busy, busy.....busy.....

Greeting Friends...
it's been a while since I have last updated. Things are still rolling right along. We have had lots of doctor visits over the last few days/weeks and a few to go, but they are NOT for Amelia and that is a great thing. We went Tuesday to the hematologist for Amelia.....We all could not be more pleased with her and how well she is doing. Her counts on Tuesday were WBC: 3.8, HGB: 13.2 and her platelets were 114. I have to call on Monday to get her IGg levels, praying that they are above 400! The issue of school also came up again and we asked, WHEN! Our local doctor said he wanted to give the docs in Minneapolis a call and get there thoughts on this too. He said since he wasn't the only doc taking care of her he wanted to see what they thought. I pray that I here from them before our next appointment which is on April 10th, she really needs to be back in school around kids her own age and her friends. Please say a little prayer that she will make it back there before the end of this month!!!! Here is a picture of her hair, it is growing back so nicely and when she lets me fix it, it is really REALLY cute!


The other doctors that we have been visiting are for Marshall and Ty. Marshall went and had more cell's remove from a precancerous mole about two weeks ago. Tuesday we go back to have the stitches removed. He also needs to see the eye doctor on Friday and then IVIG the following Tuesday and then the Tuesday after that he will be going to a GI doctor to check on his gallbladder and acid reflux. They think more than likely he will need his gallbladder taken out. I know that it is usually a quick and easy procedure now a days, but if he needs it out I think I will wait till the summer when he is out of school and I have more time on my hands....
Ty also had eye surgery on Thursday, he had a lazy eye that was getting worse and making it harder for him to see. So Thursday they went in and tightened the one muscle and on the other side they had to loosen the muscle. Lets just say he is not a happy camper. He is hurting and the eyes are burning and feel like they have tons of sand in there. I have a few pictures, they aren't the best because I couldn't get his eyes to open anymore than they are with out them causing him a lot of pain

Here it is before the surgery, this picture is not as bad as it really was.






So that is what we have been up too around here. Hope to be back soon with more to update on!

Blessings and thanks for checking in on us and thanks for keeping us all in your prayers!

Finally....

OK here it is, I had planned on doing this update late last week, but then we found out that our friend Sammy was not given much time to live as his leukemia had returned, very sad and heart breaking. Sammy gained his angle wings on Saturday. Please keep his parents in your prayers, they are amazing people!

So here is our little update. Amelia has been doing really well, she will be 9 months post transplant next week on the 27th. her counts are doing fairly well too. She is bored and wanting her counts to be high enough for her to be able to go back to school for at least half days, in secrete I want that for her too! she needs the socialization...she is a little butterfly. Her doctor here is extremely cautious, Amelia would say a little too Cautious!! She is planning on trying out for cheer leader at the end of March.

On the health front, Marshall has been leading the pack! He has an ear infection, and it doesn't want to clear up so we will be making an appointment with the ENT. He went to the dermatologist and had two moles removed and one of them came back precancerous, so next week he will go back and they will have to cut more cells out. We will need to check them out regularly now. He has also been having some issues with his liver levels coming back elevated, so we went to the hem/oc. He is sending us to a GI doctor. Marshall had an ultrasound of the abdomen and his gallbladder is still full of gallstones. They have been there since after transplant and for a few years it would flare up, but it hasn't flared up in pain since some time in 2006. I guess we will see what the GI doctor says. The hem/oc doctor feel that it is causing the increase in the liver functions test, so they are thinking that it will need to be removed. We will see in the upcoming weeks. We also have to go back to having his IVIG done monthly.
Ty will be having eye surgery one March 8th. They will be tightening his left eye muscle so it won't be wondering!
So there is a lot going on, so we will be very busy over the next few weeks!
Here are a few pictures of Amelia's hair it is getting thick and very curly! I will have to get one of how it is normally, there are from a day i talked her in to letting me use the flat iron on it




Well gotta run early day tomorrow as it is Mardi Gras here and I am going to take the kids to the parade for a little while tomorrow!!
Hopefully I will try to update of just plain ole blog a little more often!!
Blessings!!
Kelly

Update coming soon I promise!!

Is there really anyone out there who still even reads this? Well if you do I will be doing an update soon.... But would like to introduce you to the newest member of our family.......

Meet CoCo....

She is an 8 week old Yorkie and she is adorable!!!

Caps For Kids

OK so most of you have heard of Caps For Kids. Well if you haven't, you can read about it here Caps For Kids. What most of us know is that our kids pay a $1 to wear their favorite hat to school on a designated day, which is true. They also look for kids with terminal illnesses to honor with a signed cap from some one famous. Well Miss Amelia was nominated and chosen to be honored with a cap of her choice. Her first choice was Selena Gomez, but unfortunately they didn't have one by her, but they said they would work on getting her one signed by her. Since this was on a Monday that she chose and she was getting it on Thursday she went with a second choice that they had in stock. Here she is at the school board meeting waiting.



Here are the people from Caps For Kids! Super nice too I might add.

This is her principle presenting her hat to her!






and here is her cap! She watches/watched NCIS a lot with her papaw, especially during transplant and this is her absolute favorite character on the show.......

Pauley Perrette!!
She was super excited about it and has been showing off her hat all over! SHE LOVES IT!!

We had clinic on Monday and everything is still moving in the right direction. Counts are still doing awesome and we have one more week till we are completely off the CSA!! She should finish it up on Jan 26th (her daddy's Birthday). Then in a month after that we will test her immunity counts again and if they are good enough she will go back to school in March for half days.

Thanks for the Prayers...

Thanks every one for the prayers! Amelia is doing much better and thankfully it only lasted a day and a half. She did not have to be put in the hospital. We went to the clinic and saw the doctor and if she wasn't doing better by 5 she was going to the hospital. She had a clot that was stuck in the urethra tube that she was able to finally pass it and pee all on her own. Thankfully it passed and we went home that evening drinking a water bottle full of water every hour and half till bed time. Friday we went back for an ultrasound of the bladder and thankfully it was all clear. I am praying that it will stay that way for ever and that this stupid stuff NEVER rears it's ugly head again! Her counts are great, her hemoglobin is 12.7 and platelets are 138 and white cells were in the 4 point something. We will return to clinic on Jan 16th and she only has two weeks left to go on her immune suppressing medicine and then we will check to see how her immune system is doing and if it is better she will return to school for half days in the mornings. I think she is looking forward to doing this!
Again thanks so much for your prayers! She is a very tough cookie and keeps trucking a long!
Blessings,
Kelly

Welcome to the flipping New Year

Prayers, please! We are headed to the hospital with Amelia!! After 3 and half months with no blood, guess what reared it's ugly head again!!! Yep she is having blood in her urine and clots, we are all devastated. Please say a prayer or two for her! No body knows why this is happening! All I can do is beg for prayers!!!