January 15, 2013 Leave a comment

WOW! Has it really been a year since I have posted on our blog. Things have been Caaarrazy here in my world, but that’s okay because my baby is healthy! Maelee is doing great and continues to do great. We still go to clinic to check in twice a year. Maelee will have a bone marrow biopsy during our next visit in April to see how things are going in there. She is loving first grade and excelling in her school work. She is so eager to learn and loves going to school. Even though times are still tough and we have our difficulties, we are so blessed to have a happy and healthy little girl. 

I will try to post again soon. I just wanted to let everyone that follows this blog know how well our Maelee is doing. 

Clinic day #53 (Counting my Blessings)

January 18, 2012 1 comment
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My Christmas Cuties!

I know it has been a while since my last post. Our clinic visits have spread out a good bit since Maelee’s platelets have been slowly rising. I am so happy to report that today Maelee had the best CBC results EVER!!

Her platelets jumped up to 233,000! Her WBC is 7.88, RBC is 4.59, HGB is 13.4, HCT is 38.8 and her ANC is 3240. Maelee’s CBC results are normal.

The doctor was very happy with the big rise in her platelets (so was I). We are in a monitoring phase at the moment. Maelee will have another bone marrow biopsy in April. We will see what those results are and then we will talk about having her port removed.

In the meantime, the girls 6th birthday comes up in March and I have some planning to do. I hope the holidays were good to everybody and I wish you all a wonderful 2012!

Clinic day #52

November 9, 2011 1 comment

It has been a long time folks. Eight weeks, to be exact, since the last time we were at clinic. That’s years in Hematology/Oncology world. It has been a wonderful break and mostly stress-free, except for this past week and ESPECIALLY today. Over this past couple of months Maelee has looked great and felt great. Until I noticed her looking a little pale this past week, and this morning I found a BRUISE! Now, before September 9th, 2011 that bruise would not have even made me think twice, but post 9/9/11 that bruise makes my heart skip a beat! Our appointment was not until 1:00pm, so I have been stressing all day long.

Maelee still has her port in and it was time for a flush, so she was accessed today. Her results came back and they were GOOD! Her platelets are … wait for it … 105,000!!!! Amazing!

Phew! That was a relief. Her White blood cells are 5.44, Red blood cells are 4.05, Hemoglobin are 12.0, Hematocrit are 34.7 and Neutrophils are 1610. Overall, very good. Our doctor has been trying to research cases like Maelee’s, unable to find any. He did find some cases of people getting better from AA on their own, without treatment. In a lot of those cases AA never returns . However, patients usually get better within 60 days of symptoms showing and their numbers jump up quickly. Maelee started showing improvement in about May (8 months after diagnosis) and has been slowly going up each visit. So, the doctor said that he is going to do a bone marrow biopsy, yearly, to keep an eye out for any abnormalities. If something shows up he can catch it early and patients do better with a bone marrow transplant if you catch it early.

It never ends.

As I said before, I will take this one day at a time and cherish each day given to me. This is all I can do. Our next appointment is in middle January.

Thank you all for your prayers and kind,sweet words! It means so much to me and I KNOW it helps Maelee. The power of prayer is quite AMAZING! 

Clinic day #50 & 51

August 17, 2011 3 comments

Well, as you can see I missed updating my blog the last time we went to clinic so I figured I would combine the two. Our clinic days are getting fewer and farther between and life at our house has been really busy.

So we went to clinic today and Maelee had to have her port flushed. She fought with us while putting it in but she was very calm and actually helped the nurse take it out. I was so proud of her! We got her results back and her platelets went up from 68,000 to 77,000 in 3 weeks! They are taking their own sweet time but they are going in the right direction and I am SO HAPPY!!! All of her other numbers are in their normal ranges!! You can check out the specifics here at Maelee’s CBC results. It was a very good day today. We asked our doctor about when or if we could possibly take Maelee’s port out. He said he wanted her to get to at least 100,000 platelets and stay there for a bit before he does that. If he tried to take the port out right now they would have to give her a platelet transfusion before they would do the surgery. He also gave us the okay to let her play soccer. He even said we may get to a point of coming to clinic every 3 or so months!

I want to thank everyone so much for praying for Maelee. I know your prayer has helped us and my baby is healing inside!! Thank you all and bless you all!

Maelee’s Army – Gift of Life Bone Marrow Foundation

August 16, 2011 Leave a comment

Maelee’s Army – Gift of Life Bone Marrow Foundation.

I am involved as a volunteer ambassador spreading the word for an organization very near and dear to my heart called Gift of Life. They run an international bone marrow donor registry that helps men, women and children suffering from diseases such as leukemia and lymphoma find matching donors for bone marrow transplants. One in 1,000 of the donors in the Gift of Life registry actually help save a life each and every year!

Recently, Gift of Life started an initiative called the ‘Donor Circle’, and I have created Maelee’s Army that I would like you to join. My Donor Circle enables me to grow the bank by registering with a simple cheek swab. Even if you are not eligible to become a donor, you can still become a member of my Donor Circle to show that you support me in my efforts!

As of right now there are 13,050 donor kits on the waiting list for funding so that they can be processed. If you have extra to give please consider giving to the gift of life so that we can bring this  number down to ZERO!!

So please join Maelee’s Army by clicking here.

My goal is a match for anyone in need, whenever they need one.

First day of school

August 14, 2011 Leave a comment

Okay, so I am a week late with this post. That’s the story of my life. Always late. A lot has been going on getting ready for the girls first day of school.

 

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The girls went to school on the first day (just girls) so that they could have a princess party and get some special time with the teacher. Here are my princesses on their first day! They were so excited. The next day they got to stay home while the boys went in to school to get their special time with the teacher and then on Wednesday all the kids went to school. Thursday came and 2 of my girls started complaining of sore throats! Friday morning came and Maelee looked awful. She said she felt too bad to go to school. So Emalee went on and Maelee stayed home. So, this is our first test … can her immune system fight it?? Friday evening we took her temp and her highest reading was 100.9!! I was a little worried. We kept an eye on her. All of the girls have runny noses and scratchy throats. I have been keeping their noses moistened with saline and we run the humidifier all day and night. Maelee walks around the house with her kleenex on her nose (constantly). I break out the vaseline for the red nose hoping it won’t get too raw. Her fever went away Friday night and never returned. Runny noses all weekend but it looks like Maelee will be able to go back to school on Monday. I think we have passed our first test!!

 

 

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Love this smile!!!

We go back to clinic on Wednesday to see where her numbers are. She looks good right now so I am optimistic. Until then we will have our routine; school, then home, snack, supper, bath and then bed. I love it!

Eli Lana

This is our friend Eli. I met Eli’s mom online while looking for people that I could relate to that are also dealing with Aplastic Anemia. Eli has Fanconi’s Anemia. This is a very rare blood disorder. It could use as many supporters as possible. If you would like to donate you can go to http://www.fanconi.org/index.php/donate or http://www.kidz1stfund.com/donate-now.html 

Eli is a super hero! As you can see he is a member of “Maelee’s Army” and we are his “Storm troopers”! Thanks Eli for showing Maelee some love Smile 

Special blood drive in honor of Maelee and Clay

July 20, 2011 Leave a comment

Special blood drive in honor of Maelee and Clay.

They did a feature on CBS 42 News about our blood drive this weekend. My husband Trent is on it along with Emalee and Maelee. I was smart … I managed to stay away from the camera 🙂 If you are in our area please come by and donate or join the registry.