December 2011

Dear Family and Friends

Merry Christmas!!!

I can't thank you enough for all the prayers and support that you keep sending us. The emails that I get are so encouraging and I just want to say that if you think of us please continue to write me and tell me about it. I will never be able to express how amazing and uplifting it is and those little messages always come on the worst days and help me get through it all. Sometimes it is hard to express on the blog how I feel on those days but I always seem to get a message or a phone call at just the right time to get me through it.

Christmas is in two days and I have never felt more blessed. This has been an amazing year with such big battles but such HUGE VICTORIES!!


God blesses us daily with our two beautiful children

Ben is a constant joy. His little tender heart is so sincere and so machure. It made me sad in the beginning because I felt like Cancer made him grow up too fast, too soon. But truthfully God is showing me daily that through his Grace he is protecting Ben in all the right ways and strengthening him in all the right ways too. He is a tough kid with a sweet and gentle spirit. He is filled with such a special compassion and understanding that will only make him a wonderful man someday. My biggest joy this whole year was when Ben made the decision to accept Jesus as his Saviour. Matt and I reinforce this daily for him and I am excited to see what this coming year will bring him. I pray that we will be able to go to church more regularly this year because I want to watch my children grow in the Lord. Ben was dealing with a little bit of a temper, but I am so proud of him because he very quickly has learned to control it even when he is extremely angry. It is very important to him to control it because we have talked about how Jesus feels about that. Ben is still madly in love with his trains and can't wait for his birthday because he knows he will be able to start the boy scouts! This is a big deal to him and he asks me everyday "How many days to my Birthday?" (142 hahaha). Please keep faithfully praying for him to continue to stay in remission and Praise the Lord once again that he is now in a safe place with his treatment and being cared for by a wonderful team of medical providers at Cincinnati Children's that care for him and love him.

Olivia is a NUT. She is full of endless energy and a wild spirit. Matt and I are challenged daily into teaching and guiding her into harnessing this wonderful energy and spirit to become a strong woman of God. She is fearless, competitive and confident. I know that as long as Jesus keeps helping us on a daily basis she will grow to be a fabulous light shining for the Lord. Olivia loves her brother with all her heart. She annoys him like crazy, but she loves him dearly. They are best friends and I hope it stays that way. She is a strong influence on her quiet brother and keeps him on his toes and teaches him that he has a voice and can be strong. Ben teaches her to be sensitive and to think before she acts. They are a good team and it is my prayer that God will keep them friends for life so they can lean on each other forever.

Matt and Me

Matt is doing well. He also remains in remission! Praise the Lord!! He is my wonderful friend and I love him dearly. I am excited for the coming year and what it means for Matt. He is in the process of applying for a Fire Department here and the outcome looks great. He is a great strength to our family and keeps me going when I feel like I can't go any farther and he supports me in my hobbies and endeavors. We have begun taking our ballroom dance lessons again. It have been over two years since we have gone and that one night a week that we go is a great time for the two of us to enjoy each other and learn to dance together. We are both enjoying Louisville, but at the same time miss our families. We have made some lifelong friendships, have found a wonderful church that we love and can't wait to be able to go on a more regular basis. We really love our new Pastor and feel that we are growing so much each time we hear him teach. The people at this church took us in, they pray for us and they teach us. We both feel like we have been at this church much longer than we have and we know that the Lord hand-picked it for us.



I finished my quilt this year that was two years in the making. It was recently raffled of to support my favorite non-profit organization Global Health Training
I was blessed that so many people got involved and we were able to raise over $2100.00 for this wonderful organization. As I said above Matt and I started taking dance again and I couldn't be happier. For me it is the best date night we could have. I love the exercise and enjoy the time with my hubby who is a wonderful dancer. I feel that God is doing so many amazing things in my life and is really using this time during Ben's treatment to His purpose. I am in the process of undertaking a giant step towards advocacy of patients rights to expect better treatment and care for the children and families at Ben's previous treatment Center. God is daily opening amazing doors for this to happen. I am regularly meeting all the "right" people in all the "right" positions who can help make positive changes. And on the days when I feel tired or that I just don't know if I can make a difference the Lord sends me someone whether it be another parent who asks me to keep fighting or even the most recent was yet another Doctor who has completely backed me up and is getting me in touch with more physicians who want to bring the head Doctor of this clinic out of the controlling position he has in the Oncology clinic here in Louisville. It is a slow process but at least this process will bring about necessary changes. I can only pray that God will continue to open doors and bring me to the right places to meet people who can make the difference that is so greatly needed.

And with all that I want to say one more time. THANK YOU for making 2011 a great year for us. We never would have had the time we did without all the prayers that you have sent up. Please continue to pray for us and the families that we have met this last year who also have kids battling Leukemia and other forms of Cancer. There is strength in numbers especially in prayer.

Love Jamie

Doing Better!!

Thank you everyone for all your prayers this last week. We made it safely home on Tuesday night with Ben. He was very, very tired but happy to be home. The rest of the week has been pretty mellow. Ben has been very tired at the end of the day so he has slept quite a bit this week. He also started his Steroid treatment on Tuesday night so he has been VERY hungry. I had off this weekend and monday too so we were able to take my neice this weekend. We are having a blast with Cousin Savanna and we are going to be doing some Gingerbread houses with the girls and Ben will do a Gingerbread train(he is so excited).

Thanks again and we love you all!

Jamie

Tuesday Morning

Ben is doing well this morning. I had a hard time getting him to sleep last night. He is still turned around from being up until 4am on Monday morning plus not really doing anything really active yesterday. He did not go to sleep until 1am this morning. He asked for Zofran last night saying his tummy was hurting and had some more benzocaine drops in his ear for pain.
The Dr. came in at about 3am to check Ben's stool. The nurses were alarmed because it was bright red and thought it was blood. They are testing to be sure but it looks like it is a side effect of lots of Gatorade yesterday. As long as those tests come back negative for blood then we will be released this evening. Matt will come and pick us up after he gets off work tomorrow. Ben was supposed to have his clinic visit tomorrow afternoon but they are going to give him treatment today while he is here so that we don't have to make the trip tomorrow.
Thanks for all your prayers. Please continue to pray for us because Olivia caught the 24 hour stomach flu that Matt and I had last week. She is doing fine now and got through it okay. Please pray that Ben will not get it because it would probably mean we have to come back up here to Cincinnati.

I love you all and will keep you updated. Ben says Merry Christmas!!!!

Love
Jamie

How a Germa-Phobic Mother Takes A Shower at the Hospital

Step 1. As many clean towels from the nursing staff you can get (NO Ten is not too many!!), and a Trash Bag for dirty laundry, and two washcloths(in addition to the one to wash with).

Step 2. Drape a clean towel over the sink so you have a clean surface for your clean clothes.

Step 3. Place several clean towels in two layers as a floor mat by the shower entrance making sure to be able to reach the sink from these towels.

Step 4. Untie shoes and pull tongues out for easy entry.

Step 5. Carefully place dirty laundry into trash bag taking care not to drop anything on the bathroom floor. Keep in mind if you do you can always bleach it (if not bleachable, burning is always an option). Remember when removing socks to step onto the towels and not directly onto the floor with your bare feet.

Step 6. Use one of the washcloths to turn on the shower. Take extreme care not to touch the walls or showerhead of the shower.

Step 7. When exiting the shower stand on one foot and clean raised foot with soap stepping that foot onto the clean towels then just as carefully repeat with other foot.

Step 8. Put on all your clothes and finally slip into your shoes all while never touching the bathroom floor. Use second washcloth to turn off shower and kick all dirty towels and washcloths into the corner on the floor.

Step 8. Wash hands, exit bathroom, sit down, sigh and say a prayer that the TOWELS were truly clean.

At the hospital

The last couple of months have been going by like a whirlwind and I could not believe when I logged in today that it has been since August that I last blogged about Ben.

First I will briefly fill you all in on the last few months. In September we started the beginning of Ben's homeschooling. We have stayed fast in our decision to keep him at home during his time of treatment. He is learning fast and is showing us a hunger and love for learning. October and November went by pretty uneventful. We spent Thanksgiving home with just the four of us. The kids really enjoyed themselves and we have already set up our Christmas tree. Ben and Olivia seemed to love decorating the Christmas tree more than anything else they have ever gotten to do. It was our first year that we weren't gone almost the entire holiday season so it was their first tree at home. Needless to say they are enjoying Christmas at home this year.

Last night at about 7:00 I had to call Ben's Oncologist up in Cincinnati. Ben was having extreme ear pain and a slight fever of 99.9. This is not actually considered a fever, but coupled with the ear pain they wanted us to go to the emergency room. We took him to the local E.R. by our house and they started him on two different anti-biotics. They also took his blood to begin cultures to look for infection and to check his ANC. His labs came back and his ANC was 90. Anything under 500 is called neutropenic and he was taken by ambulance to Cincinnati Children's. We got here at C.C. at about 2:30am and were admitted. They re-drew labs this morning at about 4am and his ANC had risen to 230. Dr. Hammill said that as long as his counts stay on an upward trend AND he stays without fever we can go home as soon as tomorrow evening. Ben was scheduled to have his next clinic visit on Wednesday AM so now we are doing it tomorrow so we do not have to make an extra trip up here.
At the local emergency room I was able to meet a new doctor that we had not met before. He was a wonderful man and after hearing about our troubles at the previous clinic and the way we were treated really encouraged me to continue to find ways of making public the way we were personally and medically treated. He gave me some great advice on how to take the next steps to ensure that Ben is the last child to be treated badly at that clinic. We praise the Lord daily that he saved us from that situation and praise Him yet again that he continues to bring people in our path who only want to better the treatment and the current staff at the oncology facilities in Louisville. Until then we are safely being cared for by some of the best staff in the nation. Ben loves being here, although we are both ready to be home tomorrow and get back to our normal activities.

Here is were I have saved the best for last. On November 21st in the warmth and comfort of our humble little apartment Benjamin accepted Jesus as his Lord and Saviour. I am so joyful for him and he is so happy about his decision. We are working hard to constantly confirm to him how supportive and excited we are about his "Big Boy" decision. He started the conversation with his constant wondering about heaven and death. Matt and I are rejoicing in the Lord and are very comforted by this. Ben is already sharing the "Good News" with his sister although it mostly is misunderstood by her. We will continue to teach and share with her and we know the Lord will bring her into his flock too!!

We Love you All

Jamie