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

This Last Week

To everyone who knew that we were having trouble this week thank you so much for your prayers and encouragement. To those who had no idea what was going on just the fact that I knew we have so many daily prayer warriors who are always thinking of us and praying for us I felt so encouraged from it!!
I will give you the good news first. We are officially now switched to Cincinnati Children's Hospital and I couldn't be happier. This news came the last tuesday which to me is just a the Lord blessing us because Ben got sick the same day and we did not have to call the old clinic and deal with them with all our uncertainties there.
Last tuesday Ben was not feeling well and by Wednesday morning he was running a temperature. Matt took Ben to the pediatric emergency room nearby. They drew Ben's blood for cultures and also ran cultures on his urine. They did an X-ray to check his lungs as well. They also checked for Strep A and Strep B. The Xray and the Strep A came back immediately negative but the rest were cultures and we had to wait 48 hours for results. They gave Ben Recephon which is a pretty strong antibiotic and gave orders for him to follow up Thursday and Friday for more Recephon.
On Wednesday night Ben's fever spiked again but because he had been checked out and as of Wednesday am his ANC was 2086 they allowed us to keep him home and give him tylenol. He went back to the ER for his antibiotic on Thursday and had no fevers again until Thursday night when they spiked again. On friday morning he went back for the final shot of Recephon and then went home. On Friday night his fever spiked again so we called and the Doctor said to take him in on saturday morning to have his ANC checked again. Matt took Ben in on Saturday and his ANC came back 411. He was taken to Cincinnati by ambulance and we got there mid-afternoon. They reran the blood and urine cultures and performed another xray. His ANC at Cincinnati was 550. This difference of ANC was the difference between manual and automatic deciphering of his counts. They admitted Ben and gave him a stronger anitbiotic called Zosyn. This antibiotic is what they use when a patient iss Neutropenic (low ANC) it attacks gram-negative bacteria better then Recephon. On Sunday morning Ben had made it through the night with no fever but his counts had dropped to 430 so they decided that he could go home on Monday as long as he didn't have anymore fevers and as long as the next CBCs they checked were increasing. So we spent all of Sunday hanging out. Matt went home Sunday afternoon because he had to work. I was blessed by my co-worker and buddy Alex, who switched days with me so I didn't have to worry about missing work. Thanks Alex!!! Ben and I got to hang out all day and we actually had a lot of fun. He was really tired though and took a long nap late in the afternoon which meant he didn't go to sleep until 1:00am. I still am laughing over it because I started falling asleep next to him and he kept waking me up saying "Mom your missing the Thomas movie and it's the best one I have ever seen!!!"
On monday we went over everything with the doctors and Ben's counts were 470 and he didn't have anymore fevers so they sent us home. They discharged us and Ben and I hung out until Matt came to get us.
Today Ben is feeling great and we go back to check his ANC tomorrow just to ensure that he is still doing good. He is a little more tired than normal but he is doing really good. Next week is Ben's appoinment for his Spinal Tap at Cincinnati.

On a happy note we are so wonderfully pleased with Cincinnati. Just from this visit they have given us so much help and it has been so nice to be treated with kindness and love instead of the hatred and disrespect that we have had to deal with for so long. He even told one of the Doctors "Thank you for saying my name instead of 'the patient'. Ben had a great time and instead of being quiet and not talking and being terrified of his Doctors he was my sweet talkative little boy at Cincinnati. He was even cracking jokes to the Doctors and laughing with the nurses. He wouldn't even leave the hospital without kissing and hugging his nurses goodbye. It was such an answer to prayer to see him doing so much better and not having such a horrible time.
He has gone through so much and I am so happy that he is in a better place now.

I am going to end this with Ben's joke to the Doctor "What did one Snowman say to the other Snowman?-----Smells like Carrots!!!


Love you

We need prayer!

It has been a very trying 6 weeks and I am so thankful for all the prayer that I know has been going up for us. On my last post in May I said that they were beginning the process of increasing Ben's Chemo to try to bring his counts down. May's appoinment & increase brought Ben to what is considered 100% meds. So his June appointment is when they actually increased his meds above 100%.
We have become very concerned with the treatment that Ben's current oncologist has been providing. We know now that this Doctor is not treating Ben with the "Standard Protocol". Not only are we finding out from our resources at Phoenix Children's, St. Jude's, and Cincinnati Children's that the necessary changes are being done in the wrong time frame but also that the medications are not being adjusted properly. I started the very stressful and tedious process of getting Ben moved to Cincinnati Children's Hospital which is about one hour and forty-five minutes north of us. We have to jump through a lot of hoops to get him moved because of his Medicaid. This is part of the reason I have been unable to post anything. I feel like every waking moment that I have has been spent on the phone with Medicaid, hospital administrators, the chairman of pediatrics for Kentucky. My dad even spent a whole day on the phone working his way up through the department of health and family services to help get Ben moved away from this Monster of a doctor.
I am asking for you to please pray for Ben, pray for the Lord to continue to guide us to getting him the best care, pray that the Lord will heal any damage that this Doctor's mistakes have caused. Please also pray for the other children in this man's care. The choices that are being made are not little mistakes and I pray that the Lord would protect anyone under his care.
I also would ask for prayer for me. Pray for strength, prayers for understanding, and prayers for wisdom. I know the Lord is with me every step of the way and not just because of my faith but because of yours. Your prayers and your support are felt every day by us and it keeps me strong in my faith in the Lord to know so many others are so faithfully involved.

Love Jamie

Ben's last appointment was last week on wednesday. He had a spinal tap and chemo injected into his spinal fluid. The tests came back negative and we can only praise the Lord once again that he is keeping Ben so healthy. They have started the process of making changes to increase Ben's Chemo Therapy. The Doctor has told us that Ben's ANCs are too high and this will keep the Chemo drugs from doing there job to eliminate the cancer cells. They have assured us that adjustments like this are normal and very neccessary. Some children have to have their meds decreased and some increased to keep them in the right place. Ben will have to have his CBCs done weekly now so we will be making a few more trips to the Doctor in the month then we have been used to for a while now. They will continue to monitor his blood counts and increase his Chemo until they have him in the right place. This could take months because they only increase them a little at a time. They are telling us they may have to increase his meds to as much as 150% of what they have been. This does come with added problems that we would be so grateful to have everyone be praying for. Added therapy dosages means that Ben's little body will be going through more side effects over the next year and a half. He is more likely to have damage done to his liver and kidneys. They will do routine tests to monitor this and they even have some IV treatments they can use if needed to help repair damage done. His growth has a higher chance of being stunted. And of course his daily issues with Nauseau and throwing up will increase.
Please also be praying for us that God will direct us through finding a new Doctor for Ben. Matt and I have been having trouble with his Doctor's not treating him right and we are very concerned and frightened a lot of the time. We are trying to switch him to Cinncinnati Children's Hospital but are even considering moving to other states including back to AZ to ensure he is getting proper care. I have complained to the Director of Kosair Children's Hospital and he is a wonderful man, but unfortunatley has no control over Ben's Doctor because it is a private practice. He has directed me to get into contact with the Kentucky Director of Pediatricians and has even offered to come to the meeting for support. The Kosair Director feels Ben is not properly being taken care of and has assured us we are not the only people experiencing our problems. Please pray for us because we are constantly worried and it is stressful not just for Matt and I but for Ben too. It breaks my heart how he has to deal with this to and when the Kosair Director asked Ben about his Doctor's he told him "I don't like the Mean Doctor's". Kosair itself is a great hospital and the Doctor's that work in the hospital have always been wonderful so we are hoping for the possibility to be able to get away from the clinic and find a better Doctor for Ben's treatment care.

Oh and if you can believe it my beautiful boy turned FIVE this month. I can't believe how big he is!!!

Jamie

While I'm Waiting - John Waller

Sick This Morning!!!

Ben woke up barfing this morning and not feeling well at all...soooooo after an hour long hot shower,Toy Story 2 snuggled on the couch, ginger ale, saltines and graham crackers he is feeling better. He is really pale today but this always tends to last the entire day on his bad days. He says his stomach doesn't hurt anymore and after the movie he got up and started to play again!! We will pray that he is feeling better tomorrow!!

New Prayers!!

Hello everyone,

Today is a day that I can be so thankful to the Lord that I started this blog and that so many people follow it and have joined us in prayer for Ben's needs and for ours too!! I feel the Lord so stronger in our lives everyday and I am so thankful to be able to see Ben and Olivia grow stronger in Him every day. To see the strength and courage that Ben shows us daily is so amazing! I know his story will be one that will impact people throughout his life. Even now we can use Ben's story to help someone new!

I have recently found out that someone we know through our family has a 6 year old son that has been diagnosed with Leukemia. Please pray for this family!! Pray for strength, comfort, and guidance. We know all to well what this initial shock is like and we know this family needs the power of prayer.

Thanks Everyone

Jamie

We Moved!!

Every time I move I say I dislike it so much that I am never going to do it again! Then I move again... :)

We had a successful move and every night I get a little more laundry done (didn't have the washer and dryer hooked up for a couple of days) and a little more stuff put away.

Ben had a great Doctor's appointment last Wednesday!! His Spinal Tap went great and is still clear of all Leukemic Cells!!! I continue to praise the Lord for giving us these wonderful test results. Ben is tired this week but he is doing good!!! Matt and I both have new jobs...mine is part-time and we found a great and wonderful lady to watch the kids who only watches a small number of children. The kids absolutely love going to her house and being with other kids. I am so happy that Ben and Olivia have a couple of other kids to play with in a good environment because they have really been missing the interaction with other children. Ben has been doing so well and his numbers have been so consistent that we felt it was a good time. Of course if this starts to be a problem for Ben and his ANCs then we will not continue. But so far it is going well and his Sitter has experience with Ben's circumstances so we will continue to pray that the Lord will give us the clear guidance that he has been providing!!

Thank you all for your prayers and continueing support!! It means so much to us. Here is a link to a neat video my Aunt shared! I can only pray that Ben has the amazing outlook and awesome attitude that this man had!


http://www.godvine.com/Man-Dying-of-Cancer-Leaves-Behind-an-Unforgettable-Video-258.html

Ben was really excited that I changed the background on his blog to trains!! Anything trains right now is super exciting for him so of course I scored big points.

February 23rd

Hello everyone,

I wanted to thank you all for your support since Ben's diagnosis! You have all been so wonderful and I really appreciate it. I wanted to invite you to visit another blog of mine. I am doing a fundraiser for an organization that is very important to me. Visit, take a look and let me know what you think!

www.withaneedleandthread.blogspot.com

Jamie

Almost Spring

Winter has been soooo cold compared to Arizona but we are starting to see some small signs that our spring is approaching. Being here for a full year of seasons I can finally say that Spring is my favorite.

Ben is doing wonderful and he is really enjoying a lot lately. He seems to be so Joyful over so many things. His last appointment went well and his next appointment will be March 3rd. They have also given us an ending date for his treatment which will be October 26th of 2012. It seems so near yet far away at the same time.

We are moving to Louisville which is about 1 and 1/2 - 2 hours away. It is still close enough to my parents that they can be very helpful to us if something were to happen to Ben. I am sad to be leaving but also excited about feeling like we get to start again now.

God has blessed me so much today. We have friends in Louisville that I know from Arizona. I contacted them to let them know that we were moving nearby only to find out that they were moving back to Phoenix, AZ in early march. However my friend has just put me in contact with another family who have a boy with leukemia. I am praying that the Lord will build this friendship. I do not know the circumstances yet of what type of Leukemia the other little boy has so until then please pray for this family as I am sure they can never have too much prayer!! Be prayer warriors for them as well!!!

Love

Jamie

2011

We made it into the new year with little trouble. We had a wonderful time in Phoenix visiting all our Family and Friends. We got sick while we were their but the Lord protected Ben and he barely got sick even when everyone else was running fevers! We were a little sad that because of getting sick we didn't get to see everyone we wanted to see but we love you all and Thank you for making our visit so much fun!

The drive back to Kentucky went well! My cousin Lacey drove with me and we had so much fun....We laughed so hard almost the whole way and just had a blessed time together! We had to drive home on the I-10 instead of the I-40 because of bad weather, but the drive we had was perfect and we had sunshine days all the way home!

Ben had an appointment two days ago on Wednesday! Because of the cold/flu we all just had his numbers dropped from 3300 to 300! He is fine and their is no immediate danger. He recieved his Vinchristine in his port on wednesday but his two chemo drugs he takes in pill form at home they have stopped until his numbers come back up. He will have CBCs done next Tuesday to check if his meds can be started again!

I hope you all had a Merry Christmas and a great New Year!!

Jamie