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.