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