Great News!!!

We got good news this week. Ben is in "maintenance"...this is such a great thing for him!! Maintenance is 3 years long as long as their are no delays and it starts on March 2nd!! Maintenance cycles are 57 days long. Ben will only have to go to the Dr. once every four weeks now! On Day one of the cycle Ben will have a spinal tap and Methotrexate(Chemo) will be injected into his spine. He will also have Vinchristine(Chemo) in his port on day one as well. He will have to take steroids on days 1 thru 5 each month. He will also have different take home Chemo drugs in pill form to take through the cycles as well. It sounds like a lot but this is actually much less than we have been doing every month so far.
When Ben had the ERRI-C treatments they did warn us that his ANC would probably hit zero. This has happened so we are being very careful about exposing him to anything. They also let us know that his hemoglobin(red blood) and his platelets (the cells that make blood clot) could get down to dangerous levels requiring blood transfusions. This did happen this week and Ben had blood transfusions on Wednesday and will most likely have to have more on this upcoming Tuesday. He did well during the transfusions and about twenty minutes into the three hour process he was feeling much better. When his red blood counts are low he feels very sluggish and grumpy. We can tell that they have lowered again because he is pale and low energy again.
This has been a very encouraging week for us and we are excited that we can now begin new plans for visiting Matt's family and allowing Ben to do more things that we had to restrict until now.

Thank you once again for all your prayers and support. It has gotten us to this point!!! PRAISE GOD!!

Jamie

Ben's Letter

Today it is snowing at Poppy's house. Grammy got a new horse for Daddy. His name is Matt ( haha he is telling you Daddy's name not the horse). I went to the doctor and I got tubies ( his port IV was accessed today). Sissy's name is Olivia.



Ben

Good Day

We went to the Louisville this morning and found ourselves to be the only appointment that day for the doctor's because it was snowing so not many people came in. So we zipped right through and were home before noon. Ben is doing well and is an extremely happy little boy because I got the Dr. to rewrite all his prescriptions to pills instead of liquid. THANK THE LORD that he has learned how to swallow pills because his Zofran which is anti-nausua medication actually makes him throw up. To his credit I tried just a little bit on my finger and I threw up too. Also his Zantac is now in a pill too. These two prescriptions really were very difficult for him and us. We felt like Giant jerks making him swallow them. We would sometimes have to hold his nose and mouth closed so this is such a blessing and answer to prayers. The Dr. & the pharmacist said that it is really abnormal for a three year old to be able to swallow pills but we are counting ourselves blessed.
We are doing one more week of the ERRI-C treatment so four more days of Matt or my Mom giving him his Chemo. Next week he will have another appointment but we are not sure when.

Pray that God will give Ben yet another good week. Dr. Bertalone said that the second week of ERRI-C tends to be very difficult he said we needed to be ready for bad nausua and vomiting, high fevers, and tremendous mood swings. We are praying that we are in the lucky few who do not experience this but we will have to wait and see.

Continue to pray for us, for peace, strength, understanding, and faith.

Love Jamie

A new week!!!

We were finally able to get Ben his treatment this week after a 3 week delay in treatment. Ben's counts were just high enough for us to get him treated on Tuesday. They introduced three new drugs to his system. The first Sytoxin required eight hours of fluids to protect his bladder from bleeding. He tolerated this very well and did not have any bleeding which is great. He did have a spinal tap to check once again for bad cells in his spinal fluid and also the Sytoxin was administered into his spine. The second drug is called 6TG and it is a pill we will be giving him for a total of fourteen days. He is taking these just fine and has not had any bad reactions. The third is called ERRI-C and it is administered through his port IV for four days in a row. They administered the first dose to Ben at the Clinic at Kosair and we found out at clinic that they were not able to find any home nurses willing to adminster Chemo to a pediatric patient so Matt has given ben the ERRI-C the last three days. They will not always allow Matt to do this depending on the type of drug he is recieving but this is a safe chemical for him to give Ben. Ben has actually really liked that Matt is giving him his medicine this week. I am thankful that we mentioned that Matt is an EMT so that now we do not have to drive back and forth as much, because it is very exhausting for Ben. We are leaving for the local hospital shortly to do lab draws to check Ben's counts so we can determine wether or not he will continue this round of treatment next week.

Aside from the usual mood swings and food changes in taste for Ben we are managing well. Ben is still such a little brave guy every time we go in to the Doctor's. We love you all very much and still praise God every day for the amazing prayer support.

With much Love,

Jamie