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

We miss everyone and wanted to say Thank you to everyone who has been giving us such amazing prayer support!! We also want to thank everyone for their cards, emails, facebook messages, and gifts for Ben. It has been a tremendous blessing to our family to be supported by such an amazing number of people. We can see God working everyday to heal Ben and to open doors to starting our new life here in Kentucky!!

We love you all so much

The Beardens

Today's was Crazy

We had an appointment first thing for Ben this morning so we went to Louisville last night so we didn't have to drive really early because it seems to wear Ben out and he was scheduled for eight hours for this treatment. We had a wonderful evening that we were able to spend with some old friends that I know from Phoenix who live in Louisville now. Matt and I walked away blessed and encouraged from our evening with them and went to stay the night at the Ronald Mc'Donald House. For anyone who doesn't know the Ronald Mc'Donald House is a wonderful non-profit organization that provides hotel style rooms for a low or sometimes free rate for people who have family at the hospital who are far from home. Louisville is about one and a half hours to two hours away plus a one hour time difference so it is nice to be able to have somewhere to stay when we have the all day appointments because we have to be there so early in the morning.
Unfortunately when Ben got his blood drawn on Monday his ANC was 1200 but this morning it was had dropped to 735. His count has to be at least 750 to start this next round so we were sent home and we will try again on Monday. This is the first delay we have had in Ben's treatments and instead of being discouraged we are praising God for our blessing's he has provided because this is the first delay we have had so far. From what our Doctor said this morning this is very rare most families experience at least three or four delay's in the beginning phases so we truly are blessed so far.

We continue to try to take each day and look at the joy God is providing!! Pray for us that Ben will continue on this path that God has laid before us of healing and that we can grow stronger in Him each day.

Love
Jamie

Kentucky Update

The last three weeks have flown by at such an amazing pace that I am just feeling crazy. Christmas was a very nice time spent with Sean & Jo, Ben & Val and all the kids. Matt's parents came to visit and the kids of course loved their time with them. It was a full house for sure but we had so much fun. It snowed over the last few days and the kids thought it was great!! It was a really pretty sight.
I got a horrible stomach flu with a high fever last week and we were praying that ben would not catch it. He seems to have gotten a touch of it but nothing as bad as what I went through so we are blessed that he did not have to stay at the hospital.
Ben is doing well with this phase of treatment that he started three weeks ago. He finished his second round of steroids two days ago and his appetite is starting to go down again. Ben did not gain as much weight as the first time he was on them but he is a little chubby this time. Monday and today Ben had to have his ANC checked because his next Chemo session that was scheduled for this upcoming Monday could be done. Unfortunately his count was not high enough so he will not be having a treatment on Monday. We will have to get his count checked again everyday until it comes up high enough. It is sad that he will have to have his finger poked everyday but he is a little trooper. He also loves to get suckers, but he never forgets to bring one home for Olivia. Such a thoughtful little guy :)

I will be coming to Phoenix with Olivia on the 25th thru the 1st. I have some work to do to prepare the business for the tax season. I am sad it will be so short a time but I am hoping to visit many of our phoenix family and friends. We miss you so much and still feel so supported with all the lovely messages and emails and notes we get in the mail. We do have a new phone number and mailing address so if you want to update our info drop me an email at babybearden1@hotmail.com and I will send you our info.

Love always Jamie

Love you all Jamie