March

To everyone who so faithfully follows our blog I am sorry it has been a while since I posted. In February we found out that Ben was through with the introduction phases of his treatment and ready to begin maintenance. To begin maintenance Ben's ANC had to be at least 750 and it wasn't until last monday that his counts went up high enough. On Monday last week his counts were 2465. This is a good number and the highest Ben has been in a while. He went to Louisville on Tuesday last week to start his maintenance treatment. He had a lumbar puncture and the administered the methotrexate into his spinal fluid. He also recieved Vinchristine into his port. This will be repeated every three months. Initially we thought it would be every two but they let us know at the appointment that it would be three. He has more Chemo that he will be taking at home. Every day for the next three years he will be taking a Chemo pill called 6MP every night before bedtime. He will also be taking Methotrexate (the same that has been given into his spine) every Thursday except when he has spinal taps because he will recieve it in his spine those weeks. He will be taking Steroids the first five days of every month as well. He has taken Steroids and 6MP before so we have a good idea that he handles these drugs pretty well. He has never taken the Methotrexate orally before so we will be giving him that this Thursday for the first time and are praying for God's blessing that he will do well with this too.

Ben is very excited that his hair is growing back! He takes off his baseball cap and shows everyone the new growth with a big smile on his face. It is growing in very dark brown which is different than how it used to be. They told us that Chemo can change the color of your hair, the texture, and some kids even get super curly hair when it returns. So far it seems to be as straight as ever but just quite a bit darker.

We love you all very much and I will continue to post every couple of weeks unless something changes. Please continue to pray for Ben that God will continue to heal his body and that he will not come out of remission. Thank you all for provide to us in your prayers. We can see God working in our lives every day.

Love
Jamie

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