It Is Finished

Ben went up to Cincinnati today for his first follow-up after stopping all his Meds. Last month on 10-8 he had his last vinchristine (chemo) in clinic. This Chemo they give him through his port IV. Then on 10-26 Ben took his last of his two Chemo meds that he takes at home along with the last of his steroids too. He was very excited about this especially when I let him throw them in the trash can!! At his appointment today they checked his CBCs and then sent him upstairs for out patient surgery to have his Port IV removed. He has had this in his chest for 3 years and 2 months. His port is his biggest physical reminder of the leuekemia so he is very excited to have it gone. Only one thing kept it from being perfect today and that is that the surgery was scheduled at 1pm and he could not eat anything after midnight the night before so by the time his surgery rolled around they ended up having to give him glucose in his IV because his blood-sugar dropped below 40. As always God is with us and he was fine after they gave him the glucose. They actually put Ben to sleep with gas in a mask first so he did not have a trauma this time with the IV. We are so excited for next year and being CANCER FREE in 2013!!!! We are rejoicing daily with Ben and sometimes it still does not feel real!! Some days I can't stop grinning and some days I want to cry (in a good way). I love my son and his enthusiasm as he stops to tell anyone who will listen "NO MORE CHEMO". The love people have given us through this has been awesome and the prayers that were sent up for Ben will make me forever grateful. Every one of you who prayed for Ben were fundamental in saving his life and I will believe this always!! Thank you for all you support whether it was prayers, emails, phone calls, cards, gifts, love, devotion, tears and faith that the Master Physician could and did heal Ben.

We are Doing Great!!!

This tuesday will be two weeks since we got home from the hospital. Ben is doing wonderful and is enjoying Kindergarten. God has given us just about the best Kindergarten class for Ben. It feels like God hand-picked it himself!!! Ben still has a little bit of the cough that he had from the influenza virus. He came home tired, but seems to have fully recovered from that. I am back to work and we are finally getting back into our routine!!! We will continue to pray that Ben will do well until the end of treatment. We are so close!!!!!!!!! I am so excited and Ben is counting the days. We made a trip back up to Cincinnati for Ben's regular treatment appointment this past Wednesday. He did really well and his final appointment is October 8th. I can't believe how close it is and how well he did. I will forever be convinced that the faithful prayers from everyone has been honored by the Lord and has kept Ben on a great path!! We love you all! Jamie

Blessings!!!

Ben's CT scan from yesterday came back clear of infection. This is wondeful news and tells us that the meningitis is being taken care of by the anti-biotics. I talked to Ben's Dr. this morning and he will be released on Tuesday probably sometime in the afternoon. We will go home and he will still have to stay at home for maybe two days before returning to school and normal activities. Thank you again for blessing us with your prayers and for remembering us so often. God is truly honoring the faithfulness of our families and friends who have interceded for us so often. Today Matt, Rita(Mom-In-Law), and Olivia came to visit Ben. I also was blessed with a visit from a very dear friend that I had not seen in ten years!! It was wonderful to see my baby girl and Rita blessed me with some wonderful home cooked goodies!! Matt and Rita even let me escape from the hospital and go to lunch with my friend Niketa. It was a lovely lunch and getting out was very relieving and I am so glad I can go home in four short days!!! Ben is feeling much bettter from his cold symptoms. He has been happily humming and coloring and playing games since his sister left. It seems to have given him some peace this evening to see her. With Love to You All, Jamie

What a Mighty God We Serve

Praise Him!!! Ben's CT scan came back negative for anything unusual!!! There is one more test that they started today and I don't know when the results will come back. There was enough of Ben's fluid from the last spinal tap to test it for the Para-Influenza virus that was in his bloodstream. They have tested for so many things that they have ruled out so much that they are looking at two scenarios when the test results come back. It is very rare that the Para Influenza virus can get into the spinal fluid but if it is then that is what has caused the meningitis and if it is not present in the spinal fluid than he is just unlucky enough to have both para-influenza and meningitis at the same time. The final results on the corynebacterium from his original blood culture in Louisville finally came back. The species tells them that it is most likely a contaminate and not something truly in Ben's bloodstream. This is great news. Also, on the small chance that it is in his bloodstream they tested it for sensitivity to anti-biotics and it is sensitive to vancomycin which he is on anyway. Ben's creatin levels in his kidneys are still high so they are drawing blood and testing his levels before each dose of Vancomycin is ordered so that they can adjust the dosage and keep him safe. Ben had cereal for breakfast and is painting happily right now. He feels good today. He has a fever but no headache. My Mom and Dad are on their way to visit. This will be very good for him. I love you all and Thank you again for your prayers. Jamie

Lord Grant us Strength and Peace

I am going to explain this a little out of order so that I can have prayer coverage were we need it the most right now. You will read farther down that Ben is going to have a CT scan soon. Because they cannot do the contrast in his port they have to do an IV in his hand. They have already tried once and it did not work. Ben is absolutely terrified of this and although they got in the vein his anxienty is causing it to tighten up and blood will not flow. They have requested the IV team to come down because the veins in his tiny little hands are very difficult to access. I requested that they give him something to calm him and they have given him adovan. It has not made him sleepy but he is sitting on his bed and painting and singing. He hasn't been singing since we got here and he rarely sings unless he is at home or at Poppy's house, the places he feels the most safe. But I am having a hard time with this because it just terrifies him and he screams for me "Mommy please make them stop" and they had to hold him down and normally he is so tough and my heart is just aching and I want to make them stop hurting him so bad, but I know they have to do this and it is so hard. As I am writing the Adovan seems to be calming him down and even making him a littls sleepy so I am just Praying and Praying that it will be enough to make it easier on him. Please Pray for my baby! Lord Give us both strength. I just want to Shout our to the Lord and beg for him to stop all of this!! I am not so much different than my son. I posted last night about the virus tests that came back positive for para-influenza. This is a common virus that is cold/flu like syptoms that include fever, coughing, and congestion. This Para-influenza can sometimes get in the spinal fluid and cause meningitis. This morning during rounds the Doctor's let us know that they wanted to do a CT scan to double check that they are not missing anything. Rarer things like an absess in his brain. They want to be sure that there are no other problems in Ben's brain that could be causing the horrible headaches. They also want to scan his chest and pelvis to ensure that there aren't any other problems. Everytime they give him his Vancomycin every six hours they check his kidney functions because this is a pretty hefty anti-biotic and could do damage if not watched closely. His Creatin levels are too high right now so they did not administer his last dose of Vancomycin and took blood to check out his kidneys again at 10:00am this morning. Once they have those results back they will determine how they will proceed with the Vanc. They may lower the dosage and/or change it to every eight hours instead. The other situation of concern this morning is that they really feel that it is important to do he CT scan however they have to use contrast and that also goes through his kidney's. So they will be giving him a lot more fluids right after the scan to help keep his kidney's healthy from the contrast and the vancomycin. As soon as they access him and we come back from the CT scan I will let you all know how he is doing. Thank you. Jamie

Updates

Ben had a better day today. He still had a some coughing but no fever and no headaches. One virus they tested for came back positive for a virus called Para-influenza. This is a common cold virus that causes coughing and congestion. The good news is this means they are on the right track with the meningitis. The unfortunate news is that my baby has meningitis and a nasty cold!!! This virus does cause fevers as well so that explains yesterdays spike. Thank you for your continued prayers for Ben. Love Jamie

Sunday Evening

Okay so on Thursday Matt took Olivia to the Doctor about a cough she has been experiencing. She has Bronchitis but hasn't had any fever or anything that meant she needed anti-biotics. She is feeling a lot better today but still coughing a little bit. On Friday night Ben started coughing. It really sounds very similar to Olivia's cough. I also had this cough 2 weeks before Ollie, so it could be they both caught this from me. The cough is aggrevating Ben's headaches, and he started sneezing almost everytime he coughed all day on Saturday. Today Ben woke up with a fever and he has been fever free since very early on friday morning. So they have drawn cultures to check, they do this anytime a fever comes back after 24 hours. Ben's headache was really bad today and he spent most of the day with the lights off and his head under the blanket or buried in the pillow. My mom and dad were going to come to visit today, but mom got a cold so they had to change their plans. This made Ben sad but he understands. Matt and his mom are coming tomorrow morning so he will get some visits in tomorrow. Ben is such a strong little guy. Sometimes sitting here I can't believe he is a six-year-old. Most adults wouldn't handle this level of pain with half as much strength. Pray for my baby Please!!! It is so hard to watch him be in so much pain. The Doctor gave us a little bit of hope that we might only be here for 14 days. Pray for wisdom for the them to make the right decision. They will re-evaluate Ben at 13-14 days. It could go one of three ways: 1. They decide they are sure he is well enough to go home. 2. They will decide they need to do another spinal tap to confirm there is no more sign of infection. If there is they will keep him for the full 21 days. If not they will let him go home. 3. Or they will be unsure if 14 days is enough but not want to put him through another spinal tap and keep him here the additional week of anti-biotics. The Corynebacterium that came from the original culture has not grown enough for a species yet and all of the more recent cultures have not grown anything yet. Thank you to everyone for your continued prayers and support. Thank you for those of you who sent the E-cards from the Cincinnati Children's Website. Ben loves them and we have them hanging on the wall. He asks me several times a day to read them to him. If anyone else would like to send one you can do this at http://www.cincinnatichildrens.org/patients/resources/ecard/ Just put in Benjamin Bearden (dont use Ben) and leave the room number blank. We are so blessed to have so many people praying for us and I want to let you all know how powerful it is and that there have been so many times when I just KNOW that people everywhere are praying and I can see things immediatley start to get better. Please keep it up because we need it!! Love you all, Jamie

Almost Made It!!

We almost made it to the end without something serious happening! However, we couldn't be in a better hospital. Ben is in good hands!! There may be several of you who do not know that Ben was admitted to Cincinnati Children's on Tuesday afteroon so I will update his blog for you too and hopefully piece together all the information for you. On Thursday the 16th Ben had his monthly Chemo treatment in Cincinnati. Everything went well and we went home with great expectations of the coming week. We had already had Ben's Kindergarten Orientation on the 14th and it went really well. Ben was looking forward to being a Chancey Cardinal this year!! On Friday the 18th Ben told us he had a headache, but I really just thought that he was really tired and over excited about Kindergarten starting the next tuesday. I worked on Saturday and when I got home Ben had another headache and was laying quietly on the couch. Matt was getting ready for his shift at the fire department that night and was just about to leave when I realized Ben had a low-grade fever. So Matt called in so he could stay home with Ollie and I packed a bag and took Ben to the local Emergency Room. When we got there they accessed his port and drew blood for CBCs and to start a culture. Ben's fever broke on it's own so no Tylenol was given. They gave him Rocephen to start treating for the fever. On Sunday the fever did not return so we went forward with our plans for the week. I went to work on Monday and afterwards took the kids shopping to buy Ben's lunches for his first week of school. We had an uneventful evening and went to bed early. On Tuesday morning I woke up the kids and began getting Olivia ready for daycare and Ben ready for his first day of school. Ben went in to use the bathroom and almost immediately started crying that his head hurt really bad. He is really not a complainer even when he feels horrible and so I knew he really wasn't feeling good. I took his temperature and sure enough he had a fever again. I called the Dr. in Cincinnati and was told to take him back to the local E.R. As soon as I told Matt that I was taking Ben Olivia jumped up and ran into her room and packed him a big bag full of toys!! Sweet girl, I love her!! I got Ben to the E.R. and they took drew for CBCs and cultures again. At this time they checked his cultures from Saturday and discovered that there was a growth present. It was to soon to tell what it was but it was enough for Cinci to decide to bring him up regardless that his ANC was over 4000 both Saturday and now. But at least because his counts were higher I was aloud to drive him up in my car instead of being transported by ambulance. When we got to Cincinnati they re-drew his CBCs and cultures and started ben on vancomycin and zosin, two very strong broad-spectrum anti-biotics. They let me know that they were concerned that the culture taken on saturday was contaminated because it did not grow anything in the first two days. Also they let me know that the newer cultures may not grow anything because he was already given anti-biotics on saturday. The big concern was meningitis. The big signal of this was the fact that Ben was having an excrutiating headache. Ben has never had headaches before so this was a concern. Ben's headaches at this point were so bad they had to shut the blind on the window and turn off all the lights and he still was putting his blanket and pillow over his face. Sensitivity to light is also a sign of meningitis. They spent most of the day discussing the need for a Spinal tap with me and deciding if it was going to be helpful. Because Ben was already given anti-biotics on saturday the cultures from the spinal fluid might not grow anything. However they knew that if they found any white blood cells in the spinal fluid it would confirm that he has an infection in the spinal column. If there were mostly neutriphil white cells that would indicate a bacterial infection. If there were mostly lymphocyte white cells that would indidcate a viral infection. They ultimately decided that the good outweighed the bad and that a spinal tap would be done in the morning. Yesterday Ben had a Spinal Tap at about 12:15pm. At about 2ish the Dr.s came in and said that they believed Ben had Bacterial Meningitis. His Spinal fluid was full of white blood cells that were mostly neutriphils. They do not believe that the culture from the Spinal fluid will grow anything because of the anti-biotics that were already administered but they will continue to check it to be sure. They let me know to expect to be here at Cinci for 14 to 21 days at least. This is how long they will continue the anti-biotics to take care of the meningitis. Today the bacteria in the culture finally grew enough to give them a Genus name. It is corynebacterium. This is a bacteria normally found on skin. They do not believe that this is what is in his spinal fluid. This is either a contaminate that happened during the collection process or a grouping of this bacteria near his port entry. They still are waiting for the culture to grow enough to give it a Species name. There are some really bad types of this bacteria that are really scary and there are some that are not as worrysome. Please continue to pray that it will not turn out to be one of the really bad ones. This is still a pretty big concern to the infectious disease people. However, even with this news they are still feeling very confident that this is not causing Ben's fever and headaches and are not changing course in his treatment for meningitis. I do trust them completely and they are really doing there best to take care of Ben and get him well. So we are going to be here for two to three weeks from this last Tuesday. There is a school teacher that works at the hospital who will do school with Ben every day. This is a blessing in the fact that he is already going stir crazy from being confined to his room and it will give him something to do every day!! I have applied for FMLA at work so I can stay here with Ben without risk of losing my job. My managers are really great and are giving me lots of encouragement. They even were really great to Matt when he went in yesterday. I am so blessed not just to have amazing family and friends, but to also have a great work family too is an awesome thing!! Ben was able to Skype with Olivia, Matt and Rita( grandma), Olivia wouldn't let anyone get a word in!! Just like her mama!!!! Ben also was able to talk with David (grandpa) on the phone and Mike( grandpa), Claudia(grandma), Uncle Zach and Cousin Savannah. This was very exciting for him and very uplifiting. I could tell he felt better after talking to them. Unfortunately his headache has returned and it is making it hard for him to go to sleep. They are trying oxycodone first because the morphine keeps him awake. Hopefully he will be able to go to sleep soon. Just a funny note: Ben loves Morphine!! It makes him very giddy and he is very entertaining. He asked his Poppy (grandpa-mike) "Poppy do you love Morphine?" and my dad said "Yes I do" and Ben replied with a big goofy grin "Me Too." After we got off the phone Ben told me "Mom, I love it and I think everyone should try it at least once" -----Yes God gives us funny moments even in hard times---- Jamie

Six Months!?!?!?

Oh my poor readers!! God Bless you!!! I feel horrible that is has been so long since I have updated Ben's Blog. Matt has been in his part-time Fire Fighting Academy and will graduate on July 10th. I can't believe we made it through but here we are and it is done. What a great blessing God has given us in giving Matt the opportunity here to join the Fire Department. Even on a Volunteer basis it has already opened many doors for us. Ben is doing Wonderful!!! He has four more appointments left and I cannot believe it! October 11th should be his last treatment and we are so excited. I am hoping we can come home to Phoenix sometime after that to have some sort of get together to celebrate. I will keep everyone updated!! Ben has a Spinal Tap this month and one more on his last appointment in October. His Port IV will come out sometime before Christmas. Ben was able to play T-Ball this summer and really had a blast! He is a great little pitcher and loved playing on our Church's Team. Thank you so much for your ongoing prayer's, emails and phone calls. YOU and your prayers are what have gotten us through so keep them coming because we are almost there!!! Love you all Jamie

Chicken Pox

Last Wednesday Ben was exposed to the Chicken Pox. On Friday Matt took him to Cincinnati Children's to be given and IV infusion. The infusion is called IVIG and gives Ben antibodies to be able to fight off the Chicken Pox if he does get them. Our prayer is of course that he does not. If he does come down with the Chicken Pox he will have to stay in the hospital the entire time he has it. With the IVIG infusion the average time is one week to 10 days. So really not that much longer than he would have it anyway.

Please pray for us. Getting the chicken pox is never fun for anyone, but it can be very dangerous for leukemia kids. We have to wait 21 days to be sure that he is past the point of getting it. Unfortunately we are supposed to be leaving in 23 days for Florida to go to Disney World for Ben's Make-A-Wish trip.

We love you all and Thank you so much for you prayers.

Love,
Jamie