Got a Little Scared There!

I have been having a horrible ordeal trying to get into this blog. I somehow got locked out and have been working for months trying to get back in so I could continue to update everyone on how Ben is doing. Let me tell you if you can't answer the crazy questions that Google requires AND if you can't verify through your phone number then things can go downhill very quickly. But through the Grace of God Matt was able to finally get me back in and my broken heart was instantly repaired. I love that man with all my heart. I will be updating Ben and Our Whole Family this weekend. Love you all Jamie

1st Anniversary!!!!! WOOHOO!

I almost can't believe it has been one year since Ben finished his Chemo-Therapy! This year has flown by so fast. Ben is in 1st grade and loving life. We have moved to Alexandria, LA and really enjoy it here. We wish Poppy could be with us to celebrate, but we know he is dancing it up and celebrating with Jesus! We could never have gotten to where we are without the awesome, amazing prayer support of all of our family and friends. Thank you so much for honoring us with your prayers, we are forever grateful! We look forward to our 2nd Anniversary. Love you All~*~*~*~*~Jamie

Cancer Free for a little over 2 Months!!!

It feels so wonderful not to feel like a crazy neurotic germ phobic Mommy!!! We had th flu this weekend. The REAL flu!!!! and we were able to stay at home like a normal familya and deal with it with a Dr. visit and a prescription!! This is a little to normal.....It doesn't feel real yet. Ben's most recent check up #2 went great!!!!!!!!!!! He had a bone scan to check the density of his bones. His long-term use of the steroids put him in danger of not growing correctly and praise the Lord again that the test came back great and he is growing perfectly!! This has been weighing heavily on me and I am so happy about these results. WE STILL NEED PRAYER FOR US AND FOR SOMEONE NEW!!!!! !Please pray for my newest friend Anni and her Father. They just recently found out that her dad has prostate cancer and it has spread to his bones. The good news for them is that it looks like he won't need chemo or radiation. This is a huge relief for them, but the road is tough and the biggest need of prayer is for Anni's father and mother who are not saved. All of us have someone we know or have known who is not saved and the pain that goes with that. I want to ask everyone who prayed so hard for Ben to please Love on this family and drown them with your prayer power that you gave so lovingly to us. I have really felt the Lord pulling me to pray for them and to ask my awesome warriors to do the same. Pray that God will use every minute of this to show them that He is Real and is True!! My parents are moving back to Arizona tomorrow!!! I am excited for them and sad for me :) Please pray for me and my kiddos for comfort. We could use it. :) Thank you again for all your prayers and support. God really has used you so much in our lives in the last 3 years! Jamie

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

December 2011

Dear Family and Friends

Merry Christmas!!!

I can't thank you enough for all the prayers and support that you keep sending us. The emails that I get are so encouraging and I just want to say that if you think of us please continue to write me and tell me about it. I will never be able to express how amazing and uplifting it is and those little messages always come on the worst days and help me get through it all. Sometimes it is hard to express on the blog how I feel on those days but I always seem to get a message or a phone call at just the right time to get me through it.

Christmas is in two days and I have never felt more blessed. This has been an amazing year with such big battles but such HUGE VICTORIES!!


God blesses us daily with our two beautiful children

Ben is a constant joy. His little tender heart is so sincere and so machure. It made me sad in the beginning because I felt like Cancer made him grow up too fast, too soon. But truthfully God is showing me daily that through his Grace he is protecting Ben in all the right ways and strengthening him in all the right ways too. He is a tough kid with a sweet and gentle spirit. He is filled with such a special compassion and understanding that will only make him a wonderful man someday. My biggest joy this whole year was when Ben made the decision to accept Jesus as his Saviour. Matt and I reinforce this daily for him and I am excited to see what this coming year will bring him. I pray that we will be able to go to church more regularly this year because I want to watch my children grow in the Lord. Ben was dealing with a little bit of a temper, but I am so proud of him because he very quickly has learned to control it even when he is extremely angry. It is very important to him to control it because we have talked about how Jesus feels about that. Ben is still madly in love with his trains and can't wait for his birthday because he knows he will be able to start the boy scouts! This is a big deal to him and he asks me everyday "How many days to my Birthday?" (142 hahaha). Please keep faithfully praying for him to continue to stay in remission and Praise the Lord once again that he is now in a safe place with his treatment and being cared for by a wonderful team of medical providers at Cincinnati Children's that care for him and love him.

Olivia is a NUT. She is full of endless energy and a wild spirit. Matt and I are challenged daily into teaching and guiding her into harnessing this wonderful energy and spirit to become a strong woman of God. She is fearless, competitive and confident. I know that as long as Jesus keeps helping us on a daily basis she will grow to be a fabulous light shining for the Lord. Olivia loves her brother with all her heart. She annoys him like crazy, but she loves him dearly. They are best friends and I hope it stays that way. She is a strong influence on her quiet brother and keeps him on his toes and teaches him that he has a voice and can be strong. Ben teaches her to be sensitive and to think before she acts. They are a good team and it is my prayer that God will keep them friends for life so they can lean on each other forever.

Matt and Me

Matt is doing well. He also remains in remission! Praise the Lord!! He is my wonderful friend and I love him dearly. I am excited for the coming year and what it means for Matt. He is in the process of applying for a Fire Department here and the outcome looks great. He is a great strength to our family and keeps me going when I feel like I can't go any farther and he supports me in my hobbies and endeavors. We have begun taking our ballroom dance lessons again. It have been over two years since we have gone and that one night a week that we go is a great time for the two of us to enjoy each other and learn to dance together. We are both enjoying Louisville, but at the same time miss our families. We have made some lifelong friendships, have found a wonderful church that we love and can't wait to be able to go on a more regular basis. We really love our new Pastor and feel that we are growing so much each time we hear him teach. The people at this church took us in, they pray for us and they teach us. We both feel like we have been at this church much longer than we have and we know that the Lord hand-picked it for us.



I finished my quilt this year that was two years in the making. It was recently raffled of to support my favorite non-profit organization Global Health Training
I was blessed that so many people got involved and we were able to raise over $2100.00 for this wonderful organization. As I said above Matt and I started taking dance again and I couldn't be happier. For me it is the best date night we could have. I love the exercise and enjoy the time with my hubby who is a wonderful dancer. I feel that God is doing so many amazing things in my life and is really using this time during Ben's treatment to His purpose. I am in the process of undertaking a giant step towards advocacy of patients rights to expect better treatment and care for the children and families at Ben's previous treatment Center. God is daily opening amazing doors for this to happen. I am regularly meeting all the "right" people in all the "right" positions who can help make positive changes. And on the days when I feel tired or that I just don't know if I can make a difference the Lord sends me someone whether it be another parent who asks me to keep fighting or even the most recent was yet another Doctor who has completely backed me up and is getting me in touch with more physicians who want to bring the head Doctor of this clinic out of the controlling position he has in the Oncology clinic here in Louisville. It is a slow process but at least this process will bring about necessary changes. I can only pray that God will continue to open doors and bring me to the right places to meet people who can make the difference that is so greatly needed.

And with all that I want to say one more time. THANK YOU for making 2011 a great year for us. We never would have had the time we did without all the prayers that you have sent up. Please continue to pray for us and the families that we have met this last year who also have kids battling Leukemia and other forms of Cancer. There is strength in numbers especially in prayer.

Love Jamie

Doing Better!!

Thank you everyone for all your prayers this last week. We made it safely home on Tuesday night with Ben. He was very, very tired but happy to be home. The rest of the week has been pretty mellow. Ben has been very tired at the end of the day so he has slept quite a bit this week. He also started his Steroid treatment on Tuesday night so he has been VERY hungry. I had off this weekend and monday too so we were able to take my neice this weekend. We are having a blast with Cousin Savanna and we are going to be doing some Gingerbread houses with the girls and Ben will do a Gingerbread train(he is so excited).

Thanks again and we love you all!

Jamie

Tuesday Morning

Ben is doing well this morning. I had a hard time getting him to sleep last night. He is still turned around from being up until 4am on Monday morning plus not really doing anything really active yesterday. He did not go to sleep until 1am this morning. He asked for Zofran last night saying his tummy was hurting and had some more benzocaine drops in his ear for pain.
The Dr. came in at about 3am to check Ben's stool. The nurses were alarmed because it was bright red and thought it was blood. They are testing to be sure but it looks like it is a side effect of lots of Gatorade yesterday. As long as those tests come back negative for blood then we will be released this evening. Matt will come and pick us up after he gets off work tomorrow. Ben was supposed to have his clinic visit tomorrow afternoon but they are going to give him treatment today while he is here so that we don't have to make the trip tomorrow.
Thanks for all your prayers. Please continue to pray for us because Olivia caught the 24 hour stomach flu that Matt and I had last week. She is doing fine now and got through it okay. Please pray that Ben will not get it because it would probably mean we have to come back up here to Cincinnati.

I love you all and will keep you updated. Ben says Merry Christmas!!!!

Love
Jamie

How a Germa-Phobic Mother Takes A Shower at the Hospital

Step 1. As many clean towels from the nursing staff you can get (NO Ten is not too many!!), and a Trash Bag for dirty laundry, and two washcloths(in addition to the one to wash with).

Step 2. Drape a clean towel over the sink so you have a clean surface for your clean clothes.

Step 3. Place several clean towels in two layers as a floor mat by the shower entrance making sure to be able to reach the sink from these towels.

Step 4. Untie shoes and pull tongues out for easy entry.

Step 5. Carefully place dirty laundry into trash bag taking care not to drop anything on the bathroom floor. Keep in mind if you do you can always bleach it (if not bleachable, burning is always an option). Remember when removing socks to step onto the towels and not directly onto the floor with your bare feet.

Step 6. Use one of the washcloths to turn on the shower. Take extreme care not to touch the walls or showerhead of the shower.

Step 7. When exiting the shower stand on one foot and clean raised foot with soap stepping that foot onto the clean towels then just as carefully repeat with other foot.

Step 8. Put on all your clothes and finally slip into your shoes all while never touching the bathroom floor. Use second washcloth to turn off shower and kick all dirty towels and washcloths into the corner on the floor.

Step 8. Wash hands, exit bathroom, sit down, sigh and say a prayer that the TOWELS were truly clean.

At the hospital

The last couple of months have been going by like a whirlwind and I could not believe when I logged in today that it has been since August that I last blogged about Ben.

First I will briefly fill you all in on the last few months. In September we started the beginning of Ben's homeschooling. We have stayed fast in our decision to keep him at home during his time of treatment. He is learning fast and is showing us a hunger and love for learning. October and November went by pretty uneventful. We spent Thanksgiving home with just the four of us. The kids really enjoyed themselves and we have already set up our Christmas tree. Ben and Olivia seemed to love decorating the Christmas tree more than anything else they have ever gotten to do. It was our first year that we weren't gone almost the entire holiday season so it was their first tree at home. Needless to say they are enjoying Christmas at home this year.

Last night at about 7:00 I had to call Ben's Oncologist up in Cincinnati. Ben was having extreme ear pain and a slight fever of 99.9. This is not actually considered a fever, but coupled with the ear pain they wanted us to go to the emergency room. We took him to the local E.R. by our house and they started him on two different anti-biotics. They also took his blood to begin cultures to look for infection and to check his ANC. His labs came back and his ANC was 90. Anything under 500 is called neutropenic and he was taken by ambulance to Cincinnati Children's. We got here at C.C. at about 2:30am and were admitted. They re-drew labs this morning at about 4am and his ANC had risen to 230. Dr. Hammill said that as long as his counts stay on an upward trend AND he stays without fever we can go home as soon as tomorrow evening. Ben was scheduled to have his next clinic visit on Wednesday AM so now we are doing it tomorrow so we do not have to make an extra trip up here.
At the local emergency room I was able to meet a new doctor that we had not met before. He was a wonderful man and after hearing about our troubles at the previous clinic and the way we were treated really encouraged me to continue to find ways of making public the way we were personally and medically treated. He gave me some great advice on how to take the next steps to ensure that Ben is the last child to be treated badly at that clinic. We praise the Lord daily that he saved us from that situation and praise Him yet again that he continues to bring people in our path who only want to better the treatment and the current staff at the oncology facilities in Louisville. Until then we are safely being cared for by some of the best staff in the nation. Ben loves being here, although we are both ready to be home tomorrow and get back to our normal activities.

Here is were I have saved the best for last. On November 21st in the warmth and comfort of our humble little apartment Benjamin accepted Jesus as his Lord and Saviour. I am so joyful for him and he is so happy about his decision. We are working hard to constantly confirm to him how supportive and excited we are about his "Big Boy" decision. He started the conversation with his constant wondering about heaven and death. Matt and I are rejoicing in the Lord and are very comforted by this. Ben is already sharing the "Good News" with his sister although it mostly is misunderstood by her. We will continue to teach and share with her and we know the Lord will bring her into his flock too!!

We Love you All

Jamie

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