History

Saturday, December 30, 2006 6:38 PM CST

Dear friends,

Hello to everyone, sorry for the long delay in updates, and we hope you all have enjoyed the holiday season so far. Our boys had a wonderful time celebrating Christmas with our family from Ashtabula. The time leading up to Christmas was very exciting for Zachary because it is all so magical for him (he's four), so he loved watching all of the Christmas movies, reading Christmas stories, and he learned several new Christmas carols at preschool this year. They practiced their songs with musical instruments, too, and he very seriously came home each day and told us all about "school band practice" and sang for us. We also received our first hand-made school present from Zachary, a little wooden elf ornament with his face in place of the elf's face - it was so adorable and he was so proud of it! Jeremy enjoyed all of the Christmas lights and decorations, but at 18 months he really didn't understand the excitement to come. He did love to see any pictures, decorations or shows about Santa or "Danta" as Jeremy calls him. Jeremy was much less enthused about sitting on Santa's lap, however, and he screamed while meeting Santa at Zachary's preschool, and he screamed again while visiting Santa at the mall. Our picture of the boys with Santa is hilarious, though - Zachary is trying so hard to hold his smile and Jeremy is crying his eyes out and trying to get away. He probably won't find that picture as funny as we do when he gets older - haha! Anyway, we all had such a great time visiting with family and spending time in Ashtabula. Being up there also allowed us to be able to visit Benjamin at the cememtery. Brian and I talked many times about how hard it was to believe that this was our second Christmas without Benjamin, and we wondered what kinds of toys and games he would have wished for this year. He would have loved being the ring-leader of his two little brothers. As with last Christmas, it was hard to kick off the season with decorating and shopping, etc..., but once we jumped in and saw how much fun Zachary and Jeremy were having it got a litte bit easier. For us there is always a big Benjamin-sized hole in our hearts and in all that we do as a family, but for the little boys Christmas was still so special, and when we look at it all through their eyes we are able to truly find happiness in the holidays and celebrate with them.

Now we are settled back in at home, enjoying the last bit of Christmas vacation, and looking forward to the New Year. We are also thrilled to tell you that Baby Jones #4 should be making an appearance this summer! The morning sickness has been much less than thrilling, but it is all so worth it in the end! Brian has been shouldering much more than his fair share of the load, and Zachary and Jeremy have helped out so much by playing nicely with each other and entertaining each other. Just after Thanksgiving Zachary told us that his Christmas wish was for a baby, so it was very exciting to be able to tell him the big news shortly after that. He was so funny though because he said "Wow, I didn't know that Christmas wishes really do come true! Next time I'm going to wish to be taller!" That kid always keeps us rolling! Jeremy is at an age now when he is very interested in babies, but we'll see how interested he is when it is a live-in baby (he's quite a mama's boy - which I secretly love!). I'm afraid he has no idea how his little world will be rocked, but we're hopeful that they will be great playmates as well someday - haha!

Well, that is about all of the news from our house. We'd like to thank you for still stopping by to check on our family - that really means so much to us that Benjamin, and our family, are still thought of and prayed for. We wish you all a Happy and Healthy New Year!!!

Love, The Jones'

Friday, September 1, 2006 4:52 PM CDT

Dear friends,

It is so hard to believe that today Benjamin would have turned 10 years old - double digits!! We were able to visit Ashtabula this past week, so we went to Mass and the cemetery yesterday for Zachary to leave his gifts for his big brother. He brought a SpiderMan action figure riding a motorcycle and a little flag that spells out LOVE with hearts around it. We're back at home now and thankfully Brian was able to take a little bit of time off now during Benjamin's birthday week. Our plans had been to go to the Columbus Zoo and Wyandotte Lake water park, but the weather here in Ohio just didn't cooperate today. We spent the day as a family, though, so that is all that matters. Tonight we're having Benjamin's favorite for supper - tacos!! - and after dinner we'll have a little cake. We weren't sure whether to have cake or not, but Zachary thought that we should since it is Benjamin's birthday, and we agreed that today really is a day to celebrate. As very sad and difficult as it is not to have Benjamin here, being healthy, happy and another year older, there is no way that we can look back on this day ten years ago without sweet memories of absolute joy. I wasn't sure what to say in this update, so I thought I'd look back through Benjamin's baby book to remember such a wonderful day. I went into labor at about 3:45am on Sunday, Sept. 1, 1996 - three weeks before Benjamin's due date - and we headed for St. Ann's Hospital. Benjamin was born at a little past noon at 12:17pm, and he weighed 6 lbs. 4 oz. and measured 17 1/2 inches long (he was a tiny little peanut). The first comment that Brian and I (and everyone else who first saw him) made was "Look at all that hair!" because he had lots and lots of curly black hair all over his head. He had beautiful blue eyes, and they stayed beautiful blue eyes as you can see in his picture at the top of his web page. Shortly before Benjamin's birth I had seen some movie about babies being switched at birth, so in my hormonally charged state of paranoia I sent Brian back to the nursery with Benjamin and told him to follow the baby's every move and never to take eyes off of him. When Brian came back to my room a short time later I asked him what he was doing back here when he was supposed to stay by the baby. Brian just laughed and told me that there was no way anyone was going to mix up our baby when Benjamin was the only baby with hair, the only baby with a tan, and the only baby boy in the nursery. The nurses just loved Benjamin's hair - they thought he looked like he was wearing a tiny wig - and since there were no girl babies in the nursery (at that time) they were dying to get their hands on Benjamin's hair to play with it and put little bows in it. Brian let them no that that was never going to happen - haha! They all had to come to a compromise, and the nurses decided to just comb and style Benjamin's hair, and they gave him a big part in his hair to match the same side as his Daddy's hair was parted at that time. Later when I was able to take a walk down to the nursery with Brian I had to agree that there was no way Benjamin could be confused for any other baby in there - haha! That day was a perfect day and will always be remembered as one of the best days of our lives (along with the birth days of Zachary and Jeremy).

It is so sad to see the end of summer coming since we've really enjoyed every bit of the summer with the boys. Zachary took golf lessons and swimming lessons - swimming definitely won out as the favorite. For the golf lessons Zachary was really eager to try, and he did learn quite a bit (it was just for two classes), but maturity-wise he was not quite there. He was the youngest in the class, and while the others were intently watching the teacher demonstrate moves, Zachary was often looking up at the sky, watching other golfers out at the driving range, watching traffic going by, etc...he was adorable to watch, though, and when he went out to practice with his Daddy a few weeks after the lessons were finished he at least did have a pretty good idea what was going on. The swimming lessons were a HUGE success, though. Before lessons we weren't even allowed to put the stopped down in the bathtub, and by the end of the two-week session Zachary could swim under water, he was learning a couple of strokes, he would willingly dive under water to retrieve objects from the bottom of the pool, and his favorite thing of all was jumping into the pool. We were stunned and so happy to see the complete turn-around. The massive crush he had on his teacher really inspired Zachary to try anything she asked of him - haha! The next big thing for him is starting pre-school this year - he is a little bit nervous, but very excited. I'm dreading letting him go just because I'm going to miss him, but it is only for a few hours a day, three days a week. He is also getting ready to start soccer - for the first time - so he is very excited to be on a team. He told us "I just want to be on a team, any team, I don't care what it is." When we said that soccer season was coming up he said "OK, that's the one, I want to play soccer!!!" Hopefully he will like it, but we figured we would just let him try out different sports and things until he finds something that he's really interested in.

Jeremy - the big one year old - is a fun-loving, wild little man. He walks around so fast that he's almost running (and he goes at that speed ALL day), and he has some little words that he says - "Dada", "Mama", "Za" (for Zachary), "no,no,no" (which we hear far too often - haha!), "all done", "ni-ni" (for night-night), and "do" (for dog). He had lots of fun in the pool this summer, too, and being outside with his brother. He is so different from the older two boys - Jeremy eats everything in sight (they never did that), especially fuzzies, crumbs off the floor, bugs, grass, etc...so he really keeps us on our toes, but he is also just the sweetest little boy. His new thing is giving really big hugs, real sqeezes, and blowing kisses to us. He adores his big brother, and he tries to do everything Zachary does. We often wonder what the three of them would have been like together - Benjamin would have loved being the ringleader with Zachary and Jeremy following along. Zachary already tells Jeremy about Benjamin. He shows Jeremy pictures of Benjamin and tells him that Benjamin is his brother, too, but he just lives in Heaven. Jeremy recognizes Benjamin whenever he sees his pictures - he always gets this big grin on his face and points at Benjamin. Right now Jeremy is waving to me and saying "all done, all done" over and over again, so I guess he has reached his limit of waiting for me to finish this update - haha!

Thank you so much for continuing to stop back to visit us and see how the family is doing. The e-mails, guestbook messages, cards and phone calls have always meant so much to us. That kind of support is just priceless!!

Happy 10th Birthday to Benjamin!!

Love, The Jones'

Saturday, June 10, 2006 11:34 AM CDT

Dear friends,

Thank you for stopping back to check on us - we hope your summer is off to a great start. We're doing alright here. Benjamin's stone at the cemetery came in last year, but couldn't be sealed until warmer weather this spring. The stone is now sealed in place and his Gramma Jones is doing a wonderful job keeping things pretty by planting flowers around his stone and taking care of his spot which we really appreciate. (Benjamin was buried in our home town of Ashtabula since our move to this area came as a big surprise nearly 11 years ago, and we knew that if he was buried here in Pickerington we'd never be able to leave if we ever had to move again. Ashtabula will always be another "home" for us, most of our family is all there and we visit often, so we knew that we'd always be connected there. We chose a spot with three plots for him to be between Brian and me.) Zachary is looking for a pinwheel to bring for Benny on our next visit - Zachary always brings something new to the cemetery to give to Benjamin.

Not a lot is new with us, we're just happy for sunny days and warmer weather to be able to enjoy being outside - Zachary LOVES to be outside every minute of the day that he can. It has been so nice to fill up his little pool and watch the boys play in the water, go for bike rides and long walks, and just sit outside and enjoy watching the boys play - very simple, but extremely treasured moments. Zachary turned four years old on April 16th, and he seems like such a grown-up boy now. He is very funny, and loves to entertain everyone by being silly. He talks about Benjamin every day and misses him a great deal, but overall we think he's doing alright. Jeremy will be one year old on Monday, June 12th, which is so hard to believe. He has grown and changed so much over the last year - he's his own little guy, but he looks very much like Benjamin, which we know would have thrilled Benjamin - he loved the whole idea of Mini-Me - haha! Jeremy started walking when he was about 10 1/2 months, so he's getting around pretty well now, and we love watching him charge all over the place, getting into one thing after another. His teething has been rougher than it was for both of his brothers, but he finally got a new tooth on top two days ago (bringing the grand total up to 3 - haha!), and he has another tooth right on the verge of coming through. He loves to wave to all the neighbors, take rides in his little push car, and play, play, play. Zachary can finally see the light that Jeremy might actually be a fun little playmate and buddy instead of just a helpless little baby - he was expecting a ready-made friend last June 12th, I think now he sees the potential - haha!

Thank you for still thinking of us and stopping to visit Benjamin's page. Your thoughtfulness and prayers mean so much to us. We're doing alright and trying to move forward as best we can through the start of this second year without our Benjamin.

We also have a new e-mail address listed below.

Love, The Jones'

Thursday, April 6, 2006 12:09 AM CDT

Dear friends,

Sorry it has been awhile since we've been around - we hope all is well with you. It has meant so much to us to receive special phone calls, e-mails, guestbook messages and visits as we are coming up on the one year date since Benjamin died - April 7, 2005. Knowing that he is still remembered by others has helped us to get through what has been a difficult week, so far, and what will I'm sure be an emotional day tomorrow. Our plans to mark the day and to celebrate Benjamin's life include going to Mass tomorrow morning (Mass intentions are for Benjamin), letting the boys release some balloons for Benjamin (that seems to be something that Zachary really enjoys doing), and hopefully, weather permitting (it is supposed to be in the low 70's tomorrow, but it may rain) making a visit to the zoo. Benjamin loved going to The Columbus Zoo, and we made many family visits, and also he and I used to take off for little trips to the zoo on pretty summer days. He was our only child for five and a half years, essentially up until he was diagnosed because Zachary was born three weeks before his diagnosis, and we have so many sweet memories of times the three of us spent at the zoo. He loved the monkeys the best so we will have to pay them a visit in his honor. We're also hoping to find a very special brick at the zoo that was given to Benjamin by a very special, but anonymous, friend. We received a letter about his brick just days before he died, and we know that the brick reads - "Benjamin, Zachary, and Jeremy - brothers forever." We also know that it is located somewhere near the food court which gave us a big laugh at the appropiateness of that location.

Today has been very teary already, so I can't imagine how tomorrow will feel. Realizing that a year ago today was the last time we heard Benjamin's voice hit hard. At that time Benjamin was so weak, but he still couldn't resist trying to "play wrestle" with his Daddy as they sat in his bed together. When Brian told Benjamin that he had to stop for now Benjamin replied "I'm tougher." One last bit of trash talking for his Daddy, and also that was the last real talking he did aside from "yes" and "no" answers he gave to our questions that last day. Those words, even though he said them as a joke, were so true and fitting of Benjamin and his nearly three year fight for life. Words can't really do justice to how proud we will always be of him and how much we admire his strength and will to live. We started his webpage at a time when he had almost completed his treatment, so many people don't know just how much he went through during that year of diagnosis, surgery to remove his tumor, an initial round of chemo, stem cell harvesting, bedside emergency surgery to tap the rapidly building fluid in his brain followed by more surgery to place a shunt to permanently drain the fluid, weeks of radiation, and then followed up with more chemo and three stem cell rescues. He didn't eat for about 8 or 9 months (he was fed by TPN feedings and then later by an NJ tube), and he began every single morning during that entire time getting sick in the bathroom before even starting his day. At the same time he kept up the most amazing and positive attitude and kept forging ahead - we have no idea where he got that kind of strength and determination at only five - six years old, and we wish that we had just a little bit of that strength for ourselves to help us through his loss. We have so much admiration for him because during that whole time he just couldn't seem to catch a break, but he never saw it that way. It was so frustrating for us to have to cut back his chemo and treatment because it was literally killing his liver and would have been far too toxic for him, and yet have to explain to him that he couldn't have more chemo when he asked for more so that he could be well. He was always ready to fight. While we miss him tremendously, we're so relieved that he no longer has to fight. We know in our hearts that he is healthy, happy and free now. Letting him go was the hardest thing we've ever had to do, but the tiny smile that came over his face as he died, and remained frozen there until he was brought to the funeral home, gave us the peace of mind to know that he felt that release and happiness to go where he was now going. It was beautiful to see that smile, and it was made all the sweeter because of the fact that he hadn't smiled those last few weeks of his life because he had a flat affect due to the pressure from the brain tumors. Even when he was happy during that time his tone of voice and facial expression never showed that happiness. We never thought we'd see his smile again, but to see him smile as he left us let us know that he was safely in Heaven and his struggles were now over.

Tomorrow will be so hard, but we'll spend it as a family, and we have all the love and support of our family and friends. We never could have made it through this last year without everyone. We thank you so much for loving Benjamin and for loving us and praying us through this year.

Love, Anne, Brian, Zachary and Jeremy

Sunday, February 5, 2006 7:49 PM CST

Dear friends,

Please keep two little friends in your prayers - Christi Thomas (a link for her page is at the bottom of Benjamin's page) and Ian McCollister (www.caringbridge.org/oh/ianthegreat). We met both of these children and their families during the time when Benjamin received treatment at Columbus Children's Hospital. Both families have been dealing with difficult news and heartwrenching decisions, and I'm sure all of the extra prayers and support would be appreciated.

Just a little update to let you know that Brian has lots of new pictures up on the photo page. Many of you knew Benjamin before he got sick, but for those new friends who didn't know him then, these photos are from a time when all was right in Benjamin's little world - and in ours. We've really wrestled with deciding what we should do with Benjamin's web page. Many times I sit down at the computer, but the words just won't come to me. Brian and I have both enjoyed sharing the photos of Benjamin, though. After a lot of thought we decided that maybe we'd leave his web page up, continue to add new pictures, and maybe share more in detail the story of Benjamin's diagnosis and following treatment (I don't think we ever fully explained how we got to this point since we started his web page at a point when he was nearly finished with treatment). We thought this might be helpful to other parents facing similar situations since we know that after learning of Benjamin's terminal diagnosis we searched everywhere for information or stories about how other families deal with a terminal diagnosis and then how they deal with their loss. We were looking for some kind of proof that it is possible to continue to wake up each morning and live, eat, breathe, laugh again and get through each day. We have really appreciated the openness and generosity from other grieving parents who have helped us tremendously to understand that the emotions, the ups and downs, etc...that we're experiencing are normal, and also we have received a lot of great ideas and helpful advice on ways to help Zachary express not only his sadness, but also ways for him to celebrate and remember his brother's life. That help has been so valuable to us, and we hope we can do the same for others.

Now for a little update on the boys. Last week Zachary went on a little tour of the pre-school he will go to this fall, and he was so excited about it. He made some new little friends and wanted to stay for the whole morning. We only hope he is that eager come this fall! Jeremy is almost 8 months old, and he's working so hard to get some little teeth. He's started saying "ma ma ma" and "da da da", and Zachary can't wait for Jeremy to be big enough to run around and play with him.

Brian and I are doing alright, some days are much harder than others. In two months it will be a year since Benjamin died, and in many ways the pain is deeper than ever. Now, after many months, we are better able to go about the day to day business and details of life, and the moments that jump out to slap us in the face with reality don't come as often, but when the moments do come they are much more painful and intense. Many people have told us not to be surprised if next year is even harder than this first year since Benjamin's death has been, and it really seems to make sense why this would be. This year it has still seemed like kind of a surprise that Benjamin isn't here celebrating holidays with us, going off to school, playing with his brother or his cousins, etc...but as time goes on the shock and surprise is wearing away, and the finality of the loss sinks in. Thank God for Zachary and Jeremy! We know that they were born for their own special purpose that is separate and apart from what has happened in our lives, but we truly believe that there can be no coincidence in the timing of when we were blessed to receive them. Zachary was born three weeks before Benjamin was diagnosed, and Jeremy was born two months after Benjamin's death. Zachary and Jeremy have brought so much light and joy to lift us out of the darkest days we've ever known. There is no way we could stop believing in life and miracles with them around. Going over to Zachary's new pre-school reminded me of how much fun we have to look forward to for him - new friends, playdates, class parties, field trips, show and tell, and more. Seeing Jeremy learning something new each day reminds of the sweet and simple pleasures of baby milestones - crawling, walking, talking, playing. There is always a little pain in our hearts when we think of what Benjamin is missing out on in life and what we're missing out on from him, but there is still so much happiness in our lives.

Love, The Jones'

Wednesday, January 4, 2006 1:53 PM CST

Dear friends,

Happy New Year to you all!! We hope that you all enjoyed the holidays. We spent an extended vacation in Ashtabula with our family during Christmas, and it really was special for Zachary and Jeremy while it helped all of us get through our first Christmas without Benjamin. The boys loved having lots of playtime with all of their grandparents, cousins, aunts and uncles, and we really enjoyed the company and support from all. I guess we were a little bit naive about just how hard the holidays would really be - beginning a new year without Benjamin was even more difficult than Christmas was. Benjamin's stone was placed at the cemetery while we were home, too - we were so grateful that we were able to be there to see it. The stone came out so beautiful and so fitting for Benjamin - we were really pleased with it, even though it was very sad to have this final piece of the process completed. Zachary always likes to bring something to Benjamin when we go, so he was happy to bring a little Christmas tree to stand beside Benjamin's stone. We found little ornaments with all of the boys' names on them, so we decorated the tree with those and lots of little red bows.

Now we're back home and trying to get back into our routine. Zachary is having lots of fun playing with his new presents and looking out for his little brother. Jeremy has had a few "firsts" over the holidays - while we were gone he started sitting on his own, and he also started reaching for people when he wants to be held. Then when we got home he rolled from his back to his belly and then from his belly to his back all in one day, but I guess that must have satisfied him because he hasn't shown a bit of interest in doing it again. I guess he proved it to himself and that's all he needed- haha! Thanks for checking in on us!!

Love, The Jones'

Sunday, November 20, 2005 4:22 PM CST

Dear friends,

**Brian updated the photo page with lots of pics - some old and some new**

I hadn't planned to update again this soon, but we had such a nice experience last night that has kind of helped us to get ready for the upcoming holidays that I thought I would share it. We decided to go ahead and put up our inside and outside Christmas decorations (but not plug in the lights yet) since our weather was pretty mild this weekend. We always love to have the decorations up, but the job kind of loomed ahead since this is our first time without Benjamin, and the memories seem so fresh from decorating with him last year. While our ambition was up I was looking around in the basement for all of the decorations. I felt a little bit guilty about celebrating the holidays without Benjamin, so I was silently "talking" to Benjamin as I dug around downstairs. I told him not to feel like we've forgotten him or that we don't care, but we just have to make the holidays happy and special for Zachary and Jeremy. One of our biggest worries is that years from now we'll find out that the boys couldn't wait to grow up and get out of here because this house was so overwhelmingly sad. I said that we'd put Benjamin's ornaments up first and that he would always be a part of everything that we do. After that I felt a lot better about starting our project, and we got to work bringing everything up to the living room. Just a few minutes later I opened the big Rubbermaid tub that holds most of the decorations, and sitting right on top was a box of Benjamin's baby toys - rattles, teething rings, links, tub books, etc...We looked everywhere for that box for I don't know how long when Zachary was born so that he could have those toys, too. We went through boxes and tubs in the basement and the garage looking, but we never could find it. We've even moved - TWICE - since then. You'd think we would have noticed the box before this. The big tub it was in is the same tub that holds all of the Christmas decorations, so I'm in and out of it year after year, but we never found the box before. Plus, the little box was the only non-Christmas item in the tub. I love Brian's explanation for the appearance of the box - since Benjamin loved Christmas and he was always my little helper putting up all of the decorations, maybe this was his way of still being part of it with us, and maybe this was his way of sending a very special present to Jeremy since they never were able to play together. Maybe there is some simple explanation for it, but this one makes us happy and it made our decorating last night a joyful experience rather than a sad and somber one. Pulling each little toy out of the box brought back the most beautiful memories of Benjamin as a baby - there was a lot of laughter and the whole experience really put us in the right frame of mind for the holidays. We're trying - the holidays will still be difficult, but maybe Benjamin is giving us his blessing to be happy again.

The Children's Hospice remembrance service was really lovely. Their choir did a beautiful job, and it was so nice to see all of our friends from hospice - they are quite a special group of people. Benjamin's name has been added to the quilt now, and in some ways it did feel like the end of a very sad chapter.

We hope you all have a Happy Thanksgiving!!

Love, The Jones'

Tuesday, November 8, 2005 6:23 PM CST

Dear friends,

We just wanted to send out a little update before the start of the holidays. We're looking forward to those special days, but also knowing that it will never be the same without out Benjamin. Our youngest two boys continue to remind us that we have so much to be thankful for, still so many things to look forward to, and to keep moving forward while always remembering the special times we had with Benjamin. The holidays will be very difficult, we know there is just no way around that, but we try to keep our focus on making the happiest and best life possible for Zachary and Jeremy. Yesterday was seven months since we lost Benjamin, and in some ways this time has gone by so quickly and in other ways time has stood still. We're doing a little bit better about getting out of the house more and trying to do special things as a family. Today we signed Zachary up for The Little Explorers group here in town, and next week he has his first trip to go behind the scenes at the police station. There are several little outings, and Zachary is really excited - he's pretending this is his "school." We did so many things like that with Benjamin when he was little, but Zachary just hasn't had a chance yet. We're really looking forward to doing these same kinds of things with Zachary and watching him grow and blossom more. He has really made big strides in the last six months. Zachary had lots of fun trick-or-treating for the first time (last year he just rode along in the wagon). He was so funny, though, because he was concentrating so hard on remembering "trick-or-treat" and " thank you" that whenever anyone asked him a question - like how are you? or who are you dressed as? - he was totally thrown off track and didn't know how to answer. He also thought that he was supposed to start off the night with his own candy, and I came out to the dining room to find him stuffing the candy from our baskets (to pass out) into his own basket.

Jeremy is growing bigger and bigger all the time. He is such a sweet baby, and we love just watching him smile. We have to laugh at how much he's grown from the tiny little 4lb 15oz baby that he was - now he's so chubby that he's wearing 6 - 9 month outfits (he will be 5 months old on the 12th) and he literally has no ankles - his little legs are that pudgy - haha. He is becoming so interested in watching the antics of his big brother, and Zachary takes his big brother job very seriously. If Jeremy cries Zachary tries to make it better by singing to the baby. Of course we can't seem to convince him that the baby would probably like Zachary's singing more if he would just back up a few inches from Jeremy's face and not sing at the top of his lungs - haha! - but it's the thought that counts!!!

Brian and I are doing alright. We have our days when we can kind of coast along pretty well, and of course lots of other days when we feel very down and lost without Benjamin. This weekend is a special remembrance service at Children's Hospital that is put on by Children's Hospice for all of the children who have died in the past year. The Hospice Dept. has a special memorial quilt that is always on display outside of their offices, and this quilt has the names of each child on it. On Sunday Benjamin's name will be one of the new names added to the quilt. We are planning to attend the service as a way to honor Benjamin and to bring some closure to our time spent at Children's for Benjamin's treatment. Brian has been back to Children's once since Benjamin died, but I haven't been back since a year ago November when Benjamin had that last scan that told us that the last hope chemo had been unsuccessful in stopping his cancer, and we were left with nothing more to treat Benjamin's very aggressive and advanced cancer. Honestly, I'm so afraid of going back to the hospital, and I have a very difficult time just driving past the hospital. I've been doing a lot of praying for Benjamin to send some of his tremendous courage our way so we can get through seeing his name be added. We've decided that this is something we have to do, though, because Benjamin fought so hard, and he deserves to have his battle be acknowledged. He was at Children's so often (every single week - sometimes 1 -3 times a week when he was an outpatient, I can't even imagine how much time he spent there when he was admitted and during those times he was very often horribly sick) and so much of the time he was there for treatments and check-ups that couldn't have been enjoyable and he didn't always feel well. He never complained, never fought us about getting in the car and going back, and he always made the best of things. If he could do all that, then we can walk back through those doors as well. We are looking forward to seeing the wonderful people from Hospice who took such amazing care of Benjamin (and all of us really) for nearly a year.

Please continue to keep Brant Hamilton's family in your prayers.

Thank you for stopping by! Brian added some new pics on the photo page just before Halloween, and we're going to try to add new ones more frequently (we didn't this time, though - sorry!!) I had read on another child's web page that her family was adding pictures of her through the years, especially from the time before she had been sick, and we thought that was a great idea to do. We know that so many people only know Benjamin from the time during his illness, and we wanted to show everyone, who didn't already know him, a little glimpse of the boy from before all that started.

Love, The Jones'

Tuesday, November 8, 2005 6:23 PM CST

Monday, October 31, 2005 10:26 AM CST

Dear friends,

We are very sad to pass along the news that Brant Hamilton,the precious son of Craig and Julie Hamilton, has died. This sweet, brave young six year old boy showed amazing determination and a will to live his life to the fullest every day. Please keep his family in your prayers as they have the first of many difficult days ahead with Brant's visitation and funeral. There is a link for Brant's web page listed above if you'd like to stop by and leave a message of support for his family. Just knowing that so many people are thinking of your son and praying for your family really does bring a tremendous amount of comfort during such a horribly sad time. Thank you for keeping the Hamilton's in your prayers.

Love, the Jones'

Tuesday, October 18, 2005 12:01 AM CDT

**Update Oct.30, 2005 New pictures
from the past Halloweens (Benjamin ages 1 -8)**

Dear friends,

Please keep Brant Hamilton and his family in your prayers as Brant continues to amaze everyone with his strength and determination. Even after the family learned that Brant may only have hours or days left, he has continued his battle and has even had the strength to talk a little bit and smile. Those little moments are priceless and mean everything! A link for Brant's page is listed above - please keep this sweet little boy and his wonderful family in your prayers.

We are settling back in here after spending a few weeks in Ashtabula with all of our family. Brian had two business trips back-to-back, so the boys and I enjoyed a much needed get-away and lots of fun times with family and friends. Brian and I also went to our high school reunion - 15 years!! - and we had the best time! The activities were spread over two days, and it was so much fun to see everyone and catch up on how everone is doing.

The boys both had doctors appointments last week - Jeremy's 4 month appt. and Zachary's allergy follow-up. Jeremy weighs 14 lbs 14 oz (he falls right in between his brothers at this age - Zachary was 12lbs 13 oz and Benjamin weighed in at a whopping 18 lbs!!), and his doctor was pleased with his progress. Zachary is doing better on his new allergy medicine, but we're still looking for a home for the kitties so hopefully he can come off the medication. He's doing well, and he finally settled on his Halloween costume - Cowboy Woody from Toy Story - he is so excited!! Zachary also made the big move from toddler bed to big-boy twin bed, complete with his beloved Cowboy Woody on his comforter. He's pretty impressed with himself, but he makes us nervous because he's quite a traveler while he's sleeping - I found him curled up at the end of the bed this morning.

That's about all that is new here with us. Thank you for stopping by to check on us, and thank you for the prayers for our family and for Benjamin's friends.

Love, The Jones'

Tuesday, October 18, 2005 12:01 AM CDT

Friday, October 7, 2005 10:33 AM CDT

Dear Friends,

We just wanted to send out a quick update as today marks six months since Benjamin died. It is almost impossible to believe that half of a year could have gone by without him here with us. Our family is doing OK, but we miss him more and more every day. For the longest time it seemed like Benjamin was just away somewhere, like at school or a friend's house, and would be walking back through the door anytime. As time has passed that feeling of expectation that he would be home soon has slowly faded, and in its place is deep sadness and longing to see him, hug him, and just hear him talk with us again. He was the funniest little guy, and we so greatly miss his personality and sense of humor. We talk about him and share stories about him all the time, and Zachary still has something to say about his big brother each day, as well. Sometimes he says "I just miss Benny," but most of the time he brings up something happy that he remembers about Benjamin or silly stories about things they played together. Even though Jeremy never met his big brother in person they seem to have a special connection anyway because Jeremy loves to look at Benjamin's picures on our walls, and for the longest time those pictures were the only ones he smiled at. Jeremy would get the biggest grin on his face and make all those cooing baby sounds at only Benjamin's pictures. We decided that has to mean something good!!

We've been visiting our family in Ashtabula, and it has given us the chance to visit Benjamin at the cemetery anytime we want. Zachary wanted to bring over some pumpkins for his brother, so this week we took over some little jack-o-lanterns and a Darth Vader action figure (that was who Benjamin had planned to be for Halloween this year). Zachary always likes to have something to bring for his brother - a balloon, a flower, a toy...any kind of little gift - it is very sweet.

Thank you for continuing to keep us and Benjamin's friends in your prayers, and we have wonderful news to share about answered prayers for Jake Beresh and his family (his link is on Benjamin's page). After a very frightening two weeks of waiting for news, the pathology reports came back and everything is all clear!!!

Please keep Brant Hamilton and his family and Christi Thomas and her family in your prayers, too. Both children have links on Benjamin's page.

Thank you for all of your caring, prayers and support!!

Love, The Jones'

Monday, September 26, 2005 10:26 AM CDT

Hi everyone!

We'd like to ask you to remember some special friends of ours in your prayers. Please pray for Brant Hamilton that he has peaceful and pain-free days to spend with his family. Also, for Jake Beresh as he undergoes more scans this week after his latest scan showed something that could either be the result of infection or from tumor growth. We also ask for prayers for Christi Thomas who will be leaving home for her latest scans after finding out that her disease had progressed. Thank you so much for praying for these children and their families - the prayers and guestbook messages mean so much to families who are dealing with the devastation of cancer.

Not much is new with our family. We've been enjoying the last warm days of summer going into fall. Zachary is starting to put together ideas for Halloween - this will be his first year to really trick-or-treat. He dressed up last fall and went around with Benjamin, but he just rode in a little wagon instead of going up to each house. He thinks he would like to be Woody from Toy Story or Bob the Builder. We have a little pumpkin sleeper for the baby just so that he can be a part of it all, too. We think of Benjamin constantly, but this time of year holds so many memories and thoughts of what might of been for him. We go from his birthday in Sept., to back to school time, to Halloween, and then into the really big family holidays of Thanksgiving and Christmas. Benjamin wanted to be Darth Vader for Halloween this year, and last year for Christmas he had received a Darth Vader mask with voice changer (he loved doing the heavy breathing and making his voice sound like Darth Vader). He and Zachary took turns wearing that mask around all the time, except that Zachary looked more like Dark Helmet (for those of you who remember the movie Space Balls) - haha! The first little boy who comes trick-or-treating at our house wearing a Darth Vader costume will probably be really puzzled about why he's getting heaping amounts of extra candy, but in my mind I'll be picturing my little guy wearing his outfit.

Benjamin's stone for the cemetery should be in sometime in the next few weeks, and things will probably really hit again at that time. Sometimes it still doesn't really feel real that this has all happened, but his marker with his picture on it will probably make it all more of a reality. His stone will really be a family marker since he is buried between where Brian and I will eventually be, but the back of the stone is dedicated just for him. Anyone who knew Benjamin knows how much he loved WWE and his wrestler guys (as he called his action figures) so the back of his stone will be engraved with a wrestler belt and in the center of the belt will be Benjamin's picture with the words CHAMPION written underneath. It may sound a little bit funny, but knowing Benjamin it is perfect for him. Anytime he had extra money he always bought a new wrestler belt which he would then wear around everywhere. I don't know how many of those belts he had finally - at least five or six. We'd always ask him why he wanted to buy another one when he had so many at home, but he always said "I just need it." The front of the stone will have our family name on it and an etching of Jesus holding a little boy in his arms - it is a very comforting thought for our son. We're looking forward to it all being completed and made special for Benjamin.

That's about all that is new with our family. Thank you for continuing to stop in to see how we're doing, and please pray for these courageous little kids and their families - the links for all three children are on our page. Thank you again!

Love, The Jones'

Thursday, September 1, 2005 12:18 AM CDT

Dear friends,

**Updated photos**

We'd like to thank everyone so much for all of the thoughts, prayers, phone calls, e-mails, and notes to wish us well in remembrance of Benjamin's birthday today. That kind of love and support is what helped us get through the three years since his diagnosis and the nearly five months since his death. We are doing alright, but missing our guy more and more every day. As I told a friend, it has been a bittersweet summer, but we are trying to focus on the "sweet" as much as we can. It is so hard to believe that today Benjamin would have turned 9 years old! It is kind of hard to know what to do on a day like this, but we're trying to just make this a day to honor Benjamin. We went to church this morning with our family, and Mass was said in Benjamin's memory. Then we went on to the cemetery. The base for his stone is in, but the actual stone won't be ready for another month or so. We brought over some birthday balloons to add to the balloons and flowers that were already decorating his stone. We brought four balloons - two green balloons (Benjamin's favorite color) for Zachary to let go of, and two balloons to leave there. Zachary was very cute last night when we talking about picking out the balloons. Brian told Zachary to remember that he couldn't mess around with the balloons, and Zachary very seriously told his Daddy that these balloons aren't for playing with, they are for sending to Benjamin for his birthday. He really enjoyed letting the balloons go and sending along a Happy Birthday wish and an "I love you!" for his brother. Today we are going to look for a statue of an angel to place with his stone, so we will probably go back over to the cemetery again tonight when we find one.

It is such a beautiful day here, and as sad as we are not to have Benjamin with us, we're just trying to focus on knowing that he is OK now - no more sickness, no more medicines - only peace and healing for his body. The sadness is something that we can never let go of, but we're also finding that our sorely tested faith is stronger than it has ever been, and with that comes a peaceful feeling for us in knowing that Benjamin is alright now.

The two little boys are growing and doing well. They both had check-ups two weeks ago - Zachary finally had his three year appt. and Jeremy went for his two month appt. Zachary was a little bit worried about this appointment, but he's since decided that going to the doctor's is OK - they didn't give him a shot this year, that explains the turnaround - haha! He didn't want to leave the office (which is first ever!) and by the time we left he was standing at the office door with one of the nurses greeting patients - they were calling him their "Wal-mart greeter." His only problem is his allergy to our cats, and he has started taking a new allergy medicine. As much as we hate to admit it, it is probably going to be necessary to find a new home for our two cats since he's not outgrowing this allergy. Zachary is continuously stuffy, and he sneezes and coughs a lot. What scares us really is that while he's eating he can't breath through his nose so he breathes through his mouth and occasionally inhales some of his food and chokes a little bit. That was the clincher for deciding that we need to do something about finding a kitty-cat home for Sam and Bertie. Jeremy has "definitely rebounded", in the words of his doctor after taking a look at this baby who weighed in at 4lbs 15 oz just two months ago. He's now over 11 lbs and looking pretty chubby - haha! He's a very good little baby, and we're all just loving every minute of watching him grow! He's smiling more and more, making little "talking" noises, and getting stronger and better able to hold his little head up without wobbling all over the place.

That is about all of the news from our family. We're getting through each day, one at a time. When Benjamin died we couldn't imagine how we would make it through even one day without him here with us, and there are a lot of days that are very tough to get through. It doesn't seem possible that almost five months have passed. Some days go by with mostly good moments all day, and other days have little things that set us off crying off and on all day. Even on the days that are mostly good days there is always an emptiness from missing Benjamin. We just keep telling ourselves that the separation is only temporary, and someday we'll have our family all together again. We appreciate all of the prayers for our family, and we'd like to ask you to keep our little friends in your prayers as well. Please remember Brant Hamilton and his family and also Christi Thomas and her family - both children have links on Benjamin's page. Christi's family just recently found out from her latest scans that her disease has progressed quite rapidly. I'm sure the extra prayers and support would be greatly appreciated - that has always helped us during the most trying and difficult times of Benjamin's illness.

Love, The Jones'

Tuesday, August 2, 2005 4:25 PM CDT

Dear friends,

Please keep a little friend of ours in your prayers, as Brant Hamilton's family has received the devastating news that his disease has spread, and they met with hospice yesterday. A link to his page is listed above, and we can absolutely tell you that prayers and guestbook messages mean so much when your family is struggling day by day to get through such a heartbreaking time. Just knowing that we were being thought of and prayed for helped us so much, and it continues to do so now, so if you are able to, please stop by and visit the Hamilton family and keep their little boy, Brant, in your prayers. Thank you so much!

There is not really much new here with our family. We just came back from spending two weeks with our families in Ashtabula, and it was so wonderful to get away for awhile and just enjoy visiting each other. We were able to go to the cemetery frequently to visit Benjamin, and his stone should be in in just a few weeks. Zachary has no fears or problems with going to the cemetery, actually I think he finds it comforting in a way - he sits down and talks to Benjamin, and then he makes his way around visiting some of the other little children who are also burried there. He brought a pinwheel and some little frogs to leave for his brother as well. Now when we visit and the pinwheel starts moving he says that means that Benny is there and can hear us.

Jeremy had his check-up before we left, and we were very suprised to find out that he already weighed nearly 8 lbs.!! We had just been hoping that he was near 7 lbs. He is such a sweet little baby, and we are just enjoying every second with him and soaking up every baby moment. I weighed him again yesterday, just out of curiosity, and he is now over 10 lbs. To see him now you would never believe that this little baby weighed in at 4 lbs. 15 oz. just seven weeks ago. Zachary has grown so much this summer as well, both physically and emotionally. He has gotten so tall and filled out so much - that little boy can really eat! And now he's becoming so independent. He's using the potty all the time now (m&m's were the key with him, too, just like with Benjamin - haha!) His enthusiastic slogan is "3 (m&m's) for pee and 5 for poop!!!" He's now willing to stay with family and friends on his own without the worries of whether we will come back. That was a big fear for him after Benjamin died - he'd ask all of us if we were coming back whenever we had to leave. He had always really been a mommy's boy and refused to go anywhere unless I went along too, but now he's going out to breakfast every weekend with Brian - he calls this "Daddy/Zachie Day," and he loves to place his own order with the waitress. He loves being a big brother and he does a very good job at it - he had such a good teacher, though! Zachary went to Daddy's work today while I had my follow-up appointment from having Jeremy. He carried his Toy Story briefcase (lunchbox), did his job, which he calls "markers." When I ask him what his job is, he just says "markers." He was carrying around his toy cell phone when I came to pick him up - just in case, so he wouldn't miss any calls - haha!! He was really excited to be given a real ID badge - an old badge belonging to one of Brian's friends at work - and he's still wearing it at home.

Not much is new with Brian and me. We're doing alright and focusing all of our energy on our boys. They are such sweet boys, and they have saved us from sinking too far into sadness. The sadness is still there, but Zachary and Jeremy continue to remind us that there are still good times to be had, there are still miracles, and that we have to continue with life. We miss our Benjamin so very much, and we know that we have another "first" coming up very soon with Sept. 1st being the first birthday that we can't celebrate with Benjamin. We really celebrated last year - we had a party at Chuck E Cheese, a party with his class, and a party with just the four of us at home. We stretched that birthday out and milked it for all it was worth last year. This year will be so different. It seems with every "first", though, that the days leading up to that big day are worse actually than the day itself when it finally gets here, so I wonder if that will be the case with Benjamin's birthday, too. It's hard, but we're getting through by supporting each other and from so much love and support from our family and friends - that means the world to us!!

Thank you so much for stopping by, and please pray for Brant.

Love, The Jones'

Thursday, July 14, 2005 6:49 PM CDT

Hi everyone!

We just wanted to send out a quick update to let you know that we finally have new pictures posted. For some reason they don't appear on our computer when we try to pull the pictures up, but we've been told by family and friends that the pictures are coming through when they click on the link. We've been having a lot of technical difficulties with our computer lately, and that's why it has been so long between updates and new pictures. Hopefully this will go through and the pictures will appear for you.

Jeremy and Zachary are both doing fine and growing so quickly. Zachary has taken so many big steps in the last few weeks - he's sleeping in his own room in his big boy bed, and he's using the potty (and very proud of it - haha!) He is having lots of fun being a big brother, and he's very protective of Jeremy. He calls Jeremy "his baby." Jeremy got off to such a teeny-tiny start, but he's catching up. He's one month old now, and he must be close to 7lbs. now. He goes in for his one month appointment this coming Tues., so we're anxious to see how big he's grown. His little face and body are filling out more and more each day, and as he does he is looking very much like Benjamin as a newborn baby. He has the black hair, big blue eyes, and even the dimples - he is absolutely his own little guy, but those similarities are a sweet reminder of such a wonderful time we had with his big brother nearly nine years ago. He has his own personality - which we call feisty, haha - and he's so sweet. He and Zachary are just the brightest spots for us, and they make us smile and laugh each day. Benjamin is always in our minds and our hearts, and we talk about him all of the time. On the fourth of July Brian and I each had a stroller to take the boys for a walk so we could get a better view of the fireworks display in our town. As we were walking along I commented to Brian about how good it felt to be out that night with our little guys, and Zachary came right out with "but one little guy is missing." Thoughts of Benjamin are always close-by for him, too, and he is so good about sharing that with us rather than bottling it up inside. We're all doing alright, but I can't honestly say that things have gotten any easier. I think that maybe time will be a healer someday, but that time isn't here now. The days are overall good days and are happy and normal and buzzing with the activity of two little boys, but the times when the sadness creeps in hit much harder than they did before. A thought of Benjamin, a memory, coming across an old picture of him, etc...can bring the sadness crashing back down, but I think that we're only just now beginning to process everything that he went through from the time of his diagnosis forward to losing him. That protective numbness is gone now, and we're not going on automatic like we were for so long. Even though he's gone we still feel so close to him and can feel him in our lives. We've been so lucky to every now and again see little signs that he's near, and we absolutely look for those signs and believe in them. Nothing will ever be the same as having him with us, but the little signs are such a comfort.

Well, we'd just like to thank you for still coming back to see how our family is doing. That really means a lot to us to have that kind of support! We hope that the new pictures are coming through for you to see our precious boys! We'll try to add some more pictures again soon.

Love, The Jones family

Thursday, June 16, 2005 1:25 PM CDT

Dear friends,

Hi! We're sorry it has been so long since an update, but we have wonderful news to pass along. We're so happy to announce the arrival of Jeremy Thomas Jones! He was born on Sunday, June 12, 2005, at 6:48pm. He weighed 4lbs. 15oz and was 17 inches. We had planned on updating Benjamin's webpage so much sooner, but the weeks up to Jeremy's arrival were filled with a little bit more drama than we would have liked, and we decided to wait to update until we knew for sure how it was all going to turn out. At my appointment about a week and a half before he was born my doctor found that I was measuring small for that point in the pregnancy, and an ultrasound two days later proved that. That ultrasound also gave us a bit of a twist for a few days because the technician who did the ultrasound thought that Jeremy was a girl. Jeremy was being very modest and kept covering himself with his hands and the cord was in the way, but every time the technician got a clear shot for a few seconds he said that he wasn't seeing what he should see. We all got a big kick out of this turn of events, and Benjamin had picked out both a boy name and girl name (Ava Elizabeth) so we were covered either way, and we knew that we would be thrilled with whoever came along. We were sent up to one of the high risk doctors at St. Ann's last week for a more high tech ultrasound to see what could be wrong with the baby that would make him so small, but nothing could be found. Then we were given the conversation listing the range of things that could be wrong, ranging from completely innocent reasons, like he was so little because of the stress of the past months, to a list of very scary possibilities. Needless to say we were beyond worried by this point, and my doctor planned to induce the baby this past Monday, but Jeremy had his own plans, and he decided to be born in his own time on Sunday (the day before the planned induction). He is a little tiny peanut, but everything checks out just fine for him, and we are so happy and relieved to have him here with us. We had been told beforehand that he would probably need to spend time in the NICU and not to expect to bring him home the same time I went home, but neither of those things happened - he was holding his own right away, and he stayed in the regular nursery. He kept up his own body temp., could breathe just fine, and he was able to come home with me on Tues. afternoon. In size he looks like a premie, but he is right on track for a baby born at 37 weeks, and the doctors said that his height and weight will catch up. We don't have any pictures posted yet, but we can tell you that Benjamin was completely right in how he called it. Before we even knew for sure that we were having a boy Benjamin got up one morning and told me about the dream he'd had the night before. He said that the baby was going to be a boy, he would look like Zachary, and he would have Benjamin's hair, and that is exactly how this baby looks. Jeremy looks just like Zachary did as a newborn, and he has lots of black hair like his big brother Benjamin. He also has big blue eyes like Benjamin, but we won't know for awhile if they will stay blue like his were. Zachary has brown eyes, and his never looked blue as a newborn - they were such a deep, dark color we could never really tell, but Jeremy's eyes are a bright blue like Benjamin's were. We're just so happy to welcome this little one into our family. It is also very bittersweet to think about how much Benjamin would have loved all of this - he truly loved being a big brother, and he had been begging for more babies since Zachary was still a tiny baby. It is so nice to have such a bright spot in our lives with Zachary and now Jeremy, but there will always be something missing without our Benjamin. He is such a huge part of daily lives, and always will be. We talk about him so much and will continue to do so for this baby. We also brought Jeremy home from the hospital wrapped in a blanket that had been Benjamin's favorite as a baby and toddler.

We'd like to thank you all so much for still stopping by to visit Benjamin's webpage, and for keeping us in your prayers as we waited for Jeremy to arrive. It is so nice to be able to share something joyful with you! We'll make sure to get some pictures posted of our new little guy. Thank you again for the continued prayers and support!

Love, The Jones'

Saturday, May 7, 2005 1:05 PM CDT

Dear friends,

Hi again! I know that I just updated briefly yesterday, but since I was able to find out a little more info. I wanted to fill you in. A friend of mine who happened to receive one of the questionable e-mails regarding Benjamin's guestbook printed off a copy so that I could check into it. From what we can tell the problem does not relate in any way to Caringbridge, but rather with the company responsible for the guestbook that was made available for people to sign from Benjamin's obituary from the newspaper. This is a temporary guestbook that runs for about a month following the person's death, and this guestbook will be ending very soon. Benjamin's caringbridge page and guestbook are not connected or related in any way to the guestbook from the obituary. I spoke with someone from the company that runs the guestbook from the obituary and read him the copy of the e-mail that went out to some people, and he wasn't able to tell me for sure whether some type of scam is being run using their company's name and Benjamin's name. He said that their company does send out e-mails to people who signed the "obituary guestbook" to let them know that the site will be concluding, but he wasn't sure about the accuracy of the e-mail that some of our friends have received. He said that their company has had this type of thing happen several times before when someone sets up a scam using their name and the name of someone recently deceased, so he warned us to be careful. Since we don't know for sure we'd still like to warn anyone who receives any type of e-mail regarding Benjamin's guestbook not to respond or reply in any way. We also heard that by "cutting and pasting" the info from the weird e-mail (as was suggested in the e-mail that people received) it could leave people's computers open to being hacked into. We don't want anyone to have any troubles with their computer from this, so it seems best to totally disregard any notes of this type if you receive one. Benjamin's Caringbridge guestbook is something totally separate and does not seem to be where the problem is. I had sent a note off to Caringbridge anyway just to let them know, and I received a note back that assures that there is not any type of "subscription" to caringbridge, and the caringbridge sites are available for as long as the families wish to keep them going. We're still disappointed to think that someone might be playing games with our family and especially with Benjamin's name and memory, but we're happy that his web page should not be affected. Thank you so much to all of you who sent notes and e-mails, and we hope that no one else has any strange e-mails about Benjamin's guestbook sent their way.

Thank you also to everyone who has sent notes and e-mails wishing me a peaceful Mother's Day tomorrow. I really appreciate all of the warm wishes. It will be bittersweet day, but just yet another "first." I've been looking back through all of the pictures and saved presents and "treasures" from past Mother's Days, and while these things certainly brings pangs of sadness, there are many, many happy memories connected as well. My favorites have to be the jewelry pieces from the gumball machine at Kroger's and the handmade jewelry that Benjamin made in pre-school. I have a great big Mother's Day pin decorated in bright sequins and magic marker and also a yarn necklace with a brightly painted ceramic decoration. I can still see the very proud look on Benjamin's face when he gave them to me a few years ago. Those are the kinds of gifts that are priceless!! Even though we won't have him with us to celebrate the day, he will still be a huge part of the celebrating in my heart.

Our family is doing alright as time keeps moving forward. We miss Benjamin tremendously, but we're doing ok. We look everywhere for signs from Benjamin to let us know that he's alright, and we think that Benjamin and Zachary gave us a huge gift for our peace of mind. The other night while Zachary was sleeping he kept talking in his sleep saying "Benny" and "the clouds" repeatedly. The next day we asked Zachary if he had been dreaming about Benjamin that night because of the things he had said. Zachary got the biggest smile on his face, started giggling (and he still reacts the same way every time you ask him about the dream), and said yes. When we asked him about the dream he said that Benny talked to him and told him that he loves him, then Benny was "goofing around" in the clouds (we're still not sure what that means, but it sounds appropriate from Benjamin), and then Benny had to go back to Heaven. Every time you ask Zachary about this dream he tells it exactly the same way, and he always has this big grin on his face like he is in some great secret with his brother. Now Brian and I have been looking for any kind of signs or dreams for ourselves which we would probably read all kinds of things into, but for this to come from Zachary there really isn't much to read into ~ it is pretty straightforward. Up until now Zachary never talked about any dreams that he had. Benjamin might say "I had a dream last night" and then proceed to tell us about the dream. Then Zachary would say "I had a dream, too," but when we'd ask him about dreams in the past he'd always get a blank look on his face, sit silently for a minute, and then say "uh, uh, I love you?" like he didn't know what else to say. This was the first time he told us about a dream in any detail. The other thing that struck us both was that in trying to explain Heaven to Zachary neither one of us has ever said anything about where Heaven is, like saying it is above the clouds, or anything like that. We don't know where that came from. Maybe we are reading too much into it, but it still gave us some smiles and some comfort.
The other cute thing is that now Zachary sings this little song all the time that he made up called "Benny in the Clouds" ~ it is very sweet!

Other than that, not much is new here. Thank you for continuing to check in on our family and for keeping us in your prayers. We hope no one else receives any weird e-mails regarding Benjamin's guestbook, and we'll let everyone know if we are able to find out any more.

Love, The Jones'

Friday, May 6, 2005 3:16 PM CDT

Dear friends,

I hadn't planned on updating Benjamin's web page again so soon, but felt that I better just to send out a warning to all of you. A couple of people who have followed Benjamin's web page for some time, and who have posted messages in his guestbook, let me know that they have received e-mails under the heading of Benjamin Michael Jones, and they are being asked to respond before May 8th otherwise access to his web page will be cancelled - like it is some kind of subscription or something. I don't know who is doing this or what exactly is going on, but now that we have been alerted about this we are investigating what this is all about. I just wanted to let all of you know that if you receive this type of message that this is NOT something that we are sending out, we don't know yet who is behind this, and please do not respond if this is someone trying to solicit money or something of that sort. It absolutely sickens us to know that someone might be playing some of kind of games using Benjamin's name, or worse yet, trying to profit in some way from him, but I can assure you that this is NOTHING that we are any part of. Please do not send anyone any money or anything like that - we will look into what is going on, and I will post more as soon as we find out more. I would hate to have to discontinue Benjamin's web page after everyone has been so tremendously kind and supportive of our family, and people have followed his story for so long, but I can't bear to have anyone do anything that would hurt Benjamin's memory either. I have seen and heard before of people playing sick practical jokes on families from CaringBridge who have lost their children, and I had thought that we have been so lucky never to have had that happen, but sadly we might be wrong. We don't want any of Benjamin's loyal friends to be preyed upon, and we don't Benjamin's death to bring profit to anyone. I'm so sorry that I even have to post this kind of an update, but we just wanted to warn all of you who have been so good to us so that you won't be taken in by someone who is playing games. We have never been told about the CaringBridge pages being any type of "subscription" that will run out at some point, especially if people don't respond to requests for a reply. I've followed many children's pages over a period of the last few years and have never received any type of message like that, so something sounds very wrong. Please just know that we are NOT behind anything like that, and please don't reply to anyone trying to solicit money using Benjamin's name. Thank you so much for always being behind our family and for keeping us in your prayers.

Love, The Jones'

Tuesday, April 26, 2005 4:53 PM CDT

Dear friends,

Thank you so much for continuing to stop by Benjamin's page and for leaving such kind messages for us. We're hanging in there, but missing our Benjamin so very much. It is very hard to believe that it has almost been three weeks since he died. In some ways the time has stood still, but at the same time it seems to have flown by - I don't know how to explain it. It seems impossible that we've lived for nearly three weeks without him. Some of the numbness and shock have worn away, and now we're just dealing with the reality that is our new lives. "Normal" life is very abnormal to us - just picking up and going out for errands, etc...is still very strange. When we do go out it is very hard to see an empty seat in the back of the car, and when we're at home it feels very quiet and a precious little voice is missing. We're slowly but surely trying to find a new "normal." Brian started back to work this week, and Zachary and I will be starting to get adjusted to just the two of us being here during the day. Everyone has been so wonderful and supportive and very understanding as we're trying to get back out there.

Zachary celebrated his third birthday, and he is getting more independent every day. He seems to be accepting that his brother isn't coming back, but he still misses Benjamin very much and struggles to understand how different things are now. He talks about his brother every day, and he tells us how much he misses Benjamin. During the times when he is more stressed out he seems to stutter quite a bit, but when things settle down again he doesn't have as hard a time. We're still going to have him work with one of the child psychologists from Children's doing play therapy to help him sort through all of these things, and we're just really happy that he does talk about his brother and doesn't seem to be afraid to ask questions. He's been getting lots of extra attention from all of us and from all of his family and friends, and that has really helped him. He likes to play with toys that were special to Benjamin, too, and maybe that will help him still feel connected to him. He is still very nervous about having any of us leave. When we have to go somewhere he always asks if we will come back, and he says that he's afraid people won't come back because Benny didn't come back. Hopefully as Brian is getting back into a work routine this will let Zachary start trusting that people really do come home.

Everything is so far, so good with Jeremy, too. I had my latest appointment for him last week, and we're hoping that he stays put for at least another five weeks or so. He is due on the 4th of July, but my doctor said that we should aim for early June because of previous pre-term labor problems. Some days I have more contractions than I should, but the doctor said that as long things settle back down after laying down on my left side for half an hour and drinking a glass of water (that's the remedy they say) then we don't have to come in.

Brian and I are doing alright, but of course we have our moments. Getting ready for the big things - like knowing we are going out and will see someone we haven't seen since he died, or knowing ahead of time that we are going to sort through some of Benjamin's things - these things don't feel as difficult to deal with as the random things that pop up when we're not braced to deal with them. The other day I found a little sock of Benjamin's under the couch when I was vacuuming. The sock had a juice stain on it, and I remembered the day (not so very long before) when he had stepped in some spilled juice and I told him to take the sock off before he tracked it in on the carpet. Being Benjamin, he just pulled the sock off and threw it. I didn't find it until we were moving things around to straighten up after Brian painted the living room. I picked up the sock and remembered that day just a few weeks before, and that one little thing made me cry off and on every time I thought of it for the rest of the day. The big events are hard, but the every day little things (like opening the freezer and finding the box of Benjamin's favorite waffles) really stop us in our tracks. We're also getting very close to the time of year when Benjamin had that scan (when we learned that he'd relapsed) that stopped our world - May 5th 2004. We look at pictures from one year ago when we had just moved into the house that was to be our new beginning, celebrated Zachary's birthday, etc...not knowing that everything was about to change. It is unbelievable how different things can be in just one year's time. We talk about Benjamin alot, look at lots of pictures, and remember things about him that we loved - that helps us to cope. Our families have taken such good care of us, too, I don't know how we could get through this without all of them. We've also received so many beautiful cards and notes that tell stories and memories of Benjamin, and we've just loved that!! As I said in our last update, please don't be afraid to talk about Benjamin with us. We love to remember him and know that other's remember him as well.

That's really about all that's new here. Thank you so much for thinking of us and for sending love and prayers our way. We know that we're not alone, and that has always been a tremendous comfort to us.

Love, The Jones'

Thursday, April 14, 2005 4:21 PM CDT

Dear friends,

We'd like to thank all of you for the overwhelming outpouring of love and support that our whole family has received, both over the last year since we found out that Benjamin's condition was terminal, and especially in the last week since we had to say good-bye to our beautiful boy. We have so appreciated all of the kind words and warm thoughts in phone calls, letters, guestbook messages, flowers and visits with people at our home and at Benjamin's calling hours, funeral, and chapel services before buriel. We have always been able to feel the support from family and friends, near and far, and that has brought us a tremendous amount of comfort. Benjamin has always meant the world to us and to his family, and to learn of how much he has come to mean to all of you brings us so much joy even during all of this sadness.

Benjamin's calling hours were on Sunday afternoon and evening, and his funeral and burial were on Monday, and seeing so many of our family and friends, who came from all over, meant so much to us. It really touched us to see people who traveled from here in Pickerington and the surrounding areas, people from Ashtabula (our home town), and people who drove or flew many hours just to be with us and to support us. We truly enjoyed visiting with you and especially sharing stories and memories of our Benjamin. His funeral Mass at St. Thomas Church was so uplifting, and Fr. Dennis truly captured all of the little details about Benjamin that made him such a special little boy. After Benjamin's funeral we traveled to Ashtabula, where Brian and I are originally from and where our families still live, for calling hours and a burial service there. This was also a lovely service led by Fr. Miller, and we were amazed by all of the family and friends who came out to be with us, say good-bye to Benjamin, and stand in support of our family. We just can't thank everyone enough - you'll never know how special that was for Brian and me and for all of our family. Not for one second have we felt alone in our sadness and grief.

After all was said and done, Tuesday and Wednesday were days spent back in Ashtabula visiting with family and coming to terms with our loss. We are doing alright, but there are undeniable feelings of emptiness and sadness that fill our lives now. It seems so hard to believe that a week ago today we lost Benjamin. Brian and I have said so many times that we couldn't have wished for Benjamin to continue on the way he was these last few weeks, but we desperately miss being able to see him, hold him, talk with him, and share our lives with him. For both of us the hardest part is that sometimes it feels like a dream that we ever even had him. The best way I can describe it is to say that it is like waking up from the best, most beautiful dream that you've ever had and wishing so hard that you could fall asleep and dream that dream again - like it has just become something hazy and far-off. Benjamin was so real and alive, and it is like he just slipped through our fingers away from us. We are able to talk about Benjamin and remember all of our favorite memories that make us smile and laugh, and that is something that we do very often throughout every day. I wasn't sure that we would be able to do that yet without it being too painful, but instead it has been so comforting to think of all of the many, many happy times we had with him over the last eight and a half years. He was always smiling, joking and cheerful, and it feels good to remember that. We'd also like to let you all know not to be afraid to come up to us if you see us out (or if we talk on the phone or send notes) and to share with us things you remember about Benjamin - things that make you laugh, funny things he said and did, anything like that. Please don't feel that you will upset us or make us cry. We might tear up, but it isn't because of you - it will make us happy to know that people still think of him and smile because of him, and it will be so comforting to know that no one has forgotten him. Thinking that people forgot about him would hurt worse. We talk about him all the time because he was a huge part of our lives, and we want to keep his memory alive and real for Zachary (and later on for Jeremy). We don't want anyone to feel on the spot to say something about Benjamin, rather we just want people to know not to be afraid to share stories about him. So many people did that at his calling hours, and we found ourselves smiling and laughing at things we too remembered, and also finding out things we didn't know about Benjamin - experiences he had shared with nurses, teachers, friends, and family when we weren't around also. It makes Benjamin still feel closeby and real when we share these things.

I will try to update again soon, but we just wanted to write to thank you all so much and to tell you that we're OK. We're a little bit quieter, so very much sadder, but we're alright because we know that Benjamin is free from cancer, and he is being loved and protected by his family in Heaven until we're with him again.

Love, The Jones'

Thursday, April 7, 2005 7:03 PM CDT

Dear Friends,

It is with broken hearts that Brian and I have to share with you the news that our precious son, Benjamin Michael Jones, died this morning at 8:20am. Overnight he slipped into a coma as we held him in his bed, and early this morning he slipped away very peacefully. I wish that I knew what to say right now, but words fail...all we can say is that he died peacefully and painlessly which had been our constant prayer once we knew that there would be no cure for him. His struggle is over. Thank you all so much for caring about him and taking him into your hearts. Our whole family has been so overwhelmed by the love, prayers and support that you've sent to us, and especially to Benjamin. He was the sweetest and gentlest little boy, and we miss him so terribly. It was our greatest honor to be his parents - he was such a gift to us.

Benjamin's obituary will run in tomorrow's Columbus Dispatch and also in the Ashtabula Star Beacon (our home town newspaper). Here are the details and funeral information for anyone who lives locally and would like to attend.

Visitation on Sunday at Dwayne R. Spence Funeral Home in Pickerington from 2:00-4:00pm and from 6:00-8:00pm.

Funeral Service on Monday at St. Thomas the Apostle Church in Columbus at 10:00am.

Visitation and Commital service at St. Joseph Cemetery in Ashtabula,OH from 4:00-5:00pm.

Again, we'd just like to thank all of you for keeping our spirits up during some very dark times and for being so kind to our sweet little Benjamin. We will love him forever!

Love, The Jones'

Wednesday, April 6, 2005 1:32 PM CDT

Hi everyone!

Benjamin is hanging in there, but he has continued to deteriorate more and more each day. There are still little bits of his personality that peek out from time to time, but for the most part there is so little of our little guy left. In the last few days he has experienced difficulty breathing overnight one night, but during the day he has done better. Last night he slept very peacefully and breathed easily. We now have an aerosol treatment we can use here at home for when he experiences what is called "air hunger," and hopefully that will keep him comfortable if he starts having the breathing problems again. We are now having daily visits from hospice so they can monitor Benjamin's condition and give us the advice and support we need to help Benjamin along the way. His heart rate has remained in the low 50's, but his respiration rate has dropped very significantly down to 6 - which means he only takes 6 breaths a minute. Last night his lungs were clear, but as of today he has quite a bit of fluid building up in his chest which is just another sign pointing to the fact that the end is very near. We are now down to just days. His ability to swallow is very compromised now as well, and he is starting to show signs of color changes in his finger nails so the oxygen just isn't getting through his body. His speech is very, very slurred so it is really hard to understand him, but we can usually make out some of what he is saying at times. Alot of the times the things he is talking about are images from his dreams, but he does still answer some of our questions with one word answers (yes/no answers). He is still so very loving and affectionate, and last night he just wanted to be hugged all night. We are taking turns sleeping with him at night so that we can be right there for him for anything he might need and so that he never feels alone, and he just wanted to be held all night. We'll never pass up a chance for a cuddle with him either. Everything and every moment is precious!! His body still has so much strength, but his muscles are very weak - if that makes any sense. He can push himself up or hold on to us, but if he tries to walk he has to have us support his body or else he will lose his balance and fall over. This morning he even played a bit with his Daddy - he was trying to tickle Brian's neck and "wrestle" as best he could. He tried to hold on to his Daddy's neck. Then Brian said that he had to get up for a minute, and I heard Benjamin mumble something. At first we couldn't tell what he had said, but after he repeated it for us we knew - he said "I'm tougher." For all that is happening to him he still had to do a little bit of trash-talking with Brian.

Benjamin was still able to wake up and have some alert times to see his Aunt Kim who has been here for a visit the last few days, and in a few days his Uncle Chris and Aunt Adria are coming too. We've had lots and lots of love and support from all of our family and friends, and we're doing the best we can with all of this. It is still impossible to believe that this is all happening, but to look at Benjamin now there is no denying how much has changed so quickly. His doctor said that a coma is not far off now, and that Benjamin will probably only live another day or so. We know that Benjamin has always been so strong and seems to follow his own time-table, but we also know that he is very, very weak now. We're just holding on and doing things day by day. Thank you for continuing to pray for him and for sending so much love our way. We are so appreciative of all of it!!!

Love, The Jones'

Sunday, April 3, 2005 12:35 AM CDT

Hi everyone!

Thank you all for your love, support and many, many prayers! We have been so touched by it all! We're all hanging in there, and Benjamin continues to amaze us all. He was checked on by Tina on Friday afternoon, and his heart rate has dropped some more. It used to always be in the 90's, and it was around 48 on Friday. He spends all of his time in his bed, but he still enjoys getting up once or twice a day for a little walk around the living room or for a walk out to the front door. He likes to look out at the street and wave to the neighbors. After several days of very little speaking and activity Benjamin has had a pretty perky weekend spent with all of his grandparents here. Over the past week we've enjoyed visits with my sister Katie and her boyfriend Greg, and my aunt and uncle came all the way from Mississippi for a visit at the end of this week while my grandma was also here. Since they are both retired my parents are able to stay here with us indefinitely, and they have been a wonderful source of emotional and physical support. This weekend my parents and Brian's parents are here, and Benjamin has been the most alert and chatty as he has been in days. Tina told us that this is probably his gift to all of us, and it really has been. We had already missed hearing all of his little jokes and sayings, so it has been nice to hear a little bit of that here and there again. He's pretty tired right now, though, and is back to sleep. Overall Benjamin feels well and never has a complaint, whenever you ask him how he's doing - it is always "I'm good." The only trouble that he has had, which is unbelievable considering the many things he has going on, is that he's had off and on troubles with his catheter and is on his third or fourth one right now. At least the irritation that can come from this can be easily treated with Tylenol. We just continue to pray that there won't be any headaches or any other type of pain. So far he has been very comfortable and he sleeps extremely peacefully. While he sleeps he dreams very vividly, and he talks out loud quite a bit. He's really given us quite a glimpse of what is going through his mind during the many hours he spends sleeping. He tells us that he's in his "playroom" (in his mind), and all of his dreams relate to his very favorite things and people - games, movies, TV shows, and family and friends. The time spent sleeping seems to take him to another place that he calls his "happy place," and it does bring us comfort to know that he is content.

That is all that is new here for now. I asked Tina on Friday if they still felt his remaining time was as little as the one to two weeks they had told us last weekend, and sadly that is still true. We're so grateful to have our family and friends with us and supporting us, and knowing that Benjamin is not hurting, is peaceful and has no fears helps us to deal with everything that is happening. It is still so hard, though. Thank you for keeping him in your prayers!!

Love, The Jones'

Wednesday, March 30, 2005 6:33 PM CST

Hi everyone!

I hope this update gets out there because I've been having some computer difficulties here - we'll try again!

I wish I had something good to share with you all about how Benjamin is doing, but he has just continued to deteriorate pretty rapidly over the last week. He had an extremely tough weekend - not sleeping at night and lots of restlessness and agitation. He is now on scheduled round the clock doses of valium, morphine and another back-up medicine in case he breaks through the other drugs. There is really very little left of the "old Benjamin" as we've always known him. Little sparks of his humor and personality still break through from time to time, but essentially he spends the majority of the day either sleeping, or he is in and out of sleep. He tries to play his video games still, but by the time I get the TV cart rolled over to his bedside he has usually fallen asleep again. His hospice nurses have been wonderful about coming out many, many times to make sure that he is comfortable and that he has everything he needs. His heart rate has been steadily going down each day, and while he is sleeping the periods of apnea (not breathing) seem to stretch out a little bit longer each night as well. Night time is the roughest for him. He is up and down, talking and rambling, and just unable to simply settle down and sleep. Last night was better, though, so the increases in his medications may be helping to fight against the restlessness which we're told is all part of the journey. As we understand it, the restlessness and agitation usually preceeds slipping into a coma, so while we try so hard to get him back to sleep each time he's up and down during the night for his own comfort, at the same time we're always left to wonder if he will ever wake up again. Slipping into a coma could come in as little time as hours or sometime over the coming days. The times he is awake with the little sparks of his old self coming through are times we cherish because we know that Benjamin has very little time left. After conversations with Benjamin's doctor on Sat., and everything about his condition had been reported, our nurse Tina told us that we will probably lose him in a week, possibly two. Even though we've been part of the hospice program for so long and have known what will be the outcome, the news was still so shocking, and we spent most of Sat. in a fog trying to come to grips with the thought of letting him go. I don't know how we'll ever do it, but it is very obvious that the time is rapidly approaching.

The only good news that I can tell you is that so far Benjamin has been in no pain or discomfort. Even the times that he is so restless and unsettled, and to us appears to be uncomfortable, he tells us that he feels just fine. Every time we ask how he is he always says "I'm good." He never makes a fuss or complains, no matter what is happening to him, he is just so strong. The other night we were up in the middle of the night trying to get him settled back down again, and he told us "I don't know how you do it." When we asked him what he meant he said that he didn't know how we did it, taking care of him, being up all night, and trying to find medicines to make him feel better. We told him that we've had the easier end of the deal, he is the one who has been so brave and strong - we're the ones who don't know how he's doing it. He is so sweet and so special and letting him go is breaking our hearts.

I'll try to update frequently, as things seem to keep changing pretty frequently in his condition. They may only be short updates, though, because I don't want to be away from him at all while he has times of being awake and alert. Please keep praying that Benjamin remains pain-free and comfortable. We have been surrounded by the love and support of family and friends, and with that support we're lifted back up again to start another day. Thank you so much for continuing to look in on Benjamin and for sending along your prayers and love to him.

Love, The Jones'

Friday, March 25, 2005 8:32 PM CST

Hi everyone!

I just wanted to try to get a quick update out there while things are quiet here. First of all, we'd like to thank everyone so much for the tremendous outpouring of love and support that has been sent our way through phone calls, e-mails, and guestbook messages. That means so much to us that so many people are thinking of and praying for Benjamin! It really does give us a big boost during some really tough days.

After having a few days when things were unraveling pretty quickly, Benjamin has had a couple of days where things have settled down somewhat. He still has all of the same issues, but thankfully nothing more has happened. He is not in any pain, at this time, and he's now on morphine around the clock, so hopefully that will hold off any pain should it start. The round the clock morphine was started to ease his breathing, and it has made such a difference. Before it was started Benjamin was either making a grunting or a moaning noise while breathing, and we weren't sure if he was having difficulty breathing or if he was in some kind of pain. He kept insisting that everything felt fine, but the cause of the grunting is that he is breathing in a "regular - irregular" pattern. He takes a breath, doesn't take a breath for 7 - 10 seconds, takes two breaths, holds it again, one breath, holds it, two breaths, etc...and the moaning was happening as he breathed out after holding it for several seconds. It was very comforting to find out from his nurses that for him this isn't causing any distress or pain (he really isn't even aware of it) - with the morphine he is breathing much easier. Tina was out to check on him this morning, and other than his heart rate being down slightly from his last check-up, things are basically the same. Tina and Deborah, Benjamin's nurses, have been just wonderful and have been out several times over the course of this past week. Tina was here this morning, and then she came back tonight on her way home to check on Benjamin's catheter because it had twisted and clogged up and was causing him a great deal of discomfort. We just can't say enough about the amazing care he is receiving (and has received all along) from everyone on his "team" from Children's. His nurse from the very beginning at diagnosis, Suzanne, calls every week to see how he's doing and has been out to visit many times as well. He has been so blessed along this whole nearly three year journey to have been cared for by the people at Children's and at OSU's James Cancer Hospital.

Yesterday we all had the wonderful treat of having a special dinner prepared for us in our home by Matt (Benjamin's nurse Deborah's husband) who is the head chef at Children's Hospital. They have just started a new program that has Matt come to your home to make a special dinner of that child's choice, and last night was Taco night at our house. The food was delicious and we enjoyed leftovers of it again tonight!!! Benjamin and Zachary (wearing chef hats) sat out in the kitchen with Matt as he cooked, and they discussed everything from who's who in WWE wrestling (Matt is also a big fan) to Superheroes. Matt prepared tacos, Spanish rice, refried beans, burgers (for Zachary), root beer floats, sundaes, and a very special treat Cinnamin Crispas - for all of you Taco Bell fans who remember those from before the Cinnamin Twists went on the menu. Matt totally impressed Benjamin by telling him that he had worked at Taco Bell back in high school - Benjamin LOVES Taco Bell! We all really enjoyed a fun night with Matt and Deborah, and we thank them for such a special treat!!

We're all hanging in there and taking things slowly. Zachary doesn't seem very fazed by all that is happening, but for his entire life he has seen hospital beds, nurses, medicine, tubies, etc...so maybe that is why. The first couple of days he just kept saying "Benny doesn't feel good," so we know that he knows that his brother isn't well, but he's handling things alright. He loves to help his brother by pressing the button to turn on/off the oxygen machine whenever Benjamin asks him to. Anytime Benjamin needs something Zachary pipes up with "can I help?" so it seems very important to him to be able to do something to help his brother. The more we let him help, the better it seems. Benjamin doesn't make a fuss or complain about his current health, and he just seems to concentrate on the few little things that he can still do on his own. He's been playing his video games a little bit again - we pulled the TV cart from the other room over to his bedside, and he has enjoyed that. He likes to listen to music on his headphones, and he has fun playing card games with us. He's been trying to get up each day to go for a little walk around the downstairs with his walker. He walks out to the front door to look out and see if we have spring weather yet - not yet, but next week looks promising!! His attitude, if it sounds possible, seems to be better and better as his little body fails him more and more. He is leading us, that is for sure. We can feel anger and sadness over seeing this happening to him, but how can we rant and rave on and on about it when he is handling it so gracefully. As he has said more than a few times this past week "what can you do?" He is at peace and not fighting against all of this, and actually when we try to handle it his way, by following his lead, it is the more comforting way. When I'm not right in front of him there absolutely are many, many tears and a sadness like I've never felt before, but trying to quietly and peacefully accept things like he has does makes a difference. Don't get us wrong, there is still a good share of anger and bitterness that things had to be this way, and it is a struggle to find acceptance, but after a while you just can't go on day after day so angry inside. I told someone today that he is just as sweet, if not even sweeter, than ever. He hugs and kisses us all constantly and tells us over and over that he loves us, and we do the same back for him - nothing is left unsaid. He's doing ok and we are too.

Thank you so much for praying for him and for thinking of us. We have so much love and support from our family and friends and from a new group of friends (who visit his webpage) that we never knew before this, and many of these people we have never actually met in person yet they still send so much encouragement our way. We're thankful for all of you!!!

Love, The Jones'

Wednesday, March 23, 2005 8:40 PM CST

Hi everyone!

This will probably only be a short update because I'm trying to hurry while Benjamin is sleeping. Things are not going well here, and we're so sad to tell you that Benjamin has started going downhill pretty rapidly since Sunday. We all had been sick with this cold/flu bug, but he had really been doing the best of all of us. On Sunday he slept quite a bit of the day and didn't really play at all, which is very unusual for him. We always can tell when he doesn't want to play his video games that something is not right. Since then Benjamin is unable to get around very well without someone right next to him assisting him. He is very winded just taking the short walk from one room to another, and he is now using his oxygen most of the time. He's having a harder time chewing and swallowing solid foods so we really have to watch that he doesn't choke. The right side of his body has poor circulation - his hand and foot on that side are cold while his other side stays warm, and he's still having the difficulty with the pain/itchiness around his right eye. We had to order a hospital bed for him here at home, and it arrived today and is set up in the living room. He's right in there so he can't feel left out of anything going on at all, and he can see us whether we're in the living room or the kitchen. He's very happy to have his new bed, and while it so hard to take some of these steps we have to admit that it was necessary and he is much more comfortable now. He needs to be propped up since he's accumulating so much fluid in his body and it makes it very uncomfortable for him to lay back flat on his back. He can adjust the hospital bed to any position that feels best for him. He's breathing more irregularly, as well, due to the increased pressure from the tumor in the back of his head (pressing on his brain stem) and from the increased fluid in his body. His speech has become quite slurred and it is often very difficult to understand what he's saying. At the beginning of the day he's much brighter and easier to understand, but as the day moves into the afternoon you can see him starting to slide downhill, become more tired and more slurred speech. Almost every function and part of daily life has now become a struggle or is compromised for him, and there is just no way to describe how awful it is to see him slipping away from us inch by inch. You can just imagine it by thinking of one of the people you love most in the entire world and literally seeing them lose more and more of themself each day. It is agonizing. He never complains or makes a fuss about anything that is happening to him - he just accepts and moves on. I truly don't know how he is doing it - he is just incredible. We don't know anymore right now in terms of how much time he has left, but we know that things are not looking good. One of his nurses explained to us that by next week he will probably be in a very different place (health-wise) than he is right now, and judging by how rapidly things have deteriorated in just a few days time that is understandable. He will probably get sleepier and sleepier until he slips into a coma as his body just gradually shuts down. At this point he's not in any pain, and that is one thing that we can be grateful for. We're also so appreciative of the wonderful care that he has been given this week from his hospice nurses Tina and Deborah - they have been out to the house, sometimes more than once in a day, and they have been so good to all of us!! We've also enjoyed the company of my aunt and uncle from MA and my Mom has been visiting this week. Brian's parents are coming this weekend, and the support from everyone has meant so much during some very dark days here. We apologize to anyone who has tried to call if we haven't gotten back to you yet, things have been so chaotic as we're trying to get settled into this ever changing routine. Benjamin is dependent on us for every need that he has, so taking care of both of the boys has kept us hopping. The extra emotional support and extra helping hands from family here now, and family that is coming soon, has helped us tremendously. Please say some extra prayers for Benjamin's comfort and peace - even with all of the things happening to him he's got the most upbeat and amazing attitude and he's the one who inspires us to get through each day - sometimes minute by minute. Thank you for checking back in on him and for keeping him in your prayers!!

Love, The Jones'

Wednesday, March 16, 2005 5:12 PM CST

Hi everyone!

Things are kind of yucky here right now - three out of four of us are sick, and we're coughing and hacking all over the place. Zachary started things off on Sunday, followed by me, and now unfortunately Benjamin is on board. We're going to have to watch him a little bit closer because of the breathing problems, but so far he is doing alright. He wears his oxygen mask all night and while taking naps, and his nurse said that during the day he can use it as needed since he sometimes just wants to take it off for a bit. He's good about going to get it and wearing it when he feels like he's running out of breath. So far he hasn't run a real temperature (just a slight one day) - just lots of coughing and sniffles, and he's very tired. Brian came home from work today to take care of all of us sick ones, and we spent the afternoon napping and watching cartoons and the new DVD The Incredibles. Because of how we're all sick right now we're going to have to postpone Benjamin's dinner with Matt, but hopefully next week we'll be back on track.

Benjamin is doing really well with adjusting to the changes in his diet - soft foods and the added Thick-It to all of his liquids. He doesn't really like having the Thick-It in there, but he doesn't complain and just rolls along with things. He asked me if we could go back to drinking like before, and we had to talk about why it just isn't safe. He was disappointed, but he's doing what he needs to do. Adjusting to the food changes really hasn't been difficult for him, thank goodness, so it is good that those are all of his favorites.

The hardest thing, so far, this week has been the conversation we had to have with Benjamin yesterday. For the first time since all of these changes started that Benjamin finally said that he doesn't like what is happening to himself, and he opened up to us about it all. He mostly is sad that he doesn't look (because of the swelling in his face from the steroids) like other kids and can't do the things other kids do. He knows everything that has been taken away from him - he used to play baseball on a team, he loved running around outside playing sports (and he was good at it, too), he could ride bikes, jump and play, he was steady on his feet and he had incredible energy like all boys do, etc... He said that he wanted to take chemo again, so we had to have a conversation like we had last summer about how there really aren't any other medications that we can try, how the tumors keep coming back, and how the tumors are what are causing all of these changes that he's experiencing. No one ever imagines having to have a talk like this about death with their child once, let alone having to do it again when the "last chance" chemo didn't work. Just before Christmas we thought that he had really put things together and understood what was happening, but since then he has only talked about things in his future and growing up. It was good that Brian was home from work and able to be here, too, for this, since he was home taking care of us yesterday too. We just held Benjamin, and talked with him, and tried to be as gentle as we could in explaining things. Benjamin listened to it all and told us "I'll just try to do the best I can and be brave." He is so sweet and kind, and it just rips out hearts out to hear the things he says sometimes. The unfairness of what is happening to him feels so overwhelming at times. Every day seems to bring something new, and it is never good. Today we found out that on top of everything else that has changed for him, now he's getting signals mixed up for when he needs to go to the potty. He thinks he has to go, he goes in there and stands for a few minutes, then we'll hear him say - "huh, I thought I had to go." I talked about this today with his nurse Deborah, and unfortunately it is just one more step along this road. It is so frustrating that this child just cannot catch a break anywhere ~ I don't know how he keeps from getting really angry about it all, but he is so accepting of the way things just are. I would be so bitter and angry in his spot, but he's so loving and sweet. He is always coming up to all of us to hug us and tell us that he loves us. That is one comfort through all of this horror over the last nearly three years ~ the diagnosis of cancer and learning that it is terminal has been the most frightening and saddest thing we've been through as a family, but it never tore us apart. He knows that we love him and his brother more than anything, and we know that he loves us so much, too. He has always been very affectionate, and that made things all the harder when his decadron made him feel so agitated - it was just so unlike his usual personality. Thank God that "happy medicine" has counter-acted the decadron, and Benjamin is back to his old self.

Well, anyway, that is about all that is new here since our bad day around here last Friday. Deborah checked on him yesterday, and aside from the start of this cold bug, Benjamin is breathing easier and adjusting to the latest changes. We're all just trying to hang in there. Thank you for all of the messages of prayers and support!! We look forward to reading them every day!

Love, The Jones'

Saturday, March 12, 2005 1:56 PM CST

Hi everyone!

In case anyone didn't see it, I did update Benjamin's page yesterday, but unfortunately we have to update again with more news. Last night we had to call hospice back out to the house because Benjamin was having problems breathing and also having problems with choking on food and liquids. The day started off pretty "normally," but I guess like I said in my last update - things sure can change quickly. Late in the afternoon while Benjamin was playing a game he suddenly said that his breathing didn't feel right, and he asked me to call his nurse. He's never asked us to make any calls to hospice before, we just do that on our own, so it seemed odd that he wanted the call made. Then he said that he sometimes feels like he's choking when he's eating and drinking. I had just given him a glass of juice, and he had seemed to drink it just fine. He said that he had been OK that time, but he feels like it sometimes. When I asked him how long he had felt like that he said "for a few days." This came as a surprise to us, but I had heard him say a couple times over the last few days that something had gone down the wrong pipe. He hadn't had a coughing fit or anything like that, but still I feel so badly that this is how he's felt but that I didn't realize it. He's always so hungry that I thought he was just wolfing down the food (or chugging his drinks) without taking the time to chew thoroughly or carefully. I called Deborah, and she and Brenda were so wonderful to come out and check on things. After checking on him and listening to his breathing for a bit, Deborah said that we needed to bring down the oxygen and get it hooked up for him. She started him out at the lowest level, and gave him a chance to breathe for awhile at that level before checking him again. There was no improvement so he was moved up another level, and as of when Deborah left that hadn't really brought any improvement in his breathing either. He breathes like you would if you just got done running around and you're trying to get back to breathing normally. That's how he describes the feeling of it, too. We couldn't really move the level up any higher yet, but Deborah said that if he became extremely uncomfortable overnight or was in distress we could go up as high as another two levels if need be. Benjamin slept well last night, but in the morning he told us that he feels no different as far as his breathing goes. Hopefully as he's on the oxygen throughout the day this will get better, but it is most likely that it will not. We're watching him for any signs of aspirate (sp?) pneumonia in case any food was aspirated into his lungs when he had a "wrong pipe" incident. Whenever the incidents happened he didn't have a coughing fit at all or anything like that - he just kind of cleared his throat a couple of times, but as a precaution we need to watch for signs of coughing or fever. If he did have the beginnings of that than that would explain the breathing difficulties. However, everyone says that it is more likely that this is further neurological breakdown, and if that is the case than the oxygen (even at higher levels) is not going to do much to improve his breathing, but it may make him more comfortable, and it may give him psychological comfort as well to have the oxygen going. His lungs were clear as of last night, but his breathing is shallow so it is hard to hear inside there very well. Deborah said that she will probably be back to check on him some time today so hopefully we will have some kind of good news, but she did tell us yesterday that this is probably progression.

As far as the choking on food and liquids go, the only way to tell for sure what is happening if for him to be admitted for a swallowing study. Everyone on his team discussed this yesterday, though, and they all agreed that they'd rather not put him through that and would just treat him as if they know that this is also now compromised. We have this mix called Thick-It to add to all of his drinks, and we now have a list of no-nos for the solid foods. For the most part the no-no list is not a problem for Benjamin because he mostly loves soft foods and breakfasty kinds of things - pancakes, waffles, oatmeal, mushy cereals, yogurts, puddings, etc... The only foods that will be harder for him to let go of will the hard taco shells and a nacho chips when we eat Mexican food. Sadly those are his true favorites, but we're hoping that he will be ok with maybe soft tacos instead. Chips and cracker kinds of things are not allowed at all because of the risk. Next week he is getting together with Matt, his nurse Deborah's husband, who is a hospice volunteer and is head chef at Children's for the start of a new hospice program where Matt will come to your home and make a special dinner for the child and his/her family. This sounds like a wonderful program, and Benjamin is very excited to have his turn. Matt said that he can either prepare the meal for the family, or if the child likes to cook he can help Matt in the kitchen ~ Benjamin loves to help mix and stir and do his own little thing, so he's really looking forward to this. Unfortunately Benjamin had picked tacos for his special dinner, but Deborah said that as long we don't see any big changes in the next week (please pray, pray, pray!!) maybe he could have it for a special treat, but we'll just really cut it down for him or encourage him to go with a soft taco instead. I really don't know how his swallowing will be by then ~ last night he had a Happy Meal cheeseburger (he was told by Deborah that it was allowed as long as he took very tiny bites and chewed very slowly and carefully), and he choked once on that; he choked once while taking his evening medications, and he's choked once or twice today already. Things just seem to be really picking up the pace ~ ughh! We now sit with him at each meal to really watch him and slow him down if need be - the thought of him choking and not clearing it is terrifying! As always, though, he doesn't seem to let any of this bother him. He just keeps adapting to the many, many things that have changed lately. To see him now he is just like a little, very old man in a small child's body ~ he's tired, he has little energy, his diet has changed, he's wearing an oxygen mask, he has a walker, he's on so many medicines, he's just wearing out ~ I can't even believe that not long ago I was telling him to slow down and stop running in the house, and now that is gone.

One good thing is that his new medicine - his "happy medicine" as he calls it - seems to be working in the right direction. He's much less irritable and he and his brother have been back to enjoying each other's company again. He's much more patient about how quiet things are, etc... but you can tell sometimes that he is right on the edge of getting worked up. He doesn't want his brother to touch his walker or to get too close to his cord for his oxygen. He did sit down with Zachary last night and show him how his little mask works and let him feel the air blowing through it. He's very proud of himself that he can put it on and take it off all on his own, and I think if nothing else it brings him some comfort that he's got some help with his breathing. Zachary has been asking if gets to have his own oxygen machine when he gets older, too, and we keep catching him trying to fit things over his face to use as his own "mask." As Benjamin's moods have settled we've seen Zachary making an effort to be more helpful to his brother rather than to provoke him. Zachary does amazingly well about being quiet and good when Benjamin needs his "quiet time," but sometimes you can tell that he's had enough, and he knows how to push Benjamin's buttons. Day before yesterday when Benjamin was trying to have "quiet time" in his tent I heard a lot of yelling and complaining from Benjamin. I came around to the front of the tent and caught Zachary standing on a tiny chair "mooning" his brother through the window of the tent (he did still have a diaper on, thank God, but he had taken off his "sweaty pants" as he calls his sweat pants. The day before that he was standing next to Benjamin during "quiet time" yelling "bing-bong, bing-bong, bing-bong" over and over again. I could see why that would drive Benjamin crazy because I'm not on steroids and that one got old pretty fast. Looking back later on Benjamin now thinks these little pranks from Zachary were funny, and we've all had a good laugh, but at the time you should have heard the howling and whining around here - our neighbors probably could - haha!

Well that is about all that I can share with you for right now until Benjamin is checked again by one of his nurses. Please keep him in your prayers that he will be comfortable and relaxed as much as possible. We're supposed to try to keep him calm because getting worked up will just make his breathing problems worse. Hopefully this "happy medicine" will continue to work so well ~ it couldn't have started at a better time. Thank you for all of the wonderful guestbook messages, too! We've just been so touched and overwhelmed by how Benjamin has been taken into so many peoples' hearts!! It has been so encouraging for us, as well, to know how much love and support is there for our family. Thank you so much!!!

Love, The Jones'

Friday, March 4, 2005 10:12 AM CST

Hi everyone!

Sorry for the confusing last entry - I had updated Benjamin's page, but then I was kicked offline, and for some reason it automatically went back to an old entry. Now we're up to date here.

Benjamin had his weekly visit with his nurse, Tina, and overall he's doing relatively well. He still has all of the same previous symptoms, but none have gotten any worse at least. Benjamin even went a couple of days with no headaches, but yesterday he started having aches and pains here and there again. Tylenol took care of them all, though. Tina just thought that he looked a little more tired than the week before when she checked on him, and he has a few issues with excess saliva, but still no need at all for the suctioning machine. She just recommended that we watch him closely for troubles swallowing because that could follow. As of right now, though, that has been no problem. He's using his walker, but is by no means dependent on it - I think he just feels better to have it nearby. He's still having the episodes of agitation, but the last day or so there were fewer times. We're also trying to get him to say that he just needs "quiet time," rather than yelling at Zachary to be quiet and for him to just go away so that Zachary's feelings won't be hurt. Benjamin is doing better with that, and he's also telling us when he can feel the episodes coming on. He says that he's starting to feel angry, so then we try to get him to his own spot - the tent is set back up again, so he just goes inside and zips it shut - he wants Zachary to be absolutely quiet and not run around or touch his things (which Zachary does as well as any two and half year can do really). If Zachary isn't quiet then Benjamin tells us that he can feel it starting to build up. Sometimes he starts yelling and getting really irate, but if we get Zachary diverted with books or puzzles that usually helps to settle things down.

I almost think we're having more issues with Zachary lately than with Benjamin because he's starting to react more to being told to go away. He gets frustrated, which is understandable, and later on when the episode is over he's not always willing to come back around and play with Benjamin. He's had too many times when he comes over asking to play or looking for a hug and is told by Benjamin to just leave him alone. I know that Benjamin doesn't mean it, and Benjamin tells Zachary that it is just his medicine, but he still gets his little feelings hurt sometimes. They still play together a lot, but you can tell that sometimes he's not too sure what can of response he's going to get from Benjamin. Zachary also gets irritated when Benjamin takes our attention away from himself. We were reading a Lilo and Stitch story the other night while Benjamin was watching Tarzan, and Benjamin kept stopping us to tell us about Hawaii and other things related to where Lilo and Stitch takes place. Benjamin repeats himself over and over sometimes, and Zachary got more and more frustrated until he said "you already said that, Mommy is reading to me now!!!" I know that he didn't mean to sound hurtful - he just is too little to understand this. Thank goodness that my parents are here for a visit and are giving the kids the extra TLC that only grandparents can - Zachary was ready for some extra babying.

I'm sorry to say that Benjamin did not get to go to WWE last weekend. We knew that it was really going to be up in the air right up until time to leave for the show because of how unpredictable things are here. All afternoon Benjamin told us that he wasn't sure if he could go because he just felt so tired. We held out until the last minute in case he changed his mind and felt up to going, but he told us that he just couldn't do it. He really handled it well, and I think that inside Brian and I were more disappointed because we know that WWE only comes to town once or twice a year, but there was no choice in the matter. Benjamin really wasn't kidding about how tired he was either because he crawled up on the couch and fell asleep for about six hours. Brian came up with a good plan B for Benjamin, though. Benjamin had been asking for a punching bag and boxing gloves for some time, so Brian went out to Sport Mart and picked them up for him. Since Benjamin was so sleepy he didn't get to try them out until Monday, but when he did he loved it!! Someone has to stand right next to him while he's boxing to help keep him steady, but he's happy as can be with his new toy!

I had my latest baby appointment this week, and my doctor said that everything sounds and looks good so far. We're more than half-way there now, and can't wait to meet Jeremy, or "big fat Jeremy" as Zachary calls him. He doesn't say it in a mean way at all. I think he's just decided that since I need to eat many little meals throughout the day rather than three big meals that this baby must be gigantic with all of that food going in. Zachary follows me out to the kitchen and asks "when you're done feeding big, fat Jeremy will you feed me?" He says it so matter of factly which makes it even funnier. A lot of people have asked when Jeremy is due, and I guess I never did write that when we announced it. He is due on the 4th of July, but both of our boys were early (pre-term labor) so my doctor told me just to shoot for early June. If I actually went all the way to July that would probably feel like I was overdue - haha! We're just hoping and praying for everything to go smoothly and for Jeremy to stay put until the time is right and it is safe for him to put in his appearance. My doctor knows everything that is going on here, and she's keeping a close watch on everything for us, which is very reassuring.

That is about all of the news from here. Thank you for your continued prayers, love and support!! You can never know how much it means to all of us!!

Love, The Jones'

Friday, March 4, 2005 10:12 AM CST

Thursday, February 24, 2005 10:36 AM CST

Hi everyone!

I decided to update a little bit earlier this week since Benjamin had his hospice check-up yesterday rather than his usual Friday appointment. Paul came out to check on him and overall things are relatively good. The steroids are, for now, keeping Benjamin in a kind of holding pattern. He's still getting headaches (usually one to three headaches every day), but they haven't been so bad that Tylenol couldn't take care of them. His balance is still quite off, but it hasn't gotten any worse. He's still having the spots on his head that alternate between giving him pain or feeling like they are numb. His hearing comes and goes, and his right eye is still droopier in appearance than the left eye. He gave us a little scare on Monday because he basically slept the day away, and we know that that is never a good sign. It seems that he just needed a day to catch up on his rest, though. While he is still extremely exhausted, he hasn't slept like that the rest of this week. I've finally been able to get him to either take one nap or at least lay down and rest every day. He does perk up a bit after that, but fatigue is really the biggest thing that we see as a constant from day to day. Benjamin's short term memory is starting to be affected more because he repeats himself many times throughout the day without realizing it. We don't draw any attention to it though. His long term memory and everything else is still sharp as a tack. He's still doing well with his reading and math when he works with Nancy each time. He comes up with the funniest comments all the time, too. He just forgets the things he has just told us sometimes. The "grumpies" from the steroids have have pretty much disappeared, too. Just when he's ready to lay down he wants everything in the house to shut down and be dark and quiet. Zachary has done an amazing job for an almost three year old (a motor-mouth almost three year old at that) at being quiet for his brother. As soon as Benjamin lays down Zachary doesn't speak above a whisper until Benjamin gets back up again. If I say something too loud I get the high sign from Zachary that I'm too loud, and I see his little index finger in front of his lips to signal me to be quiet- haha! Zachary is doing alright for now, but he definitely senses that things just aren't quite right around here. He's very protective of Benjamin and asks all the time about if "Benny needs medicine?" or if he needs a finger poke (for blood tests), or if he has to go to the "hop-a-doo" as he calls the hospital. Yesterday the oxygen and a little walker were dropped off by the medical supply company, and Zachary had a million questions for why we had that here. For now Benjamin doesn't need the oxygen so Brian put it away upstairs because neither he or I can stand to look at it sitting there. We left the walker out downstairs, and Benjamin hasn't used it yet, but it is here for him if he's feeling especially unsteady. It's going to break my heart all over again when he starts needing it on a regular basis - it hurts so much to watch his body failing him. Paul showed Benjamin how the walker works, and Benjamin isn't bothered by the arrival of either the walker or the oxygen. He told Paul, which was news to me yesterday, that when he's tired during the day and when he's ready to fall asleep (for naps and at night) he feels like he has to take many quick breaths - almost like he's panting - because that helps him to breathe. Paul said that Benjamin's heart rate is back up in the normal range (since the steroids), but his pulse is irregular. He said that is probably why Benjamin feels like he has to breathe that way when he's tired. I asked Benjamin if he feels uncomfortable when he breathes that way or if it just feels better that way, and he said that he's not uncomfortable at all - thank God for that.

I guess that pretty much sums up Benjamin's week. He's had lots of visitors which he has enjoyed! He's also really enjoying all of the new messages in his guestbook. Thank you so much visiting and leaving him a note to brighten up his day. You have really made him feel very special! Overall he is doing relatively well, and we're thankful for that. We're doing alright. Your notes have been very uplifting for us as well because, very honestly, this is not easy at all. People tell us that we must be very strong to be dealing with it all, but most of the time it feels like we're just holding on by a thread. The tears come much quicker and easier these days (not in front of Benjamin), all it takes is for him to say something about what he wants to be when he grows up - he told me yesterday "I have so many dreams and plans...", or each time a new symptom pops up it brings it all up again. We're getting snow here today and it is quite cold, and Benjamin has taken a lot of pride in telling me that he doesn't feel cold at all - rather he feels really hot. He thinks that it is good thing because he must be tougher than us who are freezing and putting on sweaters, but one of his nurses told us that another sign of progression is for his body temperature to be all out of whack. I hope that this isn't the case, but I have to admit that it made my heart sink further when he announced that this morning. We're trying to be as upbeat and as hopeful as much as we can, but it is very often hard. The notes and e-mails really do help!! We're very lucky to have the support and love behind us that we do!!

We hope it is a good weekend for you and for Benjamin!!

Love, The Jones'

Thursday, February 24, 2005 10:36 AM CST

Saturday, February 12, 2005 9:03 AM CST

Hi everyone!

***UPDATE - We're so happy to be able to share a good update with all of you today. Benjamin had a check-up from one of his hospice nurses yesterday. The steroids seem to be working - no more nausea and vomiting, no more headaches, and most importantly, Benjamin's heart rate has come back up to normal!! He's still extremely tired, and while we understand that the steroids will only work temporarily, we feel almost like we've been given a little reprieve from all of this for a bit. The exhaustion that Benjamin feels seems to be the biggest issue right now, and he absolutely refuses to give in and take any rests throughout the day. He will be sitting there with his eyes barely open and his little head bobbing forward, but we can't get him to just give his body a break. Benjamin really has an iron will! Thank you for all of the prayers and wonderful guestbook messages - we've been reading them every morning and they truly make our day!! I'll update again this weekend, and we hope the rest of this week is a good one for you all, as well as for Benjamin!!***

We'd like to thank all of you for the many, many prayers and wishes of encouragement that have been sent along for Benjamin and for our family this week (Benjamin had some rough days at the end of the week - see last update). All of your thoughts and prayers have really picked us back up during what has turned out to be an emotionally draining week. I don't have as glowing an update as I did last week, but there is also some good news in there. On the bright side, the steroids (Decadron) that were started this week seem to helping to control his symptoms for the time being. He's had no trouble with headaches, increased nausea, or holding his head up for the past few days thankfully. He's feeling very well - extremely exhausted - but otherwise fine.

Yesterday was his check-up with his hospice nurse, Tina, and unfortunately she said that there have been some pretty big changes in the two weeks since she saw him last. The balance is very off, his appetite continues to be poor (but he's eating a little and he's drinking very well), and his hearing is going - those were all things we were aware of, nothing new there. The biggest change that she detected was that his heart rate has dropped which is not a good sign. His heart rate normally runs up in the 80's and now it is around 62. When I asked Tina how low it can drop with him still able to feel alright she said that she has seen kids have their heart rates all the way down in the 40's and still be playing around. She said that all of this means that either the tumor that came back in the original location has either grown down into the brain stem (responsible for all vital functions), or the tumor has grown and is putting pressure on his brain stem - neither one is a good thing. We now have to start watching for signs of respiratory difficulties. Tina said that he will probably start to breath differently, but it won't be disturbing to him. Because his heart rate has slowed down his breathing will start to follow, and he will have periods of apnea (either while sleeping or awake) and several seconds can go in between each breath. He probably won't feel like he's gasping for air, though, he will just be slowing down all the way around. They are having oxygen sent to the house next week, just to have in case he starts feeling respiratory distress so we can make him more comfortable until someone from hospice can come to the house. Tina also said that we may see him start to become more and more sleepy as his heart rates slows more. This is all so much to take in, but at the same time since we are starting down the path of no return, if it has to be this way, Brian and I have prayed all along that when the time comes that Benjamin will just get more and more sleepy and drift away. We haven't had any choices along the way (in terms of such an awful thing happening to our guy), and we still don't have any choices for how the end will be, but if it has to be, this is the better way than for him to suffer in pain. Also the tumors have grown to such a point where they are causing cranial nerve involvement. The signs of this are that he can't hold his right eye completely open (it appears much of the time like he's starting to wink at us), and now it is beginning to affect his left eye to a lesser degree. His nurses have to hold his right eye open to do their assessments of him (like shining the light in his eye and to have him track the light). Another sign of this involvement is that when she asked him to make faces at her, like to smile or to stick his tongue out, he had great difficulty doing this. His speech is also becoming slightly slurred, but she encouraged us to try to go along with whatever he's talking about as much of the time as possible without asking him to repeat himself so he doesn't become frustrated by it. Also this past week Benjamin started having some real problems tolerating sweet foods like cookies, etc...and that also relates to cranial nerves. Tina said that the decreased appetite may be a part of the cranial nerves or it could be that the tumors have grown into the appetite center in the brain. The last possibility is that his body is just slowly shutting down, and he just doesn't need or want the food and to force it would be detrimental to his body. Because of all of the problems with the cranial nerves we have to really watch him while he's eating to see if he's having problems swallowing - this will be the worst sign because at that point he will be unable to eat or drink anymore. Please pray that we haven't gotten close to that point. We already have a machine that helps to suction out the mouth, but that has never been out of the bag, and hopefully it can stay that way.

All of that latest information is alot to take in and accept, and it still doesn't seem possible that all of these things are really happening. There are so many times throughout the day now where we just have to look away and blink back the tears because it is just too much to deal with. Benjamin, as always, is handling everything the best of everyone. He doesn't like the changes that have been happening, but at the same time he doesn't seem to be extremely concerned or bothered by them. He still talks about his future all the time, and I just don't believe that he thinks that he can't survive all of this. People have asked us if we think that he's trying to protect us, but we honestly don't believe that is the case. Benjamin is not very good at hiding things from us, or at least not for very long. It always comes out - he either can't sleep well or he just bursts out with whatever is worrying him. That is one thing that is a blessing in the middle of all of this is that Benjamin doesn't seem to be afraid. When Tina was here I asked her if she was able to tell anything in terms of how much time he has left based on everything she's seeing, and it is still so hard to know right now. Things are clearly changing at a much more rapid rate than they did all summer and fall, but then again things could level off again for a bit. I asked her if she thought we would still have him by the time the new baby gets here, and that is very hard to say. Jeremy is due on the 4th of July, but since I've had pre-term labor with all of the kids my doctor said that we'll just shoot for the beginning of June instead. In terms of all of the symptoms that Benjamin is now experiencing that is quite a long time to hang in there, but she also said that she has seen kids hang on and try to so hard to live for longer than anyone would have expected. Benjamin has already proved that since back when he relapsed in May 2004 no one expected him to live longer than 2 to 4 months. Hopefully we'll be blessed with more time...

I wish I had better news to give you all. We're doing alright trying to process it all and let it all sink in. It is all pretty heavy right now, though. No one can ever imagine that their child will have to go through this, and that all you can do is sit by and watch and wait for worse things to come. The support of our family and friends is tremendous, though, and we appreciate all of you more than you can know. Just to let you know, Benjamin is still working on his beard (see last update), and he asked me yesterday if there was some kind of medicine he could take to help the process along, like Rogaine or something. I don't know where this kid comes up with this stuff - haha!! His sense of humor is just as bright as ever!! Thank you for keeping us all in your prayers!

Love, The Jones'

Saturday, February 12, 2005 9:03 AM CST

Saturday, February 5, 2005 6:32 PM CST

Hi everyone!

***UPDATE Thurs. morning - Thank you for all of the extra prayers for Benjamin and for our family!! Benjamin is doing much better this morning - we haven't seen the headaches, nausea, or difficulty in holding his head up this morning. He is still very tired and feels like he can't fully wake up, and he woke up having quite a bit of pain in his ankles and wrists, but all the pain is gone since taking Tylenol and pain medicine. Now he's back to playing his games and he's feeling well. Benjamin will not be having any scans done at this point. After many discussions with everyone on his medical team, the opinion from all involved is that these latest symptoms are due to natural progression from the tumors causing increased pressure in Benjamin's head. If the problem was related to his shunt malfunctioning then we would be seeing more severe and dramatic symptoms like we saw when he first needed to have the shunt placement surgery back in 2002 (very severe headaches and he was completely disoriented - when we had him at the hospital he thought he was at home playing his video games - all of these symptoms happened very suddenly as well). We feel comfortable at this point to continue watching his behavior and symptoms, and Benjamin is very relieved to not have to go back to the hospital. We had discussed everything with him last night and explained that we wanted to let him have as many choices as possible, but that if his doctors and nurses felt that this would be necessary and would make him feel better then we would want him to have the scans done. He agreed that he would go if he had to, but he was very happy to hear this morning that he didn't have to. The plan for now is to continue with the steroids and see what improvements come in the next fews days to a week. Hopefully the Decadron will help decrease the pressure, but we also know that this will only work for a while. At some point it will stop working as things continue to progress with the tumors. This news is so hard to hear and to accept, but we knew that eventually things would start heading in this direction. We can just be thankful that Benjamin is feeling well, and so far we've been able to keep his pain under control. On a funny note, Benjamin asked us if it would be alright if he grew a beard since he's not going to school. We told him that if he can manage it he has our blessings - haha! Thank you for keeping Benjamin in your prayers and please continue to pray that he stays happy, feeling well and pain-free!!!***

**UPDATE - Please say some extra prayers for Benjamin! He's doing alright, and it is not any kind of emergency situation. Sadly, he has been experiencing some more changes over the past few days - more frequent headaches, dizziness, more falls, more nausea, more exhaustion and as of this morning he was having difficulty holding his head up. He said that it felt like his neck didn't have muscles anymore. He also said that he feels like he can't fully wake up - it feels like he's "still dreaming and we're all in his dreams." He's perked up quite a bit this afternoon and is able to hold his head up just fine now, but one of his hospice nurses will be out soon to check on him and to start him on a steroid - Decadron. His doctor and nurses believe that the problems are related to increased pressure from the tumors in his brain, and the tumor in the back of his head is most probably causing the difficulty with holding his head up. They said that within the next few days we should know if the steroids are reducing the pressure for the time being (eventually the steroids will not be able to do anything for him, but they could be a big help for now). If things do not improve then he may have to go in to Children's to have his shunt scanned. If there is some type of problem with the shunt then he may have to be admitted for a day or two to have surgery (he does not know about the possibility of surgery - there is no need to worry him because it may not even be necessary) (it is a very routine procedure) to work on the shunt. Everything is very up in the air right now. Please pray for Benjamin to improve right away with the start of this new medication, and please pray for guidence for us in the decisions that we may have to make if this doesn't bring any improvement. On a very good note - Benjamin is much perkier this afternoon, and none of this has stopped him from playing his beloved video games - we always know when he's really feeling badly if he doesn't keep playing - and he's happily playing away right now. I'll update as we find out more over the next few days as the medication gets started. Thank you for the prayers and the support!!**

We hope you've had a good week - it is really nice to be able to report that it was a nice week for Benjamin. It was a pretty quiet week because I wasn't feeling well for the majority of the week, but Benjamin and Zachary play well together and keep each other pretty busy. They've been playing in their tent that Brian set up inside for them. Benjamin sits in there in his little comfy chair and plays video games. He has a new computer game that he's had a lot of fun with this week - Zoo Tycoon - and he gets to pick out animals and create his own zoo. We also picked up a new MarioKart racing game since we wore out our old one. Benjamin and I (and anyone who came to visit - haha!) played that game ALL summer, and we've been in withdrawal since it broke not too long ago. He is still very good at the game, but Mommy is very rusty - haha! Benjamin camped out in his tent last night - we moved it into the living room and put an air mattress under it so he would have a little bed, too. He loves to camp and can't wait for warmer weather, so we hope that he has a chance to camp again whenever it finally warms up.

Yesterday was Benjamin's check-up day and his nurse, Deborah, had a good report on him. While he still has a very tiny appetite, poor balance, and off and on hearing problems, we haven't seen any further changes. Things seem to take steps down, and Brian and I panic and wonder how quickly things are going. Then everything settles down and evens out again. Deborah told us that all of the changes are probably due to further disease progression (the hearing problems had been a question, but now it seems likely that they are related as well), but by all appearances things still seem to be progressing slowly. We are just extremely grateful that Benjamin is not experiencing pain (just here and there twinges of pain that are usually gone before I can even get his pain medication, or disappear with just Tylenol), and that he is still enjoying so much of his life. Benjamin continues to amaze both us and his doctor and nurses by how well he is still doing 9 months to the day that we were told that he had relapsed and we would not have much time left with him. We truly never thought we'd have him by the end of the summer or by his birthday in Sept., let alone that we would be starting the new year together. We know that bit by bit things are changing and we can't stop them from happening, but things feel so bizarrely (sp?) normal most of the time. His appetite concerns us the most right now - it seems to drop a little more each week. I asked his nurses how long a person can last eating that much - or more accurately, not eating that much. They told us that you would really be surprised, though, but that at some point his body will start breaking down his reserves. He doesn't really look like he's lost much weight. He just looks very pale to me. They also said that they've seen a lot of kids hang on for special events that are coming in their lives like Christmas, a graduation, or in this case - a new baby. We just hope and pray that that will happen here.

Today Benjamin had a special afternoon out with his buddy, Austin. Austin's mom, Kathy, was Benjamin's physical therapist up at Children's, and the boys hit it off right from the start. We've tried and tried to get together over the last few weeks, but unfortunately I've been so sick and we've had to keep post-poning. Brian and Benjamin met Austin and Kathy at the movie theater, and they saw Are We There Yet? The boys have talked on the phone a few times over the past couple weeks, but Benjamin was really looking forward to getting to see his friend. He had a ball this afternoon, and he highly recommends the movie.

More good news for Benjamin - this morning tickets for WWE went on sale, and Brian was able to get some really good seats - right down in front!! Benjamin is so excited!! WWE is coming to town at the end of the month so hopefully Benjamin will be feeling well and up for an afternoon out.

We'd like to send out a big thank you to Ellen for the hand-made slippers she sent out for the whole family. The boys really got a kick out of their matching slippers - there was even a tiny, little matching pair for Baby Jeremy! That was so sweet of her, and our feet are staying nice and toasty warm here in freezing cold OH!!

That's about all of the news here. Like I said, it is so nice to be able to tell you about a good week here for Benjamin. Thank you for keeping him, and all of his little buddies, in your prayers!!

Love, The Jones'

Saturday, January 29, 2005 11:11 AM CST

Hi everyone!

While unfortunately we've seen more changes in Benjamin this week, overall he still had a really good week. On Monday my parents came down to visit for a few days, and the boys loved the visit while I enjoyed both visiting and the TLC from Mom and Dad since I'm still feeling yucky from the morning sickness - Jeremy just doesn't want to let up - haha! Benjamin gets such a kick out of us saying that Jeremy will report directly to time-out after he's born since he's being so ornery. The boys enjoyed playing with them and eating the special treats (especially the muffins and bacon - Benjamin's favorites) that my Dad cooked up (he's a wonderful cook!).

Benjamin had a fun-filled week of more visitors, too. His good buddy, Mrs. Brinda, worked with him a couple days this week, and of course he had his big wrestling match with Paul (one of his hospice nurses). Paul came over on Thursday, and Benjamin was ready and waiting for him. He could hardly be still during his mini-physical because he was ready to get down to business. In the days before the match Benjamin got ready by lifting weights and plotting out his strategy of what moves he wanted to use. It was hilarious to hear him going over his ideas over and over again. All of that preparation must have been a good thing because he came out of the match the winner - a very proud and trash-talking winner(haha) at that - he and Paul really enjoy giving each other a hard time!

Paul hadn't seen Benjamin for about two weeks - since our fire station visit - and while he said that overall Benjamin looks good, he could also see more little changes, too. Benjamin had quite a few major wipe outs this past week, and Paul was here to see a little of that, too. Paul also did some little balance tests with Benjamin during his physical, and he was really wobbly and lost his balance so easily. Benjamin's eating has gotten even worse over the past couple days as well. In one day he typically eats a small bowl of cereal, half a bagel, and a little toast - all day long!! He's very good about drinking at least, and he promised Paul that he would try to eat something whenever he could so he could keep his strength up. Even the typical kid-friendly foods like hot-dogs, mac and cheese, pizza, spaghetti, chicken nuggets, etc... don't appeal at all to him. Most of it is that his appetite has just dropped off so much, but some of it is that things don't taste right to him. He's always loved chicken noodle soup, and we liked to give him that because he was getting some food and good liquids at one time, but even that is out of the picture now. We gave him a bowl of soup and he said that it just doesn't taste the same. Paul said that at least the foods he can eat are high in carbs, and that will help to boost his energy some. The other change that Benjamin noticed first is a change in his hearing, too. He said that sometimes he just can't hear as well as before. After radiation, and even up until he was still having regular clinic appointments during his remission, his doctor and Suzanne (his nurse practitioner) always saw that he had very hard, dried wax deep in his ear canal. This was a side effect from the radiationa and is very difficult to reach since it is back so deep. We had hoped that maybe that was the reason for the hearing problems, and while it still could be, Paul wasn't sure why the problem would come and go rather than be more constant if it is related to wax build-up. We do know that Benjamin has two spots of cancer that have spread to the skull bone itself, and one of the spots is near his ear and that whole hearing center. Watching these changes is agonizing - we hate to see the changes happening after being blessed with such a long period of time with relatively little change. It is even harder because Benjamin is aware of the changes, too, and it is so hard to look him in the eyes after he has a huge wipe out with no apparent cause - it's not like he's tripping over something - he is just up one minute and flat out on his face the next minute. He knows these things are happening because of his tumors - he has said so, but he doesn't seem to act like he thinks that he is going to die from this anymore. He talks about things way in the future still (like being a grown-up), and he doesn't talk about dying like he used to. I don't know if it because so much time has gone by and nothing happened, so maybe he doesn't believe it will anymore. Maybe it is better this way, though. It is horrible enough to watch things happen bit by bit - thinking of his mind being tortured hurts too much.

All of the changes haven't slowed him down any, though. Yesterday we had a couple of visitors, and then he had a big night out with one of his best friends, Rochelle. Some friends of their family had invited them to go to the Columbus Destroyers arena football game last night, and they ended up having two extra tickets. Rochelle invited Benjamin and his Daddy to come along. He had such a fun night out with his friend, and it was also his first arena football game. He was exhausted when he got home, but he had thoroughly enjoyed himself!!! He's tired today still, but he and his little brother are keeping busy. It really hit home last night how everything that is ahead of us is going to be really hard on Zachary, too. All night he kept asking if "his Benny" was going to come home, and he'd say, with tears welled up, how much he missed him. He is just old enough for all of this to really hurt him, too, but not old enough for anything we say to him to make any sense at all. It makes no sense to us either, so how can we hope to explain it to a two and half year old. Nothing is easy, that's for sure, but somehow we'll get there. We have so many really wonderful and caring people who have already been down this awful road make contact with us to give us advice and encourage us through all of this mess. We know that we aren't the first family to have to go through this, and sadly enough, we won't be the last family either. All of the love and support from our family and friends is getting us through.

Well, that is about all of the news from here. We hope you all have a great week, and thank you stopping back to visit our guy!

Love, The Jones'

Saturday, January 29, 2005 11:11 AM CST

Saturday, January 22, 2005 9:35 AM CST

Hi everyone!

We would like to ask all of you to keep a very special little boy in your prayers - Brant Hamilton. He recently relapsed from an ependymoma (another type of brain tumor)and had started a new chemo. Yesterday was his MRI to check on how well the chemo was working, and sadly his family received the news that parents never want to hear. Thankfully Brant is feeling very well and is symptom free, but I'm sure his family would appreciate all of our prayers during this very tough time. They have been extremely supportive of Benjamin and of our family, and our hearts are so heavy for them. His web address is BrantThomas (Thank you to Jeff Thomas for the tips on how to make an automatic link to web pages!!).

Benjamin has been feeling really well this week after a little bit of a rough start. We had decided to try again with his medicine Megace to spark his appetite, and his nurses from hospice had warned us that it would be fine to try it, but his body may just be trying to tell us that he doesn't want or need that much food. They said that overloading him with food might make him more nauseated, and unfortunately that was the case. The poor little guy had pizza on Sat. night, which was a big first - he used to love pizza, but he hasn't wanted that in a long time. He had a couple pieces of pizza and some pop, which doesn't sound like alot, but compared with how he has been eating over the past few weeks it was just too much. We were so happy and excited to see him eat that we forgot all about the warnings, and Benjamin paid the price. He got sick and his little belly wasn't the same for a couple of days. We immediately stopped that medicine. It just isn't worth it to make him eat more and have him throw all of it up instead of having him just eat less, but keep it all down. He's back to eating how he has been for the last few weeks -mostly bland, breakfast kind of foods - toast, bagels, yogurt, applesauce, cereal, and an occasional toasted cheese sandwich. He eats small amounts, but at least it has stayed with him.

Benjamin had a wonderful treat from his friend and hospice nurse, Paul. He just thinks the world of Paul and looks forward to his every visit. Paul wrestles and does all the things that every 8 year old guy thinks is cool. He is a full-time fire fighter, and he invited Benjamin and our family to come visit his fire station in New Albany. The boys were so excited and couldn't wait to get there. First Paul took us all around for a tour of the station, and then he and Benjamin had a little work-out in the weight room. Benjamin was just in awe of that weight room and I didn't think he would ever leave it. Then he took us out to the garage to check out all the vehicles and he let the boys get inside for pictures and everything. The biggest surprise came when Paul put Benjamin up in the front seat and told us all to climb in the back of the huge ladder truck. I thought we were just going to pose for pictures, but Paul started the truck up and pulled out and drove around the parking lot at the fire station. Benjamin was bouncing all over in the front seat - he was sooooo excited! We went around to the back parking lot and all got out of the truck, and then Paul and another friend of his at the station helped Benjamin, Zachary, and I into the bucket for a big ride up 60 feet in the air! The ladder goes up 80 feet, so we went up quite a ways - what a view!! The boys got such a kick out of it all, and Zachary was the quietest I've ever seen him (those of you who know him know that he NEVER stops talking!). When we got back on the ground Paul took Brenda (another friend from the hospice team) for a turn to go up 60 feet in the air. That was when it really hit Benjamin just how high up we went - he couldn't believe it. It was a really fun and special day, and we'll try to get some pictures posted pretty soon. The boys felt so at home with the guys from the fire station and didn't want to leave. Benjamin asked if he could spend the night there, and when we got home Zachary said "Paul's house is cool, can we go back there?" We all got a kick out of how he thought Paul lived there. We really appreciate what a special afternoon that Paul and Brenda put together for Benjamin - he's still talking about it!

Next week Benjamin has a big wrestling match against Paul scheduled, and his other nurse, Tina, is coming along too to be in the audience. Benjamin is putting his two wrestling belts up against Paul's two wrestling belts - winner take all! Benjamin is in serious training this week - he has been using my handweights and pumping iron in preparation - it is so funny how seriously he's taking it all. He and Paul have been trash-talking each other and reminding the other one to polish up the belts and to dream about the other one's belts since that is the only way they will see them. Benjamin has finally met his match in trash-talking!

Tina (his hospice nurse) came to check on Benjamin this week, and she said that he's doing really well. The only things that stand out are the low appetite and that he is more unsteady, but those were two things that we were already aware of and Benjamin has noticed as well. Thankfully there hasn't been anything else new. They played some video games together, and Tina promised to come back for the big match on Thursday.

We've had a lot of snow for our area, and the boys are really excited to do some playing and sled-riding today. We get really cold here, but we don't get the snow usually like his grandparents get up in Ashtabula (the snow belt),and Benjamin is always jealous of their snow. He's so afraid the snow will melt before he can get out there, but there's no chance of that - haha!

Benjamin has been so happy to receive all of the guestbook messages and e-mails from all of you about how much you liked the name he chose for his new baby brother. He's so proud of himself that he got to choose the name and that people seem to like what he picked. He wants to have Thomas for the baby's middle name, Brian wants to have Matthew for the middle name, and Zachary wants the baby's name to be Jeremy Vacuum - he's always the clown of the group, which is tough to do in this house - all of these guys are so funny and love to joke around! I guess I shouldn't be surprised at the names Zachary is coming up with - we just found out that he thought his own name is Zachie Willem Bones (for Zachary William Jones).

Thank you for stopping by to check on Benjamin, and thank you for praying for him and his little friends as well!

Love, The Jones'

Saturday, January 22, 2005 9:35 AM CST

Hi everyone!

**Update - New pictures from the fire station!!**

We would like to ask all of you to keep a very special little boy in your prayers - Brant Hamilton. He recently relapsed from an ependymoma (another type of brain tumor)and had started a new chemo. Yesterday was his MRI to check on how well the chemo was working, and sadly his family received the news that parents never want to hear. Thankfully Brant is feeling very well and is symptom free, but I'm sure his family would appreciate all of our prayers during this very tough time. They have been extremely supportive of Benjamin and of our family, and our hearts are so heavy for them. His web link is here BrantThomas (Thank you to Jeff Thomas for the tips to make automatic links to our friends' web pages!!).

Benjamin has been feeling really well this week after a little bit of a rough start. We had decided to try again with his medicine Megace to spark his appetite, and his nurses from hospice had warned us that it would be fine to try it, but his body may just be trying to tell us that he doesn't want or need that much food. They said that overloading him with food might make him more nauseated, and unfortunately that was the case. The poor little guy had pizza on Sat. night, which was a big first - he used to love pizza, but he hasn't wanted that in a long time. He had a couple pieces of pizza and some pop, which doesn't sound like alot, but compared with how he has been eating over the past few weeks it was just too much. We were so happy and excited to see him eat that we forgot all about the warnings, and Benjamin paid the price. He got sick and his little belly wasn't the same for a couple of days. We immediately stopped that medicine. It just isn't worth it to make him eat more and have him throw all of it up instead of having him just eat less, but keep it all down. He's back to eating how he has been for the last few weeks -mostly bland, breakfast kind of foods - toast, bagels, yogurt, applesauce, cereal, and an occasional toasted cheese sandwich. He eats small amounts, but at least it has stayed with him.

Benjamin had a wonderful treat from his friend and hospice nurse, Paul. He just thinks the world of Paul and looks forward to his every visit. Paul wrestles and does all the things that every 8 year old guy thinks is cool. He is a full-time fire fighter, and he invited Benjamin and our family to come visit his fire station in New Albany. The boys were so excited and couldn't wait to get there. First Paul took us all around for a tour of the station, and then he and Benjamin had a little work-out in the weight room. Benjamin was just in awe of that weight room and I didn't think he would ever leave it. Then he took us out to the garage to check out all the vehicles and he let the boys get inside for pictures and everything. The biggest surprise came when Paul put Benjamin up in the front seat and told us all to climb in the back of the huge ladder truck. I thought we were just going to pose for pictures, but Paul started the truck up and pulled out and drove around the parking lot at the fire station. Benjamin was bouncing all over in the front seat - he was sooooo excited! We went around to the back parking lot and all got out of the truck, and then Paul and another friend of his at the station helped Benjamin, Zachary, and I into the bucket for a big ride up 60 feet in the air! The ladder goes up 80 feet, so we went up quite a ways - what a view!! The boys got such a kick out of it all, and Zachary was the quietest I've ever seen him (those of you who know him know that he NEVER stops talking!). When we got back on the ground Paul took Brenda (another friend from the hospice team) for a turn to go up 60 feet in the air. That was when it really hit Benjamin just how high up we went - he couldn't believe it. It was a really fun and special day, and we'll try to get some pictures posted pretty soon. The boys felt so at home with the guys from the fire station and didn't want to leave. Benjamin asked if he could spend the night there, and when we got home Zachary said "Paul's house is cool, can we go back there?" We all got a kick out of how he thought Paul lived there. We really appreciate what a special afternoon that Paul and Brenda put together for Benjamin - he's still talking about it!

Next week Benjamin has a big wrestling match against Paul scheduled, and his other nurse, Tina, is coming along too to be in the audience. Benjamin is putting his two wrestling belts up against Paul's two wrestling belts - winner take all! Benjamin is in serious training this week - he has been using my handweights and pumping iron in preparation - it is so funny how seriously he's taking it all. He and Paul have been trash-talking each other and reminding the other one to polish up the belts and to dream about the other one's belts since that is the only way they will see them. Benjamin has finally met his match in trash-talking!

Tina (his hospice nurse) came to check on Benjamin this week, and she said that he's doing really well. The only things that stand out are the low appetite and that he is more unsteady, but those were two things that we were already aware of and Benjamin has noticed as well. Thankfully there hasn't been anything else new. They played some video games together, and Tina promised to come back for the big match on Thursday.

We've had a lot of snow for our area, and the boys are really excited to do some playing and sled-riding today. We get really cold here, but we don't get the snow usually like his grandparents get up in Ashtabula (the snow belt),and Benjamin is always jealous of their snow. He's so afraid the snow will melt before he can get out there, but there's no chance of that - haha!

Benjamin has been so happy to receive all of the guestbook messages and e-mails from all of you about how much you liked the name he chose for his new baby brother. He's so proud of himself that he got to choose the name and that people seem to like what he picked. He wants to have Thomas for the baby's middle name, Brian wants to have Matthew for the middle name, and Zachary wants the baby's name to be Jeremy Vacuum - he's always the clown of the group, which is tough to do in this house - all of these guys are so funny and love to joke around! I guess I shouldn't be surprised at the names Zachary is coming up with - we just found out that he thought his own name is Zachie Willem Bones (for Zachary William Jones).

Thank you for stopping by to check on Benjamin, and thank you for praying for him and his little friends as well!

Love, The Jones'

Saturday, January 15, 2005 10:35 AM CST

Hi everyone!

**Update - New pictures on the photo page**

We won't keep you waiting - Benjamin and Zachary are thrilled to tell you that they are going to have a new baby brother!!! I had my appointment yesterday, and Brian, Benjamin and I went to the doctor's office while Zachary stayed with our friend, Brenda, from the Hospice team. She has been a wonderful support and was so kind to even come over on her day off to watch Zachary for us. He had lots of fun playing with her all morning. We would have loved to have brought Zachary, too, but very often there is a long wait before we can see the doctor, and we didn't think that Zachary would be able to handle that. As it turned out we did have to wait quite a while because of a big back-up, and we were amazed by how well Benjamin did to wait that long. He brought his Gameboy and was very patient, but when we noticed the time and that it was getting close to time for his visit from his nurse, Paul (Paul always wrestles with Benjamin at each visit - huge bonus points - haha!!), then Benjamin started having second thoughts about waiting for our turn. He asked if Brenda could come over and pick him up at the doctor's office, and we told him no because she didn't know where the office was, and also she didn't have the car seat for Zachary. Then Benjamin came up with a great idea - he asked if Brenda could just put Zachary in a box in the car and come get him anyway - haha!! We told him that wouldn't really be very safe for Zachary, and then Benjamin noticed that a taxi cab was waiting in the parking lot after dropping off one of the patients, so he asked if he could just take a cab home. We convinced him that we were next in line and that we would make it home in time to see Paul. My doctor, Dr. Briggs, also delivered Benjamin and he knows the whole story of what is going on with Benjamin, so he was really happy that Benjamin could come along on this visit, and he made Benjamin a very big part of the appointment. This new little baby was kind of ornery and didn't want to cooperate to let us know that he's a "he," but Dr. Briggs was patient and waited him out, and we were able to see convincing evidence of who we will be meeting in a few months. Benjamin was so excited to hear the baby's heartbeat and to see the baby moving all around. The baby even looked like he was waving to Benjamin at one point, and Dr. Briggs made sure to point that out for him. He even printed off a few extra pictures of the baby for Benjamin to have for his own to show off to people. Benjamin really hadn't cared if this baby is a boy or a girl, but he had bets going with so many people (and he had bet "boy"), so he was thrilled to find out that he had won all of his bets. He's been making his phone calls to make his announcement and rub it in - haha!! The funny thing is that Benjamin gets on the phone and says "guess what, I'm having a new baby brother!" and then Zachary grabs the phone away and announces "guess what, I'm having a baby sister!" That really throws people off, and we have to tell everyone to listen to the big kid and just humor the little one. I guess he must have had his little heart set on a sister, who knows? We had also told Benjamin that (pending our approval - no cartoon character names allowed - haha!) he could pick out the baby's name. We were careful, though, and made sure that any name suggestions that we threw out there would be names that we (and especially this baby) could live with. Benjamin has picked out the name Jeremy for his new little brother, and unless something major changes that is probably what we will name him. We all like the name very much, and it just feels like a good fit! The guys are still battling it out over a middle name, but I tease them that if they keep fighting about it I'll just name him myself after he's born and let them know what I come up with -haha! Zachary is doing a better job with pronouncing the name this morning - yesterday he was calling the baby "germ-y," and Brian said that if his son gets teased in school and is called "Germy Jones" he refuses to take any responsibility. We got a good laugh out of that one! Today Zachary is saying Jeremy very clearly, but he's added the middle name "Kelso," from one of the characters from That 70's Show on TV. At least he's given up on Tony Micelli Jones!

Benjamin has had a pretty exciting week, and he's still feeling very well. He had his big trip to Toys R Us to spend the last of his Christmas money, and he's so glad now that he waited for the after Christmas sales because he got some really good deals - more for the money!! He also had lots of visitors this week, and he really enjoyed that. We've noticed more little changes again this week, but thankfully at least he's feeling well. His appetite has really dropped off quite a bit, but his hospice nurses tell us that it is not unusual. At each meal he eats about half of what we give him, and each "meal" isn't really very big anyway, but as long as he's drinking well and trying to eat what he can, when he can, that is still alright. We have some medicine to try to spark his appetite, but the only problem they told us is that his body may be trying to tell us that he doesn't need or want as much food, and adding more than he's ready for may make him really nauseated. They said we could go ahead and try it, and then we just have to watch him and pull back the medicine if it all backfires. The majority of the time he only wants things like toast, bagels, appleasauce, yogurt, or cereal, too, but his nurses were pleased with his choices, at least because he's going for things that are good for him and will give him some more energy. He told us this week that he feels like he's stumbling more, and he is. We had noticed it too, but didn't say anything because we don't want to draw his attention to things that aren't bothering him. His pain control has been really good the majority of the time, too. Last night he did begin having pain in his ankle and foot, and shortly after that couldn't walk on his foot at all, but thankfully it passed fairly quickly and he is fine today. This morning, though, when he was having his breakfast he spilled his milk all over himself. Normally I wouldn't think that much of it because he is still an 8 year old boy after all, but it seemed to really bother him. When I asked him why, he said that he doesn't understand how it happened because he was just holding his cup and then all of a sudden he felt a jerk in his arm that he couldn't control and then the milk went all over. He's spilled milk lots of times, and it never usually gets him worked up, but he just kept saying that he couldn't understand why his arm would move like that when he didn't make it happen himself. We have lots of sippy-cups that we didn't really want to use for him because it might make him feel self-conscious, but then we thought that if it is bothering him this much we could give him the sippy cup and just tell him that it is just so he won't bump it accidently while the boys are sitting together, or so Zachary won't bump it and knock it over. We'll just wait and see because sometimes things happen once with Benjamin, and we start to think that things are really changing, and then nothing more happens. Maybe the arm jerking thing will be like that, too. At least Benjamin hasn't had the problem of morning vomiting as soon as he wakes up like he did the week before. He does get nauseated a little bit more easily - like certain smells will bother him more when we're cooking - but they seem to pass without an incident. Bit by bit we're seeing more things, but mostly they've been pretty minor, and overall Benjamin feels well.

That's about all of the news from here. Hope you all have a great weekend!!

Love, The Jones'

Saturday, January 8, 2005 10:47 AM CST

Hi everyone!

Hope it has been a good week for you all! Benjamin's week has been pretty good, but kind of disappointing in that we've seen some more little changes. He continues to feel well and to enjoy all of the things that he likes to do, though. On Monday and Friday mornings he woke up and immediately said that he was going to get sick after he first sat up in bed. On Monday he did get sick, but on Friday he did not. He was completely fine for the rest of both days, and he ate well and played well as if nothing had happened. Both days he did indicate that he felt "drippy" in the back of his throat, and we're really hoping that the problem was more related to sinuses, but this is exactly how things were before he was diagnosed - the icky feeling and throwing up right after waking up. Back then he said he felt "drippy" too, and for a long time we were all convinced that this was all just a sinus problem. Tuesday and Wednesday were good days, and then on Thursday Benjamin was a having a problem with one eye, but he wasn't really aware of it. Every time he looked at us we noticed that one eye was nearly closed, but when we asked him about it he said that his eye didn't feel like it was closed. He also had a few small headaches on Thursday and Friday, but fortunately they were the kind that went away fairly quickly and didn't even need Tylenol or Morphine. He also said on Friday that now he tries not to pop up too quickly if he's sitting down or laying down because that makes his head hurt. Overall he has really felt pretty well, and we're thankful for that, but after going for about a month with no problems it was sad and a real letdown to have him go through some more changes again. Hopefully things will just level out again for a long time!

We don't have much planned for the weekend. We'll just be at home getting caught up on things that we've let slide for awhile. We've still got a few bags from Christmas that need to be unpacked and mountains of laundry to work on. The boys have plans on hitting Toys R' Us to spend some Christmas money - as if they need some more toys around here right after Christmas - haha!! We've also been working on getting a deck bracket mounted to hold a bird feeder that Benjamin painted for the family. The bird feeder is ready to go, and the boys are excited to have some birds come visit and hopefully make a home there. Mrs. Brinda is coming to work with Benjamin on Sunday, and he's really looking forward to that since they haven't worked together since before Christmas. This coming Friday is our doctor's appointment for the baby, and the boys are really excited to find out about the baby. Benjamin said that he dreams about the baby every night, and in each dream the baby is a boy who looks like Zachary. He just hopes that this baby has more hair than Zachary did - haha! Benjamin wants the baby's hair to be like his was - Benjamin looked like he was born wearing a little toupe'. We'll see... I'm feeling better, but the morning sickness isn't gone yet - it can't last much longer, I wouldn't think, since we're starting week 16, but you never know - haha! That's about all of the news for the week. Have a great weekend!!

Love, The Jones'

Monday, January 3, 2005 7:12 PM CST

Hi everyone!

Happy New Year!! We celebrated very quietly at home, just the four of us. We did stay awake past midnight to ring in the new year - the boys are still on their "Ashtabula schedule" (every night that we were there they stayed up until 1:00am!!) - so they easily made it to 2005 - haha! We really don't have much new to report, which actually is a good thing, but I wanted to update so we wouldn't worry anyone. Benjamin has been feeling well and playing hard with his little brother. I don't remember if I mentioned this before, but he is no longer on any chemo. We wrestled with the decision during his one week break from this latest type of chemo that we tried. The decisions just never seem to get any easier, but it just really came down to quality of life for Benjamin. We've tried to keep that as our guide all along, but the choices never seem like "real" choices, and we just try to make the best one possible for him. During the time of diagnosis we looked for whatever treatment would give him the absolute maximum that his body could take without going too far and would still leave him with a good quality of life when treatment ended. When he relapsed and there wasn't any real chance at a cure anymore than things shifted to letting him just enjoy his life for as long as is possible and ensuring that he felt as well as possible. We're really not sure if he has even noticed that he is no longer on chemo because he has to take so many pills each day, and we always used to say "come take your pill," rather than "come take your "chemo pill," so we don't think he really knows the difference at this point. We don't like keeping him in the dark, but for now why burden him with more - we're letting him just enjoy his little life. If he asks us about the chemo we will have to tell him, but we just don't see the need in upsetting him or letting him feel like he's given up. For him he still feels like he's fighting. Unfortunately every time we try chemo we see signs of more rapid progression like the bad headaches, worse balance, eye troubles, etc... and when we stop chemo everything seems to even out again. The chemo that he was on for about three weeks before Christmas was one that was suggested just to get through the holidays, it would NOT be a cure, and while we're so grateful that we were able to celebrate the holidays with him, we could see a tremendous difference in him from the three weeks on the chemo compared to the few weeks that he has been off of it. His energy has shot back up again, he is so much stronger, and he's stopped needing so many rests or naps (he had started needing to nap about 5 out of 7 days a week - which is unheard of for him), most importantly we really haven't seen any signs of changes for a few weeks. To see him running around you wouldn't even guess what is going on inside of him - it is still so hard to believe. Thank goodness most of these side effects had worn off by the time he celebrated Christmas and he was able to go non-stop. His quality of life is just so much better - he feels, acts, and looks so much better and stronger.

The boys are spending their time playing with their Christmas presents and settling back in after the holidays. They had a couple days of sniffles and croaky sounding throats, but nothing more happened. Brian and I are slowly but surely trying to catch up on sleep. We go back to the doctor next week to hopefully find out if a brother or sister is joining the family. We've kind of stopped trying to pick out names until we know what we're having. Zachary still gives us his suggestions, though. He loves watching re-runs of "Who's the Boss?" and this week's name suggestion for the baby was Tony Micelli Jones. He cracks us up with the names he comes up with.

My friend Ivy told me about how Caringbridge can set up a second guestbook page for people when their guestbook gets filled, and so now Benjamin has another page set up - the loading time is so much quicker (you still just need to click on View Guestbook). Thanks for the tip, Ivy!! We really appreciate all the messages that you all have left for Benjamin and for the family! We really enjoy hearing from you!

Love, The Jones'

Tuesday, December 28, 2004 7:06 PM CST

Hi everyone!

We hope it was a very Merry Christmas for you all, and we'd like to thank you for all of the happy Christmas wishes that were sent Benjamin's way!

Things started off a little bit rocky before Christmas, but not due to any health reasons. Just as so many places around the country were hit by pre-Christmas storms, our area was hit with a big ice storm. Many people lost power, us included, and there are still some without it! We woke up the day before Christmas Eve to a very cold house and lots of questions from the boys - "do the video games work?" "does the TV work?" "what can we eat?" etc... the loss of video games was the toughest blow to Benjamin, but he learned to switch to the Gameboy and pace himself since he couldn't charge up the battery - haha! The boys just sat in front of the blank TV screen staring at it like they could "wish" it back on, and Brian and I joked that it was pretty pitiful that they are so conditioned to still sit in front of the TV even with no power - haha!! We were very lucky to have the fireplace and also to have a gas stove, so we were able to stay warm and also heat up things to eat. Our very good friends, the Brinda's (Nancy has been Benjamin's tutor and good buddy for years), invited us to come stay at their home, and it was a wonderful way to share Christmas!! We really appreciated the warm home, the delicious meals, and especially the fun company and good times we all had while staying with them. Benjamin was thrilled when Nancy called with the offer to come stay. We were actually afraid that the power might come back on by the end of the day because we knew that he would be crushed if we didn't get to go. The kids had a ball playing with everybody, baking cookies with Amy, and running around out in the snow to take their dogs out. Benjamin was so cute when we pulled back in the driveway at our house the next day on Christmas Eve. We weren't sure yet if our power was back on, and we'd been invited to come back if it was still out. He told us that he was hoping that we still wouldn't have power so he could go back to stay at Nancy's.

We spent the afternoon on Christmas Eve getting things organized back at home because the house was chaos from the boys trying to keep busy by taking out ALL of their toys during the power outage. We just packed up and bugged out and left the mess behind us when we went to the Brinda's. That evening Benjamin had a great time tracking Santa on a web site on the computer - he was fascinated by the satelite pictures from NORAD. Christmas Eve is the one night of the year that we don't have any trouble convincing Benjamin to go to bed, and he was asleep relatively early. He was hilarious when he woke us on Christmas morning - he said "Santa DID come last night!!!" like he had had his doubts whether it would actually happen. We kidded him about if he was worried if he had made it onto the "naughty list" or something. Benjamin tore through all of his presents and totally enjoyed himself, while his little brother opened one thing at a time and wanted to stop and play with each gift - his unwrapping took quite a while - haha!! We had a slow start to the morning and just let the kids play with their toys, and then we got ready to travel to Ashtabula to visit with our families. We had been iffy on whether we would make it anyway just because of not knowing how Benjamin would be feeling, but the big storm that hit all over Ohio had us guessing too whether or not we would make it out. We were very lucky to have totally clear roads for most of the way and very little traffic. We hadn't been back to Ashtabula since last Christmas so it was very special to be able to get back there. Benjamin has been wanting to go for so long, but every time we tried to make plans for a visit something would happen with Benjamin's health, and we were afraid to take a chance and travel with him. This time, though, Benjamin felt great through the entire long weekend, and he had a ball every minute!! He was so excited to get to all of his grandparents' houses and to be able to spend the night at his cousin Ashley's house two times. Zachary was so funny because he knew all of the people everywhere we went, but he didn't remember any of the houses. When we pulled in at my parent's house he put his little arms up and shrugged him shoulders and said "what is this place?" He got things figured out pretty quickly and also had a great weekend. We all really enjoyed being able to visit with family and get caught up with everybody. We had Christmas at my parent's house with my Mom and Dad, Gram, and Aunt Kate and Greg from Chicago, Brian's parent's house with his Mom and Dad, Uncle Chris, Aunt Adria, Ashton, Aunt Kim, Uncle Tim, and Ashley, and a dinner and Christmas get-together at Aunt Kim and Uncle Tim's. Every time all the cousins got together there was lots of giggling and tearing around and non-stop fun. It was very special to see everyone, and especially Benjamin, enjoying themselves so much. It was hard not to think back to last year when he was in remission and we were so full of hope for many happy Christmas' to come, or not to look ahead to what next year might be like, but I can honestly say that those thoughts really didn't creep in until each day was over, so that kind of thinking didn't spoil any of the fun during each visit to people's houses. He had a wonderful Christmas, he felt fantastic and pain-free, and he played and played to his heart's content. He didn't hold back from any of the fun, and that is all we can ask for right now.

We just got home late this afternoon, and we're just getting ourselves settled back in and trying not to trip over all the new toys. These boys were very, very lucky with all of their new toys, and they have absolutely no excuses if they are bored - haha!! Well, that is about all that is new here, and we hope that all of you had a wonderful Christmas as well!!

Happy New Year from the Jones'!!

Tuesday, December 21, 2004 10:19 AM CST

Hi everyone!

Well, after the horrible week that Benjamin had previously we're so happy to say that this past week has been one that was nearly normal again. No more headaches, and only a couple of brief episodes of nerve pain. Benjamin came out to the kitchen to take his medicine the other night and he told me that his foot had fallen asleep. When I asked him if he had been sitting on his foot or something he said that he hadn't, but that while he was standing there it just fell asleep. Not what we wanted to hear, but definitely a better week than before. Really the only other change that has taken place (but is still pretty significant) is that Benjamin has started putting things together on his own, and he started asking questions again about "when" he dies, not "if" he's going to die. He was having alot of trouble sleeping, just tossing and turning, and finally he just came out with it all to his Daddy. He said he was sad that none of these medicines seem to work, and he wanted to know if it was going to hurt when he dies. Brian said that he was really accepting of it all and seemed ok with it once he understood that we have all kinds of medicines here to keep him comfortable. We had planned to be honest with him if he asked any questions, but we had really hoped that he would at least not figure things out until after Christmas. He still hasn't given up, though, and from time to time will talk about things he's going to do when he grows up.

Benjamin is really getting excited for Christmas and he's had a head start on opening some presents that have come by mail. In years past I usually let him open one or two presents that arrived early, but this year we figured why not just let him open them as they come and get all the enjoyment out of them that he can. When he was having the bad week and then the bad headaches a week ago Sunday one of his hospice nurses told us that we'd have to watch in the days ahead for repeat patterns of what we were seeing, and if that happened we may want to move up our plans for Christmas so that he could be a part of it all, but thankfully things seem to have settled down again and we're not seeing any patterns of progression yet. So our plans for Christmas are just as they were, and hopefully he will be feeling as good as he is now to enjoy it all!

Other than that, not too much is new around here. My brief record of days without getting sick has ended, so I guess the morning sickness isn't quite over yet - haha! It is much better than it was, though. The boys love looking at books that have pictures of babies at each week's stage of development, and they are thrilled that this week the baby has stopped looking like an alien and now should look like a real baby. The great name debate has been keeping us all busy, and entertained, since we have an 8 year old and a 2 and a half year coming up with their best ideas. Benjamin's ideas change almost daily, and Zachary's latest is "Anthony Marie!" He asked me "how does this name sound Mommy - Anthony Marie?" I told him that I liked those names, but maybe not in that combination. It took us a few days to realize that his idea was really "Anthony" "Murray" after his two favorite Wiggles from the Disney show - haha!! We all got a kick out of that one. Benjamin usually picks names that are his favorite cartoon characters and most of them sound pretty good, but we've got our work cut out for us still. At the next appointment we should at least be able to narrow down to just boys or just girls names if the baby cooperates with my doctor. We'll keep you posted!!

We hope you all enjoy the holidays with your families and friends, and we thank you for keeping Benjamin and his little friends in your prayers!! Merry Christmas!!

Love, The Jones'

Wednesday, December 15, 2004 4:46 PM CST

Hi everyone!

**Update - I'm sorry, I had intended to share Brant's web address when I updated Benjamin's page yesterday. Here it is: www.caringbridge.org/ia/brant_thomas

Please say some extra prayers for our little friend Brant and his family. They just found out that he has relapsed to his spine from an ependymoma brain tumor. Chemo is no longer an option, and Brant just had surgery this morning. I'm sure the extra prayers and support would mean so much to them all.

I'm sorry that we've been delayed in getting our updates out there. I wish I could say that things have just been cruising along as usual, but Benjamin has started experiencing some changes. Last week was a really tough week for him starting a week ago Sunday. He started having nerve pain that was especially uncomfortable and painful in his right shoulder and in his lower ribcage on his right side. Our biggest fear was that this was bone pain since it has been suspected that his cancer has spread further through his bones than what was first discovered on his last scan in Nov. It was also possible that the tumors in his spine in the location near his heart might be causing pressure and leading to nerve pain. He was started on a nerve pain medication, and thankfully by Thurs. the nerve pain had disappeared!! The pain wasn't constant or especially long lasting (except on that first day a week ago Sunday), but it was obvious that it caused him a great deal of discomfort, and we're so relieved that it looks like for now anyway the pain is in the nerves and not the bone. I guess it may seem strange to be thankful for that, but the reason is that bone pain becomes excruciating and is extremely difficult to bring under control. At least for nerve pain we can do something for him, and it seems to be working. It is horrible enough to face what is ahead for him, but the thought of him being in unbearable pain is just too much. After the nerve pain was brought under control Benjamin had a couple of good days and enjoyed a great weekend with Gramma and Boppa. Unfortunately on Sunday of this past weekend things changed again. Normally Benjamin bounces out of bed early every morning and goes right to his video games. However, on Sunday morning he slept in a little bit and when he woke up he looked like he hadn't had a minute of sleep all night. I know that he slept alright, though, because he was with me all night and he never moved a bit. That seemed strange, and then when I asked him why he wasn't playing his games he sighed and said "I'm just so tired, I can't get up." He finally did get up and play a little bit, but then the headaches started. Benjamin has really been blessed in that he hasn't had any headaches, other than slight twinges here and there that are gone before I can even give him a Tylenol, but the headaches were just unrelenting on Sunday. We gave him Morphine for the pain, but that didn't even touch the pain. Benjamin's hospice nurse, Deborah, told us to go ahead and repeat the dose every two hours rather than every four hours, but that really didn't help either. On a scale of 0 to 5 his headaches hovered around a 3 to a 4 the majority of the day. Deborah was really wonderful and came out to our house on Sunday afternoon to check on him and to confer with his doctor over what the next step should be. After spending the whole day with a pounding headache and frequent vomiting Benjamin finally fell asleep at around 6:00pm. Shortly before that some new pain medication was sent out from Children's - a Fentinal (sp?) pain patch - and when Benjamin woke up four hours later he was pain free and HUNGRY! It was a really hard day for everyone, most especially Benjamin, and we're really grateful that my parents were here to help us, as was our friend Nancy Brinda and also for the loving care from Deborah. Benjamin has gone painfree the last few days since then, and we hope and pray that this continues.

The only slightly humorous thing to come out of all of this was that Benjamin had some reaction to his painpatch. We later found out that he must have metabolized the dose very quickly - it is released through his skin over the course of three days, but he soaked it right up pretty quickly, and we haven't seen him that grumpy since the days of his evil twin who came back to us each morning after his radiation treatments. He didn't do well with that sedation at all, and he let us, and everyone in his path, know exactly what he thought of us all. I still thank God that at the time the worst things he could come up with were "idiot" and "poopie-head!!" Poor Zachary bore the brunt of this reaction, though, and he couldn't even breathe without getting into trouble. Benjamin was playing his video games and Zachary was sitting nearby playing with some toys and talking softly to himself, and Benjamin told him "why do you have to be all over me and you talk way too loud!!!" After two days of this we finally found out what the problem was, and the pain patch was removed. It has been peaceful and smooth sailing ever since. Benjamin thinks it is all pretty funny now, and he still insists that Zachary has a megaphone mouth - haha! We were joking about all of it with Deborah while she was here today for Benjamin's blood work, and Zachary grinned and told her "Benny was scary!!"

Thankfully things seem to have settled down for Benjamin now and hopefully we'll get through the holidays with no more days like last week. He is about beside himself waiting for Christmas, and Zachary asks every day if it is Christmas yet. We're looking forward to seeing family and friends for the holiday and to making this year as special as possible. The morning sickness hasn't decided to go away yet, but hopefully the light is at the end of the tunnel for that - haha! Benjamin has been a huge help to me - he follows me to the bathroom when I'm getting sick and he brings me tissues. He is so on alert that even if I sneeze he stops what he's doing and asks if I'm getting sick. What a sweetie!!

Well, that is about all that is new here. It hasn't been the easiest week and a half, but things are looking up again. Please say an extra prayer that he remains pain-free, and please keep the other children who are fighting cancer in your prayers.

Love, The Jones'

Saturday, December 4, 2004 4:17 PM CST

Hi everyone!

We hope it has been a good week for you all! Benjamin has enjoyed a week of feeling well, playing well, and having fun visits. Our friends from hospice came out on Monday and again on Friday to check on Benjamin's blood counts. On Monday we were disappointed to find out that his counts had dropped significantly, and we weren't surprised that Benjamin was feeling more tired than usual. We were also pretty nervous as to how far his counts would still drop since he was only one week into this new chemo. It is so important to Benjamin to still be trying something, but Brian and I still went back and forth over whether this was worth it in the long run if his counts were going to leave him so sick and vulnerable. While not on chemo over the summer Benjamin's counts were fantastic and his strength and energy were always amazing. It worries us sometimes whether the timing is coincidence as for how quickly things started growing and changing once he started back on chemo in Sept. In just that two months time there were alot of changes. Our biggest worry is that he will pick up some kind of bug that he doesn't have the strength to fight because of low counts and that we'll lose him even sooner. Who knows? We decided that maybe we'd ask his hospice nurse to come back out on Friday to see how much lower his counts had gone and if they'd dropped way too much than we would re-evaluate. We did find out some good news from his nurse, Suzanne during the middle of the week. If his counts dropped too much we could just stop the chemo for a few days to allow his counts to recover and then we coud re-start at an adjusted lower dose. This seems like the best of both worlds because Benjamin can still feel that he is fighting, but we can make sure that his counts stay alright. Well, after Benjamin's blood draw on Friday we're so pleased to find out that while Benjamin has been able to say on the same dose of chemo his counts actually came back up on their own!! So for now we'll continue with the plan as is, and hopefully we'll hear the same results after each week's blood draws! I asked his hospice nurse, Deborah, if this meant that his counts will probably hover around this number since he's almost two weeks into it now. She said that we can't be sure of that and we'll continue to monitor each week, but this is a very good sign! Yea!!

Benjamin also met one of his new hospice nurses yesterday, and Paul was a HUGE hit. You can tell that Paul must be a very fun Dad to have at home because he got right down on the same level as our boys, and they played wrestler guys, real wrestling, and also had a sword fight with paper towel rolls. Paul asked Benjamin every once and a while if he was getting tired, and Benjamin wasn't about to quit. He just had a ball, and I didn't think he was going to let Paul out of here to go back to work. Benjamin has always enjoyed having his hospice nurses Tina and Deborah come over because they always play games, too, and I can tell already that Paul is going to be a great addition to the team!

After all that playing and wrestling we thought Benjamin was going to be tired, but he jumped right into a visit with Nancy Brinda after that. They did schoolwork, painting, and Benjamin's personal favorite - counting out the money in Benjamin's piggy bank. They always have the best time together!

We also spent the last few days having a wonderful visit with my parents. They hadn't been able to come down for several weeks after my Mom had some surgery to repair damage to her elbow after a fall, so we were all really looking forward to seeing each other. They arrived on Wed. afternoon and Wed. night we had a really nice night of putting up our Christmas tree and decorating it together. It was a lot of fun and a trip down memory lane since many of the ornaments were from when I was little and living at home. It was also really great to have the support from their being here as well. The last few weeks have really been draining, to say the least, and it meant alot to spend time together again. They came down last May the day after we found out about Benjamin's relapse, and they stayed all summer, so they've been through all of the ups and down of the times of last summer with us.

Benjamin continues to feel really well. This past week he did have two mornings when he woke up and thought he was going to be sick which feels all to familiar since morning vomiting is such a classic symptom, but all of our sinuses have been bothering us the past few days, so we're just going to wait and see since it is so hard to tell anything. He told me twice this week that his vision seemed shaky again, but these episodes were very brief. Hopefully we don't see anything else going on. None of it seems to disturb him and that's all that we care about.

We do have some news to share that has certainly lifted Benjamin's spirits these last couple months and has given us something hopeful to look forward to. We found out just a few weeks before Benjamin's last scans that we're going to have another baby. Surprise!! I'm about 10 weeks along now, and I had my first doctor's appt. yesterday. My doctor said that so far everything looks fine, and we could see the baby moving all around on the ultrasound. We are definitely going to find out the boy/girl question - if the baby cooperates, and Benjamin is coming to my next appt. My doctor said that he should be able to tell at that appt. and we're doing everything we can to make Benjamin a part of all this. Of course with such an uncertain future emotions are running high for me and for Brian. This is such bittersweet news for us all. We're so thrilled about the new baby and can't wait to meet him/her, but at the same time we don't want to wish away this precious time we have with Benjamin. How do you prepare for two completely opposite situations as a parent - one being one of the happiest days as when a new baby is born and joins the family, and one being facing the worst fears a parent can have about losing a child who is so dearly loved. I apologize to everyone who has tried to call or e-mail lately if I'm slow in responding. I will call back, I promise, I've just been really sick with this pregnancy and also the last few weeks really felt like I was hitting rock bottom while trying to process so many different emotions. The last few days have felt alot better, and slowly but surely it feels like I'm back in the human race - haha! Brian has been wonderful and so much of the housework, child-care and everything has fallen on his shoulders. My parents were also a huge help!! After everything that Benjamin has been through, and is still going through, I've felt like a huge baby just laying on my air mattress on the living room floor with my "puke box," as Benjamin calls them. The boys have been really well-behaved, although it has taken them a while to get the idea of not bouncing on the mattress - that really makes Mommy feel icky!! Haha!! Benjamin and I have even been taking the same anti-nausea medication, and he gives me all kinds of tips on how to make it better. He's also been wonderful every morning when he wakes up. He gets Zachary up with a good-morning hug and kiss, and then he takes him to watch cartoons or play games together. It really seems to make him feel very important to have this "big brother" job, and he takes it very seriously. He keeps Zachary busy for awhile so my medicine can kick in, and then we can kick off the day. It has really made me realize how awful he must have felt during treatment when he'd start off every day throwing up 4 or 5 times. I wake up and just want to cry when I realize the morning sickness isn't gone yet, and then I think about how he did that every day for probably 7 months, and he NEVER once complained. He is way tougher than I am!!

Well, that's about all the news from the Jones household. We hope you're all enjoying the holiday season, and we thank you for keeping Benjamin in your prayers!!

Love, The Jones'

Saturday, November 27, 2004 10:51 AM CST

Hi everyone!

We would just like to thank everyone for the overwhelming amount of love, support, prayers and encouragement that we have received through cards, e-mails, guestbook messages, and phone calls. We can't even begin to tell you how much this has meant to us!! Hearing news like we heard a week ago is so devastating and crushing, and sometimes it is the lonliest feeling in the world, but knowing that so many people out there love Benjamin, and are praying as desperately as we are, really does bring us comfort.

Benjamin has had a wonderful week of feeling great and enjoying doing all of his favorite things, and Brian and I have in the last couple days started coming out of the shell-shocked state we've been in since last Friday's scans. It has been so much harder this time, as I said before, because we have nowhere else to turn. Acceptance of reality is slow in coming, and I know that we're not fully there yet, but day by day we're getting there. We're still so hopeful that the new chemo that Benjamin started will slow things down tremendously (and we always hope for that miracle of a complete turn-around). Thankfully Benjamin has (so far) not shown any signs of a bad reaction to this new chemo (called VP 16). There are two ways of taking this medication, orally or by IV, and from what we understand it is the kids who take it orally, as Benjamin is, who have an easier time of it. Taken orally usually means less sick feelings, better counts (even though his counts will still drop dramatically), and usually no hair loss. So far Benjamin has felt well and the only side effect we've seen has been fatigue. His counts are going to be checked every Monday, and each week we'll base our decision on whether to continue this chemo on how well he's feeling, how badly his counts are affected, and on what Benjamin wants to do. At this point Benjamin wants to be on chemo and says that even if this chemo makes him very sick he won't stop taking it because he wants this to work. It is so heartbreaking to hear him talk this way because we know how hopeful he still is that he will get better. He has so much hope for himself - he talks about things he wants to do next summer, what he wants to be next year for Halloween, even how he wants to go to Ohio State when he's ready to go to college. All we can do is swallow back the lump in our throats and let him hold on to what he needs to. We did re-enroll Benjamin in hospice, but as far as he knows what we're doing is Homecare, rather than Hospice. He has all the same nurses as he did last summer, so that was a very easy adjustment for him and for us. The nurses for Homecare and Hospice are sometimes the same, so for him he doesn't see this as before when we didn't have any treatment options. At some point we will have to tell him, but for now we're letting him enjoy his life. It has been a great comfort for us to be back in hospice, which might sound strange considering what hospice means. However, we have all the support of the wonderful nurses who cared for him all summer, we have care available for any hour of the day or night should it become necessary, Benjamin can have all of his medical needs taken care of here at home (which is a great relief considering how badly his counts will probably be affected), and we no longer have to fight to get all the medications he needs. Thank God for insurance, but sometimes you don't get the things that are necessary without a huge struggle and many, many calls to insurance. Hospice takes up the fight for us, and we no longer have to worry about if he will receive the proper amounts of medications that are so needed. For the most part we didn't have too many problems and I wouldn't even want to imagine what the cost of everything to insurance has been since diagnosis back in May 2002 - surgeries, stem cell harvest, experimental treatments, many hospital stays, PT, OT, clinic visits, medications, etc... we really have been very fortunate, but we did run into alot of disagreements when the insurance doctors didn't agree that he needed the same dosages of medications that his real doctors wanted him to have. That is one stress that has been taken away. Should his health change rapidly, too, we don't have to worry about rushing to re-enroll him. The people at Hospice, as with everyone we've met through the Hem/Onc clinc, Phyical and Occupational Therapy and J5(the oncology floor where the kids are admitted), are absolutely wonderful, professional, and so caring and devoted to the children. We know that, as before, he has always been in the best care.

This past week he has enjoyed visits with Mrs. Brinda and her mom, Grandma Betty, as the kids call her. He also had a visit from some of the teachers at his school, but unfortunately that was the first full day after starting the new chemo and he was sleeping when they got here. He had some wonderful surprises from his school, though. His teacher, Mrs. Ralph, and the second grade class made a great big, colorful Thanksgiving card for him that was signed by all the kids. His art teacher, Mrs. Sheridan, also brought modeling clay and Yu-Gi-Oh cards for him (which he just loved!!) and a beautiful hand-stitched tapestry which included adjectives describing Benjamin. She had asked all of the teachers at Tussing to send her a note with words describing Benjamin, and she then stitched each word on it. It is just gorgeous and so precious to us to look at and to realize how many people he has touched over there in such a short time. Even though he's in second grade there, he really only had one (almost complete) year in the building. He was tutored at home through kindergarten, the last month of first grade, and all of second grade so far.

The days leading up to Thanksgiving were very difficult, mostly I think because we were still in a state of shock. With two very busy and happy little boys it is impossible to stay down for very long. Thanksgiving day itself was really a very happy and enjoyable day, though. We spent the day just the four of us quietly at home. The day before had been very warm so the boys and I went outside to play and put up our outside Christmas decorations. We had a big surprise Thanksgiving morning when we woke up to snow! Benjamin was thrilled!! We didn't get much, but it was enough to make him happy (and make me glad that we did the outside decorating the day before). We did some inside decorating that day and Brian had picked up some movies that Benjamin had been waiting to see. We watched the Garfield the Cat movie and Harry Potter and the Prisoner of Azcaban. Benjamin was also very excited to watch the Charlie Brown Thanksgiving movie that night as well. Brian made a wonderful Thanksgiving dinner with all the trimmings, too! Benjamin's appetite has dropped quite a bit, but he did eat some, and of course he had room for pumpkin pie - his favorite!! All in all, it was a very good day and we got through it just fine.

We hope you all had a wonderful Thanksgiving as well, and we're so thankful for all of your love and prayers!!

Love, The Jones'

Saturday, November 20, 2004 9:37 AM CST

Hi everyone!

I'm sorry for the delay in updating, but we've been trying to get ahold of family members before putting the news out there. I guess there is no other way of saying this, our grace period from this nightmare of the past two and half years, and especially the last seven months, is over. The news from yesterday's MRI was worse than we ever could have imagined. To begin with, all three of the brain tumors have grown while on treatment. I looked at the scans in comparison with the scans back on Sept. 20th, and I am not a medical professional and it was very obvious to see how much growth had occurred. On top of this huge letdown, the doctors original diagnosis of spread of cancer through the spine has turned out to be correct. There were two spots that had been identified, one in the area of his chest (near the heart) and one area at the base of his spine. The area in his chest (which had been thought to be just vascular after his scan in Sept.) is even more enhanced on the scans. All of the little pin-prick sized spots have become nodules and we are back to believing that it is cancer. The area at the base of his spine is unchanged, but because it looks the same as how the chest area appeared the doctors believe it is also cancer which is just slower growing. After letting all of this sink in it becomes even worse. They also found two lesions on Benjamin's skull that are also cancer that has now spread from the brain, to the blood, through to the bone. We hadn't even known that this was possible, and from what we understand it isn't common. All of these things just indicate how aggressive and unstoppable his cancer is. We are at the end of our options and we are completely devastated by the turn things have taken. We are going to lose our beautiful little boy. The doctors have recommended that we do start a different chemo next week just to get him through the holidays. Our decision had been that if his disease had spread to the spine we would not go ahead with more chemo, but we are taking the doctors' recommendation to do a small amount of chemo for a short period of time. We asked if we didn't do any chemo if they thought we would lose him before Christmas, and while they don't believe so based on how slowly things progressed over the summer, there is just no way to know when things will take off.

Benjamin does know that his tumors have grown and that he is going to be starting a new chemo, but he does not know about the spread to his spine and skull. For now we are keeping that information in order to try to let him have this Thanksgiving and Christmas. He does not know how bad this all is, and for the time being there is no reason to burden him with this. We will do the same as we did back in May and let him process everything in his own time and ask his own questions in his own time as well. We can't even imagine how we are going to tell him this again. We've told him once that he wasn't going to get better, then hope came back into our lives again, and now we are going to have to tell him again that he won't make it. It all feels so cruel that he should have to go through this. Never in a million years will this ever make sense. All he wants is to get better, and he is very adament about wanting to try more chemo. For his own comfort we feel that it is important to let him feel like he is still fighting. Of course, if the chemo is too hard on him and affects his quality of life it will be stopped immediately. We will be getting back involved with hospice, but it was recommended that we wait until after the holidays because Benjamin is a smart little boy and he will put it all together if hospice visits start again. If he starts to show signs of going downhill, though, we will be in contact with them right away in order to give Benjamin at home care and allow him to be pain-free. They felt that waiting for about a month would be fine unless his health tells us otherwise.

I can't even begin to tell you how awful we feel. The news isn't as stunning and shocking as it was in May since we did live this way for four and half months, but it is so much sadder since we know that we don't have any more last minute options to pull us out this time. The thought of the holidays is absolutely unbearable, but we will have to keep up the front for him. He still doesn't act as if there is a single thing wrong with him, and that makes it even harder to take. The pictures just don't add up - he's dying of cancer, but he's tearing around the house, shrieking and playing with his brother. Thank God that he is still feeling so great, but it just makes no sense. Our hearts are so heavy and trying to act normal is so hard. The thoughts of what is to come are overwhelming and I truly don't know how we will do this. Nothing will ever be the same.

We had so hoped to have big things to be thankful for this year for Thanksgiving, but it just wasn't meant to be. We do feel grateful that we will have this year with him since we had never even dreamed back in May that we would share this year's holidays with him. It will be so incredibly bittersweet, but it is still a gift. We're also very thankful for all of the support we've had from all of you, our family and friends, who have been behind us all the way. The months to come are going to be horrendous, but it is a comfort to know that we have that love and support lifting us up. I'm sorry to have to send out such a sad update. Thank you all for keeping Benjamin in your prayers, and please keep praying that he will feel well for as long as possible. He is doing fine and enjoying his life, and that is all we want. He's planning a big Buckeye's party for the OSU/Michigan game today. He and his Daddy have a little feast planned, and for now, life goes on.

Love, The Jones'

Monday, November 15, 2004 10:59 AM CST

Hi everyone!

It is so hard to believe, but today is Benjamin's last day of chemo for this round. Those weeks are flying by faster and faster! Thankfully, this month has been so much easier on him than the first month was. He has only had one day of the belly pain and yuckies - last month he had three good days and then two full days of those sick feelings. Much much better!! The only real side effects he had this time were fatigue and low appetite. His counts dropped pretty significantly, too, but hopefully after today they will be on the way back up again. He keeps busy and spends his time playing with his brother, playing video games, playing with his wrestler guys and watching his cartoons. Even when he is falling down exhausted we have a hard time getting him to really rest. I think if he would take a nap each day it would help him so much, but the best we can get is for him to at least lay down and try to take it easy. He's also getting to spend extra days with his best buddy, Mrs. Brinda, and that has made him really happy. They play games together as they go over his reading and spelling work and that has been really good for him. He got his report card last week, and it was a really good grade card! He earned all A's and one B!!! He really tries so hard, and there are a lot of days that he can hardly keep his eyes open while Mrs. Boucher is here to work with him.

This week is a huge week for him, for all of us. Friday is his first MRI since we had this amazing chance to try a new chemo and be discharged from hospice. Benjamin has been doing so well, and we haven't seen any signs of declining that it seems unimaginable that at the very least this chemo can't be holding things stable. To be honest, though, we never saw any signs that relapse was coming so it is impossible for us not to be really nervous about this week's scan and the fear of being plunged back in that horrific nightmare of how we lived from May until Sept. when we had no options and we were just praying for time. The stress and tension levels are definitely rising for Brian and for me, but we're trying to keep things running the same as usual for Benjamin and Zachary. Neither of us are sleeping well or feeling very relaxed, though. Benjamin doesn't seem to be worried or stressed about things in his life at this point, so hopefully on Friday we'll be able to tell him only good things which will help him feel at ease as we go further with this new chemo. The biggest concerns in his life right now are what to ask Santa for this Christmas. The Toys R Us catalog is hauled out daily and poured over by both of the boys. Zachary understands a lot more about this Sandles Claus guy (as he calls Santa), and anytime he thinks about a toy he likes he tells us that he will ask Sandles Claus.

That is about all that is going on here. We've been keeping things pretty quiet and close to home around here as we spend time together and enjoy our boys. Thank goodness both of the boys are such homebodies!! I will update as soon as we know something on Friday. Please say a prayer that we hear only good things that day and that this medicine is working for Benjamin!! Thank you so much!

Love, The Jones'

Monday, November 1, 2004 7:38 PM CST

Hi everyone!

I'm sorry that this will have to be a very short update, but we've been having a terrible time staying online - I've been kicked offline more times than I can count now.

Benjamin started back on chemo last Tues., and he is now at the end of his 7th day - all good ones so far. We're so hopeful that he just needed that first month to get adjusted and that maybe this is a new trend! He still tires out very easily, but that is so much easier for him to deal with as a side effect rather than the sick feelings and the belly pains. He also was feeling really good for trick-or-treating! We didn't stay out too long - he got pretty tired after about 40 minutes, but he more than made up for it the next day at his clinic appointment (the towns all around here trick-or-treat before Halloween - I know, it's goofy!!) Anyway, the staff at the clinic had set up trick-or-treat stations all through the clinic, and Benjamin had more loot in 5 minutes there than he did in 40 minutes the night before - haha! It was such a wonderful idea for them to do that because so many kids on treatment have to miss out on so many fun things with the holidays.

Anyway, Benjamin is doing really well and is charging straight ahead through this second cycle of chemo. He still has weekly clinic appointments, and even though his counts dropped quite a bit from last week, they're still in a good range. I'll try to update more sometime this week or weekend, and hopefully we'll have more luck. I've already lost two updates so maybe the third time will be the charm. Thank you for keeping Benjamin in your prayers! If you could, please remember our friend Kody in your prayers as well as he recovers from brain surgery. His web address is www.caringbridge.org/fl/kodysstory
Thank you so much!!

Love, The Jones'

Saturday, October 23, 2004 1:28 PM CDT

Hi everyone!

We'd first like to ask for prayers for a really funny and sweet boy we met through Caringbridge - his name is Kody. He lives in FL, and on Monday he will be having brain surgery. His family is awesome and his parents regularly check in on so many kids, and they were so supportive to our family this past summer with all that Benjamin went through. His web address is www.caringbridge.org/fl/kodysstory if you'd like to stop by to visit Kody and cheer him up.

Monday was Benjamin's last day on chemo for this round, and since then he has enjoyed a pretty good week with a lot less medication to have to take. He still has his bouts with feeling icky, and has had several brief headaches last night and this morning, but overall he has been doing alright. His counts dropped some this week we found out after his lab work at the Close to Home Lab was done, but he's now done with lab work there every Tues. He really liked Sue, the nurse who did his lab work, but he didn't like the early hour I dragged him out to get it done. We got there at opening time (8:00am) each time, so that we could get all this done before Brian left for work and he could keep Zachary at home. We also figured that going that early got us in and out of there before the Pediatrician's office across the hall was open for business. This way we could avoid running into all kinds of "sickos" as Benjamin puts it. Now he only needs blood work once a week, and that can all be done every Friday while at Children's for his weekly appointments. I tried to tell him that this would be what time he'd have to be up every day if he were back to school, so he decided he was even more appreciative of the homeschooling and time to sleep in.

Yesterday the boys enjoyed a visit with Mrs. Brinda, and she brought along her dog, Bailey, and the kids loved that!! Benjamin loves to take Bailey for walks outside and he's always impressed by the tricks that Bailey can perform. He can sit, lay down, roll over and shake hands, and Benjamin loves to feed him treats. The Brinda's are coming over for lunch tomorrow too, so we're looking forward to their company.

Yesterday was also Clinic Day, and everything went well there. Benjamin's weight was down just a little bit, but the day before was an off and on icky one, so we weren't too surprised. We're not sure yet if his counts came back up again - we should hear on Monday. Unfortunately this visit required a blood draw from the arm rather than a little needle stick in the finger since more tests were necessary, but Benjamin handled that pretty well. He had himself all set for a quick finger stick, but it was all over and done with quickly, and he and Rusty chatted about video games and the new supply of bandaids that should be in for next week's visit - more Spider Man and SpongeBob bandaids are on order!! Benjamin hasn't had any further problems with his eyes over the last week so there wasn't much new to report during his physical. We had a little visit with Suzanne and that was that. Our big surprise came when Kris, one of Benjamin's friends who works in the clinic came out with a special gift bag that had been sent to Benjamin from a new little friend - a sweet little girl named Emma Joy. She and her Mommy had heard about Benjamin's page from Kris, and they made a beautiful puppy dog blanket for him - it is so soft and cuddly - and they sent along a really cool race car. We really appreciate such a thoughtful gift from a such a sweet little girl. Her web address is www.caringbridge.org/oh/emmajoy if you'd like to stop by and say hi to her as well. She's a real little cutie!!

Benjamin starts his second round of chemo on Tuesday, and hopefully he won't have so tough a time adjusting to it. He'd stretched it out to 5 good days to 1 icky day by his last week of chemo this last time, so hopefully he won't be back to square one next week. He's feeling pretty well, but exhaustion seems to be the main side effect - it just overwhelms him at times. As far as chemo goes, though, that is way better than most side effects can be. We do have a date for his next MRI - it will be Nov. 19th, so we're so hopeful that we have many extra blessings to be thankful for come Thanksgiving Day. We're already so thankful to have him with us for the upcoming holidays - that is beyond what we ever expected! We just hope to hear that this new chemo has caused the tumors to shrink or at least to keep things stable. Just hearing that things have remained stable would be thrilling!! We keep praying for the best news of all - for the tumors to shrink.

This update is a pretty short one, but not having alot going on is a good change. Thank you for all of the e-mails and messages, and thank you for keeping Benjamin and his friends in your prayers!!

Love, The Jones'

Saturday, October 16, 2004 2:54 PM CDT

Hi everyone!

I'm sorry we haven't updated for a little while - this is my third attempt at updating, and hopefully I will be able to get it posted before I'm kicked offline again.

We'd first like to thank everyone for continuing to stop by to check on Benjamin - he hit the 100,000 visitors mark last weekend!! Thank you also for the wonderful e-mails and guestbook messages - they have really been a boost for us all.

Benjamin is doing pretty well with this treatment. He's fallen into a pattern of 3 good days followed by 2 icky days, but thankfully the icky days aren't as bad as every day was for Benjamin during his first chemo treatments back in 2002 and early 2003. The major side effect is definitely fatigue. Benjamin keeps himself busy playing with his brother, playing video games, coloring and playing with his wrestler guys, but it doesn't take much for him to become exhausted. Usually he just lays down on the couch for awhile until the feeling passes and then he goes back to playing. The icky days are spent pretty much the same way, but they include bouts with belly pain, upset belly and some false alarms with his "puke box" (as he calls it). Being on the scheduled doses of anti-nausea medicine has kept those instances to false alarms, but the nauseated feeling comes much more often on the 2 icky days. Benjamin has alot of medication to be taken throughout the day, but he is doing really well with it and he doesn't complain.

We had a scare with Benjamin this past weekend. Over the last few months Benjamin would occasionally look at us out of his peripheral vision because he said that when he looked at things straight on things looked like they were shaking. This only happened every so often and never lasted for long. This past Sunday, however, Benjamin looked at everything out of the corners of his eyes all day. We called the Hem/Onc doctor on call who was very nice and reassuring and explained that this isn't uncommon and not to worry, and since there really wasn't much that we could do it would be alright to wait until Monday for an opthomology appointment unless Benjamin became really uncomfortable. Later on that night, though, Benjamin started complaining of a headache, and when we helped him onto the couch he looked up at us in a panic because his eyes were darting back and forth rapidly and he couldn't make them stop. He closed his eyes for a few minutes, but when he opened them back up again his eyes were still jiggling. This was really upsetting to him, and Brian and I were kind of scared because we'd never seen anything like that happen. After some discussions with the doctor on call - who also called Benjamin's doctor - they decided that Benjamin should come in for a CT scan to check if his shunt was working properly (the shunt in his head drains excess fluid down to his abdomen). Since it was getting late when he went in, Brian went to the hospital and Zachary (who was sleeping) and I waited at home. Brian called at about midnight with the news that the shunt looked fine, but the ER doctor had come in with the news that he thought one of the tumors had grown. We were all totally deflated hearing this, especially Benjamin. This call was worse than the call Brian made back in 2002 when Benjamin was first diagnosed - I was at home again with a newborn Zachary and he called to say "they found a small brain tumor..." At least back then we had ALL of the treatment options before us, now we're using his one option. Even though this past summer was so up and down, I don't think it really occurred to any of us that this chemo might not work - we've just all moved ahead believing in it. Brian asked the ER doctor what the new dimensions of the tumor were, and he left to check on that. When he came back in he told Brian that before they had overlay the two scans (the Sept. 20, 2004 MRI with that night's CT scan) and on the CT the tumor appeared to have grown. According to the dimensions, though, he said that it measured smaller on the CT scan - very confusing, I know. Then he told Brian that we would have to speak with oncology in the morning. It took until nearly 2:30am to get Benjamin to bed because he was really upset and believing that the chemo wasn't working. He is much more alert and understanding now when his situation is being discussed, and this whole night was really frightening to him. We told him that it was too early to tell yet how things are working and that we will keep taking this one step at a time. Much of the sting out of Sunday night's news was taken away the next morning when Benjamin's nurse Suzanne called. She told us that there really is no way to accurately compare an MRI and a CT scan, and we'll just keep going ahead with chemo and have an MRI after the second cycle as planned. Benjamin felt a lot better after hearing that, but we can tell that for him, the same as for us, the words from the ER doctor on Sunday night are still circling around in his mind.

We went in for an opthomolgy appointment on Thurs. and his doctor said there is nothing wrong with his eyes structurally. The reason behind the eye jiggling deals with all that is going on with him related to the tumor. She said that something occurred on Sunday night, some type of change, that caused the eye movements to start. However, she said that whatever the change was, it didn't necessarily have to be a change for the worse. It could just as easily be a change in a good direction, and she thought that it might just be a one time occurence. We are pretty much where we stood before the ER visit - we don't know yet what effect this new chemo is having, but we're keeping hopeful and optimistic.

Benjamin had his weekly clinic appointment yesterday, and everything is looking good so far. His counts even came up from earlier in the week. His counts have remained in a good area so far, but we're still keeping ourselves pretty close to home to avoid illnesses. We're unable to get flu shots, like everyone else, because of the shortage of the vaccine, and Benjamin can't have the flu shot because he is in treatment right now. Zachary is the only one of us who was able to get a shot (his pediatrician's office allowed it because he is the sibling of an ill child), but believe me he wasn't thrilled to be the only "lucky" one. The nurse who gave him the shot counted to three before giving him his shot, and all I heard the whole way home from the doctor's office was "I don't like that one, two, fwee foo shot" meaning - "I don't like that one, two, three flu shot!" We're all making sure to keep our cell phones handy and stick around close to home because we're back in the days of when things change in no time. One minute everything is fine, half an hour later there can be a fever and a trip in to Children's is necessary. Overall, though, we really can't complain - Benjamin is really doing pretty well, and for that we're thankful!! This is alot harder on him emotionally than any of us realized it would be. He's a little bit quieter and he worries about things, but we're trying to keep him focused on the good things that are going on his life.

That brings us to Halloween. We're just hoping and praying that Trick-or-Treat night will fall on one of Benjamin's "good days." If not, then we'll go out as planned, but we just won't go too far away. When we first moved here there weren't too many other houses around us, but over the past 7 months the neighborhood has filled in quite a bit, and he can get plenty of trick-or-treating time in now. Zachary has decided to wear Benjamin's old Buzz Lightyear costume, and he looks so cute in it! Boy, does it bring back memories of Benjamin at that age. We have more than one Buzz costume, too, because for quite a few years Buzz was the king around here - haha! Benjamin is going to be the blue Power Ranger, and he wants to wear his costume already. He's already started his countdown until Trick-or-Treat night.

Looking forward to Halloween and also to a visit from my parents this weekend has kept him happy. Last weekend we got to see Uncle Chris, Aunt Adria and little cousin Ashton, and it was such a fun visit. The three boys were so cute playing together!

That is about all that is new here with us. Thank you so much for stopping by to check on Benjamin and for keeping him in your prayers!!

Love, The Jones'

Tuesday, October 5, 2004 5:05 PM CDT

Hi everyone!

We want to send out a very special thank you to the teachers and staff of Tussing Elementary for dedicating September's Dress Down Day to Benjamin and for your very generous gift to our family. It is very much appreciated and will be put to good use!! The encouragement and support that our family has received from everyone there has been so amazing - everyone at Tussing has always gone above and beyond for our family and we truly appreciate it.

We're sorry for the delay in updating - our computer has been giving us trouble, but we're back up and running now. Benjamin had a really tough time getting over his spinal tap - he only just started to feel completely back to himself on Friday in the late afternoon (a week and a day after the procedure was performed). Unfortunately, once he was feeling better from that, he got pretty sick Friday night and into Sat. morning. We're not really sure if he caught a little bug or if he was adjusting to the chemo, but he was pretty miserable. We had to call the doctor on call (Dr. Jason) on Sat. morning because Benjamin was unable to keep anything down - including the oral chemo. Dr. Jason called in another anti-emetic and put Benjamin on scheduled doses of both medicines to control the nausea and vomiting, and by Sat. afternoon that had all stopped. We were very lucky that my Mom was still here from her visit last week because we didn't know if we were going to have to make a run in to the ER. Benjamin was able to stay on schedule with all of his chemo pills and slowly, but surely he started eating and drinking again. He still doesn't have much of an appetite, but that has steadily improved and he is drinking very well to stay hydrated. Fatigue seems to be the biggest side effect that Benjamin is experiencing, but he'd take that any day compared to how sick he felt this past weekend. The scheduled doses of anti-emetics has worked wonderfully and Benjamin hasn't been sick at all since that last time on Sat. afternoon!

The original plan had been for Benjamin to have once a week clinic visits - on Fridays - and for Homecare to come once a week for his other scheduled lab work. We had hoped that this would work out, but knew that insurance might not go for it since he is able to be out and about. We found out Monday morning that that is the case - he's really not homebound, and we're thankful that he doing so well that he wouldn't be considered "homebound"!!! Instead of going back in to the clinic, though, we're set up to scoot over to the Children's Hospital Close-to-Home Lab every Tues. for blood work. Today was our first day, and everything went really well. We went right as soon as they opened up, and since that is so early Benjamin and I are able to be over and back while Brian stays home with the baby, and then Brian is able to be off to work on time. We're very lucky that the lab is located about 10 minutes from our house so that is really convenient. During the second month of chemo we only have once a month clinic appointments, but we will keep up the weekly visits to the Close-to-Home Lab. We were really happy to hear that his counts are very good, too!!

Benjamin is still working with his tutor every afternoon, and Mrs. Boucher said that he is working very hard even though she can tell that he's tired. Now that he is past the side effects from the spinal tap things are so much better for him. He spent a few afternoons doing his schoolwork while lying flat on his air mattress in the living room with Mrs. Boucher sitting on the floor next to him. Not the easiest way to work, but he never complained. Even the whole time he was so sick this past weekend, he never once complained. He doesn't even want to discuss how he feels about being back on chemo and how sick it made him feel - he just says "I'm doing it!!" Being on chemo this time around seems harder on him emotionally than the first time. Every once and a while he lets his feelings out, and he is angry that he is sick. He doesn't understand why he has to be sick. He has been so irritated with his brother lately, some of it is exhaustion, but some of it is anger. He says that he wants to be "well and happy like Zachie is." We've going to find out about having him meet with the child psych. who worked with him during treatment to help him over anxiety issues. When he first went through treatment Benjamin was only five years old and he truly believed that everyone gets brain tumors and goes through the same things he did. It made sense - everyone he saw for a year looked and felt the same way he did - little kids with no hair, kids having surgery, chemo and radiation, kids with tubies, etc... Now he's older and he knows that this doesn't happen to everybody, and he knows just how unfair this all is. The first time around he believed with absolute certainty that he would go through all the treatment and then he would be fine, now he knows that that doesn't always happen, too. For the most part he's doing really well, but there's a sadness to him, too. Things really improved for him before when he met with Dr. Tammy, and we're really hopeful for more of the same.

We don't have alot planned for the rest of this week - we're keeping things pretty quiet as Benjamin gets adjusted to chemo. Benjamin is looking forward to a visit with Mrs. Brinda tomorrow so they can catch up and visit. On Thurs. Benjamin's Hospice nurse, Tina, is stopping by on her way home from work since we didn't get to see her to say good-bye and thank you since she was out of town when he was discharged from Hospice Care. Then this weekend we're all looking forward to visiting with Uncle Chris, Aunt Adria and cousin Ashton. We really appreciate the e-mails and guestbook messages - even moreso now since Benjamin isn't able to get out as much. It has really cheered him up to know that people are still thinking about him and rooting for him! Thank you for keeping him in your prayers!

Love, The Jones'

Tuesday, September 28, 2004 10:17 AM CDT

Hi everyone!

If you havn't seen Benjamin's page for a little bit, you might want to check back at the entry just before this one -you'll LOVE it!!

This morning was Day 1 of chemo, and we're very happy to say that everything is going along so far, so good. Benjamin was up early to take some medicine to keep him from feeling nauseated, and then at 8:00am he took his two chemo pills. We were a little worried about how they would go down, and thought we might have to crush them and hide them in some kind of food. Benjamin took a look at the pills and said that he thought he could swallow them, and he was able to with no problems. He was so thrilled with how much easier this was than before when he was on chemo. No tubies, no admissions for chemo - now we just have to keep praying that the side effects will be mild!! I spoke with his nurse, Suzanne, this morning and she said that he might even notice feeling nauseated after the very first dose, and since he didn't that is a good sign. Benjamin went back to sleep shortly after taking his pills and he's still sleeping now. He's been sleeping quite a bit the past few days since he's still having some troubles getting past that spinal tap. Last night he was able to sit propped up while watching TV for the longest time yet, so hopefully this is getting better. Both of the boys are really getting "cabin fever" from being cooped up since the spinal tap last Thursday. They're starting to drive each other crazy, and they're bringing me right along with them- haha! We know that this is just temporary, though, and Benjamin's body should be replenishing the fluid that was lost from the tap before long. The most common side effect of this chemo is fatigue so we're trying to encourage him to just sleep when he feels like it and not to fight it. He just now woke up from a two hour nap and he says that he feels good after sleeping. He has his first clinic appointment this Friday to check his counts and have a physical. Next week we will get started with Homecare coming once a week for blood draws and then Fridays will be in the clinic. Benjamin will be on this chemo for 21 days and then 7 days of rest. For the first time last night Benjamin talked about being afraid that maybe this won't work, but like before, we talked about just focusing on feeling good, having fun and leaving all these worries and everything that is out of our hands out of the picture. I think if he was able to be up and around and playing that he might not be so worried, but since he still gets the headaches and nausea (from the spinal tap) at times when he gets up, and he's spending the majority of his day lying down, he doesn't have anything else to do but think and worry. He's always been our little worrier!! Brian picked up a new game from Blockbuster last night, so that might do the trick to take his mind off of things. He's just pretty bored right now.

Not much more is new here. It was a very quiet weekend, and we're looking at a little bit more of the same for the time being. We're enjoying all of the e-mails and guestbook messages!! Thank you so much for thinking of Benjamin! We'll update again soon to let you know how the new chemo is going.

Happy Birthday Aunt Kim!!

Love, The Jones Family

Tuesday, September 21, 2004 11:01 AM CDT

Hi everyone!

**Update Sat. morning**

Hi again! I just wanted to add in some of the latest news from Benjamin's two days of testing. All of the results for everything are in, and Benjamin is in great shape going into chemo!! His vision is good, his counts are strong, his heart is perfect, and the best results of all - Benjamin's spinal fluid is CLEAR - no cancer cells floating around in there!! Unfortunately Benjamin is having a bit of a tough time following the spinal tap - as long as he remains lying flat he is fine, but when he sits up or stands up he starts having headaches and vomiting. The poor little guy had a horrible morning yesterday - he'd already been sick 5 times before we made it into the hospital. Thank goodness Brian was able to move around some meetings and come in with us. Every time we got him up and tried to dress him, move him, get in the car,etc...it would start up again. Benjamin has only had a spinal tap one other time, but it was done at the same time as his brain surgery to remove his first tumor back in May 2002. After surgery he had numerous episodes of headaches and vomiting and we didn't know that some of it could be related to the spinal tap - we just thought it was all part of the recovery from what he had just been through. We wanted to have him seen back at the clinic, though, and we knew his test yesterday was one that is done while lying down (EKG - on his heart), so we hoped that he would be able to push through. We just made it to the Cardiology Diagnostic Dept. when he felt sick again. We were very lucky to meet a wonderful nurse in the waiting room who had been locked out of her office. Right away she helped us to make Benjamin comfortable in the chairs so he could lie down, she brought him cool, wet washcloths, ice chips and a warm blanket. We got to talking when she asked about Benjamin's situation, and we were all surprised to find out that she just happens to be one of two of Benjamin's new Homecare nurses! Her name is Dana, and Benjamin already feels comfortable with her since right away she started taking such great care of him! During his test Benjamin was able to lie down for nearly 45 minutes, so he was feeling much better throughout that whole time. He said he thought it was all over now, but we found out that this may last for a few days. By the time we made it back up to the Hem/Onc Clinic Benjamin wasn't feeling so great again, and they let him go lie down in the back. The poor little guy got sick again, but his good friend Chris got him all set up again with an ice pack for his head, a sprite and a new "box" as Benjamin calls the emesis basins. We are really grateful for all of the care he received yesterday because he really wasn't feeling too perky. Brian and I signed all the paperwork necessary to get him enrolled in this new clinical study, and his chemo should arrive at Children's from the NIH on Monday. We are set to start chemo Tuesday morning here at home. He has to take two pills in the morning and two pills in the evening. It is amazing to think that he can even start chemo and that we can do this at home. We're so hopeful that this will give Benjamin the best of both worlds - he will finally feel like he has a weapon to fight this with, but at the same time his life will stay pretty much the same - no tubies, chemo at home rather than being admitted, he shouldn't lose his hair, and hopefully the side effects should be milder. He should still be able to see friends and attend school as he's up to it. He's going to be fighting, but he won't have the constant reminders that he's sick like he did the first time around. It all seems so surreal, Brian will pick up the chemo on his way home from work on Monday (not your typical "stop off at the store on your way home")and Benjamin can jump right in the next day. The final part of our day at Children's yesterday was stopping off at the Hospice Dept. to officially sign the paperwork to discharge him from hospice care. We never imagined back in May that we would take him back off hospice - it is still so stunning to us. The hospice team was so wonderful to our whole family and we are really grateful for their care of Benjamin! Now we've been invited to just stop back to see them for visits and updates on how Benjamin is doing.

We never could have dreamed when this week began that we'd be standing here at this point not even a whole week later. For so long we didn't dare to look ahead or plan anything further ahead than the weekend. We understand that we still don't even know yet if this will help or work, but just having some hope again has changed everything. We're at least looking forward now to Halloween and Christmas! We can't wait to pick out costumes with BOTH of the boys and take them out trick-or-treating. Benjamin has always been my little helper with decorating - inside and outside the house - for both holidays, and I can't wait for his "help" again this year. He always takes everything out and starts spreading everything everywhere, jumping ahead of the game and getting lights tangled up - I LOVE IT!!! We're still taking things a little bit at a time, but to look ahead a couple months now is so wonderful!!

Thank you all so much for all the prayers - this week has been one filled with good news and good test results all over the place! We really appreciate all the prayers and all of the guestbook messages - it makes this all even more special to be able to share this with everyone who has been supporting and encouraging all of us through the roughest of times. We hope it's a great weekend for you. It will be a quiet one here since Benjamin has to stay lying down, but he's found out that he can adapt for almost anything - his friend, Rochelle, was over last night and they still managed to play Gameboys, video games, watch shows, eat, drink and play Monopoly Jr. together. Hopefully this little side effect will pass quickly!! Thank you all again, and sorry this was such a long update- I wrote a lot more than I thought I would.***

**Update Wed. afternoon**

Thank you so much for all of the awesome e-mails and guestbook messages!! The support from our family and friends and all of the wonderful guestbook messages from both old and new friends has carried us through a really hard summer, and we're overjoyed to be able to share these good times with you all now. We have loved reading all the notes from everyone, and Benjamin is overwhelmed by how many people have been thinking of him and praying for him. We are so touched by all the responses from everyone that are filled with joy and excitement for this second chance that Benjamin has been blessed with.

I just wanted to let you know what we know so far. Benjamin is going in to Children's Hospital tomorrow morning for a spinal tap to check for any suspicious cells in the spinal fluid. He is on the surgery schedule for 10:00am and he will be completely sedated for the procedure. After he's come out from that he has a clinic appointment for a blood draw, but he will still have his IV in from the morning so he won't have another needle poke. After his MRI on Monday we kept the IV in just in case he needed a blood draw up in the clinic. His nurse Suzanne said that we didn't have to do any blood work that day, so he was helping her take all the tape off his hand and wrist that was holding his IV in place. There was a lot of tape there,and they pulled and tugged for a few minutes. When they finally got to the point when he was ready for the gauze pad to place over the injection spot, as Suzanne picked up the gauze pad Benjamin decided to give the tape one more pull and ended up pulling out his own IV - and sending blood squirting everywhere. He was more amazed by all of this than he was about his good news from the scans, and that has been the news that he shares with everyone when they ask how his scan went - "I pulled out my own IV and blood shot out all over!!!" Suzanne and I were joking this morning that after he's done in the clinic tomorrow morning he can just leave the IV in until he gets home and just take it out on his own - haha! Anyway, back to his schedule - His next stop is at the eye clinic for an eye exam. On Friday morning we go back for an EKG to check on his heart (just as a baseline before starting treatment), and then we are back up to the Hem/Onc clinic for a physical. All of these tests have to be done the week before starting chemo, and it looks like he should be actually starting chemo early to middle of next week!! It is going to be a busy next couple of days, but Benjamin is excited and ready to go full-steam ahead. All along he has wished that he could try something to make this all go away, but we just didn't have any options. He is so happy that now he has something to fight with. For the first month of treatment he will need twice weekly blood draws - one will be done at home by the Homecare nurse, and the second one will be done in the clinic and he'll have a physical afterwards. Once Benjamin gets to the second month of treatment he will only need blood draws once a week, and those will all be done at home by Homecare nurses. Then he will need to be seen in the clinic once a month for physicals. We're so grateful to have this option of Homecare coming once a week because clinic visits are sometimes long days, especially if you're not really feeling well. We're really looking forward to seeing our friends back in the clinic though, it feels like ages since we've seen them and they have always given wonderful care to Benjamin!! I'll update more as we go along and keep you posted on how the testing is going. Thank you all for keeping Benjamin in your hearts and in your prayers. ****

I'm so sorry for the delay in updating, but I promise you that it will have been worth the wait!! Yesterday was a day full of twists and turns and surprises, and things are still settling in, and we are so thrilled to finally be able to share with you all some good news about Benjamin's condition for the first time since May 5th.

I won't keep you in suspense, we are headed in a whole new direction. Benjamin had MRI's of both the brain and spine yesterday morning. By the afternoon we had learned that the two brain tumors had grown, but we didn't know by how much. We also were shocked to find out that a third spot was also detected, but is still very tiny. We went home feeling pretty down even though we knew that with no treatment, of course, the tumors would probably have grown and spread. Because of how well Benjamin has been doing we had hoped that maybe what had appeared on the scans in May had just been scarring from radiation or shadows or anything that would let this not be relapse. Deep down we knew better, but we hoped for the best. At least we had hoped that things might have remained stable since he's really not shown any decline. We just decided to put the early results all behind us and pick our lives back up where we'd left off the day before. Then later in the afternoon yesterday we got the call that changed everything. Suzanne (Benjamin's nurse practitioner) called to tell us that Dr. Olshefski had been down to look at the scans himself, and while there is now a third, tiny spot of cancer in the brain, the two tumors that were found in May have only grown slightly!! And this is while having no treatment!! The most incredible news of all is that what had been thought to be metastatic spread to the spine is no longer believed to be cancer!!! He had two spots that lit up on the scan back in May, and the two spots are still enhanced on the most recent scans, but they hadn't changed one bit. Upon further review yesterday they are no longer convinced that Benjamin has any tumors in his spine!!! The area that lit up in the chest region near his heart is believed to be vascular, and the area near Benjamin's tailbone that still lights up on the scans is not consistent with being a tumor or metastatic cancer! They can't say for sure what it is, we had asked if it could possibly be radiation scarring or something like that, and we just don't know, but as long as it is NOT cancer than we'll take that! Because of the fact that Benjamin has had so little change in the tumors in his brain, and miraculously due to a brand new chemo protocol that just opened up which Benjamin is elegible for, Benjamin WILL be starting chemo again sometime in the next few weeks. This new chemo option was not available back in May, but thank God for the fact that something new has come out - Benjamin has another chance. This new drug has been tested in adult patients with the worst types of brain tumors and has been shown to have had some success. The hope is that since children usually respond better to treatment than adults do, and since the types of brain tumors being studied in this clinical trial are not the worst types of brain tumors in children, that maybe this will have some effect on shrinking the tumors. This is a Phase 2 clinical study which means that we don't know for sure if this will have any effect or not, but it is a chance to try. It is an oral chemo that Benjamin can take at home, it shouldn't be too hard on his counts (so he should still be able to go to school as long as he's feeling up to it), and he doesn't have to have a central line put it (no more tubies!!). Because of not having a central line we don't have to worry as much about infections. We will still have to watch him closely and bring him in to Children's if has a fever, but the biggest worry when kids on chemo have fevers is infection in the line, so that is one worry we can cross off the list. The side effects that are usually the most uncomfortable are not as common in this chemo and he probably won't lose his hair again (even though that wasn't a big concern for any of us, we did find that out). We don't know if this will work or if it will do anything at all, but it is hope again when just yesterday there wasn't any. The way we see it is that everything that is standard in medicine today had to start in a clinical trial at some time, so maybe this will be the drug that does the trick. At any rate, Benjamin is ready and willing to take this chemo and he is back in the game!!

It is alot to take in isn't it? What makes this all even more of a miracle is that yesterday's MRI almost didn't happen. Benjamin was pretty upset Sunday night and into Monday morning - he didn't want to have another scan. He told us that he didn't want to do this, he didn't want to know what was going on and that he feels fine as things are now. Brian and I really struggled with the decision to go ahead with the MRI because we felt like this MRI was just to give the two of us some answers about what was happening and how far things might have progressed. We thought maybe that this wasn't fair to make him have the test if it was only for our answers and was just serving to cause him anxiety at a time when he didn't need any more. Benjamin has been feeling so good and much more hope- filled that we decided that we could live with not knowing how much things had progressed if it would help Benjamin feel better. I had first tried to reach Suzanne and had left a message. We hadn't heard back and it was getting closer to the time for the MRI, so I called over to the MRI department and was on hold with them to cancel the MRI when Suzanne "beeped" in (thank God for call waiting!!). We talked about how Brian and I didn't want to put him through any chemo that was just going to make him feel awful and didn't have any kind of realistic chance of changing anything. She told us more about this new drug and the trial starting, and she said that this might help him without making him so miserably sick. When I got off the phone I told Benjamin that Suzanne had said that there was a new chemo that just came out that he could try, and Benjamin popped up in bed and said "I'm doing it!!" We told him that if he was going to try this chemo we needed to have an MRI first to see where things are at, and he jumped up out of bed and said "I'm going to brush my teeth and let's go!!" We started flying around the house to get ready - thank goodness my family was down here for a visit and could keep Zachary!! - and off we went. To think that we were seconds away from calling the whole thing off is amazing to us.

Now this week the wheels are turning to get Benjamin ready to start this new protocol. He has to have an eye exam, an EKG, and we're waiting to get on the surgery schedule for an LP (spinal tap) to test the spinal fluid before we can begin. We also have to wean him off his anti-seizure medication and start him on a new one because he can't be on the Tegretol(anti-seizure med) and the chemo since the two are not compatible. He's also being DISCHARGED from hospice this week and being switched over to Homecare. A nurse will come out to the house each week to do his blood draws and check him out instead of us going in for weekly clinic appointments. We will need to go in once a month for check-ups, though. It is amazing to think that we will be signing the paper work to take him off hospice!! We can't say enough great things about the outstanding care and support we have received these past few months from the hospice nurses - Tina Andrews and Deborah Schenk - and from the whole hospice support team. They have been so great to Benjamin and to our family and we will really miss them. They are wonderful people who came into all of our lives at the most horrific of times. We thank them so much for doing all that they've done!

Like I said, this turn of events is all still sinking in with us. It is incredible to have gone from no hope to having hope again, even though we know that we still have to be realistic and understand that he is nowhere near out of the woods yet. This is at least another chance to try to beat this disease, and it feels like the miracle we've been praying for. We also want to say how much we appreciate the prayers and support of everyone out there - we've heard from so many of you that have told us that you're praying for a miracle as well. Thank you so much for praying so hard for Benjamin - it has been such a comfort to us over the past four and half heart-breaking months. Please keep up those prayers for Benjamin because he's getting ready to start the fight all over again. Thank you so much for all of the love and encouragement!! Our family, friends, and all of you who check in on him, even though you might never have met him, have really helped to pull us through these up and down last few months. It is an honor to our family that you have taken Benjamin into your hearts and prayed so hard for his recovery. You'll never know how much that means to us.

Last night was an Adventures for Wish Kids party at Magic Mountain so you'd better believe that we were there and ready to celebrate!! Benjamin even went without sedation for the MRI yesterday so that he could go to the party - when he's motivated to do something I think he even surprises himself sometimes. It was a wonderful night out with the boys and a chance to just enjoy ourselves after the past few stress-filled days leading up to the MRI. Thank you so much to Adventures for Wish Kids for a great night out!!

I'll update more this week as we learn more details about what is to come in the next few weeks. Thank you so much for all of your love and support!!

Love, The Jones Family

Friday, September 17, 2004 11:18 AM CDT

Hi everyone!

I'm a little bit behind on my updating, but I'm trying to get all caught up today. Things have been going along really well here, and Benjamin is still his same little old self. He's been going to school every day still after some time off last week. Last week he had a cough all week, but no other symptoms, and we were kind of keeping an eye on him since his nurse told us that some of the kids who have been on chemo often develop pneumocystis (sp?) or pneumonia. We didn't want to take a chance on his picking up something else at school while we were trying to figure out what was up with the cough. It finally turned into just a cold which was a nice change of pace from worrying about the big stuff. This week he has been back to school each day, except for Tues. which was a play-day over at our friends Tina, Travis and Trevor's house. The boys have a great time playing with the kids, and it was a beautiful day for being outside. They drove around in the battery operated jeeps again, and we also went for a little walk in the woods behind their house to look for deer tracks. I had to laugh because Travis and Trevor were finding leaves and tracks and other beautiful things out in nature, and my kids were sure they were finding all kinds of gruesome things. Benjamin looked down a little hole that we thought might be the home of a tiny snake, and he was sure that he saw a brain in there. Then a little while later Zachary was sure that saw a human hand in the leaves. Leave it to my two - how would you like to take a nature walk with them?! It was a really fun afternoon and we were all sorry when the time ended all too soon.

Benjamin had been invited to go on a fishing trip with some kids from several of the schools in the district and his APE teacher from last year. It sounded like a really great day was planned for the kids - fishing, a hayride, and a nice lunch - unfortunately it started raining at around midnight last night and it hasn't stopped. Benjamin was pretty disappointed that he and his Daddy weren't going to be able to go on the trip today, but he's still happy that Brian has the day off today, and in a few minutes were going to head over to school for gym class instead.

Tomorrow Benjamin is going to his good friend Rochelle's birthday party, and it is going to be a putt-putt party, so he's really excited to play with her and to hit the ball around. We're hoping this rain stops and that it will turn out to be a pretty day for her party!!

We don't have alot planned for the weekend. My family is coming down for a visit, and they are going to stay through to watch Zachary for us while we take Benjamin in for his MRI on Mon. We really appreciate this because it isn't easy anymore to keep the little guy occupied for the length of time it takes for a brain and spinal MRI. We're trying not to get too caught up in the anxiety over the upcoming scan, but we're praying so hard to hear something wonderful. We know that it isn't very likely, though, and that we have to be realistic. The way Brian and I are looking at this is that we've already been told the worst news any parent can hear (next to actually losing their child), and from where we're standing the news can only get better. At the very least we know that this is much slower growing than any of us thought at the beginning, and that is some consolation. The whole thing just seems especially cruel because this summer he has felt so good and he has been able to do things that he hasn't done in more than two years. He can run around the house and hurdle a pile of toys without falling over them, and he's been able to play hopscotch outside on the sidewalk with his teacher while they practice his math facts. He tried to play hopscotch while he was in PT at the hospital, but he just didn't have the balance or the strength to do it. Kathy (his physical therapist) always had to hold Benjamin around the waist to keep him from falling over. I know that these two steps sound little, but in terms of how Benjamin has been over the past few years these are huge steps for him, and he knows it. He has said that rather then feeling himself getting more tired, weaker and not able to do as many things as he used to do (which was how we described for him how the progression of things might feel when he asked us), he feels stronger, better able to balance and able to do more things rather than less. He doesn't understand any of this either and he's very confused by it all. He asked if this MRI will tell us that everything is all gone and that he's well again, and I wished with all my heart that I could tell him yes, but all we can tell him still is that we really don't know anything about what is happening, but we're going to use the "test" of how he says he feels as the real "test" to focus on. We went in and heard the worst news possible four and a half months ago, but for the most part nothing has changed in all of our lives. We're still doing the things Benjamin likes to do and we're just moving forward. We told him that it will be the same thing on Mon. If we hear good news or bad news, then we will come home and pick things back up again and go on. He has a big party at Magic Mountain to go to that night after the MRI for Adventures for Wish Kids, so we're trying to help him think more about the party rather than the scan. I'll update as soon as possible on Monday once we know something. Please say an extra little prayer for Benjamin on Monday!!!

Well we have to run off to school, but we'll be back on Monday. Have a great weekend!!

Happy Birthday Uncle Chuck!!

Love, The Jones Family

Sunday, September 5, 2004 11:19 AM CDT

Hi everyone!

We hope you're having a great holiday weekend!! We are doing just fine here, and Benjamin seems to have come through a big birthday week of celebrating with remarkable energy! In fact, we have been noticing and commenting on how much stronger and more energetic Benjamin has been over the past two weeks or so. He said that he can feel it, as well. He has been going to school every day for anywhere from 1 to 3 hours a day, and while he's pretty pooped out during the car ride back home, by the time we get home he has perked up and is ready to jump back into action. We've even had him outside playing again, which he doesn't always like to do when it is warm out. He's been out playing baseball, hockey, and basketball - and that is after putting in some time at school too! For awhile Benjamin was falling into bed every night, just exhausted, and now we're back to "strongly encouraging" bedtime again - haha! We havn't seen any signs of seizure activity in I don't even know how long now - I've lost track since the last minor twitching episode - it is just amazing!!! The only thing that can explain all of this must be all the prayers that are being said for Benjamin from all over. We are so thankful and happy to know that he is being thought of by so many, and that so many people are praying as hard as they can for him. It has to be making a difference because we've seen him getting stronger, and not only that, but today has a lot of significance for us. Four months ago today we were told that we probably had only 2 - 4 months left with Benjamin (Benjamin doesn't know this part). Many of you may know this already, but I didn't write it in any journal entries because we were trying desperately NOT to focus on this date. We knew that the 4 months wasn't a date that was set in stone or anything, but it is impossible sometimes not to feel like we're going on borrowed time. We were told that Benjamin would, maybe, have one or two good months, and then he would probably start to decline pretty rapidly. We are overjoyed to have had four wonderful months with Benjamin since that day back on May 5th, and he is still going strong! We truly never expected to see him walk back in the doors of his school, and we didn't dare to dream that we would celebrate another birthday with him. We're so grateful to all of you for all the prayers being said on his behalf because we can see it working, and we can feel the comfort and strength from all the good wishes for him. We're going to have another MRI for Benjamin in a few weeks just to see what the status of things are for him at this point. We know that we have to be realistic and accepting of the situation, but there is still a huge part of us that is hoping to hear something wonderful. In the worst case scenario we know that even if nothing has changed, at least this beast of a disease is progressing much slower than any of us anticipated, which is a miracle in itself because of how horribly aggressive medulloblastoma is. It usually progresses very rapidly, and we already know that Benjamin's case is even more aggressive than most. All we know is that today is a day that we get to have with our son, and that is more than we ever expected at this time.

Benjamin has had a great past couple of days. On Friday afternoon Fr. Mark and Sarah from Children's Hospital came over for a visit, and Benjamin really gave Fr. Mark a run for his money! Benjamin had him outside playing with his new airplane that he received as a birthday gift, and poor Fr. spent some time searching through the field behind our house after Fr. Mark launched it way out there. He came back in from the field with his socks covered in burrs, and we hope he didn't run into any poison ivy. Then Benjamin, Sarah and Fr. played baseball out back. After we came back inside Benjamin and Fr. played hockey in the kitchen for quite some time, and then Benjamin challenged him to some video games. About this time we found out that Fr. Mark had been on call at the hospital the night before and had only had half an hours sleep that night before. He was really up for all the challenges that Benjamin set out, but we teased Fr. that he didn't know that he was going to have to rest up for visits with Benjamin!! It was really great of them to come out for a visit, and we all enjoyed the fun!

Last night Benjamin went to his friend Andy's house for his Harry Potter birthday party, and he had a ball with all the kids. Andy's party was the best and most creative party I've ever seen. It was just like being at Hogwart's School - the kids were even divided into classes, and Benjamin was in Ravenclaw. They played Quidditch outside and Benjamin was thrilled that the team he was on won the game! They all learned some magic tricks, too, and Benjamin is really excited to sample from his bag of Bertie Bott's Beans today. Luckily Andy's mom warned us to have the wastebasket ready in case he wants to spit any of the beans out because some of them have some interesting flavors - like earthworm, vomit, dirt, etc... we had a good laugh reading all the flavors. There are lots of really good flavors, too - haha!! Benjamin was so excited to be invited to the party and he's still telling us fun stories from the night.

Unfortunately last night ended on a sad note, though, for Benjamin. I went in to check on Benjamin's little pets (two hamsters, two cats and two fish), and I found that Patrick, his little hamster (from his nurse Suzanne's nephew) had died in his sleep. He was all curled up in a little ball in the corner. We're not really sure what happened to Patrick because I heard him running in his little wheel the night before, and he had food and water in his cage. I told him that hamsters don't really live a long time like some other animals do, but we really hadn't expected Patrick to die so soon. Benjamin was very sad and didn't want to go to bed after that. Eventually he settled down, though, and he fell asleep while I was reading to him. He's got some plans for decorating a box for Patrick and he wants to have his Daddy bury Patrick under one of the new plants we bought. Two weeks ago we bought some perennials that we're still trying to get all planted, so Benjamin wants to put Patrick's box under one of those. He's feeling better about everything this morning, but Zachary doesn't get it at all. He keeps asking if Patrick is going to get up. Now he's running around the house saying that Patrick lives with Baby Jesus.

Well, that is about all that is new around here. Thank you so much for all of the prayers and encouragement for our family, and also for all of the great birthday wishes for Benjamin! We hope you all have a great Labor Day weekend!

Love, The Jones Family

Thursday, September 2, 2004 10:15 AM CDT

Hi everyone!

Thank you so much for all the wonderful Happy Birthday wishes for Benjamin on his big day yesterday!! He was so excited to hear from all of you as we read through the messages together. We've all had a great week of celebrating his turning 8 years old! Between all of the family who started arriving on Saturday, his party at Chuck E Cheese with family and friends on Sunday, and then bringing treats to school yesterday and our party at home last night Benjamin has really stretched this birthday out- haha!! Benjamin went back and forth for so long over what he wanted to bring in to his classroom for a treat that by the time he finally made up his mind we had to buy cupcakes rather than bake them like our original plan had been. It worked out really well, though, because Kroger had Shrek and Donkey cupcakes, and Shrek was his party theme this year. He was thrilled with the cupcakes, and the kids got a big kick out of taking the Shrek and Donkey decorations off the tops of their cupcakes, licking them off, and then wearing them as rings - gross, but good fun, right? His class sang Happy Birthday to him, and then after their treats they went outside to run off all that sugar at recess. Benjamin stayed for awhile after recess to go to music with the rest of his class, but he was ready to go home part way through which we had planned on anyway since we had his IEP meeting yesterday as well. Brian brought the boys home and I stayed for the meeting.

Benjamin's IEP meeting went really well. As I've said before, the Pickerington school district and Benjamin's school, Tussing Elementary, have been so wonderful to our family. They've anticipated Benjamin's every need and we havn't had a single worry about having all of Benjamin's needs met. Starting this coming Tues. afternoon Mrs. Boucher, who was Benjamin's spec. ed. teacher last year for math and reading, will be coming to our house to tutor Benjamin. Benjamin really likes Mrs. Boucher (we all do!) and he's excited to work with her again. He's also still going to be working with Nancy, too, so we're happy to have their time together to continue as well. The plan is for Benjamin to continue learning and being a part of what the kids in his class are learning so that during the times he is in school he will feel like he is a part of what they're working on. The goals are challenging enough to help him to continue moving ahead, but not so much so that they will be frustrating for him. While he is doing really well, he is not on the same level as the rest of the class because of the learning difficulties that have come out after all of his treatment. Our main goal is to keep him socializing, learning, and happy without making him feel like he's far behind. Everyone is really sensitive to this, and we really appreciate that. It is amazing how much has changed for him since going through treatment. One of his goals for this year is to work on taking words like "h-o-t" and taking out the "o" and adding an "a" to change the words. This has been somewhat of a struggle over the past year, but back when he was in pre-school (before diagnosis)he could do this easily. It's frustrating for me to see how things have changed for him, so I can't imagine what he thinks, but the treatments were necessary and worth it to have brought him into remission for a year, and still would have been worth it if it had brought about a cure for him. He has learned so much, and he still is, he just has problems putting on paper the knowledge that is in his head. For the most part he doesn't seem bothered about being behind, and I'm not always sure he pays much attention to where the other kids are at in comparison to himself. He seems to just like to socialize - haha!!

Last night we had a little birthday party, just the four of us, here at home. Brian made a little Mexican fiesta for Benjamin - he loves tacos!!! - and then afterwards we had cake and ice cream. It was just a really happy evening together, and we were able to celebrate and truly enjoy the moment with him. I think the anticipation of the big day was much harder than the actual day, if that makes any sense. Leading up to the birthday we couldn't figure out how to be happy and enjoy the day without letting our sadness be the overriding feeling -we didn't want to ruin the day for him or for ourselves, but when his birthday actually got here it was a really good day for all!! At 12:29pm (the time of day he was born Sept. 1, 1996) yesterday I held him and gave him a big kiss and sang Happy Birthday to him. I can't believe the little 6lb. 4 oz. baby boy with big blue eyes and a headful of black hair (so much hair that it looked like a little toupe - haha!)is 8 years old now. Even back then Benjamin always kept us guessing. After what was, I believe, our 6th trip to the hospital we finally walked out with a baby. I'd had pre-term labor and false labor so many times that we were back and forth to the hospital many, many times. Finally on Labor Day weekend - how appropriate - we were blessed with Benjamin Michael. We're just so grateful to have him with us and to love him every day!!!

Last night Benjamin told us "I had the best birthday. I played with everybody, I did everything I wanted to, and I got everything I hoped for!!" I guess that we couldn't ask for anything better than that!! Thank you so much to all of you for celebrating with us!!!

Happy Birthday Uncle Tim!!

Love, The Jones Family

Thursday, August 26, 2004 12:49 AM CDT

Hi everyone!

***UPDATED AUG. 30th***

I just wanted to do a quick update after Benjamin's big weekend. We had a wonderful weekend with family and friends to celebrate Benjamin's upcoming birthday. It was so great to see everybody and to have a chance to catch up and visit. Benjamin loved playing with everybody!! He sure was sad when everyone had to leave, both yesterday after the party and this afternoon when my side of the family had to go - visits always go by so quickly when you're having that much fun!! We all met over at Chuck E Cheese for a great party yesterday afternoon, and we all had a ball - kids and grown-ups, too. Benjamin was so excited to spend the afternoon playing with everybody, and he was wiped out by the end of the party. We can't thank everybody enough for coming down and helping us celebrate such a very special day with Benjamin. After all the stressing and worrying we (Brian and I) did over this day, it really was a special and fun-filled day - there really wasn't much room for sad feelings because there was so much going on and the kids were all having fun. Spending the day surrounded by family and friends made it all so much easier, too!! Benjamin was pretty down after everyone headed home today, but he cheered up quite a bit after spending the afternoon over at school. He spent the entire afternoon in the art room with Mrs. Sheridan, and when I went looking for him after school he was outside with her on "bus duty." I had to laugh - he helped put up signs with bus numbers so the kindergartners could find the right buses to be on. He was a little bit leary for me to leave when we first got there, but he quickly decided that he wanted to stay on his own. He met up with alot of his friends as they came in for art classes, and he had a great time visiting with Mrs. Sheridan and working with clay.

Benjamin's actual birthday is this Wednesday, and we're just planning to spend the day as a family. Depending on the weather, we have some fun plans for the early part of the day, and then he wants to bring in some treats for his friends at school in the afternoon. I can't believe Benjamin is about to turn 8 years old!! He told me that he's already saying he's 8 since he had his party - he's a nut!! He is looking strong and feeling really good, and we really havn't seen any new symptoms. We're so grateful that he's doing so well and that we have this chance to celebrate with him!! Earlier this month (and even up to party time)I was really dreading the birthday because of all the up and down emotions and we wondered how we could feel happy enough to celebrate - we just wanted to get the day over with, but after how well things went at his party I'm so grateful that we'll be able to hold him and hug him on his birthday, tell him how much we love him, and sing happy birthday to him!! ****

This is a little bit sooner than I usually get an update out there, but we just had to send out a huge thank you to a wonderful group of old and new friends from home (Ashtabula,OH) who got together and sent down a care package filled with so many gift certificates, gifts of money, and other goodies for the boys. We are so overwhelmed by the kindness and the generosity of all of you!! It was so fun to read down through the list of names of everyone involved in the project - friends from growing up together, going to school together, from church, and many other new friends from the community. It means so much to us that so many people up there (and all around) are thinking of and praying for Benjamin and our family and that everyone would take the time and energy to do something so special for our family! The very first thing Benjamin wanted to do was use some of the Bob Evans gift certificates for dinner that night - he was so excited as he pulled all the gift certificates out of the box. I wish you could have seen his face!! He's also very excited to take his baby brother to Toys R Us with the gift certificate from that store. You all made him so happy!! Brian and I really appreciate everything that went into this, and we will put it all to good use. My Dad has been doing a wonderful job as the head chef around here when my parents are in town, but when it is just the four of us here at home there are many, many nights when neither of us are up for cooking dinner and we really appreciate the gift certificates to so many great restaurants!! This will let my Dad off the hook sometimes, too - haha!! We're just really so grateful to have so many wonderful friends out there, and we thank you all from the bottom of our hearts!!! We can really feel the love and support and that brings a tremendous amount of comfort!!

Benjamin has had a great week health wise - he's feeling great, he's had pretty good energy, and we havn't seen any more seizures. He went over to school for the first day, and he was greeted with big smiles and cheers from people the whole way as he walked through the building. He really doesn't seem much different than the little boy who walked out of the building at the end of first grade. He's a little bit more unsteady, and he's looking at us out of the right side of his vision more and more often (he says that things look shaky sometimes when he looks straight on), and he's on anti-seizure meds., but the changes are so subtle that I doubt if many people can even tell. I can't even describe the feeling I had as we walked down the halls to find Mrs. Ralph's room. Principal Wilkinson even walked Benjamin the whole way there and they chatted about their summer - it was so cute! It wasn't a sad feeling at all, but really more a feeling of victory for Benjamin. None of us expected to see him walk through those doors ever again, but I had to actually tell him to slow down as soon as we got in the building. He was pulling along his brand new rolling school bag (an early birthday present from Gramma and Boppa), and he got so excited when he started recognizing faces that he started running down the hall - right in front of the principal - way to start off the year -haha!!! Mr. Wilkinson's grin was just as big as Benjamin's though, and they took off together. He had to stop to wave and chit-chat here and there along the way with so many staff members who were so happy to see him. He just continues to amaze us all - who would have ever thought this would happen!! We got to Mrs. Ralph's room and the kids were just getting settled and unpacking to get their desks organized. Benjamin didn't find anyone from his class last year, but hopefully once he's been in there for awhile he'll have some buddies in there. The classes get shuffled each year, but all the kids are back together for lunch, recess and some of the other special activities, so hopefully Benjamin can meet up with his friends from last year during these times. He really likes his new teacher and he's excited to be a second grader. The only thing that I couldn't figure out was why he wouldn't let me leave. In the past Benjamin has had a real independent streak, and I just expected that things would be the same. I stayed, though, and after about an hour Benjamin was ready to come home. We did get a schedule for the times and days of all the "special" classes like art, gym, music, library, etc... and Benjamin's plan was to come back for those. Then yesterday morning when we were talking about going over to school for music Benjamin was really reluctant and dragging his heels. Finally as the time got closer for us to leave he started crying and said that he doesn't want to go to school unless I can be there, too, because he's afraid of having a seizure at school. It had never occurred to us that he might feel this way, but it explained alot. We decided that we'll go over to school on Thurs. afternoons for library time, and I will stay in the building, and then Benjamin will go over to school for art class on Mon. because he feels comfortable staying with his art teacher since her daughter has been through treatment as well. He feels very safe with her because he says that she's a mommy who knows what to do about this stuff, too. We're hoping that as we do this schedule for a little while and his confidence builds that he'll be willing to go over to the school more often and be able to stay on his own. His new medicine is really working very well, and I think that he'll feel more at ease as time goes by and he sees that things are pretty stable. I'll have to cut this short today because we're getting ready to go over to Tussing right now for library time. Hopefully this will help to ease him back in. He said that he just feels so different from the other kids because they don't have brain tumors like him. We just don't know what to say sometimes to comfort him because there are no easy answers. We wish that he could just go to school and have his biggest worries be over tests and his social life, but he did say that sometimes when he gets busy with the other kids he does forget that he's different. Cub Scouts will be starting again soon and we think that will also help him to find a buddy in his class.

Well that's about all that's new here. Thank you for checking in on Benjamin!!

***UPDATE THURS AFTERNOON*** Just wanted to add in that Benjamin went over to school for library time, had a great time, and decided to go back to his classroom with the rest of the kids until the end of the day. Zachary and I waited in the gym for him to be dismissed with the rest of the kids. Benjamin said that he looked around the classroom and saw that he did recognize some of the kids from playing with them on the playground last year, and that made him feel so much better to know some familiar faces. He had some friends to talk with when they got back to the room, and he feels much more confident now about being there. Tomorrow is gym class at 1:00pm, and as of right now Benjamin says that he wants to be dropped off for class, and he's planning to stay until the end of the day like normaly. We're so happy that today's experience gave him so much more confidence to try this on his own again!! We're hopeful to have him in school for at least an hour a day, every day, if possible.

Happy Birthday Aunt Kate!!

Love, The Jones Family

Monday, August 23, 2004 11:24 AM CDT

Hi everyone!

Thank you for stopping back in to check on Benjamin! We hope you all had a good week! Benjamin had the most normal, average week that he's had since the medicine problems. He even went all week with no "twitches!" Saturday night he was twitching quite a bit again, and yesterday afternoon he noticed it while eating dinner. This was only the second time he's had a mild seizure during the day, though. It seems so strange to even call them "seizures" because they are so mild that they aren't what you would really picture when you think of seizures. This new medicine seems to be working very well, and most importantly we havn't seen any of the nasty side effects that Benjamin experienced with the last one. Tina (Benjamin's hospice nurse) was here today to take a blood draw to check the level of medication in his blood, and she explained that this may be as good as it gets for controlling the seizures. If that is the case then we're pretty OK with that, and so is Benjamin. He knows that the seizures don't hurt, and they don't last for very long, and the majority of the time they only happens during his sleep so he's not even aware of them. What is so fantastic is that Benjamin's quality of life is back to what it was before - he feels good, he plays and he's enjoying himself. We've even noticed that he's started talking about plans for things far into the future again. He's talked about Hem/Onc camp again next summer and even where he's going to buy his house when he grows up. While it is hard to hear him talk about these things knowing how very unlikely it is that these plans could ever happen, at least we know that he's not dwelling in the fear anymore and that he has hope for himself. As stable as he's been again it is so hard for us not to start thinking along the same lines - we know in our hearts what his prognosis is, but we still ask ourselves if maybe this all some kind of mistake or nightmare, that it can't possibly be real. Whatever it is, he's here today and nothing bad is happening today, and that is as far ahead as we can think most of the time.

Tomorrow is a day that we truly never imagined that we would see - Benjamin starts the second grade!!! He is very excited about getting back to school, seeing his new teacher and catching up with his friends. I cannot believe that tomorrow morning I get to drop him off at the front doors of the school again, watch him struggle to get that big back-pack on, see the big grin and wave good-bye, and watch him head off for another day of school. It sounds so silly, but that little routine was so important all last year, especially after Benjamin had missed the entire kindergarten school year. I need to speak with his new teacher, but I already know that Benjamin will insist that I drop him off at the normal drop-off route and then park the car and come in on my own - I'll get ditched again - haha!! That is OK by me, though, because I can't wait to get back to our routine!!! This is what he should be doing - going to school and being independent without his Mommy getting in the way - haha!! He's probably not going to be there for the whole day, but it is so great that he's even going to be there for any part of the day. We're having his IEP written out to be the same as the IEP that he finished out the year with in May - he's going to be tutored at home, but he can come to school as often as he likes, for whatever special classes, plans or activities that he likes. He's already decided that he'd like to go on the days that his class has art - his art teacher came over several times this summer to do special projects together, and he'd like to go for gym, recess and sometimes for lunch. What is so great, too, is that Nancy will still be tutoring Benjamin one day a week, and Mary Boucher, his special educ. teacher for math and reading last year, will be coming to tutor him two days a week. We're really happy with this whole situation because we all know and love both teachers and we think this will give Benjamin the best of both worlds - a little school time in the building and the rest of his school time with two teachers whom he really feels happy and comfortable with. We just can't say enough about how great all of the staff at Tussing Elementary have been and the Pickerington School District, as well. They have all really gone above and beyond to make sure Benjamin can do well and succeed in his learning and socializing at Tussing. We know that not every family in the same position as we are has been as fortunate, but we're so blessed that these people have come into our lives.

Another day that we never dreamed we'd get to celebrate with Benjamin is rapidly approaching - his 8th birthday!! Without really going into specifics, we didn't think we'd still have Benjamin with us by the end of the summer, so to be at this point in time and for Benjamin to still be doing so well is just unbelievable. We've left it completely up to Benjamin what he'd like to do for his special day, and he chose a birthday party at Chuck E Cheese. So Chuck E Cheese it is!! He's getting so excited to spend the afternoon with family and friends - pigging out on pizza and playing video games - his two favorite activities - haha!! While we're so grateful to have him with us for this birthday, we're finding the days leading up to his birthday surprisingly difficult. It is so very bittersweet to have the joy of celebrating a birthday with your child, but at the same time knowing that it will most likely be for the last time. Brian and I have both asked ourselves, how do you have a party and be filled with joy in this situation? It will be wonderful to watch Benjamin have exactly the party that he's wished for, but inside it will so hard to keep up "the front." We're just trying to focus on being thankful that we have this opportunity with him and savoring every minute of that day. This isn't the first event that we've had come up that we've worried and stressed over, wondering how will we ever get through without completely losing it - we just don't want to be sad in front of Benjamin and ruin his happy times. Each time these things have come along we've worried so much, but when the days actually happened we found that things went surprisingly smoothly - like his First Communion, Mother's Day, Father's Day, etc...we'll all get through this too. We know that Benjamin will have a huge grin on his face the whole time, and it is impossible to be "down" when you're around him. We're just going to look forward to spending the day with family and friends and, of course, Benjamin!!

Thank you so much for keeping Benjamin and our family in your prayers! We appreciate all the support more than you know! I'll update more after Benjamin's has had a couple of days back-to-school!

Love, The Jones Family

Sunday, August 15, 2004 10:41 AM CDT

Hi everyone!

We hope it was a good week for you all! This past week was a complete turn-around for our little guy. Each night of sleep (usually 12 - 13 hours a night) brought more and more of the "old Benjamin" back. He's been off the Dilantin (anti-seizure med) since last Sat. and his rash, the sore throat, mouth sores, throat sores, forgetfullness, agitation, dizziness, and the majority of slurred speech have disappeared. Benjamin has that big huge grin of his back (he's almost always smiling!), and best of all we've heard him all-out laughing again!! He is getting the biggest kick out of that old cartoon (on the Boomerang cartoon channel) the Laff-a-lympics. Brian and I watched that when we were kids, and we found it for Benjamin to watch. He's been cheering on the Yogi Yahooies and the Scoobie Doobies teams and booing the Really Rottens team - haha!! We hadn't seen much of the smiling and giggling over the previous two weeks, so it has been wonderful to have Benjamin back as the medicine works its way out of his system. He has been on his new anti-seizure medicine (Tegretol) for nearly a week now, and it is doing a pretty good job for him. Last night was the first time since he started it that he didn't have any break-through focal seizures (very mild) during his sleep. We're just watching him closely for any signs of adverse reactions because this medicine has the exact sames side effects as the last one - ugh!! So far, so good, though. He has been such a trooper about taking all of his medications. Before his relapse we had just whittled his list of meds down to one, and now we're back up to four. He never complains, though.

Benjamin had a really good week this week! He worked with Nancy twice this week, and she said that his concentration and focus were right on track again. She said that he worked really hard and gave his best all the time. I think his sleep deprivation of the last couple weeks really affected how he did with Nancy, but she said that the old Benjamin was back this week. We also enjoyed a family trip to the Columbus Zoo and Aquarium on Thursday afternoon. It was a perfect day for Benjamin to be out since it was a weekday afternoon and the zoo wasn't busy at all, and it was a much cooler day so he was able to enjoy being out without having to be in the heat. The boys rode in the wagon together and they loved looking at all the animals, riding the merry-go-round, and eating ice cream. It was a great afternoon!! The boys loved that Brian took the afternoon off for the zoo trip. Brian has used quite a bit of his vacation and personal time, and we were so grateful to find out that so many sweet and generous people who work with Brian have come forward to donate some of their own vacation time for Brian to use when his own time runs out. We can't thank all of these great friends enough for such a gift!!! It is such a huge weight off our minds to know that Brian will be able to take time off to spend as a family when he needs it without worry. Thank you all so much!!!

This weekend has turned out to be a pretty quiet one after all. We had planned to make a quick one day trip to Ashtabula to celebrate with little cousin Ashton his big one year old birthday. His birthday is tomorrow, but his party is today. We were all looking forward to seeing everyone and also visiting my Grandma who celebrated a big birthday of her own two weeks ago. We had planned a trip up for that weekend as well, but the night before we were to leave was the night the seizures began. We had to decide against today's trip, though, because we were afraid it would just be too hard on Benjamin. He had a rough day yesterday. The day started out just fine, but Benjamin threw up early in the afternoon. He spent the rest of the afternoon up in bed resting and watching cartoons. We wondered if he'd picked up a bug while we were at the zoo, but in the back of our minds we wondered if pressure is building up in his brain. We've noticed that he's either gotten sick once a week now, or he's had the feeling he's going to get sick but is able to hold it off by taking deep breaths. Before his original diagnosis the only symptom Benjamin had until the week before he was diagnosed was vomiting. It started out that the episodes were pretty spaced out, but gradually moved closer and closer together in occurances. With two brain tumors growing inside his little head we know that pressure will have to be building up at some point, but because of the fact that Benjamin has a shunt in his brain we were told that the shunt would give Benjamin additional time since it is preventing fluid from building up too much. Benjamin only threw up just the one time and he spent the rest of the day insisting that he felt fine, wanting to eat, and acting just like himself (except much more tired). Unfortunately this feels all too familiar. We decided that it was probably better not to try a big out of town trip, and I think it was the best thing to do, even though we really miss visiting with all the family!! Benjamin never even woke up until after 10:00am this morning, and while he had a period of time when he, his brother and his Daddy played together for awhile, he is back laying down and watching cartoons. He's eating just fine and says he feels fine as well. It sounds strange to wish for your child to have a "bug," but we really wish we would see some signs that that is what this is, considering the alternative.

Other than that, things are really pretty good around here. Zachary is running around and loving being a little two-year-old. He talks non-stop and loves to be with Benjamin. That weekend Benjamin was away at camp was really tough on Zachary. They are the best of friends and, after too much time together, also at each other - haha! Brian and I are doing alright, a little tired, but all in all we're ok. We're mostly so happy to see Benjamin feeling like himself again. He's feeling better and not so agitated either. After a two week lay-off Benjamin has been enjoying time back outside on his Green Machine and playing on his swingset with Zachary. He tires pretty easily and quicker than he used to, but at least he's back out there again. He's a happy-go-lucky little guy again. Thank you so much for all of your prayers for his health, peace of mind, and for strength for all of us. People ask us how we are able to deal with all of this, and I think the prayers for strength must be the only thing getting us through. Most of the time we don't feel all that strong at all, but for some reason we're lifted back up and just taking a little bit of this at a time. Brian and I both found that while we thought that we had accepted what was happening and were prepared for changes that are coming, when Benjamin's symptoms were changing so quickly and we thought this was progressing rapidly (because of the symptoms that we later found out were medicine related rather than tumor progression) we were totally unprepared. We learned that you just can't be ready for this, ever. We're back to trying to take this a little bit at a time and loving that we have more time with the old Benjamin again. It has been almost three and half months since we found out the awful news that Benajmin had relapsed and that there was nothing more that we could do, and here he is doing remarkably well, considering. We never dreamed that he would be doing so well by this point! Thank you so much for checking on Benjamin and for keeping him in your prayers!!

Happy First Birthday Ashton!! We're sorry we missed your party!!

Love, The Jones Family

Monday, August 9, 2004 4:46 PM CDT

Hi everyone!

Hope it was a good weekend for you all! We got our Benjamin back yesterday after MISSING him greatly while he was off to camp.

Last week was a very long, exhausting and difficult week for Benjamin. He did have a very fun afternoon at his school nurse's house (Tina's house). We were invited over for another pool party and get-together with friends from the school. We almost didn't make it, however, because of how rough a time Benjamin was having. Benjamin had been on his Dilantin (for seizures) for about a week or so, and we were seeing real improvements in how it was holding off all the twitching. We havn't seen anything in at least a week. Unfortunately Benjamin's body is not clearing the drug out of his body well, and he came down with a nasty rash, a sore throat, sores in his mouth and throat, slurred speech, dizziness and forgetfullness - all as side effects from the medicine. At first we didn't realize the medicine was causing this and we were really concerned especially because of the slurred speech and dizziness. We were so afraid that things were progressing very quickly. It was such a relief to hear that these are all most likely due to the high levels of Dilantin that hasn't been clearing out of his system. Another tough part of this has been that Benjamin's paradoxical reaction to medications happened again, and rather than being drowsy from the Dilantin he was staying up until all hours of the night. By the third night when we were still up at 3:00am we knew something wasn't right, and he was started on a sedative to take each night before bed. Thank God that is working, but up until Thurs. of last week the poor kid was just exhausted. By Thurs. he was convinced that he wasn't going to be allowed to go to camp because of his sore throat, and at that point we still didn't know that his problems were medicine related. He woke up on Friday morning with a rash, the sore throat, and he was unable to eat. He felt fine, but still he was having these other problems so we brought him to the Hem/Onc Clinic for Suzanne and Dr. Olshefski to check on him before we put him on a bus for camp. By this point we didn't want to let him out of our sights for any length of time, but going to camp was so important to him so we were determined to get him there if possible. Unfortunately he couldn't eat anything when he took his morning dose of Dilantin, and that made him start to feel kind of sick. This little guy who made it all the way through treatment without ever missing the "bucket" threw up in the waiting room of the clinic. That really sent him into a tail-spin because he thought he really wouldn't be allowed to go to camp since he'd thrown up. We all kept trying to reassure him that everyone knew that he only got sick because he took medicine on an empty stomach, but he wasn't buying that. By the time we got the OK to load up for the bus Benjamin was really exhausted and not in the same frame of mind that he was in last year. He still wanted to go, though, and we really appreciated that Suzanne and Dr. Olshefski worked him through the clinic so quickly so that he was still able to go to camp. At least this year I knew for sure that he was on board the bus because I put him on the steps of the bus myself - haha! He didn't get to ditch me this year! We really appreciated the phone calls from Benjamin's counselor Dennis, from Suzanne, and from Sarah (from Hospice) for the updates on how Benjamin was doing! That gave us such peace of mind because we were so worried about sending him off. We also are very grateful to Linda (from the Hem/Onc Clinic) for letting Benjamin "bunk" with her since he was so worked up at night. Benjamin had a lot of fun at camp, but he does have some regrets about some of the things he said and did while he was there. Apparently there was another boy there that he didn't get along with and they tangled more than once. He felt really badly about it, and we've heard some stories about their escapades. All in all, though, he had a good time, and he's so glad that he went.

Well, back to the Dilantin problems - the rash got worse while he was away, so he's been taken off the medication. His hospice nurse brought a new medication out today, so hopefully this will work. However, this medication has the exact same side effects if you have an adverse reaction. We just have to hope and pray that this doesn't start again. His rash and sore throat are much better today so we're hoping to keep moving a good direction!!

Benjamin and his little brother went to Bible School on Sunday evening and had a great time. They listened to stories and sang songs, and Zachary is still walking around today doing some of the hand-motions that went along with the songs. We were wondering if Benjamin would have enough energy to go after being at camp all weekend, but he perked right up and really enjoyed himself!

We had a really great day today with a couple of fun visits! Friends that I grew up with, sisters Mollie and Maureen, came all the way from Northeastern Ohio with their kids to spend the afternoon playing and visiting. It was so much fun to see them all after not seeing each other for years, and the kids had alot of fun getting to know each other again and playing inside and outside. We really appreciate that they came all that way to make a special visit!!! Benjamin's teacher Mrs. Fortenbacher also stopped by to visit after doing some work on her classroom. The kids always love seeing her, too! She's planning on stopping back again next week sometime.

Well, that's about all that's new here. We're just so happy to have our little guy back. While we were so happy for Benjamin that he had this opportunity to go to camp again, it was a really hard weekend for us left behind. Zachary missed his "brudder" so much and continually asked for us to "go pick Benny up." For Brian and me it was even harder because we couldn't help but think of it as an agonizing glimpse into the future. We were thrilled that Benjamin got to experience camp again, though, since when we first found out that he had relapsed we never expected that he would even be able to go at all this year. We have been so blessed that Benjamin has had three good months since then! Thank you so much for your continued prayers for him and for our family!

Love, The Jones Family

Monday, August 9, 2004 4:46 PM CDT

Monday, August 2, 2004 11:34 AM CDT

Hi everyone!

Hope you all had a nice weekend! The boys had lots of fun on Thursday and Friday with Aunt Kim, Uncle Tim and Ashley and on Sat. and Sun. with Gramma and Papa Jones. The kids all had a ball playing together inside and outside, and we were lucky to have great weather for playing in the pool and sprinkler. Brian had picked up special balloons for making water balloons and there was a fierce battle - Kids vs. Grown-ups!!! Benjamin got in lots of video game time against both his grandparents - I didn't think he was going to let them come out of the playroom - haha! Benjamin rounded out the weekend with a trip to the pet store with his gift of money from Gramma and Papa. He had told them of his plans to buy a friend for his hamster, Patrick. Last night we brought home Mario - he's very cute and pretty easy going. Benjamin bought one of those neat cages with tubes and tunnels for Mario and he had enough to get one for Patrick, too. He didn't want Patrick to miss out on all the fun!!! The kids are enjoying watching the hamsters running around and playing in their SEPARATE cages. It took alot of convincing before Benjamin understood that we couldn't keep them together. He couldn't understand the whole concept of of how quickly hamsters multiply, even when you're sure that they are both boys. This turned into a brief anatomy lesson as well - haha!!

Benjamin is doing pretty well on his anti-seizure medication. He's still breaking through and having occasional light seizure activity. It has only happened once while he was awake, and he didn't appreciate having any notice or attention drawn to it. Thank God the seizures have been so mild - if he's sleeping he doesn't even wake up, and the one that happened while he was awake just looked like a little twitch in his left arm, hand, leg and foot. He knew that Brian and I were trying to keep an eye on him while it was happening and he didn't like that at all. We asked him how he was doing and he quickly said "I'm fine," and it was obvious that he wanted to just leave it at that. There had been talk about possibly adding a second anti-seizure medication, but after Benjamin's blood draw on Friday we found out that he already has a high level of medication in his system and to add any more to the dosage (or to add a second med.) could be too toxic for him. We're going to try to manage things as is for right now.

We don't have alot planned for this week. Tina (his hospice nurse) will be visiting twice this week, and Benjamin will have his meetings with Mrs. Brinda on Tues. and Thurs. His art teacher might be coming over on Tues. as well to do some arts and crafts with him. He loves this and is looking forward to that, too. He was also invited by one of our neighbors to go to the Summer Bible School at their church this week. We'll see how his energy level is and if he's up for it. He thought he might like to go for one or two days. As far as camp goes, we're still a GO for this Friday morning. We'll bring him up to Children's to sign in and board the bus. We were given the opportunity to go up to camp with him, but he was set against that. We really appreciate the offer though!! Benjamin's doctor thought it might be nice for our peace of mind. Benjamin has a real independent streak, though, and it is very important to him that he does this on his own. It will be hard not to have him under our roof so we can check on him as often as we'd like, but Brian and I really have no worries since we know that he is going to be surrounded by the same people who took such wonderful care of him throughout his entire treatment period. I asked Benjamin if it would make him feel better if we were there in case he had another seizure, and he said that he was fine and would be fine if it happened. This is so important to him to prove that he can achieve going on his own, so we don't want to block that. I hate that we won't see him for three days, but anything that is important to him to do, is important to us as well. Last year he was so funny as we waited for the buses to board for camp. We waited in the auditorium until the kids were called and Benjamin took that time to give me my hugs and kisses good-bye. Then the second the kids were told to line up and leave he took off running and I only caught glimpses of him as I tried so hard to catch up to him. I had the baby in his stroller and we couldn't possible maneuver through the crowds of kids and parents. He was so far ahead of me I didn't even get to see him get on the bus. I was a little worried and they did check and tell me he had indeed boarded a bus - haha!!! The windows of the buses were tinted so I couldn't make out where he was sitting, and all the kids were wearing cowboys hats since camp last year had a western theme. Zachary and I just stood there waving like mad at the direction we thought Benjamin was sitting. I told him that this year he has to stick near me so that doesn't happen again. He just grinned - of course that probably means he's planning to ditch me again - haha! This year Brian is planning to come up to see him off too, so between the two of us we should be able to keep him in our sights - haha!

Other than that, not much is new here. Benjamin is still feeling really good, just more tired. He was starting to tire out a little more easily anyway, and drowsiness is a side effect to his new medication. Even at that, though, when he tires out he lays down for a brief period of time, and then he bounces right back up again and plays like crazy. It feels great to be able to still tell him to "settle down!!" and "stop running through the house!!" I'll update more probably after we see him off on Friday morning. Thank you so much for keeping Benjamin in your prayers! Please remember the other kids fighting this disease in your prayers too. Over the last few weeks we've seen more than a few of the kids we follow on other web pages also go into hospice care in their areas, and some of the parents have already lost their children. It is so impossible to believe that this happens to anyone, especially to little children. Thank you for checking in on Benjamin and for leaving such great messages for him!

Love, The Jones Family

Wednesday, July 28, 2004 5:01 PM CDT

Hi everyone!

Hope you all have had a good week so far! Benjamin is still doing really great, but he's had a few changes this week. We had planned to be in Ashtabula this week to visit with family and friends and to celebrate my Grandma's birthday this weekend. Benjamin had a wonderful weekend which finished out with a really fun picnic and time playing outside with the Brinda family (Nancy is Benajmin's tutor). They played baseball, football and lots of wrestling - which is Benjamin's personal favorite. Benjamin was fine on Monday and had another really good day. The boys and I did some errands and stopped off at McDonald's and enjoyed the afternoon together. Benjamin went to bed with no signs of anything unusual, but later on in the night we could hear him making tiny sucking noises. Benjamin has been sleeping downstairs on an air mattress - actually both the boys and I have been sleeping downstairs so we don't have to worry about Benjamin taking a tumble on the stairs coming down in the morning when he's still a little groggy. At first we didn't really notice what was going on, then it seemed that these noises were coming in a regular pattern. Every 10 - 12 seconds Benjamin's mouth was twitching (like a little mouse nibbling) and he'd make these little sounds that sounded like a baby sucking on a pacifier for about 4 seconds. We called Benjamin's hospice nurse, Tina, and she said that as long as this wasn't moving down to his extremities we could watch him for the night. Benjamin got through the night just fine - we had woke him up and asked him questions which he was able to answer making perfect sense, but as soon as he fell back to sleep it started back up again. On Tuesday morning Brian woke me up because he had been watching Benjamin and noticed that the twitching was now in his left cheek, left shoulder and left arm. We were very lucky to reach Tina as she was driving in to Children's, and since we live pretty close to each other she drove straight to our house. Tina was able to observe Benjamin both asleep and awake. By the time Tina arrived the on again, off again twitching had extended down to his left leg and foot. I should stop here and say that throughout everything from the night before and through the next day these seizures never woke Benjamin or disturbed him in any way. They were determined to be focal seizures which I guess are supposed to be very mild. Once Benjamin was awake for the day he was completely fine, other than a noticed change in grip strength in his left hand from the day before when Tina had been here for his weekly check-up. He wasn't even aware that anything had happened. We think this is the biggest blessing because if this had to happen at least it didn't hurt him or scare him, and we found out that he needed to be on anti-seizure medication before he had a major seizure. We had to explain what had happened so he would understand why he was starting a new medication, but he was fine with the news (I think because he just wasn't aware of what had happened), and actually he has looked forward to the side effects from the medicine which causes drowsiness. I know it sounds strange that he would look forward to that, but his energy level has dipped some and he likes the naps!!! So far he has tolerated the anti-seizure medication just fine, and we're so happy to say that he had a good night last night. About an hour after he went to sleep he did have some very light twitching in his right hand and right foot for about 45 minutes (on again, off again), but by the time I went to bed it had completely stopped and he got through the night just fine. Because of this new change we're no longer considering the MRI for August 9th. The reason for the MRI was to see where we stood since we really hadn't seen much in the way of change up to this point, but unfortunately this change has brought an answer to that question. Our hope and prayer for now is that this is just a little step down that will level out and give him more time with no new changes. We can't thank Tina enough for being here with us yesterday - she stayed right here all morning and into the afternoon and got us started on the new medication. What a tremendous feeling of support it gave us to know that she was right there to help Benjamin with whatever he might need! We weren't able to go to Ashtabula since Benjamin has to be monitored this week as he adjusts to the new medication and it is determined what the proper dosage for his needs should be. However we are tentatively still a GO for camp week after next!! We're hoping, hoping, hoping that nothing changes and that Benjamin can be off for a weekend of fun with the kids, doctors, nurses and friends from Children's who will be at Camp. The theme this year is Nascar so Benjamin is excited to see what will be involved!

Today the boys had a great afternoon with Suzanne (Benjamin's nurse throught his entire treatment)and her little girl, Kelly. They were looking forward to seeing them both all day, and the kids had fun playing outside on the swingset and inside with the toys and play-doh. Zachary is still playing with the play-doh, but Benjamin has crashed for the afternoon - he's having a little nap. He took a dose of the medicine earlier and it has kicked in. Even though this was an unexpected development this week with the little seizures, Benjamin is still doing great, feeling great, and having lots of fun! He played baseball out back with Suzanne this afternoon and he was hitting the ball all over the place - he's still got it! The weakness in his grip yesterday hasn't stopped him from hitting the ball, and he's still crushing me (and I'm really trying my hardest!!!!) at all of his video games - haha!

We're looking forward to a visit from Aunt Kim, Uncle Tim and Ashley tomorrow and maybe some more family this weekend if the timing works out. The kids were on the phone with each other last night making plans for face painting, playing outside and hopefully a trip to the Violet Festival which is going on here in town this weekend. It is a really nice festival with lots of games, rides and fun for everyone. If Benjamin is feeling good than we're off! Tomorrow is also "Mrs. Brinda Day" so the kids always are ready for a visit with Nancy.

Hope you have a great weekend! Thank you for checking back in on Benjamin and for keeping him in your prayers!

Love, The Jones Family

Thursday, July 22, 2004 10:50 AM CDT

Hi everyone!

Thank you so much for continuing to stop by and check on Benjamin, and thank you also for all of the great messages in his guestbook. It really means alot to us to hear from everyone, and Benjamin's eyes get so wide when we tell him about all the people who care about him and are stopping in to see how he's doing. All of that support can really be felt, and even though our family is going through a very hard time right now we can really feel the love and encouragement from all of you.

Benjamin continues to amaze us by how well he is doing, how strong he is, and how he keeps charging ahead each day - with still very few signs of what is happening. Tina (his hospice nurse) was here on Monday and the only differences she is noticing are a little more unsteadiness and some differences in how his right eye is tracking. This eye has always tracked a little bit slower than the other, but it is a little moreso now. Other than that he is doing really well, and just as important, his spirits are much better! Getting the PICC line out has really transformed him - he is so much happier and more carefree. We're so thrilled for him to have this freedom!

When I last updated Benjamin had been invited to a pool party at the home of his school nurse, her name is also Tina. The timing was great because his arm was healed from having his line out so he had no worries about getting his arm wet. The weather was beautiful on Friday, and it was so wonderful to spend the afternoon with Tina and her two boys, some good friends we used to live across the street from, and Mrs. Fortenbacher (Benjamin's first grade teacher) and another first grade teacher from Tussing Elementary. Benjamin and Zachary had a ball with all the kids, and it was so nice to catch up with everyone and relax in the pool. The kids played in the pool and they also played video games in the house when they got tired, and by the time we got home later on in the afternoon both the boys were tired out. It was just a really great day!! We really appreciate the invitation from Tina and the chance to meet her boys and to visit with everyone!

We had a great weekend visiting with Uncle Chris, Aunt Adria, and cousin Ashton last weekend when they came to our house. Benjamin was so happy that his line was out, and one of the first things he said after it was pulled was that he couldn't wait for Uncle Chris to get here so he could really wrestle with him - he knew he wouldn't have to be careful of that arm!! It was hard to say good-bye when it came time for them to leave, but we just kept telling Benjamin that we would see them, and all the rest of the family, very soon when we go up to Ashtabula for a visit.

On Tuesday Benjamin was picked up by Kathy, (she was his physical therapist at Children's) and he went over to the Postle's house to spend the night. Her son Austin is a little bit older than Benjamin, and they have lots of fun playing together. Benjamin had never spent the night at their house before, but he was counting down until Kathy came over after work from the minute he woke up that morning. He said that he had a great time at their house, and we were so happy that he was feeling well and able to do it. Kathy said that he did have a very brief headache at around midnight and that his leg bothered him a little bit the nest morning, but neither episode was bad enough to require Tylenol, so that is good news. Then yesterday after a breakfast of M&M pancakes - he was raving about that (he and I both love pancakes with chocolate chips or any kind of chocolate involved - haha!) - they were off to COSI (a hands-on science center with lots of really cool exhibits that are made just for kids). Benjamin loves COSI, so we really appreciate that Kathy invited him along for the adventure. An added treat was that they all met up with Karen, who was Benjamin's occupational therapist at Children's - he hasn't seen her in quite some time because he was discharged from OT many months ago. They had quite a day, and we thank the Postle's for inviting him to enjoy such a fun couple of days with their family!!

Yesterday my Dad (Boppa, to the boys) and Aunt Kate came down for an overnight visit, and we had fun night and a birthday party for Boppa. Everybody headed back to Ashtabula this morning and I don't think the boys really get it yet because they seem to think that Gramma, Boppa, and Aunt Kate are just out shopping - haha! I have to keep reminding them that they went home for a bit.

Today is "Mrs. Brinda day" as the boys refer to every Tuesday and Thursday. They always enjoy their time together, and we're hoping to maybe get together with them this weekend as well. Nancy and I talked on Tuesday afternoon and she is going to start steering him towards brushing up more on some reading and math, while still including the arts and crafts and games they've been working on this summer. Since school will be starting in a little over a month we're hoping to refresh his memory a bit to get ready for second grade. I still can't believe that we're even able to (cautiously) plan for this. Last May when we were given the awful news and probable amount of time left involved we never even dared to dream of possibly sending him off to second grade. We know that nothing is for certain and this may not come to pass, but just to hope for it has been such a boost for Benjamin and for us. I had been so dreading when all the "back-to-school" stuff would start coming out because I thought that it was going to be so painful (for Benjamin and for us)to watch everyone getting ready to do just what all kids should be doing at that time of year and knowing that Benjamin wasn't going to have a part in that. Here we are two and half months later and we're helping Benjamin pick out school supplies (he bought pencils with his name on them and a ruler with his brother's name on it a few days ago at Wal-Mart). We have an MRI scheduled for August 9th after he comes back from Hem/Onc Camp, so we're just praying so hard to hear something great! We know that he's got an awful lot going on inside of him between the two brain tumors and the multiple spots throughout his spine, but maybe things are not growing as fast as we'd all thought. All we know is that we never expected to be this far after relapse and still have him essentially doing just the same as he was while in remission. We can see some little changes, and so can he, but thankfully nothing has been severe at this point.

Thank you so much for keeping him in your prayers - all the prayers for his peace of mind have worked because he is so much more relaxed than he was for about a week or so when all the worries and fears seemed to overwhelm him. For the most part he is not as restless in his sleep as he had been also. He's still really grinding his teeth, but he's not tossing and turning as much. He's not having nightmares about the PICC line either which is great! Benjamin, Zachary and I have been sleeping all together for the last couple weeks, and I have been sleeping between the two of them so they wouldn't wake each other. Last night I got up and when I was getting back into bed they had snuggled in right up close to each other(in their sleep) and refused to be separated. I thought I would let them sleep that way until they started disturbing each other, but they actually slept so soundly stuck together - they looked so adorable like that. It seemed to comfort both of them! They certainly butt heads off and on during the day, but they're also each other's best friends. My Mom looked in on us the other morning and found Zachary awake and playing with his Little People while Benjamin and I were still asleep. She said that Zachary walked over to us, looked at each of us, and then leaned over and gave Benjamin a big kiss (without waking him). Then he went back to his playing. I love the mental picture of that!!!

We hope you all have a great weekend and I'll update again soon!

Love, The Jones Family

Wednesday, July 14, 2004 9:43 AM CDT

Hi everyone!

**Update Thurs. morning** Hi again! I just wanted to send out a little note because Benjamin had a very special day yesterday. For the past week or so Benjamin has been very upset about his PICC line in his arm (his IV for just in case he needs medications). He has told us that just looking at his arm makes him really sad and keeps reminding him all the time of what is happening to him. We also felt like the PICC line has been holding him back from things because it has to be kept dry. We were given the go ahead to let him swim and play in water, but we've not been able to keep the area completely dry even by covering it and wrapping his arm in Saran Wrap and duct tape. We know that it concerns him because if we're out and it starts to rain he pulls his shirt sleeve down over his arm to protect it. After talking with Tina, Benjamin's hospice nurse, and explaining how unhappy the PICC line is making him, Tina checked with Benjamin's doctor and we found out that we could have the line pulled. Brian and I agreed that this would be the best thing for Benjamin because we want him to enjoy everything to the fullest at this point, and we have some other pain control options that we can use if it becomes necessary. Benjamin is able to swallow his morphine (which we've really only needed twice to this point), but if he loses the ability to swallow we can try a patch that releases the medication through the skin, or Benjamin can have a concentrated dose of medication that melts under the tongue. Since yesterday was Benjamin's regularly scheduled visit with Tina he was thrilled to find out the line could come out right that afternoon. We gave him some morphine before Tina arrived and he was feeling calm and ready in case the removal was painful. The part that was hardest for him turned out to be the suture removal part, and the line came out quickly and easily! He is SO happy now! He only has to wait 24 hours before he can jump in a pool, and that is just right because he was invited to a pool party on Friday afternoon - yea!!! just in time!!!! Last night just before he fell asleep he told me that he feels so happy now, like when his tumor was gone and he had his tubies (broviac IV) taken out. That means the world to us!!

Benjamin also seems to be more at peace with all that is happening - thank you all so much for praying for his peace of mind! We've really seen a difference in him over the last day or so. A few days ago he had said that he wanted to have a talk with Tina about things he would be feeling throughout the whole process as his body is wearing down. Then last night when I asked him if he still wanted to ask Tina about that on her next visit he said "no, I don't really need to know any more now, I don't feel scared." Something is making him feel comforted and we can only hope that everyone's prayers must be working because he really hasn't asked us any more questions or seemed so worried and restless in the last day or so. He did tell me last night that he noticing some changes in himself now. He can tell that he is losing his balance more, and he also said that if he is looking in one direction and moves his body in another direction (not in the direction in which he's looking) that he can feel himself losing his balance very easily. This is the first time he's admitted that things are changing. He seemed very OK talking about it, and I think that he's realized these things for a little while now before actually saying it out loud. There is no way to describe the horribly sad and sinking feelings, on our part, that comes along with the realization that changes are starting. I can't even imagine how it feels for him, but he is still so strong. At least he is focusing on making plans for camp, school and his birthday - we're taking those as good signs. I'll update more after the weekend - thank you for stopping by to visit Benjamin!**

I'm sorry we don't have a swingset picture up yet, but hopefully Brian can get some pictures posted in the next night or so. I'm not very "technical" at all - I'm lucky I can do e-mails and Benjamin's web page - haha!

Benjamin had another busy and fun-filled week! Last week his first grade teacher stopped over for a visit. Benjamin was looking forward to seeing her and they shared McDonald's sundaes at our house while they chatted and got caught up. The boys were very excited to show her the swingset and to just plain "show off" - haha! We also got the scoop on how things are going over at the school and talked about looking forward to school starting up again in August. At the end of the school year the ideas of Benjamin going to camp at the beginning of August and going back to school at the end of August seemed so far-fetched given his prognosis. Now that we are almost half-way through July and still only seeing very subtle changes, we are finding ourselves making plans for Benjamin again that we never thought would be possible. Of course we know that things can change, but Benjamin is counting on doing these things, so we've decided that if it is giving him something to look forward to and something to hang on to then we're going to count on it, too. The tentative plans for right now are to have an MRI in mid-August just to see where we stand, and if Benjamin is stable we're planning on sending him back to school one day a week. We were at Target the other day and he ran up to the Back To School section and started checking out the crayons and everything. He seemed so excited about getting ready for school, so when he asks if he can go back we've been telling him yes, as long as he's feeling up to it. We ran into Benjamin's reading and math teacher, Mrs. Boucher, while we were there and she was so happy to hear that Benjamin may be coming back. It does feel good to hope for that!

On Friday Benjamin's friend Rochelle came over for a visit, and the kids played hard all day! They played inside for some time and then outside on the swingset and in the sprinklers and the pool. They were having such a good time together that they didn't want it to end. Rochelle and her Mom, Lisa, invited Benjamin to come back to their house to spend the night, and he was thrilled to go! They called the next morning to see if it was alright for Benjamin to stay another night and go to Rochelle's grandpa's birthday party that night. Benjamin had the greatest time at the party - sparklers and tractor rides, etc... it was just a really wonderful weekend for the two kids to have together! It couldn't have come at a better time, too, because before Benjamin left on Friday evening he asked me a few questions that while I can't write them here, (they are very intensely painful to hear and think about) it gave us a clearer picture of the kinds of worries Benjamin has been having. The stress of all of this is really affecting him emotionally - we had noticed that his sleep has been so restless lately, and before relapse he slept like a rock. He's not clinically depressed, but he is showing a few signs of depression. Benjamin has always been the type of kid that gets very anxious of upcoming things that scare him, and he just wants to get them over with as quickly as possible. The pressure of knowing that he is sick and that he is going to get worse and eventually die is just enormous, and he basically told us that he's ready to go be with God, now. We talked with him about all of this and we've talked to his nurses, Tina and Suzanne. We've also had a conversation with the child psychologist who visited with Benjamin when he was admitted during treatment times. We've got plans underway for more conversations for Benjamin to have with them, as well, to see if everyone working together can try to ease some of Benjamin's anxiety. We told Benjamin that we can only imagine how hard this must be for him to think about, but we're just so glad that we have this time with him right now. Tammy, the child psychologist suggested asking Benjamin what kinds of activities might help him feel like he's enjoying his time that he has now, and Benjamin came up with some great ideas right away. He wants to go to Ashtabula - which we're planning on doing in two weeks, he wants to go to the zoo - and we're fortunate to be living about 30 minutes from the Columbus Zoo, he wants to also visit Chuck-E-Cheese and Magic Mountain some more, too. When I asked him where he'd like to go and what he'd like to do to try to enjoy every minute I expected to hear big extravagant ideas like Disney or things like that. It is very touching to me that all of the things he picked that mean the most to him are seeing his family in Ashtabula and simple kid outings that before we always just took for granted. He's so little, but he already knows the things that matter most. Needess to say, this past week has been alot harder on all of us, most especially Benjamin, but he's perked around quite a bit since his big weekend out with his friend. We're just so happy and grateful to the Tedrow's for giving him a weekend to think about nothing else other than being a kid.

This weekend we're all looking forward to a visit from Uncle Chris, Aunt Adria and cousin Ashton! The boys have been talking about it all week!

Not too much else is new here. Zachary finally made it to the doctor yesterday for his two year check-up. We'd had an appointment scheduled closer to his birthday, but that was around the time that Benjamin relapsed so we waited for things to settle down a bit. He's weighs 29 lbs. and is 35 inches tall - he's a big guy! We always joke that he's built like a linebacker, and he'll come running at you like he means business. He's doing pretty well with all the upheaval that has gone on around here lately. I still really worry about him for how he will do when things do change. He calls Benjamin "my Benny" or "my brudder" (for brother) and he's so attached to Benjamin. When Benjamin went out the other day he made me wait out on the front porch with him for Benjamin to come home. Every time I asked him if he wanted to go in he said, "no, I stay outside and wait for Benny!" He's keeping himself busy, though, watching all the building going on around us here in the neighborhood - free entertainment - haha!

Thank you for checking in on Benjamin, and if you could, please say a little prayer for Benjamin's mind to feel more at peace and not so worried. Thank you so much!!!

Love, The Jones Family

Wednesday, July 7, 2004 2:25 PM CDT

Hi everyone!

We hope you all had a great holiday weekend! We had a busy and wonderful weekend, and Benjamin continues to be feeling very well.

On Friday Benjamin had a play day with his friends, Hannah and Buddy Cannell. The kids ran around all afternoon out back, in and out of the sprinklers and the little pool. It was a beautiful day and the kids had a ball playing inside and outside together. They brought over SpiderMan popsicles for all to enjoy, and I wish we had a picture of Hannah, Buddy, Benjamin and Zachary as they sat on the front step eating their popsicles. The popsicles are blue and red, and by the time they all finished they looked like they were wearing clown make-up -haha!

Benjamin finally got to see the new SpiderMan movie on Saturday, and he just loved it. He liked it even better than the first one. While he was out at the movies his art teacher, Mrs. Sheridan, called to see if Benjamin would like to go with her to pick up Gizmo. During the school year we got to a point where Benjamin had to take a rest each day after lunch, and he had his rest time in the art room with Mrs. Sheridan. He loved hanging out in there and visiting with her. Benjamin really loves making art projects and they have made many beautiful projects together. One week during the year Benjamin had company in Mrs. Sheridan's office at naptime from Gizmo - the parrot belonging to another teacher, Mrs. Boham. Every day Benjamin came home from school with lots of stories about playing with Gizmo and about how he was trying to teach the bird to say more words. At the end of the school year Mrs. Boham brought Gizmo down to visit in Benjamin's classroom on a day when I brought Benjamin in for a visit. Benjamin was so pleased to show the kids how Gizmo was his friend, how he could feed the bird grapes, and that Gizmo liked to sit perched on top of Benjamin's head (we have great pictures of that!!!) Needless to say Benjamin was thrilled to jump at the offer to go with Mrs. Sheridan this past Sunday to pick up Gizmo. The two of them went over to Tussing Elementary to pick up the clay sculptures they had worked on over at our house several weeks ago. Benjamin had painted his sculptures and Mrs. Sheridan had "baked" them, and they were ready to take home. After that they went over to the Boham's to visit and pick up Gizmo. They even went out to dinner together at Wendy's - Benjamin thinks it is so cool to go out on these adventures all on his own!! He had such a great afternoon with Mrs. Sheridan and is looking forward to maybe visiting Gizmo again this week.

On Sunday, the 4th, Benjamin was supposed to be in the parade here in Pickerington to march with his friends from Cub Scouts. Unfortunately while it was a pretty day here in Pickerington, it was also really warm and humid. Benjamin doesn't really tolerate the heat very well again. He did fine last summer when were in Florida on his Wish Trip, but since his relapse he doesn't like to be out in the hot sun for too long. We waited out the day, hoping for an afternoon rain shower to possible break the heat, but that didn't happen. Finally we had to make the call to skip the parade, and Benjamin handled it just fine. Instead of going down to the fireworks we thought maybe we would run to Kroger, pick up snacks and S'more fixings, and come back to our house to watch the fireworks. We weren't sure how much we'd be able to see, but we noticed that people who have lived in the neighborhood much longer than we have were confidently setting out their lawn chairs so we decided to chance it. We had such a pleasant surprise in that from our back deck we could see the fireworks from the nearby towns of Canal Winchester and Groveport, and from the front of the house we had front row seats to a beautiful fireworks display here in Pickerinton. Brian and I quickly decided that we'd made the right call when the boys became bored 5 - 10 minutes into the show and wanted to go inside - haha!! It was a really nice end to the day, though, to see such a pretty display.

The capper to a wonderful past few days came yesterday morning when the guys came to set up Benjamin's new swingset. A couple weeks ago Brian was invited out to lunch by some very close friends that he has worked with and stayed good friends with over the years. They presented him with a check made up from donations from many, many sweet people who also work for the State of Ohio and have heard of Benjamin's situation. Their wish was for us to use this gift of money for anything Benjamin might need or want. We asked Benjamin what he would wish to do if he had the chance - would he want to go somewhere he's never been or buy something very special - and he immediately smiled and said "I'd like a swingset!!" Benjamin went out with his Daddy and his Uncle Willie and they picked out the neatest swingset with this very generous gift. It has a gang plank for Zachary to walk up, a ladder to the second level fort, a big slide, a teeter-totter, and room for three swings. The kids have been counting down the days to delivery day, and yesterday was the BIG day! When the guys backed the truck down the hill of the empty lot next door we all had a glimpse out the window of a giant PINK playhouse moving past. The look on Benjamin's face was priceless as he took off running to the window saying "what the heck?!" My Mom was outside talking to the guys so she came in and explained that the playhouse was for their next delivery, but we all got a charge out of teasing Benjamin that the pink playhouse was his - haha! Zachary didn't care a bit about the house being pink - he asked "is dat my new house?" The boys could hardly contain themselves during the hour or so that it took to set up the swingset (which Brian was relieved they handled for him - he had visions of it taking days for him to put it together - hehe!) It was like the starting gun of a race went off as the two boys ran to the swings as soon as the guys were finished, and they played and played yesterday! They had so much fun with it and we are all so grateful for and so overwhelmed at the generosity of so many who wanted to do something special for Benjamin - thank you so much to all those friends from the Department of Development, the Auditor of State's Office and the Department of Education (where Brian works now) for all the kind thoughts, all the prayers for Benjamin and our family, and for the incredibly generous gift you gave to Benjamin. You truly succeeded in making him so happy!!! We will be posting pictures of Benjamin and Zachary playing on the new swingset so you are able to see how much they love it!! Thank you so very much!!

As I said at the beginning of the entry Benjamin is feeling great and really seems no different than he's been. We had a few nights in a row when he was having pains in his arm one night and in his leg the next night, and while they didn't last for a very long time, they did last longer than what they have in the past. One of the nights he also needed morphine which has only happened one other time since his relapse. Thankfully, though, the morphine worked and he was able to finish out the night with a good night of sleep. It has been several days now since then so we're hopeful that these pains were due to playing harder than usual. It is so hard to tell, but we'll look to the positive for as long as we can. He enjoyed a fun day out with his physical therapist from Children's. Kathy and her children Austin and Jessica came to pick him up this morning. They went to one of the kids' favorite places - Magic Mountain - and they had a ball playing games and playing putt-putt outside. Afterwards they stopped for lunch and ice cream sundaes at McDonald's!! He had so much fun and we're so thankful that they thought of him and wanted to have a fun afternoon with him. Plans are in the works for another play day soon and hopefully a trip to Austin's house, too. Benjamin is so excited for that!!

Thank you for checking back in on Benjamin and for keeping him in your prayers. We are really enjoying all the guestbook messages, too! It is so fun to hear from people from all over!

Happy Birthday to Greg today!!!! We hope you have a great day!!!

Love, The Jones Family

Friday, July 2, 2004 10:21 AM CDT

Hi everyone!

Thank you all for checking in on Benjamin and for sending such great messages in his guestbook - we all get a kick of reading the notes from so many friends, both old friends and new friends, from all over.

Last night Benjamin kicked off the start of his fun holiday weekend. Brian decided to take today off and the two of them slept out in a tent in the backyard. They went camping a few times last summer and really enjoyed themselves. This was the first time they camped out here at the new house, and they were a little curious about what kind of critters might keep them company. We don't live in the "country," but we're the last street in our subdivision (and the subdivision is out just a little ways from town) and we back up to a farm. It is so peaceful in the evenings and in the mornings to listen to the sounds of crickets and birds, etc... and Brian said it was so nice to listen to the sounds as they fell asleep. Before the corn field sprouted up we used to see deer running through the field quite often, and there was a little family of raccoons that came out to play every day. The boys thought it was so neat to watch the three babies running and tumbling along together each afternoon. We've also had the pleasure of the visit from one skunk who decided to come right up on the front porch. Aunt Kate was the one who discovered that little guy - needless to say we shut the windows out front very quickly!! After Brian got the tent set up last night he came in to get Benjamin and told us that he had seen one little raccoon out in the neighbors yard, but the little guy took off towards the field. They did see the raccoon one other time last night, but it didn't come anywhere near their tent, and they were zipped in by then. Brian just made sure to warn Benjamin not to freak out if they did see the skunk or else they would be bathing in tomato juice for awhile - haha! I know they slept well because I could hear Brian snoring from inside the house.

Today Benjamin and his brother have a play date with Buddy and Hannah Cannell - this is their second one this week. They had so much fun playing together on Wed. that we made plans for another day this afternoon. They're planning on running around in the sprinkler and playing outside - it is a beautiful day here, a little on the warm side, but that should feel great while running around all wet. The boys also had a play date yesterday with Suzanne (Benjamin's nurse) and her little girl, Kelly. Zachary and Kelly are both two and Zachary has announced that she's his girlfriend. He has three girlfriends now he says :Kelly, Hannah, and Cara (from J5 at Children's). The kids had a great time playing and painting together. Suzanne brought over some paints from ChildLife and they made lots of artwork.

On Sunday our little town has a really nice festival with rides and food and even a parade, and Benjamin's Cub Scout pack will be marching in the parade! We're hopeful that it won't be too hot on Sun., but you never can tell with July weather. Fortunately the festival kicks off at 4:30pm, I think, and the parade isn't until 6:00pm so at least that isn't during the hottest part of the day. Then later on in the evening at 10:00pm they get the fireworks started. We'll see how tired Benjamin is after his big afternoon whether we'll stay for the fireworks. We might be able to see them from our house, maybe, if he's really tired I don't think he would be too disappointed anyway. I can't wait to watch him marching along with his buddies, wearing his little Cub Scout uniform!!

Somewhere along the lines Benjamin is also planning to go see the new SpiderMan movie too. His Daddy also has Monday off so that will be a nice long weekend for all of us. We're looking forward to picnicking, playing outside and spending time together. Benjamin feels great and still has lots of energy. We really havn't noticed any other changes, and we're praying that it stays that way for as long as possible. He's pretty upbeat and happy-go-lucky as usual. He gets down every once and while, but those times don't last long and we keep moving ahead. After we noticed some changes last week it was harder for Brian and me to sleep - lots of nights of watching Nick-at-Nite and late-night movies. Falling asleep isn't what is so hard - it is waking up in the middle of the night and not being able to go back to sleep. I don't know if it is the same for other parents whose children are going through this, but for me I wake up and for a few seconds everything is OK, and then it is like remembering all over again. Last week was a kind of wake up call, I guess, and it made us wonder what would happen next and when. It is really difficult not to get bogged down in the sadness and the worry, the feeling of terror when I "remember" what is really happening to Benjamin is indescribable, but there is just no way to function while in that feeling. We don't want to spend this time wasting it away, and honestly, once Benjamin wakes up and comes downstairs those feelings quickly fade away. You just cannot be down when you're around Benjamin - that grin will pull you right back up again!!! Even though we noticed some subtle changes, just seeing that things settled right back down again and Benjamin is still his same little self was so reassuring. He's not letting this get him down and he's packing each week full of so many fun things to do with his family and his friends. He really has the right attitude!! I'll update more next week and fill you in on how the holiday weekend and the parade went.

We hope you all have a wonderful and safe Fourth of July!!! Thank you for your continued prayers for out little guy!!

Love, The Jones Family

Monday, June 28, 2004 10:59 AM CDT

Hi everyone!

Thank you so much to all of you who keep checking back in on Benjamin and for all who have sent messages in his guest book - he just can't get over how many people have been stopping by to see how he's doing. He's still doing just great!! He's feeling good, has lots of energy and is doing all the things he enjoys. Sadly, this past week we did start to see the first signs that all is not right, but we can be thankful that these signs have been very mild and not a constant problem at all. Brian and I had noticed that Benjamin seemed less steady on his feet, and when Nancy (Benjamin's tutor) was here last week she noticed the same thing. She had also noticed that Benjamin's math processing was really off. It had been like that the Thurs. before, but we had hoped that it was just an off day. Unfortunately he was "off" all last week as well. Math is one of Benjamim's favorite subjects, and he does very well with it so this was so disappointing to hear. Nancy didn't say anything to Benjamin, though, so we know he's not frustrated by this anyway. At some point they may have to adjust what activities they work on together if Benjamin does become frustrated, but Nancy is ready and willing to do any activity with Benjamin if it comes to that. Also last week we noticed that on a few occasions Benjamin would turn his head to the left and look out the corner of his eyes to the right (peripherally) when he was talking to us or looking at a book. When I asked him if his eyes were bothering him he always answered that he was just tired. Then in the evening he told Brian that when he looked out to the side it seemed like objects were moving. I talked to both Suzanne (Benjamin's nurse since diagnosis)and Tina (his hospice nurse) and they agreed that the collection of symptoms sound like possibly the start of things. The vision disturbances, the increased unsteadiness, the difficulty in processing, and one night he had a headache on the top of his head (this was the location of his headaches prior to his original diagonosis in May 2002) could mean that he's taking a step down. What we don't know (and no one can really knows - every kid is different) is how much further they will progress and how quickly. Tina told us that often times there will be a collection of symptoms, the child takes a step or two "down the ladder" and then plateaus for a time. Then after a bit the child takes another step or two down and plateaus again. As long as his symptoms are this mild then that is our prayer that we can still have as much time as possible. If his symptoms were horrible and very severe then we couldn't hope for long periods of plateaus if he were truly suffering, but as I said the things we noticed last week were very subtle. He can still crush every single one of us at any video game - there is nothing wrong with his coordination!!! He has lots of energy for playing, wrestling, and riding his Green Machine. While it was very sobering to realize that little changes may be happening we're so happy that he's still the same old little Benjamin. Because Benjamin had not been showing any signs for so long (we're coming up on nearly two months since we found out of his relapse) Brian and I had kind of fooled ourselves into hoping that maybe this wasn't really happening even though in our hearts we knew better. This was a sad reminder that we're still on the same path.

Benjamin still enjoyed a wonderful week of fun and activities. He visited with Mrs. Brinda a couple times last week, and Nancy brought over the beautiful ceramics that she and Benjamin worked on that she brought back to the store to be "baked". Nancy brought over four different ceramic treasure boxes for Benjamin to paint - a football box for his Daddy, two skateboard boxes for the boys, and a heart shaped box for me. They had quite a time together painting them just the way Benjamin wanted them to look, and then Nancy took them back to the store to be baked. Well, the boxes are done and last week we got to see the finished products - they are so beautiful and they will be treasured! Benjamin always brings back little treats for me if he goes shopping with his Daddy. He stops at the gumball machines and uses his change to buy rings or necklaces for me - never for gum or candy for himself. I have quite a little collection of pretty little trinkets that I'm now going to keep in the treasure box he made for me. That activity was so much fun for Benjamin because he loves doing arts and crafts and the things he made for us are so special to keep forever.

The boys had so much fun playing outside since we've had great weather. We did find that the heat has started to bother Benjamin again, as it did before his original diagnosis. Even in temps in the mid to high 70's Benjamin doesn't last outside for too long - he gets too hot and wants to go inside. He comes in and out, though, and makes the most of his time outside. We played basketball, went for Green Machine rides and did chalk drawings on the sidewalk.

On Saturday Benjamin had a really big day. The four of us went to Magic Mountain for the afternoon and the boys had a great time. Zachary just likes to ride in the cars, and Benjamin loves to collect more tickets to pick out prizes. He had over 1000 tickets (saved up from several visits) and Benjamin picked out a variety of prizes including a velcro dart board, a Ninja Turtle coloring book, lots of candy, more rings for Mommy, and a Dora the Explorer framed picture for his little brother - quite a haul!! Then in the evening on Saturday Brian and Benjamin were off to dinner and then to the production of The Lion King. Benjamin was mesmerized throughout the whole show and really enjoyed every bit of it. They called me at intermission and he said the show was great! His favorite parts were the costumes, Simba and the music - he's always loved the song "I Just Can't Wait to be King." They didn't get home until nearly mid-night, but Benjamin was still bright and fresh and eager to show us the souvenirs he'd conned his Daddy into buying. He got a t-shirt for himself and one for his brother, a souvenir cup, a bean-bag Timon character and some animal crackers. He'd tried to get Brian to buy some $12.00 mints as well, but Brian drew the line - haha!! We really appreciate that Benjamin was given the chance to see this show (tickets were just about impossible to come by) since someone donated the two tickets to Make-A-Wish, and we're so glad that they thought of Benjamin and made the offer to him. Thank you so much!!

Then on Sunday Benjamin had fun visiting with Aunt Kate and Greg. Greg was here for a quick trip after flying in from a week of meetings in New Jersey and then having to fly back out again on Sunday afternoon. He had a great time playing video games, darts, and visiting with them - we're so glad they could come for a visit.

There isn't much planned for this week. Nancy will be over a couple of times for their visits, and Suzanne may stop over as well. Benjamin hasn't had too much interest in going places - he's a real homebody. His Daddy is home for lunch today and offered to take him out to lunch, but Benjamin just wanted to stay home. He says that he feels fine and doesn't feel like anything is different. Sometimes we worry that he won't want to tell us if does notice that he feels different because he already worries that if he has a headache that it means something will happen to him right now. He's pretty easy to read, though. Benjamin is almost always cheerful and happy-go-lucky, so when he gets quiet and withdrawn we know that he's doing alot of thinking and worrying. He and his brother have been getting along alot better since Benjamin finally told us some of his worries. The other night they were at it again, and Benjamin wouldn't let Zachary play with him or do anything with him. Later on he said that he still feels sometimes like it is easier to be mad at Zachary than to feel sad about all of this. He also said something that surprised us. He said that he felt a little bit mad at his brother - that it was Zachary's fault that he was sick. We couldn't understand what would make him think that until Benjamin said "I was fine until we had Zachary." The timing of Benjamin's first diagnosis was just three weeks after Zachary was born, and he thought that in some way the two events had to related. We talked and talked about how this was no one's fault, especially not Benjamin's fault. This is just one of those things that happens and no one really knows why. Benjamin understood this and after our talk he crawled into bed beside his brother and rubbed Zachary's forehead while he slept. This is so confusing and hard for an adult to understand so I can't imagine how difficult this must be for Benjamin to comprehend. Like I said before, though, Benjamin doesn't get "down" or dwell for very long on the rough stuff. He just has to get it out, be reassured and comforted and then he goes right back about his business of being a little kid.

We got some great news this morning - Benjamin has a spot for Hem/Onc camp this summer! He went last summer and loved every minute of it. We just found his disposable camera from last summer's camping trip (lost in the move) and the pictures that came back were hilarious. There were a lot of close-up pictures of the little friends he made, lots of pictures of the adult counselors who didn't appear to be ready for their pictures to be taken ( haha ) and in all the pictures of the grown-ups from the eyebrows on up was cut off. There were also a couple of pictures that Benjamin took of himself, and those are my favorites. They are so funny anyway, but the smile on his face is so huge it is obvious that he was loving every minute of his three day trip. Benjamin has graduated from the "little boy" cabin to the "big boy" cabin and will be with Dr. Fangasaro. The camp is run by all the doctors, nurses and their spouses from the Hem/Onc clinic and J5. We felt very safe to send Benjamin off on his first solo camping experience with all the people that had cared for him throughout his entire treatment. This year's camp date is the first weekend in August and we're so hopeful that this is something that Benjamin will be able to do. As far as he's concerned, he is going, and we're completely going along with that for him. This is something really great for him to look forward to and hopefully things will be going along well still so that he can attend the camp. Last year he had so much fun doing archery (he even won a little award), spraying silly string at the girls (not because he "liked" them or anything, just because the boys always have to get the girls - haha! We also got the biggest kick out of the appearance of Benjamin's duffle bag when he got home. It didn't look like it had even been opened the whole time he was gone. The new toothpaste hadn't been opened and neither had the soap!! When I asked him about this he claimed that he couldn't find them in the bag. I asked him if he had at least changed his underwear while he was gone, and he grinned and said that yes, he had found the underwear. The majority of his clothes were still folded exactly as I had packed them so I'm not sure how many days he wore the same outfit. We just cracked up at the whole thing!!

Well, that is about all the news from here. Things are still good, and we're praying for lots more of the same!! Thank you for stopping by and for keeping Benjamin in your prayers.

Love, The Jones Family

Sunday, June 20, 2004 7:27 PM CDT

Hi everyone!

***UPDATE Mon. morning: I updated in the evening last night, and I forgot to mention a couple of the other special things Benjamin did last week - oops!!! Benjamin had a visit from his first grade teacher, Mrs. Fortenbacher, and they visited here at the house for awhile and then Benjamin took her out to lunch at McDonald's - she drove though - haha! It was a beautiful day so they were able to sit outside to eat, and when they finished eating they made some birds very happy by feeding them the rest of their french fries. Mrs. Fortenbacher said they had a great chat and that they had a really nice time together. Benjamin thought it was very cool because just the two of them went out to lunch together. He is so independent!! They are planning another get together for this week or next week which Benjamin is really looking forward to.

I also forgot to send out a big Happy Father's Day when I updated yesterday. I was very lucky to spend the day with my Dad and also my Uncle Will who is my Godfather. We didn't get to see him, but Happy Father's Day to Papa Jones, too!!! Benjamin had been planning for weeks the gift he wanted to get for his Daddy, and yesterday he gave his Daddy the DVD Pirates of the Caribbean. The two of them saw the movie together last summer at the drive-in, and they also went on the ride together at Disney World last summer for Benjamin's Wish Trip. Those two times are very important to Benjamin so that makes the DVD really special to him. I'll never forget how Benjamin looked when he came off the Pirate's of the Caribbean ride with his Daddy. I was waiting with Zachie and his stroller, and Brian and Benjamin had been gone forever it seemed like. Well, after Benjamin got off the ride - which he loved - he really wanted to stop in the gift shop, conveniently located at the drop-off point - haha! I looked up and saw Benjamin dressed in a pirate's hat, wearing an eye patch, swinging a big sword and waving a hook-hand at me. He wore that get-up the whole rest of the day through the park, and he still loves to put it on. The hat came in very handy for Treasure Hunt day at his school a few weeks ago, too!***

Hope you all had a great week! We're so happy to tell you that Benjamin sailed through another week - and it was a very special one. Benjamin and Zachary had a very special visit from my Aunt and Uncle from Massachusetts. They drove all the way out to spend some time with all of us, and we all had so much fun! Benjamin wrestled with Uncle Will and played lots of video games, and he and Aunt Genny had lots of fun playing pinball, too. The best part for Benjamin was that he went back to their hotel with them each night for sleep-overs! We were so happy that he could have this extra time to visit with them!! He had a ball playing, watching cartoons, and eating at the continental breakfasts. As kids we always had the best time staying at their house so it is so special that he got to have that one-on-one time with them as well. We're really going to miss them as they head back home.

Early on in the week we received a wonderful call from one of the volunteers from Make-a-Wish offering two tickets to the production of The Lion King here in Columbus! Benjamin is excited beyond words!!! The tickets are for next Sat. evening and he's already counting the days. The tickets are nearly impossible to come by so we are so grateful for the kind people who donated the tickets. From what we have heard the performance is just unbelievable - the characters even come out into the audience and go up and down the aisles. This is going to be such an exciting night for Benjamin, and we're so thankful that he's been given this chance.

Benjamin had quite a busy week with "Mrs. Brinda time" as the kids call it. They have become great friends and he really looks forward to their twice a week get togethers. Benjamin also had a visit from his good friend Hannah Cannell. We had hoped to play outside and go in the sprinklers, but off and on rain showers changed that plan. They played lots of video games, though, and when we had a break in the weather they had a lot of fun playing ball outside and riding Benjamin's Green Machine up and down the street. This next week is a busy one, too, with lots of visits from friends and family. My parents have been staying with us and taking great care of all of us!! My sister and Greg are visiting next weekend and we're looking forward to getting together with more of the family from Ashtabula very soon!! We have really been so lucky through all of this to have the family we have - everyone has been so supportive and spent alot of wonderful times with the boys.

The reality of Benjamin's condition seems to be settling in bit by bit with him. He's still looking and feeling just great which is such a blessing!!! We're just praying for many, many more days like he's been having. He really doesn't dwell on the hard news, but it does catch up from time to time. He's most concerned about his little brother, and they have had off and on rough patches this last week. Benjamin would get really agitated with Zachary over pretty harmless incidents. Finally one night he got in bed with Zachary and just held him and cried. He said that it is just easier sometimes to be mad at Zachary instead of feeling so sad because he's going to miss him. Benjamin was comforted, though, when he knew that no matter what they would always be brothers and that they would definitely recognize each other in Heaven. After he lets it all out and is able to be reassured by us he goes right to sleep, and sleeps like a baby, so we're praying that it means he isn't upset still or else he would probably be more restless. Tonight the four of us took a ride over to Wal-Mart and on the way there Brian was talking about cars and what kind of car we would look for way down the road when it is time for a new vehicle. Benjamin piped up right away with "I want you to save Mommy's car for me so I can drive it when I grow...up..., I mean,...nevermind." I turned around in my seat and asked him if he was alright because he had gotten really quiet and he said "I can't have the car because I'm going to die." He said it very sadly and very matter of factly, and it was all we could do not to cry. We spent the rest of the car trip talking about how no one knows when they're going to die and that, of course, we understand that he feels sad about all this, and we all do, but the best thing we can do is just focus on enjoying each day and trying not worry about the "when." He's become more concerned each time he's needed Tylenol for bone pain - which really hasn't been very often at all, and it has really mostly been on days when he's played really hard. He finally opened up about this and told us that when the bone pain happens he's afraid that it means he's dying right now. He seems to feel better when we tell him that this is not true and that this isn't something that will happen suddenly. Like I said, it doesn't seem to be something he dwells on for long. He really just gets out whatever he's worried about or what questions he has, and then after he's been reassured he goes right back to being his happy-go-lucky little self. Honestly, about 95f his time is spent just purely being a happy little boy who is still doing everything he wants to do. The roughest times for him are right before bedtime when the house is quiet and there really isn't anything to focus on except your own thoughts. Cuddling in with one of us seems to be the magic medicine for chasing away the scary thoughts so I think his young age is really a blessing for him.

The weather is supposed to be beautiful for the next few days so we're hoping to gets lots of outside playing time. The boys had a great time getting to really play out back this afternoon. Our new sod has taken and we've passed the time limit for how long we're supposed to stay off the new grass. They ran around all afternoon and tired themselves out. Benjamin rode his Green Machine up and down the street for awhile tonight and the smile that lit up his face was so sweet and innocent and still genuinely happy. So much has been taken away from him, but he still can be happy with such simple pleasures like riding a bike. Thank you so much for checking in on him and for leaving messages in his guestbook - we really appreciate all the love and support from all over!! We're praying for another good week here and for all of you, as well!!

Love, The Jones Family

Sunday, June 13, 2004 11:40 AM CDT

Hi everyone!

We were blessed with another pain-free, fun-filled week with Benjamin! His energy continues to remain high and his spirits are quite good. As I said in our last entry, Benjamin does know now there will not be a cure for him, and he has accepted this news with a quiet grace and a will to keep doing all the things he likes to do for as long as he can. He is truly handling this all much better than us grown-ups - the innocence of being a child, I guess. He has had many questions and is becoming quite open in discussing his fears with us. So far our answers seem to have reassured him and he remains his happy-go-lucky little self. I won't go into alot of detail about our discussions because he is still a private little guy, but his main concerns are about how long will it be until he sees us and especially his little brother. We've told him that time in heaven is different than time here on earth, and that for him it won't feel long at all. He takes great comfort in looking at pictures of family members who will be waiting for him to care for him until we're all together again. The other day he asked me how many relatives will be looking for him and I tried to explain just how big our family is. He asked if it will be like a big family reunion, and I told him that it will be very much like that. He had me laughing next when he said that it will just seem like I dropped him off at the door for the reunion and will be back when I park the car. This seemed to make him feel so good, so I said I bet it will only feel like that short a time until I see him. Then he told me that he will be at the dessert table so we can meet him there. These conversations are extremely painful, but at the same time comforting for Brian and me. In the beginning we were horrified at the thought of having to tell Benjamin that he was never going to get better, but now that he knows we all seem to have a sense of relief. He has even said that he is glad he asked and is glad that he knows. For us it is a blessing to know that we can answer his questions and help ease his fears. We let him ask his own questions, in his own time, and by the time he asked the big question he really already knew the answer, but he was ready to hear it.

Benjamin completed a very important milestone this past week - he finished the first grade!! This was so important to him, and he did it. He visited his classmates each of the last three days of school last week and enjoyed some fun activities with his friends. He went to the treasure hunt - and he proudly walked into the school wearing his pirate hat! He had time to just visit with the kids and play just like always. He also worked with Nancy here at home and on Thurs. he had his last official day as a first grader. He and Nancy have such a good time working together that they are going to continue through the summer meeting twice a week, sometimes at our house and sometimes at Nancy's house. Nancy asked him what kinds of things he'd like to work on this summer, thinking that he would say games outside or things like that, and he told her he wanted to do math and the "cat papers" (these are reading papers that are about a cat). They're planning to do math, cat papers and lots of little art project as well. Benjamin's hospice nurse, Tina, said that some activities may have to be adjusted if he becomes frustrated easily due to progression of the tumors, but for now anyway he has no limits. We just pray that this continues for as long as possible.

It has been a little over a month since we found out about Benjamin's relapse and the probable amount of time he has left. We try not to focus on that time line and to just enjoy each day. The days do feel like they're going by faster and faster, though. I wish we could freeze time or at least slow it down. The hardest things seem to be making him go to bed at the end of each day and disciplining him. Bedtime is such a reminder that another day is done, and as I said, they're going by too quickly. This is also the time of day when Benjamin often opens up and asks his questions - when he is snuggled in bed next to one of us. We're lucky that Benjamin is such a good kid who usually does just what he's told, but he's not perfect either - haha! - and since he does feel so good he does still have times when he acts up. When he and his brother are tearing around the house, running and yelling and screaming it is hard to tell him to settle down. We know he has to take it easy, but there's another part of me that wants to see and hear him doing these things anyway. Just when he leaves for the afternoon to go to a Cub Scout activity or something it is way too quiet around here, and I miss the commotion. We're just taking things bit by bit and trying to get through as best we can.

Zachary is only two, but we can tell that he knows something is up around here. He and his brother are extremely close, and sometimes I'm not sure who I'm more worried about with what is to come. There is alot of activity swirling around Benjamin, and we don't think Zachary is jealous of it, but more worried about what is going on. More and more frequently he has started asking questions like "Benny sick?" "Benny have a heg-ache (headache)?" "you feel OK Benny?" He also wants so badly to be a part of whatever Benjamin is doing. When Tina was here last week to check on Benjamin we talked about it with her and she said that it is normal for someone of his age to react like this to what is going on. He's too young to understand what is wrong, but he definitely knows something is wrong. Tina brought Zachary in on Benjamin's check-up and listened to his heartbeat too and asked him lots of questions and listened to what he had to say. We really appreciated this, especially after Zachary had asked her earlier to "get back in car and go home - I'll give you five dollars!" While the story is really humorous now, I would have liked to have melted into the carpet when that sentence came out of his mouth - haha! Even with all that is happening to him, Benjamin still has a lot of concern for his little brother. I can't even write some of the questions he has asked and things he has said, but it is amazing to us that he is thinking of others when he is dealing with his illness. He has started setting aside things for his brother and even given me instructions on toys he wants to give to Zachary. Benjamin is so incredibly and quietly brave, it is mind blowing.

Tonight Benjamin and his Daddy have big plans to go to WWE Wrestling here in town. A Pay Per View special is happening in Columbus and Brian got tickets for the two of them. Benjamin is so funny about his wrestling! He knows that it's fake, but he still gets so excited and wrapped up in it. He can tell you the names of all the wrestlers and the names of all the special moves. He's been looking forward to this for weeks so we're hoping it is a special night for him.

Other than that, not too much is new here. Next weekend my Aunt and Uncle from Massachusetts are coming for a visit and we're all really excited to see them! They are alot of fun and they play all the same games with the boys that they played with me and my sister when we were kids. I'll update more on the latest adventures of Benjamin in a few days. Thank you all so much for checking in on Benjamin and for leaving such great messages for him and for the family! It really gives us all a boost to know that Benjamin is loved and prayed for by so many!!!

Love, The Jones Family

Monday, June 7, 2004 1:45 PM CDT

Hi everyone! ***New Pictures***

Hope it was a great weekend for you all! Benjamin had a very busy one, and he continues to feel great. Benjamin had a lot of fun catching up with Aunt Kate - he had a new "victim" to play video games with. He had her cornered in the playroom for much of her visit.

Benjamin had his Green Machine out this weekend, and we went for lots of walks around the neighborhood. My Aunt and Uncle gave it to him last year and it has been perfect for him. Benjamin can't ride a bike without training wheels, and even though he doesn't say much about it I think he's a little bit embarrassed to have the training wheels. His balance improved quite a bit over the past year, but not for bike riding. The Green Machine is great, though, because it is low to the ground and has the two wheels in back and a big wheel up front. He doesn't have to feel self-conscious at all. He gets quite a bit of attention when he's riding it, too. The kids are really interested in it and the adults get a wave of nostalgia for the "old days." It is great exercise for him, and he did alot of riding around and still kept up his energy.

On Saturday Benjamin attended his Cub Scouts Jamboree which was an all day event. We didn't figure that he would last more a couple hours but he stayed for most of the day. He had so much fun too! On the ride over he told his Daddy that he feels so good wearing his new uniform - Benjamin's pack had their crossing over ceremony a week or two ago, and he is now a Wolf Cub. He has a new blue shirt (with all of his patches sewn on - big thanks to Gramma Beebe!!), a Wolf Cub hat and his neckerchief. He looks so handsome in his uniform and he feels so proud. We have new pictures of him on the photo page if you'd like to take a look. Anyway, Benjamin and his Daddy spent the afternoon running around outside, fishing, racing, etc...Benjamin was wiped out when he first got home, but after a short rest he perked right back up again and played some more with Aunt Kate.

This is Benjamin's last week of school and we're going to try to get him over there each day - they go until Wed. Benjamin went over this morning to paint his clay sculptures with his art teacher, Mrs. Sheridan. The pieces came out so cute - he made a dragon, a Cookie Monster - it is so cute, he painted it blue and even made the googly eyes!(for his brother), a beautiful bird, and a chocolate doughnut which he says is for Mommy - he knows how I love chocolate!! Mrs. Sheridan is going to bake the pieces again and then we can have them at home. The plan had been for me to pick him up after an hour or so, but before I left he let me know that he was going to stay for lunch and they would call me when he wanted to come home! I cracked up! He ended up staying and having a great day. There were a couple of birthdays in his class today, he went to recess with his friends, and he got to hang out in the art room for a long time - which he loves to do!

Tomorrow we're headed back to school early in the day because his class is having a treasure hunt, and he's really looking forward to that. There is a gap of a few hours between the treasure hunt and a class pizza party, so he will probably come home for awhile and then go back for the party. He's also got tutoring with Nancy too, and he always enjoys their time together so much. They played baseball together last week and they make up different games to play inside to make the learning even more fun. On Wed. is the last school assembley of the year so we're going to get over to school for that, and then maybe he can visit with the kids for awhile after that. Then in the afternoon he's going to have APE at home with his teacher Mr. Bravard. They have had a ball together the past few weeks playing games like volleyball, darts and casting the fishing line off our back deck. I'm not sure what is in the plans for this week, but they will certainly have fun. On Wed. Benjamin and Zachary are also having a visit from Benjamin's nurse Suzanne and her little girl Kelly. The kids had fun playing with Little People and playing inside together last time. On Thurs. Benjamin's hospice nurse Tina is stopping by to check on Benjamin, change his dressing for the PICC line, and also for some fun activities that Children's Hospice encourages. We're going to do some memory making - handprints, painting, etc...all things Benjamin likes to do. Finally on Friday we may go to Movies in the Park which is a really fun thing here in Pickerington. They show movies outside on the back of a big white barn - this week is Daddy Daycare - a Benjamin favorite!! I'm exhausted already, but it sounds like a week packed full of fun!

Benjamin still feels really well which we are so thankful for! He hasn't had pain in days and he's had lots of energy for his many outings. The toughest part to deal with yet has been Benjamin's realization of what is to come. He finally asked the "big question" last night, and he now understands everything. He is handling all of this so much better than we are, that's for sure. He had some worries and things he wanted to talk out, but overall he seems very at peace with things. His attitude is that he is just going to keep doing all the things he likes to do. We had talked about how we wanted to answer his questions about death when the time came that he was ready to ask, and even though he caught us by surprise last night he seemed to accept the direction we're headed in. At first he had such a look of defeat in his eyes that was almost unbearable to see, but he has the most amazing attitude and will to keep going on. Our conversations were both heart-wrenching and in some ways a relief. It is now out in the open and we can keep moving forward doing everything we can to make him feel safe and loved. He has told me several times now that he is glad that he asked and that he feels much better now that he knows. I think he has really known since our conversation last weekend (in one of our recent updates I wrote about how he asked when he would have his surgery so he could go to second grade), but he wasn't ready to say it out loud yet. The best way to sum up his attitude is something he said this morning. At first he said that he didn't want to go to school today - he was still feeling sad from our talk the night before. I asked him again awhile later if he wanted to go to school today and he perked up and said "yeah, I've got a lot of things I need to do." He's not going to let this stop him from doing all the things he likes to do, so we're going to keep taking our cues from him.

Thank you for checking in on Benjamin and for keeping him in your prayers. We appreciate all the love and support that is being sent his way!!

Love, The Jones Family

Thursday, June 3, 2004 10:34 AM CDT

Hi everyone!

**Update June 6th - New pictures posted

Hope you all had a nice holiday weekend!! Thank you so much for the continued prayers and support for our family during this very difficult time. We really enjoy all the guestbook messages and e-mails - Benjamin is thrilled to hear from so many friends!

We had a very nice weekend with Gramma and Papa Jones who came down from Ashtabula for a visit. Benjamin took turns cornering them in the playroom to play video games. He is a very tough competitor!! He and Papa also went on a run to catch the ice cream man - they got him!! I went out with my car to catch up to them to give them a ride home, but Benjamin wanted to walk and chat with Papa. Brian and I took this opportunity to get the apartment cleaned out as our lease was up at the end of May. The kids were happy to stay at the house while we got some things done. It was really heartwrenching to get the last things out of the apartment. There were little toys and things of Benjamin's everywhere and the thought kept running through my mind that when we left the apartment things were fine (or so we thought) and we had such high hopes for starting over in the new house. This was going to be our new beginning, but I guess that wasn't to be. We thought we would be leaving behind the rough times from treatment at the old house, but now we're starting down a whole new road. I can't imagine how hard it is going to be later if finding things of Benjamin's was that hard last weekend. So many things of his do make me smile and laugh, though. We found little stories he wrote at school and lots of pictures that he drew. They were so cute and will now be treasured even more.

Benjamin has enjoyed another good week so far. He has been pain-free and feeling good. It is so unbelievable that something awful is growing inside him when there isn't much sign of it from the outside. Thank God, though, that he is feeling as great as he does!! Sometimes I let my mind think maybe this is all just a big mistake, but that is just magical thinking - we know his scans have been checked and re-checked by many doctors and the verdict is the same. While the news has been so hard to hear we know that we chose the most aggressive treatment for him at every step of the way so at least we don't feel the "what-ifs" - Benjamin had the highest amount of radiation, the highest doses of chemo he could tolerate and his surgeon removed every bit of tumor that could be seen and reached. It is still heartbreaking, but we know that his little body has taken all it can take.

Gramma Beebe came back down on Tues. so she is back in the "ring" with Benjamin and his wrestling video games. We've had a good week of visiting with Mrs. Brinda and even a little visit to school yesterday. We went over for library time and recess and Benjamin had a great time catching up with his friends. As Benjamin walked into his classroom a big cheer went out from the kids! They were just as happy to see him. Benjamin had a big time playing basketball at recess and running all over with the kids. He was tired, though, by the time recess was over. He perked up by the time Mrs. Brinda arrived at our house, and he worked for nearly two hours solid. Mrs. Brinda always offers plenty of breaks, but Benjamin never takes her up on them. His favorite part of school-time yesterday was when the two of them went outside to play a game while learning spelling words. Mrs. Brinda pitched a ball for Benjamin to hit for each word spelled correctly! Benjamin loves to play baseball so this was a treat. She always comes up with different and fun ideas to make learning fun and Benjamin loves it!

Next week we have a few trips to school planned. It is the last week of school for Pickerington so we're going to try to get him over there at least for a short time each day if possible. On Monday I'm going to drop him off at 9:00am like a regular day and he's going to have gym class with the kids and then go down to the art room with Mrs. Sheridan to paint the sculptures he made with her when she came over to the house for a visit. He's very excited about this! It is going to be so strange to drop him off out front again - the last time I did that was the day before his MRI when we found out the terrible news. I always loved our little routine in the morning. As we'd pull up to the entrance of the school Benjamin would unbuckle, give Zachary his kiss and then lean forward and give me a kiss. If Benjamin ever forgot to kiss his baby brother I'd hear about it all day from Zachary - haha! Then Benjamin would hop out, struggle to get his big back-pack up around his shoulders, slam the door and give us a big smile and a wave. That last Tues. I never imagined that I wouldn't get to do that again - I miss that already!! The plan for now is to drop him off on Mon. and I'll come back in a couple hours to get him. I'm so glad that he's going to get another opportunity for a "normal" school morning, but the thought of letting out of my sight for awhile is very hard. I know he is going to have a ball, though! The people at his school are so wonderful and they have gone above and beyond to take special care of him - even before the relapse.

On Tues. Benjamin is going to school for the last school assembley and his class is also having a treasure hunt and a pizza party. Benjamin has always loved pirates and treasure hunts so I'm sure this will be so much fun for all the kids. I'm not sure what the plans are for Wed., but since it is the last day of school we'd really like to get him over there at least for a short time. He will still get to see a few of the kids over the summer, but most he will not. The other night he told me that he needed to have his surgery so he can go to second grade. We had talked before about there not being a surgery, but I guess it hadn't really sunk in yet. He and I talked about how we couldn't do surgery because they can't get to the tumor (the first tumor could be reached, but the second one is actually too deep), and that he has had all the radiation that he can have, and the chemo will make him too sick. He cried and told me that he can do it and that he wants to start chemo. This was by far the most difficult conversation we've ever had. I just held him and told him that we just can't do any of those things and that this just isn't going to go away or get better. I kept waiting for him to ask the big question, but his mind still hasn't gone there. I told him that none of ever know what is going to happen to us - we never know when we might get sick or how our lives will be so we have to try to put that part out of our minds and just do all the things we like to do every day. I asked him several times if he was afraid or had any questions - any questions - but he said that he just really wanted to know about if he would have surgery. We're leaving the door open though for whatever he wants to know. I told him that when I'm scared I just say a little prayer or just "talk" to God, and sometimes I just talk to my Grandma in heaven. He asked me to tell him stories about her - she died when he was little - so we talked and talked about her and my grandfathers who also died several years ago. The only thing I can think of is that at some point when he does ask the big question then hopefully he won't be as scared if he feels like he knows people will be waiting for him. How do you get a little boy ready for something like this? Our plan is still to let him enjoy each and every day to the fullest and to ease him into this a little bit at a time. He has always told us that he feels better when he asks us about things that worry him, so we feel comfortable in letting him take the lead and ask us questions as they come to him. He is such a happy boy and he goes about his business without a care in the world. He told me that even though his brain tumor isn't going to get better, which makes him a little bit sad, he knows that there are still so many things he can do. That is what we are focusing on right now, and he really can do all the things he's been doing this past year.

Well, this entry is getting longer than I had planned, but sometimes I run on with a thought. Thank you so much for checking in on Benjamin and for keeping him in your prayers!

Love, The Jones Family

Saturday, May 29, 2004 8:43 AM CDT

Hi everyone!

Benjamin had a great week and continues to feel well! He met with our friend, Nancy, for school and as always they had a really good time together. Nancy said that his reading and math are continuing to improve and his energy is still high. The only difference she has noticed is a decline in his handwriting which we knew would be coming.
This could be because of the tumors in his brain or it could be due to a spinal one. We were told that the ones in his spine were so tiny, though, so we're hopeful that those tumors havn't taken off and grown this fast. They told us that the ones in the spine that are in the area of his chest could cause him to have problems with his grip and eventually he could lose the use of his arms. That is why I've been letting him play as many video games as he wants - he LOVES video games and we just pray that he doesn't have problems with his arms to have to lose his games, too. This disease is so ugly in how much it robs people of doing the things they love to do. At this point, though, Benjamin can still beat all of us in any game - and none of us are "letting" him win either - haha! He is very tough to beat.

On Friday he had a very big day. We took another "field trip" over to his school for the school's walk-a-thon. Benjamin's class walked from 11:30 to 12:00pm, and Benjamin went to bed early the night before so he could be rested up. As soon as we walked onto the playground he yelled "awesome!!!" because the school had a DJ out there playing music for all the kids. Kids were either walking out on the track or dancing in the middle of the playground. Benjamin danced a little jig as he made his way to the track, and then he took off running. My parents and Zachary and I walked with his first grade teacher, Mrs. Fortenbacher, but Benjamin kept up his running and even lapped us. In all he ran three laps - I don't know how he did it! He was so excited to see some of his friends and visit for awhile. Unfortunately all the running really took it out of him so we left pretty soon after his class finished up their time outside. We're planning to go back in the next week or so again, though.

After the walk-a-thon we came home so he could rest up a bit and in the afternoon we went over to OSU's Chimp Center to meet Nancy, her husband, both of her daughters and their boyfriends for a private tour of the center and time to spend with Dr. Boyson (the lady who runs the center). First we visited with the babies Emma and Harper. The last time we were there the chimps were in little diapers, and Benjamin thought they were the cutest little ones. Then we went over to see the "big guys" who like to jump up against the glass. Benjamin still thinks it is hysterical that the only person who screamed when the big guy jumped and pounded on the glass was yours truly. Then we went over to watch the older chimp, Bob, show off his reading. The girl leading the demonstration let Benjamin feed grapes to Bob for each right answer. When they were done she let Benjamin ask Bob questions, so Benjamin asked Bob "where are your teeth?" He was thrilled when Bob leaned in to him and pointed out his big teeth! After that we thought the tour was probably about over, but the best part was yet to come. Dr. Boyson brought me and Benjamin over to a special area and came out carrying Emma - one of the baby chimps. She set Emma down next to Benjamin, and I was wondering if he would be scared, but when he saw how gentle Emma is he wasn't afraid one bit. Emma reached right up to Benjamin for him to pick her up, so he did and he carried her around for a bit. Then the two of them sat down on a blanket together. Emma pointed out the scrape Benjamin has on one knee. Then she pointed to her eye (for tears) and then she very bent down and very softly kissed his scrape! It was the sweetest thing! She let Benjamin take her for little rides in her little car - he pushed the car up and down the hallway for her while she sat in the car eating a banana. It was hilarious! Then he helped her take a drink from the drinking fountain. After playing together inside for awhile Dr. Boyson invited us to go outside with Emma, so Benjamin brought her outside to play for awhile. Benjamin, Chuck Brinda, and the guys ran around with Emma playing tag in the yard. Then we sat down to have a little snack. Benjamin helped her with her juice box and gave her some cookies. Sneaky little Emma even got ahold of Zachary's cupcake and took off with it - we all cracked up at that. After Emma got tired she and Benjamin went for a little wagon ride together - they looked adorable in the wagon! Benjamin was so thrilled to be able to have all of this one on one time with little Emma. It was wonderful to watch them together. He told Dr. Boyson that he wants a chimp of his own, and she laughed and asked him if he had $40,000.00. He smiled and said no. Then on the way home he asked his Dad to "direct deposit" his allowance from now on because he's saving up for his own chimp. We cracked up!

He finished up his day with a visit from his very good friend Rochelle. The kids have known each other practically since birth - they were born a couple weeks apart so they don't ever remember a time when they didn't know each other. They played video games and ran around together. Her school lets out after next week so they should have some more playing time once school is done.

This weekend Gramma and Papa Jones are coming down for a visit, so the kids are looking forward to more playmates!! Brian and I are working on getting the last remaining boxes out of the apartment we stayed in while the house was being built. We had a lease through May so we should be finished up soon.

Benjamin is doing well right now. He has pains here and there, but mostly they are pretty mild. He had a tough time taking his morphine the other morning and was sick right after getting the medicine down. His hospice nurse, Tina, got a lower dose with a stronger concentration for us to try. If that doesn't work, though, we know that we can go to IV morphine since he has the PICC line in place. We only notice little things every so often that make us stop and wonder if they are signs of progression, but so often they can be explained away. We're trying not to read too much into things we see, but we're also trying to be realistic as well. For the most part, though, he is no different than he has always been. The other day while driving in the car Brian told Zachary "life must be good for a baby!" because he was riding around just in his diaper and no shoes. Benjamin heard Brian say this and piped up with "Life is very good for me!" I think that says it all.

Love, The Jones Family

Tuesday, May 25, 2004 2:26 PM CDT

Hi everyone!

Update May 26th Wed. - I just wanted to send out a quick note because I think a little mix-up must have occurred somewhere along the lines. We've received many Happy Birthday wishes for Benjamin, and while we appreciate all the sweet notes, Benjamin's birthday isn't until Sept. 1st. Thank you so much for thinking of Benjamin, though, and for wanting to make his day a happy one!!

We are so overwhelmed by the outpouring of love and support for our family and especially for Benjamin. Thank you so much for thinking of us all and for all the prayers that are being said.

I guess I can say that no news is good news because things are pretty much the same as they have been. Benjamin continues to feel so good and energetic - he and his brother are still running around and around long after Brian and I and my parents are ready to call it a day - haha! My parents are staying with us and taking breaks here and there to go back home to check on things. The boys love having more playmates, and we love having the support. It is allowing us more time to focus just on the boys. This past weekend we had a visit from Aunt Kim, Uncle Tim, Ashley, Aunt Adria and Ashton. The four cousins had so much fun together - they are quite a little group! Benjamin and Ashley had big plans to take on Chuck E Cheese Restaurant, and they had a ball! This was Zachary's first time to really get down and play there, and Uncle Tim took him around and introduced him to all the games. Benjamin was so sweet and used some of his "winning tickets" to get some surprises for his little brother. They were already making plans for another big get-together soon - this time the kids will finally be able to play out in the yard, swim in the pool, or run in the sprinkler because our sod finally arrived yesterday. The boys are so excited to get out there!

Benjamin had a PICC line placed in his right arm a week ago Monday, so we will be ready for any necessary pain medications if and when he needs them. He had bounced into my room a few days before that announcing that this time he was going to have a port. During treatment last time he had a Broviac (tubies) in his chest so an IV was always ready for blood draws and administering meds. The tubies were a wonderful, but the big drawback was that Benjamin couldn't get wet - big risk of infection. He had decided that if he got a port this time he wouldn't have to miss out on swimming, running in the sprinkler, etc...so our plan was to go ahead with the port. Then we found out that he could have a PICC line which would be much easier to place - for the port he would have to have a small surgery -and he could still get wet. After having the PICC line placed I was told by the nurse who cared for Benjamin that he wouldn't be able to get it wet - same risk of infection. We were so disappointed because we didn't want to take yet another thing away from Benjamin. However, we didn't realize that because of his situation as a hospice patient that those rules are pretty much thrown out in favor of quality of life. This was such a relief!! We still have to be very careful about wrapping his arm with saran wrap and tape to keep it dry, but their philosophy is to let Benjamin do everything and enjoy everything that he is up for. We're now back to weekly dressing changes and nightly tube flushes, but Benjamin is doing really well with all of this. Tina brought over some stuff that makes the sticky part of the tape peel away so that makes dressing changes so much better for him. He's very sensitive to tape so the changes can be very painful.

Benjamin has had some very minor pains at different times over the past few days, but they were easily brought under control with Tylenol and only once have we needed to give him Morphine. Thankfully the past two days have even been pain-free so we're praying for lots more days like that. Benjamin is working with his tutor (who is now a dear family friend) Mrs. Brinda three days a week so he can finish the first grade. We also have little "field trips" back to Tussing Elementary planned each week. Last week it was for the class pizza party and this week we are going over for the school walk-a-thon. Even Zachary is excited for this one - he keeps asking "Zachie go to ock-a-fon?" Another very pleasant surprise has been the continuation of Benjamin's Adapted Phys. Ed. His APE teacher is coming to the house each week to play with him. He's even offered to take him fishing any time. Last week they played indoor volleyball using a balloon. I think Benjamin gave Mr. Brevard quite a work-out because poor Mr. Brevard kneeled down to play while Benjamin got to run around. He was an awfully good sport to play two matches this way!! We just can't believe how many people have been touched by Benjamin's story and how many people have called or come over just willng to do anything for him to make him happy.

This week after the walk-a-thon we're going over to the Chimp Center at OSU with Mrs. Brinda. Benjamin had such a good time visiting there before with Nancy and her daughter. He loves watching the chimps show off how they can read little words - it really is a fascinating place! Brian is also working on tickets for WWE which is coming to town in two weeks. He ordered the tickets this morning, and Benjamin is really excited about it. The two of them went on an overnight trip to Dayton a few months ago, so we're so happy he's going to get another chance to do this. He's also trying to plan another trip to the movies to see Shrek for a second time. He enjoyed it so much he wants to go again, so I'm sure that another outing will be coming up. We're just trying to squeeze as many fun things in and let him have as much fun as a little boy should.

We're just taking it day-by-day and enjoying every bit of Benjamin. It probably sounds unbelievable to people, but things at home really don't feel that much different. Of course we feel the sadness in our hearts, but Benjamin is such a happy-go-lucky little guy and since he is feeling so good he doesn't act any different than he did during the time that he was in remission. Going out in public is much harder, at least for me. Being at home feels very safe and it feels like a place where everything is still OK. We're still taking him anywhere he wants to go, but it is really hard to keep up the brave front. We went to Benjamin's Cub Scout Crossing Over Ceremony at Blacklick Park this past Sunday, and while it was wonderful to see him out running around with all of the kids it breaks my heart at the same time. His den crossed over from Tiger Cubs to Wolf Cubs and he had such a big smile on his face as he took his turn on the bridge (to cross over) and received his new shirt. I was so happy to be able to watch him make that step, but so sad at the same time because next year his group will cross over to the next level. We try to just focus on having him here today and not think so much about the things that will be missed out on, but it's still there, hanging over our heads, so it is always a relief to get back to the "safety" of our home. Even though our hearts are broken, it is still hard to be sad whenever Benjamin is running around being his sweet little self. It will all hit very hard later, but for now we have to push that back and keep chugging along and hang on to hope - like he does.

Thank you so much for all of your prayers and good wishes for Benjamin! We really do feel the love and support and it does bring comfort!

Love, The Jones Family

Thursday, May 20, 2004 5:19 PM CDT

Hi everyone!

I'm sorry to have left people hanging for a bit, but we've been slowly settling in to the new reality in our lives. Never could we have imagined that life could take such a dramatic turn for the worse so quickly. On Tues., May 4th, Benjamin had a regular old day as a first grader, looking forward to summer vacation. As most of you know we found out the awful news of Benjamin's relapse on May 5th at his routine 3 month MRI. At the time we knew that the tumor had come back in the original location, and the plan was to hopefully go ahead with surgery sometime in the coming week. Benjamin's case was discussed at the Tumor Board meeting the next night, and at that time it was discovered upon further review that a second brain tumor was located deeper in his brain. The hope at that point was to still go ahead with surgery for the first tumor and to try gamma knife radiation for the second tumor. However, all of this was dependent on a clean scan of Benjamin's spine scheduled for the following Monday afternoon. Even after hearing that Benjamin relapsed we still had so much hope that the spine would be clear. Sadly this was not to be. We learned the news that not only was there spread to his spine, it is in several spots throughout his spine. These latest results were absolutely crushing news. We knew that even with a clear spinal MRI we were getting very near to running out of options and would probably still lose our son, but we would at least have more time with him. Because this has spread through his spine we now are out of options. There will be no surgery, Benjamin has received his lifetime maximum of radiation, and the chemo that works the best to break through the blood-brain barrier in the brain is far too toxic for Benjamin - this drug nearly killed his liver the last time around. Our only option left was to try an experimental chemo that would only buy a month or two of time, at best, however this chemo would be very hard on Benjamin's blood counts which would mean his spending his remaining amount of time in and out of the hospital. We very strongly believe in giving him quality of life for what time we have left with him. If we had an option that would give him any kind of a chance than that would be one thing, but we were told that children with as far advanced disease as Benjamin has do not survive. Benjamin only knows about the results from the first MRI. We know that we have to explain more as symptoms begin to develop, but for now we believe that the best gift that we can give him if to let him be a happy little boy for as long as possible.

The only blessing in all of this nightmare is that Benjamin feels so good right now. He acts just like the same little boy that he has the entire time he was cancer free. While this is so good, it makes this whole situation even more unbelievable. Deep down Brian and I always believed that we would be dealing with this again some day, we never thought it would be this soon. We always knew that Benjamin was very high risk, but we thought he would have longer than barely a year out of treatment to enjoy. He is still running around like crazy and having a ball with his baby brother. His appetite has dropped off and he is a bit more unsteady than usual, but that is about all we've noticed. Last night he mentioned having tingling in his left leg which later turned to leg pain. Overnight he developed pains in his left arm, and this afternoon he was having the pains in his left hand. We don't know what all of this means. We're hopeful that it is just because he has been playing video games so much, and we're trying not to read too much into it, but it is hard not to. We know that because of the spots in his spine that this will cause tingling and pain in his arms and legs. We're just praying that it isn't starting already. Benjamin is now in the hospice program through Children's Hospital, and he has a nurse who we can contact day or night, 7 days a week. This was by far the most difficult step so far, but we wanted to be ready for when things start to progress. A major issue during treatment last time was pain control - it would often take adult doses of morphine to bring his pain under control, and we want to be ready for this so we can keep him comfortable and pain free. Right now we are kind of living in limbo, praying that everything would just go dormant (or in a miracle for all the cancer to just disappear), but we are also realistic.

Benjamin has maintainted through all of this that he is going to beat it again just like he did before. We are gently trying to ease him into what is to come. Last night he and I watched a news clip about Stephanie Spielman (wife of Chris Spielman - OSU and pro-football player). She is living with cancer, but not letting it stop her from enjoying her life. Benjamin had some questions about how we are going to make the tumor go away if he's not having surgery, chemo or radiation. We talked about how sometimes people get cancer, have treatment, and then it goes away forever, but sometimes people get cancer, have treatment, it goes away, but then it keeps coming back and won't go away - as Stephanie Spielman described about her own situation. I told him that we had hoped that his would never come back, but it looks like his is the kind that comes back and can't go away. He said that he still isn't scared about this because he feels fine. I told him that we're happy about that, but that if he feels symptoms that it is to be expected and that Tina (his hospice nurse) has medicines that can help with so many of the symptoms and that Mommy and Daddy will be taking good care of him. I asked him if he had any other worries or questions, which he doesn't yet, and I asked him how he felt about the cancer not going away and he says that it is OK. We're just trying to ease him into this a little bit at a time. We don't want to plant seeds of worry in his mind over issues that he doesn't think about yet. We know that this is only going to get harder and harder, but we're so lucky to have an incredible amount of support from family and friends.

Benjamin was invited to make his First Communion at our church this past weekend. They allowed him to make it a year early, and the day was so special. Benjamin went out with his Daddy to pick out a sport jacket, dress pants, a tie, shirt and dress shoes for the occasion - he looked so cute!! He was so proud of himself to be able to make his First Communion and he was even given a part in the Mass - he read the petitions. It was incredibly hard not to lose it during the whole Mass, but we tried to just focus on the joy of the day. We shared the day with all of our family and many friends, and Benjamin smiled nearly every minute. It is hard to be down when you look at his little face.

Every day is very hard when I first wake up - it is like hitting a wall of pain, but after a good cry in the shower the rest of the day is almost like any other before all this happened. There are heart-tugging moments here and there, like when he talks about things when he grows up, etc..., but for the most part we're doing alright. We're so grateful to everyone for all the prayers, kind messages of support in Benjamin's guestbook and through e-mails and phone calls. We know that people get through this, but right now it seems impossible to imagine our lives moving forward. I tell myself every morning that even though this is happening, I have him today, so we're going to enjoy today. We're taking our cues from him, and we're doing whatever he feels up to doing. Today we went on a "field trip" back to Tussing Elementary for his first grade class' pizza party. The kids were so excited to see him, and he was equally thrilled to be there. While this all hurts so much, it is a comfort to see how many people truly love our son.

Thank you all for your continued prayers for Benjamin and our family. I will try to do a better job of updating more frequently about how Benjamin is feeling. For now we are blessed that he is feeling great and as I type this he is being told to "settle down and stop running around the living room."

Love, The Jones Family

Wednesday, May 5, 2004 6:46 PM CDT

Hi everyone!

I had so hoped that our first entry back would be a happy one filled with news about how well Benjamin has been doing and news about moving and getting settled in at the new house, but unfortunately we have sad news to share with you all. It is with broken hearts that Brian and I must tell you that we found out this morning that Benjamin's brain tumor has come back. Benjamin has been doing so well - feeling great, doing well in school, and happily settling in at the new house with his little brother. This morning we went in for our usual scan that comes every three months. We were devastated to learn that the tumor has come back in the same location as the first time around. We had been so looking forward to coming up on two years since his original diagnosis (May 15, 2002), and we really didn't see this coming at all. Of course, relapse is always in the back of any parents mind when going in for a follow-up scan, but we didn't feel unusually nervous because Benjamin has not shown any signs of problems as he did the first time around. Benjamin knows the outcome of today's scan and is understandably a little bit sad. He said "but I thought I was all done with that." He is by far much braver than anyone I know, though. I asked him if he had any questions or worries he wanted to talk about and he said "I'm not scared of being sick again - been there, done that!" His attitude is unbelievable, and Brian and I are just doing our best to boost him up as much as we can. It is incredibly hard not to break down and fall apart, but we don't want to scare him. Life is so surreal around here. We have just heard the worst news possible, yet we're walking around the house playing, laughing and doing everything we can to give the boys a "normal" existence.

Benjamin will be going back in to Children's for a spinal MRI on Monday afternoon to find out if this has spread to his spine, and plans will proceed from there. He will probably have another brain surgery within a week. We really don't know alot yet, but I will try to post updates as soon as I know what the next step will be. Please say an extra big prayer for Benjamin tonight.

Love, The Jones Family

Thursday, March 25, 2004 9:03 AM CST

Hi everyone!

Benjamin has had a great week so far - he's had lots to do. Over the weekend his Tiger Cub den had a field trip to the Ohio Historical Museum, and he and his Daddy had a ball. I didn't think they would be gone as long as they were, but they were having so much fun they stayed for hours. Benjamin looked about asleep on his feet when they got home, but a good time was had by all.

On Tues. night our family went over to the Violet Township Fire Station for a tour. This was the last thing Benjamin needed to do to complete his activities to earn his Tiger Cub badge before he moves up to a Wolf Cub. We had a really interesting tour - I did feel bad though because while someone had scheduled our appointment, no one had told the fire fighters that we were coming. One of them was very kind to take us all around and describe everything to Benjamin - it was during their dinner time as well. He didn't rush us through at all, and we really appreciated all the time he took with Benjamin. We toured the whole facitility and Benjamin got to sit up inside one of the fire engines - he thought that was so cool! Brian took some really cute pictures, and maybe once we're settled in at the new house Brian can get the new pictures posted. Now everytime we get in the car Zachary asks me if we're going to the Fire Station - he was equally impressed!!

Yesterday Benjamin had his first tutoring session with Mrs. Brinda (she tutored him at home for his entire kindergarten year and through the summer before first grade) at the library. He has been so excited all week for this. He was anxious to see her because he has really missed her alot, and he also was looking forward to being dropped off at the library with Nancy - very grown up!! - and that he would be riding home with her. He really loves his independence! When they got back home last evening Nancy said that she can see some real progress in his reading from when they last worked together at the end of the summer. The reading has been a real struggle for him, but at least he's moving forward. He has already asked me this morning when his next meeting with Mrs. Brinda will be. I think this will be so good for him to work with her - he already loves her, and the extra time spent on reading can only help him more.

He's really doing pretty well in school, all things considered. He loves math (that comes from Gramma Beebe - math teacher!!) and he's doing very well in it. All the papers he brings home are 90's - 100 The reading is pretty tough, and at times the spelling is too, but he's doing alright. At least when he has a problem spelling a word I can figure out where he's coming from - he spells very well phonetically. This week's test looks like it will be alright for him, but the word "please" is going to be a tough one.

Tonight Benjamin has a Tiger Cubs meeting and he's really looking forward to telling the guys all about his time at the Fire Station. He was most excited about sitting in the engine and hearing about how the fire fighters gear up and get over to a fire. The fire fighter who gave us our tour even showed us the huge binder that sits up front for the navigator to map out the way to the fire. He looked up our new house in the binder and we're in there already - we all thought that was pretty neat. It is quite a job to keep up with all the addresses, especially in an area that is growing as quickly as some of the areas around here are. Benjamin can't wait to tell about all this and to show the guys the Fire Station T-shirt that was given to him.

Zachie is just a couple weeks away from the big "2!" His whole first year of life was while Benjamin was in treatment, and his second year has been spent with our family getting used to a new "normal" life. He wants to have an Elmo party, so that's what we will do. Zachary loves to talk - we hear alot of "come here Benny!" "cut it out, Benny!" "I hab (have) it, Benny!" "thank you much, I 'preciate it!" , and many, many more! He's such a funny little guy, and he thinks the world of his big brother. He and Benjamin both have the same sense of humor - it is just like their Daddy's - they love to tease and kid around. Zachary loves to tell Benjamin "I'm bigger Benny!" which riles Benjamin up, and then we listen to an extended "conversation" of "I'm bigger!" "No, I'm bigger!" "I'm bigger!" "No, I'm bigger!" - it can go on indefinitely, and Zachary has a huge grin on his face the whole time. They are so entertaining!!

Thank you so much for checking back in on us - we really appreciate all the support!!

Love, The Jones Family

Sunday, March 14, 2004 5:22 PM CST

Hi everyone!

Not much new to report from here. We actually made it through one week without a call from Benjamin's school because of trips, falls, etc...yeah!! It was a long week for Benjamin, though, because the week before he had only been to school for one day since he had been sick. Every day he asked if it was the weekend yet. I knew he must be pretty tired. He always grumbles every morning when it is time to get up for school, but he really does love it. He told me that he just wished the school day started at around noon - haha! I don't know if I wrote about this before, but he has started laying down for a rest at school every afternoon after lunch for awhile. The teacher he has for math and reading said that while he is really "on" in the morning for math, when she gets him back in the afternoon for reading he has tremendous difficulty staying focused and alert. She said that he gives 110but he is just too tired to put pencil to paper. We talked about having his day end earlier and about having him take a rest during the day, so we're trying the rest during the afternoon first. This was week one for that, so I'm very curious to find out if this is making a difference for him. His teacher told me that probably the best thing for him would be for him to have the classes that require the most concentration and effort on his part in the mornings when he is at his strongest. I think we will probably get to that point at some time, I think that will probably help him the most. We're just very grateful that his school is more than willing to try whatever it takes to work out an appropriate schedule for Benjamin. They have said time and time again that they just want to try whatever will help him succeed. I'm so amazed by this because I've read many web pages telling about the parents having to really fight on every issue for their child, and thankfully we have not been faced with that.

I also got a call from Benjamin's tutor, Nancy Brinda - she was his tutor for the entire kindergarten year and the summer before first grade. She's going to be working with another child in our area and she asked if we'd like to have Benjamin work with her again. We jumped at the chance because Benjamin had just recently been asking if he could meet with Mrs. Brinda again this summer just like last year. I'm not sure yet when they will be getting started, but we're all looking forward to that. We all think of Nancy ( and now her family ) as part of our family, and we've missed seeing her because we used to see her almost every day during Benjamin's treatment.

We don't have much planned for the next couple weeks. Spring break is coming and during that week we close on the house - yeah!! We went over this afternoon to see how it's coming along, and being there made me so anxious to move!! The carpet still needs to go down, the deck added on, appliances brought in, and some touch-ups around on the painting, but it looks like a real house now. It has been fine here at the apartment, but it will be great to unpack our things and kind of spread out a little bit. We had to bring so many boxes and odds and ends from the old house in here that it is a little cramped. Zachary and I sleep on an air mattress in the dining room since we had to completely fill the second bedroom with boxes, so it will be nice to have our own rooms again. Three more weeks!! I think we're all kind of going a little stir crazy here. The boys play well together, but they've been getting really revved up in here and there isn't much room to run it off. All I've heard this afternoon is "cut it out, Benny!" which is Zachary's new favorite expression. Zachary also likes the sound of his own voice shrieking, and we've been hearing ALOT of that over the past couple weeks. I think our neighbors here at the apartment will be happy to see us go - haha!

Well, that's all for now. Thank you for looking in on Benjamin and for keeping him in your prayers. Hope it's a great week for you all!

Love, The Jones'

Sunday, March 14, 2004 5:22 PM CST

Hi everyone!

Not much new to report from here. We actually made it through one week without a call from Benjamin's school because of trips, falls, etc...yeah!! It was a long week for Benjamin, though, because the week before he had only been to school for one day since he had been sick. Every day he asked if it was the weekend yet. I knew he must be pretty tired. He always grumbles every morning when it is time to get up for school, but he really does love it. He told me that he just wished the school day started at around noon - haha! I don't know if I wrote about this before, but he has started laying down for a rest at school every afternoon after lunch for awhile. The teacher he has for math and reading said that while he is really "on" in the morning for math, when she gets him back in the afternoon for reading he has tremendous difficulty staying focused and alert. She said that he gives 110%, but he is just too tired to put pencil to paper. We talked about having his day end earlier and about having him take a rest during the day, so we're trying the rest during the afternoon first. This was week one for that, so I'm very curious to find out if this is making a difference for him. His teacher told me that probably the best thing for him would be for him to have the classes that require the most concentration and effort on his part in the mornings when he is at his strongest. I think we will probably get to that point at some time, I think that will probably help him the most. We're just very grateful that his school is more than willing to try whatever it takes to work out an appropriate schedule for Benjamin. They have said time and time again that they just want to try whatever will help him succeed. I'm so amazed by this because I've read many web pages telling about the parents having to really fight on every issue for their child, and thankfully we have not been faced with that.

I also got a call from Benjamin's tutor, Nancy Brinda - she was his tutor for the entire kindergarten year and the summer before first grade. She's going to be working with another child in our area and she asked if we'd like to have Benjamin work with her again. We jumped at the chance because Benjamin had just recently been asking if he could meet with Mrs. Brinda again this summer just like last year. I'm not sure yet when they will be getting started, but we're all looking forward to that. We all think of Nancy ( and now her family ) as part of our family, and we've missed seeing her because we used to see her almost every day during Benjamin's treatment.

We don't have much planned for the next couple weeks. Spring break is coming and during that week we close on the house - yeah!! We went over this afternoon to see how it's coming along, and being there made me so anxious to move!! The carpet still needs to go down, the deck added on, appliances brought in, and some touch-ups around on the painting, but it looks like a real house now. It has been fine here at the apartment, but it will be great to unpack our things and kind of spread out a little bit. Three more weeks!! I think we're all kind of going a little stir crazy here. The boys play well together, but they've been getting really reved up in here and there isn't much room to run it off. All I've heard this afternoon is "cut it out, Benny!" which is Zachary's new favorite expression. Zachary also likes the sound of his own voice shrieking, and we've been hearing ALOT of that over the past couple weeks. I think our neighbors here at the apartment will be happy to see us go - haha!

Well, that's all for now. Thank you for looking in on Benjamin and for keeping him in your prayers. Hope it's a great week for you all!

Love, The Jones'

Sunday, March 14, 2004 5:22 PM CST

Hi everyone!

Not much new to report from here. We actually made it through one week without a call from Benjamin's school because of trips, falls, etc...yeah!! It was a long week for Benjamin, though, because the week before he had only been to school for one day since he had been sick. Every day he asked if it was the weekend yet. I knew he must be pretty tired. He always grumbles every morning when it is time to get up for school, but he really does love it. He told me that he just wished the school day started at around noon - haha! I don't know if I wrote about this before, but he has started laying down for a rest at school every afternoon after lunch for awhile. The teacher he has for math and reading said that while he is really "on" in the morning for math, when she gets him back in the afternoon for reading he has tremendous difficulty staying focused and alert. She said that he gives 110%, but he is just too tired to put pencil to paper. We talked about having his day end earlier and about having him take a rest during the day, so we're trying the rest during the afternoon first. This was week one for that, so I'm very curious to find out if this is making a difference for him. His teacher told me that probably the best thing for him would be for him to have the classes that require the most concentration and effort on his part in the mornings when he is at his strongest. I think we will probably get to that point at some time, I think that will probably help him the most. We're just very grateful that his school is more than willing to try whatever it takes to work out an appropriate schedule for Benjamin. They have said time and time again that they just want to try whatever will help him succeed. I'm so amazed by this because I've read many web pages telling about the parents having to really fight on every issue for their child, and thankfully we have not been faced with that.

I also got a call from Benjamin's tutor, Nancy Brinda - she was his tutor for the entire kindergarten year and the summer before first grade. She's going to be working with another child in our area and she asked if we'd like to have Benjamin work with her again. We jumped at the chance because Benjamin had just recently been asking if he could meet with Mrs. Brinda again this summer just like last year. I'm not sure yet when they will be getting started, but we're all looking forward to that. We all think of Nancy ( and now her family ) as part of our family, and we've missed seeing her because we used to see her almost every day during Benjamin's treatment.

We don't have much planned for the next couple weeks. Spring break is coming and during that week we close on the house - yeah!! We went over this afternoon to see how it's coming along, and being there made me so anxious to move!! The carpet still needs to go down, the deck added on, appliances brought in, and some touch-ups around on the painting, but it looks like a real house now. It has been fine here at the apartment, but it will be great to unpack our things and kind of spread out a little bit. Three more weeks!! I think we're all kind of going a little stir crazy here. The boys play well together, but they've been getting really reved up in here and there isn't much room to run it off. All I've heard this afternoon is "cut it out, Benny!" which is Zachary's new favorite expression. Zachary also likes the sound of his own voice shrieking, and we've been hearing ALOT of that over the past couple weeks. I think our neighbors here at the apartment will be happy to see us go - haha!

Well, that's all for now. Thank you for looking in on Benjamin and for keeping him in your prayers. Hope it's a great week for you all!

Love, The Jones'

Tuesday, March 9, 2004 4:15 PM CST

Hi everyone!

I just thought I would post a short update since we have been away from Benjamin's journal for a bit. Everything is fine, but unfortunately we have had a nasty little stomach bug floating around our place. Benjamin missed four days of school last week - well, actually the last day he had to miss because the bug had moved on to me - ughh! In the beginning we didn't really think that Benjamin was really sick because he felt fine - we thought he was having a reaction to one of his medicines. On a good note, we were able to finally wean him off the medication Nexium, so Benjamin now only has to take one medicine, and that one is for keeps because it is for his thyroid (which was damaged due to radiation). That was the one good thing to come out of all this. We have to say a HUGE thank you to Gramma and Boppa who willingly came into "sickie central" to take Benjamin to stay at a hotel here in town with them while the bug ran its course. Our big hope now is that the bug will leave them alone!! Benjamin got quite a kick out of staying at a hotel with them, having a big screen TV for himself, and of eating all the donuts he could (and taking home a few as well). We can't thank my parents enough for coming to the rescue!!

Benjamin and I were able to get over to his school for his dance, and we had a great time together! His school put on a really nice dance! They had it decorated beautifully and a DJ - the works! It was a good time, and we would have loved to stay longer, but Benjamin was really tired out after about an hour. That's OK, it was so nice to go to a dance with my son and just have a ball. Unfortunately Benjamin was sick the next day and couldn't go to his Blue/Gold Banquet for Cub Scouts. I felt so bad for him because he was really looking forward to it, but it couldn't be helped. He has his new blue shirt now and I guess I will have to dust off my sewing "skills", and I use this term loosely,(I will probably calling on my Mom for advice on this) and get his patches sewn on.

The new house is almost done - we're just a few weeks away now. The carpet and kitchen and bathroom flooring was supposed to go in today. We're getting anxious to move even though it has been nice here at the apartment. Benjamin went over to the house with his Daddy and his grandparents and got to see where his new room will be. He thinks the master bedroom would be good for him - haha - that is not happening!

Well, I'll try to update more later sometime this week or weekend, but we've been anxious to check back in to his page and to check on the other little kids we follow. Thank you for continuing to look in on our guy!

Love, The Jones'

Thursday, February 26, 2004 12:49 AM CST

Hi everyone!

Things have been pretty uneventful around here this past week. Benjamin has been feeling well and has had a good week at school. He was so proud of himself - he brought home a whole pile of papers, and the majority of those had 100% written across the tops of them. He is doing so well in math which has been a complete surprise (a very pleasant one!) since we were told that math would be a subject that would probably be difficult for him. Maybe down the line this will be a problem for him, but at least for now it hasn't been. His spelling tests are getting much better (another 100%) since my Mom suggested asking his teacher if he could try taking his tests orally. The week before we tried this he knew every single word, but when he took the written test he scored a 50%. He couldn't understand what happened because he knew that he could spell those words. However, on his latest spelling test (an oral test) he remembered how to spell every word. His teacher said that from now on he can take all of his spelling tests orally. Mrs. Boucher said that the short term memory problems kick in from the point when he thinks the letters to spell the words to the point of writing the letters with his pencil. The info is all in there, but getting it back out is the problem - he hits the road blocks. She said that at some point he may just take all of his tests orally, and none of us have any problem with that. We've told him so many times that "O's" and 100%'s are not what is most important to us, but once he gets a taste of those grades he wants to keep getting them. He's very competitive with himself.

Reading is still a huge struggle for Benjamin. He tries so hard, and we know he is doing the best he can, but this area has been really affected by radiation. We try not to dwell on it with him - we tell him that he is going to get it and he is improving. I did find out at his parent/teacher conference on Tues. night, though, that this is causing him a great deal of frustration in his reading class. He goes to a different teacher for reading (and math) and he is in a very small group setting. His teacher was very concerned about Benjamin's energy level by the time she sees him in the afternoon for reading. She sees him in the morning for math, and at that time, when his energy is at its highest, she said that he is right on and can rattle off the answers to all her questions. By the time he is back with her later for reading, however, he is both mentally and physically tired out and is clearly frustrated with his work. She said that he never complains and will not admit that he is tired, but she has noticed that his little brow is furrowed, he rubs his forehead alot, and he just cannot concentrate on the tasks at hand. She said he is such a trooper, though, and she wished she had 100 kids just like him. While most kids show their frustration by refusing to work any further, by complaining, and slouching down in their chairs, she said that he justs keeps on working at it without complaint. Her concern, and ours, is that at some point his frustration will get so great that he will feel like giving up, and none of us want to see that happen. We're still working on some ideas to help Benjamin get through his day with ease. One idea is to shorten his day and have him leave for the day at 3:00pm rather than stay until 3:45pm. By 3:00pm the kids are heading out to their last recess, and then when they come back in the last minutes of the day are getting things packed up and ready for the next day. Another idea is to have Benjamin take a rest in the middle of the day - either in the office or somewhere else that is quiet - and see if that would boost his energy for the remainder of the day. I had originally been hopeful for the latter idea, but Benjamin's face fell when he heard that he might not be out for recess ( this is the second recess of the day, after lunch, and it is a longer time period) with his friends. We're thinking that maybe the other idea of coming home early might be better for him. We want him to be able to have time with his friends and be social - we think that is also so important for him, especially since he spent the better part of a year in isolation from other kids. He has adjusted so well to being in the classroom and forming friendships, I hate to take that away from him. His classroom teacher, Mrs. Fortenbacher, said that he really perks up at recess time, and we know that he runs his little heart out and plays hard since I get a weekly call from the nurse that he's collided with someone during a game of tag, etc...(haha!) We think that the exhaustion stems from how hard he has to work mentally during this part of the day. Once he gets a break and can run around again he really comes around. His spec. ed. teacher suggested that at some point we may need to look at adapting his schedule so he is having his most difficult classes in the morning (math and reading) when his energy is at its highest, and saving the rest of his classes that are not a problem for the rest of the day. We think this would really be ideal for him, and we're so thankful that his school is so willing to do whatever it takes to help Benjamin be successful in school.

Both of Benjamin's teachers had such positive things to say about him. Mrs. Fortenbacher said that he quite popular with the kids in his class - she said that "they all love Ben!" For us we aren't emphasizing that he win any popularity contests, but it is so good to hear that even though he missed an entire year of school he has been able to get back into the school environment, work hard, and still make friends and be treated just like any other kid. We were so worried that maybe kids would be mean to him because he has the scar on the back of his head and his hair hasn't completely come back in in that small patch to cover it. We know that sometimes kids can focus on one thing and really be cruel, but the kids in his class have really accepted him and like him for being "Benjamin." Here and there he has run into a few instances of teasing, but I told him that no one escapes that. The girls in his class have really taken him under their wings (don't ever ask him about this, though, or he will give you the evil eye - haha!) He sits at a table with five girls,and they remind him from time to time what he needs to be doing because he has a tendency to lose focus or forget some of the directions. Mrs. Fortenbacher said that the girls are really good about it though, they remind him, but they let him do things for himself. I thought this was really sweet! He's also made friends in some of the other classes as well. As we're walking out after school we've had more than a few occasions of girls (uh-oh! Benjamin doesn't think this is as cute as I do) stopping him to tell him good-bye. When I ask him who the girls are he always responds with a grunt and a muffled "I dunno." When I ask if they're in his class he's told me that he met them on the playground. Like I said, popularity really doesn't matter to Brian or me, we're just thrilled that he has been accepted and treated like everyone else. He's happy and well-adjusted, and it just seems like a miracle that he can be this way after everything he's been through.

Well, aside from that, not much is new with Benjamin. He has Tiger Cubs tonight, which he loves!! This Sat. night he and I have a "date" to go to the dance at his school. We're both really looking forward to that! I will definitely update more on that later on. I got a chance to visit with Benjamin this morning because he forgot his glasses at home. His job for the week is delivering papers to the office, so he was on his way down when I came in with his glasses. He looked so "official" doing his job of delivering papers and putting them in the correct boxes on the school secretary's desk. He was obviously taking his job very seriously. He didn't waste any time getting back to work after I gave him his glasses, but it was fun to see him "at work."

We got a surprise phone call yesterday from the builders for our new house - our closing date is April 7th! We'll be moving in a little over a month. We were stunned to hear that things are moving along that fast, but they had been able to complete the whole exterior before the spring rains came, so that has allowed them to keep moving ahead inside. We've been here at the apartment for almost two months now, and it is going to be strange to leave here. It's been really cozy here, but it will be nice to have everything out of storage and boxes and feel really settled in once we get there. Benjamin will be on spring break that week, but we'll probably move slowly over the course of a few weeks because we still have the lease here at the apartment. That will give us a little time to do some painting or whatever ahead of time. Benjamin is so excited to get in his new room. Before long we'll have to start boxing things up again, but this will be the last move (I hope!!).

Well, that's all for now. Thank you for checking in on Benjamin and for keeping him, and all the other children, in your prayers. Hope you have a great weekend!

Love, The Jones'

Thursday, February 19, 2004 8:54 AM CST

Hi everyone!

Hope it has been a good week for you all - it has been a nice one around here. Benjamin has been feeling well, and my Dad had a wonderful follow-up appt. (from his surgery in Oct.) and he doesn't need to go back for a year. These are the kind of weeks we love!!

I teased Benjamin on Tues. that he just can't seem to stay away from Children's Hospital because we almost had to make a run in. He was just there on Monday for PT. On Tuesday afternoon I received a call from the school (my Mom jokes that the school office must have our number on speed dial - I think she's right - haha!) because Benjamin had taken a spill on the playground during a big game of tag with his buddies. He had slammed his face into the slide, and they weren't sure if he should have stitches on his eyelid. Zachary and I packed up and headed over to check things out. He was very worried about his big brother, and the whole way to Benjamin's school he said "Benny OK? Benny's eye boo-boo?" As we came around the corner into the nurse's office we saw Benjamin sitting in a chair looking like Rocky did after coming out of the ring. He had a cut on his eyelid, his nose was scraped up and red, his cheek was all red, and the blood vessels under and around his eye were broken - he had little red dots all around his eye. Thank God that while he had banged up the right side of his face, he had avoided the shunt! The cut on his eye had basically stopped bleeding, but I signed Benjamin out from school (it was the last 20 minutes of the day anyway), and we went downtown to meet Brian so he could check his eye. Brian's office building is just minutes away from Children's Hospital, so I figured that if Brian thought his eye looked bad enough we could just run right over to the hospital. Benjamin did admit on the ride in to Columbus that he felt pretty cool when the playground teacher had walked him in to the nurse's office because at that time the blood from his cut was running down the side of his face, and everyone thought it was awesome - kids are hilarious! He wasn't as impressed with my rendition of the theme from the Rocky movies as we drove to Daddy's office. He asked "what are you doing?" I told him that he reminded me of Rocky after he stepped out of the ring, and I asked if he wanted for me to sing some more. He got a strange expression on his face (like he was trying not to laugh at how weird his mother is) and said "if you feel that you must." The nurse had put a "butterfly"bandage on Benjamin's eye, and it wasn't bleeding anymore, so we decided to just take him home and see how the rest of the afternoon went. He was fine, and he went about the rest of he evening as usual.

We told Benjamin that as long his cut didn't open back up then he would be allowed to go back outside for recess yesterday, as long as he remembered to take it easy out there. Well, over dinner last night we asked him how it went on the playground, and he enthusiastically said "oh, we had a great time, we played tag again." Brian and I tried not to laugh as we asked him what happened to taking it easy out there. I asked him if he took it slowly, and he said, "no, we ran as fast as we could!!" Obviously, he was over the previous day's events - haha! Then last night after dinner and homework he was playing a video game when we heard a little crash from the bedroom. When I went in I found him sitting on the floor rubbing his head and the GameCube laying on the floor next to him. Apparently he had been moving around on the floor looking for a new game (and he stores them neatly scattered all over the bedroom floor) and while he was moving around he got tangled in the cords (which he also stores neatly wrapped around the other cords from his Play Station - they're always a tangled up mess - haha!) and accidently pulled the GameCube down on top of his head! I give up - I think we need to just wrap his whole body in bubble wrap and then we can rest easy - haha! Ahhh, little boys!! I told Brian, though, that after all he has been through, it is great to be called into the school for a typical kid problem. He hadn't even tripped over his own feet, a friend had accidently run into him, so this wasn't even a balance issue. I had expected for Benjamin to have a real shiner and probably some bruises on his cheek and nose, but there is nothing at all! He just has the butterfly on his eyelid and a band-aid over that. It is kind of funny, though, because when Brian was a little boy he cut his eyelid in the same spot, and when Zachary was first walking he fell and cut his eyelid in the same spot, too. Now all three of them will have a tiny scar in the same spot on the right eyelid. It must be some kind of initiation as a Jones boy - haha!

Tonight Benjamin and his Daddy have a Tiger Cubs meeting, and tomorrow is Donuts with Dad at Benjamin's school. He and his Daddy will be up and out of here very early so they can have breakfast together at school. Benjamin is really looking forward to this. I can't wait for Muffins with Mom!! Benjamin and his Daddy had lunch together at school again on Monday since Brian had the day off. Benjamin's lunch period begins at 12:45pm, so I was pretty surprised to see Brian's car pull in at home at just a few minutes after 1:00pm. I thought something must be wrong, but Brian got out of the car laughing. He said that Benjamin ate his lunch in just minutes and got up to throw away his things - and then ditched him!! He had been really excited to see Brian waiting for him - Benjamin's teacher told Brian that Benjamin had been talking about it all morning. Brian sat down at Benjamin's table with his little buddies, and Benjamin wasted no time at all. They talked and had a good time, and then Benjamin raised his hand - at his school you have to be dismissed to throw away your things and go outside. After he threw away his trash, he came hurrying past Brian, waving, and said "bye Dad!" Brian was left sitting at a table with a group of first grade boys. Apparently Benjamin had eaten a little too quickly because the kids weren't allowed outside yet, so he came back and sat down with Brian for a few more minutes. Then when the bell rang he yelled "bye!" again and took off. Brian went back in the office to sign out, and he was laughing about the whole thing as he told the school secretary. She said that all the kids take their recess very seriously, and Brian was not the first parent who has come in the office telling that story. We had a good laugh about it.

Well, that's about all the news here. I need to go check on the TV because it keeps switching out to "snow" and Zachary is freaking out. He keeps running to me saying "TV, bad noise - scar-wee! (for scary). He talks so much now. Yesterday he was able to say his whole name for the first time. Usually he calls himself "Zachie," but this time he told me that his name is Zacha-wee Jones - that's pretty close. We hope you have a great weekend, and thank you for the love and prayers for Benjamin!

Love, The Jones'

Friday, February 13, 2004 6:57 PM CST

Hi everyone!

HAPPY VALENTINE'S DAY
I had this update almost finished and then my finger slipped and I lost it all - here we go again. We are so thankful to report that Benjamin's scans came back clean this morning. His MRI was clean and his shunt series checked out fine.

We went to his MRI first and Benjamin had the same nurse to prep him that we have had many times before - she actually prepped him the day of his surgery to resect the tumor which I had completely forgotten about until we were talking about it this morning. She always remembers that Benjamin doesn't like to wait to have his IV started once he is brought back for his turn. He gets so stressed out about the needle poke, so she always tries to get it over with as quickly as possible. The Emla (numbing cream) doesn't work for him, and he even passed up the new numbing spray just to get things moving. He was very brave and his nurse very kindly drew all kinds of vials of blood from him so he wouldn't have to be poked again for labs for his endocrinology doctor (to check how the thyroid medication is working) or for labs for the Hem/Onc clinic - it was a 3 for 1 deal (three sets of labs for one shot).

Usually Benjamin has been able to get by with the very minimal amount of sedation, but unfortunately today he needed more medication. Consequently he was really loopy when he woke up - even tonight he's not totally with it. We were afraid that the extra sedation was going to keep him from getting back to school for his Valentine's Party that he has been so looking forward to, but we thought maybe he would perk up more as the afternoon wore on.

After the MRI we went over to Radiology for the shunt series which is a very quick x-ray. Zachary and I waited outside the room while Brian and Benjamin went in for that scan. Zachary watched the "X-ray in Use" sign every second and whenever it lit up he called out "cheese!" for Benjamin since he was having his "picture" taken in there.

Then we headed back up to the clinic where Dr. Olshefski and Suzanne were so sweet to try to hurry Benjamin out so he could go to his party. They went over the results of both scans - which were both good!! - and now we are guessing that whatever those two episodes were last week must have been some kind of fluky thing. The only heartstopping moment was when Dr. Olshefski explained that the neuro people who read the scans had noted on their report that a "spot" they have been tracking since Benjamin's scans after radiation has remained stable. I think our hearts jumped up in our throats until we found out that they believe this tiny spot (3 mm in size) is most likely either radiation scarring or could possible be a normal part of the brain called the Choroid Plexus (sp?). It was first picked up over a year and a half ago, and it has not changed one bit since that time. This was the first time it was mentioned on the reports because they noted that the spot was unchanged. We were relieved to hear that!! Usually kids who have been through this are scanned every three months for the first two years, and then every six months for the next three years, but to be on the safe side they are going to continue the scans every three months an extra year for Benjamin. Having the extra peeks at what is going on in Benjamin's head is actually kind of a relief to me. We asked if these scans are still considered "clean" and we were told that yes, all of his scans to date are clean, so we are so happy and thankful to know this!! Thank you so much for keeping Benjamin in your prayers!!

Well, after all was said and done, Benjamin was so wiped out from the extra sedation he couldn't go over to school for his party. I think I was more disappointed than he was. We left the decision up to him, though, and he said he just felt too tired. We were a little bit nervous about sending him anyway since he was a little unsteady still from the sedation, but I would have been willing to go over to school and stick around for the party - it was the last part of the day anyway - but that's alright. His Valentine's will be waiting for him on Monday. All in all, Friday the 13th turned out to be a good day afterall. We kind of cringed when we found out the scan date, but after 16 years of Catholic school education we should know better than to be so superstitious - haha!!

I'm going to the Tussing Elementary Snow Ball with my son on Feb. 28th -I can't wait!! We found out the dance is really for both parents to attend, but Brian decided that Benjamin and I should go together and he would stay home with the baby. I'm really looking forward to this special afternoon out with him. Grades K through 2 attend the dance from 4:00pm to 6:00pm, and grades 3 and 4 go from 6:00pm to 8:00pm. I've always wanted to go to one of those "Father/Daughter, Mother/Son" types of dances. This really means alot after the nightmare Benjamin has been through. It reminds me so much of when he was tiny (like Zachary's age) and we'd play his Toy Story soundtrack. Every time the song "You've Got a Friend in Me" came on he always wanted me to dance with him, so I would kneel on the floor and we'd dance together. I loved to picture a time like this when he was more grown up and maybe he'd go to a school where they would have a Mother/Son dance. When I found the flyer in his backpack I was thrilled. He was at first horrified because he thought his "date" had to be a school age girl (we always tease him that someday he will feel differently - haha), but he was excited when he found out that we could go together. We'll definitely have to post some pictures from this event!

Well, that's about all the news from here! Thank you so much for thinking of Benjamin and for checking in on him!

Love, The Jones'

Wednesday, February 11, 2004 6:23 PM CST

Hi everyone!

This is my second attempt to update, so I hope I don't lose this one too. Benjamin has been having a good week so far. He has been feeling well, and he hasn't had anymore headaches. I got a call from Suzanne this afternoon (his nurse practitioner), and she said that she had talked with Benjamin's doctor about the two "episodes" Benjamin has had in that last week or so, and he thought a shunt series (scans that run the whole way down his shunt tubing to his abdomen) would probably be a good idea. We'll be able to get that all done on Friday, as well, before he is sedated for his MRI. We're so glad to be able to take care of things all at once. He has been his regular little old self since he was "sick" on Friday, so it's nice to see him running around. We're hoping the whole thing was just some weird "kid illness" (not "weird kid" illness - haha!) or, if not that, then just a little kink or something in the tubing.

Brian is finally up and around again - this bug really hit him hard, and he is never sick. We've been together for 15 years, since we were 17, and this is only the second time I've seen him sick. He finally gave in and went to the doctor on Monday, and he came home with a bag full of prescriptions for his ear infection, throat infection and sinus infection. He was pretty miserable, but he's thrilled that because of his sickness he lost 18 lbs. I told him that is a heck of a way to kick start a diet, but at least he's off and running.

Last night we had a visit from Uncle Tim (from Ashtabula) since he was in town for meetings. Unfortunately we didn't get to visit for too long because Brian was sick when he first came to town, and he wasn't feeling well getting ready to go back home. He brought Valentine's treat bags for the boys from cousin Ashley, and the boys were so excited. Zachary's eyes got so big when he saw his treat bag and he said "Santa!!" He definitely gets the Santa/presents connection. Ashley gave Zachary a stuffed puppy and he named it Benny - he is all about his big brother!! They can't wait to get back up to Ashtabula to play with Ashley (and cousin Ashton - the baby) and visit with everybody.

My Mom saw an article in a magazine about helping children with learning disabilities by doing balancing exercises, so we looked it up on the internet and are doing some at home exercises with Benjamin. The exercises were designed by NASA, and it is designed to retrain the brain to pay attention to balance and train the eyes to track smoothly. It is about doing visual exercises to help the sense of balance which they believe affects processing abilities. The studies have been done on children who were born with difficulties that cause problems with reading, handwriting, comprehension and coordination, and while Benjamin's problems have been caused by the trauma his brain went through, we're hoping the exercises will have the same effects for him. Everything in that article is a perfect description of him, except for the fact that his problems came out of having a brain tumor and radiation. Many of the exercises are similar to things he has done in PT, so I'm sure that working at home will only help strengthen him more (and hopefully affect his learning too) and can't hurt anything. He stands on a balance board and we play catch with bean bags, tennis balls or nerf balls. We just make games out of it and he really likes it. Zachary wants to be part of it so badly - sometimes he pushes his way onto the balance board while we're playing "Hot Potato," and he gets up there and says "fwee tato, fo!" It is really funny! Having Zachary get up on the balance board really made it clear how much Benjamin's balance has been affected. I guess since I'm with Benjamin all the time and have gotten used to the way he sometimes stumbles or loses his balance (he really does get around well, but he's just more likely than other kids to lose balance) I don't really notice it anymore. As soon as the baby got up there, though, it was apparent. Zachary was up there just as balanced as could be - like he was standing flat on the ground. Benjamin didn't notice at all and wasn't a bit bothered by it, so we're not worrying about it either. Benjamin has really come a long way and there is no reason to think that he can't improve even more. And if he doesn't, I'm just thankful for him. As we've said all along, when he is grown up and off at his job, no one is going to care whether he can run really fast or balance on a balance beam. He's got a pretty good sense of self-esteem in that he realizes there are areas where he doesn't quite keep up with the other kids, but he also knows there are other areas where he excels. We'll just keep focusing on those areas. We've told him that no one is good at everything, and he seems to get that. (If anyone would like to know more about these exercises and the whole program for their own children the address is www.learningbreakthrough.com)

Right now he is off on a night out with his Daddy and two friends and their dads. Benjamin received a very nice invitation from Make-A-Wish to go to the Blue Jackets hockey game tonight, and he has been looking forward to it all day! They get to sit in one of the suites, as well, and he thinks that is pretty neat. He really wouldn't have cared where they were sitting, though, because he just loves to go watch the games. Brian said that he really gets into it! Thank you so much to Make-A-Wish - they are an incredible organization, and they always go above and beyond for the children! I'm sure he will have lots of stories to tell when he gets home later tonight. Zachary, however, is going through "Benjamin withdrawal" and has been all over tonight. He's very tired, too, so he just wants to be held constantly. If he can stay awake until Benjamin gets home he will let out his usual yell when he sees his brother "Benny!!" Before Benjamin was born and when we were discussing nicknames I always said that I would only call him "Benjamin" because I just loved the full name. I said that sometimes I might call him "Ben," but that I wasn't really crazy about the nickname "Benny." Now, though, since Zachary calls him that all the time I've started to think it sounds so cute, and I catch myself calling him Benny all the time. He's even started calling himself that when he's around his brother - "bring this to Benny" etc...

Well, Zachary is tired and I must be too because I'm starting to ramble, so I'll end this for now. Please say an extra little prayer for Benjamin for Friday when he has his next MRI and his shunt series. We know he had a clear CT scan last week so that helps to know that, but we never take anything for granted. Thank you for stopping in to check on our little guy!!

Love, The Jones'

Sunday, February 8, 2004 9:45 AM CST

Hi everyone!

Thank you for coming back to check in on Benjamin! Right now he is spending a relaxing weekend playing games and playing with his baby brother.

It was a rough half a week for Brian since he came down with the flu on Wed. afternoon. Fortunately this didn't happen until late afternoon because he had made plans to "meet for lunch" at Benjamin's school since he was working in Reynoldsburg rather than downtown. Benjamin thought this was very cool and was waiting for his Dad to join him, and his little group of buddies, for lunch. Brian called me on his way back to work and gave me an interesting glimpse into Benjamin's school life. Brian sat at a table that was all first graders, and he said he felt like a giant among them - haha! He said that at first "the guys" (as Benjamin calls his group) were a litte bit shy around him, but before long they were chatting with him and passing things to him to help them open up - like juice boxes etc... Benjamin has a hard time with juice boxes and milk cartons ( they are still working on this in OT), but since I knew Brian would be with him today I sent a juice box anyway. As Brian was opening his juice box one of Benjamin's little friends said (like a wise old man)"I used to have a lot of trouble with juice boxes too, and there is nothing wrong with that. I just went home and practiced and practiced - there is nothing wrong with a lotof practice." Brian thought that was really neat how Benjamin's friends don't make a big deal of the things that give him difficulty. This little guy was going out of his way to show that he had had trouble with the same thing. Brian said that it was so funny to watch Benjamin with the kids - he talks non-stop!! We're not sure how he manages to eat all of his lunch and still keep up all of his conversations. Brian has to work on our side of town again next week, so Benjamin is already hoping for another lunch date. His school really encourages having parents come over for lunch - when I called over to check on Benjamin's start time for lunch the lady in the office was very enthusiastic about it.

Unfortunately for Brian after lunch was when the fun ended for him. He called on his way back downtown and said that he was starting to get a headache. By the time he got home he had a horrible headache, a fever, bodyaches, chills and a sore throat. Needless to say, he came home and we didn't see or him from him again the rest of the day. He wasn't feeling well on Thurs. either. By Friday his fever had stayed down for a day and he was much better except for the sore throat and being very tired, so when Benjamin's school called to say that Benjamin had just been brought to the office with a really bad headache I wasn't the least bit surprised. The nurse put him on the phone and he was in tears because his head hurt so bad. I went right over to pick him up, and he looked absolutely wiped out and pale. I had to help him walk into the house because his balance was a little off (a little moreso than usual for him). As we were walking in he started to say something to me and I couldn't understand what he was saying. He was saying words, not gibberish, but the words he put together made absolutely no sense. I asked him what he was saying, and he quickly said "no nothing, nevermind." I didn't think much of it at the time, but now I'm wondering. Soon after we got home Benjamin threw up, and then he fell asleep for over three hours. I kept coming in and feeling his forehead which was completely cool. When he finally woke up his color was back, he was bouncing around and feeling fine, no fever, headache, sore throat or any other symptoms (ugh!) and was ready to eat. We started him out slowly with Pedialytes, just in case, but it was totally obvious when Brian brought home dinner from Bob Evan's and Benjamin ate every bite of his order of pancakes that nothing was wrong with him. Now I keep re-playing the way he talked as we came in from school and the whole episode that afternoon. I'm trying really hard not to hit the panic button, but it is so hard not to. Benjamin hasn't had a headache (except for his bought with the flu in Nov., but at that time he had a fever and all the other symptoms so I knew not to worry - amazing how happy a person could feel over the flu!) in better than a year, and the way he acted on Friday - the headache, vomiting, and sleeping for hours -was how he acted the week before diagnosis. We know he just had a CT scan last Friday and that was clear, so we can't figure out why he is having these episodes - just a week apart - since nothing like this has happened since diagnosis. The CT scan does help me to stay calm, but I feel like something is not quite right for him to be having these episodes again. The CT scan showed that the shunt was fine, but I'm wondering if something somewhere along the tubing inside him is malfunctioning in some way. They didn't do a shunt series (which scans the whole way down the tubing) so my hope is that this is shunt related (it feels weird to wish for that, but I'll wish for that rather than some of the options). My first hope is that maybe he's reacting in some way to his new thyroid medicine. He's been on it for three weeks now, and I would think he would have had a problem right away if he were going to have one, but maybe it is a build-up reaction, I don't know but anything sounds good to me at this point. People don't just throw up for no reason, and he hasn't done this in so long. I'm going to call Suzanne in the morning to make sure they are aware of what happened on Friday. I would have called that day, but of course by the time we realized that nothing was wrong with him it was after hours and headed into a weekend. If Benjamin had showed any more symptoms this weekend we would of course call the Hem/Onc doctor on call, but he's been fine ever since. We're just reminding ourselves that weird symptoms can have innocent explanations, but I'll feel alot better when he has his MRI on Friday.

Other than that we are just staying quiet this weekend. It is so cold so it's not like there is much else to do. The boys are having fun playing together and we've been spending lots of time coloring, reading and playing games. We stopped over to check on the new house yesterday and they have been working inside and the outside is getting closer to being finished. They started the siding, the roof is done, the front door is on, and they poured the concrete in the garage, so it is really coming along. Those guys working must be so happy to work inside now because the weather has been just awful this winter!! We've had such cold, cold days!

Well, I probably won't update again until Friday after his MRI. Please keep Benjamin in your prayers this week and especially on Friday morning when he starts his scan. We're hoping that he can be in and out of there because we found out his class Valentine's Day party is that afternoon at 2:00pm. He is so excited for this and he's had his Valentine's ready for over a week! He picked out the Ninja Turtles for his Valentine's this year, but he asked Brian to pick up the Disney Princesses Valentine's as well so he could give those to the girls in his class. I asked him why he wanted two sets and he said "I didn't think the girls would like the Ninja Turtles!" What a sweetie!!

Love, The Jones'

Tuesday, February 3, 2004 1:48 PM CST

Hi everyone!

We just wanted to thank everyone for the e-mails and guestbook entries about Benjamin's scare last week - we really appreciate the care and concern! The good thing that came out of all that was that Brian and Benjamin were able to go out of town to Dayton together for a "guys weekend" and enjoy themselves without the anxiety hanging over them.

The guys went to Dayton Sat. afternoon, and after settling in at their hotel, they went over to watch wrestling. Brian said that Benjamin was so into it - jumping around and cheering - he was so excited to be there. Benjamin came home with a mask and a wrestling belt, and he has been proudly wearing them around the house for days. He is very kind to his baby brother, though, because Zachary is afraid of the mask. He takes the mask off when he's around the little guy. We were thinking that this morning might be a delayed start to school or else a day off because some bad weather was supposed to come through, however, things were fine this morning (rainy, but otherwise fine). I told Benjamin that there wasn't going to be a snow day today, but he said he was hoping for school because he had asked his teacher if he could bring in his mask and belt, and they were already packed in his back-pack.

There isn't too much planned for this week, but the rest of the month should be pretty busy for Benjamin. Next Friday is his next MRI so he will have to miss a day of school for that. Unfortunately this day is a special day at his school - it is Donuts with Dad day for the kids whose last names begin with A-L. I wrote a note asking if he could go with the next group, though, and hopefully he will still be able to enjoy this day with his Daddy on the following Friday with the M-Z group. He also has two Tiger Cubs den meetings this month which he is really looking forward to. They are meeting at the home of one of his best buddies so he can't wait to go over there. They are getting ready for their big banquet for "stepping over" to the next level so that will be a big deal.

Then at the end of the month we found out his school is having a Snowball Dance. We don't know the particulars on this event yet, but Benjamin is terrified he has to bring a date. We had to laugh because he was getting so worked up about the whole thing. I assured him that a dance for K-second grades wouldn't make bringing a date mandatory. Brian and I figured that it is probably something like the girls bring their dads and the boys bring their moms or something like that, but we don't know. We are VERY interested to hear more about this, but Benjamin is disgusted by the whole idea - he's convinced he has to dance with a girl - OOOHH, cooties - he's still at that stage haha!!

He is really enjoying his CCD classes at church every Sunday. I was amazed that he and his Daddy made it back from Dayton that early, but they set their alarm so he could go to his class. We're so glad that he's back involved in so many things now - he is really making up for lost time from last year.

So far he is very happy with his new situation at school for his reading and math classes, and we are really pleased with some of the results we're seeing so far. He brought home two math papers last night and he had scored in the 90's on both of them. As a part of his IEP all tests must be read to him and that is making a huge difference. His spelling is coming along as well. He has extra work every night, and at times it is frustrating for him because he used to be finished with homework earlier. We told him that while we understand that he would like to finish up and move on to playing, this extra work is really important and it is helping him. For example, while before to prepare for a spelling test we just went over the words over and over to practice, now he is given a set of three or four worksheets that go over the concepts in spelling that needs to learn (like when to put an "e" at the end of a word for long vowel sounds, etc...) and then we go over the words on his spelling list several times. While it is time consuming, he even admitted that he could see immediate results. He just really needs that repetition to reinforce concepts in his memory. He is also happy with his therapists that work with him at the school. For the time being he also going to continue with Kathy, his PT therapist at Children's, on the off-weeks when he doesn't have PT at school. He was really happy about this because he hated to say good-bye to Kathy. He has been discharged from OT at Children's, which made him sad not to see Karen, his OT therapist, but Karen said that he could come back for summer OT at Children's if he wanted to. He jumped at that suggestion immediately! We're going to go up to say good-bye to Karen after his MRI next week before we report to the clinic.

On another matter, Benjamin is now swallowing pills for his thyroid medication!! Now that may not sound like a big deal, but this kid's gag reflex was so touchy before - it didn't take anything to set it off for quite some time. When he took some medications that were crushed in yogurt or applesauce he even gagged because he could feel the texture through the disguise. We think that it was because he threw up several times daily for months on end, so I guess his gag reflex didn't recover for awhile. Fortunately the pills are little, and he is able to get them down with no difficulty - and he thinks he is such a big guy because he can finally do this. We hated to add a new medication to the mix after finally whittling the list of meds. down to one daily medication, but we have noticed some really good things since he started this pill. The biggest improvement is that his appetite has increased - alot! He is asking for snacks after school and before bed, and he is doing a good job on his regular meals during the day. He's also asked me to start packing an extra snack in his lunchbag for school every day. Benjamin is still a string bean, but being lean maybe is just his body type - it is so hard to tell. We don't know if the increased appetite is a side effect from the pill (we heard that was possible) or if it the pill's effect on his thryoid. Either way, the kid is eating, and that is all we can ask for. When I was a kid I never could figure out why grown-ups were always trying to get us little kids to eat more and have another helping, now I've become the person saying "you need to eat a little more" - haha!! The less pressure we put on him, the better he does, so we try not to hang over him and urge him on.

Other than that, there isn't much new with us. As I'm checking the clock I see it's time to go pick up Benjamin from school. Zachary is running around the house saying "go get Benny, go get Benny!" I think he goes through "Benjamin withdrawal" when his big brother is gone. He's always eager to go pick up B. I better go help him clean up his mess - he had coloring books, papers and crayons out and he is picking them all up and throwing them in the other room saying "I'm put away toys!" Things are everywhere now!!! Thanks for checking in on Benjamin and for remembering him in your prayers. Please remember the kids listed above and below on his page as well. Thank you so much!

Love, The Jones'

Friday, January 30, 2004 12:37 AM CST

Hi everyone!

All I can say is that there are many sighs of relief and thank-you prayers being said around here after we had an awful scare with Benjamin yesterday.

As many of you may know, before Benjamin was diagnosed in May 2002 he was having symptoms from Feb. 2002 until his diagnosis. Actually he really only had one symptom right up until the week before diagnosis, and that symptom was early morning vomiting. These episodes would happen completely out of the blue - Benjamin would wake up, feel totally fine, eat breakfast, and then shortly after eating he would either say "I feel icky" and then get sick or he just threw up with basically no warning. He never experienced other symptoms of a brain tumor until the week before he was diagnosed, and then he started having headaches and began losing his balance. The vomiting episodes started out only happening every few weeks, and as time went on the episodes began happening with more frequency. We had many trips back and forth to the doctor and two trips to the emergency room before we heard the awful news, but for the whole three months all the doctors we saw believed his problem was more related to allergies and sinus problems and post-nasal drip. We tried to convince ourselves that nothing was seriously wrong, as well, since in between the vomiting episodes Benjamin seemed just fine. Obviously that didn't turn out to be the case, and since that time of diagnosis, surgery, treatment and now life after treatment we have kept our guard up to watch for any signs of relapse. For quite some time after surgery Benjamin still had vomiting episodes and our doctor at Children's explained to us that that is completely normal for children who have had this type of tumor and been through the treatment Benjamin had. Gradually over time the vomiting tapered off from several times daily, to once a day, to a few times a week, and as time passed the vomiting stopped altogether.

Then yesterday morning Benjamin woke up, got dressed and had his breakfast as usual. After eating he said "I feel icky" and he went in the bathroom and got sick. Amazingly enough I didn't immediately jump to conclusions and I really didn't think about cancer. I figured he had a bug and we'd just let it run its course. My heart sank as minutes later he was completely fine again, was bouncing around and asking for spaghettios. Now I know that right after getting sick you usually have an hour or so grace period when you feel pretty good again, but who wants spaghettios?! He had no temperature, no nausea and felt great. Then my mind jumped right to "brain tumor!!" It sounds silly to say it, but I kept hoping that he might develop a fever or throw up again because while I never want my kids to not feel well, at least if he got sick again I could chalk this up to a bug. The whole thing felt way too familiar and sickening. As far as Benjamin was concerned we kept up the idea that he probably just had a bug.

I called Brian at work and then I called Benjamin's nurse practitioner, Suzanne. She was very patient and reassuring and understood that it was hard for me to hear that kids sometimes do strange things when we had heard that so many times before when Benjamin was throwing up off and on over the course of three months. She told me not to panic yet and that if we are noticing any other problems or if the vomiting repeats she would get him in earlier for scans. Benjamin is scheduled for his next MRI two weeks from today (Feb. 13th). Suzanne knew that while Feb 13th is only two weeks away, when you are scared out of your mind, two weeks might as well be forever.

Brian and I didn't sleep well last night, as you would expect, and we had planned on calling back to Children's this morning to find out if it would be possible to move up his scans or at least have a CT scan run. Our fear was that if this was a relapse of the tumor, then it must mean that it had grown very quickly (his last MRI was Nov 7th and he also had a CT scan in Dec. because he fell at school and landed on the shunt). We were so scared that if this were the case then what would happen growth-wise over the next two weeks. God Bless Suzanne because before we called in this morning we received a call from her to check on Benjamin. I asked if it would be possible to get some kind of scan done earlier, and she said that she could definitely get a CT scan for him this morning and possible even an MRI if necessary. Benjamin is always sedated for his MRI's, and she explained that since sedated MRI's take longer he may not be able to get on the schedule, but she would do what she could. She told us to come in as soon as we could be ready.

We certainly didn't want to scare Benjamin so I told him that since he'd had that little throwing up episode yesterday we should probably have his shunt scanned to make sure it's working OK. While I never wanted him to have this shunt, anytime we've had any fears about what is going on inside his head we've been able to use the shunt as a diversion for him. He's not afraid at all to have pictures taken of the shunt so we tell him that we're having it checked. When he has his MRI's we tell him that they are checking the shunt (which is true) and they're also going to take a peek at where the surgery was to make sure it is all good. It is also true that if the shunt has a kink in it or is malfunctioning Benjamin would have the same symptoms we'd watch for as we do for a relapse. Unfortunately there is no way to tell which is causing the symptoms unless you have a scan. Brian and I kept trying to tell ourselves last night that this could just be the shunt, but the whole thing felt like before and coincidently it has been almost exactly two years since his symptoms of vomiting episodes first started.

Benjamin was in such good spirits today because he got another snow day, and he was bouncing around the house, laughing and joking, and we all joined in with him on the outside. Inside we were nervous wrecks. It is really strange sometimes how surreal life can be. We were all running around getting ready to go and being silly and in good spirits, but I have to admit that I was getting myself ready to hear news that would blow us out of the water. I couldn't really believe that this could be nothing when before it had been so far from "nothing". Headaches, throwing up and tripping and falling are sinister to me instead of innocent.

We were very lucky when we got to Children's - we got right in for the CT scan and then we reported upstairs to the Hem/Onc clinic where we had barely a wait. It was so nice to see old friends up there who we now only see on well visits. I can't tell you the relief and surprise we felt to hear Suzanne say "everything is fine!" The shunt is fine - no kinks - and the posterior fossa area (where his tumor was located) was CLEAR!!! You could have knocked me over with a feather because I had myself steeled to hear the worst - I told Brian last night that I never want to feel blindsided like it was May 2002. We don't really know what made Benjamin react as he did yesterday, it could just be one of those things, but as far as what is going on inside his head, at this time, things are OK. Suzanne teased Benjamin that he just had to keep his Mommy on her toes. I think he has added several gray hairs as well - haha! We so appreciate Suzanne's and Dr. Olshefski's efforts to get Benjamin right in and scanned and the peace of mind it has brought us. There are no words in existence that sound as good and mean as much as hearing that Benjamin is doing fine. Benjamin was thrilled that we were in and out of there (he has no idea of the weight of what was happening today) so quickly so that he could still enjoy the bulk of his snow day, and we were relieved beyond belief. It felt so good to come home and jump into a hot shower and cry my eyes out with thanks and relief - that did wonders for the splitting headache I woke up with - haha! This was definitely a lesson learned because now I know not to panic at an episode like yesterday - it is possible for things to really have an innocent explanation. We go in for his next scans in two weeks, and while we will always have a healthy respect for these scans, it does make it a little easier to get through the next two weeks.

On a totally different note, Benjamin is so excited because tomorrow he is going to watch pro wrestling with his Daddy. I think I wrote before about how Brian had tickets for him last year at this time, but Benjamin was admitted and unable to go to the show. Brian promised him that when he was all done with treatment they would get the best tickets they could and make a night of it. Tomorrow night is the night!! I'll update more after his big night out with his Daddy.

Thank you so much for checking in on Benjamin, and please say an extra little prayer for him as he gets ready for his next scans. I'm off now to check in on the pages of Benjamin's little friends. Hope it's a great weekend for you all!!

Love, The Jones'

Sunday, January 25, 2004 4:30 PM CST

Hi everyone!

**New Update Monday Jan. 26th: SNOW DAY!! We got six inches of snow last night, and Benjamin got his first snow day! By 9:15pm last night school had officially been cancelled for today, and since Benjamin was in bed, but still awake (too much anticipation!!) I went in and told him that he could sleep in. We'll have to get out there to play in the snow, but it is still very cold here. There is also talk about a few more inches of snow for tomorrow - yea!! **

Well, we are right at the beginning of a big storm that we are hoping will bring us a snow day tomorrow. Don't get me wrong, Benjamin loves first grade, but he has never had a snow day (since he missed the whole kindergarten year last year), and he is so looking forward to the magic of a "snow day!" We have had little or no snow all winter so far, but it is really coming down out there right now, so there is hope - haha!

Benjamin had a great rest of the week at school, and we are all happy so far with the changes that are in place for him since his IEP was started. He really likes his teacher for reading and math, and he has had very positive experiences with her classes. He took a test on Friday (on the computer) and was just as proud as can be to come home and tell us that he got 100 points! Now we're not sure yet if this 100 out of 100 (like 100or 100 out of X amount of points, but regardless, Benjamin was thrilled and he said that his teacher told him that he did very well. I'm sure we will hear more about this next week. He was also really excited to find out that one of the boys from his Tiger Cubs den is also in this class.

Benjamin had a Tiger Cubs meeting on Thursday night, and he had a lot of fun making a paper mache' figure that he is supposed to decorate at home. They also had their final instructions before the big Pinewood Derby. Benjamin and his Daddy have been working on his car for a while now and it turned out really neat. He painted it green and decorated it with stickers to make it look like a python - very cool!

On Saturday morning Brian and Benjamin got up early and headed over to the school for the Derby. Benjamin's car ended up doing really well! In the first heat Benjamin's car came in first place! He raced in a few more heats and Brian thinks that his car came in fourth or fifth place overall at the end of the day. Benjamin was so surprised because he said he never thought his car would do that well. It was a really nice boost for him!

Well, Brian just came in from the car and said there is a white-out out there, so the boys are even more excited!! Brian and I are from the snow-belt so we really miss seeing so much snow, and poor Benjamin is always jealous when he talks to his grandparents and hears how much snow they have up there - haha! That is about all the news here for now. Thank you for looking in on our guy!!

Love, The Jones'

Tuesday, January 20, 2004 4:39 PM CST

Hi everyone!

I hadn't planned on updating again so quickly, but today was the meeting at Benjamin's school, and since everything went so well I thought I would update. This afternoon I went over to his school and met with about 10 people from Tussing Elementary and a plan is in place - everything is set to roll for tomorrow. Benjamin was given IQ tests, and he was evaluated for OT, PT, and APE(adapted phys. ed), and each one of these people who did the evaluating, plus the school psychologist, the spec. ed. coordinator, the special ed. teacher, Benjamin's first grade teacher and the principal all gave reports and input. Benjamin will be receiving both PT and OT at school which is wonderful news, but sadly that means he will be finished receiving these services at Children's Hospital. He has grown very close to Kathy (for PT) and Karen (for OT) over the past year and I know he will miss them very much. He will have PT every other week and OT weekly, and he will also have APE once a week for 30 minutes. At OT he will be working on tying laces, buttoning, snaps, and really concentrating on his handwriting. For PT they are going to help him continue to work on his balance issues and building his strength. They are also going to work on situations that are fitting for inside the school setting like balancing a lunch tray and getting up the steps on a bus. I've been sending a packed lunch for Benjamin all year because at this point he just can't balance things on a tray, and we didn't want to set him up for frustration. He did ride the bus for a just a few days at the beginning of the year, but he practically had to crawl up the steps of the bus to board it, and I don't think he liked having to do that. Everyone's goals are to help him reach his potential and if he is still having difficulties then they will work on adaptive strategies with him.

As for his IQ testing he scored very similarly as to how he did at Children's last spring. His verbal and nonverbal scores are average, but his spatial scores are borderline and therefore are pulling his overall score down. Mrs. Fortenbacher (his first grade teacher) told me that she can tell he is learning and understands so much, but when he tries to express what has learned (from pen to paper) he is hitting road blocks. He qualified under the category of Traumatic Brain Injury, and consequently he is eligible to receive a wide variety of services. In addition to receving the PT, OT, and APE he will be spending an hour to an hour and a half a day with the special ed. teacher working more one-on-one for reading and math. He will still spend he majority of the day with his first grade class - science, social studies, phys. ed., lunch, recesses, library, etc..., but he will be getting the extra help he needs in the areas where he is weakest. This all was such great news!! They asked me when I would like for the services to begin and I asked when the earliest time would be. Today was an early dismissal day and by this time in the meeting there was only about 15 more minutes of school in the day. They told me that it was a little bit too late for today, but how did tomorrow sound to me? I couldn't believe we could get rolling already, but tomorrow is the day. We talked about all of this with Benjamin after school, and he is really excited about it all. The only things he is sad about are not seeing Kathy and Karen anymore and he won't have reading class with his special reading teacher anymore.

He is really excited, though, because we found out that even though we are moving out of the Tussing district (still the Pickerington City Schools, though) we can go through open enrollment and keep Benjamin at Tussing Elementary. While we were so excited about the move we were all disappointed that he would have to switch schools next year. When I mentioned this at the meeting Principal Wilkinson said he would be really sorry to see Benjamin go, and he asked if we had thought about open enrollment. When I told him that we would be very interested in that option he gave me the paperwork to sign him up. We will still have to wait until August to see what the final numbers count will be at Tussing, but as long as there isn't overcrowding in the second grade, Benjamin should be able to continue on at the school he loves. Brian and I are so happy about this because Benjamin has adjusted to being in school even better than we had hoped, and we totally credit the staff at Tussing - they are so great!! Benjamin seems to hold a special place in so many hearts over there - I've had many members of the staff tell me that they keep an extra eye on him because they think so highly of him and they know everything he has been through. We really appreciate this care!! We'll just keep praying that the numbers are good (and so is his health!!) and he can go back to Tussing as a second grader next fall!

Well, that's the end of my longwinded story, but it has a happy outcome for Benjamin. We hope this helps him strengthen his skills and keep his confidence high. After all he's been through I wish I could just write him a free pass for an easy life, but no one gets that. He's going to have work really hard, but he has a great attitude and a tremendous amount of support from family, friends, and his school.

Thank you for checking in on our little man!!

Love, The Jones'

Monday, January 19, 2004 3:01 PM CST

Hi everyone!

Hope you had a great weekend! We had planned to be in Ashtabula this weekend to visit all our family and be at cousin Ashley's 5th birthday party, but Brian had some deadlines to meet for work so we had to stay here. Gramma and Boppa (Benjamin's name for my Dad since he was a baby) Beebe came down for a visit instead so we had lots of fun visiting with them. This was the first time they were able to get down since my Dad's surgery this fall, so it was just like old times! My Dad brought down lots of yummy food and my Mom brought a big cooler filled with snow as a surprise for Benjamin. Benjamin has been praying for a snow day since winter first began. He really does like school, but since he didn't attend kindergarten last year because he was on treatment he has never had the experience of a snow day. We just havn't been getting any snow here, but Ashtabula has tons of snow. So Gramma brought a little of it down here to share, and Benjamin had a ball throwing snowballs at anyone who came within a few feet of him. We had a lot of fun this weekend catching up with each other.

Benjamin and his Daddy have been hard at work on Benjamin's car that he is entering in the Derby for Cub Scouts next weekend. They have been cutting and sanding and will soon be ready for painting. His race is this coming Saturday, so I will be sure to update on how the it all goes - he is very excited!

Today was a day off because of the holiday and the rest of the week is a short one for Benjamin. Tues., Wed., and Thurs. are early dismissal days, and he has Friday off as well! Tomorrow is my meeting at his school to go over the testing that was done to see if Benjamin has any learning disabilities and to see if he will qualify to receive OT through the school. We are very anxious to hear the results of the testing and to hear what recommendations will be made to help Benjamin in his learning. He continues to work very hard, and we are slowly seeing improvements in reading and spelling. He did VERY well on his first spelling test - he only missed one word! We were very pleasantly surprised because spelling has been a challenge for him, but he worked really hard to prepare for the test. He had his second test last Friday, but we don't know how that one went yet. We've told him, though, just to do the best he can and that is all we're concerned with.

We took a ride over to the new house today with my parents before they left, and we were so happy to see that the framework for the house is completely up and they are getting ready to start of the windows! That was a wonderful surprise as we pulled onto the street to see an actual house standing there! Benjamin loves to walk around the outside of the house and check on the progress.

Other than that, not much is happening around here. Zachary is talking more and more - he turned 21 months old this past week!! He loves to color and play with Elmo - he is a huge Elmo fan. He runs all over the place after his big brother yelling "Benny!" Benjamin has all of his video games and toys with little pieces back in that master bedroom here at the apartment and that is his escape from the little man. He runs in and shuts the door and then Zachary comes following behind as quickly as he can to try to make it in the room before the door is closed. Then he stands there and cries "Benny - he shut "de" door!!" and the tears flow. They are quite a pair!

Thank you for checking in on Benjamin! I apologize for not getting back to people who have left messages in Benjamin's guestbook. We are having big problems with the guestbook. We can't get the guestbook to come up at all, and my Mom has been reading the entries to me over the phone to help me catch up. Hopefully we'll have the technical difficulties straightened out soon - haha!

Love,

The Jones'

Monday, January 12, 2004 1:35 PM CST

Hi everyone!

We hope you had a good weekend! We had a nice, peaceful weekend, which was so nice after the big move last week. It was great to sleep in and not worry about packing or unpacking.

Benjamin got the weekend off to a big start by going to the monster truck rally on Friday with his Daddy and some friends of ours. I got a call from Make-a-Wish on Friday afternoon because they had extra tickets for the rally, so Benjamin brought his little friend Buddy and his Daddy. We were worried about how Benjamin would be able to handle the noise this year because last year it was too loud for him. We thought he would probably be alright, though, because he has been fine at Blue Jacket hockey games and basketball games, and last year he couldn't handle those either. Brian said that the boys had a great time, and the noise was no problem (Benjamin had on headphones that made him look like he was directing flights at the airport). Benjamin was also really excited to see the Thomas family at the rally (Ben's link is at the bottom of Benjamin's page), and they also brought another little boy that Benjamin plays with at school every day. It was kind of funny that most of the kids there were from our neighborhood. Make-a-Wish really makes this a nice event for the kids - Benjamin had such a good time and he came home with an armful of toys for himself and his baby brother.

The rest of the weekend was pretty quiet. Brian did order tickets for WWE in Dayton at the end of this month for him and Benjamin. They had planned to go to WWE last year, but Brian had to give away their tickets when Benjamin ended up being admitted for fevers. Benjamin was so disappointed so Brian promised him that when his treatment was all done and WWE was back around they would go together. Benjamin didn't really know alot about wrestling before he got sick, but right about the time he was diagnosed he started getting interested in the wrestling video games and the action figures. He brought the games and the action figures up to the hospital and we could always tell how bad he felt by how "hard" the wrestling action was. Some days he played the games non-stop and really crashed the figures together - those were bad days. Then he'd go quite awhile without playing the games or taking out the figures - we knew he felt good then. When we asked him about it he said that he could take out his bad feelings on the wrestlers. One of his doctors once joked that he probably pretended one of the characters was the doctor. Well, anyway a year has gone by and WWE is back around, and this year they are going. Brian was able to get really good seats, too - they are right down on the floor. I hope he enjoys every minute of it since he had to wait a year for it!

I received a call from Benjamin's school that his testing has been completed for evaluating whether he will qualify for OT through the school and if he has a learning disablity. The testing is done, but the reports aren't quite ready, so I will be going in for the meeting next Tuesday. We're very anxious to hear the results of the testing, and to find out what recommendations will be made for extra help for Benjamin. His reading has improved, but it still is not where it should be for his grade level. He tries so hard, and we do alot of reading homework every night. I can see that he is more comfortable since school started, but he has a long way to go. His spelling is getting a little bit better too. He had his first spelling test this past Friday, so we'll see how that went. He studied so hard, but there were some words that no matter how many times we went over them it was like it was the first time he had the word. We just told him to do the best he could and not to worry about the grade. I told my Mom that I really didn't care how he did on the test. I guess that might sound bad. I do care about how he does in school because I want him to learn as much as he can and do as well as he can, but on the other hand, after spending so much time worrying about whether he would live or die, somehow grades just don't mean a lot. As we're approaching scan time again I think that also puts things in perspective as well. Whenever scan times come up I make as many "bargains" or promises to God that as long as the scans are clean I will be grateful for that and not worry about the small stuff.

Benjamin has been doing really well otherwise. He has had a rough adjustment to getting back in the school routine,though. Every day last week he forgot some piece of homework, and he has been awfully forgetfull at home, too. Things like going in the bathroom and leaving the water on after washing up, going in the bathroom to get dressed for school or bed and coming out two seconds later without accomplishing anything, and not remembering to do things right after being asked has happened several times a day for the last week or so. We're trying not to worry too much about that. He did have two weeks off from school for Christmas break, so he went from a very structured environment to complete chaos (with the move) for a while. I was hoping that by this week he would be settling back in, though, so we'll see. Again, while these things bother us because we worry if these are just typical seven year old "too busy to remember" things or if they are reactions from radiation, I will take this ANY day as opposed to losing him. This also always happens to Brian and me as we get close to scans - we worry that every little thing is a sign of something bad. The first couple months after scans are over are wonderful and we feel like we have a little security net there, but then that last month is more tense. This time after his scans at the beginning of Nov. was even nicer because usually we get a call about a week after the scans to let us know when the next scans are. I know that they have to schedule the MRI's way in advance, but the "happy bubble" kind of bursts a little bit when that call comes in. Then we have a new date to focus on, rather than enjoying the good news. This last time though we didn't get a call - the clinic had been trying to reach us, but they weren't able to - so we went into the holidays with only the holidays to focus on. It was wonderful!! Just before Christmas I realized that all that time had gone by, but we hadn't heard anything. I told Brian that maybe it was wrong, but I was going to call after Christmas to find out the date - ignorance is bliss!!! Anyway the new scan date is in one month - Feb 13th.

The kids have settled in at the apartment - better than I thought they would! Benjamin has had a few nights where he was a little sad and has said that he misses our house. I can't blame him since he was two when we moved in there and that is the only home he knows. I told him that in just a few months, though, we will be in the new house and since it is based on the same model as the old house it will feel so familiar for him. We took a ride over to check on the new house on Sat. and we were very surprised to see that the builders are ready to start the frame of the house this week!! Benjamin was getting really sick of going over to look at "our hole in the ground" as he put it, but this time he was really excited, and he got out of the car and walked around the house with his Daddy. We can't wait to see how things look next Sat. - we are limiting ourselves to once a week visits so we can see big progress - haha!! It is nice and cozy here at the apartment, and we're enjoying it here while we wait.

Well, that is about all the news here. Thank you so much for your continued prayers for Benjamin and all the other kids who are going through treatment.

Love, The Jones Family

Sunday, January 4, 2004 11:46 AM CST

Hi everyone!

We hope you all had a happy and safe New Year! We spent New Year's Eve and the next couple days moving out of our house and into our apartment where we will be living for the next few months until our new house is finished. We only moved less than a mile down the road, so that made the move so much easier - we just kept loading up the truck and our car and made lots of trips back and forth. We were so lucky to have several friends give up a couple hours on New Year's Day to help us move the heaviest furniture. We tried to do the bulk of the moving ourselves so our friends wouldn't have to be away from their families for too long on the holiday. We really appreciate all the help they gave us!! We finished all of our work late in the night on Friday night - Brian was over at the house getting the last little things and making sure everything looked nice for the new owners while I got the kids to bed and unpacked the boxes here at the apartment. Our storage unit is bursting and we ended up having to use the second bedroom as a big storage room here at the apartment and each night we set up an air mattress for our "second bedroom" - haha! It will be fine, though, and we feel all settled in here now. I'm kind of enjoying having everything all on one floor now, and I can work in the kitchen and still keep an eye on the baby at all times since it looks out on the whole apartment. The only thing I have to be careful of, though, is that this kitchen is much tinier than at our house and one afternoon when I opened the refridgerator door and then tried to walk around the door I ended up getting myself wedged between the door and the kitchen counter - haha! I told my Mom that I can stand in the middle of the kitchen and turn one way and work at the stove, turn another way and work at the sink and turn another way and get into the fridge - I just have to be careful not try to walk around while I'm doing this or else I'll be stuck again - haha!!

The kids and the cats have adjusted really well to the move, and as of yesterday our new "family member", Benjamin's new hamster Patrick (from Sponge Bob) arrived. Benjamin's nurse, Suzanne, from Children's Hospital brought back Baby Patrick yesterday. Her nephew has a hamster and his hamster had babies just a few weeks ago. Suzanne asked Benjamin if he would like to have one of the babies when she she found out that we had told him that he could have one since we had to find a new home for Emma because of Zachie's allergy. Little Patrick is so cute and Benjamin is just thrilled with his new pet! He and his Daddy went out yesterday and bought a big cage, a plastic ball, and some food for the hamster.

Benjamin is also really excited because we received a phone call on Friday from Make-a-Wish inviting him to the Monster Truck Rally this coming Friday night. Benjamin went last year, but his ears were still so sensitive that he really couldn't take the noise. This year, though, he has done fine at hockey games and basketball games (which he couldn't handle either last year) that we're hopeful that he will do fine at the rally. Brian is going to get some ear plugs anyway, and hopefully it will be a fun-filled evening for him. He had a ball last year (before the noise started) because the kids get to go in early and have a backstage tour and even get inside one of the Monster Trucks. Last year he really wanted to go inside the Spider Man truck, and that was the truck they let all the kids get inside. Make-a-Wish really goes all out to make the evening so special for the kids. The kids and their families get to sit in special box seats, a huge buffet is put on before the rally starts, and as you walk into the box off to one side they had a whole pile of toys and trucks for the kids to take home with them. You should have heard the shouts of joy from the the kids when they saw that last year - you would have thought it was Christmas again - haha! I'm really excited for him to go to this, and I just hope his ears can take it this year. It is so unbelievably LOUD! I had never been to one before and the noise and the vibrations are so tremendous it feels like your heart is pounding outside of your chest. Benjamin really enjoyed watching the kids racing the four-wheelers before the rally started too.

Well, Christmas vacation is over and it is back to school for everyone here tomorrow. We're going to have to hunt around tonight for Benjamin's back pack - I havn't seen it for days! He is excited for share time tomorrow to tell his friends that over his break he moved out of his house and he got a hamster. He also has an eye appt. and PT tomorrow. This past week we also made a run in to visit the endocrinologist for Benjamin's first appt. in that office, and as expected his thyroid is starting to fail. This is something we knew would happen, and relatively speaking, is not something we have been worried about. It is certainly much easier to deal with than the medical news we've had in the past. It is also easily remedied - he just has to take a little pill every day and that will take care of it. We're not excited to add a new medication to the list - especially since we had gotten Benjamin down to only having one medication to take daily (down from five to six), but in the big scheme of things this is nothing major! We'll take it!

Now that our computer is back up and running we can check in on the other little kids' web pages that we look in on. So many kids were really having a tough time over the holidays and their families were struggling with bad news and setbacks. Our hearts really go out to them - I can't imagine how hard the holidays must have been for so many of them. Please remember these other children in your prayers as well - it is so awful what they have been through.

Thank you for checking in on our little guy - we so appreciate your support!

Love, The Jones Family

Sunday, December 28, 2003 8:36 PM CST

Hi everyone!

We hope everyone enjoyed the holidays with their loved ones. We just returned this afternoon from Ashtabula where we spent a fun-filled past few days with our family. We had a rough start trying to get out of here on Christmas Eve, though. I don't think too many people must have spent Christmas in the Columbus area because it seemed like everyone was on the road trying to get out of Columbus! The weather was not nice either - we only made it about an hour from home, and we passed more cars that had spun off the road and more accidents than we could keep track of. We finally decided at that point - when we were only going at about 10 mph (with over 100 miles still to go) that maybe we should turn back and start out again in the morning. We traveled back to Columbus (no traffic on that side of the road) very slowly because of the ice, and by the time we made it back most of the grocery stores had closed for the holiday. We were lucky that UDF was open, though, and we had a Christmas Eve picnic of hot dogs, mac-n-cheese, and potato chips - haha! Still, it was fun and we felt much better to be off the roads.

Benjamin had a great time getting ready for Santa's arrival - he put out the special cookies he had decorated with Amy Brinda (Nancy's daughter - Nancy was Benjamin's tutor while he was out of school the whole kindergarten year), and he made a special cup of hot chocolate for Santa. He was so excited and very eager to go to bed extra early. He was also very concerned with when we were going to bed so we wouldn't hold up Santa. His real worry was whether or not Santa would know where to find him since we had planned to be in Ashtabula for Christmas morning. I told him that when we visited Santa last weekend (at the mall) I whispered to him that Benjamin would either be at his house or up in Ashtabula, so Santa was going to leave some surprises at each place. Benjamin was satisfied with that and off he went to bed.

Amazingly enough Benjamin didn't get us up at the crack of dawn - he slept until around 8:00am, and then he and his little brother dove into the presents. After present time and a little breakfast we packed the car and tried again to get up to Ashtabula. Fortunately we able to make it out with no problems this time and we had a wonderful dinner at Brian's parent's house as soon as we got into town. Benjamin, Zachary, and their cousins Ashley and baby Ashton had a great time playing and opening gifts.

On Friday night a new tradition was started with our little family and Brian's brother's family and his sister's family - we all went out to dinner at a nice restaurant and had a great time catching up with one another. Then afterwards we went over to Brian's parents' house and the kids played some more.

On Sat. we had present time and a wonderful dinner with my side of the family. My sister flew in from Chicago on Friday afternoon and my Grandma came down on Sat. morning so we could all open gifts together and then spend the afternoon together. It was such a fun day! We don't get to see Aunt Kate too often so it was great to visit and the kids loved playing with her and Gram. Then on Sat. night Benjamin and his Daddy went to the movies with his cousins- they saw Elf and really enjoyed it!!

We weren't sure if were going to be able to pack the car and still fit ourselves in it, but we made it - haha! The kids have spent this evening having a ball with their new toys. Zachary now gets the connection between Santa and toys, and he is very impressed - he likes Santa now!

Overall the best part of this Christmas was enjoying every minute of the time we spent with the kids and our family. Last year we had a wonderful time with everyone, but in the back of our minds every minute was how sick Benjamin was. We tried to keep our spirits high because we wanted Benjamin to be happy, but in our hearts it was really hard. Every holiday and birthday was hard last year while he was in treatment because of the fear of what the next year would hold. I can honestly say that while Benjamin opened presents at our house on Christmas morning and when we celebrated Christmas with our families I never once gave a thought to Benjamin and "cancer." Last year it was all I could think about, but the only time I thought of it this year was at the end of the day when I realized that I had gone the whole day NOT thinking about it!! The day was normal - just like all the Christmas' before he ever got sick. I just watched the joy on his face, not signs that he was sick. Last year at this time I couldn't imagine ever feeling this way again, so this was such a wonderful surprise. We still have MRI's every three months and other reminders of what he went through, but this Christmas we could just appreciate having a little boy who was having the time of his life doing just what all little boys and girls should be doing at Christmas. We are so thankful!!

While we are so thankful, my heart truly goes out to so many families who lost their precious little ones this year. There were many families connected to CaringBridge who faced heartbreak at the holidays - sadly there have been many children who passed away in just the last few weeks as well. There are many children who started treatment around the same time Benjamin did who are still in treatment now. I will never in my life understand this disease, but I guess we have learned to be grateful for the little mercies and to just keep going the best we can.

Thank you so much to everyone who has sent special Christmas greetings to Benjamin through his guestbook and through e-mails. We appreciate all of your support throughout the year as well!! Seeing words of encouragement are such a pick-me-up, and Benjamin really gets a kick out of it! Thank you for keeping him in your prayers!

Love, The Jones Family

Tuesday, December 23, 2003 9:12 AM CST

Hi everyone!

Just thought I'd update one more time before Christmas. Benjamin is just now walking down the stairs and it is 10:20am!! He is getting all he can out of Christmas vacation and sleeping in, I guess - haha! I knew he would be tired this morning, too, because we had a big night out last night.

Nancy Brinda, Benjamin's home schooling tutor for kindergarten, and her family invited us over for dinner and a little Christmas party. Benjamin started asking when it would be time to go over as soon as he woke up in the morning yesterday. Nancy made a delicious spaghetti dinner (this is Zachie's new favorite - "sketti!"), and after dinner they had a few suprises for Benjamin. They told him he could pick what he did first - open presents, decorate cookies, or make a gingerbread house!! His eyes lit up and he started jumping around the room all excited. As any kid would, he picked opening presents first. We sat around their tree and Benjamin and Zachary opened their gifts from the Brinda family and Benjamin gave them the little lighted Christmas tree he brought as his gift to them. I got quite a few really cute pictures everybody as they opened presents.

The next thing Benjamin picked to do was play with one of his gifts which was a new Play-doh set, so we sat around the table and played for awhile. Then Nancy asked him if he'd like to decorate cookies - her daughter Amy had been busy baking yesterday, and she had lots of yummy cookies, four different colors of frosting and lots of sprinkles and goodies to decorate the cookies with. He decorated cookies for himself and one for everybody there. He and Amy worked on the cookies for quite some time and Benjamin put away several cookies on his own - haha!

Then Benjamin and Nancy decided to start working on the gingerbread house, but unfortunately it was something that they couldn't do that night because the directions said that you have to wait for an hour between putting up each wall of the house. They told Benjamin to bring it home with him, though, and we're going to work on it today. It is the cutest house! Benjamin tried his best to convince me to let him spend the night at Nancy's to keep working on it. He kept coming over and whispering to me "can I just spend the night here? Why don't you guys go home and I'll stay here tonight." It was so sweet - he's still very close to her!

We had such a nice time at their house and Benjamin and Zachary played and played, so I knew that they would sleep in this morning. Before he went to bed last night he said that he feels like they are our family down here (we're the only ones from our family living down here), and I thought that was so sweet, and I have to agree! Benjamin is awake now, but he's moving very slowly!

We don't have much planned for today except to work on the gingerbread house, and I'm going to try to get things gathered up for our visit to Ashtabula for Christmas. It's going to be so much fun to see everyone and have a relaxing holiday. Our house right now looks like a tornado went through it. You would think that since we moved so much out of it last weekend (to storage) that things should look bare around here, but the boys (well, mostly Zachary)have found that this gives them more room to spread their toys around. Zachary is very into coloring right now so from the time he wakes up until the time he goes to bed there are crayons and papers (his "work" as he calls it) from one end of the house to the other. It is nice that we have the next week or so to gather things up. The new moving date is New Year's day!

We can't wait to see everyone when we get back to Ashtabula! We'll have a few extra days than we usually get so we'll have more time to visit. On Friday night our little family, Kim, Tim and Ashley, and Chris, Adria and baby Ashton are all going out to dinner. This is the first time we've all gone out together and we're really looking forward to it! Brian's birthday and his brother Chris' birthday are both on Christmas Eve (not twins, though, they were born two years apart) so this will be a really fun way to visit and celebrate birthdays and Christmas. Brian's family is having their Christmas dinner on Christmas and my side is having their dinner on Sat. to allow us all to be together to celebrate when my sister flies in from Chicago. Unfortunately her boyfriend Greg won't be able to make it this time, but hopefully we'll see him on the next visit! I don't think we'll be seeing any snow this year though. We were hoping that the snow belt might have some since it supposed to be relatively warm here in Columbus, but they are having a little bit of a warm spell as well, but that's OK, we're just looking forward to seeing everyone!

We hope you all have a really Merry Christmas and enjoy the time with your families! We are so thankful this year, especially for Benjamin being off treatment and my Dad's good health since his surgery!! Thank you for your continued prayers!

Love, The Jones Family

Sunday, December 21, 2003 12:28 AM CST

Hi everybody!

Well, I'm not writing from our apartment because we're not there yet. Less then 24 from our closing on our house the buyers side hit a snag and our new closing date is Dec. 31st. We were really in a panic on Thurs. when we got the call from our agent because we didn't know where we stood at all - if the whole deal was falling through or if this was just a delay. We were also really worried because we thought our family (from 3 hours away) was already on the road to come down and help us with our move. Fortunately we were able to catch them before they left town, and Tim, Kim, Ashley and Papa decided to still come down to help us at least get everything set aside for storage over to the unit. That was a HUGE help and we really appreciate all their help - we would have never gotten the job done without them and our friend Tom from across the street!! Now what is left in the house is what is coming with us to the apartment, so at least we don't have to make a trip to storage when we move over New Year's. Benjamin, Zachary and Ashley had a great time playing together, and Ashley was a big help playing with Zachary while Benjamin was in school - that let us get a lot of work done!

At first it was really upsetting to have everything be put on hold at the last minute, but now I'm really glad that we will have one last Christmas in this house - it was
something we had been hoping for before we knew the house was sold. We havn't been able to decorate or anything for Christmas, so we're happy to be able to put the tree up and decorate it today. We're glad to have a little bit more time in the neighborhood, too, because we're really going to miss our neighbors. Everyone has been so sweet in offering to help us move or to help by watching the boys.

Benjamin is all through with school and he has a nice long Christmas break. We are all looking forward to sleeping in! He has been feeling much better and Zachary is over his chicken pox. He still has one little "boo-boo" that is right outside his nostril and he rubs at it constantly. Hopefully we can stay healthy for awhile and enjoy the holidays with everyone.

Emma is adjusting to her new home - truthfully, she is getting the royal treatment and I'm sure she has forgotten us - haha! Benjamin still feels sad from time to time over losing her, but he's anxious for his baby hamster to come home. His nurse practitioner, Suzanne, is helping us with the "adoption" process.

Other than that, not too much is new here with us. We're just kind of on stand-by for the time being. We're just thankful to be here in this house together and celebrating another Christmas. We visited Santa yesterday, and it was so wonderful to watch Benjamin light up as he got his turn to sit on Santa's lap. Last year we just couldn't take the chance of bringing him out to a mall to see Santa because of his counts. We did take him to an Adventures for Wish Kids party (last year) which was really nice - they do an incredible job of making things special for the children! I have to admit, though, that as nice as that event was, being in the position we were in the only thing I longed for was good health for Benjamin and returning to the "normal" rush and routine of the holidays. Going to see Santa at the mall, fighting the crowds to do Christmas shopping and enjoying the whole season is something I will never again take for granted. He had fun at the party last year, but he was just so tired and worn out and the expression on his face in his Christmas picture with Santa was not one of pure joy as it should be for every kid. It was also a sobering experience for us to see just how many sick children there really are out there - we had no idea before this happened. The kids were great, though, they were running around and enjoying every bit of it that they could. It is amazing how much difference a year can make! Last year at this time Benjamin was still very sick, had no hair, was sick several times a day, he wasn't able to eat a thing and was dependent on TPN feedings through his tubies, his life was so radically different!! This year he ran right up to Santa and had a nice little chat. Zachary wasn't interested in sitting on Santa's lap at all - he cried - but he did ask Santa for Elmo. We still have nagging fears from time to time, but we are so grateful to have Benjamin and to see how much progress he has made.

If I don't write again before Christmas, we hope you have a Merry Christmas and we thank you so much for your prayers and support for Benjamin!

Love, The Jones Family

Tuesday, December 16, 2003 4:22 PM CST

Hi everyone!

What a week we've been having around here! Benjamin is feeling better and has been back to school this week, so far, but Zachary and I havn't been so lucky. Zachary is getting over the chicken pox and I'm getting over the flu. We're very lucky that since Zachary had his chicken pox vaccine his case has been very mild. We had noticed a few little spots on his face on Thurs. and when I spoke with the doctor's office on Fri. about his allergy problems I asked about the spots. The nurse thought it sounded like a little virus, unrelated to the allergy, and we thought that made sense because when Benjamin had the flu he had a couple little spots on his face as well. Then over the weekend the number of spots went from 3 to about 14 on his face and they scabbed over just like chicken pox do. The spots were itchy, too, unless he had his Benedryl (for his allergy). I called back to the doctor's office this morning and asked about all the spots and described how they looked, and it sounds more like the chicken pox. Since it is such a mild case, though, he's really not having a bad time with it. He's not even itchy anymore, and his face is already starting to clear up. Brian stayed home today so I could get a little extra rest since we're getting so close to moving day - this Friday!!! Tonight is the best I've felt since Sat., but my throat and ears are still bothering me a little bit, and I even had a flu shot - I can't imagine how awful people with the flu must feel without having a flu shot. Oh well, we'll get over it. We just need to stay as healthy as possible going into this weekend so we can get moved in to the apartment and hopefully be healthy for the holidays.

Brian and Benjamin are going to an OSU men's basketball game tomorrow night courtesy of Make-a-Wish. They called on Thurs. last week and invited him to attend, so he's really looking forward to a boys night out with his Daddy.

Then on Thurs. Brian's Dad, Kim, Tim and Ashley are all coming down to help us move on Friday. We can't wait to see everybody and we really appreciate all their help!! The kids are all excited to play together - thank goodness we have a few more days for everyone to feel better! We'll just be moving right down the street to an apartment complex very close to Benjamin's school. We're not sure yet how long we will be there, but they did dig the basement of the new house yesterday - so at least things are underway!! We were told that it could be ready as early as April or as late as the beginning of July - we're pulling for April - haha!

On a bittersweet note, we think we may have found a home for Emma. A lady from Brian's office has had her for the last two days - she wanted to see if Emma and her own dog, Sam, could get along. She told Brian this morning that the two of them were up playing all night - Emma found a little friend!! We're so happy that she has a nice place to go, but it is strange not to have her around here. We really appreciate all the friends who have been really helping us by keeping an ear out for any friends who might be looking for a puppy. Some good friends we made through Benjamin's time at radiation at OSU - Danielle and Jim - have really gone above and beyond in helping us and we appreciate that so much! At first Benjamin seemed like he was having no problems with the idea of Emma leaving, then he did a 180 and was really upset. Now he's doing fine since he knows she is somewhere so nice and that she's happy and having fun. We also found out from his nurse practitioner, Suzanne, that he will be getting a baby hamster from her nephew. It is such a cute story because her nephew got a hamster, and unfortunately the hamster didn't make it, but his new hamster "Buddy" had nine babies a week or two ago! She checked to see if Benjamin could have one of the babies, and he is so thrilled he can hardly wait. The babies have to stay with their mom for about six weeks, so before too long his new baby hamster will be here - Patrick is the name he's thinking of now (from SpongeBob).

We're just about through with our Christmas shopping, but it has been really hard to get things done this year since one or more of us has been sick since Thanksgiving, and when we're well we're packing like maniacs. We only have two presents left to buy so we happy for that, and we're really looking forward to going to Ashtabula to relax and spend time with our families for Christmas. By that time the move will be over and we'll be able to just enjoy everyone's company.

Hopefully I will get to update maybe one more time before we move, but if not I will definitely update once we're in at our new place. Since we've lost some time this week with sickness I have a feeling the next few days we will just be throwing stuff in boxes and we'll just sort through it all later - haha! It is so hard to believe that these are our last days in this house! We'll really miss it here, but we're excited to see how the new adventure goes! Thanks for checking in and for keeping Benjamin in your prayers!

Love, The Jones Family

Thursday, December 11, 2003 6:57 PM CST

Hi everyone!

Hope you all had a good week! Things have been busy, but good around here. Benjamin has been back in school all week so far, and he seems to be getting closer to getting over his cold. Zachary is basically over his cold, but he's having some problems with allergies - unfortunately the allergy is to Emma!! We didn't really notice any problems at the end of the summer (when we got her) and during the fall because it was so warm that Emma spent alot of time outside (she loves it outside) and our house was open. Since the weather has been colder, though, and the house has been closed up we started noticing that he was sneezing an awful lot. He coughs about three or four times and then he sneezes a few times in a row now. He has several episodes of this a day, and if he gets anywhere near Emma his eyes turn red, start watering and get really itchy. He very rarely paid any attention to Emma so we didn't connect things until the last month or so. We've put a lot of feelers out there to find a good home for her, though, so we'll see what happens. Benjamin was really upset at first, but then we told him that as long as Zachary doesn't have a problem we would let him get a hamster. Hopefully he wouldn't have a problem - he's fine with cats and short hair dogs, it's the long hair dogs that he seems to be allergic to. The day after we told Benjamin he asked when Emma would be going to her new home and how soon he could get his hamster. We were pretty surprised by how quickly he adjusted, but I guess we shouldn't be too surprised because he really hasn't been able to have any contact with her either because we've had to start keeping her downstairs in the basement - she's got a great big kennel made for a huge dog and she runs around in a little pen that Brian set up. We also let her run around outside as much as the weather will permit it. But anyway, I guess since Benjamin hasn't been able to be around her he has started to get used to the idea. He's already picked out a name for his hamster. We had to laugh since he seems to have made his peace with the situation - haha!

Benjamin got a great treat last night - a night out with his Daddy to watch the Columbus Blue Jackets hockey team play. I got a call from the Children's Hospital Foundation yesterday afternoon and they had tickets that had been donated by one of the players - Tyler Wright (Benjamin got to have dinner and a limo ride with him several months ago while he was still in treatment - he had so much fun!) The lady asked if I thought Benjamin would be interested in a night out, and I told her that I was sure we wouldn't have to twist his arm to talk him into it!! Brian and Benjamin went to the game and had a great time! We thought for sure that Benjamin would poop out after the first or second quarter or that the noise would get to him after a while (that used to always happen), but he was still going strong after three quarters and Brian had to convince him that they really needed to go home and get to bed since it was a school night. We were so happy that he had no problem with the noise - he used to always plug his ears and cry that everything was too loud. Benjamin came home with a Tyler Wright hat and a shirt that he can't wait to wear to school tomorrow. We were so grateful to The Foundation for thinking of him because there were many occasions over the course of his year of treatment when he was offered tickets to hockey games and other events and the majority of the time we had to turn the tickets back in because he would get a fever and be admitted to the hospital. Either that or his counts were so low we just couldn't take a chance on letting him go to a big event like that. Last night he was feeling good and strong and could fully enjoy the whole night!

Speaking of Tyler Wright, Benjamin got an invitation in the mail ( all the kids who have been patients from the hem/onc clinic and J5 were invited) to a special holiday party at the hospital and members of the Blue Jackets will be there to celebrate with the kids and sign autographs. I would really love to take him, but I don't know if it will work out because the party is from 2:00 - 4:00pm and Benjamin's school doesn't let out until 3:45pm. I remember being up there last year during the party and he really didn't feel that great, but he was so impressed by the hockey players. He had been kind of dragging all day, but he perked up and ran around from player to player gathering autographs. It was a really neat party! I can't believe a whole year has gone by since then!! This holiday season is so happy and joyful compared to last year. I don't think any parent that has watched their child be so sick ever totally lets go of the fear that is the back of their minds, but I have to admit that the whole spirit around this house is so uplifted and we really feel like celebrating - so different from a year ago at this time. We havn't been to visit Santa yet (everyone has been sick) but maybe this weekend we'll get a visit - Benjamin has his list ready - haha!

Well, not much is planned for the weekend. Benjamin has swimming lessons on Sat. morning, and from then on it will probably be packing, packing and more packing. We put an embarassingly huge pile of boxes and junk out on the lawn for bulk pick-up on Tues. morning so that's some stuff we don't have to move. Brian is getting the truck from the storage place and hopefully we'll get a lot done. Hope you all have a great weekend and thanks again for keeping Benjamin in your prayers!

Love, Anne

Monday, December 8, 2003 10:57 AM CST

Hi everyone!

Thank you so much for checking back in on Benjamin - he is doing so much better! He went back to school today after missing three days last week. He wasn't a happy camper at all this morning when I hauled him out of bed, but he perked around before too long. His appetite is much better, he hasn't had any weird fevers for the last four days, and best of all - no headaches or eye pain!! Four nights in a row of uninterrupted sleep and no middle of the night pain made a huge difference for him. He is still awfully sniffly, but this time of year I guess that's to be expected. The baby is still sniffly as well, but he seems to be getting over his cold a lot easier than his big brother. Once or twice Zachary has coughed so hard he's gotten to the point where he actually did get sick, and that makes him extremely upset. He becomes hysterical if Benjamin throws up - I think it is from watching his brother be so sick before. Zachary was cute though because after he got sick he told me (through tears and gulping breaths) "I have a sickie!" After giving him a bath and scrubbing the carpet clean I guess Zachary decided that I didn't do a very thorough job because a little while later I caught him kneeling on the floor with his box of wipes opened next to him. He had pulled out every wipe and was scrubbing the carpet himself - haha! I asked him what he was up to and he said "I cleanin'!"

Well, Benjamin will have a few appointments coming up just to check on how the rest of his body is doing after treatment. He will be seeing an endocrinologist because we found out at his follow-up in Nov. that his thyroid is beginning to have some problems. This is nothing that we weren't expecting, and the remedy for it is simple : Benjamin will just take a pill to counteract the problem. He will take this pill every day for the rest of his life. We're so thankful that this is something that can be easily taken care of! He also has a follow-up with his opthamologist, and we should find out how he did on the eye tests he took a while back as a part of a clinical study looking at degeneration. The other appointment we're looking to get for him is with an ENT because of the huge build-up of hard, dry wax deep in his right ear that they were unable to irrigate in the ER the other night. We are really grateful to our friend Sherry (Ben Thomas' mom) who suggested this and gave us the name of her Ben's doctor. She told me that for some reason the irrigation isn't really painful for adults, but kids seem to have an awful time with it. However, Ben has had no problems with pain while getting his ears taken care of since seeing this doctor. I have a call in to this doctor and hopefully we'll get Benjamin worked into the schedule.

Plans are moving straight ahead - way too quickly (haha) - for our move. We will be out before Christmas - agghhh, this is a mad scramble to get everything ready to go, but we're really happy the house didn't just sit on the market. We've been packing like crazy and Brian has made lots of trips to the storage unit. He and a friend got alot of work done on Sat., and hopefully by this coming weekend we'll have the basement completely emptied out. The garage is taken care of as of this past weekend, so that just leaves the furniture that is still in the house. We're trying to get it to the point of just having the things we only need for day to day so there won't be too much to move come moving day. Tim, Kim, Ashley, and I believe Papa Jones are coming down to help us out which we REALLY appreciate!! We're just moving to an apartment down the street until the new house in done, so there won't be any disruptions in Benjamin's schooling. We finally have a "dig date" for the house, too - it is Dec. 16th - which is also our anniversary. We thought that was kind of neat! Things are pretty exciting and kind of scary to be making this move, but its nice to have chaos that is of our own making - haha!! We're really going to miss our neighbors over here, though. That is the worst part of this whole move, but so many neighbors we have talked to have said that sometime within the next year to couple years they are planning on making a move too.

Well, I guess that all the news here. Hope you're all off to a great week!!

Love, Anne

Thursday, December 4, 2003 4:12 PM CST

Hi everyone!

This family is definitely looking forward to the end of this week! Benjamin has had kind of a tough week since coming down with a cold last Thurs. Of the three of us with this cold, Benjamin has really had it the worst. He is still very sniffly and he has a cough. He's also been having strange fevers every few days or so that last for a couple hours and then are gone. Benjamin went back to school this week, but on Tues. afternoon I got another call that he had bumped his head on the playground. Unfortunately this time he hit the shunt, so we were ready to keep a closer eye on him. He was fine all afternoon and evening, and then at 4:30am Wed. morning he woke up crying in pain with a bad headache - on the shunt side of his head. We talked with the hem/onc doctor on call, and he called ahead to the ER and gave us the instructions to bring him in if he wasn't better in an hour. Thankfully, an hour later Benjamin's headache was gone, as was his fever, and he was back to sleep. This fever lasted about an hour - very strange - he's never been like that.

We kept him home from school on Wed. just to watch him and also he was very tired from losing so much sleep. He was back in rare form all day, feeling great, and no temp. Then he woke up last night at 11:30pm and was crying in pain again because his head hurt, his eye hurt (still on the shunt side of his head), and he was having trouble opening his right eye. The hem/onc doctor on call asked us to bring him in, which we were more than happy to do because by this time we were getting pretty worried. The doctor wanted Benjamin to have a CT scan and a shunt series - a series of x-rays starting at his head and extending down to his abdomen where the shunt empties out. Unfortunately the flu and horrible colds and upper respiratory problems are in full force here in Columbus, as in many other areas, and the ER was completely filled with sick little ones. We were very lucky that as a hem/onc patient Benjamin was taken back immediately and given a room in the ER rather than having to wait in the waiting room and exposing him to so much more. Because there were so many sick kids it was a really long night - he was discharged at 5:30am this morning.

On the good side, Benjamin's CT scan came back with clear results (even though he just had an MRI this is still a HUGE relief to us - things can change in an instant in this world), and his shunt series showed that the shunt is in good working order with no damage. On the bad side, we still don't know why he's having the up and down fevers, headaches, etc... We found out at Benjamin's last check-up that he has a huge build up of very hard wax in his right ear as a result of the radiation he had. They couldn't even see his eardrum! We had been putting drops in his ear at home, and we'd thought the problem was cleared up because he was hearing so much better. We were wrong, though, and he still had the huge build up. In the ER last night they put more drops in his ears and then irrigated his ears which was horribly painful for him because of all the pressure that has built up. He screamed and screamed until they finished. Even with all that, they still couldn't work much out of his ear. They didn't think it was infected though because he hasn't had any ear pain. We asked about the possibility of a sinus infection, but when they did the CT scan there was no fluid build up in his sinuses. We're guessing that this must be the flu, and it is just miserable for him. I have to say, though, that it is a relief to have good results on the CT scan and the shunt series and for this to seem to be a "typical" run-of-the-mill illness. We may be in the hem/onc clinic tomorrow if he's still having fevers and headaches. While it is always nice to see everybody up there, I'm really hoping not to have to take Benjamin and Zachary out - Zachary is still getting over his cold, and they are both exhausted from our all-nighter last night.

Benjamin is definitely not going to school tomorrow, and we've made some arrangements with his school for whenever he does go back. He seems to be really tired out by the third recess of the day (that's right, he gets THREE recesses!! I've told him how lucky he is because we only had two recesses - haha!) It is during the third recess that he seems to keep having the head injuries, which makes sense because he is less steady when he is tired. So for a while we're going to have him be outside for the first two recesses and indoors for the third one. His teacher and the school were really understanding about the whole situation and very willing to help us out. We were afraid that this might disappoint Benjamin, but as it turns out he is more than happy to stay inside during the third recess. He's just too tired.

Brian and I are pretty wiped out from the lack of sleep the past few days, and we've had to hit his saved up time off which we have to watch because Christmas is coming and so is our move, but oh well, you've gotta do what you've gotta do. Zachary is getting over his cold much faster than his big brother is. His nose is still a little bit sniffly, and today he received his flu shot. I wish I had known earlier that kids his age could get the flu shot, but they told me that it will still give him some immunity. Zachary was not pleased at all about getting a shot though. He was excited to get his shoes and go "bye-bye" with Mommy, but he figured things out pretty quickly when he saw where we went. I had to lay him on the examination table in the doctor's office for his shot and he was holding on to me for dear life saying "baby, no, noo!! baby no" which must mean this baby wasn't interested in any shots. On the ride home he told me "baby hurt!" Poor little guy, but at least that's all taken care of. I really should get him up now or we'll never get him back down to sleep tonight.

As always, thank you so much for looking in on our guy! We hope you all can avoid this flu-bug, especially all the little ones still in treatment!!! I remember how scared and super protective we were of Benjamin last year during flu season. It is really horrible when you see people getting so sick with the flu and knowing you're child has very little immunity to fight anything off.

Love, The Jones Family

Monday, December 1, 2003 10:23 AM CST

Hi everyone!

We hope you all had a wonderful Thanksgiving! We had many things to be thankful for this year, especially my Dad's recovery from his open heart surgery, our boys, and our family and friends who have been so supportive and loving!
It was so great to celebrate and be happy!

We were beginning to wonder if we would make it to Ashtabula to celebrate with everyone, though. We had planned to leave after school and work on Wed., but I received my weekly call from Benjamin's school telling me that he was in the nurse's office after hitting his head. Usually Benjamin gets on the phone and cheerfully tells me that he's fine and is ready to go back to class. This time he was very quiet, and he asked if he could come home. I told him to try going back to class and see how he feels. I could be over to get him in three minutes if he needed me. Then the nurse got back on the phone and said that he seemed a little disoriented (he was just kind of staring), and she put the cafeteria aide on the phone who told me that she had seen him almost fall out of his seat at lunch -he just seemed to lose his balance while he was seated. Things sounded a little strange so I called Benjamin's nurse, Suzanne, to check since we were planning to head out of town, and problems always seem to pop up either going into a weekend, after hours at the clinic, or when you're out of town and away from your own doctor. Suzanne asked me to call the school back to see how he was doing since he'd gone back to class, and when I did the school said that he had perked around and was doing just fine. When I called Suzanne back she said that things were probably fine and we could bring him in on Mon. if he wasn't back to his little old self. Benjamin came home from school and was fine all evening, but he was up and down all night coughing and hacking, and he woke up with a full-blown cold. We felt bad that he was sick, but we felt so much better having an explanation now for why he was quiet and not quite himself at school the day before. We slept in and then tried to head up to Ashtabula, but after being in the car for two hours and only making it 30 miles from home we turned around and went back home. I don't know if there was an accident on the highway or what, but we were only going between 20 - 30 MPH or we were at a standstill, so we tried getting off the highway onto one of the back roads to make an end-run around whatever the hold-up was, but unfortunately everyone had the same idea and we ended up going 10MPH through all the little towns along that route. We finally gave up and went back home for our own little Thanksgiving dinner that Brian put together in a hurry - he did a wonderful job!! That night at around 6:45pm we decided to try it again, and we made it up to Ashtabula very easily - no traffic at all. Unfortunately we had missed Brian's Mom's family dinner on Thurs., but at least we were able to get there to visit everyone, and we had dinner with my family on Friday. My sister and her boyfriend Greg made it in on Sat. and all the rest of our families live in Ashtabula so we were able to visit with everybody. It was so great to see everybody and for the kids to all play. I'm afraid that my little niece, Ashley will probably end up with a cold at any minute, though, because Zachary and I ended up catching Benjamin's cold and our little nephew Ashton also was getting over a little cold. My Mom was also feeling like she might be coming down with one,too - we're sorry everybody!! The kids had a ball together anyway, though.

On Sat. night we went to the Festival of Trees with my family. It is a fundraiser for the high school we all went to and the school where my Mom taught for years before retiring at the end of last school year. We have been going to the event for several years, and it is always so much fun to see people we havn't seen in ages and to watch the fun of everyone bidding on beautifully decorated trees. Last year we didn't make it because Benjamin was still on chemo, but it was great to get back to it this year. Brian and I visited with friends from school and I got to see my friend Becky and catch up. It was so nice to spend time with family and friends and enjoy a holiday party!! Santa was also there, and Zachary was fascinated by him. We did alot of walking while we were there - Zachary had ants in his pants and kept saying "I walk." We'd follow behind Santa and Zachary kept saying in the most solemn voice "Hi Santa!" He was pretty awestruck!

We came home yesterday afternoon and got settled back in, ready to jump into another week. Benjamin went to school this morning, but I cancelled his PT for today because he was up and down a lot last night. He was very sniffly and I know he didn't get a restful night because I could hear him tossing and turning and moaning and groaning. Zachary is very sniffly as well, and I'm more stuffy than anything else. We're quite a group here - I don't know how Brian has managed to avoid it so far.

We found out a week ago today that someone had made an offer on our house, so we decided to accept the offer, and as long as everything keeps moving along we should be closing on this house Dec. 19th and will have 72 hours afterwards to move out. We had never expected things to move along this quickly - the house was on the market for 6 days - so now we're really scrambling to be ready to be out before Christmas. We were a little bummed that we wouldn't have one more Christmas in this house, but we're grateful that someone bought it and we know we can't be all choosy about the whole thing - haha! We've got an apartment that we'll be moving into in 2 and half weeks, and we'll probably be there for 6+ months as they havn't broken ground on the new house yet. Fortunately the new apartment is just down the road, about 1 minute from Benjamin's school, so that won't disrupt anything for his schooling. We'll keep you posted on the frenzy to pack up and be out of here!

That's really about all that's going on around here - I guess that's plenty, though - haha! We're just really looking forward to Christmas and having things settle down a bit. The boys are getting very excited as well! Zachary doesn't really understand everything, but he knows who Santa is now after Sat. night. I can't believe that a year ago we were still right in the middle of the whole treatment and our little guy was so pale and sick and didn't have any hair. I still remember taking him to the toy store Zainy Brainy and watching him walk up and down the aisles looking at the toys. Benjamin wore a Santa hat during the Christmas season rather than a baseball cap, and he had his little hat on with a jingle bell necklace around his neck. Christmas carols were playing over the speakers and Benjamin was walking all over the store singing "Have a Holly Jolly Christmas" which is his favorite Christmas carol. I wanted to cry because Christmas seemed so bittersweet, but Benjamin was just out there doing his own little thing and enjoying the whole holiday experience no matter what. I found the little Santa hat while packing some things up just a few days ago, and it really brought back a flood of memories. I showed him the hat, but he wasn't really interested in wearing it. I can't say as I blame him - he very rarely wears hats anymore. I love to see that head full of black hair anyway!! We are so looking forward to Christmas with our family this year and no "bitter", just "sweet!"

Thanks again for all of the great messages sent to Benjamin - he gets such a kick out of it! We really appreciate that you continue to check in on him and send him your love!

Love, The Jones family

Monday, November 24, 2003 11:33 AM CST

Hi everyone!

Just wanted to update one more time before Thanksgiving!! Not too much is new here. Benjamin is home sick from school today, but he's feeling much better. He has had a sore throat for the past two days, but he doesn't have a fever today. Yesterday he only had a temp for a few hours and that was it - it was very strange. He said that there has been alot of strep going around at school, so right now that is his big fear. I can't believe that someone who has been through so much misery from chemo and radiation would have more fear of the little stick they put in your throat to test for strep. It is amazing what the mind will allow you to forget with time. Every time he has a sore throat he freaks out and right away starts asking if I think it's strep. He's just spending the day resting and enjoying his Get Better Bear pops for his throat.

Benjamin had a good time at his skating party for Cub Scouts, but his legs were so sore yesterday! He could barely walk! Neither he or Brian are skaters so it was a little bit rough for both of them. Brian said that it took them 20 minutes to make one lap around the rink, and they called it quits after that. Benjamin did have fun with his little buddies, though, and that's all any of us cared about. He also earned his skating badge - that's pretty cool, I didn't know they had skating badges!! After the sore muscles yesterday, though, he has no interest in going back - haha! He also had swimming lessons that morning so he really did alot of exercising that day. He was very proud of himself because he jumped in at the deep end, and he wasn't wearing a floatie!! His teacher was right there to catch him.

This week Benjamin has a Tiger Cubs meeting and his reading class is having a little open house. Benjamin has an extra reading class with a reading teacher and it is really paying off. We are seeing a tremendous difference in his reading abililites. It is still a struggle for him, but he has come such a long way since the beginning of the schoolyear. He has three of four books to read every night for homework from his extra reading class and he has two or three books for homework every night in his regular classroom reading group, so he's doing alot of reading each night. He was reading level three books just two weeks ago, and for the last week or so he has been bringing home level 7 and 8 books and doing very well with them. (The school wants the kids to be at level 16 by the end of the school year). I have to help him with a word occasionally, but overall he's doing it on his own.

Zachary is talking more and more every day. It is so much fun to watch! He has a lot little phrases and sentences that he says all the time now, and he knows he can make us laugh. His personality is very similar to Benjamin's and Brian's in that he loves to be a little jokester and to entertain. He's working on some more molars, but he hasn't been too fussy. Actually he's calling me right now because he wants to take a little nap, so I'll have to cut this short.

We hope you all have a Happy Thanksgiving with your families and friends!! I'll update more after the holiday. Thank you for continuing to check on Benjamin and support him!

Love, Anne

Thursday, November 20, 2003 11:10 AM CST

Hi everyone!

I'm sorry it has been a little while since I've updated - we took the computer down for a few days to show the house and I got things put back together this morning. Thank you so much for all of the e-mails and guestbook messages! We love to hear from you!

Not too much has been happening around here - other than trying to keep this house picked up and ready for showings. It is an unnaturally clean environment that this family is definitely not used to - haha!! With Benjamin being off at school during the day his toys stay in their place, but Zachary loves to un-do all of my work. If I fold a blanket, he pulls it back out. If I put toys in the toybox, he hauls everything back out again. I gave the boys each a Rubbermaid tub to keep their favorite toys in, and it is so much easier now. I can just throw everything back in the tubs and put the tubs in the garage as we walk out the door.

Benjamin had his follow-up check-up from radiation at The James Cancer Hospital at OSU on Tues. and everything went very well. It was so great to see all the people who took such great care of him last year. Our neighbor Danielle works there, and she and Charlotte (Benjamin's nurse who he just loves!) were all ready for him. I had told Danielle that Benjamin wanted to wear his costume from Halloween when he comes in for his visit, but unfortunately I must have packed it because I couldn't find it anywhere. Danielle and Charlotte had treats for him, too. He spent alot of time catching up with them and many of the other nurses and radiation technicians who cared for him. Everybody couldn't get over how different he looks now with his hair back and just an overall "healthy" look about him. People were surprised at how Zachary has grown as well. He was just a little peanut when Benjamin had his radiation treatment - just a couple months old. Benjamin saw Dr. Bauer and Dr. Abdu for his check-up and they were happy with how he is doing. Some of the side effects he is experiencing - the occasional short-term memory problems, the elevated thyroid levels, and the thinned hair at the point of entry for the radiation - are all "normal," and nothing we weren't warned of in advance. It was nice to meet Dr. Abdu on this visit because his wife, Tamatha, was one of Benjamin's nurses many, many times at Children's and we all really liked her. He is scheduled to come back again this spring for his next follow -up - May 18th, which will be two days after the two year "anniversary" of his diagnosis.

Benjamin seems to be doing better with his reading. When he received his report card he had tested at a level 3, and this week he has been bringing home books that are levels 7 and 8. He needs help with a word here and there, but for the most part he is reading on his own. He was also so proud to bring home two math papers yesterday - one had an "O" grade and the other had an "S" grade. He is kind of hit or miss with the math, especially if it is a paper where they have to go back and forth between adding and subtracting. If it is all adding or all subtracting he gets on a roll and seems to stay on track better. I don't know if I updated last week about his report card, but he did really well on it. His teacher had told us that she would have to give him "N's" (for needs improvement) in a couple of areas, and we were completely expecting that. We knew reading would be one of the areas (and it was) and writing was the other area. I believe this was for the writing they do on their own - like sentence writing in their journals, because for handwriting legibility he received an "S" which is such an improvement for him! As a matter of fact, the those were the only "N's" he received - we had actually expected more than just two. All the rest of his grades were "S's", and in many areas on his grade card an "S" was the highest grade you could earn! We were so pleasantly surprised by this!! School is a lot of work for him, but he is holding his own! We havn't heard any word yet on when his LD testing will begin, but we do know that it must be completed by January, so I imagine it will be starting pretty soon. Dr. Bauer (his radiation doctor) thought his difficulties sounded like dyslexia, but we will have to wait for a definitive diagnosis.

Tonight Benjamin has OT and then after dinner he is off to a Tiger Cub meeting. He is really looking forward to this weekend because the Cub Scouts are having a skating party. After both of Benjamin's surgeries we asked if we were going to need to place any restrictions on him as far as sports were concerned, and the doctor told us that he can live his life like any other little boy (aside from no contact sports), and for any activities that you would normally wear a helmut - like rollerblading and biking - he must wear a helmut. I don't think most kids wear a helmut roller skating at a rink ( at least they didn't WAY back when I was in school and went to skating parties), but Benjamin really has to. I wasn't sure how he would feel about this, but he said he knew he would have to wear a helmut and that he doesn't really care. I hope everything goes well and that nobody teases him ( that's the mommy coming out in me) but he's never let something like that stop him from doing the things he wants to do so far, so I hope he has a ball on Sat.!! He also has swimming lessons that morning so I think it is safe to say that Benjamin should sleep well on Sat. night - haha!

Since the incident of the older child bothering him on the playground last week he hasn't had any further problems. Hopefully this will continue!! He did come home one afternoon last week and say he had been punched in the stomach. I had myself all geared up to deal with another situation until he said it was by accident when he and his little buddies were doing karate on the playground - haha!! That was a relief, but we did have a talk about how karate moves should not be practiced on the playground at any time.

Zachary is learning more and more words all the time - and not all of them are good - haha! Daddy accidently let the "D" word slip out last week and Zachary took great delight in saying that word over and over. I know he has no idea what it means, but he seemed to really enjoy the shock value it got out of his big brother! He didn't say it again for a few days so we thought he might have forgotten it, but sure enough, he brings it back out again every now and then - and he even uses it in the right context!! Last night when we got home after having to be out of the house for an hour for a showing I told him "Uh-oh, I think your pants are wet." He responded by looking down at the wet pants and saying "d---!" We're really hoping he doesn't haul that word out over Thanksgiving dinner, but who knows what goes on in the minds of little ones!!

That's about all that is new around here. Thank you so much for looking in on Benjamin! If you could, please say a prayer for the kids still in treatment and those who are all finished - we have met so many through the internet and other web pages. Thank you for praying for Benjamin as well!

Love, Anne

Thursday, November 13, 2003 11:52 AM CST

Hi everyone!

Hope your week is going well! We've had a busy but happy week here. We've been doing a lot of packing and cleaning, but there seems to be a light at the end of the tunnel, or should I say we're getting to the bottom of the mess we call our home - haha! Benjamin has been a big help to us! He's on "Zachie-duty" while we work.

I spoke with Benjamin's teacher yesterday and she gave me a head's up that report cards will be sent home on Friday afternoon. She explained that she had to give Benjamin a few "N's" (for Needs improvement) in a few areas, and I told her that we had expected that. However, she said that she is attaching a note explaining the situation and telling about what a hard worker Benjamin is and how pleased she is with his attitude and performance at school. She said that a lot of the kids get upset at the sight of an "N" on their report card, and she sensed that Benjamin might feel that way. She hoped that the attached letter would soften things for him. Tonight we're going to have a little talk about the whole thing with him just in case he opens his report card before coming home tomorrow. We're really not worried about the grades because we know how hard he's trying and we know that his testing for LD hasn't been done yet. I really believe that when the results are in and we know how to adapt his learning in order to best help him we will see a big improvement.

In a related topic - Benjamin got his first test from CCD (his religious education class) back on Tues. night, and I really think it is proof that Benjamin will make great strides after his LD testing is completed. Benjamin missed his class the week before the test because of his bad cough, so he wasn't there to go over the material, and we had no idea that he would be taking a test when he came back the next week. The day before the test I went over the chapter he had missed and the chapter for the coming week. We also looked over the chapter reviews - but only one time. When I brought him to class the teacher's aide asked me if I thought Benjamin would be ready for the test that night. I told her that I thought he might be ready, but I asked if it would be possible for someone to read the test to him because of the whole story about his testing at school to evaluate him. The teacher and aide were so understanding and very willing to work with him in this way. It was a three page test (there was a lot more to it than I thought there would be!)with matching questions, short answer questions and fill in the blank questions, and Benjamin got 100 Just having the test read to him and allowing him to answer some of the test orally made a tremendous difference. We were so encouraged by this and it was a huge boost to Benjamin's self-esteem!! A trip out for ice cream was definitely in order!! To us, this just reinforces our belief that the knowledge is in his mind, he just is having trouble getting that info back out. It is like the connection from thinking about the correct answer and then writing it out gets mixed up. And I do have to be honest in that while Brian and I both grew up Catholic, Benjamin's routine of weekly Mass attendence has been pretty spotty to say the least. That is our fault, not his, and so it isn't like he is being fully immersed in religious talk all the time. He learned the info at CCD and through our work at home and he remembered it. We were so happy about this and realized just think of what he will be able to do in school if he can get the extra services and attention that comes with having a definite diagnosis of a learning disability. This will open up so much for him!

While this was such good news, we did have some disappointing news from his school yesterday. While Benjamin's class has been very accepting of him and he has made some really great little buddies, a couple of second graders have been giving Benjamin a little bit of a hard time. Last week one boy called him "scarhead" and yesterday another second grader went up to him on the playground, grabbed him by his wrist, and twisted his arm until he knocked Benjamin to the ground. Benjamin said that he and his little friends weren't even playing with the boy, he doesn't know him, and the child just walked up to him and did this. I don't know if the older boys are just curious about Benjamin - his scar is quite noticable on the back of his head since the hair doesn't cover it. Someone told me that they may be testing him to see how tough he is because they can tell that he's been through something, but they don't know exactly what. I don't know if we should have someone come in and explain Benjamin's situation to the older kids or if that is just drawing more attention to it all. Maybe these two boys just need to have it explained to them - I don't know what to think. I spoke with Benjamin's teacher about it, and she is going to make the playground monitors aware of the situation so they can keep an eye on things. I just hate that this is happening, but so far it has been pretty minor, and like I said the kids in has class (who are the kids he has the most contact with) have been great. Kids are kids, though, and everyone gets picked on at some point. I just worry about him being knocked to the ground because he does have the shunt in his head, and his bones are a little more brittle due to the chemo. Benjamin's attitude has been really positive and he's not letting this stop him from enjoying school and his friends. We'll just keep an eye on the situation and I know that the school is doing the same.

Other than that, not alot is going on around here. Zachary is adjusting to his room and is sleeping pretty well in there now. I'm still on the air mattress on the floor in his room, but I don't think I'll have to be in there much longer. He settles down in his little bed really well and he's happy in there, so we may actually be making progress. Last night was extremely windy here and he didn't like the sounds from that at all. He kept saying "outside scarey!!" I just love when little kids are learning to talk! The stuff he comes up with is so funny.

We hope you all have a great weekend! Thank you for checking in on Benjamin and for continuing to keep him in your prayers!

Love, Anne

Monday, November 10, 2003 9:51 AM CST

Hi everyone!

Please remember Christi Thomas and her family in your prayers (see link below). She is a very brave little girl, and she just recently began a new phase of treatment in Philadelphia.

We just wanted to thank everyone who has been stopping by to check on Benjamin and for all of the very kind e-mails and guestbook messages. It means so much to us that you all are thinking of him!! He was so excited to receive so many messages and e-mails! I wish you could see the smile on his face every time he hears a new one.

We hope you had a great weekend! Things were happy and crazy around here. On Friday night we watched the movie "Finding Nemo" together, and it was so cute. We missed it when it was out at the theaters, so we've been anxiously awaiting the video. It was worth the wait - Benjamin loved it! It was so nice to snuggle up with him on the couch and watch a movie together. Benjamin sometimes comes up with things that really catch me off guard. I don't know if you have seen the movie, but there is a little fish in the movie named Dory, and she has short-term memory problems. Dory says or does something and then a minute later it's like it never happened. Benjamin got such a kick out of her, and at the end of the movie he said "I'm just like Dory because I get confused!" He didn't say it in a sad way or a "feel sorry for me" way at all. He seemed happy that he's not the only one who forgets things. He was happy because Dory worked really hard to focus and remember things and with Marlin's help (another fish - Nemo's dad) she could remember better. I think he liked Dory better than any other character in the movie. I'm so glad we finally got to see it.

We also spent a great deal of the weekend packing. Call us crazy, but if our house sells we're going to be moving. We're not going far, and we're going to be living in "our house" again. We're only going across town, and we're building our same model house again. A few things in the house will be a little bit different, but basically we should feel right at home - haha! Are we creatures of habit or what?! Benjamin is getting really excited about the move. At first he didn't like the idea at all, but now that he has seen where we would live and seen that there is a community pool around the corner he's all for it - haha! He will be in the same school district, unfortunately a different elementary school next year though. The good news is that after fourth grade he will be back with all of the same kids again at the middle school. His elementary school right now shuffles every class every year anyway, so he would not be with the same class again next year (I believe there are 5 or 6 first grades at his school). So anyway, this weekend meant ALOT of cleaning and packing to get the house presentable to our realtor tomorrow. We let a lot of things slide or pile up over the past 18 months so we had quite a bit of de-cluttering to do. Benjamin was such a big helper for us by watching his brother while we worked. We'll keep you posted on how the house-selling goes, but at least if it doesn't sell we'll be living in a house we still love. While there are a lot of horrible memories from the past year and half, there are so many more really wonderful and happy ones here. We moved here when Benjamin was two years old and we had a lot of fun here. This was Zachary's first home too. For a long time I could only see the bad memories here, but now when we look back at pictures, the good times that happened before Benjamin was diagnosed don't feel imaginary anymore. I don't know if that makes sense. Looking back at pictures of us from before didn't feel like it was really us, I guess because we were living in what was happening right now, and "right now" was so hard. We'd look at pictures of Benjamin and say "how big do you think the tumor was then?" because we knew the seeds of this illness were there since before he was even born. The old pictures made me cry because they didn't feel real. They're starting to feel real again, and they make us smile and laugh while we remember. I'm so grateful to have had all those years before he ever got sick to just enjoy him as a baby, a toddler, and as a little boy. We just had that interruption for a year, and now we have happy pictures again. It is hard to learn to live in the here and now, but everyone adapts!

Well, now that I've rambled way off the subject, I should run. Zachary, or Zaffy as he now refers to himself, is hungry, and Emma has wrapped herself around her stake in the ground. I don't know how she manages to get herself all tied up so quickly, but she's at it again - haha!

Thank you again for all of the sweet notes! I really appreciated all of the notes from other moms out there whose children are also either still in treatment or are in the "watch and scan" mode like us. It really meant alot to feel that support, too! Their families have come to be friends that we care very much about. We check in on their children as well- hoping for all good things for them, and they are always in our prayers, too. These children are so amazing in what they have been through, and many continue to go through, and what great attitudes they put forth. Please pray for them, too.

Love, Anne

Friday, November 7, 2003 2:49 PM CST

Hi Everyone!

Thank you so much to everyone for all of your prayers and messages of support for Benjamin! We just got home from the hospital a little bit ago and we have GREAT news to report - clean scans!! Benjamin is perking around here now - he had just a tiny amount of sedation, but it really kicked in and knocked him out. He's a little unsteady on his feet, but that should wear off in the next few hours.

Benjamin did just great for his scans today. As always he was worried about the needle stick to start his IV (for the sedation), but when he was reminded about this great spray they now have that numbs the area he calmed down. We had his clinic appointment first and it was so nice to see everyone back at the Hem/Onc clinic. Everyone came over to talk with him and made a fuss over how great he looks and how much hair he has now. They all said "who is that guy with all the hair?!" He got a kick out of telling everyone "it's me - Benjamin!" He had his check-up with Suzanne (his nurse practitioner) and with Dr. Olshefski, and they both were so pleased with how well he's feeling, looking, and doing. His weight is holding steady, and for the time being we're going to keep him on his morning Nexium pill (for reflux). We've tried to wean him off that pill a few times now, and every time he does fine on mornings one and two, but by mornings three and four he's back to getting sick after eating. That's ok - we can deal with that. He's officially off his antibiotic now - yea!! He's been on that, weekends only, for the last 18 months. We don't have the results from his blood counts back yet, but Suzanne and I definitely agreed that those weren't the most important results of the day - haha! Just getting those scans back was our main concern.

After his check-up we reported to MRI, and unfortunately they were a little backed up this afternoon so we weren't able to get in right away, but that was no problem. They were having some troubles with a tiny newborn baby who was also having an MRI. This little baby woke up in the middle of the MRI, and they were having a hard time getting the baby back to sleep. The boys got a kick out of hearing those tiny, newborn cries and watching the nurses carry the little one around to try to settle him. Benjamin's nurse was so good about making sure to get his IV started right away because she understood that he just wanted to get it over with. Unfortunately for Benjamin, his vein rolled after the needle was in, and his nurse and another nurse were unable to get it back. The vein in his hand cooperated, though, and he was so relieved to have that part over with. Bless him, that that should be the part that is the biggest worry for him. As far as he's concerned once that is over with, there is nothing left to fear. Our fears are hitting overdrive by this time, but he's still blissfully unaware.

Benjamin only needed a tiny amount of sedation, and he also had a CD to listen to as the scan was going on. He was so out of it though he doesn't even remember hearing any music. He asked me to stay in the room with him during the MRI this time (he's always asked us to go and to let him do it on his own), but he doesn't remember me being in there either. Because he didn't have much "sleepy medicine" he perked around very quickly and we headed back up to the clinic to wait for the results. Thank God we are able to leave that hospital knowing the results. I really feel for the families that have to wait a day or more to know their answers.

Suzanne came out from the back with a big grin on her face and said "everything is good!" Those are the words we were praying for!!! I can't even describe the feelings of relief. They also checked the shunt, and that looks good as well. I was relieved to hear that, too, after the many bonks to the head he has had since starting school. I receive a call just about every week from the school nurse because he's hit his head somehow. At least it hasn't been because of his own balance issues. It has been because someone crashed into him or he stood up in the play tunnel and cracked him head. She suggested I call Benjamin's neurosurgeon, though, to see if he wants to do any follow-ups with Benjamin.

Now we're back at home and getting ready to have something to eat. Poor Benjamin couldn't eat or drink anything this morning because of the sedation. He would be allowed to if was willing to forego the "sleepy-medicine," but that is still a non-negotiable at this point - haha! Why not, if it helps him get through all of this, that's fine with me. If it were available to Brian and me I think we'd take them up on it as well - haha! I don't think either one of us would need any sleepy medicine tonight, though, we always sleep so well that night after scans!!

Thank you so much for checking in on Benjamin and for saying all those prayers for him. Brian and I really appreciate the support and caring from all of you!

Love, Anne

Monday, November 3, 2003 10:12 AM CST

Hi everyone!

We hope you had a great weekend! Benjamin finished up a good week at school and was ready for fun last weekend. The only bad thing that happened was that he was called a name by another older boy at school. Apparently while playing on the playground one of the older kids called Benjamin "scarhead." Benjamin handled it like a trooper, though. He told the boy "hey, I have a name!" I don't think it bothered him tremendously because he didn't even tell me about it until just before bedtime on Friday night- he said that he had forgotten about it until then. I told him that I thought he handled it really well - usually when someone says something mean it catches people by surprise and they don't know what to say, but I told him that I was really proud of him for handling it like a big boy. We had talked about something like this happening before and I had said that most people whether they knew him or not would be very nice to him and only be curious about why he had a scar on the back of his head. That has really been the case, too, so far this year. He has made some very good little buddies that don't care one bit about whether Benjamin has a scar or not. The kids know he is "just Benjamin." I had told him that anyone that is mean to him or teases him about his scar is just the type of person that would tease one kid for being too fat, another kid for being too skinny, another kid for having a big nose, etc... and that's the kind of kid that isn't a friend anyway. He seemed to accept this idea in theory, but I didn't know how it would be in practice. I know that it did hurt his feelings at the time, but he isn't too fazed by it. We talked about how this boy probably is afraid that other kidslike him unless he can make someone else look bad, and I told Benjamin that I feel sorry for that boy because he doesn't know what a great little kid Benjamin is and he's the one missing out. Oh well - this kind of thing happens to every single kid at some point in their life whether they have had to fight cancer or not. Kids picking on other kids is a fact of life, and we can't really shield him from that anymore than any other parent can. I'm just glad that Benjamin's self-esteem is high enough to take it.

Benjamin was looking forward to the weekend because I told him that he could "camp out" in Zachary's room with us while I'm trying to get Zachary adjusted to sleeping in his own room. Zachary spent most of the night in his toddler bed and Benjamin and I had the air mattress. Half-way through the night Zachary woke up, though, and wasn't interested in being in his bed anymore and the three of us were on the air mattress for the rest of the night. It was so sweet! Then Zachary was the first one up, of course, and he tried to get the rest of us up by "cooking" things for us in his play kitchen set. He kept bringing play food over to us and trying to make us join in. He is so funny because he walks around his room saying "I cookin'!" Poor Benjamin was still tired though and his response, over and over, was "I'm not hungry Zachie!"

Benjamin was able to get back to his swimming lessons on Sat. morning (last weekend he was sick - bad cough), and he did alot of work. He "swam" from one of the pool to the other and back again, holding onto the noodle-floatie for dear life. He's so much fun to watch! Brian is going to try to start taking him over to the pool during the week as well to give him a little more practice.

On Sunday Benjamin did some work outside as credit for his Tiger Cub badge. We had played outside on Friday afternoon and he had done quite a bit of raking, but the wind kind of blew the leaves around and some more leaves fell over the weekend, so he did some yard work with his Daddy yesterday. He's really getting into this Tiger Cubs (Cub Scouts) thing! We tried to get some pictures of him in his uniform last night, but he did really cheesy smiles in all of his pictures so we might try again tonight. I'm so glad he's enjoying it so much and the other boys in his den are really nice boys who treat him just like one of the guys.

Benjamin also bought a guitar yesterday afternoon - there is a new picture of him posted if you'd like to check it out. He has been wanting one forever, and I'm not really sure what sparked his interest. He had planned on ordering one (with some help from his Daddy) from the Lillian Vernon Kids catalog, but we found one at Toys R Us for less than half that price. He learned the G chord yesterday, and was thrilled to learn the song "Are You Sleeping?" He was so funny because he practiced it and practiced it and gave us several concerts last night. The whole song is all G chords, but to him it a very big thing. He wanted to bring his guitar in for show-and-tell today, but I was able to convince him that it might be tough to carry all of his things in plus a guitar.

We also made a trip to the Library yesterday to turn in Benjamin's reading minutes for the Patches for Progress program that the library and the school is running. He is supposed to read for 300 minutes each month, and if he completes those minutes he receives a patch for each month to sew on his bag. Even though reading is a struggle for him, Benjamin has worked so hard at it and he had an extra 205 minutes that carried over and are added to his month for November! This program has been a great motivator for him, and his teacher has asked him to bring in his patches for show-and-tell. As a side note about his reading, he is so happy that he has moved up to the next level in his reading books at school. The school would like for the first graders to come in at the beginning of the school year at level three, and he came in at level two. He has been working so hard and this weekend he brought home level four books, and he is doing very well with them. Slowly but surely, he is trying to catch up. He is getting extra help from a reading teacher at school and we're working with him every night. The Patches program is encouraging him to read even more. It is hard to watch him struggle with words he could read easily two years ago, but it is not surprising given everything his brain and his body have been through. He's getting there, though!!

Last night we had a night out for pizza with some good friends of ours and Benjamin had lots of fun with the kids! It was so nice to just go out to dinner and enjoy ourselves. Benjamin did have a minute where he thought he was going to get sick, but it passed very quickly. We had taken him off his Nexium pill again, thinking he might be ready to be weaned off from it, but I don't think he's ready yet. We had tried it before and he was fine for the first two days, but then on morning three he got sick. The same thing happened this past weekend when we tried it again, so maybe its just too soon. That's ok, though, we break the pill open and he gets it all down in one bite of yogurt every morning.

The big news is that last weekend was supposed to be Benjamin's last weekend on his Sat. and Sun. doses of antibiotics! The doctor wanted him to stay on in for the six months following the completion of treatment until his immune system was back up and fully functioning. We will find out for sure about it this Friday when we go back in for Benjamin's next check-up and next MRI. We're looking forward to the physical and seeing everyone we havn't seen in so long, but the MRI - Ugh!!! The stress of waiting to know if the rug is going to be ripped out from under us again is overwhelming at times. Every family goes through it at test time, though. Thank God it is not a worry for Benjamin - at least that little piece of innocence has been preserved for the time being. His MRI is scheduled to begin at 1:00pm, and at least we are very lucky not to have to wait out the weekend for results. So many families have to wait overnight or longer for results, which has to be a real added torture to the whole process. We are so thankful that because his only test is an MRI we are able to find out the results that afternoon. We know we are going to walk out of the hospital with answers. Please say some extra prayers for Benjamin this week - please pray for clean scans!!! I probably won't update again until Friday afternoon unless he has something fun and exciting going on this week. Thank you for thinking of him during a very stressful week!

Love, Anne

Friday, October 31, 2003 10:31 AM CST

Hi everyone!

Happy Halloween!! What a wonderful difference between last year's Halloween and this year's holiday! Last year at this time Benjamin was hospitalized with some serious problems with his liver due to toxicity from the high-dose chemo he was on. The poor little guy's skin was so yellow and he was just pretty miserable. I brought the kids' costumes up to the hospital - Benjamin was the Green Goblin and Zachary was Baby Spider Man - and Benjamin went up and down the halls, dragging his IV pole, and scaring the nurses. He really made the best of it!

Yesterday Benjamin had a really big day. During his morning recess I received a call from the school (my second call this week) to let me know that Benjamin had hurt his head again at recess. The day before his friend ran into him by accident and Benjamin was knocked to the ground and he hit his head - on the shunt side, but it was his temple that was hit, not the shunt, thankfully! Then yesterday morning he was playing on some of the playground equipment that isn't very sturdy - its one of those bridges that everyone can jump on (definitely not the place for a child with balance issues!). I had talked with him before to tell him not to play in the tunnels because when he stands up in there he forgets to duck his head, and that was the reason for a phone call from the nurses office once before. I didn't realize there was one of those "bridges" on the playground, though. Now we've included the bridge as something else to stay off of - just to be safe. He was very agreeable to that. So yesterday he bruised up his other eye.

At 3:00pm I went over to the school to have a meeting with Benjamin's teacher and the school psychologist so we can get things underway to have him tested so he can receive some extra help through the school. He's being tested for learning disabilities and to see if he fits the criteria for Traumatic Brain Injury as a result from the tumor and the treatment he received - chemo and radiation. They are also going to repeat the IQ testing that was done back in May when he had just finished chemo. They will use a different type of test since the last test was so recent, but this will help give us some more answers. He did really well on his last testing, but he's struggling with his schoolwork, so we know something is going on since the two results aren't matching up. It has got to be so frustrating for him since the areas he is having trouble with are areas that he breezed through back in Pre-K. God bless him, though, he has such a great attitude! He just keeps plugging away. I'm so proud of him because I know that I would have become incredibly frustrated long before this if it were me. He is going to be evaluated for OT and PT, his vision will be tested again now that he has the glasses, and I need to get his most recent hearing reports from Children's to add to the file. I'm so happy that things are moving forward so we can all help him. I really feel for him that his problems didn't end when his treatment ended, but I'm so grateful that he has made it to this point!! While these issues are very important to his education, they are so minor in the big scheme of things, and we havn't forgotten that. It just makes me so happy to see that little guy get ready for school, to hear him tell funny stories about his friends and the things they do at school, and to help him with his homework. He will get though these other issues.

My meeting ended just before it was time for the last bell to end the school day, so I moved Zachary's stroller out of the way so we could wait for Benjamin. A few minutes later he came bouncing down the hall, and I watched him walk up to his principal and say (with a great big grin on his face) Happy Halloween Mr. Wilkinson!! The little things he does just make me smile. I also noticed that he had a huge pink mark covering his whole cheek. Apparently while the kids were all seated on the floor for an activity just before the end of the day Benjamin got kicked in the face by another child (by accident) when she got up to move. It was one of his little friends and she felt so bad and immediately apologized. She must have really nailed him, though, because his face is still pink today. Now Benjamin looks like he was in some kind of fight because he's got scrapes on both eyes and a big pink mark on his cheek. I think he kind of likes it though, like he's some kind of tough guy - haha!

I picked him up from school and we raced up to Children's for OT, and Benjamin did a quick-change in the parking lot from Benjamin Jones "student" to Spider Man! He was so excited to show his costume to the therapists at Children's, and they all made a big fuss over him which was very sweet. His OT therapist, Karen, had some great news about Benjamin in that he has met some more of his OT goals, so she is adding some new goals to his list! Yea Benjamin!! His paper cutting has improved so much, and he can almost tie his shoes completely. He knows the steps to tie his shoes - another thing he used to be able to do before all this started - but his hand strength and coordination have prevented him from being able to get the job done. Now he's almost there!! She tested his hand strength and that has improved another 5lbs, too.

Before we left the third floor for OT Zachary and I took a little walk over to the Neurosciences Unit that is at the other end of the floor. I can't stand that unit because that is where we received all of the worst news about everything going on with Benjamin. That's where we had all of our conferences with the doctors about what treatment choices we had and listened to all of things that no parent ever wants to face for their child. That's also the place where we feared we might lose him when he had to have an emergency "drain" surgically placed in his head - right at his bedside - because the fluid in his brain had built up to critical levels. There are just so many awful memories from that place. That unit always felt so closed in and depressing because it was one of the only units that had not yet been remodeled in the hospital. It was such a feeling that I can't even really describe to look through the window to that unit and see it completely torn apart and in ruins as the remodeling work has begun. I know it can't erase the horrible things that happened, but it feels so good to know that the unit no longer exists in the form we knew so well. The doctors and nurses on that unit were amazing, don't get me wrong. They saved his life with both surgeries - to resect the tumor and to perform bedside surgery - so all of the bad memories are NOT because of any of the people there or the treatment he received, it's all related to being the "place" where we were when we heard our worst nightmares come true for our child. Even now when I run into the nurses from that unit who cared for Benjamin, they still remember him (and this is 18 months later, and Benjamin really only spent a total of about two weeks on that unit - the majority of his time was spent on J5 Oncology) and they always ask about him. I think that says alot about the care he received!

After OT we crawled through afternoon rush hour traffic to get back home for Trick-or-Treat night here. He was so worried we would miss it! We made it in plenty of time though, and Spider Man and the little Bumble Bee were all set. Zachary was going to be Elmo, but he didn't like the way the hood that went over his head with Elmo's head on top of the hood fit on his head - it was a little bit big for him to handle. So Zachary wore the little costume that Benjamin wore - a Bumble Bee - when he was two years old. Boy, did that bring back such sweet memories to see him in that outfit. Everyone said that Zachary looked so much like his brother wearing his costume. Maybe next year he can be Elmo!

We went trick-or-treating with two other neighborhood families, and Benjamin had the best time. I think he ran the whole time, from house to house, and half the time I could barely keep track of him. The kids had lots of fun running around together, and I kept thinking that I couldn't believe that two years had gone by since we had last been out there for this. Time kind of melted away last night. After we all walked around the big block everyone decided to go home and make a pit stop. Every other word out of Zachary's mouth was "eat, eat" (which he says when he's hungry, and "poopie, pee-pee" which meant that he felt he needed a diaper change - haha! We came in and while I fed and changed the baby really quickly Benjamin came in and asked if I thought his Green Goblin costume from last year would still fit. I told him that it probably would, so Benjamin decided to go put that costume on before we headed back out through the neighborhood. We just cracked up that he thought of that. So we went back out and finished up trick-or-treating as the Green Goblin. I guess he got the full experience from both costumes now.

It was a really fun night and we enjoyed seeing Benjamin back out there having a great time with all of his little buddies. We now have plenty of candy to satisfy all of our sweet cravings as well! We will try to get some new pictures posted this weekend - our camera battery is dead right now, but we'll work on it!!

We hope everyone had a great Halloween, and we thank you for continuing to check in on Benjamin!!

Love, Anne

Tuesday, October 28, 2003 10:30 AM CST

Hi everyone!

Things are cruising along here now that all the boys are feeling better. Benjamin went back to school yesterday after being out last Thurs. and Fri., and he didn't have too much work to make up. Unfortunately today is his marathon day - school, PT, very quick dinner, CCD (religious ed. class), and then off to bed. Wed. mornings are not pretty around here when I try to haul him out for school - haha!

Benjamin came home from school yesterday with some very exciting news. He announced that he was on the Dean's List. Then he said "I have no idea what that means." I told him that the only Dean's List I knew about involves grades, but the first graders at his school don't receive a report card the first time around. They kind of let the kids ease into the demands of the first grade year, and they get their first report card at the mid-term period. I told Benjamin that we'd have to take a look in his back-pack to see if there were any notes explaining it all. Sure enough there was a note stating that Benjamin was on the D.E.A.N.'s List for this month - Demonstrating Excellent Acts that are Noteworthy List. Benjamin asked me if this was about his grades, and I told him that this is better than being about grades. Each month one child from each class is chosen to receive this award for demonstrating consistent behavior showing respectfullness, responsibility, and good citizenship, and Benjamin was chosen this month!! I told him that Daddy and I want him to always try his best with his schoolwork, but this DEAN's List means that he's a really good little boy and that is the most important to Daddy and me. I wish you could have seen how his face lit up - he was so proud!! I really think this is a big boost for his self-esteem. To go along with this award Benjamin gets to have lunch (pizza and pop) in the office with the dean and the other classroom winners, he receives a gift certificate, and his name will appear in the school newsletter. Needless to say, he is very excited!

Day after tomorrow is trick-or-treat night here. I can't wait to see the boys all dressed up in their costumes! Benjamin can't wait to get back out there this year - let's hope for good weather!

Zachary had his 18 month check-up last week, and he's now 24 lbs. 13 oz. and he is 33 inches tall. He's working on his molars - finally! - so he's a little cranky from time to time, but other than that he's a little sweetheart! He's reached a major milestone - he's finally sleeping in his own bedroom for the first time in his little life! I had put the boys' beds in the same room about a month ago, but we realized that Benjamin was never going to get any sleep if they shared a room at this time. Maybe down the road we can try putting them in the same room together again. So now Zachary is set up back in his room, and he has slept in there for the past three nights. Now he's not sleeping in his bed - he's been sleeping on the air mattress on the floor with me, but at least we've made it in the room - haha! I figured that I would sleep in there just for the time being until he can get used to sleeping in his bed. Since he has been sick I havn't pushed it too hard, but now that he's better we might try him out in his little toddler bed tonight. He really likes his room, though, and enjoys going up there to play, so I guess we're making progress!!

Our little niece Ashley is getting a cast today - she broke her elbow - so we hope she's feeling better! She called Benjamin to talk about casts with him, and they had quite a little chat. He's seven and she's almost five years old, so you can imagine how cute they sounded. She told him what happended, and he said "don't worry, I've broke both my arms before." He told her that it doesn't hurt at all when they put the cast on and take it off - he wanted to make her feel better. Hopefully her arm will heal up quickly, and she won't have the cast for too long!

That's about all the news from here. Thank you so much for remembering Benjamin in your prayers! Please pray extra hard for him as we're approaching scan time again.

Love, Anne

Saturday, October 25, 2003 10:27 AM CDT

Hi everyone!

Well, things around here are starting to look up a bit for my three boys. Benjamin has been home from school since Thursday with a very bad cough. He's feeling better, though, but he did have to miss his Tiger Cubs meeting, swimming lessons this morning, and a birthday party this afternoon. He's disappointed, but handling it fine. He hasn't had a fever, and there have been no other symptoms - just a bad cough. He's thrown up every morning for the past three days which is pretty unsettling to him - and us too - since this was the way he lived for months and months not too long ago, but we've hopefully been able to convince him that it is just related to how hard he has been coughing. I think another part of it may be related to weaning him off one of his medications a little bit too soon. He is completely off the medication Reglan (for reflux) which originally he was on four times a day. Yea!!! The only daily medication he has left is a Nexium pill that he takes every morning, and we had tried to wean him off of that. Maybe he's not ready for that, or maybe now just isn't the right time because of all the draining his sinuses are doing. We're going to start that one back up again and just see how it goes for a bit. Considering the fact that in the not so distant past he was taking four+ medications a day, plus an antibiotic on the weekends, I guess that this is not too bad at all! He is scheduled to be finished with the weekend antibiotic after his Nov. 7th MRI - as long as everything goes well. The doctors felt he should stay on the antibiotic for six months following the completion of chemo until the time when his immune system would be back up and functioning normally. I can't believe he is almost to the point of six months past chemo!! We just hope and pray that it continues!! Anyway, even though he still has the cough he is back to running around the house and instigating "trouble" with his baby brother - haha! It is not real "trouble" though. Zachary started running a fever night before last, and yesterday he just acted crabby all day. Benjamin, however, was perking up, and everything he did bugged Zachary and made him screech. This morning Zachary just had a low-grade temp., and he has perked around quite a bit. Neither one of them has much of an appetite, but at least they are doing a good job of drinking lots of liquids. The two of them are just sitting on the floor together playing with "play" money. He's like Benjamin's little shadow - if Benjamin gets up to walk away then Zachary pops up to follow him.

That brings me to my other "boy" who hasn't been feeling totally up to par. Brian went to the doctor on Friday, and he has a sinus infection. He's doing fine, though. These kind of little "bugs" used to bother me and worry me so much, but after the year that Benjamin went through it almost feels good to have these kinds of illnesses around! These kinds of things go away without requiring chemo or radiation or months of feeling horrible. I used to be the biggest worry-wart about these things. Boy, has everything been put into perspective or what?!

Benjamin and I have been working really hard on his reading, and we think we're seeing some improvement. That little guy tries so hard - I wish this could come a little bit easier for him. He doesn't really remember (but I do) that during the time I was pregnant with Zachary and on bedrest he and I practiced his reading every day. At that time he was easily reading three and four letter words. These same words sometimes stump him now - he has problems with short-term memory and retrieval. The amazing thing is that Benjamin still has the same attitude that he had way back then about reading - to him it is still something fun and something that he tries his best with. If it were me, I know I would be getting frustrated and angry and ready to throw in the towel, but not him. Of course sometimes you can see that he's getting a little bit frustrated or worried about why he isn't getting it as quickly as he would like. We had a long talk about the IQ tests that Children's ran when he finished chemo. I hadn't discussed any of it with him before, but I felt like now he really needed the confidence booster. He did very well on his tests, and actually everyone thinks he will probably do a little bit better when they re-test him because of the fact that he was so tired at the time of the testing and he basically hurried himself through it all so he could finish faster. It had only been a week since he had finished treatment and he was wiped out. I told him that those kinds of tests showed that he is a smart little boy, and the problems he's having with reading, writing, and spelling aren't because he's not smart - the tests are telling him that he is smart. It's just that the signals are getting a little bit mixed up because of the radiation he had. We can work around that, though, and he will be able to read, write and spell as soon as we find out the way to learn that works the best for him. He had a big grin on his face after that, and we remind him of that whenever he's stumbling on the words.

Actually this week things are getting under way for evaluating Benjamin at his school for just this reason, and to hopefully get things going for him to receive OT through the school. He's still getting PT and OT through Children's, though, so he's not missing out on anything. We're having Benjamin evaluated because while he is doing well health-wise, he definitely needs some more OT and he's having the reading, writing and spelling issues. Last year for his IEP he was considered OHI - Other Health Impaired, and that qualified him for home tutoring, etc... through the school district. Now that he is off treatment he is not considered OHI anymore, but the side effects from everything he went through are still there. We have to have him evaluated to be under a new category, and it looks like it will either be Traumatic Brain Injury or LD. I was told that he would probably receive the same type of help at school - tutoring, etc... - but they have to have a category to put him under. We've wondered about dyslexia or a learning disability like that because he does a lot of letter and number inverting, his handwriting samples look alot like the handwriting samples of children with dyslexia, and from what we've been researching he matches some of the other symptoms. It is so hard to tell, though, if the problems are a true learning disability or a result of the trauma to his brain. Either way, we should be getting some answers soon, and most importantly Benjamin will be learning in the way that is best for him. His teacher has been so good about working with him and working around and adapting to any way that helps him learn better. We have been so pleased!! Everyone has been so supportive of him and encouraging of him - I really believe that has helped his attitude remain so positive. We try to boost him up as much as possible, and it is such a relief to find that everyone working with him at his school - his teacher, the teachers giving him extra help in writing and reading, the principal, and other teachers in the school who aren't really his teachers, but are keeping an eye out for him - they are doing the same thing for him.

The boys are getting ready for Halloween. Benjamin is going to be Spider Man and Zachary is going to be Elmo - their costumes are so cute. We'll have to be sure to post some pictures of them all dressed up. We did some decorating outside, too, with orange lights and lighted pumpkins and a big light up jack-o-lantern and a big light up Frankenstein. I've got some purple lights that need to go up, too. I hope Benjamin doesn't come down with any illnesses this year at Halloween. Last year of course he couldn't trick-or-treat because he was in the middle of his protocol of extremely high dose chemos and stem cell rescues, but we were going to have him dress up and stand in the window to be a part of it all at least a little bit. Then he started having liver toxicity problems and he ended up being admitted over Halloween. I brought the kids' costumes up to the hospital, though, and he had a ball going up and down the halls "scaring" the nurses. Little kids can always make the best out of a yucky situation!

Well, that's about all the news from here. We hope everyone is doing well, and we thank you for checking on Benjamin!!

Love, Anne

Thursday, October 23, 2003 1:25 PM CDT

Hi everyone!

Thank you for all of the prayers for my Dad! He finally got to come home from the hospital day before yesterday, and he is doing really well. He had spent the better part of this month up at the Cleveland Clinic, and he and my Mom are so happy to be settling back in in the comfort of their own home.

I figured now was a good chance to update since Zachary is sleeping and Benjamin is busy playing a game. Hope you all have a had a good week so far. Benjamin has had a pretty good week, but he's home from school sick today. When I picked him up from school yesterday he was coughing just a little and I thought his voice sounded a little bit funny. Then last night he started coughing one of those "barky" kind of coughs and he was up a good share of the night either coughing or standing in the steamy bathroom. Thankfully he is much better today. He doesn't have much of an appetite for solid food, but he's been good about drinking tea, juice, chicken bouillion, and pedialyte popsicles. He also took a little nap this morning. Now he says that his throat doesn't hurt anymore and the cough doesn't sound so "tight". From coughing so much he did get a little sick this morning, and that scared him more than I realized at the time. Later this morning he told me that he was afraid the throwing up meant he was "sick" (cancer) again and that he was going back to the hospital. I knew that for me and Brian we would always have those little thoughts in the back of our minds whenever he got sick from now on, but I didn't think he would think about that, too. I hate for him to have those worries, too! At least he didn't dwell on that for too long - I told him that everyone gets sick from time to time and it doesn't mean anything serious at all. Now he's back up and going, but he definitely won't be going to his Cub Scout meeting tonight. Hopefully he can go back to school tomorrow because it is his Parents' Luncheon and Music Concert. He was so disappointed this morning because he thought his concert was today. He told me he would sing the special song the class has been practicing for me here at home. That was all the sweeter because at that hour this morning he barely had any voice at all.

Well, I had wanted to write a little bit more, but my little one is awake now, and I can never get much done on the computer because he ends up climbing all over me.

Thank you for looking in on Benjamin!

Love, Anne

Sunday, October 19, 2003 3:28 PM CDT

Hi everyone!

We hope you had a great week! This week was a short one for Benjamin - he had Thurs. and Fri. off, so we packed up and headed for Ashtabula. We just got back this afternoon. Benjamin had a good week - he's pretty busy with school, homework, PT and OT, CCD classes - religious educ. classes, and swimming lessons. We had our first parent/teacher conference this past week, and while it was a little discouraging, I'm so happy with the people at Benjamin's school who are working with him. He's doing well with his math and art, and he's improving with his handwriting, but he's having quite a struggle with reading. We've been working really hard, both at school and at home, but this seems to be one area that is not coming easily. The words that he has worked on for some time are locked into his memory and those words he does fine with, but every time he has a new set of words (which is all the time) it takes so much repetition for him to be able to remember the words. His teacher has been really great about getting extra help for Benjamin, though. Every day he has reading with his first grade class, and then he also has another reading class with two other children with a different reading teacher. Each reading class has two books to work on every night, so he's getting lots of extra practice. It just takes a really long time to get new words locked in because of his short-term memory problems. She also has another teacher spending some extra time with him to work on his handwriting, and that has made quite a difference! He's still having a hard time remembering to leave spaces between words, but his teacher is getting some special paper that has lines / between each word space. His reading is behind where he should be at this point but we're hopeful that with all of this extra help, and extra practice at home, will help. His teacher has also noticed that he does better on tests if she works with him individually or has another teacher work with him individually. This helps him focus only on the test, not on the other classroom distractions, which typically happens to kids who have had cranial radiation. We're so happy that the school is working with him in this way and allowing to learn in whatever adapted way seems to be the best for him. I can only hope and pray that his future teachers are this wonderful! Mrs. Fortenbacher said that she just loves Benjamin, and she said he always tries his best at everything she asks of him. I asked her how she felt he was fitting in overall with the class and right away she said that everyone loves him! The kids' desks are arranged in groups of six - two rows of three desks that are facing each other - and she said that the kids in his group are very sweet about giving him little reminders if he seems like he's a little bit lost. Sometimes when the kids are given directions that contain multiple steps, Benjamin gets a little bit mixed up - he might remember only the last step or two, but the kids always give him a nice little reminder and make sure he's all set. I thought that was really sweet! A couple of the little girls in his group like to help him pack up his book bag sometimes. I got a kick out of that, and I said "little girls really do look out for the kids that sometimes need a little bit of help," and Mrs. Fortenbacher laughed and agreed that the girls like to "mother" the boys in the class. I'm just so relieved that the kids have taken the attitude of being friends and helping him out rather than leaving him out! I hope that this continues for him. He's been really happy with the kids in his class and he tells us about this little group of three other boys that always meets up with him on the playground every day to play. This is just what we hoped for him! Even if he's having some trouble with some areas in school (which was totally expected after talking with his radiation doctor, he's a happy little boy, he's making friends, and he's back out there doing what little kids do best - living a basically carefree life.

On Thurs. night we headed up to Ashtabula for the long weekend, and it was great to get away. Unfortunately my Dad wasn't home from the hospital yet, so we missed seeing him and my Mom. The boys had lots of fun playing at Gramma and Papa Jones' house, and they loved seeing their cousins. We also visited my Grandma - they played restaurant and board games. This morning we packed up early and went to Cleveland to stop and see my Dad on our way back home. He's doing really well and he's hoping to break out of the hospital in the next few days! Thank you to everyone who has been praying for him these past few weeks - I've really appreciated your e-mails and guestbook entries!

Benjamin is really looking forward to this week because his school is having a party night at Magic Mountain - lots of video games! - and he was invited to a birthday party at Magic Mountain on Sat. This Friday is also the Parents' Luncheon at his school, so I'm going to enjoy lunch with my little guy this week! He's also got another Tiger Cubs meeting, so he's looking forward to that as well. Zachary has his 18 month appt. at the doctor's office tomorrow so it will be fun to see how much he's grown. He's a little comedian - talking all the time! He loves to imitate everything we do and say, and he's Benjamin's biggest fan!

Well, that's about all that's new here. Thank you so much for checking in on our little guy!

Love, Anne

Saturday, October 11, 2003 7:03 PM CDT

Hi everyone!

Hope you all have had a great week! Things are settling back in here, and we're getting ready to start a new week. We were up to the Cleveland Clinic today to visit with my parents. My Dad had to go back in on Thurs. night because he developed a bit of an infection, but the doctors jumped right on it with strong antibiotics, and he is doing very well again. His temp. is back down to normal, his appetite is back, and he's perking around again. Thank you to everyone who has sent an e-mail or note in Benjamin's guestbook with prayers and good wishes for my Dad - it is so appreciated!

Benjamin had a good week at school, and this coming week are the first parent/teacher conferences. He's doing very well in math - that had to have come from my Mom (a math teacher!), and his handwriting is really starting to show improvement. We thought we were going to have to switch him to using blank paper rather than lined paper. For some reason he's had a lot of difficulty writing on lined paper- his writing isn't as neat and the letters go all over the place rather than sitting on the lines. When he uses blank paper it's the complete opposite - neat writing and letters going in a straight line. It seems so odd that this would happen - you'd think it would be the opposite effect. On Friday, however, Mrs. Fortenbacher showed me that day's writing practice, and Benjamin had done such a great job! We were all so pleasantly surprised. Maybe he just needed a lot of extra practice before it finally stuck, so we've decided to just ride it out for awhile and see how his writing progresses. He is having a great deal of difficulty with his spelling, and we think this is something he may be just rusty on because at the end of the summer after working with Mrs. Brinda (his tutor) he was able to spell almost any three or four letter word he was given. It is frustrating for him at times that some things seem to require so much repetition before he can remember them, but Mrs. Fortenbacher said that he works so hard and she knows that his difficulties don't stem from a lack of trying. She's also noticed that when the class is taking tests he sometimes seems almost overwhelmed by everything going on around him as he tries to concentrate on his test. Benjamin's radiation doctor told us before that this is pretty typical for their kids that they follow after the completion of radiation. For some reason all of the stimulus of the classroom gets in the way of their concentration. Mrs. Fortenbacher has been really wonderful about helping Benjamin to deal with this, though. She tries to work with him one-on-one during tests or she has another teacher or aide work one-on-one with him. She's noticed that this seems to help him quite a bit. All of these things are side effects that we were told to expect so none of it is surprising. I'm so sorry that he has to deal with it, but it's all worth it if the radiation he received keeps him healthy.

While I was up in Cleveland this past week I had an interesting conversation with Benjamin one night. He was very excited and he told me that he was in People Magazine. I was shocked, and I repeated it back to him and said "you are in the People Magazine that Mommy reads?!" He was convinced that he was, and he put his Daddy on the phone to tell me more about it. As it turns out, Benjamin is not in People Magazine, but instead his picture and a story about his throwing out the first pitch at a Clippers game this past summer were included in the Make-A-Wish Magazine that just came out. We had to laugh! It was a very cute picture and a really nice surprise to see him in there.

Benjamin also had a Tiger Cubs (Cub Scouts) meeting this week, too. He is really enjoying being a part of this group, and he's happy that one of the little boys that he plays with on the playground every day is also in his den. When he came home from his meeting Benjamin proudly showed me his Cub salute and recited the Cub Scout motto. He still needs a little prompting to remember the motto - more of the short-term memory - but he's trying! Brian said that Benjamin was so funny at the meeting because when it was his turn to show the leader how he does his salute. It is supposed to be two fingers on your right hand (the index and middle finger) to your right eyebrow, but he was putting his fingers up to his left eyebrow - all the way across his face. Then when the leader was trying to explain how to fix it Benjamin got more and more mixed up and had his arm all twisted around before he finally got it in the right place - he was getting the giggles, too. I'm so happy he's found a little club that he likes with kids that he has fun with.

Today we had a nice visit up in Cleveland with my parents - Benjamin was really excited to see them because he hasn't seen them since his birthday party over Labor Day weekend. He made lots of pictures and brought lots of stickers to cheer up Boppa (the name he has called my Dad since he was a baby). As I said before, my Dad is doing much better and hopefully he will be home in a few days.

Tomorrow we were invited by Nancy Brinda (Benjamin's tutor last year) and her family to go to an open house at the Chimp House. Benjamin is so excited to go - Nancy's daughter told us about a program on the Discovery Channel last night featuring a story about Keeli and Ivy - two of the chimps we will be seeing tomorrow. Benjamin really enjoyed the show and now he's even more excited to go tomorrow. Afterwards we're going over to the Brinda's for dinner, and we're all looking forward to that. Nancy was really wonderful to Benjamin all last school year and through the summer, and we really miss her. I'm so glad we've been able to stay in touch and have these get-togethers. She's also given us alot of very good advice on how to help Benjamin as he is adjusting to being back in school and how to deal with some of his learning difficulties that have popped up. I'll update more after our trip to the open house.

Thank you all for continuing to check in on Benjamin and for sending along messages of encouragement for him. He loves hearing from everyone!

Love, Anne

Wednesday, October 8, 2003 4:05 PM CDT

Hi everyone!

Sorry we havn't been in touch for a little bit. Zachary and I just got home from Ashtabula this afternoon. My Dad received some very surprising news just a couple weeks ago when he went in for routine stress test. After being sent on for a heart catheterization at the Cleveland Clinic it was discovered that he had two blockages and would need to have open heart surgery to have a triple bypass. On the positive side, he was assured that his heart had not been damaged at all, and it was pumping perfectly normally. Zachary and I joined my sister, my parents, and my aunt and uncle in Cleveland for my Dad's surgery and recovery. Benjamin stayed behind with his Daddy because now we have to follow a school schedule - we're not used to that. My Dad's surgery was this past Thurs. and he came through with flying colors!! He was discharged from the hospital yesterday, just five days after surgery, and in the words of his doctor - "your heart is perfect - go home and enjoy the rest of your life!" Those are the best discharge instructions I've ever heard!! While he is still quite tired, he is doing just great and is perking up more and more every day!

We're still getting settled back in, but I just wanted to update a little and I will try to update some more tomorrow. Benjamin is doing just fine, and he and his baby brother are having a great time playing together - they missed each other!

Thank you for checking in on Benjamin!!

Love, Anne

Monday, September 22, 2003 3:54 PM CDT

Hi everyone!

Hope you all had a great weekend! We all kept busy and had a good weekend, too. Benjamin and his Daddy didn't make it to the Pickerington Tigers football game on Friday night because we ended up having so many errands that we didn't even eat dinner until 8:00pm. My car was in the shop so we had to pick Brian up from work downtown, and then we had to head right over to Children's to pick up Benjamin's new glasses. They are so cute - we will try to get a picture posted soon! Then we had to pick up my car, go birthday present shopping and get dinner. Since it was so late Benjamin and Brian decided to stay home, but Benjamin had a new rented game that he was excited to try out.

On Saturday morning Benjamin had his next swimming lesson, and it went really well. He loves to get one of those "noodles" and float on his back. He forgets what they're called, though, and calls them "water weinies" - what a nut! After swim class was over we ran into another family whose son was in Benjamin's Pre-K class. Benjamin never got to finish out the year because he was diagnosed about two weeks before the end of the year. It was really too bad because he just never went back - that was the end of it for him. The boys were so funny as they caught up with each other. At first they didn't recognize each other, but the other little guy said "wow, I remember you - you were the kid who liked the blocks and playing outside!" We all cracked up!

Then on Saturday night Benjamin went to his best friend Rochelle's birthday party and sleepover. When we dropped him off he wasn't sure if he was going to stay all night, so we told him that we'd stop back after we went over to the mall to buy new shoes for Zachary. The kids were all having a ball running around and playing outside. Brian, Zachary and I went over to the mall in Lancaster to look around and do a little shopping. Anyone who knows Zachary knows how much he loves his shoes, so he's been most upset since he outgrew his pair of tennis shoes. His eyes just lit up when we walked into the shoe dept. at Sear's, and Brian and I picked out a little pair of shoes. He was so cute when he tried on his shoes and took a little walk around in them to be sure they fit. As he walked he found out that his little shoes light up - we didn't know that when we picked them out. He got so excited that he started clapping his hands and giggling - everyone around us just started laughing.

After a bit we went back to check in on Benjamin to see if he was going to stay all night, and he'd decided yes. So we dropped off all of his stuff and headed back home. Then at around 11:00pm he called us to say he was coming home - he always does that when he's about to go to bed. He ended up settling down and staying anyway - he was fine. Brian went to pick him up on Sunday morning and he had a great time. He, Brian, Rochelle and her Daddy are planning their next camping adventure for this weekend. Hopefully the weather will be be nice and warm for one more outing. On the way home Benjamin and his Daddy stopped to pick up some supplies they will need and they even got a little sweater for Emma - it's really cute! Maybe we'll get another picture of her in her new "outfit" posted. They were afraid she might get too cold overnight.

Today was back to school and Benjamin went off to school without his glasses, so I don't know if they are helpful while he's working yet. He did say over the weekend that things look like they are really popping out better, so that's a good sign. I didn't realize he hadn't packed his glasses in his bag until the end of the day when I was getting ready to go pick him up. I asked him about it after school and he said that he didn't want to wear them because he was afraid kids would tease him. We had a little talk about it and I told him that tomorrow he really had to wear them, and he agreed. I think he will be pleasantly surprised.

Well, it's about time for some dinner so I should end this. Benjamin has PT tomorrow and CCD (Catholic religion class) tomorrow evening, and after that he has the rest of the week free. I'll update more later on in the week, and hopefully we'll have some more pictures up soon. Thanks for checking in on Benjamin!

Love, Anne

Friday, September 19, 2003 9:50 AM CDT

Hi everyone!

Hope you all have had a great week! Benjamin's week has been good, and he's looking forward to fun this weekend. School has been going well so far. He's making more friends on the playground, and when I pick him up at the end of the day I'm hearing kids saying "Bye, Benjamin!" Of course when I ask him what the kids' names are he can never remember, but he always says "I don't know his name, but he's my friend." He is coming home almost daily telling me that someone has told him that he's going too slow,though. This seems to happen in the hallway when the class is either going to lunch or recess, and someone says he's walking too slowly. We told him that the kids are probably just anxious to eat or play, and it doesn't seem to bother him too much. Benjamin doesn't move too quickly still and that's leftover from chemo or after-effects from surgery, but he doesn't let it stop him from doing what he likes. He said that whenever it happens his teacher usually has heard the remark from the other child, and she always tells the child that Benjamin is doing just fine. Benjamin said that the kids don't say it in a mean way, and I don't think the kids would really be old enough to understand the link between his scar (which they can see) and the reason he doesn't walk as quickly. I honestly believe that they're just being kids who are anxious to get where they're going, especially since he says they don't say it in a mean tone. We also told him that every time someone says something he shouldn't automatically assume it's a put-down. He came home one day and was upset because he wanted to play on some piece of playground equipment, but he was told by the two kids already on it that only two kids can be on it at one time. He was sure that they were trying to leave him out and was quite upset. I asked him if he had asked the teacher what the rules were about how many kids could play on the equipment because maybe that really was a rule. He hadn't asked about it because he didn't believe it was a rule. Then yesterday he came home from school and said that he had heard some other kids talking about the same piece of equipment and they were saying that only two kids could play on it at a time, so he said he felt kind of silly for getting so upset. Now at least he believes that kids aren't looking to leave him out, and he knows to ask the rules. Oh well, these are lessons that everybody has to learn - haha!

We're still working on getting things set up for Benjamin to receive OT through the school, and I think things should be all worked out pretty soon. It's just kind of difficult because Benjamin still has some deficits and issues that need work, but they aren't extreme issues that place him very definitely in one category or another for qualification for services. I spoke with someone yesterday, though, and while he didn't qualify under OHI (other health impairment) anymore, he may now fit into the Traumatic Brian Injury category. What is good is that everyone is working together, and with us, to get things straightened out as quickly as possible. Benjamin's OT and PT therapists have been looking into it, as well as Benjamin's nurse practitioner, Suzanne. I've also had advice from Benjamin's tutor from last year, Mrs. Brinda, and his teacher this year, Mrs. Fortenbacher. We've been trying to read and research as much as we can, too, because now we have entered a whole new area to have a crash course in learning. Last year it was a crash course in cancer, treatment, and home care for all of his needs. I'm much happier to be learning about how to help with his back to school and back to typical life needs. His therapists at Children's have been very kind in helping us work out scheduling for him in the meantime while we get all of this worked out.

After school today we are headed back up to Children's again to pick up Benjamin's new glasses - he is so excited!! He still asks every once in a while if his glasses will make him ugly, but we always tell him that he looks so cute in the glasses and absolutely nothing could ever make him ugly. Hopefully this weekend we will put up a new picture of him in his new glasses!!

Tonight Benjamin is hoping to go the Pickerington Tigers football game with his Daddy. Brian would like to do this with him as a kind of "guys night out." It was pretty rainy this morning, but it is clearing off now, so hopefully they will get to go to the game. Tomorrow morning Benjamin has his next swimming lesson, and he's really looking forward to that. Ask any kid who was in treatment for cancer and had to have tubies (these cannot get wet), and it seems like every one of them says that the first thing they want to do when the tubies come out is to go swimming. He was really excited when I told him that he gets to go back in the water tomorrow. Then tomorrow night he was invited to his friend Rochelle's birthday party. We don't have any plans for the rest of the weekend after that so maybe we can get some more cleaning done around here - haha!

Zachary had another tooth come in - finally! By this time Benjamin had a whole mouth full of teeth, molars and all, but Zachary's teeth are much slower coming in. He has quite a time eating regular foods - he only likes mushy stuff still - so I wish those teeth would hurry up!! He has my cell phone right now, and he's having quite a "conversation" with somebody! It's keeping him busy while I get some typing done, though, so that's a big help. He had been very good at playing independently before Benjamin went to school, but since school started Zachary is stuck to my side like glue. I don't know if he's afraid that if he lets me out of his sight I might go off to school, too, or what, but I'm not getting too much done around here - haha!

That's about all the news around here for now. Thanks for checking in on Benjamin!

Love, Anne

Tuesday, September 16, 2003 8:40 AM CDT

Hi everyone!

*New pictures posted Sept. 15th*

Hope you all had a great weekend! As you can tell by Benjamin's new homepage photo and the new photos his Daddy posted, Benjamin had lots of fun this weekend camping with his friend, Rochelle. The weather was so nice, and the kids had fun bike riding, fishing, making s'more's and staying out in tents. They even showed a movie at the campground - Toy Story 2 - so they had plenty to do. They all had such a good time that Brian said they're hoping to go one more time before it gets too cold.

On Sunday evening Mr. and Mrs. Brinda came over for supper. Nancy was Benjamin's tutor all last school year, and they developed a wonderful relationship. We've all missed her so it was so nice to have them over. Benjamin made a special gift for Nancy as well. We found a store that lets you paint your own ceramics and then they "bake" it for you. Benjamin made a beautiful vase for her and filled it with flowers to give to her on Sunday. He also gave her a thank you card and he enclosed one of his own baseball cards from T-ball - he's so proud of those cards! (Brian is going to try to take a picture of one of the cards and then post it). After supper they even stayed and played for awhile which Benjamin and Zachary loved, and it gave all of us a chance to visit longer. Before they left they invited us to come visit them the next time, so we're all really looking forward to that.

Yesterday morning we were off to Children's again for Benjamin's eye exam. He's in a study that is researching ocular disease, and he has damage that was done from the pressure of the built up fluid caused by the tumor he had and the positioning of the tumor. It will be about a week before we know the results of his tests, but at least these tests aren't the nerve-wracking type that we usually have to wait for. This is checking to see how his brain and eye muscles respond to what he sees. The information will be really helpful in future IEP meetings to plan for his needs.

We checked to see if his new glasses were in yet, but unfortunately they're not yet. Hopefully today or tomorrow they might be in. He was really hoping to have them yesterday - mostly just because he's excited, not because he's having any further problems. He did get to show the frames from the display case to his Daddy, though, and he was able to try them on for him. They look so cute!!

There isn't too much going on this week for Benjamin. He has OT on Thursday after school and then swimming lessons again on Sat. Next week his week will get even busier when CCD starts over at the church on Mon. evenings. He's been so happy to join in with regular activities like swimming, Tiger Cubs (that's the group that's the level younger than Cub Scouts), and now CCD. Fortunately all the meeting times for these activities are only about an hour so its not too tiring for him. We have to order his Tiger Cubs uniform - he's so excited about that. They wear a special orange T-shirt, blue pants, blue socks, and an orange and blue ball cap. I can't wait to see him all dressed up in it!! That's another picture we'll have to post.

Zachary is talking more and more every day. Right now he's having lots of fun calling me "Annie" because he heard Brian call me that. He giggles when I say "no, it's Mommy." He just laughs and says "no, Annie!!" Then he runs off saying "I ginker" which translates to "I'm a stinker!" I've moved Zachary's things into Benjamin's room, and we moved all the toys into Zachary's old room so they have a play area in there now. But when Brian and I were moving the crib we broke it - totally unfixable!! - so we were forced to put a toddler bed in Benjamin's room for Zachary. This was a move we weren't really planning on for him so soon - he's a real climber! He hasn't slept in there yet because I'm still moving toys and little things out of the bedroom that might tempt Zachary out of his little bed. We're going to put a bed-tent over Benjamin's bed, too, to try to cut down on the places Zachary can climb on and jump from - that kid is going to turn my hair snow white - haha! Benjamin's been wanting one of those anyway, and we saw one in a catalog that was shaped like the Space Shuttle. We're going to try to only have the two beds and the dresser in the room so if Zachary decides to get up and wander he won't be able to get into anything. We'll have to gate the door, too. So basically Benjamin still has his own room while we try to work this out. We put Zachary in his little bed to help him get used to it, and he seems to like the bed, but I don't think he's got any plans of his own to actually sleep in it yet. He looks up at us like "you've got to be kidding!"

He calls Benjamin "Ben" now or "Ben-a-min" which is almost the same thing Benjamin called himself at that age. He's also trying really hard to say his own name, but it comes out as "Zashie" for Zachie. He also likes to call Emma (the dog) "din-don" for ding-dong so I guess he's heard us say that a few times - oops!

Well, "Zashie" is calling so I better cut this short. Thanks for looking in on Benjamin - hope you enjoy the new pics!!

Love, Anne

Saturday, September 13, 2003 1:44 PM CDT

Hi everyone!

Well, it's the end of another week, and it was a good one for Benjamin. He was so proud of himself when I picked him up from school on Friday because on one of his papers his teacher had written a note that his handwriting was very nice. His handwriting has been such a struggle for him, so this did wonders for him to hear that. Mrs. Fortenbacher had suggested having him try using a pencil grip, and that seems to have made a big difference for him.

Last night we went to dinner with the Thomas family, and Benjamin had a ball with his buddies Emily, Ben, Dillon and Zoey. It was great to have a night out for the parents, too!! The kids go to school together, too, so Benjamin always comes home with stories about playing together on the playground and seeing each other at lunch. I'm so glad they're having so much fun together!

Today was Benjamin's first swimming lesson in two years. He took lessons for about two weeks at the YMCA when he was five, but since then he hasn't. Last summer it was out of the question because of his tubies, and this summer just went by too quickly. He was really excited about it this morning, and he was ready to jump right in. Brian is going to try to remember to bring the camera next week so we can post some pictures. Anyway, he had lots of fun and asked if he could stay longer. His teacher told him that she would love to let him stay, but the next group was already there for their lessons. When he got out of the pool he came over to me and said "that was so relaxing!" We cracked up! I know Zachary was wishing he could jump in too, but he was very good in his stroller while we waited. We'll have to go over during the week sometime during the Family Swim time so he can have some fun, too.

After swimming this morning Benjamin and his Daddy have been running around like crazy getting all their things ready to go camping with Benjamin's buddy Rochelle and her Daddy. He's so excited about this! He asked us if there would be any bears - I think he was a little worried. He's looking forward to going fishing with Rochelle and he wants to make s'mores tonight. I can't wait to hear the stories about their adventure. It sounds like a great campground - canoeing, horseback riding, fishing, etc...They even brought Emma along for the trip - I'm sure she will love being out with the kids!

I'll update more after their trip to let you know how it all went - I'm sure they will have a great time! Hope its a good weekend for you all!

Love, Anne

Thursday, September 11, 2003 12:56 AM CDT

Hi everyone!

Sept. 12 - We have two new pictures posted - please check them out!!

We hope all is well with all of you. Things around here are settling into a little routine. Benjamin is still enjoying school, and this morning I went over to the school for his IEP meeting. Benjamin was so funny,though, he had me drop him off at the front entrance and then go park the car. He wanted to walk in all on his own. I met with Benjamin's teacher, his tutor, Mrs. Brinda, his principal, the school psychologist, the spec.ed. coordinator, and the IEP coordinator. Benjamin is very lucky to be in the school he is in and to be surrounded by the educators he has. Everyone is committed to doing everything they can to help Benjamin have a successful school year. I have found everyone to be very easy to approach and discuss any concerns with, and we appreciate this so much because as this year and the years to come go on we will be heavily relying on their help with Benjamin.

Benjamin's teacher started out the meeting by saying "I just love Ben!!" That statement was echoed by all those in the room who know him. His principal, Mr. Wilkinson, said that everyone who meets Benjamin just loves him, and that Benjamin always speaks to him in the halls every day. Mrs. Fortenbacher (his teacher) said that Benjamin is very hard working, he pays attention very well, and does all that is asked of him with no complaints - even when she can tell that he's having difficulty (like with his handwriting, as an example). The areas that she feels he may have some trouble with are writing, but she said that while he has a harder time with pencil to paper writing, he does well with a marker and dry erase board. She's also willing to let him use unlined paper if he needs to because when he writes on lined paper his letters go all over the place. When he uses unlined paper he writes much better and in a straight line. She also indicated that he will probably benefit from some extra help in reading, and I'm so happy to hear that he will have someone coming in to work with him on that! Reading is so important and we want him to do as well as possible with that. He had a set of 44 sight words that he had to learn during kindergarten, and he did achieve that goal. However, he becomes rusty at those words quite easily so we have to do a lot of repetition - this is one area where the short-term memory problems have come into play. She said that overall, though, his work is within the range of expected first grade work (at least at this point), and she can tell how hard he is trying. Someone asked the question if Benjamin's work is at the lowest end in the class, and his teacher was very quick to say "no, not at all," so that was reassuring to me. They discussed the possibility of administering some different tests and an IQ test down the line if they see him having more difficulties, and they asked if the hospital had done any testing in that area. Benjamin did have these tests already immediately after finishing chemo ( not at his perkiest point ), but even at that, his scores were in the average range at the high end, so we feel good about that. Benjamin's tutor, Mrs. Brinda, indicated that if he were given these tests again, now that he's had a few months to recuperate, she thought the scores would probably go up. We just hope that school doesn't become frustrating for him because we know how much potential he has.

We had made the decision to scale back on Benjamin's private PT and OT through Children's Hospital because we thought he might be receiving therapy through the school, but I found out today that that won't be possible because he is not considered handicapped. I don't think it should be any problem to just go back to his old schedule at Children's, though. They felt that its also better for him not to be placed under that label if it is not necessary, and they are trying to keep his day as normal and as similar to his classmates schedules as possible. If he were to receive PT and OT at school he would have to be pulled out of his classroom, and they are happy to have him stay with his classmates - we are too! If it were really needed to pull him out of the class for services than that would be fine, too, but he just wants to a sense of normalcy. His phys. ed. teacher is going to do some adaptive things for him in that class so he can be with his classmates at that time too. He really can do almost everything the other kids can do, but I explained that when they do things like walking on the low balance beam Benjamin would not be able to take part in that. They discussed doing different stations of exercises when they do beam work, and one station could be walking heel-toe on a line on the floor, and when everyone rotates around to a different station they could just have Benjamin do the floor line instead of the beam. They also looked over the example sheet of exercises that help Benjamin and thought that these could be incorporated into the class for everyone to do because they are exercises that really are good for everyone. I was so appreciative of this because now Benjamin can do as much as possible with his classmates and not be made to stand out doing his "own exercises."

Because the school year has just begun they don't have alot of data yet to see what direction the year will take for Benjamin, so the plan is to keep a close eye on Benjamin's progress, ready to step in at any time with a new IEP meeting, and help keep Benjamin on course with his grade level classwork. Mr. Wilkinson finished up the meeting by stating how pleased they all were at Benjamin's remarkable adjustment to not only the classroom, but also the whole school environment. He said that Benjamin is always smiling and friendly to all and seems to be quite happy to be at school. His school is not a little school either. I graduated with about 40 people, but Benjamin's elementary school has nearly 830 students!! I'm still adjusting to the size - haha! But really they do a terrific job of making the atmosphere feel like a small school. The school is divided into pods (Benjamin gets a kick out of pod-D, get it, pod-D -potty?!) Benjamin's class only has 22 students in it, so it is a really nice number. The pod Benjamin is in just has about 3 or 4 classrooms and the restrooms, so for him his day is spent in that small group atmosphere. His class goes down to the cafeteria at lunchtime and out to recess, but all the grades go in smaller groups so its not an overwhelming number of kids running around. Even when I go at the end of the day to pick him up I never get the sense that over 800 kids are there. It is really a great system they have.

After the meeting I had the chance to take a peek at Benjamin out on the playground at gym class. They were playing hopscotch - which is not an easy game for him. He knows what to do, but the hopping and jumping takes alot of concentration from him so he won't lose his balance. I was pleasantly surprised to see him just reach out for his teacher's hand as he hopped and jumped - there was no hesitation or look of self-consciousness on his part. I was equally happy to see that none of the other kids seemed to react like he was doing anything out of the ordinary by reaching out for help. Nancy, Benjamin's tutor, also had a chance to go out and say hi. He hasn't seen her since his last tutoring session a couple weeks ago, and he has really missed her. When she came in she told me that he told her that he has a gift for her, its something he made, and it has a "vuh" sound. We were laughing about how he was trying to give her little clues. He did make a special gift for her, and it does start with a "V," but I won't write what it is in case she sees this on his page. She and her husband are coming over for dinner this weekend, and Benjamin is going to give her his present then.

Tonight Benjamin is planning to go to his first Cub Scout meeting over at his school. He's not sure if he definitely wants to join, but he wants to go find out about it. I'm hoping that when he gets there he will find out that it might be something he's really interested in. On Sat. morning he has his first swim lesson since being sick. His therapist, Kathy, said that this will be excellent therapy for him, as well as just being fun! He was also invited to go camping this weekend with one of his very best buddies, Rochelle, and her Daddy. They have known each other since they were babies - they were born two weeks apart - and they've been friends ever since. He's really looking forward to this!

That's about all that's going on around here. Thanks for thinking of Benjamin and our family, and please keep him and the other little ones in your prayers.

Love, Anne

Tuesday, September 9, 2003 12:30 AM CDT

Hi everyone!

Well, Benjamin had his eye appt. yesterday and my little man is getting glasses. He picked them out himself - they are dark navy blue frames, and they look soooo cute on him. The glasses should probably be in by the end of this week or early next week, so when he gets them we'll take a picture and post it. He was so excited about the new glasses and was hoping he would have them right away, but unfortunately we have a little wait. He only has to wear them for reading and school work, and when he looks at the board and watches TV , etc... he's supposed to take them off. We really don't know if they will make a difference for him - after talking with Dr. Hertle I found out that (as we feared) the problems he's been having could be his right eye or it could be the way his brain is interpreting what he's seeing. With so many of the possible problems that may pop up for Benjamin this will be the case. But we're going to try the glasses and see if it makes a difference, and Dr. Hertle said that at least it should help his eyes feel less fatigued. We're just so happy that he's not looking at getting glasses as a bad thing - its just the opposite :he's really, really excited. He did ask once if I thought people would tease him about having glasses. I told that at some point pretty much everyone wears glasses or contacts. He knows a few kids who wear glasses as well, and I asked him if he felt like teasing them in their glasses and he said he never even really notices that they have glasses. I told him that he could walk into any classroom in any school and see all kinds of kids wearing glasses and its no big deal. I don't think he was too worried about the whole thing - I think he just needed to ask the question so he could get a little reassurance and that was all. Everyone in the doctors office told him how cute he looked in his glasses so that made him feel really good, too.

Dr. Hertle said that he'd like for Benjamin to take part in an eye lab study to see how his brain is reacting to what he's seeing. I don't really understand the whole thing, but he said that it is nothing painful. All Benjamin has to do is sit in front of a computer screen wearing a pair of special goggles as he watches cartoon images on a screen. I guess he will be hooked up to some type of monitors that will guage what his reactions are. The doctor said the results will be very helpful to us and will also be used in Benjamin's IEP's. This study should be taking place some time in the next few weeks.

Benjamin also had PT yesterday, and I was amazed that he did as much work as he did given how tired he was. Benjamin was up at 5:30am yesterday complaining of pain in his wrist and leg. He hasn't been having these kinds of pains as frequently lately, so we were a little surprised, but he's also been pretty active lately. Well, by the time he fell back to sleep it was nearly time to wake up for school, so he was in no mood to get up. He and Zachary were both in a yucky mood when they got up for the day so we got off to a bit of a rough start, but he did fine as the day went on. He was so funny at PT because as he was running on the treadmill he decided he wanted to go alittle faster, but he didn't take his finger off the button that increases the speed. All of a sudden the treadmill was really moving quickly and Benjamin's little feet were a blur! His eyes were huge and he had the funniest look on his face as he chugged along until Kathy turned the speed down. Kathy always holds on tightly to Benjamin the whole time he's on the treadmill so there was no way he could have hurt himself, but he definitely learned not to leave his finger on the increased speed button! As we walked out he told me "remember me not to do that again!" He meant "remind" me, so I got a kick out of what he said as well as the way he said it.

Other than that, not too much is new around here. I'm still trying to get the new roomies quarters all cleaned and ready for them. Zachary is all over and into everything so its hard to get much accomplished during the day. Every night I'm trying to get a little bit more done, though. I hope after all of this they enjoy sharing a room because if it takes me this long to get them settled its going to be a while before I'm ready to move them back to their separate spaces again - haha!

Thank you for checking in on Benjamin and for keeping him in your prayers!

Love, Anne

Sunday, September 7, 2003 9:49 AM CDT

Hi everyone!

We have new pictures posted - well, one is old, but the other two are new - please check them out if you get a chance!

Hope you all had a good week! I had expected for Benjamin to be wiped out by this past week since it was his first week of school, but we've been very pleasantly surprised. He does have a period of time, usually around 5:00pm, where he kind of zones out a little bit in front of the TV, but other than that his energy level has been far better than we thought it would be. The past few nights we've had to tell him to go to bed rather than seeing him so tired that he's ready to fall into bed at around 8:00pm as he was towards the beginning of the week. The second morning of school I had to pull him out of bed, but after that one day I've had no problems getting him up and at 'em in the mornings. Benjamin also has enjoyed riding the bus to school the last two mornings. He rides the bus with his friends Emily and Ben Thomas, and he says it is alot of fun. We had been a little bit afraid of letting him ride the bus for fear of bigger kids picking on him, but he's had no problems so far. The majority of the kids on the bus seem to be the younger kids - kindergartners and first graders - so we were really relieved. The bus stop is just around the corner from our house, so we put Zachary in his stroller and we go for a little walk to the stop. Then after Benjamin is off to school Zachary and I go for a little walk around the neighborhood. It has been a really nice way to start off the day for everyone.

On Friday Benjamin brought in treats for his classmates to celebrate his birthday. He was very excited to do this, and he said that everyone liked what he brought. He also had art class on Friday which he enjoyed very much. They have music classes twice a week, library once a week, phys.ed on Thurs., and art class on Friday. Brian went to the open house for Parents Night on Thurs., and Benjamin's teacher said that she was really pleased with how well Benjamin is doing, and the only suggestion she had for extra work that he needs at this time is his handwriting - which we already knew has been a struggle for him. We've been hoping that the further he gets from chemo that there might be some more improvement - many people have told us that this happens. Benjamin will probably have a little extra work to do because of his coordination, but it has improved so much through OT. We've also noticed that his handwriting is much better on unlined paper. However when he uses lined paper - which is what they always use for school papers - his letters are all over the place and not too neat. I had him do some sample writing on both lined and unlined paper, and I'm going to show it to his teacher to see what she thinks as well as bring the samples up to Children's for his eye appt. on Monday. Either his eyes are having a problem or maybe its the way his brain is processing it all when he uses lined paper. We're hoping that its just his eyes because that would be "easy" to correct with glasses or the surgery to tighten the muscles in his eye.

His school is also taking part in a reading program "Patches for Progress" through the local library, and his goal is to read for 300 minutes throughout the month of Sept. He's already up to 135 minutes since starting on Wed., so he decided to keep reading and see how many minutes he can do.

Benjamin's teacher, Mrs. Fortenbacher, and his principal, Mr. Wilkinson, have been so wonderful in making sure Benjamin feels included and special. They have been so easy to approach about any concerns we might have, and its been very comforting to know that they are looking out for him. I also found out in speaking with Benjamin's art teacher that her daughter was diagnosed with the exact same type of brain tumor this past April. She is recovering and doing well and fortunately does not have to have chemo. His art teacher told me that she would keep a special eye on Benjamin because she knows just what he's been through. I was so shocked when she told me that her daughter has been through the same thing - before Benjamin's illness I never realized how many kids are affected by cancer!! Childhood cancer actually is a pretty rare thing, but the numbers of children who are affected still is unbelievable. It still sometimes takes my breath away when I stop to think about it and realize that Benjamin is in that group of children. As he does more and more typcial kid activities it amazes me that he really went through it all. He is such a strong little guy!!

Benjamin and I were both able to speak with Mrs. Brinda, his tutor, this week, also. We have all really missed her!! She told me that she was going to call Benjamin on Friday to see how his first week went, and he was happily looking forward to her call. I was so touched at the end of the conversation (I was in the same room putting away clothes as they talked on the phone) to hear him say "I love you, bye-bye!" He told me that she told him she loved him, too. I think that speaks volumes of just how special his relationship with his tutor was - she was so wonderful with him! We can't wait to see her again, hopefully in the next week or so, for dinner.

Well, this weekend we have our work cut out for us trying to get this house back in order. We let so many things slide over the past year and a half because they were just not as important as the things that needed to be done for Benjamin, but now the majority of our house looks like a bomb went off in here - haha! Benjamin also wants to move Zachary into his room - we were a little surprised that he wanted to give up having his own room, but he's been asking about it for some time now so I guess he's really serious. Today we're going to work on putting up shelves in the closets in both bedrooms for toys, games, books,etc... and on moving Benjamin's new roomie in. I'm embarassed to admit that Zachary has still never spent a night in his crib - he's been in our room this whole time. Benjamin came right home from the hospital as an infant and went right into his crib, but Zachary has only napped in his room. We call his crib the place he sits in while Mommy lets the water out of the tub and finds clothes for him - haha! It was so much easier having the baby in with me for nursing throughout the night as an infant, and then when our schedule was just insane for so long with Benjamin's treatment the only way I could get a good block of sleep time was to have the baby nearby so I didn't have to get up and go after him. Also, to be totally honest, I was terrified of SIDS. I know every parent runs in and out at times to check on their baby's breathing, but after reading that SIDS, while still so rare, is more common than brain tumors in children are I couldn't let Zachary out of my sight at night. Our luck with "rare" things didn't seem so good so I let my fear take over. I know I will pay for letting Zachary get so used to being in with me at night, but I guess the small amount of peace of mind it brought me at the time was worth it. I don't think my sanity could have held out with the additional sleep deprivation there would have been while I ran in and out of his room all night - haha!

Well, now I'm starting to ramble and we've got mountains of work to get to around here so I will sign off for now. Thank you for keeping Benjamin and all the other kids in your prayers!!

Love, Anne

Thursday, September 4, 2003 10:17 AM CDT

Hi everyone!

Well, here I am trying for the third time to get Benjamin's page updated. The first time I got most of the way through and then our computer went down. Our DSL was already down, and we had been able to get into the computer through the AOL which we hadn't cancelled yet. Then when I had almost finished updating the AOL went down, too. We're finally back up and running with DSL again, so I decided to work on Benjamin's page again today. Zachary is now walking around the house saying "I ginker" for "I'm a stinker" because just as a finished my second try at updating, Zachary unplugged the cord for the DSL. I told him he was a little stinker, and now he's taking great delight in walking around chanting "I ginker, I ginker" haha! Well, here we go again for try number three.

First I just wanted to thank everyone for all of the calls, cards, e-mails, and guest book messages since Benjamin's MRI last Friday and for his birthday on Monday. I wish you could see how happy it all made him - he felt so special!! Brian and I appreciate it so much!

Benjamin had a wonderful time celebrating in a big way all weekend with all of our family in Ashtabula. My aunt and uncle drove out from MA for the weekend, and my sister Katie and her boyfriend Greg made the trip from Chicago as well, so that was really special! Benjamin had so much fun playing with everyone! We had a big Sponge Bob party at my parents' house on Sunday and fortunately the weather was great. Benjamin had a lot of fun with his brother, cousins Ashley and new baby Ashton, and some special friends who live across the street from my parents - Emily and Sarah. The kids ran around and played all afternoon, and they all about exhausted themselves whaling on the Sponge Bob pinata - which refused to break open. Brian thought he might have filled it with a little too much candy. He finally had to take a turn to bust it open for the kids, and everyone came running in when the candy came pouring out! It was just a great day that felt so happy and normal. I stopped Benjamin part-way through the party to ask him if this party was better than last year's party. He got a huge smile on his face as he said "this is soooo much better!"

Monday was his actual birthday and he sat right up in bed (we were still at my parents' house, and he, the baby and I were sleeping in one room) and said "hey, I'm 7 now!"

We got back home on Mon. evening because it was a "school night" - we have school nights now at our house!! Benjamin woke up about an hour and half before the alarm on Tues. morning, and he wanted to get ready for school. Brian took the morning off so we could all go over together, and as soon as we got in his classroom Benjamin dropped everything and ran to his desk - he was ready to start the day, I guess. We had to call him back to pick up his things and meet his new teacher - who is just wonderful. She's very kind, patient, and soft-spoken - just like his tutor Mrs. Brinda. He misses her very much, and we're hoping to have Mr. and Mrs. Brinda over for dinner this weekend. He really likes his new teacher and he feels very comfortable with her. He took great pride in showing me around his room at the end of the day when I came to pick him up and have a little meeting with his teacher. She said he had done very well and he is very sweet.

That night Brian asked if anyone had asked about his scar, and Benjamin said that only one person had asked. This person said "oh, you have a little scratch on the back of your head." We thought that was so cute! If only they knew how far off from being a "little scratch" it really was. But we thought it was great that it didn't seem to be a big deal to the kids, and we told him that if anyone asks it's probably best if he acts like its not a big deal to him. We told him he could say that the scar is from his surgery and that he's fine now.

This morning Benjamin decided he wanted to ride the bus with his friends Emily and Ben Thomas. We walked him over to the bus stop and he jumped right on board. I'll be interested to hear what he thought of the whole thing when he gets home later, but he looked happy when the bus pulled away.

That's about all that's new here. Hopefully our computer will stay in working order, and hopefully my "little helper" will let me get this message out here before he comes back over to "help" some more - haha! Thank you for all of your kindess and thoughtfullness in checking in on Benjamin and making him feel so special!

Love, Anne

Friday, August 29, 2003 9:55 PM CDT

Hi everyone!

Thank you so much for all of the prayers and messages of support for all of us and especially for Benjamin! I won't keep you in suspense - his MRI came back clear!! We followed up his scan this morning with a physical at the clinic, and mercifully we didn't have to wait long at all for his results. His nurse practitioner, Suzanne, and Dr. Fangasaro raced each other down to our room to share the great news. Suzanne won!! She came in with a big grin on her face saying "it's good news!" She was followed by Dr. Fangasaro who also had a big smile, but she beat him to tell us the news.

We started the morning early since we had to be at Children's at 8:00am for his 9:00am scan, and Benjamin was pretty relaxed. He had a little bit of trouble going to bed last night because of nerves (didn't we all at our house last night), but after looking at some books he finally drifted off. He got a little nerved up when his nurse was ready to start the IV, but he found out that it really wasn't bad, and he was relieved that the IV for the contrast used in his MRI could also be used for the seditive and for his labs. The last MRI he had the absolute maximum dosage of the seditive, and it took nearly two full days before he was back to normal. Today his nurse started him at a very low dose - not even the usual minimum dose - and he said that was all he needed. He stayed still for all but the last scan, but we were told that they weren't going to need that last scan anyway. We had been extremely nervous up to that point, but when we heard that we thought that had to be a good sign. We figured that if they had seen anything that looked abnormal on the scans so far then they would have wanted pictures of him from every angle and they wouldn't have been willing to leave off one of the scans. That made the wait a little bit easier as we made our way over to the clinic. Benjamin was still pretty loopy - Brian carried him the whole time. He was pretty out of it when we saw all of our friends who took such good care of him all last year, but his Daddy and I got a chance to visit with them and hear more stories about the kids' camping trip last week.

As I said, we were given the great news about the scans before his physical was started so we were able to completely relax at that point. We went over a lot of things with both Dr. Fangasaro and Dr. Olshefski - we discussed his big drop in appetite and the falling, etc... and now we know that its not related to a tumor. They said that alot of the things we see in Benjamin are going to be difficult to read as to whether they are actually symptoms of a problem or just side effects of all he's been through. If he starts having extreme headaches or we just have a gut feeling that something is really off then they said that we can contact them at any time. We also went over the things they are going to be watching for down the line - like thyroid problems, his growth to fall off, etc..., but fortunately for most all of these problems there are ways to deal with them. For his thyroid - which will probably stop working in the next few years at some point - he will just have a pill to take every day that will resolve the situation. As for his growth falling off -something that I had really worried about - he will take growth hormones for a few years and that will bring him up to a full adult height. I had just been praying that he would at least get to my height, but Dr. O. said that he will be taller than that. I know that in the grand scheme of things these issues are NOT important - getting through these scans with clear results is really what matters - but sometimes its hard because even though he's done with treatment, things really aren't over for him when we're looking at all of these issues that will probably pop up down the line. We don't want him to feel self-conscious about anything. We just want him to have as normal a life as possible - a long, happy life!!

We also heard many more stories about our little guy and his fun times at camp! The doctors and nurses who had pictures of him from camp even said that they would send us the doubles! I thought that was so nice of them, and we can't wait to see the pictures of the great time he had.

As soon as we could get everything ready we packed up the car and headed for Ashtabula for a weekend of celebrating!! I had intended to update Benjamin's web page before we left, but we're having problems with our computer, so I wasn't able to get online. I'm updating from my parents' computer tonight. We do have one new picture up of Benjamin - for some reason the other two didn't make it up there, but we're still working on it. As we speak Benjamin is off to spend the night at his cousin, Ashley's house - he was sooo excited! He, Ashley and Aunt Kim went out for ice cream tonight and then they made plans for a sleep-over. He spent the whole evening playing with my parents and my aunt and uncle who drove out from MA for the big birthday party on Sunday - I can't believe this is the same kid who was so loopy from the seditive this morning. Tomorrow we're going over to play at Gramma and Papa Jones' house, and then I'm taking the boys to get their pictures taken - Benjamin's picture for his birthday and one of them both together. This birthday is so much happier an occasion than last year - I can't even believe a whole year has gone by. Last year I couldn't wait for the day to be over because I was just so sad and scared that this birthday would never come, but this year I feel like I'm floating. After being scared for so long, it is going to be so nice to just enjoy his day!

Thank you so much for all of the prayers, messages, and good thoughts you sent Benjamin's way! It is appreciated more than you could ever know! Please keep all these children in your prayers because cancer is really a tough thing to fight day after day. We know all to well how it feels to think that we're never going to get to that light at the end of the tunnel of treatment. Everyone told us that that day would eventually come and life would settle down again, and it did, but we never would have made it without so much support.

Love, Anne

Thursday, August 28, 2003 12:41 AM CDT

Hi everyone!

Just wanted to send out a quick update before tomorrow morning's MRI. We go in at 8:00am and his test is at 9:00am. After the MRI is over we'll be taking him to have something to eat before scooting up to the clinic for his physical and to hear the results of his scan. Benjamin knows he's going to have a small needle stick tomorrow because he heard me on the phone with the person from Children's who called to confirm everything for tomorrow morning. I wasn't talking about the needle stick, but he heard me talking about his appt. and when I got off the phone he said he's planning to just try to sleep through the scan on his own without the sleepy medicine. He said he was going to do this because he didn't want any shots. I decided to go ahead and tell him that in order to get a really good picture of his brain they have to put in a special medicine. I said that they have to start a tiny IV to do that, but that the good news is that if he decided he wanted to have sleepy medicine he could go ahead and have it without needing another shot. I also told him that since it was clinic day he would normally have blood draws as well, but since he doesn't have tubies anymore that would have meant another stick. Since they were already going to have to do a needle stick they are going to do the blood draws right then before his MRI, too, so no more shots - just the one little one when he first gets started. Then we sat together as I tried to explain what it might feel like. I told him to use his fingernails and give his skin a little pinch. I told him that when he feels the pinch start to hurt a little bit that that is what it will probably feel like. He had a grin on his face as he said - "that's not too bad!" I told him that if he hadn't lost the grin on his face it shouldn't be too bad at all. I told him that he can squeeze or pinch my hand tomorrow when they start the IV - of course, he picked the pinching - haha! Anyway, he knows what's coming tomorrow and he seems to be pretty much at ease about it. He keeps asking if we can just get it over with today - we're heading up to Children's in about half an hour for PT and OT, but I had to explain that its not our turn for the MRI yet. At least by breakfast time tomorrow it will all be over.

We're trying not to be too overwhelmed by the worrying. Benjamin still is not eating well at all - he eats about half of what the baby eats in a day in total. It bothers Brian and me because we don't understand it, but my friend Ivy told me that sometimes it takes many, many months before kids can return to eating somewhat normally after all that chemo. That did make me feel better hearing that. He's been falling alot lately too which concerns us, but he's also much more active again - he's not spending his days laying on the couch anymore. He's also going to be more likely to lose his balance just as a side effect of all he's been through. It's so hard to tell the difference between what is normal and what's not sometimes. Tomorrow will give us the answers, though, and as long as everything is good we will know for the future not to put too much stock into some of these things that have worried us lately. Then we will know these things are just side effects of all he's been through.

Yesterday we took Benjamin to the barber shop for a real haircut - his first time out since getting his hair back. I've been cutting it myself with the clippers, but I wasn't sure how to get his hair to fade properly, and I wasn't happy with how it was turning out. Our friends around the corner, the Thomas', whose son Ben went through chemo and radiation as well take their son to this barber, and they told me this barber can do a really nice job working around the spot where the hair is slow to come back in from radiation. Benjamin's new haircut is great!! We all love it - especially him. Brian took some new pictures last night of both the boys and was able to get them downloaded on the computer, but he has to shrink the pictures so he can put them on the page. They came out so cute, though, so I hope we can get them posted soon!

Well, I need to get the guys ready to be off to Children's now, but I will update as soon as I can sometime tomorrow with the results of Benjamin's scan. Please keep him in your prayers tonight and tomorrow - thank you so much!

Love, Anne

Monday, August 25, 2003 2:36 PM CDT

Hi everyone!

We hope you all had a good weekend! We had a fun weekend catching up with my parents who came down for a visit. We havn't seen them since July 4th so we were really looking forward to it.

Benjamin had his last T-ball game on Sat., and it was one of his best games ever! He was still so tired, though, and it showed when he was out in the field. Plus it was very warm that day, so I think it was a combination of being tired, hot and bored in the field. He had two great stops, though, and he threw a kid out at first!! That is the first time he has ever done that in a game!! He had good hits, too, but unfortunately his last time up to bat he was the one thrown out at first. He was so tired - I think he was a little bit glad to have the chance to go back and sit down.

All during the first inning he kept his eye out for his grandparents, and he was so happy to see them arrive. Benjamin was excited for the chance to show off for his grandparents, too. After the game we headed home to cool off and spend the rest of the weekend visiting. We also had a belated birthday party for my Dad whose birthday was last month. We're really looking forward to seeing everyone on both sides of the family this coming weekend and celebrating more birthdays - my sister's is tomorrow, Aunt Adria's was just a couple weeks ago, Benjamin's is on Labor Day, and Uncle Tim's is the day after - our families seem to love the end of the summer birthdays - haha! Now we can add new baby cousin, Ashton, to the Aug. birthdays, too! Benjamin (and all of us) is so excited to meet his new cousin and to play with his cousin, Ashley. We're hoping for great news on Friday at Benjamin's MRI to add to excitement!

Today Benjamin received a wonderful surprise in the mail. Last month he was invited by the Make-A-Wish Organization to throw out the first pitch at a Columbus Clippers game - something he still hasn't gotten over. This morning he received a specially made Louisville Slugger baseball bat from Make-A-Wish and Baseball USA (they sponsored all the activities at the game that night). His name is even engraved on the bat! Benjamin was so thrilled to have this bat - he said he going to save it forever because it is so special. This present came as a total surprise - we had no idea that anything more from that night was planned for him. We are so appreciative of everything these two organizations have done to make Benjamin feel so special! I know he is going to treasure that bat!

Well, the plans for the rest of this week include PT on Tues. and Thurs., and Benjamin's last tutoring session with Mrs. Brinda on Wed. Boy will that be a sad day when he's all done working with Mrs. Brinda. He has become very attached to her, and we've all looked forward to her visits! We are all going to miss seeing her so regularly, but we will just have to make plans to have other visits. Then Friday is the big day - MRI day. We have to be there at 8:00am, and his scan is at 9:00am. He doesn't know yet that he will have to have a needle stick because they have to inject contrast for the MRI, and he also has to have his blood drawn to check his counts. He doesn't like to be told about things like this until the morning they happen, so unfortunately we'll have to share this bit of info on the way up to Children's. He has always been sedated for his MRI's in the past, but he says he is going to try going without this time. However, at this point he is only saying he wants to do this because he thinks this will be the way to avoid a needle stick - he knows that if he's sedated it has to be by injection, and he no longer has the tubies to take the sticks for him. When the nurses first talked with him about going without sedation we didn't know that he would have to be injected with the contrast for his scan. Now we do know, though, and I don't want to lie to him, so if he asks about the whole thing we will have to tell him. He hasn't asked about it at all since then so we havn't volunteered the info. He gets extremely nervous about things like needle sticks - he makes himself sick to his stomach - so that's why we've let the subject drop for now. We've always told him the truth about anything he asks, though, so he would know he could trust us, so we will have to say something if he asks. After his MRI is completed we have his next clinic appt. - weight, height, temp., physical, etc... - and hopefully we'll hear the news we want to hear and then we can travel on our way to Ashtabula for some fun! Brian will have the day off so at least we can do that horrible waiting together. We have promised to always be there together on MRI days because on the day Benjamin was diagnosed we both had to hear the news alone. Brian had taken Benjamin in to the ER overnight and I had stayed home because Zachary was just a newborn - three weeks old. We knew that something was wrong but we didn't truly expect to hear news like that, and I can't speak for Brian, but being alone to hear something horrifying like that was something I will never forget. We're praying to get back excellent results, but either way we'll all be there together. Going into this week we are both on pins and needles. It's really hard not to stress out about it all, but it's important that we at least keep up a casual front, at least in front of Benjamin. Brian and I both analyze any little thing that seems out of the norm for Benjamin and question whether its a sign of something wrong or whether its something perfectly innocent. What makes it harder is that some of the signs of recurrence are similar to some of the side effects of what Benjamin has been through. His balance is unsteady at times, he forgets things sometimes (beyond the usual 6 year old types of forgetfullness - short-term memory kinds of things which thankfully don't happen that often), his vision changes, being more tired than usual, etc...all things that could mean absolutely nothing or everything. You can bet that Friday night we will all sleep peacefully if all goes well!!

Thank you for continuing to check in on Benjamin and for remembering him in your prayers!

Love, Anne

Thursday, August 21, 2003 2:38 PM CDT

Hi everyone!

I can't believe how quickly the summer is winding down - next week is Benjamin's last week of summer vacation before he starts school on Sept. 2nd. This Sat. is his last T-ball game at the YMCA - he said he's kind of disappointed about that, but he's also getting kind of tired and feels ready to be done. My parents are coming down this weekend to watch him play ball so he's very excited about that.

Benjamin has been home from camp since Sunday, but he's still really trying to catch up on his rest. Every morning when he wakes up he's still tired, and very often he falls back to sleep for awhile. Tuesday just about wiped him out - that day he had tutoring, PT, and his last T-ball practice. Tuesdays have kind of been his marathon days, but that's all done now. Normally he likes to try to run as much as he can when he does his work on the treadmill at Children's, but this week he was just too tired - he actually asked if he could stop walking a bit early, too. He said "I guess I'm a lazy-bones today," but we told him that wasn't true at all, he's just extra tired right now from all of his big activities from the weekend before. He slept a little bit on the way home from Children's, and we told him that if he didn't feel up to it he didn't have to go to practice that night. Benjamin wasn't going to hear of that, though, and he went to practice and even tried to run when the kids did their warm-ups. We had told him that if really wanted to go he could, but for him not to worry about the running at warm-ups. Bless his little heart, though, he gave it his best effort.

When he got up this morning he still felt tired and the last couple of days he's had little aches and pains, so I cancelled his PT and OT for today and we've just taken it easy all day. We'll do the same for tomorrow and hopefully he will feel full of energy for his game on Sat. and visiting with his grandparents.

Benjamin still has a new funny story from camp almost every day, and we're still hearing very nice compliments about our little guy. On Tues. we saw Benjamin's nurse practitioner, Suzanne, at Children's when we were there for PT, and she was telling me about how the nurses who dispensed the medications for the kids at camp got a kick out of Benjamin. Suzanne said that he knew on his own every time he needed one of his medications, and he came in and asked the nurses for what he needed - "I need my nexium pill, please. I need my reglan, please." I told her that he's the same way at home. Sometimes Mommy wakes up a little bit fuzzy in the mornings, and I'll set out his breakfast without giving him his medicine. He ALWAYS remembers and says "wait, I can't eat yet." It is amazing how quickly kids learn what makes them feel better. During treatment he would tell us what his problem was and what medicine he thought he needed. He'd say the name of the medication, too, like "I need zofran (for nausea)" or morphine for pain, etc... he had a whole laundry list of medications at one time (which he has thankfully been weaned off of almost all of them), and he always knew what medicine took care of what problem. Of course, we couldn't just pass out whatever he asked for without checking first, but he was almost always right about what he needed.

That same day I received a call from one of Benjamin's counselors from camp. He was a very nice man who told me that he's never called a parent before, but he felt that in this case he had to so he could tell us how special he thought Benjamin was. He had so many nice things to say about Benjamin, and I so appreciated his call. When I hung up the phone I felt so thankful for Benjamin and for the great little guy that he is. I am continually amazed that after all of the horrible things that happened to him while going through treatment for cancer he was able to come out of the whole thing with such a sunny, happy-go-lucky attitude and outlook on life. I know that part of the reason is because of the personality he already had before all of this happened, and I think the other reason is because of all the love he has been given from everyone - family, friends, people at the hospital (actually both Children's Hospital and OSU - The James Cancer Hospital) and clinic who cared for him and became friends, as well, and the people we've never even met who have rallied around him and our family. I don't think any family can get through something like this without support from everyone around them. We told Benjamin that we were so proud of him, and he said (kind of sheepishly)"I guess I'm pretty proud of me, too!"

Other than that, not too much is going on here. We're just finishing up another week, and on the one hand not looking forward to next week (because of the next MRI), but also very excited for it to get here (its a mixed bag, I know)because we will be having a big family celebration for Benjamin's 7th birthday. We just have to get past next Friday and then we can let the excitement take over!! I'm looking into whether or not Benjamin is going to need another eye exam sooner rather than later because of how he keeps closing his right eye for close-up work. He seems to be doing it more than he used to, and now I've noticed him doing it when he's playing, too. If he and Zachary are playing right up next to each other, Benjamin closes one eye when he looks at his brother or whatever they are playing with. He's only doing this for close-up activities, so I wonder if he needs glasses? He had an eye exam after he finished chemo and they were going to wait to see him again for about 6 months, but I wonder if the problem is getting worse and will affect his schoolwork - we don't want that to happen. It is hard to get a little kid to explain what's wrong with what they're seeing, too. I ask him if things look fuzzy or not very clear, but I don't think he understands. He just says that things look better when he closes one eye. We'll see what they say about it.

Well, that's about all the news from here. We're just catching up on rest. Thank you for keeping Benjamin, and all the other kids, in your prayers!

Love, Anne

Monday, August 18, 2003 10:20 AM CDT

Hi everyone!

First of all, we are so excited to welcome a new little Jones boy to our family! Chris (Brian's brother) and Adria had their little boy, Ashton, early early Sat. morning. We can't wait to go up to Ashtabula at the end of the month to meet our new little cousin/nephew!!

My little camper is finally home! It was a long, too quiet weekend here without him, but he came home yesterday afternoon. We arrived early to pick him up, and we ran into Linda (one of the nurses from the Hem/Onc Clinic who took such great care of Benjamin every Friday for a year when we went in for his weekly appts) and her husband Dennis. Dennis was one of Benjamin's camp counselors for his cabin, and he had such nice things to tell us about Benjamin. He told us that all of the kids are special, but there is something extra special about Benjamin - his great big smile, how he looked out for the other kids, and that he seems much older than a six year old. We told him that we've always joked from the time he was a newborn still in the hospital that Benjamin has always been a little old soul. He told us that Benjamin had a wonderful time and was a very good little boy. We were so happy to hear such great things about him and to know that he had a great camping experience. He told us later that he really liked Dennis for his counselor and that he had a lot of fun with him.

The bus was a little bit late getting back - which we kind of figured might happen since yesterday was the last day for the Ohio State Fair and traffic was much busier than usual for a Sunday afternoon. When the bus got back and Benjamin came off the bus he looked wiped out, but he had a big grin on his face! It was so great to hold him and have him back!! He was so happy and had lots of stories to tell us. On the way back to the car he told us all about the cabin he stayed in and what the campgrounds were like. We asked him how he did taking a shower on his own (we've had to help him this past year because of his tubies, and now he's learning to take them on his own). He said "well, I took my showers, but I didn't use soap because I couldn't find mine." We cracked up because he had made such a big deal about the "cool kid's soap" we had found - it smells like berries and its wrapped in netting so its less slippery for kids to hang on to. Then he said "I also didn't brush my teeth because I didn't find my toothbrush until this morning." He had a huge grin on his face as he told us all of this - typical little boy - haha! I can't imagine how quickly he "looked" for these items since they were right on top in his bag - haha! Then (when I stopped laughing) I asked him if he had at least changed his underwear while he was gone, and he got a funny look on his face. Then he smiled, peeked down the front of his shorts and announced "nope, I did change them because now I've got on my Rocket Power ones!" That kid had us cracking up, and we hadn't even made it back to the car yet. He also got the biggest kick out of telling us about one of the kids who had forgotten to pack underwear - he couldn't stop giggling about that one.

He was so proud of himself because he said that he ate well the whole time he was gone - his appetite has been so up and down for the past couple of months. He also told us about the awards he had won. Before we left one of his counselors made sure we knew that Benjamin had won an award for archery (or bowing and arrowing as Benjamin prefers to call it), and he won Best Camper in his group. She made sure we knew because poor Benjamin thought he had lost his awards. She had very kindly searched the whole bus, up and down, after all the kids had got off the bus, but she hadn't been able to find them. We later found the awards tucked into his luggage, though. She also told us that he is quite a dancer - which brings us to our next topic... We asked Benjamin if he had danced with any girls because he was totally against this idea before he left. He got a silly look on his face and said "well, one girl." He told us that she was older, too. He said that one of the counselors had asked him to dance, and when we asked what his response was, he said he told her "I don't care." He's so smooth - haha! I asked him what kind of music they played at the dance - if it was all country/western or a mix, and he said "they played all kinds, but then they played Shrek (the movie soundtrack) and I was down with that!" Brian and I were about rolling - he "was down with that?!" That's a new expression from him! He also said that his favorites activities from the weekend were the dance, "bowing and arrowing," making crafts - he made a tie-dyed bandana, and boating - he went on a paddle boat. All in all, he had the best time and the whole experience was everything we had hoped it would be for him!! He came home so happy, and we so appreciate everything all the nurses, doctors, hospital personnel and their spouses did to make such a memorable, fun weekend for all these kids. Benjamin's nurse practitioner, Suzanne, even called us on Sat. afternoon when she got home after being up at camp for the day to tell us that she'd seen Benjamin and he was having a great time. She knew that we were a little bit nervous sending him off on his first camping experience. Poor Suzanne probably thought I was crazy, though, because as soon as I saw her name on our caller id I panicked and thought something had happened to Benjamin. Brian had teased me all weekend because I wouldn't leave the house because I wanted to be home in case Benjamin called and wanted to come home. Finally, late Sat. afternoon we went out shopping for awhile, and when we got home Brian joked that I better run in and check the machine because Benjamin might have fallen off a horse or something and his Mommy wasn't home to get the call - he's not very funny, is he - haha! So when Suzanne called I jumped on the phone in a second, ready to hear that we had to meet them at the nearest hospital in Bellfountaine. What a relief to hear that he was having a ball! I thought that was so nice of her to give us a call to reassure us, though!

Today Benjamin slept in until 10:30 am, and he's doing just great. We're just getting settled back in and starting off on a new week. He's got tutoring and PT this week, and next week is his next MRI. I'm trying so hard not to worry yet, but we're more worried about these MRI's from here on out. His last MRI was just after finishing chemo, so we knew we had that to fall back on. Now its all on his own, no more chemo to fight with, and that makes us worry more for these MRI's every three months. Medulloblastoma is a very aggressive type of brain tumor, and we know that Benjamin's tumor was even moreso because of the small amount of spread. We were told that some children are diagnosed with medulloblastoma after months and months of symptoms, and when it is found the tumor is intact with no spread, while Benjamin only ( and I say "only" relatively) had symptoms for about three months before he was diagnosed, but his had already spread. We just have to believe that the super high intensity chemo and radiation wiped it all out. We want so desperately to have two huge reasons to celebrate Benjamin's birthday this Labor Day weekend - we want good scans and we want to celebrate that he's turning seven!! Last year for his sixth birthday I just couldn't wait for the day to be over - we were in such a state of limbo at that time. Radiation was done, but we didn't know yet if it had destroyed the two nodules that couldn't be surgically removed and we knew that it was critical that the radiation had worked. Benjamin was tired and sick - he ate a piece of his birthday cake and then threw up - what kind of birthday is that? When the family sang Happy Birthday to him I could only mouth the words because I was so afraid if I tried to make a sound that I would start to cry. This year I want to make it his best birthday ever and I want to be able to sing out loud to him - I can't promise that I'll sound good or anything, but I want to just shout it out - haha! Please, please, please pray as hard as you can for Benjamin's scans to have excellent results!! Thank you so much for remembering him, and all of his little friends, in your prayers. We appreciate that so much!

Love, Anne

Friday, August 15, 2003 12:25 AM CDT

Hi everyone!

Well, Benjamin is off on his first camping trip with the kids from Children's Hospital. He was about beside himself with excitement!! We were up early doing last minute checks on Benjamin's luggage and talking about his trip. He said he was a little bit nervous, but he was more excited than anything else. He seemed a little nervous up there, too, because he didn't recognize any of the other kids, but when he saw his buddy Ben Thomas arrive he was set. Benjamin's nurse practitioner, Suzanne, had suggested that Benjamin bring a can of silly-string (Brian bought 4 cans for Benjamin, Ben, and any other little buddies he finds), so he was excited to plan some tricks with Ben.

I definitely didn't feel the love from Benjamin as he got ready to board his bus - haha! When they called for Benjamin's group to line up and find a buddy to hold hands with Benjamin took off for the front of the line. I had to call him back and ask for a hug and a kiss. He gave me a quick hug and kiss and started running back to the line before I could finish giving him his "going away speech" ... be good, listen to your camp counselor, etc..., and I had to call him back to me again. He came over and said very emphatically "Bye, Mom!!" - like he meant "you're holding me up here." We were cracking up at that!! When he got back to the front of the line with his partner he never once looked back. They called the group to walk out to board the bus, and off he went. I was a little slower getting out because I had the stroller for the baby and there were so many people milling around. I could catch a glimpse of him here and there, though, and he never turned around - for all he knows I could have left right then - haha! By the time I made it outside he had already boarded the bus, and Ben's Mom and I had to laugh because he was gone by the time I got out there. The windows on the bus were tinted so I had no idea where he was even sitting, but thank goodness I had noticed that his partner was wearing a cowboy hat. I could see the outline of the hat through one of the windows and a little skinny arm and hand waving next to that kid. I'm guessing that was my child - I waved to that kid anyway thinking he was mine. When I got home I called Brian to tell him about Benjamin's send-off and we had a good laugh. Last night Benjamin had asked what I was going to do when the bus left - meaning, would I miss him, and I teased him that I was going to run alongside the bus with Zachary in the stroller, blowing kisses at the bus and yelling "I love you, Benjamin!!" He grinned, but quickly said "don't you dare!!" I hope all of this is a good sign for when we send him back to school this year. I was worried that it might be hard for him since he was so used to be at home with me- I guess we don't have to worry about that now - haha!

I'm so glad that he was happy to go on his trip, and I'm hoping he has a great time, but it is definitely weird at home - so quiet!! It will be nice to have some one-on-one time with Zachary, too, but I do miss Benjamin already. Zachary came home and pointed up at a picture of his brother and said "Ben!!" I asked him if he loves Ben-Ben, and he shook his yes many times. He doesn't get it to know where his brother is, but he misses him, too.

We had thought there was a visiting time tomorrow afternoon for the parents, but we found out today that that isn't so. I asked Benjamin if that was going to bother him, and he said no. We had cancelled our reservations for tonight already, but we had planned to go up tomorrow, and if he wanted us to stay at the hotel we were going to. I told him that since there wasn't a visiting time we would just cancel tomorrow's reservation too and his response was "ok, I don't care," and back to playing. Hopefully he will be all set tonight - if he doesn't have a problem tonight, then he should be all set for Sat. night. When he spends the night at his grandparents' house he's usually fine, but every once and a while we get a call late at night that he wants to come home. He's fine during the day, but bedtime is when he sometimes changes his mind. His confidence seems to be building more and more all the time, though, so hopefully tonight he will be having so much fun with his friends that he won't give it a second thought.

I will update more when he gets home - I'm sure we should have some great stories from this trip!!

Love, Anne

Wednesday, August 13, 2003 2:34 PM CDT

Hi everyone!

Benjamin has had a busy week so far, and the countdown is on until he climbs on the bus heading for Camp Cotubic on Friday morning.

Benjamin had PT yesterday with Kathy, and boy did he work! He got on the treadmill to do his walking, and he said that he wanted to run. So Kathy increased the speed, but that wasn't fast enough for Benjamin. He had her increase the speed some more, and those little legs of his were moving faster than I've ever seen them go. I've said before that even before Benjamin got sick he was never going to be a track star. He would try so hard, pump his arms as fast as he could, but his legs were moving in slow motion. Brian used to always kid around that he was going to have to teach that boy how to run someday. Since he's been working with Kathy, though, his form has improved so much, and now he's actually got some speed!! He looked so cute on the treadmill because Kathy was holding on to him by the back of his shorts as he ran along. If he started to lose his balance she was able to keep him upright by how she was holding him, but even if he started to lean he still kept his legs moving. I couldn't help but giggle, and when he asked why I told him he was doing a great job, but the way she was holding him as he ran along made him look like a puppet or a marionette. Then he started giggling and trying to run - it was such a cute sight!!

Today was Take Your Child to Work Day at Brian's office downtown, and Benjamin went to bed determined to be up at 5:30am with his Daddy. Brian said that as soon as he walked in Benjamin's room this morning Benjamin popped right up in bed and said he was ready. I had put out clothes for him last night so Benjamin got himself ready while Brian got ready, and they were out the door very early this morning. Brian just recently changed his work hours to 7:00am to 3:30pm, so that meant hauling themselves out pretty early. We were lucky that Brian's office is so flexible with schedules because while Benjamin was in treatment Brian was able to go in later - like at 8:30 or 9:00am, and then he could help me get both of the boys going in the morning. I really needed that help because for so long Benjamin was sick in the mornings when he first got up, and the first half hour of day for him was usually spent taking care of this need. Clinic days were especially hard because we had to get through that first rough half hour, get both boys and ourselves ready, and be up to the hospital anywhere between 8:30 - 9:30 am depending on our appt. time. Well, anyway, now that things have settled down Brian was able to switch back to his earlier schedule which he likes so much better (even though its tough when the alarm goes off at 5:30am) because then he's home and can spend the rest of the afternoon and evening with us. Benjamin had a great time at Daddy's office and they enjoyed the different activities that had been planned for the children. I think the early hour caught up with Benjamin, though, because I got a call to come pick him up early, and he came home at 1:30pm - he almost made it through the whole workday, though. He and his Daddy had a nice day to spend together and they also went out to lunch downtown. It really was strange not to have Benjamin here this morning!! Every morning he wakes up early and sneaks in our room, climbs into bed and falls back to sleep. I wake up later to find him snuggled right in, and its a really sweet way to start our days - so much nicer than all last year when I'd hear him start to move around and know that one of us had better get ready to run because within seconds of waking up we'd know it was just a matter of time before he started getting sick.

Tomorrow its back to Children's for more PT and then he has OT as well. On Friday we will be back up there early so I can get him registered for camp and then he boards the bus. He's so excited! We had planned to stay in the same town as the campgrounds (about an hour from here), but then last night and this morning Benjamin said that he really wanted us to stay home and let him do this on his own. We're kind of torn about what to do now because we'd like to let him have his independence (and we know he's not far away if he really wanted us to get there), we know already that the baby doesn't travel well, and we're not really sure what to do in the town where the campgrounds are located. On the other hand, we'd like to be right there for him in case he does need us - he's never done anything like this before. There is supposed to be a parents' visiting time on Sat. so we've talked about staying here at home and going up for the day on Sat., and we're also thinking about having Brian go up for the weekend to stay in case B gets scared at night, that way the baby won't have to travel. Brian said that he would just bring his golf clubs and spend his afternoons golfing - haha! I have a feeling we will end up going and then being told by Benjamin to stay away - haha! We were told in no uncertain terms that we were not to show up at the camp at all, especially for the dance on Sat. night - which is where I'd want to be a fly on the wall most of all!! We asked him what he would do if a little girl asked him to dance and he said (after he got finished rolling his eyes) that he would just say "no, thank you." I told him that while that sounds very polite, he might still hurt someones' feelings. So his back up plan is to bring along the fake wax teeth (they're huge and they stick out of his mouth - very comical looking!!) his Papa Jones gave him and use the teeth to ward off any girls. I had to laugh!! I told him that I was sorry but that even with the fake teeth he was still a cutie - more eye-rolling from Benjamin - haha! I'll update more with all of his camp stories.

Thanks for all of your kindness and prayers!

Love, Anne

Sunday, August 10, 2003 9:45 AM CDT

Hi everyone!

We hope everyone is enjoying their weekend! Benjamin has had a busy one so far, and he slept in this morning to catch up on his ZZZZ's. On Friday night he went to a drive-in movie for the first time. Brian took him to see Spy Kids 3-D, and he said that even though they tell you when to put on the 3-D glasses, Benjamin insisted on wearing his throughout the whole show. He was so excited to go out with his Daddy, wearing his jammies (Benjamin, not Daddy - haha!)and bringing his pillow, blanket and snacks. Zachary and I stayed home since Zachary is now in a climbing phase and probably wouldn't appreciate being enclosed in the car for a few hours with us. I don't think I would have appreciated being enclosed with Zachary the climbing monkey either.

Sat. morning we got ready for Benjamin's T-ball team pictures and game. Brian bought little baseball pants for him so he HAD to wear those for his pictures - they looked so cute on him. He came down the stairs very slowly saying "I think there's a problem with these pants." The waist was so big for him that the pants were sliding down. Once the pants were taken care of and he had his jersey on he was set to go, and he looked so handsome!! Brian ordered his team picture with a 5x7 of B. and he also got a little button for me and some baseball cards of himself for Benjamin to give to family (he thinks those should be pretty cool!)

We were so happy that Benjamin's physical therapist, Kathy, was able to come to Benjamin's game, and she brought her children Austin - who is Benjamin's age, and Jessica - who is Zachary's age. The two boys became fast friends after Benjamin's game (which was called early because of the threat of a storm) - they played catch and ran around together. The fun continued when they invited us to join them for lunch at Chuck-E-Cheese. Benjamin and Austin played all the games and shared a pizza. After lunch they needed to do back-to-school shopping, but the boys didn't want to separate yet. So we went over to Kohl's as well to pick something up, and then we had Benjamin say good-bye so they would be able to get their shopping done. They were so funny - they wanted to go everywhere together and ride in the same car together. We so appreciated that they came out for the game and fun afterwards, and it was so great to see the boys become buddies. It makes Brian and me so happy to see him having fun with other kids!!

After that we came home and relaxed the rest of the day. Benjamin, Zachary and I took Emma for a little walk, and Brian and I did some work around the house that has been neglected lately. With Zachary teething and becoming a permanent fixture attached to my side, the dishes and laundry had started to pile up. We got caught up on some things and now the house doesn't look quite so much like a disaster zone. We've got some work to do in the back yard, but Brian saw a small snake out back last night so now no one wants to go out there - haha!! That's the first time we've ever seen one here, and it wasn't a welcome sight! No one wanted to take Emma out last night, and all of her trips out were quick ones, especially in the dark - haha!

Well, this week should be a fun one for Benjamin. On Wed. is Take Your Child to Work Day at Brian's office so Benjamin is all geared up for that. Before he got sick he loved to go visit his Daddy's office, and he always insisted on getting all dressed up in dress pants, dress shirt and tie - the works!! Once during chemo he wanted to go see his Daddy so he put on his Easter outfit (he looked so sweet), a baseball cap because he didn't have his hair then, and he wore his fuzzy lion back-pack for his briefcase. He takes this stuff very seriously and he wants to look just like his Daddy.

On Fri. morning I have to bring him to Children's early so we can get him all set to board the bus to Camp Cotubic!! This year's theme is Country and Western so we're on the lookout for some kind of western-type outfit because they have a big dance on Sat. night. I wish I could be a fly on the wall for that night!! There will be fishing, swimming, horseback riding, among other activities for the kids,and he's really looking forward to seeing his buddies. Brian and I are at ease about sending him since this camp is run completely by doctors, nurses and spouses from Children's Hospital. We hope he doesn't have any problems, but what better place to be if something pops up than at a campground filled with medical personnel?! These are all the same people who took such great care of him this past year so he feels very comfortable and safe with them, and Brian and I feel good about it too. I'm sure he will come back with all kinds of interesting stories!!

Well, thanks again for looking in on our little guy!

Love, Anne

Friday, August 8, 2003 1:20 PM CDT

Hi everyone!

Well, we're at the end of another week, and Benjamin had a good one. Unfortunately his little brother, Zachary, who is teething right now, didn't have as nice a week. He's pretty crabby and extremely clingy. He's also really into climbing right now - he figured out how to climb out of his playpen my first night on my own with him in Ashtabula last week. That made things pretty interesting for taking showers, etc... I had to bring in his car seat and buckle him in whenever I needed to do anything to take care of the dog, take a shower, or do anything where I couldn't keep my eyes on his 100% of the time. Now he's climbing all over the furniture, and he of course has no fear. Meanwhile, my heart stops several times a day as he finds something new to get involved in. Last night Brian picked up a little climbing/sliding toy that is small enough to be in the house, and that has helped considerably today. He and his brother take turns climbing and sliding - they're having a ball in it. Its Clifford's Doghouse (from the cartoon Clifford the Big Red Dog) so they can also climb under the slide in the dog house.

Benjamin had a good week with his tutoring and with his PT. Slowly but surely he's making progress with his therapy, but we're still not sure if he will be able to participate in gym class with the rest of the first graders. He may have to do some kind of modified phys.ed. or meet with a physical therapist at that time. I hate for him to miss out on being with his class, but if its better for keeping him safe than so be it. There are much worse things to deal with. His balance seems to be improving - he can stand on one foot and balance for a little bit longer now before starting to lean. He's also doing better at walking down the stairs. He still has a tendency to lean over because he doesn't have as much range in one foot, but its getting better, and some of it may just be due to habit. He's excited, too, because his therapist, Kathy, is going to try to come to his T-ball game tomorrow morning.

Emma's doing really well with her potty-training - she barks to be let out and once she's out there she usually goes right away. I hope I don't jinx her, but she hasn't had an accident in days now!! Benjamin likes taking her for little walks, and he laughs because she poops out very quickly! She runs like a little maniac for a good distance, and then she plops down in someone's front yard to rest a bit. She also tries to climb into the basket of Zachary's stroller - smart dog!! Benjamin always laughs when she does this and says "she's a lazy dog!"

He's getting very excited for his birthday in three weeks and for school which starts after Labor Day. We went out the other night so he could pick out his school supplies and his lunch box - the Hulk! We also did most of his school clothes shopping which he didn't find as exciting - haha! I can't believe that this year we're getting him ready to go off to school, and last year at this time we were getting him ready for super high doses of chemo to start. Sometimes it feels like it all never happened. He's more and more back to his old self all the time. It makes going into this next MRI (just three days before his birthday) a little scarier. It seems like it would be too cruel to just get him back if something were to pop up again. These next few MRI's make us a little more nervous, too, because he's been off chemo for a few months now. For his last MRI he still had the benefit of having just finished chemo. We just want to get in there, run the MRI, pray for good news, and CELEBRATE his 7th birthday!!! We'll just take it as it comes, and try not to get ahead of ourselves. Please keep Benjamin in your prayers as he gets closer to this next MRI. We appreciate it so much!!

That's about all the news from here. We hope everyone is enjoying the summer! Thanks for all your kindness!

Love, Anne

Tuesday, August 5, 2003 11:03 AM CDT

Hi everyone!

We are all back home now and get settled back in after being up in Ashtabula for a great visit. The boys are settling back in much easier this time than they did after our last trip. Zachary doesn't travel well - doesn't eat, sleep, etc... very well, but he's getting adjusted to being back home, and Benjamin went to bed at a good time last night and slept the clock around.

We're off to the start of another week - tutoring today, along with PT and maybe T-ball practice if the weather holds out. Then on Thurs. he has PT/OT and more tutoring. We did alot of work while he was off this past week, and I was so surprised to see how well Benjamin is spelling. Mrs. Brinda had told me that he could spell almost any three letter word and he was starting on four letter words (not the bad kind - haha!). He had little worksheets to practice with over his break, and he is doing very well with the four letter words now, too! His writing has improved so much, too. Alot of people told me that the further he gets away from chemo his writing would get better, and they were right. The only thing that puzzles me is that sometimes he writes letter or numbers upside down, but they are perfectly formed!! He can write a number or letter, very quickly - without having to put thought into how he's doing it, but it is completely inverted or upside down. I would have to sit and really concentrate to make a letter or number that way. It makes me wonder if this is something typical that kids his age sometimes will do (other people have told me that before) or if his brain is seeing letters and numbers in this way - upside down or inverted. He will be going back in for his next check-up in just a few weeks, so that is something we will have to ask about. He will have his next MRI at that time, too.

His appetite is definitely on this week! He's been eating well at every meal, and Brian said that he ate well last week, too, when they were here at home and I was in Ashtabula with the baby. He's only been sick once in the last two months, too, and that time (last week) was really our fault because we both thought the other one had given him the medicine he takes before eating, and actually neither one of us had. We have never done that before, and we'll definitely have to be more careful to check with each other. Brian spoke with Suzanne, Benjamin's nurse practitioner, and she said that actually we can try to start weaning him from these two medicines he takes for reflux. One of the medicines he used to need 4 times a day and now he only takes it 3 times a day, so that's progress!!

Other than that, not too much is new. I've got his cake ordered for when we celebrate his birthday over Labor Day weekend up in Ashtabula. He decided definitely on a SpongeBob party, so the order is in. His early birthday present, Emma the puppy, is actually getting closer to being potty-trained. I kept her in Ashtabula with me the week I stayed up there, and she really pushed me to my limits - haha! Anyone who has tried to train a puppy knows - running in the house, out of the house, in the house, out of the house, at all hours and at any sign of a bark or yelp. It seems to have paid off, though, because she only had one accident yesterday, and none so far today. She's doing a pretty good job of barking to let me know that she needs to go out. I took her to the vet in Ashtabula for a check-up and puppy shot, and the vet there told me how he trains his dogs and that it takes a little over a week to get success. He was certainly right because in just about a week's time we have seem 100% improvement! Yea Emma!!

Thanks for keeping Benjamin and all his little buddies in your prayers!

Love, Anne

Friday, August 1, 2003 7:58 PM CDT

Hi everyone!

I'm so sorry to have to write that the sweet little boy that we've asked you to pray for, Luke Gabriel Ervin, died yesterday morning at home with his family. His web page is listed below as a link from Benjamin's page if anyone would like to leave a message of support for his parents, Ivy and Monte, and his big sister Joscelyn.

There is not too much new to write about since we havn't been home this past week. Well, Benjamin and his Daddy came home part way through the week so Benjamin could go to his T-ball game tomorrow and be in the team pictures. Zachary and I are still in Ashtabula staying with our family and relatives who are in town for a visit for my Gram's birthday. Benjamin has had great fun staying at different friends' houses and playing with all of his buddies. He even had his first sleep-over at a friend's house this week! I have missed him so much - I've never been away from him like this before. I suppose its good practice, though, for when he goes to Hem/Onc camp in a few weeks. Zachary and I have really enjoyed our visit with family and friends up here, the weather has been great and the Lake is nice and warm (Zachary is definitely our little beach baby!). I will update more when we get back home. Thanks for checking in!

Love, Anne

Sunday, July 27, 2003 10:31 PM CDT

Hi everyone!

Please say a prayer for Luke Ervin and his family. He is experiencing quite a bit of pain, and this has been such an emotional struggle for his family. I have added his web page to the links at the bottom of Benjamin's web page.

I'm writing tonight's update from my parents' house in Ashtabula. We have enjoyed a great weekend so far, and we're looking forward to more fun this week with the arrival of family coming in to visit and celebrate our grandma's birthday.

We spent the day at Brian's parents house today, and the kids, Gramma Jones and I went down to the beach. The kids had so much fun building sand castles, digging in the sand and running in and out of the water. There is something so peaceful and relaxing about being near the water! Benjamin and his cousin, Ashley, spent a lot of time working on their castles and Zachary spent the majority of his time playing in the waves. That baby loves the beach and the pool, but he screams his head off the second he's put in the bathtub. Being out in that fresh air certainly tired the boys out, though, they were both ready to drop into bed tonight.

Benjamin did eat better today, so that was a big relief. With his next set of scans coming up soon (Aug. 29th) we tend to read a little more into anything we think might be some kind of a symptom. At the time of his last scans he had just finished chemo, so we felt pretty good going into those scans. Now that a few months have gone by and he's been off treatment we don't feel quite the same since we don't have the "safety net" of chemo anymore. Its a huge relief that he's done with it, but at the same time there was something very reassuring about it - we felt like we were actively fighting, I guess. We'll just keep on going, though, and pray that all that chemo did its job.

While Benjamin played at his grandparents' house Brian and I had a chance to run some errands, and while we were out we found all kinds of SpongeBob party decorations. Benjamin had been thinking of having an Incredible Hulk birthday party this year, but he told me the other day that he decided to have SpongeBob again this year. When I asked him what made him change his mind he said "well, last year's party was fun and all, but since I was sick it didn't really feel like my birthday." That made sense to me, so this year we're going to have the greatest SpongeBob party and make up for last year's party. Last year he didn't have much energy, he didn't have any hair, he was hooked up to a TPN feeding him by IV, and he ate a piece of cake and then threw up - I don't blame him a bit for wanting to re-do that party. I told him that it will be the SpongeBob birthday party Take 2. We picked up all the decorations we could find, and while I'm here in town I'm going to order his cake (to be decorated with SpongeBob) at the same place we've gotten it every year - with the exception of last year. We've always had his party in Ashtabula on Labor Day weekend with all of his family with us to celebrate. Last year, of course, we couldn't travel, so it will be wonderful to get back to his old tradition. He's already received his main present - little Miss Emma the puppy - who still refuses to go potty anywhere unless its on top of linoleum, haha! - but I just want him to have great memories of this birthday!

Well, that's about all the news for now. Thank you for your continued prayers for Benjamin and for all his friends.

Love, Anne

Saturday, July 26, 2003 12:23 AM CDT

Hi everyone!

Please say an extra prayer for the Ervin family and especially for their little son, Luke. He is an adorable three year old boy, diagnosed with a brain tumor, who went home from the hospital on hospice. Please say a prayer that he and his family are comforted and that Luke is able to rest painfree - he has had some very difficult nights. His web address is www.caringbridge.org/oh/lukeervin

Today was another of Benjamin's T-ball games - he had a great game :2 singles and a home run!! He's having so much fun with this - it is such a pleasure to watch him out there! Zachary sits in his little stroller, clapping his hands and cheering for his big brother. Benjamin enjoys spending a little extra time afterwards playing around or playing catch with a buddy of his (and his little brother) who was also in his pre-K class two years ago. Next week are team pictures which he is very excited about!

He's spent the last couple of days playing at home with his little brother and getting ready to go visit our family in Ashtabula. He's not eating well at all again, but I'm trying not to worry about it. Some weeks are off weeks, I guess. He barely eats a bowl of cereal for breakfast, a small container of yogurt and part of a sandwich for lunch, and a few bites at dinnertime. It doesn't seem like enough to feed a bird - the baby eats more than this - but his doctor is aware of the situation and as long as this is the only symptom he's showing they're not alarmed. Maybe when we get out of town he will eat a little bit better.

This coming week I will be updating from Ashtabula where the baby and I will be staying while Benjamin and his Daddy have a "boy week." While my parents are doing a little traveling, Zachary and I will be around in case my Grandma (who has a big birthday this week)needs anything, and later on in the week we have family coming from Mississippi and Maryland to visit for Gram's birthday. Benjamin has T-ball practice and team pictures this week so he was kind of torn about what to do. He will be back up to visit next weekend, though, after the pictures so he won't miss Gram's birthday. I think this will be so nice for him and his Daddy, too. Brian had taken 6 weeks off when the baby was born last spring and they had lots of fun stuff planned, but it was during this time that Benjamin was diagnosed. While it was such a life-saver that Brian already had the time off to be there at the hospital, it was definitely not the fun time they had anticipated spending together. Brian is going to take two days off next week to spend with him, and the other three days next week Benjamin is going to spend at friends' houses during the day while Brian is at work. He's really looking forward to this! I'm really going to miss him and his Daddy, though, and I'm sure it will be very strange for Zachary, too.

That's about all the news from here. Hope you're all enjoying your summer! Thanks for remembering our little guy in your prayers!

Love, Anne

Wednesday, July 23, 2003 3:45 PM CDT

Hi everyone!

Please remember Luke Ervin and his family in your prayers. This dear,sweet little three year old boy went home on hospice last week, and he is having quite a struggle. His family could use all of our prayers and support. Thank you! His web address is www.caringbridge.org/oh/lukeervin

Benjamin had a very busy day yesterday between tutoring, PT at Children's, and T-ball practice. He enjoys all three activities, but by the evening he's getting pretty tired. Unfortunately none of these can be rescheduled for other days, so for just a little while longer Tuesdays will be busy days. His teacher, Mrs. Brinda, was really pleased with how well he's doing with his spelling. She said that he can spell any three letter word, easily, that doesn't have any tricky sounds thrown in there. She said that he works so hard - every time she asks him if he'd like to take a break he says "no thank you," and he keeps right on working. He's grown very close to Nancy over this past year and he really has learned so much from her. He had a little homework to do between yesterday's session and tomorrow's, and I found him working on his papers this morning without being reminded to get to work. I hope he continues to love learning. I worry sometimes about the possibilities of learning disabilities down the line because of his cranial radiation, and I worry that school won't be fun for him anymore. But they told me at OSU (where he completed radiation) that even if he does have some difficulties that he can learn and he will learn even if he has to work just a bit harder.

PT with Kathy went very well also. He couldn't wait to get in there and tell everyone about throwing out the first pitch at the Clippers game on Friday night and about his new puppy, Emma. For the first time yesterday I noticed a big improvement in how he walks down the stairs. Kathy had him come out to practice in one of the stair wells, and this time when he came down the steps he alternated feet on each step, and he kept his toes pointed straight ahead and his body upright - yea!!! This has been the hardest thing for him, so while he still needs to keep practicing we know he can do it!

By the time T-ball practice time rolled around I don't know who was more tired, Benjamin, Zachary or me. As always, though, he had a great time playing with the kids. We can see his running is slowly, but surely, improving with each week. His form looks better and while his speed isn't too great, he just keeps plugging away at it. Many of the parents are aware of what he's been through and they cheer for him and give him some extra encouragement. I think what makes us the happiest is that many people have no idea what his past year was like and are amazed when they find out - they say they never would have guessed. That tells me just how far he's come. Even one of his coaches (she had coached him when he was 4 years old) was totally surprised to find out what had happened. I told Benjamin before that its up to him how much he wants to tell people of his being sick, and he never has to feel bad about it or embarassed. I am happy, though, that at T-ball he's been able to just fade back into doing his little kid stuff without having to explain anything. He can just go and have fun! Aside from his running a little bit slower than the kids, he's doing everything they can do.

As for Miss Emma Louise Jones (that's what Benjamin named his puppy) her potty-training is nowhere near a success story yet. For those of you keeping track of this little battle, it is Emma :15+ Anne :0 - haha! Nobody really expects miracles right now anyway since she's only lived here for a few days, but it will be really nice to see progress from her.
She's very good at playing outside forever and doing her business the second she gets back in the house - ugh!! Oh well, we'll get there. She's absolutely adorable, though, and Benjamin is being very good about taking her out about 100 times a day (according to his own estimations) and brushing her fur. I have to say that I really appreciate our cats even more now - just plop them in the box and POOF - they're trained! Hopefully we'll be able to get some pictures of Benjamin, Zachary and Emma posted soon!

Thank you all for checking in on our little guy! He's doing really well right now.

Love, Anne

Monday, July 21, 2003 8:34 PM CDT

Hi everyone!

Please say an extra prayer for Luke Ervin - he and his family need all the strength, comfort and peace they can get right now.

Benjamin had a pretty quiet rest of the weekend after his big Clippers game on Friday night. After the game we went to a surprise birthday party at our friends' house next door, and Benjamin found a little buddy to play with while we were there.

Today was Zachary's 15 month appt. - its so hard to believe he's that old already! He's doing just fine - a little cranky tonight from his two shots, but otherwise alright.

Tonight Benjamin and his Daddy went looking for his early birthday present - a puppy!! He named her Emma and she is 4 months old. I'm not really a dog person - I like them, but I was bit when I was a kid so I've been leary ever since - but I have to admit this little one is adorable!! She's very tiny and she will stay tiny because she is a small breed - I told Brian that whatever dog they brought home had to be smaller than our cats - haha! Benjamin held her on his lap and she fell right asleep - he is over the moon! Brian has been bringing up the idea of a puppy for Benjamin for a long time, but I always resisted - two cats, a baby, our crazy schedule of the past year, etc...but things have settled down quite a bit now. Friends of ours just recently got a new puppy and when I was telling Brian about that this afternoon he brought up the idea for Benjamin again. We told him that Miss Emma is his early birthday present (and Christmas 2003, birthday 2004, Christmas 2004, etc...haha!) I have to admit that before they brought her home I was prepared not to be thrilled with the whole idea, but the second I got a look at her sweet little face and her two pink and purple bows on her head I was hooked, too. So now we have a new member of our family Emma Jones - Benjamin is still working on her middle name.

Thanks for looking in on Benjamin, and if you could please pray for little Luke. His web address is www.caringbridge.org/oh/lukeervin

Love, Anne

Friday, July 18, 2003 8:56 AM CDT

Hi everyone! (**new update)

Please remember a very special little boy in your prayers. Luke Ervin is three years old and he has been fighting a brain tumor for about a year and a half. His family brought him home on hospice care this past week, and they could use all of our extra prayers.

**I didn't add anything about this yesterday because I didn't know if the weather would hold out, and I didn't want Benjamin to be disappointed if I told everyone and then it didn't happen. Benjamin received a call from Make-a-Wish yesterday asking him to come to the Columbus Clippers baseball game to throw out the opening pitch of the game!! He flew around the house all afternoon, so excited, until it was time to go. We even went outside and practiced his pitching for awhile so he would be ready. We were met by Beth from Make-a-Wish at the stadium, and Benajmin was given a T-shirt by the group doing the fund raising (TicketAdvantage.com), and a friend of Brian's from work had placed a call to a friend of his who works for the team and they had a hat, a T-shirt, and a team jersey waiting for him. He looked so cute in his jersey and hat!! Benjamin had a ball playing before the game with all of the activities set up for the families - T-ball, pitching, etc..we were afraid he was going to use up all of his energy. Then when it was time to go in we were all taken down to the field and Benjamin met the team's catcher and posed for pictures with him. After that he went out on the field for the opening ceremony and presentation of the fundraising check to Make-a-Wish, and then he was introduced. He looked so tiny out on the field, but he insisted he wasn't nervous a bit. That is until they walked him ALL the way out to the pitcher's mound and he saw how far it was back to the catcher at home plate. We thought they would have the catcher stand closer, but Benjamin was funny - he got the most determined look on his face, did his little wind up and kick, and he heaved that ball with all his might! Everyone cheered for him and he had the biggest grin on his face! Then the catcher came out to meet him on the mound and he signed the ball for Benjamin. Benjamin came running back to us with the ball and he was most excited about that. He said "I knew I was going to get to pitch the ball, but I didn't know they would give it to me and sign it too! It was so thrilling for him to get that opportunity and we thank Make-a-Wish so much for letting him have it! What was also very neat about the night (being Kid's Night) another kid was chosen to throw out the second pitch of the game, and the girl who was chosen is the daughter of the PICU nurse who took such wonderful care of Benjamin the night he went to the PICU after his brain surgery to remove his tumor. Kathy was so incredible in her care for him - Brian and I were stressed beyond belief and Benjamin was in terrible pain and the morphine would not hold it back. Right after the other nurses would start the medication he would break through it and be in awful pain again. We kept asking for anything to help him, and we were always told that he couldn't have any more yet. Then Kathy came on duty, and she jumped right in and got the doctors and made sure he had plenty of pain medication to keep him comfortable. She stayed right with us and did everything she could to help him and us. Benjamin will never remember that night because of how heavily medicated he was, but Brian and I will never forget her! She also looked us up anytime we were admitted so she could visit with Benjamin - she really went above and beyond for him, and we really appreciated that. She told me last night at the game "I don't think it was a coincidence that we were both chosen to be here tonight," and I think she's right. Can you imagine the odds of that in an area the size of Columbus that our two families would both have been picked - ours from Make-a-Wish and hers from Kid's Night. It was great to see her under fun circumstances and she was so happy to see Benjamin and how far he's come. She kept saying that she just couldn't stop staring at him - she really knows how far he's come too because she saw how he was that first night. We really believe that God has sent the very best angels every step of the way through this!

Benjamin has had a nice week doing some of the things he likes best. He had a play date with his best buddy Rochelle on Wed., and this was the first time he had been back to her house since he was sick. We went over to visit her school and they played on the playground, and then we went back to her house and they played in the pool. These two have known each other since they were first born - they were born 2 and a half weeks apart, so they have a really special bond.

Yesterday was PT and OT day and I'm so happy to say that both of his therapists reported progress in each area. From one of the chemos Benjamin was on he experienced a lot of stiffness in his legs and problems with foot drop (when you can't pull your toes back, like to flex your foot). Everyone is supposed to be able to flex their feet back past 90 degrees to be about 15 degrees past the 90 degree mark. He isn't able to do that yet, but she can move his foot into that position which means he will be able to do it on his own at some - he just has to build up his foot strength now. His ankles had been so stiff that it wasn't even possible for her to push his foot into that position before, so he has really made progress. His OT therapist, Karen, said that he has reached some of the goals already that were set for him at the beginning of therapy (way back when). He is able to cut paper with much more accuracy now, and when she measured the strength in his hands it has increased by a couple of pounds in each hand. They are still working on tying shoes, but I think that as his hand strength improves that will improve as well. While we were there I also ran into one of the nurses who took care of him on the neurosciences floor before he was sent up to oncology. She was there right at the very beginning when he was first diagnosed and had brain surgery. I remember after surgery when Benjamin just wasn't himself at all, and we worried that something had changed in him as a result of the surgery. She reassured us that for some reason after having brain surgey of that type all of the patients react the same way. She told us that all the kids typically act that way and it takes about three weeks before it stops, and then all of a sudden their own personality snaps back. Benjamin was in an awful lot of pain at the time and his body was really out of sorts after what he'd been through. There really was no way to carry on any type of conversation with him. That whole three weeks he cried and whined alot, and the only things he said were "help me," "I need medicine," and "I need a washcloth." He loved the feeling of either a very warm or a very cold washcloth (depending upon his mood and where the pain was) against his head and around his neck. It got to be so cute because any time he had an ache or a pain, no matter where it was ( his finger, his elbow, etc...) a wet washcloth was his magic cure. But anyway, this nurse was very calm and reassuring for us because we had no idea why Benjamin couldn't talk to us about anything else except those three phrases. I have to confess I wasn't so sure that in three weeks things would pop back to normal, but she was right (I never should have doubted!), in exactly three weeks there was a tremendous change in Benjamin and he started talking and joking again and trying to play his video games - then we knew everything was alright - haha!!

Last night we went shoe shopping for Zachary - he needed new shoes or "twos" as he calls them. For the past two days he had been bringing his outgrown sandles over to me and setting them on the floor in front of his own little feet and pleading "twosies." This kid love shoes right now and he was crushed when I couldn't fit his old ones on his chubby little feet anymore. Now he's got a pair of Buzz Lightyear sandles and Thomas the Tank Engine tennis shoes to keep him happy for probably a month or two, if I'm lucky - haha! He's really had an explosion in speech and learning lately, and this is one of my favorite phases to watch! He's learning so many new words and he understands so many new things. Our favorite thing right now is that he calls everyone a "cootie" for "cutie." I always say "hey cutie!" and now he tries to imitate that. He also likes to "work out" with Benjamin when he is using his hand weights. While Benjamin is pumping iron, Zachary picks up the little one pound weights and moves his arms like Benjamin and counts, "two, ten, two, ten" which are the only numbers he seems to remember right now. It just cracks us up!

Well, that's about all the news from here. Thank you for thinking of Benjamin and praying for him, and please say a prayer for the Ervins. His web page is
www.caringbridge.org/oh/lukeervin

Love, Anne

Wednesday, July 16, 2003 6:55 PM CDT

Hi everyone!

Just a quick update because there is really nothing new to report about Benjamin. He enjoyed the day with his best buddy Rochelle today, and tomorrow it's back to Children's for PT/OT. Thank you to everyone who has been checking in on him.

Please remember Luke Ervin in your prayers. He's a very sweet little boy we met during our first admission for chemo. Luke and his Mommy were actually the first people we met. His family is going through an unimaginably painful time, and they could use all of our prayers.

His web address is:
www.caringbridge.org/oh/lukeervin

Thank you so much!

Love, Anne

Monday, July 14, 2003 3:35 PM CDT

Hi everyone!

It's very nice to say that there really isn't much new to report about Benjamin! He had a great weekend, and he's looking forward to seeing his tutor this week and having T-ball and PT/OT. He's still working very hard on his own with his hand and ankle weights. We don't even have to remind him to do his exercises - he gets right to work on his own. He told me that he wants to be big and strong like his Daddy! He also told me, and I quote - "I'm not doing this for the ladies, I just want to be strong like my Daddy." I thought I was going to cry I laughed so hard. He's at a very definite stage right now where he'd rather do anything except impress girls. We get a kick out of it!

I talked with Suzanne, Benjamin's nurse, today about his appetite, or rather the lack there of. His appetite has been steadily decreasing since we came back from Disney. At first we weren't too worried about it because its hot out and who feels like eating when they're warm. But each day he's been eating less and less and he's lost the weight he put on while we out of town (from all the extra ice cream he ate morning, noon, and night at the Ice Cream Palace at the Give Kids the World Village where we stayed). When he finished treatment he was around 48 lbs. and he's now down to 46 lbs. I'm sure he had to have gone above 50lbs. on our trip because we could see tiny love handles on his belly - it was cute!! Those are gone now. He tells me that he's very hungry, I make whatever meal its time for or give him a snack, and after 2 or 3 tiny bites he says he all full now. Yesterday all he ate was 3 donut holes for breakfast, a small container of yogurt for lunch, and a few bites of his Kids Meal from Wendy's - a burger. Now I know that none of these meals sound extremely nutritious, but since we've been home we've tried to get him to eat his usual basically nutritious (for a six year old) meals, but he wouldn't eat much. Then we thought we could entice him with some of his favorites like donut holes and Happy Meals, but that didn't work either. This morning he had only two donut holes and that was it until around 3:00pm. I was really getting nervous until I talked to Suzanne and she told me that Dr. Olshefski wants us to hold off on the Megace (the medicine that makes him hungry). He felt that Benjamin would eat when he gets hungry enough, and he doesn't want Benjamin to have to be on more medications than are necessary. Our biggest concern was if this sharp decrease in appetite was a sign of tumor recurrence. She said that this symptom on its own would not be a sign of that - thank God! I told her that I feel bad to call because I always jump to that worry, but she said that for us we'll probably always jump to that after what he's been through.

Amazingly enough, after I got off the phone with Suzanne Benjamin decided he wanted lunch. He went on to eat almost a whole salami, pepperoni and cheese sandwich, a whole container of yogurt, a few chips and glass of milk!! Then just an hour and a half later he had a snack of cereal. This kid is going to turn my hair snow white - haha!! I'm just relieved to see him eat again. We're just supposed to watch his weight between today and a week from today. If he's lost 4-5 lbs. than I have to call back. Hopefully he will eat as well as he did this afternoon and we won't have to worry about that.

Other than that things are pretty quiet around here. Please keep Luke Ervin in your prayers (his page is www.caringbridge.org/oh/lukeervin). His family could use all the prayers and strength they can get right now.

Thank you for checking in on Benjamin!

Love, Anne

Saturday, July 12, 2003 4:21 PM CDT

Hi everyone!

*Added on Sun. July 13th If you could, please say an extra prayer for friends of ours whose adorable little boy, Luke, was admitted yesterday. This family is the first family I met when Benjamin was first admitted for chemo, and they are wonderful people! Luke's mom, Ivy, showed me around the floor and helped me with info. on what to expect as Benjamin started chemo. She is one of the kindest people I know! Yesterday they received devastating news about their beautiful three year old son. His web page is www.caringbridge.org/oh/lukeervin

I just wanted to send out a little update about Benjamin's latest activities. He and his brother finally seem to be catching up on their lost sleep - at least Benjamin doesn't have the dark circles under his eyes anymore. They've both been doing a better job of sleeping in so that's helped alot. I think I could sleep all day some days - I'm still feeling wiped out, but my Mom said that all the events of the past year are probably just catching up finally.

Benjamin worked really hard at PT this week - he's up to twice a week sessions now. He doesn't have his lace-up ankle brace yet - it's on order - but he also hasn't twisted his left ankle in a little over a month. For a while there he kept re-injuring the same ankle, but maybe the strength in his legs is getting better because its been a little while now. We felt that the added protection for that left ankle would still be good for him so when the brace comes in he will start wearing it when he runs around outside and for T-ball.

We had planned to go to Movies in the Park last night, but Brian's car was in the shop. We picked it up last night, but on the way home it broke down again and Brian had to push it into a parking lot. Thank God its a small car since he had to push it himself-haha!. We had so much running around to do to make arrangements to take care of the car - AAA calls etc... - that it was too late to go to the movie. Benjamin was pretty disappointed and we weren't too thrilled to have just paid all that money only to have the car break down again, but we decided on the ride home that we'd rather have problems like that this summer compared to the problems of last summer anytime!! The whole business was very aggravating, but it pales in comparison to larger issues - so we'll just be thankful!

Today was a much better day! Benjamin had his first T-ball game today and he was so excited for it! First I have to say that we were so pleased that our friend (and Benjamin's nurse practitioner), Suzanne, came to his game with her husband Brian and their little girl, Kelly. We were so touched that they would take time out of their weekend to come watch Benjamin in his first game - it meant so much to all of us!!! I think Zachary has a little girlfriend now! They clapped, did high fives, and even hugged each other - she is a cutie!! Benjamin did a great job. He had a lot of good hits, and he had a very serious expression on his face throughout the whole game. He meant business - haha! It was such a great feeling to see him back out there having a ball. He told me that one of the kids from the opposing team was trying to psych Benjamin's team out, and this kid told Benjamin that he wouldn't hit it far. Benjamin didn't get frustrated or mad - he just told the kid "you better look again!" I had to laugh. I'm glad that he's able to get back out around kids and not be shy. If kids ask about his scar he doesn't get upset, he just matter of factly says "oh, that's where my tumor was, its gone now." Then he goes right on playing. With first grade starting in a month and a half I think its going to be so important for him to be able to explain things in his own words to curious kids, and he has to be able to do it matter of factly. I'm more nervous about his going to school than he is (of course I don't tell him that). I hope that if the kids see that yes, he had brain surgery and now he has a scar, but other than that he's no different than they are, I hope that they can move on from it as quickly as he does and just play like usual. I've had him home with me for nearly seven years which is longer than most parents get to have their kids with them before going off to school so its going to be hard to let him go. On the other hand I'm so grateful to have him with us and doing well that its time for things to get back to normal. Oh well, long story short - his game was lots of fun and he can't wait for practice on Tues.

Benjamin spent the afternoon at his friends the Thomas' house. He and Ben, Emily, Dillon, and another neighbor boy played in their pool, played video games inside, and played more baseball outside. He had such a good time with the kids - thank you, Thomas' for inviting him over!

As for the rest of the weekend we really don't have anything planned other than to play outside and enjoy the time together. Its so hard to believe how different this summer is compared to last summer. This time last year he was going through six weeks of daily cranial/spinal radiation at OSU - The James Cancer Hospital. He was such a trooper through that whole exhausting time. Every morning I got up and took a shower and cried until I couldn't cry anymore, and then I held it in all day until I went to bed that night and then I cried some more. I longed for days like this last year and wondered if and when we'd ever get back to that. Back then all I wished for was for Benjamin to be OK again and for life to feel carefree. I really feel for all the families we know who are still going through this with their little ones. No one should ever have to feel that kind of pain! I'm so thankful we live here so close to Childrens and OSU and the incredible people who took care of him (and all of our family, really!).

Thank you so much for your prayers!

Love, Anne

Tuesday, July 8, 2003 7:03 PM CDT

Hi everyone!

Not too much is new here - we're just trying really hard to get adjusted to a normal routine after so much traveling around. The boys are not bouncing back too well - they're both tired, but not sleeping well thanks to the really violent thunderstorms we've been having every night. I think being away for a week in Florida and then being gone for about five days this past week is finally catching up to us all. Right now I can hear Zachary out in the front room with his Daddy and Benjamin saying "night-night," which is his signal that he's getting tired. Tonight was supposed to be T-ball night, but because of more storms coming in that was cancelled. We're actually pretty glad because Benjamin was already tired, and then he also had PT today.

Benjamin's first T-ball game is Saturday morning, and he's so excited! They get their jerseys that day also, so that is a very big deal to him. He doesn't have anything else going on until then except one more PT/OT session on Thurs. so hopefully he will catch up on some rest. He slept in our room last night because of the really bad storm that came through - 80 mile an hour winds!! I woke up and it felt like the whole house was shaking, and during one of the flashes of lightening I saw Benjamin's little legs come tearing into the room. It was so cute! They're predicting more storms like that for the rest of the night so I'm betting that we will have "company" again tonight.

Other than being really tired from all the activity Benjamin seems to be doing really well. He's glad to have his pool set up in the back yard again - last year there was no swimming for him. He and his brother tried out their Dad's new toy - a Slip-n-Slide(yes, that's right, Brian purchased this outdoor game for himself. Our kids and some of the neighbors got a kick out of watching Brian take a few turns on it). Benjamin is a little tentative with it because he's afraid that sliding on his belly will hurt the spot where he had surgery about a month ago. Zachary takes off on it (with me holding his hands) until his legs slip out from under him and then he slides into the pool of water on his back. I thought this would scare Zachary the first time he tried it, but he was more interested in that than in getting in his little baby pool. It is so much fun to watch them play together and have so much fun with each other!! Benjamin really acts like his old self, for the most part. He's not eating very well again, but I'm trying to wait it out a bit to see if its just a little phase. The whole time we were in Florida he ate better than he's done since before he got sick, but since we've been back he's been backsliding quite a bit. He did a little bit better today, and right now he's having a snack. This is the first snack he's asked for in days - down at Disney he ate every meal and wanted ice cream in between each one. Maybe that's how your body reacts after being through so much, I don't know. He had an awful lot of chemo and his system was so mixed up for so long - he didn't actually eat on his own for 10 months (he had TPN's and NJ tube feedings) so maybe it takes a while to get back on track. I think I will call Suzanne (his nurse practitioner) tomorrow just to get her opinion, but if anyone reading this has been through this same thing and would like to pass on the information to me I would really appreciate it. I just need to hear that this is totally expected and to just give it more time, and then I will relax. At least the vomiting seems to be coming under control - its been about a month since he's gotten sick out of the blue. We've had several close calls lately, but after taking some deep breaths he's been OK. I think he's felt that way due to two reasons - being tired and being too hot. Anyway, this is the longest period of time he's gone without getting sick since before he was diagnosed. Please pray that it continues for him - how miserable that is for a child (or anyone) to feel that way so much of the time. I didn't even know it was possible for a person to get sick that much. Thank God that is another thing that has gotten better with time. Dr. Olshefski told us that for some kids with his particular type of tumor and surgery it takes from six months to a year before the vomiting stops. The spot where his tumor was located was in the place that tells your body that you're going to be sick, and even after the tumor and the pressure is gone that spot is still sensitive for a long time afterwards.

Thank you all for still checking in on Benjamin and for keeping him in your prayers. Please pray for all these kids who are going through this - we know a few little ones who are really going through a tough time right now. Its so heartbreaking to hear about their struggles and they could really use the extra prayers. Thank you so much for thinking of them!!

Love, Anne

Sunday, July 6, 2003 7:47 PM CDT

Hi everyone!

I hope everyone enjoyed the holiday and had time to spend with family and friends! We just got home today from Ashtabula, OH from a nice long weekend visiting with our family and friends. The weather was pretty warm, but it was nice out and the kids were able to play outside and to get to the beach. The boys and their cousin, Ashley, had a ball playing in the sand and the water. Benjamin was a little leary of the waves - they were really crashing when we first got there. He's pretty steady, but he does lose his balance a little easier than others so he didn't like the feeling of the waves knocking him back. He stayed in for a short time, and then he went back to dig in the sand with Aunt Kim. Zachary and Ashley loved the water, and Brian, his mom, and I stayed in with them for quite some time. This was Zachary's first time in Lake Erie, and he had a great time bobbing around in his little raft/floatie. Over the past year when we were in the middle of all the chaos there were many days when I tried to picture us all down at the beach relaxing in the sun and playing in the water. Whenever I'm trying to relax my mind that's what I always picture - stretching out on the sand and listening to the waves. It felt so good to be there celebrating a happy time!

The weekend was relaxing for all of us. Benjamin and Zachary had fun playing with everyone, I enjoyed visiting with all the family, and Brian was able to get out golfing twice with the some of the guys in our family. As always, the time went by way too fast!

We have a lot to look forward to this week. Tomorrow one of Benjamin's friends is coming over to play and hopefully swim - if the weather cooperates. Then on Tues. Brian's sister Kim is coming down with her daughter Ashley to spend a couple of days. They will probably be here when we get back from PT and OT. As soon as we got home today I got Benjamin's and Zachary's pools set up out back, and Brian set up the slip-n-slide so all the kids can have fun out there. If the weather is good on Friday night then we should be able to go to Movies in the Park, too. This summer feels so much better than the last one. We tried to do fun things whenever Benjamin could last summer, but it was so hot and he really couldn't tolerate it. He was also hospitalized so much last summer, too, so he usually wasn't up for doing too much. I can't really describe how weighed down we felt by worry, fear of each next phase of treatment, and sadness at seeing the changes happening in Benjamin (losing his hair, scars from surgeries, progressing weakness in what he was able to do physically, etc...). That feeling was like a slap in the face in the first seconds after waking up each day. It is such a joy to wake up every day now!! Very often Benjamin wakes up early when his Daddy gets up for work, and he sneaks in our room and climbs into our bed. Sometimes I hear him coming in the room and sometimes he sneaks in so quietly that I'm surprised when I wake up a little later and see him sleeping there. He sleeps so peacefully now, too. During the past year he woke up often, tossed and turned and moaned and cried out frequently in his sleep. He didn't seem to get a break from what was happening to him, even in his sleep. Now he usually sleeps straight through the night, and he sleeps soundly. Very often I have to shake him lightly to wake him up - he's really out! Well, I've really gotten off track now.

Please keep Benjamin and all the other kids in your prayers! Those prayers really give us all strength. Thank you all for your support!

Love, Anne

Wednesday, July 2, 2003 7:28 AM CDT

Hi everyone!

Well, yesterday certainly was a busy one! Benjamin had his first meeting with his tutor, Mrs. Brinda, (whom he loves!!) since the end of the school year. He's going to be working with her through the summer just so he stays fresh for heading into the school year. We love having her come over, and it felt so strange not to see her these past few weeks! I wondered if Benjamin might be a little rusty after having a few weeks off, but Nancy said that he did just fine. He had lots of news to share with her from what he's been up to lately and from the details of his big trip. She's going to come over twice a week to work with him, so I think that will help him go into first grade with as much confidence as possible. Its going to be a big adjustment for him because he's used to having classes for only one hour a day, three days a week. He could sit there in his jammies if he wanted to even, but things will be a lot different this fall!

He also had PT and OT yesterday afternoon which he almost missed thanks to his Mommy's brain being in a permanent fog it seems like. I looked at the clock wrong and thought we had an extra hour. Then when I looked again I realized that we had to be at the hospital in about 20 minutes. Thank goodness we were ready to run, traffic wasn't bad, and we made it just ten minutes late. His therapist, Kathy, had a lady come in to check Benjamin's left ankle because he seems to be continually re-spraining (is that a word?) it. We weren't sure if he was going to need some kind of a brace or something for extra support. She checked him over and said that he has such good range of motion that she hated to put him in something too restrictive so she thought we could start out with a lace-up ankle support. She said that if it doesn't offer enough support we can always move to something more heavy duty. It was so great to hear what she and Kathy thought of his range of motion. After having so much of that one chemo that causes foot-drop and problems with range of motion (which he had quite a problem with for some time) I was really relieved to hear that he's made so much progress. Benjamin used to walk with a lot of difficulty - one time we were stopped by a doctor at Children's as we were walking over to his weekly appt., and the doctor said "he must be taking vincristine, isn't he?"

Anyway, he had a good session with Kathy. Now we're going to be continuing his exercises with his ankle weights at home, and in addition we have some new ones to work on while he stands at the bottom step. He has a little bit of trouble coming down stairs. He can do it, but he often tries to bring one foot down and then bring the other one down to meet it on the same step instead of stepping on each step by alternating feet. Its very hard for him (especially on one leg) to bend his leg forward enough to let his other leg step down. We'll keep working on it. He also had a good time with Karen - his occupational therapist. They continued working on cutting things out from paper and tying his shoes. Starting next week he will have PT twice a week and OT every other week.

Finally, Benjamin rounded out the day with his first T-ball practice. He was so excited all day long! Brian took him over and I met them there with the baby. Brian said that when they got there Benjamin recognized a boy from his pre-K class. They havn't seen each other in over a year. Brian told me that Benjamin walked right up to him and said "Are you Alex from my pre-K class? Remember me, I'm Benjamin!" I was afraid he might be a little shy going into this activity - haha! He was so happy to see a buddy from his old school and they've already made plans to play at each others' houses. As far as the baseball went, Benjamin did really well, and he worked so hard! He can really hit the ball still and his arm is still good! Brian said that they will be working on some catching and the jumping jacks for warm-ups - even before he got sick Benjamin could never do jumping jacks. Brian was so funny last night - he said that for a kid who loves to dance and has a pretty good sense of rhythm you'd think he could do a jumping jack. He looks so cute trying!! With his starting to get back to alot of regular activities I sometimes forget what he's been through. When the kids had to run for warm-ups, though, it was painfully clear that Benjamin has been to hell and back. They were supposed to run from one end of the field and then back. The whole group started off, and the kids were already on their way back to the starting point while Benjamin was still chugging along trying to make it to the other end. Brian is an assistant coach so he jogged down to run the rest of the way with him so he wouldn't have to do it alone. My heart sunk because I was worried that he would be in tears and feel really disappointed. To me it wouldn't matter how fast or slow he goes - I just hate for him to feel disappointed or left out - but he kept plugging along. He didn't quit or complain - he just kept going til he made it the whole way. Then he jumped back in with the group and never missed a beat. Brian came over to talk with me then and he said that maybe we're pushing him too fast, too soon. On the way home I asked him if he was disappointed that he was running behind the kids and he said - very matter of factly - "Its not a race, ya know. I just did my best." I don't know what he was thinking deep down, but he seemed to be ok with it. Here I was worried about him and he's just happy to be there. He handles things way better than I do sometimes, that's for sure! Anyway, long story short - he had a ball, so he's happy and we're happy!

Well, that's about all the news from here. My next update will probably be from my parent's house because we're going there for the holiday. We're really looking forward to seeing everyone, too!! Benjamin has some bike-riding plans with the daughters of friends of ours, and he and his cousin have some serious sleep-over and beach plans. I hope everyone has a wonderful time picnicing with family!

Love, Anne

Monday, June 30, 2003 10:20 AM CDT

Hi everyone!

I hope everyone had a nice weekend! We spent a pretty quiet weekend, moving pretty slowly, trying to get settled back into our routine. Our vacation was very relaxing, but unfortunately the baby didn't sleep well the whole time. He woke up several times a night, looked around crying, and stayed up for quite a while every night - I think he just couldn't get used to his new surroundings. He's slowly, but surely, getting back to usual. At least he's letting me sleep in so I'm feeling much more rested.

On Friday night our family went back to Movies in the Park here in Pickerington which is somewhere we havn't been able to go in over a year. Every Friday night in Pickerington the town shows kids' movies on the back of a big old white barn. Everyone sits down in this little hollow, and before the show starts the kids play on the playground and run up and down the hills. Its the neatest thing, and we've enjoyed going to this every summer in the past. Last summer we couldn't go at all because either Benjamin was in the hospital or the weather was so hot, and Benjamin really couldn't tolerate the heat at all. He had always had so much fun there in the past playing with his friends, and I know he missed it so much last year. This time he was able to go back. I don't even think he really cared about the movie - he was just so happy to take his little lawn chair over to sit with his friends and to talk and play around like always. His friends welcomed him right back and made him feel like no time had even gone by. Every week or two over the past year their parents would call and make sure he knew that they were thinking of him and waiting for him to come back to play - we appreciated that so much, and so did he! Zachary and I didn't make it through the whole movie - one year olds don't do very well sitting through movies - so he and I went home and Brian called me when the movie was over and we went back to pick them up. We were so happy for Benjamin that he could spend that time enjoying himself with his buddies.

This week starts the t-ball season for him, and he is so excited! Brian is going to be an assistant coach for the team too. This was something that we had Benjamin signed up for last summer, and Brian was going to help out then, too. This was all before his diagnosis, and the day I had to go pull him from the team was really hard. I went into the YMCA and told the girl at the desk that my son wouldn't be able to play ball this year and I tried to just leave it at that. They had to have a reason to put down on the form in order to give us a refund, and when I started to explain that Benjamin had been diagnosed with a brain tumor and had just had surgery I burst into tears right at the front desk. Once the tears started I couldn't stop them, and I felt so embarassed for losing it (Benjamin wasn't there - he was still in the hospital). The poor girl felt so bad that she tried to get through the paper work quickly so I could leave. I can't wait to walk in there this Tues. and bring him with us this time!! Brian got Benjamin's little shoes with the spikes for him, and he can't wait to wear them. I don't know how long Benjamin's energy will last during the practices and the games, but just to see him out there will be so great! We were so happy that he was able to tolerate the heat in Florida with no problems so we're hopeful for him to be able to be out on the field in the sun without feeling sick.

So far Benjamin has been feeling well, and his energy has been slowly increasing. He's still on three medications - one antibiotic on Sat. and Sun. only for six months as a precaution, and two other medications for the problems he had with reflux from not eating for 10 months. We're hoping that maybe he will be able to be weaned from those two medications soon because when we were at Disney there were a few times when he didn't get his medicine when he usually takes it (one he takes 4 times a day - at every meal and once before bed), and he ate food with no problems at all. Before he had to have the 4x a day medicine at exactly the same time every day or else he got sick. He seems to be making progress! His balance is pretty good, too. We were told that he will never have the same sense of balance as other kids just because of where the tumor was located and from having surgery to remove it, but its not bad. He still falls from time to time, but he seems to be getting steadier. I worry about him running around the bases at t-ball, but we'll just take it as it comes. I'm very grateful to have some of these things be the greatest of my worries at this point. Of course the worry we feel when each MRI comes around is lurking back there in our minds, but amazingly we've found that we really can push it away for the times in between scans. I never thought that would be possible, but it gets easier. I guess this whole thing has taught me that I'm really not in control of anything even though I like to think I am. Letting go of that control is freeing in a way. In the beginning of this whole journey it made me feel like I was going to jump out of my skin trying to pull some of that control back, but as time has gone on we have learned not to sweat the small stuff. I was reading another child's page the other day (this child also is fighting a brain tumor), and his mom was talking about their plans to decorate this little guys bedroom. He wants purple walls and purple carpeting (he's three, I believe). She said that under normal circumstances she wouldn't really consider these color options but when your child has a brain tumor you wonder about what's the harm in having an all purple room if that's what he wants. I could really see what she saying because there are so many times in a day when something happens and now I step back and look at it and think that in the big scheme of things whether its such a big deal at all. I just wish I could have learned that lesson in some other way - without Benjamin having to go through what he's been through. Oh well, now I've really gone off the topic, I guess.

Zachary is doing well - he's getting so big, he's all over the place and into everything, and he's talking so much! He's such a sweet baby and even though he gets on his brother's nerves at times since he can now reach Benjamin's toys, Benjamin looks for him first thing in the morning and he doesn't go to bed at night unless he can give "his" baby a hug and a kiss. Zachary calls Benjamin "Bubby" which I guess if for "brother" because he can say "Ben-Ben." The two boys are so different, but they are so great together! Benjamin loves to teach him things, and for the most part Zachary loves to watch his big brother and cheer him on- unless Benjamin takes something away from Zachary, boy can that kid scream then - haha!

Well, I'll update more this week - Benjamin has t-ball and PT this week. Starting next week, I believe, he will be having PT twice a week in order to boost his endurance. After he ran around the track for both laps at the Relay for Life two weeks ago I told him that I was going to tell Kathy (his therapist) about that and he wouldn't have any excuses for pooping out on the treadmill at PT - haha! While we were in FL one day I forgot my camera in our villa so I decided to run back from the Gingerbread Restaurant to get it. Now mind you, this village is not that big and it was a pretty short distance from the restaurant to our villa. I started out running and I probably only got about 30 feet before I "ran out of gas." I started laughing at myself because my child who was on chemo for a year and had very little exercise ran for half a mile and I couldn't even make it a short ways down the street. You've gotta love his determination!!

Thank you so much for praying for him and for our family - we appreciate all the prayers and encouragement!

Love, Anne

Friday, June 27, 2003 3:33 PM CDT

Hi everyone!

Well, we're back! That week down in Florida was the most relaxing and fun-filled week this family has had in the longest time! Benjamin popped out of bed bright and early Sunday morning, and I think he had a non-stop smile on his face for the next six days. I can't say enough about the wonderful treatment our whole family received from the Make-a-Wish organization, the Give Kids the World Village (the village we stayed in), Disney, Universal Studios, Gatorland, and everyone in between at the airports here and in Orlando who helped us get back and forth and treated Benjamin like royalty. The village we stayed in was so awesome for kids -the whole family, really - you could have a great time without ever leaving there. We stayed in a little villa (very comfortable!!), and everyday there were so many activities the kids could choose to take part in. One night Nickelodian came over and played games with the kids (they played the pie game and they even brought the slime!) There was a beautiful pool and boy did the water feel nice after the warm days. One morning the Disney characters came over to spend time with the kids for autographs and pictures, and this morning the Barney characters were there. Benjamin wasn't into Barney, but Zachary thought it was great! Zachary is also very taken with Mickey Mouse now too. We were very lucky with the weather while we were there, too. It was warm, but not hot for most of the days, and the last two days that were hot cooled off to be very pleasant in the evenings, so one of those nights we went back to Disney to get a little more time in.

Disney was Benjamin's favorite place of all the parks we went to - he loved the Magic Kingdom the very best! The people at Disney were fantastic in taking care of Benjamin's every need, too. He had a pass that let him up to the front of the lines for rides, so he was able to ride everything he wanted to in the time that we were there. He wore special buttons from Make-a-Wish and Give Kids the World, and the people working at Disney really looked out for him. Anytime someone who worked there saw him with his buttons they came right up to him and took such special care of him. If we were in line for autographs from a character they would pull him out of line and bring him to the front (they always asked the people at the front if he could go ahead and people were extremely generous in letting him go). The characters would then sit down with him and spend a little extra time talking to him. It was just unbelievable!! They really made the experience above and beyond anything he could have expected! He even said at one time that it was all magical!! Brian and I had a ball taking turns going on rides with him - it was so great to just have nothing but fun - for a whole week!

We spent one day at Univeral Studios, and that was a lot of fun as well. Benjamin mainly wanted to see SpongeBob and be on the show SlimeTime (from Nickelodian), and he was able to do both of those things. SlimeTime is on hiatus now, but they're still doing the show with the kids - just not taping. Benjamin was able to get right in (again he had a pass, and they were wonderful about getting him right into the show), and he even got to take part in the show. He was picked to be in one of the relay races. He was just beaming when he got done!!

We decided to check out Gatorland one day too. It is a gator farm, and they have many attractions as well. It was so neat to see all the gators up close, and Benjamin really got a kick out of the shows. As part of his package for being there through Make-a-Wish and Give Kids the World he was allowed to have a free picture taken of himself holding a snake and a gator, but he decided not to take them up on that offer - I don't blame him a bit - haha!!

Our last day in Florida we decided to spend back at the village and it was a really peaceful way to end the vacation. They have a building that is full of games, remote control boat racing,and a huge train track set up in a whole village. Benjamin loved that place! We spent some time in there, and of course we had to get ice cream at the Ice Cream Parlor that serves from morning to night. Benjamin pounded the ice cream all week - I think we went there about three times a day every day. We also spent time in the pool and at the putt-putt course that is also on site. Last night also included a visit from Santa, cookie decorating, and horse-drawn carriage rides around the village. This village was so unbelievable - they had everything a child could want -a pool, a big game room, a putt-putt course, a movie theater, a play castle called the Castle of Miracles, an ice cream parlor, a merry-go-round, etc... and everything is just given to them at no cost to the families. Even the meals in the Gingerbread Restaurant are given to the families. Every day when your family leaves your villa someone comes in and leaves gifts for the children, too. The Give Kids the World Village doesn't publicize -they rely on word of mouth from parents and people associated with the organization. If anyone reading Benjamin's page knows of a child with a life-threatening illness who would like to visit this village I would be more than happy to pass along the information. Just feel free to e-mail me. Benjamin and Zachary loved every minute of it there, and Benjamin made some new buddies there too. We were so excited to meet another family visiting there from Ashtabula, OH which is where Brian and I are originally from (and where most of our families still live). Benjamin and Doug had a great time together, and it was kind of neat that this is a buddy that Benjamin could actually see again when he goes to visit his grandparents. His family actually lives just down the street from my parents house! What a coincidence!

As a part of his Wish Trip we taken to and from the airport by limo, and Benjamin thought that was just the neatest thing! The drivers we had were so nice and were so good to Benjamin. On the way home the driver took Benjamin around the block so he could see if his buddies Benjamin, Emily, Dillon and Zoey Thomas were outside playing so he could wave to them (Ben and our Benjamin met and became buddies from being in the hospital and treatment together), but no one was out. He beeped the horn in front of the house, though, so if you heard some beeping out front, Thomas family, it was just us - haha!!

Being able to spend time with our little family in a wonderful place and having a relaxing fun time was the best thing we could have imagined! We are so grateful to everyone who worked together to make Benjamin's Wish Trip come true - it was a time that we will never forget!! Thank you for looking in on Benjamin!

Love, Benjamin

Saturday, June 21, 2003 2:05 PM CDT

Hi everyone!

Just wanted to update one more time before we head out for Benjamin's big trip to Disney tomorrow morning. He's about beside himself with excitement!

We've had a really nice weekend so far visiting with Gramma and Papa Jones who came down for a visit. The boys had lots of fun playing with them, and Benjamin was able to give Papa his belated Father's Day gift that he made. Benjamin made picture frames for his Daddy, my dad and Brian's dad. They came out really nice - he colors the frames with marker, and then I go over it with the mosaic medium. After it dries clear the frame looks like it was decorated with mosaic tiles - it's really neat!!

Last night we went to the opening ceremonies for the Pickerington Relay for Life. We were so happy to see Benjamin's little friend Ben Thomas who came to the event even after just having surgery yesterday morning to take out his port - like Benjamin's surgery last Friday to take out his tubes. He looks great!! We had never been to anything like that before, and I hope that we can attend every year from now on. All of the survivors were given purple t-shirts to wear, and the survivors kicked off the event by walking the first lap. A very sweet lady reached out her hand to Benjamin so he wouldn't have to walk out on the track by himself, and off they went. Benjamin fell (again!!) the other day going down the steps of our deck out back, and we weren't too sure how he was going to do on his lap. Just after he started out Brian said that maybe I should go out there with him because he looked like his leg was bothering him. We thought maybe I would need to carry him part way around the track. I hurried to catch up with him on the track, and he looked surprised to see me. I asked him if he needed some help, he said that he was fine, and then he started running!! That child is so fiercely independent - haha! I thought he might just jog a little ways, get tired, and then need my help, but he amazed us all. He ran the whole lap, waving at the people who were cheering all the survivors on along the way. Then the second lap was for the survivors and their caregivers so I stayed on the track with Benjamin, and Brian joined us out there. Benjamin took off running again, and he ran the whole second lap as well - he ran half a mile!! We couldn't believe it! He looked so cute chugging along, and the people at the front carrying the banner told him to go out ahead of them, and he led the way. My eyes were teared up the whole time, and I wasn't the only one. It was very moving anyway to see all the survivors out there walking their laps, and it was so touching to see our Benjamin and Ben Thomas because they were by far the youngest survivors there. I didn't even see any other children. That was pretty overwhelming too. No one should have to go through cancer, and I think it really gets to people to see such young children. We couldn't believe the determination Benjamin showed not only to be there to walk his laps, but to run them! He's barely had the energy to do short bike rides, so running for half a mile was unbelievable! We were so proud of him and Ben Thomas!

I probably won't be updating again until we are back home from our trip, but I hope to have lots of wonderful stories to share from his trip. He can't believe the day is almost here, and he's running around here right now packing things in his back-pack to keep him busy on the plane.

Thank you so much for checking in on Benjamin and for remembering him in your prayers.

Love, Anne

Wednesday, June 18, 2003 11:08 AM CDT

Hi everyone!

I'm sorry it has been so long since I've updated - I had planned to update Benjamin's page after his surgery last Friday, but we've been having some problems with our phone line so I was unable to get online for some time. Anyway, the problem is fixed, and we're back in business.

Benjamin had his surgery to remove his tubies last Friday, and everything went just fine! My parents came down to take care of the baby for me so I could stay with Benjamin. Brian had to work - he's saving all the time he can for Benjamin's Disney trip. I've never seen a person so psyched up to have surgery - he knew that once those tubes came out he could swim again. Because the procedure was so short he didn't have to be under for long, and thankfully he woke up from this the best he's come out of any procedure. They called for me to come up to the recovery room, though, which I knew meant that something was going on with him. I was called to the recovery room at The James Cancer Hospital at OSU every day after Benjamin came out of sedation for his radiation. He didn't react well at all to the type of sedation they had to use there so consequently every day he woke up screaming at everyone, throwing anything he could get his hands on, and hitting whoever got close to him. Thank God he doesn't remember any of it - he would be so embarassed! This behavior is not like him at all! Don't get me wrong - I know his behavior isn't perfect, but he's never been a hitter! The nurses there told me that the kids that have this type of reaction curse at everyone, and I shouldn't be embarassed. It was hard not to be embarassed, though, when he was screaming at the top of his lungs that "Mommy is a poopy-head!" I was just very thankful that he didn't know any swear words - haha! I thought that when I got to the recovery room at Children's on Friday that I was going to be greeted with a similar scene, but that wasn't the case at all. He woke up fine, but he was just very scared because he hadn't expected to feel the pain in his chest where the tubes had been removed. They were in the process of giving him morphine as I arrived, and once he calmed down he was fine. The poor little guy had been crying so hard, though, that there was a puddle of tears on his pillow. We didn't have to stay long at all once he was brought back to his room downstairs at Outpatient Surgery, and we were on our way home just before 10:00am. He felt so good that he even went to a movie with his Daddy when Brian came home from work. Everything caught up with him Friday night, though, and he fell asleep when he got home from the movies. The best thing for him was on Sat. night when he got to take a real shower for the first time in over a year! He was so cute! He stayed in there until he ran out the hot water - haha! When he came out he had the biggest grin on his face, and he said that it felt so good to get wet! He's allowed to have regular baths and showers now, and on Friday he's allowed to swim again. I let him play outside in the sprinkler day before yesterday, and the look of joy on his face was priceless! Its amazing how differently we look at things now - I never realized how much I missed the simple playtime activities like running through the sprinkler! Zachary even got in on the act - his first time in the sprinkler! They had a ball together!

I hope everyone had a nice Father's Day weekend! I got to see my Dad the day before since he and my Mom were down for a couple days to visit and help with "Zachary Duty" as we call it when we're at the hospital. Benjamin and Brian went fishing on Sunday morning to spend a little "boy time" together. They didn't catch anything, except a little seaweed according to Benjamin, but it was fun anyway! Benjamin made presents for his Daddy, and for both of his grandpas. He was able to give my Dad his gift, and he can give Papa Jones his gift this weekend when Brian's parents come down to visit. They're coming to visit on Friday, and we're looking forward to seeing them!

This weekend is the Relay for Life here in Pickerington to raise money to fight cancer. We're going over on Friday night to the opening ceremonies and Benjamin is going to walk in the opening lap - the Survivors Lap. His strength and endurance are building bit by bit every day so I hope he can do the whole lap! The second lap is for survivors and their caregivers so Brian and I will walk with him for the second lap if he feels up to it. I have heard such wonderful things about this event and we're really looking forward to it! Its really going to be something to watch him take that first lap on his own - I get a little emotional every time I think about it, to be honest. He'd kill me if I cried at the track, though - haha! We've reached the age where Mommy (sometimes he switches to "Mom" instead of "Mommy", too) has to keep herself in check when we're out in public - no singing, no dancing, not saying anything embarassing to him, so I'm sure public displays of emotion would be a no-no! Haha! He makes a big show of telling me not to do embarassing things, but I can tell that secretly it doesn't bother him all that much - he's usually trying to hide a smile. He's really grown up so much this past year. To me there is a big difference between the ages of five and six. Five is still a little bit on the side of being a "baby", and six is like being a big kid. He had alot more growing up to do because of his situation as well.

Well, that's about all the news from here. Thank you so much for continuing to check in on Benjamin and for remembering him (and all the other kids) in your prayers!

Love, Anne

Thursday, June 12, 2003 2:20 PM CDT

Hi everyone!

It's another soggy day here in Ohio! There won't be any playing outside today, that's for sure. Benjamin did get outside and play yesterday, and Brian and I were so happy to see that, slowly but surely, Benjamin's strength is getting better. Benjamin has been so dedicated to doing his exercises with his weights - several times a day! He says that he wants to be big and strong like Daddy. Last evening I took the boys for a walk (Benjamin rode his bike) while Brian cut the grass, and while we still only went the same short distance, Benjamin was able to keep up a good pace the whole time. He didn't need a push off to get started either. Usually he needs our help to get started pedaling, and about half-way through he gets off his bike and walks it the rest of the way home. Then when we got home he wanted to play baseball out back. He's really trying so hard to be ready for t-ball in just a few weeks. He can really hit the ball still - he had many hits that went across our backyard and half-way through our neighbors back yard before the ball landed! We worked on his throwing the ball, too. The part that is going to be hardest for him is going to be the running, and I don't know how much we can do to make that better. His therapist told us that the stronger his legs get the better his balance will probably be. For him the hard parts will be keeping his balance and not running out of energy. He really wants to do this, though, so we're going to give it a try.

He had lots of fun at his fishing clinic yesterday, but we didn't end up at a pond. The clinic was held at Gander Mountain (an outdoors shop), and we didn't go anywhere else to actually fish. The kids just learned the basics about fishing, got to have the run of the store to check out all the fishing equipment, and then everyone received a new fishing pole to take home with them. I was afraid that he was going to be disappointed because he didn't actually get to fish, but he wasn't at all. He had a ball! Getting a new fishing pole was a big deal for him, too! There is a great place to take kids fishing that is very closeby, so I think Brian is going to try to get him out there if our weather ever dries out.

Tomorrow morning we will be up and out of here bright and early (and I mean early!!!) for Benjamin's surgery to remove his tubies from his chest. His surgery is scheduled for 8:00am, but they want us to be there by 6:00am. That means a 5:00am (or earlier) wake-up call! When I told Benjamin that by breakfast time tomorrow the tubies would be gone he was stunned! I've been telling him the big day was coming up, but he didn' realize it was tomorrow. He said it feels like the tubies were just put in a few weeks ago. I can't believe it was a little over a year ago. I felt so intimidated by all the instructions I was given to care for the tubes so they wouldn't become clogged or infected. With no background in nursing, and still operating in basically a fog from the still fresh shock of the whole situation and a brand new baby, I felt overwhelmed. Boy, did we get a crash course in all kinds of medical care - the tubies, TPN's (his overnight feeding through the tubies), his NJ-tube (the tube he had in his nose for feedings after he could no longer continue on the TPN's), giving Benjamin daily shots at home, etc... I remember we all looked pretty dazed for awhile as we adjusted to this new situation. Here we are a little over a year later - it is still amazing to me the difference in one years time.

Well, I will probably update more later or this weekend sometime after he has his surgery. Please keep him in your prayers still, and please remember all the other little ones out there, too, who are going through the same thing. Thank you so much!

Love, Anne

Tuesday, June 10, 2003 4:24 PM CDT

Hi everyone!

I hope everyone had a nice weekend - we had so much fun in Ashtabula! Benjamin and his cousin, Ashley, had lots of fun digging in the sand at Gramma Jones' beach (our families live in Ashtabula - right on Lake Erie, and Brian's parents live about 150 yards from the shore). They played and played together and even had a sleepover together with Gramma and Papa Jones. The kids had a great time visiting with everyone!

We came home on Sunday, and on Monday Benjamin had his first golf lesson. There are only five children in the class, and Brian and I were impressed with how the instructor is perfectly suited to working with kids. He is very patient and soft-spoken, and he provided the kids with lots of encouragement. Benjamin tried so hard and he really did pretty well. They learned first about etiquette - like talking quietly, never running, and not standing on your clubs - the parents got a kick out of listening to all of this. They practiced putting, and then we all moved over to the driving range so the kids could hit the balls. The instructor was able to give the kids alot of one-on-one time since the class is so small. He was trying to help Benjamin with his grip on the club and to adjust his hand positioning - Benjamin was holding onto the club so tightly he joked that he wouldn't want to arm wrestle Benjamin. As expected, Benjamin was pretty tired by the end of the hour, but when his instructor asked him to hit one more ball for him before he left Benjamin finished up by hitting the last ball the farthest he'd hit it yet. We can tell that while the progress in building his strength and stamina back up again is slow, it is getting better. Normally he would have finished up with just a short shot, but this time he finished pretty strong. The best part of it all was that Benjamin was back out there with the kids and having fun! We don't care what kind of golfer he is - we just want him to have some activities to look forward to that he enjoys. This session has one more class next Monday, but we told Benjamin that if he really likes it he can keep taking lessons one-on-one with the same instructor. We have been so lucky with the wonderful people who have been introduced into Benjamin's life throughout this whole experience. He has had to go through something so difficult, but he's been blessed to find the most patient and kind-hearted people to help him along the way.

Today was PT day with Kathy back at Children's, and boy, did that kid work hard today. She is really working with him to boost that stamina - he used ankle weights today and he did a lot of exercises! He was able to go the entire five minutes on the treadmill today. I know that five minutes doesn't sound like a very long time, but in the past he's jumped up there, run like a maniac and exhausted himself when he's only just a few minutes into the five minute goal time. Today he did a great job of pacing himself and concentrating on keeping his toes pointing forward (rather than turning out) the whole five minutes. Brian picked up ankle weights today so we can work more with him at home and Kathy gave us some exercises to work on. For the rest of this month she will meet once a week with him, and then in July she will have him come in twice a week. As of right now they're not recommending for him to take P.E. with his class in first grade - they don't feel it would be safe for him due to his balance issues and his lack of strength. However, they said that it isn't written is stone, and if he's alot stronger by the end of the summer then he might be able to be in the class. If it is safe for him we'd like to have included in everything the rest of his class is doing. We don't want him to feel left out, but if they tell us its just not a good idea then we will completely respect that. He's been through too much to just be thrown back into something he's not prepared for. He's really motivated so I wouldn't be surprised by anything he accomplishes - he has been doing more exercises with his weights as I'm typing and he keeps coming over so I can feel his new muscles.

Benjamin also asked to sign up for the fishing clinic (his golf lessons and the fishing clinic are offered by Pickerington Parks and Recs) and that meets one time only and it is tomorrow morning. At the time Brian went to sign him up I was thinking that Brian would put him in the Sat. morning class, but that didn't work out. So it looks like tomorrow morning at 10:00am Benjamin, Zachary and I will be going fishing! I havn't been fishing in years - my Dad used to take me fishing at my Great-Grandpa's camp when I was little - but I'm looking forward to it! Having a one-year-old along for the fun should make life a little more interesting, but oh well. I was informed that I will be the "fish-taker-offer" - Benjamin's words.

My Mom is coming down on Thurs. to come in with us for Benjamin's surgery on Friday. The tubies are coming out!!!! While we all have looked forward to this for so long, it seems to have stirred up some fears in Benjamin that I had hoped he wouldn't think of for some time. He's never expressed worry about his tumor coming back. Of course he knows kids from the floor who have relapsed, but he never really put himself in that place. Yesterday he told me for the first time that he was afraid his tumor would come back. I asked him how long that had been bothering him, and he said that he was laying in bed thinking about it the night before. When I asked him what made him think of that he said that he's glad his tubies are coming out, but it made him worry about if they would have to go back in if his tumor ever came back. I wasn't naive enough to believe that he would never think of this happening to him, but I had just hoped he wouldn't put it all together for a long time. I told him that while usually once you're done with "the medicine" (as he calls the chemo) you're done, but sometimes people do have to have chemo again. I told him that he's having his MRI's very frequently so we would know right away this time if there's any problem. We do know a few people who were treated once for cancer, relapsed, went through treatment again, and are now fine - many years later and with no further problems. I think this has helped reassure him. We talked about concentrating on all the fun things he wants to do this summer and going into first grade, and I told him that we'll think about those things and leave the worrying for the doctors. I don't know if he's going to do that, but for now he seems at ease. I asked him if he'd like to talk about this some more with Tammy (one of the child psychologists at Children's), but he said that he wanted to talk about it with me. Oh well, its one more thing we'll get through in time.

Well, that's all the news from here. Thank you for stopping by to check in on Benjamin.

Love, Anne

Saturday, June 7, 2003 8:26 AM CDT

Hi everyone!

This message is coming from Ashtabula, OH - we're up here visiting this weekend. Brian's Mom's birthday is this weekend, and my Mom is retiring at the end of this school year so we stopped in for the year-end faculty party after graduation last night. What a nice thing it is to just decide we want to get away for the weekend, and then just pack up and do it. Its amazing how much I took that for granted before! We went almost a full year without going anywhere except Children's Hospital and The James Cancer Hospital at OSU so it feels like such a treat to jump in the car and take off. Benjamin loves to be able to visit with everybody without having to worry about his ANC count (if his counts are below 500 he can't go anywhere). There were so many activities that he had to miss out on, but he's definitely making up for it now. Last night he went to the driving range here with his Daddy and Uncle Tim, and he had the best time. He has his first golf lesson on Mon. afternoon so he's trying to get ready. His lessons are just in two sessions, but we think it will be so great for him! He's also going to a fishing clinic this coming week. All of these activities are offered through Pickerington Parks and Recs. - they had quite a variety this year!

I spoke with Benjamin's physical therapist, Kathy, on Friday before we left, and she is going to start meeting with him once a week again starting this week. She said that once July starts she may be able to increase that to more than once a week, and we all agree that this is probably a very good idea for him. He's still not walking quite right. He's says that his legs and ankles don't hurt him, but he walks like they do. My Mom and I were watching him walk this morning and she thought maybe its just become habit for him to walk that way. That's probably true because when I stop him and ask him why he's not bending his knee or if his leg is hurting he starts walking the right way again. His strength in his legs is nowhere near back yet so he could certainly benefit from walking on the treadmill and some of the other exercises and games that Kathy does with him at Children's. Our weather has just been so unpredictable that we havn't been able to get him outside consistently to have him exercise more. I worry about how much strength and stamina he will have when it comes time for t-ball in July, but I think its more important to just let him do it and give it his best shot. Its so important to him to be on the team! He has really missed playing with other kids! He's also excited because when you're on the team you get a jersey, a trophy, and there will be a big party at the end of the season to celebrate. He saw his Daddy's trophies at my in-laws' house, and he told us last night that he hopes someday he can have some trophies just like his Daddy.

Kathy was also talking about having Benjamin's left ankle checked out to see if he needs to have a custom-fitted brace made for when he's running around and playing outside. She said he wouldn't need to wear it all the time, but I think it will help prevent his reinjuring that ankle anymore - he's hurt it twice now in two months. He probably won't be too happy about wearing it to t-ball, but we told him that Daddy wears a knee-brace sometimes and that lots of athlete's have to do that for the same reason. He may just decide its a "cool" thing - who knows?!

Zachary is getting to be more of a big boy every day! He's all over the place and into everything. He's also talking more and more - he repeats whatever we say! The boys are having even more fun together the older Zachary's getting because he can play more. On the other side of that, he's also able to get ahold of more of Benjamin's toys - Zachary has already figured out what buttons to push that turn off Benjamin's Game Cube. I told Benjamin that Zachary is going to think his name is "Nozach!" because Benjamin has to spend a lot of time telling him "no Zach!"

Well, that's about all the news from here. I hope things are going well for all of you! Thank you for checking in on Benjamin! We appreciate it so much!

Love, Anne

Wednesday, June 4, 2003 9:47 PM CDT

Hi everyone!

It is pretty late so this will just be a quick update for now. Thanks to our friends and neighbors, the Thomas family, we finally have pictures posted on Benjamin's web page! Their son Benjamin is a fellow cancer fighter - he completed his protocol this past May and is doing great! They stopped over to play the other day and Ben's father, Jeff, took pictures of the kids and put the pictures on a special program that shrinks the photos for us. We are so happy to finally have pictures of our little guy on his page - thank you so much, Jeff!! The kids had so much fun running around and playing, and its so nice that the boys can get together and play at home in their own backyards now instead of at the hospital.

I also wanted to update because today I met with one of the psychologists from Children's to get the results of Benjamin's neuro/psych tests. Overall, Dr. Beetar said the results were mostly positive. I won't go into lots of details, but the areas of weakness were pretty much what we expected. Benjamin will probably have some problems with visual/spacial activities. As an example, Dr. Beetar said that if Benjamin sees a picture of a graph he may have difficulty interpreting the graph and also in transferring the picture of the graph onto another paper. This means he will probably be more of an auditory learner. He also suggested that Benjamin have an OT assessment through the school to see if he could receive more occupational therapy at school. He told us that he should do fine in the classroom, though, as long as he sits near the teacher and can limit his outside distractions. The most important thing for Brian and me to know was that he can and will learn and do well in school, and we can expect that he should be able to go on to college and do well there as well. We just want him to have all the options that he would have had before all this happened to him. He's going to need extra help from us and probably from tutors, and he will probably need reminders to pay close attention, but the news overall was good, and he will be re-evaluated next year at this time.

Thank you for continuing to check in on him and for praying for him!

Love, Anne

Monday, June 2, 2003 12:39 AM CDT

Hi everyone!

I hope everyone had a nice weekend! Our weekend down here was as close to normal a weekend we've had in I don't know how long. I went to a baby shower on Sat. for our friends' baby who we'd asked for prayers for many weeks ago. She had been born prematurely and stayed in the hospital for about two months. She is home now and doing wonderfully, and she came to her party! We are so happy for them that everything has gone so well their family! I realized at the party that this was the first time since before I'd had Zachary that I had been out on my own - no kids with me. Someone asked me how long I could be away from Zachary before he would need to eat again (still nursing), and I had absolutely no idea because I'd not been away from him for that much time. One of our very nice neighbors had watched the boys so Brian and I could get out of the house a couple of times, but since he was still in treatment we didn't stay away for very long. We appreciated it so much and it let us get a much needed break, but because of all the problems he'd had during treatment we didn't want to overstay. Now that things have settled down this was the first time I went out on my own. It was so much fun to visit with everyone, and I was so happy to hold Maggie and know that she's doing so well!

Yesterday Benjamin was invited to a birthday party for one of his friends (actually for Maggie's big sister), and it was the first time he'd been to the park since Olivia's party last year. That was the last party he went to before he got sick, and her party this year was his first one at the park since he's been off treatment. He looked forward to it all week and he had so much fun playing with his friends again! We had been to the clinic on Fri. and knew that his counts were good so he had a ball! He wore out pretty quickly which didn't surprise us, but while his energy was up he had fun. The only thing that happened was he fell at the park and re-twisted the left ankle that he'd hurt falling down the stairs at our house about two months ago. I called his PT therapist today, though, to ask about increasing his PT to once a week again. His energy runs out very quickly and I'm hoping that more therapy would help his endurance and stamina.

Today he's feeling much better - he said his ankle doesn't really hurt to walk on it. He certainly wouldn't let it stop him at all when his buddies Emily, Benjamin, Dillon, and Zoey came over to play. They all ran around out back, played on the swings, and had a big game of basketball with new rules - there was no out of bounds and you could shoot at any time whether it was your teams turn or not - haha!! Their son Benjamin played with our Benjamin quite a bit when they were admitted at the same times, and now that they've both completed their protocols they can play all summer too. He played quite a bit longer than he usually does so I'm hoping that maybe little by little that strength is building back up. After the amount of chemo he's had poured into him this past year I have to remember that he's not going to just bounce right back with no recuperation time at all. Playing outside with all his buddies has been great PT for him!! Its a real boost for his morale too!

Tonight we have our dinner with Sean and Jody - our representatives from the Make-a-Wish Organization. They told him to pick anywhere he'd like for his going-away dinner (before Disney), and he picked the Max and Irma's at Easton. They are a great couple - lots of fun! - and we're looking forward to getting together with them tonight. They will give us our packet with all the details and itinerary for Benjamin's Disney trip. I can't believe how quickly its coming up. Way back during some of the most grueling parts of Benjamin's treatment we would sit with him and daydream about all the things he could do when this medicine is done and he's at Disney. Looking forward to that really helped him through some hard times. Now fast forward and here we are getting ready to go soon - I'm so excited for him!!

Well, that's about all the news from here in Columbus. Benjamin has his follow-up neuro/psych report this Wed., so we'll back up to Children's for that. He was so tired when he took that exam (he had just finished chemo) so I don't know what to expect from the results, but Dr. Olshefski (Benjamin's oncologist) told me that they do have a curve in there for just such reasons. These results will have alot to do with Benjamin's IEP for the fall when he starts first grade.

Thank you so much for checking in on Benjamin, and please remember him and all the other kids in your prayers!

Love, Anne

Friday, May 30, 2003 3:01 PM CDT

Hi everyone!

Benjamin had his last scheduled weekly clinic visit today! We are really going to miss the people up there who we have gotten to know and who took such wonderful care of Benjamin! I should say that we will miss seeing them every week because its not like we won't see them again. Benjamin will still be going there every three months after his scheduled MRI's. The people up there are so caring and they do so much to make each child feel special! I can't say enough good things about them! Everyone gave him a big hug and wished him well until they see him again at the end of the summer (as long as Benjamin isn't having any problems in the meantime).

Before his physical Benjamin had his last audiogram for awhile. Dr. Olshefski said he probably won't ask for another one for about 6 - 9 months. Benjamin amused DeeDee (the audiologist who did his testing) by telling me over the microphone to "stay out of the room!" He has to sit inside this encased area in the room where the testing is done. All sounds from the outside are blocked out and he communicates with them and they communicate with him by microphones and headsets. The sound of his little voice sternly telling me to "stay out" (he's Mr. Independence!) and then at the end of the test telling me "that's a good girl for staying out!" had the two of us rolling. I explained to her that in the beginning he wouldn't do anything asked of him unless Brian and I were right by his side, and even then he fought what was asked of him tooth and nail. Then a couple of months into treatment he had a real turn-around and suddenly he just dove right into whatever they needed him to do and he insisted on doing things on his own. She just cracked up! He's had a little further hearing loss in the high pitch frequency range from the last time, but there is still no need for hearing aids or anything like that. She also said that since the protocol is completed his hearing should stablize. Of course because of the cranial radiation he received its still possible down the road that he could lose more hearing, but at his last audiogram we were told that even at that, the kids who have come back in ten years down the road with that problem havn't completely lost all hearing. They just need hearing aids - we can handle that!!

After the audiogram we went back for Benjamin's physical and to go over any last questions we had. Dr. Olshefski was really pleased with Benjamin's MRI results - he said they were just what they wanted to see! Now Benjamin is on the schedule for having MRI's every three months for at least 2 or 3 years and then it might stretch out to every 6 months. Everything looks good to this point, but we can't say that this is over. He said that once we get to five years out from this we can breathe a sigh of relief. That is a time that I can't wait to be here and I pray that everything goes OK and we get there. I certainly don't want to wish time away, though, I want to enjoy all the time in between as well! We are so grateful to be at this point!

Thank you all for checking in on Benjamin and I will keep updating his page because he still has quite a few appt's and follow-ups coming up. Thank you, again, for all of your prayers!

Love, Anne

Thursday, May 29, 2003 7:17 PM CDT

Hi everyone!

Tomorrow is Benjamin's last scheduled weekly clinic appointment. He will still have to go back for visits, but they will now be every three months as long as he's doing alright. This whole thing kind of crept up on us. His nurse, Suzanne, always gives us a handful of appt. cards with his whole month filled in for times. We have been so used to taking everything one day at a time and then one week at a time for his appointments that I didn't even realize that after the MRI he had yesterday this next clinic visit was the last scheduled one. How strange it will be not to have a doctor visit every week! We will still be up at Children's alot though for Benjamin's PT and OT which has been increased to help boost his strength and stamina. Right now Benjamin is working on something special for Suzanne to give to her tomorrow.

Benjamin is finally acting more like himself again. He ended up receiving the maximum dose of sedation possible for his weight yesterday, and boy did it take alot of time to get it worked out of his system. Its never taken this long before. He was really tired and fuzzy all the rest of the day yesterday, and he slept well last night. Then this morning when he got up he was still having some vision problems (closing his eye again to focus and saying things looked fuzzy). Today was his last day of school for the week and he had a hard time focusing on his work - he was still pretty scattered. This worried me a little bit and I called Suzanne (his nurse), and she called us back this afternoon as did Benjamin's nurse from the MRI yesterday. We were very relieved to hear that given the amount of sedation he took yesterday it was not at all unusual for him to be still a little out of it today. They said that if he wasn't back to himself by tomorrow, though, I should call back. I'm very glad that tomorrow we'll be seeing them anyway so that's one less thing to worry about.

Other than that, not too much is new here. Thank you so much for all the messages, e-mails and phone calls from everyone about Benjamin's scans yesterday!! That support and encouragement means so much to all of us! Please keep Benjamin and all of the other little kids fighting this in your prayers!

Love, Anne

Wednesday, May 28, 2003 12:05 AM CDT

Hi everyone!

I just wanted to send out a quick update - Benjamin had his first follow-up MRI since completing treatment and everything was clean!!! We were up and out of here very early this morning. Benjamin didn't get to eat breakfast so needless to say he had a huge "brunch" when we got home-pancakes from Bob Evans to celebrate! Benjamin was sedated for the MRI, but this was his last time using sedation. They wanted him to try it without sedation this time, but he didn't go for it. However, when he found out that when he comes back for his next MRI he won't have "tubies" anymore and to receive the sedation would require a needle poke he quickly agreed to go without it the next time. I think he would probably do just fine without the sedation, but I wasn't going to push him on it this morning. He's had to do so many things that he hasn't wanted to do that we didn't want to force him to go without it since he'd been counting on "sleepy medicine" for this test. Now he knows in advance for the next time and I think that's better for him. It will be a long time to hold still (an hour and 15 minutes) but I'm sure he can do it if we play some music and I read aloud to him. I told him that I had an MRI on my shoulder when I was in high school and that I can promise him it doesn't hurt a bit.

He was a little anxious this morning about getting good results (another reason we didn't push for him going without sedation), but not because he was worried about the tumor being back. He was just concerned about making sure those tubies would be coming out so he can go swimming. He really doesn't get the whole significance of the whole thing when we come back in for CT scans or MRI's. I've told him that he's getting pictures of his brain and spine to make sure everything is looking good, but I try to shift more of the focus onto his shunt. I tell him that they have to make sure his shunt is doing what its supposed to (which they do check on) because to him that's not a scary thing. I'm so glad that he doesn't focus on whether or not the tumor is back. As he gets older and understands more he will wonder about that I'm sure, but I'm hoping that since this is something that he doesn't really have much memory of not dealing with that it might not be as scary for him as it would be for a grown up. To him this is just what has become normal for him. He kept saying over and over again "I hope my tests are OK!" I was so happy to tell him as soon as he came out from the room that those tubies are coming out! He was so out of it that I know he couldn't have understood me, but it felt so good to say it out loud.

He's still pretty wobbley from all the sedation. They had to give him the maximum dose for his weight because he has such a high tolerance. He's the same way with alot of medications. When he has morphine it usually takes quite a bit to have an effect on him. When he first had his surgery last year and really needed morphine badly the nurses told us that most people would be on the floor with the amount of morphine he had in him, but for him it would wear off hours before it was supposed to. He woke up part way through the MRI (that happened the last time, too), so they had to give him the last bit of sedation. For hours afterwards he has a little trouble seeing clearly and he stumbles a bit, but we're just keeping him resting (make that "trying" to keep him resting) for a while this afternoon until it works its way out of him.

It was so great that Brian had the day off and that we could wait together! The waiting is the worst part of it all! We walked around the hospital with the baby until it was time for Benjamin to come out. We were so happy to see Benjamin's neurosurgeon, Dr. Kosnic, as we walked back in to wait for Benjamin. He is a wonderful surgeon!! Everyone has told us such tremendous things about him, and he put both of us at ease last May as we were getting ready for our son to have brain surgery. It is such a terrifying prospect to confront, and he spoke with such confidence and reassurance that we knew Benjamin was with the right doctor. We thought we would have to wait awhile to have the results read, but Dr. Kosnic read the scans himself as soon as he came in. We were both surprised when he we heard him come walking up behind us saying "the scans look great!" Brian and I both looked around us like we wondered who he was talking to. We asked "Benjamin's scans?" He had a huge grin on his face as he shook our hands and said again "Benjamin's scans look great!" I can't even describe the feeling of relief! Thank you so much for all of your extra prayers for Benjamin!! Brian and I appreciate it so much!

As for the rest of the week and month Benjamin has a lot to look forward to. We have his clinic appt. on Friday, and he was invited to another birthday party this weekend. He's so excited! He's got his golf lessons starting in about a week and a half (its just two one hour sessions), he has a fishing clinic after that, and his going away dinner with the couple who are our representatives for Make-a-Wish for his Disney trip. They are wonderful people and they are expecting their first baby shortly. Then he has surgery to remove the tubies June 13th, and after a little over a week to heal he's off on his trip to Disney! Brian and I are hoping that Benjamin has a wonderful summer this year and we would do anything to help him make up for last summer (and this past year)! Thank you to all of you who continue to send him messages and e-mails and for keeping him in your prayers! We're really touched by all the care and concern that all of our family, friends, and new friends from the hospital and the internet have shown to him.

Love, Anne

Tuesday, May 27, 2003 5:08 PM CDT

Hi everyone!

I hope everyone had a nice holiday weekend! Brian had an extra long weekend (Fri. off from his little softball injury) so we really enjoyed the time together! The weather finally cooperated so the kids were able to play outside in the sandbox, on the swings, a little baseball, and even a bike ride. It was great to be outside after the yucky weather we've had for days.

Benjamin had PT and OT today, and he was really happy to get back to Children's and see his therapists Kathy and Karen. Since the weather was so good he even got to play outside on the rooftop playground with Kathy. Children's Hospital has a really nice playground on the roof of the third floor, and Benjamin is fascinated with it. Because Benjamin's strength and stamina are slow to come back therapy sessions are being put back to the every other week schedule. He's doing well, but when he does activities he starts off strong and goes like crazy, and then he tires out quickly. We're trying to get him to pace himself more until his stamina has built back up again, but try to convince a six-year-old boy to slow down - haha! His balance is still off, too, so we've got to get that worked on. We're hoping that with the extra therapy and t-ball and swimming lessons this summer his strength will come back quicker. He's also going to be evaluated for PT and OT through his school to see if he will get more therapy from the school. Kathy and Karen said that they will continue to work with him as well when that time comes if we'd like. I think this would be great for him since he's so comfortable with them. As of right now he may not be able to take phys.ed. with his class because it wouldn't be safe for him given his current strength and stamina. They told me that by the end of the summer this could change, though, so I'll put that out of my mind until then.

Tomorrow is Benjamin's first MRI since completing his protocol. We have to be there at 8:00am and it should start at 9:00am. Because this one is going to be of his brain and spine (his last one was only of the brain) he will be asleep longer. Then we have to go up to the clinic to wait for the results once Benjamin's awake enough to leave the recovery area. I just hate the waiting!!!! Brian took the day off from work tomorrow so I'm glad that we can wait together at least. If everything goes well then we go back in June 13th to have his tubies removed. Please say a prayer for Benjamin tonight that everything will go well tomorrow!!!!!

I hate to cut this short, but we've got a lot to get done around here tonight, and my time on the computer is running out - Zachary is staring at me and "fake" crying - haha! Thank you for checking in on Benjamin and for remembering him in your prayers!

Love, Anne

Friday, May 23, 2003 3:53 PM CDT

Hi everyone!

I just wanted to add a quick update to let you know how Benjamin's week has ended. He is so excited because its a long weekend and that means a day off for Daddy. We got an extra day off with Daddy today because unfortunately Brian got hurt at his softball game last night. Its nothing serious at all, he just pulled a muscle in his chest pretty badly and was unable to sleep last night because every time he tossed and turned he woke up from the pain. We now have a four-day weekend with Daddy, but Brian had to get that extra day the hard way.

Today the four of us went for Benjamin's clinic appt., and it was a very quick day! Benjamin didn't need a physical today so we only had to do the vitals and a blood draw. Benjamin has gained a little more weight on his own, and he is so close to hitting the 50 lbs. mark (his own personal goal for some reason - haha!) Today he was 49.6 lbs! He's also still gaining all on his own - he's been off the Megace for several weeks now. He had been off it, and then back on when his appetite dipped, and then when his appetite picked back up again we stopped the medicine again. His counts havn't started on their way back up yet, we were hoping that last week would have been its lowest point and that this week would see the counts climbing, but its not time yet. Maybe next week! The rest of his counts were dropped, but thankfully not too low. We also found out today that his surgery to remove his tubies has been scheduled for June 14th (provided his MRI on Wed. comes out clean)!!! Suzanne, Benjamin's nurse practitioner, said that it should take about a week for the spot to be all healed up so he will be ready just in time for his trip to Disney! Boy, did his little face light up when he heard that!

He's also very excited because he is all signed up for T-ball at the YMCA. He wanted to play so badly last summer, but we had to pull him out because of how weak he was from just coming off of surgery. He was doing radiation through that time as well, and it just wasn't possible for him. The kids get a jersey and have an awards fun party at the end of the season so Benjamin is about beside himself. Right now we're waiting for Brian to get back from Pickerington Parks and Recs. because he went to sign Benjamin up for golf lessons (it meets on two Saturdays) and for a fishing clinic - boy, does this kid have plans! Hopefully the classes havn't closed out already. We just want him to thoroughly enjoy every minute of summer this year. After what he went through last summer (and this past year) he deserves to have a ball!

Well, that's about all the news that I can send out for now - Zachary is trying to "help" me type, and I'm typing most of this one handed - haha! I hope everyone has a great holiday weekend, and thank you for checking in on our little guy!

Love, Anne

Wednesday, May 21, 2003 2:02 PM CDT

Hi everyone!

I had Benjamin's page almost completely updated last night, and then the baby had a "diaper emergency." While I was taking care of that I heard "good-bye!" and my connection was lost, so here we go again.

Benjamin had his eye appt. yesterday, and we came away from it with much more good news than bad news - I love days like that! First of all we found out that from all the pressure from the build up of fluid in his brain from the time before diagnosis and through the time when he had the shunt surgery (to drain the fluid that was again building up causing enormous pressure) permanent damage was done to some of the optic nerves. However, the doctor said that it takes damage to about 50% or more of the nerves to cause vision problems, and we are so fortunate that only about 5% of Benjamin's optic nerves sustained this damage. He told us that actually Benjamin's vision is quite good. The problems he's having (double vision peripherally, one eye tracking slower than the other & closing one eye while doing his schoolwork) are related to the part of his brain that has taken the most trauma. He said that the part of the brain, the cerebellum, that controls his body movements (which are still a little wobbley sometimes) is the same part that controls whether his eyes are working together or are a little wobbley. This part took all the hits from where the tumor was located, where the pressure built up, where the surgery was done, and where the radiation was focused. The doctor told me that if you're going to "hurt" any part of the brain, though, this is the part to "hurt." He said that for some reason that they're not really sure of, whether the cells regenerate or whether other ones step in to compensate, this part of the brain will get better. I can't tell you how encouraging it was to hear this! He said that Benjamin's problems are probably at their worst now and that over the next 6 to 18 months we should see improvements! He said that Benjamin doesn't actually have trouble seeing, he just is having a problem getting both eyes working together to focus on what he's seeing and then inputing that info. This is something he said we need to let his teachers know about so that Benjamin can be given extra time on visual tasks (at least for the time being until the improvements happen), such as reading, because Benjamin can read just fine - he just needs to give his eyes the extra time to adjust to what he's seeing. I know that this doesn't mean that Benjamin is out of the woods in terms of whether he will develop learning disabilities from the cranial radiation, but its so nice to know that for now anyway things are alright. I was beginning to really worry about why he was suddenly having trouble reading words that he's known for at least a year and a half. The doctor also said that at this time Benjamin doesn't need glasses either. I thought for sure we were going to walk out of there with glasses, but he said that Benjamin's vision is really fine! What a great day it was to walk out of the hospital with so much good news!

Benjamin and Zachary are both doing fine. The baby is getting so big, and we really have to watch our mouths around him now -haha! - as he is picking up on so many new words and repeating what we say. He and Benjamin are able to play together more and more all the time since Zachary can do so much more now. Right now they are playing some kind of game where they hide under Zachary's big Elmo blanket. Benjamin is debating whether or not he wants to share a room with him. He asked us the other night if we could move the crib into his room. I think he wants to have the two of them share Benjamin's room and then turn Zachary's room into a playroom. We'll see how this all turns out.

Unfortunately this week we've heard that two of the families we met at Children's received very difficult news on recent test results. Please remember all these children in your prayers. All of them are such fighters and every prayer helps.

We have one more day to go at the hospital this week. Friday is clinic day again - Benjamin's first time back in two weeks. Hopefully his counts will be good and it will be a good day! Next week will be a stressful one - its MRI time again. His MRI is scheduled for Wed. morning, and if everything looks good then he will have surgery the next week to take out the tubies. I'm trying not to get too worried about next week yet, but the knots in my stomach are starting a little bit. He asks sometimes if he will have to "do the medicine again," and I try to tell him that hopefully not, but that's why they keep doing the scans so often. This way if something started again they would find it much sooner than how it was last time. He doesn't seem to dwell on it, so I don't think its something that really worries him alot. He's much more focused on his upcoming Disney trip and all the plans he's made for this summer!

Take care and thank you for looking in on Benjamin! Thank you for keeping him and all the other kids in your prayers!

Love, Anne

Sunday, May 18, 2003 7:25 PM CDT

Hi everyone!

We're back home after spending a wonderful week away in Ashtabula! Benjamin and Zachary had so much fun visiting with all the family up there, and it was so nice not to think so much about doctor appts. and illness. Benjamin got to do many things that are easy to take for granted, but are things that he hasn't been able to do in ages. He went to the mall, the beach ( not to swim, but to walk on the sand and pick up rocks and shells), spent the night all by himself at his grandparents, and visited my Mom at her school where she teaches. It was hard to leave, but we know that another trip is already planned for in just a few weeks.

Hopefully this will be a relatively quiet week. Benjamin has an eye appt. scheduled because we've noticed he closes one eye sometimes when he's doing his schoolwork. We already know that eye has some weakness because when the doctor asks him to follow his finger with his eyes, one of Benjamin's eyes tracks slower than the other one. Maybe its time for glasses - we'll find out in a few days. We also need to reschedule his PT/OT appts. for this week since we were out of town last week. He always enjoys these appts, and I like visiting with his therapists as well. Its back to the clinic this Friday - last Fri. was the first Fri. that we didn't have to go in for about a year. He always likes visiting with everyone there, but it was nice not to have to get the kids up and ready and out the door last Fri. Very often that is the one day of the week when it either snows or rains, too, so it was a nice little break. As long as this next MRI (May 28th) comes out OK then Benjamin won't have too many more clinic appts. for awhile. He will go every 3 months after the tubies come out. They are supposed to come out the week after the MRI as long as the scans are clear. What a relief that will be for all of us, but especially for him! He is looking forward to swimming, and I'm looking forward to letting him take a regular bath or shower without worry of his dressing getting wet. It will be wonderful for him not to deal with weekly dressing changes anymore either. He's very good for it, but I know it hurts him when the tape comes off his skin. He has very sensitive skin anyway, but pulling tape off him is quite painful. He told me my dressing changes skills have improved, though, since the beginning - haha!

The next big things Benjamin is looking forward to are the tubies coming out, his next visit to Ashtabula, and his upcoming Disney trip. We talked about the Disney trip quite a bit on our ride home today. He has all kinds of ideas and plans for his trip. I can't wait to see him running all over the place and having the best time. He's also got some plans for this summer here in town. He wants to sign up for t-ball (the sign-ups are this week, I believe), and we also found out about some activities through Pickerington Parks and Recreations. He's hoping to take golf lessons (his big goal is to go golfing with his Daddy) and he'd like to sign up for Music, Movement, and Me. We thought this would be great for him to be around other kids his age, and it would be extra physical therapy for him. I just hope that he gets to do everything this summer that he missed out on last year - he deserves a great summer! I must admit I'm starting to get nervous about the next MRI, but the ones that scare me more are the ones coming later. Those worry me more because he will be further out from his last chemo treatment. Everyone tells me that the more time that goes by things will get easier so I will trust in that. Right now we're just thrilled with sitting back and watching him step back into regular life.

Thank you for all of your prayers for Benjamin and the other kids who are going through this. We can feel your support and encouragement.

Love, Anne

Thursday, May 15, 2003 3:00 PM CDT

Hi everyone!

One year ago today Benjamin was diagnosed - I can't believe a whole year has come and gone! He is having a wonderful week up here in Ashtabula, and we feel so incredibly lucky and blessed to have him here with us. I can't say that I havn't had any weird flashback moments to things that were happening a year ago today, but for the most part today has felt really good. I have dreaded this day for so long, and I have told my Mom lots of times that while I used to love the month of May and the arrival of spring, I don't like this month anymore. Now that the day is finally here and we're getting past it, its not so bad. Maybe the further we get away from this whole experience May 15th won't make me shudder. As long as every May 15th I have Benjamin then what could be wrong with that day! When I woke up this morning it was almost at the exact same time that Brian called me last year from the hospital to tell me that they had run the CT scan and found a small tumor. I won't relive the whole horror of that morning for you, but as you can imagine it was agonizing. How sweet it was this morning to look in on Benjamin and see him sleeping peacefully in his bed. That's everything we could have hoped for. He spent this day playing with his baby brother, visiting with all of his grandparents, and even taking a little trip down to my Mom's high school to visit and "chalk" on her boards. A year ago this time we were in such shock and grief, and I didn't see a light at the end of the long tunnel of treatment ahead. That shock was the only thing that got us through the day of diagnosis and the day of surgery that followed the next morning. I had no time to process what was happening or to think ahead for how many things could go wrong during surgery. All I felt was numbness and like I'd been punched in the stomach so hard that I couldn't catch my breath. That shock was a blessing for our self-preservation, though. It was only after the surgery was over and a few days had gone by before I realized all of the things that could have happened to him with that kind of surgery. It is amazing that he has come away from it in such remarkable condition! We certainly have God and all of Benjamin's incredible doctors, nurses, and other caregivers to thank for that. When I replay all the events from the past year in my mind its sometimes hard to believe that it even happened. All I know is that I'm so grateful to be a whole year away from that horrible day, and I'm so grateful to have both of my boys!

We wouldn't have made it through this year without all of the love and support that has been shown to our whole family from so many people from all over. Our family has been there through it all and helped us more than they can imagine. I've appreciated all of the calls and e-mails every week from such great friends and family members who have picked my spirits up at some of the hardest times. Just knowing that there are so many people out there (some who have never even met Benjamin) who care has touched me. Thank you so much for praying for him and for continuing to pray for him as we start the next phase of this - the scans and follow-ups. I will keep updating his page to let people follow his progress.

Love, Anne

Monday, May 12, 2003 4:35 PM CDT

Hi everyone!

The boys and I are still in Ashtabula, and we're having a great get-away! The weather is not so nice, but we're having fun with all of the family here. Benjamin had lots of fun this weekend playing with his cousin, Ashley, and they even had a sleepover at Gramma and Papa Jones' house on Sat. night. This was his first sleepover since he had been diagnosed last year, and he was so proud of himself that he did it. He really is back to his little independent self! We don't have too much planned for the week - we're just taking each day and seeing how much energy Benjamin has. He is planning to go to either a playground or Lake Shore Park with Ashley in the next day or two. Benjamin loves the park because there is a duck pond, and every year we've always brought him down there with a loaf of bread to feed the ducks. He gets the biggest kick out of that! At this time of year there are always lots of babies, too, and he loves to see them paddling along behind their mommies.

Brian is on his business trip for the next few days, and he will be back for us later on this week. Benjamin really misses his Daddy, but all of his activities up here have been great for him. He was invited to a birthday party on Sat., and he can't wait to go play. We'll also be visiting with all of his grandparents, aunts, uncles, and cousin, too. He'd like to go to the high school where my Mom teaches to visit her, see the "big kids" and "chalk" on her board. The kids at the school have been so wonderful to him, sending him messages and praying for him every day. He likes to visit there and see what's going on. There are usually sports practices going on, and he likes to watch that. When we came up to visit at Christmas time the girls basketball coach (a friend Brian and I went to school with) let Benjamin come in and shoot around. Hopefully a trip to the school will be possible this week because this is my Mom's last year teaching, too. By the time we come back again school will be out.

I hope everyone had a nice Mother's Day - I know it was such a special day for us. We spent part of the day with Brian's side of the family and the other part of the day with my side of the family. The only part that was too bad was that Brian had to head back to Columbus to get ready for his trip.

That's about all the news from us for now. This is the first week that Benjamin doesn't have a clinic appt! That will be the strangest thing to wake up on Fri. and know that we don't have anywhere to go. Suzanne, his nurse practitioner, said that since Benjamin's counts have remained so good throughout this last part of treatment (since switching protocols) he could skip this week's appt. and just have fun with his family. Unless he were to start bruising or become extremely pale (meaning that his platelets were low and he needed a tranfusion) he is free and clear this Friday! That was such great news because we really needed this week of rest and relaxation. When we're here things also feel so normal, too. It almost feels like this past year never happened - its a nice escape! Benjamin is working very hard on school papers while we're here, and he's doing extra exercises for PT, too. He's on a "working vacation" - haha!

Love, Anne

Friday, May 9, 2003 9:26 PM CDT

Hi everyone!

Tonight I'm writing from my parents' house in Ashtabula, OH. After Benjamin's clinic appt. today we left for "home." This is where Brian and I grew up, and all of our families are here (for those of you who only know us from the internet). After the weekend Brian will head back and the boys and I are spending the week up here - we have been looking forward to this get-away for awhile! After the very busy last two weeks of appointments for Benjamin he can't wait to visit all of his grandparents, cousin, aunts and uncles, and to visit some of the kids he knows up here. He has missed playing with the other kids so much so he's ready to catch up on that. He was invited to a birthday party while we're here, and he's been invited to some parties at home and for visits with some our out of town friends. This kid is ready to party!!

Benjamin's clinic appt. this morning went very well today. He has gained a little more weight on his own - he is getting closer and closer to 50 lbs. all the time (that is his own personal goal for some reason - haha!) His blood counts had dropped (which is expected), but they're still good enough for him to be able to mix and mingle this week, and that's all that's important to him. The big news of the day is that Benjamin had his last dose of Vincristine (chemo) for the protocol. He had his last admission two weeks ago, but for each round of chemo he takes three types of chemo and one of those types (the Vincristine) is taken in three doses over three Fridays. Today was the last Friday!!! Now we just have to keep those little legs of his moving to work out the effects of the Vincristine, and our guy is back in business. He wants to play t-ball this summer so much - we're looking into signing him up for the teams playing at the YMCA. Benjamin was admitted and started his very first chemo last May 31st - I can't believe he's come full circle. Tomorrow we're going to the store for him to pick out a toy as his present for being all done - he's been thinking and planning about this all day.

Thank you to all of you who have followed Benjamin's progress (both for those who read about him on his web page and for those who knew him before and have followed him right from the very beginning), and thank you for all of your support for him and for our whole family. It has meant so much to us to have so many people genuinely care about him and pray for his recovery. He's been down a long road, and he still has quite a ways to go, but we have all been encouraged by all of the well wishes, cards, gifts, phone calls, and friends (both old friends and new friends) who have stopped by his web page. We're so grateful to our families especially who have rallied around all of us and have been there for us in every way. Thank you for all of your prayers for Benjamin, and please keep him in your prayers as he still has many years of scans and follow-ups to come. We will keep updating his page to let you know how his progress is continuing.

We hope everyone has a wonderful Mother's Day weekend! I'm so grateful to have my boys, and we're looking forward to spending this special weekend with both of our moms and my grandma.

Love, Anne

Thursday, May 8, 2003 1:23 PM CDT

Hi everyone!

Well, its been an awfully busy and tiring week again here, and we're all glad to see Friday coming around. Benjamin has been extremely tired this week, and it has had me a little bit worried, but he will have a clinic appt. tomorrow and he will be checked out. I talked with his nurse practitioner a couple of times this week, and after discussing it with his doctor, they felt it was fine to wait to see him until tomorrow. Benjamin had the second part of his neuro/psych test yesterday, and he really wasn't looking forward to it due to the fact that the first half had lasted for 3 hours. Fortunately the second part was only about an hour and a half, but we didn't know this going in. Partway through the test the doctor gave Benjamin a little break and came out to talk with me. He asked if Benjamin has ever had problems with impulse control because every time he was ready to start a new part of the testing with Benjamin he would just jump right in and start it without waiting for instructions. I was really surprised and I told him that we'd never seen him act that way (so far). After his test Benjamin had a tutoring session with Mrs. Brinda, and I asked her if she'd ever seen him exhibit that kind of behavior and she was just as stunned as I was. Come to find out, when I discussed the testing with Benjamin he told me that he was really tired and didn't want to be there a long time like last time (for the 3 hours) so he decided to hurry things along on his own. He thought if he just got right to it he could get the testing over with quickly. I was really relieved, and I can hardly wait to see how these test scores come out - haha! I really wish that he hadn't been scheduled to take the tests until he was further out from chemo because he has been so tired, but we were told that there is such a waiting list that we have to pretty much take what we can get.

Yesterday Benjamin did a few things that concerned me, but I can't tell if I'm more paranoid now because of all that has happened. When he came out from his test he told me that he had a headache in the back of his head. Those words strike fear in me and immediately take me back to last spring before he was diagnosed. Back then before the symptoms became more severe he would complain of "twinges" in the back of his head. Yesterday I asked him how bad his head hurt, and of course he said "its just a twinge." The headache didn't last long at all, and before that was how it started - these twinges that only lasted for about a minute. Then yesterday when I was going over his schoolwork from that day with him I noticed that he was making his lowercase a's backwards. He's never done that before, and he's known how to make that letter forever since its in his first name. Also when we went over his reading words he was getting stuck on words like "it." He's been reading words like that since before I had the baby and before he was diagnosed, so that made me a little bit nervous, too. They warned us that he is at risk for learning disabilities, and I don't know if we are at the beginning of that or what is going on. Of course my biggest worry is what if "its" back again. Then last night he fell asleep at 6:30 pm, woke up about an hour later and barely ate dinner, and wanted to go straight up to bed. He slept until 7:30 am, and even then he had a hard time waking up. All of this combined with his new habit of closing one eye to do his reading and writing made me worried enough to call Suzanne early this morning. I'd already talked to her a day or so ago about his eyes, but I wanted to make sure that she and his doctor were aware of these other things going on. They talked about it and felt that we can still wait for his MRI in a couple of weeks as long as nothing really drastic is going on. They also said that some of these symptoms could be occuring if he needs glasses (like the reading problem) and because of his being so tired. His exhaustion is probably due to the chemo he just had and its cumulative effect. All along he has been more tired after chemo, but not to this extent - that's what worried me. Because of it being cumulative, though, it may be just really hitting him now. I pray that this is all it is. I'm hoping that I'm just being paranoid and a little too sensitive especially because of the fact that we are quickly approaching the one year mark of when he was diagnosed - May 15, 2002. This date is tougher than I thought it would be. I think back to last year at this time when Brian and I were becoming more and more worried because these mysterious symptoms our child was having were getting more and more frequent. I remember at the time being terrified that he might have some kind of cancer, but even having that thought in the back of my mind I didn't really think it could happen. He was throwing up on Mother's Day last year and having the headaches, and when he felt better we posed for a Mother's Day picture - Benjamin, Zachary and me - and I can still clearly recall having the awful feeling that things were about to radically change and that things would never be the same after that Mother's Day. Just a few days later the worst happened. This year as Mother's Day comes around again I am so grateful to still have my Benjamin, and I'm trying not to let my paranoia get the best of me.

Today Benjamin had his follow up appt. at OSU from his radiation treatment. We were so excited to get back and see everyone there - they are so great!! Benjamin started asking as soon as he got up this morning when we were going to see Charlotte - his nurse from radiation. Everyone was so happy to see him and see how good he looks. He ran right in and made himself right at home. He was so happy to see Charlotte, and I felt bad that he was so tired because he was a little quieter than usual. They had a great visit, though, and we'll be seeing them again at Benjamin's next appt. in six months.

Tomorrow its back to Children's for clinic day, and I'm glad that he will be having a check-up before the weekend. I just have to keep reminding myself that this child has been through so much and I can't expect him to bounce right back to his usual bubbly little self just because he's at the end of his protocol. His body has had so much chemo poured into him over this past year and you can't just get over that in a week. Throughtout all of this I've kept my faith and relied on it through some of the worst times ever, but I still feel guilty at how easily I'm shaken sometimes. If things don't seem to be going along just right I panic, and I just have to get past this. We are so lucky to have Benjamin with us and that he was able to get through everything he did this past year. He had an enormous mountain to climb, and he did it without a question of "why me?" I am really inspired by him because I can't honestly say that I've been that strong in my faith at times. I know that I've often asked "why is this happening to my baby?" I absolutely don't wish this type of thing on anyone else's baby - I guess the better question is "why does anyone's baby have to go through this?" I just have to stay strong for him and have some patience to realize that just because the protocol is done it will take time for Benjamin to have his full strength and stamina back. He really is an amazing little boy - as are the rest of the children we've met who are dealing with this same awful illness.

Well, I've rambled for long enough I guess. If anything changes and they decide to run his MRI earlier than planned I will update right away. Please pray for Benjamin that these things he's experiencing right now are just symptoms of his body being tired - and nothing more than that. Thank you for remembering him in your prayers!

Love, Anne

Tuesday, May 6, 2003 9:35 AM CDT

Hi everyone!

There is not too much new to report since the last time. We are getting ready to start our next round of appts. for this week. Benjamin has the last part of his neuro/psych test tomorrow morning, and that will probably be about 3 hours long again. I'm glad that this time he will be going in the morning because that is when he seems to work the best - he's at his freshest. On Thurs. we have his next follow-up appt. at The James Cancer Hospital at the OSU Medical Center where he had his radiation. This is just an appt. to follow him for long term side effects. Some of the long term effects could be to his eyesight (cateracts), his hearing, his learning and memory, his growth (if his pituitary gland was hit during radiation he could experience growth problems - fortunately if this happened he could take growth hormones to counteract it), etc...most of the other side effects are not as serious, if they even occur. We are all excited to go back for this exam because we can't wait to see all of the wonderful people who took such great care of Benjamin. Then on Fri. we are back at Children's for his next clinic appt. and I've called Suzanne, his nurse practitioner, to find out about scheduling an eye exam for him. While he was doing some school work this morning I noticed that he closes one eye while he's reading and writing. He says it helps him to see better. I'm not sure what that's all about, and its the first time I've noticed him doing that. Hopefully we can get in and get that checked. We know already that he will be seen by the eye doctors probably six to twelve months after he's past treatment because one of his eyes doesn't track as well as the other. When they ask him to follow their fingers with his eyes one eye follows more slowly than the other. We were told that this is pretty common and they usually give the kids some time after treatment before "tightening" the muscles back up. I'm not sure what that involves, but they didn't make it sound like a big deal. He does have a bit of double vision peripherally, but they said as long as this isn't happening when he looks at objects straight on then they will give him the 6 - 12 months rest. On Fri. he will take the last of his chemo! He finished the admissions for chemo, but while he's in for that he takes 3 different types of chemo - one is oral, one is in an IV, and the other is just a quick push through his tubies. This last one he receives in three doses - once during his admission, and one each Fri. for the next two Fridays. This is the third dose! It only takes about a minute for it to go through, and it doesn't give him any side effects likes feeling sick. This is the one that causes the bone and joint pains and it can cause his legs to stiffen up. Thankfully the weather has been so nice though, so Benjamin has been playing alot outside so we're not noticing too much stiffness in his legs yet. This can occur over the next few weeks, though, so he's not out of the woods yet. Its happened many times before and we know he can work through it again so we don't really worry too much about it anymore.

Benjamin has been spending alot of time on his bike and his scooter, and Brian and I were just commenting last night about how well he's balancing on that scooter. We're having a tough time convincing him not to do stunts and tricks on it, though - haha! That kid just loves to do things that are a little bit daring to see if he can give his Mom a scare! He's also been having a great time planting flowers with us and this year he even has his own little box going with vegetables that he planted himself. He calls himself "Farmer Ben" and he checks the progress every day. We have to laugh because sometimes he goes out on the deck where his planting box is and pulls a little lawn chair up next to it and just watches the plants. One of his kindergarten class projects was to plant a sunflower seed and watch and write about its progress in a journal, so this was right up "Farmer Ben's" alley!

We found out from his tutor, Mrs. Brinda, that his school might be having a little group of kindergartners meeting this summer to go over concepts some more before starting first grade, and she said that we might like that for Benjamin. She said that she could meet with him, or he could go over for that because it might be really good for him socially. This would give him the opportunity to be in the buiding and get to know his way around and also to mix with the kids - something I know he has really missed. It's not a definite thing yet, so we'll wait and see. Either way I'll be happy because this would be something that would be really good for him, and on the other hand I'd be very happy to have him continue working with Mrs. Brinda this summer. He likes both ideas as well.

Well, that's about all the news here. Things are going along so far so good, and that's all that we can ask for! Its kind of nice to not have alot of news to report because I guess that means that things are almost getting boring around here - which makes me very happy! Thank you for remembering Benjamin in your prayers!

Love, Anne

Friday, May 2, 2003 5:00 PM CDT

Hi everyone!

It has been an awfully busy week, but finally it's Friday! The night before last Zachary took a tumble while practicing his walking and bumped his head on one of the very few spots in our living room that could hurt him - the tiny wooden legs on one of our stuffed chairs. He hit his face, right on the spot where there is bone under the eyebrow, and boy did he scream! I was amazed that it didn't pour out blood since that is a spot that would usually do that. We put ice on it and kept pressure on it while we waited to hear back from the doctor on whether he should have stitches (he opened up quite a little gash). They called back and said that as long as the bleeding had stopped and he didn't open it back up they wouldn't need to have him come in. We were told to wake him every 3-4 hours, though, just to be on the safe side. We're also supposed to keep a band-aid with Neosporin on it for a bit to help it heal with less scarring. He's doing pretty well with the band-aids, but keeping one of those on a one-year-old is not an easy task. Every time he reaches up for it I say "Zachary no, uh, uh, uh!" and he immediately drops his hand and bursts into tears. Hearing the word "no" certainly is devastating to one-year-olds! Benjamin was already in bed when it happened so the next morning he was very concerned about his brother. He kept saying "Mommy, I'm really worried about him!" He finally told me that he was worried Zachary would have a scar. I told him that girls would love that because they love scars on a guy. He looked at me very strangely and asked why that was. I told him that girls would think he was a tough guy and they'd think it was cute. He got a horrified look on his face and said (as seriously as could be) "thank God my hair is coming back because I don't want to deal with that!" I asked him if he thought the girls would like his scar on the back of his head, though, and he said "Well, I would hope not!!!" I told him that some day he would be interested in that sort of thing - haha!

On Wed. we spent several hours up at Children's in the Psychology building for Benjamin's neuro/psych exam. The people who worked with him were extremely kind and gentle and he immediately felt at ease. It was a very long test - 3 hours long - and that was only part one. We go back for part two next week. In about a month we will go back to hear the report and the results of his testing. Even after all the doctors meetings we've sat through this past year where we've had to hear about all of the unpleasant side effects that we will be watching for over the years, the meetings still don't seem to get easier. We just keep reminding ourselves that these side effects are "possibilities" not "for certain." Because of the cranial radiation that Benjamin had as a part of his treatment its possible that he will face learning disabilities in the future such as problems with concentration, problem solving, and short term memory. Its like a slap in the face to sit there and hear it all again. They were very gentle in the way they discussed it with us, though, and we do just have to face it that these things may happen even though he's doing very well in school right now. He did tell us that Benjamin is in a very good position because up until all of this his development and learning had been right on target and normal in every way and because he's had a very stable life with an intact family. We hope these things all weigh greatly in his favor. He also told us that because no one on either side of our families had learning disabilities that it would also lean in his favor. Benjamin's Radiation Oncologist was was wonderful when she met with us prior to treatment last summer. She told us not to let all of this talk scare us about what the long term side effects "might" be. She said that we shouldn't have this picture in our minds of Benjamin not being able to be independent and self-sufficient or unable to learn. She said they follow kids who are years down the road from this type of treatment who are flourishing in college and living perfectly normal lives. She said that he certainly may have some learning difficulties, but they are nothing that he can't overcome with extra work and tutoring if necessary. She said to remember that he will learn and do well, he just may work a little harder than others. This is what I'm trying to focus on. I can't stand the thought of him not being able to meet whatever might have been his full potential, so everything the doctor told us back then gave us so much hope and reassurance! First and foremost, what's most important to us is that we just have our little guy! We will deal with the rest as it comes.

Today was Benjamin's clinic day, and while it was a long day, it was ultimately a very good day for him and his counts. The clinic was really busy today, and that's pretty understandable going into the weekend, but the people up there are so wonderful to Benjamin (and all of us!) Benjamin has been off the Megace for about a week now, and he managed to gain weight this week - all on his own! Everybody thought that was great news for him. He now weighs 49 lbs. Everything went well with his physical - things all look good, and he had a good visit with Suzanne (his nurse practitioner). He was very tired, though, so she found a spot for him in the back in a comfy chair so he could rest for a while. When his counts came back in they were all really good. Now in the next few weeks they will drop since he's coming off chemo, but at least they will be dropping from a high place! Many of his counts were getting close to the low end of the normal range! What a surprise that was! Sometimes when his counts stay so high right after chemo I start to worry that why aren't they dropping more? Not that I want them to, but I get scared that what if the chemo isn't strong enough. Oh well, all the "what ifs" could drive a person crazy, I guess, if I really dwell on it too much. I have to learn to focus on what "is," not whatever I can dream up in my crazy imagination - haha! But anyway, his counts were good news this week, and probably next week (and also over the next few weeks) they will drop before they rebound.

The highlight of the day for Zachary was the visit to the floor from Winnie-the-Pooh. Pooh Bear and Elmo are Zachary's favorite characters at this point, and this was like a dream come true for him, I think. I thought he might be afraid of the giant character, but he reached his little arms right out and wanted to hold hands with Pooh Bear. Then when Pooh left our side of the unit we had to follow Pooh Bear to the other side so Zachary could look at him. His eyes lit up, his mouth dropped open (and stayed that way), and he just looked like the most magical thing had happened. Little kids are so amazing to watch, that's for sure! Benjamin was really tired, and not too interested in Pooh Bear. I guess he's a little beyond that age now. He was funny, though, he said quietly just to me "its probably just some guy in a costume, Mommy." When I told this story to my Mom over the phone Benjamin immediately said "Mommy, you're not supposed to say that because Zachary might hear you." He just cracks me up!

Well, anyway that's all of the latest from the Jones family. Its been such a busy week, and next week will be just as busy with appointments, but its so nice to have good news to share! Thank you for following Benjamin's story and for supporting him and our family!

Love, Anne

Wednesday, April 30, 2003 10:10 AM CDT

Hi everyone!

Just a quick update to let you know that Benjamin is now off his scheduled doses of anti-nausea medication that is started right after chemo, and so far so good. He hasn't been sick at all on this round either. He gets pretty tired every afternoon by around 3:30pm, and he's been taking naps this week which he never does. He wakes up recharged and ready to play for a few more hours and then heads up to bed at around 8:00-8:30pm. We know he's tired because he tells us that its time for him to go to bed! He's also been eating very well this week- which has been a little bit of a surprise to us. We had started him back on the Megace (the medicine that makes him hungry) week before last because he wasn't eating well, but maybe that week was just a fluke, I don't know. I'd been giving him the absolutely smallest dose possible, and he started eating like crazy again. For the past three days I havn't given him the medicine and he's been doing great again. When he's on the medicine he gets 2 and a half mls. once a day, and it seems like he's somewhere between 2 and a half mls. and nothing. He's been eating full meals three times a day and having snacks in between again. We'll just keep watching and eventually he will be completely back on track again.

His sore ankle is doing much better! Our weather has been wonderful so being outside and moving around more is helping him work out that strain. He and Zachary really love being on the swings and playing in the sandbox, although Zachary still refuses to let his little feet touch a grain of sand. When I put him in the box he turns him self around so his feet can hang outside of the box - what a silly little guy!

Benjamin was thrilled yesterday since his Daddy came home at half a day to watch him while I took Zachary to the doctor for his one year check-up. Zachary's doctor is so nice, but I hate taking him in there because I'm always afraid that Zachary is going to come back out bringing some kind of "bug" with him to pass along to his big brother. He had a great appt. though. Zachary is walking - trying to run (not with great success yet, though), he says several words now (Mama, Daddy, kit-cat, car, cool, toy, night-night, love-love - he says this at night to Benjamin when they tell each other good-night. Benjamin says "I love you" to Zachary and Zachary says "love-love!"), and he's been sleeping and eating well. He now weighs 20lbs. and 15 oz., and he's 30 and a quarter inches long. His height and weight are about average, and his head is in the 90th percentile. He's got a big head like his big brother, but mercifully his head didn't get big until after his birth. He was quite upset after his appt., though, because he had three shots. Zachary's a wonderfully sweet baby, but when he's mad you know it, and his new thing lately when he's mad is to blow a raspberry at the person or object of his anger. My Dad asked me if Zachary was angry with them for giving him a shot, and I told him yes he was, but he couldn't get his lips together to spit at them because his mouth was wide open screaming. I have no idea where the spitting thing came from, but I will be very glad when he can talk better and use words instead of saliva to let us know he's angry.

Benjamin received his next progress report for school, and he did a wonderful job again. He won't get another report card until the end of the school year, but the progress report was great! We are so proud of him for working so hard. I talked with his tutor, Mrs. Brinda, yesterday about the possibility of his being tutored through the summer as well, and she said that she would love to keep tutoring him. He will be coming into the next school year with the disadvantage of never having been in the classroom (aside from pre-school and pre-K), and first grade will also be a full day of school which will be a huge shock to his system. The summer tutoring will help him stay fresh on everything and hopefully give him some extra confidence as he begins something so new. I asked Benjamin how he felt about this and he was so excited that he will get to see Mrs. Brinda through the summer -we're all happy about this. She is so wonderful and he looks forward to every day that she comes over. He always tells me things that he's going to tell Mrs. Brinda about when she gets here - things he's done over the weekend, something new he learned, something he's looking forward to, etc... Brian and I have been so pleased with how well his tutoring has worked out this past year!

Well, tomorrow is the first half of his neuro/psych test at Children's Hospital. I will update more after he's had this testing done and he's had his weekly clinic appt. He also has PT on Friday with Kathy. I hope everyone has a great week!

Love, Anne

Monday, April 28, 2003 6:01 PM CDT

Hi everyone!

Just wanted to update on Benjamin's progress since coming home from chemo. So far he's been feeling great - he is tired - he's not been sick so far. He has to take anti-nausea medication for the first four days after chemo at two scheduled times a day. He has one day to go so hopefully he can get through this round without too much difficulty. He did have bone pain while still in the hospital, but we've only had to give him morphine once since we've been home. He still has a window of time left, though, for it to develop, and we won't be surprised when it does. We hate it for him, but its pretty typical of what to expect. The only walking trouble he's having at this point is in his ankle from falling down a couple of our stairs a little over a week ago. I can't remember if I wrote about that. A week ago Friday (before we left to go out of town) he slipped down a couple stairs. His foot really didn't bother him too much at the time, and he did alright up at the clinic that day before we left. Of course, after we were 200 miles away his foot/ankle started bothering him. I called his nurse practitioner and she said it sounded like he just strained the tendons in the back of his ankle. When he first gets up and walks he limps quite a bit, but the longer he's walking the better he looks. We asked for it to be x-rayed while he was in for chemo just to be on the safe side (especially after the recent broken arm incident), and I'm happy to say the bone is fine. We're going to do a little extra PT to help him work through that. His legs will probably stiffen up again from the Vincristine (chemo) that he just received, but we know that this has happened before and he can work through it.

He's been having a great time playing with his little brother and enjoying the warm weather the Columbus area has been having. He had planned to go golfing tonight with his Daddy, but by the time my husband got home Benjamin's ankle had stiffened up quite a bit - maybe tomorrow.

This week will be a busy week with lots of appts. Zachary has his one-year-old check-up tomorrow afternoon. We can't wait to see how much he's grown! He's a pretty solid little guy so I'm sure there's been a big weight gain. On Thurs. Benjamin will be back at Children's for the first part of his neuro/psych test. I had no idea that this test lasts for about 3 and a half to four hours each day and its a two part test. I called today to find out the length of the test, and they told me that they do give the kids plenty of breaks for a rest and snacks. He has the second part of the test next week. Then Friday will find us back at Children's again for clinic day - it seems to come around faster and faster every week. After his appt. at the clinic he may have PT that day with Kathy - which he always looks forward to. They have the best time playing! Next week Benjamin has his next follow-up appt. at The James Cancer Hospital at OSU Medical Center. He's so excited for that because he can't wait to see his nurse Charlotte! He's already making plans to bring her a cupcake or a doughnut. Next week he also has the second part of his neuro/psych test and another clinic day. I'll be glad to get through the next two weeks because it will be a lot of running around with the boys. Fortunately at every stop we make we will get to visit with all of the great people who have taken care of Benjamin all along. They have been so wonderful to him - he goes wherever we have to go without any struggles because he knows his caretakers there will be silly with him and make the whole thing easier.

I felt alot of mixed emotions as the time for his last chemo of the protocol came closer - both happiness and fear - but every day feels like its leaning more on the happiness side of things. We have no idea what the future holds, but I feel so grateful that he's made it this far. He's asked me a few times over the past two days if he's ever going to have to do chemo again. That is such a hard question to answer for him because I don't want to give him any worries. I just tell him that everything looks good and that's why we're going to keep up with the scans - so we can keep an eye on things. I told him that he's done with the chemo for this protocol, and now we're just going back for well-visits and follow-ups. That satisfies him for now, and I hope that because of how young he is that it will be a long time before he understands more about it. He's just so happy right now and he will be even happier when those tubies come out and he can swim.

Thanks for still checking in on him and for remembering him in your prayers! Brian and I really appreciate everyone's support.

Love, Anne

Saturday, April 26, 2003 5:43 PM CDT

Hi everyone!

Well, it's hard to believe this day is finally here, but late this afternoon we brought Benjamin home from his last chemo of his protocol!!!!! He is feeling well so far, and he's so happy to be home. He picked out what he wanted to take in for a thank-you party for all of the doctors, nurses, PCA's, therapists, and everyone else who cared for him over this past year. His cake was wonderful - it was decorated in frosting with band-aids, thermometers, stethoscopes, and medicine bottles, and in big letters it read "thank you!" We really can't thank all of them enough for all that they did and for the outstanding care that our son received.

His chemo ran through yesterday and after hydrating for 24 hours Benjamin was allowed to come home at around 5:00pm today. He had asked me to dress Zachary in his new dress-up outfit he received from my Aunt and Uncle for his birthday. They gave Benjamin a matching outfit, as well. He wanted me to pack his outfit so when he left today they could match - they looked so handsome! After thanking everyone he put on his little mask (to protect him from breathing in any germs), and he walked out of the unit. He was a man on a mission, and he got off the elevator and headed for the doors to the outside ahead of me, Zachary, and Aunt Kate (my parents and my sister were down this weekend for his last chemo). As soon as he stepped outside the doors of the hospital he stopped and put both arms high up in the air, and he signaled #1 with both hands. Katie and I saw him at the same time and we both couldn't get over it! I wanted to laugh and cry at the same time! That kid really deserved that moment and he is definitely tougher than anyone I know. He stood in the doorway, in the bright sunshine, and he looked like he was so proud of himself - as well he should be! I hope and pray he never has to go through anything like this ever again.

For the next month he will follow his regular clinic schedule, and he will have his next MRI in four weeks. They were debating about whether to wait a bit longer for the scan since he just recently had one, but since that scan was only of the brain, rather than a scan of the brain and spinal column, they decided to run another one in four weeks. I told them that I was just as happy with that decision - I will definitely feel better knowing how things look in there. As long as that scan looks good they are removing his broviac (or his tubies as he calls them) the following week. He is greatly relieved because he will be completely out for that (he can handle anything as long as they give him his "sleepy medicine"). After that he moves onto the every three months schedule of MRI's.

Thank you so much for praying for Benjamin and for checking in on his web page. We're going to keep his page going for awhile still to keep updating on his progress and to update on his scans. Please continue to keep him in your prayers!!

Love, Anne

Thursday, April 24, 2003 12:16 AM CDT

Hi everyone!

Benjamin wanted to change the design of his web page from the jelly beans to something else since Easter's over now. He decided the bright sunshines and the green printing (for grass) would be very summery.

Well, tomorrow is the day we have waited nearly a year for. Tomorrow morning Benjamin is being admitted for the last chemo of his protocol! This kid has been through a grueling year of surgeries, medicines, chemo, shots, fevers, radiation, weekly doctor visits, weekly dressing changes, etc.... I am so proud of him for the way he has handled all of this and come through it. He is still the same wonderful boy with the terrific sense of humor and sense of fun. I was afraid that this whole experience would really rob him of his innocence, but for the most part it hasn't. He is certainly looking forward to putting this behind him, but he doesn't seem to have any major fears about doctors and hospitals. He always asks if whatever procedure that needs to be done will hurt, and if it won't he's happy, and if it will he just asks that they hurry up and get it over with - he's very brave!!!

We're planning to have a thank you party with all of his doctors, nurses, therapists, and any little buddies who happen to be admitted while he's in tomorrow. Benjamin picked out what kind of cake he wanted, the plates, cups,and napkins, and what kind of pop he wanted. So many people at Children's have been so good to us, there's no way to ever properly thank them enough for what they've done for Benjamin and for our family! I have said all along that while this whole experience is something I wished had never happened, but if it had to happen these are the people to go through it with - they are fantastic! Everyone from the clinic, the Hem/Onc floor, and all of the other professionals who cared for him during his many procedures went above and beyond to take special care of him and make sure that he felt safe and important to them. It will be hard to say good-bye to them when he is completely finished (after the tubes and everything come out in one month as long as his MRI is clear), but it would be wonderful to see them for well-visits only! They have given us the most wonderful gift of all - our Benjamin!!! We will continue to hope and pray that all of these tremendous efforts will have been everything he needed to keep that horrible illness away!

Benjamin still will have weekly clinic visits for the next month or so after chemo, and he will have another MRI in a month. As long as the MRI comes up clear he can have his tubies taken out, and then the first thing he is planning to do is jump in a pool! He can't wait for that, and we can't wait to see him enjoying the water again. I can't wait for him to be able to have a regular shower or tub bath without the fear of getting his tubies wet. Benjamin's doctor can't believe he still has the same broviac and tubes that were implanted last May 29th. These very often become infected and we have been extremely lucky so far. Hopefully the tubies can hold out for one more month! Benjamin is also scheduled to have a neuro-psych test in the next few weeks and from there they will monitor if he is having any side effects on his memory and learning from radiation. So far he has been doing wonderfully! Mrs. Brinda, his tutor, has had to make up days with him for school and on those days they have worked for two hours straight. She always asks him several times if he'd like to take a break and he always tells her that he's fine. She said that she's amazed by his concentration skills, and we're relieved to hear that he is able to do this. Kids who have been through the radiation he's been through can do very well in school, but many have some difficulties with concentration or other learning disabilities. His radiation oncologist told us that this doesn't mean that he won't learn - she said that he will do fine, he just may have to make some adjustments in the classroom. She said they follow the kids and they do well in school, high school, and college - this was everything we were hoping to hear! At times we think we've noticed slight effects to his short term memory - he might ask us something, and then a short time later ask us the exact same question and not remember that he just asked that. This is something that doesn't happen very frequently, though, maybe once every couple of weeks. Sometimes we're not even sure if its a side effect of radiation or just an effect of being a busy little six year old boy. Anyway we will have the testing done so we have something to compare his progress to. After this MRI in one month I believe he will move to an every three month schedule of MRI's, and other than that it should be back to business. We'll, of course, have to watch for any signs of symptoms that he experienced before, and he also has a shunt in his head that drains down into his abdominal cavity to prevent any buildup of fluid in his brain that we will have to watch for any signs of trouble. If we did notice anything we would bring him in and they would simply run a CT scan to take a peek at it. We shouldn't be surprised if at some point it gets clogged or something relatively minor happens - we just need to get him in to Children's quickly. There will probably be surgeries down the road for the shunt as he grows to adjust the length of the tubing that leads down to his belly. The surgeon said that there is good bit of tubing in him now that is coiled up and should allow for his growth, but at some point it may need to be added to. This type of surgery is much easier than the brain surgery he first had, though. He gave all of us - including his doctors - a good scare when it was discovered he needed the shunt. He woke up in the morning with an unbelievable headache - he was just moaning for help constantly. By the time we got him into Children's (which is only 20 minutes from our home) he would only lay down and he couldn't tell us where he was. He kept asking Brian and me to go downstairs and get his video games (he thought he was at home). They admitted him immediately, and by the afternoon he wouldn't open his eyes, speak, and we weren't even sure if he could hear us speaking to him. His face was swollen and kind of an ashen gray color. Brian and I were terrified! His neurosurgeon felt that he needed to be moved to the 3rd floor instead (the neuro floor) because an emergency surgery performed at his bedside might become necessary to drain the fluid that was building up to
dangerous levels in his brain. Thank God she suggested this because minutes after we got him transferred he began having difficulty breathing. We called for help, and time felt like it was standing still while we waited for someone to help him breathe. I asked him to squeeze my hand if he couldn't breathe, and his little hand was practically pumping my hand off. They asked us to leave and decided to perform the surgery right there. The wait was torture, and we completely felt that we were losing him right then and there. A short time later his doctor came out smiling and said that all was well,and that the transformation was almost instantaneous. When we came back in the room he was speaking again, alert, and doing very well. I had been very resistent to the idea of the shunt originally (I was afraid that we would be sending cancer cells to other parts of his body through the shunt), but they told me that while it was theoretically possible for that to happen, we had no other choice but to do the shunt - he would not make it without it. When something is put to you that way, you do what they say. They also said that the chemo he would receive would be going through his entire body anyway, and it could take care of it. Needless to say we will watch very closely for signs of the shunt having problems - I think that day was the most terrified that I've been through out all of this. I saw his neurosurgeon a few months ago, and she was stunned to see Benjamin running up and down the halls on the neuro floor. She said that he really scared her that day, too. We definitely have a lot to be thankful for.

I am so grateful that Benjamin has done as well as he has, and that he has had such wonderful people on his side! I know that he has a long road ahead of watching and waiting, but I refuse to let this be the focus of our lives. I told my Mom that we can't spend the next ten years paralyzed (10 years is the watch and wait period for his type of tumor - some cancers are on a 5 year period, but his is longer, unfortunately)because if I do that and only wake up when that time has passed then I will have missed his entire childhood and I will be getting ready to send him off to college very shortly (in 10 years he will 16 and a half). We have to move on and let him have a great life. For the most part we really don't focus on what's happened anyway - its usually only at MRI time that we tense up again. I think it will be a long time, though, before a headache and a vomiting episode will be just that. Whenever it happens now I do freeze up momentarily and wonder if "its" back. I don't know how long (if ever) it will take for that to go away. I guess time heals all.

Well, I will update again after we're home from Benjamin's admission. Please keep him in your prayers as he heads back in again. Please pray that this will be for the last time.
Thank you all for caring about him!

Love, Anne

Tuesday, April 22, 2003 7:58 AM CDT

Hi everyone!

I hope everyone had a wonderful Easter! As soon as Benjamin was all done at the clinic on Friday we headed for home, packed up the car, and left for Ashtabula to be with our families for Easter and for Zachary's and my Mom's birthdays. Benjamin had a good day at the clinic - his counts were all good! Unfortunately, he did lose about a pound and a half since the Friday before, but we weren't surprised about that. I had started him back on his Megace (the medicine that makes him hungry) at the lowest dose on Thurs. morning because he just wasn't regularly eating well. He continues to eat three meals a day, but the breakfast and supper meals were shrinking quite a bit. We were disappointed to have to start the medicine again, but that's what its there for and maybe his tummy and his brain still just need a little more reminding that its time to eat. We definitely noticed his appetite picking back up again while we were gone so hopefully his weight will be back up this Friday.

It was so great to be back in Ashtabula for a few days and to be with our families. For those of you who don't know, Brian, Benjamin, Zachary and I are the only ones in our family down here - both sides of our families live in Ashtabula. The boys were so excited to see everybody and they loved all the attention! They must be pretty bored this morning (we came home last night) since its just Mommy here with them - haha! My Aunt and Uncle from MA drove all the way out for a visit, and my sister flew in from Chicago so it was wonderful to see them since we don't get to very often. The boys enjoyed every minute with all of their grandmas and grandpas and aunts and uncles and their cousin, Ashley.

We had Zachary's birthday party on Sat., and it was such a great day! Zachary was perfectly content to sit on his pile of presents - he had no idea what was going on. Benjamin and Ashley did the honors of opening his gifts since he really didn't understand the whole thing, and they had a great time helping him. It was so nice to be all gathered together, talking, laughing, watching the kids play and not thinking about anyone being sick! I can honestly say that the thought didn't keep popping into my head, and the focus of the weekend was happiness and fun and nothing about being sick! Life really felt normal, and that is something I never realized I took for granted so easily before. Benjamin played so hard this weekend and had so much fun - no one would have realized everything he's been through if they didn't know better. My Aunt and Uncle hadn't seen him since the three weeks after his surgery when they stayed with us to help us with all of his care, the baby's care and everything else we were overwhelmed with at the time. They were so pleasantly surprised at the transformation in him since then. They couldn't stop smiling and saying that he was just like "the old Benjamin." He was really in rough shape when they had to leave to go back home, and even though we've talked on the phone so many times and updated them often nothing beats being able to lay your eyes on the person to see for yourself how they're really doing.

Benjamin and Zachary had a great time at both their grandparents houses and with all of their family - it was sad to see the weekend end. It is nice to know that hopefully this summer we'll be able to make lots of trips back up there, unlike last summer when the only places we saw were our own house and Children's Hospital.

Now we're back home and trying to get settled back in for the week. This Friday Benjamin will be going in for his last chemo of his protocol - I can't believe this day is almost here. We're having a little "Thank you for taking care of me" party that afternoon, too. We're too superstitious to call it a "last chemo" party, I guess that's bad to be so superstitious considering how much Catholic schooling Brian and I have both had (from 1st grade all the way through college), but there it is. We hope to God that everything he's been through will have been enough. At every decision along the way Brian and I have opted to go with as aggressive a treatment as his little body will allow, and now all we can do is hope and pray that it will have been everything he needed. I can't describe the torture that most of these decisions have been. We knew that he had to be treated aggressively because of the small amount of spread there had been, so most of the decisions weren't really "decisions." Most of them were choosing which of the two horrible sounding options would provide him with the best chance. Every step along the way came with side effects that we knew we would have to accept in going with that direction of treatment, but that was the way we had to go because the other option wouldn't help him as much. Never in my wildest dreams (or nightmares) would I have thought that Brian and I would be making choices about chemo, radiation, etc. for our child, but then again, who does? None of the other parents we've met up there would have dreamed of this either. My feelings about where we are now are hard to put into words. I know we've given him everything medically that he could take, and like all the rest of this, its completely out of our hands what happens now. For him I'm always positive and optimistic, and most days on the inside I feel that way too. We'll just keep watching, scanning, and praying. I love to hear stories (and many people have e-mailed me with these)of people whose children had brain tumors, went through treatment, and here they are years later living happy, typical kid lives. That's what I hang on to.

We may make another visit earlier this week to Children's for Benjamin's ankle. He fell down a couple of stairs Friday morning, but he didn't seem to have a problem until we got out of town - of course. He is favoring that ankle when he first stands up and walks around, but then after a bit he's fine. It doesn't bother him all the time either - he played quite a bit over the weekend, and he had no problem when we went to the mall to visit the Easter Bunny with Ashley on Sat. It seems like when he's sat down for awhile or when he first gets up in the morning he favors it more. He says it just feels stiff, not sore, but we'll see.

I almost forgot, we did have some very encouraging news from Benjamin's audiogram (hearing test) last Friday. At his last test he had experienced a significant loss in his high pitch frequency hearing, and we were told that he wouldn't be able to hear sirens (which he can hear and that confused us in the time since that test), and he wouldn't be able to hear certain letter sounds and he would lose the ability to pronounce those sounds if he lost a little bit more hearing. We were told if he lost a little bit more we may be getting close to dealing with hearing aids next. Needless to say we were so disappointed to hear these things even though we'd been told to count on that happening because of one of the chemos he's on. That type of chemo is known for destroying hearing, but we've known that was a chance we'd have to take because he needed that chemo. At his audiogram on Friday he only lost a tiny bit more high pitch frequency hearing (this in not conversational hearing, thank God), and the person who did his test (not the same person as at his last test) had good news for us. She said that with the amount that he's lost so far, and figuring the amount he's likely to lose from this next round of chemo, he should have no problem hearing sirens, letter sounds, and pronouncing those same sounds, and that he's nowhere near needing hearing aids!!! She said that he won't be able to hear a dog whistle, but who does? We laughed at that. She also said that the only sounds he is going to have a tough time saying are his S's and that's because he's lost his two front teeth - nothing related to hearing. Again, we laughed, but it took a few seconds for us to realize she was joking with us, and that we were really hearing that, for now, his hearing is fine. She said that in school he will flunk every hearing test they give him because of the high pitch loss, but that as far as what he hears in conversations and how he hears himself speak he is fine. What a huge relief that was. Brian and I have to keep in mind, though, that while he seems to be getting through the chemo without a lot of damage to his hearing, he will have to be watched over the next 10 years for future hearing loss as a late side effect from radiation. The woman told us that some kids come in year to year and have absolutely no change in their audiograms (which is what we're hoping for), and others come in up to ten years later and need to have hearing aids. We've already talked about all of that with him though, and he said he doesn't mind as long as he can have the hearing aids that tuck right into the ear and are invisible to other people. Even if that happens I told Brian I was just so happy to hear about all of the other brain tumor patients who were coming in 10 years later and living normal lives - that's what's most important for us. Hearing aids are minor in the grand scheme of things for him. I just want him to be one of those kids coming in 10 years from now when he's 16 and a half, and if he's lost more hearing then it will still be OK.

Well, I guess I've rattled on long enough - haha! Thank you for checking in on Benjamin and for praying for him! We appreciate all of the prayers!

Love, Anne

Thursday, April 17, 2003 8:02 AM CDT

Hi to everyone!

The weather has been beautiful here all week, and Benjamin has made the most of it playing outside and going for walks. He and Zachary especially enjoy swinging together on the swingset (Zachary loves his baby seat) and playing in the sandbox. Zachary is so funny, though, because he doesn't like the sand on his toes and feet so he sits in the sand and holds his legs up off the sand. His abs are going to be amazing if he keeps that up- haha!! Benjamin wants to bury his feet in the sand, of course, so Zachary spends alot of time digging himself back out.

Our baby Zachary turned one year old yesterday! I can't believe it! We're having a party with our families this weekend in our hometown, but we had to at least have a little celebration last night. We had cupcakes, and Zachary's had a little candle in it. His eyes just lit up when I brought it over to the table where he was sitting, and we all sang "Happy Birthday." Benjamin and I have been trying to teach him how to blow out candles and how to hold one finger out to show he's one. We're not having much luck on the holding out his finger, but he is learning to blow. We are definitely making sure he has his own tiny cake on Sat. for his party because no one wants to eat from where Zachary has blown/spit out his candle. He either spits out the flame or he makes this little sound like "tah - tah" which produces very little air, but also no drool. He stuck his little fingers right in the frosting of his cupcake after I removed the candle, but he didn't know what to do with his fingers after that. I held the cupcake up to his mouth so he could taste the frosting, boy, did he love that!! That was his first taste of anything so sweet. After that when I held the cupcake out to him he divebombed into it and got almost all of the frosting off the top of it. It was adorable!! Benjamin made a little wood Tonka truck for Zachary from a kit, and it came out terrific! The kit didn't come with paint, but Benjamin thought it definitely needed a coat of paint, so we found some and he gave it a good paint job. What a sweet big brother! This weekend we're all looking forward to going to see our family in Ashtabula and celebrating Zachary's and my Mom's birthdays - Zachary was born on my Mom's birthday. I asked Benjamin what kind of party we should have for Zachary - Elmo (or Momo to Zachary) or Pooh Bear since they are his favorites. Benjamin said that since its his birthday we should ask Zachary. He asked his brother which he would like, and for some reason (there's no way Zachary could have understood what Benjamin was saying, but it was cute nevertheless) Zachary picked up his Pooh Bear and shook it at Benjamin. Benjamin said "I think he's picking Pooh Bear!" So Pooh Bear it is, and we're looking forward to seeing everyone and having great Easter and birthdays celebrations.

Tomorrow is another clinic day - they just seem to be coming around faster and faster. I can't believe we're one week out from the last chemo of the protocol! Benjamin is planning a little Thank You party for everyone who took care of him while we're in next week. I'm going to try to get a cake that is decorated with little frosting medical supplies -like stethoscopes, band-aids, thermometers, etc. and a great big Thank You on top!!!

I'll update more after our clinic appt. and I hope that everyone has a wonderful Easter weekend!

Love, Anne

Tuesday, April 15, 2003 4:08 PM CDT

Hi everyone!

I hope everyone had a nice weekend. We had a really relaxing one, and the weather was beautiful! We bought a new sandbox for Zachary's birthday (a big one with room for the two of them), and they are both enjoying getting out in it. Benjamin is especially enjoying being able to head out the back door in the morning and play. Last summer he was out just a few times, and he really couldn't do very much. How fun it is to see him going from one thing to another out there - he plays in his clubhouse, the sandbox, the swings, the slide, t-ball, everything!!!!!

Today was Benjamin's first PT and OT in a month (he's on a monthly schedule now), and he had been looking forward to it for some time. He was a busy boy, too. He and Kathy did his stretches, played ball - practicing kicking and catching, ran races and practiced walking on the lines (like a balance beam) all on the outdoor playground on the third floor roof at the hospital. Then when they came in they played hockey. After he finished his work for OT he asked if he could play baseball with them, so they took him in the hall and did that for about 10 - 15 minutes. He told me he wasn't tired a bit, but he did sleep the last 5 minutes of the ride home. I was so pleased to find out that his range of motion in his legs is holding steady after this last round of chemo (and the doses of his chemos were increased, too), and Kathy even thought he might have shown a little improvement. His legs definitely did tighten up due to the Vincristine, but he's been such a good boy about wearing his leg braces and doing his stretches with us. He's worked so hard and was able to work out that stiffness before starting this next round. This is what we were hoping for because we don't want any of his chemo to be cut for this last scheduled round.

As we were walking out Benjamin told me that he has really missed Kathy and Karen since it was a whole month since last time. He said he can't wait to see them next time, and I didn't have the heart to tell him that it will probably be his last PT/OT. When he went back for OT Kathy told me that his improvement has been so great that after his May 13th appt. he will probably be done - that is depending of course on how he does after the next chemo. If he's very stiff then he would need more therapy. This is a wonderful step for him and his progress, but now we're coming to the part of saying good-bye to the fabulous people that have been such a huge part of his life (and ours) for the last year. All of the people at Children's have been his only contact pretty much because we've had to keep him isolated, and they've all been so good to him. He's become very attached to so many people. They've become his friends. I will have to tell him that PT/OT will be finishing up soon, but I'll tell him that we can always go back and visit. When he finished radiation we weren't allowed to say that it was his last visit because he got too upset. He was very attached to his nurse, Charlotte, and he cried when he found out he wouldn't see her every day. We had to say it was the last "treatment", but not the last visit. I had to bring him back two weeks later because he missed Charlotte so much.

Benjamin had me laughing so hard as we walked back to the car after therapy. I told him about how last year after his surgery we had wanted to take him out on that rooftop playground, but that he wasn't really up to it. I told him about how far he's come since then. When they used to come to his room for him to take him to therapy he cried when he saw them, and he cried with every step he took down the hall to the therapy gym. The walk just took him forever too. He was very unsteady - someone had to walk on either side of him, holding him up and supporting him. His neck was so stiff after surgery that he couldn't turn his head in any direction, and he screamed when we tried to get him to move it. Back then seems almost like forever ago. At that time I didn't see how he could possible ever be at the place he is now(that part I didn't tell him, of course), but here we are almost exactly one year later. I asked him if he could remember any of the trips to therapy back then because he was on some pretty strong pain killers - I thought it might be lost in his memories. He said that he could "but back then I felt just like crud so I didn't want to do anything." I'd never heard him say anything like that, and the tone he used was just so funny. Then he said that the way he actually felt was really a bad word (crap) so he would have to say "crud." Throughout all of this horrible experience Benjamin has never lost his sense of humor, and that has just amazed us! I think his young age has certainly protected him from alot of this. I hope in time that all of the bad from this past year fades from his memory, and that he can only remember the unbelievably fantastic people who helped him and took such wonderful care of him (and of his parents!!!!).

I hope that all is well with everyone, and I will update more after his next clinic appt. on Friday. Thank you for continuing to remember Benjamin in your prayers and for checking in on his page!

Love, Anne

Saturday, April 12, 2003 10:02 AM CDT

Hi everyone!

I've been trying to get Benjamin's page updated for the last two days, but I've been having a lot of problems getting online. Oh well, now that I'm on I can tell you that Benjamin had a very good trip to Children's yesterday. We had been hoping that his counts were at their lowest point last week and would be on their way back up this week, and it looks like that's the case. His ANC was back up to 3402! A normal count is between 5000 - 15000, so we were really pleased to see that. I know that 3402 is still below normal, but it will be awhile after chemo is finished before the counts will get back up there. After he spent time with his counts at zero while on his last protocol (which was so scary) we're dancing for joy to see his counts where they are now. All the rest of his counts had come up as well, so hopefully they will continue in that way so he doesn't get delayed for this last chemo of the protocol.

We also made it into the hospital with no problems with his giant jug-o-pee. We were disappointed though because Benjamin drank very little the past few days (much less than he usually does -he usually does pretty well), so there was not much output. I hope it was enough to do the testing that needs to be done- Benjamin will be crushed if he has to do the renal scan. I'm hoping that if need be we could repeat it since they usually run that test the week before chemo and we're still two weeks out from it. That gives us this week to play with. This coming Fri. is also the day he has his next audiogram to test for further hearing loss. We can't understand how its possible that he could have lost a significant portion of his high pitch frequency hearing. They told us he wouldn't be able to hear sirens and things like that, and everytime we hear one he hears it and at the exact same time we hear it. This is while its still quite far off. I keep hoping that maybe the test was a mistake, but I shouldn't be that naive. We wouldn't have known there was any loss if we hadn't been told. Sometimes he doesn't seem to hear us right away when we talk to him, but I can't tell if that's just normal six-year-old selective hearing behavior. Besides they had told us his conversational hearing was still fine. We'll just have to wait and see what they say on Fri.

We're just so happy its another weekend! The weather is beautiful so we will try to have him playing outside in the yard as much as possible. With his counts being so good we would love to take him somewhere fun, but now that SARS has hit central OH we've been scared to death for him. Outdoor places like the zoo would probably be OK, and we don't want to keep him in a bubble, but its so scary. Its hard to imagine that these children on chemo can get through all the horrible side effects from the medicine, get through all of the fevers, etc..., and then some virus can come along and take over when they're vulnerable and too weak to fight it because of low counts from chemo. We know more than one family that this has happened to. He really misses his friends, and Brian and I feel so bad for him that he's missing out on so much. Its just for a little while longer though, and then he can get right back in there. That's what we keep telling him - in just a few weeks he can play with everybody.

Thank you so much for checking in on him and also to everyone who leaves messages for him. He loves that, and we try to get back to everyone who leaves an e-mail address. Sometimes it takes us a few days, especially since the computer is acting up, but we try to.

Love, Anne

Thursday, April 10, 2003 12:35 AM CDT

Hi everyone!

I can't believe we're coming around to the end of another week and time for another trip into Children's for Benjamin's clinic appt. We're trying something different this week so he can avoid the needle stick he has to get for his renal scans. We were told that we can instead do a 24 urine collection(starting this morning), and bring that in for testing instead of his doing the renal scan. We just have to make sure that we get every single drop of it from this morning to tomorrow morning. It should be OK and Benjamin will do most anything to avoid a needle stick. The interesting parts are that the giant container of urine must be kept chilled (thank God we have a small fridge in the basement - not exactly what we want sitting on the shelf next to the milk!), and tomorrow morning we have to get the three of us, a baby stroller, and a giant jug of urine into the hospital. I joked with my Mom last night that everybody better give us plenty of clearance room tomorrow as we enter so we don't have any spills. I really hope this works - its the overnight collections that I'm a little worried about tonight - because I know how much he fears the scans and the start of the IV. If this does work though, he won't have any tests that scare him now.

We're debating whether or not to start Benjamin back on the Megace (the medicine that makes him feel hungry). He's been off it for 2 weeks now, and while he had been doing pretty well for a bit we're starting to see his appetite drop off more than it did initially after stopping the Megace. He had been eating a pretty good breakfast and lunch, but then at dinner he wasn't eating much at all. Between the two good meals and some snacks during the day we didn't worry much about that. However, over the last couple of days he hasn't been wanting any snacks, and he's not wanting much for breakfast now (as well as dinner). He had been coming downstairs first thing in the morning and wanting to eat immediately, but now its nearly 10:00am before he wants anything. He's only eating small bowls of cereal and leaving his drink behind. We were told to start him back on the medicine at our discretion if we noticed significant drops in appetite. I was going to give him a small dose of Megace this morning, but then he had half a pop-tart, a bowl of cereal, and a glass of milk. Maybe we're worrying too soon, I don't know. I guess we can give it a few more days depending on what his weight shows tomorrow at his appt. He's also having quite a bit more bone pain this time around after chemo, and its taking more morphine to keep it at bay. I do have to bear in mind, though, that his chemo doses were increased this last time. Its just frustrating sometimes to feel like he takes two steps forward and then one step back. Its horrible to see him in pain (from the Vincristine), but I just hope that means that the chemo is getting in there and doing its job. I don't want to complain because I really do feel so grateful for how well he's done the last couple of months compared to how he was up until Christmas. The diffence really is like night and day. I also feel blessed that he's in the position he's in now compared to where he was a year ago. I guess the closer he gets to completing this protocol and the closer he gets to his old self the more frustrating it is when he backslides. I do find myself feeling like my stomach is tied up in knots more and more as he gets closer to this last scheduled round of chemo. We have looked forward to this time for a year, and I could kick myself for feeling like this, but I really do feel scared for when we're not "fighting" back with any medicine. I keep these feelings away from Benjamin, of course, because I would never want him to feel worry as well. I am so happy for how he's doing and I'm so grateful just to have him, but I never expected to have this other feeling lurking underneath. I guess I just don't want the rug pulled out from under us ever again, but in life there are never any guarantees for any of us. I'm trying to just focus on feeling hope and gratitude for what we have.

Benjamin is done with school for Easter break now, and he had a great week. He seems to have a special love for money and is quite motivated to learn all about it - haha! He is doing so well with his reading, and its amazing to sit together and take turns reading books to each other! They've also been working on ideas for what he wants to be when he grows up. He says he wants to be a chef only now. For the longest time his plan was chef/astronaut. Now its a chef, and I get to be his taste-tester! Mrs. Brinda (his tutor) suggested he might also want to think about a career in banking based on how well he's doing with his studies in math and money. Gramma Beebe should get a kick out of that (my Mom's a math teacher). He had one lesson that involved counting by fives to 100, and Benjamin went up to 400 before time constraints forced the end of that lesson. He's been able to count to 1000 since he was in pre-school - you don't know how many car rides were spent practicing for that - haha!

Zachary will be one year old in less than a week now! He is walking all over the place, and sometimes he thinks he can move faster than his little legs are really able. He tries to run, but the legs get tangled up. He says "Ben" now and "Benny" which is so cute! He still is happiest when he's got his big brother around entertaining him.

Well, that's all the news here, and I will update more tomorrow after his clinic appt. His counts had dropped quite a bit last week so hopefully they've hit their lowest point and will be on their way back up. Please keep him in your prayers for tomorrow. Thank you all!!

Love, Anne

Monday, April 7, 2003 11:12 AM CDT

Hi everyone!

I hope everybody had a nice weekend! We had a great time this weekend visiting with Benjamin's Uncle Chris and Aunt Adria. We havn't seen them since Christmas so it was so nice to see them. We'll be seeing them and the rest of our family in just a few weeks, and we're all getting excited to get out of town and visit. We didn't get out too much this weekend as Benjamin's counts did drop, and we don't like to take too many chances this close to the last scheduled chemo. His counts are still decent, but there are still alot of "bugs" going around down here. He's really enjoyed being able to go outside while we had our nice weather, but the temperatures have taken quite a dip so its back inside. Last summer was incredibly hot so he didn't get out much at all, and even on the days that were bearable Benjamin still really couldn't tolerate the heat. We're hoping this summer he's able to handle the heat better. On the 75 degree days last week he ran around and played with no problems so that was a good sign. Last year he would just walk outside, play a little bit, and then insist that he had to go in because he was going to be sick. This was even on days that weren't too bad like the days in the 90's. He really wants to be on the t-ball team this year so he's got to be able to stand some heat. His trip to Disney will be in June as well so we really hope he can do alright. We thought that we could go to all of the rides and things early in the day and then head back to our room at noon-time to swim and do indoor things until evening when things cool off a bit. I don't know if I wrote about Benjamin's trip before, but for those of you who don't know he wished for a trip to Disney. His wish was granted by Make-a-Wish and everything has been arranged for us. When we were first approached about Make-a-Wish I think all of the blood drained out of my body until it was explained that this organization is for children with life-threatening illnesses as well. When Benjamin was admitted for his very first chemo back on May 31, 2002 we had no idea what was in store for us or even what the routine was on the 5th floor (Hem/Onc) at Children's. The walk down the long hallway to the entrance to the unit was the longest and most solemn walk I think we've ever taken. Brian carried Benjamin, we all had long faces, and I don't think anyone said a word. I couldn't believe we taking our child into a cancer unit for treatment!! I don't think I will ever forget that feeing down in the pit of my stomach. We had just settled Benjamin into his bed in the room when someone came in and asked me if I'd registered Benjamin with Make-a-Wish. I immediately thought that we hadn't been given all of the information regarding Benjamin's condition because I had only known of the organization as granting wishes for terminally ill children. (I had forgotten that friends of ours had their child's wish granted when she went through treatment, and she is now doing fine about 7 or 8 years later.) I was terrified I would start crying in front of Benjamin (something Brian and I have never done)and I said "fine, fine" and asked if we could be alone for a bit. Thank goodness this woman explained to me that Make-a-Wish is also for children with life-threatening illnesses. It is really a wonderful organization, and our representatives, Sean and his wife Jodi, are fabulous!! Not only was this unbelievable trip planned for Benjamin, but he's also been invited to the American Idols concert in Columbus (he was admitted at the time, unfortunately, and a Monster Truck Rally. We've been told that if the average family tried to plan and pay for all of the things that are done for the children at Disney it could never be done. This trip has been such an inspiration for Benjamin as well when he's felt absolutely miserable. He's been looking forward to this for so long. Just to see him having fun will be the best part of it all for Brian and me.

Well that's about all that's new here. We just have two appts. this week and tutoring for Benjamin. We're hoping that by Friday his counts will have started back up, but since his chemo dosages were upped this last time it may be too early for that. Benjamin is just happy that he doesn't have to have the GCSF shots at home anymore. These are injections to help boost his white blood cells to fight off infection. As if the treatment wasn't hard enough he had to deal with his mother coming at him with needles in his own home. Home is supposed to be the safe place, but these shots do help tremendously. He used to have this done for the two weeks following chemo, but thanks to his new protocol that's over. It was terrifying for him - he would sit on the couch and cry and beg Daddy to help him while I gave him the shot in his leg. When we first started these he really took it personally and would chant "I don't love Mommy!" for about 10 minutes after it was over. I would quickly give him a hug and kiss, tell him I was sorry, and then run outside so I didn't cry in front of him, and then I went for a walk so my head wouldn't explode. After a while he got more used to it, and he didn't get angry with me, but he was still terrified. Every day he knew it was coming and he just begged for us to get it over with. Then he would at least hug me back and say "I know you don't want it to hurt me." I think that was harder than when he would get mad at me and yell at me. He still worries after chemo and asks if we have to do "the shots," so its nice to be able to tell him "no way!" He's really come a tremendously long way in a year!! I can't believe we are almost up to the one year "anniversary?!" of when he was diagnosed. I'm so glad he's where he is today as opposed to where he was last year, but I do feel a knot in my stomach getting tighter as the May 15th date approaches. Even though its been nearly a year of living with this it still sometimes stuns me that this really happened to him. I will see kids who are going through treatment and think "that's so awful for them to go through," and its like I forget that he's been in the same boat. I've been corresponding with a woman whose son had a brain tumor about 14 years ago - he's now in his 20's, graduated from college, and doing so well - and she said that things really do settle down. That's what I'm looking forward to and praying for. Benjamin is hoping for that as well - he says that he wants his old life back, and he says he feels better now that he's almost back to that.

Well, I'll update more this week as he has his appts. Thank you for praying for him!!!

Love, Anne

Friday, April 4, 2003 3:08 PM CST

Hi everybody!

Well, today was another clinic day. Fortunately it was a short one too since Benjamin didn't need a physical today, only height, weight, and vitals and his blood draw. He maintained his weight from last week, and that was a relief because his appetite has dipped a little bit. He's eating three meals a day, but the last meal is small. He's also been having a hard time with one of his medications and he's made himself sick a few times. He was sick right after dinner last night and after breakfast this morning. This medication is Prevacid, and he needs to take it to calm his stomach acids to prevent reflux and that "icky feeling" he gets after eating sometimes if he's not on the medication. It was held up in the mail (another mail-order prescription) and we were told that if he was doing alright without it we didn't need to start it when it finally did come in. For the first couple days he seemed OK without it, but after that we noticed the vomiting after eating started up again. It doesn't happen after every meal, but we'd gone for a few weeks with no problems so this was a little set-back. Then he'd asked for the Prevacid to be in pill form to be crushed up because he said that he couldn't get the liquid down. We finally got the pills and put them in a variety of different things like ice cream, pudding, etc., but he said that he could "feel" them in there and he would run into the bathroom and get sick. We just opened up the capsules and the medicine is smaller than little sprinkles (which we tried to mix it with) on his ice cream. He insisted he could tell which was the sprinkles and which was the medicine, and got sick again. This has been very frustrating because he needs the medicine obviously, and it has no taste at all so we couldn't understand why he was fighting it so much. Today when I fixed his lunch I crushed the medicine up so teeny-tiny and mixed it along with sprinkles in his yogurt, and he had no idea. During lunch he said that tonight he was going to really try hard to take his medicine, but that it was just so hard. Awhile after lunch I told him that "surprise - you don't have to take your medicine tonight because you already took it!" He was a little puzzled at first, but then when I explained he grinned and asked me to give him his medicine like that every time. He doesn't want to know what food its hidden in. Brian and I both knew that this was a problem of mind over matter. I just hope this continues to work because we're worried about him losing weight, or God forbid, needing that tube again. This time he knows how the tube is put in, and I would never be able to get him into Children's to let them do it again.

Benjamin's counts dropped quite a bit from last week to this week, but they're still alright. I'm glad they were pretty high last week because that gave them a higher place to start from as they went down.

We stopped to see our friends from across the street and their baby girl who was born prematurely while we were at the hospital. Benjamin and Zachary waited outside the room with her family while I went in with her Mommy. She is doing wonderfully, and she is just beautiful!! I had seen pictures of her, but this was my first time seeing her in person - what a precious little girl!! Please continue to keep Maggie and her family in your prayers as she continues to do well and make progress every day.

Other than that, not too much is new here with us. Benjamin continues his countdown to being all done and being able to do all of the things he's missed. He had a really nice time yesterday afternoon with his neighbor, and buddy from the hospital, Ben. The two Ben's, and Ben's family, played out back on the swingset. They were out for a walk and saw us playing out back so the kids got to see each other. They had a ball playing together the last time we were in for chemo. What's even nicer is that they will both be finishing up their treatments within a week or two of each other. I know his family is looking forward to it as much as our family is. Then the kids can just enjoy the summer and play together at their homes instead of at the hospital.

Thank you all for checking in on our little guy!

Love, Anne

Thursday, April 3, 2003 10:36 AM CST

Hi everyone!

Benjamin is feeling well and still eating well after almost a week without the Megace. We've noticed that at dinner he doesn't eat very much, but for the other two meals of the day he eats well, and he also has snacks in between both meals. All in all, it probably adds up to enough to make up for not as much food at dinner.

Benjamin had a wonderful time playing yesterday with his friend Rochelle. They have known each other since they were babies, and they've really missed being able to have regular playdates. Benjamin played so hard that he was ready for bed at 7:15pm last night. It was great to see him so happy. We're trying to work something out so they can take swimming lessons together, or at least at the same time, this summer when Benjamin's tubies from his broviac are removed. Benjamin is also planning to play t-ball for the YMCA this summer too. He's so excited since he missed out on this last year. We have plans this afernoon to go outside and practice.

Benjamin's legs are still stiff, but they don't seem as bad as before. He's been so good about wearing his braces and since the weather has been so nice (75 degrees!!!) he's getting lots of good "therapy" right in his own back yard. I'd like to get him out for a bike ride this afternoon (if he's up to it) also because that would be great exercise. I can see his strength and endurance building slowly. He can ride on longer trips now, and boy does he fly along! He pedals so fast that his training wheels have fallen off twice. Maybe its time to take them off for good? He was able to keep going and not fall off so that's a good sign. At the time he had radiation, Dr. Bauer, his radiation oncologist told us that while he may have issues with balance and steadiness more so than other kids might, he will be able to ride a bike like everyone else. She said it might take longer for him to learn and he will have to work harder than the other kids, but he WILL do it. She really made us feel better because although she had to give us a lot of tough news about what his side effects might be, she really was able to deliver it in a positive light as well. She told us that he may have a harder time in school, but he WILL be able to learn and do well. Its the same as with the bike - he just might have to work a little bit harder. Benjamin's tutor, Mrs. Brinda, feels that he will be able handle the transition in school. He's been working with her for two hours a day this week instead of the usual one hour a day. They had some time to make up, and she said that he's adjusted to it beautifully. She said that he's able to focus very well and stay on task. She was really pleased and that made me feel much better, too. Dr. Bauer had said that alot of the kids sometimes have trouble focusing and filtering out distractions. I know that its still very early after radiation for him and we have a long time to come to watch for these side effects, but its just so nice to see that he's off to a good start.

Tomorrow is clinic day again and I will have more to update when we get home. We're praying (as always) for good counts and no transfusions!!! I'm also hoping that his weight is maintaining from week to week. I think it will be OK though.

Benjamin is very excited to see Uncle Chris and Aunt Adria this weekend (we all are!)! We havn't seen them since we were home for Christmas so that will be great! We're also getting ready for another trip hope very soon to celebrate Easter with everyone and to celebrate my Mom's and Zachary's birthdays. They were both born on April 16th. I can't believe my little one is almost a year old! What a year its been! We really believe that the timing of his birth was planned out by God. He really knew that we were going to need this little sweetheart to lift us up during a very difficult year. We received a double blessing in that we couldn't wait for him to get here anyway, and the timing of when he got here brought a lot of comfort to alot of people. He's also been a source of comfort to alot of people up on the 5th floor at Children's. I've had many moms up there ask if they could just hold him for a little while because there is nothing so comforting as holding a sweet, warm little baby when things are spinning out of contol. People have sat and held him and not said a word, they just needed to hold him. I can certainly understand that - that's why the kid hasn't slept in his own crib yet - haha! I told my Mom that it will probably be a fight to get him sleeping in his own room, but I look forward to when that's my biggest problem! By the way, Zachary is walking now! He had taken his first steps a few weeks ago, but now he's able to get himself across a room to whatever he's interested in. Boy are we in for it on our next trip to Children's for chemo - he will be all over the place!! What fun he and Benjamin will have this summer!

Love, Anne

Monday, March 31, 2003 12:51 AM CST

Hi everyone!

Benjamin had a very nice weekend, and he felt great. We have taken him off the Megace (the medicine that makes him feel hungry), and we're just watching and waiting to see if he can stay off it. They told us to expect his appetite to dip for a couple of days, and we've noticed over the weekend that it has. He's still eating three meals a day, but the meal size has shrunk quite a bit. I've been pleased so far today, though, that he's already had breakfast, a snack and three drinks. We've got plenty of the Megace so we can start it up again if need be, but the best thing for him would be if he can stay off it. Its not meant to be a long term solution.

Benjamin's legs have stiffened up noticably, one leg more than the other, so we have him back in leg braces. He's so good about wearing them - he doesn't complain a bit! I know that he can work this stiffness back out again, I just hope he can do it quickly before going into this next round of chemo. For one thing I don't want them to cut his dose of Vincristine, and another reason is that I don't want him to slide even further before he can gain back come of his mobility. Then he would have even more work ahead of him. He would do it, though - his therapist Kathy once told me that he's one of the most motivated children she's worked with.

Benjamin had school today, and he worked extra hard with Mrs. Brinda to make up for some time they've missed working together. She said that he did a great job, and he had several A+ papers to show me afterwards.

I'm so relieved that as I've been writing Benjamin's mail order prescriptions FINALLY arrived. For medications that he's only on short term we can pick up ourselves at Children's pharmacy, but the ones he's on long term we have to order in three month supplies by mail order according to our insurance. I don't mind that because we can get a large supply to last for a while, but its incredibly stressful when it sometimes takes too long to arrive because of hold-ups in the mail system. One of the medicines that we were really getting nervous about is called Reglan (sp?), and it has done such wonders for him in being able to keep food down. They told us that its a medicaion they give babies who have problems with reflux, and it has been the only thing that really works well for him. However, if he misses only one dose he has problems keeping food down. We were down to the last drops of it, so thank God its here. We've had to ask before for new prescriptions to cover just a couple of days until the mail-order medicines arrive, but insurance will not cover that. We'll do whatever is necessary when it comes to his medications, but some of them are extremely expensive!! One of the medications he takes is $220.00 for a tiny bottle so we don't like to see that one run of stock. If its something he needs he will definitely have it - no matter the cost - but insurance is certainly a necessity!

Well, thanks again to all who are checking in on his site and to those who are leaving messages for him. It really lifts his spirits to know that so many people are taking the time look in on him, and I can't tell you what that means to all of us! He is such a tough little boy, and he can really feel the good wishes that everyone is sending his way. I know that it gives Brian and me strength as well!

Love, Anne

Saturday, March 29, 2003 7:11 AM CST

Hi everyone!

I just wanted to update that yesterday was a good day at Children's Hospital. Benjamin's counts were all very good, and he was able to receive his last dose (for this round) of Vincristine. We also were told that he can stop taking the Megace (the medicine that sparks his appetite), and we'll see how he does all on his own. Suzanne told us that if his appetite drops off again for more than a couple days then we can go ahead and start it back up. If we can keep him off of it that would be very good for him. Dr. Olshefski told me that what happened to him (with the not eating for months and months) happens to alot of the kids, but eventually they all start eating again. He said not to worry about it. We can try the Megace for awhile and hope that wakes up his belly and his brain enough to take over on their own. He didn't take any medicine yesterday, and none today, and so far he's eating just fine.

We also had our Friday "date day" at the grill at the hospital food court. He loves that! Zachary had lots of fun too and was clapping his hands. When I joined in with him I was informed by my oldest son that we (Zachary and I) "are so embarassing" and that we "need to stop." I also have to watch how much I hug him in public - haha! He has really become so independent and such a big boy - (maybe too big a boy too soon for Mommy). The people around us got a kick outof Benjamin's embarassment, and I teased him when we got on the elevator and he was clapping his hands that he shouldn't do that because its embarassing. He got my joke immediately and laughed.

He's had a little bit of a tough weekend so far because Daddy went to a baseball game last night and has his Fantasy baseball draft this morning. Benjamin is like Brian's shadow so he wasn't pleased about Brian's plans. This is really the first time Brian has been away this past year, and it really isn't for that long, but to Benjamin it feels like an eternity. He cried himself to sleep Thurs. night and cried all morning yesterday because he knew Brian wouldn't be home until midnight. They have big plans for later this afternoon so he will be a happy boy in a few hours!! He did have a good afternoon yesterday ,though. We got Happy Meals on the way home from the hospital and played outside. It was beautiful here yesterday - 75 degrees! This morning the weather is pretty ugly so I'm glad he was able to get out yesterday. He played baseball in the backyard using his t-ball set, and he was knocking the ball totally out of the yard!

Just to update on our friends' new baby who was born prematurely - I saw pictures of her night before last, and she is beautiful! She is continuing to do well and is making steps forward every day. Please keep her and her family in your prayers as she keeps making progress.

Also please remember the Thomas family in your prayers, as well (her web site is a link on Benjamin's page). She is with her family in NYC, and they had a difficult week of testing and results this past week. They are a wonderful family we met at Children's Hospital. We were all usually in for chemo at the same time and the kids were quite often next door neighbors on the floor. Her family feels the same way we do, that the more people praying for our children the better.

Thank you for all of your prayers and your continued support of our family and of Benjamin!

Love, Anne

Thursday, March 27, 2003 3:59 PM CST

Hi everyone!

There is not much new to report for Benjamin. He has continued to eat VERY well this week at just a very tiny dose of Megace. We're hopeful that this means he might be able to come off the medication after his appt. tomorrow at Children's. He will also receive another dose of the chemo Vincristine. So far he seems to be walking well after receiving the first two of three doses. He has one dose while he's admitted, and he receives doses at his next two clinic appts. He's had bone pain that has lasted a little longer this round, but the Vincristine dosage was also increased for this last round. Thankfully he hasn't been kept up too much at night since the Morphine kicks in pretty quickly. We've definitely had to give him more than usual, though. He seems to still be walking pretty well, but when he's tired he has started dragging one leg again. We may have to have him start wearing his leg braces again for a few weeks just to keep the stiffness to a minimum. His therapist, Kathy, also gave us a list of exercises and stretches to do with him at home since he only has PT and OT once a month now. He has been doing quite well at therapy, but another reason he's switching to once a month is to preserve as many of his PT appts. as possible. Unfortunately that's due to insurance reasons. He's only allowed a set number of visits, and he's getting close to using them up. Thank goodness he doesn't have much longer with the chemo, but we need to save the visits as much as possible because he will get Vincristine tomorrow and he is scheduled to receive three more doses after that (one at his last admittance and two more at the following two clinic appts.). Kathy feels that he should be alright though with the amount of PT appts. he's still allowed. We also know that he can work that stiffness in his legs out because he's done it before. That's another reason I'm so glad the weather has changed for the better - he can get outside and get a lot of therapy just from doing typical "kid activities." I will update more tomorrow after his appt. We're hoping for good counts and no transfusions!

Benjamin got back to his school lessons this week since his tutor, Mrs. Brinda, was feeling better. He really missed her last week, and he asked about her every day. He has become very attached to her, and he really enjoys learning new things from her. He's having lots of fun with the Letter People and learning about time and money. Anyone who knows Benjamin knows that he certainly knows the value of the dollar! His favorite thing to do is take the money he saves up to Target to raid the toy aisle!

I forgot to update about Benjamin's trip to see SpiderMan Live. He loved it! He said the best part was watching SpiderMan swing from the ropes (webs). His earplugs worked well so he was able to comfortably enjoy the show. He did leave a little early though because some people near him were coughing alot, and he said he didn't want to catch something from the "sickos" as he put it. I think he was tired anyway, but I will be so happy when he can mix and mingle with other kids without worrying about catching something. He hates coming through the ER with fevers and he will do just about anything to avoid it.

Thank you for checking in on him, and I will update after his appt. tomorrow.

Love, Anne

Monday, March 24, 2003 6:26 PM CST

Hi everyone!

Benjamin (and all of us) had a great time this weekend with Gramma Jones, Aunt Kim and Uncle Tim who came down for a visit. We missed seeing Papa and Uncle Chris and Aunt Adria, though. We're planning a trip there soon so we're looking forward to seeing everybody then. Benjamin got in lots of wrestling with Uncle Tim (who is a very good sport), and he had lots of fun visiting with everyone.

Today I actually had to call Benjamin's nurse practitioner, Suzanne, with the reverse of our usual problem. I had to find out if we could cut his dose of Megace (the medicine that makes him hungry) again because he was eating so much he made himself sick. We were told to go ahead and cut his dose in half last Fri., and Dr. Olshefski said not to think its not working if his appetite dips for a few days. We've had the opposite happen. He CAN'T stop eating. This morning he'd had three breakfasts before noon and he was asking for more food! I was just afraid that if he got sick again he might decide not to eat because he was afraid of getting sick. He did that once before. He told me that sometimes he felt hungry but he wouldn't eat because he hated being sick so much. Suzanne got a kick out of this "problem" because we waited so long ( more than nine months ) for him to eat normally. His dose was cut in half again today and she said that on Fri. when he has his regular appt. they will check his weight and follow up on how his appetite has been for the rest of the week. At his appt. last week Dr. Olshefski said that if he's successful with his dosage being cut we may be able to totally eliminate the Megace altogether. Yeah Benjamin!!!

Thank you for checking in on Benjamin and for continuing to remember him in your prayers. Friends of ours had their baby yesterday afternoon, and she was born prematurely. Her due date was in June, so she's very tiny. She's doing very well, though, and already is showing what a fighter she is. Please remember her and her family in your prayers as well. We know first hand the difference each prayer makes!!

Love, Anne

Friday, March 21, 2003 12:58 AM CST

Benjamin had his weekly cliic appt. today, and everything went just fine. He was extremely nervous and excited this morning to go in because today was the day for his feeding tube to come out. He got up at 5:00am, and asked Brian over and over if it was time to go yet. Brian took just the morning off to come in with us since I wasn't sure how Benjamin was going to handle having the tube out. I was afraid he was going to make himself sick with worry. It was a very simple process, though, and he just sat on Daddy's lap while I rubbed his shoulders and Linda (the nurse) pulled that tube right out in the blink of an eye. He said it didn't hurt at all, it just made his nose feel "tickly and funny." When that was over he was so relieved that he was ready to leave for lunch. We went downstairs to the grill to wait for his counts to come back and had our weekly "date." He always tells me that he's taking me out, but I've got to pay. He gets the biggest kick out of that. We used to just go down for something to drink, but this time he was able to actually have a snack. When we got back upstairs we got the good news that all of his counts are very good. His ANC is 3621, and it only needs to be at 500 to be allowed out and about! He was thrilled because now he can have company this weekend when our family comes to visit, and he can go to SpiderMan Live.

We were also happy to run into some of the friends that we've made over the past 10 months and to hear that everyone is doing well. However,we were very sad to hear that one of the wonderful families we met there and visited with many times lost their baby boy last night. I talked with his mom and grandma just briefly on Tues. when we were there for PT, and he was really struggling. I can't even imagine their heartbreak - please remember them in your prayers.

Benjamin is doing well with taking his medications orally and he's happy to be done with his tube. Dr. Olshefski said that everything looks good, and he said that the ringing in Benjamin's ears could just be a temporary side effect from the chemo he just received. Its possible that more hearing loss is taking place, but we won't know for sure for another 4 weeks when he has his next audiogram. We're keeping good thoughts, though.

Love, Anne

Thursday, March 20, 2003 9:54 AM CST

I know that I just updated Benjamin's page last night, but he had a little bit of news this morning. He started taking his medications orally again, and so far so good. He was very upset this morning because he's so close to having the tube taken out that he's afraid something will happen to stop it. He wanted me to take him in today to have it done!! I told him that by this time tomorrow it will be out and he will be back in business. I tasted his medicine first (because the medicines he's on now were started since the tube was placed so he has no idea what they taste like), and they really aren't bad. Once he saw that I was OK with it (and he knows that I'm about as picky an eater as he is)he said he could do, and he did! He just has one other medicine to try, but that is one he takes before bed. He's feeling confident again and ready to go in there tomorrow to have the tube removed.

He's also very excited for this weekend because he has two special things going on. His Aunt Kim and Uncle Tim are coming down this weekend, and his Gramma and Papa Jones might come with them depending on work schedules. He can't wait to see everybody, and he has a wrestling challenge for Uncle Tim! Benjamin is also going to see SpiderMan Live. He's been looking forward to that for a long time. Brian talked to someone at work who told him that the show is pretty loud, so I hope Benjamin can make it through it. He's very sensitive to sound. He says he still wants to go, and Brian is going to the store tonight to find some special ear plugs that also have little headphones to wear on the outside to help hold the plugs in place and block out a little more sound. I hate for him to miss anything else so hopefully these will work for him.

I will update more after Benjamin's next appt. at Children's tomorrow. We're praying for good counts and good reports all around!

Love, Anne

Wednesday, March 19, 2003 9:09 PM CST

Hi everyone!

Benjamin STILL hasn't been sick since having chemo on Fri., and yesterday was his last day of having scheduled doses of anti-emetics. Now he only has to take those medications if he's nauseated as needed. We believe that maybe the reason is because he went into this round so much stronger since he's eating now. Whatever the reason we're just so pleased that he's feeling OK. He looks a little pale and he's got the dark circles under his eyes that he gets after every round, but other than that things are alright. He was having more bone pain again tonight, and he had quite a bit of pain last night too, but the morphine does its job.

Benjamin had PT and OT yesterday, and his therapists,Kathy and Karen, said that he is doing so well he only has to come once a month now. We started out at twice a week, then once a week, then every other week, and now he's graduated to once a month. This was good news in terms of his progress, but he told me today that he wishes he could still go more often because he enjoys it and he misses his therapists. He's gotten attached to them and he loves going to play! We were given exercises to work on with him at home, and they said that all of the things he likes to do outdoors are great "therapy" for him as well.

I'm anxious for his next appt. at Children's on Fri. because he told me today that when everything is quiet in the house he can hear ringing in his ears. He said that when the TV is going and there are other sounds going on it doesn't bother him, but when its all quiet he hears it. I'm not sure what this means, but I want to have them check it out when we go in. My heart sank when he told me, but I told him that it was OK. We told him that if he loses more of his hearing that hearing aids are a possibility, but we will make sure they are very tiny to tuck in his ears. He asked me when he could be done with them (the hearing aids), and I told him that if he has to have them it will be like when people have to get glasses. Its something he will need to help him hear like people wear glasses to help them see. This is the first time he's mentioned anything about hearing a ringing in his ears. They told us to watch for him to hear a buzzing or a ringing. I'm trying to think positively though. He can still hear the phone ringing before I can, and he always hears Brian's keys when he's coming up the front walk at the end of the day. He says "Daddy's home!", and when I ask him how he knows that he says he can hear him. We'll just keep praying that the hearing loss doesn't go any further!!!!

Before I go I have a little update on Zachary - he took his first steps tonight!! What's amazing is that he's 11 months and 3 days old, and Benjamin took his first steps at 11 months and 2 days old. They are really two peas in a pod!! He also tries to imitate more and more of the sounds he hears from us. When I changed him today and said something about his diaper being dirty, he kept saying "duh-tee, duh-tee" after me. This age is so much fun and so exciting - it seems like there is such an explosion of learning going on!

Thank you to everyone for checking in on Benjamin! It means so much to him, and Brian and I appreciate it so much!

Love, Anne

Monday, March 17, 2003 6:20 PM CST

Just wanted to write to say that Benjamin went for his first bike ride today since being diagnosed. The last time I took him for a ride was just a couple of days before he was diagnosed. He fell off his bike about every 15 feet, and I couldn't understand what was wrong with him that he couldn't stay on the bike. By this time he was getting sick nearly every day, and the headaches were just starting. We'd asked for a CT scan and other tests to be done, but they weren't scheduled for another 4 weeks. I remember coming back in the house after the bike ride and having an awful feeling that something was horribly wrong. We kept hoping that maybe it was just an inner ear problem, but that was not to be. To see him out on his bike today was fantastic, though!! As we walked along with Benjamin pedaling furiously ahead of us I told Brian that it almost feels like the last year never happened - like it was just a terrible nightmare. He sat up straight and tall on the bike, and he didn't fall off at all! He was so proud of himself, too. He remembered that last bike ride and he told me that he didn't fall off at all like he did last time. I told him that before he couldn't help it because of the tumor. He pedaled so fast that the screws holding one of his training wheels on came loose and fell off. Brian and I both yelled for him to stop, and Brian took off running to catch him. Even with losing a wheel Benjamin still didn't fall off!

When we got home from our walk he wanted to play catch with Brian, so they stayed outside for a bit. He can still pitch the ball quite well - he almost took Brian's head off with one pitch. Brian is going to work on catching with him, and Benjamin should be all set for t-ball this summer. That's his goal. He still throws the ball well and he bats well, but his catching is what they're going to focus on. Benjamin was all signed up for t-ball last year, but we had to pull him out. He really hasn't practiced at all in about a year, but he got right back into tonight. If he's up to it we would be thrilled to get him back on a team.

Benjamin is also planning on going to camp at the end of the summer, so he's got lots of great times to look forward to this summer. This beautiful weather we've been having (up in the 70's) has really given us all a taste of summer!

I'm happy to report that Benjamin did not have any bone pain at all last night or today, and he still hasn't gotten sick since this last chemo. He's on scheduled doses of anti-emetics for one more day, and then he only has to take that medicine if he's feeling nauseated. This week (after he's had a few days to adjust from having chemo) we're going to have him start taking his medicines orally to get ready for his tube to come out on Friday. If he's not able to take his medicines without getting sick then the tube might stay in a bit longer. We're going to keep good thoughts, though!!

Thank you all for checking in on him!

Love, Anne

Sunday, March 16, 2003 10:08 AM CST

Hi to everyone! I'm sorry to be so late in updating after Benjamin's last chemo. I tried to update it last night, and when I finished the whole thing I accidently lost it. Benjamin is fine, but he started having a lot of pain last night from one of his chemos (vincristine). We needed to call in to the hospital to check on it, and I guess I got flustered trying to sign off and pressed the wrong key. Anyway, I lost the update, and by the time we had everything sorted out with Benjamin I was too tired to start again. So I'll start fresh today - a beautiful day in Columbus - yesterday on our way home from the hospital we passed one of those signs that showed the temperature as 71 degrees. We've got windows open all over the house already. Its amazing how good it feels to leave this past cold winter behind us!!

First I'll update you on Benjamin's first professional hockey game that he went to on Thursday night with his Daddy. He was thrilled to have a night out with his Daddy all to himself! He had a wonderful time at the game, too. Thank you again to the Quinn's for thinking of him! They did have to leave early, though, because Benjamin is very sound sensitive. He was like that some before his surgery ( and now we wonder if that has always been due to the tumor ), but now he's extremely sensitive. The noise from the cheering crowds got to him after about half an hour and they decided to leave. The time he spent there was terrific for him, though! We bought tickets to take him to SpiderMan Live next weekend so we're hoping that this won't be as loud an event. We didn't even think about it when we bought the tickets, and he's really looking forward to it. We're just going to bring ear plugs and we'll see if that works.

Bright and Early Friday morning we all packed up and headed for Children's Hospital. Brian took the day off to come in with us this time because we had some questions about the chemo that we wanted to go over before starting. We wanted to make sure that his vincristine dose would be increased since his bilirubin counts are completely normal and have stayed normal without medication. For this round he received the vincristine at 75% of the dose. We definitely noticed the increase by the amount of pain Benjamin felt on Sat. morning and then again in the evening after we got home. Thankfully it can be managed quite well with morphine. We also wanted to find out how much his other chemos would be reduced due to the hearing loss he has experienced. This is such a difficult thing because we know that he needs to have the chemo (and as much of it as possible) as the first priority, but yet we dread hearing about further hearing loss. There is no question in our minds, of course, that the most important thing is that we have Benjamin, and we can deal with whatever hearing loss occurs. Its just really hard sometimes! I sat down with Benjamin last week and explained about the results of his last audiogram. I don't know if its because the idea of further hearing loss is down the road and not right in front of him now, but he doesn't seem concerned about it. He said that he's seen other children at the clinic wearing hearing aids and that's its no big deal. I told him that it might not happen, but if it does we will get him very tiny hearing aids that tuck down inside his ears and they will help him to hear just like always. I spoke with his child psychologist this weekend and she said that he seems to be dealing with all of this just fine and that she will stay on top of this topic with him. Benjamin ended up receiving all of his chemo medications at 75%. His next audiogram is in 5 weeks, so we will take that one step at a time.

A family that lives around the corner from us in our neighborhood is dealing with this same situation with their son - he is also named Benjamin. Their Benjamin was diagnosed two months after our Benjamin, and he is just a year younger. Although the boys have different types of cancer, they've experienced many of the same things - surgeries, chemo, radiation, hospital visits,yucky medicine, etc. We all happened to be admitted this time, and the boys had lots of fun together. They spent the last two days alternating between the playroom and each others rooms. It was also great for us parents to have the chance to visit with each other and catch up. After spending the whole winter inside with our only trips out being mostly to Children's, Benjamin was so excited to have a buddy, and I was thrilled to talk to have grown up friends to talk to! Now that the weather is getting nicer the boys have made plans to play together more often, and it will be nice that they can see each other outside of the hospital. They also played with another friend we met on the floor last spring, her name is Delaney. She was diagnosed just after our Benjamin was. The three of them had a great time decorating cookies for St. Patrick's Day on Friday night in the playroom. That was the Friday night activity that had been planned, and it was a big hit! The last time Benjamin was in for chemo the Friday night plan was BINGO, and he loved that. They try to do something fun that gets the kids out of their rooms. Sometimes its games, food, or arts and crafts. Benjamin always looks forward to this because he's always admitted on Fridays for his chemos.

We were discharged yesterday afternoon and it was wonderful to step outside into such a beautiful day. Benjamin had gone in wearing a winter coat and walked out wearing a short sleeve t-shirt!! He was still feeling good - just quite tired - by this time, and he still hadn't gotten sick at all. As a matter of fact, this is now Sunday morning and he still hasn't gotten sick!!! Usually he is sick once overnight on Friday and then a couple of times on Sat. We'll just keep watching closely for the next couple of days, but so far so good. He was in quite a bit of pain on Sat. morning from the vincristine - it causes bone pain. So he was given morphine a couple of times at the hospital. Then last night he was really having severe pain that wasn't being relieved by the morphine. Brian called in to the doctor on call, but shortly after he got off the phone Benjamin was finally getting some relief. The first couple of days after receiving vincristine are rough - we hate to see him feel that pain. He lays in bed and cries and asks to hold our hands. He cries "help me, help me" over and over until he feels the pain start to diminish. I think part of the problem is that he starts to feel the pain, and then he gets very upset and worked up. Its harder for him to calm down once he gets so upset. Dr. Tammy ( his psychologist ) has been working with him on ways to calm himself - like breathing in and out slowly and deeply. One night he was really worked up and he asked me to lay down next to him until he felt better. He was saying his prayers for the night so we tried to concentrate on that. He prayed for God to take away his pain, and the calmer and quieter he got the more the pain faded. Now he prays when his pain gets really bad. I'm so proud of him that he found his own way to deal with it, and what better way is there!

He's feeling very good today, and he's making plans to go out and help Daddy wash the car. I've got some painting to do inside today now that I can finally open up the house. We're not making drastic changes, but I told Brian that I just feel like I have to wipe away this past year and start things fresh. I just want to see things as bright and open - nothing dark. I can't believe that Benjamin's last scheduled chemo is almost here! It sounded like it would take a lifetime to get here when the timeline was first presented to us. The time did start to pick up, and focusing on Zachary's milestones and development brought so much comfort and joy to all of us. Keeping the focus on that and how much the boys can play together instead of on medicine and treatment really helped us. Zachary has always been able to bring a smile or giggle to Benjamin even at the roughest times when nothing else would cheer him. Benjamin was the first person Zachary smiled at and he was also the first person Zachary waved to. They very obviously love each other! Benjamin calls Zachary his "mini-me" and he loves when I dress Zachary in an outfit that either matches Benjamin's or is the same color as his. I've said so many times that I think the baby was the best medicine for the whole family.

Here's a litte update on Zachary. He's walking all over behind his little push-toy walker, but he's not quite ready to take his first steps on his own. His fourth tooth on top is just about through, too. Yesterday he started pointing to all of the things he's interested in. Today I was very surprised when he pointed to his Chicken Dance Elmo on the shelf and called him "Mo-mo." I said " do you want Elmo?" and he pointed to him and said "Mo-mo."

Well, that's all the latest and the greatest from the Jones family. Thank you so much for checking in on Benjamin and leaving little messages for him! I'll keep you posted on how the week is going.

Love, Anne

Thursday, March 13, 2003 4:08 PM CST

Hello to everybody! Benjamin is so excited because tonight he and his Daddy are going to a Columbus Blue Jackets hockey game. Brian got a call at work today from the Quinn family asking if he would like the two tickets. We met the Quinn's at Children's when their son was being treated, and recently the two boys got to ride in a limo with Tyler Wright (of the Blue Jackets) to a night out at Max and Irma's. It was a fundraiser for Tyler's organization Hats for Heroes, and the boys got to sit at a table with him to sign autographs. Benjamin was thrilled to be a part of it! Tyler Wright also donates Blue Jackets tickets to the hospital. The Quinn's received the tickets today, but because some of their family couldn't make it to the game tonight they had two extra tickets. Benjamin is so excited to have a night out, first of all, and especially a night out with his Daddy all to himself. Thank you so much to the Quinn's for inviting him!!! Benjamin can't wait to see Tyler Wright play and to go to his first professional hockey game.

I will update more when he's done with his next chemo. Please keep him in your prayers as he gets ready for this next round. He doesn't get nearly as sick as he used to, but its still no fun at all, and he misses being at home. We do know that some of the friends he's played with before are admitted at this time too, so hopefully they will all feel up to playing with each other and get to go home as soon as possible! Thank you for remembering him in your prayers.

Love, Anne

Tuesday, March 11, 2003 9:06 AM CST

Hi everyone!

There isn't much new to update. Benjamin is continuing to eat very well! He eats breakfast, lunch, dinner, and snacks in between each meal. Over the last few days his meal combinations have become better, too. He's not just living on jelly sandwiches and root beer - haha! He's getting braver to try new things each day as he's found out that he could keep down each new thing. As a matter of fact, he has kept everything down since starting the Reglan back when he first started the Megase (to spark the appetite). This has made a world of difference for him. He went from around last April until just the last couple of weeks with daily (sometimes multiple times) vomiting. Also the combination of chemo, not eating, and radiation damage (it repairs on its own over time) caused him to make lots of trips to the potty many times a day, and that lasted for about 7 months! Both of those problems were so uncomfortable for him, and if they persisted too frequently were a real worry for us about him dehydrating. To have everything functioning normally is fabulous! Benjamin has just made giant leaps these past few weeks. This week he goes back in for chemo so we know that he won't feel great for a couple of days, but we're hoping he can get right back to eating as soon as he's up to it. If he's able to do that we're going to ask for his feeding tube to be removed possibly next week. Benjamin is so excited for this. He still asks me if I think the tube makes him ugly. I told him that nothing could ever make him ugly because he's a sweet, beautiful boy - inside and out - and that this tube is just a temporary thing. The tube has been very upsetting for him because its so visible, and he worries about how other people will react to him. Anyway, he has now gone four nights without being hooked up to the overnight feedings, and he has done just fine!

Benjamin was very happy to lose another tooth over the weekend! He's now lost the two on the bottom (they're both in now) and the two on the top. He looks so cute!! It seems like every time Benjamin looses a tooth his little brother gains one. He thinks the Tooth Fairy has worked it out that way - take one from Benjamin and give one to Zachary. Zachary now has two teeth on the bottom and three up top with a fourth one about to break through. They are playing together right now in Zachary's little gated off play area. Benjamin is trying to build a mountain of toys to teach Zachary how to make an escape. I hope Zachary doesn't pick up on these ideas too quickly! Zachary is very close to walking on his own. He has a little push-toy that he can walk behind, and he's getting braver about trying to let go and try on his own. No success yet, but that's probably a good thing because once he walks our trips to Children's for clinic visits and chemo stays will get a whole lot more interesting.

Thank you for checking in on Benjamin! He loves all of the messages! I will update more when he goes in for chemo to let you know how he's doing with it.

Love, Anne

Friday, March 7, 2003 3:34 PM CST

Hi everyone! I won't keep you in suspense - his MRI was totally clear of any sign of tumor! It was a very long day because of all the tests Benjamin had, but everyone is doing just fine.

Benjamin's first test of the day was his renal scan - the one he hates to have because of the "pokes." At least that one was over first thing. He was scared, but he did just great! We don't have the results back on that one yet (that's the only one we didn't hear back on today), but when we talked to Dr. Olshefski before leaving this afternoon he wasn't concerned about it at all. He said of everything today that it was no big deal. Hopefully we will hear something on Monday about it. Benjamin did get some good news about the renal scans, though. That might have been his last one. Dr. Olshefski said that we could try just doing a urine collection at home for the 24 hours prior and they would just run the test on the sample. This would be a wonderful thing for Benjamin! He's all for it, so for the next round of chemo we're going to try that.

After the scan we headed up to the clinic where we waited until it was time to start the first blood draw. Then his blood is drawn exactly every half hour for the next two hours. Benjamin was very tired already, and he and Daddy took a little nap in one of the big comfy chairs in the back. Before the first blood draw he was weighed and measured and had his physical. He has gained about two pounds since last week, and we aren't supposed to hook him up at night for the overnight feedings for the next couple weeks just to see how he does. The tube will stay in place until we know for sure how he will do. Dr. Olshefski asked how we felt about having it removed now, but we asked to keep it in at least until he gets past the next chemo just to be on the safe side. The thought of the tube coming out so soon is wonderful though. Dr. Olshefski and Suzanne (his nurse practitioner) were so thrilled with his progress at eating since last week. He will stay on the Megase for some time, but his dose may get weaned back in the next few weeks because he's actually getting half an adult dose.

In between blood draws we scooted upstairs to Audiology for Benjamin's hearing test. Unfortunately we didn't receive the news we were hoping for up there. His hearing for conversations and his own speech is still good and hasn't changed, but there was a significant hearing loss for the range of high pitch frequency. The loss is permanent and is in both ears. They will monitor this closely, but if he loses much more its possible that he might need hearing aids. Even though he has grown up hearing and is able to speak, he would start to talk very loudly because to him it would sound like his own speech is muffled (like when you have a head cold). He would also lose the ability to form the sounds correctly for some letters like "s" and "t". The audiologist told me that he would hear, and say, the word "best" as "beh". Even though we had been warned that losing this was an almost certainty I guess in my heart I didn't really believe it would happen. We were a little taken aback when we heard the news, but we both agreed that if we walked out of the hospital today with that being our worst news of the day we could deal with that. I feel sad that he has lost something that he can't get back, and I'm scared of any future loss, but these are things we can (and
he can) live with. Our biggest priority was the MRI!

The MRI was the last test of the day, and fortunately for Benjamin (who was exhausted by this point) it meant nap time. We had thought it would be a scan of both the brain and spinal cord, but because of the fact that originally the spine had been clear and his spinal fluid had tested clear back at diagnosis they decided to only scan his brain. This really shortened the time of his test. It took close to an hour, and he did wake up in the middle of it. He didn't get upset, but he was a little worried and he asked for more "sleepy medicine." He slept peacefully throughout the rest of the scan. After the test they told us we would get the results on MONDAY. We immediately asked if there was any way we could at least find out a preliminary result, if not the whole results, today. They told us to go back to the clinic and see if Dr. Olshefski can get the results for us today. We went back up and settled ourselves in for a long wait only to be pleasantly surprised by Dr. Olshefski who had our results in about five minutes. He laughed and said that the radiologists downstairs must have wanted out as much as everyone else did on Friday, and they read it right away and had our results for us immediately. What a relief!! He came out with a big grin on his face and said "everything's good." The doctors crack me up because they're always so understated while the parents are whooping it up! We packed up and headed for home right away.

On our way out we stopped to visit our friend Karen who works at the information desk at the hospital. We told her Benjamin's happy news, and she was so happy she put some money in Zachary's coat pocket and told him to take his brother out for something special with his "angel money." We thought that was such a sweet gesture, and we thanked her and told her that dinner was on Zachary tonight! Benjamin wasn't allowed to eat today because of all his tests so he is planning on some McDonald's or Bob Evans tonight. Karen said that she was going to Bob Evans with her sister tonight, so we told her that we would think of her while we have our Bob Evans.

Thank you so much for all of your prayers for Benjamin! We can really feel all of the love and support from everyone even though we're far away!

Love, Anne

Thursday, March 6, 2003 10:20 AM CST

Hi everyone!

There really isn't much new to report, but I will definitely update you all as soon as we get home from Children's tomorrow after Benjamin's MRI. We're very much looking forward to tomorrow being over. This is just going to be part of life every three months for some time. During his time in between I don't think about the scans too often because things feel pretty normal and almost back to our routine. Neither Brian or I have been sleeping well all this week. The other night we were both up watching TV at around 12:30 - 1:00am. During the day things are so busy that there isn't much time to think about the scan, but at night when the kids are sleeping and the house is quiet we're both thinking too much. At least we do have the reassurance going into this MRI that at his CAT scan two weeks ago everything looked good. The MRI has much better detail, but Brian told me that on that awful morning last May 15th when Benjamin was diagnosed Brian saw on the CAT scan the tumor and the two little nodules. He said that's he's no doctor, but you could very plainly see everything on that first test before they even did the MRI. This tells us at least there's nothing visible that a CAT scan would pick up and hopefully we'll hear that the MRI is clear as well. Please remember Benjamin in your prayers for tomorrow. He feels absolutely no anxiety over the testing, though, which is so great. He knows that he's having the MRI, but he also knows that he will have "the sleepy medicine" as he calls it and he will nap through the whole thing. It takes about 45 minutes to scan the brain and another 45 minutes to scan his spinal cord so he will be out for nearly two hours. They have to scan both because stray cells can travel through the CF fluid that runs throughout the brain and spinal column. He is also having a renal scan in the morning, and he doesn't know about that one yet. He wants me to tell him about those only on the mornings that they happen. If he knows too far in advance about those he worries himself sick. He has this scan to be sure that his kidneys havn't been damaged by chemo he's already received. One of the chemos he is on can be very damaging so they do a baseline scan at the beginning before any chemo is done and then before each next round they scan again. If they see any sign of damage they know they have to cut the dose. So far every scan has come back with good results so we're hoping to hear the same thing tomorrow. The reason he doesn't like this test is because they have to start an IV in his hand. Because he has a broviac implanted in his chest he never has to have shots or IV's, but for this test they have to start an IV either in the hand or the foot because he's injected with radioactive dye. The "pokes" scare him very much, so if he knows ahead of time when the renal scan is he gets sick to his stomach worrying. He told me that knowing the morning its going to happen is enough notice - I can't get over how brave this child is! Once the IV is in the hard part is over and the rest of the test is just about being scanned inside this big machine. That part doesn't bother him anymore. Then we go up to the clinic and he has his blood drawn every half hour exactly for the next couple of hours. Tomorrow is also a regular clinic day so we will find out what his counts are as well. I have to look at my calendar because tomorrow might also be his audiology test, too. He has those before each round of chemo because another one of the chemos he's on may damage his hearing. This chemo effects hearing things at high pitch frequencies. Dr. Olshefski told us to expect for Benjamin to lose that. He said that its pretty likely that he wouldn't be able to hear things like an ambulance siren when its far away and certain musical notes and anything that would be at pitch or tone. He said that if they notice damage to his hearing they would adjust the dosage of his chemo so that he wouldn't have a comlete hearing loss, so that was reassuring. Hearing about the possibilities of these side effects happening ( and these are some of the better ones, if you can believe that) is very hard as a parent, but we just want to have Benjamin here with us. That's what's most important! So far his hearing tests have shown perfect hearing, so we just need to get through these next two treatments. If he is going to have damage from the chemo we will know about it pretty quickly. Its possible that even if he gets through this part with no damage he could have damage to his hearing because of the radiation, but so far things look good and we will just take it one step at a time. Benjamin doesn't know about these side effects because we don't want to worry him unnecessarily. These things might not even happen, and Benjamin is an anxious type of child. He knows that we do these tests just to make sure his kidneys and his hearing look fine. He really doesn't worry that they won't be fine.

Brian is taking the day off tomorrow to come with us for all of the tests so I'm very happy about that. It will be a long day, but I will be sure to send out an update when we get home. Please say an extra prayer for Benjamin tonight and tomorrow! Thank you to all!

Love, Anne

Tuesday, March 4, 2003 5:05 PM CST

Benjamin has had a busy day today. He had school with Mrs. Brinda, and he was so happy because she brought some little reading books to start with him. She said that he had a great day and worked very hard.

Our next stop was Children's Hospital for PT with Kathy and OT with Karen. Kathy stretched Benjamin's legs out and then measured his range of motion and happily she is seeing gains. We've been pleased that he showed quite a bit of improvement and then has maintained that for the last several weeks. Today showed more improvement. When Benjamin starts his next round of chemo the doctor will be upping his dose of Vincristine (which is the chemo that caused his problems with footdrop and loss of full range of motion and mobility) so we're very hopeful that he doesn't slide back. At least if he does we know that with hard work he can get it back again. He's been receiving the Vincristine at 50% of the dosage because of the elevated bilirubin levels he had before. Thankfully, those levels have stayed down since changing chemo protocols and dropping the TPN's (feedings that go through the tubes in his chest directly into his veins). I don't want him to have the foot drop problems or anything else, but I'm really glad that his chemo doses will go back to where they should be for the protocol. We can deal with stretching and exercising when the chemo is done - we just want him to get the maximum benefit from the medicine. Anyway, he had a ball with Kathy! They played ring toss, basketball, and catch with a velcro ball set.

Next up was OT with Karen ( she's another wonderful person we've been fortunate to have working with Benjamin). This was his first OT for several weeks because of his cast. Now that he's free and clear of that he could get back to business. For this he does a lot of work with his hands and fingers for his fine motor skills. After his surgery back in May he was only able to use his right hand completely. He had a tremor in his left hand and arm, and he was very frustrated because he couldn't make his hand and arm do what he wanted. It was kind of like how your hand moves if its fallen asleep and you have the "pins and needles." They told us the best medicine (early on) would be for him to play video games (which was music to his ears!) as much as possible. At first he could only work the controller with his right hand and he moved it back and forth to compensate for the left hand. Now he works the controller like a pro ( just ask Gramma Beebe - she and my Dad stayed with us all summer to help us get Benjamin and the baby back and forth to our many, many appointments at Children's and during radiation at OSU daily. Benjamin had my Mom playing video games all day, every day!) Now he's working on tying his shoes, doing buttons and snaps, and improving the strength in both hands.
They finished up with a game of baseball in the hallway which he said he needed to warm up for playing outside with his Dad tonight.

That's where he is right now. We've had a little warm-up here to around 50 degrees so Benjamin wanted to go out to play when his Dad came home. I can't tell you how good it feels to have him back out there playing! Things aren't totally normal around here, and they probably won't ever be the same as they were before he was diagnosed, but our "new normal" is really pretty good! With his eyelashes, eyebrows, and hair back he looks like himself again (which makes him much more comfortable), he's eating again, he can do alot of things he used to do again, I don't find myself thinking so much about everything he's been through. His tutor, Mrs. Brinda, said that he just looks like he's feeling good and that's the best blessing!

Love, Anne

P.S. Zachary can stand up all by himself now - he doesn't have to pull himself up on furniture! His new tooth on top is just about through now too. I don't know who's happier -him or us! We won't be able to call him "Fang" much longer once that tooth comes through some more.

Sunday, March 2, 2003 7:57 PM CST

Hi everyone! I just wanted to send out a quick little update. First, I mistakenly wrote the last time that we were hoping for Benjamin's bilirubin to get up to the 75,000 level. Boy, did I goof on that! We want his PLATELETS to get that high. We'd be in major trouble if his bilirubin got that high. My Mom caught my goof-up and said "I think you might have typed something that you did'nt mean to." We want his bilirubin to stay below .1, and for his platelets to go up 75,000.

The other thing I wanted to tell everyone is that Benjamin is eating!! This morning he got up and asked for breakfast right away. He had half a donut and something to drink. Then about an hour later he had a banana nut muffin. A little while later he had Kool-Aid and then water. This afternoon he ate 3 Tim-bits donuts and drank some water. Best of all, for dinner he had a whole bowl of vegetable soup, 3 crackers, half a piece of bread to dip in the soup, a glass of root beer, and then topped it off a little later with a whole container of yogurt!! I know, some of his food combinations don't sound that appetizing, but they told us at the hospital to give him anything he asks for, no matter how crazy it sounds. They said that if he gets up in the middle of the night asking for brownies, then get up and make a pan of brownies. This is the most Benjamin has eaten since before his surgery back on May 16, 2002! And everything has stayed down so far. Thank God for Megase!! We have been so worried for so long about getting him to eat again, so today has been a tremendous relief. Hopefully this is the beginning of a trend, and we can get that NJ-tube out of him.

Thank you to everyone who has checked in on him and also to everyone who has left a message for him in his guest book. He gets so excited every time he sees a new message. We also want to thank all of the kids at Gramma's high school for writing to him. He thinks its the coolest thing that "big high school kids" are thinking of him.

Love, Anne

Saturday, March 1, 2003 10:25 AM CST

Benjamin had his weekly clinic appt. yesterday and it was full of great news! All of his counts have come up (except for the bilirubin levels in his liver - which we want to stay down), so we're hoping he stays on track for his next round of chemo. His ANC count which has to be above 500 to be allowed out and around was 3,120!!! We were also so happy to see that his platelets have started rising. They were at 47,000 last Friday and this Friday they had come up to 56,000. Ideally the doctors would like that level to be at 75,000 to start chemo, but they went ahead with it last time with the level in the mid 60,000 range. We're just praying for the bilirubin to go at least that far again, and Suzanne (Benjamin's nurse practitioner) said she wouldn't be surprised if they made it up to the 75,000 level this time.

We also had a visit to Dr. Beebe's office to have Benjamin's cast removed - yeah!! Dr. Beebe said that his arm has healed very nicely and he showed us on the x-ray where new bone has grown. Benjamin is free and clear and didn't even need a splint. The first thing Benjamin did was sit there and rub and rub and rub his arm. Steve, the man who puts on and takes off the casts, told him just to rub and not to scratch. So Benjamin rubbed that arm for about ten minutes. We were also very happy to see that the lost pen cap incident from two nights before hadn't caused any problems. He didn't have any scratches or cuts so that was another relief.

My Mom came down on Thursday night to get her "grandchildren fix" and she was a tremendous help for us to get in and out of all of our appointments on Fri. Getting the two of them bundled up and in and out of the hospital and all of the stops in between can be a lot of maneuvering sometimes so it was so nice to have her help and especially to have her company! The boys had a great time with Gramma, too!

Today we were so pleased to have Benjamin ask if Brian would get donuts for breakfast. Brian headed off to Tim Horton's and brought back Benjamin's favorite kind of donut - the sprinkled covered kind - (which he hasn't eaten since before he was diagnosed). Benjamin had a glass of lemonade and he ate probably half of that donut!! This was a giant step, for one reason, just because he ate it, and for another reason because it was so sweet. Benjamin hasn't been able to tolerate very sweet tasting things since his surgery and chemo first started. Every kid loves donuts, cookies, and other sweet stuff, but as soon as he ate those kinds of things before he would get sick. Even if he just drank something like fruit punch it would make him sick. The megase really seems to be working! Benjamin is working with a wonderful child psychologist at Children's now, too (Tammy), and she suggested at his appt. on Fri. that we have him come to the table when we eat - even if he only has something to drink or just a bite of food. Hopefully with the combination of Tammy's help and starting the megase we can get him back on track and eating normally again. We know it will be a slow process though because we are coming up on a year (in May) since he's eaten normally. One step at a time!

Well, its Saturday morning and we're just looking forward to a relaxing weekend. We were sorry to see Gramma go this morning. Benjamin told her that when she retires in June she and Boppa (the name he's called my Dad since he was a baby) should move down here. He would love to get all of his family in Ashtabula down here. Every time my parents or Brian's parents visit he wishes that they lived here or that we lived there. He says the same thing after visits with all of his aunts and uncles too and his little cousin, Ashley. She is four years old and they have a ball together! His Aunt Kate and her boyfriend Greg now live even further away in Chicago, but we may get to see her soon for a visit so we're looking forward to that. We've always missed living closer to our family since we're the only ones down here, and this past year we've missed everybody even more. Once Benjamin is done with chemo and everything, though, we plan to catch up on all that missed time over the last year and have lots of visits this summer. We're also very excited because my Aunt and Uncle from MA are planning a visit in a few months. They were so wonderful and dropped everything when Benjamin was first diagnosed to come out and help us for about three weeks until my parents could come back down at the end of the school year. All of these visits coming up really give Benjamin and us something positive to think about and good times to look forward to.

Thank you to everyone for checking in on Benjamin! We really appreciate it more than you can know.

Love, Anne

Thursday, February 27, 2003 12:32 AM CST

Well, I thought we were going to have to make a trip to Children's Hospital last night at midnight, but not for a medical emergency. Benjamin's arm was very itchy from his cast (Benjamin has a buckle fracture in his left arm, and he now has a short cast that comes up to just below his elbow. He had a big cast that went all the way up to just below his armpit, but that one came off two weeks ago. This little cast should come off tomorrow.) and he asked Daddy for something to use for his "itcher" as he calls it. He used a pen with a soft rounded tip which worked well until the plastic tip came off inside the cast and was poking his arm. Brian tried to get the tip back out, but it was really lodged in there. Then we got out two chopsticks and Benjamin and I worked at the cap from both ends of the cast until we hooked it on one chopstick and fished it out. That poor kid was so relieved. He said "I thought it would be stuck in my cast forever!" I told him that even if we couldn't get it out the cast would be coming off on Fri., and I was sure that they could probably take it off a day early if necessary to get the cap out. We're not supposed to use anything that might be too sharp for "itchers" because if he gets a cut and it gets infected inside the cast they won't know where the source of infection is coming from. The doctors said that they've had to cut casts off of kids on chemo when they've searched for infection but can't find it. The kids come in with fevers, but no one knows if its due to some kind of bug or from something they can't see under the cast. The very nice man who put Benjamin's cast on would probably cringe , but we didn't know what else to do to get the cap out. We were extremely careful not let it scrape against his skin, but just to use it to "feel" for the pen cap. I told him that if he felt any soreness in his arm today we would go right in and have the cast taken off to be safe. We are also lucky that his counts have remained quite high since his last chemo so that means his body is able to fight infection on its own. We will all be glad when the cast comes off tomorrow morning!

Benjamin has had a great week of school! He only has school three days a week for an hour a day, but he and Mrs. Brinda really get a lot done! He's doing really well with his flash cards of reading words and Mrs. Brinda told us that when he finishes these last few flash cards his kindergarten teacher, Mrs. Atwell, has little reading books to send home for him. He's really excited about that! We're noticing that his handwriting seems to be improving as well. He's been working a little bit extra on that in the evenings and on the weekends, and the pay-off is starting to show.

We started him on Megase three days ago to try to spark his appetite and I think its slowly beginning to take effect. Dr. Olshefski said that it would be a few days before it would kick in. Last night Benjamin asked for a bowl of cereal and he ate about half of it. I know that doesn't sound like much at all, and its really not, but for a kid who at times has gone for weeks straight barely even drinking that was a good start. For the past couple of weeks he's been having at least 3 - 4 glasses of some kind of drink every day, but not eating anything. If he could just eat a little something at each meal time along with the drink that would really help his stomach get used to food again and stretch out some. His stomach has to be so tiny because he has been on some form of outside nutrition since last June after he had his very first dose of chemo. At the time they told us that alot of the kids completely shut down and quit eating and Benjamin was one of those kids. He was initially started on TPN overnight feedings, but after such a long time on those in combination with some of chemos that are hard on the liver Benjamin's bilirubin levels in his liver became elevated. For the last few weeks (since switching from TPN to the NJ-tube feedings) his bilirubin levels steadily lowered and have remained normal. This is great news because now some of chemos that had to be cut in dosages can be given at higher doses now. We certainly don't like the fact that Benjamin has to be on chemo, but if he does we want to get the maximum effects of killing any bad cells from it. He also started the new medicine Reglan for the AM vomiting and he's gone two days now without vomiting!! I know that its not a pleasant topic, but for this poor kid who has thrown up daily (sometimes multiple times a day) since last April, this is a great step. He went for a period of time where the vomiting did taper off a bit, but the fact that he doesn't eat at all and doesn't get food down in his belly to absorb the stomach acids just doesn't help with the getting sick. Maybe this Reglan will do the trick until Benjamin can eat enough on his own and get his little belly functioning well on its own. Some days it feels like one step forward and then two steps back, but the last two days have definitely been giant steps forward!!

Other than that he's really had a good week so far. The fact that Brian and I are finding ourselves continually telling him to slow down and stop running (while secretly smiling to ourselves and each other) must be a good thing! I think he can feel the difference in his body too that his legs are moving well and are not stiff or causing him to stumble. He says "look at me, look at me run!", and its great to see him run! We have to keep telling him to try to take it easy though because we don't want to exchange this cast for a new one.

Love, Anne

Monday, February 24, 2003 4:23 PM CST

Well, I guess I shouldn't have said yesterday that this week should be a quiet week. Everything is fine, but we had a little bit of a scare today. As most of you who know Benjamin probably know, his initial symptom of any problem was morning vomiting. After his brain surgery this continues for several months and then tapered off. For the past week and half he's been having the morning vomiting problem again, and we havn't been able to figure out why. At his appt. last Fri. I talked about it with Dr. O. and he felt that as long as Benjamin wasn't having headaches or any other symptoms along with it we could wait until his next MRI which is scheduled for March 7th. Over the weekend the morning vomiting continued and then this morning he was sick a few times. We knew that he didn't have a virus or anything because, as was the case before, he is completely fine both before and after he gets sick. I called his nurse practitioner, Suzanne ( She is the best! Whenever we have any concerns she takes care of everything. ) , because we were concerned about how much fluids he was losing since he really doesn't take alot of fluids in on his own. She talked to Dr. Olshefski and called back with the recommendation that he come in for a CAT scan. Everything is fine, thank God! The shunt in his head looks fine and is working properly. He had the shunt surgery to drain fluid from his brain down to his belly. We have to stay right on top of symptoms like vomiting and headaches because that could indicate that the shunt isn't working. At the time the shunt was placed he had a severe build-up of fluid in his brain. Patients who have this problem must have the fluid drained as soon as possible because the condition can quickly become life threatening. This news that everything looks good helps for our peace of mind as well going into the next MRI. Benjamin has MRI's every three months to check for any sign of tumor recurrence. Vomiting and headaches can also be symptoms of that too, so needless to say those symptoms always worry us. The MRI's are much more detailed than the CAT scans, but at least we know the scan today didn't pick up any signs of trouble. Please remember Benjamin in your prayers on March 7th when he goes in for his next MRI. It is a stressful day for us, but thankfully he doesn't realize the importance of these tests. He sees it as just little check-ups. I'm glad he doesn't feel the weight of the worry. As for the reason for the AM vomiting again they think that it could be due to the fact that Benjamin hasn't eaten (or drank much, for that matter) on his own in so long that his belly may be having a tough time adjusting to having food and drink down in there again. He will be starting on a new medication to help food move through his system a little quicker instead of sitting down there. Hopefully this will do the trick! Benjamin was very brave today, too. He insisted on going in for his scan all on his own. He asked that we wait outside because he wanted to do it. He has become so independent over these last nine months! When we go to the clinic for his weekly appt. he usually argues with me over whether I can come back with him or not. In the beginning when he was first diagnosed he kind of shut down for a while and wouldn't do anything unless we were right there with - even then he fought whatever the doctors wanted to do. He has really emerged from all of this with his sense of humor intact and an even stronger sense of self-confidence. We've noticed this about many of the kids up there, too. They're really tough, and they have to be, but they're still so sweet.

Thank you to everyone who has visited his website to check on him!

Love, Anne

Sunday, February 23, 2003 6:11 PM CST

Hi everyone! Benjamin has had a very nice weekend! He's felt good all weekend and he's had a lot of fun checking in on his web site. He's been so excited to see all of the activity on it. He's spent the weekend playing with little Zachary - who has a new tooth (that makes #4!) - and doing a little school work. His tutor, Nancy Brinda, is just wonderful! She comes to our house three times a week for an hour a day to work with Benjamin. He's gotten very attached to her! She also comes to see him if he's in the hospital which is great. He keeps up with his work and she plays with him for a bit in the playroom. Benjamin has been working so hard with school and he got his report card last week and it was all S's which in kindergarten at his school is all A's! He was really excited. They want him to work on his handwriting, and we've been trying to go over that a little bit each night. Unfortunately because of where his tumor was and because of some of his treatment his handwriting is not the way it used to be. Some days its better than others depending on the strength in his hand. It also sometimes depends on how motivated he is to produce neat work. Sometimes (like a typical, busy little boy) he hurries through so he can move on to the next thing. We figured that the handwriting is something that we can work on, though, and were so excited about the report card. The doctors have to tell parents before radiation treatments and chemo treatments that there is no way to tell what kind of damage these treatments might do. We know to expect some type or types of learning disabilities at any point over the next few years, but all we can do is focus on right now and be pleased with his great progress!

This coming week looks like a quiet one. He has appt.'s at Children's twice this week, but other than that we're hoping for business as usual.

Thank you to everyone who has checked in to see how he's doing! Your prayers and concern mean so much to us!

Love, Anne

Friday, February 21, 2003 2:45 PM CST

Hi to everyone! Benjamin has a message: Me and Daddy have a video game of wrestling on the computer. I want to put a picture of us playing it on my page. Daddy will try this weekend. Thank you for my messages! I didn't think that I would get that much. Bye!

Benjamin was so excited about all of his messages that were sent to him - thank you to everyone! His eyes got so big when he saw that he already had several messages in the first day. When we first talked about starting his web page he thought at first that he wouldn't have any messages. He doesn't really understand how many people are thinking of him and pulling for him. Seeing it in print really made him feel special.

Benjamin had his clinic appt. today and all was well. His counts were very good, but his platelets were low. The chemo that he is on right now does cause his platelets to drop quite a bit, and that caused him to be delayed going into the last chemo. We're hopeful that his platelets are at their lowest point now and will be on their way back up very soon. Benjamin's doctor, Dr. Olshefski, prescribed a medication today to try to spark his appetite. Benjamin has an NJ-tube to feed him right now (which he is not happy about), but he's really not eating much on his own. The tube needs to come out at some point in the near future, but we could have some difficulties if Benjamin can't eat enough to sustain himself. We were given this new medication to try for the next 4-8 weeks, and we hope it will make the difference. The subject of a G-tube was brought up (a tube that would go directly into his stomach instead of the one that goes down his throat), and Benjamin immediately burst into tears. Once he understood that this was just one of the ways to help people eat and that it was NOT something that was planned for him he felt better.

Benjamin also had physical therapy today - which he loves! His therapist, Kathy, said that he has done really well since this last chemo when he received Vincristine. One of the side effects is weakness in muscles and coordination and foot-drop (not being able to lift your foot up). He had quite a problem with the foot-drop over the summer and fall, but thankfully he's done much better during these last two rounds of chemo. Benjamin really likes Kathy alot, and he looks forward to going to PT every other week. He works so hard, but he has a great time so Kathy really keeps him motivated. She is one of the many wonderful people we have been fortunate to meet throughout the past nine months.

Thank you to everyone who visited Benjamin's new web page and to all of you who sent messages to him. It was terrific to see his face light up the way it did!

Thursday, February 20, 2003 2:45 PM CST

This is our first entry for our son, Benjamin. He is a bright, beautiful, and active six year old who was diagnosed with a brain tumor (medulloblastoma) on May 15, 2002. He had surgery on May 16, 2002 and the entire tumor was successfully removed. Benjamin completed radiation therapy last summer and the two small nodules that remained were dissolved. He is currently receiving chemotherapy and his last scheduled treatment should be sometime at the end of April 2003. We welcome all responses from family, friends, and all those who would like to send messages of support for Benjamin. Our family has received so many prayers and so much support and we believe that has made such a difference. Benjamin is being tutored at home for kindergarten this year, and his interests are video games, superheroes, and playing with his baby brother,Zachary, who was not quite a month old at the time of Benjamin's diagnosis. Please keep Benjamin in your prayers as he continues with his treatment. Benjamin would like to say "hi" to everyone and he would love to hear from you!

Thursday, February 20, 2003 2:37 PM CST

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