History

Wednesday, December 20, 2006 3:55 PM CST

Good afternoon! Thanks so much for all the great sign-ins on the guest book! Thanks too for all your prayers for good results yesterday - they worked! All of Jake's scans look good and we have reached the 3 year mark of him being done with treatment! It feels good, although it doesn't bring a wave of security. I don't know if we will ever feel safe, but like I said it just feels good. Jake will continue with his every 3 month scans for another year as his treatment was part of a clinical trial. The last year we move to every 6 months. Josh and Charlie's check ups were good yesterday too and it was fun to be in the clinic with them again. All of Jake's counts looked good, although there is some concern about his creatin (sp?) level which was a little high. This helps them keep track of his kidney function. He also didn't show much growth this quarter, so next check-up in March we will measure hormone levels and check that creatin level again. I have not heard anything yet on the results of his echo and ekg they did on his heart yesterday. I'm sure they are ok. With his treatment, Jake is at risk of heart and kidney failure, so that is why those things are being checked in the first place. Hopefully someday there will be treatments that aren't so toxic to these kids. That ad for the Nebraska Medical Center always disturbs me when I see it - the one with the kid who survived cancer when he was little, but then needed a heart transplant when he was in his teens. We try not to worry about all these side effects and the risk for secondary cancers on top of worrying about the first cancer coming back, but that is easier said than done.

I put some old pics of Jake on treatment on the photo page as I think sometimes it's a good to remember. I know that is something I hope I can always hold onto - perspective of other problems that may come our way - that it's much better than being up on the floor of Children's Hospital watching my child fight cancer or visiting his gravestone. We really just have to appreciate every single day. Make everyday a day that you stand for something good, make others feel good in the process, apologize to them when you don't and just enjoy the whole journey.

As you can see from the front page photo, we were so privledged to be there when the Nebraska Husker Volleyball team won the National Championship here in Omaha last weekend. What an awesome game - the boys loved it and had so much fun! Go Huskers!!!

We are glad to have scans behind us and are looking forward to the holiday festivities. Please keep in your prayers the families that are so heavy on our hearts this Christmas that are spending the holidays without their children - the list is so long. Lizzie's family is in the forefront of our minds, and we pray so for their healing. Please continue to keep Tanner in your prayers as she wages on with her battle.

Thanks again for the sign-ins and for checking on us for the past 4 years. It is amazing to me the following that we still have on this site. Amazing and so wonderful. Thank you!

Happy Holidays!

Love,
Kellie, Steve, Jake, Brandon and Benny :~)

Tuesday, December 19, 2006 5:33 PM CST

Hello! Sorry for the delay - it was a long day up at the hospital, but all is well. All the scans look good. We don't have results on Jake's echo/ekg that was done, but the scan reports are all in and no changes! I will update more later with pictures! Thankfully we are heading out the door for Jake's chorus concert! Thanks for the prayers!!! Kellie :~)

Friday, December 8, 2006 6:14 PM CST

Hello! I wanted to get on here and tell everyone about the Compassionate Friends International candle lighting event. It is this Sunday, December 10th at 7. Leave the candles lit for an hour in memory of the children that have gone before us. Compassionate Friends is a support group for parents who have lost their children. I had the privledge of meeting the Omaha chapter's director last week and she told me about this event. What a great lady running a wonderful organization. Here in Omaha, there is a program on that night at the Holiday Inn Central at 72nd and Grover. Registration starts at 6 and the program is at 7. Harold Ivan Smith is speaking - he is the author of the book, "A Decembered Grief-Living with Loss While Others are Celebrating". The candle lighting will take place there too. For more information you can go to www.tcfomaha.org. We have a long list of amazing kids that we will be lighting a candle for that night.

All is well here. The boys are doing great. We went to the Candlelighter's (childhood cancer support group)Christmas party last night and had a great time. Ben even got brave enough to go stand by Santa - with me holding him of course. He has talked about it all day.

We're getting the two-weeks-before-scans jitters around here. Such a love/hate relationship we have with scans these days. You just can never feel safe, and scans are just a necessary reminder of that. Not that we need the reminder, it is on our minds all the time - that # lion in the house. We found out last night that the scans on the 19th will be a reunion of sorts for some of the "Diagnosed Class of 2003" - Josh, Charlie and Paige will all be there that day too! Hopefully it will be a good day of friendship and good news! Please keep all of these kiddos in your prayers!

Tanner is doing better, but continues to need your prayers. Her dad just started a new business that is doing beautiful decorative concrete on floors, countertops and patios. The countertops are amazing and look just like granite without the steep price tag! The name of the company is Nebraska Concrete Designs. You can find his contact info at www.neconcretedesigns.com along with picture of the amazing work he does.

Thanks for checking in on us and we hope you make it a great day! Like Steve always tells the boys, "Life is about choices." If you choose to dwell on the bad things, that will be your life. You can just as easily choose to be enthusiastic about your life - challenges and all! Living your life focused on the bad is such a disservice to the sick kids and adults that have or are fighting so hard to have a chance at life. You never have to look far to see suffering far worse than your own - keep things in perspective. There are websites after websites of parents grieving for their children or watching their child die. What they wouldn't give to have your problems! I'll step off my soapbox now and say goodbye. Thanks again for stopping by!

Love up the kiddos in your life, and please don't forget to go give blood!

Love,
Kellie, Steve, Jake, Brandon and Benny Boo :~)

Monday, November 27, 2006 9:32 AM CST

Goodmorning! New photos on the photo page. Thanks for stopping in to check on our family! We do so appreciate all the support from so many over the years!

We had a great Thanksgiving! With the weather being so unseasonably nice, we decided to forgo the traditional Thanksgiving dinner and have a Thanksgiving breakfast and then head out to the lake. Tanner's family, the Hartnetts, my bro and his kids, Steve's bro and his fiance, Steve's dad and grandma joined us in the morning and then most of us treked out to the lake for 4-wheeling, hot dog roasting, a game of sand football and smore making. It was a great day!

This weekend we did some major work around the house. The boys decided they wanted to room together, so we moved clothes and beds in one of their rooms and the other has become a play room. It's been two nights and so far so good! It was good to get things cleaned out of their rooms and vacuum under furniture that hadn't been moved in a long time. Friday we took the older boys to the Nebraska game and it was a beautiful day. Jake and Brandon helped me get the tree and village up yesterday.

Jake's scans got switched to the 19th of December. It looks like we will be in with Josh for those as he is due for scans too! Hopefully it will be an easy day with good results for all of us. It's really the only Christmas present we want. This will mark 3 years of Jake's remission since treatment ended. Please keep us and the Larson's in your prayers.

Please also keep Tanner and her family in your prayers. Tanner has a new tumor that is affecting her vision and now they are radiating two spots in her head. She goes everyday for 6 weeks for radiation. She is an amazing kid. She comes over here with her half a head of hair, many railroad track scars dotting her head, facial paralysis and keeping one of her eyes closed because of the new tumor - all that and it does not stop her one bit. She plays and smiles and makes the most of every moment. She defines toughness and knows how to take the day head on. The other night her and her dad came over and she plopped down between Brandon and Jake and said, "Man, I've had a busy day. I had three MRI's, a mask fitting, radiaiton and a planning CT." Jake and Brandon with total understanding said, "Wow, that was a busy day!" They go on to discuss her new tumor and all that she has been through like they are discussing what was for school lunch and what they played at recess. Please visit her site and leave her family a message of encouragement (link above). Tell them Jake sent you.

Hope you make it a good day and love up those kiddos!
Please, please go give blood!!!!!

Love,
Kellie, Steve, Jake, Brandon and Benny :~)

Thursday, November 9, 2006 10:02 AM CST

Update, Saturday, November 18th - I had to get on here and tell everyone to please go read Lizzie Stratton's mom's journal entry today. If a new journal is up, go to the past journal entries to read the one dated for November 18th. If that story does not put your life, your problems, your pain in perspective, I don't know what would. To think that Lizzie chose all of that pain just to have one more day here on earth with her family, that she did her homework knowing full well that she would never be around to see her grade, that she chose life over and over and over and smiled the whole way through it even when it was a living hell. I always thought her motivation was that she thought she would be cured, but she knew that was not the case and she just kept going anyway. Just to have one more day. I am in awe of her now more than ever. Don't just read it - let it change your life. Let it drive you. Choose to have Lizzie's amazing decisions make you a better person.
--End Update--

Hi! New pics on the photo page! Thanks so much for stopping by and checking on Jake and our family. All is going well. The boys are busy with basketball and it has been such a fun season. They are both on teams with good coaches and great kids. Watching Jake out there makes me so nervous for that part of his head where there is no skull, but he certainly doesn't let it hold him back. He is a stealing machine! His running has been so good lately too. We haven't seen that duck walk for quite some time. Brandon is so into baseketball. He is a good shot and so much fun to watch. His nickname is "Hammer" - he got that on the soccer field first because he hammered whoever is in his way and it has carried over to basketball. The kid is built.

Halloween was a blast. Jake was an old time gangster, Brandon was a SWAT team guy and Ben was a football player. The school had a Monster Mash Dance and that was so fun. Jake and Brandon boogied all night long! It's so fun to watch them as neither of them have any qualms about gettin' down and having fun. On Halloween, Ben and I went to a couple of houses with the Hartnett triplets who were a lion, a tiger and a bear - oh my! Once Ben and I went home, Jake and Brandon hit the trick or treating big time with Dad. Then they came hom to drop Brandon off and Jake went for one more street. The kid lacks no enthusiasm for anything! I will work on gettin some pics posted today.

We went to Lizzie's funeral last Thursday. Jake decided to go with Steve and I and he did ok. He was very sad about losing Lizzie. The service was a beautiful tribute to her amazing life and spirit. She was such a wonderful kid. Please stop by her guestbook and leave her family a message (link above) - it really does feel so good to know people were touched by your story. Too many kids dying of this disease and when was the last time you saw an ad or a TV commercial for childhood cancer? You never do. Never do you see a celbrity or telethon or special event to raise money for fighting it and yet it kills more kids than AIDS, asthma, Diabetes, Cystic Fibrosis and Muscular Dystrophy COMBINED. With Lizzie and all the other kids out there that are fighting, in remission or are angels, it makes the work we are doing already to get ready for the childhood cancer walk here in Omaha in June even more important. Please let me know if you would like to help in planning the walk or if you know a business or group that would like to help sponsor the walk.

There is a fundraiser on Friday for a new foundation here in Omaha that helps families fighting cancer. It's called Angel Among Us and the fudraiser is this Friday at Millard Plaza Ballroom. It's a fashion show and auction. Jake is one of the models and he is modeling some skatboarding gear from Wake N Skate - he looks so cute, oh I mean, cool in his outfit! You can go to www.myangelsamongus.org for more info.

Yet another way to help these kids is to give blood regularly. It's always low and especially around the holidays. The need for blood or platelets never takes a holiday, so please go give!

We have scans coming up December 12th. This will mark 3 years for Jake's remission. We are so, so thankful for every healthy day. We will gladly take your prayers for good results! Please continue to keep Tanner in your prayers as she will begin radiation soon. Her birthday is November 12th, so please stop by her website (link above) and tell her Happy Birthday!

Make it a great day and love up those kiddos!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Sunday, October 29, 2006 9:41 AM CST

Update on Monday - Please keep Tanner and her family in your prayers too (link above) as Tanner has had some tumor regrowth and they are doing surgery tomorrow to remove that. You will do great, Tanner!!!

Our dear sweet friend, Lizzie Stratton, died today. Her link is above. Please go to her site and offer her family a kind word. Lizzie was one of the greatest people I have ever met. She was fun, friendly and had such an incredible spirit even when she was in the depths of her horrible battle with cancer. She fought for over 4 years - a hellish battle of pain and misery that Lizzie met with an unending smile and unfailing grace. We met Lizzie and her family on one of our first chemo stays on the 6th floor at Children's. She was out in the hall, making those cranes and making everyone smile. When we were still so wrought with pain and numbness from the newness of Jake's diagnosis, there was Lizzie, lighting our way. Her family there too, showing us that fun and humor is a staple of getting through the hardest of times. The rainbows on the side are in honor of her and how she lightened our family's "bit of earth" with her colorful spirit. She taught us all how to truly LIVEstrong and she will be forever missed by so many. Prayers for her family for strength and peace. Goodnight, Sweet Lizzie, goodnight....

Thursday, October 5, 2006 3:14 PM CDT

Hi! New pics on the photo page. All is going well here at the Beresh Household. We just got back from Buffalo, NY to see Chris Kelsay play for the Buffalo Bills. It was a great trip! Chris and his wife Natalie were such gracious hosts and we thank them so, so much for inviting us out there. What an experience for the boys and Steve and I too! We went to practice on Saturday and the boys got to run out on the field and huddle up with the team. Then Steve, Jake and Brandon got the grand tour from Chris of the locker room and practice facilities. They got to meet tons of players, the head coach and got tons of signatures. The game on Sunday was great too. The Bills won and Chris played a great game as usual, so it was a lot of fun. While we were up there, we also went to Niagra Falls and that was awesome. We took the boat ride right up to the falls, and Steve and the older boys took a tour where they walked down the side of the falls too. We also toured a naval museum in Buffalo and ventured over the border to Canada one evening. It was a great, relaxing trip.

Please keep Lizzie in your special prayers for relief of her pain and for her peace. I cannot say enough how wonderful this kid is. Please visit her site and sign her book and tell her Jake sent you. The notes in the guestbook mean so much, especially to families that are having a hard time. Sadly I could go on and on about people around us that are facing death of a loved one or a serious illness or injury. We have these people so close in our hearts and prayers.

Please go give blood - there is a huge shortage right now. If it weren't for blood donations, Jake and the rest of his friends could have never gotten a chance at a cure as they are faced with many blood transfusions throughout their treatment. Some kids have 2-5 transfusions a week just to get through it! Please make that appointment and go do it. It only takes about an hour and a half - make it something you do regularly every couple of months.

November 10th there is a great fundraiser for Angels Among Us - a new foundation supporting families facing childhood cancer. Go to www.myangelsamongus.org to find out more.

I will post some pics from our trip on here soon! Thanks for checking in on us. Love up those kiddos and make it a great day!

Kellie, Steve, Jake, Brandon and Benny :~)

Tuesday, September 19, 2006 5:40 PM CDT

Hello! All scans look good! 2 years and 9 months of remission. This was scan number 11 out of 18 and it feels good to have one more under our belt. We have such a love-hate relationship with scans - we hate going and having to go through it, but we like hearing in the end that everything is ok. I went into the MRI with Jake this time - my first time in over 3 years! I stopped going in with Jake when I got preganant with Ben and hadn't been back since. I just felt like I needed to do it today, and really, Steve can have the job back. Sitting there in that MRI with Jake brought back some hard feelings for me and a couple of times I felt a little panicky. Flashbacks, I guess, and wanting so bad for Jake to never have to go through all that crap that treatment involves again. I had recently read a story of a boy relapsing at his 2 year 9 month scan, and that and of these kids not doing well around us just made me really want these done and behind us. Anyway, it's over and all is ok. His blood work looked good too, and Dr. A even talked a little of future options with improving Jake's hairdo with a plastic surgeon. That made us feel good - why would the doc talk about something like that if she didn't think Jake would be around well into the future to worry about something as silly as hair! December will bring the scans around again, and we will do an echo then too to check on his heart. That will mark 3 years! So thankful for everyday!

All else is going well. We actually have the basement DONE! Almost a 2 year project that Steve has worked so hard on is finally finished! We had a little celebration down there on Saturday for the Nebraska game and for Steve's big 37th birthday. Nothing better than celebrating such a great dad and husband! Jake's flag football team that Steve coaches won their game on Sunday, but only after 4 overtimes! Jake was pretty tired after the game, but he played great! Brandon had soccer last night and did great too - he is such a hustler out there! Ben is doing great and cracking us all up most of the time.

As most of you know, we along with the Larson family, have decided to close our foundation, In The Arms of Friends, at the end of the year. It was a hard decision, but we just want to spend more time with the boys we fought so hard for and the foundation really compromises that. Liz and I decided to co-chair the 2nd Milestones Walk for Childhood Cancer here in Omaha this year, and we are really excited about seeing that wonderful event continue. It will be in June, and we hope to raise a lot of money again for childhood cancer reasearch. So I am just enjoying being a stay at home mom - no business, no foundation - just loving being a mom to these incredible boys! There is a new foundation called "Angels Among Us" that recently formed to help with the financial difficulties of families facing childhood cancer. They are having a big fundraiser November 10th. You can go to www.myangelsamongus.org to find out more! It will be a great night of fashion and fun! Check it out!

We having big plans this fall to enjoy this weather!!!! We are also going to Buffalo, NY soon to see our friend and NFL player, Chris Kelsay, play in a Bills game. We will get to see the fall display up there and Niagra Falls too! More Husker games, fun tailgates, trips to the lake, soccer and flag football....all the good stuff.

Please keep all the kiddos fighting and in remission in your prayers. Say special prayers for the families that have lost their children - I cannot imagine the emptiness and pain. One very special family going through just that is the Thomas's. Christi Thomas is an amazing kid who did so much for neuroblastoma and childhood cancer research - a true warrior earning her angle wings. See her story at www.christithomas.com. Of course please keep Lizzie (link above) and her family in your special prayers too! You are one awesome girl, Lizzie!

Thanks for the prayers for Jake's scans and for checking in on our family. Please go give blood. Make it a great day and love up those kiddos!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Wednesday, September 6, 2006 10:43 AM CDT

Goodmorning! New photos on the photo page. All is well here and we had a great Labor Day weekend! We spent the whole day outside on the lake and it was such a beautiful day. Can't beat this fall like weather! It is so green here too because we have had so much rain and the sunflowers are blooming everywhere - I could go on and on - I just love it!

Jake and Brandon are settled into school and really like their teachers. Benny is doing great. He is talking so much more, and he is just so darn fun and cute. The boys are so good with him and he wants to do everything they do. Soccer and football are going great. Steve is coaching Jake's flag football team again this year and they have such a good group of kids. Brandon has been playing goalie some this year in soccer, and he really loves the team he plays for.

We thank God so much for Jake's remission everyday, and we try so hard not to let the fear of it's ending take over our days. Some days and weeks,it's better than others and sometimes not so much. So many of our friends are not doing well right now, and we have had some hard days of sadness for them that also ignites our own fears even more. I guess it is true to the name of PBS's documentary, "A Lion in the House". I never did watch that documentary - but it is so true that that is what it is like - living with a Lion in the House. You hate that it's there and sometimes it is calm and tame, but there is no telling when it will roar back again or what it will do next. Anyway, I have stayed away from journalling the last couple of weeks because I was so sad for the kids that are having a hard time and then that leads to my fears for Jake taking over. But now, we are feeling pretty good about Jake's situation. Thank God for girlfriends that have been my sounding board for these fears for so long. I hope you gals never tire of having to tell me not to worry; that Jake is fine. Usually either Steve or I are telling the other not to worry, but it's hard on those times when we are both dealing with a big dose of dissappointing news about kids that we love. When it comes right down to it, though, Jake is feeling good and doing great and that helps us tell that damn Lion to "Keep it in the cage, Baby!" Jake is coming up on his next set of scans which are this month on the 19th. It will mark 2 years and 9 months of his remission - but whose counting - ha - US!

So now on to our friends that are fighting so hard - Tanner(link above) - what can I say about this kid - she is amazing! They removed her tumor along with her auditory and facial nerves on her right side and she is recovering and doing great. They will move on to her next phase of treatment soon and she is dealing wonderfully with all the changes that have come with that surgery. Then there is Miss Lizzie(link above)- another amazing, amazing girl. She is going to school and despite what cancer has taken away, she is living STRONG! Please also keep ryan (ne/ryan) in your prayers as he continues his fight - another kid with an incredible and fun attitude. I have been so sad about this next child - talk about a family and a child who has gone through so much to win this fight. Christi Thomas is a girl that we met through the internet through another child who had Jake's same cancer. For 4 years she has fought so, so hard and done so many experimental, phase 1 trials. She is a genius and so creative and all of that does not matter to this disease. She is in so much excruciating pain right now and it's heartbreaking- www.christithomas.com is where you can find her story - click on her blogspot to get her latest updates.

Even though I only write about the kids who need prayers, there are kids out there doing so great and that have been in remission for so long. Sometimes I have to sit and write down their names to remind myself. So for all of these kids and for all the angels, make it a great day! If there are any kids in your life - your grandkids, nephews, nieces, neighbors - love them up, spend time with them and soak up their appreciation for all the little fun things that happen everyday. Please also - go give blood. Only 5 percent of the population that can give blood actually does. That's a pretty sad statistic considering all of the people's lives it saves. Go change the statistic and give!

I will update with Jake's scan results as soon as we get them! Thanks so much for stopping by and checking in on Jake. It means so much!

Love,
Kellie, Steve, Jake, Brandon and Benny :~)

Tuesday, September 5, 2006 11:04 PM CDT

Hello! Thanks for stopping in to check on us. I will update more tomorrow, but I just added new photos on the webpage.

Got to go help Steve in the basement - that two year project of ours is almost done!!!!

Kellie :~)

Monday, August 14, 2006 5:42 PM CDT

Hello! All is good here. Jake and Brandon started school today, and they both had great days! Jake seemed to think 4th grade was pretty cool and Brandon thought the same of second. Brandon has started soccer practice and Jake flag football with Steve as his head coach. Benny seemed to miss them today, but was kept busy with having his friend Emmy over here this morning. Benny is officially potty trained and made that whole process pretty easy on his mama - thank goodness!

The Shining Stars event at Village Pointe was so fun and Jake did great in the fashion show. He and Josh and Josh's brother Tanner looked like old pros up there. The whole event was so fun - if you didn't make it this year, please come next year - the kids will love it! I hope it raised a lot of money for Children's Hospital!

Please keep our sweet friends in your prayers: Lizzie for her miracle (link above); Ryan (ne/ryan)and Abby (visit/abbybridgewater)as they continue their fight, Joey (visit/joeythompson) in his stem cell transplant, Cameron with questionable scans (link below). Prayers too for Tanner (link above). They found a new spot in her brain during her latest scans. Please pray for decisions to be made soon regarding her treatment and strength for her family as they wait. Congrats to Hannah (visit/hannahknudsen)for reaching the end of her treatment!!!! Way to go, Hannah! Please keep up your prayers for Josh's brother, Justin who is recovering from surgery he had last week. As always prayers for the kiddos in remission to stay there and for the families that have angel children.

Please, in honor of these kids and all of the cancer fighters out there, go give blood! There is no better gift to a fellow human being fighting hard for their tomorrow's! It's an hour and a half and one simple poke out of your life every couple of months that ensures the lives of many. The simplicity of the whole thing is pretty remarkable. Just doing that one easy thing can give people life! Think about it and then go give blood. You and many others will be glad you did!

I want to take a minute to thank all of you for following our son's story for the past three years. I know I am always so honored and appreciative when people we don't even know tell us they follow Jake's site. It's wonderful to hear our friends say too that they read Jake's site. You'd think all of you would be tired of us by now! I cannot express how much it means to us that there are so many that care enough to read and root for us. Jake's remission is a very special gift that we are ever so grateful for. As I tell the boys, life is hard and there are no promises, we just have to soak up the good days and really live each moment in them. Katie Couric said in an interview I just read that in the times of her life that she has suffered (she lost both her husband and sister to cancer) she was "inside this box of fear." She goes on to say, "You walk on the street, and you don't think anyone else has problems or suffering. You realize afterward that every one of them does. And not to be in that place every day, it's a gift." Well said. I guess that's why she makes the big bucks!

Make it a good day and love up those kiddos!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Friday, July 28, 2006 10:10 PM CDT

Hello! Thanks for stopping by and checking in on us. We are all home now and on a mission to enjoy the last two weeks of summer. School starts on the 14th and I'm just not ready! I want these boys home with me longer! But alas, an education they must get!

Jake had a great time at Camp CoHoLo - even danced with some girls I heard! Thanks so much to the wonderful volunteers that make Camp CoHoLo so special for these kids. Jake loves everything about it!

We traveled up to Wisconsin for a couple days of waterpark fun with our friends the Gilberts from Cedar Rapids. We had a great time and it's always great hanging out with great friends!

There is a fundraiser for Children's Hospital coming up at Village Pointe on August 10th from 5-9pm. It's called "Shining Stars" and Jake will be a model in the fashion show and is featured on the posters that are promoting the event. It will be a great event for the whole family with a street fair with entertainment for the kids, face painting and a magic show. There is also a fall fashion show, silent auction and food sampling. You can go to Children's website www.chsomaha.org or call 955-6851 for tickets. There is nothing more valuable than the good health of a community's children and the hospital devoted to making that happen. Come to this event and help support Children's Hospital of Omaha - it is a very special place we will be eternally grateful for forever!

Please keep Lizzie (link above) in your prayers as we all continue to pray for her miracle. Please have Ryan (ne/ryan) and Cameron (link below)in your prayers also. Cameron had a questionable MRI a couple of weeks ago and goes in for a follow up one on the 16th - we have huge faith that he is indeed still in remission! Prayers too for Josh Larson's 17 year old brother, Justin, who was in a car accident last week. He is ok, but has a broken leg, ankle and heel among other injuries and is in for a long recovery.

Thanks again for checking in on us! In honor of all the kids and adults fighting this epidemic called cancer, make it a great day! Love up your kiddos and please, please go give blood!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Sunday, July 16, 2006 9:17 PM CDT

Hello! Jake returned from Seattle and he had such a great time. Thanks to Chris Kelsay for making sure the kids got there and back safely. We really appreciate you showing such kindness to Jake and being such a big bud to him. Thanks to the Grant Wistrom Foundation and to Grant and all the other players that gave of their time to make the trip possible. Jake had a wonderful time - they went to a Mariners game, toured Seattle, went on the Space Needle, went out to some great places and were treated like royalty. What a fantastic program!

Jake got home Wed night. Now it's Sunday and he is gone again. We dropped him off at Camp CoHoLo (Nebraska's Cancer Kids Camp) this morning. He was a little reluctant to go just because he hasn't been home that long, but I'm sure he's having a great time and has long forgotten about it by now. It will be a hot one out there at camp with our 100 degree temps for the next couple of days, but with all the docs, nurses and trained staff out there, I think he's pretty safe. We pick him up on Wed morning. This is Jake's 4th year of camp! He went the first time when he was 6 and right in the middle of treatment. We watched the slide show from his first year and he was one sick little boy in those pictures. Totally different kid now - thank God!

Brandon has a soccer camp this week and some special plans of his own. The Grandpa's have done a good job of making sure Brandon has been busy while Jake has been gone on these trips. Lots of visits to the Pizza Machine! Ben is doing great and really talking so much more. After dropping Jake off at camp today, we were about 3/4ths of the way home and Ben got a worried look on his face as he searched around the car saying, "Where Jakie go?" He was probably thinking, "I hope they don't drop me off somewhere too!"

Please keep Lizzie (link above)in your prayers. I don't know if I have ever met a more wonderful person. She ranks right up there, and even now with as broken as her body is, she continues to give all of us that know her so much. What an incredible blessing she is. Please pray for her strength and that of her family's and always....her miracle. Please love up your kiddos and enjoy everday in Lizzie's honor. Giving blood in tribute to her and the many kids fighting would be awesome too!

Thanks for checking in on us!
Kellie, Steve, Jake, Brandon and Benny Boozle :~)

Saturday, July 8, 2006 5:11 PM CDT

Hi! Thanks for checking in on us! We are all doing great! The photo above is from this morning when we sent Jake off to Seattle for the Grant Wistrom Foundation's Circle of Friends Reunion Trip. Remember when he went to Wisconsin this past February with this group? Well every 2 years they have a reunion trip. Our oncology nurse, Anisa, could not escort the kids this time because she is getting ready for Camp CoHoLo, so Chris Kelsey (former Husker and now Buffolo Bill) flew in from Buffalo, NY last night to meet up with Jake, Kim, Lauren and Dylan to take them to Seattle. He along with Grant Wistrom, Jared Tomich and other former and current NFL football players will act as counselors during the trip. They have big plans including watching a Mariners game from a private suite, going to the Space Needle, a tour of Seattle, time at a Lake, a dance, a night at the Improv, tons of food and snacks and video games and swimming and lots of fun with other cancer kids from around the country. It will be so fun for Jake, but we are missing him already. Brandon had lots of tears last night, so we are trying hard to keep him busy. Jake gets home on Wed and then leaves on Sunday for Camp CoHoLo (Nebraska's cancer camp), which of course he is totally psyched for too! He is a busy boy this month! Thanks so much to Chris for taking such good care of the kids on their trip up there and through the whole thing. Notice Chris's shirt in the picture above?

There are new pics on the photo page from the 4th. How much do the Beresh's love this holiday? So much that Steve, Jake and Brandon decided this year the 4th is waaaayyyyyyy better than even Christmas! We had a great time watching all of Steve's obnoxious fireworks show. With the boys getting older they are allowed to light some things off now and they think that is so cool. Thanks to Gary and my Dad for your additions to the show too! It was such beautiful weather - so mild and cool. On the night of the 4th, I had to wear a jacket it was so cool - I can honestly say I have never done that before!

Brandon and Ben are great. Ben is talking a lot more and has been trying his hand at using the toilet here and there. Brandon has a soccer camp coming up and he and Jake just finished swim lessons. We have been going to the park a lot and hitting the sites of Omaha. We took in a game at the College World series a couple of weeks ago and that is always a blast!

Please keep Lizzie (link above)in your prayers as she makes wonderful memories with her family - such a great girl she is! Please pray for her miracle. Keep Ryan (ne/ryan) and Cameron (link below)in your prayers also. For all the kids fighting - I could list name after name just here in Omaha. Tanner's family got moved to North Carolina. We are happy for them to be settling in to their new home state, but will miss them. Her website is down temporarily with the move. She is doing great, though!

Please go give blood - the supply is critically low!

Thanks for checking in on us!
Love, Kellie, Steve, Jake, Brandon and Benny Boozle :~)

Thursday, June 22, 2006 3:00 PM CDT

All of Jake's scans look good is what we have heard so far! So glad to have another one under our belt. We really handled this one pretty well - only a little anxious today and not too much this whole week leading up to it. This scan marks 2 and a half years since Jake's treatment ended! We will do it again in September. He feels so, so good and there was really not even one thing to talk to the doc about with him as he is having such a great summer. His nose hasn't even been running for once! We are so thankful for the health of our family!

Texas was great and there are new pics up from our trip. We had so much fun with our family down there. We hung out at my cousin's ranch and we were on their 4 wheelers constantly. The boys were in heaven on those things, exploring the land, seeing all the wildlife and looking for bones. They got to shoot pellet guns too - such a grat boy hang out for sure! We also went down to San Antonio for a couple of days and hung out at their beautiful riverwalk and visited the Alamo. The boys loved the Alamo. Jake especially is such a huge history buff that the Alamo was a big hit! Then we moved on to Austin for the wedding festivities. We spent a day at the Univ of Texas and toured their football stadium, explored the campus and bumped into the LBJ Library, which was pretty neat. The best part of course was spending time with our family down there. Thanks so much Diana, Gary and Haley for your great hospitality at your ranch! We loved it!

Ben has loved being home. Many times while we were gone he'd plead "Go car. Go home!" He traveled well and had a good time, but he was one happy boy to be home. The boys helped with the Grant Wistrom Foundation Golf Tournament last weekend and had a great time at that. Jake's baseball is winding down and he is taking golf lessons. They are both in swimming lessons now and Brandon has a soccer camp coming up in July. July is a busy travel month for Jake as he is going on the Grant Wistrom Foundations Circle of Friends trip to Seattle with 3 other cancer survivors from Nebraska. Then he will come home from that and get ready for Camp CoHoLo. He is pretty pumped about both of those. I am trying to soak up each day having all the boys home. I hate that it's going so fast as we have had so much fun already!

Please keep the children of cancer in your prayers. There is Lizzie (link above) and Ryan (ne/ryan) and so many others. I did want to tell you too that recording artist Jolie Edwards who is so very talented wrote and recorded a special song for Lizzie that is available on the In The Arms of Friends website. Lizzie and her family generously offered all proceeds from the sale of the song to go to In The Arms of Friends. There is a link above to In The Arms of Friends website (www.inthearmsoffriends.org) where you can get your own copy of the CD and help out the many kids that are fighting cancer here in Omaha.

Thanks so much for checking on us and hope you all have a wonderful 4th of July! Love up those kiddos and please go give blood! Thanks too for the prayers for Jake's scans!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Tuesday, June 6, 2006 9:43 AM CDT

Hey, Everyone! Just a quick note. The walk was awesome!!!! The In The Arms of Friends Board Members did a great job getting the whole thing organized and everything went well! We had about 1000 people there and raised around $50,000 for Childhood Cancer Research
($ goes to the CureSearch Foundation)! Our team - Team G.I. Jake - was the top fundraiser!!!! We raised about $6000! Thank you so, so much to everyone that donated to our team and to our great team members that worked so, so hard at raising funds for this great cause. It was great having you all there that day and a part of our team. It means so much to have the generous support of our friends and family! Thanks too to all the awesome volunteers that helped so much - we couldn't do it without you! Thank you, thank you!!!!!!! I will post pics of the walk here soon!

The boys are doing great and we are enjoying our summer. We have a trip to TX planned soon for my cousin's wedding. Congratulations to Amy and Clint on your pending nuptuals! I also have to say congrats to Haley on her high school graduation, to Josh for graduating from Med School and to Erika for her Physical Therapy School graduation! We are so excited to come down and help you all celebrate!

Jake has scans set for June 22nd. Please keep us in your prayers. Please keep Lizzie (link above) and Ryan in your prayers also (ne/ryan). It was so great to meet you, Ryan and Family, at the walk! June 21st and 22nd there is a show on PBS called "A Lion in the House." It is a documentary about 5 or6 families who have children with cancer and their journey through it over a 6 year period. It's on PBS - check local listings.

Thanks for checking on us and thanks again for making the Childhood Cancer Research Walk such a success!
Please go give blood!

Love, Kellie, Steve, Jake, Brandon and Benny Boo :~)

Tuesday, May 30, 2006 4:10 PM CDT

Hey, Everyone! All is well here and we have all enjoyed our first day of summer vacation!!! We had a busy weekend and the boys got a lot of sprinkler time out in the back yard with this hot weather. Jake and I were on the news on Monday talking up the walk that is coming this Saturday, June 3rd! We are expecting a large crowd and we are so excited to get everyone together for this walk and raise some major bucks for Childhood Cancer Research. You can still donate to Jake's team - Team G.I. Jake Jake LOVES watching that total go up and up! We are over halfway on our goal to raise $3000. Thank you so, so much to all of you that have donated so far. The money will be put to good use to helping kids beat cancer.

Jake and Brandon will be on TV again this Saturday at 1:30, doing the dream makers board on the Children's Miracle Network Telethon. Jake has wanted to do this part of the telethon since he was first involved 3 years ago when he was on treatment. He and Brandon are pretty pumped. Busy day that day with the walk, the telthon, Jake having a baseball game that evening and then a little going away party for the Lusks here that night. Yes, Tanner and her family are moving. They are moving to North Carolina to be closer to family. It has been great having their friendship so close for this time, and we are so thankful they are leaving Nebraska with Tanner healthy and doing great!

Skylar Berry's (ne/skylar) services were this past week and it was a beautiful service. He was such a great kid. I hate having to go to funeral after funeral of kids taken by this disease. It's too many. One is too many. Please keep prayers for sweet Lizzie Stratton who is going through a hard time and in a lot of pain right now (link above). She is such an incredible girl. I know her and her family would love to have guestbook messages of support right now.

The boys are doing great and we are so looking forward to a great summer. Steve and I are just so thankful for these three great boys that God put us in charge of. At every stage they are all in, they are just so fun for their own reasons. Our prayers and thoughts are always with the parents that have had to say goodbye to their children.

I will update with details on the walk and how it went. Online alone, the walk has raised over $10,000! How cool! We can't wait to see the grand total come Saturday!

Please go give blood - there is a constant need. Thanks for checking in on us!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Wednesday, May 10, 2006 11:56 AM CDT

Update on Monday, May 22nd - Skylar Berry (ne/skylarberry)passed away this morning. He doesn't have to fight anymore. Gone is the pain and the suffering. He is a special angel with a wonderful family that will miss him so. Goodnight, Sweet Skylar, Goodnight.

Goodmorning! All is good here at the Beresh House. There are new pics on the photo page. Thanks, Jeff!

We have been keeping busy with house, school, baseball, soccer and enjoying the great spring weather. Brandon's last soccer game is Thursday and Jake's baseball is just gearing up. Ben is doing great. Saying a lot of words now including every 2 year olds' favorites, "Mine!" and "No!" He turns 2 on Friday!!! Happy birthday to my sweet little Benny!

We are getting ready for the Walk For CureSearch on June 3rd. Our online donations so far are at $470! Our team, Team G.I. Jake, has a goal to raise $3000. $1000 for every year that Jake has had cancer in his life. Jake is so into it and he loved the t-shirts we have designed for the team. Both he and Brandon LOVE to go online and check to see where the total for our team is at and if anyone has donated. The Omaha Police Union donated and he was so excited to read the note with that one! If you want to make his day and help raise money for childhood cancer research in the process, then donate online by going to Donate to Team GI Jake Now . You can also send us a check made out to CureSearch to the address below. All money goes directly to CureSearch which is the leading pediatric cancer research foundation. Too many kiddos suffer and die to this disease, and we need all the help we can get to change that. It's scary because I read in the New York Times last year that no new chemotherapy drugs have been designed specifically for childhood cancer in 20 years! I guess there is so little money specifically for children's cancers that they just try stuff originally made for adult cancers on the kids. Your donation will help, and it really would make Jake and Brandon flip with excitement!

Please keep Skylar's family in your prayers as he earns his angel wings (ne/skylarberry). It breaks my heart to hear of this sweet kid who was so full of energy and smiles so broken now. Prayers too for Ryan (ne/ryan), Lizzie (link above) and all the other kiddos on treatment and fighting so hard. We did get great news this week that both Tanner and Josh's scans were clear!!! Their stories give so much happiness, hope and inspiration.

Not much else to tell thankfully! Please go give blood or platlets. I read on one child's website who was needing platlets that he had to wait a day for them because Norfolk was the only city in Nebraska that had any of the type he needed available! Thank God it wasn't an emergency situation! It only takes a small portion of your day to go give, so please do.

Happy Mother's Day to all the moms out there!

Love, Kellie, Steve, Jake, Brandon and Benny Boo :~)

Friday, April 28, 2006 9:11 AM CDT

Update on Saturday Afternoon - Jake was coughing like crazy at school yesterday again and I had to go up there to give him some meds. Don't know if they really helped as he coughed most of the night. I took him to Dr. Harrison (pediatrician) this morning and he thinks it's a sinus infection, so now he's taking antibiodics and some cough stuff so he can sleep at night. He is feeling good and is so into the draft - he loves the NFL and all the wheeling and dealing! Thanks for checking in!
End Update.

Goodmorning! Of course I get on here to update and the sound of the keys brings Benny around the corner and begging to get in my lap like Pavlov's Dogs. So here's my attempt at updating with the little buddy on my lap...

Jake is over Monday's stomach flu, but now is fighting a cold or sinus infection. It's hard to tell as his nose runs all the time. He had to come home from school yesterday as he was coughing continuously and the inhaler didn't help. He said his teacher told him to get a drink "30 times!" He is better this morning. Radiation did a number on the sinuses in his head, so it is difficult for him to deal with the drainage. Ben has a cold, so not sure if that's what Jake has or if an infection is brewing in those sinuses. We will see what happens in a couple of days. Before we left for school this morning I noticed that Jake had blood on his face. That skin behind his ear that was burned from radiation is so dry and a crack opened up and was bleeding. I put a little neosporin on it and off we went to school. It is "beach day" today at school, so both boys were excited to wear their suits and hawaiian shirts. Jake is playing baseball and is geared up for his games to start. Brandon is doing great. He had a soccer game last night and scored a goal. Ben is getting over his cold and is tearing apart my office right now in protest of my typing. He is talking a lot more and just loves being outside. We have all been out there a lot and have big plans to shape up and landscap the back yard this summer.

Our team for the Walk for CureSearch put on by In The Arms of Friends is in shape now to raise money for Childhood Cancer Research! Childhood Cancer is one of the least funded childhood diseases and yet it kills more kids than AIDS, asthma, Cystic Fibrosis, Diabetes and Mustcular Dystrophy COMBINED! There are no telethons for childhood cancer; there are no big stars raising money for it. It's so frustrating and sad as a parent to try and understand why not??? 46 kids are diagnosed with cancer every school day and that number is rising! A quarter of them will die. We need your help in putting cash where it is needed most in regard to erradicating the number one disease killer in kids! Our team's name is "G.I. Jake" and we are walking in honor of Jake and his battle that he continues to wage. We are honoring him for his fight for life while he was on treatment, and now for his fight to stay in remission and deal with the ongoing side effects from treatment. All money will go directly to CureSearch which is the leading childhood cancer research foundation in the country. You can send a donation to our address below or you can donate online by going to Donate to Team GI Jake Now . All checks can be made out to CureSearch. If you would like to join our team, please let me know. We are getting t-shirts made and it will be a fun morning for the whole family. It is June 3rd from 8-10am at Village Pointe Shopping Center in Omaha off of 168th and Dodge. Children's Hospital has joined us a major sponsor along with MPI, Connectivity and Coach Callahan's Foundation. Thank you so much for your support. Our goal for our team is to raise $3000 - $1000 for every year that Jake has been dealing with cancer. Jake wants me to tell you "thanks for helping kids like me!"

Please keep the many friends of ours dealing with this disease in your prayers. Those that are still fighting, those that are in Hospice, those that are in heaven and those kids that are in remission that they stay there forever!

Thank you for checking in on us. Looks like the baseball and soccer games scheduled for this weekend will be rained out, but that is ok because we need this rain! Have a wonderful weekend! There is a blood drive this weekend at Reeder Elementary off of 192nd and Harrison from 9-1. Please come and give blood! Love up those kiddos!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Tuesday, April 18, 2006 1:07 PM CDT

Update: Monday, the 24th. This is Jake. I'm home sick with the stomach flu and I have nothing to do. Thought I would get on here and change the background so my site can look cooler. Go Big Red!

Hello! New photos are up on the photo page. All is well here and we had a great Easter. Lots of egg hunts, a big silly string fight in our backyard and tons of candy now to show for it! Spring Break was so much fun and it was so good having the boys home. A good teaser for the great summer we will have! All the boys are doing great! Jake is feeling good and has little complaints. He does have just a continual stuffed up nose. I'm sure it's from all the radiation and surgery damage to his sinuses in his skull, which will only get worse over time. The mornings are the worst, but once he gets all of it blown out before school, the rest of the day doesn't seem too bad. He has started baseball practice and is excited for his first game coming up at the end of the month. Steve is assistant coaching his team, so Jake loves that. Brandon is doing great also. He is playing soccer right now and loving this warm weather so he can wear shorts! He loves to wear shorts! Ben is still such a hurricane - into everything and full of energy. He has started with a speech therapist from the schools to work on his lack of vocabulary. What a huge improvement we have seen from just a couple of sessions! He is a lot happier boy now that he can communicate a little more. The boys have taught him to lick his finger and put it on his rear and go "psssssss, hot!" Oh the lovely influence of big brothers! I gave all the boys buzz cuts for the summer. Jake begs and begs me not to cut his hair as he wants to grow it long over the side of his head where there isn't any. Everytime I have to tell him that is not going to happen. There is no way to cover it up and it would be better just to always wear it short like a marine as it looks so cute that way. Plus marines are cool! Sometimes the stares or the comments wear on him, but overall he handles it just fine. A funny thing happened about a month ago when we were in the urgent care for Jake's strep throat. This kid about Jake's age comes out from seeing the doctor and his lip is all torn up, nasty looking and full of stitches from an accident. He walks right over to Jake and says in a muffled voice from his swollen lip, "What happened to your hair?!" Jake just looks at him and says, "Well I had cancer, but what in the world happened to your lip?" It was just so funny that this kid who looked like he had just had his lip in a meat grinder thought Jake was the one that looked funny! His dad and I just looked at each other and laughed.

The inaugural Walk for CureSearchis on June 3rd here in Omaha at Village Pointe from 8-10am that will benefit Childhood Cancer Research. We are forming Jake's team, The G.I. Jakes, now. Steve's brother's girlfriend, Amy Groff, came up with the name and it couldn't be more prefect! If you would like to be on our team, just let me know by e-mailing me. We are having t-shirts made and I will send you info soon. If you would like to form your own team or just walk on your own, you can go to www.inthearmsoffriends.org (link above too) to register. This is the first walk in this area specific to raising money for pediatric cancer research. 46 children get diagnosed with cancer a day in the US and that number is growing. More kids die from chidhood cancers than AIDS, asthma, Diabetes, and Cystic Fibrosis COMBINED! And yet, Childhood Cancer reasearch is one of the least funded, so please join us so more kids can live. It will be so much fun! If you would like to volunteer that day to help, please let me know of that too. You can go to www.curesearch.org to learn more about where the money we raise will be going to.

Prayers for all of our friends that are still fighting or are on Hospice. There is Lizzie (link above), Ryan (ne/ryan) and Christi (www.christithomas.com) and a whole host of kiddos on treatment that could use your prayers. Special thoughts and prayers for Skylar as he is on Hospice - such a great 5 year old kid - please visit them and leave a message (ne/skylarberry). Of course there are the parents and families that have lost their children like the Brions (ne/brooke), Matthis (ne/haleygirl), Hamiltons (link above) and Jones(link above) that need your prayers. Lastly prayers for all the kiddos, including Jake, who are in remission. Prayers that they stay there forever, and the side effects they have to deal with never become life-threatening.

Please go give blood - unfortunately they are ALWAYS running short of blood and platlets and the need is never-ending. Love up those kiddos and thanks for stopping in to check on us!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Saturday, April 1, 2006 2:16 PM CST

Hello! The background and green writing is, as always, in memory of sweet Benjamin Jones (link above). There are new photos on the photo page. All is good here. Jake and Brandon had a very special visitor today. Chris Kelsay, who plays for the Buffalo Bills and was a Nebraska Cornhusker, was in town with his family and they stopped by to see the boys and take them to lunch! They went to Red Robin and Jake says, "we didn't just have a good time, we had a GREAT time!" Jake met Chris at the Circle of Friends camp he went to in Wisconsin in February (this was the camp for cancer kids that Grant Wistrom puts on with Jerry Wunsch along with other NFL football players). It was so nice of Chris, his wife Natalie and their new baby daughter, Harper to take time out of their trip to come and see Jake and Brandon. Thank you guys so much. They boys loved it and can't stop talking about it!

We are all good now, but we had a run of two weeks of illness after illness. First Jake got the chicken pox, then he got strep throat, then Steve got the stomach flu, then Brandon got the chicken pox, then I got the stomach flu, then Jake got the stomach flu and then Brandon got the stomach flu! Somehow, Ben has avoided it altogether and I hope our luck holds out with that! Jake really had a hard time getting over the stomach flu and he was so, so sick from it. He finally got back to school on Thursday. I think his gut is so fried from meds and chemo that it just took him longer to recover from the flu. But he is great now and this warm weather enabled us to open the windows this week, so hopefully we aired out all those bad bugs.

Plans continue for our Walk for CureSearch on June 3rd here in Omaha at Village Pointe from 8-10am that will benefit Childhood Cancer Research. We are forming Jake's team now. If you would like to be on our team, just let me know by e-mailing me. If you would like to form your own team or just walk on your own, you can go to www.inthearmsoffriends.org (link above too) to register. Childhood Cancer reasearch is extremely underfunded, so please join us so more kids can live. It will be so much fun!

We have so many friends that need prayers. Prayers for Lizzie (link above) and Ryan (ne/ryan) as they fight, fight, fight. And special prayers for Skylar as he is in Hospice and has been having lots of pain (ne/skylar). It breaks my heart to go through the rounds of kids we have come to know and love on these sites and from the clinic at Children's. There are so many victories, but just too many sweet little kids becoming angels too.

I have to tell you about two little girls who are in the midst of their battles with cancer, but still found the energy to raise major bucks for our foundation, In The Arms of Friends. First is Abby with Luekemia who is making "Chemo Fairies" and has raised over $4300 for In The Arms of Friends. For a $5 donation, she will send you one of her homemade fairies that are so adorable. You can go to www.caringbridge.org/visit/abbybridgewater to order your fairy. You can also check out her story on www.ketv.com under "Julie's Diary" from a newstory done on her this past week. Then there is Hanna with Ewing's Sarcoma that had a fundraiser in the Elkhorn Public Schools and her school in particular, Hillrise Elementary. They raised over $3200 for In The Arms of Friends by having a "Hats on for Hannah Day". You can go to www.caringbridge.org/visit/hannahknudsen to see pictures of me accepting that BIG check from Hannah's classmates! Thank you so, so much, Girls, for your amazing generosity!!!!

Please do something easy for these kids and adults fighting too and go give blood. Some kids have 5-10 transfusions of blood and platlets a week just to get to their next round of chemo! The need is neverending - make sure your giving is too.

We have spring break this coming week and I am so excited to have the boys home! No plans for travel. Just going to enjoy these spring days, play games, see the sights of Omaha and tickle and chase Ben a lot!

Have a great day and thanks so much for checking in and continuing your prayers for our family!

Love, Kellie, Steve, Jake, Brandon and Benny Boozle :~)

Friday, March 17, 2006 1:15 PM CST

Update Monday 4:25 - All Jake's scans look good. It was a good day in clinic, Jake did great with the IV and we even got to see a lot of our favorites from the 6th floor. Now we are just going to hunker down and wait for this big snow tonight - we are so hoping it really happens! Thanks for the prayers! Go give blood and have a good week! Kellie :~)

Happy St. Patrick's Day! I had to copy off of our friend Lizzie and put the green background on here. New pics are up on the photo page. You'll notice that a couple are taken in the dirt pile out in our backyard. That dirt pile means a lot to the three little boys that live in this house. It was a pile made when we dug out under our deck to put a patio down there. It quickly became the boys' main place to play. They love to dig in there, plant tulips (which we did this fall-we will see if any come up or if they have all been dug up by the boys), play with their trucks and army guys and make mud. No matter how old the boy, they are out there playing. I had to take a pic the other night when all three were out there together. Then the last pic is just a glimpse into Jake's mind and personality. He thinks so big picture and just gets the social nuances of everything around him. It really is amazing how tuned into the world and relationships he is. He LOVES to watch the news. So when he had the chicken pox, he was outside and had taken some of his GI Joe guys out there. Then he burries one of the guys and pounds together a couple of pieces of wood to make the cross. Then he is out there standing by the pile singing "America the Beautiful" and saluting. I go out and ask what he is doing and he is as serious as can be when he said, "I'm having a funeral for all the dead sodiers that have died for my freedom, Mom. The one I burried is only a toy, but he is supposed to represent the real guys." I couldn't pass up a picture of that one. One complex little head he has.

The boys are off of school today as it's inservice day for teachers. Brandon is at a friend's house and Jake had his friend, Kevin, spend the night here. They all were at the Creighton Basketball game last night rooting on the Blue Jays (who won!). Jake was back at school on Monday and most of the scabs from the pox are gone. Everyone here is feeling great. We go for Jake's scans on Monday afternoon. We are supposed to get some major snow (finally!) Sun-Tuesday, but we know Dad will get us there and get us home just fine. We are all excited about the big snowstorm - I hope it materializes. Please keep Jake in your prayers for Monday. I will post when we get home that night.

Please have Skylar in your special prayers as he is entering Hospice and has been in a lot of pain (ne/skylarberry). Such a sweet, happy kid that I hate even imagining being in pain. Please also keep Lizzie (link above), Ryan (ne/ryan) and Hannah (visit, hannahknudsend) in your prayers also. I can't even begin to list just the kids just here in Nebraska that need prayers unfortunately - there are too many and it's sickening to watch them have to suffer and fight so. Please visit Abby's site (visit/abbybridgewater) as she is having amazing success with her "Fairies for Friends" fundraiser she is having for the In The Arms of Friends. For a $5 donation she will make you a fairy and send it to you. In just 2 short weeks she has raised over $2400! Julie Cornell from Channel 7 is doing an interview with her so be on the look out for that. Hannah Knudsen's (visit/hannahknudsen)school is having a fundraiser for In The Arms of Friends this week too in her honor. Thank you, Girls, for helping other kids fighting cancer even in the midst of your own battles!

If you are interested in walking in the walk for childhood cancer research this June 3rd, please go to the In The Arms of Friends website (link above or www.inthearmsoffriends.org) and click on "register". Then we can send you information about the walk. We are currently lining up sponsors, so please contact us if you would like your business or family to be one of our sponsors. The walk is at Village Pointe, so there will be GREAT exposure for your business! All the money will go to CureSearch, which is the leading national foundation for childhood cancer research. You can walk individually or put together a team. Your team can be formed to honor a cancer fighter you might know. We will have a team honoring Jake and we are working on a name for our team right now. Please join us on June 3rd and help us make childhood cancer a thing of the past!

I think that's it for now. Hope you have a great weekend. Love up those kiddos and please, please go give blood or platelets. There have been a couple kiddos that I know of this week who had to wait all day long for platelets to show up for them to get transfused. These kids and adult cancer patients too need blood and platelets to survive their treatment. Without your donations of blood products their cure is not possible. I will be there on Saturday morning, so join me!

Love, Kellie, Steve, Jake, Brandon and Benny Boozle

Wednesday, March 8, 2006 9:31 AM CST

Update on Friday - Jake is doing good. He has gotten up to about 35 spots and they are at the blistering and popping stage. We may even see some scabbing starting on some of the spots. He is bored and ready to go back to school on Monday, so hopefully his pox will cooperate. He is still coughing, but hoping that gets better as his pox scab up in the next couple of days. It has been great that it has been so nice as being outside has made his days here at home go faster. We rescheduled his scans for the 20th.
Thanks for checking in, Kellie :~)

Goodmorning! Change of plans. Jake won't be doing scans tomorrow as he has the chicken pox! He has had 4 cases in his class, so I guess it was inevitable for him to get them. He only has about 20 spots so far and is feeling good. He is itchy and has a cough, but otherwise is doing well. He did have the vaccine as did all the kids in his class that have gotten them. We will hope for a mild case and for his immune system to hold up through it.

All else is well. Ben is as busy as ever, Jake as funny and Brandon as sweet. Looking forward to having Jake home from school a couple of days - totally selfish on my part, I know, but I do like having them home!

Please visit the kiddos that especially need your prayers like Lizzie (ne/lizziegirl), Skylar (ne/skylarberry), Ryan (ne/Ryan), and Christi (www.christithomas.com). Check out Abby's site as she is having a website fundraiser for In The Arms of Friends - she is making beautiful little fairies and for a $5 donation to In The Arms of Friends, she will send you one! You can find her at www.caringbridge.org/visit/abbybridgewater. Thanks, Abby, for putting your time and talents to making a difference for other kids fighting cancer too!

Have a great day and please GO GIVE BLOOD!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Friday, March 3, 2006 2:15 PM CST

Hey, Everyone! New pics are up from the boys basketball season on the photo page. We were reminded in doing the radioathon for Children's Hospital on Thursday morning of how blessed we are to be able to have pics of all 3 boys just being normal kids and doing normal kid things. Watching them play basketball, walk into school, doing homework, brushing their teeth, having a snack, waking up in their own beds - we are so thankful for everything that makes up the normalcy of their lives. We pray so for the kids that are fighting so hard for that.

Scan day is coming closer and we hate this week leading up to it. We have two more years of scans every 3 months and then in the final year we will do them every 6 months. They are so close together still (most kids go to every 4-6 months after 2 years)because Jake's treatment was in a clinical trial. Initially I was glad he would have them more often, but now I think Steve and I could stand to have them spaced further apart. It's just very stressful. But we are thankful for clinical trials and research in finding better cures for these kids.

Count your blessings today and hug up those kiddos. Please go give blood as it's so desperately needed. I will update in the evening on the 9th after we get home from scans. Have a super weekend!

Love, Kellie, Steve, Jake, Brandon and Ben :~)

Tuesday, February 28, 2006 5:01 PM CST

Hi, Everyone! Thanks for stopping in and checking on us. All is well here and we have been having lots of fun. Last weekend was the Univ of Nebraska's Dance Marathon to raise money for Children's Hospital. We went down as one of the Children's Hospital families and it's so great because the students treat us like royalty. We had a great time dancing and playing until 2 in the morning! A couple of the Husker football players (Jordan Congdon and David Harris) came and played football with the kids, which Jake and Brandon loved! The got to wear their jerseys for a while too. Brandon was a dancing machine. He'd run into the crowd of students and start dancing like a mad-man so they would all form a circle around him. He also got up and danced for everyone during the break-dancing competition. He was certainly soaking up the limelight (sp?)! We got home about 3 and had to be up early for an 8 o'clock basketball game of Brandon's! It was Brandon's last basketball game and Jake had his later in the afternoon. It has been a great season for both of them and a lot of fun for us to watch.

Brandon turned 7 yesterday and we took some of his buddies out to eat last night. I can't believe he is 7!

Other than that we have just been enjoying all of this incredible 60 degree weather! Steve and the boys are out playing a little baseball right now. Soccer and Baseball will start up soon and we are getting excited for all of that.

Jake has scans coming up - they are March 9th. Please keep him in your prayers for no evidence of disease.

Thanks for checking in on us and please keep all the kiddos still fighting, in remission and those that are angels in your prayers - their families too!

PLEASE, PLEASE, PLEASE GO GIVE BLOOD!!!

I will post new pics on here tomorrow!

Love, Kellie, Steve, Jake, Brandon and Benjamin :~)

Sunday, February 19, 2006 8:51 PM CST

Jakieboy is HOME!!!! We picked him up from the airport tonight and we got HUGE hugs. He looked very glad to be home. He is full of great stories tonight and I am hearing Chris Kelsey and Jared Tomich's name over and over. He loves those guys. Thank you so, so much to Chris, Jared, all the other players and counselors that I am hearing Jake talk endlessly about tonight. Thanks to Anisa for making sure Jake and all the other kids stayed safe and were well taken care of. Thanks so much to the Grant Wistrom Foundation and Diane Brendle for organizing such a great camp along with the Jerry Wunsch Foundation. Jake came home with a suitcase full of goodies and tons of great stories. I asked Jake why he liked this camp so much and he said, "Because it was just so fun and it's always fun to be with other cancer kids - it's nice being with kids that have walked in my same shoes. That's how Jerry said it and he's so right about that." In this weekend, Jake went skiing, snowmobiling, tubing, disco bowling, on a sleigh ride, saw fireworks, ate around a huge bonfire, was fed very, very well, got to swim with NFL players throwing him way up in the air (good thing Mom wasn't there to see that!), play video games, watch movies and just love up being a kid who just happens to also be a cancer survivor. We cannot say thank you enough and we can't begin to say how great it is to have him home!

The rest of us had a great weekend in the midst of missing Jake. We stayed at a hotel last night with one of Brandon's buddies and Tanner's family and had a great time at the pool. Brandon had a great baseketball game on Saturday and scored around 12 points! He has been kind of dumpy when we are just here at home, but tonight his smile shows the comfort of having everyone in the family back where they belong. Of course Steve and I's minds have wandered this long weekend to thoughts of how this would be a little of what it would feel like with Jake gone from our lives. Most of all it made me so, so sad for our friends that have lost their sweet little ones as it gives me a TINY glimpse of their endless pain and emptiness. For those of you that are those friends with angel children, please know that our hearts and prayers are endlessly with you guys.

Busy week planned coming up with lots of meetings including an In The Arms of Friends Board meeting where we will be planning more for our Walk for Chilhood Cancer Research that is on June 3rd here in Omaha. If you would like to help with this event, please e-mail me (link below) and let me know. This weekend we are honored to be one of the family representatives for the Univ of Nebraska-Lincoln's Dance Marathon that raises money for Children's Hospital. We will be dancing all night with the UNL students and we can't wait! Jake's goal is to stay up all night this year. He and Brandon's favorite part of this event is when the Husker Football players come and play catch with them. It's great hanging out with other Children's Hospital families too. Our Children's Hospital here in Omaha is the BEST and we love to do things to help them raise money!

Thanks so much for checking in on us. I will work on getting some pictures of Jake's time at the Circle of Friends camp on here soon. Please keep our little friends in your prayers - especially Lizzie (ne/lizziegirl), Skylar (ne/skylarberry), Hannah (visit/hannah knudsen), Abby (visit/abbybridgewater), Joey (visit/joeythompson) and Christi (www.christithomas.com).

PLEASE, PLEASE GO GIVE BLOOD!!!!! BIG SHORTAGES RIGHT NOW!

Love, Kellie, Steve, Jake, Brandon and Benny Boo :~)

Wednesday, February 15, 2006 1:37 PM CST

Update on Friday - We are at the halfway mark of Jake being gone and I think we are all wanting him home. We have talked to him each night and he is having a great time! When they were in the Packer's locker room, Jared Tomich noticed that there was stuff in Ahman Green's locker, so he took Jake and Dillion (the other boy from Nebraska) on a hunt for him. They found him in the training room and Jake told me it was great meeting him! "I talked to him, Mom! It was Ahman Green in the flesh!" He loved skiing yesterday and the cookout and sleigh ride were great last night. He has spent a lot of time in the pool and has made special friends with Chris Kelsey (played at the Huskers and is now a Buffolo Bill). He has had a cold and has had to use the inhaler some, but overall he is doing great. He sounds like he is having the time of his life. Brandon is holding up ok, but is bored and gets teary if we talk about Jake. He and Grandpa went to a movie last night. He has a basketball game tomorrow and then we are going to spend the night in a hotel that has a little water park. I think the Lusks might be coming too! Tanner's scans were good yesterday!!! Yeah!!!!! We pick Jake up on Sunday night and we can't wait! Will update more on Sunday night. Thanks for checking in! Kellie :~)

Hello! Thanks for stopping by and checking in on us. Jake left for Wisconsin this morning. There are new pics on the photo page of the send off. We all got up early and took him to the airport. The kids and Anisa were cute in their matching sweatshirts and all 4 of the kids were so excited to go! When they arrive in Green Bay, WI this afternoon they are heading to the Packer's field for a tour and then up to Wassau to check into the hotel. They are scheduled for skiing and then a sleigh ride and cookout around a fire and fireworks tomorrow. Jake was so pumped to go this morning and we were so excited for him. None of us shed any tears saying goodbye because we are just so happy for him to be able to go and do something as awesome as this! Thanks so much to Grant Wistrom and his foundation for providing these kids with this experience. Sometimes I think these things should only be reserved for the kids that are on treatment, but then I have to think of all Jake went through and how incredible it is that he survived and how hard he faught. Really, that should be remembered and honored and this trip is a great way to do that. Although he is not on treatment, his life is still about his cancer and remission and dealing with the side effects. Ok, now I am in tears thinking of how cool it is that he gets to go and still gets to feel special and remembered for the warrior that he is. It is also so good for the kids on treatment to see kids that have gone through it and have made it.

We have a fun week planned for Brandon and us as we wait for Jake to get home on Sunday night. Brandon has the next couple days off of school, so tonight he has a buddy spending the night. We have other fun stuff planned for him this weekend too. Brandon needs to be honored also for the incredible brother he has been through all of this. He handles all the attention Jake gets with such selflessness. He is such a great kid.

We celebrated the boys' birthdays with our families this past weekend. Jake turned 9 on Jan 22nd and Brandon turns 7 on Feb 27th. Ben is doing great. Still not really talking much, but he is really growing and everyday finds a new mess to make! He always goes and puts on my shoes, a stocking cap, gets a purse and his keys and waves bye-bye to me. I run for the camera and he figures out that I want to take a picture of him and he whips off all of his gear, so I don't have any picture to take! He is too smart! He sure is full of hugs and giggles!

Please remember all the kiddos fighting hard in your prayers. Our walk to raise money for childhood cancer research is set for June 3rd at Village Pointe in Omaha. Please let me know if you want to help or would like more info!

Have a great day, go give blood and hug up those kiddos!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

p.s. I picked up Brandon from school today and he said in a panic as he got in the car, totally forgetting about taking Jake to the airport this morning, "I can't find Jake!" When I reminded him he was in Wisconsin, he started crying! I tried to reassure him with "He's only going to be gone for a couple of days, Brandon." He said through his tears, "You mean 5, Mom, and that's a long time!" He was better once I reminded him about his buddy coming over tonight - thank goodness we set that up for tonight!

Wednesday, February 1, 2006 10:30 PM CST

Hello! I put the snowmen on here in hopes of some snow. This winter has been so mild it's almost scary. 50-60 degree weather in January is nice, but come on, we need some snow! Things have been busy and routine around here. Nothing better than busy and routine! We are all doing great! The boys have been busy with baseketball and school. Those basketball games are the most fun thing to watch. The difference in skill level between first graders and third graders is amazing. Brandon is one serious player out there, living up to his nickname "Hammer" and LOVING every minute of practice and games. Jake is so darn scrappy. What he is missing in speed from those chemo damaged feet, he makes up for in heart that's for sure. It does make us so nervous when he's under the basket in the thick of things, fighting for the ball. I just hold my breath thinking, "Please don't get hit in the head." I think at some age level, basketball will have to be added to the list of sports Jake can't play. Big flying elbows don't mix well with a skull with a big chunk missing. For now, though, it seems ok and he is loving being able to play.

Jake is getting ready for a big trip that is coming up. This month he gets to go to The Circle of Friends Winter camp in Wassau, Wisconsin through the Grant Wistrom Foundation. Grant Wistom played for the Cornhuskers and is now a Seattle Seahawk. His foundation runs camps and special programs for kids with cancer. This year 4 kids from Nebraska are going and Jake was selected as one of those kids! He and 3 other kids (2 on treatment and 2 off treatment kids) and Anisa (oncology nurse from Children's and good friend of ours) will fly to Green Bay on Feb 15th. They get to tour Lambeau Field and then travel to Wassau. There they will spend a long weekend going skiiing, snowmobiling, tubing, disco bowling, sleigh riding - they have so many neat things planned for these kids. The kids come from all over the country and many of the camp's counselors are college and NFL football players! Yesterday he got a big suitcase and clothes for the trip - warm up suit, long johns, boots, hat, gloves, winter coat, sweatshirt, t-shirt - all compliments of the Grant Wistrom Foundation! He is so excited to go and we are excited for him, although we will miss him like crazy! Brandon will be beside himself without Jake. We have some fun things planned for him though to fill the emptiness of the days that Jake is gone. The bummer thing is that Grant is probably not going to be able to come this year as he has to have shoulder surgery the day after the Super Bowl. Jake will miss hanging out with Grant as he is such a great guy, but I'm sure he'll make tons of new buddies and love every minute of it. So who do you think we are for this weekend? GO SEAHAWKS!!!!!!!!!!!

This weekend we are planning on going to the Lancer's Hockey Game. At a Children's Hospital Fundraiser we bid by proxy on a suite for the game with the Hoie family, so we are bringing some friends and going to cheer on the Lancers! Tomorrow night Survivor starts, so the boys are pumped for that! They hate the story lines of the show, they just want them to, "Get to another challenge!" Of course we have basketball games and will be watching the big game on Sunday. Did I mention we would be rooting for the Seahawks?

So many kiddos to pray for. Some of our very special friends that really need prayers this week are Lizzie (ne/lizziegirl - hepatablastoma), Christi (www.christithomas.com - neuroblastoma) and Skylar (ne/skylarberry - neuroblastoma). Please keep Tanner (link above - Ewing's Sarcoma) in in special prayer this coming week as she has scans. We know everything will be just fine with Tanner - her miracle WILL continue! I could go on and on with websites of kids that need prayers that are fighting so hard for their tomorrows. In their honor along with the kids in remission and the kids who have lost their battles, we are planning a walk this summer through In The Arms of Friends for CureSearch - the leading childhood cancer research foundation. It will be in June and we are hoping for huge support through sponsors and walkers. A cure needs to be found and unfortunately, childhood cancer gets little priority in government and private funding for research. Please keep checking in on our site and at www.inthearmsoffriends.org (link above) for more information on this walk. If you are interested in helping with the planning of this event, please contact me (e-mail below).

Thanks so much for checking in on us. Please GO GIVE BLOOD and give, give, give of your time and money to the many worthy causes out there. Love up those kiddos and make it a great weekend!

Love, Kellie, Steve, Jake, Brandon and Benny Boozle :~)

Wednesday, February 1, 2006 10:30 PM CST

Tuesday, January 17, 2006 5:51 PM CST

Hey, Everyone! Thanks for all the prayers for Lizzie. Please keep them coming and keep visiting her - I'm sure she loves reading all of them. Her fight still continues, but she is going home today. (ne/lizziegirl) Josh Larson had clear scans today and we are thankful for that!

All is well here. Steve just took the boys to eat and then to Jake's baseketball practice. I have a jewelry show to do tonight. It has been a busy couple of weeks. After Christmas we made a trip out to McCook, NE (5-6 hour drive depending on Benny's mood) as my Great Aunt Donna died. Although it was a sad occasion, it was nice seeing lots of my mom's side of the family that we love and miss so much. We had a great New Years - quiet as Benny was running a fever. We drove downtown for the big fireworks display and when your dad does a lot of contruction work, you have the inside scoop on the best places to watch them. It was great. Jake and Mom were the only ones that made it awake till midnight. Right after the New Year we went to the Great Wolf Lodge in KC. It was so fun. I think we spent more time in the arcade than the water park as the chlorine smell was getting to us some and Benny had a cough anyway. We drove right to the doctor on our way home from KC as Ben was feeling pretty rough. He had an ear infection - only his third one - totally amazing for our boys (by this time both boys had tubes). This past weekend we drove to Cedar Rapids for a quick trip to see our friends, the Gilberts. We had a great time.

Jake and Brandon both started baseketball and that is going well. This is the first time Jake has ever played. He is doing well and his running really is almost normal at times now. School is going well for both boys. Benny is talking a little more here and there. Of course he is into everything and good at telling us when he doesn't like something or he wants something RIGHT NOW! We have now coined him "The Screecher!"

Jake's birthday is this weekend. He will be 9 on the 22nd! On Saturday night we are taking a couple of his buddies to the Maverick hockey game and then having them spend the night. Ben will stay home with Grandpa so we can all enjoy the game. Three years ago on Jake's birthday we drove him to Iowa City for his Embolization surgery. A hockey game and sleep over is MUCH better!

We are having a big budget and planning meeting tomorrow night with our In the Arms of Friends Board. We have big plans for 2006 with our ongoing programs for families facing childhood cancer. New this year will be a walk we are planning early this summer to raise money for Childhood Cancer Research. We are always looking for groups, companies and individuals who want to sponsor us in some way. If you are moved by these kids' stories and really want to do something to help, organize your friends and help us raise money! Whether it be a bowling or golf tournament, Karoke party or in honor of a birthday or anniversary, there are many ways to help us be able to help these brave kids. You could organize something at your work or school (company sponsorship, dress down days, donation pool, etc) or tell your service organization or church group about us. Liz and I are more than willing to come out and speak to your group. Please let us know if you would like to help. My e-mail is below and there is a link to our foundation above. Thank you!!!!!

Thanks for checking in on us. Please keep up your prayers for all the kiddos who are angels, those that are fighting and those that are in remission. As always special prayers for their families too. Please go give blood and love up those kiddos!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Sunday, January 8, 2006 6:39 PM CST

update on January 12th. PLEASE have Lizzie Stratton in your prayers today as she was taken in for emergency surgery today to try and remove the tumor on her spine as it was threatening paralysis. I will update her site as we get news. Please visit her and offer her and her family notes of encouragement. Thanks!
Lizzie's Website

Hi, Everyone. This is the day three years ago that we found Jake's tumor. Eerily ironic we happened to drive right by Children's hospital tonight at about the same time we were pulled out of the MRI and Dr. Harrison (pediatrician) told us that they found a tumor in Jake's head. We were immediately admitted and all the bad news that surrounded Jake's tumor and the little chance we had of ever getting it out followed us up to room 621. Last night Steve and I did not sleep well. Jake had gotten up in the middle of the night three years ago-the night before his apt with our pediatrician that led us to do an immediate MRI (thank you, Dr. Harrison!)-and said his head hurt and that he felt sick to his stomach. It was only a 5 minute episode, but one in which Steve and I knew was probably the beginning of something horrible. After we got Jake and ourselves back to bed, Steve said to me, "I think this is the end to life as we know it."

But that day three years ago is also the beginning of Jake's life being saved. From our fast acting pediatrician to our awesome nuerosurgeon (Dr. Hellbusch) who found a way with the help of a Doc (Dr. Chaloupka) from the Univ. of Iowa to get that tumor off of Jake's skull and save our boy. Then to Dr. Abromowitch (oncologist), the awesome nurses of the oncology clinic and the 6th floor at Children's and Dr. Raman and the staff at the radiation oncology Dept at the Univ of Nebraska that helped him get rid of the cancer once and for all. And now the docs and nurses that help us monitor his remission status and overcome the deficits he has from treatment. Amazing what over half a million dollars and the hard work and brain power of hundreds of professionals can accomplish - the wonderful life of our soon to be 9 year old son! Priceless!

Three years ago tonight, Steve and I cried for hours in the bathroom of Jake's hospital room, trying to make sense of what we had just been told; not really knowing that our journey was going to reach far beyond the miracle we would need to get that tumor out. I remember in that conversation saying, "What are we going to do?" through many tears and Steve saying over and over, "We are just going to love him. Through all of this we will just love him."

Tonight is a much better night. ALL of the Beresh boys are in the basement, playing a mean game of knee football. Dad is orchestrating the whole thing while Jake and Brandon play with Superbowl passion and Benny toddles around them. Thank God for better nights!

Many to keep in our prayers including Ryan (ne/ryan), Lizzie (ne/lizziegirl), Skylar (ne/skylarberry), Abby (visit/abbybridgewater) and Hannah (visit/hannahknudsen) - they are fighting hard for their better nights. Leave them a note and encourage them as they get there.

Love up those kiddos and Please, Please GO GIVE BLOOD!

Love, Kellie, Steve, Jake, Brandon and Benny (Screech) :~)

Wednesday, December 28, 2005 11:58 AM CST

Hello! This is the second time I have tried this today - Ben was not having any part of Mom being on the computer earlier. There are new pics up on the photo page.

As I sit here typing I am surrounded by the most wonderful sounds of a house full of kids. Jake is upstairs singing his heart out as he is putting a Lego set together. Brandon and Ben are playing in the basement; tons of laughter and the occasional squeal of a toddler ringing it's way up the stairs. It's a cloudy day outside and the glow of the lights around me fill in the spaces between the sound. I love having the boys home.

Our Christmas was great. It was so fun spending time with family and friends and enjoying the season. It has been warm here and not at all like Christmas weather, but on Christmas morning there was just the slightest dusting of snow on the ground. Tanner and her family celebrated with us on Christmas Eve. What a wonderful miracle her little life is and we are so thankful of that miracle all the time. So thankful for the doctors and nurses here that did not consider her a hopeless case like others elsewhere did.

We are also so thankful for another year of Jake's remission and for the work the doctors and nurses do for us still to help us along this road. We are thankful for the health of our other children and in ourselves.

Beyond our gratitude for good health, we are most thankful for the people in our lives - the friends, family and aquaintances that fill our lives with fun, laughter, good conversation, a shoulder to lean on, an understanding ear and the awesome feeling of being needed. Thank you for your continued support of our family this year. Thank you for your continued support of our foundation - In The Arms of Friends - and in turn your wonderful support of the many, many kids and families that are fighting so incredibly hard against childhood cancer.

We look forward to the things 2006 will bring. It will be another year filled with new people and new experiences, the wonderful routines of our everyday lives, sadness in losing good people and in facing the challenges that come with life; and many more days filled with the awesome sounds of our children singing, playing and laughing and the light that will fill the spaces in between.

All the best to you and your families in 2006! A special wish for healing and peace for those families we know and don't know that have lost their children to cancer or anything else. There is no greater loss than that of a child. For those of us that don't know that pain, may we live our days in the coming year to the fullest in honor of those kids and the parents and siblings that miss them dearly.

Love up those kiddos and go give blood!

Love,
Kellie, Steve, Jake, Brandon and Benny :~)

Monday, December 19, 2005 3:01 PM CST

Hi! I have new pics up on the photo page,so you will have to check them out.

All is well here. Lots of activity in trying to get ready for Christmas and get last minute gifts bought. The news of last week's good scans has sunk in and we are ready to bring on Christmas and ring in a New Year! It always takes a couple of days to come down from the anxiety we feel before scans. Then the news brings more relief than anything. Not really a big celebratory feeling, just extreme thankfulness for Jake's well being. It's kind of like getting a couple months extension on our "Get out of Hell Free" card. Sooooo thankful for that extension! This set of scans marked two years of Jake's remission and almost three years since his diagnosis. This time three years ago we had just returned from Orlando on vacation and were busy with Christmas preparation. I was following Josh Larson's website, still in disbelief of his cancer diagnosis. We had no idea what was to come in just a couple of weeks. Jake was feeling just fine and all the while that cancer was inside, killing him. Amazing what has happened the last three years. So many great things overshadowing the bad.

We had Christmas with Steve's immediate family on Saturday. Santa paid us a visit! Brandon was enamoured by him - totally believing that he indeed was the real thing. Jake loved it too, although he doesn't think those guys you can get close to are the real thing - they are just Santa's helpers. He still believes in the "real thing". Ben wouldn't get near Santa. Santa brought each boy a special gift - Denvery Bronco jerseys. When we pulled Ben's out and put it on him he was sooooo excited that he actually had a jersey like his big brothers. He loves wearing it and keeps pointing to it and saying, "Ho, Ho, Ho!"

We hooked Ben up with a buddy yesterday (Grandpa Gary) and Steve, I, Jake and Brandon went to see Chronicles of Narnia. We love that story and were so excited for the movie. It was great. We did a little shopping afterwards too and had such a good time.

We will spend Christmas Eve over here with my family and Tanner's family, and then will have Christmas afternoon with the Beresh extended family. We hope all of you have a wonderful Christmas! Please keep all of our friends in your prayers including the kids with links on here and some others (ne/lizziegirl, ne/ryan, ia/ethangrimm, ne/brooke, ne/skylarberry, visit/abbybridgewater, visit/hannahknudsen).

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Thursday, December 15, 2005 3:21 PM CST

Hey, Everyone. The results on Jake's brain MRI, skull and chest x-ray all look good! The radiologist called everything stable as Jake's head is too much of a garbled surgical and post radation mess to ever be considered normal. All of Jake's blood work was great and he checked out with the doc just fine. We all just got the only Christmas present we were really wanting!

Steve and I went to Brooke Brion's services on Sunday night and it was beautiful. Her mom and dad and brother got up and spoke and many tears were shed. No matter how many I go to (this being my 6th one), funerals for children will be something I never get used to. Brooke was such a fighter and had such a strong spirit. Prayers for her family (ne/brooke).

Monday night we had a great dinner with 3 other families we have met in this fight against childhood cancer. Lizzie's family, Morgan and Charlie's family and Angel Haley's family and us all met up and we had a great time. Good therapy for all of us. Please keep Haley's family (link below) in your prayers as they have their first Christmas without her and prayers of fight, fight, fight for Lizzie (ne/lizziegirl) as she battles a new tumor. Lizzie is such a incredible girl - please visit her site leave her a note of encouragement and tell her Jake sent you.

We have been busy getting ready for Christmas and all the other fantastically normal things that go with being a busy family. The boys had a great time playing in the snow before it all melted. Maybe we'll get some more before Christmas - hope so!

Thanks for checking in on us. Thank you for all the prayers and notes of encouragement! They mean so much to us!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Wednesday, November 30, 2005 10:33 AM CST

UPDATE on Friday, Dec 8th - News from both sides of the spectrum today. Tanner's scans were clear this week and we are rejoicing in that good news! Miracles DO happen! We are sooooo happy for the Lusk family (her link is above).

And in great sadness we report that Brooke Brion died this morning (ne/brooke). Please visit her site and leave a message for her family - you can tell them Jake sent you. She is now free of pain and surrounded by friends and dogs of every size and shape. We hurt so for her family, and hate having to say goodbye to another precious child.

Goodmorning. Ben fell asleep in the car early this morning, so I thought I would take advantage and do a little update. All is well here. We had a great Thanksgiving. Had some of Steve's family over and it was a lot of fun. We worked on getting Christmas stuff up all weekend. Thank goodness we got the lights up outside before the big cold came through here on Sunday. We were very fortunate to miss all of that big blizzard that rolled through the plains this weekend. Much to the boys' dissappointment, we only got a dusting of snow.

It's a busy month, but with all good things. Christmas parties and shopping and getting together with friends. This year, Christmas almost feels normal. We do have scans looming on the 15th, so I say that with some caution.

Unfortunately, our hearts are very heavy with the Brion family. Their little girl is fighting so hard. Her mom, Darby, is a good friend and we hate to see another family having to go through this. You can visit them at www.caringbridge.org/ne/brooke and leave them a note. Tell them we sent you. All words of support mean so much.

Please have prayers for Tanner's family (link above) too as she has scans on the 5th. We have great faith that everything will be clear! Tanner is amazing with all she has been through and how well she has done. If she wasn't bald, you'd really have no idea that she has been through the harshest of treatments.

So many friends of ours are still fighting. Please visit Ryan (ne/ryan), Skylar (ne/skylarberry), Ethan (ia/ethangrimm)and Lizzie (ne/lizziegirl) to offer words of support. And then there are the families that have lost their little ones this year - Haley's family (link below), Brant's family (link above)-unfortunately I could go on and on. Always too prayers for the kids in remission that they STAY THERE!

Don't mean to be depressing, but just wanted to mention some of our friends as their battles seem way more important than anything else I could write on here today.

We are having a blood drive at Wheeler Elementary School on December 10th from 9-3. Wheeler is at 178th and Harrison. You can e-mail me if you would like to schedule a time or you can drop in also. Please, please give blood wherever you are - it's the greatest gift you can give this season. Please be generous this year too with your donations to foundations and gifting for the needy. There is so many wrongs to right out there and so many people that need help. Don't forget them.

We have a fun weekend planned with the boys going to birthday parties and Steve's grandma celebrating her birthday! Happy Birthday, Fern! Brandon has a basketball game and those are so much fun to watch. We have three little boys to hug up and have fun with all weekend, and we relish that so!

Thanks for checking in on us and all of our friends!
I'll update again after Jake's scans on the 15th if not before!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Tuesday, November 22, 2005 4:39 PM CST

Good afternoon! Sorry for the delay in updating. I have been working on getting the In the Arms of Friends newsletter out and it has been taking up my computer time. All is well here. The boys are doing good and we are getting ready for a long Thanksgiving weekend. So many things to be thankful for with family, friends and health ranking in the top 3. Just want to say thank you to all of you that have supported our family for the last 3 years. Thanks to all that have helped us, helped our foundation and to those that read this site. We truly are blessed!

We have a small Thanksgiving dinner planned here Thursday with some of Steve's family. Then we will be having fun all weekend putting up the Christmas decorations. The boys and I already have our little village up as they just couldn't wait one more weekend.

I will update some more and post more pictures when I have more time after Thanksgiving. For now, please keep our friends in your prayers that have lost their little ones, are still fighting or are in remission. Jake has scans coming up on December 15th. With all that happened after the last set of scans, these have really come up quick. We have faith that everything will be all right. Those scans will mark Jake's two years of remission!

Please go give blood - the need is always great, but especially around the holidays! Love up those kiddos and Happy Thanksgiving!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Thursday, November 3, 2005 2:26 PM CST

Hi, Everyone! Thanks for coming by and checking in on us. I have new photos in the photo page from Halloween. Actually Steve's brother gets the pictures on there for us, so thanks, Jeff, for doing that for us computer challenged folks!

All is well here. The little boys in the house are feeling and doing well. Jake's scar behind his ear from his last surgery is hardly visible and he has had no problems with that. All of that seems like such a bad dream now. Hopefully December's scans will be calmer and cut and dry to read with no evidence of disease!

The boys had a great Halloween. Their school parties were a lot of fun and they had such a good time trick or treating. The weather here has been GEORGEOUS and unseasonably warm, so that made Halloween nice. Steve said it was hard to keep up with the boys. Jake was Annikan Skywalker, Brandon was Davy Crockett and Ben was a bee in the couple of minutes he kept his costume on. Ben trick or treated to the next door neighbors and he had a great time pressing the button on the fog machine when kids came to the door here at home.

We went to Brant Hamilton's visitation on Tuesday night. It was so well done and such a wonderful tribute to Brant. Please keep his family in your prayers.

Other than that not much going on. We had the boys' conferences at school and all is going well there. Jake's teacher said if he didn't know it, he would never be able to tell that Jake essentially missed a year and a half of school. He has worked SO HARD at catching up and staying there, and we are so proud of him. We are proud of Brandon too as he is doing exceptionally well.

So things are thankfully quiet around here. Please keep all of our friends that are fighting so hard in your prayers, especially Brooke (ne/brooke), Ryan (ne/ryan)and Lizzie (ne/lizziegirl).

Go give blood and hug up those kiddos!
Love, Kellie, Steve, Jake, Brandon and Benny Boo :~)

Sunday, October 23, 2005 8:16 PM CDT

UPDATE ON SUNDAY - Prayers for Brant Hamilton's Family as Brant passed away last night. Goodnight, Sweet Brant, Goodnight...

UPDATE ON TUESDAY: Please keep some of our very special friends in your prayers today as they deal with the horror of Cancer in their children. For the Hamiltons as their beautiful little boy Brant still fights so hard in his final stages of the disease (link above). And for our friends the Brions who have been sent home with their little girl Brooke on Hospice Brooke's Site Seems like days like this when we get news of our little friends suffering so, I can get nothing done. This is another side effect of having a child with cancer - loving and losing too many awesome little friends that you meet along the way.
END OF TUESDAY UPDATE.

Hello! We are back from Florida and had a great time! New pics are in the photo page from the trip. We did Disney, the beach, Daytona USA, ate some of our favorite Sonny's bbq and saw much missed friends. The weather cooperated and we just had a great time. Benny was such a trooper through all the parks and activity. Sometimes he would just go from one container to another (car seat, stroller, high chair, stroller, back to car seat) and complained very little. Jake was quite the ride goer this time around, braving Space Mountain and the Tower of Terror and even Brandon got brave enough for Splash Mountain by the end of the trip. Ben took it all in and loved seeing all the characters. He was cute b/c he loved to run up to them, but never wanted to get too close to touch them. Jake did great on the trip with no problems with the area he just had surgery on and we even saw very little of his "chemo feet" (amazing that his strength in his walking just seems to improve even now almost two years after treatment ended). Last time we had been to Orlando (where we used to live and where Jake was born) was almost three years ago, right before Jake was diagnosed with cancer. It was a victory trip for us of sorts, and we really loved being back there to visit.

We got back and the weather has turned cold here, but it is so pretty seeing the trees turn and having a real feel of fall in the air.

Just wanted to share something that really struck Steve and I tonight from another little boy's website. His name was Cavion and he just died from Luekemia and his dad writes in his journal, "Everyone who wants to honor my hero's passing can do so in one simple act...Live your life with everything you've got. When it feels like you've got nothing left, find some more because that's EXACTLY what he did and this is a perfect memorial. There are so many people who wish they had a second chance and if you don't use yours it's a disservice to them all." Such powerful words from a grief stricken father of such a brave young man who really fought like hell to survive his cancer (www.caringbridge.org/ne/cavion). It's so true. So many people are stuck in the waiting place. Waiting to do this or that in their life when they have a certain number in their bank account or when they get the next promotion or house or car or diploma. Or maybe they are just waiting because they are afraid. If that is you, let it go, because life is passing you by. Before you know it there won't be anymore of your life to live and all the souls out there that are watching from above will be shaking their heads thinking of what they would have done with all that time that you just let go of. For all the little ones and all the great men and women you know that are out there right now fighting so hard to live whether it be from disease or injury or circumstance, stop waiting for the right time to live your life and start living in the time you're given. For all the Cavions and Brants and Tanners and Jakes and Joshs that have fought so hard to have their life, honor them by living yours. I mean really living, loving and experiencing all the good and bad that comes with it. Don't be afraid and make the most of every moment.

I've got end this journal and go live some of my life with the four best parts of it downstairs in "Man Heaven" watching the end of "The Phantom of the Megaplex" on the Disney Channel. Nothing sounds better than that right now.

Thanks for checking on us, give blood and LIVESTRONG,
Kellie, Steve, Jake, Brandon and Hurricane Ben :~)

Thursday, October 13, 2005 1:32 PM CDT

Hello! All is well here, thank God! All the boys are doing great and we are just getting ready for our Florida trip. We are so excited to go! It will be great seeing old friends (we used to live there) and hitting all the fun parks with the boys. I'm sure we'll have lots to share when we get home!

Jake has recovered well from surgery. We went to see Dr. Thedinger this morning and he said it is healing up great. There is some fluid in his middle ear, but that is to be expected after surgery. We will go back in a month and check things out again then. We will be taking some pain meds and decongestant for the plane ride just in case Jake has any pain up in the air.

The photos you see on this front page and on our photo page were taken by Liz Larson (Josh's Mom) www.lizlarsonphotography.com. We took them when we thought Jake was relapsing, and Liz was so sweet to fit us in. We were thinking we wanted to get some good pics of all of us that weekend before Jake got sick as it would happen that fast. We did pretty well even for being heartbroken and scared to death! Benny was not in the mood for pictures by himself that day, so we will try again later with just him. Thanks again, Liz, for doing such a great job and for being such a great friend! Looking at those pictures will always remind us of what we thought was happening to our sweet little boy and how awful that was. We were so numb after hearing of the clear pathology reports that it took a couple of days for us to relax and breathe a sigh of relief. It's such a weird feeling because each clear scan or clear path report gives no promise for next time, so it is hard to celebrate and really rejoice. It just means we are ok for a little while until the next scan or next symptom. We know scans are coming around again in December and the feeling of unrelenting fear will be creeping up again on us soon. I guess it doesn't ever go away, just that sometimes it's sharper than others.

Please check in on our friends, the Hamiltons, as they say goodbye to their precious boy, Brant (link above). Tanner is back here in Omaha and even went to school a couple of days this week - her and Brandon are in the same class. It is great to have the Lusks back here again and Tanner is doing great! She is such an amazing kid! They will do scans in a month or so, but for now we celebrate Tanner being cancer free once again!

Enjoy the weekend and this awesome fall weather! The leaves are just starting to turn here and we are getting so psyched for Halloween! Please go give blood - HUGE need as always! Love up those kiddos!

Love, Kellie, Steve, Jake, Brandon and Hurricane Ben :~)

Wednesday, October 5, 2005 2:33 PM CDT

I just got off the phone with Dr. Thedinger. The pathology reports are CLEAR! Fibrous tissue that he called chronic inflammation from radiation was all that was in there - no malignancy! So happy and relieved over here at the Beresh house! We can stop putting the Florida plans on hold and breathe a sigh of relief that we got through this latest scare. I'm sure there will be more of them in the coming years, but I hope that they are not this scarry. We have been on such an emotional roller coaster while just wanting to get off the whole time over the last two weeks. We are so glad this is the point we could get off on. Next set of scans come in December - now we have a new doctor that joined as a member of the "lets try and interpret Jake's funky MRI's" team. So thankful so many people take such a stake in making sure of what they are seeing on a scan. As Jake's oncologist once told us an MRI is not the best tool for finding and interpreting cancer, it's just the best we've got. Thanks again to all the docs and nurses that have helped us through this. Have I ever said how thankful we are to be here in Omaha?!? I think I have.

So Jake is doing well. The first night after surgery (Monday night) was rough. He had pain and was sick to his tummy. He couldn't keep anything down, including his pain med. He was pretty dizzy and just feeling crummy. We finally got him to take the pain med and then go to sleep even though he was telling me the whole time as he was falling asleep that he was going to throw up. He made it until 4:30 am and woke up saying his ear hurt, but his tummy felt fine. Thank goodness! So yesterday he laid around and towards the evening felt like he was pretty comfortable and stable enough to even go play up in his room. He has been eating and taking his meds well. We took his dressing off yesterday morning. His incision looks great - it runs down the crease of the back of his ear. Basically they flopped his ear forward and drilled out the inside of his matoid bone. He is doing well today and he, I and Ben even ventured out for a trip to the store. I think he got a little car sick on the way home, but did well. He is keeping his neck stiff and tilted to one side in true Jakie fashion. Whenever he has an IV or has surgery, he stiffens up the affected body part like he can't even move. It's pretty funny. I think we will try him in school tomorrow. He will be glad to see the kids, but I know he has really enjoyed being at home.

I am feeling much better after fighting a bad bug for the last two weeks. Not a great two weeks for me to be so sick, but now we are all feeling good in health and heart and can start looking forward to our trip.

Thanks so much to all of you that have checked on us, prayed for us, asked others to pray, signed the guestbook or e-mailed with awesome messages, left us goodies, called and offered so much friendship the past two weeks. It's amazing how good and kind people can be. We are back up on our tenous edge at the top of the mountain and hoping like heck to stay there forever! Prayers for all the kids fighting so hard still. Prayers for Brant Hamilton and family (link above) and Brooke(ne/brooke)who need it especially right now.

Give blood and love up those kiddos! Finally fall weather is here (what was with those 90 degree days this past week?) and we actually feel like doing some decorating! Jake and I bought a whole bunch of cool gourds this morning that we are going to go put out on the porch right now. Enjoy the day!

Love, Kellie, Steve, Jake, Brandon and Benny Boo :~)

Monday, October 3, 2005 4:38 PM CDT

We are home and Jake is comfortable on the couch. He has had a little tummy trouble, but seems to feel good now and is keeping crackers down. He is a little dizzy and has a bandage and cup over his ear that we can take off tomorrow morning. The doc said that it did not look like anything suspicious. It was scar tissue and fluid. They sent everything to pathology and will call with results tomorrow afternoon or Wed. Jake will miss a couple days of school. Hopefully by Thursday we will have good results in our pocket, and Jake feeling good and back in school. Thanks for all the prayers!

Love, Kellie, Steve, Jake, Brandon and Ben :~)

Thursday, September 29, 2005 1:10 PM CDT

Update 4:20 by Steve.

We are home and everything went well. Jake is a little sick to his tummy, but otherwise ok. The surgeon and pathologist that was in surgery thought it looked like fluid and scar tissue. They didn't believe it looked like tumor. They have sent it to the lab to verify their thinking. So, all in all it looks pretty good. I am sure Kellie will update later.

Hi, Everyone! Sorry it has taken me so long today to get to this computer. Our appointment this morning went great!!! Steve said afterward he felt like he just won the Superbowl. Well at least we feel like we are in the 4th quarter and we are 20 points ahead. They tested Jake's hearing which was great and looked in his ear which looked normal (improvement from last week's bulging, grey ear drum) and then we looked at the scans. Basically the ENT thinks the concerning area in Jake's mastoid bone is radiation effects. This means that it looks like burned up tissue that will constantly change and look different than normal on an MRI. There is no way to be totally sure without doing surgery, so tenatively we have a mastoidectomy scheduled for Jake on Monday afternoon. They make a half inch incision behind Jake's ear, clean out the tissue in the mastoid bone (bone that sticks out right behind your ear) and then send it to pathology. About a 15-20 minute outpatient procedure. So we are feeling great this afternoon and Jake is back to school. After the results come back next week from pathology I think we will indeed feel like we did just win the Superbowl.

It has been a horrible week. I can't even begin to tell you what this is like. This is what sucks so bad about cancer - it's always lurking and threatening to take our little boy. We never relax and this is why. The docs reading the scans can never relax or take anything lightly because it's insidius and evil. Yes, it stinks that we had to wait a week, but these are not easy things to figure out and it takes a lot of heads to make a good decision. We are so grateful for the docs that have taken Jake's situation so personally and have helped us get this figured out. And to Anisa (onc nurse)for helping us through the whole thing. I will say it again, the oncology clinic here at Omaha Children's is THE BEST! Thanks for all your support in calls, e-mails, goodies left at the door and friendship. I am sorry if I did not get all the calls or e-mails returned - there just isn't enough time in the day when you are trying hard to soak up the child that you think may not be there much longer. Our thoughts this week have gone in so many dark places and there have been so many tears, but right now there is only sunshine in this house.

Please continue your prayers for Jake to do well on Monday in surgery and for good results. They have worked so far and we can't get enough! Thanks again for everyone's concern for Jake. I will update Monday after Jake's surgery unless something changes.

Love, Kellie, Steve, Jake, Brandon and Benny :~)
p.s. Thanks, Grant Wistrom, for signing Jake's site. Jake was beyond excited to see your name and he laughed and laughed that you didn't like his Tom Brady jersey! He said maybe he should just wear it the next time he sees you! heehee!

Sunday, September 25, 2005 8:55 PM CDT

Update on Tuesday - 9/27 - This is a different update than I posted on here earlier. After talking with our onc nurse and doc this afternoon and the ENT, we have decided not to do the bone scan and chest CT tomorrow. We will just wait until things are decided on Thursday and avoid putting Jake through more than we have to. Thanks to Anisa and Dr. A for your time and guidance in making this decision today! Thanks for all the notes and prayers and to all the Caringbridge families who have included Jake on their sites!
Will update on Thursday, Kellie

New pics are up. Hi! We are doing ok. Remaining hopeful that it's just bad sinuses from radiation and have been reading a lot about this darn petrous bone and how it can harbor infection. God, please let it be an infection!!!

I guess you could say we are preparing for the worst and hoping for the best. Some of our plans changed this weekend as a result of that. We got family pictures taken today (thanks to Liz Larson for fitting us in - you are the best Liz with friendship and as a photographer!), and the bike we were going to give Jake for Christmas he got on Saturday instead. Brandon had soccer, Jake had football and we did the blood drive and bike rodeo on Saturday (thanks to all those that came out and gave blood!). We watched funny movies Saturday night (thanks, Blaine and Penny) and Dad and boys camped out in the basement Sat. night. I wanted to also, but Brandon informed me it was just a "man thing" and I was not really invited.

I am going to talk to Dr. Thedinger (Neuro ENT) on Tuesday afternoon and we plan on seeing him on Thursday morning. Wednesday all day we will be at Children's doing a chest CT and bone scan. Just in case it is tumor in his ear, we can get those out of the way. Among other things, the real bummer about all of this is we were planning on going to Florida in 3 weeks. Figures. We will continue to pray that the 5 of us are indeed on that plane as scheduled.

Thanks for all your notes of prayers and support. I can't tell you enough how much it means to have e-mails and people signing in the guestbook. Love up those kiddos!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Friday, September 23, 2005 10:01 AM CDT

Update Friday afternoon - 4:37. Just to update everyone with a little hope - even if it's false hope we will take it at this point. We have looked into this some and it seems this questionable spot is in a sinus that is really prone to infection and the ENT really feels strongly about giving the meds a week to work before we put Jake through too much. I am going to talk to him on Tuesday when he gets back into town and we have an apt. with him in his office on Thursday morning. We are going to go ahead and do a bone scan and CT of his chest on Wed to get that out of the way if they do determine it is a relapse and hopefully to give us some reassurance. We told Jake that we were going back for more tests at Children's and to see a different doc on Thursday. His response was, "Sweet! I can get more football cards!" (They give him cards as a treat after his tests). So we are doing somewhat better this afternoon and are getting ready for Brandon's soccer game tonight in this awesome weather! Thanks for the prayers! Kellie :~)

We do not have good news this morning. Nothing is certain, but it looks as if there is a good chance that the fullness they saw yesterday on Jake's MRI is tumor. I talked to both the nuerosurgeon and Jake's oncologist this morning. It is an area on the petrous ridge in his inner ear. They talked to an nueroENT this morning and he would like to see Jake on the antibiodic for a week and then do a biopsy next week on Thursday or Friday. It could still be fluid because Jake does have a lot of sinus drainage from a cold that should have been gone by now and there is so much radiation damage to that part of his head that things could just not be draining as they should. The nuerosurgeon's gut feeling is that it is tumor. Both he and our oncologist were upset this morning when I talked to them on the phone, so obviously there is a lot of worry about this area.

Jake and Brandon are at school, so they don't know anything yet. We will tell Jake there is something there and we just need to look into it more next week. We will probably do a bone scan and CT of his chest early next week to look for any other areas of concern. Then the biopsy on Thurs or Fri. Steve and I are devastated. I cannot even write what is going through our heads right now. Most of all we are worried about our family having to be seperated all the time again, Jake having to give up school and flag football and just having to put him through all the pain and sickness that would come with a relapse. We are trying hard not to get too far ahead of ourselves and we will just have faith that there is just a sinus issue there and that next week we will get good news.

There probably won't be any news this weekend. We are brokenhearted and scared to death. I don't know what else to write. Thanks for checking in and we will keep you updated.

Love, Kellie, Steve, Jake, Brandon and Ben :~)

Thursday, September 22, 2005 3:55 PM CDT

Hi! We of course love cut and dry clear results when it comes to scans, but that is not always what we get. Jake's skull and chest x-ray are clear and all of his lab work was good. The brain MRI showed an area in his mastoid bone that appears to have fluid in it. This is so close to where his original tumor was, so they are going to review it more fully this afternoon. They want the nuerosurgeon to look at it too. Hopefully we will hear from him tonight as his opinion means the most to us. Jake does have a stuffy nose that has hung around for quite some time and his eardrum on that side is cloudy and bulging some. So they went ahead and put him on an antibiodic to clear up what they are thinking is fluid from a possible ear/sinus infection. So we are in Limbo Land for now until we hear something else from the docs. We are doing ok as we are thinking that it is indeed a sinus and ear issue and not something tumor related. I will post on here as soon as we hear something more concrete. Thanks for checking in and for the prayers!

Love, Kellie :~)

Wednesday, September 7, 2005 1:24 PM CDT

Update on Friday - Happy Birthday to the greatest dad and hubby there is! Happy Birthday, Steve!

Also, wanted to ask for special prayers for the Hamilton Family (link above). They need the support of your guestbook messages and prayers as they say goodbye to their sweet little boy, Brant.

Today's journal background and color are of course in memory of our little friend Benjamin from Ohio. Blessings to his family as always. New pics are up! This is my second attempt at this journal as I had it all written and Benny came along and turned off the computer! That about sums up what he does all day - looks for anything dangerous and messy and then goes for it. He moves 100 miles a minute and just laughs and laughs the whole time. The big boys are doing great. Brandon had his ears checked since set #4 of the tubes were put in and his hearing is back to normal. He is playing soccer right now and loving school. Jake is playing flag football and although his little chemo feet won't let him run very fast, he loves the game and strategy of the whole thing. His next set of scans are coming up on the 22nd. Stomachs are already starting to churn, but we have faith that all is ok.

We have had a great couple of weeks. We went to a KC Chiefs/Seattle Seahawks preseason game in KC and had a great time. Benny stayed home with Grandpa. Brandon was crying at some points during the night because he "missed Ben" and it "wasn't right going to do something fun without him". We saw Grant Wistrom who was a Husker and is now a Seahawk and he also runs a childhood cancer foundation. We made our way down to the seats behind the Seahawks bench when people started to leave. We got to talk with him a bit and then he had one of the trainers give the boys the football gloves he was wearing! The boys eyes were as big as saucers. They didn't care that they were drenched in sweat - they put them on immediately. It was great. Thanks, Grant, for all that you do for these kids!

Brandon and Jake sometimes say the funniest things. Jake was asking me the other day how you find out your IQ. I told him there was a test to which Brandon asked, "Does it hurt?" Only the sibling of a cancer patient would assume it's some kind of medical test that hurts! Then the other day Jake came home from school telling me we needed to get to "Books Are Mobile" to get this pirate book a classmate of his had. He kept telling me the store was called, "Books Are Mobile". When he told me it was by the mall, I realized he meant "Barnes and Noble"! Heehee.

Our basement project phase 1 is finished (Phase 2 is the bar area that will be completed at a later date when the Beresh's have more money)! Carpet was laid and the furniture is in. The family room, bedroom and bathroom are all finished. The boys have their big screen up and they are in "Man Heaven" down there. We will have our first guests this weekend to break in the new room with our friends the Gilberts coming from Cedar Rapids. All the boys are going to the Husker game (they have a 9 year old son) and Benny is going to Grandad and Nana's and Missy and I are going to enjoy the fruits of being mothers to boys - unadulterated shopping that the boys want nothing to do with! We also have soccer and football games, an In the Arms of Friends Board Meeting and the Candlelighters picnic on tap for this week.

There is a blood drive coming up that Jake's school - Wheeler Elementary - and Reeder Elementary are organizing. It is in honor of Jake and the other seriously ill kids who have needed blood transfusions in this area but also now for the Hurricane victims. With a disaster of this size, the Red Cross has many regular donors displaced and unable to donate and that area needs blood now more than ever. So blood is shipped in from all over the United States. To keep the levels adequate down there and here in Omaha, please come and donate. You can make an appointment by e-mailing me. Drop-ins will also be accepted as the need is so critical right now. It is Saturday, September 24th from 9-3 at Beadle Middle School which is on 180th St. between Harrison and Q Streets.

Please keep the kids fighting so hard in your prayers: Tanner (link above), Brant (link above), Brooke (ne/brooke), Skyler (ne/skylerberry), Lizzie (ne/lizziegirl), and a new little boy that we just learned of that is from New Mexico I believe that is here at the Med Center getting a bone marrow transplant for Luekemia. (ne/cavion). He is fighting hard with graft vs. host disease (a complication from transplant) and needs your prayers.

Thanks so much for checking in on us! Love up those kiddos and be happy with who you are and where you are right at this moment. Always be thankful - we know we are for our boys, each other and the rest of our family and friends AND our health most of all.

Love, Kellie, Steve, Jake, Brandon and The Boozle (Ben)

Friday, August 19, 2005 9:55 AM CDT

Goodmorning! New pics are up! So sorry I did not get on here sooner, but Brandon's surgery for the tubes went great! He was back in school yesterday and his only complaint is that "things are too loud." He was so cute in the hospital because he was just loving the attention and living in the glory of being at Children's. After he woke up and was drinking some, we started getting him dressed and ready to go and he says, "Can I just stay here a little longer and watch a movie? It's so nice here!" We realized that the little brother that gave up every bit of attention from everyone for two years while Jake was sick really just needed to stay a little longer and soak up some of that for himself. Of course being our awesome Children's Hospital, they accomodated his wishes and let him watch some of a movie and the nurse got him more crackers and Sprite. After a while we had to insist that it was time to go as they needed our room for the next patient, but Brandon loved every minute of it and thanked us for letting him stay a little longer. They don't get much sweeter than our Brandon!

School is going great for the boys. They love their classes and their teachers and I can't believe a week has flown by already. Looks like after a hot day today, we are going to be back in the low 80's for the rest of the weekend and next week and we love this almost fall weather! We are going to hear my Uncle Benny speak at a medical conference here tonight in Omaha (where our little Benny's name came from) and Grandad and Nana are coming over to watch the boys. Then we are just working on the basement and doing football practice and enjoying the weekend. Jake LOVES having dad as his coach and Steve is doing a great job with those boys. Brandon's first soccer game is next week! We are setting up Jake's next set of scans for mid-September.

Benny is doing great and had his 15 month check this past week. All is well. He is really starting to talk and try and communicate. Besides the regular Mama, Dada, bye-bye, his next word was "thank you". It's the one thing he says regularly and it really is all encompassing and can mean a lot of things in his little vocabulary. He is just too cute and such a wonder to the boys.

Prayers for all the kids fighting, especially Brant, Skyler (ne/skylerberry), Lizzie (ne/lizziegirl) and an internet friend of ours Christi who has been fighting Neuroblastoma and now needs many prayers (www.christithomas.com). I talked to Tanner's mom yesterday and they are excited to start treatment on Monday and get things going out there.

I want to make a book recommendation. It's called "The Natural Cures 'They' Don't Want You to Know About" by Kevin Trudeau. Very interesting and informational. Just one that really makes you think and in our case make some big changes in how we eat and live. Also, Please go give blood!!! There is a big need right now! Love up those kiddos and know how blessed you are to have them in your life. Even when they make it so tough sometimes, it's still such a blessing compared to not having them at all. Thanks so, so much for checking in on us and for your concern for Brandon!

Make it a Great Week, Kellie, Steve, Jake, Brandon and Benny Boo :~)

Sunday, August 14, 2005 2:51 PM CDT

Addition on Monday - I totally forgot to put on here that Brandon is having surgery on Wednesday to put tubes back in his ears for the 4th time! His hearing is so impaired - moderate loss across the board and severe in some frequencies. It's not even an infection or fluid issue anymore, it's just that his eustacian tubes won't function and it's pulling his ear drum the opposite direction. We have given his ears a couple of months to see if they could resolve the issue on their own, but instead his hearing got worse. Poor kid really cannot hear. We were shopping the other day and I was telling him and Jake to look for things that were "organic". We were talking all about what organic was and must have said the word 500 times. Later on Brandon picks up a huge bag of chips and says, "Here's a 'giganic' food, Mom!" Menards has become Benards and he is even starting to leave the "s" off of words when he talks! He must say, "what?" 50 times a day. So prayers for my sweet boy on Wed that all goes well and at some point his eusatcian tubes will decide it's time to do their job!

New pics are up on the photo page. It has been a great two weeks as we tried to pack in as much fun as we could before the big start of school tomorrow. We went to Adventureland a week and a half ago and had a great time. We met our friends from Cedar Rapids there and we totally lucked out with the weather. It was a beautiful day - sunny and 83 degrees. Within a couple minutes of our arrival, Brandon won this huge dog that is about as tall as him - good thing that they have a place that will hold obnoxiously big stuffed animals that you win for you until you are ready to leave! We all had a great time, although Steve "adventured" into too many of the rides there and found out that that old stomach of his isn't what it used to be. The funny thing is that it was a kiddy ride that he went on with Brandon that took him over the edge - too many turns around "Lady Luck" and Steve's luck ran out! We will only be making fun of him for this for a couple decades or so!

Some of the new pics show a great day we had with the Juma kids. Summer was made for days like the one they had of pretending, looking for treasure,craft making, swimming in the backyard blow-up pool and playing the mud! They really had so much fun. We had open house at school on Thursday and both the kids ended up with great teachers and lots of buddies in their class. Brandon and Tanner will be in the same class when she gets back from California. Somehow, Brandon also got into class with his soccer team, two best buds from Kindergarten and a preschool buddy! He couldn't have designed a better group of boys! It should be a great school year and as much as I wish we had one more week, the boys are very excited for school to start!

Friday we took off for Kansas City to spend the night at the Great Wolf Lodge and we had a blast! The boys lived it up at the water park and the arcade and loved the bunk beds in the room. Even Benny slept pretty good in his pack and play which has never been his favorite sleeping spot. Ben LOVES the water and has no fear. He seeked out every part of the kiddie pool that meant water would get dumped on his head. The boys are so cute with him as they love watching him do new things - "Mom, put him on this, have him do this, bring him over here!"

Please continue prayers for Tanner as she gets ready to start radiation, Brant as his disease progresses, Lizzie (ne/lizziegirl) as they look for the next course of treatment, Skyler (ne/skylerberry) as he faces complications in stem cell, Benjamin and Haley's family as they deal with life without their angels, Brooke as she continues her fight (ne/brooke), Ethan as he continues his fight (ia/ethangrimm), Abby as she just starts hers and kids like Jake, Josh, Rachel, Ryan (yeah-so glad he is on this list now! ne/ryan), Cameron, Blake, Charlie, Jace that are in remsission. I'm sure I missed some and could not begin to list all the other brave kids who are fighting cancer that we follow and pray for.

Thanks so much for visiting us and taking the time to sign the guestbook! Have a great week and love up those kiddos! GO GIVE BLOOD!!!! There is a huge need right now!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Monday, August 1, 2005 7:33 AM CDT

Update Monday Afternoon - I hate updates like this. Prayers for Brant Hamilton and his family as I have just read his website this afternoon and his latest MRI shows so much spread of cancer in his brain and spinal cord that they are not going to do the treatment they intended. Instead, today, they are meeting with Hospice. I am so sickened and saddened once again. His link is above - please go to his site and sign their guestbook. I cannot begin to tell you how much it means to read the entries, especially on really, really bad days. We will continue to pray for Brant's miracle....

Goodmorning! New pics are up on the photo page. All is well here. The Fundraiser with Carrabba's went great! We had over 650 people there! A HUGE thank you to Carrabba's Restaurant and St. Andrew's Methodist Church. And a HUGE thank you to all the people and businesses that donated raffle items, supplies and volunteered their time to help us. Thanks to Channel 6 and Tracy Madden and Channel 7 and Julie Cornell for helping us promote the event and our cause. And of course thanks to all the people that came that night for making it possible! The food was great, the raffle was so fun and it means so much to us to have that kind of support from so many.

We had a great weekend. We regrouped a little and did laundry, cleaned up the house and had a lot of fun. Got together with friends for a movie night on Sat night and the boys played a lot with the neighbors. Steve did a lot of painting in the basement and we are hoping to put carpet down there around Aug 16th. Jake, Brandon and Ben are doing great. Jake and Brandon are so tan and getting so big. It really has been such a great summer. Such a normal summer. We are so bummed there is only 2 weeks left as the boys start school on the 15th. Ben is busy! He just loves to take apart, destroy and get into everything. His hair is so blonde and he has grown a lot this summer too.

Friday night Tanner's family came over to say goodbye. After much turmoil and hard work by Marjorie calling, e-mailing and pushing, Tanner got a consult at Loma Linda in Los Angeles to do Proton Beam Radiation on her brain and spinal cord. Hopefully that appointment will go well on Wednesday and she will start treatment next week. She will be there for a couple of months, before they head back here to Omaha and decide on the next step. Tanner won a snowcone maker from Williams Sonoma in our raffle and so we made a promise to have Snowcones in Omaha in October. Prayers for Tanner as she starts this next treatment for few side effects and great results!

Prayers too for little Skyler as he is in stem cell transplant right now. Skyler is fighting neuroblastoma and is one sick little boy right now in the hardest stage of the process. Hopefully by this time next week he will be feeling better. He is at www.caringbridge.org/ne/skylerberry. Prayers too for Lizzie from Kearney. Her latest relapse of hepatablastoma is progressing and she is starting a new chemo (www.caringbridge.org/ne/lizziegirl). Of course prayers to all these kids here in Nebraska and elsewhere that are fighting so hard. These Caringbridge pages are filled with such sick kids. I can't begin to understand it.

I am so, so thankful that Jake's fight is in remission. Working with these kids through our foundaiton is hard. It's a tough reminder all the time of the horror of Jake's treatment and how quickly we could be back there. Like I said before, this summer has been amazing. Just having Jake healthy and not having to worry is he going to get sick, is the heat too much for him, are his feet too tired to keep playing....This summer he is just a boy. Steve and I have said so many times this summer that we can't believe how good this feels to see him so strong, so healthy and so much just a kid. A couple of times he has said things that give us a look into the window to the misery he experienced while he was on treatment. Like when he told me about his teddy bear that has always slept with him that got renamed "Happy Bear" during treatment and suddenly went back to being called "Teddy" this summer. Jake said he changed the bear's name during that time because he was so sick and so sad that he thought calling him "Happy Bear would help. I'm so glad that "Teddy" is "Teddy" again and hope and pray and hope and pray that he is that forever.

Well, I better get going. The boys and I are going on a walk this morning. Thanks for checking in on us, and please continue your support of these kids by giving to the charities that support them and by giving blood. Please sign the guestbook and have a great week!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Monday, July 18, 2005 2:04 PM CDT

Update - Friday, July 22
We picked Jake up from camp and he is doing great!!! He had a great time. Thanks so much to all the staff at Camp CoHoLo for making it such a great experience for these kids! Wanted to tell you too to make sure you get your Carrabb's Fundraiser tickets! On the In the Arms of Friends website we have an updated list of our incredible raffle - our link is above to our website (www.inthearmsoffriends.org). There you can get tickets for the meal and raffle tickets you can get by e-mailing me if you can't come that night (scbkab@cox.net). Please come and help us help kids with cancer! One more thing, there will be a story on In the Arms of Friend and Ethan Grimm who is a good friend of ours that has been fighting a brain tumor for 6 year and from that treatment has now developed Luekemia. It will be on Channel 6 with Tracy Madden at 5 pm on Tuesday night. Thanks for those that have helped us so much with the fundraiser and we hope to see you all there Thursday night on the 28th!!!! Have a great weekend!

New pics are up! Hello! It has been a busy couple of weeks. Jake is at Camp CoHoLo right now (cancer camp). He was so excited to go yesterday and we were excited for him. Of course we are missing him like crazy - Brandon especially - but we know he is having a great time. I saw some pics of him on CoHoLo's website last night (they post the ones from the day on there every night) and it looked like he was having fun! We will pick him up on Wednesday morning.

We are getting geared up for our In the Arms of Friends fundraiser next week on Thursday, July 28th at 6 and 7 pm at St. Andrew's Church on 150th and Maple. Please get your tickets on our website or by calling or e-mailing me. Tell your friends and family and invite them to come along. Carrabba's is providing the food and they do such an awesome job. It is so much fun! If you can't come, but would like to still help, you can purchase raffle tickets also. We have an incredible raffle - thank you so much to everyone that has donated! We have an iPod,a week at a great condo in Florida, Husker Football tickets, signed memorialbilia, bikes, a GameBoy, gift certificates to great places like Best Buy, Paradise Cafe, Roja, Build A Bear and tons more! Over 80 great raffle items! So please come help us help families fighting childhood cancer!!! On our website we have a listing of the raffle items along with info on the night and purchasing tickets. There is a link to our website above or it is www.inthearmsoffriends.org. My e-mail is at the bottom of this page or it is scbkab@cox.net. Julie Cornell from Channel 7 did a story on Tanner's family and In the Arms of Friends last Friday night. All of us were on there and Julie Cornell did such a great job. She has been so good to us in helping us get the word out about our foundation and is such a nice person. You can see the piece that aired last Friday night on their website. theomahachannel.com. Go to Julie's Diary and it's on there.

I was out of town for a couple of days in Dallas for a Premier Designs jewelry convention. I missed the boys terribly and I am so glad to be home. I had a great time, but really I don't think I need to go anywhere again without my boys with me. Jake, Brandon and Steve had a great time last weekend at the Grant Wistrom Foundation golf tournament. Grant Wistrom's Foundation helps kids with cancer all over the country including our own Camp CoHoLo here in Nebraska. For those of you that don't know, Grant is an old Nebraska football player that now plays for the Seattle Seahawks. He's a great guy who gives so much. Tom Osborne and tons of old Husker Football players were there, and the boys got everything but their underwear signed!

The basement is in the finishing stages. Brandon, Dad and I are going to get a lot of painting done the next couple of days to keep our minds off of missing Jake. Otherwise we are just enjoying the summer. School is only a month away!

Tanner just had scans and they were great! They are preparing for radiation now to complete her treatment. Hopefully they will get into a proton beam radiation program soon. This means that they will probably be moving and we will miss them terribly. Please continue your prayers for Tanner beating this Ewing's relapse and that they are accepted for this type of radiation very soon. Tanner is at camp right now too with Jake and Josh.

Brandon is doing great and is about to lose his third tooth - it's hanging by a thread and we have been calling him snaggletooth. Benny is doing great. Just so busy and getting into everything. He's doing that conversational babbling right now and it's too darn cute.

Get those tickets for the fundraiser on the 28th and go give blood too. They are in desperate need right now. Prayers for all the CaringBridge families and kids fighting so hard. Thanks so, so much for checking up on us and love up those kiddos!

Love, Kellie, Steve, Jake, Brandon and Benny :~)``

Tuesday, July 5, 2005 10:15 AM CDT

Friday July 14:
Just wanted everyone to know that it sounds like the story that Kellie and Jake taped with the Lusk's and the Larson's will air tonite at 10:00pm on KETV Cahnnel 7. It will be part of Julie's Diary. If you miss it I believe it will be posted on Channel 7's website.

Goodmorning! New pics are up today. We had a great weekend with great friends and family. We love the 4th of July and everything about this year's was wonderful. Even the weather cooperated - a beautiful weekend.
The boys are doing great. We are done with swimming lessons and baseball and have the rest of the summer to play, play, play.

July 28th is our fundraiser for In the Arms of Friends with Carrabba's Restaurant. Get your meal and raffle tickets by e-mailing me (link below). Need not be present to win for the raffle.

Enjoy the new pics and thanks so much for checking in on us! Will update more later. Have a great week!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Wednesday, June 29, 2005 12:52 AM CDT

Hi! New pics on the photo page. Thanks to everyone for checking in on us. Thanks to those that sign the guestbook and say hello. As always we appreciate everyone's support! We will need that support coming up July 28th for our In the Arms of Friends Second Annual fundraiser with Carrabba's Restaurant. We will have dinner seatings at 6 and 7 and once again our aweomse raffle. We have so many great raffle items already like Husker Football tickets and a week in a beautiful condo in Florida - thank you so much to our amazing donors! You can get tickets on our website (link above) or you can call or e-mail me or Liz. We are shooting for 600 people this year, so we need everyone to turn out. Please invite your friends and family to come also and spread the word! If you can't make it that night, but still want to help, you can buy raffle tickets also. They are $2 each or 6 for $10. You need not be present to win. This night is so special to us and is so much fun. A great dinner spent with friends while helping out some very deserving families that are fighting Childhood Cancer.

We are doing great. We had a great night out at the Larson's lake a couple of weeks ago. Liz took the great pic of the boys that is now on the photo page as they were tubing. The Peters family came out too and we fished, went on the boat, played in the water and had a bonfire with smores. It was a great night. Thanks, Larsons!

The boys have been busy with swimming lessons and Jake's baseball season just ended. Benny is doing great - saying a couple of words now and just into EVERYTHING! Jake and Brandon just eat and eat and play and play. Jake had gained 5 pounds and grown 1 and a half centimeters in 3 months at his last check-up, so obviously his body needs it. He is trying to grow the little bit of hair he has on top out some as he wants it to look like he has a mowhawk. Well, modified mowhawk - he doesn't have any hair on the back of his head to grow out. I still just keep shaving up the side that does have some hair, and Jake is convinced it's the coolest hairdo ever. Nothing wrecking his spirit! Brandon is already fretting about Jake leaving for camp - already there has been tears about it!

Keep Haley's family in your prayers at they live their days now without their little girl. Special prayers for her sister Hanna who misses her terribly. Her funeral was absolutely heartbreaking and beautiful. It was amaing as everyone there wore casual clothes in red, white and blue just as Haley wanted. There were so many other cancer families there and it was so good to see all of them. Prayers too for Tanner's family as they are coming up on scans and are going to have to make some decisions about what is next in her treatment. Congrats to Benjamin Jones' Family who just had a baby! Welcome to baby Jeremy! Prayers please to continue for Lizzie (ne/lizziegirl), Skylar(ne/skylarberry), Ryan(ne/ryan), Brant(link above), Brooke(ne/brooke)and Ethan(ia/ethangrimm) as they are still fighting so hard. Prayers for all the kiddos in remission that they stay there forever!

Special thanks to Sgt. Peffer's restaurant for holding a fun-run and picnic fundraiser for In the Arms of Friends. There was an article in the paper about it in Monday's paper - 2nd page of the Midlands section of the Omaha World Herald. They have generously held this fundraiser for the last two years without ever being asked. They just happened to hear about our foundation and wanted to do something to help! Please go to Sgt. Peffer's as the food there is fantastic and tell them that the folks from In The Arms of Friends sent you!

We hope everyone has a wonderful 4th of July as we celebrate this awesome country we are so blessed to live in. Let us say a special prayer for all of our soldiers out there protecting and fighting for us. Love up those kiddos, give blood and choose to make it a great weekend!

Love, Kellie, Steve, Jake, Brandon and Benny Boo

Thursday, June 16, 2005 3:55 PM CDT

UPDATE ON JUNE 21ST, TUESDAY
Sweet Haley Mathis died today (link below). Prayers for her dad Kevin, mom Patti, and sister Hanna. Haley is cancer free and gone is her pain and suffering. Goodnight, Haleygirl, goodnight...

All scans are clear! Brain MRI unchanged and clear chest and skull x-rays! 6 out of 18 sets of scans down and this one marks 18 months remission! Yeah! Steve took Brandon and Jake and two of the Hoie kiddos to the pool to celebrate!

We had a great day up in the clinic as so many of our friends were up there. Congrats to the Peters family as Charlie had his scans also and they were clear too. We LOVE sharing scan day with them! Skyler and his mom, Rachel and her dad, Keshawn and his mom, Aidan and his mom and Dillon and his mom were all up there and it was great to see and talk with all of you guys! Rachel, your hair looks sooooo cute! And, Skyler, Man, you look fantastic!

Thanks to the BEST Oncology Clinic on the planet. And thanks to Ansia and Dr. Abromowitch for doing all you could to help ease the anxiety of a certain nervous, pacing Dad. Where else can you have a scan at 12:30 and then be going home by 3 with results in hand!? You guys are so great and we are so blessed!

Baseball games, swim lessons, working on the basement, trying to catch some of the College World Series going on here in Omaha (GO HUSKERS!) and celebrating the BEST DAD in the whole world this weekend! Congrats to our dear friends Blaine and Penny Wilcoxson who welcomed little Barrett Michael this past week!

Make sure the In the Arms of Friends and Carrabba's Dinner on July 28th is on your calendar! Great food and a fantastic raffle. Raffle tickets are available to all and you need NOT to be present to win. We also have inPlay on July 17th and tickets for that are available on our website. Have a great weekend - we know ours will be!

Love, Kellie, Steve, Jake, Brandon and Benny Boozle :~)

Tuesday, June 14, 2005 12:35 AM CDT

Hey, Everyone! All is going great here. This summer may go down as one of our best! It's so weird b/c it is like the first summer I have had with older kids and it's so fun! The boys were older obviously the last two years, but one summer was spent on treatment and fun is not a word I would use to describe that and last year was so much of Jake recovering still. I remember constantly weighing if he could or could not do something because of worry over how much heat and/or walking he could take. But this year we go and go and I never even think to ask Jake if he is alright. We spent yesterday at the zoo with our friends Joe and Brooke Hartnett and their triplet babies that are 8 months now. That's what Joe wanted for his birthday - a day at the zoo with his babies and his Beresh boys - too sweet! We had a great time!

Saturday was Relay for Life and it was a lot of fun. I will post pics later from that. We stayed until Midnight with a promise to the boys that next year we would try and spend the night. Well, Dad and the big boys will. Of course Benny will be my awesome excuse why I won't be able to.

Thursday is scan day for us. I don't know why, but Steve and I are especially nervous this time. It's like things are going so well, I don't want the reminder that maybe that could change. I'm sure everything is fine. It's just nervewracking. Thank God that we won't have to wait days or weeks for results. I will post results as soon as we know Thursday afternoon. His MRI isn't until 1, so it will be late afternoon before we get home. Just the MRI, chest and skull x-rays, blood work and a check up with Dr. A this time around. Prayers are of course apprecaited!

I can't believe this is so already, but Tanner is coming home TODAY!!!! Yeah! We are all going to meet her at the house to welcome her home. Her stem cells have engrafted quickly and she is coming home! HORAY, HORAY!! She still has a lot of recovery, but so far, so good. Please pray for her recovery and that this will have put her into remission forever! Urgent prayers too for sweet Haley as she desperately needs her miracle. And for all of the other great kids out there fighting. Just learned of another little boy's relapse here - it just plain sucks.

Help these kids by coming to our In the Arms of Friends Foundation Dinner provided by Carrabba's restaurant on Thursday, July 28th. Seatings will be at 6 and 7. This event was a huge success last year and we are going for BIGGER and BETTER this year! Even if you can't attend, you can buy raffle tickets (our raffle is bigger and better this year too!) that are $2 each or 6 for $10. If you would like to donate something for the raffle and advertise your business at the same time, please let me know. Please spread the word to families and friends too! I have a flyer that you can post and pass around too - just e-mail me and I will get it to you! Thanks so much to those of you that have already donated awesome raffles! We have a condo in Florida for a week and Husker football tickets just to name a few so far!

Please go give blood - the summer months are always the leanest! Thanks so much for checking in on us. Oh, if you are fired up about OPS's move to take over our schools, fight and write, write, write to the OPS board and superintendents, the legislature and govenor to tell them so!!! I hate to think of the money that will be wasted on both sides in this legal fight - money that should be going to the kids, not the lawyers!

Thanks for checking in on us and choose to make it a great week! Hug up those kiddos!
Love, Kellie, Steve, Jake, Brandon and Benny :~)

Wednesday, June 1, 2005 8:35 AM CDT

UPDATE ON THURS - Tanner has a white count! It may be small but things are starting and she is starting to feel a tiny bit better! Yeah!!!!! We are so happy!!!!!!!!!!!!! Congrats to the Lusk Family!

Update Wednesday, June 8th - Please visit our friends, Tanner (link above) as she is one sick little kiddo in the midst of the hardest time of her stem cell tranplant, and Haley (link below) as she is not feeling well and needs a lot of prayers for her miracle. Please go to their websites and offer them your support. Also, birthday wishes for our friend Brooke who just relapsed and is in the hospital right now with a fever. You can find her at www.caringbridge.org/ne/brooke. Thank you!

Goodmorning! June 1st - wow! New pics up on the photo page. All is going well here. The boys are good and we are just busy working on the basement and with the rest of the house, the foundation and work. Our first couple days of summer vacation we have been to the book store, on walks and to the park. We did a lemonade stand on Friday afternoon, raising money for In the Arms of Friends of course. Yesterday we went on a walk and ended up running relay races! I haven't skipped, galloped and run grapevine in so long - the boys will make me skinny yet! It was so fun. Of course I rarely won a race b/c I would have to detour off the course to run and get Benny. He's a goer, that little boy. Busy, busy. No drawer, closet, cord, neatly folded laundry pile or paper is safe! But how cute it is when he grabs the phone and then puts it up to his ear and "talks". I think those things are even cuter this time around b/c it's sprinkled with the memories of when the boys did it too. Oh, got to grab Ben he's tearing up a catalog....oh what does it matter, it's ruined now. Maybe it will keep him busy long enough for me to get this written.

The boys are doing well and just finishing up with the antibiodics from their sinus infections. Jake and I's cough is still hanging around. Of course with Jake that makes us crazy. Good thing we all this sinus infection and not just Jake. Everything makes us nervous. Sometimes the worry is exhausting. You worry about your children all the time anyway, then throw in the fact that they are in a tenuous state of remission from a deadly disease - it's enough to make you crazy at times.

I read on another child's site where someone had written that it's like you being in your house looking out the window at your child sitting in the middle of the street. They can't get up and you can't go out to get them. In the distance, you can hear the approach of a car, but you don't know if it will come down your street or how far away it is. You sit by the window and watch, waiting and hoping that your child will be ok. You never feel safe to leave the window. Sometimes you might feel secure enough to step back a bit from it and go sit on the couch, but then the sound of a car in the distance makes you jump back to the window, hoping and praying once again that it does not come down your street; that it will not hit your child. So Jake is always in the street and we are always at the window. Like I said, exhausting. But nothing like the exhuastion of watching your child suffer through treatment or learning to live life without them, so we will stand by that window and just keep hoping and praying.

Just read an article about Childhood Cancer called, "Unseen and Underfought" from Economist.com. They say that the incidence of childhood cancer has increased by a third between 1975 and 2001. That's a huge increase that significantly surpasses the increases in adult cancers. And unlike adult cancers, little money is being spent to find out how to treat it better and the cause remains a huge mystery. Environmental causes are suspected, but nothing has been pinpointed. One twentieth of the money spent at the National Cancer Institute is spent on pediatric cancers! Ouch! Even more depressing, treatments do not seem to be advancing as they have done with adult cancers. The biggest problem is with teenagers - their rates of survival from the same disease of their younger counterparts is typically much lower.
Frustrating.

So for our friends still fighting, please, please keep them in your prayers. For sweet Tanner in transplant (link above). She had a big scare last night with a coma-like state, but pulled out of it. They think it was just from too much medication and she is more alert today. She gets her cells back today and she is feeling soooo miserable. Her counts are on the way down, so she is going to get sicker before it gets better. Please visit their site and sign their guestbook to offer your support. Tanner will get through this, it is just a very dark road to get there. Please pray for Haley - she is back from her treatments in Mexico and just had bad news with from her latest scans(link below). Prayers for Brooke as more cancer has been found in her bone marrow and she was immediately admitted for chemo after her bone marrow aspiration(ne/brooke). And for Brant (link above) who just had an MRI. Prayers for all the kids out there fighting...there are way too many.

Our In the Arms of Friends Fundraiser with Carrabba's Restaurant is scheduled for Thursday, July 28th. We are collecting raffle items right now, so please let us know if you would like to donate and advertise your business at the same time! We also are lining up people/groups to help us with raffle ticket sales. Please put July 28th on your calendar as it will be a fun evening. This was a great event last year and so many people have been asking us when it's coming, so don't miss out! The inPlay event has been rescheduled for July 17th due to construction delays. Tickets are available on our site (link above).

This Saturday, June 4th, we will be on the Children's Miracle Network Telethon around noon on Channel 6. It may be sometime after 12 as things aren't always exact on live TV. Please give to the telethon as we are ever so thankful for our awesome Children's Hospital here in Omaha! Blood is really low right now - the summer months are always the hardest, so make an appointment to give blood soon.

Thank you so much for checking in on us. We appreciate so much everyone's continued support of our Jake and of all the other kiddos fighting cancer out there through these websites and our foundation. We are blessed with some of the best friends and family in the world and we are ever so grateful. Love up those kiddos and chose to make it a great week!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Tuesday, May 24, 2005 2:55 PM CDT

Update on Monday - Prayers please for Tanner as she is feeling pretty bad right now in transplant. She is done with chemo and has a rough couple of weeks ahead of her.

Hello, Everyone and thanks for stopping in! It has been an emotional week for me. Not because of anything happening here personally, just so fed up with these relapses and fed up with the whole cancer thing in general. I have been so angry this past week. With Brooke Brion relapsing it seems so many kids we personally know have relapsed and it makes me wonder where is this great percentage of kids with cancer that do well? Maybe we just happen to know a lot that have had relapses or maybe it's just hard to remember about the kids doing well - whatever it is I had just had it last week. Then I get on another childhood cancer foundation's website that is in memory of a little girl that died of AML and they have on there all these statistics of how little funding goes to childhood cancer, how little research is being done specifically for pediatric cancers and how much more is being spent for things like juvenille diabetes and pediatric AIDS. Don't get me wrong, I think these diseases should get funding too, but more kids have cancer and so many more die from cancer and childhood cancers have no known cause or way to prevent them and the incidence of all cancers just keeps rising and here we sit and let it happen. It's not the fault of the diabetes or AIDS foundations - they are smart - they market their cause and get big names involved and get lots of money pouring in. Childhood cacer research foundations just have not been good at doing that. Why? I don't know, but I just needed a couple of days to be really, really mad about it. It is our goal with our foundation, In the Arms of Friends, to have a walk for Childhood Cancer Research in 2006 and it will happen. We give to that cause already, but we want to give something big to it in the future. Hopefully someday we will need less support for kids and parents going through treatment and for those that lose their child to the disease because the treatment will just plain work without being so horrific, dangerous and life-altering for these kids. I'm trying to channel the anger - humming helps, so I'll break here to hum a little and get off my soapbox and then update on the rest of our world.

Ok, Jake is doing great and so are my other two little boys. We did have to put both Brandon and Jake on an antibiodic because it seems they have sinus infections. Nothing major, just all of a sudden their coughs and runny noses started again. Jake's hearing test last week went great! Not to say he won't lose his hearing in that radiated ear someday, it's just great that it hasn't happened yet. The more years we can get with him with all his hearing the better for him in the long run. His ear even looked good inside there and she didn't have to dig stuff out! She thought it seemed like some of his glands might be working in there again and helping with keeping his ear clean. Poor Brandon and his ears on the other hand - his tubes (set #3) have fallen out again. She pulled more stuff out of his ears than I thought humanly possible. His canals are just sooo tiny, no wax can come out. His ear drums have fluid behind them and are not working great, which I can tell at home as he seems to not be hearing all that well. We are going to give him until July 1st and see if he can clear the fluid out himself. If not, it looks like tubes will be placed in again. He might just be one of those people that have to always have tubes. He hasn't had an actual infection in so long, but this fluid is just so damaging to his hearing now and in the long run. We will do the permanent ones next time. Benny had some fluid behind one of his ears, but overall he looked good.

The boys'last day of school is this Thursday and they are excited! So are Benny and I! No more having to get Benny up and out the door - he can nap when he wants to - well, until the boys are loud and wake him up. His 1 year apt. went well - he is up to 21 lbs. We are so looking forward to the summer and I can't wait to have the boys all to myself. Don't get me wrong, we have our moments of ugliness, but I just appreciate everyday we have together and healthy. So many don't have that and we used to not, so it just makes it that much sweeter to really have an appreciation for it.

Tanner is in for stem cell!!! We are so happy it has worked out and she has made it this far! We know you will do well, Tanner and family! We had a cook out with them and some of their great neighbors on Sunday and it was so fun. Please pray for the Lusks and visit them on their website as this is not an easy road for them the next couple of months. Tanner will be very sick during the stem cell rescue, but she will make it and we have faith that it will help ensure her cure. Tanner will start turning around those statistics for Ewing's Sarcoma relapses - she already has so far! Prayers too for our many friends still fighting or dealing with life threatening side effects including Haley (link below), Lizzie (ne/lizziegirl), Ryan (ne/ryan), Brooke (ne/brooke), Ethan (ia/ethangrimm), Skyler (ne/skylerberry), Blake (link below), Delaney (oh/teamdelaney) and Brant (link above). Prayers too for all of our friends in remission including our own sweet little boy - please, please dear God don't let anymore of these kids relapse and let them stay right there in remission forever!!! Special prayers for those families who have lost their little ones to cancer

There has been a date change on our inPlay event due to construction delays on the building. Our new date for inPlay is Sunday, July 17th. Go to our website for ticket information.

Put on your calendars too our annual dinner fundraiser with Carrabba's Restaurant on Thursday, July 28th!!!!! This was such a huge success last year and so many have asked us to do it again because it was so much fun! So we are! It will be July 28th at St. Andrew's Methodist Church once again and our raffle will be even better than last year's! Please let us know if you would like to donate a raffle item and or you or your organization would like to help us sell tickets for the raffle. Any help is so appreciated!

Thanks again for checking in and please remember the Children's Hospital Telethon that is June 3rd-5th. We will be on Saturday June 4th around 12 noon for our interview. Jake has scans coming up the first couple of weeks in June also.

Have a great week! Love up those kiddos and GIVE BLOOD!

Love, Kellie, Steve, Jake, Brandon and Benjamin :~)

Tuesday, May 17, 2005 10:48 AM CDT

Update on Thursday - Please say prayers for our friends the Brions as their little girl, Brooke,now has a tumor in her head. Brooke was in remission and done with treatment. www.caringbridge.org/ne/brooke

Goodmorning! Hope it is a good day for all of you! Looks like things are warming up here in good old Omaha! As you can see from the pics on the photo page, it was pretty cold this weekend for the soccer and baseball games on Saturday. We had a party for Ben on Friday night with the family and it was great! He LOVED the cake and entertained all of us for a good 20 minutes or so as he tore it all apart and ate to his heart's content. Jake and Brandon delighted in the mess he was making. It was a fun night, and Benny is loving all his new toys and we are loving putting him in all of his new clothes.

We've had a good week and have been busy with soccer and baseball. Brandon had his last soccer game on Saturday. What a great (and cold) season it has been! Brandon will do a couple of soccer camps this summer that he did last summer that are so fun. Jake had baseball games and his team is on a roll and so is he! They have won their last three games and Jake has had a couple of doubles and a game winning RBI! He is the ultimate cheerleader out there and he sure does like the winning they have been doing lately. Everytime he gets a hit, it's such a celebration for Steve and I that goes way beyond that baseball diamond.

The boys only have 7 more days of school left! I am soooo looking forward to having them home all day and we have started making big plans for the summer! Jake has done so well this last couple months of school. It has been a year of hard work for him, getting used to going everyday again and getting caught up with his class. He is a whiz at math and now even in reading he is caught up! We were going to get a tutor for him this summer, but I think we are just going to give him the summer off. He has worked so hard. Much to his demise, he will still have to work with Teacher Mom. Brandon has had such a great school year and he is already reading and writing so well. He just loves school and learning. I want to say a huge thank you to Wheeler Elementary here in Millard Public Schools and to Mr. Defreece the principal there. Thanks to Jake and Brandon's teachers and tutors the past 3 years for all your hard work with them: Mrs. Parker, Mrs. Pratt, Mrs. Sobczak, Mrs. Keber, Mrs. Masching and Mrs. Champion. You guys are the BEST!!! A huge thank you to all the staff up there at Wheeler who have helped our whole family through all of this and have taken special interest in making sure we are all ok. Go Wheeler Wildcats!

Saturday, June 4th, we will be on the Children's Miracle Network Telethon here locally at noon. Sometimes things run behind in live TVland, so if you don't see us then, wait a bit and we will be on eventually. I remember last year being on and Ben was only 3 weeks old. Just where a gal who just gave birth to her third child wants to be - ON TV! Anything for Children's Hospital, right? Please give to the telethon - there isn't a great place than Children's!

And of course please keep up your prayers for all the little warriors out there who continue their battle. Tanner is getting ready for her stem cell transplant as her tumors responded well from the gamma knife! Josh Larson's scans were clear and we thank God everyday for that little miracle! I have sites linked on here and other sites listed in my last journal entry of kiddos you can pray for and visit.

If you want to help, remember you can help us help cancer kids and their families with the inPlay fundraiser for In the Arms of Friends that is coming up June 5th. Tickets are only $20 and you get all day free gaming with no need for tokens or quarters, a $20 giftcard to use on your next visit and a good feeling because $10 of your ticket goes to helping In the Arms of Friends! You can get tickets by e-mailing (e-mail below) or calling me or on our website (link above). We have a great raffle and clowns planned for the day and lots and lots of fun!!!! We hope you can join us!

I think that's it! Please give blood - supplies are running low as the summer months are always the leanest. Love up those kiddos and thanks so much for checking up on our family!

Love, Kellie, Steve, Jake, Brandon and Benny Boo :~)

Monday, May 16, 2005 5:03 PM CDT

Will update later. New pics on the photo page!

Tuesday, May 10, 2005 2:28 PM CDT

Hello! Thanks for stopping in and checking on us. We are all doing good and are getting excited for this week as Ben turns 1!!! I can't believe it - the year has flown by. He is the best baby - never fusses. He is always happy, always smiling. The boys taught him how to "give 5" this morning and they all think it is great fun when he does it and then gives himself a hand. He gets so excited when he sees one of the boys coming that he can flip himself right out of your arms. He says "DaDa" and can wave and blow kisses and now give 5. He is walking and even tries to run, which is a hoot because his little feet get to going sideways and then he just falls. We are having a party for him with the family on Friday night.

We all had a spring cold this past week with the coughing and Jake had to do his breathing treatments. I swear his asthma (which is very mild and we only see evidence of when he has a cold) is worse now that he is off chemo. Mother's Day was great as we went out for breakfast with our families and then Jake had a baseball game in the afternoon. Brandon's soccer is winding down, but Jake is about halfway through baseball season. School gets out on the 26th. The boys are going to the ENT on the 20th of this month to get their ears checked. Brandon's hearing seems down to me and I swear I can see his little blue ear tube sitting in his ear canal. Jake needs his hearing checked again and to have that ear that was radiated cleaned out. The wax that builds up in there looks like something from another planet. When we get a piece out of there it is always something that has to be passed around for the boys to say, "oh gross!" Scans will be coming up in June again.

This is a typical conversation with Jake that we had this morning. Jake and I were rocking in Ben's rocker together (all the boys were taking turns rocking with mom since they said it was unfair that I only did that with Ben). I told Jake as we were rocking that we used to spend hours rocking when he was a baby. "Yeah," he said, "that was when we had all the time in the world." "Very true," I said. He says, "Then You-Know-Who came along and ruined that whole gig I had going." Oh, Jacob, you are too funny!

Liz Larson (Josh's mom) and Marjorie Lusk (Tanner's Mom) and I went out last night for a little Cancer Mom's Night Out. It was great just hashing out the last two years and laughing together. Tanner has been going to school here and there - it is so great seeing her sweet little face coming out of that school. She is truely a miracle and she is getting very close to starting her stem cell tranplant. They go on Wednesday to get the plan and the exact dates. Prayers for Tanner (link above) and her family as they prepare for this next step. Prayers too for Josh Larson (link above)who is having scans today. And prayers for Haley (link below), Ryan(www.caringbridge.org/ne/ryan), Brant (link above), Delaney (www.caringbridge.org/oh/teamdelaney), Lizzie (www.caringbridge.org/ne/lizziegirl), Blake (link below), and Skyler (www.caringbridge.org/ne/skylerberry)as they continue their fight. Please take the time to visit their pages and sign their guestbook. It really does help knowing people are rooting for you child and your family.

In the Arms of Friends just got a nice donation from The Original New Friends of Omaha group - thank you ladies! We also have inPlay tickets for June 5th on sale on our website (link above). This is your exclusive look into this great entertainment complex. Your $20 ticket gets you all day free gaming (no tokens or money to mess with), a $20 giftcard to use on your next visit and a $10 donation to In the Arms of Friends! We will have clowns there that day and it will be lots of fun! Please use the website or e-mail me (see below) for your tickets to help support kids fighting cancer!

Have a great week and thanks again for checking in on us. Loading new pics right now! Give blood and hug up those kiddos!

Love, Kellie, Steve, Jake, Brandon, and Birthday Boy Ben :~)

Friday, April 22, 2005 9:47 AM CDT

Goodmorning! New pictures on the photo page!!! All is well here! The garage sale went great! We raised about $6000 for In the Arms of Friends, so it was a big success! Even with the rain, we had a great crowd all day. Thank you so, so much to all the people that donated their items for our sale! Thanks too to all the great people that helped all week in getting the sale organized and ready. And of course thank you to everyone that came and supported us with your shopping. We will put the money to good use in helping kids with cancer!

The garage sale made the week a little crazy, but we got through it and are busy putting our house back together. Jake had his first baseball game on Saturday afternoon and it was so awesome watching him out there. I wish I had video of him last summer playing baseball compared to this year. He is a totally different kid. His favortie position is catcher, I think mainly because he loves being up by all the action. He is so into being on a team and playing the game. He loves every minute of it and we love watching it. He and Brandon both have games on Saturday. I am looking foward to just hanging out and watching the boys play, play, play!

On Tuesday we had a special treat when my Uncle Benny Hochman and his wife Marie came into town. He is the guy that my little Benny is named after. I have told the story before, but my Grandad Townley (my Ben's middle name)helped Benny after he was freed from Auswitch Prison camp in WWII. Benny was imprisoned by the Nazi's and lost his whole family at Auswitch. He was 15 at the beginning of his nightmare and his brother was killed at his feet. His stories of survival from the prison camp are horrific. After the war, my Grandad sent for Benny and arranged for him to come to Lebanon, Nebraska to live with our family. My mom was 3 at the time and Benny loves to tell the story of how she was so excited because she was getting a brother, but then cried and cried when he got of the train because she was expecting a little brother, not a 22 year old man. Benny speaks all over telling his story of survival and his love for this country. He lives in Sidney, Nebraska which is about 6 hours away, so we were so glad he came to visit. He tried to teach me the Polish nursery rhyme he was singing with little Ben, but now of course I can't remember it. We had a great time and Jake liked talking about WWII with him.

So school is winding down and spring is here. It's such a great season - the green grass, the light green leaves from newly budded trees, the flowers, the warm air, the soaking rains. Ben is walking all over and getting into everything he can. He will be 1 on May 12th and it's hard to imagine life without him, but at the same time the year has gone so quickly. The work on our basement continues slowly but surely.

Please continue your prayers for all of our little friends fighting cancer. Don't forget In the Arms of Friends fundraiser with In Play Entertainment Complex coming up June 5th. You can get your ticket from our website (link above) or by e-mailing me. A $20 ticket gets you all day free gaming - no tokens needed! You also get a $20 gift card to use on your next visit and a $10 tax deductible donation to In the Arms of Friends.

Please give blood and have a great weekend. Thank you so, so much for checking in on us. Your prayers and notes in the guestbook mean so much to us!

Love, Kellie, Steve, Jake, Brandon and Benny Boo :~)

Thursday, April 14, 2005 12:17 AM CDT

Goodmorning! Oh, Man, I mean afternoon! Just wanted to get on quick and tell you to listen to KAT 103 for their Radioathon for Children's Hospital that started today and runs tomorrow. We heard our "story of hope" this morning on the way to school and the boys and I pulled over to listen to it. I was crying of course - so many painful memories to listen to. It's different when you are saying it vs. when you are listening to it - hard to explain. Anyway, Jake says, "Oh boy, here come the waterworks, Mom is crying!" Brandon as sweet as can be says, "Are you crying, Mom?" Yes I told him because that was just a really sad time in our lives when Jakie was so sick. And he says as sympathetic and sweet as can be, "Because you thought he was going to die, Mom?" "Yes," I told him, "and because I missed you so much and you always had to be with other people and I just wanted to be home with you." "Oh, I love you, Mom," he said and Jake did too and they got out and ran into school. I'm just one lucky mom. Brandon also made me a little sign today b/c I was running around like crazy trying to do garage sale stuff and get them to school and his sign said, "Go Mom!" He said I could look at it today when I get so busy and think I can't do it all. The thoughtfullness in that kid. I have his little sign on the inside of my jean jacket today; close to my heart and helping me along. So I am just so blessed and our family is to be putting on a garage sale for cancer kids and running around like crazy getting kids to school and their games and not in Children's Hospital all the time. Please give to the Radioathon. Children's is such an incredible place and there are so many kiddos in there so sick and so many families suffering like you can only imagine. We will be on tomorrow at 9 for our live interview.

So many prayers as so many of our close friends need them right now. For a little boy who is a good friend that just found out that the chemo he has been taking to fight his cancer has now caused luekemia. Prayers for his family as they figure out what to do for their child in facing two cancers. This is always a fear we have and it hurts so much to see it happen to a family we love. Prayers for the Jones family as they go through these first days without their little boy. Prayers for Ryan, Brant, Haley, Lizzie, Skyler as they fight so hard and need their miracles. Special prayers for Brant Hamilton as he had scans yesterday and should hear results today. And for Tanner as she had Gamma Knife yesterday that went well - yeah!!! One step closer for a cure for Tanner - she is going to do it! Prayers for all the kiddos in remission that they stay there forever and are able to deal with all the side-effects they face.

Help us help them and please come to our garage sale this Saturday at our house (address below)from 9-3. You can make a donation to Camp CoHoLo with our change drive and you can make any addtional donations to In the Arms of Friends. We have so much work to do, help us make it happen. Remember the inPlay event coming up also. You can go to our website above to get more info and tickets for that.

Thanks so much for checking in on us. Give blood, give money, give time and give hugs. A special hello to all of our Caringbridge families! Have a great weekend!

Love, Kellie, Steve, Jake, Brandon and Benny Boo :~)

Tuesday, April 5, 2005 10:51 AM CDT

UPDATE WED, APRIL 13TH
Be listening to KAT 103 on Friday morning at 9:00 am as all of us will be on the radio for an interview for their radioathon for Children's Hospital. The commercials are running for it now and yes, that's my voice on there. The garage is filling up, so come Saturday ready to shop. We have incredible stuff!

Update Thursday, April 7th. With very sad hearts we write that Benjamin Jones died this morning (link above). Such a sweet little boy that will be missed by his family and for those of us that loved him from afar.

Goodmorning! All is good here and I have so very little to report thankfully! Brandon's soccer games have started and he loves being out there, tearing up and down that field. He is so determined and focused out there. Jake has started baseball pracice and their first game is coming up in a couple of weeks. He is so excited to play! He's on a team where most of the kids and the coach knows him, so it's nice for him just to be able to get on the field and play without having to explain his hair to the kids. Out there in his baseball cap, you'd never even know anything was wrong with him. It's so cool to see. You might think he runs funny (he still has his chemo legs), but otherwise he just looks like any other 8 year old. Benny is walking and getting into everything. The boys love playing with him and have even started teasing him a little - oh broterly love! Steve continues to work on our basement and hasn't put any more nails through parts of his body!

Don't forget the In the Arms of Friends Garage Sale which is coming up on April 16th from 9-3. It's going to be a huge, awesome sale!!! Of cours all the money goes to helping kids with cancer. The sale is here at the Beresh household and spilling into our neighbors too. Our address is listed below and we live in the Mission Park Neighborhood off of 168th and Q.

Also, don't forget to get your tickets now to the Before Grand Opening Exclusive look at Omaha's newest and biggest entertainment complex called In Play. Your $20 ticket gets you all day free gaming (no need to mess with tokens and cards that day - play to your heart's content! No need to keep asking mom or dad for more money or tokens!!!) and you even get a $20 gift card to use after the Grand Opening! So essentially a free way to support In the Arms of Friends. Your ticket can be used any day from June 2nd to June 15th. Sunday, June 5th is the In The Arms of Friends official day! We will have a great raffle and it will be tons of fun! You can call or e-mail me to get tickets or you can go to our website (Arms of Friends link above) and get your tickets on there!

Please continue your prayers for all the kiddos out there fighting cancer. As you read these sites, you may wonder what you can do to help these kids, you can help support In the Arms of Friends and you can give blood. In the Arms of Friends not only helps kids treated here in the Omaha area, but also gives money for Childhood Cancer Research that helps kids nationwide.

Enoy the new pics on the photo page and thanks so, so much for checking in on us!

Love, Kellie, Steve, Jake, Brandon, and Benny :~)

Monday, March 28, 2005 10:40 AM CST

Goodmorning! All is good here and spring is showing up today. It is in the 70's here! Very nice. We had a good Easter weekend. We went out to eat with our family and then went over to Grandpa Gary's for an Easter Egg hunt. Jake had a great time at the Husker Football Experience. He was so excited to go and just loved every minute of it. They set it up so the kids could do the tunnel walk just like the players do. They had the music, Tunnel Vision and even the coach leading them out onto the field. Jake said it was great and called it "a once in a lifetime opportunity." Brandon had a great time at his birthday party and got to go with mom taking Benny to the doctor Sat. morning as he has an ear infection. He didn't sleep hardly at all Friday night and woke up with a fever, so we knew something was up. He is feeling great now and is busy working on those walking skills. He loved the Easter Egg hunt the Easter bunny left for the boys on Sunday morning. We always have a clue-hunt with each clue having a little rhyme in it for the boys to figure out where the next egg is hidden. The Easter Bunny has to get a little smarter each year to come up with some rhymes that will stump the boys. We also dyed eggs Easter morning and it was the first year the boys figured out if they dipped the egg in just one color instead of all of them, we may end up with a baseket of colorful eggs instead of a basket of brown eggs! A great weekend.

Getting ready for the In the Arms of Friends Garage Sale which is here at our house on April 16th from 9-3. We especially would like donations of kids toys and clothes, Little Tykes items, electronic equipment and furniture. Please bring your items already marked (we can help you with the big items if you don't know how to price those) and donations will be accepted starting Monday the 11th. Please come that day as we will have a great sale (we had the best items last year) with enough stuff to last all day. There will also be Arms of friends t-shirts, sweatshirts and bags for sale, along with a refreshment stand. This really is a sale you don't want to miss!!!

Keep the In Play fundraiser in mind too. Go to our link above to go to our website to get your tickets for this awesome event! Don't miss the opportunity to help out Arms of Friends while getting an exclusive look at Omaha's newest family entertainment complex!

Ok, enough advertising. Please continue your prayers for all of our little friends. Please have prayers too for all cancer fighters out there - kids and adults. Our health is the greatest gift, so if you have yours, don't waste your days worrying about other things. LIVEstrong!

Enjoy the new pics and thanks for checking in on us!

Love, Kellie, Steve, Jake, Brandon and Ben Diesel :~)

Wednesday, March 23, 2005 7:35 AM CST

Goodmorning! The rest of spring break last week was great. I loved having all my boys home and we had a great time. Wednesday we went to the zoo with Kathy, Brianna and Justin Juma. It was the most perfect day - sunny, just warm enough to not wear a jacket, no wind and the zoo was not busy. Does Omaha have an incredible zoo or what? We had a great time. Ben was so good and he just loved being outside and being around all the kids.

This weekend, Jake is going down to Lincoln for the Nebraska Cornhusker Football Experience. He gets to go on the field with Husker coaches and players and run football drills for the day. Needless to say he is soooooooo excited! Brandon started soccer practice last week and he has a birthday party to go to on Saturday. Both of them seem to be over their colds, but of course Ben has it now. Speaking of Ben, the kid has just a couple things on his agenda - get into everything and work on that walking! He can take 10-15 steps on his own and in the last couple of days has mastered going from floor to standing without holding onto anything. He is ready to go. The kid needs a haircut again too. His hair is still so light and he still has his mommy's green eyes (yeah, at least one thing on one of the kids looks like I had a hand in their making!)

An In the Arms of Friends Update: We have so much coming up! The BIG garage sale is April 16th here at the Beresh Household. This sale is going to be HUGE! We are so excited! Plus you can get your In Play tickets on our website (link above). We got some exciting news with that too - you can buy a ticket that benefits In the Arms of Friends and use it any day in that two weeks that they are having their 14 days of giving! So even though June 5th is our day there, you can take advantage of this great deal anytime in that two weeks! Remember you buy a ticket for $20 for unlimited gaming all day and then you get a $20 gift certificate to use again when the place is officially open! Essentially a free deal for you to support In the Arms of Friends. What a neat gift these tickets would make too!

Please continue your prayers for the many kiddos out there that are fighting this horrible battle with cancer. It's amazing how some of these families have been fighting for years - can you imagine - years of the most toxic chemo and radiation with tons of surgeries and pokes on these tiny little bodies?! We have to keep working to find a cure and help these kids through this horrors of treatment. Prayers especially for: Tanner as they work towards a gamma knife procedure for the tumors in her brain and get her ready for stem cell transplant, Lizzie that her good AFP continues, Brant as we pray for his miracle, Benjamin as his disease breaks down his little body, Haley as she fights for her miracle, Ryan as he waits for scan results and for all the kids out there that are in remission. Please, please, dear God, let them stay there!

I was thinking the other day the farther we get into remission, the more unbelievable what we went through to get here seems. When you are in it, the pokes, tests, nausea, low counts, always being handed off to other people (for Brandon)and never being together,the pain, pain, pain become just part of a normal day. You hate every minute of it, but it is just what you come to accept that you have to do. Now I wonder sometimes how we did it. I can't believe my children had to go through it. And Jake did so well. His story was not as bad as what some of these kids go through. And so far it has a happy ending. Prayers please for the parents that lose their little sweeties after having fought so hard. Nothing more horrible than losing your child and having to see them suffer on their way to heaven. See what I mean at www.caringbridge.org/ne/camer. Go into the guestbook and scroll down to where mom wrote her little boy a letter. I don't want to depress everybody, but someimes it's good to remind ourselves how good we have it and how thankful we should be for our healthy children. Sometimes it's good to remember the pain that others are in so we can really appreciate our own lives and put our own problems in perspective.

Thanks for checking on us and thanks to our CaringBridge family! The boys and I were out to lunch the other day before the zoo and I ran into an old friend. Actually she is the mom of one of one of my high school friends. I was taken aback when she said that she reads Jake's site religiously. Wow! Amazing how awesome people can be. How many times we don't even know the cheerleaders we have. How many times we don't even realize the support that is out there for all of us, whatever our situation is. Hello to Rea and thanks for making us part of your day!

Go give blood - there are so many people in cancer treatment that have to have it to get through the day. Call 271-2588 or 1-800 Give Life to make an appointment. Only 5 percent the elligible population give blood - let's up that percentage!

Have a great week and thanks again for your prayers for our family. Love up those kiddos! Happy Easter!

Love, Kellie, Steve, Jake, Brandon and Benny Boo :~)

Tuesday, March 15, 2005 3:07 PM CST

Hey, Everyone! Just wanted to post on here that this weekend at St. Wenceslaus Catholic Church on 150th and Pacific, In the Arms of Friends will have a booth at their great craft show! We will have our bracelets, awesome new t-shirts and bags plus information about the In Play Fundraiser coming up in June! You can now order your tickets online at our website www.inthearmsoffriends.org (link above) for the In Play event that is June 5th. There is info about the In Play Entertainment Complex on our website also. So we hope to see you this Saturday at our booth at St. Wenceslaus 9-4.

We are all doing great! I am loving spring break and having all my boys home! We had lunch with Dad yesterday and did a little shopping. Then we braved it at the movie in the afternoon with Ben with an understanding from the boys that we may have to leave if Ben freaked out. But the movie started, I gave Ben a bottle and he was out like a light! We saw Robots and it was very cute! So it was a great day! We may head to the zoo tomorrow. The boys seem like they are getting yet another cold, but such is the way. Hopefully this spring break will clear out all the winter cold germs up at school.

Thanks for checking in on us and go give some blood! I will be there doing just that on Saturday morning at the center on 132nd and Dodge - come up and meet me and give a little of what keeps all these cancer kids alive!

Choose to make it a great day!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Thursday, March 10, 2005 5:04 PM CST

Won't leave you in suspense....ALL CLEAR! Jake's brain MRI, skull and chest x-ray were all clear!!!!!! 15 months remission!!!!! The chest x-ray noted the nodule that was seen on the previous one was gone and the new bone that we have felt growing in Jake's head finally was thick enough to show up on the skull x-ray and be noted! His heart echo and ekg are all normal also. So we picked up Brandon from school and came home and had a normal afternoon. Thank God!

This week we did have a little excitement when Steve shot a nail into his finger with the nail gun! We went to the new Lakeside Hospital ER with the nail sticking proudly out of his hand and Steve got all shot up with pain killers, tetnus and antibiodic. We went home with one less object than we came with. It's on the mend and Steve has even braved using the nail gun since then. Of course the new rule is no other family members can be in the same room while it is in use.

We are a happy little family tonight, but as always, there is an amount of survivor's guilt that creeps in when we get good news while so many other families are in so much pain as they fight for the lives of their children still. Prayers tonight for so many:the family we met today in the clinic whose two year old little sweetie just relapsed, Tanner who had scans this afternoon, Haley who continues her fight at St. Jude and has had a terrible week of bad news (www.caringbridge.org/ne/haleygirl), Brant as he continues his battle, Benjamin as he experiences progression of his symptoms, Ryan as he fights in NY and the list goes on and on of kids that are fighting this disease that kills so many children. Where are all the fundraisers for childhood cancer research? Why isn't more money being spent on research to combat the number one disease killer of children? I could "why" all day! But at the same time, we have had so many successes this past week - Josh's clear scans, Lizzie's good and stable AFP level, Skyler's good response from MIBG, Billy achieving one year out from his bone marrow transplant, Cameron Miller doing so well, Charlie's clear scans, Jake's... I hope to report more good news for Tanner with today's scans also. Prayers and a big thank you too to all of our Caringbridge friends we have that we will only know from a guestbook signature or from the checks of your own child's website. Truely an amazing network of people with sick children who take time out to root for others and of people who just log on to follow a child's story, while offering their prayers and an encourging word. Guestbook messages mean so much. Keep them coming for all these kiddos!

So that's the latest and all is good here. Such a relief felt tonight - one scan closer to Jake being cured! He looks so good - everyday is just a realization as to how low he was and how strong he has become! We relish and celebrate it all the time.

Love up your kiddos, give blood and choose to have a great weekend!

Love, Kellie, Steve, Jake, Brandon and Ben Diesel :~)

Friday, March 4, 2005 3:14 PM CST

Hey, Everyone! New pics should be up soon! All is well here. We've all passed around a cold this week and Benny has it now. Jake doesn't, so go figure that the boy who is supposed to have the weakest immune system of all of us is the only one that hasn't gotten the cold! It is beautiful here today! Sixty degree weather feels great! I noticed that we have tulips popping up too, so spring is making it's approach - I love the change of seasons! No real news, just please keep us in your prayers on Thursday as Jake has his regular scans that day. He will do an MRI of the brain, chest and skull x-ray, an ekg and echo of his heart, blood counts and see the doc.

Wanted to tell you all of an exciting thing coming up for In the Arms of Friends. We are privledged to be one of 14 charities that are working with In Play - a premier entertainment complex for kids and adults that is opening in June in downtown Omaha. For $20 you can buy a ticket for an entire day of unlimited use of rides and games on Sunday June 5th (our designated day). In the Arms of Friends gets $10 of each ticket. Then before you leave, you get a $20 gift card to use the next time you come to the In Play complex! So the event is esentially free for you and a good way to help us raise money to help kids with cancer. If you would like tickets, please e-mail (e-mail address is below) me and let me know. If you want to help us out even more, your group or organization can help us sell tickets! It should be a great day of having an exclusive first look at this awesome place and without a big crowd. Also, put April 16th down for some great shopping at the In the Arms of Friends garage sale!

Thanks for checking in. Please, please go give blood! Choose to make this a great weekend and choose to make someone's day! Prayers for all the kids fighting, in remission and/or dealing with the life long side-effects of Childhood Cancer! Links all around of kiddos in all those positions. Please visit them and leave a note to say you care! A big wooooohoooo for Josh Larson as his rescan came out clean!

Love, Kellie, Steve, Jake, Brandon and Little Ben :~)

Friday, February 25, 2005 12:47 AM CST

Good afternoon! All is well here and as you can see from the pictures, we traveled up to the great cold north to Minnesota this past weekend. The boys had a 5 day weekend, so we took advantage and headed out of town to Minneapolis. It was cold up there of course - what else do you expect - it's Minnesota, but what a fun city! We went to a Timberwolves game, Camp Snoopy and Lego Land at the Mall of America and swam at the waterpark and played in the arcade of our hotel that was in Downtown Minneapolis. Ben did great on the trip up and back (a 6-7 hour drive), but he did not like to sleep in that pack and play. Being in between mom and dad in bed was a much better option - for all of us! Jake went on his first big roller coaster and climbed to the top of a rock wall at Camp Snoopy and both boys braved the log ride with Steve. It was a great trip!

We scheduled Jake's next set of scans for March 10th. I can't believe it's that time again. He has been feeling good and is looking forward to playing baseball this spring. Soccer will start here soon for Brandon and this weekend is his 6th birthday!!!! Happy Birthday to my sweet, sweet little Brandon! He is having a party with friends on Saturday and then Sunday is his actual birthday and family will come over that night. Ugh, I can't believe my boys are 6 and 8 and then Ben is fast approaching 1! Wow - we just have to enjoy our everyday as they go by so quickly! Steve is so busy at work and me with the jewelry business and of course the foundation. Steve is starting on finishing the basement too, so there is always something going on.

Please have prayers for all our little cancer fighting friends. Prayers for my friend's mom who just found out she has ovarian cancer and for the kiddos we have links on here to and for all the Caring Bridge families out there. What a great community of caring folks there are on Caring Bridge! Josh Larson's rescan is coming up and Tanner is in for chemo right now. Thanks so much for checking in on us and I am so damn happy to report nothing medically on Jake! Could the feeling of remission get any better? Yes, if we were farther into it I suppose, but we will take it for now! No need to wish the days away as there are good ones till we get there!

Go give blood!!!! It's desperately needed!
Have a great weekend and love up those kiddos!

Love, Kellie, Steve, Jake, Brandon and Benjamin :~)

Tuesday, February 15, 2005 10:13 PM CST

Hi, Everyone! New pics up today. Hope all of you are doing well. We are all good. Everyone is healthy again. Ben is doing great and getting used to having to sleep through the night again without mommy coming in and holding him. His rash was just an amoxicillen rash and not an allergic reaction to the penicillen, so that was good news.

We had a GREAT time at the UNL Dance Marathon!!!! Those students were awesome putting that whole thing together and taking such good care of us - they raised over $38,000 for Children's Hospital!!! Thanks so much to our family representatives, Abbey and Adam who we had so much fun with and to all the kids who danced and gave their time. At one point during the night, they had a break-dancing group there. There were all the dancers - around 350 - sitting in a circle, watching the awesome moves these guys had. Then they asked for people in the audience to go and show their moves. Of course Jake's hand goes up immediately. Now if you have been over to our house in the last year, you have probably witnessed that Jake is really a decent breakdancer on our wood floor. Not sure where he got it from, but he's really pretty good. So when he gets out in that circle in front of everyone, no one is expecting him to bust a move. He did and the place ERUPTED! It was great! Brandon showed us some great moves too during the night and both of them had a great time playing with Nebraska Football players for hours on end. We all stayed up (well, Benny fell asleep in my arms at 10) until 3 and then went back to the hotel to crash for 3 hours and then got up to go back for closing ceremonies. Thank you UNL Dance Marathon organizers and participants!!!! What a great event for the best cause - Children's Hospital. Have I ever said on here that Omaha's Children's Hospital is the BEST EVER? I know I have a thousand times or two. It's true and like I told that crowd at the Dance Marathon, it houses the greatest Oncology staff on the planet!

Ok, so that's all for now. Please have prayers for all our friends that are fighting, in remission or those that have lost their battle. There are far too many. Go to www.curesearch.org and get your green bracelets for Childhood Cancer and help those numbers decrease! Thanks to all of you that still check in on us and to all the fellow cancer parents out there that care and root for our little boy as much as we care and root for your kiddos!

Choose to make it a great weekend and please make time to go give blood!!!!

Love, Kellie, Steve, Jake, Brandon and Benny Boo :~)

Friday, February 11, 2005 9:17 AM CST

Hello Everyone! Hope it's a good Friday on your end! We are all good here! New pics are up today on the photo page.

Ben is doing better with his cold, although it has been rough on him - lots of lost sleep. Now he has some sort of reaction going from the antibiodic probably and so we are headed back to the pediatrician this morning to go see if we are calling it a penicillen allergy or not. It's not cut and dry hives, but he has a red, raised rash all over his body - he looks like he has the measles. Poor kid. Of course he is smiling like always. He is such a good, good baby.

Jake's pic from above it from a radio interview that we did on KAT 103 that will be played on their radioathon they do for Children's Hospital in April. I will let you know the weekend it is as our spot will be played 4-5 times over the course of that weekend. Both boys have had a good week at school and are all geared up for their Valentine Parties today at school.

We are going to the University of NE in Lincoln tonight for their Dance Marathon that they do down there to raise money for Children's Hospital. I'm sure the boys will have a great time and we will have to take lots of pictures.

Some of our friends that need your prayers are Josh Larson as he had some conflicting reports from his scans yesterday. They are going to rescan in 3 weeks. Also Tanner as she could not get in for chemo on Thursday because of low counts. Brant Hamilton as they continue their fight, and Benjamin Jones as he lives his everyday given. Prayers also for special friends of ours - Haley (link below) as she fights hard at St. Judes and for Ryan as his cancer has returned and they cannot do his stem cell transplant now (www.caringbridge.org/ne/ryan). Also, please visit this site to see one sweet little boy that was too cute for words that lost his battle with hepatablastoma(www.caringbridge.org/ne/camer). His uncle wrote an incredible song that is in their journal and check out their photo page. It really shows the impact on a family of losing a child to cancer. Plus prayers for all the kiddos in remission including Jake that they stay there and for all our Caringbridge friends. Please go give blood and check out CureSearch.org for green bracelets in support of Childhood Cancer Research.

Make it a great weekend - we will be enjoying the sunshine and warm weather we have here - spring is peeking around the corner!!! Thanks for checking in on us!

Love, Kellie, Steve, Jake, Brandon and Mr. Benny :~)

Monday, February 7, 2005 10:29 AM CST

Hello! I will be adding new pics later in the week. Thanks for checking in on us. Thanks for all the notes of congrats too for Jake on his Young Hero Award. We are all doing pretty good. Ben has a cold that the boys have had too, but being a baby it's just harder on him. True to form of all our kids, he got his first ear infection this past week also. He hasn't been eating or sleeping the greatest and ran a fever last night, but overall he is doing well.

We had a great weekend in Cedar Rapids, Iowa, visiting our good friends from college, Shawn and Missy Gilbert and their son Cole. Shawn is a basketball coach at Mount Mercy College there, so we went to his basketball game on Saturday. The boys had a great time, because they got to sit by the announcer and say "swish" into the microphone when the players would make their free-throw shots. Plus they got to shoot hoops at half time. What could be better than that for two little boys? We ran into some snow on the way home, but it wasn't too bad. We have about 4 inches on the ground this morning - a nice blanket of white. Spring did peek around the corner here last week with temps in the 50's and 60's. It was great playing outside with the boys on those warm afternoons!

Some updates on our friends for you...Tanner is doing well and had a successful collection of her stem cells last week. She will start chemo again this week. She will probably have 2-3 more rounds of chemo before heading into stem cell. Hopefully her counts won't take such a hit like they did this last time. Please continue your prayers for Brant Hamilton and Benjamin Jones and their families. Also prayers for two of our other Nebraska friends that could use a visit from some well-wishers to their sites - Ryan and Haley. Ryan is a young man who is in New York getting ready for a stem cell transplant as part of a clinical trial for his desmoplastic tumor (www.caringbridge.org/ne/ryan). Haley is a great kid who is participating in a clinical trial at St. Judes in Memphis. She has metastic Wilm's tumor and could use your prayers also(www.caringbridge.org/ne/haleygirl).

In the Arms of Friends has been busy making plans for this next year. Right now we are getting a new Treat Box done for the Oncology Clinic at Children's, and we continue giving bags with gift cards and information to newly diagnosed families. Some of our fundraisers this year will be our garage sale April 16th and our dinner with St. Andrew's Methodist Church and Carrabba's Restaurant in July. In June we will be part of the new entertainment complex called In Play and their "14 days of Giving." The first 14 days they are open, you can get a ticket to enjoy their faicility which includes awesome games, a climbing wall and simulators and a good portion of the proceeds will go to our foundation! We are honored to be one of the organizations to be able to participate in this opening of this awesome complex! We are also making plans to have a walk in 2006 which will raise money for CureSearch, which is the foundation for childhood cancer research. We are also going to participate in some craft shows this spring to sell our bracelets for Childhood Cancer along with items such as t-shirts and our awesome tote bags. We have big goals this year to help a lot of families financially as having a child in treatment is so devastating to a family's finances. We also want to continue fufilling the wish list for the Oncology Clinic, providing entertainment outlets for these families, donating to Camp CoHoLo, coninuing to give our Stephanie Bracelets to mothers who have lost their children and of course giving money for research. Liz Larson has done a great job of getting tickets to events at the Quest Center. We have had many kids and their families enjoying the rodeo, monster trucks and Stars on Ice thanks to Liz arranging the tickets for families on treatment with the help of her friend Jane and the generous people at the Quest Center. Wow - a lot going on! Thanks to all of you that are collecting and pricing things for our upcoming garage sale and to those of you that have contributed your time and donations to our cause! We have to keep going - so many kids to help!

Well, I better scoot - Benny is coughing and needs his mama! Have a great week and please go give blood!

Love, Kellie, Steve, Jake, Brandon and Benny Boo :~)

Friday, January 28, 2005 10:50 AM CST

Hi, Everyone! I just realized as I see the date on this journal that today marks two years since Jake's surgery! Two years ago today, Steve and I were handed back the life of our little boy. I am eternally grateful for Dr. Hellbusch and his partner Dr. Pucionni who removed that beast of a tumor from Jake's head and kept him alive as he lay there bleeding profusely. I can only imagine what that operating room looked like in those few hours. As doctors they can only imagine the gratefulness Steve and I will forever hold in our hearts for their work.

Yesterday was a wonderful day. As you can see from the new pictures, Jake was awarded with the Young Hero Award from the Nebraska National Guard! They came to his school and with all of the second grade, his teachers from the last three years, his principal and other great staff from Wheeler, Grandpa Gary, Uncles Jeff and Shawn, Anisa and Christy from the clinic, friends Jennifer and Jake Novacek and of course the very proud mom, dad, Brandon and Benny watching, he received his certificate and medal. It was a total surprise to Jake. He thought he was just going down to PE Class! Thanks so much to the Nebraska National Guard for the award and all the goodies you gave Jake, and to Mr. DeFreece (principal at Wheeler)for organizing the whole thing! What an incredible memory for all of us. Jake talked about it all night and was so proud!

Tanner got good news yesterday as her MRI showed 2 stable tumors and 2 tumors that shrunk in size!!! This means that Tanner can proceed with the rest of Plan A and head towards a stem cell transplant. We are so happy for the Lusks! Please continue your prayers and leave notes for Benjamin and Brant (links above). Also, prayers for Haley (www.caringbridge.org/ne/haleygirl) as she waits for news of her acceptance in a clinical trial at St. Judes. Remember to help these kids and those that are in remission or still fighting, you can go to www.curesearch.org to give a donation or buy some of their cool green wristbands and or greeting cards with the money going towards childhood cancer research.

Jake's birthday was great. He did some bowling with friends on Sunday. We also had both boy's rooms painted this week and they look great! When they came home from school yesterday, the painting was done and Jake had us play "Trading Spaces" as we "revealed" the makeover of their rooms. They both made drawings of how they wanted the furniture and so we moved that all into place last night. Ben is doing great - just cruising around the furniture and being cute.

Something funny and that is so typical of Jake was a conversation he and Steve had last night before bed. Jake says, "Were you scared, Dad, when I was being born?" "Of course I was," replies Steve. "Were you scared because you thought Mom and I were going to die?" "Not really scared of that," says Steve. "Oh, then you were scared because you were like 'Hey, I need some money over here! I have another mouth to feed!'" Too funny!

Choose to make it a great weekend! Give some blood, go out with friends, hug up your kiddos...smile a lot! As always, thanks for checking in on us and for keeping Jake in your prayers!

Love, Kellie, Steve, Jake, Brandon and Benny Boo :~)

Friday, January 21, 2005 11:26 AM CST

Goodmorning! Tomorrow is Jake's 8th Birthday!!!!! Happy Birthday my sweet, sweet 1st born boy!!! 8 years ago I was well into labor at this point at our house in Orlando, Florida, trying to keep my mind on something else besides pain and getting excited to meet the new little baby that would change our lives many times over. I am so thankful to have Jake here to celebrate this birthday. 2 years ago for his birthday, Steve and I got Jake an Embolization procedure at the University of Iowa as he was just starting his fight against cancer. Last year he was recovering from treatment and we were getting ready to go on our Make A Wish trip to Hawaii. This year we have a very healthy, strong and happily normal 8 year old boy! I took a balloon and some birthday treats up to Jake this morning at school. He gave me a couple of huge hugs and said "thanks, Mom" 4 or 5 times. Then he just trotted happily down the hall back to his classroom with a huge smile on his face. Wow - what an awesome morning I have had already!

We are all doing great - the cleaning and organizing from the last two years continues around here. We have been collecting and pricing stuff for the Arms of Friends Garage Sale Fundraiser that is coming in April and even starting to lay plans to start working on finishing the basement. We would like to at least get the guest room and bathroom done down there so we have a place for friends to stay. The boys's rooms need painting too, so we are working on that. Benny Boo is doing great and is pulling up on everything. He is all over, but somehow we have been lucky enough that he hasn't found the stairs yet. Just a matter of days or maybe even hours, though.

Please keep our little friends in your prayers. Brant Hamilton is having an important MRI today to see if the chemo he has been trying is working. Please visit them and offer some encouraging words. Also Tanner is still in the hospital with low counts, but hopefully will be out this weekend sometime. She will probably have her MRI next week also. Continue too for Benjamin Jones and all our friends that are in remisssion.

You may have seen where Cancer has now surpassed heart disease for being the number one killer of Americans! It is the number 1 disease killer in children also. More kids die from cancer than Diabetes, AIDS, Asthma, and Cystic Fibrosis COMBINED!!! Brant Hamilton's dad expressed how he is amazed that all these people die from this horrible disease and all these thousands of kids, and relatively, not that much money is spent on cancer research by our government and that of other countries. Yet we spend money on other things so freely. I wish we could get the kind of outpouring of money and famous people raising money for cancer research like we see with this Tsunami disaster. I'm not wanting to take anything away from those people as they need it too, but why don't people get upset over the hundreds of thousands of kids and poeple dying from cancer all the time? Of the money spent on cancer research by our government, very little of that is spent on Childhood Cancer research. And still all these beautiful kids just keep dying! You can go to CureSearch.org to make a donation to Childhood Cancer research. They sell great greeting cards and they have green wristbands on them that say, "Reach the Day" like the Lance Armstrong ones and all of that goes towards kid's cancer research.

Off my soapbox now and going to enjoy the day. Have a great weekend and thanks for checking in on our family!

Love, Kellie, Steve, Jake, Brandon and Benny Boo :~)

Thursday, January 13, 2005 10:58 PM CST

Update on Tanner from Wed, January 19th - Tanner is still in the hospital with low counts. Her ANC today was 10. So she did not have her MRI as they don't want to take her down there to radiology with low counts. She hopefully will be able to go home in the next couple of days as it looks like her counts are on the way up. She is feeling great otherwise and is just trying to keep busy. Thanks so much to all of of our friends that have dropped off gifts for her and have been praying for them!

I just lost a journal I was almost done with. Oh, well, let's try this again. It's frigid here - what else do you expect with it being January in Nebraska? 80? 60? Ha! We have the extremes of all the seasons here along with the best of all the seasons. So it's not all bad. This too shall pass. Supposed to be -7 tonight. At least I know I don't have to pack snowpants and snowboots tomorrow with the boys since they won't be going outside for recess with a high of 3 tomorrow!

Jake is doing great - I think the kid always has food in his mouth and adds muscle by the hour. I am getting a glimpse of my future with three boys....they eat, I go to the store, they eat, I go to the store, they eat, I got to the store, they eat, I got to the store...then I get up and do it again the next day.

We went to see Jake's neurosurgeon on Wed for a follow up appointment. Jake greeted him with a big hug which Dr. Hellbusch returned while picking him up. Not a typical response from Dr. Hellbusch as he can be very reserved (mind you he is one of the most caring doctors who reads his kids'scans personally with a personal call afterwards to the nervous mom and dad (aka Steve and Kellie)and never shaves a kid's head for surgery - he learned how to make a good cut through it as he doesn't think the kids need to lose their hair along with having brain surgery!). Anyway, we got good news there with Dr. Hellbusch saying that the spot on Jake's skull that is spongy to the touch is no more at risk for injury than anybody's eyes. He can't play tackle football, soccer or other contact sports (darn, I had just signed him up for little league boxing), but he can play baseball, basketball and just what Jake was wanting to hear for the last 2 years....flag football- as long as he wears a helmet! We also learned that Dr. Hellbusch does not want to do further surgery on Jake's head to repair his skull as it would be riskier to go back in there than to just leave it soft in that small area. Because of the radiation, there probably won't be any more bone growth, but it is a small size an in a typically less vulnerable area (temporal bone - right above his ear). They did test the reflexes in his leg with the knee tapper and nothing moved - don't know if that side effect from chemo will ever come back. But Jake's walking continues to improve, so that's what's important. We are going to continue Jake wearing his helmet at recess with the snow and ice, but when it warms up, he can probably wear it less. And he doesn't have to wear it in gym all the time either. Jake was so happy with all this news that he did the happy dance out in the lobby.

Talk about challenges - Tanner's family has been through the ringer this week and has shown what true resolve is. I admire them for being able to still stand after everthing they have been through in the last 6 days. Last Thursday night, Tanner went into the hospital with no blood counts and a fever, the next day, Marjorie gave birth to sweet little Brody Jack and then a couple days later their moving truck shows up and has to be unloaded! Thanks to Liz Larson who sat with Tanner, Chris was able to run over to Methodist to catch Brody's entrance and Mom and Baby are doing great. I just can't believe that all these very stressful, life changing events have happened to them in the last 5 days! Thanks to friends of ours (Tom Pfanenstiel, Jamie Yarnell, Gary Beresh and Ryan Novacek) and a bunch of friends and coworkers of Jay Larson for helping unload the moving van! Plus in all of this, they have a 1 year old also and only one car here right now. Tanner is still in the hospital with low counts. She has an important scan coming up on Monday to see if there is response from the chemo, so please keep all of them in your prayers for good results and for strength for them in all they are dealing with and for some sleep! My heart just goes out to them as I know how hard it was when Jake was in the hospital and then to have a new baby and a 1 year old and no time to unpack boxes. Like I said, they are a family to be admired.

Please also have prayers for Brant who has important scans coming up on the 21st and for Benjamin Jones as he is having more symptoms of disease progression. Also prayers for Haley (www.caringbridge.org/ne/haleygirl) who is sick right now, and for Cameron's family as they have just lost their adorable little boy to hepatablastoma(www.caringbridge.org/ne/camer). Please pray for all kiddos fighting cancer and for those in remission to stay there forever!

I wanted to add that Brandon and Ben are doing great. Brandon made me a birthday card all on his own this week that said, "Mom is beautiful and sweet. I love my mom." Of course it was in Kindergarten spelling, but he is so good with making words that I understood all of it. Tonight he brought me the book that he wanted me to read to him before bed and I opened it up and there was a picture he made for me! He's such a thoughtful kid. Ben is doing great. He's 8 months now and crawling, sitting and pulling up to stand on anything he can reach. It's amazing what they learn in this 6-12 month age. It's absolutely wonderful having a baby in the house and how the boys love to share in his every little milestone.

Lastly, Jake reached an incredible milestone this week that Steve pointed out to me. January 9th marked the longest he has ever gone to school! His tumor was found 2 years ago on January 8th. Normal life with school stopped for 2 years for him while he fought for his second chance at life. It has been a year of transition for him from being the sick kid just trying to get through each day, to being a normal second grader that has to get up and get to school everyday. Way to go, Jake!

Choose to have a great weekend and choose to make a difference in someone's life....give blood, volunteer, communicate better with those you love, do a random act of kindness, register on the bone marrow registry...whatever. It all counts.

Thanks for checking in on us!
Love, Kellie, Steve, Jake, Brandon and Benny

Monday, January 3, 2005 10:38 PM CST

New pics are up! Happy New Year from the Beresh's!!! We had a great time ringing in the New Year with our friends the Novacek's and the Wilcoxson's. 3 out of the 5 kids made it to Midnight to ring in the New Year, including Brandon and Jake. We are ready for continued health for our family in 2005!

Looks like we have a little winter weather headed our way. The kids are supposed to go back to school on Wednesday, but if we get the snow we are supposed to, that probably won't happen. We are ready for some snow around here!!! It will mark the first of any real accumulation we have had all winter. The boys are psyched and ready to get into their snow pants!

The boys had a good time on Sunday at the Harlem Globetrotters with us and Grandpa Gary. The boys thought that it was just going to be a basketball game and it took them a little while to figure out what was going on. Once they saw it was ok for them to be making fun of the ref and they weren't handing out technical fouls, they really enjoyed it! Ben even went and he loved all the activity and clapping. He is clapping now himself, so he was delighted when everyone around him seemed to be mimicking his new talent.

So all is well here and we are looking forward to a couple more days of being home together. I love having the boys home - the days speed by, though, and it seems we can never fit in all we have planned. I am thankful for the snow coming as it gives us a couple more days to hang out!

Please continue your prayers and words of support in the guestbooks of Tanner, Brant and Benjamin Jones. Tanner is out of the hospital from her first chemo and is doing pretty good. No baby brother yet, but we are expecting him anytime! Brant has started a chemo pill to treat the tumors in his spine and brain and Benjamin just keeps fighting. It doesn't take much for us to be reminded of the tenuous edge we walk with Jake's disease being in remission. We see it everyday in our friends that are having to fight again. But we will keep marching on despite our fears and love the life that is before us. With the wake of the Tsunami disaster, pain and suffering can come unexpectedly and quickly. We pray for all those people, all the kids out there fighting cancer and those with other medical and personal challenges. Life does not promise days without pain, so we have to have faith that a loving heart and strong will for happiness can create more days without it.

Thanks for checking in on us! Please go give blood!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Monday, December 27, 2004 9:15 AM CST

Goodmorning! New pics are up. We had a wonderful Christmas! Everyone felt great and the boys loved every minute of it.

First a Tanner update. As you can see on the photo page, Tanner is doing great. She is recovering from surgery great and has been feeling good. Her family got all moved into their new house and Tanner will start chemo on Tuesday. They will put in her central line and start chemo that same day. The plan is to do 2-4 rounds of chemo, rescan to see if the tumors are responsive to the chemo, and then if they are head towards a stem cell tranplant and then follow with radiation. Obviously this is hard for her parents to have to start this all again, but they are holding up. It was wonderful having them here for Christmas to help us celebrate!

Christmas Eve was spent with my family here at our house and Tanner's family. We ate, went to church and then came home for presents. After eveyone left, the boys prepared for Santa and were so excited. They put out some reindeer food and cookies, carrots and milk. We had been tracking Santa all night long on the NORAD website and so the boys were in a panic to see that Santa was in New York and they weren't in bed yet. Brandon was especially worried that he would not be asleep when Santa passed over. "You can't lay with me tonight, Dad, I have to get to sleep!" "Hurry up and put Benny down, Mom, so you can get into bed." Good thing the kid can fall asleep in a second or he might have blown a gasket. Jake was also worried that since it takes him longer to get to sleep, he was going to blow it for Brandon. But the timing worked out and they made it asleep before Santa made his pass.

They were up about 7:30, ready to see if Santa had been there. After we opened Santa presents, we went over to Steve's dad's house and spent the day with Steve's family. It was a great day too. The boys got so many great gifts - thanks everyone! Oh and thanks to Santa too! Christmas night our friends Joe and Brooke came over with their triplets! They are 2 months old now and doing great - soooooo cute!

Joe and Brooke gave the boys these cool air beds that have a sleeping bag attached to them and that is what they have lived in for the the last two days! They have been sleeping in them on Jake's floor at night and sit on them to watch TV or play games during the day. I think their plan is to sleep on them every night this week. They are going to get used to sleeping in the same room and want to move in togther!

We have big plans this week to play all the new games, put together all the new Lego sets and use all the new art supplies the boys got for Christmas! I am so excited to have all the boys home as I'm sure Benny is too. Mom can get pretty boring!

Thanks too to all of you that have donated to In the Arms of Friends this Christmas! We do appreciate it and will put your money to good use!

Have a great week and a safe and Happy New Year!!!

Love, Kellie, Steve, Jake, Brandon and Benjamin :~)

Friday, December 17, 2004 2:09 PM CST

Hey, Everyone! Just wanted to give you an update on our little friends, Tanner and Brant. I have added Brant's site as a link above with Tanner and Benjamin Jones's - all of them need your prayers! Tanner had surgery this morning to do a biopsy on the tumors in her brain. She is out of surgery, doing well and they are preparing to take her to the PICU. The tumor looks to be of the small-cell variety which would suggest Ewing's, but pathology will have to continue to be sure. They were able to remove one of the tumors (out of 6) in it's entirety and it looks as if the others are condusive to being removed with gamma knife. The neurosurgeon did redo the reconstruction of her skull from her original surgery, and reports are that her head has lost it's flat spot and looks fantastic! So it was a good day for Tanner, so we celebrate that today! We will keep you updated as to what will be next in her treatment. Her mom is doing well and is due in a couple of weeks. They have found a house here in Omaha and hopefully will be in before Christmas.

Brant Hamilton is recovering from his surgery at Mayo's and is out of the PICU. The are looking into treatments available and hoping to get him home to Des Moines very soon.

Jake is doing well as are the rest of us. Just preparing for Christmas and enjoying our unseasonably warm weather (in the high 40's and low 50's here). Something funny I overheard Jake saying last night to Steve, "I am one healthy kid, Dad. I can eat what I want and I never get fat. I am just a heathy kid. Well, there was that one time I had cancer, but other than that, I am heathy." Only a 7 year old boy would describe his cancer like it was a bad cold! We will be here in Omaha for the holidays as all of our family is here.

Thank you, thank you to all the people that have given to In the Arms of Friends this holiday season - your generosity means so much to our foundation and to the kids we help! Please continue the giving with giving blood. Don't forget the blood drive tomorrow from 12-5 at Wheeler Elementary at 178th and Harrison. Hope to see you there!

I will keep updatedon our friends. Please check in on Benjamin Jones too as he had a lot of pain as his cancer defeats his little body. Please pray for all the kiddos out there that are sick and fighting.

Thanks for checking in on us!
Love, Kellie, Steve, Jake, Brandon and Ben :~)

Monday, December 13, 2004 10:29 PM CST

Update on Tuesday Morning....
Brant Hamilton has indeed relapsed. This time the tumor is in his spine, compressing his vertebre. Removal of the tumor will be difficult and chemo is not an option. They are doing further scans this morning at Mayo. He needs out prayers. His site address is further down in this update.

Hey, Everyone! Just wanted to have you all pray for a friend of ours, little Brant Hamilton who is from Des Moines. He was in remission from a brain tumor (Ependymoma)and started having headaches and was life-flighted to Mayo Hospital in Rochester, MN tonight. I don't know any other details, just that he is obviously in desperate need of prayers!

All is well here. Jake is feeling good and all the boys are getting ready for Christmas. They went to Target tonight and used some gift cards that Grandpa had gotten them to buy gifts for the family - thank goodness for that $1 section of Target!

Tanner is doing well. She had a lumbar puncture and bone marrow aspiration last week that were clear! She also had an MRI today that showed very little if any growth on the spots in her brain. Seems very weird if it was a Ewing's relapse for those tumors to just be sitting there and not growing quickly. Keep up your prayers for her that they do find out that it is not a relapse and possibly something else? It's all very puzzling at this point. As of now, there are plans to do a biopsy on Friday. Her family has found a house here and are getting prepared to move. They go from Orange County, CA to Douglas County, NE. Quite a change, but they seem to be loving it so far. Tanner is feeling good and just keeps rolling on. We will keep you updated on how things go on Friday.

We got our first In the Arms of Friends Newsletter out and are busy making plans for next year. We went to the Candlelighter's Christmas party at the Hospital last Thursday and it was a lot of fun. We have made such incredible friends up there - truly inspiring parents that we feel so blessed to share the common thread of childhood cancer with. All the nurses and docs were there too which really means a lot to us parents - thanks Children's Oncology Folks! If I haven't mentioned it before, you guys are THE BEST!

Please leave a note in Brant's guestbook - his mom Julie and I are special friends - they just had their 3rd boy too. His site is at www.caringbridge.org/ia/brant-thomas.
Please continue your prayers for Tanner and Benjamin Jones.

BIG NEWS!!!
The 2nd Annual "Take it for Jake" blood drive is this Saturday, December 18th from 12-5 at Wheeler Elementary School on 178th and Harrison. Please come and celebrate Jake's one year of remission by giving the best gift of all!!!

Thanks for stopping by!
Love, Kellie, Steve, Jake, Brandon and Benny :~)

Friday, December 3, 2004 12:27 AM CST

Hi, Everyone! Thanks for the notes of congrats and support in the guestbook - we love those guestbook messages and they mean so, so much to us! I'll start by saying once again that all Jake's scans are clear! So he has met a huge milestone of being one year cancer free. We are so happy and relieved. He will continue having these scans every three months for the next three years, so our nerves will start up again in a couple months, but for right now we can exhale.

Now let me back up some. A lot has happened in this last week. In my last post I talked about Tanner, our little friend from California that had Ewing's of her skull just like Jake. They had come to visit us this summer as they were passing through to go to Florida to see us and I'm so glad they did. The kids and us had so much fun. Well, Tanner's 6 month scans showed that she had relapsed and her mom called me telling me not only the news but their frustration in getting anyone to move on doing additional testing or to even talk to them at their hospital in L.A. It was alarming how they can't even talk to attending physicians there or have one contact to manage Tanner's care or how the other departments needed haven't even looked at her scans almost 2 weeks later. A Ewing's relapse is very serious and nothing to wait on. Tanner's relapse is to her brain which is extremely unusual for Ewing's. Her parents were desperate for anyone to give them some answers and so frustrated with how they were being treated that within a couple of hours they packed up their new RV and headed East to....Omaha! Now I can't even begin to express on here how incredible the oncology staff is here. There are so many reasons why they came here - I could go on forever. So they traveled over Thanksgiving to get here for a Friday morning appointment with one of the oncologists at Children's. The testing has been rolling and Tanner's scans have been clear so far! This is great news! She does have 6 spots on her brain that will be biopsied on the 17th to make sure they are Ewing's as this is not a typical site for relapse. But so far it looks like it is contained there and she and her family are very happy to finally be in a facility with doctors that care more about the child being treated than the article they are having published or how it is going to make them more well known. It has been great having Tanner and her parents at our house and with us at clinic like they were yesterday. I love having a little girl around and there is nothing better than when she just cuddles up with me out of the blue on the couch. She is so sweet! They also have a 1 year old daughter and Tanner's mom, Marjorie is 34 weeks pregnant, so you see the courage and the desperation these people have for getting Tanner excellent care. Little sister will be joining them here in Omaha next week and Mom is doing great so far. They are expecting a little brother in January. Right now they are busy getting some more permanent housing and getting acclimated to our cold weather! Please keep Tanner in your prayers as she has a long road ahead of her.

Now on to Jake. Yesterday could be described as a great day, then the worst day and then great again. We had a major scare with Jake's scans. In the Arms of Friends bought the clinic a new tree (badly needed improvement) with kid friendly ornaments. So we were having a great time putting up the tree and visiting with Josh, Charlie and their families as they were up there for scans and check-ups too. After the dreaded IV got put in (see pic), Steve and Jake headed down for Jake's brain MRI, chest x-ray and skull x-ray. They came back up after a couple of hours or so and we hung around visiting and then saw Dr. Abromowitch. She checked him out and all was good and we were getting ready to leave. I was in the bathroom changing Ben's diaper and I heard Dr. Abromowitch talking to Steve in not a voice I like to hear. It was her serious voice and when I saw them discussing the report from his chest x-ray, I was mortified. There was a spot on his lung. It looked like it could be where two blood vessels cross over, but it could not be ruled out as a nodule ("nodule" is the nice term for small tumor. When the tumor is big, it's nice term is "mass"). I felt everything come down to my toes and wanted to scream in panic. Ewing's Sarcoma loves to relapse to the lungs. That's why we do the chest x-ray. When you relapse with Ewing's typically that's where it is. I was sick. Steve was sick - I can't even describe this feeling. We have had a scare like this before with a brain MRI when Jake was on treatment, but this was worse. We are a year out, Jake is out of the grind, he is doing great, we know how bad this would be. Fear is a very powerful emotion and I have never felt it like I did yesterday. "We need to do a CT of his lungs," someone said; so on a mission we turn to get Jake to run down there and do just that. As I am turning around, someone says, "We will need to put his IV back in." Then it hits me. The fear, the panic, the determination to get him down there to CT as fast as we could melts into utter sadness and despair in seconds when I realize to Jake a relapse would all just mean more pain, more needles, more misery. "I can't do this to him again," I thought. My words to him just stuck in my throat, and then Christy the Child Life Specialist came walking out and I just looked at her and started to cry and she hugged me. "It's not good," was all I could get out and fell into her arms. For a while, I thought that was as strong as I could be, but then I saw Steve telling Jake that we needed another IV b/c some of the pictures got messed up. Jake was crying, and I just quit my crying and took his hand and led him back to the room to put in his IV. He is such a great kid. He was crying and begging us not to, but he held still as it took two pokes to get a good line in. Then he and Steve headed down to the CT. I found Ben who I must have handed to someone when we were looking at the scan report and took him to a back room to feed him and think and worry. I could tell that the staff was worried. Dr. A, Anisa, everyone. They were worried and so was I. As I was waiting for them I just went through in my head what our next step would be. Surgery, chemo, stem cell harvest, transplant if we could keep the disease in check long enough to do that and fighting with the insurance to approve all of it. My mind was rolling, my heart was barely beating and my stomach had left the building. Ben fell asleep in my arms and we waited. Just as soon as Jake and Steve were back up in clinic, Dr. A was headed down to radiology(Do you see why this place is the best? This whole process might have taken 2 weeks in some hospitals. Here it takes 2 hours and the doc runs down to find out for herself). She came up I don't know how many minutes later and directed us and Anisa to one of the back room. She erupted with "Everything is clear! There is nothing there! Everything is fine." We all hugged and cried and got ourselves together to go out to the playroom to tell everyone else - the other parents including Tanner's who knew what was going on just from our faces and body language - that everything was fine. We packed up, said our goodbye's and Happy Holidays and left. We picked up Brandon up from Steve's office (Grandpa Gary had picked him up from school) and headed for Valentinos. Then off to Target for a little treat for the boys. Three pokes constituted that for Jake and Brandon's flexibility earned him his. Then we came home and watched the mindless fun of Survivor and The Apprentice. That's about all Steve and I could handle - we were spent. I can't say enough how much we love that clinic up at Children's and the people that work there. I don't know how they do it. They lose kids that they love all the time, but they are so devoted and loving and committed to making that place a healing place - not only of the body, but of the spirit. Thanks Dr. Abromowitch, Anisa, Claudia and Christy for getting us through the day. Jake doesn't know the whole story - he thinks we just needed more pics b/c the others got messed up. He knows his scans are clear and that's what's important. We are now on a 3 month schedule for blood counts (Jake's were phenomenal yesterday) as well as the continued every three months for scans. One year of remission in our pocket. This is big to make it one year out with Ewing's. Jake has done it and we pray that it just keeps going this way as the months pass by.

Wow - I'm tired from this update. Some prayer requests - for Josh Brestle's family who lost their little boy this week, for Haley's family as they did not get good news on her scans, for Tanner as she begins her fight again, for her family as they relocate their lives, for Benjamin Jones as he is put on Hospice, for Ryan as he heads into more surgery, for Skyler as they search for his next treatment, for Josh Larson, Charlie and Morgan Peters, Blake Pelster, Cameron Miller, Brandt Hamilton, Jace Carrico, Brooke Brion, Jake and all the other kiddos out there that we know that are living and loving remission that it continues until they are old and gray....

Thank you for worrying about Jake and checking in on him. Enjoy the new pics from Jake's day of testing and please sign the guestbook. Please, please go give blood! The Oncology Clinic up at Children's has a wish list and so does our foundation. If your families are looking for a meaningful way to give gifts this year, please e-mail me (see below) and I can pass those wish lists on to you.

Have a great week and love up those kiddos,
Love, Kellie, Steve, Jake, Brandon and Ben :~)

Thursday, December 2, 2004 7:39 PM CST

New Pics are Up! Hi! Just a quick note as we are just spent from one heck of a day. First of all - all Jake's scans are clear. The results of some of his preliminary lung x-rays showed a new nodule that could suggest a relapse, but we did further testing and all is clear! It is a long story and I have so much else to tell, but like I said, just not the energy for it. It was a very scary and emotional day to say the least. Jake does not know that we had a scare today - he thinks we just needed more pictures becasue the others got messed up. He does know that his scans were clear and is relieved as he is getting mature enough to be nervous for them. Thanks for check in on us! Thanks too to the staff at Children's Oncology clinic for all you did for us today! Once again confirmed that you are THE BEST!

Love, Kellie, Steve, Jake, Brandon and Ben :~)

Monday, November 22, 2004 9:37 AM CST

Wed - I just have to add something here in the Thanksgiving spirit - THANK GOD FOR CHILDREN'S HOSPITAL OF OMAHA AND IT'S ONCOLOGY STAFF!!!! SPECIAL THANKS TO ANISA HOIE AND HER UNBELIEVABLE CARE FOR OTHERS AND TO DR. RAMAN AT THE MED CENTER TOO! YOU ARE ALL THE BEST! And those of us here in Omaha and surrounding areas, we should support and be so, so grateful to the medical care we have here at our fingertips! Enjoy the new pics!!!!

Happy Thanksgiving, Everyone!!! Thanks for stopping by to check in on Jake. He is doing well. Just his funny, always on the go self. School is going great for him and he had a great weekend. Brandon came down with Strep Throat on Saturday morning. We were actually relieved because we thought that one of his tubes must have fallen out and he had an ear infection. So when Dr. Harrison said on Saturday that it was strep, I let out a "wooohooo." Didn't want to be investing in a 4th set of tubes! After a couple doses of antibiodic, he was feeling much better and is off to school this morning. Ben is doing great. He is crawling everywhere and the boys LOVE having the authority to tell him "no", take things out of his hands and pick him up out of dangerous situations. Brandon takes special delight in being the big brother after 5 years of being under the thumb of Jake's bossiness!

Please have prayers for our family as we head into scans next week on December 2nd. We are confident that things are ok as Jake is feeling great, but the fear is just so real all the time. So many of our fellow little cancer warriors are doing so well, but so many others aren't. Steve and I went to bed with heavy hearts last night after reading Benjamin Jone's (link above) site last night. It seems his miracle for a second chance is coming to an end. And our little friend Tanner (link above)from California who also had Ewing's of her skull is facing a relapse of her cancer. Please have prayers for them along with our friends we follow from right here in Nebraska that have a tough road to go - Haley, Josh, Skyler and Ryan. Also little Cameron who can't win his fight. Plus Blake (link below) who really needs good counts today...

SIGH....

I need to end this because whatever I begin to write just comes out so sad. I could list site after site of kids we know and love that are just not doing well and go on and on about them. But I don't need to depress everyone on a Holiday week. All of us Huskers fans will probably be depressed this week anyway after Friday's game, so let's not add to our misery, right?

Hey - check out Curesearch.org for great Holiday cards and notecards you can get as gifts. They are made by kids with cancer and all the money goes to childhood cancer research. I will be updating next week with some more ideas on how you can help kiddos with cancer for Christmas with our foundation, In the Arms of Friends or other options as well. Put December 18th on your calendar too - there is the annual "Take it For Jake" Blood Drive up at Wheeler Elementary. Amy Yarnell organized this last year in honor of Jake being done with treatment and now we will be holding it with celebration of his year of remission!!! If you would like to donate, e-mail me and let me know and I will tell you how to sign up - scbkab@cox.net.

ugh - Jake just called from school saying he has a headache. Not totally unusual for him - just a call I don't like to get when he is a week away from scans. Anyway, I need to quit and get something done! Have a Blessed Thanksgiving and please pray for clear scans for us on the 2nd!

Love From a Very Thankful Family, Kellie, Steve, Jake, Brandon and Ben :~)

Friday, November 12, 2004 2:47 PM CST

Hey, Everyone! Hope you are all enjoying this cool but very sunny day! All is well here! Brandon recovered very well from his toxic synovitis in his hip. It actually has a name! Dr. Harrison does think it was from the flu shot. No biggie, we'd take a little hip pain over the flu anyday. After resting his leg for a couple of days, the pain was gone and he has not complained of it since. Thanks everyone for your prayers and concern for sweet little Brandon. Man, he is such a tenderhearted little boy. Just as an example.....he has always been so particular about his clothes. He's not a big fan of snaps and buttons. He loves wearing warm up pants, but steers clear of jeans. So today, I was trying to get him to wear these great jeans that I just got at Old Navy with this really cool shirt I just got on sale at Target. He loves the shirt, but it does not go with his array of warm up pants. He wouldn't budge on wearing the jeans. Fine, I'm not arguing with him on it. I went in to get dressed myself and about 10 minutes later, in strolls Brandon wearing the shirt and the jeans and as proud of himself as can be. "Do you like what I'm wearing, Mom? I put it on just for you!" Ugh! What a sweetheart! He was so tickeled when I told him I loved his outfit. As much as this kid hates jeans, this was a big sacrifice for him. I just love when my rough and tumble boys surprise me with how thoughtful they can be.

Anyway, Jake is doing well. No headaches to report lately and he is really doing well in school. He limps here and there especially when he is tired, but overall he is doing great. He is thinking of playing soccer in the spring, so we are working on getting him some headgear to protect his head where he is missing skull so he can play. He just continues to amaze us with how well he is doing and how much energy he has back. I went and spoke at our church to one of the women's groups there that wants to help our foundation and telling Jake's story and remembering how sick and weak he was from chemo and how burned he was from radiation - man, he has come so far! He has 3 month scans coming around again in December. It will mark one year he has been in remission! I would say it has taken him this whole year to recover. I think the feet will always have a little limp when he's tired, but overall he has gotten so much of his old self back. Please continue your prayers for his remission.

We taped a radio spot for the American Red Cross, encouraging people to donate. Listen for it on various radio stations accross the state. Jake is so funny. When I was taping my spot, I could hear Jake in the background talking to the guy doing the taping. "Man, how old is this kid?" the guy asked me. Here's an example of Jake's personality that is always on: Steve was complimenting him the other night on his reading or something and Jake says as he has his fist tapping over his heart, "That touches me right here, Dad. Your compliment just gets me right here."

Man, I just love my boys! Ben is doing great. He is 6 months old today!!!! Just went to the doctor and Dr. Harrison used the words "incredible" and "unbelievable" when he saw how strong he was. He rolls everywhere, gets up on all 4's and pushes himself forwards, grabs onto everything and can army crawl anywhere. Diaper changing is a challenge - he is so, so strong. Always smiling and now is eating some foods and still nursing with mom. We are working on the sleeping at night and hopefully in a couple more days, we will have that all worked out. He is lean 15lbs and 10 oz (25 percentile) and long (80 percentile).

So we just continue to be crazy busy with the boys, work and foundation. We are hoping to do something special for the kids that are on treatment for Christmas with In the Arms of Friends. We have a lot of work to do getting ready for the new year and setting up fundraisers and programs for 2005. How exciting and rewarding it has been to be this far with our foundation. Unfortunately, we are constantly making new Treatment Journal Bags for so many newly diagnosed families up at Children's and Stephanie Bracelets for the mothers that lose their child (4 last week alone). Someday, I hope we never have to make another bag or braclet - no more kids diagnosed and no more kids dying from cancer - I hope I see it in my lifetime! Jake had to write a paragraph on what he would do if he were president. His first thing he put down was to find a cure for cancer so no more kids would suffer. Then he also came up with lowering taxes, supporting the army and lastly, stop second hand smoke! Ha - he listens to me crab about that enough I guess!

Celebrations for Josh Larson who just had his 6 month post stem cell transplant scans and they were clear, clear, clear! He also has not contracted the chicken pox that he was exposed to last week and hopefully will be able to go back to school in a couple of weeks. Also prayers for all the kids we have links on here for and the others that are still fighting, those that are losing their battle and those that are in remission. Prayers for all people fighting cancer....it's a brutal disease where the treatment at times is as bad and as deadly as the disease. Please support research for cancer financially and please go give blood. Without blood donations, cancer treatment is not possible!!!!

Have a great week! Love up those kiddos and thanks so much for checking up on us!

Love, Kellie, Steve, Jake, Brandon and Ben :~)

Tuesday, November 2, 2004 2:53 PM CST

Update On Wednesday....Well, fear came calling today. Why we have to have these continuous wake up calls to remind us that life can change in a hurry, I don't know. I get the point. Brandon woke up this morning with major pain in one of his thighs. By 7:30 he could hardly move and could not walk at all. I called Steve at work to tell him and of course we are thinking the same thing. Orthopedic pain in a limb is not something we take lightly. So I called the doctor's office when they opened and they got Brandon in at 10. I had given him some Advil, so it was feeling a little better by then, but he was still in pain. Dr. Harrison gave him a thorough check and it seemed the majority of his pain was in his thigh, but mainly when his hip socket was in motion. He told us what the possibilities it could be and of course we told him we being cancer parents jump right to is this Ewing's, Rhabdo or Luekemia? He told us he had a good feeling about it - better than when we were in this same position with him before with Jake and then sent us over to Children's for blood tests and x-rays. Brandon was such a trooper - had to get a poke in his arm and then head down to some pretty painful x-rays. We waited very nervously in radiology for Dr. Harrison to call us with the results. I was playing in my mind how I would react if he called and said there was a tumor over and over just to be ready for that moment but also trying to be optomistic at the same time. Dr. Harrison called and he said there were no tumors, no fractures and the x-rays were normal. Thank God! It was late and Brandon was begging to go to the cafeteria at Children's for lunch, so that's where we headed next before we picked Jake up from school. Dr. Harrison thinks that Brandon has a virus that has settled in his hip socket; could even be from the flu shot that he had in that same leg a week ago. He is on bed rest for the next couple of days and then we will see how it is. It may take a week or so to clear up, but hopefully in a couple of days it won't be so painful. Advil does help and it does not bother him while he is resting, so that is good. He should be back to school on Friday. I am waiting to hear the results on the blood test, but I'm sure they are fine. Nothing like a good scare to keep mom and dad on their toes!

Tuesday...Hey, Everyone! Sorry for being so long between updates. Halloween was great! I will post pics on here as soon as we get them downloaded. The boys had a great time at their parties at school and Halloween night was great. We had awesome weather and two boys full of energy and ready to hit the houses for candy. Jake and Brandon were both goulish types. Brandon said he was "a dead person" and Jake described himself as the "grim reaper". I, not being too fond of either of those descriptions, just opt to call them goulish guys. What a contrast this Halloween was compared to last. Jake last year had just finished his 13th round of chemo. In fact home health came and unhooked him from his IV backpack from chemo and an hour later we headed up to school for his Halloween party. About a half hour into the party, Jake asked if we could just go home. He was so tired and so weak. He was an army guy and the color of his skin matched the green in his costume. He had also just gotten off his cast, so his foot was at 0 strength and was sticking straight out sideways from his leg. Steve had to load he and Brandon up in the wagon to get from house to house. Much better deal this year. Sometimes I just can't believe how far he has come in a year with his recovery - it is awesome!

Jake and Brandon have taken in a couple Nebraska games this year and they really have enjoyed going - even with the Huskers being so bad this year! The weather has been great and is beautiful today - cool, but sunny - just a great fall day. Lots of time has been spent outside lately - some mean games of football (touch of course) out in the backyard with dad and the boys. Ben can't wait to join in. He is up on all fours now, rocking back and forth. You can see in his eyes how he just wants to get moving. Brandon lost his first couple of teeth. He was so cute the first night of leaving his tooth under his pillow because he really was just unsure of the whole tooth fairly coming in the middle of the night into his room and reaching under his pillow thing. So he came into my room after about 20 minutes with tooth in hand and tears running down his face, saying he did not want the tooth fairy to come. We decided to put the tooth under my pillow instead and he liked that idea much better. Much easier on mom and dad too doing the exchange in the middle of the night.

Please have Josh Larson in your prayers as he has scans coming up - 6 months it will be since his stem cell transplant - amazing and wonderful how great he is doing! Also prayers for the kiddos and their families who do not make it as there have been a lot of Caringbridge families this week saying goodbye to their little angels. And continue to pray for Jake and the rest of the kids that have won their battles that their follow up scans continue to be clear. Enjoy the week and check back soon for Halloween pics.

PLEASE DON'T FORGET TO GIVE BLOOD! IT'S ALWAYS NEEDED!

Thanks for checking in on us and love up your kiddos!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Thursday, October 21, 2004 4:17 PM CDT

Hey, Everyone! Thanks for stopping by to check in on us. All is well here. Jake had an appointment today with his oncologist and had his counts done. His counts look great and so does the rest of him. He has experienced some headaches this week, but the doc thought it was probably due to all the radiation he has had and didn't seem too worried about it. I don't know if Jake is always consistent about wearing his glasses at school either. Seems there was some confusion that since they were reading glasses, he didn't have to wear them for math or writing - ha - guess we didn't explain that too well!

We had conferences this past week and Jake continues to have challenges at school with reading and writing. Lots of stuff he missed last year. But overall he is doing great and really the problems he has with school don't shake us up too much. I'm just glad he's here to have the problems. He is loving school and gets along with everyone, so that is the most important thing. He is making progress with his reading and is almost at grade level now, so that is great news. Brandon is doing so well in school and is such a sweet kid. He is having a great year and loves his teacher as does Jake. They both had a great time on their fieldtrips. We were laughing about Jake's report card this time only having 7.5 days on there for being absent (5 of them were from our trip to Hilton Head). It is the first report card he has gotten that the absent days were only in the single digits. Usually it was 20-30 days absent! Amazing that he has kept up as well as he has, and we are so thankful he is in such a great school district (Millard) that has made sure that was the case!

Ben is doing great and is really growing. We started him on some solid foods as he is 5 months now. He is not a great sleeper especially thanks to an almost 3 week round of diarreha (sp?). Hard to sleep very long when you are pooping every hour or two. Now of course he's used to getting up and cuddling with mom. No biggie. I haven't slept through the night for the last 2 years anyway.

That's all there is to report thankfully! Please have prayers for all the kiddos out there that are still fighting cancer and those that are in remission. One of the most prolific families here on Caringbridge are in need of prayers for their little boy, Kody, as he is experiencing new tumor activity in his brain and will be undergoing surgery on Monday to combat that(www.caringbridge.org/fl/kodysstory). Please continue to pray for Benjamin Jones too as he continues with his new chemo (link above).

Please make plans to go give blood - there is always a great need unfortunately! Look for Jake's picture on the marque at 90th and Dodge - they are having a blood drive at the bank there and wanted to put Jake's pic up. Hopefully he will get to see it. Love up your kiddos and make it a great day!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Tuesday, October 5, 2004 4:52 PM CDT

Hey, Everyone! New pics are up tonight. We just got back from a week on Hilton Head Island, SC. We had a great time and somehow dodged the latest hurricane. The weather was hot and humid, so we did a lot of pool and beach time. The boys loved it and it was great seeing Jake at the pool, on the beach and the whole week full of energy and not having to adjust our plans due to his lack of energy or trouble walking like we did on his Wish Trip. All the boys did well on the plane rides down there. It was great to get away for the week.

Jake is feeling good. Seems he might have a bit of swimmer's ear, but otherwise is doing well. He has his first fieldtrip of second grade this week and Brandon has his first for Kindergarten, so they are excited about that. Ben is doing well, making more sounds and using his hands more. It's so exciting and fun to see him grow and the boys delight in all of his new tricks.

Congratulations and prayers go out to our friends and the boys' godparents, Joe and Brooke Hartnett as Brooke gave birth to their triplets today!! They are 9 weeks early, but stable and doing well as of now. We welcome little Joe, Isabelle and Ellie - what an incredible blessing!!!

We are loving this great fall weather - I don't think there is a better time of the year. Oh, I probably say that with every change of the season. They are all great times of the year!

Arms of Friends is doing well. We continue to provide new families with the treatment journal bag upon diagnosis at Children's and have gotten such incredible feedback from that. We are sponosoring a night at The Children's Museum in Lincoln (which is an incredible place). They are closing the place for us so that kids on treatment with low counts can come without the worry of other kids there to share germs with. That is this Friday night. There was an article on us in the Family Magazine that comes home with Omaha kids from school. It was a great article and we thank them very much for spreading the word about us. Our next project is to spread the word about our gift giving program where you can give gifts of money or items we need for families as part of your family's gift exchange. We always need gas and food gift certificates for our treatment journal bags among other things. If you are interested in helping us out and really making a difference in kids lives that are fighting cancer, please e-mail me and let me know. Or you can sponsor a bag as a gift to someone in honor of them or their birthday, anniversary, etc. Or your class or oganization can get involved too. We are also looking for coroporate sponosors. So many ways to help us out. Thanks so much to those of you that help us in so many ways - we really have gotten so many positive responses from the work we are doing.

Please go give blood and love up your kiddos! Thanks for checking on us and praying for Jake's continued remission.

Love, Kellie, Steve, Jake, Brandon and Ben :~)

Wednesday, September 22, 2004 10:27 AM CDT

Goodmorning! New pics are up! A warm beautiful day here in Omaha - wish it were a little cooler, but I guess we had all of our cool weather over the summer. Ha! All is well here. Jake is doing well and feeling great. Brandon and Ben are too - so not much more we can ask for!

Last week we met with some regional CEO's from the Red Cross along with some other cancer families to talk with them about how much their work means to our family. It was really neat meeting those people and hopefully making an impact on them also. Ben went to the doc last week for his 4 month check. He was 13lbs 15 oz (45percentile) and in the 75th for his height. He is so much smaller than the boys were at this point. He's just too darn cute - makes up for his being a not so good sleeper! We have all been fighting a cold with a cough and it seems it's now Ben's turn. He seems to be handling it well so far. Brandon is doing great in school and is such a happy kid. Gotta love his easy going attitude! Thursday, Steve had his birthday, so he is old now at 35. Then on Saturday, the boys' school had a bike rodeo and a blood drive. They were able to collect 36 units of blood and the kids had a great time on their bikes. Then Sundy we headed out to the 4-H campground for the Camp CoHoLo 20th reunion. They had face painting and you could do archery and paint ball - it was a lot of fun and Jake loved showing us all around the camp that he loves soooo much.

I have some pictures up on the photo page today that are still very hard for Steve and I to look at. They are Jake's school pictures from Kindergarten, 1st grade and now 2nd grade. So for us they are pictures of Jake with his tumor and all his innocence; Jake weak, tired and pale from the months of toxic treatment and Jake now - permanently scarred, but the victor from a horrible battle. It makes us so sad to see the first two pictures. We can't help but stare at that part of his head where his tumor was and wish it away or wonder how something so horrible could be inside our sweet little boy who had just started Kindergarten. The first grade picture is hard just to see him so down - no hair, eyelashes or eyebrows, that darkness to his face and that funny color to his skin. Last fall was a hard time in Jake's treatment. He limpled bad, was pretty beaten from all the chemo and had broken his leg - making everything all the more difficult. We were close to the end of his treatment, but still had so far to go and the effects from all of it were wearing on his little body. It's like we are a lifetime away from that now and you can see it on his most recent picture. He has gained so much weight, strength, stamina, color, muscle and has actually grown this year. He eats us out of house and home making up for a year of eating to get by and never getting into the clothes I had bought before he was diagnosed. Those clothes that he should have grown into last year sitting in the closet reminding me that my child was so sick. How could we ever imagine that when we got those first Kindergarten pictures, that they next set would look like they do. Thinking of those picture frames that has a space for each grade, there will be Jake's with one year of him bald and fighting cancer. Then all the remaining pictures of him with half a head of hair. How can you ever imagine that for your child? When you walk into Wheeler Elementary, there is a composite picture of all the kids in the school. In all those faces, you can pick out Jake pretty quickly. It's heartbreaking to see his little head in all those faces of healthy kids with hair. But who knows what the future holds for any of those kids -we all have incredible battles in life and maybe Jake just had his very early. Hopefully he has met his quota of misery. I look at this year's picture and see that smile and those rosy cheeks and am just so thankful. Even as sad as Jake's hair makes me sometimes (Ideally I wish he could walk away from this experience without any noticible scars, without having to put up with the teasing that will follow him now and the questions he will always have to answer. Then again I think Jake is lucky to have that noticible deformity from his treatment so people will always know of the bravery he posses; the mircle that his life is.), I am so thankful for that funny hair, those crooked teeth that will need braces, those eyes that need glasses, that skull that will need repair, the ear that may never hear again - just to have all that to fix for all the years to come becuase it means Jake has many years to come. I am so thankful to have a second grade picture. Just so thankful to have my son. Sometimes, even with the horror of last year, you can forget. Time is a healer with the loss of memory it's greatest tool. But these pictures can always bring us back and remind us that life is all too precious, the laughter of your child is all too wonderful and every little thing that goes with loving them is worth all the pain and worry that comes with it.

Please give blood - they are at a critical low point right now and some little boy or girl is out there right now, waiting in a hospital room for the nurse to bring in a bag of platelets or whole blood so that they can make it another day, through another treatment, one day closer to their next school picture.

Prayers for our friends Joe and Brooke that are awaiting their triplets. Brooke is 29 weeks pregnanat and in the hospital hoping to make it a couple weeks longer. Also, check out Benjamin Jones' Site (link above) - Miracles really do happen!

Make it a great week!

Love, Kellie, Steve, Jake, Brandon and Ben :~)

Tuesday, September 14, 2004 8:53 AM CDT

Goodmorning! Wow - what a busy week we had last week. Everyday and every night we had something going. Jake has been doing great and we were so pleased with his scans being clear, his bloodcounts being good and the worry put back in the back of our minds (or at least we try and get them back there) for a couple of months until the next set of scans rolls around. Jake had to get an IV this time with the scans because he doesn't have a port anymore. As glad as he was to have his port out 3 months ago, he was beggin for us to put it back in on the drive to the hospital (he hated to have his port poked, but hates IV's even more). There was also the "I wish I never had cancer" comment that I couldn't agree with more, but Jake did a great job with the whole thing. Of course there were tears, but he held still which is all we ask of him in those situations. He had a great time as always playing up in the clinic and we made a visit to all the great nurses and staff on the 6th floor - the staff at Children's is the BEST!!!

Brandon started his last year of Kindermusik this week and continues to tear up the soccer field. He is so fun to watch out there - all business. He loves Kindergarten. Ben is doing great - smiling all the time, taking the bottle when we need him to without a fuss anymore, rolling all over and now loving his Exersaucer! He goes tomorrow for his 4 month check. He is a lot smaller (skinnier)than the boys were at this point. He is tall, just very lean. Still has all that hair and the power to attract attention from Jake and Brandon with the simplest of whines.

We went to the Candlelighters Picnic (chilhood cancer support group) on Thursday and that was a lot of fun. In the Arms of Friends got some clowns to come and the clowns donated their time there that night. Thank you Carrotop and Podunk! Friday night was Wheeler Elementary's night at the Millard West Wildcat game, so we all went to that. The boys had a great time hanging out with friends as did mom and dad. The boys went to the Husker game on Saturday with Steve, Grandpa and Joe. They boys were into the game and cheered hard despite the Husker loss. (These are rebuilding years, right?) Then Sunday some of us cancer moms and In the Arms of Friends board members got together to put a bunch of the journal bags together that we give out to newly diagnosed families up at Children's. They had a lot of kids diagnosed up there this week, so they were in need. Please have prayers for the little warriors out there fighting cancer and especially for those newly diagnosed and their families. It is so devastating to learn your child has cancer and then to learn what the course of treatment will be. Words cannot describe.

So that's the update around here. Jake gets stronger everyday and we are so thankful for his remission. Please go give blood as levels are still so critically low! Love up your kiddos!!!

Love, Kellie, Steve, Jake, Brandon and Benny :~)

Thursday, September 9, 2004 5:12 PM CDT

Looks like all scans are clear!!!! Will write more when I have more time.... Kellie :~)

Thursday, September 9, 2004 5:12 PM CDT

Looks like all scans are clear!!!! Will write more when I have more time.... Kellie :~)

Friday, September 3, 2004 11:14 PM CDT

Happy Friday! Wow, are we glad we don't live in Florida anymore! We would have evacuated so many times this year in a lot of the places we lived there (On the Tampa Bay, Cocoa, Vero Beach, Casselberry and Lake Mary). Prayers to those families there in Florida that this Hurricane will keep losing steam and not do much damage.

We had Jake's appointment today with the neuro-opthamologist today. He did a thourough check of Jake's eyes and all the structures of the eye and the brain that controls that function look good. He didn't think there was any radiation damage. Jake did show a little farsightedness, so we got a prescription for glasses that he will use while reading and writing. Doc said that chemo can change the make-up of the eye, so he could have dryness of his eyes that is aggrivating things and making him sensitive to light and giving him the fatigue. We will try some drops along with the glasses to see if that helps Jake out. He did well this week in school without any complaints of headaches, so we are happy about that.
Jake will have his scans next week on the 9th. Prayers for continued good results always appreciated!!!

The Huskers have their first game of the year tomorrow, so Steve has been busy getting ready for the tailgate. I am going down with Ben just for the tailgate and will come home to watch the game. Thanks to the Hoies for having the boys over tomorrow while I am gone! Our friends from Cedar Rapids, Shawn, Missy and Cole Gilbert will be in town for the weekend, so we are looking forward to that! Hopefully us girls can get some shopping in.

Not much else for news, thankfully. Please pray for all kids with cancer, and for those families who have lost their children to the beast. Give blood and love up those kiddos!

Love, Kellie, Steve, Jake, Brandon and Ben :~)

Friday, August 27, 2004 11:31 PM CDT

Monday - New Pics Up! Thanks, Jeff!!!

Hello! Thanks for stopping in to check in on Jake. I am still so amazed at how many still follow this site. I make no apologies for Jake's site becoming boring with the news of just normal life - we love it!

The first two weeks of school are under the boys' belts and they have gone well. They both have fantastic teachers and have been so happy going to school everyday. I am amazed this year at how easy it has been to get there on time. Last year was such a struggle and I realize now that was so because it was so hard getting Jake's ole' tired chemo body up and out of bed. And I thought it was me! Ha - there is hope yet! Jake has complained twice since starting school that he has had a headache. Of course this is alarming to Steve and I as that was his initial symptom that started this whole thing, but we have to keep the worries in check. Both times it was during writing assignments in school. Jake seems to be having a problem with his eyes. He has been especially photosensitive outside and under certain kinds of inside lighting this past year. I always thought it was from chemo, but his doctor thinks it may be some scatter effect from radiation. Either way it hasn't gotten any better and he seems to really fatigue with work that he has to focus and concentrate on. He gets so frustrated with his writing that that in combination with the eye fatige seemed to trigger the headaches. He went for his regular monthly check-up on Thursday with his oncologist and she referred us to a neuro-opthomologist to get a thourough check of his eyes. His eyes have not been checked in 2 years, so it will be good to get them looked at. We go there next week. Otherwise she thought he looked good. We scheduled his next set of scans which will be Sept 9th. These will be his 9 month post treatment scans.

We were so lucky last week to have my cousin Diana and her daughter Erika here for a visit. They came up from Lubbock, Texas to see us, and the boys had such a great time. Ben was in heaven having two ladies to dote over him and hold him while he napped. It was so great to see them as always - definitely a lift for the spirits around here having such loving family close.

We had a night at the Omaha Royals Baseball game tonight with the Candlelighters families sponsored by In the Arms of Friends. Each family got free tickets courtesy of Mark Nasser and the Omaha Royals and snack money from In the Arms of Friends. It was a great night and so fun to spend with other cancer families - some on treatment and some off. Perfect weather, great fireworks following the game and lots of smiles.

Brandon has started soccer and it is so fun to watch him this year. He is really into the games and has been scoring lots of goals. Ben is doing great - Mr. Activity these days and just such a happy baby.

It has been great having Jake start school and hearing all the positive comments about how good he looks. For us the change has been gradual, but for those that have not seen him in three months, it's dramatic. Jake has gained 7 pounds in the last 8 months, his energy and walking are so much better and gone is that gauntness of his face and skeletal look he had to his arms and legs. We are celebrating everyday how good it feels to be through with treatment and healthy once again!!!

And then with that joy that we feel comes the suvivor guilt that emerges when your child is doing so well and others lose their battle. Jacob Coates died this week and his funeral is tomorrow. He was 4 and such a fun little boy with such an awesome family. Goodnight, Sweet Jacob, Goodnight. (www.jacobsjourneys.com)

Continued prayers for all these little warriors with cancer. Please visit our friends and leave a little message in their guestbooks. It really means a lot. Thanks so much for coming to visit Jake and continuing to root him on. Also, please go give blood. The levels are citically low!

Have a great week and love up those kiddos!
Love, Kellie, Steve, Jake, Brandon and Baby Benny :~)

Monday, August 16, 2004 10:03 AM CDT

PLEASE, PLEASE GO DONATE BLOOD! THE LEVELS IN NEBRASKA (AND PROBABLY EVERYWHER) ARE AT A CRITICAL SHORTAGE RIGHT NOW! YOU CAN CALL 271-2588 TO MAKE AN APPOINMENT! DON'T THINK OTHERS WILL DO IT, BECAUSE THEY AREN'T AND THE NEED IS GREAT!

Goodmorning! Well, I am here at home with only 1 boy with me and it sure is quiet around here! Today Jake and Brandon started school. Jake woke up early today and ran into our room as excited as could be. Thank goodness, because his excitement helped ease the sadness of mom and dad and made Brandon feel comfortable about it being his first day of Kindergarten. We got ready, took all the pics - check out the photo page - and headed up to school. Brandon just lined up and went to his room like he had been doing it all along, taking the whole thing in stride. Jake bounced up there and into his room as happy as could be. Steve and I, with our tears, walked back to the car. So many emotions with Brandon, who was our baby for so long, not being home with mom anymore; and then with Jake and all he has been through and how incredible it is that he has even made it to second grade. We are so happy for both of them and excited for what the year will bring, but also sad to not have them at home and then always fearful for what the future holds. I think Steve and I both go back to thoughts of Jake starting Kindergarten and how that tumor was there, growing and killing him and how it was that year that it all started. It's hard to look back at pictures from that fall and not see that tumor - like here is a picture of Jake and his tumor - it's hideous presence still so biting and painful to think about. But this year, we start anew. After two years of being the sick kid, Jake starts this year healthy and getting stronger everyday. Both boys will be in school without worries of when the next chemo is, what Jake will miss on the days he is out and the constant juggling of schedules. He and Brandon can go to school, play with their friends and love just being 5 and 7 year old boys.

The last week of summer was busy with the boys going to soccer camp everyday. It was good practice for all of us to get up early and be there at 8. They both loved it and Jake did pretty well with his stamina and running. Some days he would limp after camp and others he seemed fine. He showed fatigue and had some soreness, but overall, his ole' chemo feet did pretty well. The weather remains very cool (low 70's), so there wasn't any swimming or sprinklers in the game plan, but we stayed busy and had a fun week.

Ben is doing well and I'm sure he is going to wonder where his entertainment went with the boys being in school. I can get things in order here at the house and get busy with my business and the foundation. Fall is the busy season for selling jewelry (I sell Premier Designs Jewelry), so I have plenty to do. Our foundation is sponsoring a night for cancer families at an Omaha Royals Baseball game this month. With the last fundraiser being so successful(we raised $10,000 - thank you to all that helped and came), we will be able to continue our Treatment Journal Bag program for all new families diagnosed at Children's and plan fun events like the baseball game and continue to buy things off of the clinic's wish list. Very exciting!

Please continue your prayers of remisssion for Jake and so many of our friends (Jake's next set of scans are in Sept), and please pray for our friends that are losing their battle - Benjamin (link above) and Jacob (www.jacobsjourneys.com). Also prayers for our friends the Novaceks who lost Ryan's grandma and his mother was badly injured in a car accident last week; and for the boys' Godparents, Joe and Brooke Hartnett as Brooke is 24 weeks carrying triplets! Also prayers for another friend of ours, Ethan, whose mom just e-mailed me and told me he has relapsed with his brain tumor. Please go give blood or platelets also!!! Another friend of ours,little Blake Pelster (link below) needed a platlet transfusion last week and there weren't any in North Platte or Omaha and he had to wait a couple days for them to be shipped in! Very scary, so PLEASE go give - supplies are very low right now.

Have a great week and love up those kiddos!

Love, Kellie, Steve, Jake, Brandon and Ben :~)

Saturday, August 7, 2004 4:57 PM CDT

New pics are up! Hi, Everyone! All continues to be well here. The boys are great and loving the days they have left of summer. Somehow we have had the most beautiful days of 70-80 degree weather here. Usually these are the dog days of summer - hot, humid and little rain. Instead everything is green and beautiful and in the 70's. What a blessing this weather has been! Jake learned to ride a two wheeler this summer, so he is prefecting his skill with that. He has been wanting to try it for quite sometime, but it was not recommended by his nuerosurgeon after his surgery. Last summer he was not ever really feeling like it as all the chemo and radiation was sucking his energy and physical confidence, but this summer is a different story. Funny as I was just writing that I was thinking about him last summer and his horrible burn from radiation, spending so much time in the hospitals and just how drained he was getting from the whole thing. His teacher, Mrs. Sobzcak, that Millard provided during his treatment had such a hard time with him over the summer working on coins and their names and values. He really had "chemo brain" at times and it really showed in his memory of certain things. Wow - amazing the farther we get from treatment, the more I forget just all he went through. Good thing I have this journal so we as a family and someday Jake as an adult can look back and try and fully grasp what a miracle he is. Hopefully someday it will give him a spectacular outlook on life and he can reap the benefits of knowing what it is to "live like you were dying." I love that song by Tim McGraw. It really brings back so many memories for both Steve and I of when Jake was first diagnosed and just how horrible and wonderful that whole year on treatment was.

Jake played his last baseball game for the summer today. Just in the last two weeks, he has been able to take almost full strides when he runs - the improvement everday is still sometimes so amazing. He has come so far. It feels so good to continue to see improvement in his energy and abilities. What a celebration everyday things become still with all three boys - oh may we never lose this appreciation for all of it and may we never have a reason to have that appreciation reinforced (aka - please, Dear God, let Jake's scans continue to be clean). Of course the boys are not perfect and many times they drive us crazy with their fighting and whining, but those smiles and accomplishments are just so cool.

Ben is growing and changing daily and will be three months in a week! I forget how quickly they change and add new things at this age. He is sleeping good - about 7 hours at a time at night and is such a smiley boy. Rolling over both ways, discovering his hands, giggling - all of it delights both Jake and Brandon. Whenever Ben puts on a new outfit or hat or does something new, I hear, "Mom, take a picture of Ben. Come see what Ben is doing." Jake and Brandon are making sure that Ben does not fall prey to there being no pictures of the third child.

We took the boys to the dentist this week. It was the first time in two years Jake had been because of the risk of infection with having his teeth cleaned with a port. With Jake's port out now, we were off to the dentist. Surprisingly, Jake had not one cavity and the hygenist said his teeth looked pretty good. We held off doing any x-rays to see the status of his permanent teeth for now as the dentist felt like he didn't need any more exposure to x-ray than he already gets. We won't do anything about his teeth until he is 11 or 12, so we'll just wait until then to see where we stand. Like one of our nurses said, you could probably look on Jake's MRI's to see his teeth. Ha! Never thought of that!

Good news to report with Josh Larson - his 100 day post tranplant scans were clear! He now joins the rest of us with 3 month scans and continues to do so well. He will be a little miracle going to Kindergarten this fall!!! Please continue your prayers for the families of Jacob and Benjamin as they cherish the limited days they have with their precious little boys. Benjamin's link is above and Jacob's is www.jacobsjourneys.com. Please have prayers for all the little warriors out there with cancer!

Thanks for checking in on us - your support and friendship is so appreciated!!! Love up your kiddos and please, please GO GIVE BLOOD!!!!

Love, Kellie, Steve, Jake, Brandon and Ben :~)

Friday, July 30, 2004 5:55 PM CDT

Hey, Everyone! All is well here and the hustle of the past week culminated last night with a great fundraiser for In the Arms of Friends! We had around 600 people show up for dinner and had a great raffle. Thank you so much to all the people that donated raffle items, supplies for the dinner and their time! A special thanks to our church, St. Andrew's Methodist for all the help and for hosting the event. Thanks too to Carrabba's restaurant for the great food and the opportunity to work with you. It was a huge success that could not have been possible without the awesome work of our In the Arms of Friends Board (Steve, Liz and Jay Larson, Anisa Hoie, Christy Hogan, Julie Friend and Amy Yarnell) and volunteers!!!! Lastly, thanks so much to all the people that turned out, sold raffle tickets beforehand and bought them that night! All of it just means more families with children diagnosed with cancer will be helped this year!!! There are pics up of the fundraiser, so check them out.

Jake, Brandon and Benjamin are doing great. Jake is feeling good and keeps us laughing with all of his amazing comments. He and Brandon are getting ready to go to a soccer camp and Jake's baseball is just finishing up. We went school shopping this past week, and I can't believe my baby Brandon will be off to school this year. He is going to love school. Jake loves it for the social part, but I really think Brandon will love it for the learning. We are going to spend these last couple weeks of summer hitting all the museums and having fun, fun, fun!

I just thank God everyday for my three boys. What a special blessing children are. This morning there was a nice, gentle rain coming down. I let Jake and Brandon go out in their jammies and just play and play in the rain. The sound of their laughter was so awesome - I could just soak up the moment of them just loving the feeling of the rain and loving each other as they shared the experience.

That feeling is why my heart is so heavy tonight with the news of our friends that have learned there is nothing more that can be done for their 3 year old little boy named Jacob. They were in Texas the past couple of months getting a bone marrow transplant to try and rid Jacob's body of Luekemia (AML). It was not successful and they have flown back home to Omaha, and Make A Wish quickly arranged for him to take his Wish Trip to Disney next week. Please have prayers for Jacob, his mom, dad and two older brothers as they spend these next couple of weeks just loving Jacob and enjoying the time they have. I cannot wrap my mind around the grief that they must feel. I also cannot begin to wrap my mind around how a three year old little boy that is fine one minute can be so sick with cancer the next and then dying the next. What sense does this possibly make? This beast of Childhood Cancer just grows so insidiously and quietly in our children until it is hard to control and takes the most toxic of medicines to stop it. Hopefully some day we will have all the right meds that can make the beast disappear while still leaving the child whole. Jacob's Site I wish I never had this part in Jake's journal where I ask for prayers for our friends. All we can do is just keep working for better things to come in the future for ALL kids diagnosed with cancer. Also please continue your prayers for Benjamin Jones and his family as they spend his last days with such a wonderful spirit of love and family (link above). Don't forget the Larsons's either as Josh has his 100 day post transplant scans on Tuesday (link above).

Thanks for checking in on us. It's great not having a lot to write about as far as Jake is concerned. It's just great having him be a normal kid - well, as normal as Jake can be :~). Have a great week, give blood and love up those kiddos!!!

Love, Kellie, Steve, Jake, Brandon and Benjamin :~)

Thursday, July 22, 2004 4:46 PM CDT

Hey, Everyone! We have our Jakieboy back!!! We picked him up from camp on Wednesday and he had such a great time. He had great counselors this year and went on and on about all the stuff he loved - which was just about everything. Thanks so much to all the awesome people that donate and volunteer for Camp CoHoLo - such a great experience that Jake will always look forward to!

Make sure you are watching Channel 7 tomorrow (Friday) night at 10:00 as Julie Cornell is going to feature In the Arms of Friends and the boys and their stories as part of her Diary series. Julie was so nice to spend almost 2 hours with us today listening to our story and hearing about our foundation for childhood cancer. Thanks so much to her and Channel 7 for doing that for us.

Julie also featured the fundraiser that is coming up July 29th. Tickets are still available and will be available at the door. If you can't come that night but still want to help families and kids, you can purchase raffle tickets. click here to see the awesome raffle prizes we have available!! They are $2 each or 6 for $10. You can just e-mail me with your raffle order and I will get your name on the tickets. Thanks so much to all the great donations we have gotten for our raffle and for our dinner!!!!

All else is well here - looking forward to the cool weekend! This weather is crazy, but we will take it! Please say prayers for the Larsons as Josh (link above) approaches his 100 day post transplant scans August 3rd. Also continue your prayers for Benjamin Jones that he continues to feel good and be able to enjoy the days he is given Benjamin's site There is also Jacob Coates (3-AML)our friends from Omaha that had to travel to Texas for a bone marrow transplant as they have been given bad news about Jacob's bone marrow status Jacob's site. I could list site after site on here of kids we follow. Unfortunately the web is filled with stories of kids fighting this battle against cancer. Please keep all of them in your prayers and remember them when the trivial things in life get you down or leave you worried.

Thanks again to all the people who have donated and purchased raffle and/or dinner tickets - your support has been great and will go a long way in helping kids like Jake, Josh and Jacob that pass through the halls of the oncology clinic at Children's. Together we can make that journey happier and hopefully someday one that always leads to a cure. Have a great weeekned!

Love, Kellie, Steve, Jake, Brandon and Benjamin :~)

Monday, July 19, 2004 10:55 AM CDT

Hey, Everyone! Lots of great news to share! First you will notice the new pics on the front here and on the photo page! Jake is at Camp CoHoLo right now and having a great time I'm sure! They post pictures every night of the campers (how much do us parents missing our kiddos like crazy love that?). We have heard through the grapvine that Jake is having a great time - hanging pretty tight with Josh and Charlie - and being the consumate cheerleader to everyone! Oh to be a fly in that campground. Of course, back here at home base, we are missing him like crazy. We have only been a family with three kids for 2 months, but man it feels weird to just have the two. Of course when you have almost lost a child like we have, you can't help but have thoughts of "this is how it would be without him." We are better this year than last, but still missing him. Brandon really had a hard time yesterday. He just hung around Steve and I most of the day moping. Then last night I found him in Jake's room, hugging Jake's blankey and sobbing. I asked him what was wrong and he just cried, "I miss Jake so much." It was heartbreaking. How do families that lose a child handle the grief of their other children? That would be the hardest thing. I asked him what would make him feel better and he said, "If you and me did your exercise video together." Ha! Nothing like a little Pilates to make a 5 year old boy feel better! He is good today, just asking when we are going to pick Jake up A LOT.

Saturday we had a very special treat! Tanner (link above) from California - Jake's skull sister (she had Ewing's of her skull too) and her family stopped to see us! They are traveling cross country and made us one of their stops! It was so great to meet them in person - what a great family. We had breakfast together and then they came to Jake's baseball game and then stopped over at our house for a while. It was a very special morning and we are so thankful to them for stopping to meet us. Tanner is a cutie and is just starting to get her hair back as she just finished treatment. For those of you that live in Omaha and think this is such a boring place, they thought Omaha was beautiful - they loved how green it was and all the trees and rolling hills and beautiful neighborhoods. Amen to that! Thanks, Lusks for coming to visit us!

Don't forget about the city wide blood drive on the 21st and our fundraiser that is coming up on the 29th. We have more tickets to sell, so please, please e-mail me with your ticket order. If you can't be there, you can order raffle tickets too - we have awesome prizes - thanks so much to all who have donated to our raffle - amazing the great stuff we have! You can see details about the dinner and the list of the great raffle items by clicking on the In the Arms of Friends link above. Please help us out by buying tickets - we need all the help we can get! Thanks to Deck the Walls for the latest donation for our raffle- a Nebraska print - and to Prairie Mechanical for their generous donation of $150 to help us purchase pop for the dinner!!!!!

Hope everyone has a great day! Thanks so much to everyone for checking in on us! Don't forget to give blood - nationwide there is a critical shortage right now! Prayers for a friend of ours who is in Texas and just had a bone marrow transplant - he is 3 and his name is Jacob. They have gotten some bad news about his bone marrow status and need your prayers - visit them at www.jacobsjourneys.com. Continued prayers for Benjamin Jones too! www.caringbridge.org/oh/benjaminj.

Love, Kellie, Steve, Jake, Brandon and Ben :~)

Thursday, July 15, 2004 10:27 PM CDT

New pics are up on the photo page!

Hey, Everyone! Thanks for checking in on us! We are all doing great!

Jake went to the oncology clinic on Wednesday for his usual check-up and blood counts. All were great and he is ready to go to camp! He goes on Sunday morning and then we will pick him up Wednesday morning. He is so psyched to go! Last year he was in for chemo for a week, got out of the hospital on Saturday and went to camp on Sunday. He was on lots of meds, had creams to put on his head for his radiation burn, had to have his shots and probably felt rotten. This year he is so glad to be able to go without any medication and feeling so, so much better. They take such good care of the kiddos out there at Camp CoHoLo, so he had a great time last year, but this year he will just be going out there a different kid - strong and cancer free!!!!

We are selling raffle tickets for the fundraiser like crazy! How exciting all the support we are getting for our foundation's fundraiser!!! Please just call or e-mail me if you are wanting raffle tickets if you can't come that night or want to get dinner tickets. There is a partial listing of items we have for the raffle on our website (see the link above), but we are getting more things all the time, so we will try and keep up. Just today Amy Groff and the great people she works with at Williams Sonoma at Regency brought over a Williams Sonoma Ice Cream Machine complete with toppings, bowls and a scoop! Plus Cory Juma of State Farm Insurance just brought over one of those great Mickey Mouse Boom Boxes! People's kindness is so awesome! Dinner and raffle tickets will be for sale up to the night of the event and during it! Remember it is Thursday, July 29th at St. Andrew's Church on 150th and Maple starting at 5:45. Thanks again to Carrabba's Restuarant for doing this fundraiser with us!

The public service announcement for the blood drive on July 21st is running on KGOR - I just heard it tonight. It almost seems like I am hearing someone else's story of their 7 year old with cancer as I'm listening. It's still so unbelievable to believe one of our children had cancer. Jake's part in the PSA is so sweet - he says that because of blood donations, he is able to play with his brothers and go to second grade this fall with his friends. I cried after hearing his little voice say those words - we are so blessed to have him going to second grade this fall and ever so thankful. Go give blood - July 21st 6:30am-6:30pm at the Heartland Chapter of the Red Cross off of 84th and Center.

Jake continues with baseball and of course loving every minute of that. Brandon is doing great and having a great summer. Ben is getting big and starting to get pudgy. I love this stage when they start to get all that baby fat on them - too cute! He is cooing like crazy these days and that huge open mouth grin he gives is a heart melter! Both boys are so great with him, but I am still amazed day to day with how Brandon just dotes over him constantly. He will just talk and talk to him and wants to help with everything - he is such a sweet kid. He looks like such a brut and, boy, he can be, but he is also just one of the most compassionate little boys. A big sweet teddy bear.

Well, we just keep working on the foundation and then of course on our businesses,the house, the boys and the days never seem long enough. But what a joy that is to have these days to be so busy and not be in the hospital. When I think I'm having a hard day or that there is just too much on my To-Do list, I just have to be thankful that that list is not filled with meds to give, doctor appointment to be at or weeks to spend on the 6th floor of Children's Hospital (as much as I love that place!) Please have in your prayers all the sick kiddos out there that are fighting so hard for their lives against cancer and other diseases. There is really no rhyme or reason to kids being so sick, having to fight so hard and then live with the lifelong consequences of that fight. We just have to help those in the trenches, grieve for the ones that don't get an Earthly healing and pray hard for the ones in remission that they stay that way forever.

Hope you all have a great week! Give blood, give time and love up those kiddos!

Love, Kellie, Steve, Jake, Brandon and Benjamin :~)

Wednesday, July 7, 2004 11:11 AM CDT

Hello! There are new pics on the photo page from the 4th of July - check them out. We had a great holiday and a very busy weekend. The 4th of July is our favorite holiday. We buy tons of fireworks as the boys are so enamoured with the whole thing. The look on their faces as they enter those firework tents is nothing better - complete joy and amazement! We had 29 people over here for the 4th and Steve did a great job on the grill. The weather was great - we have had such a mild, wet summer. Everthing is so, so green. Today our high is 77, but the heat is upon us tomorrow. The boys are excited because it will finally be warm enough for the pool!

Jake and I were on the radio this morning - KGOR plugging a city-wide blood drive that is coming up July 21st. Jake is on all the posters and t-shirts dressed in a leather jacket, sunglasses and posed by an electric guitar. It's Rock and Roll up Your Sleeves! It goes from 6:30 am to 6:30 pm at the American Red Cross Heartland Chapter just 2 blocks South East of 84th and Center. Please go and give that day (you get a free t-shirt with Jake's face on it) or call them to make an apt. for another time - blood supplies run so low in the summer. Don't think others are going to do it - they aren't - and so many little kiddos out there with cancer rely on it to save their lives everyday!

Another good cause to point out - The In the Arms of Friends Foundation Fundraiser is fast approaching! We have been busy securing items for our awesome raffle and organizing help and getting tickets sold. Please call or e-mail us to get your tickets as they are going quickly and we will be selling them at our churches soon. We are taking walk-ins that night too, but if you know you are coming, buying tickets beforehand would be most helpful to us. We have some great things already for our raffle including a diamond and white gold pendant from Borsheims worth $350! Tickets for the raffle are $2 each or 6 for $10. Julie Cornell from Channel 7 and Pat Persaud from Channel 6 are both scheduled to do a piece on our foundation and the fundraiser, so I will let you know when those will air. Thanks so much to those that have offered to help that night, purchased tickets already and have donted to our raffle! It should be a fun night with great food from Carraba's! We started our bags for newly diagnosed families at Children's. Every family diagnosed at Children's gets a nice, nylon bag with our logo, a treatment journal to organize the papers and info. they get for their child's treatment, toys for the child, a disposable camera, kleenex, hand gel and then most importantly $60 worth of gift certificates to restaurants around Children's and a gas card for the many miles they travel getting there. The first bag that was given to the family was met with tears and many thank you's, so it feels so good to be able to have that program going. We are also working with the Med Center to help them with their lack of toys in their Oncology Clinic and continue to chip away at Children's Oncology Clinic's wish list - a new AV Cart was the last thing we purchased for them. It's just plain fun and we have an awesome board and a great group of people that are helping! In Sept we are having another garage sale to raise money for research, so please keep those items you want to get rid of for that!Ok, enough of my plugs...

Jake is feeling great. His incision from where he had his port removed is healing nicely. He was not even one bit sore from the surgery by the next day. We saw this weekend with him being with a big group of kids on a couple of occasions that he just has to be so careful. You don't realize until you see him in that situation how fragile and prone to injury he is. He just has to be careful of his body as he recovers this next year. It's easy to forget this far out of things how much he went through and how long it takes even a strong minded little kid to recover from all of it. He has a baseball game this Saturday which he is so pumped for as always. He just asked to watch the DVD his Uncle Jeff made of all the pictures from his year in treatment. He has been so reflective lately about the past year. Ever since the comment about wanting to erase the cancer part of his life when he got his port out, we have heard more comments about how hard it all was. We just have no idea how much it affected him and I suppose we never will. "All these pictures are me with normal hair when I was 5, " I just heard him say to Brandon.

Brandon and Ben are doing great. They both get bigger by the day! Brandon is so built - the kid was made for football. I keep hoping he picks piano or golf instead - save himself from all the aches and pains later on and his poor wife having to hear about them - not that I don't love hearing about all Steve's aches and pains. Ha! Ben smiles with the biggest open mouth grin now - he is trying so hard to let out a little chuckle. Jake and Brandon squeal and laugh with pure delight when he flashes a smile their way.

Please keep checking on our friend Benjamin as he makes his journey. I know his parents appreciate people writing in his guestbook and saying they care. Benjamin's Site

Also, we have a new addition to our childhood cancer awareness bracelets - a great new keychain - it could really be a keychain for any cancer fighter - each bead on it means something and then there is a silver ribbon at the end of it - so cute! Click on the Memory Market site or our website above to go to it and order. Thanks, Amy Yarnell, for doing such a great job with those bracelets and keychain!!! Oh yeah, I said no more plugs - I can't help it! It's all for a good cause!

Everyone, have a great week, go give blood and love up your kiddos! Thanks for checking in on us and cheering us on-you will never know how much it means to us!

Love, Kellie, Steve, Jake, Brandon and Benjamin :~)

Tuesday, June 29, 2004 6:07 PM CDT

Hi, Everyone! Thanks so much to all of you that have been visiting our friend Benjamin. He is starting to have mild symptoms of his tumor growth, and I know the days ahead will be so hard for him and his family. Please keep up your support for them - your messages are so awesome! Benjamin's Site

Jake had his port removal surgery today and is doing well. We got there this morning after taking Brandon to the Novacek's house. We took Ben and our great bbsitter Chelsea to watch him while we were back in the outpatient surgery area. Jake was a little nervous this morning, but he was so excited to be back at Children's. He was a hoot with all of his comments to the staff - "Can you help me with this, Laurie, I am not familiar with this remote control." The recovery room nurse told us that he was telling her all about the surgeries he has had and then told her, "Well, that's just life." He also had me kiss his port before he went into surgery and decided the thing needed a name. At first he thought "Pat" was a good name (Pat the Port), but then decided to make it more personal and name it "Jake."

This port removal is a big milstone in his treatment. For six months he has been cancer free and Steve and I marvel that we are at this point. We both remember the day he got his port and we were told of his treatment protocol while he was in surgery. I remember wondering how we were going to handle being in the hospital every three weeks and how our sweet little boy would begin to handle such a rigorous treatment. It was absolutely horrifying, and I look back on it now and wonder how we did it. I was nervous and not liking letting Jake go into surgery today and was thinking I must have been on pure survival and automatic mode to handle the multiple surgeries and times he was put under anesthesia those first couple of weeks around diagnosis. The whole thing seems a blur. It was only after his surgery today that I let myself celebrate a little with the thought that Jake had won. We are always so cautious in saying that and believing it, but today I think both Steve and I let ourselves go there for a little while at least.

When we were getting ready to go home, he told us (the nurse, child life specialist Laurie and Steve and I) that he hated his life. We were all completely shocked as he had been so happy during the whole visit. We asked him why he said that. "I just wish I could rewind my whole life and take out the cancer part," he stated so sadly. It was hard not to want to cry and for once I was at a loss for words. But our good friend Laurie saved the day and all our hearts with, "But it's over now, Jake, and you won and you don't have to worry about that anymore." Thanks, Laurie for saying what we all needed to hear. His comment was a brief glimpse into the feelings of a little boy that was at the close of a difficult journey. He never said that during treatment - it was almost as if it was something he could not speak until it felt safe enough that it was behind him to say it aloud.

On the way home today, Jake insisted that we had to go to Valentino's - "I'm hungrier than I have ever been in my whole life!" he said. When we get there, he is looking as white as a sheet, but still insists that he needs to eat and he feels good enough to do just that. Of course after a couple of bites of his favorite ham pieces, he throws up (not the first time he has thown up in Valentino's this past year). We left and he came home and rested on the couch for a couple of hours. Now he is feeling good - a little sore, but overall feels good. He likes looking at himself in the mirror without the tube in his neck and the port sticking out from under his skin in his chest. "I look human again, Mom," he says. It does feel good for all of us the way he looks - healthy, strong and with cancer behind him - hopfully forever.

Thanks for checking on us and thanks to Chelsea and Jennifer for helping us today by taking care of the other two awesome boys that bless this family! Everyone have an awesome week - we are looking so forward to the 4th of July - our favorite holiday!!!!

Love, Kellie, Steve, Jake, Brandon and Ben :~)

Tuesday, June 22, 2004 9:41 AM CDT

Hey, Everyone! Thanks so much to those of you that have been visiting Benjamin Jones' site and writing messages to them. It really means a lot to know so many people are reading and I can only imagine as they lose their little boy how much more it means to know so many people care. Please keep visiting and signing their book Benjamin's Site.

We are all doing well here. Jake has been feeling great. He is busy with summer school and Vacation Bible School this week too for both he and Brandon. Next week he is scheduled to get his port removed. It's an outpatient surgery, so he will be home that same day. He is ready to have it taken out. He has been all talk lately about Camp CoHoLo that is coming up in July - I think I hear, "How many days until camp, Mom?" now about every hour.

As you can see from the pics on the photo page, he was a ring bearer in the wedding of one of the nurses from the 6th floor at Children's. What an honor for all of us for Amy to ask Jake to be a part of her special day. The boys had a great time dancing with all nurses that they love so much. There is a new pic on the photo page too of Jake from his first baseball game. He was so excited to play and had such a great time. He is so focused and serious about the game and takes pure joy in every minute of it. It's so great seeing him be able to play this year. We take none of it for granted.

Ben is doing well. He's extending his nighttime sleeping now to 4-5 hours at a time and even went 6 hours the other night! Much to my amazement, the boys are still so into him and now that he is interacting more and even starting to smile, their delight in him has hightened.

Remember our In the Arms of Friends Fundraiser that is coming up on July 29th. Carraba's Restaurant is supplying the food and tickets are starting to sell, so please contact me for your tickets and reserve your spot. We have some awesome people donating items for our raffle also. If you or your business would like to donate, please let me know. You will get your name acknowledged on the website and in printed material at the dinner.

Thanks so much for checking in on us! Please keep prayers for all the other kids fighting so hard against cancer. Cameron Miller has very important scans tomorrow, so special prayers for him. Make it a great day and please, please make an appointment to go give blood - supplies run so low in the summer!

Love, Kellie, Steve, Jake, Brandon and Ben :~)

Monday, June 14, 2004 11:50 PM CDT

Wednesday, June 16th - new pics up on the photo page!

Hi! It's late and it seems these days, that's the only time I find time to get anything done. The boys eat up the day's allotted time and we play and play until the last bit of sunshine says goodbye. Gotta love the summer days that seem to last forever and bring magic in the evenings when there is a break from the heat and everyone is home to enjoy it and each other. How precious these days and nights are and how sad it takes a story like the one of our friends in Ohio that are seeing the number of days with their precious child slip away with each sunset to really feel it's magic. I have had Benjamin Jones and his family in my mind so since they found out that the sunsets they share with him are not to last much longer than the summer itself. His mom has always been a source of support for us and remains so in her beautiful journals that she has written since Benjamin's relapse. It's such an inspiration as to the power of the human spirit when a mother writes of her conversations with her 7 year old son about heaven and the people who will be there waiting for him when he arrives, how long it will be before they see each other again, what toys he is designating for his little brother and how they fill their days with laughter before the sun sets to remind them of the passing of another precious day with their child here on Earth. If you really want to know true love and strength and spirit, please visit Benjamin's site and give up your worries to know that life is too precious to waste on the stuff that just doesn't matter. You will find in their story too the inspiration of why we started a foundation for Childhood Cancer, why we are so nervous on the three month scans, why our summer nights last so long and why I am still up trying to get the stuff that really doesn't matter done at midnight. Our sons walked the same path and now have taken different forks in the road. I pray that Jake's path never leads us down the one Benjamin and his parents find themselves unwittingly taking, but also that I would handle such a situation with as much life as his parents are. Please visit them and offer your prayers and words of support in their guestbook. So hard to have much else on my mind tonight. Just thankful for the beautiful children in my life and all the sunsets we have to share in the future. Benjamin's Site

Love, Kellie :~)

Tuesday, June 8, 2004 3:44 PM CDT

THURSDAY NIGHT - All scans are CLEAR!!! Thank God for remission!

WEDNESDAY - New pics up on the photo page!

Hi, Everyone! Well it has been a great week. Ben is doing great - sleeping at 3-4 hours at a time at night and being a relatively easy baby. We spend lots of time on the couch and in the rocker nursing and overall things are going really well. Thanks to all of you that have made us dinners, sent gifts and cards and left us messages!

Jake is feeling so good. He has scans this Thursday the 10th. This will be the 6 month mark of remission. Please have him in your prayers for that to continue. Since school has ended, his walking has gotten so much better - much needed rest for those poor feet. We had his hearing tested last week and he still has normal hearing in his radiated ear, so we were happy about that. He was supposed to have his first baseball game this past Saturday, but it was rained out - one sad little boy about that. This Saturday he is in his favorite nurse from the 6th floor's wedding! He is so excited to be a ring bearer for Amy who is half of the nursing team he refers to as his "dream team". After the wedding on Sat night, we will be heading out to Millard West for the Relay for Life. He started summer school today to work on getting him caught up in reading and he loves that - lots of his friends in there and a great teacher too. I will post results from his scans on here Thursday afternoon as soon as we get them.

We had a great weekend. We went to Children's on Sat night for the Children's Miracle Network Telethon. We were interviewed and Jake was so funny on there - making faces to himself on the monitor. We stayed there until 11, hanging out with other cancer families. Then Sunday we went to Cancer Survivors Day Festivities at Cancer Suvivors Park for a picnic. The boys played baseball and had their faces painted - it was a fun day.

We have been busy getting ready for the Fundraiser for In the Arms of Friends that is July 29th at our church - St. Andrew's Methodist on 150th and Maple. Carrabas restaurant is providing the food and we have a great raffle planned. You can buy tickets from us - it's $10 for adults and $6 for children. Hopefully a lot of you can come and take advantage of the good food and friends for a good cause! Just contact us if you would like tickets.

Brandon, Steve and I are doing well too. Steve and I are anxious about Thursday, but overall feel like everything will turn out fine. Jake is scheduled to have his port out on June 29th if all is well. Oh, he went to the Red Cross yesterday and took some pics dressed up like a rock and roll dude for a campaign the Red Cross is having this month or next. Look for him decked out in a leather jacket on the posters! They are starting to run on the low side again for blood, so please, please go give blood! The summer is a hard time for them - many people need it, but not many are giving! Plus being a pint lighter will make you all that much cooler in this humid weather we have been having! It's True!

Thanks for checking in on us! Make it a great week and love up your kiddos!

Love, Kellie, Steve, Jake, Brandon and Ben :~)

Wednesday, May 26, 2004 11:49 AM CDT

Hey, Everyone! Sorry for the big delay in posting. Everything is going well here. Ben is doing great and just had his two week check today. He is up to 8 lbs. 2 oz (his birth weight was 7-11)and checks out just fine. He is sleeping at 3-4 hour stretches at night and is just such a joy to have. Steve said the other night that it just feels so complete having three boys and that's just what it feels like - complete. It's like he has always been here. I thought a baby in the house would really shake things up as it has been so long, but it hasn't. All has gone relatively easily and I think a lot of that is just because last year was so unbelievably hard physically, emotionally - you name it - that even having a newborn and the work it brings pales in comparison. I feel great and have recovered quickly - mainly because I have three of the best boys ever taking care of me. Steve, Jake and Brandon have been so wonderful - the boys just dote over Ben and have been such a huge help with him and with keeping the house in order too.

Jake and Brandon had a great Saturday hanging out with old Husker Football players! Grant Wistrom who played for the Huskers and now plays for Seattle puts on a golf tournament to raise money for Camp CoHoLo here in Nebraska and it was this past Saturday. They rode around with Grant and on his cue screamed when the football players were trying to swing. Jake helped out with doing a TV interview and holding up the prizes for the program afterward. They came home with footballs signed by all the players and even Coach Tom Osborne. They have been talking all week about what a great time they had. Thanks to Anisa for watching them and making it such a magical day for them!

This is Jake's last week of school and Brandon had his last day on Monday. Tonight Brandon has preschool graduation which is one of my favorite nights. Last night Jake had his first t-ball practice. He was a little nervous how this new set of kids would take him and his hair and the fact that he has to wear a helmet the whole time. Soon into it, though, he was yaking it up with his new teamates and cheering them on when they were hitting. They were letting the kids run the bases after they hit and when Jake ran around those bases with his heavy little feet working so hard, I just couldn't help but start crying. I looked over at Steve and he was crying too. He has come so far to run those bases - it's such a joy to see him do something like that.

So what's next for us? Jake and the family will appear on the Children's Miracle Network Telethon on June 5th at 8 p.m. if you want to check that out. He has his 6 month scans on June 10th and if all those are clear, he will have surgery on June 18th to have his port removed. Please include Jake in your prayers for clear scans. Please also keep special friends of ours - the Jones in your prayers as they just had their son Benjamin's regular scans and they found that his medduloblastoma (brain tumor) has returned with two tumors in his brain and others all up and down his spine. They put him under Hospice care and have given him 2-4 months to live. He had no symptoms before his scans, so his parents were floored by the news. His mom was such a huge help to me when Jake started radiation and Bejamin is the same age as Jake. Benjamin's site

Oh, wanted to let you know too that Carraba's Restaurant and our church, St. Andrew's Methodist Church, is having a fundraiser for In the Arms of Friends on Thursday, July 29th. It is at the church and you can get a great Carraba's meal for only $10 for adults and $6 for children! All the proceeds go to our foundation! Thanks to Carraba's Restaurant and St. Andrew's Church for this great fundraiser! Mark it on your calendars and I will let you know when tickets can be purchased. It should be a fun night and appreciate everyone's support as always!

Thanks for checking on us! Have a great weekend, love up those kiddos and go give blood!!!

Love, Kellie, Steve, Jake, Brandon and Benjamin :~)

Monday, May 17, 2004 11:28 AM CDT

Hi! Just wanted to post some new pics of Benjamin. He is doing well - eating good and just so sweet. We got home from the hospital on Friday. Brandon and Jake have both been great helpers and love him dearly. What a wonderful blessing it is having a new baby in the house again. Thanks to everyone for the great notes in our guestbook! Thanks too for the gifts, flowers, meals, visits and phone calls! We are just delighted to have Ben here and a part of our family!

Will update more later! Enjoy the new pictures on the photo page. Love, Kellie :~)

Thursday, May 13, 2004 6:10 AM CDT

Hey Everyone!! Just wanted to let you know that Kellie had the baby last night at 8:28pm. It was 7lbs 11oz and 20 inches long. Everyone is doing just great!! We got there about 5:30pm and she had it about three hours later. So it went pretty fast. Check out the pictures of the new one.

Thanks again for checking in on us!!!

Love,
The Beresh 5

Oh, I almost forgot, it is a BOY!

Benjamin Townley Beresh

Just wanted to keep you waiting a little longer!

Saturday, May 8, 2004 7:49 AM CDT

Update - Monday 10:30 - Although just yesterday I posted good news about a lot of our friends, tonight I have some special kiddos and their families that desperately need your prayers: Jacob from Omaha who is in Houston getting a bone marrow transplant and is having major complications Jacob's Site
Benjamin who has just relapsed after 2 years post diagnosis with Medulloblastoma (brain tumor) and whose mom was so helpful to me when Jake first started radiation Benjamin's Site
And finally Maddie who at 14 passed away from a Diffuse Pontine Glioma (brain tumor) this past week Maddie's Site. Please stop by their sites and sign their guestbook - just knowing there are people out there praying helps so much!

SAT - Goodmorning! It has been a great week! Jake is feeling better about school and wow! what a huge burst of energy he had this week. He just seems to get better and better week after week even after 5 months. We went for his monthly check-up on Thursday and it went well. His counts were good and the doc thought he looked great. We got his 6 month scans set up for June 10th and if all of those look good, we will have surgery to take out his port on June 18th! You can start the prayers now as our anxiety which is ever-present starts heating up about now too.

At least between now and Jake's scans, we will have the "little" distraction of a new baby in the house. Nothing is happening yet as the doc said on Friday, but hopefully soon. We are as ready as we will ever be for the big shake up in the Beresh house this new little one will bring. We are just so excited to meet him or her. The boys love to hang out in Baby's room. They love to rock in the glider and be read to in there.

Brandon has been tearing up the soccer field and I can't believe he only has a couple more games left! He went to Kindergarten Round-Up yesterday and loved that. He is more than ready to go next year - he is thrilled with the prospect of him and Jake being in the same building at the same time!

More good news came this week with Josh Larson being discharged from the hospital! We are so happy for the Larsons! Josh is doing better and better everyday and will hopefully be eating on his own soon. Thank you so much to our friends out there that sent them stuff while they were in the hospital and follow their story and sign their guestbook. Your support meant so much to them and us. Cameron finished up his radiation and is feeling great! Tanner is all done with her treatment and her scans are clear! Billy is home and continues to do well! I love writing all that good news about our friends - such awesome victories!

In the Arms of Friends is going strong. We were able to deliver new games up to the Oncology Clinic this week and we are working hard to get the survival kits together for newly diagnosed families. We got a generous offer from our church (St. Andrews Methodist) and Carraba's restaurant to have a fundraiser for us at the end of July - thank you! Also, I wanted to thank the family of Ellee Betz who for her second birthday brought donations for our foundation instead of gifts! Thanks so much to the Betz Family for your generosity! We are planning on doing another garage sale this fall to benenfit our foundation and also the National Childhood Cancer Foundation that supports childhood cancer research that is terribly underfunded by the government. Hold onto your items as you clean out your closets this spring and summer, because we would love to have them!

Will be a great Mother's Day tomorrow - last year I remember being so sad and uncertain about the future. Now I've got two healthy and happy little boys this year to love up without as much worry and one other little one on the way to brighten our lives. I couldn't begin to want one thing more for Mother's Day!

I do want to wish a special Happy Mother's Day to all of my girlfriends that were such great mothers to our family this past year. There is so much truth to that e-mail out there about what every woman needs is girlfriends to get through life. So many of you mothered Brandon when I had to be away from him so much, and so many of you mothered Jake when I was too tired or sad to. So many of you mothered Steve and I in so many ways - giving us strength and surrounding us with hope and love. Whether you came in the form of an old friend, a new friend, friends from the boys'schools, nurses, child-life gals, friends from church or Premier, other cancer moms, followers of Jake's site that I will never know - you all mothered us and got us through. Happy Mother's Day to you all of you - you are the best a girl could ask for!

Give blood! Make it a good one and love up those kiddos!

Love, Kellie, Steve, Jake, Brandon and Baby Beresh :~)

Sunday, May 2, 2004 10:47 PM CDT

Hey, Everyone! Hope it was a good weekend for all of you. We had a good one. The boys are doing great! Jake was outside a lot with Dad this weekend practicing fielding grounders and cathing in preparation for baseball. He is so excited to play! Brandon had a soccer game Saturday morning and was outside despite the chilly temps as much as possible this weekend. We got the crib up! The boys made artwork for baby's room and I framed them - Jake's is a baseball picture (imagine that - is this kid focused or what?) and Brandon drew a family with a helicopter, volcano, tornado and airplane all in the picture!

I had an OB apt. on Friday and nothing has changed - still just 1 cm and baby is floating up high. No complaints out of me - I'm huge, have heartburn and my feet are swollen, but it all seems to pale in comparison to the stuff Jake went through last year. Plus we are so darn busy with getting things ready for Baby and Foundation stuff, and then I had a Premier Designs Jewelry Round-Up all day on Saturday which was a lot of fun. I got to meet Brant's Grandma (see his link above) - she was in for the meeting from out of town.

Jake is having some trouble in school with reading and writing. There are holes showing up in his skills in those areas. His Math skills are still tops and he does well with everything else, but just showing some signs of struggle in reading and writing. The school has him working in a first grade reading program and he will work in it this summer, so hopefully they can fill in some of those gaps and get him caught up. We are not totally sure if it's just because of all the school he missed or if we are seeing some side effects of the radiation. They think they only radiated about 7-10% of his brain, but whose to say for sure and who knows what effect that percentage could have on him. We will just keep pluggin' away at it. For as much brain damage as he could have sustained in this whole thing, I will take a minor reading problem! Hell, I would take a major reading problem!

Other than that, all else is great! I talked to Liz today and Josh is doing so well! He was actually laughing in the background. His counts are really coming around and hopefully he will be eating soon. A huge thanks to all of you that are ordering our childhood cancer awareness bracelets! Sales have been great - thank you! Another big thank you to Stephanie's family that have her memorials coming to our In the Arms of Friends Foundation! It is such an honor for us to accept donations in Stephanie's memory - she was a beautiful girl inside and out.

Jake has his monthly apt. for counts and to see his oncologist this week on Thursday. His walking is getting stronger, but he does fatigue and when he does those little feet just point out and you can tell it is taking every muscle in his thighs to get them off the ground. It is so great to see that improve, though, with time. He is also getting a new little patch of hair on his radiated side we noticed this weekend.

Here's a funny to start off your week....Overheard by Dad while Jake was in the bathroom, "Oh, that feels so good to get that out of my system!" Thanks for checking on us and for those of you that bought cheese pizzas for Make A Wish on Friday! We will let you know how things go at Jake's apt. and mine! Have a great day - go give blood this week - lots of little kiddos out there in need everyday!

Love, Kellie, Steve, Jake, Brandon and Baby Beresh :~)

Monday, April 26, 2004 1:26 PM CDT

Update April 29th - Thursday
Josh Larson has some white blood cells showing up!!!!!! A big whooohooo for that one! Stop by their site to wish them congrats! This is a huge milestone for them as it shows signs his stem cells are engrafting! What a relief. He had a rough night on some new antifungal medicine that has horrible side effects that they are giving just as a precaution as he is still running a fever, but with a sign of white blood cells this morning, things are looking up. You can hear it in Liz and Jay's voices this morning that it is a whole new day with hope that Josh will be feeling much better very soon. Please continue your prayers for them as this is still such a dangerous time, but things are headed in the right direction. Thanks for looking in on Josh and signing his guestbook - those messages mean so much even if they don't know you!

Hey, Everyone! Thanks for checking in on us again and again - you guys are great!

Wanted to let everyone know that there is a fundraiser for Make A Wish of Nebraska this Friday, April 30th that is a good deal for you that participate. If you order a large cheese pizza from Valentinos, Pizza Hut, Lanskys, Sam and Louies, Zio's, Old Chicagod or Papa Murphy's on Friday, it will only cost you $10 and ALL that $10 goes to Make A Wish of Nebraska!!!!! Please, please participate and support this great organization that helps kids like Jake realize a dream they have always had! Please go to their website by clicking here Make A Wish of Nebraska to get full details of this fundraiser and other events that you can get involved in to help!

Also, don't forget that we are continuing our change drive to Camp CoHoLo and you can contact me to donate! Thanks to Skutt High School here in Omaha for having a dress down day in May with all the proceeds going to Camp CoHoLo with the help of In the Arms of Friends. Thanks so much to all of you that have donated so far! Thanks to those too who have donated their time and money to In the Arms of Friends and those who have bought our childhood cancer awareness bracelets - it means so much to have your support and will make a big difference in the lives of families fighting childhood cancer!!!

All is good with the Beresh Family! Baby room is almost done, Jake is doing great and feeling good, Brandon gets his ears checked today as a follow up from getting his tubes in and Mom and Dad are just happy to be working in the yard and around the house this spring instead of being sad and still trying to adjust to Jake's diagnosis and always being at Children's like we were last year! Wow - so thankful for weeds in the yard and dust collecting on the furniture and having the time to think, "We really should be doing something about that," but then cooking out with friends or playing with the boys instead!

Please continue your prayers for Stephanie's family who lost their precious daughter to cancer as they say goodbye to her this week. Also prayers for Josh Larson as he continues to struggle with his stem cell transplant side effects. Hopefully soon we will see his stem cells growing and a much happier boy as a result! Please have Cameron and Tanner in your prayers also as he finishes his radiation this week and Tanner prepares for her end-of-treatment scans.

Have a great day - go give some blood!

Love, Kellie, Steve, Jake, Brandon and Baby Beresh :~)

Thursday, April 22, 2004 9:40 AM CDT

Friday, 3pm. Update:
All went well at my doctor's today. I am 1 cm dialated and my cervix is soft, so a little something going on. The heartbeat was a quick one at 152 today. We are all doing good. Please have prayers for Josh Larson as he is starting to feel really bad and has a rough week ahead of him. This is the most dangerous time of his transplant -his Whites are at 0. Hopefully in a week or so his new stem cells will grow and he will be getting ready to go home! Hang in there, Josh! Prayers too for the family of Stephanie - they lost their precious, sweet daughter at 18 years old today to cancer - Steph was one of the nicest kids I have ever met and one of our special friends from the clinic. It doesn't begin to make sense why someone as great as her and her family have to suffer so. Heavy hearts over here tonight.

Hello! Well that might be a record for me and not updating - over a week! I guess that's just an indication of how normal and good things are here at the Beresh house. Jake is feeling great - no complaints to worry us this week and seems stronger than ever. His swim lessons are going well and he is anxious to start baseball soon. He keeps asking me what his team name is and when will the coach call. I hope he can make it another month of waiting! Brandon is doing great and the tubes have gotten rid of the drainage that made him cough at night - no more snoring either. He is doing swim lessons as well as playing soccer right now. He loves just wearing the uniform and being a part of a team, but he told me the other day, "It's really not about just having fun, Mom, I like winning!" Competitive Little Fart!

We lost our first pet - the Betta Fish Bluey. We had him for a month and a half, which I was extrememly proud of. I cleaned his tank out on Sunday night and something must not have agreed with him after that as he started side swimming on Monday. I think Steve and I were the most attached to him, although Jake did have some big ole' tears for Bluey on Tuesday night. "I just have to be alone for a while, Mom." After a half hour or so he was done with the tears and has not said another word about it. I don't think anyone has a real need to fill up the little tank again with another fish.

I have been feeling good the last couple of days. We all battled a cold last week and it really got me down this weekend. I go to the doctor tomorrow and we do the official check to see if there is any dilation happening. All my pregnancies are so different. By this time with the boys, I was itching like crazy all over and having a hard time with carpel tunnel, but I never swelled a bit. This time, no itch (thank God) and no carpel tunnel pain, but my feet are puffy and there is no wearing my regular rings. Been taking the cord blood kit with me whenever I stray past home more than 20 miles - don't want to miss the opportunity to collect those stem cells. I'm sure they will forever stay frozen without us ever needing them, but I would hate to not have them at all. I will update with any news on tomorrow apt. when I get home.

We have been busy this week trying to figure out our car situation with baby #3 coming. The plan this weekend is to try and get the room together too - the painting is done, we just have to get old furniture out and baby stuff in. Nothing like waiting till the last minute huh? Not that we will need the crib immediately, but it would be nice to get some key supplies like diapers and wipes out of the pile that has accumulated in the closet! I'm pretty sure if my memory serves me correctly, you need diapers right away! We put the stroller and car seat together and the boys have diligently been praciticing their stroller driving. Jake as serious as can be keeps saying as he pushes the stroller around the house, "This is such good practice for me, Mom." Too cute!

My friend that is making our Childhood Cancer Bracelets has them up on her site now. You can go to Memory Market to view the bracelet styles and get the price and info on them. You can contact Amy directly to order or you can let me know too. The bracelets are beautiful and everytime I wear mine, I get a compliment and an opportunity to talk about my boy and his brave fight. All the proceeds from the bracelet sales goes to our foundation, so please check them out! What a great Mother's Day present these would make!

Remember our change drive for Camp CoHoLo is going till the end of this month. You can drop off your donations to me anytime! Please e-mail me (see bottom of this page) if you have a donation for the kids for camp this summer.

Please don't forget all the other kids out there that are fighting so hard. Josh Larson had his stem cell transplant yesterday and is coming up on some rough days, so please visit them and write them a note in their guestbook. Feel free to send them cards, pics or little presents too as getting goodies in the mail can really brighten anyone's day! Their address is on their webpage. Cameron only has two more days of radiation and then will be back home! He is doing well so far. Billy is home!!! What a miracle story that boy is - what a stong, strong kid. He is doing well - counts are stable and the graft vs. host disease that set him back some seems in check. Please pray for all these kiddos as well as for Jake and his continued remission! Thanks so much for checking on us and for the guestbook messages! There is nothing like the people in our lives that make up the net that pulls us through the tough times and wraps us with fun and smiles during the good times. Truely everyone's greatest gift is those people. Don't forget to remember your net and make sure you are doing your part to be a good net for other people too. Hey, if I haven't mentioned it before, you should GO GIVE BLOOD! Hope you all have a great weekend!

Love, Kellie, Steve, Jake, Brandon and Baby Beresh :~)

Wednesday, April 14, 2004 5:07 PM CDT

I'm back again already! Brandon is doing great after getting his tubes put in for a third time today! The little nagging cough he has had since the one tube fell out is gone today! Amazing what a difference those things make! He took a nap this morning and has been feeling good all day. We are all recovered from the fundraiser this weekend after resting for the past couple of days - my feet are back to normal size and I have some energy back. I am at 35 weeks this week, so things are getting close! We have the room almost painted and hope to start moving things in there this weekend.

The change drive for Camp CoHoLo that our In The Arms of Friends Foundation is having through the month of April is ongoing. So far with the generosity of people donating their change jugs, we have raised $650! I want to say a special "thank you" to my friend Amy Lueders and her partner in English Teacher crime, Daryle LaFleur, that are having their students collect change for our drive. They teach at Blair High School and it is so awesome how they get their students involved in giving a little happiness to cancer kids that otherwise would never know what summer camp is. Thank you guys so much for getting involved! You can still get involved too by donating your change - start a collection at your office, school or with friends and family. Then you can drop off your donations to me. A good way to get rid of that change you have just lying around! Camp CoHoLo will put it to good use - they run the camp every summer for around 150 kids that receive treatment at Children's Hospital and The Univ of Ne Med Center. The camp is run by private donations only, so they need all the help they can get! Thanks a ton to those that have donated already!!!

Thanks for checking in on us! Jake has not complained of anymore headaches. Last night it was a leg that was hurting - drives us crazy with every complaint, but we just have to keep the faith and not worry until there is really something to worry about. Ha! Easier said than done!

Josh Larson is on day two of his stem cell transplant - check out his site. Their address at the hospital is on there and I know they would love to get some mail. Jake said today when I told him Josh would be in for a month, "A month? That must feel like forever for him!" Prayers for Cameron Miller as he has to start radiation on his lungs next week as per recommendations from Mayo's. You can go to his site to see details of everything they found out up there. And don't forget Billy as he is going to try going home again and hopefully this time it will be longer than just for a couple of hours.

Love, Kellie, Steve, Jake, Brandon and Baby Beresh :~)

Monday, April 12, 2004 1:10 PM CDT

Hello! Thanks for checking in on us! What a great day Saturday was! The weather turned out pretty well and the sale was a success! We raised around $8000 for our In the Arms of Friends Foundation and over $500 for Camp CoHoLo! It was amazing, and that money will help us kick off our survival kits for newly diagnosed families with a bang! Thanks so much to everyone who helped with their time, item donations, organizational skills, money donations, helping us spread the word about our sale and to all the shoppers! Thanks to those of you that just donated to our foundation or Camp CoHoLo outright. I can't begin to list names on here as there are far too many to make something like this happen, but know that we are eternally grateful to all of you that participated, donated and worked during the week and that day to help out. We are so excited to have some money in our account now to start work on our survival kits and to plan a fun summer outing for the kids and their families that are on treatment! Our survival kits include an organizer, gift cards for food and gas, gifts for the children and tips and instructions for famillies just starting their journey in the treatment of their child's cancer. We will be starting this program through Children's Hospital and plan to provide 45-60 survival kits a year. So please keep your support of our foundation coming! The Camp CoHoLo change drive will be going on through the month of April, so you still have time to collect change and drop it off to me. We take any amount of change, so if you have some just lying around, please, please donate to Camp CoHoLo. They are funded only through private donations and need around $70,000 a year to run the camp, so every little bit helps!

Thanks to the Hoie kids, Jake and Brandon had a great time while mom and dad were busy with the sale on Saturday. We have been consumed with the fundraiser all week and it has taxed out this 8 month pregnant mama, so Sunday we had nothing planned. The boys had a visit from the Easter Bunny on Sunday and then we rested a majority of the day. We did go to a movie last night - Home on the Range. The boys said it was good and Steve and I will have to take their word for it, because I think he and I slept through a good part of it.

Jake's school just called and said he is complaining of a headache, so I am headed up to check him out. I will finish the update later! Ok, I am back and Jake seems fine. I gave him some Tylenol and had him go back to class. Hopefully he was just needing break from class. Headaches were his main complaint with the tumor initially, so it's never something now we like to hear him say. He seemed fine when I was up there, so we'll just try not to worry unless there is something to worry about. Never a dull moment!

Brandon goes in for his Kindergarten check-up and shots tomorrow. Then Wednesday he will be in Children's for his tube surgery. Third time on the tubes will hopefully be the charm. His hearing screening for Kindergarten at school last week was in the dumper in that ear without the tube, so there is no doubt he needs it.

Prayers to the Larson's this week as Josh is admitted today for his stem cell transplant. He will have chemo for the next 6 days starting tomorrow, a couple days of rest and then get his stem cells on the 21st. Please pray for no complications and Josh's side effects from the heavy chemo to be managable. Prayers for Cameron too as his family is at Mayo's the next couple of days getting a second opinion on surgery and radiation. And don't forget Billy as he is fighting Graft Versus Host Disease right now. He was home for a couple of hours and then started running a fever. He will be in at least a couple more weeks if all goes well and the GVHD does not progress.

Thanks for checking in on us and for all those that helped make our fundraiser such a success!!! We are truely blessed with some of the greatest friends and family ever!

Love, Kellie, Steve, Jake, Brandon and Baby Beresh :~)

Monday, April 5, 2004 7:24 PM CDT

Hey, Everyone! Just wanted to let you know we have new pics on the photo page today from Brandon's soccer game this past Saturday. He loved every minute of it and the rest of us did too!

Some of my great friends that have been so awesome to us this past year threw me a baby shower on Sunday and it was great! Now we actually have some stuff for this baby! Thanks to all my friends and family that came and for all the wonderful gifts! There is just nothing like awesome girlfriends and I think I have some of the best in the world! Thank you, Penny Wilcoxson and Jennifer Novacek, for such a beautiful shower - your friendship is so dear to me!

The big news this week - OUR HUGE GARAGE SALE!!!! - It's this Saturday, April 10th at our house - 17264 Washington Street in Mission Park off of 168th and Q. I cannot believe the unbelievable donations we have and are getting! So much furniture! Tons of baby and kids stuff and clothes. Such great household goods and awesome designer clothes, shoes, jewelry and accessories. We have 3 bikes and a lawn mower, snow blower, microwave. The amount of stuff is almost overwhelming! We will be open from 9-3 and we will have enough to last all day! We will also be selling these beautiful childhood cancer rememberence bracelets from Amy Yarnell. I have mine on right now and the gals at the shower thought they were incredible! They will soon be available on our website also! Please spread the word about our sale and come and shop! You can go to our website - www.inthearmsoffriends.org - to see some of the items and print off a flyer that you can take to work or to school and share with friends. Plus we will be kicking off our change drive for Camp CoHoLo, so if you have loose change hanging around in a jar somewhere, bring it over and plant some happiness this summmer for the kids at camp! The change drive goes on through the month of May, so keep collecting and spreading the word about it too! Thanks so much to all the people who have donated and are helping with the sale! See you all on Saturday - hopefully the weather will cooperate!!!

Jake is doing great - he has a little cold, but is doing well. He goes into the clinic on Thursday just to have his port hepranized. We are not due for a check-up with the doc for another month.

Please keep up your prayers for all of our friends. Josh Larson goes in for his stem cell transplant next week on the 12th. His family could use your prayers for strength and faith in a great outcome, which we all know Josh will have! Billy is doing great! By pure miracle he has come through his bone marrow transplant with little complications and will be going home on Wednesday - what an incredible joy that will be for he and his family!!! Plese continue your prayers for the rest of our friends and for Jake's remission!

Love up your kiddos, go give blood and hope to see you all on Saturday at the sale!

Loe, Kellie, Steve, Jake, Brandon and Baby Beresh :~)

Wednesday, March 31, 2004 10:45 AM CST

Hey, Everyone, I can't believe it is Wednesday already!!! It has been a busy week. We had a great time in Cedar Rapids seeing our friends Shawn, Missy and Cole Gilbert - the boys played like crazy and loved having a little roadtrip. I had a sinus infection and then had a tooth absess towards the end of the week last week. I went to the dentist on Tuesday and we did an x-ray and he said I was in major need of a root canal, so we did a quick root canal yesterday morning. I had Brandon with me and he was such a good boy, waiting for mom by reading books and talking to the staff. All is much better now and I guess there is more to do on my tooth, but the dentist said we will finish all that up after I have the baby. Enough x-rays for one pregnant lady I guess. Brandon had an ENT apt. on Monday and he has to get his third set of tubes put in. Persistent fluid in that ear that the tube has fallen out of and his hearing is down, so we will put them back in on April 14th. So an eventful couple of days and Jake actually wasn't the focus of any of it which is great! He is feeling so, so good!

We had neuro-oncology clinic on Friday morning and we discussed some possible things that they will do with Jake's skull in the future to give him more brain protection. Nothing will be done for a year or two, but it was nice hearing what could be done and that all looked great right now. We left for Cedar Rapids right after that and got home Sunday evening.

We are just getting all ready for our big garage sale fundraiser on April 10th. It will be from 9-3 and we have tons of stuff! You can go to our website now at
www.inthearmsoffriends.org. We have some pictures of stuff that will be at our sale, but we have so much more not even pictured or listed there! We will have baby items, clothes (kids, mens, womens maternity, baby), lawn mower, snow blower, tons of furniture, craft supplies, stamping supplies, household good, sets of dishes, toys, linens, cabinets, you name it - we will have it!!! We will have handmade bracelets honoring childhood cancer fighters and blankets made by our special cancer friend Stephanie(18)that is fighting so hard for her life right now that she has so generously donated. Please come and support our foundation and tell all your friends. Bring your extra change too for our change drive for Camp CoHoLo that we are having through April and May!!! We have so much great stuff and would appreciate everyone's support!!! So it's Saturday, April 10th from 9-3 at our house in the Mission Park Neighborhood - 17264 Washington Street.

Anyway, Josh Larson's scans have been clear so far and Cameron Miller's were all stable!!! Please keep both of them in your prayers as Josh has his stem cell transplant coming up April 12th, and Cameron has plans to go to Mayo's for a second opinion on surgery. Billy (see link below) is doing well with his bone marrow transplant, but still needs your prayers. Thanks for checking on other kids and please sign their guestbooks. It nice that you pray for them, but let them know you are out there doing it - it so cool to get people to sign the guestbook from other sites - the kids love it!

Thanks for checking in on us and for your prayers for continued remission for Jake! Thanks too for all the support for our In the Arms of Friends Foundation! There is a link above to the website where you can see upcoming events, what the foundation is about, a little story on Josh and Jake and you can of course donate too! The outpouring of support has been amazing so far. I had a friend call me the other day saying for her 2 year old's birthday coming up in May, she wanted everyone to give money to our foundation instead of bringing a gift! What an awesome idea from such a giving heart! Thanks, Molly Betz, for offering your support in such a sweet way! We really hope we can make a difference for other families! Your time and money will help us do that! Oh and have you given blood lately? You should!!!! Have a great week!!!

Love, Kellie, Steve, Jake, Brandon and Baby :~)

Wednesday, March 24, 2004 11:42 AM CST

Hey Everyone! We have new pics up from Saturday's Arenacross we went to on the photo page!!!! We had a great time at the races with the Larson family! They got us the tickets and walk the track tickets where we got to go walk on the track before the races. Amazing really how they bring all that dirt in, pack it so hard and then clear it all out again. The boys loved arenacross. We stayed for the whole thing and didn't get home until 11:30! I have to admit, it really was cool watching those bikes fly up in the air. Thank, Larsons for asking us to go!

All else is well. Jake and Brandon are both feeling good and keeping busy. Swimming lessons are going well and Brandon started soccer this past week. Jake is going to play baseball this summer, so we have to get him signed up for that. I have an apt. tomorrow with my OB and Jake goes in on Friday for nuero-oncology clinic where we will see both the nuerosurgeon and his oncologist. When I spoke to his nuerosurgeon after his scans, he said he did not anticipate Jake needing any further surgery on his skull since he had so much bone grow back this past year, but that they would look at it in a year or so and see for sure. They want to give the bone time to continue it's growth and to make sure Jake doesn't relapse.

There is nothing sweeter or more emotional for me still than watching Jake walk into school. He is so sweet getting out of the car blowing Brandon and I kisses and waving. He likes to be dropped off at the back of the school now that he can walk better, which means he has to make his way up a long sidewalk to get to the school. As he makes his way in, he stops and turns to wave at Brandon and I - we wait there his whole way in waving back and with each time, Brandon says excitedly and to make sure I know, "He's waving, Mom! He's waving now!" Each day I see him walking or running a little better - that duck walk of his improving with each day that we get farther from chemo. I am so emotional and thankful to see him being able to walk into that school all on his own and so excited for the day. I love when he turns around and waves like crazy, caring less what the other kids think and almost like he's saying, "I'm ok now, Mom. I'm really going to be ok. You don't have to worry so much about me because I made it. The cancer is gone and I made it." Then right before he goes into the door he yells, "Bye, Mom!" and when the air and wind are just right I can hear it plain as day. It is the most victorious walk of a boy who spent a year fighting for his life and now just loves every part of being normal again and not having to fight so hard. It's just Jake loving the journey whether it be through cancer treatment or just walking into school - loving it and reassuring me all the way that everything really will be all right.

We have fun plans for the weekend to go visit Shawn and Missy Gilbert and their son Cole in Cedar Rapids, Iowa. We have been freinds with Shawn and Missy since college. The boys are so excited to go and just get out of town!!! The weather is incredibly beautiful here - in the 70's and sunny, so a road trip to see friends just sounds so good!

Keep praying for all the kiddos out there fighting cancer. Special prayers for Josh Larson as he has all his scans next week in preparation for his stem cell tranplant in a couple of weeks. Continue your prayers for Billy too (link below)as he continues his recovery from his bone marrow transplant. Thank to all of you that have offered help and donations for our In the Arms of Friends Foundation's first funraiser - we are going to have a huge amount of stuff and it will definitely be worth you time to come shop! Remember to bring your change too as we are collecting that for Camp CoHoLo through April and May! It would be great to get a change collection started at your school or workplace or with your family! The sale is set for April 10th - pray for no rain that day! Have a great weekend and thanks so much for checking in on us!

Love, Kellie, Steve, Jake, Brandon and Baby :~)

Wednesday, March 17, 2004 2:28 PM CST

Hey, Everyone! We have new pics up here and on the photo page - you will have to check them out. Everything is good here. We had a great weekend and are feeling good since we got Jake's scan results back. It always takes a day or two for it to sink in. On Sunday, we let Jake pour out the rest of his Bactrim that he has taken over the past year every weekend as a preventative antibiodic against pnuemonia, and he finally wanted to squirt out his nuepogen shot that has been waiting in the fridge for him to discard. We have asked him for the past couple of months if he was ready to squirt it out and throw it away, and he would always say, "Not yet. Just not quite ready to do that yet." But he was ready on Sunday to get rid of it all! He poured and squirted the meds down the sink then he threw them in the trash and yelled at them. He loved it. He hated those shots and he hated taking that medicine too. I can't believe we have come this far and he is off all meds!!!! Man, this feels so good to get this far into remission.

Not much else for news thankfully. Jake lost another tooth on Saturday night and Brandon starts soccer this week. They both continue with swim lessons and we have been enjoying our spring break this week. All the very normal stuff that makes life so cool.

Our In the Arms of Friends Foundation has 501 (c)(3) status and is official!!! We are so excited. We are working on the logo and the website right now. We are planning on having our first fundraiser - a big ole' garage sale - on April 10th. We are also working on childhood cancer awareness bracelets and keychains to sell on our website that Amy Yarnell has so generously donated her time and talent towards. It's so exciting to get this going! Soon I will put a link on here for our website and you can all check it out, and if you feel so inclined, help us out by giving a donation. Liz Larson's husband, Jay, is doing the website and it looks great so far! Liz and I are so motivated to get this going and can't wait to get things really moving to help cancer kids and their families. There is so much need as these kids suffer so incredibly much through treatment. We have so many ideas for programs to help other people through it and give them a little fun, friendship and financial help as they battle the monster. We will keep you updated on how it's all going and how you can help if you are interested! I know Liz and I both feel that we need to give back as so many people give to us and what a wonderful way to honor the fight of our little boys!

Please continue to visit our friends - Cameron, whose parents have some tough decisions and a visit to Mayo ahead, Josh who is preparing for transplant and has scans coming the last week of March, Tanner as she struggles through her last chemo treatment on her Ewing's protocol and Billy as he is entering the roughtest week of his bone marrow transplant. Thanks to those of you that signed our guestbook in celebration of Jake's clear scans, those of you that continue to pray and root for his remission and those of you that visit our friends' sites and offer encouraging words. Again, it means so, so much! Have a great rest of the week!

Love, Steve, Kellie, Jake, Brandon and Baby Beresh :~)

Friday, March 12, 2004 3:47 PM CST

Hey, Everyone!!! We are so happy to report that all of Jake's scans are CLEAR!!! MRI, chest and skull x-ray are all clean. The clot in one of the sinuses of the brain is still stable and all else looks good! So very happy and relieved over here at our house. It's just so nice to have them done and out of the way for a couple of months. His port worked without a problem and all his blood counts were good too. Jake was in such a great mood today - he loves being up there in the oncology clinic. We go back to the hospital on the 26th for nuero-oncology clinic where we will see both Dr. Abromowitch (oncologist) and Dr. Hellbusch (neuro-surgeon). Since Jake is now 3 months without relapse, he can stop taking his weekly dose of Bactrim on the weekends and he is now totally off all medications! Seems like every one of these rounds of scans is such a milestone. Thank you all so much for your guestbook messages, e-mails and prayers of support. We really apprciate it so, so much! Thanks to Laura Ekborg for watching Brandon after preschool today!

This afternoon, I had my OB appointment and I took both boys with me. All is good, although I spilled A LOT of sugar in my urine this time. Maybe that screening was a little too early a couple of weeks ago. Dr. Ryder thought we would just wait and see what happens for the next appointment and decide what to do then if I had that much sugar in my urine again. I told him I would just follow the diabetic diet anyway - or at least try to - for the rest of the pregancy. All else was fine and the heartbeat was at 155 today.

No major plans for the weekend. The boys have spring break next weekend, so we will have to get outside in this great spring weather! I am so glad to have them home for the week. I just value having them close to me so much more after all that's happened this year. Sure they still can push my buttons and there are times they raise my blood pressure to life-threatening levels, but I really have a hard time having them away from me for too long now. It's security for both Steve and I to have them close to home as we are worried now so much more about them. Plus after a year of being split apart so much, it feels so good just to be at home and to be together. I don't know if we will ever be able to take a trip without them again - when I think of doing that, I really get a sick feeling in my stomach. Maybe that will change, but we don't really care if it does or not. We had too many close calls this past year of losing one of our children and the threat is still so real. I hope we never lose sight of the beauty of just having them as ours to love.

Hope you all have a great weekend! Thanks again for all of you worrying right along with us. Please visit our friends and offer your words of support in their guestbooks! Please, please let them all be in remission very soon!

Love, Kellie, Steve, Jake, Brandon and Baby :~)

Thursday, March 11, 2004 12:58 AM CST

Hi, Everyone! Tomorrow is Jake's scan day. I hate the week of scans - we just want to get it over with. We make plans for the weekend and then half joking but totally serious in our minds say, "We will do that as long as scans are ok on Friday." The balance beam we walk on just seems a whole lot thinner right before scan day. I will post results on here as soon as we know - hopefully tomorrow afternoon.

Jake is doing well. His fever ended Sunday and he has been in school all week. I was up at school today because he tripped and hit his chest right where his port is very hard on a chair. There is a cut on the port and it is red and swollen all around it, but it seems like it is still in place and Jake says it doesn't hurt. I did an activity with his class for 45 minutes after he did it and it wasn't bothering him, so I think it's ok. I guess we will see tomorrow if it's working when they go to access it. Hopefully the scrape will be better - it was still bleeding a little bit when I left. They are so great up at school at making sure he is ok when things go wrong and calling right away. He of course is scared that now it won't work and he will have to get an IV in his arm instead tomorrow, but I think it will be fine.

Jake and Brandon started swimming lessons this week. A whole group of new kids in close proximity and man you could feel ever pair of eyes on us when Jake walked in. I knew he could feel it too. He said the lesson was really hard and he couldn't get his feet to do what he wanted. I felt sorry for him because he has always been a great swimmer and I think he could really see how much physically he lost this year. His teacher said he did well, though, so I'm sure it was a combination of being in a group of kids were not used to his look along with struggling a bit with the physical part of being in the water again. He'll get used to it as always, though, and I think the swimming will really help strenghthen his feet. They really have gotten so much better in the past couple of months. Brandon reported that he loved his lesson, to which Jake replied, "What's not to like about level 1 - all you do is blow bubbles!"

Jake had his first haircut in over a year. He and Brandon went in on Tuesday and the barber said he thought he should just shave up Jake's head to get it to grow more even. It was in all different lenghts and goes from totally bald spots, to partially covered to full sections of hair. So he shaved it up and it looks cute. I think if we just keep the other side short to match the side that doesn't have any he will look ok. I know more and more it will become an issue for him and it will take so many years before he realizes his funky do is a small price to pay for his life. We will deal with it as it comes and anyway, I like the sound of "many years".

We are at the clinic first thing tomorrow morning and like I said, I will get results on here as soon as we can! Thanks for visiting and sign the guestbook to let us know you were here!
Love, Kellie, Steve, Jake and Brandon :~)

Sunday, March 7, 2004 4:46 PM CST

Hey, Everyone! I hope all of you here in Nebraska got to get out and enjoy all this great weather. To be honest, we have not. So much to do here inside and Jake's fever continues. Not all the time, just in the afternoon and then towards bedtime. Very strange. But he is feeling good otherwise, so that is good. Brandon is doing well. He got over his cold very quickly. That kid - when he is sick it lasts a day or two and then that's it.

I forgot to put on here that last Monday night we took Jake to the mall for the first time in over a year. It was just one of those places that we thought was just asking for trouble on the immunity front, so we just stayed away. He has wanted to go to Build a Bear since it opened and we promised him that when he was done with treatment he could go. Brandon having his birthday there reminded him of that promise, so off we went. When we got to the doors of the mall Jake stops a bit and says, "Wow! It feels so good to be back here. It seems like I haven't been here in a really long time!" I told him it had been over a year and that last time he was there he was 5. "Well this is a celebration, then, Mom, my first trip to the mall after a year!" When we got down to Build a Bear, the man asked us what was the special occasion we were there for, and Jake holding nothing back says, with arms waving of course, "I have had cancer for a year and have not been to the mall this whole time. So tonight we are celebrating my return to the mall!" He loved every minute of it. He made a brown bear with a Navy outfit and named it Russell after the ship we toured in Hawaii. He was so happy to be there - made us think how just being able to go places you want to is such a privledge and something we just take for granted all the time. It was probably the best night any of us had spent at the mall! Thank God for good health!

Please keep Josh Larson in your prayers as he goes in tomorrow to put a central line in his chest and then will be collecting stem cells this week for his transplant. Hopefully they will get what they need in a day or two and then have the rest of the week off. Also please continue to pray for Billy who has gotten his transplant and is doing as well as can be expected. His link is now at the bottom of the page under the links section. Please leave him a message of encouragement in his guestbook as he has hard days ahead and needs lots of prayers that this new marrow will engraft. Cameron Miller - our buddy from Remsen, Iowa is receiving his last chemo this week, so stop by and congratulate him - he was on the front page of the Midlands Section on Saturday in the World Herald - what a cutie!!! And lastly, please say prayers again for our friend Jake Novacek (2) who is in Children's again! He was fighting the Rotavirus 3 weeks ago and now has a staph infection! Poor kid can't catch a break lately. Also prayers for another friend of ours whose little boy Evan has a swollen lymph node that may require surgery this week. Boy is anyone tired of little kids being so sick? Spring, come quickly and clear some of this up!! Wish a little sunshine could take away all the cancer too!

Well thanks for checking in on us - we do apprecite seeing the ticker grow at the bottom of the page and getting the notes in our guestbook. We know that the beauty of friendship all around us is the best view we will every see. Hope everyone has a great week and please say prayers for our own Jake on Friday as he will be having his 3 month scans. We will not be doing a bone scan or a chest CT this time, so it will be a much shorter day for Jake. He will get a brain MRI, a skull x-ray and a chest x-ray. I will post results as soon as we know them.

Make it a great week and love up those kiddos. Don't count the days - make the days count and as always....
GO GIVE BLOOD!!!!

Love, Kellie, Steve, Jake, Brandon and Baby :~)

Thursday, March 4, 2004 10:25 PM CST

Friday update:

Ok, now here's a rundown of everyone's status:

Jake - better, but still running a
fever.
Steve and Kellie - out of their
neurotic phase and calm for
the time being.
Brandon - not so attention seeking
as he has his own attention
getter now - a cough.

Jake ran a consistent fever all night that shot up to 104 at one point. This morning he was about 101-102 with the Advil and Tylenol, so we went to the Oncology clinic for a throat culture, count check and run cultures from his port. Negative on the strep test and he has no other symptoms to speak of. His white count was high, so he's fighting something and we will see from the cultures in the next 24hours if it is bacterial. Dr. A thought it was probably just a wierd fever virus and to just keep the fever down and call if it gets worse. She didn't think it suggested any funny tumor activity. So Jake right now has only a fever of 100 and is doing well. Brandon is coughing, but no other complaints. Steve and I feel much better going into the weekend that the mystery fever is just a normal virus that will run it's course. So that is today's status - our cancer parent nuerotic panic is over for now and all is well. Oh something funny I have to share that Jake said this morning to me as he was checking out my maternity pants hanging to dry, "Those have to cost $100-$200 dollars don't they, Mom, with all the extra fabric in those huge things?!" Yeah, thanks, Jakie! :~) Ha! THERE ARE NEW PICS OF THE BOYS ON THE PHOTO PAGE - YOU WILL HAVE TO CHECK OUT JAKE'S NEW HAIR!!! Have a great weekend!
Love, The Beresh's :~)

Thursday -
Hey, Everyone! Thanks for checking in on us! Here is a rundown:

Jake - not feeling great
Steve and Kellie - neurotic
Brandon - tired of being the helper and now more into being dramatic for attention

Well, Steve and I aren't that bad now thanks to supportive words from our favorite nurse, Anisa! You see, Jake had to come home early from Spanish class on Tuesday because he had a little bout of nausea that had ended by the time I went up there and got him. I'm thinking as I'm going up to get him, "oh bummer, he has the stomach flu." Then I see him in the office, feeling fine and reporting that he felt like he was going to throw up, but then it just went away and then fear creeps up and slaps me hard in the gut as I think, "Oh my God, tumor!" Ok, talk to Steve, somehow us worried parents calm each other down and feel ok about the whole thing, but of course this is still stuck in the back of our heads.

Tuesday night we got to our bbsitter, Chelsea's, basketball game (championship game for the Millard North Middle School - they won, go Mustangs!) We have a great time and what a great kid that Chelsea is. Even in the midst of her celebrating with her team, she has time to hug up the boys and takes time to talk to them and include them too. Man, we are so blessed with the Hoie's in our life!

Anyway, Wednesday Jake is fine and has a good day. Then Wednesday night, he wakes up at 4:30 am and says he is cold - he has a little fever - 99. After a while he says his head hurts - instantly, I'm sick to my stomach. I give him some Tylenol, he goes back to sleep. Steve and I are up for a couple hours after that worrying (We are so, so good at this.) So today Jake wakes up, is getting ready for school and then just starts crying as we are about to head out the door. I take his temp. 99. Ok, so let's just stay home and then I can just spend the whole day taking his temp every 20 seconds and watch his every move. So today he has this fever with no other complaints. The fever climbs to 102 at times, responds to Tylenol and then comes back up after Tylenol wears off. He's achy and says his head hurts when his fever is going up, but other than that, no nausea, no sore throat. Steve is calling every 20 minutes to get the report - he's obsessing; I'm trying not to. Do you get the picture here how fun this is? We are just hoping that he throws up or gets a sore throat so it will seem like just a normal illness and not a bigger issue. So tonight we feel better because he still has the fever so it seems like a virus or something like that. Hopefully he will be better in a couple of days, next week's scans will be clear and we can have a normal thought process in this house for at least a month or so until we start thinking about the next set of scans coming in a couple of months.

I did have a good day with the boys even amongst all this - just loving them up on the couch most of the day, and the times Jake was feeling good we had major craft projects going on. I had a jewelry show tonight too with a good friend - Deb Fry - one of the many of a group of friends that I now refer to as my "survival group" as they are what got us through this past year. So things are calmer. Steve and I go to bed tonight with our neurotic tendencies almost neatly tucked back into the back of our brains. Thanks, Anisa, for your encouraging words tonight!

Continued prayers for our friends and for Jake's remission! Make it a good one!

Love, Kellie, Steve, Jake and Brandon :~)
(The neurotic parents trying so hard not to let fear take over and their awesome little boys!)

Monday, March 1, 2004 1:16 PM CST

Hey, Everyone! Can't believe it is March already! Wow! We are all great here. Jake and Brandon are both feeling good. Brandon had a great 5th birthday and got lots of nice presents. He got a Nebraska Husker Football Uniform from Mom and Dad and he has worn it all weekend. He even had to wear it to preschool today.

The Black Tie dinner honoring my Uncle Benny went great. Benny was so glad we came. Everytime I see him I see how much my Mom's family meant to him to have sponsored him to come to the United States after being freed from Austwitch Concentration Camp in Germany. GI after GI had told him, "We will send for you Benny," and month after month went by with no word from any of them. Then my Grandad and the Townley family sent word to him that they wanted him to come to the US and live with them in Nebraska. His story is amazing and so heartbreaking and touching as he told of how the most amazing site he has ever seen is the Statue of Liberty. So much of the freedom of this country we take for granted and you never can know how much it means until you hear someone like Benny speak. He told of how the people in New York and Chicago on the trains he met while traveling to Nebraska to meet my family would tell him, "Don't go to Nebraska!" But he came and when he got off the train, the Townley's were there waiting for him, including my mom who was 3 or 4 at the time. When he got off the train, she started crying, because she was so excited about getting a brother, but not one as grown up as Benny was being in his late teens! He loves to tell that story. If you ever hear of Benny Hochman speaking at your organization or local school or business function, go see him! He also has a book called, "From Hell to Here" that is very good and all the proceeds go to scholorships.

Sunday we went to our friend, Charlie Peters (5), "Done With Chemo" party. The Peters family is another amazing story. 5 years ago this April, their then 5 year old daughter, Morgan, was diagnosed with Rhabdomyosarcoma in her face and ear. She was given less than a 50 percent chance at survival, but she prevailed after the family fought a year long battle through chemo and radiation for her life. 4 years later, her 5 year old little brother, Charlie, was diagnosed with Burkitt's Lymphoma. I can't imagine two of my children having to battle this monster. I can't imagine having to go through another year of treatment and hospitalizations and seeing another one of your children suffer like cancer kids do. Charlie is done with his treatment and is doing very well. He is back in Kindergarten and feeling good. They came close to losing him more than once this year and spent two consecutive months in the hospital during Charlie's sickest times. They suffered like all of us cancer families do with the incredible disruption to life that treatment brings. They suffered throug the pain of watching your child nauseated, in pain and weak, not having any kind of schedule, not having any time to be all together with your family, being pulled away from the family, friends and lifestyle you are used to and thrust into a world of needles, pain, worry and anguish. And they did all this while trying to desperately love and provide for their 5 other children! Two of which were 2 yrs. and 6 months! Being in treatment for childhood cancer is hell, but I can only begin to imagine, and pray that is all I will ever do, the horror Matt and Jenny faced when their second child was diagnosed! They have been such incredible friends to us and their faith, acceptance, humor and guidance have been such a pillar to us. Their Christmas letter Jenny wrote is so inspiring that I keep it on my desk and when I have a down moment or I feel fear creeping it's way around me, I take out her letter and read it. Steve always says you never have to go far in a Children's Hospital to find stories worse than yours unfortunately, and in the oncology world, that is too many times true. So prayers of celebration and honor to the Peter's family as they have provided us with true examples as to how faith, fun, friendship, lots of laughter and acceptance can get you through anything. Please pray for Charlie and Morgan's continued remission in all their many years to come!

It's been a while since I've been sappy, so I thought we were all due! Please check on our friends and have prayers for all the thousands of kiddos out there suffering as no children should. Don't forget Billy who just started his chemo for his bone marrow transplant and is feeling pretty rotten Billy's Webpage. Also prayers for Joshua Larson as they start preparing for his stem cell transplant this week. And finally prayers too for Jake's continued remission. His next set of scans are this month on the 12th, so the nervousness is starting to set in. He looks good and feels great, so hopefully that means as much on the inside as it does the outside. Have a great week!

Love, Kellie, Steve, Jake and Brandon :~)

Friday, February 27, 2004 2:43 PM CST

Hi, Everyone! HAPPY BIRTHDAY TO MY SWEET LITTLE BRANDON!!!! He is 5 today! I took him to preschool and then picked up him and two of his friends and headed to the mall. We went to Build-A-Bear, and built bears! Steve met us up there and Brandon made a basketball bear and loved every minute of it. We then took the kids to the foodcourt for some Burger King lunch. Tonight we are celebrating Brandon's birthday with the family. It's a beautiful day here weather wise (50's and sunny), so a great day to celebrate Brandon!

I had my doctor's apt. today and I passed the diabetest screen! Now that I won't be going on that diet, I can't use the "I better eat this goodie or that goodie while I still have time" excuse! Heartbeat was at 154 today if I remember correctly. I go back in two weeks.

Jake is doing great and has made it all week in school! The helmet is working out and he seems to like wearing it for recess and gym. More and more the hair is growing in and he says the kids at school love rubbing his head.

Not much else to report thankfully. We have a black tie dinner we are going to Sat. night to honor my uncle Benny at the State Capitol. Benny was sponsored by my mom's family to come over here to the United States after WWII. He was a prisoner at Auswitch Prison Camp in Germany and met my Grandad Townley over there when my Grandad was in the service. His entire family was killed by the Nazi's, and he was 17 when my family sponsored him to come to the United States and become part of the Townley family. He has made it a lifetime committement to tell his story all around the country - he is an incredible speaker. He also has been a dedicated man to community service and his patriotism is unmatched. He is being honored by the govenor on Saturday night and we are so excited to attend. Steve had to rent a tux, and somehow I found a $20 dress to wear over this big tummy! This is where our name for this baby if it is a boy comes from - Benjamin Townley Beresh - an incredible namesake.

Please check on our friends that are fighting cancer and leave them a kind word in their guestbook. Prayers for our friend Billy who is starting his bone marrow transplant process Billy's Webpage. I checked his website today and I was so pleased to see people who linked to his site from Jake's that had signed his guest book. He is a great kid who has Ewing's and then developed a type of Luekemia from his chemo treatments. He now has to have a bone marrow transplant to save his life.

Please continue your prayers for Jake's continued remission. Thanks for checking on us and for your unending support! Make it a great weekend and love up those kiddos!

Love, Kellie, Steve, Jake and Brandon :~)

Monday, February 23, 2004 9:26 AM CST

THERE IS A BONE MARROW REGISTRY DRIVE THIS SATURDAY AT ST. ROBERTS CATHOLIC CHURCH ON 119TH AND PACIFIC FROM 8-12. IT IS IN HONOR OF OUR LITTLE FRIEND JACOB WHO IS 3 AND IS CURRENTLY BATTLING LUEKEMIA AND WAITING FOR A BONE MARROW TRANSPLANT. IT ONLY TAKES A VIAL OF BLOOD TO GET ON THE REGISTRY! PLEASE GO AND GET SINGED UP - SO MANY CHILDREN AND ADULTS ARE IN NEED!!!

Thank you, thank you to Craig Hamilton (Brant's Dad) for teaching me a thing or two about websiting (yes, my dear English teacher friend, that is a word!) and helped me get those links at the top of the page on here. I'm so excited to finally know how to do it! Please visit our friends (more listed on the bottom) and leave them a guestbook message. You can't imagine how near and dear to our hearts our guestbooks are and how much it means when someone leaves a note!

What a beautiful weekend weather wise - we have lots of snow melted and about 2-3 more inches to go. It's muddy to say the least, but the warm sun felt so good. We got to get out and play with the neighbor kids again, so that was nice.

Jake is doing great - no worse for the wear with the accident he had with his head on Thursday. He was back in school Friday and doing fine. Friday night we had Justin and Brianna Juma over for a sleepover which was so much fun! It was so cute listening to the kids visiting in their sleeping bags before drifting off to sleep. Saturday there was lots of work for Steve in the new laundry room. The word inside the house is ORGANIZATION. Mix a little spring cleaning in with that nesting instinct in a momma that hasn't had the time or the care to do any for a year and you have a woman on a mission! We are preparing for a big garage sale I want to have in the spring to raise money for our foundation, In the Arms of Friends. We are working hard on laying the groundwork for all of that. It's a lot of work, but I am so excited to get the foundation started. We want to do more to help other families that will follow in our footsteps as they battle cancer in their children. Of course you all will be hearing and seeing a lot more about it in the future - so be ready!!! :~)

Last night we went to a fundraiser for Camp CoHoLo that Jake and I spoke at. It was at the Temple Isreal and we had so much fun. Of course the boys got all caught up in the silent auction and surprised mom with foot massger they bid on for me! Jake was a natural talking in front of the crowd - he had his hands going and his little broadcaster voice as he told the group how much he loves going to Camp CoHoLo. Thanks,Temple Isreal, for having us share in your night and for raising money for the camp!!!

Tomorrow is the revised date for Josh Larson's last radiation treatment. They are laying the groundwork for his stem cell tranplant. Please stop by and congratulate him for being done with this phase of his cancer butt-kicking! Prayers for a fellow Ewing's kid, Billy (12), Billy's Webpage as he goes in for a very risky bone marrow transplant this week. He was on treatment for Ewing's and then the chemo caused him to get a serious form of luekemia towards the end of his Ewing's Protocol. Also, prayers for our friend, Jacob (2) for a quick recovery from the Rotovirus - we all know how fun that can be!!! He is in Children's right now dehydrated and feeling pretty rotten, but hopefully he will be home in a couple of days.

Brandon's birthday is this week - he will be 5 on Friday!!!
Here's a little funny that Jake told me yesterday. In talking about his friend Bailey that he has been making little cards and taking little gifts to school for he said, "You know, Mom, Bailey is just my top priority right now." I'm sure Bailey is eating up the attention - she has been such a good friend to him through all of this!

That's it for news. Only one doctor's appointment this week - mine. I go have my glucose test on Friday. I had gestational diabetes with Jake but not with Brandon, so we will see what happens this time. I have one squirmy baby in there this morning - I love that feeling. It's so amazing to think there is a little human in there just living and growing and soon it will be in our arms. We are all getting anxious for him or her to arrive!

Hope you all have a great week! Thanks for checking in on Jake and please have prayers for all the kiddos out there battling cancer - it's the second leading cause of death in children - only after accidents. So it's the leading disease killer in children and yet so little is spent in research for it. Plus the treatment can be as bad as the disease. I sometimes can hardly wrap my brain around the suffering in so many children. There is a never-ending array of websites with stories of the suffering. There are so many victories too and hopefully ours will stay on that path. Anyway, love up your kiddos and we will update soon!

Love, Kellie, Steve, Jake and Brandon :~)

Wednesday, February 18, 2004 4:32 PM CST

Hey, Everyone! Thanks for coming by and checking on Jake! He is doing great and feeling good I am very happy to report. We got a helmet for him to wear at school in gym for everyone's piece of mind and wouldn't you know it, he loves wearing it so much, that he wears it out at recess and in and out of school too! It is a skateboarding helmet with a big hawk on it for Tony Hawk, so Jake feels pretty cool wearing it. It's nice to know the part of his brain without skull protecting it is getting watched over now by a skateboarding legend!

We saw Dr. Raman today, Jake's radiation oncologist. He thought Jake looked great. He looked him over, did his little mental check by talking to Jake and said he thought Jake has no mental setbacks from the radiation. He was also happy to hear that his hearing was normal and said that usually if there was going to be a loss, it would have happened already. We will check on it again in May and of course keep up the cleaning of that nasty wax that builds up in there. He said Jake's hair may or may not come in and that someday we could consider a hair transplant for him on that side that was radiated. Otherwise he thought Jake was headed in the right direction and has a good chance. He said he got enough chemo to "kill a horse" and now we just hope that keeps it from ever coming back. Afterwards, he took both boys to the vending machines and bought them each a treat! He is such a nice guy! We will plan on seeing him in a year and otherwise he said, "Jake doesn't need me." We may not need him, but we do enjoy seeing Dr. Raman.

All else is well and we seem to be fitting in some routine to our lives again. January was so busy with Jake's parties and other family birthdays and getting ready for and going on our trip. Now it seems we are falling cautiously into our new "normal" with Jake in school everyday, me working with my business again and Steve actually being at work too. The boys are so excited for this baby - it is so much fun to watch. They have been practicing by one of them being the baby and the other being the big brother and then switching roles. It's pretty darn cute. We went and saw our friend's baby the other night and both boys were fascinated by her. Brandon held her at lenghth and the next day they were saying they wanted a baby sister instead of a brother. They also thought of some new names that no one else had. Brandon came up with "Lally" for a girl and Jake came up with a boy name of "Jermicrophone"! We all laughed and laughed on Tuesday morning laying in bed together before we started to get ready for the day when Jake thought of that one. Brandon has this hearty, old-man laugh that is the best, and it was in full force when Jake laid that one on us. I love the mornings with the boys. I look so forward to so many more of them in the future.

Hope you all have a great rest of the week and weekend! We are having the Juma kids over for a sleepover on Friday night, so that should be fun. Plus we will be putting up the trim work in the laundry room and maybe even cleaning out the baby's room a bit. We've had a couple days break from the bitter cold and it has been beautiful here (in the 40's)- spring is dipping it's foot in. It has a lot of work to do - there is so much snow left to melt - it may be June before it's all gone!
Love, Kellie, Steve, Jake, Brandon and Lally or Jermicrophone :~)

UPDATE, Thursday Feb 19th - Thank God for the helmet - Jake took a big shot out at recess this morning. He and his buddies were playing in the snow and one of them landed right on his head! He was really shook up and had a headache. He was really crying which isn't like him, so I just went up and got him and brought him home to keep an eye on him and watch for signs of head trauma. He seems fine now, but was really glad to see me and come home. I think he was more scared than anything else. He took some Tylenol and layed on the couch for a while. Now he and Brandon are in the basement making a creation, so he is fine. Man, he scared me, though, and I am so thankful for Tony Hawk and his cool helmet - I think Jake is more than motivated to wear it all the time now! Thanks to the folks at Jake's school (Wheeler) for taking such good care of him!

Friday, February 13, 2004 1:18 PM CST

Hey, Everyone! The link to our Hawaii pictures is still below, so if you had not a chance to view them yet, you still can. If you want a rundown of our trip you can look at the past journal entry dated February 8th.

Jake is doing great! We had our monthly clinic appointment yesterday and it was the first time in a year that he didn't scream when they poked his port. Probably now that he isn't being prodded and poked all the time, doing it just once a month doesn't seem so bad. We saw Dr. Abromowitch and she said he looked good. His counts were as follows: White blood cells=7.8 (normal 5.3-11.5), Hemaglobin=12 (normal 10.5-12.7) and platelets were around 350 (normal 204-405). We were pleased to see everything looking good with his counts, and it was the first time I did not ask them to make a copy of the count sheet for me. All I have to remember now is that they were normal. Even with a pregnant brain, I can do that! It was the fastest clinic appointment we had ever had and such a weird feeling. We left there feeling kind of like, "Are you sure that's it? Don't we have something else to do?" We have everything set up for the next scans on March 12th and if everything checks out then, Jake can stop taking his weekly dose of Bactrim and he will be off all medicines. We just hope and pray and hope and pray that we can continue appointments like this - fast and easy and everything ok. I don't know if we will ever get used to having this fear lurking beside us, but hopefully with time we won't give it as much of our time. It will never go away. We just have to learn to live with it. We are better than we were the first couple of months, but the slightest complaint of this hurting or that hurting and we are right back there - sick with worry and desperate for confirmation that it is indeed just an ache and not the cancer coming back.

Anyway, things are good. We got the floor done in the laundry room and will have cabinets and counter top installed tomorrow. We are so excited to have that room done and I am excited to have the washer and dryer back. We may have to go to the neighbors tonight to do some laundry. The next project must be the baby's room. We need to set up the service to collect this baby's cord blood and buy a rocker and move the furniture out of the room and move baby stuff in and paint and buy everything and etc, etc.... It will all get done eventually.

Brandon had an appointment with the ENT on Monday and one of his ear tubes fell out already. Less than a year and this was the kind that are supposed to stick in there better. So his ear drum in there is maxed out and we will just see how he does the rest of the winter to see if we have to put another one back in. Brandon turns 5 on February 27th, so he is pretty excited for that!

Please check on our friends that need your support. I wish I could put a whole bunch of links up here as there are so many kids we follow that need encouragement. Josh Larson (link at bottom) is doing well through radiation. He has completed 3 weeks and has 2 more to go. They are struggling with some decisions as far as his stem cell transplant goes, so please have them in their prayers that they will find the information they need. Our friend Cameron (www.thestatus.com last name:Miller, password:hawks1)in Iowa has two more chemos left and then he and his family will be trying to find a surgeon who can operate on Cameron's tumor. Some other Iowa friends of ours Brant(www.caringbridge.org/ia/brant-thomas) and Jace (www.caringbridge.org/ia/jacecarrico) are doing well in fighting their brain tumors. Brant is done with his treatment and is headed down to Florida for his Make A Wish trip. Jace has just started his journey and has a tough regimen of chemo and radiation that he is going through right now. Also, please visit our friend Tanner in California (link at bottom) that is on her 12 out of 14 chemo treatments for Ewing's. She is having a rough go and could use a note of encouragment. There is also Billy from Florida (www.wm-c-gowacki.com/BILLY). He is 12 and has Ewing's and was almost done with his treatment when they found out he developed luekemia from the chemotherapy. He is preparing for a bone marrow transplant right now and could use your prayers. He may also lose his leg in this process as he has had a horrible infection in his leg and they might have to remove the leg in order for him to continue into the bone marrow transplant if they can't get the infection under control! This kid has been through so much in the last couple months and his mom has MS too. You'd think it was enough that he got Ewing's - I don't begin to understand the fairness in it - there isn't any I guess. Lastly, there is Delaney (www.caringbridge.org/oh/teamdelaney) Delaney was the first Ewing's website we found and she is almost a year post treatment. She had a questionable CT that shows a mass in one of her sinuses in her head, and they are not sure what it is. She will have a risky surgery on Monday to try and biopsy and remove the mass. Please pray that it is a side effect from her radiation-damaged sinuses - just infected snot - and not a return of her cancer. This girl and her mom have been such an inspiration to us. With these kids, their stories of victory are such an inspiration to us and their struggles and relapses are so devastating. These people aren't just families we read about on a computer screen, they are our friends. Friends we have spent endless hours e-mailing, calling, rooting for and crying with. Please visit them and tell them you are a friend of Jake's and offer any word you can to help them as you have helped us so with your guestbook entries that mean so much to us.

We have no big plans for the weekend. Steve and I are not big Valentine's Day celebrators, but the boys and I are making Valentine brownies this afternoon. Maybe we will have movie night tomorrow night and camp out in the family room and play games or something. It just feels so good to be together the four of us everyday and night. We had a Candlelighters meeting last night(support group)at Children's and Steve commented how weird it was for all of us to be leaving Children's together at that time of night instead of just one of us with Brandon while the other stayed with Jake. It feels so, so good just to be home and off treament. Here's hoping it lasts forever!!!!

Have a great weekend! Go give some blood and love up your kiddos!!! Love, Kellie, Steve, Jake and Brandon

Sunday, February 8, 2004 12:19 AM CST

NEW LINK AT THE BOTTOM OF THE PAGE THAT YOU CAN SEE ALL OF OUR HAWAII PICTURES!!!! CLICK ON THE FIRST LINK THAT WILL TAKE YOU TO SHUTTERFLY AND THEN CLICK ON "VIEW PICTURES" - ENJOY!

Goodmorning! We have 20 some inches of snow on the ground here in Omaha and it is bitter cold - I LOVE IT! Ok, I guess I could stand it a little warmer, but I love all this snow! I know, I know my car is in the garage and I don't have to be at work at 6 am, but still, it's just so beautiful!

Well, this is going to be long, but I wanted to update all of you on how great our Make A Wish trip to Hawaii was! First I want to thank the Make A Wish Foundation for making the trip possible. Nebraska's chapter of Make A Wish is so strong - keep supporting it everyone - the promise of this trip all year has been such a lifeline for us through all the crap Jake has been through! Thanks to our Make A Wish Coordinators, Bertie and Pam, for working so hard to make our trip so spectacular!

As most of you know, Jake's wish was to go to Hawaii. He has been fascinated with Hawaii since his preschool had Hawaii day when he was three. We used to have some old couches in our basement that he and Brandon played on and that area was named, "Hawaii". Before he went into his big surgery, he asked if he could go to Hawaii when his surgery was over - of course we said "yes". The recovery nurses told us that that was the first thing out of his mouth - that his mom and dad were taking him to Hawaii. Thanks to Make A Wish, it all happened. Jake decided to get a little more specific with his wish. He wanted to go to Hawaii and wear a real army uniform. "Not one of those Halloween costumes you get at Nobbies, Mom, a real army uniform just my size." So in November, Bertie and Pam with the help of the army recruiters here in Omaha, got he and Brandon those uniforms - they are incredible. Then he said he wanted to get on a ship in Pearl Harbor (he is fascinated with history and wars and especially the story of Pearl Harbor), wearing his army outfit and meet the real soldiers.

After getting de-iced and making our way out of Omaha late on the 26th, we flew to Houston. We had missed our connecting flight, but they arranged for us to fly to LA and get on an American flight(we had been on Continental) to Honolulu. No one really said anything to Jake on the Continental flights about it being his Make A Wish trip, but when we got on that American flight, those flight attendants figured it out quickly and pulled out all the stops to make it a great flight for Jake. They had he and Brandon up in the cockpit with the hats on and manning the controls, they announced his name over the loudspeaker and then let him perform the duties of passing out the food and picking up the trash right along with them. Jake was in 7th heaven! By the time we got to Honolulu, most of the plane knew him and wished all of us a great trip. It was so much fun! It was late by the time we arrived in HI, so we got the car, drove to the hotel (the beautiful Waikiki Marriot, right on the beach) and went to bed. Of course the next day, the boys were up at 5 - hard to adjust those little body clocks!

The first day there was our tour of a ship and Pearl Harbor. All we knew was that we were to meet a navy representative and we would be getting our tour with another Make A Wish Family. We met that family whose son Billy had osteosarcoma in his leg and was about a year and a half from treament. He was 15 and we had a great time with his family. Brandon fell instantly in love with his 19 year old sister, Erika, and was by her side the whole day!

We found out that we would be touring not the USS Missouri which is docked in Pearl Harbor for tourists to tour, but an actual active ship! Jake didn't wear the army uniform - too hot! They had obtained military clearance for us earlier just in case this was possible. We were driven to where the USS Russell was docked, a guided missle destroyer. The ship was huge - 350 people live on this boat and they are preparing to head out to sea in the coming months. We met our guide for the tour, officer Carrie Chase who is in charge of communications on the ship. Our tour was fantastic - we went all over this ship - the boys got to sit in the captain's chair, visit the barracks and see the men and women of the ship at work. A highlight was visiting the "war room" where Lt. Wheeler gave us a power point presentation on the capabilities of the ship and we even got to watch an actual exercise they were doing in Italy from that control room. It was just like you see in the movies. The boys got to put on headsets and push buttons and Jake soaked it all in. The whole time he asked the cutest and most appropriate questions. I was amazed at his knowledge of the military and Pearl Harbor! At the end of the tour of the ship, they had made cookies and had ice cream for us and we got to go the mess deck and eat with the enlisted. It was so much fun! They gave Jake and Billy USS Russell hats with their name stiched in them and really treated us like it was such an honor to have us there. We were the ones that felt honored to be treated to such a rare look into the workings of a real Navy Destroyer.

After that tour, we went to lunch at a Navy restaurant there and then were driven to another area of the port. There was a group of Navy officers waiting for us there along with a survivor from the Pearl Harbor attack. We were introduced to our guide for our Pearl Harbor tour and learned he was the Chief of Staff (Ron Cox) of the whole Hawaiian naval region! He reports only the Admiral of the whole Navy! We got on the boat which was a fancy mahogany launch boat with seating around a large table and started our tour. What an amazing tour it was. We were taken all over Pearl Harbor and shown things that people never see. They closed down the Arizonia Memorial for us! We had it to ourselves and were given incredible stories and accounts from the Chief of Staff and the survivor. Jake loved it and continued to ask his great questions. One of them I remember him asking, "Did the Japanese use Kamakazees (sp?) in this particular attack on Pearl Harbor?" When we got back on the boat from the Arizonia Memorial, there was a linen tablecloth on the table and a fancy little dessert spread was laid out for us. We were introduced to the chef and the driver of the boat and then figured out the other two guys that walked around the boat continually were securtiy. We were starting to realize what an incredible tour this was. At end of the tour, they asked us to sign the guestbook and told us that our names are with the likes of every US President since the Pearl Harbor attack and other heads of state and dignitaries that get this same tour! In fact, President Bush was just on this same boat getting this tour by Chief of Staff Ron Cox in December!!! We were floored to learn that we had just been given the same red carpet treatment that Presidents do! When we got back to our car, Steve and I were so honored and speechless about what we had done that day! Not only did we realize what an incredible organization our armed forces are and what an incredibly dignified group of people it was, but then so amazed that they had treated our families like that! Thank you so much to the officers and enlisted of the USS Russell and then to the Navy for making Jake's wish come true with such a wonderful red carpet tour! Amazing!

We did so much on this trip and I won't go into everything with such detail, but that story deserved it. I am still in shock over how they went all out for us. The boys hit the beach that afternoon. We spent the next couple days on Waikiki, swimming in the pool and the ocean and we took a submarine trip down to see all the marine life off of Waikiki. They boys got to swim with the dolphins which was a special treat that Make A Wish set up for us also. They got to kiss, touch and feed the dolphins while in the water with them. One of the nights Steve and Jake went down to get mom some ice cream while I stayed up in the room with a sleeping Brandon. Jake was just walking down the street when a street vendor making bowls and hats out of woven palms came up to Jake and gave him the coolest hat! Jake loves the hat - it has a big grasshopper bug hanging off of it!

On Friday the 30th, we headed to the airport to fly over to Hawaii, the Big Island. There we went to The Volcano National Park. Although it was pouring rain, it was so amazing tosee and experience that whole area. We drove around Crater Rim Drive which allows you to drive around a crater that blew almost 20 years ago. The lava rock and vastness of the area is incredible. There were steam vents and smoke rising from everywhere and we were taken with the amazing landscape. Steve said it felt like we were on the moon and that was a perfect description. Jake and Brandon loved the time we spent there - truely an amazing site to see! After that we drove to the resort we were staying in on the other side of the island - about a 2 hour drive. What an incredible drive along the cliffy coast of Hawaii - waterfalls and crevices and the most beautiful views. We reached our resort - the Hilton at Waikola Village. It is situated in an amzing area - mountain to one side and ocean on the other and rolling green, green hills to another. Black cliffs and rocky areas along the ocean in contrast to the incredible greeness of the area. This resort was something else. Huge and beautiful with many buildings all facing the ocean. To get from one building to another you took a monorail train or boat in these canals they have made between. It was the most amazing place I have ever seen. That Saturday the boys spent 8 hours at one of the pools and the salt water beach and lagoon they have there. Steve treated me to a 3 hour "maternity bliss" massage at the spa there and loved that! It was awesome! On Sunday we went back to the airport to fly back to Honolulu, but not before we stopped to see the incredible Akaka Falls on the Big Island.

The rest of the days we spent on the beach, doing some shopping and eating at great places. We did go to a Luau that Make A Wish had arranged and the boys loved that. Jake, Brandon and I did a little hulaing on stage and Jake and Brandon loved the flame throwing guy! The last day we were there, we went to the Pro Bowl practice at Aloha Stadium. The boys thougth that was very cool and saw some of their favorite players including Ahman Green from Nebraska. Waikiki was getting very busy by the time we left on Tuesday night at midnight because of the Pro Bowl, so we were glad to have been there the week before. The boys slept on the plane back to Houston, although Steve and I did not at all. It was almost non-stop turbulence that whole 7 hour trip, so sleep was not really an option. The plane trips went pretty quickly and if I wasn't pregnant, I don't think I would have minded them a bit. They keep you pretty entertained these days on those long trips and it was well worth it to see the amazing beauty of Hawaii!

Spending time there on vacation together was the greatest thing! We love to travel and have missed it so, so much this past year while Jake was on treatment. That's the best part about a vacation for a family is you have to just spend time together without the laundry, the phone, the computer, work or anything preventing you from spending day and night with your kids. Seeing Jake getting stronger and having so much fun was the best part. He did get a cold and thank goodness we brought his breathing machine to combat that and he was limited on how much walking he could do, but it was so nice to just be away and see him and Brandon just having all out fun! It is a trip we will never forget!

We have been busy with the laundry room addition and getting snow off our roof and trying to adjust the boys' body clocks back to central time. They are having a hard time going to bed before 11 and getting up before 10 the next day. I guess school on Monday will break them of that fast. We had a snow day on Friday, so they did not go. I was on bedrest our first day back b/c of swelling and discoloration in one of my legs from the long plane trip, but that has resolved. I went to my OB on Friday and all looks good. I go back in three weeks for my glucose test (I had gestational diabetes with Jake, but not with Brandon, so we will see what happens this time) and then he told me that we will go to 2 week apts after that! Ahh! I can't believe I am getting that close - the last trimester is only 3 weeks away! All else looked good and the heartbeat was 166 for those of you that make predictions of girl or boy based on that. That is faster than the boys ever were at this point, but I still have no feeling either way and really don't think much about it. I am thinking, arrive healthy and stay healthy and never become an oncology patient. Beyond that, I really don't care.

The boys spent the night with my Dad and his wife last night! The first time they have gotten to do that in over a year! They were so excited about that! Steve and I went to a bank customer appreciation dinner and then a customer's going away party last night. It actually felt ok to have the boys away from us - something I would have never been comfortable with months ago.

We have lots of apts. this week. Brandont to the ENT on Monday, Jake to the radiation oncologist on Tuesday and then for his monthly clinic apt for counts, port flushed and check-up with his oncologist on Thursday. We have our support group that meets Thursday night too. So back in the swing of things here and all is well.

Steve is on the roof right now, removing snow. He rented a huge lift to get up there and he and his buddies have been cleaning roofs all over the neighborhood this weekend - Man Heaven! Many leaks have started from ice jams to our neighbors - hopefully we can avoid that from happening. Thanks for checking on us!

Don't count the days, make the days count!!!

Love, Kellie, Steve, Jake and Brandon :~)

Wednesday, February 4, 2004 9:56 PM CST

Hey, Everyone!!! We just got back from Hawaii this evening from Jake's Make A Wish trip. I will fill in the details sometimes when I'm not so jet lagged and feeling like I'm still on very bumpy plane rides like we had today. Jake and Brandon are great. We had so much fun on our trip. Just wanted to let you guys know where we were and that we are home now and all is well. I guess it was sand and waves we were seeing out our window - not snow! But we are seeing the snow now and looks like we will be seeing more tomorrow!

Thanks for the notes in the guestbook and for checking in on Jake. Our trip was FANTASTIC and we will have pics and details coming soon!

Love and goodnight! Love, Kellie :~)

Wednesday, January 28, 2004 2:52 PM CST

Hello!

Today is the one year anniversary of Jake's miracle surgery! Today is certainly much better than last year! What a wonderful gift we were given on this day last year! We were given our son and his chance for survival regardless of what the pathology results came back with. Steve and I both felt that regardless of their findings of benign vs. malignant, we would always be thankful that at least we had the chance to even begin further treatment with Jake's survival from his surgery. Thanks to Dr. Hellbusch (neurosurgeon), his partners, the other docs there and the surgery nurses for saving Jake on this day last year!!!!

All that snow makes it seem like a white sandy beach out our window. Then the drifts almost seem like ocean waves! 14 inches! Wow! We haven't had snow like that in so, so long!

Anyway, we are doing great! Jake is feeling wonderful and we are doing good! Thanks for checking on us! We will update more later.

Love, Kellie, Steve, Jake and Brandon :~)

Sunday, January 25, 2004 2:46 PM CST

Hey, Everyone! It's snowing here today - in the 20's and a beautiful snow! At least it covers up all the brown. Should be back in the 40's this coming weekend, so it won't last long, but it's nice it came to visit for a while.

Jake is great! We have had a busy weekend doing stuff around here and he continues to feel so good. He was Wildcat of the Week this week at school, so he got to take some of his favorite things to show his class, including a set of baseball guys he got from the poke prize box at the clinic this year and his signed Texas Tech Football. He, Brandon and I all had a cold, but are over it now.

Josh Larson was discharged from the hospital today - thank goodness! He will start radiation tomorrow. Please have them in your thoughts as they start this new phase. It has been a rough couple of weeks for them, but somehow they are holding up well.

I went to the funeral of one of our buddies from clinic on Thursday. A 17 year old boy that died from Luekemia (ALL). Thanks to Laura Ekborg for watching Brandon so I could go! We spent so many hours with them in the clinic this year with he and his dad. Jake always loved it when he was up there as it was heaven to him to have an older boy watching and laughing at his antics. To say it was difficult for me to be there would be a huge understatment. When his parents were standing by the side of his coffin at the beginning, all I could think was that could be Steve and I. Plus it's just so sad to see a 17 year old suffer and die from cancer.

Then Liz (Josh's mom) just called me and said that she saw another friend of ours on the way out from the hospital today. Her little son who is 3 has relapsed from Luekemia (ALL) and is now heading for a bone marrow transplant. UGH! Plus another friend of ours has spent the week up there with her little girl (4-ALL) who is having all kind of problems with her counts and her liver. UGH again! It just never stops! Like the song says, "I don't understand how we can put a man on the moon, but still need a place like St. Judes." When will we start spending some major money on childhood cancer research? I know it's rare, but it's the leading disease killer in children and the treatment is as debilitating as the disease.

Ok, enough being negative. Jake is doing well and so are so many of these kids and we just have to have faith that the others will be victorious as well. I can channel this frustration into our In the Arms of Friends Foundation and encourage others to help and give of their time and money and BLOOD! I need to think like Jake and focus on the prize and not the cereal in the box.

Anyway, hope you all have a wonderful week! Hug up your kiddos and if you live around here, enjoy the snow!!!!
Love, Kellie, Steve, Jake and Brandon :~)

Thursday, January 22, 2004 8:58 AM CST

HAPPY BIRTHDAY, JAKIEBOY!!!!!!

Today is Jake's birthday - the big number 7! There were many times this year we never thought Jake would see this day, but here he is - healthy and happy and as he reported this morning - bigger! "My jammies are tighter this morning, Mom!" We layed in bed together this morning and I asked him if he remembered what we did last year for his birthday. "Nope, what?" We recounted last year's birthday with us driving to Iowa City for his Embolization with me and Dad and Uncle Jeff and Amy following us in their car. It was very icy, snowy and windy that morning and the trip was a slow go. We got to Iowa City and got to the nuerosurgery clinic and ended up there for 5 hours - 4 of those hours waiting in one of the exam rooms for the various docs to come check Jake out and waiting for a room. 4 hours in a little exam room for his birthday! They wouldn't even bring him food - Steve had to go on a mad dash to look for vending machines before the next doc came in. Not an easy task in a hospital that is the size of a small city. Jake and I talked about getting up to his room and getting his IV and then having his Embolization in the morning. I'm rehashing the whole terrible day, thinking what a rotten birthday that was for a 6 year old and then Jake says, "Yeah, that was a great birthday in Iowa, Mom." Unbelievable. Then I realized as I was talking about waiting and getting his poke and the bad rooms there, he was talking about when we stopped at the gas station and he bought a Lego set, the sign and the small gift they brought up to him when we got to our room and the game he played in the playroom that night. That's why kids do so much better through treatement - it's not about the cereal to them, it's about the toy inside. Got to love Jake's spirit - it has gotten us so far this year.

Oh his hair - it's so funny how he does not want it to come back in. I asked him last night what it feels like with all that hair growing back in. "I don't know, Mom, sometimes it's itchy. I just know I'm not happy about getting hair again. All the combing and washing. I just like being bald." I can't believe he is still saying this. It's a good thing as his hair is going to be funky. The side and back that were radiated have nothing growing on it. Some parts are so smooth, it feels like baby's skin. The part right above that area is patchy in some areas and the rest is coming in dark. So it's good he just wants to shave it when it does come in. His eyelashes that are coming and and his eyebrows are so cute, though. It's amazing how those give a face so much character.

Jake has done well with his cold. We have only had to do 3 days of breathing treatments this time and it seems it's on it's way out. It feels great not to have to worry so much about a cold and if it will send us to the hospital. That is just the worst feeling. It makes me so sad for all the chemo kiddos and their families that are fretting about a cold turning into something worse right now. Sometimes I feel guilty about Jake doing so well and us not having to battle when we have so many friends that are suffering still.

We are having the family over tonight for Jake's birthday. He needs not one more present, but of course that's his favorite part. It will be nice come February to have it be about someone other than Jake. He has had some problems with not getting all the attention that he got at the hospital. He would get tired of it at times, but I think he misses it now at times too. Brandon's birthday is in February and that boy could use a little spotlight. He has been such a great kid through all of this.

Prayers today for Daniel's (17) family as he has lost his battle with Luekemia (ALL). Also continue your prayers for Josh Larson (link at the bottom) - his fever is lower and he is feeling better, but he's not out of the hospital yet. He's waiting for more white blood cells and no fever at all. Prayers for Brant and Tanner too (links at the bottom) as Tanner is needing lots of transfusions (4-5) to get through each chemo and Brant is waiting on results of his latest MRI. And don't forget our buddy Cameron who just had a long round of chemo here in Omaha. I got to talk to his mom for quite a while the other day. She is so much fun. He has a white count of 0 and is running a little fever after just getting back home to Remsen, IA. He is at www.thestatus.com, last name "miller", password "hawks 1". I know all these families would love a visit and guestbook entry from some of Jake's fans.

Thanks for checking in on us! Your support is so appreciated!!! Thanks to all of you that have given so much of it this year to our family. Jake's birthday is just as much a celebration of the friends, family and great medical staff we have been blessed with as it is his 7 years, because we couldn't have made it this far without you! Have a great rest of the week!

Love, Kellie, Steve, Jake and Brandon :~)

Monday, January 19, 2004 10:19 AM CST

TUESDAY, JANUARY 20TH - 3:50 PM
Urgent prayers needed please! Josh Larson has RSV which can be very serious in immune suppressed children of any age. His fever spiked to 104 today. They just started him on a strong antibiodic to prevent pneumonia. We will keep you posted. For now radiation has been put off until Monday! Please pray for Josh's ANC to come up so he can fight this virus!

Hey, Everyone! Please have Josh Larson in your prayers today. They were admitted late last night to Children's with a fever and very low white blood cell count. He has had a cold with a bad cough. Liz did say he slept well last night and hopefully they can get out in a couple of days. He is supposed to start radiation on Wednesday, so hopefully they can do that or at least start it still this week.

Jake is doing great and we had a good weekend. Saturday we had Jake's party with his friends. It was so much fun watching him run around and have a great time. He's his old self - full boar and ready for action. We had it at Kid's Complete - it's like a kid's gym. They had games and did the parachute and played in the ball pit. Jake had his party there last year too and wanted to go back this year without his tumor! It was one guest we were glad not to have back this year!

We went to the UNO hockey game at the new Quest Arena Sat night. It was a lot of fun and the boys were really into the game. Unfortunately UNO lost, but we had a great time. We haven't done anything like that with the four of us in so long. It was great just watching the boys' faces throughout the night.

Sunday we went to church and spoke about Jake's story and the importance of giving blood. The church is dedicating this month's blood drive to Jake. Thanks to Nate and Donelle Underwood for your kind words and help in getting it all arranged. Hopefully Jake's story will inspire some first time donors and remind others to give on a regular basis. If every donor gave just one more time a year, there would never be a blood shortage!

Jake seems to have developed a little cold this weekend and I am feeling it some today myself. He seems to be handling it well, though. Otherwise I am feeling good too. The tummy gets bigger by the day and baby moves a lot. The boys are constantly telling me "Be careful, Mom" and giving my belly kisses.

Thanks for checking in on us. Have a great week!

Love, Kellie, Steve, Jake and Brandon :~)

Thursday, January 15, 2004 7:17 PM CST

UPDATE MONDAY JANUARY 19 -
PLEASE HAVE JOSH LARSON IN YOUR PRAYERS TODAY!!! He was admitted last night with a fever and an ANC of 40 (dangerously low - means you have little to no immunity). He has a cold with a bad cough. Hopefully they can get out in a couple of days. He is supposed to start radiation on Wednesday.

Hey, Everyone! Thanks for stopping in! Jake has had another great week! We continue to be amazed by his energy, appetite and happiness with everything. His teacher says he is doing great at school, and she notices an increase in his activity level. It feels so incredibly good to see all this - I can't even begin to explain the joy it brings to see your child that suffered and fought so to be just loving being 6 - almost 7! Jake's birthday is the 22nd! He is having a party with some of his friends this Saturday and then with the family on the 22nd.

Jake went to the ENT on Wednesday and his hearing is normal! We are pleased with this, but realize that the effects from radiation may not be seen until months or years from now. We will go back in may for another test and more cleaning of his ear canal. Steve said Jake was in there so long, pulling stuff out of his ear, we had to pay 2 co-pays!

Then today we went to the Oncology Clinic up at Children's for Jake's 1 month check-up. When we got there, Christy had his banner up! Jake was so happy to see it. At the Oncology Clinic when you are done with treatment and your scans are clear, you get the official nod from the staff that you are done with a huge banner that is put up and signed by all the staff. It felt so good to see it up there as I have admired other kids' banners when they are up and longed to see Jake's name on there. They accessed Jake's port, drew blood from it and then hepranized it. Jake's blood counts were excellent! His white blood cells were 9000, platelets were 294, hemaglobin was 11 and his ANC was 7900 - all well within the normal range! Dr. Abromowitch thought Jake looked great. He had even gained 2 pounds! I think Steve and I were both relieved after today's appointment that all looked well. It's such an unnerving feeling being done with treatment - it's great, but we worry about every little pain, redness and sniffle. It's hard not to overanalyze everything, but I'm sure it gets easier as time goes on. We just have to get used to the balance beam under our feet for a while. The confident smiles of the oncology staff today helped tremendously. They are so great up there! I think Steve and I feel more celebratory about Jake being done today than we have this whole time.

We went and saw Josh and Liz Larson today - continue your prayers for them. Josh handled this new round of chemo so well - he is such a tough kiddo! He gets out of the hospital tomorrow. He starts radiation next week. Just keep swimming, Josh, just keep swimming!

Hope you all have a GREAT weekend!!! Hug up your kiddos and make that appointment to give blood - please, please, please!!!

Love, Kellie, Steve, Jake and Brandon :~)

Sunday, January 11, 2004 10:11 AM CST

NEW PICTURES ON THE PHOTO PAGE!Goodmorning!!! What a great time we had last night and what an awesome turnout we had! There were around 130 people throughout the night, and we appreciate everyone coming and helping us celebrate Jake's victory! I hope everyone that came had a great time as well, and I hope all of you know how much we appreciate all you have done for us this year! It takes the effort of so many to make a child well from cancer, and we are so appreciative of all the hands, prayers and help that were laid upon us this year in that effort. A special thanks to Blaine and Penny Wilcoxson for all your help with the party!

Last week Jake went to school everyday and all day! That is the first time he has done that in a year! I went up and had lunch with him on Thursday and it was so nice to see him full of energy and so happy there. His report card said once again this semester he was there just half the time, but thanks to Mrs. Pratt, Mrs. Sobczak and Jake's hard work, he has not missed a beat with anything. I am just so proud of him bouncing in and out of school for a year and then just hoping back in this week like he was never gone.

We got an awesome gift last week from the Texas Tech Football Team. It is a beautiful stiched football with the Texas Tech Logo and hand-signed by the whole team! Thanks to Toby Cecil who played on the team that sent that up to Jake. It even says on it, "To Jake. Get your guns up!" Thanks Red Raiders!!!! When you are not playing Nebraska, we will be rooting for you!

Nebraska football has a coach - miracle! Hope he's not a dud.

Jake has appointments on the docket this week. Wednesday we go see our ENT and she will clean out his radiated ear as it is full of debris from his radiation burn. Then we will test his hearing. He had his hearing tested at school a month ago, and it was within the normal range. Radiation effects can take years to show up, so we will test his hearing regularly and stay on top of keeping that ear cleaned out. Then Thursday we have our Oncology Clinic appointment. He will have his port flushed, see Dr. Abromowitch for a check up and have his blood counts checked.

Saturday is his birthday party with some of his friends, and then his official birthday is on the 22nd. He will be 7 years old! Wow! So glad to be seeing this birthday and to have Jake here to celebrate it. Last year we drove to the University of Iowa on the 22nd, and Steve and I got him an Embolization Procedure for his birthday. I don't think we will be spending that much money on him this year! :~)

Please keep up your prayers for the Larson family! Their link is at the bottom of this page. Josh will go in for chemo on Monday, and they are making plans for radiation. It was so great having them ALL here last night at the party. We had two other special little boys here last night that are survivors too - Charlie and Jacob. It will be great seeing all 4 of these little boys pile in a car someday when they are teenagers on their way out for a night of cruising chicks together!

Thanks for stopping by!
Love, Kellie, Steve, Jake and Brandon :~)

Wednesday, January 7, 2004 10:09 PM CST

Well this is the night. This is the night we knew that something was probably wrong with Jake just one year ago today. We had already made our appointment with Dr. Harrison (our pediatrician) to see him about Jake's intermittent headaches that would be the next day. We went to sleep and then Jake woke up sometime around 2 or 3 saying he had a headache and he felt sick to his stomach. Steve and I were alarmed and scared to death. We had been reading on the internet; we knew a classic sign of a brain tumor was waking up at night with headaches and that vomitting was a mitigating factor. We took Jake to the toilet, and all of a sudden he said, "I don't feel sick anymore and want to go back to bed." It was over as fast as it had started. He was back in bed within 5 minutes of waking us up. Steve was beside himself with worry. Me, you know, optomistic to a fault, said not to worry. We don't know anything and we'll just see what Dr. Harrison says tomorrow. Steve, with his sixth sense that led us to make the appointment in the first place, said one of the most chilling things I have ever heard that cut like a knife, "I think this is the end to life as we know it." Deep down I knew he might be right, but I scolded him for being dramatic and told him we wouldn't worry until there was something to worry about.

By morning - the 8th, I had convinced myself there was nothing wrong. Jake went to school and stayed there without incident until I picked him up early at 1 for his 1:30 appointment. All 4 of us went, and Dr. Harrison did all the normal neurological tests and felt Jake's head and did not seem overly alarmed. There was something, though, about the waking up at night thing that did not sit well with him. Being the great doctor he is that didn't just tell us, "It's probably nothing. Just watch him and let me know if anything else happens," said instead, "Lets just do an MRI today to rule out anything to worry about." They called over to Children's and had an appointment for us at 3:30. We went to McDonald's to pass the hour or so we had before the test. Brandon was teasing Jake, calling him "headache boy." Oh brotherly love!

It was so warm that day for January - in the 60's. I remember I had a shirt on that I just bought at Target that still hangs in my closet. I refuse to ever wear again, but for some reason can't seem to throw it away either. We got to radiology to do our first dreaded IV poke. I went back with Jake while Steve stayed with Brandon in the waiting room. We sat in the "poke chair" as Jake calls it, as they struggled with him to hold still to put the needle in. Tears were streaming down his face and then to really top it off, blood squirted everywhere once he was accessed to really send him into a frenzy. When it was over, Mike the MRI guy and Patti the Poke nurse (Jake's names for them) led us into the room where I could set my purse and Jake could pick out a movie to watch during the MRI. I remember feeling so strange in that place and now Mike and Patti and the MRI room are so familiar to us. Jake picked out "Dr. Dolittle" and was thrilled he could watch a movie. They put him on the table, taped down his head and put the cage over it. When they were doing that I thought, "This is the hardest thing I have seen my little boy go through." Ugh - I had no idea. I sat in a rocking chair with earplugs on with Jake while the test was going on. He sat so still through the whole thing. He loves doing the MRI - he thinks it's so cool to be in that space ship machine with headphones on watching a movie. I hate it. The loud bangs that come from that machine make me so nauseated now.

As the test was going on, I was rocking and praying, but also really thinking that nothing was going to be wrong with my little boy. How could it be? Then the door opened suddenly only after about a half an hour and Patti called me out in the hallway. "Dr. Harrison is on the phone," she said, "and wants to talk to you." Then I knew something was horribly wrong. They had gotten Steve and Brandon too and led us into a little room and handed me the phone. "Kellie, I want to be there in person to tell you this, but I know you will know there is something wrong when they say you have to be admitted. The MRI shows there is a tumor in Jacob's brain." I started crying and kicking my feet into the floor. "No, no, no." I said. He told me we were being admitted and he was contacting the nuerosurgeon and he and many other doctors would meet us up there. Through my tears, I made him promise to treat Jake like he was one of his own and personally pick out each doctor. I didn't care who worked with who or who was supposed to take the next case, I only wanted people that he would hand pick. "Promise me you will do that," I said. "I promise," he said. And he did and he always has.

I think I've told this story before in this journal. I will stop here as the rest of the night was doctor after doctor and meeting Dr. Hellbusch and finding out Jake's case was extremely life threatening and surgery would be very hard, if not impossible. No one gave us percentages and I'm glad they didn't. I know they were probably less than 50 percent; then only after the Embolization. The whole thing was a miracle after that and remains so. I can't believe it's been a year and that this is the night that Steve spoke those words that ended up being so true. We are in a better place tonight and so thankful to have a much better chance for many years with Jake in our lives than we had a year ago. We have a big thing to celebrate this weekend - not just "Done With Chemo," but celebrating a new start with life and a year of miracles that started tonight with Jake's nausea and headache in the middle of the night. Even in the two weeks after we found his tumor and his Embolization, he never had a headache at night again. He was never was nauseated again. Some of our many angels were working hard one year ago tonight to make Jake sick enough to cause alarm.

Please keep up your prayers for Josh Larson. He had a bone scan today and will get results tomorrow and then has more tests on Friday. We have faith that they are clear and also that all will go well with their week of chemo starting on Monday. Our other little friend from Remsen, Iowa, Cameron, is also doing a long chemo stay next week. We will have lots of little cuties to visit next week! To visit Josh, the link is at the bottom of the page. To visit Cameron, go to www.thestatus.com. Hit "Visit a patient page", then enter "Miller" for the last name and "Hawks 1" for password. Brant and Tanner at the bottom of the page could use a visit and well wishes too! Brant just finished radiation for a brain tumor and I am so glad to have found their family through our good friend Rebecca Ferley that lives in Virginia. Tanner is another Ewing's of the skull child and is on chemo #10 out of 14! She is doing well, but is needing 4-5 tranfusions a month to keep her up to speed. Please give blood - it moves out as fast as it comes in. Don't think someone else will do it - they aren't.

Thank you so much for checking in on us and our friends. These websites mean so much to all of us - I can't explain it - they are just so dear to our heart as is every tic on the counter and every guestbook entry. Make it a good one and include lots of snuggle sandwiches!
Love, Kellie, Steve, Jake, Brandon and the Flexible Baby :~)

Tuesday, January 6, 2004 7:11 PM CST

Hey, Everyone! Josh Larson is home and they are able to update his site now (see link on the bottom of this page). They are planning on starting chemo this coming Monday. You will have to visit them and leave them a guestbook message as this is the hard part that is starting now - step two of making Josh well!

We are all good. Busy with this Sat. being Jake's Done With Chemo party - trying to get the house somewhat presentable. Lots of dust around the house with our laundry room add-on going on. We hope to be done with it in sometime in February.

I had the baby's ultrasound today and all is well and we found out that it's a....flexible baby! Ha! No we didn't cave and find out. But the baby had his/her feet up by it's head the whole time. All looks normal and good and we are so relieved. I have never worried about these prenatal tests like I have this time. I guess now we know how terribly wrong these tests can turn out. I brought some pics to show the boys and they thought they were pretty cool. They are still rooting for the names AJ and Sally and really hoping it's a boy. 100% sure those won't be the names and 50% on the other thing. Dr. Ryder said all should be fine for the Make A Wish trip.

Jake is doing well. His hair is just starting to sprout. He has been at school two days and both days he has hit his head - UGH! The first day was a pretty bad one and the nurse called us and I was up there checking him out. Today's was just a little deal I guess, but still nothing the parents of a child with missing skull really like to hear. He seems no worse for the wear. Jake is not really steady on his feet, so clumsy kind of fits his description right now.

Thanks for checking on Jake and our family! Have a great day and try and stay warm - maybe it will break over 20 tomorrow!!!!
Love, Kellie, Steve, Jake and Brandon :~)

Sunday, January 4, 2004 10:45 AM CST

JOSH LARSON UPDATE - 10 AM - Josh is doing great! They moved him off the ICU to a regular floor last night and he slept well. They are trying to wean him off of the pain meds and balance some electrolytes that are off, but overall he is doing well. When I talked to Liz this morning I could hear him in the background and he sounded great! He is up and moving and hopefully they can go home tomorrow! His MRI was clear!!!! The Tumor Board meets tomorrow afternoon where they will be discussing Josh's case and plans for future treatment.

All is well here at the Beresh Household. Dad and the boys are out in the garage cleaning up from yesterday's big day of demolition and construction with the laundry room project. The electricity is done and drywall is up, so they are really moving! I am feeling good and actually got the Christmas decorations down yesterday.

We are getting ready for Jake's "Done With Chemo" party this weekend. I have been going through pictures of this past year as I want to put a little pictorial thing together. The pictures of Jake from last December in Florida and at Christmas are especially hard for me. I look at those pictures and all I can do is look at Jake's head and think of that huge tumor in there. Then I was looking at pictures of the months and years before the tumor was there and I see how healthy Jake looked. I can't wait for him to look like that again. He has been so washed out, skinny and obviously bald this year - I long for that glow that he had before. It's on it's way and his hair seems to be on the verge of making it's entrance. I was sad about the side and back that was radiated and how hair may not grow there, but since Josh's relapse, I haven't really cared. I just don't want the cancer monster ever coming back, and I know that radiation was a must for that to happen. So I am back to not really caring about hair and hearing loss, just hoping and praying and hoping and praying for clear scans from here on out.

Jake has been eating like never before! This morning he had a bowl of oatmeal, glass of milk and then some applesauce and a piece of cold hamburger pizza! I guess he is making up for lost time in the food area. I can't wait to go on the 15th for our clinic appt. and see if any weight has been gained. He and Brandon are both so ready for school to start tomorrow and now they are two very happy boys with all the snow we are getting - I think we have 5-6 inches right now and it's still going, so maybe we will get up to 8! What a great way to start the New Year with a fresh blanket of snow!

Hope all is well with you and yours and thanks so much for checking on Jake and the guestbook messages. I can't say enough how much it means to have friends and strangers following our story. Sometimes being one of the few with a child with cancer can seem so isolating, but we are so blessed for those that try hard to understand our story and support us. Please keep up your prayers for the Larson's - they are such nice people and are really holding up so well under all of this. It has been emotional for them, but at the same time they are researching and thinking about the next step to making Josh well - he will get there! Cancer no more in 2004!

Love, Kellie, Steve, Jake and Brandon :~)

Thursday, January 1, 2004 5:58 PM CST

UPDATE ON JOSH - JAN 4TH - 10 AM
MRI looks good! - he is out of the ICU and they are trying to wean him off pain meds and balance his potassium, but overall he is doing well. He is moving around and he sounded great this morning! The Tumor Board meets tomorrow afternoon and will be discussing Josh's case for future treatment. Hopefully tomorrow they will be going home!

It's hard not to go about our day and be doing normal things without thinking of the Larson's. I was grocery shopping yesterday, thinking, here I am shopping like a normal mom when Liz is sitting up in that hospital. Or here I am playing a game with my boys while Liz is watching Josh's monitors and waiting for the next doctor or the next scan. I just know how awful it is to be there and to think they hardly got a break - there is just no fairness in any of this.

The boys spent some time at Grandpa's this afternoon while we were at the hospital - they had a great time! Jake is feeling great. His hair is really taking it's sweet time coming in - not much progress there. His "duck walk" continues, but overall it is so much better and there is very little limp. Brandon and he are working through all the new toys they received at Christmas, fighting like cats and dogs one minute and then playing like best buddies the next. They have both said they are really ready to go back to school. Our laundry room redo continues - we have and electrician and cabinet guy coming out on Saturday and then Steve and his friends will be hanging some drywall after that. It looks great so far and it will be so nice having a little more room for coats and shoes and folding laundry. Plus we will be adding another body to that mix, so we could use a little more room - I could use a little more room right now just for myself! Ha! A little more room, more of the bed, more food, more seat belt - the list is endless!

Please keep up your prayers for Josh Larson and his family! You can all help families like ours and the Larson's by giving blood and donating to the National Childhood Cancer Foundation at www.nccf.org. Jay is updating things on Josh briefly in the guestbook of their website and I will continue my updates on him as well. Enjoy your weekend and thanks for checking on us!
Love, Kellie, Steve, Jake and Brandon :~)

Wednesday, December 31, 2003 5:37 PM CST

Hey, Everyone! Just wanted to update everyone on Josh Larson. They are unable to update their own site, so we will continue to update ours for people to know what's going on. Josh was out of surgery very early - it took about 1 hour to remove both tumors and they said they practically fell out of his head. He is doing great and did not have any complications! We are so happy and excited that all is going well! He is in recovery right now and will be heading up to the ICU soon. Dr. Hellbusch was very positive about the surgery and that they were able to remove all the tumors. So everything is great! Liz and Jay are very relieved, as we all are.

Jake and Brandon are doing great! Jake figured out what was going on and asked me yesterday, "Is Josh having surgery?" I told him yes. "On what?" "His head," I told him, "but Dr. Hellbusch is doing the surgery." "Oh he is the guy for operating on heads. He's the head doctor. Josh will be ok, Dr. Hellbusch will do a good job." Then last night before bed he said, "When is Josh's surgery?" "Tomorrow," we said. In a sweet and sad little voice he said, "Poor Joshy." That sums it up perfectly my boy - only you would know just how much. But today we count it as a great day and victory number one in Josh's next battle. Once again Josh has done great and come out on top. I know it will continue!

You can continue to leave messages on Josh's site (see below), they just can't update from here at the hospital. We will continue to keep everyone updated here on Jake's site. Liz and Jay appreciate everyone's support!

Thanks and Happy New Year! Love, Kellie

Tuesday, December 30, 2003 8:32 AM CST

UPDATE - 3:45 - Josh Larson will have surgery on both tumors tomorrow afternoon - the oncologist feels it's moving too fast to wait for two surgeries. They are waiting on results of a CT scan of chest, abdomen and pelvis he had this morning. Keep the well wishes and prayers coming!

Hi, Everyone. We are all good here, except we are completely devastated by the news of our friend Josh Larson's (photo of him on our photo page and link at the bottom of this page to his website)relapse. We went and saw them at the hospital last night and Josh was in a lot of pain, and it sucked so bad seeing him in that hospital bed again when he should be at home playing with his brothers. They talked to the neurosurgeon - Dr. Hellbusch, our same neurosurgeon (they are good hands) - and they are going to operate on the biggest tumor on Wednesday. Then a week later they will remove the other tumor. They are both in the frontal lobe and seem to be on the surface of the brain, so that is good news that they will be easy to remove. They are doing two separate surgeries b/c they don't like to operate on both hemispheres of the brain at the same time in case of swelling. There should not be any neurological effects from the surgery and I'm sure Josh will recover quickly. What happens after that, has not been decided. They are talking chemo and radiation, but that plan is still being formulated. Liz and Jay are holding up as well as can be expected. They are angry and sad and they should be, but they are also focused on getting Josh well.

I guess this doesn't make us more scared for Jake; we already know that remission is tenuous and there is no promise of how any of it will go. It may make me a little more nervous, but most of all we are just feeling so sad and dejected for the Larson's and their situation. I never thought that any of us would be facing a relapse this early in the game. Like I said, there are no promises.

Thanks to Blaine and Penny Wilcoxson for watching the boys last night and for those that offered. The boys had a great time and the boys are still sleeping (it's 8:45!), so you may have actually worn them out! Jake continues to feel good. We have been putting drops in his radiated ear to soften up all the gunk in there and it actually is pushing some of it out. We go on the 13th to have it cleaned out and his hearing tested by our ENT. We have our clinic apt. on the 15th for Jake's check up with the oncologist. We go on the 6th for baby's ultrasound and our monthly appointment. The 10th we are having a done with chemo celebration for Jake and then his birthday party on the 17th with his friends. Then we have our Make a Wish trip to Hawaii at the end of the month. We are getting psyched for that! Stick in my birthday and both of Steve and I's brother's birthdays - Whew - January is hoppin'!

Happy New Year to everyone! We will keep you updated on Josh - please visit his site and leave his family an encouraging note in their guestbook - it really does help to read those! We have no plans for New Years - not really feeling like celebrating. Our thoughts are stuck in a 5th floor room of Children's hospital.

Love, Kellie, Steve, Jake and Brandon :~)

Friday, December 26, 2003 11:35 PM CST

URGENT PRAYERS NEEDED PLEASE!!!!!!!!
Monday, December 29th - 4:30 pm
Our good friend, Joshua Larson (see link at the bottom of the page) has relapsed! We are devastated to say the least as are his parents. His last scans were just 6 weeks ago and there was nothing there! He is just 9-10 weeks from his final chemo! Now he has two tumors in his brain and one is 5 cm already! Please, please pray for Josh and his family! They have been our partners through this whole thing and we want nothing less than a complete cure for Josh. They are talking to the neurosurgeon tonight and making lots of calls around the country to see what the next step is. Josh's cancer is so rare, there are no protocols or set answers.

There is an all city blood drive at Millard North High School - 144th and Pacific, Monday, December 29th from 7am to 7pm!!!! Please go give blood - there is a huge shortage right now! To make an appointment call 271-2588! Thank You!!!!!

Hello from the Beresh house! All is well here - Jake feels great!!!! It is just so incredible to see him feeling so, so good and with so much energy. I realize now how miserable he must have felt this whole year, but he just never gave the pain or the crumminess the time to really get him down. What an amazing kid! On Christmas day when we were leaving to go over to Steve's dad's house, Jake forgot something in his room. "Run up and get it," I told him. So that's just what he did - HE RAN!!!! He got about halfway to the stairs and he said, "I'm running, I'm really running!!! It's a miracle! I'm running!" He hasn't really been able to run in a good 6 months due to the foot drop and then leg breaking incident. Sometimes he just takes off running back and forth through the kitchen just to see if he can still do it. His limp is much improved, obviously. He still has a slight limp on the leg that was broke, but overall it is so much better! What a joy to see him feeling so good - color in his cheeks, eyebrows making their debut and an appetite like no other!

Christmas was great! It felt just like before - no huge fanfare or feelings of Jake being a miracle - just us enjoying the Holiday with the family. It's nice to be able to do things and just have them feel normal - this is so hard to explain. When we have done things this year - like the 4th of July - it has felt like we have to enjoy and savour every minute because it may be Jake's last. It was so good with this Holiday,though, just to see Jake as a normal kid and to relax and be calm. We didn't feel that pressure to make this Holiday THE BEST because it may be his last - what an incredible gift to just love him for being a kid - not a miracle cancer kid.

Christmas Eve we spent at my brother's with his family and our Dad and his wife, and then Christmas Day was at Steve's Dad's house for the extended Beresh clan. It was nice seeing a lot of family that we haven't this past year as we have missed most of the family gatherings. Christmas night we spent with our friends Joe and Brooke. Then today the boys and I got to spend some time with my great-aunts Donna and Nelda that were in from McCook. Lots of fun and lots of toys, and the boys just go from one to the other in pure delight!

Jake's heart echo, EKG and creatin clearance that we did last Thursday all came back normal! I had his doc check that pain out that he was having on his head and she said since it's more painful when you press lightly than when you really press hard, it seems to be nerve pain from things reconnecting and regenerating in there. It seems better this week. We were relieved to hear she didn't think it was anything to worry about.

Please say prayers for our little friend Tanner (Ewing's Sarcoma) (link at the bottom of the page)- she is having trouble with her counts and has had many blood and platelet transfusions. Prayers too for our friend Cameron (rhabdomyosarcoma) from Remsen, Iowa - his parents just found out that his tumor is still inoperable and that status may never change. You can visit him at www.thestatus.com - last name "Miller", password "hawks 1". Also, prayers of joy for our friends Josh (plueropulmonary blastoma) and Brant (ependymoma). Josh is getting hair and looking and feeling great. Brant is finishing up his radiation this week - a huge relief to him and his family! Their links are at the bottom of the page as well. Please leave them a note in their guestbook of congrats or encouragement. Leave us a note too and let us know you stopped by. We appreciate you all so much that have followed our story - you will never know what it mean to this family that people take time out of their day to check on our little boy!

Blessed New Year to everyone!!! Please remember all the kids out there that are fighting for their lives (there are so many!!! Cancer is the second leading killer of children - only second to accidents!) and know how blessed you are not to be in their Parent's position. I have said so many times before, our story pales in comparison (thank God!) to what some people have to go through and endure in this battle against childhood cancer. It's such a tribute to the human spirit reading the stories of such strength and love of these parents. So hug up your own kiddos and GO GIVE BLOOD to help the others that aren't so fortunate!!!!

Love, Kellie, Steve, Jake and Brandon and baby #3 who is kicking a lot now, which has to be one of the most awesome feelings in the whole world!!!!

Monday, December 22, 2003 2:01 PM CST

Hey, Everyone! There are new pics up on the photo page, so check them out! We are all good. Jake is feeling great and both boys have been busy all day opening and playing with gifts they got last night from Christmas at Grandpa's. I have been busy putting all of it together and trying to figure out why toy companies package things to hurricane standards! Jake's eyebrows are starting to grow back in again I noticed today!

We had a good weekend. Did a lot of stuff around the house. On Saturday morning, I opened the fridge and said to Steve, "Do you know what you are looking at?" "What?" he said. "That's called a wiped down and cleaned out fridge - I know it's been a year, but that's what one looks like!" Everytime we open it now we marvel at how nice it looks. Oh the simple things we take for granted. We started on our laundry room redo - Steve and our friend Blaine tore out the floor on Saturday night and then Steve and the boys ripped out the closet in there on Sunday. The boys loved that! Then last night we had Christmas with Steve's immediate family - his Dad and his brother Jeff and Jeff's girlfriend Amy. We opened gifts (thanks, Gary for everything!) and then Gary surprised the boys with a limo ride downtown to look at the lights! The boys loved it! They loved drinking out of wine glasses (water and chocolate milk) and feeling like stars. It was pretty warm when we got into the limo and we had some trouble trying to figure out how to turn down the heat, so Brandon just got too hot and decided to take off his shirt. So here he was the whole way shirtless, chugging chocolate milk out of a wine glass and riding in a limo! It was great!

Some friends of ours (Charlie's parents - see photo page) told us that coming off of treatment and that year following is the scariest part of the whole thing. They should know, this is their second child that has had cancer (older sister Morgan had Rhabdomyoscarcoma 5 years ago and is now doing great). They weren't kidding! Friday night Jake told me that his head hurt to the touch right behind his affected ear (pain at the tumor site is a symptom of Ewing's). All day Saturday and Sunday Steve and I were sick with worry about the whole thing. We kept telling ourselves, "he just had scans", but these things grow so quickly, UGH! It's just hard not to worry. Last night Jake said it stopped hurting and it doesn't hurt today, so hopefully it's just new bone growing and things shifting in there that is causing him pain. We are doing a Creatin Clearance - collecting everything in the pee form out of Jake for 24 hours and keeping it nice and cool in the fridge - no, no, that's not juice, honey! :~) - so we will be taking that to Children's tomorrow, getting a finger poke, having an echo and EKG (chemo causes heart damage) and we will stop by the oncology clinic and have them take a look at his head.

So we are doing some baking the next couple of days and then going over to my brother's house for Christmas Eve and then over to Steve's dad's house for the extended Beresh clan's Christmas on Christmas day. We both have very small families, so nothing is too much of an affair. We are forgoing church service this year and probably will until spring break just to take one less place out of where Jake can come into flu's way. It's basically become, if we don't HAVE to go somewhere and if we can't go when there's not a big crowd, we don't go. At Children's now there are no visitors under 14 allowed on the floors - even siblings - thank goodness we are done as Brandon would have been a basket case not being able to spend time with us in the evenings when Jake was in for chemo.

So many of the Caringbridge kids we check on have died this week, including a kid with Ewing's. And still more have relapsed or been diagnosed with a secondary cancer caused from their treatment. It's so sad to read how other parents are suffering the loss of their children and how unfair it is. One mom wrote, "Where are the fricking cures, where are the fricking cures?" How frustrating we can clone animals, but we can't stop so many children from dying of cancer. Not for us to know the why's behind I guess. Just for us to support those going through it.

PLEASE GIVE BLOOD!!!! The Red Cross is at an all time low with this flu bug really limiting donors. Even if you have never done it - go do it - make it your Christmas gift to someone that needs it just to get through another day.

Happy Holidays to all of you from our very happy and thankful family!
Love, Kellie, Steve, Jake & Brandon :~)

Friday, December 19, 2003 12:11 AM CST

Hello Everyone! Wow, so many hits the last couple of days just to check on us and Jake's scan results - how incredibly awesome your support is!!!!

I talked to Anisa at the Oncology clinic this morning and along with his brain MRI and CT of his lungs, the bone scan is CLEAR!!!! We are ever so grateful! It is only now that I write this in this journal that I realize and love the words we heard yesterday and today. The buildup to scan time is brutal. I noticed yesterday when we got home that for two days I have done nothing around this house. I haven't unloaded or loaded a dish in the dishwasher, cooked, picked up or done one load of laundry even though it piles up. I guess everything just stops until when the scans get close and then until they are over. For those of you that were there on Jake's surgery day and you agonizingly waited for us to emerge from the consultation room with Jake's nuerosurgeon to know if he was alive or dead, that is how the last couple of days have felt. That is how we have felt a lot of times this year, waiting for the next word from a doctor or nurse to tell us if Jake is making it or not. That pit in the bottom of your stomach that with each passing minute just gets deeper and burns more at every fiber of your being. Your mind wrestles between utter terror and panic and the rational side that's saying, "stay calm until we know something." Only thing is we have to walk around with that feeling and go about our daily lives smiling and being happy for the boys while in our minds we are there in that waiting room over and over again, just waiting for word on Jake. But now the word is good! We are so utterly grateful and happy. Our Christmas present is complete. Although sometimes it seems difficult to celebrate because we know in a couple of months we do it all over again and maybe we will jinx something if we do, we are happy for today and we thank all of you that feel our joy today as you have followed our story.

Jake was such a trooper yesterday. We got to the clinic around 9:30 and had his hands and one arm all numbed up. He hates IV's and has not missed having them with his port in place in his chest. But with needing a clear look at his lungs, we cannot access his port for scans, so an IV is the only choice. To say Jake has worried about this for days would be an understatment. He did well, crying and full of panic, but he held still and the great nurses of the Children's Hem/Onc Clinic got it in the first time. Being that I am pregnant and not really wanting to spend much time in the radiology waiting room with sick kids getting chest x-rays, I stayed up in the Oncology clinic, while Steve and Jake were down in radiology. Jake did his brain MRI and then the chest CT. He and Steve came up to play and have lunch and then went back down for the bone scan and skull x-ray. When they came back up, the Rumproasters from the Omaha Beef arena football team were up in the clinic with Santa passing out Beef footballs - Jake loved that! Then they had to access his port, draw labs, flush and hepranize it. Dr. Abromowitch gave him a check-up and just before we were about to leave, Anisa (Onc. nurse) and Christy (Oncology Child Life specialist) (and both very special friends) came to me with a wrapped gift. Inside were the MRI and CT reports. What a wonderful gift!!!! We got home around 6:15 and then had to hustle to get to Brandon's preschool program at 6:45!

Along with the wonderful gift we received with the scan results, we had another wonderful gift Tuesday night with the First Annual Wheeler Elementary blood drive. Amy Yarnell and Jodi Sindelar put the blood drive together in honor of Jake and his year of battling cancer. 57 units were collected!!!! The goal was 35! That will help over 171 people needing blood!!! Plus, over 30 people registered with the National Bone Marrow Regsitry! Amazing! Thank you guys so, so much for all your hard work. Thanks to those that volunteered their time to make it happen and thanks so much to the donors that came out to donate! There were many that were inspired by Jake's story and donated for the first time (Way to go, Jennifer). I hope it becomes a regular thing for them. We were on the news that night too. Wheeler Elementary is the best! What an honor to have such wonderful people in our lives. Thanks again!

Well, next on the list is Christmas. Needless to say it will be a very special one of all out joy at our house! We have Jake's good scan results, good results with the baby's quad screen and one very sweet and healthy other little boy. What more could we ask for? Oh, Jake's blood counts were good. WBC=4480, hemaglobin=10.1 and platelets=378. Another gift! I will update in a couple of days. Thanks again for all your kind words of support - sign the guestbook on your way out and let us know you stopped by! Merry shopping and wrapping!
Love, Kellie, Steve, Jake and Brandon :~)

Monday, December 15, 2003 8:14 PM CST

UPDATE:Thursday 6:15pm

We received good results on the Brain MRI and CT of the chest. We wanted to put that on as soon as we heard. We just got home and we have to be at Brandon's Christmas Program at Pre-School at 6:45. Kellie will update better later, as we await the bone scan results. The two we did hear about are GOOD!!!!!!!!!!!! Steve

Hey, Everyone! Well, this past weekend was a weekend of Christmas parties! I had the Christmas party for my business on Thursday night, we had Steve's Mechanical Contractors Christmas party on Saturday night and then a Make A Wish Christmas party on Sunday. All went very well and were lots of fun. Thanks Make A Wish for such a fun time. It was great seeing friends and that the kids had a chance to see Santa as I won't take Jake to the mall with all this flu bug going around. We got to see our friends Josh and Charlie and I finally got a pic of the three of them. I will have to post it later on.

Jake is feeling so, so awesome!!! This is the first time he's been over 3 weeks without chemo and wow the kid feels great! He's happy, energetic, going to school everyday and not tired afterward, and we think he's gained some weight. We will see on Thursday when we go in for scans and his checkup. I cannot tell you how great it feels watching him look and feel so good. We start at 9 am on Thursday with his scans. He will have a brain MRI, skull x-ray, CT scan of his chest and a bone scan. Then we meet with Dr. Abromowitch at 2 and hopefully will have some of the results of the tests. Jake will have his port hepranized and have blood counts taken that day too. I will post on here Thursday afternoon after we get home and tell you what we know. Please say prayers for clear scans.

Just getting ready for Christmas and watching the beautful snow falling tonight. Probably won't add up to much, but at least it will freshen things up.

Brian the babysitter got revenge on Jake at Game Cube football on Saturday night. Thought I better post that so his 15 year old ego wouldn't be damaged forever and ruin his chances with all the senior girls that are pining for him! Seriously he is a great kid and a good sport! We love having him and his sister Chelsea babysit!

Thanks for checking in on us and I will post here on Thursday afternoon whether we know results or not. We feel pretty good and calm about them, just anxious to get them over with. Enjoy the days! Love, Kellie :~)

Wednesday, December 10, 2003 8:08 AM CST

Hi! The boys have the day off today from school because of SNOW, so the boys got their wish. It was a mess here yesterday, and today is very cold and very windy, but it is so darn pretty out there with all the snow! Jake and Brandon were out in it last night and loved every minute of it. They came in in desperate need of some hot chocolate!

Jake is doing great! He started back to school on Monday. When I dropped him off it hit me that he will be going to school all the time now - no more missing weeks at time for hospital stays and low counts. I told him that now he will just be a regular first grader. He got a big smile on his face and said, "That's cool, Mom, but you're not going to start crying are you?" I told him I would wait until he got out of the car. He has been tired after school, but has done so well. I have missed him the last two days, so I'm glad about the snow day today! Jake's limp has improved as we get away from the shots, and he feels great. His eyebrows and eyelashes continue to grow and it's amazing how much better he looks with those coming back. On Saturday night he lost a tooth - one on the top that had been hanging on for weeks because Jake won't touch them when they are loose - I guess he is tired of pain.

I do have to post on here to give our babysitter a bad time how Jake beat him two times in Game Cube Football! How sad, Brian, that at 15 you get schooled by a 6 year old in a video game! Hee hee! Thanks so much for coming over the other night, though! :~)

Since the roads were so bad yesterday, Steve came and picked me up for my OB apt. Got to love a doting husband. He and Brandon got to hear the heartbeat and Dr. Ryder even pulled out his cool portable ultrasound machine just to check on things as I felt a little big for 16 weeks. All was fine, though, and baby measured around 17 weeks - right where he/she needed to be. I think Brandon was a little dissappointed in the ultrasound picture, he was thinking color, 3D, the works! It was great seeing the little head, spine, feet and knees and fingers. I have the complete ultrasound next month - I can't believe we are coming up on month 5 already! This has been such a great pregnancy, so far. It's so much easier being pregnant with older kids than having a one year old to chase around and carry. I just read a great article about having a third child that described our feelings about this baby perfectly. The author described your first child representing the biggest change in your life and the struggles with that transition. "The second baby comes into a family that is still trying to find it's way. But by the third child, the famly is already there, rock-solid in it's formation, so it's not a starting over but rather a welcoming into the fold. Yes, we need to make a little room in our home for a third child, but that will come in the form of buying some baby equipment. For the most part, everything a baby needs is already here." Yes, we have a lot to buy as we had sold everything we had with the boys (we still have the crib, though!), but that part will be easy (and fun!). We are just so excited and overwhelmed with thoughts of, "Please, please let this baby be healthy!" So far so good, so we will try not to worry.

Plus, we have scans coming up next week that we can worry plenty about. The 18th can't come fast enough!

We would have been going in for chemo this Thursday - Wow - I can't believe how much I don't miss that! Right now I'd be scrambling to line stuff up for Brandon and trying to get the bag packed. I like getting Jake's backpack ready for school a lot better!

GO GIVE BLOOD!!!! Thanks for checking in on us!
Love, Kellie, Steve, Jake and Brandon :~)

Thursday, December 4, 2003 1:59 PM CST

Hey, Everyone! We went in for counts this morning and Jake's are up!!! Thank goodness! His WBC's are 14,000, hemaglobin up to 10.8 and his platelets came up to 100. His ANC was 12,600, so needless to say we can stop the shots. We still need to be so, so careful of all the flu and colds out there, so we will keep Jake home from school until Monday and go out on off hours to places to avoid a large crowd. Jake has not been to the mall since he started chemo hardly nor has he been to any indoor playplaces - don't know when I'll feel comfortable again letting him go to those kind of places. Maybe in the spring. Anyway, we got our schedule for scans and they will all be on the 18th. He will have his port hepranized that day, do blood counts and then go down for scans. He'll have a brain MRI, skull x-ray, CT scan of his chest and a bone scan. We will meet with Dr. Abromowitch after all that at 2 that day and hopefully have results for most of that then. We will go back on the 23rd for an EKG too, but other than that we are done until our monthly appointment in January. I cannot tell you how strange it feels not having a chemo coming up and being out of our normal chemo-shots-counts-chemo-shots-counts routine. It feels good, though, but will feel even better once we get the all clear from the scans on the 18th. Please say prayers for clear scans!!!!

Prayers too for some special friends of ours from the clinic that are nearing the end of their battle with cancer. Prayers for Stephanie and Daniel that they have no pain and only peace during this time. Prayers for their families for strength and support as they watch their children's lives come to an end this holiday season.

As we were unpacking the tree and all the ornaments here last night, I thought of how horrible it would be to be unpacking those little pictures of Jake and the ornaments he has made if he would not have made it this year. Sometimes it just hits me how blessed we are to have him hanging ornaments along side of us instead of mourning our first Christmas without him. I suppose as we get closer and closer to the year anniversary, this will happen more and more. I remember last year Jake having some headaches - maybe 2 in November before Thanksgiving. I remember talking to his teacher about it, and Steve being worried. I remember one night him saying, "What if he has a big old brain tumor in his head?" And me, the optomistic and clueless one saying, "Oh yeah, Steve, two headaches and it's a brain tumor. Do you know how little our chances are of him having a brain tumor?" Then all through December Jake never complained of another headaches again until right after Christmas. Wow - we were in such a different place then. This time last year we were getting ready to go to Florida for our annual Disney/visiting the old homestead trip to Orlando. It's so amazing for me to think that that tumor was there that whole time. Man, we had so many from up above looking out for us then.

So here we are a year later and instead of dying from a tumor that was silently killing him, Jake is done with treatment and entering a great year of healing and recovery. We are ever so thankful!

No big plans this weekend. More catching up here at the house, need to get some Christmas shopping done as I have hardly started! Good thing we are forgoing gifts from both families for the adults this year to chip away at the Oncology Clinic's wish list - much less to buy. Thanks to our families for honoring Jake with your gifts to the clinic!

Hope you all have a great weekend of loving up your kiddos and enjoying the time off. WE NEED SOME SNOW! That's what the boys are begging for at least, so I will wish for that! Thanks for checking in on us!
Love, Kellie, Steve, Jake and Brandon :~)

Monday, December 1, 2003 12:51 AM CST

Hey, Everyone! Well, we spent our first weekend done with treatment sick! Somehow Jake didn't get the sinus infection Brandon was fighting nor the influenza Steve had, which is good because his counts were low. Steve was so sick with fever, fatigue and cough that he didn't get out of bed until Sunday. Poor guy. It was a beautiful day yesterday(62 degrees), so we took advantage and did some work in the yard and put up a limited number of lights outside. Thought we'd go easy on the decorations this year with all that has been and will be going on in January when it's time for take down. The boys and I went over to my brother's for a quiet Thanksgiving with his girlfriend and her mom. Brandon's fever started that night, but after a couple of days of antibiodics, he is feeling much better now.

We went in for counts this morning and Jake's were a lot lower than anticipated. His ANC was only 590, hemaglobin was good at 10.6, but platelets were down to 66. So we will go back in for counts on Thursday and keep up with the shots and stay home from school until we do counts again then. I guess his bone marrow is finally showing wear with all the chemo as usually he doesn't drop below 1000 ANC on this round. He is feeling good, though, except for the limp he gets with being on the shots. Anisa (great oncology nurse) said she would schedule his scans and give us that on Thursday. We will be so glad to get those over with - it seems we can't quite celebrate until that part is over and there is confirmation that we are really done. Kind of a sad day in the clinic today. We saw a couple of teenagers that we know that are not doing too well and that's just really hard to see. Having cancer is such a battle and as happy as it can be when one child wins, it's all the more sad to see others that are not. We did get to see our friend Elizabeth and her dad from Kearney today and they are doing great! So that was a highlight!

My friend Liz (Josh's mom)and I are starting to work on our foundation called In the Arms of Friends. We are going to have programs to support families going through treatment at Children's and financially support the clinic and other programs like Camp CoHoLo. We are so excited about it and can't wait to get some time to put into it. All his scans were clear and he is officially in the "scan and hope" mode. Way to go Josh!

Not much else to report. I am doing fine - lots of nose stuffiness which I had with Jake too. I have my doctors appt. next week and my tummy just coninues to grow. Amazing how much bigger it gets so much sooner with every pregnancy. I'm sure toward the end I will look like I'm about 20 months pregnant - me and the elephants!

Thanks for checking on Jake! Don't forget to check out our new pics we posted on the photo page!
Make it a great day!
Love,
Kellie, Steve, Jake and Brandon :~)

Wednesday, November 26, 2003 2:25 PM CST

Friday, November 28th UPDATE - NEW PHOTOS ADDED!!! ENJOY!

Hello! Jake is doing great and is so happy to be home. Yesterday when we were leaving the hospital he seemed ready to go and no tears were shed. All his favorites were there to say goodbye and we took lots of pictures. As always, Jake's favorite nurse aide, Jackie, walked us down to the lobby to the car. He gave her a huge hug and jumped in the car. When we got home he was as happy as can be playing with his toys and being back in his room and taking a bath. No more tears about being done - I think he sees how nice it is to be home.

Jake was quite the entertainer this last hospital stay. One night he put on a whole concert of 4-5 songs singing and dancing to the "Holes" Soundtrack while standing on his bed with the spotlight on him (there is a light above the beds that is really bright for doing procedures). He watched himself in the big window of his room while doing his moves for me, Steve, Joe, Brooke and the nurses. He was giving out dedications and had a whole give-a-way for autographs, back-stage passes and even the shirt off his back. We took lots of pictures that he has begged me not to put on this website! He also had a "Magnet Business" going here and there in the linen closet of his room. He fixed broken metal, batteries and magnets. The linen closet has a door to the hallway and one inside the room, so he had me make a sign that said "closed" and "open" depending on if he was in the closet or not. The sweetest thing he did, though, was on Sunday. Our pastor came up to visit and she brought Jake a $5 bill. Right when she left, he was begging to go down to the giftshop. Steve took him down there and he loaded up with all the popcorn and candy $5 could buy him. Steve said when he got to the counter, he saw these little stretchy "diamond" rings. Steve said Jake asked him to put his popcorn back for him because he was going to buy one of those rings for mom instead! So he bought me the ring and then proceeded to show everyone what he bought on the way back up to the room. He was beaming and so delighted when I opened the little box and found the beutiful ring inside. It has been on my hand every since. Oh, the joy of having boys. They alway take care of their mommy!

Thanks so much to all those that watched Brandon, came and visited and sent balloons. Once again, we couldn't have done it without you!

So we are done. We are happy but also a little cautious about celebrating the whole thing as we know it may not be forever. Jake will have his end of treatment scans the week of Dec 15th and then we will scan every 3 months after that. We will also have monthly clinic appointments for blood count checks and to hepranize and flush Jake's port as they will keep that in for 6 months just in case of relapse.

To Jake, we salute you! I know you have no idea now what you have just accomplished, but someday you will. Just the whole miracle of your surgeries and that you made it through all of that. Sometimes I shudder just thinking about how little of a chance you had in getting that tumor out safely, but you made it! Then the 14 rounds of viscious chemo that you got through with very little nausea, not much fatigue, not one mouth sore, only a couple of transfusions and only two extra admissions for fever! Plus almost 6 weeks of that horrible radiation that burned your head and ear so severly - how much pain you must have been in that whole time and not once did you complain. You completed all of this with the most amazing blood counts that held steady or bounced back so quickly. You did that whole protocol of chemo and radiation with being only 10 days off your every three week schedule!!! Amazing! Unheard of they all say! 63 nights and over 180 days of visits or stays at the hospital this year! You have missed more than half of your schooling and still you stay at grade level or above! You are our hero, Jake! Someday you will realize what a battle this has been; and you will realize how unbelievable your recovery is and what a miracle it is that you are alive! As for us, we are so thankful for all of it. We are so proud to be your mom and dad and we love you!

We have no Thanksgiving plans which is just as well. We are tired, Steve has a bad cold and it's just so nice being home knowing that we won't have to pack up in three weeks and be gone again. Monday we go in for blood counts. Hope you all have a wonderful Thanksgiving!!!!!
Love, Steve, Kellie, Jake and Brandon :~)

Monday, November 24, 2003 9:54 PM CST

Well tonight is the last night. Jake goes from being distracted to crying about this being the last night and how much he is going to miss everyone. Last night he spent an hour crying about it and even begged me to let him have two more chemo treatments. Only a kid who takes it as well as him would ask for more chemo! We have had a great stay and Jake once again has felt not one ounce of nausea. Steve is coming down with a cold, so I have night duty again tonight. What a strange feeling we have right now. It kind of feels like moving to a new house and getting a new job at the same time. Like we have to start again and get used to the new life before us. I always leave the hospital saing goodbye to the nurses and that we will see them in three weeks. Tomorrow we will walk out and that won't be the case. I am elated, but sad at the same time. Sad for those that we will miss that have become our family here at this hospital the last year and sad for the kids that we know and don't know who will never get to this point. Of course scared too that this really won't be our last treatment, but very hopeful and faithful that it will. Most of all, grateful, joyous and happy that our little Jake will be able to grow, go to school, play with friends and be 6 again. We are happy for Brandon too as you can see the relief in his face that he will have his family home again with him when we talk about this being the end. He has been such a good boy through all of this. He has had so many love him like their own family to get him through. Some of the nurses made Jake a sign tonight that says, "60 days and 60 nights - The LAST night is finally here!" Thanks 6th floor for everything - we will miss you guys so much, but we really hope we never have to be back here again. Everyone - nurses, CCP's, child life, art therapist, receptionist, cleaning crew and dietary - thanks for making this year so much fun and for getting us through!

Happy Thanksgiving, Everyone, from one very thankful family!
Kellie, Steve, Jacob and Brandon ;~)

Friday, November 21, 2003 3:40 PM CST

Hey Everyone! We are on day 2 here at Children's. Jake is doing well and has his chemo done for the day. We did have some issues with his lines today during the chemo and ended up leaking some blood on the floor which freaked Jake out, but all is fine now. Jake's homebound teacher, Mrs. Sobczak was here today and it was good timing. Jake was sad from one antinausea drugs and the mood swings it brings, so she came in and curled up on the couch with him and read him a story. Then they worked for an hour or so and he was a happy boy after that. He is getting ready for some buddies to come up right now and share playroom time with him. No nausea and all else is well. We are almost halfway done with this last chemo! It seems so strange thinking this is our last one!

The awesome Amy Yarnell has organized a blood drive at Jake's school for Dec 16th in honor of Jake's year of battling cancer. She is such a great friend. She organized our benefit when Jake was first diagnosed and has been such a support this whole year, visiting with her daughter Morgan who was in Jake's class last year and constant e-mails and support. Pretty amazing since we hardly knew Amy before all this started! A true testiment to how great people can be. Anyway, she called today to offer to bring Brandon up here tomorrow when she visits and said that she already has close to 60 people that have turned in sign up sheets to donate!!! The American Red Cross thought we might have 50. Amy called them today to see if we could shoot for 100 and they said they would have to work on that. I'm so excited! Thanks Wheeler Elementary for all your wonderful support, and to Amy Yarnell and her family who have gone above and beyond for the Beresh's this year!

We will be here until Tuesday. Then we will keep Jake home from school on Wednesday and spend a quiet Thanksgiving at home or at my brother's. Thanks for checking on us and we will update soon!
Love, Kellie, Steve, Jake and Brandon :~)

Friday, November 14, 2003 2:01 PM CST

MONDAY, NOVEMBER 17TH - NEW PICS ADDED ON THE PHOTO PAGE. ENJOY!!!!!

Hey, Everyone! To say last night was magical would be a huge understatment! Last night was the Make A Wish Donor and Volunteer Appreciation Dinner at the Happy Hollow Country Club here in Omaha. We got there and found ourselves placed at table number one and sitting there was Seargent Epting and Corporal Brooks from the Army Recruiting office here in Omaha. Jake was so excited to meet them and he had no idea the surprise they had in store for him! We had dinner and then right after dinner the MC said that they had a special treat for everyone there that night because they were going to get to see something they don't usually get to see - a wish being granted to a child. Sgt. Epting and Corporal Brooks presented the boys with their army uniforms and then we went into the restrooms to change the boys into them. When they presented them in front of the crowd, the boys couldn't really see the uniforms as they were wrapped in plastic, but once we got the outifts into the light and out of the bags, the boys were ecstatic! Then when I showed them the flight suits and how "Beresh" was stiched on the uniforms, I thought they might bust. Jake could hardly get dressed he was so excited! They put on the full camo outfits - hat, boots and wallets included - and then we went out into the hallway for Corporal Brooks to introduce them to the crowd. When we got out there, Jake told Corporal Brooks and Sgt. Epting, "I am going to wear this everyday!" They gave the boys big flags to carry and orders that they were to carry their country's flag throug the crowd. Corporal Brooks said, "I want to introduce Jacob and Brandon Beresh - they left this room as civilians and now enter as soldiers!" The boys came marching in with the flags as proud as can be in their uniforms. There were probably 150 people there and everyone was standing and clapping as the boys marched through the isles with the Sgt. and Corporal! What a moment!

After that, it was my turn to speak and tell the crowd how important their work was with Make A Wish as Jake's wish was something that got us through the darkest days of this whole ordeal. When Jake was nauseated, worn down emotionally or physically or in pain, we would snuggle up in bed and talk about all the things we would do and see in Hawaii. It was a hard thing to talk about, but I got through it. The boys sat through the whole program, listening to how each donor had raised money and wishes they had granted. Every once in a while, Jake would hug his uniform and mouth to Sgt. Epting, "I love this thing."

Afterwards we took lots of pictures and doled out many hugs to everyone who had made the evening possible. Thanks so much to Make A Wish of Nebraska, Sgt. Epting and Corporal Brooks and Bertie and Pam, our Make A Wish Coordinators. You truely made last night one that the boys and us will hold in our hearts forever. I could have never imagined a moment more treasured than seeing the smiles on our boys' faces as they walked through the crowd. I look forward to all the smiles we will have on our trip to Hawaii!!!

It was late when we got home. Brandon had fallen asleep, but not Jake. He was so pumped about having a real army uniform and with all the evening's events. He told me as I was tucking him in bed, "You know what was my favorite part about tonight, Mom? Wearing that uniform and being a real soldier marching through the crowd holding the flag of the United States of America." I loved it too, Jake. It's something I will treasure forever.

Of course the boys had to go to school today with the uniforms on. I went up to Jake's school around 11 to give him medicine he forgot to take this morning. He asked if he could just come home - he was tired. I took him home and now he is trying to take a nap to get geared up for our buddy Josh's "Done with Chemo" party tonight. Jake has begged to go to the Children's Museun all year, but its one of the many places like the mall, inside playplaces, etc that we have just placed off limits with Jake's suppressed immune system. Tonight since the place is just reserved for Josh's party, he can go and he and Brandon are so excited to go help Josh celebrate!

Steve and I are planning to have a tailgate and go to the game tomorrow. Nebraska plays Kansas State and I'm sure the outcome won't be to our liking, so we'll just enjoy the company instead of the game!

Prayers for our friend Charlie as he won't be joining us tonight at Josh's party. He has low counts and a fever and is in the hospital. Get better soon, Charlie!!!

Looks like all is on tap for Jake to have his last chemo next week - November 20th through the 25th! Thanks for checking on us! Make it a great weekend!
Love, Steve, Kellie, Jake and Brandon :~)

We added new pics of Halloween on Thursday and will have new pics from last night posted soon.

Tuesday, November 11, 2003 9:02 AM CST

November 13th - 9:10 AM - THE PHOTO PAGE HAS BEEN UPDATED WITH NEW HALLOWEEN PICS. ENJOY! JAKE IS DOING WELL AND HAS BEEN GOING TO SCHOOL ALL DAY. WE ARE ALL EXCITED ABOUT THE BIG MAKE A WISH DONOR DINNER TONIGHT. I WILL UPDATE AFTER THAT TOMORROW.
MAKE IT A GREAT DAY! Love, Kellie :~)

Hey, Everyone! We had a fun weekend and Jake is doing great! His walking was the same story when he got up on Saturday - a struggle, but then Sat night we noticed he was walking with only a slight limp. "It feels better, Mom!" he said when we commented about it. It has been good since then. Still a limp and still needs reminders to keep his toes pointed towards the center when he walks, but so much better! We went for physical therapy yesterday and the therapist was impressed with his improvement. She said we didn't need to come back and just to keep up with the exercises as his feet should slowly start to improve now that he is done with the Vincristine (one of the chemos). It will take many, many months, but Jake should slowly regain the reflexes and muscle control he has lost this year. I haven't even felt one twinge of sadness watching him walk into school the last two days - he is so much better and feels great all the way around. I think his rough, slow going mornings have a lot to do with him not feeling well. It's hard for him to say, "I'm just sluggish and not myself today, Mom," so instead he is just grumpy. So nice to have a normal week and a half until the next chemo and then we will only see improvement from there. I'm so excited for Jake just to feel good all the time. We really have no idea how bad he has felt this whole year as he really doens't give the pain much of his time, but I'm sure it's been more "sluggish and just not himself days" than anything else.

We also got Jake's flu shot yesterday and we were all impressed with how well he took it. There was lots of screaming and crying, but he held still and my friend Liz commented that at least she didn't hear him out in the play room, which she has many times before. Early on her and I were talking about how her Josh takes needle pokes so well. I was telling her that even the finger pokes were torturous for Jake. One day she was out in the waiting room of the lab while Jake was in there and when we came out her eyes were big and filled with tears. I told her that he actually did pretty good that day and she couldn't believe it! How sweet of a friend is she to have tears for my boy and his pain? It's amazing how you get so wrapped up in all these kids and feel their pain and dissappointments and joy just as much as you do with your own. Thank goodness Jake takes the finger pokes in stride now. Maybe someday he will do the same with port pokes and IV's - my optimism is laughable at times! :~)

I went to the doctor myself yesterday and heard that awesome, fast thump, thump, thump of the baby's heartbeat. Much relief comes with hearing that. The doctor and I talked about banking this baby's cord blood and the options with that. Hopefully we wouldn't ever need it, but at least it would be there for Jake or any of the rest of us if we did.

We have some awesome things planned the last part of this week. On Thursday night is the Make a Wish Donor Appreciation Dinner. We have been invited to attend along with my dad and Lynne and Gary and Steve's brother Jeff. At the dinner we will be eating with Seargent Epting who has done a lot in making Jake's wish come true. Jake's wish for Make a Wish is go to Hawaii and board the USS Missouri, wearing an army uniform just his size. This Seargent Epting has gotten both boys camoflauge uniforms and flight suits and all the accessories to match. They sent the outfits over to the air force base in Bellevue (SAC) and they put all the authentic patches on each uniform! They are going to present the boys with the uniforms at the dinner as a complete surprise to them! I can't wait. I have told Jake I wasn't sure if they could get the uniforms or not so he can't act disappointed if he doesn't get a uniform before or during our trip to Hawaii. They have no idea that they are getting the whole army-issued kitten kaboodle on Thursday night! Steve and I are so excited to see their faces!

Jake is featured in the Omaha Magazine's Holiday Gift Guide this month. He was one of 12 Make A Wish kids to be photographed and their wish explained in the magazine. You'll have to check it out - it's a great picture of him. Our buddy Charlie is in the magazine too.

Then Friday night is our freind Josh's "Done With Chemo Party!" Jake is so excited for this! Liz and Jay are renting out the Children's Museum in Lincoln and it's ours for the night to play and help Josh celebrate being done with his year of chemo! I hate that any of us had to be in this situation, but having the Larson's to go through all of this with has been so great. We are ready to help them party! Josh's scans are this week, so please say prayers that everything comes out clean as a whistle! His link is at the bottom of this page.

We all went to the Millard North Mustang game last night - what a beautiful night it was! They won and look like they are well on their way to the state championship - Go Mustangs!!! The highlight for the boys of every Mustang game is getting to go on the field after the game and shake the coaches' hands - one time they even got to go into the locker room! Jake says it's because dad has this special "Old Players Pass". The whole thing is magical to the boys, so it's such a joy to take them.

Well that about covers it! Thanks for checking on Jake!
Love, Kellie, Steve, Jake and Brandon :~)

Friday, November 7, 2003 1:10 PM CST

Ok, I just updated yesterday, but had to come back today to share a story. I have been a crying mess the last couple of days. Pregnancy hormones, happiness and relief with the last chemo coming, frustration over seeing Jake struggle with his leg, the fear of losing our chemo protection when treatment ends or just having a lot of reflection as to all that has happened the last year - who knows - all of those things I'm sure. I woke up crying this morning, was crying later this morning, cried in the middle of Hobby Lobby and now I'm home and crying again - it's only 1 in the afternoon! For goodness sake, Woman, get it together!

Dropping Jake off in the morning in front of school is the hardest part of my day. I'm not walking right beside him like usual, so I guess it's like watching him as others see him. I drop him off and there is my sweet little bald boy, struggling to get out of the car and then wanting so bad to turn and run into school, but then there's his feet that won't do what he wants and that leg that just doesn't work. He's got the big backpack on as he hobbles into the building as the healthy kids whiz by him. Sometimes he sees someone he knows and he calls out their name, but the kids are ancy to get into school, so they keep running. I just sit there with the other cars inching up upon me, filled with other parents wondering why the gal in the Mountaineer won't get out of the way. I sit and watch him and say, "There goes my Jakieboy." It's brutal and I'm always driving away with tears or all out sobbing with Brandon in the back seat saying, "Oh, Mama, don't cry again."

Well, today Jake is so excited to go to school. He feels good, he got to stop his shots, school work is coming easier than ever for him and he's going to stay ALL DAY just like a regular first grader. He's on cloud nine as I drop him off. He struggles getting out of the car and starts his feeble little trek up to the front door. Kids running by, him searching for a familiar face and I know just wishing he could run too. Suddenly up bounds sunshine packed inside the cutest little first grade girl, Bailey Timmons. She and her family along with his other buddy Hannah, have been with Jake since the beginning of the whole, terrible ordeal. They were all in Kindergarten together and their mommies have made sure the girls have been up at the hospital visiting Jake this whole year. Bailey comes bounding up beside him with her huge smile and her step slows naturally to fit Jake's. He has a huge smile on his face too when he sees her, and a warmth falls over me. Today Jake has Bailey, who I know will never go faster than Jake can, to walk with him down to Mrs. Pratt's first grade class. I of course started to cry and just felt like that moment was such a good illustration of the friends, family and staff at the hospital that have gotten us through this year. No matter where we are or how fast or slow we are going, they were there. At the times when we needed to walk slow, needed someone to help us keep the pace, needed someone to carry us through the rough times, they have been there. Always knowing when and where and always without the expectation that we would be as sunshiny in return. I have been so overcome with emotion the last week because I have really had a chance to look back on this year and feel it's end coming. I am flooded with so many feelings of gratitude and amazement of the kindness, generosity, work and love people have given us to get us through this. All year we have been a family just trying to keep our head above water. But the whole way there have been so many throwing us a line or jumping in with us when it got too hard to swim alone. I can't believe it at times how much we have been blessed this year by so many people. I can never say thank you enough.

I have to tell you all too about Steve's Grandma Fern. Steve's dad, Gary, prints out every single one of these journals and gives them to Fern to read. She has taken them all and organized them by date. She keeps them in a notebook for me so I can have it always to keep. She will be 90 years old in December, has surgery coming up and has not been feeling too well. Thanks, Fern, for giving me a present I know someday will be my most cherished memory! You are the best and I love you!

Well, there is an update from yesterday too, so you can go back to that one if you missed it. I hope all of you have a great weekend and thanks so much for checking on Jake!
Love, Kellie, Steve, Jake and Brandon :~)

Thursday, November 6, 2003 5:03 PM CST

Hey, Everyone! Thanks for checking on Jakie. We went in for counts this morning and what fun we had up at the clinic. Jake's two buddies, Josh and Charlie were up there. Brandon came and Josh's brother Tanner too. So it was a wild boy time up there - making cookies and muffins and playing Nintendo. Plus, us mom's love spending time up there together too! Liz and Jenny, I couldn't ask to spend time with two cooler moms. That staff up there is so great - I can't even begin to explain how much of a home it is. Josh is done with treatment and Charlie is having his last chemo this week and in two week we will have ours. How great that we will all end around the same time - it will get really quiet up there without the Three Musketeers!

Jake's counts were very high. I'm sure that's part of the pain and soreness he's experiencing in his leg. His WBC's were 15,790, Platelets were 193, Hemaglobin 10.4 and a huge ANC of 14,000! That boy can make the neutrophils! So we can stop the shots and other than having physical therapy and getting his flu shot on Monday, we won't have to be back until the 20th when we go in for the last chemo. Jake's leg has shown some improvement - it's not sticking straigh out anymore and he does seem to have more strength in it. He can't lift up to his toes on that leg, so there is very little strength there to speak of. It will just take time. Being done with Vincristine and the Nuepogen shots will help in the next couple of weeks.

So, the diagnosis. During Jake's surgery, they did a frozen section of the tumor. It was extremely necrotic due to the embolization and things were so hectic and crazy in there with Jake bleeding so much, that the pathologist quickly told Dr. Hellbusch it looked like a PNET. They were thinking it was a brain tumor and being a nuerosurgeon and not having time to ask for clarification, he thought the pathologist meant a PNET brain tumor. He told us after surgery that he was not confident in that finding b/c it didn't appear to be a PNET brain tumor and so there was still hope that it indeed was benign. At this time we were on such a high from realizing and celebrating that Jake had even made it through surgery alive, we really weren't centered on the diagnosis. Surgery was Tuesday. Thursday night we were back on the regular med-surge floor and Dr. Hellbusch comes in and asks to speak to Steve and I. I knew from the look on his face that he had the diagnosis and it was not good. He explained that the pathologist had meant a PNET that was part of the Ewing's Sarcoma Family of tumors. It was indeed malignant and it was called Ewing's Sarcoma. That brain tumor turned out to be a malignant bone tumor. Dr. Hellbusch was so sad telling us and we were devastated. All the joy and celebration we felt from the success of surgery was punched out of our hearts. We went back to the room and told Gary and Joe and Brooke that it was malignant. We didn't know anything else. Jake had cancer. This is so hard to write because sometimes I still can't believe it to this day - Jake had cancer. That night our pediatrician, Fran Harrison came up. He knew that we needed to talk to him - he was the doctor at this point that we trusted the most - he was always there for us and his presence was such a comfort. It's funny b/c with Fran you can always tell what kind of news he's bringing - if it's bad, his hair is standing up on end from him running his fingers through it. Bad day, hair is up, good day, his hair is down. It was up that night. He told us it was "treatable" and it would be hard going through chemo, but it was "treatable". He said we didn't have to go anywhere else because we have good oncologists here and this was something they could handle. "Adria is the same here as it is in New York," he said. At the time it's funny b/c Steve and I had no idea what Adria was. Steve was thinking it was some woman and I'm thinking it's some new slang word. "What's Adria?" we asked. "A type of chemo," he said. At least it provided a good laugh. We were clueless. The big question Dr. Harrison said was if the cancer has metasticized (spread to other places). We were scheduled for a CT scan of his lungs in the morning (lungs are the favorite place for Ewing's to spread) and then the next week would be followed by further tests. I don't even know what to tell you about how we were feeling. So sad, so devastated, so in disbelief. Our son has cancer? What happened to the benign brain tumor? We had to grieve our loss of our thought that we could just get the thing out and move on. We weren't moving on, we were moving to a different life.

No sleep that night. Steve stayed at the hospital crying, worrying, dying inside. I was at home with Brandon doing the same and scouring the interenet on information on Ewing's Sarcoma. The next day was Jake's CT scan. Dr. Harrison was first on the scene with the results and his hair looked good. We knew the results were clear before he even said a word. Thank God. We met with Dr. Abromowitch and Anisa that day. It's funny because I think about talking to them that day and having no idea how important and special these people would become to us. Dr. Abromowitch gave us hope. Her and Anisa explained everything and put it with hope. Jake's tumor being weird did not mean anything to them. It was Ewing's Sarcoma, there was a protocol, we would follow it and things would probably be ok. We just had to wait and see. I never have then and have never since felt rushed or intimidated with the oncology staff. They alway have time. Now we just had to get through a bone marrow test, spinal MRI and bone scan. The survival rate of Ewing's is decent (75r really bad depending on the presence of metastisis. We took Jake home on Saturday. He was amazingly the same boy he was when we drove to Iowa on his 6th birthday. A little less balanced, but had lost nothing neurologically in the whole process. Thank God! We were so lucky to have found that tumor and to have gotten it out before it burst and took him away. Dr. Abromowitch thought we were just days from that happening! I think that was the thing that got us through the next couple of weeks.

With cancer, there is the diagnosis that you have to grieve over and what the disease can do and then there is the grief over the treatment and how your life will change. During Jake's bone marrow aspiration and port placement surgery, Dr. Abromowitch came and talked to us and told us that our protocol with Localized Ewing's involved 14 rounds of chemo. They would be every three weeks and would be 3 to 6 days in lenghth - all inpatient stays. He would have radiation at around the 4th or 5th chemo, but she was unsure of the duration of that. Steve and I felt like a ton of bricks had fallen on us. Every three weeks an inpatient stay of 3 or 6 days? What about our life? What about Brandon? How could we do this? It was very hard to hear. They told us about a clnical trial that we could join that was studying doing the treatment every 2 weeks versus every 3. We joined the study and went home devasted - grieving again - grieving for life as we knew it.

That afternoon a distant relative of mine called. I had never met her, but her son had been in treatment for Luekemia for the past two years. I told her that I didn't know how we were going to do this treatment regimen. "Can we do this," I asked her. "You can do this and you will," she responded. I think her phone call came straight from up above - it was just what I needed to hear.

So we did and here we are. I will write more on the days following in upcoming journals. I've got a jewelry show to do tonight and I better get going! Thanks for checking on us! Love, Kellie, Steve, Jake and Brandon :~)

Monday, November 3, 2003 3:06 PM CST

Hey, Everyone! Rainy, cold day here! Jake and Brandon had a great Halloween. The home health nurse came and unhooked his port needle and we went to his Halloween party at school that afternoon. He did pretty well, although his limping really slowed him down. At one point, I saw him go over to the corner of the room and sit down. I went and asked if he was ok and he said, "I can't do this all day, Mom. Can we go home?" I told him there was 10 more minutes left of school and he decided to stay and finish out the party. He came home and crashed on the couch for a couple of hours, getting in some quality Liberty Kids and Cyberchase time. Then when the excitement of Halloween fell over the house as the sun went down, Jake was back up and ready for trick-or-treating. We bundled them up and Steve and the boy's godfather, Joe, took them around the neighborhood in the wagon. They had a great time. I had a great time at home with Brooke scarring kids with the fog machine that I made fun of Steve for getting! It was a good night.

The rest of the weekend was good too, although Jake's limping did not improve. By Sunday he was really getting frustrated with the whole thing. Poor kid just wants to be able to run and play and not have to drag around a bum foot that he can't get to do what he wants it to. It bums Steve and I out too to see him struggling so. So this morning, we called the oncology clinic to ask Anisa and Dr. A if we couldn't get into physical therapy to help Jake out. They got us in this afternoon up at Children's. Although Jake is tired and sore from his session, she was able to stretch him out and train him how his foot must point forward to walk (he had it pointing outward as it was set in the cast that way). The therapist said he has a lot of weakness in that leg and his foot drop has really tightened the muscles in the back of his legs, making walking in both legs difficult along with trying to correct his foot posture in the other leg. We will go back next week and she sent us home with exercises to do until then. Of course, we couldn't go to Children's without a stop up to the Oncology Clinic to say hi.

Jake continues with the shots and then we will see what his counts are on Thursday to see if we can stop them at that time. We need to do his flu shot sometime next week (oh I dread that!) Brandon is getting his on Wednesday. So we are on tap for our LAST CHEMO November 20-25th. I can't hardly believe it when I hear myself telling people that. It's like the words are coming out, but each time I say it, it's like it's the first time I've heard it. Wow, so many emotions with coming to the end of treatment. Hard to explain. Steve and I have had many tears this week mixed with pure elation that we have finally made it to the month of November. This month seemed so incredibly far away before. I will have to make sure I write about the day we got Jake's diagnosis and the week following next time I write, so I have that recorded in this journal. Hopefully things will be uneventful between now and then, so that is all I will have to write about! Will put up pics of the boys at Halloween soon! Thanks for checking on us!
Love, Kellie, Steve, Jake and Brandon :~)

Wednesday, October 29, 2003 7:50 PM CST

UPDATE, FRIDAY, OCTOBER 31ST-7 AM
We have NEW pictures up on the photo page!!! Thanks, Uncle Jeff! Jake did his chemo #13 in the clinic yesterday and we got home around 6 pm. I had a meeting last night, so Steve was in charge of the portable IV machine and setting up the meds on the pump. He did a great job. We were up every couple hours with Jake having to go to the bathroom b/c of his hydration, but it was a good night. Much easier doing it at home than at the hospital! The home health nurse is coming at 10 this morning to unhook him from the IV and then hopefully he will feel good enough to go to his Halloween party this afternoon at school. I'm sure he will. We are all looking forward to trick or treating tonight. Have a Happy Halloween and a great weekend! Love, Kellie

You can purchase a gold ribbon that will be put on the Childhood Cancer National Tree in honor or memory of a special child who has or has had cancer by going to www.candlelighters.org. The gold ribbons will be put on a 25 foot tree that is displayed in Washington D.C. to raise awareness of childhood cancer. If you would like to honor Jake or another child, you can purchase a ribbon on-line for just $5.00 in their name. Thanks!

Well, Jake came home with that cast in his hands!!!! Yes! After two full days of being at school, the poor cast met its limit. Last night Jake couldn't walk on it because he'd worn a hole in the bottom and it was poking him in the foot. So he missed school entirely today. His apt. was at 2:15 this afternoon. They cut the cast off, sent us down for an x-ray and then we came back up to meet with Dr. Ginsberg. He said all looked well and Jake could start walking on it, but we have to be careful with it for a couple of weeks. Perfect timing for chemo - he will be hooked up to an IV pole and an IV backpack, so that will limit his activity for the next two days. Funny it takes a needle in his chest to do that! Even if he wouldn't have gotten if off today, I don't think he would have been upset. "If I don't get to get it off, at least I get to get a new cast and this time I'm getting GREEN!" Love that kid's attitude - that's my boy! He is limping of course, but getting around pretty well. Brandon seems soooo happy to have Jake's cast off - he has his bath buddy back and now he won't have to hear, "My brother broke it" with people asking Jake how he broke his leg. Jake did LOVE taking a bath tonight! We are a very happy bunch here!

We go in tomorrow for chemo #13!!!! We will be in the clinic all day getting chemo, hydration and meds and then go home around 4 or 5 with an IV backpack. Jake's home-based teacher, Mrs. Sobczak, will come up and work with Jake in the clinic in the afternoon. He will be unhooked in time for his Halloween party at school on Friday. Needless to say the boys are sooooo excited for Halloween! Jake is going to be an army guy and Brandon is going to be a pirate. It will be COLD (40's) but no rain, so we will take it! Hope everyone has a very Happy Halloween!!! Give blood, give money and give hugs! We'll put some new pics up in the next couple of days.
Love, Kellie, Steve, Jake, Brandon and Baby :~)

Tuesday, October 28, 2003 1:49 PM CST

Hey, Everyone! Just had to do a quick update because Jake has gone the last two days of school ALL DAY! He's not as limpy from the chemo/neupogen shots, so he decided to go all day yesterday. I picked him up at 3:30 and he was all smiles! I'm so proud of him with all the crap he's been through and that stupid cast going to school all day! It's been chilly here the last couple of days so Jake has been wearing a stocking cap to school. With that cap on, I look at him and think he looks just like he did before all this started. It's been such a joy the last two days to see his sweet fresh face as we drive to school in the morning and then having him stay at school all day! Simple things are such joys. I look so forward to soon having him go everyday, all day and have it be his normal routine and not something I write about in his journal.

I will update again tomorrow after our appointment with the orthopedic doc in the afternoon. Hopefully he will be riding home with his cast in his hands instead of on his leg! Please make sure you check in on the kiddos below and write a note in their guestbook. We love to get notes in our guestbook from all over from people we don't know. It's such a powerful feeling knowing so many are praying for your child! Spread that to our special friends below! To visit another friend, Cameron from Remsen, Iowa, go to www.thestatus.com. Last name "Miller", password, "hawks1". Cameron is at home right now and doing well. He got a new central line last week and hopefully will not be coming back to Omaha until his next chemo!!! Thanks! Love, Kellie :~)

Sunday, October 26, 2003 8:13 AM CST

Good Morning! It's Sunday morning and all is well here. The boys had a good night and Jake is feeling great! We have been working around the house this weekend, getting the yard ready for winter and trying to clean up inside. The organizational mess grows as the days tick away towards the end of treatment. Hopefully we will be able to catch up on all the neglect this house has felt this past year. The house may look fine to the naked eye, but don't dare open a closet or cupboard - you would be taking a major risk of being crushed by falling debris!

Jake has only a couple days left of his cast. I hope that we will indeed be able to get it off on Wednesday. If not, I'm sure they will have to make him a new cast. He was playing outside yesterday and it was covered in dirt when Jake came inside. He's a boy and he can't get enough of dirt. Plus him and Brandon love the movie "Holes" and they love to go pretend they are "Caveman" and "Zero" out there digging holes in the dirt patch we've made for them in the backyard.

Speaking of holes, sometimes I wish we could dig one ourselves. Just lately, when we are in stores or restaurants, the stares we constantly get are wearing on Steve and I. Maybe it's because we are nearing the end of treatment and a normal routine almost seems tangible at this point. I usually consider Jake's bald head our badge of honor. People see us and know we are going through a hard time; they know that my boy is brave and strong and they feel some of our pain. At times, though, I just want him to be a normal kid walking around Target, beggin to go look at the toys. We've grown tired of him being the cancer kid and want so much for him just to be Jake the first grader. More than anything I think it's a sign that we just want to be done. I really look forward to when his hair grows back and we have figured out a somewhat normal looking hairdo for him and the permanent hair loss he will have from radiation. Then we can walk through Applebees and not feel the double takes of people as we walk by. It has never really bothered us until now. Like I said we just want to be done - for Jake mostly. I do have a new appreciation and sympathy for all the people who have to deal with the stares of others all the time.

Jake just informed me that we need to get down to this particular car dealership "because, Mom, if you buy just one of their cars, you get a big screen TV and $5000 dollars back! We could really use a big screen TV, Mom, and all you have to do is buy a car to get it!" What a deal - I better go get my shoes on!

Hey, something great for you to do this week - go give blood! Jake has been extremely lucky needing only 3 blood transfusions and one platelet transfusion through all of this. A lot of cancer patients need blood on a weekly basis and that's where a majority of the blood donated goes to. If you ever wonder, "how can I help?" when you hear of a family or friend having cancer, this is the perfect way. You giving blood on a regular basis makes cancer treatment possible!

What's next for us? Jake goes in Wednesday afternoon to the orthopedic doc and hopefully gets his cast off. Then Thursday we go in for chemo #13. We will spend the day in the clinic getting our chemo and meds and then go home late afternoon with an IV backpack. He will get fluids AT HOME through the night and then the home health nurse will come unhook him that morning. Then that afternoon he will go to school for his Halloween party and then trick or treating that night. So glad he's not going to miss Halloween!

Thanks for checking on us and make it a great week!
Love, Kellie, Steve, Jake and Brandon :~)

Wednesday, October 22, 2003 2:41 PM CDT

Hey, Everyone - thanks for coming by and checking on Jake! He has had a good couple of days. We went to his conference at school last night and his teacher says he is doing great! Right where he needs to be with reading and ahead of things in math. She says he gets along with everyone and is a leader. I was so happy things looked good for him with his school work. One less thing to worry about if he isn't having to catch up once we are done. His report card said he has been there 24 days (a lot of those half days) and has been absent 20! So for being there about half the time, we were so proud and pleased to hear he is doing so well.

Today he was sluggish getting to school. He had planned to stay for lunch as they were having his favorite - Little Smokies! Well, when he got there, he found out it was hamburgers. He was so upset and never seemed to get it together after that. They offered to make him another lunch there at school, but he got so sad and then said he didn't feel good. His hemaglobin had been low on Monday, so when he called me I thought he might need a transfusion and that's why he was so downhearted about lunch. So I went and picked him up this morning and headed for the clinic. The closer we got to the hospital, the more his spirit brightened. He was happy as a lark once we were up in the clinic, playing Clue Jr. with a teenage girl that was recently diagnosed. His dreamworld - gettting attention from a teenager! His counts came back and his hemaglobin has risen to 9.2 (8.9 on Monday), his platelets were up to 135 and white blood cells up to 7.88. So we can stop the shots, he doesn't need a transfusion and we don't have to go back to clinic until he goes for his outpt. chemo on the 30th! Looks like instead of a transfusion, he just needed a little infusion of love and understanding from the clinic and the staff and fellow patients there. It's a comfort to him being there as being the only "cancer kid" in the whole school sometimes just wears him out. He told me on the way home, "I just need a break, Mom, and then on Monday I will go to school and be happy. I promise." He has tomorrow and Friday off because of conferences so it will be a nice break for him. I was relieved to see all his counts rise and that we didn't have to stay there all day getting a transfusion. Brandon was glad to see us pick him up from Kindermusic too.

For some reason it's sunny and 82 here today - this better stop or people are going to start wintering here in Nebraska - Ha!

No real plans for the weekend. We are forgoing the game on Saturday against Iowa State to spend a quiet weekend at HOME! I am feeling good - many cravings for lemon cake, yogurt and Dairy Queen Blizzards. Between Jake's cravings from chemo and mine from pregnancy, poor Steve must be going crazy.

Oh, one last thing. We got a call from one of our Make A Wish coordinators and we have the dates for our trip to Hawaii - 10 days! Let's just say we are excited and it's building by the day! Oh, too, my cousin from Texas, Kenna, is going to be on "Extreme Makeover" at 8 p.m. on ABC Thursday night. Her sister Diana is the one that has helped us so much this year. Watch it. It should be good. Well, we will update more later! Make it a great weekend and love up your kiddos!
Love, Kellie, Steve, Jake and Brandon :~)

Monday, October 20, 2003 2:00 PM CDT

Hey, Everyone! We had a good weekend. No trips to the hospital, no broken bones - I call that a good weekend! Jake only has 9 more days with his cast - please Dear Lord, let it be healed like a "normal" bone would be and please let Jake's cast last that long. He's developed a little soft spot where it's wearing through on the bottome, so hopefully it will make it another 9 days.

Jake is feeling great and we went in for counts this morning. His ANC=1470 and is now on the rise. Hemaglobin was down a bit to 8.9, so hopefully it will come up for us to avoid a transfusion. His platelets were 105,000. So we will go back on Wednesday to see if we can stop the shots for this round. He will go to school tomorrow for at least a half day. He is starting to limp from the Nuepogen shots, so walking around in the cast has been tougher the last couple of days. He and his clinic buddy, Charlie (5), gave each other nicknames today based on Jake's port and Charlie's central line. Charlie was "Central Line Man" and Jake was "Port Face"! Amazing what these kids find as so common and funny. Another Jake funny was last night when we were laying in bed together, he says he wants to make a picture for one of his classmates. I told him when we went to clinic in the morning, he could draw a picture then. He says, "Mom, Jake Beresh doesn't draw, he creates!" Oh brother!

We have some other news here in the Beresh household - I'm pregnant! (Hence the background on today's page) I'll give you some time to get your mouth off the floor....ok, ready? Our due date is May 23rd. A year ago, if you would have asked Steve or I if we were having another baby, we would have said, "no". But major changes bring on a change of minds. Really we decided to have another baby on January 8th, the day we found Jake's tumor. Steve and I were in the bathroom of Jake's hospital room until about 3 in the morning that night, crying and trying to make sense out what was happening. We said that night we should have another baby and the feeling never waned the whole year. So here we are. The boys are so excited and talk constantly about where the baby will sleep, how big it is, how big Mommy's tummy will get, etc... There is discussion going on between them as to whose bed the baby will sleep in once it starts crying at night. Ha - we know that answer-MOM'S. It's exciting having kids that are old enough to know what's going on and are excited for what's to come. Hopefully it will last once Baby is here! I have been feeling good - occasional nausea, but nothing major. Someone asked me if I was tired and to tell you the truth, I have been tired since January 8th, so I haven't really noticed any difference. No, we are not going to find out what it is. Steve is adamantly against knowing and I love the surprise at the end too, so we will wait.

We have a new link at the bottom of the page. This little boy is going in for surgery this week up at Mayo's for a tumor they just found in his brain. This family is cousin's of a dear friend of mine, Rebecca Ferley, that now lives in Virginia. Brant is 4 and he and his family are from Des Moines. Please visit their site and sign their guestbook. Visiting with Mom via e-mail this past week has brought forward a lot of memories for me of when we first found Jake's tumor and how dark those days were. Prayers for Brant, his mom Julie, dad Craig and brother Bradley. Our friend Cameron did have to come into Omaha for a Central Line infection. He is feeling good, though, and has not had a fever. They had to remove his line and they can go home as soon as they can reinsert another one. Hopefully that's today. You can visit them and write them a note about how much you love the Huskers or something along those lines (they are big Hawkeye fans) at www.thestatus.com. Last name "Miller", Password "hawks1".

Make it a great day! Don't count the days...Make the days counts and of course, GO GIVE BLOOD!
Love, Kellie, Steve, Jake and Brandon :~)

Friday, October 17, 2003 12:40 AM CDT

Wow! We have hit 25,000 on the counter!!!!! Jake was so excited! Thank to all of you that visit!!! We appreciate it so much!

Hey, Everyone! A beautiful fall day here in Omaha! We took Jake in for counts this morning and all are well. I don't know if he is on the way down or up, but it looks like his counts won't dip this time either way. His ANC was 4750, hg=9.1, platelets=181. Hopefully his hemoglobin will come up over the weekend. We will go back in for counts on Monday. Thanks to Anisa and Dr. Abromowitch, we found out today that we won't have to spend the night for our next chemo!!!! It was supposed to be an overnight stay, but Steve asked them if we could swing it without having to spend the night (if there is an angle to work, Steve is there!). So they said today that we could come into the clinic that day (Oct. 30th) and do our chemo there and then leave in the afternoon with an IV backpack for hydration overnight and a home health nurse will come the next day and take out his needle. We are so excited not to have to spend that night in the hospital - every night not there is a good thing! Then it's just one more 6 day stay starting November 20th and then we are done!

Jake woke up with blood all over his pillow and on his head yesterday. Seems his little finger has spent too much time in his nose and he irritated something. Steve and I were thinking the next day how lucky we were because if that had happened during a time of low platelets, he could have bled and bled and we wouldn't have known it. What a scarry thought. We checked on him more than a couple times last night just to make sure his nose wasn't bleeding. He was fine.

Millard has the day off of school today, so we are going to spend the afternoon doing carmel apples and decorating pumpkins at the Juma's house this afternoon. We'll see where Jake's counts are on Monday and then he will probably go to school the rest of the week. Only two more weeks left of the cast!!!!

Our friend Josh Larson got in for his last chemo!!!! Way to go, Josh! He has done such an amazing job getting through 10 rounds of chemo without one fever admission or transfusion!!! We are so happy you guys are DONE! Congratulations to the Larson family!!! Little Cameron has very low counts and a fever, so keep up the prayers that he won't be making the trip to Omaha any sooner than for chemo. Josh's link is at the bottom of this page and Cameron is at www.thestatus.com Last name "Miller" password "hawks1".

Make it a great weekend and we'll update on Monday!
Love, Kellie, Steve, Jake and Brandon :~)

Tuesday, October 14, 2003 10:30 PM CDT

Hey, All! We are home! We got home early this morning at 9:30! Jake is feeling great. We are doing a little Zofran here the first 24 hours just to hedge off any nausea that may want to peek through, but no sign of any yet. What a beautiful day it was here in Omaha - sunny and 75! And how great it was all of us being home. We have 6 more nights left in the hospital - barring any unforseen admissions. It will be a total of 65 nights in the hospital this year! Wow - I can hardly believe we have done this! I can hardly believe any of this has happened.

Jake had some great friends visit this time around. Bailey and Hanna came up Thursday night. Friday Mitchell Krohn and Justin and Brianna Juma came up to help Jake spend his playroom time. Then Monday night, Morgan Yarnell and Connor Eckborg came to bring Brandon and Jake and the rest of us a great meal!!! Thank you guys so much. Of course all the other visitors that come up on a regular basis to keep Mom and Dad sane - we are so, so appreciative!!! Thanks to Joe, Kathy and Grandpa in helping watch Brandon too!!! Brandon did well this time around and didn't seem to get so sad, so we are thankful for that. Thanks too to the oncology clinic staff and 6th floor staff for making it another great stay - Children's Hospital is the BEST!

Jake will go to school tomorrow and Thursday and then go in for counts on Friday morning. The cast has become a non-entity to him basically. He runs on it now and never mentions it hurting or bothering him. Only 2 more weeks to go with that. Thanks for checking on us and we will update on Friday. Go give blood this week and make it a great one! Love, Kellie :~)

ps. Prayers for our friend Josh who is trying to get his counts high enough for his LAST chemo - whoohoooo!!! And prayers for Cameron as he has no white blood cells right now and we don't want him having to make a trip into Omaha with fever. Josh's link is at the bottom of the page and you can check on Cameron at www.thestatus.com Last name "Miller" and Password "hawks1" Thanks!!!

Monday, October 13, 2003 6:01 PM CDT

Hey, Everyone! New pictures added to the photo page, so check them out. We are doing good. Jake is done with chemo and will just get hydration for the night. No nausea and his counts were good today, so we are good to go for a discharge in the morning! Yeah! We are ready to get home!!!

Enjoy the new pictures and have a great day! Love, Kellie

Friday, October 10, 2003 11:32 AM CDT

Hey! We are here in room 608. We got to a room yesterday around 4 and Jake got chemo around 7 last night. He is getting chemo right now for the day (2 hours of the day are chemo and the rest is hydration, tummy meds and meds to protect his bladder). This is round #12 of 14 with Ifosfomide and Etoposide. So far he is feeling good and he had a good night last night. Brandon and I went to Candlelighters last night here at the hospital while Jake entertained his friends Bailey and Hanna in the playroom. They had a great time playing Monopoly. Bailey also brought baseball cards from the Greenville (SC) Braves that had sent him a signed batting helmet earlier this summer. He loves having faces to go with all the signatures!

Jake went to school this week for half days. He is doing well on his cast, but starts to fatigue after a morning at school. Wednesday he got to decorate his principal's hair with 3 other kids who were the top fundraisers for school. I have never seen so much hair coloring spray being put on one person - it was running down poor Mr. DeFreece's neck! Then his class had their pizza party at lunchtime. When I picked him up from school after the pizza party, his whole class gave him hugs and high-fives, saying they were going to miss him and they couldn't wait to see him next week. It was so sweet. They all filed past him with their well wishes. What a great supportive class and school!

We will do our time here for the next 5 days and get out in the morning on Tuesday.

Hope you all have a great weekend. Looking out over Omaha with this incredible view from the 6th floor up here at Children's, the fall colors are beautiful! We are working on having new pics up this weekend, so check back again for those! Thanks for coming by and checking on Jake! Love, Kellie :~)

Sunday, October 5, 2003 12:01 AM CDT

Hey, Everyone! Jake is doing great and is even walking on his cast now!!! Yeah - Steve and I are saved from traction. Long distances are a challenge, but not when you have the best Godfather in the world - Joe Hartnett there to carry Jake all over at the Husker game!!! Thanks, Joe!

We did the carnival Friday night at Jake's school which was so much fun. As you can see, Jake got his arm and his head painted! The gal was just dying to paint his head and he finally let her after she said she would do a Husker thing.

Yesterday was the Husker game and our tailgate. The boys had a blast! It was a nice warm day (80) and the Huskers won - what more could you ask for? We have new pics on the photo page too of the Husker game.

Will have Jake try to go to school on Monday for a half day. We'll see how he does with the cast. Looks like he will be sitting out of gym and recess for a while. We go in for chemo #12 on Thursday and will be there until Tuesday of the next week. This is the Ifosfomide and Etoposide round for you in-the-know-of-chemo people out there.

Since I don't have much to write, I thought I would thank all of you for following Jake's story and keeping up with us. Thanks too to all the people that have done so much for us this past year. When I look back on it, I am so surprised by the kindness of so many people - strangers and mere aquaintances who have helped us so much and become such great friends in the process. So many of you have gone above and beyond and we barely knew each other before Jake and cancer went together in the same sentence. Of course there is always dissappointment in friends you thought would be there but weren't, but overall we have been so blessed with the kindness and generosity of so many of our friends and family!!! I hope as we near the end of all of this, I can really start to thank many of you individually and properly. Sometimes I don't know if we would have eaten if not for the food that was brought to us. Sometimes I don't know if we would have been able to speak if not for the phone call to check on us and see how we were doing. Sometimes I don't know if we would have kept our sanity if not for the visitors that have come up to the hospital to give us a break. Sometimes I don't know if we would have hoped if not for the wonderful cards, notes, e-mails, guestbook entries, hugs and support that we have gotten from you. Thank you, thank you for that friendship and support!!!! It has held us up like a stiff, consistent breeze against the wave of pain and uncertainty we have faced this year. For those of you that follow Jake's site diligently, many of you we don't know or hardly so, thank you so, so much. Jake follows that counter on the bottom of this page - loving it when it hits a new big mark (25,000 is fast approaching). Steve and I follow it too and it warms our heart to see the number jump by hundreds on some days. You can never know how much it means that you would take the time during the day to read our site just to check on our little boy. We know well wishes and prayers go with each visit to the site and it makes all the difference in the world! Quoting one of my least favorite people, Hillary Clinton, "It takes a village" to get through something like this and our village is the best around by miles!!! Have a great day!!
Love, Steve, Kellie, Jake and Brandon :~)

Thursday, October 2, 2003 1:42 PM CDT

NEW PICTURES ON THE PHOTO PAGE - CHECK THEM OUT!!!!

O.k., how funny would it be if a little 6 year old boy that has been through two harrowing surgeries, 11 rounds of chemo and 6 weeks of skin burning radiation broke his leg with only 2 more months of treatment to go? Wouldn't that be funny? Well we are laughing over here, because that's what happened - JAKE BROKE HIS LEG!

Yesterday Jake is feeling great and a couple of friends are over and he and Brandon and them go out in the backyard to play a little touch football. About 2 seconds after I came inside with explicit instructions to Brandon about the no tackling rule, I hear Jake scream. This was one of those "hurry up and get out there b/c something really bad just happened" screams. As I am running down the stairs of the deck, I am thinking that he has a terrible head injury, maybe he's convulsing, his head is dented in - you name it, I was thinking it. I was so relieved when I came upon Jake screaming and crying and holding his LEG! There was never any swelling or bruising and it didn't hurt to the touch, but he couldn't walk on it. We called the oncologist on call and he said to take him to the Children's Urgent Care. Steve and Jake went and sure enough, there was a tiny hairline fracture in the middle of his shin. There was some discussion between the orthapedist and the oncologist about maybe it being a symptom of Ewing's tumor in that bone and maybe just temporarily splinting it until he could see our oncologist today, but then they decided there was no evidence of it being a pathological fracture, so they went ahead and casted it. He picked RED of course for the HUSKERS. It's supposed to be a walking cast, but Jake has yet to try that feature out, so we have been carrying him. What fun!

We went into Children's today for counts and to see the radiologist's report and talk to Dr. Abromowitch about it. The radiology report says nothing unusual about the break and Dr. A didn't seemed too concerned about it. She is going to talk to the radiologist about it. Jake's counts were very good. WBC'S 20,000! Hgb=11.3, and platelets=94. So no more shots. Once we were done in the clinic, Jake wanted to get up to the 6th floor to show all the nurses up there his cast. They all signed it while we were there.

So now it doesn't look like Jake will be going to school the rest of the week. We'll be having our great Mrs. Sobczek over for Millard Public School at the kitchen table. Hopefully by Monday he can walk on it a little and go to school for a while. It may be doubtful. He says it hurts too much to walk on it now. We have a busy weekend planned as it is our high count weekend before chemo. We hit Valentinos for lunch today, so we got the first priority done. Then tonight we are going downtown to the Old Market for a photo shoot for Make A Wish. I guess the Omaha Magazine is doing an article on 12 Make A Wish kids and we are all meeting down there tonight for pictures. Oh the pain of living within a house of men sometimes....after the photo shoot, they are treating all the families to dinner and horse-drawn carriage rides through the Old Market - doesn't that sound great? NO! - going to the Millard North High School football game sounds much better, Mom! So I guess we will be heading to that tonight after the photo thing. Then tomorrow night is his school's carnival. Saturday brings the Nebraska game that we are taking the boys to. Jake wants a tailgate too with the tent, turf and all, so we will be doing that before the game. It will be a cool one - we will be bringing the heater too. The boys are so excited for the game - they have been begging to go and keep asking, is this the game we can go to? We are also taking my 90 year old grandma to the game, so it should be a lot of fun!

Well, I need to go tend to the gimp and his brother! Hope you all make it a great weekend! Go give blood and love up your kiddos!!!!
Love, Kellie, Steve, Jake and Brandon :~)

UPDATE - THURSDAY NIGHT - 10:15 p.m.
We got to go on the carriage ride! The boys lamented and decided we could sneak it in before heading to the game. We saw Anisa (our great oncology nurse) at the Mustang game and she said Dr. Abromowitch talked to the radiologist and he said it's a normal break in the normal bone of a 6 year old boy - nothing suspicious!!!! Will be two parents here on Washington Street sleeping easier tonight and it's going to be a great weekend - even if we are in traction by the end of it from carrying our 6 year old everywhere! Ha!

Monday, September 29, 2003 7:07 PM CDT

We are home! We got home late this afternoon. Jake is feeling much better. Still has the cold with the snot and the coughing, but he is eating and has a normal activity again. Will do a couple more breathing treatments and then should have the cough wiped out. We will go in on Thursday for counts and will be keeping him home from school until then to give his body time to recover from the cold and get those counts up higher. Thanks to Jennifer and Ryan Novacek who brought over dinner tonight - so sweet of you guys! We are all good - just so, so tired (at least Steve and I) and so, so glad to be home! If you have to be stuck in a hospital all the time, Children's Hospital is pretty good digs with pretty awesome people to be stuck with! Thanks to the Grandpas for helping with Brandon and for the calls, e-mails and guestbook messages from everyone! Got a little sad today, driving past a school when I was on my way to the hospital after having picked up Brandon from preschool. All the kids out there on the playground while my little boy has to be dealing with needles, hospitals and IV's instead of out there playing with his buddies. Not much longer now, though! Make it a great day!
Love, Kellie, Steve, Jake and Brandon :~)

Monday, September 29, 2003 12:12 AM CDT

Hi! Just a quick update. Jake may get out of the hospital today sometime. His ANC is up to 465 - climbing slowly. They are doing a chest x-ray today and if all turns out well with that, we should be able to go home. Jake seems to feel much better and had 3 bowls of cereal last night - finally wanting to eat! He ate this morning too, so he seems more like himself. His hemaglobin is at 9.6 (good) and platlets are 52 - low, but hopefully they will come up too in the next couple of days. We are going to keep him home from school until we find out where his counts are on Thursday. We want to give his body time to recover from this cold and get his counts up. Thanks for checking in! Love, Kellie :~)

Saturday, September 27, 2003 10:04 PM CDT

Brandon and I just got home from the hospital. Jake is doing good. He is still running a fever between 100-101, but he seems to be feeling pretty good. He got a blood transfusion this afternoon, so he has his color back and was more lively than the last couple days. We started breathing treatments this afternoon too as his cough was getting to that point it alway does when he has a cold. Still can't get him to eat much at all, but at least he's getting fluid in his IV. He'll probably be there until Monday or Tuesday - hopefully his counts will rebound by then. Steve and I are pooped. Brandon is doing well. We have tried so hard this time to spend lots of time with him today, and he came up to the hospital tonight. I think it has helped. Steve bought The "Holes" DVD and we watched that tonight - family movie night in the hospital - complete with Schlotsky's and Bilzzards from Dairy Queen. A pretty darn good night! Thanks for checking on us - the e-mails, calls and guestbook entries are what keep us going! Have a good Sunday! Love, Kellie :~)

Thursday, September 25, 2003 4:38 PM CDT

UPDATE SATURDAY MORNING 9:45
I talked to Steve this morning and Jake had a good night after he got to sleep around 1. His fever has been low - 98-100, so that's good. They have antibiodics started and he is doing ok. His counts this morning were junk (thanks, Traci - I love that description). WBC=.44, Hgb=7.2 and platelets=80's. Steve didn't have the differential, but his ANC is well below 500 - so he has no immune system right now. He will also need a blood transfusion. Hopefully he will ride the cold out until his counts come up Monday or Tuesday and we can go home then. We are in room 603 - calls are welcome, but NO VISITORS with Jake's counts being so low. Thanks for checking in! Love, Kellie :~)

UPDATE FRIDAY NIGHT - 10:15 PM
Steve just took Jake to the hospital. I stayed back with Brandon to make it easier on him. Jake seems to feel ok, but his temp was hitting the 101 mark consistently, so we called the doc and he's being admitted. They were ready for him and expecting it. Oh well. Now we can stop worrying and obsessing over his temp like we have been all night. When his counts hit rock bottom in the next couple days, at least he will be at the hospital and already have antibiodics going. He actually ate a little tonight and was up for playing a couple of board games, but he is still a green snot factory and the temp would just not give. Thanks for checking in. Continued prayers for Cameron - still dangerously low counts and now two infections he's fighting - still in the PICU at the med center. Goodnight! Love, Kellie

UPDATE FRIDAY - THE 26TH - 1:45 P.M.
Jake had a horrible night - little sleep - so much snot he was spitting up tons of it and just feeling awful. His fever stayed around 99-100 through the night and is around that now. I took him to up to the clinic this morning and we did his counts again and his WBC's and ANC dropped significantly. His ANC is now 1200 and it was 6200 yesterday! So looks like his counts are heading down fast. They let us come home with an antibiodic, but with explicit instructions to call and plan on being admitted if Jake's fever hits 101. I think we will be lucky to hedge the hospital this weekend, but you never know! After an hour or so of crying and struggling to take the new antibiodic, he finally got it down. His temp is even a little lower now 98.9! He has even gotten up of the couch and is playing downstairs with Brandon, so for the next hour at least, it looks like he might be ok. Let's hope his counts don't drop too much more for his own system and the anitbiodic to handle this infection. We'll upate if something changes. Thanks to Kathy Juma for picking Brandon up from preschool today and feeding him lunch - you are the best! Love, Kellie :~)

URGENT PRAYERS NEEDED PLEASE!
Please pray for our little friend Cameron. He was doing so well and even going to preschool this week at home in Remsen, IA and had to be ambulanced suddenly yesterday to Omaha with a high fever. He got to Omaha and was in urgent need of platelets and NO PLATELETS!!! Again! This has happened to them before, but he's critically ill now and needed them so badly. PLEASE GO GIVE BLOOD!!!!! They finally located some last night and he is currently in the PICU at the Med Center. You can visit his website at www.thestatus.com Last name "Miller", Password, "Hawks 1" Please visit his site and leave an encouraging note for his wonderful family!

Hi, Everybody! Jake went to school Monday and Tuesday and then we kept him home starting yesterday for the rest of the week. He seemed tired yesterday and then last night started complaining that his throat hurt some. This morning he woke up late and with a cold. We went into the clinic today for counts and they checked his temp and he's running a little fever (around 100). His counts are still high - WBC's=6300, ANC=6200, Platelets=171 and Hemaglobin=9.5. So we just have to keep an eye on his cold and his fever as his counts go down the next couple of days. If it gets to 101, then we will go in for another count check and admission if his ANC is below 500. Hopefully his counts will stay high during the first part of this cold to fight it off some before he drops down. Last time on this particular chemo, his ANC was around 1000 at this point, so he seems to be doing better than last time. I know he has felt better this time around. Hopefully he won't bottom out and we won't see Children's Hospital again until Monday morning when we go back in for counts. As much as I would love to dine at the cafeteria all weekend, I told Jake it's fine by me if we end up staying home instead! :~)

All in all we are doing well. I have a jewelry show scheduled for Monday night, which I am excited about. Sometimes we do normal things and we almost forget about what happened this past year and it feels so good. Sometimes, though, when we do normal things, especially without the kids, I almost feel guilty for it. Like are parents with a cancer kid supposed to be going to a football game and tailgating all day with friends? I know it's good for us and we need it, it just seems so weird to do fun things sometimes when we have cancer looming over our heads. Just part of the deal I guess.

Really the one suffering the most right now seems to be Brandon. During our chemo stays he gets so sad having us apart and being with different people everyday. He loves the people he's with, he just gets down as the days wear on when we are at the hospital. We try and have him come up to the hospital every night so he feels a part of things, but he is struggling with the whole deal. I think he will be the most relieved when our hospital stays are over. Preschool starting has really helped him, and he loves that and Kindermusic. I will never forget the first year of Kindermusic. He would run football plays in the middle of the circle all of us were in the whole time. We would be singing and clapping and there was Brandon in the middle of it all hiking and running his imaginary football. Who knew he would be loving it so this year when they are really learning notes and how to play an instrument? In high school, he'll play football and have to go play in the band at halftime! Steve says no respectable football coach would allow that kind of nonsense! :~)

The Huskers play tonight against Southern Mississippi. Hope they win! We'll be rooting them on! Prayers for Jake's fever to stay low and we'll update again on Monday unless something exciting happens - like Steve getting arrested or something - HA! I'm really picking on him in this update aren't I? I must have a crush on him. Make it a great weekend and go give some blood!
Love, Kellie, Steve, Jake and Brandon :~)

Saturday, September 20, 2003 6:14 PM CDT

We are home! Chemo #11 is OVER!!! Only 3 more to go! Jake is feeling great - like nothing ever happened. Not one bit of nausea - so amazing - thank God for how well he takes this! We got home around 4 this afternoon and we are pooped. We are just so glad to be home. Thanks to the nursing staff up on the 6th floor for the exceptional care as always. Thanks too to our nurse Anisa from the Oncology Clinic for getting us started and out of there so quickly today and for her friendship. Thanks to Dr. Harrison, Dr. Thompson and Dr. Gnarra for watching over Jake this time around. I can't say enough how grateful we are for that hospital and it's staff.

We had a big surprise last night when Amy and Morgan Yarnell and Laura and Connor Eckborg came up and visited. The kids had a great time and Brandon loved having a buddy of his there too! Plus they presented Jake with a Gameboy Game Cube that Jake won for selling the most in his school fundraiser!!! We couldn't believe it! Jake's class won a pizza party too that he is so excited about! Jake insisted Dad set up the Game Cube first thing when we got home and they are enjoying it now.

Hopefully Jake can stage off the low counts, fever and nausea he got from this chemo the last time around. Hopefully that was just a fluke - Jake has been so amazing through all of this. I cannot tell all of you enough how ours is such an easy story through this treatment. So many children suffer so, so much from these chemos. How Jake has done it, I don't know. But I am so thankful. His energy is higher than ever and it astounds me.

We will go in for counts on Thursday. We will keep him home from school on Wednesday and probably Thursday and Friday too as his counts should drop then. He'll have his homebound teacher, Mrs. Sobczek on those days. She came up while we were in the hospital too. We'll start shots tomorrow night. Thanks for checking on Jake!!!
Love, Kellie, Steve, Jake and Brandon :~)

Friday, September 19, 2003 12:25 AM CDT

Hey, Everyone! Here we are in room #617 at Children's. Jake is doing very well - no nausea or loss of appetite so far. He slept good last night and except for the occasional mood swing due to tummy meds, he is doing very well. He's playing with his cars right now - big pileups here right in front of the room's window. We are in this time with another oncology patient and so we have been visiting and playing with her and her family today. Please say special prayers for Elizabeth - a wonderful and beautiful little girl with a great family - please pray for answers in her treatment and her full recovery.

Jake went to school all week and we made a visit to our local firestation on Wednesday afternoon with our friends Justin, Brianna and Kathy Juma. The kids loved it and the firemen at station #63 were very gracious. We went out to eat Wednesday night also - no, not at Valentinos, but Godfather's instead so the kids could play video games.

We got into our room yesterday at 1 and started chemo around 4, so hopefully we will be out around 4 or 5 on Saturday. I stayed the night last night and Steve will tonight. This is round #11 consisting of Vincristine, Cytoxin and Doxorubicin (Adriamiacin). Our last 3 day stay!! Wow - it's getting so close and Jake continues to do so incredibly well tolerating all of it.

Thanks to Julie Rannels and the American Red Cross for the flowers and the big package of goodies for Jake yesterday -he loves all of it! Please continue to give blood. Omaha just had to send out 700 units down to the areas affected by the hurricane, so once again, the supply is depleted. Your blood is needed now more than ever. We couldn't make it through this treatment without it, so you giving contributes to the success of Jake's treatment along with all the other little kiddos out there fighting the beast.

Thanks to Jen Holl and Kathy Juma for watching Brandon this time around. You guys are the best-such incredible friends! Hope you all have a great day! Beautiful fall weather here - high of 80 and sunny. Looks good from our window. Make it a good one! Love, Kellie, Steve, Jake and Brandon :~)

Monday, September 15, 2003 3:59 PM CDT

Hey, Everyone!!! Jake is doing great today. He was at school all day and seems happy as a lark this afternoon. He is limping some, but otherwise he is good to go! We have an echocardiogram on Wednesday morning to check for any heart damage from the chemo and then he will be admitted on Thursday morning for chemo #11 (out of 14). This will be a three day stay and we will be discharged sometime Saturday night.

The weekend went well. Steve put together an incredible tailgate on Saturday for the Husker game. There were over 50 people there and he had an array of food and did such a great job at the grill. I think everyone had a good time and the Huskers won. Steve's birthday is tomorrow - Tuesday - he will turn 34! Happy Birthday to the GREATEST dad and husband in the whole world!!!!

On Sunday we went to see "Secondhand Lions". What an incredible movie. This is a must see for all kids and even if you don't have kids, you will LOVE this movie. It's about a neglected boy dumped at his old uncles' house by an uninvolved mother. The boy is so sweet and it's a very funny movie. I couldn't help but look at the sweet boy at the end of the movie, though, seeing his joy in just being loved finally and being so sad that there are so many kids out there that are not wanted, loved or taken care of. I thought about those kids with parents that don't even want them or don't spend that much time with them and here are Steve and I and all the other cancer parents out there that want their kids so badly. What sense does it make that there are all these parents fighting everyday to keep their kids alive and away from the hands of the cancer monster and then there are parents out there not even loving the kids they have. I got so worked up about it, I couldn't stop crying after the movie. I know nothing in life is guaranteed to make sense, but sometimes the realization of the injustice of our situation and others is so overwhelmingly sad.

Yesterday I said to Jake that he would be at school from Monday through Wednesday this week, but then on Thursday we would be going in for his chemo. I was telling him very excitedly, "Isn't it great, Jake, that you only have 4 more chemos left and that by the time it gets cold around here, you will be done with chemo and not have to go into the hospital anymore!" He replied sadly, "But then I don't get to go in to the clinic anymore either." Steve said, "If that's not a true testament to how awesome that clinic and those people are up there, I don't know what is." Jake loves that clinic and so do I. I love how the whole office is open and if I want to talk to a nurse or a doctor, I just walk up to the big, open counter and say, "Dr. Abromowitch, can I talk to you for a minute?" The accessability is so empowering for us as parents. Plus the place is just so darn fun for the kids. When Jake came out of school on Thursday, he was crying. He said he was upset because one of his classmates had cut his favorite hat, but I knew it was more than that. He was just plain sad. We have seen it before. Too much of being "The Cancer Kid" in a school of children not affected by the disease. He was in tears the whole afternoon until we got to the Candlelighter's picnic. His mood immediately changed. He was with the staff and other kids that knew exactly how he felt. Then the next day he went with Steve up to the clinic. Steve said he almost ran up there and seemed soooo happy once he was there, playing Nintendo and dancing around. He went back to school that afternoon a refreshed and much happier boy. It's such a place of comfort and acceptance for him. It's a home. Thank God for that place and the people in it!

All else is good. Brandon is doing well, although I think he's really dreading the upcoming chemo. He is just so darn tired of us being gone. It seems to really bother him now more than even before. Only 4 more to go, Brother, and WE WILL MAKE IT! Hope everyone has a good week and we'll update when Jake gets admitted on Thursday!

Thank you to EVERYONE for your continued love, help and support!!! Love, Kellie, Steve, Jake and Brandon :~)

Friday, September 12, 2003 11:06 AM CDT

Hey, Everyone!!! Can you feel the excitement of a big game building? Hopefully Saturday's game of the Huskers vs. Penn State won't be much of a game, but we are excited as fans to show those Nittany Lion fans how to be nice, gracious and sportsmanlike. They were soooo bad to our fans out there last year. Steve went and he said he has never been so abused at a game before - worse than Miami or Florida fans - no offense to anyone of course in any of these statments. We are planning a BIG tailgate on Sat - we will be underneath the 9th street bridge, so come on over and stop by if you would like. We usually do this just about every game. Of course with Jake's treatment this year, it's just not going to happen every game. But the timing was right for this game and we have a bbsitter all lined up. Steve's newest additions to his tailgate this year are a new improved flag pole and a turf to have under our feet and to center under our tent. His friend, Justin, CAD designed the Husker "N" and then we painted it on there the other night - it looks great. Steve is so proud!! GO HUSKERS!!!!!

Jake is doing very well. He seemed a little emotional and pekid yesterday when he got home from school, so we decided to take him in for counts this morning just to make sure his hemaglobin was ok. Everything looks good, WBC=6000, hemaglobin=10.3 (it came up!) and platelets=167. So he is good to go until our next chemo on Thursday the 18th (#11/14). He is feeling good. Limping a little and having sore feet, but nothing too major.

Last night we went to the Candlelighters (support group) picnic. The three oncologists, some of the nurses, the social worker and the child life gal from the oncology clinic at Children's were all there. It was great to have them all there and it was a lot of fun. Kind of chilly and rainy, but it was fun. Jake and Brandon had a ball running around out there and they were pooped by the time we got home.

Wow - fall is here and the weather is beautiful. Still some 90 degree days here and there I'm sure we will have, but overall the 70 degree days are upon us. I can't believe we are in the same season that Jake will be done with his treatment! We are really starting to get excited for Jake's trip to Hawaii (we will probably go towards Jake's birthday at the end of January) and looking so forward to life without chemo! It's kind of scary to think about not being on treatment and having to face the fear of scans every 3 months, but I'm sure we will get used to it and after a while it won't seem so ominous.

Well, I should go pick up Brandon from preschool! Have a great weekend, give blood and love up your kiddos!!! Make it a good one! Love, Kellie, Steve, Jake and Brandon :~)

Tuesday, September 9, 2003 5:54 PM CDT

Hey, Everyone!!! Still an urgent need for blood - please go give! It's at a 20 year low and only a 12-24 hour supply around and they usually like a 3-7 day supply. So much of the blood is used by cancer patients - a majority of it and treatment for their cancer wouldn't be possible without transfusions. Don't think someone else is going to do it. Very few are, so please go and donate!

OK, I've climbed off of my soapbox now! :~) If you saw the Midlands section of today's paper, you might recognize two certain boys named Jacob and Brandon on there. Their picture and Jake's name appear in support of the Red Cross's effort to get people to donate. Jake and I were on the news last night too. I hope it helps.

Jake went to the hospital this afternoon for counts. His WBC are at 6000, so we are doing tonight's shot and then will be able to quit those until after the next round of chemo. His ANC is around 4000, Hmb was a little low at 8.3 and his platelets were 131. So we will watch him and see if he is showing any signs of needing a transfusion. Otherwise, we don't have to go back in until the 17th for an echocardiogram and EKG. This is routine, as chemo is very damaging to the heart - they have to see how it's holding up through treatment. Jake will go in for his next chemo admission then on the 18th - it's round number 11!!!! A three day stay of the nasty stuff (Adrimiacin[Doxorubicin], Cytoxin and Vincristine) that causes radiation recall and wiped him out so bad the last time we had it. Hopefully he will do better with it this time. This will be our last dose of the Adriamiacin[Doxorubicin]. He'll have met his max for a lifetime. It is the real hair and blood count killer and the one that he ended up in the hospital with last time. We won't miss that orange stuff dripping away over 48 hours. How cool that this will be the last of this chemo. After this round then we will have 2 more 6 day stays and one overnight. I still can't believe we have made it this far!

Steve's cousin Jodi wrote me an e-mail the other day and I thought it was one of the sweetest things anyone has ever said to me. She wrote, "I was thinking about your family and my Uncle Gary and thinking about all of the things you have been through in your lives. [Steve and I's mom's died of cancer at 40 and an asthma attack at 46 respectively]. I was thinking how unfair it was that God let Jake get cancer and then it hit me....God didn't let Jake get cancer, but I believe that He knew cancer would come to Jake. So God blessed Jake with that incredible, unforgettable personality, knowing that all those he came in contact with would be moved and inspired and delighted to know him." Thanks, Jodi for the great e-mail and for putting him so in your thoughts and prayers!

Another note on human kindness...I got a call the other night from the man that bought our house we used to live in. He said he had a package addressed to our boys from Hawaii. He read me the return name and address and it wasn't familiar. Probably not since I don't know anyone from Hawaii. He was kind enough to bring it over and the boys were thrilled when they opened the package. Inside were the two most adorable Hawaiian shirts I have every seen. They are real Hawaiian shirts - not the cheesy ones us mainlanders come up with - but very authentic and classy. They fit the boys perfectly and they plan to wear them on the plane to Hawaii for our Make-A-Wish trip. There was also a beautiful hardcover book about Oahu that we thouroughly enjoyed looking through. There was a card and it was signed by Jennifer and Peter. So Jennifer and Peter, whoever you are, Thank you so, so much. What a wonderful surprise to get your package!!!!

Something else I have to share. Steve's other cousin (big points the Beresh cousins are scoring here in this journal!!!), Lisa, just sent me an e-mail saying instead of our usual gift exchange we have between the adults of Steve's family, why don't we give the money to one of Jake's favorite charities. I hope everyone agrees, because I think it's a fabulous and very thoughtful idea. Wouldn't it be cool if other people reading this thought, "Hey, neat idea!" and put money that they usually would spend on Christmas gifts that they probably don't need and give it to charity instead? Some suggestions might be Caringbridge, Children's Hospital, The Red Cross, Camp CoHoLo, The Children's Oncology Clinic, Make-A-Wish or the National Childhood Cancer Foundation. I hope some of you will think about it and incorporate it into your Holiday Celebrations this year!

Why is it this thought never occured to us until tragedy strikes a family? People will read this and think, "Oh, Kellie, you were always a giving and thoughtful person." Yeah, I was when it was convenient for me, but I didn't ever make an extra effort to be there for friends and strangers in need. Unfortunately, it so easy to get wrapped up in our own little worlds, being good people in general, but not really giving a lot to others. I wish I would have been better in the past about giving of my time and creative about ways to give more money than our usual contributions. I was thinking the other day about this 8x10 picture of Jake I have on my dresser. It's such a poignant picture of him of just his face and his bald head. I thought, "Will I take that picture down and replace it with his new pictures as time goes on? Nope, I'm going to keep it up there to remind me of this year and how much I value those two little boys, my wonderful job as their Mommy and how much I need to give to others going through the same thing." Illness and death can be so damaging to a person and a family, but it can also be so inspiring and life changing. I hope I can honor Jake and his battle with this monster well enough in what I do from here on out. I sure will try.

One last note, Bradon went in for his 4 year check - finally - today and he is one big boy. 90th percentile for height and 97th for weight. All looked good with him and it's still confirmed we have the best pediatrician on earth! I had written him a letter thanking him for saving Jake's life and being there for us so much in the beginning when he was the only doctor we knew and trusted. He was so cute, because he said when he went back home to Maryland with his family on their vacation, he took the letter with him to show his mom! How sweet is that? Thanks, Dr. Fran Harrison for being such a kind and thorough doctor!!!

Hope you all have a great week!
Love, Kellie, Steve, Jake and Brandon :~)

Thursday, September 4, 2003 2:56 PM CDT

UPDATE - MONDAY NIGHT 9/8
There is a Patriots blood drive this Wednesday the 10th, from 6:30 am-6:30 pm at the Holiday Inn Central on 72nd St. You can go anytime and donate there. Please do - Only 5 percent of eligible donors ever donate and right now that's even lower!

UPDATE - Saturday, Sept 6th.
Jake's counts were good yesterday (ANC 1150), so he was able to go back to school and get the little smokies for lunch he was so afraid he was going to miss. Counts may be on the lower side today, so we have stuck around here, watching the Huskers win! Steve went down to the game today - hopefully he relaxed enough to enjoy himself - he's such a worrier! We will go back for counts on Tuesday and will hopefully be able to stop our Nuepogen shots then. I have to tell you the cute thing Brandon said today. I asked him where he got his cute little cheeks. He said, "From Jesus, Mom. He's dead you know. God's not dead, though Mom, SHE'S still alive." Cutie Pie. Channel 6 - WOWT will be out here to the house Monday afternoon to do an interview with us about the need for blood donations. Jake can't believe we are going to be on TV again. It should be on Monday or Tuesday night's news at 5 and/or 6 - will let you know if I find out for sure. Hope you are having a great weekend! Kellie :~)

CONTINUED PLEAS FOR HELP!!!! We have a VERY critical shortage of blood going on right now here in Omaha!!! The blood bank is in desperate need for blood and platlet donors!!! One of our fellow cancer buddies needed a platelet transfusion last night and couldn't get one because the blood bank was out! Please go give so that this little 4 year old boy and all the other little kids out there needing blood can get what they need to feel better and survive. I can only imagine what I would have felt like just two short weeks ago when Jake desperately needed a blood transfusion if they would have come in and said they couldn't get any blood. Very scary! I challenge all of you out there to go give blood or platelets and then find two friends to do the same. If you can't give, then find three others that can! Imagine if Jake's surgery was scheduled for today - would all that blood that saved his life through surgery be there?! The number to schedule an appointment with the American Red Cross here in Omaha is 271-2588.

Another thing to check out - there are notecards, Holiday cards, calendars and shirts for sale at the website of the National Childhood Cancer Foundation. Their website is www.nccf.org. Very little money is spent on Childhood Cancer Research even though it is the biggest killer of children! I never knew how underfunded finding a cure for childhood cancers is. Please visit this site and make a donation or purchase. You can get your Christmas cards for personal or business use. What a great message to send to your customers that your business supports such a great cause!

Some special kids and their websites to visit I wanted to mention also. Cameron Miller at www.thestatus.com - go to "visit a patient page" then type in last name "Miller" and password, "Hawks 1". We met Cameron and his family at the Med Center when we were getting radiation. He is 4, has Rhabdomyosarcoma and is having a hard time right now. Liz and I went and visited them last night and brought them some Husker stuff as they are big Hawkeye fans. Great family that could use a break! Also a little 3 year old girl who was just diagnosed with Ewing's Sarcoma of her ribs that I just came accross today. Her website is www.caringbridge.org/nd/maddison. Poor thing is sick, can't eat and her hands are burning and peeling from a reaction to the same chemos Jake is on. Please visit these sites and write them a note in their guestbooks. They could really use the encouragement of strangers - it's awesome to see someone in the guestbook you don't know that is praying for your little one!

That's all for now. I'm just about to pick Jake up from school - he is feeling so, so good! Counts tomorrow.
Thanks for checking on us and supporting the things mentioned above. Those fighting the cancer beast need all the support we can get! Make it a great day! Love, Kellie :~)

Wednesday, September 3, 2003 9:34 PM CDT

AN URGENT PLEA TONIGHT!!! Please, please anyone that can donate blood or platlets please do so tomorrow or in the next couple of days!!!!! Omaha is at a critical shortage. In fact a friend of ours - Cameron who is 4 and fighting Rabdomyosarcoma (muscle cancer) - needed a platlet transfusion tonight and couldn't get one because the blood bank here is out of platlets!!! This is critical! They are having to truck platlets in here from some other town so Cameron can get better - how scary! Please go give blood tomorrow - there are little kids fighting cancer in desperate need in Omaha tonight! Please Help!!!!

Jake is feeling great - school today and doing well.
Thanks, Kellie

Tuesday, September 2, 2003 10:37 AM CDT

Hey, everyone! Thanks for checking on Jake! We just got home and he is feeling great. Not one bit of nausea this go around - amazing! He didn't even lose his appetite one time! He was on Itoposide and Ephosphomide for those of you that are in the know on chemos. So that was number 10 and now we are down to 4!!!! Wow! It feels so good to be this close!

Yesterday was just a great day at the hospital. Jennifer and Ryan Novacek came to visit and they brought Jake a pack of gum among other things. Somehow while they were there, Jake got the idea to sell those pieces of gum and cans of pop. He made a sign and set up shop in the hallway right outside our room. He sold sticks of gum, starbursts, pop, juice boxes and water to everyone and anyone that walked by. He enlisted the help of two little girls that were there visiting their sister, convincing them to walk around the 6th floor with a sign and telling people how to get to Jake's store! He had a ball for hours sellig his goods and he made $16! When you sell pop for 25 cents a can, word gets around fast. Doctors, nurses, cleaning people, security and other people's visitors were all customers. Jake's Store will probably a regular thing from now on. It was a good way to pass the afternoon.

Jake was thrilled Sunday night when Morgan Yarnell and Hanna Fry came to visit! They drew pictures and had popcorn and laughed and laughed. Thanks to their moms and to everyone else that visited on this stay. You will never know what a difference it makes to all of us to have people come up there and visit. Thanks also to Grandpa, Grandad, Nana, Amy and Joe and Brooke for watching Brandon. Poor kid - he's so tired of these stays - I could really see the fatigue in him this time of being passed around.

Jake and Brandon and Daddy are wrestling right now before Daddy has to go back to work. Brandon has preschool open house tonight and then starts preschool and Kindermusic tomorrow - he is so, so excited!!! Jake will be back to school tomorrow also. We will start shots tonight and go to clinic on Friday for counts. Prayers please for all the kiddos up there at Children's. So many sick kids up there fighting chronic conditions and diseases. You don't have to look far in that place to find a story worse than yours. Prayers also for Stephanie - a fellow oncology patient at Children's as she faces yet another brain surgery and looks for some treatment to help her. What a great kid she is!

10 down, 4 more to go!!!!

Love, Kellie :~)

Sunday, August 31, 2003 1:03 PM CDT

Hey, Everyone! Yeah! The Huskers won! Jake is doing so well with this chemo (10 of 14). He has had little nausea so far and has been full of energy! We have been doing chemo in the morning around 9 and that really seems to agree with him. One of the tummy meds he's on - Ativan - gives him mood swings - edgy and angry to crying uncontrollably at time - especially at night - but overall he is great. He has been doing some water squirting in the tub this morning after the nurse supplied him with a big ole' syringe and of course he has loved that. Brandon seems to be holding up well with being handed around - thanks to everyone for your help. After the day goes by that I haven't seen him, he seems like he's grown a couple of inches.

That's the hardest part of these hospital stays - just the separation. Last night, I was here with Jake, Steve was at home and Brandon was at my Dad's. We hate that - all being apart. I hear my friends talk about needing to get away from their kids and I am just not there right now. I miss Jake so during the day when he is at school and long to have Brandon around when we are always at the hospital. It's probably the most unsettling thing for us - Steve really has a hard time with it and it breaks his heart. He is such a sweet, soft hearted man. Never afraid to shed a tear when he needs to. I love that about him among other things. I guess that's why we linger so with bedtime now. We used to try and get through the bath, stories, jammies and songs as fast as we could. Now we both treasure that time so. Being able to tuck the boys into their own beds and to kiss and hug them both before they go to sleep feels so good. I hope I can hang onto some of that appreciation when the months take us past all this.

One of our favorite nurses said to Steve last night, "At least you can count what you have left on one hand." Wow - that sounded goood. When Steve was talking to the on-call doctor (oncology) this morning, they were talking about us nearing the end of treatment. Steve said, "Well, we'll be done and hopefully that will take care of it." Dr. Thompson said, "Well, he has done so well with all of this we don't expect anything different." Love that comment. Dr. Thompson has been great this stay - very nice lady. The whole oncology department here at Children's is made up of great people.

Well, I should go eat my lunch. Steve and I are up here trying to keep Jake entertained - it's almost playroom time!!! Yeah!!!!! Love, Kellie :~)

Tuesday, August 26, 2003 10:12 AM CDT

Hey, Everyone! Jake is at school today and is feeling great! He went all day yesterday and will be able to go tomorrow also. He will be admitted on Thursday - hopefully! - for chemo #10. This is a 6 day stay, so we will be in for the holiday weekend and then be discharged on Tuesday. After this we will have just 4 more treatments to go!

It seems almost unreal that we are this close to the end - just three more months! In this stage of the game, when life on treatment seems almost normal (not fun, just normal), I have so many feelings stirring around in my head and in my heart. It's the fear of not being on treatment, the feeling of caution as we could be right back there with one bad scan, thinking how much we will miss the people at Children's and the other families, wondering what it will be like not having to be back and forth to the hospital and the pure joy of Jake just being 6, going to school and playing with friends. I have had a lot of thoughts lately of "I can't believe this has been our year, this is our life, that our son had cancer..." and on and on. It's so unreal that in January we were fighting so for Jacob's life and now here he is so close to having it handed right back to him by the hands of those that have cared and loved him so this past year. When I really think about it, I just can't believe that this chapter is in our family's book of stories. I know in this journal I have not truely expressed how incredibly lucky, blessed or whatever you want to call it, we were to be able to get that tumor out of Jake's head. When we think about it now, we know that his chances of making it through surgery were slim and that if it hadn't been for that Embolization Procedure we did at the University of Iowa, he would not have made it. If he would have had this tumor even a couple of years ago, that procudure might not have been available. There are so many things that we realized and were told after his surgery that made us see just how close his little life was teetering and I just can't believe that it has even happened sometimes. Dr. Chaloupka that did the Embolization said that Jake's tumor was one of the most vascular he'd seen in his career! This doctor does 4-5 Embolizations a day on people from all over the world and my little boy's tumor is one of the worst he'd seen?! His Embolization was 5 hours long - about 3-4 hours longer than the average and 2 hours longer than they thought Jake's would be. In Omaha, Children's Hospital wanted to wait until Tuesday to do Jake's surgery - they wanted to be ready - the surgery waiting room that is usually filled with families was empty that day except for us. It was the first time in a 26 year career that Dr. Hellbusch (neurosurgeon) asked one of his partners to be in surgery with him. At one point in the surgery, which one of the neurosurgeons called at times "a nightmare", Dr. Hellbusch, his partner and his resident all had hands in Jake's head, trying to stop the bleeding. My little boy lost 8 units of blood that day - that's 3 and a half times his total blood volume! Can you imagine what that was like? All of that pouring out of his head while they are trying to see what's going on and the two anesthesiologists pumping blood back into him as fast as they can in these two huge catethers they had in his ankles?! At one point during the surgery his pressures went down into the 40's, Dr. Hellbusch said they all picked a bleeder to put a finger into - all 6 hands, holding Jacob together - then he bounced right back up and they kept on working. Actually getting the tumor out of his head was easy - the Embolization left it mushy and necrotic. Dr. Hellbusch said he could have scooped it out with his finger - right there on top of his brain. It had destroyed much of Jake's skull in that area above and around his right ear and at the base of the cranial cavity. Dr. Hellbusch said he could have put a spoon through his skull - it was just mush in that area. The bone fell to pieces and they removed as much as they could safely without compromising the auditory and facial nerves and giving enough to support the remaining part of his skull. The tumor had been smashing half of Jake's cerebellum. When they took it out, his brain didn't move. By the next morning in a follow-up MRI, we could see that overnight, his brain totally moved back into that space where it was supposed to be. I left a message after the surgery on Dr. Chaloupka's voice mail in Iowa telling them that Jake had made it through surgery and was doing great. His nurse called me back overjoyed and said they listened to my message 4 times and they couldn't believe it - after I talked to her I remember thinking, "They didn't think Jake was going to make it."

The miracle of that surgery kept going too - the two anestesiologists came out and said that Jake was awake, off the respirator and talking as they were taking him to recovery! He stayed there for about an hour and then we met him in the hallway to go up to the ICU. When we came around the corner by the elevators, we were talking to the nurse and Jake started hollering, "I hear my Dad's voice. Is that my Dad?" We walked up to him and he had a huge turban on his head with two blood drainage lines and bags coming out of it, his eyes were swollen shut, there was an IV line in every arm, leg and hand and he was on monitors, but he looked great! He had been so sick from Embolization Syndrome (illness you get from having that tumor dying inside your body after the Embolization)the two days before surgery and now he had his color back and sounded more like our old Jake than he had in days! When we got to the PICU, they were ready for a critical kid and instead, they got Jake, talking and wanting to know who was in the room, what they were doing and giving orders not touch his IV's! After our first night in the ICU, they moved us to another room the next day. "This is the room we put the most critical kids in and we have one coming in that needs it a whole lot more than Jake does," said the nurse. We spent one more night in the ICU and then back to the 6th floor on Thursday. The ICU doctor told me that Jake's blood work had been normal ever since his surgery and that is the first time he had a kid that had lost more than 3 units of blood have normal blood work - usually it takes 2-3 days to have normals after something like that! On Saturday we went home with Jake who was a little unsteady on his feet, but otherwise doing fine.

We didn't know for sure until Friday that his tumor was cancerous. Nothing like being on a huge high and then crashing down with the diagnosis. But even going home with that, we were thankful that we still had our son. As time passes and we hear story after story about that day, we are amazed at the gift we were given January 28th. In one week, Jake turned 6, went to the Univ of Iowa, had the Embolization, spent the night in the ICU (nightmare of a night - another story in itself), drove back to Omaha in an Ambulance for 4 and a half hours, got really sick with Embolization Syndrome (the worst he has felt through this whole thing), had surgery, spent 2 more nights in another ICU, was diagnosed with cancer and had a CT scan before going home. It was quite a 6th birthday. Now when Jake asks us what we gave him for his 6th birthday, we say, "an Embolization!" It's a gift we'll forever be grateful for!

I wanted to get this story in Jake's journal before I forgot some of the details. This journal is a way to stay in touch with Jake's situation to the people who log on and read it, but it's also a record of our family's life and something we can look back on someday and think, "Man, I can't believe we did that!" No one said life was easy and tragedy happens to people all the time. All the time and there is so much of it. We are not unique in the pain we've had this year. Pain is all around us. God gives us people and strength to get through these situations that otherwise we would not be able to. He doesn't give us the disease or the accident or the fire, he gives us the tools to get through it. Where it comes from, I don't know. I don't care and it doesn't really matter. It's part of our story and our life and I'm glad to be in it despite the hardships. Faith does't make things easy, it makes things possible.

We'll let you know what happens on Thursday - visitors always welcome! Thanks for reading!
Love, Kellie :~)

Friday, August 22, 2003 9:52 PM CDT

Hi! Well, Jake made it through the whole school day! That's two days in a row of being at school all day! He seemed tired this afternoon, but after a little rest with his favorite TV shows, he was back in action. He was there on Wednesday too, but had to leave an hour early. He should be able to go next week Mon-Wed and then hopefully we will be back in for chemo on Thursday the 28th for round #10 (out of 14).

I took Jake in for counts Thursday morning before school and then called for results. There was some confusion on his counts b/c originally we were told his white blood cells were at 3900 and his ANC was 3400. I thought this seemed low, but just thought that maybe his marrow was just getting sluggish from all the chemo. I talked to one of the nurses and she recommended bringing Jake back in today for a count to see if they had jumped b/c we had had 10 shots and it seemed going the whole weekend with doing shots was going to lead to a really high white count and some really sore feet as a result. Well, one of the nurses called today and said they rechecked his counts and they had read me the wrong numbers on the phone - his white blood count was actually 9200 and his ANC was actually 8000, so no need for another count or anymore shots. I can tell today he got one too many as he is limping and complaining of sore feet. So we don't have to go in to Children's again - for anything scheduled at least - until Thursday when we go in for admission! We love that! We went to Valentino's for dinner tonight(where else?) - thanks for the gift certificate, Rachelle!!!

First grade seems to be going well. We had Jake's IEP meeting this afternoon to get his homeschool teacher set up. He will have Mrs. Subzcek again this year for the hospital and when he's home with low counts. Things are a litte faster moving and important now in first grade, so I know they will do everything they can to keep him up to speed with the class. He is really enjoying being in school and being with all his friends! It's such good therapy for him to be back there. His teacher this year, Mrs. Pratt, is very flexible which is a must as we don't really know his schedule from day to day. Even with starting the year out being in and out, I think first grade is going to be a great one for Jake!

I had my Anniversary sale with Premier Designs Jewelry last night, and it was a huge success! Thanks to all that came! I had so much fun being in that atmosphere again - I really have missed doing the shows and hanging out with all the gals. It was good therapy. Going to the bank to deposit all the checks from the show will just be an extension of that therapuetic experience!

Nothing really planned for the weekend. Jake has his fundraising material from school and he is bound and determined to start making some big sales for that, "The highest saleman wins a Game Cube, Mom!" Oh Boy! We'll probably be hiking around the neighborhood in all this heat while he delivers his sales pitch. We'll have to put the bug spray on - I now personally know 3 people here in Nebraska who have the West Nile Virus. They have all been very, very sick. All of us should be careful, but with Jake there can be no chances taken. It's pretty scarry.

Oh, I almost forgot! Good news! Our insurance company approved Jake's radiation after only having to file one appeal!!! One less thing to worry about - thanks, Dr. Raman - must have been a good letter you sent!!!

Hope you all have a great weekend! Thanks for checking on our Jakieboy! Don't count the days...make the days count!

Love, Kellie, Steve, Jake and Brandon :~)

Tuesday, August 19, 2003 3:36 PM CDT

We are home! We got home around 2 today. After sleeping most of the day away yesterday, Jake started pepping up around 8 last night. The blood transfusion helped immensely. He got his color back and tried to eat a little last night. He slept good and woke up around 9:30 this morning. He was back to his old self today. His ANC jumped to 850 this morning, so they said we could go home as he hadn't had a fever. His platelets were at 21,000, so we did get platelets before we left. Then they unhooked him from his port and we were on our way. Looks like it was just a neutropenic fever - something you get from having no immune system when your counts are too low. No bacterial infection showed up in the cultures and he does't seem to have a cold or anything. He is doing well now and will probably go back to school tomorrow. We will be back in the clinic on Thursday for counts and hopefully be able to stop our Neupogen shots by then. We are on track for chemo next Thursday the 28th.

Now we play our little game of catch-up. Steve is at work this afternoon and I am getting ready for a training I am doing tonight for my jewelry business. I am starting to do shows again with my anniversary and sample sale this Thursday. It's an open house from 7-9, so if you'd like to stop over, please do so. For those of you that don't know, I sell Premier Designs Jewelry and have for the last 3 years. I haven't been able to do shows since Jacob's diagnosis, but I am going to try and do a couple a month for the rest of the fall and then add more come January. I have continued with doing trainings for my group, but have missed doing the shows, so I am really looking forward to getting started again.

Thanks so much to Kathy Juma, Steve's Dad, Gary, and our good friend Joe Hartnett for watching Brandon during this unexpected stay. Thanks also to the great nurses, docs and child life people up at Children's ER, 6th floor and the oncology clinic. What a great place filled with great people - we are so blessed to have their care and friendship.

Jake took some blood - so go give some back!!! Make it a great day! Love, Kellie :~)

Monday, August 18, 2003 1:19 AM CDT

UPDATE! Monday Night
After a very sleepy day Jake does seem to be doing better. He did not go to sleep until approximately 2:15am Monday and around 4:15am he had a reaction to one of the antibiodics that he was on. It turned his head bright red with very bad itching. He woke up like a crazed animal wanting to rip the skin off of his head. Thankfully it passed fairly quickly and he went back to sleep. He is now on Benadryl before he receives this drug in order to help prevent some of the reaction, this has been helping, at least no more itching. His ANC was up to 130 this am. They will do bloodwork on Tuesday to check his counts. His fever has been better today it has been running 98.3 to 99.3 with only being in the high 99's a couple of times. He did receive a blood transfusion this evening, as his Hemaglobin was pretty low. About half way through the transfusion he began to feel better. He started asking for food and sitting up more in his bed. We still don't know about the blood cultures, but are hopeful they remain clear. It looks like a Wednesday dismissal unless his counts skyrocket overnight, then maybe Tuesday afternoon. Thank you so much for checking on our Jakieboy. Steve

Just a quick update as it's past 1 a.m. Jake is in the hospital. He started running a fever last night and then tonight it spiked into the 101's, so we called the on-call doc and she said to bring him into the ER. We numbed up his port and put him in the car - he was crying and so scared because he'd never been to the ER before and he didn't want to go to the hospital when it was dark. Poor kid. And I thought giving him his shot was bad enough tonight b/c he was giving us this sad cry during it about being tired of all of this and not wanting to do it anymore. Steve and I both had tears in our eyes as we were doing it. Your little 6 year old boy crying because he's heartbroken and tired - it's hard to take sometimes. Anyway, they accessed his port when we got there and the doc checked him out. They did a strep test which was negative and ran his counts. His temp was only 99.8 when we got there thank goodness! His ANC is only 90!!!! That's dangerously low! His platelets are also the lowest they've been at 46 and his hemaglobin is ok at 9.3. They admitted him to the 6th floor and Steve stayed with him. Steve's dad came over to stay with Brandon when we went to the ER and I will work on a place for him to be tomorrow and then go up to the hospital. Jake is feeling fine and didn't even feel hot when I left, so that is good. He was pretty bummed about being there, but what can you do? This round of chemo has hit him hard. His bone marrow is tired and we need to be careful in case this is a bacterial infection. He basically has no immune system right now to fight it. They ran cultures which we will see if they will grow anything in the next 24-48 hours and they started him on two antibiodics through his port. Hopefully he will be able to come home Tuesday or Wednesday.

I will update more later. He can't have any visitors with his counts being so low, so as much as I'd love to see anyone....we can't. I've decided not to feel bummed over this being the first time he's had to go in for a fever admission. I am just happy and thankful that we have gotten through 9 treatments before this happened as most kids are in with fever with every treatment. This is just the way it is and it's part of it. We're just rolling with the punches right now and taking things one day at a time.

Love, Kellie :~)

Friday, August 15, 2003 10:47 AM CDT

Hey, Everyone! Thanks for all the notes on Jake's good MRI results! We are happy campers around here that's for sure. Since the bad one we had a month ago, Steve and I were so fearful that we were heading into the cycle of treatment after treatment until the inevitable would happen as so many of these kids do. We stopped making plans for the fall and beyond. When the boys would ask about when are we going to Hawaii or when is Jake going to be done, we would just say, "I don't know." We were stuck in wait and be sick to our stomach mode. Now we are really thinking we will be done with this come December and HOPE has entered this house once again - what a great word!!! Steve even said that we need to think about what we want to do in Hawaii and talk to our Make-A-Wish Gals. Then right on time yesterday, here comes a package from our Make-A-Wish Coordinators, Bertie and Pam. It was filled with Hawaiian goodies like a Hawaiian Scooby Doo (how did they find that?), a starfish, Hawaiian pens and Hawaiian decorations. The boys were so excited and I let myself be there too. I hung the decorations right over their beds. Brandon said this morning he had two good dreams in a row about Hawaii last night!

Jake went to school in the morning yesterday and then I had lunch with him at school. We then headed out to Children's for counts. His were all good. ANC=1300, Platlets=99 and Hemaglobin=9.9. So Dr. Abromowitch said send him to school Friday and then lay low for the weekend as his counts will probably drop and come back Monday morning. While we were up in the clinic an 11 year old girl brought up $250 worth of gift certificates to various places to eat for the families in the clinic. This sweet little girl asked her friends to bring gift certificates instead of gifts for her to her birthday party! How awesome was that?

Jake was thrilled to be able to go to school today. As we were just about to walk out the door, though, I heard him run to the bathroom. He threw up and was feeling pretty miserable. He said he didn't feel good right when he woke up. Of course he didn't want to tell me as he thought I wouldn't let him go to school! So we took some Zofran and then rested a while. How much do we love Zofran? Tons - he felt better a little while later, so I took him up to school. It's been an hour and a half, so he must be doing ok. He hasn't been nearly as tired this week -not a nap to speak of even with school starting - so I am just going to have him go all day and he knows he can call if he wants to come home. Hopefully counts will be up again on Monday and he can get back there next week. Jake loves first grade. Last night Brandon picked "Go, Dog, Go!" to read before bed. Jake said, "Let me read that, " and he read half of it with a little help from mom. He was so proud of himself! First grade delivers such a special gift in reading and Jake is ready to receive!

Some sweet and funny things said by my boys that I have to share. We always check on the boys before we go to bed and with the great news of a clear MRI we got on Wednesday, Steve whispered to Jake after he bent down to kiss him, "You are going to be alright, Buddy." Such a statement of relief and hope again! Now we switch to the funny. When Jake was in the hospital last week, he was playing with the cushions on the couch in his room, making them into walls of his army fort with Uncle Jeff. He told Jeff he had to poop and started to move the cushions to get through. Before he did, though, he stopped, stood at attention, saluted and said, "General, it has been a pleasure working with you on this project. It is a shame the fort has to be destroyed because one soldier had to poop!"

On that note, I will wish you all a great weekend! Don't count the days, make the days count (got that from another mom's website and it's my new motto!)
Love, Kellie :~)

Wednesday, August 13, 2003 12:57 AM CDT

Jake's MRI results look good!!! I talked to Dr. Raman and Dr. Hellbusch this morning and both of them thought that there was no change from the previous MRI's. The area in question is the one filled with packing material and scaring from Jake's battle in surgery when they removed the tumor. Niether of them think it is new tumor growth. The blood clot that is in his transverse sinus from surgery is still there and it is stable. In fact the sinus has opened up some and is somewhat functional again. Dr. Hellbusch would like to do another MRI in 3 months to check on things, but both of them said we have nothing to worry about right now. Needless to say, Steve and I are VERY relieved! It has been a hard couple of days, waiting for these results. We weren't expecting them to come out a different way, but you just can't function and feel good when you don't know for sure.

We are having MAJOR internet/e-mail problems! I am typing this on our laptop as our desktop is totally off-line. If you have e-mailed me and I have not responded, that's why. It's hard not having my interenet connections going -hopefully we will figure it out soon - it's not an easy fix.

I do have time to tell you that Jake started school today. He was so excited! He was still feeling poorly Sunday night and finally threw up a couple of times. Monday he was much better and had such a good time at the open house at school. Today he got up at 6:30 a.m. just chomping at the bit to get to school! Last year we were so sad at his first day of school - happy for him, but sad that he was growing up. Today there wasn't a bit of that sadness. There was a time this year that we never thought he'd live to see first grade, so being there today was such a wonderful feeling of hope and celebration for our family!!!! I think Jake felt it too, and he was so ready just to be in school and be a normal kid. Jake will go as much as he can when his counts are high and he's not at the hospital. I don't know if he can handle a full day, so we will just play it by ear on the days he can go. He will miss a lot this first part of the year and Millard will provide the same home-based teacher he had last year, Mrs. Subczek. We are so thankful to be in a school system that provides this service regardless of how much he is able to go to school. With this MRI behind us, we really feel like there is hope for this to be over come the new year!

Hope you all have a great day and we'll keep you updated! Thanks so much for the notes in the guestbook and all the love and support! We appreciate eveyone's concern and help more than we can express! It is everything to us!

Love, Kellie :~)

Sunday, August 10, 2003 10:54 AM CDT

Hey, Everyone! Not such a good day for Jakie so far. He is sick to his stomach and just wants to throw up but can't. He woke up at 6 this morning wanting to get into bed with us. I thought he was probably nauseated, but didn't press the Zofran b/c he went right back to sleep. Then at 7:30 he woke up again and said he was sick to his stomach. We came down and took Zofran. It hasn't really helped. Poor Jakie is just not feeling good at all. He wants to throw up so bad. I made him some soup and before he ate it he said, "Please make this soup make me feel better or make me throw up - please let it be one of those choices." Neither happened. So Steve took him upstairs for a little bath and he fell back asleep for maybe an hour. Now he's up and just laying and watching TV. He moans once in a while saying, "Oh good, maybe I will throw up now." Then it doesn't happen and he lays back down all dejected. If he could just get it off his gut, I know he would feel so much better. He knows that too and that's why he's wishing for it so. This is the first time he's really felt this sick after chemo. His little body is showing signs of wear.

He did well in the hospital. He didn't nap at all on Friday, but took almost a three hour nap on Sat. He never even felt sick once in the hospital. It was a pretty uneventful stay and we are so glad to have #9 behind us. We only have one more of those three day stays with the 48 hour drip of adriamiacin. We have that 3 day stay, three more 6 day stays and one 2-day stay. 5 more total - but whose counting? US!!!

On Friday night, Jake was saying, "I want to go home. I want to be in my own bed." I told him, "Tomorrow night you will be there Buddy - at home in your own bed." Brandon looked up and with a voice full of pure excitement said, "You mean tomorrow night Jake will be done with cancer?" Brandon is as tired of this as we all are!

I talked to Jake's teacher for first grade - Mrs. Pratt. She is excited to have Jake in her class and seems very flexible. Hannah Fry and Bailey Timmons are both in his class this year. I am so glad - they are such sweet and fun little girls that watch over Jake, and their parents make such an effort to keep up with us and include Jake. It will be hard this year as he will only be there hit and miss and not know the class. Last year, he knew everyone before this all started, so popping in and out like he does was not that big of a deal. I'm sure he will do fine, but he gets so down being in class sometimes because he knows he is missing so much. Open house is tomorrow night and then school starts on Wednesday. Jake is VERY excited about the whole thing - he loves the idea of being a first grader!

Talk about nice. I got a call at 9:00 this morning from Dr. Raman, Jake's Radiation Oncologist. I had left him a message on Friday to tell him when Jake's MRI was. He was calling back to tell us that he will be over in the evening to Children's to read the scans and then call us Monday night. "I am not expecting to see anything on the scans, so don't worry too much about it," he said. He also said he doesn't think Jake's tiredness and fever is from radiation syndrome as not much of his brain was actually radiated. He said it must have been a bug. We are so blessed to have doctors like that - call us on Sunday when he didn't even have to. Thanks, Dr. Raman!

So just playing the catch up game once again. Jake's MRI is tomorrow at 10:00 - provided he's feeling better. They won't put him in the MRI machine if he is nauseated. He did just have a little peanut butter and jelly sandwich and is sitting up now, so maybe things are looking up. We won't have results until Monday night at the earliest. I will post them as soon as I can. Please check out the links I have below of other kids' sites adn sign their guestbook when you are there - everyone loves to get mail - even from strangers!! Make it a great day. Give Blood. Give hugs. Love, Kellie :~)

Thursday, August 7, 2003 4:56 PM CDT

Hey, Everyone! We are here in room 614 at Children's. We made it! Whoohoo! We are well underway with this chemo (#9/14), and will be here until discharge on Saturday night.

Jake's fever was much better yesterday and today his temp was an even 99 when we got here. Steve and I have been a nervous wreck about the fever and this sudden sleepiness of Jacob's. Of course we are thinking, "Is the tumor coming back? Is that's what's the cause of this low grade fever with no cold-like symptoms and his fatigue?" We felt better that the fever seemed less consistent by yesterday morning, but then when we were in the clinic today, Jake was not himself. He was tired, not eating, not wanting to play and irritable. We were worried again, "Should we do chemo today? Will it wear him down if he is coming down with something?" (Worrying is the top prerequisite for this parent of a cancer kid job). Then the nurse came to take Jake over from the playroom to our room here in the 6th floor and said she thought Jake might have what's called Somnolence Syndrome. This is basically a side-effect from cranial radiation. The symptoms are extreme sleepiness (up to 20 hours a day), low grade fever, headaches, nausea etc. He could also have a virus or just be worn down from everything. Who knows.

Jake's counts were good - ANC=1550. So glad to have this one going - next time we will be in double digits and then it will really seem like we are making progress!

Jake has a follow-up MRI scheduled for Monday at 10:00 am. We are checking to make sure the changes they saw on the last MRI are indeed just effects from radiation and not new tumor growth.

Hope you all have a great weekend! Thanks to Kathy Juma for watching Brandon tomorrow and Monday when we thought we were going in for chemo!! He LOVES being at Kathy's house! Thanks too to the St. Andrew's Methodist Breaking Bread group for the Wednesday night meals - what a treat Wednesday's are and it's so nice meeting all of you! Thanks for checking on Jake and signing the guestbook - we love reading it! Make it a great weekend! Love, Kellie :~)

Monday, August 4, 2003 1:50 PM CDT

Lesson 1: Never make plans with someone that has a child in treatment for cancer.

Lesson 2: If you have a child in treatment for cancer, never make plans.

Well, we went to the clinic today and now we are home. Jake has been running a low grade (99-100) fever since Friday night. No other symptoms. The boy feels great, just this annoying fever that won't go away. So we went into the clinic today and they accessed his port, took blood cultures and checked his counts. His counts are good (ANC=1880, Hemaglobin=10.4, Platelets=319), but they want to see the cultures just to make sure he is not fighting something bacterial in his port or elsewhere before they give him chemo. The cultures take 24-48 hours to show something. So we will go back on Thursday morning to try and get in for #9 chemo again (9/14). Our good friends, Josh and Liz Larson were there also trying to get in for chemo, but his counts were too low. So I guess the good news is that we will be back there with them on Thursday and the boys can play and Liz and I can talk. Liz and I knew each other before all this started because we both sell Premier Designs Jewelry. Her son was diagnosed in November and us in February - what are the chances? So now Liz and I meet up in the clinic for chat sessions. She is a great commrade in this whole thing to have, although I wish neither of us were there. Hopefully Jake's fever will be done with in a couple of days and nothing will grow in those cultures and we can get #9 under our belt.

Since Jacob felt great, we went ahead with his water party on Saturday and what a great time it was! Of course Steve and I were both soaked by the time the party was over. In fact, hitting Steve with water balloons and soaking him with buckets of water became part of the relay games we played. What a great dad! The weather was great - warm, but not too hot. Jake never showed any evidence of being tired - amazing how that kid can just keep going and going despite all that he's been through.

So now we will unpack the car, cancel the babysitters for Brandon, call everyone to tell them they won't find us in the hospital tonight, bow out of the meeting I had scheduled with other jewelery gals Thursday morning, reschedule the garage sale we had planned for this Saturday and then line it all back up for Thursday's admit! This is definitely a "go with the flow" situation. Oh well, three more days of Jake feeling his best and three more days of summer to enjoy before school starts next Wednesday (the 13th). We'll take it! Jake is so excited for school to start. He wants to be in first grade soooo badly! We'll have to hit the zoo and fill up some more of those water balloons in the next couple of days.

If you ever have an old Ninetendo or Playstation or the like that has been replaced by a more updated system and it's just laying around your house, Children's Hospital would love to have them!!!! Make it a great day and thanks for checking on Jacob! Love, Kellie :~)

Friday, August 1, 2003 11:05 AM CDT

Hey, Everyone! As you can see thanks to our Favorite and Awesome webmaster - Uncle Jeff (Steve's brother) - we have new pics on the site today!!!! The one here on the front page is from Camp CoHoLo - Jake's coming out of the pool at the end of the waterslide there. You can see his port right there on his chest - it's that little button protruding from under his skin. That is where the needle goes in for his chemo.

Jake is feeling great! he and Brandon are making a town with Lincoln Logs right now and, of course, complaining we don't have enough. They went with Grandpa Gary and Uncle Jeff yesterday to see Spy Kids 3D - they loved it! We went to see Dr. Raman (radiation oncologist) yesterday also for his 1 month check after radiation. He thought everything looked good. He saw no deficits and said we should test Jacob's hearing in January. We always love going to see Dr. Raman - he's so fun and nice. He is filing an appeal on our behalf to our insurance company. Please say prayers for him that his wife's papers will soon be approved by the INS and she can join he and his two kids (2 and 5) here in Omaha very soon. She is a physician stuck in Chicago right now where they used to live and is waiting for her papers to be able to move. It has been a year and a half so far and could take 3 years! Let's hope not. Dr. Raman didn't seem too worried about Jake's previous MRI - he feels confident any changes seen were slight and due to radiation. Loved hearing that!!!

Jake and Brandon are having a few friends from school over on Saturday for a water fun party. Ever since Jake missed his water fun day at school last year, we have promised him that we would have one. Now that his ear is healed, we thought we better do it before school starts on the 13th! Steve and I better put on our suits too - I'm sure a water balloon or two will come our way. Then Sunday we are heading to Lincoln to celebrate my Grandma Helen's 89th birthday! She is an amazing woman - still lives by herself and is active in social and church groups. She looks like she's 60 - I hope I have her skin!!!

Brandon just changed his outfit for the second time today - he is so into his clothes. He is very fashion forward - he thinks the top has to be the same color as the shorts - always the makings of a good look as you can imagine! He has gotten so big the past couple of months - very stocky; just like Steve. He can't wait for preschool to start and is so excited to see the kids again and be in the 4 year old class!

Hope you all have a great weekend! We know we will! We'll be admitted on Monday for #9 (9/14)chemo. This is the Vincristine, Adrimiacin (Doxarubicin) and Cytoxin round. We should be discharged on Wednesday night. Come see us Tues or Wed - it gets pretty lonely there during the day especially! Thanks for checking on Jacob!!! Love, Kellie :~)

Tuesday, July 29, 2003 7:59 AM CDT

Hey, Everyone! Thanks so much for checking on Jacob and thanks to those that have signed the guestbook. We check the site a couple of times a day and love to get messages!

We went in for counts yesterday and Jake's counts are all up. His ANC was 12800 and WBC were almost 15000. Platelets were good and his hemaglobin had come up to 10.9. So all looks good and we stoppped the shots. We should be on tap for his admission for chemo #9 next Monday. I was looking ahead scheduling some things for October and November and seeing chemo #13 and #14 around dates I was putting down and got so excited that we are getting so much closer to being done. I well up with tears everytime I see those higher numbers inching closer. It brings on a whole new set of emotions and fears. But I shouldn't get ahead of myself either as we have another MRI in a couple of weeks that will determine if those are ending numbers or not.

Jacob has been feeling great. I'm sorry, I should call him Jake. Ever since he got home from camp, he wants to be called Jake. I guess it is a much cooler name in the whole realm of his universe. JAKE is feeling great. His ear is completely healed - not even a sign or scar of the battle that took place there. His limping is mild this go-around and his spirits are high. He really seems to be rebounded from the toll that radiation took on his body and his counts. We are back in the groove and the routine of this treatment. I know that could change at any moment, but it feels good right now. Of course we went to Valentino's last night for "High Count Monday." We know the people up there so well now; I will have to send them a Christmas card come December!

Even with all this craziness seeming so routine now, sometimes the realization of Jake's cancer and the gravity of his situation takes me so off guard. The other day he was walking into the Quick Shop with Steve while I waited in the car with a sleeping Brandon. Seeing him walk in there with that bald head and obviously altered gait, I had to catch my breath with the thought that one of my sons actually had cancer. It's the weirdest feeling because it all seems so normal to me most of the time, but in that situation when I was looking at him as a stranger would from their car, it's utter panic and dismay when I see that's MY son with cancer. When you see those kids on TV or in passing, it seems so impossible that you would ever walk in those shoes. It's so rare for anyone to walk in those shoes and yet here we are.

It makes me think of a young girl at the University of Iowa Hospital we met named Tara. At the time, we didn't know what the tumor was in Jake's head - we were so consumed with getting it out before it killed him and the risks involved with that. But in the back of our minds we wanted it to be anything but cancer. One of the first questions I asked when they took us to our room up there the night before Jake's Embolization was, "What kind of floor is this?" The nurse replied, "This side is neurosurgery and the other side is oncology." To Steve and I that question was very important because we thought that each doctor had a feeling whether it was cancer and where they admitted us to might give us an insight into their thinking. So we felt good being on the "nuerosurgery" side. It tells you how much in despair we were at the time when your son being on the "nuerosurgery" floor was comforting. When we went to the playroom shared by the whole floor, there was a girl in there named Tara. She had cancer. She was bald, not feeling well and had obviously been on that floor for days on end. When Steve and I saw her, we were mortified because we were teetering on the edge of having a child just like her. She was a reminder of the disease that loomed in our shadows and threatened our son. In our effort to distance ourselves from that disease, we distanced ourselves from her and her family. I feel so bad about it now. It probably wasn't anything they noticed on the outside, but being around that sweet little girl that was fighting so hard made Steve and I's hearts rip apart. We couldn't talk to her parents as we usually do with people in the hospital, we had trouble looking at her or even wanting to be in the playroom when she was there. We were scared to death and it's amazing how fear makes you behave in ways that are not the norm. I feel bad about how we avoided contact with her and her family and the memories of her never leave my mind. Now we have such a kinship with other oncology kids and families. We pour over website after website of kids we don't know, crying when they die or relapse and giving a "whoohoo" when scans are clear. I wonder many times how Tara and her family are doing and wish I could have met her in different circumstances. Now Jake is Tara and we are her family and there are those that keep us at arms length as well. Most people are so kind and talk to Jake like they don't even see his bald head or his 10 inch scar arching over the whole side of his head. Most of our friends call us like they did before, invite us to go out and treat us like good friend should. Plus there are the strangers that have become our friends that do so much for us all the time. It's incredible to me sometimes how generous and loving people are. I wish I could go back to Iowa City, find Tara and her family and give some of it to them. Lessons learned in the worst situations are life's greatest gifts.

Please check the links of the kids we have at the bottom and pray for them along with all the other kids out there fighting the battle against this disease. If Jake's story makes you want to go out and do something, find it and do it. Giving blood is one of the best things you can do. These kids need so many transfusions of blood and platlets - some on a weekly basis. Or have your office or social group raise money for Children's, Camp CoHoLo, Make-A-Wish, Caringbridge or another great organization. Volunteer up at Children's to just go up and play games with the kids - Jake LOVES it when a volunteer comes in to play a game with him - SOOOO much better than when mom or dad play. Don't wait to be mobilized by your own tragedy to get involved like Steve and I are guilty of.

Enough of being heavy, the boys are planning a great outing with Kristin, our babysitter today to go see a movie and to McDonald's I'm sure. They love getting away from Mommy for a while - Freedom!!! Hope you all have a great day! Love, Kellie :~)
P.S. New picture to be posted in the next couple of days of Jake at camp!!!

Wednesday, July 23, 2003 6:45 PM CDT

UPDATE - SUNDAY 7-27 - 10:20 A.M.
Jacob appeared in the Lincoln Journal Start this morning!!! It's a great article that seems to capture his personality. To view it, click on the link at the bottom of this page. You can also go to journalstar.com and scroll down to the Local section. It's under an article titled "Where Kids Can Simply Be Kids." It's a story about his camp and his antics there! Enjoy!

Hey, Everyone! Well, all is right with the world - our Jakieboy is home! Sunday and Monday without him here were very hard on Steve and I. The hardest thing was that we couldn't even talk to him while he was gone, so the thought of "this is what life would be like if we lost Jake" gnawed at us constantly. It was hard being so cut-off from him like that. We both found ourselves revisiting the outcomes and prognosis of this whole crazy thing for some reason. So then on Tuesday, to get our minds off of things, I had an endoscopy done. Nothing like a little sedation and having a camera and long tube stuck down your throat to distract you! Just checking up on a longstanding problem of mine with reflux and making sure that's all it really was. And everything looks good, so minds are more at ease and it really did make Tuesday go faster. I slept off the remainder of the afternoon and then once I woke up, Steve started his hourly countdown of how much longer it would be that we would see Jake. On the way there this morning, Steve and I were giddy and almost nervous with excitement. We found Jake outside his cabin and he ran up and gave us a big hug. The counselors and nurses said that Jake had a great time and was a good boy. You could see it in every fiber of his being what a great time he had. I don't think he thought of home or his parents once and that is just fine. He was such a happy boy as he told us all the camp stories. The first thing he said to Steve and I was, "I'm coming back to this camp next year!" He even said he wanted to be a camp counselor when he grows up - I want that too, Jake!

A huge thank-you to Anisa Hoie (nurse from the oncology clinic that runs Camp CoHoLo) and Christy Hogan(the Child Life Specialist of the Oncology Clinic at Children's and Camp Counselor) and all the other great counselors and organizers who gave Jacob a very special 3 days of just being a kid. Anisa and Christy are amazing women. They work with oncology kids with all their heart, feeling every bit of the sadness when things go wrong and celebrating the successes with as much zeal as us parents do. I don't know what we would do without their guidance and friendship. Truely angels on earth!

So today, having Jacob home has been great. Brandon seems happier now, and even their bickering has been music to my ears. Jake came home and took a bath and then played with his Leggos for a while. It was about 12:30 and I thought he would want to lie down and maybe take a nap. As I was rubbing his back, he says to me, "Mom, are my counts high?" I said that I thought they were. So he says, "Good, then let's go to the zoo!" As he and Brandon were pleading with me, "Mom, please can we go, please," I realized I had no good reason to say no. We had nothing planned, no place to be and the weather was even beckoning us with an unseasonably mild 80 degree day. So we went to the zoo. As I was driving down there, I thought how good it felt to have TWO carseats once again filled in the backseat and TWO little voices singing "Air Force One" in their off-tempo style!

We had a great time at the zoo and then when we got home, reality came a-knockin' in the form of an insurance representative that called to tell us that they are not paying for Jacob's radiation at the Med Center because the type of radiation he got is considered "investigational." Funny, because that's what they called the Embolization he had done in Iowa City also. I told the gal I thought it incredibly frustrating how the procedures they call "investigational" are the very procedures that have saved his life. She said she understood my frustration. I asked her if she had a child with a life-threatening illness and she said she didn't. So I told her that she needs to stop saying that to people she deals with, because she has no idea how hard it is to fight for your child's life and a lame insurance company at the same time. Oh well, it worked out before, it will work out again. The amount in question is in the tens of thousands, so looks like we will be fighting over this one for a while.

But who cares? We are all together as a family again and Jake is doing great. We don't care how much it costs to get him healthy again. Nothing else really matters.

What's next? Back to the clinic tomorrow for counts and then probably around home here this weekend as he may be on the low side with his ANC. We have our next chemo (#9 of 14) on Aug 4th.

Thanks for checking in on Jake and make it a great day! Make the time to give some blood if it's been a while! Love, Kellie :~)

Sunday, July 20, 2003 2:35 PM CDT

Hi, Everyone!!! Thanks for all the great notes, calls and e-mails after our scare on Monday. It certainly blindsided us, but we are glad it's over and hopefully all will be clear on the next MRI in a month. Thanks so much to Dr. Abromowitch, Dr. Raman, Anisa and Dr. Hellbusch for working so hard to make sure Jacob was ok and for caring so much about him. We are so blessed to have these doctors and nurses on Jacob's team. After we all calmed down, we settled into our room at Children's, and Jacob did great this stay. He threw up once, but did well otherwise. They did start a steroid to help clear the swelling in his head from the radiation. As of yet, it hasn't made him too hyper. He has had many long bouts of crying, though, so his emotions have been thrown for a little loop. We got home from the hospital Saturday around 12:30. Thanks to the Larson's for bringing up the Playstation, to Penny for lunch, to Grandad Loren for letting the boys draw all over his tummy to fend off the boredom one night, to Amy Groff for riding out with me to Kearney for my friend's mom's funeral on Friday, to Kathy Juma, Nana, and Grandpa Gary for watching Brandon and for those that came to visit! You guys are the best!

I wish for those of you that have never met Jacob, I could put a video tape of him and his personality on here. He's like the guy that walks into a crowded party and he's got a strut going, waving at this person and that, making his rounds to everyone in the room. He is like a great salesman, so socially aware of everything going on, looking at the next angle in the road and knowing how to tap into people to make them follow his lead, feel good and have some fun. I wish I had the words to describe it. He talks like he is a very confident 10 year old. Not so much on an acedemic level, but in his social awareness and personality. Anyway, just to give you an example: On Tuesday Rob, the awesome Childlife Specialist on the 6th floor of Children's, and Janet, the great Art Therapist there, came into his room and asked what he wanted to do for his art project that day. Jacob replies, "Robbie, how tall are you?" Rob, a little confused, tells him he is around 6 feet. Jake says, "Ok, 6 feet. Janet, I need a 6 foot long piece of paper. Then I need markers and some cardboard. We are going to make a life size picture of Robbie today! We'll draw it on the paper and then glue the cardboard on so we can stand him up!" My friend Jen was in there and she asked Rob and Janet if they had every had a request like that before. "Nothing Jake says or does is anything we have heard before," said Rob. What a hoot that kid is!

We took that kid to camp today. Steve wore his camo shorts to tease the nurses that he was going to be hiding in the bushes the whole time! Jacob was very excited to go. He took his "Holes" movie soundtrack CD so he could sing it for everyone at the dance they are planning. He loves to rap and has the side to side head thing going when he does it! As we were checking in all his medicine, he whispered to me with such longing, "I wish at least at camp I could be medicine free." I told him next year when he came he would be. We got to his cabin and he immediately picked out a top bunk that had a "great view" as he told us. About 70 kids are attending camp the next three days. He was the only one in his cabin with a bald head - most of the kids are survivors and beyond treatment as are a lot of the counselors. It's very comforting to see that many survivors in a big group like that. It's called Camp CoHoLo and if you are looking for a great charity to support, it's a safe bet. We will pick him up Wednesday morning. I know he will have a great time and the nurses will take great care of him and get all his meds in. He wasn't upset at all when we left and either were Steve or I, but it's so weird not having him here now. I am really wondering what he is doing, how he will handle the shot without us, if he's getting too hot, does his tummy hurt, etc.... We went out for lunch with Brandon, and Steve voiced exactly what I was thinking, "This is what it would feel like to not have Jake." So weird, so incomplete.

So we will just keep REALLY busy the next couple of days. We are going to try and attempt a garage sale the first weekend of August, so we can work on that. Please continue prayers for teenager Stephanie. She got through brain surgery great, but has a long road ahead of her, coming up with a new plan to keep her cancer at bay. This is one girl who is truely deserving of a miracle!

Make it a great day and we'll keep you posted.... Kellie :~)

Monday - 3:33 p.m. - UGHHHHH!!!! IS IT WEDNESDAY YET?!??????!??????!???

Monday night - 8:15 - Brandon says out of the blue at Lowes, "Not having Jacob here is just dumb, Dad." No one around to crawl around the shelves with him - Mom and Dad are such a bore I'm sure! Wonder how our Jakie's doing....

Tuesday, July 15, 2003 10:49 AM CDT

UPDATE - THURS AFTERNOON (17th)- We got the results from the CT and the bone looks exactly the same as it did before and it is in "perfect" shape as report by Dr. Abromowitch. So we will repeat the MRI in a month to make sure the shadows on this last one done on Monday are gone and were just a result of the radiation. So I guess I will sleep good in another month or so! Ha! Jacob is doing well - extrememly bored, but having little nausea and is looking so forward to camp coming up this Sunday. We should get out sometime this Saturday. Prayers for Stephanie - a fellow oncology patient. She just graduated from high school and is on a phase one clinical trial and just had surgery to remove an unexpected brain tumor yesterday. She's a wonderful person and needs all the prayers we can muster. Thanks for checking on Jacob!!! Kellie

UPDATE - Tuesday Night, 10:54 p.m.
I just got home from the hospital with Brandon. There is nothing back from the CT scan today, mainly b/c the previous films never made it from the Med Center to Children's. We talked with the doc tonight and they said they are trying to coordinate things for tomorrow to get the scans and the Docs together. My feeling tonight is if this was really something to worry about, the scans would have been compared today for sure. When everyone was scared yesterday, things moved quickly. So I'm thinking, they really do feel it's radiation effects that they are seeing on the scans and not new tumor. Plus, I have heard from everyone at the hospital today that if Dr. Hellbusch (neurosurgeon) isn't overly concerned about it, we shouldn't be either. He is the man in the know, so I will hang my hat on that tonight and hopefully sleep better. I will try and update tomorrow if we hear anything on the CT scan for sure. Thanks for all the thoughts, prayers, notes on the guestbook and e-mails. Make it a great day! Love, Kellie

Hey, Everyone! Yesterday was a rough, rough day. I will write more about it later, but in a nutshell, they thought they saw something on the MRI that looked like new tumor growth. They called over the to the nurse on the floor and just said to hold Jacob's chemo and then they would be over to talk to me. It was a long, long two hours. I called Steve and told him to get up there. This was bad. If there is a reoccurrance of Jacob's tumor at this point, it would be very, very bad. Dr. Abromowitch, Dr. Raman (who had come over from the Med Center to look at the scan) and Anisa (nurse of the oncology clinic) came over after reviewing the scans and said they really feel like the changes in the MRI have to do with the swelling from radiation. They truely believe that's what it is otherwise we would be preparing for surgery and not going ahead with his chemo. We did a CT scan of his head this morning and they are going to review that and compare it to the one that they did right before radiation. So we should know a little more today. We will do another MRI in a month and see if the swelling looks better. They put him on a high dose of steroid (Demon Child will rear his ugly head again!) for a couple of weeks to get some of the swelling down to make a more definitive diagnosis. Dr. Hellbusch looked at the MRI also and feels that there is a change, but not an alarming one and we should just keep an eye on it.

Talk about being slapped in the face when you least expect it!!! We have been cruising along in this whole thing with amazingly few side effects and then within hours that all changes. If his tumor is coming back after only 3 weeks off of radiation and after 7 chemo's, we would be looking at a very decreased chance of survival. I really felt like I could have thrown up when the nurse said they had called over and said to withhold the chemo. I knew it could mean that Jacob had tumor back and he was dying. Both Steve and I feel better after talking with all of the doctors. It's so amazing how they all drop what they are doing and gather around to care for Jacob - no egos in the way of this amazing team of doctors and nurses. I was floored by all of their incredible concern for my boy. I could see it in their eyes how stressed out they had been intially and how relieved they were with their conclusion. I only hope that today's tests support those conclusions.

I will update more tonight. Jacob is feeling good and had a great weekend! His ANC on Monday had come all the way up over 2000! On the outside, he is doing faboulous. Prayers for the same going on inside his little head would be appreciated! Love, Kellie :~)

Thursday, July 10, 2003 4:59 PM CDT

Hey, Everyone! Thanks for checking on Jacob! He is doing GREAT! Just when I was getting down about how the stress was affecting him emotionally and in his behavior - he turned back into our Jacob in a matter of a couple of days! It has been so long since he has had a full dose of chemo - 7 weeks - that I think he just feels good and it shows. I am so happy to have these couple days with our happy boy as it gives me great hope for when he is done with treatment. Someone knew I needed that dose of hope and I feel good about Jacob being able to return to himself once he has all the chemicals are out of his body. Even his teacher on Wednesday said he did such a great job and worked and worked for her!

On Wednesday night, Grandpa Gary took to the boys to see "Rugrats go Wild" and they had a blast! Jacob spent this afternoon over at a buddy's house today - thanks, Sullivans - Jacob had a great time! Tomorrow we have more friends coming over and then tomorrow night Jacob's best buddy that moved to Maryland this past February will be coming over to visit! He is so excited to see Derek and so are we! Nothing much else planned for the weekend. Hopefully we will be able to go to church on Sunday - it has been so, so long!

Monday we will go into Children's at 6:30 am for Jacob's brain MRI. We might try and grab a little breakfast and then head up to the Oncology Clinic for admission for his 6 day chemo stay (#8 of 14). Thanks to Laurie - Child Life Specialist - and Patty - nurse in Radiology - for getting all ready for Jacob early Monday morning to try and make the whole port access in Radiology a little easier. I didn't even have to ask - they just set the whole thing up and e-mailed me that they had it all coordinated and were ready! How great is the Children's Hospital here?!?!!! THE BEST!

Prayers for my friend, Debi and her family - her mom could not recover from her anuerisms. Prayers for the kiddos with links here on the bottom of our webpage - they have a special place in our hearts. Prayers too for a little boy named Cameron that we met at the Med Center and is fighting Rhabdomyosarcoma - his parents got some bad news this week. As we know, though, statistics don't mean anything and thank God for that!!!

Have a great weekend! Love, Kellie :~)

Monday, July 7, 2003 3:59 PM CDT

Hello, Everybody - thanks for checking in on Jacob! We are all doing well here. The 4th of July was great. We had a small group here for dinner and then more came for fireworks later. It was hot, but with some sort of breeze and cloud cover, so it could have been worse. The fireworks were awesome and the boys were in 7th heaven. It was great watching all the fireworks around us too - unbelievable how many were going off all around us!

Jacob, Brandon and I headed to Children's this morning for Jacob's counts. His ANC was much higher - 1100, so we were very happy. Looks like we will be heading to Valentino's tonight for High Count Monday's Celebration. I wonder if there is such a thing as Valentino's Toxicity? I think I'm just about there if there is. Ha! We always get a warm welcome there, though, and I think Jacob loves that part of it more than anything!

We go in to Children's on Monday for a brain MRI and then up to the clinic for chemo admission. He woke up in the middle of the night Saturday, saying he needed to throw up, which he did. The brain MRI on Monday should eliminate any fears we have about something going on up there in his head. Hopefully it was just a case of tummy trouble. This coming admission will be for chemo #8 (out of 14) and is a 6 day stay - ugh - really starting to dread these.

Jacob's limping is much improved these last couple of days. He feels pretty good right now and the ear continues to heal, although it still bleeds a lot. I think he just can't keep his fingers out of the darn thing. He is really starting to show the wear of all this in his temperament. It has improved since radiation, but he is more clingy and short tempered than usual. His stamina for things has really waned also. He has trouble working on something for an extended amount of time, unless it's Leggos. I think he will struggle a bit in first grade, especially starting off the whole first semester with his hit and miss schedule. In the whole schema of things, though, it doesn't really matter to me anymore if he is at grade-level or above. I just want him to live and never have cancer again. I would love for him to be a happy little boy with little to worry about once again. Above and beyond that I really don't care. Funny how stuff that was so important before, now, just isn't. I hear what people complain about and worry about and I see how minor it all is when I read website after website of kids fighting for their lives every hour of everyday. Jacob's story so far in this whole thing has been mostly a happy one with little complications. This life we live now is so hard at times, but so much easier compared to others in this same fight. Man, I did it again. I was just going to make this a simple update without anything too deep or heavy and here I am. Ok, enough, I have laundry to do and undies to pick up off the floor - not mine mind you!

Make it a great day and we'll keep you updated! We appreciate all of your support and friendship! Love, Kellie :~)

Thursday, July 3, 2003 9:09 PM CDT

Hi, Everybody! The 4th of July is upon us, and Jacob and Brandon are about to bust with excitement! Dad and Boys got out the whole array tonight, set them up on a table outside and then discussed the order in which they would be presented. Of course, during the discussion, some of the items had to be plucked off the table and lit to make sure that things were in working order for tomorrow night. We will have family over for dinner and then the Beresh Firework Display will begin!

I was out taking pictures as the planning was taking place. Funny how important every picture taken of the boys seems now. Not so much because I fear their lives being short lived, but because I am trying to capture this moment in time in those photographs. I drive the boys crazy, posing and directing them, trying desperately to capture not only their faces, but the feelings and thoughts behind them. I don't want to forget about this year, I want to try and preserve the insecurities, appreciation, fear and wisdom we have at this moment. Someday when the boys or life dissappoint us, we can look back at these pictures and feel the basic thankfulness we have today for every breath they take; the pure joy with hearing their little breaths at night as we check on them one more time before we go to sleep. I never want to lose the lessons that we learn this year. I never want to forget when they were 4 and 6. This is not a year I want to wish away and forget forever. I want to hold on to this year as a precious reminder of how dear those we love are and how we should never take the time we have with them for granted. I need to remember so instead of saying, "In a minute," I can say "Here I am."

Jacob and I went in for counts today. His ANC has dipped to 330, but the nurse thought he was on his way up. He has lots of monos which will turn into nuetrophils in the next day or so, so his ANC should be climbing. His hemaglobin and platlets were goood. His ear looks a hundred times better. He took a shower last night without a complaint of it hurting and really cleaned 2 months worth of blood, puss and ointment off of it. His limping, unfortunately, has come back with a vengence this week. Even after stopping the nuepogen shots on Monday, his poor little feet are like carrying around bags of sand. Walking for long periods is a struggle - seems the Vincristine has really affected him this round. Hopefully as the days go, it will improve.

Hope you all have a wonderful holiday! It is HOT here in ole' Nebraska! 100 today! YUCK! Seems it will be a steamy 4th of July! Please say prayers for my friend Debi's mom who is fighting for her life with 3 brain anuerisms - she is 57.

Love, Kellie :~)

Monday, June 30, 2003 3:34 PM CDT

Hello, Everyone! Well, Jacob came out on top in the fundraising for the American Cancer Society's Relay for Life! Our total ended up being right around $6000!!!!! We won a trip to Kansas City with passes to Worlds of Fun, so Jacob was pretty psyched! Thanks so much to EVERYONE who contributed! The Relay was great! Jacob made his survivor lap with his buddy from the Oncology Clinic, Steven. We played and visited and ate and even did a little walking. Jacob's feet were pretty sore, so I had to carry him for the last part of the survivor lap. The night was beautiful - perfect weather! No extreme heat, no humidity! We stayed out there until 12:30! We were saying that people were probably thinking, "Look at those people over there, keeping their 6 year old chemo kid out here until 12:30!" But Jacob was having a great time! At around 10:30, he decided that Children's Hospital needed to benefit from a little fundraising. He set up shop right next to the track by the Children's Hospital sign and yelled, "money for Children's!" at the people walking by. He collected $52.10 and presented it to Children's Hospital today! That kid! Thanks to all that came out to root Jacob on!

Sunday Jacob woke up with dried blood everywhere! It was a pretty gruesome sight. Looked like he had scratched his ear during the night and with the paper-thin skin he has back there, it came right off. I was cleaning him up and it started bleeding again. I couldn't get it stopped and started to get really worried by the time it did. All day it would bleed and bleed and then have huge scabs on it. We had a birthday party for my step-mom here in the afternoon and then our cousins from Lubbock, TX - Diana and her daughter Hayley arrived later in the afternoon.

I really know how to show guests a good time - I took Diana and Hayley with us to the hospital today for Jacob's blood counts at Children's. Jacob's counts were good. We can stop the nuepogen shots as his ANC was 9000! His hemaglobin and platelets were good also. Dr. Abromowitch (pediatric oncologist) looked at Jacob's ear and had some concerns, so she called Dr. Raman (radiation oncologist). He said he wanted to see it, so after children's we drove down to the Med Center to see him. The fun never stops, huh? He cleaned it all up, said that it was ok and put him back on the steroid cream. It's a severe burn, so it will just take time to heal. Finally at 2:00, we went to lunch and now the boys are chilling out with a little Sponge Bob! Nothing like a guy in square pants to make a very sore ear feel better!

Jacob loved both the TV piece and the newspaper article! Both the journalist and the TV reporter and cameraman did such a great job! We got $1500 Friday- Sunday towards Jacob's total and it was definitely because of the coverage. Friday night we went to Valentino's (of course) for dinner and Jacob got really quiet and asked for his hat towards the end of the meal. He said kids were staring at him because of his bald head. It was the first time he felt the stares that befall us wherever we go. It was the first time he ever really felt conscious of his appearance and I could tell he was broken-hearted. I told him, "Jake, they aren't staring at you because you are bald. They are staring at you because you were in the paper and on TV today and they recognize you." He wasn't convinced and gave me that "your just saying that to make me feel better" look. He was quiet the rest of the time we ate, looking up sheepishly every now and then at the people around us with those big, brown, eyelash-less eyes. Jacob is rarely inhibited and it was hard for Steve and I to see him feeling so conscious of others. As we were leaving a lady came up to us from the other side of the restaurant and said to Jake, "Hey, are you a celebrity? Didn't I see you in the paper today?" His face lit up and he looked up at her and took off his hat and said, "Yep, that was me!" She said she thought so and that she would be a the Relay the next day also and would see him there. "See, " I said, "I told you that people recognized you from the paper! And you thought they were staring at you because of your bald head." His spirit lifted and he walked out to the car as happy as could be. I know that lady was put in our path by the special angels we have watching over us. Their timing is impecable! Grandmas don't have to be alive to be effective!

We will be enjoying Diana and Hayley's company until Thursday. We are so glad to have them up here. The boys are in seventh heaven with them here! Hopefully the weather will stay nice to give them further break from that Texas heat. Thanks for checking in on Jacob and thanks again for all the contributions for Relay for Life! Make it a great day! Love, Kellie :~)

Friday, June 27, 2003 9:30 AM CDT

*Tonight at 5:00 is Jake's story on channel 7 (ABC)!

Hey Everyone!!! Thanks for checking in on Jacob!!!

Since Jacob's story ran in the Omaha World Herald today (it's on the front page of today's Living section), we have gotten in another $650 in donations!!!! It's only 9:30 a.m.!!! So Jacob's total now in the money he's raised for the American Cancer Society's Relay for Life is $5150.00!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I can't believe it! Steve said last weekend he really wanted to hit $5000 - I told him there was no way in a week that we could raise another $1000, but I was wrong and I'm so happy about it!

We can still take donations even once the Relay is over, so if you didn't get a chance to donate, feel free! Thank you so, so much to everyone who has donated!

Jacob's story on Channel 7 (ABC) should be airing tonight, but I'm not certain on times or that it will be tonight. Just watch the newscasts tonight and see - Margaret Beauman is the reporter that did the story. If I do find out a definite time, I will put it on here.

We head back down to the Med Center today to get Jake's ear checked out by our Radiation Oncologist, Dr. Raman. It is looking better - thank goodness! I have been worried at times. But everyday there is improvement, although it is still pretty darn gross. At least the worst of it is behind his ear.

The boys are doing great and are really excited for the Relay tomorrow. Come cheer Jacob on and have some fun too. Kids' activities run from 5-8 and the survivor's lap is at 6. It's at Millard West High School.

Thanks again to everyone who has donated. Thanks to St. Andrew's Methodist's Breaking Break group for all the great Wednesday meals - we look so forward to Wednesdays. It helps so much - thank you guys! Have a great weekend! Love, Kellie

Thursday, June 26, 2003 8:06 AM CDT

JACOB'S TOTAL IN THE RELAY FOR LIFE = $4500!!!!! WE CAN STILL TAKE DONATIONS EVEN AFTER THIS SATURDAY'S RELAY. PLEASE SEND IN YOUR DONATION IF YOU HAVEN'T ALREADY! THANK YOU SO, SO MUCH TO EVERYONE WHO DONATED!!!
YOU DEFINITELY MADE JACOB ONE HAPPY LITTLE BOY!!!!WE WILL COUNT ON YOUR SUPPORT NEXT YEAR!!!

Hey, Everybody! Just wanted to put in a quick note today because Jacob's newspaper article is supposed to be in the Omaha World Herald tomorrow (Friday) on the front page of the Living Section! If you don't get the World Herald or live out of Omaha, you can find it online at www.Omaha.com.

We also got a call on Tuesday that Channel 7 (ABC) wanted to do a story on Jacob and his disease and how much money has been raised. So Margaret Beauman (sp?) and a camera man came out here yesterday. Jacob was in rare form during his interview, talking up a storm and giving them an earful. Sometimes you'd think you were listening to a commercial for Children's Hospital! He was so funny. The camera man said it was hard for him to keep a steady shot at times because Jacob had him laughing. It was a lot of fun. It's supposed to air Friday on channel 7 - not set in stone on the times, but I will put it on here as soon as I know.

Jacob's ear is looking slightly better. Still oozing and bleeding a lot from the sores in and around his ear, but it does look better. He is feeling great. We let off some fireworks last night. It'so awesome watching the boys and how excited they are about the whole firework thing. Being at the hospital so much has really made us appreciate the nights we have to just be outside with the boys, watching them play.

Saturday is the Relay for Life - all are welcome to come and cheer Jacob on! The Survivor's Lap starts at 6. There are kids' activities from 5-8 and it will be so much fun. Please come out and help out the American Cancer Society! We should find out that night who raised the most money and if Jacob comes out on top!

The weather here is FANTASTIC!!! Bye, bye heat and humidity and hello 75 degrees!!! I am not a heat gal AT ALL, so I love this unseasonably cool weather! Plus I don't have to hear Jacob and Brandon beggin to get out the pool - still holding off on the sun as much as possible! My cousin Diana and her daughter Hayley are making a second attempt to come see us this weekend! It will be great having them here and I've got a lot of appointments scheduled while they are here to help! Like an appointment to give blood on Tuesday - make one of those appointments yourself - PLEASE!!! If you are pregnant, please consider donating your baby's cord blood and please consider registering with the National Bone Marrow Registry yourself!!! It saves so many lives!! Thanks and have a great weekend. Go Jakie on the Relay!!!

Love, Kellie :~)

Tuesday, June 24, 2003 8:40 AM CDT

JACOB'S TOTAL FOR HIS RELAY FOR LIFE FUNDRAISER= $4156.72!!!!! THIS IS THE LAST WEEK TO DONATE - WE ARE TURNING IN THE MONEY ON FRIDAY!!!
THANK YOU SO MUCH TO EVERYONE WHO HAS DONATED!!!!! THE RELAY IS THIS WEEKEND AT MILLARD WEST - COME AND CHEER JAKIEBOY ON!

Hey Everyone! Jacob was discharged from the hospital this afternoon from his chemo. We are now halfway done with his chemotherapy!!!! What a milestone this seems like. Having radiation and 7 chemos behind us feels so good. I can't believe we are at this point - it really seemed like an impossibility when we first started. The road just seemed so dark and steep. One step at a time, without looking too far ahead, enjoying the journey as we go and here we are - halfway done!!! He made it in yesterday with an ANC of 980. His hemaglobin=11.4 and platlets were 320. So all looked good. He got his chemos last night and was in overnight for hydration. He is feeling well, although Steve said he had a restless night. We are loving this one night stay thing - wow! We got out one Leggo thing and left the rest of the toys in the car. We shouldn't get used to it, though, three week from yesterday we will be in for our 6-day stay. We will start the Nuepogen shots tonight. I guess we are halfway done with shots too!

Jacob had a great weekend. We played outside a lot and he had a birthday party on Sunday. He loved that. It makes me so happy when his classmates and buddies remember to invite him to their birthday parties! He and I were on KFAB (local radio station) on Saturday for about 45 minutes. We talked about Jacob's disease and the money we have raised for the Relay.

Jacob's ear is healing slowly. The burn on his head is so much better, but his ear is taking it's time. It still bleeds and is very sore - especially the sore at the top of his ear. We are all a very happy bunch not having to go to radiation that's for sure. Hopefully his ear will show some great signs of improvement this week! We put a steroid and Silverdene on it two times a day each.

Brandon is doing great and feeling great. I can't say enough how much we love those ear tubies! Steve and I are getting excited for the Relay this weekend - we are so appreciative for everyone's donations. How awesome the response has been! Thank you, thank you!

Have a great day and we will update again soon! Love, Kellie :~)

Friday, June 20, 2003 8:16 AM CDT

JACOB'S TOTAL SO FAR FOR THE RELAY FOR LIFE FUNDRAISER BENEFITTING THE AMERICAN CANCER SOCIETY = $3872.00!!!!!
KEEP SENDING IN DONATIONS. A special thank you to the Mainelli Fitters at the Durham Science Center for their donation of $150!! THANK YOU TO ALL WHO HAVE DONATED!!!! HELP US GET TO $4000!

Hi, Everyone! Thanks for checking on Jacob! We are officially done with radiation!!!! I hope Jacob never has to have that again in his lifetime. He is so badly burnt! His sores on his ear have been oozing a little green stuff the past couple of days. We saw the radiation oncologist yesterday and he wants to take another look at it next week and said we just have to keep a close eye on it and on him. We are so happy to be done! We had balloons and presents for him yesterday when he came out and Uncle Jeff came and took some pictures. Jacob got to bring home his mask and he used it to carry his snacks that he got at the vending machine out of the hospital yesterday! I waited for my "woohoo" until we said goodbye to Dad and got in the car. Jacob and I rolled down our windows and screamed "woohoo" at the top of our lungs! Jacob seemed more like his old self last night. I'm sure he will be a happier boy now that we are done with this phase of treatment.

Yesterday morning the Omaha World Herald came out here with a reporter, a photographer and two representatives from the American Cancer Society. They took a couple quick pictures and then asked about Jacob's story and how we raised the money for the Relay for Life. They were all very nice and hopefully the article will be in the paper next week. The reporter asked me how Jacob feels about all of his treatment and does it seem to bother him. I told her it's hard to tell b/c he usually doesn't complain about pain or being sick, although I thought the last couple weeks of radiation had broken his spirit some. But as we were talking I remembered the activity we did a week ago at Candlelighters. The Rose Theater is doing a play about childhood cancer in the Fall. They asked the families of Candlelighters to make art that they will have on display in the hall at the theater. They had some face forms that each of us decorated. When Jacob was finished we asked him what he named the piece and to explain it. He said it was his face and that he had given himself hair. It's name was "The Face of Misery". At the time, I was so taken with Jacob using the word "misery" that I didn't even think about what it meant. But when we were talking about it with the reporter yesterday, I realized that that's really how he feels about this whole thing. It is really hard on him. Having cancer and being in treatment is misery to him. I didn't think about it that night, because I really didn't want to. I don't want my boy to feel this misery. No child should ever have to.

But as I write this, Jacob is in the other room, laughing and playing with his buddy, Justin. Just plugging along through each phase, making the most of it!

Last night we had a few friends over for ice cream and fireworks to celebrate being done with radiation. At about 4:30, Jacob started running a fever. He was in a panic that we wouldn't still have his party. Steve and I were in a panic that we would have to go to the hospital. The wound in his ear had been putting out some green goo all day - was he getting an infection? I went and packed the bag, Steve checked Jacob's temp every 5 minutes and Jacob fretted that we were going to call off the ice cream and fireworks. If it gets to 100.5, we have to call the doctor and probably go in to the hospital. Well, he got close - 100.1, then 100.3, 100.4, but we avoided the magic number and got to stay home. We set the clock and checked his fever through the night and he was back to a nice 98.6 by 3 a.m. Thank Goodness!!!

What's next? We will go back in on Monday and try for admission again. Not sure if it will be a 1 or 2 night stay. I will call today and see if they have determined that yet or not. That would be chemo #7 out of 14. Let's think higher ANC!!! I will have Jacob keep repeating it - thanks, Shannon, for that suggestion!

Hope you all have a great weekend and get those donations in ASAP! Go give some blood and make it a great weekend!!
Love, Kellie :~)

Tuesday, June 17, 2003 8:38 AM CDT

***Afternoon Update: Jacob couldn't get in for chemo today as his ANC was only 550! We were pretty dissappointed at first, but Dr. Abromowitch and the nurses just think with all Jacob has been through with chemo and radiation simultaneously, his little body is just saying, "Give me a break!" So we will. We have the whole week off and we will try again for admission on Monday. Please pray for higher counts on Monday - they have to be at 750 to get chemo. We hung around up at the clinic for a while as they were expecting the Rice Baseball Team to come up (they are in town for the College World Series). Jacob and Brandon had a ball getting autographs and playing games with the great kids from Rice for about an hour and a half. It was so fun and I think I just might be a Rice fan now - they beat Texas last night - who wouldn't love a team that beat the Longhorns? So we are a week behind on our protocol now, but Jacob does need a weekend to rest and heal. And all of us could use a weekend just to hang out and have some fun. Read on for this morning's update!

JACOB'S TOTAL SO FAR IN THE RELAY FOR LIFE FUNDRAISER=$3387!!! A SPECIAL THANK YOU TO THE TINNERS AT THE WALDINGER CORP. SHOP WHO DONATED $80! ALSO A SPECIAL THANK YOU TO STEVE'S GRANDMA FERN WHO TURNED IN 3000 PENNIES THAT SHE HAD BEEN SAVING FOR THE LAST 10 YEARS! THIS IS THE LAST WEEK TO DONATE!

Hey, Everyone! Jacob had a great weeekend. He went to Hannah Fry's birthday party on Saturday and had a great time. We had a cookout with a few fireworks on Sunday night. We got a new patio poured under our deck finally this week, and it is so great for Jacob having shady spot to play down there now!

Jacob and Steve just left this morning for his 26th radiation treatment. After today we will have 2 left! Jacob's head is burnt and his ear has a new sore on it, but the two day break (Sat and Sun) really helped. It hurts Jacob too much to take a shower now, so we have resorted to doing baths and then we sprinkle water over his head to clean his ear with a watering can. It's like watering a Chia Pet! I told him since he doesn't have any hair, we would try growing some plants up there instead! He wasn't going for that. Last night I told him when we walk out of that door after his last radiation on Thursday, I am going to jump up and down, dance and shout whoohooo. "Oh, Mom, don't do that; you will embarrass me," was Jacob's reply! I think I will risk it! After today, 2MORE LEFT!

Brandon and I are meeting Jacob and Steve up at Children's later this morning as Jacob will be admitted today for his 7th (out of 14) chemo! That will mark the halfway point! This will be just an overnight stay because one of the chemos he usually gets with this round (adriamycin) can't be given during radiation. His protocol has two odd numbered rounds in it that don't include this particular chemo, so he won't be missing anything. He will do just an overnight stay again on #13. I can't believe we are halfway done. I can't believe we have gone this far without a fever and subsequent hospitalization in between Jacob's chemos. I'm sure a lot of it has to do with all the support and prayers - thank you guys for that!

The Omaha World Herald will be out here on Thursday with a reporter and photographer to do a story on Jacob and our family and how much money we have raised for the Relay for Life. I hope it makes it into the paper - Jacob would be thrilled to see his picture in the paper! I am still in such amazement over how much money has come in. We are so happy this fundraising drive was so successful - The American Cancer Society is an amazing organization and can't ever get enough donations as far as I'm concerned. There are so many unbelivably awesome organizations out there that give so much support to families with childhood cancer. We are so indebted to the American Cancer Society, Make-A-Wish of Nebraska and Children's Hospital. Steve and I want nothing more than to be able to support all of these organizations once this is all over. It's something I plan for and think about all the time - what to do, how to do it....any suggestions would be appreciated!

Anyway, we are doing well. Jacob is feeling great despite being badly burned and having cement feet (side effect from the chemo that will go away). He just keeps chugging along. Running and walking with the other kiddos really are an effort for him. It's so hard to judge how hard it is, how tired he is or how much he doesn't feel good because he just doesn't say or show it. I don't think it even registers with him - he doesn't even give his pain and fatigue the time of day. He is too busy having fun. It amazes and inspires me to watch him play. I know he must be hurting. He must be tired. But he just keeps on playing tag and riding his bike and hitting that baseball. Brandon whips him in a running race and yet he moves on and organizes the next one. When he was at that party on Saturday I stayed for a while and watched him. In that big group of kids his age, I could really see the toll all of this has taken on his little body. It's heartbreaking to me, but to Jacob it's heartbuilding. He just never stops long enough to feel the pain and fatigue. He just never stops. It's so awesome.

Hope you all have a great day. Try and stay cool in this heat that has hit Nebraska all of a sudden - and just when I was thinking we might have a cool 4th of July! What was I thinking?!? Make it a great day! Love, Kellie :~)

Thursday, June 12, 2003 3:28 PM CDT

JACOB'S TOTAL SO FAR IN HIS FUNDRAISER FOR THE RELAY FOR LIFE=$3250!!! WE ARE TAKING DONATIONS UNTIL JUNE 20TH - PLEASE TELL JACOB'S STORY AND ENCOURAGE FRIENDS AND RELATIVES TO DONATE!!! JACOB IS DEFINITELY IN THE RUNNING FOR TOP INDIVIDUAL FUNDRAISER - PLEASE HELP HIM GET THERE! HE WOULD BE SO EXCITED TO WIN!!! JUST E-MAIL US (SEE BOTTOM OF THIS PAGE) AND WE WILL GIVE YOU OUR ADDRESS! THANK YOU SO, SO MUCH TO THOSE THAT HAVE DONATED!

Hi! Jacob is holding up pretty well in approaching his last 5 days of radiation. This week has gone so slowly - his ear is still hanging on, but on both the lobe and at the top of his ear, he has open wounds and his skin is breaking down in several spots. His head is badly burned basically - I can't wait until this is over! 5 more times to go!!! His spirits have been better the last couple of days, as I really think he feels like there is an end to this phase of treatment. Steve and I will breathe a huge sigh of relief on the 19th (his last day) - another battle down in this fight!

We went into Children's this morning as well to check on Jacob's counts. Before we made our way to the lab, we were distracted by the Hershey's Kissmobile being parked in the front drive of the hospital. We got our picture taken with the Big Hershey's Kiss and then got a bandana, poster and of course, chocolate!!! Jacob's counts took an unexpected turn - his white blood cells that usually hold so steady spiraled down from 7000 on Monday to 1500 today. His ANC that was 5200 on Monday is now 760. My heart kind of dropped hearing that as Jacob has always been able to hold a steady white blood cell count. Lets just hope it stays up for Tuesday as he is due for chemo(he has to have an ANC of 750 for that). His hemaglobin went up to 12.9 and his platelets came up to 143. Weird - truely a testiment that you can't predict or rely on anything on treatment. It's all a crap-shoot.

Between Children's and the Med Center today, Jacob and I went on a special lunch date to the Olive Garden. We had such a great time, laughing and talking the whole time. I don't know if all the stares were because of Jacob and his bald head or just because we were being so loud laughing. I know I will always remember today's lunch. Just Mom and Jake enjoing each other's company.

We are going to Candlelighter's (parents of cancer kids support group at Children's) tonight. Jacob is so excited - he loves "cancer club". I don't know what to do about weekend plans with his ANC being on the low side. It's hard trying to guess what will happen to them in the next couple of days. Prayers for them to go up and for him to be able to have chemo on Tuesday would be appreciated.

Hope you all have a great weekend!!! Make it a great one! Love, Kellie :~)

Tuesday, June 10, 2003 2:45 PM CDT

JACOB'S TOTAL SO FAR IN THE AMERICAN CANCER SOCIETY'S RELAY FOR LIFE= $3053.72!!!!!! THIS IS THE LAST WEEK TO DONATE - LET'S SEE HOW HIGH WE CAN GET IT!!! INVITE YOUR FAMILY AND FRIENDS TO DONATE FOR JACOB AND SEND THE CHECKS THIS WEEK!!!! A HUGE THANK YOU TO THOSE THAT HAVE DONATED!

Hi, Everyone! Jacob is so excited about his total for the Relay for Life. He could be in the running for highest individual fund-raising - he would bust for sure if that happened! Please tell Jacob's story to others and encourage them to donate!

Jacob is officially SICK of radiation. I am too. It's getting really hard now because his head and ear look terrible! His skin is breaking down on the back of his head and on and around his ear. It's all very red and there are sores in and around his ear. Where his ear meets his head, there is an open wound that oozes and bleeds every so often and is pretty sore. We have a steroid that we put on it 2 times a day and Silverdene that we put on his ear 2 times a day. Plus we try and keep it moist all the time with this mega-vasaline they gave us. It's not getting any better until radiation stops as he will get the highest dosage this week and next. It's hard to take him there everyday knowing it's just going to keep burning his skin. So we are just toughing it out these last two weeks and trying to keep Jacob's ear from falling off! Ha! Acutally we have 7 more treatments to go. Jacob is so bummed about going everyday and he is angrier and more crabby than ever! I bought him one of those blow-up punching bags and it's scarry sometimes how he goes after it! The radiation oncologist really wants him to stay inside all summer so his skin can heal, but obviously that would be pure torture on Jake. So we will just stay out of the sun for the next two weeks and then be vigilent about keeping him covered and in the shade after that. Which brings us to another reason Jacob is so mad - he wants to be outside in the sprinklers so bad he can hardly stand it. Sorry everyone, but I've really been hoping for cool temperatures and rain lately.

On the chemo side of things, Jacob and his counts are doing very well. His ANC on Monday was 5200 and his hemaglobin was 11.9. His platelets were on the way down, so we will go back in on Thursday to see if they have stabablized a bit. We have our 7th chemotherapy round next Tuesday. We will go in for radiation early and then over to Children's to be admitted. Since he can't get Adriamycin while on radiation, we will only get Vincristine and Cytoxan and then be in for hydration over night and be released Wednesday morning and head over to radiation. I love the name of that one chemo, Cytoxan. At least it tells it like it is; "Hey, I'm a toxic chemical, I know it and I'm not afraid to admit it!" Some of the others have cute names like Vincristine and Etoposide, but not that one, it just tells it like it is!

Went and did a little 4th of July firework shopping this weekend. Jacob and Brandon are so excited for the 4th. We are making it our "End of Radiation and Halfway Through Chemo" Party also. With luck, Jacob will not be in the hospital that week and his counts should be good. Jacob also has a birthday party this weekend to go to (thanks, Hannah Fry, for scheduling your party around Jacob's counts - you guys are the best!)

That's all for now. Thanks for checking in on Jacob! Make it a great day!
Love, Kellie :~)

Thursday, June 5, 2003 8:56 PM CDT

JACOB'S TOTAL FOR THE RELAY FOR LIFE BENEFITTING THE AMERICAN CANCER SOCIETY= $2978.72!!!!!!!
A SPECIAL THANKS TO THE FITTER AND PLUMBER UNIONS OF OMAHA WORKING AT THE DURHAM SCIENCE CENTER FOR THEIR DONATION TODAY!!! WE'RE ALMOST AT $3000 - DON'T STOP NOW! DONATIONS OF $10 OR MORE ARE TAX DEDUCTIBLE. E-MAIL US (SEE BOTTOM OF THIS PAGE) AND WE WILL SEND OUR ADDRESS. MAKE CHECKS PAYABLE TO THE AMERICAN CANCER SOCIETY! CANCER IS SOMETHING THAT AFFECTS ALL OF US - LETS DO WHAT WE CAN TO GET RID OF IT!!!!

Hey, Everyone! All is good here at the Beresh house. Jacob and I went to Children's this morning for his counts. Jacob's hemaglobin was over 11 and platelets were good. His ANC should have been on the low side, but it was over 1000! We're not sure if they have already dropped, if they haven't dropped yet or if they just won't drop at all. We'll just lay low this weekend to be on the safe side. Last chemo his ANC never really dropped either, so I don't know if his body is just adapting or what. Amazing because sometimes it can take 3-4 weeks for kids' ANC's to level up over 1000. We feel so for those that have that problem - what a struggle being cooped up in the house all the time! Unless you go through this yourself, it's hard to understand how the families of cancer patients live by the biweekly counts. We are at the beck and call of those numbers; our lives being led by the hand of our child. As it is whether that child is sick or not; just some times more than others.

Jacob loves it at the Oncology Clinic at Children's - it's become such a safe, fun and loving home for him. It's a amazing how the environment can make such a difference in Jacob's attitude towards treatment. He asked this morning in his "I'm so sick of this cancer gig" voice, "Mom, do we have radiation today?" I said that we did, but that we were going to Children's first for blood counts. His reply, "Children's first! Whoohooo!" Thanks to everyone who donated to Childrens Hospital this weekend for the Children's Miracle Network Telethon. Even if you don't have kids of your own, you do have a relative, friend, neighbor or coworker that does. Even if you don't need Children's Hospital now, you might someday and you will be so glad it's there!!! I know we are. Thanks to all the nurses, doctors, Child Life Specialists (we love you guys!), social workers, volunteers, receptionists, lab techs, pharmacists and food workers at Children's - you will never know what an impact you make in so many lives, but it's huge!!!!

Well, tomorrow marks #19 of 28 radiation treatments. Although I am forever grateful for the Univ of Nebraska Med Center staff and their research and the technology available there, I will not miss going down there everyday!!! Jacob's head and ear are RED, but he complains of it only a little. The steroid cream Dr. Raman gave us is really helping.

Thank you all so much for your prayers, support, meals, visits to the hospital, checks on Jacob's website, donations to Jacob's Relay for Life team, babysitting and overall support - we couldn't do this without you! I stand amazed by people's kindness and generosity. In a very grateful mood tonight - can you tell? I hope I can convey all of the appreciation Steve and I have for everything - it may take years, but we will try!!!!

Go give blood, make sizable donations to your favorite charity and love up your kiddos. Stepping off my soapbox for the night and getting the kids to bed! Goodnight!
Love, Kellie

Monday, June 2, 2003 8:58 AM CDT

JACOB'S TOTAL SO FAR FOR HIS FUNDRAISING FOR THE RELAY FOR LIFE=$2537!!!! ISN'T THAT AWESOME?!! LETS KEEP IT GOING! WE'RE TAKING DONATIONS UNTIL JUNE 20TH!

The Links now work at the bottom of the page!

Hi! The rest of Jacob's stay in the hospital went well. He did throw up once while in the hospital on Friday, but was much better after that. Then somehow he did not feel sick on Saturday after chemo, so that was great! Jacob had a blood transfusion on Saturday night while he was sleeping and that went much better than the last one he had when his blood pressure went through the roof. He slept through the whole thing and it all went off without a hitch! His hemaglobin had dropped to 9, which isn't that low, but when he is on radiation, they like to keep it above 9.3. Friday marked the halfway point in his radiation! 14 down, 14 to go! I can't believe we are approaching the halfway point of chemo also! Man, it feels soooooo good to make it this far. I stand amazed that Jacob is handling both chemo and radiation together so well. I thought he would be wiped out, but I shouldn't have underestimated Jacob's will and spirit to just keep chuggin along as though nothing has ever happened.

While in the hospital, we got a couple very special deliveries. Hank the Cat sent Jacob a huge bouquet of baloons that really brightened up his room! Then on Saturday a big box that was Fed Exed from South Carolina came. The Greenville Braves (Atlanta's Double A team) sent Jacob a batting helmet with all the team's signatures! I cannot tell you how excited he was. He is so into baseball right now - he was so taken with the signatures and that it was from a real professional baseball team. The letter that came with it was from the athletic trainer that heard about Jake's story through friends and had been reading Jacob's website. How sweet of them to send that helmet. Jacob wore the helmet the whole time we were in the hospital and then all the way home. What a true testiment to the kindess of strangers! Thank you Greenville Braves for making Jacob beam from ear to ear!!!

It really was an exciting time in the hospital this time with the Children's Miracle Network Telethon going on in the lobby! Friday night Steve, Brandon, Jacob, Joe, Brooke (the boys's Godparents)and I took a walk down to the Lobby, and they had all the equipment set up down there. It's amazing how much equiment goes into something like that. Then Saturday night we went down there for Jacob's interview. The place was buzzing with activity and it was like a party down there. We did our live interview and Jacob did such a great job. Not nervous or shy one bit. He showed his trophy that his great soccer coach, Keith Olberding gave him that says, "To my Buddy, Jacob, whose courage cannot be measured on a soccer field." He is so proud of that trophy!

You know how God just puts people into our lives when we need them or they need you? So true for us this past week. When we were walking around the 6th floor on Tuesday, Steve and I noticed Dr. Hellbusch (neurosurgeon) talking to a dad in the hallway. The dad had that, "I can't believe you are telling me my son/daughter has a brain tumor" look that Steve and I know so well. Our hearts drop to the floor everytime we see Dr. Hellbusch or the oncologists up there with a new family. I met up with that same family later the next day and found out it was a little girl who is 6 and she was just going down for surgery. Later that night I was thinking of going down to the ICU to see how she was doing, and then there they were back up on the 6th floor! She did so great during her surgery - the whole tumor was removed and she only stayed in the ICU 3 hours! We spent the rest of the week getting to know her dad and Skyler. This man is a single dad of Skyler and her 11 year old brother. His wife died 5 years ago of a heart aneurism. This little girl was born with spina bifida and has had 5 surgeries throughout her lifetime. She just started throwing up and falling down last weekend and they transferred her from Lincoln up to Children's when they found the mass in her brain. It's malignant and so they start the journey that no parent wants to take. I'm sure seeing Jacob and talking to us was of comfort to this dad as there is nothing like the kinship you share with other parents of kids with cancer. But he was also good therapy for us. It made Steve and I thankful to have each other in this journey and to recognize that there are so many people with a worse story than our own. Please pray for Mike and Skyler and the rest of their family as they begin chemotherapy.

Then when we were down at the Telethon, we meet a family with 5 year old little Charlie. Charlie has Burkett's Lymphoma. They have been through the ringer with long hospital stays and every other day spinal taps! As I'm talking with his mom, she says this is the second time they have been through this! Their 10 year old daughter was diagnosed with cancer (rhabdomyosarcoma) 5 years ago! She is doing great now, but where is the fairness in that? No one should have to go through all this once let alone two times! Her and her husband's strength was inspiring. Prayers for Charlie and his full recovery also.

You can always pale the color of your own situation by recognizing the people around you that shine in an even bleaker scenario. You can draw light on your own situation by acknowledging the strength of those that travel a road much harder than your own.

This just in...a strange development on Washington Street...a boy just gets discharged from the hospital after 5 days of hard chemo, 4 radiation treatments and a blood trasfusion and then spends the rest of the day running around playing tag and baseball with his family! Jacob feels good needless to say. Some limping started today and he has had occasional waves of nausea, but nothing a little teaspoon of Zofran can't immediately squelch (thank God for Zofran among other things!). He had radiation number 15 today. His burn has developed and he has quite a red ear, so Dr. Raman prescribed a steroid cream to put on his burn. It doesn't seem to bother Jacob too much, although he doesn't like to sleep on that side anymore.

So all is well here. Brandon is doing great, and it was nice having both boys home and to myself today as we don't have school to work around anymore. Make it a great day! GO GIVE SOME BLOOD!
Love, Kellie :~)

Wednesday, May 28, 2003 9:28 PM CDT

Hello, Everyone! We're here in room 610 of Children's Hospital, working our way to day number 3 of our 6 day stay. Jacob is doing great! No real nausea to speak of yet. Sometimes it doesn't hit until the third day of this chemo, but maybe we will luck out like we have so many times before. We have a pass for every morning to go to the Med Center for Radiation. It was so great getting out this morning to go down there. We felt like we were busting out of jail! Jacob still has his needle in when we go there, but they unhook all his tubing. He was a little worried today about getting back quickly so that he could get hooked back up. Then when we got back here to Children's, it became an official water fight day between Jacob and the nurses here! Two great nurses, Anisa and Rochelle, supplied Jacob with a huge syringe and he had his trick squirting camera. He had a great time fooling everyone with his camera today and the water fight went on all day! He loved every minute of it.

His counts were good when we arrived on Tuesday. His ANC was around 2000 and his hemaglobin was at 9.6. We will do counts on Friday again, and if he needs a transfusion, we can do that Friday night and be ready for discharge on Sunday. Saturday night at 7, Jacob, Steve and I are to be interviewed live for the Children's Miracle Network Telethon. Make sure you watch and better yet, make sure you contribute. I hope you never find out for yourselves, but there is nothing like a Children's Hospital when you need one! What a wonderful place this is! Just tonight they brought Jacob a model to work on and the nurse's asst. just made him a pizza - it's 8:30! Jacob loves this hospital and so do we - so, so thankful!

My cousin Diana, her daughter Haley and my Great Aunt Iris got here on Sunday night. Sadly, we got a call shortly after their arrival that my Great Uncle Bernard died Sunday night. So they had to quickly alter their plans and head out to Cambridge, Nebraska for his funeral tomorrow. Oh how I wish I could have gone with my dad, brother and the rest of my family to be at his funeral, but with Jacob in the hospital, it's just not possible. We were very dissappointed their stay got cut short. We made alternate plans for Brandon quickly, though, so we are very thankful for everyones help and flexibility.

We are also EXTREMELY thankful for everyone's generosity in supporting Jacob's fundraising efforts in the Relay for Life. I am still amazed at the checks that come in from people we don't know or long lost friends. So far, we have raised $2300!!!!! That is so incredible. When this whole thing started, I was really hoping to reach $500! I'm so glad I was so wrong in my estimate! If you would still like to donate, please do so - there is still time! Let's see how far we can get!!!!!!!!!!!

One more thing, as much as it hurt Steve and I, we signed Jacob up for Camp CoHoLo July 20-23! That means Jacob will be gone for 3 nights at this camp! I know Jacob will love it and he will be fine, but it's going to kill Steve and I!!!! Our nurse, Anisa, from the Oncology Clinic organizes it and will be there along with a couple of doctors and the Child Life Specialist, Christy. I know he will be in good hands and he needs to go and get away and do this, but it will be hard not having him under our constant watch. It would be hard enough if he wasn't sick! We will survive, though. If Jacob can survive a massive brain tumor, surgery, chemo and radiation, the least Steve and I can do is survive him going to camp for 3 days! Ha!

Well, I will end this finally. Thanks to everyone for the help with Brandon, the constant prayers and all the love and support. It takes a whole lot of love to cure cancer -I feel strongly that we have that part covered! Make it a great day! Love, Kellie :~)

Friday, May 23, 2003 3:37 PM CDT

JACOB'S TOTAL SO FAR IN HIS FUNDRAISING FOR THE AMERICAN CANCER SOCIETY'S RELAY FOR LIFE = $1900.00!!!!!!!!!!!MORE CHECKS FOR $25 AND $50 CAME IN THIS WEEK FROM PEOPLE WE DON'T EVEN KNOW! THANK YOU SO MUCH TO ALL THOSE THAT HAVE DONATED AND KEEP IT COMING! THERE IS STILL TIME TO DONATE! ANYTHING OVER $10 WILL GET A RECEIPT FROM THE AMERICAN CANCER SOCIETY AND IT IS TAX DEDUCTABLE. JUST E-MAIL US AND WE WILL SEND YOU OUR HOME ADDRESS. JACOB WILL BE MAKING THE SURVIVOR'S LAP JUNE 28TH AT OUR RELAY FOR LIFE AT MILLARD WEST! A SPECIAL THANKS TO MY GOOD FRIEND AMY LUEDERS AND HER STUDENTS AT BLAIR HIGH SCHOOL! THEY RAISED OVER $200 FOR JACOB! THANKS YOU GUYS - YOU ARE GREAT - WE WILL HAVE TO COME VISIT YOU ALL NEXT SCHOOL YEAR!!!!

Hello to All! Jacob graduated from Kindergarten today! Millard doesn't get out until Wednesday, but seeing as we will be in for chemo, today was his last stint as a Kindergartener. I went and picked him up before lunch and the whole class had on these great shirts that Taylor Sankey's mom helped all the kids make. They have all the kids' handprints on them along with Mrs. Parker's. What an awesome keepsake for all the kids, but for Jacob especially. I will always treasure this Kindergarten class of kids that have supported Jacob so in their concern and well wishes. Their parents have equally been supportive in helping to organize Jacob's fundraiser, visiting us in the hospital and even scheduling their kids birthday parties around Jacob's counts so he can go!
Then of course there is Mrs. Parker - what a great teacher! She handled Jacob's illness with grace and always made him feel an integral part of the class even if it had been weeks since he'd been there. What a wonderful woman and friend to our whole family. Brandon can't wait to be in her class in a couple of years! I was pretty teary when they were all giving Jacob a hand when Mrs. Parker told them that he is the first one of them to graduate to first grade and then they all gave him a big hug! He was pleased as punch and not sad one bit leaving the building. Thanks to Mrs. Parker for putting such a positive spin on such a bittersweet moment. At one point we never thought Jacob would see the end of Kindergarten, so we are as thankful for this day as we are sad to see it come. Just another road crossed - even if this one had a fork in it none of us could have expected. I look at those pictures of his first day of school and think we had no idea what was to come.

We also completed our second week of radiation today!!! 10 down, 18 to go! We saw Dr. Ramen on Tuesday and he said Jacob was doing amazing. He said he was going to throw the rule book out with Jacob because the kid doesn't seem to have any side effects. He took him off the steroid. He is just starting to get a little pink on his skin where he receives the radiation. We dilegently put his cream on that area so hopefully it won't get too sore as time goes on. Jacob has developed a coping mechanism when he is getting radiation - he puts himself to sleep! They say he goes to sleep within a mintue after they start and he does it just about eveyday. It's definitely a coping mechanism because I don't know how anyone can fall asleep to "Shake it like this" blaring in that room otherwise. Jacob loves that song - we just rock out to it all the way to the Med Center and Jacob is shaking ever limb to the music. He has such a spirit for everything social and fun! We also went in for counts on Thursday and to see Dr. Abromowitch. His hemaglobin came up to 10.1, so that looks good and his ANC was in the thousands. She set it up for us to get a pass everyday to go to radiation in the morning to the Med Center. Jacob will also be intervied for the Children's Miracle Network Telethon next Saturday night at 7:00 p.m. At least we have some action going on for this 6 day stay. Hopefully it will make the time go faster!

This weekend my cousin Diana (who was such a God-Send to us when she came up for 10 days to take care of Brandon when we had to go to Iowa City for the Embolization and then during Jacob's surgery), my great-aunt Iris and Diana's daughter Haley (15) will be coming up from Lubbock, Texas to spend a week with us. We are expecting them late Sunday or early Monday. We are so excited for them to come up and so grateful for their help with Jacob's hospitalization next week. What a relief not having to line up babysitting for Brandon everyday!

Well, I think that about covers it. Hope all of you have a great Memorial Day Weekend! Make it a good one! Love, Kellie :~)

Monday, May 19, 2003 8:16 PM CDT

Jacob's Total So Far in his Fundraising Efforts for The American Cancer Society's Relay for Life = $1565!!!!!!!!!!
Please continue to donate - You can e-mail me and I will give you our address. Any donation over $10 will get a receipt from the American Cancer Society and is tax deductable! Jacob's goal now is to hit $2000!!!! Please help him make it!!!! Thank you!

We went in for counts this morning and Jacob's white blood cells were way up (22,000), so he is free to go to school and go out in public. Of course that meant we went to Valentino's tonight for our High-Count Monday Night dinner! His hemaglobin is 9.8, so we may do a shot or transfusion to bump it up over 10, which is where they like it when on radiation. We see the radiation oncologist tomorrow, so we'll see what he wants to do then. After Children's, he and I went out to lunch and then over to the Med Center for radiation. Jacob came out of there kind of unnerved again, so he was very quiet on the ride home. He was better after a while, though. I don't know if he just gets to feeling funny from holding still so long or if the whole process and atmosphere in there just kind of throws him off. I forgot both Teddy and his Radio Disney CD, so that didn't help the situation either. I know, I know, smooth move.

Jacob is doing well on the steroids. He may be a little crabier and quick tempered than usual, but nothing like he was on those first few days on the higher dose. It was like living with Mr. T! He is limping quite a bit today; probably because his white count is so high, so I'm sure that will get better now that we have stopped the shots.

This is the last week of school for both boys. Brandon's last day is Wednesday and Jacob's last day will be Friday. I can't believe Kindergarten is over - I can't believe how we ended the year! I never thought Jacob's Kindergarten year would entail him getting cancer. You really never know what is coming around the corner. Steve and I learned that early on with our mothers' early deaths. You really shouldn't wait for the perfect moment to use the nice napkins or the pretty candles or to take the trip you've always dreamed of. You shouldn't waste time being mad or hold back on something because of what other people might think. When it comes right down to it, there is very little that is worth getting worked up about. Ok, on that last rule, Steve has trouble utilizing -for those of you that know about his bubble, you can appreciate that! Ha! Anyway, you just never know.

That's our prospective - not the boys'. Brandon is running around here in a Blue Power Rangers costume that he charmed out of Kathy Juma's house today. I won't let him watch the TV show, so he really feels like a rebel walking around in it. Yesterday as Jacob was building things with his Leggos, he told me he wanted to be an architect when he grows up. "Great!" I said. "Yeah," he said with excitement, "then I can make millions building Mini-Malls!" No matter what Steve and I take from this year, for Jacob and Brandon none of it matters. It's not about the cancer that has turned our lives upside down, it's about costumes and Mini-Malls! Jacob is sick, but he doesn't know it and he doesn't care to. It's not about spending half the year in the hospital to him, it's about the toys that are packed in the suitcase or Grandpa bringing McDonald's and Blizzards while he is there. It's not about the surgery he almost didn't make it through, it's about all the TV he got to watch afterwards. It's not about missing half the year of school, it's about how sweet it felt to be there when he could. It's not about spending endless hours at the oncology clinic, it's about the great toy room and kids there to play with. It's all about the fun! It's all about being a kid, no matter what the situation.

Well, until next time, that's all for now. Make it a great day! Love, Kellie :~)

Thursday, May 15, 2003 4:42 PM CDT

JACOB'S TOTAL SO FAR IN HIS FUNDRAINING EFFORT FOR THE AMERICAN CANCER SOCIETY'S RELAY FOR LIFE....$1190.00!!!!
KEEP THE DONATIONS COMING!!! JACOB IS THRILLED EVERYTIME A CHECK COMES IN THE MAIL!!! THANKS TO THOSE THAT HAVE DONATED SO FAR!!!

Hi, Everyone! So far so good with the radiation. We started on Monday. The first three days were long - Jacob was in the mask that's screwed to the table about 45 minutes each day. Today was much shorter and he seemed very happy about that. He takes his Teddy and his favorite Radio Disney CD in there with him. We started with a cream that we put on his head two times a day and a steroid to hedge off any brain swelling that may occur. He is handling the steroid well so far. Four Treatments down, 24 to go!

Along with radiation at the Med Center, we went in for counts at Chidren's and to see Dr. Abromowitch today. His ANC has dropped to 860, which is higher than they usually are at this point after treatment. Not sure if they are on their way down or up, but hopefully they will be back up by Monday so we can stop the shots. His other labs were fine, and Dr. Abromowitch said everything looked good.

Jacob was able to go to school Monday afternoon and Tuesday morning this week. His home-based teacher was here today and will be here tomorrow too. We will lay low this weekend with his low counts. The steroid makes him more susceptable too to infections, so we'll have to be extra careful.

All else is good here - hope everyone has a great weekend!
Love, Kellie :~)

Monday, May 12, 2003 3:08 PM CDT

NEW PICTURES JUST PUT IN THE PHOTO ALBUM! CHECK THEM OUT!!!!!!
Hey, Everyone! Hope you enjoyed your weekend! Jacob had a good weekend. He threw up Friday three times, but was better on Saturday. We insisted he take the Zofran (tummy med) on a regular basis on Saturday, so I think that's what prevented any further eruptions. He did seem queasy a couple of time while eating, but otherwise was good. By Sunday he was feeling great even without the Zofran. The shots are going well and he is starting to limp a little bit from those and his last chemo, but nothing too noticible yet. We went to Valentino's Sunday morning and he filled up on HAM PIECES of course. It was a fun Mother's Day and the best present was having a nice day with my 3 boys all feeling good!

We started radiation today. We first went to Children's to get his blood drawn for counts (they were good today) and then headed to the Univ of Ne Med Center for radiation. We met with the doctor first and he explained that he had been consulting with doctors in Rhode Island and in North Carolina regarding the strangeness and complexity of Jacob's case. They, Dr. Raman (radiation oncologist) and a radiology professor from the Med Center have been working two solid weeks to come up with a plan to treat the bone cancer without compromising brain, eye and ear. They were just working on plan number 18 this morning! It's unbelievable how complex and painstaking coming up with radiation treatment is and how much work goes into each plan. With the advancement in technology, they are able to tweak even a centimeter here and there to optimize outcome and minimize side effects. Jacob's radiation involves one of the newest forms of radiation called IMRT. He will get 28 treatments, everyday with holidays and weekends off. The biggest threat is to his hearing which over the years will show a complete or partial loss in the affected ear. Dr. Raman is still confident that his chance for later learning disabilities is very slight and he feels there should not be any effect on his eye either. As he was explaining this, he said, "I have to worry about this stuff 20, 30 years down the line because this child will be here for a long, long time. So that is why I have to worry about even the slightest effect he will have many, many years from now." Tears welled up in my eyes as he said this - it was his subtle way of saying we have a pretty good chance here of seeing Jacob live into old age and it meant a lot to Steve and I to hear that. I want to believe that totally and wholeheartedly all the time, but of course I want to be cautious too so as not to be caught off guard. It's a delicate balance of hope and belief and difficult surprise.

They first did films and then went into doing the treatment, so it was a long time that poor little Jakie had to lay there with that tight mask on - about 45 minutes. When he was all done, he came out with Dr. Raman and the nurse and ran into my arms and said, "Mommy, just hold me." He looked pretty unnerved. He wanted to go and get some fries and call it a day. When we got home, Steve encouraged him to get his shoes on and go to school. He was reluctant at first, but when I picked him up after school, he was so glad he went - even if it was only for an hour and a half. Just good to feel like a normal kid after the weird stuff he'd been through. I know it will get easier for him as we go day to day. By the time we are done with radiation (June 19), we will be through chemo #7 and at the halfway mark! That will feel soooo good!

Jake's fundraising for the American Cancer Society's Relay for Life has been great! People we don't even know have been sending money just through word of mouth or reading it on the website! We got $50 from Colorado from a long lost college friend and $50 from California from a gal we've never even met! People's kindness floors me sometimes! It gives me goals in what to strive for. Jacob's total so far is $925.00!!!!!!!!!!!!!!!!!!!!!!!!!
He is so darn excited about the whole thing. If you are planning to donate please do so soon, and we thank you so, so much! Hitting $1000 will be pretty exciting around here! Thanks to everyone who has donated so far! Have a great day and we'll keep you updated! luv, Kellie :~)

Friday, May 9, 2003 11:38 AM CDT

Hello Everyone! Steve and I took another class at the School of Hardknocks again last night at the hospital. Jacob was supposed to be done with his treatment at 6:30, but between an IV pump that was not working properly and a nurse that would not listen to us that the thing must be broken, we didn't get home until 10:15. Actually I came home at 9 because our babysitter had been here sice 1:30 and needed to get home herself. So Steve hung back with Jacob and they got home around 10:15. We were so frustrated by the whole deal by the time we got home, it took a while to unwind. Anyway, Jacob did very well this time around. He continues to amaze the staff and us with how well he takes this chemo. Jacob's day was made on Wednesday with the harpist that comes up there to play on Wednesday afternoons. We set up his chair by the doorway so he could look out and watch her. He just sat quietly listening to the music and looking at a book. He was so glad she was right outside his door - "we've got to get this room next time, Mom!" he told me! Thanks so, so much to those that came up to see us and those that took care of Brandon. Jacob loved having his friends Morgan and Mitchell Krohn come up and play with him! We can't begin to thank you all enough for your support.

Jacob slept well last night as did all of us, and he slept in until 8:45 this morning. He woke up wanting to go to school, but while he was eating breakfast, he threw up. After a little Zophran, he was feeling better and begging to go to school. So he went around 9:30 and then they called around noon and said he threw up again at lunch. I went and picked him up and he is resting on the couch now, but overall is doing well and feeling good. Last night when we got home, he was break dancing in the middle of the family room, so I'd say he is doing very well considering all the toxic chemicals that are floating around his little body.

Should be a quiet weekend with some family get togethers planned for Sunday. Jacob's counts should be good enough to get out and about some, so we may catch a movie with the boys. We go in Monday for counts at Children's and then for radiation at the Med Center. We're figuring out that the next 5 or 6 weeks on radiation are going to be a lesson in juggling two hospitals. While we have to be at the Med Center everyday for radiation, we will continue our biweekly appointments for blood counts at Children's as well as inpatient chemo one of those weeks. We have been warned too that during radiation, they will want Jacob's hemaglobin to be over 10, which it often drops below, so we should expect more tranfusions (which take at least 4 hours)also. I'm sure we'll be well versed in the fastest route between Chidren's and the Med Center and all the McDonald's in between them by the time radiation is over! Jacob has really lost his taste for sweets unless they are in ice cream, but he LOVES salty french fries! He can't get enough salt, cheese and italian food! Needless to say we will be hitting Valentino's this weekend also!

To all the mom's out there - Happy Mother's Day! So many of you say to me, "I don't know how you do it", but truth of the matter is, you would be able to do it too because it's your child and that's your job. Being strong, positive and supportive in even the worst situations is what makes a great mommy and that ability lies within all of us! Part of what gets me through this is the other mommies or mommies to be that are my friends that are helping us through this. I am so amazed at the kindness in you guys and I hope you know how much I love you! Also to all the other mommies I have met at the clinic and on the internet who have their own sick kids, I value your friendship and enjoy your company. I can't wait until I don't see you all the time at the hospital or until our websites are too old and dusty to even update because we have moved on! Enjoy this beautiful day (at least here in Omaha it is one) and have a great weekend! Love, Kellie :~)

Tuesday, May 6, 2003 9:31 PM CDT

Hey, All! We were in the clinic all day today, waiting for blood counts and for our room. We got in about 3:45 and got started with chemo around 6. So we will probably be there well into the evening Thursday finshing up. Jacob did get over to the hospital today for a visit with Blue and Joe of Blue's Clues. They are in town this week and visited the hospital. Jacob got a Handy Dandy Notebook from Joe and was not even that scared of the big Blue (he's got a life size character phobia he is working on :~)). Thanks to Christy Hogan in Child Life for making sure we got over to the 5th floor for that! Jacob is feeling good so far, but hard to tell as he's just started. All his counts were good and Dr. Abromowitch was glad to hear his limping was much improved with the end of his shots.

Thanks to the Sullivan Family for dinner on Saturday night - it was sooo good. Jacob had a great weekend with all our visitors this weekend. We did a little bowling on Sunday, but had to scoot out of there quickly with the tornado warning. Jacob was one scared little puppy driving through the storm. We made it home, hung out in the basement for a while and were thankful the tornado didn't show up to pay us a visit! Man, have we had the rain! So great how pretty and green everything is! Got to love the springtime!

The trip to the zoo on Monday for Jacob's field trip was so fun. The weather was great and Jacob didn't seem anymore tired than the rest of the group after 6 hours at the zoo. He loved the BUS RIDE and even got to see Dad on the interstate on the way home!

Thanks to everyone who has donated to Jacob's effort in raising money for the Relay for Life for the American Cancer Society - he is so excite everytime a check comes in. Our great friend,Amy Lueders, even got her students at Blair High School involved! Thanks, Guys! We have exceeded his goal of $100, so now he is thinking $1000! Hopefully we can do it. Mom could always have a big jewelry sale! Thanks for the notes in the guestbook and for all your support.
Make it a great day! Love, Kellie :~)

Thursday, May 1, 2003 8:26 PM CDT

Hello, Everyone!!! It's so nice getting all those notes in the guestbook - we love that!

Jacob is doing well and went to school this morning. His walking has improved since being off the shots, but he is still hobbling a bit. After I picked him up from school, we went to Children's to have his blood counts taken. When we got there, we noticed KAT 103 was there doing a mobile broadcast and having a radiothon for the Children's Miracle Network. Jacob wanted to go over and check it out. They asked us if we would go on the radio and speak about Children's Hospital and Jacob's illess. Of course he agreed. So they interviewed him and me on the radio, and Jacob did a great job! He talked about his illness and his bald head and what he loved most about Children's. Then at the end he wanted to say hi to Dad, so he said, "I just want to say hi to my dad and thanks for listening to KAT 103!" We were all shocked that he said that b/c we didn't even tell him to - they wanted to offer him a contract to be a DJ, but we said his calendar is a little full this year. We told them we might consider it next year when things open up a bit for him. Of course by then he will be busy with school, swimming lessons and whatever sport his half skull lets him partake in! Anyway, Jacob was thrilled with being on the radio!

All his counts were good - no transfusions needed and his ANC is still good (3000), so we will jam pack the weekend like we always do just before an admission. Tomorrow, there is no school at Wheeler for Kindergartners b/c of Kind. Round Up. So he is going to join his friend Justin at Black Elk Elementary for lunch so he can still get the Little Smokies he's been wanting so. Then he is having his home based teacher come and then a friend from school is coming over. Then our friends Shawn, Missy and Cole Gilbert are coming into town from Cedar Rapids, IA, to spend the weekend with us. Jacob is so excited! He can't believe how much action he has going on - new faces besides Mom and Dad!!!

Jacob will go to the fieldtrip on Monday to the zoo and then chemo will start Tuesday and we will be out Thursday night. These three day stays seem like a breeze now that we have a couple of 6 dayers under our belt. That will be chemo #5 out of 14. Have a great weekend and don't forget to donate to the Children's Miracle Network for their telethon this weekend. I hope none of you ever have to find out how great it is to have such an incredible facility like Children's Hospital at our disposal, but it's nice to know it's there! Love, Kellie :~)

Tuesday, April 29, 2003 0:07 AM CDT

HI! Not a lot to report. Jacob had a good weekend. We played a lot outside in this beautiful weather, although Jacob did seem to tire easily outside. The heaviness of his feet really slow him down and take so much extra energy to move, but hopefully it will get better now that he is off the neupogen shots for the week. The Dr. said as long as we see improvement between chemos or off meds with his walking, we will keep dosages the same. Otherwise we would have to decrease the Vincristine (one of his chemos), which we don't want to do. His counts today were good (ANC 7000), but they do seem to be slowing down a bit. His platelets didn't come up as well as they would have liked, so we will have to go back Thursday for blood counts again for a check on those. We did get to stop the shots and he is allowed back out in public. So that means school tomorrow and a trip to Valentino's for our "High Count Monday" celebration. Jake can't get enough of those ham pieces off the salad bar there! Who cares if the pizza and pasta are good? - their HAM PIECES are incredible according to Jake! We did an echocardiogram today also, which is a routine check as the chemos are hard on the heart.

Tomorrow morning Jacob will go to school and then we have his hearing test at 1 to get a baseline before we start radiation. He should be able to go to school all week for half days and then he gets to go to the zoo with his class on Monday, the 5th! He is so excited to go on a field trip finally. He could care less about where they are going, he just wants to ride on that bus! I'm so glad it works out for him to go! That day I will be going with Jacob to the zoo, and Steve and Brandon will be heading to the Gifford Farm for a preschool field trip!

When we were in clinic today, there was a new kid there with his mom. His mom had that look of a deer in headlights that we all have when we join the ranks up there. I will never forget our first day in the clinic! I can't even describe the feeling - such angst and anxiety about what was to come. I introduced myself to mom and we talked for a while. Then we were getting ready to leave and as Brandon and I were coming out of the bathroom, I heard Jacob go up to the new boy and say, "Hi, my name is Jacob. I heard you were new. This is a really fun place and next time I see you here we can play a game if you are feeling better." He is destined to be a politician, I swear! God help us! :~) I love his spirit, his lack of all inhibitions, his ability to socialize with everyone and his true heart in cheering everyone on. I just love him period. And Brandon too. Our children are truely the greatest gift given to us.

Hope everyone has a good week and we'll keep you posted!
Love, Kellie :~)

Friday, April 25, 2003 4:26 PM CDT

Hey, Everybody. Today is a much better day than the last post. If you missed it, check out the previous journal entries to see what happened. Anyway the boys and I started the day with going to the park. Then Jacob met with his teacher this afternoon and he is feeling good. Limping a lot from his meds, but otherwise doing well.

We were in the Clinic yesterday for blood counts and as expected, Jacob's were on the low side (ANC 430). So no school and no going to public places for the weekend. His hemaglobin was good so looks like the blood transfusion on Sunday worked. On Monday we go back for counts and to do an echocardiogram to check for any heart damage from the chemos. We will do an echo every 3 months or so. We also talked with Dr. Abromowitch about his radiation schedule and figured out we don't start radiation until after his next chemo (May6-8). So we will start radiation on the 12th. We also go the results back from the pathologist at Washington University that we sent the slides to for a second opionion on the diagnosis. He concured with the findings of it being a Ewing's Sarcoma. He said it was a good example that a Ewing's Scarcoma can indeed exist in any bone in the body. So we were relieved and feel better going forward at this point. I cancelled Jacob's hearing test as now we have more time to get it done and his counts were low on Thurs and I didn't want him going into an ENT's office with low counts. So we are doing it on Tuesday afternoon instead.

Hope everyone has a great weekend! Thanks to the great people of our church, St. Andrews Methodist, for the Wednesday night meals! We appreciate everyone's support!!!
Love, Kellie :~)

Wednesday, April 23, 2003 4:14 PM CDT

Hi, Everyone. Yesterday afternoon at the Med Center was a rough one. Dr. Raman (radiation oncologist)went to Children's to get Jacob's scans and met with Dr. Hellbusch (neurosurgeon)before we arrived for our 3 o'clock apt. When we got there he said he was shocked by the size and look of Jacob's tumor in his initial scans. That's a hard thing to hear from a man that looks at tumors on scans all day. He asked, "have you gotten him baptized again, because that kid was reborn the day they took out that tumor!" He called Dr. Hellbusch a "brave man" for even attempting to take it out. He described Jacob's tumor as a "monster" and said he hadn't even begun to imagine it looked anything like that. He was amazed that Jacob had not one single neurological deficit from it and amazed that it had been removed successfully. Now that the tumor is out and we are past all that, it's so strange and sometimes really hard to hear what the doctors really thought of the tumor. When we were in the midst of dealing with it, they acted very calm about it. But now that their guard is down since the tumor is gone, I'm taken aback sometimes by the shock it creates in doctors that deal with tumors on a regular basis. It brings it all back to us how incredibly blessed we are to be where we are and to have Jacob with us. It also brings the emotions surrounding the situation when things were uncertain and so critical flooding back.

Then there is seeing your little boy in a sort of space-age looking room with all this high tech equipment surrounding him and his little bald head in a clear plastic headrest with a white, mesh-looking plastic mask on that is screwed down to the table that he is laying on. Everyone has to leave the room and close the door and watch him through the window as he lays there with his head screwed to the table probably thinking, "What are they doing to me now?" We tell him not to be scared and that it won't hurt, but what else can he be but scared? It only took a couple of minutes but it was enough to break my heart into pieces. After the similation, we went up to Radiology to do a treatment planning CT scan of his head. I had Jacob's port all nummed up for the needle poke and they accessed it for the contrast. Jacob hates the needles, so he was crying and begging us to hurry up and take it out. Before she took it out, Steve and I both asked if she was going to Hepranize it (put Heparin (sp?)in it, which is a blood thinner that prevents clots from forming in his port). She said they don't use Heparin there at UNMC and that he didn't need it. We told her that they ALWAYS do it at Children's. She argued and said we didn't need to. So we go along with what she says - she should know, right? But after the scan was over, Steve was uneasy and made me call the on-call oncology doc (it was 5 pm by then). That doctor says it HAS to be Hepranized and that we need to go to Children's ER to do it. So we pull out of UNMC and head to Children's and Jacob figures out that we are going to poke him again and is upset. Steve is livid that we didn't insist on the Heparin at UNMC - it wasn't a pleasant drive to say the least. But then Steve comes through again with the great idea to run up to the Oncology Clinic up at Children's and see if a nurse is still there that can do it. Then we can avoid the ER and Jacob will be in his familiar environment. Well, we got up there and Lesa Grovas the Nurse Practioner was there. She and Christy Hogan the Child Life Specialist stayed and Hepranized Jacob's port. Thank goodness they were there, that Steve had the idea and that they were nice enough to help us out. I think Jacob felt the tension in Steve and I, and that we were at our threshold for the day, because he just pulled up his shirt with little fuss and was great for the whole thing. Thank God for our little boy!

So that was the afternoon. Even though the scope of Dr. Raman's radiation has expanded, he still thinks he can avoid much of Jacob's brain and that he would still be at little risk for learning disabilities later on. He did say, though, that the risk to Jacob's hearing in that ear has increased and that he could lose some or all of his hearing. We are going in to our ENT tomorrow to get a baseline audiogram. He did say that he is confident he can clean up that bone with good margins and that if Jacob gets two years post without any reoccurance he has an excellent chance to live to be an old man. So if we come out of this with permanent hair and hearing loss, but still have all of Jacob's amazing little brain in tact, I can live with that. Plus Jacob will be alive! We are starting radiation on Tuesday, the 29th. I know it won't be as scarry the next time, and I know soon Jacob will be used to it and love going there everyday (they are so nice there!); but it's just hard starting something new that is so life-saving but also so life-changing.

Jacob went to school yesterday and today until 2. He did pretty well, but seemed tired this afternoon when I picked him up. He was VERY bummed about missing the Kindergarten field trip tomorrow also. Lots of crying when we got home along with lots of, "I don't want to be sick anymore; I want to be done with treatment; Why do I have to be the one who is sick?" So the boys and I sat down together and watched the Mighty Ducks and that perked us all up. Plus we are going to Dairy Queen tonight for a little drive-thru therapy! That should help too. Nothing a little Blizzard can't cure!

We'll be at Children's for counts tomorrow and then his hearing test at the ENT's office in the afternoon. Jacob's counts should be on the low side, so we'll be getting stuff done around home this weekend. Jacob will miss the rest of this week of school. Time for Millard Public School at the kitchen table - so thankful for our home-based teacher!

Make it a good day and go give some blood. Did you know that only 5 percent of eligible people actually give blood? I just read that - let's try and up that percentage! Will update soon, Kellie :~)

Tuesday, April 22, 2003 8:17 AM CDT

Hello! We got home later than expected on Sunday. We were all ready to leave in the morning and then the doctor came in and said Jacob's hemaglobin was in the tanker (7.7), so we would have to stay for a blood transfusion. We started that around 1 and then Jacob's blood pressure went through the roof - giving all of us a scare including our nurse. They turned the flow rate down and Jacob's blood pressure came down with it. We got home around 5 and finally had our Easter Egg Hunt! Thank goodness for Children's leaving an Easter Basket for Jacob in the morning. Jacob thought for sure the Easter Bunny wouldn't leave him anything at home because he was in the hospital and wouldn't know that he was coming home that day. His worries were calmed with the Easter Basket in the morning -got to love a Children's Hospital! Jacob threw up a couple more times and lost his appetite for much of the time we were in the hospital. Overall, though, he did well, but was more than ready to go home! Thanks so much to all of you that came up and visited. I know Jacob loved having his friends Morgan Yarnell and Justin Juma come by and play. We all love the visits - they certainly make the hours pass by quicker! Thanks also to everyone who watched Brandon.

We went to the Med Center yesterday (it's here in Omaha) to meet with the Radiation Oncologist, Dr. Raman. What an incredibly nice man. He spent an hour and a half with us discussing Jacob and getting to know him. He feels confident that he can radiate the affected area without penetrating much of Jacob's brain. He thinks his chances for long term learning disabilities are minimal with the way they are doing radiation! Thank God! He said Jacob would do very well during radiation since we will be missing his ear, eyes, salivary gland and mouth. He will get a burn on the affected area (especially with his fair Irish skin) and may be more tired, although Dr. Raman doubted the latter. He said he would permanently lose his hair in that area, so when the rest of his hair grows back after chemo, we will have to get creative with Jacob's hairdo. We'll take the hair loss over learning disabilities any day! Overall it was a good meeting. We are so happy with Dr. Raman - such a nice man and his nurses seemed very nice too. There is some discrepency as to when we are going to start - next week or a couple weeks from now, but they said they will get all that worked out in a couple of days. He didn't have all Jacob's scans yet, so we have to go back this afternoon and they will make Jacob's mask that will keep his head in place, do a simulation and a treatment planning CT scan of his head (agghh, another needle poke!). He said Jacob would have 31 treatments - everyday for 6 weeks and 1 day with wekeends off. Talk about intense! When Jacob is inpatient for chemo, we will have to work out how we will get him out of Children's and down to the Med Center for treatment. Dr. Abromowitch says she has to work out the "rule of the lodge" on that one! :~) So we are feeling a bit overwhelmed with our upcoming schedule, but we are happy with the good chance that Jacob will come out of this with little brain damage. Hopefully those 6 weeks will go quickly. Our schedule is at the beck and call of Jacob's treatment, which we have adjusted to, so we'll just take it one day at a time.

Jacob is feeling good. His appetite has been good along with his spirit. He is going to school this morning for a little while and probably tomorrow morning too. We'll be at the Med Center this afternoon and then in to Children's for blood counts on Thursday.

Make it a great day! Love, Kellie :~)

Thursday, April 17, 2003 10:40 PM CDT

Hey! I'm home from the hospital as Steve is on duty tonight. Brandon is asleep on the couch, so I thought I'd take a minute to update.

Jacob is doing well with this round of chemo (#4). He threw up once the first night, but has done well the last two days. He is full of energy and keeping the staff entertained. Poor kid got a little stir crazy tonight, frustrated with the boredom and the sight of the same 4 walls! We are more than halfway done with this one, though, and so thankful he feels good enough to get bored. Jacob has been enjoying his hour with his teacher during the day - it certainly breaks up the afternoon! Talked with Dr. Abromowitch (oncologist) at length on Tuesday and she feels he is doing great - "could it get any better?" she said. We meet with the Radiation Oncologist on Monday morning at the Univ of Ne Med Center to go over the radiation plan and I'm sure all the nasty side effects. I've heard about this "possible side effect" meeting from others, and I think we are prepared. The key word there is "possible," so we will focus on that. It's all a matter of semantics! Ha!

Brandon is doing great - he has had a couple of colds since the tubes were put in and like the magic they have always worked for my boys - no ear infection. Got to love those little tubies!

Hopefully we'll be out at a decent time on Sunday to enjoy a little Easter. We wish all of you a happy and blessed Easter! Thanks for all your notes and support. Thanks to "Hank the Cat" for Jacob's balloon bouquet he received today! And to Josh and Liz - he loves the bounce back ball - great idea! Luv, Kellie :~)

Monday, April 14, 2003 8:23 PM CDT

Hi, Everyone! We had a great weekend, playing outside, going out and spending the time as a family of four. It's amazing sometimes how much time we don't spend with the 4 of us together. We are so grateful for these weeks when Jacob's counts are good, we don't have to go to the hospital at all and it's as if everything is normal again.

Well, back to reality tomorrow. We start chemo #4 with a 6 day stay. We should get out on Easter Sunday, hopefully before noon. Jacob doesn't seem quite as cranky as usual when we have an impending admit looming the next day, so I think he's resigned to this routine. Please feel free to come up and visit us during the day or evening. Visitors make such a huge difference in how fast the days pass. I love it when a friend comes up to visit for a while - Jacob loves it too - then Mommy is off his back about watching too much TV or getting his homework done! Steve and I trade off the nights as much as possible - thank God for his flexibility at work!!! We're up every 2 hours to pee, so it's kind of like having a newborn! Thank goodness he is a boy, though. That urinal has become a good friend of ours.

We had a busy weekend. We went to the Omaha Royals game Friday night - what a blast! The boys loved all the acitivity and music and even watched the game once in while! Every Friday night the Royals have fireworks after home games, and they were spectacular. The great weather and the smiles on the boys' faces mixed with our relief from Jacob's clear scans made the night seem almost magical. Brandon had a little cold over the weekend, so we stayed away from church and just played outside the rest of the weekend. Jacob went to school this morning and he had a great day. We dyed some eggs this afternoon and he and Brandon helped Daddy paint shelves out in the garage tonight.

Well, I better get to packing. Thanks for all your notes in the guestbook. We love reading them and hearing from everyone! Until next time, Kellie :~)

Friday, April 11, 2003 4:59 PM CDT

Hello, Everyone. Well, I have finally wound down enough to really enjoy the news that Jacob's scans were clear! I also talked to Dr. Hellbusch (neurosurgeon) who felt confident that the clot in Jacob's brain (actually in one of his sinuses)is something we are not going to worry about. He said it was in the area of major bleeding during surgery, and that there was a huge hole left there after removal of the tumor. In an attempt to stop the bleeding and save Jacob's life during surgery, they had to heavily pack that area and thus a clot formed. He said if the clot was going to break free and cause problems elsewhere or cause a stroke, it should have done it by now. So for now we will leave it, keep an eye on it and not worry about it. Dr. Hellbusch is not worried and he knows more about it than I do, so I will let it go! So with Jacob's scans being clean, we will continue with our initial plan of treatment being 14 rounds of chemo (we have 3 done) every 3 weeks and the 5-6 weeks of radiation. Radiation should start in the next couple of weeks, and we will continue with our regular chemo schedule through that. For those of you that are interested: Our chemo consists of 3 and 6 day stays every other time with Doxorubicin, Vincristine and Cytoxin being given on the 3 day stays and Ifosphomide and Etoposide being given on the 6 day stays. So we are so happy to be able to continue with this plan!

We met with our Make A Wish team on Wed night. Pam and Bertie are our wish coordinators, and Jacob told them about his desire to go to Hawaii and what he wanted to do there. We decided on a trip to where they make Legos as a second choice. I think it will really help Jacob getting through all this crap knowing he has that trip to look forward to. It won't hurt Mom or Dad either!

We went to Candlelighters for the first time last night (support group at Children's) The parents meet separately and then the kids do fun activities. The boys loved it! When I was telling Jacob about it the night before, he said, "Oh yeah, Mom, I know all about that, it's called a Cancer Club." So we all enjoyed "Cancer Club" last night.

Anyway, we have a jammed packed weekend before we are holed up in Children's for the week. We are going to an Omaha Royals Baseball game tonight, Easter Egg Hunt tomorrow and then church and Sunday School (yeah-it's been so long since Jacob has gotten to go) and the circus on Sunday. Expecting a beautiful 70 degrees here all wekened, so we will be enjoying that!

Thanks for all the well wishes and prayers this week. Everyday is a day closer and every step gets easier with the gentle pushes of our friends at our back! Have a great weekend and love up your kiddos! luv, Kellie :~)

Wednesday, April 9, 2003 3:36 PM CDT

***UPDATE - THURSDAY (4-10) - We just heard that all Jacob's scans were clear - he is Cancer Free!!! He does have a small clot in one of the sinuses of his skull from surgery, but they may just leave it alone. They will let us know if they decide to do something with it. But all is well and we are VERY HAPPY!!!

WED (4-9)Hi! Went in this morning for Jacob's scans and after we got the dreaded IV started - thanks to the great Radiology Staff and Child Life Specialist and friend Laurie Lycan - Jacob went in for his MRI. He held still as always and only complained that the test wasn't long enough because he didn't get the whole movie watched (they let you watch a movie while you are in there - Jacob picked Sandlot). We followed that with the CT scan and the Bone Scan med injection and then a skull x-ray. Jacob and I had a little date down in the cafeteria for some Fruit Loops and then headed up to the Oncology Clinic to play until it was time to head back down for the Bone Scan. Steve met us up there after taking Brandon to preschool, and he saw Dr. Hellbusch (neurosurgeon) in the hallway on his way up. Dr. Hellbusch said he would go look at the MRI and then come up to the Clinic and give us the results. A nervous belly followed that bit of news and after about 20 minutes, Dr. Hellbusch came up and told us the MRI looked good! He said the results were not normal, which is to be expected after Jacob's surgery, but that there was NO EVIDENCE OF TUMOR!!!! Needless to say we were extremely relieved. We still have the results of the Bone Scan and CT Scan to get back tomorrow, but the Brain MRI was probably our biggest worry. We were so grateful for Dr. Hellbusch making a point to read Jacob's scan and find us to give us the results! I could go on and on for years with how much we love that guy! But I will spare all of you that pain and just tell you that Steve and I are so happy that at least the Brain MRI looks good. We should be able to sleep tonight - something I don't think we have done well the last week or so. When I get the results tomorrow on the rest of his scans, I will put it as a post script at the end of this message.

Jacob's Music Program was great yesterday. All the kids that we've gotten to know this year in Jacob's class just seemed so grown up and matured from the beginning of the year. I used to volunteer in Jacob's class, but have missed their growth and development for the last couple of months, so I am taken with how much they have changed. Jacob was a true ham - raising his hands and saying, "Thank you my people" between songs. You couldn't hear him, but I was reading his lips and knew that's what he was saying - such a goof! He knew more of the words to the songs than I thought he did. I don't think he had to use my "watermelon" trick. He never did understand that trick anyway. He just looked at me when I told him about it like I was crazy. I was so happy that he got to participate in the program. I looked at him up there and thought how great it was to see him there in school with all the other Kindergarteners just being a normal 6 year old boy for a while. It's things like that that I am so thankful for. I hope I always have this appreciation for the things that he and Brandon do. Yesterday when they were fighting (which they are so good at), I was thinking I love hearing that fighting sometimes because it means I still have my 2 boys! Then after a few moments, it started to drive me crazy again...but anyway, we've had a great couple of days on a lot of fronts.

Tonight Jacob's Wish Coordinators are coming over to start laying the groundwork for his Make-A-Wish trip. One of the gals was Gary's (Steve's dad) partner when he was a Wish Coordinator. Unless Jacob decides to unleash a whole new plan, he is wanting to go to Hawaii! He has been asking to go to Hawaii for 3 years. I think it all started with Little Lamb Preschool's annual "trip" to Hawaii when Jacob was in the three year old class there. I know he has specific plans for the trip. We are so grateful to the Make-A-Wish Group. It's one of those things you never want to be on the receiving end of, but it's such a wonderful part of this whole process. It will be a welcome reward for all of us when Jacob is done with treatment. I can't imagine how good it will feel to spend a week or so with all 4 of us together at the same time!

Next week is chemo #4 - our long 6 day stay - visitors more than welcome of course. We will start radiation a couple of weeks after that.....We think we can, we think we can, we think we can......
Luv, Kellie :~)

Wednesday, April 9, 2003 3:36 PM CDT

Hi! Went in this morning for Jacob's scans and after we got the dreaded IV started - thanks to the great Radiology Staff and Child Life Specialist and friend Laurie Lycan - Jacob went in for his MRI. He held still as always and only complained that the test wasn't long enough because he didn't get the whole movie watched (they let you watch a movie while you are in there - Jacob picked Sandlot). We followed that with the CT scan and the Bone Scan med injection and then a skull x-ray. Jacob and I had a little date down in the cafeteria for some Fruit Loops and then headed up to the Oncology Clinic to play until it was time to head back down for the Bone Scan. Steve met us up there after taking Brandon to preschool, and he saw Dr. Hellbusch (neurosurgeon) in the hallway on his way up. Dr. Hellbusch said he would go look at the MRI and then come up to the Clinic and give us the results. A nervous belly followed that bit of news and after about 20 minutes, Dr. Hellbusch came up and told us the MRI looked good! He said the results were not normal, which is to be expected after Jacob's surgery, but that there was NO EVIDENCE OF TUMOR!!!! Needless to say we were extremely relieved. We still have the results of the Bone Scan and CT Scan to get back tomorrow, but the Brain MRI was probably our biggest worry. We were so grateful for Dr. Hellbusch making a point to read Jacob's scan and find us to give us the results! I could go on and on for years with how much we love that guy! But I will spare all of you that pain and just tell you that Steve and I are so happy that at least the Brain MRI looks good. We should be able to sleep tonight - something I don't think we have done well the last week or so. When I get the results tomorrow on the rest of his scans, I will put it as a post script at the end of this message.

Jacob's Music Program was great yesterday. All the kids that we've gotten to know this year in Jacob's class just seemed so grown up and matured from the beginning of the year. I used to volunteer in Jacob's class, but have missed their growth and development for the last couple of months, so I am taken with how much they have changed. Jacob was a true ham - raising his hands and saying, "Thank you my people" between songs. You couldn't hear him, but I was reading his lips and knew that's what he was saying - such a goof! He knew more of the words to the songs than I thought he did. I don't think he had to use my "watermelon" trick. He never did understand that trick anyway. He just looked at me when I told him about it like I was crazy. I was so happy that he got to participate in the program. I looked at him up there and thought how great it was to see him there in school with all the other Kindergarteners just being a normal 6 year old boy for a while. It's things like that that I am so thankful for. I hope I always have this appreciation for the things that he and Brandon do. Yesterday when they were fighting (which they are so good at), I was thinking I love hearing that fighting sometimes because it means I still have my 2 boys! Then after a few moments, it started to drive me crazy again...but anyway, we've had a great couple of days on a lot of fronts.

Tonight Jacob's Wish Coordinators are coming over to start laying the groundwork for his Make-A-Wish trip. One of the gals was Gary's (Steve's dad) partner when he was a Wish Coordinator. Unless Jacob decides to unleash a whole new plan, he is wanting to go to Hawaii! He has been asking to go to Hawaii for 3 years. I think it all started with Little Lamb Preschool's annual "trip" to Hawaii when Jacob was in the three year old class there. I know he has specific plans for the trip. We are so grateful to the Make-A-Wish Group. It's one of those things you never want to be on the receiving end of, but it's such a wonderful part of this whole process. It will be a welcome reward for all of us when Jacob is done with treatment. I can't imagine how good it will feel to spend a week or so with all 4 of us together at the same time!

Next week is chemo #4 - our long 6 day stay - visitors more than welcome of course. We will start radiation a couple of weeks after that.....We think we can, we think we can, we think we can......luv, Kellie :~)

Tuesday, April 8, 2003 9:27 AM CDT

Hey, Everyone! Went in for blood counts yesterday and all were up. We avoided the blood transfusion and we went right from the clinic to school. This also means we get a week of reprieve from doing shots. Needless to say we are all happy about that! We've got all his scans on Wednesday (brain MRI, skull x-ray, bone scan and CT of chest and abdomen). These are biggies as his initial response to chemotherapy is very important. Lots of prayers for clear scans! As soon as I get results, I will post them on here. Thanks everyone for your support and prayers! Thanks also to Lisa Kruntorad for dinner Sat night!

Jacob has a Kindergarten program today. He has heard the songs twice! I told him he could just lip synch or do the "watermelon, watermelon" trick. He went to school today without a hat - said he just wanted to be bald today! He is doing well with going to school. He just acts like nothing ever happened and he's been there all along. It's very good mental medicine for him to be there!

We'll keep you posted! Luv, Kellie :~)

Friday, April 4, 2003 10:58 AM CST

Hi, Everybody! Big news here - Jacob lost his first tooth! It was one of the ones on the bottom. He hasn't hardly touched the thing since it became loose weeks ago, and there was no way he was going to let mom or dad give a pull. It has been hanging by a thread for a week or so and finally the new tooth coming in pushed it out. Jacob was so excited and shocked. He thought for sure it was going to hurt coming out. There is still a question as to whether he has all his permanent teeth to come in (something he inherited from his mom!), so it may be a while before anything happens up on top where the missing teeth are suspected. We welcomed the tooth fairy into our home last night and Jake was very pleased with her exchange!

Brandon had his eyes checked for a possible strabismus (lazy eye) and it is fine. He has what's called a psuedostrabismus. When the bridge of your nose is wide like his, the eyes can sometimes appear out of alignment. He had his hearing and tubes checked at the ENT (Dr. Emmanuel). The hearing was much improved and the new tubes are working. Good news all around for Brandon this week - Yeah!!!

Brandon, Jacob and I went in yesterday for Jacob's counts. Brandon is so thrilled when he gets to go up there with us - it's a pretty great playroom! Jacob's counts were higher than expected. He has an ANC of 540 (last time at this point with the odd numbered round it was 160-very low), which we were pleased and surprised by. His hemaglobin was low, so some prayers for a rising hemaglobin would be appreciated so we won't have to get a transfusion on Monday. All else looked good and we were home by 11:30. We got all his scans set up for next Wednesday - Brain MRI, Skull X-Ray, Bone Scan and CT Scan of his chest and abdomen. These tests will tell us if the cancer has spread and/or if the tumor is growing back. Needless to say, we are nervous about these tests. We should have all the results on Thursday, so as soon as I know, I will post it on the website. Prayers needed big-time for clear test results. I guess every time we do these scans we will be on pins and needles. Just the nature of the game.

No other news to report. The only thing we have planned for the weekend is getting our taxes together. Fun stuff, I know! We are one wild and crazy bunch around here! Will be back at the clinic on Monday for counts. Hopefully we'll get the all clear for stopping the shots, and Jacob will be able to hit school a couple of days next week. Have a great weekend! Kellie :~)

Monday, March 31, 2003 7:10 PM CST

Hello, All! Went in for counts this morning and Jacob's all looked good. We will continue on the Neupogen shots nightly until they fall later in the week and come back up. Dr. Abromowitch said she had been talking to Dr. Ramon(sp?), a radiation oncologist at Univ of NE Med Center, about Jacob's case and he thought they could deliver his radiation in a safer method than with conventional radiation. The big concern is that in an attempt to clear the skull bone of the cancer with radiation, we will be radiating Jacob's brain also which can have serious long term effects. So Dr. Abromowitch had been looking into centers that offered specialized radiation to minimize those effects and it looks like we will be able to stay here in Omaha to get it! That's a relief! She also said that we would try and continue chemo during the radiation. With as well as Jacob has been doing on the chemo, it's worth a try! Jacob finally showed some sign that he even had chemo by throwing up in Valentino's on Sunday when we went there for brunch. But again, he threw up and then asked for his plate to be refilled and continued to roll along without anymore nausea. I also discussed my desire to have Jacob's pathology slides sent out for a second opinion before we start radiation and Dr. Abromowitch had no problem with that. I do not expect it to come back with a different diagnosis, but just want to make sure we check and double check for piece of mind before we go any further. They will send the slides out this week. So we will do Jacob's scans in the next two weeks, go in for chemo #4, wait until Jacob's counts come back up and then start radiation. That is the plan for now as long as Jacob's counts cooperate and he stays healthy.

With Jacob's counts being high, he FINALLY got to go back to school today! He was so excited. I took him around 12:30 and then picked him up at the end of the day. He had a great time and was so glad to be back! Mrs. Parker said he did great and never seemed tired. He will go back tomorrow for a full day - he's very excited for lunch and recess! Then Wed his counts will probably be on the way down, so we will keep him home the rest of the week.

Steve always knows how to put things in perspective for me when I'm feeling down. I was having a low moment last week in the hospital and he said, "I know this isn't easy, Kellie, but if you think about it, would you want to trade places with anyone right now? Would you want to have any other family? Would you want to be anywhere else but here?" The answer is a resounding 'no' and it's true, this is right where we are supposed to be, and as hard as it is sometimes, there is no place else I'd rather be. Definitely no other husband or children I'd rather have. Now when I get down, I just think about that, "Would I want to trade with anyone else?" Nope - even though it's not what we planned for or expected, it's our life and it's a good place to be! "For I know the plans I have for you," declares the LORD, "plans to prosper you and not harm you, plans to give you hope and a future." Jeremiah 29:11

That's all for now. It was a great day with Jacob being able to go back to school and finding out that we will be able to stay in Omaha for radiation! We'll keep making tracks towards a healthy Jacob! Make it a great day! Kellie :~)

Friday, March 28, 2003 11:37 AM CST

Hi! We all got home from the hospital last night around 5:30. Jacob took a nap when we got home, had a great night's sleep and slept until 9:15 this morning! Jacob did great with this round of chemo - not even a hint of nausea or loss of appetite! We were pleasantly surprised at how well he handled it. Plus, he held still while they were putting in and taking out the needle for his port this time! What a relief that was - not having to hold him down as he screams in total panic - we certainly didn't miss that! His legs and jaw are sore this morning (bone pain-side effect from one of the chemos)and a little out of sorts, but overall he is doing well. We have had lots of tears over the meds he had to take this morning - I wish that would get easier too!

If you check out our pictures on the website today, you will see we had a very special visitor on Wednesday afternoon. Eric Crouch came to see Jacob! When he walked in with Steve and Jeff, the boys didn't quite recognize him, but then Steve said, "Would you know him if he had on a red #7 jersey?" Jacob's eyes got real big and he said, "It's Eric Crouch!" Eric was great - he played checkers and Rock-Paper-Scissors with Jake and signed jerseys for both boys. I can't say enough how nice he was. He stayed over an hour and made Jacob's day. Jacob called his teacher, Mrs. Parker, last night as he was busting at the seams to tell her. A big thank you to Coach Petito at Millard North for making it all happen! We are so appreciative to Eric for taking the time to come up - it really meant a lot to us!

Jacob had a great time with Cole Gann that visited and brought up a whole bunch of fun stuff to do! Thanks to the Gann's for making the visit and for the great art set for Jacob! Cole even got to come with us to the playroom, which was great. We got a little more time in the playroom this visit as the floor wasn't as busy the first couple of days. Brandon had a great time with Lynne, Doris and Kristin while we were gone. He had a great day on Wednesday - preschool, Kindermusic, Eric Crouch and then spent the rest of the day and that night with the Juma's - thanks, Kathy for coming to get him down at the hospital! Brandon has spent so much time with the Juma's that he calls Kathy "Kathymom"! Thanks to Jen, Debi and Amy for joining me for lunch on Thursday also! That's some good Malibu Chicken there at the cafeteria!

Jacob is planning on going back to school on Monday! He is so excited! We will go in for counts Monday morning and then he'll go to school in the afternoon. He might go Tuesday morning too. Then counts will be down, so he'll stay home the rest of the week. I'm so glad he is able to go here and there - he could really use a good dose of Kindergarten, Mrs. Parker and those kids!

Make it a great day! Luv, Kellie :~)

Friday, March 21, 2003 12:22 AM CST

Good afternoon, Everyone! All is well here at the Beresh household. Brandon is doing great after his tubes and adnoidectomy on Wed. He had a little sore throat on Wed, but was ready to go by the next day! Background noise, that I'm sure he didn't hear before the surgery b/c it was all clogged up in there, was bothersome to him the first day, but that seems to be getting better.

Jacob is feeling great! He has been playing with his little army guys A LOT this week with the war going on. He is really trying to understand the whole thing, asking questions like, "Is this war business over with yet, Mom?" and "How many guys does Sadamm have in his army, Mom? Is it just him and his sons?" We are definitely praying for our troops out there and for President Bush!

I've come to a new level of comfort with Jacob's situation. I have been so fearful of the outcome of this whole thing and the side effects from his treatment. I've been thinking here we are taking this perfectly healthy kid and making him sick or disabled with all this crap we are pouring into him to make him better. But then I got to thinking, he wasn't a healthy kid. He was a very sick little boy walking around with a time bomb in his head and we didn't even know it! How scarry is that to think that your own child is being attacked by a viscious disease and you don't even know it? We sent him to school, trapsed down to Florida with him on vacation, let him run around the soccer field and the whole time he was sick and a medical emergency waiting to happen. Talk about scarry! It almost makes me ill thinking how incredibly lucky we were that whole time! Even now with cancer being in his profile and chemo being put in his system and our lives being turned upside down, we are so much better off than this fall with Jacob being sick and us being clueless about it. At least now we are fighting it. This might be the best year of our lives - we finally know about the illness that Steve always worried would come for Jacob, we caught it before it ruined our little boy and now we have a real chance of making Jacob better. How awesome is that? With knowledge is power and now we are in the business of using that power to smoke Mr. Ewing out of his cave (thanks Pres. Bush for that quote) and knock him out of Jacob! Next time I see that chemo drip into Jacob's veins, I won't be hating it and it's effects. I will be saying, "go, chemo, go!" And as always, we'll be rooting, "GO, JACOB, GO!"

What's next? Chemo admission from Tuesday until Thursday night. After this chemo we will do his 3 month scans - MRI, CT, bone scan and I think bone marrow. Keep up the prayers!

Make it a great weekend and love up your kiddos! Kellie :~)

Tuesday, March 18, 2003 1:45 PM CST

Hello! We went in for counts yesterday morning and they were all up!!! We avoided the blood transfusion! Plus, we have a whole week's vacation from the clinic. No shots, no counts and no doctor's visits until next Tuesday, the 25th, when Jacob will go in for chemo #3. I can't believe we are up to #3 already. What a blessing that it is going so quickly and that Jacob has done so well. We went and celebrated our week's reprieve by eating at Valentino's and finally spending some Christmas money the kids had at ToysRUs. They got Teenage Mutant Ninja Turtles - they are making a comeback! Jacob has been feeling great, but has some soreness in his feet from the neupagen shots and his high white blood counts. It seems to be getting better, though. The boys went over to the Juma's this morning to play with Justin and Brianna. They had a great time!

Brandon goes in to have his tubes put back in and adnoids out tomorrow morning. He doesn't seem nervous and I'm sure he won't be as the hospital has become a second home to him as well.

Thanks again to everyone who helped with Jacob's benefit! They raised over $7000! We are so thankful to have such wonderful friends and family! Have a great week - enjoy the spring weather and make it a great day! luv, Kellie :~)

Friday, March 14, 2003 9:59 AM CST

Hey, Everyone! What an incredible night we had last night at Jacob's benefit!!! Steve and I were completely overwhelmed to say the least! We had a huge crowd - we couldn't believe the outpouring of support! A HUGE thank you to everyone who came, to those that contributed and purchased items for the raffle and auction, to those that volunteered during the event and to those that donated their time and talent to making it happen. A special thank you to the gals that spearheaded the whole thing - Amy Yarnell, Deb Fry, Laurie Lycan, Molly Betz, Laura Ekborg, Karen Kersch and Denise Parker. Wow - you ladies are amazing! We are deeply touched by your generosity and for all the time you spent in putting it together. Truely a testiment to the incredible kindness of all those involved and all those that attended. I can't even begin to tell you how much it means to Steve and I to have that kind of support. In every bad situation there is so much beauty, and last night was just one of the many expressions of that beauty we have witnessed since Jacob was first diagnosed.

Jacob was able to attend last night and he had a great time! His counts hung on just enough for him to go. His ANC was at 560, but will probably continue to drop today, so we will be confined to home for the weekend. When Jacob heard that he said, "Oh, Man, that means we can't go to any restaurants!" You'd think he didn't like his mother's cooking or something! But...we can go OUTSIDE! And it is beautiful here - up to 70 today and through the weekend! Spring is peeking around the corner! Jacob's hemaglobin was low yesterday, so we are making plans to do a blood transfusion on Monday. Hopefully it will come up by then, and we won't have to worry about it. It does give me another reason to remind you to go give blood - it is so desperately needed! Jacob is feeling great and is eating like crazy, so once again we are so thankful for his good response to the chemo. Prayers are being answered - keep them going!

Jacob got to visit his class on Tuesday and what a great visit it was! He was so scared to go - it had been a long time since he had seen most of the kids and he was going back a different boy. I told him it was something I was not bending on - he was going and that was it. I knew once he got there he would be fine. And he was. He walked into the class and they all had smiles on their faces and Jacob put up the peace sign with a huge smile and said, "Hey, Everybody!" Christy, a child-life specialist from the Oncology clinic, came too to talk about Jacob's experience and answer their questions. It was great - thanks, Christy! Of course Jacob didn't want to leave - he loves his class and teacher so much. All the kids were so supportive - what a great bunch of kids!

Well, next week brings more trips for counts and maybe a blood transfusion for Jacob. Plus, Brandon goes in to get his tubes put back in and adnoids out on Wed. Oh, Children's Hospital will be glad to have the whole Beresh family in just about everyday next week! Love up your kiddos and make it a great weekend! Kellie :~)

Sunday, March 9, 2003 10:11 PM CST

Hey, Guys! We got home today about noon. Taking the needle out of his port was as traumatic as ever, but with 4 of us holding him down, we got it done! Overall this round went pretty well. Two down, 12 more and radiation to go! Jacob did great - he never napped, never seemed tired. At times he would lose his appetite and he did throw up a couple of times, but that's it. We were pleased with how the whole week went. So many of you did so much too to make it a bearable 6 days! Thanks to all that visited. Jacob had great visits with Hannah and Bailey from his class and from Christopher from his soccer team. Christopher brought a whole back pack full of toys from his house - what a great idea - he and Jacob had a blast! Thanks to Lisa Westra who brought up lunch for Steve and I, to Libby and Jon Englebart who sent up snacks and Leggos for Jacob, to Lisa and Charlie Kurtz for the Bionicle, to Liz Larson and her mom and sis who made Jacob an awesome car quilt, to Justin Meng who made Jacob a great "Terry Tate-Office Linebacker" CD to entertain us and to Joe and Brooke Hartnett for watching Brandon, your constant visits and doing grocery shopping for us when we got home. Jessica Coen even came over from Methodist after just giving birth the day before with a game for Jacob! Thanks to the grandparents and Aunt Amy too for watching Brandon! Thanks to Jacob's teachers, Mrs. Parker and Mrs. Subchek, for coming up to the hospital and keeping Jacob's mind busy - he's starting to read and is so excited!!! All the help has been tremendous - we can't do this without all of you! We started the shots again tonight and it went the best it has yet - maybe there is hope for our little screamer! Maybe there is hope for our ears, I should say! Going in for counts for sure on Thursday and maybe before. Hopefully Jacob's will be up enough on Thursday for him to go to his benefit. It's Thursday from 5-8 at Wheeler - all are welcome to attend! Make it a great day! luv, Kellie :~)

Wednesday, March 5, 2003 8:58 PM CST

Hey! We are doing good here in the hospital - we are finishing up with day 2 here. Jacob is doing really well. He gets to feeling a little crummy about an hour after his meds, but then he is good to go the rest of the day. We have had our moments of "I just want to go home" and "Why do I have to be the one with cancer?", but overall he has been in good spirits. Dr. Hellbusch (neurosurgeon) was in this morning and thought that his skull had started regenerating and that it looked really good. There was a slight chance that would happen, so we are really pleased!

Just to let you guys know, some wonderful people have organized a benefit in Jacob's behalf on March 13th at Wheeler Elementary. There will be pizza and other goodies served along with a silent auction and raffle. You can buy tickets in advance for $5 or it's $6 at the door. If you want more info or want to buy tickets, you can e-mail Amy Yarnell at Jayarnell@cox.net. It should be a lot of fun - if Jacob's counts are good, we will bring him, otherwise Steve or I will be there at the least.

There are new pics on this website tonight - thanks Uncle Jeff! Thanks to Aunt Amy for watching Brandon today! Make it a great day everybody! Luv, Kellie :~)

Tuesday, March 4, 2003 6:01 PM CST

Hi! Here we are in our room - #620. Our phone number here is 955-3620. We got to our room at about 4:30 - so an hour earlier than last time. We had a good day in the clinic - met a great kid that Jacob played with - a 6th grader from Omaha. He is on our floor too for the week, so he and Jacob can be in the playroom together - it's always more fun to be in the playroom with a buddy. Jacob hasn't had any meds yet, just being hydrated. His meds this time take just an hour a day to administer and the rest of the time he is being hydrated and given anti-nausea meds and a med to protect his bladder. So his counts stayed steady over the weekend and we are ready to go with round #2 here. Hopefully we will have no side effects like the last time. Thanks to Donelle Underwood, Shirley Manthley and the Olberdings for dinners this past week. Thanks to Kathy Juma and the Grandpa's and Grandma's for helping with Brandon this week too - You guys are the best! Thanks to everyone planning Jacob's benefit next week (13th)at Wheeler. I cannot begin to express to everyone how grateful we are for everyone's messages and support - it's overwhelming and holding us up - thanks and keep up the prayers. You can email us while in the hospital at sberesh@yahoo.com. "Faith doesn't make things easy, it makes things possible!" Make it a good day and come visit! Kellie :~)

Thursday, February 27, 2003 9:48 PM CST

Hiho! I better watch my typos and grammar here in these updates - I have "friends" in Blair, NE that call themselves English teachers watching my every grammatic-move (yes, that's a word!). I just do those mistakes to see if you guys are reading! Ha!

Jacob is doing great. Shaved and patchy bald spotted head and all! Went in for his counts today and his ANC stayed at a steady 3700. All his counts were in the normal range and all is status quo. Hopefully things will stay that way for the weekend so we can get in for chemo #2 on Tuesday the 4th. We will be there until Sunday, the 9th. If you haven't figured that out, that's 6 days in the hospital with only 1- 45 minute pass to the playroom a day! So, if you are healthy, please come visit us!!! I know Jacob would LOVE to see his classmates, so feel free to visit! He misses his buddies at school so, so much! He shed a couple tears over it the other night. I think starting with the home-school teacher, Mrs. Sobczak (very nice teacher!), made him realize he's not going back on a regular basis anytime soon. Mrs. Sobczak will come three days a week for an hour and even comes up to the hospital. Jacob will be able to go to school on days his counts are up and he feels good here and there, but it will be nice to have the regularity of Mrs. Sobczak and to have her on those long days in the hospital. Mrs. Parker and her meet once a week to plan for what Jacob will be doing. Plus Mrs. Parker continues to give us lots of library books and other interesting activities to work on -we love her! We plan to have a gal from Child Life at Children's come to Jacob's class mid-March to come talk to the kids - hopefully Jacob's counts will be up and he can come too! After spring break, we will have him go to school when he can. I know he will love hanging out with his "chums" again!

Happy Birthday to my baby boy, Brandon - he turns 4 today! What a good brother he is..."Don't cry Jacob," he said when Jacob was sad about missing his buddies at school. He's a little sweetie for sure!
Make it a good day! luv, Kellie

Monday, February 24, 2003 11:12 PM CST

Hey, Everybody! First of all, I have gotten a lot of comments about Jacob's Iowa shirt he is sporting in the pics. I know, I know being true blue Huskers, it's almost sacreligious having our son wear that. But we are forever indebted to the University of Iowa and a certain Dr. Chaloupka that works there that saved Jacob's life with the Embolization Procedure. Know that is the ONLY reason he has that shirt on and we still bleed Husker Red in this house - I know some of you were worried!

What a great day for Jacob! We went in this morning for his blood counts. Now remember that his counts we super low on Thursday (white blood cells=1000), so we spent the entire weekend in the house. We did it without anyone losing a limb, though, so we were pretty proud! Jacob outdid himself today and his WBC count went up to 34,000! His pediatric oncologist was so pleased. She called him "amazing"! He even gained a pound since last week - obviously his appetite not affected by the chemo, and she thought his scar on his head looked incredible! I was so darn happy! I told her I think Jacob's body actually liked the chemo. Ha! We have now coined him our "Little Rubber Ball". You can just keep throwing him up against a wall and he bounces right back! So we celebrated the end of this round of pergatory and went out for lunch and then took my car in for an oil change at Walmart! Jacob's friend from school, Bailey, came over after that and she, Jacob and Brandon had a grand ole' time together. It was obvious by this afternoon that Jacob's hair was making it's big exit. He was delighting in pulling his hair out in big clumps. So much so that he managed to make a huge bald spot in the back of his head. When I asked him where he deposited all the hair, he pulled a pillow off of the couch and whala - a big hair depository was revealed! So we took him tonight to have his head shaved. He was a little nervous getting his hair cut because of the clipper meeting up with his scar, but he did great. Of course Brandon had to have his haircut too. Then we went to Valentino's to eat tonight and by the time we had left, Jacob had told all the waitresses and customers all about his brain tumor, his cancer and chemo and showed off his bald head. He was truely delighted and happy about his hair falling out. He kept saying, "now I look like Josh. Finally I look like Josh!" (Liz Larson's son who is one of his buddies up at the oncology clinic) But the best part of the night was.....NO SHOTS! We have a two week reprieve from doing the shots as his counts are good to go for this week and next week is chemo. We go back in Thursday for a blood count to check on his platelets as they were running a little low, so go give some blood just in case we have to take a pint or two this week. We meet tomorrow to get his home school stuff started and Jacob is really looking forward to that.

We were very saddened this weekend by the death of our neighbor and dear friend, Peggy Luther. She was 36 and the mother of 3. She fought an incredible battle last year with lung cancer and was doing great since her treatment ended and all her scans were clear. An infection of some sort took over her body and in less than a week, she was gone. She was such an inspiration to our family and truely a beautiful and strong person. I will miss hanging out with her in the driveway, watching our kids play. She came to see Jacob right after his surgery when he was in ICU. I looked at her that day and thought what an incredible person she was and felt like her words of encouragement were truely from a higher place. Please pray for her kids, Jake, Zach and Alexa and her husband Greg. Please hug your own kids tighter tonight and feel how blessed we are to have each and every day God gives us!

Will keep you updated and make it a good day!
luv, Kellie :~)

Monday, February 24, 2003 11:12 PM CST

Hey, Everybody! What a great day for Jacob! We went in this morning for his blood counts. Now remember that his counts we super low on Thursday (white blood cells=1000), so we spent the entire weekend in the house. We did it without anyone losing a limb, though, so we were pretty proud! Jacob outdid himself today and his WBC count went up to 34,000! His pediatric oncologist was so pleased. She called him "amazing"! He even gained a pound since last week - obviously his appetite not affected by the chemo, and she thought his scar on his head looked incredible! I was so darn happy! I told her I think Jacob's body actually liked the chemo. Ha! We have now coined him our "Little Rubber Ball". You can just keep throwing him up against a wall and he bounces right back! So we celebrated the end of this round of pergatory and went out for lunch and then took my car in for an oil change at Walmart! Jacob's friend from school, Bailey, came over after that and she, Jacob and Brandon had a grand ole' time together. It was obvious by this afternoon that Jacob's hair was making it's big exit. He was delighting in pulling his hair out in big clumps. So much so that he managed to make a huge bald spot in the back of his head. When I asked him where he deposited all the hair, he pulled a pillow off of the couch and whala - a big hair depository was revealed! So we took him tonight to have his head shaved. He was a little nervous getting his hair cut because of the clipper meeting up with his scar, but he did great. Of course Brandon had to have his haircut too. Then we went to Valentino's to eat tonight and by the time we had left, Jacob had told all the waitresses and customers all about his brain tumor, his cancer and chemo and showed off his bald head. He was truely delighted and happy about his hair falling out. He kept saying, "now I look like Josh. Finally I look like Josh!" (Liz Larson's son who is one of his buddies up at the oncology clinic) But the best part of the night was.....NO SHOTS! We have a two week reprieve from doing the shots as his counts are good to go for this week and next week is chemo. We go back in Thursday for a blood count to check on his platelets as they were running a little low, so go give some blood just in case we have to take a pint or two this week. We meet tomorrow to get his home school stuff started and Jacob is really looking forward to that.

We were very saddened this weekend by the death of our neighbor and dear friend, Peggy Luther. She was 36 and the mother of 3. She fought an incredible battle last year with lung cancer and was doing great since her treatment ended and all her scans were clear. An infection of some sort took over her body and in less than a week, she was gone. She was such an inspiration to our family and truely a beautiful and strong person. I will miss hangin out with her in the driveway, watching our kids play. She came to see Jacob right after his surgery when he was in ICU. I looked at her that day and thought what an incredible person she was and felt like her words of encouragement were truely from a higher place. Please pray for her kids, Jake, Zach and Alexa and her husband Greg. Please hug your own kids tighter tonight and feel how blessed we are to have each and every day God gives us!

Will keep you updated and make it a good day!
luv, Kellie :~)

Friday, February 21, 2003 10:02 PM CST

All is good here today. Uneventful, just the way we like. Just wanted to let you know we put on three new photos today. Two of them are Jacob in the hospital for his first chemo treatment and one of Brandon in his hospital provided jammies! Check them out and pray for no fevers and higher blood counts on Monday! Thanks to Sue Johannes for dinner tonight and to Chandra Timmons for dinner on Wed. You guys are great! Make it a good weekend!
luv, Kellie

Thursday, February 20, 2003 4:05 PM CST

Hey, Everyone! Went in for Jacob's counts today and he has hit rock bottom - his ANC went to 160 - that's really low. When we went in for his 1st chemo admission, his ANC was 9500! His White blood cells were at 1,000 today - they were at 12,000 on Monday. So I guess the chemo is working. Hopefully they are on the upswing now. He did seem a little peekid yesterday and needed a couple of rest times. He seems better today, so hopefully we are on the upswing. It was a little reality check for me today when they gave me his counts. I'm sure when he loses his hair that will be another reality giving day too. That should happen in another week or two. Jacob did get a loose tooth! He has been telling people for months that he has a loose one. Before every surgery and test that he would have anesthesia,the nurse would ask if he had any loose teeth, he would say, "oh yes,I have a couple of them!" Now he really does, but he's not too excited about wiggling it. I think he's had it with any more pain at this point. On the way to the hospital today, he said, "Mom, I wish all of this was just a dream." Oh don't we all, Jakieboy! Don't we all! I told him in a year once all this is over with and we are on his Make a Wish trip, that's exactly what it will seem like; a really bad dream. His low blood counts mean we will be hanging around here at home this weekend. If he runs a fever, it will be an automatic couple day stay at the hospital. Pray for no fever and that the counts are back up on Monday.

Jacob and Brandon are both feeling good,and we went the whole day yesterday without one trip to Children's! I'm sure the place was reeling without the Beresh's being there. They did go outside to enjoy this beautiful warm and sunny day here in Omaha(53 degrees!!!), but are a little bummed about the snow fading so quickly. Don't worry, Boys, if you don't like the weather in Nebraska, wait 5 minutes! A big hello to Jacob's class and other kiddos at Wheeler Elementary and to the great teacher, Mrs. Parker! Jacob misses you all so, so much!

Thanks, Everyone, for the great notes and inspiring stories - keep them coming. I love hearing stories of kids beating cancer! Have a great day and make it a good one! luv, Kellie :~)

Tuesday, February 18, 2003 5:35 PM CST

Hey, Everyone!!! Good news, good news! Dr. Harrison (our awesome pediatrician) wanted to see us Monday afternoon after I called and told him what happened on Sunday to check on Brandon and probably mom! If you don't know what happened on Sun to Brandon, see the past journal entries. Anyway, we decided to do a brain MRI on Brandon today to make sure that it was indeed just a febrile seizure. He thought that it was, but wanted to do a double check for everyone's piece of mind. I agreed wholeheartedly! So we went this afternoon and Brandon did great. They all had their doubts that a 3 year old could sit still for the MRI, but I thought he could do it as long as he could watch a movie and know I was there. We had to poke his poor little body 3 times before they got an IV to work, but he was a trooper. He sat still through the whole thing! Dr. Harrison's office called this afternoon and said that the scan was all clear and everything looked ok. Nothing in there but brain and a big spot of goofiness! Thank God!!! Needless to say Steve and I are very relieved. Jacob is doing great and spent time outside today with our bbsitter, Kristin, making a snowman while we were at the hospital. He made an obstacle course in his room too and has a sign up that says, "Obstacle Course and Hold on to Your Horses - Free Refreshments!" Some of the "refreshments" are even smashed into the floor - yummm! Dad helped with the spelling! Jacob's blood count was good on Monday and we saw Dr. Abromowitch (the oncologist)and she was very pleased with how well he was doing. Will go back on Thursday for another blood count - love those finger pokes! So all of us are back to "normal" here this afternoon with our hearts and minds a lot less heavy. Steve and I are even going to step out tonight for a jewelry meeting - will be nice to be with the group again! We'll keep you updated and we will try and stay away from ambulances! luv, Kellie :~)

Sunday, February 16, 2003 8:42 PM CST

Ok, are you guys sitting down? Had to take an ambulance ride down to Children's today! Not with Jacob, but with BRANDON! Jacob has had a great day today - high spirits, no pain or tummy ache and doing great. Big plans to watch the Daytona 500 and play out in the snow after that - shaping up to be a great day! My Dad and Lynne came over about 1:30 and Steve and I decided to head to Target together to do some much needed shopping and actually get to spend a couple hours alone - even just going to Target sounded somehow romantic at this point! So we are coming home and my Dad calls in a panic and says something is wrong with Brandon. We speed home to find Brandon passed out on the floor - hardly conscious, white as a ghost - Dad and Lynne say he fell asleep when Lynne was holding him and then he had a seizure! Arms and legs convulsing, drooling and eyes rolling up into his head! I called 911 immediately and the fire dept was here in 2 minutes. They gave him some oxygen and said he was stable and the rescue squad got here in another 3 mintues. They loaded him up and said it was probably a febrile (sp?) seizure. I rode with him to Children's in the ambulance and I couldn't believe I was in that situation. I knew he was ok and it was probably what they said it was, but I was panicked too - does he have a tumor too? Maybe neither of the boys are mine to keep - running from complete panic thoughts like those to calm - pretty much manic. He was out the whole way to the hospital, but his vitals were good - they didn't have the sirens going, so I thought that was a very good sign. We got to the ER and he woke up some and repsonded appropriately to them and they explained that it was a seizure that younger children can have as a response to a sudden rise in temperature that their immature brains can't handle well. It happens to up to 10% of all children at some point (we just can't be in that 90% can we?) and he would be fine. He does have a croupy cough and they tried to look in his ears, but they were so filled with wax, they couldn't see the eardrum. The Dr. tried to send us home with just croup instructions, but I made him clean out the wax and look at his eardrum, b/c I knew he had an ear infection too. I think the Dr. was aggrivated with me, but of course, he had an infection. So we got our presecription and some hospital jammies to go home in (the 911 gal told us to remove his clothing)and we went home. Can you belive this? I guess it was just too quiet of a day here at the Beresh household. Brandon didn't want to be outdone by Jacob - he just had to have one of those free stuffed animals from the hospital himself! So I will talk to Dr. Harrison tomorrow about if we need to check on any other causes for the seizure, etc. We are going to the ENT Dr. for Brandon on the 28th to talk about putting his tubes back in. Needless to say now that he is in that 10% that can seize with a fever, I think putting the tubes back in and AVOIDING a fever all together sounds like a plan to me. I'm sure the ENT will agree. We have to keep Daddy and Mommy sane, right? So we just did Jacob's nightly shot which went much better than last night (no threats of having to take him to the hospital and spending the night there to get his shot). Still lots of screaming, but at least he held still. Making progress and the stickers are motivating! Jacob has had a great day barring the part where he was worried sick about Brandon. So thank God for that and thank God for Brandon being back to himself tonight. To the Oncology Clinic tomorrow with Jacob for blood counts and to see the doctor. Pray for a quiet night in this Beresh Household! Pray for those chemo drugs to beat Mr. Ewing in the "rear"(Jacob's new favorite word for his posterior)! Someday I'm sure we will all be sitting around with the boys' perfect fiances that I helped them pick out :~), drinking lemonade and having popcorn, laughing about when the boys were 6 and 3 and all this crap happened! I will welcome that laughter!

Also, a little plug here, very subtle of course - GET OFF YOUR BUNS AND GO GIVE BLOOD!!!!! As a long time blood donor, I never even realized how much of it goes to people in cancer treatment - tons of it is needed just to keep all these kiddos going on a regular basis. Jacob has already taken so much of it with his surgery; and I know this year he will probably be dipping into it now and then, so please, please go give! It is needed so much. If you are chicken, think of Jacob and what he goes through everyday and then go for it! There is a donation site (a very nice one too - lots of good munchies there) by the Hyvee at 132nd and Dodge - drop in or call for an appointment now - they'll be glad to see you!

We'll keep you updated....Make it a good day! luv, Kellie

Friday, February 14, 2003 1:21 PM CST

Hey, Everyone - Kellie here. Uncle Jeff and Steve have been busy this Valentine's Morning putting pictures on this website - check them out. They are some from our trip for the Embolization in Iowa.
Jacob woke up this morning feeling good. Fought with us on taking his anti-nausea medicine (we started a sticker chart to earn Gameboy Games - hopefully that will help with the shots and the meds)and then played, ate a big bunch of noodles, took a bath with Brandon and is now napping. He seems to be doing very well. Sometimes he complains of a stomach ache, but he only threw up the one time in the hospital and hasn't seemed close to it since. We got home last night from the hospital about 8:30 and Laura and Ed Burchette had pizza here waiting for us, so that was great. Thanks everyone so much for the meals - I don't think we would eat otherwise. So tonight we start our nightly shots (they help with white cell production) and he continues on the Zophran (anti-nausea) and he's on some powder we put in his juice to help with constipation. He has had some jaw pain which is a side effect from the Vincristine (one of his chemos). Overall we are very pleased with how the first round of chemo went. One down, 13 more and radiation to go! We go for his next round of chemo three weeks from this past Tuesday and that will be a five day stay. Less side effects expected from that one I guess. We will be needing some visitors to survive that lenghth of stay, so if you're healthy, come on up. I know Jacob would love to see some of his classmates and buddies. Even when we are home, please call and if he's feeling good and you're healthy, we can set something up. I know he'd love to talk to some of his buddies on the phone too, so if you can't visit, please feel free to call. We go in Monday for blood counts and to see the doctor. We will always be at the clinic on Mondays and Thursdays for blood counts. That's all for now. Thanks again, everyone, for all your support. Will keep you updated! Kellie :~)

Friday, February 14, 2003 10:05 AM CST

Just a quick note to let you know that it went well and that we did come home thursday night at about 8:30 pm. I am sure Kellie will give you a must better update a little later. Steve

Tueday, February 11, 2003 11:08 PM CST

Hello Everyone! We had a long day at the Oncology Clinic today. We arrived around 10am and did not get to a room until around 5pm. His treatment started about 7:30pm and will run continuously for 48 hours, so the earliest he can get out is thurs evening, but it maybe friday am. Other than that the day was good, he entertained himself in the clinic all day in their great playroom. His spirits are up and he feels good. He does go to the bathroom alot though, as they give him alot of fluids through his IV. Hopefully, we will get the pictures on here soon. Thanks for visiting. We'll write soon. The Beresh's

Monday, February 10, 2003 2:53 PM CST

Let's start by giving you a quick history of Jacob. Jacob is a Kindergartner here in Omaha, Nebraska (go Huskers!) that loves sports, trucks, construction and telling long and funny stories! Ask anyone who knows him and they will tell you that this kid is either going to be an incredible salesman or a politician - he thrives on socializing! He knows how to work a room!
Right after Christmas of 2002, Jacob started complaining of short headaches 3-4 times a week for a couple of weeks. Because his Daddy was concerned, we made an appointment with our pediatrician, Dr. Fran Harrison. Being the great doctor he is, instead of sending us home and telling us it was probably the flu, he sent Jacob over for an MRI at Children's Hospital here in Omaha. Even before the test was over, they called Steve and I out to talk to Dr. Harrison who told us that they found a brain tumor. Jacob's tumor was behind his right ear, about 6 cm by 6 cm by 3cm. It was pressing on his cerebellum and into his occipital lobe of his brain. The problem with Jacob's tumor was that it had an incredible blood supply to it. It was filled with hundreds of arteries and veins that would make surgery very risky due to the chance for great blood loss. Jacob's great neurosurgeon, Dr. Leslie Hellbusch, decided to consult some other doctors to see if an Embolization Procedure was possible to help eliminate some of the blood supply to the tumor to make surgery possible. He decided to send us to the University of Iowa Hospital in Iowa City, IA to Dr. Chaloupka, an Intervention Neuro Radiologist. Dr. Chaloupka felt that Jacob was a good candidate for an Embolization and that he could really help us. Dr. Hellbusch and Dr. Chaloupka and their staffs worked together and arranged everything for our trip to Iowa City. The Univ. of Iowa Hospital is a huge facility (a mile and a quarter long, block and a half wide and 8 or 9 stories - who knew?) that specializes in many things with one of them being nuerosurgery and intervention radiology. Initial thoughts were that the tumor was a Meningioma (tumor originating from the lining of the brain)with some chance of it also being a Sarcoma. We had no idea if it was malignant or benign.
We arrived in Iowa City on January 22nd - Jacob's Birthday - and had the procedure done on the 23rd. It took 5 hours, but it was a huge success! Dr. Chaloupka thought we had eliminated 90-95% of the blood supply to the tumor. We then returned to Omaha on Jan 25th and prepared for surgery on the 28th. In the meantime, Jacob became very sick. He lost all his color, felt pain, weakness, nausea and got an ear infection! Having that tumor dying in his head had really thrown his body for a loop!
He went into surgery on the 28th at around 11:30 and three and a half hours later, Dr. Hellbusch came out and said Jacob was "extremely stable". It had been a hard sugery - Jacob lost 8 units of blood (More than 2 and a half times his total blood volume!)- they said they were pumping it in as fast as they could! He made it and afterwards, Steve and I realized what a miracle it was for Jacob to have made it through the surgery. Both Dr. Chaloupka and Dr. Hellbusch and the rest of the doctors and nurses had saved our boy! No matter what the pathology results were, we wanted to always remember the joy we felt with our realization that it was such a miracle for Jacob to have even gotten that far! Jacob's recovery was amazing - surgery was Tues. and we came home on Sat.!
That Saturday, we learned they had made a final diagnosis of PNET of the Ewing's Sarcoma family. It was indeed bone cancer. We did tests the following week and they found no evidence that it has metasticized (thank God!).
So today is Monday and tomorrow Jacob goes in for his first chemotherapy treatment. We will get out on Thursday. We are anxious and hopeful that all will go well and Jacob will tolerate the chemo. We will keep you updated! Thanks to everyone for all your love and support. Please sign the guest book and/or e-mail us regularly! We couldn't do any of this without all of our great family and incredible friends! Kellie :~)

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