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Thursday, December 6, 2007 8:09 AM CST Happy birthday my darling Jeffrey! Gosh, it's hard to stop the wondering "what if's?", but I promise to do my best in remembering "what was".
It was a pretty amazing "what was"! From the moment you were born, I knew you were special and you continued (and still continue) to prove that to me. Your grandparents enforced that feeling, because you were the first (on both sides). The first grandchild is always special (even though grandparents will never admit it). You made it easy.
Sometimes my mind is like a video recorder. It's like I can play back all the wonderful memories you gave to me. I replay the moment in the hospital when you were first born and wouldn't stop crying. I picked you up and sat in a rocking chair, then told you if you would stop crying, I promised to be the best mom ever. You stopped crying instantly!. God, I so hope I held up my end of the bargain. From then on, you were my inspiration and my life.
I can replay all of the first's. You talking, walking, starting school, sports, friendships, jobs, and dating. You gave me so many gifts. But, then again, that was your nature....to give. I miss you and love you so much.
Happy Birthday Jeffrey, my heart is with you today and every day.
Love, Mom
Thursday, October 4, 2007 11:27 AM CDT Jeffrey would be so excited that the Tribe clinched the Division and are going to the playoffs. Somehow, I think he had something to do with that. Maybe he'll use some pull and they'll go all the way!
It's hard to believe that it's been almost a year since we've last seen Jeffrey's smiling face. I've imagined it everyday, so I guess that's why it doesn't seem like a whole year.
As much as he enjoyed and loved spring because of all the rebirth and the beginning of baseball season, he really loved the fall. He loved the colors and the smell in the air and, for the most part, the Tribe playing post-season ball. Not to mention the beginning of football season. Fall always seemed like the time Jeffrey would start to get better. Physically, the chemo would be kickin' his butt, but mentally, he would be rejuvinated and it wouldn't matter how he felt physically. He was so much more active and full of life in the fall. It's seems like a cruel irony that his life ended in the fall. It's the time of year that mosts reminds me of his presence only to realize that I'll never physically feel his presence.
All I can say is the Tribe BETTER win!!!
Take care and thank you for all of your support.
Wednesday, August 15, 2007 11:17 AM CDT Life sometimes seems to get away from me. Before I know it, months have passed and I wonder what the heck happened.
Our family ventured to the Outer Banks for vacation back in July. We were pleasantly surprised that our granddaughter Olivia was able to make the trip. For reasons that will need a few pages, she was not scheduled to join us on vacation this year. I was pretty bummed about that seeing that Jeffrey was not going to be there either. But at the last minute, she was able to join us and I couldn't have been happier.
Overall, the vacation was relaxing. We didn't plan to do much other than hang at the beach. That was pretty much all we did. As some of you know, I've been going to nursing school. I had four tests to make up the day I returned, so my time was spent studying on the beach. Which was just as well. My last memories of the beach were with Jeffrey.
The family did venture on dinner excursions and we all went on a boat trip and saw dolphins, and we drove on the beach to see the wild horses. The guys all loved this adventure because they got to go baha-in on the beach with their 4wd trucks.
Alex made us a wonderful dinner again this year. He gave us the option of cajun chicken alfredo, steak or salmon. Stating those options that way does not do what Alex did to those options any justice. For instance, I had the salmon, which was cooked to perfection, and topped with a delicious guacomole salsa and served with steamed asparagus and seasoned red skin potatoes. He also prepared a grilled shrimp appetizer with a yummy dipping sauce and served salad with homemade dressing. Those who chose the steak and chicken alfredo were equally pleased. Alex, you are our TOP CHEF!!!! If you run into Alex, please subtly encourage him to return to culinary school!
Alex moved back home the week after we returned from vacation. That coincided with me studying for finals, so it was a little stressful, but I survived both. Steven returned to his mom's.
I have a month off from school. Although, that just means I have to work at home. I've cleaned the basement, washed floors, walls, dusted, vacuummed...well you name it and I've done it. The one thing that I haven't done is Jeffrey's room. I'm not ready for that yet. I had it as one of my goals while I'm off, but I think I may have to nix it for now. There's way to many memories in his room. Quite frankly, I don't know how to make it something other than his room.
Please remember to visit Jeff's Ballpark Site at www.newbeginnings.org. Also, please pray for Miles and his family as he prepares to join Jeffrey.
Connie
Monday, July 9, 2007 7:50 AM CDT It's hard to believe that it's been over 8 months since Jeff has been gone. I would think that as time goes by the pain would ease, but it seems to get worse.
I was fortunate in that not only was Jeffrey my son, he was my best friend. We shared a special bond that was a gift from God. HE was a gift from God!
That fact is kind of a double-edged sword. It's that fact that gets me through the pain, because I consider myself pretty lucky to have had such a wonderful gift; but that fact also causes me pain in realizing that my gift is gone. I will never be able to hear him talk or laugh, or feel his hugs or smell him. It's so permanent and I hate that thought.
They say to take it a day at a time, but really you have to take it an hour at a time and work your way up to a day. I MISS HIM.
Our family is gearing up for vacation. Approximately, 25 of us are going to the Outer Banks. What's good is that we'll all be together in one house. What's bad is that we'll all be togther in one house and Jeffrey will not be there.
On a lighter note, I just received word that NEWBEginning, Inc. received it's 501c3 status so we can officially receive donations on our own. If you wish to donate or want more information regarding Jeffrey, please visit www.newbeginning.org.
May God bless all those who have lost a child and those who are fighting to keep them.
Tuesday, June 5, 2007 8:31 PM CDT I've started writing an update in this journal several times and each time I found it harder to write.
I miss Jeffrey so much. It was very evident this past weekend as we participated in Relay For Life.
Jeffrey WAS Relay! Twinsburg dedicated the event to him this year. To kick off the luminary ceremony, they instructed us (the parents) to complete the lighting of the HOPE lanterns in the bleachers as they played 3 of Jeff's favorite songs: "It's a Great Day to be Alive", "Live Like You Were Dying", and "Seasons of Love". My heart was officially broken. It was very overwhelming.
The past 4 years have pretty much gone like clockwork. Jeffrey was diagnosed or would relapse, then he would rally his troups and then we Relayed. Even though his troups rallied and Relayed, there was a tremendous void in the event. It will take me some time to recuperate emotionally from this weekend.
I want to Thank Relay For Life of Twinsburg/Macedonia for dedicating the Relay to Jeff. I also want to thank all of Jeff's friends for coming out to show their support. You are all wonderful human beings and I see a piece of Jeff in each one of you.
I also want to thank everyone for continuing to support NEWBEginning in their fundraising efforts. Please visit the new website at www.newbeginning.org.
Please continue to keep Miles and Joe in your prayers as they continue their fight against rhabdo.
Connie
Wednesday, April 25, 2007 11:13 AM CDT A few weeks after Jeff died, I was sleeping and dreaming some strange dream, when all of the sudden, out of nowhere, I hear "Hi Momma". It was Jeff's voice and it was kind of muffled like it broke through some kind of time-space barrier. I immediately opened my eyes and realized I must have been dreaming, but that contact seemed so real. I know it sounds strange and I'd be the first to laugh at someone who told me a similar story, but I know Jeff was letting me know he was ok. I guess I just wanted to pass that along.
This month has been pretty hectic. We had the Run4Research which was a big success. We were pleased by the turnout despite the absolutely horrible weather. Thank you Mandy for your hard work!
At the race, Jeff's friends presented us with a replica "Paver" that has been permanently embedded at the new Heritage Park at Jacob's Field. The paver is inscribed "WE SPELL HERO J-E-F-F! OUR FRIEND, OUR ANGEL, WE LOVE YOU NEWBE!" It was such a wonderfully thoughtful gift and now Jeff will always be an "Angel in the Outfield" for the Tribe.
Jeff was so blessed to have such great friends and I feel blessed to have them in my life as well.
Jeffrey was recognized by the United Way of Summit County for his volunteerism and honored in a ceremony on the 19th. At the end of the ceremony, a man whom I never met, came up to me with tears in his eyes and told me what a remarkable young man Jeff was and then gave me a hug. In all the choas at the end of the ceremony, and because I was overwhelmed by his expression of emotion toward my son, I never go to asked him his name or if and how he knew Jeff. Then I realized, Jeff touched so many people in his short life, I will never know just how many. This man was just a representative of all of those people.
We were saddened to lose a rhabdo friend this month. Michael Billington passed away on the 12th after his 22-month battle. Jeff and I got to meet Michael and his family a couple of times. Michael will be truly missed. Please keep his family in your prayers as I know this is an extremely difficult time for them.
Also, another rhabdo friend - Miles Levin has been making the news. Miles is an extremely articulate 18 year-old. His writings make it hard to not want to tune in for the next episode. He was recently featured in a metro Detroit newspaper and yesterday he did a radio interview. Now CNN wants to do his story. If you have an opportunity, check out his website www.carepages.com/mileslevin. Also, please keep him in your prayers.
Thursday, April 5, 2007 5:28 PM CDT Only in Cleveland can you have an 80 degree day and 2 days later have 6 inches of snow! If only we could have that 80 degree day tomorrow for the Indian's home opener. It is hard to believe that we'll be going without Jeff. It's been a tradition to take the boys out to the opener every year. I know that memories of past home openers will be present in my mind as we watch our Tribe. I know it will be difficult to not want to turn to Jeff to get his reaction on a play. I know that he will be watching from above and hopefully helping them win. He'll be my "angel in the outfield".
Jeff has been gone for a little over 5 months. They say that time heals all wounds, but I feel as though my wound is as fresh as the day he died. Tomorrow will probably feel like someone ripped the bandaged from heart. My solace is that my family will be there to help stop the bleeding. His brothers provide remnants of him in their looks and actions.
On the 24th, Jeff was honored with the Courageous Kid award from the Cleveland Clinic Children's Hospital. It was a wonderful and emotional evening. His Oncologist presented the award and started crying, so of course, that started a chain reaction. We are extremely happy and honored that she agreed to be on the Board for NEWBEginning. Thanks Dr. Burke!!! You're amazing.
I want to also thank Mavis Winkles in Twinsburg and Independence for their fundraising efforts in the month of March. Your support means so much to us and the shamrocks were GREAT!
Saturday will be the Run4Research at the Twinsburg Fitness Center at 9am to help raise money for NEWBEginning. If you're in the area, please join us.
Jeff's friends have been awesome in helping to keep his legacy alive. They work so hard every week to help make NEWBEginning successful. People say to have one special friend in your life is a blessing. Jeff has so many special blessings and I love them all.
Thanks for checking in and continuing to leave your messages. They mean so much to me.
One last note, there are 3 young men, similar to Jeff in age, that are battling the same disease. Each of them have taken some pretty hard hits with regard to their prognosis recently. Please add Michael Billington, Miles Levin and Joe to your prayers.
Thank you.
Connie
GO TRIBE!
Friday, March 9, 2007 8:44 AM CST It's becoming increasingly difficult to continue to remember to update this page. It seemed easier when I was updating on Jeff. For the past four years, we received inquiries as to how he was doing. He was our main focus. Now we all seem busy trying to catch up on lives we put on hold.
With the approach of baseball season, Jeff's charity is in full swing. We have many events planned and we are working on updating the website to make it more user friendly.
Last weekend, the Greeks at Jeff's alma mater - Kent State held a fundraiser which raised over $10,000. It was such a wonderful event and I sincerely thank the fraternities and sororities for selecting Jeff's charity this year. Life is not as easy without Jeff around, but we are managing by keeping his dream alive.
Jeffrey will be honored on March 24 as a winner of the Cleveland Clinic's Childrens Hospital Courageous Kids award. The Clinic is holding a blacktie event where we will accept the award. We would like to thank Dr. Burke for her nomination of Jeff. I think Dr. Burke and the entire Peds Onc. team also deserve awards for their compassionate care of Jeffrey during his illness.
I would ask that you continue to support Jeff's Ball Park Tour. Everyone has been so wonderful, thusfar, and your involvement means the world to our family. Thank you.
Saturday, February 3, 2007 4:31 PM CST It's been some time since I've updated and some of you have been giving me slack.
We are all doing well. Sometimes, it's just easier to deal when you don't deal. I've been trying to keep myself busy (sometimes more successfully than others). It helps to fill my thoughts with other things.
I sure miss Jeff. I still talk to him everyday, however, I just wish I could hear his voice or his laugh; feel his hugs or just crawl in bed with him again.
Alex (Jeff's brother) recently lost his job, so it's been somewhat stressful (for ALL of us). I know losing his brother has been hard for him, to say the least. I know he's hurting and it doesn't help his motivation to look for a job. I ask that you please keep him in your prayers.
We are still on our quest to raise $2 million. We've got several fund raisers coming up, we hope will really get the contributions flowing in. You can visit www.jeffsballparktour.com to see a schedule of events.
I hope everyone is doing well. Please keep everyone suffering from disease in your prayers, especially those dealing with cancer, specifically those dealing with rhabdo.
Thank you.
Tuesday, January 2, 2007 8:06 PM CST Happy New Year to all of you!
These have been such busy times. We had both Christmas Eve and Christmas Day at our house. We decided to try and keep as busy as possible and what better way then to cook and clean for days. It was fun and I enjoyed being surrounded by all the family.
My father and my nephew and niece all gave me a present for Jeff - a monetary donation to his Ballpark Tour. I was beside myself with pride at their willingness to give something to Jeffrey for Christmas.
New Years Eve was spent at the Alex and Steven's apartment. We had fun playing games and ringing in the New Year. It was the first time in about 5 years that we actually went out for New Years. Usually, we have New Years eve at our house with all the kids, but Steven had to work early on New Years day so we went there. I'm glad we did.
Jeff's friends continue to stop over and call. They are all pitching in to help with Jeff's Ballpark Tour. There is a benefit concert on January 12th at the Agora Ballroom in Cleveland. You can find out more about that on Jeffstock.com. There is also a 10k Run planned and other fund raisers in the works. We are stepping up the efforts now to reach his goal of $2 million.
I miss Jeff every minute of every day, but I know he's watching over all of us.
Thank you for checking in on us and have a blessed New Year.
Friday, December 15, 2006 6:34 PM CST This month has been extremely busy, which is a very good thing. Before, I go into all that's happened this month, I want to Thank all those that donated to Jeff's Ballpark Tour for his birthday. It was so very thoughtful of you.
The month started out on a pretty emotional note. My cousin Michelle was diagnosed with bile duct cancer. I got that awful pit in my stomach where it feels like I swallowed my heart. She needs to have some pretty invasive surgery, however, her doctor is allowing her to postpone the procedure until after the holidays. Please keep Michelle and her family in your prayers.
Jeffrey's birthday was on the 6th and what I thought would be a pretty emotional day, turned out to be pretty wonderful.
While Jeff was on his tour, he had collected memorabilia and free giveaways from the various ballparks. His intent was to donate this collection to the Children's Hospital at the Cleveland Clinic, specifically S20. So on Wednesday, I baked a cake and Alex, Steven and Jeff's friend Kelly met Jeff's Dad at S20 and brought the goodies.
It was so nice to see all of the nurses and doctors again. We hadn't seen them since the beginning of October. I know that really doesn't seem like a long time; but when you see these people at least a week of every month, going more than a month without seeing them, seems like forever. Afterwards, the kids and I went to lunch and then went to the cemetary to sing "Happy Birthday".
Later in the evening, Jeff's friends called and asked us to go to dinner. So Stewart and I joined them for dinner. It was really nice to be with them.
Thursday, Jeff was presented with the "Person of the Year" award from Twinsburg's Chamber of Commerce. It was a wonderful luncheon with a presentation by the THS Showchoir. When they presented the award and the Mayor's Proclaimations, the audience gave Jeff a standing ovation. It was such an amazing tribute to our son.
On Friday, Jeff's friends through a "birthday party" for him at a small bar and grill here in Twinsburg. There were probably about 40 people there celebrating Jeff's life. It was fun to hear Jeff stories all night. A couple of Jeff's friends showed off their new tatoos symbolizing their bond of friendship. I was overwhelmed with emotion at seeing these memorials forever imprinted on their shoulder and arms. Jeffrey has some amazing friends and I'm blessed that they continue to remain in our lives.
This past Wednesday was the 10th anniversary of my mother's death. It did not start out as an emotional day, but by the end of the day I was emotionally exhausted. Stu's company invited Alex and I to a company meeting where they presented Stewart with a check for $2,000 for Jeff's Ballpark Tour. It was a very emotional presentation with one of those BIG checks. And it was so heartwarming to see the generosity of Stu's co-workers. Thank you does not even begin to convey my gratitude.
Afterwards, Alex, Stu and I went to lunch and then Alex & I went to the cemetary to visit my mom's grave. Jeffrey's grave is near my mom's, so of course, we stopped there too.
I want to thank everyone for the continued support and condolensces that I continue to receive and also for the contributions to Jeff's Ballpark Tour.
Wednesday, November 29, 2006 7:12 AM CST I believe Jeff asked God to send this past week of sunshine to me so that I could make it through the holiday. I hope you all had a wonderfully sunny Thanksgiving too.
Friends and family have been keeping me pretty busy with activities to keep my mind in the moment (just like Jeff). However, there is not a minute where he does not occupy my mind. Someone left a message in his guestbook that said WWJD - What Would Jeffrey Do? And I've kind of made that my mantra. I know that that thinking has helped me in dealing with my grief.
I've received a couple of phone calls this week that have really touched my heart. The Chamber of Commerce has selected Jeffrey as the Citizen of the Year and will present us with an award next week at a luncheon and Showchoir performance. It will be the first posthumous award presented by the Chamber in it's 35 year history of presenting the award. There's no way to express the emotion I felt after receiving that call.
There is also a fundraiser for the American Cancer Society next week. One of the organizers asked if someone from our family would like to make a presentation about Jeff and his foundation. Steven has been coordinating this, but it warmed my heart that they would want to include Jeff in their event.
I also received a call from a company that said instead of doing a "Secret Santa" gift exchange this year, the employees would like to take the money spent on a gift and donate it to Jeffrey's foundation. I couldn't help but cry.
The last call I received was from a school. Every year the school donates to a specific charity. They choose one from a narrowing of five. The kids are expected to research the charities and present their reasonings as to why one of the five should be chosen. Jeff's charity is one of the five. Although, we won't know until the end of the week if his charity has been chosen, it was wonderful to know that it was in the top five and that the kids will find out more about his mission.
I have been so overwhelmed by all the wonderful and giving people out there willing to help. It truly amazes me.
As some of you know, Jeffrey's birthday is next Wednesday - December 6th. A friend of mine asked if there was anything she could do for me on that day and I originally said "No, Thank you". But than I thought about it and asked her if she would make a donation to Jeff's foundation as a birthday present to him. I thought I'd extend that invitation to everyone. If you want to help celebrate Jeff's birthday, as a gift to him, please make a donation to the foundation.
Donation information can be found on his website at www.jeffsballparktour.com.
Again, I want to thank everyone for the cards, letters I'm still receiving and sentiments left on this site. Your prayers have certainly helped lighten the darkness.
Connie
Monday, November 13, 2006 4:00 PM CST On a sunny day I see his smile and it lights up the brightest of rooms. On a sunny day I hear his voice and laughter and it is infectious and makes me laugh. On a sunny day I smell his sweat from sitting in the sun. On a sunny day I see him playing football, cornhole or softball with his friends. On a sunny day I hear him singing Les Mis or Rent songs and it gets stuck in my head for the rest of the day. On a sunny day I see him hanging out with the little ones and the look of admiration they give him.
God, I wish it was a sunny day.
I miss you my darling Jeffrey and hope tomorrow will be sunny.
Wednesday, November 1, 2006 8:13 AM CST The events of the past few days have been overwhelming to say the least. I could never have imagined Jeff's impact on so many people. Thousands of people came to pay their respects to him during his wake and funeral. Many more have relayed their sentiments on this page and through e-mail.
As a mother, it is natural to have pride in your children. My sense of pride was increased to a whole new level. Not only in Jeff, but also in his brothers. They provided a wonderful send-off to Jeff by initiating a standing ovation for him at the church and also by singing "Take Me Out To The Ballgame" at the cemetary.
Children are such blessed gifts. I encourage every parent to appreciate each moment with your child(ren). Never let them forget how truly special they are to you. I believe because Jeff's mortality was in question for almost 4 years, I had more of an opportunity. I am grateful for that opportunity. I'm also grateful for the opportunity to be Jeff's mom.
Thank you for all of your supportive words in his guestbook. They have eased the pain tremendously.
Connie
Thursday, October 26, 2006 8:27 PM CDT I never realized how much you rely on your friend for even the smallest of decisions. I never would have planned something for Jeffrey without getting his input. And while I believe I knew what Jeff wanted, I always ran things past him to make sure. So, even though we had discussed his final wishes, there are a few things we never thought of and it's just a habit to want to turn to him for verification.
The notice will be in tomorrows Plain Dealer and Akron Beacon Journal, but the arrangements are as follows:
The wake will be Saturday - 10/28, 7-9 and Sunday - 10/29, 2-4 & 7-9 at Ferfolia Funeral Home - 356 West Aurora Rd (Rt. 82) in Sagamore Hills.
The funeral will be Monday - 10/30 at 10am at SS. Cosmas & Damien, Ravenna Road in Twinsburg.
Jeff will be laid to rest at All Saints Cemetary in Northfield near his grandmother. I know she welcomed him into heaven and helped him feel right at home.
I want to thank everyone again for the outpouring of support, the well-wishes, flowers and food. You're generousity is amazing.
Connie
Wednesday, October 25, 2006 10:28 PM CDT Tonight at 8:02pm, Jeff took his last breath on earth. It was our belief he did not want to miss Game 4 of the World Series. Unfortunately, it was rained out.
The Guy/Newbauer Family would like to thank the hundreds of people who have passed through our home to say good-bye to Jeff over the past couple of days. We have been overwhelmed by your kindness and support.
Funeral arrangements will be posted as soon as they are finalized.
Thank you again.
Connie
Saturday, October 21, 2006 8:39 PM CDT Jeff has had a pretty busy week. His family and friends have been visiting and keeping him occupied. The high-school football coach asked Jeff to give the pre-game speech before Friday nights last home game. Jeff was very honored and accepted. Needless to say, he was a little preoccupied thinking of what he was going to say on Friday.
The hospice nurse came out on Wednesday to draw labs and increase his morphine pump. He was having a lot of pain in his shoulder that we couldn't control.
Wednesday night his onc. called to say his platelets were down to 18. He had an appointment scheduled for Friday anyway, so we waited until Friday to go in for platelet transfusions.
Thursday, Jeff wanted to go to his last 7th grade football and of course, he wasn't going to let anything stop him. So he went. Unfortunately, they lost.
By the time we went in on Friday, his platelets fell to 12. He received 2 units. It took much of the day and I was afraid Jeff was going to be out of it from the benedryl they gave him, but he made it to the game to give the pre-game speech. Actually, they made a whole night of it for Jeff. He was presented with a team jersey with his high school number "55" by the head coach. The Superintendent of Twinsburg schools presented him with a plack and the Athletic Boosters presented him with a gift certificate. Jeff was also honorary coach for the night and tossed the coin to begin the game. The biggest surprise of the night was that all of his friends came home from school and wore "Newbe" shirts with the number "55" on the back. I was so proud of him! My emotions were a little hard to control witnessing the whole evening.
Jeff hung out until halftime and then had to leave. He was pretty worn out.
Today, was a pretty rough day. Jeff seemed to take a turn for the worse. His breathing has become more and more labored. He's on oxygen 24/7. I had the hospice nurse out most of the day trying to get him comfortable. They delivered a higher concentration oxygen tank. So instead of 5ml, he receives 10ml. If he still doesn't get any relief, I can give him morphine and ativan that he can take orally or inhale. I'm not to keen on increasing his morphine or ativan as this makes him so sleepy. I'll have to, at some point, figure out when he'll need to be more sleepy so he's not suffering any more.
Two of his friends stopped over during the nurse visit and were pretty upset. They called his other friends and they have been stopping by all night. I love his friends. Even though Jeff is quite oblivious to them, I know he feels them with him. He does wake up everyso often and says something funny, then he falls right back out of it again.
I'm so praying that today was just him having a bad day. He has tickets to the World Series on Tuesday in St. Louis. I'm hoping he'll bounce back so that he can go. As it looks now, I don't think he'll make it.
Thank you for being so supportive of Jeff. I appreciate your prayers. Please continue to pray for Jeff that he does not suffer.
Connie
Saturday, October 14, 2006 6:02 PM CDT I've typed this entry three times and every time I hit submit, my computer went down. Hopefully, this one will take.
Jeff finished his baseball tour and returned on Tuesday, Oct. 3rd. He was in some pain and indicated that he slipped getting into the shower on Monday and it felt like he strained a groin muscle. The pain continued and got worse on Wednesday. Wednesday night I called the on-call onc. and explained I could not control his pain. He had me increase his oxycontin and his oxycodone. This did not really help. However, it did sedate him so he just slept through the pain. On Thursday, he went to his 7th grade football game. While there, one of the kids bumped into him from behind. He experienced pain in his back in addition to his groin and legs. Needless to say Thursday night was worse than Wednesday. I decided to wait until Friday since he had chemo scheduled.
We went in on Friday and they drew blood to prep for chemo and discussed his pain. They decided to get an MRI of his spine and legs. The best way to do that quickly was to admit Jeff to the hospital overnite. He did not receive chemo.
They couldn't perform the MRI on Friday because the MRI machine was malfunctioning. So he had the MRI on Saturday. He was only able to complete the spine MRI because he was jerking too much. They decided to complete the legs on Sunday. He remained in a lot of pain even though they had increased his pain meds again.
In the meantime, we received the lab results from the blood draw from Friday. His platelets were low - 53, which didn't make any sense since he hadn't had chemo in over 3 weeks. Usually, platelets will drop 7-10 days after chemo. The oncologist indicated he thought perhaps Jeff's counts were on an upswing. I requested they draw blood again on Saturday to compare to Friday.
On Sunday morning we received the results from the MRI of the spine. Jeff has significant progression of disease throughout his spine, in his lymph nodes and in his muscles. We also received the lab work and his platelets dropped to 43. Based on the MRI of the spine and his decreasing platelet counts, the oncologist feels that his bone marrow is being replaced by disease reducing his platelet production.
Jeff completed the MRI of his legs on Sunday. The pain management team thought Jeff would benefit from implanting an intrathecal(sp?) pain pack. The idea was to implant a tube into Jeff's back and up along his spinal cord. the tube would be connected to an external pack that would provide a continous flow of morphine. The pain pack would be calibrated to provide the right amount of morphine to cover Jeff's pain. The meds would be delivered directly to his nerves instead of his blood stream which would be less sedating. After it's detemined that he was receiving the right amount of pain meds through, they would then implant the pack under his skin. Jeff agreed to the procedure and it was scheduled for Monday.
Monday morning we received the results from the leg MRI. They pretty much coincided with the spine results...disease progression. His pelvis bones are almost entirely replaced by disease. The shower slip just set off a time bomb that was waiting to explode anyway.
We also received lab results and his platelets dropped to 35. They gave him a transfusion prior to the pain pack procedure. They took him down and the pain surgeon would not perform the procedure because his platelets were too low. So they rescheduled for Tuesday. He had platelets before he went down again and his platelets were still too low to perform the procedure. They cancelled the procedure because they believe his platelets will never return to normal. They do not want to risk any bleeding or clots with an implant.
Wednesday they started Jeff on a pain pump that he could control. It provided continuous flow of morphine and he could push a button to request additional meds if necessary. Jeff was pushing the pump all time and still did not seem to receive any relief. They upped the dose that he received continously and also the amount he could request. Eventually, they got the right amount to provide relief.
His oncologist then became concerned with Jeff's breathing. He rattles when he breathes while he's sleeping and his pulse-ox was low. She wanted to be safe and have a CT scan.
The CT scans were read the same day and his lungs showed innumerable nodes. This was strange because Jeff had a bronchoscopy on Sept. 6th and it showed no evidence of disease in his lungs. His lungs were filled with lesions and they appeared cloudy compared to his CT scan on Sept. 1st. It's amazing how fast the diseased progressed in such a short period of time. His onc. said that once the disease spreads to the lungs, it usually progresses rapidly. The news was pretty devastating.
To briefly summarize: Jeff is using an external pain pump connected to his med-port. He will always have to be connected to the pump. He has an oxygen machine which he will need to use while he's sleeping and eventually he will need it all the time. He walks with a cane due to the pain. He will probably have to have weekly platelet transfusions. He had 2 more bags before he left the hospital on Thursday (so much for the overnite stay). There is nothing else they can do for Jeff as far as any treatment. Hospice will take over all of his care going forward.
Jeff returned to the clinic on Friday for bloodwork his platelets were 34. They decided to transfuse him again with 2 more units. He was planning on going to a playoff game in Detroit. He didn't end up going today and thought he could go tomorrow, however, Detroit just won. So there will not be a game tomorrow. Anyway, the oncs. wanted to play it safe.
Today, 15 or so of Jeff's friends came over to hang out. They stayed to watch the Ohio State game. Jeff had a great time and it was so nice to see him up all day. I really appreciate Jeff's friends. They are so supportive of him. They say a man's wealth can be measured by the number of friends he has.....Jeff is the richest man in the world!
Please continue your prayers for Jeff. He needs them more than ever.
Thank you.
Connie
Friday, September 29, 2006 8:22 AM CDT Well Jeff is approaching the last 3 games of his baseball tour. As much as he's enjoyed the experience, I know he's looking forward to relaxing. He definitely needs the rest.
He's been so tired on this last leg of the tour. He sleeps on the plane trips, he falls asleep at the games and during dinner.
He's met so many friendly and supportive people on his tour. People have been so generous along the way, it's really been overwhelming. Thank you all for your thoughts and well-wishes.
Jeff has finished one cycle of the vinorelbine. He's starts the second cycle next week. He's experienced minimal side effects with this drug. Although, he has experienced some neuropathy (numbing, tingling, achy feeling) in his right hand. His oncologist is trying to adjust the nerve medication to counteract the symptoms, but it will take a little while to become accustomed to the increased dose.
Jeff was able to take in a Brown's game in between baseball games. A very thoughful family, struggling with their own child's illness, provided Jeff the opportunity to get a tour of the stadium and get on the field prior to the game. He was on the sidelines all the way up to the kick-off.
It was a wonderful experience and Jeff was in awe of his Brownies. Thank you again Svenson family for your generousity!
While in NY this week we were able to meet up with the Billingtons. Mike also has stage 4 alveolar rhabdomyosarcoma. We originally met on this caringbridge site and met Mike and his family for breakfast while we were vacationing in Myrtle Beach back in June. Mike also went golfing with Jeff during that trip.
Mike is being treated at Sloan-Kettering and was in NY for scans on Tuesday so we met Mike and his mom Pat for an early dinner before the Yankees game. We talked for about 2 hours during dinner and if we didn't have to get going to the game, we probably would still be there talking. Thanks Pat and Mike for taking time with us during our stay.
On Wednesday morning, Jeff was interviewed on ESPNs Cold Pizza. The segment is suppose to air on Tuesday, Oct 3rd on ESPN2. Jeff was awesome. The people in the studio were pretty amazed at how well spoken and at ease he is in front of the camera. They said they've interviewed high profile athletes who do not interview as well as Jeff.
My step-son Steven was in heaven. He is probably the biggest sports fan you could ever meet. And to be at the Cold Pizza studio was pretty astonishing for him. He was probably as or more excited than Jeff. We were in the green room with Mike Simko who was race car driver that jumped through the windshield of his opponent's car. That was exciting to be able to ask him questions about what actually happened during that race. We also met Woody Paige & Jay Crawford. Jeff was interviewed by Dana Jacobson. I know if you're not a sports fan, you probably don't know that they are the anchors for Cold Pizza. Steven's fiance, Lauren was a little bewildered by the whole experience. It was so priceless to see the excitement in Jeff's, Steven's and Lauren's faces. It's one of those mental pictures that when you think back at the moment, it will always bring a smile.
Anyway, Jeff was in Colorado yesterday, he'll be in Phoenix today, Seattle tomorrow and San Fran on Sunday. He's going to relax an extra day at the Ritz Carlton in San Fran. It is a five-star resort and the stay was donated by Jessica Ortiz and the Ritz. I hope it allows him a little bit of time to relax before he starts treatment on Tuesday.
Please continue your prayers for Jeff. Thank you again for your kindness.
Connie
Monday, September 11, 2006 6:58 PM CDT On Wednesday, Jeff had a biopsy of some nodules that were in his lungs. He's been battling pneumonia for several weeks and when he had his latest CT scan it was still showing up. They decided to go and grab some samples to test. It's not Rhabdo, which is great news. Although, the biopsy did not show any type of bacterial or fungal infection either. The oncologist surmised that it was just some leftover fluid that possibly had hardened and had not yet been flushed out naturally from his lungs. Jeff will tell you the procedure - bronchoscopy was the worst experience of his life. He loves to embellish his stories of his experiences so that they end up being pretty comical. So if you get a chance and have not already heard the story, ask him to tell you.
Jeff spent the weekend globe-trotting again this weekend. Friday he was in Minnesota, Saturday he was in Chicago and Sunday he was in Cincinnati.
Saturday morning he took time out to be interviewed by CNN. He was well composed and confident and I was so proud. I didn't need the anchor woman to tell me how wonderful and amazing Jeff is, but I'm glad she was able to share that info with the nation.
Since Jeff's biopsy was ok, he was able to begin chemo today. He will be on vinorelbine. We call it "vanilla bean". He's been on this drug before in conjunction with other chemo agents. This time it will be a single agent administered one day a week for two weeks. Then he'll have one week off and then start the 3 week cycle again. He'll maintain this regimen at least until the end of baseball season. After that, he'll re-evaluate his options.
After treatment today, he went to football practice. I of course, went home and took a nap. I think it was for the both of us.
Thank you for keeping Jeff in your thoughts and prayers and thanks for all of your support.
Take care.
Connie
Monday, September 4, 2006 11:46 AM CDT In my last entry I told you the latest news regarding Jeff's scans. The trial drug - ixebiplone has not worked for him. His cancer has progressed and his onc. does not feel he has much time left.
Jeff is currently on his way home from a weekend in Texas fulfilling his dream of visiting all the MLB ballparks. He called me from the plane before he took off for his flight home and was so positive.
He told me he's going to face this latest news as he's handled all the disappointing news. He's going to fight through and live his life to the fullest.
He feels like he has so much more to do and live for and his confidence proved to me that he will do what he can to fight. As he said this to me he said his brother Alex, who was sitting next to him on the plane, gave him a "high five". His brother told him he was going to fight right along with him. I told him we are all going to fight right along with him.
I feel, as we all do, that all of my sons are amazing. They make me very proud and continue to give me hope. They raise me up in a dark hour and make me smile. Jeff knows he will succumb to his disease, and yet he continues to prove that he is such a wonderful man.
Please continue to pray for Jeff and his sister and all of his brothers.
Thank you all for your support in thoughts and prayers.
Connie
Friday, September 1, 2006 3:58 PM CDT We just returned from the oncologists and the news was not good. Jeff's disease has progressed throughout his skeletal system. He has new lesions and the lesions he had before have grown. Jeff had told me last week that he somewhat expected this to happen.
He's been extremely tired this week. It's almost like he has narcolepsy. He falls asleep at the strangest moments. While talking, eating, sitting...it's just strange. Some of this may be from his baseball tour, but I think it's also because of his disease.
Jeff wants to continue to go to the baseball games and live life to the fullest. His oncologist does not want to deny him any of his adventures. So, he has chosen to forego anymore "big gun" treatments. There really weren't anymore left anyway. He will start a treatment that will allow him to continue his tour and allow him the longest quality of life.
While Jeff suspected that his disease was not getting better on the new chemo, he didn't think it was getting any worse. So this news is quite devastating to him. He was feeling pretty numb this afternoon. This disease doesn't care how he feels. It makes it hard to continue to feel with every letdown. He is still committed to fighting. He wants to live, but knows he doesn't have long.
Jeff is off to Texas tomorrow to see the Astros and the Rangers. He's looking forward to the trips because they take him away from the reality of all of this crap (no better word, sorry).
Please continue to keep Jeff in your prayers.
Thank you.
Sunday, August 27, 2006 0:37 AM CDT At his point in time, all I can say is WOW! Jeffrey is on a high. The last couple of weeks have been a whirlwind of commotion and it doesn't look like the wind is going to die down soon.
He finished his last round of treatment on Friday, Aug 18th. On Saturday, the 19th, they held the 1st ever walk for The Littlest Heroes (a local organization committed to servicing NE Ohio families with children afflicted with cancer). Jeffrey was the spokesperson and he did an awesome job. He was dead tired but was committed to doing what he could for the organization. There were a few times when he said he was ready to go because he was exhausted. I think he was afraid he was going to miss something, because he kept telling me, let's just stay for this or let's just stay for that. He was so cute!!! He ended up staying till nearly the end.
He had a pretty hectic week afterwards. On Monday, he flew to CA to the Padres and Tuesday they drove to LA to see the Anaheim Angels. Wednesday morning he was off to Detroit to see the Tigers. He was home on Friday to throw out the 1st pitch at the Indians Game.
If you weren't there, it was pretty amazing as all of Jeff's family and friends were there to support him. They wisked him from the mound (he threw a strike!!!!) to conduct multiple interviews for news reports. He, of course, answered all of the questions from the reporters like a natural. It was overwhelming to see the turnout for Jeff and I want to thank everyone (even if you were there in spirit).
For those of you in Cleveland, Jeff was on the front page of the Plain Dealer. It discussed Jeff and his Ball Park Tour. For those of you that are not from the area, you can read the online article at: http://www.cleveland.com/search/index.ssf?/base/summit/115649555172630.xml?ncounty_summit&coll=2&thispage=1]here[/link] for the article.
To donate to his website, please go to: [link=http://www.cleveland.com/search/index.ssf?/base/summit/115649489272630.xml?ncounty_summit&coll=2]here[/link] for the donation box in the paper.
As stated, as Jeff threw out the 1st pitch, there was a "mound" of media attention. To view the interviews please visit the following:
http://www.newsnet5.com/fridayarchive/9741336/detail.html
or
http://www.cnn.com/video/player/player.html?url=/video/sports/2006/08/26/boyd.oh.cancer.ballpark.wkyc.wkyc
While these interviews do not mention Jeff's specific cancer, the Littlest Heroes organization has mentioned that Jeff is suffering from Alveolar Rhabdomysarcoma.
Because this is a rare cancer, it's important to mention the cancer as often as possible as well. We would like others to understand the true nature of the disease. It is a cancer that typically effects children. The subtype of alveolar distuingishes this cancer as being more severe than the other 3 subtypes of the disease. The fact that Jeff is stage 4 makes it very difficult to treat. The fact that he's stage 4 and has relapsed 3 times is...well let's just say... even harder to treat. Jeff is committed to educating people about the wonderful organizations he supports and also committed to educating people about his disease.
Jeff left Saturday morning for Atlanta to see the Braves in the afternoon. He will be interviewed by CNN while there. You can see the broadcast between the 8 and 9am hour on Sunday. To see all of the highlights of Jeff's tour, please visit www.jeffsballparktour.com.
Jeff will be having scans on Wednesday and Friday of this week to see if he's on the right track with treatment. We'll have the results Friday afternoon.
Please pray that the results show significant improvement or no evidence of disease.
Thank you again for all of your support.
Connie
Wednesday, August 16, 2006 7:32 AM CDT Sometimes I don't realize how long it's been between posts. I usually just go to the guestbook and don't read the journal entry. So I apologize for the timing since the last post.
Jeff has been doing great. He's been enjoying his baseball tour. Since the last entry, Jeff has gone to Pittsburgh and Philadelphia. He had already been to PNC park for the All-Star game. He really enjoyed Philadelphia's park. They had terrific seats. You can read all about his tour at www.jeffsballparktour.com.
He started his third round of treatment this week and other than being extremely tired he's been doing fine. His oncologist believes that his counts should start to be effected after this round. The accumulative effect of the drug will start to catch with him. We're hoping that's not case, since he has a busy schedule the next month or so.
Jeff started coaching the seventh graders at Twinsburg Middle school again this year. He says it's a little frustrating this year. He attributes that to his chemo treatment. He's also helping coach his uncle's little league football team. He enjoys coaching the younger group. He won't say it, but I think it's because they haven't developed the "attitude" yet.
So in between his baseball trips, coaching, chemo and friends, he's been extremely busy. Again, I don't know how he does it because just talking about it makes me exhausted.
He's gearing up for The Littlest Heroes walk this Saturday, where he'll be the spokesperson, kicking off the event. The walk will be held at Jacob's Field (the home of the Cleveland Indians). He's also looking forward to throwing out the first pitch at the Indians game on August 25th. If you're in the Cleveland area on that day and wish to attend the game, I have tickets for sale. They're $13 per ticket. Just let me know.
Take care and as always, Thank you for checking in on Jeff.
Connie
Saturday, July 29, 2006 3:05 PM CDT The past week and a half have been a whirlwind for Jeff. On Thursday, the 20th, Jeff had an MRI. We waited until Tuesday to get the results. He had a CT scan scheduled for that day and we decided to wait for all the results. Besides, his oncologist would have called if things had changed significantly.
On Friday, the 21st, he left for LAla land. It was a hectic few days. He went to the Dodgers games on Friday and Saturday night. On Friday, he was able to be on the field for batting practice and he met and talked with Billy Bob Thornton. He also got to talk to Sandy Alomar, Jr. (his all-time favorite baseball player).
The rest of his time in LA was spent at Huntington Beach, site-seeing down Rodeo Drive and a visit to a surfing competition. He was also excited to attend Monday night's taping of Jay Leno before he boarded the red-eye back home.
He went directly to the hospital for chemo from the airport on Tuesday. What a trooper! But don't ask him anything of what occurred during treatment, because he was out like a light. His scans results were stable. No better, nor worse. So that's a good thing, I guess!
Treatment was event free this week except for an episode that occurred yesterday. He found it difficult to breathe for a couple of minutes and he said his heart felt like it was pounding out of his chest. Within 10 minutes, he was feeling better.
Last night, his father surprised him with a hot-air balloon ride. He said it was awesome!! He was up in the balloon for over an hour and reached heights of 3,000 feet. They did have a slight problem with the landing that left Jeff a little sore afterwards. But he admitted it was worth the pain.
Jeff finished this second round of treatment today and went out with some friends almost immediately after he got home. Never a dull moment for him. Tomorrow he's off to Pittsburgh for a Pirates game and Friday he'll go to Wrigley Field for the Cubs. For more on Jeff's Cancer Sucks Baseball Tour, please visit www.jeffsballparktour.com.
Please keep Jeff in your prayers and thank you for stopping by to check on him.
Connie
Wednesday, July 19, 2006 9:14 AM CDT Jeff has had a pretty eventful week and has become somewhat of a celebrity. Friday morning Jeff was on KDKA radio, again, for a follow-up on his interview from Tuesday. You can listen to both of his interviews on www.kdkaradio.com.
After his radio interview on Friday, Jeff was interviewed by a local TV (WEWS) for his involvement in an organization called The Littlest Heroes. This organization works to improve the lives of northeast Ohio children living with cancer. The Littlest Heroes have asked Jeff to be the spokesperson for their organization. They are organizing the 1st annual "Race For Children's Sake" to be held on Aug. 19, beginning at 9:00am at Jacobs Field. So if you're in the area, please feel free to stop by.
The organization has also coordinated a group outing at Jacobs Field for the Indian's VS. Tiger's game on Aug. 25th. Jeff has been asked to throw out the First Pitch at this game. He's thrilled!!!!
Jeff is off to CA this weekend to continue his Cancer Sucks Baseball Tour 2006. He'll be taking in a Dodgers game. Before he leaves on Friday, he will have scans. When he returns from his weekend, he'll begin his second round of the new chemo.
Please leave Jeff an encouraging note to help him get through next week.
Thank you for all your prayers.
Connie
Wednesday, July 12, 2006 5:54 PM CDT Sorry it's been so long. Things have been pretty hectic here on the home front so forgive me if this is another long entry.
Jeffrey has embarked on a Baseball Tour. The last entry discussed the opportunity he had with the Indians and since then, arrangements have been made for Jeff to visit other Major Leauge parks. Jeff was surprised with a trip to Boston's Fenway Park on the 28th. His father told him he had a surprise trip and didn't tell Jeff where they were going. They drove to Pittsburgh airport and a private plane awaited them. Jeff's brother Alex and his father's family were inside the plane to add to the surprise.
Jeff, Alex , their brother Cole and their father flew to Boston. They were chauffered by limo to their destination - Fenway Park. Jeff had the time of his life. They had a tour of the stadium and visited many of the sites in Boston.
The following week Jeff began his first round of ixabepilone. An experimental drug that has shown some promise in the fight against relapsed soft-tissue cancers. We can only hope this will be the magic ticket for Jeff. There are not alot of options left.
The week was pretty long as the treatments were pretty much 9 to 5 - Monday through Friday. Jeff tolerated the treatment pretty well. No nausea or stomach distress. He did, however, suffer from bone pain. On Friday they gave him zombita(sp?) to counteract the pain. This drug apparently makes the pain worse before it gets better.
Jeff woke on Sunday in extreme pain and was running a temperature. We took him to the hospital and he was instantly admitted to provide pain meds and antibiotics. Jeff received an awful lot of pain medication including oxycontin, oxycodone, torodal and morphine and this did not even touch the pain. When his fever would spike, the pain became excruciating. The fever was caused by a sinus infection that had set in from his recovery of walking pneumonia the week before. They also administered albuterol treatments every 2 hours to help with his breathing, which became quite labored.
Jeff's main concern during this whole ordeal was to be released in time for the All Star game on Tuesday night. He had tickets and there was no way he was missing the opportunity to attend an All Star game. His doctor was willing to release him on the condition he maintained the pain meds, breathing treatments and antibiotics.
Before he was released from the hospital Tuesday morning, Jeff was interviewed my a Pittsburgh radio station (KDKA). The mayor of Pittsburgh had recently been diagnosed with a rare cancer and the show was dedicated to the cancer survivors and tying that in with the All Star game. The radio host did a lead-in describing Jeff's illness and his desire to attend baseball games in all the Major Leauge parks. It was pretty amazing.
Jeff did attend the All Star game and had an amazing time. Friends of his father provided the tickets and transportation around Pittsburgh, as well as a Pujols All Star Jersey and tickets to Fan Fest. Jeff was totally amazed at the treatment he received and the souveniers he was provided.
Jeff has scans next Thursday. Then next Friday, he's off to CA to see the Dodgers play. He'll begin his next round of treatment on 7/25. Please keep Jeff in your prayers.
Thank you.
Sunday, June 25, 2006 10:34 PM CDT After a 2 week vacation, it's nice to be home! I made a last minute decision to stay in Myrtle Beach the second week with Jeff. He wasn't feeling all that well the week before we left and instead of having him miss his vacation with his friends, I stayed "just in case" something should have happened. Thankfully, nothing did happen.
He had a great time. The first week, we rented a condo with my entire family. There were 22 of us. It was very hectic, but it will be the most memorable vacation that any of us have ever had.
The guys had golf dates scheduled on Monday, Wednesday and Friday. The Wednesday date was cancelled due to the effects of tropical depression Alberto. That was a pretty amazing storm. It worked out great though, because it gave Jeff and I an opportunity to have breakfast with another Rhabdo family. Mike was diagnosed with rhabdo last year at the age of 20. He is quite an amazing young man and he and Jeff hit it off. We sat and gabbed for a couple of hours, sharing rhabdo stories. Jeff invited Mike to go out golfing with the guys on Friday. Apparently, everyone had a great time (except my nephew Tino, who lost lunch on the 10th hole).
Other highlights of that week were putt-putt, meeting my cousin Michele and her family at the Calabash seafood buffet, Barefoot Landing and Joe's Crab Shack (please Do NOT ask my father about that place!!!), NASCAR racing, Broadway at the Beach and lunch at Margaritaville. But the biggest highlight of the week, was Thursday night. Jeff, Alex, Steven, Lauren and Tino came back from Broadway at the Beach earlier than the rest of us. They planned on making dinner for the whole family that night. We could never have expected what we received.
When we walked up to the main living area, they had arranged the tables in such a way to resemble a restuarant. With tableclothes, placecards and beautiful centerpieces made from sand from the beach and candles. The meal began with appetizers of jalepeno poppers and mozzerella sticks and cocktails. That was followed by a delicious salad. Then we were offered a fettucine alfredo with or without steamed mussels. Alex prepared his own alfredo sauce which was totally awesome and he cooked the mussels in the sauce for moment before serving (to die for). For the main entree, we were provided a choice of lamb, steak or salmon. All of which were cooked as requested and placed atop of mashed potatoes with capers and almonds and green beans. It was absolutely amazing. For dessert, we had strawberry shortcake. It was the most amazing meal. To top it off (as if you could) they prepared a bill and handed it to my dad. When my dad opened the bill, inside was a Thank You card indicating the bill was paid in full and thanking him and the adults for the trip. I wanted to cry. That night will be the thing I remember most about this vacation. Thanks again, Jeff, Alex, Steven, Lauren & Tino.
Saturday morning, the rest of the family left, so Jeff, my neice Julia (I asked her to spend the week with me) and I headed over to the hotel where we were going to be staying the next week. I was fortunate enough to find a room in the same hotel where Jeff was staying. My thought was to stay out of Jeff's way so that he could enjoy the week with his friends. As it turned out, we hung out more than I would have thought.
Jeff went golfing Monday, Tuesday and Thursday. He was excited on Thursday, because he had earned enough credits for him and his friends to golf for free on Arnold Palmer's signature golf course. The only bad thing, was that Thursday it was like 98 degrees. When he got back, he was totally soaked.
His friend brought Jeff's cornhole boards down to the beach. Of course, they met alot of people playing cornhole on the beach. They also had fun playing putt-putt several times, going to NASCAR and Broadway on the Beach.
We got home late Friday night and that has been the only time Jeff has been home since. His father planned an outing at Jacob's field with him. The Indian's played the Red's. Jeff was able to attend batting practice on the field and received a tour of the stadium. He was fortunate to meet many of the Indian's players. Eduardo Perez asked Jeff about his illness and spoke to him for about 10 minutes during practice. Then he gave Jeff one of his bats (which Jeff has yet to put down). Jeff also received several autographs on baseballs from Indian's players including Grady Sizemore, Eduardo Perez, Aaron Boone, CC Sabathia, Bob Wickman, Jake Westbrook, Ben Broussard and Ronnie Belliard. They also signed the Indians jersey he was wearing. Jeff was surprised when he was called over to the visitors dugout. He was asked to go behind the dugout and up some stairs and wait outside by the visitors clubhouse. At that moment, Ken Griffey, Jr. came out and was introduced to Jeff. Griffey talked to Jeff for a little and then asked him why he was wearing all the Indians stuff. Of course, Jeff said because he's a hometown boy and fan. Griffey told him he was going to have to change that went into his locker and grabbed his jersey from the previous night and autographed it and gave it to Jeff. He also signed a couple of baseballs for him. Jeff called to tell me he was having the best day of his entire life. After the game, Jeff went to Michigan with his father to attend a family reunion. He got home late and went to his friend's house (with his bat) to share his game day stories.
Jeff was supposed to start treatment tomorrow, however, because he hasn't been feeling all that well, they are going to scan him tomorrow. We have an appointment with the doctor on Tuesday to get the results. We will know more after that appointment on what will happen next.
In the meantime, Jeff will move into his new apartment this week. His brother started moving last week. Hopefully, by next weekend they will be entirely moved.
Please keep Jeff in your prayers. Thank you.
Tuesday, June 6, 2006 9:57 AM CDT I think Jeff is still recovering from his weekend. We had the Relay For Life this weekend - Friday night & Saturday. It went very well. Jeff, again, was the top individual fundraiser. We do not have his final tally, but his entire team raised almost $13,000. Way to go, Team Newbe!! Thank you to all who contributed to his team's success!
The highlight of the event was when Jeff & Alex MC'd. The two of them should be a comedy team. I think everyone enjoyed their antics between the 3am and 8am hours. Of course, this helped them earn the Most Spirited Award for the second year in a row. After the event, they both came home and went to bed (about 2pm) and didn't wake up until the next morning.
Jeff took in 18-holes of golf on Sunday and then went to the movies and had a cookout with friends. He really does live each day to the fullest.
He is now gearing up for his 2-week vacation in Myrtle Beach. He already has about 6 golf dates set up. Please pray for nice weather!!
Thanks for stopping by and checking in on Jeff. He really appreciates all of your sentiments.
Connie
Thursday, June 1, 2006 11:04 PM CDT Jeff has had a pretty good week. His counts are up and he's looking forward to moving into an apartment with his brother and going to Myrtle Beach for 2 weeks in the middle of June. He also has Relay For Life this weekend.
He started his oral chemo treatment on Tuesday. He'll take this drug for 3 weeks until he comes back from vacation. Then he'll be hospitalized for his 3 day treatment.
The oral chemo started to cause some problems tonite. He started suffering from severe nausea. He's taken this drug in previous relapses and it's really never caused him any problems. I think it's the accumulation of all the chemo that's causing the drug to effect him this time. Anyway, he's hoping the chemo and anti-nausea meds don't interfere with his ability to participate in Relay tomorrow.
Please pray that he's able to enjoy the event and that the oral chemo does not make him miserable for the entire 3 weeks.
Thank you for stopping by to check on Jeff.
Connie
Friday, May 26, 2006 7:03 AM CDT Things have been pretty strange for Jeff. It just seems this treatment has not offered him any breaks.
He went in for platelets on Tuesday and experienced a terrible allergic reaction. He's had reactions in the past and it is hit or miss with him, but this time the reaction was quite severe. It took a triple dose of IV benedryl and a double dose of an IV steriod to control the hives, rash and itching. He did manage to get a back rub and foot wash out of the ordeal. Holly, the Nurse Practioner was so sweet to comfort him.
Again, he amazes me because he was out golfing with his buddies the next day. He continues to live life to the fullest and I truly admire him for that.
We did get some devasting news today. Jeff's little friend Gracie succumbed to her disease - Nueroblastoma. Gracie was such a bright spot on S20 at the Children's Hospital. She would always share her Sesame Street band-aids with Jeff. She would always make it a point to stop by Jeff's treatment room to visit. For 4 years old, Gracie experienced so much in her short life and we will miss her dearly. Please pray for her family during this difficult time.
It seems that asking for prayers for Jeff not suffering any more setbacks is quite insignificant to such a loss.
Thank you.
Monday, May 22, 2006 7:40 PM CDT Another day...another journey.
Jeff was bummed last night because the Cav's lost. They put up a pretty good fight though. We are all pretty proud in Cleveland.
As previously mentioned, Jeff went in for platelets on Friday. His oncologist wanted him to go to the local Clinic satellite office for blood work this morning. So he did and then went golfing with his uncle. Tonite, his oncologist called indicating that his platelets are still dangerously low and that he will need to come into the Clinic tomorrow to be transfused.
Sometimes it's so difficult to remember that there is anything wrong with Jeff until we get these little reminders. Sometimes the reminders are a little to frequent. What scares me the most is that with each reminder, I know that Jeff questions whether or not to remain on the aggressive regimen. This is exactly what he did not want. He did not want to have to spend more time in or at the hospital. He told his oncologist on Friday, that he will give it one more round, but if it is as rough as this first round, he'll opt for a less aggressive plan of attack.
Please keep Jeff in your prayers that this dose of platelets will do the trick.
Thank you.
Connie
Saturday, May 20, 2006 4:21 PM CDT This has been a strange week. Jeff came home from the hospital on Tuesday. Wednesday he met with the people from Curesearch to discuss the Milestone walk at the Cleveland Zoo (August 6th)....more details to follow. Wednesday night he went over to his Dad's for a family portrait and watch the Cav's game (WON!!). Thursday, he went to the Indian's game and stopped on the way home to have his blood counts checked. Thursday night, I received a call from the oncologist saying Jeff's counts were dangerously low and that he would need to come in for a transfusion. So Friday after a meeting in the morning, he went to the Clinic for platelets. The normal range is between 150,000 and 400,000. Jeff's were 8,000. His white blood count was practically non-existent even though he took Neulasta (white blood cell booster)after his treatment. None of this stopped Jeff as Friday night he invited his friends over for a Cav's party (LOST $@%&). Today he went to the Zoo to map out the plans for the Milestone walk. Tonight, he's going out with his friends after he shaves his head....his hair starting falling out today and he had these two random bald spots in the back of his head.
He really, truly is an amazing guy!!! I do not have half the energy and motivation and I don't have cancer. He's like the energizer bunny. I love him!
Please pray that he maintains his energy level and that we do not have to take him to the hospital again until his next treatment. Please also pray that the Cav's win tomorrow night!!!!!
Go Cav's
Tuesday, May 16, 2006 10:14 PM CDT I'm sorry it's been awhile since I've lasted updated Jeff's page. We were home 4 days from his treatment and he had to go back in the hospital again.
The doctors are thinking he had an allergic reaction to the fentanyl patch he's on to control pain. His face, nose and jawls became red and inflammed. They ran blood cultures to see if perhaps he had a fungal infection but let him go home today because the swelling went down. The cultures take a while to grow and he can wait it out at home on antibiotics. He's also extremely neutropenic. So there's not much he can do without jeopardizing his wellbeing.
He's been in the hospital 10 out of the last 14 days. This is exactly what he feared when he chose the aggressive course of treatment. His thinking is that if he's already in the hospital after the first treatment, what's going to happen for subsequent treatments.
He's talking that he wants to discuss alternative treatment with his oncologist. He wants so badly to be able to do the things he wants to do. He obsviously can't do that while spending 2 weeks of every month in the hospital. He also wants to go home to his house in Kent. He hasn't been since before his treatment. It's hard to be 22 year-old independent soul and have to be dependent on others.
Even though he's struggling with all of this, he still has his sense of humor. He's sitting here playing with the dogs and acting goofy. I love him!!!
Please pray for both mental and physical strength for Jeff.
Thank you for all of your thoughts and prayers during this difficult time.
Connie
Friday, May 5, 2006 11:49 PM CDT Well, we thought we'd be slick and postpone the usual (nasty) April scan until May thinking we could trick the cancer. But alas, it's too smart.
Jeff's recent body pain is due to the numerous lesions riddling his bones from his hips down. They also found lesions in his chest and shoulder.
He went into the Clinic yesterday (Thursday) morning and they admitted him to provide IV pain meds and conduct marathon scans. They started with a CT of his torso yesterday afternoon which took about an hour. They originally said the MRI scan would be anytime after 9pm yesterday, however, they didn't take him down until 4am this morning for a 3-hour head and leg MRI . They brought him back up to his room, where he had something to eat (finally). Unbeknownst to him, they had scheduled a PET/CT scan. Of course, because he ate, that had to be rescheduled to noon. The PET took over 2 hours. He was done with that around 3pm so we took a detour through the cafeteria on our way back to his room. When he got back they told him that he needed to have an MRI of his spine. Again, we told them that he just ate, so they rescheduled the MRI for "sometime after 8pm". That scan began at 9pm and took a little over an hour.
While we won't have the results from the last MRI until tomorrow, the rest of the scans were conclusive for relapse disease. This obviously was not the news we wanted to hear, although Jeffrey pretty much suspected that was the case a week ago.
Some of you may realize that with each relapse, Jeff's treatment options become fewer and fewer. There's not alot that Jeff has not already experienced in the way of chemo agents. In accessing the treatments, Jeff's oncologist always asks him to weigh quality vs. quantity issues. Meaning they can throw in all the big guns to extend his life for as long as possible while sacrificing the quality of that life due to the harsh effects of the treatment; they can throw some medium guns that will buy some time while maintaining an acceptable quality of life, or use absolutely no guns and enjoy the life he has left.
Of course, Jeff (bless his heart) is a fighter and wants to start off with the big guns. He wants to leave the option on the table that if the treatment starts to impede too much on his quality of life that he can change plans at any time.
That being said, Jeff will begin a pretty harsh chemo regimen of Ifosfamide, Carboplatin and Etoposide (ICE therpy) tomorrow (Saturday). The treatment is administered intravenously, inpatient over 3 days every 3 to 4 weeks, depending on how well his bone marrow recovers. The treatment will also include a dose of Avastin. They will scan again after 2 cycles to see if his tumor is responding to the treatment.
This regimen is known to wipe out the bone marrow, making neutropenia very likely. Neutropenia is the lack of white blood cells in your system needed to fight infection. This would make Jeff more susceptible to infection and more likely to need blood transfusions and platelets.
What truly amazes me is that I can look at my 6', 275# seemingly healthy, happy, beautiful son and know that there is this terrible monster inside trying it's best to take him away. If ever a parent could be granted a miracle.....please help me pray for one now.
Thank you.
Connie
Wednesday, May 3, 2006 9:45 PM CDT Things have been going good for Jeff. He truly seems to be enjoying life. Hanging out with friends, going to school, living on his own.
Last week Jeff called to tell me he's been having pain in his legs. Today, Jeff called to tell me his pain is excrutiating. He called his oncologist and she wants Jeff to come in tomorrow. Hopefully, they will scan him tomorrow (and not make him wait until next Wednesday) to make sure his pain is not due to recurrance. My heart is in my throat and I know it will be a sleepness night waiting and wondering.
Please keep Jeff in your prayers tonite, that his pain is not related to his disease.
Thank you.
Connie
Please also pray for Jeff's great-aunts Inez and Ida and his grandfather (they have been ill and hospitalized) and also his grandfather's fiance - Connie, as she fights her own battle with cancer.
Monday, April 17, 2006 4:02 PM CDT I hope everyone had a blessed Easter.
My how time flies. It's funny, when Jeff is doing well, the time seems to go by so fast. Yet, when he's going through treatment, the time seems to drag.
Jeff is doing great! He's looking forward to summer. He's unsure if he's going back to school in the fall. He wants to take a semester off. It's hard for him because he sees all of his friends and his brother graduating from college. He has missed so much because of treatment that he's only considered a sophomore.
His real goal is to make it to a year cancer-free, then attend firefighter school. He's always wanted to be a fireman since he was young.
Jeff has been playing intramural softball. He seems to have forgotten that he's supposed to use his glove to catch the ball. He's been catching them with his legs and has awful bruises to show for it. They are very colorful though.
Jeff continues to stay busy with school and sports and also his fundraising efforts for Relay For Life and Curesearch.
Please stop by his guestpage and leave him a message.
Tuesday, March 28, 2006 2:04 PM CST Things have been going great for Jeff. His remission allows him to concentrate on school and having fun. He began spring break this week and is planning on getting in a couple of rounds of golf - weather permitting.
Jeff has also been busy coordinating the first CureSearch walk in the Cleveland area. It's planned for August at the Cleveland Metroparks Zoo. CureSearch is an organization that raises money for childhood cancer research. He is truly amazing.
He has been fundraising for Relay For Life Twinsburg. Last year, Jeff's team raised almost $19,000. He's hoping to pass the $20,000 mark this year. Again, truly amazing.
Jeff's next scans are scheduled for the beginning of May. We are praying he remains in remission indefinitely.
Thank you for stopping in to check on him.
Connie
Wednesday, March 1, 2006 6:00 PM CST Jeff had his scans today. We are so excited, they came back CLEAR!!! Knowing where he's been and where he is now, this news is almost like a miracle. Jeff went into the appointment thinking the worst. The news couldn't have been better. (Don't ask him to pick your lottery numbers.)
I celebrated my birthday yesterday and the only thing I asked for was clear scans. I got the BEST birthday present ever.
Jeff will return for scans again in 8 weeks. We are hoping and praying he'll have clear scans indefinitely.
Thanks for stopping by and leaving your thoughts and prayers.
Connie
Saturday, February 11, 2006 9:47 AM CST Things have been pretty quiet on the home front. We are 1/2 way through the wait for Jeff's scans. The wait can be quite grueling. I'm sure these next few weeks will drag, extending the agony and increasing the anxiety.
Jeff on the other hand seems unphased. He's going to classes without any treatment interruption. Which means he has no valid reason for missing any classes this semester (sorry Jeff). He's also hanging out with his friends, working out and studying. This weekend he went to Toledo to visit his old pals. He'll be home in time to make a day trip to Greektown with his Grandfather on Sunday.
Monday, he has an appointment with the oncologist to flush his port and look at his counts. Judging from his ability to rival the Energizer Bunny, I don't foresee a problem with his counts.
Please keep Jeff in your prayers for continued good health.
Thank you for stopping by to check on him.
Connie
Sunday, January 22, 2006 11:47 AM CST I can't believe it's been almost a month since I've updated Jeff's page. Sorry about that.
As previously mentioned, Jeff finished his treatments the last week of December. He was subsequently admitted to the hospital due to neutrapenia. His white blood cells were extremely low and he had a sinus infection. He was admitted for 3 days to provide fluids and IV antibiotics. He is doing much better.
He had his scans last week on 1/17 (MRI) & 1/19 (PET scan). We received the results on 1/20. Unfortunately, the scans were inconclusive for new or active disease. The PET scan was clear, however, the MRI showed the inumerable lesions as before, some of which have fatty replacement (meaning dead tumor) and some which remain high intensity (active tumor). This is consistent with mixed response to the chemotherapy.
His oncologist gave him 3 choices:
1) Temporarily stop chemo for 6 weeks. Then scan again to determine if the highlighted lesions have subsequently succumbed to the chemo.
2) Continue with a low dose, oral chemotherapy of Etoposide. 3 weeks on and 1 week off. Scan again in six weeks.
3) Continue with the current chemo regimen and scan again in six weeks.
Jeff, of course, wants so badly to take a break from chemo altogether, due to the increasing physical consequences of the treatment. This scares me but Jeff is an adult and he has the last say in his treatment. I totally understand that he needs a break from treatment. Because the tumor is so aggresive, not knowing if the lesions are active and stopping chemo may potentially allow the the cancer to grow or spread.
It is so hard to be presented with choices that have a direct impact on your child's life. It's difficult for the oncologist to predict a positive outcome given those choices, let alone a patient.
In the meantime, Jeff will go about the business of being Jeff. Going to school and enjoying his life.
Please pray that Jeff's choice helps to extend life indefinitely. Thank you for stopping in to check on him.
Connie
Sunday, December 25, 2005 5:11 PM CST Hi Everyone and Happy Holidays!
I know with everything that's going on during the holidays, I won't be able to update again until after the new year.
Jeff is doing good. He just returned from his 2nd trip to Sin City (Las Vegas). This time he went with 4 of his good friends. I'm sure I'll never know all that happened on the trip, but he sure had a great time.
He will be pretty busy through Christmas visiting relatives on both sides of the family. He starts his last 2-day inpatient chemo tomorrow - 12/26. That stinks! I hope he'll recover in time to ring in the new year with his friends. This is his last treatment until scans in January. They will determine, at that point, if further treatment is necessary.
Jeff went to the oncologist Friday for some routine tests before his hospital stay tomorrow. She gave him a clean bill so he can be treated. Sometimes if his counts are off, they have to postpone treatment. We've been pretty fortunate this year that it's only been postponed once.
He'll have his after treatment scans 1/17 & 1/19. Please keep Jeff in prayers that these scans reveal that he's in remission. Please also pray that he will not have to endure any treatment in 2006.
Thanks for stopping by to check on Jeff. Merry Christmas and Happy New Year!
Connie
Monday, December 12, 2005 9:41 AM CST Jeff made it through chemo relatively unscathed. Although we just remembered that he did not receive his Neulasta (a drug that helps boost his white blood cells). So he's pretty much "grounded" from visitors and going out until we can get the medication.
He was upset to see his Brownies lose again yesterday in the battle of Ohio against the Cinci Bengals. It was a pretty awesome game and we thought we would pull through. So he's drowning in his sorrows.
Jeff's looking forward to his trip next week to Las Vegas. It should be pretty fun with his friends. I hope this time he comes back a winner.
Take care and thank you for visiting. Let Jeff know you've stopped by and sign his guestbook.
Connie
Friday, December 9, 2005 4:48 PM CST With all the holiday preparations, I've completely neglected to update Jeff's site.
He finished his last day of his 10-day treatment today. He has handled this round a little better than the last. He is suffering from some c-diff and he's tired, but his spirits are up.
The Clinic had a Christmas party for the patients on Tuesday, 12/6 (Jeff's Birthday!. They passed out gifts and also gave Jeff a cake and some hockey related items. He made out like a bandit. Typically, we go out to eat for birthdays, however, Jeff wasn't feeling up to it, so we hung out and home.
Jeff' semester, in a sense, ended when he began his chemo treatment. He's planning a trip to Las Vegas for the winter break, This time he and four of friends are going. He really enjoyed the last trip, but there's only so much you can do with your mom. He's excited about this trip.
Again, thank you for all your thoughts and prayers. I know that's what sustains him.
Take care.
Connie
Saturday, November 19, 2005 9:32 PM CST Things have been going well for Jeff. He had a relatively easy week of classes. He's still trying to catch up on all that he's missed, or at least I hope he catchin' up.
He went to a Night at the Races with his friends family last night. Although he didn't win anything, he had a pretty good time. Today, he had a bunch of the guys over for the OSU v. Michigan game. I had to leave, because there was just too much testosterone in the house. It was not bad, I went to the Christmas Connection and got a head start on some shopping.
Jeff is putting the final touches on the Turkey Bowl. This is an annual football game between different graduating classes of Twinsburg. The game is Wednesday, so wish him luck. Tomorrow, he'll be going to the Browns game with his Uncle Val and cousin Tino. He's pretty excited. He's a huge Brown's fan.
Jeff's next 10-day outpatient treatment begins 11/28. Please include in your prayers that he does not have any of the nasty side effects or neutrapenia.
Have a very HAPPY THANKSGIVING!!!!!!
Take care.
Connie
Sunday, November 13, 2005 6:38 PM CST I like when I can I write an entry where things are relatively ok with Jeff. Despite a few aches and pains, he's doing well. He's been busy catching up with all the schoolwork he had missed with chemo and neutrapenia.
I think he's a little bored because football is over. He is now coordinating the "Turkey Bowl", which is an annual event of guys getting together to share testerone on the football field. Jeff has played in this game since the year he graduated from high school. So if you like to be included in the game, give Jeff a call.
Thank you all for you prayers, they do indeed sustain Jeff.
Please add Jeff's Step-Uncle Frank to your prayers. He has brain cancer and he's not doing very well.
Thenk you.
Connie
Thursday, October 27, 2005 4:12 PM CDT I also forgot to ask everyone to pray for Jeff's grandfather. He had an angioplasty and 2 stents implanted yesterday. We're concerned, because he had a 5-by-pass surgery last year. He came through with flying colors and he's home recuperating nicely.
Thank you for keeping him in you prayers along with Jeff.
Take care.
Connoe
Thursday, October 27, 2005 3:57 PM CDT It's funny, Jeff called me up and asked me if I was drunk when I wrote the last entry. I apologize, but I've been medicated and things can get a little loopy for me.
Jeff is doing fine. He suffered from neutrapenic fever last Monday and had to be rushed to the hospital. They started IV fluids and antibiotics.
He's been going to school this week. He attended his football banquet and they thanked him specially. This week he's planning to go to OU for Halloween. He's going as "Mr. Clean".
Again I apologize for the mixed up message last week. Please stop by and let Jeff know you're thinking of him.
Thank you.
Connie
Monday, October 24, 2005 1:18 PM CDT It has been a pretty eventful week in our househould. Jeffrey's initial week of cheno went a little worse than antipated. We we were involved in an accient on the way to one on the tretments. There is nothing fim about that. Everyone was OK, but it we a lille bit of a horrowing experience none the less.
Jeffs' step-father Stu is still recuperting from the Guillane Barret sydrome. It turned out to be a mild case. Why is it that every one in my family has to come up with with diseases or syndromes tht are 1) hard to pronounce or 2) of hard to cure.
Jeffrey's 2nd week of treatment was a little rough as he started suffering from stomach discomfort. Of course this didn;t stop him from cocaching.
He did experience his forst neutropenic fever in a while. I had to take him back to the hosipital. Of course, the kep hime and started with the ambiotics and iv fluids. He was in Until his counts came cup and his temoperature help until.
KJeff's doing fine know. Please stope by and say
hi.
0
Wednesday, October 5, 2005 12:46 AM CDT I apologize for not updating earlier, it's been a hectic week.
We received the results from Jeff's MRI and it shows "near complete resolution of signal abnormalities within the vertebral bodies". We couldn't have asked for better news!
Jeff will continue with this course of treatment until the end of December. His oncologist suggested that he be scanned at the end of treatment and then again every 3 months. Jeff and I kind of looked at each with fear. This is where he has gotten into trouble in the past. The oncologist then agreed to scan him every month after the end of treatment. She is going to also include a PET scan as the PET scan can identify smaller abnormalities. That was a sigh of relief.
Chemo has been a little rough this week. He's been tired and nauseous. But he's still making it to practice. Except for Monday. We were involved in a 3-car accident on Monday on the way to the Clinic. We were the middle car, so we have damage to the back and the front of the car. Jeff bumped his knee and his back is a little tight and I have some chest and neck strain, but other than that, we're fine.
Please pray that Jeff makes it throught this week of chemo with minimal effects. He has to start all over again next week.
Thank you.
Sunday, October 2, 2005 6:24 PM CDT Jeff's been keeping busy, as usual. While taking oral chemo, he's still going to classes and coaching. His team won again against a neighboring school 30-8. It was pretty incredible. Jeff really enjoys being on the field with the boys and they like being with Coach Newbauer.
Friday, Jeff had a rehearsal dinner for some friends that married on Saturday. He really had a great time this weekend. For those of who see Jeff this week, ask him about how much his brother -Alex enjoyed the wedding. Oh yeah, by the way, Congratulations Jamie & Kelly & Liz. We wish you much happiness forever.
We find out the results of Jeff's MRI tomorrow. Jeff starts his 10 out-patient treatment this week too. Please keep him in your thoughts and prayers.
Thank you so much for stopping by and letter Jeff know you're thinking of him.
Take care.
Connie
Tuesday, September 20, 2005 1:27 PM CDT I know I repeat my self when I state that Jeff amazes me, but he continues to be an inspiration.
He went to the oncologist this past Friday. He indicated that he wanted to postpone his next chemo dose until October 4th (he's in the wedding of his good friends- Kelly & Jamey on Oct. 1). The doctor agreed on the basis that he start some oral chemo until that time. So yesterday, he began taking etoposide. He'll take this drug daily until he goes for his regular 10-day outpatient treatment on October 4th. He'll continue his class schedule and his coaching schedule during this time.
Which reminds me, Jeff's 7th grade team won their 1st home game 16-0. I was told by several of the parents how great Jeff is with the boys. He really does have a way with them. There was a time when I would say "Thank you" because I thought I had something to do with Jeff's actions. Now I believe I say "Thank you" for Jeff, because he has come into his own and he's responsible for the wonderful man he's become.
Please keep Jeff in your prayers as he continues his treatment. I know deep in my heart that your prayers are responsible for Jeff's ability to "live in the moment" and live life on life's terms. Thank you very much.
Connie
Sunday, September 11, 2005 11:09 AM CDT I've been down & out for the past couple of weeks so I haven't been able to update, but Jeff is doing great. He always amazes me.
He had his inpatient treatment scheduled for August 26th, however, he had some swelling in his left leg. So all day Friday, the 26th and into the wee hours of Saturday they performed diagnostic tests. Late Saturday afternoon they still had not determined the actual cause of the swelling, so they started his treatment. They moved up day 2 of treatment so that he was able to go home Sunday night. He so badly wanted to start school on Monday.
His oncologist has been following Jeff every Friday since. They are saying that the swelling in his leg is a condition called myositis. However, they say that with a question mark. There are other symptoms that usually go along with myositis and Jeff is not displaying those symptoms.
The good news is that the MRI taken during his hospital stay indicated marked decrease in the lesions of his left leg. That means the chemo is working!!!!
As I stated earlier, he truly amazes me. He's been going to school and he continues to coach both the 7th grade football team and his cousin Tino's youth football team.
The family (sans me) went to Casino Windsor last weekend to celebrate Alex's 19th birthday. They all had alot of fun and brought me back souveniers.
Thursday, August 25, 2005 1:14 PM CDT I'm sorry for not updating recently. I really have not felt much like being on the computer.
Jeff is doing great! He has been coaching the 7th grade football team at the Middle School and helping out with his cousin Tino's team. He's gone pretty much every day from around 2pm to 8 or 9pm.
He's moved the majority of his things to his house in Kent. I'm a little disappointed with his room situation, as he has the smallest room in the house. He went today to buy his books for his classes. You would think, having to buy books for 4 kids, you'd get over the sticker shock. I just hope, they can sell them back at the end of the semester.
Jeff has his inpatient chemo tomorrow. He'll be in for 2 days. He tolerated this pretty well the last round. Again, I believe it was due to all of your prayers. Please continue to keep Jeff in your prayers as he undergoes treatment. Please also pray for another Rhabdo-Kid - Jason Archer. Jason was looking forward to starting college next week and he took a turn for the worse today. Please visit his website and let him know he's in your prayers - www.caringbridge.org/tn/jasona.
Let Jeff know you stopped by signing his guestbook. He looks forward to reading your posts.
Thank you.
Connie
Saturday, August 13, 2005 10:53 AM CDT Aside from some side effects that kept him sidelined in the earlier part of the week, Jeff completed this round of chemo pretty unremarkable. He missed 2 morning football practices early on but then he finished out week in 80-90 degree heat. He so amazing.
His weekend is already jam-packed with things to do. He's going to his grandfather's company picnic today and his friend's wedding reception tonight. Tomorrow, he's golfing in the morning and going to the Indian's game with the Cleveland Clinic in the afternoon. He's moving back to school on Tuesday, so Sunday night and Monday, he'll be packing.
His next treatment will be inpatient the weekend before school starts. In the meantime, he'll continue to coach football and hang out with his friends.
Please continue to keep Jeff in your prayers and ask God to place his healing hand upon him.
Thank you.
Connie
Friday, August 5, 2005 1:25 PM CDT Jeff has been handling this round of chemo so much better than the last round. His treatments last until about 1pm and then he naps for a little bit and goes out for the evening. I'm so amazed!!!!
He's had a pretty active week. Monday, he slept most of the night because he had such a hectic weekend. Saturday, he went to Geauga Lake Amusement Park during the day and then he had a date in the evening. Sunday, he worked for a little in morning and cut the grass in the afternoon and than he organized a pick-up baseball game with about 18 of his friends. After playing baseball, he went to play tennis with his brother - Alex and Alex's girlfriend - Rebecca and his step-brother - Steven's girlfriend - Lauren(OK, I'm tired).
Tuesday, after chemo, he took a nap and then went to a coaches meeting at a local hangout. Wednesday, after chemo, he went looking at motorcycles, as he obtained his temporary license last week. Thursday, after chemo, he went to the Indian's game and tonight, after chemo, he'll spend the evening out with friends.
He just wants to go, go, go. What an inspiration he is to those of us who don't do half as much and are not suffering from cancer. I don't know how he musters up the energy. It must be from all of your thoughts and prayers. So again, I thank you from the bottom of my heart. Keep 'um coming!!!! Please remember Jeff in your prayers as he continues treatment next week too.
Take care.
Connie
Thursday, July 28, 2005 2:29 PM CDT I apologize for not posting recently. Jeff has been doing great. His chemo was pushed off a week and will start next week - 8/1. Again, this is the 10-day treatment.
He started to help coach the middle school football team this week. This is truly a dream job for him. I'm not sure how it will work when he starts school next month, but he says he'll work around school and chemo.
He has been keeping active and going out nearly every day. He amazes me. This week alone, he's gone water skiing, played sand volleyball, gone golfing twice, had late night poker night and has gone to football practice every day for 2-3 hours. I wish I had 1/4 the energy and the motivation.
I know your thoughts and prayers are what helps sustain him and keeps him going. So thank you very much.
Please continue to keep Jeff in your prayers for his upcoming treatment.
Take care.
Connie
Saturday, July 16, 2005 9:59 AM CDT Jeff has recovered pretty quickly from his chemo last week. I attribute that to all the prayers. So Thank You!
He's had a pretty eventful week visiting with friends and family. As a tribute to Jeff's attitude, he has so many friends who care about him, he feels guilty when he can't make time for all of them. He wants to spend time with everyone and it's hard for him to coordinate all of the activities.
Jeff has decided to continue with college this fall. He's moving into a house (off-campus) with 3 friends. I will definitely be sure they get a crash course and have specific and ample instructions on chemo side effects. As well as, the fastest routes mapped to the nearest Emergency Room. (God, am I going to dread this move.)
I've spoken to many people who have suggested I remember that this is what Jeff wants. He does want, more than anything, to live a "normal" life, to be independent and on his own. As a mother of sick son, that is difficult to accept, but I realize that mentally, it's best for him. As long as he's willing, and is able, I cannot deny him his wish.
Jeff's next treatment is a week from Monday - 7/25. This is a 10-day outpatient treatment which is pretty rough. Your prayers helped Jeff recover quickly from last weeks treatment, so hopefully, they will help him recover quickly from this next round.
We also ask you to include Orville's family in your prayers. Orville lost his battle with Rhabdo last week. He was a pretty amazing kid. You can see his story at www.caringbridge.org/ca/orville.
Take care.
Connie
Saturday, July 9, 2005 11:16 AM CDT We had to spend an extra night in the hospital, so we just got home. The doctor was concerned with the dose of chemo that Jeff was well hydrated before leaving. He didn't finish his treatment until after 8pm on Friday, so they decided to keep his fluids pumping and just have him spend the night. It was best, because he was pretty nauseous.
As some of you may know, we transferred to the Children's Hospital at the Clinic and this was his first hospital admission in that ward. It made me appreciate how wonderful Jeff is as a patient. Some of the adolescents in that ward are quite argumentative with the nurses. I'm sure the nurses thought Jeff was a walk-in-the-park. Jeff pretty much sleeps the entire time and when the nurses ask him for anything, he's very cooperative. It is pretty funny to see this 6ft, 245lb man in the ward among all these much smaller kids.
Anyway, he's home now and in bed, where I imagine he'll stay until sometime Monday. Please keep him in your prayers that he recuperates quickly and that God lays his healing hand upon Jeff. Please let him know you stopped by signing his guestbook. He loves to read your notes.
Thank you.
Monday, July 4, 2005 9:26 AM CDT I realize I haven't updated recently. Jeff decided to go on a vacation with his friend - Chris's family. They went to Myrtle Beach. Jeff had a good time. He was able to relax and forget about cancer for awhile, except for his arsenal of medications (that I'm still not sure he took when he was supposed to).
I'm glad he was able to get away for awhile. It's hard to find times between treatments where he doesn't have to worry about getting sick or low counts. I worried enough for the both of us.
He was very thoughtful and called me everyday to let me know how things were going. How many 21 yr old men would call their mother every day. He's not a momma's boy, but he knew I'd be concerned. He's such an AWESOME son. It's great to have him back home.
Jeff will be admitted on Thursday for 2 days for treatment. This is a rough treatment and it generally takes him a few days to recoup.
Please keep him in your prayers and ask that God place a healing hand upon him.
Thank you.
Connie
Wednesday, June 22, 2005 5:08 PM CDT It's been an EXHAUSTING couple of days at the Clinic. Yesterday, Jeff had scans ALL day. I don't understand how a healthy person can be expected to endure these marathon tests and follow up appointments, let alone some one suffering from a life-threatening illness.
As some of you may know, Jeff is claustrophobic. His MRI (totally enclosed) was almost 3 hours. This was after enduring a lengthy wait for his CT Scan. I usually go in the room with Jeff when he has MRIs (usually 1 hour), even when he's medicated prior to the test. Yesterday, because of the way the tests were scheduled, we didn't have an opportunity to pre-medicate. It was rough, but he endured the entire test!!! He is pretty awesome. I felt so bad for him as I could barely tolerate the time. I just remembering saying (probably every 5 minutes) "I'm sorry baby. Hang in there. They're almost done."
Today, was just as grueling. Jeff's first appointment was at 9am (we left home at 8am)and we didn't get home until after 5pm. This is truly a job.
The scans revealed that "the overall extent and conspicuity of the metastatic lesions have decreased since the last scan." So that is a good thing. The game plan now is to keep him on this regimen for as long as he can tolerate it or 6 months, whichever comes first.
This has presented a little dilemma for him. He wants so badly to move into an off-campus house with his friends and go back to school in the fall. He already registered for school (full-time) and put a deposit down on the house. I feel bad and really want him to be able to go to school, however, I'm trying to be realistic. His 2-week treatment is rough. He didn't even come out of his room during that period. He didn't want to be with his friends. He didn't want to talk or be touched. The doctor said that subsequent treatment would be more grueling as the effects of chemo build up in his body. That doesn't even take into consideration that he'll be inpatient for 2 days every other 3 weeks. I just don't know how he'll be able to manage accomplishing this semester.
Please let Jeff know you're thinking of him and offer your prayers as he struggles through his treatment.
Thanks for checking in.
Connie
Friday, June 17, 2005 1:55 PM CDT Today was supposed to be Jeff's last treatment for this round, however, much to his chagrin, that did not happen. He started complaining of a burning sensation around is abdomen and back and thought perhaps it was some irritation from the shirt he was wearing. We checked the shirt and there wasn't anything there. He brought it up to the nurse and it was suspected that he may have shingles. Shingles can present with a burning sensation prior to any skin eruptions. So we have to wait and see if he has a breakout.
If he breaks out, we have to take him to the ER for IV antibiotics. If he does not break out, we can attribute this irritation to neuropathy (a side effect of the chemo) and he'll have today's missed dose of chemo next week.
Just so you all know, Jeff got so many compliments on the shirt he was wearing today. It boldly states "CANCER SUCKS". Everyone on the floor made a comment of how great the shirt was and wanted one for themselves. (Thanks Kelly!!!)
I want to take an opportunity to thank Alicia & Loki for stopping up to visit with Jeff today. Some of you may recall that Loki is a Rhabdo-Kid too. Last year, Jeff visited with Loki during Loki's final round of treatment. It was pretty comical to see these two together. Loki was 2 years old last year and about 2 feet tall and probably about 20-25 lbs. Jeff, on the other hand, is 6 ft. and 250 lbs. Both of them, with their bald heads, walking down the hall was a page right out of Austin Powers. Loki was a "Mini Me" of Jeff.
The visit was cut short as it was realized that Loki had not yet had the chicken-pox and if Jeff has shingles, he could transmit the virus to Loki. The visit was short and sweet.
Loki is having scans next Thursday. Please pray they are CLEAN. Jeff's scans are Tuesday, we'll find out the results on Wednesday. Please pray that Jeff's lesions have shrunk and or disappeared. God, that would be great!
Thank you all for your words of encouragement.
Connie
Wednesday, June 15, 2005 6:50 PM CDT I want to thank everyone for leaving Jeff messages in his guestbook. He hasn't had the energy to sit at the computer to read your thoughts and prayers, but I read them to him and it brings a smile to his face. So Thank You! Thank You! Thank You!
Smiling has been a challenge for Jeff this week. He is not feeling well at all. He started chemo all over again on Monday. He had another allergic reaction, which we attribute to the one chemo drug - Vineralbine (we call it vanilla bean). He only receives this drug on Mondays during this regimen.
Anyway, the stomach issues and the nausea have been a little worse this week. So he hasn't been his old jovial self.
I do have to share that Sunday we went to a "healing doctor". Dr. Nemeh has been in the news recently because so many people claim to have been healed by him. The healing mass started at noon on Sunday at St. Basil's in Brecksville. Our tickets, which he provides free of charge, were for the 6pm-9pm session and we did not get seen until almost 1am. It was a very long day. There were so many speakers offering their testimony of how Dr. Nemeh healed them or someone close to them. It was pretty amazing.
Jeff has a pretty humourous story to tell of the ordeal, but wait to ask him. (He's not in the mood to talk this week.) He claims he didn't feel anything during the healing, however, we pray that Dr. Nemeh worked his magic on Jeff.
Please ask that God worked through Dr. Nemeh and placed his healing hands on Jeff. Please let Jeff know you're thinking of him in his guestbook. He appreciates your posts tremendously.
Thank you.
Connie
Saturday, June 11, 2005 9:24 AM CDT Jeff has endured his first week of chemo. It's been a struggle but he's such a trooper. Even though he doesn't feel well, he's trying his best to put up a good front.
Yesterday was probably the worst day with nausea and stomach issues. We are trying to combat those effects with different medications which make him tired. We thought we were going to be able to see "Mr. & Mrs. Smith" last night, but the week took it's toll and he stayed home and watched movies.
He woke up a few times during the night with a stomach ache and came in my room around 6:30am to ask for more meds. We came downstairs and he made himself something to eat and cracked his usual jokes. He's such the comedian!
Those of you who know Jeff, know that he's pretty funny. He finds humor in all that happens. His expressions and impressions make friends, family, strangers and everyone laugh and his smile is a beacon in any room.
Jeff will have the weekend off and return to treatment for another week on Monday. Next week will be hard as his counts will start to drop. This will make it even harder to fight the effects of the drugs.
We ask that you keep him in your prayers this week. We see so many other children who endure so much more than Jeff. We realize it's your prayers that keep him going during the difficult times.
Thank you.
Connie
Thursday, June 9, 2005 3:55 PM CDT This has been the longest week. Jeff's treatment has not been fun. We anticipated that the outpatient treatments would last approximately 3 hours. However, they have been trying to hydrate him and with the flushes and anti-nausea medications, the treatments have averaged over 5 hours per day, not counting travel time. Needless to say, Jeff is exhausted.
We had a Relay For Life fundraiser yesterday at a newer establishment here in Twinsburg. It went extremely well. The Blue Canyon offered a 4-course meal with wine pairing. Before every course, the Executive Chef came out and explained the course and the wine chosen. He was pretty entertaining. We had a silent auction that raised additional monies for Relay.
Jeff was tired and I knew he was pushing himself, but he was a trooper. He was very appreciative and stood up and thanked everyone for all of their support. You are AMAZING, JEFFREY!!!!
Please be sure to sign Jeff's guestbook and continue your prayers.
Thank you.
Connie
Monday, June 6, 2005 7:34 PM CDT Today was a very long day. Jeff's appointment was at 9 am and we didn't get home until around 5pm. The appointments were backed up and then he had to have his bloodwork done to see if his counts were OK for chemo. By the time that was all said and done it was almost noon and he was just starting the chemo.
The Children's Hospital does things a little different than the Taussig Cancer Center so it will take some adjusting.
He was doing pretty good until we headed home. Then, he began to have some kind of allergic reaction to the drugs. I called the nurse practitioner and she confirmed with the pharmacy that his reaction was not an anticipated side effect. He is itching from head to toe. They have him on Benedryl to see if that will help. If not, they re-evaluate tomorrow to see if there is something else causing the problem.
He remains positive and to tell you the truth, he looks like Curly from the Three Stooges trying to scatch his face.
He's pretty funny.
We love you Jeff!
Please pray for God to place a healing hand upon him.
Thank you.
Connie
Sunday, June 5, 2005 10:56 AM CDT Jeff is AWESOME!!!!
We had our local Relay For Life this weekend. Our Relay's preliminary total is $150,000 with donations still coming. Our goal was $115,000. Jeff's team - Team Newbe, raised over $20,000. His team is still collecting donations, so I'm sure they will far exceed $20k. In addition to being the Top fundraising team at Relay, Jeff and his brother Alex were recognized for being the most spirited and credited with contributing to the events success. Jeff's step-brother Steven (Charlotte Rose) was first-runner up in the Miss Relay contest earning $302 ($4 less than the winner).
Relay started Friday. Jeff was up the entire time (over 22 hours) participating in a majority of the events. His team held several different onsite fundraisers earning close to $2,000 at the event. Jeff is pretty hoarse from yelling "Cookies", "Relish" for the last few hours of the event as he walked around the track pulling a wagon and selling his wares.
After Relay, he napped for a couple of hours and then took his cousin - Tino to the Akron Aeros game. After the game, he briefly stopped at a friend's graduation party. This morning he got up early to head out to the Muirfield Golf Tournament in Columbus.
Tomorrow, he'll start the new chemo drugs. Irinotecan & Vineralbine administered outpatient Monday through Friday for the next 2 weeks. I'm sure this was his motivation to keep going during the events of this weekend.
Please continue your prayers for Jeff as he begins his treatment this week. Please ask God to place a healing hand upon Jeff.
Thank you to all that contributed to Relay For Life.
Connie
Monday, May 30, 2005 7:45 AM CDT Jeff is doing much better. His mouth sores are subsiding and his pain has been manageable. He has had a full plate this weekend.
He had an opportunity to fly in a hot air balloon at the Blossom Time festival on Friday, unfortunately, the weather did not cooperate and he was unable to go up. He was disappointed but he learned how much goes into flying a balloon.
He's been visiting with friends and family. Yesterday, he shot 18-holes with his uncles and brother. It's hard to keep a good man down.
Jeff will be treatment-free this week as he prepares for Relay For Life. He's been doing a great job raising money and is one of the top fund-raisers so far. This is before his big fund-raiser next week (6/8) at the Blue Canyon Restaurant, here in Twinsburg. Tickets are going quickly. If you're interested, tickets are $75 a person. You'll receive a four-course, wine-paired dinner and can participate in a silent auction. We're hoping to make this an annual event. All proceeds will benefit the ACS - Twinsburg Relay For Life.
Thank you to everyone for all the well-wishes he's received over the past couple of weeks. Your cards and sentiments posted in the guestbook here have meant so much.
We thank you for keeping Jeff in your prayers.
Take care.
Thursday, May 26, 2005 9:57 PM CDT Jeff's hanging in there. He has endured the mouth sores and the nose sores, and we won't say what other sores. But he's hangin' in there.
Jeff is such an amazing young man. I know I probably say that alot, but I'm the Mom and that's my job. I can see his pain and I know how he works through it so he can please others. He'll make a great salesman one day!
He has one more day of radiation. He's been tolerating the side effects. He finally had some energy today. After a long nap, he went to the Indian's game. Mind you, he text pictured me on my phone at least 5 times. (I hope that's no indication of how boring the game was.)
Jeff has an opportunity to fly in a hot air balloon tomorrow at Chagrin Falls Blossom Time. He's really excited. Please pray that the weather will permit him to fly.
This next week is treatment free. Relay For Life is next weekend (6/3 & 6/4). If you're in the Twinsburg area, please stop by and help us fight.
Please pray that God's healing hand will be placed on Jeffrey and that this to shall pass.
Thank you.
Connie
Tuesday, May 24, 2005 4:15 PM CDT Jeff started radiation yesterday. This radiation is so different than his last round. They are using traditional radiation this time versus the pin-point radiation used his last round. The radiation they aimed at the spine passes through to the abdomen and makes him quite nauseous. He did not experience anything like that the last time. And with him suffering from the mouth sores (mucousitis) it makes him feel miserable all over.
His second treatment, today, was not so bad, however, I pretty |
