|
||||||||||||
Click here to go back to the main page.
Click here to view older journal entries.
Tuesday, July 15, 2008 1:29 PM CDT
Dear Family and Friends,
The summer is flying by and our family is having a great time together.
John Michael is home from his cross county road trip. He was gone a month and had a blast! The link is still up at the bottom of the Caringbridge home page to his blog. He blogged about half of the adventure; complete with pictures. He ended the trip at Camp Sunshine...his favorite place away from home. He is now on their teen council and hopes to attend retreats this fall and next spring.
During his trip, we had our hands full with preparing for Anna's Ballet Recital. She put in a lot of hours of practice (a.k.a. Mom put a lot of miles on the car driving into Savannah), but it was all worth it. The recital was beautiful and lots of fun for Tim and I to watch (pictures on picture link). It is so nice to know Anna has found her nitch. She adores her teacher and loves hanging out with Rachel at practice.
We are eagerly anticipating our trip to Lighthouse next week on the Gulf Coast. This will be our third and final year going as a family. We hope to volunteer as family partners in the future. It is our favorite family activity...we always come home refreshed and closer for the experience.
On the medical front, John Michael couldn't be doing better. The hip replacement has helped to make his days more painfree and mobile. He is scheduled for Survivor Clinic when we get back from Lighthouse. His labs look great and he is closer to finishing his re-immunizations (he just had 8 more shots last week). He is lifting weights regularly with Tim (those sessions are filled with lots of goofing off) and starting a bit of a cardio program.
We all start back to school on August 6th...John Michael's 17th birthday. John Michael will be in 11th grade at ECHS and Anna will be homeschooled for her 5th grade year.
Reflections of HOPE is really growing. Our team of blanket makers has really increased. In fact, we have so many blankets being made, we can now offer blankets to the newly diagnosed child and their siblings! We are still donating blankets and supplies to the Ronald McDonald House and may have a meal program rotating soon. I am so thankful to the many ladies at Savannah Christian, Threads of Comfort (Skidaway Island Baptist Church) and my mom for their many hours of sacrifice in creating these precious blankets. I am able to personally deliver all these blankets through my volunteering with CURE Childhood Cancer. I am so thankful to my friend Kristin Connor, for all her hard work at CURE and her vision for research and family support. Oh for the day when we can beat this beast called cancer. In the meantime, there are hurting families who need resources and compassion.
Thank you for taking the time to continue to check on our family. We are blessed to have so many friends and family.
With Love,
Kim
Thursday, May 15, 2008 2:30 PM CDT
Dear Family and Friends,
We think the virus is finally out of his system...whew. As of today, he has been fever free. The virus ran its course over 10 days. All the cultures from his blood work came back negative. This is really great news. One of the doctor's fears was that he might have a bacterial infection in his blood. Because it happened right after his hip replacement, the possibility was very good that had it been bacterial, it would have infected the new hip hardware requiring it to be surgically removed and a new one put in. I didn't share that news as we were waiting because it was simply too overwhelming to comprehend. Through the last three years, God has given us the ability to get through every tough trial, but not the "maybes" or the "worry about what might happen". It is tough to control your thoughts, but I am a firm believer in only thinking on those things that are concrete and true. The facts are usually all I can handle, not the "what ifs" or the "what could be" or "what might happen". With all that said, John Michael is feeling great. He is even going back to school tomorrow!
This week has been very busy. As he was recovering from the virus, he has had all his staples removed, began walking without crutches, and met with his pysical therapist three times. Today was the last day of pt and home health care.
On the non-medical front, he has worked hard to catch up in school. A big thanks to all his teachers at ECHS; especially Mr. Zittrourer. He has done a great job helping JM complete his tenth grade year. There is only one more week left in classes and John Michael hopes to make it each day. He will leave the day after classes get out for his big trip. The link to his on-line blog is at the bottom of this homepage. If you are interested in following his trip across the country this summer, please click on the link. He has promised to update often with pictures and quick notes on the day's adventures. We are so excited that he is getting to make this trip with his grandparents. He spent many nights in the hospital planning this road trip with Pops. I can't begin to imagine how much we will miss him, but it is a wonderful opportunity and we are all excited for him.
Another special moment of our week was getting to spend some time with General Laposata. John Michael and I met him for a relaxing breakfast as he was passing through town. He and his wonderful wife, Anita, have been longtime friends of my grandparents. We all treasure our visits with them as they pass through Savannah on some of their many road trips. After catching up, John Michael also learned that there is still a possibility of pursuing his dream of military service. There are many barriers, but as General Laposata reminded John Michael; he has already had many miracles. God has a definite purpose for John Michael's life and it is exciting to be a part of it... to watch it unfold. We will continue to pray for John Michael's direction in pursuing his purpose.
Thank you all for your many prayers and your steadfast devotion to walking this journey with us. May 19th marks the 3rd anniversary of the bone marrow transplant. It is also the day that "officially" marks John Michael's remission from AML. We are so very grateful for the gift of every day.
With Love,
Kim
Thursday, May 8, 2008 9:41 AM CDT
Dear Family and Friends,
We have a bit of a setback. John Michael started feeling bad on Sunday. By Monday morning, he was vomiting and had fever. We went Tuesday morning to Dr. Decker's office for bloodwork and an assessment. Everyone assumed we were dealing with a nasty virus. He was still sick Wednesday, but showing a bit of improvement. Around 9 last night we discovered his temperaure was 104.7, so it was off to the E.R. He got a room this morning around 4:30 at Memorial. He is still running a fever and has lost about 10 pounds; so he will be staying until he can kick this fever. We are waiting for his blood cultures to show us what is making him so very sick. With a temperature that high we are anticipating some type of bacterial infection, but for now we just wait. I'll post further information, at the bottom of this posting, later on tonight.
Please pray for answers to this high fever and freedom from fear for our family...
With Love,
Kim
Dr. Johnston came by around 4:30 and to our excitement, discharged John Michael! Since admission (and several bags of IV fluid) John Michael really came back around. The nausea is gone and the appetite is back. He is still running a bit of a fever, but there are some nasty virus' around right now that are accompanied by fever. His first blood culture should be back by morning. If it is negative, we can all let out a huge sigh of relief. If it is positive, we may have to be readmitted for IV antibiotics. Please pray this is nothing more than a really nasty bug and that John Michael can still leave for his month long trip on schedule.
Saturday Evening Update:
John Michael is still sunning a fever (nothing over 102), but so far all his blood cultures have come back negative. He is feeling much better.... just feverish. Since we are on day 6 with a fever, it is a bit uneasy to not be able to pinpoint a diagnosis, but we are still hoping this is nothing more than a virus that has to work its way out of his body. He sees Dr. Whelan on Monday to get the staples out of his leg and will continue to be under home health care next week. He is also hoping to get back to school on Tuesday.
Thank you for your prayers and concern. I will update when we know more.
Kim
Friday, April 25, 2008 7:37 PM CDT
Dear Family and Friends,
WE ARE HOME!!!!
John Michael made tremendous gains yesterday in physical therapy. He even walked all the way to the nurse's station with the aid of his crutches. Dr. Whelan came in this morning and removed his drain (on the hip) and asked if he needed to stay another day. He had no sooner gotten the words out of his mouth when JM said that he wanted to leave NOW. Our Backus staff was wonderful in making the discharge happen quickly. As much as we hate being inpatient (nobody likes being in the hospital), our special staff there at Backus still feel like family in the way they care for us all. John Michael had top notch care from his surgeon, to his nurses, to child life (the best job ever), to Ed The Magic Guy, to the techs. But even with all that care, we were ready to make a run for it!
Now we are relishing being back together. Our plans for the weekend include popcorn, movies, the Wii, and lots of rest. Home health care starts tomorrow to monitor his Cumidon levels and provide PT for a couple of weeks, then its back to school and then the best road trip ever for JM. Don't forget to follow his crosscountry trip via the Blog link at the bottom of the page (it will be linked in the next couple of weeks).
Thank you all for the many prayers you have spoken over our family... our boy. I wish that everyone facing trials had the kind of support system we have had. We are so thankful for all the sweet postings, calls, and cards as well.
I'll post new pics this upcoming week.
With A Grateful Heart,
Kim
Thursday, April 17, 2008 10:35 AM CDT
Dear Family and Friends,
I know we have taken a long break from updating, but we have some rather big news to post. As many of you recall, John Michael has had two hip surgeries (core decompression) in the last two years. These surgeries were performed on both hips in an effort " to buy time" before a total hip replacement was needed. His left hip surgery was almost two years ago and the right was last year. The recovery period was tough, but provided immediate relief from the increasing pain; as well as kicked back the need for the total replacement. Well, the left hip has now done all it can do. It continues to crumble and has put John Michael in almost constant pain. He has felt the intensity in pain change over the last two months, but waited until it became almost intolerable to agree to the surgery. Of course, we are having a hard time seeing him in so much pain, but as always he handles it well. Until this week, he had continued with his camera work at SCC on the weekends and was going to school every day. We spent the weekend tring to get him in to the Shriner's Hospital in Tampa (we lost his secondary insurance in October, and Shriner's accepts only what your insurance covers), but found out Monday that they don't perform total hip replacements. So we met with John Michael's wonderful pediatric orthopedic surgeon, Dr. McCartney, on Tuesday. He is so caring and compassionate; as well as being a brillant surgeon. He agreed that JM is in need of a total replacement on the left side, but said the x-rays showed the right is still holding up well. He feels like it probably hurts right now because of the extra weight John Michael is redistributing from his left side (he walks with a very noticeable limp). He feels like the replacement is out of his scope of specialty (not many kids need total hip replacements), so he recommended another doctor in his group, Dr. Whelan.
Dr. Whelan is a specialized hip surgeon. After doing typical hip replacements for 20 years, he trained and has become proficient in performing hip surgery with an anterior approach using the DePuy ASR XL Metal-on-Metal System. We were very excited to learn that this approach will significantly decrease John Michael's recovery time. An anterior approach will mean that no muscle will be cut through and the incision should only be about 3 inches long!
His surgery is scheduled for Wednesday, April 23rd at Memorial Medical Center. He should only stay at the hospital a couple of days. After coming home his goal is to only be out of school for 2-3 weeks. As usual, Effingham County High School is very helpful in transferring him to a homebound program with a neighborhood teacher.
Everyone's goal is that JM would stay caught up enough to get back in time to finish his sophmore year at ECHS on May 23rd. On the 24th John Michael is scheduled to leave with Grandma and Pops for a cross country road trip for almost a month! He has planned this trip with Pops for three years. Many nights were spent in the hospital with talk of this trip. It has served as a nice dream and escape from the grueling months of chemo and BMT. Now that the trip was in sight, no one was willing to sacrifice it for a stinking hip replacement! This anterior approach for his hip replacment is the answer to all of our prayers. Can you imagine how happy JM was to hear that he should be in fine shape for the trip...Dr. Whelan told him not only will he make the trip, but he will be in much better shape for it than he is now! :)
In other news, our family has continued to make many changes as we adjust to "life after cancer". It just hasn't been possible to go back to the old way of life. We are different people...all of us. Cancer has a way of turning you on your heel and changing your priorities. We spent a lot more time together and really try our best to stay focused on the things that are most important. One of the changes we have made is to homeschool Anna (John Michael's SuperSib). We began in November and have loved every minute of it. It is a lot of work, but so much fun. It is wonderful to feel like I am finally catching up on all that time I missed with her. She has added ballet to her list of hobbies and has so much fun going to class with Rachel. She has made so many new friends(she especially loves Taylor); as well as keeping in touch with ones she has known all her life. Her schedule keeps me on the go! We still have Petey; although we recently learned she also has cancer. I don't think she heard a word of what the vet told us because she is not slowing down (even though she is 14!). She has continued to run faster than any of us and digs out of her fence to get to our front door on a regular basis.
We try our best to reach out to others who are beginning this journey with a newly diagnosed little one. Starting next week, I will be available to meet with families at Backus whose children have just been diagnosed with cancer. As a volunteer with CURE Childhood Cancer (see link at bottom) I will meet with those families (who have agreed it is okay with them) and present them with a tote bag full of vital family support info and also a blanket that is handmade. (I have been blessed to be introduced to MaryAnn Tucker with Threads of Comfort. She and her wonderful group of special ladies, from Skidaway Island Baptist Church, have agreed to create blankets to be passed out with this new tote from CURE. If you or your group is interested in making blankets for this cause, please send me a personal e-mail, with BLANKETS in the memo line.) The goal is to meet with families after they get the news. We want to provide them with information, resources, and comfort. I still remember how I felt during that time...like my child was suddenly part of a group we wanted no part of. While I still wish JM was never diagnosed with cancer, I now understand that there are amazing people (all of you reading this) and resources that come with being a part of this world...CURE, Leukemia and Lymphoma Soceity, SuperSibs, Camp Sunshine, and Lighthouse Family Retreat to name a few.
Thank you for caring for our whole family. Dr. Vats is fond of saying that Surviorship does not start at 5 years... it starts at the day of diagnosis... and it is about the whole family... on all levels. I couldn't agree more.
Please pray that JM's pain will lessen, even before the surgery. We also ask that you pray for him to sail through recovery and get back at school and Savannah Christian even sooner than expected.
I will post new info at the bottom of this update after his surgery; as well as more current pictures.
With Love,
Kim
****Tuesday Night Update****
Well the big day is almost here. After spending the evening together, watching American Idol, we drove Anna over to Grandma and Pops' house to spend the next few nights. (Please remember to pray for Anna when you pray for John Michael. This is bringing back a flood of memories and insecurities.) It is hard to leave her, but it is supposed to be a very short stay. She was very excited to find out that Michaela will be spending time with her at Grandma's. Anna absolutely loves being with Michaela, so we are hopeful the time will fly by for her. (I also want to say a big thank you to the Davis Family for helping shuttle Anna around to Ballet and Co-op. It was a tremendous blessing for her week to stay as normal as possible.)
Although John Michael has been in tremendous pain this week, we have had some really good family time at home. He is actually really looking forward to tomorrow and the hope it brings.
We will arrive at Memorial at 6 am, in Day Surgery, for pre-op check-in and blood work. His sugery is scheduled to begin at 8:30. After surgery, he will go to recovery until it is time to move to a room. We have requested that he go to the Pediatric Specialty Unit instead of the Orthopedic floor. This is the unit that so diligently cared for him though chemo and all its harsh side effects. This unit's staff feel more like family than caregivers, so it will be very comforting to have them care for John Michael. This is all I know for now. I imagine that he will be in a good bit of pain (or controlled pain... thanks to pharmacy) from the surgical area tomorrow, but I believe in no time, he will feel like a new person because the deep hip pain that has been present for so long will be gone. This is our hope and our most fervent prayer.
I'll update after we get settled in our room tomorrow.
BTW, Since so many seem interested in John Michael's upcoming cross country trip, he has decided to keep a blog as they travel. We will provide a link to that from this Web site and if you're interested you can go there for pictures and updates!
Thanks for the tremendous support and prayers you offer our family.
With Love,
Kim
****Wednesday Night Update*****
Surgery Day
It has been one long day, but the surgery is behind us. I got up around 3 am to find that JM had never went to sleep! He was oober excited that the day had finally arrived and ready to get to the hospital. The blood draws in pre-op were all normal. I don't care how far in remission your child is, it always makes you let out a big sigh of relief to hear that his blood work is normal.
Surgery took place around 10 a.m. and we were talking to Dr. Whelan by 11:30. He said that the sugery could not have gone better! It was so incredible to see the new x-ray of John Michael's hip... his old x-rays showed holes and collapse throughout the hip... this one is whole and metal. One of our caringbridge viewers had dubbed him Auburn Ironman during his tough days of treatment because of his tenacity and love of Auburn.... now the name has a new meaning.
He found his way to a room about 2 p.m. and we are in the PSU... YEAH... back with our special crew at Backus Children's Hospital. It is in a new location in the hospital, but the same sweet spirits are here. His care has been exceptional.
The pain has been a bit more intense than he might have anticipated, but it should just be getting better by the hour. Tonight, phsical therapy even came in and let him know that he needed to push himself to do as much as he could. John Michael sat up in bed, then progressed to the end of the bed, then stood up and put weight on his left hip! He then needed a shot of morphine, but we were all so proud of his determination and drive. He then ate for the first time in 24 hours and then fell back asleep.
As I type this I am looking at him and praising God for the good things he has given us... the ability to weather the storm of childhood cancer, wonderful health care, a son who shows his true character in the face of hardship...with a great sense of humor, a daughter who showed courage in the face of fear when she was identified as the one who would give John Michael life saving bone marrow and who's smile begins my every day because she is our blessing, a husband who adopted John Michael and showed him that in all ways he is his son and who always puts his family first, a family who always rallys to do what is best for both kids, Freightliner who has been so good to us in regards to Tim's work, an army of prayer warriors who have fought the good fight with us, and many friends who have lightened our load in many ways. Thanks to everyone for your many prayers (Lisa, the hospital survival kit was a huge hit and your prayers were answered... no cath!!!).
Please continue to pray for rest and healing. We had forgotten how very exhausting it is to be in the hospital... we are already ready to make a run for it.
Anna Banana, hang in there and take care of Daddy tonight. We should be home on Friday in time for movie night with lots of popcorn and M&Ms. Bubba and I miss you and can't wait to all be back together again.
I hope you all have a blessed evening and thank you for checking on John Michael.
Kim
Sunday, January 20, 2008 5:04 PM CST
Hope all is well with all our wonderful family and friends. Things are great (and pretty normal) here. Enjoy the new pics.
The Osbornes
Tuesday, October 30, 2007 10:16 AM CDT
***November Update at bottom of entry***
10/30/07
Greetings Family and Friends,
Well as you can see, it took more like a couple of months, rather than a couple of weeks to write what may be our last journal entry. I say "may" because we anticipated last Spring's entry to be our last because of John Michael's need for a return to a normal, private life, but he has graciously agreed that it is fine to write a bit more in response to the many e-mails we received from our faithful prayer warriors and friends who wondered how "our boy" is doing.
John Michael spent his summer traveling. He went on a couple of road trips with his Grandma and Pops, Atlanta for Red Carpet Day and Camp Sunshine. We all took a two week vacation to Seattle to visit Aunt Dee (who generously donated her frequent flyer miles to get us all out there). Seattle was much needed down time for all of us. It was wonderful to spend so much time with Darlene going to movies, enjoying sunsets on her deck, taking ferry rides, and drinking lots of coffee! We came home feeling refreshed and ready for school to start.
John Michael began 10th grade and Anna is now in 4th. They have both achieved honor roll this 9 weeks and are seeking extra activites at school. John Michael ran for and was elected to the student council... we kept telling him, take advantage of the fact that everyone knows your name. They may not know who you are, but they definitely know your name! Anna has joined chorus and is loving being a part of the GT (gifted and talented) program at her school. They have both discovered new areas of service at church. John Michael now runs one of the cameras at Savannah Christian's first Saturday night service and then heads over to the LINK to meet with other high school students for discipleship. Anna is enjoying working with the three year olds during second service. She is also on the praise team for kid's church and currently going to lots of rehearsals for Mission Possible (the kid's Christmas production). Tim has found his place working with the 4th and 5th grade boys in small group. This area of service is so much fun because you get to know so many kids and their parents. Savannah Christian has helped me to develop Reflections of HOPE as one of the ministries the church offers. We bridge services the church offers to those in need at the Ronald McDonald House and Backus Children's Hospital. It has just got up and running, but we have already met the wonderful house manager at RMcD house, Kinnette. She has really opened the door for our church to help the house. We have a very special group of people who cook dinner once a month for all the families at the house. This group is led by Susanne, who heads up the In Time of Need ministry at SCC. I am so excited to be helping this special community and am just thrilled to go to a church that has such a passion to help the hurting. Special thanks to Kinnete, Susanne, Michele, Jim, and Yvonne for all their help, support, and prayers.
Another adventure our family was treated to was the Lighthouse Family Retreat 2007. We drove to the Gulf Coast during Fall break and spent a long weekend with some very special people. We were thrilled to find that our lodging backed up right to the white beach of Gulf Trace that led right into the beautiful blue waters of the Gulf of Mexico. We met so many new friends as well as seeing the familiar faces of those we have grown to love from last year's retreat. John Michael made new friends from King's Ridge Christian School as well as seeing a friend from Camp Sunshine. Anna hooked right up with Melinda's niece and is missing her and "Pinky" already. The whole weekend was a blast (expecially the talent show) and it was so hard to leave. We were seriously considering setting up a boiled peanut shop on the beach and living in our car! Both kids are begging to go to Atlanta soon to hang out with their friends. It sure is nice to make those trips now for fun rather than the weekly medical trips we used to make.
Just when you are tempted to believe that everything is back to normal, I am here to remind you that things can't ever be the way they were. To merely watch John Michael walk is a reminder that the medicines that saved his life have taken much from him. The x-rays show more collapse in John Michael's hips; signaling that hip replacements could occur anytime. By x-rays alone, he could schedule the surgery tomorrow, but we won't until the pain becomes unbearable. He really wants to wait until he's 20 for these hip replacements and Dr. McCartney lets him call the shots whenever it is possible. Dr. McCartney was so surprised that we lost our secondary insurance (provided by the state when JM was diagnosed). Although he is in remission, the treatments have caused problems that have to be fixed too... like hips and knees. Fortunatly, we work with a wonderful physical therapist who is teaching us how to do all his exercises at home once we lose coverage in Novemeber. It is not something I look forward to doing with John Michael... it is hard enough to parent a teenager, much less tortue them with PT..., but I feel so blessed to even be dealing with the late term effects. For those of you who have followed this site for his journey, you know there were nights we laid down not knowing if he would live out the week, so in what world do I get to complain about crumbling hips, knees and a child who's cholesterol is over 200 because of the very same steroids that saved his life? He's sure not complaining. He's living life, even though he's lost so much... so many. I too want to live life with my eyes firmly fixed on what matters... family, faith, and finding a CURE!
We are also facing some medical unknowns with Anna. We were told last year that the reason for her double vision was convergence insufficency. That led us to try glasses and then vision therapy to correct it. After all this and three different pediatric opthamalagists, we still have not seen an improvement. It does not interfere with her reading or school work, but because there has been no change, we have been referred to a neurologist, Dr. Pearlman. We hope our meeting with him next month will give us some answers. Our last doctor suggested an MRI, which nearly sent Anna over the edge. I know she is terrified after what she has seen her brother and others go through. Three years ago, this would be just a routine check, but now we all know too much... things no one should have to know. I believe in my heart that Anna is fine, but there are things that nag at my mind (my grandfather has brain tumors) and an MRI would sure put it at rest. Just pray that Dr. Pearlman makes the right call on what to do. I don't want to put her through an MRI just for my peace of mind, so I am leaving it to the experts.
2005 and 2006 were the years for battling for John Michael's physical life. 2007 has been the year for healing emotionally and spiritually (for the whole family). There is no way to describe what the battle for his life was like; other than it consumed every fiber of our family's being. We set everything else to the side to fight, so it has been quite a challenge to pick up where we left off because two years went by and nothing is the same... least of all us. Making big changes has been good for us. The kids both had fresh starts at new schools and a new church last year. While we miss our church family here in Rincon, it helped our spiritual life to drive into Savannah and find a church where we could slip in and be anonomous for a while. We felt so depleted and both kids had many questions about Who God was through their trials. This is so very personal, but our relationship with Christ is so essential to our very character that to not tell this part is to leave out an integral part of the journey that cancer has caused in all of our lives. Cancer is the one time in my life that I have stopped all else and held on to only the things that mattered most. I'm sorry to have to admit that it took almost losing my son to really see the value and simplicity of every day life. There is so very much in our life that we can not control, but I can choose to wake up every day with a heart of gratitute. I can choose to teach my kids that good character is not just "being nice", but doing what is right, kind, and caring. I want to teach my kids to forgive (as God so graciously offers forgiveness) and to ask forgiveness when they do wrong. To seek with diligence the very thing that God uniquely created them for... you know the thing that brings passion to our lives when we discover it. To love and serve those around them. To laugh lots and seek new experiences. To live with purpose and without fear. The journey we have taken the last three years is one of trial, but more about the discovery of hope, faith, happiness, and the pursuit of the things that really matter.
I hope you too will be inspired to do the most with what you've been given. I don't know where you are as you read this tonight... maybe you are in the heat of the battle for your own life, or worse, your child's.... If that is you, hold on tight. The way may seem so dark and lonely, but know there are others who have gone before you who are praying for you. We understand what you are going through. Feel free to contact me at anytime through my e-mail address at the bottom of the home page (put John Michael's name in the heading so it will get opened). I promise you, I'll respond and try to link you up with someone who has been where you are and can provide you with encouragement.
For now, we will continue to leave this site up for others on their journeys to read, but will only update when John Michael agrees to sharing details and pictures.
Many thanks to those who have spent their days praying for or caring for my family. We would not have made it through the same way without your prayers, kind acts, phone calls, and notes.
Love,
Kim
November Update:
Thanks for caring so much for our family. I am amazed at the number of personal e-mails we received after the last update. So many of you wanted to know how Anna's appointment went that we decided to post everything here.
Anna met with Dr. Pearlman last week. He can not find any reason for her "unique vision". He has scheduled an MRI for Anna for December 4th. Dr. Pearlman felt like that would be the only way to put everyone's mind at rest. We have tried everything else.... testing, vision exercises, glasses (even though her vision is 20/20). Since he is the 5th doctor we have consulted and it does not interfere with her ability to read or ride horses (you know the really important things in life for a 9 year old) we agreed that this would be the last attempt to solve the mystery. When she gets a clear scan next week, we will simply move on with life and only come back to the drawing board if it begins to interfere with the things she loves to do or if it begins to diminish her vision.
As soon as we get news of clear scans, I will post an update below this, so check back next week.
For those friends and family in the Savannah area who are interested, we invite you to come see Anna in Mission Possible, put on by SCC Kidz. She plays Rachael in a unique play where an enemy becomes an ally, a king becomes dethroned, and an ordinary night becomes the night that changed the world. Performance dates are Thursday, Nov. 29th at 7 p.m., Friday, Nov. 30th at 7 p.m., and Saturday, Dec. 1st at 10 a.m. Admission is free. All performances are at The LINK at Savannah Christian Church (55 Al Henderson Blvd.) *there is no parking available at the LINK, but parking will be available in the main church parking lot*
I'll update next week.
-Kim
*****December 5th*****
We were unable to go for the MRI yesterday. Blue Cross has not put their final approval on the procedure. Anna was quite upset upon finding out. She has been quite the trooper dealing with her fears and anxiety. She also is blessed to know two super kids who have had MRIs without sedation. Caleb and Skyler have both reassured her that it will be okay... Caleb even fell asleep during his! We are scheduled to try again on Thursday at 4 p.m. Please keep up the prayers. The waiting and indecision can begin to work on your nerves. Please pray that BC/BS will approve the MRI, that Anna will remain relaxed and cope well, and of course, for clear scans!
I'll update Thursday night.
Kim
****Thursday Night*******
Thank you for all your prayers. We have been so touched by all who contacted us and let us know they would be praying today... especially at 4. Anna did a wonderful job and has a very special pair of brand new pink shoes for her efforts... don't judge.... "rewards" go a long way towards making things better... and what girl doesn't need a new pair of shoes when she has a hard day? We won't know anything till tomorrow and maybe even Monday. I'll update after I talk to Dr. Pearlman.
Kim
******Normal Scans******
Hooray!!!!!!
We have all let out a collective sigh of relief. Thank you for all your prayers, phone calls, and e-mails. We are thrilled and feel very blessed. John Michael has some pictures he would like me to share with you from a very special experience we shared with Tom and Chris Glavine and several other amazing families. I'll post these new pics.
With Love and Thanks,
Kim
Friday, August 31, 2007 9:32 AM CDT
I know if any of you still check in, you will be shocked to see this quick update. Due to the overwhelming amount of sweet e-mails we have received over the last two months inquiring of John Michael, we will do at least one more posting. We should have it done in the next couple of weeks, with new pics posted as well. We still are aiming to shift the focus away from John Michael, but to direct people to this site to see what survivorship looks like in tems of the whole family, in multiple aspects of wellness. We are aiming to bring this hope to others who are still in the fight, while updating those who have been wonderful enough to follow our journey with your prayers and support.
Much Love,
The Osborne Family
Monday, March 26, 2007 7:12 PM CDT
Diagnosis Day 809
Transplant Day 674
Dear Family and Friends,
I know you have been wondering if we have fallen off the planet and forgotten to leave a forwarding address!
Actually, John Michael had a great week last week getting the news he could go back to school (3 weeks after surgery, 5 weeks earlier than anticipated)!
Before going back to school last Wednesday, we discussed some areas that he wants to change. He is ready to resume life without any mention of cancer. For now he needs to take off his transplant necklace, walk away from the Web site, and find out who he is and what his purpose is in life. He wants to become anonomous again.
While it will be hard for me to not share his CURE with you, I have realized that this is not about me. This is about his need to declare independence from cancer. I know many of you have followed this site from the beginning and have poured yourself into praying for John Michael's recovery. As his mom, I'll never be able to thank you enough for being a part of this journey, but it is also my responsibility to put his needs above the purpose of this Web site. Thank you all for the last two years. Thank you for all your prayers, postings, e-mails, and encouragement. Thank you for rallying, "Fight, John Michael, Fight" through PICU. Thank you for watching the CURE and the many miracles we have received.
Where do we go from here?
I don't know what direction John Michael will choose in life. Only he can decide that. As with all teens, he just needs to find his own place in this world.
Anna is glad that things are finally not all about John Michael. It is hard for her to always be asked, "How is your brother?" She confides that she knows it is because people care, but it makes her wonder if they care about her too? You cancer moms can attest to the difficulty of sibling jealousy. I'll never forget the day Anna said she wished she had cancer too. After, I picked my face up off the floor, I realized the angst of her statement was about attention and how that correlates to her perception of being loved.
This is the last official update on John Michael. We will leave the site open for some time; at least until we figure out how to print off the journal and guestbook (the thought of that simply overwhelms me). We also may leave it open for others who are new to this journey to read the journal... we are waiting to see how Reflections of Hope (partnership with Savannah Christian and Backus) starts up and if this Web site will be of any use to those we are helping.
I will continue to begin Reflections of Hope. This is about how to help others and what they are going through using our experience and compassion. I am ready to stop talking so much about "our" story and instead focus on helping others with their many stories of childhood cancer.
John Michael wishes for me to express his love to all of you who have been so faithful. If I could ask one more favor of you... If you feel led to do so, please leave one last posting to John Michael. He would like to read how you came to this site, your story, or what his journey has meant to you.
The words "thank you" seem inadaquate to sum up our appreciation, but maybe simplicity is best tonight.....thank you.
Love,
Kim
Friday, March 9, 2007 7:01 PM CST
Diagnosis Day 792
Transplant Day 657
Dear Family and Friends,
Thanks for being patient. What a week! Last summer's surgery was nothing like this one. Last July; he came out of surgery like a champ, but faced a LONG, difficult recovery. This time; post op was very hard, but he is already weeks ahead of last summer! We are about ten days post surgery and John Michael has already moved from a walker to crutches, discontinued all pain meds, been to physical therapy twice, and is ready to go back to The Link at Savannah Christian tomorrow night! He has worked very diligently with Mr. Zittrourer this week catching up in school. Thanks to all who have sent cards, e-mails, postings, and called to check on him.
We have decided to cancel our scheduled trip to Atlanta for next week. This should be our LAST trip to Egleston! We have postponed it for after Easter. John Michael felt he was up to the trip, but I made a judgement call today on traveling that far before the surgery site heals better (he would still have staples in his leg next week and the crutches do wear him out). I also will not miss Anna's time off from school next week by postponing the trip.
While John Michael is doing so well, the rest of his "circle" has been struggling. Grandma and Pops both came down with the worst stomach bug, within minutes of each other, last Friday while Anna and Michaela were spending the night with them. Needless to say; both girls came right back home. Then Bigdaddy's Grandma came down with it and earned herself a couple of nights in the hospital. Please pray that Bigdaddy and those around them do not pick it up. The worst part for us has been not being able to help out in an effort to keep JM protected. I think it is a miracle that Tim and I have not picked up the virus.
Next week, I am hoping to allow John Michael more freedom and stay home by himself, while I try to get back to my book club. I also hope to meet with Michele at Savannah Christian to discuss the final preparations for Reflections of Hope (the partnership we are trying to develop with Backus to help pediatric cancer families). I hope to be able to submit the proposal to Backus next week and get rolling real soon. As soon as I have final okays on the specifics, I'll detail it out for you. I am very excited to see this coming to fruition and so thrilled that Savannah Christian is so willing to be a part of this awesome ministry.
We are also working on putting together John Michael's summer schedule. He wants to go to Camp Sunshine (he's never been well enough to go in the past), Red Carpet Event (for his second year), ONE Purity Retreat in the Spring, and possibly join CAP by summer and go to their weekly meetings.
Please continue to pray for JM's recovery and his friends Wesley Parker and Taylor Burch. We are so grateful for your continued prayers. I stand in awe at the miracle of John Michael's Journey... not just the physical healing, but how God has provided for and carried us through the storm.
Please Keep Posting and Praying.
Love,
Kim
Friday, March 9, 2007 8:17 AM CST
Update coming later on today. Please check back. Lots of good news to share.
Kim
Friday, March 2, 2007 2:06 PM CST
Diagnosis Day 785
Transplant Day 650
Dear Family and Friends,
Sorry to take so long to give you the full update, but this initial recovery has not been as "easy" as last summer's surgery. John Michael was still running a low grade temp through the night, but broke it around 11 am. So far, so good this afternoon. We want to thank Nurse Amanda with Backus for the phone consult yesterday. She has been by our side from the beginning and was willing to talk me through some things yesterday even though she was home sick with the stomach bug. We (Dr. McCartney's office, Backus, and us) have all agreed to wait this out and see what develops. Hopefully, it is just minor post op experiences and possibly a minor virus. They did use cadaver bone to fill the hole they drilled in his hip, so as always we pray for no grafting issues.
Dr. McCartney feels that the initial outlook is very positive. We won't know for several months if there are clinical results proven by new bone growth on the x-rays. What I can tell you is that the decompression sucessfully took away the severe bone pain John Michael had before surgery! It amazes me that he can tell the difference in pain levels through the haze of post op pain, but he did last summer and he knew right after surgery Wednesday too! The actual incision is supposed to be a couple of inches smaller than last summer because John Michael is not as "thick" due to all the weight he has lost. He is also going to be allowed to put 25 pounds of weight on the right hip right away instead of waiting 6 weeks like he did last summer. This is due to the fact that both hips are in bad shape, so he doesn't want all his weight on the left hip.
Please Keep Praying for:
No infections
No fever
Speedy Recovery
Amazing healing
Good spirits
Thanks to all who came by and helped keep John Michael (and us) in good spirits before surgery. He really enjoyed visiting with Tom, Doug, and Randall.. of course, he was already "under the influence", but he wanted me to tell you that you are his "favorite pastors".... does anyone remember that hilarious story from Egleston?
Thanks to all who have called or left guestbook messages. It means so much. If you have called and gotten a busy signal for hours, please be patient, as I usually take the phone off the hook during the day while he (or I) am catching up on missed sleep.
I'll have more information for you soon.
Please Keep Posting and Praying.
Love,
Kim
Wednesday, February 28, 2007 6:53 PM CST
******Update at bottom********
We got home tonight a bit after 7 p.m. John Michael's pain is under control; however, his blood pressure is low and he's been throwing up since the recovery room. His pressure came up to the magic number (100/50) allowing us to come home, but it will probably be a long night. We are so grateful for the ability to come home and avoid a night inpatient.
Prayer Requests:
1) That we can keep him safe and comfortable tonight.
2) That the surgery was a success
I'll post more details tomorrow once my head clears and John Michael shows improvement.
Thanks for all your prayers!
Kim
Thursday Afternoon
Still too busy for a full update. John Michael stopped throwing up this morning, but a fever has popped up this afternoon. I know it sounds a lot like what Anna had, but I feel very strongly that this is a result of a tough day yesterday. He took a lot of pain meds...some new to JM and we are just praying that he will find comfort soon. We have a call in to Dr. McCartney's office just to make sure we are making all the right decisions about John Michael's care. Please continue to pray for his safety, comfort, and pain.
Kim
Tuesday, February 27, 2007 6:20 AM CST
Diagnosis Day 782
Transplant Day 647
Dear Family and Friends,
Anna's fever finally broke for good over the weekend; however, she was wiped out and not herself until yesterday. She woke up (after sleeping thirteen hours) back to her old self! She was so much better, I took her to school around noon. Anna was definitely tuckered out by bedtime, but awoke feeling great this morning. While she was sick, we heard from the school that she had passed her GT tests and was invited to join the program... she starts today and is so very excited. She will get to go to GT class once a week, but stay at her same school.
John Michael is definitely on for surgery tomorrow morning. (I'll post the time at the bottom of this update later on this afternoon when day surgery contacts us again with the final schedule.) He just came home yesterday and boy was it nice to all sit around the table together again! He is really struggling with the pain.
We ask that you pray specifically for:
1. The decompression to end the pain
2. The surgery to succesfully promote new bone growth
3. Infection free recovery
4. A quick recovery and even quicker return to school
5. The crutches to work for him, so he can stay out of the wheelchair.
John Michael and his homebound teacher, Grady, are working through Math and History together very well. John Michael received an F in Algebra at the midpoint of the 9 weeks, but has since scored a couple of As and a C on his tests.
Grandma, you'll be glad to know he is off restriction... not because of his surgery, but because he is working so hard and giving it his best. I know my Grandparents thought I was the meanest mom ever to put him on restriction "after all he's been through and is going through", but I feel firmly that God gave us the gift of John Michael and it is our responsibility to raise him into a responsible, productive man. I can't have a 40 year old living with us, pulling the " I had cancer card". I believe that we are not a product of our circumstances, but how we respond to them. I think John Michael is my hero, not just for surviving cancer, but choosing to want more from life now. I see him changing and discovering who he is right before my eyes and I thank God for the privilege of being his mom. The funny thing is, my Grandparents would have done the same thing when they were raising my mom, but their job is to now spoil my kids rotten! I love you Grandma and Bigdaddy. You have always been my example for loving God, each other, and the family beyond measure.
I want to take a moment to thank Amy Ambrose for bringing John Michael a delicious smoked Boston Butt while he was at Grandma and Pops' house. He loved it and it really brightened his day. Speaking of brightening his day, you must all know that my son's "love language" is food because the Vorel family showed up Sunday night with John Michael's favorite... a yoo hoo and a honeybun! You are all so sweet to love on our boy!
I also want to thank Kendra for sending me the scripture with our names in it. I knew that passage, but I needed to be reminded that God really doesn't want us to be afraid. I think there are over 300 instances where He tells us that in the Bible... I guess He knew that is a pitfall for a lot of us!
Thank you all for your continued prayers and postings. It means so much.
Love,
Kim
************************************ John Michael will report to MMC Day Surgery around 9 a.m. and is set for surgery around 11 a.m. I'll update either tomorrow night or Thursday and let you know how it went. Thanks for your prayers!
Friday, February 23, 2007 9:52 AM CST
***new update at bottom
Just a quick note to ask for prayer. Anna is still running a temperature. Yesterday, it was back up to 102.5, but this morning it was down to 101.4. We saw Dr. Decker yesterday morning and an antibiotic was started because it appears Anna has a sinus infection. She has not vomited since early Tuesday morning, but this high temp is so very unusual for Anna.
In all honesty, it is triggering irrational fears and feelings for both Tim and I. I can tell you that I know they are irrational, but they are hitting us both very strongly. I guess that neither Anna or John Michael can get sick again without me thinking things I can't stand to even type out.
Please pray for Tim and I to not be fearful, but to relax and trust God. Pray for Anna Banana to break this fever once and for all. Pray that John Michael's surgery will be rescheduled for this coming Wednesday and allow him relief from the pain. He is still at Grandma and Pops' house trying to avoid what his sister has and we miss him terribly.
I'll update when we have more news.
Please Keep Praying and Posting!
Love,
Kim
10:30 p.m. update:
Anna's temperature finally broke today around 1 p.m, so Tim and I went on a date we have had planned for the last month, but when we arrived home Anna's temperature was back up over 101. (Thanks Mom for giving us a much needed night out and staying with Anna Banana. Thanks Dad for continuing to hang out with JM and giving up Mom for the evening.)
Dr. Decker wants to give her the rest of the weekend to let the antibiotic work and for her to get lots of rest. If she still has a temperature on Monday, she will be returning to Dr. Decker's office and I will ask for blood cultures and full lab workups.
John Michael's surgery is rescheduled for this coming Wednesday, February 28th at MMC. Please pray he stays healthy enough to make it. He is in pain and is ready to get this surgery behind him.
He will remain at Grandma and Pops' house until Anna has remained fever-free for 24 hours. Thanks so much to Mom and Dad for always being willing to do whatever it takes.
Thanks Kendra for e-mailing this specific verse to me today. It is something I know, but needed to be reminded of.
For God hath not given us (Tim & Kim) the sprit of fear: but of power, and of love, and of sound mind. 2Timothy 1:7
Please Keep Praying.
Love,
Kim
Tuesday, February 20, 2007 2:41 PM CST
Diagnosis Day 775
Transplant Day 640
Dear Family and Friends,
One thing we have learned over the last two years is to be flexible because the unexpected is bound to be expected! Last night around 10 p.m., Anna woke up throwing up in her bed. The always helpful and faithful Pops' Grandma came to get John Michael and remove him from the "ickies". Tim and I were up with her for hours cleaning her, the room, and anything she had come into contact with. She was better by around 7 a.m., but then a 102.2 temperature hit around 11 a.m. Needless to say Dr. McCartney called off tomorrow's surgery because John Michael has been exposed. We wouldn't want to find out he catches "it" during surgery or in his recovery time when he is immobile. (Of course, we are praying he doesn't catch "it".) If he is still well by Friday, we will reschedule the core decompression for next Wednesday, 2/28/07. This sets John Michael back a week in returning to school. The other worry is that the pain has been ever increasing. Dr. McCartney has called in some Tylenol 3 for John Michael to help him avoid the morphine that he hates. John Michael really dislikes pain meds, but finally agreed to the T3. I am just praying it will offer him some relief till next week. While we are frustrated at the turn of events, we trust in God's plan and just pray for both kid's comfort for now.
I've got to run back to Anna right now, but I ask that you pray for healing for Anna Banana, protection for the rest of us to avoid whatever she has, John Michael's surgery to be promptly rescheduled, and relief for his pain.
We have so much to be thankful for, but right now at the top of my list is our wonderful homegroup from Savannah Christian who have provided chicken and dumplings for dinner and Caringbridge that offers a free resource to effectively communicate with all we are priveleged to have come check on John Michael. Thank you for always being our prayer warriors through the "big things" like PICU and the "bumps" like today.
Please Keep Praying and Posting!
Love,
Kim
Tuesday, February 13, 2007 6:46 AM CST
LOOK FOR PM UPDATE AT BOTTOM OF ENTRY... A LOT CAN CHANGE IN A FEW HOURS
Diagnosis Day 768
Transplant Day 633
Dear Family and Friends,
When I sit down to type, I hardly know what to say anymore. Living the CURE is not what I thought it would be. Our life is not back to "normal".... it never will be....we've seen and felt things that don't allow normal to return. In so many ways life is so much better now. We spend more time together, we hug a little harder, we laugh more, we eat ice cream for breakfast occassionally (just because we can)! We have explored our faith to a much deeper level. We now worship much more openly. The kids have returned to school and resumed extra activites. We are all able to go to church again. AND YET....life is not normal.
When I became a Christian at 25, I felt like I was seeing the world with a different set of eyes. The day before, I couldn't see things the way I saw them that night. It is hard to explain. But before I had faith in Christ, I was seeing the world through different eyes, then through faith, the blinders feel off my eyes, and my life has not been the same since. This is the only analogy I can come up with to draw a picture for our new normal. Life just doesn't look the same. It's different. In some ways its better, but your eyes are open to the suffering. Our walk with God is definitely what sustained us through this journey.
Now that we know what families are facing, we want to help lessen their load and hold their hand as they face similar trials. I've been praying for months for God to show me how to be most effective in this. Tomorrow, I meet with some leadership from Savannah Christian to discuss how we can partner with Backus Children's Hospital and help these families in our community. Please pray for this meeting time. There is a list of needs that one person can not effectively meet, but as a group we can work together and meet many needs. After we hammer out a starting point and a list of things we can do, I plan to make a similar proposal to Backus and hope that we can work through any road bumps to create a partnership that will benefit the families at Backus. (My dream is that it will grow to include adult oncology as well.)
John Michael is in a bit of a slump. His right hip continues to ache and the pain seems to be increasing. When we saw this with his left hip, he waited till he couldn't take the pain anymore and had the core decompression surgery. I know this is in his future, we have just been praying that it would be much farther off. He continues to swim twice a week and has been doing a bit of Tai Chi as well. It is hard to see him in pain and I know this affects so many areas of his life from mood to school work. We go back to Dr. McCartney (Orthopedic Doctor) the first week in March and will have more answers after this appointment.
Can it only be February? We are yearning for the long days of summer where the kids don't have homework and we can schedule doctor's appointments without any thought of catching up in school. John Michael can't wait for Camp Sunshine, sleeping in, the Red Carpet Event, staying up late, Lighthouse, and swimming anytime he wants! I am looking forward to weekly gatherings on the lawn as the guys play basketball and we gather on blankets talking and catching up. I can't wait to head to the beach and let all my thoughts go as I listen to children playing in the surf and sea gulls flying overhead. Well the kids get out in the middle of May, so we only have 3 more months to dream and long for those days.
Please continue to pray for Jenny, Tre', Anna, Tim, Janet, and Mark as we know they continue to miss Catie, Chloe, and Jack.
Please Keep Posting and Praying,
Kim
PM UPADTE
A few hours after I entered this update, I received a call from the school asking if John Michael could take something for pain. I agreed. An hour later, he called back, saying he couldn't take the pain anymore. He had thrown up because of the intensity and needed to come home. I quickly called Dr. McCartney's office. His wonderful nurse, Laura, called me right back and told us to come straight in for x-rays. Dr. McCartney did not see any noticable change in the x-rays from the ones he had taken in January, but the pain is undeniable and a signal that it is probably time to perform core decompression on his right hip. John Michael readily agreed and surgery is scheduled for next Wednesday morning at MMC. Another thing we love about Dr. McCartney is that he lets us leave after surgery without going inpatient. We have learned how to care for JM well enough and to manage his pain appropriately enough that we have earned this pass. I can not express how much that means to JM and us. Home is where we always long to get back to and we all sleep much easier here.
John Michael will be back on homebound for the next 8 weeks. I know he will miss the social aspect, but we are so grateful that we live in Effingham County and receive the best possible care from ECHS. His homebound teacher, Grady, is so good at teaching John Michael math and the rest he can pick up on himself. A huge thanks to Mrs. Zipperer at the high school for always arranging his homebound lessons.
As always, we ask for you to pray specifically for healing and protection from infection. We ask that the core decompression be as successful as it was on the left leg. Core Decompression does not always work. It is a 50/50 shot, but JM received clinical results and an immediate release from intense pain last year, so we pray for those same results. We are also praying for a shorter ecovery period that does not include a wheelchair. JM doesn't want to go back to it, so we will try crutches instead. He really needed the chair last time because he was so weak, still had a bad right hip, and 50 pounds heavier than now. He is in a lot better shape and hopes to not lose too much ground physically through the next 8 weeks. We apprecaite your support and prayers. It means so much to us to know that there are so many out there praying. I will update before the surgery.
Love,
Kim
Thursday, February 1, 2007 7:30 AM CST
Diagnosis Day 757
Transplant Day 622
Dear Family and Friends,
Sorry to wait so long between updates. I am sitting here so conflicted on what to express to you this morning. In the last two weeks, I've attended Catie's Celebration of Life service as well as a memorial service at the hospital for the little ones we've lost in the last year. As I look in the eyes of my friends Jenny, Tre', Janet, Mark, Anna, and Tim I realize that I have no words to say to ease the pain they feel in losing Catie, Jack, and Chloe. We are four couples who never would have met had it not been for the hell our children experienced here on earth. Our friendships are not ordinary, but forged by a bond marked with many wounds....and in the last year, all of them have received the wound that cuts the deepest of all...the end of the battle. I don't know what they are going through or how to help. Anna, Janet, and my dear, sweet Jenny, I am here for you any time and though I stumble with my words, I just want to be available for each of you in whatever you need.
John Michael and Anna are both handling their grief well. John Michael continues to impress us all with his work for the Leukemia and Lymphoma Soceity. He was asked to create a piece of art that expressed his emotions about the trial he's been through in any way he chose. The art work will be shipped up to D.C. for a display on Capitol Hill this March in an effort to increase awareness and funding from our legislators. He chose to put together multiple pictures taken over the last two years in the form of a 20 by 24 inch collage. His selections included several of his friends Catie and Jack, as well as his PICU pictures, and his dad running the half marathon for L and L. He aptly titled it "Hope Through the Storm". Unfortunately, I forgot to take a picture of the completed piece before we shipped it to headquarters in Atlanta, but our sweet friend and soceity advocate, Terri, is working on getting that so I can post it on this page. We hope it will be used as an effective tool in advocacy for the Soceity. While it is helpful for JM to do work to help others who are fighting cancer, he is also ready to pull back a bit from "hands on" work. The world of childhood cancer is one that he needs to let fade away for awhile as he throws himself into healing emotionally and spiritually. He is working through his grief, guilt, and anger with Dr. Pedigo while he begins to explore the outside world again. He is interested in joining the Civil Air Patrol (CAP) through a chapter at his school. They are willing to take him "as is" ,on the physical side, and will modify his assignments to fit his orthopedic doc's strict orders of no impact! (His latest x-rays showed the AVN to be in his knees, hips, and shoulders...not good news...) He is also swimming twice a week in the evenings, thanks to the Marriott (isn't it amazing how they keep entering our lives) Springhill Suites in Pooler. The amazing management (much like our friends in Atlanta at the Residence Inn) have allowed JM to come into their very clean, heated pool and spa for free to do his aqua therapy. In addition, he is up to 5 minutes a session on the elliptical trainer and can ride his bike again. He tried Pilates the other night and gave that a "not so much" rating... so I am off to the library today to try and checkout Tai Chi for him. Academically, all is well except algebra, which he is close to failing. The results from his neuropsych tests are almost complete. These results should help us with modifications at school to help him be successful. John Michael is also attending Savannah Christian on the weekends at the LINK and going to church with his friend Corey on Wednesday nights here in Rincon. In his spare time, he is reading, listening to music, and playing lots of games with us (and Grandma and Pops). Our latest favorite is Mexican Train, Apples to Apples... and our old favorite, Scrabble.
Anna has been sick this past week. She ran a fever over the weekend (with no other symptoms), then stayed home yesterday with a nasty cold. If she does not improve soon, we will have her meet our new family doc. Dr. Decker, is board certified in both peds and internal medicine, so we are switching all four of us into her Rincon practice. We have been searching for the right doc who could see all of us and know us as a family. After our initial consult, I knew right away that she was the right fit for our family.
Anna is staying very busy with school work and serving in church. At Savannah Christian she loves participating in the praise team for the kid's worship service. She is also learning how to operate the technical aspect of the service like power point, but is thinking of switching from tech to drama... believe me, this girl knows drama! At school, she has been testing for the gifted program. We are not sure we will accept the challenge or not, but didn't want to make a decision until the testing and interviews are complete. Anna has also started Tae Kwon Do. She really loves it and can't wait to get her uniform. In her spare time she is reading, writing songs and stories, and loves to take care of all her "babies". Her favorite right now is Amazing Amanda. I'm not sure how many of you are familiar with this talking doll, but I feel like I share my house with "Chucky"...remember that creepy movie about a doll from the 80's or 90's. She always "wakes up" around 9 am when I'm the only one home and it freaks me out every time to hear "Mommy, Amanda is awake now....Come play with me". I much prefer her other favorite, "Miss Moo Cow" that was sent last Christmas by Camp Jack.
As you can tell, things are very busy here. We preserve one night a week for nothing but family time and game night, but try to squeeze in extra family time throughout the week, including sitting down to dinner together every night. My free time is during the day. I submitted my proposal to Savannah Christian for the ministry partnership with Backus Children's Hospital. I meet with SC on 2-14 to go over it. I am hopeful that we will be able to offer patient services support to those who so desperately need it.
Thanks for your unwavering support and also to all who took the time to write their "Catie Story". If you haven't done so yet, feel free to do so now and post it in our guestbook. I won't copy them till next week's update. Pray for Jenny and Tre'. They have really run through the full spectrum of emotions from losing Catie one week to welcoming her little sister, Izzy, the next. I'll try to get new pics of JM and ANna up soon (and maybe Izzy too).
Please continue to pray and post.
Love,
Kim
Tuesday, January 30, 2007 2:57 PM CST
Sorry to wait so long between updates... we've not forgotten about you. I promise to pull it all together by Wednesday night/Thursday morning.
Till then,
Kim
Thanks to all of you who posted your "Catie" stories. I will print them off and give them to Jenny when the time is right. I know it will mean so much to her. She gave birth to a very adorable girl on Friday, January 26th. Her name is Isabella "IZZY" Claire Wilkens. Please continue to pray for Jenny, Tre', and the rest of their family.
Monday, January 22, 2007 6:12 AM CST
Diagnosis Day 747
Transplant Day 612
Dear Family and Friends,
I am here this morning preparing for Catie's Celebration of Life service. My mind has been on Jenny and Tre' continuously. Tears fleely flow as I sit here thinking of them facing today and tomorrow and the next without their sweet angel here beside them. I know Catie is in heaven, so the grief is not for her, but those she left behind who ache to hold her in their arms. I have asked you to share your own "Catie Stories" here in our guestbook and then I realized that I wanted to share my memories too and the story of how I met this incredible family.
Three and a half years ago, we lived in Savannah. One Sunday at church, we heard about a little girl whose family learned on her first birthday that she had cancer. They directed us to a Web site (it wasn't a Caringbridge site then). At home, I pulled up the site. I sat there in disbelief looking at pictures of this sweet baby after surgery. I prayed for her and for the family. I remember thinking..."God, I could NEVER handle anything like this happening to my children, please be with this Mamma and Daddy as they take care of their little girl."
Shortly after that, we moved out to Effingham (the same county as Jenny and Tre') and settled in to our new life out here. Almost a year to the day later, we learned that John Michael had AML. Those of you who follow his site know the biggest trial of our life started that day. He was admitted to the hospital the following day and was there for about a month and a half. Soon after, I started getting messages that somebody named Jenny Wilkens wanted to meet me. She came by the room and left a bag with Pops, left messages with mutual friends, and basically "hounded" me into meeting with her! I was on autopilot at that time, barely functioning between JM's diagnosis (and prognosis), the hospital, and running back home each day to be with Anna at night. I didn't think I needed to meet someone new... I didn't have time to get help or lean on someone I didn't know...then I met Jenny... and all that changed.
I remember feeling a kinship with her from our first meeting. She has such an easy smile, contagious laugh, thoughtful mind, and caring heart. She "introduced" us to many of you on Caringbridge. She has heard me say things out loud that no one else has, because she holds no judgement, and knows that often we just have to say things, get them out, process through them, and move on. Since we first met almost two years ago, we have shared highs, lows, meals, prayers, and many moments of laughter. For a while, it seemed Catie and John Michael shared highs and lows together. We seemed to get bad and good news within days of each other. We have cried, muddled through bad news (What does this mean? Which route should we take? Should we go elsewhere for treatment?), and rejoiced on the good days. We have prayed so hard for this baby that will be arriving soon. She prepared the BMT calenders along with Amy A. so both my kids would have a bit of joy each morning before and after the transplant. She rallied many of you through Caringbridge to visit our Web site through PICU in both Savannah and Atlanta and leave messages of "FIGHT JOHN MICHAEL, FIGHT!" One night, as we were leaving a ladies Christmas Tea in Savannah, I got a call that John Michael had been readmitted to Memorial. Not only did she run me to the hospital, she then took me to Kroger in the middle of the night to stock John Michael up with food, since he was still on a BMT diet and couldn't eat anything from the hospital. In short, Jenny has come alongside me and helped me navigate this path of childhood cancer. She knew how overwhelming this road was and wouldn't let me walk it alone. She has helped me to be a better mother and advocate. She introduced me to many of her wonderful Atlanta friends, Quite Heros Luncheon, The Lighthouse, and Hinson's. I can't say enough good things about someone who I am privileged to call a friend.
I was so prepared to help them walk down the road of stem cell transplant... it was a part of the journey I was familar with and ready to help them navigate. I don't know what to do now. I can't imagine the kind of grief Jenny is feeling. Jenny, dear friend, all I can do is say that I am here... today, tomorrow, and all the rest. I don't have the right words, but I'll sit and listen. I promise to just be there... any time day or night... I'll be there. I love you girl.
Love,
Kim
Saturday, January 20, 2007 6:29 AM CST
Diagnosis Day 745
Transplant Day 610
Dear Family and Friends,
There is so much that I wanted to share with you over the last couple of weeks as I was preparing for the next update... John Michael's latest hip/knee x-rays revealed new things, his new physical therapy program, Anna's new activity of TKD, new ministry proposal to Savannah Christian, etc.... but our "new normal" world hit the brick wall of the reality of the world of childhood cancer when we learned that our precious friend Catie has left her Mama's arms for the arms of Jesus.
The arrangements are posted on Catie's site along with their address. As you continue to pray for her family, drop by their site and leave a quick posted message. During difficult times the guestbook can be such a source of encouragement (even from strangers). I know Jenny and Tre' would appreciate it. I also invite you to continue sharing your "Catie Stories" in our guestbook. At the right time, I'll copy them and deliver it to Jenny. Speaking of delivering... they should be welcoming their new baby very soon. I have this picture in my head of Catie coming into to heaven, meeting her new brother or sister (Jenny and Tre' chose not to find out if it is a boy or girl), and saying to them, "Okay, we just have a few short days. I have a lot to tell you about Mamma and Daddy."
Thanks to so many of you who have helped make this loss easier on Anna and John Michael. John Michael went to school late, but he did make it. Thanks to Dr. P's office and Aunt Bonnie for being available to talk through the struggles of a survivor who's heart is ripped out with the death of those he loved who walked a similar path. "Survivor's Guilt" is real.... Thanks to Karen Durkin, principal at Blandford, who helped shield Anna from learning about Catie at school. (Jenny was a teacher in our system before Catie's diagnosis and their family is well known and loved in our community.) Thanks also to Shannon who was praying for our talk as Anna came home from school. Anna's first reaction was to ask how Jenny was, then she wanted to look at Catie's site and leave a message in the guestbook. Pops' Grandma and I then provided "retail therapy" (something we learned from Jenny and Catie). We all ended up having dinner out (thanks again to Grandma and Pops) at our favorite Mexican place, then came home. Anna had her best friend, Kaley, spend the night and JM retreated to Grandma and Pops' house.
John Michael, Tim, and I will attend the viewing (Sunday) and celebration of Catie's life (Monday). I know Jenny has a lot of "cancer mom" support in Atlanta where the majority of Catie's treatment was done. If any of you are reading this site and need help with lodging, directions, or arrangements, please e-mail me with "Catie" in the heading.
John Michael Prayer Warriors, PRAY, PRAY, PRAY.... Catie's family really needs our love and prayers as they grieve.
Kim
Thursday, January 18, 2007 9:21 PM CST
We are devasted tonight to learn that we are losing our Catie Bug. She has fought so very hard, for so very long. Please pray for Jenny, Tre', and the rest of the family. In addition to their grief, they are expecting to deliver their second child next week.
John Michael is broken. Anna does not know yet. We are hoping to keep it from her until after school tomorrow. (She is in the middle of testing for the GT program here.) Our town is so small and close knit and the Wilkens so very loved that I'm not sure if this is even possible to keep away from her for a day, but losing Catie is going to hit her so hard. She and John Michael both love Catie so much. Of course Catie completely ignored John Michael if Anna was around, but she always kept a sharp eye on me taking care of JM. I'll never forget one of our trips home from Atlanta when Catie saw me taking John Michael's blood sugar level, then giving him an insulin shot, she started shooting out orders like a nurse concerning bandaids and his comfort level. She was always so sympathetic to other children with bald heads.
Tre' and Jenny have openly shared her with all of us either in person or via Caringbridge. If you have a "Catie Story", feel free to post it in our guestbook. At the right time I'll copy it and make sure Jenny and Tre' get it. Even if you didn't know her in person feel free to share.
Love,
Kim
Tuesday, January 16, 2007 11:02 AM CST
I hope to have a new entry soon, but for now PLEASE pray for Catie. Her link is at the bottom of the homepage. Click on it to go to her site and encourage her family. They are having such a tough time.
Love,
Kim
Thursday, January 4, 2007 6:12 PM CST
Diagnosis Day 729
Transplant Day 594
Dear Family and Friends,
We are near another milestone marker. John Michael was diagnosed with AML two years ago tomorrow. If you have been with us from the beginning, you know we did things a bit differently that day and continue to each January 5th. What is that? We celebrate. Do we celebrate cancer? Absolutely not, but we do celebrate our love that we all share together and the provision God has given us through the hell on earth John Michael went through. We celebrate the fact that we didn't walk through this alone.
Two years ago, we first walked into Backus Children's Hospital and received the news that changed all our lives forever. Backus' staff poured out love and support that afternoon and we began a relationship with them that has become as close as family. Amanda drew JM's blood and began to "prep" him for the news he was about to hear in only the way Amanda can... with shining eyes full of empathy and support. Dr. Vats drew Tim and I into his office with Pam and Donna and in the most gentle, optimistic manner told us news that knocked the air out of the room. Donna has been by my side till this day helping with social issues like school and filing for Medicaid. She always listens to ideas the parents have to make Backus better for our kids and helps me meet families that are newly diagnosed in an effort to support the family. Dr. Vats is now head of Anderson Cancer Institute at Memorial, but will always be our rock through this storm. He has treated JM like a son and always has a hug for Tim and I. Pam, well Pam is my biggest supporter. She and Susan Lively have meant the world to me and encouraged me through some pretty rough days. They helped me be a better caregiver to John Michael. John Michael was diagnosed a few days before I was supposed to report back to graduate school. I quit my job, but was preparing to return to school when Pam helped me to see how much John Michael was going to need me. I listened to her advice and dropped my classes.... John Michael didn't leave the hospital for about 45 days after his first round of chemo. He didn't just need me, he needed all of us, but there was no way I could have survived that semester of school. Pam saved us a lot of tuition money and stress. Of course, there have been so many others who have become our Backus family. We are grateful for all our doctors, child life workers, social workers, patient managers, and nurses on the third floor and at the clinic. Each of you have played such a vital role in John Michael's healing and we are so thankful you give of yourselves with these children every day. We know that it is not easy working in pediatric oncology. You lose way too many and have to watch children suffer daily, but many of you find a way to bring light to this dark world and we are thankful to have your hand along the journey.
We also celebrate having the social network we do... family, Freightliner, friends, church, Efingham School System, CaringBridge, Lighthouse, and the best neighbors. I don't know where we would be without you. Most of all we celebrate our relationship with Jesus. Without God's hand of provision, I would have lost this battle mentally, a long time ago. Watching your child suffer so deeply and seemingly unendingly and caring for them is exhausing to your body, spirit, emotions, and mind. John Michael will tell you that his relationship with Christ became much more personal this last two years. He had to really get to terms with God with all of his anger, hurt, frustration, and total utter dependence.
This is an emotional day for us because there have been so many hills and valleys through John Michael's journey. There were days we didn't think he would make it to his 14th birthday or the next Christmas. Now here we are with a son who is 15, cancer free, and healing more every day. Is he scarred? Beyond words. Literally his body is a scarred wreck two years later, but he is alive and doing better than we thought possible this time last year!!! Do we live in fear of the cancer coming back? No Way! Fear is gripping and controlling and life is way too short to be afraid. We are aware that we did things to his body in order to save him that will have long term repercussions, but that is what survivor clinic is for and we are so thankful to live under that classification... "SURVIVOR" has a great sound to it. Are his hips better? Nope, but as John Michael will tell you, he wasn't much of a runner before this and he is just so grateful to be off steroids now.
We plan on packing the kids into the car after school tomorrow night and hitting Chili's in Savannah for a great night out to dinner and celebrating. I hope I can get through dinner without crying and totally embarrassing my kids out in public, but I feel inside like my heart will burst out of my chest with happiness.
Days are becoming more and more "normal". The first year and half completely revolved around John Michael and healing. Every day was focused on just that. All of us put everything else to the side to make that happen, then we tried to step back into "real life"! What a shock the last 6 months have been. John Michael finally returned to school, we joined Savannah Christian, Anna started a new school, Tim has been able to work daily again, much fewer trips to Atlanta and Savannah, but we were still trying to live "life" around our "cancer world". Now we want to live our old life again, but with a new perspective. We are completely ready to go back, but we can't walk with our feet firmly planted in both worlds. With the new year, we are choosing "normal". John Michael is in school full time, spending his free time with his friend Corey, and enjoying Savannah Christian and his PS3. Anna loves time with family, friends, school, serving at church on Saturday nights, and is looking forward to starting karate next week. Tim is working hard for Freightliner and enjoying nightly walks with me, the kids, and Petey Girl. I have chosen to not return to grad school or work. The last two years have changed me in ways I can never explain. I only want to make the most of the time I have with my family. I love staying home and always being here for Tim and the kids. I also feel like I can't walk away from what I now know exists at Backus. I am submitting a new ministry idea to Savannah Christian. Please pray for discerment and wisdom. I don't want to overlap any services that are being provided, I just want to help those on the third floor and clinic in any way they need it. I will update you as it develops, but please pray for our family. As I said earlier, you can't walk firmly in both worlds. We need to remove ourselves in certain ways, but stay close enough to help out others. I guess we are just ready to take the spotlight off ourselves and help others who are where we were... does that make sense??? I have really been ready to let the Web site go. I am amazed at your love and loyalty, but I felt like we were wearing out our welcome. The last week has shown me through some personal conversations and e-mails though that we need to keep it for a while longer. Without going into details, we are able to help others through this site, so it will continue as long as there is that purpose.
I'm sorry this entry has grown so long... for those of you still awake at this point I am thankful for all your prayers and postings. Thank you for riding through the storm with us. I hope you too will celebrate tomorrow. Celebrate life, your loved ones, and our amazing God!
Love,
Kim
| Donate | How To Help | Partnerships | Contact Us | Help | Terms of Use | Privacy Policy | |
|
Copyright © 1997 - 2004 CaringBridge, a nonprofit organization, All rights reserved. |