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Wednesday, August 18, 2010 9:01 PM CDT
Dear Jaret,
Another year has gone by since we lost you but not a day goes by (or an hour or a minute) that we are not thinking about you and missing you. I try not to think about what you would be doing now or what you would be like because it's too difficult. Instead I try to focus on the happy memories that we had with you. I know you are keeping an eye on us down here. Jacob misses you so much and he is so proud to have you as his little brother. Jackson is growing up to be such an adorable little boy (he looks a lot like you!) I know you would have had so much fun playing with him and teaching him all about Thomas the Tank Engine! We talk about you with him and he knows you are his big brother and you are in the clouds. Today, we went to the store and he wanted to buy this Thomas train set for you -- so sweet!
Jordan and Jamie miss you so much too! They like to make special little gifts for you at PawPaw and Gummy's house. Jordan even wrote a poem about you which was so amazing. Jamie talks about you all of the time and even likes to blame you for her little oopsies :)
I get to see some of your friends at school or I get emails from them. They still remember you and like to talk about you. I love to hear from them! That shows me how special you really are! I told Darren the story about when I needed to shave your head and you didn't want me to. The only reason you let me was because I said your hair would look like Darren's! That made him smile so I was happy to share it.
I want you to know how much we all love you. You have changed all of us for the better. My life especially will forever be linked to you. I'm trying very hard to make you proud of me. Hopefully, this time next year I will be getting my own classroom ready to teach awesome kids like you! What I wouldn't do for an encouraging hug from you right now or a nighttime snuggle....
^j^ Sending lots of hugs and kisses to my little man in heaven,
Mom
Tuesday, August 18, 2009 6:56 AM CDT
Jaret left us three years ago today and I miss him more than ever. It almost seems like a dream or a different life - life before Jaret and life after Jaret. I think about him all the time and we talk about him because we have to make sure Jackson knows what an awesome brother Jaret is. I realize how amazing it is to be a child and not understand what death is because Jackson does not understand but he accepts that Jaret is his brother and he is in the clouds. We have his pictures around the house, his toys, his room is still intact and Jackson has never asked me why Jaret is not here. But I know someday he will ask and he will understand. But not today. Today Jaret is up in the clouds playing with his trains and video games and looking down at us. It's nice to think like a child for a while and forget the horrible part of losing Jaret.
Even though he is gone, Jaret is the glue that holds us together. He is our inspiration to reach our goals or just get through the day. He keeps us grounded and sane. We love him more than ever - our child, our brother, our grandson, our nephew, our cousin... our best friend.
Sweet dreams, little man --
Tina
Thursday, July 30, 2009 9:42 PM CDT
Hey Sweet Jaret,
Wow! Today is your 10th birthday! It seems impossible that you've been gone just 3 years. It feels like a lifetime even though you are still a part of our lives everyday. Your dad, Jacob and I talk about you all of the time and make sure Jackson knows all about his big brother. Just yesterday, we were out in the rain and Jackson said matter-of-factly "I think that Jaret's making it rain." Last night, he stood on the couch and looked at your picture on the wall and said "Jaret, I love you!" It was the sweetest thing! Today, Jackson and I went out to your garden to wish you Happy Birthday and Jacob, Jordan, Jamie and Jackson blew out a candle for you. You got birthday cards and some new balloons and we'll be sending some green balloons your way this weekend.
We miss you so much and hope you are making friends where you are now. I know that you welcomed Eden with open arms in December. I remember at your funeral she told me you were whole and well and could hear again. She was always so good with you when other kids at the hospital didn't bother to try to play with you. I think you are up there teaching her some new signs and you are playing together. I am trying to improve my sign language skills myself so when we meet again we can have the best conversation ever!
Your big brother Jacob will be a teenager next year - Lord, help us! He is quite the ladies man :-) Jackson is 3 1/2 with the biggest imagination and we can see so mucht of you in him. He will look at pictures of you when you were the same age and he swears they are pictures of him. (I will put a picture of him on the photo page soon)
I have been working really hard to make you proud of me. You are the best inspiration! I have a few more classes left to finish and then I will have my teaching license. I got the chance to observe in your old classroom last fall and hopefully, I will have the opportunity to work there someday. Today, on your birthday, I went to a deaf education lecture at school and I saw some familiar faces. Caroline's mom told me she still talks about you (and Jackson) and she remembered today was your birthday. I know the effect you have had on our lives but to remember that you touched so many others is amazing - just like you!
Even though you aren't here physically with us, you are still the center of our lives. I talk about you all the time because I want everyone to know how proud I am to be your mom. Your garden at grandma and grandpa's is beautiful. Your tree is getting big, the flowers are filling in and the lights and decorations make it the perfect spot to think about you and talk to you.
I love you and miss you more today than ever. I treasure all of the time we spent together even though it will never be enough.
Sweet Dreams, Little Man!
Happy 10th Birthday!
Love,
Mom
Wednesday, July 30, 2008 0:34 AM CDT
I'm sure most everyone had given up on me ever updating again. But, I could not let Jaret's birthday go by without acknowledging this important day. Not a moment goes by where I am not thinking about Jaret in some way. I try not to think about the really bad days in the end but instead focus in on when he was so happy.
Our family has been really busy this past year. Jacob is 11 now and will be starting the sixth grade - which I can't believe! He is getting so tall and handsome but don't tell him I said that. Jacob loves being a big brother to Jackson who is 2 1/2 but looks and talks like he's five. Jackson is the little brother who wants to do everything his big brother does - fishing, baseball, hockey, you name it! Just like Jaret loved trains, Jackson loves airplanes. He knows most of the names of the military planes. Guy took the boys went to the airshow two weeks ago and Jackson is still talking about it! I can see it when he is in school and his teacher says this is an airplane and Jackson will say "no, that's an F-14!"
Guy and I have been busy as well. Guy takes the boys on fun excursions on the weekends or to movies so I can study. I started back at Ohio State last fall to start earning my Master's degree in education. I want to teach deaf/hearing impaired children like Jaret. He had such an amazing experience at school and it completely inspired me to want to be there working with these awesome kids. I volunteered the second half of last year at his old school and got to see many of his buddies. They still talk about Jaret a lot and it always makes me smile.
I wanted to mention one other piece of exciting news. While Jaret was sick, we had a lot of help from the Westerville Police Department (Guy's employer) and their support group - HUGGS. They provided us with financial help, emotional support, food (lots and lots of food) and organized many of the important details at the funeral. They did so much and only wanted to do more! HUGGS recently asked us if they could name their scholarship in honor of Jaret. Of course, I said "YES" after I choked back the tears. So, the Jaret Cerino Memorial Scholarship is official and will give one or two awards per year (I think that's the plan). They are having a golf outing/fundraiser on August 29th. If anyone would like to donate, you can contact me or Guy and we will pass it along or Pharol Kaufman at the Westerville Police Department.
I really have to get back to my studying. I know there are others who still think about Jaret often and are inspired by his life. I am so proud to be his mom. Yesterday, I asked Jackson who's birthday was coming up and he finally guessed "Jaret". I asked him where Jaret was and he first said he didn't know and then he said "in the clouds." I imagine he thinks Jaret is just sitting up there watching us all which is a pretty cool way to think about it.
Happy Birthday, Little Man!! We love you and miss you more every day, Jaret!!!!
***How cool was it that when I picked up the Columbus Dispatch today, because I put in an In Memorium notice, there was Jaret's clinic buddy, Eden Adams, on the front page standing next to President Bush as he signed the Caroline Pryce Walker Conquer Childhood Cancer Act into law! ***
Tina
Saturday, August 18, 2007 10:24 PM CDT
To my sweet little angel, Jaret ~
We lost you one year ago today and I can honestly say that not a moment goes by that I am not thinking about you. I miss you more today than ever. Your dad and brothers miss you too. We talk about you all of the time to Jackson so he will know what a great big brother you are. I remember how excited you were when we found out at the ultrasound that you were going to have a little brother. I was the only one who wanted a girl, but now I know SOME things happen for a reason. I can see you sometimes when I look at him or hear him laugh and for a split second I forget. I know he would be following you around like a puppy just like you followed Jacob around. You could sit next to Jacob for hours just watching him play a video game. When you and I talked about Jackson before he was born, I will never forget you asking me if he would be coming out through my belly button!!! I had to explain to you exactly HOW the baby would be coming out and then you proceeded to tell your whole class! Yikes!
I have been without you for 365 days and what I want more than anything is to spend just one more with you. I miss your goofiness and how you would do anything to get a laugh and I even miss your stubbornness. I will always admire the way you didn't get embarrassed not caring what anyone thought of you. What I miss the most is your smiling, shining face. You also gave the best hugs and kisses! I cherish all of the time we spent together whether it was in the hospital, at school, the clinic or hanging out in my bed watching cartoons. There are so many special memories I have when you made me feel like the most important person in the world. Every night you would snuggle up to me and pull my arm around you when you were trying to sleep and whenever you woke up from anesthesia, your first sign would be "mom." The memory that sticks out most is the time when I was late for one of your soccer games. By the time I got there you were already in the game and you didn't see me arrive. One of your teammates kicked the ball (and you weren't paying attention) and it hit you in the face. You were so brave and kept playing not knowing I was there. When you came near me I saw your eyes brimming with tears but you were still playing until you saw me and then you ran right off the field, buried your head in my chest and cried your eyes out! That was one of those special "mom" moments that reminded me what we meant to each other. I have so many more wonderful memories of you and these help get me through the toughest days. I run them over and over again in my head when I am missing you the most.
You, Jacob, Jackson and your dad will always be the most important parts of my life. I promise you that I will live each day with you in my heart and I will make you proud of me. I love you and miss you more than I can possibly say.
Sweet Dreams, Little man.
Love, Mom
Monday, July 30, 2007 10:01 PM CDT
I'm sure many of you gave up on me ever updating again but - surprise! Today is Jaret's birthday and I couldn't let the day go by without writing something. He would have been (and should have been) eight today. We had a nice little party for him at my parent's house out in Jaret's garden. I made a 4 foot tall birthday card and we sang happy birthday and let off green balloons with messages written to him. It was a nice way to spend the day.
It's so hard to believe he's been gone almost a year. It seems much longer sometimes but I can remember every detail like it was yesterday. Last year his birthday was celebrated in the hospital and though we didn't know it would be his last, he definitely wasn't feeling well but he did manage to open every present. I remember worrying because his O2 sats kept dropping and they kept increasing his oxygen. A few hours after the party he was back down in PICU and two days later he was back on a respirator for the last time. I don't let myself think about that time too often because it still makes me physically ill and the worry and stress come back like it was yesterday. I try to focus on the happy times and how much he enjoyed every moment he could. Maybe this is a bit of denial or just not dealing with his death but its how I manage.
I have the boys' pictures all over the house and I have added a few to the website. These pictures are my biggest treasures. On the photo page I also added a picture of the portrait my mom and dad got for my birthday this year. My neighbor did this wonderful pastel of Jacob and Jaret when they were 4 and 2 years old. One of the other things I'm getting done is a T-shirt quilt with a lot of Jaret's old shirts. One of Jaret's classmate's mom, Paige, generously offered this through a local organization where she volunteers. Its called Deaf Initiatives and the employees who make the quilts are deaf so this makes it even more special. I will definitely put a picture up when I get it.
I can't believe the summer is almost over. Jacob, who turned 10 in May, will be going to a new school this year. I think he's excited about it. He's had a nice summer. He's been doing a lot of fishing which he loves. Last winter he also started playing hockey. We took the summer off from this but I think he will start up again in the fall. He's getting at the age when he can go and hang out with his dad and do guy stuff. They went to an air show and a NASCAR race just this weekend and last weekend it was a demolition derby! He's also getting to the age when girls no longer have cooties. He would be so embarrassed if he knew I wrote that!
Jackson and I get a lot of bonding time while the big boys are off playing which is just fine with me (although he loves spending time with dad too). He is getting so big. He is no longer walking - he's running and skipping and climbing everywhere! He's also talking up a storm and signing a few words as well. I know Jaret would have loved to hear Jackson talking and to sign with him. They would probably be signing so fast that none of us would be able to keep up!
As for Guy and I, we are doing alright. We miss Jaret so much and are committed to keeping his memory alive for Jacob and Jackson. As I mentioned I can't believe almost a year has gone by. I still have a few things on my to-do list. I haven't done much to Jaret's room other than go in there to look for something or to spend a few moments feeling closer to him. We still want to keep it his room but it is filled with clutter and we need to organize it better. One of my other big projects will be to go through and organize all of my pictures. I have developed pictures everywhere and I have about 10 CDs with digital pictures. I want to get them organized on a few CDs and make copies so I know they are safe. I also have about a dozen 8mm camcorder tapes that I want to get on DVDs. I guess I need to get a move on!
I've had a bit of a hard time deciding on my life's path since Jaret's death. Jaret's treatment was my number one priority for so long that everything else took a backseat. Now, I just feel empty. My life is forever changed and I need to have something good come out of all of this. I have started giving blood regularly which I promised myself I would do. My sisters all give as well so I would encourage anyone who isn't a chicken like my husband to do the same. It's quick and easy and fairly painless. My biggest news is that I am trying to go back to college! I have applied for graduate school at Ohio State and now I'm just waiting to hear if I have been accepted. I want to teach kids with hearing impairments. I'm so excited about this because I know firsthand what these teachers can mean to these kids' lives. Jaret had a wonderful three years in the C.H.I.P. program. I'm so excited and little nervous about this endeavor. Part of me felt that I was too old to do this but then my sister told me I was too young not to do what I want. She's smarter than me so I took her advise.
One little progress note for me: I had to make a trip back to Children's Hospital last weekend. I have been dreading it but knew that with two boys in the house that something was bound to happen sooner or later. Well Jacob managed to get a huge splinter in his big toe on Sunday night so of course the only place open was the ER. It wasn't too bad at all and Jacob managed pretty well. He had to get a shot in his toe to numb it before they cut the skin to get the splinter. He also had to get a tetanus shot. He was really funny because he has no pain tolerance at all and I was doing my best to sympathize and help him (he gets a bit dramatic). He was so proud of his hospital ID band that he wore it for three days! I think it made him feel a little closer to Jaret.
I think I better stop for now. I will definitely not wait seven months between updates. I hope you all enjoy the new photos. Thanks for checking in on us!
Tina
Sunday, December 31, 2006 10:38 PM CST
** New Photos added 1/3/07 **
Before I start on my long overdue update I have to give a huge THANK YOU to Colleen who redesigned the website to better honor Jaret. He would definitely approve! Colleen has worked on many kids' webpages and she more than exceeded any expectations I had. Colleen lives in Australia and is mom to Kaitlin who is also battling neuroblastoma. I will add her link at the bottom of the page. Thank you again Colleen!
Happy Holidays everyone!
I am sure that many of you had given up on me ever updating again, but maybe there are still a few of you out there who are checking in on us. I really never planned on so much time going by but I always manage to find an excuse to do it tomorrow. I am on the one day at a time plan still. Many milestones have passed by recently. Jaret was diagnosed five years ago on December 27 and we discovered his relapse at this time last year. We hit the 100,000 visitor mark on this website. But the biggest is that its been four months since Jaret left us. It feels more like four years. We miss him more now than ever and I feel like I'm losing him more everyday. I remember everything about him but it feels like it is all from another lifetime. Its amazing to me the things that I miss most. I miss the noise. Whether it was laughing or crying or fighting, he and Jacob were always making noise. They were best friends but also brothers who fought over everything. It is way too quiet now. Jaret was a very stubborn little man which served him well fighting cancer but could drive me crazy. I knew him so well because I constantly had to think a few steps ahead of him to avoid a meltdown over the most minor thing. I had to know what toys and games he would want to play with at the clinic, what snack he wanted from the store, and I still catch myself doing it. My life revolved around him and his treatment and I was closer to him than anyone else because of it. Now I have to surround myself with pictures and mementos so I can feel closer to him. Though I don't miss the constant worry that comes with fighting neuroblastoma, I would give anything to go back to that life if it meant that I could have Jaret back. I know that will never happen so all I can hope for now is that I might get to see him in my dreams, but so far the only dream I had was with Jaret back in the hospital hooked up to machines and the doctors telling us again that there was nothing more they could do to help him and how do we want him to die. If only that was just a nightmare and not one of the worst moments of my life. I try not to think about those last weeks in the hospital but sometimes I can't help it. Feelings of guilt and what ifs always manage to creep in but I really can't dwell on any of that for too long or I would truly go crazy.
Even though it was our first without Jaret, Jacob and Jackson did have a nice Christmas. Jacob is really getting onto hockey - watching it and learning to play it. Santa brought lots of new hockey gear for him. He has been practicing ice skating and will start hockey lessons in a few weeks. He and Guy spent New Years Eve at the Columbus Blue Jackets hockey game. They are really becoming very close in the past few months. Jacob is getting older and can enjoy the same things that Guy does. I'm a little concerned about Guy though trying to relive his youth - he's going to hurt himself! Jackson is getting bigger by the minute. He turned one in November and started walking soon after. He is so adorable. He looks so much like Jacob and Jaret at the same age. He is of course too young to know what's going on and that has probably been my saving grace. I can't focus too much on my own grief when there are diapers to change and a hungry little boy to feed.
I managed to get one weekend away from reality in November. My sister Tara and I went to Chicago to visit our other two sisters. It was a really nice girls weekend. We went to the Ohio State-Northwestern football game (Go Bucks!) and then we went downtown to see the Broadway show, Wicked. It was a nice weekend but I felt a little guilty leaving the kids here. They on the other hand really didn't seem to mind me being gone.
We have all tried to do special things to remember Jaret. I told my parents that I wanted to plant a tree in their yard in Jaret's memory. We decided to make it a whole garden where we could go to talk to him or whatever. My mom and dad have taken it to a new level. My dad researched trees to pick the right type - he went with an Oak tree. Then my mom said he had to find a 7 year old tree (same as Jaret). I will add a picture of the garden in the photo album once I get it downloaded. We scattered some of his ashes around the tree and put some plants around. We've added a nice plaque declaring it "Jaret's Garden", a Thomas train and some other tacky garden knick knacks (just kidding mom!) We may have to expand the garden as we find more items to add. Jaret would love every bit of it. He would especially love the holiday decorations. We carved pumpkins for him for Halloween and now he has a Christmas tree made out of lights, a blow up Santa, North Pole sign and a light up train. I will have to add a picture to give it justice.
One of the other things I decided to do a few months ago was to have a portrait done of Jaret. I discovered by accident that one of our very nice neighbors, Sandy Reddig, was an artist. I talked to her about doing this portrait and she was excited to do it. This was going to be a Christmas present for my parents. I couldn't have been happier with the final product. I put a picture of it in the photo album. I think she did a great job but she was more modest. She said that Jaret inspired her and practically painted himself.
Its been hard looking forward to the new year. I know that I have experienced the most difficult year imaginable and there will always be a huge hole in my life. Time will never take that emptiness away. I hope that Jacob will have great memories of his brother to share with Jackson. Jacob does talk about Jaret some. I wish he would talk about him more but I can't force it.
One of my first goals for the new year is to find a job. Jaret was my job the past few years and it was the only time in my life there was no question that was where I was supposed to be. Now I have to find something else. I hope to find something that will help me remember him and honor him. One life goal I have already accomplished is that I started donating blood. I've been wanting to for years and I just never got around to it but I am giving for the second time this week. I saw firsthand how important blood donation is and I know I could never repay all that Jaret received but I will give as often as I can. I know my sisters have also been giving regularly and I encourage all of you to do the same if you can.
I'll have to end this soon. I promise that I will update again sooner that this. Please keep all of the other kids fighting neuroblastoma in your thoughts. It breaks my heart to see these kids fighting for their lives basically becoming guinea pigs desperate to find the next breakthrough treatment. Jaret's buddies, Eden and Codey, are still fighting strong. They are both doing pretty well on two different treatments. I got a wonderful surprise a few weeks ago when Eden called me. She was calling to thank me but she will never know how much it meant to me to talk to her. Please send good thoughts to both Eden and Codey.
Its late, so I will end this now. I actually started this entry in 2006 and now we are an hour into 2007. I wish all of you a happy and healthy new year! As always, thanks for keeping us in your thoughts.
Tina
Wednesday, September 6, 2006 10:34 PM CDT
* The picture above is of the balloon release that we did after Jaret's funeral*
I have been wanting to update for a week or so but putting things down in writing seem to make things more final and more real. Today I emailed to another Angel Mom (which is so hard to accept as my new role in the cancer world) - anyway, I told her I felt that I was living someone else's life. She assured me this was normal and said it best when she said it just feels surreal. I have been trying to do everything I can to put reminders of Jaret around me. I put up new pictures, changed my screen saver to a pictures of the kids, got a new license plate with Jaret's name... I'm not sure why because I know I could never forget anything about Jaret. I think that I just need to hang on to every single piece of him. Thanks to all of you who sent cards and letters with special memories of Jaret. Its wonderful to see him through other people's eyes.
I want to add a note to please keep Jaret's fellow neuroblastoma fighters in your thoughts. The links for Eden and Christi are below under links. Christi is having a really hard time right now as her disease is progressing rapidly and her pain is excruciating. You can click on the link and then click on Blog to get the lastest updates. My hope for the entire Thomas family is that Christi's pain can get under control soon. She has been fighting for four years straight! This is just another example of how horrible and relentless this disease is! Eden is Jaret's clinic buddy and she is recovering from her first MIBG treatment and starting first grade! She is such a cutie and my very favorite visitor at Jaret's calling hours. She gave me a beautiful bracelet and stepping stone she made herself! Thanks Eden!
I can see this is going to be a long update so I apologize now. We are really missing Jaret in the house. Nothing is or will ever be the same. I know that there will always have a huge hole in our lives. He has been gone almost three weeks but it seems like months since I have seen his smiling face or received one of his awesome hugs. I think about him all of the time but then I will see something that makes me miss him even more. The new toys at McDonalds are Mario Brothers/Nintendo and I know he would have had me going there twice a day until he had all of the toys. He should have started second grade last week. Instead I went to his school to put up some of his pictures and toys in a display case. His teacher showed me they were thinking of him too. She had all of her students' names on bananas hanging from a paper tree and Jaret's name was on a star looking down on the tree - how nice was that!
Thanks for all of the concern expressed for Jacob. He is doing really well. He started school the day after the funeral and I think that has been good for him. His cousin Jordan started kindergarten there so he has her to look out for. How many fourth graders would sit with their five year old girl cousin on the bus?! He still talks about Jaret a lot but has accepted that he is gone. He has grown up so much the past few months. He was actually comforting us when we told him. A cute story - a few days after we picked up Jaret's urn we had a tornado warning in the area. Jacob's first thought was to get Jaret's urn with us safely to the basement! Jackson is keeping us very busy which is a good thing! He is finally able to get his belly off of the ground and crawl. I think he may finally lose some of his rolls! Of course he may just crawl into the kitchen and get himself some more snacks! He's not even 10 months yet and he is 25 pounds and wearing 18-24 month clothes! Guy started back to work today which will be good for him. He should have started yesterday but we decided we didn't have enough excitement in our lives and flooded the kitchen! Actually it was a malfunctioning washing machine but it was finally a problem we could solve.
I want to thank everyone who made it to Jaret's calling hours and service. I have looked at the guest book and I know there were several people who I never even greeted. I am very sorry. It was truly an overwhelming few days. I never could have imagined the number of people who came to pay their repects. It is an amazing feeling to see how much your child has touched others. I can't help but feel that I am truly lucky to have been chosen to be his mom!
I have to give many huge THANKS to the Westerville Police Department family. They provided days and days worth of food and arranged for a local church to allow us to use their premises for after the funeral (with more food of course). All of this in addition to the emotional and financial support. It is a huge relief when you don't have to worry about your job and maintaining insurance at a time like this. Just about every person from the department who I spoke to asked what more could they do for us. And I said they had done more than enough but many of them said simply, "No, we can't do enough." Our family is truly blessed to be associated with this amazing group of people!
I had many compliments on Jaret's services. I wanted it to be a celebration of his life instead of only focusing on the reality that he is gone. Many people heard about him through this journal or through family members or friends but never got the opportunity to meet my wonderful and amazing son. Everyone who was there got to see hundreds of photos and a video of him. There was some of his school work and artwork and lots of his favorite toys and stuffed animals. I think people could get a really good idea of the wonderful young man that Jaret had become. I need to send a big thank you to all of Jaret's classmates and their families. I was thrilled that they could all be there. I know this could not have been an easy thing for them but I think it was a positive experience for the kids. I soon realized the day was much tougher on their parents. This group of families is awesome and they embraced Jaret and our family three years ago when he started preschool.
The funeral service was perfect. Chaplin Meacham did a great job of making the day all about Jaret. He included the kids and allowed people to share memories and of course it was the kids who broke the ice and talked first. We were all quite shocked when Jacob got up and spoke. He did this all on his own! I was so proud of him! Jaret's best buddy and cousin Jordan spoke and then handed out tissues to anyone who needed them! I think she's going to do just fine in kindergarten! There were a lot of tears but a lot of smiles as well. As I said it was perfect. We ended the service with the balloon release. We went outside and there were the flashing lights of Jaret's daddy's police car....perfect!
I swear I will end this now. Again I'm sorry for the lengthy update but for now this is my therapy :-) The following was written for the service by Chaplin Meacham just for Jaret. It is very beautiful and well, just perfect!
WHAT IF?
What if an angel came to earth
And showed us His great plan?
A smile and love He came to share
And spread it O'er the land.
What if an angel came to earth
And helped us play life's games?
A baseball catch, grandpa's boat,
Or even Thomas' trains.
What if an angel came to earth
And gently touched our hearts?
A hug, a kiss, and a hearty laugh
Would truly be love's spark.
What if an angel came to earth
To help us understand pain?
A trust in God's promise to show us the way
to join Him once again.
What if an angel on this earth said,
"Pain, he'll no longer bear it"?
A "helper" I'll take to the throne of God
And He came and took our Jaret.
We know that Jaret's tasks are complete
Even though he is only seven.
God had a need for a helper like him
And he took him into heaven.
As always, thanks for checking in on us.
Tina
Sunday, August 20, 2006 0:02 AM CDT
I apologize for getting this information updated so late. We have been busy making all the plans so that everything is perfect for Jaret.
All services will be at Schoedinger Norris Funeral Home, 3920 Broadway in Grove City. Calling hours will be Monday from 2-4 and 6-8 p.m. The service will be Tuesday at 10 am. I will copy the obituary below that will appear in the Columbus Dispatch Sunday and Monday. I want to let everyone know that is thinking of attending - there will be no casket at the funeral. We will have lots of pictures and personal items of Jaret's and video as well.
This was a personal decision for Guy and I but I know that there may be kids coming and it may be their first funeral so I thought knowing that may help you prepare them. There will be a balloon release for the kids following the ceremony on Tuesday. I completely accept each parent's decision whether to let their children attend or not. I have a request for anyone who wants to do something for us. I would love to hear any special memories or anything about Jaret that will help us remember him best. I would like to be able to share these things with Jacob and Jackson as they grow up. It can be written on a card beforehand or there will be cards at the funeral home to write on.
I want to thank everyone for the overwhelming outpouring of support. We are truly blessed to have so many people thinking of us. A special thank you to the Westerville Police Department family. The food is much appreciated. You must think we all eat like Guy to send so much!
Jaret Michael Cerino, age 7, of Grove City, went to be a Helper Angel in Heaven on Friday, August 18, 2006.
Jaret was a compassionate, brave and unforgettable little boy. His amazing Smile and his pleasant and kind personality will always remain in our hearts and minds. His unparalleled bravery was truly an inspiration to all who knew and loved him.
Jaret attended the A.G. Bell School and was currently a student at Huy Elementary about to begin 2nd grade. He enjoyed swimming, tee ball, soccer, Thomas the Train, and video games. He especially loved doing everything just like his big brother, Jacob and his Dad.
Loving family, who will miss him dearly, include Mommy and Daddy, Tina and Guy Cerino; big brother, Jacob; baby brother, Jackson; grandparents, Jim and Ruth Ricketts and Tony and Linda Cerino; great grandmother, Dee Ricketts; aunts and uncles, Vicky Cerino, Mary (Joe) Cerino, Julie (Al) Zimmerman, Gina Bear, Teresa Ricketts, Tracy Ricketts, Tara (Brett) Unger and Amy (Ben) Hannah; cousins, Jordan, Jamie, Kristina, Angela, Tiffany, Nicole, Alyssa, Cassidy, Braedon, Samantha and Grace; many great aunts and great uncles; family friend, Connie hammond; the entire Hematology and Oncology department at Children's Hospital, especially Dr. Randal Olshefski and special nurse, Jenni Thornton; everyone from the Columbus Hearing Impaired Program and his special friends, Eden, Codey, Darren, Lydia, Casey, Caroline and Lennette.
He was preceded in death by his grandmother, Kathryn Cerino.
Calling Hours 2-4 & 6-8 pm Monday at the Schoedinger Norris Chapel, 3920 Broadway, Grove City, where his funeral service will be 10 am Tuesday, Aug 22, 2006 with Chaplin James H. Meacham officiating. A balloon release for the children will follow the ceremony. Please visit Jaret's website at www.caringbridge.org/oh/jaret to send condolences to his family. In lieu of flowers, please make contributions in Jaret's memory to the Children's Neuroblastoma Cancer Foundation, www.cncf-childcancer.org.
Thanks again for all of your support.
Tina
Friday, August 18, 2006 8:22 AM CDT
Jaret passed away peacefully at about 1 am this morning with me, his dad, grandma and grandpa by his side. I will update when arrangements have been made.
Tina
Wednesday, August 16, 2006 8:04 AM CDT
We've had to come to the reality that Jaret is not getting better and there is just too much going on in his body for him to overcome. His little body is tired and can't fight anymore. The doctors have promised to make sure he is in no pain. He has been sedated for two weeks so we're not sure how much if anything he can feel now.
I want to thank everyone for all of the messages of support. It means everything to us and I know that you will all be there for us when we will need it even more. Please keep Jaret in your prayers and hope that he can go peacefully and painlessly. A special prayer for his big brother would be welcomed as well. Jacob is nine and he doesn't understand. He tells me Jaret will come home. He believes doctors can do anything - if only that were true.
Tina
Saturday, August 12, 2006 10:31 AM CDT
I don't know what to say but I wanted to update. Jaret is pretty much the same. His kidneys and liver are a little worse. The doctors are pretty much saying the longer it takes for him to improve, the less likely it will happen. Time is just not on his side. He has visible bumps on his head that we know are cancer. Keep praying for a miracle that would give him atleast a chance to fight off this disease.
Tina
Thursday, August 10, 2006 9:03 AM CDT
I wanted to update again before I go to the hospital. Things with Jaret are about the same. They have been able to go down on some of the ventilator settings. Hopefully he will continue to tolerate these lower settings. He has a lot of air that has collected under the skin from the air leak in his lung. He also has two chest tubes in his left side to drain any air under his ribs that would be pushing on the lung. They can't think about taking him off of this vent until there is no air draining from the chest tubes and the air under the skin has been absorbed into the body. This would tell them that the air leak is better. His kidneys are about the same - not better but not worse. He is still producing urine and his electrolytes are still okay. He is having a few new problems. His liver numbers are up which could be caused by a few things including all of the medications he is still on or just the stress his body has been under or his cancer. As of two weeks ago though his abdomen was clear. The doctors are doing a lot of guessing at this point and I don't think they all agree which is very frustrating.
Please keep praying for Jaret. He's had the odds stacked against him before and beat them. I will update again in a few days. Thank you for your continued support.
Tina
Monday, August 7, 2006 9:08 PM CDT
Just a quick update. Jaret is still on the respirator. He has had some days of big progress and then it seems something happens to set him back. I've heard from the doctors that the xrays look about the same (of course, I've also heard they look a little better and a little worse) Its very frustrating that nothing has grown from any of the cultures so he is still on four antibiotics. These are very hard on the body and his kidneys are starting to show it. He may be headed for kidney failure again but we are hoping the numbers start heading back in the right direction. Also his catecholomines which can be a measure of disease activity are way up. We weren't surprised by this since he had been having so much pain before being put back on the respirator. We will have some tough decisions to make about what and how much we should do. No parent should ever have to make these types of decisions.
Right now I'm going to bed. I'm exhausted and hoping for an event-free evening.
As always, please keep Jaret in your thoughts and pray for him to start turning things around.
Tina
Friday, August 4, 2006 10:24 AM CDT
This has been the longest 2 1/2 weeks of my life! I feel like I've been on a constant rollercoaster with more downs than ups. I mentioned that Jaret was put back on a respirator on Tuesday. They had to change him to the same oscillating machine that he was on the last time. This was because of the air leak from his lungs. The pressures from the regular vent are too high and made this air leak worse which makes air go to his chest cavity and anywhere else it can go. By Wednesday morning he was so swollen he looked like he was ko'd in a boxing match. The doctor had to put in a chest tube to drain this air. This along with getting his oscillator turned down to lower pressure helped relieve most of the swelling. So yesterday he looked much better and he had a pretty good day. That should have warned me that the day couldn't be 100% without some drama. Besides his vitals, they monitor Jaret's blood gases to see how the vent is working for him. This tells then when they need to make adjustments up or down. The gases had been great all day and right before I left for Guy to take over, he had a really bad blood gas. The doctor came in immediately and examined him and they discovered his tube was plugged with mucous so they had to hurry and put in a new tube. He was very lucky that they pulled this blood gas when they did because his vitals hadn't shown any indication of trouble which is usually how they find out. The attending doctor this week is named Dr. Craenen. She's about 90 pounds and about 80 years old and she's a very good doctor. She reminds me of my grandma and that's how she treats Jaret. After the minor (okay, major) emergency last night with needing the new tube, she said he was such a little stinker. I found that pretty amusing but she also said he was a very tough kid which we knew but its also nice to hear. As for the pneumonia, it is slightly better as of yesterday's xray. I hope we can find out today what the plan is for the next few days.
I want to thank everyone who has called, sent cards, birthday and get well wishes to Jaret. I don't think he could ever realize how much he has touched those around him. I especially want to thank all of our friends and family who have reached out to us. We are extremely blessed to have our extended family at CHIP (Columbus Hearing Impaired Program) and the Westerville Police Department to support us. Thank you also to all of our friends at Children's Hospital. I can never thank you all enough for everything you do for us every day. This includes everyone from the radiology staff to the clinic nurses to our little fellow NB fighters Eden and Codey and their families. Thank you, Thank you!!!!!
I will update again when I can. Guy is hoping to take Jacob to Indianapolis Sunday for the car race at the Brickyard. Jacob got the tickets for his birthday and he and Guy have really been looking forward to it. So we are hoping for a couple of days of good recovery for Jaret with no drama! I was so stressed after yesterday that I got such a kick out of just watching Jackson sleep in his crib last night. Please keep the good thoughts coming Jaret's way!
Tina
Wednesday, August 2, 2006 2:36 PM CDT
Just another quick update. Jaret is still in PICU and last night they had to put him back on a ventilator. He has an airleak in his lung and so to prevent the lung from collapsing they put in a chest tube to relieve the pressure. It was a very rough night for him and hopefully things will start to turn around for him. The doctors have added one more antibiotic to cover one rare infection that Jaret may have. Please pray that this helps and his lungs can recover from all of this.
More later...
Tina
Monday, July 31, 2006 7:39 AM CDT
We celebrated Jaret's birthday with as many friends and family that we could get into his room. He opened the presents but didn't have a whole lot of energy. He had been having trouble all day with his breathing and keeping his oxygen saturation up. Xrays showed that there is something more going on in his lungs but once again they don't know what - blood again, infection, fluid?? He is also still having unexplained fevers. They are testing him for some viral infections but so far nothing has come back positive. Just in case they have put him in isolation.
And just a few hours after his party ended, he ended up back down in the PICU. As I said he was having more and more trouble all day and I was actually grateful that PICU decided to take him down. Things can happen pretty quickly and they are equipped to handle them. Guy said he had a pretty good night. They have him on a Bi-Pap machine that puts pressure down into his lungs and keeps everything open. Its not pretty looking and it looks very uncomfortable having this mask strapped to his head but he slept quite a bit. I guess we really wore him out with his party!
Please keep Jaret in your thoughts and prayers. And hope the doctors can figure out what going on and how to make him well quickly.
As always, thanks for checking in on us!
Tina
Saturday, July 29, 2006 9:54 AM CDT
HAPPY 7TH BIRTHDAY JARET!!!!!!
Actually tomorrow is Jaret's birthday but I didn't know if I would have a chance to update. Maybe I will have better news to report tomorrow. The last few days Jaret has taken a few steps back on his road to recovery. We haven't been able to get him off of the oxygen and now they have increased it to more than he was on when he came up to J5. To complicate matters he has been having fevers again. He has been on antibiotics for two weeks and he has a good white blood cell count. Nothing has grown on his cultures so the doctors can't figure it out. His xray today was a little worse so they want us to get him sitting up and out of bed and practicing more with his breathing so we don't end up back in the PICU. He is not happy about this because he in a lot of pain. Some of this we know is disease but we don't know how much. Add to this that he has a fever and has been in bed for two weeks and you have one unhappy almost 7 year old.
The few times I've seen him show any hint of interest is when he had some visitors other than the usual mom, dad and grandparents. He had some visitors from school - Casey and Lydia and his teacher from the past two years, Mrs. Pat. This meant the world to me and I know Jaret was surprised and happy to see them - even if he couldn't really show it. His aunts and cousins came for a visit last night and he was happy to see Jordan especially. My sisters are helping put together a small party for Jaret tomorrow so I hope he is up to a little fun.
Please keep Jaret in your thoughts and pray that he can get over this bump in the road. I hope that the doctors can discover the cause of the fevers and help him feel better.
Tina
Wednesday, July 26, 2006 9:56 PM CDT
I went with the Fish background because one of the first things Jaret told me after being extubated was that he was going to go fishing on grandpa's boat. Of course grandpa had spent the afternoon trying anything and everything to make Jaret laugh or crack a smile so I'm sure he promised him some fishing (and if grandpa knew how to say Disney World in sign language he would have promised him that too!)
Jaret is doing better and he seems much more comfortable now that he's out of the PICU. He's still on oxygen but we are cutting it down a little each day. He is having some significant pain in his left hip and his right foot. I'm sure the hip is disease since he has had it there in the past and the foot I don't know but I am assuming it's also disease. I may sound like a pessimist but neuroblastoma is just relentless. Hopefully I am wrong and I will gladly admit it! The doctors are switching him to some longer lasting pain medication rather than taking some every few hours. His disease is in his bone and it is a constant pain so we are trying to find him some consistent pain relief without knocking him out. After talking to Jaret's oncologist last night about this pain he quickly set up scans for him. We did a CT and bone scan today and will do an MIBG next week. The results will be sent to CHOP and then we will try to come up with the next plan. Jaret has to do all of his scans without sedation because his lungs are still recovering. He did great today with the bone scan but the big test will be next week with the longer MIBG but I know the awesome nuclear medicine staff (Laurie, Karrie and Darla) will get him through it :-)
Needless to say Jaret is pretty weak and a little mad at the world right now. Actually he just seems really sad. We are hoping to get him up and moving around more once he is off of the oxygen. He did get a much needed pick-me-up yesterday in the form of Princess Eden Adams (her website link is below). I'm so mad that I missed it but I guess he just broke into a huge grin when she came in with her stepmom Shelly. Jaret and Eden and Shelly and I have become friends over the past few months from our many shared days in the clinic. So when Eden found out that Jaret needed to start eating, she brought him donuts and got him a popsicle, snacks and a coke. My mom had never met Eden and got a huge kick out of her. She said she was such a mature and independent 6-year-old and fully supported her goal of becoming a doctor since she gave Jaret better medicine that anyone else could! Eden is learning sign language and really tries to talk to Jaret while other kids just don't know what to do. He also likes that she has a bald head like him. Thanks Eden and Shelly! We also want to wish Eden good luck as she heads to CHOP in a week to do the MIBG treatment!
Jaret also got to see his brothers today and he smiled again - apparently he prefers smaller, younger visitors! I think he may get another surprise visit from another young friend tomorrow!
I think our hopes of being out by his birthday on Sunday are quickly fading. I haven't even asked because I don't want to rush it and I am just so happy he's out of the PICU and off of the respirator. He still has a few days left of antibiotics and they want him start eating more. If we have to celebrate on J5 then we will give him the best birthday we can in a hospital room! I still owe him a party for his friends when he is feeling good enough to whack a pinata which is still a few weeks off I think.
Thanks for all of your support! I have Jaret's room plastered with all of his e-cards and greeting cards. Thanks also to my family for all of the help with the boys and the meals which isn't much different than what you do every other day, but thanks! My sister Tracy will be driving here in the morning from Chicago so we will all be together again. I think we may need a bigger hospital room...
I will update again soon!
Tina
Tuesday, July 25, 2006 10:05 AM CDT
Jaret was moved out of PICU last night onto the oncology floor/J5. He is still requiring a small amount of oxygen but hopefully we can wean him in the next couple of days. I asked a PICU nurse if this was a concern and she said it would be expected to require oxygen for a while and that most people wouldn't even be off of the respirator yet! It's a little unnerving how amazed the medical staff is at Jaret's quick turn around. He is actually feeling a little better and has almost cracked a few smiles. He's also communicating more and much more alert. He is a bit attached to his oxygen - this from the kid who would rather you stick a needle in his arm rather than put a mask on him prior to surgical procedures. We did get him to switch to the nasal cannula which makes it a little more comfortable for him to eat and drink and hopefully smile a little more!
I'll update again soon. My sister Teresa is in town and mentioned letting Jaret use her laptop at the hospital so I can update bedside! Keep the good thoughts coming!
Tina
Saturday, July 22, 2006 10:40 PM CDT
Well, things are looking better for Jaret today. They took him off of the respirator this afternoon and so far he's done fine. He is still on oxygen but that isn't unexpected. He also got his urine catheter and his G tube out and they should be removing his arterial line and another central venous line that were placed this week. I think everyone in the PICU is surprised by Jaret's progress. In fact, the attending doctor today said he was very lucky. There was so much blood coming out of his lungs when they intubated him that they couldn't see where to go! Its much easier to hear this now rather than five days ago - I definitely would have lost it! My dad actually stayed in the room when they intubated him but I knew it was going to be bad so I had to leave. I know now more than ever how much of a fighter Jaret is and I will never complain again about how stubborn he is :-)
They still have him on four antibiotics. Nothing grew from any of the cultures but they just don't want to take a chance that one of these medicines is helping him. So it may be one of life's great mysteries as to whether he had pneumonia or not! I personally think that he had a small infection or cold that we would never have found out about had he not started bleeding internally. He is still receiving platelets almost everyday. They want to keep them above 20,000 to avoid anymore bleeding. Hopefully his own stem cells will start doing their thing and making his own platelets (soon!). Jaret is also on a blood pressure drip to keep his BP down. He has high BP normally but its been much more erratic since he's been hospitalized. They mentioned getting him switched over to his regular oral medication. Once that happens I think we can move up to J5 - but this could still be a few days away.
They took him off the sedative/pain medication and so he was much more awake tonight than he has been and starting to feel the effects of this horrid week. He was asking about his brothers and today said he wanted to go home. I said he had to wait and he started crying! This was the first time he cried all week and it really broke my heart. Guy is with him now and he did finally get to drink some water so I hope he is feeling a little better tomorrow. He is going to really be mad though when he realizes how long he's been in the hospital. He missed his friend Caroline's birthday party and he probably won't make it to his friend Lydia's this weekend. We'll try to make it up to him. Jaret's 7th birthday is next Sunday, July 30th, so I hope we can be home for that, but if not we will have a big party in the hospital! I promised him a party for his friends this year so we will have to get that scheduled before school starts back up.
Thanks for keeping Jaret in your thoughts. Its definitely helped us! We are hoping for an uneventful few days with Jaret making some progress each day and getting back up to the heme/onc floor so he can see some of his buddies up there. I know his brothers and cousins are very excited to see him as well. We will think about fighting cancer again in a few days.
I will update again soon...
Tina
Thursday, July 20, 2006 9:29 PM CDT
Sorry its taken so long between updates. I've only left Jaret's room a few times and that's when my mom makes me go to the cafeteria to eat. Its good to know that no matter how old I am, mom and dad still take care of me. Well, overall Jaret has gotten a little better each day. Today, they converted him from the oscillating ventilator to the regular respirator. This machine is much easier on his body and much more like normal breathing. The oscillator shook his chest to move the air around since his lungs weren't expanding. This is a very unnatural way to breathe so they had to keep him sedated and paralyzed with medicine (very scary, I know!). They were able to lift the paralysis this afternoon which was a huge relief. When I came back after a quick trip home he was awake and telling grandpa and his daddy that he wanted milk. This is one of the benefits of sign language - you can talk while on a respirator! Of course we had to disappoint him and tell him he had to wait for the milk! I was just so happy to see him communicating and looking at us all. There were a few times over the last four days that I wondered whether I would get to talk to him or see him look at me again. We aren't out of the woods but we can see the light through the trees. Of course, once we get over this huge hurdle, we have to fight this horrible neuroblastoma - can I say this really sucks?!
I think we will be in the PICU for a while which is fine but I would love to see that tube come out soon! Over the past 4 1/2 years we have had a few lengthy stays in the PICU which is never a good thing, but you get to know some wonderful nurses and doctors. Most of the attending doctors all know Jaret from his previous PICU stints and that makes it much easier to put your trust in their decisions. Dr. Khan made the call to put him on a respirator Monday and I didn't question him. He pulled Jaret through one of our worst nights ever 3 1/2 years ago and I will never be able to thank him enough - yet again.
Some other positive news is that Jaret's blood counts are starting to come up from the stem cell boost from two weeks ago. His white count is 9.7 (normal) and his hemeglobin is 12.2 (also normal). His platelets are not yet there and he is still requiring transfusions but we are using the HLA matched platelets and they are holding up pretty well.
I am completely exhausted from four nights of stress and worry and a hard loveseat for a bed so I am looking forward to a nice comfy bed tonight while Guy has hospital duty with Jaret. Guy's twin sister Gina headed back to Wisconsin today. She was here with her three kids and was a huge help with watching the Jacob and Jackson, cooking and doing all of our laundry (I hadn't seen some of those clothes for years!) A big thank you to Gina and Alyssa, Cassidy and Braeden for keeping Jacob and Jackson company! Guy's dad and stepmom also helped us out by watching all five grandkids so Guy and Gina could come to the hospital - Thanks!
My brain is mush! I think its time for me to hit the sack! Thanks for all of the e-cards (www.columbuschildrens.com) and uplifting messages in the guestbook! I have the cards up on the wall so Jaret can see them when he's not so drugged up! Thanks again and Good night!
Tina
Tuesday, July 18, 2006 2:20 PM CDT
Sorry I didn't get a chance to update yesterday. We are still in the PICU at Children's. They are still not sure if Jaret has pneumonia but he has something in his lungs. They made the decision to intubate him yesterday so now he's on a respirator. He had a lot of blood in his lungs from low platelets. The xray today was much better but there is still a little something there. Dr. Khan from ICU feels that there is some pneumonia and so he's on four antibiotics to cover all of the bases. They took blood cultures and a culture from his lung but so far nothing has grown. If and when something does they can narrow down his antibiotics to target the specific infection. Part of the problem has been that he has had such a low platelet count for two months. His body finally had enough and produced an antibody to fight off the platelets. So even though he got 4-5 platelet transfusions Sunday his body was eating them up. This caused alot of the bleeding that filled his lungs. The doctors have had to work with the blood bank to find platelets that more closely match his own. He got a transfusion of the cross matched platelets and we wre thrilled that his platelets went up to 35,000 - they were less than 5,000. For now they are trying to keep him stable and gradually move him from the oscillating ventilator to a regular respirator. This will be a slow process and so we will probably be in the PICU for the forseeable future. They have him sedated and paralyzed with medicine so that he doesn't aggravate anything and cause more bleeding.
Sorry for such a quick update. I will update again when I can. Thanks for checking in on Jaret and keeping him in your thoughts. If you would like you can go on www.columbuschildrens.com and send him a e-card - we are in PICU 18.
Tina
Sunday, July 16, 2006 6:59 PM CDT
Just a very quick update - more later... Jaret was admitted into the PICU today with what they think is pneumonia. He's on three antibiotics and medicine to maintain his blood pressure. Hopefully I can update more tomorrow.
Tina
Thursday, June 29, 2006 10:47 PM CDT
As you can see from the photo above, this trip to Philadelphia was much more enjoyable for Jaret. The last time he was in so much pain that we hardly got any smiles out of him and this time he was being quite a ham for the doctors and nurses! This smile is how we know that the MIBG really helped him and the reports show the same thing. It was a little shocking to see his scan from the last trip. It would be easier to tell you where there wasn't disease in his bones! The scan from last week was noticeably improved. There is still disease in the rib, skull, shoulders, thoracic spine, distal femurs, proximal tibia - I copied this from the report in case there are any medical personnel out there. This, of course, is still a lot of disease, but all of these areas have less uptake than before (that's good!) The better news is that most of the lesions previously seen on the spine, distal humeri, right forearm, pelvic bones and proximal femurs do not show up now! I feel the need to put a big BUT in here - the MIBG has this ability to reduce disease load very quickly BUT it can (and often is) temporary. So our hope is that Jaret shows further response from this second MIBG treatment and then we can take advantage of this reduced disease load and follow up with some type of new treatment long term.
As I said Jaret really got to enjoy himself in Philly. He got some quality playtime in at the Ronald McDonald House and even in the hospital playroom the night before his injection. But then it was off to his hospital bed for two days! He busied himself with video games, Wallace and Gromit and Tom and Jerry DVDs and playing with his collection of McDonald's Happy Meal Cars. Guy took Jaret and Jacob to see the movie Cars before we went to Philly and they all loved it. So since then we have spent alot of time at Mcdonald's trying to get the entire collection of cars. **A little editorial here - whoever thought of this marketing tool needs to be put in jail or better yet take a child to McDonald's when they don't have the toy they want!!** By the way, if anyone out there has the small yellow McDonald's toy car (Luigi, I think) please send it my way - I will pay you for it!! My sanity and my waistline will be indebted to you!
Let me get back on track... Jaret was released from CHOP on Friday and my dad drove the entire 9 1/2 hours home. We are not very fond of the Pennsylvania Turnpike at this time! We spent the weekend with my sister's family and the grandparents. We went to a local fire department's fish fry and on Sunday spent the day with their cousins in grandma and grandpa's swimming pool. Jackson got in the pool for the first time and loved it. I predict that he'll be swimming before he's walking - its much easier to carry that belly of his around in water! While we were in Philadelphia his first two teeth started coming in. Now he can start eating some real food! Jacob has been playing lots of baseball and he's getting pretty good. He has a great coach who is really teaching the kids the game and stresses fun! Yesterday, Jacob got to go fishing with my dad up at Lake Erie. Jacob loves to go on grandpa's boat and my dad enjoys having someone along who he can teach the finer points of catching walleye.
We've been getting back our routine here - clinic visits, more transfusions and more shots. Since the first MIBG treatment Jaret has had 22 platelet transfusions and 8 red blood transfusions - Wow! Thanks again to all those generous blood donors!!! Jaret got about a week off from the G-CSF shots to increase his white blood cell production but we had to start them back up Monday. He has every right to scream and kick when he gets these but he doesn't and I can't say how grateful I am for that! Jaret has also started his summer speech with his school speech teacher. She does a great job with him and he's really starting to produce some good sounds. It takes a lot of hard work to learn how to produce every sound but he's getting there!
I think that's all the news from here! What's next for us? Well, after enjoying some fireworks this weekend, we will be back to more of the same next week. Friday, July 7th is a big day. Jaret will be getting some of his stem cells back. These were his own stem cells that were harvested over four years ago for a potential transplant that didn't happen. The stem cell rescue will boost his blood cell production and gradually increase his white cells, red cells and platelets so he won't be dependent on transfusions and so he can be eligible for other treatments. We will rescan around the first week of August and evaluate his disease status. Dr. Maris from CHOP will coordinate with Dr. Olshefski here and come up with some options - either in Columbus, Philadelphia or possibly in Cincinnati. But, before all of that we have a more important event - Jaret' 7th Birthday!!!! We are going to throw him a big party for all of his friends (if any of his friends' parents are reading, please let me know if the weekend of July 30th is open - we want you all there!)
OK, I promise - I'm done! Thanks again to all of you for keeping tabs on us. We appreciate all of the good thoughts! Happy 4th of July!!!!
Tina
Thursday, June 15, 2006 10:19 PM CDT
Hello to you all! Things are going well here. We have had great weather and the kids are all out of school for the summer. Jaret had a week of testing to determine how his disease has responded to the MIBG treatment. I was cautiously optimistic and Dr. Olshefski confirmed the good news today. The MIBG scan was vastly improved! There were a few areas that still showed uptake but even these areas were much improved (right elbow, knees and skull). Many of the other areas that were previously lighting up did not show up at all this time! Also, the bone marrow biopsies and aspirate, which were double digit percentages the last few times, showed a great response as well. They saw one small cluster on the right side and the left was clear - yeah!! So, next up for Jaret is to hit his disease again with the MIBG treatment. We will be admitted to CHOP next Tuesday and the MIBG will be given on Wednesday. His blood counts are still recovering from the last treatment but we can't wait. Neuroblastoma can gather steam and take over very quickly. Jaret's ANC (absolute neutrophil count) and his white count - which both measure his ability to fight infection - are on the rise but still low. The ANC is up to 900 and the white count 2.2. His platelets are another story. He's been getting three platelet transfusions a week for four weeks now. He's also been getting one or two red blood transfusions each week. After this next MIBG treatment, we will probably have to give him back some of his stored stem cells in order for his counts to recover. The stem cells have been in storage for four years and thankfully we have a few large bags. Many of the treatments available for relapsed neuroblastoma require patients to have these stem cells. So, please keep Jaret in your thoughts as he goes through this treatment next week. He is feeling so well right now and all we can hope for is that his disease will reduced even further by this second dose of MIBG.
The boys were very excited for school to be over even though Jaret hardly made it at all the last month. He did manage to make the last day and then we had a great night out with all of his classmates and their families and his teacher. I am so thankful that Jaret has had the privilege of being with such an awesome group of kids for three years! We love you Caroline, Darren, Lydia, Lennette and Casey!!! He has also had great teachers and for the last two years he has had Mrs. Pat. She is great with these kids and has taught Jaret so much - not just academics but how to be a great friend and a good person. I never dreamed that when he was first fighting this monster four years ago and then lost his hearing that he would be on track as a second grader. He is a little behind but we are hoping to get him ready to go for the fall. Jacob's road through third grade was a bit rocky at times, but he had a good end to the school year. He had to take the dreaded achievement tests for the first time this year. He is not always the best test taker but he did extremely well on both the math and the reading tests. He is so proud of himself but couldn't be more proud than Guy and I are.
Jackson continues to grow up and out. He is seven months old today! He is so much fun and for the most part he's a very happy baby (he has his moments!) Jacob and Jaret love to play with and fight over him! Check out the picture of Jackson with his new haircut in the photo album!
We also have a budding rock star in our family - no, not you, Guy! Jacob got a drum set for his birthday and has been entertaining all of us (what were we thinking!) It's so funny because you can feel the vibrations so strongly that Jaret will tell Jacob to "shhh!" when he doesn't even have his cochlear implant on. He will be putting on a concert soon. I'll let you know when his first CD comes out! Ha Ha!
Well, I think that's all for now! As always, thanks for your support! If you have thought about it but haven't, please consider giving blood. It has really hit home since Jaret is getting 4-5 blood and platelet transfusions per week. I realized there are some very generous people out there. Thank you all!
I will update when there is more news.
Tina
Tuesday, May 30, 2006 10:31 PM CDT
I know, I know!! It has taken me way too long to update. Nothing is wrong except that I am usually exhausted by the time I get a few minutes to update. We are getting back into the routine of long and frequent clinic visits. I will try not to get too long winded.
Jaret has been feeling great! His blood counts are bottoming out but he has more energy now than when we first got home from Philadelphia. I am taking this as a good sign but I am still very anxious about his upcoming scans the week of June 12th. His platelets are so far the biggest issue. Last week he needed 3 platelet transfusions and one red blood transfusion. A normal platelet count for Jaret would be over 150,000 - his was 7,000 - 10,000 last week. Yesterday I took him to the ER because I knew his platelets were low again but I have never seen them that low - below 4,000! Low platelets cause bleeding so it can be very dangerous. He bruises very easily and has bruises of every color all over his body. Try telling a 6 year old to slow down and be careful - its like a dare to him! In addition to this, his ability to fight infection is very low (white blood count). I had to start giving him neupogen shots to boost his white blood cell production. I was a little worried about these since it had been three years since he had them and I used to have to sit on him so he couldn't move his legs when I gave them. He's a little bigger and alot stronger now so I was pleasantly surprised that he did very well with the shot. He tells me where to give it and then stays perfectly still and watches that I do it correctly. This just amazes me and the rest of my family. We're not sure where he gets this from because both sides of the family has a bunch of wimps when it comes to stuff like this (especially the males, sorry guys!) Because of the platelets and low white count I have mostly kept him out of school. I really want to try and avoid any chance of him getting an infection but I am hoping that he can make a few days for his last week. Three of his five classmates will be going to different schools next year so I want him to enjoy a few days with all of them. He has been with them for three years and they are all best friends. We know they will succeed in their new schools (but we'll miss them so much!) Jaret is moving on to the second grade but he will be a bit behind the others because of all the missed school. I have him signed up for some tutoring and speech therapy through the school this summer so hopefully he can catch up a little bit.
As I mentioned Jaret has been feeling extremely well. It's hard to believe that just four weeks ago he was in too much pain to walk and on some powerful pain medication and now he is off all pain medicine and has only complained of pain(in his ribs)a handful of times. I am hoping this translates to much improved scans in two weeks. Besides the low blood counts which were expected the only other unexpected side effect was that he lost quite a bit of hair. We thought this wouldn't happen with the MIBG treatment but he's pretty thin on top. Its not a big deal though - now he just looks even more like his daddy!
As for the rest of us, we are doing well too. Jacob just had a birthday. He is now nine years old and after Thursday he will officially be a fourth grader (unless there's something I don't know!) He is enjoying playing baseball this summer and I'm grateful that we can manage it since I know he misses out on a lot because of Jaret's treatments. Jacob and Jaret spent alot of time swimming at grandma and grandpa's house this weekend and I'm sure they will get in much more pool time when school is out. They love it so much. They are also both very excited to go fishing on grandpa's boat soon. Jaret will have to wait until his counts come up but hopefully he can get a couple trips in. Jackson is just growing more and more. He is now six months old and at his checkup he already weighed over 20 pounds! He also got his first haircut! I'll try to add a picture soon - he is so cute, but he doesn't look like a little baby anymore!
Well, it's late and I think I've hit all of the high points. The plan for Jaret is to do scans again in two weeks. CHOP would like to do another MIBG treatment (and so would we!) but it depends on a few things. He would have to have improved or stable scans which we think he will based on the reduction in pain. The other factor is that his blood counts have to recover without needing a stem cell rescue. Jaret has plenty of stem cells but if he needs them now they won't do the MIBG treatment again and we will have to go to plan B which would be another chemo (not sure what though). So please pray that Jaret's counts start to move in the right direction and that we see an improvement on his scans and in his bone marrow.
As always, thanks for keeping Jaret in your thoughts and prayers. It means the world to us!
Tina
Sunday, May 7, 2006 1:19 PM CDT
We are back in Ohio! After getting stuck in Philadelphia rush hour traffic and a very long nine hour drive, we arrived home at 1 am Saturday morning. Thank you Dad for driving the whole way! Thankfully, Jaret slept comfortably most of the way home. He is pretty worn out from the past two weeks from the treatment and all of the new medications and not eating for over a week.
Jaret was really not doing well when we arrived at CHOP last Sunday morning. We went straight to the emergency room after driving all night. He was in a considerable amount of pain and his eye was swollen shut. I added a picture in the photo album of him at the hospital last Sunday. I was so afraid that these new and rapidly progressing symptoms would change his treatment plan but thankfully the doctors felt that the MIBG was the best thing for him. He got the injection on Tuesday and then we just waited for what at the time seemed like a miracle. They also had him on pain medication and antibiotics for his eye since they couldn't determine for sure whether it was disease or infection. The eye swelling gradually has come down and the pain is mostly gone though he is still on pain medicine at home. We had an MIBG scan on Friday to make sure the radioactive material was in the places that he had disease. Dr. Maris called me on the way home after looking it over. He said the scan was very bright in all the right places so we just hope now that it does the job and kills alot of the cancer cells. The eye also lit up so it may have been just disease or a combination of disease and infection. Dr. Maris was very pleased that Jaret was looking and feeling better. He will hopefully improve more over the next week or two. For now, Jaret will need to get labs done twice a week here in Columbus. As his counts fall he will need to get blood and platelet transfusions. Hopefully his body will start producing these blood cells again without needing his frozen stem cells. I am hoping he can do the MIBG treatment again if his disease responds to this first dose. At this point we are cautiously optimistic. He will get scanned again in six weeks so we will know for sure then.
I was so glad to get home and see Jacob and Jackson. I think Jackson put on a few more pounds while I was gone. He and Jacob seemed happy to see Jaret and me Saturday morning. Jacob made pancakes for Jaret because he said he wanted to help Jaret get his strength back. They can be so sweet sometimes (but only for a few minutes at a time!) I am hoping Jaret will make it back to school later this week. I think that will do wonders for him. I have to start planning Jacob's 9th birthday. I'm hoping to convince him to let us have the party a few weeks after his actual May 15th birthday. He gets to go to see the Cincinnati Reds on Adam Dunn Day (his favorite player) next Saturday thanks to Aunt Tara and Uncle Brett! Jacob deserves some special treats and a great birthday party!
That's all for now. Hopefully we can have a normal, emergency-free few weeks and enjoy the nice weather. Thanks for checking in with us!
Tina
Thursday, May 4, 2006 3:54 PM CDT
Can you tell by my background choice that we miss the Buckeye State? I wanted to update once more from the "City of Brotherly Love" - although by the way they drive around here there's not so much of the love. I have managed to find my way around for two days in a row without getting lost!
Jaret is feeling much better today. His eye swelling has gone down to where he can open it. He was playing video games for a few minutes and drawing but mostly watching cartoons. I can't tell you how nice it was to here him giggling watching Tom and Jerry! Who cares if they were beating each other senseless! He still hasn't eaten or gone to the bathroom but I'm hoping once he does #2 he will feel like eating again. We may get a pass home tomorrow. He gets his foley catheter out in the morning and then he has an MIBG scan to see where the medicine is. They had warned us that it will look worse than any recent scan because he has alot more radioactive isotope in him so it will pick up more areas of disease. And if its lighting up, the medicine is there and hopefully kicking that cancer out of there! This is obviously a layman's description but you get the idea. They will be switching over his pain medicine to an oral form so we need to make sure that this is working before we leave so we could be here until Saturday.
I will update again once we get home. Thanks to everyone for all of the guestbook messages! They are so nice especially when you feel so isolated here. I haven't even figured out how to access my email away from home! Thanks as always for keeping Jaret in your thoughts!
From Philly,
Tina
Tuesday, May 2, 2006 7:05 PM CDT
I wanted to give a quick update from here in Philadelphia. We arrived here on Sunday morning and came straight to the emergency room. Jaret's pain had increased considerably and the pain medicine wasn't keeping him comfortable enough so we made the decision to leave at 12:30 Saturday night. I mentioned before that his left eye was starting to swell and by the time we got here it was swollen shut! So after a long day in the emergency room, we got into a room on the oncology unit. I still haven't heard the results of his scans last week but it is fairly clear that his disease is progressing. The eye may or may not be an infection - it's not clear on the CT scan done Sunday. Neuroblastoma does get into the eye orbits but it is usually behind the eye and in the bone of the socket. Jaret's swelling is only in the soft tissue in front of the eye. So, he is getting antibiotics in case it is infection. And so far it seems that the swelling is going down slightly.
We got a room at the Ronald Mcdonald house so my dad and I are taking turns trying to get some decent sleep. This RMH is so beautiful and its such a wonderful place for families away from home. Philadelphia is home to the first RMH! We have seen some familiar faces here as well. The Thomas family - mom Angela and daughter Christi - from Ohio are here while Christi has scans. We met briefly in Columbus Childrens when she started her treatment for neuroblastoma. She has been fighting this battle non stop for 3 1/2 years and been treating here at CHOP over 2 years. I truly appreciate all of the helpful information (and tasty cakes!) from these CHOP veterans - Christi has been through this treatment twice! A link to Christi's website and blog are under "Links."
So, Jaret's pain is being managed a little better here. He is on a pain pump that we can increase when needed. Today we started the MIBG treatment - finally! He got the infusion at 1:15 today and now we just have to wait and see how it works. We won't rescan for six weeks but I think we will know much sooner if its working. One of the doctors said that the MIGB can work fairly quickly to relieve pain caused by disease so we hope that is the case with Jaret. They will be monitoring Jaret's radiation levels daily and when we get down to that magic number "7" we should get to go home. It could be as early as Thursday but we won't be holding our breath. We just want him feeling better and if we have to stay here another week we will do it. It may just take me that long to figure out how to maneuver around this crazy city!
That's all for now. I may update again tomorrow. Please keep Jaret in your thoughts and prayers and hope that this treatment does some major cancer butt kicking! The motto at CHOP is "where hope lives" so that's what I am trying to live by!
Goodnight from Philly!
Tina
Friday, April 28, 2006 9:45 PM CDT
I took this picture today of Jaret's awesome first grade class - the Super Six! Jaret has been with them for three years and they are all best friends! You have to check out all of the cute messages they wrote in the guestbook! I am hoping to throw Jaret a huge 7th birthday party this summer so he can celebrate with all of his friends. We just dropped into school for a few minutes today after his CT scan. This will be his last day at school for atleast a week so I wanted him to get a chance to see Mrs. Pat and the class before we head to Philly.
We are leaving Sunday morning for the long eight hour drive. Jaret has had a rough couple of days so Tuesday's treatment can't get here quick enough. He was having neck pain earlier in the week but that seems to have resolved itself - we think he pulled a muscle or something. Wednesday morning he said his left knee hurt and by the afternoon he could barely walk on it. I kept him home yesterday from school so he could have the whole day to rest, but by last night it seemed everything was hurting - his arm, back, side and his eye which seems to be swelling now! It is so scary how fast this all happened. I hope and pray that this will not effect his treatment starting on Tuesday. Today we stopped by the clinic so they could take a look at him. The doctor gave us a prescription for a stronger pain medication if we need it. He's pretty much laid up on the couch sleeping alot and not eating much. I hate this all more than I can say!!!
I've added a link that explains the MIBG treatment in neuroblastoma. It is from the University of Michigan where the treatment was developed (those wolverines are good for something! just kidding!) The link is at the bottom of the page under LINKS
You would think that as much as I have been anticipating this treatment for Jaret that I would be a little more prepared, but I am not. I still have to pack for Jaret and myself which requires me to do several loads of laundry. I also have to get Jacob and Jackson set for a week with Daddy! This requires me to do yet more laundry. I just found out that Jacob has a report due next week so I am hoping to help him start this (this is not Daddy's area!) I may have to ask my mom to help him type it up which should bring back memories for her since she typed many reports for me in the wee hours of the morning! This of course was back when we only had typewriters and you had to retype a whole page after any tiny mistake, which was usually the last line on the page. Kids have it so easy these days! However, I don't remember ever doing reports or homework in the third grade! If you can't tell, I'm a little reminiscent today. I was watching Jacob play baseball on the same field where I played softball many summers ago - those carefree, worryfree days of summer...
Okay, back to reality... We will be admitted to CHOP on Monday and start the MIBG treatment on Tuesday. We should be released from the hospital by Friday and then we will make the trip home. I am not expecting Jaret to get immediate relief from the treatment but I am hoping his symptoms will ease up before they get any worse. When we get back I will have to get on the ball and plan Jacob's birthday party. He will be nine years old on May 15. I will have to think of something really special to surprise him with (no, Guy we are not getting him a mini bike!) I know this is has been harder on him than we realize. Due to our busy few weeks we messed up and missed Jacob's Donuts with Dad day at school yesterday. We felt so bad but Jacob just said it was okay (he could have really worked up a big guilt trip!) Guy was probably more upset than Jacob - you know how those cops love their donuts!
I had mentioned before that we taped a segment for a Cure Kid's Cancer radiothon to support Children's Hospital. The last day is Saturday, April 29th and its on three radio stations - 98.9, 106.3 and 107.5 FM. I did hear most of our interview and it sounded pretty decent. I am hoping to catch the whole thing again tomorrow.
I will try to update while we are in Philadelphia with any news. I am going to miss Jacob and Jackson so much. I've never been away from either of them for this long before. They will have so much fun with daddy that they probably won't even miss me :-)
I think that's all for now. I really need to get started on that laundry. Please keep Jaret in your thoughts and prayers next week and hope that this treatment kicks some cancer butt!
Have a good weekend!
Tina
Thursday, April 20, 2006 11:00 PM CDT
After a few weeks of worrying that nothing was happening with Jaret's treatment plan, now his calendar is filling up quickly with appointments. But, I will get to all of that later. First, I hope that everyone had as wonderful an Easter as we did. The kids had so much fun with the Easter egg hunt and as usual there is still one egg missing! Every year my parents buy the kids one gift like a video or small toy. So it has evolved into a fun game for the kids to find their gift. They get one clue that leads to about 5 or 6 other clues until they find their hidden treat. My mom got way into it this year and poor Jacob had to call his Aunt Teresa in Chicago for his last clue which was "it's in a tree." There are probably 30 trees in my parent's yard! But he managed to find it before it rained. One year the gift was buried in the garden and when we went to dig it up we couldn't find it. After guessing that the neighbors probably didn't steal it, we of course found it several feet away. The kids have more fun on the clue hunt than anything else.
I mentioned last time that we were doing a radiothon taping for Children's Hospital/Cancer and Blood disease fundraiser. WEll, I didn't totally embarrass myself so I will give you the details. It's going to be April 27th - 29th on 107.5 FM. Now I'll prepare you - this is an urban/rap station which isn't my kind of music but I'll definitely listen in for a while for such a great cause.
After all of this excitement I got a call on Monday from Dr. Olshefski that CHOP (Children's Hosp of Philadelphia) had an opening for the MIBG treatment on May 2nd! If we wanted to take this spot we had to stop the current chemo immediately so of course we jumped at the opportunity. We drove to Philadelphia Tuesday for our consultation with Dr. Maris on Wednesday. It was a very long drive but we made and got a room at the Ronald McDonald House. It was our first experience with one and it was very cool. They had lots of train toys and a model train display set up so Jaret was loving it. This is another wonderful organization that makes this all bearable for the parents and fun for the kids!
The meeting with Dr. Maris was great. He treats many relapsed NB kids from all over the country so we are very grateful that Jaret is now one of them. He spent alot of time with us explaining different options available but he felt that the MIBG was the best first weapon to use. He offered us a lot of hope but also reiterated what we knew that there is no cure at this point. The idea is to treat it as a chronic condition and hope that there will be some new curative treatment that comes along. He believes that Jaret is a good candidate for the MIBG treatment because his disease has been responsive to treatment in the past especially the radiation therapy he got in 2003 and MIBG is a form of radiation. It is an injected form that targets the NB tumor cells so there are fewer side effects than chemo. His blood counts will drop so he will probably need blood and platelet transfusions and GCSF shots to boost his white cell production. Dr. Maris hopes to do this treatment again in about two months and from there hopefully find something that Jaret can do outpatient. It is possible that he could have a full response but we would still continue with some type of treatment because this disease is so likely to come back. He said that he knows we just want to wipe out the disease and get on with our life but this is our life now. I think we needed to hear that because we really need to think about how we are going do all of this with two other kids who have their own needs and all of the financial junk. I just have to remind myself of the alternative and I know it will all work itself out. I may add some links later that explain the treatment better than I can.
I think I have overloaded you with enough information for now. We will spend next week doing Jaret's scans - again! Hopefully he can make it to school for a day or so. My dad and I will drive back to Philly on Sunday, April 30th while Guy stays home with Jacob and Jackson. Hopefully we will come back home on May 5th and get ready for Jacob's 9th birthday on May 15th!
Thanks for checking in with us and have a great weekend!
Tina
Sunday, April 9, 2006 11:04 AM CDT
I hope everyone is having a great weekend. This weekend I am feeling much better than last. We have a plan in place and Jaret is feeling great! After many calls and emails with CHOP, Jaret's doctor called with the news. I have to say how grateful we are to have Dr. Olshefski overseeing Jaret's care since his diagnosis. Hopefully we can continue to have much of our future followup and treatments done here in Columbus. I called CHOP myself and Jaret has an appointment on Wednesday, April 19th with Dr. Maris! He is one of the leaders in treating and researching new therapies for neuroblastoma especially relapsed NB. I am very excited to meet him and get started on this MIBG treatment which will be sometime in May. In the mean time we will do one more round of the irinotecan and temazolomide chemo to hopefully hold him stable. The bone scan results were basically the same. The uptake may be a little less intense overall but you could definitely see more uptake in the hip area where he has had the pain. The bone marrow showed 50% disease on one side but nothing on the other. This number really doesn't mean a whole lot - he still has disease there and we need to get rid of it! The MIBG had to be rescheduled for this week so I will be very interested to see the results of it. So, tomorrow we will start round three of chemo. I am not looking forward to the daily battle of getting him to take the medicine but that's what mom's are for, right?
We have been taking advantage of Jaret feeling so well. The hip pain seems to be almost gone for the time being. I took him, Jacob and their cousin Jordan to Jacob's school for a spring carnival. They had a lot of fun playing games and eating sno-cones, popcorn and cotton candy - who wouldn't! Last night my sister invited Jacob and Jaret over for a sleepover with Jordan and her sister Jamie. It sounds like they had a great time making their own pizzas, watching movies and eating junk food (again!) Today, Guy took the boys to a Columbus Clippers baseball game. Jacob got free tickets at school for perfect attendance. Tomorrow we will be at Jaret's school to see him get an award for Super Effort. We thought we were going to miss it because we would be in Cincinnati getting the new chemo but they couldn't get it and so Columbus is filling the prescription which is great for us!
Also this week Guy, Jaret and I will be doing a taping for a radiothon for childhood cancer. I am extremely nervous but I couldn't say no when one of our favorite nurses asked us to participate. I hate hearing my voice on the answering machine so I think hearing it on the radio could send me over the edge! I will let everyone know when this will be on the air unless I am so bad that there is no amount of editing that could make me sound intelligible!
That's all the news for now. We have a busy few weeks ahead of us and hopefully we can enjoy the holiday. I hope everyone of you has a Happy Easter as well! Thanks for keeping Jaret in your thoughts!
Tina
Sunday, April 2, 2006 4:03 PM CDT
Finally an update! Sorry for the delay - I was hoping to have some definite plans in place to tell everyone about but that is not the case just yet. As of now, Children's Hospital of Philadelphia (CHOP) is saying that it looks like Jaret will qualify for the MIBG treatment but we haven't got a definite yes or a potential date. For now, Jaret finishes up his antibiotics tomorrow and we are doing all of the necessary rescanning. Last week he did the CT and next week is the MIBG and the bone scan. He also had bone marrow biopsies done Friday. I'm not expecting a huge change on the scans - in fact I will be surprised if his disease hasn't progressed. We were released from the hospital last Friday, March 24th and you could notice Jaret was favoring his left leg. By the weekend he could barely walk on it. I tried not to panic but I called the clinic a few times to make sure Jaret's doctor was aware of this and to see if there was any news from CHOP even though I knew he would call me as soon as he knew anything. I am very concerned that there will be a lengthy waiting list for treatment and Jaret just can't afford to wait. Hopefully we can get a firm date from CHOP by midweek and by then we will have the results from all of the scans. The CT scan didn't show anything in the abdomen so I hope the other scans show it to be clear as well. I want to knock on wood but this weekend the leg/hip pain seems to be more manageble and he is getting around much better.
Understandably, Jaret has been missing alot of school and he is getting a bit behind which worries me but his teacher is very understanding. I try to help him as much as I can but we don't usually manage to get alot done. If he will be out for an extended period we may need to get a tutor. Jacob had the week off for spring break and we had some nice weather too. I think Jacob was in dire need of a week off (and Mom too!) from all of the homework although his teacher sent some of his unfinished work home to complete. As for Jackson, he is growing like a weed - a very fat weed! He weighed 18 lbs, 3 oz. at his 4 month check up!!! That is more than his 15 month old cousin, Jamie! We had been getting her clothes as she grew out of them but we are going to have to start giving her Jackson's old clothes.
I am just trying to stay sane this weekend. I am not the most patient person in the world and I just hate not having a plan in place. Atleast the boys are enjoying themselves. Last night they went to a Monster Truck show with their Dad and Grandpa. They all had a great time. Today Guy took them to see Ice Age 2. I'm sure I will be hearing all about that. Meanwhile, Jackson and I have got to spend some quality (quiet) time together.
That's all for now. I will update as soon as there is more news. Please continue to keep Jaret in your thoughts and prayers. Feel free to sign the guestbook. It really helps me to read these messages from Jaret's supporters! Thanks for everything!
Tina
Wednesday, March 22, 2006 8:46 AM CST
Well, there is never a dull moment in the world of cancer treatment and Jaret is no exception. He was admitted to the hospital on Sunday evening because of fever. In the emergency room he spiked a temperature of 104.4! We ended up in the PICU for the night so that they could keep an eye on his temperature and blood pressure. He has been on the J5 Oncology floor since Monday. He had a fever Monday afternoon again and then last night. They have identified two bacterial infections. The doctors were surprised he wasn't still in the PICU but I guess we got him to the hospital early. I was not expecting Jaret to get this bad of an infection on the low dose chemo because his white count was still in the normal range, but his oncologist said this can happen when you've had as much treatment as Jaret has had. The infections Jaret has are from his own intestine - the chemo or the diahrrea can cause the lining to break down and the bacteria can then get into the body. They are still working out the antibiotic combination and dosage that will work for him and his kidneys. But it looks like he will be there for another day or two.
Yesterday at the hospital I started looking at how this infection has really effected Jaret's blood counts and so I had a feeling that this was going to change his treatment schedule. Not an hour later Dr. Weiss from Cincinnati called to tell me exactly that. He explained that since Jaret got this infection it just wasn't worth staying on this chemo if we did not know for sure that it was helping him. His bone scan had showed stable and the bone marrow aspirates were worse since starting chemo but that could just be the sample since neuroblastoma in the marrow is usually clustered. So we are going to pursue the MIBG treatment option again. Dr. Weiss spoke to someone at Children's Hospital of Philadelphia to ask if Jaret qualified for MIBG on a compassionate use basis since he couldn't get into a trial because of his borderline kidney function and they said he would qualify (yeah!). So Dr. Weiss and our oncologist here in Columbus are contacting them about starting this treatment as soon as possible. There is probably a waiting list and Jaret will have to recover a few weeks from this infection but hopefully this will happen sooner rather than later. I'm excited and scared but I think this is the best choice because MIBG has the potential to hit the cancer hard and knock it back and then we can hopefully try chemo again with minimal disease. There are of course no guarantees with any treatment but you just have to have faith and make the best decisions you can. Philadelphia is a leader in the field of neuroblastoma treatment and research so I know we will be in good hands if that is where we end up.
For now that's all (I can't handle any more!) and Jackson is crying and I need to head back to the hospital. My two older sisters from Chicago are visiting for the weekend and I'm very much looking forward to this as are the boys. Hopefully Jaret will be out of the hospital and can enjoy it. Although he is really having fun at the hospital - playing video games in bed, going to the playroom, eating junk food (can you say spoiled??) I will update again as soon as I can and hopefully we will be out of the hospital and I will know the new plan for Jaret. Thanks for checking in on us and please keep Jaret in your thoughts and prayers!
Tina
Sunday, March 5, 2006 9:09 PM CST
I finally have a few minutes to update. We'll see if Jaret lets me actually finish the whole entry. We have had a pretty good week here. Jaret was pretty much back to his old ornery self. He has managed to put back on the 2 pounds he had lost since starting treatment. Jacob and Jaret got to play outside for a long time today which was really good for them and allowed me to clean the house a bit without them tearing it up right behind me. The reason that Jaret is feeling so good is because we did not start the next round of chemo as planned last Monday. I thought all was good and his creatinine was down to an acceptable level but the docs in Cincinnati threw us a curve. After much debate, they decided to take Jaret off of the study -- BUT, they are going to let him continue taking the same drugs at the same dosage just off study. Dr. Weiss (in Cincinnati) has been really concerned about Jaret's creatinine jumping up every few days when he became a little dehydrated (from the 10 days of diahrrea!) So instead of giving fluids every time the creatinine went up, he wanted to be proactive and start giving fluids before the diahrrea started but the trial does not allow this. The doctor and I both feel that other than this Jaret did very well with the first round so we decided to stay on the oral formulation of the chemo. We could have done IV and he probably wouldn't have needed fluids but this would require a few hours daily in the clinic and I really don't want to do that if we can avoid it. I think we will set up for Jaret to get fluids on weekends and I can hook him up and he can get most of it while he sleeps. We will go back to Cincinnati tomorrow to start round two of chemo.
Since we are going off trial, we had to get Jaret rescanned. We did a bone scan Tuesday and it was stable but we really didn't expect a big change after one round. The bone scans usually take a while to clear. Dr. Weiss thinks the better indicator that the drugs are doing something is Jaret's pain level. He hasn't complained of pain since starting the first round! We also did a bone marrow aspirate and should get the results tomorrow. The biggest benefit for us in going off study is we can do most of our clinic visits in Columbus. Cincinnati will stay incolved in his treatment though which I think is great because more than likely he will need different treatment in the future.
The boys had a great visit last weekend with two of their aunts and four cousins from Indiana and Wisconsin. Jackson had the girls lined up to hold him - atleast until he threw up! Jacob and Jaret had so much fun with Alyssa, Cassidy, Tiffany and Braedon and I loved having some girls in the house for a change! Guy always loves seeing any of his sisters (he has four) because he doesn't get to see them enough but I think he has gotten used to the male majority in the house! Six females under one roof was a bit much for him at times but its good for him! Maybe we can make it to visit them later this year depending on what's going on with Jaret.
Well, I think that's all for now. I am anxious for Jaret to start on his chemo again so he can continue to kick this cancer's butt! I hope he feels well enough to enjoy the 60 degree weather next weekend! Thanks for checking in with us and have a great week!
Tina
Sunday, February 19, 2006 1:28 PM CST
Good Afternoon! Well, Jaret has made it through his first round of chemo on the new trial! He has a week off to recover and then round two should start Monday, February 27th. He did pretty well this round. Last weekend, after five days of both chemo drugs he was pretty wiped out. But, he started perking back up on Monday and now his appetite is picking back up too. We went to Cincinnati on Tuesday to see the doctor and get labs drawn. I then got a call on Wednesday from them saying Jaret's creatinine was slightly elevated. This measures his kidney function and so they really watch this number. He had started to have borderline diarrhea so this higher number could mean he was getting dehydrated. We then got to spend five hours at Children's Columbus getting fluids! But it wasn't all bad. Jaret tolerated the stay and IV leash very well and we got to see a lot of familiar faces up on J5 AND we didn't have to stay the night!
On Friday we had labs drawn again here in Columbus and his creatinine was back down. His blood counts overall were good and dropped only slightly with the chemo. Of course this makes me second guess whether this treatment is strong enough to get rid of any of the cancer. But he hasn't had anymore significant pain so I will reserve judgement for a few weeks when we redo scans. Yesterday, I noticed some blood in his stool (okay, maybe this is too much information!) so I called Cincinnati and they sent us to Columbus Children's again to redo labs and get a little fluid bolus while we waited for the results. The labs were even better than the day before so we got a quick ticket out of there! So far today he is eating a lot more and no diarrhea (I am knocking on wood!!) I hope this is a good week for Jaret to get back to his energetic playful self and driving me crazy again!
If getting Jaret situated on his new medication schedule and dealing with all of the side effects wasn't enough, Jackson is sick! The doctor said he had brochialitus (sp?). It's a virus that is worse in small babies (good thing Jackson isn't small - 16 pounds at 3 months!) He's really wheezy and congested so we are giving him breathing treatments to help. It will be amazing if Jacob can manage to stay healthy through all of this.
We are really looking forward to this weekend when two of Guy's sisters are coming to visit and atleast three cousins who the boys don't get to see nearly enough. Gina, Guy's twin sister, is coming in with her three kids (Alyssa, Cassidy and Braeden) from Wisconsin and she's picking up Mary in Indianapolis to visit for the weekend. I'm so glad that it looks like Jaret will be up to the visit (and all of the hugs and kisses that Aunt Mary will surely shower him with!)
Well thats all for now and I will update again soon. Thanks for checking in on us!
Tina
Thursday, February 9, 2006 2:01 PM CST
Well it has been a hectic few days. Jaret went from taking one medicine one week ago to now I think we are up to seven! I was totally preparing myself for a huge daily battle to get him to take all of these medicines but he has done great! He has learned to swallow the three daily capsules and he takes the oral chemo without even mixing it with juice! So far he hasn't had any nausea but has had a little diarrhea which could turn into a major problem so hopefully we can resolve that quickly. This made me a little nervous sending him to school but his teacher is aware of all of this and I know she will take excellent care of him as will all of his wonderful classmates! Today we had to have labs drawn here in Columbus and his counts are good for now. His white count has dropped a little but everything else is good. We go back to Cincinnati next Tuesday to get the rest of his chemo for this round.
The day before he started this chemo we were at my parent's house for the Superbowl and it was so scary to see how much pain Jaret was in. He didn't want to move his lower back or his left arm at all! Two days earlier he was fine. I was so anxious to get started on this treatment. Monday he was feeling better and so far this week he hasn't had much pain.
Well, I will update more later but hopefully things will stay calm with no major new problems. Thanks for checking in on Jaret and keeping him in your thoughts!
Tina
Wednesday, February 1, 2006 10:02 PM CST
Sorry for the delay in updating. I wanted to make sure we got the go ahead from the doctors today and that Jaret was definitely approved to start treatment on Monday. We will be starting a Phase I clinical trial with the chemo drugs irinotecan and temozolomide and the antibiotic cifixime (say that three times fast!) The doctors in Cincinnati felt this was the best option available for Jaret right now. There are some other treatments out there but many he can not get into because of his kidney function. I thought we would be able to do MIBG treatment which I felt was a more aggressive treatment but there are no trials open that he meets the required kidney function for. There are some trials that aren't accepting patients right now that he could potentially qualify for but he barely meets the kidney requirement and because of that the doctor in charge of the study probably wouldn't accept him anyway (this part really ticks me off!) We could still be able to do MIBG on a compassionate basis off study. The doctors in Cincinnati explained that the chemo trial requires high blood counts which Jaret has so we can do this now and hopefully get some good results and good quality of life. If the chemo is not working and his blood counts drop (from the chemo or more bone marrow disease) we could then pursue the possibility of MIBG which has lower blood count requirements. I know its all very confusing but they seem pretty optimistic about this treatment. The benefits of it are that he can take it orally (although this is NOT a benefit for me since I am going to have to get him to take it everyday!), his counts shouldn't go down too far and so he can remain in school. We have to go to Cincinnati on every Monday but its only about an hour and a half to the hospital from our house.
Jaret seems to be doing alright. He's missed alot of school with all of these tests so now he's not wanting to go but then as soon as he gets there he is fine. Tonight he is complaining about his back hurting and I know he has disease in his tailbone so we just need to get this chemo started Monday with no changes to the plan!
That's all for now. Jaret and I are going to go to bed!
Thanks for checking in on us and please keep Jaret in your thoughts and prayers!
Tina
Saturday, January 28, 2006 0:04 AM CST
Okay, well we are quickly coming up with a new gameplan. We cannot do the hu14.18/IL2 treatment because from what I understand the trial has been suspended due to concerns about toxicity. In addition to this news, the new scans this week showed quite a bit of disease progression from four weeks ago. It is also in his bone marrow. So, the new plan is that we are going to Cincinnati Childrens Medical Center on Tuesday to discuss treatment options there. They are one of 14 hospitals in the U.S. that are members of NANT which is focused on new treatments for neuroblastoma. Most of these trials are Phase I which is a little scary because they are still trying to determine the maximum doseage they can give without major side effects. I want to do an MIBG treatment which is like internal radiation (much more complicated so I will get an accurate description if this is the way we go). This is pretty aggressive but I think we have to hit it hard while his counts are up and his body is basically recovered from his previous treatments. This is all a gamble because we don't know if this will be effective against the disease in his body. So I am going to try to remain optimistic. We will listen to what the doctors in Cincinnati recommend and go from there. I hope we can continue to do followup care in Columbus because it has been so wonderful to us. Jaret feels comfortable there and he knows everyone and they all know and love him. They have been great at finding treatment options for Jaret and getting the ball rolling so we can start treatment as soon as possible. We have been very fortunate to be able to treat 15 minutes from home for this long and Cincinnati is only two hours away so it won't be too bad.
I will update again when I have details - hopefully Tuesday night. I want to thank everyone for there support. It is amazing! Jaret has definitely got some wonderful people pulling for him. We've received cards, calls and emails from his teachers, his classmates' parents, coworkers of our family, our family and friends and people I have never met. It is overwhelming! You will never know how much I appreciate your support. We are going to need it now more than ever! Thanks again! We love you!
Tina
Friday, January 20, 2006 9:52 AM CST
Well, after consulting with Jaret's doctor we decided on a treatment plan. It's all coming together very quickly. He will be admitted on January 30th to start this new treatment. We had a few options presented to us and we decided to go with a new clinical trial. It's very complicated and I know I would mess up if I tried to explain it but basically its an immune therapy that will try to boost Jaret's own immune system to fight off the cancer. It's officially called a Phase II Study of hu14.18-IL2 In Children with Recurrent or Refractory Neuroblastoma. The informed consent explains the study as:
"Hu14.18-IL2 is an experimental anticancer drug. It is an anticancer molecule created by linking 2 anticancer molecules together. The first part (hu14.18) is a new antibody found in mice that is able to react against human cancer. An antibody is a type of protein that helps protect the body from bacteria and disease. The hu14.18 antibody works by connecting to certain cancer cells which makes the body's own immune system destroy those cancer cells. The second part (IL-2 - interleukin-2), is a substance made by the human body. Usually, your own body makes small amounts of IL-2 to help in immune responses to infections. It is now possible to make IL-2 outside of the body and give humans much higher doses than their own body makes. IL-2 (given alone) is now a standard treatment for certain cancers. The hu14.18-IL2 molecule contains the hu14.18 antibody linked to IL2."
Like I said it's very complicated but this could be an amazing opportunity for Jaret. It is not chemotherapy which we want to avoid until (hopefully never) absolutely necessary. He had such a hard time before with losing his hearing and his kidneys failing and then all of the infections he got, the last of which resulted in emergency surgery to remove half of his left lung! This is still a trial though and it does have its own list of potential side effects. Only a few children have received this treatment with hu14.18-IL2. The common side effects are fever, chills, nausea, lowered blood pressure and fluid retention to name a few. Another probable side effect is pain while receiving the infusion. He will be inpatient for atleast four days so they can monitor him and hopefully lessen the side effects. He gets the drug for four hours per day for three consecutive days. The side effects are usually over within a few hours of the end of infusion but they could last a few days or even longer in rare cases. Despite all of these potential side effects and the fact that he will be the first to receive this treatment at Columbus Children's Hospital we still feel confident that it is the best option for Jaret at this time. I joked with his oncologist that Jaret would be either a pioneer or a guinea pig (he said a pioneer sounds much better and I agree!) Each cycle is 28 days and he could do this for a total of 10 cycles as long as his disease does not progress. We still have a few other options if this treatment doesn't work for him.
Next week we have to redo all of his scans so they have an accurate picture of where his disease is at the start of treatment and we are doing a bone marrow aspirate to see if there is any disease in the marrow. He also has to get a central line put in which he will not be happy about. I did manage to convince his oncologist that a port (under the skin) would be better than a broviac catheter which he had before. The broviac was two rubber tubes that hung out of his chest so he could be accessed without needles. Jaret is just way too active for that now. It would not have lasted two weeks the way he runs around here!
I broke the news to Jaret's teacher, Mrs. Pat, and she was very upset but supportive. Jaret and his five classmates are all so close that I know the kids will probably have questions. I told her to tell them what whe thought they could understand and to let the parents know so they could answer any questions. Pat said they will just work extra hard when he is in school. We'll see how the first round goes and maybe he will be up to doing a little school work while he's in the hospital. I don't want him to get too far behind if we can help it.
Well, that's all the news for now. Please keep checking back. I will update more often with his progress. Thanks so much for keeping Jaret in your thoughts! Please feel free to sign the guestbook.
Tina
Sunday, January 15, 2006 7:55 PM CST
Well, we didn't get the news we hoped for. Just as we feared, Jaret has relapsed. This is completely devastating but we've had a few weeks since we found out this was a possibility so now we are focusing on treatment. We meet with Jaret's oncologist on Tuesday and he will lay out some options for us. We have to decide how aggressive we want to be. The scans just show one area on his right arm - on the ulna bone at the elbow. It's very probable that there are more tumor cells in his body but not enough clustered to show on scans. The bone scan had a few inches of bone light up, but on the mibg scan it was only a very small spot. Originally, the radiologist read the scan as clear, but luckily Dr. Olshefski saw this spot and so now we can hopefully get a jump on the disease. I think we want to treat aggressively but still try to maintain some normalcy. My hope is that he can still attend school without too much interuption. He has only five other students in his class and his teacher and classmates are so wonderful, I think he could still keep up with the work. But, our priority of course is kicking this cancer in the butt before it has a chance to spread. As you would expect, the more the cancer comes back, the harder it is to fight.
I am trying to focus on the positives right now. First, I think we caught this disease about as soon as we could. It's only in one area and it could have come back in a much worse part of the body. He has had three years off from treatment and had a chance to really recover from chemo and radiation from the first time around. It was only in the last six months that his platelets returned to a normal level. Because of this break, he is stronger and he has many more options for treatment. The worst part of all of this is that he is older now and it is very difficult to explain things to him in sign language when its new territory for him. He is fine going in for scans and check ups, but I'm sure he doesn't remember the long hospital stays, the all day clinic visits, being tethered to an IV pole, and basically just feeling like crap from the treatment! How do I prepare him for this??? I'm hoping that his teacher can help me with this. But I am sure that he is not going to take it well. I know there will be some battles of wills. He can be the most stubborn child sometimes but maybe this will serve him well in fighting this - I can only hope.
Other than this kick in the pants, Jaret and the rest of us are doing well. Guy and I are trying to get ourselves prepared for this again - emotionally, physically and financially. Guy's employer (the City of Westerville) has always been wonderful throughout since Jaret's diagnosis. He was able to take time off when needed which was a huge weight off our shoulders. I have been working for a dental office for the past few years but had decided to leave after having Jackson. The plan was for me to stay home with Jackson and babysit my two beautiful nieces. What's the saying - the best laid plans... I have been pondering a career change to nursing but I have had trouble making the decision to just do it, because its a huge time and financial commitment to go back to school and basically I think I'm too old and it's too late. But my sister in law just graduated from nursing school this year and she's older than I am so I can't make that excuse. If only I could use my on the job nursing skills acquired while Jaret was being treated. For now this will have it remain a dream. Jaret and the boys have to come first!
Speaking of the boys - Jackson is now two months old but looks about six months old! He's getting huge! We have bets on when he's going to lap his one year old cousin, Jamie, in weight. Jacob is doing well also. His school work is improving which is a huge relief for me. His teacher had expressed concerns that he wasn't completing his assignments in the classroom because he was daydreaming. I am very proud that he has put in the effort to do better. Jaret is excelling in school as well. I still worry that he might not be able to keep up with his classmates especially now, but his teacher has wonderful things to say about him. She loves that he is asserting his independence (as I said, he's stubborn!) and his sense of humor. I can only imagine that at some point in his school career this may get him into a little trouble. He has had a little pain in the right arm but it just seems to bother him when he is trying to fall asleep and doesn't affect him at school or when he's playing. He still runs circles around all of us. Someone apparently forgot to tell him he's sick.
That's about all I can write tonight. Jackson is crying and it's his bath time. I will update again when we have a plan of action! Thanks for checking in on us and keeping Jaret in your thoughts!
Tina
Tuesday, December 27, 2005 6:34 PM CST
QUICK UPDATE - 1/09/06 Unfortunately we didn't get the clear results on scans that we hoped for. There is something on his right arm lighting up. At first the radiologists felt it was some kind of trauma. It is very strange to hope that your child has a broken arm but the alternative is too horrible to think about! Now they aren't so sure. We have a biopsy scheduled for Wednesday. They are going to take a few needle biopsies from his elbow. Hopefully I will know more by the weekend! I will update soon - I promise!!!
Today is an anniversary of sorts for us. It was four years ago today that Jaret was first admitted to the hospital not knowing how our lives would change. We first heard the word neuroblastoma in the emergency room at Children's Hospital. Although this awful disease turned our lives upside down, I know we are extremely lucky because we still have our little boy and many others with this disease have not been so blessed. We know that it could rear its ugly head at any time so we are grateful for today and hopeful for many more days like today.
I hope the 2005 holiday season is a happy one for everyone. We are definitely enjoying ourselves here! Our holiday season began a little early when we welcomed Jackson Thomas into the Cerino family on November 15th. He came into the world at a healthy 9 lb and 2 oz with a full head of long dark hair!! Jacob and Jaret are very excited to have a new baby in the house although some of this excitement has worn off! Jaret's teacher helped him pick a sign language name for Jackson. He also cracked up laughing telling everyone how Jackson peed all over him, daddy and Jacob. They are both really good with him but Jaret can be a little rough sometimes but all in the name of love! Jacob is big help to me with the baby. He will rock him and play with him but not so helpful with diaper duty - oh well, I'm pretty sure i didn't change my sister's diaper either.
Jacob and Jaret are both enjoying school. Jacob is a third grader at Darbydale Elementary and he is a member of student council this year! He was very excited about this but he's still not quite sure what his duties are. But we are proud of him all the same! Jaret is in the first grade at his new school Huy Elementary. He has the same teacher as last year and the same five classmates. This is so nice because they have become so close and all of them are such good friends. I dropped him off at school one morning and one of the girls in his class was getting off of the bus. She grabbed his hand and walked him into the building - it was so cute!
The holidays have been great so far as I mentioned.
Santa Claus was very good to the boys. And all of his aunts and grandparents were very good to them too! One might say they are spoiled!!! I am not sure where we are going to put all the new toys - which seem to grow in size as much as the boys do! We all enjoyed spending the holiday together. My sisters from Chicago came in for both Christmas and Jackson's birth so that was very nice.
Jacob and Jaret have been pretty healthy so far this school year. We also managed to schedule most of Jaret's scans during winter break so he only missed one full day of school. We have one more scan to go on Friday and we also see the doctor that day so I should have results updated on this entry over the weekend.
Guy and I are doing well also - just getting by on a little less sleep but that's to be expected. Guy will continue on second shift next year but with Sunday and Mondays off. I am going to be staying home with Jackson at least for the time being and I will also be watching my two nieces, one-year-old Jamie and four-year-old Jordan. It will be nice to have some more females in the house for a change. I told Jordan I was going to be playing with her hair and fixing it up everyday but I don't think she was too excited about this!
That's really about all that is happening in our neck of the woods. Jackson is crying so I will end this here and update when I have Jaret's scan results in a few days. I hope all of you are having a great holiday and have a happy and healthy New Year!
Go Bucks!
Tina
Saturday, July 30, 2005 10:45 PM CDT
Happy 6th Birthday Jaret!!!!!
I'll just start off by saying that no news is good news at least when it comes to my updates - or lack thereof!! We've actually had a lot going on here since I last wrote many moons ago... Jaret has has two sets of scans the last of which was this week. All is well on that front but more details about that later!
The end of the school year was very busy for Jacob and Jaret. We had both starting baseball. Jacob in his second year of coach pitch and Jaret playing his very first time in tee ball. I was a little concerned that his hearing loss would be a big problem but I soon learned that no one pays attention in tee ball anyway! He had so much fun especially when he got to play catcher! There is a picture in the photo album of him in his uniform! This fall we are going to venture into soccer! His Aunt Tara signed him up so that he and his best pal/cousin Jordan can play on the same team! This should be quite interesting since Jordan who's 4 years old is very protective of her older cousin. We think she may start telling off some of the other players if they take the ball from Jaret!
Also during this time, Jaret graduated!! They had a very neat kindergarten graduation with the kids dressed up and looking very serious. There wasn't a dry eye in the house when they showed the slideshow with pictures taken during the year. Jaret's fan club took up two rows! It was very cool but very sad! He will go on to first grade at the elementary school next year (with fifth graders no less!!) A.G. Bell is such a wonderful school with amazing teachers and we will miss them all. However, Jaret will get to keep his same teacher, Mrs. Pat, for first grade so that is a big help with the transition - probably more for my benefit that Jaret's. Jacob will be a big third grader which I can hardly believe. He turned eight in May and he's growing very tall. He is a big Cincinnati Reds fan just like his Uncle Brett so they along with Guy went to a game a few weeks ago - just for the guys (no mom or Jaret allowed!) Science seems to be what really interests Jacob these days especially recently the Space Shuttle. For Jaret's birthday we went to COSI which has many cool science exhibits and a Titanic display. He talked our ears off retelling everything we saw!
Back to Jaret's scan results. Everything was great. MIBG scan and CT scan was clear and the only thing on the bone scan was the same area on his skull as usual where he had surgery and the radiologists remarked that it was slightly smaller!!! We have been fairly sure this shows up because of the surgery and that it is still healing but it is wonderful to hear that it is indeed getting smaller. I got a bit of a surprise from Jaret's oncologist. He actually said the words "no evidence of disease" and then added "that we can see." I know he thinks there may still be some cancer cells somewhere in his body but it was still a shock to hear. He even suggested going to a 6 month scan schedule instead of every 3 months only if I felt comfortable. It's a little scary but I know we have to do it sometime! This is all great news of course and hopefully I can rest easy and enjoy the reprieve! We will definitely need this reprieve because we are going to have another baby!!!! I am about five months along and due November 22 on my mom's birthday (I won't say how old!) We had put off having more kids because of all we were going through with Jaret but finally we felt that if we were going to have another it needed to be sooner rather than later. I do not want to be pregnant at 40 and the boys are getting older and we didn't want too much age difference. Of course I would love to have a girl but it is just not my luck. We are having another boy! Jacob is especially happy about this. I try to look at the bright side - weddings will be cheaper and I think boys get easier the older they get (atleast that's what I have been telling myself so don't spoil this for me if I am totally wrong!!)
I hope that everyone (who hasn't given up on me updating this webpage again) is doing well and having a good summer. It's going by so quickly that I can hardly believe the boys will be back in school in a month and we will have a bouncing, crying bundle of joy in less than four months! I'm off to sleep now - I guess I better get it while I can!
Love,
Tina
Sunday, March 20, 2005 2:47 PM CST
FINALLY! Yes, I am not going to let another month pass by without updating Jaret's family, friends and fans! All I can say is that in the world of neuroblastoma - no news is usually good news! Jaret saw his doctor last week for the first time this year and basically all of his blood counts and urine tests remain good! He goes once a month for these and we see the doctor every three months. We just had our six month check up with his nephrologist to check on his kidneys and blood pressure. Everything continues to look good there too! He just kept Jaret on blood pressure medicine to keep it down and we will keep a close eye as he grows because his kidneys may not grow with him! I guess at some point more dialysis and possibly a kidney transplant would be options. Definitely not something I'm going to worry about now! We are currently gearing up for the next round of scans in April. He will miss almost a whole week of school - his first absences all school year!
Basically since Christmas we have been trying to get back into a routine in the new house. Guy switched back to second shift for the year and he actually has a weekend day off now so we have Friday and Saturday nights together. This is new for us but thankfully this house is a little bigger so we can still get away from each other if we need to! I am very excited that spring is here and hopefully the weather will be moving on to warmer temperatures -- soon! I can't wait to start planting and creating our new yard! Although if this ends up like the inside of the house I'll be afraid to make that first hole in the yard - I have not put one speck of paint or hung one picture yet!
We are looking forward to Easter next weekend. My sisters are coming in from Chicago and we will spend the weekend at my parent's house. We usually have a nice Easter egg hunt outside where we manage to lose atleast one egg until summer! We will also be cleaning the last bit of stuff out of Tracy's old house. This is the house that we used to live in. It looks like it finally sold! Yeah!
Jaret and Jacob have both been doing pretty well in school. Jacob's teacher tells me he's talking more in class and not being so quiet. This is what she been trying to get out of him - if only that meant he was more quiet at home but we can't all win! Jaret is becoming more and more comfortable. His teacher says he sometimes finishes his work before some of the other kids and he will help them finish theirs and she sees him joking around with the other kids - "just like a normal kid", she said. We keep hoping and praying that he can continue to be a regular kid! On that note, I signed both boys up for baseball this summer. This is Jacob's third year and he will play coach pitch again. This will be Jaret's first year in TBall. I'm a little nervous about how the other kids will act around him. Besides our family, the only hearing kids he's been around tend to not know what to do around him. They're not mean at all but they usually stare at his cochlear implant. The CI processor that he's worn for a year is in a harness on his back with a wire going to his earpiece. It's kind of bulky so we just last week we switched to an ear-level processor. It just looks like a large hearing aid with a small wire attached to the magnet on his head. He has about 12 colored covers that he can choose from so that's pretty cool for him.
That's really about all we are up to here. Even though we have been almost two full years since any active treatment we still worry that we will be back in that boat. Any time Jaret has a bad couple of days where he just is being difficult or he's really tired, I think could this be it. I don't want to miss any symptoms but I also can't read the worst into everything so I usually try to stay somewhere in the middle. I recently read about a neuroblastoma child who was in remission for eight years and his mom still worried when he had unexplained fevers. I just hope that as each year goes by that I can get just a little bit of piece of mind back. Only time will tell...
I really promise to update more often and my next will be about the middle of April when we hear the results of this round of tests. Thanks for checking in on Jaret and Happy Easter to all of you and your families!
Tina
Monday, December 27, 2004 10:47 PM CST
HAPPY HOLIDAYS!!!!
It has been so long since my last journal update and for that I apologize. My sisters - all of whom are in town for Christmas - are even asking me when I'm going to write another update. My only excuse is I'm always exhausted after the kids are finally both in bed or maybe I've just been a little lazy!
First off, I vowed that today I had to write a journal entry because it is a very special day. Some people may think it is not a day to celebrate but not me. It was three years ago today that we made our first trip to Children's Hospital unaware of the seriousness of Jaret's health. We also first heard the word neuroblastoma. It was the first time I found out there was a tumor growing in his belly when the ER doctor asked me how long this mass had been there. We spent our first of many many nights on J5 (oncology unit). Jaret had his first CT scan of now the dozens that he has had - he's a real pro now except when it comes to drinking that nasty contrast!! And it was three years ago today that we last took many of things in our life for granted - things like going to work everyday, family and friends, our children's health and mostly life. It seemed so unfair that my child was no longer guaranteed his life. I now knew that he may never go to school, have his own friends, drive a car, get married, have kids, ... It has taken even longer for me to realize that this is not guaranteed for anyone. So this is why I celebrate today. I have two amazing (if not a little rambunctious and impatient and not always the most polite) young boys. They can be very creative, sensitive and sweet and then turn around and try to pile drive each other into the floor but they are Guy's kids too.
Just in time for this anniversary Jaret just completed scans. I didn't get the written report yet but the gist of it was there was nothing new - yeah! I asked Dr. Olshefski a few weeks ago if he thought that Jaret still had some undetectable disease in his body and he felt that he did. But the good news is that his body has been off chemo for two years and radiation for 1 1/2 years and he has had a chance to recover. If Jaret had some disease progression he would qualify for most studies and have the most treatment options available. We will file that under the "good news we hope we never have to use" heading! Dr. Olshefski also said we could go to three month physicals and just get blood and urine checked every month. This means shorter clinic visits - yeah!
I feel like I need to find some wood to knock on but Jaret has not missed one day of school this year! I attended his Holiday party last week and it is just amazing to see the difference in him. He interacts more with his classmates and really seems to no longer be the outsider. He sat right on Santa's lap and signed quite a few toys he wanted - a train was at the top of his list, of course. Santa granted this request with a few different train toys.
I don't want to leave Jacob out. He is enjoying school as well. His teacher said is right on track with his reading level and math seems to be the only time his attention wanes. She did say she wished he would talk more in class (you will never hear me say this!). She thinks he is very creative and wants him to share more with the class. They had a poetry reading just before break and he was so nervous and did not want to go to school that day but he did and seemed pretty happy with his performance. Guy got to see it but I was at the hospital with Jaret doing scans. I hate missing these things! Just before Christmas Jacob lost one of his top teeth - finally. I told him that I thought the Tooth Fairy might take a vacation for Christmas so he had better get it out before then. It was out 10 minutes later!
We have had a very busy few months in our family. Just about a month ago we moved into our new house. We are very excited to finally have our own home. The boys love it here. They have their own rooms that we are slowly decorating. Jacob is getting help from his Uncle Brett with a Cincinnati Reds theme and Jaret is going with the (surprise!) train theme. We have a lot of work to do moving the rest of our things from the other house and from storage but with Christmas over we should be able to finish up. It would, however, have been much easier without all of this snow and ice on the ground!
The other exciting news is that we have a new baby in the family - not mine. My sister Tara had another beautiful baby girl. Her name is Jamie Noel Unger and she will be two weeks old tomorrow. There is a picture of her in the photo page with Jacob holding her. He just loves her and wants to hold her all the time. Jaret on the other hand will not touch her. He will look at her and seems fairly interested but if you try and get him to kiss her or touch her hand he runs away like she has the plague (or maybe cooties?) Jamie has a wonderful big sister, Jordan, who will take really good care of her and teach her how to handle the big boys!
I know I am forgetting something but I can't think of what right now. Guy and I are doing well. He has been working some overtime and special duty to put some money away for the house. I am still working for a dentist 30-35 hours a week. I hope to find something else closer to home before Guy goes back to second shift next month. Basically we are just spending time with the boys and by the looks of our Christmas tree and my parent's tree, we are spoiling them rotten!
I hope all of you had a wonderful holiday season and I hope the new year brings happiness and health to each one of you. Thanks for checking in on us and for being so patient with my lack of updates. I promise not to wait so long again. If you get a chance, please sign the guestbook!
Go Bucks!!
Tina
Sunday, October 24, 2004 11:18 AM CDT
Happy Autumn everyone!
I know once again I am way overdue for an update. Its just been a little hectic here with school and work and a 5 year old who doesn't seem to need much sleep! In addition to all of that we are trying to get ready to move into our new house in early December and staying at my parents in the meantime - with dial up internet no less! This kind of hectic is good though. I can't complain about once a month clinic visits and weekly speech therapy.
I won't keep everyone waiting for the good news... We finally got the results back from LA on Jaret's bone marrow- all clear!!!! We are all thrilled about this BUT we can't get too overjoyed because bone marrow aspirates are just tiny samples from the larger sea of bone marrow (but, YEAH!!!). Dr. Olshefski said he was about ready to get on a plane to LA to get the results himself! They had one woman at Children's calling the hospital out in LA once a week to bug them about the tests and apparently the guy was getting a little annoyed and had the gall to say to her, "Why is this so important?!" He's lucky I was not the one on the phone with him!!! Regardless of this one person's lack of care and urgency, we are ecstatic that for whatever reason they performed the test and the results were clear. We also did a full body bone scan and a head CT to repeat tests done in August. The prior scans showed the same area on Jaret's skull light up but it was more distinct than before. The hospital has new cameras and that was thought to be the reason but we rescanned just to be sure. The new scan results were basically the same so this seems to support the theory that this is not new disease but healing bone. Can we hear another "YEAH!" My guess is they will scan him again after the first of the year but I haven't heard officially. So for now we will stay with no treatment and visit the clinic for blood counts and urine tests once a month.
The kids are both enjoying school and fall field trips and getting ready for Halloween. Jacob is going to be a police officer and Jaret is going as a Power Ranger (the red one). I didn't think he ever watched this show but he puts on his costume and starts doing karate moves.
We are also anxiously awaiting the birth of my sister's baby. She is due in December and Jacob is especially excited - probably more excited than Jordan is about becoming a big sister! I'm not sure Jaret understands what's going to happen! So this should be a great Christmas with a new baby nephew or niece and a new house and good scan results behind us for now!
I think that's all for now. I hope everyone has a Happy Halloween and I will update soon (I promise!) Thanks for checking in on us!
Tina
Go Bucks!!!!!!!!1
Wednesday, September 15, 2004 12:48 AM CDT
Hello everyone!
I bet everyone is as happy as I am to have the kids back to school. Jacob and Jaret were starting to drive me crazy! Some may say I'm already there but that's another story! Jacob was actually happy to start second grade and to tell all of his friends about our house getting broken into (great!). I had to warn his teacher so she knew what had happened if she heard him. She seems very nice and Jacob so far is behaving himself. Jaret has started kindergarten in the same school he attended last year. He is with the same class which I am very grateful for and he seems to like his new teacher. We are still staying with my parents. Jacob just hasn't wanted to stay at our house since the break in so I promised him that I wouldn't make him. We should get to move into our new house in November so its not too long. I think mom and dad can stand us for two more months!
We went to King's Island before school started and everyone had a great time. Jacob was tall enough for most of the roller coasters and he even rode the Beast. Jaret had to stick to the kiddie rides but he still had fun riding them with his cousin Jordan. They have a small roller coaster called the Beastie that he could ride so we all rode it together. Jaret was so hilarious. As soon as he sat down and they buckled him in, he put his arms straight up in the air like they do on the big coasters! Evidently fear is not a factor for either of them - sorry, I couldn't resist. I am a big fan of Fear Factor! I posted some new pictures from the trip in the photo album.
When I last wrote we were anxiously awaiting bone marrow test results from Los Angelos. Well, we are still waiting...and I am not too happy about it. I guess the hospital there agreed to test it before it was sent. As far as I know they are still going to do it but since Jaret is not on their study it is not a priority for them to test it. Jaret has been off the clinical trial since his kidneys failed and he lost his hearing. He basically still followed the protocol except for a few rounds of chemo and then he didn't have the transplant. It just seems that he is being punished for something that's not his fault. For everything that he has survived the past two and a half years it doesn't seem fair. We have stopped all treatment because we think that his bone marrow is clear but if it isn't we need to be doing something. This disease can spread very quickly at any time but two months later Jaret's bone marrow sample is still sitting somewhere in LA and we are still waiting... His bone scan is still lighting up on his skull where he had the biopsy and is probably healing bone, however it is more distinct this time. They seem fairly certain this is because the hospital has new, better cameras and not because his disease is progressing. But, to be sure, we are scanning him again in about a month just to be on the safe side.
So I think that is about all the news here. I hope everyone else is doing well and staying safe. Thank you for checking in on all of us and keeping Jaret in your prayers!
Tina
Saturday, August 14, 2004 10:11 PM CDT
Hello Everyone! Thanks for checking in on us!
It has been a crazy rollercoaster of a month in the Cerino house! We got back from Chicago three weeks ago. I attended a Neuroblastoma conference. It was a wonderful experience where the Children's Neuroblastoma Cancer Foundation brings families together to meet and share stories. Then we get to hear top NB doctors speak about new treatments, long term side effects and emotional effects that NB has on the family. Jacob and Jaret stayed with my sisters until the conference was over and then met me downtown to spent an afternoon at Navy Pier. We got to spend a few days with my sisters and they had a party at Chuck E Cheese for Jaret and Jordan's birthday. Guy came up separately and took the boys to Wisconsin to visit his sisters there for a few days. The boys have gotten so close to their cousins in the past few years.
So we got back from Chicago to prepare for Jaret's 5th birthday. We planned a party for Jaret (his birthday is July 30) and Jordan (she turned three on July 15) on Saturday, July 31. Friday night we had the scare of our lives (outside of cancer, that is!) Guy worked a special duty job for a few hours from 11:30 pm to 2 am. He regularly works third shift so the boys and I are used to being alone. I went to sleep at 2:30 am knowing Guy would be home soon. I awoke out of a deep sleep to hear someone yelling right outside my window that someone was after him and help me. He banged on the window and then on the front door. I grabbed the phone and Jaret out of the chair and pulled him into the hallway. I woke up Jacob and got him in the hall. I thought someone was going to start shooting through the windows so I got them away from the windows. Then this guy starts banging on the sliding glass door and it shatters. I got the kids in the bathroom and locked the door and called 911. I knew Guy should be home anytime but I really thought he would hurt us if he found us. It sounded like he was knocking over dressers in every room. Anyway, Guy came home in the middle of this and saw the broken glass and blood on the floor and did not see us so he thought the worst. He finds the guy in the kid's toy room on the floor with a closet door on him. Guy grabs the phone to call 911 and then realizes that I am on the phone and we were all ok. He held him at gunpoint until the police arrived (I should say that Guy is a police officer for those who don't know) So needless to say I was (still am) a nervous wreck and Jacob is still really scared. Jaret didn't seem to know what happened since he couldn't hear anything and we never saw the guy (Thank God!) We are staying with my parent's right now. The house was a mess. There was blood all over the walls and carpet and worst of all on the kid's toys! We replaced the doors and we are getting new carpet this week. We will probably try to get back there in a week. We found out that this guy is our neighbor but we didn't know him. He was on some drugs and hallucinating that people were after him. Two days and $45 later he is out of jail - pretty sad huh? Enough of that bad news!
Ironically we had signed a contract to build a new house before we went to Chicago and found out we were approved four days after all of this happened. So we are even more excited now. The house should be done in November.
On to some more good news. Jaret had a full run of tests - scans and bone marrow biopsies. So far everything is clear!!! We are awaiting results of his bone scan and there was a sample of bone marrow sent to LA for more sophisticated testing. Keep your fingers crossed!
We went ahead and had the birthday party for Jaret and Jordan. They really made out! Both of them got cars!! Jordan got a VW Beetle Barbie powerwheels and Jaret got a little John Deere tractor. Let me just say that I have never received a car from my parents. I got one new bike when I was five and the rest were hand-me-downs. This just doesn't seem fair! Alright, enough whining from me!
Now we are getting ready for the start of school. I am very excited for this even if the kids are not. We are planning a final trip to King's Island next week. We took the kids last year and they really enjoyed themselves. My mom and dad and Tara, Brett and Jordan are also going. Tara is five months pregnant so she will have to stick to the merry go round this year. Speaking of amusement park rides, we are hoping that this roller coaster of a month is over and we have some boring uneventful months ahead!
Please keep Jaret in your thoughts as we wait for the remaining test results. Some good thoughts for Jacob as well hoping that he is okay and can overcome some of his fears when we return home. Thanks for checking in on us and I hope that all is well for all of you.
Tina
Tuesday, July 20, 2004 9:19 AM CDT
Hello Everyone!
I know, I know - again way too long between updates! We had another computer virus and now I am in Chicago visiting my sisters but I had to let everyone know the latest. I hope everyone's summer is going great! Ours started off a little shaky but its going well now. Not a week after school let out, Jaret got pink eye. It got pretty nasty very quickly but it cleared up after a few days with some eye drops. Then, not a week after that he broke his collarbone! The ER doctor said it would take three months to completely heal and so I thought the summer was doomed. Jaret would not wear the sling and trying to tell a four year old to settle down is like talking to a wall! He wanted to ride his brother's scooter and go swimming as soon as we got home from the hospital! But after a few days you could barely tell his arm was bothering him. I should have known what a tough guy he is!
Up until this week, our schedule has been very hectic. Jacob had summer school in the morning to help him in reading. Then he had baseball twice a week and with all of the rain, sometimes he had to play 3 games in a weekend. This was a bit much for 7 year olds so they all got a little burned out. Jaret also had summer speech with his school therapist and tutoring with his preschool teacher, Tricia. If I haven't said it before, she is the best teacher! Each year Jaret's school gets a grant to provide tutoring in the summer to some students and Tricia signed up especially to tutor Jaret! The sessions really helped him stay on top of things so he will be ready for kindergarten.
We did manage to squeeze in some fun on the July Fourth weekend. Tara and I took the kids to her workplace to watch the fireworks downtown. We had a great view without the crowds! The next day my sisters, brother-in-law, grandma and all the kids went to the Cincinnati Reds-Cleveland Indians game. This was Jaret's first pro baseball game and he did pretty well. Of course he wasn't all that interested in the game but he loved the fireworks after the homeruns and as always, the concessions! His favorite was the blue "ice cream." He kept signing this and I could not find any blue ice cream and then he pointed out the cotton candy to me - duh! There's a great picture of him on the photo page eating his ice cream! The next day we went to see the Lion King show downtown. My sisters and I went along with our parents and grandma and Jacob. Jacob thought it was going to be boring but he loved it (though I don't think he would admit that now!) Before the show we went out to dinner at Buca di Beppo (I'm sure I spelled that wrong!!) where we got to eat in the kitchen. This was really cool because they only have one table there and they brought every dish by our table and explained what it was.
Saturday Tara and I and our three kids left for Chicago to visit our other two sisters here. We went to Chuck E Cheese to celebrate Jaret and Jordan's birthdays - lots of fun as you can imagine. Guy drove up yesterday and took Jacob and Jaret to Wisconsin to visit his family up there. So I am enjoying a few days of peace and quiet (should I feel guilty?) At the end on the week I am going to downtown Chicago to attend a conference on neuroblastoma. They have quite a few NB experts coming to talk about different things like possible new treatments, long term side effects and palliative care to families affected by this monster. This is a great opportunity so I can't wait!
So after that crazy first half of summer we are looking forward to some relaxation before school starts again. Somehow I don't think we will get it. When we get back from Chicago we have Jaret and Jordan's birthday party at home. We haven't even shopped yet for gifts or for party supplies. It's hard to believe that Jaret will be five years old! It's definitely a huge day for him but he doesn't even realize why. I know its a good thing that he just wants to be a regular kid, follow his big brother around and annoy him - just like all of us did!
On the medical front, we have some preliminary good news! I try not to get too excited. Jaret had bone marrow aspirates taken a few weeks ago. The results came back "no evidence of disease." Another sample was sent to Los Angelos. They can detect smaller amounts of disease so we are still waiting to hear those results. The last sample taken in February from his skull biopsy showed there was neuroblastoma cells present so we hope we're headed in the right direction. When we return from Chicago, Jaret has all of his scans scheduled. We are doing a CT scan, bone scan and MIBG scan. So I hope all of you will continue to keep Jaret in your thoughts and prayers as we have these scans. From our observations Jaret is doing great! He is definitely getting stronger. He is riding his bike (with training wheels) faster and doing really well in the swimming pool. The other day Jacob went with us to the hospital and he wanted to walk up the stairs in the parking garage rather than take the elevator. I was amazed walking behind Jaret that he walked up five flights of stairs stagger stepped. He used to take a step and his feet would meet and then another. Stronger is definitely better for whatever comes next for him!
That's all I have for now. I will update again when we get more results. I hope that the rest of the summer brings fun, sun and relaxation to all of you. Thanks for checking in on us and keeping Jaret in your thoughts.
Tina
Monday, June 7, 2004 11:31 PM CDT
Well, once again I have let too much time pass between updates. But, I'm sure everyone can relate to how busy this time of year is. The kids finished school last week and so we are all trying to adjust our schedules to summer time. I always remember summer being fun and relaxing as a kid. Now it's just more work! Jaret starts summer tutoring tomorrow with his preschool teacher. He will be very excited to have the teacher all to himself! In two weeks he will begin summer speech with his speech pathologist from school for two days a week. This is in addition to the weekly speech he gets at the hospital. Jacob isn't getting off easy this summer either. He is going to get some extra reading help through the school. He is not too thrilled about this but I think he will benefit (and maybe even like it a little) from having more one on one attention. I had to make myself a color-coded schedule with a color for Jaret's appointments and one for Jacob's and a different color for all of the hospital appointments. And I am still trying to work about 25-30 hours a week!
Anyway, both kids did well in school. Jaret's teacher had nothing but wonderful things to say about how he has progressed this year. She moved him on to kindergarten with his classmates so we were very excited about that. He does fine with the academics but we have to work on expanding his communication skills so he can express himself more. Jacob will be a second grader next year. He improved through the year and his biggest obstacle has been paying attention in class! He gets bored very easily.
Jacob turned 7 years old last month which makes me just old! He got lots of presents including a new bike. Jaret also got one. Jacob and his Yankees have only played a few baseball games this year. Most have been rained out so now our weekends have become as busy as the weekdays trying to make all of these games up. He is doing better this year but he's still not that into it. The other team could score 30 runs and he will ask if we won. Oh well, so he won't be the next Cal Ripken! Atleast he's having fun! Both Jaret and Jacob have started spending a lot of time in Grandma and Grandpa's swimming pool. Grandpa put a slide in for them last year so as you can imagine they are loving that! We've had the pool since I was 11 years old and we never got a slide! I guess that tells you how the grandkids rate!
On to medical news... There have been no changes in Jaret's treatment plan - yet. He is on his 11th round of Accutane and scans are planned for July/August. On July 7, he will be having bone marrow aspirates/biopsies taken. This will be an outpatient surgery procedure. I am anxious to hear if the bone marrow has improved or not. Depending on this news and the scan results, we will re-evaluate the treatment plan then. We also are going back to the nephrologist this week to get Jaret's high blood pressure in check.
At the end of July, my sister Tara and I (and the kids) are going to Chicago to visit with our other two sisters and to go to a Neuroblastoma Conference. This is geared toward parents/caregivers to give them information and resources to better deal with this disease at every stage. There will be several doctors there who specialize in Neuroblastoma presenting different themes to us. I think this will be extremely valuable when it comes time to make new treatment decisions.
Please take a few minutes to visit www.alexslemonade.com Alex is a beautiful young lady who has been fighting NB since right before her first birthday. She wanted to do something to help other kids with cancer so she started selling lemonade. She has a goal in 2004 to raise one million dollars and she is well on her way to doing this. On June 12 there will be lemonade stands held in all 50 states! Check out the website for more details and there is also a book about the amazing Alex for sale. Anyone on my gift list should expect one!
Thanks for checking in on us and please take a moment to sign the guest book. Wishing everyong a safe and happy (and not TOO busy) summer!
Tina
Tuesday, May 11, 2004 9:42 PM CDT
Hello to everyone and Happy (belated) Mother's Day! I had my best Mother's Day yet! At 7:30 in the morning Jacob insisted on making me breakfast! I tried to get him to make me some toast and orange juice but he wanted to cook something so I supervised him while he made french toast. All I did was add the milk and he did everything else. Well, I did have to clean up the mess later but it was still very sweet and pretty tasty! He also gave me a card and magnetic picture frame he made in school. Jaret made a cast of his hand in the sign of "I love you" at school. It was the coolest idea and Jaret was very proud of it and not quite willing to give it to me! Guy also bought me a really nice ornament with charms and a locket and a book and CD. We then went to my parent's house and spent the day with the kids outside enjoying the weather!
We are hoping for equally nice weather this weekend. Jacob's 7th birthday is Saturday! He's very excited. He even offered to help me shop for him - nice try! Aunts Teresa and Tracy are flying in for the special day and to see him play baseball. All the kids love seeing them. They usually come bearing gifts and ready and willing to make each of them feel special! Jacob wanted an Army themed party. He's really into camouflage and tanks so we are going all out! His only other request was to go bowling so we will try to fit that in too!
On the medical front, there is really nothing new. We are continuing with the same plan of attack - Jaret is on his tenth round of Accutane. We will be scheduling his MIBG scan in July and Dr. Olshefski wants to get Jaret scheduled in the O.R. in June to do bone marrow aspirates. I'm very anxious to see these results because as of the last round of tests, this was the only place showing disease. His blood counts continue to be good. His platelets are still below normal (but rising) after over a year since radiation and chemo. The last few months Jaret's blood pressure readings have been high so we are going back to see the nephrologist. Jaret had extremely high blood pressure at diagnosis and was on several different medicines. Gradually it came down and he hasn't been on any BP medicine for about a year. We know his kidneys are in bad shape so that could be causing it or it might be the medicine he's on or something else. So we shall see.
Jaret's had a fun couple of weeks at school. Last week the whole school went to a farm and got to see turkeys, horses, pigs and some of Old MacDonald's other furry friends. Today I went to the zoo with his class. It was only for two hours but we saw a lot including the new baby elephant! It was so hot and the kids were exhausted and Jaret was especially cranky. It was a good thing we had a lot of parents there because by the time we had to leave every adult was carrying a child! I can't believe it's almost June! I'm a little sad that school will be ending soon. Jaret has had such a great year with a wonderful group of kids and an awesome teacher! They have all taught him so much. Tricia, his teacher, had told me earlier in the year that Jaret may have to repeat Preschool 2. His language was so far behind everyone else that she just wasn't sure if he would be ready for kindergarten. But I am happy to report he will be a kindergartner next year - yeah! There were a few days I thought this would never happen! He still may have to repeat kindergarten but we will cross that bridge when we get to it! Academically he does fine, he just needs to catch up on the language. We are hoping to take advantage of some tutoring and extra speech therapy that the school is trying to put together for the summer. It will be alot of shuttling around the city but it will definitely be worth it. Maybe we can squeeze in a trip to Chicago and Wisconsin to visit all the Aunts this summer.
Other than all of that, its been pretty boring around here. I'm still trying to get my eight hours of uninterrupted sleep....well, maybe next time!
Thanks for checking up on us!
Tina
Sunday, April 25, 2004 12:22 AM CDT
It seems I start every journal entry the same - apologizing for taking so long to update everyone. Time seems to be flying by these days. I'm not sure if that's a good thing or not! School will be out in five weeks and I am definitely not ready for that. I am now working five days a week and Guy and I really haven't sat down and figured out how we are going to manage this summer. We had better get busy! I hate the feeling of always needing to be somewhere and then rushing to get there. I'm either rushing to get Jacob to Cub Scouts or baseball or to the bus in the morning. I told Guy he owed me a good night's sleep - 8 hours uninterrupted!! So far he hasn't delivered! These are like normal family problems that I'm sure everyone can relate to. So I am just going to be happy that we can have this normalcy and learn to live with a little sleep deprivation!
We had a lot of fun on Easter. We spent the day at my parent's house. Guy was able to spend a few hours with us and then he had to go home and take nap before work that night. At least one of us is getting some sleep! All of my sisters were there. Teresa and Tracy flew in from Chicago and entertained the kids quite well. They even got roped into having a sleepover with Jacob, Jaret and Jordan. We had an egg hunt outside for the kids and somehow every year me manage to lose one egg. All of the kids had a special present that they had to find with clues hidden in the eggs. Jaret and Jordan found theirs in the house but Jacob's was a little more difficult. He had to dig his present up in my parent's garden. My mom, Teresa and Tracy thought they were so smart. They buried his present a foot or so down and marked it with an "x." It should have been very easy but it took them 20 minutes to find it!
Jaret has been very busy at school. The whole school went to the circus and they have trips planned for a farm and the zoo. I volunteered for the upcoming trips so I'm very excited. We had a visit with Jaret's oncologist a few weeks ago and the plan is to stay the course we're on. He will continue with the accutane for now and then we will repeat the MIBG scan in June along with a CT scan and bone marrow biopsy. He's been feeling pretty good lately. He enjoys going to Jacob Cub Scout meetings and they are so funny together there. Jacob plays the doting big brother and takes care of Jaret. They have had some speakers talk about fishing and the outdoors. The kids all sit on the floor to listen. Jaret sits by Jacob and whenever he sees someone raise his hand to ask a question, Jaret's hand goes up too. Jacob then takes his hand and pulls it down. If only they were this sweet all the time...
Jacob started baseball practice a few weeks ago. He is a Yankee this year and his Uncle Brett, the die-hard Reds fan, is not very happy about this! He moved up from Tball to coach pitch so he was excited about that. His birthday is next month. I can't believe he will be seven! We are trying to plan a party but he keeps changing his mind about what he wants. On Friday, he rode his bike for the first time which was very exciting. He was content for the longest time to keep the training wheels and he was so worried about falling but he just got on and I held on for a few feet and off he went. Now he's riding like a pro!
I think that's about it for now. I hope everyone out there is doing well and having a nice Spring. Thanks for checking up on us and if you can take a few minutes to sign the guestbook.
Tina
Tuesday, March 30, 2004 10:13 PM CST
Well contrary to what you may have thought, we did not fall off the face of the earth! We have been without internet for over a month and updates were a little difficult. But, we are up and running now and if I knew the computer repair would only cost $35 I would have taken it there a month ago!
Now on to more important news. Its been a very busy month here. Jaret had his very first MIBG scan on March 17. This was much easier than the week of scans that we have done in the past. We were doing this scan to see if he has any measurable disease on this particular scan to determine if he is eligible for a clinical trial in Michigan. We know that he has a small amount of cancer in the bone marrow but this scan will show solid tumors in his bone and tissue. Well for the first time in two years he had a clean scan! This isn't as good of news as it should be because now he is not eligible for the study in Michigan that may have a very good chance at clearing him of all disease including his marrow. I have just tried to take it for the good news that it should be and remain optimistic! We visit with our oncologist Friday and we will see what plan B is. Currently Jaret just completed his eighth round of accutane and he goes to the clinic once a month for checkups so I definitely can't complain, atleast not right now.
The other exciting news is that Jaret got his cochlear implant hooked up last week. I really was expecting the worst so that I wouldn't be disappointed. It's been two years since he heard anything so it can be very frightening but it went very well. The audiologist first hooked him up to her computer so she could start testing all of the electrodes implanted in his ear. Everything looked good. Jaret was busy playing and all of a sudden he looked up and signed "on" and "listen" and he had this half smile on his face. It was by far the coolest thing I have ever seen and for anyone who comes to my house I will bore you with the videotape! Today we had our second mapping session where they just fine tune everything and then we just keep bumping things up gradually for him. To get a bit of an idea how its helping him, without any aid his hearing is at about 130-140 decibels (basically he may hear a jet plane if it landed in the back yard!) On the first day with the cochlear it got him to 80 decibels and today we got some response in the 50-60 db range. Normal speech is about 40 db so he's getting there. It will still take a lot of time because even though he's hearing sound he can't distinguish what he's hearing. And he hasn't heard speech in two years so we have to be patient - something I'm not very good at even though I have had a lot of practice!
Last week Jaret's school had a parent breakfast. It was a lot of fun to sit down and eat with his teacher and classmates. The classes all put on little plays showing progressive stories. Jaret's class did "The Old Lady Who Swallowed a Fly." Jaret was a cat. He had to go up on stage and say (in sign language) "Good morning, my name is Jaret. I am a cat." He of course did an excellent job. One thing I can say is that going through what he's gone through has given him alot of confidence and guts. It's amazing to me that a 4 year old can walk in front of a hundred adults and do his thing with no fear! I couldn't do that now! And again for anyone who comes to my house I will again bore you with video - although the plays were all very adorable!
On to other news and other children. Jacob managed to steal the illness spotlight from Jaret for a week. He had scarlet fever! I honestly didn't think people got that anymore. I'm so bad because Guy took him to the doctor and I didn't believe him at first! I'm saying are you sure he said scarlet fever?? All I could think of was Little House on the Prairie - didn't someone on there get it? But apparently it is still around and treated pretty successfully with antibiotics. So Jaret was also put on antibiotics for precaution. I really should have bought stock in the company who manufactures augmentin because this is about the 10th round this winter! The pediatrician is feeling sorry for us and giving us samples! All is well now and both boys have been good for a few weeks (knock on wood!) Jacob starts coach pitch baseball next week so he's very excited for that.
I think I will end this for now. I have about 200 emails to catch up on.
Thanks for checking in on us. Please take a minute to sign the guestbook. I love reading these!
Tina
Saturday, March 6, 2004 7:31 PM CST
Hello everyone! Sorry its been so long since my last update! I have been without internet for two weeks and its been driving me crazy! Jaret's cochlear implant surgery was February 23 and it went very well. We stayed the night in the hospital just as a precaution. They gave him antibiotics to prevent infection and some fluids. It was actually kind of nice because we got to see some of our old doctors and nurses. The surgeon was able to implant all of the electrodes so that he will get the best quality sound. We don't get the outside part until March 23 so I am very anxious for that! He was off school for a week and a half to let the incision heal. The doctor wanted him to take it easy at home but that was a joke! He was more hyper because he wasn't at school! We had a play date with one of his classmates who had the same surgery four days earlier. They had so much fun and her mom and I were able to get more acquainted and compare notes on the surgery.
Jaret had an appointment with his oncologist yesterday. He talked a little more about our plan. Basically we are going to do an MIBG scan in two weeks and go from there. If the scan is negative then he is not eligilble for the MIBG treatment in Michigan. If any areas light up or if his skull lights up in same area that he had the biopsy then he will send the scans to Michigan and let them make a decision. I'm not sure what to hope for. I would love to hear his scan was clean but I really want to be able to do this study. We know there is cancer in the bone marrow and that he will need more treatment to get rid of this. The MIBG seems a better option than more chemo. We will just wait and see and then go from there. Right now Jaret is doing very well. His counts are great!
Well I am going to end this now and pray that my mom's computer doesn't kick me off the internet before I get to add this! Thanks for checking in on us!
Have a good weekend!
Tina
Sunday, February 22, 2004 12:10 AM CST
Hey everyone! Just a quick note to keep you all up to date on the latest news.
After an anxious week of waiting since hearing the disappointing biopsy results, I spoke on the phone to Dr. Olshefski Thursday. One thing they have ruled out is a stem cell transplant. This is because of Jaret's low kidney function. He said there have been kids across the country that have proceeded with transplant with poor functioning kidneys and just not done very well. Many of them not making it through the transplant process. For transplant they have to receive higher doses of chemo than ever before and too often their bodies just can't take any more toxins. One therapy he did look into is called MIBG. MIBG is a radioactive compound that in small doses is used in scanning and classifying neuroblastoma. Most NB kids regularly use this type of scan to measure theri disease. In high doses, MIBG can target the NB tumor cells and shrink them. It has shown a lot of promise but the long term success is still unknown.
When Dr. Olshefski first mentioned this to me I really thought that Jaret would be immediately denied this option because of his kidneys so I did not have my hopes pinned on this. I thought we would be back on chemo within weeks and back to the daily grind of hospital stays and clinic visits. However I was pleasantly surprised when he told me that currently Jaret's kidneys would not prevent him from consideration. He would have to have stored stem cells which we do (though I'm not sure where they are!) and he would have to have measurable disease on an MIBG scan. This we do not know because Jaret has never had an MIBG scan. About 10 percent of people are MIBG negative and the MIBG compound does not bind to their tumor. **I feel the need to add a medical disclaimer that it is possible that I have no idea what I am talking about!!** We are planning to do a scan within the next month so we will be able to answer this question. We know the cancer is in his bone marrow, but on the scans Jaret normally does the only spot showing up was on his skull where they just biopsied and removed the bone and tissue. So I am very interested to see how he scans on the MIBG. For now we will stay on the accutane and reevaluate once this scan is done. The treatment would be done at the University n Michigan of all places! I hope they don't hold it against us that we are die-hard Buckeye fans! There are only three other places in the country that do this type of treatment so there is a bit of a waiting list. If we move forward with this it would not happen until atleast the summer.
Tomorrow is Jaret's cochlear implant surgery. I am very excited but it will be a little anticlimactic because he doesn't get the outside apparatus for another month. They will implant electrodes into his ear along with a magnet. The outside piece also has a magnet that will hold it in the correct place. Its kind of weird and I'm sure metal detectors will be interesting from now on! Anyway that's all for know! I will update everyone after Jaret's surgery to let you know how it went!
Thanks for checking up on us and keeping us in your thoughts! Please take a few moments to sign to the guestbook - we look forward to reading these!
Tina
Wednesday, February 11, 2004 12:50 AM CST
Well we received the biopsy results from Jaret's bone and tissue samples and unfortunately we didn't get the good news that we had hoped for. The bone that was taken was healing (old disease) as the surgeon thought. The tissue underneath the bone showed tumor cells. We have a follow up with the surgeon tomorrow and I need to check with him as to whether he took all of this tissue out. That wouldn't be so bad BUT apparently they also had bone marrow to test (I think from the bone they took out) and it showed positive for tumor cells.
This was definitely devastating news to hear since we thought we had conquered that mountain. It took Jaret 10 rounds of chemo before we got a clear bone marrow result! The bone marrow testing can be a little like fishing. Its very possible that his bone marrow was never clear and just the samples we got were clear. The pathologists estimated that less than 5 percent of his bone marrow was tumor so hopefully we found out early enough to take care of it - for good!
Dr. Olshefski (Jaret's oncologist) put him back on accutane which he took for 6 months ending in November. He thought this may have been keeping the disease in check. Accutane is actually manufactured as an acne drug but it has shown success maturing neuroblastoma cells. Jaret takes it in much higher doses than acne patients do and it can have some major side effects like brain swelling and kidney problems. Jaret did very well with it before though and just had very dry skin and it seemed to effect his blood counts a little.
Dr. Olshefski is making some phone calls and getting some options together. Hopefully we will have some good options. There are a lot of experimental therapies out there it just depends on if he meets the requirements. The biggest thing going against him is his kidney function (about 35). We had tried about a year and half ago to go to New York to participate in a clinical trial that really seems promising for minimal bone marrow disease but he was not eligible due to his kidneys. So please keep Jaret in your thoughts and prayers and hope that we come up with some promising therapies to try. If anyone has any suggestions, ideas or anything at all we welcome any input! You can leave it in the guestbook or email us privately - Thank you!
We are still going ahead with the cochlear implant surgery scheduled for the 23rd. I will update when I have more information.
Thanks for keeping Jaret in your thoughts!
Tina
Friday, February 6, 2004 10:40 PM CST
Hello to all of Jaret's friends and family!
Sorry that I did not update sooner on Jaret's surgery. He did great during surgery and so far the news is good (but we will keep our fingers crossed!)
We had to be at the hospital ready for surgery at 6 am Wednesday. I thought we would have to wait awhile before he went to surgery but soon after we checked in we went to have an MRI so they could map his skull. This involved sticking about ten discs (they kind of looked like life savers) all over his head. They failed to mention to me that they would have to shave spots of hair so these would stick. I even offered to cut his hair before that day but was told that the doctor only will shave exactly what needed shaved. I really didn't care about the hair but he looked a little silly. After they stuck the life saver things on his head, they drew cicles around them with a sharpie just in case any fell off. All of this was done so that the MRI could create a map of his skull in regards to the area needing the biopsy and the surgeon would then know exactly where to work. After they finished their doodling on his head he was put to sleep. He was fairly content up to this point - he fussed a little about putting a gown on and then sat perfectly still while this strange nurse came at him with a disposible razor shaving his hard earned hair and then sat quietly while she drew on him. All bets were off however when they came at him with the mask to put him to sleep but he was off to la-la land within a few minutes. He went from MRI to CT and then right to surgery. The neurosurgeon, Dr. Kosnik, came to see us before the surgery and said that on the MRI, the bone that lit up appeared to be healing bone which would be great news. I was told the surgery would be 2-3 hours but it was over in less than one! He said the bone area did look like old disease that was healing. Also the dura (I'm sure that's not the correct spelling, but its the protective covering over the brain) had some scar tissue. So the consensus - after conferring with Jaret's oncologist - is that it did not look like there was any active disease but Dr. Kosnik took the abnormal area of bone out anyway which was about the size of a silver dollar. The biopsy results will be back early next week so we will keep our fingers crossed until then. Whatever it is or was, it is now gone! This area of Jaret's skull had been lighting up on bone and tissue scans since diagnosis but through radiation and chemo the area had reduced considerably. As we have learned scar tissue or anything that increases blood flow will cause scans to light up. He has an area on his ribcage where he had a chest tube that always lights up and when his 6 year molar came in this area also lit up. Anyway that is my radiology lesson for today (hopefully like calculus and physics you will never need to use this information!)
Jaret had a little nausea after surgery but compared with what he looked like after previous surgeries he looked pretty good. Or as good as a four year old can look with a gauze turban (and I forgot the camera!) We only stayed one night in the hospital and were released late Thursday. We were a little taken back when we saw the incision for the first time. I thought maybe there would be a two inch cut - try FOUR Inches and 15 stitches! I put a picture on the photo page. It looks really bad but he is doing great! He has a little bit of swelling above his right eye and between his eyes. But its only Friday and he is already running through the house and climbing like a monkey. He is not supposed to have any rough play for a week but you can't tell a four year old that! It's going to be a long week!
Before all of this hospital stuff, Jaret went to his first birthday party for one of his classmates last weekend. It was really cool because all the kids are deaf so we (ok, I watched) signed "Happy Birthday to you." All of these parents are much better signers than I am. Two parents are deaf and the others have been signing for a few years so I felt very self conscious signing anything but it made me realize I need to practice more! And they were all very nice to me understanding that I am just learning!
Jacob gets to go to a birthday party Saturday for a GIRL in his class. This is the same girl who was calling him 2-3 times a week a while back. But they are "just friends" according to Jacob!
As if I didn't spend enough time in hospitals, I had to take my dad to the emergency room today. He fell on the ice and broke his wrist. But I was really glad to help since I called his house at 8am and he had fallen at 6:30 and he was just sitting in pain waiting for my mom to get home! He fractured it in two places and they had to put a plaster splint on - twice! As the doctor was on the bed putting all his weight on dad's wrist "reducing" the swelling and getting the bone set right, I told dad (who's pain went from 6 to 9 real quick) to think about all Jaret has been through. I'm pretty sure that it still hurt like heck!
I think its past my bedtime so I will end this. I will update again when I get the results of the biopsy and then we will get ready for his cochlear implant surgery in two short weeks! I'm thinking he won't be as cooperative this time around but we will see!
Thanks for stopping by to check on Jaret. Please take a few moments to sign the guestbook!
Tina
Thursday, January 15, 2004 10:48 PM CST
Hello to Everyone!
A belated Happy New Year to you all! I am getting really bad about updating Jaret's page. My goal is to update once a week or once every two weeks at most. My only (lame) excuse is that I like to write when the kids are asleep so I can write complete sentences and stay sane. And, anymore I am so tired that once they are out I'm not far behind.
Anyway, things are going well here and after months of trying to get the ball rolling (for surgery approval, biopsies, test results....), things are now moving and fast approaching and I now I feel like the ball is going to roll right over top of me! We FINALLY got a surgery date for Jaret's cochlear implant - Feb. 23 - after waiting almost five months for insurance approval that apparently we did not need?!? Grrrrrrrrrr! I am very excited to get this done and see how he does with it. I'm afraid he is going to hate it and not want to wear it like he did (and still does) with his hearing aids. I wanted this surgery done two years age when he first lost his hearing but they said no, not until his medical status improved.
On top of that great news, we are also moving ahead on the biopsy of his head. Jaret and I met with Dr. Kosnik (a neurosurgeon) who compared his head CT from August to present and the area had improved but Dr. Olshefski (Jaret's oncologist) still wants a biopsy because we need to know what it is before we decide what if anything to do next - so this is a good thing as Martha Stewart would say! I didn't realize, however, that this is a surgery. The area in question is about the size of a quarter (my unofficial estimate) and it is bone and little bit of tissue underneath. If Dr. Kosnik gets in there and sees that this looks suspicious, he will go ahead and remove that section of bone and replace it with something that will regrow into bone. I know this sounds very scary but he assured me that it was a relatively simple 2-3 hour procedure. We have to keep in mind that he regularly does brain surgery so his definition of simple and my definition of simple are probably not the same! I have heard really good things about this doctor. One of my sister's coworkers said "he was right below God" so I guess that's about a good a recommendation as there is! This surgery is scheduled for February 4th so I am a little worried that the two surgeries are so close but I am sure Jaret will bounce back quickly! Now I just have to manage to keep Jaret from getting yet another ear infection!
In other non-cancer related news, the boys are both doing well in school. I just can't wait until coloring is out of Jacob's school curriculum. This child is the worst colorer (ok, that's probably not a word, but he's a first-grader!) He gets atleast two or three comments a week from the teacher on his papers - "Messy." I have tried to get him to take his time and be neat but my efforts have failed miserably. I even resorted to showing him his 4 year old brother's coloring which is much better than his own and he only said to me proudly, "Jaret's a good colorer!" (see that's where I got that word!) Jacob actually can draw very well so he is a bit of an artist - he just has to be motivated. He can draw excellent tornados complete with flying cows and houses and when his Uncle Brett put a pitchfork through his toe he drew a very hilarious picture of this. Oh well,I'm sure Einstein was not a good colorer either so I think there is hope for him!
Jaret is loving school now. Since those few weeks last fall when he was having some separation anxiety when it was time to go to school, things have steadily gotten better. I no longer have to hide in closets at school so he doesn't see me! I took him to school after his dr. appointment last week and he was running down the hall as his classmates were running toward him and they hugged when they met - it was so sweet! There are only seven kids in the class and they are all getting very close. His teacher is the BEST too. She does the most creative things with the kids, it is so awesome! When I was there last week they had made a cave in hallway! They cook once a week and she is always sending home books that the kids have made with pictures of themselves. These are the best and I know it is something I will keep forever!
Jaret's bloodcounts at his last appointment were excellent!
Hemeglobin (red bl cells carry oxygen to the body) - 12.5
Platelets (form clots) - 84,000
White count (fight infection) - 7.2
These are all in the normal range except for the platelets where normal is over 150,000.
I think that is enough for now and hopefully I will update sooner next time.
Thanks for checking in on us and don't forget to sign the guestbook!
Tina
Saturday, December 27, 2003 12:15 AM CST
Hello to all of our Friends and Family!
I hope everyone is having a wonderful holiday! I am sorry it has been so long since I last updated but I am sure everyone can relate to how hectic the holidays can be. Today is kind of a special day for us and a date we will forever remember. It was two years ago today that we took Jaret to Children's Hospital for the first time and we heard the word neuroblastoma. A week of tests confirmed this initial diagnosis. Regardless of whatever outcome the disease brings, our family's life seems it will forever be in two parts - before NB and after NB. Even though this was a horrible day, I feel we should celebrate it because we have had two years of watching Jaret grow into an intelligent, fun and stubborn little boy with a laugh and a smile that can melt anyone. We also still have hope that he will have a long, happy and healthy life ahead of him.
Jacob and Jaret are enjoying their Christmas but it got off to a rocky start. First Jaret got another ear infection. He doesn't let me know or start complaining until it gets really bad. I guess he has a high tolerance for pain now?? But twice this year two different doctors told me he had about the worst ear infection they had ever seen! So Jaret missed school on Thursday and then school was cancelled for Jacob on Thursday and Friday due to the bus shootings in the area. We are all hoping that they catch this person soon. It was scary enough already but now they are aiming at buses and one of the alleged shootings was about a mile from our house at an intersection that we travel every day. Jacob missed his Holiday party and their program that they had been working hard on. His teacher called a few days ago and said they were going to do all of this when school started again in January. It was so funny when I told Jacob his teacher was on the phone and wanted to talk to him. He got this scared look on his face and whispered, "I don't want to talk to her!" He did get on the phone finally and spoke very softly answering her questions. Guy and I took Jaret to school on Friday so he could go to his Christmas party. Jaret rides a Southwestern bus but attends a Columbus Public school so they still had school. The party was a lot of fun. The principal read a story to the kids, they played games, ate cookies and each child sat on Santa's lap! There's a new picture of this on the photo page.
Santa was very good to them. Jaret of course got lots of trains and Jacob got some cool spy gear and a kaoraoke/CD player. They got matching Army outfits and a few games to share (most of the time they forget the "share" part!) The weekend before Christmas, two of Guy's sisters and their families came to visit. His twin sister Gina and her family came from Wisconsin and Mary's family came from Indianapolis. Jaret and Jacob had so much fun playing with their cousins. Jacob got to spend the night with them at their hotel and both of the boys got to go swimming in the hotel pool. A special thank you to Uncle Terry who was nice enough to get into the pool so Jaret could get in. Jaret would jump in, walk to the steps, get out and jump in again - he did this about 50 times! Gina treated me to a massage and a pedicure which I highly recommend to every mom! We are so happy that so many of Guy's family were able to come to Columbus and visit with us and Guy's dad. Hopefully next year we will get to visit all of them again!
On Christmas Eve my sisters drove in from Chicago. Jacob went over to help my mom get the house ready and apparently he was actually helpful (surprise, surprise!) Jaret went to my dad's office Christmas party and when I went to pick him up two hours later he was running around like he owned the place! This gave me a few hours to do some wrapping so I wouldn't have to stay up all night - again! I am the biggest procrastinator! This could be one of my New Year's resolutions or maybe not! My sisters were very generous with the boys although I think there was a competition to see who could buy toys with the most parts and the most noise! The boys have really loved having them here and we will all miss them when they leave Sunday. I know they will also miss Jacob, Jaret and Jordan but atleast for a few days they will enjoy the tranquility of no flutes, drums, remote control cars or ear-piercing screams!
I had a very nice surprise the day after Christmas. My very best friend from high school, Corrine, who I just got back in touch with this year was in town. We went to lunch with her friend and her family and had a great time catching up. She lives in Phoenix now so I am hoping to visit them next year - preferably when it's winter here and 60 degrees there!
Jaret's Smile quilt is done. This is a website that has pages for sick kids. Each page is made especially for the child. Jaret's is on page 8 (you have to go to page 7 before you can see page 8) www.smilequilts.com/jaret.html The link is also at the bottom of the page.
Next up for Jaret is a biopsy of the spot on his skull that is still lighting up. Hopefully it is not active tissue but if it is we will continue with some type of treatment. I seem to be getting somewhere with his cochlear implant surgery. The woman helping me from the doctor's office said she just has to talk to a nurse case manager at the insurance company and she has already started looking for dates at Children's O.R.! I am very excited to get this done and see how it helps his hearing - although it will not be immediate results but something he will have to work very hard at.
Thank you all for visiting Jaret's page and checking up on his progress! We hope everyone has a great holiday and a happy and healthy 2004! Please take a few minutes to sign the guestbook - I look forward to reading these everyday!
Sincerely,
Tina
***New photos added!***
Friday, December 5, 2003 11:42 PM CST
Hello Everyone!
I hope everyone had as wonderful a Thanksgiving as we did. Ours was a very relaxing day spent at my parent's house with the kids and my sisters. Unfortunately, Guy had to work but it sounds like the Police Department didn't let them go hungry. I believe Guy said he had three helpings! It's a good thing there were no foot chases that day or it could have been ugly!
Well, we finished our three month set of scans on Wednesday and saw Dr. Olshefski (Jaret's wonderful oncologist) today to go over the results. In August there was one small spot on his skull. This spot is still there but it may be a bit smaller and there are no new spots on any of the scans - which is the best news of all! We were given three options. The first would be to do nothing and repeat the scans in three months. The second would be to treat with more accutane which is the drug he took for the last six months. This is not chemo but a derivative of vitamin a that's intended for treatment of acne. It's been proven effective with neuroblastoma but there are potential serious side effects. The NB kids get extremely high doses and it can be harmful to kidneys. Jaret's kidneys are only working at about 30-40 percent so the doctor is not recommending this option since it may not help his cancer and it could do permanent damage to his kidneys. So we have decided to choose door number three. We would do another scan - either CT or MRI - of his head. Then we would consult with a neurosurgeon to do a biopsy of the area on the skull. I'm very happy that the doctor and I agree that this is the way to go. I just want to be absolutely sure this is active NB before we do anymore treatment. This will probably be done after the first of the year so we can now concentrate on enjoying the holidays! (Yeah!!!)
So now we have to get moving on preparing for Christmas! I had to get through these last three weeks of hospital visits, scans and worrying about results. Guy starting shopping for the boys tonight. We usually take a day and shop together but it always ends up in a fight because we can never agree on what to get them. I just gave a few suggestions and he did pretty good - there were a few things I didn't like but I'm am not going to stress about it. I'm sure Jacob and Jaret will love everything they get and after a week some things will never be played with again and Jacob will complain that he didn't get everything he asked for (can you say spoiled?) If I tell Jacob that I don't have money for something he says "go to the bank and get some" - why didn't I think of that? I'm going to have start the "money doesn't grow on trees" speech.
I am sure everyone had heard about the highway shooter here in Columbus. It strange to think that this area a few miles from my house is making national news. I am not really worried because I only drive this way once in a great while. I was more concerned about Jaret because the newspapers reported one of the shootings was right down the road where his bus travels every day but they have since taken that one off the list. It makes you realize how much we take our safety for granted. You can't imagine some lunatic just shooting at random targets for kicks!
I added a link at the bottom to Jamie's website (www.warriors.beebo.info). Jamie is from the United Kingdom and has neuroblastoma also. His mom, Kelly, put this website together for him and added a page for other NB kids. There are links to websites and photos of over 70 kids from around the world - some in remission, some still fighting and some who have lost their battle. Check out Jaret's picture along with his fellow warriors!
I am still waiting to hear about the status of Jaret's cochlear implant surgery. The information was sent to the insurance company seven weeks ago and I haven't heard anything. Today I decided to call and after 30 minutes of getting transferred and put on hold I talked with someone who said they have no record of receiving the request!!!!! I left a message with the doctor's assistant so I will hopefully get this straightened out Monday. If they tell me they have to resend everything and wait another 6-8 weeks I will either have to cry or bite someone's head off! Normally I really am a very calm and patient person. I will just have to wait until Monday and I am sure it is all going to work out (or else) :-)
Thanks for checking in on us and I hope everyone has a safe and happy holiday!
Tina
Saturday, November 22, 2003 9:46 PM CST
Hello Everyone!
First I have to say HAPPY BIRTHDAY MOM! I won't give away her age but Jacob guessed she was 24! I wonder how old he thinks I am - maybe 18?? Only in my dreams!
I hope this finds everyone well as Thanksgiving approaches! I know our family has so much to be thankful for especially that Jaret is thriving more than we could have imagined a year ago. November 20 marks one year since Jaret finished his last round of chemo (Yea!) We hope that it is his very last ever but we can never say for sure. We just hope for him to continue to regain his energy and healthy blood counts like he has been. Also last year on the night before Thanksgiving we ended up in the hospital for what we thought was the routine fever that inevitibly followed every cycle of chemo. However, this turned into an un-routine 6 1/2 week stay for a bacterial infection and then a fungal infection in his lung that had to be surgically removed. We waited 3 weeks for his counts to go up and when they didn't Jaret had emergency surgery to remove 1/2 of his left lung including the fungal ball (yuck!). Christmas and New Years were spent in ICU with another infection and slow recovering lungs (NOT a very Merry Christmas!) This was our second longest stay since Jaret's diagnosis. We had a 9 1/2 week stay at Hotel Children's back in Feb/Mar/Apr 2002 when Jaret's kidneys failed and he was on daily dialysis for 7 weeks. I recently counted that we spent 210 days inpatient at the hospital from Dec. 27, 2001 until Jan. 10, 2003. However, for anyone counting it has been 316 straight days without staying overnight there (Everyone find some wood to knock on now!) Of course, we have still spent countless hours at the clinic for doctor visits, labs and transfusions so we haven't been totally free! But we are definitely counting our blessings this Thanksgiving! I just hope and pray that everyone has an enjoyable holiday and especially Jaret and Jacob since last year was so difficult. Last year we convinced Jacob that Santa was coming later to our house after Jaret came home. It wasn't so terrible last year, Santa did visit the hospital and gave Jaret a cool Thomas the Tank Engine train set (how did he know?). On Christmas morning when Guy was with Jaret, Andy Groom (from the OSU Buckeyes) and his dad visited patients and gave Jaret an autographed picture. How cool is that? Except I didn't get to meet him and I am the huge buckeye fan! I also missed Brutus and the Blue Jackets players when they came.
Speaking of the Buckeyes, I am so bummed that they lost to that team up north today. I really thought they had a chance to win but 10-2 is still pretty good and we will be rooting for them in whatever bowl game they go to. My sister Tara was all ready to buy her ticket to New Orleans but there is always next year...
The kids are doing super in school! Jacob has been doing great with his reading. He just needs a confidence boost every so often. He also got a good listener award this week which is a big deal for him! Jaret is doing well too. He writes his name well and he is signing more. He knows all of the name signs of his classmates and he has been reading small books that they make at school. His teacher takes pictures of all the kids and makes them into books with simple repetitive sentences that the kids love. When Jaret sees his picture he starts dancing and rolling around on the floor! Grandma, Aunt Tara and Great Grandma got quite a kick out of watching him read his book to them. I am so proud of him and excited to see what else he will learn! I love the school and the teachers. They do so many exciting things. Besides the field trip they took to the farm, they cook once a week. They made apple pies this week - yes, regular size made-with-love apple pies that they got to bring home. We are saving ours for Thanksgiving! Apple is Aunt Tara's favorite but she seemed a little worried when I said Jaret made her apple pie :-)
I feel like I am being really long winded tonight so I will wrap this up. Jaret has had two scans so far and has two more to go. We had the Heme Renal scan that looks at his kidney function and a CT scan. I am always glad to get the CT out of the way because Jaret has to have a tube put up his nose to get the contrast in his belly. This is a nasty tasting liquid that they mix with Hawaiian Punch but apparently it doesn't help. I have yet to convince Jaret to drink this so we have to put the tube in but I will keep trying until I find a way! On Tuesday 11/25 we have the bone scan and then Dec 1-3 we have the Octriodide scan which looks at organs and soft tissue. I haven't got any results yet, I would rather have the whole picture when we are done! Please keep Jaret in your thoughts and pray for clean scans or if we can't get that at least hope that there are no new spots.
There was a message in the guestbook from a lady for Smile Quilts. I signed Jaret up for this today. They make a quilt on a webpage that is designed especially for each child based on their family and what there favorite things are. I will put the webpage link at the bottom and let you know when Jaret's is up and running.
Happy Turkey Day to all of you and remember all that you have to be thankful for!
Tina
Sunday, November 9, 2003 9:00 PM CST
Hello Everyone!
Sorry it has taken me so long to update - it been a busy week and a half. Halloween was a lot of fun for the boys! Jaret finally got to wear his Thomas the Tank Engine costume from last year. I was a little worried at first because he would not put it on and he started crying. This is how last year's trick or treat started! We went to our neighbor's house and he really got into it after he realized he got candy. My sister Tracy (who came in from Chicago) and I took Jaret and my niece Jordan out. Jacob went with a few friends and my sister Tara (Jordan's mommy) stayed at the house and passed out candy. It's a good thing I had Jordan because Jaret wanted nothing to do with me! He would not let go of Tracy's hand.
I volunteered for both of the boys' school parties on Friday. Jaret's was in the morning and they had the whole school in the gym which is about 60 students. They sang and signed some songs and danced which Jaret was really getting into. After he saw me he got a little clingy. They had their faces painted and they decorated cookies. Jaret seemed to know it was time for me to leave because he made me sit by him and hold his hand. I went out to recess with them and one of his classmates asked me in sign language if I was going to play too so I asked if he wanted me to and he said yes - so how could I resist? I ended up leaving while Jaret was swinging and his teacher said he was a very big boy and didn't cry! I am going to try and volunteer more so he is used to me being there. I helped with Jacob's party in the afternoon. They did a parade around the school and played Halloween bingo and got way too many treats, of course.
I had to pick the fish background for the website because Jaret is on a Finding Nemo kick. He can sit and watch this movie three times a day yet when we took him to the theater he couldn't stay in one seat for five minutes!
The only other news is that I started a new job. After a year and a half of being a stay-at-home (and a take-to-the-doctor, or to-the-clinic, or take-in-for-scans) mom, I am going to work two days a week at a dentist's office. My dad put in a good word for me (thanks dad!) and they hired me. This is kind of ironic because I am not fond of going to dentists myself but I guess as long as I can send other people in to get teeth extracted and crowns made and root canals done! I try to stay in the front of the office out of the drill's way! But they are really nice and they are willing to be flexible when I have appointments with Jaret. In addition to me being a working girl Guy has been working a bunch of overtime this past week so we haven't seen each other a whole lot so if any of you see him tell him I miss him :-)
As far as the plans for Jaret, we are STILL waiting for dates for scans. They are supposed to be this week but apparently they are having trouble getting them scheduled. I may have to call the doctor because if we need to do more treatment of any kind we should do it as soon as possible.
Saturday I attended a memorial service for a friend's mother. She was only 43 years old and died after battling cancer for most of this year. It was a beautiful service. People were invited to share memories and family and friends read poems and sang songs. It amazed me that there were so many people there whose lives she touched. They talked about how she gave her time and love to those in need and how she was a wonderful wife and mother. Someone said that she lived a fuller life and accomplished more than many people who live to be 80. It feels strange to say that a memorial service inspired me but it did. I can only hope that one day these will be the kinds of things people will remember about me. In the mean time I will try each day to be the best person I can be.
Tina
Don't forget to sign the guestbook!
Wednesday, October 29, 2003 11:20 PM CST
Happy Halloween to everyone!
We are definitely looking forward to a fun holiday here! Last year Jaret got out of the hospital the day before trick or treat night and just had no energy to even go out. About two years ago is when Jaret began feeling sick so he didn't have much fun that night either. So this year will be fun (even if I have to carry him to every house!) Aunt Tracy is coming all the way from Chicago to see us for Halloween. Little does she know that I am putting her to work passing out candy since daddy has to work that night. The boys always go out trick or treating with their two year old cousin Jordan. She's pretty much like their little sister. However this doesn't stop Jacob from wanting his own little baby sister - he says "Jordan is so cute - when are we going to have another baby, mommy?" Maybe when the baby is cute enough for HIM to change the diapers!
It's been a busy week for all of us. Jaret had his first field trip to a fruit farm last week. They learned about pumpkins and got to take one home along with some indian corn, apples and gourds! Daddy helped out with the trip which included a hayride. They had a lot of fun until it was time to go. Jaret did not want leave daddy so he cried quite a bit when he had to go. Jacob had a Cub Scout trip this week to a farm where they also had a hayride and a hayslide. They got to pick a pumpkin and had a donut and apple cider. Today I got to go to Jacob's school and help with Pumpkin Math Day. What is Pumpkin Math Day you ask - well the kids do a lot of measuring, weighing, comparing and counting with their pumpkins and then we carved them. I even got to experience a fire drill for the first time in 15 or so years. It was fun spending time with his class and watching how Jacob acts around the other kids. He is a big showoff - especially for the girls! Speaking of girls - He got a phone call from one of the girls in his class. I didn't realize when she said Bobbi that she was a girl until he finished talking to her 20 minutes later. Another girl told me today that he was so funny and that she and her friends chase after him on recess. His dad would tell you that he gets this from him but don't believe that for a second!
Other than that excitement, Jaret has a pretty bad ear infection. We couldn't get the usual amoxicillan because it was so bad so we had to get the strong stuff and apparently it does not have the same yummy bubble gum flavor! Jaret has become quite skilled at not taking medicine. He can store medicine in his mouth like a squirrel! Even the nurses were impressed. They would suggest all of their tricks and we never had much success. Anymore it has become a battle of wills. When he knows he's going to have to take it either by choice or by me holding him down he usually gives in and takes it.There were times when we were in the hospital and the nurses would bring in five different medicines every morning and night. This could be more stressful than a lot of the treatments!
Jaret is still enjoying school and is getting very good at writing his name. We have to keep writing utensils away from him because he starts writing his name on everything. I am not complaining - these are all good problems to have!
I am still waiting to hear when Jaret's scans are scheduled for. They should be in two weeks but it just depends the schedule. He has to be sedated for some of the tests and for that they have to have an ICU or ER doctor scheduled. We also haven't heard about whether the insurance company approved the cochlear implant surgery or not. I feel like I am always waiting for something!!!
I have one favor to ask for anyone reading this who has two minutes to spare. There is a petition online that is trying to gain support for a childhood cancer awareness postage stamp. The stamp for breast cancer has raised a ton of money for research and this would be awesome for childhood cancer. Here is the link - www.thepetitionsite.com/takeaction/928701473 (this link is also at the bottom of the page). You can answer all of the questions if you want or just sign and you're done. Thank you so much!
Don't forget to sign the guest book!
Have a safe and happy halloween!
Tina
Sunday, October 19, 2003 0:47 AM CDT
"We have unrealized capacities that only emerge in crisis - capacities for enduring, for living, for hoping, for caring, for enjoying. Each time we overcome pain, I believe that we grow."
-Lance Armstrong, 5-time Tour De France winner and Cancer survivor
Hello Everyone!
I hope everyone is having a good weekend! I went to the Buckeyes game today with my sister Tara and her husband Brett. It was great to see them win again! We are huge OSU fans. Guy and much of his family, however, are Wisconsin fans (Boo!!) so I have been hearing it since last weekend. All is right with the world this week - we won and they lost!
It has been a busy week for us but with good things. Guy went turkey hunting this weekend with our neighbor. All of you animal lovers shouldn't worry though, I'm pretty sure the turkeys are safe!
On Thursday evenings I have been taking a sign language class. I really enjoy it and hopefully I will be able to keep up with Jaret. My sisters have also taken classes and everyone else is learning from us and from videos. My two year old niece Jordan signs almost as much as Jaret. Jaret is really getting used to signing more. He was even teaching my dad the signs of colors a few weeks ago!
Jaret's preschool teacher said that he is really starting to open up in class which I am relieved about. He is in a class with six other four year olds, but this is the second year for all of them. So not only is Jaret adjusting to going to school for eight hours a day and being away from home and me, he is learning a new language as he goes! I can't imagine what he was thinking when he went to school the first day. He has done really well with getting up and going to school for the most part. There are times though when I have to take him to school late after clinic appointments and he does not want to go and clings to me. The aide has to come to the office and carry him up the stairs crying! I feel so horrible leaving him but if I don't then he thinks he can get his way every time and believe me he has gotten his way a lot the past year and a half! It was very funny when I visited the school Tuesday for a conference with his teacher. I was sitting in the office when the kids came down for lunch. The secretary knows how Jaret clings to me so she had to tell me when he was coming so I could duck down in my chair. Then the principal comes by and hides me in the supply room until the kids were out of the hall, but it worked! I was in the school for an hour and he never saw me. I wonder if any other families are this high maintenance!
Jacob is doing well in the First Grade. He is starting to read short books and poems. His teacher sends home things that he had to read to us and the first time he read me a poem about colors I started crying! He looked at me like I was nuts! He also started Cub Scouts this year. Guy was hoping to do this with him but its on his workday so I am the lucky one! I thought I might be the only mom but there are quite a few and its nice to spend some one on one time with him. He has been through more than I think we realize since Jaret's diagnosis. He is so smart and is starting to ask some of those questions that parents dread. I had to give him a condensed birds and the bees talk! He is only six! He is already worried about wearing cool clothes and this weekend he wanted to fix his hair so he looked like Superman and James Bond!!!! I am not ready for this!
Next up for Jaret is scans sometime in November. He is finishing up his last dose of Accutane now. This is a drug normally used for acne but it has been shown to mature neuroblastoma cells so they are no longer cancerous.
I want to thank everyone who has left wonderful and encouraging messages in the guestbook. I look forward to reading these every day! I am amazed at the number of people who are thinking of and praying for Jaret - many of you I have never met. Thank you!
Tina
Friday, October 10, 2003 12:49 AM CDT
Hello everyone,
I first have to say I am overwhelmed by the number of times this site has been visited - over 2000 times in less than a week! I will definitely be proofreading and spell checking before I update my journal entries!
Jaret and I had very good visit with his oncologist today. We were actually out of there by 9:00 am - that has to be some kind of record! We will do our sixth round of Accutane which is the final part of his treatment protocol and then we will have scans done in about four weeks. Depending on those results we will decide where to go from here. On the scans in August there was a persistant spot on his skull (it looked about the size of a quarter - but what do I know!!) Even if that is the only spot this time the doctor said that he would be uncomfortable not doing any more treatment. And I tend to agree because neuroblastoma is so aggressive it could at any time start spreading throughout his body and take over. So we could be looking at more chemo(yuck!), more accutane or more radiation. My vote is for radiation but again what do I know - or better yet maybe the spot will be gone!! I asked if this spot could be tested to be sure that it is active NB before we would do any chemo and the Dr said a biopsy could be done by a neurosurgeon. Chemo scares the heck out of me because his blood counts take so long to recover and he is left so vulnerable for weeks. After his last chemo in November 2002 he got a fungal infection and had to have emergency surgery to remove half of his lung. This was the scariest thing I have ever been through including when he was diagnosed!
Jaret's blood counts were really good today
Hemeglobin - 12.2
Platelets - 84000
White count - 7.9
This is about as good as they have been in almost two years - yeah!!
Please sign the guest book - I want to know who these 2000 people are :-) !!!
Have a good weekend!
Tina
Monday, October 6, 2003 11:53 PM CDT
Hello everyone. Jaret continues to feel better every day. I am amazed at the amount of energy this kid has. He has been through so much and now all of a sudden he spends eight hours away from home for school (including two hours on a school bus). He has to get up at 7:30 a.m. so I figured once he started school he would be ready for bed at 8:00 every night but I should have known better! He has developed an amazing ability to adapt. I just can't figure out why I'm so exhausted now - I can actually take a nap.
We see Jaret's doctor on Friday for a check up and to get our last prescription for Accutane. This is the last part of the original treatment plan. We will have to wait and see if the next scans after he finishes the medicine have cleared up the last bit of cancer.
We are still waiting to hear about the cochlear implant. The dr sent everything to the insurance company for approval. We were hoping to have the surgery done by the end of the year but we will have to wait and see (we are getting very good at this!)
Thanks for checking up on Jaret and I will update more later.
Tina
Sunday, October 5, 2003 1:27 PM CDT
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