History

Friday, October 14, 2005 8:53 AM CDT

Oh my gosh, I can't believe it has been so long since I have added a journal entry! Jason has been doing so well! We had a wonderful summer and lived like "normal" people! No doctors, pokes, scans, and all that stuff except in August when we had our final follow up appointment with the surgeon Dr. Coran. He only had an xray and it came out with great results! Jason has grown so much over the summer and is just the funniest, sweetest boy. He keeps us laughing all day long with his funny antics. He is so compasionate too. I do think that he may have more empathy and compassion since he has gone through so much the last year and a half.
We have just returned from Jason's CT scans and labs and visit with our oncologist Dr. Mody. We were in Ann Arbor Tuesday-Thursday evening. Once again, Jason was a hero. He did not need to be sedated for scans which is great! Why sedate him if it is not needed? He held perfectly still while they inserted IV and gave him the contrast and all through the scan!! What a guy!! We always get the same questions every time from the nurses and technicians, and that is "Is he always this good?" and "Wow, does he EVER cry??" We proudly answer, NOPE!! :) On Thursday, he did equally well for the blood draw but not too thrilled about his urine bag on his poor peepee! LOL He does not like that at all. He doesn't cry but he will cross his legs and say NO! Can ya blame him? Ouch, that thing is sticky!! Anyway, the poor guy had to get two bags because the first one leaked and most of the urine went in the diaper. He had to get another bag on and we went to get something to eat and he announced he peed again so we are like "Yeah! Lets go!" so we marched back to Dr. Mody's office only to find out the SECOND bag leaked too! Ughhh....This one leaked out the top as the tape became unstuck. The nurse squeezed what little bit got in the bag into the speciman jar and we are expecting he would need a third bag. They need at least 10 ml. and we got just barely 9 ml. Thankfully the nurse said "Thats good enough!!" Yippee!!
ANYWAY, for the awesome news now! The CT report reads as follows:
THERE ARE NO PULMONARY NODULES. THE LUNGS ARE CLEAR.
THERE ARE NO ENLARGED MEDIASTINAL, HILAR, OR AXILLARY LYMPH NODES.
NO OSSEOUS DESTRUCTIVE LESIONS ARE IDENTIFIED.
IMPRESSION: NO EVIDENCE OF METASTATIC DISEASE.

Now is that an awesome report or what??? Whew!!! The blood work is all normal too and looks great!!
Now we just wait for the VMA/HVA report which takes a week. For the first time ever, I am feeling ALMOST 100% confident those results will be good. What a great feeling that is!

Sydney and Hailey are doing great. Sydney is in third grade now and has lots of homework! Hailey had a hard time starting first grade and cried alot the first couple of weeks. She missed her mommy and daddy. She is better now. She really had a hard time with us going away for three days for Jason's appointments. She missed us a lot. Such a Momma's girl.

I have several new pictures of the kids and plan to put them on the site soon! So check back to have a peek at our cuties :)

As usual, THANK YOU all for your continued support and prayers for the little man. Prayers have gotten us through the toughest 18 or so months we have ever had! We feel so blessed, not only by your support and prayers but that Jason continues to do so well!!

Love, Melissa

Saturday, May 28, 2005 10:01 PM CDT

Hello everyone! I know it has been a month since I updated this page. Its been so busy around here getting things ready for spring and summer, planting flowers, wrapping up the school year for the girls, etc! Jason seems to be doing just wonderful! He keeps us laughing day in and day out. He is such a ham and has the biggest vocabulary. There is not anything he can't say now! I love watching how much he is learning and watching the wheels turn in his head. Today is my gramma's 82nd birthday and we called to sing to her and we put Jason on the phone to talk to her and he was soooo shy and would not talk to her! I think he was confused about who she was as we told him it was Gramma King. We were with HIS Gramma King (my mom) and he kept looking at her and then looking at the phone in utter confusion! He did not understand there was more than one Gramma King!
I have a lot of things to update. First, our friend Toni with the brain tumor: She had her surgery and was able to have 95% of her tumor removed! The tumor was benign!! ANOTHER MIRACLE!! She will have radiation to kill the remaining 5%. She is still not completely out of the woods though as she took a fall shortly after returning home from the hospital and was back in the hospital for a few more days. She is developing blood clots now in her arms and is on several medications. Please continue to pray for her.
Mike called me this evening from work and asked me if I had seen todays paper. I said, no I have not. He said he would bring the paper home and said that there was a front page story of a 3 1/2 year old Midland girl who passed away this week from neuroblastoma. I was shocked and very saddened to hear of another Midland child with this horrible cancer. Our hearts go out to this family and our prayers are with them.
The Neuroblastoma bracelets (like Livestrong) are FINALLY available! After months of production and getting them set up for sale on the CNCF website, I ordered some immediately. They are gold to represent the childhood cancer color and say NB HOPE. If you would like some, please let me know! All proceeds go to the much needed funding for neuroblastoma research.
Speaking of funding for pediatric caner reaserch, I am thrilled about Afleet Alex winning the Preakness last weekend!! Afleet Alex was named after the owners son but also after Alexandra Scott. If you do not know of Alex Scott, she is the little girl who when she was 4 years old wanted to help her hospital and doctors raise money for childhood cancer research by holding a lemonade stand. Her story grew and became so widely known that every year, hundreds of families hold thier own Alex's Lemonade stand and all proceeds go to pediatric cancer research. Sadly, Alex died last August after battling neuroblastoma for 4 1/2 courageous years. Before she passed away, she had a goal of reaching $1 million by the end of 2004. That goal was met and people continue her legacy of raising money by having their own lemonade stands. We hope to have one this summer too! Anyway, getting back to Afleet Alex, if he won, then a portion of the winnings were to go to pediatric cancer research in memory of Alex Scott!!! It was a TRUE MIRACLE that the horse WON!! That horse nearly fell to the ground rounding a corner and was way behind. In no time at all he was #1!!! I could not believe my eyes! I prayed for this horse to win and I just cried when he did win. Alex Scott was looking down on that horse and jockey!!! GO ALEX!!
I also wanted to mention that a little girl that I had been following closely on her website (she really captured my heart) Alexia (Lexi) Florey passed away a few weeks ago. It just breaks my heart. I prayed so hard for her and continue to pray for her family as they grieve the loss of their beautiful angel.
Hopefully I won't take quite so long to update this page next time! Thank you all for your prayers, love and support.
Love, Melissa

Sunday, April 24, 2005 1:25 PM CDT

Hello! We finally have Jason's results back. We got them late Friday afternoon and let me just say this: PRAISE GOD! His xray shows nothing in the way of neuroblastoma and his urine test is as follows: HVA is 9.4 and VMA is 6.9. So, we go back for a check in August with the surgeon (he does his own study) and then we won't need to go back until October for CT scan, urine and blood and appt. with oncologist. Thank you all for your continued prayers. Jason is one LUCKY little boy to have beaten this cancer, and also stay NED. He is also so lucky to have all of your support and prayers and love. Dr. Mody said that the first 18 months are the most crucial and if we have gone 12 months so far. If we can get through the next 6 months without relapse we are doing fantastic!
On another note, please keep up your prayers for our friend Toni Rapin (who has a brain tumor). Apparently the tumor has grown so rapidly that it is pressing on her hypothalmus and her eye sight is fast detiorating. Her surgery is on the 27th and surgery will take at least 8 hours. She needs all the prayers we have to offer her as this is a very risky surgery.
Thank you again and will update again soon...
Love, Melissa

Wednesday, April 20, 2005 8:42 AM CDT

I am sorry I have not updated the site since our appointment last week. I was hoping to have results before I updated, but as of today, we are still waiting for those! Instead of a CT scan this time, he had an xray done and blood work (we do have those results and those look pretty good), and urine catecholomines done. The oncologist said he would call us on results but has not yet. I am patiently (ok, not really patiently!) waiting for that call. If we do not hear anything by tommorrow, we will put a call in to him. I am hoping this is a case of "no news is good news". Anyway, if both of those results show no problems, Jason will not need more scans until October! We still need to go have another followup with the surgeon and another xray with him in August (the surgeon and oncologist are doing separate studies on him-its nice to know that we have two medical opinions). Again, I have to say that Jason charmed the pants off everyone again at his appointment. Did not cry for blood draws and gave every nurse such a big cuddly hug. He got about 10 stickers for being such a cutie ;) I HAVE SAID IT BEFORE AND WILL SAY IT AGAIN, THANK YOU ALL FOR YOUR CONSTANT PRAYERS FOR OUR LITTLE MAN. WE APPRECIATE YOU ALL SO MUCH. I will update tomorrow or Friday, as soon as I know the rest of the results! Love and hugs, Melissa

Sunday, April 3, 2005 12:27 AM CDT

Hello everyone! Thank you to all who have checked on Jason's site and signed his book. We really appreciate the kind notes and prayers. Jason has his next set of scans and tests on April 14th. As the time grows nearer and nearer, the more anxious and nervous I get. He has been acting as goofy as any normal 2 year old boy though, so I pray that means that he is healthy all the way through his body! The only thing that concerns me is that a couple of days ago he came to me and I noticed a bump in the middle of his forehead. I asked him how he got it and he said in his two year old voice "Oh, um.....on toilet..bump it" It has a bruise on it now and I find it odd that he never made a sound or cried when it happened. He usually will at least whine when he hurts himself. Of course little bells immediately go off in my head thinking that it could be something else going on. I have heard one too many stories of children whose neuroblastoma presents itself in bumps on their heads that won't go away. We will continue to watch it and I am sure it is nothing to worry about, but still!
We had a wonderful mystery trip to Chicago! The girls were so excited when they figured out where we were going. A song by Chicago (the group) came on the radio in the van on the way to the train station and Daddy said that it was a clue and Sydney geussed it! We went to Navy Pier, the Hancock Observatory, Cheesecake Factory, Giordanos Chicago style pizza, on a carriage ride, shopping and the American Girl Place. The girls each got their very own dolls that look just like them. It was fun and the weather was fairly decent.
I wanted to ask of you all to add a very special person to us to your prayers. A very good family friend (Toni Rapin) has been losing weight, very lethargic and recently also been passing out. It was finally determined what the cause is. She has a brain tumor the size of a tennis ball. It has her brain stem, hypothalmus, and other things all involved in it. At this point they do not know if it is cancerous but their main concern is to bring her blood pressure down (which they have put her on medications for) so that she can have surgery. The tentative surgery date is April 27th. It is not for certain that the tumor is operable but we all are praying so hard. They will know when they start the surgery if it can be removed. They will also do a biopsy at that time. Anytime between now and the surgery date, she could go into a coma because of the size of the tumor. They have determined that the passing out episodes are actually seizures. Her short term memory is very bad too. Toni is a wonderful friend and like another mom to me (her daughter Nikki is one of my very best friends and I think of her as a sister). PLEASE PLEASE PLEASE keep her in your prayers. We are having a hard time dealing with this news.
I also ask that you keep Alexia Flory in your prayers. Lexie is a five year old sweet girl with neuroblastoma. They are dealing with relapse and her parents have recently been told that nothing else can be done. I have gotten to "know" her quite well through her website. Please keep this family in your prayers. www.caringbridge.org/tx/alexiaflory
Last but not least, please pray that our Jason is still healthy as can be on his next scans!!

Thank you all and I will be sure to update when we get Jason's next scan results!

Thursday, March 10, 2005 9:35 PM CST

Hello! Sorry it has been a while since I have updated. No news is good news! Jason is doing well! Mom and Dad still worry everyday about him though. Just can't help it. Some days we are fine, but then other days we just worry so much that he will relapse or we think about the what ifs, such as what if he has relapse somewhere other than in the chest where he gets his CT scans? How would we know? Or what about the bone marrow? He had a bone marrow aspiration at diagnosis and it was clean, but they say a bone marrow aspiration is like fishing. Just because the small sample of marrow that was tested for NB cells was clean does not mean that the rest of the marrow in his body is also free of NB cells. I know the chances are slim, but as a parent I just can't help but worry.
I've been having some health issues lately. Since the beginning of the year I have had pain in my back, stomache trouble, weakness or achiness in my joints and fatigue. I finally went to the doctor and have several tests to do or have already done. They did a urine sample and blood work to do a thyroid panel, etc. and also I will have an ultrasound on Monday to check my gall bladder. It could be my gall bladder or it could be IBS (irritable bowel syndrome). I got a list of things that could cause irritable bowel syndrome and #1 on the list was stress and worry of everyday things or loss of a loved one (worry about losing someone) BINGO, sounds like me.
About the neuroblastoma car magnets, I got them in the mail and am so proud to display mine on my van. I have given some out to family and friends as well. People who have seen Jason's site through the warrior page have emailed me inquiring about them and I am happy to spread the word about the magnets and direct people on where to get them!!
We decided to go to Chicago for spring break! We are surprising the girls and telling them we are taking them on a mystery trip! It should be great fun. I love Chicago. We need to make some good memories of spring break. It was last spring break that Jason was diagnosed (March 30) and our whole world was turned upside down.
Tomorrow Sydney will be 8 years old! It is so hard to believe! My baby is growing up soooo fast. We are going to celebrate by going to Olive Garden. She loves that place! Sydney and I went to the store to get a birthday cake for tomorrow and when we brought it home and set it on the table, Jason was just so fascinated with it. He kept saying "Cake!" and singing Happy Birthday to you!! I think he thinks it will be his birthday again!
Thank you to all who continue to pray for Jason everyday. I thank God every single day for his continued good health and I am CONFIDENT that all of you who pray so hard for him are the reason he is still doing so well!
Love, Melissa

Sunday, February 20, 2005 6:38 AM CST

Hello everyone! Just wanted to let you know that there are neuroblastoma car magnets now available. I have ordered about 10 of them. If you would like one, please let me know! The cost is $2.50 plus shipping. All proceeds will go to Childrens Neuroblastoma Cancer Foundation (CNCF)for neuroblastoma research. A mom whose child has just recently passed away from neuroblastoma had the magnets made and also is responsible for the artwork on them! Her goal is to raise awareness of neuroblastoma first so that more people know about it and more money can be spent on research. Neuroblastoma research is so grossly underfunded, it is in dire need of awareness!! She said she is "so tired of hearing people say 'neuro what?'" which is exactly what I say. I said this same thing though when Jason was diagnosed.
I also wanted to let you know that there is another angel mom (her daughter Molly passed away from NB a few years ago) who has taken charge of ordering 10,000 neuroblastoma bracelets (like the LIVESTRONG ones) and they will be available next month. Those will be $3.00 each and those proceeds will also go to neuroblatoma research. I will let you know when exactly they will be available for order but you can order those directly through www.cncf.com.
Jason is doing well! We thank you all for your continued support and prayers.
Love to all,
Melissa

Friday, February 4, 2005 8:25 AM CST

We finally got Jason's urine test results after calling for them on Monday. They are higher than last time (the numbers) but still within normal range (except one number is slightly above normal range). Not sure why they are higher now but hoping that they are not on a slow trend upward. Right now I am not too concerned with it though. Just keep on praying they don't go even higher on his next check.
Jason had a great birthday. He loves saying "TWO!!" when asked how old he is now. He got some "Blue Unner ware" for his birthday! He is not quite ready for the potty chair but he loves wearing his big boy underwear around the house! We had a joint party for him and his cousin Torrie, whose birthday is the same day as his (she is 4) at the Holiday Inn and they enjoyed using the pool! They had a "Dumpy Dumpty" cake (Humpty Dumpty) which Jason loved. I love how he pronounces Humpty Dumpty. Anyway, thank you all for checking in on the little guy and for your continued good thoughts for him!! Thank you for stopping by!

Wednesday, January 26, 2005 8:07 AM CST

Hello! Still waiting for those test results on the catecholomines. I am hoping by tomorrow we shall hear something. I know it takes a week or sometimes more. If I don't hear by Friday, I will be calling!
I've been having a tough couple of days. Some days I am doing great and feeling optimistic. But there are days...I suppose it will always feel that way. My mom says that parents never stop worrying about their babies, even when they get to be 33 years old like me :) I feel encouraged that Jason' chance of relapse is small but then I read a post on my support group for Neuroblastoma children and I start to literally freak out again. Yesterday there was a post from a mom whose child was diagnosed with neuroblastoma stage I and had surgery to remove just like Jason. He was in remission for 9 months and then it came back at stage 4. I know this is a rare occurance but it still makes me think and realize that it can happen. Nothing is impossible. Will I ever find a balance between feeling so anxious and nervous and worried and just feeling blessed that my little guy is doing well? I am sure that other Neuroblatoma parents (or parents of those children with any kind of cancer) can understand this feeling very well.
Jason is still sick with a crappy cold :( Tis the season! I am very ready for spring!!
On another note, Sydney came home from school on Monday with a story she wrote at school. It touches my heart. She read it out loud to us. I plan to keep it in Jason's keepsake box. Here are some excerpts:
"Tonight my mom and dad and J.J. (she calls him that) are going to Ann Arbor. My brother has cancer. It is called neuroblastoma. Neuroblastoma is a type of cancer. Cancer is a type of sickness. You do not want to have cancer. When you have cancer you are very sick. Well Jason is not sick anymore. When I went with them, they said that Jason did not have cancer. They said that they consider him cancer free. The cancer is a tumor. They will be be gone for 2 more days and we get to play with gramma and go to McDonalds and the Dollar Store. By Sydney Laplow"
:) Of course this was all written in second grade spelling. I am so glad that she has the opportunity to put her thoughts on paper and that Mike and I can read them and see what she is feeling and what she really knows.
Thanks for checking in on us! God bless!

Saturday, January 22, 2005 8:29 PM CST

Hi everyone! Thanks for checking out Jason's website and to those of you who signed his guestbook, we really appreciate your kind words. Check back often for more updates on our little guy. Molly pointed out that the pictures are very large. I am aware of that and am trying very hard to figure out how to compress them. I am not very good at that kind of thing! So, in the meantime, I apologize that you will have to scroll from left to right to read the homepage, since the picture is so big. I read a story today about a little boy in Atlanta and thought I would share it with you. He is a miracle boy! It goes to show you how very different all neuroblastoma cases are. Jason's case is very unique (and rare) as well since he was able to get surgery alone to give him his NED status. Here is the link to the newspaper article. I must note that much of what the mother and father of this little boy in the article say about how they felt, feel about this whole experience with their son mirror exactly alot of how we feel.
http://www.ajc.com/health/content/health/special/1103/13child.html#

I hope the link works for you. Just copy and paste into your browser.

We are still waiting for the catecholomine test results but will keep you posted on the results as they come in.
Jason is sick right now, poor guy. He has a bad cold and cough and is just generally miserable. I hope he will be feeling better soon because he has a very important occasion next week! He will be celebrating his second birthday on January 29th!

Thanks again for checking in on him and for your continued prayers and love.
Melissa

Friday, January 21, 2005 10:40 AM CST

Forgot to mention a funny for you. While we were walking around the hospital waiting for him to put out a urine sample, we saw an older gentleman with a long white beard and white hair sitting in the main walkway on a bench reading the paper. Jason yelled out and pointed "SANTA!!" We about died laughing!

Friday, January 21, 2005 10:29 AM CST

Hello everyone! We have just returned from Ann Arbor and I am so happy to report that Jason did wonderful (as usual) for his tests. He never cries when they draw his blood, stick the IV in his arm, nothing! He never has cried. The nurses are always so amazed. But here is something new this time, he did not even need to be sedated for his CT scan this time!! He held perfectly still and did wonderful! Not even TWO years old yet!! What a guy!! Needless to say, he got 3 stickers for it from the nurse :) Wonderful news, his scan is completely CLEAN! I am thrilled. Last time he had a CT scan there were some questionable spots on his spleen. There were several lesions on his spleen. Dr. Mody said that is was likely a result of an infection and he was not worried about it being neuroblastoma. (Of course I, as his mom, worried anyway) Dr. Mody must think I am a nut case, I worry so much ;) On these scans, the lesions are gone! Yeah!!! His blood work looks good and now we just wait for the results of the catecholomine test, which will be another week. I hate waiting! I am confident that those results will be good too. (at least I am really praying hard for that!) It took Jason 4 hours to put out a urine sample for us! Well, at least that is better than last time, it took 5 hours last time. He has this phobia of that stupid urine bag they stick to his private parts and just cannot pee in it! We walked around the hospital, got him some Gatorade to drink and he took a nap. He woke up and still, no pee. But finally, he did. You can stick him with countless needles, put him through that loud CT scan machine, but don't mess with his private parts! He doesn't like that! hehehe! Anyway, thats it for now and I'll keep you up to date on his catecholomine results. When we go back to clinic in April, he won't need a CT scan but just blood and urine test and visit with Dr. Mody. His next CT scan will be in July. Thanks for checking in on our little guy!

Monday, January 17, 2005 3:16 PM CST

I have thought about creating this page for a long time now. When Jason was first diagnosed, I read several Caring Bridge pages and always thought I should make a page for Jason, but never did. Finally, after 9 months I decided to make a page for him as a journal for me to put down my thoughts and also to keep family and friends updated on the results of his scans and tests. I also would love it if you would sign his geust book as I plan to keep it for him to read when he grows up so he knows how many people love him and prayed for him! I want to start off by telling Jason's story from the beginning. It all started in the winter of 2004. Jason had been sick alot with respitory illnesses and high fevers. He coughed constantly but the doctors never seemed to find anything terribly wrong with him, just one respitory illness after another. We had a joke with our nurse practitioner that Jason just loves her so much that we had to come back in to see her because he missed her. We were there every month for while, it seemed. In late March, Jason had been on an antibiotic for 10 days for fever and respitory problems. He seemed to get better but as soon as he finished the medicine, he had a fever again and was sick again. I called the doctor to see if we could get a different prescription for him. They said we ought to bring him in again. So off we went AGAIN! I thank GOD that they wanted to see him because that would be the day we found out there was something much worse wrong with him. The nurse practitioner Cindy took one look at him that day and said "It just does not seem right that he is sick again after 10 days of antibiotics and he just doesn't look good. I am going to send you for xrays to see if he has pneumonia" So, off we went to the hospital for xrays. I called Mike at work and he left work to come join us at the hospital. It was not until 10 pm. that night that the doctor called us and said that it looked like he had a touch of pneumonia but that they saw something else on his xray. A rounded "object". He asked if Jason could have swallowed something. We said it was possible because after all he was only 13 months old and he does have two big sisters with lots of barbies and accessories laying around the house! Although we keep a close eye on him, you never know! Those babies are fast!!! The doctor told us to come back in the morning for followup and to talk to him about what we would do. Looking back, I don't beleive that the doctor actually thought he swallowed something but that he KNEW it was a mass of some kind and did not want to alarm us that late at night. When we walked into the doctors office the next morning, they told us he did not swallow anything, but that it was a growth of some sort. They wanted him at the hospital right away for more tests, MRI and CT scans and blood work. These tests occured on Friday and we were scheduled for more tests on Monday. That was the longest weekend of our lives, waiting and wondering and scared. On Monday, he had more scans under sedation in which one of our pastors joined us to pray with us. We are so thankful for his presence that day. Finally at 5 pm. we had a consult with our family doctor, Dr. Aloff and she told us that we were going to Ann Arbor on Thursday and she had it all set up for us to meet with an oncologist. A what??? Oncologist? Isn't that a cancer doctor? She said she thought it was something called neuroblastoma. Whats that? Neuro what?? We still had to wait until Tuesday afternoon to get the full results of all his scans to see if his cancer had spread anywhere else. That was awful waiting. We were climbing the walls. I couldn't breathe. THANK YOU GOD that they did not see any other tumors in his body!!! Praise the LORD! That Thursday we went to Ann Arbor, Univiersity of Michigan Cancer Center and met with Dr. Mody, our oncologist. He wanted Jason to have an MIBG scan the following week but he also said that he felt that Jason was "one of the lucky ones" and would be classified in one of the lower stages of neuroblastoma. We met with a surgeon, Dr. Coran who looked at Jason's scans and said he felt that he would be able to surgically remove his tumor right away. His tumor was a thoracic paraspinal tumor, which means that it was next to his spine in his chest, but not touching his spine, which is a wonderful thing. Had it been touching any organs or his spine, it would have been much trickier to remove. Jason had his MIBG scan the following week which only showed metastisis in the origional spot. Jason had his surgery on April 15, 2004. It was a success and he was able to get all of his tumor and positive lymph nodes. At this point, we take him to see Dr. Mody and for CT scans, catecholomine tests and blood tests every 3 months. So far, the Lord continues to bless our little man and he is still in remission. There is a small chance of recurrance and that is what we worry about now but the chance is very low. Of course, as parents, you cannot help but think about that small percentage and the what ifs. We are his parents and boy, do we love this little guy!! This whole experience has changed the way we view life and to never take anything for granted. It has increased my faith in God and not a day goes by that I do not stop to thank God for Jason's continued status of NED (no evidence of disease).

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