Journal History
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Friday, March 29, 2013 10:24 AM CDT
Nick reported bright and early this morning for his MRI. In fact he beat the receptionist, so he wasn't happy that he had to get up early to be there and the office wasn't open yet!
In typical Nick fashion he had an abnormal reaction in the middle of the MRI ~ for some reason he began to not feel well and almost passed out. So they take Nick out of the MRI and start figuring out what is wrong. Mom gets called back and Nick of course is worried he has upset me! After a thorough examination and hooking him up to a monitor to make sure his heart is o.k. they decide to finish the MRI.
After a brief time of observation and the doctors consulting with each other, Nick is released to go home with strict orders to go to the clinic if he feels anything different or odd. We are to call this afternoon and will hopefully have some preliminary results.
Friday, March 22, 2013 4:23 PM CDT
Wow! It has been a long time since I have used this site! In fact I wasn't even sure it still existed. Needless to say I will use this to update family and friends on the latest and most recent events occurring in Nick's health.
Over the last week and a half Nick had been complaining with some issues and I urged him to come home to see a doctor. Of course he didn't want to miss class or get behind so he kept holding off till he was home for Easter.
Things escalated and on Wednesday evening his pain was so severe he asked his room mate to take him to the emergency room. While in the ER they did a scan and noted some questionable abnormalities and recommend he follow up with his oncologist.
So Mom went into action ~ drove down to pick him up and got him in to see his doctor at the oncology clinic at Baptist Hospital.
We spent ALL day having tests done and although we don't have everything answered we do have some hopeful news that this is possibly not a cancer recurrence.
The spot on his liver that was noticed by the CT at the ER appears to be a benign liver tumor detected in many Neuroblastoma cancer survivors. The bony lesions that were observed are possible results of prior treatment some were actually there in previous scans. There were some minor changes and a new one discovered but still not a cause for his pain. The future plan is to have an MRI to see if we can get more concrete answers and a possible biopsy for definite answers. We still have no clear cut reason for his pain but are praying and hoping it will cease on it's own.
We appreciate all the prayers, concerns and help being offered. We truly feel your support, love and prayers.
Wednesday, November 12, 2008 4:18 PM CST Updates have gotten far and few between but no news this time really means good news. Nick has been relatively healthy and feels great. He started attending Calvary, the same school his brother goes to, where Kela graduated and where his mom works! He loves it! He is a freshman this year and now has his learners permit. YIKES! He is setting a new record. He so far except for medical appointments has only missed one day of school due to illness. Friday, February 29, 2008 7:15 PM CST Well if the lack of updates means life is becoming more normal then I guess we can rejoice in the good news. Sunday, September 16, 2007 10:33 AM CDT It has been much too long since my last update. I apologize. Life has been busy and now that school has begun I am trying to catch up on some sort of normalcy with our schedule. Nicholaus is doing well. He still struggles with fevers and is at time lethargic but it seems to be decreasing! He has started school and has so far been able to attend the majority of his classes so far. In fact this past week he made it to school for the whole week... the first time in 2 years. Amazing. We are hoping we can continue setting records. Tuesday, May 8, 2007 5:41 PM CDT We unfortunately didnt get the chest tube removed today. After doing the 2nd xray for the day the doctor has decided that there is a small pocket of air still near the top part of the lung so they want to watch that and make sure it doesnt get any bigger. They have cut off the suction on the chest tube so we have progressed one small step. After tomorrows xray if the pocket of air has not increased the doctor said they will remove the chest tube and observe for a while and possibly send us home. I am not going to hold my breath on getting sent home but am hoping that we can get the chest tube removed. Monday, May 7, 2007 11:11 AM CDT We we didnt hear what we were hoping for but we are still hanging in there. The doctor says there is still lots of drainage so they will not be removing the chest tube today. Sunday, May 6, 2007 1:34 PM CDT Last night was more restful and we feel like we got more sleep. Nicholaus seems to be doing better, eating well and drinking lots of fluids but he still has the chest tube in as there is still alot of drainage. We were told that yesterdays x-ray looked good but havent gotten the results from todays yet. Nicholaus was able to get out of the bed today and sit in a chair. He wasnt happy about this and moving was quite painful but once in the chair he was able to sit there for several hours. We still have no idea of when he will be discharged but we know the chest tube needs to come out first! Friday, May 4, 2007 9:34 PM CDT It has been a very long day. Nicholaus arrived at the hospital bright and early and was the first pediatric patient to be taken into the OR. (That was after several nurses told us they had been looking all over for us as they thought we were inpatient. I quickly told them not to go there) Thursday, May 3, 2007 9:40 AM CDT Surprise!!! We are home and didnt get admitted. We arrived at the hospital this morning and went through all the pre-admit paperwork and then while waiting for our room got a call that oops .... someone made ANOTHER mistake and we arent being admitted today but tomorrow prior to the surgery. Thursday, May 3, 2007 7:34 AM CDT Changes once again! We got a callyesterday afternoon after I thought we had straightened everything out and yes surgery is still Friday morning but we are to be admitted Thursday. This is not how they normally do things so we are not sure what is going on but we will show up as planned and see what happens. So as it stands now we will be admitted Thursday morning and have surgery at 7am Friday morning. Wednesday, May 2, 2007 2:13 PM CDT What would life be without last minute changes????
Thursday, April 26, 2007 6:40 AM CDT We have met with the surgeon and surgery is scheduled for next week, May 3. This will require another stay at the hospital as the procedure can be quite painful and Nicholaus will need a chest tube. We are hoping and praying that this will give us a definite diagnosis and that we can then begin a treatment plan that will help Nicholaus to soon be feeling better and living a life more normal of a 13 year old. Saturday, April 7, 2007 9:15 AM CDT I've tried adding this journal 3 times now and keep getting technical difficulties! Thursday, March 29, 2007 1:59 PM CDT We got a call from the doctor today and the results from one test done while Monday, March 26, 2007 8:10 AM CDT - Setback Saturday, March 24, 2007 9:38 PM CDT It appears that the medicine the doctor started Nick on is working!!! WOO HOO! Nick has gone for a full week without fevers. He has even gone to school for 1/2 day one day and 3/4 of a day one day. Next week we are biting the bullet and trying a full day. He is so cute... anyone he runs into the first thing he says is, "I went to school today!" Nothing you would think a 13 year old would be saying!!! When we have picked him up each day he says he feels good and has a big smile!! Tuesday, March 20, 2007 12:45 AM CDT We are inpatient still and this is the first chance I have had a chance to update. Friday, March 16, 2007 3:07 PM CDT Wow, I didn't realize how long it has been since we updated the site! We have seen some improvement with Nicholaus' energy level since he has been on the thyroid medicine but he is still running random fevers and has days of no energy and feeling poorly. Thursday, January 25, 2007 7:37 AM CST Another snag in the ongoing barrage that has hit Nicholaus. We had our regular visit with the endocrinologist to determine whether we would keep Nick on or off the growth hormone. He saw some results fairly quickly but was having some side effect so we stopped the daily injections and the doctor decided to keep him off. Thursday, January 18, 2007 5:07 PM CST It has been awhile since we have added an update but no news in this case is "non eventful" news. Nicholaus is still struggling with general malaise and low grade fevers. We were hoping that the problem with his heart not pumping effectively was a result of the chronic fatigue. He is still on the homebound program with school. We keep hoping a positive turn of events so he can return to school. He has seen the pediatric cardiologist at Baptist and underwent a stress test. The doctor felt that Nick did better than he had expected Right now we are going to monitor his diet and put him on a mild exercise plan to see if we can prevent putting him on more medication. Thanks for checking in on us and please sign the guest book and let Nick know you were here. Monday, December 4, 2006 1:52 PM CST Nick has been slowly recovering from his hernia surgery, He walks around like and old man with a cane to help! We had to postpose our cardiology work up as Nick cannot do any physical exercise for 30 days, so he is unable to do the physical stress test that was ordered.
Thursday, November 9, 2006 6:27 PM CST Well, the official unofficial word on Nicholaus is that he is sufferring from moderate heart failure. We got a call from his oncologist at Baptist yesterday and she shared the results and initial concernsfrom his heart echo and lung function test. Brad followed up today with the nurse practitioner and after further review they discovered that there is significant decrease in both his ejection and shortening fraction. Not sure exactly what all that means except that his blood isn't being pumped effectively, resulting moderate heart failure.
Sunday, November 5, 2006 6:47 PM CST This week will be a busy one for us all. Monday Nicholaus will be having 2 teeth pulled, a continuation of the ongoing dental issues he's been plagued with a possible side effect of treatment. Wednesday, October 18, 2006 9:00 PM CDT Long day today! Nick saw the orthopedic doctor and he was very pleased with the the results he is seeing with the brace. It was great to have some good news! Nick had his appointment with the long term clinic at Brenners and they are actively trying to figure out what continues to go on with Nick. He will be having an echo of his heart scheduled as well as a lung function test. A possible lung biopsy is may be scheduled depending on the results and reviews of past and upcoming tests.
Saturday, October 14, 2006 9:48 AM CDT The results of Nicks cultures have come back and he has a staph infection. We have started him on a new antibiotic and are hoping this will take care of it. The BIG problem is it is liquid form and tastes terrible. We've got one day behind us .... 3 weeks to go! Next week we follow up with the orthopedic doctor regarding his scoliosis and we see the oncology doctors for follow up.
Monday, October 9, 2006 9:05 PM CDT Well, The illness resumes and missing too much school is occuring again. Nick has been under the weather again for a week now with fevers and he has a really bad sinus infection. Unlike most of us we get an antibiotic and feel better within 24-48 hours... not Nick. His pediatrician joked with him today asking if he would read up on the medical books and journals and go through all the normal symptoms and responses to treatment other than marching to his own parade! His pediatrician doubled his dose of antibiotics so he is now on an adult dose but he doesn't seem to be improving. We headed to Brenners today to get cultures to see if we can treat the infection specifically. We won't have these results until the end of the week. Tuesday, September 19, 2006 3:10 PM CDT Nick has now had his back brace for several days. He is slowly getting used to it. Not sure how! We can really call him the turtle man as he has his own shell! He has seen the urologist regarding his hernia and he is scheduled for surgery in November. Next week he see's his growth doctor and they will evaluate the success of taking the growth hormone so far. The following week we see the oncologist for another evaluation. Thursday, September 14, 2006 8:09 PM CDT Nick has been ill again and missed 2 days of school this week. He has been running fevers AGAIN and his chief complaint is a headache. He is scheduled for surgery in November for his hernia. Another surgery under his belt! Wonder if he can make it into the Guiness Records.
Friday, September 8, 2006 5:54 AM CDT It was another successful week at school. Nicholaus made it all 4 days and only came home with a fever one day but recovered and was able to go to school the next day. He did have a run in with the school resource officer(AKA police officer) If it isn't that this child has had enough struggles.... He was reprimanded for carrying his saddlebag(bookbag) in the hall... I guess this is not allowed. Due to Nick's weakness and back issues he has been carrying this instead of heavy books and the bending and lifting from his locker. After a few emails,notes and phone calls his wonderful guidance counselor and teachers have straightened everything out. Needless to say he spent a few days worried about getting in trouble by the police officer. Sunday, September 3, 2006 12:46 AM CDT Nick spent the weekend visiting with many relatives as we celebrated his great Aunt and Uncles' 50th wedding anniversary. It was a grand time and fun hanging out with cousins... but the busy weekend wore him out as we had to come home from church early as he wasn't feeling well. Glad we have a holiday weekend to rest up before our next week of school. Friday, September 1, 2006 7:51 AM CDT Well, today will complete a full week of school for Nicholaus and he only missed one day due to illness.Nick woke up yesterday not feeling well and.. you guessed it running a fever. He did miss a small portion of one day. He had a dermatology appointment for his yearly check since he is at high risk for developing skin cancer. He got the all clear and we don't need another check for a year. We are hoping that his missed day was just a normal bug many kids catch at the beginning of school.
Friday, August 25, 2006 4:57 PM CDT Nick started his first day of school today but it was shortened due to a doctors appointment. He saw pediatric orthopedics today who x-rayed and discovered he had two significant curves on his spine. His recommendation was for Nick to wear a back brace. He will be measured to get an accurate fit and should begin wearing the brace as soon as two weeks. The only excitement Nick got out of the whole thing was to pick a pattern that the brace will be made into and crazy as he is he picked a blue snake skin pattern. Can't say that would have been my first choice but
Saturday, August 19, 2006 7:39 AM CDT Well, we went for a check up and got some good news and some not so good news. Nick has grown well this summer and his health has improved considerably. He is no longer off the charts for weight and is just shy of being on the charts for height. He is still much smaller than most boys his age but the pediatrician was pleased that he looks healthier than he had in months. His sinus issues have been much better and his fevers have decreased considerably. He had slight hearing loss in one ear but the doctor feels it is still in a range that doesn't warrant future testing at this point. YEAH! Friday, June 23, 2006 4:19 PM CDT Nicks visit with the ENT was status quo. His ear infection had cleared up but we are still waiting on the cold symptoms to clear up.
Tuesday, June 20, 2006 7:03 AM CDT Nick had his TV debut in the Orange County Chopper show which aired last night. It features Victory Junction and the bike they built for Sunoco. It was a two part episode that aired at 9 and 10 p.m. on the discovery channel. Thursday, June 8, 2006 10:22 PM CDT I am excited to say that Nicholaus' bone marrow was clear.... nothing on the biopsy or cultures. Great news but still no answer to his illness. Our current step is taking him off all his meds. Saturday, May 27, 2006 6:52 PM CDT Our whole family was treated to an exciting event. We were able to attend the World Premere of the new Disney/Pixar film CARS. Proceeds from Disney will be going to Paul Newmans' Hole in the Wall Camps which Victory Junction Gang Camp is a member of. We got to walk the red carpet with the stars and were treated to a private party and meal with some of the stars, and race car drivers. Paul Newman spent some time with the kids and signed autographs. The movie was great and I think it will be a hit when it gets to theatres. It was a long night but we all had a blast. Unfortunately no cameras were allowed to the premeire so I can't share any but the memories will last even without pictures. Friday, May 26, 2006 2:22 PM CDT Nicholaus had his bone marrow biopsy done today instead of yesterday as orginally planned. We did get some blood work and other test run but evidently an emergency occurred and Nick opted to go eat and have his biopsy done later, instead of waiting with a hungry stomach until they could fit him in. We were scheduled first thing this morning and all went well. He rested most of the day and is in some pain but doing remarkably well. Due to the holiday weekend we may not have results till mid week next week. We will update as soon as we know anything. Please keep us in your prayers as well as the doctors so that we can figure out what is going on with our wonder child. Tuesday, May 16, 2006 3:50 PM CDT Our update is long overdue as usual. We started Nick on the antibiotic but it doesn't seem to doing what we had hoped. Nick continues to run fevers, and he is weak and has no energy. Our pediatrician and the immunologist are consulting as to what route we will be taking next. Our hopes are that Nick can get through the rest of this school year and we can find some before the next year starts. Thursday, April 20, 2006 10:37 AM CDT We went to see our ENT for a follow up on Nicholaus' latest surgery and we got some interesting news. We originally were told that all tests were normal after the biopsies and cultures that were taken during surgery. At today's appointment we were told that he did have a greater than normal amount of staff bacteria and that it was resistant to some antibiotics. The doctor can't say for sure that this is the cause for Nick's illness and fevers but he can't say it isn't either. Right now the plan is to treat Nicholaus with long term treatment of antibiotics to see if they can kill some of this resistant staff bacteria. We will be starting Nick on 4 week course of antibiotics. We can only hope that this is going to work and get Nick on the road to health! Friday, April 14, 2006 1:06 PM CDT Well... we have mixed emotions as the results of Nicholaus' biopsies and cultures were all negative. We are quite pleased they were negative but... we still have no answers to the reason Nick has been ill. Nick made it to one day of school before spring break. He is currently at the beach with his dad visiting the North Carolina Aquarium and possibly a turtle hospital. They will be home later today. We hope everyone has a blessed Easter! Monday, April 3, 2006 8:27 AM CDT Nicholaus once again was a trooper through his surgery. He did well and the doctor said he was able to get good samples for his biopsies and cultures. We did have to stay inpatient overnight but came home to catch up on that needed sleep as we all know how restful the hospital is. Believe it or not Nick managed to get through this ordeal without pain meds until over the weekend when he was having slight pain and took only 1/2 dose of his pain medication. He continues to amaze us as to what he is able to go through. Tuesday, March 28, 2006 1:45 PM CST Not too much new news on this front. Wednesday, February 22, 2006 9:35 PM CST Our latest round of test have been slow to come in. Some with good news some with frustrating news. We are still waiting on a kidney function test and dates or another surgery we have been told needs to be scheduled. Nicholaus' most recent cat scan shows problems in the sinuses again. Our ENT was shocked due to the fact that at our last appointment with him he was pleased and impressed with how well Nicholaus had recovered from his last sinus surgery. The immunologist that we are seeing strongly feels that we are dealing with some sort of viral fungus that is in Nicholaus' sinuses and possibly lungs. The difficulty we are running into is that we need to know what kind to effectively treat it. As soon as we know what the next steps are we will update again. Please stop in and sign the guest book so that Nick will know who has been visiting his site. Thursday, February 2, 2006 9:46 AM CST We feel our visit with the immunologist was a good one. He spent alot of time with us going over Nicks records, the tests that have been done and basically checking everything out. He had some suggestions and ideas of what to look for so we will be having more tests in the near future. We are encouraged as he feels the tests already done have been good but that with Nicholaus' history and symptoms we need to begin looking outside the box.
Wednesday, January 25, 2006 10:50 AM CST Nicholaus continues to run intermittent fevers and feel rotten. We were totally discouraged when the GI doctors basically released him due to not finding anything clinical to cause this, Ped Onc doctors referred us to Infectious Disease doctors and so on and so on. The ID docs told me to allow Nick to push himself as hard as he can and come back and see us in 3 months. ... Meanwhile when we try to go to school even for a half day it wipes him out so that he spends the next 2 days in bed. We have him on the homebound program again with school which brings a teacher to the house 2 days a week for him. This is working well but I ache that he misses the normal life of a 12 year old child. He was feeling well enough to see his sister sing the National Anthem at her High School Boys Basketball Game last night but is still in bed as it turned out to be a late night causing him to be exhausted. Wednesday, December 7, 2005 4:00 PM CST Dear Friends and Family,
Wednesday, November 23, 2005 7:24 AM CST We are headed to the the hospital for Nicks' colonoscopy. He is doing well this morning - but not eating since breakfast yesterday has been rough.About halfway through the day when he had had enough soup broth, jello and apple juice he wished he had eaten more breakfast. But grandma to the rescue who brought by some bannana popsicles. Yumm... I don't know what he liked better eating as many popsicles as he wanted or just the yummy taste of something different. He struggled with only having liquids and no solid food but as always he is holding up like a trooper. He is having fun planning what he will eat when he can!! He has already informed grandma that we will need to get an extra large turkey for Thanksgiving tomorrow. Friday, November 18, 2005 2:01 PM CST We are now moving in the direction of getting a homebound teacher for Nick as he is just not making it to school. We were originally told that we did not qualify but we are exploring that option again with the assistance of the school social worker. The GI doctors have scheduled a colonoscopy for next Wednesday! What a way to start the Thanksgiving Holiday.Thanks for checking in on us. Please stop by and sign the guest book. Nicholaus really enjoys reading the notes. Wednesday, November 16, 2005 6:00 AM CST Well, we spoke too soon about Nick attending more days of school. He has only made it one day this week. In addition to that the school system is riding us on his excessive absences. Oh well just one more battle to fight. Wednesday, November 9, 2005 1:32 PM CST Nicholaus has managed to make it to more school this week than he has all year, and that is even missing some due to 2 doctors appointments. Even though we've had a good week we are cautious as we are still in the process of testing.
Friday, November 4, 2005 2:21 PM CST O.K. another update but still no news~ Saturday, October 29, 2005 5:03 PM CDT I wish we had some definitive answers to give everyone, but we still don't. The good news is that all of Nicholaus' scans this week have been good and have shown no change with the spots on his lungs. The bad news is that he continues to run fevers and have pain and we have to find out what it is. The doctors are still telling us that they are going to figure this out. We just hope we can get some answers soon. More tests were run this past week but we haven't got any results back, other than he tested negative for TB. We return to Duke on Monday and hopefully after consulting with the infectious disease docs and the oncologist we will have a new game plan.
Monday, September 12, 2005 7:59 AM CDT Nick's echo discovered a defect in his heart valve which is causing his blood to not pump efficiently. This could be some explanation to his tiredness. We went back Friday for a catscan and spots were discovered on his lungs. We are returning today to determine our next step. The doctor is hopeful this is a lung infection or some type of fungus and not malignancy. Will update more as soon as we know.
Thursday, September 8, 2005 9:27 PM CDT We went to Duke today to hopefully get some answers to Nicks chronic fevers and his constant tiredness and feeling poor. In general things looked good but there are a few concerns on his heart function and some blood work levels which need some further exploration. Today we had the physical, bloodwork and an echocardiagram. Tomorrow we return for scans and more follow up. Tuesday, August 2, 2005 6:38 AM CDT Nicholaus will be going in for surgery at Brenners tomorrow on his sinuses. We ask for prayers, for a successful surgery, minimal pain and that whatever is going on in there is not related to Neuroblatoma at all! This has been tough on the whole family as the fears that come rushing back in and putting him through more surgery, poor guy he has been through so much. Will try to update as soon as we can.
Thursday, July 14, 2005 11:05 PM CDT I finally spoke with the ENT tonight and although he is considering surgery on his sinuses as an option he wants our pediatrician and our oncologist to exhaust all other tests and possibilites for his fever and discomfort. So we will be contacting the pediatrician tomorrow and the doctors at Duke as well. We will update as soon as we have any more info. Saturday, July 9, 2005 9:35 PM CDT Unfortunately being more settled in our concerns has not occurred yet! Nick had his appointment with the ENT this past week and the key we were hoping for did not fit. After reviewing Nicks' scans the doctor is not convinced that the fevers are a result of his sinus problems. So now the question to be answered is what is causing the chronic fevers Nick is experiencing? Thursday, June 16, 2005 8:47 PM CDT Sunday, December 12, 2004 11:27 AM CST The good news is things are going well, the bad news is we have not updated on Nick in so long and we apologize. Thursday, May 20, 2004 8:03 AM CDT I apologize for the very long past due update. Life has been busy and of course there are new changes and updates on Nick. His past bone scan for his spine showed that there was no fracture like suspected and he has been doing physical therapy exercises to help strenghten the muscles and reduce the pain. He seems to have obtained some relief with this. Saturday, February 7, 2004 6:40 PM CST Nick has recently been seen by the pediatric orthopedics at Brenners Childrens at Wake Forest Baptist Medical Center. His back pain continues to plague him, and he just recently had a bone scan to determine what might be going on. His most recent xrays do show he has some mild scoliosis. This of course will need to be watched closely as he grows. This unforunately is a possible side effect from the radiation he had. We will update as soon as we have some results from his bone scans. Friday, October 24, 2003 5:56 AM CDT Nick will be returning to Duke today for his echocardiogram and MRI of his spine. We are hoping for positive result or answers to his pain. Please say a quick prayer for him, during the MRI he will be required to lay perfectly still for up to 45 minutes. In the past he has had what were called quick scans which required much less time being still. This is hard for anyone especially an active 10 year old.
Thursday, October 9, 2003 10:12 PM CDT We are very overdue for an update! Please forgive us. Nick continues to do very well. He tried a new adventure this summer and joined the swim team! He started 4th grade this year and is enjoying school and really likes the teacher he has this year. Friday, March 28, 2003 9:46 PM CST Nick continues to do well and it is great to see this pattern occuring with his good health reports.
Thursday, January 09, 2003 at 07:49 AM (CST) Happy New Year! Nick's New Years resolution is to remain healthy for another year!
Monday, September 16, 2002 at 11:37 AM (CDT) Today we just completed our 6 month series of test and although we don't have final results of tests and bloodwork we did come home with great news. Friday, July 26, 2002 at 07:15 AM (CDT) Our summer continues to go well... but much too fast, as school will begin soon. Nick has had a blast this summer but he thinks the highlight of the whole summer is his receiving his pet turtle for his birthday. Nick continues to struggle with sinus/allergy problems and we are constantly working with the doctor to find the right fit of meds to relieve his symptoms. His work with the urologist continues as well. Nick did see a dermotologist this past week to have a suspicious mole taken off and biopsied. We wont have results for a week but we are staying positive. Thanks again for checking in on us and keeping us in your prayers. Friday, June 14, 2002 at 05:39 AM (CDT) Just a quick update to let you know that Nick is enjoying his summer and quite impatiently anticipating his upcoming birthday. Nicks most recent appointment with his allergist/immunologist went well. We came home with a whole boatload of new medicines and medicine combinations to try. Initially I think we may have found a successful combination. Nick will see the urologist next week and we are hoping we get some of those issues resolved soon.Please check back, we hope to update with new photos soon. Sunday, May 19, 2002 at 07:47 PM (CDT) Wow! It has been much too long since we last updated. The wonderful thing about that is that there is no major changes taking place! In fact this has been one of the healthiest years yet for Nick. It started off a little rocky, but since December Nick has remained quite healthy. While both his brother and sister struggled this winter with ear infections, strep throat and the flu Nick flew by without a problem. I think he missed less days of school for illness this year than he has since he started school 4 years ago. His scans and bloodwork this past workup were all good. He will no longer need to see the endocrinologist doctor until he starts to go through puberty. He still see's the imunologist/allergist doctor on a regular basis and we are planning on trying some new medications this summer. He has been released from seeing the gastro doctor at his last visit unless problems re-occur. We have another appointment scheduled with the urologist this summer and still deal with some issues there, but in general Nick is leading a fairly happy, healthy lifestyle of any 8 year old boy. School will be out soon and we are all very much looking forward to a fun summer. Nick will be attending a week long summer day camp at a science museum here in town. He is looking forward to learning all about being a JR GEOLOGIST! We also are looking at plans for him to attend a cub scout day camp here in town as well. Hopefully we won't take so long to update this site in the next few months, but we are just relishing in the miracle of our healthy little boy.
Saturday, December 01, 2001 at 10:37 PM (CST) With the warm weather we've had here in North Carolina it is hard to believe the holiday season is upon us! We are anticipating a wonderful HEALTHY holiday season this year. Nick is doing well and has survived the beginning of the cold and flu season unscathed. Nick is currently seeing a allergist/immunologist as he did deal with both a cellulitis infection and a staff infection this fall. His pediatrician was concerned his immunities weren't up to par but initial testing appears to be good.
Friday, September 21, 2001 at 04:03 PM (CDT) This week has been a tough one for Nick but he has held up like a trooper. Sometimes we wonder how he does it. Monday, August 20, 2001 at 08:46 PM (CDT) Nicholaus had his appointment with the urologist last week and initial tests appear to be good. We had some work to do with regulating bathroom usuage and have done that for a week. We will see the doctor again in one month. One issue discussed is that some of his urology problems may stem from his gastro problems. We are hoping all can be straigtened out soon. Saturday, August 11, 2001 at 07:55 AM (CDT) Nick had his appointment with the gastroenterolist and all went well. It appears after seeing this doctor that Nick is suffering from damage to his intestines and colon from the many medicines(narcotics), chemo and radiation he had during treatment. He was having alot of pain and difficulty with going to the bathroom. The doctor has put him on a strict regimine and medicine to help resolve some of the problems he is having. Sunday, August 05, 2001 at 04:45 PM (CDT) It is about time for another update so here it goes. We are beginning a whirlwind week or two of many scheduled appointments. The first appointment,last week was for his hearing and he continues to check out fine with his hearing. We now know he must suffer from very selective hearing. His grandmother stated he now has to listen to his mom and dad because the doctor says his hearing is great! This week we see the gastro doctor. Next week Nick will see a urologist. Please pray that these visits will go smoothly and that we can get some help and answers for some of the issues Nick is dealing with. Saturday, June 16, 2001 at 08:41 AM (CDT) It has been awhile since our last update but we don't have much more info except an appointment book full of more doctors appointments. Nick is enjoying the summer and complains only briefly when his day is interrupted to go to the doctor! He saw his pediatrician yesterday and that was our 8 yr old "well" child check up! Yes Nick will be 8 tomorrow, isn't that just a miracle! One of the results of this appointment was a referral to have a hearing test. Due to one of his chemo's causing hearing loss we need to regularly have his hearing tested. So far he has always checked out well but lately has presented with some problems. This could also be due to as the pediatrician stated,"an incredible amount of fluid" in his ears as a result of his allergies. The pediatrician also stated that he is showing signs of scoliosis. We are needing to watch this as he grows, which we hope will be soon as he is only in the 35% for his height. The issue of scoliosis could be a result of the radiation he had but we don't know for sure. Monday, May 21, 2001 at 08:57 PM (CDT) We heard from the doctors on Friday and received news... that for the time being we will live with! The spots on Nicks lungs are still evident and although this concerns us, we are being told not to worry. We will wait, watch and re-scan and hopefully these will truly be nothing. We will need to have some other follow up appointments relating to side effect from his treatment and bone marrow transplant. The first being a hearing test which will hopefully take place in the next week or two. We are also waiting to hear if he will need to see an endocrinologist due to his one kidney and adrenal gland being removed. This past weekend Nick had the privelege of participating in the local Relay For Life held here in town. The first lap of the walk is reserved for survivors. Nick was the youngest participant in the survivor lap. This was a wonderful and exciting experience, very moving as well. Check out the photo added! Monday, May 21, 2001 at 08:57 PM (CDT) We heard from the doctors on Friday and received news... that for the time being we will live with! The spots on Nicks lungs are still evident and although this concerns us, we are being told not to worry. We will wait, watch and re-scan and hopefully these will truly be nothing. We will need to have some other follow up appointments relating to side effect from his treatment and bone marrow transplant. The first being a hearing test which will hopefully take place in the next week or two. We are also waiting to hear if he will need to see an endocrinologist due to his one kidney and adrenal gland being removed. This past weekend Nick had the privelege of participating in the local Relay For Life held here in town. The first lap of the walk is reserved for survivors. Nick was the youngest participant in the survivor lap. This was a wonderful and exciting experience, very moving as well. Check out the photo added! Monday, May 21, 2001 at 08:37 PM (CDT) We got a call on Friday and the latest is ...news we will live with for the time being. The spots on Nicks lungs are still there but at this time we are watching and waiting and will re-check to see what they(the spots)decide to do! We need to have several follow ups for some side effects we are facing due to treatment and bone marrow transplant. We will be scheduling a hearing test, hopefully within the next few weeks and we are waiting word as to whether Nick will need to see a doctor of endocronology. We will keep you posted. Wednesday, May 16, 2001 at 08:32 PM (CDT) We still have no definite results from scans but initially things look good. Tuesday, May 15, 2001 at 09:03 PM (CDT) Well after a long day at the hospital we still have no final results of the numerous tests. We did get results of bloodwork and all that looks great so we are now waiting on results of his scans. They scanned Nicks' chest as a follow up on his problems this past winter, his abdomen and his pelvis area. Once again Nicholaus was a trooper. After having alot of trouble getting his IV in, he decided that his veins were scared of the sharp object and that they were just hiding. Thanks to EMLA the magic cream this too was as painless as possible. After it was all done and over he got to take his IV board home with a quickly made doctor kit to play doctor with his sister. You would think he'd have enough of doctors. We will be needing to follow up on some more tests hopefully getting some of this taken care of during the summer. Nick will need a hearing test and possibly some neuropshych testing to be done through either the school system or the hospital. Thanks for checking in on us and as soon as we have scan results we will share the news. Monday, April 16, 2001 at 09:10 PM (CDT) We are at that time again when the numerous tests are to be run to determine the status of Nick's remission. We will be going through the numerous tests and the infamous scan(pictures as Nick says). Please be in prayer that the scans will continue to be clear and that the spots seen in December remain unchanged or gone! The scheduled date for Nick's test is May 15th. As soon as we have any results we will update this page. Wednesday, March 21, 2001 at 08:52 PM (CST) New pictures of Nick playing soccer have been added to the photo album. After begging for a long time Nick requested from Dr. Graham the o.k. to play soccer and Dr. Graham granted his request. Mom reluctantly signed Nick up and now the adventure has begun. Mom struggled through the first game with fears and tears as each hard hit or fall took place. The second game was much easier and hopes are that as the season progresses each game will become easier. Yes, soccer is a contact sport and yes with only one kidney we need to be careful. Dr. Grahams thought is that at his age the sport hasn't gotten to rough for him to handle at this point. Please pray that this will be a good experience for Nick and that he will have a fun and safe soccer season! Monday, February 26, 2001 at 08:41 PM (CST) This web page has just been designed to keep family and friends updated on Nicholaus. We are pleased to inform everyone that after our scare in December things seem to be going well again! The latest tests showed everything back to normal. His bloodwork looked good and his lung x-rays were clear. He has had no symptoms or complaints to keep us worried!
Monday, February 26, 2001 at 07:00 PM (CST) This page has just been created. Please check back for additional updates.
Click here to go back to the main page. ----End of History----
He played on the JV soccer team and is swimming with the Varsity swim team. He has struggled with some pain out shortness of breath recently but he is getting a full work up and the doctors are making sure it has nothing to do with his lung function or heart defect. One possiblity is that it might be exercise induced asthma but he is getting a thorough check up just to be sure.
Thanks for checking in on us. We will try and update more regularly!
Nicholaus has made it to the majority of school so far this year. He is so proud of this accomplishment and when he ends a week with few or no absences he celebrates with cheers and a jig.
He has escaped the flu so far this winter but has had a rough week with bronchitis. Unfortunately he had a negative reaction from the antibiotic, but we got things under control and he is starting to feel better.
Nick finally got his hair cut for Locks of Love, it amazed us how long and thick it really was. He was also nominated by his school for a Human Service Award, being honored with a nice trophy and dinner.
The doctors are treating Nick as they would a patient with autoimmune disease, we seem to see some improvement with this.
Pictures are being updated... check them out!
Thanks for checking in.
Although all the procedures and tests have not given us any reasons for his illnesses we are learning to live with it. There is some speculation that this is just a long term result of all the treatment he had when he was young.
Before I end this update I wanted to share a few things with all of our family, friends and loyal supporters.
September is Childhood Cancer Awareness Month!
Click on these links to learn more:
CureSearch
www.curesearch.org
Lunch For Life
www.lunchforlife.org
A short video showing children fighting cancer:
http://www.youtube.com/watch?v=AGS4yE5v9rM
And the team of dads cycling across America to bring awareness to Neuroblastoma, as well as raise funds to help start another clinical trial, using humanzied 3F8:
http://www.graceoughtoncancerfoundation.org/loneliestroad/index.html
On a positive note Nick got a visit from a therapy dog today! It was awesome. The dog is a large golden retriever that is trained specifically to work with sick patients. The dog got in the bed and layed with Nick for a long time while Nick got to pet it and cuddle. What a great experience and the event put a smile on Nick that we hadnt seen all week!I will post pictures soon.
Nick was also able to actually get out of bed and walk a small way inside the room.
Small steps toward working our way home!
Thanks for the thoughts, prayers and guestbook entries!
The results of todays xray showed that the top part of his lung has collapsed a bit so we are hoping that we can get that remedied quickly.
Nick was able to get out of bed and sit in a chair for awhile but was in more pain than yesterday so he wasnt able to stay in the chair as long. We are not sure if that is a result of his lung being partially collapsed or not.
Please pray that he heals quickly and continues to have minimal pain.
We just want to thank everyone for the visits, cards and special treats! especially the CHOCOLATE!
The doctor came and talked with us around 1pm and let us know that he got several pieces of lung tissue but he isnt totally confident that he got an actual nodule that he was trying for. Unfortunately we wont have any results till late next week.
Once in our room(Brenners 923) it took quite awhile to get his pain under control. Thankfully once we did he has been much happier. He was in an extreme amount of pain and had a rough go of it for awhile. He is very annoyed by the chest tube but we are hoping for a good nights rest(ha ha) and speedy healing. Thanks for the thoughts, emails and calls. We do appreciate it!
Geesh... I hope they get it right before they operate on my son!
We will update when we can if this changes once again.
After not hearing from the hospital regarding our arrival time for surgery and then being told that he wasnt even scheduled for surgery there was a brief moment of frustration. After several more calls it was determined that they changed the date... they just failed to notify the patient! O.K. so instead of Thursday Nick will now be having his surgery first thing on Friday. We need to arrive bright and early at 6:00 am. Please keep Nick in your thoughts and prayers. When we are able we will update this site.
Nicholaus has been going to physical therapy now for a couple weeks and although they work him hard, he has enjoyed the activity and his therapist can really make him smile. His energy level seems to be improving some each day.
Unfortunately he is back on the homebound program with school again. The school system has not worked well with us in getting him on a part time status. We met his new teacher and she brought loads of work so he will be busy in the next few days! Although he does enjoy it!
Our spring break is almost over and we were busy with several doctor appointments. Nicholaus has seen the rheumatologist who put him on the new medicine when we were hospitlaized several weeks ago. The medicine seems to still be working and Nick feels so much better. She has recommended he have a few sessions of physical therapy. His joints are very tight and restrictive and she feels that if he gets those loosened up some he will have some relief from some of his pain.
We also saw his oncologist and Dr. Williams who have recommended Nick to only go back to school part time. Since it is spring break I will have to work on that when school resumes.
The next day we had two scheduled appointments with opthamology. These were to determine whether any signs of sarcoid were seen in his eyes. This wasnt too successful due to some uncontollable circumstances, as result we may be having another eye appointment in the near future.
Our appointment with the surgeon has been scheduled for later in the month in which we will schedule his lung biopsy. This unfortunately will result in another hospitalization for Nick. We will update once we have more info.
Please enjoy this Easter holiday and treasure these times for making memories with loved ones.
Please keep these warriors in your thoughts and prayers.
www.caringbridge.org/ny/kendall
and www.caringbridge.org/ny/penelope
They are having a difficult time in their fight.
Nick was hospitalized shows an indication that Nick may have sarcoidosis,
which is an autoimmune disease. This one indicator is not conclusive and more
tests and follow ups will take place. We have several appointments next week
and a possible lung biopsy in the future. We are still in the investigative
phase, but so far this is the most info we've gotten regarding his symptoms and
illness in the last 2 years.
Nick is not making it to school today but hopefully we can get a doctor appointment. After doing so well and attending school for a bit, we think he caught some of those nasty germs that he has been so shielded from these last few months.
Yesterday he spiked a fever as high as 104. After a lot of work we were able to get it down but it never got below 101.
He is quite discouraged as he was hoping to be able to go to school this week. I will update again once we see a doctor.
Thank you for all the well wishes! and attempted visits since we got discharged so quickly. Please continue to keep Nick in your prayers, that the medicine will continue to work.
Nicholaus has had scans and bloodwork and seen lots and lots of doctors. We have gotten any eye opening news or answers but we are still trucking along. He hasn't spiked a fever yet which is one aspect they are looking for. Not sure how much longer we will be here.
He was seen by a rheumatolgist who is going to try an anti-flammatory perscription medicine that may break the cycle of fevers and there was another test that they want to run.
We are at Baptist in room 902 in Brenners - come by for a visit if you can... Nick would love it. I will update again when I can.
Our oncologist has decided to admit Nicholaus to the hospital to run more tests, possibly redo some that have been done before and to attempt to get to the bottom of his issues. It will be strange to be inpatient again after so many years but will be well worth it if we get some answers.
Please keep us in your prayers as we once again face the medical world as an inpatient.
The doctors anticpates his stay will be 3-5 days.
But ... there is always another issue that pops up....
Our doctor was concerned by some other things plaguing Nick so he decided to check his thyroid and it is being a bit lazy. He was quick to start him on medicine which will begin today and hopefully we will see results within a few weeks. This can be one answer to his chronic fatigue.
There were some other questionable numbers especially with his alkaline phosphate levels. He was going to confer with the oncologist and we are going to redo bloodwork in about 1-2 months and see what changes have taken place.
Over the weekend we enjoyed the outragous couragous kids Christmas Party for kids treated at Brenners. It was alot of fun and all 3 kids enjoyed it but then we were unfortunately struck with the stomach bug. Thankfully it was very short lived. We ended the weekend attending our churches Christmas musical. It was an awesome time to spend celebrating the season. Now if I could only get those decorations up!!
We will be doing Nicks cardiology work up after the holidays.I will update if and when we have any news.
We have an appointment with a pediatric cardiologist in the near future. I am sure there will be further testing and we will hopefully get some of our many questions answered.
Please be in prayer as we travel this new road.
Tuesday we will be at Baptist most of the day having tests done. We will be having an echo on his heart as well as a lung function test. Please keep Nicholaus in your prayers. On Thursday, Nick's sister Kela will be having all 4 of her wisdom teeth pulled. Looks like soup will be a staple at our house this week.
Please continue to pray for healing for Nicks body. Let us know you stopped by and sign the guest book. Nick enjoys reading your messages.
We as a family are struggling with the fact that cancer certainly does not end when the treatment ends. The very sad truth about cancer is that it does not end when treatment is over despite the fact that the larger world believes it does. And for some survivors there is a life time of health concerns and battles. Just as it
was for Nick during treatment he is being hit w/one complication after the other in the form of late effects. It is compromising his quality of life,physically and mentally. It's so hard when he just wants to live like any
other 13-year old.
Every day he gets a shot of growth hormone, and next month he is having surgery to repair a hernia.
Please keep Nick in your prayers so that he can continue to fight in this battle!
Please take time to think of these precious warriors and lift a prayer if you can. These families are going through tough times right now!
Christi and family are in dire need of prayers as her parents say goodbye to their angel.
www.christiThomas.blogspot.com
Penelope is showing huge disease progression.
http://www.caringbridge.org/ny/penelope/
Kaitlin's journey to heaven is close.
http://www.caringbridge.org/wa/kaitlin/
Tomorrow we will be getting his back brace. I am hoping that this next adventure in his life will be met with his fighting spirit. Nick is very encouraged when you sign his guestbook so if you have time please drop him a note.
Now that the ordeal is over Daniel was able to give us a few laughs over the whole situation. Leave it to big brothers to make a joke out of the whole situation!
Another precious warrior child seems to be losing her fight with this battle. It pains us to see so many children suffer. Please offer your prayers and support if you can. You can read her story at www.christiThomas.blogspot.com.
We are still hoping to gather with others close home here in Winston to do an Alex Lemonade Stand for Neuroblastoma research.Please keep your eyes and ears open as we would love to have friends and family come out for support!
Our plans are to have it in October.
On another note... another soldier in this battle of childhood cancer needs our fervent prayers. You can check out the blog at http://www.christithomas.blogspot.com/
Thank you to our friends and family for your continued prayers,love and support.
Please stop by and sign the guest book. Nick loves to hear from friends and family.
you gotta let the kid have a little fun! This is possible due to the radiation Nick had during his cancer treatment.
We have run into a few other issues though, so the barrage of doctor appointments continues! We will be returning to the oncology clinic for a follow up and a check up on his heart. We now need to see the orthopedic doctor as Nick is showing signs of scoliosis progressing and the pediatrician discovered either a hernia or hydrocele or both which we need to have checked out further by a specialist which may result in possible surgery.
So we will start school hoping for the best but continuing to have regular doctor appointments.
I please ask that you keep Nick and us all in your prayers.
We are continuing to keep Nick off his meds except for his growth hormone. He has adjusted well to getting a shot everyday. He still is running some fevers but not as frequent and not as high. His energy level has improved somewhat.
Not sure if anyone watched the documentary A Lion In the House that was on PBS. It was quite realistic to what really happens and the emotions that we deal with. Thankfully we made it through those times and Nick our little miracle is a survivor.
Nicholaus was present for some of the filming of the show. I am not sure if he is in any of it for sure but it should be a good show anyways and will give some info on the camp Nick attends each summer.
We head back to the ENT today. Not sure what is in store but will update if there is anything new or different.
Doctors are considering some sort of toxicity build up causing the fever....fatigue and various other symptoms. He has been at camp this week.... www.victoryjunction.org
Reports are that he has done o.k. We will monitor his fevers this next week and follow up in another week with the doctor.
We are all glad that summer is finally here. Nick will be holding a lemonade stand to raise money for pediatric cancer research. He and his father built a stand and we have had a local grocery story offer to donate supplies. We will post the dates as soon as everything is confirmed.
Thanks for checking in.... please sign the guestbook
If all goes well Nick should go to camp again this summer at Victory Junction Gang Camp. www.victoryjunction.org
He is also planning on participating in a national event raising money for cancer research by holding a Lemonade Stand.www.alexslemonade.org If you are in the area of where we live it will be great to have you visit our stand.
We are hoping to know before the end of the week whether this most recent surgery will give us some answers to the struggles Nicholaus has had over the past year.
It is with much shock and sorrow that we have had another neuroblastoma(NB)child pass away. Nick Snow a fellow NB patient who we got to know via email. He was a fighter and we followed his example as a hope for overcoming all that this dreaded beast gives. Please keep his family in your prayers and visit his page to see what an awesome warrior he was.
www.caringbridge.org/ca/nicksnow
Nicholaus' surgery and biopsies will be tomorrow. Surgery will be sometime after 12:30. He needs to report to the hospital at 11:30. The fun part will be getting him through the day without eating! No eating or drinking after midnight tonight.
Had a rough morning dealing with insurance issues~ got word it hadn't been paid and we had fears of cobra being dropped(cobra can and will do that) but after spending the morning on the phone got word that they had gotten the check but had not posted it yet. Whew! Just love those little scares.
Tomorrow will be a long one I am sure! We will update again as soon as we know anything.
A few of his ideas are to get an accurate kidney function test. Nicholaus only has one kidney due to the cancer invading his other one. We are going to get thorough testing done to make sure his one and only is working appropriately. He is also going back to the sinus issues. He believes there may be more there than what has been tested already. Feels like we are coming full circle with that one but if they find the cause for his illness and can help him get better it will all be worth it. This has been a rough week for Nick as he has caught a cold in addition to everything else that is going on. We are trying to take it easy in between his school work and he thoroughly educating me on STAR WARS!
Please stop by and sign the guest book if you can. We all get so much encouragement from hearing from good friends as well as cyber friends.
His latest blood work showed some concerns but no big red flags. We now have an appointment with the help of our wonderful pediatrician with an immunologist who plans to dig a little deeper in looking at his t-cells and testing his bone marrow for answers to what might be going on. We will be heading to Sanford, NC (wherever that is! never heard of it!) to see this doctor on Thursday.
We are excited that there seems to be a doctor willing to look a little deeper into some factors, but frustrated that it is so hard getting someone to do it.
I have a CD of Nicks latest scans and a boatload of paperwork and medical records that I will be hand delivering to this doctor when we go.
Please keep us in your prayers and we will update after this next appointment.
Children's Neuroblastoma Cancer Foundation for the third year, is doing Lunch for Life. It is to help raise funds for a deadly childhood cancer. This is the cancer that Nicholaus was diagnosed with and changed our lives forever.
All that is being asked is for you to "give up" one lunch and donate that money to Lunch for Life. The premise of this campaign is that one person donates $5.00 (the cost of a lunch) and then asks five friends to donate $5.00. Those five friends ask five friends, and it just keeps going. This campaign has been very successful in raising money to fight neuroblastoma, a very deadly and very underfunded
childhood cancer. This is basically a grassroots effort by parents of neuroblastoma children to raise money.
Nicholaus was diagnosed with neuroblastoma in 1995. Since his struggle began, we have been greatly impacted by
the many other families who are fighting this disease. Many relationships have been formed via the internet and hospital visits. Nicholaus is currently winning his battle,with this disease although we deal regularly with long term issues, but sadly most children with neuroblastoma lose their battle.
I would like to share with you this easy opportunity to help offer hope!! If you are interested in donating your "lunch" please go to LUNCH FOR LIFE www.lunchforlife.org. Find Nicholaus Chases' Christmas tree and donate in his honor. The exciting part is that for every $5.00 donation he gets in his honor he is entered for a chance to win an all expense paid trip to Disney World
(and other prizes). Your $5.00 could send him to Disney. Thank you and please sign his guestbook so he knows you dropped in!
We just want to take a moment to let our friends know how thankful we are for your support and prayers. We hope everyone has a blessed Thanksgiving.
We heard from the endocrinologist yesterday and Nick is definietly not producing enough of the hormone necessary for growth. As his sister states,"no kidding" The doctor would like to wait until we determine what his other issues are before we start growth hormones.
We return back to the GI docs tomorrow and will get results of initial tests. Not that we hope there is a problem, but we are hoping for some answers so we can have a plan to getting him to start feeling better.
Thank you for checking in on us and please keep us in your prayers.
Although we don't have definite news we do have more info to go on. The test run by the infectious disease doctors at Duke revealed elevated markers indicating that Nick tested 85ositive for inflammatory bowel disease. What that exactly means will require further testing. Hence our appointment tomorrow with GI at Baptist. This past Monday Nick went to his follow-up appointment with the endocrinologist to determine how his growth is going. Unfortunately not as good as we had hope for. The doctors are recommending putting Nick on growth hormones although Nick isn't too excited about this. It will require taking a shot daily. We are going to wait until the fevers and other issues are settled, so we have plans to recheck again in March.
As soon as we have info from the GI doctors we will update again.
We have been back and forth several times to Duke in the last month. We have had numerous tests run and we still are not any closer to determining what is happening with Nick. Blood work generally looks good... His sed rate is elevated and his C reactive protein is elevated as well. The rescan showed no change in the spots on his lungs and they feel it is scar tissue or something other than malignancy. He is still radomly running fevers, feels rotten most of the time with stomach and headaches and just general pain all over. He is slightly anemic. We are being followed now mainly by infectious disease who is running every test imaginable. His VMA-HVA is being tested but we don't have results back yet.
Fall soccer season has ended for our household so we were able to spend some fun family time today and get our minds off doctors and appointments. We went to the Renaissance Faire and had a great time. Nick is exhausted and worn out and resting on the couch now, but still demanding I finish his halloween costume.
We want to thank everyone for your prayers, care and concern for Nicholaus. We will update as we have more information.
Please keep us in your prayers.
The sinus surgery Nick had earlier in the month went great and his recovery has continued to go well. The doctors found no reason within his sinuses to cause his fevers which we have realized since they still continue.
Nick started school two weeks ago and is now in middle school in the 6th grade. Unfortunately he has already missed 4 out of the 14 days. Hopefully this won't continue throughout the year.
September is Childhood Cancer Awareness month. See if there are any events in your area to support,while promoting the awareness that children do get cancer and that we need hope out there to find a cure.
We are hoping to put those cares and concerns aside as Nick will be going to the Victory Junction Gang Camp tomorrow for a week. We are hoping he can feel good enough to attend this next week and enjoy experiences and challenges with other children who have also had or are currently dealing with a diagnosis of cancer. Check out their website. This is an awesome place! www.victoryjunction.org
Please keep us and Nick in your prayers. Please pray that we can find answers to his fevers and that he can soon feel better.
Another long overdue update!
Things have been going well but the concerns never leave. This past spring Nick has had a rough go. He began running fevers with minimal symptoms and began missing 1-2 days of school a week. We did a work up and found that things looked good with his scans and blood work. Not finding answers our oncologist sent us for scans of his sinuses. The culprit is there. Major problems. We have gone through 2 rounds of antibiotics and are still not gettting the problems resolved. We are now on round 3 with an appointment to see a specialist in 2 weeks.
Nick was also in the hospital a week ago for initial growth hormone testing. The test results were good but that doesn't answer the question of why he is not growing. We will continue to follow up on that.
Again thanks for checking in on us. Please keep Nick in your thoughts and prayers as we try to deal with some of the issues at hand.
Nicholaus continues to do well. He still struggles with growth issues but he deals with it like a trooper. We have been told he may also have some bone density issues so we are trying to get as much calcium in him as possible without going the medicine route at this point.
Nick had the wonderful opportunity to attend the Victory Junction Gang Camp in North Carolina this past summer. It was a wonderful opportunity and he had the time of his life, and is hoping to get a chance to return. We dropped him off at camp that looks like a Nascar racing wonderland. This was hard as it was the first overnight camping experience that he had without either mom or dad there. He survived and so did MOM!We are hoping to add some pictures of him with Richard Petty soon.
Nick has gotten off to a good start in school this year. He is currently in the 5th grade. His yearly run of tests proved to be good and again he remains NED! He is being followed closely by a endocrinoligist for his growth and bone density issues. Thank you for checking in on us and if we don't update again before.... Have a very Merry Christmas.
During Nicholaus' most recent physical we discovered that his height is continuing to drop off the charts for children his age. This too may be a long term side effect of his chemotherapy and radiation. He will be seeing an endocrinologist next week for further evaluation. He also failed his hearing test in one ear. Up to this point he has not had any effect of the chemo affecting his hearing but we now will be following up on that as well.
We did have a bit of a scare last week... Nick had an allergic reaction to his Tetnus shot. Nothing major just another little bump in the road.
School is almost over this year for Nicholaus. He has had a great 4th grade and a wonderful teacher. He has grown and matured so much and his grades have improved tremendously. We can't thank his teacher enough for all his support and encouragement for Nick.
We are hoping for Nicholaus to get a chance to go to a new camp for children opening up here in North Carolina. We have applied for Nick to attend the Kyle Petty Victory Junction Gang Camp. We are hoping this will be a wonderful experience for him.
IMPORTANT ANNOUCEMENT
We am joining with many other neuroblastoma families in an effort to help Nicholaus and all the others who are fighting this horrible disease. Neuroblastoma accounts for about 7 percent of all cases of cancer diagnosed in children. But, it accounts for 15 percent of all deaths from pediatric cancers. For children who are diagnosed after one year of age there is no known cure for this disease. The survival rates are pathetic.
Pediatric oncology research receives almost no funding. The NCI granted pediatric oncology $30 million dollars last year. This was to research all types of juvenile cancers. Breast cancer alone receives this much money from NCI. Of this $30 million granted to pediatric, neuroblastoma research gets a very small percentage.
We are asking each of you to do something very simple, but it can have a dramatic impact. It is called Lunch for Life. The concept is that each of you donate $5.00 (about the cost of a lunch) to neuroblastoma research. Then, ask five of your friends to do the same and to ask five of their friends.
You can designate your donation to the Children's Neuroblastoma Cancer Foundation in honor of Nicholaus Chase in one of the following ways:
* online (it is a secure site) by clicking on this link LUNCH FOR LIFE
* by phone -- the number is 1-866-671-2623
* by mail -- the address is
CNCF
PO Box 6635
Bloomingdale, IL 60108
We appreciate all the love and support you our friends and family give to us. We know we are blessed as Nicholaus is an exception and miracle due to the fact that he is surviving this dreadful disease. Help us make it a reality to many more families.
Nicholaus had his second appointment at Duke's long term survivor clinic. We are so pleased to have transferred his care there and feel he is getting the care he needs for dealing with some of the long term issues children who survive cancer deal with.
Once again Nick was a trooper. He gave up alot of blood for several tests that are being run. He had an x-ray of his back as well as one of his wrist. These are all preliminary looks at possible spinal injury due to radiation and for growth issues. Currently Nick is only in the 6th percentile for height. We will be returning soon for a possible MRI and an echocardiagram for his heart defect which is also a side effect of his treatment.
IMPORTANT ANNOUCEMENT
We am joining with many other neuroblastoma families in an effort to help Nicholaus and all the others who are fighting this horrible disease. Neuroblastoma accounts for about 7 percent of all cases of cancer diagnosed in children. But, it accounts for 15 percent of all deaths from pediatric cancers. For children who are diagnosed after one year of age there is no known cure for this disease. The survival rates are pathetic.
Pediatric oncology research receives almost no funding. The NCI granted pediatric oncology $30 million dollars last year. This was to research all types of juvenile cancers. Breast cancer alone receives this much money from NCI. Of this $30 million granted to pediatric, neuroblastoma research gets a very small percentage.
We are asking each of you to do something very simple, but it can have a dramatic impact. It is called Lunch for Life. The concept is that each of you donate $5.00 (about the cost of a lunch) to neuroblastoma research. Then, ask five of your friends to do the same and to ask five of their friends.
You can designate your donation to the Children's Neuroblastoma Cancer Foundation in honor of Nicholaus Chase in one of the following ways:
* online (it is a secure site) by clicking on this link LUNCH FOR LIFE
* by phone -- the number is 1-866-671-2623
* by mail -- the address is
CNCF
PO Box 6635
Bloomingdale, IL 60108
We appreciate all the love and support you our friends and family give to us. We know we are blessed as Nicholaus is an exception and miracle due to the fact that he is surviving this dreadful disease. Help us make it a reality to many more families.
We are officially transferring Nicks medical care to the Duke University, Long term cancer survivor clinic.It is truly a miracle and milestone that Nick is now among the ranks of long term survivors of neuroblastoma.Please continue to remember Nick and do all you can to support cancer research. There are many children fighting daily to win the battle against neuroblastoma.
Nick saw his allergist today and we are feeling confident that we have found the right combination of medicine to keep his sinus problems under control.
We are sad to find out as well today that another relative in the family has come down with neuroblastoma. Suzi's cousins' grandson was just recently diagnosed with stage IV neuroblastoma. We are hoping to be a support for them as they fight this battle and we pray they win as Nick has! Lift up prayers for Cody when you are praying for Nick please.
Due to the fact that Nicholaus is 6 years(YOU HEARD THAT RIGHT 6 YEARS) out of treatment we now only need to see the oncologists 1x a year! The longer Nick stays no evidence of disease the better his chances get by year on not having a recurrence. Praise God for healing!
Nick did just recently suffer from a bout of shingles but not a serious one. Unfortunately this is just one of those things that we will encounter due to a weakened immune system.
Due to the side effects of some of the chemo Nick had, he is at risk for heart problems so today he had an echocardiogram to rule out any problems. Although we don't know the results yet we are continuing to trust in Gods blessings of good health. Again thanks for checking in with us. Please stop by and sign the guestbook.
This holiday season as you enjoy the joy it has to offer I would ask that you take a moment to check out a holiday tree where you can purchase an e-ribbon HONORING Nicholaus' fight against cancer. -please have all ribbons sent to Nicholaus(if you need an address please email us)THANK YOU.
ALL PROCEEDS GO TO RESEARCH FOR CHILDHOOD CANCER!
http://www.candlelighters.org/2001holidaytree.stm
Please also take a moment to leave a message to Nick in his guestbook.Again Thank you for checking in on us and Have a special holiday.
Monday Nick had three doctors appointments! Yes three! the good thing was getting them all done on the same day the bad thing is that it makes the day extremely long. We saw the gastroenterologist and things are improving with Nick and he will take the medicine he is on for one more month. We also saw the oncologist and everything continues to go well for Nick. We are continuing to watch the "stuff" in his lungs but Dr. Chauvenet strongly feels there is no malignancy there. The final doctor we saw was the endocrinologist. Our main purpose for seeing him was to determine if the one adrenal gland Nick has is functioning properly. In previous scans it was noticed that his remaining adrenal gland has some calcification on it and we needed to run some tests. This was the most difficult part of the whole day. Nick needed to be stuck 5 times for blood draws. This is usually not a problem for Nick but he was dehydrated and the nurse had trouble accessing his veins. Needless to say Nick wasn't happy! When we have results from these tests we will let everyone know!
Thanks again for checking in on us. We appreciate your continued love, support and prayers.
On another note Nick decided to keep mom and dad on their toes once again by needing to visit the ER this past weekend. Nick complained of leg pain(saying he pulled a muscle)Friday after school. By 7pm that evening he was running a fever of 103.5 causing much worry and alarm. After visiting the ER we have discovered that he had a cellulitis infection in his leg. With antibiotics now onboard he is on the road to recovery. We often wonder, when will the worries end and slowly come to the realization that he may need special medical attention for a long,long time. Thanks for checking in on us and please leave a note for Nick in the guestbook.
Currently Nick is feeling good and we are of course still concerned about the spots in his lungs but are continuing to monitor any changes that might occur.Our next visit with the oncologist will be in August, a September appointment with an endocrinologist and we are still waiting on dates for an appointment with a urologist and a gastrologist. We are trying to determine if there are some long term side effects occuring as a result of his treatment. Please continue to remember Nick
and pray the spots in his lungs will not develop into anything serious and that his spirits will continue to be positive with all the appointments. Thanks for checking in on us!
This past weekend Nicholaus had the privelege of participating in the area Relay for Life. The first lap of the relay was reserved for survivors, Nick was the youngest participating survivor in the walk but it was a wonderful experience and a moving one as well. Check out the new photo of him at the Relay!
The tumor board will be meeting on Thursday and we hope to hear something on Friday. We will update as soon as possible.
Friday will be an exciting day for Nick, and us as a family as well, as he will be walking in the survivor lap in the Winston Salem/Forsyth county Relay for Life. This is a significant milestone for him as this month marks a 5 year anniversary.
Another concern for you to keep in prayer is the long term effects his treatment has had on his teeth. Two years ago Nick had extensive dental work done and unfortunately we are at that point again. Thursday, April 19 will be the first of three procedures Nick will have done on his teeth which continue to suffer from the effects of chemo and radiation.
The doctors still don't have a clear explanation for what happened but think it was possibly some sort of fungus or virus.
Our next cat scan is scheduled for May.Hopefully we can avoid any emergencies or scares until that time.
Thank you for checking in!