History

Thursday, April 5, 2012

This time of year I always find myself in a comtemplative mood. It was 8 years ago on good Friday that I insisted the on-call ENT do something about the lump that was growing above Chris' ear. The regular ENT had put him on antibiotics and taken pictures to see if it was getting bigger. They thought it was maybe a bone infection. They wanted to wait 2 weeks to see what it was doing. I think I waited a week and was sure that it had doubled. The on-call ENT that Friday wasn't the best with kids. He assured (or was it patronized) me that nothing was wrong with Chris because he was running around the waiting room. But he sent us for xrays just to shut me up. The xray tech told me he'd never seen anything like it. On xray it looked like his cheek bone was 'moth eaten'. They took many xrays and re-calibrated the machine trying to get a better look. We were eventually sent home to enjoy our weekend with a biopsy scheduled for Monday. It was a whirlwind from there. They called me Wednesday afternoon to come into the office for results (bad sign). They had made us an appointment with an oncologist for the following morning and on Friday the oncologist had Chris go through a whole barrage of 'staging' scans. That Friday would be the first night we spent in the hospital. It was also later that evening they told us that Chris had neuroblastoma and it was already at stage IV - the worst it can get.

8 years later 100,000 other children have also been diagnosed with cancer. More than 20,000 have lost their fight.

Unreal. But it is real. Things never go back to the way they were before. As good as drs are they still can't explain why a child that has 'good' tumor characteristics doesn't always survive, but someone like Chris with all the bad markers, and a relapse are still here 8 years later. Don't get me wrong quality of life for Chris is amazing. Tomorrow isn't promised, but than again it isn't for anyone, we just have the benefit of realizing that. My heart aches for those that have passed away. It seems to go against the order of life for children to suffer so.

Contemplation aside things are going pretty well. Kids are on spring break and enjoying themselves. I'm enjoying the extra time in the evenings of not having to go over homework,etc.

Chris had his yearly follow up with cardio. Mixed results. His heart function levels have dropped a little since last year, but not enough to do anything about it. Not even enough to prompt us to come in earlier than 12 months from now. We follow up with audio on his hearing aides/hearing test next week. Endocrine and Oncology isn't until the summer.

Breanna is still maintaining with her asthma meds. Hasn't had to make any emergency trips to the dr. :)

Spring is in the air and it's got us making plans for all the fun things we want to do in the warmer weather.

Thanks for checking on us and I hope you all are enjoying this weather also.

Tuesday, February 28, 2012

It's been too long again, but I do have new pictures to share! Here's what's been going on with us:

*Pictured Above is Chris with his new(ish) dog. We rescued Bonnie in October and he loves to take pictures of her and show everyone. Chris looks bald in this pic, but it's just light colored hair trimmed short. See how tall he is getting!

*Breanna on the right with her beautiful smile and freckles!

*Christmas was great. We enjoyed spending time with friends and family. Kids seemed happy with their gifts.

*For Christmas the kids were lucky enough to get a kinect to go along with their xbox. Its really fun and surprising how much it is like excercise! I had to force them to take breaks after Breanna started wheezing and Chris complained of pain in his chest. (Now they take more breaks and seem to do ok.)

*Breanna had a great bday. Shes 8 now! She had 3 girls spend the night and they had a blast.

*School year is half-way over and things are going pretty good. We are still tweaking the implementation of Chris' IEP to give him what he needs. He's really made great strides in reading. I'm so proud of him. He reads at bedtime with little prompting from me.

*Breanna got perfect attendance for 2nd qtr! She's a book lover too. :-) Everytime we go to the library we all leave with an armful. :-)

*Breanna is preparing for a school play. They are doing Annie. She is constantly singing the songs. Too cute!

*Breanna went to the asthma dr and got a great report. Best she's had since she started seeing him. We were actually told to follow up in 6 months (not the usual 3 or 4!)

*Chris' endocrine appointment went great. He's now back on the growth chart at the 5or height (126 inches). Dr is very pleased. The bloodwork shows we need to adjust his dose with all the growing he's done in the last 8 months. We are to follow up in 4 months (but it will be 6 because the dr is booked solid).

*We don't have to go back to NY for scans until after school is out for the summer! Chris does follow-up with Cardio next month to make sure the meds are still keeping everything in top shape.

*Chris is still doing cub scouts. Things slowed down for the holidays but are starting to get back going. Hoping for some more campouts and badges in the next few months.

*Duck Hunting! Chris went duck hunting last weekend with some friends he met through the Delta Waterfowl Association. They had the duck he caught last year mounted for him and presented him with that last week as well. He tells me he caught 3 ducks, brought some home to cook, having one mounted and lost one in the woods. It was a great experience though and he loved it.

*The weather here has been beautiful. I actually had to turn the AC on the other weekend when it got to near 80 degrees and stuffy in the house. It hasn't been really cold all winter but it does bounce from chilly to warm every other week.

Well that's it for now. Hope everyone is doing well.

Linda

Thursday, December 22, 2011

Happy Holidays and Merry Christmas! The kids are out of school till next year and are counting down the days till Christmas. We got a full size REAL christmas tree this year, for the first year since Chris got sick 7 years ago! It looks great and the kids had a blast picking out ornaments (had to buy more because I had been using a small 48" tree) and decorating it. The outside of the house still needs to be done, but we will have to see how time works out. We've been to a few Christmas parties, made Christmas cookies and ornaments, done most of the holiday shopping and spent some time relaxing with some holiday movies. I've even got most of the wrapping done! I'm loving the fact that with Christmas falling on a Sunday this year I get the day before and the day after off! I'm looking forward to spending time with the kids.

The kids are doing great. Mostly staying out of the dr's office except for the regularly scheduled checkups. Breanna is on track with the asthma/refluct maintenance and Chris got a clean bill of health from NY! Follow up in 6 months for the next check. Dentist found 2 little cavities in Chris and got those fixed right up (his teeth are more prone to issues due to the chemo). Neurology is stepping him off his seizure drugs and 'fingers-crossed' he won't have any problems with that. On the endrocrine front he is GROWING. 5cm in 6 months on the NY charts. We go back to the endocrinologist end of January to see where he is on her chart (the official measurement) ;) He's doing pretty good with the shots and it's become a routine. This is the first growth spurt he's had in years. This helps put him back on the bottom end of the growth charts and gives me a reason to buy him some new clothes. :)

2 weeks till Breanna's birthday! Hard to believe how quick they are both growing up. Hope you all have a great holiday, enjoy spending time with your family, and remember those less fortunate - whether it be in health, wealth or spirit. I am grateful for today. For my wonderful friends and family and my children. I wouldn't want to be anywhere else. It was 6 years ago yesterday Chris had his relapse surgery. WOW. Nothing in life is guaranteed nor is tomorrow promised. So that leaves us to embrace and enjoy TODAY. Thank you for checking on us and I hope you have a wonderful Christmas.

Thursday, November 3, 2011

November

Time for an update! The school year is in full swing. The kids have completed the first 9 weeks. Breanna got A-B honor roll and has joined the drama club. They've only met 2 or 3 times, but I think she will enjoy it. Chris is doing ok with school. We finally got a plan in place to give him the extra help he needs. He's got a word processor that he uses for taking notes and any long writing assigments/tests/etc. He was diagnosed with dyspraxia in the spring. Basically its a muscle weakness/fine motor skill problem. If he tries really hard he can have legible handwritting, but he strains the muscles so much that it won't last long and it requires so much concentration that he can't pay attention to what the teacher is saying and take notes at the same time. I'm pretty sure this can be chalked up to a radiation after-effect but the cause doesn't really matter. The word processor gives him confidence and allows the teacher to be able to read what he's written. During the IEP meeting I also discovered that he was taking out his hearing aids in order to take a computer based test (so he could put the ear buds in). I said I didn't think that was a fair assessment and there had to be some other way to do this. The teacher mentioned that he scored significantly lower on this test than on verbal ones (where he keeps his aides in). They hadn't considered that removing the hearing aids for this test would be an issue, but are going to work with the hearing teacher to figure out something better.

Chris joined the cub scouts and is a weblo. We are still learning what this means but for now he's looking forward to some campouts. We've got the first one this weekend.

On the medical front Chris follows up with Neurology this week. This is the dr that monitors the seizures. There was discussion last time that what he had probably wasn't absence seizures but partial complex seizures. OK, sure. No idea what all that means, he's been taking meds for 5 years now and I haven't noticed any 'episodes' in probably 4. NY trip coming up before thanksgiving for scans. Should be a short trip up and back. Trying not to stress about those (scans are always stress inducing regardless of how long things have been good). Instead we are making plans for Thanksgiving and Christmas and campouts and all those fun things.

We went to the fair last weekend and Chris was so excited that he is now tall enough to go on the bumper cars by himself (gotta be 48 inches). Definitely cool. :-)

Breanna went back on meds for her reflux and is doing better. She doesn't get sick everytime she eats now and hasn't had to go to the school nurse in a few weeks.

Thanks for checking on us. I hope your fall plans are as fun-filled as ours.

Linda

Thursday, September 22, 2011

September 22nd

September is Childhood Cancer Awareness Month. I want to share some ugly facts (courtesy of the People Against Childhood Cancer, http://curechildhoodcancer.ning.com/page/facts-1) and I'll update on us below.

ŚOne in every 330 Americans develops cancer before the age of twenty.

ŚOn the average, 36 children and adolescents are diagnosed with cancer EVERYDAY in the United States (around 46 per school day).

ŚThe incidence of invasive pediatric cancers is up 29n the past 20 years.

ŚThe causes of most childhood cancers are unknown. At present, childhood cancer CANNOT BE PREVENTED.

ŚChildhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region. In the United States, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65 years.

ŚCancer is the LEADING CAUSE of death by disease in children under the age of 15 in the United States.

Ś1 in 4 children diagnosed with cancer will die

ŚThe average age of death for a child with cancer is 8, causing a child to lose 69 years of expected life.

ŚCancer kills more children than AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined.

ŚDespite these facts, childhood cancer research is vastly and consistently underfunded.

ŚIn 20 years the FDA has initially approved only one drug for any childhood cancer - 1/2 of all chemotherapies used for childrens cancers are over 25 years old

These facts still sicken me just to read them. Its been 7 years since I became personally aware of childhood cancer and the cold hard facts haven't changed. It seems I know more children that have lost their battle to cancer than those that have won. I'm not going to add a link and solicit that you donate money (yes money will help bring about new treatment options for soo many children that are and have yet to be diagnosed - see the PAC link above for some charity ideas). But I wanted to share some figures to help open your eyes to some information you might not have known.

Today is the last day of summer. The kids have been back in school for a month now. I wish it had been a smooth transition, but thats not the case. The district built some news schools and rezoned everyone and we are in the new schools zone. It seems that this means we have a group of faculty that hasn't all worked together before. New processes instead of the 'tried and true' approach. I like the school. My complaint would be that they aren't as organized as I would have liked (for example having seen or at least received Chris' IEP before the end of the first week of school - they did know he would be going there, or when the school called me at work the first day to see what bus they should ride home). But we will get used to it. They will get used to it and I'm sure as time goes by the faculty will establish their own routines that work smoothly. The IEP issue has been a rocky point. Making sure the teachers have seen it, he's getting the services that he is supposed to etc. We're not where I want to be yet but we seem to be making progress.

Gotta love the begining of the school year. Breanna has had a cold for the last 2 weeks. I think her reflux is acting up and she has been anxiety prone the last 2 weeks as well. Dr's appointment tomorrow to see if we can get a handle on it all. Chris had to go in to see his gp for the last of his catch-up immunizations. He cracked me up talking to the dr. The dr was making small talk and Chris was explaining how he's a pro at taking pills and chattering away, than he looks the dr in the eye and says "Now lets get down to business". His endo appointment this summer went well. He grew an inch and a half in the first 3 months on growth hormones (after not growing at all in the last 2 years). His new complaint is some mild neuropathy in his feet in the evenings. I'm betting its related to long term effects but we'll discuss it with the team when next we meet (November timeframe).

And in other BIG news Chris turned 9 a few weeks ago. Amazing. Wonderful. Outstanding. To see how far he's come is something else. We celebrated big time. Went camping the weekend before, and had a sleepove party with friends the following weekend.

Thanks for checking in on us.

Linda

Wednesday, July 13, 2011

It seems the summer is halfway over already and it just started. Really the kids have been out of school for 6 weeks already. Chris completed 3 weeks of math tutoring the school district provided him. Both kids just got back from a week at Camp Happy Days. They had a blast. Parasailing, tubing, rock wall climbing, arts and crafts and tons of fun packed into a week. I'm waiting to see the video from the talent show. I hear Chris and Breanna were a riot. It always surprises me when I pick them up from camp and they are both very hoarse. Despite that they still talked non-stop all the way home (about an hour and a half drive home).

On the medical side Chris had a oncology appointment last month with the local hospital. They are happy with how he looks and want him back in 9 months. He goes in to see the endocrinologist next week and that should give us a good idea how the growth hormone shots are doing. And Breanna... she came home from camp covered in bruises. She had a big one (4 inches maybe) on her back from where she fell off the bunk bed ladder and landed on a trash can. It didn't seem to ruin her week though.

Well that's all for now. Hope you all have a great week.

Linda

Wednesday, June 1, 2011

Oops. I wrote an update in May and forgot to post it. I'll leave it at the bottom of this one. Last Friday was the last day of school. I can't believe that in the fall Chris will be starting 4th grade and Breanna 2nd! Time sure flys. We had a great Memorial Day weekend. I bought a pool on Friday. It's an above ground frame set pool, gotta take it down in the winter, but it was cheap enough that I could make it happen. It's just deep enough to come up to their chins and the kids have been having a blast in it. We set it up Saturday. Sunday we had a cook out and the kids swam most of the day. Monday was more swimming and a cook out over at my brothers place. Gotta love 3 day weekends.

The NY trip May 18-20 went amazingly smooth. Things just clicked. Everybody was on time. Flights were uneventful. It was great. Results are back and the MIBG looked great (he only does MIBG and urine catecholomines now). Blood levels were all good. Late effects team is moving us to a 1 year follow-up schedule since we have an endocrinologist at home. He did a echo and that looked great. My cardio consult was interesting. We are on the right track treatment wise and the enalapril is very well tolerated. The condition is not something he is going to outgrow. The damage is done, the meds will allow the heart to work optimally. They have studies that show it is safe for 10 years (studies go back further than that though). More research is being done and we are hoping they will have a better understanding of this all before we need to it. Not really any answers but more shades of gray (nothing is black and white it seems). I felt better after talking to them though.

We are so blessed. Chris is doing amazingly. He is 7 years from diagnosis, 5 years from relapse and this summer makes 3 years off treatment. This is far from the norm. My heart aches when I think of all the children we've met on this journey that aren't here anymore, all the families devastated by their loss, all the children that are still fighting relapses and progressions and going on years and years of continuous therapy. There is some survivors guilt in there too. Why are we lucky and blessed enough to have such a sense of normallacy against all odds when so so so many other don't. I feel like to do it justice we have to embrace the normallacy and squeeze every ounce of happiness out of it. For the first time in a long long time I don't feel like the other shoe is about to drop, the drs still dont see us as out of the woods (they said there is no cure for relapsed nb) but it no longer feels like a near-term worry. Something we have the luxury of worrying about later. This is not something we take lightly or for granted. I wish my subconscious mind would cooperate more. I've been having dreams of a bone marrow relapse. I don't even think that's the most likely relapse scenario. My thoughts and prayers are with the many children facing the day to day realities and uncertainty of childhood cancer.

Well thats all for now. I will be putting up some new pictures in the next couple days so you can see how great the kids are looking.

Linda

May 13th

May already? The kids get out of school in 2 more weeks. Hard to believe. The kids are both looking forward to that. Breanna is so silly. At 7 years old she hates Mondays. She loves school, but hates the fact that Mondays start so early (6am wakeup). By midafternoon Sunday it hits her that she will have to wake up early the next day and she gets bummed out about it. She does fine getting up and going on school mornings though. And she goes to bed with no problems. Plenty of adults the same way I suppose. Chris is looking forward to the end of school for the extra time it will give him for video games. I'm looking forward to not having to review and go over homework with them in the evenings! Still working on summer plans to keep them busy.

On the medical front Breanna seems to have finally gotten over the spring asthma mess that usually happens. She's working on getting over an ear infection this week. She is growing into quite an awesome little girl if I don't say so myself. She's busy most weekends with sleepovers and play dates. Over spring break I had a work conference in Orlando. The kids came along and we went to Sea World and Busch Gardens. Bree can be quite timid at times but made an excellent effort and tried new things and was very happy with the results. It was a great opportunity to take a vacation even if I did have to work during the days. Chris also worked on overcoming fears and learned how to swim under water! He is handling his growth hormones like a champ (its a daily shot) and even lets me give them to him in his belly (still won't go for his legs though). He alternates between wanting to plan sleepovers and just wanting to hang out with his mommy. :) He's a lot of fun to hang out with too. Scans are next week. The fear of scans has lessened with time but it's still has the power to give some anxiety. Make me question percieved 'symptoms'. We get to meet with the cardio team and get that second opinion I've been waiting for. I'll update more afer we get results.

Linda

March 2nd 2011

Feb was a busy medical month for us. Chris followed up with Dermatology, Endocrinology, Audiology, Cardiology, and Peds Development; and Breanna with the Asthma and Allergy Drs.

The outcome of all of this:
Derm - no suspicious moles but a funky rash (moluscum contagioso), they put beetle juice on it and cream follow up in a month (which will be tomorrow)
Endo - no growth in 6 months. Now he has fallen completely off the growth chart. Submitting to insurance to get approval for growth hormones. Took a hand Xray for bone age and more blood work. Follow up in 6 months (should hear sooner about the ins approval)
Audio - stable hearing loss with the mention that he is at high risk for additional loss so be careful with loud noises (he blares his ipod) and medication that can cause hearing loss. Follow up in a year
Cardio - echo was improved over last time. getting a second opinion on prognosis as this cardio team doesn't understand the concept of late effects and couldn't provide any info on prognosis, this team wants to see him back in a year. Second opinion is sheduled in NY for May
Peds Development - sat through the 5 hour testing. Get results in 2 weeks.

Asthma/Allergy - Breathing is good, allergy/headache/stomach ache is bad. Changing the meds and follow up in a month

So 6 appointments down and 7 more scheduled..... ugh.

In the big picture we are doing good. Busy with school and the little things.

Thanks for checking in on us and Have a great week.

Linda

Friday, January 28, 2011

Before I start my update I want to say that I am absolutely sickened by the number of children that have lost their battle to neuroblastoma since the last time I updated. These aren't just statistics or another mark on the wall. These are beautiful children with lives and a future and all the potential that goes with it. Families and siblings that will never be whole again. I can't reflect on that line of thinking too long or I find it hard to come back. Their loss is felt by all who knew them and a constant reminder that:
-Nothing in Life is guaranteed
-Childhood cancer is far from cured
-Cancer sucks

We have been doing pretty well. It's been a very cold winter, but the promise of spring is in the air (or maybe I'm just being overly optimistic). We are already day-dreaming about planting the garden and wearing sandels and shorts. The kids are doing well and making great progress in school. Chris has jumped almost a grade level in reading in the last quarter (puts him almost caught up). And Breanna is thinking about staring in her own TV show, with a Rachel Ray/Martha Stewart type vibe, "Making with Breanna". She's going to show viewers how to make new things each week. She's been rehearsing in the kitchen for the past month. :) They have also learned that its not as much fun bowling without the bumpers. We went last weekend and they were disappointed when we ended up on a lane without bumpers. It's much harder to knock down pins when you have to worry about the gutters.

Medically speaking:
I'll start with Breanna, After some asthma trouble earlier this month we have switched up her maintenance drugs and hope to keep things better controlled.

Chris is due for a bunch of appointments that seem designed to ensure we make our deductible early this year. Dermatology wants to give him a thorough look over next week. The following week he goes in for hearing test/hearing aid follow up and endocrine exam. Week after that its cardio and the week after that is neuropysch. All of these are either directly ordered by the late effects dr or things we already had scheduled to follow up on the late effects we've already seen. I had a good LONG phone conversation with the late effect team in NY a week ago that left my head spinning (I even had to take notes). The radiation exposure to his pituitary gland was more than they anticipated (they finally got the full report from SC) and we have some additional things to watch for. The pituitary regulates most of the hormones in the body. Most levels look good now (with the exception of the borderline growth hormone) but there is concern for the short and long term. I'll keep you posted on how that all progresses.

Chris is exstatic with plans for the upcoming weekends. He was again invited to go on the DWF Youth Dunk Hunt next weekend. He's made buddies with one of the guys that organizes it and is planning a weekend away doing 'guy things'. Thats got Breanna thinking on what kind of "girls weekend" we can do.

Hope you all have a great weekend.

Tuesday, December 14, 2010

Despite a lack of updates things are going relatively well. Fall is almost over and winter is here. Kids are doing well in school. 3rd grade seems to have a bigger emphasis on responsibility/organizational skills. There are days when I'm not quite sure what it is that Chris has going on homework wise (he's supposed to organize his binder). I'm told they don't teach the kids how to read/write in cursive anymore, but his spelling homework sheets has the answer key in cursive.... He's passing though and making improvements. He still struggles in some areas but also has some areas he really enjoys. He told me in detail about the Boston Tea Party last week and was pretty impressed with it. Breanna is loving school. Learning to read better each day. Most evening when I go to check on the kids after bedtime she will be sleeping with books surrounding her in bed.

Medically speaking things have been smooth. Chris' heart issues are under control for now. We consulted with the cardio team in NY while we were there in November and his heart function is good right now. The impression I get is that the medication will be a life-long thing, adjusting dosage as he grows. The damage from the chemo being permanent, but we can hope to manage symptoms with meds. Speaking of the New York visit, scans went well and the focus this trip was more on late effects. We met with the late effects team and discussed what we need to be most vigilant for. They want to follow him on a 6 month schedule. This works as we are now on the 6 month schedule for scans as well. I was very impressed with the late effects team. They prepared a packet for me on all the treatments Chris has received and the frequency of followup we need for each area of concern. Its incredible to not have to go back to NY for 6 months. Of course we will be seeing several drs at home in the meantime (home oncology team, cardio, ent, endocrine, etc). Seems to be averaging about once a month for a specialist appointment.

This time of year I always find myself reflecting. 6 years ago we were in hibernation mode recovering from a stem cell transplant. 5 years ago we had just found out about relapse and were preparing for brain surgery. 4 years ago we had a crazy time with chicken pox exposure, antibody treatments, getting discharged from the NY hospital just to fly home and be admitted here with a line infections and subsequent surgery, and scans all mixed in, 3 years ago we were investigating the left arm posturing thing and doing antibodies and balancing appointments and scans and rescans at both hospitals. 2 years ago we were back and forth with scans and after a hellacious long day of scans he flat out refused to participate in MRI scans any more without anesthesia, and last year we were starting weekly physical therapy appointments to improve his left arm posture/funcion.

In the 6 and a half years we've been going down this cancer road most of the kids that started with us and many of the ones that have been diagnosed along the way are no longer here, leaving a huge hole in the lives of everyone who knew them. I am thankful to be where we are in this 'journey'. I am so grateful for
the blessings I've been given and know all too well not to take them for granted. During this holiday season I would like to wish you all many blessings for the year to come and ask that you take a moment to relect on your blessings and perhaps offer a prayer up for those that are going through a rough time. Thank you all for your thoughts, prayers, and well wishes over the years.

Linda and my wild and crazy "tribe" (Breannas word for us).

Sunday, August 15, 2010

Summer vacation ends tonight. The kids start back at school tomorrow. Chris is entering the 3rd grade and Breanna the first. Breanna is rather excited to get back to it and start learning more. Chris is excited to see his friends.

I've been procrastinating on posting an update as I waited to get some more information from the drs about an issue that presented itself June 1st. Things are still kinda cloudy and uncertain but its time to update.

Summer recap:

First the fun stuff. Chris started off his summer with a week long summer camp up in the mountains. They did some fun activities like tipi making, fishing, hiking, archery, canoeing, swimming, and several others. He had a wonderful time and was sad to go home. In July they both went to a summer camp for kids and their siblings with cancer - Camp Happy Days. This is a great week spent up on the lake where the kids get to just be kids and hang out with others that understand and can relate to some of the things they have been through. If I had to describe the week in one word I would say Magical. No parents allowed so the details I get are scarce and sometimes a little unbelievable(Chris reports his favorite part was making a pyramid of boys while tubing - he was on the top). Chris did an overnight fishing trip 2 weekends ago with one of his buddies he met at the duck hunt this spring.

This has also been the summer of babies. My good friends Tonya and Daniel had their first July 2 and than my brother Stephen and Tiffany had their first July 9th. Chris and Breanna can't wait to teach Connor and Issabella some cool stuff.

On the doctor front things have been up and down. On the up side, I heard back from the NY doctors. They said we can now go to scans every 6 months and we can cut out all but the MIBG scan and the urine test. That means no bone marrow biopsies, CTs or MRIs. He won't need anesthesia. It does scare me a little (alot if I think about it too long) but we are trusting the drs. There comes a point where the extra radiation exposure from the scans is doing more damage than good. They will still watch for recurrance but this is a definite step in the right direction for the rest of his life.

Now for the thing thats bothered me for the past couple months. June 1st Chris went in for a follow up with the team here. They did the yearly echo and EKG. Echo showed that his heart function has decreased quite a bit since the year before (40rop in shortening fraction for those that know what this means). They referred us to a cardiologist and were able to get us worked in 3 days later. Cardiologist told us that its heart failure. AT this point we seem to have caught it early but its one of those late effects we were told about years ago while he was taking chemo, so it's expected to get worse. The plan is to give heart meds and hope that it can improve the symptoms and slow the damage. They had us come back 6 weeks later to see if the meds were working and the one marker was better but another was worse. They doubled his dose of meds and wanted him back 6 weeks later. His next appointment is this Friday so we will be able to see what is going on. I'm told worse case is him needing a heart transplant, but that would be years away. Kids can live with heart failure and have very few symptoms until it is very advanced. That in itself was a little reassuring to me. Yes this is bad news, but its not an immediate life-threatening situation. We have some time to try and stop this. I've been agonizing over this for most of the summer and have come to a sort of peace with it. It is what it is, and it's out of my hands. We've got good doctors that are caring for him (the cardio team here is suposed to be excellent, and we are getting in with the late effects team in NY when we go back in November). I would appreciate prayers though if you are so inclined. I've told a few close friends already what we were dealing with and have a feeling there prayers that is where my peace of mind is coming from.

Thanks for checking in on us. I'll have more news after next week, first week of school, cardio follow up etc. Somebody also turns 8 in a week and a half!

Friday, August 6, 2010

We are still alive. It's been an incredible summer. I'm going to put up a proper update this evening. Got some really good news and some that has given me some trouble trying to wrap my mind around...

Friday, May 21, 2010

2 weeks ago I was really stressed out. We were to leave on a flight Mothers Day morning for NY for a complete workup of scans and consultations. I was anticipating getting answers on the lung spots and the arachnoid cyst in his brain. Scans always tend to stress me out. They do them to look for cancer. With him already relapsing once it is expected to happen again. 4 times a year when scan time rolls around I have to face that fact. The rest of the time we try and embrace how lucky and grateful we are. Chris is 4 and 1/2 years out from relapse and 2 years off therapy. That is truely incredible. I would like to think that means something about his long term prognosis but I don't know that and the fact that the Drs want to scan every 3 months mean they don't feel confident in that either.

As I was sitting on a plane bright and early on mothers day to do what felt like looking for trouble I counted in my head how many times we have been to NY to see his Drs. This made our 25th trip since Jan 06. Wow. That is a lot of plane rides. I than went on to count how many rounds of scans he has had, 17 in new york (some of his NY trips were scans and treatment combined) 8 at home before relapse for a total of 25. That is a heck of a lot of bone marrow biopsies and CTs/MRIs/MIBGs. I decided I would talk to the Drs about letting him go longer between scans (maybe 4 months or 6 months) or maybe even letting him alternate scans between there and home. Scan week went relatively well. No major hiccups during the procedures. We had to stay through Thursday to meet with the neurologist which gave them enough time to have the preliminary results in before we left. Everything is looking good. We can breathe easy for another 3 months. I reread the scan results twice to make sure, but yes everything is ok.

They didn't mention the brain cyst this time or lung spots. Overall the reports had less details than normal. I'm not sure if that is the result of a busy radiologist that made less 'comments' or just overall a clear picture. I met with the neurologist and she pulled up the scans, this round and some previous, to look at the cyst. She called it very small (looks about the size of my pinkie- but apparently these things can get reallly big). Said it is possible this is causing the left arm issues and maybe even the seizures. But we are treating those appropriately. If the arm gets worse we might talk about botox injections. Most of these types of cysts don't cause any symptoms and don't cause any problems. He has the advantage of doing scans for other reasons so we will be able to keep an eye on it. She also said she wants us to see Dr Sklar. He is the late effects Dr on the team. As for the scan frequency question, I asked and was told something along the lines of "Well you know he's had a recurrence", but that the team will discuss and get back to me.

On one hand if traveling to NY 4 times a year for scans can help prevent bad things, it seems like a small price to pay. But it's wearing me out. Its not cheap for flights and meals and lodging. And its a lot of school and work missed. Sigh.

All in all a very good trip. Very happy with the results. And now to get back to regular kid stuff.

Breanna graduates kindergarten next week. Chris is ready for the end of the school year and summer break (No Homework and sleeping in!). They have both had a blast riding bicycles and showing off lately. They helped me plant some flowers over the weekend and showed me how much fun can be had with a slip and slide! Its been pleasantly warm here so we have enjoyed grilling hamburgers and hotdogs and corn on the cob on the grill.

Thanks for checking in with us. Hope your summer is off to a good start too!

Linda

Monday, May 3, 2010

I started updating 2 weeks ago. April 16th 2004 was Chris' diagnosis day. It was a day of mixed emotions. Extreme gratitude that he is still here 6 years later. Sorrow for the dozens of others we have met along the way that aren't here. Uncertainty at what the future might hold. And pain at the memory of all that has transpired. Just like the physical scars that are across Chris' body we all carry emotional ones as well.

Things continue to go pretty good around here. On the doctor front Chris had his GH stim test. It is a test where they give him medicine to force his body to produce as much growth hormone as it is capable of and they draw blood to check and see what that is. This will tell us in a definitive manner whether he is deficient. The side effect of the medicine they give him for this test is that the blood pressure plummets. At the lowest it was 50/30. He felt pretty crummy. They had to wake him up to see if that would bring it back up and didn't let us go home until it came back to a more normal level. He was pretty wiped out for the day though. We don't get results for another month. Breanna had her asthma follow-up. Dr said they can still see the asthma effects on her breathing test (cool looking machine that she breathes into). That and the fact that she's had bronchitis twice since Thanksgiving and they don't want to decrease her medications list at this time. We will go back after the summer and see him again. Chris also had a follow up with the ENT. He has some fluid collecting in the right ear. Dr said we might want to consider putting a tube in again. I reminded him that the last 3 times we have put tubes in the wax clogs them and it has to be removed typically about a month later(something about radiation damage to the ear wax gland - sometimes I think they make this stuff up). So we will put that off for now. Both kids had a dentist appointment. I was pretty pleased with that. No cavities and or pressing issues.

On the personal front the kids have been having a blast. They have both mastered the art of two-wheel biking and try to show off ("Look mom no hands!"). After a chin-dive into the pavement and a quick ER trip for some chin glue (they decided against stitches) Breanna has a new respect for gravity. We've packed in some picnics, kite flying, going to the beach, a weekend doing volunteer work in the mountains, minor league baseball games, and sleepovers. The kids are ready for school to be out and summer fun to begin.

We will zip up to NY for a pre-summer set of scans and talks with the team. Thanks for checking on us. Please keep prayers and a happy thought for the coming full work-up the team will do to ensure we are still headed on the right track. I'll update towards the end of the month when we have scan results.

Linda

Friday, March 12, 2010

I've finally got the rest of the scans in. The whole scan process is irritating me recently but the results came back ok. My irritation comes that the results are never black and white. Its all shades of gray. I would like a simple "Scans are clean and there is nothing there" (or how about a "Cancers gone, it's never coming back"), but instead I'm getting a "No new disease" but we had some questionable spots on his Chest CT last time and still aren't sure what they are so the previous statement isn't 100% reassuring. The Dr's are happy - the spots aren't any bigger and said we will continue to keep an eye on those 'questionable' spots. So we save that worry for another day. It could be something as benign as a residual cough. They don't show up on MIBG so we aren't jumping to conclusions. I tend to get myself worked up about it and than perspective comes into the picture. It could be much worse. In the last month many more of our cancer friends have relapsed (some after several years of being clean). We will continue on this course until can't any longer. His MRI report also caught my attention. No questionable spots there. But a side note that the 'arachnoid cyst is unchanged'. Hmm first I'm hearing of that... UGH. Unchanged is good. But the fact that there is a cyst in his brain makes me a little uncomfortable. I'm waiting for some answers from the dr on the How long its been there? How big is it? Has it changed any over time? Do we need to do anything more than keep an eye on it? Is it responsible for his seizures? How about the left arm muscle weakness? I would really enjoy some face time with the Onc drs and the Neurologist to discuss this, but we're not due back in there for another 2 months.

Aside from all that Chris is doing well. He's been enjoying some Wii race car driving and jousting (medevil game). He's getting over a cold. Breanna wasn't so lucky. His cold went into bronchitis for her. She's on prednisone for the wheezing/asthma and that always makes for interesting conversations with her (she talks non-stop on the stuff). She told me yesterday that she is the Princess of South Carolina. She continues to amaze me at how much she is learning in kindergarten. Thanks for checking on us. I'll update after the dr's email me back with some more info on the cyst. Please keep all of the cancer warriors in your prayers.

Linda

Wednesday, March 3, 2010

I've been remiss in updating. January rushed by and Febuary was worse. I'll start with January. Chris continued to do weekly physical therapy for all of Jan and most of Feb. It seemed to have the desired effect and strengthened his left arm/shoulder. By the end he was mastering pull ups on the bench. He's now 'graduated' physical therapy and we just have to be conscious to encourage him to do his excercises at home and not favor the right side to the extreme. In January the kids also both reached a milestone. They can now both ride their bikes without training wheels! They are pretty impressed by this and love to show off their new skills.

February started out pretty fun. Chris was invited to go on a Youth Duck Hunt Weekend. They picked him up Friday afternoon and brought him back to me on Sunday. He had a WONDERFUL time! Hanging out in the woods, playing with the dogs (one of the best parts I hear), eating camp-out foods and being a complete prankster. If he asks you to play odds or evens with him I wouldn't take him up on the game. ;-) Breanna and I enjoyed a girls weekend at home while he was gone. She enjoys the one-on-one time and it helps make up for the left-out feelings when she stays behind and Chris and I go to NY. The second week in Feb we were supposed to be up in NY for scans, but the flights were cancelled the day before we were to leave due to snow (and lots of it) in the northeast. I believe they called it a snow hurricane. I tried to scramble and find backup flights but it became obvious it just wasn't going to be safe to travel. We enjoyed our surprise weekend home doing fun things (chuck-e-cheeses, bowling and I taught Chris how to cook steak - he's turning into quite a chef). That weekend it also happened to snow in SC for the first time in 20 years. We got about 8 inches. The kids tore into it, making snowmen, sledding (lol - redneck style, I'll have some pics up by this weekend), etc. The good thing about that was that the snow had all melted by the next afternoon, staying just long enough to enjoy but not to get in the way.

We rescheduled the scans and were able to make it up to NY end of the month. Of course scheduling at the last minute we didn't get the best scan times (instead of everything in 2 days it got stretched out over 4). Everything went pretty smoothly. It amazes me the only thing that seems to upset Chris about the whole scan procedures is the IV. He gets very anxious leading up to it. I find myself positioning myself in the waiting room to catch him when he decides to make a break for it and try and hide in the clinic. After its in and wrapped up he's ok with it, but hates that they have to unwrap it to look at it before they use it each time. I still haven't figured out a good way to handle this. I'm sure the current approach of holding him down to get the IV put in doesn't help (makes him not in control and he's 'forced' to get it) but no degree of logic, or bargaining seems to help things. It was made worse when they couldn't get a good elbow vein and went for the wrist instead (and PT doesn't want him to get IVs in the left arm if we can avoid it). We were able to find some fun in NY. Went to Times Square and the Toys R Us there. Chris always wants to eat at the Bubba Gump restaurant over there afterwards and than a trip to M&M world. He picked out an alarm clock that he had been working on convincing me to buy him for months. That thing is loud enough to wake up the whole house! The Ronald took a group of us to Dave and Busters one night. Thats like a grown up version of ChuckECheese. Dinner and Arcade type games. Chris won a prize and picked out something for his sister.
Between scans we also found time to do a bunch of homework, play some nintendo DS, and make a volcano in the playroom at the Ronald. In the middle of the week it started snowing and didn't stop. The snow seemed to come from all directions and just piled up outside. They said it was almost 2 ft of snow. We lucked out and the sun was shining on Saturday morning, the plows were working the runways and we were able to get out.

I'm still waiting on some results to come in but so far so good. I'll post more in the next day or two....

Linda

Wednesday, December 30, 2009

We all had a wonderful Christmas. Hope you all did too. Santa was good to the kids and they are enjoying the rest of their winter holiday from school. Chris had his first 2 appointments with PT. It appears he has lost some more strength in the left arm compared to when they tested it a year ago. They've got him on a strengthening routine (with homework for the days he's not there). After his first appointment he was not too impressed. He practically ran out of the office and told me on the way home that PT hurts. We had better results the second time. That first visit was a lot of testing what he could do, the second one was more playing games to strengthen it.

We squeezed in a dr appointment to get some more catch-up shots (still re-doing his baby shots) for him last week and also ended up back at the dr Christmas eve with an ear infection. I was impressed (as was he) they prescribed his antibiotic as pills instead of the refrigerated pink medicine he never liked the taste of. Much easier with pills.

Yesterday we met with Endocrin again. Apparently the labs we did last time don't mean anything. Instead of sending the one blood test off to the specialist lab like they did the first time, they did the test locally. Anyway we can't compare the results to see if the growth hormone level is getting better/worse/same because each lab has a different 'normal' range. UGH. She did show us some neat charts to compare his height to other kids his age (now hes at the 3% mark - meaning 3% of 7 year olds are shorter than him). At his current height they would predict he will be maybe 5 ft 6in by the time he is done growing. The interesting curve was the growth velocity. It shows the rate of growth and you can compare it to the norm for kids his age. His velocity of growth is much below the norm. Meaning that if he continues to grow at this rate he wouldn't reach the 5 ft 6. I've probably got my numbers wrong but the first measure of velocity they had for him was a 3 (meaning cm per year). Normal for the age should by 7-9. The second measure they got between the last visit and yesterdays was better (5) but still low. Seems we need to gather more data, compare some more numbers and follow up in a couple months. Watch how its trending, etc. There is another test they can do to measure how much growth hormone his brain produces. This involves giving him meds to make his brain produce as much growth hormone as it possibly can and drawing blood to analyze how much it made. This test will take a while to schedule but should give a clear cut answer to what is going on there. Interesting information.

Breanna turns 6 on Sunday!

Hope you all have a wonderful new year!

Linda

Tuesday, December 15, 2009

Time flies. What to say??? The problem with waiting so long between updates is that than you have a lot to say and have to skimp on details or wait until you have the time to write a full update (and still skimp on some details)...

Chris was back up for scans mid November. Everything is looking great. There was a spot that showed up on the chest CT that they want to watch closely next time we do scans. They think it's just residual cough/cold but will keep a close eye on it when we rescan. Must not be too bad because they don't want to rescan early.

After much discussion the Drs decided not to recommend we get started on the vaccine trial. They think he's doing too good right now for us to put him on it (and at risk of some unknown side effects). There are kids more in need of that therapy and his being on it would remove one slot that someone else could use. It's a phase 1 trial (basically an expirement to find out the highest tolerable dose they can give kids) and there could be some risks associated with that. I was kinda looking forward to doing another treatment to up the odds and keep the beast away longer, but I trust the drs and they don't think now is the time for him to do it (though they said it might be something they will recommend in the future for him).

With that off the table the endocrinologist want to start him on growth hormones. He's a little shrimp. He's about to fall off the growth charts (In the last year he dropped from 25or height to 5 They have been watching his growth hormone level and it is very low. Without that he's not going to grow much. It also affects things like energy levels, fatigue, etc. So we are strongly considering this. It's not an uncommon side effect of the treatment he's had. It would be a daily shot. There is some controversy in the medical community on it. Oncologist want us to wait at least 6 months and talk about it again than.

Neurology is sending him for PT to increase his left arm endurance (radiation damaged the spinal coritcal tract and causes the left arm to fatigue). We meet with them next week for them to evaluate him and come up with a plan.

Hearing aids seem to be working well. He's got a sound field in the classroom (basically the teacher talks into a microphone and there are 2 speakers in the class). It ups the teachers volume and I'm told is beneficial to all the kids. Must be doing something right. He is doing much better with reading. It feels good to not see him struggle so much with it.

Breannas had a busy few months as well. We all came down with the swine flu mid October. The fatigue from that lasted a few weeks. Of course that flared up her asthma and she's been rough ever since. She went into an Upper Respiratory Infection 2 weeks later. Thanksgiving day she had a bad asthma attack that wouldn't respond to the rescue meds. Scared me pretty bad. On call dr had us give her some steroids we had on hand from the last time she was on them. We managed to stay out of the ER but it wasn't pretty. We got in to see the asthma dr that next Tuesday and she had Bronchitis. We're switching up her maintenance meds and hoping to keep her healthy for a while.

Shes enjoying kindergarten. They had a Thanksgiving Play and she had a speaking role. Too cute. They have a field trip to the fire station this week and are bringing the firemen cookies and going to sing Christmas carols for them. Chris is a little jealous that kindergarteners get to have the better field trips. 2nd grade has more of a focus on teaching I guess.

October marked 5 years from transplant and this month marks 4 years from relapse. All in all a truely amazing milestone. To see how far he's come and how well he's doing.... WoW. It's with mixed emotions that we celebrate these milestones. For every child that seems to be doing well there are countless others that are in an intense struggle and an equal number of parents that are mourning the loss of their precious angels. Late term effects are mild in comparison. My thoughts and prayers go out to those families especially this time of year. The tight rope of health that we walk is an uncertain one and that reality doesn't leave me. This is a great time of year to count your blessings. We are very fortunate indeed. Thank you all for your thoughts, prayers and support.

Merry Christmas to all...

Linda

ps. I've got pictures I will upload from the fall school pics.

Friday, September 4, 2009

Summer Update part 2. For part one see the journal history.

August started with getting ready for my good friend and the kids Godmother, Tonya's wedding. We were all in the wedding party. It was a beautiful service and I was impressed at how well the kids did. Then it was off to the reception where they danced up a storm. The next day Chris and I flew up to NY for scans. Spent a couple days up there getting CT, MRI, bone marrows biopsies, and MIBG scanned. Chris had a wierd reaction to the face masks up there. He started sneezing when we got in the hospital the first morning so I made him put a mask on, just in case if the sneezes were the start of a cold (it wasn't he didn't sneeze again). The mask irritated his skin and he broke out in hives on his face where the mask covered, basically from ear to ear, across the nose and down to the chin. We had to see a dr to find out what was going on. They said it wasn't a rash and didn't look contagious, but that it looked like an allergic reaction. Had to get special permission to give him some benadryl (he was scheduled for anesthesia later that morning for bone marrows) and it finally started to clear up a little. It ended up taking several days to fully clear up, and only than after they switched him to vistarel.

Horrible storms on the day we wanted to fly back. We ended up getting stuck in Atlanta for the night. They did put us up in a hotel for the night. We got back mid-day Thursday.
That night was meet the teacher. To say Breanna was excited was an understatement. Between our getting home and the school element she was so wound up. She seemed to like her teacher. The teachers aid lives on a farm with horses and that impressed Breanna. Than we met Chris' teacher. He's in an all-boy class this year. It was optional and I debated it, but eventually decided that if its all boy they will target the lessons to boy themes (star wars, sports and fishing?) and that might help get/keep him interested. He was impressed that there were some kids in his class from last year.

Spent the weekend getting caught up on sleep and laundry and they started school on the Monday the 17th. They are now finishing up the second week and seem to be doing alright. Breanna is now a Kindergartener and gets to ride the bus with Chris (she is very happy about that), and Chris started 2nd grade.

Monday was Chris' 7th Birthday. We had a party at the house for about a dozen kids and all the adult family and friends.

Got an email back from NY and scans are all looking good. Waiting to hear on the bone marrow aspirates still and getting more information on further treatment (the vaccine trial is out now). More info on that next time.

Take Care,

Linda

Thursday, August 20, 2009

You've probably been wondering what's been going on and why we've been so quite. We had a nice summer. Mostly normal and BUSY. At the end of June Chris and Breanna went to Camp Happy Days, a one-week summer camp for kids with cancer and their siblings. They had a blast. Since returning from that I've overheard Chris asking several of his friends and even adults he knows if they have cancer too. I think the camp provides them with the ability to enjoy normal camp activities and to talk about cancer stuff with other kids in the same situation. It's an interesting dynamic and he has a rather adult perspective on it all though I still try to shield him from some of it.

Mid July Chris went to a week of summer camp up at Green River Preserve in the mountains of North Carolina. This is a nature appreciation type camp. Chris really enjoyed this. They had lots of fun activities from playing in waterfalls and caves to skeet shooting. This was a much harder camp to send him to (for me) because it is much farther away and is a normal camp, not specifically for kids with cancer. My mind worried about all the potential problems, but all in all it went great. He made friends with the nurses there and everyone seemed to know him by the time the week was over.

After he got back from camp Chris had surgery scheduled. We got down to the hospital. Waited forever. They finally took him in and 10 mins later the Dr is out in the waiting room looking for me. They did not have to do the surgery. At least at this time. It was decided the surgery is not needed at this time and best course of action is more waiting. Just have to follow up in a year. Needless to say Chris was very happy when he woke up.

July ended with him going in for an ENT follow-up. Hearing in the high-pitch ranges is still bad and they've referred him for hearing aides. This should help him in school by not needing to strain as hard to hear what is being said.

That catches the journal up through July. I'll post more tomorrow on what we've been up to in August (Tonyas wedding, a trip to NY for scans and the first day of school) and some pics!

Thanks for checking on us.

Linda

Thursday, July 23, 2009

Alls well.

New pic at top.

Full update coming shortly.

r/Linda

Tuesday, June 9, 2009

Todays Chris last day of school! He's very excited for summer. Bree is going to continue with the summer program at her school. They schedule daily fieldtrips to the bowling alley, waterparks, movies, etc. It wasn't worth signing Chris up for it because you have to pay for the whole summer and he has 2 weeks of summer camp, a week in NY for scans and surgery the end of July. There's only 9 weeks between when they get out and when they start back up. When he's not at camp or in NY he's going to hang out with Grandpa a couple days a week and with Tonya a couple. Sounds like they've got some fun things planned as well.

Last week was a little too busy. We had 5 dr apts, and 2 end-of-year programs. Breanna's
Awards Ceremony was on Tuesday. She got 4 awards and was quite impressed. She made honor roll, got a reading and math award and the bible award. Thursday was her graduation ceremony. The kids also put on a performance with singing and reciting poems and bible verses. Very cute.

Now for the dr recap. Tuesday Chris went back to the Urologist to follow up on the retractable testicles. They're now concerned enough that they want to do surgery to correct it. That's scheduled for late July. Risks are minimal but it is expected to take 2 1/2 hours! He was in the room as the dr was telling me about what they will do and was quite nervous. Wednesday both kids went to the dentist and got a clean report! Breanna vowed that she is never going back there again. She did not enjoy getting her teeth cleaned. Thursday Chris had a check-up with the GP. Its been decided that he should get immunized (AGAIN! Chemo wiped out all his immunizations the first go round). He got 4 shots (in the hiney no less). He was less than impressed but managed to talk me into buying him a toy at the pharmacy because "That was serious pain mom." I took advantage of being at the family doc and had him check me out too. My sinus' were really bothering me and sure enough I've got a sinus infection. I think the hectic week caught up with me because on Friday I felt worse and didn't make it into work. I slept most of the day. Yesterday Breanna had her asthma dr checkup. He's very pleased with how she's been doing and thinks we should try and step her off some of the meds she is on. She's been on 4 meds to control the asthma and its been working great. In the last 6 months she only had to use the rescue meds 3 times. So now we are going to step her off of one of them and see how she does. I'm hoping that she's outgrowing some of this and she can maintain a decent level of asthma control with less medication.

Hopefully things will slow down a little now. Chris has one more appt on Thursday with ENT and for an audiogram. After that they get the rest of the summer off from drs and can focus on some fun.

Thanks for checking on us. Hope you all have fun summer plans too!

Linda

Friday, May 15, 2009

Good morning. The end of the school year is fast approaching. We've scheduled some of the many follow-up apt's with all the different specialist that want to see Chris. He's a popular boy. He went to see Endocrinologist mid-April. Dr said that we need to continue coming in every 6 months so they can keep an eye on him. They did bloodwork to check his thyroid level and vitamin D level (both came back good). He said there was no point to check the growth hormone level at that point because we wouldn't do anything about it if it was low. It was low last October and thats why we are on the every 6 month schedule. They check it again this October just to keep an eye on it. He's gained weight and grown taller, still in the 10or height and 25or weight. But he's managing to stay a little bigger than his sis, but just barely.

He had his check-up at the oncologist at the begining of the month. Everything looks pretty good. They sent him for Echo and EKG (he was complaining his heart hurt, but really he was due for them). Echo was good, I haven't heard on the EKG, but it must have been ok or they would have called back.

Next month he goes back to the Urologist, ENT and dentist. Brees got her 4K graduation, dentist and asthma follow-up. Its shaping up to be a busy summer but most of its fun stuff. Summercamp, swim lessons for Chris, a 6 week dance class for Bree, Tonyas wedding (they're so excited, they're both in it!), and a trip to NY in Aug for scans and to see the movement disorder docs at Columbia Univ. Then school starts back mid-August.

Enough of the dr stuff. We're doing pretty good. Breanna got a Super Sib trophy (SuperSibs is an organization to help the siblings of kids with cancer cope) in the mail the other day. Sometimes the sibs feel left out because the sick kids gets more attention, etc from the parents. She loved the trophy. It really seemed to help acknowledge how special and loved she is.

Chris went fishing with his uncles (all three were able to coordinate a day off!). They all had a blast. Caught a ton of catfish and can't wait to go again.

Thanks for checking on us!

Linda

Monday, April 13, 2009 6:27 AM CDT

April 13th

Happy Easter! Since the last update we have been up to a whole lot of 'normal'. Chris was invited to go out with the Delta Waterfowl Associations annual Youth Day Hunt. He brought home a duck (that he's named Jacob) and some great memories. This was back in February and he is still talking about it. We've been out to the beach, went to a hockey game, and had another trip up to NY. We managed to schedule that over spring break and were even able to attend the hospital in NYs Neuroblastoma Reunion. A chance to get all of the patients treated by Sloan for Neuroblastoma in one room and celebrate how far they have come in treating this. It was very uplifting.

He's going back in to the Endocrinologist today to check his levels of growth hormone. They were low last time and they wanted to recheck and see if they were going to recover on their own.

Kids are doing good. Chris continues to ask me for a puppy and Breanna wants me to sign her up for : swimming, karate, ballet AND soccer. I don't think there's enough hours in the week to squeeze all that in. She's also decided she want me to get her an island when she turns 18. Chris is trying to make plans to go fishing and is far too impressed with his ability to burp. boys!

Thanks for checking on us.

Linda

Tuesday, March 17, 2009

OK I'm going to put it in writing because then it will have to be true. Within the next 48 hours I will post a real update on how everyone is doing INCLUDING pictures. Thanks for your patience all.

Linda

Tuesday, January 27, 2009

Its been another month. The lack of updates is due to life getting back to normal. Things have been good. Christmas was nice. The kids enjoyed themselves and the opportunity to spend the day with family. We finally got Chris' MRI scheduled. They did that last week and the preliminary look was great. They're supposed to fax me the final report. It's hard to believe that here we are embracing this life. There are no guarantees and I'm not sure how long we'll be in the wonderful place that we are in (I'd like it to last forever - but I'm greedy like that). Every day new children are diagnosed. Others relapse for the first, second, etc time. And others lose their battle. This life seems surreal. At times I almost forget 'that' reality and other times it gives me incredible perspective on what's really important in life.

Where are we at now? Chris is off treatment. The scans do not detect any cancer in his body. (Praise the Lord!). That doesn't mean that we are done or out of the woods or even in remission (that's a term they don't use with neuroblastoma). Fact is neuroblastoma can hide in the body undetected for quite a while. After a child relapses with it, they say their is no cure. It's probably still lurking undetected waiting for a chance to lash back. I choose not to dwell on that. Can't fight what you can't define. No need to borrow tomorrows troubles. And maybe we'll be lucky and be on the cutting edge of finding the cure. One can hope. So I continue to research the next step. There's the possiblity of a vaccine trial. That has been on the horizon now for so long but is still not available. We are following up and looking out for and treating late effects of the treatments he has received. That's something that is not going to go away, some will probably get worse, but we will deal with that too. Fact is we're lucky to be at a point were we can deal with late effects. It means he has survived long enough and that we are not worried about the short-term effects of a treatment. We are coming up on the 5 year mark. April 16th makes 5 years from the time Chris was diagnosed with neuroblastoma. Something hadn't been right for about 6 weeks before that. Time flies. Breanna was born that January 3rd, 04, just 3 months before that. These 5 years have been some of the best and worst of my life. Overall I feel so very lucky for my family, friends and the experiences we've had along the way. Yea some of them I could have done without. What will the next five years bring? Only time will tell.

What can I say about Breanna. That child has spunk. She's 5 now. No longer a baby. Both my children love cooking, but she is the expert at cracking eggs. If I don't get up fast enough on the weekends she will come tell me as I'm getting dressed that she's cooking breakfast. She's cracked the eggs and got them in the pan and just needs me to turn on the stove. We still clash on occasion over who is actually in charge. I like to think that her spirited determination and stubborness while challenging for me now will be character traits that will suit her well in her future. How's that for a positive spin. ;)

Thanks for checking on us.

Linda

Friday, December 19, 2008

Good news, bad news. Good news Chris' CT and MIBG are clear! YIPEE! Bad news we don't have results on the MRI because we weren't able to do an MRI. Last Friday was a crazy day. We were at the hospital for 13 hours. Nothing seemed to go right. I misread the time we were supposed to get there so we were at the hospital an hour early(6:30am). We made the best of the situation and worked on his schoolwork before they put in his IV. Then they drew his labs, we met with the Dr's, drank the CT contrast and headed down to CT. They called him back on time (a surprise, usually CT is running behind) only to tell us that his creatine level had hemolyed and they weren't able to get an accurate reading. This meant we needed to go back upstairs, draw more blood, wait on the lab and than do the CT. Not a problem we handled it in stride. Finally got to do the CT an hour and a half later. He did wonderful in the CT and we were in and out in 15 minutes. We headed back upstairs to play in the playroom until it was time for his bone marrows. They called him back for that mostly on time. 20 mins in the procedure room another 30 in the recovery room and then they bring him out to me. He's still dazed and doped from the anesthesia but we've got to hurry to get to nuclear medicine for his injection at 2. I know that he's going to be impossible until I get him something to eat (he hasn't had breakfast yet and it's now 1:30) so we head to the cafeteria. Carrying him, his bag and then his lunch through the hospital we get our food, and get back up to nuclear medicine managing to only make a little scene (by this point he's recovered enough from the anesthesia that he wants to walk, but he's stumbling like a drunk). I let him take a bite of his hamburger before getting him to take the SSKI drops (nasty tasting stuff he's got to take an hour before the injection to protect his thyroid). It usually takes them about an hour to get his injection ready and we were back almost on schedule. Wrong. They call him back 40 mins later and tell me that they need 2 hrs between taking the drops and getting the injection, so come back at 4... ugh. So we go hang out in the playroom for an hour knowing that now we're going to have to rush to get to MRI at 4:30. We finally get the injection at 4:20 and rush up to MRI. Get there right at 4:30 and they tell me that they've been trying to reach us to see if we could come early. One machine is down and they are behind schedule. They could have taken us earlier but now won't be able to get to us until 6. Ugh again, but that's ok we can wait. Hospitals are all about waiting and we weren't expecting them to be ready right on time anyway. We build an awesome rocketship out of legos and are goofing around. They call him back. Panic sets in. He's been doing MRIs without anesthesia for a year and a half now and I've been really proud of how well he does with it. In the begining it took some convincing to get him to stay still for it, but for the last 2 times he's just hopped right up and not hardly complained at all. The techs have even complemented him on it. Not this time. He totally freaked out. Would not lay down. When we finally got him to lay down and in the tunnel he starts screaming and trying to shimmy out of the tunnel. They told us to take a break. Go wait in the waiting room and we'll try again after he's calmed down. OK makes sense. They call him back again. It's now 7pm. He seems most upset by the noise. They tried putting earplugs and headphones with music on him to really drown out the noise, but no luck. He just wasn't having it. He's now swearing that he's NEVER going to do the loud machine again. The MRI techs realize this isn't going to happen today and tell us to reschedule. We finally leave the hospital at 7:30pm exhausted and emotionally drained.

Saturday he finished up his MIBG and in the afternoon the Ronald gave us two tickets to see Cirque de Solei. The show was awesome and Chris really enjoyed it. We ended up being able to fly home on Sunday (at first we thought we wouldn't be able to leave until Monday). Sunday was a beautiful day for flying and despite a head wind that added almost 2 hours to our return flight Chris and the pilot had a blast sitting in the front chatting away.

This week the weather has been beautiful. It was high 30s and damp in NY, but yesterday it was almost 80 here. Last night Breanna had her school Christmas performance and did amazing. She had a speaking part with about 5 lines and did great. They were adorable. And Chris was snapping pictures the whole time with grandmas cell phone.

They're going to let us do the MRI at home. I think we're going back to doing it with anesthesia. It's not worth the anxiety for him and I have no desire to spend several hours trying to convince him that he can do this if he's not willing to.

Thanks for checking in on us! If I don't get back to this before next Thursday Have a very Merry Christmas!

Linda

Wednesday, December 10, 2008

Last time I updated it was the beginning of November. Now we're 2 weeks away from Christmas. We've been keeping busy with Holiday parties and the like. The kids have managed to stay mostly healthy and asisde from an ear infection for Bree have avoided the dr's office. Chris has his ENT check-up appointment this afternoon. He says that when he turns his head it feels like the bones are rolling around in there. Maybe it's the ear tube. We've got scans scheduled end of this week and once again will be able to zip up and back without missing too much school or work. The kids are getting excited about Christmas. We put the tree up last weekend. Now they want the house decorated... Breanna has a speaking part in her school Christmas program. She's got about 3-4 lines to memorize and seems to just about have it.

I'll let you know as soon as I get the scan results back.

Thanks for checking on us.

Linda

Tuesday, November 4, 2008

Fall is in the air! The kids are doing allright. They both enjoyed Halloween. This year they seemed to really get into it. Breanna had a field trip to a pumpkin patch and brought home a pumpkin. We made carmel apples and decorated a haunted house (similar to a gingerbread house). We went to a Halloween party and did hay rides. Breanna was a ballerina and Chris was a pirate. Last weekend we had a cookout and had the whole family over. It was the first time in a while that everyone was off work and in town and we made good use of it.

Medically speaking the kids are doing all right. Chris met with the head/neck oncology surgeon and he said he's looking good. He's really pleased with symetrical Chris face is (the tumor at the cheekbone on the rightside almost compeltely). He gave us the "Here's what we need to watch out for" information. Wants to follow up with him in another year. He had another dentist appointment to fix a cracked/broken tooth. They had to put a silver cap on it and took impressions to put a spacer in his mouth for the tooth they pulled out last year after it became abscessed. Apparently the xrays don't show anything ready to come in there yet and they don't want everything shifting around. Breanna had her medical drama for the month and I must say it freaked me out. I was ready to take her to the ER. She woke up in the middle of the night with a really bad barking cough and she couldn't stop. She was scared and crying and couldn't breath. This went on for a while. We did the nebulizer and it didn't help. I finally took her in the shower and the steam opened up her airways. We went to the dr in the morning and she had the croup. She got a shot of some kind of steroid in the hiney (she wasn't happy about that!). She was very hoarse for about a week, but she didn't have any more attacks.

Thanks for checking on us!

Linda

Friday, October 10, 2008

We're still here. September wrapped up with Breanna back in the dr's on the 22nd. They called me from daycare and she was miserable. A trip to the dr and she had another ear infection. This time in the other ear. Dr said it looked like she had a hole in the ear drum. LOTS of pain. She was also having trouble with the asthma AGAIN. She left the dr with oral antibiotics, antibiotic ear drops and 4 more days of prednisone.

On the 23rd Chris had a appt at the dermatologist. They removed the suspicious mole on his back. We rescheduled the regular oncology appointment because we didn't have enough time that day. The pathology came back on the mole and it was OK. The following Monday Chris' school called me and he was in the nurses office with a fever. A trip to the dr and he had strep. I had the Dr take a listen to me too, I had a cough that hurt my ribs so bad I thought it was going to pull a muscle. I got some antibiotics and some really good cough medicine.

Mondays must be bad because this week Breanna was back in the dr's office. She had more trouble as last week went on and by the weekend she was sounding bad. She told me that when she takes a deep breath she can hear the 'squeek'. Wheezing. She coughed most of the night and ended up vomitting mucus Saturday and Sunday night. Took her in to see the Dr Monday and he said her ears are cleared up and she's got no infections, so it's just asthma. He put her on prednisone again (3rd time in 5 weeks). She slept good Monday night with no coughing. I wish we could get some relief without having to stay on the prednisone so much though. I'm thinking we'll move up her asthma consult. She's goes every 3 months for them to monitor her. I think we need to find some better management of this. She did great all summer, but I don't want this last month to be a preview of what the fall will be.

Tuesday Chris had a dental apptointment. They did xrays and the girl tells me "Did you know he's missing almost all of his permanent teeth?" It's a possibility. The chemo he got when he was first diagnosed would/could have affected the growing tooth buds. I talked with the dr and he beat around the bush a little and put it in a positive spin. He's got his 6 year molars. He's got his permanent eye teeth. They can see tiny permanent teeth on most of the others- but they're not where they should be at size-wise. They might just be delayed, or they might have stopped growing at completely. We'll have to watch it and see. If the baby teeth fall out and the permanent teeth aren't there yet we might have to do something to keep the rest of the teeth in place and keep them from shifting. Sounds expensive.

On top of that Medicaid wants to cut Chris off at the end of the month. He's been on TEFRA medicaid (a special type that if available for children with disabilities and is based on the childs income) since the begining and now they think he's somehow no longer having any trouble. I had filled out some paperwork earlier this year that this was not the case. Just because it's been 4 years, he's not cured. In fact with the relapse the cure word goes out the window. Last year alone his medical bills exceeded $100,000 and my private insurance only covers 90%, which is quite a lot, but obviously that 10% would be rather impossible for me without the medicaid picking it up. Medicaid said they didn't recieve the paperwork. They're sending it to me again to fill out. The case worker was doubtful that he still qualifies. Apparently because he goes to school, he doesn't seem to be sick enough to qualify under the level of care catagory... I don't know. I hope we can work this out. Appeal it if we must. I'd hate to be put in a position of not being able to take Chris to dr appt's or for tests that he needs for lack of funds.... Things were so much easier when I was a kid. :) Oh well. This problem is too big for me to handle and worry about, I'm just going to give it up to the Lord. It'll work out one way or the other....

On another note, the kids are looking forward to Halloween. I think we'll visit the pumpkin patch next weekend. Chris is going to be a pirate and Breanna is thinking about being some kind of butterfly princess. They're very excited to go visit great-Grandma this weekend. She's out in California and not doing very well. They're diagnosed her with liver cancer and say her time is limited. Please keep her in your prayers.

Thanks for checking on us and have a great day. I'll update again after we get back with some happier kid stories.

Linda

Thursday, September 18, 2008

School is back in full swing. Chris has homework everynight and seems to be doing all right with it. We zipped up to NY the begining of the month for scans and everything seems to be doing good. The vaccine trial is still not ready. Not sure what we will do for the here and now. We've got a meeting with the dr's at home next week to talk about that. Last weekend we went camping with Happy Days. It was a family event were they do the kids summer camp. It was nice out on the lake getting away from the stress and concerns of everything else. Breanna's asthma started causing her trouble last week. She went in to the dr and had an ear infection and asthma trouble. THey put her back on prednisone. It seems that she has the most trouble in the fall. Hopefully this year will be a little better with all the maintenance meds she's got. Obviously this won't be the year that she outgrows this.

Where did the summer go? It's almost halloween already.

Linda

Wednesday, August 27, 2008 11:27 AM CDT

Birthdays and Back to School!

Chris started back to school last Thursday. Seemed to enjoy it. He told me he made friends but that they made him promise not to tell me their names. Sure I believe that. ;) He also told me that one of the boys is calling him "Tiny" and that he's the smallest kid in his class. He said it's ok though because when they are fighting over a toy the teacher tells them that whoevers smallest gets to go first and than everyone else is jealous. I'm not sure that they play with toys in 1st grade though...

His birthday was Sunday and we had fun all weekend. Saturday we went and saw the new Star Wars movie. He loved that. Then we went to the toy store and he picked out some presents. Grandma got him the new starwars video game. It looks pretty cool and he was playing it a lot on Sunday. Usually he doesn't have the patience for video games, but he was very excited by this one. Sunday we went to church and then brunch with Tonya and Daniel. Than he played with friends at the house.

Breanna started school yesterday. She seemed to have a good time and be glad to be back. She is in a K4 preschool and can't wait to get some homework.

Linda

Tuesday Aug 19th

Well I'm happy to report that last week was less busy that the past several months have been. Of course now that I had time to slow down a little I've gotten a sinus infection. :) Oh well it gave us a reason to lounge around a little and enjoy our evenings until school starts back up. This week the kids start back in school. We've got meet the teacher night for Chris, Open House at Bree's school and a clinic visit to make sure he's doing all right and OK to start back.

Thanks for checking on us.

Linda

Friday, August 8, 2008

TGIF. It's been a long week. But at least it's friday. Summer vacation is wrapping up. The kids only have about a week and a half before school starts back up. Chris will be going into the first grade and Breanna is going to be in K4. This week Chris had his endocrin appointment. They want to follow up with him yearly to watch it. They drew a bunch of blood to make sure everything is ok. The brain radiation can cause some development problems, as in hormones/thyroid, and going into puberty early/late or not at all. And apparantly these problems can happen at any point so that's why they'll follow up with him forever. I also had my follow up with the peds devolopment dr regarding his neuropysch eval. I've got a 15 page report filled with results and recommendations. Seems that he's doing pretty good all in all. He does have some things that his teacher will need to be aware of to give him the best chance at a successful year. Apparently these neurocognitive issues are something that they will need to monitor every 18 -24 months because they will either stay the same or get worse. Oh well. We can deal with this. I'm working with the NY dr's to schedule his scans. We're also talking about starting him on a new vaccine therapy. I'm not sure the details on this yet, first we want to see scan results.

Breanna's doing good. Having a little trouble with her asthma and the triple digit heat indexes the last few days. It's supposed to cool down next week though. Thanks for checking in on us and have a great weekend!

Linda

Thursday, July 31, 2008

Why no updates you ask? We've been busy! Seems like this whole summer I've been running from apt to apt and traveling every other week. The begining of July Chris had his EEG and peds development appointments as well as a clinic checkup. Then Breanna got a throat infection. The next week I had an overnight business trip up to DC. Kids had a blast with Grandma and uncle Tommy (did you know that if you go to Barnes and Noble you can have them order the Strawberry Shortcake movies you can't find anywhere else!). Last week Chris had a follow-up with the Radiation dr. We talked about long-term effects and what the motion disorder dr said (possible spinal coritcol damage caused by radition). Radiation dr said it's possible. Also said the ear problems are most likely related to the radiation. Later that week Bree had her 4 month checkup with the asthma dr. She's looking pretty good. The reflux meds seem to be working well so we will continue them (they must be working because if she doesn't get it before dinner she can't eat). Then I ran up to DC for another overnight business trip. Last weekend we were working around the house. Put in a new ceiling fan and doing yard work. We went grocery shopping and found a recipe we had to try. It was grilled pork with ceaser salad. You grill the pork chops and the romaine (until it wilts at the edges). Chris helped me with the grilling (on the grill pan that fits over the burners). He's becoming a master chef. He puts on his apron and puts the spice jars in his apron pocket. Uses the tongs to flip the meat. I put Breanna to work cutting up some strawberries (with a butter knife). She said she felt like the cooking woman on Ratatouile. She did a great job dicing them up and blended some strawberry cream cheese with heavy whipping cream and confectioners sugar and stirred in the strawberries. Quite tasty. Recently Chris realized that you can buy fish at the grocery store and you don't have to go fishing and catch something. He was so excited and thought that was the coolest thing ever. I'm going to have to figure out how to cook fish so I can show him. That's about it for now. August is about here. School starts in a few weeks and right after that is Chris' birthday.

Say a prayer for our friend Katie and her family. She's been sent home on hospice.

Thanks for checking on us.

Linda

Wednesday, July 16, 2008 12:12 AM CDT

I've been slack again with updates.... Sorry about that. First everyone's been doing pretty good. The kids both went to Camp Happy Days 2 weeks ago. It's a 6 day sleep-away camp. They had a blast: tubing, fishing, cooking, derby cars, riding horses, cheering on the pig races (yep I'm not kidding), sewing a pillow, going to prom! They both really enjoyed it. Chris brought home a stomach virus and was feeling bad on Monday but he bounced back. I caught it on Wednesday. At least it was a short lived virus. Last week Chris also had appointments with pediatric development, clinic and an EEG. The EEG didn't show anything but the neurologist said that it was likely it wouldn't show up on an EEG. The ped's development appointment was long (4 hours) and they gave him a full neuropsych evaluation. It's recommended for kids that have received chemo. I'll get results in a few weeks. The clinic appointment was interesting. They decided to hold off on immunizations for a while longer. They'll have to discuss it with the team, but she mentioned they might recommend we do some low-dose chemo next. Last weekend the kids enjoyed going to VBS at the church. Breanna is still singing the theme song. :)

Yesterday was my brother Danny's birthday. He's spending it over in Iraq. HAPPY BIRTHDAY DAN!

Linda

Wednesday, June 25, 2008

What a busy 2 weeks! I'm ready for the fast pace of the last few weeks to be over and for the long lazy days of summer to be here!

What have we been up to? The kids both started day camp. They've kept them busy with fieldtrips to go skating, movies, arts and crafts, and so much more.

Breanna is recovering nicely from the tonsil/adenoid removal. She was definitely hurting for several days. She's still not 100% but getting there.

Chris and I ran up to NY for his last round of 3f8s. This was by far the most bizarre round. I'm just glad it's over! He had pain the whole week (this is a good sign that it's working) and hives. He had a bizarre mix of neuropathy (nerve pain) in his feet and hives on his heels that put him in a LOT of pain in the afternoon/evenings. He would usually be better by dinner time but mostly worn out all night. In addition to that, during his exams, one day I questioned them about a freckle on his back that seems to be raised up a little. They're calling it a mole and told us to follow up with a dermatologist at home. They recommend removing it just to be safe. His right ear with the new tubes looks all messed up. Blood clots and crud stuck in there (ENT appt this week to follow up on the new tubes). At one point they asked if I knew that he has a heart murmur. Umm No. But they're calling it a flow murmur and probably nothing to worry about (if there's an issue it'll show up on our yearly echos'). The one day after treatment they asked me if the left side of his face always droops a little. That caused a stir. We had to wait for several dr's to come down and take a look at it. Ended up getting better on it's own. Maybe the left side was just a little more swollen and puffy than the right...

We saw the motion disorder specialist at Columbia University. Nothing is definite but the dr doesn't think his arm thing is related to a genetic disorder. More likely it's related to some kind of trauma to the brain. The tumors and surgery shouldn't have caused it (wrong part of the brain), but it might be damage from the radiation. Depending on what part the damage is in depends on whether it will get worse. There's a high-tech test they can do to determine where there is damage but he said that with all Chris has been through the test would either come back normal (which wouldn't rule anything out) or uninterpretable (possibility of damage from other things and not being able to pinpoint what caused what). So he recommends we follow up with him in a year unless things get worse in that time. If it doesn't get worse in a year than it probably won't get worse (but no guarantee).

Now for some happy news. In between the treatments in NY we were able to make it to a Mets game. Someone donated box seats, and they were having a picnic so all the food was provided. Chris thought that was really cool. He ate and ate and ate. He impressed the guys behind us with his fingers in the mouth ear-splitting whistle/cheer. One night we got to go on a police boat ride down the Hudson and around the statue of liberty. Afterwards they took us back to the precinct and let the kids play with all their 'toys'. Chris got to use the bomb robot and man the controls to pick up a waterbottle 'bomb'. He also checked out the horses, machine guns, police dogs, motorcycles, etc. Precinct 20 of the NYPD also cooked us dinner and it was a good time.

Breanna and I had a girls day when we got back. We went shopping and out to her favorite girls day lunch place - Olive Garden. She gets a plain spaghetti (no sauce) and I get the soup, salad and breadsticks and she eats a little of everything.

Sorry for waiting so long to update, but can you tell we've been busy.

:)

Linda

Monday, June 9, 2008

School is out. Breanna got 2 awards on awards night - the Bible Award for learning her bible verses and the Most Unique Award. At the end of the year program the kids were too cute. They had a mix of songs, bible verses, and even did a skit (Goldielocks). It was nice. Chris had a good time at field day and did his 'cool-man' dance moves at the talent show. We went on the HappyDays trip to HardRock Park in Myrtle Beach. We had a good time. It's been scorching hot the last two weeks with heat indexes into the 100's. The kids both started a summer day camp today. They've got a packed schedule with different activities everyday - fieldtrips and much more.
Chris was very nervous about it, it's at the same place where Breanna did her preschool, but he's never been there except to pick up Breanna. Breanna's going to be there with him (although in a different group) so hopefully that'll help. With the summer daycamp, Breanna's tonsilectomy (thursday) and recovery and another NY trip it'll be July before we know it.

Happy Monday everyone!

Linda

Tuesday, May 27, 2008

A lot has been going on lately. Chris had his ear procedure May 5. Recovered pretty well. That friday we went to a minor league soccer game with Happy Days. I enjoyed the game (you sit so close to the field) and the kids seemed to like the food and goofing off with their friends. We had a nice mothers day. Did some yardwork and had a cookout. We went up for scans AND have gotten the results. Everything is still clear! His HAMA has gone away so we're going to head up and do another round of 3f8s after school gets out.

Last week Breanna had her end-of-year school field trip to the zoo. I went with her and we had a great time. She was able to feed the giraffes, ride a pony, and see all the animals. We walked all over the zoo and saw everything there was to see. This weekend Breanna, Aunt Andrea and I did a girls-day and went fishing on the pier. We didn't fish that much really, didn't catch anything but did get to see a whole family of ducks, with 6 babies, a waterbird, a snake, and some kayakers. We spent Memorial Day painting - my 2 little helpers thought that was cool, and shopping for some summer clothes.

This week we've got a bunch of end-of-the-year activities. Breanna has an awards ceremony tonight and a program on Thursday. Chris has field day and a talent show on Thursday and we've got an outing with Happy Days this weekend.

Hope you're all doing allright and have a good week!

Linda

Monday, May 5, 2008

I wrote another update since last time, but forgot to post it. You can scroll down and read that first if you want. Now I can tell you what's been going on since then. We have managed to stay out of the dr's office for a week and a half. On the 25th Chris ducked out of school early to watch the AirForce Thunderbirds practice for the air expo. He was invited to watch them practice and got to meet them afterwards and get autographs. He had a great time. On Saturday we tried to go see the airshow and spent about 3 hours stuck in traffic. We did get there eventually and the kids seemed to enjoy it. Last week I had a business trip to California. The kids had a great time with grandma and threw me a welcome home party friday night. This saturday we went to watch the Dragon Boat races. A friend was participating so we went out to cheer them on. The dragon boats look neat. They have 20 people rowing the boats, there's a drummer in the front to set the speed and a decorative dragon head and tail on the front/back. Sunday was my brother Steve's birthday and we went to a cookout at his place. He roasted a pig and fried some alligator tail. The kids had such a good time they didnt want to leave.

This morning Chris went in for his ear surgery. Nothing too major. They scraped the ear walls to get the crud out. It was really stuck in there and bled a little. They also put ear tubes in. The dr said it might be that the radiation damaged the ear wax gland (I didn't know there was such a thing) and that's why the consistency of his wax is getting it/keeping it stuck in there so well. He did pretty good. Woke up afterwards and asked me "What happened to me?" His ears will probably be pretty sore from all the digging they did.

Well that's it for now. Thanks for checking on us.

Linda

Friday April 25, 2008

I'm getting a little tired of dr's appointments. Last Tuesday Breanna went in for tonsilitis. Wednesday Chris had his clinic follow up. Thursday Breanna saw the asthma dr. This Tuesday Breanna met with the ENT and Wednesday Chris saw the neurologist and his ENT. What came out of all of those appointments? MORE appointments, follow up appointments, 2 surgeries and more specialists. ugh.

Lets talk Breanna. She's quicker to update on. The tonsilitis seems better. She had me freaked out last wednesday night though. Had a nasty asthma attack. On Thurs she saw the asthma guy. He said she sounded all right but gave me some prednisone to hold onto just in case she got worse. He also put her on some prevacid. She's been having lots of stomach trouble and the thought is it's the same reflux she had as a baby. This tuesday she saw the ENT to discuss having the tonsils taken out. He tried to give me the scare tactic on this is a serious surgery and outlined ALL the risks, do you really want to do it or just treat the infections when they come? But when I consider tonsilitis 6 times in the last year, every other time it goes into asthmatic bronchitis, it's just too much. Waiting to hear when they'll schedule this. Going to wait till school is out in June though. On the plus side she's feeling better and the reflux meds seem to be fixing the stomach issues.

Where to start with Chris. Well last week he was seen in clinic. Mostly good news there. They only gave him 1 shot (sort of testing the waters I guess) and will check to see if his titer increases in a month. His lab work showed his potasium was high. NP said that wasn't a concern unless the creatine was low. Oh it is a little low. Well he's probably just a little dehydrated. OK... I don't know. I think I'll watch to see what it looks like next month. The dr also thinks he needs a follow up with the radiation oncologist, and endocrinologist, and the head/neck oncologist. And she'll work on the neuro/pysch eval.

Wednesday he saw the neurologist and the ENT. Neurologist didn't seem to understand what I was explaining on the arm. Said that it's a good idea to see the movement disorder guy. Wants Chris to have another EEG (it's been a while - this scan reads the brain waves and looks for seizure activity) and follow up with him after we see the movement guy. Also had some blood drawn to see the level of the seizure meds in his body (I guess to see how he's metabolizing it). At the ENT appointmet the dr had to pull some wax out of chris' ear. Got the first piece. Went for the second and Chris screamed and screamed. Dr gave up said it's stuck to the ear/bone/whatever and he needs to get it out under sedation. I brought up that he's had 6 ear infections in the last 6 months (I was surprised when I counted the other day) and should we deal with that at the same time. He agreed and they're scheduling that too. They also took ear molds to get some custom ear plugs so he can swim this summer.

Hopefully we'll avoid the dr's for a few weeks. Everyones trying to schedule something in MAY and I just can't fit it all in. I'm going to keep the stuff thats most important and push everything else back to june/july/august. Today Chris was invited to watch the Thunderbirds (air force pilots) practice for the air show tomorrow. After that he's got a birthday party to go to and Breanna and I might do something fun tonight. Thanks for checking on us.

Linda

Wednesday, April 16, 2008

D Day (diagnosis day)

On this day 4 years ago I heard the word neuroblastoma for the first time. I had known something was seriously wrong for a while (he had a golf ball size lump on his face). A week before we had done xrays and were told it looked like his cheekbone was eaten away. 3 days before he had a biopsy of the lump, 2 days before we got the results that it was definitely cancer, a day before we met with the oncologist and scheduled lots of test and on this day they scanned him head to toe and were able to determine that this was stage IV neuroblastoma. The next couple months were a blur.

Today we head back to same office where this all started 4 years ago. Tonight we celebrate that Chris is still here to fight.

On a seperate note, Breanna stayed home from school yesterday with a fever. I took her to the Dr and she's got tonsilitis AGAIN. That makes 6 for the year and now the ENT can take them out.

Linda

Friday, April 11, 2008

I started to update this twice in the last 2 weeks and got pulled away to do something else. Things here are going pretty well. Chris seems to have recovered from the ear infection and the kids have managed to stay out of the dr's office for 2 weeks. I did end up going in for allergies.

On the medical front, Chris goes into clinic on Wednesday for a checkup and to restart the vaccination process. Chris did get vaccinations as a baby but then chemo and transplant wiped those out. We had just started to revaccinate in fall 05 and a month later he relapsed and the chemo wiped it out again. We'll have to wait in clinic for 2 hours after the revaccinations and draw some blood to see if his body knows what to do with them. I'll have to think of something to bribe him with because it will be 4 or 5 shots in the first dose.

On the home front things are going well. I made the kids their first root beer float last weekend. They don't usually get soda, so they thought that was quite a treat. Last weekend they also enjoyed the weather and were out playing in the sprinkler. This weekend should be another warm one.

Have a good weekend everyone!

Linda

Friday, March 28, 2008

Chris ended up going in to see the dr Monday afternoon. They gave him a shot of rocephin (in the hinny- he was NOT happy about that). It seems to have done the trick he hasn't had a fever since! And his belly is doing better as well since we stopped that 2nd antibiotic. Dr said his ears looked better but that it seemed to be going into a upper respiratory infection. He's got his energy back and seems more like himself. We've done the increased dose of keppra for a week now and the zoning out seems better too. No word from the dr's at Columbia yet, I'll think I'm going to have to call them back. Breanna's doing better as well. She's still got allergy issues but we haven't been outside as much this week.

Thanks everyone for the kind words/support/phone calls. Raising kids is hard work and when you throw in health issues and trying to be both the mom and the dad for them... I couldn't do this without the support of my parents, my brothers and all of you. You lift me up in my moments of weakness. I also have to give credit to the Lord. Even though I feel spiritually impaired most of the time I can see how he is working in my life.

Now for some hightlights of the week. Tuesday we went and saw My Little Ponies Biggest Tea party. Breanna LOVED it. Chris said it would have been better if it was Spiderman or Thomas the Train. At one point one of the ponies was talking about how she had a dream about flowers and rainbows and whatever. Chris leans over to me and tells me "Not me. I dream about hunting deer." He's really taken by the thought of hunting or fishing for dinner. Here's a recipe Chris and Uncle Tommy made us earlier this week:

Hedgehog Meatloaf
Prepare meatloaf as normal. Insert 2 black olives for eyes. After meatloaf is done cooking insert uncooked spaghetti 'quills'. It was adorable and both kids loved it!

Thanks again everyone. Have a great weekend!

Linda

Monday, March 24, 2008

Where to start...

Last Monday I got a call in the afternoon from the neurologist in NY. Ever since she saw Chris a month ago she's been trying to find a movement disorder specialist to send him to. She's concerned and wants a specialist to take a look at him. She mentioned dystonia as a possibility but said she isn't the expert. The experts are apparently at Columbia University in NY. That's on the west side of the city and up another 100 blocks from the Ronald so I will need to find out if the Ronald shuttle can take me there and how to get the bus back. This all has me concerned. Researchcing movement disorders and dystonia is not reassuring. They is no cure for these kinds of things from what I see. Treatments range from oral medication to botox shots to implanting a pump in the stomach and wiring it around his stomach and into his spinal column. They also do surgery for some cases, everything from burning a hole in the part of the brain that is causing the problem to severing the nerves in the spine that are misfiring to deep brain stimulation. Causes could be genetic (which means I need to worry about Breanna possibly developing something) to secondary - meaning caused by trauma to the brain, infection, reaction to medication, stroke, tumors or toxins. A secondary cause could very well be possible. I am not aware of a genetic link on my side of the family but am not sure about his dad's side. If any of the bridgwaters see this and could let me know that would be great. The more research I try to do on the internet the more distrubed I get. It seems that it could be that what I'm seeing now is as bad as it will get or that it will get progressively worse to include multiple body parts and cause him slight-severe difficulty is everyday activities. Or maybe it's not a movement disorder... I don't know. There seems to be dozens of different movement disorders and everything I read recommends you see a specialist that understands how one differs from another. I've called Columbia and am waiting on a call back to schedule an appointment.

Before I heard from NY I had called the local neurologist. They are booked through July so I left a msg for the nurse with my concerns. She called me back after I talked to NY and said she would get me worked in sooner. We're upping the meds for the seizures and can discuss everything when we come in mid April. She said MUSC has a movement disorder dr and she would see if we can be seen by her. Apparently she only sees patients on fridays and the nurse wasn't sure if she is accepting new patients.

Tuesday morning Chris wakes up complaining that his ear hurts and he had a low grade fever. Grandpa took him in to the Dr and he's got another(or maybe still the same) dbl ear infection. He got a different antibiotic (he had finished 10 days of augmentin 4 days before this) and we started increasing the dose of keppra (seizure med). We will increase this slowly over the next month. He didn't have any other complaints the rest of the week (until sunday but I'll get to that later). He did sweat like crazy each night, soaking his shirt and pillow - maybe somehow because his body was fighting the infection?

He had a great easter party at school and easter egg hunt. Breanna enjoyed her class easter party. She only found 1 egg in the egg hunt and was disappointed in that. We colored eggs this weekend and went to Chuck E cheese's with friends Saturday night. We had an easter egg hunt on Sunday with some pretty pink eggs for her and camo-colored eggs for him. They loved that. Breanna's face around her lips were blueish after the egg hunt so we went inside and took some asthma meds. Gotta love allergy season. We had a big dinner with the family Sunday afternoon. Chris fell asleep on the couch shortly before dinner and didn't want to wake up for it. His stomach was bothering him all day and at bedtime he was running a 101 fever. I can't understand why he should have a fever while he's still on the antibiotic. The stomach thing is probably from the antibiotic. I've got a call in to the dr to see if he should be seen.

So that's where we are. Hope you all had a great Easter and have a good week.

Linda

Monday, March 17, 2008

Breanna met with the ENT last Monday. Her tonsils looked good and she has only had tonsilitis 5 times in the last year and the ENT wants to wait until she's had it 6 times in 12 months before he'll take out her tonsils. So if she gets it again before the end of May she'll have her 6 in 12 months. She seems to be feeling better though.

Chris is getting over the ear infections. Man that boy can sleep. We were busy early in the week with errands after work and on Thursday it was supposed to be a relaxing evening. Chris fell asleep before dinner at 5 and wouldn't wake back up. I was able to get him to take his medicine and change him into his jammies but that was it. He slept until 5:30 the next morning when I woke him for school. He was chipper Friday morning though so that was nice. Better than the slug I had to drag out of bed the begining of the week.

We had a good weekend. We did some work around the house on Sat and used sunday to relax. Had a picnic lunch in the park and Uncle Tommy over for dinner.

This week should be a little calmer. Chris is out for Spring Break starting on Thursday. Both kids have Easter parties at school this week. I'm been watching Chris and thinking about scheduling an appt with the neurologist. I've been seeing some wierd neuro-ish issues (both arms seem to be acting strange, more staring spells, and he's got a wierd tongue thing) They seem to be worse when he's tired so I'll have to see if its any better now that he's caught up on his sleep a little (time change messed us all up on our sleep).

Hope everyone has a good week!

Linda

Monday, March 10, 2008

Last week was pretty busy. Tuesday was my Mom's birthday and we went out to dinner. The kids were pretty good and we had a great time. They have both decided that they want to go back to Applebees for their birthdays so they can get everyone to sing to them too. Wednesday morning Chris woke up complaining that his ear was burning and that "I can't take it anymore." He doesn't usually complain so that was surprising. He had no fever though. I gave him some tylenol and some ear drops from last time and it took away the pain. He went to school and actually made it through the day. That afternoon I took him in to see the dr and both his ears looked really nasty. He also had a temp of 102. It's times like this that I'm glad we don't have a port in (would have required at least 48 hours inpatient to ensure he didn't have a line infection). They're giving him some more antibiotics. He follows up with the ENT in mid april. He's had 2 ear infections since the last ent apt in mid january. They always seem to clear up in time to avoid getting tubes put in.

Breanna is doing better though. She's finished up her antibiotic. She's got an apt this afternoon to talk with the ENT about removing her tonsils. Maybe it'll even help with her asthma. The pine pollen has started falling here covering the cars in a blanket of yellow (ick!), I'm hoping to avoid asthma complications this spring, but time will tell.

We had a big storm blow through last week with a bunch or rain and wind. We took advantage of some of the wind and flew kites on Saturday. The kids loved it. The were working on 'art projects' Saturday with some of that color wonder finger paint(it only paints on the color wonder paper!). It was interesting to see their different styles. Chris dipped his fingers in the paint and and drew a smiley face that reminded me of the face Tom Hanks paints on the volleyball in the movie Cast Away. :-) Breanna dug her fingers into her paint and glopped it onto the paper and then smeared it all over the page covering every inch mixing all the colors together. It could almost pass for a sunset.

Alright. Have a good week everyone!

Linda

Monday, March 3, 2008 9:42 AM CST

Wow. I've been lazy. I haven't checked my email in 2 weeks either... We got home from NY feb 16th and have been busy celebrating the good scan results and busy working. Chris had a clinic appt the week after we got home. Everything looks good and we're tentatively thinking about doing some revacinations next time we're there (mid april). They like to give the first dose of revacinations and than wait 2 hours and draw blood to check the titers (I think basically to see if his body is able to create the response we want it to). Last week I took Chris to the dentist for a cleaning. Good news no cavities. We didn't see his usual dentist though and I'm not as confident that the one we saw is experienced with the long-term effects of cancer/treatments. We did an panoramic xray and there were some things that might cause problems. Missing permanent teeth. Some smaller than they should be... The dentist said that it could be a genetic thing or the result of some type of medical condition (he couldn't remember the name of it but said it causes people to not sweat on half their body and have thin hair). I told him that Chris' thin hair has more to do with the chemo and radiation he's had, that it wasn't always thin. The dr than said that it might be the result of medical treatment. We won't know the full extent of it for years still, so it's nothing to worry about now. We're not out-of-the-woods yet in concerns to the neuroblastoma, so if we are lucky enough to have him still around in a few years, those long-tem side effects will be something we'll deal with.

I had to take Breanna in to the dr on thursday. She's been congested and sorta sick for a week or two. On thursday she woke up crying b/c her throat hurt, she had a headache and it hurt to swallow. No fever and her throat didn't look really red, but her tonsils were extremely swollen. Dr said it's tonsilitis. We decided it's time to take them out. We'll meet with the ENT in a few days and see about scheduling that.

We had a nice weekend. On Saturday we had a pig roast. My little brother Dan is heading to Iraq for 6 months and my mom's birthday is tomorrow. We had tons of food and really enjoyed hanging out all day.

Thanks for checking on us. Please keep all the other cancer warriors in your prayers.

Linda

Friday, February 22, 2008

Scans are clean!

more info later

Monday, February 18, 2008

We made it home safe and sound Saturday afternoon. Let me back track a little though. We flew up to NY on Tuesday. Our angel flights got cancelled due to the severe weather system that was causing trouble up north. I ended up renting a car and driving 3 hours to Charlotte were I took a commercial flight into LaGuardia. Luckily our commercial flights weren't cancelled and we didn't have any trouble getting out of Charlotte or making our connection in Atlanta. When we got into LaGuardia we had some issues. We couldn't park the plane because the terminal we were to park at had another plane that was de-icing their wings before they could take off. That added another 20 mins. When we finally could pull up, we couldn't get off the plane because the terminal attendant had left her post and we had to wait for her to come back and bring the arm down so we could get off the plane. That took another 15 mins. When we go to get the luggage I'm missing my booster seat. I have to stand around and wait for it and than fill out the incidence report. 20 more mins. AirTran promises to find it and deliver it to the Ronald when they do. We then find a cab and ride out to the Ronald. It was 1:30 am by the time we get there. It's after 2 by the time we are checked in, beds made and ready to go to sleep.

Morning came too soon and we had to be at the hospital by 7 am on Wednesday. I drag Chris out of bed and we set out the door. There's snow on the ground and it's raining. Chris wears his rain boots and was remarkable well prepared for the icy streets. Have I mentioned he's a great packer. It was his idea to bring his rain boots. I'm stepping slowly trying not to slip on the ice or step in an icy cold puddle. Wednesday morning Chris had his bone marrow biopsies. We got to the hospital at 7, he got his IV in and we waited around until the playroom opened when he would play until it was time for his procedure. The procedure went very well and it suprised me how routine it is to hold my son as they give him 'milky medicine' to make him go to sleep. Remembering to support his head because he will go limp rather soon after they push the drug. I then leave the room so they can drill 4 holes in his hips and go get a cup of coffee. It only takes about 15 mins to do the procedure and maybe another 15 for him to wake up in the recovery room and for them to bring him out to me. He woke up in a very 'drunk' state. He didn't want me to hold him for a while till he got his senses back. He wanted to walk. Which was interesting because he had no balance and was stumbling/staggering around. After a bowl of fruitloops he seemed to be recovered though. That afternoon he had his mibg injection and then we left the hospital. We got back to the ronald by about 4, hit the playroom for a little bit and then went out to dinner.

Thursday was another early morning. MIBG scan at 8, get there by 7:30, get some breakfast and then meet with the neurologist at 11:30. The neurologist called Chris an interesting case, then went on to say that's not something you want to be. They can't explain the increased tone in the left arm. There are a few possible explanations, but nothing definite. She ordered a spine MRI, just to have a look see. We got out of the hospital early on Thursday and went back to the Ronald. That night the house took us to Chelsea Pier to go bowling. The kids had a blast. Air Tran found the booster and delivered it!

Friday was MRI at 8. Chris amazed me with how well he did. Normally he has no problem holding still for it, but it takes at least 5 mins to talk him into getting on the table. This time I told him that we could spend all morning talking about getting up on the table or we could listen to the man, do exactly what he says and be done with it in 30 mins. It worked like a charm. He listened perfectly and we were out of their in record time. We went back up to the clinic, Chris had about 20 mins to drink the CT contrast. He got it all in and then threw it ALL back up. UGH. We waited a little bit and then had to do it all over again. Luckily he kept it down the second time and we were only a little late for the CT scan (they're always late anyways). He once again listened very well to the technician and we were in and out of CT in record time.

After all the scans were done we caught a bus and made our way to the Metropolitan Museum of Art. Chris wanted to see their Arms and Armor display. It was quite impressive. We had a late lunch there and wandered around the museum for a few hours. We stopped in the gift shop where Chris picked out a knight in armor and a catapult for doing so well on his scans. And he picked out a princess book for his sister.

Still no news on scan results, should hear something Tuesday/Wednesday-ish. They also will test his blood for a HAMA which will tell us if he needs more 3f8s.

Thanks for checking in on us. I'll update more when I have results.

Linda

Saturday, February 16, 2008 6:01 AM CST

well we survived the travel and scan week. We're headed home today. No results yet. But feeling less stresed. Chris was a rock star with the scans. More info later. gotta pack.

Linda

Tuesday, February 12, 2008

Time flies when you're stressed out. :) Everyone is doing well. Well mostly. Breanna's trying to decide if she's going to get sick or not. Shes' a little under the weather, but not enough to warrant going to the dr yet. She is excited about Valentines day though. It's her kind of holiday. Lots of hearts, every store you go into is decorated in pink. Oh and the chocolate.

Chris and I are headed to NY for scans. I'd love to say that the stress of scan week gets better with time, but it doesn't. I just was checking on a little girl that went to NY for routine scans last week (she had clean scans for a while now after a relapse) only to be sent home on palliative care. Her cancer has come back and it's too severe to treat. You never know what you're going to learn in those scans and the possibilities are frightening. Chris doesn't have any new aches and pains or other general wierdness to cause me concern. But cancer is always there at the back of my mind. A shadow on the good times, leaving you to wonder how long your good fortune can hold out. There is no rhyme or reason with cancer. There is no predictable pattern and there is no guarantees.

Weather's cold up in NY. Our flights got canceled because of the conditions. Small planes don't do as well in the icy conditions. We had to jump around and make backup plans. We'll get there. I've got to get a rental car and drive 3 hours to Charlotte were I was able to get a cheap last minute flight. Hopefully there will be clear skies this weekend when we come home. Roundtrip was too expensive.

Please keep us in your prayers this week for safe travels and good news on the scans. Also keep all the other fighters and families that are in the thick of their battle in your prayers.

Thanks,

Linda

Thursday, January 31, 2008

Chris and Breanna had a discussion the other day on what the seasons were. My smart daughter told Chris they are summer, winter, spring and fall. Chris responded that NO, they are deer season, hedgehog season, rabbit season, squirrel season, bear season, gator season, moose season and fishing season. He's hoping to go bunny hunting this weekend with Uncle Steve. If so Bree and I will go do something fun and girly.

Chris had a ENT appointment last wednesday. They checked his hearing and he's now old enough to participate better with it. He's lost a little more in the high-pitch range and just a little in the speech range - but still adequate. They also took 'pictures' in his ears to see if there was fluid behind the eardrum. The left was good but the right wasn't. The dr said that we would check again in 3 mos. That fluid in just the one ear wasn't worth doing tubes for. We'll also check the hearing in 6 mos to see if it is still declining.

On Friday he had an OT eval. He has increased tone in the left arm. What that means is that the muscles are flexed when they're not supposed to be. It is a very subtle issue and not an all-the-time issue. We were able to watch it happen as he got tired (they had him jumping on an excercise trampoline and after 20 jumps the muscles in the shoulder and arm pinched and the arm went stiff). Interesting to understand what was going on. The OT said that if this is a brain issue we are not likely to be able to reverse it. BUt that it is only a minor issue right now. We want to encourage him to use it (if he doesn't it would get worse) and avoid IVs in the left arm (which would cause him to not use it for several days at a time). When the muscles start to go into overdrive we can relax them with heat or with stretching (she showed me how to do this). She also said that it will be worse in the cold weather because cold weather causes the muscles to flex more. At this time she doesn't see a need for OT. But if anything changes we just come back.

I started this update on Tuesday and got pulled away from it. Now it's thursday. Chris stayed home from school today because he woke up with a fever and complaining of ear pain. So much for ears that looked nice a week ago. The left ear hurts he says which is not usual for him. Usually it's the right ear that has the problems... Gotta wait for the drs office to open so I can get him in.

Have a good weekend!

Linda

Tuesday, January 22, 2008

Chris' clinic appt on the 10th went well. We follow up in 6 weeks. I am STILL waiting for them to recommend an OT person close to us. If I don't hear something soon I'm just going to go through the phonebook... We got Chris' blood drawn for NY with only a little fuss and aside from the arm issue the appt was quite easy. Breanna had her checkup on the 10th as well. She's doing great. I think she's weighing in at 34 lbs and maybe 36 inches. She ended up getting 3 shots that she was not very happy about and left the dr's office with a handful of stickers and lollipops.

The 11th was PaPa's Birthday - Happy Birthday Papa!

On the 12th We had her birthday party (and PaPa's!) complete with a pinata, pin the tail on the donkey, princess punch(rainbow sherbert and 7up) and balloons. Everyone seemed to have a good time. After the party Breanna went to hang out with Tonya, church and dinner at her mom's house and I took Chris out for a surprise. Freestyle Motorcross was in town and I thought he might enjoy it. The show didn't start until 7:30 and I kept Chris in suspense about what we were going to do until we got to our seats and he saw the coliseum set up with ramps and all. For those that don't follow freestyle motorcross (I'm one of you) - it's like dirtbikes and they do tricks on the ramps. Big jumps, no hands, kick the feet to the side or the front, flips, etc. Chris had a blast! By the time it was done he was tired, but he wasn't going to turn his head away until the show was over.

The 13th was Great-Grandma's birthday - Happy Birthday GRANDMA!

Last week was more of the usual - work and school. Several days after dinner we would take a walk. Breanna insisted on wearing her loud shoes (tap shoes) for the walks - To scare away any monsters, snakes and rats. What a sweetheart trying to 'protect' her family. I guess being a 4 year old has a lot more responsibilities than being a 3 year old - protecting your family from monster being one of them...

On Friday I went to look at a new preschool for Breanna. This one is more preschool - less daycare. They actually have workbooks the children do and a classroom with desks and all. Bree is very smart and interested in learning. I think she'll really enjoy it. It's a church run program so they will also do bible stories and such. I brought Breanna with me to check it out and she was SO excited. She'll start in 2 weeks.

Saturday was a dreary rainy day. We got up early and made pancake puffs. Then I tackled cleaning and straightening up the house. I went through the kids room and purged all the cloths that were outgrown. Straightened out the closet and vacuumed. Then I tackled my room. Rearranged furniture and cleaned up the junk that seems to accumulate over time. Grandma Susie worked to get an old computer set up for the kids to use. Chris loves the starfall.com website. It is one of the ones his teacher recommended. At lunchtime We went to the movies and saw the veggie tales movie - The Pirates That Don't Do Anything! The kids thoroughly enjoyed it and Chris can't wait to tell Uncle Tom all about it. After waking up so early the kids needed a rest. While dinner was cooking they made hand cookies and we decorated them afterwards. We traced our hands out of cookie dough, baked them and then mixed food coloring into vanilla frosting to make a bunch of different colored icing. Then we used our hands to spread the frosting over our hand cookies. Add a little sprinkles and viola. It was a lot of fun - and tasty. :)

Sunday we slept in a little. I woke up with quite a headache and Chris took care of me. He made me a waffle and brought it to me on a tray. He also got me a glass of milk and wiped my mouth with a napkin when I wasn't paying attention. Quite thoughtful that boy. After the excedrin kicked in I was feeling better and we went out to Best Buy for a wireless modem and some kids computer learning games and then lunch at Applebees. When we got home I tried to convince the kids they wanted to take a nap but it was me who ended up sleeping and they watched a movie (and brought every pillow in the house out to the living room to make a fort/castle). After that they decided that I should go run some errands and take them over to Ms Nellies house. So I got some grocery shopping done while they visited with Ms Nellie.

Sunday night Chris slept in my bed and Monday morning when we woke up he looks at me and asks me "How will the docters know if my cancer comes back?" It was enough to get my attention. I've tried to include him in understanding why he has to have scans and have blood tests and everything but it certainly caught me off guard to have that as his first thought of the morning. We talked about it for a little bit and then he was ready to get some breakfast.

Well I think this update is long enough already. Have a good week.

Linda

Monday, January 21, 2008 6:39 PM CST

just a quick update tonight. Everyone's doing good. Check back tomorrow for a real update. I'll have stories to share about the 'seasons', motorcross, pirates, and some deep thoughts from a 5 year old.....

Linda

Tuesday, January 8, 2008

Another week has gone by and Breanna is now 4 years old. She really seems to have grown up over night. She had a great birthday and is quite proud to call herself a 4yr old. Chris started back to school last Thursday. He was too exhausted to have birthday dinner and cake with us, he fell asleep on the couch at 5pm and wouldn't wake back up for anything. I got his jammies on and put him to bed at 8 where he told me he was starving and then he rolled over and pulled the blankies over his head. In the morning he ate his breakfast and asked whether he ate any of Breannas cake. He wasn't upset that he missed it, just seemed like he didn't remember. He did better after school on Friday and was awake for dinner and went to bed at the regular time.

On Saturday PaPa took Breanna out shopping for her birhtday while Chris and I cleaned house and did laundry. We got some grocery shopping done and went to a friends birthday party in the afternoon. On Sunday Breanna walked into the cars side-view mirror at church and gave herself a nice bruise on her forehead.

Chris has started asking about NY, when we're going back, when he has to start shots again, etc. Of course all that is up in the air until we find out the hama results. They were positive 3 weeks ago. We test again on Thursday and will find out next week whether we go back up in a few weeks or test again in a couple weeks. Last time it took almost 6 months to go away. The time before that it took 1 month to go away. We'll see.

The NY neurologist got back to me on the MRI. He said that everything looks normal. That he agrees there is a 'real phenomenon' going on but that he doesn't think it's the result of a dangerous process... But he still encourages OT eval and treatment. It is quite strange. I'll get the OT eval and will watch it I guess. One the plus side there is nothing bad going on in his brain that explains this, but that is also a little bothersome. Dr's still don't know all there is to know about the brain. We can't do much about it so I'll try not to worry.

On Thursday Chris has his clinic checkup and HAMA draw. Afterwards Breanna has her 4 year old well-check appointment.

Have a good week everyone!

Linda

Wednesday, January 2, 2008 6:39 AM CST

Happy New Year! Tomorrow is Breanna's 4th birthday. She's so excited. I'll try and get some updated photos up. Yesterday we had a great day (off work) we went shopping in the morning (great time to do it as nobody was out and about at 9am new years day) did some yard work and tried to organize the house/yard a little. New Years eve the kids TRIED to stay up till midnight, but were asleep before 10. I tivo'd the ball drop so they could watch it in the morning. Last weekend I took the kids to the children's museum in columbia with some friends. They had a blast. Breanna was rather frightened the other night of the 'green eyed monster'. It apparently was on Berenstein Bears and she didn't get it. She was certain the green eyed monster was going to come and eat her. "I'm just the right size" (for it to eat). It was an interesting convesation. Her half-hysterical and me trying to keep a straight face and explain it. Last week I only had Christmas day off, but we still managed to have some fun in the afternoons. Breanna's black eye is looking much better. We spent a lot of time outside coloring with sidewalk chalk and scootering (that's how Breanna got the black eye in the first place-racing scooters with Chris Christmas morning). Christmas Day we had a great time. We different family dropping in and out all day and aside from the black eye it was a great day. Chris' prize possessions include a guitar, scooter, Hess monster truck with motercycle guys on the back, airplanes, rescue helicopters, etc. Breanna got Barbies galore. She's got some that look almost too pretty to play with. She also got ponies, and a 'pooper scooper barbie'. I got it for her because it is a barbie with a dog on a leash. I didn't notice that you feed the dog little dog food magnets and then lift his tail and they come out the other end. And Barbie has a pooper scooper to pick them up. I guess it's a good thing to teach kids responsibility but I told Breanna she couldn't have any toys that pee'd or poo'd... And tiny magnets are a bad idea for little kids (it'll rip up their intestines in they swallow them) so I took away all the doggy food.

NY dr's called. Chris is HAMA positive so we recheck in a 2 weeks to see when he can get another round of 3f8s in. The neurologist recieved the MRI but was out of the office until today so hasn't read it yet. He will get back to me this week on it. I still need to get a PT/OT eval. It seems the school will work with him on any PT/OT help he needs that impacts his learning... But not as much help as he's going to need probably. We'll see at least they are listening to me.

Next week we go to clinic for Chris's checkup and hama draw and then we rush over to Breanna's 4 yr old checkup. I had to reschedule Chris' ENT appointment and that's at the end of the month. I wouldn't be surprised if they want to put ear tubes in.

Sorry for the backwards update, I had posted one last week but it mustn't have saved it.

Have a good week!

Linda

Friday, December 21, 2007 10:32 AM CST

Only four days to Christmas and what have we been up to you ask? I think we've baked 8 dozen cookies; made a gingerbread house, tree and people; finished 98% of the christmas shopping and 2% of the wrapping; had a birthday party for my brother; decorated the tree (FINALLY); followed up with Breanna's ENT (everything is looking good, we follow up in 3 months); did an MRI of the brain on Chris; took him in for his HAMA draw and sent it fedex to NY; conferenced with Chris' teachers to start some paperwork so he can get any other services he might need; had a luncheon/holiday party at Breanna's school; and played phone tag for a day and a half with the local hospital about Chris' MRI. Finally got a hold of someone and had them fax me the results and send the copy on disk to NY. MRI good news - it shows no tumors. In fact it shows pretty much nothing of note. In the past the reports have always said something like they saw the evidence of previous craniotomy, etc, etc. But this was a different hospital reading the scan. I wonder if they didn't think that was worth mentioning. I'm sure that's why the neurologist wanted the scan on disk so they could read it themselves (they might have different ideas on what is important enough to mention). So it would seem whatever the problem is it is caused by something very subtle... Hopefully the neurologist will get the scan today and take a look at it. At best I'll hear something today (doubt it though) at worst I would think another week. I feel better that there wasn't anything MAJOR going on in that head of his. He's doing pretty good. Had some residual pain wednesday night and was screaming because his feet hurt BAD. But I was able to manage it with motrin and hot/cold packs. Still a little sleepier than usual, but not as bad. He's out of school now till January. I've got to go call and see if I can get an appointment for myself today. I've got a cold that's settling into my chest. In case I don't update before than, MERRY CHRISTMAS EVERYONE!

Linda

Friday, December 21, 2007

Wednesday, December 12, 2007

We are back from NY. The rest of the treatment went pretty much the same. It was a 'good' round of 3f8s with a good bit of pain (means it's working). We were finally able to see the neurologist on Friday. Actually we saw them a couple times during the week, but it wasn't until Friday afternoon that they were able to exam Chris (for his left arm issue). The head neurologist watched him playing in the playroom for a while, they checked some things and he said it's a form of paralysis. I don't remember the term he used, but it's something where it shows up when he is not thinking about how he's using his arm. More so when he is distracted or tired. He said it is definitely a brain issue. It will only get worse with time (the longer it goes on the less he will use his arm, the less strength/tone/etc the arm has...). He said this type of thing is caused by a lesion on the brain. The lesion could be a tumor or something like scar tissue. He's had enough 'head trauma' to explain it between the brain surgery and radiation. So the first thing to do is get an MRI done to find out what's going on in there. Next we need an OT/PT eval and to get into OT/PT several days a week to try and stop any further loss (maybe regain as well). We're going to try and get all this done at home, but if we have problems, we can get it schedueled in NY rather easily. So for now we wait to find out if this is a long-term side effect of previous treatment or a sign of new disease growth. We had scans in late October that reassure me a little, but not completely.

Chris is doing all right. Very wore out from last weeks treatments. Monday he came home from school sick. He threw up at lunch and was pale/pasty/puny looking. He felt a little better than ended up taking a nap from 4pm to 8pm. He naps hard and would not wake up for anything. When he did wake up he wanted food but didn't eat much. Played for maybe an hour and was ready for bed. Tuesday he only took a 3 hr nap and managed a few bites of dinner. We'll see how today goes.

Thanks for the thoughts and prayers.

Linda

Friday, December 7, 2007 1:28 AM CST

Good Morning. I can't sleep so I finally gave up on tossing and turning and decided to do something. Things are going ok. Treatment is rough. He's having most of the possible side effects. Lost of pain. High heart rate. Hives. Oxygen levels drop low until I remind him to breathe. And residual pain. Bad residual pain. Woke him up from a dead sleep the other night screaming in pain. I've got meds for that though. I think I heard the residual pain thing is worse for bigger kids.... maybe. We've been trying to stay busy. Tuesday night the house took a group of us to see the Rockettes. We had dinner in the Roxy room and saw the Christmas Spectacular Show. Chris enjoyed it. Got his picture taken with Santa and 2 of the Rockettes. Wednesday the hospital had a Chanukah party with carnival type games and that night the House did a light the night celebration as well.

We've tried to see neurology all week. It's making it harder for them to evaluate him because he's got an IV in his left arm and REFUSES to move it because the IV is in it. Tomorrow they'll take it out and let neuro get a good exam in. We'll see what they recommend next. I've heard some buzz about maybe an EEG, MRI, MRA... but who knows...

It's cold here. Very cold. We've seen it snowing a couple of times. Not really sticking to the ground, but kinda pretty. Well that's all for now.

good night.

Linda

Tuesday, December 4, 2007

Sometimes I struck with how much this all doesn't seem like it's my life and that it must be a dream that I'll wake up from. Example. We had to be in NY by Monday morning at 8am. I was able to book a flight through one of the charity organizations. We were even flying with another family we know from Charleston that also had a monday appointment at Sloan. We stopped in Raleigh on the way up and the pilot tells us that the alternator was going on and off-line on th eway up and that it wouldn't be safe to continue into NY especially considering the weather they were having in NY. They offered to fly us home or help see if they could find another way to NY. They ended up getting us a commercial flight for Monday morning at 6am. They also got us hotel rooms for Sunday night AND took us out to dinner. In spite of the inconvenience of it all they went out of there way to accomodate us. And we're used to plans changing.

Monday morning we get up at 3:45 to make our flight. We ended up getting into NY a little early and had our luggage and were waiting on a ride at 8am. On the ride to the Ronald both Chris and Justin got sick in the car. We get to the Ronald and drop our bags off then run to the hospital. Mondays are always slow days at the hospital. There's just a lot that has to be done. We rushed and got the finger stick done. Then had a little time to get breakfast. After we're done with breakfast we find our nurse to see if we can do the G-shot (have to wait until after the labs are back on Mondays). We were fine to do the shot but they wanted to get his IV in first. That was an experience. Probably because Chris had been up so early he threw a MAJOR fit. When we're done with the IV he's almost hyperventilating that he doesn't want to start crying again if we do the shot now.... After that we have a little bit of time to calm down. I get Chris to go play in the playroom to distract him a little. Shortly after that it's time to see the dr. They go over all his meds and the correct doses on what I can give him in the evenings should he have any residual pain (It's a lot more than what it was before). Than we have to wait for the pharmacy to make all his pre-meds and the 3f8s. We wait and wait and finally start the premeds at noon.

Monday's treatment went pretty well as far as first days go. It was kinda like our first day of the first round. It really hit him hard and his body wasn't sure what hit it. His heart rate got up to 200. He used 4 rescues of pain meds. Hives never came but he was itching and got 2 rescues of vistaril/benadryl. His oxygen level dropped into the high 80s and I snuck the oxygen tube in to his face while he was half asleep to get it back up. By about 4pm his heart rate was low 170s and they were going to let us go, but then his temperature was too high 38.3 Celcius. We waited to see if maybe it would come down in a few mins and it did a little, but they observed him for a while longer before we got to go. We hit McD's on the way to the house for dinner and he was in a descent mood. He didn't have any residual pain Monday night and was very tired.

Gotta run. I'll update more later.

Tuesday, November 27, 2007

Well I didn't get around to posting again last week. Monday I took Chris to the GP and he had bronchitis. They also tested his arm for strength and motion and he has strength in it and is able to move it around fully. Dr said to keep an eye on it. I told them that he has strength in it and can move it fully when he's thinking about it. It seems to be more of a subconscious thing. When he's not thinking about how he holds his arm then I notice it. Who knows. I'll keep an eye on it and see if it gets worse. Hopefully I can get in to see the neurologist while we're in NY. Breanna's checkup with the asthma dr went very well. She's over this last attack and can go back onto her maintenance drugs instead of the reactive drugs. She was excited to know that she's allowed to run again. Grandma Susie went in to see the dr last monday as well and she has bronchitis/pneumonia. We spent the begining on the week trying to take it easy and take care of Grandma and Chris. They were both feeling a little better by Thanksgiving. Friday night we even ventured out shopping. It was remarkably not busy and we got some good deals. This weekend we had several holiday parties to go to. Saturday night was a bowling party with Courageous Kidz. They had a blast. One of Chris' friends from camp was there and they were all over the place. Breanna was impressed with all the arts and crafts they had. Sunday morning Courageous Kidz had a breakfast at a hotel with a balloon release. Once again good food, good friends. A chance for the kids to run around and the parents to talk. Sunday afternoon we went to the Camp Happy Days Holiday party. THey had santa, arts and crafts, tons of food and football. Chris played with his same friend from camp and was adorable. I couldn't believe the two of them were playing football. No organized game or anything. Just the running aroudn with the ball. Breanna was either doing arts and crafts or dancing. That child LOVES to dance. She was too busy having fun to eat anything and was hungry when we got home. Then it was busy trying to get everyone washed and fed and calmed down for bed.

I don't think I mentioned Thanksgiving. We had a good time. Family came over and we had the traditional food. The kids were playing and fighting most of the day but in a good way. It reminded me to be thankful that they were both feeling well enough to play and fight. This is a time of year to reflect and all in all I'm very fortunate. Hope you all had a good thanksgiving as well and take time to appreciate your kids fighting. :)

Linda

Monday, November 19, 2007

Chris' ENT appointment was good news/bad news. He doesn't have an ear infection any more. Does have fluid behind the ear drum on the right side. The dr removed some wax with a weird pick thing (Chris was a trooper) so he could see the left side and said that there was fluid on the left side too. Fluid can be normal for up to 2 months after an infection. But the fluid can impact his hearing and it seems that he has another infection either before it clears up or shortly thereafter leaving him with difficulty hearing most of the time. He said for us to come back in 6 weeks and see if it's cleared up and do a hearing test. I asked what we can do to prevent the fluid (I'm concerned about the long-term damage of repeat ear infections) and he said ear tubes, but we'd see what it looks like in 6 weeks. I'm not that hopeful that it's going to change. It seems to be the same story for the last year. I decided to watch his arm some more before I took him in (local oncs said to go to GP) and didn't really notice anything until his soccer game on Saturday. He did great at the game, really running around and chasing after the ball. And it was quite obvious that his arm movements were very asymmetrical I'm not sure how to describe it but it was definitely weird. I've got an apt with the GP this afternoon for the arm and the horrible cough he's developed as well. I don't think this is a GP thing, but I'll play the game and have him refer us to whoever's next. We'll be in NY in a few weeks and I'm going to talk to them about it and hopefully see the neuro dr while we're there. It doesn't seem to bother him, but something's not right

Breanna was doing better until about 2 days off the prednisone when she started the horrible coughing/wheezing again. I want my sweet girl back. She's been quite "spirited" on the steroids. She goes back to the asthma dr this afternoon as well.

I should update again before thanksgiving.

Linda

Tuesday, November 13, 2007

Breanna seems to be on the mend (fingers crossed). She's most of the way through the second (or is it third) dose of prednisone and isn't coughing nearly as much. You can still hear her wheezing after running around, but she's doing much better. She goes back to the asthma Dr next Monday.

Now that she's doing better it's Chris' turn to have a problem. :-( Last wednesday his right ear started draining. Enough to be rather inconvenient and it was a little painful. A trip to the GP and he confirmed an ear infection. The Dr put him on Cipro drops and said that should clear it up. Nope. It continued to drain the rest of the week and weekend. Yesterday I took the kids and we all got our flu shots. Chris went home and fell asleep shortly after we got home (about 5pm) and slept through the night not even waking up for dinner. He does that when he's sick. He is such a deep sleeper that it's near impossible to wake him. I was able to get him to a half-awake state to take his medicine. This morning he wakes up and says both ears still hurt and that he can't hear. Later he mentioned that when he cocks his head to the side he could hear. He has an appointment with the ENT tomorrow that we scheduled months ago to make sure that his ears had cleared up from a previous infections (that was 2 months and 2 infections ago). We wanted to make sure that his ears where clearing all the way up inbetween infections so that his hearing wasnt being further damaged. Obviously that's still an important thing (and I think he needs another hearing test) but I'm not sure now is the best time to do this. His ears are obviously not clear and I'm sure the visit will come with another follow up.

But that's not whats got me the most concerned though. On Saturday at Chris' soccer game I noticed that when he ran he held his left arm stiff. Either hanging down at his side or held close to his chest. He swings the right arm as I would expect of a 'normal' running position. He claims that the arm doesn't hurt. He is able to bend it without complaint and it did appear to have strength in it. But this moring he did the same thing as he walked into the kitchen for breakfast (clutching it to his chest as if it where in a sling). I don't have any clue what all this means, but it sure does seem wierd. I've got emails in to the oncologist but they haven't written back or called... I'm sure it needs to be investigated but by whom I'm not sure. GP, oncology, neuro, ortho, etc?

Linda

Thursday, November 8, 2007 8:29 AM CST

Last weekend was more of the same. Breanna had started to be doing better mid week but took a turn for the worse over the weekend. We managed to stay out of the ER but only just barely. On Monday I took her to the asthma specialist. He put her on an antibiotic for a chest infection, 10 more days of prednisone, continue both nebulizers and wanted a chest Xray for a baseline.

Yesterday Chris' right ear started oozing, a trip to the dr and he's got an ear infection. I've also heard from the NY dr's and Everything is now back and clean. We're working out when he can get back up there for more antibodies.

Linda

Monday, October 29, 2007

We got the results of the CT, MRI and MIBG. All clean. We're still waiting on the bone marrow. As I mentioned before the hama test came back negative. It's a borderline negative so they want to wait and see if it goes down some more. We'll recheck the blood in 2 weeks and if it is still negative will probably head back to NY for a week of 3f8s late November.

We finished with the hospital by midday Wednesday and went out of the city to visit my grandma. She lives about 45 mins out of the city in NJ. She's in the process of moving to San Diego and we were happy to be able to spend the evening with her before we had to go home. Within 20 minutes of being there Chris announces that "You know what would be really good. Apple pie for dessert." And as luck would have it Grandma had all the ingredients needed to make one. Chris helped make one. We had a great visit. We flew home midday Thursday and were home in time for dinner.

Unfortunately Breanna hasn't been doing well. Friday she threw up at school and I had a feeling it was something more. I took her in to the dr and she was in a good enough mood. Chatting away in the waiting room. When the nurse called her name she sprinted past her and ran down the hall to jump on the scale. We waited for the dr to come. She had a cough and I was expecting the tonsilitis wasn't gone yet. She was almost done with the antibiotic but still had a persistent cough that seemed to come shortly before it was time to do the nebulizer again. When the dr came it and listened to her lungs he commented that it sounded very bad. Like a whole orchestra playing in there. She was having an asthma attack. We did a breathing treatment in the office, he put her back on prednisone, we're to increase the frequency of the albuterol and come back on Monday. He said that if she wasn't sounding better on Monday she might need to be put in the hospital!

We tried to spend a quiet weekend at home but it was obvious she was having a lot of trouble. As the albuterol wears off she starts coughing uncontrollably and she has an audible wheeze. Please keep her in your thoughts and prayers that we can get this back under control and she can avoid the hospital.

Thanks,

Linda

Thursday, October 25, 2007 6:34 AM CDT

Scans went well. We fly back today. Results on the CT are back, still waiting on the rest. CT was clean! They scan the chest/abdomen/pelvis with CT. Still waiting on the MRI of head/brain and the MIBG of the whole body. And when I was talking to the Dr she mentioned he is now hama negative... We need to recheck in 2 weeks but if it is still negative he will need more 3f8s....

more later, gotta pack.

Linda

Tuesday, October 23, 2007 5:58 AM CDT

Just a quick update. We're back in NY. Flew up yesterday. Today we've got CT, MIBG injection and MRI. Please keep us in your thoughts and pray for clean scans!

Linda and Chris

Friday, October 19, 2007 6:56 AM CDT

I know I'm late on updating. I've been a little disappointed recently. The great thing about having a network of other families that have children with NB is the support, compassion, understanding, etc. The downside is that you are painfully aware of the horror these families face. WAY too many die. Way too many are left without treatment options and have to make end-of-life decisions for their children. Hospice and children shouldn't be a phrase that you hear. I wish we didn't live in a world where parents had to choose whether they wanted to sign DNR paperwork on a 4 year old. Where you have to explain to a sibling that the medicine didn't work and that the time left is very short. I wish parents never had to make a decision to stop all treatments because nothing is working and time has run out. Life can be so cruel.

Chris and Breanna are doing pretty good. Breanna went back to the dr and has tonsilitis AGAIN. Chris is getting over his infection. Man that boy can sleep when he's sick.

Please say a prayer for all the children that are fighting for their lives this very day.

Linda

Thursday, October 11, 2007

Took Chris to the dr last night for his ear pain. I love it the gp is open late on Weds and Thurs nights (till 8 I think) so if I can schedule the getting sick part in just right I don't have to miss work. Chris went to school yesterday and did pretty good. About 3:30 he falls asleep though and I couldn't wake him up for anything. I wanted to feed him dinner before the dr (6:50 appointment) but he didn't care. I finally got him up about 6:10 and he had no appetite. Still felt pretty miserable and had a fever. We get to the dr and there's one other person in the waiting room. After they call them back Chris gets nervous. Tells me it's no fun going to the dr at night because he's afraid everyone has left and we're there alone. Luckily it wasnt' but a few more minutes before they call us back. The dr comes in and he's got double ear infections and an upper respiratory infection. He gave him an antibiotic and ear drops and we were on our way. After stopping at the pharmacy we were home by 7:45. He tells me that he missed dinner and is hungry. He wants a corndog, and yellow rice and toast and some vegetables and popsicle for dessert and mashed potatoes and on and on. He ended up eating a corndog, popcorn and pineapple juice. Hopefully he'll be feeling better soon. He's got soccer practice tonight and a game on Saturday.

Linda

Wednesday, October 10th 2007

Last Thursday Breanna had her asthma/allergy consultation. They gave me a huge stack of papers to fill out and called us back before I was done with the first page. We waited no more than a few minutes and the Dr walked in. He was quite thorough and went over everything with us. They did the allergy testing on her back and we found out what she's allergic too (dust, cat hair, mold, pollen). And he developed a plan to keep her out of the dr's office so much with some different maintenance drugs (allegra and pulmocort) for the time being. We will see how it goes.

Both kids had soccer games/practices this weekend and Breanna was feeling up to participating! Chris did well and had a good time.

Monday afternoon Chris started complaining that his ear hurts. It was enough to wake him up in the middle of the night in pain so we're going to get in to see the dr today and find out what's going in there. Monday he also had his first bike crash. He fell off and scrapped his knees pretty good.

Thanks for checking on us and for all the prayers!

Linda

Wednesday, October 3, 2007

I updated yesterday too, so if you didnt see it yet click the history link.

New pic of Breanna in the photos page.

Well tomorrow is Breanna's appointment with the allergy/asthma specialists. She seems to be doing alright without the antihistamines but does look a little more ragged than usual. She's complaining about her eyes and ears 'bleeding'. They're not bleeding but her eyes are watering. Chris is still looking a little off too. Probably the combination of too much excitement this weekend, not enough sleep, being in the woods with whatever allergens are out there and the fact that we have scans in a couple weeks and its about right on schedule for me to start stressing out about it all. It doesn't get any easier with each scan in fact it seems to be the opposite. Like because the last couple scans have been great its more likely that this one won't be.... Over the summer at least a half dozen kids that we 'knew' passed away. It really keeps it all in perspective. Please keep us in your thoughts and prayers.

Linda

Tuesday, October 2, 2007

Fall is in the air. We had a great weekend. We went to a family camp for families of children with cancer. It was a BLAST! It was about a hour away and on the lake. They had tons of activities, boating, tubing, parasailing, rock wall climbing, bead making (using the blow torch to melt glass into beads), arts and crafts, kids kickin kitchen, and on and on and on. We went up on Friday afternoon and didnt come home until Sunday. Saturday afternoon they brought in a snow machine and pumped tons of snow into the air. The kids all had a snowball fight. Chris wanted to make a snowman and went to the kitchen to look for a carrot for the nose. They didnt have any but he came back with an orange popsicle and walnuts, so he used those to make the nose, eyes and smile. Very cute. The food was wonderful. They served us things like steamed shrimp, fried chicken, pulled pork, crab stuffed tomatos, etc etc (always with hotdogs on the side for kids that didnt like the other). Of course Chris LOVES shrimp and Breanna does too. They didnt bother with the hotdogs and were too impressed with the other. By the end of the weekend we were all exhausted. Breanna asked me Monday morning when she can go back to camp. Shell be old enough to go next summer and now that Ive seen how much fun she had I think shell fit in just fine. They had a counselor assigned to each family to help out as needed and everyone from the counselors to the other kids would lend a helping hand. Breanna made many friends and had no trouble finding someone to push her on the swings or sit in their laps. Perhaps her best friend was the four legged one. She loved Lollie the dog. And she found that if you share your cupcake with her (after you eat all the icing off of course) and periodically share a cookie, Lollie will be happy to follow you around and shake hands.

Medically speaking Breanna is still having a tough time. Early last week she got sick at daycare and I took her into the dr. Turns out she had tonsillitis. Before I could even bring up that this is just too much sickness for one year the dr brought it up and said he wanted to refer us to an asthma/allergy specialist. Hopefully we can get the full story and find a way to control it so she can feel better. The antibiotics helped and had the side effect of making her hyperactive. She talked and talked and talked all week long barely taking a break to catch her breath.

Chris seems to be doing pretty well. Hes got bruises all over his legs (hopefully just the results of a good weekend of playing hard), he managed to fall off a chair and has a scrape on the top of his head (maybe a little bump too) and he really is worn out from the weekend bags under his eyes and all. We go for scans at the end of the month so its about time for the nerves to start acting up again.

Funny story from this morning.

Chris Mom are you thinking what Im thinking?
Me Sure
C We should get a pet
M Really?
C But not a dog
C or a cat
C Maybe a goldfish
M That sounds good
C Or a parrot
C No. A parrot is too flappy. Theyd flap all over the house.
C Yes we should get a fish

Have a good week everyone!

Linda

Tuesday, September 25, 2007

If you read my entry yesterday you might have thought I forgot to include the cancer facts that I promised all September in honor of Childhood Cancer Awareness Month. Not so. Yesterdays entry was so long I wanted to put it seperate so you can appreciate the facts more. I've copied these off of Ryan's page who took them from Angel Laura's page, it's good information and worth repeating:

The Conquer Childhood Cancer Act is due to be discussed in committee soon. If this bill is signed into law, it would mean 150 million towards pediatric cancer fuuding. It's especially important to contact our representatives NOW. When I last checked 139 representatives had signed on. You can check if your REPRESENTATIVE has signed on here:

http://thomas.loc.gov/cgi-bin/bdquery/z?d110:HR01553:@@@P

You can check to see if your SENATOR is a cosponsor here:

http://www.thomas.gov/cgi-bin/bdquery/z?d110:SN00911:@@@N

For more information about the Conquer Childhood Cancer Act, please visit http://www.curesearch.org. for "ready-to-send" e-mail letters to reps and senators. Old fashioned addresses are available too.

Here are some things to know about pediatric cancer and in particular neuroblastoma:

SOME FACTS ABOUT PEDIATRIC CANCER AND NEUROBLASTOMA:

Childhood cancer is the number one disease killer in children.

Neuroblastoma is the most common cancer in infancy.

Neuroblastoma is the most common extra cranial solid tumor cancer in
children.

Every 16 hours a child with neuroblastoma dies.

There is no known cure for neuroblastoma.

Nearly 70f those children first diagnosed with neuroblastoma, have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2 there is less than a 30hance of survival.

Childhood cancer is the leading cause of death by disease in the US and it
kills more children per year than cystic fibrosis, muscular dystrophy,
asthma and AIDS combined.

There are 15 children diagnosed with cancer for every one child diagnosed
with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for
research per victim of pediatric AIDS and only $20,000 for each victim of
childhood cancer.

Thanks for everyone that has contacted your senators and representatives. If you haven't there is still time. This funding would have a tremendous impact on all children diagnosed with cancer. Thanks for checking on us and if you didn't see yesterdays entry check in the journal.

Linda

ps I didn't forget the new photos. I took some cameras to be developed and should get them this afternoon.....

Monday, September 24, 2007

When last we spoke Chris had just had a appointment in clinic. Counts were looking good. Breanna was recovering from asthmatic bronchitis and September was flying by. Since than more of the same has happened.

Last weekend soccer started. Chris had his first practice last Thursday and game on Saturday. He's playing for the same coach that he did in the spring. He had a blast at Saturday's early morning game. They had a pancake breakfast since it was the season opener and he thought that was GREAT (he LOVES pancakes and waffles). He did pretty good. It's very cute watching the first games. All of the kids are remembering their manners and not wanting to take the ball that another kid is trying to kick across the field. It takes some cheering to get them to be more aggressive. I've got to buy him a new soccer ball. They need a number 3 soccer ball and he's got a number 4 one... Not sure what the difference is but they're supposed to bring a number 3 with them. I wonder if I was told that in the spring and bought the wrong one or if it's changed...

Breanna came with me to his game and behaved very well (a big change from when she would go to his games in the spring) perhaps it was the threat that she wouldn't get to go to her soccer practice if she didn't behave. Did I mention that she's playing soccer this season? They have a 3 year old 'micro soccer' season this fall. For the first 4 weeks they just have practice on saturdays and the next four weeks they play games. They were adorable in their uniforms. By the time Breannas practice rolled around it had turned out to be a very warm afternoon and her allergies were acting up. I was able to convince her to run around the field kicking the ball once and then she was done for the day. I think the combination of the heat and the allergies did her in. Try as I might I couldn't get her back on the field. She was falling asleep standing up. I gave up and took her home for a nap. Most of the rest of Chris games will be after hers in the afternoon so she won't be out in the heat and allergies next time.

Chris is doing good with school. He got into his first 'fight' on the school bus. Turns out he sits in the middle of the bus ("Row J like a fishing hook Mom") with some older boys (3 to a seat) that get on the bus at the next stop. One of the boys seems very nice and has even come over to the house to play with him. The other boy decided it would be funny to come up with things for Chris to say and to laugh at him. Chris didn't want to say them but felt pressured and was upset by it all. Then at some point the kid was slapping Chris in the shoulder and Chris bit him (on the knuckles). It was hard getting the whole story (and I'm sure it's not the whole story - when are you ever going to get the WHOLE story on something like this) because Chris was upset about how the kid was making him feel. But we talked about the appropriate way to behave. How he doesn't have to say something just because another kid tells him to. That if someone is being mean and pushing him out of his seat(apparently that happened the day before) he needs to talk to the driver. I also asked the driver to move him to the front of the bus. Kindergarteners are supposed to sit behind the driver anyway they can keep an eye on them. And just to make sure I covered all the bases I checked with his teacher to see if he was 'aggressive' with the other kids at school. She said she hasn't had any problems with him and that if he has a problem with another kid being mean he'll come tell them. Wow between the whole tattle/don't tattle (he and his sister are very big on telling on EVERYTHING the other does), be more aggressive in soccer, less on the bus, etc, etc, there's a lot of conflicting rules to teach. Thus is life. He's sat at the front of the bus for a week now and I asked him if he still see's the boy in question. He said yes and that this kids is "A little bit good and a little bit mean" I guess like most people.

We've got BIG plans for this weekend and everything picks up going through October with Halloween parties, Octoberfest, Transplant Party, Scans in NY, and Halloween. Not to mention soccer games and practices.

I hear good news on the vaccine. Last I heard it was still a couple months out (and due in September) now it's just a couple weeks out. It'll put us up there to ask in person in about a month. We'll also check the HAMA levels and discuss whether he should get some vaccinations done. We're doing good not stressing out about these upcoming scans but the fact still remains Relapsed NB never goes away for long.

Have a great day. I'm going to try and put up new pics.....

Linda

Friday, September 14, 2007

I've been slacking off again...

Everyone seems to be doing much better. Chris seems fully recovered from his tooth mishap. We went in to see the dentist last Thursday and he still some infection that hadn't resolved yet. We were given another dose of antibiotics. Last Thursday I also took Bree in to see the dr. She'd been pale, and wheezing and pretty pathetic looking. :-( Dr wrote down that she had asthmatic bronchitis and gave her an antibiotic, prednisone and told us to keep doing the nebulizer. She stayed home all weekend (with Grandma when I had errands to run) and by Tuesday she was finally starting to perk up. I don't fully understand this asthma thing. She had been wheezing for a week before I took her in, I had put her on the nebulizer and we were managing pretty well. But when she started with the fever and didn't seem to be improving so well I figured she needed to be seen. On the plus side her ears looked great.

Chris had a clinic appointment on Wednesday and seems to be doing well. All his labs looked great and they found nothing newsworthy to report. We are getting the final details together on our next NY trip. It will be for scans and hopefully we'll be able to find out if the vaccine therapy is FINALLY ready. We'll also test him HAMA to see if he can have another round of 3f8s.

Now for some cancer awareness news.

5 dads of children with neuroblastoma are biking their way cross country (Sacramento to DC) to raise awareness and funds for a new drug trial. The dr's at Sloan Kettering have found a way to make the 3f8 more of a human antibody and less mouse antibody to virtually eliminate the likelyhood of a HAMA - and we all know that if you HAMA you have to stop the treatment until it goes away. This could be a huge impact for a lot of kids. The only major hurdle is funding. The drug companies don't see the return-on-investment in spending money on neuroblastoma research. Their just aren't enough people that would use it (as compared to some of the major adult cancers).

These dads decided they wanted to do something about it. The dr's estimate that they need 2-3 million dollars and they could turn this drug into a trial in less than a year. WOW. The dad's left September 10th from Sacremento and are traveling 3700 miles on their bicycles. If you've got an extra $5 this is your opportunity to see that money go straight into the drug development. And within a short period of time you will be able to see the results. This will not be the CURE for neuroblastoma but it would buy some significant amount of time for children that would otherwise run out of options. And who knows that time that is bought might put them closer to the cure.

Check out the dads at The Loneliest Road Campaign

Linda

Wednesday, September 5, 2007

What a weekend. We started the weekend off with a bang. Friday night Chris woke up crying that his tooth hurt. I would calm him down and he would sleep a few more hours and repeat the process. The thought was that he had a new tooth coming in. I called the on-call dentist Saturday morning and was told to brush and floss (in case something was stuck in it), warm salt water rinse, orajel, and keep an eye on it. It probably was just a new tooth coming in. So we tried that. By afternoon he was running a fever and that side of his mouth was warm to the touch. Another call to the dentist and he agreed to meet us and take a look at it. It was determined to not be a new tooth but an infection. There was swelling on both sides of the gum. Chris was put on a double-dose strength of amoxicillan and we were to call the dr the next morning to report on the progress. Saturday afternoon Chris continued to be very lethargic, taking long naps, laying on the couch and no interest in food or drink. Sunday morning the swelling was not down any, in fact look increased. Now the swelling appeared to be going up his jaw bone. Still minimal activity and no eating. Called the dentist back to give a report and he was more concerned. Dentist called back to say he was able to get his nurse to meet us at the office and would see us in an hour. They tried to drain the abscess with no luck (too much infection) they had to pull his tooth. He handled it like a champ. Hasn't even complained too much. The swelling is going down now and he's finally eating and drinking again.

Breanna seems to be recovering well from the ear tubes surgery on Thursday. She had a lot of wheezing trouble over the weekend but seems to be doing a little better now.

And the fact for the day:

On Average every weekday 46 children in the US are diagnosed with cancer. That's two classrooms full of children 5 days a week 52 weeks of the year with no end in sight.

Linda

Monday, September 3, 2007 8:11 PM CDT

September is Pediatric Cancer Awareness Month. Over the next Month I'm going to try and bring you some facts and figures on pediatric cancer and what you can do to help. I'm going to try and not put too many facts in one post to let the point sink in.

SO today I want to leave you with this little tidbit

CANCER IS THE NUMBER ONE DISEASE KILLER OF CHILDREN IN THE UNITED STATES, IT KILLS MORE CHILDREN PER YEAR THAN CYSTIC FIBROSIS, MUSCULAR DYSTROPHY, ASTHMA AND AIDS COMBINED.

Friday, August 31, 2007 6:21 AM CDT

Chris birthday 'weekend' as it became went great. There was a trip to blockbuster and a 'movie night' with popcorn and chocolate and gummy worms, there was bowling and a steak 'cookout'. There was church and fun time outside. There was a birthday party with all the family and friends. A great way to end the weekend. Spiderman cupcakes and gifts. He had a blast!

I've got rolls of film waiting to be developed so when I do I'll update some photos...

School - We're now two weeks into the school year and things are going pretty well. Their hasn't been anymore issues with forgotten medicine or wrong buses. They had Open House last night and I was able to get more information about the curriculum and his schedule. He seems to be fitting in quite nicely.

Breanna had ear tubes put in yesterday because of her frequent ear infections. She did amazingly. She rode off into the OR in a wagon and didn't cry leaving mommy. When she woke up after the procedure she didn't cry, just demanded that they "Get MY MOMMY". A little bit of discomfort but not bad all in all.

I'll probably update again tomorrow, I've got something important to say and need to finish organizing my thoughts.

Thanks,

Linda

Friday, August 24, 2007 7:43 AM CDT

Today is amazing milestone. Today Chris turns 5 years old. We've got big plans for the weekend and are going to have a blast!

more later

Linda

Wednesday, August 22, 2007

Back to school

Chris couldn't sleep Sunday night with the excitement of school Monday morning. At one point he came into my room and an ad for Advil PM was on the tv - with the line "To help you fall asleep fast". He told me that he needs that. He was able to finally fall asleep and wasn't tooo late. Monday morning he got up and at it with very little poking from me. We packed his lunch and took pictures. I had to drive him to school so I could drop off his medicine. We stopped at the nurses office first. Then we went to his classroom. He was walking along great until about 5 feet in front of the door when he feet turned to lead and he is walking but barely making any progress. We get into the classroom and they are organizing the supplies. Everyone's crayons go into one bucket. Scissors another. Glue another... We find where to put his bookbag and lunch box. Then we head over to the square mat (a rug with many different colored squares, each big enough for 1 child to sit in it). He tells me that it would be okay if I stayed in class today (this is said while gripping my arm in that "I'm not letting go" sort of way). But I'm able to extract my arm and reassure him that he'll have a great time. He rides the bus home that afternoon and tells me when he gets off that he never wants to ride the bus again. "There was a dead ta-ta-toad on the bus". That's pleasant.... But maybe next time we find a dead toad on the bus we can let the bus driver know. I'm sure he can take care of it...

Breanna had a facinating day at preschool monday as well. They changed classes as well (promoted to the next age/stage). She tells me they had a parade on the playground and she got to play the drums. She also says they picked up trash on the side of the road. Why? Because it was dirty. They used sticks to pick up the trash. With pointy ends. And got to wear vests. (I guess so the cars can see them better).... Wow. What a story. I had a hard time believing that the preschool had the 3 years olds performing adopt-a-highway duties on a 4 lane road... But I asked the teacher the next day just to make sure (maybe they were cleaning up the playground?!?) and no, it was a great story but not something that really happened. That girl has a great imagination (and sense of civic responsibility). :)

We've had a few minor problems with school (aside from the dead toad) he didn't get his medicine on Monday. He's supposed to get it at 1pm and there was a little bit of confusion/chaos with the first day of school and he didn't get it. The nurse called me and let me know. She was very apologetic and we were able to give it to him when he got off the bus only an hour and a half late. Tuesday Chris got on the wrong bus. I'm sure it was slightly unnerving for my Dad when the bus goes by in the afternoon and Chris didn't get off. They checked the bus to make sure he wasn't asleep and he wasn't on it. My Dad called the school and it was determined the teacher put him on the wrong bus. He was ok though and they took him back to school and the assistant principal gave him a ride home. Surprisingly with all that excitement he was only 40 minutes late. And he was home before I became aware of the mix up so I didn't have reason to freak out. Now that we've got those mix ups out of the way I feel optimistic that they won't happen again. Maybe different mistakes, but not the same. I also talked to Chris about reminding his teacher that he needs to go to the nurse to get his medicine after lunch and to recognize his bus driver to make sure he knows he's on the right bus. I'm sure after a while it will all settle into routine and he'll recognize the other kids on the bus and when during the day he goes to the nurse...

I wonder what day three of school will bring...

Linda

Tuesday, August 14, 2007

Two updates in one week!

At the top is a camp picture.

We had a great weekend. Chris has learned how to help me with laundry and loves to change the loads. He's not good at folding but he will put it away when I'm done folding it. I'm going to take full advantage of this before he decides it's not fun to do the laundry. :) So he helped me get all the laundry done Friday night (it's not usually done until Sunday afternoon). Saturday Breanna had a dr's appointment, she had been complaining of ear pain and had a slight fever. She's got another double ear infection so they are finally referring her to an ENT. She'll get ear tubes and that should help a lot. In the afternoon we napped and played outside. Sunday they had an arts and crafts drop-off kids activity at church. They had a blast and I was able to rearrange furniture. Afterwards we went swimming and to a cookout. Somewhere in there we also found time to go school supply shopping and make strawberry cupcakes. I love 'normal' summertime activities!

Last night after some more fun swimming and playing outside Chris is getting ready for bed. He comes and asks me "Can I sleep in your bed tonight?" "No sweety" and in an exagerated southern accent "Please. You're breaking my heart". Ahh he's a master manipulator... If it weren't for the fact that the whole time he's saying it he's about to burst into the giggles I might have let in.

Have a good week everyone.

Linda

Friday, August 10, 2007 10:25 AM CDT

Friday, Aug 10th

Another week slips by. Things here are going really well. The final results on all the scans were great. The MRI showed that the skull had healed from the fracture and the pool of blood/fluid has reabsorbed. I have the dr's give me a copy of the final report so I can see what they're not telling me. Of course the overall was that there is new lesions and and no signs of relapse. By getting the reports I am having to learn to read them. THere are quite a few terms that I am unfamiliar with and have to look up. The reports show that his sinus' are still partially blocked. We do have an ENT appointment in a few weeks to discuss the repeated sinus infections he is having. Hopefully we can get him on singulair (some studies have shown it has some nb fighting ability) for allergies. His home oncologists hadn't heard of the singulair studies and didn't even want to be bothered to look up the information on it.... I know it's not likely to be the silver bullet in the fight against nb, but he does need something to help with the sinus', why not singulair over something else.... but I digress. The MIBG lit up in a few places that I hadn't noticed before but the report shows that it's probably psychological uptake - and after a bunch of searching on the internet that seems to mean that it will naturally uptake in those places, but also that if you relapse in those places it is easier to miss because you disregard it for psychological uptake. BUt that if you compare it to CT scans you should be able to tell if it's disease or psychological. We're safe because CT was clear. So I guess the point is that if you're going to look at the radiologists reports, be wary, without a medical degree it might scare you at first, but if there was anything to really worry about on it the dr's would tell you. It's not going to stop me from reading the reports and picking them apart line by line because I find it interesting in a wierd way.

So scans are clean. We go back in 3 months. Chris' HAMA is back so we can't do more 3f8s at this time. So what do we do? We try to be normal and relax and not worry as we wait for the vaccine trial to come available. They seem to be optimistic that it will be out this fall (but they've been almost ready with it for almost 2 years now). We go back for scans in October and we'll check the HAMA than. If it's gone we'll do more 3f8s. If not than hopefully we'll get more info on the vaccine. But barring any complications it means that we are home and all set to enjoy normal things for almost 3 months. THat's the longest we've been home since relapse dec05.

We have been extremely fortunate that Chris has done as well as he has. THe battle is not over but we are in a really great place.

Speaking of great places. This month 2 things happen that I didn't think ever would. On the 20th Chris starts kindergarten, and on the 24th Chris turns 5. This might sound like normal things. Maybe even things that normal moms would feel teary about - the whole "My baby is growing up". But I think I feel it even more so. It's not a 'My baby isn't a baby anymore', it's a 'Thank God my baby is still alive to do these normal things'. So many children with nb don't get to celebrate these milestones.

I Praise the Lord for all gifts he's given us and for bringing us to today. The journey wasn't easy, but it was worth it. We'll leave tomorrow to worry about itself and embrace the present.

Thanks for checking on us. We appreciate all the prayers, well-wishes and thoughts. Please keep all the other children that are fighting this battle in your prayers as well.

Linda

Tuesday, July 31, 2007 6am

Sorry for the delay, we've all been sick since we got home. Last Wednesday Chris did his CT and MIBG injection. Thursday was the MIBG scan and MRI. We also met with the dr Thursday afternoon and got the results from the CT (clean) and tentative from the MIBG scan (nothing noticable). We're waiting for the final report on the MIBG and the MRI but are feeling pretty good at this point. I should hear back this morning. Chris has grown 3cm and gained almost 3 pounds since the last time we were there (in May). The thing that surprised me was that he has really grown up/come out of his shell in the last 3 months. I don't know if it's from being at camp away from mom or just the age, but he's become so much more independent. Some of his friends were there and he had a blast running around and playing

On Wednesday while we are waiting in Nuclear medicine for his MIBG injection (they inject you the day before the scan) he had a blast entertaing the entire room full of people waiting. MSK is a cancer hospital so everyone in the waiting room has or is with someone that has cancer. Most of the room is adults (Chris was the only kid in there at the time) and everyone seems to have that anxiety that comes with scan day. Chris finds a board game (Trouble) but there are no pieces. He decides we can put our fingers in the pegs and we play a game rolling the dice and moving our fingers around the board (trying not to tangle our hands in the process). After we play the game he decides he's going to play with everyone else in the room. He searches the room for his first playmate. Takes the game over and puts it in their lap and explains to them what to do. They roll and move their fingers around the pegs than he does the same. Next he searches out his next playmate (usually on the otherside of the room) and repeats the process. Oh did I mention he got one of those hawaiian necklaces - the layas(I'm not sure how to spell that) - that he puts over the head of whomever he's playing with and then takes it off after there turn. After a couple of trips across the room he's got the full attention of everyone in the room. I'm debating whether I should stop him from interrupting everyone in the room when I realize everyone seems to enjoy the distraction. They seem to be waiting for him to pick them to play a round of the game. They seem to be smiling.

Wednesday, July 25, 2007 5:43 AM CDT

Scans this morning. Prayers requested.

quick one liner from Chris - "If I'm brave today during my scans can we go to ToysRUs?" we'll see. Did I mention this BIG BOY is doing scans without anesthesia!

Gotta run so we can get him to drink the CT contrast in time.....

Linda

Monday, July 23, 2007 11:49 AM CDT

Wishes

We went to church sunday and Chris stops at the water fountain afterwards and asks me for some change. He throws the change in one at a time making his wishes:
"To have a giant pyramid"
"To have a beach at the house"
"To have an island"
"To have my birthday everyday"

I'm not sure what he wants to do with the pyramid, but the rest sound like some pretty good wishes. ;)

We've had a good couple of weeks. We went to a party 2 weekends ago and Chris ate 6 pieces of chicken and 3 hamburgers (not all of them, but most of them). They had water slides and tons of games. Both kids had a blast.

We're doing scans the end of the week so please keep him in your prayers.

Linda

Monday, July 16, 2007 12:13 AM CDT

Food for thought

Chris was one week shy of 20 months old when he was diagnosed with neuroblastoma in April 04. He was 2 weeks shy of 40 months old when he relapsed in Dec 05. He turns 5 (60 months) on August 24th. We should get scan results right around the beginning of August (scans are end of next week) which puts us at the 3 week shy of 60 month mark. Does this make me nervous? Yes. I haven't heard of nb relapses following this kind of pattern but that doesn't change the anxiety that thought brings out. I'm trying not to dwell on it, but several other parents have gotten some bad news lately. You develop a sense of family with the other parents, both the ones you met and the ones that you follow their story online. We share the same fears.

Let's focus on the the wonderful news for a minute. We are almost 19 months out from relapse and Chris is still here. RUnning around. Causing trouble. Fighting with his sister. Playing baseball and soccer. Learning how to rollerskate. Going to summercamp. Looking forward to full day kindergarten in the fall. His scans are currently clear. No disease shows up on them. We're always cautious of the possibility of microscopic disease (b/c the only thing they've been able to prove with relapse nb seems to be that it always comes back) but we feel like we're in a good place. Life has found it's way back to a sense of normalacy and we're having a great time. Maybe that's why these scans are so intimidating. I heard someone else describe it as standing on the edge of a cliff and looking down. You're never sure if you're going to fall in or just look into the deep and step back with a renewed sense of purpose.

linda

Tuesday, July 10, 2007

Summer camp

Last week Chris went to summer camp. This is the real-deal sleep-away kind of camp. I'm still not sure how I survived the week, but he did great. This was put on by Happy Days the local cancer families organization. It's an annual summer camp where the cancer kids and their siblings get to go away for a week and have a blast. They had dr's and nurses on staff to give medication and keep an eye on everyone. I dropped Chris off last Sunday and he immediately found his little girlfriend from the happy days trip we took last month. Chris and Sabrina were inseperable on that trip and were glad to see each other at camp. Turns out they were going to be next door neighbors at camp. Chris had been looking forward to camp for probably two months and all he talk about was going fishing at camp. Well he never did get around to fishing, he was too busy doing EVERYTHING else. Did I mention he went parasailing? Yup, he was the only boy from his cabin to do it. He went up with one of his counselors and was impressed that you can see all of the fish in the lake. He's told me it's kind of like sitting in a swing with a parachute behind you. What else did he do? He went tubing (wasn't impressed when the water got in his face). He climbed the rock wall - ALL the way to the top! He rode a horse. I'm pretty sure he went up in the hot air balloon. They roasted marshmellows. Had fireworks two nights in a row. Cooked. Painted. Built a sand castle. Went to prom. In a limo. With a date. Now he's starting to make up stories about camp. He told me last night at dinner that his prom date was eaten by a large fish when she went scuba diving. I don't think they had scuba diving in the lake. But the rest of the stories from camp his counselor and other campers told me, so I'm fairly certain he did go parasailing. When I first asked him what he did at camp he told me "I told them 'I'm Hungry! I'm Hungry! I'm Hungry' and then I'd say 'I'm thirsty! I'm thirsty! I'm thirsty!'" Yea that sounds like my boy. :)

Like I said he did great. I on the other hand had a hard time not knowing what he was up to. I knew he was taken care of but I couldn't call and talk to him. But despite my initial urge to pick him up early I stuck it out and let him have his fun.

Thanks for checking on us. We have scans coming up so please keep Chris in your prayers. More on that next time....

Linda

Thursday, July 5, 2007 9:38 AM CDT

Last weekend I went to the Childrens Neuroblastoma Cancer Foundation Parents Conference in Chicago. What an experience! This is different from most other dr conferences in that it is actually held for the parents. The dr's are invited to present us with a better understanding of neuroblastoma, the results of recent research, promising new treatments, answer questions, etc. Most other cancer conferences are for the dr's only and they don't invite parents. While that is definitely important for them to have the peer review of what they are researching it is incredible that we have this opportunity to meet with them and have them brief us on what is going on. I don't think they have this for most other cancers. The Childrens Neuroblastoma Cancer Foundation puts this together every year and all the parents really appreciate it.

Some interesting things that I got from the conference:
The results on the trial Chris was put on at diagnosis are in, they answered the question of whehter there was a benefit in purging stemcells before giving them back during transplant. This was for stemcells that didn't appear to have any cancer cells in them. I guess the thought was there might be microscopic. But they showed there wasn't a difference in relapse rate between the kids that got there's purged and those who didn't. The second half of that trial was to see if giving immunotherapy with ch14.18 plus accutane increased survival over just accutane. We didn't participate in that study. It is still years from completion mostly because they are not getting enough patients enrolled on it. The Childrens Oncology Group is moving on with their next trial which will be tandem transplants (you do two back to back stem cell transplants) and changing up the upfront chemo to include cytoxin and topotecan (they usually don't use that until after they relapse).

They talked alot about long term side effects. The worst come from the total body radiation they used to use, Chris didn't get that. There's plenty of other potential long term side effects, but none of that was new information.

Dr Reynolds, a well-known NB dr from California, gave a talk on interpreting clinical trial results. It was very interesting. He spoke on why somethings work in the lab but not in people (in the lab you can literally drop the drugs right on the tumor, also the oxygen is greater....). He mentioned when you want to evaluate a study you want to ask if the new drug was tested on a tumor line (they take tumor cells out of kids and grow them in the lab to test against) that was from a newly diagnosed patient, a relapsed patient, a refractory patient, etc. That most things work with the tumor line from newly diagnosed, but the relapsed cell line has been exposed to some of the chemos before and has changed a little and is less responsive to many of the drugs. Also if a drug was found to work in more than 1 tumor line the better. They have dozens of tumor lines for neuroblastoma. He showed a picture representation of the 'logs of kill' a drug will do. You say that a drug does 1 log of kill if your 1000 cancer cells shrink to 100 after a round of the drug. He says you'd rather have at least 2 logs of kill (which would bring that 1000 down to 10). Of course during a round of chemo you are killing the cancer for the first half and then you have to wait for the patient to recover for a second round and during that time the cancer will recover some too. So that 100 cells will become maybe 300 cells by day 21 of the cycle when you start the next round. The cancer cells will also change a little (I'm not sure if the chemo is changing the cells or if the cancer is changing to avoid the chemo) and I think this might be why they switch up the chemo drugs in between cycles. It was very interesting and I'm probably doing a horrible job repeating the information.

They also discussed some promising new research, nifurtimox and zometa. Chris' dr from MSK was there presenting on their approach to CNS (brain) relapse. It used to be a matter of months to live, and MSK has treated 10 kids in the last 4 years for it and they are ALL alive and free from disease. They use an antibody 8H9 in the brain and I've heard talk that they are looking into seeing if that would be useful for non-brain relapses.

I think that's enough of that for today. I included this becuase I thought some of you might find it interesting as well.

Happy fourth everyone!

Thursday, June 28, 2007 6:21 AM CDT

It's been almost three weeks since my last update... I could say things have been busy, but they're always busy so that's no excuse. I just forgot to update. I'll do better next time. :)

Breanna is sick again. It looks like it's asthma. (Tonya if you can email me those printouts you have it'll be easier for me to read... I forgot them yesterday). Shes' been wheezing bad all week, they've got her on the nebulizer and prednisone and now an antibiotic b/c she's had a fever all week as well.

Chris' head is no longer swollen or spongy. He's had a great time running around now that schools out although I think he misses his friends. He's been swimming with Tonya and is doing really well with it. I can't believe he's almost five.

We've enjoyed some normal things. The kids (aside from Breanna this week) have been feeling well and fighting like 'normal' kids do. They call each other names and poke each other. Occasionally I catch him trying to sit on her or her on him. It's nice to see them developing into a normal sibling relationship. (That doesn't mean I let them get away with it, but I think it's normal to for siblings to irritate each other). Sometimes they're best friends snuggled up on one of their beds to watch a movie, and other times they fight like cats and dogs.

Chris has discovered he can burp and will do it several times with the half giggle and 'excuse me' after each one. And Breanna can roll her eyes at me with the attitude of a teenager.

Thanks for checking on us. I'll have another update sooner this time. promise. Big things planned for July.

Linda

Monday, June 11, 2007

Chris had his follow up on his head. The oncologist reviewed the scan with me and answered some questions. The bone that was fractured is the same one that they had to cut through to get the tumor out 18 months ago. (Wow has it been that long!) The bone wasn't as strong because of the previous surgery. They measured the swelling and did a thorough exam. He appears to be doing fine. They expect it to take a while to heal. They also mentioned that sometimes after all the chemo he's had the bones are not as strong because of it. If he breaks/fractures anything else they will do a bone density test to see how those levels are. Then they sent us to see the neurosurgeon to have them check him out as well. We ended up seeing the same neurosurgeon that performed his surgery in Dec 05. He was impressed to see how well Chris was doing. Said that we should try to make him take it easy but that he remember Chris was very active trying to run around the evening after brain surgery so that might be hard. He said he wanted another ct scan to make sure everything was getting better so we headed down for that. He called us later that evening to tell us that it looked good. The blood clot in his skull was getting smaller. That surprised me because they called it a 'pool of blood' before not a clot and clot sounded a little more severe, but it was after the fact and a good thing that it's getting smaller.... The blood/fluid on the outside of his skull was the same and he expects that to take longer to get better. The fracture was still there and same size.

Breanna's dr appointment went well. She no longer has an infection! They are putting her on Singulair to try and help control the allergies and wheezing. Now if only I can get Chris on it, he had a major sinus infection and was running a fever most of the week. It finally was getting better after 4 days of antibiotics.

We all had a blast this weekend though. Friday after work we went out to a friends beach house. The kids had a blast on the boogie board. Saturday we went shopping, got haircuts (Breanna's is long enough for a ponytail now) and had a cookout. Sunday we went out on Uncle Steve's boat. Chris and Breanna got to fish. They didn't catch anything but Chris did have a blast calling to the fish "Here fishy fishy. I'm going to eat you for dinner. I'll cook you with steak and shrimp and broccoli and hot sauce." Breanna told us she was looking for the pink dolphins. We didn't see any, but maybe next time.....

Monday, June 4, 2007 6:56 AM CDT

June 4th

Last week somehow we managed to see the dr's on monday, wednesday, thursday and saturday. Tuesday Chris had his last t-ball game (saturdays game was the last but it was rained out) and Friday we just had fun. Back to the dr's appointments. Wednesday was Breanna's day. She went for a follow-up on the junk that's been making her feel bad for some time now. I expected it to go pretty well. She seemed much better. WRONG. She's still wheezing, her ear still looks infected and her tonsils are still swollen. We got another antibiotic (I've lost count on how many she's had now) and were told to continue the albuterol. She follows back up the end of this week and will be referred to an ENT if it doesn't clear. Chris... well he fell down last Monday. Hit his head pretty hard on concrete. Had a nice sized lump. So I called the local dr's, my biggest concern was not knowing what his platelets were doing, whether he would have and trouble with internal bleeding. The oncall dr agreed and said we'd better bring him in to the ER for a platelet check. So we went in, and were impressed to find they were 121K (still below normal but reassuringly high). The dr decided we didn't need to do a CT scan because the platelets were high enough. As the week went on Chris seemed to be doing better. No complaints at least. Thursday brought us to clinic for a regular exam and to draw blood for NY. Saturday I noticed that Chris' head was soft. Spongy feeling. The whole right side where he had fallen. The lump was no longer just one egg-size lump but had swollen to cover the whole right side of his head. Of course this brought on another call to the oncall dr and another trip to the ER. They were quick to get us in a room and a dr almost immediately saw him. They ordered the CT. We waited what seemed like hours. This time the head ER dr comes in. They saw something abnormal on the CT. . The dr lets that sink in for a half a minute before going on. He has a small pool of blood inside his skull and a small skull fracture. I can breathe again. I'm not sure how serious a skull fracture is but it's better than the first thing that pops to mind when being told of something abnormal on his CT (they really should learn to speak more clearly so as not give me undue stress). The dr tells me they are going to call the neurologist and see what they think we need to do. When she comes back in 20 mins later the neurologist said they don't need to do anything. If we had noticed the fracture on Monday we would have spent 24 hours in ICU being observed, but because this was a 6 day old fracture we would have had a problem before saturday if there was going to be a problem. They let us go home and are to follow up with the gp this week. Oh and the spongy head thing, it's the bruise/lump resolving itself. It will reabsorb into the skull soon. Same with the pool of blood and the fracture should heal itself.

For some great news - Bone marrows are CLEAN!

Happy Monday all

Linda

Thursday, May 24, 2007 11:58 AM CDT

Things are going pretty good here. Chris is done with school for the summer. He's enjoyed going to the library with Grandpa and going to the movies with Uncle Tommy this week. He's got a few more weeks left in the tball season and then that's done. We got home from NY last Saturday and have been outside most of Sunday and every night this week. The kids got a new sprinkler and kiddie pool and are having a blast. The weathers been so nice. I haven't heard anything on Chris' bonemarrow biopsy results but expect to soon. No news is good news. I'm sure they would call right away with bad news.

Breanna is finally on the mend. She has a follow-up appointment next week to make sure everything is cleared up.

linda

Friday, May 18, 2007 8:45 PM CDT

Treatment went well the rest of the week. Chris had a lot of pain on Wednesday, a good amount on Thursday and a decent amount today. We've come to learn and accept the fact that the pain and hives is an indication that the 3f8s are doing what they are supposed to. Today Chris also had bone marrows and was VERY uncomfortable when he woke up from that. We were able to go right from recovery from the bone marrows to the 3f8s and gave him some pain meds to help with it. He's had a great time playing with the kids here this week. Wednesday we went to the museum of natural history and checked out the exhibits. He loved the dinosaurs but was a little cranky with the late effects of the days treatment. We go home tomorrow. We will mail blood in 2 weeks and see if his hama has come back. One of the nurse practicioners told me that the hama usually comes when you are not getting the antibodies. She said that some of the kids would hama over the weekend when they were doing the antibodies of a 2week period. The benefit of the shorter schedule of antibodies is that we can get the whole 10day dose in 5 days and not risk hama-ing over the weekend. So we'll see. The pain definitely wasn't what we've dealt with in the past. The hives weren't as bad and except for Wednesday his heart rate didn't go as high as it has in past treatments.

Thanks for checking on us. We should hear something on the bone marrows by mid week.

Linda

Tuesday, May 15, 2007 8:47 PM CDT

Today was a great treatment day. Chris sailed through it without pain until the very tail-end. Normally this would concern me that maybe his hama had come back already, but ALL of the kids had the same reaction today. Turns out the 3f8s were warmed up a little more than usual and that caused the less pain. They assure us they are still effective. It meant we were done with the treatment by 11:30, and since Chris only needed a half-rescue dose of pain meds he came out of his funk much faster than normal. We went back to the house and watched a movie then went to the playroom. Chris had a blast with some of the other kids at the Ronald. I literally had to drag him away to get ready for bed at 8. It was good to see all of the kids feeling well. Someone else asked why they don't warm them up all the time if it is as effective and they were told that they'll probably look into that in the future..... Thanks for checking on us.

Linda

Monday, May 14, 2007 9:54 PM CDT

Happy Mothers Day everyone!

We're back in NY. One day of antibodies down. Chris did pretty well today. Still had a good bit of pain (this is a good thing - it means it's working) but it wasn't as bad as it had been before. His heart rate was up to 190 and he got hives that lasted a while. He came down off the meds pretty good though. We got back to the house and he ate a popsicle. Then we went to play in the playroom and for a walk to the candy store. When we got back to the ronald I noticed they had tickets for the Mets game tonight. I asked Chris if he wanted to go and he was up for it. He was a little disappointed that he didn't get to play baseball with them, but he did enjoy it. He tried to buy food from every vendor that walked past him. We left half way through because he was tired but we had a great time.

Saturday, May 5, 2007 8:50 AM CDT

Got a call from NY. Chris is now HAMA negative so he will be able to do more rounds of 3f8s. They're getting him back on the schedule for the next available slot.

Gotta run. busy weekend planned. I'll give more details later.

I'm pretty sure this is a good thing though.

Linda

Friday, April 27, 2007 10:53 AM CDT

Let's see, I last updated after Chris' fever incident. After that night he's been fine. No more fevers and always hungry. He had a cough last night so we'll have to wait and see what becomes of that. Breanna has decided she doesn't want to do dance anymore (no idea why) but I'm not going to force her. I'll wait a while and see if there's something else she wants to do. Chris' t-ball season is in full swing. He's already had 2 games. It's cute how they do it, everyone hits the ball and runs the bases. After everyone has hit they change sides. The kids in the field try to catch the ball and throw it to first base. Chris is one of the smaller kids but he is all over the field to get the ball and make sure it gets to first base.

Last week I was in Dallas for a work conference and something incredible happened. The hotel I was staying in just happened to be hosting the curesearch/Childrens Oncology Group Spring Conference. Here in my hotel were some of the leading researchers in neuroblastoma. I found out that some of the parents in Lunch For Life (see link below) were going to be stopping by on Friday to bring the researchers milkshakes. I got in contact with them and joined them. It was great to meet these infamous individuals that have dedicated their career to neuroblastoma. I think they enjoyed the short break and the chance to meet the people that their research truely benefits. It ended up making the evening news! mms://video.www.edocendo.com/COG042107.wmv

Linda

Wednesday, April 18, 2007 4:37 PM CDT

Things are going ok here. We had a minor scare earlier this week. Chris was sent home from school yesterday with a headache and minor fever. By the time he got into the dr's office his temp spiked to 105! I have never seen it this high. He's got a double ear infection and a throat infection. I think his sinus are also infected, but the same antibiotic should hopefully clear it all out. Poor thing. I guess he did have a headache with a temp that would spike like that. The temp came down by yesterday evening and he was playful again. Today he's been eating like his old 'hungrypants' self. He should be able to go back to school tomorrow. Luckily without the port we're not frightened of a line infection that would require a hospital visit and IV antibiotics.

Thanks for checking on us!

Linda

Monday, April 16, 2007 8:32 PM CDT

Three years ago today the dr's came into Chris' hospital room where we were spending the night after having a whole myriad of scans and a biopsy to tell me that my baby had cancer. You're not sure how to function. It's like the wind has been knocked out of you and you can't form a complete thought. The dr's are there to talk to you about it but really you won't remember a word they say after that. One of the hardest things to do that night was to repeat it to my family that had gone down to the cafeteria to get us something. If I repeated it, it must be true.

It was a very long road to get to where we are now. We couldn't have done it without the countless 'angels' God has sent to us. The kindess of friends that stood by us through it all, of strangers we had never met before strengthened us.

Thank you

Tuesday, April 10, 2007 7:35 PM CDT

Last night I updated with a serious entry, so if you're looking for the serious news check the journal history. Tonight I wanted to put up something a little lighter. While we were in NY last week, Chris tells me his new name is "Spongebob Christopher HungryPants". It was so cute. It really fits because recently he's been a typical boy - always wanting to eat something. He thinks he's quite the funny man. He tries to tell jokes (and he thinks he's quite hilarious) but he doesn't have any punch lines. The other night he tells me "What do you call a chicken on a boat?" You got me. "A ROSTER! AHAHAHA" OK. He told me it three times, so on the third time I laughed along with him (He had a full body chuckle going on).

And now for some great news - MRI and MIBG came back clear! Thanks for al the thoughts and prayers. Please keep them coming as we're not out of the woods yet.

Linda

Monday, April 9, 2007 10:12 PM CDT

Sorry for leaving you all hanging without an update. I didn't get any answers from the drs. Chris CT scan came back CLEAN! We are still waiting on the MRI and MIBG. I should hear back tomorrow on those. I've been trying to make sense of where we are and where we go from here of it all and I'm still a little puzzled. I spoke with the dr last thursday and she didn't have any definite answers. It's frustrating to have so little that is black and white and so much that fits somewhere in the middle. She said "Well.....", the purpose of the trial was to get at least 4, perferably at least 6 rounds of 3f8s in, to continue until a hama was reached. We did get those 6 rounds in. And of course he is still on the protocol so they will check once a month and see if his hama is trending up or down (if it goes down enough he would get more 3f8s). So as far as the protocol goes he looks good. It was a succesful trial for him.

But because relapse neuroblastoma is SOOO very agressive (as if it wasn't the first go round) I feel that we haven't done enough. They treat leukemia kids for 3 years when most of them go into remission in the first 3 months. Why? Because it is so aggressive. Relapse nb is pretty much guaranteed to come back again if you get it into remission a second time. But here we sit not sure what to do. There aren't many trials for nb if you don't have measurable disease. We are waiting on a vaccine trial to become available. Chris will be a great candidate for that. The date on when it becomes available keeps slipping though. So now we wait. I feel bad that I am stressing out over what to do next (and Chris has clean scans) and we've got friends that are nearing their last days. But I've seen kids go from good to gone and it's scary. But at the end of the day there isn't much I can do about it, but be thankful for another day, the opportunity to regain our strength for the next battle (God willing it will never come), and enjoy today for what it is. Please pray that the beast will never come back. Also please say a prayer for some of our friends that are in need Penelope and Kendall . Penelope has got to be the most amazing 4 year old girl ever. She has had such an incredibly tough time and yet she shines with an inner strength that will amaze you. She needs your prayers as she nears the end of her battle. Kendall is also 4. Was diagnosed around the same time as Chris, relapsed a month later than Chris. He's hasn't gotten clear scans since than and needs your prayers as well.

Thank you for checking on us and for all the prayers. I will update when I hear on the MRI/MIBG results.

Linda

Wednesday, April 4, 2007 8:52 PM CDT

April 4th

Good evening from the big apple! Chris, Breanna, Tonya and I made it up Monday evening. We were delayed getting out of Charleston but otherwise had an uneventful flight. Tuesday found us at the hospital bright and early for an MRI and an IV. That afternoon we went sightseeing and enjoyed central park and FAO (it was too crowded in December to enjoy). We got to play on the giant piano. Wednesday we were back at the hospital bright and early for a CT scan. In the afternoon we got the injection for his MIBG scan (scheduled for tomorrow). The NP called me this afternoon. Chris' HAMA test came back positive. HAMA tests his bodies ability to identify the mouse antibody as foreign (stands for human anti-mouse antibody). If the body recognizes the 3f8s are a foreign substance, his body will reject it, and it won't be able to do what we want it to do (kill microscopic cancer cells). Now for some kids this is a good thing. If you have completed at least 4 and preferably 6 rounds of 3f8s if the body develops a hama you have probably killed all the microscopic cancer and the body should be sufficiently trained to fight the monster if it comes back(apparently after the hama the body will *hopefully* develop it's own neuroblastoma antibody). This is were we get into the shades of gray (there always seems to be shades of gray in cancer treatment). Because Chris relapsed we know that his cancer is more aggressive. That is why we continue to treat it for quite a while after we reach clear scans (we know that it is still there and that our diagnostic tools are not enough to find it). Have we treated him with enough 'mouse juice' to kill all of the microscopic cancer cells? Will his body be able to take his hama and learn from it how to recognize the neuroblastoma is foreign and should be attacked as well? What next? I don't know any of these answers. Chris is still on the protocol and they will continue to check and see if the hama goes away (sometimes it does). If that happens than he will continue the 3f8s.

we need answers and it seems all I've got is questions. First things first we need happy thoughts and prayers that these scans are going to be good (it's always scary waiting for scan results). Than we need the wisdom (and the dr's to have the wisdom) to direct us to what next.

Thanks for checking on us. Thanks again for the prayers. I'm hoping to meet with the dr tomorrow and hope to have preliminary results from the MRI and CT and get some questions answered.

Thanks,

Linda

Friday, March 30, 2007 1:04 PM CDT

Friday, march 30

Another busy week flew by. I took Chris to the Dr on Wednesday for a checkup with the oncologist here (they decided they want to see him monthly to see how he's doing). He's been shouting a lot and acting like he doesn't hear what is said to him (constantly asking "WHAT?"). The dr didn't see any wax in his ear though. If it's still a problem when we get back from NY I'll get him an apt with the ear dr to take a look and maybe do a hearing test. I think it's been a year since we've had one of those. I also mentioned my inability to get ahold of the neurologist to discuss Chris' absense seizures. The oncologist was able to get him on the phone and come up with a plan to hopefully help (upping the doses). Afterwards I went to see my dr because I was feeling horrible. I've got another upper respiratory infection. More antibiotics and decongestants. Thursday morning I got a call from clinic that Chris' labs were wacky. They needed us to redo them because his hemoglobin was really high. Everything else looked good though. Of course I did some quick research and found some scary things that can cause a high hemoglobin and was begining to freak out. I took Chris in to get the re-draw, dropped him at school and went back to work. We didn't get the results until 4pm (at which point I'm thoroughly terrified) and everything was OK. Whew... It took me a while to unwind from all that stress.

But today's a good day. My medicine is finally starting to make me feel better. We've got a busy weekend planned with the last soccer game, the flowertown festival, housework, easter planning, and getting ready for the upcoming NY trip.

Have a great weekend everyone!

Linda

Monday, March 26, 2007 6:48 AM CDT

Friday

What a beautiful day today. We're expecting it to be 80 today. Chris seems to be about over his illness - still has a runny nose though. He is very excited about his first sleepover at Tonyas house this weekend. Breanna's going to stay with me and we'll do something special - just the girls. I think I've pinpointed some of Chris' weirdness lately. I think he's having more absence seizures. The dr put him on meds for it last october and told us that this med worked great - almost no side effects but that sometimes it would stop being effective in 3-6 mos. Well I think that's what happening. He was supposed to have a follow up at the 3 mos mark but they had to reschedule it (the dr wasn't in that day) twice and now our 3 mos follow up is scheduled for JULY. How ridiculous is that... SO I paged the dr's assistant yesterday to see what they want us to do, up the dose or change meds and she said that the dr needs to see him. She was trying to get him an apt sooner and is going to call me back and let me know...

OOPs I forgot to post the above update. Now its Monday. The dr's assistant did not call me back on Friday so I'll have to call again. We had a good weekend. The kids are on the mend (now my throat is starting to hurt...) We had a good weekend. Chris had a great time at Tonyas. Breanna and I went and got our hair done and went out to dinner. Saturday Chris had his soccer game and we spent the rest of the weekend running around with errands and house work. I've got Chris' school pics and soccer pics to scan in and will share those when I get a chance.

Linda

Tuesday, March 20, 2007 7:43 PM CDT

Hello everyone.

We're doing good here. I ended up having to take Breanna to the Dr on Saturday - her cough/cogestion was getting worse (she was in 2 weeks ago for the same thing). She was complaining of her ear hurting again. She got more antibiotics and a decongestant/cough med. It occured to me that some of her germies are because she started school/daycare in mid January and has to build up her resistance as it were. Chris had another soccer game on Saturday. He did pretty good but he wasn't 100% yet from his throat infection. It was really cold that morning too. But he did good. He's got 2 more games before the season is over (next 2 saturdays) if anyone wants to come out and watch. What he's really excited about is that t-ball starts the end of April. He's been in the back yard practicing every afternoon. My dad actually pitches the ball to him and he hits the ball maybe 30% of the time (which is awesome - I don't know what the pros can claim but it's impressive to watch).

We go in for scans in less than a month. It's amazing how that simple fact can bring so much fear to the surface. I find myself looking at him and questioning his behavior. The cold and ear infections, the circles under his eyes. Is he pale? Could just be the throat infections, maybe a virus Breanna picked up? He seems more tired than usual (again could be his infection or a virus). He was complaining the other night that his bone marrow site hurt. They haven't done a bone marrow biopsy in a month. It shouldn't still be sensitive (it got bumped while he was being tickled). He's never complained of pain there before. Are the upcoming scans what is precipitating my anxiety or are they the relief to my anxiety? I'm glad that we're getting a full set of scans done in April.

At least that will answer any questions. I haven't seen Chris be this 'off' since last October when we diagnosed the absence seizures. Maybe they need to change his dosage.... Maybe it's just normal kids stuff...

Thanks for checking on us and please keep him in your prayers.

Linda

Wednesday, March 14, 2007 9:19 PM CDT

This is another late update. Things are going pretty good. Chris had to go to the dr today. He's got pharyngitis. Hopefully the meds will help him feel better. Between the three of us it seems like I've been in that dr's office a lot this year. I think we've had about 9 trips. Hopefully we can finally be done with this junk.

Chris' soccer season is about halfway through. He was having a lot of trouble keeping up with the other kids at practice yesterday but that makes sense now with being sick.

School is going well. Did I mention he started speech therapy? He's getting some help with his articulation. He can't make some of the letter sounds - and while he talks a lot, some people have trouble understanding him when he talks fast. He's doing great learning all his letters. Even today at the pharmacist he was pointing out the letters in the words on the sign.

Breanna's still enjoying dance class. They are starting to prepare for a spring recital in may. She has a crush on one of the boys on Chris' soccer team. Joey was distracted talking to Breanna and twice told the coach he wasn't ready to go back in yet. :) I decided to take Breanna for a walk away from the bench so Joey could concentrate. I doesn't help that Breanna cheers for him from the sidelines "Joey! Joey! Come here!" Too cute.

Hope you're all doing well. Please keep us in your prayers - that Chris'll get over this junk that's going around and that it's just typical junkiness and nothing more (did I mention Chris has scans in less than a month?)

Linda

Thursday, March 8, 2007 10:04 PM CST

I haven't updated in a while because I wanted to leave that info up on the budget cuts and childhood cancer research. So if you haven't read it or written your representatives go to the journal history and check it out. Our kids need you!

OK this will be short, but I'll post more tomorrow. The kids are doing good. Chris has recovered well from the last trip to NY (mid Feb). He started playing soccer in a 4 year old league. They are adorable! He's doing good in school. Really enjoys going. Breanna is doing good too. She had to go back to the dr for another ear infection. She's loving school too. No more struggles in the morning.

I've got some pics to post when I get a few minutes....

Linda

Monday, February 26, 2007 7:55 PM CST

Warning - this might be long.

I'll update later with how everyone is doing. Today I want to write about something else, something much more important.

I want you to imagine that within a 2-week time your life can go from normal to hell and never be the same. Your child that looks fine today in that amount of time (or less) can go from having no symptoms to needing an emergency trip to the dr's or hospital where they will tell you that your child has cancer. Every single day this becomes reality for 46 families in the US (Over 12000 annually). And while some statistics will tell you that great strides are being made in cure rates for the children - CANCER IS STILL THE NUMBER ONE DISEASE CAUSING DEATH IN CHILDREN. In 80% of the cases the cancer has spread before it is detected. As adults we are told what we can do to reduce our risks of getting cancer - watch our diet, don't smoke, don't drink to excess, etc. You C-A-N-N-O-T D-O A-N-Y-T-H-I-N-G to protect your children from this. It's a nightmare you don't want to think about happening to you and one you'd rather face yourself than have to watch your baby face. I don't know the figures for other cancers, but for Neuroblastoma (the number one solid tumor in children) stage IV (remember 80% of cases have spread by the time it is diagnosed) the figure is about 35%. If your child makes it through initial treatment you find yourself holding your breath waiting to see if you will be one of the lucky 1/3. When your don't land in that lucky (even the lucky third will face mild to severe long term side effects the worst being a secondary cancer) 1/3 you are told that Relapsed nueroblastoma is ALWAYS fatal. You watch your child playing without a care in the clinic playroom trying to take that in. How can that be? You grasp for hope.... God is the one with the plan. But you cant dictate that plan. You hope that a cure is found in time for your child (and all the other children that are in the same boat that youve fallen in love with in the meantime). We just need to buy enough time for the scientist to find that one piece of information were missing the cure. Sounds easy right? If you're that scientist you know that it's hard to get the funding to research childhood cancer. Much more money in adults - there's more cases. That explains why most of the treatments our kids get wasn't developed for them, but was found to work in adults and transferred to them (better than nothing right?) So here you are, your child has relapsed. While waiting for this treatment you try the most promising. You hope that your childs body can survive the harsh effects of the treatments and that there will always be one more thing to try. That's not always (unfortunately it not usually) the case. And it's not for a lack of new developments. But it takes money to take a promising idea from lab to hospital bed. And childhood cancer research has been notoriously under funded for quite some time.

(Quick example - Childhood cancer kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined. There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS and yet the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.)

Maybe knowing all of this will outrage you when you hear that funding will be cut even more for childhood cancer research. "In recent years, the amount of funding for childhood cancer clinical research from the federal government has been declining. In response to the most recent cutbacks, the National Cancer Institute has decreased funding which especially impacts childhood cancer research. As a result, the Childrens Oncology Group (COG), the worlds pre-eminent childhood cancer research organization, has been forced to put 20 new studies on hold and decrease enrollment in new clinical trials by more than 400 children next year. " - www.curesearch.org

Obviously this is something I feel very personally about. Chris is one of those relapsed kids. In the 3 years he's been fighting this the number of kids that we've met that haven't made it would break your heart. I can hope and pray that a cure comes in time for Chris, but this is bigger than just us. This is all the children that will be diagnosed tomorrow and the day after that and the day after that and every single day until we finally figure out how to stop this nightmare. It doesn't have to be this way. But if we don't make our voices heard our representatives in Washington will think that we're ok with them putting childhood cancer research on the bottom of their priority list. I understand that there's only so much money and cuts have to be made somewhere but I dont feel we should forfeit the lives of out children in the process.

You are reading this page because you know Christopher. You've come to love him. If I can't convince you to fight for him, then we'll never be able to convince those in Washington. If you want to know how to make your views heard go to www.curesearch.org and click the link on the left about budget cuts. You can put in your zip code and it will allow you to put in your contact info and send an email to your representatives. I promise it's easy to do. They've even got preset messages (and you can personalize if you want).

Thanks for reading this and thanks again if you contact your representatives.

Linda and Chris.

Tuesday, February 20, 2007 10:33 PM CST

Made it home from NY. It's interesting flying over all these frozen rivers and lakes. We lucked out with the presidents day holiday on monday and had an extra day to relax before going back to work/school. Chris was very excited today after school, he got all the valentines from the other kids. Then we had to go to soccer practice. The second half of the practice they scrimaged against themselves. He told me it wasn't nice when the other kids try to take the ball from each other.

oh we had a great discussion last night. he told me he was afraid the aliens were going to come and eat him. He was really afraid. I wasn't sure how to deal with that so I told him aliens only eat chicken nuggets and he doesn't taste like a chicken nugget. He was afraid they would get lost looking for mcdonalds and come here anyways. We talked about how they were nice and the astronauts take them the chicken nuggets from mcd's so that they don't have to try and get the spaceship through the drivethru line. sure i could have just told him theres no such thing as aliens, but I didn't think he'd believe me. :)

Friday, February 16, 2007 6:51 AM CST

It's Friday!

Chris has done alright this week. Same temporary side effects. Yesterday his heart rate jumped to 220 but only for a brief minute. It dropped back to 200 and then 30 mins later was back at 170. The snow fell all day Wednesday. For a southerner it's unreal to have to deal with the mess it leaves behind. Today the snow has all turned to ice and it just gets in your way when you try to cross the street. They've shoveled the sidewalks and plowed the streets, but left it all in that first couple of feet off the sidewalk. We're at the hospital all ready today for his bone marrows.

Linda

Wednesday, February 14, 2007 7:27 AM CST

Happy Valentines Day!

We're halfway through another round of 3F8s. Things are going pretty good. Monday was a strange treatment day. As soon as they gave Chris the diludid he started acting very aggressive. He was trying to bite me and throw things at me. I was finally able to talk him through some deep breaths and then he calmed down. When the pain came it was strange too. I was holding him and his eyes were rolling back into his head - really freaky. Then the hives came and his heart rate stayed at about 200 for almost 2 hours. He complained of a headache in the evening and went to bed early. Tuesday we didn't have to be at the hospital until 11, so we slept in and hung out all morning. Tuesday he didn't have any of the rage and the pain seemed better, his heart rate was only in the 170s. He complained of his throat hurting which is usually associated with the hives closing up his throat, but a little benadryl and he was better. Today we woke up and it's SNOWING! We don't have to be to the hospital until 11, so we'll go out and have a valentines day breakfast and make our way over there.

Thanks for checking on us.

Linda

Thursday, February 8, 2007

We're still hanging in there. I'm finally feeling better. Chris still has a cough but seems much better too. Now Breanna (the only one in the family not to be put on antibiotics) is looking bad. She's had a fever for the past 2 days, sore throat, cough, nausea and all that good stuff. She's got an appointment this afternoon to see if we can get to the bottom of it. She did much better at preschool monday and tuesday (she was sent home weds with a fever). She seemed to really enjoy herself.

Chris started soccer practice on Tuesday. His team is called the Field Mice. He had a great time but was disappointed that he didn't get a trophy at his first practice. :) What a character.

Hope you're all avoiding this nasty bug that's going around and have a great weekend!

Linda

Thursday, February 1, 2007 8:51 AM CST

What a week! Monday I took Chris to the dr for his cough - double ear infection and throat infection. My mom also went in - sinus infection and ear infection. Tuesday I went back in - bronchitis. My brother went in - pneumonia. They sufficiently medicated us up and sent us on our way. Yesterday Chris through a 'surprise' birthday party for me. Even called the rest of the family and invited them over for cake (he picked it out at the store with my mom). He tells them all "Bring presents". I'm in the room with him while he's doing this (feeling pretty sick) and tell him not to tell them that, but he pretends not to hear me. I think me meant for them to bring HIM presents. :) Good sports that my family is they all came over - risking possible infection by being near the rest of us. It was nice. We're still all feeling pretty bad. I've been sick a week now and hope that it is almost over. I'm debating whether Chris is any better or not. His antibiotic has torn up his stomach. Breanna has the sniffles but is making out all right. She started preschool on Monday and isn't too sure about it yet. It's a full day program and she'd rather be at home with poppa. She does have fun, but she misses us and isn't sure about the structured environment. Hopefully it will sort out in a couple of days.

Sunday, January 28, 2007 7:51 PM CST

Chriso

They are trying to teach Chris how to write his name in school. Of course they are going with Chris instead of Christopher for obvious reasons. Well he knows that there is an O in his name and refuses to abbreviate it without that O. O is his favorite letter because it looks like a circle. He said the cutest thing today. He was riding his bicycle in the driveway and swerved to avoid hitting something and tipped it over and fell off. He wasn't hurt though. He says "OK. That was not fun." In all seriousness. He cracks me up sometimes.

We're doing pretty good. Breanna was sick last week and gave it to me and a day later Chris and my mom got it. It's chest congestion, sinus's, cough, etc. Breanna's starting to get over it finally.

Thanks for checking on us.

Linda

Wednesday, January 24, 2007 5:01 AM CST

I love how kids can take joy in the little things(we could learn a lesson or two). Last night I told the kids we were going to have a 'pajama party' after dinner. We got our jammies on and took care of all the bedtime medicines, threw a bunch of pillows and quilts on the living room floor and watched a movie. Or course there had to be some popcorn too. They seemed to enjoy themselves.

happy wednesday....

Friday, January 19, 2007

Good Morning,

Things are going good here. The kids are happy and healthy and full of mischief. I'm hoping to sign Chris up for soccer to start after we get back from NY next month. It's a short season (only like a month long) so he won't really miss any of it for trips to NY. He's got the wierdest tastes these days. I know all kids can be like this sometimes, but he really goes to the extreme. Some nights he will only eat his vegetables for dinner nothing else, other nights just the meat, other times just bread and butter, etc. What he loves tonight and takes 3 servings of he will not touch again for weeks, complaining he doesn't like it. We try to coax him into eating a little more here and there. He's not losing weight, but I'd like him to gain some more. Last night I was helping him with recognizing his alphabet letters and trying to get him to trace them. He was so cute, before he tried he says "Here goes nothing..." Where they come up with some things I don't know.

Breanna is doing great as well. She has been very intent on not sharing her birthday presents with anyone.

Have a good weekend everyone!

Tuesday, January 16, 2007

Tuesday Jan 16th

Scans are Good!!! It's always a relief to get the final results. Chris starts his 6th and final round of accutane next Monday. He will continue with the antibodies 1 week every other month until he hama's(recognizes the antibodies are foreign) or July 08. We hope to get as much of the 'mouse medicine' in him before hama as possible. He started back to school and is doing great. I haven't had any more calls from the nurse with him complaining of anything. He's excited to go every morning and told me the other day they went to the library. Breanna is doing good she started dance class back up after the holiday. She had her 3 year old checkup and is doing great. We had her birthday party on Sunday and it was great. The weather was in the 70s and beautiful.

Linda

Thursday, January 4, 2007

2006 saw many things for us

9 trips back and forth to NY
5 rounds of chemo
1 whole month of radiation
5 rounds of antibodies
2 attempts at stem cell collection (1 successful)
4 surgeries

We started the year still in a scary place. Chris relapsed Dec 05, had just had brain surgery (it was in the skull, under the brain, not in it though) and we knew that they were not able to remove 100f the tumor. We had yet to find a treatment path to take and weren't sure how optimistic we should be. After we contacted some other hospitals we felt better, we came up with a plan and we found hope. We faced the challenges as they came, one day at a time and we got back into the routine. We are no longer devasted that Chris relapsed (it was horrible), but we are over that now. We can't dwell on it. Life must go on. I have been reminded not to take things for granted. You can make the most menial chore an adventure if you try. Somewhere along the way we found hope again. I've met some truely wonderful people and am continually amazed at the kindness people have shown us. I couldn't possibly express my gratitude enough. Thank you for the strength you give me.

Somehow along the way we managed. I am amazed and not quite sure how we did manage but we did. My mom and dad took care of Breanna while I was in NY with Chris. I was able to 'schedule' chemo for over the weekend most times to reduce the number of days I needed to miss work. I was able to juggle and get someone to watch Breanna and my dad would watch Chris at the hospital so I could go to work. I've spent more nights in the hospital than I can count. But we've managed. Despite it all Chris is still a sweet, caring little boy. He was able to start 4K in November and despite visiting the nurse at school a lot, seems to do well. Breanna has had to deal with a lot more than I wish she had to as well, but she is amazing. She is so independent and headstrong. She's a born problem solver. ("You're not going to get me another cookie, well than I'll get it myself - close your eyes mommy").

Linda

ps still no word yet on CT and MIBG results....

Monday, January 1, 2007 10:07 PM CST

Happy New Year!

I finally have a few minutes to put a real update on here. I was expecting that December would be a busy month but

I still wasn't prepared for how busy it was. I think I mentioned before that Chris had scans that he needed done

in December and he needed another round of 3f8 antibodies. The scheduled changed so many times it was starting to

get funny. First he was 'due' for 3f8s the week of the 25th. I asked ahead of time if they would still do that

with Monday the 25th being a holiday and they said yes. We scheduled scans for the end of the week before and were

going to spend the weekend at my Grandmothers in NJ and then finish the treatment Christmas week. Then they called and decided with the new 1 week antibody they didn't want us to miss a day (with 2 weeks of treatment is wasn't as much of a big deal...) SO they were going to schedule us for the week of the 18th. Then because of the weird MRI that then needed to follow up on from the end of Oct they bumped the 3f8s up to the week of the 11th. Scans flip-flopped several times too. Then we think we finally have it all scheduled I get a call from the school nurse and told that Chris was exposed to Chickenpox on the school bus. YIKES. Chickenpox can be very bad for someone with a
weakened immune system. Plus the fact that it's highly contagious and they won't let you come to the oncology wing/clinic at the hospital. This was 1 week before we were scheduled to be in NY. I thought for sure they were going to have to shift everything around again. But they came up with a plan that worked all right. Because of his exposure on that Monday he wasn't going to be possibly (we weren't even sure that he was definitely exposed) contagious until the following Wed.

So we got to go to NY and start his 3f8s on the 11th. The evening of the 12th they admitted him to an adult floor of the hospital were he wouldn't possibly expose other kids and he would still be able to receive his treatment. Wednesday night he spiked a fever. They didn't start him on antibiotics because they thought it might just be a
reaction to the 3f8s or the chicken pox coming on. Thursday he had his MRI. By thursday his blood cultures were growing something so they started him on an antibiotic. He was starting to get cranky by this point, cooped up in his room and just general going through treatment moodiness. We were supposed to be discharged on Friday to go to
my grandmas house (couldn't go back to the Ronald and expose those kids) for the night before flying out the next morning, but his cultures were still growing of Friday so they decided to keep us another night and discharge us Saturday morning after his morning dose of antibiotics so we could catch our flight and check in with the hospital here to get his evening dose of antibiotics. We make our flight and get home around 3:30. Call the dr's here and are told to wait until we get a call from bed management to know that they have a room cleaned for us. So we go home, visit with Breanna for about an hour, get the call and head out to the hospital here. We have to go to another non-oncology wing (still under chicken pox watch). The nurses weren't our 'usual' ones because of the different wing so it wasn't as nice. They were pleasant enough but it wasn't the people that we've grown to love over the years. And the oncology drs weren't on the same unit as us for me to be able to get there attention as they walked by. It seemed to take forever to get anything done that night. They didn't even start his antibiotics until 7am the next morning. By Sat night it was determined that the infection he had was a nasty one and that he would need his port removed ASAP. Some kind of antibiotic resistant staph infection. They worked him into the surgery rotation for Sunday and removed at about 2:30 (right about the time that Breanna was going on stage for her dance recital). :( It was video taped and she had tons of supporters there to cheer her on. From what I'm told
(I'm still waiting for the video) she was adorable - especially when she lifted up her dress to wipe her runny nose with it!

Chris stayed in the hospital through Tuesday night. We spent all day Weds and Thurday unpacking and repacking for our 2nd trip to NY and left on Friday, Chris, Breanna, me and my mom. It is something else to fly commercial with 2 children. Getting through security is a challenge with all the stuff we needed - 2 carseats, a stroller, a lunch
box cooler with medication, the kids backpacks, my backpack, my mom's backpack, laptop, portable dvd (worked like a charm to keep them quiet on the flight), the bags of medication (didn't want to put in checked luggage in case it got delayed in arriving. Not to mention taking everyones shoes, coats and belts off and walking through the scanner
one at a time. And then repacking everything. :) Yeah we were that group that hung up the security line. But it all worked out - we were exhausted by it but it went pretty well.

We did a big Christmas eve celebration at my Grandmothers. There were 4 generations present and it was wonderful to have most of the family in the same room. Tuesday me and the kids went into the city where we were met up with by our good friend Tonya. Wednesday Chris had his CT scan without anesthesia. He was so good and laid perfectly still. There was a problem with the shipment of the MIBG injection so we had to change plans again. He was supposed to be injected on Weds and scanned Thursday, but instead they had to reschedule for a Friday injection and an Saturday scan. It totally messed up our flights home, but what can you do right? We took advantage of a day without having to go to the hospital on Wednesday and went sightseeing. Breanna got to see central park, fao swartz, times square, the staten island ferry. That evening the Yonkers FD took a group of people from the Ronald ice skating at central park. The kids had a blast. They had it set up so nice for us. They took us over in a van, got us the best parking spots there, We got to cut to the front of the line and they had a huge heated tent set up on the side for us to relax in when we needed a break from skating. Breanna could have stayed there all night.

Chris had his injection on Friday and we went to see the Christmas tree at Rockefeller that evening. It was soo crowded. On our way home we ran into Dora, Spongebob and Elmo taking pictures with the kids. Breanna has been very big on Dora recently and Chris loves Spongebob so they thought that was cool. Saturday Chris had his scan and to my untrained eye everthing looked pretty good. I was amazed at how well he did for all of his scans. The MRI came back normal - PRAISE THE LORD! We should hear on the rest of them sometime later this week.

We were lucky enough to be able to change our flights for only a small fee and We got home very late Saturday night. Sunday we exchanged gifts with the rest of the in-town family and today we got to relax a little. I am amazed at all that happened in 2006 and so very grateful for everyone that has been there for us, lending a hand or saying a prayer. This time last year we were terrified and not if we would have any more of these holidays together. We still can't let our guard down, but we are doing so much better. Thank you for being there with us through these tough times.

Linda, Chris and Breanna

Monday, December 25, 2006 10:19 AM CST

Merry Christmas everyone!

We are spending the holidays with my Grandmother in NJ. Chris, Breanna, my mom and myself flew up on Friday. They had a big family dinner last night with all the aunts and uncles and cousins coming over. It was a lot of fun. The kids had a blast. There were 9 kids in all and Chris and Breanna loved having playmates to get in trouble with.

Chris is doing very well. He hasn't complained about his port hurting him at all. He started his 5th cycle of accutane today. Only 1 more cycle after this and then we're done with it.

Hope everyone is enjoying the holidays and spending time with family.

Linda

Tuesday, December 19, 2006 8:23 AM CST

Chriss surgery on Sunday went very well. He didnt even seem to be in hardly any pain (were still weaning him off the morphene so that may have helped). About 10 mins after he woke up he tells me That didnt even hurt. Im not so sure I believe him. But he is managing very well. His appetite seems to be back and he was in good spirits yesterday. We are hoping to be out of the hospital today.

Ill update more later Busy busy busy

Sunday, December 17, 2006 7:33 AM CST

what day is it again?

I tried to buy a paper this morning and couldn't undersand why the paper machine wouldn't open up. It took my money. I tried 3 seperate machines with the same results. Then I realized today is Sunday, I needed to put more money in to get a sunday paper.

We got discharged from the hospital in NY in time to make our flight home. Had to check back in to the hospital here as soon as we got here. The dr's in NY have had long enough to stare at the blood culture they did from Weds to determine that we are not dealing with the infection we thought at first. This is a much uglier infection and they recommend removing his port immediately. We are on standby for surgery as soon as they can fit us in. This should be a fairly routine (ha) surgery. It will be more 'tedious' because he's got some scar tissue around the port after having it for 2 years.

Please keep him in your prayers. I'll update later today.

Linda

Thursday, December 14, 2006 8:23 PM CST

We are in the hospital still. Chris spiked a fever last night, 102. They drew blood cultures and it came back today for gram positive something or other. The dr called it a typical line infection that responds well to vancamyacin. So that's good news. We are hoping that it will not effect our ability to leave tomorrow but aren't too sure yet. The dr said not to cancel our flights for Saturday. We've got to be home by Sunday to make it to Breanna's dance recital. I really really don't want to miss this. This is Breanna's chance to be in the spot-light and I really want to be there for it. sigh. If you don't mind keep a happy thought, or say a prayer that we get out of here in time to make our flight. Chris seems to be doing all right. He had his MRI today without anesthesia. They only had to stop it once or twice to tell him to stop sniffling. While he was doing a great job of not moving the sniffly-not-quite-crying was making his face shake just a little. But he did great and they were able to do it. His a little grumpy/tired but that could just be from the 3f8s. Thanks for checking on us.

Linda

Wednesday, December 13, 2006 7:16 PM CST

Things are going well. Chris is half-way through this round of 3f8s. He went in-patient last night. He's on isolation b/c of the chicken pox exposure. He's not thrilled about not being able to leave the room, but it'll be ok. So far we've seen more of the same for the 3f8's. Pain, hives, high heart rate. But because it is the 'normal' stuff it's not too bad. Sometime tomorrow we are supposed to go up for the MRI follow-up. This will be his first MRI without anesthesia, so keep a happy thought for us. I'm not sure how long it will take to get results.

Linda

Thursday, December 7, 2006

It seems like the world is going in fast forward recently. It seems that we have at least the first part of December planned finally. I say finally but it was planned than changed, than back to original plan, than changed, etc. Whats this non-sense Im talking about? We need to fit Chris MRI follow-up (remember the somewhat changed bone marrow signal on the MRI from late October?), his normal quarterly scans, CT, MIBG, and his 3f8 treatment into December. He was originally scheduled for 3f8s the week of Christmas, but then they changed that because of the shortened week. Then we thought Chris was exposed to shingles (it wouldnt cause him to get shingles, but chickenpox) but then it turned out to be a false alarm. And now that the shingles scare is over I got a call from the school nurse on Tuesday that Chris was exposed to chickenpox on the bus Monday. URGH. Later conversations with the teacher and it is not definitely chickenpox, but the other childs doctor can not rule on chickenpox The NY team discussed it and Chris can still get the 3f8s next week, he will just have to go in-patient on Wednesday (on an adult floor) so that he wont expose anyone else. Its not even guaranteed that he will get the chickenpox, but if he was going to, he would likely get them between day 10 (from exposure) and 21. So he doesnt have to be on isolation until day 10. A lot of stress but it seems that it will work out ok. Wed prefer not to be inpatient on isolation, but at least he can still get the treatment.

He seems to be doing pretty good. Hes finishing up week 2 of the 4th cycle of accutane (he does 2 weeks on/2weeks off for 6 cycles). His face is drier than usual. I think its the cool/dry air. His lips are so dry that they are cracking and bleeding. Were trying to keep him slathered in lotion but its hard because the lotion burns his skin when we put it on. Hes also been to the school nurse twice this week complaining of a headache. Hes only in school for 2 hours a day and doesnt seem to complain at home. Last night I was late getting home from work and he was on the couch asleep already at 6. When I tried to wake him up for dinner he didnt want any so I let him rest. I did have to wake him up for his medicine before bed though. He was very grumpy/sleepy/disoriented. After taking his medicine we went to the bathroom to brush his teeth and wash his hands and he was complaining that the back of his knees hurt. He seemed to be in a lot of pain. (Im going to blame that on the accutane because I dont want to think about it being anything else.) So I gave him some Tylenol and let him lay down in my bed. I tucked Breanna in and went in to check on Chris. He had woken up and was in an adorable mood. It was the complete opposite of what he was five minutes before. He has this infectious grin on his face and tells me Im hunnGRY. Well yeah. He did skip dinner. So I ask him what he wants to eat. That infectious grin is now on my face. With mischief in his eyes he tells me Ice cream. What kind? I ask. Cookies and Cream. Okay but if I take you to the dining room to eat it, Breanna will come out of her bed and think its playtime again. Youll have to eat it in here and keep quite so Breanna doesnt hear. Then when I get the ice cream its almost gone so I just let him eat out of the container. While hes eating the ice cream he is talking non-stop and jumping from subject to subject. I asked him how his day was. You know what I did at school today? I pooped in the potty (constipation is still a problem for him) Ms Kuhn said Yea Did you leave the door open? No I was in there all by myself. Ms Kuhn doesnt wipe my butt. She wipe her own butt. You dont wipe other peoples butts. Im a big boy. Thats enough talking about poop. What should we talk about now Oh I know New York. Lets talk about new york. He continued to ramble from one subject to another changing the topic when he had said enough, just in a completely happy mood. We talked about everything from poop to new york, to his nurses and drs up there to flying to How was your day Mom I told him I was stuck in 2 very long meetings You shouldnt go to meetings if they give you a headache. When he had finished off the ice cream and had run out of things to talk about he announced he was ready to watch some tv. Theres not many cartoons on at 9pm so I put a movie in. He finally fell asleep about 10. It was such an interesting conversation.

Linda

Tuesday, November 28, 2006

Things are going pretty good. We had a great Thanksgiving. Lots of food and family. The kids were very excited and couldnt wait for dinnertime. We watched the Macys parade on the TV and Chris did a Grinch impression (trying to steal all the toys) and Breanna tried to imitate the Rockettes. It was very cute, she almost fell over trying to lift her leg as high as she could. On Saturday we went to the Happy Days (a local childhood cancer support group) Holiday Party. They had arts and crafts and food and SANTA. Chris was disappointed that Santa didnt bring his reindeer. But they had a great time. The news was there and I noticed Monday morning they showed the kids for the briefest second during the clip.

Monday morning came all too soon and it was back to work and school. Chris seems to be enjoying himself at school. He did tell me that he keeps trying to tell his teacher about going to New York but that she doesnt listen. :) I can understand that. At times he talks about it non-stop. Its funny how we can have selective memory about some things. We (he and I both) seem to block out the painful parts about going to NY and the treatments. Oh that reminds me, back in early summer we went to a Rally Across America event, Im pretty sure I mentioned this then, but forgot to mention that they were doing a documentary on it (2 college grads road their bikes 5000 miles to raise money for childhood cancer) and Chris is in the documentary trailer. You can check out the trailer at http://www.veritazproductions.com/002.html. Chris is at the end holding the red balloon. At one point the lady asked him if he has to go to the hospital to get chemo and he shrugs his shoulders and says Of course.

Thanks for checking on us and have a great week.

Linda

Monday, November 20, 2006 11:53 AM CST

Everything is going good. I want to share some cute stories

The first day of school I drove Chris. In the car on the way I am questioning him on how hes supposed to behave. He holds a running commentary going over the things Ive reminded him of Dont hit the other kids, check. Use the potty, check. Flush the potty, check. Wash my hands, check. Listen to my teacher, check. Dont run, check.. It was adorable. It was like he had a mental list and he was checking off the items that he needed to remember

After I picked him up that first day:
Me How was school
Chris I dont remember
Me Did you have fun?
Chris no
Me Did you make any friends?
Chris no
Me Was your teacher nice?
Chris no
Me Well than maybe you shouldnt go tomorrow
Chris NO! I did have fun. My teacher is nice. I did make friends I just didnt ask them their names.

On Saturday we went to see Happy Feet at the Imax theater. Breanna walks into the theater and goes This is amazing!

We had a good weekend, getting ready for Thanksgiving with the family.

Happy Thanksgiving

Wednesday, November 15, 2006

It looks like we wont go back to NY for the MRI rescan until early December. Believe it or not Ive actually managed to find a sort of optimism about the whole thing. Optimism, denial, whatever it is I am not stressing over it, and considering what is at stake that is good. The power of prayer is obviously working in my life. I now have a new mini-stressor. I got a call Friday night that Chris has been accepted into the 4K program at school. He was tested for it back in August and they found that he would benefit from it, but that he didnt need it as much as some others did. His name was placed on a waiting list. Its a limited class, 20 students, that need extra help to be ready for 5K. School is scary because hes not with me or grandpa or grandma or the babysitter. Hes not the teachers number one (or number two) concern. Hes never been in daycare so hes not been exposed to all the germs that kids get exposed to their first year of daycare. He doesnt have his immunizations up-to-date (in fact if he was given immunizations today they wouldnt do any good, his immune system hasnt recovered fully from the high-dose chemo to be able to positively respond to immunizations hopefully by January it will though). And while I am excited for him to go to school it will be a great opportunity for him. He can make friends, be a regular kid, learn things that I might not think to teach him, etc. I am also a little intimidated by the whole thing. What if the other kids pick on him, or he doesnt fit in. Kids can be mean. I guess its all part of growing up. Someone will hurt his feelings at some point, he will get sick from another kid at some point. We will just deal with it and go on. At the end of the day the benefits will out way the risks. Breanna is jealous. She wants to go to school too. She has started to tell me that Its not fair. Shes not even 3 yet Shes got her dance class. I might look into a 3 year old preschool program for her a couple days a week for after the new year. Shes so smart.

Linda

PS Dont forget about Lunch For Life, 100f your donation goes to researching Neuroblastoma. Every little bit helpsChris' Giving Tree Code - is 19228. If you go to:

http://www.lunchforlife.org/giving_tree.aspx?cid=309

You can view Chris' tree.

Thursday, November 9, 2006

***************************************************************************************************************
UPDATE: Chris' Giving Tree Code - is 19228. If you go to:

http://www.lunchforlife.org/giving_tree.aspx?cid=309

You can view Chris' tree.
***************************************************************************************************************

A lot of speculation but no real news to report. My last update was last Wednesday. Dont remember if I mentioned but the kids had a great time trick-or-treating. Chris was Spiderman and Breanna was a Fairy Princess. They got tons of candy. I brought the wagon for them to ride between houses when their legs got tired and it worked out well.

Friday afternoon I took Breanna in to her drs office to get her flu shot. She was excited to get to go to the dr (I didnt mention that she was getting a shot though) because she always feels left out that Chris gets to go see the Dr and she doesnt. While we were waiting in the exam room for the nurse to go get the shots ready (I was getting one also) I gave her a full exam with all the official dr-type equipment. We checked her ears and shined the light in her eyes. Tested her reflects and her strength. Squeezed on her belly and listened to her heart. By the time I was done she did not feel cheated out of her appointment. The nurse brought the shot in and Breanna did GREAT. She didnt cry, only wimpered for a half second and then was fine. She talked me through my shot and told the nurse that she needed another shot before she could go home. The nurse was amazed. Said that shes had adults give her more trouble than Breanna did. Of course Breanna got her pick of their stickers and a lollipop for being so good.

Saturday we went to see a play Disneys Cinderella and the Jungle Book. They did pretty good. They got dip-n-dots ice cream and wanted to get more 5 minutes into the show when they had eaten them all. Breanna really enjoyed the show. Chris was tired by the end and didnt care for the last 10 mins. That night he had a rough time with what I think was withdraw symptoms from the narcotic pain meds. He was freezing and visibly shaking. I gave him some more pain meds and he did a little better. Usually it doesnt take this long to wean him off them. Sunday he was doing better so we went to church.

Monday he was scheduled to go back to clinic to check labs and make sure he was tolerating the accutane(he started that again last Monday). It was an interesting visit. We got there by 2 and didnt leave until 5:30. They were slow, didnt even look at his lab results until 4:30 when they noticed his glucose was 190. They drew more blood to recheck it and to check his cortisol level. I did some research that night and found that cortisol is the stress hormone produced in the adrenal glands (he doesnt have a right adrenal gland and we are hoping the left one can make up the difference). Low levels can cause the fatigue and high glucose. They sent us home and told us they would call as soon as they got the results from the retest (if the glucose was still that high and it wasnt a lab error they would need him to go to the ER and find out what was causing it to be so high). We had to swing by the pharmacy on the way home to pick up a prescription for his dentist appointment the next day (he has to take a triple dose of antibiotics before and dental visit to prevent an infection) and with traffic didnt get home until 7:30. I am not used to it getting dark so early.

Tuesday Chris had his dentist appointment and did pretty good. He didnt want to cooperate at first finally did. He has a little cavity that they want to fill when we get a chance and said hes doing pretty good. Wednesday we had NO drs appointments! We did have to run to the pharmacy to pick up 2 refills though. Hes still tired a lot and complaining of alternating joint pain (elbows, knees and lower back). He also still is getting cold. Every time I check his temp its low (96.5ish) and Im not sure what that means. Its probably just the late effects pain from the 3f8 treatment and the withdraw from the pain meds. At least we can rule out a couple things. His glucose on the re-check was 130 which is ok for a non-fasting test, his cortisol was 13 also ok(better to check this first thing in the am though). They also tested his thyroid a few weeks ago and that was good too.

We go back to clinic today to draw HAMA labs for NY. These will tell the drs there if his body is producing an anti-antibody. We dont want that to happen yet (sometimes science is confusing, we do want it to happen but not for another year) because if it does we will have to stop this treatment.

Thanks for keeping us in your thoughts and prayers. Ill let you know when we find out when the rescan is.

Oh one more thing. Over the last 2 and a half years weve discovered that there is so much not known about childhood cancer and neuroblastoma in particular. Most children with this disease outlive their treatment options, after fighting bravely for sometimes years they are told there is nothing left to try or the toxicity of the treatments overwhelms them. The only way we can change this and give these children a better chance at survival (the long-term survival statistics given to these children is horrendous) is through research. Obviously this is something I feel very strongly about. ALL of the leading institutions that treat neuroblastoma will and have told us that there is no cure for relapse. They will do the best they can and you hope for long-term remission and that when the disease comes back enough research has been done to give us the edge. Well this isnt just numbers on a chart, this is my sons life. This is other children that I have met, face to face, and seen fight this with all their might. There is an organization called Lunch For Life. 100f the money they raise goes to funding research for neuroblastoma. 100 Their philosophy is that if everyone can donate 1 lunch (just $5) we could literally speed up the research by decades. The fact remains that childhood cancer research doesnt get funded well. There are more adults that get cancer. And its not that I dont support those causes as well, but none of the treatments used for neuroblastoma were actually developed to treat it. They are all second-hand therapies that worked in adult cancers and are passed on to neuroblastoma. Im grateful that these therapies are there, theyve kept Chris doing this well, but can you imagine how we might change the survival statistics if we actually had a therapy that was developed specifically for neuroblastoma? To celebate the holiday season Lunch For Life is doing a contest. All of the children have virtual Christmas trees and when you donate $5 in their names an ornament gets placed on their tree. For every ornament on their tree their names gets entered in a drawing for a trip to Disney. The trip was donated, so dont worry 100f your tax-deductible donation goes to research. At the end of the contest (dec 24th) they will draw a name and send a family to Disney. All of the children are winners though because we are 1 step closer to finding a cure. I dont really care if you donate in Chris name or someone elses, if you can spare even $1 please consider this great cause. OK off my soap box now, Hope you all have a great week.

Linda

UPDATE: Chris' Giving Tree Code - is 19228. If you go to http://www.lunchforlife.org/giving_tree.aspx?cid=309 You can view Chris' tree.

Wednesday, November 1, 2006 7:31 PM CST

I'm a little nervous. I spoke with the dr's in NY about Chris' MRI scan last week. We didn't get bad news, but it wasn't nothing-to-worry-about-sigh-of-relief good news either. There was no neuroblastoma on the scan. They did note that the bone marrow signal was somewhat changed from the last time. The dr said they sometimes see it when the bone marrow is recovering or it could be a sign of disease. They want to do another scan in a month and make sure it is nothing. The CT and MIBG scan done at the end of September were clean but that doesn't fully reassure me, especially when I consider that he's been awefully tired the last 3 weeks, he started having seizures 2 weeks ago and now this. We're going to try and not borrow trouble and worry where we don't need it. Please keep Chris in your prayers that this turns out to be nothing.

On the happy news we are home. Have been since Saturday. It was so nice only being gone for a week. We went to a Halloween Party on Saturday and a Halloween "concert" at church on Sunday. Tuesday they got all dressed up and went trick-or-treating. They had a great time. Chris was spiderman and Breanna was a fairy princess. I've got some photos I'll put up soon.

Thanks for checking on us and leave a message in the guestbook to let us know you were here.

Thanks,

Linda, Chris and Breanna

Thursday, October 26, 2006 7:08 AM CDT

We are halfway through the 3f8 treatment. Overall it is going pretty well. Monday the pain was still there but not as bad as it had been, but his heart rate was near 200 for most of the morning and we had to keep reminding him to take deep breaths as his oxygen stats were dropping into the upper 80s. He despises using the 'blue tube' to get oxygen and that would only make his heart rate increase with his protests so luckily the threat of having to use it if he didn't take a deep breath worked and he was able to bring his O2 stats up every time they dropped. He finally slept and his heart rate eventually came down. We didn't leave clinic till 4 that day. Tuesday was better on the heart rate but the pain and hives were worse. His lips swelled and he was complaining of his throat (that can swell too). At one point we were told that he was saturated in anti-histamines and to wait 30 mins till he could have some more. But it did finally clear up and we left about 3. His lips were still swollen until about 5 though. Wednesday was a mix of the two days. Heart rate in the 180-190s, hives were there but not bad and pain was moderate. Last night was the first night he complained of residual pain in the evenings though. It will be interesting to see what today brings. It is nice to know that we are almost done with this cycle of treatment and we get to go home soon. We meet with the team neurologist today and are going to have an MRI and bone marrows (previously scheduled) tomorrow. The extra appointments will make for late afternoons because we won't start the antibodies until after the other appointments. The oncologist up here are not sure what to say about the seizures. They agree that it sounds just like an absent seizure but have never seen it before.

Wish us luck for good scans and answers to explain these 'episodes' without it being too serious.

Linda

Saturday, October 21, 2006 8:34 PM CDT

The neurologist said that Chris is at high risk for seizures because of all the brain trauma (the tumor resection and radiation) he has had. The EEG apparently showed that there is something going on, it's not a black and white definitely a seizure but it's the most logical conclusion based on the results of the tests. I did some searching on the internet and what they think Chris is having is absence seizures. You temporarily lose conciousness and you stare off into space with a blank look on your face. It lasts about a minute and then you snap out of it and go on with your day. The neurologist put Chris on meds to prevent these episodes and agreed that an MRI was needed. They do not think that these seizures are the results of new tumors but that it is just because of all the trauma to the brain. We will meet with the neurologist on the team at Sloan next week while we are there for anitbodies. They will also try to schedule an MRI for while we are there. I felt better after talking with the neurologist here but after the information sank in I have a ton more questions to ask and am glad that I will get my chance.

Linda

Wednesday, October 18, 2006 9:00 PM CDT

Chris has been acting strange since Sunday night. Sunday he fell asleep in the shopping cart at the grocery store. I thought that maybe he was just tired from a busy weekend. But Monday he was still acting odd. He was very tired, he was complaining that he was cold and trembling and he has these moments that he just zones out. I could almost not notice it but he looks so wierd during these moments. His face is compeletly blank like he is not there. It's really strange. It didn't get better on Tuesday so I called the dr's today. They wanted me to bring him in and make sure his blood work was ok. Low hemoglobin might have explained the tiredness and cold chills. Well his labs looked great. His heart rate was 140 (and this was with him sitting calmly). The dr was a little concerned about that(said it should be about 100) and sent him for an EKG. We did that and won't get the write up on it till tomorrow but the oncologist said that it 'looked' ok. The oncologist said that his zoning out moments sound almost like absent seizures and that he wanted us to see the neurologist. They've scheduled an EEG for first thing in the morning.

I spoke with the team in NY. They agree that his symptoms are weird. They don't think it sounds like it is NB related but aren't quite sure what it is. NY said that they should also do an MRI if they are suspecting a seizure...

Never a dull moment. Please keep him in your thoughts and prayers tomorrow. I'll update when I know more.

Linda

Monday, October 16, 2006

Monday Oct 16

Another busy weekend flew by. Thursday Chris went to clinic for his HAMA draw. It will tell the drs if he can continue with the treatment he is on now. His labs seemed good. Everything is within the normal range (platelets just under normal, calcium at the high end of normal and white count right in the middle of normal).

Friday I took the kids to the rodeo. They really enjoyed themselves. Breannas favorite part was the pink cowgirl and Chris loved it when they were cow roping. Of course they were speechless watching the bull riding.

We didnt get home until 11 that night and they were still up and ready to greet the day at 7 on Saturday. The kids helped cook breakfast and we went to a farmers market. They have a huge farmers market downtown that has food vendors, jump castles, produce, jewelry and more. I got them a snack while we were there, Chris choose a chocolate chunk cookie and Breanna wanted the fruit cup (fresh strawberries, grapes and cantaloupe). She LOVES strawberries. Chris tried trading half his cookie for one of the strawberries and she wasnt having it. She did finally decide that she would give him 1 piece of a strawberry. We went to a pumpkin patch on the way home and the kids enjoyed playing on the kids activities they had set up (jump castles, mountain of hay, etc). I had to practically drag them to the car when it was time to go. In the afternoon we went to Lowes and got some flowers to plant. They got a kick out of helping plant flowers. Trying to keep them from stepping on them was hard. Breanna was trying to hug all of the flowers. Theyre both trying to dig holes and squish the flowers in them. They did enjoy tucking the flowers in with pinestraw. They had to take bathes before dinner, they were covered with dirt from head to toe and Chris managed to water himself more than the flowers. : ) Breanna told all the flowers good night (she was naming them!).

Sunday we kept pretty busy too. We went to church and then had a picnic in the park. We went home to rest and relax (and do laundry) then back to the store for more flowers and some lotion for Chris. His skin is so raw from the accutane that even the lotion burns when I put it on. Ive got a couple different kinds on lotion at home and he complains they all burn. We sampled some in the store and they all seemed to feel good at first and then burn his face. We ended up getting baby oil gel hopefully that will help. By the time we left the store his face was getting red from all of the sampling of lotions. He took his last dose of accutane Sunday night. His skin gets 2 weeks to heal before he has to take it again.

Before I knew it Monday was here again. Im grateful that we are able to have a weekend jam-packed with fun activities, even if the children were less than helpful in some of their helping. We were all together and for that I am blessed. I thank you for checking on us and ask that you remember all the newly diagnosed, relapsed or called home. Cancer never seems to rest.

Linda

Thursday, October 12, 2006 9:43 AM CDT

The first week home from NY is always rough. By the end of the week Chris was in a lot of pain. Friday night it was almost like he was having contractions with waves of pain coming on and causing him to cry out in pain. He was trying to fall asleep on the couch and kept waking up with the next wave of pain. With some pain meds it finally eased and he was able to get to sleep. Saturday he had pain off and on and Sunday he woke up a happy child without a complaint. We can point fingers at what we think the problem is but it is likely a combination of several things.

Saturday he went out with Tonya and went to the aquarium. He seemed to really enjoy it and has been talking about the 'ork whales' all week. I'm not sure if there is such an animal but he seems sure of it. While he was out with Tonya I used the opportunity to have a mommy-daughter day with Breanna. We went and got her first hair cut (she finally has enough hair to need a cut). Afterwards we went to the mall and got her ears pierced. She's very much a girly girl and had wanted it done for a while so that she could wear earings like mommy. She must not have beleived me when I told her it would pinch a little because after we did the first one she wouldn't let them do the second. They lady and I tried talking and bribing her with no luck. We ended up walking around for a few minutes (she picked out a new necklace to go with her pink earings) and then she wanted the second ear done.

Chris goes to clinic today to see if his body has developed HAMA. If it has he will reject the antibody treatment. We're hoping this isn't the case and we will be able to continue on this treatment course for a while longer. Thanks for checking on us.

Linda

Thursday, October 5, 2006 9:07 AM CDT

Were home. Weve actually been home since last Saturday. Theyve changed the way the do the antibodies and instead of it being 2 weeks of infusions they are giving twice the dose in 1 week. The obvious benefits would be that we get to spend more time at home. The drs believe that this new schedule should be biologically equivalent to the 2 week treatment. We did the double-dose of antibodies last week. As expected the side effects were more severe. The pain came sooner, lasted longer and seemed more intense. The hives were really bad. On Monday we didnt leave the hospital until after 4 (had been there since 7:30). His heart rate was as high as the 230s during the infusion. Even after it was done his heart rate wouldnt go below 180 for 3 hours. They finally let us go when it got to 170. He used to need 3 doses of dilaudid during the treatment and 2 doses of vistaril for hives. For the double dose treatment he needed 4-5 doses of dilaudid and 2-3 doses of vistaril and 1-2 doses of benadryl for hives. He also would need rescue doses of in the evenings for pain and hives. It got better as the week went along. By Thursday we would leave the hospital by noon. The treatment did seem to wipe him out though. He was very tired and cranky in the evenings.

We got home Saturday afternoon. I am getting over a cold and was exhausted the beginning of the week from it. Chris has clinic this afternoon to check his counts and make sure the accutane (we started that again on Monday) is not causing any problems.

Thanks for checking in on us!

Linda

Sunday, September 24, 2006 10:08 PM CDT

TUESDAY UPDATE ********
Scan results are looking good. They havent seen the results of the bone marrows but the CT and MIBG were CLEAR!!!! Thanks for all the prayers and happy thoughts.

WoW What a week! Chris had to be back in NYC Weds for scans on Thurs/Fri and treatments next week. We flew a Corporate Angel flight this time. Corp Angels is similar to Angel Flights, free transportation, but they are harder to get. These are Corporate Jets that are already scheduled to be traveling. They allow patients to make use of empty seats on their planes. There is not a lot of availability from Charleston though. We had to drive to Charlotte (3 hours), but it was worth it. It was like flying business class. I guess the plane was flying to NY to pick up some passengers because we were the only ones on the plane other than the pilot and co-pilot. The plane seated 12 and the chairs were like leather lazyboy recliners. The co-pilot offered us ice and soda and cookies/pretzels and crackers. It was so nice.

On Thursday Chris had to go to the hospital first thing in the morning to get a CT scan. This is the first time we've done one without anesthesia so that was interesting. He did really well though. He also had the injection for the MIBG to be done on Friday. Thursday night we got free tickets to see Lion King on Broadway! It was INCREDIBLE!! The show started at 8 and was almost 3 hours long. I wasn't sure how Chris would do with that, but he really enjoyed it. He slept through the last 20 minutes maybe. He was so excited by it all - even I was excited by it all. The story followed the movie almost exactly. The costume were incredible.

We didn't get to bed until almost midnight that night and had to be at the hospital at 7 the next morning. Chris was not ready to wake up. He did the MIBG scan (with anestesia - it's almost a 2 hour scan) and we were out of the hospital by 1pm. I had a friend come up to visit us for the weekend. We drove out to Lancaster county PA to see Thomas the Train. I didn't tell Chris what we were going and he was so surprised. He thought that we were going to see Amish country. I've got some great pics that I'll post when I get a chance.

We've got an early morning so I'll post more later.

No scan results yet but I'll post them when I know. Keep a happy thought.

Thanks,

Linda

Monday, September 18, 2006 8:02 AM CDT

Were halfway through September now. I wanted to share some information you might not know...

September is Pediatric Cancer Awareness Month

General Facts
Each year more than 12,500 children are diagnosed with cancer.
One in every 330 Americans will develop cancer by the age of 20.
Cancer is the leading cause of death from disease in children between the ages of 1 and 19.
Young patients often have a more advanced stage of cancer when first diagnosed. Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread at diagnosis.
The National Cancer Institutes (NCI) federal budget for 2003 was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.

Neuroblastoma Facts
There is no known cause or cure for neuroblastoma.
Neuroblastoma is an aggressive solid tumor cancer that strikes mainly young children and has less than a 30% chance of survival when evidence at diagnosis shows that the disease has spread.
Neuroblastoma accounts for 7-10% of all childhood cancers and well over 15% of the deaths; and yet neuroblastoma is only designated to receive 5% of the research dollars from a national pediatric cancer fundraising initiative

What can you do?
Donate blood kids going through treatment will receive countless transfusions. Without these transfusions they would not be able to receive the harsh treatments they do.
Donate platelets I believe platelets only have a shelf life of 3 days. Chris has received almost twice as many platelet transfusions as blood transfusions (and he's had dozens of blood transfusions).
Donate money my favorite charity is Lunch for Life - ALL funds go directly to support neuroblastoma research. There is also Childrens Neuroblastoma Cancer Foundation .

Where would I be without Ronald McDonald House Charities? Without them I wouldn't have been able to get the treatments Chris needs from out of state. Then there is Caringbridge. If you're reading this page you understand the importance of free webspace to keep friends and family updated.

You can volunteer your time. It is wonderful to have volunteers in the hospital to play with the children in the playroom or come visit them in their rooms when they aren't feeling well enough to leave their rooms.

A cancer diagnosis changes EVERYTHING. I will never be able to look at things the same way again. Last month on Chris' b-day we were in the hospital in NY getting treatments. One of the nurses asked me if it seems like yesterday that he was born and I told her that the opposite is true. It seems like a lifetime ago that he was born - when I was a first time parent and my concerns where is he old enough to take a tub bath or start solids. I have been forever changed and I will never be the same. I was naive before to how much children do suffer.

Wednesday, September 13, 2006 2:03 PM CDT

Chris is home and recovering nicely. They never said what was wrong with him but by Saturday he was doing better. His labs all looked good. They did an x-ray and found that he was very constipated but that doesn't explain all of his symptoms. He didn't drink all day on Thursday and that didn't help the constipation or the accutane effects. 2 days of fluids later and he was finally playful again. He was really hurting on Thursday. He wouldn't even let the dr exam him. He never gives a dr that much trouble. He didn't want to talk to anyone and we went through probably 2 boxes of hot packs Thursday night thru Friday.

Chris is now on week 2 of swallowing pills. He is really doing great at it. He doesn't fight with me to take them anymore. His skin is starting to dry out from it but not too bad yet. He goes back to clinic tomorrow to see how everything is doing.

We have enjoyed doing some 'normal things' this week - riding bicycles, helping make oreo pudding and homemade lemonade.

Linda

Friday, September 8, 2006 9:24 AM CDT

Chris was admitted to the hospital last night. He wasn't feeling good yesterday, complaining of leg pain (behind the knees) and mouth pain. In addition he was looking pale, acting lethargic and not eating or drinking. He is constipated and that is causing him stomach pain and might play a role in the lethargy/eating/drinking issues, but shouldn't be causing the mouth and leg pains. My biggest suspect for that is the accutane he started on Monday. The dr's haven't come around yet to answer any questions, hopefully when they do we will know more.

Tuesday, September 5, 2006 7:11 AM CDT

We are now back home. Tropical Storm Ernesto put a delay on our return flight but we got back in Sunday night. The kids are settling back into the routine. Chris started on another medicine yesterday. He's got to swallow 2 pills in the morning and 1 at night. The medicine is accutane (what they give teenagers with acne) - In high doses it's been found to keep neuroblastoma from coming back. It can have some severe side effects - extremely dry skin, mood changes, seeing and hearing things that aren't there, depression, etc. Last time he was on this they had to lower the dose because his calcium level shot through the roof. They put him on the full dose this time and are going to watch it carefully to see if they need to lower the dose (just because he had a reaction last time doesn't mean he will this time). I hope that they can give him the max recommended dose (it's more effective) but high calcium can damage the heart valves. We go in this afternoon to draw labs and see how he is doing.

Tuesday, August 29, 2006 11:47 PM CDT

Network problems have kept me from updating sooner. Things are going as can be expected. We are almost halfway through the second week. Last week we had a ball running around the city. Took the subway to Times Square and played at the Thomas display for like an hour. Went to central park for Spongebob icecream. We even took the subway down to the bottom of manhattan and took the Staten Island Ferry. It's a free ride and it's got a pretty view. We got out of the city this weekend and hung out with my aunt/uncles and cousins in NJ. Chris had a blast playing with the kids. They even organized a b-day party for him. Thanks guys! He loved spending time with everyone.

Treatment is going ok. Chris had a rough day yesterday and today. A lot of pain. Usually he deals ok with it (with the pain meds and having things just so). Today that was not the case. A lot of yelling and screaming today. He didn't want the dr's in the room. He didn't want me to look at him, etc, etc. He also got really bad hives. Even now hours later he has a red pin-prick rash that won't go away. Hopefully tomorrow will be better. I think I'm just going to tell him it's a "great day today" when he wakes up. For some reason if I start the day telling him that he cooperates more.

The weather here has been odd. It's been in the mid 70's and dreary/rainy. I didn't bring any sweatshirts for him so I had to buy him one this afternoon. The dampness was just sinking into his bones. It looks like the hurricane is going to cause some trouble at home. Hopefully it won't be anything too serious and won't delay our return flights on Saturday.

Monday, August 21, 2006 8:21 PM CDT

This update coming to you live from NYC.

We're back in the swing of things. First day down. We had a good weekend. Celebrated Chris' b-day at home on Saturday with a party at the park. The kids had a great time. Chris got some cool toys and of course wanted to bring them all with us. Chris and I flew up on Sunday and beat the storms. The weather up here was beautiful today. I thought I would try and handle the pain differently this time. He mentioned to everyone that he likes to come to NY b/c he gets the 'sleepy medicine' (dilaudid). So I thought I wouldn't be so quick to have the nurses give him another dose and try and see if he could manage more of the pain without the narcotics. HAHAHA. As soon the pain started I that the pain is real and he really does need it. When I asked the Dr's about it they said not to worry, he's not the first kid that looks forward to that part of treatment.

Overall it went well today. Mondays are always slow at the hospital. They weren't ready to start until noon despite the fact that we got there at 7:30. We got to leave about 2:30, went back to the ronald to rest until 4:30 and went to the park to play.

Thanks for checking on us. We appreciate all the thoughts and prayers.

Linda

Wednesday, August 16, 2006 1:07 PM CDT

The dentist apt went surprisingly easy. He actually said it didn't look that bad and that we could wait a couple of months before something needed to be done (I guess he's not used to dealing with platelets that are only less than 100% and he thought they might be better in a couple months). Of course Chris has been complaining of pain so I told him I wanted him to go ahead and fix it now rather than later. It was a quick drill and fill and Chris did excellent. He hasn't complained of any pain since. I was surprised at the change in Chris counts from Thursday to Monday. His platelets went up marginally 84 - 90, hemoglobin went up 9.7 - 11 (normal!) and wbc dropped 5.6 - 3.2 (interesting but not concerning). He started the GM shots today for cycle 2 of antibodies (that'll make his wbc go up). We travel back to NY this weekend to start them on Monday. We're still waiting to hear back on flights and hopefully we can get them on Sunday so we can have a b-day party for Chris on Sat. He turns 4 on the 24th. I'll post the address for the Ronald in case anyone wants to send him a card.

Linda

Sunday, August 13, 2006 9:35 PM CDT

Last week started out on the right track but somewhere in the middle things went wrong. Chris saw the head/neck dr Thursday and everything was fine. We follow up in 2 years. Then we went to clinic to have the blood drawn for HAMA. Rutledge Tower of the hospital aparently had a damaged water main which meant that not only could you not use the water (bathroom, water faucets and dr's couldn't wash their hands) but the ac wasn't working either. They made us stick around for a CBC and everything was ok. Platelets were 84K(less than normal but still plenty), hemoglobin 9.7(less than normal but good), and wbc 5.6(normal). After we left there I had to go to fedex to ship the blood sample (They do raise their eyebrows when you tell them you want to mail blood ). To overnight the blood it cost $54. Outrageous. But what can you do. It had to be overnighted. That took up most of the day. I signed Breanna up for dance that night.

Friday night Chris tells me his tooth hurts a lot. I look and it appears he has a cavity, right on the surface in the front. I've had 4 calls back and forth with the dentist this weekend to keep an eye on how he's doing and they started him on antibiotics. In addition I've had 3 conversations with his oncologist. Tomorrow I've got to take him to clinic to check his counts and get their approval for the dentist to fix or pull the tooth. They're worried about the risk of infection and the risk of bleeding excessively from lowered platelets... Should be a fun day I'm sure.

Never a dull moment.

Linda

Tuesday, August 8, 2006 6:38 AM CDT

Well we finished the week without having to go to the doctors! I think thats probably the first time ALL year that that has happened. :) The beginning of last week was a little rough it took a couple days for Chris to transition of the morphine and for his bowels to start working again. We had a good weekend cant even remember what we did, but we didnt stop moving the whole time. Monday Chris had his testing for 4yr old kindergarten. He probably wont get in though. They only take the kids that are at risk for not being ready for kindergarten. The teacher said that he might need a little help with speech (pronunciation only he has a huge vocabulary) but that it might just work out on its own. They had me filling out paperwork in a different room so Im not even sure what they asked him. Thursday Chris has his follow-up with the head and neck oncologist to see how things are going. This is the guy that is following Chris original tumor in the face. It had ate away the cheek bone on the right hand side and hes following him to make sure that he doesnt need to have a bone graft down the road. After that appointment we have to do our HAMA draw. He will continue to receive antibodies in NY until his body develops a HAMA (human anti-mouse antibody I think). In short if he develops HAMA there would be no reason to continue giving him antibodies they would do no good. So to check for this he has to have his blood drawn the second Thursday after the end of a 2 week cycle and I have to Fed Ex it to NY. They will test it and let us know if there is a problem. They dont expect him to have HAMAed yet, but some kids do.

Also this week I am taking Breanna to register her for a 2 yr old dance class. She will learn tap, ballet, and tumbling. I think this give her something that is special just for her. Its a once a week class for 45 mins. We will have to go out and buy a tu tu, and tap and ballet shoes. Ill post pictures after we get them. She LOVES to dance anyway, so Im very excited for her.

Linda

Tuesday, August 1, 2006 7:13 AM CDT

I cant believe its August. It seems like the older I get the faster time flies by. In all fairness we have been very busy. Where to start???

New York Were starting to get a little more comfortable in the city. Chris favorite things to eat there are McDonalds (nearly every day on our walk home from the hospital he wants a plain hamburger), KFC (its about 2 blocks from the Ronald) and cheese pizza slices from the shop around the corner. He didnt really have an appetite the first week we were there but the second week he made up for it.

3F8s Ive been meaning to write more about how this goes. 3F8s are another name for the antibodies. When we get to the hospital (usually between 7:30 and 8) they make sure his port is still working, draw blood for labs and hook him up to a pole. They give him pre-meds to prevent some of the side effects vistaril (helps with the hives), zofran or their equivalent (helps with nausea), Tylenol (helps with allergic reaction) and dilaudid (similar to morphine - for pain). They are usually able to start the 3F8s by 10 (later on Mondays). Those go for 30 mins and usually he is fine for the first 15-20. Then the pain comes. At that time we get him hot packs for his stomach and a rescue dose of dilaudid. At about this time the 3F8s infusion is done and they hang the flush. By now he needs another rescue dose of dilaudid for pain. The pain is unlike any Ive ever seen him (or anyone really) experience. Its like hes uncomfortable in his own skin. You can literally watch the pain wash over his body. He clenches his jaw, closes his eyes, tries to sink back into himself, moans, grunts and wants things just so. The light in the room bothers his eyes (we close the blinds and turn off the lights). A couple minutes into the flush once I have him in a semi-comfortable state of discomfort the hives come. Usually on his face and then they spread to his chest and back. They will give him another dose of vistaril. About 30 minutes later the pain lets up and he feels weak and tired. It takes about another hour for the hives to go away. Between 12:30 and 2 we usually get to leave for the Ronald. Im not sure if its the narcotics or the 3F8s but after that he is almost OCD for the next 2 hours. Everything has to be just so or he looses it. Its not like a typical temper tantrum. His voice sounds hoarse and his eyes are blood shot and hell scream and carry on about how Im doing something wrong (his drink should be in his other hand, his hamburger bun is bigger than his hamburger, etc). But this is completely normal for the kids going through this. I would normally try and get him to rest for a few hours in the afternoon and when that didnt seem to work we would get out of the room. Walk to central park, around the block, play in the playroom, whatever.

Aside from the drama of the morning he does like to go to the hospital. He gets to play, watch tv and eat cereal for about 2 hours before the pain comes. And in the late afternoon or evenings we would either do something fun at the house if they had something going on or go find something fun in the city.

He loves walking to the hospital in the morning. He shows off his southern charm by telling every man, women and dog Good Morning. Most of the New Yorkers act like they are completely taken off guard by the simple greeting. Some will continue walking without making eye contact and others will smile and brighten up as they tell him good morning back.

We are home for 3 weeks before we have to go back. He actually doesnt have any drs appointments this week! Hes got 2 next week though. He starts the second round of 3F8s August 21. Its another 2 week cycle and they will check his bone marrow after the cycle. They typically do it the Monday following the last day of treatment but that is Labor day and they dont want to make us stay in NY through that Tuesday so we are going to do the bone marrows Friday before or after the 3F8s. This is going to make for a very long day b/c hell have to have anesthesia for the bone marrow biopsies and tons of narcotics for the 3F8s.

Its good to be home. We got in about 5 on Saturday and Breanna was so excited when Chris got off the plane. They have been very good running around playing and getting into trouble together. Chris has not had any residual pain since we got home. Hes starting to get his energy back.

Thats it for now.

Linda

Monday, July 24, 2006 9:05 PM CDT

I just realized I still hadnt gotten back to post another update.

Were over half way through the first round of antibodies. Chris is doing really well all things considered. That is not to imply that he doesnt have any pain with it he has a great deal but he hasnt required any oxygen (some kids apparently hold their breath with the pain) or needed a nebulizer treatment (some kids do). The beginning of last week was very hard. I didnt realize how hard it would be on him. The antibodies only take 30 minutes to go in his IV and another 20 minutes to flush the line afterwards. He doesnt even get pain until the last 10 minutes of the infusion. But then it is STRONG. He gets a dose of dilaudid (like morphine) before they start everything. And then he will get another 2 doses after the pain starts. Even with all of that he still is very uncomfortable. But he is managing the pain better now. We have a system that seems to help. It ends up being about 4 5hours in the hospital.

Thank you for all the thoughts and prayers.

Linda and Chris

Thursday, July 20, 2006 9:55 PM CDT

ACK. I just entered a long journal entry and then lost it.... I'll update more tomorrow.

But for now we are alive. The begining of the week was VERY ROUGH but today was better and we are looking forward to having the weekend off.

Thanks for checking on us.

Linda

Thursday, July 13, 2006 7:33 AM CDT

We made it home safe. We got in about 9pm on Saturday and haven't stopped moving since. Sunday afternoon I took the kids to the Riverdogs (minor league) baseball game. They had a blast. Chris didn't stop eating the entire time we were there and Breanna managed to 'adopt' some grandparents that were sitting next to us. She walks right up and hugs the lady and then sits down beside her.

After being home for 4 nights Breanna has finally calmed down at bedtime and settled back into a routine. The first couple nights we were home she was causing a lot of trouble at bedtime. She did the cutest thing the other night. She decides she is going to dance. She stands in the middle of the living room floor and she taps her foot while singing "Listen to the beat, listen to the beat" and then she prances around in a cirlce singing "All Around. All Around" and then she starts tapping her foot again "Listen to the beat." It was sooo cute. I don't know where she gets it from but she is very creative.

Now for some Chris news. All of his scans came back clear! This means we are good to go with starting treatment in NY next week. He had a follow-up appointment with the ENT yesterday. They decided he had too much wax in his ear and had to remove it. I was amazed at how much they got out of it! It was probably about 3/4 of an inch long and the diameter of a pencil. And then on the right ear not only did he have wax in it, but also what appeared to be dryer lint. I'm still puzzled by that. But after cleaning all that out of his ear the ENT said that is the best he has seen Chris' ears ever.

Friday, July 7, 2006 8:54 PM CDT

Chris is done with his scans and the preliminary results look good! We won't have final results until next week.

We flew into New York on Wednesday and had quite an adventure. We were flying out of Charlotte (about a 3 hour drive from home). There was some bad weather in the northeast and our plane was late getting there 2 hours and then there was a ground halt in laguardia so we couldn't take off for another hour. It wasn't all bad though. We met a family that was also waiting on the flight. They had 2 little boys, one Chris' age and one a little younger than Breanna. The boys entertained each other, playing airplane (running around with your 'wings' out), and watching the Thomas DVD I brought. Chris even shared his Thomas book with them on the flight. When we got into New York I lucked out and found the NICEST cab driver ever. He gave us a ride from the airport to the Ronald McDonald house, the fare was $30 and he wouldn't accept it. He told me to spend the money on Chris. I was amazed. It's heartwarming to see how kind kind people will be to strangers.

The weather has been great, a little cool even. Tonight the house had a picnic at Central Park. We're looking forward to going home tomorrow.

Linda

Friday, June 30, 2006 12:27 AM CDT

Chris has been awfully grumpy. He was crying last night that he wanted to sleep at the hospital that he was sick and that he had a fever. He didnt have a fever. The only thing I can think of is that he didnt feel good his mouth is still sore and hes really constipated again. When he is being that insistent that he needs to go to the drs it makes me second guess whether he does need to go He finally calmed down and went to sleep.

Breanna now has a cold. Maybe that explains her recent lack of coordination. She is SO active and recently has been bumping into things. She busted her lip while dancing the other night. She was twirling around, tripped over a toy and caught her lip on the edge of a chair.

We are scheduled to be in NY end of next week for scans. Scans always make for a nervous time. We just finished high dose chemo so everything should be good. We have had some symptoms we have never had before with these last 2 rounds of chemo though (leg pain, eye pain). Please keep him in your prayers for CLEAN scans.

Thanks,

Linda

Thursday, June 29, 2006 7:22 AM CDT

Sorry for the lack of update - busy busy busy

We got to go home yesterday! Chris' ANC jumped from 0 on Sunday to 786 on Wednesday. He got blood and platelets before we left (they finally realize that it's a bad idea to send him home with borderline platelets - he's a very active boy). I'll update more later today...

Linda

Sunday, June 25, 2006 7:06 PM CDT

This update is coming to you from what is becoming "our room" at MUSC. We have had this room 4 out of the last 6 times we've been here. Chris went into clinic on Friday and his platelets were VERY low again (only 10). He is covered in bruises from head to toe. They only gave him a half unit of platelets on Weds. He got a full unit on Friday and the bruises are finally starting to heal. We got to go home from clinic and all was well until bedtime. Chris was acting a little cranky all afternoon and by bedtime he had spiked a fever. So far his cultures from Friday night are negative. His anc was 0 on Friday and Saturday and 30 today. We're hoping it's on an upward trend. Chris has been feeling ok. His only complaint is that his mouth hurts. He's not eating or drinking alot but that's normal too. We'll be here at least another few days.

Breanna is doing good. She's starting to seem much more 'grown up'. She's almost 2 1/2 now and such a girly girl.

Hope everyone had a good weekend.

Linda

Friday, June 23, 2006 6:42 AM CDT

The Proper Procedure

I think I must be overworked. When I put the kids to bed they know that if they need something (a drink etc) they are supposed to call me and stay in there bed. So last night after I had put Chris to bed and back to bed about 5 times he comes and knocks on my door. He wants a drink. I walk him back to my bed and catch myself telling him You know the correct procedure if you need a drink.. Yeah. Can you tell what we've been dealing with at work all week?

Chris is doing good. Hes been home since Monday and Ive only considered taking him to the ER twice. On Wednesday he went to clinic and despite having lots of energy and running all over the office he needed blood and platelets. That night his port site started oozing/bleeding. It finally stopped with some pressure though. And then last night he was just cranky, you could tell he wasnt feeling good. The Drs said he might get an infection without a fever this time and to be on the lookout for him not feeling well So well see. He finally calmed down last night and was ok.

We go back into clinic today to check his counts. On Wednesday his anc was 10 but it was probably too soon to say that it was on an upward trend. But we can hope. They want us back in NY in 2 weeks for scans. Im not sure his counts will be recovered enough (he might still be needing blood and platelet transfusions that week) but we wont know until the end of next week. Im not looking forward to traveling the Weds after 4th of July but oh well. We have to start antibodies no later than July 31.

Have a great weekend

Monday, June 19, 2006 12:58 AM CDT

If you noticed the pictures are missing, Im working to resolve those issues.

Chris went in the hospital Friday because he needed the blood and platelets and his anc was 0. He has been there all weekend and today they actually said he can go home. Which is unusual because his anc is still 0 and usually they make you stay until after it is starting to recover. But he also usually has a fever which requires that they keep him. He is still highly likely to develop a fever in which case we will have to rush back to the hospital, but until that happens we will enjoy being at home.

Other than spending the weekend in the hospital Chris is doing good. He felt bad on Friday but he was severely anemic (needed blood). After the transfusion he was in a much better mood. The doctors have noticed that he does have mouth sores and although he is eating a little, they do cause him some discomfort. All in all things are going ok.

If you have a chance visit one of Chris fellow nb fighters. Benny is an adorable five year old that has been fighting a little longer than Chris. He relapsed in October and has not been as lucky as we have. They dont think he has much time left. Im sure his family could use your thoughts and prayers.

Linda

Saturday, June 17, 2006 10:32 AM CDT

We're back at the hospital. Chris' counts are non-existant. Anc was 0, wbc was 50. He also needed platelets and blood. He is in a much better mood now that he has gotten those.

Linda

Wednesday, June 14, 2006 6:13 AM CDT

We're home now.

They finally let Chris go at noon yesterday. He didn't have a fever all day Monday or Tuesday. Nothing grew in any of his blood cultures so they're pretty sure it was chemo related fevers. The thing that still confuses them is his mouth pain. He is complaining his mouth hurts. It was so bad that he would wake up in the middle of the night crying that it hurt. Tylenol seemed to take care of it. His counts yesterday were great (anc was 1400) so we are not concerned that he has mouth sores, but it's something. They sent him home on tylenol with codeine for pain. He slept through the night good, but did need some tylenol before bed. He was acting like a stiff old man with sore joints.

Linda

Sunday, June 11, 2006 10:00 PM CDT

We started chemo Friday and it has been an interesting stay thus far. Of course they didn't actually start the chemo until about 4:30 pm. On Saturday morning he started complaining that his leg was hurting him again. He hasn't mentioned leg pain since the last time we were here (in the same room coincidentally) getting chemo. I asked the dr about it being a side effect of the one drug they are giving him and she reluctantly agreed that yes it is a possible side-effect. We sure would have loved to have that information last time when we were stressing out and doing xrays and bone scans to relieve our anxiety (still probably would have ended up doing them though...). By mid-day saturday he was complaining his eyes hurt (again I think this is the one drug), and by Saturday evening he was spiking fevers. He spiked once Saturday night and then again in the morning. He woke up from his nap complaining that his cheeks were red and his head was hot (another fever) and then he spiked again at bedtime. They started him on an IV antibiotic yesterday. And so far his cultures are negative. I'm thinking it's probably just from the chemo. He had the same thing happen last time. With any luck the fevers will stop and we can go home sometime tomorrow. Tomorrow is his last day of chemo. They don't do labs everyday during chemo just first day and last day, so tomorrow we will be able to see just what his immune system looks like.

Thanks for checking on us.

Linda

Friday, June 9, 2006 8:26 PM CDT

Well after MUCH trouble we are at hospital and about 5 hours into Chris' chemo. We thought he would be good enough yesterday, but it turned out his anc dropped from Monday (920) and was the same as it was a week before.... Platelets were higher though. They wanted to wait until Monday to recheck. I thought it was worth a shot to see if they would be ready today so I asked if we could check them and they said YES. So we came into clinic today needing his anc to be 750 (it was 620 yesterday) and wouldn't you know it, his anc was 750 exactly. So we got to come over here. They did manage to start the chemo earlier this time, so that is nice. We only have to wake him up every hour until midnight (they have to make sure he is urinating once an hour).

Hope everyone is doing alright and thanks for checking on us.

Linda

Tuesday, June 6, 2006 7:21 PM CDT

Clinic yesterday went good. Counts are starting to come up. His platelets were 61, anc was 900 and rbc was 11. He should be ready for chemo by the end of the week.

Not much else to report - everything else is going good....

Linda

Friday, June 2, 2006 8:27 PM CDT

Took Chris to clinic yesterday. His ANC was down (610)from Sunday (2000) but that's probably b/c we stopped the GCSF shots. They want us to come in on Monday to make sure that they are not still dropping. His platelets were up (31) from Sunday (23) but still low. They have to be 75 to start chemo. ANC has to be 750 also. The surprising news was that his RBCs were 7.7 so he needed a blood transfusion. They're thinking he will be ready to start chemo the end of next week.

We've been home a week now. It's nice being able to finish unpacking from the last trip before we have to pack for the next trip. Hope everyone has a great weekend!

Linda

Tuesday, May 30, 2006 7:07 AM CDT

We had a GREAT weekend at home. We got home Friday afternoon. Breanna was SO HAPPY to see Chris. She gave him a huge hug when he walked in the door. And then they ran around the house for a half hour. We spent the weekend doing some much needed cleaning, shopping and relaxing. We had a home health nurse come out to draw some labs on Sunday. This nurse is Chris favorite home health nurse. She has been coming out for 2 years now. Breanna climbed up in her lap as she was doing her paperwork and Chris literally danced and sang when he saw that she was coming up the driveway. It turns out that his counts were GREAT Sunday. His ANC was 2000. Im not completely sure that I believe it but Im not going to argue. At first I thought for sure they had switched the specimens at the lab but his platelets were 23 (LOW) and I believe that. Chris isnt scheduled to go back in to clinic until Thursday when they plan to admit him if his counts are good enough. I expect his ANC to go down a little we stopped the GCSF shots on Saturday. Hopefully his platelets are starting to recover, but I dont think they will be good enough by Thursday (I think they have to be 75 on there own without a transfusion).

Thank you for all the thoughts and prayers.

Linda

Friday, May 26, 2006 11:48 AM CDT

WE GET TO GO HOME TODAY!

WE GET TO GO HOME TODAY!

WE GET TO GO HOME TODAY!

ANC was 248 today and they are letting us go.

Linda

Thursday, May 25, 2006 11:46 AM CDT

Every now and then the reality of the situation hits me. Today Im overwhelmed.

First Chris is doing good. His ANC is 120 today. If it doesnt go down again we might be home sometime this weekend.

When Im in the thick of things its easy to ignore the big picture and concentrate on one day at a time. Last night Josh stayed with Chris and I got to go home to see Breanna. It struck me that in the last 18 days Chris has been in the hospital 16. I have been home to put Breanna to bed 4 of those 18 days. In addition she has been sick the last 2 weeks and hasnt felt well or been able to come up to the hospital to visit. When Chris is in the hospital she stays with my Mom. My Dad and my brother help out with her also. I am grateful that I have the support to be able to stay in the hospital with him. Not all parents are able to do that and I have seen some children left alone in their hospital rooms because the parents have other children to take care of. But it struck me that in her eyes she probably thinks Chris is the lucky one. He gets to go on airplanes and train rides. He gets to go to the hospital to play in the playroom. He gets Mommys attention all to himself. And even when Mommy goes home to see her, he gets Daddys attention. From a 2 year old perspective it sure seems like she gets the raw end of the deal.

Today my brother is staying with Breanna and my Dad is staying with Chris in the hospital so that I can get some hours in at work. My job has been very good at allowing me to work around Chris schedule, but this is the 3rd week in a row we are in the hospital and Im not getting as much time in-between visits to make up hours. I have to work to pay bills and keep my insurance but I feel like I am being pulled in a million directions.

I spoke with the Drs in NY today to see if Chris was hit hard enough with this round of chemo that we wouldnt need to do another before we can start with antibody treatment. She said that we need to wait and see how his counts recover but that she certainly thinks 2 cycles would be better. UGH. This last cycle has had us in the hospital for 95% of it. And then I think that he has clean scans do we really need to subject him to more chemo? Are antibodies really worth it? Weve been dealing with relapse therapy for 5 months now with no end in sight. The standard treatment our local hospital wanted to do was the surgery, radiation and 6-8 months of high-dose chemo (but not as strong as the last one we got). That is starting to look like it would have been easier than the road we chose to take, we would only have maybe 2 months of treatment left. With antibody we have another month of chemo and then somewhere between 4 months and 2 years of antibody therapy. But with the 6-8 months of chemo the local hospital wanted, they guarantee he will relapse again and it will just get worse each time. The antibody treatment in NY is not going to cure him but should give him a better chance at staying in remission longer than if he didnt get it. Chris is so strong and doesnt really complain and here I am feeling like its not worth it. Of course its worth it. Its his life. But I dont feel like Im strong enough. So many other families have things much worse than us. At least Chris is still here to fight this battle. There are still treatment options for him. Every now and then you just need a good cry a big dose of perspective.

Thanks for listening to me complain. Sometimes I just need to get it out so I can continue on.

Linda

Wednesday, May 24, 2006 8:10 AM CDT

Yesterday everyone got excited when Chris' ANC was 9 (normal is 2000 but it has to be 200 for 2 days before we can go home). They started talking about when we go home we will need to continue IV antibiotics until his counts are back to normal. They even had the home health nurse come talk to us to make sure we knew how to do the IV antibiotics. All that excitement and talk of going home (we have been in the hospital 15 of the last 17 days) and his ANC is 0 today. Very disappointing.

Today his platelets were 13 (normal 140) so he got another transfusion that makes 7 in 10 days. We take it for granted that when he needs blood products they will give them to him, but when I stop to think about it, there is someone on the other end of every bag he gets that donated their time and the gift of life. Without it there is no way these kids could get the harsh treatments they do. If you donate blood THANK YOU.

Chris is still doing good. Hes eating his standard breakfast bacon, waffle, and 3 jelly packets. Last night we had to call the dr in at 7 pm. He had gotten a bead stuck in his ear. The day before in the playroom he had made a crown and we glued jewel beads on it. He apparently picked them off. He was very nonchalant about it. He was playing with one on the windowsill and said I wish I could get the other one out of my ear. Luckily they had no trouble getting it out after we convinced him it wouldnt hurt and had the dr demonstrate on his teddy bear. :)

Thank you for checking on us.

Linda

Sunday, May 21, 2006 9:25 PM CDT

We're still in the hospital. His anc is still 0. Yesterday he got 1 1/2 units of platelets and a unit of blood so those counts were good today. The dr has increased Chris' GCSF dose. They aren't too concerned about it and said we might be in the hospital another week. UGH. He is still eating a little and playing.

I took Breanna to the Dr on Sat and she has tonsilitis. Poor thing feels sick and I can't be there every night to put her to bed. Hopefully now that she is on medicine she will start to feel better.

Linda

Saturday, May 20, 2006 7:22 AM CDT

No such luck as having the counts up today. His anc is 0 today. His platelets were 11 so he is getting those this morning. It'll be interesting to see what the dr's think on it all. There is still the possibility that he might need to get some of his stem cells back (if it takes his counts too long to recover on their own).

Linda

Friday, May 19, 2006 7:50 AM CDT

Day 5 in the hospital. Today we were supposed to have finished our first round of antibodies, instead we are stuck in the hospital trying to recover from high dose chemo. His counts aren't doing much. His Anc is down again - 7. It was 40 yesterday and 7 the day before. His white count is 150 today. His platelets are 22 today. Hopefully he will get platelets today (sometimes they want to wait until it's under 20) b/c he keeps bumping his head on things.

He seems to be in a good mood most of the day though. Yesterday the toy cart came around (every Thursday volunteers bring toys around for all the kids) and he picked something out for his sister - what a sweet heart. They let him get something also since he was so sweet. Speaking of Breanna she is doing good. She's been eating her weight in strawberries this week. She LOVES strawberries.

Thanks for checking on us. Please say a prayer that this chemo hit Chris hard enough that we don't need to do another round and that he starts to recover.

Linda

Friday, May 19, 2006 7:50 AM CDT

Wednesday, May 17, 2006 9:33 AM CDT

Good Morning. Things are going as could be expected. Chris immune system is still non-existant. His wbc should start coming back soon. In the 3 days we've been here Chris has gotten 2 platelet transfusions and 1 unit of blood but that is all 'normal' also. He is very cranky when he wakes up and has a sad little cough. I think he's got mouth sores (kinda like open blisters on your cheeks, tongue and in your throat). He's doing good taking the mouthwash they give him to help them though. After he wakes up and his isn't as cranky. This morning he is actually eating crackers and drinking tea. He's not running around anymore, content to lounge around and watch videos with a few bursts of energy to get into trouble.

Thanks for the thoughts and prayers.

Linda

Tuesday, May 16, 2006 7:39 AM CDT

Back in the hospital

I took Chris to clinic yesterday for his checkup. He had a fever when he walked in. They drew blood cultures and started an antibiotic. Even if his blood cultures didn't come back positive they would keep him in the hospital until his counts come in. His white count was 100 yesterday (was 4700 on Friday) and his anc was 4 (2300 Friday).

He's feeling a little better today, he got blood and platelets last night.

He's hollering for me now... Update more later.

Linda

Sunday, May 14, 2006 1:16 PM CDT

Happy Mothers Day.

We got to spend the day together at home! They sent Chris home on Friday. He didn't spike another fever and the blood cultures didnt grow anything. The thought is maybe a virus. Breanna had the same symptoms at home all week(loss of appetite, runny nose, clingy) but without the fever. I started feeling bad on Friday, got a fever friday night and ended up going to my dr on Saturday. Got an antibiotic and a decongestant. Whatever it is it's going around. I hope Chris can shake it before his counts bottom out. He's doing all right. He's eating and drinking more now that he's home, but still not a lot. He's whiny and his voice sounds hoarse. He also has a rash all over his chest and back... The dr's said it's probably from a virus and to wait until we go in tomorrow.

Breanna's starting to get over her cold. Anytime I'm gone for a few days with Chris in the hospital though it takes a few days to settle back into a routine.

Hope you all enjoyed the weekend.

Linda

Thursday, May 11, 2006 7:19 PM CDT

Chris' counts today were actually ok. His wbc was 4700, anc was 4200, plts were 75 and rbc was 9.3. The dr's think the fever last night was maybe caused by a virus or maybe a reaction to the chemo. If he doesn't spike another fever and nothing grows in his blood cultures we should get to go home tomorrow. So far no more fevers (it has been a little high though) and the cultures are still negative (they will continue to watch them until tomorrow). He has felt a little off today. He hasn't ate all day but a few bites, but he is asking for crackers now....

Thanks for checking on us.

Linda

Thursday, May 11, 2006 6:55 AM CDT

Well we didn't get to go home last night. Chris spiked a fever at about 8pm (we were supposed to go home by 11). He wasn't acting like he felt bad, but his cheeks were red. His temp was 101.7. They drew blood cultures and started him on an antibiotic. This morning he woke up with a sore throat and little cough and another fever (100.6). I'm still waiting to hear what his counts are today. I'll post more later.

Linda

Wednesday, May 10, 2006 10:41 AM CDT

Day 3 in the hospital.

We are 38 hours into the chemo. He is finished with 2 of the drugs and will get the last one today and tomorrow. They offered to let us go home tonight after the mesna (protects his kidneys I think) finishes running at 10pm. We would go into clinic tomorrow to get the last dose of the topotecan. It sounds like a good plan. Otherwise who knows when we would get out of here tomorrow. Although Im sure it wont be finished at 10, probably more like midnight but its worth thinking about.

Chris had a rough start to the day. He did great last night with having to wake up every hour to pee. This morning he woke up with leg pain. When shown the picture scale of how much pain is it He pointed to the 5 (on a scale of 1-5). He was in a lot of pain. Sobbing and carrying on. We got him heat packs while we waited for the doctors to come over and decide if he could have any medicine. The heat worked a little and they finally gave his some Tylenol. Within 45 mins he was sitting up and eating a bowl of cereal (he wanted nothing to do with food before that). Leg pain is scary. The drs said if it happens again we will do an x-ray and maybe a bone scan. Im not even going to think about what would cause leg pain and instead am going to think it was just a fluke.

Linda

Tuesday, May 9, 2006 12:50 AM CDT

We are in the hospital again. We got to clinic yesterday by 10. We didn't get admitted until 2, and they didn't start his chemo until 9:30. The cytoxin required them to check his urine every hour. They ran that from 10-4am. It was a lot of fun waking him up on the hour.

All in all he is doing good. He's eating and playing. It is nice being in the hospital but not on isolation.

Linda

Friday, May 5, 2006 2:07 PM CDT

CHANGE OF PLANS

I got a phone call from Dr Kramer at Sloan and she has FINALLY gotten the report from MUSC on the doses of the chemo they had given Chris. This is the information she requested from them 3 weeks ago. As it turns out they did not give Chris a high enough dose of chemo here and we cant start antibodies yet. We are going to have to re-do the last 2 rounds of chemo (topotecan/cytoxin).

Why does he need more chemo, he had cleans scans from last week? Even though there is no visible tumors on the scans we KNOW it is still there and will come back. The drs everywhere agreed on that. We are going to do antibodies to help his immune system kill these microscopic cancer cells and train his immune system to kill the nb in the future. If you read my entry that describes how antibodies work they are grown in mice and we hope his immune system gets the benefits before it realizes that it is a foreign antibody and rejects it... To ensure that they start antibodies within 8 weeks of finishing high-dose chemo, when his immune system is still down. The high dose chemo they gave him at MUSC wasnt as high as the high dose that NY needed (the local drs goofed) and basically the last 2 rounds of chemo we did need to be redone at a higher dose. ARGH!

What dose that mean for Chris? Well we are going to have to do more chemo. His body has just been through some major chemo and is still probably recovering from the radiation. And now we are going to do even stronger chemo. There is a possibility that he will need to have a stem cell rescue (where they give him back his stem cells after knocking his immune system down too low). Good thing we got those extra stem cells. In addition to the inconvenience of not being able to start antibodies, having to cancel flight reservations, extending his treatments we are adding to the total amount of chemo he has had and increase the risk of additional long term effects from the cumulative effect of the 2 rounds of chemo he shouldnt have gotten.

On the upside I will be home for Mothers Day with both of my children.

We start chemo Monday. It will be inpatient for 4 days. We will get to go home for the weekend and will go back in sometime that next week when he gets a fever (they are sure he will get a fever with this dose).

I am so irritated... He is such a trooper, doesnt complain and now we have to do another 8 weeks of chemo, which although we are used to chemo, theyre not pleasant.

Ive got to find something to do this weekend to get out of this mood...

Linda

Thursday, May 4, 2006 7:44 AM CDT

WOW. The week is almost over. Weve got our reservations all set for our trip to NY. This time we are flying with Corp Angels. It is an organization that works with Corporations to help people like us take advantage of an empty seat of a companys jets that happen to be flying anyway. There schedule is not as flexible as the Angel Flights (where the pilots sign up to fly us on the day we request), but it is on a larger plane and it will be a quicker flight. Both organizations are wonderful and I dont know how we would manage without them.

Last night I took the kids over to Beckys mothers house to go swimming. They had a BLAST. The water was still a little cold but they didnt care. This is the first time Chris has been in a pool in 2 years. While he had a broviac he couldnt go swimming and then he wasnt allowed to go in a pool for a year after transplant. The kids didnt want to get out. Afterwards we had pizza and Chris and Breanna both ate 3 (small) slices!!! Swimming works up an appetite. :) They had a great time playing with Jordan and Jarek and can't wait to go again.

Thanks for checking on us.

Linda

Tuesday, May 2, 2006 6:00 AM CDT

It sure is nice being home. I'm busy trying to get everything ready for our 2 week trip to New York. We will be leaving either Saturday or Sunday. I still haven't heard the final word from the rest of the scans last week so I'll need to call today. If everything is clean we are supposed to start GM shots tomorrow.

Thanks for checking on us. I'll try to get some new pics up later this week.

Linda

Sunday, April 30, 2006 1:15 PM CDT

Home Sweet Home

Thursday we had a good time. We walked all over the place. We didn't make it to FAO, but did go to the zoo. We found some place that served hamburgers (it seemed like everyone sold hotdogs) for Chris. There were some great playgrounds in central park. We will need to buy a sand bucket and shovel for next time. That night Chris had to take his final dose of SSKI (it protects the thyroid from the MIBG scan). He wanted to squeeze it into him mouse from the syringe. The little monster tricked me and sprayed the wall with it. He had to have this final dose and I didn't have any extra, so we had to walk up to the ER at the hospital at 8pm. I won't be so trusting of his 'good intentions' next time. It took us almost an hour and a half in the urgent care waiting to get the meds. Of course he fell asleep.

Friday we had to be up extra early for scans. We had to be there at 6:30 for his MRI (that hospital schedules things EARLY, even the ladies in the IV room where there at 6:30). The MRI went smoothly. It only took 30 mins. It usually takes at least 2 hours in SC to do it. They must have a more advanced machine. After the MRI he went down for his bone marrow aspirates. He got anesthesia for both the MRI and bone marrow. He was very sore after that. (They test the bone marrow in 4 places instead of the 2 at home). After all of that we met with the dr's. His scans from Weds came back NORMAL/CLEAR/GREAT!!!! That was the MIBG and the CT. We are still waiting on the MRI, bone marrow and urine but feel good that if the MIBG was clean the rest should be too. This means that we can go ahead with the less aggressive treatment. Yes even though his scans do not show any disease we know there is still some inside his body hiding in microscopic places waiting for a good chance to come back. The next step treatment wise (assuming the rest of the scans are good) is the antibody therapy. We will 'supercharge' his immune system starting on Wednesday with GMCSF to get all of his white cells active and hyper and then next Monday they will inject him with mouse neuroblastoma antibodies (they grow these antibodies in mice - go figure) over 90 mins M-F for 2 weeks. The biggest side effects are pain (a LOT of it) and allergic reaction (you are injecting something foreign into his body). To combat this they will premed him with benadryl and tylenol(they do the same thing before a blood transfusion) and morephine for the pain. They will do several rounds of this until his body starts making it's own neuroblastoma antibodies. This treatment will help kill any microscopic disease that is left in his body and help his body to fight off any disease that should ever try to come back in the future. We will be able to start the GMCSF at home but will need to travel back to NY next weekend for the daily injections starting next Monday. They say the first round of antibodies is the worst and to prepare yourself for it.

The kids are waking up from their naps - I'll write more later.

Linda

Thursday, April 27, 2006 8:39 AM CDT

Thursday

Things are going pretty good. Tuesday we met with another of the Neuroblastoma drs here Dr Kushner. He answered all of our questions and gave us some more info on antibodies. We got the MIBG injection and even met another family with staying at the Ronald in the waiting room. Tuesday night a local restaurant catered dinner and they had Bloomingdales out doing makeovers and face-painting for the kids. They also had goody bags for the adults and the kids. I got a sheet set from Bloomingdales they look great. Chris got a stuffed animal and ultra soft pillow. It was good to have the house dinner. I got to meet probably 5 other neuroblastoma parents and Chris had a great time running around with the other little kids.

Wednesday we spent the whole day at the hospital. He did the MIBG scan, CT scan, Echo, and 6 hour urine test. He did the MIBG and CT with anesthesia, but Im thinking next time we might try it without. At home it they do the MRI and CT together and it usually takes 4 hours. Here the CT only took 20 mins total (at home it takes 20 mins per part and he gets the chest, abdomen, pelvis, head, orbits and neck scanned). And the MIBG was a hour.

Today we have no appointments. We are going to go exploring! Someone at the hospital told me how to get to FAO swartz and make our way through Central Park to the Zoo. It should be fun just enjoying the city.

Tomorrow we have the MRIs and Bone marrow biopsies.

Linda

Tuesday, April 25, 2006 9:28 AM CDT

We made it to New York! The flights were an adventure. We had a smooth flight into Richmond, but there was a lot of turbulence on the second half of the flight. Chris didn't seem to notice but I was feeling very sick. I'm going to have to pick up some medicine for the flight home. I took pictures of the planes but don't have them with me. Even with the rough ride I'm very appreciative of the pilots at Angel Flights that donate their time and talent to help others.

My Aunt Sharon and Uncle Jimmy met us at the airport at made us some dinner (after my stomach settled). They also dropped us off at the Ronald McDonald House. THANK YOU!

This is our first time at the RMDH so we will be more prepared next time. I heard there was a playroom here and so I didn't bring many toys - it's being renovated. When we're here for 2 weeks I'll also bring more groceries - I bought a box of cereal and a quart of milk for $6. It could be worse I suppose.

Chris goes in to the dr's this afternoon for his MIBG injection.

Thanks for checking on us.

Linda

Saturday, April 22, 2006 9:31 PM CDT

Our flights are confirmed for Monday. We are leaving at 8:30 on a Cessna. That pilot will take us to Richmond VA where we will get on a Beech the rest of the way. It is so wonderful that these pilots not only donate there time but there plains (and GAS) as well. We won't know for sure until Monday whether they will have any room for us at the Ronald McDonald house but they said on Friday that it looks good. I've still got a million things to do before then.

The kids are doing good. Chris pulled out the rest of his hair (it was getting on his nerves apparently) and Breanna stuck corn up her nose tonight.... Kids...

I took them to see Ice Age 2 this afternoon. The kids LOVED it.

Have a good weekend!

Linda

Wednesday, April 19, 2006 12:51 AM CDT

We got to collect cells again yesterday. The final count came in at about 5 million for the 2 days combined. His CD34 count was 16 on Tuesday (was only 7 on Monday) but his f monocytes was lower and those are apparently the ones we wanted to collect. So we had more cells floating in the blood, but a smaller ere the kind we needed. We still did pretty good and feel pretty good about the cells we did get. They gave him blood and platelets into the late hours of the night and let us go home at about 2 am. They would have let us spend the night and discharge us after the doctors did their rounds (noon?) but I needed to get some hours in at work.

I was thinking this weekend and Sunday marked our 2 year anniversary with Neuroblastoma. Life before cancer seems like such a distant memory. This is a journey that no one should have to take, much less a little child.

Please keep Chris and I in your prayers. We will be traveling to NY next week for scans. Also please pray that we will get great news on the scans.

Linda

Tuesday, April 18, 2006 8:06 AM CDT

I was a little brief last night it was a LONG day. We didnt get started with the harvesting until 5pm and it takes 5 hours. I wanted to tell you some more about it. They use this big machine that looks almost like a paint mixer with wires everywhere. They separate his blood, remove the stem cells and give his blood back. For his size/weight he has 1.1 liters of blood in his body and the machine processed 7 liters of blood (roughly it filtered his blood through 7 times). His CD34 was a 7 yesterday and usually you can collect 10% of the cd34 count approximately ž of a million cells. Their goal for this harvest was 5 million cells but they will be happy with whatever they get. If his CD34 count is higher today (it can get into the 50s) we will harvest again, and if it is lower they will remove the line and let us go. Even if they harvest again today we might get out this afternoon.

Chris did really good with the harvesting. The line in his neck is in a difficult position and he had to lay mostly still or it would pinch the line and stop the flow. He did good at holding still for 5 hours! The process of filtering your blood wears you out and he fell asleep with out any problem after they were done.

Breanna is doing good. She was a little bit upset that I wasnt home with her last night. She is doing pretty good though. With any luck Chris and I will be home later this afternoon.

Hope everyone had a great Easter. We went to church in the morning and over to my brothers house in the afternoon. Chris brought his new t-ball set that the easter bunny brought him. He played with it most of the afternoon. Breanna had a great time running around and playing in the dirt. She was filthy by the time we left. The Easter bunny brought her a carebear movie and book.

Monday, April 17, 2006 10:32 PM CDT

We had a good weekend. Chris got out of the hospital last Thursday. They left the IV in his neck to give his cells one last chance to mobilize. The drs werent very optimistic that anything would happen. BUT today when we went back to clinic his CD34(marker that determines how mobilized his cells are) was high enough! We harvested stem cells! Tomorrow we will see how it looks and maybe harvest some more. We got some but not as many as we were hoping for.

Linda

Friday, April 14, 2006 7:17 AM CDT

HOME

It always feel so good to go home after being in the hospital for a few days. This time we were there for 7 days. And he was stuck in his room the whole time (aside from the fieldtrip to get the line placed in his neck). By about Tuesday he started acting up and having tantrums b/c he was so bored in his room and ready to go ANYWHERE else. He is now over the cdiff infection but he was still testing positive for rotavirus as of Tuesday (the only way they can test for this is with stool samples and we didnt send any after Tuesday). Hopefully he is almost done with that too. He is feeling much better and got increasingly difficult to keep entertained. He did discover that coffee stirrers are very useful with fruit loops. You can use the stirrer to drink the milk and to make ka bobs by looping them onto the stirrer.

He got some platelets yesterday before they let us go. His white count is almost 2000(normal is 5K-10K), anc is 500(normal is 2K-4K). Red blood was almost normal (10.5-normal is 11). His counts are on the way up. But unfortunately his cd34 marker is not doing anything. It has been 0 all week. It measures how many of his stem cells are in the blood stream. We need it to be at least 7 before they can harvest. After 3 days of regular gshots and 7 days of high dose g and gm shots it hasnt changed at all. They sent us home with the line still in his neck and we are going to continue giving him the 2 shots a day and see what it is on Monday. It is not very likely that it will have changed by then, but its worth a shot. We do have some frozen stem cells from 2 years ago when they harvested, just not as many as wed like.

We had a great afternoon at home. Chris took a nap. I played outside with Breanna. We had dinner and then went out to ride bikes. It amazes me how a couple hours after getting out of the hospital he was speeding down the street on his bike. It is so nice having everyone in their own beds. Breanna slept much better last night. Hope everyone has a good weekend and a happy Easter!

Linda

Tuesday, April 11, 2006 6:46 AM CDT

Were still at the hospital. They decided that because of Chris low counts they would keep him until after his counts recover and we harvest. He had surgery yesterday, or as I called it a fieldtrip out of the room. Hes been stuck in his room because of the cdiff/rotavirus thing. He was happy to get milk medicine (the propofol they use to put him to sleep) and see the anesthesia team (Ms Jill and Dr Frank the guy that bought him balloons during radiation). Surgery went smoothly. Hes got it in the other side of his neck this time and they said he would be uncomfortable with it. Hes got morphined ordered for the pain. He was in a much better mood yesterday (maybe because of the morphine?) but he was eating quite a bit more. He had a few outbreaks of fussing that he wanted something that I didnt have (a gravy biscuit at 3 pm thanks Becky for filling that request). Yesterdays labs were better as far as hydration goes. His potassium was on the high side of normal 5.1. His white count was 460 (up from Sunday), platelets 76, red blood 11.3. His ANC was 0 though. His white count was up though so Im hoping that his anc will be up this morning. Yesterdays counts being that low make it unlikely that we will be able to harvest today. For some good news his blood cultures from Saturday night are negative so far for infection. And his poop samples from Sunday are negative for cdiff and rotavirus. I feel sorry for the guys in pathology every time they send a sample off. The dr said that if he has 2 come back negative for cdiff (that are 24 hours apart) they will consider him over that. For the rotavirus they wait until he doesnt have diahrea to consider him recovered. Of course hes still on strong antibiotics as a precaution so its not really fair to him. His girlfriend is back in for chemo. He cant leave the room to talk with her or go to the playroom with her but every time she walks by the room they wave.

I talked with the team at Sloan yesterday. They want us up there as soon as we can to get scans done. I told them there was no way we could be there before mid next week. I wasnt expecting to go up until the end of the month, but am glad to get scans done and see what progress weve made.

Happy harvesting thoughts.

Linda

Sunday, April 9, 2006 7:30 AM CDT

I think I jinxed myself yesterday. Chris dad came up to the hospital to sit with him while I ran some errands. It started pouring. So much for my beautiful day. On top of that it took them forever to get started with everything. When I got back up to the hospital at 6 we still had 6 hours of infusions to go. It didnt get any better when he had a reaction to the IVIG. He has had it once before and didnt have a problem with it then. Last night he all of a sudden started shaking. I called the nurse and they went into a flurry of motion. I heard her shout to the doctor that he was modeling. I later found out that means a red pin-prick rash on his arms. He also had a fever that went from normal one minute to 100.8 30 mins later. 100.8 doesnt seem high in the normal world but in the cancer world when you have a port-a-cath tunneled into the vein that leads to the heart it could indicate a very serious illness. They gave him benadryl and hydrocortisone 5 mins later when it hadnt stopped yet. It stopped shaking after about 15 minutes. The dr ordered blood cultures and started him on an antibiotic (Rosefin). They held off on anything for 2 hours and started the IVIG back up about 9 at a slower rate. The thought are that he probably just had a reaction to the IVIG. He presented with text-book reactions (modeling, shaking, chills, fever). The chills, shaking, fever and modeling could also be a sign of septic shock. But because he responded so well to the benadryl and hydrocortisone we dont think it is the shock.

When they started it back up he had no problem with it. They still had his blood and platelets to go. Both of those can sometimes cause a reaction also. Hes never had a reaction to those but to be on the safe side they spread out the infusions and had them going slower. They finished the platelets by 3 and started the blood at 7. Theyve got it going over 4 hours. When the night shift nurse was leaving she told me that his labs were back and his potassium is still low 2.8 and that they would be giving him another bolus of potassium. UGH that one takes 4 hours too. AND he had one yesterday. Yesterday his potassium was 2.3. Normal is 3.5. Never a dull moment. So Im not sure if we are going to get out today or not. Assuming nothing else goes wrong it would have us out of here by about 4 or 5 pm. And we come back in the morning for line placement surgery.

Here's hoping we get out early to at least get dinner at home and to sleep in our own beds tonight.

Linda

Saturday, April 8, 2006 12:27 AM CDT

Well I had expected to update yesterday but when we went into clinic yesterday they decided to keep him overnight. Of course of all the days I forget to bring our overnight bag (just incase) it's the night we need it. Chris went in to clinic yesterday so they could observe him after they gave him his first ever GMCSF shot. He wasn't feeling really well yesterday, sleepy, nausea and a little diahrea. When we got to clinic he looked pitiful! His labs showed that he was severely dehydrated. His electrolytes were out of balance and his glucose was dangerously low. On the plus side his anc wasn't as bad as I thought it would be 378. Platelets wer 28 and red blood was 9.5. They gave him a bolus (a bag that they pump into him fast) of fluids and admitted him to get fluids overnight.

This morning he has perked up and is eating a little bit again. His labs show that he is not dehydrated anymore but that his potassium is low. They are going to give him a bolus of potassium, a blood transfusion (red blood was lower today), platelets (his platelets have to be 50 for mondays surgery), AND IVIG (immuno globulin). The IVIG is because they are thinking with the low counts his C diff is hanging around. IVIG is antibodies they give throught the IV. It should help him recover from the infection. All in all we are looking at about 8-10 hours of infusions! So much for getting out sometime today. They said he can go home afterwards as long as he doesn't spike a fever or start looking bad with the nausea and diahrea. So hopefully we will get out just before dark - fingers crossed.

It's always an adventure. Hope everyone else is enjoying the beautiful weekend. With any luck we will get to play outside tomorrow before having to come in on Monday for the surgery.

Linda

Wednesday, April 5, 2006 6:40 AM CDT

We are now experiencing the full effects of the chemo. Chris is very lethargic with short bursts of energy. He has almost zero appetite. Yesterday for his afternoon snack he had 4 bites of fruit loops and 1 bite of pear and for dinner he had a half a piece of toast with butter. He is still having some nausea problems that I think are the result of the chemo not the rotovirus. His bottom has been much better and I think we are about done with the rotovirus and Cdiff(though we'll take antibiotics for another 7 days). We started his daily G-shots yesterday morning. He is doing better with them. Still doesn't like them, but this morning it was almost like he's feeling too weak to argue about getting them too much. He wimpers but I've gotten better at giving them and we get them over with faster. I can tell his counts are going down - he just looks like he's feeling weak. He does have his moments and still smiles and laughs and plays but needs to take a rest after 10 mins. Last time his anc just barely dropped below 500 (normal being 2000). This time it was 420 before we even left the hospital. This round is going to hit him harder.

On Friday we start the second growth stimulator shot (GMCSF). We've got to take him in to clinic so they can watch him for an hour after he gets it because he's never had that one before. He'll probably need platelets by then and maybe blood. It's strange how we take it for granted that when he needs blood products they will produce a bag of blood to give to him. But for everytime he needs it someone had to have donated. He's probably had over 3 dozen blood and platelet transfusions. Thank you to everyone that's ever donated blood not knowing who it was going to. It allows people like Chris to survive the harsh side effects of chemo. Without the life-saving gift there is no way people could endure round after round of chemo. Thank You.

Linda

Monday, April 3, 2006 2:08 PM CDT

Monday April 3, 2006

We got home from the hospital today. Turns out Chris tested positive for C Dif AND Rotovirus. The dr was surprised. She had said he probably didnt have it b/c if he did he would have more diarrhea. They are both very contagious but only through contact with his poo. Proper handwashing should prevent it spreading to the rest of the family. At the hospital they would have kept him on restriction in his room. The C Dif should only be contagious until we get 24 hours of antibiotics in him, and the rotovirus maybe another day or two. All in all he is doing pretty good. He was whiny this weekend but he was put on restriction Saturday morning and that was no fun for him. He likes to be able to talk to people and stroll around the nurses station. His counts have already started to drop. His white count is 900 and anc was 420. ANC is normally 2000 and White count 4000. His platelets were still 85. With his counts dropping this fast it is a definite possibility that he might get a fever and have to go back in.

As it is we are supposed to go back in next Monday morning to put the pheresis line (IV) in his neck again. They arent going to make us be there overnight this time, but they will need home health to come out and check his platelets on Sunday. They wont do surgery unless his platelets are at least 50. If it is obvious that his counts are nowhere near ready to recover we could delay surgery. After the line is put in if his counts arent coming in fast they will let us go home with the line in his neck, and we would go into clinic every morning to check labs and see how it is going.

Happy Monday,

Linda

Sunday, April 2, 2006 7:54 AM CDT

Chris is on isolation. They think he might have rotovirus. He had a stomach thing going into the hospital but it came and went. The drs said that rotovirus is going around the hospital and they didn't think what he had was that b/c it would cause him to be violently ill and not come and go. He still isn't violently ill but he's had a little bit more stomach issues. I understand why they have to put him on isolation but it's no fun being stuck in his room all day. He likes to cruise the halls and talk to everyone.

Chris has a crush on one of the little girls at the hospital. He met Kathy in clinic 2 weeks ago and was talking about her for a couple days. Then when we went in there on Thursday she was there too. She's 4 and has the same thing he does. She's very shy. The other day Chris was trying to talk to her, asking how she was doing. Then he he had the cutest line "Do you like my wheels?" referring to the wheels on his IV pole. It was too funny.

Thanks for checking on us.

Linda

Friday, March 31, 2006 4:32 AM CST

We're in the hospital. His counts were good enough to start the chemo yesterday. He still isn't eating like normal, only a few bites here and there, but he is not as lethargic as he was on Wednesday. Hopefully chemo will go good and he can get over whatever virus it is before his counts bottom out.

When I got home from the hospital last night (his dad is staying with him at night) I couldn't help but smile when I went to bed. On Wednesday the kids both drew me a picture and decided to hang them in my room next to my bed. :) It's still strang going to bed without both of my children under the same roof as me, but it put a smile on my face.

Wednesday, March 29, 2006 12:43 AM CST

Things here are still a go for tomorrow. Chris got sick again this morning. I still am not sure what the problem is but he was feeling better a couple hours later. It's wierd for him to be vomitting. He didn't get sick with the last 2 rounds of chemo but now when he shouldn't be experiencing any side effects he's gotten sick a couple times this week. I hope it goes away and it's nothing.

I'm starting to get anxious to get these next scans done. He hasn't had full scans since the beginning of December, so we are now due for scans but won't have them for another month. We expect everything to be clean by then, but it is still enough to make me anxious.

The kids have loved playing on their new playset. They are so cute together. Chris is such the 'big brother'. He will slide down the slide and then stand at the bottom and tell her to "Come here sweety. I will catch you". And then after she gets to the bottom he gives her a big hug. :)

Linda

Monday, March 27, 2006 6:53 AM CST

Sorry no update. Weve been busy. We were supposed to start chemo on Thursday but Chris platelets were 34 (they have to be at least 75 to start chemo). They were going to have us come in to clinic on Monday and recheck them but it was obvious that they wouldnt be good enough today either. Were going to wait until Thursday and go in. That should give them enough time to recover. Good thing because he had a little bloody nose on Sunday so his platelets are not going up fast.

Were going to try and harvest the stem cells at MUSC again. This time we are going to do the 2 different growth stimulating shots (GCSF and GMCSF) and hopefully we will be able to get his cells to mobilize. If that doesnt work (fingers crossed that it will) we could try to give him just shots (no chemo) to boost his cells and mobilize them (probably do this at Sloan).

After this round of chemo well be heading to NYC (Sloan) for scans. They will probably do the full set of scans (MIBG, CT, MRI, bone scan, bone marrow, etc). Well come home for a week or two and then go back up to start antibodies. If I understand it correctly you do antibodies for 2 weeks and then you go home for 3 weeks and then the cycle repeats. I think after the 4th cycle you go 2 weeks and then off for 8 weeks. Thats not straight from the dr but from someone else thats done it so I might be wrong. Either way its going to be a lot of travel back and forth (about 8 trips before the end of the year). While he is on the antibodies we would be out-patient, hopefully staying at the Ronald McDonald house in NYC. He would go in to clinic in the morning to get the antibodies and then go back to the house to rest. Antibodies cause nerve pain while they are being administered (IV) so they will give him some heavy duty pain meds. They have been doing this for over 20 years though so they know how to manage it very well. For more info on the antibodies http://www.mskcc.org/mskcc/html/3215.cfm#261329.

Were looking into organizations that offer free flights for medical treatment and the possibility of using donated frequent flier miles.

The kids are doing ok. Chris ran a low grade fever yesterday and threw up twice. Breanna was very concerned. His white count (fights infection) was normal last Wednesday so hes not more likely than normal to get sick, hopefully its just a little bug and clears up soon. We bought a play set for the yard last weekend and got it set up on Saturday (THANK YOU STEVE, TOM, ANDREA and DAD). It took the guys about 5 hours to put it together but the kids LOVED it.

Thanks for checking in on us. Please say a prayer that Chris isnt getting sick and that we will be able to successfully harvest the stem cells after this next round of chemo.

Linda

Sunday, March 19, 2006 8:21 PM CST

Harvesting the stem cells was a big flop. On Friday his CD34 marker (tells how much his cells are in the blood stream instead of the bone marrow) was still a 1. It needed to be at least a 7. And it hadn't changed in 3 days despite the fact that his white count has recovered. :(

They sent us home on Friday. It became apparent that his CD34 was not going to go up and we were wasting our time. They have a couple of other options.
1) We can do a higher dose of chemo next time and follow up with GCSF and GMCSF.
2) We can try and harvest it from the bone marrow. This would be done in the OR under full sedation. They would do something similar to a bone marrow biopsy. Using a needle to extract the bone marrow from his hip bones. This would require about 50 punctures on each hip bone. He would loose a good bit of blood and would need a transfusion. This sounds horrible. I can't fathom how he would be able to walk after this.
3) The third option was really just a farce. The dr here said that if we don't like the other options or aren't successful with them we should be happy knowing that we have 3 million cells frozen from 2 years ago. Though the experts at Sloan didn't think that was enough considering the nature of the disease.

So on Monday I think I'll call Sloan. They mentioned that if the guys here had trouble harvesting to let them know (it is harder to harvest now than it was 2 years ago b/c he's had 9 cycles of chemo and a stem cell transplant since than). I'm not sure if they have any other ideas of things to try or not. I'd REALLY like to avoid harvesting it from his bone marrow.

He's doing pretty good. As soon as we got home from the hospital he wanted to ride his bike. He still has bad bruises on his arms, legs and neck (from the IV they put in it) but those are b/c of his low platelets. Hopefully by the end of the week his platelets will have recovered (they are the last thing to recover after chemo). Of course we are supposed to start chemo on Thursday unless they delay it b/c of his platelets.

Breanna is doing all right. She's having a real hard time adjusting to the constant change. She's acting like she feels very insecure. It always takes a couple days after Chris gets back from the hospital for her to settle down (when its just about time for him to be admitted).

Happy thoughts. Things will all work out I'm sure.

Linda

Friday, March 17, 2006 5:03 AM CST

Harvesting stem cells is not going so good. They put the line in on Weds but his counts haven't come up yet. His white count is up a little (b/c of the high dose g shot) but the CD34 marker that they look at to see how much his cells are mobilized (in the blood stream) has been a 1. It needs to be at least a 7. Hopefully todays labs will reveal a better number. If it doesn't come up in the next 2 days it means its not going to come up. They've got other alternative ways of collecting the cells but none of them sound pleasant.

Linda

Tuesday, March 14, 2006 7:02 AM CST

Chris really is a brat at times. On Sunday I was cooking dinner and the kids were sitting at the counter about to help me make brownies. They had toys strewn across the floor in the kitchen and dining room. I asked Chris if he would pick them up so I didnt trip on them. His response How bout you step over them. Hmmm. And then yesterday at the hospital, he took a nap while he was getting his blood products. When he woke up he was CRANKY. As we are walking to the car he starts telling me that he wants a hamburger. I tell him that dinner is already cooking at home. He starts crying and tells me Im really disappointed with you. Brat. By the time we got home he was in a much better mood. Yes I got him a hamburger and that helped.

The drs think his counts are starting to come up. He will be admitted tonight and stay in a couple days until theyve harvested the stem cells. He will have surgery tomorrow to put in a central line in his neck. A central line is just like an IV but in goes in a big vein or artery. They will do this in the OR under full sedation. Depending on his CD34 marker (apparently it measures how many stem cells are swimming in his blood instead of in his bones) we might get to harvest tomorrow. If not well do it Thursday, or Friday or however long it takes for his counts to come up and harvest the predetermined amount. Normally when your body makes new stem cells it makes them in the bone marrow in your bones. In order to harvest them we need them to get out of his bones and mobilize. To do this we give his a super dose of the GCSF (shot given after chemo to make your body make more white cells). The super dose causes a huge production of stem cells and there are so many they are all in the bloodstream. To harvest them they hook him up to an aphaeresis machine (just like to donate plasma or platelets). They take the blood out from 1 IV and filter it through a big machine to get the stemcells and put it back in the other IV. The process has improved since the last time we did this almost 2 years ago. Now they do not need to sedate him while they are harvesting (it takes a couple hours). He will not need to be in the PICU. And they are putting the line in his neck instead of his groin. The benefit there is that he can still play/walk when hes not hooked up to the machine. A big factor if this ends up taking more than 1 day.

Please keep us in your thoughts and prayers in the next couple days.

Linda

Monday, March 13, 2006 2:44 PM CST

We made it through the weekend without getting a fever. We had to come back into clinic today and check his counts again. His plts surprised me. They were 10. They were 13 on Saturday and he got 1/2 unit transfusion Sat afternoon. So today they decided to give him a whole unit. His hemoglobin was 8.0 and he's been acting a little more tired so they decided to give him those today.

Linda

Saturday, March 11, 2006 2:49 PM CST

Time for a fill up.

The home health nurse came out today to check Chris' counts. His plts were 13, hemoglobin 8.0. They told us to bring him in for some plts. The guy on call says that his hemoglobin is good and there is no need to transfuse yet. I guess different dr's have different opinions. He said he wouldn't transfuse until it got closer to 7.... ok. As long as Chris doesn't spike a fever while he's there he gets to come home tonight.

Linda

Friday, March 10, 2006 7:48 AM CST

OK so were still hanging in there. But it seems more like walking a tightrope trying to stay out of the hospital. His counts were down yesterday but not enough for a transfusion. Platelets were 30 (they were 80 on Monday, and they transfuse at 20), Hemoglobin was 8.8 (It was 9 on Monday and they transfuse if its below 8.0), ANC was 777 and white count was 106 (Very low). As the ANC gets closer to 500 we are in serious danger of getting an infection and having to be admitted to the hospital for IV antibiotics. With a count that low you dont even have to be exposed to germs the normal good germs on your body can make you sick.

So now we wait. Chris mood is best described as volatile. The slightest things set him off. Hes not feeling good. Hopefully this will pass quickly and he will be recovering before too long.

Linda

Thursday, March 9, 2006 8:16 AM CST

Things are going pretty good. We got out of the hospital about 2pm Monday. Chris goes back to clinic today. Hes been a little slower this week. He also isnt eating 2 breakfasts, 2 lunches and 2 dinners like he was while he was in the hospital. He eats a little here and there but no full meal at the same time. Potty training is going good. Weve not pushed him with all the stress in the past few months. I told him when uses the potty all the time that he can have a BIG BOY PARTY. He is excited about that.

Hes still got Wild Man Hair

Hope everyone is doing alright. Ill update after his apt.

Linda

Monday, March 6, 2006 7:36 AM CST

Chemo day 5

Weve been here since Thursday. Chemos going good. As Chris tells every dr or nurse that asks him how hes doing Im doing fine. My port is good. He says it in this voice that just makes him sound sad. Like leave me alone already. Hes been really good though. Hes eating great. He loves going to the playroom. Breanna came up and played with him a little on Saturday and Sunday. She was so happy to see him Saturday. His hair is starting to rub off on his neckline. We go home this afternoon. Well have to start the shots again Im sure hes not going to like that, but this time it will be for at least 10 days, last time it was only 4. We will be admitted next Tuesday to harvest his stem cells assuming that he doesnt get sick before then. Alright Ive got to go play ~

Linda

Wednesday, March 1, 2006 8:49 AM CST

9 SQUARE FEET
No I'm not talking about the size of our penthouse suite at the all-inclusive Resort and Day Spa better known as Medical University of South Carolina. That's probably at least 30 square feet before you factor out the size of the bed and medical equipment. :)

9 square feet is the distance 1 regular large egg can cover when squeezed in the palm of a 2 year old. That 2 year old can then jump 12 inches out of the chair she is sitting in when she realizes what's happened. Raw egg works like a slip and slide when spread across a freshly washed floor. That same two year old will get egg everywhere from her ankles to her ears before she can regain her balance. All while screaming at the top of her lungs. All this takes only about 30 seconds. It will take the 2 year olds mommy about twice as long to stop laughing before mommy can help clean her up. I think Breanna has a new found respect for raw eggs. :)

Chris went to the doctor on Monday. His counts look good. He had a hearing test and PASSED. Good to know that 2 months of ear infections haven't caused any permanent damage. Tomorrow morning we are checking into the above mentioned 'resort' for 5 days of chemo. Visitors are welcome. Usually getting the chemo isn't the hard part, that comes 10 days later when he starts to feel bad.

Thanks everyone for checkin in on us. Keep us in your thoughts and prayers that this chemo is effective at removing every trace of this horrible disease in his little body.

Linda

Thursday, February 23, 2006 11:25 AM CST

Well we are now DONE with radiation! Yesterday Chris got a bunch of toys from all the nurses, receptionists, radiation techs, recovery room people, etc that he saw everyday for radiation. Ive tried to build him up and get him excited about being done with it b/c he likes going and was usually disappointed on Saturdays when he didnt get to go to his doctors. It must have worked b/c he didnt get upset this morning. Last night someone from the church made us dinner it was wonderful and great to have a nice dinner on our special occasion. Thank You! It is hard sometimes to cook dinner after being tied up at the hospital most of the day.

Chris is doing good. The last chemo didnt hit him too bad. You can see the chemo circles under his eyes in the picture above. Kind of like allergic shiners. But theyre starting to go away.

We get to relax and enjoy a week off. Chris has to go in on Monday for a hearing test and a clinic visit. And then on Thursday he will be admitted for the topotecan/cytoxin chemo combo. This will be high-dose chemo and we can expect it to hit him hard.

Thank you for all the thoughts and prayers.

Linda

Friday, February 17, 2006 6:35 PM CST

It's finally Friday! Of course I had to go and volunteer to go into work tomorrow. But I will get to sleep in an extra hour and a half! 3 weeks of radiation down and only 3 more days to go. They aren't closed for the holiday (Presidents Day) on Monday so we will be finished on Wednesday. Chris went to clinic on Wednesday and his counts were so good that they told us to stop the shots! His ANC was 6K. Normal is between 2-4K. ANC is his absolute neutrophil count. It's what the dr's look at to determine his germ fighting ability. They also look at his white blood cell count. That was also very high. They don't think that his counts have hit rock bottom yet - so they are still going down, but they don't want his count to be that much over the normal level. They had us come back in today to check them and his ANC was 1900. Big drop from Wednesday. Some of that is b/c of going off the shots you expect counts to go down and some is the effects of the chemo. It's still a good ANC. Plenty of germ fighting ability. We'll go back to clinic again on Monday and see how his counts look then. By then they should have hit as low as they are going to go.

They've decided we are going to harvest stem cells after the next round of chemo which should start March 3rd.

We've had more ear drama. Chris went to the ENT for a follow up on Thursday. He had something blood clot/wax blocking the new tube. The ENT wasn't able to get it out. Today while Chris was asleep for radiation the ENT came back and removed the dried blood. It was stuck to the tube though so he lost the brand new tube. His ear looked a little red and irritated. They weren't sure if it's b/c of the radiation or an ear infection so we are going to start an antibiotic and do 2 more weeks of drops! Sigh. I sure hope they can fix those ears soon. I don't want him to have any hearing loss from having an ear infection for so long. We go for a hearing test in 2 weeks so that will be nice.

Alright hope everyone has a good weekend!

Linda

Tuesday, February 14, 2006 7:37 AM CST

Mondays are such LONG days. I have to get up at 4 to get the kids out the door. Chris has to be at the hospital at 6:30 and Ive got to drop of Breanna at the baby sitters. Mondays they access his port (IV under the skin in his chest) and leave it in thru Friday. Im still tired today. But we only have 1 more early Monday morning to go and then hes done with radiation! Next Wednesday should be his last day of Radiation.

Chris is doing good. He managed to go all week without any problems with the chemo. His appetite is still good. We had to start giving him GCSF shots again. You give these after chemo to help his immune system recover. He was not happy with that. He is very big on asking Why recently. Ive found the only way to get him to stop asking Why is to give him enough information to bore him. Heres a conversation I had with him Saturday night after he got his shot:
Chris: I dont like shots at bedtime.
Me: I know but you wouldnt like them any better in the morning would you?
Chris: I dont want to get shots.
Me: I dont want to give you shots. But you have to have them.
Chris: Why?
M: Because your doctor said you need them
C: Why?
M: Something to do with your immune system
C: Why?
M: Well You had chemo last week and a lot of the white cells in your body got lost. The shots help your bone marrow grow more white cells.
C: Why? (his eyes are big)
M: The white cells are important because they protect your body from germs. The shots help your body make more white cells so that you dont get sick.
C: Oh.

About 30 mins later as I was tucking him in he decided his teddy bear needed a shot too. He was giving him a shot and he told his teddy The shots will help your white cells fight germs. So you dont get sick.

He understands so much more than he did the first time around with this stuff. And hes not satisfied with the explanation we used to give his almost 2 year old self then. Ill have to look and see if they have any picture books for explaining this kinda stuff to kids his age.

Breanna is doing good. She still has a runny nose but her cough is gone. She can be so sweet some times and such a monster others. Her new phrase to say is Im so happy to see you. She used it the other day to butter up my Dad after her nap. She came out from her nap sat down beside him on the couch, put her arm around him and told him Im so happy to see you. Youre so pretty. Can we go to McDonalds and get a big boy hamburger? Id blame this on her Uncle Stephen but he was sick last weekend and didnt see them.

All right Ive got to get to work. Chris is doing radiation every morning this week. On Wed he goes to clinic for an exam and to see how his counts are doing. Thursday he goes to the ENT to see how his ear looks. We dont expect his counts to drop off as sharp as they used to with the high-dose chemo and were hoping that he will not need to be hospitalized for any infections while his counts are a little low. Thank you for all the thoughts and prayers. Dont forget to sign the guestbook. I love reading the messages and seeing who stopped by.

Linda

Wednesday, February 8, 2006 8:37 AM CST

8 days of radiation down 10 to go. This week has been much better than last. Chris' cold is just about gone and he has a great appetite. He still isn't allowed to eat before radiation (because of the sedation) but as soon as he wakes up he is ready for breakfast. We stop at the cafeteria on the way to clinic and get "5 eggs and 1 bacon". Actually it's just scrambled eggs and bacon but he always tells us he wants 5 eggs... ;) He was a goof ball this morning. We get in the elevator on the walk to radiation and he tells me "Wow! An elevator. I've never seen one of these before." He tone was as if he was serious.

After radiation his anestesiologist left specific directions for them in the PACU (recovery room) to page him when he wakes up. Dr Frank came back and pushed Chris down to the gift shop to get a balloon! Chris loves it! I'm glad we've got him for a dr, Chris loves coming to see them in radiation every morning.

So far no side effects of the chemo. They give him something for naseau before we start and it must be working - so far no trouble. The diahrea hasn't been an issue yet either. We're starting to wonder if he'll be in the small % of kids that get constipation with it instead. It's weird to have a drug that can cause either severe diahrea or constipation.

All right we're waiting on his chemo to come up now....

Linda

Monday, February 6, 2006 11:39 AM CST

We're in clinic right now getting our chemo... We've been here since 6:30 this morning and they just started it. We only have to do 1 hr of fluids before and after the 1 hr of chemo. Today it took a little longer because they had to wait on his labs to get back before the pharmacy would even start making the chemo... :( But hopefully we should be outta here by 2 pm. So far no side effects of the chemo. Apparently the worst thing to watch out for is severe diahrea. We've got to stop at the pharmacy and pick up some meds to use if he starts to have any trouble.

Radiation is still going good. We finished the 6th day of it today. Only 12 more to go. He didn't have much of an appetite last week. It picked up on the weekend. I'm not sure if it's because of his cold/congestion or the radiation. But with starting chemo today we expect that his appetite to be sluggish.

He's eating barbecue chips right now and watching a video.

It's amazing how well his scar looks from his surgery 6 weeks ago. We'll be here all week getting chemo (out-patient). Keep a happy thought for us that this chemo won't have real bad side effects and will do the work needed to rid his body of the cancer cells.

Oh did I mention Chris turned off my alarm clock last night so I was 45 mins late waking up! Little stinker!!

Linda

Thursday, February 2, 2006 11:46 AM CST

Were doing all right. We have been very busy. We took the train home from NY/NJ Sat afternoon and didnt get in until 5am on Sunday. I had to go on travel with work on Mon-Weds so I was busy unpacking, washing clothes, grocery shopping and repacking. Josh was on duty to take Chris to radiation this week. It has gone well so far. He did end up in the ER Tuesday night for a fever and ugly cough. They did a chest x-ray which came back clear. They gave him some IV rocephin and sent him home for the night. They did draw blood cultures but apparently nothing has grown yet or they would have called us back. They couldnt have been to concerned or they would have admitted him. On Wednesday he was feeling better and playing again. But Weds Breanna was acting sick. She went to the dr and was given an antibiotic and a cough medicine. Hopefully she will feel better with that. Chris went to the ENT today after radiation. His ear is still a little off. We are to continue the drops and come back in 2 weeks. If it still looks bad they will talk about doing a CT of the ear.

That's all for now....

Linda

Friday, January 27, 2006 10:10 AM CST

The dr's appointment went GREAT. Because we did not do radiation to the face before and that was the only place he relapsed we have a chance for a cure. That's right I said a cure. She explained that if it had relapsed elsewhere in his body or even back in his abdomen we would have resistant neuroblastoma, but that since it was a local recurrance where we didn't do radiation - it's probably because he didn't get enough therapy there to begin with.

For treatment she wants us to go ahead with the radiation in SC. And have them do 1 cycle of irinotecan(chemo drug). Apparently that is a chemo drug that works really well with radiation and will give you better results. After he recovers from the chemo we need to harvest more stem cells. We have 3 million frozen but that isn't really a lot. A lot of the therapy for relapse uses stem cells to help them recover faster and to be able to give them higher doses of the drugs. Of course we hope that we will never need these but it's better to have them and not need them than to need them and not have them.

After the radiation/chemo combo with the stem cell harvest she wants us to do 2 cycles of high dose topotecan/ cyclophosphamide. And then after that we would talk about some antibodies. For anyone that doesn't know antibodies, I believe, is about trying to train your immune system to recognize and attack the cancer cells. They get these antibodies from mice - it's not the same thing as a vaccine though. I'm sure I will find out more when that time comes.

The good part is that we should be able to do everything up to the antibody part local. I'm glad we got the second opinion. She put a lot more hope into the picture. Thanks for all the thoughts and prayers. We should be starting radiation on Monday. I'm hoping we'll start chemo the following monday.

Linda

Wednesday, January 25, 2006 7:47 PM CST

We made it here alright! We ran into a 3 hour delay on the train ride up, but had a good trip otherwise. By the time we got on the train at 11pm last night Chris fell right to sleep. This morning when we got up we went to the food car and Chris was so fascinated by the view he wouldn't eat. I had to put a forkful of eggs in front of his nose for him to eat them. We're staying in northern NJ and we might get snow tonight! That would be pretty cool! Thanks for all the thoughts and prayers.

Linda

Tuesday, January 24, 2006 11:54 AM CST

We've almost ready to go. We leave tonight for NY. We're taking the train and staying with my grandmother in upstate NJ. I am excited and and a little intimidated by the 'big city' but I think everything will work out. It will be so nice to get to meet the Dr's up there and see what treatment options they have. I'll try to update from there....

Linda

Friday, January 20, 2006 2:38 PM CST

Yesterday's appointments went well. At radiation they made a face mask to be used during treatments to keep his face in the same position. They also did a CT scan of the head to be used for plotting out the treatments.

After radiation we had a couple hours break before going to ENT. We had to reschedule our ENT appointment because of the CT so we ended up having to go to a different office. Chris' ENT runs around between 3 offices during the week and was at a different office in the afternoon than in the morning. It turns out it was a pediatricians office that he has some space in. I don't think we will be coming to that office again. In the waiting room was a girl with chicken pox! Of course that is a very bad thing to be around when you're going through chemo. They got Chris back immediately and the Dr said that his ear looks a little better but still not 100%. He wants us to continue drops b/c he doesn't want the blood in the ear to clot and ruin the tube. He gets to go back in 2 weeks.

Next stop was the dentist, but since we had an hour to wait we stopped at Baskins Robbins for "The ice cream you drink with a straw" aka a milkshake. I found a very nice Train cake that they sell. Its a roll ice cream cake with cookies put on for wheels and face and a chimney. I think I'm going to have to get this kind of cake for my birthday in 2 weeks. :)

The dentist appointment went well. His teeth look great. I asked what we can do to help protect them with chemo and he mentioned having him rinse his mouth after taking medicine. A lot of the medicine is mixed with a sweet tasting syrup to hide the taste. He wants us to come back in 3 months just to follow-up and monitor to make sure he's not having a problem caused by the radiation or chemo.

Linda

Thursday, January 19, 2006 10:31 AM CST

And now we pick up the pace.

Sloan called yesterday to schedule his appointment. It's next Thursday. It should just be a quick 1 day appointment. They should know by then what they are recommending treatment wise. I'm expecting that we'll still do the radiation here first.

Linda

Wednesday, January 18, 2006 6:34 AM CST

I got a hold of the Dr at Sloan finally. She said they are not done reviewing his chart but that the first thing to do is radiation. We can do that here or there. We chose here. We should hear back from her later this week with the treatment options they want to do after radiation.

Tomorrow will be a busy day. Before they do radiation they will need to do a CT scan of his head and make a mask to ensure he sits in the same position each time. We do that tomorrow at 7:30. We have the follow-up with the ENT at 9:20 and a dentist apt at 2:40...

At least we finally have a start to our plan. The kids are being demanding. They both want all of my attention. Chris insists every morning that I need to call his dr because he has an ear infection... I don't think it still hurts but that maybe he just likes the attention. Since the beginning of December he has had:
2 surgeries with anesthesia
4 days of scans with anesthesia
1 bone marrow biopsy with anesthesia
14 different doctors appointments

Sigh - no wonder we feel so tired and like we're running around all the time. The anestesia averages out to once a week for the last 7 weeks and the drs apts avg out to twice a week.

Tonight after work I'll have to find something special to do with them individually to hopefully help with their attitudes. They are normally such great kids but they're acting out for attention.

Linda

Tuesday, January 17, 2006 5:05 AM CST

Well I wish no news was good news, but that's probably not the case. I still haven't heard back from Sloan. Today I'm going to have to make a nuicance of myself and see how I can get the Dr on the phone.

The weekend was pretty good. Breanna woke up screaming last night and screamed for a solid hour. I finally got out of her that her ear hurts... Maybe that'll explain why she's bumped her head so many times in the last week.

Chris is doing good. We're starting to see maybe symptoms, maybe not. It could be explained as typical 3 year old. He zones out. Kinda stares into space and doesn't hear when we're talking to him... He's also being a little more agressive which could be from pain he can't identify or just from the major change in life routine....

I'm going to say it again. I hope TODAY brings answers.

Linda

Thursday, January 12, 2006

I'm so ready for the weekend! Yesterdays appointment with the ENT went well. The left ear looks great. The right ear still looks a little nasty (I believe the word he used was 'irritated'). We're to continue the drops in the right ear for another week and come back next Thursday. Tomorrow we follow-up with the neurosurgeon. I wonder how they'll respond to the 'bone dust' question. Not that it matters. If that's the biggest complication he's got from the surgery we're doing great. :)

Chris is doing great. He's had a tummy ache for a day or two, or in his words "I have a bowl full of tummy ache". I think it's constipation. He's such a wacky kid. Last week when we got to the ENT's office he told me "I don't want to go to this dr. I want to go to the dr with the playroom." And then when the dr was vacuuming his ear he cried "I want to go to my other doctor". He did really good with it though and got to play with the chair when the dr was done. It was one of those fancy dentist like chairs that go up and down and recline.

I heard back from Sloan and my insurance has been approved. I can schedule my appointment now. Of course I've got to wait to hear from the Dr to see when we should schedule this and whether they'll need to do any additional tests. I left a msg for them that we are in limbo. Our hospital here is waiting on us to tell them to start treating him and we are waiting on Sloan.... Just a happy little 'My childs life is in yours hands so please don't delay' type of message. :)

I hope tomorrow brings answers.

Linda

Tuesday, January 10, 2006

Yesterday was interesting. We went to clinic first thing in the morning. All they did was blood work and tell us to come back in 2 weeks.... I was expecting a chance to talk with the dr's again. I guess I'll need to call them. Then we went to radiation and had the consultation with them. They were very nice told me they weren't going to start on anything until I told them too. We're waiting to hear back from Sloan. I need to hear something this week b/c it will take radiation about 5 days to plot out his treatment.

The Dr confirmed that it would be low-dose radiation b/c NB responds so well to it. The 'critical structures' in the area that they will be careful about are the right eye (too much radiation can make the eye go blind), pituitary gland (can be corrected with hormonal supplements), and ear (deafness). The dr told me that he was looking forward to the challenge (I'm not sure if this statement is reasuring or not...) and that his team would labor over the treatment plan to determine the best approach with least side-effects. He also indicated that we would sit down and do a long informed-consent (where they tell me the risks). I talked to him for about 45 mins and got a lot of information. I asked him how close this relapse spot was to the original tumor in Chris' cheekbone. He told me that it was very close. I asked him if, in his opinion, it would have made a difference if we would have radiated the face last time around. He told me he thought we should have done radiation to the face last time. He questioned the oncologist on it and the deciding factor was that the treatment protocol Chris was on said that there was no need to do radiation on the metastasized(where it spread to) site if the tumor was not visible on scans after chemo. Of course hind-sight is 20/20. I just hope that this information is getting past back to COG (the people that are in charge of the protocol) b/c the radiation dr said it seemed 'commonsense' to him to radiate the face tumor.

All in all I feel very lucky. Chris is doing great. He still has NO SYMPTOMS! On Chris' chart in radiation they had a polaroid of him they took on his first visit to them. He was probably about 5 weeks out from stem cell transplant and he looked SCARY. I don't think I have any pictures from that soon after transplant and maybe that's the reason why. He was very very pale and SOOOO scrawny. Skin and bones. His eyes were sunken with those dark circles under them from the chemo. And of course bald as can be (no eyelashes even). I'm so not ready to go back down that road. sigh

We have NO dr's appointments today! It seems like we've had a dr's appointment almost everyday for the last month.

Thanks for checking on us. Don't forget to sign the guestbook and let us know you were here.

Linda

Sunday, January 8, 2006 12:00 AM CST

Friday's ear procedure went smoothly. It took about 30 mins. The ENT was able to clean out all the nasty stuff in their put new tubes in and put some meds in the middle ear. He said that Chris would feel better probably immediately after getting all the nasty stuff out of his ear and he was right. Chris hasn't complained about his ears hurting him since then!

Yesterday we got surprising news. My brother Danny, who is stationed in Afghanistan with the Army, called from the airport. He's home for 2 weeks! We went and picked him up. The kids had a great time watching the planes takeoff and land while waiting for his flight to get in. And then last night we had a big cookout dinner with the whole family. This makes 4 weeks in a row we've had a big dinner/celebration. The kids are loving it. Chris thinks the best party is just to have the family over. At his birthday party in August he was excited just knowing the family was coming, and then when they had presents it was a bonus.

We've got a clinic appointment on Monday and an appointment with Radiation to get the specifics on radiating that area. We're waiting to hear back from Chop and Sloan. I spoke with them at Sloan and they did recieve his records but they aparently recieved his WHOLE record instead of just the parts they asked for.... This will delay them getting back to me.

Thanks for all the prayers and thoughts. We're hanging in here. Chris still has NO symptoms which makes it harder to believe that we're going to have to embark on this 'journey' but I'd rather him be doing so well for now.

Linda

Thursday, January 5, 2006 2:59 PM CST

Update
We met with the ENT this morning. He tried to vacuum out the crud in his ear to have a better look at it. Chris wasn't very cooperative. He was able to get a little bit cleaned out and it appears the bleeding is coming from the middle ear - through the tube. His thoughts are that the surgery might have left some bone dust in his ear that has caused this infection or maybe where they were working on the skull it pushed some bacteria into the ear canal.... I don't really know. He said on a 'regular' kid he would just have us do the drops for another 2 weeks and see if it clears up, but considering that we will be starting chemo or radiation soon he wants to clear this up now. Otherwise it could drag on for a long time. Tomorrow they are going to do an out-patient procedure to clear all the gook (fancy medical term) out of his ear. They are going to inject some medicine directly into the middle ear and replace his 20 mos old tubes with some brand new ones. Apparently old tubes can grow bacteria too. Hmmmm. They should of looked into that months ago when I asked if it was a problem he still had tubes..... sigh. O well. We were able to schedule it for first thing in the morning tomorrow (which is great - at least they're not dragging this out for a week). It should be a quick, easy procedure. From what I understand there will be a bit of pain for him (I've never had my ear vacuumed but I've heard it's very unpleasant). But we've got some tylenol with codeine to relieve any of that.

I'm hoping to hear from Sloan and CHOP tomorrow regarding Chris' scans and possible treatment options. They should have received them from fedex at 10 this morning.

Thanks for checking up on us!

Linda

Wednesday, January 4, 2006 6:57 AM CST

The bleeding ear saga continues. Chris' right ear has been bleeding for a week now. We went to the ER last Weds night b/c of it and were told that he had an outer ear infection. They put him on antibiotics and sent us home. On Sunday it was still bleeding so we went back. They called the neurosurgeon down and ruled out that it could be related to surgery. The dr was the same we had on Wed and said the ear looked the same - no better after 4 days of antibiotics. They had an ENT dr come down and they changed his antibiotics and told us to follow up with the ENT office this week. Chris' ear is STILL bleeding and causing him pain. I don't think it's really any better. :-( He goes to the pediatrician today to get the referrals we need (insurance changed 1st of the year) and to the ENT tomorrow.

MUSC is sending a copy of his records to Sloan and CHOP. Hopefully we'll hear back soon....

Linda

Monday, January 2, 2006 12:37 AM CST

Happy New Year. Last week was so busy! We did the MIBG scan on Thurs and Friday. Thursday they injected him and Friday they scan him under sedation (the scan takes about an hour and he has to lie perfectly still). We had a little excitement over the scan. After 2 hours he still wasnt done with it. I asked what was going on and they said the dr had them change the settings on the machine and do it again. About an hour later they told me that they were going to take him for an MRI. By now I was thinking that they must have found something. They wouldn't rescan and then order an MRI unless they found something. Long story short he was under sedation for 5 hours. The MIBG showed a hot spot in the head where the tumor that we just removed was. The MRI didn't really clarify much b/c it just showed swelling and fluid (blood) but looked pretty much like you would expect it to look this soon after surgery. The Dr's opinion is that their is probably microscopic tumor that the surgeon wasn't able to see. On the plus side it tells us that his tumor is MIBG positive and that might open some doors treatment wise for him. The dr's are copying his scans to send to Sloan Kettering and CHOP. Hopefully we will be able to hear back from them this week and begin treatment. It seems like its been so long since we found out and that we haven't really done anything but truthfully he's got to heal from the surgery before they start anything.

Breanna turns 2 tomorrow. We had cake and ice cream on Saturday. She had a great time! In the picture above Grandpa thought he'd give them the entire gallon of ice cream to see what they did with it!

Linda

Sunday, January 1, 2006 7:55 PM CST

We're alive. Tired and exhausted but alive. Will write more tomorrow and I've got some new pictures.

Linda

Thursday, December 29, 2005 7:44 AM CST

Yesterdays update was heavy so I thought I post something more cheerful. I cant change Chriss diagnosis but I am in control of how I respond to it. Heres some morning funnies.

Chris has been quite interesting the last few days. Testing the limits and giving you a million dollar smile when you catch him doing something hes not supposed to. The other day Breanna was getting yelled at for trying to climb out of the high-chair. My wise-beyond-his-years son reminded us that we need to Use your inside-voice! :) LOL. He got me on that one.

As I was putting him to bed the other night he asks me Mom, will you be my swimming buddy? huh? Sure thing honey. ?!? Where did that one come from?

Yesterday when Chris woke up from his nap he had blood in his right ear (same side we had surgery). I called the neurosurgeons to see if we needed to freak out and they said it was probably best if they took a look at it. So we went to the ER. Luckily brain surgery and bleeding ears gives you the Fast Pass through the ER and we had a room within 5 mins of arriving there. The neurosurgeon and the ER Attending Dr looked in both his ears and it was decided he just had an ear infection. This interesting part is that the left ear is a middle ear infection (probably the same infection we had 2 weeks ago that must not have cleared up) and the right ear is an outer ear infection also known as swimmers ear. Ponder that for a moment. My boy asks me to be his swimming buddy Tuesday night and Wednesday afternoon has to go to the dr for swimmers ear. The doc asked me if he has been swimming. Not to my knowledge. He hasnt even got his head wet in the bathtub since surgery. Kids sure are interesting.

Linda

Wednesday, December 28, 2005 1:29 PM CST

Im having trouble believing that Chris is sick. He doesnt look sick ok aside from the big old scar on the side of his face, but that it looking pretty good too. He doesnt act sick. Hes running around playing like I would expect a 3 year old to. He doesnt feel sick. How can he be so sick?

Drs are still maintaining the line that there is no cure for relapsed neuroblastoma. No cure. No one survives it. At best you look at enjoying your child for an additional 8 years. BAM Chris will never get to be a teenager? I cant believe it. I wont believe it. Denial sets in. There HAS to be a cure. THERE HAS to be A CURE. there has to be a cure.. How can they tell me its good news that he didnt relapse but just in 1 place if it doesnt change his prognosis. I dont like this crap. I want to be done with this bad dream. He doesnt look sick, he doesnt act sick, he doesnt feel sick. How can he be sick.

.
.
.
.
.
.

Reality is back. Theres things that need to be done. I dont want to burn any bridges at MUSC because they have the benefit of being close. I do want to get a second and third and maybe fourth opinion on possible treatment options. Its hard to get the information I need. Im playing phone tag with the drs. I dont know how long we have to make a decision (MUSC wants to start treatment by the end of next week) with only a week to get the answers I need AND make a decision I dont know how Im going to do it.

Linda

Sunday, December 25, 2005 1:26 PM CST

Merry Christmas! We did our big Christmas celebration last week but we're still having a family get together tonight. It was nice to not be running around like crazy trying to finish shopping and wrapping presents (we did have to do that last weekend - but the crowds were less). Chris is doing great. He complains a little that his ear hurts but I think it's just the stitches are starting to heal and itch. All he's taken for pain meds since Thursday afternoon has been motrin. He's a little tired and I can tell he gets worn out after playing for a little bit but I think it's just that his body is trying to heal. His appetite has been great and he's loved being home with all of his new toys. Hope everyone is having a great day!

Linda

Friday, December 23, 2005 6:28 PM CST

HOME! I didn't believe it when the dr casually mentioned it yesterday. I still didn't believe when the nurse told me this morning that she had our discharge papers, but at about 9 am this morning we were sent home!! Breanna was so excited to see him. I'll update more tomorrow but for now I've got to go tuck in my sweeties.

Linda

Thursday, December 22, 2005 8:09 PM CST

Recovery seems to be going good. Chris went in for an MRI this morning to make sure there was no swelling or bleeding. Everything looked fine. When they removed the tumor they packed the hole with something to keep it from bleeding. It should dissolve in a few days. Because of this they weren't able to tell if there was any tumor cells still there. Chris is doing great. He got moved up to a real room and as soon as we get in the room he asks "Does this place have a playroom or something?" Too funny. Of course he remembers the playroom but he was being cute. We might even get to go home on Saturday. We'll see how things are going. Thanks for checking up on us and for all the prayers. His fast recovery is unbelievable. He even puts the phone up to that side of his head to talk on it.... It amazes me. If you want to see a picture from today click on the photos link. He doesn't look that bad but I didn't want to put it on the front page for anyone that doesn't like looking at stitches.

Love ya,

Linda

Wednesday, December 21, 2005 7:31 PM CST

We made it through surgery!! Chris actually looks better than I expected even. The dr said they removed all the tumor they could find. It was a little bigger than what it was on the MRI scan 10 days ago but that was to be expected. They made a maybe 5 inch incision starting beside the middle of his right ear and going up 2/3 of the way to the top of his head. There is a LOT of swelling right now and it actually looks similar to the way it did when he was first diagnosed (he had a lump in the same spot). The swelling should go down soon though. Dr said to expect him to have a black eye by tomorrow b/c of what they were doing. He doesn't seem to be in any pain, they've got him on morphine. He's got that drugged look but he does respond to you and acknowledge you. He has been drinking and eating a little this afternoon. They've got him in the Pediatric Cardiology ICU (PCICU) because they didn't have room up in the PICU (Pediatric ICU). We expect that tomorrow after the dr's do their rounds we will get moved upstairs to 7B. That will be nice. Right now we have a stall in the ICU, we're borrowing a TV on a cart but there's no comfy chairs and we're not allowed to sleep in their. Hopefully this will only be for 1 night. THANK YOU For all the prayers. I really feel that he did so well b/c of them. We still have a long road ahead of us (they will still need to do some type of chemo/radiation/etc) but at least we are past this first hurdle.

THANKYOU,

We love you all,

Linda

Monday, December 19, 2005 12:07 AM CST

Good Morning. We go in for surgery first thing Weds morning. Surgery is scheduled for 7:30 am. The neurosurgeon anticipates it to take 3-4 hours with 3-5 days inpatient to recover. The first night theyll keep him in the PICU (pediatric ICU). One parent will be able to spend the night in the room with him but I believe they kick you out from 7-8 pm and 7-8 am for shift changes. Hes allowed to have 2 visitors at a time while in the PICU. After that first night we expect they will let him go to a regular room sometime on Thursday (probably not until after the dr have rounded maybe lunchtime). He should be on 7B the same as before. After were on 7B he can have regular visitors no real restrictions. The neurosurgeon said the biggest risks of a craniotomy (brain surgery) is blood loss and infection. There are nerve cells around the tumor so it is also possible there could be some nerve damage. The nerves that control the right side of the face, feeling, taste, expression are the ones that there might be an issue with. All that considered the benefits outweigh the risks and we have to go thru with this. The neurosurgeon said that they will drill into the skull about an inch to the northeast of the top of his right ear. They will drill in about 2 inches and remove a piece of skull/bone. They will go under the brain and thru minimal amount of brain tissue to remove the tumor. After theyre done they will put the skull bone back in and stitch/staple it all together. Dr. Tuite doesnt routinely shave the heads for this so he might not loose his hair yet.

By rescheduling the surgery it gives us a little more time as a family, but it also gives me more time to start to worry. Im going to be a basket case by Weds morning. Sigh.

On to happy things. Christmas was WONDERFUL! We had the whole family come over in the morning to open presents. We had company dropping in throughout the day, even had a photographer come get some pics of the kids playing. :-) I think everyone had a great time. Check out the new pics.

Thanks for thinking about us and checking in on us. Please leave us a message in the guestbook we love to see them.

Linda

Saturday, December 17, 2005 7:16 AM CST

This probably won't be long but I wanted to tell you the latest news. Surgery is rescheduled for Weds b/c of Chris' ear infection. The chance of complications is still low but if there were to be a complication it would be BAD. This messes up our MIBG scan on Weds so we will probably have to wait until the following week to do that. I spoke with Dr Maris at CHOP and he said we should go ahead with the surgery and after surgery they'll need to do scans again and then decide from there where to go treatment wise. It's possible that he might not qualify for a clinical trial if he doesn't have any disease on the scans. But just b/c it's not showing up on the scans we would know there's probably microscopic cancer cells that are alive and waiting to wreak havoc. He said we would still need to treat (and I whole heartedly agree) b/c of the seriousness of relapse. We've got a busy busy day getting ready for Christmas so I'll have to write more later.

It still doesn't feel real.

Linda

Friday, December 16, 2005 4:18 AM CST

CLEAN MARROW!!! YIPEE! This means surgery is a go for Monday. We meet with the neurosurgeon at 11:30 today to get all the details. Surgery is at 7:30 am on Monday with an MRI at 6:30. It's strange that under normal circumstances I would be upset at the thought of doing brain surgery but now we're excited. The problem would have been that if there was marrow involvement we would have started with chemo first, and if the chemo drugs they chose were the wrong one the tumor on the brain would have had a chance to continue to grow !?! So all that considered we're glad they can do surgery.

I've decided that we HAVE to go elsewhere for treatment. MUSC has told us that there is things they can do for Chris but he WILL relapse again and it's just a matter of time before it's fatal. I think we have more hope with a clinical trial. Not only for Chris but at the end of the day if he is not being treated on a trial/protocol then the data will not be collected and reported back to benefit other children. We're no closer to a cure if he's not on a trial. And not only do I want a cure for him but I want it for all the children that go through this.

So I called around yesterday to a few hopsitals. I've always heard great things about Sloan Kettering and CHOP so I called them. I've also heard that St Judes is a great place (though never relating to NB) so I called them and I called Duke b/c they're another big hospital but closer. St. Judes was disappointing. Maybe it just me but I couldn't find any directory of physician on their website to look up the oncology dr's. The way they treat people is different. It's free (thats cool) if you ins doesn't cover it and they put everyone on a clinical trial. Down side, if they don't have a clinical trial going on or if they're not accepting patients on that clinical trial (sometimes hospitals stop adding patients to a trial when they need to compile the data) then they can't help you. They refused to talk to me on the phone. Said that they ONLY talk to the physician. Im sorry but I know Chris patient history. I can repeat it without any problem. I didn't get a warm fuzzy feeling that they are leaders in NB. I'm sure they are good at other things but not NB.

I left a msg at the other 3 and CHOP was the only one to call me back the same day. Dr Maris was in meetings all day but he had his NP call me to get all the information. I gave her the patient history and she was impressed that I knew my medical terminology. I stressed to her that I want hope. She was glad we called and wants to set up an apt to meet with the dr. I told her we would love to meet him ASAP. Im still not sure how we're going to get there but I'm sure we'll figure it out. He needs this.

All right. I'll update later tonight/this afternoon after we meet with the surgeon. Thanks for checking in on us and for thinking of us. Please sign the guestbook so we know you were here and that you care.

Linda

Thursday, December 15, 2005 9:06 AM CST

UPDATE

We did the bone marrow test yesterday. The Neurosurgeon has reviewed the scans and surgery is do-able. They will not do surgery now if there is bone marrow involvement. I just spoke with them in clinic and the first look at the marrow is CLEAN!!!!! We have to wait until the other comes back (the take a bone sliver and some bone marrow fluid). I dont remember which but one came back good and were waiting on the other. Maybe well know something this afternoon if not tomorrow a.m. Neurosurgeon has cleared his schedule for Monday morning and if we hear good news this afternoon (clean marrow) we will do surgery to remove the tumor then. Good thing Rudolf is making a special trip down south on Sunday. I will need to negotiate with the drs to see if we can come in early Monday morning rather than do an over-nighter on Sunday. We live close and I dont mind waking up early.

Fingers crossed

Linda

Wednesday, December 14, 2005 5:17 AM CST

For anyone that didnt read Mondays journal Chris has relapsed. Routine scans detected a small spot on his brain. We go in this morning to do a bone marrow aspirate to check if the disease is in his marrow. If we have marrow involvement there is no need to risk a surgery thinking we are removing all the tumor. The peds neurosurgeon is reviewing the case and will let us know if the spot is operable. Dr. K said there is no need to risk permanent damage to the brain if this isn't an easy (relatively speaking - this is brain surgery) surgery.

MUSC is recommending that after surgery or if we don't have surgery to next follow up with radiation and chemo.

How about some good news? The radiation last time didn't have a bad effect on Chris. He was a little more sleepy. Also this dose of chemo they would start with (Cytoxin and Topotecan) is supposed to be easier on the kids. We could do this out-patient at clinic. 5 days a week, and go home each night. Dr K said the counts would drop but that the kids don't always get infections with the low counts with this like he did with the chemo he got first time around. Assuming he responds to the chemo they would do 6-8 months of chemo.

Bad news - They haven't found a cure YET for relapsed NB. Dr K indicated that it is possible to achieve NED but that they can almost guarantee that he will relapse again and then it will be harder to get NED and expect another relapse and so on. The longest survivor she knows of is 8 years after relapse. I cant believe this is it yet and give up hope. In order to have statistics you have to compile information from several years back. So we don't know that the treatment that they are giving to kids that relapsed 6 months ago is not going to be the cure. Or that they won't find the cure in the next 6 months. It seems like we're going to try out best to treat aggressively and keep him alive long enough to see a cure.

As long as I just look at the information and the facts I can think calmly and I can handle this. As soon as I remember the fact that this is MY SON and not someone elses my heart breaks again. I don't know, it's like if I can distance myself from the situation it's still a sad story but as soon as you think about the fact that the little boy sitting in my lap needs brain surgery it's overwhelming. We had just gotten used to the new normal life after cancer.

Just like with the fear of relapse I look at him now and wonder if the way he is acting is normal or caused by the disease. He's got a cold and says his ear hurts. Probably just fluid in them.

We've pulled some strings and we're going to have a birthday party for baby Jesus this Sunday with Santa in on it too. We want him to be able to play with his toys before he has to start the 'hospital tours' again. We're also not sure when they would schedule surgery and don't want to be in-patient on Christmas day. I'm glad he's too young to realize.

Thank you everyone that has started praying for us. I'm going to be that nagging child repeatedly asking God for a cure.

Linda

Monday, December 12, 2005 9:31 PM CST

BAD NEWS

I got ahold of the dr on my way home from work. There is a spot on his MRI. Its in the cranium(brain) but not in the brain tissue whatever that means. It didn't show up on his bonescan so we think that this is a new growth and still in the soft tissue - not bone yet. They scheduled an MIBG for next Weds -the soonest the can get it. Aparently the injection for the MIBG is only made in one place (I thought she said CT?) and they ship it out for hospitals to get on weds. Theres no way he can get a dose for this weds so that means we will have to wait a week. They will also do a bone marrow test at that time. We meet the dr tomorrow to see the scan and talk about options. If his MIBG comes back positive he would be eligible for MIBG treatment at CHOP(philly). They'll probably be some chemo they can try, maybe radiation - just a guess.

How are we doing? Chris is great. Hes got the sniffles but I do too. He's still running around like a wonderful happy care-free 3 year old. Breanna is doing great too. She has been using the big-girl potty for a week now! I'm in shock. I was angry and wanted to deny it even before I got off the phone. I wanted to ask the dr are you sure you have got the right parent?? But a part of me always knew this was a very real possibility of NB. He had all the 'bad' markers nmyc amp, index of 1, unfavorable histology.... The numbness is good. I can function. I only tear up and cry a little bit. Hopefully the numbness can last at least until we have a plan.

I need your prayers. Please pray for us. I don't know how we are going to get through this or what the next few months will bring but knowing that you care and are thinking of us will help. Please sign the guestbook and tell us you care. I know you don't know what to say. I wouldn't if I was on the other side of this either.

I'll update tomorrow after we talk to the dr's.

Love,

Linda

*******************UPDATE***********************
After meeting with the drs today we have a semi-plan. The first thing we want to do is surgery to remove the tumor. It is small - a little smaller than a marble - and not IN the brain but kinda sitting ON it... If the neurosurgeon doesn't think that he can remove the tumor without damaging the surrounding parts of the brain than we won't do the surgery. After surgery or if we don't do surgery they want to do radiation to zap the spot and make sure its dead. Then we look at chemo options. We've got to wait to see how his scan goes next week to see if he qualifies for the CHOP study. I'll post more in the morning. I'm exhausted. Thank you all for the kind word, thoughts and prayers.

Oh forgot to mention we pulled some strings with Santa and arranged for him to come a little early. It's a possibility that we will be in-patient over Christmas (recovering from surgery) so we want to make sure that we get to celebrate baby Jesus' birthday right. I'm sure he won't mind that it's not the right day. :) Chris has been talking for a week and a half now about making plans for Jesus' birthday so we'll make sure to have some cake and icecream.

Linda

Monday, December 12, 2005 7:51 AM CST

No test results yet. I am waiting impatiently. I called Fri afternoon to see if they could look and see if the results were in yet and they were all in a board meeting. UGH. I HATE waiting. I guess if they had bad news they would have called me by now...... fingers still crossed for CLEAN scans.

Linda

UPDATE 3:30 pm

STILL NO NEWS. I've called them twice. This morning the results weren't in yet. And this afternoon I just left a msg..... UGH I HATE WAITING.....

Monday, December 5, 2005 7:38 AM CST

December already?!? We had a good weekend. Took the kids to the Christmas parade on Sunday. They had a great time. Breanna slept thru half of it even with the marching bands walking right past us. Chris favorite part was the Piggly Wiggly pig. We also got the kids pics with Santa Clauss. Saturday I had to take Breanna to the dr. She got new shoes last week and wore them maybe once for 5 hours. She got a big blister on the bottom of her foot. It was bright red with red streaks shooting across her foot. The dr confirmed what I thought infected and gave her an antibiotic. She said that if it didnt look better by Monday to come back in. This morning it looks bigger than it did on Saturday but less all-around red. It does however have a purple ring around the white blister-lump. Hmmmmm I think Ill call the drs office and see what they think. She hasnt worn shoes all weekend. It looks awfully painful. She limps so as to not put pressure on that side of her foot. After the $$ of the co-pay at the dr office, the prescription and the shoes that she now cant wear it would have been cheaper to just get them fitted at the StrideRite. Sigh

Thursday I took Bree to her first dentist apt. They said everything looks great. Her teeth arent growing in in the order they typically do. On the bottom she has her 2 middle teeth and then shes missing the other 2 flat teeth and the 2 canines and she has the molars. On the top shes just missing the canines. He expects that they will grow in by the next time we come in. If not theyll take Xrays. Chris was disappointed that he didnt get to go to the dentist and told me that his teeth are broken when I was on my way out the door. Hes not used to having to share the medical attention. I guess its good that after all hes been through hes not afraid of the dr office.

Scans on Friday. I called and talked to a dr at Duke about the MIBG scan thing. He told me that the COG study Chris is on does not require the MIBG scan, but that most major hospitals do it anyways. Apparently not all hospitals have MIBG scanners but the ones that do typically continue to follow-up with the MIBG. One of their oncologist is the chair of the COG study and I left a message for her to call back. Im not sure if MUSC will be willing to just do the scan if I request it or if Id have to take him out of state to get it done. That would be a hassle b/c it is a 2-day scan, injection on the first day and scan on the second. But we would manage Im sure.

Have a great week.

Linda

Monday, November 28, 2005 8:20 AM CST

Hope everyone had a great Thanksgiving. We had a good LONG weekend. Thanksgiving dinner was at my Moms house. Chris was so excited to have Turkey and pumpkin pie. He told NeNe that This is a GREAT Party! What a character. Josh rented Polar Express and the kids LOVED it. Whats not to love, theres a train and Santa Clause. Friday night I went out and got Breanna a toddler bed. She had been climbing out of her crib and I gave up on getting her to sleep in it so she was sleeping on the crib mattress on the floor in Chriss room (she didnt want to be alone). But on the plus side now I have a spare room that I can use for all their toys! Back to the toddler bed its a Nemo toddler bed. She LOVES it. She doesnt put up nearly the fight to go to bed now. On Saturday we went to the Happy Days Holiday Party. Chris painted an ornament and made a marshmallow Snowman. Breanna decorated a cookie. They had a catered dinner and Santa showed up to give out presents. The kids had a great time. There was also a dj and Breanna was dancing and bouncing along with the music the whole time. Sunday we went to church and Chris was too cute. We were sitting in the quiet room and he looks at me and tells me Mommy youre in charge. Just like Jesus is in charge. OK

Next Friday we go in for scans. They say we only have to do MRI, CT and bone scan this time. No more bone marrow or MIBG b/c hes had clean bone marrow and MIBG since he stopped treatment. They also said there was no point in doing the urine test b/c his was negative at diagnosis. Im not sure how comfortable I feel that we are not doing bone marrow and MIBG but the dr explained that this is the standard treatment for NB. I asked for an explanation of what MIBG is good for showing and she said that it can differentiate between active (live) cancer cells and scar tissue. Apparently sometimes you can have a spot show up on a CT and it only be scar tissue from dead cancer cells. Im not sure if thats the full story or the dumbed-down version for parents. Im not sure that I 100% buy that. But the point is that you dont want to subject him to the painful bone marrow he already has so many dimples in his hips from it and extra radiation of repeated MIBG if it is not needed. They said of course we would do everything again if he were to complain of bone pain. Sigh. I hadnt thought of it before writing this down but I might get a second opinion just to be sure I get the same story. Duke isnt that far away and I can maybe call and see how they follow-up someone in his situation.

If you dont mind wed love any happy thoughts, prayers, NED dances you can send our way for the scans we do have in less than 2 weeks.

Thanks and have a great week.

Linda

Friday, November 18, 2005 2:10 PM CST

Here's the new pic of the kids as promised. I took Chris to clinic on Tuesday. Everything looks great. He got 6 shots !!! Poor thing had trouble walking to the car. They told me to keep tylenol in him for the first 48 hours and the next day he was doing much better. What a trooper! Of course I had to get him a reward for being so good so we picked up Madagascar on the way home. He's seen it at least 3 times already~

Linda

Monday, November 14, 2005 7:04 AM CST

Hmmm. I thought I had updated again since last time. O well guess this one will be long :-)

On the 29th we took the kids to the Happy Days Halloween Party. The kids had a great time. They had an air castle, air slide, face painting, carnival games, pumpkin carving, fun house, hay rides, horse rides and more. Chris rode the horse all by himself. Quite the accomplishment for a 3 year old! Breanna had a great time picking out the perfect pumpkin. They got tons of toys and candy. We took the kids out trick-or-treating for Halloween in my moms neighborhood. Chris was a Super Ereo and Breanna was a Carebear. They were both very good about holding hands while walking in the street. The kids werent expecting candy and were surprised at the first house. Breanna didnt want to walk anymore b/c she was staring at her lollipop!

On Sat. the 5th I took the kids to a birthday party at the House of Bounce. Its a building full of aircastles and airslides and mazes. It was an evening party so Breanna got wore out halfway thru, but Chris did great. He was running around with all the older kids and climbing here and there to get up the slides (some of them were a little challenging even for me). He looked 100oy. Breanna is still singing Happy Birthday to Jordan. And Chris wants to know when can we go back to Jordans party. :)

I went to Atlanta for vacation early last week. Actually it was a work conference but it was nice to be able to eat a meal without having to fetch and carry for the kids. AND I was able to read a book while I was gone! The kids did good. Chris made me promise to bring him a surprise AND a present and then he was ok with me being gone. Breanna just loved having all of Daddys attention. I ended up finding the perfect surprise for Chris a Thomas the tank engine snowglobe from Barnes and Noble. He LOVED it. It came free with 2 kids Christmas books (bonus-they were perfect for Breanna). I got back Weds night and was exhausted. So very glad that Friday was a holiday. The kids were ok Weds night when I got back and Thursday, but by Friday... The kids must have had some kinda stomach virus b/c they were a little possessed. Breanna in particular. She screamed at me and sent me to time out. She cried until she was gagging. Nothing would console her. She seemed exhausted too. Luckily some Tylenol and a nap helped some. By Sunday afternoon she was a completely different child. All smiles and giggles again. Whew.

Chris goes back to clinic tomorrow to have his port flushed and for an exam. He will also start the re-vaccination process. That should be loads of fun probably 4 shots but at least were finally to the point that hes recovered enough to do that. You gotta find the bright side to shots right? Weve got scans scheduled for the 9th of December.

All right one last quick story. The other night Chris goes to the potty and leaves his pants in there. He asks me to go get them for him and I tell him to do it. He asks me Will you please be my special helper mommy? LOL Hes using my own lines against me!!

Hope everyone has a great week! Please say a prayer and keep a happy thought for everyone that is still going through tough times.

Linda

Monday, October 24, 2005 7:14 AM CDT

This morning as we are leaving to go to work/daycare it was raining. I carry Breanna out to the car, open Chris' door so he can climb in and he stands there trying to take off his rain jacket(doesn't want to wear it in the car). He's still fighting with it after I've buckled Breanna in. I help him get it off and put him in the car and buckle him in. Get in the car and he starts screaming "Ow Ow Ow It hurts it hurts" I ask him what's wrong and then it hits me. My legs are itching! I start slapping them. I take off my shoes and I've got ants all over me! I get Chris out of the car and run him back in the house. We do the crazy ants in my pants dance as we try to shuck off our shoes, socks and pants - they's ants all over them. He must have been standing in an ant pile while he was taking off his jacket and I stood in it to put him in the car. Luckily Breana was fine b/c I carried her out to the car and put her in. What a start to the day. At least it was a little funny. :) Poor Breanna thought we'd all lost our minds :)

Happy Monday everyone!

Linda

Monday, October 24, 2005 7:14 AM CDT

Wednesday, October 19, 2005 9:11 AM CDT

We had another good weekend. Josh had to work ALL weekend like 25 hours combined on Sat and Sun - so it was just me and the kids. Our church had their Octoberfest on Saturday so we checked that out. Chris picked up a train for $1 at the white elephant sale and he picked out 2 cars to share with Breanna. Chris helped himself to a tray of brownies I hadnt planned on buying any but he touched them so I had to (sneaky little boy). We also got a Blues clues movie and some books for Breanna. We stopped by my Moms house on the way home and the kids played for a while. Chris was informed that he has a room at her house. We went home and took a nap. After naps we went to the Volvo dealership for a test drive and some lemonade. They were donating $20 for every test drive to Ped Cancer research. We swung by and saw Josh at work and headed home just in time to eat dinner and put the kids to bed. Sunday we went over to see Uncle Stephen and the kids had a great time playing with the dog and running around with their cousin Becky. Chris was told that he also has a room at Uncle Stephens house. I told him he can come pick him up on Monday and to bring the truck! See how long that lasts until they want to send him home! Breanna must have some fluid in her ears b/c she fell down a lot and skinned her knees. She fussed for about 20 seconds and didnt give it a second thought. She is one tough girl. Afterwards we ran over to walmart. Breanna has just about grown out of all her pants lengthwise, they are just starting to fit her widthwise. So we got her a couple of outfits and a jumbo box of diapers... I am so ready for one of these kids to be out of diapers! (Chris is doing better on this). Then home to do laundry and dishes... The weekend sure flew by (Josh would probably argue this though). Hope everyone had a good weekend!

I think Im going to add a section to my updates to include praise and prayer requests

Praise Chris is NED and running around like a NORMAL 3 year old. Breanna is starting to get over this cold and not feel so icky.

Prayer request:
For Benny he relapsed last week and starts chemo on Monday. http://www2.caringbridge.org/az/bennylove/index.htm. Sign his guestbook to let his family know you care.
For clean scans for Taylor, http://www.taylorwatts.org/, who goes in for routine scans tomorrow.
For more research to find a cure for this beast.
That we never have to hear that nasty R word being directed towards Chris.

Linda

Monday, October 17, 2005 11:16 AM CDT

I want to preface this by saying that the kids are doing ok.

Reality slapped me in the face today. I happened to check up on another little boy that has stage IV NB. He had his transplant a year ago last Thursday. They found out on Friday that he relapsed. There is no cure for Relapsed NB so they consider it to be terminal now. They are waiting for the rest of the scans to come back to see how bad it is and decide how to proceed.

Just when you start to feel slighty more secure something like this happens. There needs to be more research for this so that no more of our babies have to die of this. Say a prayer for his family miracles do happen. http://www2.caringbridge.org/az/bennylove

Linda

Friday, October 14, 2005 9:22 AM CDT

Last night Chris was laying in our bed reading a story while Josh was showing and I was cleaning up the dinner mess. I hear Chris scream at the top of his lungs:

DADDDYYYY! Come here!

DDAAADDDYYYY Come HERE!

MOMMY

M-O-M-M-Y Come Here! Quick!

I run in there not sure what hes done but it must be serious for a scream like that. He is still sitting on the bed with tears in his eyes now and he tells me My Thomas tattoo is gone! Hes practically hysterical now as Im trying to calm him down. I promised wed look for some at the store.

Anyone know were you can get Thomas temporary tattooes?

Wednesday, October 12, 2005 8:31 AM CDT

Half-way thru another week already. I cant believe were almost half-way thru the month of October. The Christmas season is upon us. Im trying to get some ideas on things to get the kids. Chris is easy to shop for, but Breanna is more difficult. She also has her birthday 10 days later. Being the second child a lot of the must-haves we already have. And of course we want to try and get her something that Chris isnt going to try and steal from her every chance he gets.

Last week we had mini chocolate chip muffins for Chriss Transplant Birthday. Saturday Josh helped a coworker move and I got Chris hair cut. Sunday was a busy day. We went to church in the morning and over to my moms for lunch. When we got home we had tons of yardwork to do. The grass had to be cut and we had to rake up all the acorns! The kids are amazed at all the squirel food falling from the trees! Monday I had off from work so we got to hang out at home. I am amazed at how much Chris eats. For breakfast alone he had scrambled eggs and hashbrowns, was still hungry so he stole some of Breannas. Then he asked for a PB&J sandwich. He wanted another but I gave him a bowl of cereal that he ate ALL of. Even eating all of that he was still hungry 2 hours later! He probably eats as much as I do! I cant imagine what itll be like when he is a teenager!

Have a great week!

Linda

Wednesday, October 5, 2005 11:52 AM CDT

******************************************************************************
UPDATE: You can help raise money for Pediatric Cancer Research
Volvo is holding a National Event October 8-16 and is donating $20 for every test drive done during that period. In addition they will have an Alexs Lemonade Stand(http://www.alexslemonade.org/) set up. Alex Scott was the 8 year old founder of Alex's Lemonade Stand For Pediatric Cancer Research. Two days before her first birthday she was diagnosed with neuroblastoma. She lost her battle at the age of 8 but her mission lives on. Even if you are not in the market for a new car please consider stopping by and getting a cup of lemonaid. Every cup puts us a little closer to a cure. To find the nearest Volvo dealer to you go to: http://www.volvo4lifeawards.com/cgi-bin/iowa/english/days/index.html In Charleston the nearest is Volvo of Charleston on Savannah Highway.
******************************************************************************

Happy Transplant Anniversary!

One year ago today Chris received his stem cells back to recover from the lethal dose of chemo given to him to kill the tumor cells. It is also called stem cell rescue b/c the dose of chemo is too strong to recover from without the stem cells to rescue him. I cant believe its already been a year. He is doing so well its hard to imagine that this is the same kid that was fighting for his life a year ago.

We went to the doctor yesterday. They are happy with how he is doing. I brought up his re-vaccinations and port removal and Dr. B thinks we should wait until after we do scans again in December to take it out. After those scans we will go 6 months before we scan again. He said we can start the vaccines when we come back in next time in 6 weeks. It feels weird to not have to go back in for 6 weeks but its great to see that we are now to that point. They are going to schedule him for the full set of scans again in early December.

This weekend we took the kids to see Thomas the Tank Engine in person. He was in Spencer NC about an hour from Charlotte so we went up and stayed the weekend with Tonya. The kids were excited to see her. On Saturday we went to Discovery Place. Its like a science museum. They have a whole section just for kids. We took the kids to church on Sat night and Breanna befriended an older gentleman sitting next to us. She scooted over next to him and was giving him high fives. She is such a flirt! Sunday was Thomas day. We had tickets for the 9:15 train ride and had to get there an hour early. When we got there Thomas was just pulling up to take the kids on the 8:30 ride. Chris was so excited! He took off in a run to get as close to Thomas as he could. It was almost like a mini carnival with different activities set up all over the place. They had pictures with Sir Topham Hat(the conductor of Thomas the Tank Engine), temporary tattoes, train tables set up to play with, coloring areas, a magician, a train engine to tour (and the chance to blow the whistle!) and much more. Not to mention funnel cake and snow cones!

Have a great week

Tuesday, September 27, 2005 2:08 PM CDT

Not much to report. The kids are doing good. Our air conditioning broke yesterday. I came home from work to find them with sweat damp hair and the windows open. It took some convincing but I was able to get Chris to take off his blue jeans Its cool to walk around in just your diaper. Look Breannas doing it It only worked for a short while and then he wanted shorts. We pulled some fans out and got the breeze from outside circulating. It was still cooler outside though. We borrowed a window AC unit from my mom and had that hooked up by dark. Finally we got some relief. When we put the kids to bed they were both out within 5 minutes. The window unit was enough to keep the living room and dining room nice, but even with fans it was warm in the kids rooms. I went to check on Chris by about 10 and his sheets were drenched in sweat. He had snuggled up under his blankie. We all camped out in the living room. Chris did good he fell right back to sleep on the mat Josh made for him of some blankets. Breanna was not so easy. She is a great sleeper, but she needs the enclosure that the crib gives her. I tried to lay down with her in the living room and she just wouldnt settle down. She had to look all around and get up and walk around. She ended up going back in her crib when she still hadnt settled down an hour later. She seemed to do ok with it. She doesnt insist on sleeping under her blanket like Chris does. She was also happy sleeping in just a diaper where Chris had to have on at least pajama bottoms. :) Hopefully it will be a quick cheap fix.

Joshs parents live in Beaumont TX. They made it through the storm all right but we are still waiting to hear how their house fared. They were going back to Beaumont yesterday but were unreachable by cell there might be some down cell towers causing them to not have a signal. We know that they dont have electricity and it may take up to 2 weeks for it to get back on. Please pray for them and everyone else that has been affected by these hurricanes.

We go see Thomas this weekend. Chris hasnt mentioned it in a few days, but Im sure hes going to love it. Breanna should also be old enough to get a kick out of it too. Ill have to take lost of pictures.

Next week Chris has his follow up with clinic for a physical exam and blood work. He also is scheduled to meet with the GI docs to see if they can figure out how to help his chronic constipation. Next Wednesday, October 5th also marks 1 YEAR POST TRANSPLANT!!!!!!!!!!! It is so awesome to be able to say that. So much has happened since than. More on that later.

Oh there has been so big press recently on Neuroblastoma! A little boy from Australia is being treated at Sloan Kettering in NYC the only place that was willing to attempt surgery on his recurrent tumor. His family has had to do a lot of rallying to be able to fund the treatment (insurance wont cover it b/c they dont think his chances were good enough). And thats how he came to meet Nicole Kidman (a Aussie) and then Angelina Jolie. His mom thinks this is a great opportunity to get the word out about Neuroblastoma and to encourage more research $$s to go towards finding a cure. Check out his page at http://caringbridge.org/ me/dylanhartung/

Well I guess I did have more to report than I thought! Have a great week everyone!

Linda

Tuesday, September 20, 2005 7:09 AM CDT

What a long week. We got out of the hospital last Monday. He was supposed to get 7 days of IV antibiotics at home. We had to wait for the delivery driver to bring the meds out Monday night. Poor guy didn't get there till 11:30. Then he had to drive back to Greensboro NC. For some reason my insurance has us getting med. supplies from NC. Tuesday when I tried to give him his meds his port wouldn't flush. He needed to be re-accessed. Same thing happened Wednesday. The home health nurse came out both times. Weds I felt horrible so I went to the DR and I have the Summer flu. Dr said it responds to antibiotics though. Breanna was doing much better and probably had a mild case of it too. Saturday Chris' port came out again and of course I had run out of med supplies and had to go to the ER to have it accessed. It was a quick (2 hr) visit though. Sunday was his final dose so I was able take out the needle and de-access him.

Chris is doing good though. He is a very happy kid. He has developed the attitude of a 3 year old though. He is SO bossy. He never asks for anything he TELLS you. :) Breanna is going through a no phase. She doesn't want these shoes and that shirt or those pants one minute but she does want the same shoes/shirt and pants a minute later.

Take Care,

Linda

Tuesday, September 12, 2005 11 am EST

*******Update*********
Tuesday, September 12, 2005 11 am EST
We got out of the hospital yesterday afternoon. His blood cultures from Sunday were negative - so his infection is responding to the antibiotic. We are going to continue doing the IV antibiotics at home for another 7 days. Chris was glad to be home and exstatic to see his sister.

Thanks for thinking of us.

If you've got a minute please say a prayer for Breanna. She has had a low grade fever since Sunday.

************************************
Sunday, September 11, 2005 4:13 PM CDT

We're in the hospital again.

Chris has had a slight cold for almost 2 weeks but it wasn't bothering him. Just a runny nose really. Well Friday morning he woke up with a 102 fever. Because he still has his port in we had to go to the ER to have blood cultures done. If the infection were to get into the port and not be treated it would get serious very fast. They did a cbc and blood cultures when we got to the ER. His white count was 20,000 about twice what it should be. The dr's said this indicated that he was fighting an infection so they put him on antibiotics and decided to admit us for the night. Of course they didn't have any rooms available so we waited in the ER from 7:30 am until 5:30pm when they finally had a room for us. On Saturday they told us that his blood cultures came back positive but that it didn't say for what yet. The good news was that both blood cultures (the one from the port and the one they took from an IV in his hand) came back positive - meaning that it wasn't just an infection in his port. This morning they told us that it is pneumococus (not sure on the spelling). It is a bacterial infection that should respond to the IV antibiotic that they have been giving him. They took more blood cultures this morning and if they come back negative tomorrow than we will get to go home. He will still need to be on IV antibiotics for another week, but we can do that from home.

After his first dose of antibiotics he started feeling better. He fever broke mid afternoon on Friday and he has been talkative and playful. He has quite an appetite!! About 45 mins after finishing eating breakfast and he is asking for a snack. It's good to see him with an appetite.

Say a prayer that the infection responds to this antibiotic and that he is better soon.

Thanks for thinking of us!

Linda

Tuesday, September 6, 2005 12:19 AM CDT

Just got a call back from the hospital and his scans are CLEAN. We are still No Evidence of Disease!!!

He had his bone scan, MRI and CTs last Friday. Everything went good with the anesthesia - they did mention that his throat looked a little red and swollen but I think he's just got a cold. He's got the runny nose to go with it. Hopefully it will clear up in a few days. They didn't schedule an MIBG scan this time which seems strange. I'll have to ask the dr when we are in next week why that is.

Thanks for all the prayers for clean scans!!

Friday, August 26, 2005 10:08 AM CDT

Happy 3rd Birthday to my little man!!!!

We had Chris party last Saturday and boy was he excited. When people started arriving with presents he responded with "ARE THOSE FOR MEEEE???". I guess in all the hype we didnt tell him he was going to get presents. We put their little kiddie pool up in the yard and they had a blast. He got a fisher price kitchen set from my mom and was serving up plastic pear and oranges to all the guests. We will have to get him some more fake food and dishes because Breanna was very interested in it also. Uncle Steven got him a electric guitar with a microphone. Thanks. I think Ive got the next American Idol on my hands. :) He also got some more Thomas the train stuff, more train track, some dinosaurs, coloring books, a toy lawn mower and some other things. He loved his Spongebob cake and was blowing out candles before we could finish singing Happy Birthday. He is so social and loved having everyone over just as much as getting presents.

I dont want to jinx it but he has been doing very good on potty training this week. We have put him in underwear when I pick him up from daycare the last 2 days and he had 1 accident the first day and none yesterday!!! WOOHOO! We even went to the store with him in underwear!! I am SO ready to be done with diapers. Still have Breanna in them but at least we could cut the # in half.

As far as medical news goes everything has been pretty good. He went to the dentist on the 18th to have a filling. They didnt do anestethia and instead gave him a tranquilizer. It was kind of odd. They give him the medicine and then send us back out to the waiting room to wait for it to kick in. They expected him to fall asleep but that didnt happen. Instead he just got drunk. He was wobbly in the legs and giggly and looked like he was 3 sheets to the wind. Of course we were sitting in the waiting room with all of the other parents that had taken their children to the dentist that day wondering what in the world was wrong with him :)

We have scans next Friday so keep a happy thought for us! Hope you all had a great week!!

Linda

Wednesday, August 17, 2005 6:34 AM CDT

The kids are now on their third week back with Ms Nellie. Everything is starting to get more routine. The kids are getting better at being woken up so early. Breanna has no trouble in the morning. I can guarantee that when I wake her up she will smile up at me and say in her sweet little voice "Good Morning". Chris on the other hand is a little grumpy for the first 30 mins until he wakes up. He has insisted on having turkey sandwiches everyday this week for breakfast.

The Saturday before last we took the kids to Cypress Gardens. I had never been but heard that they were having a "Meet the Parrots" day. Chris got to pet a cockatoo. We weren't sure how gentle Breanna could be so we let her watch. They had a cockatoo that was obviously used to kids because it would wait until you werent paying attention to it and then say "HELLO" and then in a very child-like imitation screech "B-I-R-D-I-E!" They had a butterfly house, reptile house, aquarium, crocodiles, and boats. You can take a self guided boat tour through the swamp. Breanna cried half the way because she didn't want to be held. She scared all the crocodiles away. If you've ever seen the Patriot some of it was filmed in Cypress Gardens. The swamp scene were the militia is meeting up was filmed there.

We saw the ENT surgeon on Monday the 8th and he was very impressed with how things look. They did a series of 'tests' to see if their was any problem with his cheekbones. The doctor had Chris mimic him raising his eyebrows, scrunching his nose, sticking out his tongue, etc. Chris cooperated rather well. The scans from June show scar tissue where the cheekbone was. But they feel good that it might grow back on its own. They will follow up with him in a year. The Dr mentioned that because of the facial tumor he has a slightly higher risk of getting meningitis but not to worry. We also saw the Urologist on Thursday. They said that they want to follow up in 3 months to see if surgery is needed. He also had clinic on Thurs. His counts look great. They will start redoing the vaccinations in November and probably remove the port around the same time. Scans were scheduled for Sept 2nd.

Chris's birthday party is this weekend! He turns 3 next Wednesday. He is so excited. Last night he told me to go make plans for his party. :) What a goof ball.

Have a great week.

Linda

Thursday, August 4, 2005 8:06 AM CDT

Good Morning. I am so tired today. My dad had been watching the kids when I went back to work until Chris was far enough off transplant that he was safe to go back to the home daycare he was in before. We didn't want him to be around extra kids if we could avoid it. It worked out well, my Dad came to our house so I didn't have to get the kids up and dressed in the morning. Monday they both went back to the home daycare. The kids love it there and even when they weren't going there we would stop by to visit. Now I have to wake up an hour and a half earlier to get ready for work and make everybodys lunch and breakfast and get them up and ready

Need Coffee

Last Friday Breanna had her 18 month checkup. She weighs 24 lbs and was 33 inches. The dr was impressed at how much she talks. Sunday we took the kids to the beach. They loved it. It wasn't as hot as it had been all week and was very enjoyable. Chris' favorite thing to do was to relocate the sand from the beach and throw it in the ocean.. Lol

Monday they started back with Ms Nellie. They had a great time. Tuesday Breanna cried when I left and Wednesday Chris did. Ahhh they'll get used to it and back in the swing.

Alright now some cute stories:

When I picked Chris up on Tuesday I told him to go get his shoes because we needed to go. He told me "It's not fair!" ?!? I didn't think they learned that just yet. Sigh, better that he is saying it now than this time last year. It would've broke my heart.

We went to the store Tuesday afternoon and the Publix has those buggy/cars with the car at the front that you can strap the kids into. The kids were loving it 'driving' around the store. And then Chris leans over and puts his head on Breanna and starts playing the "Don't hit yourself" Game. If you're not familiar with this it is a kids game (Daddy taught him it) where you take your friends hand and use their hand to smack them in the face. You don't clobber them or slap them hard just a little pat. It goes with the annoyance factor. All the while you are doing this you tell them "don't hit yourself". So Breanna was his victim of choice. That's the first time I've seen him do it and I couldn't help but laugh. Breanna wasn't as impressed. I had to distract him with helping me pick out a dozen eggs to get him to stop.

Breanna has been carrying around a babydoll all weekend and feeding it her bottle, wrapping it in a blankie and singing Twinkle Twinkle to it :) So very precious.

HAVE A GREAT WEEK EVERYBODY.

Linda

Monday, July 25, 2005 10:04 AM CDT

Long overdue update

Where to start

Chicago
We had a great time in Chicago. The kids were excited and ready to leave on Thurs morning. We left the house at 10 am and luckily that excitement lasted until we got into Chicago at 8:30 pm. The flight to Detroit went smoothly and the kids were really good. We had to hustle across the terminal to make our connecting flight only to wait on the plane for 2 1/2 hours b/c Chicago had a delay on incoming flights. By the time they decided to let us get off the plane to wait it was lightening and we couldn't pull up to the gate. Oh did I mention the a/c on the plane wasn't working? The lightening finally stopped and they let us off while they refueled the plane. We had to wait for another hour and a half for that to happen By this point I was expecting the kids to act up but they were pretty good. We finally got to the hotel in Chicago, got checked in and went to get a bite to eat in the hotel restaurant. They were not kid-friendly. It took them forever to find a hi-chair and they brought the kids drinks in glasses(small glasses though). When I asked if they had anything with a lid (to-go cups) or plastic??? They brought me a starbucks cup with the coffee sipper lid. Luckily the straws fit in there. When we finally got to the room they hadn't brought up the crib for Breanna yet. But that was easily fixed with a phone call. The kids went right to sleep. Breakfast was great at the conference - the kids loved the fresh fruit. They weren't quite so sure about the kids room. Chris told me I should stay and play with him and even at one point asked if we could go home. He did have a good time though. They were able to get Breanna to nap but Chris was too busy for it. The conference was very good. We got to learn about some of the things they are learning about neuroblastoma and some of the DNA markers. Some of the conference was on the lower stages and didn't apply to Chris but it was good information. Friday night they had a dinner and a dance but we left early b/c the kids were sleepy. Saturday there were more speakers and they talked about some more topics and had some long-term survivors talk. That was neat. There are survivors in double-digit years of survival. We went downtown Chicago with a mother and her daughter Saturday night. Her daughter was Breanna's age and was adorable. We went to Millenium Park and the Navy Pier. We were exhausted by the time we got back to the hotel. We flew home Sunday. Luckily the flight home didn't have any delays and the kids slept from Chicago to Detroit but Breanna's nap was cut short when we got to Detroit and she was cranky on the trip to Charleston. She screamed for at least half of the flight. I feel bad for the other passengers but we tried everything we could think of.

Dr Visits
Chris had a radiation follow-up on Thursday. Josh took him b/c I was swamped at work. The Dr said he looks great. He doesn't have to go back for 6 months! Since he was at the hospital they stopped at clinic and found out the date for our appt with the ENT surgeon. Aug 8 we'll meet with him and see what he thinks. We might need to add something to the scans he's scheduled to get end of August.

The kids went to Cousin Becky's B-day party this weekend and had a blast. She has a tree house with a slide and swings. We had to drag them out the door when it was time to go. :)

Hopefully this week will be a little less busy than the last two. Only thing really on the schedule is Breanna's 18 month well-baby check up on Friday. And then we have NO dr's appts for next week! Of course after that things get busy again with the ENT appt, the urologist, clinic, the dentist for the cavities, and scans and of course Chris's 3rd Birthday on August 24th!!

Hope everyone is doing good and have a great week!

Linda and crew

Saturday, July 23, 2005 12:09 AM CDT

We've been super busy but wanted to say that everyone is doing good. We had a great time in Chicago and met some nice people. I'll update more soon.

Love you all!

Linda

Wednesday, July 13, 2005 8:21 AM CDT

We want to send a HAPPY BIRTHDAY wish out to my little brother DANNY. He is stationed in the middle east. Don't know if you will be able to see this but we miss you and hope you have a good day!

Love,
Linda, Josh, Chris and Breanna

We are getting ready for the annual
Neuroblastoma conference. Everyday this week as soon as I get home from work Chris tells me it's time to go ride the airplane! He is so excited. I don't think Breanna understands. The kids are doing great. No dr appointments this week. I'm still not used to that. Chris went to the dentist last Thursday. This was a new dentist b/c I didn't like the old one. He does have cavities but this guy doesn't think we need to remove them in the OR. We can do them in the office. They still plan on using light anesthesia (maybe gas?) to knock him out a little. The dentist said the cavities aren't too bad. Hopefully it will go smoothly with little fuss. They couldn't schedule it until Aug 18.

Have a great weekend and keep a happy thought for us flying tomorrow.

Linda

Wednesday, July 6, 2005 1:31 PM CDT

Happy 4th of July! We had a good weekend. We had hoped to pick blueberries on Saturday but got there after they closed. Maybe next weekend. Sunday we went to church - Chris loves to 'go see Jesus' - if only I could get him to behave the whole way through. The kids swam in the kiddie pool Sunday until it started to rain. Monday we had a picnic at my Moms house. The kids were so cute. Breanna insisted on sitting at the table like a big girl (These kids are just getting SO BIG). Josh did some fireworks outside to which the kids were not as enthused as we had thought they would be. They didn't cry but didn't seem to care too much. Chris helped Grandma weed her garden (he doesn't differentiate between flowers and weeds though -hehehe). On the way home we stopped to see the local firework show and the kids were a little more impressed (it was also dark so they were easier to see).

Yesterday we had fun. We took the kids to the beach in the evening to walk on the sand and play with the soccer ball. Well they had different ideas. First I've got to tell you that last year Chris hated the ocean. He didn't even want his toes to get barely wet. Yesterday he ran straight in to about shin deep. Breanna was right behind him. I was so surprised all I could do was laugh. We hadn't planned on taking them swimming so we didn't bring a change of clothes for them. But they didn't care. Should have known better when he took of his shoes and socks but I thought he wanted to be like daddy.. Makes me feel good to see him do things that are typical little boy stuff. He's definitely got that mischevious look back in his eyes.

We had clinic today. Everything was fine. He screamed bloody murder getting his port accessed but I guess that's b/c he forgot how it felt and hasn't had to have it done in a month. We go back to clinic 8/11 to check blood counts, flush his port and have an exam. The port has to be accessed and flushed at least once every 6 weeks to keep it from clotting. They don't like to remove it until you are 6 months off treatment. That should work out because that will be about the time we can do the reconstruction on his face. The tumor had eaten most of his right cheekbone. The dr's didn't want to do any reconstruction while he was on chemo b/c he wouldn't be able to heal the way he should. Same thing with transplant. So they said to wait until 1 yr post transplant before they do anything.

All right that's enough for now. Chris has a dentist appointment tomorrow so I'll update later on how that went.

Linda

Wednesday, June 29, 2005 9:36 AM CDT

Another busy weekend! Saturday was my brother Stephen's wedding and Chris was the ring-bearer. The ceremony was beautiful and everyone had a great time. We had fun trying to keep Chris from ripping his flower off. Once we told him no cake unless he left it alone he got the point. Both kids enjoyed the reception - plenty of food and tons of people to 'mingle' with(which really means steal food off their plate :-) ).

Chris is very excited. He gets to come with us to Chicago for the annual Neuroblastoma conference. It will be a chance to meet with other parents and leading researchers in the field. Of course this means he gets to ride in an airplane for the first time. He's ready to pack now and we don't leave for 2 more weeks. We're bringing Breanna too. It should be interesting to see how they do. The parents are in meetings from 9-4 and the kids are in a Kids Room. Keep a happy thought that the kids (Breanna especially) will cooperate and not fuss too much being left in there.

We have clinic next Wednesday and a dentist appointment on Thursday. Hopefully we will get good news from the dentist and not have to schedule surgery to remove cavities.

Have a great 4th of July weekend!

Linda

Tuesday, June 21, 2005 8:40 AM CDT

Happy Tuesday. We had an OK weekend. Met some friends Friday night for dinner at Chick-fil-A with Chris. He had a great time playing in the playroom. Sunday we had a failed attempt at church. Chris was excited to go but became a brat once we got there. Tried to take him to the quiet room but it was standing room only(always seems busier on holidays) and he wouldn't quiet down and behave so we went home. Got a call from the Dr on Friday. MIBG was perfect. They are referring us to a urologist and we should hear from them soon as to when the appointment is. They are also finally sending him to an ENT for follow-up on his tubes. I'm surprised they are still in they have been in for 14 months. But that shouldn't cause any problems. Breanna is still doing great aside from teething pain that causes her to be a monster at times. She is so cute when she is ready for bed she will just say "Nite Nite" and walk down to her room. I'm lucky for that. Chris still sleeps great although he's doing the "1 more story" thing to try and delay bedtime. Josh and I are doing great. We are going to my brothers wedding on Saturday. Chris will be the ring bearer! Hopefully he won't embarrass me. I'm sure he'll do great. Have a great week!

Linda

Friday, June 17, 2005 6:51 AM CDT

We are now done with another round of scans!! We should get the results of the MIBG by Monday but now that we know the rest are clear we aren't as concerned. We went to clinic on Weds to have them check on the sinus infection but they said not to worry that it was "clinically insignificant". But they also found on the scan that he has an undescended testicle - which is weird because it hasn't shown up on scans before now. He had the indignity of having 3 doctors check for it and now they are going to send us to a urologist to see what they think. It's possible he might need an outpatient surgery.

Have a great weekend and Happy Fathers Day!

Linda

Monday, June 13, 2005 2:02 PM CDT

Preliminary results are in on the scans and it's GOOD!

They did see what they think is a sinus infection so we will go into clinic on Wed. when we are their for the MIBG scan.

Had to share the GOOD NEWS!!

Linda

Monday, June 13, 2005 7:00 AM CDT

"And God Bless Everyone Else" this was how Chris ended his prayers last night. Usually he will name off everyone he can think of and say Amen. But last night he threw in "Everyone Else" Too cute. We had scans on Friday. Everything went good hopefully we should get some results by this afternoon. He was under for 3 1/2 hours and no matter how many times we've done this I always get nervous half way through it. When they let me in the back to see him he was half awake with his finger in his nose He woke up good though and even wanted to stop in the cafeteria to get something to eat on our way out. On the drive home his face got really red and he felt warm. He had a slight fever when we got home but he cooled down soon after. We think maybe it was just a hot day and the sun shining on him in the car caused it. We have more scans on Wednesday and Thursday of this week.

Keep your fingers crossed and a happy thought as we wait the results of the scans.

Thanks,

Linda

Wednesday, June 8, 2005 8:49 AM CDT

We are now 8 months post transplant! Chris's skin seems to have healed from the accutane. We've even allowed him to play outside in the late afternoon! He's right on track with his stomach problems. Monday he was having a lot of crampy pain and constipation. He's still taking his miralax but it didn't seem to do enough, so after a day of hardly eating anything and lounging on the couch instead of playing we went the enema route. Not enjoyable for any of us, but at least he's eating and playing again. Hopefully he's done with it now but it wouldn't be unusual for him to have problems for a few more days. Maybe after he's done with these side effects we can tackle potty training. I'm definitely ready to not have to buy diapers for 2 anymore. Anyone know if 18mos is too early to train Breanna? If I can do them both at the same time maybe the 'peer pressure' would work for them. Breanna is doing great. She has a couple more teeth popping through but doesn't like to show them off. She is very expressive. She will forcefully tell us "NO!" or "Go away!" when Chris tries to take the toy she is playing with. She is rather obnoxious when she climbs on the coffee table and talking to herself mimics me saying "get down get down". Then she catches my eye and will get down.

Keep a happy thought for Fridays scans.

Linda

Friday, June 3, 2005 12:55 AM CDT

Just wanted to finish updating from yesterday.
Wednesday at the hospital we got our hearing test taken care of. Last time it showed some high-pitch hearing loss but everything was fine this time. We also went and had a echo and an EKG. I don't know the results of that yet. We went to clinic and had a check-up. His right ear starting oozing on Wednesday so the dr took a look at it. His tubes are still in. The dr said that they are doing what they are supposed to and that it is an ear infection. He got antibiotic drops to put in. Kinda wierd and I'm not sure if it is related but he tells us that there is a 'little monster' in his ear. If the little monster doesn't go away in a week when we stop with the drops I'm going to take him back in to have them check it again. The wierd this is they told us we don't have to come back in to clinic for 6 weeks!!! I expected them to do a follow up on the ear infection. I might take him back in anyways if I'm still concerned. Next Friday he has his SCAN DAY. Bone scan, CT, MRI and Bone Marrow. It usually involves at least 3 hours of sedation. His MIBG was rescheduled for the 6/15 injection and 6/16 scan.

I find myself keeping track of several other kids that have NB through there websites like this one. I find it encouraging to see what they've gone through and that they made it. The family of one of the kids just found out he relapsed. He was almost a year and a half post trasplant. He was fine and within a week everything fell apart. He had a fever - maybe a virus. They went to the hospital checked his counts and they were low. They ended up doing a bone marrow check and he's got it all in the bone marrow. The dr's have told the family there is no cure for it and it's all about buying time. The think they have maybe 3 weeks. That is HORRIBLE. To think that any child with Neuroblastoma can go from happy kid one day to 3 weeks to live with hardly any symptoms is terrifing. Please pray that more research is done to give these little ones more of a hope. It seems that once relapse happens the dr are grasping at straws with no real idea what might work. Keep that family in your prayers - the boys name is Jamie and he is 5 years old - that they find peace and if its Gods will that there is a miracle for him.

Linda

Thursday, June 2, 2005 2:16 PM CDT

Almost time for another weekend. Last weekend was great. 3 days off work can't be beat. We took Chris to see the movie Madagascar and he loved it. It was his first movie theater experience. He didn't weigh enough to keep the seat from squishing him though so I had to prop my knee on it. :) He sat nicely through the whole movie and loved having popcorn! We left Breanna at home - didn't think she could sit through a movie just yet.

We had an exhausting day at the dr's yesterday. We were supposed to have our MIBG scan and when we got there they told us we weren't scheduled. After calling around a while to see what was going on it turns out that someone rescheduled us by mistake. Since we were there we took care of the hearing test - results looked great- the echo and the EKG. We also saw the oncologist for a regular visit. He has an ear infection and some smelly drainage from his ear but they said it will be ok with some antibiotic drops.

I'll update more tomorrow....

Linda

Wednesday, May 25, 2005 8:24 AM CDT

We had an unnerving night with the kids. On Monday Chris hit Breanna in the head with a train track and she had a little bump and a cut in the middle. Nothing too bad. When I got home from work on Tuesday the bump was double in size. Probably the diameter of a quarter and at least half an inch raised off her head (just in the right spot to be a horn on her head). It wasn't bright purple but was slightly blue tinted(bruise colored). It didn't seem to hurt her when touched and didn't feel hard. It really confused me that it didn't appear for more than 24 hours after the 'incident' with the train track. We called the after-hours nurse and when the Dr called back he said that it is very NORMAL and that it's a hemanoma(sp?) - a blood filled pocket and it should go away on its own. That relieved our fears a little. But at bedtime she was a real mess to put down. She's always been great at going to sleep and I just put her in the crib and she cuddles up with the blanket. But last night she screamed and screamed. We're thinking it might be teething because at one point she had both fists in her mouth. Baby orajel and tylenol still didn't seem to do the trick and it was difficult to get her to bed. This morning her lump looks much better and smaller! Hopefully she's fussy b/c of her teeth and they'll come through soon.

Of course Chris can't be outdone by his sister so this morning he pitched a major fit when I told him that "No we're not going to see your nurses, Mommy's got to go to work" and when I try to give him a hug before I leave I notice that he has blood in his ear. I'm hoping that it's just dry skin and he rubbed it too much but who knows so I call the Dr's and see what they think.

What a day! Hopefully the rest of the day will be better than the start.

Linda

Tuesday, May 24, 2005 11:48 AM CDT

We are now officially off the Accutane!!! It'll probably still be 3 weeks before all the side effects wear off though. Chris' poor skin looks horrible. He has the dry skin rash on his arms and legs. It looks almost like rug burn. He wants to go outside and play so badly (and so do I - I'm tired of keeping them couped up in the house!) but I want his skin to heal before we do that. There's still Accutane in his system and I don't want to make it worse. We've got our scans scheduled. We have our MIBG next Wed/Thurs. Also Audio, Echo and EKG. The following week on Friday we have our scans (MRI, CT, Bone, and bone marrow). That will be a full day - usually about 3 1/2 hours of sedation for all of the MRI/CTs.
Breanna's doing great. Developing a little temper when she doesn't get things her way. And Chris has a little attitude. I was talking with another parent yesterday and Chris interupted me "Mommy stop talking and play with me" I was a little flabergasted.

Keep happy thoughts for our scans next week. We want clean scans with NO EVIDENCE OF DISEASE and no trouble with the sedation for the MIBG and the scans.

Thanks,

Linda

Friday, May 20, 2005 6:58 AM CDT

We are now 7 1/2 months past transplant and only 3 days left until we are OFF treatment. This round of Accutane has definitely been the worst. I think the warmer weather and the sunlight is causing it to dry his skin out soo much more. His arms and legs are terribly dry and his face including ears has a lot of flaky skin on it. He doesn't like to wear long pants b/c they rub against his legs and it hurts. Even the sun exposure he gets while riding in the car seems to have an impact on it. Overall he seems to be pretty happy and plays a lot. He still has some pain from the stomach cramps he is getting - also from the accutane. He is very cute with Breanna. Before she goes to bed each night he will give her a hug and a kiss. He is growing up a lot. He no longer begs me or Josh to lay down with him every night.

Please keep us in your prayers. We will never be able to go back to the 'normal' life we had before. We will always have to worry if Chris complains that his leg hurts whether it is normal kid stuff or something much worse. Neuroblastoma has a high (70 relapse rate which is very scary. Thank you all for the support your given us. We will never be able to let down our guard and it feels overwhelming at times.

Linda

Tuesday, May 10, 2005 11:03 AM CDT

What an eventful weekend! Chris has been doing great recently and hasn't been to the ER since Christmas. Then comes Saturday. Chris was complaining that his port hurt. I thought it was wierd but he got distracted and forgot about it. When I go to put his pj's on for bed Sat. night I notice that his port now wiggles a lot more under the skin. It used to be stationary. I wasn't sure whether this was a problem or not, but Josh wanted to call the dr's and be sure. Of course they couldn't tell based on our description over the phone so we have to go to the ER and have a Ped. Surgeon take a look at it and make sure it's OK. Better to over-react than under-react so we head off for the ER. Saturday night at the ER is always busy (or so the nurse told me) and there was standing room only in the waiting room. I take Chris back outside to get him a mask out of the car. Even though we're 6 months post-transplant I don't want him to pick up some virus at the ER that could wind us up back in the hospital for ever while he tries to recover. Luckily when we got back in they were ready for us in triage and then triage nurse told us rather than send us back to the waiting room she would send us straight to an ER room (THANK YOU!). When we get there I start getting Chris all set up. We brought a pillow and blankie from home, his pj's, stuffed Nemo and a movie (they have DVD players in the ER rooms) because I wasn't sure how long we would be there or if we would have to be admitted. The nurse comes in and jokes that she normally offers to get patients something but it looks like I had it all covered. I told her that we're regulars when it comes to the hospital. The child life lady that used to be up on 7B came in. She is now working in the ER. She entertained Chris for a while blowing bubbles. The dr finally came in and ordered an X-ray. Chris was very good about having his 'picture' taken. He's gotten quite used to it now. The results showed that the port was still attached to the artery that leads to the heart and we've concluded that he must be growing and that would explain the port being a little loose. We finally got home by about 1 a.m.
Sunday was ok. We were all still tired from the ER the night before. We went strawberry picking and the kids had a ball. Clinic went good yesterday. We started cycle 6 of Accutane. Only 2 weeks to go and we will finally be done with it. I really want to get Chris' portraits done, but his skin hasn't been clear (not flaky) since we started the Accutane.

Have a great week!

Wednesday, May 4, 2005 12:47 AM CDT

Happy Wednesday. Everyone here is doing alright. Chris had a horrible cough this weekend but with meds it seems to be better. The dr thinks it's just a cold and we will just have to watch it. We went to a church picnic on Sunday and had a great time. It was overcast so not as hot as it could have been. Breanna is finally over her cold and is such a delight. She lights up when I get home from work and likes to jabber though only half of what she says is understandable. Chris won't stop talking! He is such a chatterbox I have to tell him to stop talking and eat at dinnertime. He has such an imagination.

Have a great week and Happy Mother's Day to all Mother's out there!

Linda

Thursday, April 28, 2005 7:30 AM CDT

Things have been going pretty good. Breanna has a nasty cold and had to go to the dr on Monday but is starting to feel better. She no longer sounds like she is choking when she coughs. Chris went to the dr Monday also for our regular weekly checkup. Everything looked good. We get 2 weeks off the Accutane and then we start our last cycle of it!!! I will be so glad when this stuff is done. It really dries out his skin bad and gives him a lot of 'tummy trouble'. Not to mention we will then be considered OFF treatment. That sounds kinda scary. All we've known for the last year has been treating him so the cancer goes away and doesn't come back. It's almost like we will stop treatment and wait to see if it comes back. Definitely scary. Relapse rate in over 70%. I've got to remind myself to be positive. There is no guarantee for the future but we have today so we should make the most of it. Please keep him in yours prayers. We pray that he never has to be given poison to make him better and that advances are made in the treatment of this disease.

Thank you all,

Linda

Wednesday, April 20, 2005 10:05 AM CDT

We had a great weekend. Chris did the Survivors Lap for Relay for Life on Friday night and was so excited. He stood at the front of the group of Survivors holding up the banner. I carried him the first lap (so he was tall enough to hold the banner ) and he walked the second lap. I was so proud of him! And the whole time Josh was running backwards in front of us catching it all on the camcorder. Chris was the youngest survivor there. After the first lap they had a catered dinner for the survivors. They even let Chris cut the cake (with my help). I thought for sure he'd stick his hands in it - but he didn't.

On Saturday we went to the Happy Days Spring Fling. The weather was great. It was a little cool and had a great breeze. We went on an airboat ride. That was quite an experience. You have to wear headphones b/c its loud. The airboat was just like what you would see in the bayou. It was the Charleston County Rescue Squad. They can use the airboat to get up on the marsh and sandflats. The whole time Chris was giving me thumbs up. They also had horse ride. As I went to put him on the horse he told me "I can't. I'm sick" So he watched Josh ride the horse and then he rode with me on it. He was enjoying it by the time it was done. Then I took Breanna around on it and she LOVED it. She kept trying to grab the horses hair. Next Josh took Chris up in the 'boom truck'. It was an SCE&G cherry picker truck. The ones they use to work on the power lines. He was not scared at all. He was just waving to me from about 50 feet up. They also had an air castle there and when the other kids cleared out of it we let Chris and Breanna in. They didn't jump too much but where impressed with walking on 'air' and giggling.

Clinic went good on Monday. His counts are good. We think he's got some allergy issues though. He had a clear runny nose and watery eyes. I called the Dr. this morning because now he has green snot. I wanted to see if we could do a decongestant to help clear it up. It could be a cold or sinus infection or who knows. They said I can give him benadryl, sudafed, and delsym. But that I need to read the labels and make sure that I'm not getting a mixture of other things in the meds. They said to watch him and of course if he has a fever or stops eating and drinking to call. This is his first cold since transplant so hopefully it will be mild and will serve to reteach his immune system how to fight back.

On a Breanna note she gave us a heart attack on Sunday. She managed to open the screen door and walk/tumble down the steps before we could stop her. She has a black eye but otherwise seems fine. We are going to have to start locking the screen door and figure out something else to do before she learns how to unlock it.

Have A Great Week!

Linda

Tuesday, April 12, 2005 9:02 AM CDT

Have you ever seen those guys that go to a football game and paint there body in the teams colors. I have a feeling Chris is going to be one of those guys when he grows up.
We went to a Riverdogs (minor league) baseball game of Saturday and he LOVED it. He screamed at the top of his lungs telling the guys to "RRRRUUUUNNNNN!!!!" or "SWING BATTER" I think we are going to have to go to another game b/c he enjoyed it so much. Chris also got a haircut on Saturday. It was more of a trim than a cut though. They just trimmed it around his ears and at the back of his neck. It looks really nice now.

Yesterday was a busy day with appointments. We had our clinic appointment in the morning. His labs are WONDERFUL. WBC - 5300 (normal 5000-11000), RBC - 12 (normal 11-15), ANC - 3190 (normal 2000-6600), platelets - 250 (normal 140-440)!!! They were impressed with the results and we started cycle 5 of Accutane. We also went for a follow-up appointment for Radiation. The docter was impressed also. They looked at his stomach muscles and said that everything looks normal! They also looked at his spine and it looks straight. I guess because they targeted the radiation at his belly the muscle could be weaker and the spine might not be as straight as it should. But everything was good!! We are supposed to come back in 3 months.

Breanna also had a dr appointment yesterday. She had her 15 mos check-up. The difference between the two kids is night and day. Chris is in the dr office weekly so he is very used to seeing docters and nurses and is very social with them. He even helps with the stethescope and blood pressure. Breanna was fine with the dr apt until the dr walked in. Then she clung to me. She was impossible to weigh - finally got it. She now weighs 21lbs 8 oz - 25% for weight. Then she fought to get her height. She is 31 inches tall - 90% for height! She screamed as the dr tried to listen to her heart. She tried to hide in my arms when they looked in her ears and was not at all happy when the dr had to feel her belly! And to top it off she had to get 3 shots!!! Needless to say she was very cranky yesterday afternoon. But she doesn't need any more shots until she is 4! Of course the dr wants her to come in for another check-up in 3 months.

Chris is starting to gain weight and it actually looks like he has some meat on his bones. He's got some fat on his hips and ribs which were so scrawny for so long. He now weighs 29.8 lbs or 13.6 kg and is 36 inches tall. It won't be long before Breanna catches up to him on height!! And weight for that matter!

We have another busy weekend coming up. This Friday Chris was invited to the Relay for Life. He gets to do the Survivors lap!! This is a fund raiser to raise money for cancer research. They are going to try and find a t-shirt that will fit him. Friday is also the anniversary of when we met his Oncologists for the first time 1 YEAR AGO!

Saturday we are going to a Happy Days picnic. Looking at pictures last year they had a petting zoo and boat rides and lots of fun and games. Happy Days is a great organization that is there for families going through times like these. http://www.happydaysnspecialtimes.org/

Have a great week!!!

Wednesday, April 6, 2005 2:00 PM CDT

Yesterday marked 6 months since Chris' BMT in October.
It's hard to believe half a year has passed since that day the dr injected him with his own stem cells in an effort to save his life. Next Thursday marks one year since we were told he had cancer. So much has happened in the last year. But I'll write more on that later.

We went to the Dentist on Monday. As expected there were a few spots that caught the dentists attention. To treat cavities in a child his age they would probably have to do it under sedation in the OR! Yuck! The dr decided we can wait that he's not 100ure they are cavities and that we should brush brush brush and come back in 3 mos. He also mentioned we should limit sugary beverages and snacks (including goldfish!!) Chris loves to drink sweet tea so we are going to have to find a substitute. The dentist also wants us to try and floss his teeth!! That should be fun...

After the dentist apt we went over to the main hospital and visited with his old nurses on 7B. He was so happy to see them and felt right at home. He tried to go into his old transplant room even! He was very impressed they still have wagons and chatted the nurses up. They loved to see him and commented on how well he looks and how much hair he has!

We also stopped by Radiation to see his nurses and schedule his follow-up apt. He didn't want to leave there either!

Have a great week! Don't forget to check out the pics and sign the guestbook.

Thanks for all your prayers and support!

Thursday, March 31, 2005 7:36 AM CST

Clinic went good on Monday. Chris has so much energy. He was running around and wouldn't sit still for a minute. The drs were very impressed with how good he looks. We don't have to go back to clinic for 2 weeks!! We do have a dentist apt on Monday though. Hopefully Chris will cooperate. This weekend we hope to go to the Flowertown Festival. His counts are doing great but we'll probably mask up just to be extra safe. Have a great weekend!

Linda

Friday, March 25, 2005 12:53 AM CST

This week has flown by. The kids are doing great. They both love to "help" Chris was trying to sweep the kitchen floor the other day and Breanna likes to "help" throw away what she considers to be trash (cups, toys, etc). The other day the two of them were a marching band. My dad made Chris a drum out of a cookie tin and duck tape (even has a strap to go around his neck). Chris was marching down the hall playing the drum (with spoons) and Breanna is following dragging a toy dog by the string. Too cute. I'm going to update the picture page so check it out! Don't forget to sign the guest book and HAVE A HAPPY EASTER!

Linda

Tuesday, March 22, 2005 9:41 AM CST

168 days after transplant!

We had a great weekend. Josh's sister Sharla came to visit(she's on spring break). The kids love having someone else to play with and give them attention. We took her around and showed her the sites this weekend. We also rode bicycles this weekend and the kids still LOVE that. Yesterday afternoon we went out to the beach. Josh brought a soccer ball and the kids chased it around with him. We went to clinic yesterday and Chris' labs looked great. His skin is really dry and raw. We still have a week to go on the meds before he stops again so all we can do is moisturize.

Linda

Tuesday, March 15, 2005 8:53 AM CST

We had a great weekend. The weather has been great so we went out a got a bicycle trailer. We can put both children in it and tow them behind our bikes. The kids loved it! We went back to clinic yesterday and Chris's labs were great. We started round 4 of the accutane. The lower dose seemed to work very well last time so we are hoping for same results this time. We still have 2 more rounds to go and should be done by the end of May! We had Breanna's pictures done on Friday so hopefully I'll be able to post them soon.

HAVE A GREAT WEEK!

Linda

Monday, March 7, 2005 12:24 AM CST

We got the results from last weeks scans and ALL LOOKS GOOD!!! No sign of disease. We will do more scans in 3 months. We also did a hearing test and it showed possibly a 5 decibal loss for high tones. They were not concerned though. We had a great weekend and we don't have to go back to clinic until next Monday.

Linda

Wednesday, March 2, 2005 6:34 AM CST

Scans went good last Friday. They ended up testing his bone marrow also. It's a very painful procedure - they take a sliver of bone off his hip bone - so he was feeling sore for a couple days. We go in for MIBG today. They will inject him with a radioactive agent and scan 4 hours later and then have us come back tomorrow so they can scan at 24 hours. The 24 hr scan will be done under sedation so he won't be able to have his waffle for breakfast. Chris is in love with waffles right now and eats at least 2 a day. He likes them plain - not even butter. His hair is coming in fast and very dark. Maybe now people won't think he and Breanna are twins. :) She's still bald though. She does have hair but it is very fine and very blonde. I can't believe how much she is talking. I was putting her to bed last night and she told me to open the door. It wasn't clear but for 14 months thats pretty good. Have a good day and keep happy thoughts for us on our scans. Hopefully we will get the results from Fridays scans today.

Linda

Wednesday, February 23, 2005 1:02 PM CST

Day 140

So far this cycle of Accutane has gone better. His skin is starting to get really dry again, but we only have 4 more days to go. When we were in clinic his labs looked greated. Calcium hadn't gone up any and liver enzymes were almost normal. Chris was so cute Monday at clinic. He caught himself in the mirror and tells me "My hairs growing back in. I see it in the mirror!" It was too funny. Also on the way home I had put the windows down when we first got in the car, as I started to drive I went to put them back up and he's screaming at me not to do it. His hair was blowing in the wind and he thought it was too cool!
We go back in for scans on Friday. We are going to have the CT/MRI/bone scan. We also have the MIBG scan scheduled for next week. Say a prayer for clean scans!

Linda

Friday, February 18, 2005 8:06 AM CST

This has been another busy week. I have been in training at work all week and Josh has a deadline at work and has been working OT also. Yesterday Chris had to go back to clinic so Grandma and Uncle Tommy took him. Of course he loved that. Not only did he get to see his favorite nurses he got "Ne-Ne" and "Mickel Tommy". His counts are doing better. His liver enzymes are now almost normal. He's been on cycle 3 of Accutane for 5 days now and everything is going great. They reduced his dose from 100mg a day to 70mg and we are hoping that his calcium won't get so elevated this time. Have a good weekend!

Linda

Thursday, February 10, 2005 11:45 AM CST

Day +128

What a week! We went to clinic on monday and Chris vomitted in the car on the way. They got back his labs and his glucose was 44. Normal blood sugar is 80. He had been constipated (again from the meds) and hadn't eaten much on Sunday. Since he didn't eat his blood sugar dropped which is probably why his glucose was so low. They gave him dextrose in his IV fluids to get it back up and held off on starting his accutane until Weds. Monday when I got home from clinic I came down with the stomach flu. I tried to stay away from the kids and wear a mask. Tuesday afternoon Josh came down with the flu and Tuesday night Chris vomitted again. Wednesday we went back to clinic and his counts are down a little (still great though) and his liver enzymes are elevated. The dr said it's probably because his body is fighting off the stomach bug. We're holding off on starting the meds until next monday to give him a chance to fight off the contstipation and the stomach thing. I'm starting to feel better and luckily Breanna hasn't gotten sick yet. I just hope that we don't share this with Grandpa since he watches them during the day.

Tuesday, February 1, 2005 10:49 AM CST

Chris went to clinc today and everything was great! His wbc was 4900!!! Platelets were 200! and RBC were 11!! NORMAL!!! His calcium was were it was supposed to be and so what his potassium! He has recovered from the last dose of the accutane. We don't have to go back to clinic again until next Monday!! Of course we are going to start another round of accutane so then we will have to deal with that again. But we can relax for the rest of the week. Josh and I went to a Happy Days parents retreat this weekend. Happy Days is a support group for families of children with cancer. It was great to meet with other parents that have or are dealing with the same things we are. Have a great week!!

Linda

Monday, January 24, 2005 1:39 PM CST

Day +111

We had a very busy weekend. They finally let us go home Friday at about 4:30. His calcium was down a little. We did IV fluids at home for 12 hours each night and had a nurse come Saturday and Sunday to draw blood and send it to the lab. The extra fluids caused his potassium to go down too much so they changed the fluids from Sodium chloride to potassium chloride and made him take potassium chloride orally - its taste horrible! But it worked to keep his levels where they are supposed to be. They called us Saturday with his results and he was able to take his medicine on Sat pm and twice sunday. Now we are off it for 2 more weeks. We are going to continue the fluids for a couple more days - last time the calcium didn't get high until a couple days after we stopped the meds. We went to clinic today and everything still looks good. The fluids are definitely working. We go back on Weds to check his levels again. Thanks for the prayers and happy thoughts and keep them coming!

Linda

Friday, January 21, 2005 12:40 AM CST

Breanna's spots are mostly gone now. Chris' Xray on Tuesday just showed that he was constipated. Poor little guy ended up getting 2 enemas. We went back to clinic on Thursday to check on his levels. His calcium was way too high so they gave him some fluids to flush it out. We came back today and his counts were back up. With the calcium this high it can damage the heart valves so they are taking this seriously. We've been here all day and we're still waiting to see how they want to proceed. We may end up having to do IV fluids at home to keep the calcium down. We will probably also have to come back in this weekend to check the levels. Keep a happy thought for his calcium to go down. They know that its high because of his medicine... but he needs the medicine to make sure the cancer doesnt come back.

Linda

Tuesday, January 18, 2005 1:46 PM CST

105 days after transplant!!!!
We had a very busy weekend. Sunday morning Breanna woke up with a rash and the dr thinks its Scarlet Fever... She hasn't had a fever or been fussy so I'm not sure. We had to isolate her and Chris all day Sunday, Monday and most of today. We are at clinic right now with Chris and his counts look good. They did an XRay because he is still having alot of stomach pain/gas/constipation. I'll update later when we know more of what is going on.

Linda

Wednesday, January 12, 2005 10:29 AM CST

Day + 99
Tomorrow is 100 days after transplant! They consider this a milestone because the risk of getting some of the infections is less. We don't have to do scans again until March - I told the nurses on Monday to schedule them now so we don't have the same problem we did last time with scans late in the day and him having to not eat until mid afternoon. We started the second dose of Accutane on Monday. So far no problems. We go back to clinic tomorrow to check his labs - last time it caused his calcium to sky-rocket so they are going to keep a closer eye on it this time. His hair continues to grow back in. Its coming in dark and probably a half an inch now! With it being dark it looks like he has more hair than Breanna!! She's doing good. She loves to eat and likes to sit in her 'chair' ( a foam kiddie chair) and kicks her feet.

Linda

Thursday, January 6, 2005 10:28 AM CST

Day 93

We had a good weekend. Monday was Breanna's 1st Birthday and we had a party on Sunday. Chris enjoyed all of her toys and even shares them with her. She loved her cake and tried to eat it face first! I'll have to get some photo's up soon. She also went for her 1yr checkup yesterday. She now weighs 19 lbs 2 oz. She's in the 25th percentile for her weight, but the dr's are happy. Chris went to clinic on Monday and everything looked good. I don't have his counts with me but everything was good. Calcium back down where it was supposed to be and potassium up where it was supposed to. We go back on Monday and we start the second cycle of Accutane. We are doing good, but still trying to wind down from the stress of the holidays. The kids are still off schedule on there sleeping. Hope you all had a good weekend too!

Linda

Thursday, December 30, 2004 8:37 AM CST

Day +86
We had a wonderful Christmas. The kids got completely spoiled. Chris' favorite present is probably either a toy train set or his new drum set (he already managed to break it but it's still usable.) Breanna loves her new talking telephone and her new foam chair. Santa was really good to me and Josh also we got new pots and pans, dishes, a 1-cup coffee pot and some clothes. We went to clinic on Monday and Chris' calcium was high. This is a very rare side effect of the Accutane. They hooked him up to an IV and gave him some fluids. The extra calcium is normally flushed through the body in urine, so by hydrating him it makes it flush faster. They wanted him to come back on Tuesday to recheck it. On Tuesday his calcium was starting to come down, but his potassium was too low. They put him on some oral potassium medicine and told him to come back on Thursday to recheck it. Last night we ended up having to go to the ER b/c he tripped in the living room and cracked his head hard on the coffee table. It sounded horrible. He screamed for 3 mins and then was happy and playing. We called the dr on call to see if we needed to do anything and she had us go to the ER for a head scan b/c his platelets were a little low on Monday. The head scan came back clean with no internal bleeding so we finally got to go home at 11pm. It doesn't seem to be bothering him, but he does have a black and blue welt on his forehead.

I hope everyone had a very Happy Christmas and wish you all the best for 2005!

Linda

*Check out the past journal entries if you missed my Thank You post.

Tuesday, December 28, 2004 1:17 PM CST

As the year nears the end I want to take this opportunity to thank everyone that supported my family through our most difficult time. This year has been a roller coaster ride nightmare with its highs and lows. As you all know on April 15th my son was diagnosed with cancer. At that time we still didnt know what kind it was or how bad it was. We thought that was the worst day of our lives. The next day he had every scan imaginable - MRI of the brain, face and eyes, CT of the chest, abdomen and pelvis, bone scan, MIBG, GFR, bone marrow. We spent the night in the hospital on April 16th because they were still doing tests. This was his first night of many to be in the hospital and my first night away from my 3 month old daughter. Things just got worse that evening when we found out that he had Stage IV neuroblastoma - a very ugly form of cancer that is very hard to treat and likely to come back. Life immediately changed. Words cannot describe the feeling you get when you hear news like this. I am very thankful that my mother and a good friend were there with us when we got the news. I was so tense that night my daughter wouldnt even let me hold her. Chris was diagnosed on Friday and admitted to the hospital for treatment Sunday night. Next to come were 5 month of chemo, surgery, bone marrow transplant and radiation. From the very beginning I felt the love and support of friends, family and coworkers. You rallied together and donated leave hours so I could afford to take care of Chris. There were cookouts to raise money, meals donated, toys/cloths/diapers donated, cards and prayers - lots of prayers. The staff at the hospital told us that usually support for the families dwindles after 3 months. But you all stood behind me the whole way. On days that I couldnt take anymore I would get a phone call from someone telling me they were thinking about us. I would even get phone calls that started out You dont know me, but Im friends with It was very heartwarming to know that we were not alone and that others were thinking about us. We couldnt have done this without your support. When I felt like I didnt have the strength to go on, your support gave me the strength. Chris is now 2 ˝ . He is done with chemo and is doing great. His hair is starting to grow back and he is getting his energy back. We have a new definition of normal now that includes weekly visits to clinic, avoiding crowds and being hyper-sensitive to every cough and sneeze. Chris is a real trooper and doesnt see it as unusual. It will still be 2 years before he is considered recovered from the transplant and 5 years before they believe that the cancer is gone. I could never express just how grateful I am to each and every one of you, but I believe the kindness you have shown to me will find its way back to you.

Thank you and God Bless,

Linda Kee and Family

Wednesday, December 22, 2004 7:02 AM CST

Day +78
Good Morning! Things here are going great. We're running around trying to get all of the last-minute things done for Christmas. Chris went to the dr on Monday. Everything was good. His counts are down a little but still good (ANC-1000), it's normal for the counts to fluctuate a little and hopefully they will be back up next monday. We had our 1 month checkup with Radiation. It's hard to believe that it was only 1 month ago that we were still doing radiation. The doctor said he looks great. Breanna is still doing running around the house. She is getting more fond of table food than baby food and she is saying more words. Hope everyone has a very Merry Christmas and God Bless You All!

Tuesday, December 14, 2004 9:08 AM CST

70 Days after Transplant!

We had a good weekend. Chris got to go to church. He was so excited to "See Jesus" behind the alter. He also watched the ducks at the pond. We put our Christmas lights on the house this weekend and both of the kids seem to enjoy watching the lights. They are being much better with our tree then I ever expected. We've had it up for about a week and a half and they hardly mess with it. Breanna is learning a few words and she says them so clearly. She can say "Daddy", "doggy", "byebye" and "patacake". Chris went to clinic yesterday. His counts were great. We even get to stop one of his medicines. We started Accutane yesterday. That was interesting. We had to wait around for at least 2 hours for the pharmacy to have it ready. It comes in gelcaps so we have to poke a hole in it and squeeze all the medicine out - while wearing gloves. We mixed it with pudding and try and convince Chris that there is nothing funny going on with this spoonful of pudding. We get to do this twice a day for 2 weeks and then he gets 2 weeks off and then we start over again for 6 cycles. The doctor told me the only side effects we expect are really dry skin and lips and extreme sensitivity to the sunlight. I've got to go get him some heavy duty lotion and lip ointment and try to make sure he always has a hat on while outside. I'm sure we'll get used to this after a while and it won't be a big deal.

Tuesday, December 7, 2004 1:43 PM CST

Day 63 (63 days after Transplant!)
Chris went to clinic again yesterday. His platelets were 58! and RBC was 9.1, His ANC was 2400! The doctors are happy that his platelets are that high, he must be making his own again because the transfusion he got last monday would not have lasted this long. We got the results back on most of his scans. Everything was normal. No signs of disease!! We don't have to go back to clinic until next Monday when we start the Cis-Retinoic Acid. We do the CRA for 6 months. Its a pill-geltab that he takes twice a day for 2 weeks and then not for 2 weeks. Cis-Retinoic Acid is also known as Accutane - one of the drugs on the FDA's watch list. The dr's explained to me that it is also used to treat acne and that the dr's that prescribe it for acne don't watch for possible kidney problem. Accutane also causes severe birth defects if used by a women that gets pregnant - another reason for FDA scrutiny. We don't have to worry about him getting pregnant and we will check his kidney function weekly with a blood test. Accutane when used in cancer patients super-charges his white cells to seek-and-destroy/convert any microscopic cancer cells. I guess as an added benefit he will have clear skin. : )
It is so wonderful to know that we are done at least for now with the hectic schedule that we have known for the past 7 months. We couldn't of done this without the support of our friends and family... As a true indication of how much you care - this page has been viewed over 1000 times!!! Thank you all for your prayers and kind words.

Thursday, December 2, 2004 6:10 AM CST

Day +58
We are almost done with the scans. Tuesday was a terrible day we didnt get home from the hospital until 7pm. They were late calling him in for his CT/MRI scan, they didnt even start it until 2:30. They also decided it would be easier to do the bone marrow biopsy while he was in CT instead of today when he will be at the MIBG scan. He was asleep for at least 3 hours. He woke up very groggy and in a bit of pain. To check his bone marrow they take a sliver of bone off of the hip bone on both sides of his hips. It causes bruising and general discomfort for several days. After I asked about it they gave me some Tylenol with codeine to give him and that seems to help. Wednesdays scans werent as bad, at least he could eat all day. Today we go back for the second part of the MIBG scan. Todays scan will take a little longer so he cant eat again today because they are going to sedate him. He doesnt have to be there till 1 so this will be an interesting morning. So far the results that have come back look good. The MRI of his brain, face and eyes looked great. Keep a happy thought for us!

Tuesday, November 30, 2004 7:10 AM CST

Day +56
We had a good weekend. This is the week of horribly scheduled scans. Yesterday we had the GFR. It tests his kidneys. We were done with that by 12:30, but then we had to go back to clinic. His platelets were low again, so they transfused. The rest of his counts were GREAT! His WBC was 4900 and ANC was 2400 (normal wbc is 5000-10, and anc is 2000-4000) so for the first time in a long while his anc is normal!!! They think the platelets are low as a result of the radiation and that they should start recovering in a week or two. Today we have scans again. We go in at 10:30 for an injection (they inject him with a radioactive agent) and then the bone scan at 1:15. He then has CT scans at 1:30 and MRI at 2:30. They will put him to sleep for the CT and MRI so he is not allowed to eat all day until he wakes up at after the MRI. This will make for a very long day and of course it will mess up his nap time too. Keep a happy thought for us!

Friday, November 26, 2004 7:39 AM CST

Day +51!!!

Happy Thanksgiving! I hope everyone had a nice holiday. We had a great day. We had to go back to clinic on Wed. His counts were good. WBC is still on the rise, 2600, ANC-1500 and RBC 10. His platelets were up because we transfused on Monday, they were at 39. We also went and had an Audiogram (hearing test), EKG and an Echocardiogram done. His hearing is perfect. He is now done with all the drugs that could cause hearing loss so we think we're safe there. The EKG results looked good and we are still waiting to hear back on the Echo, but we don't expect any problems. The doctors said that since we are at day 50 we need to do all the tests and scans over again and see how he's doing. The hospital staff forgot that we had these scans coming up and had to schedule these at the last minute. Unfortunately for Chris this means that his scans will take 4 days to complete and he will be put to sleep twice. Both days it won't be until 1pm - and he's not allowed to eat until after the anesthesia. Needless to say I was a little irritated with this schedule and the fact that they were not on top of things. I had asked his doctor 2 weeks ago when we would be doing scans again and was told not for another 2 months. If they would have double-checked for me we would have been able to schedule it then and have gotten better times for the scans. Not much we can do about it now though. We watched the parade yesterday morning and Chris was so impressed by the Barney balloon and the Sponge Bob balloon. At one point he almost knocked Josh off his feet when he had to run past him so he could touch Barney on the tv. Breanna loved all the food she got to try.

Hope you all have a safe weekend!

Tuesday, November 23, 2004 9:03 AM CST

Day +49 (49 Days after Transplant!)

Chris is doing great. Last Thursday we took him to the Festival of Lights and he really enjoyed looking at all of the Christmas lights. Because there were not a lot of people there we were able to walk around "Santa's village" and take a ride on the train! He loved it. He is still talking about "Ride the train. Choo Choo". We had a good weekend and went back to clinic yesterday. His counts were good, WBC 2300, ANC 1300. His platelets were a little low, 25. They think this is a delayed reaction to the radiation. Normally they would wait until his platelets are below 20 to give them, but we got them yesterday because his port site wouldn't stop bleeding. Nothing real serious, just a good thing we were there. His is still feeling full of energy and he now has that mischevious sparkle back in his eyes. It is wonderful to see him doing so well.

Thursday, November 18, 2004 12:33 AM CST

Day +44 (44 days after transplant)

Chris is doing great today. Yesterday was our last day of radiation and he did great. The nurses all got him toys and books and he got his picture taken with them. We celebrated last night with cake and he loved it. This morning he woke up and didn't realize that we didn't have to go. He wanted his shoes on and "Nurses popsicle". I had to give him a popsicle with his breakfast. This afternoon my dad is watching Chris and Breanna while I went to work. It felt great to be back at work... I did have to clean out my cubicle. Our team had moved to a new location and everything that didn't have a place to go ended up in my area. We go back to clinic tomorrow morning so we should know more about how his levels look. I'm so glad that the majority of his treatments are over.

Monday, November 15, 2004 9:53 PM CST

Day +41
Happy Monday. We had a busy weekend. Josh woke up feeling terrible Saturday morning, went to the dr and was told he should stay away from Chris until Sunday after dinner. He had an infection in his throat. Luckily our family doctor now works a half day on Saturday. Josh ended up staying at the opposite end of the house from Chris and wearing a mask. Hes starting to feel better now. Breanna is walking all over the place. She walked 20 steps down the hall without holding onto the wall.
Radiation went good today. Only 2 days left! Chris counts looked better today. They still say that the radiation shouldnt make his counts go down, but they are always lower on Friday and recover again by Monday. His RBC was 9.9 and his platelets were 56. These are wonderful numbers. He hasnt had to have a transfusion in like 3 weeks. His white count is 2070 and his ANC is 1070. They want us to think about a clinical trial that he is eligible for. This trial randomly assigns the children to either get or not get immunotherapy. Immunotherapy works by placing a marker on any microscopic cancer cells and then burning them off. Because the cancer is in the nerve cells it causes severe nerve pain. They would do this in 6 cycles each lasting 21 days(just like the chemo). He would have to be inpatient for half the time. There are inconclusive reports over whether this is necessary or beneficial if the child does not have solid tumor mass left. I believe that if he did have a solid tumor left this would be beneficial. But Im not sure about putting him through all of that pain and the possible complication if they cannot show me that this is going to help him. Also MUSC has not done this procedure before. Were praying that we make the right decision. There is a real threat that he might relapse (first 2-3 years are the highest risk) but there is no proof that this clinical trial could benefit him. We still have a week to think about it.

Thursday, November 11, 2004 2:34 PM CST

Day 37
Radiation is still going good. Its definitely not hurting his appetite. Hes back to the old schedule of eating everything in sight from the time he wakes up until he goes to bed. He actually pushed a chair up against the counter to get to the cookie jar yesterday. Very cute, he was a little frustrated when he couldnt open the lid after all that work! Were looking forward to the weekend off and only 4 more days of radiation! With the thought of life going back to normal Im a little overwhelmed. Itll be great to go back to work, but Ill worry about him too. Thank you all for your wonderful support and prayers. We feel truly blessed.

Monday, November 8, 2004 7:41 PM CST

Day +34
We had a great weekend. It was nice to be able to have breakfast. Chris still has plenty of energy. The radiation nurses think he is too cute. He likes to repeat things they say like Hi Sweety. His counts are doing great. His platelets and RBCs have recovered. His white count was a little low last week but it recovered over this weekend. We are now 5 days into radiation with only 7 to go. Breanna took a couple more steps today. Shes getting so big. I cant believe she will be 1 in 7 weeks. It feels like the last year has flown by.

Thursday, November 4, 2004 1:37 PM CST

Day +30
Radiation went well yesterday. Chris still hasnt lost his appetite. He wakes up great from the anesthesia. He has a routine now, when he wakes up they get him a popsicle and some apple juice. Today is day 3 of radiation. Only 9 more to go! Its hard to believe that its already been 30 days since we had the transplant. In another 30 days we should be mostly done with treatment!

Tuesday, November 2, 2004 2:17 PM CST

Day +28
Radiation today went ok. Chris was upset that he couldnt eat breakfast, but at least now he has an appetite to know when he missed a meal. They were late calling Chris back because they had to make repairs to the anesthesia machine. It took longer today because its the first day. When he woke up in the recovery room he was ready to go. He wanted to go get food. Hes napping now, but I didnt really notice him to be having any fatigue. We probably wont see that for a few days. The most noticeable thing about the radiation is that he has marks all over his belly. They draw on his belly to make sure that he sits is the same position each time.

Miss you guys!

Monday, November 1, 2004 10:20 AM CST

Day +27
We get to go home today! His cultures from Saturday and Sunday have not come back positive yet. He is eating so much that they are going to stop the TPN! We will be on IV antibiotics thru Saturday. We start radiation tomorrow at 9:30. They expect that it might cause him to lose his appetite, but probably not for the first week. If needed we will restart the TPN for second week of radiation. We will do 12 doses of radiation, Monday thru Friday with Saturday and Sunday to rest. Radiation works just like a long X-Ray. The only side effects we really expect are for him to be tired and maybe lose his appetite. Chris is so excited to go home. He keeps telling me about his Spongebob table and his train books and his sissy and everything else that is at home. Thank you for your thoughts and prayers. Keep a happy thought for us tomorrow as we learn what to expect with radiation.

Sunday, October 31, 2004 6:44 PM CST

Day +26 (26 days after transplant)

Chris is in an excellent mood today. I spent last night and this morning with Breanna and when I came up to the hospital Chris was all giggles. He also ate continuously from 3:30 when I got here till now. He told me this evening Go home and go night-night. He is definitely ready to leave. His blood cultures from Friday came back positive for infection today. The sooner they come back positive the stronger the infection. His cultures from Saturday have not come back positive yet and if they dont come back positive tomorrow we can go home!! We had hoped that Fridays cultures would be negative today, but I guess it makes since that he would need more that 12 hours of antibiotics to make the cultures negative.
Breanna is doing good. Her Grandpa took her to the doctor on Friday for her 9 month check-up. She weighs 17lbs 10oz. She got a shot and did very well for Grandpa. She was very excited when she woke up this morning and I was there. She is still only taking 2 or 3 steps at a time.

Thank you for your prayers and HAPPY HALLOWEEN!

Friday, October 29, 2004 1:12 PM CDT

Day +24
Chris is doing much better this morning. He was not impressed last night when the nurse came in to take his blood pressure at midnight and 4am. But he woke up in a great mood at about 8:30. He ate breakfast and lunch and played and laughed. He hasnt had a fever since last night. His blood cultures came back positive for a line infection. This is probably the most common type of infection to get with a weakened immune system. Because his IV line has remained accessed it provides a way for bacteria to get in. This is one of the reasons we wanted the broviac line removed before we left the hospital they get infections much faster than the port-a-cath that he has does. The other issue is that he is still on TPN(IV food). The IV food is high in sugar and therefore can cause infections. Its good to know what caused the fever. Now we will know when he has a blood culture come back negative that the infection was treated. We will be in the hospital until he has negative cultures for 48hrs and of course no fever. Thanks for all the happy thoughts!

I want to send a special Thank You out to everyone who organized, cooked and attended the EMA cookout for us. Its wonderful to know that people still care. I feel very lucky to work with such great people and for such a wonderful company. THANKS!

Thursday, October 28, 2004 9:00 PM CDT

Day +23
Were back in the hospital. When Chris woke up this morning he felt hot. I took his temperature and it was 101. I called and left a message with the dr. An hour later I took it again and it was 102.4 under his arm which means 103.4. I called the dr back and they had us come in to clinic. They started him on IV antibiotics, drew blood cultures and admitted him to the hospital. By mid afternoon he was finally feeling better, he was laughing and eating. Hes sleeping peacefully now. The doctors say we will be here until he is fever free for 48 hours. Its possible he picked up a cold and with his weakened immune system his body responds with a fever. The doctors said before we were discharged last time that it is not unusual to be readmitted with a fever. Even knowing that, it was a very scary morning. He definitely needs us to keep him in our thoughts and prayers.

I want to say thank you to the anonymous Special Friend that gave Chris the Tigger and the goodie bag. Every morning he points Tigger out to me (Its sitting on his bicycle in his room) and says Morning Tigger. Thank You, he really enjoys it.

Wednesday, October 27, 2004 6:45 AM CDT

Day +22
Clinic went good on Monday. His counts were good. His platelets were a little low, but they wanted to wait to see how fast they would drop. We go back to clinic today and Im sure hes going to get platelets. Today at clinic the nurses are dressing up for Halloween. They are all going to be Old McDonald and his farm animals. Im sure Chris is going to love it. Chris is still eating more. He loves Krispy Kreme donuts. I thought he just loved donuts until I got some fresh donuts from Wal-mart and he refused to eat them. He is also learning to count now, and always asks for Two donuts. Thank you all for the continued thoughts and prayers. Its encouraging to know we are not alone.

Monday, October 25, 2004 6:39 AM CDT

Day +20
Happy Monday. We went to clinic on Friday and his counts were great. I think his WBC was like 6000. We expected it to drop back to a normal level once we stopped the GCSF, so that great. His platelets and RBC was good too. They told us that we cant start radiation today. His treatment plan calls for radiation to start between day +28 and day+44. Even though he looks like hes recovered so quickly they want to give his body another week to recover. We will start radiation on next Tuesday, Nov 5. Chris appetite picked up all weekend. Hes still not eating half what he used to but he always has food near him. Anywhere he goes in the house he takes his ziplock bag of Nemo cereal with him. We go back to clinic this morning. Ill update this afternoon on how it goes..

Thursday, October 21, 2004 3:23 PM CDT

Day +16
Were HOME!!! I ended up going to the dr on Tuesday with a sinus infection. Luckily its not contagious. Tuesday Chris had a good day with his Dad. They went to the playroom and he even ate a little. Wednesday we were discharged. First we had to go for his CT scan for Radiation. That went very well and we were able to meet everyone that will be doing the treatments. Chris was so excited to be home. Breanna was even more excited to have her playmate back. She walked right up to him (holding onto the side of the coach) and hugged him. He did get mad at her when she went for his Nemo cereal though! The home health nurse came and showed me how to do his IV food last night. It runs for 12 hours overnight. Chris actually slept ok last night. He sat in the crib awake until about midnight, but he slept until about 10. Today has gone pretty good. He ate a little for breakfast/lunch and is napping now. We go to clinic tomorrow to check his levels and on Monday we start radiation. I didnt think we would start this soon, but they wanted to get started. Thank you all for your prayers. It is so wonderful to home.

Monday, October 18, 2004 7:59 PM CDT

Day +13
Chris is doing so much better! His mouth sores are still improving. He got off the coach and walked around the room today. We got to go to the playroom and he really enjoyed that. They stopped the last antibiotic today! So far no fevers! They stopped his GCSF because his counts are still excellent. WBC 17600 (normal 5-11000) and his ANC 11968 (normal 2-6000). Now that they have stopped the GCSF his counts will probably drop a little, but they will still stay in the normal range. Everything is still working out for us to go home Weds after his CT scan. He will most likely go home on IV food, but probably just for 12 hours a day at night. Thanks for all your prayers.

Sunday, October 17, 2004 4:44 PM CDT

Day +12
Chris counts are still going up! He got to go to the playroom yesterday for down time! He is still a little unsteady on his feet, but he hasnt walked much in over a week. They are cutting his TPN (IV food) down to only 12 hours a day. His mouth sores are still improving but they are slow to heal. He is only on 1 antibiotic now. He is also taking his mouthwash like a champ and taking his anti-fungal medicine orally! The anti-fungal helps prevent fungal infections. Chris didnt need any platelets Saturday but had to get them again this morning. We were going to go to the playroom again today but there was a communication error and we didnt get to go Hopefully they will let him go for a walk this evening though. When the counts get high enough the kids can walk around the floor (in the evening when there arent as many people here) as long as they wear mask and gloves. Chris is still on GCSF, a medicine that causes his white count to increase. They use this to help the children recover counts faster. It has caused his counts to be really high but Im not sure if they are going to cut it back a little or let the counts be high. Even though his counts are high we still have to wear mask and gloves in his room. This morning his WBC was 13,600 (normal is 5000-11000) and his ANC was 9520 (normal 2000-6000). The doctors are very impressed with these numbers. Now they want him to try and eat and drink a little more. After explaining to him that if he eats and drinks we can go home he drank some tea and is working on a lollipop. They cut his morphine off completely and we can get it if he acts like he is in pain. So far weve only had to do that once today. Keep up the prayers, I watch the power of them in his progress every day. We still have to be careful, even though his counts are up his infection fighting ability will still be down for some time.

Friday, October 15, 2004 11:10 AM CDT

Day +10 After Transplant
Chris counts look great today! His WBC is 1640 and his ANC is 754!!! Chris got platelets late last night and his count was 36 this morning, but they are rechecking it because he had a nose bleed. He will get down time in the playroom if his counts stay up. Down time is when they allow any children on isolation to go and play in the playroom. Only children on isolation are allowed in at that time and they clean all the toys before they let them in. He will have to wear a mask and gloves, but at least he gets out of his room. They are cutting back on one of his antibiotics today and plan to cut back on 1 a day as long as he doesnt spike a fever. They have scheduled his CT scan for Wednesday morning and assuming his counts keep up he should be able to go home after the scan!!! They will want him to be taking all of his medicine by mouth and for his ANC to be over 2000 for 3 days I believe.
The doctor said the important thing to remember is that even though his counts will look like a normal persons, his immune system is still brand new. Its like when a child is in daycare for the first time and they have so many infections as they are exposed to all the germs from the other kids. After a while they have already been exposed to all of those germs and there body has produced antibodies for them so they dont get sick from those germs, or they dont get as sick. Chris immune system has not been exposed to anything so we will have to be careful. They say it takes 2 years for his immune system to fully recover. He will also have to get all of his immunizations again. This is such an amazing thing that his body is doing right now. I can understand why he is still so tired. His body is working so hard to recover . GROW CELLS GROW!!!

Thursday, October 14, 2004 7:56 PM CDT

Day +9

Chris is feeling tired today. He was up most of the day yesterday and was up late last night. He is still feeling better today and his counts are up again! WBC is 626 and ANC is 120! His platelets were 25 this morning so they are going to check it again at 6 and see if its dropped any lower. They will do a CT scan on Monday or Tuesday to see if they can take him off of some of the antibiotics. So far no fevers today. Grow Cells Grow!

Weve also got some more news. Breanna took her first steps this evening!! Josh was there to see it . She has been cruising around the coffee table for weeks so we were expecting it. Im disappointed to miss it, but at least Ill get to see her on Saturday. My little girls growing up.

Wednesday, October 13, 2004 7:36 PM CDT

Day +8

Chris counts are still fluctuating but its more like two steps forward and one step back now instead of the other way around. This morning his wbc was 120, but this afternoon it was 505!!! He got platelets this afternoon. The chemo he got this round was really strong and causes him to be transfusion dependent until he body has recovered enough to start producing adequate quantities of red blood cells and platelets. Normally this will only take 2-3 weeks. Chris had a fever once today, but so far the cultures havent come back positive for infection. His mouth sores looked better this morning and hopefully if things keep going like this maybe we can convince him to eat tomorrow. He was still interested in food but not eating it. He wanted to see it and make sure we still had all of his favorites. We appreciate all of the support on the guest book and all the prayers! We are really watching a miracle as his immune system was completely wiped out a week ago and seeing a new one grow. This experience has really taught us to be thankful for the little things. Hug your babies a little tighter tonight they truly are a blessing.

Tuesday, October 12, 2004 3:35 PM CDT

Day +7

Chris got platelets first thing this morning because his count was so low (9, They transfuse if they get lower than 20). The doctor had great news though. His wbc was 68 and his anc 2. Also the white cells that usually first start coming back (the monocytes) were high, this indicates that his body is producing white cells and this is not just a fluke. They checked his levels again at about 2:30 to make sure his platelets had come up enough and his wbc was 199. The lab wasnt done determining what his anc was. This is wonderful news! Hopefully he should feel some relief from the mouth sores in 2 days and the doctor said that he should be able to go home early next week. That would be great! Chris still has a fever today so they added another antibiotic and drew cultures to see if there is an infection. The fever could be caused from his counts coming back in or from the mouthsores or even an infection, but they want to treat aggressively to make sure we dont miss anything. Keep sending those happy Cell Growth thoughts and prayers theyre working! Miss you guys!

Monday, October 11, 2004 3:50 PM CDT

Day +6

Today Chris got blood. His wbc was down again, so it must have been a fluke for it to be up. We do expect them to be up for real in 3 or 4 days. He does seem to be in a better mood overall though. He sat up for a little while this afternoon and inspected one of his toys. He is doing a good job with the mouthwash now but we do have trouble getting him to take Tylenol. He thinks he can spit it out like the mouthwash. Keep sending those happy Cell Growth thoughts and prayers.

Sunday, October 10, 2004 5:21 PM CDT

Day +5

He LAUGHED TODAY!!! I spent Saturday afternoon and Sunday morning with Breanna. When I showed up and traded places with Josh I brought in a bubble-gun we got for him. He sat right up and started laughing and talking about the bubbles. It was wonderful. He hasnt sat up, talked or laughed in at least 4 days. Today his WBC(white blood count) was 122 and his ANC was 55. This is up from yesterday, wbc-0, anc-9. Hopefully we are on an upward trend, but it is also possible that its just a fluke and his counts are fluctuating. They put him on the morphine pump today. He still gets the same dose of morphine, but instead of it wearing off every 4 hours, he gets a little continuously. Yesterday was a depressing day. He slept almost all day and was feeling pretty terrible. Its still a little early to expect that he is recovering, but it is possible so keep those prayers coming. Thank you all for wonderful support we have gotten. We couldnt do this without you!

Friday, October 8, 2004 9:54 AM CDT

Day +3

Chris is doing alright this morning. Yesterday was much like the day before. He slept off and on all day. When he was awake he wanted me to hold him. He did have a few spurts where he would talk and play. The doctors are still impressed by how well he is doing. The doctors are going to schedule the morphine today. He seemed to be more social after he got it. His mouth sores are causing so much pain that he really needs it to feel like doing anything but sleep. The doctors prescribed him some medicated lotion for his skin. It is getting very dry. All in all Chris is doing as expected. Thanks for all the prayers and support! We miss you guys.

Linda

Thursday, October 7, 2004 10:13 AM CDT

Day +2

Christopher had an ok day yesterday. His mouth sores have gotten worse. He only takes a few bites of food all day long. The doctors say that is normal and that it is good that he is taking even just a few bites. He is also getting all of his nutrition through the TPN (IV food). He got platelets yesterday because his count was low. He will probably get blood tomorrow. He spiked a fever yesterday afternoon so they started him on antibiotics. They did blood cultures and so far they have not come back positive for any infection. Usually the mouth sores will cause a fever but they always start antibiotics and do blood cultures just to be on the safe side. Aside from that he slept off and on for most of the day. He did enjoy watching Finding Nemo and his Thomas the Train movies. For now we are just waiting for his stem cells to work their way through his system and to the bone marrow and start growing more cells. We still have a week to go before the doctor expects to see new cell growth. Breanna is doing great with my father during the day and Josh at night. She eats like crazy and is keeping them both quite amused. Chris still talks about her and enjoys looking at pictures. Please keep him in your prayers as the next week will be the most difficult.

Linda

Wednesday, October 6, 2004 8:07 AM CDT

Day +1

Yesterday was a very busy day. In the morning we had to move all of Chris stuff into the new room. Everything had to be wiped with antibacterial wipes before it could go in the room. We finally did the transplant at 1:20pm. They brought up a syringe with 2oz of a purple liquid ( his stem cells). They gave the transplant over about 5 mins. There was definitely a unique smell to the process. The nurse told me its caused by the preservative they add to the cells. Apparently the older kids also complain of tasting it in there mouths, so they usually get sick. After transplant was done Chris was ready for a nap. We believe Chris had a mild reaction to the preservative because his heart rate was erratic. We had to wake him from his nap because he heart rate dropped to 81 bpm (it should be like 110 while sleeping). Waking him up helped raise the heart rate, but it didnt stabilize until about 5pm. He slept well last night. Now we are at the wait-and-see phase. Chris will get worse before he gets better. He should hit rock bottom in about 3 days and then itll be about 5 days before he starts to recover. Thanks for all the prayers, we can definitely see the impact. The nurses are still impressed at how well he is doing.

Monday, October 4, 2004 9:02 PM CDT

Day -1

Chris had a great day today. His counts are real low now but he seems to be feeling better. He was so playful. All I had to do was look at him to make him laugh. He is not as nauseaous, but he has lost most of his appetite. Tomorrow is the big day. After he wakes up we will give him a bath and unhook him from the IV pole. He will walk into the room, of course the nurses and I will put on our mask and gloves and they will hook him up to a IV pole they have in the isolation room. This ensures that we dont bring any germs in with the IV pole. We will have to wipe anything we bring into the room off with antibacterial wipes. At about 1 pm they will give him his stem cells. It goes thru the IV lines just like a blood transfusion. The major difference is the smell. Apparently everyone says the smell is terrible. Ive heard it described as tomato soup. I guess Ill find out then. I am very excited to finally be at this point. He cant recover from this round of chemo without this. Please keep us in your thoughts and prayers. Ill update in the afternoon to let you know how it went.

Linda

Sunday, October 3, 2004 9:11 PM CDT

Day -2

Well I got to spend most of the day with Breanna and it passed by too quickly. She is still getting into everything and she loves attention. She really enjoyed being the center of my attention for a few hours. I won't be able to see her for another 6 days now and that is definitely going to hard. When I got to the hospital Chris was doing great. The nausea seems to be getting better. He is eating a little more than he has been but still not much. They are talking about starting him on the IV food tomorrow. Tomorrow we have to get everything ready for transplant. All of his clothes have to be washed and dried on the hotest setting and then placed in ziplock bags. This is supposed to help keep all the germs off his clothes until they get in the transplant room. They cleaned the transplant room today and have it roped off. Now they are letting the high-power air filters finish the job. They take cleaning the room very seriously. The man goes in and cleans everything wearing mask, gloves and gown. Please keep us in your prayers as we get adjusted to our new 'routine'. Hopefully Breanna won't keep Josh up all night.

Saturday, October 2, 2004 2:08 PM CDT

Day -3

Yesterday flew by. We had some friends come by and Breanna was visited for a little while. Chris appetite is still shrienking but he still won't turn down Yogurt. Today is going a little better. They have got his naseau meds scheduled a little better so they are not all wearing off at the same time. He counts are a little lower than yesterday. They had to give him phosphorus today, apparently when the kidney is under additional stress from the chemo they have to watch the phosphorus levels. He slept in late this morning (10:30) and is napping now. He was able to eat some eggs and bread from breakfast (his favorite). Josh is going to spend the night with Chris tonight and I will get to enjoy 1 last night with my daughter before we go in to isolation. I know this transplant is going to be hard on all of us, but I feel bad for her because she will get less attention because Chris needs me more. My father will be watching her and I'm sure she'll get plenty of attention from him. I also have a strong suspicion that she is going to start walking while we are in for transplant. She has been pulling up on the furniture and cruising for the last 5 weeks. Thank you all for the kind words and support you have expressed.

Linda

Thursday, September 30, 2004 12:58 AM CDT

Day -5

Chris is starting to feel the side effects of the chemo now. He seems to tire easier, although when he's awake he plays full force. He's also starting to get nauseous. We changed his nausea medicine today and hopefully that will help. His counts have also started to go down, they are not at all low or neutrapenic yet, but they have started to dip. He got the last dose of the one chemo drug today (Melphanel) and he has one more dose of the etoposide/carboplatin tomorrow. The doctors say everything is as expected. We trying to get prepared mentally to be in isolation and take Chris for as many walks around the hall as he wants while he is still allowed to. Thanks for the continued thoughts and prayers. I'm really greatful to have friends like you.

Linda

Wednesday, September 29, 2004 1:26 PM CDT

Day -6

Chris is doing great today. So far no side effects from the chemo. He's still on antibiotics to prevent infections and a baking soda mouthwash to prevent mouth sores. He's still got a great appetite and full of energy. I met with the radiation doctor yesterday and Chris will get 12 doses of radiation(1 a day M-F) starting around about day + 30. He said Neuroblastoma responds very well to radiation, so well that they don't even have to use a high dose. He said the cancer cells seem to 'melt away' with the radiation. He said that Chris shouldn't have too many side effects from the radiation because its only a small dose. Thanks for all the continued prayers. We will definitely need them for the next couple of weeks.

Just to give everyone an idea of how the transplant works...
We were admitted on day -9 (9 days before transplant) They started chemo on day -7, and he will continue to recieve it through day -4. After that he will get 3 days to rest. They give a very strong dose of chemo to destroy any remaining cancer cells. A side effect of this strong dose is that it will also destroy his immune system. That is why on Day 1 they give him back his stem cells. (They were harvested in advance 3 months ago) It takes about 14 days for the stem cells to find there way to the bone marrow and start making cells. Until the new cells start going he will be very weak and at high risk for infections. That is why he will be placed in an isolation room at the hospital. Anyone that comes in the room will have to wear a face mask and gloves. They anticipate that he will be in isolation at the hospital for 3 weeks and then we will be discharged and he will be in isolation at home for 3 more weeks. When he's at home that means that he will have to wear a face mask and gloves any time he goes out. We are expecting to be home from the hospital by Halloween and out of isolation by Thanksgiving.

Tuesday, September 28, 2004 10:13 AM CDT

Day -7

So far we have had a rough start. We were admitted to the hospital Sunday night with surgery planned for Monday morning. Chris wasn't allowed to eat after midnight and wasn't called back to surgery until 11 am. The surgery was supposed to place a double lumen broviac (It's a central line with 2 tips - it's like 2 IV's that are hooked into a vein leading to the heart). Unfortunately when he came out of surgery he only had a single lumen. By the time it was discovered that he did indeed have to have a double, he had just received lunch and was 4 bites into his chocolate ice cream and we had to take it away. He was not impressed. The doctors decided to repeat the surgery Monday night (they had to wait 6 hours for the little bit of food he ate to be digested). This meant that Chris had to go almost all day without eating. Not an easy task. It was 9:30 pm before they called him back for surgery. This time surgery went great. Poor little guy didn't get back to his room until midnight though. Luckily today has gone much smoother. He was able to eat breakfast! We are about to start the chemo so hopefully there won't be any bad reactions.

Tuesday, September 28, 2004 9:52 AM CDT

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----