North Carolina Bound

What a difference a year makes!  Today, a year ago, we were celebrating Easter several weeks early as Cameron was due to go for his second stem cell transplant.  Our eyes filled with tears as we watched our sick, bald little boy hunting for Easter eggs with his brother.  So much joy in such a simple tradition!  Cameron loved hunting for eggs so much, in fact, that we spent almost every day for the next two months, hiding eggs around the transplant unit of the hospital - it was one of the only ways we could get Cameron out of bed to exercise his lungs.

This Easter was quite different, we were far more relaxed as Cameron and James dashed around the back yard hunting for their eggs.  What a joy to have a normal occasion, without worrying about Cameron damaging his central line or scraping his knee and needing to go to the ER because of a low platelet count - they were just two normal, happy little boys, doing exactly what they should have been doing on Easter.

Since Cameron's scans, we have really enjoyed the time away from the hospital, being a normal family.  We have definitely started to relax slightly and let the boys enjoy as many experiences as possible, without the constant worry of germs and injury.  Of course, at the back of our minds, we are still always worried that this dreaded cancer will rear it's ugly head once more, we are very aware (borderline paranoid) about any aches and pains that Cameron complains of.  Is he sleeping too much / enough?  Is he tiring too quickly?  Is he eating enough?  Where did that bruise come from?  Sometimes I feel like I am becoming one of those "helicopter parents" that I swore I would never become!

It is because of our ongoing paranoia, that when Cameron started complaining of headaches about a month ago, we went into panic mode!  Has his cancer returned?  Is it in his brain now?  I know it sounds silly, but I think we are so worried that we will miss a sign of the cancer's return, that we are extra vigilant.  So, we decided to request a urine test for HMA/VMA Catecholamines. The urine levels came back slightly elevated!  COMPLETE PANIC!  To put it in perspective, normal Catecholamine urine levels are 13.5 or lower.  At diagnosis, Cameron's were over 300, the latest test came back at 19.7.  Obviously, it's not a HUGE jump from the normal range, but the fact that it was increasing slowly with every urine test (it went from 13.5 to 16.1 to 19.7), gave us all slight cause for concern.  The main problem with this type of urine test is that there are many dietary factors that can influence the result and give a false positive.  We decided to take Cameron off of his formula supplement again and switch him to organic whole milk, and we followed the suggested dietary limitations as closely as possible, and then retested him after two weeks - the result?  A one point drop to 18.7!  Well, that doesn't exactly make me feel relaxed!  The doctors, however, did not seem concerned and said that they would retest him again in four weeks, as originally scheduled.

When we got to the end of Cameron's treatment, we discovered that there are not many long term treatment options to prevent relapse.  Since Cameron had had a good response to the chemotherapy, radiation and antibody therapy, there wasn't much left to do except continue to monitor him closely for the next two years.  I wasn't entirely happy with the idea of sitting around and waiting for scans every three months and just letting things be.  I had read about a study that was being conducted in Michigan that was looking into a drug that may help prevent relapse in Neuroblastoma patients.  The elevated urine levels led us to revisit all options. Frank and I took a closer look at the new trial.  The study requires patients to be no more than 120 days out of treatment, so we had very limited time to make a decision.  We did as much research as we could and spoke to the doctor conducting the study as well as the parents of children already enrolled in the study.  The drug has already been proven successful in preventing relapse in adult colon cancer patients and has minimal side effects, he would not be exposed to any more scans than he would if he wasn't on the study (the study requires him to have scans every three months, but results can be shared with his primary oncologist), he would  take 2 pills twice a day and limit certain foods. We can remove Cameron from the study at any point.  We have decided to go for it, given the potential benefits and the abscence of any severe or permanent side effects.

Luckily, a hospital in Charlotte, North Carolina is participating in the study, we are only about 4 hours drive away, so it makes more sense to go there than travel to Michigan every few months.  Tomorrow, the boys and I will head up there to meet with the doctor and over the next few days Cameron will have scans done to make sure that he is eligible to participate in the study (he will need to be cancer free).   I am also relieved that he will have scans this week, with his urine not being perfect at the last test, it would be reassuring to know where we stand. 

I am a bit nervous about driving there on my own with both children, but I am sure that once we get there, we will be fine and even try to include some fun activities in between our hospital visits.  A friend, whose son also has Neuroblastoma, will be travelling up to North Carolina this week too, also to enrol in the study.  It will be great to have company, and since our children are all the same age, it should be fun for them too - poor North Carolina isn't going to know what hit it!

First Post Treatment Scan Results

It's been an incredibly stressful two weeks!!  Cameron had to have a range of tests and scans over the past two weeks to determine whether he is cancer free.  Even though he has only just completed treatment, Neuroblastoma is known to relapse - it's the nature of this beast!  Thankfully, all of his scans have come back clear of Neuroblastoma cells!  We are still waiting for the results of the bone marrow aspiration and the urine analysis, but we are quietly confident that those will come back clear too.  He will continue to be rescanned every 3 months for the next two years and will see his oncologist once a month. 

Beside the stress of the actual scans, I was extremely worried about how I would cope taking both boys to the hospital with me - in the past, our dear friend, Leigh would watch James or we had my mom here or our awesome nanny, Ana, to help out with weeks like these.  Unfortunately, January is a busy month for everyone and all of our scans conflicted with the calendars of all the people who usually help us.  So I was on my own, with two potty training, busy toddlers.  Much to my surprise, it all went very smoothly.  James was an absolute star!!  He told me when he needed to use the potty, he sat quietly and watched videos while the nurses worked on Cameron, he never complained!  James is by nature a relaxed child, but I wasn't sure how he would cope with hearing Cameron cry when they put the IV in or how he would keep himself occupied for 5 or 6 hours while we waited around.  Cameron, as usual, took everything in his stride.  He is such an amazingly strong little boy.  He allowed the nurses to put the IV in with minimal fuss and played happily with the Child Life Specialist's iPad until it was time to go through for his scan.  He drank all of his contrast (a medicine that allows the cancer to show up on the scan) without complaining and was just an all round star!

I continue to be inspired by these two little people!  Cameron's strength and James' calm, patient demeanour leave me awestruck and I am thankful for everyday that I get to spend with these amazing children of mine!

This is truly a remarkable milestone, we have moved through the treatment stage to monitoring. We really appreciate all of the support we have received over the last 16 months. From an amazing medical team of doctors, nurses and technicians at Childrens Healthcare of Atlanta to all of our family, friends, neighbours and colleaugues both near and far who have gone above and beyond to help us. From help with caring for James when our energy and time were spread so thin, to the meals and financial support that arrived when we needed it the most, and to the countless gifts and messages of encouragement from across the street and around the world that have kept us filled with hope. Thank you to everyone of you. You will never know how much you have touched our lives.

  

Christmas, New Year and Everything Inbetween!

 

What a joy it has been to be out of the hospital for such an extended period of time. We have been keeping ourselves very busy, as usual, and we made a special effort to make the holiday season very exciting for the boys. They are finally at an age where they can understand some of what Christmas is about - they are both VERY into Santa Claus and snow and reindeer. It's such a fun age!

We kicked off our festive season with Cameron taking a trip to the North Pole! Delta and Aflac Cancer Center kindly organized the most fabulous experience for their patients. The Cameron and Frank were picked up in a limousine and taken in convoy to the airport with a police escort. On arrival at the airport, they had their own private check-in desk and were given real tickets and boarding passes. They boarded a jet and "flew at the speed of light" to the North Pole (the plane taxied around the airport for an hour and arrived at a different gate). Once they disembarked, they entered a winter wonderland! Of course, Santa and Mrs Claus were there, along with several of the elves. It was an absolutely incredible experience for Cameron, who now asks every time he sees an airplane, if Santa is on it.

Just before Christmas, we rented a small cabin in the North Carolina mountains, and headed up for a weekend break. The children were besides themselves with excitement when we arrived and they realized that it had been snowing! We spent hours playing in the snow and Cameron enjoyed a soak in the jacuzzi to warm up. They were fascinated with the fireplace and loved warming their little hands up in front of the stove.

The snow was short lived, by the time we got up the next morning it had all melted, so we headed into town to ride the Polar Express! Some of you may have seen the movie, well, the train ride is made to be very similar. We enjoyed hot cocoa and cookies as we chugged along, singing Christmas Carols, until we reached Santa's house. Santa got on the train with us and handed out silver bells to all the children. The kids absolutely loved it!

We returned home on Christmas Eve and began the mad rush of getting presents wrapped and under the tree. We had a quiet Christmas at home this year, celebrated with some friends. We missed being with our families, but we made the most of the time together!

December 26th marked the first day of the dreaded potty training. We had left it for as long as we possibly could, and with the boys returning to school early in January, we really needed to get going and get these boys out of diapers. The first day was insane. Frank and I spent every waking moment watching the children like hawks. We honestly didn't let them out of our sight. We bought bribes, I mean rewards, and we stripped them down to just a shirt, and we waited. It wasn't a complete disaster, by the end of the first day, James had managed to pee on the potty. Cameron showed no interest at all and just peed wherever he was standing. As much as I think we would both have liked to throw in the towel after the first day, we persevered! By the end of the second day, both boys were using the potty consistently - as long as they were naked from the waist down. We are in our third week of training and the boys are slowly but surely getting the hang of it.

To round off our exciting Christmas break, we took the kids to Snow Mountain. Snow Mountain is a type of theme park where they generate fake snow for a few weeks a year. We were kindly given four tickets by Cure Childhood Cancer. Of course the boys loved it! Cameron was too small to go on any of the bigger sledding/tube rides, but Frank and I took turns take James on the bigger slopes while the other stayed with Cameron and went on the smaller toddler tube rides. Even though we were cold Cameron just kept on going. The more I told him we needed to go and warm up, the more he begged to stay and play. Both boys thoroughly enjoyed themselves and we will definitely be back next year if we don't get any real snow!

This week, Cameron started his end of treatment scans. He had a CT scan on Monday and next week he will have an MIBG scan and bone marrow aspiration. To say that we are extremely anxious would be an understatement! We are so aware that Cameron's cancer could rear its ugly head at any time and the thought of it coming back makes me physically sick! Cameron will be scanned every 3 months initially and then at increasing intervals. I will post all the scan results next week as soon as we have met with Cameron's oncologist. We would appreciate your thoughts and prayers that Cameron has no evidence of disease.

Keeping us on our toes

Good old Cameron, always full of surprises for his poor, exhausted parents!
Just when we thought we had seen the last of the Children's Hospital for a while, Cameron had other plans.

Cameron has had a cough for a couple of weeks, I look him to see our pediatrician and she prescribed an antibiotic for a sinus infection that was causing a post-nasal drip and making him cough.  At that point, his lungs sounded clear.  Last week, after Cameron came home from preschool, I noticed that his ear was draining.  This is his forth ear infection in a couple of months, so off we went, back to the pediatrician.  As soon as we got into the doctor's office, Cameron started to run a low grade fever of 99.5 Fahrenheit (37.5 Celsius).  If Cameron's has a fever of 100.5 Fahrenheit (38 Celsius), we have to head straight to the emergency room, so I prepared myself to brave the rush hour traffic and make our way to the hospital.  A few minutes later, the nurse retook his temperature and it had shot up to 101.9 (38.8).  The doctor listened to his chest and heard an obvious crackling sound in his lungs, just to be safe, she put him on a monitor to check his oxygen saturation - it was 86%!  Cameron was given oxygen and the pediatrician called 911 - there was no way I could get Cameron to the hospital fast enough and he needed to be kept on oxygen until we got there. 

Of course, I had James with me at the pediatrician, and I was told that he wouldn't be allowed to ride in the ambulance with Cameron and I.  Once again, I had to call on the help of my dear friend Leigh - I honestly don't know what we would have done without this woman over the last year and a half.  She has cared for James so many times while Cameron has been in hospital, she is an absolute godsend!  Leigh came to the rescue and picked James up from the pediatrician's office and Cameron and I hopped into the Ambulance.  About 2 minutes into our trip, the EMT informed me that he couldn't get the oxygen monitor to work - Cameron was getting oxygen, but there was no way to tell if he was getting enough and what his oxygen saturation was.  FANTASTIC!  I suggested that this might be a good time to put the sirens on and get us to CHOA (Children's Hospital of Atlanta) as quickly as possible!  Because we couldn't monitor Cameron's vitals, we tried to keep him awake and made him talk to us.  The EMT asked him several times if he was OK, to which he replied every time with "Yes, I OK"!

Once we got to the hospital, he was given a breathing treatment and he stabilized quickly.  Antibiotics were started and x-rays were taken.  It was confirmed that he had pneumonia and he was admitted to the Aflac Cancer Unit.

After a good night's rest, Cameron was up and his usual cheerful self.  He was able to keep his oxygen saturation above 96% without help and even showed some interest in eating and drinking.  His labs showed that he had bacterial pneumonia, which is not contagious.  He bounced back remarkably quickly and only had to stay in hospital for 3 days.  Cameron's overall immune system was tested, while he was there.  It didn't come as a huge surprise that his immune system is on the low side, so he will be given a treatment called IVIG therapy once a month from now on and he will be retested in 6 months to see if it has been effective.

Before we were discharged from the hospital, Cameron got an opportunity to have a video chat with Santa.  It was absolutely adorable.  Santa was told Cameron's name and age in advance, so when Cameron heard Santa say his name - he was amazed.  Santa Claus then said to Cameron, "Now, Cameron, I believe you are three years old".  To which Cameron replied, in a mildly irritated voice, "No, James is three - I am TEN!!"  Poor Santa, Cameron is difficult to argue with! 

Cameron is still on antibiotics, but he is well and truly on the mend!  Let's hope we don't have anymore excitement until AFTER Christmas!

Final Round of Treatment

Let me start by apologising for how long it's taken me to type up this blog post! 

I guess I can't quite wrap my head around the fact that, after 15 months of being in and out of hospital every few weeks, Cameron has completed his final inpatient treatment.  It's bizarre! It's surreal!  It's completely terrifying!

Cameron's fifth round of treatment was a difficult one, certainly not the worst we have experienced, but he had a lot of pain and he threw up several times - which was unusual.  I felt like we were going through chemotherapy all over again with the amount of yukky laundry that I had to do!  Despite the pain, nausea and the fact that he required oxygen again - he pushed through it and was able to complete his treatment, becoming the first child in Atlanta to receive a full dose of Antibody Therapy at the fastest rate.  Quite an achievement, I am so incredibly proud of him - his strength and tenacity is awe-inspiring to Frank and I.

Our final day in the hospital was an extremely emotional one for me.  People kept asking me if I was excited that Cameron's treatment was over, and every time they asked, I burst into tears.  Those of you that know me, know that I don't cry easily.  I try to keep my emotions in check, especially around Cameron and James, but I just couldn't control it that day.  The truth is that, of course I am thrilled that my baby won't have to go through the terrible suffering that these treatments cause him, I'm ecstatic that he has been able to get all of his treatment with minimal complications, but at the same time there is the overwhelming fear that this horrendous disease could come back.  The thought of not actively fighting this cancer, just sitting around waiting for Cameron to be scanned every 3 months, waiting to hear if my beautiful boy has relapsed, fills me with absolute terror and dread.  So no, I really wasn't excited that his treatment was complete, if it were up to me I would give him chemotherapy once a month, forever - just to keep this cancer away from my child.

A couple of days after Cameron came home from hospital, he went back in to have his CVL (Central Venous Line) removed.  Now that's something that I definitely won't miss!  Cameron has been very fortunate that he has only ever had one central line, it's very common in children - especially of this age - that the line has to be replaced at least once.  The lines get infected or the kids pull them out or damage them and they need to be replaced, but for some reason we got lucky and Cameron had the same one for his entire treatment.  Of course, the fact that he had had the same one for so long, meant that all of the original sutures/stitches had come loose and there was nothing holding it in place.  A firm tug and that line would have been out.  Nerve wracking when you have a very active 3 year old and his inquisitive twin.  I am still not used to the fact that it's not there anymore - I still feel for it when I pick him up and I still worry about it, for a split second, anytime he climbs anything or falls over.  When I ask Cameron where his "tubes" are, he still points to his chest, when I tell him that they are not there anymore, he looks at me like I have lost my mind!

Cameron will go in for scans in early January.  In the mean time we are  adjusting to being a "normal" family.  We will put our Christmas tree up this weekend and have Santa photos taken (without a hospital backdrop), we will decorate gingerbread houses and start our family Christmas traditions, we will start potty training, and most importantly, we will make the most of every second that we are home together as a family!

What a week!

Wow!  What a week it has been!

My mom has come over for a visit and we are so delighted to have her here.  James and Cameron ADORE their Grandma and Cameron insists on sleeping with her every night.  Poor Grandma is going to need a proper vacation when she leaves here.

We started the week by going pumpkin picking on Sunday.  It was FREEZING, but that didn't stop the boys from enjoying a hayride and marvelling at all the giant pumpkins.  After the hayride, we grabbed a pumpkin and dashed to the car to warm up. Next year, I think I'll check the weather report before we head out to higher elevations!

On Tuesday, we celebrated the boys' third birthday!  I still can't get over the fact that they are 3 years old already.  They are such big, independent boys and want to do everything for themselves - but it feels like just yesterday that I had these two tiny preemies, such long awaited miracles.  I don't often have time to reflect, but I took some time on Tuesday to think back to the day that they were born.  They were 7 weeks early, James was a healthy 5 pounds 4 ounces, but Cameron was only 2 pounds 9 ounces.  They were so fragile that they were whisked away as soon as they were born and were put into the high risk ICU.  I wasn't allowed to hold them, but I was able to touch James' tiny hand and change Cameron's diaper while he was in the incubator.  As many of you know, Cameron was born with a heart defect (he had open heart surgery when he was a year old to repair it), he needed oxygen after he was born and was too tiny to eat by himself.  James was able to come home after being in the NICU for 5 weeks, but Cameron had to stay for an extra two weeks. 

Those first few months at home with both boys, was the most difficult time of my life!  I wondered if I would EVER sleep again!  Three years later and I can't believe how far we have come!

Wednesday was Halloween.  Dressed as puppies, the boys headed out into the neighborhood with their friends, Paul and Chanel Grobler.  THEY LOVED IT!  Cameron shouted "knock knnnoooooocccckkkk" long before he even reach the doors and they could hardly believe all the fantastic treats that people were handing out.  Frank and I took the obligatory mom and dad tax and the kids are still munching on all their candy.

By Saturday, Frank, Grandma and I were exhausted from the week's festivities.  It took several cups of coffee to prepare us for the day ahead... the long awaited birthday party!
One of Grandma's gifts to the boys was a visit from a petting zoo at their party.  Well, they couldn't have asked for a better gift!  The kids were thoroughly entertained for the full hour and a half (in case you were wondering, no - we will NOT be getting a bunny for a pet!).
The theme of the party was Kipper the Dog, the boys' all time favorite animation.  I found a wonderful woman on Etsy who had PDF files of all the kipper characters and was able to personalize all kinds of things for me - from chocolate wrappers to thank you notes and all sorts of stuff in between.  I highly recommend her for you invitations and party decor!  You can find her at http://www.etsy.com/shop/pinkpeapaperie

The party was a huge success and James and Cameron loved every second of it.  As Grandma, Frank and I fell on the couch, exhausted, after the last guests left and we surveyed the enormous mess that still needed tidying up, we agreed that next year these kids are having a party at Chuck-E-Cheese or some other establishment away from home!

 

At the end of the party, not even the 10 pounds of sugar that these two consumed could keep them awake...

 

 

So, as you can see, we've had a crazy couple of weeks! 

 

Cameron is doing fantastically, he is due to go in for his last hospitalization on Monday, November 12th, for a week.  I can't believe that this is his last scheduled hospital stay!  What on earth am I going to do with all this free time that I am going to have?

 

 

 



 

 



 

 

 

 



Round 4

Cameron has completed his 4th round of treatment! I am so glad that one's over!  Cameron had a really rough time this round.

The week before Cameron was admitted, he had a severe ear infection, he was put on antibiotics and the infection cleared up and we were able to begin treatment on time.

The first week of treatment was relatively easy.  No major side effects or incidents, it just ticked by and Cameron and I spent our time playing in the Aflac playroom and watching Blues Clues for the 50 000th time.  He had some minor issues with the dressing on this central line (CVL), but the dressing had been changed twice that week and the skin underneath looked normal. As we approached the end of the first week, it looked as though Cameron's ear infection had flared up and he was started on the antibiotics again, but he was discharged by Friday with instructions for him to see our regular pediatrician the following day, for another dose of the antibiotic.  By the time we got to the pediatrician, I noticed that the skin under his central line was looking red and I could see what looked like a a bit of discharge.  The pediatrician took one look at it and sent us straight to the ER.  A central line goes through the chest, into the main artery - an infection can be very serious and if not caught in time, it can be life threatening.  Cameron was admitted back to hospital, after being home less than 24 hours - so much for our weekend break before the second week of treatment.

Cultures were taken from the line and from the surrounding skin, but thankfully nothing grew on the cultures and the skin settled down after a round of strong antibiotics.  Despite the drama, we were cleared to start his second week of treatment on time.

Cameron began his second week of treatment on Tuesday morning, he was given a large dose of morphine and put on a PCA but by the Tuesday afternoon his pain was already noticeable, and the PCA dose was increased.  At 3am on Wednesday morning, the nurse shook me awake and let me know that Cameron had not urinated in 13 hours and they felt that it was necessary to put in a catheter.  The catheter only got out a tiny amount of urine, so they decided to insert a Foley (like a catheter, but it stays in place and drains the bladder continuously).  The Foley did it's job and Cameron was able to empty his bladder. 

On Wednesday afternoon, the Foley fell out.  No problem, let's put in another one, right?  If only things were that easy!  The nurse tried to replace the Foley, but couldn't get it in, a second nurse tried, this time it went in to a point - but wouldn't come out.  When they finally got it out, we noticed that it was in fact defective and the little balloon at the end that it meant to keep it in place, had not completely deflated before it was removed.  If you are male and/or squeamish - you may want to stop reading now...  7 more attempts were made to insert a Foley, causing so much trauma that Cameron's urethra swelled shut.  Things were starting to get serious.  Cameron's bladder was extremely full, making it even more difficult to insert the Foley.  A nurse from the PICU was called in to try, as well as a nurse from the Rapid response Unit - but neither of them could get the Foley to go in.  As Cameron screamed in pain every time they tried to insert it, I was doing all I could to stop myself from losing it.

Finally, after 27 hours and 9 failed attempts, a urologist managed to insert a stent to open the urethra up enough to insert the Foley.  Once it was in, we guarded it with our lives to prevent a repeat of that ordeal. 

Despite the drama, Cameron continues to amaze us with his strength and tenacity!  He completed the treatment and was, once again, able to get the full dose of antibodies.  He was discharged on Sunday afternoon and is recovering well.

He is absolutely THRILLED to have his grandma here (as we all are) and has not left her side, he even insists on sleeping with her every night.  We can't wait to celebrate the boy's third birthday next week and count our blessings everyday that we get to spend together as a family.