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.

A long year

Cameron completed his first week of the 4th cycle of antibody therapy and was released from Scottish Rite in time to catch the trunk or treat event with James at St Benedicts on Friday afternoon (a version of trick or treating from people's car trunks). By all accounts his first week went well and he had looked ready to go into the second week on all cylinders. That was until today when Nikki took him to our pediatrician for an antibiotic shot and pointed out a concern that she had about his central line. Our pediatrician sent her and Cameron  to the emergency room where he has been admitted with a suspected central line infection. Cultures have been drawn and we will know whether he can proceed with week two on Monday.

I have been playing the Mr Mom role with Jamie while Nikki and Cam have been at the hospital. It is amazing how much work goes into running a household with just one child, I honestly don't know how Nikki does it with two. I'm sure Jamie can't wait to get Mom back in charge, my school lunches are horrible. Thank you to our friend Leigh for helping with the school runs.

Two weeks ago we were very fortunate to be invited to Camp Sunshine which is held at Twin Lakes in Rutledge GA. We got to experience our first American camp as a family and to spend time with other families that share our journey. The boys absolutely loved all the activity, from learning to play Indian drums to catching their first fish, they were constantly busy. We were also able to take some time out with a massage and enjoyed walks through the tranquility of the camp's nature trails.

It was an opportunity to reflect on the year that has passed since Cameron was diagnosed. We took time to look back on how much our lives have changed, how Nikki and I have pushed through extreme moments that have stripped away all pretence and left us battered,scarred and tired. And still we marvel at the two boys we are so blessed to have in our lives. We revel in the new discoveries each makes every day, anxieties that consume our everyday lives fade in the joy of seeing them grow in body and spirit.

We are hoping that the course of anti-biotics that Cameron will receive over the next two days will be enough to prevent having to remove his central line and enable him to head back on Monday for week 2 of the current cycle which will be very hard on him. Please hold him and Nikki in your prayers.

Round 3

Despite a substantial amount of snot and mediocre liver enzyme numbers, we were all systems go for round number 3 of Antibody Therapy this week.

Cameron was admitted on Monday morning and began treatment the following day.  This has been a relatively easy round for Cameron, although he still experienced the usual side effects of pain and itchy hives.  Despite not feeling great, Cameron has been keeping me on my toes!  He's determined to be out of his room as much as possible and I can honestly say that I am exhausted from trying to keep up with him as he races around the unit.  He has so much energy and he fights hard against the sedative effects of the morphine and benadryl, it's great to see him feeling well enough to play - especially when I know what's headed our way in the next round.

Cameron has been quite the celebrity the last couple of weeks.  He was featured in the Giving Guide of the Atlanta Business Chronicle, filmed for a video for the hospital board of directors and was photographed for an article in a local newspaper.  He is taking his new found celebrity status VERY seriously and has already started acting like a Kardashian. 

Here he is in the Giving Guide advert:

 

 



This cycle of Antibody Therapy will be completed tonight and he will be weened off the morphine from midnight - we are scheduled to go home tomorrow afternoon!  3 Down, 2 to go!

 



 

School Days

It's been a busy couple of weeks since Cameron completed his second round of Antibody Therapy.  One of the most exciting things to happen in our household is that the boys started preschool!  They are going to St. Brendan's Preschool 3 mornings a week and they are LOVING IT!  Last year, they went 2 mornings a week but Cameron was diagnosed shortly after they started school and James had to stop going to school earlier this year as he kept getting sick while Cameron was having his transplants - so it's been a long time since they were in a classroom together.  I was sure that I would have to deal with tears from both of them when I dropped them off - but the only tears on the first day, were mine!  OK, I thought, that was just because they didn't know that I was actually leaving them there for 3 hours, as soon as they cotton on to that little fact, there will be tears and drama.  Boy was I wrong!  Day two went even better than the first day, in fact, Cameron started saying "bye-bye mommy" when we were still in the parking lot.  It's no wonder that they are so happy there, it's a truly loving environment, their teachers and principal are fantastic and the boys can't wait to go to school.  We had a tremendous amount of support from the school last year, after Cameron was diagnosed and I'm thrilled that we got the go ahead from the doctors to send them there again this year.

As many of you know, sleep has been rather an elusive luxury over the last few months.  Most nights we all play a not-so-fun game of what can only be called musical beds (without the music).  The boys start off in their beds and then throughout the night they switch around.  Cameron usually goes to the guest room at some point and one of us will go and lie with him, usually falling asleep there, James will stomp through to our room at some ridiculous hour and proceed to take over the entire bed - leaving Frank and I a mere slither of bed on the very edge or both children will end up in our bed and Frank and I will eventually admit defeat and one or both of us will go and sleep in the guest room.  It's ridiculous!  I know that you are thinking "just let them cry it out, lay down the law, lock them in their rooms", we have tried to take the tough approach and it works for a while, but as soon as Cameron goes back into hospital - we are back at square one.  So, we have given up for now - we will revisit the "cry it out" technique when all the hospital visits are over (I also plan to potty train then and get rid of James' pacifier - I might need to be institutionalized). 
In the mean time, Frank and I needed SLEEP!  Our fantastic nanny, Ana, who looked after the boys while Cameron was going through chemo came to the rescue.  She stayed with the boys on Saturday night while Frank and I enjoyed dinner together and checked into a hotel and got a full nights rest.  It was amazing!

Refreshed, revitalized and feeling ever so slightly guilty about leaving the children, we took them to their favorite place on Sunday - Chuck E. Cheese!  For those of you who have never visited Chuck E. Cheese, it is a children's entertainment center that has arcade games galore.  Cameron has clearly inherited my affinity for gambling and spent the afternoon dashing from game to game, feeding tokens in and squealing with delight as the game spewed out tickets that can be exchanged at the end for a toy.  Neither of the boys can actually play any of the arcade games, but they absolutely LOVE going there.  It's an expensive and rather germy afternoon - so we either have to feel really fond of them or very guilty in order to take them there.  $40 and several hours of noise later, and all we had to show for it was 2 suckers that they exchanged their tickets for and a snotty nose from Cameron today - but the boys had an absolute blast!

 

 

 

Cameron will be going in for tests this Thursday to check his liver enzymes and to see if he is healthy enough to start round 3 of the Antibody Therapy.  If all goes according to plan, he is scheduled to be admitted on Monday September 10th for his next round.  Other than his runny nose, he seems to be feeling well, I really hope that all of his lab work looks good and that we can start the next round on schedule.

Round 2 DONE!

What a rough week!  The second round of Antibody Therapy was truly one of the most difficult weeks that Cameron has been through during the last year of treatment.  The side effects of the medicine are horrendous - all of the symptoms that I described in my last post continued for the entire week.  He could not maintain his oxygen saturation and had to be on oxygen support until Sunday, long after they turned the medicine off.  He also continued to get the itchy rash after the medicine was stopped too.  By Friday, his heart rate was often in the 190's and he was in terrible pain.

Despite all of that, Cameron was an absolute star!  He never once complained.  During the short times that he was conscious, I would ask him if he was OK and he would always nod and say, "yes Mommy, I kay".  I asked him if anything hurt and he said that his head had an "owie" and he asked me to kiss it better.  This child's strength never ceases to amaze me!  At one point, while the doctor was in Cameron's room examining him, I asked Cameron if he would like something to eat, he shook his head, "no".  I offered him his bottle and again he said "no", I was concerned that he had not eaten in days and had hardly had anything to drink, when I asked him if there was anything at all he wanted, he looked at me and said "a beer"!!!  Thinking I had obviously misheard him, I said "do you mean you want your teddy bear", "No Mommy!!  A BEER!!"  he said and pointed at the bottle of Sprite on the counter.  I think the nurse was getting ready to call child welfare, because she didn't seem to believe me that Frank and I rarely drink.  I have no idea where he got it from, but it certainly made me feel a bit happier that he wanted to drink something, even if he was demanding an adult beverage in a children's hospital.

As hard as it was to watch him feeling so terrible, I know things could have gone a lot worse.  Most of the children receiving this treatment eventually have to be transferred to the ICU, to be treated for fluid in their lungs or blood pressure issues that the medication can cause - Cameron managed to stay on the Aflac Cancer Unit the entire time.  Also, more than half of the patients getting Antibody Therapy, especially during the second and fourth rounds, get too sick to receive a full dose of the medication.  Cameron got ALL of it!  I am so proud of him, I could burst.

By Sunday, Cameron was feeling much better.  He was holding his oxygen saturation at 96%  and had been weaned off the Morphine.  His fevers were gone and the rash was better.  He was discharged late on Sunday afternoon and by the time he got home he was almost back to his usual chatty self.  He tucked into James' discarded spaghetti and meatballs dinner and had a good long soak in the bath tub.  After a good night's sleep, he was up to all his old tricks again today and talking more than ever.

Cameron leaving the hospital

As always, James is thrilled to have his twin home!  He has been behaving beautifully lately; no tantrums, I only have to ask him to do something once, he is happy and loving and a joy to be around!  James has gotten to the stage where he no longer takes a nap in the afternoon, it makes for rather a long day but I'm sure we will get used to this new routine.  Cameron still needs a short nap after lunch, so it's the perfect opportunity for James and I to spend some one on one time together - a luxury that we have not enjoyed much since Cameron was diagnosed.  Naturally, James relishes the special attention and alone time that we are having.  I have been making a special effort to turn off the TV, put my phone on silent, and really PLAY with James - whatever game he wants.  Yesterday, we camped under the kitchen table with a blanket as our tent and today, we played trains and put all of his train tracks together to make the biggest track we could.  It was WONDERFUL!  It may sound like the most basic facet of motherhood - to play with your child, but I so often find myself distracted by all the everyday chores that fill our days, when I am playing with the boys.  Calls that need to be made, vacuuming that just can't wait, an email that needs my attention, I find that I can seldom set aside time to be 100% part of the game that we are playing.  So I am focusing on a technique that I have researched, intense child-led play (You can read a good article on it HERE).  I don't ask James any questions during our special playtime (which is hard to do with a 2 year old), I don't give him any instructions, and I let him lead the game completely.  It's difficult to do, but the rewards are already becoming apparent.  James has had so little of my attention over the last year, even when I have been with him, my world has been consumed with all that is CANCER.  The child-led play technique has really helped him feel like he is getting my full attention and is supposed to re-enforce that good behaviour receives attention - tantrums do not.

Other than all of that, I am looking forward to the children starting preschool next Monday, they will both be attending 3 mornings a week.  It's going to be so good for them to get back into the school routine and spend some time with other kids!

A Rough Start

Yesterday, when I typed my previous blog post and described all the possible side effects that Cameron might experience, I had no idea that he would start experiencing them so quickly and go through almost all of them at once.

Within a few hours of starting the medicine, Cameron started to develop a terrible rash.  The redness started on his face and within 30 minutes it had spread throughout his body and developed into large, itchy hives. 

The start of the hives, this got MUCH worse before it improved.

A large dose of anti-histamine help to ease the itching and the rash improved and eventually went away for a short time, only to return a few hours later.  This continued for most of the night.

Cameron was started on a continuous dose of Morphine yesterday, before the start of his treatment.  We knew that he would be in considerable pain, but I didn't think it would start so quickly or be as intense as it was.  Cameron doesn't scream in pain - he has a high pain threshold, but the physical symptoms are hard to miss.  His heart rate started to climb steadily and he began to grunt and whimper from the pain, the Morphine and Benadryl had him very sedated, but even in a deep sleep - his heart rate was over 160 beats per minute.  His continuous Morphine dose (PCA) was increased from 0.3 to 0.6 and he was given a bolus dose of Morphine to try to get the pain under control.  I set my alarm clock to go off in 10 minute increments and pressed the button on his pain pump whenever the timer went off, to give him an extra boost of Morphine.  We eventually managed to get the pain under control and he seemed to relax a bit and his heart rate came down to normal.

Unfortunately, solving one issue seemed to cause another one.  The high dose of Morphine, mixed with the antibody medication, caused Cameron's oxygen saturation level to drop.  At first, it dropped to 93% and he held it steady there for a while, so it wasn't immediately concerning.  Then slowly, but surely, it continued to drop, until eventually it was in the low 80's.  Cameron was put on oxygen support, and initially the plan was to keep him on it for a couple of hours and hopefully he would recover on his own.  That didn't happen!  Almost 24 hours later, he is still needing constant oxygen!

As if all of that wasn't enough, he has also started to run a fever, which has gotten as high as 103.4 Fahrenheit (39.2 Celsius).

The doctors have reassured me that all of the symptoms that he is experiencing are to be expected, but that doesn't make it any easier to watch.  The combination of exhaustion and worry has caused my mind to go to places that I would rather not visit.  Watching my baby struggle to breathe, no matter how "expected" they tell me it is, sends chills down my spine and terrifies me to my very core.  I am thankful for every minute that Cameron tolerates this medicine because I know that he desperately needs to get as much of it as possible, but it's soul destroying to watch him be this sick - and know that it might even get worse before it gets better.  I'm taking it minute by minute and trying to find solace in the fact that, once they do turn the medicine off (hopefully after he has received the full dose), his recovery will be relatively fast and he shouldn't have any long term side effects.

Week two

Cameron sailed through his treatment last week.  He was running around the hospital, making friends with the other kids and generally having a great time.  Sometimes, I think that Cameron thinks the hospital is his own personal Disney Land.  He really enjoys being here, for the most part.

He was discharged late on Saturday afternoon and was able to spend Sunday at home with us.  We returned early on Monday morning to recheck his liver enzymes (which are down to an impressive 127!), and to be admitted for the second week of this antibody cycle.  This week, he will be given two types of medicine, IL2 and ch14.18.  Given separately, these medicines have less side effects - but combined, they can be nasty (to read more about antibody, you can click HERE).

There are 3 main side effects that we can expect: 

1)  Pain - Cameron was started on a continuous drip of morphine this morning, prior to the antibody treatment being started.  The morphine will be the minimum that he will get, if his pain intensifies he can get several alternatives including Fetanyl, which is 100 times stronger than morphine.

2)  Allergic Reaction - In the first round of antibody, Cameron developed a nasty rash as a reaction to the ch14.18 drug.  We expect him to have the same reaction this time and so he is on Benadryl (an anti-histamine) every 4 to 6 hours. 

3)  Respiratory Issues - The combination of the IL2 and CH14.18 can cause severe fluid retention and what the doctors refer to as "leaky vessels", the vessels can leak fluid into the lungs, causing respiratory distress.  This is our biggest concern and one of the top reasons that so many of the children receiving antibody therapy end up in the ICU.  I have been told that it is entirely possible that Cameron will end up in the ICU and that it is also possible that at some point they may have to stop this round therapy if he gets too sick to handle it.  It is very common for children to have to stop therapy halfway through a cycle as their bodies just can't cope with the medication.  We want Cameron to get as much of the antibodies as he can, so I am praying that he continues to cope well and doesn't have ANY issues this round.

Please keep Cameron in your thoughts this week!  If you are someone who prays, please say a special prayer for my little man, if you are not religious, then please send him extra positive vibes this week - I have a feeling we are going to need it!

Round 2 of Antibody

Hooray!  We are finally in the hospital and Cameron has began round two of his antibody therapy.  After four long weeks of testing his enzymes, getting my hopes up and being disappointed, I was more than a little relieved to learn that Cameron's enzymes had dropped to 186 yesterday.  This morning, they had dropped even further, to 147! 

Last week, we decided that we had tried everything else that had been suggested and it had all failed, so the only thing that was left was to take Cameron off his formula.  As you know, he is such a tiny little mite and although he eats well, he struggles to put on weight.  But we had to try something!  Cameron's doctors had various opinions as to whether the formula might be causing his liver to work a bit harder than it needed to, some were convinced that taking him off the formula was a waste of time and would possibly be to his detriment, if he lost weight, but others were open minded and thought it was worth a try.  The thinking behind taking him off the formula was that nutritional supplements contain relatively large amounts of lipids and carbohydrates, both of which can put added pressure on an already irritated liver, thereby causing the enzymes to elevate.  We switched him over to skim milk and continued to give him a lower fat diet for the week.  The drastic drop in enzymes has me convinced that it must have been the formula - at least in part.  Amazingly, Cameron did not lose any weight this week and maintained his 11.2 kilograms (24 pounds).

Whether it was the formula or just taking an extra week to recover, it doesn't matter - the enzymes are down and we are here, getting the treatment he needs.

So far, this round has been very easy on him.  I was told that this week would not take much of a toll on his little body, but next week would be a different story and I should prepare myself for high fevers and terrible pain for poor little Cameron, among other possible side effects.  But, so far, so good. 
He has had a great appetite and has been in good spirits all day, his boundless energy has left me completely exhausted this evening as he played happily through his nap time today and has had me running after him with his IV pole as he did laps around the ward. 

For the first time since he was diagnosed, he asked me several times today where his brother was.  He even broke his banana in half and asked me to give half to James.  I keep telling him that James isn't here and he nods and says "oh" as if he just forgot.  I took him to bath this evening and he called out "come on James!!", then looked at me questioningly and asked "Baby bath?".  Urgh!  My heart shattered!

James has been missing Cameron just as much, but thankfully he is being very well taken care of by my lovely sister, Gina.  She has been keeping him very entertained and with the help of my dear friend, Leigh, they have already been on two outings and it's definitely helping to keep his mind off the fact that Cameron and I are not there.  Unfortunately, it seems that James is coming down with a cold - this seems to be a recurring theme.  So often, when Cameron goes into hospital, James gets sick.  Several people have said to me that it's a "twin thing", that he feels what Cameron feels in a way - and I know that that has some truth to it.  Twice, when the boys were babies, I took Cameron for a blood test, James was in his car seat, facing away from Cameron.  On both occasions, as soon as they put the needle in Cameron's arm, James screamed.  Cameron barely flinched - but James cried as if it was his blood being drawn.  There was no way that he could see what was being done to Cameron and he wasn't reacting to Cameron's crying, because Cameron was perfectly still and not making a sound!  I guess, unless you are a twin, that bond is something the rest of us will never fully understand.
 I hate not being there for him when he is not feeling well, but it gives me much peace of mind to know that he is with his Auntie Gina, who loves him dearly and is taking great care of him!

Rollercoaster

After delaying Cameron's second round of antibody therapy for two weeks, Cameron had his liver enzyme levels tested again last Thursday.  The results were good - his levels were at 232, not great, but low enough to begin round number two.  So, I packed up the car, dropped James at a friend and Cameron and I headed down to the hospital - ready to get this done!  He had his levels tested again and low and behold - they were back up to 405!  To say that I was frustrated and disappointed would be an understatement.  I requested that he have his enzymes retested at an independent laboratory, just to make sure that there wasn't a mix up, and although the results came back lower, they were still too high for him to start his treatment.  So we were sent home again to wait for another week.

Cameron has been off of all his medications for several weeks now, he is eating healthily, drinking as much as I can get him to and generally doing all that he can to rest his liver, and yet we are still seeing elevated levels.  The only thing that we hadn't tried was to stop his formula, so as of Monday, I have replaced his formula with skim milk.  The doctors are of varying opinions as to whether the formula might be an underlying cause of the elevated enzymes, but we have tried everything else - so it's worth a shot.  The thinking behind stopping the formula is that all dietary supplements contain high levels of lipids and carbohydrates, when the liver is already irritated, it doesn't take much to elevate those enzyme levels. 

Cameron will be retested this Friday and if the enzymes are within the desired range (below 250), he will start round two of the antibody next Monday, if they are any higher then we will need to take him to see a Gastroenterologist to make sure that there is nothing more serious going on with his liver.

Another Setback

As I mentioned in my last blog post, Cameron was unable to start his second round of Antibody Therapy because his liver enzymes were too high.  The treatment was initially delayed by a week and he was retested on Thursday, with the hope of starting this coming Monday.  Unfortunately, we were disappointed to discover that his liver enzymes had barely moved.  They had only dropped by 6 points, from 369 to 363.  In order for Cameron to start the next round, the enzymes need to be below 250.  This would not be a problem if time wasn't so critical.  The Antibody protocol is extremely time sensitive.  The doctors are not happy to delay his second round by more than two weeks, so if by next Thursday we haven't seen a drastic improvement in the enzymes, I have been told that the doctors will need to contact the chairperson heading the study to find out how to proceed.  There is a chance that Cameron could be removed from the study and not allowed to get the Antibody Therapy.  This would be devastating!!  Antibody Therapy is vital to Cameron surviving this disease, it is the most important part of his treatment. 

The logical part of my brain knows that I am stressing prematurely, two days off the medicine is not enough time for his enzymes to come down sufficiently to be retested, next Thursdays test will be a much better indicator of how his liver is performing.  The rest of my brain, however, has gone into complete panic mode.  I find myself crying randomly, like a did when Cameron was first diagnosed.  I am short tempered with everyone around me and I feel like I just can't cope with this.  We can't have more bad news, we just can't.

Frank contacted a liver specialist that he knows and he was able to give us some advice on what we can do to help flush his liver and get it to recover a bit quicker,  all of the things he mentioned can be easily added through Cameron's diet - which is good news as we are not prepared to give him any type of supplements or other remedies until we have discussed them with his oncology team.

Even if Cameron recovers and manages to get his second round of Antibody Therapy, this could easily happen again and cause more delays and possible expulsion from the study.  He is just so little and his poor liver has been put through the wringer over the last year with all the medications that he has been on.  We can only hope and pray that he improves and is able to continue with his treatment.

Please keep him in your thoughts and prayers this week and cheer for those enzymes to go DOWN DOWN DOWN!

Delays

Cameron has been doing very well since completing the first round of his Antibody Therapy.  Initially, when he was first discharged from the hospital, he suffered from some withdrawal symptoms from the morphine that he had been on.  He lost 1 kg (2.2 pounds) in 2 days and felt generally yukky.  Once we got him on a methadone wean, he seemed to perk up and recovered quickly.  He regained his appetite and his usual lust for life was back.  He has gone from strength to strength and is back to his normal, fun loving, 2 year old self.

We were able to take the boys out a few times over the last two weeks to do some fun activities, including a trip to Lego Land and they even attended a birthday party at the Georgia Aquarium. 

Cameron's hair is growing back!  He no longer looks as sickly as he did a few months ago, he has eyelashes and eyebrows and a fair amount of fuzz on his little head.  I can't help myself and find myself stroking the soft fuzz at every opportunity, even James is a fan of rubbing Cameron's new locks.  Weirdly, his hair is coming back much darker than it was before, I can't wait to see what it looks like when he has a full head of hair again.

Cameron was supposed to start his second round of Antibody Therapy this week.  We were admitted and checked into his room, but before we had time to settle in, I was informed that Cameron's liver enzymes were too high for him to start the treatment.  A normal person's liver enzymes are around 50, treatment can start as long as the enzymes are below 250 - Cameron's were 369!  After his first round of Antibody, it was noted that his enzymes were elevated, they were over just 250 at that stage and we needed to wait a few days before he could start the medication that he takes at home.  The enzymes came down to a point that we could start his medication, but they were still on the high side.  As a result of not letting them recover completely, the medication that he has been taking has pushed them way up.  We were sent home and he will be tested on Friday to see if he will be able to start round two on Monday, or if we will have to wait another week. 

It's so frustrating not being able to plan properly!  I need to sort out care for James, the boys are supposed to start school in 6 weeks, my mom and sister both had trips planned to visit us, and now everything has to change.  If one treatment is delayed by a week (or two), then all the treatments get pushed back, and of course, this could happen again - his liver enzymes could cause further delays down the road.

Besides the logistical nightmare that this causes, I am more concerned with what the impact could be on his overall treatment if this therapy is delayed and what the long term effects on his liver might be.

You would think that by now I would have learned that, in the world of cancer, you can never make plans and should always expect the unexpected.  Oh well, the bright side is that I have had another week at home with both of my precious babies and I've had an extra week to fatten Cameron up.

Here are a few photos from the last couple of weeks:

 Playing arcade games at the clinic with Cameron's oncologist, Dr. George!

Some light reading on the potty

 Enjoying a bite to eat with Dad

 At the aquarium

Cameron LOVED having his face painted at the aquarium party. 

Antibody Therapy - Day 2

We are two days into Cameron's first round of Immunotherapy and so far he has tolerated it reasonably well. I was warned that the medication that he is receiving will make him feel awful, flu-like with a lot of pain.  What they didn't warn me about was that my child would look like a spotted blow fish after a couple of hours of treatment.  One of the common side effects is a rash, Cameron has taken it to a whole new level.  The poor child is covered in itchy red spots that subside with the help of an antihistamine, but reappear long before his next antihistamine dose is due.  He is also retaining quite a lot of fluid, he looks like a puffy little marshmellow and I really have to restrain myself from pinching his chunky little cheeks! 

In all seriousness though, he does seem to be in pain, but it appears to be well managed by his continuous morphine pump (PCA) and nerve pain medication.  He slept from 10am yesterday until about 8am this morning, only waking occasionally to take a few sips of formula and then drifting off again.  The sleep seems to be getting him through this and his regular antihistamine doses really help keep him sedated.  When he woke up this morning, he told me that he had lots of "owies" and asked me to kiss his toes to make them feel better.

Although some bloating is normal, he is being watched very carefully to make sure that he doesn't retain too much fluid.  Excessive fluid retention can affect his lungs which can be extremely serious.  His blood pressure is also being closely monitored as the medication can cause it to drop dangerously low.  Thank goodness we have some fantastic nurses and they are very much on top of everything.  Cameron's vitals are taken every 15 minutes for the first hour after he starts the medication and then every hour after that until the infusion is completed. 

The recommended time frame to administer his medication is over 10 hours (every day for 4 days), however, if for some reason he has a severe reaction to the medication, the infusion can be paused or slowed down to go in over 20 hours. Whatever is left over after the 20 hours is up can not be administered. Cameron was able to stay on course yesterday and got all of his medicine in the 10 hour time frame.

He seems to be doing just as well today, and is currently napping peacefully.  Hoping that the rest of our stay will continue to run smoothly.

Results Are In!

It's been one of the longest weeks of our lives!  Last week, Cameron had a CT scan, an MIBG scan, a urine analysis and a bone marrow aspiration.  Today we got the final results......  every one of his scans were clear!!  There was no cancer detected on any of the tests!  We are over the moon!  We still have a long road ahead of us, Cameron will be tested every few months initially and then eventually he will be tested once a year.  But for now, we are celebrating this huge victory over this terrible disease.  When Cameron was initially diagnosed, his bone marrow was over 90% affected with Neuroblastoma and his cancer had spread all over his body, to get a clear result now is phenomenal.

Cameron continues to do very well.  He is still eating like a horse, and he and James are playing so beautifully together - it warms my heart to watch them.  He is talking up a storm, adding to his vocabulary almost daily.  He has also become fiercely independent, he insists on doing EVERYTHING himself, including wanting to make his own breakfast.  He loves to help me around the house, even though a quick 5 minute task can end up taking me half an hour with his help, it's such fun to watch him "cleaning" for mommy.  Most of all though, he is being a normal toddler, throwing tantrums, using the word "no" at every opportunity and bossing his brother around.  It's exhausting, frustrating and WONDERFUL!  I am so grateful that he is well enough to act like a normal 2 year old.

We meet with Cameron's oncologist on Wednesday to discuss his test results.  Cameron will then be admitted to hospital on Monday to start his anti-body therapy, the final phase of his treatment plan.  He will be the first patient to receive anti-body therapy at Scottish Rite Children's Hospital (although their sister hospital, Egleston Children's Hospital, has been administering the treatment for many years).  We are confident that he will be in great hands, even so, the hospital has organised staff from Egleston to spend the week at Scottish Rite to oversee the procedures.  We are very fortunate to have such amazing care for Cameron!

I know, I know, I am a terrible blogger!  I'm sorry that I haven't updated the blog in ages - but we have been far to busy having fun!

Cameron is doing VERY well!  He has gained some weight and is now up to 11kgs (24 pounds).  There are days that he eats more than James, and we have taken him off all of his appetite stimulants, so he is doing this all on his own.  He is the sweetest, happiest little boy!  His new hobby is bossing poor James around.  He calls James "baby" (even though James is twice his size and 3 minutes older), and poor "baby" gets told off regularly!  It's so funny to watch them interact.

Cameron completed his radiation and suffered almost no side effects.  Although he was nervous in the beginning, he soon became a pro and would even hold his own mask for his sedation. 

His antibody and white blood cell counts have been good lately, so we have allowed him to be a two year old.  We have made a few trips to the park and even allowed him to visit Toys-R-Us this weekend.  For a boy that spends most of his time looking at the same hospital fish tank, a trip to Toys-R-Us is like going to Disney Land.

We have really been trying to make the most of our time together as a family, because he is due to go back to hospital on June 25th to begin his Anti-Body Therapy - the final phase of his treatment.
As much as we all love having Cameron at home, James is especially thrilled to have his partner in crime around.  He has relaxed a lot and is back to being his old self again, loving and gentle with far fewer tantrums.  I hate taking Cameron away from him again when he has just settled down.  The good news is that Cameron will only be going into hospital for a week at a time - the bad news is that it's every month for the rest of this year. 

This week, Cameron will be having scans to check if he has any new or residual cancer left,  he will also have a bone marrow aspiration to check that his bone marrow is clear of cancer.  We need clear test results to start his antibody therapy.  Antibody therapy is one of the most important parts of Cameron's treatment, it will improve his prognosis by about 15%, which is substantial.  It's a very painful, unpleasant process, that can have severe side effects - but it is a vital part of this treatment.
Naturally, this is a very stressful week for us, as much as I want to be positive and confident that he is getting better - there is that tiny voice in my head that says "what if he isn't".  It's terrible - I try to banish that voice any time it pops up, but it's a reality -  this terrible disease can come back at any time, not matter how much chemo we throw at it!  In the mean time, we are keeping our fingers and toes crossed and hoping for perfect and clear results this week!

I promise to blog as soon as we have all the results and we know what the next step is.

Fun in the Sun!

Cameron has almost completed the radiation phase of his therapy, he has two more sessions on Tuesday and Wednesday. So far he has tolerated the radiation quite well and soon the 6am drives to Egleston will be over and we will remove all of his radiation markers (he has stickers that his doctors use to target the radiation beams at his primary tumor site). In early to mid June Cameron will have more scans and imaging which we are hoping come back clear so that he can begin anti-body therapy towards the end of the month.

In the meantime we have been making the most of the home time and decided to brave our first family camping trip at Stone Mountain Park.  It was an awesome experience. The boys had an absolute blast and played so hard that they were both fast asleep before sunset leaving Mom and Dad some downtime around the campfire. The next day we were joined by friends for a picnic and a  fun-filled day at the park.

Nothing like an ice cream on a hot day

Dads little helpers get stuck in with pitching the tent

This weekend we visited the Australia Festival at the polo fields in Forsyth, we anticipated hot weather so we headed out early and were able to do most of the stuff that we wanted to before the heat of the day set in. The boys highlight was seeing and touching some of the Aussie wildlife, James has a real passion for animals and didn't want to leave. We really enjoyed just watching them.

Hey James - lets check that out

James and the Wallaby in deep conversation at the Australia festival

Fun in the Sun

Mothers Day

Things have been busy in our household lately!  With Cameron home for the last 2 weeks, we have been making the most of our time together.  James is starting to relax a little bit and is loving having his brother home for such a long period of time.  We have been to the park to feed the ducks, we went to see the fire engines at the local Public Works event and we have played and played and played.  I have been working on decorating the boys new room with "big boy" beds (photos soon).  Cameron has been doing remarkably well and and we couldn't be happier with his progress.

Tomorrow Cameron will start radiation.  He will be radiated everyday for the next 2 and a half weeks and will have to be put under general anesthetic each time - that means he can't have anything to eat or drink from midnight, every night for the next 12 days.  This is NOT going to go over well!  Cameron, my skinny little boy, has found his appetite - in a BIG way.  His recent acquisition of language has brought with it an easy way to demand every desire and be understood, a major score for a two year old.  Much to our surprise, most of the demands have been for food.  Of course, we are thrilled and I really hope that he gains a bit of weight.

Today we celebrated Mothers Day - to some it's just another day created by Hallmark to sell cards, to me it's a day that I longed to celebrate for many years.  Every year on Mothers Day I cried bitterly that I wasn't a mommy, my heart ached to hold a baby in my arms and feel the love that only a mother can feel for a child - a love so deep that you would die for that person, without a seconds thought.  But for years my arms were empty and my heart was broken.  I hated Mothers Day, I hated my stupid body for not giving me what my heart desired most - the most primitive of things - a child.  After many years of trying and finally my beautiful boys came into my life.  It felt incredible as I celebrated my first Mothers Day, overjoyed that my dream had come true, with not one but two perfect bundles of immense joy.  I'm not going to pretend that every moment of having children has been magical and wondrous - by no means.  It's been tough, I had no idea what hard work being a mother is.  Sleepless nights, screaming tantrums, a house that constantly looks like a tornado ripped through it - and that's just this week.  But it's the moments that make you forget all that, when you look at them while they are sound asleep, or when they laugh uncontrollably at you for playing peek-a-boo with them, or when they play happily together without fighting over a toy - it's those moments that all mothers savour.  So, today as I celebrated Mothers Day with my beautiful boys, I drank in every moment - life is so fragile and sometimes I think I get so wrapped up in the day to day madness of our busy schedule that I forget to stop and appreciate what I have.  I am grateful every second that I have been given with my children, I pray that there are many more Mothers Days in our future and that I enjoy each one as much as I have enjoyed today.

This was taken as we were leaving the Ronald McDonald House - Can you spot Cameron?