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.