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.