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!