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?

Brotherly Love

Cameron was discharged from the hospital on Friday, even though we had been told the day before that he would not be discharged for a few more days, because he still hadn't eaten anything or had anything to drink.  I was reluctant for him to be discharged on Friday, because I HATE having to be readmitted soon after discharge - just keep him in the hospital until he is truly well enough to leave, rather than moving into the Ronald McDonald House and then having to pack up again, sit in the emergency room for hours, wait for a room on the Bone Marrow Transplant floor, blah blah blah - you get the picture. 

Nevertheless, the doctors felt he was well enough to be discharged and that he would start eating in a few days, as soon as he got hungry enough.  What we didn't consider was that Cameron would continue to have nausea once he got home, as a withdrawal symptom of being weaned off his medication.  An hour after we checked into the Ronald McDonald House, Cameron started vomiting.  Of course I didn't have any nausea medicine for the poor child, and I couldn't take him into a pharmacy because his immune system is still too suppressed to be around other people.  So, poor Frank had to pack up and drive all the way here with a very sleepy James, to come to Cameron and my rescue.  We solved the nausea issue relatively quickly with a dose of Zofran and we were able to get him to take his Methadone to help with the withdrawal symptoms, but I had forgotten one thing - Cameron's fluids were supposed to have been removed from the fridge several hours before, to bring them to room temperature before they could be administered.  So Frank and I took turns with the bag of fluids up our shirts, trying to use body heat to warm them up.  It was hysterically funny and we got the job done, the fluids were at room temperature in no time - that's what I call team work!

When Frank and James arrived at Ronald McDonald, the first thing that James did was run into the bedroom to find Cameron.  As soon as he saw him, his little face lit up and he climbed on the bed and held Cameron's hand.  Cameron had fallen asleep, but as soon as he heard James he opened his eyes and grinned from ear to ear.  I thought my heart would explode with love for these two, and at the same time, my heart broke that we have to keep them apart so much, they really need each other.

The boys have played beautifully together and have even been sharing their toys and taking turns.  We had hardly any tantrums, until today - James had a birthday party that we were going to attend.  I had told him he was going to see his friends and have a ton of fun.  He had nodded enthusiastically at me and seemed to be looking forward to it, until we had to get dressed for the party.  When I tried to change his diaper and put on his outfit, all hell broke loose.  He threw a monumental tantrum and the whole time I was trying to convince him that we were going to have so much fun and see our friends, but he wasn't at all interested.  I finally managed to dress him and we arrived at the party, but James really didn't want to participate.  He stayed near me most of the time and sobbed when he was VERY GENTLY reprimanded for doing something naughty.  After about an hour I asked him if he wanted to leave and he nodded, so we headed back to the Ronald McDonald House.  As soon as we walked in the door, he ran to Cameron and hugged him.  They stayed locked in an embrace for ages with James gently kissing Cameron on the top of his bald little head.  I felt terrible for him!  He had just wanted to be with his brother, that was what all the antics had been about - I will be so happy when these boys can talk and tell me what they need!  The bond that these boys have is quite phenomenal.  It really is a beautiful thing to witness!



 The rest of the weekend whizzed by, but it was truly fantastic.  Frank and I were able to just sit and chat while the boys played quietly, something we haven't been able to do in quite a while.  There were no chores to be completed, no running around, nothing that really required our urgent attention - just each other and our beautiful boys.  Having Frank and James here this weekend has been incredibly good for Cameron too.  After not eating for almost two weeks, he hungrily guzzled down a bottle that James handed him - but ONLY if James gave it to him!  He refused to eat or drink anything that Frank or I gave him, everything had to come from James.

What an amazing weekend!  I feel like I have had a week long vacation!  Refreshed, renewed, ready to tackle the next week of doctors and clinic visits.  Unfortunately, all good things must come to an end, and Cameron and I were very sad to say goodbye to Frank and James.  We are off to a clinic appointment tomorrow morning and hopefully we will be heading home later this week. 

Much better

Cameron is well and truly on the mend!  He has started feeling so much better that the doctors have started weening him off his morphine and intravenous feedings.  His blood counts are starting to come back up and they are talking about discharging him later this week.

He has started talking again, which means that his mouth sores are starting to heal and he is showing an interest in eating again (although he just chews it and spits it out, he won't actually swallow anything yet). 

He will once again be going to the Ronald McDonald House for about a week after he is discharged, just so that he is close to the hospital in case he gets a fever or anything else goes awry.

I am meeting with his medical team tomorrow so that we can discuss the next steps of Cameron's treatment: radiation and anti-body therapy.

I am ready to get out of here, it has felt much longer this time, even though I have been able to go home more.  I am ready to reunite my boys and have a bit of normalcy for a while. 

One of those days (Day +6)

You know those days where a lot of things go wrong? Not big things, just small things that add up until you wonder if perhaps you should have just stayed in bed that day?  Today has been one of those days!

Cameron started running a fever last night, which continued on and off for most of today.  The doctors do not want to give him the intravenous Tylenol anymore because of the strain that it can put on his liver and he completely refuses to drink the oral Tylenol, so he is not being medicated to bring the fever down.  There is no major risk to his health by not reducing his fever, it's more of a comfort thing, and an uncomfortable Cameron does not make for a fun day for any of us.  So he has been understandably grumpy today and besides the fever - he has also been very nauseous.

So after a morning of changing diapers and linen (the diapers don't always function as well as they should under these conditions), Cameron settled down for a nap and I settled down to catch up on my reading, when I started to smell something.  Now, I am not easily offended by smells - you can't be after you have smelt some of the lovely aromas that occur after a stem cell transplant, but this was a different scent.  This was decidedly FISHY!  YUK!  I can't stand the smell of fish!  As soon as my nurse walked in she noticed the smell too and we set about trying to detect the culprit.  We soon discovered that Cameron's TPN (intravenous feeding liquid) had started to leak and that was what was smelling so disgusting.  Reasonably easily solved, the nurse replaced the TPN with fluids and brought in a new IV pole and after a few spritzes of Lysol, our room was somewhat less stinky.

No sooner had I sat down and picked up my Kindle, when my nurse became a bit flustered.  She had lifted Cameron's blanket to connect him to the new fluids and discovered that he had been bleeding from his central line.  This could mean one of two things:  the connection on the line was a bit lose and had allowed some blood to escape or Cameron's line was broken and would need to be surgically replaced as soon as possible (not the best scenario when your child has no immune system).  In trying to determine what the cause of the bleeding was I lifted Cameron's shirt to get a better look at his central line, and as I lifted it - the entire sterile dressing came away from his skin.  It is of the utmost importance that the area stays clean, dry and sterile at all times as it connects directly to his blood stream and an infection could be fatal, so it is constantly covered with a sterile dressing to protect it.
At the precise moment that the dressing came away, Cameron threw up.  I instinctively put my hands out to catch it and protect the central line.  Oh my goodness!!  GROSS! 

Of course, we then had to change the dressing, which Cameron detests and insists that it is akin to a medieval form of torture!  The linen had to be replaced AGAIN, and I headed downstairs to do my millionth load of laundry. 

No wonder I am exhausted tonight! 

Photos

Seen as I don't have much to write in the way of an update, I thought I would post a few photographs instead. 

For those of you who have always wondered what a stem cell transplant

looks like - here you go.  

Cameron is completely grossed out by all the saliva and he does not like it to get on him

when it dribbles out of his mouth - so he wipes himself if any happens to touch him.

Dog and Bear are not allowed to have any on them either.  We go through multiple boxes of tissues here!

Bored of the usual playing iPad with his hands, Cameron mixes it up a bit and plays using his feet.



A futile effort to keep him reasonably dry.

All tucked up after his bath.

 My handsome lunch date, unfortunately the conversation was a bit lacking - but at least he is cute!

Day +4

It's been 4 days since Cameron's transplant and the poor child is really feeling awful!  His mucositis is getting progressively worse and he is producing enormous amounts of saliva, which he keeps in his mouth until he can't hold anymore and then spits it all out at once.  It is truly disgusting!  I have never been very grossed out by my children's bodily functions - but for some reason, this saliva fountain makes me want to throw up! 

Apparently, the older kids who have stem cell transplants, say that they feel like they have a terrible case of the flu afterwards, so I can only imagine that that is how Cameron feels.  He lies down most of the day, sitting up seems to nauseate him, and he naps often.  As bad as he feels now, he is doing much better than last time.  He has only had one low grade fever and has spent far more time awake than he did last time.  He has even played on the iPad for short periods of time today and demands that the TV is left on ALL of the time, on the cartoon channel.

This weekend we were sad to say goodbye to Frank's mom, who has been over here to help us with the children during Cameron's hospital admission, as she had to return to South Africa.  On a happier note, we welcomed back the lovely Ana, our wonderful nanny that worked for us last year while Cameron was going through chemotherapy.  I went home to spend some time with James and Frank spent the weekend at the hospital hanging out with Cameron. 

So far so good, let's hope it continues to go well and that we are able to bust out of here in a couple of weeks!