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!

Transplant Number 2! (Day 0)

Today was Cameron's second transplant.  In the hospital, they call it his re-birthday because all his cancer infected cells and bone marrow have been destroyed by the extremely high doses of chemotherapy and have now been replaced with fresh, shiny new cells, hopefully giving him a second chance at a cancer-free life.

Leading up to today has been a really easy week for us.  Cameron has been in high spirits most of the week and was minimally affected by the chemo side-effects.  In fact, he has only thrown up twice from the chemo.  Usually, Cameron gets VERY nauseated from the chemotherapy - especially the platinum based ones (which is one of the 3 he had this week), but for some reason, this time he has been fine.

Until today, of course.  Cameron is clearly starting to feel the effects of having his bone marrow annihilated.  He slept for about 80% of the day, only waking to find his teddy-bear or if we changed his diaper.  His mouth sores appeared almost over night and he has completely stopped eating.  Although he doesn't have a fever yet, they doctors have decided to draw blood cultures and start him on antibiotics just to make sure, because he clearly feels awful.

The has been put on full intravenous feedings and a constant drip of morphine to keep his pain under control.  His blood pressure started to get a bit high after his transplant, which is usually a side effect of the preservative that they use in the stem cells.  Because it is a common side effect, Cameron was monitored closely and his blood pressure was taken every few minutes.  His blood pressure eventually got to the point where it was necessary to give him medication to bring it down.  Thankfully, the medication worked and his blood pressure was stabilized quite quickly.

So now the waiting game begins.  We have to wait for his counts to come back up and for his immune system to start working again, and in the mean time we have to do everything we can to make sure he doesn't get sick.  This is the terrifying part.  This is the part where none of us slept last time.  But deep down, I know he'll be fine, I just hope that the rest of our stay here is as uneventful as possible.

The Calm before the storm? (Day-3)

Things been very quite here in "Hotel CHOA".  Cameron started his chemotherapy last Thursday in preparation for his stem cell transplant and has been coping incredibly well.  Despite massive doses of chemo, designed to wipe out his entire immune system, Cameron has been his usual happy and playful self and so far has not shown any of the usual side effects of the chemo.  I know I am probably jinxing myself by typing that - the type of chemo that he has received is know to have a delayed effect with regards to nausea, but when the nausea starts, it can be very VERY bad.  But, so far so good.  His appetite has started to wane a little bit and he has lost a little bit of weight, so he will likely get started on intravenous feedings in a few days time, to prevent too much weight loss.  For now, his chemo is finished and he will have a couple of days rest before his transplant on Thursday.

In some respects, I am finding this transplant more difficult than the first one.  I know what's coming, I know how sick Cameron is likely to get and I know how long it will be before we are all home together again.  Because I know that there will soon be days when Cameron feels too sick to play - I am making the most of our play time.  We are having a blast!!  We've had tea parties, we have been on Easter Egg hunts (numerous times) and we have even finger-painted with sanitizing foam.  I'm trying to focus on the positive and the fun, but in the back of my mind my fear lingers.  I will be so glad when this transplant is over and we can return to a somewhat normal life for a little while.

Here are a few photos of what we've been getting up to:

Playing on Pinterest.com

Tea, anyone?

Basket of Easter goodies that he received from the Taylor Brooks Foundation

I scream, you scream, we all scream for ICE CREAM!

Finger painting with sanitizing foam

Our Easter Egg hunt

Easter on April Fools Day

Cameron is being admitted TOMORROW for his second stem cell transplant!  Where has the time gone?  I honestly feel like we just got home from the last transplant, I can't believe that we are going back already. 

So, because we will be in the hospital over Easter, we decided to celebrate a week early.  I know that the boys have no idea what Easter is about and the idea of searching for brightly colored eggs in our back yard, at the crack of dawn, was not something that they would have missed had we decided not to celebrate early; but sometimes it's more about making memories for Frank and I than teaching the boys traditions at their young age.  Needless to say, we all had a blast.  I bought what I thought was a substantial amount of plastic eggs, stuck little candy treats in each one and headed out as soon as it got light, to "hide" the eggs.  Well, apparently my idea of a substantial number of eggs and the boys' idea, differs quite a lot.  I ended up stealing the eggs they had already found out of their baskets and running around like a crazy person, re-hiding them.  The boys could have hunted for their Easter eggs all day if I had let them.  Cameron was so excited by the process that he was screeching with delight each time he spotted an egg.  The next morning, the boys immediately grabbed their still full Easter baskets and ran to the door to go hunting again.  I had to quickly hide a few around the house to distract them.  What an amazing day!

Cameron had his ear tubes (Grommets) put in today to try and help the fluid build up that will most likely occur from the mucositis that he will get again with this round of chemo.  Unfortunately, the platinum based chemotherapy that he has received and will receive again this week, has started to cause some hearing loss of high frequency sounds, and the audiologist is recommending that he gets hearing aids so that his speech development isn't too badly effected.  This is just one of the many side effects that the chemo causes, but I guess it's a small price to pay.

James is doing well and has really enjoyed having Cameron home.  He often reaches over and takes Cameron's hand and they will sit and watch TV holding hands and he loves to rub Cameron's bald head (to be honest, we all do - it's SO smooth).  He finally seems less stressed and anxious, so it breaks my heart that tomorrow I have to take his best friend away from him again, but I'm hopeful that this is the last time that we will be gone for this length of time and soon we can get back to "normal".

Here are a few more photos of the Easter fun...