Our First Milestone

We finally reached our first milestone, the end of induction chemotherapy. Cameron was admitted on the 3rd of January to have his g-tube removed and have his final chemotherapy treatment. The g-tube site cleared up remarkably quickly and we had a much happier boy as a result.Whilst we will miss the utility of the tube, the infection risk of keeping it was too high, especially as he goes into transplant.

The final chemotherapy was administered as planned and after Cameron was discharged last Saturday, we slipped out of Scottish Rite for the last time (or so we thought). Last week Cameron seemed in high spirits and was enjoying being home with Mom, Jamie and Grandma.After a routine blood test on Thursday he was scheduled for a transfusion at the outpatient clinic on Friday. In the interim his temperature was on the rise and after his transfusion he was admitted straight from the clinic back into the familiar wards of Scottish Rite. Tests came back positive for RSV, a highly contagious respiratory virus, which Cameron of course caught as his immune system is at it lowest.

We were quickly moved from the cancer ward to a more isolated room on the third floor for the sake of the other kids. So here we sit, burning through yet more episodes of Blues Clues and Olivia interspersed with games and drawing.I guess the tedium is good practice for when we are in isolation after the transplant. Cameron has become a master at navigating through Moms iPad to find his favorite apps, it is amazing to see him develop skills in ways we never dreamed of as kids. He still has a bit to learn about sharing,I'm afraid that he is getting close to figuring out Angry Birds in which case I may never see the iPad again.

James is showing the strain of Cameron being away and his little life being disrupted. It is tough enough as an adult to grasp all that is happening, through the eyes of a child who does not have the capacity to see beyond his immediate situation, everything is completely overwhelming. Whenever Cameron is admitted James sees only one parent for an hour or two each day during the week, we try as much as possible to interact with him on the weekends but even that will decrease as Dad starts to work Saturdays. His anxiety is expressed through crying when we leave the room and more tantrums. Mom had to collect him from school after an hour this week because his teachers could not console him. Thankfully we have Granma staying with us and she has brought a crucial element of stability to his life.We are determined to do everything in our power to maintain as stable and loving environment as possible.

The immediate future is as busy as it is daunting. Over the next few weeks Cameron will have a battery of tests as an outpatient, after which Mom will be as adept at project management as any professional. These must all be completed and submitted for insurance review before he begins the bone marrow transplant which must begin in the next 5 to 7 weeks. Once he is admitted he will have a high dose of chemotherapy designed to destroy any remaining cancer, wait for a period of time and then have the stem cells that were harvested last year reintroduced to his body. The idea is that these cells will make their way to his bones to form bone marrow. What follows will be weeks of recovery in a sterile environment under constant medical care.

We say thank you again to the wonderful nurses, techs, doctors and support staff on the Aflac ward at CHOA Scottish Rite whose vocation is a true calling and who do their work with genuine compassion. Our gratitude also goes to family, friends and neighbors who's practical help and support has not waned and has sustained our family through chemotherapy to this first milestone.

Now that the craziness of the Christmas season has started to subside, I finally feel like I have a few minutes to post a long overdue update on our blog!

Cameron completed his 5th round of chemotherapy the week before Christmas. We were all on tender hooks as to whether he would be well enough to be home on Christmas day, luckily he was and we had a fantastic Christmas! Thanks to two cancer organizations, friends and family members, the boys had so many presents that they weren't even able to open them all on Christmas day! The grandma's joined forces and created a Christmas lunch like no other - we are still trying to find recipes to use up all the left overs. It was fantastic to have both sides of the family here for Christmas!

The day after Christmas, we had to take Cameron in to receive a platelet transfusion, and two days later he needed a red blood cell transfusion, the transfusions seemed to have given Cameron a massive burst of energy and he is as happy and chatty as ever.

As I mentioned in a previous post, Cameron's feeding tube has caused us nothing but problems since it was put in 3 months ago. We finally received a decision from the transplant team, and they have decided that the best thing to do is to remove the tube. Well, that was a monumental waste of time and money! On one hand, I can't wait for it to be removed, it has caused Cameron so much pain and suffering, getting infected every time his counts drop. On the other hand, I wish that it had worked for him, it really would have been the best way to get food into him during his transplants. There are alternative ways to feed him during transplant, they can insert a feeding tube through his nose, he had this type of tube as a baby and even at 2 months old he was able to pull it out himself! The other method is called TPN feeding which is done intravenously. The problem with that is that it puts a lot of strain on his liver, which will already be taking strain from all the chemo that he will receive.  He will be admitted tomorrow to have the surgery to remove the tube and will start his final round of chemotherapy on Wednesday.  I still can't believe that he is almost done with the first phase of his treatment!

Here are a couple of photos of how we keep ourselves entertained in the hospital.

A bump in the road

Chemo number four seemed to go off without a hitch, other than one throwing up incident, it was pretty much smooth sailing.  The type of chemo that he got this time had to be hooked up to him for 72 continuous hours, unfortunately this meant that he couldn't leave the ward at all for his full hospital stay.  Poor little guy was pretty bored, but we managed to entertain him with wagon rides around the ward and LOTS of toys that we had brought from home.  He was in great spirits when he came home and was eating and drinking normally almost immediately.

Just as we were starting to think this chemo stuff is getting easier... yes, you guessed it, he got a fever!  What would be considered a mild temperature for a normal child is considered an emergency for a child with cancer, so when Cameron started to feel a bit warm on Friday afternoon, I started to pack the hospital bags.

It started out as a mild fever, not really high enough for us to go directly to the ER but definitely something that needed to be watched.  I immediately became completely paranoid and started obsessively taking his temperature every 15 minutes, I just new something wasn't right.  And sure enough, just as the traffic hit rush hour, Cameron's temperature spiked and we had to get him to the emergency room.

Frank was amazing and offered to sit through the emergency room with him and spend the night so that I could go home and take care of James.  I readily agreed as I detest the ER!  Poor Frank sat through 5 hours in the ER before Cameron was transferred to the main hospital as there were no rooms available on the Cancer ward.  By Saturday morning, Cameron's fever was so high that they had to delay giving him a blood transfusion until the fever was under control.  He was finally given blood and once that was done, he was transferred to the cancer ward.  He was put into isolation while we waited for the blood test results to come back so that we could discover the cause of the fevers.  He has had a runny nose for about a month, so I was concerned that he might have flu or RSV.  So far all of his blood cultures have come back negative, we are still waiting for one more to come back, but as long as that one is negative, we should be out of isolation by tomorrow. 

It appears that the cause of the fever is an infection in the G Tube (feeding tube) site - AGAIN!  This thing is starting to be a real pain in the rear end!  According to the nurses, some kids get an infection in the G Tube site every time their white blood cell counts drop after chemo.  Cameron's counts had been at an impressive 2900 on Wednesday, but by Friday when he got to the ER they had dropped to 100 and this morning they were at 0,01.  No wonder the child's body cant fight the infection.  He is clearly in a lot of pain.  He tries to sleep sitting up in a sort of kneeling position, with his head rested against me.  It seems like one of the only ways that he can get comfortable.  I hate seeing him like this, feeling sore and yukky, but I am so thankful that it wasn't something worse.  He is on antibiotics and pain medication, so at least he is on the mend.  We will be stuck in hospital until his white blood cell count comes back up.

James is missing his brother again, but we have given him a photo of Cameron (which he carries everywhere and kisses constantly) and he has started sleeping with one of Cameron's teddy bears.  It seems to have helped at least a little bit and James doesn't seem as depressed this time.  Thank God for Frank, he is such an amazing daddy and husband, not only did he spend two nights at the hospital looking after Cameron, he got home today and immediately took James out for a day of fun to take his mind off Cameron being away again.  They visited the pet store and the park and even had pizza for dinner.  Lucky boy!

Enormous Blessings

Sometimes it takes a crisis to open up our eyes to how blessed we really are!  I always knew that we had good friends and a loving, supportive family; but since Cameron's diagnosis, I have realized just how amazing people are - and not just our friends and family - but complete strangers too!

I am awestruck with how many calls, emails and facebook messages we have received. My neighbors and friends have brought us meals, as have families from James' preschool. We have been given gas (petrol) cards to help with the expense of getting to the hospital; friends from the other side of the world have sent gifts for the boys whilst others have helped with fundraising and have donated their time, helping me with James and sitting with Cameron at the hospital. Several people have generously donated money to Cameron's medical care. A few weeks ago, I found a parcel that had been left for the boys on the driveway, no name was attached and my efforts to track down who had left it were futile.  This morning, I logged into my bank account and found that someone had made an anonymous donation.  These are just a few of the amazing things that incredible people have done to help us!  Thank you, from the bottom of our hearts - THANK YOU!  You all mean so much to us and we really appreciate your support through these tough times.

Happy Thanksgiving!

I know I have been a bad BAD blogger over the last couple of weeks, but as usual, we have been very busy - in a good way! 

Cameron has spent a record number of days at home, only having to go back to hospital for one night, right after his last round of chemotherapy, to deal with his terrible nausea and vomiting.  Other than that, we have been a happy little family, all together under one roof.  Things actually started to feel normal again.  That's one of the worst parts of this treatment, we just start getting used to being at home, Cameron starts eating again and feeling better, then just as we get comfortable - BAM it's chemo time again!

Over the last two weeks, we really made the most of having Cameron home - we laughed in the face of danger (from germs) and tried to take the boys out to do some fun activities.  We spent a day at the children's museum in Atlanta and the boys had an absolute blast.  There were so many fun and educational things for them to explore, it was a great day out.  We also took the twins to church and out for breakfast, which was a bit of a challenge, but nevertheless, another good day.  As we get closer to Christmas, the boys' social calendar is filling up!  We have two birthday parties coming up next month and 2 Christmas parties organised by 2 different cancer charities. 

Cameron is going into hospital today for his fourth round of chemotherapy and unfortunately he will be there over the Thanksgiving holiday weekend.  Frank and I have our schedule planned out, bags are packed and we are ready to do this again!  Hopefully it will be quiet and uneventful for Cameron - but I'll keep you all posted, promise!

Christmas Cards

My amazing friend, Leigh Plimmer has created the most beautiful Christmas Cards to sell in order to raise money for Cameron.  The cards were designed by Iris Maria Salazar, Wayne Martin kindly donated the printing and Amy at Creatively Invited donated the envelopes. 

The deatails are as follows:

The cards are packaged in sets of 5 and will be 5.5" x 4.25" with standard A2 sized envelopes in your choice of one of the designs shown.

$10 if they are picked up from Leigh or $15 if orderd through the mail. Please contact Leigh by email at lplimmer@att.net if you would like to order some cards.

All proceeds will go to Cameron's medical costs.

The Cards come in 3 different designs (aren't they gorgeous?)

An awesome weekend!

It's amazing the things that we take for granted as parents, snuggling in bed with the children on a cold winter morning, taking a stroll in a park, teaching our little ones to ride a tricycle, stealing sloppy wet kisses... Well this weekend we did ALL of that and I loved EVERY SECOND! It was so "normal"! It was one of the few weekends that Cameron has been home since he was diagnosed. We had so much fun doing everyday things that I used to take for granted, it's amazing how ones life can change in a split second. Let's face it, cancer SUCKS, but it has taught me some very important lessons, every day that we have with our children in a monumental blessing, it's the little things in life that make us happy, some things - like having a perfectly clean house -are just not THAT important, especially if I could be doing something fun with the kids. I have also learnt who my true friends are and how blessed I am to have such amazing people in my life!

Speaking of amazing friends, on Friday night, our friends Anni and Neil held a fundraiser for Cameron. What a fantastic night! They held a raffle for two great prizes, a Teddy Bear like the one that Cameron carries with him all the time, donated by my dear friend Carol Martin and a photography session with Germaine Vlok, who has taken all of our family photos and is a truely a phenomenal photographer!

$700 was raised for Cameron and we are so grateful to everyone who came to support us and of course to Anni and Niel for hosting, and for all the people who donated food, wine and prizes. Thank you all so much!