Finally some GOOD news!

Last week, while Cameron was being treated in hospital for his G Tube infection, he had a bone scan to look at whether the first two rounds of chemotherapy had had any effect on the cancer that is in his bones, or if the disease had spread any further.  The results were better than the doctors had expected, Cameron's scan shows "significant improvement" in the bone cancer!  We are thrilled!  Of course we know it's early days and that Cameron still has a long road to travel and many more treatments to complete, but it's great to know that he is on the right path to recovery!

One of our biggest concerns, when Cameron got the infection around his G Tube, was that it would jeopardise his stem cell harvest.  Luckily, he was discharged from the hospital in time and he was able to have the harvest done yesterday.  He was hooked up to a machine that looked like something out of the movie Back To The Future, and began the 4 hour harvest process.  During the process, Cameron's heart rate started to drop a bit and then rise to a normal level, and then drop again.  Of course, in true Cameron style, he likes to keep his doctors on their toes, he had an EKG done to be sure that he wasn't in any danger, and it showed that his heart was fine.  The results of the harvest were fantastic, they needed to collect 12 million cells for his up coming transplant and they were able to get 23 million!



It's the boys' birthday this weekend and we are throwing them a little party, I am so pleased that Cameron is going to be home to enjoy it with James.  I am so excited about the party, you would swear it was MY birthday!  I promise to post photos as soon as I can so that you can see all of the festivities.

Infection

It feels like my blog posts keep starting the same way... "we are back in hospital"!

Last week, before his second round of chemo, Cameron had a G Tube (a feeding tube that is placed directly into the stomach) placed. We had gone back and forth about whether this was the right decision, the GI doctors had wanted to put a G Tube in when Cameron was 2 months old due to his lack of eating and low weight gain, but we fought it and eventually got him to drink his bottle and put on some weight. But, now the situation had changed, as Cameron goes through his intense chemotherapy protocol and eventually has his stem cell transplant, there is a chance that he will get sicker and less able to eat, we decided that the G Tube would be our "insurance policy". We would still encourage him to eat, but we could use the feeding tube as a back up on days when he didn't have much of an appetite. Of course, we were aware of the infection risks, but we didn't think that we would have to be readmitted so soon after his last discharge.

So here we are, back at CHOA. He has a rather sever and gross looking infection and ran a fever for a few days. We have been here for a total of 6 days so far and we are praying that he will be home for his and James's second birthday on Sunday. More importantly, we are praying that he is able to have his stem cell harvest that was scheduled for this week. His current infection can cause us to have to delay the stem cell harvest until after his next round of chemo. Its not the end of the world, but from a quality point of view, it would be better to harvest now, before his next chemotherapy.

We should have more of an idea of what our next steps will be, later today.

A quiet week...

So far it has been about as normal a week as one could hope for at our house. Cameron was discharged from hospital on Monday after his latest chemo dose was administered early that morning. This visit went a lot better than his first one, a bit more nausea but no fevers. He was also far more lively and even made a few new friends.

James is thrilled to have his brother home and the boys have been quick to pick up their usual routine of waking mom and dad up at the crack of dawn for their morning milk and cartoons. Mom has been great at administering Cameron's medicines and keeping the little man on his strict and complicated schedule - we have 4 pages of instructions on the refrigerator door to keep track of all of it. Grandma keeps the household running in an orderly fashion, which can be quite challenging with two energetic boys.

This week we need to keep a close eye on Cameron's blood counts which will drop and then stabilize and start climbing as we get closer to the weekend. The monitoring requires that his home care nurse draw blood samples every couple of days for analysis. Things will get really busy in a weeks time when he has his blood stem cells harvested. Once his counts are up they will be extracted and frozen to be transplanted back into his body in January. He will also have his bone marrow tested again to check on the effectiveness of the chemo therapy he has received to date.

Cameron was on top form last night, he had brought up most of his formula earlier in the evening so a dose of medicine was ordered to control his nausea. The medicine also happens to put Cameron in a very good mood so he was playing, singing and dancing well into the night - eventually Dad had to climb into the crib with him to get him settled, we finally fell asleep just before midnight, neither Cameron nor Dad have partied that hard in a very long time.

Today is day 3 of his second cycle and he seems to be tolerating the chemotherapy well so far. His first day was a bit tough because of the g-tube insertion (a g-tube is designed to allow feeding directly into the stomach when Cameron is not able to take in enough nutrition orally). The insertion required punching through some stomach muscles, so was quite painful for a while. The anticipated hair loss is setting in but Mom had the foresight to give the little man a #2 haircut so we have had a chance to get used to his new look, which he carries really well - a bit like Charlie Brown with a dash of Vin Diesel.

Chemo finishes on Monday so we should be out of here in no time, there is much to look forward to over the next two weeks - trick or treating, birthdays and lots of spoiling by Grandma. James got some practice at collecting candy at his schools trunk or treating event last night, I'm sure he will pass on his new skills to Cameron in no time.

Thank you everyone for your messages of encouragement and continuing support, although we sometimes feel overwhelmed we have never felt alone.

Photo Shoot

We were so fortunate to have our incredibly talented friend, Germaine, take the most beautiful photographs of Cameron before he lost his hair.  Here are a few of the photos that she took, please visit her website took look at the rest of Cameron's photos by clicking HERE. 

Thank you, Germaine, for capturing these precious moments for us!

Getting ready for chemo number 2!

I haven't updated the blog for a while, but as the saying goes "no news is good news". We have had a wonderful and most importantly, uneventful week at home with Cameron.

We were extremely blessed to have my mom stay with us for 3 weeks and I was so sad to say goodbye to her on Saturday. She was an enormous help while Cameron was in hospital and James adores her. Thank goodness she will be back in December and will stay for 3 months.

Luckily, Frank's mom has come over to help us for a few weeks, so it's a relief to know that James is with someone he loves and she is a great help too. We are so fortunate to have such great families that literally dropped everything to come over and help us!

Cameron had to go into hospital today for a blood and platelet transfusion, a long and boring process, but at least it is minimally invasive. He played for the first part with his new friend, Sabastian, and napped through the rest of it.

Tomorrow, he will have surgery to put in his feeding tube (G tube). Although he is eating well at the moment and seems to be responding appropriately to the appetite stimulant that he is on, the doctors feel that it would be safer to put the tube in, in case he loses his appetite and starts losing weight, especially when it comes time for his stem cell transplant in January. He will be admitted after his surgery and will start his second round of chemotherapy on Thursday. If all goes well, he should be out of hospital early next week.

Brotherly Love

We are so excited to have Cameron home with us and doing well! But no one is more excited than James. It's so amazing to see the bond that twins have and the last two days have really showed us how close these little guys really are.

While Cameron was in hospital, James would look for him. He would search each room every morning and when he came home from preschool. Although he seemed to be adjusting, it was so obvious that he missed his brother.

Yesterday, James took his role as "big" brother very seriously. After riding in their wagon (grandma pulling them up and down the deck), James climbed out to go and get his lunch. He immediately tried to pick Cameron up and take him out of the wagon, because Cameron is not quite strong enough to get himself out yet. It was the sweetest thing I have ever seen. Then, while Cameron was drinking his bottle, James stood next to him and gently stroked his hair and chatted to him. There has been NO fighting over toys, in fact, James brought Cameron his favorite toy to play with!

I am sure they will return to normal soon and starting fighting over everything, but for now I am really enjoying the peace and love that we have in our house.

We are very excited to have our dear friend and amazing photographer, Germaine Vlok (www.germainevlok.com)coming to take some photos of Cameron today before he completely loses his hair. It started falling out last night, which makes me very sad, but at least we know the chemo is working.

I will post some of the photos of our beautiful boy soon!

Guess who came home today :)

Our weekend

We are winding down a rollacoaster of a weekend. Cameron was home just one night last week when he had to return to CHOA Scottish Rite with fevers. We had hoped to have him home again in no time but his fevers seem to recur and with his white blood cell count still so low his doctors have kept him as an inpatient while he continues to receive IV antibiotics and platelets today.

The side effects of his first chemo cycle are distressing for him and ourselves as parents, as is his inability to keep much food and formula down. The nurses have been fantastic in reassuring us that these responses are typical for chemo patients but it is still tough to watch him go through it.

We brought James down to the hospital this afternoon when Nikki & I switched shifts. It is amazing to see things through a childs eyes, to us an elevator ride is a way to avoid stairs - to James it's this really cool room that has tons of things to press and then opens into a totally different place - he always squeals with delight when the doors open. He and Cameron had a good time together although we were careful not to let James too close and limited contact to hand touching.

We have started to develop a routine to our hospital visits, the bag is ready and waiting with the overnight essentials and last nights left over dinner is packed in a container to provide an escape from the hospital canteen. To those of you who have provided and continue to provide meals thank you so much. Good nutrition is the first casualty of crisis and we would no doubt have suffered the consequences but for your efforts.

We are hoping that the latest bout of fevers is in response to the platelets Cameron received this afternoon, if his labs come back infection free he may just get home tomorrow.