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.
Wednesday, October 19, 2011
Saturday, October 15, 2011
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.
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.
Thursday, October 13, 2011
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!
Tuesday, October 11, 2011
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.
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.
Thursday, October 6, 2011
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!
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!
Tuesday, October 4, 2011
Sunday, October 2, 2011
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.
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.
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