We are two days into Cameron's first round of Immunotherapy and so far he has tolerated it reasonably well. I was warned that the medication that he is receiving will make him feel awful, flu-like with a lot of pain. What they didn't warn me about was that my child would look like a spotted blow fish after a couple of hours of treatment. One of the common side effects is a rash, Cameron has taken it to a whole new level. The poor child is covered in itchy red spots that subside with the help of an antihistamine, but reappear long before his next antihistamine dose is due. He is also retaining quite a lot of fluid, he looks like a puffy little marshmellow and I really have to restrain myself from pinching his chunky little cheeks!
In all seriousness though, he does seem to be in pain, but it appears to be well managed by his continuous morphine pump (PCA) and nerve pain medication. He slept from 10am yesterday until about 8am this morning, only waking occasionally to take a few sips of formula and then drifting off again. The sleep seems to be getting him through this and his regular antihistamine doses really help keep him sedated. When he woke up this morning, he told me that he had lots of "owies" and asked me to kiss his toes to make them feel better.
Although some bloating is normal, he is being watched very carefully to make sure that he doesn't retain too much fluid. Excessive fluid retention can affect his lungs which can be extremely serious. His blood pressure is also being closely monitored as the medication can cause it to drop dangerously low. Thank goodness we have some fantastic nurses and they are very much on top of everything. Cameron's vitals are taken every 15 minutes for the first hour after he starts the medication and then every hour after that until the infusion is completed.
The recommended time frame to administer his medication is over 10 hours (every day for 4 days), however, if for some reason he has a severe reaction to the medication, the infusion can be paused or slowed down to go in over 20 hours. Whatever is left over after the 20 hours is up can not be administered. Cameron was able to stay on course yesterday and got all of his medicine in the 10 hour time frame.
He seems to be doing just as well today, and is currently napping peacefully. Hoping that the rest of our stay will continue to run smoothly.
Wednesday, June 27, 2012
Monday, June 18, 2012
Results Are In!
It's been one of the longest weeks of our lives! Last week, Cameron had a CT scan, an MIBG scan, a urine analysis and a bone marrow aspiration. Today we got the final results...... every one of his scans were clear!! There was no cancer detected on any of the tests! We are over the moon! We still have a long road ahead of us, Cameron will be tested every few months initially and then eventually he will be tested once a year. But for now, we are celebrating this huge victory over this terrible disease. When Cameron was initially diagnosed, his bone marrow was over 90% affected with Neuroblastoma and his cancer had spread all over his body, to get a clear result now is phenomenal.
Cameron continues to do very well. He is still eating like a horse, and he and James are playing so beautifully together - it warms my heart to watch them. He is talking up a storm, adding to his vocabulary almost daily. He has also become fiercely independent, he insists on doing EVERYTHING himself, including wanting to make his own breakfast. He loves to help me around the house, even though a quick 5 minute task can end up taking me half an hour with his help, it's such fun to watch him "cleaning" for mommy. Most of all though, he is being a normal toddler, throwing tantrums, using the word "no" at every opportunity and bossing his brother around. It's exhausting, frustrating and WONDERFUL! I am so grateful that he is well enough to act like a normal 2 year old.
We meet with Cameron's oncologist on Wednesday to discuss his test results. Cameron will then be admitted to hospital on Monday to start his anti-body therapy, the final phase of his treatment plan. He will be the first patient to receive anti-body therapy at Scottish Rite Children's Hospital (although their sister hospital, Egleston Children's Hospital, has been administering the treatment for many years). We are confident that he will be in great hands, even so, the hospital has organised staff from Egleston to spend the week at Scottish Rite to oversee the procedures. We are very fortunate to have such amazing care for Cameron!
Cameron continues to do very well. He is still eating like a horse, and he and James are playing so beautifully together - it warms my heart to watch them. He is talking up a storm, adding to his vocabulary almost daily. He has also become fiercely independent, he insists on doing EVERYTHING himself, including wanting to make his own breakfast. He loves to help me around the house, even though a quick 5 minute task can end up taking me half an hour with his help, it's such fun to watch him "cleaning" for mommy. Most of all though, he is being a normal toddler, throwing tantrums, using the word "no" at every opportunity and bossing his brother around. It's exhausting, frustrating and WONDERFUL! I am so grateful that he is well enough to act like a normal 2 year old.
We meet with Cameron's oncologist on Wednesday to discuss his test results. Cameron will then be admitted to hospital on Monday to start his anti-body therapy, the final phase of his treatment plan. He will be the first patient to receive anti-body therapy at Scottish Rite Children's Hospital (although their sister hospital, Egleston Children's Hospital, has been administering the treatment for many years). We are confident that he will be in great hands, even so, the hospital has organised staff from Egleston to spend the week at Scottish Rite to oversee the procedures. We are very fortunate to have such amazing care for Cameron!
Monday, June 11, 2012
I know, I know, I am a terrible blogger! I'm sorry that I haven't updated the blog in ages - but we have been far to busy having fun!
Cameron is doing VERY well! He has gained some weight and is now up to 11kgs (24 pounds). There are days that he eats more than James, and we have taken him off all of his appetite stimulants, so he is doing this all on his own. He is the sweetest, happiest little boy! His new hobby is bossing poor James around. He calls James "baby" (even though James is twice his size and 3 minutes older), and poor "baby" gets told off regularly! It's so funny to watch them interact.
Cameron completed his radiation and suffered almost no side effects. Although he was nervous in the beginning, he soon became a pro and would even hold his own mask for his sedation.
His antibody and white blood cell counts have been good lately, so we have allowed him to be a two year old. We have made a few trips to the park and even allowed him to visit Toys-R-Us this weekend. For a boy that spends most of his time looking at the same hospital fish tank, a trip to Toys-R-Us is like going to Disney Land.
We have really been trying to make the most of our time together as a family, because he is due to go back to hospital on June 25th to begin his Anti-Body Therapy - the final phase of his treatment.
As much as we all love having Cameron at home, James is especially thrilled to have his partner in crime around. He has relaxed a lot and is back to being his old self again, loving and gentle with far fewer tantrums. I hate taking Cameron away from him again when he has just settled down. The good news is that Cameron will only be going into hospital for a week at a time - the bad news is that it's every month for the rest of this year.
This week, Cameron will be having scans to check if he has any new or residual cancer left, he will also have a bone marrow aspiration to check that his bone marrow is clear of cancer. We need clear test results to start his antibody therapy. Antibody therapy is one of the most important parts of Cameron's treatment, it will improve his prognosis by about 15%, which is substantial. It's a very painful, unpleasant process, that can have severe side effects - but it is a vital part of this treatment.
Naturally, this is a very stressful week for us, as much as I want to be positive and confident that he is getting better - there is that tiny voice in my head that says "what if he isn't". It's terrible - I try to banish that voice any time it pops up, but it's a reality - this terrible disease can come back at any time, not matter how much chemo we throw at it! In the mean time, we are keeping our fingers and toes crossed and hoping for perfect and clear results this week!
I promise to blog as soon as we have all the results and we know what the next step is.
Cameron is doing VERY well! He has gained some weight and is now up to 11kgs (24 pounds). There are days that he eats more than James, and we have taken him off all of his appetite stimulants, so he is doing this all on his own. He is the sweetest, happiest little boy! His new hobby is bossing poor James around. He calls James "baby" (even though James is twice his size and 3 minutes older), and poor "baby" gets told off regularly! It's so funny to watch them interact.
Cameron completed his radiation and suffered almost no side effects. Although he was nervous in the beginning, he soon became a pro and would even hold his own mask for his sedation.
His antibody and white blood cell counts have been good lately, so we have allowed him to be a two year old. We have made a few trips to the park and even allowed him to visit Toys-R-Us this weekend. For a boy that spends most of his time looking at the same hospital fish tank, a trip to Toys-R-Us is like going to Disney Land.
We have really been trying to make the most of our time together as a family, because he is due to go back to hospital on June 25th to begin his Anti-Body Therapy - the final phase of his treatment.
As much as we all love having Cameron at home, James is especially thrilled to have his partner in crime around. He has relaxed a lot and is back to being his old self again, loving and gentle with far fewer tantrums. I hate taking Cameron away from him again when he has just settled down. The good news is that Cameron will only be going into hospital for a week at a time - the bad news is that it's every month for the rest of this year.
This week, Cameron will be having scans to check if he has any new or residual cancer left, he will also have a bone marrow aspiration to check that his bone marrow is clear of cancer. We need clear test results to start his antibody therapy. Antibody therapy is one of the most important parts of Cameron's treatment, it will improve his prognosis by about 15%, which is substantial. It's a very painful, unpleasant process, that can have severe side effects - but it is a vital part of this treatment.
Naturally, this is a very stressful week for us, as much as I want to be positive and confident that he is getting better - there is that tiny voice in my head that says "what if he isn't". It's terrible - I try to banish that voice any time it pops up, but it's a reality - this terrible disease can come back at any time, not matter how much chemo we throw at it! In the mean time, we are keeping our fingers and toes crossed and hoping for perfect and clear results this week!
I promise to blog as soon as we have all the results and we know what the next step is.
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