As I mentioned in my last blog post, Cameron was unable to start his second round of Antibody Therapy because his liver enzymes were too high. The treatment was initially delayed by a week and he was retested on Thursday, with the hope of starting this coming Monday. Unfortunately, we were disappointed to discover that his liver enzymes had barely moved. They had only dropped by 6 points, from 369 to 363. In order for Cameron to start the next round, the enzymes need to be below 250. This would not be a problem if time wasn't so critical. The Antibody protocol is extremely time sensitive. The doctors are not happy to delay his second round by more than two weeks, so if by next Thursday we haven't seen a drastic improvement in the enzymes, I have been told that the doctors will need to contact the chairperson heading the study to find out how to proceed. There is a chance that Cameron could be removed from the study and not allowed to get the Antibody Therapy. This would be devastating!! Antibody Therapy is vital to Cameron surviving this disease, it is the most important part of his treatment.
The logical part of my brain knows that I am stressing prematurely, two days off the medicine is not enough time for his enzymes to come down sufficiently to be retested, next Thursdays test will be a much better indicator of how his liver is performing. The rest of my brain, however, has gone into complete panic mode. I find myself crying randomly, like a did when Cameron was first diagnosed. I am short tempered with everyone around me and I feel like I just can't cope with this. We can't have more bad news, we just can't.
Frank contacted a liver specialist that he knows and he was able to give us some advice on what we can do to help flush his liver and get it to recover a bit quicker, all of the things he mentioned can be easily added through Cameron's diet - which is good news as we are not prepared to give him any type of supplements or other remedies until we have discussed them with his oncology team.
Even if Cameron recovers and manages to get his second round of Antibody Therapy, this could easily happen again and cause more delays and possible expulsion from the study. He is just so little and his poor liver has been put through the wringer over the last year with all the medications that he has been on. We can only hope and pray that he improves and is able to continue with his treatment.
Please keep him in your thoughts and prayers this week and cheer for those enzymes to go DOWN DOWN DOWN!
Saturday, July 21, 2012
Wednesday, July 18, 2012
Delays
Cameron has been doing very well since completing the first round of his Antibody Therapy. Initially, when he was first discharged from the hospital, he suffered from some withdrawal symptoms from the morphine that he had been on. He lost 1 kg (2.2 pounds) in 2 days and felt generally yukky. Once we got him on a methadone wean, he seemed to perk up and recovered quickly. He regained his appetite and his usual lust for life was back. He has gone from strength to strength and is back to his normal, fun loving, 2 year old self.
We were able to take the boys out a few times over the last two weeks to do some fun activities, including a trip to Lego Land and they even attended a birthday party at the Georgia Aquarium.
Cameron's hair is growing back! He no longer looks as sickly as he did a few months ago, he has eyelashes and eyebrows and a fair amount of fuzz on his little head. I can't help myself and find myself stroking the soft fuzz at every opportunity, even James is a fan of rubbing Cameron's new locks. Weirdly, his hair is coming back much darker than it was before, I can't wait to see what it looks like when he has a full head of hair again.
Cameron was supposed to start his second round of Antibody Therapy this week. We were admitted and checked into his room, but before we had time to settle in, I was informed that Cameron's liver enzymes were too high for him to start the treatment. A normal person's liver enzymes are around 50, treatment can start as long as the enzymes are below 250 - Cameron's were 369! After his first round of Antibody, it was noted that his enzymes were elevated, they were over just 250 at that stage and we needed to wait a few days before he could start the medication that he takes at home. The enzymes came down to a point that we could start his medication, but they were still on the high side. As a result of not letting them recover completely, the medication that he has been taking has pushed them way up. We were sent home and he will be tested on Friday to see if he will be able to start round two on Monday, or if we will have to wait another week.
It's so frustrating not being able to plan properly! I need to sort out care for James, the boys are supposed to start school in 6 weeks, my mom and sister both had trips planned to visit us, and now everything has to change. If one treatment is delayed by a week (or two), then all the treatments get pushed back, and of course, this could happen again - his liver enzymes could cause further delays down the road.
Besides the logistical nightmare that this causes, I am more concerned with what the impact could be on his overall treatment if this therapy is delayed and what the long term effects on his liver might be.
You would think that by now I would have learned that, in the world of cancer, you can never make plans and should always expect the unexpected. Oh well, the bright side is that I have had another week at home with both of my precious babies and I've had an extra week to fatten Cameron up.
Here are a few photos from the last couple of weeks:
We were able to take the boys out a few times over the last two weeks to do some fun activities, including a trip to Lego Land and they even attended a birthday party at the Georgia Aquarium.
Cameron's hair is growing back! He no longer looks as sickly as he did a few months ago, he has eyelashes and eyebrows and a fair amount of fuzz on his little head. I can't help myself and find myself stroking the soft fuzz at every opportunity, even James is a fan of rubbing Cameron's new locks. Weirdly, his hair is coming back much darker than it was before, I can't wait to see what it looks like when he has a full head of hair again.
Cameron was supposed to start his second round of Antibody Therapy this week. We were admitted and checked into his room, but before we had time to settle in, I was informed that Cameron's liver enzymes were too high for him to start the treatment. A normal person's liver enzymes are around 50, treatment can start as long as the enzymes are below 250 - Cameron's were 369! After his first round of Antibody, it was noted that his enzymes were elevated, they were over just 250 at that stage and we needed to wait a few days before he could start the medication that he takes at home. The enzymes came down to a point that we could start his medication, but they were still on the high side. As a result of not letting them recover completely, the medication that he has been taking has pushed them way up. We were sent home and he will be tested on Friday to see if he will be able to start round two on Monday, or if we will have to wait another week.
It's so frustrating not being able to plan properly! I need to sort out care for James, the boys are supposed to start school in 6 weeks, my mom and sister both had trips planned to visit us, and now everything has to change. If one treatment is delayed by a week (or two), then all the treatments get pushed back, and of course, this could happen again - his liver enzymes could cause further delays down the road.
Besides the logistical nightmare that this causes, I am more concerned with what the impact could be on his overall treatment if this therapy is delayed and what the long term effects on his liver might be.
You would think that by now I would have learned that, in the world of cancer, you can never make plans and should always expect the unexpected. Oh well, the bright side is that I have had another week at home with both of my precious babies and I've had an extra week to fatten Cameron up.
Here are a few photos from the last couple of weeks:
Playing arcade games at the clinic with Cameron's oncologist, Dr. George!
Some light reading on the potty
Enjoying a bite to eat with Dad
At the aquarium
Cameron LOVED having his face painted at the aquarium party.
Wednesday, June 27, 2012
Antibody Therapy - Day 2
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.
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.
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.
Saturday, May 26, 2012
Fun in the Sun!
Cameron has almost completed the radiation phase of his therapy, he has two more sessions on Tuesday and Wednesday. So far he has tolerated the radiation quite well and soon the 6am drives to Egleston will be over and we will remove all of his radiation markers (he has stickers that his doctors use to target the radiation beams at his primary tumor site). In early to mid June Cameron will have more scans and imaging which we are hoping come back clear so that he can begin anti-body therapy towards the end of the month.
In the meantime we have been making the most of the home time and decided to brave our first family camping trip at Stone Mountain Park. It was an awesome experience. The boys had an absolute blast and played so hard that they were both fast asleep before sunset leaving Mom and Dad some downtime around the campfire. The next day we were joined by friends for a picnic and a fun-filled day at the park.
This weekend we visited the Australia Festival at the polo fields in Forsyth, we anticipated hot weather so we headed out early and were able to do most of the stuff that we wanted to before the heat of the day set in. The boys highlight was seeing and touching some of the Aussie wildlife, James has a real passion for animals and didn't want to leave. We really enjoyed just watching them.
In the meantime we have been making the most of the home time and decided to brave our first family camping trip at Stone Mountain Park. It was an awesome experience. The boys had an absolute blast and played so hard that they were both fast asleep before sunset leaving Mom and Dad some downtime around the campfire. The next day we were joined by friends for a picnic and a fun-filled day at the park.
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| Nothing like an ice cream on a hot day |
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| Dads little helpers get stuck in with pitching the tent |
This weekend we visited the Australia Festival at the polo fields in Forsyth, we anticipated hot weather so we headed out early and were able to do most of the stuff that we wanted to before the heat of the day set in. The boys highlight was seeing and touching some of the Aussie wildlife, James has a real passion for animals and didn't want to leave. We really enjoyed just watching them.
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| Hey James - lets check that out |
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| James and the Wallaby in deep conversation at the Australia festival |
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| Fun in the Sun |
Sunday, May 13, 2012
Mothers Day
Things have been busy in our household lately! With Cameron home for the last 2 weeks, we have been making the most of our time together. James is starting to relax a little bit and is loving having his brother home for such a long period of time. We have been to the park to feed the ducks, we went to see the fire engines at the local Public Works event and we have played and played and played. I have been working on decorating the boys new room with "big boy" beds (photos soon). Cameron has been doing remarkably well and and we couldn't be happier with his progress.
Tomorrow Cameron will start radiation. He will be radiated everyday for the next 2 and a half weeks and will have to be put under general anesthetic each time - that means he can't have anything to eat or drink from midnight, every night for the next 12 days. This is NOT going to go over well! Cameron, my skinny little boy, has found his appetite - in a BIG way. His recent acquisition of language has brought with it an easy way to demand every desire and be understood, a major score for a two year old. Much to our surprise, most of the demands have been for food. Of course, we are thrilled and I really hope that he gains a bit of weight.
Today we celebrated Mothers Day - to some it's just another day created by Hallmark to sell cards, to me it's a day that I longed to celebrate for many years. Every year on Mothers Day I cried bitterly that I wasn't a mommy, my heart ached to hold a baby in my arms and feel the love that only a mother can feel for a child - a love so deep that you would die for that person, without a seconds thought. But for years my arms were empty and my heart was broken. I hated Mothers Day, I hated my stupid body for not giving me what my heart desired most - the most primitive of things - a child. After many years of trying and finally my beautiful boys came into my life. It felt incredible as I celebrated my first Mothers Day, overjoyed that my dream had come true, with not one but two perfect bundles of immense joy. I'm not going to pretend that every moment of having children has been magical and wondrous - by no means. It's been tough, I had no idea what hard work being a mother is. Sleepless nights, screaming tantrums, a house that constantly looks like a tornado ripped through it - and that's just this week. But it's the moments that make you forget all that, when you look at them while they are sound asleep, or when they laugh uncontrollably at you for playing peek-a-boo with them, or when they play happily together without fighting over a toy - it's those moments that all mothers savour. So, today as I celebrated Mothers Day with my beautiful boys, I drank in every moment - life is so fragile and sometimes I think I get so wrapped up in the day to day madness of our busy schedule that I forget to stop and appreciate what I have. I am grateful every second that I have been given with my children, I pray that there are many more Mothers Days in our future and that I enjoy each one as much as I have enjoyed today.
Tomorrow Cameron will start radiation. He will be radiated everyday for the next 2 and a half weeks and will have to be put under general anesthetic each time - that means he can't have anything to eat or drink from midnight, every night for the next 12 days. This is NOT going to go over well! Cameron, my skinny little boy, has found his appetite - in a BIG way. His recent acquisition of language has brought with it an easy way to demand every desire and be understood, a major score for a two year old. Much to our surprise, most of the demands have been for food. Of course, we are thrilled and I really hope that he gains a bit of weight.
Today we celebrated Mothers Day - to some it's just another day created by Hallmark to sell cards, to me it's a day that I longed to celebrate for many years. Every year on Mothers Day I cried bitterly that I wasn't a mommy, my heart ached to hold a baby in my arms and feel the love that only a mother can feel for a child - a love so deep that you would die for that person, without a seconds thought. But for years my arms were empty and my heart was broken. I hated Mothers Day, I hated my stupid body for not giving me what my heart desired most - the most primitive of things - a child. After many years of trying and finally my beautiful boys came into my life. It felt incredible as I celebrated my first Mothers Day, overjoyed that my dream had come true, with not one but two perfect bundles of immense joy. I'm not going to pretend that every moment of having children has been magical and wondrous - by no means. It's been tough, I had no idea what hard work being a mother is. Sleepless nights, screaming tantrums, a house that constantly looks like a tornado ripped through it - and that's just this week. But it's the moments that make you forget all that, when you look at them while they are sound asleep, or when they laugh uncontrollably at you for playing peek-a-boo with them, or when they play happily together without fighting over a toy - it's those moments that all mothers savour. So, today as I celebrated Mothers Day with my beautiful boys, I drank in every moment - life is so fragile and sometimes I think I get so wrapped up in the day to day madness of our busy schedule that I forget to stop and appreciate what I have. I am grateful every second that I have been given with my children, I pray that there are many more Mothers Days in our future and that I enjoy each one as much as I have enjoyed today.
This was taken as we were leaving the Ronald McDonald House - Can you spot Cameron?
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