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.
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