On January 30, we spent the night at the Hospital to do the test for hypo-glycemia. As promised, Dr. Jassass came around 10 pm to check on you and to tell me what we will do. She sat and talked to us for quite a while, while you sat on the bed and ate jellies. Dr. Jassass told you that you can eat them that night, but after that it would be best if you only ate them during the day. At 2am I woke you up for the corn starch and Ashley, our nurse came in the room to do a glucose level check. I got your corn starch ready and you asked me if Ashley would give it to you. So, she sat beside you and gave you the corn starch. Michael came in the room to see you. You remember Michael?! 'Monkey-Michael' :) When you were first diagnosed, Michael used to pretend he's a monkey, make all the sounds, just to make you smile. While Michael was in the room, you asked me for ham, so I went to buy you a ham sandwich. You stayed with Michael, which was surprising, but even more surprising was the fact that apparently, you talked to him all the time that I was out of the room. You are so grown up! :)
At 8am Dr. Jassass was back in your room, doing glucose level checks. It was still over 4. We did another check at 10am and another one at 12pm. At this point, it started going down. It was 3.6. Dr. Jassass took the blood at the lab to measure it so we know exactly what it was. I went outside for a coffee and on my way back, Dr. Jassass walked past me, very hurriedly and just told me the glucose level at the lab was 2.8! I walked in the ward just behind her and she was loudly calling Sarah, our day nurse and told her to come and take blood right away so then we can feed you and bring the glucose level up. Daddy told me that is really low, because you were very lethargic and very thirsty. Daddy was right. From the time they checked the first blood sample until the second one, it was 12 minutes! In 12 minutes it went from 2.8 to 2.2. We gave you some orange juice right away and some chicken soup and after that you were very tired, as always when your glucose level drops. While you were sleeping, Dr. Jassass came to talk to us, together with her professor, Dr. Vandermuler. They both said that all the results that they had so far were good, so they are sure that you are hypo-glycemic because of the 6MP. But the growth hormone is a bit low. Which could be either the cause or the effect of hypo-glycemia, they do not know. Dr. Jassass also said that the growth hormone fluctuates all the time, so we might just not have caught it at it's peak. But we'll check it again the next time you get accessed in clinic, next Thursday.
February 2, 2012:
We went to clinic for week one treatment and prescriptions. Even though Andrea was not the charge nurse, she came and said that the counts were too low for treatment. The platelets were under 100, which means they can not do treatment, as there is a risk of bleeding.
Dr. Breaky came in the room to talk to us and asked what our opinion was where the dose of 6MP is concerned. We told her that we think it has to be lowered from 12 pills per cycle to 10.5 pills per cycle or even 9. She agreed to go even with 9 pills per cycle.
On Feb. 9 we had the same conversation with Dr. Breaky and after that we went to do the bone density test. We had to come back upstairs to clinic for the treatment and while Andrea was doing your treatment, Dr. Athali and Paula, the pharmacist walked into the room. We had a long conversation with them. Dr. Athali kept saying that the increase of the dose was valid, while we argued the opposite. I asked her to never again send a resident into the room to assess you, because they don't have the knowledge or the experience necessary to take such decisions. She explained that McMaster is a University Hospital, but they do have to respect our wishes and she will not send a resident in the room again. A lot of things have been said in that room that day. The Doctor even implied at some point that we might not give you the prescribed dose at home. I did make it very clear that we do not play with your medication and if we are not comfortable with thing we will let them know, as we did so far, and we will take a decision together. She also said that the hypoglycemia is not caused by the 6MP and that it was only a coincidence that we went hypoglycemic when the dose of 6MP was increased. We told her that Dr. Jassass is the research endocrinologist and she told us that the 6MP is, in fact, the cause of your hypoglycemia. She still argued her point, telling us that Dr. Jassass is actually talking about an ALL medication and she, Dr. Athali knows more about it. While I do agree with that, I told her that the 6MP might be an ALL medication, but Dr. Jassass was not telling us what it does or doesn't do for ALL, but she was talking from an endocrinology point of view. It's so very frustrating sometimes, we just feel like Don Quijote, we talk, and talk and no matter what we say it feel like it just falls on deaf ears. Everybody listens, nobody hears! Anyway, bottom line is that the dose was decreased by 20%, as per protocol. Dr. Athali said that you are part of the research, so they have to follow protocol. I told her that I will take you off the research that instant and asked her if that would make a difference. The answer was no. I asked her why did she even bring up that fact and I got no answer. Daddy said that he thinks that they might have misunderstood our requests and they might think that we ask them to decrease the dose dramatically. Well, that is not the case. We do have your best interest in mind. We only demanded (yes, demanded) the dose to be decreased to where you can tolerate it. We do know the main goal of all this is to treat leukemia, but we can not damage everything else in the process.
Dr. Jassass ordered all the tests to be done, to check the level of 6MP left in your blood (2 weeks from the last dose; if the level is still too high, it means that you do not metabolise it and it would have to be decreased again, because you are too sensitive to it), to check the growth hormone again, to check alanine level to make sure everything is fine.
At the clinic on Feb. 16, Dr. Jassass came upstairs and said that all the results are fine, (except the alanine which is a bit low; she said that hypoglycemic patients all have low alanine, but they don't know if that's a cause or an effect); she is just waiting for the growth hormone results, but the chart tells her that you grew 2 inches in the last 6 months, so she is very reassured that there is nothing wrong with that either. She should have the results by Tuesday and she'll call to let us know.
The glucose level seems better lately. We still wake up once a night for corn starch, but now in the morning is over 5, which is great! We used to take 4 measures of corn starch every night at bed time and that would last for 12 to 14 hours. Now we are taking 8-9 measures at bed time and 7-8 at 2am. We will start decreasing the 2am dose gradually. We'll go down to 6 measures for a week and then down to 4 and hopefully soon we can safely eliminate the midnight dose and you can sleep all night. You must be so tired, my love! You even went back to afternoon naps, which you hadn't since last summer. Oh, soon it will all be done and you can have a normal childhood. 5 months and 2 day from today the treatment will be over! I am thinking about many things. I am considering the dex, we need to talk to the doctors about it. I will tell you all about that after we talk to them.
And on a happier note, I am already thinking about the 'huge tea party' that you want when treatment is done. Since is going to be a fancy-dress party, we will make it 'girls only!' :) So far, I am thinking: Vienna, Alex, Lauren and Rachel, Kingsley. We just have to go look for some really fancy tea cups and later on for a really fancy dress and hat. Oh, we love you very much and Mommy is really looking forward to our tea party. :)
February 2, 2012:
We went to clinic for week one treatment and prescriptions. Even though Andrea was not the charge nurse, she came and said that the counts were too low for treatment. The platelets were under 100, which means they can not do treatment, as there is a risk of bleeding.
Dr. Breaky came in the room to talk to us and asked what our opinion was where the dose of 6MP is concerned. We told her that we think it has to be lowered from 12 pills per cycle to 10.5 pills per cycle or even 9. She agreed to go even with 9 pills per cycle.
On Feb. 9 we had the same conversation with Dr. Breaky and after that we went to do the bone density test. We had to come back upstairs to clinic for the treatment and while Andrea was doing your treatment, Dr. Athali and Paula, the pharmacist walked into the room. We had a long conversation with them. Dr. Athali kept saying that the increase of the dose was valid, while we argued the opposite. I asked her to never again send a resident into the room to assess you, because they don't have the knowledge or the experience necessary to take such decisions. She explained that McMaster is a University Hospital, but they do have to respect our wishes and she will not send a resident in the room again. A lot of things have been said in that room that day. The Doctor even implied at some point that we might not give you the prescribed dose at home. I did make it very clear that we do not play with your medication and if we are not comfortable with thing we will let them know, as we did so far, and we will take a decision together. She also said that the hypoglycemia is not caused by the 6MP and that it was only a coincidence that we went hypoglycemic when the dose of 6MP was increased. We told her that Dr. Jassass is the research endocrinologist and she told us that the 6MP is, in fact, the cause of your hypoglycemia. She still argued her point, telling us that Dr. Jassass is actually talking about an ALL medication and she, Dr. Athali knows more about it. While I do agree with that, I told her that the 6MP might be an ALL medication, but Dr. Jassass was not telling us what it does or doesn't do for ALL, but she was talking from an endocrinology point of view. It's so very frustrating sometimes, we just feel like Don Quijote, we talk, and talk and no matter what we say it feel like it just falls on deaf ears. Everybody listens, nobody hears! Anyway, bottom line is that the dose was decreased by 20%, as per protocol. Dr. Athali said that you are part of the research, so they have to follow protocol. I told her that I will take you off the research that instant and asked her if that would make a difference. The answer was no. I asked her why did she even bring up that fact and I got no answer. Daddy said that he thinks that they might have misunderstood our requests and they might think that we ask them to decrease the dose dramatically. Well, that is not the case. We do have your best interest in mind. We only demanded (yes, demanded) the dose to be decreased to where you can tolerate it. We do know the main goal of all this is to treat leukemia, but we can not damage everything else in the process.
Dr. Jassass ordered all the tests to be done, to check the level of 6MP left in your blood (2 weeks from the last dose; if the level is still too high, it means that you do not metabolise it and it would have to be decreased again, because you are too sensitive to it), to check the growth hormone again, to check alanine level to make sure everything is fine.
At the clinic on Feb. 16, Dr. Jassass came upstairs and said that all the results are fine, (except the alanine which is a bit low; she said that hypoglycemic patients all have low alanine, but they don't know if that's a cause or an effect); she is just waiting for the growth hormone results, but the chart tells her that you grew 2 inches in the last 6 months, so she is very reassured that there is nothing wrong with that either. She should have the results by Tuesday and she'll call to let us know.
The glucose level seems better lately. We still wake up once a night for corn starch, but now in the morning is over 5, which is great! We used to take 4 measures of corn starch every night at bed time and that would last for 12 to 14 hours. Now we are taking 8-9 measures at bed time and 7-8 at 2am. We will start decreasing the 2am dose gradually. We'll go down to 6 measures for a week and then down to 4 and hopefully soon we can safely eliminate the midnight dose and you can sleep all night. You must be so tired, my love! You even went back to afternoon naps, which you hadn't since last summer. Oh, soon it will all be done and you can have a normal childhood. 5 months and 2 day from today the treatment will be over! I am thinking about many things. I am considering the dex, we need to talk to the doctors about it. I will tell you all about that after we talk to them.
And on a happier note, I am already thinking about the 'huge tea party' that you want when treatment is done. Since is going to be a fancy-dress party, we will make it 'girls only!' :) So far, I am thinking: Vienna, Alex, Lauren and Rachel, Kingsley. We just have to go look for some really fancy tea cups and later on for a really fancy dress and hat. Oh, we love you very much and Mommy is really looking forward to our tea party. :)
