Wednesday, March 21, 2012

Hypo glycemia scare :(

On Friday, March 9, 2012 I woke you up in the morning and you cried and told me that you were tired of waking up in the middle of the night for corn starch, so I decided that if the glucose level was good at bed time, I will wake up at 3am, check it again and if it is still good, I will let you sleep through the night. We did that for the next 5 nights and everything was great, you woke up smiling, in a good mood, and I was so happy about it.
But then, on Wednesday morning my world came crushing down around me when in the morning your glucose level was 1.8! You were symptomatic, shaky hands, cold sweats. I gave you orange juice and some sugar, while waiting for the pancake. I checked the glucose level again in 10 minutes and it went down to 1.7! That's when I panicked, I called Daddy to tell him to meet us at McMaster and I called 911 and after that I did another check. It went up to 3.4. Oh, the relief! The first paramedic arrived in 10-15 very, very long minutes. When Doug, the paramedic walked in, I was so happy to see him I wanted to cry. I don't think I've ever been so happy to see anybody lately as I was to see this paramedic. I told him that the glucose level is going up and he asked me if I wanted him to give you a shot of glucose. I told him I don't think it's necessary, but to go ahead, if he thinks one is still needed for your safety. He didn't give you one and asked me if I still want to bring you to ER. I said I don't think so and he offered to stay with us for a while to make sure you are ok. Later, 2 other paramedics came and Doug was speaking with them in the living room. When he came in the kitchen, you asked him what are the paramedics' names. He introduced them, Josh and Bill.
I called Daddy, who was on his way and he came home to make sure his Princess is fine. And he remained home for the rest of the day, didn't go back to work.
There were very few times in my life when I felt truly scared and when I think about it, I realize every one of this times is related to your safety. There is nothing more scary in this world than when it comes to a parent's child's life and safety. 
So, since then (it's been a week), I do wake you up every night for the corn starch, regardless of how high your glucose level is. I rather you are tired than not safe. And, besides, there's only four months left of the treatment and then about 2 more until the glucose level stabilizes and we can sleep through the night. 
We love you very much, more than anything in the world and your safety comes first. No matter how tired we all are, we are not going to take another chance. 


  1. Hi. I found your site while Googling for information on 6MP and hypoglycemia. My son is in treatment for ALL and also developed hypoglycemia during Maintenance. Our oncologist is now having us give the 6MP in the morning - after this latest scare, perhaps you could bring that up with your daughter's? We tried bedtime snacks with cornstarch and his blood sugar level was still crashing.

    1. Hi, Theresa. Thank you so very much for your message. First I would like to tell you how sorry I am to hear about your son. I know how very hard it is.
      I did ask about the morning administration of 6MP in the morning and they said that the 6MP is apparently better assimilated during the night, something to do with hormones. If the glucose level would still crush even with administration of corn starch, the Doctors' other solution would be an NG tube through the nose into the stomach and an all night feeding of, probably pediasure. Please, tell me how it works on your son having the 6MP in the morning? Did it make a difference in his glucose level? Is he still taking corn starch?
      Where are you living? And how far in the treatment is your son?
      I don't know if my blog helped you at all, I hope it does, even though I am writing for Victoria. I want to have everything here if she would like to read it when she grows up. Please, keep in touch and let me know about your son. Hope everything is going smoothly for your family.

    2. Hi, Nadia. We live in the US (Wisconsin). He is 9 months into Maintenance, and was diagnosed 16 months ago. We no longer do a bedtime snack (unless he wants something) and no more cornstarch. First we tried moving the 6MP to the mid-afternoon, but he still crashed. We found he was crashing 12 or so hours after he got the 6MP. Then we tried giving it in the morning, and he's been fine since. Ideally we give it first thing, then wait an hour for breakfast. If he is very hungry or wakes late, we give the 6MP an hour after breakfast, then wait at least 2 hours until a snack or lunch. Our oncologists looked at the literature and felt the morning dosing was OK. We do worry a bit, because most everyone says giving the 6MP at bedtime is best. I can't imagine having a feeding tube for my son for the next 2 years! My husband and I did wonder if that (tube feeding) would be something they would suggest.

      And thank you for your note about his leg pain. We do worry that it could be his bones (osteonecrosis/AVN from the steroids). So far the medication they prescribed for neuropathy (nerve damage and pain) is helping, so it seems that is the issue.


  2. Hi, Theresa. Thank you, again for writing me.
    Please, tell me how long it took after switching to mornings before his glucose level stabilized and how long ago you switched to morning?

    About the feeding tube: we always said No. I won't even consider it, as long as we can deal with everything, no matter how hard. I asked her many times if she would rather have a tube and then she won't have to wake up at 3am and she always says no, it's ok, she'll wake up for the corn starch.

    I read your blog after I wrote the message, so I did find answers to most of the questions :) I also saw that your treatment protocol is very different from the protocol used here. Here the cycles last 21 days. The whole treatment is 24 months from remission. (36 months for boys). I tried to see if you replied to my message on your blog, but I can't figure out how :(
    All the best to Nicholas! Our kids are so very brave! All I need is to look at Victoria when I think I can't take it anymore and I feel ashamed. I think we take it harder than they do (Or so I like to believe).

  3. I didn't reply on my blog, just here. The blood glucose stabilization was immediate - that very day! That was almost 2 months ago. One of his liver enzymes was very high (the ALT, I think) and I wonder if that contributed to the problem.

    Yes, it is amazing how well these little kids cope with all that is thrown at them! They are inspirational!!!

    All the best, I will continue to follow Victoria's Victory!

  4. Thank you, Theresa.
    The way our protocol is, Victoria takes the 6MP for 14 days and then no meds for 7 and then we start again (21 days cycle). Even in the 'week off', we are still struggling with hypo-glycemia, the Endo Dr. says it takes about 2-3 months for the glucose level to stabilize.
    I'm not sure if there is a connection between the elevated ALT and hypo-glycemia, because, yes, we've been there, too. Level was around 600!!! at some point and then it went down, during the following 2 weeks.

    All the best to you and thank you for your messages, they helped a lot! XO

    1. I meant 2-3 months after the end of the treatment for the glucose level to stabilize. :(