When the truth comes out!

Today, I'm in a kind of a bad mood, kind of disappointed again, by the medical staff at McMaster. As I was saying before, about 7 weeks ago, I asked the Dr. to send a requisition to the dermatology department. After the March 1st L.P. I asked Andrea to check and see if a requisition has been sent to the dermatology and the answer was yes, it was sent weeks ago. Today, I asked Andrea where the dermatology department is located in the Hospital, because I would like to go and talk to them personally, because I feel this is ridiculous, it's been 7 weeks since the requisition was sent and they didn't even call to tell us when we had an appointment. She said that actually, after I asked her again on March 2nd, she looked into it, didn't find a requisition and then she sent one 2 weeks ago! I can not believe that they (she) looked us in the eye, time after time and lied to us, telling us that it was sent 7 weeks ago! And now, that she knew we would go there and ask questions, the truth will come out, she decided to finally tell us that nobody even bothered! I asked her a few times who messed up this time and she kept dancing around the answer. I asked her to answer my question and just tell us if the Doctor didn't write the requisition or if the receptionist or the nurse didn't sent it! Well, apparently, it is not the nurse's job to send it, and she didn't find any trace of requisition, so she didn't know what happened. I asked Andrea why she told me 5 weeks ago that the requisition was sent? She said that that was what the receptionist told her. So, I guess by this that the Doctor did write the requisition, since the receptionist knew about it, but she didn't sent it to dermatology! I told Daddy weeks ago that if they did not sent it, they would never tell us. I guess I was right, they only told us when backed up in a corner!

Well, the Doctor that wrote the requisition is the same Doctor who wrote a prescription wrong! You are taking Septra  half a pill 3 times a week, to prevent pneumonia. The bottle Daddy just brought from work had a label on it that said to give it to you twice a day, 3 times a week. Daddy told the pharmacist they made a mistake, but when she took out the prescription, she showed Daddy that it was not her mistake, but the Doctor's. 

Why am I still surprised about all those mistakes? Maybe I am just still hoping that one day, eventually, somebody will actually do their job properly? 

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. 

L.P.

Yesterday, March 1, 2012 we had a Lumbar Puncture and Dr. Portwine took a sample of Bone Marrow to check it and make sure there are no leukemia cells left. Because of hypo-glycemia, Mommy and Daddy stayed up until mid-night, when we woke you up for corn starch and then we all went to sleep. We woke you up at 6am, did a glucose level check, got dressed and went to the clinic. Last week we asked the nurses about the corn-starch and Zrinka said to give it to you still at 2am, as usual. We didn't take the chance, because we didn't want to get at the clinic at 7am and be told that they can't do the procedure until 10 or so, because of the 2am corn-starch. We also asked that if the glucose level was low, could we go early morning in the ward to have you accessed. She said they won't do that, so we decided that if it was low, we would've went to the ER to have you accessed and then we'd go upstairs. But the glucose level was 4.4, so we just went at the clinic. We were there first, at 7am. We measured and weighed you, you are 12.9 kilos and 93.2 cm. We gave Rena the numbers and a while later Judy came and asked if she could do another height check, because there is a difference of 2 cm since 3 weeks ago. Well, what do you know!? The measurement is correct. You did grow 2 cm in 3 weeks. That is really good, especially since Dr. Jassass said that your growth hormone is a bit low. You were the first to go in the procedure room. It is always so very scary for us when you are put to sleep. When you woke up you didn't want to eat, you just had a spoon full of soup and a couple of sips of water. Vicky came by and sat and talked to us for a bit. Then Lisa de-accessed you and then we came home. As soon as we got home you did eat 2 bowls of won-ton soup that Mommy made for you and then you had a 3 hours nap on the couch. At 7pm you started crying, telling me "Mommy, I'm so tired!", so we did our bed-time routine really quick and by 8:30 the tv was off, lights off and by 9 we were all sleeping! This morning, you woke up really well rested after a long time. Woke up at 8am and spent some time with Daddy, while Mommy went at driving lessons. 

I will stop now, because your dinner is ready, we're having chicken and potatoes in the oven, again, at your request! Your order is my command :) I'd make anything, as long as you eat! And you did ask me once, a few weeks ago "Mommy, how do you make this chicken soooo good?" :) And so would Daddy. Last night he made you hamburger helper again. :) I love you more than anything in the world! And Daddy loves you more than anything in the world.

Dealing with hypo-glycemia... and everything else.

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. :)

Breakfast

This is my 3 and a half year-old's breakfast: Sushi and Caviar! :)

There we go... again!

Oh, what a deja-vu feeling! This morning you woke me up at around 8am and I came in the kitchen, I got you a pancake, made my coffee and did your finger-poke. So far, so good, just our usual morning routine, until I read the glucometer! 1.6! I almost got a heart attack! I got you some orange juice right away and went and woke Daddy up. You had some juice, but your hand was so shaky, that you actually spilled half the juice on yourself. I called Dr. Jassass, this wonderful, dedicated endocrinologist who said that we have to bring you to ER and she'll come as soon as they have the blood results. You drank a lot of juice and then you threw up, again, which my guess is that is just the acidity of the orange juice on an empty stomach that always upsets your stomach. I told you that we have to go and then stay there until tomorrow with the nurses, and you seemed to be fine with it. But when I tried to dress you, you started crying and you wouldn't let me dress you. Eventually, you did let Daddy dress you, and we left for the ER. We were about 10 minutes away when Dr. Jassass called my cell, to say that she was in ER waiting for us. I told her we'll be there in 10 minutes. We got there, we went to a room immediately and they skipped protocol; we didn't see the Emergency Doctor, but Dr. Jassass was in there with us all the time. We did a glucose level check as soon as we got there and it was 16.7! So you went from hypoglycemia to hyperglycemia  in 2 hours! Dr. Jassass said that that's a good sign, it tells her that your hormones work just fine and your defense mechanism kicks-in to protect you. That is reassuring. She said that they don't have beds in 3B Ward, so we are right now on a waiting list. She's trying to get us checked in for two nights before we stop the 6MP of this cycle, because she is very sure this is related to 6MP. The first night, we are to do our usual routine and they would collect blood every four hours to see at which point during the night the glucose level drops and the second night, I can feed you at 2am and after that you will not get any food, but they will still collect blood to see how long you can go without food before the glucose level starts to drop. If we can't get a bed by Tuesday night, the latest, then we'll just have to wait until next cycle. Until then, I'll have to give you the corn starch at bed time and then I have to check your glucose level around mid-night or 1am and then to give you more corn starch or the alternative is an NG tube and an all-night feeding. I said, again, No to the tube up your nose. I rather wake up during the night and give you the corn starch than to see you with a tube up your precious little nose. So, I guess from now on until, who knows when, we'll just have to interrupt your sleep and take some corn starch. 
PS: The liver enzymes level went down yesterday to 80 and today Dr. Jassass checked it again, it was 67. So, that raises another question, which I didn't even think about until Madrina pointed it out: that Saturday 2 weeks ago Dr Athali said the enzymes could be so high because maybe the Methrotrexate is still filtering through your liver. That was 2 days after the treatment. But yesterday, only 1 day after treatment, the enzymes were down at 67! So, could it have been the virus causing this? Or is it something else? You have been struggling  with a cold for two weeks now, so I hope with all my heart that it was only the virus causing that high enzymes level.

Mommy and Daddy love you very much and we are very, very proud of you!

Snow day!

Thursday, January 19, 2012
6 months and treatment will be done!

Snow! Finally! You've been waiting since the beginning of the winter for some snow to make snow angels. And now it's finally here! We went at the clinic and we had the treatment done. The counts are low and it's only week 2. We still think it was way too early to have the dose of Mercaptopurine (6MP) and Methotrexate increased, but Dr. Athali said that for now she doesn't feel that she needs to decrease the dose. But being only week 2 and your neuts and monos together only 0.6, I wonder what will happen next week. The neuts and mono together have to be at least 0.5 to get your treatment, so I am very concerned that next week they will not be high enough for you to get the Methotrexate. I don't think that the increase of one pill of 6MP per cycle it's worth the skipping of a week of Methotrexate. Plus that all the CBC were low, hemoglobin at 104, neuts at 0.5, leukocytes at 1.6, platelets at 109. We'll see the CBC next week and if they keep dropping, then we'll have a talk with the Doctors and hopefully they will decrease the dose. Until this increase you were doing so well. You haven't been neutropenic since April of 2011, you haven't had a blood transfusion since around the same time. And now some... 'fellow', as Jojo called him comes in and pretends to know what he's doing and just ruins everything! Hmmm I'm not very happy right now with the way just anybody is allowed to take decisions there, without being an oncologist. When we were in ER 2 weeks ago, the enzymes level in your liver was very high, at 600, when normally is between 40-60. The following Thursday it was at 180 and this morning I asked the technician in the lab to check the enzymes level as well. She told me they were already ordered. But when Jojo came in to do the treatment I asked her about the results and she went to check. She came back and said that, believe it or not, they didn't do it!!! Sometimes, I just want to scream at everybody in there, so they wake up and to their job properly. Anyway, Jojo took blood and sent it to the lab for the tests. 

When we came home, we had lunch, a little rest and after that we bundled up and went outside. We started making snow angels on the front lawn and then we moved in the back yard and we filled it with snow angels. You were so happy! I am so happy when I see you happy! Your smile is worth more then all the gold in the world! Nothing makes me so happy, as it does your smiling face, your happiness, your laugh! I love you more then anything in this world!

Victoria and Madrina.

Hypo-glycemia

Every night before bed, we check the glucose level. Last night it was 6.2. I made you corn starch with yogurt, 4 measures, as every night (1 measure = 1/2 teaspoon) and we went to sleep, after you played your DSI for a bit, and then you said you wanted to go and sit with Daddy for a bit. You came back, climbed into bed and went to sleep with no fussing. At around 2am, you asked if we would get up. I told you it's the middle of the night and we have to go back to sleep, so you went back to sleep. You tossed and turned so much, until your head was close to my knees and your feet on the back of my head. It wasn't enough, so you started kicking me! I asked you to come up on the pillow. You came, but by 6 am, you were back :) At 6 again you asked if the sun was up and if we can get up. I said not yet, and you went back to sleep. At 7, you woke me up and asked for cold water. I brought you water and you were going back to sleep. But something was telling me, something was wrong. So, I came in the kitchen to get your breakfast, just as Daddy was leaving for work. I asked Daddy to do your finger poke and he did and after that he screamed to me to bring you orange juice.  Your glucose level was 1.9!!! How in the world did it get that low??? You took the same amount of corn starch last night, the room wasn't any warmer than usual that you'd sweat, you didn't have a fever... so, why??? Yet another mystery, yet another question unanswered. You had a lot of juice and a pancake with a lot of syrup. After that you got really tired, but I expected that, so we laid on the couch watching cartoons for about an hour an a half. We had something to eat around 11:30 and then Madrina came over to see you. You are always so very happy to see Madrina! Madrina left around 1pm and an hour later, you were asleep on the couch. About 2 hours later, after school, Belle came over to play and she woke you up when she knocked on the door. Because you were mostly asleep you said you didn't want to play with her. So, I told her we'll call her later. You tried to go back to sleep on the couch, but couldn't, so we went in the kitchen and you had a snack. After your snack you were ready to play! 

We'll go to clinic tomorrow. 6 months from tomorrow and treatment will be done! Well, officially, on July 17, but because we go to clinic on Thursdays, it will be July 19. What a happy day that will be! And after that you want a 'huge tea party". :) Oh, we are so looking forward to that! You want to go on a cruise after the treatment and you want to swim with the dolphins. We are thinking about the cruise somewhere in August. But we have to ask the Doctors if by then it will be safe, only a month after the end of the treatment. So, tomorrow when we go at the clinic, we'll ask Andrea to call a dermatologist to come and look at your hands. The skin is all irritated, all red and crusted, and very itchy. We kept showing it to the Doctors and they keep saying it's ok. Well, I don't think it is. We'll see what the dermatologist will say about it tomorrow. 

Moody Princess :)

You are a moody li'l girl :) Last week on Tuesday, Madrina came over with Vienna and one minute you were taking care of Vienna, the next minute, you were taking the toys off her. On Wednesday morning, the mystery was solved, when you asked me if Madrina will not bring Vienna next time, because when she does, Madrina doesn't play with you. I told Daddy that you wouldn't give Vienna a hug and kiss when she left and Daddy said that maybe when Vienna went home, she was upset about it and asked Madrina why you wouldn't hug and kiss her. You reply was that Vienna can't speak yet, so you are not worried about it! Mommy explained to you that just because she doesn't speak, doesn't mean that she can't feel bad about it. Well, yesterday Madrina and Padrino came over for dinner and they brought Vienna with them. The two of you played a little before dinner. At dinner time, you let Vienna sit on your high chair, because you are a big girl now, so you sat on one of the chairs at the table. After dinner, you and Vienna had soooooo much fun together! You were chasing each other from the front door to the back door, laughing the two of you. Before they left, Madrina asked for a pair of socks for Vienna and as I got up to get them, you said you'd bring them! You are so nice and generous with your friend. It's so nice to see that you are willing to give and share without me even asking you. You even shared your yogurt with corn starch with Vienna :) You still take that to keep your glucose level elevated, and Vienna loved it! She was standing there while you took it, and I can;t not give her any. So I gave her twice and then I just put in the same kind of glass yogurt only. She seemed to like it better with the corn starch in it! It is thicker. After they left, we went to bed and you fell asleep pretty quick. I guess you were tired. You woke up about two hours later crying, you had a bad dream. I picked you up and while I was standing up, rocking you, you fell asleep. I laid down, with you on top of me, and you moved a bit and fell off of me! You woke up and cried  again, and I asked you if you wanted to come and lay on me again, and you told me that you can't get up on me. I helped you back up and you went to sleep right away. You keep saying that you are ready to sleep on your own! Well, I am not! :) And I don't think you are, either, because every time you wake up even a little bit during the night, you look for me in bed, you call me and you still play with my nails until you fall asleep. While it's nice to see you become a bit more independent, it's even nicer for my 'mother-soul' to see you still need me. :)

              Today, as every day when we were talking with Madrina, you asked about Vienna. I think you really enjoyed playing with her, you two had a lot of fun last night. Now you are playing with Belle, she's the one you always play with. You are used to playing with her and even though some days you two don't really get along, usually you play nicely. That gives Mommy an opportunity to keep this blog up to date.
               It's so wonderful to hear you laugh and play! The most beautiful sound in the world, to my ears, is definitely your laugh! My heart is so happy when you are happy!