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!

Kindergarten.

                  Word has it :) that come September you'll start Kindergarten. The big question here is: "How is Mommy going to deal with it?" I know, it sound silly, childish, insane, but I can't see myself being away from you all those hours a day. I am addicted to you, I don't think I could bear the silence of this house with you in JK. The specialists say that this is how we prepare you for the world, how we, as parents, teach our children independence, how we allow you to deal with things without our interference and without our help. All things that I agree with, but, unfortunately, mothers don't come with an 'off' button and the maternal instinct to protect our children follows us through life, from the instant that the child is born. I haven't found yet any psychological 'tips' that would help me go through your first day at school. What am I going to do? How will I deal with it? Am I suppose to wait in the hall-way to still be physically in your proximity or do I have to do it band-aid way, and just come home? I think that this is the problem, I don't trust that a stranger will be able to understand and protect you, the way I would. I am terrified at the thought that I could drop you off at school and you'll be crying until is time to come home. I am terrified at the thought that you might, even for a minute, feel abandoned. 

                  They introduced now the 'full-day' of kindergarten. There is no way that I would take you to a full-day JK! We will have to find a JK that is half-day. Finding a JK is another problem. Since the day you were born, I always said I want you going to a Catholic Kindergarten. The 'pro' is because they have a better discipline. The 'con' would be the concept of God as the Creator of everything. I want you to know about God, but in the same way I want you to know about science. I don't want you to be indoctrinated in a Catholic School that God created the Universe and that's that! I want you to know both sides, religion and science and once you have all the pieces of the puzzle, I want you to make an educated decision, I want you to choose what's right for your life, based on what you know, not on what the teachers in a Catholic School told you you HAVE to believe in. I think that the more I think about it, the more and more I am against Catholic School, but I am not really happy about public School, either. The problem is that the Schools already register for September 2012, so we need to register you already. But, where? I think we will just go visit some schools and see what their policy is about me staying in the class until you get comfortable there, we'll have to see which one you like, we'll have to see which one is stricter against bullying. 

Fun and scary

First week of January 2012, Daddy took a week off and we went to Niagara. We stayed at the Sheraton and we went at the Fallsview Waterpark. For the first time, I heard you shriek with pleasure and excitement when we got in the pool. You just love the water and the slides! I think we spent a whole hour on the small slide. Then we moved to a bigger slide, and every time you went on it, you said: "Once more, Mommy.' :) 

I told you to go on it as many times as you want, after all, we went there for you to have fun, so do anything you'd like.

At dinner-time, we went on the 13th floor of the Sheraton at the Fallsview Restaurant and we had a very nice dinner and a spectacular view of the falls.

Next day we woke up and you wanted to go at the pool as soon as you had your breakfast. You did wait until about 10, until the pool opened! We spent about 2 hours at the pool, but the one wave pool they had there, wasn't opened yet, so we spent the 2 hours on the slides. Oh, you had so much fun!

The rest of the week we didn't do much, is very cold outside. Just went to clinic on Thursday, and the counts were really low. Neuts were 0.2. It's been a long time since you've been neutropenic, since April 2011, actually. On week one, some sort of a Doctor came in the room to check you and he said that since the counts are good, he will increase the dose of your medication. I asked him and then I told him that I think is too early, because the dose had just been increased the previous cycle. But he increased it anyway. Now you're neutropenic! I'll have to have another talk to everyone at the clinic and I will make it really clear that if they are not qualified doctors, I don't want them in the room to talk to us and much less to make decisions.

On Friday night you did feel a bit warm, but didn't have a fever. At 6am Saturday morning you still didn't have a fever, but at 8am when I checked, your temperature went up to 38.4. I called the Dr. on -call, it was Dr. Portwine and she said that because you were neutropenic we have to go at the Emergency Room to have you checked up. By the time we left the house you had no fever or when we got there. We went in triage and gave the 2 nurses all the information they needed, also saying that you are hypoglycemic. We went to a room very soon and a Resident Doctor came in to talk to us. After we told him what was happening, he asked us what should we do while we wait to see if we go upstairs to the Ward. I told him to take some blood from the port and some from a peripheral vein and send it to the lab and then to phone the results in the ward to Dr. Athaly and she will decide if we were going upstairs or coming home. Leslie, the vein specialist came and accessed your port and got blood from the port, but couldn't get any blood from the peripheral vein. But you were so very good, never moved, never even seemed to be bothered that she was poking you. She then set the IV pump at 20ml/hour and said to Margo (the Child Life Specialists in the ER) that she doesn't remember what Rose, the nurse told her to set it at, but Rose will come in and reset it. 

One nurse came in later and said that all the results were fine, and we can go home. A few minutes later, another nurse came in and said that one of the results were not quite good, because it shows traces of heparin and we should do the test again. They took more blood, and sent the blood to the lab. While waiting you fell asleep laying on me on the bed. The nurse, Matthew came and said that they got the results back and everything is fine, so we can come home. He also asked if he has to put heparin in the port when he will de-access the port.  Ummm... YES! Anyway, he called Leslie in with him and took your arm out of the sweater, and you didn't wake up. I told Daddy right away that you are not OK. Then the nurse took the big sticker off and you still were sleeping. Daddy took your glucose-level and yes, it was down. 2.6. Daddy found a nurse right away and asked for orange juice. You drank 2 small containers and when I sat up with you, you threw up. Probably too much juice too fast. Daddy demanded that the PACE team was called in and the nurse kept saying that she is not allowed to call them and she went and called the ER Doctor. By the time the Doctor came in the room, maybe a couple of minutes later, you began to look better, were a lot more responsive. This was the first time I saw Daddy freak out on anybody! He is the nice one in the family, but I think even Daddy got to the point where he is fed up with them and the fact that we always have to watch them or they will make mistakes!
On Monday morning I e-mailed Dona, the nurse's supervisor in ER and I asked if she would be able to come in 3F Clinic on Thu, because Daddy wanted to talk to her. 
She came upstairs on Thu and we had a long talk to her. We told her all of our concerns, I told her that I have yet to find a Doctor in the ER to impress me. But they are making improvements and slowly hopefully thing are going to get a lot better. We all agreed that the Saturday experience could have had unfortunate consequences and if it didn't it was Daddy's merit for thinking about the glucose level, and not the merit of her nurses. 
Thursday afternoon, around 5 you felt really warm and when I checked your temperature it was 38.6C. I called the Dr. on-call, they paged him twice in 10 minutes and there was no answer. I checked your temperature again, it was 39C already, within 10 minutes. I guess I caught it when it was peeking. I called paging again, they again paged the Dr. and after 10 minutes, the lady at the paging told me that she called his house, cell phone and pager and there is no answer. I even called 3B Ward, but of course there was no Doctor there anymore. I called Daddy and we decided to give you Tylenol ad if the fever doesn't go down, he'd come home from work and we'll go to the ER again. Within half an hour the fever started going down, about 0.1C every 5 minutes. It kept going down until about 11 pm when it was 37.7C again, so Mommy woke you up for some Tylenol and you wouldn't take it from me. Daddy gave it to you and then you were really upset, Daddy walked around the house with you for a few minutes, until you calmed down and then you went to sleep with Mommy. Now you are fine, you're playing with Belle, as I'm writing this. Madrina called today to check, because I texted her last night to tell her about your fever and she was concerned. 
Let's hope the last 6 months of the treatment are going to be smooth, without any of this big scares. We love you very much and we are very, very proud of you. XOXO

Beautiful princess hair.

First time with pony tails :) You looked so happy when you saw yourself in the mirror! You are beautiful!