Saturday, December 31, 2011

Li'l Mommy

I am so proud of you! Madrina and Vienna came over today and you were so good with Vienna, walking behind her all the time, ask her what she needed :) Madrina brought 2 more presents for you, that her parents sent you. 
I still think that Daddy and I made the best decision when we chose your God-parents. They are the best God-parents in the world! They love you and they show it every time they get a chance. They really care about you, with all their hearts. 

Monday, December 26, 2011

Merry Christmas.

Merry Christmas!
What a nice Christmas we had. I was a bit concerned, because on Thu evening you had a fever; you got a cold again! Got a fever Thu night, and another one Friday night. I am happy it went away, because we wouldn't want to spend Christmas in the hospital. But, this was the perfect time to get a cold, the neuts on Thursday were 7.4!
On Christmas Eve, we put a lot of cookies on a plate for Santa :) and you said that the cookies have to stay on the fire place, because that's what Max & Ruby do. You and Daddy decided that in the morning you go and wake Daddy up to see if Santa left presents. I woke up around 7 am and 15 minutes later you woke up and asked me if Daddy's coffee is ready and went to wake him up. There were so many presents from Santa! You must have been really good this year! You got a Kinnect and Mommy and Daddy had a blast! You sat on the couch cheering us on and laughing of us :) Man! Am I sore! The most successful toys were the stroller, the camera and the truck. And today Mommy bought you a video camera :) Now maybe you'll stop playing with my cameras. 
We love you very much and we want the best of everything for you.

Saturday, December 24, 2011

Wednesday, December 14, 2011

Silent night.

Dec. 14, 2011
Silent night? Hmmm. Hopefully by the time you're old enough to read this, you'll know that night is for sleeping, not for watching cartoons and America's Funniest Home Videos! You woke up last night at 11, after 3 hours of sleep and stayed up 'till 1am! I fell asleep at midnight, sometime. And then you woke up at 6:30am! 
Tired and all, we still had a good day, Madrina came  over for my birthday, brought a cake and we had a nice lunch, just the 3 of us, followed by cake! 
Around 3pm, we went for a rest and you laid on your small couch beside Mommy's couch and fell asleep. I think now we'll be up until 10pm or so... probably. Oh, it doesn't matter, really, as long as you are healthy and happy, that's all that matters. 
We made Christmas cards today, we'll bring them at the clinic tomorrow. You wrote them yourself! I'm so proud of you!

Dec. 24, 2011
Yesterday you had your first shower! After only baths, you had a shower and kept telling me that now you're a big girl! :) Yes, you are such a big girl.
We went to clinic on Thu and Bob the builder was there :) and being before Christmas, you got presents: a Fifi Doll from Bob and a Mickey Mouse in a tartan dress. The nurses were very pleased to get the cards you wrote yourself. The counts were really good, neuts 7.4! But that evening you got a fever. I called Dr. Barr who advised me to give you Tylenol and 2 hours later Advil, then 2 hours later Tylenol and so on, all night! Yeah, right! I did give you 2 chewing tablets of Tylenol and the fever went down and you were fever free until last  night, when before bed I gave you another 2 tablets. This morning you wanted shrimp for break-fest! :) We are sooo looking forward to Santa! You said to me yesterday that I am on Santa's naughty list, but you'll share your toys with me. Last night you fell asleep and about an hour later you woke up, looked at me and started laughing! I asked you what's so funny, you said nothing, but kept laughing. I think you were still asleep!  You are in the living room, want me to come and play, so I will write more tomorrow or Monday.
We love you very, very much!

Tuesday, December 13, 2011

Memoirs for my daughter, Part 10

Last time I wrote, I said, I'll tell you what happened with the hips pain that you were complaining about. We told the Doctors about it, but we said that we were not sure if they really hurt you, or you were just copying what Madrina was saying about her hips hurting. But, any way, the Dr. ordered an MRI and the results were not happy. Apparently you had some lesions in the sacroiliac bone, even though none on the hip bone. They told us to give you 500 mg. of Calcium daily. So you are taking the Tums. I was so concerned that you might not like them, but what a surprise I had. You are asking for more! Oh, is hard to remember everything that happened. It's been months since it all happened. I am glad I wrote down the first year of treatment, so then when you grow up if you decide to know what happened, then here it is, you can read it all. I will try and write a bit more often.
The next few months will be very succint, so here it goes: 9 weeks after the first MRI, we did a second one, during the L.P. The results coming back were somewhat pleasing, somewhat concerning; because you complained about your knees, we asked the radiologist to do a knee MRI, as well as the hips. After arguing with him for 20 minutes, he finally agreed. All the lesions that were in the sacroiliac bone had disappeared, but some new ones appeared and lesions in the tibia were found as well, explaining the pain in your knee. After this, the Dr. decided to stop administering the Dexamethasone. It is good for now, because we don't have to worry about bone pain, about mood changes, about all the bad effects of Dex. But we can't hekp it but being concerned about what this will mean in the long run. They don't really know what the Dex does or how it helps, but they have research to prove that it does help. There are a lot of things they don't know about Leukemia, but they do know the most important thing about it: they know how to treat it. This doesn't mean that we still don't have questions... perhaps we'll never have the answer to them. 
We celebrated your 3rd birthday and there were 6 girls there: you, Lauren, Rachel, Vienna, Alex and Kingsley. That was a good day. You had fun playing with all the girls, especially you loved Kingsley. 
During the summer, we went to Marineland in Niagara, but here you were still on Dex and even though you had fun on the rides, you were not very happy that day. Not grumpy, either, just... I don't know. After this, we went to Wonderland in Toronto. That you loved! You had a blast on the rides. Daddy took you on all the rides!  We also went to African Lion Safari. We had a great day. You enjoyed seeing the animals and, of course, the pony ride, Mommy went on the  elephant ride. Oh, those elephants. They have the saddest eyes in the world! I don't think I've ever seen a creature with such sad eyes.  
We went to Lauren's 3rd birthday in Kitchener, which was a very nice day, lots of kids, you helped with the pinnata :) 
We went to Vienna's first birthday and you were kind of wild, but not bad wild, just it looked as if you were really comfortable being there. Kingsley was there, too, but you refused to play with her! You kept saying you didn't want to play with her! 
In August we went to stay overnight in Niagara and we spent the day at the water park. Everything was fine, until the night came and you started crying, saying you didn't like the Hotel and you wanted to come home. So we packed everything and we came home.
On August 19 we went at Michael's to make the signs for the Golf Tournament that Gators organize every year. This year was for a little girl named Piper.  (Par for Piper) You wouldn't get your hands painted, to make hands prints, though, you asked for a brush! :)
On Aug. 21, the day of the tournament, we went at the Vicar's Vice with Daddy for brunch and after that Daddy brought us home and he was going to play golf. But when we got home, there were messages from Allison and Aunt Shirley that Granny fell. She was in the Hospital with a shattered shoulder! Daddy went to the Hospital and Granny sent him to play Golf. The following week, Granny had surgery and had her shoulder replaced. She's doing really well now, shoulder-wise, after she spend weeks in the Hospital and a few more weeks in a rehabilitation center. 
What a scare! I felt so very sad during all this weeks, I couldn't stand losing your Granny. She is my very good friend, I can talk to her about anything in this world and I know she won't judge me, I know she loves me, as I love her, I know she'll understand me. I already lost a mommy, I am not ready to lose another one. She is nothing like a mother-in-law, she is just a mother and a friend. Thank God she recovered! 
After 10 weeks, she went home. As I write this, today, Dec. 13, Granny is in the Hospital again, she can't breath very well and called this morning to say that she'll go at the Hospital. Daddy just called to say that they are waiting for the blood work results, to see if she'll stay or she gets to go home. 
In November, Daddy took two days off and we went to Great Wolf Lodge in Niagara. We would've liked to go down south (Mexico or Cuba), but the nurse, Andrea said that it would be better to just wait until the end of the treatment, just to be safe, so we will wait. You loved the Lodge as much as you hated the other Hotel! :) And because you decided to not have anymore naps in the afternoon, you spent the first afternoon and the whole next day in the pool! You just loved it! We went on one of the big slides and I was worried that you'd be scared, but, oh, my! you are so very brave! You enjoyed every second of it! The day we left, you told me you really liked the Hotel and asked of we could stay longer... unfortunately, Daddy had to go to work. But we'll go again, soon. I think this is pretty much what happened, the treatment is going smoothly, you respond to it very well, Daddy and Mommy are very happy about it. 
We are waiting for Christmas, I'm sure Santa will bring you loads of presents for being so very good all year! 
Mommy and Daddy love you very much and we are very proud of you!

Tuesday, November 29, 2011

Memoirs for my daughter, part 9

It's been a while! It's March 11 when I write this, so it's, again, been 2 months since the last time I wrote. It's hard. though, with so much happening. But let's see just a quick recap: Your auntie, Diana, was here for a month! We went to get her at the airport and we were very, very surprised when she asked you to go to her and you just put your arms towards her! That is so unlike you! Especially considering the fact that until then you wouldn't even go to Daddy in the airport! And you even showed her your necklace. We said it was the calling of the blood. Having Diana here really helped Mommy morally, but as far as you were concerned, not so much help. You didn't want anything to do with her while on steroids, but then again, you want nothing to do with even Daddy while on steroids. But any other day, even though she spoke Romanian and you English, you two got along really nicely. 
On February 10, 2011 you had an L.P. and an Echo. Diana, Daddy and Mommy went for a coffee and on the stairs we met the cardiologist, and I stopped him and told him you're having an Echo and he said he'll look at it right away. Even though I felt kind of bad, because he didn't know who I was on the stairs, I was glad I stopped him, because he went to check the results right away and they discovered that there was a blood clot attached on the outside of your line, on the end that is in your heart. Next day we went to McMaster in the morning and waited for the nurse to teach Mommy how to do your anticoagulant subcutaneous  needles. Apparently, after three months of 2 needles per day, the clot should 'crystalise'. 

We went to clinic and Dr. Scheinemann called us in the room to tell me that it is time for a feeding tube (NG Tube), because you were not gaining weight at a rate that was satisfying to the Doctors. So, we got on the waiting list for a bed in the 3B ward for a tube insertion, so we can administer the Pediasure. 
It took me 3 days to realize that I could give you the Pediasure in a syringe, just as we do with the corn starch (to stabilize the glucose level). So, I called them and told them that I will not allow the tube insertion and asked them to remove your name of the waiting list for a bed.

After 3 months of anticoagulants, we had a very nice surprise at the ultrasound: the blood clot not only crystallized, it actually disappeared! I have to tell you what a good little girl you are; while Diana was still here, you were sitting on my knee and Diana was doing the needles. After Diana went back home, it was either me holding you and Daddy doing your needles, or the other way around, but then there were days when Daddy was at work at the time for your needle, so you were either laying on the bed or sitting on my lap and I was doing your needles. In three months, we only missed one needle. I was so scared the first time I had to do your needle on my own! Even though I knew you don't normally move while treatment is being done, I was still afraid you'll fuss while the needle was in your arm or leg and I would hurt you. But, you are definitely the bravest little girl ever. I remember once I said "I'm sorry!" when I had to poke your finger for a glucose-level check and you said "It's OK, Mommy, I know you have to do it." And you're only 3 year old and already so understanding. This is not easy on any of us, dealing with all this, this is not something a 3 year old should be understanding about. But I guess to you this is normal. This is what you you know. Soon the treatment will be over and you can have a normal childhood. We love you very much!
This was when you started complaining about your hips hurting. But that story tomorrow. 
We love you.

Saturday, November 12, 2011

Memoirs for my daughter, part 8

Today is November 12, 2011 and I am trying to catch up with my diary. This is the entry I made on Oct. 29, 2010:
Yesterday we went to the clinic and the glucose level was 3.6. The endocrinologist Dr. (Resident, Dr. Jassass) came to talk to us and told us to go to the Pharmacy and get a glucometer and check your glucose level at bedtime, midnight and morning, before breakfast. We did that last night and the levels were 14.1 (high, but you just had Orange juice, and dinner), 8.1 at midnight and 5.5 at 5am. After the clinic we went for a bone density test and I can say that you are definitely the best little girl in the world! You just laid on the bed as the technician asked you to and never even moved, until we were done. And for being such a good girl, you got lolly-pops and stickers. You wore your pirate Princess dress that we got for Halloween and everyone admired you, as always. :) We love you very much and we want you to know that you make us very proud.

I haven't wrote in two months!!! And a lot has happened. Even though we are still struggling with hypo-glycemia, we did spend a night in ER with hyper-glycemia. On Dec. 9, 2010 you had an L.P. and at night when we checked your glucose, it was 27!!! We think it was because of too much glucose they administered IV during your sedation. Daddy called the Dr. and they told us to take you to Emergency. We tried to dress you, but you were not very alert, we couldn't really dress you. Daddy got really scared, he was actually crying and told me to call 911. We got to the ER and without them doing anything at all, it went down on its own, within an hour, to 7.6! But we spend the night there, anyway, just to be safe.
We had a good Christmas, Santa brought you a lot of presents. The night before Christmas you did throw up, we woke up in the middle of the night because you threw up! You must've felt pretty sick, because we walked through the living room and even though you saw all the presents, you never said anything about them. We went and woke up Daddy and he changed the bad for us and put everything in the washing machine.  But in the morning you were soooo excited when you saw that the plate where you left Santa's cookies was empty! And after that you got excited about the presents.  Tonight is New Year's Eve and we started the dexamethasone yesterday, but you are fine. Thank God you are fine! It's so hard for us to see you in pain, to see you suffer and not to be able to take all that pain upon us so you don't have to suffer any of this.

We love you very much!

Tuesday, September 13, 2011

Memoirs for my daughter, part 7

Today is Sept. 19 and I didn't write in a month! Only because there's not much to say. We've been home for a month now. And it's kind of scary, because your absolute neuts (immune system) are 0.1! And you temperature fluctuates between 37C-37.5C, which is a bit alarming to us, but is not high enough to call the Dr.. We have to call them when/if it reaches 38.3. I hope it won't. We're suppose to start the CNS treatment on Sept. 23, which means 2 LP's (Lumbar Punctures) a week for two weeks, if you don't get neutropenic (neuts < 0.5) and you stay fever-free.

On Sept. 23 we went to the clinic to start the CNS therapy. This is to avoid the apparition on leukemic cells in the spinal fluid and in the fluid surrounding your brain. There's never been any, but they do this therapy as a preventive measure. We didn't start the treatment, because the counts were too low, but we'll go again on Sept. 28 for a CT Scan and if the counts are high enough, we will start the CNS, as well.

Every week when we go to clinic, we have to go and get a finger poke to check your CBC's. You are so very good! You sit on my lap, give the nurse the thumb and sit nice and quite for the nurse to draw some blood. You fuss more about the band-aid! For some reason you just don't like band-aids anymore. You used to cry when I took them off, now you don't want them on! Also, every week the nurse has to change the dressing over your picc-line. You do cry a lot, but you never move your arm. The nurses are amazed at how good you are. They are also amazed at how beautiful you are. It hasn't been too many people to ever lay eyes on you and not say how beautiful you are.

On Sept. 28, we went to the clinic for CBC and the CT Scan, which was scheduled for 1pm. Even though you were NPO (no food or drink after midnight), you were very understanding when I explained I can't give you anything until the nurse says it's OK. At 11am, there was a Code Black in the Hospital, and they said on the news that there was a threat that a medical student has planted 5 bombs! So, for 2 hours nobody entered or exited the Hospital. Everyone stayed in the areas where they were when the Code Black started.

We went tho the CT Scan area just before 1am (the Code ended just on time) and the Doctors were in a meeting deciding if they should do the scan today or not. But then the Police cleared all areas and you had your CT Scan done. You still didn't have the LP done, the counts were still too low, neuts at 0.3. You woke up, ate really well and we came home. We'll try again on Thursday. 

Daddy will take you at Toys'r'Us tomorrow to buy you a doll house.

My! You are so amazing! Lately, you caress my arm or Daddy's arm and YOU ask US if we are OK. We always tell you that if you are OK, we are OK, too.

Oct. 1, 2010
We went to the clinic yesterday and the counts were still low, so we'll try again on Thursday, Oct. 8. Yesterday we got leg needle (Asperegenase) number 8 out of 30! Results from CT were back and everything is clear. Dr. Lieberman talked to Dr. Bailey to set a date to put your port in. We are so looking forward to have the port(-a-catheter) put in so you can play whichever way you want and so you can have a bath without having to keep your arm out of water! It just breaks my heart every time we take your shirt off, which lately you only accept long-sleeve, and you turn your head away and say "No look! Boo-boo! Mommy/ Daddy/ Lola/ Ana look!" I can understand how you'll be sick and tired of it, it has been in your little arm for 3 months already! But soon we'll be rid of it! We love you very much, you wonderful little girl!

Hello, my little sweetheart!

Today is Oct. 23 and I didn't write in a long time, but this time because a lot has been happening. We started the CNS treatment. The first 3 went OK, as we expected; you had it done, woke up, ate, got out of bed and started walking, like nothing happened. The 4th LP was supposed to be on Oct. 19, but on Monday, the 18th, Dr. Bailey's office called and said that they have an OR time for Wed., Oct. 20, so they co-ordinated everything, so you had the 4th LP and the Port inserted in one sedation.

We went to clinic on Tuesday for the pre-op assessment and CBC and I did happened to mention to the nurse that your blood looked quite thin. When the results came, sure enough, platelets were down to 23!!! (Normal limits are between 150-400.) Andrea, our clinical nurse said that you needed a platelets transfusion and we had to be there early next morning, before surgery. We said we'll be there at 8am.
You slept all night, and woke up at 7am. We went to clinic and Daddy and I knew something was not right. We asked Andrea to send the Dr. over to see you, as you were very sleepy, which is so unusual for you. Dr. Lieberman ordered another blood work and we went to the OR for the 12 o'clock appointment for the Port. You were still sleeping! Dr. Portwine came downstairs to do the LP and said that before we can go in, we have to ask for the blood test results, before they decide if they will do the surgery or postpone it. Dr. Bailey called the lab and finally got the results after 20 minutes! You were hypo-glycemic!!! The glucose level was only 1.6 (Normal levels are between 4-11 for your age group). Surprisingly, you were still conscious! They gave you a bolus of glucose water and instantly you were better. You finally got in the OR at 2pm. They only allow one parent in the OR, so Daddy waited outside and I came in with you and held you until you fell asleep. This was the hardest one yet to watch them sedate you. This time they wanted me to lay you down on the table, and while you were crying, they put all the probes on you and the Oxygen mask on your face; you were looking at me, your beautiful eyes begging and accusing me in the same time, for allowing them do this to you. You looked scared and they wouldn't let me hold you... They did let me stay until you fell asleep. While you were crying I was bend down over you, talking to you and I saw 2 eyelashes turned down into your eyes. I went outside to Daddy and we went for a coffee, but all I wanted to do was curl down and cry and die, and every time I feel like this I realise how selfish my wish is. I can't do that! I have to be there and be strong for you, my love, to hold your hand and get you through this.
The surgery lasted about an hour and then they called me into the recovery room and you were already awake. A nurse had picked you up and she was rocking you, because you were crying. I picked you in my arms and rocked you and comforted you, until you stop crying and fell asleep again. Half an hour later they took us back to same-day surgery section. You woke up, had a drink and a bit of Jell-o and got sick and threw up, which was scary, because you had never thrown up before after the anesthetic. You fell asleep again, after the nurse gave you some Gravol and you told me "Tummy hurt." and asked for Tylenol.
At 8pm they transferred us upstairs to sedation clinic to spend the night, just to make sure you were fine and because your hemoglobin was low, the Dr. wanted you to have a blood transfusion before we came home. You ate 4 crackers and then you went back to sleep. You woke up at 3am and asked for a cereal bar to eat, ate it and went back to sleep until 7am. When we woke up, you stayed with Michelle, our friend, the nurse from 3B and Mommy went to get a coffee.
We waited for Dr. Bailey to come and order the blood, and we finally got the cross-match done and the blood by 2pm! Your hemoglobin was down to 72. (Normal limits are 115-150) The transfusion took 3 hours, so we finally got home at 6pm! This past two days since we've been home, you have been the happiest little girl. It makes Mommy and Daddy so very happy to see you like this. We'll have to inquire more about the cause of hypo-glycemia, when we go to clinic on Thursday. We think it was a combination of the CNS, NPO and Septra, which you take 3 times a week to prevent pneumonia.

Monday, September 12, 2011

Memoirs for my daughter, part 6

July 28, 2010
Last night was better and you actually ate breakfast this morning. And after that you asked me called Diana to give you a hug to take your medicine :) So, I called her. Diana, Madrina, Padrino and Granny have been such a great support to us, they showed how much they care and I hope that no matter what, you never turn away from them. They all love you very much!

July 29, 2010
Last night was a terror! Sleep-wise. We are, all three, so very tired! But hopefully soon everything will be back to normal. We don't even know why you are so upset! We don't know if your arm hurts, where the picc line sticks out or if you have bad dreams about everything that's happening. We try hard to comfort you and we do anything you ask us to do and it still doesn't work! It's OK, though, with love and patience we will get through this.

August 3, 2010
I haven't wrote in a few days, simply because I didn't know what to say or how to say it!  It's been 3 bad days and 3 worse nights, when you've been quite upset and you wouldn't even tell us what was wrong.
I was getting pretty upset at night, it's... frustrating for me when you cry and I don't seem to be able to understand what is wrong and how to make it better. And I am so very tired!
So last night, Daddy had a long talk with me, explained to me how you must be feeling, what you might be going through and how me getting upset doesn't help you calm down. He was right; me staying calm really helped last night and we had the best sleep we had in weeks. Daddy is so very comforting, calm, wonderful and smart! I guess I just needed Daddy to say in words what I knew in my heart, but was probably too tired to realise it. Him talking to Mommy helped both, you and I. I love you and I love Daddy very much! And Daddy loves us just as much.
Because we had a good night, when you only woke up crying twice, we went to the park this morning. Hopefully tonight will be even better and we'll go to the park again in the morning.
You woke up at 2am and wanted Daddy. I asked if you wanted in Daddy's bed, but you actually wanted to stay in my arms, while I stood in the middle of Daddy's bedroom and you watched him sleep! After 15 minutes, I woke up Daddy and he picked you in his arms and asked if you wanted to go to your bed and lay on him. You agreed with this, so the three of us slept on your bed until 6am when you and Mommy moved onto the  couch and Daddy to his bed and we slept on the couch for another hour. Yes, these days we consider this a 'good night'. :)

Aug. 4
Last night after your dinner, Madrina and Padrino took you for a walk, while Daddy bbq-ed. You went at Zellers and Madrina and Padrino bought Barney for you. Then you came back and had a lot of bacon off the bbq. Your appetite is coming back, your mood is improving, we have our happy, hungry baby back again! You even slept better last night, woke up once around 1am and fell asleep on Daddy again. We woke up at 7am, had breakfast and went to the park. Daddy and I love you very much and we'll do whatever it takes to make you happy.

Aug. 5
Today we went at the clinic for a blood count and you neutrofils are 2.4, which is good (anywhere between 1.5-8.5 is good), hemoglobin and platelets also going up! All in all you are doing good, you are happy, you are eating, you are drinking. We love you very much and we are very proud of you!

Today is Aug. 15 and I will try to up-date! On Aug. 7 you started a fever again, so I called Dr. Portwine 3 times that day. At 6am on Aug. 8 I called her again and she said to bring you in to the Hospital. They put you on all sorts of antibiotics, but for the next 5 days, you still spiked fever after fever, every 4-6 hours. On Aug. 12 they gave you a CT Scan to try and find out what is causing the fevers. The Dr. came back with the results after a few hours. There is an infection in your lungs, but they don't know what is causing it.
Last time you had a fever was on Aug. 13 at 4am and none since, but Dr.  Bailey (she's the surgeon) still wants to perform a bronchoscopy to check if the infection is viral, bacterial or fungal. As I write this quick update, you are sleeping and we are still waiting for the Dr. to take you to the O.R. for the procedure.
We had again two really rough nights. Two nights ago, you fell asleep at 1:30am and slept on me until 3:15am when you woke up and didn't go back to sleep in the bed, but fell asleep in my arms, as I sat on a chair in the hallway, at 4am. At 5am we came and sat down on a chair in your room and we both slept there until 6am when we moved to bed and slept until 9am. I woke up at 9am, but you slept until after 10am. Last night wasn't as bad, but wasn't great either.  You woke up at 2am, then at 4am, at 5am, 6am and then at 7am and didn't go back to sleep.
They came to take you to the O.R. at 4am on Monday morning and it was all done in about an hour. Daddy waited on a chair in your room all night with us and after the procedure, he went home to get some sleep.
At 7am, Dr. Bailey came and woke me up and told me that it looks like it was nothing but mucus, but we do have to wait for the results.
Since you haven't had a fever since Friday, they let us come home at 4pm, but just over-night. We went back Tuesday morning and they gave us prescriptions for home and they discharged us.
We all went outside for coffee while waiting for the discharge and Daddy said to you "Let's go upstairs and we tell Ali we want to come home." Ali is one of the nurses in 3B ward. She is the nurse who took Daddy's blood pressure and when she saw how high it was, she actually hit Daddy! :) And told him to go get a check-up! That was so funny! She's very sweet. So we went upstairs, we just got out of the elevator, when there was Ali moving somebody with a bed. As soon as you saw her, you yelled "Ali! I wanna go home!"
On Thursday and Friday we had to go to the 3F clinic for your chemo treatment. Now we have to do 30 leg needles, one a week and then the next day is the methotrexate, so for 30 weeks we have to go to clinic twice a week.

On Daddy's Birthday we went for a walk on the beach, but only for an hour or so and the rain started.

On Au. 22, Daddy went to a golf tournament, called "Victory fore Victoria", organized by Padrino, Madrina, Van and Tony. With a lunch at Vicar's Vice. There were 88 people there and a lady we don't even know made 2 cakes! One with a Golf course on it and one with a Princess tiara.
Today is Aug. 23 and you are sleeping as I write this and Daddy is at work. I want you to know about all the love and support everyone is offering. You are very loved, my sweet child. And Mommy and Daddy love you more than anything in the world! And we are very, very proud of you!

It's been a week since I didn't write anything, but there's not much to say, just that we've been home for 2 weeks and you are healthy!!!

We'll check in to the Hospital on Sept. 3 for the high-dose methotrexate. They will start it on the 4th and Daddy and I hope with all our hearts that it will not make you very sick. The Dr. said it will make you sick! We hope it won't and so far you reacted very well to the medication, so we really hope for the best.

You are wonderful, you give us strenght and courage to get through this. As Daddy said yesterday, the love we all have for each other will help us get through this together, as a family. We love you so very, very much!

You are so unbelievably strong! You amaze us every day! On Sept. 2 you had a Lumbar Puncture, you woke  up, ate and half an hour later you were running! Next day you had the high dose methotrexate and the Dr. said it would take 3-5 days to clear out of your system, but guess what? We were home 2 days later! Today is Sept. 8 and you are fine and we hope that you stay fever-free and the whole rest of the treatment will be as out-patient. We love you, you strong little Princess!

Sunday, September 11, 2011

Memoirs for my daughter, part 5

July 24
It's noon and you are sleeping and Daddy's out for groceries. Daddy has to buy more sushi and caviar, you've been eating them every day since the beginning of your treatment.
Last night for the first time, you asked me to get out of bed and you wanted Daddy, so you slept with Daddy. For a couple of hours. At 2am you woke up and asked for me, so I came to you, then at your request, we moved to Daddys' bed. Then you and Daddy moved back to your bed, then you asked for mommy, and we slept in your room, all three of us. You were very restless all night.

July 25:
God give me patience! I prayed for the last two nights as we've been moving from your bed to Daddy's bed, to the couch and back yo your bed! And then again...
But it will all get better soon and then maybe tonight will be better.
We went to see the Thunderbirds game today, and we had a nice time, you ate a few bites of sausage and two fries! And we were happy with that! During the steroids treatment, you would eat a large portion of fries from McDonald's, a jar of caviar, a tray of sushi and countless sausages throughout the day, plus much more, and now we're happy if you eat a hot-dog or a quarter of a potatoe!

July 26:
Last night was much better! You still woke up, but it was nowhere near as bad as the two nights before.
We went to the store today!!! The first time in 6 weeks! What an accomplishment it seems! What a great thing to do!Things that we used to do every day, now seem like such a big deal! Oh, how life changes from one day to the next! But if God would take me back to the day you were born and give me the choice between the magnificent, wonderful YOU, who will get diagnosed with Leukemia, at age 2 or another baby who will never get as much as a cold, I would still chose you, a million times, no questions asked! You are so wonderful, so perfect, so smart and we love you more than anything in this world! And not only because you are ours, but for everything you are!
As I write this, we are sitting outside on the grass, in the back yard, you are sitting beside me, playing with crayons (you are not interested in coloring, but in taking the paper off of them :) ) and Daddy is cleaning the garden, taking the weeds out, as we are waiting for Madrina and Padrino.
This morning I had to call Madrina to give you a hug over the phone to take your medicine and eat! So far, we've called Madrina, Granny or Diana to hug you over the phone, so you take your medicine and eat! :)

July 27, 2010:
Last night was... tough, to say the least! You not sleeping, we got used to, but now you are crying during the night, too. You wake up and cry. That is so new and unususal for us, we don't quite know what to do to make you happy and to help you calm down and go back to sleep! But whatever I do, is just not good enough. You cry and scream and kick and pull my hair, and then we move from one bed to another or the couch, either with me or Daddy, whomever you want at the moment. Oh, we all need sleep. You need rest, to stay strong and get better, we need sleep to stay strong enough to take care of you! But with a lot of love and patience, we will get through this. We are a strong family, we have a lot of love for each other, we will all pull through this. The times mommy breaks down, Daddy's strong and puts me together; the times Daddy can't keep it together anymore, I am strong for him. And we both get strenght from you and from the love we have for you. We can not and we will not give up. We have to be strong for you, our sweet litlle baby! You are our life, right now you are our number one priority.

Memoirs for my daughter, part 4

Today is July 22, and for the first time, we shared a room last night. Our roommate is Ryan, a teenage girl. You woke up crying at about 2am and Ryan woke up, went to her closet, pulled out a blue Nestle bear and gave it to you. We named it Ryan.  She gave it to you and said: "Oh, It's OK to be upset, I get upset sometimes, too." You also got a big brown bear from Kathy, the nurse in PCCU, the one with a girl your age, named Rowen.  And a cream bear from the bikers in Hamilton, who donated bears for all the children in the Hospital. Yesterday, Vicky asked me if it would be OK to bring you a dress; she said she got it last summer (2009), when she went to a wedding and the dress was made for a litlle girl who was supposed to be in the wedding, but didn't attend, and the bride gave the dress to Vicky to give it to whomever she wants. Vicky said that for a year, she never met a litlle girl who she would've thought was "special enough" to get the dress. You also got a lot of presents from the people at Daddy's store, which only shows us how many thoughtful pleople are out there.
We came home today with antibiotics and some oral chemo. You fell asleep at night and for the first time, you were sick, you threw up. It made you wake up and you were actually saying "Sorry, mommy, I made a mess." Like anybody cares about the mess! You went back to sleep and were fine the rest of the night, and woke up at 5 am and asked for Daddy, so we moved to Daddy's bed. We slept with Daddy for the first time!

July 23:
Today has been a good day. Steroids are out of your system and our happy baby is back! It has been a hard month for all of us, but especially for you, my love,  with the mood swings and the anger on top of everything else. I think it has to be really hard for you not to understand why you feel so very angry and you're still so young, you have no idea how to control that anger.
You woudln't take your medicine today, so after a while of trying and begging I had to force you and I, again, apologise to you for that. I also hope you understand that Daddy and I have to do this. We have to make sure you take your medicine and the Leukemia stays away forever and you can have the normal childhood you deserve. Even though, I know we will forever get paranoid, every time you'll have the slightest fever or sign of a cold. Oh, how I long for us to be able to do the simple things we used to do, like playing in the back yard, or playing with mud in the garden or even go to a store.  I would love to see you give Isabel hugs and play with her. But you both know that until you are better, it's not safe for you to do so. And you are so good and so understanding about it and about everything and so very smart, you make Mommy and Daddy very, very proud and we love you more than anything in this world.

Memoirs for my daughter, part 3

We went home on July 18 and went back to the Hospital with yet another fever, only 2 days later. On July 12 you got pretty sick again and Mommy had to make a big fuss again for them to do something. I demanded that either a Dr. gets in your room in the next 2 minutes or the PCCU team is called!. Your fever was 38.5C and your hands and feet were cold and you started shaking again. Dr. Lieberman came in nad said that you were septic, but not in shock yet! and administered fluid right away! That helped immediately.

July 15, finally, THE day! Day 32! Steroids are over with! Oh, the time we had! It was so very hard to sit on the bed beside you and watch you wiggle and scream, while you wouldn't even let me touch you! You were pulling your hair, my hair, you were kicking and screaming, hitting your head with your tiny fists, hitting me, for no apparent reason! During the 32 days, Daddy only saw you once doing this, it so happened that every time you had a melt-down caused by the steroids, it was when Daddy was at work! But they are over!
The Dr. took a bone marrow sample and on July 16 we had the results back. YOU ARE LEUKEMIA FREE! There were no leukemia cells found! Oh, the happiness, the relief! I finally saw Daddy smile again!

You were supposed to get a high dose of methotrexate today, but because the Dr. found an bacterial infection in your blood, we will do another treatment for the nex cycle (each cycle lasts 3 weeks).
The CBC (Cell Blood Count) is going up, you got some imune system now and things are getting better.

On July 19 the Dr. gave us the OK to take you out of your room, for walks, around the Hospital, so for the next few days you came downstairs with Daddy and Mommy for coffee.
Madrina and Padrino are still coming every day to see you. They love you very much, they are very supportive, Padrino is so ready to make a right fool of him-self just to see you smile, is very touching.
Also, Granny came to see you a lot. I love your Granny! She is such a nice, loving woman. I've also been calling Diana every day to tell her what's happening. And if I didn't call her one day, she would call us.
Today I met Christine, the nurse that was in the ER on June 9. She remembered your name, my name and she told me how impressed she was by you and how touched she was by the bond between us.

Memoirs for my daughter, part 2

For the next few days, a lot of Doctors, nurses, pharmacists talked to Daddy and I about the treatment, the medication, duration of treatment. So much information! Then came Sabrina, who told us that you could take part in a study conducted by the Dana Fabrer Institute in Boston, where they have very advanced technology and they could detect even the smallest Leukemic cells (MicroResidual Disease) in the bone morrow or the spinal fluid.
On June 15 (which would've been my Ota's Birthday), they sedated you and inserted a Picc Line in your arm, so they administer all the medication or draw blood through it, so they won't have to poke you every day and damage your veins. They allowed Daddy and Mommy to come into the Sedation Room with you, and Mommy held you until you fell asleep. It was so very hard to set you down on that bed and walk out...
On June 16 we started the official treatment. We started with Prednisone for 32 days, a steroid. They advised us that the side effects are huge appetite, big cravings, taste changes and mood swings! The hardest one to deal with was going to be the mood swings, the anger, the crying.
On June 19 we started the chemo-therapy for the next four days. The dr. said that the Doxorubicin could make you quite sick, but it didn't. You handled it really well. So far you haven't been sick once! I am so happy you at least don't have to deal with that! You also got some Vincristine, which, apparentely, is a softer medication.

June 21, 2010
Today you got the first dose of Methotrexate, which will make you lose your hair. But as I write this, weeks later, you still have all your hair. (When/if you read this blog, you need to remember Mommy wrote everything in a notebook initially and then I transfered it all here).

June 23, 2010
Today we went home for the first time since all this started and we heard you laugh! You were in the kitchen with Daddy. I promise you, my sweet child, your laugh is the absolute most precious sound in this whole wide world!

we had a good three days at home. But on June 27 I woke up at 4am and checked you, because you fell hot. Your temperature was 38.3C, so I woke uo Daddy. We called the Dr. on-call and she didn't call us back. So at 5am we were in the ER.
You got very sick, very fast! The Dr. in the ER was a resident who had no clue what to do. So, after Mommy yelled at him, the PCCU team came to assess you. They said you were on septic shock and they administered a lot of IV fluid, very fast and also a blood transfusion. For the first time in your life, you looked sick, you had a high fever, your had was burning, while your hands and feet were freezing, you were sweating and shaking! It was very scary to see you look sick, to see the Dr. in a state of half-panic! To see them all around you, trying to stabilize you, while ignored us, nobody had the time to explain what was happening! Their first and only concern was you! As it should be! Our feelings did not matter at that time, the only thing that mattered was that you were stabile. I didn't really know what septic shock was, I didn't know the whole extent of it and Daddy explained to me weeks later, when you were fine. I made an official complaint against the whole of ER, for sending a resident Dr. to try and treat you with Tylenol. I'm still waiting for an answer on that! We've been in PCCU again, for 2 days, and then we got moved into 3B ward and we stayed there until July 8. They could not trace the source of your fever, so they kept us there until they were sure you were fine even without the antibiotics and got no more fevers.
The nurses are just unbelieveably nice and kind. You just love Ashley! She's very pretty and she's very kind to you. And then there's Vicky (short for Victoria) to whom Mommy finds it very easy to talk. She takes her time explaining what we need to know.
And, of course, Madrina and Padrino have been there every day. They really care and we congratulate ourselves for chooseing such good God-parents fo you.

Memoirs for my daughter

Hello, my litlle Princess.

As I start writing this, you are already better. At first, I was too heart-broken and way too overwhelmed to even think about writing all this down so you can read it when you are all grown up, if you so choose.
But today, July 18, 2010, I finally got to it and I will continue to write for the next two years, until July 17, 2012, which will be the last day of your treatment. So, my sweet baby, here's the story of your recovery from A.L.L.: Acute Lymphoblastyc Leukemia.

It all started at the beginning of May with a simple fever. And then, a couple days later another one. And then on May 20, a visit to the Paediatrician, who reassured us it was only a virus. And then another fever, on May 24, when we went to the E.R. The diagnosis once again was that it was another virus. So until June 9 you had fevers, on and off, which would dissapear after a dose of Advil. On June 8 the fever started getting more and more agressive, it would not go away after the dose of Advil. I called Dr. McNay (your paediatrician) on June 9, I told him it's only getting worse and he told me to take you back to the E.R. I called Daddy, he left work, came home and we took you to the E.R. again. There they collected a blood sample and an hour later, they said they were inconcludent, so they took another one. A couple of agonizing hours later a Doctor came in the room and told us that it might be Leukemia. It was the worst thing anybody could have ever told us! We were heartbroken, devastated. I hope you will never know how that feels, when you will have children. I can not explain in words what I felt that day. It was as if someone reached into my chest and pulled my heart out. I was so scared, I didn't know anything about ALL, and I thought I will lose you.
I honestly can not tell much about that first night in the Hospital. Because I don't remember it.  I know they transferred us from ER to the PCCU (Paediatric Critical Care Unit). The next morning, Dr. Scheinemann took a bone morrow sample and a spinal liquid sample to have them tested in the lab. Around 6pm she called daddy and I to a small room. I told Daddy that is not a good sign if she won't talk to us in the room. Unfortunately, I was right. The nurse in charge of you, Kathy came with us in the room, which I guess was for moral support, more than anything else. She has a little girl, 2 days younger then you, and I think you really got to her, it really affected her what was happening to you. Anyway, Dr. Scheinemann informed daddy and I that the diagnosis was now officially confirmed, you have ALL. I don't remember much about that conversation, I remember Daddy crying, I remember asking if they can make you better, I remember an affirmative answer from the Dr. That was the best news we had in the past 24 hours! We were not going to lose you, after all. Oh, the relief! I couldn't even imagine being able to breath without you! You are the reason of my life! I love you more than life, I would kill and die for you a thousand time! The lenght of the treatment didn't matter, the 2 years didn't matter, what matters is that after the two years you will be better! You will grow up to be a Doctor, or a lawyer, or a waitress, no matter what, doesn't matter, important is that you will grow up!