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'. :)
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.
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!