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.