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.