Tuesday, September 7, 2010

Induction: The first phase of treatment

The day we brought you home from the hospital was a great day.  The moment you found out you got to come home your spirits immediately lifted and you had a big fat smile on your face!  We were greeted by a decorated house and all the neighborhood waiting to see you.  It was so amazing to watch you take it all in.

You excitement about going home came out in silly faces!
That first night home we had a home health nurse come over and show us how to give you IV antibiotics through your picc line.  It was an out of body experience to me, and I was scared. I kept thinking that no one should have to hook their baby up to an IV before bed.  But, it was definately better than having to stay in the hospital so a nurse could do it for me!

If you look close you can see the IV tube in your arm.  You were sleepy and sad.  It was late and the home health nurse had just left.
You had to go back into the Hematology/Oncology clinic (they call it the hem/onc clinic...we just call it clinic) every week and get chemo through your picc line, chemo in your spine (lumbar puncture), and then you took an oral steroid. (steroids, in high doses, are an anti-cancer drug) We were warned in the hospital that we would hate what the steroid would do to you.  They told us that our sweet little McKall would turn into a little devil.  That you would have rage issues, and that you would scream and throw fits, and that you would want to eat constantly.  They also said your cheeks would get really big and puffy, and that your belly would get big too.  They also said that the muscles in your legs would begin to atrophy and you would struggle to walk. They said you would feel grumpy and sick and tired.  They were right...

Bruises from the Back Pokes (lumbar punctures)

Getting puffier...

And puffier...(notice belly hanging out) :)

And puffier....but still smiling!

It was really hard to watch you feel so sick and tired all the time.  Most of the time when kids are sick they feel sad that they cant play with their friends or ride their bikes, but you didnt. That was the hardest part...you were so sick that you didnt care what anyone else was doing.  You slept a lot and watched a lot of tv. Sometimes you would ask me to carry you into your room so you could lay on your bed and just look out the window.  A lot of times when we had visitors you would retreat into your room because the extra people and conversation was overwhelming. Plus I dont think you liked that everyone was always asking you how you were feeling and talking about you all the time.  You just wanted to be left alone.

While the steroid did cause violent mood swings, we could always see our sweet little girl through it all.  You felt so bad for some of the things you said and the way you acted that you would often burst into tears after a fit and apologize and say, "I love you mommy."  You also were really funny about food.  You LOVED to eat.  Especially salty foods.  You liked "yellow chips" (original Lays), and pepperonis.  You could eat an entire package of pepperonis in one sitting if we let you.  The doctors said that the cravings would be short lived and that we should go ahead and indulge you because as soon as you were off the steroid you would have no appetite. The funniest thing you craved was Fritos chips dipped in peanut butter.  I dont know where you came up with that but thats what you wanted.  The first time you asked I laughed out loud, but you ate every bite!  Youd smile at me and giggle through your big puffy cheeks!!

Because you had a picc line, bathing was a process. We had to wrap your port in saran wrap and then wrap the saran wrap in a bandage and then sponge bathe you so it stayed dry.  You had surgery scheduled to get your port placed on June 24th, and you were so excited to be able to swim and take baths and showers again. I was excited for that too, but nervous about how you would adjust to having it.  You really struggled with your picc line at first. It was kind of a love hate relationship because you loved not having to get poked all the time, but you hated that everyone could see it and would often cover it up and tell people to stop staring at it.  You didnt like all the extra attention.(plus the steroid amplified all those emotions)

This is you at your puffiest, and its a good pic of how you had to bathe for awhile.
You were pretty sick for the whole Induction Phase, but gradually started to get used to our new life.  I will forever be in awe of your resilliency and your ability to deal with whatever life throws at you in such a positive and forgiving way. I dont know how we did it that first 8 weeks, but we made it.

Your port surgery went really well, but you had a really hard time waking up.  You were really upset and afraid.  You cried for over an hour after you woke up and everyone learned pretty quick not to bug you because you were mad at the world. It was hard to be there for you but not be able to comfort you. Once we got ok'd to leave the recovery room we had to go back upstairs to clinic and get chemo.  That didnt go over well with you either because you were starving! You didnt want to wait for chemo...you wanted to eat! We made it through the rest of the appt and made it to get some lunch...you wanted cheesey breadsticks and pizza from Little Caesars, so thats what you got. You earned it kiddo!

PS. Each phase of treatment (there are five) has a name. The first phase is Induction.  They call it that because the purpose is to "induce" remission. By the end of this phase they wanted to be able to look at your blood and see 0 leukemic cells.  The prurpose of the other 4 phases is to kill all the leukemic cells that they know are there, but cant see.  We were so blessed to receive the good news that you had 0 detectable leukemic cells by the end of Induction! Good Job McKall!!

PPS. Among the many tests they did on you was a genetic test on your actual leukemic cells.  These genetic tests are very important because they tell the dr's the different chromosomes that are found in your particular type of Leukemia. The doctors know which chromosomes show a rapid response to treatment and which show a slow or delayed response to treatment. (arent the docs amazing?!) So the doctors can actually tailor a treatment plan to the individual based on what chromosomes make up your leukemia. So, if you have slow responding chromosomes they know they need to give you a more intense chemo regimen, and vice versa if you dont.  The doctors said that MOST people have a combination of both rapid and delayed response chromosomes in their cells, but were surprised to find that you had an unusually large number of rapid responding chromosomes! Awesome news!  That jumped your prognosis percentages from 85% to 93%!! You cant get much better than that with any type of cancer.  Thank heaven for the power of prayer and fasting!

1 comment:

  1. Wow, Lea, this is so interesting to read and learn. I'm amazed at what you have gone through. Heaven has a place for you reserved at the top! Jake, on the other hand... well, we'll see. Just kidding. You guys are both handling this so well and we are so grateful to have you in our lives. Serious. Tears in my eyes. We love you!