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!

The Beginning...

Looking back its obvious, but at the time it wasnt.  There were a lot of odd "symptoms" you were having. For instance, you had started taking naps again...which you hadn't been doing for at least 6 months. You'd fall asleep in weird places like in the cart at the grocery store, and a sitting up in church. We thought that was easily explained by the arrival of your little brother Tucker, and all the late nights, and visits from Grandma and Grandpa DeSoto from out of town.  You would also complain of random bone pain in your limbs.  Once in your arm by your elbow, and once in your leg, and you even limped for over a week.  These pain episodes always seemed to happen in the middle of the night and were bad enough that it kept you awake, but they also seemed to happen with a fever so we thought it was body aches.  The symptom that finally took us to the doctor was your really pale skin.  It happened pretty gradually, but got increasingly worse. Other people, people in our ward for example, seemed to notice it more because they didnt see you everyday.  So when they did see you, there was a big difference in your skin color.

A day or two before you were diagnosed.  See how pale your skin looks...

Finally, when we were all together to celebrate Tuckers blessing Aunt Jamie suggested that maybe you were anemic.  Knowing what we did at the time about anemia it seemed like a perfect explanation of your symptoms.  However, when we looked up anemia online, our hearts sank because all of the causes of childhood anemia were scary...things like aplastic anemia, lymphoma and leukemia.  So, with a heavy heart we made an appointment to see Dr. Evans. We knew, but didnt want to say out loud, that something was terribly wrong.  Your appt was on Wed. May 19, 2010 (uncle Joshs b-day) at 4pm.  Daddy came to the appt too, and on our way told me he had just got a call from Uncle Josh who said that he had cancer.  We were so worried for him and terrified about what we might find out about you.

When we got to the dr. we explained the symptoms and he did an exam.  He listened to your heart, took your temp, and felt around your belly.  After that he said he wanted to check your hemoglobin levels to see if you were anemic....it was just a quick fingerprick.  When he came back with the results he said that your hemoglobin levels were only a 5 (normal is 11-14), and that you were severely anemic.  He also said that during his exam he noticed that your liver and spleen were rather enlarged. (we learned later that your liver and spleen were enlarged because they were full of all the bad leukemic cells your body was trying to get rid of) He then said that whatever was wrong was beyond his area of expertise and he wanted us to take you to Primary Childrens Medical Center to see a Specialist.  We said, "Ok, who do we make an appt. with?" and he said "No one. You need to go right now to the emergency room, Ill call and let them know you are coming!"  Needless to say we were shocked and afraid of what they might tell us at Primary Childrens, but we put on a brave face so you wouldnt be afraid too.  You were already being so brave.

The next 24 hours were a crazy whirlwind.  We got to the emergency room at about 6pm where they immediately put in an IV access (it took several tries and they finally got it in your other hand), and started running tests.  We knew within a few hours that they thought it was Leukemia, and that you were going to be admitted into the hospital.  The next day greeted you with lots more tests that confirmed their diagnosis of Acute Lymphocytic Leukemia, and a mini surgery to insert a picc line.  They started bringing in tons of different medicines with funny names, and by the end of the first 24 hours you had had your first dose of chemo.  I cant explain our feelings at the time...we were shocked, but also so numb from all the information overload from all the different doctors, and I think we went on auto pilot.  I cried a lot, but tried not to let you see.  Dad was tougher than me, but he would get emotional from time to time.  You were so brave those first few days and we were so amazed out how well you dealt with everything.

You in the emergency room at Primary Childrens.  You had just got your IV placed and they gave you a bear...you called him"Booger Bear"

The next 6 days in the hospital got gradually harder. Only one parent was aloud to stay the night so dad would be there all the time, and I went home in the night so I could take care of Tucker and Alyssa, and Carly.  I would get your sisters off to school and then head straight down to see you.  Each day you got more and more sick.  The chemo was killing all the bad cells in your bone marrow and blood and it caused horrible leg pain. We had to force you to walk.  You would sit in your hospital bed butterfly style with all your weight leaning on your right arm.  You were so afraid to lay down because it hurt so much that you had to hold on tight to me or dads neck and we would have to help you lay on your back. It was so hard to watch you suffer and I wanted to take all your pain away, even though we knew it had to be done.

A rough day in the hospital.  Thank heaven for daddies!

The hardest day in the hospital for me was the day they had to give you the Peg shot in your legs.  You were already in a lot of pain and dad had to hold the top part of your body down and I had to pin down both your legs so they could give the shots.  You were screaming and yelling and scared and you screamed that you hated me.  I started to cry, I knew you didnt mean it, but I cried because you were hurting so much and couldnt understand why all this was happening.  The hardest time dad had in the hospital was actually the middle of the night.  You had developed a really high fever of 104 and you were miserable.  You couldnt get comfortable and you just wanted daddy to hold you.  Her tried but you hurt so much that you cried and cried and sometimes screamed.  It was hard for him to watch you hurting too.

You were really brave and good, but you struggled more and more each day.  It was hard for you to feel so trapped in that little hospital room.  You actually got to a point where you refused to talk to anyone.  You just ignored people when they talked to you.....you just wanted to go home. It was hard to watch you cope with all that was going on by retreating into yourself and zoning off into your own world.  Thank heaven for the Priesthood. You learned really fast how much receiving a blessing helped you cope and helped you feel moe comfortable and peaceful so you started asking for them often.

One of the many gifts you got in the hospital.

Through that whole stay though we still felt so blessed.  The doctors and nurses were beyong amazing, and your prognosis was awesome. We knew you were going to be ok. Not to mention we had an overwhelming outpouring of love and support from family, friends, neighbors, and ward members.  You started getting tons of deliveries of balloons and stuffed animals and visitors. Your nurse Joyce even sanitized a toy kitchen for you and had it brought in your room so you could play. It was good for you to get so many special presents because they helped distract you from all that was going on. There were tons of people bringing us meals and gifts and mowing our lawn and taking care of your big sisters.  It was overwhelming to say the least.