Thursday, September 2, 2010

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 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 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 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.

1 comment:

  1. Lea and Mckall, I was not here during the first weeks of your diaganoses and treatment. Thanks for the details.Mckall you are so amazing with the way that you handle all that you have gone through. I am thankful that your dad can give you priesthood blessings that give you comfort and peace. I know that you will look back on this time and see what one tough ckick you are. You will accomplish many things in life and do it with grace just as you are gracefully dealing with luekemia. I love you so much.

    Grammy Shepherd