Life Changing Moments

What we thought was a bad tummy bug changed our whole world...

Day 1

On Thursday, February 2 Gene took her in to see the doc for some stomach pain.  We also had a list of ailments that had been present the past 4 weeks since our New Year's trip to Mexico.  The list was nausea, occasional vomiting, bruising easily, low grade fever and fatigue.  We thought she might have picked up a parasite or just caught the flu, again.

The doc ordered some blood work and a chest x-ray.  After the labs Gene took Kennedy home and went to work.   He got the call around 1:30 that Kennedy needed to be admitted to Loyola Medical Center.  Kennedy's hemoglobin counts were very low as were her platelets.  Gene had asked what that meant and the doctor said she was severely anemic.  After prodding more, the doctor said it looked like early leukemia.

We both flew home from work and had Kennedy admitted at Loyola.  What happened next still seems surreal. Once we got a room, we were met with Dr. Manera ( a hemoc doctor) . The words were flying. ..leukemia...hoping for ALL...bone marrow...spinal tap...chemo.  We were so confused.  Everything just stopped but it was moving so fast at the same time. Gene excused himself to get sick. 

Then it started moving fast.  First the I.V.  The allopurinol.  When I asked what the medication it was, they told me it was to protect her from the chemo.  Chemo?  She was having chemo?  I thought the bone marrow biopsy and spinal was to double check the assumed diagnosis, apparently I had missed something in the whirl wind of information.

We were taken to the playroom for a bit where the social worker handed me a book to read to Kennedy called, "Teddy has a Central Line".  That was the first and only time I heard that term until later that night.

They started Kennedy on a transfusion of platelets and two bags of blood. Her platelets at admittance were at 13 and her hemoglobin was at 4.2.  After the transfusion, she was brought up to 90 platelets and 8.5 hemo.  They needed to get her counts up to be ready for surgery...what surgery?

After asking around we were told Kennedy would be getting a central line to start her chemotherapy treatments, which would start the next day. 

The first chemo treatment would be administered at the time of the spinal to prevent the leukemia from spreading to her brain.  The next would be given through the central line once it was out in.

We were up all night - sleep wouldn't come for Gene or me.  During a personal moment of weakness while K was sleeping, Gene and I broke down.  We were quiet but apparently K could hear us and although she seemed a sleep, she grabbed my hand and started caressing it.  From the moment forward, we knew we had to make our room a happy place because she hears everything.

Day 2

Friday the scheduling began.  Originally, the spinal and bone marrow biopsy were to be performed under twilight anesthesia in the morning and the central  line was to be inserted under general anesthesia in the evening.  Luckily an operating room became open and they performed both at once at 1 pm.  Our friend Masha did her residency here as an anesthesiologist so she called ahead and talked to the one that would be handling Kennedy's case which was reassuring.

The pre surgery drugs were probably the only time we all laughed.  Seeing Kennedy momentarily out of pain and acting silly let us catch our breath, even though we knew it was drug induced.  We knew what followed and we were scared to death to leave her to go into surgery.  Thankfully, all went well.

Grandma was there during the surgery and later came back with Maddox.  Maddox isn't doing so well with all of this.  He's a typical kid and just doesn't get why mom, dad and K can't be home.

Misha and Sergey also came that night.  I think Sergey didn't know what was going on until that night and he did a great job holding the tears but I saw his shock.  We do our best to keep our room a happy room for K.  This is often hard because sometimes I just want cry hysterically and scream..."why her???"

This night was her first chemo treatment and she did ok.  They loaded her up zofran so non- leukemia nausea didn't truly come until day 3.  It came in waves. 

One of the most challenging elements of the chemo are the oral meds.  K can't swallow pills (though we tried to practice with M & Ms).  They also seem to cause her a bit of nausea, like everything else.  This scares me since she will need to take oral steroids twice a day.    Mixing meds with ice cream right now seems to be our best shot.

After 38 hours straight of no sleep, Gene and I slept in shifts. Gene played with her until midnight and I colored with her at 2:30am. 

Day 3

After finally sleeping, waking up to our new reality was hard.  It was like getting the news all over again and having to digest this new life for us all.  Gene needed to leave to spend some time with Maddox.  We feel so awful he is alone and left out but grandma has been doing a great job of hanging out with him and keeping  him busy.

I was scared to be alone.  Our princess requires so much attention and needs so much, I was afraid I couldn't do it alone.  Taking her to the bathroom is challenging.  Carrying her and pushing the I.V. Is often complicated. I made it through and we had a good day (as good as it could get).

Angela came to visit in the morning and brought some food.  Kennedy was feeling ok for a majority of the visit and Angela was nice enough to let K put makeup on her.  When K started feeling nauseous, she politely told us she wanted to be alone and Angela left.

During our alone time, I told her about her hair and that it would be gone sometime soon.  We both cried a bit but after looking at pics on the iPad of other kids like her, she seemed ok. At one point during the day, she asked if she could just cut off all her hair now and get Barbie hair.  At another point, she asked if we could take lots of pictures of her hair so we don't forget it.

Mid-day, cousin Nicole and Nathan came by.  I am so thankful for Nicole.
She did her residency here and emailed K's doctor the second day we were here.  It always helps to have a doctor personally involved. 

Aunt Steph came too as did K's BFF Sophia at the same time.  K handled the visits well for about a half hour before she started getting sick again.  I hate asking anyone to leave but K tries to act like such a a trooper and hates being sick or throwing up in front of anyone.

More friends and family wanted to come but we asked for a break for the rest of the day.  K was exhausted and with the waves of nausea and pain, she needed a break from her game face.  Also, K is at a super high risk for infection - more people, more germs.  Any fever could set us back and is extremely dangerous.  She has no immune system right now.

Gene came back in the early evening.  I got to shower which felt great.  Kennedy ate too.  This is a first since she barely just nibbled all day.

Going to sleep was a bit of a challenge for her.  K was exhausted but fighting it to watch tv.  By 12am she was a sleep but went to the bathroom at least 5-10 more times.  Damn I.V. fluids.

Day 4

I slept, Gene barely did.  We take turns laying with Kennedy or sleeping on the bench in the room. 

At 7:30am we were told that today would be another transfusion of blood and platelets as both were low again. HGB at 7, platelets 19, white blood cells at 1.1

Before they started the platelets, she was give a ton of meds both orally and threw the port.  One of the  scariest side effects was the reaction to dexamethasone.  It caused her to itch uncontrollably all over her body and was immediate as it was being injected.  This happened two times, once last night and then again this morning.  They gave her Benadryl today before they injected it but it didn't help.  It is just awful to watch her have to endure all this.

They are worried a bit about her sugar and so are we.  Our carb addict will need to learn to eat different or insulin will soon be added to our list of meds.  She won't be able to eat fresh fruits and vegetables either as they are filled with potential dangerous bacterial.  Since she doesn't like meat, I have no clue of what we'll be feeding her that song contribute to diabetes or put her at risk for infection.

Kora visited this morning but K wasn't in any mood for visitors even though she said she wanted to see her.  She just stared ahead and watched tv while Gene and I had to coax her to take a boat load of oral meds.