Declaration

From this moment on, we are in a battle with cancer.  ALL Leukemia is a highly curable and treatable disease and we are going to kick its ass (excuse the language).  Our home and experience will be a happy one even though the road to recovery is going to be tough and sometimes painful.  Half the battle is keeping Kennedy's spirits up.  Our number one goal is her health and happiness.

A lot of friends and family have asked what they can do or how they can help.  All I ask for is positive energy sent towards Kennedy.  It can be done in prayer, visualization, mediation - whatever it takes.

We are so thankful for all the emails, texts, calls and support from our friends, family, colleagues and neighbors.  We are lucky to have such wonderful people in our lives.

Day 6

Yesterday we learned that Kennedy’s treatment would last for 2 years and 3 months.  We are still uncertain if she will be able to start kindergarten in the fall.  If all goes well, it is definitely on the radar as a possibility. 

Today was a hard day.  Kennedy woke up at 7am and threw-up.  I’m glad I came back here to sleep after my date with Maddox because it took two of us this morning.  We washed her hair in bed and changed the sheets.  Instead of her getting better and having her typical ups and downs, she seemed to get worse and just slept.  When she did wakeup, she complained of a headache and nausea.

It didn’t help that there was a parade of folks in and out today – 2 volunteers, a social worker, a radiologist to take an echo and who could forget he nurses coming in trying to push meds.  The kid couldn’t eat anything, how was she supposed to take 3-4 medications by mouth?  So irritated. 

Today’s nursing crew really got under my skin and I went a bit crazy on them.  They refused to leave the meds for us to administer.  All of the nurses prior to today would allow us to keep the meds until she had one of her “ups” so we could get them down (we usually can get things down with a bit of coaxing).  This nursing team would not leave them, therefore, when we finally got Kennedy to agree to take something, we would then have to wait 10-20 minutes for the drug and/or nurse to actually arrive.  By that time, she was having a down moment and couldn’t take them.  The nurse then took the meds away – again….so the process took 2 hours to get her morning meds down.  I went totally crazy and definitely made my opinion known about the stupid rules.  Dr. Manera was irritated they did that and said he would ensure that doesn’t happen again.

Between 9am – 12pm, we orally pushed her a steroid, Zantac, fluconazole and Tylenol.  What an accomplishment to get down when she wouldn’t even eat.

By around 1, she started coming around and ate a pancake.  There was a 2pm magic show.  We stayed for most of it and Kennedy was the trusted assistant once again.  Her cute little giggle is contagious.  She began getting ill towards the end of the show so we went back to the room.

The rest of the day was uneventful except the doctor came and said she could go home tomorrow!!!  I’m trying to keep the excitement at a minimum because of course anything could still change.  She did have some blood in her urine so that may be an issue.  I will know later.

She will get more platelets infused tonight.  Then we just wait and see.  Gene went to take Maddox to wrestling so it is a girls night for K and me.  Looks like a movie night…or maybe some arts and crafts.

Day 5

Day 4 (cont’d)

The middle of the day got a bit hectic – Shurik, Misha, Linda and Maddox all came at the same time.  At first, I think K liked the distraction but then it became a bit too much.  Her blood pressure shot up to 147 over 79 and she began feeling ill. 

She was ill most of the day yesterday until the evening when we learned that her Zofran had been stopped with the direction to administer “as needed”.  Well, it would have been nice if someone had told us because we could have made her day a lot better by calling the nurse when she was nauseated instead of assuming she was still getting the drug every 4 hours.
 She received her zofran later in the evening and that changed everything. K was K and it was great to see.  She was giggling and acting like a goof.  We loved it.

They changed her dexamethasone from IV to tablet form.  She took it in ice cream and there was no itching – thank goodness!  They were also determined to make her go potty so she downed 2 glasses of apple juice mixed with Miralax.  We tried to also get her to take mineral oil but she refused.  Trying to force us did no good, she bit Gene so we let it go.  We will be picking our battles carefully. 

I was supposed to go home and be with Maddox but K’s belly began hurting and they ordered another belly X-Ray.  The results came back normal but by the time they did, it was to late to hang with my little man so he stayed at Grandmas and built a fort.

  Day 5

We slept well.  Mom, dad and K went to bed at 12 and made it 5 hours straight with only 4 trips to pee.  Our nextdoor neighbor began screaming and tantruming which woke us all up around 5ish.  

I went to pick up Mr. Maddox at Grandmas to take him to school around 6:30. I intended to shower, rest and return later in the afternoon - that was until I checked in with Gene.  K woke up with intense leg and arm pain.  I headed back to the hospital and was back by 9:30am.

By the time I got back, all was well – just needed a bit of Tylenol. 

Trying to sort out the pains caused by Luekemia and the chemo is beyond challenging. 

Ronald McDonald visited the hospital and Kennedy actually walked down to the playroom for the magic show.  She helped Ronald do his show and was giggling the whole time.  After, she created some great arts and crafts for Valentine’s Day.  It is always so nice to see her happy, especially when all seems ok for more than 20 minutes at a time. 

I’m supposed to go home tonight and take Maddox to dinner and let him sleep with me in bed.  I promised because I couldn’t make it yesterday.  I’m scared because tonight is another round of chemotherapy.  I’m scared for K and I’m scared I’ll let Maddox down, again.

Monday Afternoon
Kennedy just got pegaspargase for chemo treatment.  Before the treatment began, Dr. Manera came in to tell us about the drug and the potential side effects.  Administered for about an hour, the first 10 minutes are crucial and after that, serious side effects (including fatality) can occur up to three weeks following. 

They brought with an epi-pen in case of an adverse immediate reaction but we will need to keep it for the next three weeks, just in case.  Common side effects are hives, hyper-sensitivity on her skin and jaw and itching.  More rare side effects (less than 5%) include stroke, inability to breathe, and pancreatitis.  Not sure why, but the doctor then went on to tell us that a boy he treated got pancreatitis and died from the treatment. I think he was trying to tell us to make sure we stay on top of any abdominal pain but that fact made me want to throw up. 

Of course, I made it worse by asking the nurse administering the chemo about the boy who died.  He was 8.  His parents were an older Italian couple who struggled to have kids and he was their only son.  Apparently he was having a bit of stomach pain at home that was overlooked (it’s a common symptom with the Leukemia) and by the time they brought him in, it was too late.  Why in the world would I have asked???

After being told all this, my stomach was in knots and Gene and I were stirring around the room like crazy as the drug was being administered.  We alternated from non-stop movement, to fidgeting, to just stroking K’s hair.  Nothing happened during the treatment which let us exhale….for now.  We still have three more weeks to go on this on.

Peg (its’ nickname) is not an option in the fight against Leukemia.  These are the following things we need to look for and considered an emergency.  Scary enough…she’s had many of these over the past few days:

·      Nausea (interferes with ability to eat and unrelieved with prescribed medication)
·      Vomiting (vomiting more than 4-5 times in a 24 hour period)
·      Persistant upper abdominal pain or pain that worsens with eating
·      Abdominal swelling
·      Diarrhea (4-6 episodes in a 24-hour period)
·      Unusual bleeding or bruising
·      Swelling, redness and/or pain in one leg or arm and not the other.Extreme fatigue (unable to carry on self-care activities).
·      Yellowing of the skin or eyes
·      Unusual thirst, need to urinate frequently
·      Swelling of feet and ankles or sudden weight gain
·      Confusion, excessive sleepiness, hallucinations (seeing, hearing or feeling things that are not there), agitation, or disorientation (not able to recognize familiar surroundings).

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.