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).