Day 82

This week has been hard.  I’m tired of pretending I’m strong and everything will be okay because this week, even I’m not buying my positive BS.  I’m tired of telling other people that “it’s okay, we’ll fight it – there is a high survival rate for ALL leukemia”.  After this hellish week, I’m more afraid of what the meds or infection may do to her than cancer.  People should be comforting me, not me them but when they try, I feel uncomfortable and wind up comforting them instead.  And then, the people that want to listen, I don’t want to talk to but complete strangers that say “I’ve heard”, I want to break down and start sobbing – for example, the guy that was helping me buy a DVD player at Best Buy today.  Thankfully I pulled it together before anything came out.

Enough about me, let’s talk about the itchy red rash that bombarded us on Monday.  Needless to say, I didn’t sleep all night on Monday, worrying if her throat would close up.  I watched the clock intently for each 4-hours to pass so we could administer Benadryl.  Gene slept a few hours but barely enough. 

I woke up Tuesday morning sick as a dog so Gene took the day off of work to take Kennedy to clinic at 9am.  I wanted to go but the risk of getting her sick was to high so Gene told me to stay home; I didn’t get out of bed all day.  Gene called me when the doc entered the room.   Dr. Sarvita, thought the rash was from meds but couldn’t say for sure it was Bactrim.   I disagreed – Dr. Edan had been spending her sleepless hours looking up the side effects from each of the meds K has taken in the last month and Bactrim was definitely the culprit.  She then went on to say we could try  Bactrim again in 2-weeks to know for sure….really?  Hell no.  There is no way Kennedy will be getting a Sulfa based med in quite some time.  Also, her birthday party is the weekend she would try again and the last place I want to spend that day is in the hospital with a restricted airway and a red itchy rash.  The allergic reactions to Sulfa can be so severe and I consider us lucky that we just had a rash.  Stevens-Johnson syndrome can also occur from Bactrim and I am not willing to take that gamble to “see”.   The doc will be prescribing a new med in place of Bactrim which is more of a second line of defense against PCP pneumonia and not as effective as Bactrim.  The bad thing about the new drug is that they will continually need to check her liver enzymes as the meds tend to cause liver issues.  Do we have any other options???

Dr. Sarvita suggested a few days of prednisone steroid and a heavier antihistamine but she wanted Kennedy to first see a dermatologist.  She made an appointment for Kennedy at a derm doctor in LaGrange for 11:30.  Between appointments, Gene took K out for pancakes and right as they got their food, Kennedy’s rash started to make its appearance known.  She hadn’t gotten Benadryl all morning and the rash had found its way all over her body and face and she was just miserable.  She didn’t eat. 

The dermatologist, who also brought in more doctors, thought the rash was likely caused by Bactrim and thankfully did not suggest a steroid – saying the steroid would only temporarily make the rash disappear, only to return again in a few days even worse.  They prescribed 2 antihistamines and Zantac.  This has thankfully been doing the job and there has been no rash today.

 

Tomorrow is clinic where she gets her spinal chemo infusion and is then admitted for a 24-hour methotrexate drip.   We made her a “no pokeys” nightgown since she already grew out of her favorite shirt.  We also let the kids stay up for a late snack together since they won’t see each other for a couple of days.   

I feel sick thinking about all of the chemicals they are pumping into her little body and what the next reaction may be.  No one prepares parents for having a sick child and what that means; the toll it takes on the family, the siblings and the sick child.  Today I can’t hold it together and I can’t be strong and I wish I could be okay with that. I’m just tired and scared, maybe tomorrow will be better.