Mostly Up

Last night ended on a high note with Kaelyn being allowed to drink a couple of ounces of chocolate milk, after much begging on our part.  She was definitely in heaven for the 60 seconds of chocolate milk, and thereafter.

Following such a delightful snack, Kaelyn slept through the night, nearly until 10 o'clock the next morning!  Because she did well with the chocolate milk, she was OK'd to try some breakfast.  She was so happy she was allowed to have scrambled eggs and gobbled them up in no time.  She had some cream of wheat and a small vanilla milkshake on the side.  It was bliss!

She had lots of visitors today, which meant lots of gifts too!  Thanks to everyone for thinking of Kaelyn, the gifts have definitely cheered her up!

As far as progress made today, Kaelyn had breakfast and a little but of lunch, chicken nuggets and fries by request (healthy, I know, but at this point she can have whatever she wants).  She has not eaten anything since then, but a couple other things have changed since then too.  The pain management team decided, with our approval, to remove the epidural and move on to oral pain management.  Kaelyn took her first dose of oxycodone without it even phasing her.  They removed the epidural 30 minutes later, making sure there was an overlap in meds to avoid pain, and conserve pain control.  When it came time for Kaelyn's second dose, though, things did not go as smoothly!  Normally Kaelyn does NOT like to take liquid medication by mouth.  We've gotten use to chewable Tylenol at home, but they don't have anything available in that form.  Actual pills cannot be broken up and mixed into food because her dose is too small, about a third of a pill, and so that would be to difficult to measure in an exact amount.  So, when the time came for the second dose, Kaelyn was in a little bit of pain and was fighting having to take the drugs.  I don't think she even got half of the dose down that she was supposed to take, so the pain returned quickly.  Our only option at that point was Tylenol, which she still fought.  So, she is still in pain, and it's hard to help her understand how we can help that pain.  It looks like she is reverting to sleep in order to block out the pain.  The only problem with that is she isn't getting up and walking around like she should be.  As a parent, I just want her to be comfortable.  It's really hard to see her in pain, especially when typically she is so tough and doesn't complain about owies... though she does like band-aids!  

Today Kaelyn's oncologist came in to discuss a little bit of the pathology report.  They actually have not received the report back, but she talked with the pathologist over the phone.  The report has not come back yet because the pathologist found some cells that were atypical of Wilm's tumor, though the majority were Wilm's tumor.  The oncologist isn't too worried.  Those cells that are atypical may be so just because of some simple staining errors, or they may be teratoid cells.   If they are teratoid cells, the treatment would still likely have a positive outcome, there may just need to be a change in the type of chemotherapy.  So, we are hoping to hear back by Monday.  The pathologist sent samples on to an "expert pathologist" in Houston, TX, for a second opinion, so that is what we are waiting on now.

As of today, our hopes are to be discharged by tomorrow so Kaelyn can go to the zoo.  Hogle Zoo is hosting "Dream Night at the Zoo," a private evening set aside for children with chronic illnesses or disabilities.  They will be showing their newest exhibits, serving dinner, and will have several activities for the kids.  We were lucky enough to get 5 tickets, but we'll be even luckier if Kaelyn can go.  That is dependent, though, on her pain control at that point.

So, today has been mostly up.  Sometimes it's hard to remember how positive the day has been when you are currently stuck at a low point.  Our next challenge is going to trying to figure out how to help Kaelyn understand the purpose of the medicine and how it can help her.  The more she refuses to take the medication, the worse the pain will get.  I know we will need help beyond ourselves to help Kaelyn to understand, so all prayers would be appreciated.  I know this is going to take time, some pain on Kaelyn's part, and some discomfort on our parts seeing her in pain, but I just have to remember how easy we have it, and I'm just so grateful to know we get to keep her around with us.

Tomorrow will be better!