Day 240

What a Christmas…
Reader discretion advised.
This week has been the week from hell. Let’s just say santa didn’t visit this year. Sarah hasn’t wanted to write lately as to not ruin your holidays but now that Christmas is over I thought I should let all of you know what has been going on. On Monday Sarah started having intense nerve pain because her nerve endings are being burned by radiation. Not fun to say the least. She also has two large open sores on her radiated area that are completely raw. Her pain tied to the current status of her skin is becoming quite more than she can handle. Tuesday we went in to the infusion clinic as planned for her dehydration and got as much pain help there as possible. For those of you who don’t know, pills pretty much of any kind, don’t work for Sarah. Her dad is the same way. She hides her pain for as long as she can but when she starts shaking the jig is up and I step in to help her fight the fight. Sleep, or anti-nausea medications even in high doses and receive no benefit. She seems to only get the negative side effects, most commonly nausea. When she is being treated for nausea anyway, the last thing we want her to do is take a bunch of medication that doesn’t work, but only makes her sick. That would be kind of counter-productive. Wednesday, Sarah’s radiation oncologist tried giving her a pain medication that targets nerve pain specifically, but once again after taking the pills she received no pain relief only nausea. Because she had received no relief from pain we went in to the emergency room so she could receive IV pain and anti-nausea meds later that day. These help but don’t last that long. Because the IV medications are short lived, the emergency room really is only able to give her temporary relief. However in this case, some relief is better than none. Thursday, Sarah went back in for radiation and after they sent Sarah up to their infusion clinic so she could start the evening with a little relief and try to skip the emergency room. This really only proved partially helpful and ultimately left Sarah with a sleepless night of agonizing nerve pain. Friday Morning (Christmas Eve) we went into the infusion clinic in Everett as planned to treat Sarah’s dehydration, they tried to treat her pain but nothing seemed to help. Sarah wanted to keep trying things but it was obvious that on that day with the level that her pain was at she was just going to be miserable. This was a call that I had to make and let me tell you, looking Sarah in the eyes and telling her that there was nothing else they could do for her that night was one of the hardest things I have ever had to do. I am sure it made her feel very hopeless. After that we went home for a few hours and then tried to make the best of the day and went to my parent’s house for the Christmas festivities however bittersweet they may have been for us this year. Friday Sarah tried her hardest all day at her parent’s to make it through without needing to go somewhere for pain relief, but by the end of the night, she was in so much pain she was shaking, and on the verge of tears. I made the decision to take her in to the ER again. There they were able to make her comfortable enough that she fell asleep, but by morning she was already in agonizing pain. This morning, a little worse for wear, Sarah dragged herself out of bed and we went to her parent’s again for their 2nd Christmas celebration. By this evening I could already tell that I would be taking her to the emergency room yet again. So, to review, since Monday Sarah has been in an infusion clinic 3 times, in the ER 3 times and has been poked for an IV access a grand total of 20 times (all in the same arm). Now when I said the week from hell you all know what I’m talking about. Let me tell you Sarah is tired, exhausted, in severe pain, has two raw wounds on her chest, and is 100% at the end of her ability to cope with all of this. I don’t think she will even be able to stand her remaining 7 radiation treatments. Tomorrow I will be calling her radiation oncologist and discussing with her the possibility of cutting Sarah’s radiation short.

Through everything that has happened this week Sarah has been a tremendously good sport. In light of all of her pain she has been a saint making sure to say Merry Christmas to everyone she saw and even going as far as to bring doughnuts in for the entire infusion clinic staff on Christmas Eve. She has gone above and beyond and tried to think about others during this holiday season, but she is just at the end of her rope and doesn’t want to be sick anymore. She does a very good job of hiding her pain and discomfort around people, but all the months of doing that is starting to take a huge toll on my sweet girl.

As I am writing this, we are in the emergency room waiting for an IV therapist to come and put in an IV in Sarah’s poor arm. We have been here for three hours already and they have yet to come and get an IV started so they can get her comfortable. It’s not because they haven’t tried, but Sarah’s arm has hardly any veins left that are viable.

Please pray that the radiation oncologist will see Sarah’s struggle and either come up with a serious solution to fight her pain or discontinue the few radiation treatments she has left.

Kirk