Friday, May 10, 2013

melanoma + moms + signs from chase

saturday is going to be a brave day. they all are really, but tomorrow is going to be a big brave day.

barrett and i are going to the annual melanoma symposium at fred hutchinson cancer center. it is a day full of knowledge on melanoma so it is a day full of emotions. we have gone each year since i have been diagnosed, and it is never easy. i have a feeling that this year is going to be the toughest one yet. deep breath.

in the previous years, i heard about the treatments that were available to stage iv patients, and i heard their stories. there was always this little voice in my head saying "it shouldn't have to be their stories, and i don't want it to be mine." so now i will sit in that room, listen to the information, and when they talk about stage iv, that little voice will say "listen closely, what they are saying may now be part of your story." deep breath.

we will hear about modern treatment recommendations by stage of disease, ocular melanoma, the next generations of immunotherapy treatment, nutrition for melanoma (wonder if i will get some new recipes;)), patient panel (this is when four or five patients tell their story, there is never a dry eye in the auditorium for this portion of the day), and finally a talk on the "four stages of hope."

we will go. we will shed tears like we always do. we will be so thankful (as we are each day) for all of the doctors who work on melanoma every day. we will feel grateful for the opportunity to be part of a day focused on melanoma education for melanoma patients. we will keep breathing. we will be brave.

good news from oregon, they have passed a bill making it illegal for minors to use tanning beds. so awesome, i love that. too bad every single state doesn't do the same, right? right.  with melanoma monday, there have been a ton of stats shared about melanoma this week. here are three: one blistering sunburn in childhood or adolescence more than doubles a person's chances of developing melanoma later in life. every hour of every day, someone will die of melanoma. every hour of every day. that is a tough one. in the US you have a 1 in 50 chance of getting melanoma.

sunday is going to be a special day. mother's day. like all holidays, it will have its tough moments. but i am going to brave and do my very best to enjoy each moment of the day, and to not think about the unknowns of what future mother's days may hold for us. that is the goal, wish me luck. i want a lifetime of mother's days, and i deserve them dammit. every mom does.

here are some things that i have seen related to mom's day that i thought i would pass along...
+++ you know that any video called life doesn't come with a manual, it comes with a mother is going to be good
+++ i loved, loved, loved this post called a love list, what your mama really wants for mothers day. i am so going to adopt the love list idea.
+++ tears fell when reading on being a motherless mother, i know that there will be more coming when i read through her book the rules of inheritance that i told i am reading
+++ i laughed my you-know-what off reading what i really f*ing want for mother's day (thanks jill for posting, so funny)
+++ i have heard good things about momma love on some blogs that i follow
+++ pretty sure that every mom i know would love her kids picture taken in front of one of these chalktastic backgrounds. i am seriously thinking that i need to get the "love you" one to get some pictures of malena. yep, pretty sure that will be ordered this week. happy early mom's day to me:)

chase had a great day today!!! he continues to send signs out to family who are seeing captain america in random places (hi sheri!). today barrett's cousin posted that her little boy got a captain america sticker when he was at the eye doctor. just as i finished reading her post, i got up from a table and walked outside of the restaurant i was in. the very first person i saw was a guy wearing a captain america shirt. seriously, what are the chances of that? that must have been right around the time chase was kicking it into high gear in minnesota;)

here are the latest updates on chase:
+++ It has been a boyz only night here in Chasers room. He has maintained a calm state the entire time. He showed the guys the healing garden, and gave them a tour of his crib. We hung outside for about an hour, and as the sun dropped down, the temp dropped with it. Chaser seem to enjoy the fresh air, but as it chilled, he got goose bumps on his arms, and his air hair rose. I don't know if this means anything, but it was the first time I had seen this reaction since the accident. With the visitors , came a little chuck of home. Drew brought up some grinders from the Red Pepper in Grand Forks- mmmm. Chaser went off for a tubby at his regular time, and we decided to hit the Healing garden and show off our mad skills at basketball. Not only did we all realize how bad we are basketball, but we managed to get escorted out by security because it was closed.. Opps.... When we returned to the room, Chase had just gotten out of the tubby and the nurses were trying to put his meds thru his J-Tube. Unfortunately, it somehow got clogged. We have put a couple things down to try and dissolve the meds or feed that has clogged it. Hopefully this third time is a charm. We will find out in an hour. If not, we will have to go down to the X-Ray room in Regions first thing in the am and insert a new tube. Fortunately he has an IV already installed for the PH meds, so we are able to get most of the needed meds in him tonight. I am hoping my little fighter learns to consistently swallow and eat on his own, eliminating this J-Tube issue completely. It may seem like a stretch, but i am confident it is going to happen. He still rests peacefully, as we plan to stay up and talk about old times and enjoy his peaceful state. Heres to a good night for all! God IS Good!
+++ Wow! What a difference! I walked into Chasers room with him laying on the bed taking a rester. There were two Nurses standing over his bed, Except this time, instead of waiting to hit the silence on the alarm button, because his heart rate was racing, they were peering over him smiling. He didn't have two pillows supporting his twisted little back up. His neck wasn't turned to the side, his left arm was curled up, and his face.......there is no snarl, no look of discomfort- I picked up his leg, and couldn't belive that it came right up with my arm with little or no effort. His tone right now is amazing! Chase has had a GREAT day! Mom was crying when she left- but not because she was sad, but she didn't want to leave yet, it had been such a good day. Chaser opened his mouth on his own last night and showed mom his tongue for the first time since the accident. Up until today, he has clenched his teeth so hard, that we couldn't even pry them open to brush his tongue. Well, today, he opened his mouth and allowed his teeth and his tongue to get brushed. And in PT/OT he actually ate with a spoon!! Yes, they fed him chocolate pudding and yogurt with a baby spoon- and he swallowed! It was just a little bit, but hey, it is still exciting. Mom said he did have a little storm today, but his muscle tone, and over all mood was really good. The Meds that he was put on to raise his PH have worked, and it is now where it should be. And judging by the way his day went, his tummy feels better. It shoulds like they still want to scope down in his stomach to see how bad the ulcer is, but that will be next week. I am looking forward to a good night of hanging out with Chaser and a few of my boys that are going to come up and visit. Enjoy your Friday evening!

i hope that you all have a great weekend, make the most of it and wear your sunscreen. i am being brave this weekend, so you can put on your sunscreen. we will call it even. xoxo

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