Friday, April 19, 2013

meant to be

back in march after surgery, i heard about a retreat with some artists i admire on the oregon coast that i have really wanted to go to for a couple of years. but i heard about it a few hours too late and by the time that i saw the announcement registration for the 24 spots was already full. so i signed up for the waiting list. remember how lucky i am when it comes to being on waiting lists? but i figured that there was no way i would be lucky enough for lightning would strike twice.

so on tuesday of this week i got an email that someone had cancelled their spot and i was next on the waiting list. i was so excited! but the retreat is in june, which is past my scans in april, and so commiting to that plan was going to be tough. i had to let her know by wednesday. after a lot of thought related to a couple of different considerations, i decided that i wouldn't take the spot.

after i sent the email declining the spot, i realized almost immediately that i had made the wrong decision. my gut told me that i was meant to be there and not taking the spot was a big mistake. but within a short amount of time my spot had already been offered to someone else. so i asked if on the off chance the other person didn't take the spot if i could have a second shot at it. i got notification this morning that the other person didn't take my spot, so i am going. deep breath. another plan made for after scan results. being brave.

i saw a quote from another melanoma patient recently that essentially said living with melanoma is like buying a two year calendar and not knowing if you will get to entirely use it. i totally agree, that is exactly what it feels like.

so here is hoping that june finds me on the oregon coast getting inspired at an awesome retreat.

just like portland, i believe it is meant to be.

now i just need melanoma to feel the same way.

i hope that you all have a great weekend, ours has already kicked off with our latest kiwi crate and malena made her own paper (momma, this is so fun!) + campout night and s'mores + sleeping in + lunch and shopping with girlfriends + soccer + swimming + organizing all of the weeks of fun mail for chase, ava, and tanner + getting bracelets ready to send out + catching up on our picture album from the last two weeks + chopping/slicing/dicing vegetables and making green smoothies + lots of relaxing.

here is the latest update on our little fighter chase - and here is hoping that the weekend brings him some good progress.

"It looks like the storms have cleared the metro area, and they seem to have subsided here at Gillett's as well. Chaser seems to be struggling a little to adjust to his new temporary home. He welcomed the nurses here with a full diaper during the transfer, and has continued to make them get their hands dirty throughout the day. We are still trying to find the right mixture of meds to optimize his vitals, tone, and prevent the N-Storms. For the first 24hrs here, his hear rate was mysteriously dropping to an uncomfortably low level, but changing one of the meds seems to have stopped that. He has been struggling with the N-Storms throughout his stay. They have been more frequent in the last 24hrs, then they have been in the last week. We have decided to alter the treatment of them a little, and switched the reaction meds to some that do not make him as drowsy. While these do keep him more alert after they they take affect, they seem to take much longer to treat the N-Storm allowing them to continue longer than any of us would like. Unfortunately when dealing with the human body, and especially a younger little dude like Chaser, there is no exact formula that works the same for everyone. We are going to have to try a few new things, observe, and make adjustments where necessary. His first day of Therapy went well. Aside from the first session to fit his hands with plastic braces to keep his fingers and hands flexible from lack of use. Five minutes into the session he managed to fill his diaper and make a mess of everything around him. He then went into a N-Storm that lasted almost 50 mins. Luckily dad packed an extra Sioux shirt to change him into for his Speech therapy that followed. During Speech Therapy, he actually swallowed 4 times, the therapist explained it wasn't a full swallow, but definitely something we can work with- it had to be the blue sucker that he got to taste that triggered it. Tanner and Ava spent the entire afternoon here with us. They really enjoyed the facility and all of the toys and games it has to offer. They pulled Chase around in the wagon proudly! All in All, it has been a good day. The staff is very friendly, knowledgable and eager to work with our Little fighter. Chaser is now resting after a long day, with over seven hours of being awake and alert. Rest on little man, we have plenty of work to do tomorrow. - I have had a couple calls and texts today wondering why we haven't posted. It has just been that busy here....which is good- the days go much faster, and the mind stays occupied. Rest assured, mom and I are keeping it positive, and still have total faith the Big Guy is working with us. Thank you all for your continued support. I can't tell you how many times it has picked me up off the ground and made me feel seven feet tall. God is Good!"

have a good weekend peeps, enjoy every single moment. xoxo

1 comment:

  1. So glad you went for it and got the spot at the retreat. It will be so good for your soul. I'm sure your April scans will be good and you can go with a happy heart.