chaser + heroes + helpers

one of the last times that we were at gymnastics for malena, there was a huge captain america balloon in the lobby. no clue why, i didn't ask, it didn't matter. i just took it as a sign from chase that he was having a good day and was fighting hard in minnesota.

i usually write a note to chase each night on his caringbridge journal when i get done writing my blog update. he is always on my mind, but even more so after i finish a blog post since i typically share the latest update on how he is doing. last night i told him in my note that i would look when i walked into gymnastics to see if the balloon was still there.

when we walked in, i could see immediately that the balloon was gone. i was kind of bummed because i love seeing captain america things (and kind of go out of my way to look for them now) because i think it brings good mojo for chase. after i walked in, i saw a huge stack of these drawings on the front desk.

i know he doesn't have the captain america symbol on his chest, but i am pretty sure that this little superhero drawing was another sign that chase is fighting hard in minnesota. again, why they would have a ton of copies of this handout in the lobby of gymnastics is totally random. i have never seen them before. like the balloon, no clue why, i didn't ask, it didn't matter.

i got some fun mail today, "wisdom from the world according to mister rogers" from a new friend named dane. when i opened it up, i picked a page in the middle of the book and it had this quote on it...

"when i was very young, most of my childhood heroes wore capes, flew through the air, or picked up buildings with one arm. they were spectacular and got a lot of attention. but as i grew, my heroes changed, so that now i can honestly say that anyone who does anything to help a child is a hero to me."

i also think that turning to that exact page in the book was a bit of a sign as well. so tonight i have heroes heavy on my brain. chase is without a doubt a hero to me, and i know that he will keep fighting. i also know that he has had a tremendous support group from all over sending him good vibes and prayers, and doing what they can to help in any way possible. they too are heroes, including all of you that have signed up for the fun mail for chase, ava, and tanner campaign (we are into week three - and we now have enough people signed up to send mail to the kids every single week of this year!!!! so awesome). everyone who has helped chase and his family makes me think of another one of my favorite mr. rogers quotes,

"when i was a boy and i would see scary things in the news, my mother would say to me, 'look for the helpers. you will always find people who are helping'. to this day, especially in times of "disaster", i remember my mother's words, and i am always comforted by realizing that there are still so many helpers - so many caring people in the world."

i have had a pretty rough time sleeping in the last couple of weeks, i think due my brain overloading on all of the things that i want to do and accomplish in the next three months before my next scans roll around (ugh). so i have felt like i am dragging during the days because my brain won't shut down until way past the time it should in order to give me some good rest each night.  but i think that tonight i will rest a little easier thinking about heroes and helpers, and that chase sent us a sign today that he is continuing to fight his fight.

here is the latest update on chase:
"Chaser lays peacefully on his tummy. The left side of his little chapped face resting on the bedsheet, while his neck bends softly, stretched across the end of the pillow. His twisted little feet are perched up on another pillow, with most of his toes comfortably curled in, the others pointing up to the ceiling. His heartrate has calmed down to that of an adult engaging in a strenuous activity- but now seems to be his level while at a state of rest. I have been trying since 6 oclock to find time to write this journal, but unfortuantely, in one way or another, have been focused on finding comfort for Chase, and getting him to a point of relaxation. Chasers evening last night was a prettty active one for him and mom. He remained tense for most of the night, and had a storm around 1am. He awoke to another, more intense N-storm around 6. The nurses had to resort to using all of the methods prescribed to counter it. Usually these storms are calmed during the first counter active med they give him, but not this time. His day at Therapy was not very productive, as he remained agitated with his muscles clenched, and heart rate fairly high most of the day. He did manage to bring some smiles, as he reacted positively to the smell of lemon and orange today- and squeezed in a couple of swallows! Chasers personal stylist, Cari, made a house call to the hospital room and trimmed up his hair to get that little boy look back. :) We met with the various members of the staff today, for our bi-weekly interactive meeting. We had some very good discussions on his condition, progress, and ideas to further his progress. The Therapists did agree with mom and I, that he seems to be responding to voices, and moving his eyes in the direction of them. Although, it is not as often as we would like, nor does there seem to be any consistency, they can "feel" him as well we do! The staff seems very receptive to our input, and all of them, have grown an attachment to Chase, and no doubt, have nothing but his best intentions in mind- That was reassuring to see and hear! I suggested that we try pool therapy, since he is such a fan of tubby time. They are going to try a couple and see how it goes. The overall concensus of the meeting, was his tight muscle tone. It is very clear that this is the number one obstical we are facing right now. I am praying we figure this out, and soon. Mom and I both feel that a large cause of his tight tone is the ulser. He is moaning much more, and although it is nice to hear his voice, this is not a pleasent noise to hear. His face seems to be in a constant aganizing snare, wihich reinforces our theory that he is in pain. With the med patch now off of him, we have increased one of the muscle relaxing drugs to try avoid the storms. We have added a couple of stomach meds to his cocktail to combat the ulser. I have made it a point to try and keep my journals centered around the positives, but some days, it just is what it is. Mom and I are still very pleased with the progress Chase has made, and continues to make- but for now, it appears that our primary focus, once again, needs to be on eliminating the pain our little guy is dealing with, so he can be more interactive in therapy. With this day almost behind us, we look forward to a fresh start tomorrow, and more positive signs. Have a good night. God is Good!"

goodnight, and sweet dreams - especially to chase, may he rest well tonight. xo

melanoma mounday wraps up

thanks so much to all of you for your support on melanoma monday. for wearing black. for getting the message out. for showing your support in various ways. i felt the love and support all day long and i really appreciated it. i think that there are more people today that know about melanoma than yesterday. mission accomplished. xo.

melanoma monday

before we get into melanoma monday, let's start with some fun stuff.

our weekend rocked. i was pretty much in love with this weekend and am super sad it is coming to an end. malena wanted to have one more campout night tonight, and i was tempted to say let's do it and we can all take the day off tomorrow. but one night leads to another and then pretty soon we would be camping out every night and ditching school and work. hmmmm, that does sound pretty good after all. maybe i need to reconsider my answer;)

on friday, barrett and i headed over to alderbrook, our favorite spot. we decided we would take a night to get out of town and celebrate the good scan news. it could not have been a more beautiful night. loved it. gorgeous drive down hood canal, awesome dinner. perfect friday night.

saturday morning barrett golfed with my dad, so i had a quiet solo breakfast by the water getting my fill of green tea and one of my favorite magazines (jill - this one is coming your way soon my friend;)). i followed that up with a 90 minute relaxation massage that made me so relaxed i was like a walking pile of jello.

 

as we always do, we took a skipping stone down to the water, made our wish, and skipped it out into the canal. i have a lot of wishes that have gone into that canal, so it brings me a lot of comfort to be there.

later on saturday i got to catch my up college girlfriends for an impromptu meet up since our superstar friend jen was in town from cali. love me some good girl time.

today was zoo day. it was a gorgeous blue sky day and the perfect day to roam around checking out all of the animals. but first we started the day off with breakfast at one of our favorite spots, and malena had her usual minnie mouse pancake;)

malena took her own pictures at the zoo, she is our little photographer who clearly gets her camera skills from her aunt denise. i love watching her take pictures, she is so focused on what she is doing and getting the exact shot that she wants.

she was also our leader carrying the map and telling us which way we should go. clearly, we all know that she gets her awesome directional skills from her mom.

we had three trips on the carousel, i don't think that we have ever been on a carousel that we haven't paid to go on at least three times. that girl loves her carousel rides.

our friend kadeena kicked it with us today and got this picture of the three of us, i think that it is one of my all time favorite pictures of the three of us. love it.

i was super hungry after the zoo and so i made my new favorite lunch. kale, cucumbers, radishes, mushrooms, hemp seeds, chia seeds, pumpkin seeds, goji berries, pine nuts, and some nutrional yeast on the top. a little guacamole on the side with some crackers. so good. every time. yum.

so the weekend comes to an end, but i am so thankful for it. it was a great one that left us with a ton of new memories. i also got caught up on our picture album for this year. i am so loving keeping current with our pictures every week, so happy i got myself to the point of following through on that promise to myself. so, so worth it.

monday is melanoma awareness day. i have seen a ton of updates on the latest statistics, stories shared of melanoma warriors, stories that are heartbreaking, terrifying, full of hope, sometimes all three combined into one story. i thought a lot about what i would write on the blog tonight on the eve of the day dedicated to melanoma. i have gone back and forth a lot on what i would post, what sites i would link to, what statistics i would focus on, etc.

but at the end of the day, i decided that my story is the best one i can share on this day focused on melanoma. i have shared my story in the 311 posts on this blog. i have shared it with all of you who read my posts via email, or your rss feed, or have been one of the 43,833 clicks on my blog since the day i started writing. i have shared it in the truths i have told you about what it is like to live with melanoma. i have shared it by telling you how scared i am, how sad i am, how guilty i am, how hopeful i am, how i wish that i could do anything to make it all go away. i have shared the physical pain, the emotional pain, and the scars that are too numerous to count. i have shared that key decisions in my life have been taken away from me, like getting to be pregnant for a second time. i have shared the countless tears that i have shed.

but on this day, i feel like it is time to share some things that i haven't shared before.

this is the very first picture i took of myself after the surgery to remove my original melanoma. it was excruciating to take this picture, i have no clue how i got that smile on my face. i knew i would never again take a picture of myself, or have a picture taken of me, that i would not see the scars around my neck reminding me every single day of the hell of living with melanoma. every single picture.

this is the first day that i started interferon treatment. i could not believe that i was at a cancer facility. i was the one hooked up to a machine dripping meds into an iv in my arm for hours. i was a cancer patient. this was my life, not anyone else's. i was in for the fight of my life and felt like i hadn't even had a chance to catch my breath since my diagnosis.

 



i did not realize when i started treatment that i would have the iv port in my arm for basically the entire month. that first day, when they left the port in and wrapped up my arm to send me home, you could have knocked me over. i walked around with a bandage around that port for the first month. you should see the looks on people's faces when you are out and about and they see that you have bandages around a port on your arm. most of the time it is a look of "i'm so sorry" followed by "i am so glad i am not you." i have gotten pretty use to that look now, it comes almost every time i have to tell someone i have melanoma.

this is what a biopsy on my arm looks like as it starts to bruise. the bruising gets a lot worse after this. you can probably tell, it hurts like hell.

this is what i looked like on interferon, a typical day when i felt like absolute hell. which was pretty much every single day. this picture was taken when i had lost almost all of my hair except some on the top of my head.

this is what my stitches looked like when i got the biopsy on my left arm. it also hurt like hell. this is the scar on my arm that i get to see in every single picture that shows my left arm. every single picture.

my story. i never thought this would be my story. i sometimes wonder why it has to be my story. but here is the thing, it shouldn't be anyone's story. there is no reason that it shouldn't be my story. i have been blessed with a great life. i have an amazing immediate and extended family, the best you could ask for. i am a mom to the most beautiful little girl i could have ever dreamed of who fills my days with laughter and more love that i could have ever imagined. i married the man who makes me laugh every day, and with whom i have a better life than i ever thought possible when i thought about finding the perfect one for me. i have a great job that i absolutely love, even on the toughest days. i have the best friends a girl could ever ask for. i have a lucky, lucky life - and we all know that bad things happen to good people. it happens all of the time. there is no reason why i should be an exception. don't we all want to be the cancer exception? but not everyone is, and fate deals the cards how it sees fit. i don't like the deal i got. 

so on monday i will wear black. i will wear it for those who have finished their fights. i will wear it for those that are still fighting.

i am still fighting. i plan to do it as long as it takes to kick melanoma's ass.

wear your sunscreen. make sure that you kids wear sunscreen. stay out of tanning beds. go to the dermatologist on a regular basis, go right away if you notice something changes on your skin. please. i am not fighting this fight for you to go through the same things that i have. i am going fighting this fight so that you don't have to. 

don't let me down. xoxo

hello weekend

"don't look back, you aren't going that way"

(author unknown)

 

 

i saw that quote on wednesday morning, perfect timing to come across it the morning after my scan results. it was like it was meant to find its way to me. i thought about it on wednesday when we had some park time. malena climbed up way farther than she had ever before on a rope climb. she kept asking me for help on how to keep climbing, and i told her to just look up and take it a step at a time. don't look back towards the ground. focus on where you are heading, not where you have been. it worked, she got to the top. great advice for us to both follow.

 

 

 

on wednesday night, i read this blog post called "you are awesome" by nici holt-cline. i loved her words "I started running again. Or, I started running for the first time. I ran to feel good, to inhale, to move over mountains, to clear my head, to feel connected. I was strong. I was brave. With every step, I shoved my eating disorder into the earth. I ran and ran until my former self was a tiny, waving flag on a distant summit. And then I stopped turning around to wave back. And then I started only looking ahead." i felt like she was conveying my feeling with the scan results, stop turning around to wave back and start looking only ahead.

so onward we go.

chase is also going onward, here are the latest updates on our warrior
+++ lisa called this one "tmi" for too much information;) "Chase had an alright night....he didn't fall asleep until 1:00 am. That is way past mama's bedtime. That didn't last long. He was in and out through out the night. So needless to say not a good night sleep for anyone. His main problem was gas and the number 2. TMI...I know..but 4 bowel movements. This has been a consistent problem for a couple of days now. We have decided to give him some help. Not to actually go but to get him on a regular basis or some kind of schedule. He will be getting an enema right away in the morning to help regulate him. Hopefully that will work cause he is known for the room clearer lately. Like the saying goes "like father like son" (sorry honey).You put me in charge of a post and you never know what you are going to get! Chase has had a busy morning. RT, OT, PT and speech. Today in speech we decided to take away the vital stem treat. Chase has not been liking that lately. Not so much pain but discomfort. The therapist said he swallowed 50% more without the vital stem treatment on. So we are taking a break from that. Was so proud of him. His favorite this am was chocolate pudding. His cousin Drew must have prayed for him last night, the pudding was a hit. We have a break now and then off to more therapy this afternoon......."
+++ "Another Storm free day! Chasers day finished much better than it started. He had pretty uneventful afternoon with mom in therapy, but he did manage do the "criss-cross apple-sauce" in PT with both of his legs today- where as prior, he was only able to flex one of the legs in that position. He maintained a pretty drowsy mood all afternoon. When I arrived to the hospital after work, I walked into a snore fest, with mom sprawled out on the couch sawing logs, and Chase spread eagle on the bed- fast asleep. Thats what happens when mom lets the kids stay up late on a school night- they are tired the next day...huh- funny how that works..... Well dads hanging with him tonight, and he fell asleep at 8:45, just like he should :) He had some visitors today, which was great. A couple of them came after I arrived, and I was excited to see them -it has been too long since we laughed together. I gave him another 25 mins of FUN-therapy in the skyway. During this one, we listen to his favorite song from FUN and move his arms and legs around. He did very well. Before I started, his arms and legs were tense and his heart rate was high. After a couple of mins, he loosened up, heart rate dropped considerably, and he was even able to get his arms high enough to "raise the roof". As slow as he moved, I think he still looked better than I do on the dance floor! After our therapy session, we made a few laps back and forth on the skyway (all 68 paces of it) to feel the fresh air. When we got back to the room, we were greeted by his nurse with his nightly cocktail of meds, then to the tubby room, vest treatment.....and off to snoozeville. Although he didn't seem to do that much today, just as everyday that precedes it, I honestly believe that he is progressing. His eyes moved towards the sound of my voice a couple times today, especially during our brief time alone on the skyway. It was pretty exciting as his big brown glazed stare was aimed right at me- or at least in my direction! We are looking forward to a good day tomorrow, and just to be sure it starts off on the right foot- Dad is going bring up some bacon from the Cafeteria before I head to work. Sleep tight..... God IS Good!"

i hope that you all have a great weekend. the weather around here is supposed to be full of sunshine and blue sky, nice for a change - i will not miss the rain. at all. our weekend is going to include barrett and i taking a quick overnight trip to our favorite place to celebrate scan results + massage (yes!!!) + golf + qt with some of my favorite ladies + some cinco de mayo celebrating + start of new swim lessons for malena + a trip to the zoo. lots of fun ahead, can't wait. enjoy yours, this is the only time you will have this one weekend to enjoy. make the most of it. xoxo





renewing...

"consult not your fears, but your hopes and your dreams."

(pope john xxiii)

 

 

i can't tell you how good today felt.

 

it was like the biggest weight had been removed off of my shoulders. i knew that the last couple of months had been rough, and the scans and results loomed large. i had no idea how much weight i felt like i was under until he told us that the scans came back clean. i feel almost as if i was floating today compared to how i have felt since the blow that came with the stage iv diagnosis. i could get use to this feeling;)

 

these scans did show some enlarged lymph nodes in my chest area, but they showed up on the last scan as well. although they are on the larger side, and they changed shape a bit from the last scans in january, they are still within the normal range for lymph nodes so we are not worried now. we will continue to watch them in my next scans (end of july). because they are in my chest, if they became a problem, surgery would be an unlikely (but not counted out) option and we would more than likely have to implement treatment at that point. but we all know that isn't going to happen, right? right. so moving on....

 

in my post yesterday, i talked about one of the things that i am going to do is renew some of my magazine subscriptions. i have had some subscriptions that came due in february after i got the stage iv diagnosis. i could not get myself to renew those. my mind would play games with me about these scans not coming back clean, and if that was the case, i a) would have a lot of other things to do other than read my favorite magazines, and b) why would i order something that i wouldn't be able to totally use? i know, not happy thoughts - but you know what, they are part of the reality of what i mentally go through and it isn't all happy. but it is all real, and it is all tough. tougher than you can imagine. the agony that went into what would be a five minute process on my computer was just too much. renewing those subscriptions felt like i was tempting fate to call my bluff, like i was being too cocky to think that things would be fine and i was just asking cancer to punish me for it.

 

as you know from reading this blog, i try my best to be positive and i think that i do a damn good job at being brave and fighting hard. but i also write this blog to be honest and to share what it is like for me to live with cancer. i feel like giving you all glimpses into how little decisions can be so hard provides you with a view in you might not otherwise have. it may help you to consider some of the realities other friends/family with cancer may go through, that you would have not otherwise ever known. at least that is my hope by sharing so many aspects of my story. so look out "where women create" and "mamaloade", you are going to see some renewals coming in from me and i can't wait to start reading;)

 

may is skin cancer awareness month. monday, may 6th is melanoma monday and it is the one day specifically focused on melanoma awareness. since melanoma is known as the "black beast", black is the color of the ribbon that indicates melanona awareness. on monday, i hope that you will join me and wear black to honor all of the melanoma warriors that have already finished their fight and all of those still in the midst of their fight. thank you in advance.

 

chaser had a good day today, super happy about that. i figured he was due for a good day today since yesterday was a bit tough. also, i wanted to share that we have now got enough peeps signed up for the "fun mail for chase, ava, and tanner campaign" that the kids will get mail every week of this entire year!!!!! how awesome is that? yep, pretty awesome. you all seriously rock (but i totally already knew that).

 

here is the latest on our little warrior:

 

+++ Good morning. It may be crummy out, but maybe the kids and I can build another Chilly in the yard again tonight if enough of the white stuff comes down :) Chaser had a great night with Gramma Judy. He fell asleep right after mom left, woke up for a couple hours in middle of night, then drifted off into dream world until a small storm woke him up this morning. The J-Tube continunes to keep us on our toes, with today being no acception. Chaser brought up some feed this morning, which more than likely means the tube has moved into his stomache. We are waiting to hear when he can go down to Regions IR to X-Ray, and reposition if need be. We are still considering the more permanent version of this feeding tube- I just have a problem with him going under general anesthsia for the initial operation, and any problems that occur in the future, will require the same procedure. I spoke with the doctor this morning, and they are going to remove the casts that were placed on his feet yesterday- not because of discomfort, but because there is some moisture build up that may cause more harm than good. Hopefully his custom ordered braces will arrive soon. He has a full day of Therapy that will go on as schedualed. Gramma says he is doing GREAT this morning, seems well rested and in a good mood- Heres to another good day of Therapy! - Thank all of you for the prayers sent up for Lisa's cousin Alli- her scans came back cancer free!! Have a good day everyone......

 

+++ Just had to drop a note with the good news. Chasers tube was fine, the X-Ray showed it right where it was placed. We are not sure why he spit up feed. The Nurse has turned down the feed level, thinking maybe it was building up down there. I stopped in to have a quick lunch with Gramma and to see Chase. He was just getting done with Therapy and was very tired. Before I left, I put my face next to his, he rolled his eyes over to me and looked me right in the eyes. He gave me a look that made it all ok- then he drifted off to sleep. He is resting now, with a couple therapy sessions to go......going to be a great day!

 

+++ Chase had a great night! He was surrounded by laughter all night. He took us on tour of some of his favorite places at the hospital. We got to see his PT rooms, the outside garden area, and some of the halls he rolls through during his daily routines. He was very relaxed but alert all night. You can see the differences in Chase from visit to visit. His eyes are so different from the early days after the accident. They have a sparkle to them that was not there for a few weeks which gives me so much hope. He continues to use his expressions to communicate how he is feeling. His eyebrows are very expressive, as well as the sighs he lets out. He looks great, better every single time I'm here. I can't even imagine where he will be in a month, or two months. This little guy has so much in him yet. He is going to give this journey all he's got. Tomorrow his schedule is packed with therapy from morning on. More work, more progress. Go get 'em Chaser!

 

happy thursday peeps, our weekend is almost here. looks like it is going to be a gorgeous one here this weekend, loving that.

 

sidenotes:

+++ for obvious reasons, i loved this article called coming back from stage 4 melanoma (thanks mary for sharing:))

+++ for all the moms out there, if you need to drop some hints on a gift, you may want to check out these coupon books ;)

+++ this video, the most valuable photo mom captures, was so worth the ten minutes it took to watch it. a great reminder to get in the pictures with your kids. i am trying to do that now more than ever. 

 



amazingly huge sigh of relief

wow.

i am still in shock.

clear scans. i literally still can't believe it. a dream that feels too good to come true. we were due for good news, i just wasn't convinced it would ever actually come.

i feel like i got my life back. amazing how three months can seem like forever when you have scans dictating your ability to know how life will look in three short months.

here is what i know about the next three months:

i am going to take malena to disneyland.

i am going to go a retreat in june.

i am going to watch my nephew graduate college.

i am going to turn 38.

i am going to get as many pictures as possible into albums.

i am going to a sheehan family reunion.

i am going to pullman to visit my sister, neice, and nephew.

i am going to write love letters.

i am going to read books while sitting on my dream couch.

i am going to spend time with family.

i am going to hang out with my friends.

i am going to drink more green smoothies that you can imagine.

i am going to make cards.

i am going to eat a gazillion fruits and vegetables.

i am going to keep getting my immune system in tip top fighting shape.

i am going to continue to say i love you's more often than ever before.

i am going to give a lot of hugs.

i am going to take a zillion pictures, of the big and small moments.

i am going to renew some magazine subscriptions that i couldn't bring myself to renew because of the uncertainty of my future.

i am going to continue to fight.

i am going to embrace every single second of the next three months.

i am going to cheer on chase in his fight, as i well know, some days fighters don't have good days. but like i know today, fighters have good days and i know that chase has a lot more good days to come. here is the update on him today:

+++ "Sorry for the late post, been a busy day. Today was not one of Chasers better days. He was seemed tired and aggitated all day. Last night he had a couple of storms that kept him from getting much sleep. He woke up at 5am and didnt really get much rest time through out the day. He started his therapy with OT and PT. I got to hold him on my lap while the therapist stretched and massaged Chases limbs. He also got some tummy time today where he would practice holding and pulling his head up. He did very well. In speech Chase had one of his firsts. A pickle. I dont think he had ever had a pickle before. He wasnt impressed. Lots of funny and strange expressions. Next was yogurt. He had several swallows and seemed to enjoy it while she swished it around in his mouth. After therapy he got to relax all of 30 minutes until it was time for his vest treatment. Not even that calmed him down. At to top it off, the doctor put his feet and part or his legs in hard casts. These were put on to flex his ankles and feet to loosen his tone. With his muscles so tense since the accident, the have formed his feet to a very uncomfortable postion. He doesnt appear to dislike them yet, but im sure they arent very comfortable....But with Chaser, who knows- when Ava broke her arm last year, Chase had dad make him a cast out of duct tape...so maybe he will like them! they gave him Captain America colors. :). once again, we left him in good hands with Gramma Judy tonight. We came home and hung out with the neighbors outside, and caught up on some missed bonding. Even warriors have off days....looking forward to a great day tomorrow. GOd is good!"

thanks for all of the good thoughts and prayers and mojo, you all rock.

anywhere i go, you go. thanks for coming with me today. xoxo

the scans were clear!!!!!!!!!

more soon --- thanks for all of the good thoughts and prayers!!!!!