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!!!!!

ugh + fight chaser fight

10:11pm and i feel like total hell. ugh.

i have felt like hell all night. i start feeling like hell before i have even finished drinking the first bottle of contrast, as my friend ellie says, "the second bottle is always the toughest." yep, i have to down two tall and big bottles of that stuff each time. by the time we are on the way home, i am officially miserable. ugh.

on the bright side, they found my vein for the bloodwork and iv on the first try. you know the rest of the drill. blah blah blah. ugh.

on the brightest side, these two kept me entertained and laughing. ellie caught us up on the latest internet viral tidbits, we shot the you-know-what about celebrities, and laughed at a hilarious book ellie brought me. after the scans, we ate chips, chocolate, cinnamon bears, and apples. it helps my tummy a little i think to eat some food before the big tidal wave of hell comes rolling in. ugh.

i am off to bed. not sure what the point is because i am pretty sure that i won't be getting a lot of sleep tonight.

thank you for all of the kind texts, email, fb messages, etc., you sent me today, i really appreciate it. thanks in advance for all of the good karma, prayers, and mojo that you are going to send to me tomorrow.

anywhere i go, you go.

let's hope we walk into an appointment at 4:30 where we get the news that those scans showed that there is no cancer.

let's hope. let's hope. let's hope.

speaking of hope, i want to share the updates on chaser from today as well. i love getting to know that he is continuing to fight as i fight as well - i think that he is my little kindred fighting buddy. keep sending him love and mojo:)

+++ "Chaser had a great night with Gramma Judy. They read stories, went for walks and just had some alone time. He woke up to a small storm but the nurses put him his wheels and Chase and Gramma went for a walk to calm him down. Seem to do the trick. He then preceeded to go to PT and Speech. Did very well. Really nothing new to report but it is Monday, Right??? We will have to care of that sometime this week. Had a break so Gramma and I took Chase to soak up some rays in the Healing Garden. So nice!!!! He then had another round of fully rescheduled appt. Overall so far so good."

+++ "Hello from Gillette's. Mom, jumped the gun when she reported there was nothing new to report. When in fact, Chaser made a couple big strides today. While sitting on a platform swing in moms lap during PT, he sporadically lifted his neck entirely by himself three times! Mom and the therapist were so excited they began cheering him on! With his calm, relaxed mood today, they were able to see that his range of motion, and flexibility are much better than we suspected. The rest of his therapy sessions went well, as the N-storms were nonexistent today. Once back at the his room, his day nurse for the last week and a half, entered and he responded to her voice by moving his eyes across the room to her. She even commented that he is showing signs that he is starting to track. If nothing else, Chaser is showing that he definitely recognizes voices, which is a big step in the right direction. As mom and I struggle with the thought of happiness making its way back to our life again in the future, these were some well needed signs of progress and encouragement! We pray they keep coming. Our little fighter has been fast asleep for the past 2hrs, regenerating his hard worked, fragile body. Mom and dad got to spend a little bonding time in the healing garden, where mom kicked dad's butt in a game of HORSE and Around the World. She sits here gloating, while only I know wether I gave it a 100% or not :) The night is still young, as Chaser has plenty left to do tonight. We are going to wake him up and take him for a stroll in his wheels, then off to a tubby, followed by a vest treatment- then hopefully a good nights rest. Hoping tomorrow is as good as today was- ........Again we want to thank you all for your endless support. Many have expressed that they wish there was something they could do to help out- we do have one suggestion. The Ronald McDonald house has been our saving grace for suppers and lunches here at the hospital. They are run on a completely volunteer basis. There are a lot of patients and families here that rely on these meals. This week there are 3 openings for suppers, and I'm sure there are more next. If any of you are interested, here is the phone # to contact and find out more details. 651-726-2820.. One more thing, when praying for Chase, please keep Lisa's cousin Alli in mind, she is waiting on her results to find out if she is cancer free. Have a great night!"

here we go again (for what seems like the millionth time)

“nobody will protect you from your suffering.  you can't cry it away or eat it away or starve it away or walk it away or punch it away or even therapy it away.  it's just there, and you have to survive it.  you have to endure it.  you have to live through it and love it and move on and be better for it and run as far as you can in the direction of your best and happiest dreams across the bridge that was built by your own desire to heal.” 

(cheryl strayed)

+++ the winner of the "kicking ass and taking names" contest was my brother;) so cool! i told him that all of the girls who had entered the contest would be super jealous of him:) thanks big brother for rooting on your little sis, i think that you kick ass.

+++ my mom and i packaged up all of the bracelets today, my dad is going to be a trooper and take them to the post office for me tomorrow (love you dad!). so if you wanted one, it will be on its way to you tomorrow. i still have more bracelets left, so if you want one let me know and i will send it your way.

+++ thanks for continuing to send good thoughts and prayers to chase, our little captain america. our fun mail campaign for ava, tanner, and chase will now continue into december as a couple more peeps have graciously signed up - i am hoping that we can get a few more to sign up so that we can send mail every week this year!! here are the latest updates from today:

 - "Chaser has had a busy morning once again. He finished the night off with pretty agitated storm- but once under control, he managed to get 5hrs or so of a good hard sleep. He woke up to another powerful storm about 6am, and began bringing up some of his feed- with isn't good. This made it pretty obvious that the J-Tube we had put back in on Friday, had moved and was now sending feed and meds into his stomach. We went down to X-Ray to confirm this, and sure enough, it looks like his he fought a little hard last night and moved it over with his stomach muscles. We got right into Regions 3rd floor X-Ray room, where the doctor installed J-Tube #3, and made sure it is where it needs to be. Chaser handled it like a champ. The 40mins it took, he managed to stay fairly calm, and keep his storming down to a minimum- which had to be tough, considering you are laying on a cold, hard bed, with someone digging in your tummy with cables and tubes. We are now back in the room, feeds and meds going down nicely- Chaser is spending a little more tummy time to calm him down. He has plenty of visitors on the way to see him, and we are looking forward to showing off our new little getaway- the nature garden. Heres to a good day! :)"
- "Chaser had a great afternoon with the outlaws. Although his N-storms were seemed to consume a good portion of the day, they were managable. We spent a few hours outside soaking up the fresh air and enjoying the nice weather with family and friends. Chaser continues to add "firsts" to his list . Today he added a new facial expression to the others that we have noticed, and his moans and groans seem to be becoming louder and more frequent. With his vitals stable, and storm under control, we left him tonight in good hands with Gramma Judy. we fired up the grill and hung out with the outlaws at home tonight . As the rain trickles down on the windows and washes the dry winter dust away, Chase sleeps peacefully next to Gramma, resting up for another monday filled with therapy. Sleep tight buddy....God is good!"

+++ well, here we go again. monday at 4:00 i get poked and proded for what seems like the millionth time. no eating for four hours before that. bloodwork. iv put in my arm (let's hope they find the vein the first time). saline injected into the iv, the awful taste in my mouth. drinking the contrast for an hour which always sucks in a big, big way. getting the contrast injected into my iv during the scans which also sucks in a big, big way. seeing those damn ceiling tiles that you know i hate. feeling like total crap after the scans are done. ugh, i dread all of it in a big, big way.

but on the bright side, i have barrett and ellie going with me. a tag team for entertainment. i have fun magazines so that ellie and i can check out the latest celebrity gossip. i bought straws this weekend, during my last round of scans pre-surgery, they gave me a straw for drinking the contrast and that made it easier to get down. so i am taking my own straws just in case they don't have any. i have my cinnamon bears ready to open after scans. i have a "be brave" shirt to wear that my in-laws made for me. i have my bracelet. i have all of the good mojo coming from all of you, what more could a girl need (except to not have the damn cancer in the first place, right?)?

so here i go, another round. i am literally dreading this, i think more than ever before. the stakes feel so much higher. because i know that cancer being back means the clock starts ticking, and that i will need a hell of a lot of luck to slow it down. but i know that the luck is out there, as i know stage iv melapeeps that are beating the odds as i type this (hi ladies!!).

as i head to bed tonight, i am going to focus on all of the things that i have done to try and get myself as prepared as possible. working less. more time with family and friends. eating more vegetables and fruit than i ever thought possible. juicing. vitamixing (i think that i just made that word up). giving up reisling. saying goodbye to candy. taking a million vitamins every single day. all new lotions and soap and shampoos and conditioners. drinking water like crazy. the list goes on and on. let's hope it all helped in some tangeable way.

thanks for all of the good vibes, thoughts, and energy you are sending me.

anywhere i go, you go.

bummed that the next two days we are going for scans and results (results are tuesday at 4:30).

regardless, i am glad you are coming with me.

i wouldn't want it any other way. xoxo
 

good news for patty;)

patty scans showed that her tumors have stayed stable which is great!!! she will keep taking chemo and will have another scan in june. i love good scan news, don't you? let's hope her good mojo carries over to me on monday/tuesday:) awesome news patty!!!! so happy for her and her family (hi kp, xoxo).

reminder, today is your last day to leave a comment to entered into the kicking ass and taking names  card giveaway! leave your comment by 5pm today and i will use the random wizard doodad to select the winner (if you are reading this via email, go to the blog to leave a comment). good luck!!!

happy friday peeps, we made it:) xo

mid-week rest + earthlings unite for patty

i have really come to love wednesdays. mid-week rest period with a day off from work. by the time wednesday rolls around, i am ready for it. i am sure just due to general anxiety, amped up now around scan time, i am wiped by tuesday night and so is a perfect recharge point.

today was a good day.

+++ sleeping in, malena and i both slept in late to catch up on sleep. i have always loved sleeping in, i have never loved it more than i do now on wednesdays. i took this one after she finally woke up and she came in to tell me she was up and ready for breakfast and cartoons.

+++ time at the park just having fun and laughing

+++ wednesdays have become a day that i seem to always need to get caught up with food that we need around the house, since we now go through fruits and vegetables like crazy around here. today when i walked in to whole foods i saw their entry had a new display, "earthlings unite" to support a charity. as i was walking out, i thought about that woman at the grocery store on monday who let me go ahead of her in line. i thought about how she would have loved that display since she believes good things come from earthlings uniting to be kind to each other. so as i walked out of the store, a gentleman was selling "real change" which is a local paper focused on homeless and low-income issues, and those whose sell it get to keep the profits to help them survive. they ask for $1 for the paper, i handed the man a $5. when i told him that i didn't need any change, his eyes lit up and he gave me one of the most sincere and heartfelt smiles and thank you i have ever received. a well deserved pay it forward moment. love those.

+++ awesome dinner. warm kale salad. sweet potato fries with chipotle sauce. salad with quinoa, cucumber, mango and avocado. all gluten free and vegan. so, so good.

+++ gluten free, dairy free, sugar free chocolate frozen yogurt to end the day. it doesn't get much better than that.

wednesdays, i heart you. big time.

also remember that you have until 5pm on friday to leave a comment on the blog (go over to the blog if you are reading this over email) to be entered into the kicking ass and taking names card giveaway.

today when malena and i walked into gymnastics class i saw a balloon with captain america on it at the front desk.

of course, my thoughts are never far from chase, and so i took it as a little sign from our fighter that he was keeping up the good fight today. keep sending him tons of good thoughts and prayers. here are the updates on his fight from today:

+++ "Chaser had a good night with Gramma Judy. He had a a mild Neuro-Storm in middle of the night, and woke up at 6am to another one, much stronger this time. The nurses did everything they could medically to try and halt it quickly, and eventually he calmed down. Chase seems to be reseting his baseline in the last couple days. His period of apparent calmness, seems to co-inside with a more elevated heartrate then from the previous 3 weeks, and his tone at rest, is much more tense. His heartrate has also been fluctuating from quite high to very low periodically, with no obvious reason as to why. We have come back to the room for a break between sessions, so I have been giving him a little of dads therapy- - Sun-in with a touch of bacon. We are parked near the window, with the sun hitting his face, and I have a packet of bacon bits we both like to smell. He was doing some lip choppin when i opened the bag and brushed it by his nose, not sure if thats the bacon, or the same reason he does it the other times without the bacon present. I am telling myself its the bacon :) He finally seems to be at a state of peace right now, and in 10 mins we are off to Psych Therapy. That was my minor in college- lets hope Chase does better than i did in class. It is going to be a good day. God is good!"

+++ Well, it turns out Chase is not as big of a fan of Psych as I am. Prior to the therapy session his J-Tube (this is the small tube, inside of the G-Tube used for feeds and meds) came almost completely out. So Chaser and I spent most of the morning going for walks with Gramma and Grampa Lykken to pass the time until we could go down to Radiology to have it re-inserted. Unfortunately, they were unsucessful, so we had to schedule a time that we could get next door to Regions Hospital for another effort, possibly surgery. With Regions unable give us a time they could fit us in, we went for more walks on the sky way- which has become our little Getta-away. It is a long walkway the extends from one side of the road to the other. As we walk across it, we can feel the breeze from the fresh air being pumped through the vents, completely lit by sunshine, we can peer out and watch the busy world that we seem so distant from right now. Love that skyway! .... Mom joined us for PT/ST where we made some adjustments to his wrist braces, and worked with Chase on some relaxing positions. At 3 O'clock, we had our first meeting with the Dr's and the various members of the Therapy team. It was a quick breifing and Q&A meeting- and we really did not discuss anything we haven't previously. When we got back to Chasers room, we found him asleep with Gramma and Grampa Lykken reading to him. At 5 o'clock we went down into one of the X-Ray rooms at Regions to fix the J-Tube situation. Fortunately they were able to insert a new J-Tube in the middle of his G-tube without surgery or many complications. Without any muscle relaxers, anti-storm meds, or feed in him since 6am, Chase got quite anxious on the cold X-Ray table and broke into a very strong and aggitated Neuro-storm. His heart raced higher than we had ever seen it, and his body was equally as stiff. With the J-Tube securly back where it should be, we were able to get Chaser the meds he needed to bring his heart rate down. We have spent the last 2hrs glued to the heart rate monitor, as his heart rate has continued to race, and at times, plummit to a very low level. This is all part of the balancing act we have been dealing with regarding his med cocktail every day. But once again, our little Warrior displayed his fight. Without any meds or feed for almost 12hrs, he maintained a calm state of alertness, with almost perfect vitals most of the day! That itself is pretty amazing! It was only when they started probing in his belly that he got really excited, and i don't blame him! He has just returned from a warm tubby, and finished his vest treatment. With vitals right were we want him, his clean little face pearing from the blanket- I am going to leave him with mom and go home and see the kids. To all a good night"

have a good thursday everyone, hope you get and take the chance to do something kind.

earthlings unite. we need prayers and good thought sent to patty today. she has scans and doc appointment to see if the chemotherapy has stabilized her tumors. please send good thoughts to her this morning as they have their appoinment at 10:30, so direct your good mojo to seattle this morning please. thank you;)

sidenotes:
+++ i am so going to make these almond butter pancakes this week, kind of drooling just thinking about them. i am pretty much in love with almond butter these days. ok, i will admit it - i am totally in love with almond butter these days.
+++ jaime and laura's story is one to be shared.
+++ there were so many things i could identify with in kelle hampton's blog today called "in the world of women", i loved every single word.

kicking ass and taking names (aka a card giveaway!!) + the rules of inheritance

"when i say be creative i don't mean you should all

go and become great painters and great poets.

i simply mean let your life be a painting, let your life be a poem."

(osho)

i was emailing with my friend emily last night about making cards, and how we both wish that we got a chance to make cards more often. (hi em!) i haven't got a chance to make as many cards lately as i would like to, i seriously need to get my card mojo back in a big way. so i decided it is time for another card giveaway, the perfect way to craft up some cards and get back in the game.

as i was thinking about it today, i knew exactly which stamp i would use on this round of giveaway cards. this one. i figured that it was a good one to focus on the week before scans. right? right. i figured that if cancer knew i had "kicking ass and taking names" on my mind  it will stay the hell away from me next week. let's all hope that i have figured this out correctly;)

so leave a comment on the blog by 5pm friday and you will be entered in the giveaway. i will use the number wizard doodad to pick the winner. you will get 5 of my handmade cards that somehow incorporate that awesome stamp. you will also get 5 envelopes that already have postage stamps on them so they will be ready for you to use right away. how cool is that? yes, very cool.

today i was talking with my friend ellie (hi ellie!) about a book that i have been totally curious about reading, the rules of inheritance by claire bidwell. i have heard awesome things about this book, and i can tell that she is pretty awesome by following her pics on instagram, reading her blog as well as all of the kind things others say about her. her parents both died from cancer when she was young, and for obvious reasons, i have thought that it might not be a good book for me to read now - or maybe ever. i felt like it might break my heart more than it already is. but after talking about it with ellie today, i decided that the brave thing to do would be to download the book and give it a try. if i can't handle it, i can't handle it. but maybe it will give me some peace, bring me some hope, or make me less fearful. i can only know that by trying. so i downloaded the book tonight, and took a couple of deep breaths while it was syncing to my kindle. i will start it tomorrow. wish me luck that it was a good decision.

chaser had a lot of therapy today and some positive points throughout the day, here are the updates from his day:
+++ "Great day here at Gillette's after the rocky road Chaser put mom and dad through last night, he had a smooth day filled with positive vibes. Chase showed his fighting spirit all day, starting with OT & PT. During these sessions he shared multiple facial expressions and continued to flex some of his swallowing muscles. In Speech therapy he filled the quiet room with lots of and moans and groans and to moms surprise, he belted out a loud sigh, that brought tears to her eyes. For a breif second, this nightmare became a familiar, happy moment. Chaser got to taste some chocolate pudding, and another lick of the blue dumdum sucker that turned his lips and mouth the same blue as it has in the past. Judging by his facial expressions, chase too may remember how good these suckers are. In another therapy session, Chaser was exposed to several different scents and spices- garic, oregano, lemon, strawberry........ Of all the scents, lemon brought the most obvious reaction- his nostrils flaired, he salivated, and he seemed to try and swallow! I am going to have to get the therapist to incorporate bacon into the mix that is sure to get him rev'd up! After therapy he went back to the radiology dept for another Chest X-ray-and to be honest, we are not sure why, but will find out tomorrow during our meeting with the doctors in the afternoon. To help aid in controlling his muscle tone, Chase was given botox injections in his calves. These will help a portion of the leg and feet muscle nerves from firing and soften his tone so we can put casts on his feet in a couple days. Mom joked about hanging out at the end of the bed incase the Dr slipped and accidentally shot some near her "crows-toes". The kids came up with Gramma Judy after school to visit, and mom and i took them home to have a night together in the house. As we were leaving, Gramma Dawn and Gramp Glenn made a surprise appearence at the hospital. Chaser is definately in good hands tonight. Chase and I will be tackling therapy together tomorrow, as mom gets a much needed day off. I am looking forward to seeing my little dudes fighting spirit, and pray i can witness a day as exciting as the one mom did today."
+++ "Good Morning, Chaser decided last night that he wanted get mom, dad and the nursing staff adrenaline going last night- we had 3 spells where his heart dropped way, way down, and we had to shake him to get him alert so that it would get back up again. It was obviously a negative reaction to one of the meds we gave him, and weither or not it was the med, or the dosage, i am hoping the Dr figures it out. Chaser has a full day of Therapy to day, and I pray he has a good one. I am off to work, and mom and Chases work starts at 9am. I hope you all have a good day."

happy wednesday peeps, we are halfway to friday.

sidenotes: (i have missed these, have you? will try to get back in the groove)
+++ i totally laughed when i read the quote on this free download for making bookmarks
+++ i am a big believer in people's stories, and that sharing them matters. will's story is one that deserves to be shared.
+++ how cute (and easy) are these button cookies? i know, so cute.
+++ if anyone is looking for a recipe for superfood candy cups, you should check out this recipe (thanks erin for sharing;))
+++ i thought this post "dear mom on the iphone, i get it" was so, so good. i don't think that i will look at moms (or other adults) on iphones when they around kids in the same way.

big day

today was a big day at our house.

malena is student of the week at her school this week. big deal:)

as part of that, she gets to take a poster with pictures and tell her class all about them.

we worked on the board yesterday, it was so fun to put it together with her. she wanted to stencil the letters on herself (i can just do this all by myself momma).

putting together the board for her made me think ahead to all of the projects that she will do in school, the art projects, the science fair projects, the social studies projects, etc. bittersweet moment for me for sure, but i just took it all in and was so happy to be in that specific moment with her. a milestone event for us. you know i love those.

 

we started today with a chocolate donut with sprinkles to celebrate her big week. what day doesn't start out great if you are eating a chocolate donut with sprinkles? exactly. they all do.

she got to put her picture board up at school in the main part of the school so that everyone sees it when they come in and leave school. very exciting for her;)

how did my little girl get to be so big? i wonder that every single day as i see the new things that she tackles and how she amazes me each day. i found this piece of art this weekend and knew the second i saw it that it belonged in her room. i want her to be reminded that she can and will move mountains, and on the days when she might not remember that for herself, she can know that her mom believes in her wholeheartedly.

keep sending your good thoughts and prayers to chase that his n-storms will start to slow down in frequency. here are the latest updates from today:
+++ "Chase has given me the best present ever, a full night sleep :) He had a great night with no interuption. Except for his vest treatment and of course his medications. He slept so good, as Chase was sleeping I laid there and watched him sleep peacefully. Like any mom you lay there and stare at your baby. Thoughts that went through my mind were: look at those eye lashes, I can't even imagine loving something more than children, is he going to wake up and ask for some propel, and how did this happen??? I don't know, all I know is, it did and we will get through this. The love, support, and prayers are undescribable. Overwhelming at times, but in a good way. Last nights prayer session was a eye opener. It made me dig down deep into my heart and really ask God for forgiveness and for strength. He will provide, I just know it!!! Chase is one demanding and stubborn child, with a kind and young heart. One day at a time and baby steps. Off to a full day of PT with only a 1/2 hour break at noon. Hopefully it goes well."

+++ "Chasers Neuro-Storms seem to be following the same pattern as this crummy MN winter- unpredictable, and never ending! I think Chase got his hero Captain America with GI Joe mixed up today- He and mom started the day bright and early at the crack of dawn, and he managed to stay awake until late afternoon. Although their night was very peaceful, and consisted of a good, much needed reenergizing rest, Chase proceeded to burn all of his built up energy fighting the Neuro-Storms most of the day. He had struggled through four therapy sessions while remaining in a tense and agitated state. He did show his show some his strength and took at least 6 swallows on his own! During his physical Therapy, he made one big swallow that excited his therapist because she could actually hear it happening! Mom and I had a good meeting with the neurologist and Dr. to discuss Chases current state and alter the plan of attack on these Neuro-Storms. We have always been confident that Gillett's hospital was one of the best of its kind in dealing with Rehab and therapy for a child in Chases condition, but now we are comfortable with the medical side as well. We have made some changes to his cocktail of meds, altered dosages, and added a med to dry up his secretions. He seems to be tolerating all of the changes well- The Dr reiterated to us again, that with many patients they are unable to find meds that are effective in treating, or even help calm these N-Storms- making Chase a good exception.. As frustrating as it has been to try and deal with, prevent and react appropriately to these storms, we feel fortunate that they are not as frequent and violent as they could be given his condition. Although the day had many ups and downs, we continue to be encouraged by the immediate and blatant answer to prayers that we are receiving. We both understand we are Gods schedule in this fight, and we are trying to be as patient as humanly possible. Chase continues to snore behind me as I try to put into words the days events. We thank you all for your continued support- and are looking forward to tomorrows bright reflection from the new blanket of snow outside to shine in our room with more hope."

today as i headed home i needed to make a quick stop at the grocery store (josh - just so you are clear, i had to stop at safeway's;) haha! love you). when i got into the checker line, i had a small basket full to the brim. the woman in front of me had a full cart, but all of the lines were busy so i picked one and was ready to wait my turn. she turned around and told me to go in front of her because i had less than she did. i said "are you sure? my basket is totally full?" and she said "you know, i think that if we all do nice things when we can we will collectively make this world a better place."

i couldn't agree more.

weekend, i am going to really (really) miss you + carry on, warrior

"be kind, for everyone you meet is fighting a hard battle."

(rev. john watson)

how is it already sunday night? i don't know either but it sucks. we had a great weekend so no complaints, minus the fact that it didn't last longer;)

a couple of updates:

+++ thanks to all of you that have got in touch with me about the fun mail campaign for chase, tanner and ava. you all rock! so far, we have enough people signed up to send the kids mail every week between now and then end of november! how awesome is that!! if you have been in touch with me to let me know that you wanted to sign up, you should have got an email or a fb message from me today with your assigned week and all of the info. if you didn't hear from me, i somehow dropped the ball on getting your name on the list so remind me:) if you haven't yet but want to sign up, please get in touch with me and i will give you all of the details. i am so excited to kick it off this week:)

+++ regarding the bracelets, i want to make sure that i have everyone covered who wants one. so, i am going to make sure that i don't drop the ball on this one either. if you told me that you want one, and you haven't got one yet, please confirm i have your name on this list: mary b-z, nan, michael, kadeena, kerry, ellie, kris, jen, jill, doreen & charlie, roberta, rheta, ann, kelli, megan, crystal, and tami. if you want one and your name isn't on the list, get in touch with me and i will get them sent out this week. thanks!!

i read carry on, warrior last weekend and it was awesome! one of the best books i have ever read. hands down. her writing will make you laugh, cry, find hope, believe that good can come from bad, etc. i didn't want to put it down. here are a few of my favorite parts...

"the more i opened my heart to the folks in my circles, the more convinced i became that life is equal parts brual and beautiful. and/both. life is brutiful. like stars in a dark sky. sharing life's brutiful is what makes us feel less alone and afraid. the truth can't be stuffed down with food or booze or exercise or work or cutting or shopping for long. hiding from the truth causes its own unique pain, and it's lonely pain. life is hard - not because we're doing it wrong, just because it's hard. it's okay to talk, write, paint, or cry about that. it helps.

this book is my story, and i hope it's yours too. it's about how i built my circles - how i built a life- and what is means to me to carry on."

"here's what i learned in the wake of my lyme's news: it's really hard to distinguish between a chute and a ladder. the days following my diagnosis were filled with little miracles. maybe all days are filled with little miracles, but i'm too distracted by what i think is my life to notice them. sometimes bad news is the best way to see all the good quickly and clearly. bad news has a way of waking us up, sort of like a glass of cold water in the face. we might prefer waking in a gentler way, but we can't argue with the efficiency of the cold-water method. and we'll take it if it means we're not going to sleep through the party."

"until then, i'd only learned this about grace: sometimes, like in my case, you get blessed for no reason. you get something wonderful that you don't deserve. but on that day, i learned that the flip side is also true: sometimes you get screwed for no reason. you get something awful that you never, ever deserved. it all slips away. you cannot earn yourself an easy life or even a fair one."

"but when your miracle doesn't happen the way you planned, it becomes important to look for peripheral miracles. peripheral miracles are those that aren't directly in front of you. they're not the one on which you've you been so damned focused. you have to turn your head to see the peripheral miracles."

if i could put my kindle out on a constant rotation so that everyone that i think would love this book could read this book, i totally would. i loved it that much.

carry on peeps, carry on.

you know i am doing my best to do just that.

prayers for chase

tomorrow night at 7pm (minnesota time) chase's family is asking for prayers.

here is the request from the family:

"We know our little Captain America has a long road of recovery ahead of him. The entire family has been feeling the power of prayer since Chase's accident happened but we would like to super size that power.

We are asking that you take a moment of your time tomorrow evening, Sunday the 21st at 7pm, to say a prayer of healing and recovery for our Chaser. Feel free to light a candle if you wish. We want to see the power of prayer in mass!"

so please send your prayers, good thoughts, positive vibes - however you send your good energy out into the world, please do so at 7pm chase time.

here are the latest updates on chase:

+++"Good morning, Chaser has had another stormy morning. Yesterday evening ended Great. Chase got is new wheels and he loves them! We took him for an hour walk in the hallways in his new wheelchair. He really likes to be proped up, and the fresh air in his face as we stroll seem to sooth him. He had a very restless evening with a couple N-Storms (N-storms), but did manage to get a couple hours of rest. We have been trying to somewhat regulate his sleeping patterns with the meds. But reducing the pain altering drugs, and switching them to less drowsy meds, seem to be countering the sleeping meds. He has had a couple of N-Storms this morning, and we are still struggling with his cocktail of meds, dosage, and timing to keep these under control. The Dr is impressed that he is so responsive to the meds, a little to resonsive, but we can alter the dosage until we find the right balance. Chaser squeezed in 45mins of PT/OT therapy. He was pretty agitated during the session, but did give a few slight positive signs of a reaction to some of the stimuli the therapists offered. He is going to get some visitors today- Ashly and Tiffany are going to take turns hanging with him today, and giving him some TLC. Mom, his brother, sister and I are going to take the evening off and going to get a little thearpy of our own- Tank (Tanner) has a hockey tournament nearby for the his hockey team,the annual Warrior Cup- a very fitting name for our night of partial family time. You are in good hands buddy, I hope you have a great evening!"
+++ "Chase amazes me every time I see him. He is currently doing another vest treatment to help his little lungs and breathing. Chase's day started out with some therapy and a visit from some of his favorite buddies. Mom and Dad got to watch their favorite hockey player in action, and Ava did both the hospital and hockey. Chase's storms have been a real challenge today. It is such a fine line between making the storms stop and keeping him alert. He had a nice warm tubby tonight which definitely helped him relax and settle in. He is exhausted tonight after battling storms for a big part of the day. He will sleep well tonight and be fresh and ready to battle again tomorrow."

thanks for sending your good thoughts out tomorrow, i know they are very appreciated and they will help in ways you may never know. xo

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

catching up

it has only been a couple of days but it feels like a long time since i have wrote a post. hope you all have been well in the meantime.

+++ we had a great time in vegas. we got to see tim mcgraw and faith hill's show at the venetian which was awesome. thanks to my friends kerry and erin and some secret planning they did (love you girls!), we got to meet tim and faith before the show which was so very cool. here is proof. can you tell which two are more pale than the other two?;)

their show was really good, we of course completely lost it when tim sang his song "live like you were dying". that was a tough moment for sure. but we loved the show and it was such a special and once in a lifetime kind of night.

it always fun to check out the colors within the casinos, one my favorite stops being the bellagio garden. so gorgeous every time i have been there, and i love how the garden changes depending on the season of the year.

 

+++ we came home to an awesome surprise. some of our great friends, along with help from my mom and dad, spent their sunday working their tails off in our yard totally overhauling it for spring (we love you guys, thank you). our yard looks so amazing it is unbelievable. mowed. edged. powerwashed. barked. trimmed. patio furniture out. no more weeds (not even one in our entire yard). no more dead plants. gorgeous flowers in our front and back yards. new vegetables planted. so amazing. we are so lucky to be loved by so many great people. lucky, lucky us.

 



+++ thanks to everyone who has signed up for "the fun mail for chase, ava, and tanner campaign". you all rock! i will be organizing the weeks and getting back in touch with you all later this week. thanks so much, and please get in touch with me if you would like to have a week and haven't had a chance to let me know yet.

+++ i intend to get my act together this week to send out the bracelets so those of you that wanted one should see them coming your way soon. if you want one and haven't let me know yet, drop me a note and i will send one to you.

+++ thanks for all of the continued good vibes for chase, here is the latest update on our little fighter today. fight chase, fight!
"Chaser has really put up a good fight today! His fluids remained consistantly high throughout the night and into the day. With constant suctioning necessary, as well as periodic deep suctioning- which is when a long tube down is inserted down his throat to remove the secretions. Although this clears up his airway, and helps him breath easier, it causes visible discomfort in his throat, and by no means, is an acceptable, permenant solution. We continue to pray that he begins swallowing, but there are meds we can use to dry these secreations to a managable level now that he no longer has the NJ tube. His morning began with another neuro-storm, which ceased almost as quickly as it started, after we administered some pain relieving meds. It appears that following the Dr.'s game plan to treat these neuro-storms is working, and working well. His surgery went great, and his recovery from it seems to be going well. We have started him on feed again at a much lower dosage. He has been holding it down with no problems and no complications with the new tube!! He has experienced two breif neuro-storms since the surgery, and they too were calmed to a hault fairly quickly. This adds more evidence to the theory that pain is triggering the onset of these. Having the ability to control these storms, the posibility of transfering to Gillett's this week still remains. We are hoping to find out tomorrow. With Chase resting clamly in his hospital bed and Gramma Judy by his side -Tanner,Ava,Mom and I wind down a night together watching the Wild earn a much needed win over the Oilers. Although the conversation we had with the Dr. Today regarding Chases MRI results, did not vary much from the previous Drs', we both know there is a reason Chase is still with us, and we continue to trust God and his lead on this journey."

+++ i loved this post called the most beautiful education by dig this chick as it made me think about all of the great adults in malena's life and how lucky she is to be surrounded by so many wonderful people that love her so much. yep, it was a handkerchief read (i have traded in kleenex for handkerchiefs thanks to my friends doreen and charlie;)).

+++ man, scanxiety is coming on strong. two weeks from today is results day. 14 days until we know. will i get the all clear to live my life for another three months as normally as possibly with the black beast constantly in the background? will i get the results that indicate treatment needs to occur (and we all know what that means and it isn't good)? please, please, please let it be the former and not the later. please, please, please.

happy wednesday all, i hope that it is a great one. xoxo

the "fun mail for chase, ava, tanner" campaign + jenn update

today was a good day for chaser - love that on a friday. definitely hope that the weekend carries the same momentum for him. go chase!

here is the latest:
+++ G is good - "Nothing better than starting the day with good news! Chaser had a picture of his chest taken this morning in preparation for his G-Tube, everything is in the right place- this will definatley minimize and complications with the procedure. They are going to get it schedualed, and hopefully this will take place Monday or Tuesday. Chase and I had a great night. He rested all night, with one brief Neuro-Storm that lasted a couple of minutes. I expressed my concern with the Dr., that although it is good to see the Neuro-Storms much less frequent, and less intense, I feel that he may be on too much muscle relaxer to control these. He agreed, and we are going drop the dosage a little, to see if Chaser can be more alert, and still avoid having these storms. Mom and I can definately see and feel The Lord answering our prayers. We are both feeling a constant flow of energy and a calming, alomst clarity with the situation. Chaser just recieved a welcome home live concert from the musical thearpist. She played a few of his favorite songs from FUN, as well as a family favorite Hey, HO from the Lumineers. He had a breif, but exciting moment of alertness when mom came in this morning. With his big brown eyes open, and his hands and arms moving slowly- not in the manner they do during storms, he gave a sign that he is glad we are here, and that he has plenty of fight left in him. Our warrior now rests peacefully again, his vitals exellent, absorbing the feeds and nutrients that we have restarted, after pausing 3hrs prior to his G-Tube test. We look forward to seeing more good signs of his recovery, and pray for more small miracles to shine their light. God is good!"
+++ small room, big hopes - "It was a very positive day here at Children's. Chaser has been resting most of the day with a few sporadic, but meaningful, moments of alertness. He has had plenty of visitors today. And for a few of them, he opened his eyes and made his presence known. He seems to be reacting to touch in a more specific manner than previously. Which is definitely a step in the right direction. It has been a busy day here, with countless downloads from different specialists, and adjustments, introductions to the medication cocktail. We just met with one of the specialists from Gillett's to discuss their philosophy, techniques, and program.....Wow! We are confident that there is no better place for our Our Warrior to carry on his fight! His G-Tube will be scheduled to be inserted on tuesday, and barring no complications or infection, we will move over to Gillett's to begin the next chapter in Chasers recovery on thursday. His Neuro-Storms were nonexistent today, and although he remained in a peaceful state of rest the majority of the day, we can definately feel his inner spirit. We were moved from the PICU into med-serge floor because of his no longer critical condition. So besides going from the Penthouse in PICU, to the smallest room in the hospital, it has been a GREAT day!"

so i have been thinking all week about something that we could do for ava, tanner, and chase. last night i realized that we could do what we do best, send them fun mail! i checked in with lisa, chase's mom, and she thought the kids would really love it;) this will be a great way for all three kids to have some fun mail each week. chase is 4, ava is 7, and tanner is 9.

here is how the fun mail campaign will work:
+++ you will be assigned a specific week, and that week you send chase, ava, and tanner some fun mail. it can be anything you want to send them - a card, fun snacks for ava and tanner, some captain america mojo or books that can be read to chase...whatever you would like to send.
+++ let me know (leave a comment on the blog, email me, text me, facebook me, send smoke signals, etc.) that you want to be part of the fun campaign. i will assign you a week and will then give you their home address so that you can send the fun mail. i will send you a little reminder before your week;)

i am really excited to start this - i think that it will be a great way for some fun to arrive each week for the kids, and for things other than hospital bills to be in the mailbox. you all know that i love fun mail, and i think that it is a small gesture that can have a large impact.
i hope that you will join me, if anyone deserves fun mail, it is ava, tanner, and chase.

i also wanted to provide an update on jenn today. your good vibes definitely helped with some good results. she does not have to have any further biopsies or treatment at this time. awesome news! she has some other concerns that she is working through as side effects from her previous treatments. so keep the good vibes going her way. go jenn!

i had to stop at urgent care on my way home today (don't worry, nothing serious). i of course had to fill out the form and mark the "cancer" box. when the nurse was asking me questions she said "you marked yes to cancer?" i said "yes, i have stage iv melanoma." her eyes darted to me, she winced using just about every muscle in her face, her eyes darted to me again, and then she looked like she was so sad for me and simultaneously apologetic for having that reaction. her reaction pretty much messed up my night. it was just so jarring, that "oh wow, that is really not good" look. yep, i am pretty clear on that. but watching her reaction was like being slapped in the face with the reality of the severity of stage iv. not a great moment, i was happy to get the hell out of there.

i am going to be off the blog for a few days, barrett and i are finally going on the trip that we were supposed to have taken for our anniversary in february. when we had to cancel that due to my surgery, we decided we would make it happen before my next scans. we are off to vegas for a couple of days. if i hit the jackpot, i will send a quick blog update that just says "big winner";)

have a great weekend, embrace every minute of it. xoxo

for chase, part xii + for jenn

happy friday everyone, the weekend is here. finally.

here is the latest on our little fighter:

+++ "I have just finished catching Chaser up on the posts. He is peacefully resting with mom lying besided him. Her beautiful face is lit up with that smile I have missed so much. He looks so cute, so normal, lying there in the jammies we put on him. Our Warrior had a restless night. He is still showing signs of his inner strength and fight. During his Neuro- Storms last night, his NJ tube was pulled out, and had to be reinserted. He also managed to losen his IV line in his foot as well. We have removed it and, the staff is comfortable giving him all of his feeds and meds through the NJ tube in his nose. There is still talk about putting a G-tube in his belly and removing the NJ tube. I really don't know much about it, but I would rather limit the number of pokes on my guy. The nurses had to deep suction him a couple times to remove the fluid build ups. He stiill seems to like the Vest treatments as they continue every 6hrs. The have added another med to the cocktail to help with muscle relaxation. His Vitals are all great. He is still breathing on his own. Chaser has enjoyed some much needed bonding time with both sets of Grandparents since we have returned hom. It has been therapeutic for both Grammas and Grampas, as well as Chaser! Tanner and Ava appear to be dealing with the situation better than we expected. We spent a great night together, and woke up to Gods clean new blanket of snow on the ground. Before going to school, we enjoyed the morning building a snow man for Chaser, as the last good wet snow that fell, Chaser and the family spent the day building a snowman that Chase named "Chilly". We all feel you love and prayers - and they continue to lift us up when we sink to a seemingly unrecoverable low. Mom, kids and I- really want to thank you all (as Ava would say....) so, so, sooo, soo , so, so, so much for everything!"
+++ "As I sit here alone the room with Chaser, I reflect on what a great day it has been. He lays there motionless on his favorite side, vitals perfect, the only sound in the room the slight gargling of fluid in his throat. It has been a busy day for him, but he really hasn't done much. His brother and sister were able to visit for a few hours. They handled it very well. Tanner layed beside him on one side, and Ava sat on the other. They alternated reading to him for a couple of hours. This was as good for them as it was for Chase. I have talked to the Nurses and they have scheduled to put a G tube in. He is going to have a couple tests early in the morning to assure it goes smoothly. We have put an IV back in his leg, and I was happy to see he did not like to be poked with the needle again. He woke from his sleep and showed obvious discomfort. I did manage to get a glimpse of his eyes again today, although sluggish, they still hold there their deep brown light of life in them. The nurse and I gave him a bed bath and got him all cleaned up for tomorrow. He has been approved to go to Gillettes Hospital sometime early next week, just waiting on some of the logistics to get cleared up. Mom and I are excited to get over there and get some serious OT and PT therapy started. Our Warrior continues to rest, as he has done most of the day. This is good, rest yourself Chaser, we have a big battle ahead. I am ready to start whenever you are!"

please also send out good thoughts and prayers to jenn. she has a day  full of doctor appointments at seattle cancer care on friday, so we need to send her all of our good mojo as she goes through her day. thanks to all of you who have been part of the fun mail campaign for her, i know that she really loves getting that fun mail every week. good luck tomorrow jenn - we are rooting for you all the way! xoxo

for chase, part xi + pictures + 2013 shore walk/run

today was chase's first full day back in minnesota, and he was reunited with ava and tanner. that is awesome. chaser had a good day, lots of time breathing on his own and getting the nutrients he needs. i am so thankful that he had a good day. we are going to need to keep sending a ton of good prayers and thoughts to chase and chris, lisa, ava, and tanner as this new chapter unfolds for all of them. but we are good at sending the needed vibes, right? right. so onward we go as onward they go.

here are the latest updates on chaser:
+++ rekindled spirit - "Chaser had a good night! We all got some well needed rest. His vitals remain great, his breathing sounds much better, and we did not have to do many deep suctioning last night- it appears the secretions from his lungs have slowed down- we are hoping he is / or will begining to swallow soon- He is still managing to fill diapers with the aid of the laxative we have been giving him. We are going to take him off it and let him make a mess of his diapers on his own. We just completed another ACS - or Vest treatment, he seemed very relaxed throughout the session. I was able to work in a little PT and move his arms and legs to give him some exercise. Prior to the vest treatment when he filled his diaper, and he was quite agitated. As Lisa and I picked him up to clean the bed, with his face to my chest, he let out a sigh.............and completely relaxed. Our little fighter knows we are here with him, and we are all ready to rumble! It was so refreshing for both of us to hold Tanner and Ava last night. It did bring out some of the fears and feelings we both have kept surpressed for this entire journey....but it did re-energize us, and re-emphasize to us, that we have no choice but to keep positive and push forward- which we both need. We appreicate all of your support and prayers, the definately helped me turn my mind around this morning. We are rested, positive, trusting in the Lord, and ready to tackle today."
+++ "Wow, was it great to have the family back together again! Tanner and Ava were able to hang out with their little brother today for the first time since the accident. We had a child specialist from the hospital help mom and I with a breif education and question session prior to seeing Chase. It went well. It is a hard for their little minds to grasp many of the concepts involved with a situation like this, but after a few hours of emotions, we came with a game plan to work towards. As a family, we are going to work hard, keep thinking postive and trust God, that Chase will be stable enough to get him home - where we can work on his PT and smother him with Love! ...Chaser had a good day. His vitals remain good. His lungs are still strong and have been off oxygen assistance since 10am. Back to breathing on his own! He has been keeping his feeds down- so the Dr. has decided to up the level to 60ml/hr. He is burning a lot of calories with his frequent Neuro-Storms, and all of the body movements assoctiated with them. The outbursts are increasing in frequency and seem to be intensifying in their nature. We have increased his meds, and added a few to the cocktail. Hopefully this will tame them. Chase continues to show his fighting spirit, as he opened his eyes while he was given a suction treatment. He was mad! He continues to be more tolerant of the vest treatments, and almost appears to relax during them. We have been introduced to many of the staff in the various areas of the hospital, and we are confident we are in the right place. Mom and I are begining to accept what has happened and are starting to discuss the future and what it may bring. We are ready to start the various levels of therapy with Chaser, and look forward to seeing more of Gods miracles unfold infront of our very eyes!"

i am sticking to the promise i made myself to keep current with our pictures this year, and it feels damn good. are there still tough moments? you bet. but there are far more moments of joy and a little peace. i am so happy that our lives for this year are documented. tackling pictures is definitely one of the bravest and best things that i have done this year. hands down. the moment today when malena spent time going through all of the pictures was magic. it was like a little fairy dust had been sprinkled on my day.

if you love broccoli, you should make what i ate for dinner. broccoli mixed with olive oil, kosher salt, and pepper. roast it on 425 degrees for about 20-25 minutes (thanks hooch). so good. my green smoothie tonight (kale, spinach, cucumber, apple) also rocked (i had already drank half of it down by the time i took this picture), i think that i am pretty much becoming a green smoothie master;) yum.

i created a team for the 2013 shore run/walk today to benefit fred hutchinson cancer research. our team name is "alli's angels" and you can register here. i am doing the 5k walk again this year but runners are welcome. if you would like to be on the team, or to donate to cancer research, or to send us good thoughts while we walk/run, or all three of the above - we would love it! for those of you that are going to join the team, if you join by april 30th you get the reduced rate. the walk is on sunday, june 9th. this will be our third annual walk. go team!

i was telling my friend mary tonight that i thought about starting a melanoma walk in seattle this year as there aren't any currently scheduled. i don't have the drive to take on something like that right now. the other and even more significant reason is that on many days i don't want to spend anymore of my time thinking about melanoma than i already have to. there are times that i feel guilty about that. i could do more to educate others, i could read all of the blogs, i could raise more funds, i could just do more in general to boost the knowledge about melanoma. but i have to remember that i am doing the best that i can and i have to know that is enough. this week i got a card from my friend crystal who teaches high school and she had her kids watch the "dear 16 year old me" video which i have posted on this blog a couple of times now (watching it is a kleenex moment for me every single time). she had the kids watch it as they get ready for prom season. here are some of the things that crystal heard from her students after the video, "thank you for teaching us something that matters in our life", "i bought 3 bottles of sunscreen yesterday to keep in my car, purse, and home," " i got new sunglasses that are uva/uvb protected", "i went to go tanning last night but got a spray tan package instead." it was a good reminder to me that being brave, continuing to fight each and every day, and sharing my story with you is enough. it is just enough (thank you jilbert for the reminder - love you).

so i have made my first goal for 2014, which will be to start a melanoma walk in seattle. making my first goal for 2014 is a big deal. i get nervous scheduling lunch appointments for next week these days because the future seems so scary. scheduling anything past my scans this month causes me a lot of anxiety because i do not like making plans that i don't know i can keep. that was the exact reason i didn't make many plans during the year i was on interferon and felt like hell, i never knew if i would feed good enough (which was relative during that entire year) to follow through with anything. i am making plans past april 30th, but taking numerous deep breaths after the plans are made.

so 2014...here is a little heads-up, i have my first goal on the list....

....and you know me, i love checking things off my to do lists.