Thursday, May 30, 2013

results + relay for life

today was another loooong (in duration and intensity) work day.

but today became a great day at 5:25pm when i got a call from my dermatologist.

as soon as i saw his number light up on my phone i took a deep, deep breath.

i said "hi dr, how are you?" and he said "hi, i am good, and so are you." have i mentioned that i love my derm? i knew then that whatever else he had to tell me it was going to be ok. the lump was benign. how awesome is that? i am still kind of in shock. i think that i have gotten so used to bad news that when good news actually comes it takes a little bit longer to really sink in - but now with two good results in a row, i think that i have the hang of this. i would be more than fine with having good news be the norm for me from now on. let's just go ahead and plan on that. i deserve it don't you think? i know you do and that is why i think you are so great;)

thank you so much for all of the good thoughts and prayers and ongoing mojo this week while i waited on the results. i felt all of the good vibes coming my way and appreciated it immensely. clearly, they worked - you all are magic makers, so glad that you are on my team. lucky, lucky me.

if life (aka drama at work) cooperates with me tomorrow, i am going to make it down to aberdeen to join my parents in the relay for life they participate in each year to raise funds for the american cancer society. the first lap of the relay is always the survivor lap, and i am intend to walk that lap with my dad and my friend sharon (hi sharon!). i sometimes have mixed feelings about the term "survivor" but that is a whole blog post unto itself. i will bravely walk that survivor lap, and i can guarantee you that there will be tears. lots of them probably. but that is ok. i deserve that lap. i am surviving - and thriving. i will be thankful for the opportunity to be there. to walk that lap. to be with my parents. to acknowledge that i am fighting, to send good vibes out to all of those i know that are also still fighting, and to remember those that have already finished their fights.

i will walk for them.

you will walk with me.

anywhere i go, you go.

have a good weekend. xoxo

Wednesday, May 29, 2013

momma love

long day.

today was one.

but nothing that some dinner at "chicken robin" and a game night couldn't make better.
speaking of "chicken robin", i would like to say a big thank you to whichever of you was the generous person who did a random act of kindness for us. we got a card from red robin with 'a random act of yumness' note and a gift card for $25. the note told us that a little birdie told them that malena and i like "chicken robin", and that they wanted us to enjoy a meal on them. so if you are that little birdie, know that we appreciated it very, very much and we had a great time. thank you so much for your kindness in doing that.


i have heard a lot of great things about the book "momma love - how the mother half lives" by ali smith. so i ordered it and it came today. i knew that i was meant to have this book. i can tell already with only barely skimming through that i am going to pretty much love this book. the last paragraph of the intro by ali reads "some of these stories will resonate with you. others will piss you off. that is inevitable, and is as it should be. but what i believe may emerge is the commonality in the experience of living life as a mother rather than the differences in the details. and i'm confident that in one or in many stories, you will find a reflection of your own experience. i hope you will find strength in these shared truths."

as i was flipping through the book, i saw that the pictures are amazing (which i had heard a a a lot about). i can't wait to read each and every one of the stories. ironically (or maybe not so much), one of the first stories that i turned to was about a woman called diana joy colbert and the title was "i don't know what kind of mom i would have been if i hadn't got sick." i haven't read her story in its entirety, but my eyes fell on the following text first. "a year of my life has been spent wondering if i'm gonna die before i'm forty-one and how my daughter's going to grow up without a mother. but, you know what? things are gonna work out. it looks very grim but i can't dwell on what what we don't have because we have so much. leukemia really focused me and made me realize how beautiful my life is and how much love i have. we have so many people willing to help that i just need to focus on that. we're not gonna starve. we've still got friends and family. the universe is an abundant place and i just feel like we're gonna be taken care of. and being a mom inspires me to get better. i know two people - one of them was an orphan and the other's mother died when she was fifteen- and they're both great people. they both turned out great. i think lily would turn out fine without me, but i just don't want her to have to. i really want to have a friendship with her while she grows. i want the privledge of watching her become a person. and that inspires me to do whatever i have to do. i want to see her as a teenager, a twenty-year old, i wanna see who she becomes. to fight for my own life just for me would be so much harder. but it's not just me. i'm not alone in this."

tears. tears. tears.

i wanna see who malena becomes.

so i continue to fight and be brave. each and every day, and it honestly is a fight each and every day for one reason or another. but the fight is worth it.

i can already tell you that when i finish reading this book, i am going to write on the first page to malena. i want her to have this book when she is older as a reminder that the greatest gift i ever got was being her mom, and i never could have imagined the joy that momma love has brought me. i intend to give it to her myself when she is old enough to understand the significance of what it means to me.

i knew i was meant to have this book. i was so right about that. but i didn't realize until today that malena and i were both meant to have it.

love it when life turns out just as it was meant to.

Tuesday, May 28, 2013

attitude adjustment, part ii

i could focus on the fact that work was complete and total hell today, or that i have to go into work tomorrow on my day off. trust me, i could focus on that.

but instead i am choosing to take a couple of minutes at the end of the day to focus on something much more important and useful: a summer bucket list.

inspired by marta, i have thought about some of the things that i want to check out of our summer bucket list, including:

+++ disneyland
+++ airplane rides
+++ hot air balloon ride with barrett
+++ sleeping in a tent for an outside campout
+++ endless s'mores
+++ family reunion with the sheehans
+++ time in pullman with my sister
+++ eating my most favorite dessert ever - the birthday cake my mom makes me every year
+++ eating dinner on our back deck
+++ watching malena play in her little pool
+++ walking behind malena as she rides her bike
+++ park time
+++ pony rides
+++ long walks
+++ train rides
+++ chocolate donuts just because we can
+++ eating frozen yogurt
+++ wearing my favorite flip flops
+++ girl time painting our toenails
+++ farmers market for fresh fruits and veggies
+++ lazy mornings in our favorite coffee shop
+++ leaving the windows open to let the fresh air in
+++ watching gorgeous sunsets
+++ bbqs
+++ fresh fruit
+++ my retreat to the oregon coast....

and i am just getting started...what's on your list?;)

chase had some fun with shaving cream today, check out the latest on his day:
+++ "I hope everyone had a great holiday weekend. I know the Lykken household was very busy. Family time at Valleyfair, hanging with the neighbors, shopping for Chase in preparation to come home. The date has not changed, it is still mid June, but that will be here before we know it and I want to be prepared. Chase spent alot of time with his Grandma Lykken, poor Grandpa was fighting a cold so he didn't get to spend to much time with Chase but spent alot of quality time with his other grandson Tanner fishing. He also made himself busy fixing things around the house. We greatly appreciate it. Our support system is absolutely incredible. We couldn't get through our day to day lives with out the help of our friends and family. With that said thank you to all who have touched our hearts and helped us out in so many ways. I don't think words can express how grateful we are to have you in our lives. Love to you all :)

Chase has had some great days in therapy. We got to keep the famous trike over the long weekend, so we made good use out of it. We took many of rides up and down the skyway this past weekend. Chase just loved it and so did we. Today we saw something new. Chase usually tracks voices and sounds with his eyes moving side to side but today he moved them up and down. Which was very exciting to see. He only did it a couple of times but hey I will take it. Hopefully there will be more to come. Today in PT/OT Chase got to play with shaving cream. It truly is amazing how they come up with different thing to try to get movement. Chase was sitting on his therapist lap, in front of him was a table. She put his hands on the table and sprayed the shaving cream all over his hands on the table making a huge mess. Chase's reaction was priceless. I almost couldn't believe it. He had small subtle movements like he was trying to pick up the shaving cream. He moved his index finger a couple of times as if he was pointing towards the large pile of shaving cream. He also cracked a few of his "Chase's" smiles. while all this was going on his favorite song was playing in the background, Some Nights. I think Chase is rediscovering his mouth. The last couple of days he has been opening his mouth wide and sticking his tongue out. Playing around with the saliva that sits in his mouth. It almost seems like he wants to say something. I know we are a long ways away from that but there is hope!!! I guess for now I will take the sticking out his tongue part even though he knows I wasn't a big fan of that kind of behavior. I will take it......Dont tell his sister I said it was okay to stick his tongue out. Chase's PH levels have been going up and down this last week. It started with a 3 then moved to a 7 went back down to a 5, then a 3 and now today it was 2.8. We are going to increase his meds again. The doctors have suggested to stick him with a IV again but Chris and I are really againist it. We feel it is just a quick fix or a band aid so to speak. With the IV he will get the med fast but then what. His therapy will diminish because of the IV. It is hard to do any stretching with that in. He wouldn't be able to start his pool therapy which is suppose to happen this week. Just so many cons and not enough pros. So we are going to up his meds and today we started to put some actual formula in his G tube. That will help the acidity. The nurse gave him 10ml today at 2:00 and another 10ml at 6:00. He kept both of those down which is super exciting. Hopefully that is a good sign he can keep that in his stomach and we can add more. Cross your fingers!!!! Here is to more good things to come. Good night to all."


happy wednesday, mine would be happier if i wasn't at work...oh wait, i am supposed to be adjusting my attitude...happy wednesday, we are one day closer to friday.

Monday, May 27, 2013

attitude adjustment

i am working hard on having an attitude adjustment to recover a little from the last two weeks. i am trying to shake off all of the fear and anxiety and get back to life as "normal" (never really sure what that even is anymore). it will take awhile to kick the bad vibes, but i am trying.

on friday my derm was able to get the entire tumor out. he thinks that it is a fatty tumor that will be nothing to worry about, but we will wait on the results to confirm that. i am feeling a big sigh of relief that he thinks it is nothing, but as barrett says, we will be cautiously optimistic until we get the actual results. my leg is now feeling pretty sore, the bruising has kicked in so that makes it a little bit tougher to walk without favoring my left leg. in two weeks i will get the stitches out. the stitches and scars will be worth good results. thank you for all of the good wishes and thoughts, i really appreciate it. i was thinking of all of those good thoughts on friday when i was laying down and staring at the white ceiling tiles while the derm was taking the tumor out;)

i also wanted to say thank you for all of the good thoughts for crystal, she got her results back on friday and both of her biopsies were benign! awesome news, huge relief.

our weekend was full of family which i loved. we got so spend some quality time with our newest family member, isidro, and as you can tell he is about as cute as they come.



we went to the races on sunday like we do every memorial weekend, a longstanding family tradition. i think that we may have a little gambler on our hands. malena spent a lot of time checking out the race stats and informing all of us which horse we should put our bets on.

we also got to see a great video of chase smiling this weekend, we loved that. here is the latest update:

+++ "Bummer. The race did not finish the way we had hoped it would. Paul's teams car crashed in the 3rd lap, but at least JR walked away from the crash safely. With the quarter of a million fans that attended that race, I know there are plenty of people that walked away disappointed, but I can't say the same for this race-Chaser had a great day! Although he was up at the hospital all day, he was able to attend the HIP-HOP festival at Canterbury Park today in Spirit. I received a call yesterday from a friend of a friend, and very generous man, that he had pulled some strings and wanted to have an artist do a painting in honor of Chase and his fight on the Graffiti wall the festival. Although Chaser as familiar with Snoop Dog, as his mom and dad are, I am sure he would have been fist pumping with all the rappers, had he been able to be there! He kept his streak of sleep filled nights going for Gramma Dawn, letting her get her beauty sleep on the pleather, coarse, couch-bed next to him in the room. We asked the nurse how the night went, and she laughed and said, Gramma sure slept good, I came in and she was snoring :). It has been great to have Gramma and Gramps at the house to help out - they are definitely earning their keep. Gramps took Tanner and Casey fishing today, and they managed to catch a few despite the crummy weather. We brought Chases puppy Carly up to reunite them. It wasn't quite the blockbuster moment we had hoped for, but Chase seemed to recognize her, and appeared to lift his arm a little to try and touch her the first time I put her on his lap. I helped him out, and when that soft furry ear of hers that he used to tirelessly tug on, slid between his fingers, he did make a little facial gesture and squint his nose. Carly seemed a little taken back by the entire situation, after licking his face a few times, she wanted to get back on the floor and look the other way. Maybe she knows something is wrong with Chaser, maybe not, but it was good to us to see Chase together again with his best friend. Chase remained alert all day, with his eyes wide open in a very calm, relaxed state. In Between the visitors we had today, mom and I took Chase for a stroll on his trike in the skyway, and managed to get more smiles on command from him. I can't tell you how incredible it is to see him smile! It was two weeks ago tonight that I sat with him on his bed, watching him curl his little body in pain, helplessly listing to the loud moans, praying I could see him smile again. Well, here I am, smiling as I write this, knowing that he has been storm free for 14 days, and listing to his soft, gentle breaths. Wow! God is Good, Very Good!"
+++ "For the last the last ten years, this saturday evening would be filled with excitement and anticipation of the race to follow tomorrow, the Indy 500. It is has been an annual trip to Indianapolis for Lisa and I since we have met, but this year we will be watching it on TV instead of live and in person. We have a new race we are front and center for, and this one Chase is in the drivers seat. He is currently in first place with all of the accomplishments he has made in the last couple of days. He is still storm free, and sleeping through the night. We haven't had a heart monitor attached to him in three days. His muscle tone continues to be tamed with the meds, enough so that he is able to sit and tolerate a self peddling trike. (We posted a quick video of this on his facebook page). We are anxious to get him home to start a new chapter. As strong as we have both tried to be, we realize that it is a limited time we can keep up this pace. Unfortunately, we are starting to see how it has affected our other two precious children. We are working on plans to modify the house and accomidate Chaser coming home- and to be honest, it can't come soon enough! We have decided to take away some of my mancave, to make what used to be our office, into Chases new pit stop. We have spent the last couple of nights at home with Tanner and Ava. Last night Amy spent the night with Chaser, while Tank, Grampa L, and I went fishing, and mom and Ava got their nails done. Tonight Gramma L is having a sleep over with Chase, as we and the kids just got home from a great day with the neighbors at Valley Fair. Mom and I are looking forward to cheering JR #4 on tomorrow on our 12" LCD TV by Chasers bedside tomorrow :) As tough as this whole situation is, I could not imagine trying to get through it without the support that we have been receiving. It seems like everytime one of us hits our breaking point, there is something or someone there to pick us up. We are blessed to have all of you behind us, and WE want to give you all a heartfelt thanks........ Thank You! God is Good!"

last, but most definitely not least, we remember those that have fought for our country on memorial day. i liked this post we remember as it gives good reminders of how showing our support for service men and women can go a long way. sending much love to our family members who are currently serving - love you. xoxo

Thursday, May 23, 2013

biopsy friday

this has definitely been an off week for me. the events of the last week since finding the lump have turned me a bit sideways. i am feeling out of sorts in a million different ways.

i am really pissed off that my three months off from melanoma land got taken away from me by this lump. by the time i get these biopsy results back, we will likely be in june already. almost half of my time off in between scans will have been over by that point. i hate this lump from taking any amount of my time.

i am scared out of my mind about these biopsy results. the conversations about treatment the other day with my oncologist keep spinning in my head. talking about if this is melanoma, and starting treatment. what happens if the treatment doesn't work. i literally can't handle even thinking about the need to start treatment because we all know what that means. i can't even write this paragraph without having tears streaming down my face. i think that my tear ducts are on automatic reflex when they hear the word "treatment" because it is like the faucet is turned on everytime that word crosses my brain.

i am super sad.

i am completely exhausted, i am barely sleeping and am really stressed which make for a miserable combination.

i am really nervous.

i am very anxious.

i am tremendously worried.

i am scared out of my mind, and i am sick and tired of being scared and it only seems to be getting worse as each appointment comes up.

i am doing my best to keep living.

i am being breathing deeply.

i am being a mom, and enjoying malena's first gymnastics show. we celebrated by having chocolate donuts for breakfast (you know how we feel about starting the day with donuts), and we had a pizza party with cake and ice cream for dessert. she helped make the cakes and then decorated them all by herself (note below how many candles and decorations we needed to celebrate;)). she was very proud of them, i was very proud of her.




i am being a climber. tonight was our monthly mystery night with the girls, and my friend kimberly's mystery surprise was thai food for dinner followed by a climbing class. it was so fun. i could have climbed all night if they would have let me. check another first off the bucket list, i am the one in pink on the right side making my way up the wall.
i am believing that everything will be okay. i got this newsletter from liz lamoreux and it couldn't have been better timing.
 
"hello beautiful soul,
Today, I really want to invite you to pause right here, right now, and read the words in the photo below while you take a few deep breaths.

everything is going to be okay

I know this is a hard one sometimes. Over here in my corner, a few people we care about are in the midst of health concerns and grief, and I'm standing on the edge of wondering if I can trust it too.

But then I close my eyes and remind my body and heart what trust feels like and hold onto the belief (by my fingertips) that all really will be okay. Even when I can't control what comes next. Even when grief will be part of the journey. Even when I wonder why life hands a person so much.

And I guess today I just really want you to know that you're not alone as you seek ways to trust that everything is unfolding just as it should and that it really will be okay.

Thank you for this space in your inbox. Sending light and peace to your corner of the world today. If you need me to catch anything, especially as you think about trusting today, just press reply and share where you are. (And yes, I really mean that.)

Blessings,
Liz"
i am sending good vibes to chase, here is the latest on our little warrior:
+++ "If a smile is worth a thousand words, then you could have written a novel today in our meeting with the Drs and staff! The overall tone of our discussion was on Chasers progress. Everyone seemed very pleased with his muscle tone, distinct reations to stimuli, processing, swallowing, and subtle attempts to communicate. Although he continues to progress at a slow rate, he is definately heading in the right direction. Mom and I are still holding out for more, but clearly its up to Chase and the Big guy to set the pace for this marathon. We also discussed how much sleep he is getting and how overly rested he is lately. Chase has clearly been doing a good job- But we know He is capible of more, much more! Next week we are going to try and slowly drop the doses of some of the pain meds that are causing him to be so drowsy. Again, it is going to be some trial and error, but we will figure it out. His stomache PH is back to normal once again, lets hope it stays there. It seems like that was one of the driving forces to the N-storms, that only 11 days ago, completely hindered his progress. So overall, the meeting went very well, but the highlight of the meeting was the dission of Chaser coming home. The Drs have set a date for mid June- Only three weeks away! We are not sure how realistic this is, and more than likely it will get bumped out a time or two, but the conversation is there! Chasers day in therapy was good, but uneventful. He did some stretching, worked on positioning, and did a little snoozing. While the highlight of our day came in the afternoon meeting, Chasers came this evening in the form of an email. One of his little lady friends Lilly, emailed mom a video message. She called me with tears of joy, explaining she had just played for Chase 5xs, and all 5xs he made a valiant effort to put a smile on his face! Mom is staying with Chase again tonight, and some friends dropped by to bring some laughter to the room. I hope you boTh have a great night, and a good day tomorrow. God is Good"
+++ Chase had another wonderful night last night. Grandpa Sheehan was the one in charge. He had the privilege of sleeping in Chase's room on the most comfortable couch/bed ever.....not!!! I must admit wasn't sure how Grandpa was going to do cause he can fall asleep in the middle of a conversation, in church or even standing up if he was really tired. But he did GREAT!!! I was so proud of him. I knew Chase was in good hands when the first thing Grandpa said to me when I walked into the room, "it was an honor to stay overnight with my grandson". Although this situation that we have found ourselves in, is the most horrible thing I have ever gone through and I would give ANYTHING to have our life back, has also changed our lives for the good. I see things in a different light. How I act towards people, seeing the postive in any given situation and to be able to share my feeling towards my friends and family. I do owe alot of that to my wonderful husband. He can turn any given situation into a positive. When I am down he just builds me right back up and for that I thank him and love him even more!!!! I know Chris is feeling alittle down right now because he has not been able to see Chase that much in the last couple of days cause he has been sick but honey just know Chase is doing great and he loves you very much. Soon you will be able to walk to his bed side lean in for a kiss and feel his breath againist your face. Chase is anxious for you to see him again because he is longing for some bacon to be rubbed in his mouth, he knows mom ain't doin that....

Chase had a great day of therapy and a fun day with Grandma and Grandpa L. I know Grandma got to snuggle up in the recliner holding Chase for awhile and I got to go to Tanner's track and field day at school and then take Ava to gymnastics. Chase's therapist in speech was impressed with his mouth movements. He had his Trix yogurt, she put it on his bottom lip and it seemed like he was sucking it in as if he was trying to lick it off. He didn't actually do it but he gave it a good ole try!! PT was alittle stressful. Chase has had some stress on his hips so they were doing some strengthening and stretching. Needless to say he didn't like that to well. He let out some heartfelt agonizing cries. That even made Grandma cry. But we know it is all for the best. I just kept whispering into his ear...."No pain No gain Chase"......He is such a big boy and so strong that I know he wants this more than I do.....So tonight we are going to get a could night sleep and start the weekend out right with another great day of therapy. Everyone have a safe holiday weekend........God is Good :)

P.S. As I am writing this post at Chase's bedside he looks over at me yawns a really big yawn, lifts both arms up half way as if to stretch and lets out a big sigh......I guess that means night night....I love that little boy! "
 
i am going to have a good weekend with my family, i hope that you do the same. enjoy all of the moments, big and small. every single one is so important, you will never get them back again. be safe, and wear your sunscreen.
 
i am thankful for all of the good thoughts, prayers and mojo for tomorrow. when i walk in to the room at 3:15 i will take you with me.
 
i am being brave.
 
anywhere i go, you go. xoxo


Wednesday, May 22, 2013

kindness


i thought this post, "a letter to former indiana governor joe kernan" was so, so great.

"today, i’m thinking about how we never really know what other people are experiencing when we pass by them in the everyday moments of getting on and off an elevator to paying for gas to picking our kids up from school to standing in line at the grocery store. for any one of us, a relationship is ending, a daughter is about to have a baby, a new job has been offered, someone has just been diagnosed with cancer. we could extend kindness in these moments if we would pay attention, look up, and even just smile at one another."

i hope that you will "look another in the eye with kindness" today.

have a good wednesday peep. look up and smile. xoxo

Monday, May 20, 2013

next steps

the ultrasound showed that there is a mass in my leg, but it didn't make it clear what the mass it. so i had options.

i could wait and watch to see if it grows, and if it did, i would meet with a surgeon to talk about removal.

i could go to my derm now and ask him to biopsy it or remove it entirely if he is able to.

i am going to take the derm route - you know me, the most aggressive option please.

on friday afternoon at 3:15 i will meet with my derm, and we will see if he can get it all out or biopsy it. on friday afternoon at 3:15, it will be official, only my left leg and my head will be scarless. hate that.

after the results come in from the biopsy (i would guess sometime next week), life may play out in a couple of ways.

if the biopsy is not melanoma and isn't anything else i have to be worried about, then life carries on with scans at the end of july. but my oncologist decided today that we will do full body scans at the end of july now instead of just my chest area even if the biopsy comes back clean.

if the biopsy is melanoma (and we can get it all out with clean margins), there will be two options. one is that i could wait and see if any other lumps form on my body, moles change, etc., and watch for anything growing during my regular scans. another option is that since results indicating that it was melanoma would mean that i have had tumors show up only months apart, i could start a treatment plan to be aggressive in trying to prevent any other new tumors from growing.

i don't feel like talking (aka writing) about the treatmenent options tonight. it was hard enough to sit through that conversations and discuss those potential realities and what they would mean. the treatments themselves, how often the treatment occur (ones that require me to be in hospital, ones that don't), the side effects. what happens if the treatments work. what happens if the treatments don't work. on and on it goes...but not tonight, i have had enough the day.

there are days when being brave takes a little extra strength. it requires digging deep, and then deeper, and then deeper again. sometimes i get tired of having to dig deep. today is one of those days. i don't want to have to dig at all, i don't want to feel like i am constantly carrying a shovel around with me. i want this all to go away, but it never does. melanoma never quits, so i don't either. but the constant fight is more draining that you can imagine.

speaking of others that don't quit, my friend mary sent me this picture today that reminded her and me of chase (thanks mary!). carry on, little warrior, carry on. we are rooting for you all the way.
 
hope you all have a great tuesday. xoxo
 
sidenote:
+++ if you need a good laugh, you have to read this post called tardy for the party

Sunday, May 19, 2013

moments

"we do not remember days...we remember moments."
(cesare pavese)
 
this weekend was definitely full of a ton of good moments:
 
+++ two campout nights and getting to sleep in on saturday morning. i love the mornings when we get to sleep in until we wake up on our own. one of my favorite parts of the weekends.
 
+++ watching malena practice putting while we were waiting for barrett to check out a golf store. i think that the club was bigger than she was;)
 
+++ building a fort out of blankets in our living room and playing in it with malena for hours on saturday and sunday.
 
+++ sitting next to malena while she read me countless books.
 
+++ watching her swim half way across the pool, i love to watch her swim.
 
+++ sharing a gazillion laughs with her, some when we just could not stop laughing and cracking each other up.
 
+++ s'mores and seeing the chocolate and marshmellow all over her face and hands. that girls loves her s'mores in a big way.
 
+++  a ton of hugs and i love you's.
 
+++ renewing my magazine subscriptions, which was a tough moment, but i did it intentionally this weekend to give melanoma a heads-up that i mean business tomorrow.
 
+++ signing up for a photo class that i want to take in july, you know how making plans on the other side of results is tough for me, but i decided i needed to be brave.
 
+++ giving my mom-in-law a birthday suggestion for me, my birthday isn't until july and with the way things are now i would not normally give any suggestions this early because it would feel like i was tempting fate. but, i decided i tempt fate and make plans as if i had no cares in the world about what july will bring.
 
+++ joining friends to walk in a 4k to raise funds for juvenile diabetes.

+++ my friend tami completed her first half-marathon and wore my bracelet for inspiration. awesome.
 
 
+++ my friend mary completed a walk to raise awareness about melanoma and honored me with every step she took. awesome.
 
 
+++ having fun making cards with malena in our craft room.
 
+++ laying next to malena as she fell asleep tonight.
 
this weekend was full of moments, and i loved every single one of them.
 
right after we crossed the finish line at the walk, my friend crystal pointed out a man wearing a captain america suit. we tried to catch him to take a picture but couldn't find him as it was pretty chaotic after the race finished. but we were excited to see another sign from chase, he is definitely continuing to show signs that he is fighting hard - all the way from wisconsin to seattle this weekend;) go chaser go!
 
here is the latest update on chase:
+++ "A weekend filled with excitement! Chaser had another full night of sleep last night with Gramma J- making this this the third night in a row he has slept through the night. A friend of hers came up and used some of his own PT skills to give Chaser his own private therapy session. Gramma said Chase really enjoyed the session that it put him to sleep. This morning Chaser took Gramma J out for Brunch at the Ronald McDonald House. While they were having brunch, we were having a good time ourselves with Tanners hockey team and families, celebrating a clean sweep and taking first place in thier tournament. After celebrating, Tanners team gave Chase one of the Champion tee-shirts they were awarded, so we brought it, and the winning trophy up to the hospital to hang out and celebrate as a family. We hung out in the room for a couple hours, and watched the rain fall hard against the dirty window panes. Although it was storming out side, inside the room we smiled as we discussed this being day eight without any sign of N-storms. With his big brothers help, Chaser had another first today. As Tanner was sitting on his bed with him, he rubbed his feet and legs with a cold wet washcloth. As he did this, Chase raised his legs up and bent his knee in quick reponse. We were all very excited to see this, especially Tanner! We went for a log stroll in the skyway, and down to the second floor, with Ava proudly steering his ride safely through the halls. Gramma wanted to stay one more night with Chaser, so left left him in her caring and wounderful hands. Mom, I, and the kids are now at home winding down the night, getting ready to start another work week tomorrow. Have a great night. God is Good!"
 
tonight i am asking for good thoughts, prayers, and mojo for my friend crystal. she went in to see her dermatologist last week and the derm biopsied two moles that she was concerned about. crystal should get the results back this week, and as you all know, waiting on biopsy results sucks in a big way. although i am 100% confident that these biopsies will be clear, let's send her our good thoughts this week until those clean biopsies come back and we can breathe a big sigh of relief. i am so proud of her for going in to the derm to have them looked at, that's my girl;)
 
so tomorrow at 2:30 we get the ultrasound results from my oncologist. i would not be surprised if i hear the word "biopsy" tomorrow. i won't be surprised but won't be a big fan of if either, but i do want to know what the lump is and i want it out of my leg. i have to say that having a lump that you can feel is one of the most unnerving things i have experienced. so if a biopsy gets it out, count me in. thanks for all of the good vibes, mojo and prayers coming my way. i feel them and will carry them with me tomorrow into the appointment.
 
anywhere i go, you go. xoxo

Friday, May 17, 2013

hummingbird

we got to take malena to school this morning, and then headed to breakfast at our favorite spot. yum. so good. their motto is "eat like you give a damn" and what breakfast isn't good when you see those words on your tea mug?

when i layed down on the ultrasound table, i looked up and saw this hummingbird.

 
how awesome is that? i know, very awesome. i told the ultrasound tech that i really liked it and he said "i know, it is way better than plain ceiling tiles or those stupid tiles that try to make it look like you are outside when you obviously know you aren't." um hello, the ultrasound tech is clearly my new best friend. i felt like it may make him a little uncomfortable if i told him we were now best friends so i kept that part to myself;) i almost wanted to hug him when he said that, he also hates those stupid fake ceiling tiles!!! i immediately felt like it was a good sign for me that he was the one doing my ultrasound.
 
he let me watch the ultrasound, showed me my lymph nodes, etc. i saw the lump. it is pretty close to the surface. it doesn't seem to have any other lumps around it (i was worried the ultrasound would show other lumps that i hadn't been able to feel because they were deeper). it looks like the lump is solid because we could see that there are blood vessels within it, which would not occur if it was liquid only like a cyst. bummer, i was kind of hoping for a totally boring cyst as the outcome of all of this. but, i will take the location and the fact that it is not in area typical for lymph nodes as good signs. the radiologist is likely to recommend a biopsy or removal of the lump, we will see what my oncologist says on monday. if i have to have a biopsy, that will leave my left leg and my head as the only two parts of my body that will not have scars on them from biopsies. oh well, i will take a scar if it means the lump is out and it is totally benign.
 
after the ultrasound, we went down to the gift shop, and...wait for it, wait for it...they had my cinnamon bears!!!! another good sign. that also made me feel better, it kind of felt like i was on a good luck roll. here are the bears just before they were devoured, as you can tell from the look of my desk, work was a little busy today - ugh. even though sugar is not on my new eating plan, i made an exception for the bears - i decided the good mojo was worth a little nutrition detour. i know you feel the same way, and that is why i like you.
 


i got a text from my friends jill and josh today who live in stoughton, wisconsin. their town is celebrating the norwegian holiday of the 17th of may. at the canoe race tonight, look at what they saw!! a racer who was dressed as captain america!!:)
 
jill texted me the picture right away so that i could share it on the blog - another sign from chase that he is fighting hard!!!!!! we love the captain america sightings - so awesome. chase keeps sending out signs all across the country, no wonder he is tired at the end of each day and needs a good night's rest;)
 
here is today's update on our little warrior:
+++ "Six entire days without even a sighting of a Neurological storm! It seems like yesterday when our complete daily focus was trying to control and prevent these from happening, and now its hardly even mentioned in our conversations with the Dr and Nursing staff-With last night being the exception. Chase was schedualed for scope of his stomache this morning to check out how the ulcer looks and make sure it was healing. As I was lying with him on his bed last night, one of the Dr. from downstairs came to discuss the upcoming events , and to explain the risks involved in the morning. After discussing with him the risk vs gain, we decided to cancel the scope and let the signs and improvements we have seen in the last five days be our "sneek peek" into his belly. We didn't want take the unnecessary risks involved with putting Chase under general anesthesia to perform the procedure. Why mess with him when he has had the best 5 days, and clearly the most comfortable 5 days, since his accident. Mom and I know we made the right choice, and I guess the lack of discussion with us from the doctors backs this up. Chaser had another good evening with Mom. They both managed to get some good rest. Chase did some more stand up therapy this morning, and he once again fell asleep while upright, an obvious sign that he wasn't uncomfortable. During Psych T, he got his first smell of vinegar-Gramma Judy said he didn't like that one. He swinched his nose, and made a funny face with his lips puckering in disgust to the potent smell. I guess he didn't get those Canadian Genes from Gramma Dawn that dad got, we have sprinkled that stuff more times than I can count over french fries, and yumm! He went for a few walks with Gramma today- and managed to give her a smell of his own vinegar by having 2 very messy BM's! Way to go buddy, you keep that stuff away from Dad :) Overall, things have been going quite well for Chase over the last few days. Although Mom and I are still longing for a few BIG moves on Chasers side, we know they are coming, and we will take the baby steps and good days along the way. When I get discouraged at his slow progress, it takes one nose to nose touch, and one inhalation of Chasers warm breath, to remind me that the Big guy is here with us ....and so is Chase! Mom , Gramma and I seem to have a fairly good routine down for taking turns being with Chase and staying up here. The one thing Mom have come to realize in the past couple days, is we have 2 more precious little ones that need our time and energy as well. I pray that we find the ability, and energy to balance our efforts between the three of them. I have a buddy on his way to hang out for a bit tonight, and going to get Chaser up and take him for a stroll in his wheels. I am looking forward to another good night with Chase, and am thankful for all the 47 prior we have been blessed with. Thanks again to all of you for your support and overwhelming generosity. May your night be as good as ours is going to be. God is Good!"

 
i am looking forward to a good weekend. i intentionally plan to have it be a bit of a "f*ck cancer" weekend to let melanoma know it better not mess with me on monday. i might need to sport my shirt all weekend so that the message is very clear.


our weekend is going to include campouts + s'mores (which malena has already devoured for the night) + sleeping in (as you can imagine, sleep has been hard to come by this week, hoping to get some more rest this weekend) + fun in our craft room + swim lessons + a 4k walk with friends on sunday morning for a good cause + getting some fun mail ready to send + watching cartoons + eating lots of veggies and fruit + going fishing in our new little fish pond that malena felt she absolutely couldn't live without when we saw it at the store
we spent about 30 minutes fishing tonight on our back patio. super fun and we had a great time and some good laughs. i think that we both might be professionals after we get done, it is harder than it looks to get those little fish on the line (josh, we need your mad fishing skills;)).

i hope that you all have a great weekend - make the most of it. do something fun. give lots of hugs. give some extra kisses. say a couple extra i love you's. be thankful for the days. be brave. xoxo

Thursday, May 16, 2013

unexpected forecast change

"an arrow can only be shot by pulling it backward.
when life is dragging you back with difficulties,
it means it's going to launch you into something great.
so just focus, and keep aiming."
(unknown)

my goal for blue skies for the rest of this week hit a little big rough patch yesterday.

i found a small lump on my upper right thigh. not what i want to find on a blue sky kind of day. my hand happened to graze that part of my leg late in the afternoon and i felt the lump. i think that you could probably hear my heart hit the floor. i knew in less than a second that it was a lump, but i felt it again just to make sure that i wasn't dreaming having a nightmare. nightmare confirmed.

so i have an ultrasound friday morning at 9:30, results are monday at 2:30. i get to wait over the weekend for the results, you know i love hate that.

atleast with an ultrasound, i don't have to drink contrast. that is a little major bonus. i can keep my routine and take malena to school before i drive in to seattle for the appointment. double bonus. i get to have breakfast with barrett at one of our favorite breakfast spots right before the ultrasound. triple bonus. so minus the ultrasound and lump part, a good friday morning is ahead of me.

chase had a good day today as well, and is hopefully having sweet dreams while i am typing this post. here is the latest on our warrior:
+++ "Last night was a good night for all. Tanner's hockey team won their game and Chaser had a great night with Grandma. He slept peacefully with just getting up once with a dirty diaper. Sleeping 2 nights in a row, lets go for 3 tonight. Today has been a great day for therapy and all around for Chase. He seems to be very alert, esp with his eyes. He has been tracking alot. Chase had his favorite cartoon on today and as soon as Dad and I walked into the room and gave him a kiss hello, his eyes immediately made contact with us. What a greeting!!!! It melts my heart to know that he is really in there and he knows when we enter the room. I couldn't stop smiling :)

Chase had some visitors at PT today, Grandma and Grandpa Sheehan got a chance to see what it is all about. "Unbelievable" is all Grandpa could say. I think they were both impressed. Rehab runs like a well oiled machine and they all love Chase like he was one of their own. He did let out a loud cry that I haven't heard in quite sometime. I wasn't sure if I should be happy or sad about the cry. On one hand he is feeling the pain and that is good, It is a sense of normalicy but yet sad because I dont want to see my son in any kind of pain. Either way Chase made it through and there will be more pain to come. In Speech she pulled out Chase's favorite kind of yogurt, Yoplait Trix. Chase had a few baby swallows then she decided to give him a big boy bite. It took him awhile to swallow it all but he did it. So proud of him. Therapy has taken alot out of Chase today. He has been sleeping most of the night. I hope that doesn't mean he will be up all night. Wish me luck and here is to another fantastic day tomorrow.......God is Good!!!!!

Day 5.....storm free!!!!"


have a good friday all - thanks for all of the good energy. i am sure this lump will be nothing. right? right. that is what i keep telling my very scared self, and will tell myself that probably a trillion more times until 2:30 on monday. even though we all know it will be nothing, i figured that i could use all of your good mojo vibes to help make sure that is the case.

this picture shows what i am going to focus on when i am having the ultrasound tomorrow, my own blue skies instead of those damn ceiling tiles. i am aiming for a million more blue sky moments like this one. just like the quote, i am going to focus and aim. focus and aim. i need to make sure that i hit the bullseye on my life.



anywhere i go, you go. be brave. xoxo



Wednesday, May 15, 2013

blue skies


wherever there is her laughter and smile, there are blue skies for me.

Tuesday, May 14, 2013

black cloud

"dance as though no one is watching you, love as though you have never been hurt before, sing as though no one can hear you, live as though heaven is on earth."
(souza)
 
on saturday barrett and i went to the melanoma symposium. tons of good information on staging for melanoma, some updates on research and treatments, nutrition (i pretty much already have all of that down - yay!), and a patient panel. the patient panel is my most favorite part. this year there were four patients that shared their stories, ranging from stage i to stage iv. there were tears, laughs, and all possible emotions in between.
 
i could relate to all of them in one way or another. with melanoma being common between us, i think that everyone in the room could relate to their story in some way. one woman talked about how after she had surgery, she was pretty much physically recovered and was at the grocery story. a woman she hadn't seen in awhile came up to her and said "ooooooooh, hooooooow are yoooooouuuu" in a slow tone with a really worried look on her face. the woman said that at first she was like "why are you talking to me like that? why do you look like something is wrong with me?" and then remembered to herself, oh yeah - she heard that i was just diagnosed with stage iii cancer. she said that it threw her for a loop because she was having a normal day and "didn't have cancer that day." she said that she felt like telling the lady "oh sorry, today isn't a cancer day for me, but thank you for the good thoughts." i know that feeling - it is so nice to have those days or moments where cancer isn't at the forefront and you get to forget for awhile about the black beast.
 
the last session was supposed to be about hope. something went terribly wrong. instead of the speaker focusing on hope, she talked about death. for 45 incredibly long minutes. she talked about many aspects of it, including the verbal and physical signs that someone who is dying will give their loved ones to let them know that they are preparing to die. i am not going to go into any more details than that for clearly obvious reasons. it was hands down one of the worst 45 minute periods of my entire life. i think that barrett and i were in shock. we were in the very middle of the auditorium, if we had left, we would have been a big disruption to everyone in the session. i don't think that i would have cared, but i was so in my internal thoughts (is this really happening? what were they thinking? how could they expect cancer patients to sit through this? why do things like this unexpectedly happen to me with no time for me to prepare? why does it feel like the cancer fates are punishing me, don't they know that coming to this is hard enough on me?) that i didn't move. it was the absolute worst way the day could have ended for us. the. worst. way. possible.
 
those 45 minutes have been a black cloud hanging low over me since. i cannot shake it. i have cried everyday since, combination of a holiday (which always throws me for a loop regardless of how hard i try for it to not do that) and those 45 minutes. as i told my mom through tears tonight, i am having a hard time this week. the specifics that the woman talked about on saturday i just cannot get out of my head.
 
i am not a big fan of surprises related to anything associated with my cancer. it makes me feel caught off guard and unprotected. when i know what is coming, i can brace myself for it. like on saturday, after the symposium, we went to a family party. i saw people that i haven't seen for a while and so there were some of the "wow, you don't have long hair anymore" and "you are looking good, last time i saw you things were pretty tough and you weren't feeling well", etc. (all good intentioned). i knew that those conversations were likely to happen, so i had prepared myself for them. the sneak attack on the death talk left me feeling vulnerable because my guard was down and i was already super emotional about being there in the first place. i hate being vulnerable. i really, really hate that and i really, really hate being put in that position. i think that they are clear on that from the notes i left on my evaluation of the symposium.
 
i am so thankful that tomorrow is my rest day. i need time to heal up and get my feet back under me. i have got to shake off this black cloud and move on. i need to dry up the tears and get some laughter back.
 
so that is the plan. rest and regroup. rest and regroup. take some much needed deep breaths. look forward, not backwards - i am not going that way after all.
 
onward. tomorrow is full of an entire day of great memories just waiting to be made.
 
can't let those black clouds take over the forecast any longer.
 
i predict sunshine the rest of the week around here, and i will be wearing my sunscreen of course;)
 
speaking of sunshine, chase had a great day today and here is the latest update:
+++ "I walked into the hospital room to a refreshing sight. Lisa sitting on the couch laughing with her dad and that beautiful smile of hers in full bloom. Chase lay resting peacefully on his bed, eyes closed, with a calm, serene look on his face. Immediately, I know it had been a good day! As mom filled me on the days events, she had the energy back in her voice I was hoping to hear! They had indeed had a good night and day as well. Chaser sleep soundly for a few hours, waking up breifly for 30 mins, then sleeping until 5:30- when a messy BM forced them both to get up and start the day. He has accomplished some more firsts today. He had hiccups most of the morning, and snorted out a number of sneezes. Mom was excited to hear some more "normalcy" break loose from those lips of his. In therapy he was fed some more chocolate pudding with a baby spoon, that he swallowed down 6 times- mom said these were much bigger and obvious swallows then she had witness previously in therapy. He stood up in the Stander during PT, although he slept through most of it, he tolerated being in that position quite well. The Therapist added the Toot and burp piano to Chasers apps on the Ipad used for thearpy. We will have to wait for a reaction on that one, but for the time being, mom is sure having fun playing it! Mom and Chaser spent a couple hours out in the garden absorbing the welcomed heat of summer. This evening he and I spent a little time out in the garden with a family friend that came to visit, and about 20 mins in the skyway working on Dads favorite therapy - DT. Chase tolerated his leg braces for most of the day, and has remained Storm free for almost 3 days! Mom and I have agreed to keep our sights on the positives, as little as they are some days, and give Chaser as much positive reinforcement that we can.....and then dig a little deeper, and give him more. I am looking forward to a good restful evening, as Chase and I lay here awaiting tubby time- watching a little Deadliest Catch together. Have a good night. :) God is Good!"
 
happy wednesday peeps, i hope that it is blue skies where you are too. be brave. xoxo
 
 


Sunday, May 12, 2013

tape

"there is no way to be a perfect mother, and a million ways to be a good one."
(jill churchill)
 
 
i love this girl.
i love being her mom.
i love, love, loved reading this letter.
 
"my wish for you is this: that you often look for the tape. that you sometimes find the tape. and that you always be the tape."

malena, i love you more than you can ever imagine.
 
through all that we have been through, and all that we will go through....
you are always my tape.
 
i love you. xoxo

 

Friday, May 10, 2013

melanoma + moms + signs from chase

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

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

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

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

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

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

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

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

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

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

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


Wednesday, May 8, 2013

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