Sunday, June 30, 2013

hello july + patty + chase

long time, no write.

it feels good to be back in this space. i have missed writing, so it feels good to have my fingers back on the keyboard.

we spent the greater portion of this last week in california at disneyland.

we had an awesome time. it was all i hoped for and more. more to come on that trip as well as the retreat.

this last week and a half have been exactly what i needed. time to catch my breath. it feels good to be breathing again, i really needed the break. the weeks leading into vacation were hectic and had me out of my new routine so i felt completely out of balance. i am looking forward to maintaining the balance again with work beginning tomorrow.

i can't believe that it is july tomorrow, here is a list of the things that i am focusing on for july:
+++ taking this class which i am really excited about as i know that it will get me to take more pictures in july than i would have otherwise. plus, i am sure that i will learn some cool tricks and apps as well. very fun.
+++ spending time outside each and every day, likely doing more sidewalk chalk art like malena and i did as a way to end our day today.

+++ flossing (don't tell my dentist, but june found me and floss parting ways and we need to reunite)
+++ making a ton of green smoothies
+++ trying some new recipes.

+++ jumping. i got a new trampoline because my nutrionist told me that the jumping motion can help to balance lymph nodes. so i am going to jump for a couple of minutes every day. look out lymph nodes, i am coming after you.
+++ continuing to document our life with pictures. i already have the pictures from our trip to disneyland in to the printer, so i will have those pictures in an album this week. i also got all of our pictures from 2012 printed so i am going to start that new album this month as well. proud of myself for working through my issues with pictures, loving how the albums are turning out.
+++ being ok with just doing a little each day. spending time in the yard keeping ahead of weeds. catching up on emails (if you have sent me one and haven't heard back, i got it - i appreciate it, and you will hear back from me. xo). making thank you cards (if you have sent me mail or done some other awesome thing for me, i got it - i appreciate it, and you will hear back from me. xo). a little progress each day, that is the goal, and that is going to be ok. being in progress versus being all caught up is a hard shift for me but i am working on it.
+++ being in bed by 10 (good thing tonight isn't july 1st or i would already be breaking this one). i have fell into an old/bad routine of not going to bed until late (aka 11pm or later), which doesn't help me or my body to feel rested. lights out. 10pm. no matter what.
+++ turning 38. more on that to come.
+++ spending time with family, including the sheehan clan in minnesota - kevin, you get the first hug (as long as no one is trying to throw water balloons at you;))

+++ doing a clean sweep of our house. if i don't love it, or we don't need it, it is going to the garage sale in august

+++ reading.
+++ spending time on my dream couch each day.

i am looking forward to july, it will be full of a ton of good things - including good scan results at the end of the month. right? right. glad we continue to agree on that.

i also want to ask for good thoughts for patty, her scans in the last week showed that her tumor is growing despite the chemotherapy she has been doing for the last 14 months. she will begin radiation therapy that may also be supplemented with additional chemotherapy.  her radiation therapy is scheduled to begin on july 8th and will last for approximately 6 weeks. please send your good vibes, mojo, and prayers to patty and her family as she takes on this new development in her fight. i know that tumor doesn't stand a chance with all of your good mojo, so i am sure that it is already shrinking as i type this.

i also wanted to give the last couple of updates on chase, as your good thoughts, mojo, and prayers are needed for him as well. here are the latest updates on our little warrior:
+++ Chaser had a great night with Gramma Judy last night. He slept through the night. His formula was shut off at 4am in preparation of his Mik-ey Tube insertion and his scope. Well, I received a call at 9:30am from one of his doctors apologizing and informing me that we can not do both procedures at the same time. I was a little upset, to say the least. We planned this over a week ago, and to find out hours before that it wasn't possible was very disturbing. Not only had we had him off his formula for hours, but I didn't understand why this hadn't been addressed and sorted out prior to the day of. So I called and expressed my aggravation with another doctor on staff. That doctor then arranged to have another surgeon to do the procedure at the scheduled time. While sitting in the prep room waiting for 2 o'clock to roll around, we met the various members of the surgical team. The surgeon began asking us questions about Chase and his history, and it became very clear that there was a major communication breakdown. She explained that she did not feel comfortable putting in the Mik-ey tube earlier than 3 months after the G-Tube placement- due to potential problems with the stomach, and possible damage that could occur. So once again, plans have changed. We decided not to do the scope of his stomach, because the surgeon did not feel that it was worth taking the risk just to see the inside. We had a good talk with the doctors on staff, expressed our frustration, and revised our game plan. As far as the Mik-ey goes, we are going to discuss in a couple weeks. The scope we are putting off until the Mik-ey surgery, unless the GI doctor feels he needs it sooner. We have switched formulas to a formula that is thinner, and hopefully he digests it easier. We are going to start bolus feeds in small amounts. Chaser just had a 30ml dose of formula, and is doing good. He is going to get another 30ml every half-hour as long as he tolerates it. Mom and I looking forward to putting this day behind us, ordering some pizza and hanging out with little dude tonight. Lisa's smile is still lighting up the room even after the crummy afternoon we had :) Have a great night. God is Good!
+++ Apparently all of the stress of yesterday wore little Chase out. He feel asleep last night around midnight and has been in and out of sleep since. After our journal yesterday, Chasers day went from bad to worse. We decided to try bolus feeding him with the new formula at 4 oclock to get some food in his stomach. After 2hrs with 60ml given to him, his nurse checked how much was left in his stomach. It turns out that most of it was still in there, meaning he had digested none. We suggested we go back to the old formula and deal with his vomiting issue after he had a good run of formula in his stomach. He may been bringing it up, but atleast he was able to digest some of it. Fortunately, our gut was right. Pardon the pun :) He tolerated 60ml an hour until noon today- then we switched back to the lighter formula. He spent most of the night crying and was clearly very uncomfortable. He has had a couple dipers with some unknown discharge in them, so we asked if they would take a sample and test to see if Chase had an infection or a UTI. The lab results showed some slightly elevated white blood cells, which means that something isnt right. So they put him on an antibotic last night, and ordered a culture. Hopefully the results come back with answers. This could possibly be the reason for his discomfort. Mom was in therapy with him alll day. He slept through all of it, making the therpists and mom burst out in laughter as he snored during pool therapy! I think a full day of rest is good for Chaser, man what I wouldn't give too have a day that I could sleep through! Gramma Judy switched places with Lisa so we could have a night at home with the other two. We took them and Tanners buddy Ben to Valley Fair to get our guts turning- after riding on Renagade, I think I know how Chaser feels. Judy just called with a nightly report - very excited. She said she saw the sheets moving, pulled them back, and Chaser was moving his feet and toes!! He has moved them before, but it was a reaction to being tickled or curling them in discomfort- but never just for the heck of it. Go Chase! The nurse just did another check on how much food was in his stomach and found NOTHING..he is digesting everything. We are both ending this night with a Big smile on our face. We are looking forward to our day and overnight pass tomorrow with Chase. Have a great night. I know we will. God is Good!
+++ As I am cleaning up the house and packing up Chase's stuff to go back to the hospital, I realize that reality is kicking back in. Returning to our home away from home. Chase is due back before 8:00 pm for his nightly dose of meds. We are still scheduled to be discharged on the 5th but I really don't foresee that happening, especially with this week being a holiday week. I think it might be the following friday the 12th. But that is okay, don't get me wrong I would love to be out of there this week but having another week would mean more therapy, more playing around with meds and still trying to figure out the formula and throwing up issue. Chase's overnight pass went fairly well last night. We got to enjoy Tanner's year end hockey party which was at a pool so the kids swam and the adults played bean bags. The moms took turns holding Chase for the 2 hours that we were there. I don't know who enjoyed it more Chase or the moms. After the party we went home and enjoyed our traditional walk around the block. Not sure if it is for the socializing or if it is for the excerise. I think a little of both. Chase was so tired that he fell asleep right after the walk. He enjoyed sleeping in his new room. We still need to do a couple more things to it but it is turning out quite nicely. It has the Captain America theme of course!! I slept right next to him on a air matress while Chris, Tanner and Ava were in the TV room. We couldnt all fit in Chase"s room so we thought that was the best scenerio. Chase was up a couple of times with some good solid coughs. He had swallowed everything he had tried to bring up which is very good. Yesterday we tired the bolus feeds and so far so good. His tummy has been tolerating it. Today he has had a few episodes of throwing up but overall not bad. We are so proud of him. He is working so hard. Tomorrow is another new day and more experimenting with the bolus feeds. I hope everyone enjoyed their weekend as much as we did. Off to the hospital...."

thanks again to everyone who is participating in the fun mail for chase, ava, and tanner - the fun mail keeps going to them every week which is so awesome.

happy july everyone, i hope that your month gets off to a great start. xo

Sunday, June 23, 2013


as i was driving home this morning, drinking a huge green tea and listening to my favorite music, i was thinking about my story. thinking about truly embracing my story, the good and the bad. i will have much more to share about the retreat in this space in the future. but not tonight, tonight i am tired (the best kind of tired due to joy overload) and am transitioning from one adventure to the next.

i am going to be off the blog again for a few days creating new parts my story, and i know they are going to be some of the happiest pieces yet.

anywhere i go, you go. xo

Friday, June 21, 2013

jump for joy

today was another great day.

a little bit of sleeping in - snoozing the alarm four times before actually crawling out of bed.

great breakfast.

awesome conversation with a new friend during a car ride down to manzanita.

getting to spend a good part of my day drawing and painting with watercolors. big love.

long walk on the new beach with a new friend, talking about life and the choices we make. taking the risk to exchange good enough for a chance at great, and hoping like hell you made the right choice. realizing that the risk is worth it, because deep down you really know that you deserve more than good enough. everyone does.
finding some more love in the sand, knowing that love is all around you. you just have to look for it.
evening walk on the beach on the longest day of the year.

jumping as the sun goes down. because i can. because i am living. because i have so much to be thankful for. because i am breathing. because i am getting in pictures.

anywhere i jump, you jump;) xoxo

Thursday, June 20, 2013


i have caught my breath.

it feels good.

coming to this retreat is one of the very best things that i have ever done for myself. hands down. ever.

i have had the chance to really listen to myself and how i am feeling.

i have been able to give a voice to some things that i felt like i have needed to say. damn, it felt good to get those words out. i felt lighter the second the words left my mouth.

i have made new friends, ones i expect i will be friends with for a long time. i love when you meet someone and you kind of feel like you have always been friends with them but you just weren't in the same space until that particular moment.

i have been able to identify with the words other women share, parts of their stories that are like a piece of my own.

i have taken my first self-portrait using a self-timer on my phone. i then took more after that. i got in the picture.

i have found some pieces of self love on the beach. one a shell that looks like a heart that has some pieces missing, i could relate to that. a little acknowledgement that my heart has taken some hits but it is still pumping. one a shell that looks like a heart that is whole, i could relate to that. a little hope that healing will keep happening each and every day.

i have ate amazing, nourishing food.

i have drank green tea in an awesome new mug, and realized that i couldn't remember the last time that drinking green tea was the main activity i was focusing on with my time.

i have put my feet in the ocean, and let some of my grief get carried out with the tide.
i have had a chance to just slow down and take in the beauty around me.

i have had great conversations.

i have shed tears.

i have laughed.

i have hugged.

i have said "me too".

i have said thank you.

i have shared spaced with other women whose lives were altered by cancer, one of whom had stage i melanoma and also knows the routine of going to the dermatologist every six months.

i have shared the words that only women affected by cancer can know, how it feels, how it hurts, how your life is changed, how you grieve, how you lose the ability to make key choices - like having other childen. how having baby things in your house makes your heart break in a million pieces, but so does the thought of finally coming to terms with the fact you will never need those things again. trying to decide which of the two heartaches is the easier to endure.

i have been told i am brave.

i have felt brave.

i have felt safe.

i have been calmer than i have been in a long time.
i hope that you too will give yourself a chance to catch your breath this weekend. 

it feels really good.

trust me.

i now know.

anywhere i go, you go. xoxo

Tuesday, June 18, 2013


i have not caught my breath, don't expect to until i am on my way to oregon tomorrow.

in the meantime, i wanted to share the latest with chase:
+++ to see a local news story on him, click here:

also, here are some of the recent updates:
+++ "Chaser had a challenging day today. This morning he brought up most of his formula a couple times. It is apparent that the low PH level in his stomach is making it hard for him to digest the formula. With him not handling the feeds through his G-tube, and his J-tube pulled out of position, he went without any formula or meds most of the day. Regions finally squeezed him into the IR room to get his J-tube put back into place. Chase did really well. The procedure took about 10mins, but he was laying on the stiff surgical table, in the cold sterile room for about 45mins. We were worried his storms may resurface because of the low PH, lack of medicine, and stress- but nope- still storm free! He was pretty inactive in most of his therapy sessions today, except for the one I got to attend. In PT/OT the gals wanted to show me his tongue trick. So they asked him to stick his tongue out for me, it took a couple of times, but he managed to poke it out slightly for me. It was so cool to see him do that. He used to stick it out all the time at me and I would try and grab it. One of the many little parts of his awesome personality I am looking forward to seeing again some day! Tomorrow afternoon he is going back to surgery to have the g-tube/j-tube mess we have been dealing with replaced with a Mic-key button. This is a lower profile, easier to use feeding port. Although they have to put him under sedation, they have assured us it is simple procedure, with very minimal risk. Even though he has clearly been uncomfortable all day, with the exception of a few moans, and a little tension in his tone, Chaser has managed to remain in a good mood. Mom and I just came in from a walk outside, and a quick game of PIG. Being the gentleman I am, I let her win again :) - ok so maybe basketball isn't my sport..... I guess we will see you at 10 o'clock on channel 11- or should I say you will see us. Have a great night - God is good!"          
+++ "Today is the first day I have been home a full day since the kids have been out of school. Grandma Sheehan stayed at the hospital with Chase so I could get some things done around the house. I have forgotten how busy summer break can be with kids running in and out of the house, driving kids to camp or golf lessons, "mom can I have a popsicle?" for the third time, and wet swim suits. But something is little boy. It just doesn't seem right. With all the noise going on in the neighborhood it is quite in the house. It is crazy how the spirit of a four year old can create a mood. I just really miss his laugh. Summer was Chase's favorite time of the year. Riding his bike, Valley Fair, popsicle's, riding his motorized 4 wheeler, looking at birds and trying to catch them, playing shark boy and lava girl on the swing set with Chloe and Emily and just being a typical boy. Instead he is laying in a hospital bed, just makes me sad! It is going to be a totally different kind of summer. One with new adventures and new beginnings. I am excited to get Chase home. A new summer is going to happen and we are going to make the best of this situation. Chase deserves it!!!!
Chase had an okay day. We are still messing around with his meds to figure out the right dosage. His PH has dropped again to 3.6 so we have added a another med to increase it. We added his vest treatment into his daily routine again. Chase is sounding a bit congested with fluid build up in his throat. The doctors are holding off on a chest extra until tomorrow, hoping this will all clear up. We are also waiting for a mickey button that was ordered so we can finally get rid of the J tube and just have the G. So hopefully tomorrow will be the day and we can get rid of that. We are worried about the surgery because he has to be put under but it is necessary to do in order for him to come home. I am looking forward to going to the hospital tomorrow. I miss him, not only does Chase get his daily therapy but it is good therapy for me too. I get to see all of Chase's hard work and it re-energizes me. Tomorrow night our little boy will show his face on TV. Kare 11 will air it's piece they did on Chase and our family at 10:00 on the extra. Stay tuned......."

thanks for all of the continued good vibes that you are sending to chase.

i will be back in touch after i catch my breath. xoxo

Sunday, June 16, 2013

catching my breath

long time, no write.

life has been crazy busy this week for a ton of different reasons which i am too tired and too exhausted to write about.

i am looking forward to the vacation that i have coming up. wednesday is my first day off, and it currently feels like it is a lifetime away due to how much work i have to get done between now and then. but, i will get there, i will shut my blackberry off, i will leave work behind for a week and a half. i can't wait.

i need to catch my breath.

for a couple of weeks now, i have felt like i can't catch it no matter how hard i try. i just can't catch up.

i think the lump in my leg shook me up even more than i knew at the time. it has been tougher to bounce back than i expected.

i am very much looking forward to the "your story" retreat that i am going to this week on wednesday. a chance to focus on being present and hopefully finding ways to continue to embrace my story. my story. the one with a twist that i never saw coming. the twist that i have a hard time carrying. the twist i would love to put down and walk away from. forever. and ever.

on wednesday i will head towards the coast.

as noted in my packet, "i come to the sea to let go of what no longer serves me as i ask her to take pieces of grief and all that will not be out with the tide. i imagine all of it tumbling with shell fragments and driftwood until it entwines with the seaweed that sways farther than i can see. i come to the sea to remember me..."

i am looking forward to leaving some pieces of grief behind.

wednesday, you can't get here soon enough. please hurry up, i am waiting on you.

Tuesday, June 11, 2013

in the clear

all went well at the derm.

stitches out.

no biopsies.

in and out in 15 minutes, my favorite kind of appointment.

thanks for all of the good vibes and mojo - it worked! huge relief.

also, as always, please continue to send good vibes and mojo to chase, here is the latest on our little warrior and the benefit that occurred for him over the weekend:

+++ "It was a chilly, rainy start to the day yesterday, as the 36 foursomes teed off at the wilds at 12:30. The weather may have dampened the golfers, but sure did not put a damper on the spirit of the scramble. Andrew and I did our best to make the rounds and hit a ball or two with all the golfers. Everyone seemed to be having a good time, and I'm sure they felt much better about their game after witnessing my hack of a swing in person :) Midway through the day, just as the majority of our friends started arriving, the weather cleared up and the sun peeked its head out to brighten the day. Wow, what a turnout! As Lisa and I took the front stage to say a few words to our guests, we were absolutely amazed at how many smiling faces were looking back at us. It was much different than when I stood ther almost 11 years ago- the day our lifes were joined together in marriage. Yesterday there may have twice as many people in the room, but we definately felt more comfortable than we did the day we had our wedding reception in that same spot. We had a huge secret we had been keeping for some
time, that we finally got to tell, or should i say show. Chaser was
escorted into the room, and you could have heard a pin drop. I had
requested the room stay quiet, as we didnt know how he would react.
It was amazing to have 500 + people in the room and not even hear a
cough! And when they raised their glasses as Chaser exited, was priceless. You people are Awesome!!!... Chase did so good. I think he
was a little nervous, as were mom and dad, but he managed to
squeeze a little smile out. It felt really good to let people see how their
thoughts and prayers had been answered in person. After a couple
mins lisa and I took Chase for a walk in the parking lot, and then
buckled him in, and back to the hospital he went. It was sad to see him
go back to the hospital, but we know the future holds much more time
with him in public. Lisa and I, releaved and much calmer, went in and
enjoyed the rest of the incrediable evening. The scale to which people
gave-auction items, donations, thought, time, and energy to make this
night as great as it was, was off the charts. Thank you to all who
attended, donated, prepped, and had anything to do with the benifit.
We felt the love and support from all.
Chaser was worn out today from his feild trip yesterday.Therapy was a little uneventful, as he slpt through a few of the sessions. Gramma Judy is up with him tonight. They took a nice stroll outside, while Chase got to feel the warm of the above 60 breeze in his face. He continues to handle all of his meds and formula being given to him directly into his stomache through his G Tube. He is up to 55ml/hr of formula, hopefully going up to 65 tomorrow, as long as he keeps it down. We are looking forward to a good strong week of progress. Thanks again to all you for your constant support! have a great nigh. God is Good!"

happy wednesday all - make it a good one. xoxo

Monday, June 10, 2013

stitches out + good vibes

tomorrow is derm time for two reasons.

first, i get my stitches out. i will be pretty happy to not have to deal with my stitches every morning by putting my medicine and bandages on them. i will also be pretty happy to be able to have full use of my leg without worrying that i am going to rip the stitches out.

second, i have my 6 month check up with my derm. let's hope that all goes well and no biopsies are needed.

i will be one bummed chica if i get some stitches out to only get new ones put in.

send me your good vibes and mojo at 4pm tomorrow.

anywhere i go, you go. xoxo

Sunday, June 9, 2013

weekend, you rocked

this weekend rocked, it included:

+++ a friday afternoon off from work with my friend kerry, including an awesome lunch, some shopping, and facials. perfect way to kick off the weekend.
+++ girl date night with my friend michelle at ipic in redmond. i have to say that watching a good movie, while sitting in a recliner, with a blanket, eating popcorn and drinking reisling (yes, it has sugar, and yes, it tasted damn good, and yes, once in a very rare while i give myself a little treat, and yes, i agree with you - i deserve it), is really the only way to see a movie. unless we have our kids with us, i am pretty sure that all of our movie dates will now be at that location. so fun. btw, if you are looking for a good movie, we thought that great gatsby was fantastic.
+++ watching my nephew graduate from cwu. so proud of him, he has done an awesome job and i can't wait to see where life takes him and his little man isidro. a saturday focused on a huge family milestone surrounded by my immediate family. loved it.

+++ today was the shore walk 5k to raise funds for fred hutchinson cancer center. the third annual event for our team "alli's angels" which continues to grow each year. this year we were 32 strong, including some team members that got to ride in backpacks and strollers. it is so great to be surrounded by so many family members and friends for this annual tradition. it is also always a little bittersweet and tough for me, for the same reasons it is every year. because we would likely not be walking if it wasn't for my cancer (not that raising funds for cancer research in general wouldn't be a cause that we wouldn't otherwise support). because it is an annual event, and anything that happens only once a year makes me very anxious thinking about the next year. because although i am so glad that we do it, part of me wishes that we didn't have to. because i wish that no one had to walk to raise funds for cancer research, because i wish that cancer didn't exist at all. because i hate cancer. because i hate that i share my life with, and that my friends and family do as well.

but all of those reasons that make it a bit bitter don't stand a chance against the 32 people that make it sweet. they are what i choose to focus on. i love my team, they look pretty great don't they? yep, they look that good in person too, even at 7:15am.


malena got the supreme stroller treatment for this 5k, but i think that next year we are going to make her be a walker and she can push us in a stroller;)
 barrett and i crossing the starting line

 our team is on their way

chris and noel carrying two of our little team members on their backs, and my sister and i goofing around taking pictures of each other
 making our way along the lake
 on the home run stretch
 crossing the finish line
the rest of our sunday was spent having some lunch at chicken robin, s'mores blizzards at dairy queen, naps, yard work, finishing printing off our 2012 pics (yay - look out 2012 album, here i come!), and down time reading. perfect way to close out the weekend.

i hope that you all chose to do something special this weekend.

happy monday, here we go again.

Thursday, June 6, 2013

i choose

hello friday. good to see you. you are looking pretty good, compliment intended.

i have spent time this week really focusing on the words "i choose". thinking about the choices that i make with how i spend my time. i am trying to calm my anxiety about feeling like i have a million things that i want/need to do, with never enough time. i have felt this way since my original diagnosis, and at times it is worse than others. these three month stretches in between scans are the worst it has ever been.

so i am trying really hard to think about choices.

i choose to take an afternoon off work to spend time with a favorite friend.

i choose to leave work on time to maximize time with malena and barrett.

i choose to make it a priority to get all of our pictures from 2012 printed (i am 3/4 of the way there - proud of myself) so i can get them into an album.

i choose to set time aside every week to keep our 2013 photo album up to speed.

i choose to give myself some slack that i don't get thank you cards out immediately. if you know me well, you know that i am a big thank-you-card-sender-outer. not sending them out in close proximity to the kindness i am thanking someone for really, really bothers me. i choose to focus on the fact that acknowledging the kindness is the priority, how fast it gets there is not.

i choose to put my phone and blackberry down and play. no phones. no tv. just me and malena playing restaurant and beauty salon.

i choose to put myself in the picture, so that malena has a lot of pictures of the two of us. selfies like the one above are our current favorite.

i choose to take it easy on myself when i am just too tired to put the effort in to making a green smoothie.

i choose to eat a piece of chocolate when i feel like it.

i choose to make time for date nights.

i choose to not read melanoma related information on blogs or facebook when i know that it will upset me. i choose to not feel guilty for sometimes not being able to read about the stories of people who have finished their fight with melanoma. i choose to know in my heart that their story matters, and it is ok that on those particular days i just can't carry their story in addition to my own.

i choose to focus on the fact that i love our home, and if there are times where there are some socks on the floor for no particular reason and laundry waiting to be done, they are signs that we are living in this space. i choose to remember that socks will always get picked up and the laundry will always gets done.

i choose to remember that it is ok to sometimes do something by myself for myself. it is ok. it really is. i choose to not feel guilty about it.

i choose to give more hugs.

i choose to say more i love you's.

i choose to continue to send good karma to chase:
+++ "Last night I had some of my girlfriends up for a girls night with pizza and laughs but clearly Chase had nothing to do with it. He fell asleep at 5 o'clock woke up for a brief moment for a tubby and fell right back to sleep. He didn't even get to show off to the girls all the new things he has learned to do. I was alittle disappointed but what can you do, when your tired your tired. I guess it is good, he needs his sleep, his brain has been working nonstop. However he did wake up at 4 am (so I was told, mom was still sleeping) and stayed awake all day except for a brief nap during rest time. His full night sleep did him well........He had a great day of PT,OT, and speech. In OT the therapist hooked Chase up to the E-stem machine. They put it on his biceps to stimulate the muscle for movement. It worked and Chase tolerated it well. They even hooked it up to me so I could feel what Chase feels. It felt weird. It doesn't hurt it just pulsates. You have no control of the movements. There are different levels of intensity. They cranked it up for me but kept it at a moderate level for Chase. I told the therapists "no pain no gain" Right? Ha!!!!! In speech it was dinner time and you could tell, Chase was swallowing like crazy. He had his favorite strawberry (pink as Chase would call it) applesauce. In PT Chase had to show off to mom like he did for dad yesterday. He kicked over all the bowling pins. Truly amazing how the therapists can get Chase to do what he does. These people are fantastic. They love Chase like he is one of their own. I can honestly say we have made some great friends through all of this. Although we are excited to go home I am going to miss the nurses, therapists and all the workers at Gillette. We have come so close with these people. Everyone is so friendly, we can't even walk down the hall without stopping to talk to someone. It is a great feeling!!!! I know Chase feels the love just like mom and dad do.

We did have a scare last night. His J tube was clogged from one of his meds. That means he didn't get his feeds through his J but he was still getting his small amount through the G. The doctors met this am and decided to start putting all of his meds into the G to see how his stomach can tolerate it. So far so good. He did great all day with the meds. They also decided since the J was clogged and wouldn't be fixed until later in the afternoon why not take advantage of it and also increase the amount of feeds into his G, since he was tolerating the meds why not increase the formula. He had been doing great all day until tonight. He threw up twice now. Too much too soon. We are not giving up just slowing down a tad bit. His J is fixed now so we will continue to use it and give his stomach a break and start up again in the morning."

i choose to be grateful for each and every day.

i choose to ignore that clock that is ticking in my brain towards 7/29 and 7/30.

i choose life.

happy weekend peeps.

friday, saturday, sunday.

you choose.

something that makes your heart happy. xoxo

Monday, June 3, 2013

june manifesto

the email came today.

scans on july 29th, results on july 30th.

so let's see, that was about a three day break after getting the results that the lump wasn't melanoma...and the countdown begins again. ugh.

i knew the email was going to come soon, but i was kind of loving not knowing. knowing the specific dates makes me feel like the clock is ticking down, counting every second towards those big looming dates.

i am going to do a little ticking of my own. but instead of the ticking of clock hands, i am going to start ticking things off of my june manifesto list.

here is the list of fun things that i am going do in june...
+++ watch my nephew graduate college
+++ go on date nights
+++ eat dinner outside on our patio every night the weather allows
+++ feel my feet in the grass when we play
+++ start the album of pictures from 2012
+++ read books, i am almost done with the rules of inheritance and you know that i am going to write a post about it
+++ tell my story
+++ go to disneyland (sssshhh...don't tell malena, it is our little secret)
+++ buy a small trampoline, my nutrionist told me that jumping on a trampoline can help to balance lymph nodes so you know that i am trying it, need to give those lymph nodes in my chest that are abnormal all of the balancing that they can get
+++ climb
+++ drink lots of green juice
+++ try new recipes each week
+++ do our annual shore walk
+++ celebrate dads
+++ spend time in my craft room
+++ drinks tons of water
+++ go on walks
+++ send fun mail
+++ go live the day, every single day
+++ see my bf when he and his awesome wife rally home from wi

so take that july 29th and 30th.

here are a couple of things that i have loved:
+++ this post called worst end of school year mom ever was hilarious. hilarious. hilarious. hilarious.
+++ i am a sucker for list of cool links, here is a great one from kelly rae roberts full of good links
+++ i was a sucker for this list too and some of you moms might want to check out the idea book for keeping your kids entertained in the summer;)

here is the update on chaser for today - go chase go, go chase go.
+++ "I think I have to clarify something. Chase is not home for good. We got a day pass yesterday from the hospital so we were home for just a couple of hours. It was so nice to have him home even if it was just for just a short period of time. Bringing him back to the hospital was the hard part. But we both know it is just for a matter of time when he will be back for good and we will be a whole once again. Looking forward to that day but also alittle anxious. I have no doubt in my mind that we can do this and we will be great parents to Chase but medically can we do this. Will we know when something is wrong with him? What do we do when something does happen? Just alot of questions that are unanswered right now.

Today was the start of the remodel. The construction workers were here at 8 am ready to start on Chase's room. We are turning our office on the main level into his bedroom. We are just making it alittle bigger so there some extra room for the needs of Chase. It is making me sweat some. I am not one for change and man is this a big one. Some reality is sinking in. So much is happening in such a small amount of time. Not sure how to deal with it, except to just keep moving forward and take every situation as it comes. We also interviewed some agencies for PCA, Personal Care Assistance. Went very well. We are just waiting on the county to assest our situation and give us the number of hours they feel we need.

Chase had a great night last night with Grandma Sheehan. I am sure he was just exhausted from his outing and all that fresh air. That prepped him for his big day of therapy and that is exactly what that was, a big day. One of his therapist had been gone for a week and a half on vacation and her first day back was today. She was very pleased with all the swallowing he was doing and how much he has changed in just that short amount of time. His eye movements and how much he is playing around with his mouth and tongue. Today Chase especially liked strawberry applesauce. I know that is his favorite, he would always remind me to get the pink kind not the yellow applesauce. :) In PT he was on his hands and knees, not on his own of course with a pillow in between. This is the first step in our goal to teach him how to crawl. He handled it very well. Excited for another big day of therapy tomorrow and hopefully some new firsts........until tomorrow!"

happy tuesday peeps, make it a good one. as mike would say, go live the day. some great things can happen on tuesdays. you just need to make them happen. i know you can. xoxo

Sunday, June 2, 2013

relay for life

i made it down to aberdeen just in time for the survivor lap to start the relay, made it with only minutes to spare. my awesome brother even parked my car for me so that we could make sure that i had enough time to make it onto the track.

i walked the first half of the survivor lap with just my dad which was perfect, holding his hand while we walked and let some tears fall.

about half way around the track we were joined by our friends sharon and her husband roland. sharon has been friends with my mom since they were kids. roland has been cancer free for over 20 years, sharon has been cancer free almost 5 years, and my dad has been cancer for 6 years. they are all good mojo for me;) we were cheered on by my family, and my mom joined us for the last half of the survivor lap which was also perfect. she too has survived cancer through all me and my dad have gone through.

it is a mix of emotions to see how many survivors walk that first lap. in some ways it is comforting to see so many people that have survived and are kicking cancer's ass. in some ways it is sad to see how many people have had to fight cancer. it in some ways it makes me angry that any of us had to walk that lap at all., or that relays for life are still needed to help raise funds for cures for cancer. but like the sign says, there's no finish until we find a cure. so we walk on.
my parents had a luminary made in my honor, and it was one of the ones that helped to form the bottom of the "o" in "hope" that was formed in the stadium. the candles in the luminaries are all lit at night so that the walkers during the night are reminded of hope. i liked that my name was up there keeping them company as they walked.

i had been thinking about going to the relay all year, and honestly had mixed emotions about it. part of me thought that it would just be too overwhelming for me. part of me thought that it would put me back a few steps mentally. part of me thought that it would give me a little kick in the rear to keep on the fight.

chaser is also continuing his fight and made a big step today with a field visit home, here is the update:
+++ "I would have to search my memory bank pretty deep to remember a time that I felt nervous, anxious, excited, and thankful to have all three kids in the car at the same time...other than today! Chaser took a field trip today. It must have been a pretty humerous sight to watch Lisa and I load Chaser into the van this afternoon. It has been a few years since I have had to pick him up and put him in the car seat. As our nurse watched me load his limp, fragile body into the new car seat, Lisa crawled in from the other end, to make sure I was doing it right, and to lend a hand in straping him in. As we scooted his torsal up to make sure the straps held his chest in tight, his little head would fall forward because of his weak neck muscles. After a little positioning, we got him just right, so we headed out the parking ramp. When we got to the bottom, the nurse called Lisas cell phone, we forgot to grab the suction machine. Man, we ever going to get Chase out of this place?! So we re-entered the ramp, drove back to the forth floor, where a nurse was waiting with our little duffle bag. It seemed like it took forever, but we finally got on 35E heading south. Then it hit us. Wow! Chaser is in the car sitting next to us, looking around, breathing on his own- heading home! When we got to the neighborhood it really hit us. As we looked at all of the Captian Chase signs in peoples windows and on the mailboxes, it felt SOOO good to be home. We pulled into the driveway and we were greated by family waiting to see Chase. His good buddy Daulton was the first to pop in the van and greet him. Chase didnt have too much of a reaction, but Daultons smile never looked so big. We brought him and layed him on a blanket on the floor. The family and freinds that stopped by took turns hanging out next to him for an hour or so, while I spent most of the time watching soaking up the moment. After nurse-mom lisa gave him his meds, we loaded him in his jeep stroller, threw his top gun shades on him, and walked around the block. When we made the turn around the culdesac as Jim and I were chatting, we stopped for a moment to wait for Lisa, gramma and the kids. As I looked back at my wife walking Chasers puppy Carly, she looked relaxed, happy....normal. That is when I realized, we can do this! I know we can make this work!
The last couple days Chase has continued to handle getting his formula in both his J and G tube. Storms still remain nonexistant. When I asked the Dr if was normal for the storms to just disappear, he said it was highly unusual that ever happens, and with a smile acknowledged that it was happening, and again commented that he was very happy with Chases progress. Chase continues to move forward. We have noticed he is moving his eyes much more, both side to side, and up and down. He continues to crack slight smiles for us. Today was a good trial run for whats to come. We are all looking forward to the next one. It can't come soon enough. Have a great night. God is Good!! :)"

as my friend mike said today,"go live the day" and that is exactly what we did with the rest of our weekend. camping out + sleeping in + cartoons + gymnastics + park time + lunch at "chicken robin" (malena's pick of course) + library time + swim lessons + time in our craft room + new haircut for malena + celebrating papa mike's bday and early dad's day + good food made by my mom-in-law + tons of laughs, hugs, smiles, kisses + putting pictures into our 2013 album + baseball in our backyard on a gorgeous sunday night.

go live the day, i plan to do that every single day in june and july.

i hope you plan to do the same. xoxo