LIFE REARRANGED…

Eli continues to have good and bad days.  Being able to be outdoors has done wonders for him, so we’re thankful for the nicer weather.  He has treatment every 10 days currently.  He’s been having issues with the iodine/alcohol they use to clean his port/lines the last few times but this past treatment the smell actually caused him to dry heave and then vomit;(  He cannot stand the smell anymore.  This week they’re going to try having him wear a mask coated with his choice of lipsmaker chap stick; they have fun flavors/smells like root beer, watermelon, etc so please join us in prayer over this.  It’s proving to be quite anxiety provoking for him to the point he doesn’t want to go to clinic.  The nurses said this is pretty common at this point in the process as the children associate the smell with pain;/  Ugh;(  It just makes my heart ache.

His appetite is still pretty low.. he’s hanging in around 33lbs.  He’s in a yogurt and toast with butter phase; wish it was more, but I’ll take what I can get right now.

Nurse Ann gave him a sucker after he threw up to give him a new taste in his mouth.

The lake is really mucky right now from all the leaves that blew in during the fall but Eli and Keaton (neighbor) were traipsing through it like bulldozers!  Ewww….!

I was able to catch a sweet moment between Lexie and Eli while sharing a snack in the hammock;-)  Despite there being seven years between them, they are two peas in a pod in MANY ways!

Eli was able to get some lovin’ in with his fav lil’ pup, Ella!  She’s pretty spastic but calms right down when Eli hops up in the reflexology chair and stays put during his treatment time.  They shared a snack of mixed nuts;-)  And the second pic is of me coning his ears.  The oncologist said his ears were full of wax so he was excited to get his lil’ ears coned.  It’s very relaxing to him;-)

Kind of surprising to me but his counts are showing he’s neutropenic still (low blood counts= staying away from public places).  So we’ve been making fun in the quiet places of our lives;-)  Our awesome neighbors, the Pikals, made Eli an indoor kinetic sand tub back in the fall and it’s one of his favorite inside activities.  And TRAINS- oh Mona!- does this kid LOVE trains!!!  Apparently, Papa read him a book about a grandpa building a train track over the kitchen sink so that’s exactly what they did!  Eli, of course, didn’t want to take it apart so there may have been some bribing involved….

Eli received THE MOST CREATIVE package in the mail last week from his fav, Mr. Henry Keating;-)  Seriously, Keatings… awesome idea!!  We’ve never received a ball through the mail before;-)!

I have two favorite pics this time…. I was able to capture this sweet moment between Ms. Lisa and Eli.  He wasn’t feeling all that great on this particular day, so Ms. Lisa was loving on him;-)

And this beauty from my oldest beauty… Lexie has quite an artistic eye with photography these days;-)  She and Eli were enjoying some sibling time, chalking up the driveway.

Emmy’s soccer season began so we comprise her cheerleading section along with some rockin’ friends and family… and a cowbell, of course!  Is any sporting event complete without one?!?!  Jody would say definitely not!!  Lexie and Eli seemingly ate their way through the game last week so I clearly need to pack some yummies for this weekend!

I’m specifically feeling very weary and defeated… fear’s been creeping in here and there.  I’m worrying…. about his anxiety, his organs, his brain, a reoccurrence, learning disabilities from the chemo, and on and on.  There’ve been days with tears and feelings of overwhelming grief as we struggle to participate in treating our son in ways that don’t always feel right to us but are out of our control.  We could use prayer in this area, please and thanks;-)

“Sometimes, real superheroes live in the hearts of small children fighting big battles.” ~Anonymous

“Now glory be to God!  By His mighty power at work within us, He is able to accomplish infinitely more than we would ever dare to ask or hope.” Eph 3:20

Hello, all… a quick update on Eli;-)  We started Interim Maintenance a week ago today which entails chemo every 10 days ending May 6th.  The longer waits between treatments are enjoyed;-)  Eli’s appetite is starting to slowly return.  He’s lost a few pounds due to his complete lack of desire for food- argh!  He has no chunk-a-lunks to spare;(

~Getting finger poked and blood drawn to check his counts~

~Eli opening his gift from Mr & Mrs Carpenter; a FUN monster chain craft! Beaumont also gives the patients various beads for each component of their treatment (i.e. spinal tap, physical therapy, blood draws, chemo, etc.).  The final  pic is of Ms. Kayla passing out his beads.  At the end of treatment, Eli will have several hundred beads at which point we’ve been given some great ideas on how to incorporate them into a life/legacy project;-)  For my crafty friends, I will be begging for your help!  He enjoys picking out the fun beads and putting them into his special bead bag.~

Eli’s port covering was cute last week; the nurses always draw fun, appropriately themed pictures for him;-)  He also had another spinal tap, which doesn’t even phase him.  He was chillin’ on the iPad while waiting to be taken back.  The bottom right pic was his return from the spinal… they always take special care to tuck in whatever favorite stuffed animal was chosen to make the trip with him;-)  It’s the little kindnesses…

We always start at the Oncology Clinic, which is across the street from the main hospital, and on spinal tap days have to head over to the main hospital so I definitely get my steps in on those days!!;-)  After the spinals his little legs are a tad bit wobbly so the pediatric unit has much appreciated wagons to borrow.  We were happy to have Emily join us; she has such a compassionate, care giving heart…. maybe a future nurse??  She likes to dote over Eli on the days she’s able to come with us, which Eli LOVES!

~Heading back to clinic~

Back at clinic the Life Team makes their rounds with ALL kinds of crafts, toys, technological devices, etc.  Basically whatever will make the kids happy.  Last Monday they made ‘I Find’ bags with hair gel and all sorts of crafty items thrown in.  There was glitter and sequins EVERYWHERE!  Emily even talked Ibrahim, an 18 year old patient next to us, into making one- hysterical!  They were all having the time of their lives helping Ibrahim pick his colors;-)

We were fortunate that everyone in our family, as well as extended family, was healthy over Easter so had a fabulous time celebrating Jesus’ Resurrection at my Aunt Marsha’s home.  The weather was beautiful so the cousins were able to play outside in the fresh air!

~Snuggling with Aunt Marsha~

We swayed from our normal ‘follow the crazy yarn maze to your Easter basket’ this year in exchange for specific egg colored scavenger hunts;-)  The kids had mixed reviews as some prefer tradition over new-fangled ideas (LEXIE!!).  Emily added her touch by including Bible related questions that they had to answer in order to move on- loved that part!  Then off to an amazing church service we went!

My favorite pic over the last few weeks… Eli and his cousin, Ashton.  Ashton’s 15 and has the heart of Jesus.  He bleeds compassion.  He holds Eli when he’s just not feeling his best, plays with him, teaches him things, checks in on him and just generally loves him.  He’s patient and kind and funny, and, and, and…..  We’re very fortunate to have him in our family;-)

~Ashton and Eli after Good Friday service~

And last but not least, Eli and Emmy taking a swim break;-)

I’ll close with a sweet creation of Eli’s… makes my heart sing;-)

~Jesus on the cross~

“…just as Christ was raised from the dead by the glory of the Father, we too might walk in newness of life.” (Romans 6:4)

Please join us in continuing to pray over Eli’s health; that the treatment doesn’t damage anything outside of what it’s intended to kill.  THANK YOU;-)

“I will cause all things to ultimately work for your good.” Romans 8:28  Thank you, Hannah;-)