TOO TOXIC

Well, today was supposed to be the beginning of a new treatment phase but after running Eli’s levels/counts it was found that his liver enzymes were 23 times (!!!) the normal level, which makes getting chemo a no-go.  So ironic.. he’s too toxic to add more toxins;-)  Anyway, we were told to go home and let him rest a week but not this mama…  Can’t let my lil guy be that toxic so I made some calls;-)  I’m pulling out all my alternative/holistic roots!!  He’ll be receiving an ionic footbath and time in an infrared sauna on Wednesday as well as some reflexology on Friday.  We’ll see what his counts look like next Monday;-)  In all seriousness though, if you would pray for his levels to plummet, that’d be great!  If they don’t, he has to endure a TON of additional tests next week with the possibility of hospitalizing him again.

Entertaining himself while getting initial clinic assessment taken;-)

Otherwise all is well around Casa Medford.  Eli continues to have energy, play, do school work, etc.  His appetite is ok currently, which we’re thankful for.  We’re trying to keep life “normal” as much as possible for him as well as the rest of us.

We participated in making/delivering Thanksgiving baskets through our church on Saturday.  Eli was a trooper and stuffed one of the baskets all by himself and really wanted to tote it outside but it was a tad bit heavy;-)

We ended last week with no jackets and a final leaf patrol in the yard to snow gear and sleds (don’t have a snow pic yet)!  Kids are waiting impatiently for the ice to freeze so they can begin the skate-a-thons;-)

“Let the peace of Christ rule in your heart, since as members of one body you were called to peace.  And be thankful.” Colossians 3:15.

DISPLAYED

Well, we’re flying through the treatment phases;-)  Yesterday ended the four-week Consolidation Phase.  There’s not been much to talk about, thankfully.  Eli continues to do well and will be discharged from physical therapy on Friday!  His walking has been fully restored, we’ll continue to work on his core with at-home exercises and although he has general weakness (buckling his carseat, opening doors, etc) it’s being attributed to the chemo and there’s not a whole lot they can do about it.  Time will heal that too.

Getting measured at clinic

Next Monday begins the Interim Maintenance I phase, which will last for eight weeks.  Pro- he’ll go every 10 days between treatment and will have only one spinal tap!  Con- he’ll receive double chemo doses on those days.

A sweet friend sent a beautiful verse to me this week that really made my heart smile…”As he (Jesus) passed by, he saw a man blind from birth and his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”  Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.” ~John 9:1-3 (italics/bold mine).  Thank you, Amy Prange;)  We’ve always felt that Eli would have a strong story to share and through this occasion, God’s continuing to add to his life story and his faithfulness.  I’ve also been extremely touched by the song Storyteller by Morgan Harper Nichols.  It seriously brings me to tears!  The girls keep asking if there’re any other songs we can listen to….and I say “No!”  It’s hard to explain but I just feel like this tells Eli’s story right now and, again, just having a heart of thankfulness and praise for his prognosis 😉

Although this is a pithier blog, I’ll add one last picture….our fun friends, Nathan & Amy Carpenter, created a ‘chemo bag’ of wrapped gifts for Eli to chose from each Monday morning before heading to clinic.  Their hope was that Eli would find joy in unwrapping each gift that they so carefully chose and had a purpose in mind for.  He looks SO FORWARD to picking out his gift each week that he actually does it on Sunday and sticks it in his bag for the following day.  We video him opening it at clinic and then send it to the Carpenters as a thank you.  It’s just been a fun idea all around!

Until next week…;-)

SWEET DAYS

Life continues to pass by. A sense of normalcy & routine is here. Eli is doing well outside of not feeling like eating, which we were told to expect. Gone are the days filled with rice, ramen noodles, pizza & cheeseburgers!  Our days are filled with school & structure, fun & games.

   
Emmy & Eli playing with some planes;)

 
Monday was Eli’s third & final spinal tap for this phase.  He handled his port accessing/deaccessing like a champ as well as the spinal tap. Even clinic/hospital time is part of his normal now, which is a blessing. He didn’t appear to be anxious while we were heading down this week. 
   
We had the privilege of having Coach Craig over for lunch. He got loads of smiles & giggles out of Eli as well as helping Lexie with her science experiment homework. 

 
Thought I’d end this pithy entry with a cute video, taken by our friend Kevin, of Eli eating a sour patch kid candy;) Enjoy & thank you for your continued interceding on our family’s behalf😊

“A friend is always loyal, and a brother is born to help in time of need.” Proverbs 17:17

BEAUTIFUL DAYS

Eli’s had a great week overall.  Thank you for praying over him as God’s answering prayers in this area;-)  Eli asked to go trick-r-treating on Halloween so despite the cold, rainy weather, we hit the neighborhood with some neighbors.  His legs were strong and the lure of candy enticed him to keep up, for a while anyway, with the older neighbor kids!

Working hard at physical therapy, while dressed up as a muscle man!

Trick-r-treating at physical therapy with Ms. Terri;-) She required him to do LOTS of walking and bending to reach those desired treats!

Eli received his second of three spinal taps on Monday as well as chemo.  His demeanor changed as we drove into Beaumont… he got quiet and anxious and began asking questions about getting “poked”, “accessed” (his port), etc.  The nurses were kind, as always, and brought him a big, LOUD firetruck to try and keep his mind occupied while they were accessing his port.  I have to be honest, I’m not a big fan of the big gifts each week but I understand they want to keep a fun, Disneyland image of the clinic so the kids have fond images of being there… but seeing his sweet smile after receiving the toy melted my heart.  It’s such an instant gratification moment, but as a mom, it’s worth it right now!

Pure joy!… and another toy that may “lose” its batteries;-/

Eli’s not aware of the spinal taps as they put him under for these procedures so he’s been in a pretty happy mood before they wheel him away…

…But he’s very grumpy when he wakes up, understandably.  As I was struggling to leave the hospital, a kind worker brought me a wagon to chauffeur Eli around in.  I was carrying Eli, the firetruck, a large stuffed bear that he was also given, Eli’s special blankie, a hot tea and a messenger bag full of everything but the kitchen sink to keep him occupied during our Monday escapades.  Needless to say, I was very grateful for the wagon!  I felt so light, I could skip through the halls!

We were blessed to spend some time with our friends, Joey & Carla;-)  Eli was able to work in some snuggle time with Mrs. Link!

Overall, a slow uneventful week;-)  Life is good!

“Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.” 1 Thessalonians 5:16-18