Desperate!!

We have now been "waiting" for Jax's fever to go away for one week and instead of things getting better they have gotten worse.   For the last few days throughout the day and night Jax has consistently had a fever every four hours. It's beyond words to see your son struggle and there be nothing you can do and the team of doctors pretty much having no answers except to say that Jax has a "cold" (viral infection).  Our head doctor did explain that because of all of Jax's treatments in China Jax's bone marrow has taken a beating which is why Jax is struggling as much as he is.  That does make sense to my brain. We need Jesus to desparately do His thing and heal whatever is going on with Jax's little body.

Simultaneously we have been waiting for Jax's white blood cells to start climbing, any kind of climb or movement would work.  They have been at zero for two weeks.  Initially it was that we would not be released until the counts went up, now it's that we won't start the next round of inpatient chemo until the counts go up.  They have to get to a certain level which once it "starts" climbing takes 2-3 days.  Inpatient chemo takes 4 days.  We desparately need Jesus to intervene with Jax's white blood cells.

Soooo, because Jax has a "cold" (coughs a couple of times a day) he's in isolation which means he cannot leave his room and anyone under 10 can not visit him (Kody, Jase, Lillyana, and Jewlia).  You can slightly imagine how incredibly difficult it is for Jax to not see his siblings and for them to not see him.  We need Jesus desparately protect all of their hearts during the enormous loss they are experiencing, Jax's losses being too many to list.

During the last three weeks, since starting systemic chemo, we have been in the hospital 13 of the 21 days.  Ronald McDonald house says we will be kicked out if we are gone a lot.  We have no idea what to do and what kind of plans to make.  What we also learned during the last three weeks is that most of the time when Jax is not in the hospital he is too sick to really be around his siblings 24/7 and managing his needs and that of the other eight is to much for just one of us (if for example Sam is working).  We need Jesus desparately to give us discernment on what to do and how to make plans for the summer.

Please don't misunderstand my heart, in the midst of the heart break, and exhausting hard, I could write a very long blog post about the daily blessings and gifts.  I really could, our reality is however that they are mixed in with 8PM, 12AM, 4AM fevers where Jax's clothes are so wet from the fever that I have to change him and the only way he falls back asleep is after what seems like hours of desparately clinging to his mamma, him crying off and on.  They are mixed in with a son who won't eat and even turns down lollipops. They are mixed in with a son who gets so exhausted he flops on you right in the middle of playing trains, telling you he's tired and wants to sleep, the nap only lasting a few minutes because he can't settle. They are mixed in with a family who lives hours apart.   I could go on and on.

However, I don't want to even for a moment minimize all of the incredible blessings.  Not one of them is lost on me.  Incredibly blessings of GOSH,  we met Russell Wilson, talk about a brilliantly wonderful mountain top experience.

Incredible blessings of GOSH, we still have people bringing us meals, doing our laundry, watching our kids, doing grocery shops for us, bringing  us gifts for Jax (just yesterday one arrived in our room here at Chikdren's), receiving an envelope with a card and money in it through close friends, people leaving money anonymously on Sam's desk at work, giving on the YouCare site, doing a garage sale, doing a fundraiser at the farmers day parade ... and I could go on!!

Incredible blessings of gosssssshhhhh I KNOW so many people are PRAYING every single day, some even around the clock!!!  I can feel the prayer covering!!

Incredible blessings of gossshhh this weekend I got time at home and as hard as it is for our eight jewels, 

and as much as I can SEE the effects of everything that is happening ON them (and there's not much I can do but beg Jesus to protect their hearts) we had a lovely time.  And gosssshhh I came home to clean bathrooms as one of my best friends decided to clean them.

Incredible blessings of gossshhh daily worshipping with my two year old son in this hospital room declaring God's promises together, daily making music together, daily getting an endless amount of snuggles, daily reading an endless amount of stories, daily playing Thomas the Train together, doing play dough, and daily telling jokes that I'm not sure anyone else would get.  It truly is sacred time with sacred moments and my soul does not for a moment pause to stop praising Jesus for these. 

I do get daily glimpses of my Jax, sometimes they are few but I get them.

And the heroic nurses that I interface with every day, they are the quiet heroes that take care of all of the jewels here who are alongside with Jax fighting cancer.

And last but not least I every day am deeply and profoundly filled with gratitude that God interrupted our life and decided to entrust to us the amazing and stellar gift of Jax.  Tears.  He is worth ALL of this!!

The truth is that with the sleepless nights, the ups and down, and intensity of the cancer fight, today I'm  tired.  However my very sad reality is that I KNOW our Jax jewel is even more tired than I am.  We desparately need Jesus!!

Thanks everyone for being the FORCE for Jax and our family.   We could not do this without your support and praise Jesus for how HE is using SO many of you to help, support and bless our family.  He is using you to give us the strength to keep moving forward in the midst of our desperation.

💙 Maria