Wednesday, July 31, 2013

sweet relief

monday was our big day with easton. we were checking his eosinophil levels to see if they had lowered in his blood.

the week before i threw my grandma's big party, i was de-junking and came across the articles scott had printed about eosinophilia and hyper-eosinophilia at the hospital.  when he initially brought those home, i had a very strong impression not to read them.  the doctor had told me we were doing everything possible for either diagnosis. easton's eosinophil levels suggested the hyper condition, but his symptoms did not. i made a mistake and read the literature before i threw it away. the one good thing that came from it was reading that when prednisone is taken, every time you taper, or lower the dose, the disease can re-surge and cause all of the symptoms to come back for a few days. we were finding that to be very true with easton. the every two week taper was a cruel trick. he would be making progress and then we would have to taper and he was down for five days. reading that part made me feel ready for the next 6 tapers we had ahead. the part where it said hyper eosinophilia is always fatal made me stop dead in my tracks. my heart sunk and instantly my eyes were wet and i realized why the dr and scott were being so solemn about this. that was a sunday night i read that. the entire week, i found myself on my knees a lot. i was contemplating things that a mother fears. i pushed it aside by submersing myself into the party planning. throwing that party was the best distraction i could have had while we have been going thru this. we had to cancel a couple of vacations (traveling is hard with a restricted diet that is crucial that it is followed with exactness and it was a somber thought to have to pinpoint every hospital along our intended traveling routes) and as a result we used those funds to pay for all of the things insurance doesn't cover and put some attention into our yard.  if we were going to be home all summer, we might as well enjoy the house and the yard. i planted 13 flats of annuals, we amended soil, finished items on our house list and got ready for this party in between the plethora of hospital, lab and dr visits. that week, i had given myself so many tasks to complete, i felt lucky that i had little down time to contemplate what i had read. i knew we were weeks away from retesting his levels and it would take the week to get the blood work results to see if it was the hyper eosinophilia and if it had attacked the heart, brain, kidneys, liver or muscles. the week seemed to fly by but at the same time, each second was loud and slow with these humbling thoughts.

as we were cleaning up and people were dispersing from the big bash, my cousin Johnny and his wife inquired about easton.  they had traveled from oregon to the party and had heard about easton's illness. they told me that their good friends have a daughter who is fighting HES (the hyper condition) and it had attacked her kidneys. When the diagnosis was given, they realized that everything that is out there about this condition labels it as terminal. This family was able to go to a specialist in pediatric HES at oregon health sciences university to consult with him about their daughters condition.  he told them that pediatric cases have a much higher survival rate and that it's not a death sentence. my heart soared when i heard that. i felt like even though i didn't listen to that strong warning about not reading that literature (for the record, i didn't read it for 4 weeks) that a loving father made it up to me by bestowing that information to me. it was in no way a coincidence that they would mention that to me. i still get teary thinking of that loving mercy extended to me. it helps me be a better parent to my kids, a little more loving when i want to be upset when they don't follow my strict instructions. also, i was relieved to know that the road might be long to a full recovery but that it was possible.

elder bednar gave a talk in march found HERE. i came across it a few days before my good friend was diagnosed with colon cancer that had spread to her liver. she is in her early 40's and today she sent her oldest son on a mission. her husband was my favorite seminary teacher and now they are our neighbors. i love them dearly and we have all been so touched by their journey. the concepts presented in this talk have stuck with me. i thought about it pertaining to my friend and then, i had the opportunity to apply it to me. do i have as much faith in dying as i do in living? would i have the faith the let my son go as much as i have the faith that he is healed? my goodness, it's humbled me. i think i have more faith in living sometimes than i do in dying and that is something i need to work on. it seems ironic as a mormon that i wouldn't have more faith in a forever family and in the sure knowledge that we would always be a family unit if we lived up to those covenants, those very principals define mormonism. my friend i previously mentioned called me last week. even though we are friends, scott had been involved as they have gone thru this cancer challenge, and i stayed aloof, wanting to give them their full privacy.  we were finally able to talk and my goodness, talking to her gave me the boost i needed before we did this blood work. her liver tumors have shrunk remarkably, and her cancer numbers are astonishingly low. she is proving a miracle. we talked and related. she told me that she was really struggling as to what it means to live with cancer. she decided that most of the time she felt good and so that is how she would act. it's a new normal but "as a man thinketh". it helped me so much. we need some counseling but it is extremely hard to get into a pediatric specialist (im going on three weeks of trying to be seen within the next six months) and she passed on her counselors advice to me. define a new normal and be happy. live. don't feel bad about what isn't in your normal anymore.

the blood work showed that easton's eosiniphil levels have returned to normal. with this blood test, for now, we are out of the HES category. we are on our way to healing. now that the eosiniphils are out of the blood, it will stop the attack on his GI tract. eosiniphils attack tissue giving easton what's like asthma of the GI tract. the rate of eosinphils were 100+ in his GI tissue, and so it will be a while before he starts to feel like his old self and before he starts to recover. he has a while of this strict diet, steroids, vitamin boosting (when the tissue is so inflamed, it's extremely hard to absorb nutrition), pro-biotics, and the thrush, oh it's miserable, but!!! we are leaving our dark path for now. our unknown, scary, what's the road we are on path. the relief is not something that words can describe. knowing that easton is functioning enough to return to school in a month and that we don' have to live day to day, dr visit to dr visit is tremendous relief. i am always grateful for this point in a trial when you can look at it with the layers of miracle and add them to the foundation of life.

extremely blessed, overwhelmingly loved.


Kristy said...

So glad to hear this good news and want you to know I am praying for Easton's speedy recovery and for patience in healing. I know this has been so emotionally draining for all of you.

The Ballard's said...

So very happy to hear about your sweet blessings and the return to health for your boy!

kate said...

what wonderful news. thank you for the update and for noticing and sharing the miracles in the midst of your trial.