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.

Friday, July 26, 2013

the biggest birthday bash i ever threw AND the longest post this blog has ever seen.

in the bleak winter months i had the party gods give me a vision of a lovely party i would throw for my grandma helen to mark her 95 years. my party voices started and i couldn't stop them. it happened and it was one of the highlights of my life.

my mother had told me no for years about hosting grandma's adult birthday party. mostly because she is the youngest of 7 kids and i guess you let the older ones take charge or something. so i had to usurp her and go to my auntie annette who is the event planner extraordinaire. she said yes and i was beside myself with excitement! this is all a real and true story about my excitement.  there is nothing i love more than to host or be a part of culinary events for people i love. pulling a meal together comes easily to me, especially for large groups, and being that i'm a mormon and we are supposed to share our talents, i have to listen to the party demons sometimes, and that's on account of i dropped out of piano lessons as a teenager and i can't enrich the mormon's on sundee with my music abilities.

i filled up an entire notebook with ideas and such. and the menu changed 976 times but that was the funnest part, thinking of what to feed all these good people. i started on emails to my cousins and aunts and uncles and i think you might like an excerpt of one i sent out to guilt them into coming (because they couldn't see the scenes the party demons were playing for me, i had to lay on the heat real thick like):

This email is to address any concerns, excuses, problems with your attendance to grandma's friday night celebration.

1. you have a babe in arms, they are invited! if they happen to talk back, spit, hit, or wrestle - those offspring are not invited. kyle and ben have promised to behave.
2. you can't find a babysitter for the aforementioned children. call me, i will arrange responsible gals to watch them at my in-laws who live a few houses away.
3. you have to work and can't get to the party by 5:30 or 6:00. Dinner is a spread of food that can be eaten at 6:13, 6:42, 7:23 and so on. JUST COME!
4. you have a medical condition. my husband has a medical license and a killer first aid kit but he does not treat hemorrhoids. we also have two horses on standby should you need assistance once you get here. grandma has agreed to be pulled in by sled, what's your excuse?
5. north ogden is far away. so is the great beyond where grandma will be sooner than any of us. it will be worth it.
6. you don't know what present to get her. her words to me friday were something along the lines of - please tell everyone no gifts! i know they stew about what in the sam hill to get a 95 year old and the truth is, i don't need anything i'm ever given. my tip to you is that she is a sucker for m and m's and also the dark chocolate covered pomegranate seeds at costco, also pero is always a hit.
7. the entertainment should please a bunch of christensen's. i worked for six weeks to secure it. it is top secret but i know you will laugh.
8. food. it will be good. 
9. grandma's hoping it's her last party, you might be sad you missed out.

you would come if you got this coercion, right? the beginning of the email was wikipedia's definition of coercion.

i am pleased as punch to tell you that it worked and our final count was around 75 people! there were cousins i had not seen in years that attended and my glory, it was something i will never ever forget. my sister in law who was eight months pregnant at the time captured perfectly the evening. i am so over the moon grateful for her and her photo skills. i always invite her to my events and she always, always comes thru. she has a gift with natural light and i think the following photos show it.

the woman of honor, helen.
when my alaskan brother, cameron, saw this picture, he asked what bad thing vaughn (my brother shown here) ever did to me to get grilling duty on the hottest day of the summer. he was willing was all!
that martinelli's lemonade is found at costco and it will tickle your fancy. it's amazing
the appetizers were laid out and i ended up realizing that we did an ode to corn. every dip contained corn but no one complained. it was divine! my mom and i fussing over the set up and function.

 and the guest of honor! grandma on the far right and her sister allison in the middle (this is not a great shot of her crunching corn, sorry auntie allison!) and then her sister eulinid in the bright pink with my aunt ruth in the light pink. behind them was the baby station. i gathered up every baby apparatus ever known for all thebabies that came, it was awesome!

my good neighbor grows these fantastic flowers in abundance and let me have a go at them for decor. it was purely therapeutic.

 you will notice the name tags that my brother and dad are wearing. little did everyone know that this was a clue about the entertainment (it was a top secret surprise). and they are also probably conversing about how i made them do ridiculous things to get ready for this party. one of them being mowing a lawn in 200 degree weather and the other painting my mudroom the entire week so that my house looked somewhat pulled together.
 mingling and laughing. grandma pulling scott in congratulating him on staying married thru this whole deal. he is such a good sport!

 i sat with my cousin jill and her husband nick and enjoyed the ode to corn. it was possibly the first time i had sat down in a month. this is real. i wish i had realized that i needed to take my apron off. i wore that thing until i went to bed. ah well.
 my aunt ruth and aunt susan in a deep conversation about how i pulled this off for only $7 a plate. (i kid, but that dollar amount is real folks)
 these two shots are poor reward for my slave labor, but i had an epiphany that i would not enjoy one moment if i did not have help there that wasn't related. i called in some big favors to some good women i love, they obliged and i am forever indebted. at the end of the night, my entire house was put together, food put away, and not one dish left to do or thing to clean. their name tags read, the help. we had to make sure no one mistook them for a cousin. in this picture below, kellie is giving me strict instructions that she will take care of the cake station.

i had a food skeleton inside the house of how the salads should be laid out. they had the ingredients for each salad in separate coolers with a food label on what went into each grouping. i went with salad bar extraordinaire for dinner.

 the next shots demonstrate that these folks came for the party, not my speaking abilities. oh how i struggle with public attention. it makes things not work out smooth for my mouth and head. and apparently, my hands over compensate. a lot of hand action was apparently necessary for the welcome to the party and what we were having for dinner.

 this shot of my mom is a beauty. i love that happy look on her face. it does not at all reveal how she had been my sous chef for three days straight chopping, slicing, and following orders. she's a gem.

if seeing extra large pictures of a salad spread doesn't make you excited, i am real sorry for you. this is my happy place.
 my mom and i made 120 dilly rolls. store bought is not good if you have lived 95 years on this earth and your only complaint is you vomit when your intake of m and m's exceeds two handfuls.

 after dinner was over, i introduced the entertainment. it's okay if you don't know who it is. these folks all did and the pictures of the reveal are priceless.

 this man below made a video (after many, many performances around the state) of a family reunion typical of mormon families. its a one man show where he acts out every character who might attend a family reunion. we were all rolling and the laughter was heard two streets over. it was our entertainment as kids and it extended to most of my cousins. i had a whim and googled him. turns out he was delighted to come and i was giddy for months about this surprise. it made the evening. and, apparently, some of my cousins did not have a VCR growing up. they enjoyed it anyway and in that particular family, most of the spouses that married in to the family had seen it growing up. it was great! 
the reactions upon his arrival were awesome. i had one cousin who wanted to yell and shout she was so star struck. my uncle and cousin were in fits of disbelief and giggles, they couldn't believe it. 

i think this is the winner of the night. the three remaining sisters. it makes me tear up every time. they were watching our baby parade. we had so many new great grand babies there, we paraded them to the front. 

the birthday cake was quite a feat. i was at a baptism where my friend amity brought these two amazing rainbow cakes. they were not only beautiful, but some of the best cake i have ever eaten. i asked to hire her out for the evening only to find she would be out of town.  she came over one day and gave me a lesson. it was gold. i ended up making 20 layers which turned out to be 4 cakes. it was the highlight of my culinary life. they are so beautiful and my goodness, they grab your attention!


 i will be honest, they were slicing up the cake and i had a watchful eye. six layers gets tricky but this was my cool, spy, sneaky face. the help did a fantastic job slicing!

 grandma took the mic right before we ate cake and imparted some gratitude and wisdom. she's my idol.

 this face is one i have seen many times thru my life of loving her, but i feel so over the moon that ashely captured it. it's her overwhelmed, amazed, purely grateful face. priceless. happy 95th grandma helen.

the best thing i ever did

i am going to tell you about it, but first let me tell you why before what.

we have a new normal around here. that's obvious with the past few posts. things are good with easton.  we are on a path and i feel like we are making progress. we still have a long road ahead and there are many things to conquer before we get a clean bill of health, but we will get there.

in this process of this sickness i discovered i have a really hard time balancing and not just giving up on certain things. for instance, when there are weeks where we are at the hospital, dr's office, lab all day for say 4 of the 7 days of the week, i find it really hard to follow thru with cleaning, three meals made, pick up, homework, extra curricular activities. not to mention time for myself. things came to a head and that's when i made a decision to hire a cleaning crew for my house.

all my married life i have discovered that i really, really struggle with keeping the cleaning voices quiet in my head. tell me i am not the only one? i have the need to clean everything top to bottom, old to new. i struggle with keeping balance on both ends.  when life is crazy i tend to stress over cleaning and am usually too drained to do the actual cleaning, only stress about it.  also, i found i had to get really worked up and mad to clean to propel me thru.  it was seriously a disorder that i probably should have been taking medication for.  i  have my kids help me but getting them to deep clean the way i want it was only injuring our eternal relationship. that's being honest. i do however have them do things that don't require spraying chemicals. once i watched one of them clean the bathroom, ugh. it was far more dangerous for everyone with all of the scratching, itching, touching kids do on a regular basis, and then you throw in bodily fluids on surfaces? they were contaminating themselves before they could clean the mess up and i was loosing sleep over it.

every year for my birthday i have wanted this deep cleaning package my brother has been telling me about.  that scott mckay is a hard sell. for three years i have begged and he just has too much common sense to indulge in such things. i knew my mental health was at stake and so this year, i told him that was what i was getting for my birthday, a deep clean.  these folks came and cleaned windows inside and outside, walls, corners, baseboards, decor was dusted, couches vacuumed, and then a regular cleaning to top it off.

when scott consented, i took the two weeks before the cleaners came to de-junk every crevice in my house. there were trailers full taken to the DI. it was so incredibly liberating.  i have always had a hard time making time for dejunking because i always feel like i am in the process of regular cleaning. it was becoming a snowball effect. and for the record, this cleaning problem and stress always seemed manageable in smaller quarters.  this house has killed me. i realize it's no mansion, but we lived for ten years in apartment type dwelling and so it feels massive to me.

while these good cleaners were doing their deep cleaning, i asked if they regular cleaning as well.  he gave me a quote and i told him to come twice a month to this house.  i made room in my budget by cutting down on some other things and we fast once a day (joke). i made changes in phone services, and started cutting back on extras and it is worth every single penny! i can keep the house picked up but i don't function very well when i have the burden of cleaning, pick up and de-junk on my plate. it feels like i have had someone give me 10 years worth of therapy. i highly recommend it if you suffer the problems i do. and for the record, i do have to clean before the cleaners come in a sense but it has forced me to only worry about pick up and regular cleaning everyday. so at the end of the day we go thru the house putting everything back in it's place and then do meal clean up and floors as needed. but, twice a month, my floors are mopped, kitchen scoured, all floors cleaned, sofas vacuumed, bathrooms cleaned top to bottom and my goodness, it feels so good! for the record, my two levels (about 3100 sq feet) for my bi-weekly cleaning is $100. am i crazy? yes, either way you look at it!!