MONDAY, May 14th
We finally got to go home. We were all very much ready.
Monday was rough rough day. Atticus was done. Done with it all. It was one of those days that in the middle of a "rough" moment, you pray in your mind, "OK Heavenly Father, You've got to give me some extra strength today, 'cause I've run dry."
For starters the poor guys just does not know what he wants. He's hungry but nothing tastes good. He's uncomfortable but can't move. He's tired but says, "It's too hard."
We had to change Atticus port dressing/tape/needle. Tape removal is VERY traumatic for Atticus so I knew we were in for it. I warned the nurses too and apologized in advance knowing Atticus' "fiesty-ness" would come out full force. And it did. But sooooo much worse than I thought...
I had him on my lap in cradle position and basically had to pin him there with both Eric and I locking his arms while Kris, our nurse, took off the dressing. She did everything she could in her power to ease the pain, adhesive remover, wet wash cloth, this oily vial thing. Atticus screamed. Literally. Yelled for someone to help him. Begged daddy to help him. Told me I was hurting him. I almost got punched in the face. His right arm was up, fist ready, Heavenly Father must have helped him with that one because I am glad to report I do not have a black eye, but I sure thought I was going to get one! We stopped half way through so he could calm down. I was so worried he would put himself into a seizure. He was that upset. I know I have said this before but.... intelligent medical discovery people, while trying to finding a cure for cancer, do you think you could also discover an adhesive dissolving that really takes the sticky-ness away? Thank you.
Next on the today "sucked" list (sorry for the language but it's the truth), Atticus has not "taken care of business" since Wednesday. We have had him a dose of Miralax Saturday, two on Sunday but no results. Pain medications cause constipation and with him being bed ridden for 5 days and having a hefty amount of pain meds, the poor guy was uncomfortable. So, we had to resort to a suppository. It was more after the fact that was upsetting to him then the actual process.
We got him in the tub and gave him a good cleaning. It's so much easier to bath him de-accessed. I scrubbed his cute little body and gently washed his hair. Daddy held him in his lap in the tub. That's something we'll have to figure out. How to bath him with him unable to sit up on his own for long periods of time. The good news, his scar from the shunt surgery is healing really well.
I got him dried off, diaper on (and yes the suppository did its magic), then he and I got cosy in bed and napped.
Atticus woke up upset. His tummy hurt; his head hurt, and he wanted to go home. We gave him food options but nothing sounded good. He'll decide on one thing, so you'll pick up the phone to call food service or grab keys to run to the store, when he'll say, "It's ok. I guess I didn't want that after all" putting us back in square one.
With his head hurting we obviously had to re-access him since he won't take anything by mouth. I don't know what was with today but, holy cow you'd have thought we were torturing him. He usually will cry a little when we put the magic cream on at home, saying, "Im going to be scared" (meaning the poke) but today was seriously out of control. I had to pin his arms while Eric put the cream and dressing on. He wore himself right out and fell asleep in my arms.
When he woke up, we had to access him. Monday just kept getting better and better. Again, two adults, two nurses, and a 4 year old screaming bloody murder, fighting us the entire way. It's hard being the bad guy. Being told, "your hurting me" and "please please stop" but knowing you can't. I was fighting back tears, thinking, "I hate this. I really really hate this."
Once accessed we got him calmed down, got him some pain meds, and fed him Apple Jacks. Emotions were close to the surface. I spoke with our nurse and explained that "Today, Im really frustrated. I feel like I'm being left in the dark. Normally I feel like the Oncology Dr's keep us posted on everything, but I feel like I know nothing. I have no idea what our plan is and Im really really frustrated. I know that it's not good but I want one of them to just sit down, stop beating around the bush and tell me what's going on."
While waiting for one of the Doctors to come down we got a few visitors... Marianne came first. Marianne, was in our ward/church before we moved to Sunnyvale, so we have an extra special place in our heart for her. She told me that Thursday (May 10th) Dr. Lenarsky updated everyone on what had happened early that morning and said, "We may loose Atticus today." She said everyone cried. It's surreal to sit here and type this. We were THAT close. Next came Amanda, another one of our favorite Oncology nurses. She is always so sweet and tender and always assures me that I can never call too much! Our last surprise visitor was Dr. Goldman. He's such an upbeat guy. He made us all laugh by saying, "I would be more than happy to come to your house to see Atticus... I know you won't have coffee or beer, but I'll still come!!" My response, "We make a mean hot chocolate, Dr. Goldman!" Yes I was frustrated, but we LOVE our Oncology Team. LOVE. They take such good care and real tangible concern for our family.
Dr. Weinthal came to "talk." He really didn't say anything Eric and I didn't already know or thought but it was still nice to talk with him. Atticus is in bad shape. His tumor is much more aggressive than anyone thought or anticipated. Dr. Weinthal's exact words were, "I hate to put a time frame on anything because God's the real 'time' control but, let me say this, If you want to do something fun now is the time to do it... You've maybe got one month."
One month. Eric and I have faith and know without a doubt in our heart that Heavenly Father is aware of us. Know us. Loves us. He knows Atticus and is so very very proud of him. Atticus is in the Lord's hand. He will earn his angel wings when the Lord see's fit. Until then, we are going to try dang hard to make more memories and keep working on our "Adventure List."
Snuggle time
No matter what this kid goes through, you can always count in him for a good laugh or silly face.
In the wheelchair and ready to hit the road.
HOMECOMING....
Shortly after Atticus came "back" he talked non stop about how he will be going home in an ambulance. Thanks to the incredible SUNNYVALE volunteers, EMT's, and firefighters, Atticus not only got to go home in an ambulance but had an ENTIRE entourage of rescue vehicles! It was amazing. As soon as we pulled in to our community. They let Eric and Atticus sit up front. Each vehicle turned on their sirens and we drove home. At about 5 miles per hour :). It was incredible. The tears were coming full force. Happy happy tears.
Watching Atticus get out of the ambulance was such a good moment. He had the biggest smile on his face. There were about 15 or so men and woman who took time out of their schedules to provide one pretty awesome experience for a 4 year old little boy!
Buckled up and ready to go...
Daddy and Atticus got a "tour" of a firetruck while I bawled my eyeballs out and attempted to thank everyone. Explaining the difficult week we had had and this was a perfect ending to a challenging day. My mother in law was brilliant and ran into the house to grab "Angel for Atticus" bands for each one. It was a really cool experience. THANK YOU SUNNYVALE. We LOVE you!
Click HERE for video on facebook.
Atticus' welcome home banner done by his buddies!
This pretty much sums up Tuesday... Eric and I look awful.
It was a pretty rough exhausting day
Isaac, really likes Atticus' wheel chair.
Captain Roy brought Atticus his very own Sunnyvale Firefighter badge..
And got his name embroidered on an official "Sunnyvale Firefighter" shirt.
We have been playing a lot of Candy Land!
Isaac's new super cool trick!
WEDNESDAY, May 16th
Ready to hit up the Sunnyvale park with Daddy and Aunt Sarah....
Some serious car racing!
Our new version of "golf!"
Isaac is getting pretty good at this walking thing...
but only when HE wants to :)
Bedtime.. we got bathed, teeth brushed, then decided to listen to some Disney songs on Pandora and have a dance party in bed! He loves the song "How does she know that he loves her..." from the movie Enchanted. It is SOO cute to hear him sing it!
MORE HOSPITAL PICTURES
..KAMMIE..
Our favorite 6th floor nurse.
Thank you for everything. We love you! A lot.
29 comments:
Oh, Cindy and Eric. You are the best parents ever. EVER! Atticus and Isaac are so blessed to have you as their mommy and daddy. Please know and take peace IN knowing that you've done it all perfectly. If Atticus' life and illness were to play out in this same way, regardless of whether he was your child or not, THE TWO OF YOU gave him the best possible family, childhood, life and love that there could ever be. No, sometimes we cannot change a course that is so terribly headed in a bad direction, but we CAN provide the best everything our loved one needs. You have done that. You've lived with no regrets. Nobody could have done it better. NOBODY. I think so much of you and I love your little family. (((Hugs)))
I agree with Sally's comment above. Atticus is so lucky! And God must have trusted you so much to send you such a special spirit...for he certainly is special and so is your family. God knew you could handle these trials (of course I always think i wish heavenly father wouldn't trust me so much when things get tough!) but he always strengthens us when we need help to endure. I pray continually for your sweet family and the tender mercies of time!
We would love to send Atticus something but don't know what...please let us know if we can do something or help you on your list!
Love from Utah!
You all are amazing. No words could do justice to the way I feel about your family and the way you parent and live your lives. You strengthen all you know you and know your story. We love you and are praying so hard for you.
Cindy, you and Eric are just amazing parents to an amazing little boy. I wish there was something I could do to help make your lives easier or give Atticus another special experience, but I love reading about all the people in your lives who CAN do things for you. No one deserves it more.
My heart breaks for you both as parents . Atticus is a true angel on earth!
That is one amazing welcome home!!!! I am in awe. That is one of the coolest scenes I have seen yet. How awesome. It's so hard to read all the pain he was in and I can't imagine how hard it must have been to witness. He is such a strong boy. And like you said, he can still manage a smile or goofy face no matter what. That boy is an absolute angel. I adore him. I adore you.
My heart breaks for you. I love you so very much.
Atticus is a fighter. Would you have expected anything less from him while in the hospital? He should be screaming! It's obvious that you are deeply loved by your entire community - I LOVE the welcome home you received (and the cute friend banner!). In a very selfish way, I hate to see Atticus little life come to an end merely because I am SO uplifted, strengthened, and inspired by your blog. Each time I attend the temple, Atticus' name goes on the prayer roll - as well as being included in my personal prayers. That's how much he has inspired me (a total stranger!). I wish you happiness and strength in the coming days - what a beautiful family! May God's tender mercies continue to flow to your family at this very tender time.
A Utah friend
What a wonderful homecoming for Atticus. I cried my way through this entire post.
It just breaks my heart that he has to endure such pain--I can only imagine how hard it is for you two...
I am so grateful for the update--not a day goes by that I don't think about that sweet little guy. I'm sending lots of love and prayers to you.
Give that darling boy a sweet kiss on the forehead for me, would you?
Linda
I cried reading your post. One month, I can't even imagine what you guys are going through. I have a nearly 4 year old and it breaks my heart for you guys. But your faith and belief in our Heavenly Father is inspiring. If there is anything I can do for your bucket list, I would be honored. I work for a radio station, so if he would like a tour or ANYTHING let me know. It will be done!
You are an amazing mom. Absolutely amazing. Your boys are so so blessed. You've taught me so much and continue to teach me every post I read. Much love and praying for happy adventures in the coming weeks with your little hero.
What an incredible and touching homecoming that was for Atticus and your family (and for me to read about.) Thank you for sharing...everything. Atticus is so brave, so cute, so funny, so loved, so loveable and so close to our Heavenly Father. We love you guys.
Love the picture of you and Atti snuggling, you are an awesome mom. I agree with Emily, Atti is truly a brave and special little soul.
Your neighbors in Formey arepraying for you every day. We pray that you find strength to endure what has been asked of you and for comfort in those midnight moments when it seems too hard to bear. Thank you for being willing to share your journey with us. Thank you for making it a real narrative and for allowing yourself to cry and get angry and to allow yourselves to be enveloped in the arms of the Lord. I am so sorry you have to go thru this. ..that sweet boy Of yours has touched countless lives. And his influence will never be gone!
I am so sorry for what you are going through and pray for Atticus and your family several times a day. What an amazing mom and dad you both are - Atticus and Isaac are so lucky to have you! And both of your boys are beautiful reflections of you!
I LOVE the picture of Atticus high-fiving Isaac!
I wish many, many blessings upon you all.
I found your blog a few months ago,completely by accident and now I check in every day. Thank you for sharing Atticus, your lives and your emotions with the World. I have been completely amazed by you guys and the loving, giving community that surrounds you. I will keep you in my prayers.
If you can think of anything Atticus might like from the UK then I'd be only too pleased to send it.
Love from the UK XX
My sister also has a brain tumor. She shared a blog with me that has inspired her (her husband's cousin, age 14, has stomach cancer and this is their family blog). This darling, very sick boy told his mom, “Mom, there is never going to be a cure for cancer.” Heavenly Father lets there be cancer on the earth so we can learn how to love and serve each other. Look what is happening to me, and the kind people who have stepped forward.” Think of all the ways your family has been served - and the way you have served all of us thru your blog. Thank you, Cindy and Eric. Although your trial is NOT easy, Heavenly Father will guide you in your darkest hour. He does not leave us comfortless (Read "How Firm A Foundation", verse 3). Another quote from this blog, "Anyone can give up. It's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart...that's true strength!" (Zig Ziglar) Cindy, you have held it all together - even when you think you've lost it! LASTLY, I hope this poem, written by this boy's cousin, will bring comfort to your family and to us all as we continue to pray for Atticus.
The Sunflower
Said the seed to the gardener, “Must you plant me right here?
The soil is rough and the grass is too near.
Over yonder the lily has got a nice spot,
Where the water is fresh and the sun not too hot.
Or plant me – oh please! – in the willow’s nice shade
Where the daffodils are in such beauty displayed;
Not here where the ground is so barren and wild.
Put me in someplace more tranquil and mild!”
But the gardener was wise, for he knew the whole plan.
Said the seed, “I can’t grow here!” He said, “Yes, you can.
Each flower in my garden I watch, and I know
That here in this spot is your best place to grow.
The ground might be harder, the sun more severe,
But you, if you choose, can bloom beautifully here.
Be patient and trusting and soon you will see
How lovely this corner of garden will be.”
The days passed by slowly, filled with hard work and toil,
Pushing up to the sky and down into the soil.
Through the heat from the sun and the floods from the rain,
Seed and gardener both strove for more fertile terrain.
‘Til one day the gardener approached with a smile;
“Look up,” he said, “and around you awhile.”
The seed turned with ease, surprised at his power,
And saw that he’d grown to a glorious sunflower!
His place in the corner was a sight to behold -
Towers of green with their crowns of bright gold.
Now he could see the whole garden complete,
From the willow o’erhead to the grass at his feet,
And he learned from the soil he’d taken for granted
To trust in the Gardener, and bloom where you’re planted.
~Kiera Bennion, July 2010
A Utah Friend (part 2)
Cindy,
It's hard to put into words my thoughts when I read your posts. Today, I was so teary when I saw the homecoming that Atticus had. The ambulance crew. WOW. I am teary thinking about it again. One because I love seeing him so happy and having the royal treatment and two... I love seeing so many people reach out to show your family love. To see how many lives that little boy is touching. Amazing. You are so loved. I just read a comment from the UK. I've said all along you have people all over the country praying... But I was wrong... People all over the world. It is special to see the good, the love that so many are offering.
Hugs from Ang
xoxoxox
P.S.I would love to know what is one your adventure list that I can help with...
Just saw your sweet boy, Atticus, on the news. What an amazing kid you have! I'm a local photographer, and I'd love to offer a session for your family if you'd like. I don't want to step on toes if you have a photographer you love, but I want to make sure you have all the memories you can documented. Shoot me an email mz@melissazihlman.com if you'd like. Praying for your sweet boy, and for your family. Best, Melissa Zihlman
Atticus is my hero! He is beyond special and has changed my life! And his parents are such a light in this world. You are Atticus's angels! I would love a bracelet for my family to wear proudly! Thoughts and prayers for you guys! 363 w 550 n Centerville, Ut 84014
following your posts from the November 2009 birth club on babycenter. You guys are on my heart & I'm praying for you! Love the pictures. ((hugs)) from Florida
Amanda
What an amazing little boy and family. I know how hard it is to hear those kind of words from doctors. We were blessed with our own little angel that we lost last month. She was almost 7 and had a neuromuscular disease. She was doing great and suddenly had her heart start to fail. We miss her so much and miss all the happiness she brought into our home. Because of her condition, and because of the news the doctors had given us since she was a baby I had always feared the day when it would be her time to return to heavenly father. No parent should ever have to go through that, but when the time came I couldn't believe the peace and comfort heavenly father blessed our family with. There is no way I could ever deny the truth of the gospel after going through this experience. I read that you guys were worried about how to give Atticus baths now. We have a bath chair my daughter used and loved. It's like a lounge chair with really low legs and you can adjust the back to have it really upright or reclined. It fits great in a regular bath tub. Our little girl absolutely loved baths and we would love it if another little angel was able to use it. We could send it to you if you would like. My email is bradnholly@yahoo.com, just send me an email and I could mail it tomorrow. Enjoy every minute you get with your sweet little boy.
Holly
My ward in Holladay Utah has you in all our prayers and Atticus' name has been sent to our temples.
One of the hardest things about this situation must be that there's no way you can simply fix it. I think this is especially hard for us moms because we are fixers! But you can pray. The Lord is near to all who call on Him. Sending so much love to your family!
I found you blog by accident & like many others, check it daily now. I pray for sweet Atticus & your family. Thank you for sharing your story & Atticus' sweet (& funny!) spirit with the world. Love from Washington!
A friend of mine from Utah led me to your blog and I will forever be grateful. I think of your family daily and pray that you will have the strength you need. You are amazing parents as noted many times already. What an example of courage and love. I'm so grateful that even amidst all the struggles you are going through that you are still able to journal your experiences. I know that memories are priceless and you have certainly blessed Atticus and Issac with the greatest memories any child could hope for. The love our Heavenly Father has for each his children truly shines through you. Love from and Idaho Mom!
Prayers coming to you from Wyoming....
I have been following your blog for a while. You guys are sure a inspiration to us. I have 3 very active busy young children. After praying and thinking about Atticus and your family lately it has helped me be a better Mom. It has given me more patience in moments when I am struggling because I think about how blessed I am to have them. I love how you have your "Hansen List". How special it is to make as many memories as you can and live each day to the fullest. May you have peace in the days ahead. Your family are in my prayers.
I need to learn to grab the kleenex box before I sit down to read your posts! what an amazing homecoming. those folks are definitely angels. so very touching. keeping you & your sweet family in our prayers.
I'm with the first commenter - you and Eric are the best parents ever. You are strong for Atticus when he needs you to be, you're always patient, you make ABSOLUTELY EVERYTHING fun and special! You two are just amazing, and so inspiring. What a wonderful and awesome homecoming for such a little hero. Little Chunk is such a doll too! Atticus has touched so many hearts-he is an angel, and you and Eric are angels. I feel very blessed that I have gotten to "know" you and your precious family. We pray for you all the time, and we have so much love in our hearts - so much - for this adorable, brave, heroic, amazing, little fighting four-year-old who is a gigantic spirit in a tiny body, and his courageous, wonderful parents. I love hearing about the wonderful things that Atticus is getting to experience, and cheer and cry for him all the time! Go Atticus! You are amazing!
Post a Comment