LIttle sick turkey....

 

This was Mr. Blue on this Thanksgiving he had the stomach flue and was sick most of the day. 

Two Month...... Cancer free Check up

 

 

Mr.Blue Eyes was shy today with the staff and his doctor.  The appointment snuck up on us.  A lot has gone during the last month.  He is settling into things as well as he can for all he has been through.
He is still struggling to sleep independently, his ability to focus and his appetite is still not as it used to be he is actually eating less than ever now. Don't think he has giving up on Tapatio though he still loves that.  As far as his physical health is going he has had one cold since going back to school and seems to have gotten through that.  His blood count was lower today at a 4 but Dr. Armenian said that that is OK and he is doing fine even though this reading is lower than last month.  We loved seeing our nurses and are bummed to find out that our blood draws are now going to be in a different location so we will not be seeing them every month now.  We will really miss them they have been so good to Mr.Blue Eyes.
It was nice to be reassured by the doctor that every thing seems normal and good.
From my perspective this was a ponderous appointment.  It has been two months since the scan came back clear of cancer.  Wow!  It is actually starting to feel like more of a relief now, it helps to have more distance from that day.   Hopefully we will see in next months scan that the same holds true.
Feeling very blessed to be sitting with these 
thoughts of gratitude today.

Fuzzy

 

Mr. Blue Eyes is getting a full head of fuzzzzzy hair.  It is so soft and fun to rub.  I will however really have to say that though it has represented cancer in its raw visual form.  I did love the sweet bald head.  It was a treat to rub and hug and even admire.

Bald Buddies

 

 

 Not a lot of words for the tenderness I feel around this day two weeks ago.  A great friend of mine that I had posted about earlier on the blog recently got breast cancer was over at the house today.  She arrived with only 1/3 of the hair on her head that had fallen out in just the 4 days since I last saw her.  Her daughters came with her and her sister joined also.  We made the best of what can be so hard into a party.  We laughed shaved a Mohawk and even bicked it.  I had colored a wig for her two times trying to bring it blond enough.  I had stressed over it and quite frankly prayed over it.  I had not touched a wig since I was trained as a Cosmetologist.  Prayer and a little bit of skill  payed off she left feeling great.  She was brave, strong and courageous.  So proud of her I know today was not a day she had looked forward to.  Mr Blue eyes was cute with her so here is to two very beautiful bald heads.

Giving Thanks

This year I really wanted the kids to be more mindful of  the meaning of gratitude and being
 THANKFUL. It was 19 days late to get it done but we have a tree of thanks now to help us to be more mindful of our blessings.
The echoes of the journey still resinate loud in my soul.  I know now that they do for our whole family.  As the kids starting righting things they were thankful for to hang on our Tree of Thanks this is what came. Thank you for Dr. Armenian, City of Hope, Prayer, Nurses, Life, food, tapatio, family, God, undies, ect......

 

This was Mr. Blue Eyes bundle of thanks that he wrote...

 We certainly are feeling the emence graduated of a recovery from Mr. Blue Eyes Lymphoma. It has been a time of thanks that has brought on a whole new meaning of what is truly important.  Reflective and ever grateful for the power of  Heaven that gave us all the strength to endure.

First week of full days at school

 He hugged me the biggest hug on his first FULL day when he got home.  It melted my heart and brought tears to my eyes. " I told him that it is a lot for me to get used to also..." We are so used to be together it is hard to be apart. So far he has done OK for his first week back.  He wanted to play the viola so he started this week.
He is a tender heart and very sensitive to the world around him.  He says he likes school  SO SO.  He is pooped at P.E. but he is trying.  He seems to enjoy a few friend and likes his teacher. Focus seems to be our biggest problem once he is home, homework is a small night mare.  We will take it over the one he just went through. So the report is overall good!  I would give it a -B.

A date night with Mom and 4 other kids..

 

This was a really special night out for our Mr. Blue eyes.  We were shocked when City of Hope had contacted us and said they had complimentary tickets to Cirque Du Soleil.  I (the crazy mom) drove five kids down to the Port of Los Angeles for the performance. (Mr.Blue eyes brought a best bud since his dad could not go.)  We left with plenty of time to go out to dinner on an official date. I was really looking forward to it.  We took of with a few hitches and made great time getting there.  I had printed a google map and had a garman in the car.  I was sure that we would find our way.  We found our way all right, all the way down the 47 going the wrong direction.  That was only after we crossed some rather GINORMOUS bridges. While going over the bridges Mr.Blue Eyes brother hollered " everyone close your eyes!!!!!, Everyone except MOM!" LOL!  I have to say it made me a little queasy at the top also.  I then discovered Mr. Blue eyes was not afraid he liked it and was bummed we did not go home the same way home.
We ended up having to grab fast food to make it on time. The performance was lively and the kids really soaked it up, even the little 2 year old.  The kids said it was AMAZING!! Mr. Blue eyes loved
We also had the great fortune of sitting by another family from City of Hope.  They very familiar with cancer and what a strong kiddo they have.  He was bright eyed and talkative. I was impressed.  They also have four kids and have been battling this journey two times because of a relapse and many many years.  So little did they know that they inspired and strengthened me to tonight just by meeting them.
It was a big night out, Mr. Blue eyes was exhausted by the end.(he was asleep within minutes of getting in the car. Then I drove my Circus home and tucked them safely into bed.  It was a date to remember.  

First Day of School

First day of School November 2013

Walking to school backpack loaded and ready to go!

Renee our awesome social worker

 

WOW!  Mr. Blue Eyes went to a little over one hour of school today.  He will be doing half days the rest of the week.  When we arrived at school a large crowd of kids gathered around him.  He was overwhelmed with the crowd he is not much for being in the spotlight.  He finally was nudged by the social worker to go play in the school yard.  He lept like a gazelle into the yard trying to escape all the attention.   I was also overwhelmed by the attention, but not in the same way.  What a  great moment to witness these amazing kids being kind to our son.  He is returning to school after winning his battle with cancer.
He got to have our social worker from City of Hope be there with him to talk to his class.  Her name is Renee and she is  loving and sweet.  She brought his class little coloring books that they read a story of a kiddo with cancer.  The class mates were inquisitive, asking a lot of questions and were so kind to Mr. Blue Eyes.  He also got to talk about the poster we had made together of his journey with cancer. It had a lot of pictures on it all ones that he picked.  I was so proud of him for being brave, talking and sharing his experiences.

My perspective today was that I was so happy to see him going back to school and reentering the world.  I feel so so lucky and blessed that we have arrived at this place.  The other element of this day and week is that I have protected him from the world, loving him making sure he is coping and processing all of the change around him.  This has been more than a full time job (I am not complaining I would do it again)  but today it changed I had to let him go.  It was worse than sending him off to kindergarten. I seriously felt like such a sap, but letting go of a cute bald cancer free 9 year old is hard.  Especially for this mom. Though I am happy to see this happening,  I will miss our days together I will miss that I cannot protect him from the world of germs and those who are none empathetic to him.  It was a huge reality of our journey when I saw our beautiful boy standing in the play yard at school today with his little bald head amongst those with hair.  There are moments when I see him as if to look at him for the first time with no hair, reminding me of the road traveled over this long summer.  I chock back a few good tears and remind myself that he did it.  He kicked cancer! He will only look different from the outside a little bit longer but on the inside he wears many badges of courage and hardship.  I wear my badges of this journey with a more tender outlook on life and reminders of Gods infinite grace and mercy.  We really have to cherish every moment they only happen once. So today I cherish letting go.....

Carving

 

This was the carving of the Cyclopes with  fangs for teeth.  I  helped  because his pumpkin was so thick.  I had never been so glad I only had to carve one eye, it was making my hand soar.  The boys all had fun and I am really glad we did this little fun tradition outside.  With the pumpkin guts everywhere and the boys trying to light paper on fire in their pumpkin's it was a 911 adventure.
Did the pumpkin's make it to the front porch?
Did we decorate for this holiday?
Do we care?
The answer to all of the above is no and I have decided lowering the bar is OK it just may be this way for a while!

The less than happy trick or treat boy. He said, "Let's go home mom I am done!"

I was so happy to help him out I was done before it started.

One month check up with the Doctor and a blood draw for Mr. Blue Eyes!

It felt like six months not one since we last came in.  It was good to be there today, good to see all of the familiar faces.  Wonderful for the mom to have the cute baldy checked.

We get to see Debbie almost every time we come in.  She is so sweet and helps me know when the doctor is pulling my leg because sadly I am oooper gullible.  

Happy Halloween

 

You can see by the picture above that Mr.Blue Eyes did not love the blood draw.  He said " I really wish I had my picc line back in!"  He survived and then we headed to the Doctors office.
It was a great visit, the seat are seemingly more cozy when your on the recovery end.
We did some paper work, laughed at his doctors funny jokes and then found our his blood count.  5.4 white Blood cell and 3.4 ANC.  I was so happy with these improved numbers, OK that is an understatement.  I was ecstatic!  This is a HUGE improvement from one month ago.
Today we took some  homemade cards to our Doctor and to the nurse staff that has seen us through all of this treatment phase of the disease.  This is the photo that we used for the doctors card. Mr. Blue Eyes wrote in all of the cards and was really great about passing them out. Hopefully he will learn the art of being thankful to others,  a mother can dream......

Nails

 

I find it a little strange that Mr.Blue Eyes has lines in his nails.  They all look the same.  I am  almost certain they are from the large chemo's that were 21 days apart.
Interesting and I wanted to document it.

FINDING HIS WAY

I walked around the house tonight turning of every light in the house.  Mr. Blue Eyes had just walked around.  He turns on every light before he enters a room.  

When he is sleeping with us at night, If I get out of bed he jumps up and becomes my shadow.  Being alone,  full of fear has been one of the ways his little person has processed having and having had cancer.  He is unsettled in his big world.  He has to fall asleep with someone around him.  He is terrified of the dark and has a vivid imagination.  This has been one of the biggest manifestations of his  inward fears and anxiety.   I have not kicked him out of our bed yet for this very reason.  I want him to know that he is safe.  

Safe to sleep to dream and to find his way in the world. 

 His world will not always be filled with so much fear and lack of understanding.  He will grow and be less afraid as the days go by.  He will be stronger than ever before. 

Courage 

has not been wasted on him.  He will get there.. we all will.  

Until then sleeping with a bald adorable wiggly worm with a whole lotta lights on. 

City of Hope Party

 

 

This was a really special treat for the kids, the City of Hope did a fun Halloween Hosted by Disney.  This was a welcome bash for the kids.  It was festive and loaded with little exciting booths for the kids to check out. Everything was all mini size just for kids.  The hot Dogs were just 2 inches in a itty bitty bun.  The kids each got a book,  I think that was the boys favorite part.  They even had costumes, the two littlest kids got one, they had run out of big ones for the Mr. Blue Eyes and his older brother but they did not seem to mind.  It was so nice because  honestly I have not even felt like having Halloween this year. It was tender to see kids pushing their chemo carts enjoying the party.  We even saw one getting a blood transfusion.  It pulled at my heart stings.  I am not sure how but they seem to know just what a family needs that has been through or is going through this ordeal. 
Thank you Disney and City of Hope.  

BIG Day OUT!!!!!

A day out in the open air at Sea World.  We met his Aunt Meagan and Uncle Jordan there who are visiting from South Dakota.  So great for the entire family but especially for Mr. Blue Eyes. 

Mr. Blue Eyes next to the Magnalodon shark jaws.  He tells me that they could of eaten an entire minivan!

Look closely you will see our little baldy on the front row! SOAK ZONE FUN! Yes all drenched and loved every minute of it.

This was the favorite part to the day!  Petting and feeding the Bat Rays!  I thought Mr.Blue eyes was just going to jump in the pool.  He and his brother were soaked because they were having so much fun.  We spent 45 minutes there. They let the Bat Rays suck on there fingers and arms. Giggles and great joy are a the only way to describe the fun had here.   As a mom this was a tender moment.  Our son survived this disease and he is living, truly living.  He is on his way to be a normal 9 year old boy.   

 

(Click image to view larger)

" I know that head"

We made a quick trip to the store and I brought Mr. Blue Eyes.  We had just grabbed some orange juice when a lady came up to him and said,

" I know that head, I have had one!" 

This stranger talked to him told him how strong and cute he was she hugged him twice and rubbed his head.  They shared there types of cancers and we said goodbye.  As we walked away Mr. Blue Eyes said " Mom do we know that lady."  I said no but she knows something about you." 

As we were checking out I ran into her again.  I shared with her that she was incredibly sweet and it meant a lot to us for he to visit with him.  She shared that 10 years ago when she was fighting cancer she was in an airport and a stranger hugged her and did the same thing that she had just done to Mr. Blue Eyes.   She said that the hug and support had meant so much she always hugs those special bald heads now.  She hugged me and said "stay strong everything's going to be ok."  I said "yes I know (my eyes brimming with tears)  I am just still a little raw from everything." "It just takes time...." she said.....

Touched! LOVED! Supported by a stranger! AMAZING!  A lesson on not being afraid or living in fear of what is in front of you.  What if she had not said nothing...... it is uncomfortable to know what to say for a lot of people but big smiles and conversations offer so much.... a reminder to be strong enough to get uncomfortable and reach out to others especially to the bald heads.

To the Dermotologist at City Of Hope

 

 

Above is the final scare
Below are the pictures May through Sept. of the wound.

(Click photo to view larger)
This was a special apt.  Mr. Blue eyes started with Dr. Jung in July with his first apt.  She is the doctor that took the Biopsies on his side.  She told him that she tells adults about how brave this 8 year old boy was getting his biopsy's done.  She told us to that if this scare were elsewhere we would do surgery but since it is located discretely that we will just leave it alone.  Mr.Blue Eyes was happy about that! 

INSPIRING VIDEO AND STORY!!!

My sweet cousin sent me this link.  I was so touched by the story and video. It is a must see!  I love these brave kids and awesome care givers.
Video Of Staff, Patients At Minnesota Children's Hospital Goes Viral | LEX18.com | Lexington, Kentucky

Talented Mr. Blue Eyes

Everyday I have Mr.Blue eyes work on some homework.  Not his favorite activity.  Today I caught him writing on his cursive sheet with his foot instead of his hand.  It is so fun to be reminded everyday of the joys of BOYS.  It was a good laugh and I then I am just trying not to Yodel really loud at him  or  LOOOOOSE my mind.  Getting homework done is such a chore.  He will not focus....... MAYBE THE CHEMO ATE HIS BRAIN.... 

We are truly not to worried but grateful to have him grateful he is in remission. 

Life is full of fun and loosing our minds even without cancer.

Being BRAVE because of you

My little Mr. Blue Eyes has made me be a stronger person.  He has helped me build courage and have more vigor and passion in my life.

I think that is why often our life experiences are our greatest teachers.

I am not the same and never will be.   I was not going to share this but I am documenting his journey.  He has reminded me several times how he has helped me to be brave with this particular thing.  I shared it with him after the first procedure.  I told him that after all we have been though with him this seemed smaller than it used to be. 

Prior to cancer becoming a high priority I had booked three necessary  procedures for Edovascular Laser/ Phlebectomy's.  It  would total eight hours of procedures on my legs in 4 weeks time.  The recovery from the last is 3-4 weeks after the last procedure. To my surprise as it approached I was not worried or stressed.  I had my hubster dump me off at the curb and a friend pick me up when it was over. 

 Yes I am a little crazy for doing this at this time but I am of the mind set to just

get all of it over with at once.  

So I did and it has been hard to be a gimp and living with pain. 

However I am OK and will be much better when i don't look like someone beat me. 

So I lay in the sun grateful for a little boy who taught me I can do hard things to be 

braver today than yesterday.

So though I am a gimpasaurus I am glad I had this little brave child of mine and a 

loving Heavenly father who touch my soul and let me grow.

Why

I am sure as time goes on we will truly understand what this quote says and means to our family.  

The dust is settling from the storm we are feeling a bit of the sun on our backs again, we are finding our new normal! 

It has been a hard journey one that has changed us and strengthened us in many ways.

Last Friday I found out that a dear friend has breast cancer, another is getting a divorce another lost her baby at almost 19 weeks along in her pregnancy.  My heart is already raw and now is so sad.  How could so many things be happening all at once to all these great people.   I found great strength in a comment a sweet friend had left on this blog.

 "God reveals Himself and His way to us in such unexpected ways..You are so loved. Rest in Him knowing that He NEVER leaves you or forsakes you no matter what it looks or feels like. Rest and let Him heal you! "And we know that God causes ALL THINGS to work together for good to those who love God, to those who are called according to His purpose." 

So we offer faith, support, friendship , prayers & love....

Catching you

 

Over the weekend Mr.Blue Eyes little brother was trying to learn to skate.  Maybe we should say trying not to kill himself.  He was saved by his older brother several time! LOL!  These two are sweet buddies!

Supported

 

 

 

At the  end of his treatment this is what his bedroom door looked like.  I hung his cards and anything he got from friends or primary kids from church.  
Lot's of love here.
He also recently got a poster from his school and a giant whale card from his class along with some school gear.  Very touching and sweet!  He goes to the dermatologist  about his scar next Friday.   I will request a blood draw to see his numbers before we make concrete plans to go back to school.  He currently does not want to go back. I know he is not ready but the time is coming.   He does not want to go until he has hair.
Sweet boy that cute bald head of yours is not getting hair that soon! 

Faith

This weekend we noticed 5 little fuzzes on Mr. Blue Eyes head.
Time for  a shave!!!!  
I told him we will shave it until we see lots of fuzzes growing up.  This weekend was a wonderful church Conference that we watched with the kids on the Internet from Salt Lake City.  His favorite talk was by President Thomas S. Monson. If you would like to read it it just press on the name.  It is  about  Our Heavenly Father(God) and how he knows that we learn and grow and become stronger as we face and survive the trials through which we must pass.
I highlighted this for him so when he looks back someday on this journey and new challenges he will face he can always draw strength from these words of wisdom.

Time with a bald head

We are not seeing any signs of the Return of the Hair.  That does not stop us from having a little fun.  This sticker was from the face of a digital clock.  So awesome! I am thinking by the date on Mr. Blue eyes head he will have some good fuzz.
He seems to be feeling a little better. We have still been very careful about outings and exposure to others.  We are just keeping him home. We will consider school in the next couple of weeks. Hoping his blood count is climbing back up.

Prayers of Thank You

It has been profound for us to discover how many people have known of Mr. Blue Eyes' journey. Many people have said they have prayed for him every day. That has touched our hearts so deeply, that others have prayed for his healing. I have never felt such a sense of pure gratitude for the hearts and love and thoughts of others. My prayer for each of you is that God will bless you with all you need. Thank you for being selfless and praying for our Mr. Blue Eyes.
Life can be hard, and one of the best ways to handle that for us has always been through prayer. Something profound happens when you pray. We have learned that prayers bring love, healing, strength, comfort and, when God wills it, miracles. We got to pray last year for a baby named Liam who could not walk, and now he does. We have also prayed for Darrin McCleve and Cousin Karl, who had cancer. Cousin Karl is looking as healthy as ever, and Darrin joined the ranks in heaven last December, he will be missed.
It was a great teaching tool for our children and a blessing to all of us.
Thank you!