Can you help???

Please if you could, pray for Gabby Vogel.  http://getwellgabby.org/  Calli  and Gabby were diagnosed around the same time.  Please pray for this child, and her family.  Please if you could take a little time and read about her journey.


September 1, tomorrow,  is Aidan's birthday, we will miss it, because we are still in the hospital.  My heart is grieving right now, I want to be there for my son, I want to spend much missed and much needed time with him. 


Calli is starting to eat, and her blood pressure is coming up.  Praise God!    Thank you for continuing to think of and pray for and speak life and blessings over our child.


September 1, tomorrow also marks the beginning of Childhood cancer Awareness month.  While I think it is great to see pink ribbons on nearly every item at the grocery store recognizing breast cancer, I cannot help but see the lack of awareness and fundraising for childhood cancer, and support for the families going through it. 


I have some ideas, maybe you all can help some families and raise awareness....  get some co-workers, or friends, neighbors together a ot of people doing a little bit turns out to be alot of help!

• Put on a gold ribbon- that is the childhood cancer ribbon color!   Wear it all day all month, and when people ask you what it is for, tell them!  Wear it for Calli!
• Think of what you can do to help- and do it!
• Host a lemonade stand- go to http://www.alexslemonade.org/ they will give you everything you need!
• Possibly start a fundraiser for a family that you know of who has a child going through treatments...arrange all the details, raise the money and give it to the family- they need it over and over again to help with the expenses...and they cannot help or give you ideas- they are too busy, minds too bogged down...
•   Make some "no sew" fleece blankets for the kids going thru treatments and drop them off at CHOP, if you don't want to run down to Philly, make them and send them to me and I will get them here!  here is the easy pattern:  http://www.allkindsofbabystuff.com/no_sew_fleece_blankets.html
• Do you crochet?, knit? start making some chemo caps, but please make the holes small (no child wants their bare head to peek thru the holes)
• have any old t-shirts?  Can you sew?- here is a quick and cozy hat- My aunt made Calli one and she wears it every day!  It is by far the most comfortable of her hats- You can make it bigger for bigger kids, by just making the outline bigger.  try it!!!     http://comeonilene.com/2011/04/20/the-great-striped-shirt-challenge-baby-hats/
• Make a gift bag/(from dollar store) or basket of much-needed toiletries  for an unexpected hospital stay- shampoo, conditioner, razors & shaving cream, deoderant, socks, body wash, lotion, socks, hair brush, hairbands, toothbrushes and toothpaste, a pen and a paper pad, and some nice smelly spray.  Pareents are often admitted after a trip to the er for leg pain...a belly ache...a head ached...and in Calli's case- back pain...and it turns out to be leukemia..or rhabdoblastoma or in Calli's case- Glioblastoma Multiforme.  They are often here for days, sometime weeks with the same socks on.   
• Gather some socks and underwear of all sizes ....kids, mommies, daddies, and (NEW PLEASE!), dand send them to me, they are needed here, again when you are admitted and have nothing.

Make a goal and keep it!  Even if you  only made 5- it helps someone!!!  

We wil be here again soon, on a weekly basis so I can give them to the social workers here to give to parents on the floor...they are used up so quickly too!  Please if you are interested in doing one or all of these, contact me at michaelluvslucy@gmail.com

Mostly, please believe the best, and pray for the families you know affected by childhood cancer! We have learned from other families as well as our own experience, that it is best if you do not call and say "Tell us what to do, how can we help?"  becasue we are often bogged down with so much, and our minds are not thinking as straight as we like, and it is hard to ask for help...rather it is best to just think of something that may need to be done and do it!

Thanks so much for all the support you have given us!  We are so truly thankful for you all stepping up in our time of need.

Blessings!

Lucy

Hospital again...no really...again...but, it is well

Well, we are back in the hospital after being home for two days. God is good, I have had some very sweet time of fellowship and worship with Him, as i laid with Calli in her bed the last two days. Her head hurt so bad, so i just started humming and singing some old hymns that I love. Then I began to sing and pray in the spirit, and was just so comforted, and strengthened by God's still small voice. It is better than any valium, or anti-anxiety drug out there.

She will be ok, is having some radiation somnelence side effects at the same time as an infection, and justs needs some xtra TLC, fluids and IV antibiotics. If you have never listened to the old hymn called "It is well," I encorage you to take a listen, it is my favorite....well one of them, i can't post any right now, but I love qhen the Isaacs singvit and second chapter of acts

This is not how is should be...but God isin Control

an update on Calli:  She is not really eating, her tummy is barfy-feeling; but she is drinking a lot.  She is sleeping around the clock, and I bribed her into letting me take this picture of her with this hat that I crocheted for her while she was sleeping.  

Her cheeks are nice and rosy from the fever.  Not much has changed, she is still having spikes of really high fevers, but the Tylenol keeps them tolerable at 101-102.  We now know that Calli has a kidney/bladder infection; and the bacteria that is causing it is resistant to the antibiotics they have been giving her since Monday.  

The doctors have sent more cultures to the lab, and because she is drinking enough and they can't do much.... and a hurricane is coming...he gave us a choice of waiting another day in the hospital for the results, OR sending us home with another antibiotic that hopefully will be effective...

I chose to take her home.  It was hard getting her out of the bed, she just wanted to sleep and rest, not drive the almost 2 1/2hours it took to get home in the evacuation traffic.  Mike wanted us to be home before the hurricane hit anyway.  He was wondering what would happen if the Schuylkill flooded (which is a few blocks from the hospital) and he reminded me that our Suburban was several stories under the ground......ha ha

While it was not exactly where we desired to be again, A wonderful thing happened while we were there in the hospital.  Dr. Phillips, the chief of Neuro-Oncology at CHOP, came in all smiles (yesterday) with his brood of residents and fellows following him.  I did not know who he was (there are so many doctors), but he was so excited to examine her and said, "It is so nice to finally put a face to those MRI's." 

You see, Calli is a miracle.  We know this.  Dr. Phillips went on to say..... in not so many words, but more in his facial expressions and examination and was sort of showing her off to his residents.  He was sent to remind me what I already know... she is a miracle, she is extraordinary, she will beat this, she has already beat so many of their odds, defied their assumptions, their facts, their prognosis.  

As he pushed and pulled and tested her strength against his...he beamed.  Looking up as his residents, all smiles, he said, "See she is this way....but should be that way... This is this and that...."   I really had no clue what he was saying at all, they were neuro terms...but he was..... excited and beaming and happy to report that even while she is having such high fevers, weakness, infections and radiation side effects....even while she is barely able to get out of bed...she was strong!  She could walk!  She could move and rotate and push his heavy hands off of her legs in all the right ways you do when a doctor says, "Don't let me push you down."   Then, he said, "Can you walk for me please?"  

Catching on, she went to get up and he offered to help swing her out of bed and steady her, but she politely refused his help and did it on her own.  She walked weakly, wobbly and unsteady to my eyes.....  I mean compared to when she is well, and has energy and not dizzy.  As I glanced over at him, he looked like a little boy all proud of something he made.  He was amazed and told them all to take note of her walk.....  She should not be walking, she should be on pain meds, mega steroids and wearing a brace.  

I commented to him how weak she was, and wobbly and that she walks much better, not to mention that I just took her off the steroids she was on since the end of May.  He exclaimed, that she was walking so well, especially since she was sick, and off the steroids and just finished radiation.

I believe that God sent Calli to encourage that doctor.  It was not the doctor that gave Calli strength, or the meds, or the radiation and chemo...all of those things make her weak.....It was God, it was the strength he gives her, He is our only hope.  

When you are surrounded by half-dying children, babies, teens...when you read about this Glioblastoma...when you read the diagnosis, the reports, the history, studies, and facts that this is a "terminal, incurable" cancer...you can become hopeless.  

But my focus is not behind on the past histories and trials and statistics, it is not to the left or right of me on those others that are so sick and weak and dying, it is not even ahead on what future trials, or medicine they think can help give her..... in their eyes, to buy her some time.  

My focus, my only hope, my eyes are looking up.... To God, who formed her in my womb.  To the God who formed the stars...to my God, my Father who created this beautiful, strong, vibrant and stubborn in a good way, child.  God is our only hope, I am glad that we have not other options!

  Watching her, I know that I was encouraged and reminded of how much God is in control of our lives.  Even while she is sick, weak, and unable to enjoy life....this will pass.  God has a much bigger plan than I could ever imagine. 

I was given a cd

When we do not understand why or how things like this could happen.  When we blame ourselves, and our hearts just want to rewind and do over a lot of things done and said to our children....when we break down and cry and cry and think that life is unfair, that this is not fair, that it should be me, not her........God is in control.  He knows.  His thoughts are higher than ours.  It is too much for my brain to even wrap around, so I will just trust Him.

Here is one of the songs, that just touches the very core of my heart right now.  I encourage you to buy it, listen to each song, each word.  

This is not how it should be
This is not how it could be
This is how it is
And our God is in control

This is not how it will be
When we finally will see
We'll see with our own eyes
He was always in control

And we'll sing holy, holy, holy is our God
And we will finally really understand what it means
So we'll sing holy, holy, holy is our God
While we're waiting for that day

This is not where we planned to be
When we started this journey
But this is where we are
And our God is in control

Though this first taste is bitter
There will be sweetness forever
When we finally taste and see
That our God is in control

And we'll sing holy, holy, holy is our God
And we will finally really understand what it means
So we'll sing holy, holy, holy is our God
While we're waiting for that day

We're waiting for that day
We'll keep on waiting for that day
And we will rise
Our God is in control

  Holy, holy, holy

Our God is in control

Hospital again?

I was hoping to update you all on some of the things we have been doing, but I can't do that from the hospital room.

Calli was admitted today at CHOP. She has been febrile for 6 days straight and off and on since the 4th. She hit over 104 here today. She just got over a virus two weeks ago, and radiation build-up is kicking in big time right now. It took weeks, and is hitting her hard.

My heart is so heavy watching her struggle to stay awake...she should be swimming in the creek, playing with friends....this is not how it should be....It seems we thought we crossed over Mt everest, but it was only the first peak....

Please pray that her fever breaks, that they find whatever it is causing it & that she is able to rest.

Being back here on 3 South- Oncology floor, brings back to the surface many emotions, many
precious moments Mike, Calli and I shared those first days after her surgery....

Thank you for thinking, praying, and believing the best about our family.

FLY EAGLES FLY!

It was late in the afternoon on Monday, when we were called by Kisses for Kyle Foundation, and Shaun Young- ya know this guy:

Shaun is the Ultimate Eagles fan!  He has been to every single home game since I think 1993.  In 2009, He became a member of the Professional Football’s Ultimate Fan Association (PFUFA); He appeared on the 12th Man float during the parade of NFL Hall of Fame induction weekend in Canton, Ohio.  He is genuine, kind and very enthusiastic....you can read more about Shaun in this article.

www.phillyfit.com/Articles/9-07/shaun-young.pdf 

So anyway, Shaun called, and asked if Calli, Aidan and I would accompany him to the last Summer Camp practice at Lehigh, a VIP event.  Would we?  YESSSSSS!!!  It was very last minute, but I love last minute, so I rearranged our schedule, and  we met him on a very rainy soaked morning!

From the get go- Shaun was so kind, giving and humble.  He helped us get Calli and her wheelchair around three football fields, in the pouring rain....to the VIP tent.  Then when he asked if we brought anything for the eagles to sign...I just looked sheepishly at him and said "No."

"No Problem," said Shaun, "I have something for you back in my truck."

He proceeded to run in the pouring rain and mud all the way back (it is very far) to his truck, and came back with two large and beautiful brand new and still in wrap footballs:

Without his makeup :) WOWSERS, thanks for the Footballs!

The kids had so much fun!  They got caricatures done, which are really funny!

AIDAN :)

Calli :)

They got some tattoos, a  green screen picture and we got to watch the practice from literally a few feet behind the players- NO PICS ALLOWED ON THE FIELD!!!

Then...SWOOP Came in the rain :)

After practice, we went back to the VIP tents.  We sat in a totally empty one, while the other two were full to the brim with fans.  They had such yummy food- I am talking gourmet!  Shaun is the man, and because the staff are such huge fans of him, they let us butt in the front of the line, and .... oye I was expecting these Philadelphia fans to give us a boo for skipping to the front, but they were all so gracious and kind.  Then they had a raffle for 8 prizes....and we won two of them!!!  Then we heard a couple of boos...eeks!  We won an authentic Brent Celek autographed football, with it's official certificate of authenticity, and an EAGLES barbecue set and apron :) 

When the players were all done the last practice, some of the players came to the other two VIP tents, and everyone had to stand in line for a long time just to get one autograph......but not us.  Again, because Shaun asked, and is such a humble and giving dude, one by one, as each player was leaving the crowds, they went above and beyond, and made it a point to personally come over to our tent (remember we were the ONLY people in the tent), One by one, they warmly hugged Calli, talked casually, signed our footballs, and encouraged her to keep fighting!  It was a very special moment, I was crying...not because they are super star athletes, but because they were SO humble, and encouraging, and down to earth.  Mike McGlynn especially just hugged Calli over and over again, asked her how she was, told her to keep fighting and that she would make it, he just did not want to go, he kept encouraging her.

Clay Harbor!

He was asking Aidan about school :)  I told him they were home schooled :)

Trevor Laws- I asked him how long it took to grow his dreads :)- 8 yrs

Absolutely sweet and shy Antonio Dixon

Juqua Parker

Darryl Tapp is bowing to Calli- totally sweet!!!

Darryl Tapp

BIG Jamaal Jackson- 325 lbs!

I am Moise Fokou.....

Signing his super awesomely sweaty and wet glove for Calli!

Moise Fokou

SUUUUUUPER SWEET Mike McGlynn

A manly handshake :)

Mike signed BOTH of his super sweaty, taped and awesomely cool gloves for Calli & Aidan!

Merrill Reese even joined in on the fun! 

Calli said she felt so special.  We do not deserve this kindness, these opportunities...but God has chosen us to walk this road, and it does make some of our days  brighter when we get to do these special and awesome things put before us.

Thanks so much Kisses for Kyle Foundation, and Shaun Young! 

We had a super fun day!!!  We all got home, and took a long nap :)  See, even though it rains and you get all muddy- Life can still be fun, and it is so worth it to venture out!

BRIGHTER DAYS :)

 So, Calli & Mike are mostly all better now, just the coughing and running snot leftover!

 Since it had been so long since we had ventured to the Perkiomenville trail, we decided to take a nice little trip with 9 of some of our favorite little people and their Mama, and their dog, and our three dogs!  Wow.  We had a blast!  Calli walked without her walker, 2.6 miles, and up a 12% grade hill with just a little bit of support from  Jesse and me.  We had fun watching the dogs swim, the little ones work so hard to get up the hill, and we even got some great shots around an awesome tree with a huge boulder in the middle of it!  After that, we had a picnic lunch at the park.  We thought we were done our wonderful day, but as we walked back across the bridge to our cars, we heard a beep beep beep behind us!  It was our wonderful friend and "praisercise" instructor Mary Beth Bette!  What a wonderful surprise!  It was good to catch up and say hi since we had not seen her since May!

Can you see the huge boulder Calli is sitting on?  Aidan's right thigh is also resting on it! The tree grew around it!

We were invited by the CHOP oncology clinic to go to the Philadelphia zoo on Saturday night.  They closed the zoo to the public and opened it just for the Oncology kids and their family members.  Calli & Mike were feeling better, so we decided it would be fun- plus- we were never at the zoo at night!  It rained most of the day, and stopped just in time for us to get there in the evening.  Hatfield Quality Meats, was a huge sponsor, and treated all the kids and their family members to tons of food.  Rita's Water Ice was there as well.  We saw many familiar faces from Hatfield, as well as fellow fighters from Oncology.  It was actually nice to go and not be stared at :)  Everyone there has or had some sort of cancer.  We got some great pics!

Calli's lips are super red from her cherry water ice

I do not like little monkeys, but my family does :)

She was TIRED!  Got wheeled by Dad :) Smiley Dad :)

I like little frogs though!

Our Director!

Smile Aidan!

Here Kitty Kitty Kitty.....

HUGE snapping TURTLE!!!  I thought it was fake, then it moved :)

Cool Spider

This past Sunday evening, Calli was invited to meet Cole Hamels, a starting pitcher for the Phillies!  He was super nice, and we got a few pics!

Cole signed 4 cards for Calli

Uber smiles!

Thanks Kisses for Kyle and Cole!

Even though the game was rained out, she still got to see a Phillie :)

More exciting things to come!  I assured the kids, that we were still going to have a great summer, even if most of it was spent at the hospitals....and we are!  We are overwhelmed, and so grateful for the opportunities being placed before us from such willing, caring, & open hands & hearts.  We are thanking God today for the things He is doing and opportunities arising and for using you to put a smile on my 14 yr old's face!

We have but a few short weeks before I must start school with the children.  For those of you who don't know, I have been homeschooling my children for the last 6 years.  We will beginning our 7th year!  It is hard to believe how quickly time flies!   We have some field trips that we would still like to go on before our official start, and before we must be back at CHOP for her second round of treatments.  Still on the list : The Art Museum in Philadelphia, Franklin Institute, & Morris Arboretum.

On another note...We have a wonderful friend who makes these awesome fox hats!  He is only 14!  He lives on a farm, traps the fox himself, tans the hide, and when it is ready sews these hats!!!  TOO COOL!  Doesn't she look beautiful?  We are thinking of paying him to make her one for winter.  If you know someone who would like a REAL Fox Fur Hat like this, send me a message through the comments :)

Have a blessed week!