2 years from diagnosis

It has officially been two years since we first heard the term Retinoblastoma.  We have had many high points and many low points.  Moments when we thought we could not find the strength.  But i as I sit here writing this today,  I can hear Peyton and her Daddy talking and laughing as they lay in bed suppose to sleeping.  I am reminded what Cancer did not take from us.  Peyton's laughter, wit, and mischievous smile. 

We often reminder dates that have bad memories.  September 14th - diagnosis date.  September 20th - First appointment with Dr. Shields - hearing stage D cancer.  September 21 - First EUA September 22nd - first chemo treat.  February 10, 2012 - Removal of her eye.  But her journey has been filled with so many great dates as well.  November 19th - last day of Chemo,  February 15, 2011 - no visible signs off cancer.  May 14, 2011 - Genetic testing - cell mutation isolated to eye.  and on and on for a year nothing but good news.  Great news.  Even after the February 10, 2012 nothing but great news.  The pathology report cancer was dead no cancer cells.  Life is filled with great dates.  Ordinary days that are blessings for each of us. 

Anyway,  back to where I was going with all of this.  We found yourselves sitting in Dr. Varenhorst's office today.  Peyton eye was having tons of discharge.  The socket just did not look quiet right.  Hoping for an infection but secretly fearing the worst.  Feeling once again all the emotions we felt two years ago.  Praying for the worst diagnosis to be an infection (I know right). 

The good news is that it is just an infection.  She can not wear her prosthetic for two days and we have to do eye dropes 4 times a day.  Other than that, Life goes on.  One day at a time. 

Also, some good news to share.  Phily trips are now yearly with folow up in Wichita in 6 months.  YEAH!

Thanks to all who have prayed for Peyton and those who have seen us all through the dark times.

Angela Adams

Back to Philly

Peyton, Rich and I made our way to Philly again today.  This is a fast trip for us.  We flew out at 6:30 am today and will fly home tomorrow at 6:30 pm. 

Peyton will be seeing Dr. Shields tomorrow for her first office visit with Dr. Shields.  Rich and I are a bit nervous about the office visit process.  We had hard some horror stories about being at the office all day and not getting to see Dr. Shields.  We are praying that this is not the case tomorrow.  Since we plan to be back at work and school on Wednesday. 

So here is a brief recap of what seems to be the shortest summer ever. 

Peyton had her wish granted from Make A Wish in June.  We had so much fun on our 6 day break from reality.  The highlight of Peyton's trip was getting to meet Snow White. 

She also love Animal Kingdom and had already decided that a trip back is a must.  I think, however, that going to Disney as a wish child has created a monster. 

We got in Philly early this afternoon and decided that we would try to take in some of the history of the city for the first time ever.  Even though we have been here 12 times. 

Peyton saw the line for the Liberty Bell and said "Let's just cut.  I'm cute.  They will let me"  Well, since that wasn't going to happen.  Peyton decided that the Liberty Bell was not worth waiting in line to see.  So maybe next time.

We were able to make a stop to see one of Peyton favorite recovery nurses at Jefferson Hospital where she had her chemo surgery.  Nurse Rich stole his way into Peyton's heart and Peyton did the same to him.  We were able to share memories about Nurse Rich sneaking Peyton sprite even though it was not on the dietary menu.  He also show us a picture he carries in his cell phone of Peyt on her last visit for chemo.  It made me cry like many of the nurses and people we have met along the way make me do.  We have been truly blessed to meet such wonderful people who also care so deeply for Peyt.  We took this picture today so Nurse Rich had a picture of the cancer free Peyton.

Peyton has already attended three days at her new school and seems to be loving it.  It is quite a bit more structured than her last school, but I think it is just what she needs. 

I think that about wraps it up.

Please continue to pray for Peyton.  Although she is not going under anesthesia tomorrow, we need her to be a good listener and helper for Dr. Shields and her team.

We will post more when we have some news.

With love,

Angie, Rich and Peyton

The New Chapter

Okay, So I know, I am the world's worst blogger.  I was hoping to write more ofte especially for Peyton, but Life just keeps getting in the way.

It has been four months since Peyton had her eye remove and almost 2 months since the prosthetic.  She seems to be doing great and hasn't really missed a beat.  She recently had a small accident on the playground that put me in total panic, but all kids get a black eye sometime or another.  I find myself asking "Is this something I would react to (over react), if she did not have a special eye."  And the answer is always, "But she does!"  One day I know that all the bumps and bruise of childhood will pass.  I sure hope my heart can handle it.

Peyton is about to finish kindergarten.  She has learned so much this year.  It seems like math and science are her favorite subjects.  Should have guessed that with all the time she spends with Grandma EE (Letha)  :). 

We just attended Peyton's spring musical.  She got to do a special dance to one of the songs.  I can't believe how grown up she looks.  My baby is definitely not a baby anymore.  There are 8 days of school left then I will officially be the Mom of a First grader.  In 16 days, Little Miss P turns 6!  Wow!

It seems as though the summer is already packed full of fun adventures.  Peyton will be attending Camp Asbury at the church.  Make a Wish has granted her wish and we will be heading to Disney in June.  She can not wait.  I still don't know why but she is obessed with Snow White.  We also need to head back to Denver sometime in June to have the prostethic looked at for size and shape.  Rich and I both think that a little tweeking is in order.  We see Dr. Shields in August right before school starts.  Dr. Shields seems to think that Peyton is ready for office visits.  I am a little nervous, but she is the expert. 

Thank you all for your continued prayers and support.  In those dark moments, it is an awesome feeling knowing that so many people are pulling for Peyton.  You all have been a wonderful support group, great prayer warriors, and the loudest Cheerleaders.

I promise to be better about writing in this blog.  I want Peyton to have a log of her journey through cancer. 

Oh, one more thing.  Peyton has an amzing sense of humor about all of this.  "I saw it with my own eyes, well this one anyway."  about something she just had to have at the store.  It is hard to be down in the dumps when Peyt creates humor in every situation. 

With Love,

Angela

Great News to Share!!! Flying High

Peyton got some great news this week.  The pathology report came back on her eye and there are no active cancer cells.  YIPEE!  Peyton is officially CANCER FREE!

Also, Dr. Shields office called and Peyton no longer has to do EUA's.  She will be doing an office visit with Dr. Shields in August.  No more anesthesia.  WOOHOO!!

Peyton's Grandma and Grandpa Warran wrote a song for little Miss P.  It is called Rosie.  That is Grandpa's nickname for her.  The lyrics were written by Joyce Warren and the song was composed and sung by Richard Warran.  Grandma Joyce put the the pictures and song together so I could share it all with you.

Here it is:  I Call Her Rosie

I hope you all enjoy.

Having a great week,

Angie, Rich and Peyton

Update on Peyton

Peyton is doing great.  Everything with her eye seems to be fine.  No complaints from her so all is good.  We are stilll waiting on the pathology report and are hopeful to hear some news early next week.

Peyton will be going back to school on Monday.  We are going to bling out some patches for her to wear while she is at school.

Peyton will see Dr. Varenhorst on March 16th to see if  everything has healed correctly.  Then on March 19th we will head to Denver for Peyton's appointment with Walter Johnson, the Ocularist, at Denver Optic.  We have seen first hand the amazing work he does and wanted to make sure that we sent Peyton to the very best.  If you are interest the about the process, his website is www.denveroptic.com.

I will try to be better about updating everyone on the good news, not just the bad.  I have hoped one day of turning this blog into "Funny things my Kid says".  She is full of great material.  I need to start writing them down, so I can share all of her wisdom with the world.

Thanks for all your prayers and support throughout all of this.  We couldn't make it without all of you.

With Love,

Ang

Peyton made it

Peyton's surgery went great.  Dr. Shields said the tissue and socket looked great.  It is a 6 week recovery.  Then we meet with Dr. Varenhorst at home and find a ocularist to paint Peyton a beautiful new eye.

As I type this, Peyton is sleeping off the Morphine.  Every once in a while she pops up with a witty remark about a conversation Grandma and I are having.    This girl never misses a beat.

We are headed home tomorrow on the 6 am flight.  We should be home in time to have lunch in Wichita. 

I am in a much more settled state.  I can now say the Peyton is truly CANCER FREE!  I know that in the coming days there made be some very hard questions.  I may have some of my own, but I am in a peaceful place.  I can tell Peyton that we all fought for her beautiful eye, but God has a bigger plan for her.

Please continue your prayers for sweet little P.  She is braver and wiser than any 5 year should ever have to be, but all of your thoughts and prayers will continue to guide her.

Love to all of my great prayer warriors.  I could not have done this without all of you.


Ang

Peyton is Amazing

So I finally found the words.  I told Peyton that she was going to have surgery tomorrow and that she would wake up with a big patch over her left eye.  She asked just to make sure that is wasn't going to be on the eye she could she out of.  Once I reassured her that is was the other eye that she couldn't see out of everything was great.  She asked if she would have to go to school with the patch.  I told her that we would be out of school for a while, but we could go talk to her class. 

Basically, the conversation ended with "after surgery can I have whatever I want to eat?" 

Everyone said this would be harder on us.  Guess that is the truth.

Relieved for a minute in Philly.

Ang

How do you say it

We spent the day doing Peyton things.  The hotel has an indoor pool so we swam a little.  She also wanted to get outside and explore Philly.  We walked to Washington Park where the tomb of the unknown soldier is laid.  Thought we would make the extra few blocks to the Liberty Bell, but Peyton was done with all the walking. 

We made it to one of her favorite eating places, Cosi.  She downed a banana parfait, a banana, and fruit cup.  Tried to get a peanut butter and jelly in her, but no luck.  Maybe tonight there will be another swimming session.  Who knows.  It is Peyton's day. 

As I sit here in the hotel.  My thoughts keep drifting to how in the world I will ever find the words to explain to Peyton what is happening tomorrow.  She knows that she is having surgery again tomorrow, but HOW do I tell her.

I sit here and mourn her beautiful blue eye.  The ONE I gave her.  The special Gilllaspie Blue that changes the color of blue based on what color she is wearing.  I know in my heart that this means that CANCER is completely gone.  Her journey to recovery will be smoother.  All the trips to Philly will come less often.  But her beautiful Blue Gillaspie eye. 

What are the words?  How do I ever begin to explain?  I know that God will give me the strenght.  He will give me the words.  I just keep thinking How can I be the strong one?  She needs me more than ever to be. 

The words that have not come yet without tears. 

Peyton's Surgery is scheduled for 10:15 tomorrow.  It should take a little over an hour.  I will keep the blog updated as time allows. 

Please continue to pray for my sweet angel.  Her new story is just beginning.

With a worry heart and a racing mind,

Ang

We Lost the War

Today's visit brought some very unexpected news.  Peyton has developed a cataract in her left eye (the bad eye) which makes it hard to see if there is any tumor regrowth.  Dr. Shields explained that since the Peyton since Peyton had no vision in the eye the risk of removing the cataract was greater than the reward. 

We had the very difficult decision made for us.  Dr.  Shields said the only option was to remove the eye.  Peyton has been scheduled for the enucleation on Friday here in Philly with Dr. Shields.

Please pray for Peyton.  Please pray that she understands why all of this is happening.  Please pray for Rich and I.  We will be needing all the strength we can get through this time.  Explaining all of this will be one of the toughest things we will ever have to do.

Bummed out in Philly,

Ang, Peyton and Grandma EE

And the waiting begins or continues

Here we sit at Will's Eye, waiting.  Peyton's appointment was scheduled at 11:45.  It is 12:30 here and we are still waiting.  I guess I should be happy that the "I'm hungries!" haven't started.

We met a family from Kentucky that has been battling RB since their daughter was 5 months old.  She is now 3 and in her second round of IAC.  They waited for almost 2 hours past their appointment time to be called back.  YUCK!!!!!

As I hear their story and the story of many others facing the long road that is RB.  I have to stop and remember to count my blessings.  We have been blesses to date that only one eye has been affected.  We have been blessed to date with no relapse. 

So we sit here and wait.  Sit and hope.  Hope for continued good news for all the family affected by the terrible cancer.


Just waiting,

Ang

Back in Philly

We made it with no delays.  This may be a first.  

Peyton's appointment is at 11:45 am tomorrow.  I am hopefully that we can get her to sleep in and not have to fight the hungries in the morning.  Here is to hoping anyway.

All Peyton wants to do is going swimming.  That will probably be a Thursday event.

So glad to have made it here and praying for a good report tomorrow.

Thanks to everyone who is praying for us in this journey.  We couldn't do it without you.

Angie

Headed to Philly

So it has been forever since we have updated all of you.  It seems like life gets busier by the second. 

Peyton and I are headed back to Philly for her checkup.  I will keep you all posted on the results.

Please prayer for my sweet little girl. 

Thanks a bunch,

Angie

Back in Philly

We finally made it to Philly even after a cancelled flight and a 6 hour layover.  It was a very long travel and an arrival in well after Midnight.  We were blessed to have a later appointment today and Peyton was able to sleep in a little. 

Now on to the details of the exam...

Dr. Shields says the tumor is 100% regressed and Cancer Free. The scar tissue from the tumor is now about the size of an eraser.  When we started all of this the tumor was the size of an adult thumb.  We have been hoping the her retina would reattach, but were told today that the hope of her retina attaching was very slim a this point.  To be honest my heart sunk a little when I heard the news that she would probably never see out of the eye, but then my head kept saying "SHE IS CANCER FREE!"

Dr. Shields would like us to have a follow up with Dr. Varenhorst in 3 months and then back to see her in 6 months.  We will be doing another MRI in a month as a precaution because Peyton has been complaining frequently of headaches.  Dr. Shields think that she is still trying to use the eye and that is why the headaches are coming, but better safe than sorry.

Tomorrow is a fun day in Philly filled with only things that Peyton wants to do. 



Thank you all again for all the prayers and support.

With love,

Ang,  Peyton and Rich

Summer Is in Full Swing - Peyton Update

Summer has officially started in the Adams House.  Peyton is playing T-Ball and has made many new friends.  She is also attending Asbury Preschools full time program this summer and loving every minute of it.  She is learning a lot of fun stuff too. 

Peyton, Grandma EE and I are headed back to Philly July 12th for her routine check up.  I am sure you all know that these check up are just to make sure that Peyton's tumor remains dead and that there are no other problems with her eye.  We hope that with the nicer weather we will be able to take in some site while we are there. 

We are so thankful for all the prayers and support.  Please say an extra one for Peyton on the 13th.

With Love,

Angie, Rich and Peyton

Preparing for Next Trip

We haven't had much to update as of late.  Peyton still has no vision in her left eye, but seems to be coping quite well.  She has been getting some headaches as of late, so we will be sure to monitor closely and speak with the doctors about this when we return to Philadelphia.  The pediatrician in Wichita finds nothing else wrong at this time.

We have another long trip to Philadelphia in July.  Angie is preparing to make the flight and stay arrangements.  Rich has been working on some more fundraiser events, with the possibility of a golf tournament.  We have tried working with many cancer organizations, but it is completely impossible.  We have completely given up on getting our flights paid for!  The roads are endless with these people and it seems like many of these organizations are not as helpful as they say they are!  However, we are extremely grateful to our family and friends, the Ronald Mcdonald House of Philadelpia, the Ronald McDonald House of Wichita, Michael's Way of Philadelphia, Asbury Church, and John T Arnold & Assoc.  (Hope I didn't forget anyone)

We ask that you continue to pray for Peyton's health and for continued strength with Mom and Dad.  We truly appreciate all of our family and friends who have supported us during what a been the worst year of our lives.

With Love,

The Adams Family     

Genetic Testing

We finally received a verbal report of Peyton's genetic testing.  Based on the findings Peyton's cell mutation, which cause Retinoblastoma, is isolated to her eye.  That means that the cancer cells are/were only present on that gene.  She is also no more likely than anyone else to develop other cancers.  This particular genetic testing is 90% accurate.  We should have the written report this week and I will post more detail.

We will head back to Philly in July for her routine checkup. 

On a lighter note, Peyton has a lot of things coming her way in the next few weeks.  She is preparing for her graduation from  Asbury Preschool.  There is a week full of activities to mark the end of this chapter.  We also will be celebrating her 5th birthday, and T-ball starts next week. 

Thanks again for all the support and prayers for Peyt.

Angela Adams

Good News



Peyton recovering from MRI sedation



I am a little behind on posting the results of Peyton's latest round of testing.  We finally got the MRI scan results.  Peyton is still officially CANCER FREE!  We will be heading to Philly sometime in July so the doctors there can evaluate the remaining "dead tumor" in her eye.

We are still waitng for the results of the genetic testing, but given the timeline we should be seeing them anytime now.  When I know something, I will post the news.

Life continues to be busy as Preschool is winding down.  Peyton will be graduating.  Yes, I said graduating from Preschool on May 26th.  This month is packed full of fun activities for the kids as the prepare to embark on new chapter, Kindergarten. 

Peyton will also be playing T-ball this summer.  For those of you who know me well, pray of patience and understanding in this noncompetitive sports adventure.  Hopefully, I will NOT be one of those parents. 

Peyton will also be turning 5 this month.  I cannot believe how the time has flown by.  She is super excited for her party and especially excited to see her Aunt Tina and the boys who will be here for her birthday.

I cannot ever say this enough.  Thank you all for your prayers and support through this journey with Peyton.  I truly believe that each and every one of you held us up during the hardest moments in life so far. 

God Bless,

Angela

Peyton's Latest EUA

Peyton went under anesthesia today at Wesley Hospital in Wichita.  Dr. Varenhorst did his exam and all went fairly well.  The tumor and seeds all appear to be dead still.  However, her retina is STILL not re-attaching.  The doctors are pretty much saying that we need to understand that it is most likely not going to happen.  Dr. Varenhorst agrees that the patch procedure is not a great idea with Peyton.  With that being said, he is going to confer again with the doctors in Philadelphia, and they will come up with a plan. 

Peyton was a trooper once again, and has made so many friends at the hospital.  Mommy and Daddy surprised Peyton with an early Easter basket of goodies and a life-sized Dora balloon.  She was soooo excited.

A special thanks to Dr. Varenhorst who has been ever so helpful during this whole process.  Also, a special thanks to Pastor Jerred for spending some time with us this morning.

Now, we have an MRI on Monday and a trip to Philadelphia in two months.  Thanks to all for the continued prayers. 

The Adams Family

The News

Today started the long list of appointments Peyton will have in the month of April.  We met today with Dr. Whitfield, a pediatric opthamologist.  The basic point of this appointment was to have a baseline for her vision in the left eye.  Dr.  Whitfield's diagnosis was what we expected.  The left eye does recognize light.  He is doubtful on the motion. He is not recommending that patch her right eye in order to strenghten the left because she is legally blind in the left eye.  It was a little hard to hear "legally blind".  I think that is the first time that term has ever been used by a medical professional.  

The good news is that Dr. Whitfield thinks her eye is beautiful.  He said with all the treatments she has had on this eye the lens, viens, and structure are is great condition.  Basically, the main hurdle is getting the retina to reattach.  This is a waiting game and only time will tell.

Peyton will also have an Examination under anesthesia on April 19th with Dr. Varenhorst.  This appointment will determine if the fluid from the tumor is still dissipating and if the retina is continuing to attached. 

Dr. Rosen would also like to have another MRI performed sometime in April.  This is really just a precaution to make sure that this aweful disease is no where else.  We will continue with MRI's every 6 months. 

We will be going to Philly soemtime in June or July for routine follow up with Dr. Shields.  We are hoping that we can finally take time to enjoy Philly.

On a nonmedical note, Peyton is doing great.  She is loving school and on most days she is a typical almost 5 year old.  We are gearing up for the warmer months.  Peyton will be playing t-ball and hopefully taking swimming lessons.  Still trying to convince her about swimming. 

We have been truly blessed that Peyton has been able to remain so strong throughout all the doctors and treatments.  Her only question about this appointment today was "are they going to have to poke me today?".  I can't believe that only thing through all of this that gets her upset is the blood draws. 

Thank you all who have prayed and continue to pray for Peyton, Rich and me.  We would not have had the strenght without each and everyone of you.

In His Love,

Ang

Peyton's Commercial Debut

As promised, here is the promotional video Peyton was in for the Ronald McDonald House of Wichita.

Peyton's Ronald McDonald Commercial