Today McKenna had her Port (Central line) removed! She did wonderful! It was a simple outpatient surgery. Funny how everything is “Simple” now compared to how Complicated it once was. McKenna’s fight is complete, while we are still on guard because the statistics of relapse are just as awful as the statistics of childhood cancer, we don’t live in that, we live in the day, and we live in all the little moments. And we continue to scan every 3 months. We continue praying for her scans to remain clear, disease free, NO CANCER. Her next set of scans are scheduled for May 29th and 30th.

McKenna & Dr. McMahon

Today McKenna’s final procedure was completed by Dr. McMahon, the surgeon who has done most all McKenna’s many surgeries, biopsy, central line placement, another central line placement, tumor resection and finally her central line removal!

McKenna & Dr. Maze

And Luck would have it that McKenna’s Anesthesiologist today was the lovely Dr. Maze. Dr. Maze has been there for some of her many scans, and every single day of McKenna’s 20 day Radiation treatment, because she had to be sedated each day for that treatment.

McKenna saying “No more Port” as we discussed before bed last night that she would be having it removed when she woke up.

Now when the white strip falls off there will be just another scar to remind her of how brave, strong and miraculous she is! Just another reminder of how with God all things are possible! Another reminder of her faith, our faith, of just a mustered seed. And how we screamed, we cried, we prayed, move mountain MOVE!

Mathew 17:20
He replied, “Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there’ and it will move. Nothing will be impossible for you.”

Thank you all for your thoughts, prayers and support.

We hope for McKenna’s journey to remain encouraging to others. We hope for people to know that sometimes there are good endings. Childhood Cancer deserves more awareness because right now only some children survive, we want MORE children to survive! No child should be resting in peace.

We intend on participating in raising awareness for Childhood Cancer and certain organizations, such as Children’s Cancer Network and Phoenix Children’s Hospital. There are many foundations in existence who all want to raise awareness and funds for a cure. At this time we do not believe that creating another foundation would be beneficial considering there are already so many that exist. We all hope, pray, fundraise and research for a cure. We believe the best way for these goals to be met is if the many groups/organizations would come together as a whole and create a unified organization. In short we are all about teaming up and making a movement MOVE.

As for McKenna she is one week away from having her port (Central line) removed. It is a minor outpatient surgery. She is a pro at those. It has been four months since her last round of chemo. The surgeon who will be removing her port is Dr. McMahon. Dr. McMahon is the surgeon who did McKenna’s original tumor biopsy 2/9/2010, when McKenna’s journey and fight began. That was the procedure McKenna could not recover from and prompted her two month ICU stay because McKenna’s tumor was too large and her little body could not breathe on its own. Dr. McMahon also did McKenna’s 7.5 hour tumor resection surgery in July of 2010. Dr. McMahon was able to remove about 95-97% of McKenna’s tumor at that time. We will always remember how she explained it to us as “A grapefruit, 3 golf balls and then some”. Keep in mind chemo had shrunk her tumor by 80% before the surgery… So it was a very large tumor to begin with! Words cannot express the joy that we feel in being able to end this journey with the same surgeon we began this journey with. We pray Dr. McMahon will be preforming McKenna’s Last surgery. We have been blessed to have a very supportive team through all of her treatment. It is bitter sweet to be leaving their services, but we will visit, send cards and see them around.

We continue to Praise God for his glory in McKenna’s health and every day on this earth.

McKenna is enjoying many first and many things she had not been able to do. We would love to continue sharing these moments and photos with everyone who has followed her journey and everyone who wishes to continue following her journey.

McKenna’s first class field trip to the Farm. One of many places you cannot go when getting Chemo.

A precious smile. A day at one point we could only dream of. God is AMAZING.

Her very first time Bowling. She had a really great time! She actually got 3 spares! Yes mom and dad did help her roll the ball and of course the bumpers where up!

McKenna’s friend Lucy’s 5th birthday party on a farm. Which McKenna is insistent on having her next birthday party at the farm too. But that wont be until November so she might change her mind, or not. She really loves the farm.

Thank you all so much for your thoughts, prayers and support along this journey.

This is McKenna participating in the Children’s Cancer Network Survivor walk over the weekend. She had a great time!

So Friday we found out McKenna’s scans where clear! She remains N.E.D. No Evidence of Disease. The CT did appear to show a little cluster of vessels called a hemangioma. This did not show on the MIBG or the PET so it is not believed to be  a concern. Dr. Eshun (her oncologist) is not worried about this. He does want to monitor it with an ultrasound of her abdomen within the next few weeks and a follow up ultrasound in another month.

McKenna is also going to be having her port removed within the next few weeks! She is also all ready to return to her Pediatrician for her care! She will continue to get scans every 3 months. However, if she is sick, she is considered a sick kid not an Oncology sick kid! McKenna is done taking her antibiotics on the weekends (post Chemo Protocol) she will only be taking her vitamins and probiotics no more prescribed medicine!

McKenna has big changes in her bright future! It is bitter sweet to leave the Doctors and nurses we have become so close to in the last 2 years. But it is a Great Wonderful ending to a new beginning! We can always visit when we go in for scans and swallowing studies still! We love Phoenix Childrens Hospital and the entire Oncology team!

Thank you all for your thoughts, prayers and support!

We love to wear tutu’s on Scan days! Kind of for good luck, great fashion and braveness! A tutu is like a little princesses super hero cape!

McKenna mid Echo! She did wonderful! Her tech Gary said he has never seen a 3 year old so cooperative and well mannered!

McKenna loves to help push the medicine in her tubies! One of our Favorite Nuc Med ladies Terry said “Okay McKenna here is your radioactive material” McKenna replied with “Okay Thank you!” And then they flushed her line. We are keeping her port accessed because it will be used again tomorrow.

Tomorrow she will not be able to eat or drink (because her liquids have to be thickened) after 7. She will check in at noon for her CT, PET and MIBG. Tomorrow we will be trying to do her CT with out sedation! Everyone thinks if she can do an Echo as well as she did that sitting for an abdominal CT should be a piece of cake for her! We hope to go over her scan results on Thursday.

Praying for N.E.D. (No Evidence of Disease)!

Thank you all for your thoughts, prayers and support!

Hope. Faith. Love.

We went to Benjamin James John Purcell celebration of life, because that is the nicest way to describe a funeral for a child. Cancer is so unfair! No Parent should have to bury their child. Our thoughts and prayers will continue to be with Barb and Mark Purcell.

It was as beautiful service and balloon release. Ben Loved hot wheels. He had ALL the Hot Wheels, really all of them! When we met Ben he was playing with his Hot Wheels and asked McKenna if she wanted to play. Barb and Mark had a basket of cars for Bens friends. They said “Take a car. Play with it. Laugh And think of Ben”. McKenna has not let her “Ben Car” go far from her. She has taken it everywhere! The first night she had it she said “May I want sleep with My Ben Car Please.” And she slept with it all night. She even carried it in her purse at her Fashion show today. Benjamin James John Purcell will always be in our hearts!

Today was the Children’s Cancer Network “Twist and Shout” fashion show and lunch. It was a very fun event. McKenna loved it! She played play-doh, had snacks and got a balloon crown while waiting to walk on the catwalk. McKenna was super sassy and cute. Photos Below:

Practicing her walk

McKenna will spend most of the day both Tuesday and Wednesday at the hospital getting scans and test. She needs a full work up this time including an Echo and EKG. We have faith her scans will continue to be clear! We will see she is No Evidence of Disease! N.E.D. all the way!

We end tonight with our favorite verse

Matthew 17:20
“Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there’ and it will move. Nothing will be impossible for you.”

Thank you all for your thoughts, prayers and support.

Ben was McKennas first roommate on the oncology floor, back when we had roommates. Barb is the first Cancer mom I ever met. I found strength, comfort and the belief I had what it took to fight when I met Barb! She showed me how to be a Cancer Mom. There is something about the first Cancer mom that reaches out to you and shares their strength with you!

This was a beautiful moment. I know that Cancer Dad’s share a special bond too.

This photo from Ben’s 4th Birthday Party sits on McKenna’s dresser. She always says “Thats my Ben!” Ben you are truly forever in our hearts forever and always.

We will cherish all our memories and time spent with you Benjamin James John Purcell. From the first kiss, Hospital stays, treatment parties, birthday parties, HopeKids events and play dates.

Sending Love and Prayers to Barb and Mark Purcell.
Ben’s Page:

http://www.caringbridge.org/visit/benpurcell/journal

Thank you all for your thoughts, prayers and support.

McKenna is doing wonderful! We enjoyed and celebrated 2 years since McKenna’s diagnoses, Super bowl Sunday February 7 2010. Someday Superbowl Sunday will just be Superbowl Sunday. I must admit emotionally this year was easier than last year. Maybe it will get easier each year!

McKenna had NO desire to get dressed on Superbowl Sunday. So she spent the whole day and party in pajamas at Granna’s house! Some battles are not worth fighting with a toddler. There is nothing wrong with wearing Pajamas all day some Sundays!

McKenna has started taking the Bus to school, because she really really wanted too! She told us every day “Mommy/Daddy when it Mckenna turn ride yellow bus to school? Not today… Maybe tomorrow?” So we went ahead and signed her up to take the bus! She loves waiting for it in the mornings. She tells me “I am going to go on my yellow bus to school. It okay I gonna leave you mommy!” I enjoy waiting for her in the afternoon. She is so sweet running of the bus to tell me all about her day!

McKenna also made her first Valentines for school! It was so sweet! There are only 10 kids in her class so it was very sweet to hear her talk about all of them and their Valentine ’s Day!

(Side note: Just noticed uploading these pictures that her “Christmas Monkey” pj’s seem to be her Favorite lately! Both Superbowl Sunday and then 2/11 as well!)

McKenna’s next set of scans will be March 6th and 7th. She will have her usual MIBG (Specific to Neuroblastoma) and CT. This time she will also have an Echo and EKG just to take a look at her heart. She is monitored closely for side effects from such high dose chemo and investigational treatments. It is routine. We did recheck her urine this last week because her urine levels (VMA/HVA) had been elevated last month. We wanted to check them again before scans, just to see what they are doing. Dr. Eshun is not worried about it, so we are not going to worry about it unless we are told otherwise!

McKenna is so psychologically conditioned when she sees Phoenix Children’s Hospital she gets So excited and has her “Routine” that must be followed! Even just going in to give a little pee can take 20+ min with this little lady. First you have to walk up to (the old) main entrance and say “Good morning! May I want stamp please?” and get two stamps, one on each hand, from the front desk ladies. She always says “Thank you!” Then you must go back outside to the outpatient clinic (where we would usually see “Her” Dr. Eshun, just not today) and go pee pee in the cup. Which she does amazingly well for a 3 year old! She cracks me up because EVERY TIME she announces “I pee pee in cup! Not on mommy’s hand!” After she potties she has to be the one to walk her pee pee to the lab. Where she tells the lab ladies “Good Morning! May I want Sticker please?” gets stickers. Says “Thank you! Have a good day! See you later!” Lastly, before returning to the parking garage you have to go back again to (the old) main entrance and see the front desk ladies for another set of stamps, again one for each hand, but this time you say “Thank you! Have a good day! I see you later!”

Considering she could have some form of PTSD or traumatizing memory of the hospital I much prefer the routine of stamps, stickers and smiles! During all of her treatment I only remember one day, just one, that she did not want to go to the doctor, she did not want stamps or stickers. Only one day in her 2 years of going to Phoenix Chlidrens has she ever said “Please not today. We go tomorrow.”

It is truly a beautiful journey when you think of it all that way.

Every year the Children’s Miracle Network and Phoenix Children’s Hospital do a “Fashion Show” Luncheon and silent auction. Last year McKenna was inpatient receiving treatment so McKenna was only able to participate in the Inpatient little fashion show they did on the Oncology floor for fun. She really did have a great time walking the little cat walk. This year we are happy and excited for McKenna to participate in the actual “Twist and Shout” Fashion Show at the Biltmore on March 4th. We are blessed and excited to help Children’s Miracle Network and Phoenix Children’s Hospital in any way we can. Their amazing medical team has been so supportive from stamps and stickers to life saving treatment. Words could never express how much both wonderful companies mean to us. Thank you for giving McKenna a Second Chance.

(Last Year on the Oncology Floor)

Wow did not realize how long this update became! Sorry will try not to go so long between updates again! Hope you enjoy the photos and great news!

Thank you all for your thoughts, prayers and support.

The anniversary of her diagnoses is strange time, for me as a parent. So many emotions and thoughts surround this time. February 7, 2010 was Super bowl Sunday I wonder if I will always relate the Super bowl to that day…

McKenna is doing great! She is enjoying every bit of preschool. She tells me every morning “I am going to leave you. I have to go to school. When I all done you need wait for me I see you.” And of course after class she is nonstop telling me all about her day! It is such a beautiful time, definitely the highlight of my day! She will talk all about Circle time, outside time, story time, and snack time all the time.

I have done well at not thinking about her urine markers or how we will need to recheck them soon. I have been making sure she eats and poops. Constipation was her only symptom. So I have been and most likely will continue to be almost obsessed with whether or not she poops each and every day for maybe her whole life!

Thank you all for your thoughts, prayers and support.

McKenna’s swallowing test did not go so well. We did not see any improvement in her swallowing. This test actually showed her having more difficulty than her last test 6 months ago. The results suggested Honey thick, which is where McKenna was just after her Trach was removed almost 2 years ago, would be best for her.  After further discussion and consideration, since McKenna has not been symptomatic McKenna’s Oncologist has decided we continue with the nectar thick consistency.

Last night we also received a call that the markers in McKenna’s Urine are slightly elevated. He would like to recheck her urine in 3 weeks instead of 2 months like we were expecting per protocol.  He made it clear that he is not worried about it, so we shouldn’t be either. As we all know that is far easier said than done.

We just continue to have faith and admire how far McKenna has come in the almost 2 years since she was diagnosed. McKenna is in preschool and doing amazing! The Lord is Good and has blessed us very much.

I will end with one of my favorite scriptures; you all have read it many times!

Matthew 17:20
“Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there’ and it will move. Nothing will be impossible for you.”

Last week- “ummmm today I make a snow man! Yup I do that! I line up n I go swing up up swing! Annnnnnn I go down the slide! Annn I line up! Annnn I play bingo! Ummmmmm annnnn I hammer the block! Ummmmmm i eat snack! Annnn then I put my hand on my head i get snowman stamp!”

Today- “the apple fall down the tree annnn the alli-later (alligator) eat the apple like OMMM. Annn I eat applesauce snack with spoon. Annn I pick up apples like this *hand motion* Annn I put my hands on my head get stamp”   Her stamp today was the letter “a”

This Thursday McKenna has her Barium Swallowing test. She gets this test every 6 months to see how her swallowing has improved. Because she had a Tracheotomy in March of 2010 she has not been able to swallow regular liquids. All her liquids have been thickened first to a Honey Thick consistency then to a Nectar thick consistency and currently she is at a ¾ Nectar thick consistency. We are hoping that she will fully pass this time and not have to have packs of gel in every drink of hers! Unfortunately, McKenna did realize her drinks are different than the other kids drinks during Christmas this last year. When McKenna wanted a Capri sun (in the juice pouch) “With a straw like that one” and she couldn’t have it that way. However, if she doesn’t pass it all the way the pack of gel is not difficult. We are happy to have her and have her drinking and eating.

We choose to look at McKenna’s long term side effects from treatment (Hearing aids and thickening gel) as daily blessings. These little things are just another reason to smile, admire McKenna’s strength and thank the Lord for another day.

Thank you all for your thoughts, prayers and support.