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Alexis Nicole

Alexis Christmas 2009
Please scroll down to the bottom for the newest Journal Update. Thank You!



Alexis will turn 10 years old on April 11, 2010!
Alexis was diagnosed with T-Cell ALL
(Acute Lymphoblastic Leukemia)
on July 3rd, 2004 at Riley Hospital in Indy. Her treatments started out on a weekly basis and she started maintenance in March 2005. She completed all of her Chemotherapy treatments on October 21, 2006 and is now on bi-monthly doctor visits. On October 24, 2006 Alexis had a Bone Marrow check and it came back clear...she is Cancer Free! She will continue to have bi-monthly doctor visits for the this second year post treatment, then periodically for the next 5 years.
We have created a foundation in Alexis' honor to help offset the costs of treatment and travel necessary to obtain treatment for Alexis and other children battling cancer from Northwest Ohio. We have closed the account but wanted to say THANK YOU to everyone that donated either their time for fundraisers or the monitary donations that helped us and other families with medical / travel expenses. We have been blessed with the opportunity to be able to offer a some financial help to several other families with your support. Thank you!

Alexis' Story
written by mom Erica


My husband and I were married for 5 years before we got pregnant. We went through fertility treatments on and off for 3 of those years until August of 1999, when we found out that I was pregnant. On April 11th, 2000 Alexis entered our world and was everything that we had prayed for. She was a beautiful, healthy baby girl weighing 9lb 1oz and was 21½ inches long, she was perfect!

Alexis had ear infections from the time she was about 6 months old. She had tubes placed in her ears in May of 2001, then about 1½ years later she had her adenoids taken out and her 2nd set of tubes placed.

In June of 2004 she had what we thought was the flu but it would come and go for about 2 weeks. Thursday July 1st we were getting packed to go away for the 4th of July weekend when our world turned upside down. It was about 11pm, I had just rocked her to sleep and carried her upstairs when she woke up and started to cry, then she started to panic and she couldn’t breath – her face started to turn blue and the fear in her eyes… I will never forget it! Austin, her brother, was here and he got the phone and called 911 for me. Tony was just getting home when the EMT’s got here and we decided to take her to Cameron ER in Angola to have her checked out further. As soon as they listened to her, they said that she had a collapsed lung and that they needed to do a chest x-ray, her blood oxygen level was at 88. The x-ray showed a large dark spot in her chest, it could be an enlarged heart, tumor or several other things – I don’t quite remember because just hearing that there was something really wrong was a shock to us. They started making arrangements right away to send us to Lutheran Hospital in Ft. Wayne but while we were waiting, they needed to do a CT scan, that showed that it was not connected to the heart and it was more than likely a tumor. By this time it was 6am and we had both been up for 24 hrs just running on adrenaline. We were only there for about 2 hours, long enough for them to know that she needed more specialized care than what they could provide and they were arranging an ICU ambulance to transport her to Riley Hospital for Children in Indianapolis.

When we got to Riley they were waiting for us, we met so many people within the 1st hour it was overwhelming. By 7pm Friday they had her in surgery to test her lymph nodes and to do a spinal tap and bone marrow check. Finally we got up to her room around 1am on Saturday. By Saturday July 3rd we had most of her test results, she had 4 cancer cells in her spinal fluid and 34% in her bone marrow. They started steroids and some of the treatments right away on Saturday. Her diagnosis was T-Cell Acute Lymphoblastic Leukemia (ALL). She is considered high risk because it is T-cell and not B-cell – she was put on protocol 1961-C, it is one of the tougher arms because she was high risk. Her initial hospital stay was for 7 days and on day 4 they took another chest x-ray and they had completely shrunk the tumor…it was gone!

On July 16th, our 10-year wedding anniversary, Alexis underwent surgery in Indy to place her port in her chest. The port is under the skin and connected to a main artery, so when they need to draw blood or give her an IV they use this spot so she doesn’t get “pokes” all of the time. Most of her chemo was given through her port site. We then transferred to Mercy Children’s – 2 hours closer to home. She made it through the 1st phase all right besides the swelling from the steroids and the stiffness in her legs from the Vincristine. Consolidation was very bad for her she ended up in the hospital with a fever of 104° and that was on Tylenol every 4 hours for 10 days. They finally found that she had PCP Pneumonia as they have only seen 2 other cases of this in 15 years. She also developed Colitis from all of the antibiotics that she was on killing the good and bad bacteria. Finally after 15 days we got to come home for 4 days – she got another fever and we were in for another week. We were in and out of the hospital for about 5 weeks. When I say we, we never left her alone – we slept there, ate there and showered there – we are in this together.

It is truly amazing how she has been able to keep her sense of humor through most of this thus far. We had another 10 day stay in the hospital in January 2005, when she caught the flu, from me, I said we were in this together right?! This was right after she started what they said should be the last tough phase – delayed intensification. She was hospitalized in February for a few days as well. We have probably stayed in the hospital for at least 60 days since she was diagnosed. She finally started maintenance on March 14th 2005, this is the same treatment on an 84-day rotation until the completion date of October 21st, 2006. She was on steroids (prednisone 15mg 2x day) for the first 5 days of every month and every Monday she took oral Methotrexate. She had been more sick to her stomach since she started maintenance than through most of her treatment, this lasted for about 7 months. As for the steroids…well, if any of you have a child on steroids my heart goes out to you. She had to be on them 5 days of every month until October 21st, 2006 and they lasted in her system from the 2nd day until about day 16. She got very emotional and would cry about little things, enough where you try to catch her early so you can get her calmed down so it doesn’t last for 15 minutes or she is incredibly ornery.

We were having difficulty getting her to gain weight, her beginning weight was 39lbs, she got up to 47lb. in the beginning from the steroids but dropped down to 37.5 lbs. we had to give her Megace, to increase appetite.

She was diagnosed with osteopenia (thin bones) caused by the steroids. In January 2006 she fractured her right foot, about 2 months later she fractured her right ankle. She had a limp and couldn't walk a lot until about 2 months after the end of her treatment, October 21, 2006. This too we shall overcome; she is a real trooper and is our little shining star. She steals the heart of everyone that she comes into contact with. Now we find it hard to slow her down! She is constantly running, jumping, dancing...driving me crazy - but I thank God every day that she is here and feeling great!

Alexis finally completed her chemotherapy treatment on October 21, 2006! She is now officially cancer free! Her energy level has just sky rocketed and she feels great!

She will continue to have monthly doctor visits to make sure her blood counts are staying pretty normal and will be monitored for 5 years. Her port was removed the end of April 2007. Then in September 2007 we found that she had obstructive sleep apnea so after a sleep study and some very long sleepless nights she got her tonsils removed...but of course she was one of the few that had to have emergency surgery the next week in the middle of the night because of bleeding - all is well now. Although she still has to sleep on an incline because she says it is hard for her to breathe unless she has it and when she gets upset she complains that she can't breathe. They did do a follow up chest x-ray and everything looked fine. So we are keeping an eye on that along with a few lymph nodes that are along her neck that have been there for a few months...just monitoring they right now to make sure that they are not growing.

She finally was "released" by me to attend public school for the 2008/2009 school year and she LOVES it. She has made friends already and loves her teacher.

We just take things day by day and thank God for each and every day we have. God has a plan and no one knows when or why but just know he is with each and everyone of us especially in our time of need. We thank God for all of the support from our family and friends as it has been so overwhelming. Our experience at both Riley and at Mercy Children’s has been wonderful – the doctors, nurses and support staff are truly amazing.

Thanks to everyone that follows Alexis’ progress and for all of the thoughts and prayers – that in itself gives us so much strength on the really rough days. Also, thanks to those of you that send cards, stickers and all of the other fun stuff – it really does Make A Child Smile!!



LIFE'S TUG OF WAR
Life can seem ungrateful and not always kind...
Life can pull at your heartstrings and play with your mind....
Life can be blissful and happy and free...
Life can put beauty in the things that you see ...

Life can place challenges right at your feet...
Life can make good of the hardships we meet...
Life can overwhelm you and make your head spin...
Life can reward those determined to win...

Life can be hurtful and not always fair...
Life can surround you with people who care ...
Life clearly does offer its Up and its Downs...
Life's days can bring you both smiles and frowns...

Life teaches us to take the good with the bad...
Life is a mixture of happy and sad...

SO

Take the Life that you have and give it your best...
Think positive, be happy, let God do the rest...
Take the challenges that life has laid at your feet...
Take pride and be thankful for each one you meet...

To yourself give forgiveness if you stumble and fall...
Take each day that is dealt you and give it your all...
Take the love that you're given and return it with care...
Have faith that when needed it will always be there...

Take time to find the beauty in the things that you see...
Take life's simple pleasures let them set your heart free....
The idea here is simply to even the score
As you are met and faced with Life's Tug of War


Alexis will be 9 on her next birthday!
Lilypie Baby PicLilypie Baby Ticker

Alexis' Involvement
Alexis sang with The Menus band from Cincinnati, OH, they played at Liquid Ultra Lounge in Toledo for the ReMax Cinco de Mayo party on May 1st to benefit Children's Miracle Network and the Susan G. Komen Foundation.
Alexis sang a song with them!

Alexis was featured on the Make A Child Smile website for June 2005. There is a link at the bottom of the page to take you to her site. This has her story from the very beginning. Please take a few moments to check out this site. Also, they now have photo albums and we have taken advantage of that and have posted several pictures. Hopefully I can get some from the past year loaded soon!! Keep watching!) Alexis was chosen as the Ambassador for Mercy Children's Hospital for the annual tree lighting to kick off the 20th Anniversary for the "Brighten a Child's Life" campaign for Children's Miracle Network and Fifth Third Bank Northwest Ohio in Nov. 2006. Fifth Third bank raises money every year for area pediatric hospitals. She has practiced her line that she had to say at the end "Give a Gift Too Big To Wrap", she was very excited!

We went to Dance Marathon at BGSU and had an awesome time! Everyone there was just wonderful with the kids. I don't think I have seen Alexis smile so much in my life! Thank you!! Please be sure to check the Make A Child Smile Photo album for additional photos. If you have photos that you would like to send to us please e-mail to teflynn@williams-net.com
Dance Marathon will be at BGSU on March 21st & 22nd, 2009
1st Annual Defiance College Dance Marathon will be April 4th & 5th, 2009

Normal range for blood count numbers

WBC (white blood count) 5.5-15.5
Hemoglobin 11.5-13.5(transfuse around 8)
Platelets 140-450
ANC above 1000



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Journal

Saturday, March 31, 2012 5:55 AM CDT

Wow...over 2 years since I have updated this page. With FB it is so easy to share information with everyone....AND she has been doing so well that I don't really think about it. I aplolgize to those that have been following her journey for not updating.
To start off Alexis is doing really well....she is 5 1/2 years post treatment already!! She started her LONG journey July 2004 and completed her chemotherapy Oct. 2006. Seems so long ago...but of course she has had some other issues that we have had to tend to....but all in all a happy...healthy...almost 12 year old! I can hardly believe it!
She still has to do 2 nebulizer breathing treatments a day to help keep her lungs strong and healthy. When she catches a cold it usually goes straight to her lungs...so we have to add in albuterol nebulizer treatments every 3-4 hours to her day. Last fall we finally had a CT and MRI done of her brain because of terrible migraine type headaches....we were sent to Ann Arbor for the results...that was a VERY low time for us, but the results were great! She had a spot on her brain, but they concluded it was a cyst that had bled. The doctor also diagnosed her with migraines....follows in her mamas steps :( To us this was GREAT news....we can handle taking a med 1 x a day for migraines...better than what the other outcome COULD have been...a brain tumor. So besides her missing...as of today...approx 29 days of school this year she is GREAT!
She (we) are so excited for this weekend! This is our annual weekend in BG for their HUGE....AMAZING Dance Marathon! We have been a part of this since 2005...the students there are awesome! Lex wants to be an "all hour" dancer...not going to happen sorry! She gets sick so easily when she gets exhausted AND there is NO way I could do it. They dance for 32 hours raising money for Childrens Miracle Network...which goes to St. Vincent Mercy Childrens Hospital.
I will post more later...thinking of upgrading to the new site...so watch for a new link. We want to keep this page going in hopes that the journal entries throughout her journey help others that may be going through the same or similar journey.
Thanks again....Love The Flynn Family!!

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Hospital Information:

Patient Room: We Are HOME!!

St. Vincent Mercy Children's Hospital
Cherry St.
Toledo, OH

Links:

http://www.makeachildsmile.org/2005/prev_2005_jun1.shtml   Make A Child Smile - Alexis
http://www.makeachildsmile.org/gallery2/v/macs_kids/alexis_f   Alexis' photo albums
  


 
 

E-mail Author: teflynn@williams-net.com

 
 

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