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His Smile

May 3, 2012 - Day 38 of Induction

 

His Smile

I pray for healing.  I pray for better tomorrows.  I pray to see John smile again. 

John has the most beautiful smile.  It’s a contagious smile.  You can’t help but smile back at him when he looks at you and grins.   What I used to take for granted seeing on a daily basis, I now yearn for.  It’s been weeks since Rich & I had seen him smile, but this morning we finally got a smile :)!  It was just a brief smile before he drifted back of to sleep but it was a smile!  Unintentionally, it’s his way of letting me know that he’s in there and he’s starting to feel better.  I’m not a doctor, but it’s a great sign to see a smile. 

We are officially in the “waiting” stage.  We can’t test his bone marrow until there is something to test.  His white blood cells are virtually nonexistent.  His body needs to recover before we can proceed.  Dr. Pui is estimating middle of next week, but John’s body will let us know when it’s ready. 

John had his last chemotherapy treatment of the “Induction Phase” this past Monday! (the phase itself doesn’t actually come to close until he his bone marrow is tested)  It marked the end of 14 straight days of chemotherapy treatments!  Some days he had up to 5 different chemotherapy medications administered.   It was a brutal.   It was cruel to his body.  The doctor tried to prepare us for what John would look like and act like after the intensive therapy but no one can ever put that into words.  His pallor is ghostly, but that’s an improvement.  He usually looked green/gray … think McDonalds Shamrock milkshake meets grey clouds.  He is about 90% bald.  It was very upsetting for John to see his hair matted on his pillowcase day after day so he sat in the bathtub and actually pulled it out.  It broke our hearts when he told us what he did.  It is scary for him to see the changes in his body and nothing Rich and I can say or do can take that pain from him.  While it’s incredibly sad to see John bald he looks just like he did when he was a baby; pudgy round face with a beautiful soft, bald head.  John hasn’t been able to walk more than a few feet on his own for quite a while.  He still relies on a wheel chair to get around.  He also sleeps most of the day.  I think it’s a blessing.  His body needs to rest to heal and it’s peaceful to watch him sleep.  Internally his body is struggling.  Yesterday his platelets were critically low.  What started out as a routine morning visit with Dr. Pui quickly turned into a whirlwind of events; platelet transfusion, ultrasound and Morphine for pain and to top it off Benadryl for a rash around his PICC line (peripherally inserted central catheter / central line inserted through the arm).  I am so grateful that everyone moved at lightening speed to get done what needed to get done.  Blessed to be surrounded by such amazing doctors and nurses.  It’s physically and mentally taxing on John but as Dr. Pui said to Rich & me yesterday, “it means I gave him enough chemotherapy”. 

John continues to show incredible strength and courage everyday!  He is fighting with everything he has!  His body is going to get stronger and heal.   John is going to smile again! 

In order for Rich & I to wake up and put one foot in front of the next we have Faith and continue to believe that God will hear and answer our prayers.  Please pray that John is healed of his Leukemia.  Please pray that his MRD (Minimum Residual Disease) test next week gives us the results we are breathlessly waiting to hear, MRD NEGATIVE!  Please pray that He will grace us with His smile!

Thank you for your prayers, love and support.

 

Kathy

 

 

 

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Reader Comments (11)

I am praying Kathy. I am holding him up to God. I wish I could hug you. Sit down and have lunch with you. Healing prayers, prayers of peace, prayers that you feel our love. Love, Cynthia

May 3, 2012 | Unregistered CommenterMrs. DuBose

We love you! We think of you all everyday and will be praying for the results to come back negative! Love, Deme, Madeline and Maxwell

May 3, 2012 | Unregistered CommenterDeme Matsis

Every day I think of John's and I always think of his smile. It used to fill the goalie net and it will fill it again. I pray that the results next week will be what you are hoping for. We all cannot wait to see him again. Stay strong!

Cheryl

May 3, 2012 | Unregistered CommenterCheryl Butera

Dear Kathy and Rich,
Just enrolled John in the St. Therese of Little Flower Masses for Healing. The Carmelite nuns will begin saying prayers for him each and everyday all over the world and will continue for the next 5 years. I will continue to pray for for not only John, but you both and all your family as well.
With loving prayers and faith that he will begin his road to recovery soon,
Beth Otis

May 3, 2012 | Unregistered CommenterMrs. Otis

Hi Kathy

What an incredible update. Thank you for sharing this with us all. As I told Rich earlier, people you guys know and don't know are pulling for and parying for Johns steady recovery

God bless you all

May 3, 2012 | Unregistered CommenterQuoteman

John does have an beautiful smile it lights up his whole face and is very infectious. I can't wait to see it again when he beats this thing, which he will do. The strength and determination you all show is incredible. The updates are incredible and the unstoppable determination shown by John is just amazing. We talk about you every day and you are never far from our thoughts. We miss you all and can't wit to see you all back in Charlotte. THe Cahills

May 3, 2012 | Unregistered CommenterJanet Newton

We are holding firm to the knowledge that God hears our prayers. That God is smiling back at John! That John is being held every second of every day by his almighty hand! His friends here in Charlotte and everywhere miss his contagious smile and will rejoice when he gets home!! His strength and determination to keep up the fight is remarkable and I know you are so amazed and proud of him. We pray John finds peace this week of no treatments and that the test comes back negative.

Blessings!
The Hamelinks

May 3, 2012 | Unregistered Commentersuzy

You are all in our thoughts and prayers. We will continue to pray for John's tests to come back negativeand that his beautiful smile will fill your hearts with joy once again.
Shawn and Denise Dulligan

May 3, 2012 | Unregistered CommenterDenise Dulligan

We are hoping and praying for MRD Negative and thinking of all of you every day. You inspire me with your strength and determination!

Courtney

May 4, 2012 | Unregistered CommenterCourtney Mueller

A miracle for sure.....he has a beautiful smile and a contagious laugh. I love him so and so does Papou. I send my prayers and lots of love my dear Kathy. You and Rich are incredible.

May 5, 2012 | Unregistered Commenterfrances matsis

Thanks so much for the update. We are all pulling for John and that he can progress to the next step to beat this.

May 7, 2012 | Unregistered CommenterNicole Wachs

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