Still Recovering

Keep praying for NEGATIVE MRD!

MRD testing will most likely be perfomed this Friday or next Monday.  John's body is still recovering from the intense rounds of chemotherapy he just completed.  His body is trying to produce blood on its own but, it still needs the support of blood products, platelets and blood transfusions.  Until John's body can recover on its own Dr. Pui can't test his bone marrow.  White blood cell count needs to be 1000 (his is 200), plateletes need to be 50,000 (his are 80,000 but some are from the platelete transfusion he had for brunch on Sunday) and his ANC needs to be 300 (his is ZERO).  So we wait, anxiously wait! 

John's nurse, Miss Martha May, said we would start to glimpes of the John we know and love soon, he'd blossom like a flower.  He's in there, fighting to come out!!!!  We've seen more smiles and even an occasional giggle!   

We love John so much and want so badly for him to be cured of his cancer.  Please continue to pray for John's healing and cure.  Please pray for NEGATIVE MRD!  

Love,

Kathy

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

Hurry up and wait

Hurry up and wait.  In theory it’s the concept of making every effort to arrive ahead of time, with the expectation of having to wait.  It builds time into one's schedule, therefore accounting for unexpected occurrences.

We start almost everyday out by rushing out the door trying to arrive at the hospital ahead of time so we can get a jumpstart on his appointments but we always pack our day bag expecting the unexpected.  A typical day starts with blood work, then we proceed to the A Clinic (Leukemia Clinic) to meet with Dr. Pui to go over the day’s labs then we usually proceed to the Medicine Room for outpatient Chemo :(.  It’s a long day even when things run smoothly.  We have had the expected, yet unexpected (new & scary) occurrences.  These occurrences are from the side effects of chemotherapy.  The side effects are many (just to name a few); low blood counts, nausea & pain.  Many of you have asked, “Is he in pain”?  For John, the answer is, YES.  Sadly yes.  Treatment causes John pain.  All of his chemotherapy side effects are treated with a slew medications, but morphine and codeine are his favorites.  Oh how I wish they let the parents in on those! He also has pain in the form of heartache.  He yearns for his previous life; school, soccer and friends.  So, we hurry through our day, shuffling from one appointment to the next, weaving through the unexpected occurrences and wait.

What are we waiting for?  We are waiting to see if all this torture is going to get John to remission.  We spend every minute of every day praying that John will reach remission.  Remission is expected at the very latest on day 42 (we are on day 30).  Waiting is terrifying!  But, we wait and we watch the minutes crawl by as John suffers the side effects of treatments trying desperately to ensure him that he will beat this disease and it will all be worth it!  We wait to see how John’s bone marrow will respond to the intense rounds of chemotherapy.  We wait for the testing to be performed around day 42!  We wait and pray for remission .

Please continue to pray for John’s healing!

Love you all.

Kathy

Thank You

April 21, 2012 - Day 26

By definition it's a word used to tell someone that you are grateful for something they have said or done. Grateful doesn't begin to describe how Rich & I feel, but for lack of a better word Rich & I want to THANK YOU, from the bottom of our hearts,  we thank you!

I am a bit behind on my thank you notes.  I someday plan to personally thank each and every one of you! Until then I hope this post will convey how truly appreciative Rich, John, Isabella & I are for your kindness!

Thank you for the prayers.  I absolutely believe in the power of prayer!  I am in awe at the amount of prayers that are said on John’s behalf from individuals, entire congregations, Carmelite Sisters, prayer groups and prayer lists around the country!  The crosses, prayer cards, icons and holy oils are also incredibly special!  Thank you for praying for John’s healing!

Thank you for the friendship. A wonderful friend sent me the following … John 10:11 Good Shepherds are willing to lay down their lives for their sheep.  We offer consolation and comfort, especially in moments of crisis, when we say: "Do not be afraid, I know what you are living and I am living it with you.  You are not alone."  I look at the email often and I thank God for our amazing friends.  Thank you for offering us comfort and being here for us every hour of every day!  We know we are not alone and we thank you!

Thank you to all of the people who made it possible for John to be treated at St Jude.  So many of you worked together to make arrangements for John to receive immediate treatment at St. Jude.  We are blessed to be here!

Thank you Dr. Pui, Miss Martha May and the many other doctors, nurses and researchers who treat John and make miracles happen at St. Jude.

Thank you to all the people who helped transport John to St. Jude. Tuesday, March 27^th, was a frenzy of events but thanks to the compassion and generosity of many we safely arrived at St. Jude.   Thank you for the plane, the fuel, the pilots who safely delivered our precious cargo to Memphis and the car service that drove us to the doorsteps of St. Jude.  It is a day that I will never forget!

Thank you Ronald McDonald House for providing us a home away from home.

Thank you for helping take care of Isabella; caring for her at our home in Charlotte, driving her to and from school, taking her out to dinner, taking her out for fun and laughs, providing her friendship and giving her the hugs that we wish we were there to give her!

Thank you for the abundance of food :). I am so grateful for all of the yummy treats you all have delivered to the house in Charlotte.  I’ve been told that there have been some delicious home cooked meals and tasty desserts dropped off!  The pantry was even stocked!  We’ve had some beautiful treats sent to us in Memphis as well; snack baskets, fruit baskets, cupcakes, gift cards to local restaurants and Starbucks gift cards! 

Thank you for taking care of our home.  So many of you have banded together to mow our lawn, get our mail, take in and out our garbage, clean our home and do laundry!

Thank you for bringing our car to Memphis! 

Thank you for the amazing care packages you have sent John!  They always bring a smile to his beautiful face :). They are filled with love!  He has enjoyed the Legos, games, awesome soccer gear, sports equipment, yummy candy, Wii games, DVDs, iTunes gift cards, books & special hats!  

Thank you for the mohawks and shaved heads!  John enjoyed his mohawk and I hope you all enjoy yours too.  He loves the support!  John has lost about 50% of his hair this week so we shaved it down so he wasn’t so “patchy”.  Rich joined him and they both look cute!  I’m losing hair by the handfuls so I think I’ll be joining them soon (not so cute).   

Thank you to our CPS family.  We are proud to be part of such a special community of caring people!  You all have made John feel incredibly special.  The care packages, cards, emails, posts, voice messages, videos and shaved heads lift his spirit!  You’ve helped him stay connected and have reassured him that he has not been forgotten! He WILL walk the halls of CPS again!

Thank you to our CSA family.  John dreams of the day he will be back on the soccer field.  He will be back in that goal box someday and he’ll be better than ever!  Thank you Coach Erik and Copa Select for supporting John!  He was amazed when he saw the pictures of his teammate’s uniforms with the #19 orange patches!  WOW!  The buzz cuts are super cool too!  Thank you coaches and staff for sending inspiring messages to John! Thank you to all the kids at CSA!  We have gotten so many cards, posts and care packages from soccer buddies. You kids are awesome and your parents should be proud!  I can’t wait to give you all a big hug :).

Thank you to our TradeKing family.  Thank you for creating the website, johnjhagen.com, that has been a key communication tool for friends and family!  The outpouring of support from all of you is astonishing!  Thank you for the prayers, posts, emails, texts, care packages and the mohawks :).  Most importantly, thank you for making it possible for Rich to be here with John in Memphis!    

Thank you for the posts.  John loves to read the posts!  It brings a smile to his face to know that family and friends are thinking about him.  Thank you for the words of encouragement, the jokes and the friendship!  

Thank you for the Tweets.  Twitter has been a fun way for John to post quick little messages.  Following the RTs and friend's Tweets are fun!  He even got a T-Shirt from someone at Twitter who is following his journey at St. Jude.  Very cool!

Thank you for the cards.  He has had some great giggles from some of the cards he’s received in the mail.  Thank you for putting a smile on his face :)!

Thank you for the emails.  I check my email first thing every morning and so many of you send such beautiful words of encouragement.  It’s a great start to the day.

Thank you for the texts.  We love the inspiration, words of encouragement, pictures and videos sent via text! 

Thank you for voice messages.  We aren’t always able to pick up the phone or call back but hearing the sound of familiar voices has been wonderful for all of us.

Thank you for the kindness of strangers!  I have received hugs (lots of hugs), cards from children, a beautiful hand knit cap and care packages from people that we have never met.  It’s Amazing!  

Thank you for the sacrifices.  Many of you have had to leave your families to help care for Isabella and/or come to Memphis.  I know it’s hard on your families and I appreciate the sacrifices you all have made to help us.

Thank you for everything that I have forgotten to mention! 

Rich & I love each and every one of you!  We will forever be grateful for all that you have done for us. 

Thank you!

Kathy

"But it all turns out all right you see"

"But it all turns out all right you see. And I go back to being...me." - Dr. Seuss

 

This quote is on the wall in the kitchen area here at Casa Ronald McDonald. (See picture above). Every time I pass it, I feel peace & hope.  It strengthens my belief that John will win this battle and live the life he deserves.

I have now accepted the fact that the path to curing John’s cancer is not one that simply goes from A to B.  He has a long challenging road ahead of him.  A road that will have many twists and turns but will ultimately lead to John beating Leukemia!

Tomorrow will be day 22 of John’s Induction phase, the day when Dr. Pui will get more aggressive with John’s chemotherapy treatments.  John has been pumped with so many drugs over the last three weeks it’s hard to imagine a more aggressive path. He will be inpatient for at least a coupe days. His stay in the hospital is critical because they push the chemo in, via his IV, then they flush it out with IV fluids to protect his bladder and kidneys.  They repeat this process every 12 hours for 2 days, four treatments over 48 hours. Ugh!

John’s body is starting to show the signs of chemotherapy.  He started to lose his hair today. I think he still looks very handsome but he is emotional about the changes he sees in the mirror.  He is also showing the side effects of chemotherapy internally, John’s ANC level is 100.  ANC stands for Absolute Neutrophil Count and it represents how well your body can fight off infections, especially bacteria infections.  To put John’s 100 ANC in perspective, a normal ANC is above 1,500.  Having a low ANC right now for John is a good thing. They don’t want his body fighting the chemo.  That also means John could get sick easily, so we need to be extra careful and take antibiotics & antifungal prophylactically.  Germs are bad!

Kathy, John, Isabella and I continue to be humbled by the outpouring of love, prayers and support. It’s amazing and uplifting. Please continue to send John messages, emails, tweets, viddy’s, instagrams, and smoke signals of prayers.

It all WILL turn out right you see......

Unstoppable Determination!

 Rich