T is for ...
John J. Hagen
The walls at St. Jude are covered with murals and children’s artwork. One of the walls is called the ABC wall. It is covered with letter boards ranging from A-Z. Kids have written a word for each letter and what that word means. So hear is my letter board.
T is for … Tears
Tears of JOY!
Wednesday (August 29th) we received great news. John is MRD NEGATIVE! He remains CANCER FREE! We waited 56 long hours for Dr. Pui to deliver the results and it was worth the wait. In addition, his brain MRI is “normal” and his spinal fluid is “clear”! GREAT, GREAT & GREAT news!
Tears from pain.
Typhlitis: John is suffering physically. He was admitted to St. Jude this past Wednesday with a very inflamed “belly”. Also known as Typhlitis, inflammation of the intestines. Oh my, it caused serious discomfort! He was wreathing in pain. So many tears ran down his beautiful round face! After two days of a stick diet of NOTHING, around the clock antibiotics & morphine, his belly is on the mend.
Nerve Pain: One of his chemotherapy treatments he receives gives him nerve pain. While he takes medication in advance of the treatment and throughout the following week … it still packs a punch every time! So, this morning’s breakfast consisted of Morphine and an Eggo waffle. Breakfast of a champion!
Tears from isolation.
John is also fighting a bacterial infection. So, he is officially in “isolation” until cleared by Dr. Pui. What does that mean … we enter the hospital through a separate area & we wear the white marshmallow suits when we have appointments at St. Jude. (it protects John and the other immune compromised kids at St. Jude). John already feels “different” and self-conscious; this added label has caused lots of tears! We moved out of the RMDH and into an isolation room over at the Grizzlies House. John in confined to the room other than clinic and treatment appointments. (Once his counts are high enough he will be able to leave the St. Jude campus, he just can’t be around immune comprised people).
Tears from exhaustion.
John is physically exhausted. It’s been a very long, hard week! It began this past Monday (Day #1 of ReInduction) and consisted of 15 hours of scheduled appointments: blood work, A Clinic Visits, MRI scan, Lumbar Puncture with central nervous system chemotherapy & IV chemotherapy treatments that took us late into the night. Exhausting! Totally exhausting! (Thank goodness for the St. Jude Starbucks :)).
John is emotionally exhausted. Between the treatments, the inpatient stay and the isolation, John is totally wiped out! It has been heartbreaking to hear him cry out “why me”, “I can’t do this anymore”! Sadly, I ask the same thing over and over again, “Why him”! It’s so unfair! So cruel!
Tears of gratitude.
I am eternally grateful for the level of care John receives here at St. Jude! Dr. Pui & Ms. Martha May ALWAYS do the very best to alleviate John’s pain (physical & mental). Dr. Pui even came up to the inpatient floor several times a day to visit John & perform some fun magic tricks. He is amazing with John and I am grateful that he takes time out of his busy day to put a smile on John’s face. I could go on and on and on about how grateful I am to have Dr. Pui as John’s doctor. We are grateful that Dr. Pui has Unstoppable Determination to cure Leukemia. John calls it PUI POWER!
A big thank you to everyone back at home! Thank you Noni & Papou for taking care of Bella! Thank you for feeding my parents and Bella … the meals are wonderful! Thank you for driving Bella to and from school and watching over her while I’m away. Rich & I appreciate the posts, emails, tweets and texts from friends and family who carry us through these difficult days. We are so grateful and amazed that you all continue to walk with us on this journey. Thank you!
We are wiping away the tears of this past week and pushing forward! Together with your love, support & prayers and John’s renewed UNSTOPPABLE DETERMINATION we will continue to fight!
Please continue to pray for John’s forever cure and for better tomorrows!
Love,
Kathy
September is National Childhood Cancer Awareness Month. Make a difference in a child’s life. Give blood this month in honor of John Hagen! Blood products breathe life into children enduring chemotherapy treatment!
Reader Comments (3)
You always have a way with words!!!. We do pray for John's fover cure, and his unstoppable courage. Miss you guy's, hang in there for better tomorrows.
The Heslink's
Sending love, hugs, and best wishes for more tears of joy.
John,
As I read your Mom's update it broke my heart that you're in pain and asking "why me?" I would feel the same way if I was in your shoes. All I can say is that I have to believe that God never gives us more than we can bear. And if that is the case, you possess strength beyond measure. God, your family and friends are going to help get you through this. The journey has been long and hard but your UNSTOPPABLE DETERMINATION is not only going to get you through the treatment - but keep you cancer free for the rest of your life. Never, ever give up - no matter what. Your break through is right around the corner. You are almost to the finish line, and when you get there - the victory is going to be so sweet!
Continually lifting you and your family up in prayer,
Kimberly & Elijah
In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed.
1 Peter 1:6-7