John J. Hagen - Updates

ReInduction II Summary

15 Chemotherapy Treatments
3 Respiratory Treatments
39 Clinic Visits
48 Lab Draws
16 Blood &/or Platelet Transfusions
10 Ultrasounds
12 Pain Team Appointments
97 Mg of Dilaudid
8 Physical Therapy Workouts
11 Inpatient Days

As you can see ReInduction II was a long, hard 77 days for John. His treatments were traumatic and his days were filled with anguish. The images and sounds of the last three months are haunting and I truly can’t bear to write the details. There were days where we just couldn’t imagine how John could get through another day.

“Never give up, for that is just the place and time that the tide will turn”
~ Harriet Beecher Stowe

And turn it did! John did not give up and right when we thought that he couldn’t take another minute of suffering he started to turn the corner. His bone marrow started to recover and his body started to heal.

John remains cancer free! He is home and has officially started MAINTENANCE! So, what is “maintenance”? It is the last 99 weeks of John’s treatment. It is “less intense” weekly treatments. His maintenance treatments are currently a work in progress. It has to be enough chemotherapy to keep Leukemia cells from ever coming back but not too much that John’s counts don’t remain stable. It’s going to take some fine-tuning and some serious patience but Dr. Pui is on the job! The majority of treatments will be in Charlotte at Levine but once a month John will return to St. Jude for an LPIT, lumbar puncture with chemotherapy to the central nervous system. Our hopes are that these less aggressive treatments will allow John’s quality of life to greatly improve.

Physically, John is making great progress! As I mentioned in a Tweet, John has nerve damage in both legs and will need to wear AFO braces on both legs. We pray that the damage will not be permanent and that with the stability of the braces and daily physical therapy he’ll build back his strength and mobility. His immune system is slowing building its way back up (but he’ll still be immune compromised for 2 more years). After flu season passes John should be able to return to @CharlottePrep for a class or two :)! He should be able to eat out, visit with a friend, ride his bike etc. He doesn’t quite have the stamina for all those activities just yet but every day he is looking and feeling better and better!

Emotionally, John is moving forward! His emotional wounds are healing and he is seeing the possibilities that today and tomorrow have to offer!

A special thank you to Dr. Pui, Martha May, Justine Rodriguez and the many other amazing people at St. Jude who carried us through the last few months. There are many reasons why we chose St. Jude, but the outstanding level of care, the dedication to curing John and compassion shown to our family while at St. Jude makes it an incredibly special place!

A huge thank you to all of you for your continued love & support! It has taken an army of people to get us through the last few months! We appreciate each of every one of you and your amazing acts of kindness!

Please continue to pray for John’s FOREVER CURE!

Love, Kathy