“Only in the darkness can you see the stars”
John J. Hagen“Only in the darkness can you see the stars”
~ Martin Luther King, Jr.
We knew ReInduction II would be hard and we tried to prepare ourselves but nothing we could have done could have prepared us for this round of treatment.
ReInduction II is 3 weeks of intense treatments. John has only been able to push through weeks #1 & #2. So far he has had 14 treatments, 1 Intrathecal procedure (chemotherapy to the brain & central nervous system, 1 respiratory treatment, 7 transfusions and 5 ultrasounds. Week #3, the HIGH DOSE treatment week, is on hold until his body recovers and gains some strength.
He is struggling with the side effects of back-to-back treatments. The nerve pain from VinCristine was crippling. He was on HydroMorphine for 12 straight days! We tapered him off the narcotics but he suffered from withdrawal, anxiety attacks, shaking and nausea. Watching my 12 year old detox is certainly never something I thought I would ever experience and I hope he never has to endure the process again. His liver and kidneys are under pressure to process the toxins and they are showing signs that are stressed. The strain is causing his body to hold onto fluids, producing an anti-diuretic hormone (ISADH). His steroids and PEG-L-asparaginase treatments only add insult to injury. His body is painfully bloated. John cries that his body and face are disfigured. His body is beaten down and unrecognizable to John. His bone marrow is very suppressed. He has low white blood cell counts, low platelets and low hemoglobin! Almost daily blood and/or platelet transfusions are supporting him until his bone marrow recovers. He is bald, only a few eyelashes hang-on to his swollen eyelids and light fuzz covers the area where his eyebrows used to be. He spends most of the day sleeping and barely has the strength to walk. His immune system is non-existent. To top it off, he is currently inpatient at St. Jude with Typhlitis, again! We can’t wait to push through week #3 and treatment recovery!
The quest for John’s Forever Cure has its cost, suffering. John is truly trying to find strength within him self but at times I can see the darkness consume him. When I see John close his eyes in pain or fatigue I tell him,
“Only in the darkness can you see the stars”
I tell him that the darkness that surrounds him has given us the ability to see the stars, life’s blessings. I haven’t asked him to share with me his stars but I share my stars with him.
My son is alive, MRD NEGATIVE & CANCER FREE. That is life’s greatest blessing and the brightest star in the darkest sky!
We are blessed to be surrounded by family and friends who love and support us! We are incredibly blessed to have the BEST of the BEST taking care of us at St. Jude, Dr. Pui and Martha May!
Enjoy your family and friends this Thanksgiving Holiday! I hope you will try to share your “life’s blessings” with each other.
Happy Thanksgiving! Thank you for loving John Hagen!
Please continue to pray for his FOREVER CURE!
Love,
Kathy
Reader Comments (7)
I wish I could hug you. I am praying so hard. May God wrap you all in His loving arms. May He touch John and may you all feel His Peace. Much love, Cynthia
Kathy,
I have been looking for updates and wondering how John is doing. I am so sorry that he is suffering. I can only say that this world is for pain and suffering, because if we make it to heaven there will be NO pain, sorrow or suffering. Life on earth is full of struggles so we can one day enjoy the Kingdom of Heaven, God Willing. Boy do you all deserve to go to Heaven! Please remember that we think about you often and love you and your family. I wish we could see you and help you. I wish that John didn't have to go through that. I know it is hard and I can't even imagine, but please stay strong. I send you warm hugs!
Our love to you and Rich, John and Isabella!
Maria and Jim
Kathy, John is the brightest star. His strength, spirit and unstoppable determination shine through everyday, He will get through this and will be back home soon. We think about you everyday and hope you all find the strength to keep fighting. Remember 'dig deeper if you have to'. We love you. The Cahill's
We in the Salmans family are so sorry to hear what John is going through, which sounds about as bad or worse than anything our son Peter went through in cancer treatement -- Chemo and major surgery -- for Osteosarcoma as we approached Christmas 2009. It is also hard on you as parents and on Isabella. Eventually, and I know you have a long road with leukemia, you can look at this in the rear view mirror and remember your son's humor, courage and grace during treatment. It's probably a testament to the human spirit that once your son is cancer free, those memories will be stronger than your memory of the toughest times of suffering. We're sure that John is an inspiration and that this experience will give him a resiliance and perspective on life that will stay with him forever. But what a way to achieve character-building!
At St. Jude's, you are in one of the best places in the world for John's treatment. We join all the other prayers for John and the Hagen family.
Love you so much and praying. You are an amazing mom. May you continue in strength gathering support as you go. Your posts are so difficult to read. The pain John feels, the pain you feel, is so real. You are brave to face this head on. Thank you for putting words to your journey. Your family is precious to me! Merry Christmas.
John,
I was shopping over the Christmas Holidays and went into Anna's Linens in Denton, Texas. They were supporting St. Jude Children's Hospital. I donated money and wrote in LARGE LETTERS: JHUD John Hagen Unstoppable Determination and put it on the front door. I'm praying that you continue to have the strength to get through some of your darkest days. Keep reaching for the stars little buddy!
For others who are reading this message, you can donate to St. Jude Children's Hospital through the following website: https://shop.stjude.org/GiftCatalog/donation.do;jsessionid=grTQQbQCPfhk00pydCTBKgpFMTXmGr8d6RjSyT9bcGdv1Dbq6dvG!-300652185!2147085612?cID=13805&pID=23530&sc_cid=ptn33&tngsourcecode=THWANNAD013
John, been meaning to send you a note for awhile!! However, not a day goes by that I don't think about you and say a prayer. Want you to know been thinking of you, your parents, and Bella! I recently got to meet your aunt, she is so proud of you and your strength and determination.
Take care of yourself and when you're able, stop in Starbucks and say hi.
God bless,
Heather Diaz