Today is a very special day here in the Gegen home. Tonight John took his very last dose of DFMO!
For over 2 years he has taken 3 pills in the morning and 3 pills at night with the goal of keeping him NED (No Evidence of Disease). We have driven to Children’s Hospital in Minneapolis for monthly lab tests and urine analysis. Every 12 weeks we have endured the roller coaster of emotions that come with scans….and now here we are tonight. I knew this day was coming, but still it didn’t seem real, I must be mistaken. Yesterday, I sent out an email to John’s awesome nurse questioning whether it was really the last day. She quickly responded yes and sent me an encouraging message (She always seems to know when I need one.). There I sat at my desk, after school, with tears streaming down my face. It wasn’t a sobbing cry…just that dang stream of steady tears I couldn’t stop.
The tears – I knew why they were there…
Tears of Gratitude – To John’s wonderful team at Children’s who’ve fought to get him where he is today, taught us what we needed to do, and encouraged us when we needed it the most. Today our son is a happy, healthy, rowdy, athletic almost 9 year old, with an energy tank that does not quit!
Tears of Change – Our relationship with John’s team is now changing. During John’s initial treatment from April 2012 to May 2013, it felt like he was in the hospital more than he was home. Since August of 2013 John has had those monthly visits and 12 week scans. Every month we saw Dr. Rawwas and Cindy and they reassured us that John was doing well, calmed my Mom nerves and sent us on our way refueled to face the next month. I flat out asked Dr. Rawwas at a recent visit what I was going to do without seeing him every month and he told me that he is just a phone call away. As long as things are going well there are no more monthly visits and scans move to every 6 months! John will have his end of treatment scans in October and nothing until April!
Tears of…., “It’s scary being off of treatment” – We decided to place John on the DFMO clinical trial because of the high risk for relapse for kids with Stage IV Neuroblastoma (50%…..35% being in the first 2 years). Of all John’s treatments for cancer DFMO has by far been the easiest, with minimal side effects. (I am anxious to see if his hair will thicken and eyelashes grow back. John used to have the most beautiful long brown eyelashes.) It gave us some peace in our minds and hearts. Now we’re flying solo on a wing and a prayer. Ok….far from solo, but you know what I mean. Dr. Rawwas has told us several times that with John responding so well to treatment and being so far out now, that he believes that he is going to continue to thrive. I imagine for the rest of our lives we will be fearful to some degree.
There you have it and it is awesome news! The fact that John is where he is today is truly amazing and a blessing. Sometimes I look at him and I am just in awe. To think how terribly, terribly sick he was…to where he is today…Awesome, Awesome, Awesome!
I haven’t posted in such a long time because our family routine has been as normal as ever. My writing has been about John’s journey, our family’s journey and I see that shifting once again with the scans moving to every 6 months. You don’t need or want to hear about our day to day lives, but I will fill you in in October with scans and then hopefully not needing to again until April scans. Who knows…I may throw something in between there.
I can’t thank you all enough for going on this journey with us. We are filled with gratitude for each and everyone of you and so thankful for your support. You’ve been there from our darkest days, to our most triumphant hours, to the peace of the most normalcy we’ve had in years. You have blessed us.
Before I sign off for a while, I want to give you a family update in pictures:
We are blessed.
Love, Hope and Blessings,