Words of Hope

Last Friday Jon and I took Mikko to his monthly appointment at Children’s for his blood draw, urine tests and physical exam. This appointment was with Dr. Rawwas. This time his blood and urine samples were handled upstairs in the clinic. There was a new guy (to us) drawing John’s blood and dealing with us for this part. I ‘m pretty sure he thinks I’m nuts after all the reminders and questions I was throwing at him. (Do you know some of this blood needs to be on ice? Do you know some goes to Michigan and some stays here. Same with the urine…some stays here…It was taken at 7:15 this morning…It needs a label on it…are you sure you drew enough blood because in the past I thought there were several more tubes…and on and on and on). I wouldn’t be surprised if next time he sent us down to the lab.

When Dr. Rawwas came in he had asked us if there have been any more complaints about leg pain. Nope, not a word. He examined John and then we talked a little more about his thinning hair. I had read on a Neuroblastoma support site about Dr. Sholler (The doctor we saw in Michigan.) suggesting Melatonin and Zinc help with this. We talked for a while about dosages and agreed to give it a try.(I had also discussed this with our contact in Michigan, but didn’t want to start John on it until we talked with Dr. Rawwas about it.)

Then Dr. Rawwas took us by surprise by what he said next. I wish we could remember it better, but both John and I were rather dumbfounded by his unexpected comments. It was something like…Dr. Rawwas wanted us to know that based on how John responded so well to his treatment that he is confident (not sure if that was the exact wording) that he will not relapse AND he smiled. This was HUGE for us to hear and see. Of course both of us had to well up with that happy news.

I debated whether to share this as I know there are no guarantees in life, especially life with cancer. I also know there have been children who have successfully completed the COG protocol for Neuroblastoma and have relapsed. But I also know that Dr. Rawwas would not say anything that he didn’t believe and his words of confidence lifted our burden of worry  a bit. His comments on Friday were a gift to Jon and I,  allowing us to lower our guards just a little and breathe a little deeper…to live each and every day as the gift it truly is….pushing the worry further behind.

Of course we will always worry to some degree. If not about relapse, then about the possible long-term side effects from the drugs that rid John’s body of his stage IV Neuroblastoma. One day at a time…we will keep on keeping on.

We are almost 2 years out from John’s diagnosis on April 6, 2012. It’s crazy to think of the life we’ve led for the past 2 YEARS!



Many adults think of Michael as a quiet kid, keeping his thoughts to himself. Both he and I are night owls and it is late at night that we have some of our best discussions. It usually happens as he comes up out of the basement around 11:30 or 12. This happened last Thursday and it is a conversation I will remember for  a long time…forever. It all started with my talking about getting ready for John’s doctor’s appointment the next day. Michael always wants to know what kind of appointment and what is going to be done. Then the questions and comments from Michael started:

He told me that John’s cancer had been very difficult for him. Right then and there I had to FIGHT tears because I knew if I cried the conversation would be over in a flash. I listened to him and I won’t share that part of our talk, but man it tugged at my heart. He then asked me what was the most difficult thing for me post John’s diagnosis. I answered and he answered. (Remember it is Michael leading this entire conversation.). Were there ever times during John’s diagnosis/treatment that I  thought he was going to die. Ugh…again we talked and talked for a long time.

It was a good conversation and I am so thankful that Michael feels comfortable enough to talk with me as he does, but it was a reminder to me how cancer turns the entire family inside out and upside down. It has touched  us all and left a mark on each and every one of us in different ways. Looking back there are things I’d do differently. Most importantly I would find a way to be more present for my big guys. I also wish we all would have went to counseling to help us deal with the chaos our lives were thrust into. Hindsight…right?!

This post has taken me FOREVER to write tonight. When I would stay up until 2 or 3 in the morning I had much better luck writing. The house was quiet and I was alone with my thoughts…able to put a few sentences together. It has been extremely difficult to find this time before 2 in the morning. Tonight I put John in bed, took a shower and crawled into bed to write/ type while the guys watched the WILD game. The dog was with me and stressing out from all the yelling/cheering coming from the living room. She was constantly trying to get on my lap (65 pound lab!) Jon came in and wanted to know what I was writing and he was bugging me. I told him it is far to late in my journaling to censor me. Later Jeffrey did basically a cannonball onto my bed and wanted to know what was up. Jon came back in to bug. Jeffrey came back in. Dog was still trying to get on my lap again. Jon was bugging again.

It is midnight and Michael just came up from the basement to share that all Scandinavian countries are working towards passing legislation to ban homework. Too bad he lives in the U.S. and has a chemistry test tomorrow, a paper rewrite that will take a minimum of 45 minutes(I’m told) and math. I have also been informed that I have no idea how busy he is….waaaay busier than me. 🙂

Happy April 1st!

Love, Hope and Blessings,


5 thoughts on “Words of Hope

  1. Super News!! It feels so good after having had Cancer to hear those words.After nearly 6 years I heard The words That I could consider myself cured.Not the Dr,but I could. A person must just enjoy each day to the fullest…..Yeahhhhhhhhh John !!!!

  2. Thank you for sharing these moments, Shelly. We think of you all and love hearing such hopeful, wonderful words. Happy Spring!

  3. What a wonderful post Shelly! I love the encouragement from Dr. Walrus and how life is a little more “normal” every day in the Gegen house.

  4. Great news for all of you. It is a very personal thing that your family has gone thru & I appreciate the candor that you share with all so us. We all would do things differently in hindsight but we are living in the moment. Jon couldn’t have had a better supporter & advocate!

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