On Friday we didn’t need to be to the hospital until 11:30 so we had a calm and comfortable morning getting up and out the door. We packed, ate breakfast, loaded the car and made the 5 mile drive to Helen DeVos Children’s Hospital.
As we rode the elevator up my mind and prayers went to Christopher that had a scheduled MRI at 11:00 that morning. We were going up to receive good news and they had rode down and later I learned that his parents had been told devastating news. Please continue to pray for Christopher (Brooke too!) and his family.
Yes! Laura the research nurse had told us that Mikko’s bone marrow scans were great! We then were given the DFMO Diary with information and a log for keeping track of the daily meds. Mikko receives 3 “vitamins” in the morning and 3 at night. We tried to get him to swallow them…..that didn’t work out so well. The trusty pill crusher came out and the medication was crushed and mixed with juice. We will work on the swallowing. On August 30th Mikko will go to see Dr. Walrus to check his blood counts and then after that it will be once a month. Every 3 months he will go in for scans in Minneapolis to make sure he remains NED. If a child relapses they are off the study.
On Thursday I did have time to ask Dr Sholler a few questions. Currently there are 22 children enrolled in the study. 10 children have just past the 1 year mark and are still NED. Without the DFMO they would’ve expected 3 or 4 of those children to have relapsed.
How does DFMO work? This is from the DFMO binder we were given….DFMO is an oral drug that inhibits Ornithine decarboxylase (ODC). ODC is an enzyme that helps make polyamines in our bodies. Polyamines are believed to be “building blocks” that cancer cells need to grow. Polyamines are found in certain foods. High polyamine levels and increased ODC activity is commonly found in neuroblastoma as well as many other tumors. Research has shown that DFMO reduces ODC activity and helps to block polyamanie production in cancer cells, potentially inhibiting cancer cell growth.
Because DFMO works to inhibit polyamanies, there are certain foods that they would like Mikko to avoid eating (Foods with high levels of polyamines.). This is a suggestion. It is not required. Here is a list of the foods: (Click to enlarge)
When I talked with another mom she told me her family totally avoids the foods at the top of the list (Grape fruit, oranges and orange juice) and eat the others in moderation. Bananas are high on the list and I’m always shoving those Mikko’s way. We will need to change our eating habits some. Dr. Sholler and the nurses told us not to worry too much about the list, but keep it in mind.
When we left we stopped downstairs so Mikko could get a chocolate mint ice cream cone and Jon his portobello mushroom sandwich (gross). We were then on our way and if luck is on our side, we won’t need to return. Our plan was to head north and cross the Mackinac Bridge and take the long way home. Well we did cross the bridge…in the dark of night…so we saw zip, stayed in a “sketchy” motel, got up and hit the road. We got home around 4:30 this afternoon.
Mikko was thrilled to see his brothers! He had Jeffrey playing with him in no time and he hit Michael up for a game of football on Xbox.
This evening when I was in the kitchen Mikko came up to me and asked, “Mom, can we get Summer Slam?”. Summer Slam is the WWE pay perview wrestling show. I shook my head no and he stated, “What? I’ve been through 20 rounds of radiation, 6 rounds of chemotherapy, a stem cell transplant, I went to Michigan…..(long pause) Wait a minute.” He then ran over to Jeffrey and I heard him whisper, “What else?”. They were in no the guilt trip together! I said no again and I told him to go ask his dad. I have a feeling that we will be paying for Summer Slam. I informed Mikko that he used his “treatment statistics” for the last time to get what he wants. His response, “What? I did do all that!”. Yes you did my dear, yes you did.
Tomorrow all 3 boys start their fall hockey clinics! Jeffrey and Michael will be playing 3 on 3 games and Mikko has skills clinics. This evening Jon and the boys were going through hockey gear, making sure everyone was set. Mikko needs a new stick because his old one is now too short.
We are thrilled to be home and so thankful that Mikko is able to participate in the DFMO study. It is a blessing that he is NED and we fiercely pray he remains that way.
We keep on keeping on!
Love, Hope & Blessings,