Where have I been? Why haven’t there been more posts? I have been right here at home deep in the normal, hectic routine of being a working mom with 3 active sons. Work, shuttling kids here and there, laundry, dr appointments…all that stuff we moms get to do. I have also been trying to make an effort to get to bed at a more reasonable time. In the past most of my writing has taken place late, late into the night. I think that has been the biggest change and I have been in bed a few nights by 11:00 and that is a huge improvement!
The past 2 days Mikko and I have been at the Journey and Discovery clinics at the U of M. When we walked into the waiting room of the Journey Clinic I saw Jenelle and Lilah Kelley. What a small world. Little Lilah is just so adorable. She was there to get labs and to begin the process of collecting stem cells. Lilah is going to kick neuroblastoma just like John! I wish I’d more time to visit with Jenelle. Maybe we can meet up sometime.
Mikko and I met with Dr. Smith at the Journey Clinic for Mikko’s 1 year post stem cell transplant. She was excited to see him and said all his labs were normal, he looked great, we could start the process of immunizations over, and she’d see us in another year. Great visit, good news and we were out the door….until the Child life specialist grabbed us.
She had 2 tickets for tonight’s Wild game that we could have, but she needed to know right then and there if it would work. Jon is in Duluth for work, I promised Michael I would take him to the college fair, Mikko had 5 more hours of testing on that same day… I passed and you know what hit the fan! I had one ticked off 7 year old! He was crying, saying mean things…he couldn’t understand why Michael had to go to a college fair when he isn’t even going to college for 2 years. I got him on the elevator and the tantrum continued. The elevator would stop, someone would get on, he’d stop, person would get off, Mikko would start up again….we went through this process all the way down! I felt really bad, but he had missed 2 days of school last week with a fever, he was missing 2 days this week and I just didn’t think he needed a late Wednesday night on top of it. To distract Mikko we hit the new playground by the Journey clinic donated by John Sullivan of the Minnesota Vikings. It worked, he blew off some steam and then we headed across the street to the Journey Clinic. It is there that the neruopsych testing took place yesterday and today. Long story short… Mikko tested fine and his cognitive development is on track for his age. The doctor reminded me how very lucky we are considering all the harsh treatment he’s been through and that he’s seen many neuroblastoma patients with a different outcome. The doctor did make a strange comment to me in regards to John playing hockey, “Protect his head.”, he said to me. Huh? I don’t think he likes the fact that he plays hockey. He told me he’s little and I need to be careful. I just said thank you, but I was thinking, ” He skates with little kids, he’s more likely to hit his head fighting with Jeffrey in my living room, than out on the ice…we are in the business of living life and getting the most out of each day”…just a thank you and out the door to get home in time for hockey practice. It’s great for strengthening his ankles. 🙂
John is in such a good place with his health… a great place! The other night I was reading back on his Caringbridge site of when he was in the hospital for the stem cell transplant. What difficult days… so glad they are behind us. I’m still working on not letting the fear of relapse take away from NED right now, but at times this is very difficult. In the last 2 weeks I’ve learned of 2 children relapsing. Each with different cancers and neither neuroblastoma. When I hear news like this, my heart sinks and frankly it just totally ticks me off!
Abby – AML Leukemia – Tomorrow 9/26 is a year from when she was first diagnosed. I don’t know Abby or her family well, but I met them, like so many others, in the playroom on the 7th floor at children’s. Abby is friends with Alannah who has Neuroblastoma like John. Abby started treatment again on 9/23/13. Prayers to Abby and her family.
Josh – Ewing Sarcoma – Diagnosed 12/11 Cancer free 11/12 Just relapsed this week. This one hit me hard. When Michael came home from work at DQ and told me, I felt like someone had hit me in the stomach. Josh is the most positive, nicest young man….just breaks my heart that they have to go through this again. He’ll kick it again! It’s curable, he’s tough and his great attitude will see him through. Not to mention that he has amazing parents and a great younger brother.
When I hear of relapse….it can send me into a panic and my thoughts can beat me up . I truly want to practice what I want to live and believe…”Each day is a gift…. live it to its fullest…one day at a time…Keep on keeping on”. If I could truly believe what I say, maybe my hair would stop falling out at the alarming rate it has been for the past several months and maybe, just maybe I’d find the will power to not seek comfort in chips, Hershey bars and all that crap. Maybe if my stupid foot would heal and quit hurting I could move this sedentary body! BooHoo…I need to quit it! I have tons of things to be thankful for. We are BLESSED!
I was told last night when I got home from the doctor by my dear husband to NEVER turn WILD tickets down! Lesson learned.
Love, Hope & Blessings,
Didn’t make the 11:00 deadline to slumber tonight! I’m hungry too!