“Ring This Bell, Three Times Well, It’s Toll To Clearly Say; My Treatment is Done, This Course is Run, And I Am On My Way”
Ring Out
The video that Amanda posted on social media of Logan “ringing out” is joyous. The symbolic end of a journey and the beginning of another. It commemorates perseverance through a difficult time. That Logan is together with Amanda and A.J. at the ringing is so appropriate and necessary. Because they walked this leukemia treatment together, arm in arm, every day. And came out the other side still patient, still loving, still optimistic. The last line on the bell’s plaque “And I am on my way” tells the story. Now, we move forward.
I love the pageantry and ceremony of marking milestones. The hospital floor staff gathered and sang a song to the tune of the Oscar Meyer bologna song: “Our patients have the cutest S-M-I-L-E’s; our patients have the sweetest H-E-A-R-T ‘s, oh we love to see you every day, but now it’s time we get to saaaay; pack your bags, get out the door, you don’t get chemo anymore.”
It is fitting that the family was wearing their matching “Logan and the Muggles Against Cancer” t-shirts designed and organized by Aunt Bridget so many months ago. Those shirts symbolize the support that poured in from friends and family during this ordeal, and I am SO grateful for that! I experienced prayer by others for my family, and there is nothing as powerful as that. It continues to be emotional for me.
The Team
Each time I see that ring out video, I tear up. Cannot help it. It is the culmination of so much time, so much uncertainty, so much stress and so much pain. And the treatment was a true partnership between the family and the staff at Children’s Hospital. I met many of them. The nurses, nursing assistants, doctors, P.A.s, custodial staff, nutrition team, speech/occupational/physical therapy staff, front desk check-in staff. All of them so skilled, kind and helpful through an unimaginably difficult time. Of course there was conflict, questioning and debate. But through it all there was one constant: what is in Logan’s best interests?
As for Mom Amanda and Dad A.J., I could not be more in awe and proud. They are heroes of this story, too. Staying in the hospital for months and months. Carrying the stress of leukemia treatment. Carrying the stress of building a new home and not having a place of their own to recharge between hospital stays. Of course, Casey & Chris, and Kim & Mike, and Donna & I were happy – really honored – to host them and help in any way we could.
This Past Week
Logan and family has stayed with Donna and I this past week and it has been an exhausting joy for Donna and me. His development is on a steep upward climb as he learns so quickly these days. One of the many concerns when little ones are in long-term treatment is that their physical and mental development is interrupted. Logan seems to be making up for lost time as he learns new words and skills at a fast pace. He has, in my mind, transitioned back to “little boy” from “cancer patient.”
Eating & Sleeping
Logan is constantly eating. He knows a little bit of ASL, American Sign Language, and as he is learning verbal words we also see the ASL signs for “hungry” and “more” all the time. Logan’s blood was tested the day of his “ring out,” and his ANC was a shockingly-high 750. Such good news, because that meant that the antifungal med Voriconazole (vori) could be stopped. That drug was both necessary and infuriating during treatment, as it limited his nutrition intake and just made him feel unwell. All this to say that he is eating now! Much of Logan’s prior nutrition was being used to recover from the treatment, and now his little body can use it to grow and develop.
And he is sleeping better. Until the vori was stopped, Logan was consistently waking up about 2 hours after he went to sleep, and we suspect it was vori-related discomfort. The last couple of “vori-less” evenings that has not happened. We are hopeful that Logan can work his way to learning to sleep for the 11 hours or so he needs each night.
For now, Logan wants to be outside all the time. Care must continue to be taken, because though his ANC was 750, it normally is about 3,000. So there are lots of dirt-avoiding stroller walks, which he loves. Because he can see ducks and dogs and other kids. He is so interested in other kids, methinks, because he has not interacted with any these past 7 months. That will come in time, as his immune system becomes completely recharged. And Donna and I are anxious to be able to referee the interactions between Logan and his cousin Griffin!
Now, What?
This is maybe my last blog post on Logan’s treatment. Lord, I pray that is so. That would mean that Logan’s leukemia has remained in remission and there is no more story to tell, other than Logan’s own life story that he will write every day. Regular blood draws in the months and years to come will mark the time. And I am sure Amanda and A.J.’s sleep the night before each blood draw will be fitful – and hopeful – for good results
Donna and I are saying goodbye to Logan and his family for the time being as we will be “breaking quarantine.” Until their house is completed, they will be staying with Chris and Casey; house close is expected in early May. We will see them again soon, together, as an extended family. Logan’s aunts and uncles and cousin on his Dad’s side are longing for that.
The future is both uncertain and optimistic. None of us really knows what is in store for us from day to day and it is the same for Logan. For now, for Logan’s family, we pray for continued remission.
Thank you, from the bottom of my heart, for your love, and prayers and support, in all ways. The family made it through this ordeal through God’s grace, and because of your support. Both were and continue to be tangible.
Happy Easter.
