Where has a month gone? I haven't meant to stay away so long. It feels as if time, which used to stand still most days last year, is moving along at a regular, consistent pace these days. There is a new rhythm of life, as of late, that has a comfortable beat. A vibration, depth, that keeps us moving along. We are getting to do more normal things, in a play it safe restricted way, like grocery shopping after 10:00pm. But I LOVE these slices of "normal."
Wil is slowly becoming a hipster with the fuzzy, fluffy hair he is growing on his head (covered with his usual knit skull caps) and his ever expanding beard! I know people who don't know him might see it as messy, unruly, and just plain scruffy. But for us, this is a daily reminder of health and is a sign of life. And as I annoy him with touching his locks every chance I get (and offering it up to others!), it brings me calm. It clarifies hope. Progress. And so I opened up a savings account for Hawaii this past week.
Wil's counts are holding strong and continuing to improve in most areas. After my last blog, his skin became a beet red rash, head, fingers to knees, and was deemed skin GvHD, grade 2. Miserable, uncomfortable. BUT a true sign that those donor cells are strong and in charge. Sure, they are attacking him because they figured out they were in a foreign land, but they have the strength to fight off other invaders, like cancer. A grade 1-2, that can be treated, actually lowers his chance of the leukemia coming back. A rash of resistance!
The skin GvHD has responded well to the mammoth doses of prednisone used to treat it (he was started at 80mg and most people feel crazy at 20-30mg!). Within 2 weeks the red was gone, and my little beet turned into a shedding snake. Skin falling off everywhere. ALL THE TIME itchy. I could go to work and come home and know exactly where he had been by the dust bowl trail he left behind. I know that sounds terrible...and I would like to say I have the stomach for all types of positive progress, but it was just plain gross. For both of us. And for our house cleaner!
And prednisone...the usual side effects have been strong. He can't sleep well and is hungry 24/7. Mood wise though he has been HAPPY and, my man of few words, is a chatterbox now too! A marriage on prednisone=Wil crawling into bed at 5:30am, snuggling in, arm around me, and whispering in my ear, "Pancakes" or "I'm sorry I ate the corn chiips."
Side note: I had NO idea we had corn chips and hope they were not expired. He has never really ate corn chips before! But, apparently, he found the bag digging in the bottom cupboard in the middle of the night. I know he loves me, and I hear those words too, but lately, the only thing on his mind is carbs.
He is now tapering slowly off the steroids so the side effects should calm down. Although the plan was to be off the last immunosuppressant next month (for his 6 month post transplant!), due to the GvHD, he will be on it for another 3-6 months, post steroids. The heavy steroids have also made a way for EBV to show up in his labs. At this point the EBV counts are low so no treatment is needed. We will monitor, just like we did for the CMV, and they will treat if needed.
He is also having strange stinging episodes that they can't figure out. Stinging to the point he is doubled over in pain. We will see a neurologist next week. Fibromyaligia is a word they are throwing around. His medical team has said the symtoms just aren't something they see. Wil...normal???? We do hope we can find some answers. He is already on Lyrica and using essential oils to help with the chemo induced neuropathy. This stinging stuff is a whole new level though.
Wil's first response to his oncologist about the extended plan for the immunosuppressant was "My niece won't be happy,"
Just the day before she had begged her mom and Wil to just stand in our yard so she could yell "I love you" and see his face from the door.
7 months.
It's been over 7 months since she's seen him. I know she is not the only one that misses him, but there is an undeniable string from her heart to his since the day he first held her at the hospital. It's strange and sweet and unexplainable. And it's been devastating to see her cry and beg to see him.
So on Sunday, as hard as it was for him to see her and not be able to spend time with her, he stood at the door. She stood in the yard. They smiled. And my heart broke. And my sister's heart broke. And then he asked her to come back and hug him real quick. This 8 year old, who is rough and tumble, along with her little brother, hugged his leg ever so gently, almost as if not to break him into pieces. We all stayed intact...at least physically.
The next day at clinic was when Wil said to his oncologist that his niece wouldn't be happy. And she replied, "You're not at such a high risk that you should deprive yourself or your niece any longer."
Some of the best. news. ever. General precautiuons still in place, but a green light to see kids again.
His first call after clinic was to his number one cheerleader: "Do you want to come over for lunch tomorrow?" "OK. I love you unkie." Click. Call dropped.
My sister later told me she came screaming and busting into the bathroom to say she could see him again. And that next day? The first real hug in 7 months? She leaned her head on his shoulder, closed her eyes real tight, and just breathed. Signed. That depth is a place of love most adults never let themselves get to when someone they love has cancer. I wish I could have caught that moment on camera, but it was so real and organic it was not meant to be caught. We did snap a few other pics later :)
Life is good. The depths of last year has brought us into other depths of love and happiness that could only come out of the desperation and trauma of facing this journey head on...together. And for those that have stayed with us and travelled the depths with us, like my niece, they can feel the intensity of this new exsistence too. Walking with those you love through the mud and muck will never be easy. It will tear you apart, limb by limb. You will sometimes sleep in the shadows of death and fear the worst. You experience the agony and immeasurable pain at times. Feel out of control. And, like my niece, beg for it to be different, to be over. But if you can lean in anyway, and stay put, the other side of this depth, it will fill you too. It will fill you whole again.
Much Love.
