Last night we celebrated Christmas with my in-laws. The kids opened their presents and we went to see the Christmas lights in Newport News Park. It’s so wonderful to continue traditions Ev and I had at their age. Jackson and Abby are really enjoying and participating in everything this year.
It’s been weighing on my heart, pretty heavily over the last few weeks, about the amount of suffering that is easier to ignore than acknowledge during Christmas. It wasn’t so long ago that we dealt with our own suffering during “the most wonderful time of the year.” In 2009, Jackson was in the midst of immunotherapy treatment. I put a brave face on for him and for our family, but my heart was so very heavy with the “what ifs” and the pure exhaustion of caring for a child with cancer. In the back of my mind, I wondered if this would be his last Christmas. Would he relapse with this terrible disease and not make it through the next year?
Honestly, I don’t like acknowledging or typing it, because the thought still makes my stomach come up into my throat.
Abby was due on February 23, 2012 but came November 9, 2011. That meant she spent her very first Christmas in the NICU. Everett, Jackson and I visited her on Christmas, as did Santa, but there’s something so heavy about having your family separated on Christmas day. As I held her, I wondered what her future would hold. At that time, we weren’t sure how her brain bleed would affect her function. After spending a couple hours at the hospital, we put her sweet little body back in her incubator to rest and went home. It was just very, very sad.
I share these experiences because my heart knows more now. It may be your first Christmas without a parent, grandparent, spouse or child. It may be a Christmas of serious illness and it’s all you can do to just get by. You may be afraid like I was that this might be the last one. You may be going through a divorce or unhappy with your marriage. Or maybe you lost your job or your house or you’re estranged from those you’d normally celebrate with. You only know more about me, because I’ve shared it. We are all much more than meets the eye.
I just wanted to extend a little part of me to those just barely making it through. I’ve been there. My heart has taken so much it felt like it was permanently broken for a long time. Tonight I’m going to say a prayer especially for you – the names I don’t know – because God knows. He knew back in 2009 and 2011 when I would have killed for the “easy” joy I once took for granted. But for some reason, we’ve all got to go through our valleys to recognize the peaks. There is joy, sometimes you just have to really look to find it. God has plans for us we don’t always understand or enjoy.
That is the humanity in our struggle.
From Jackson’s Cancer Treatment Journal
Over halfway done
It is very, very hard to believe that we are over halfway done with immunotherapy! Like all phases of treatment, we’ve gotten into a new “normal” at the hospital during immunotherapy weeks. The PICU designates only two people per bedside for each patient, so since I am always there, our family takes turns sitting with me during the day until Everett makes it there after work. We are so blessed to have this type of a support system; he’s always got his momma, but a nice rotation of his favorite people each morning, afternoon and evening really helps keep him interested.
It’s so hard to explain what these treatments are like – it’s hard to paint an accurate description in words, you just have to live it. Jackson’s hooked up to leads to his chest, both lumens of his CVL are attached to some type of medication, he has a pulse-ox read on his toe and a blood pressure cuff constantly on his leg. He also takes liquid meds – Tylenol, Neurontin, Zyrtec, Voriconazole – by mouth several times a day. In the PICU, Jackson is a bit of a rarity getting his cancer treatment. Most children are there out of necessity for renal failure, recovering from surgery, being in a car accident, almost drowning in their neighboor’s pool…it’s a very serious place to be. There is little to no privacy because these children have to be watched constantly. Many are sedated. It took some time for me to dull to the intensity of these children’s illnesses, but Jackson never noticed anyway. He just waves and shows them his yo yo during the mornings he feels good enough to get out of bed. I am so proud of his open heart and his ability to make people smile.
The PICU is not very accommodating for parents to stay – it’s not the staff, they’re wonderful, it’s just the rules. There are no bathrooms in the unit, you have to leave the unit and call to come back in everytime you have to go, and I have to beg, borrow and steal to get a sleep chair to stay at Jackson’s bedside at night. To shower I have to get the secretary to go open a sleep room for me outside the unit before 10 am, if I miss that window of time, I have to wait until the next day. My discomfort means nothing compared to Jackson’s, but we are all bone weary by the time we leave
On Friday Jackson finished around 2 am and immediately had a blood transfusion. He was done with that by 5:30 am. He felt great almost all day while in the hospital. Because he had a fever on and off the last day of treatment, we weren’t allowed to get on the road until around 5 pm. That was such a great feeling breaking out of the hospital with another horrific week under his belt! Jackson fell asleep on the way home and woke up when I got him out of the car. He was very fussy, and even weirder, noticeably trembling, like when you have a fever or your muscles are just so weak from not using them. I couldn’t find anything that he wanted to do except for take a bath, hoping he would settle down and put a call into the doctor on call to ask about the uncontrolled trembling. When Dr. V called back we were taking Jackson’s temperature and there it was, another fever. Back to the hospital we went just an hour after getting home, checking into the 8th floor just about 1 am on my birthday. Jackson was pinging off the walls! Luckily that was the only fever he got, and they discharged us around 3:30 pm. We think it was a combination of withdrawal from all the pain meds and also just the antibody itself.
We began Accutane today and will continue to monitor his calcium and triglycerides every 3 days. I’m praying his body has grown used to the medicine now and he can tolerate his full dose. We’re still giving the GM-CSF shots at home and Jackson does not even cry for them. He doesn’t like them one bit, but he sits through it and we move on with our day. We’re just so proud of him and how tough he is. The boy has a definite feist to him and yet he can climb up in your lap for a cuddle and steal your heart. He has grown up SO much in the last year. In the midst of all this he’s getting older – hard to believe my little baby will be turning 2 in just a week! Was there life before Jackson?