Maintenance

I apologize for the long space between posts this time. The truth is, I’m tired of cancer- and I’m only the MOM! It makes me weary. I’m exhausted by the way it has wrecked life as we knew it, and I’m tired of being “strong.” I’m actually really tired of even talking about it. It’s interesting how six months ago I thought, maybe if I learn enough, and study enough, and experience enough with Jace, then someday it will be easier, and my knowledge will serve a purpose. Right now, I am longing for the day when the word cancer doesn’t control everything. Someone told me cancer is the disease of love, because everyone around the cancer patient is called on to serve so “lovingly.” Until JACE can call it the disease of love, I have real issues with that theory.

Despite my negative attitude, as of Monday at Primary Children’s Hospital, Jace is officially in the maintenance phase of his treatments. He received a LP and chemo in his port. Everything went fine, and although Jace has been weak and sick this week, we think he will continue to improve daily before his next treatment. Jace also received several prescriptions for daily oral meds. On different days of the week, Jace will take different combinations of medicines. Actually let me explain our treatment calendar for the next 2 ½ years.

To my best knowledge (I’ve been known to be wrong) this is what Jace is looking forward to:

*Once a month chemo treatments (Vincristine) in his port. *Once every 3 months hospital visits with anesthesia and LP. *Five days monthly steroid treatments. *Daily oral meds ranging from 3 pills on certain days up to 12 or 13, and *continued caution with sickness, fevers, and exposure to illness.

As I said, this will continue for 2 ½ more years. Jace is 7 years old now. This will continue until he’s 10. But don’t worry, they’ve told us. IF the cancer COMES BACK, it should manifest again within 6 months of the end of his treatments. hmmmmm. I can’t even comment on that last concept.

Last night I was discussing with family members close to me if I should continue writing posts for the blog. I admitted that it takes a little energy (of which I’m lacking), and I don’t get much feedback. Some suggested that I would let down the readers. My reaction is that I don’t even know who the readers are. Others suggested that maybe since Jace is in maintenance, things are different and people won’t be reading anyway. Any thoughts?

I’m guest speaking this week to a group of students. I’m going to tell them about the lessons I’ve learned from enduring something very difficult. BELIEVE me, the lessons are there. The greatest lesson of all for me right now is one in humility.

One of my favorite quotes for a while is this: “Self-searching is the means by which we bring new vision, action, and grace to bear upon the dark and negative side of our natures. With it comes the development of that kind of humility that makes it possible for us to receive God's help. ... We find that bit by bit we can discard the old life-the one that did not work-for a new life that can and does work under conditions whatever” (by anonymous author). I’ve said it before, but I wish so badly there was a different way for me to receive said humility-- but I’m still working on the new life and dreaming of my ability to accept our “new” conditions.

Many parents of cancer kids have told me that things get easier with time. I’ve been exposed to so many people who have fought this very fight, and I know it is a global challenge for thousands. But I’m sitting here alone typing right now, and the truth is, I feel quite isolated. People have even said the words, “Been there, done that,” but when they say those words I think in my mind—no you haven’t—because you aren’t Jace’s mom, and you most definitely are NOT Jace.

But Jace IS in maintenance, and for that we are grateful. His treatments will slow down, and we will continue to watch him hit a few baseballs. This week he could barely run at all, so he decided he’ll just have to start hitting it “REALLY FAR,” so he doesn’t get out— and again, Jace inspires with his positive attitude. Do you think his mom could stand another lesson or two?

*A Positive*

We had a great weekend! Hayden’s basketball team played in a March Madness tournament, and we were able to go as a family and watch him Friday night. Jace felt well enough to go to baseball practice Saturday morning too, and after watching Hayden’s team take the championship that afternoon (Go Madison!), we went bowling and playing at the Rex. It felt surreal that we were enjoying one activity after another, and Jace still had the stamina to keep going. When he asked Matt to carry him out of the Rex Saturday night though, I hoped he hadn’t over-done it. He said his legs “hurt bad!”

Sunday morning Jace could barely walk, and Monday his CBC showed why. He was extremely anemic again and needed ANOTHER blood transfusion. I was actually shocked at how low his HCT was, because he didn’t show signs of it, other than his legs hurting.

So Monday, Jace spent the better part of the day at the doctor’s office and then the hospital for his blood draw, cross, and type matching. They sent him home with two identification bracelets and told him to keep them on until he received his blood the next day. I had to laugh when we pulled up to Hayden’s baseball practice, and Jace ripped off the bracelets before he got out to play with “the guys.” He said, “I can’t wear these! Don’t take any pictures mom, or the hospital will be mad at me.” A few buddies met him at the practice, and the healing power of being “one of the guys” prevailed. Jace came home from practice with muddy knees from falling so much, and he was worn out, but he didn’t complain. He had the time of his life throwing, catching, and hitting a baseball. No one would have guessed his two hours at the park were sandwiched between two days in the hospital.

The blood transfusion went fine. Jace was so full of energy last night; he tried to wrestle everyone who came to our house! (Thanks Dayton, Dylan, Dawson, Reagan, Carson, Skye, Daisy, Gabby, Krew, Brynlee, Luke, and J’dee for putting up with him!) Jace’s blood type is A Positive, and as I watched the bag drain into his body yesterday, with the giant A on the side, I meditated on what the A might secretly (in Amy world) mean. Lots of words came to mind, but I finally decided that it just stands for itself, and someone out there with *A Positive* blood saved our little boy again…...our amazing *A Positive* Jace.

( Jace loves HOT and SPICY food now. )

Six Months Later

My mind is swirling with things to write about today like: low numbers, treatment, maintenance, baseball, spring, home-school, 600 books read, etc. But the theme of today has to be our SIX month anniversary. I know I’ve said it before, but if anyone would have told me one year ago what my next year would bring, I would have crawled into bed and never risen. Fortunately life doesn’t work like that. Fortunately we are given days of trials instead of entire months at a time- and those days are filled with resources that force us to survive— resources like prayer, faith, friendship, and hope. Surprisingly those days add up too, and six months later I’m shocked at the very raw reality that life goes on, and although unpredictable, the enduring characteristic above anything else is LOVE. After all, cancer wouldn’t scare us so much if we didn’t love those it plagues, and we wouldn’t empathize with others if we didn’t love our own so much.

Last night I watched Jace try to run the bases at practice. His body is so different than it was last spring. His legs and feet are hurting him, and he finds it difficult to stay on them for long periods of time. Hayden and I shared a knowing glance, as even he realized Jace is slower and weaker. It’s an interesting position for both boys- one of catching up- and even Matt helped me have confidence that Jace will grow stronger. But my hope is that no matter how slow or weak Jace is physically, his battle will always stand for more. My brain tells me all the rational things for which I should be grateful: Jace gets to play baseball this spring. Jace is setting an example of endurance and mental strength. Jace has taught many of us important life lessons about courage and faith…and on and on…but I recognize my own worldly weakness when I admit that this morning I also prayed that Jace will be able to run again—like he used to run.

My wise Aunt Judy who has battled cancer off and on over the years described perfectly one emotional issue I’ve been feeling lately. She said, “Nobody likes to be pitied.” It’s not a pretty position. As I sat at practice last night I found myself wanting to talk about what Jace used to be able to do, and I realized that conversation might ask for pity. So today, our “Six Months Later Jace” is fighting the good fight. Even with his bald head and low numbers, he is trying to run those bases like the fastest runner alive- and there is no way anyone can pity that.

I Prefer Pink

Last weekend I noticed how pale Jace looked. His face and head were almost transparent, and he was a little weaker than usual. My worries were confirmed as we received chemo Monday. His Red Blood Cell count was very low, and he needed another transfusion. For some reason my mind freaks out when I know he needs blood. I’m not sure if it goes back to a primitive instinct that blood is life, but whatever the cause, this scared me again…and I was just feeling so strong!!

Because of the necessary precautions taken with donated blood, and making sure it is appropriate for little cancer babes, MMH didn’t have the blood ready until Tuesday morning. We spent that entire day at the hospital watching the bright red life drip into his body, and I prayed silently a thankful prayer for whoever donated that particular bag. I’ve never realized the importance of donating blood until now, but if you ever have- THANK YOU. By about 4 o’clock, Jace’s cheeks started to have a little color, and his smile was a little more genuine. We left the hospital only to proceed to his chemo treatment which he has received now four days in a row.

This Friday morning as I write, my over-whelming feeling is one of gratitude. All week long Jace said cute things that reaffirmed his positive attitude. As soon as we would walk out of chemo treatments, almost every day he would say something like, “I did it!” or “I made it through another day.” He really is mature about the whole treatment thing. This isn’t to say he hasn’t emotionally regressed the last six months, and Matt and I are seeing we might have some very unique parenting challenges ahead of us. Many of you who knew Jace pre-cancer know he was intense anyway, but this has heightened, and we find he is now very emotionally charged in every way. I’ve expressed to some of you my feelings that if it were just “CANCER” it would be big enough…but there are SOOOO many other issues that come WITH cancer—emotions, fear, life changes, money, insurance, support, opinions, etc. I’m just grateful for the resources and people in our lives who are making things easier. I HATE that something so big had to happen to my son to drive me to such humility and reliance on our Heavenly Father—but so many times my comfort comes from knowing that He hears and answers prayers.

Jace just crawled out of our bed and found me on the couch typing. He has a difficult time walking in the mornings, and the first thing he said was, “Where is the bowl?” Although he hasn’t been especially nauseated the last month, it’s never far from his mind. Normally I love the color white. It’s so pure and beautiful. There are many wonderful WHITE things, like warm hospital blankets and clean, sterile hospital walls. But this morning as I look at my cute Jace, I’m thankful he isn’t transparent. This morning I’m grateful his cheeks are pink.