Funny how the calendar marks such distinct lines in our lives. Each a chapter of sorts, starting with January 1 and ending with December 31. Our family usually doesn’t do much in the way of celebrating the start of a new year, but I have never been so happy to escort a year out of my life as I was on December 31, 2012. Finally I can close a chapter of my life that I hope to never relive. We didn’t even stay up to see the year out, but I awoke on January 1st, feeling happy and like I was starting fresh. We had snow leftover from the day before and the thin blanket that covered the dead winter ground made everything feel new and beautiful, just like I hope our life will be this year.
I have wanted to write an entry, but after the newness of the new year wore off and we finished up a little painting home project, I made my way from the *Andy* treadmill to the one that needs me to focus on getting our life, and particularly homeschool, back on track. It’s been a hard transition because I feel like all those weeks, seven to be exact, made the transition back to school as bad as it is when summer break is over. Everyone is excited for the first day, then they remember that school is work. We read books, do math problems, have spelling and grammar so we can grow smarter, but just like any work, it’s hard (hence the name). I hate that we had so much time off because I feel like we barely got started in the fall before our schedule became so crazy. I am working to give myself a wide berth because I know I didn’t have much choice with the slew of Andy’s appointments, his two hospital stays, and then our break to celebrate Christmas. Still I can’t help be feel overwhelmed and like I’m trapped under a mountain of things to do.
It was eleven days from the start of Long Term Maintenance until Andy had a recheck a week ago Monday (January 7th). It was lovely to be away from the hospital for so long. Word even leaked to us that they had been talking about us and wondering how we were doing since it had been so long since we were last there. One gal was even going to call me because she missed seeing me – how sweet that we are missed by those who care for us each time we step through the doors at Camp Randall. While the feeling is mutual (the caring part), I have to say that I’m not to the point of missing anyone there yet. They have loved on us and been so caring and compassionate during such a dark season of our lives, but I don’t think I’ll ever miss going there. Going there is just a reminder that Andy is fighting cancer and that isn’t something that I need to be reminded of.
Of course we expected his appointment to be quick since it was just labs, but I should always remember to pack our bag for the long haul because life at Camp Randall is anything but quick. His labs came back really great except for his hemoglobin. His ANC was 1480, right where they wanted it to be (between 750 – 1500) and his platelets were low but still in a good range. The hemoglobin on the other hand was 6.6, which left us scratching our heads because Andy showed no physical signs of low hemoglobin. His doctor decided to recheck it and then the lab came back at 6.3! Eight is the cutoff point, so we knew he definitely needed a transfusion that day. Unfortunately, a blood transfusion is a very lengthy process. It takes time to cross-type and match the blood, clean the blood to make sure it’s free from anything harmful, and then the infusion itself takes 3 hours from start to finish. All in all, it took about 6.5 hours from appt check-in at 1:30 pm to discharge at 8 pm. Since the transfusion was started so late in the day, we had to go up to the inpatient floor because the clinic was closing. It was a long day that we weren’t prepared for, but yet again we’re so thankful for those who donate blood. It really does save lives! On the bright side, we got to see many of Andy’s favorite nurses up on the floor and because we were there for shift change, we saw a few favorites from night time that we wouldn’t normally see unless Andy was in-patient.
Andy’s next appointment is on Tuesday, January 22. He will receive his second chemo treatment of this phase. It’s another back poke of Methotrexate and push of Vincristine into his port. It should be pretty quick unless he needs more blood. I think as things go, this should level out and he probably won’t need much more, if any, blood products for the duration of his treatment. We’re so thankful that he’s been tolerating his at-home chemo meds so well. I had to buy a pill box with am/pm compartments for each day of the week to keep track of everything. I am not sure why I didn’t do this in the beginning, but I really should have. He also gained a few more pounds and was up to 63 lbs. when they weighed him last week, which is up 6 lbs. from his all time low right before Christmas. He’s been eating so well and I can’t wait to see what he weighs next week. He’s just looking so great and his personality is really shining through. I feel like good old Andy is back. His hair is even starting to grow back. He’s like a little fuzzy peach and reminds me of when he was a baby. He didn’t have much hair when he was born and had a little soft, cute head that I loved to kiss and still do! I was a little worried it was going to come back blonde because it was looking so light at first, but the more it grows you can see it’s definitely brown still which made my heart smile since I can’t imagine him any other way.
When he goes back on January 22, his doctor said if he’s not running, he has to start back with the physical therapist. I was sure he’d not be running by then, but the last few days he’s made a lot of strides. We found if he walks with his arms out to his sides like an airplane, he moves so much better. He has also been having fun doing different acrobatic moves like summersaults and freefalling on our bed. Things like this give me hope that maybe he’ll be able to pull off actually running by next Tuesday. I sure hope so because I’m not looking forward to the three hour chunk of time PT burns up. I can tell his core muscles are still really weak, but we’ve been having him help us a lot with things around the house to help build strength. Things like unloading the dishwasher, taking something to the other room, or getting flour out of the pantry seem like every day chores to him, but right now they are doubling as strength training for his weak body. He even push the grocery cart all through Winco twice in the past week for me, then unloaded most of the groceries onto the belt, and helped with the bagging too. The first time he helped me, he commented how tired he was after he was all done and then his arm muscles hurt for a few days. The second trip, which was a much bigger grocery trek, he didn’t complain at all about being achy, so I’m thinking he is getting stronger and gaining some muscle mass. When his muscles were hurting, I reminded him that he was strengthening his muscles just like a weightlifter would and that there is often times pain when you’re making your muscles stronger. He has even played outside a bit. First in the snow with his truck and then he went outside a few times to try to dig in the dirt. The digging is just too hard from him right now because he doesn’t have the strength. It broke my heart when he came in crying that he can’t do it. It’s hard because he really is our “can do” kid and is always happy to prove that he’s big enough and strong enough – guess that is a true quality of being the little brother. I’m sure he’ll be back digging soon, more baby steps.
Even tho Christmas has been three weeks ago, I want to remember a few fun surprises that Andy received. From a sweet family friend who also endured cancer as a child, Andy got his very own talking stuffed bacon! A perfect gift for a bacon lover! Of course you can never go wrong with gifts from Aunt Jenny. She’s so creative and comes up with the best things. Last January we took a family trip to the Great Wolf Lodge water park and Aunt Jenny captured a picture of the three boys and in it Andy was making some tuff guy face. She found a place that made giant cardboard cutouts and ordered this huge cutout just for Andy. She added a speech bubble that says, “I kicked cancer’s bleep!”. I just love it and every time I look at it, it makes me smile and truly warms my heart! And lest we not forget the magic Mr. Santa Claus brought to Andy’s stocking – his very own authentic Mack Bull Dog hood ornament. Our family had a truly wonderful Christmas and we are blessed beyond measure.
On behalf of my entire family, we appreciate those who continue to lift Andy up in prayer. We believe God is the ultimate healer and answers prayers. Andy still has a long road ahead of him before being deemed “cured”. We deeply appreciate continued prayers for full healing, strength, and endurance as we continue down this windy road. He has a fighting spirit and I know it will prevail.
“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. ” ~ Romans 8:28