I started this post well over a week ago and worked on it for several days. It’s super long and that’s what happens when I don’t write more often. I didn’t realize I had so much to share, but I am not going back and editing it because it was how I was feeling at the time I was writing. Emotions can vacillate from day-to-day as we all know and that is just part of the process for me. Yesterday was just the best day. We had a taste of spring weather and it solidifies that sunshine can always boost my mood. On our way to church, the sun was beating down on our van and I had sunglasses on – oh it was so wonderful! We took the boys to ride bikes around the lake while Hattie, Grandma, & I hoofed it. Then the boys swam for about an hour at the YMCA. Andy’s strength is definitely gaining, but Chuck & I decided we are going to return him to physical therapy. I hope it doesn’t take long to get him back to walking normal and running. He did “run” last night. It wasn’t really running, but we’ve been timing him as he runs from the front door to our sliding glass door and back and he shaved off a good chunk of time, so he got himself a root beer float as a treat for working so hard.
Today marks the day where we have com full circle. Andy’s neck was noticeable swollen one year ago today. The kids had stayed at their Grandparent’s house for a sleepover the night before and I got a called from my mom-in-love saying, “not to alarm you or anything, but Andy’s neck is noticeably swollen this morning”. I told her not to worry, that is was surely nothing and if he was feeling fine, then relax. When he got home, I checked him out and it was definitely swollen, but I wasn’t worried because he had had a cold and I just figured he was an extension of that – some random infection. Instead, it was the day that forever changed our family’s life, yet we blissfully had no idea the upheaval that was about to come.
This past Friday, I spoke with Andy’s local doctor who referred him to Portland. I wasn’t expecting to see her, but when I did, I just had to thank her for being so proactive and on top of things. Her quick actions ultimately helped Andy to be a low-risk leukemia patient by being diagnosed so early. She told me at the time she didn’t really think things were going to be so dire. She sent him for the CT scan and thought he’d have some infection in his neck, obviously the story turned out completely different. She’s so sweet and I love she’s a Christian. She told me that she’s been praying for Andy and that she is so pleased to see me and know that that he is doing so well. Her genuine caring means so much to me. I’m sure it’s not often enough that doctors and nurses get thanked for what they do, but I try to make it a point to thank Andy’s care providers at each appointment for all they do for him and our family. They are the make it or break it when you have a hospital stay or appointment and it’s so important to me that I show gratitude for the care they give our family.
Here is the start of my original post:
I’ve put off writing this entry long enough. It’s so weird to me that we’re closing in on a year of living life with a cancer diagnosis. There are have been so many times recently that I have finally felt free from the weight of cancer. Not having to drive to Portland umpteen times a month has definitely helped (we logged in nearly 10,000 miles last year), but it’s also left a big hole that has been hard to fill. Our schedule was dictated for so long by doctor’s visits. Now it feels rather empty. I was warned that I’d probably feel like this. Honestly I laughed and thought to myself, “as if”, but going from multiple weekly visits to only one visit per month is really weird. I partly blame it on the dreary Washington weather and think if it was summer and the sun was shining and we were always camping and playing at the beach it would be different, but really it just doesn’t feel that normal to me still. It’s not like I miss the staff at the hospital. It’s just hard to describe. It’s a weird emptiness. Like trying to pick up the pieces after they have been scattered on the ground for such a long time. Some of them are missing and they are hard to find so they can get stuck back into the puzzle of life.
Other events have made this transition a little difficult for me too. Things go along fine and we feel like we’re back in the groove of things, and then something will come along and shake me up. Recently we learned that a little girl who we met through the coarse of Andy’s treatment has relapsed. She has a Wilm’s tumor and this is her second relapse. Now she has to once again endure chemotherapy and fight for her life. This precious girl is only 5 ½ years old. I haven’t told Andy because I don’t want him to worry about his own health, but this is so upsetting to me. It’s just not fair. Another shake-up happened when we learned of a cancer diagnosis of a gentleman from our church. After some testing, it appeared the cancer was pretty contained to one area, but when his doctor went to remove the cancerous tissue, he found it was drastically worse than they anticipated. So bad his wife told me had his doctor known it was so bad, he wouldn’t have even operated. Even worse is there really isn’t much options for treating his cancer. He will undergo various chemo meds and radiation, but he really needs a lot of prayer and a miracle. So very heartbreaking. And really, there are a million more stories just like those two and hearing them hits too close to home and it’s often more than I can bear.
On a lighter note, Andy has hair!!! It’s so sweet and downy-soft like a baby. His hair never grew very quickly and I can see it’s going to be quite some time before he has his first haircut. It’s still sparse and you can see his scalp in spots, but overall it’s filling in nicely. I was a little worried it was coming back lighter because as the hair started coming through it looked blonde, but now it’s definitely brown. His lashes are long and beautiful too. He even has hair growing back on his sweet little legs.
Overall he is doing really well. He’s really enjoying all his extra time. It’s a slow progression to build his body back up, but he’s been going swimming several times per week and, when it’s nice outside, a little bike riding. We had a beautiful weekend a few weeks ago and he managed to ride around a local lake on the bike trail on both Saturday and Sunday – it’s about 3 ½ miles around. He had some breaks along the way, but did so well, dad sprang for taking the whole clan to Baskin-Robbins for ice cream!
Andy still cannot run by himself. Maybe he just chooses not to, but he says it hurts his sides. He will run pushing a grocery cart or some other item that stabilizes him and he has ran holding hands with me, but not by himself. We didn’t see his main doctor when we went to his last appointment, so we’ve continued to dodge the “physical therapy” bullet. I’m still on the fence about if we should take him. It’s not that it will hurt him, but it’s 3 hours out of my day for driving and the appointment. We’ve been trying to do things at home and I recently broke out the Pilates exercise machine too. He seems often like he’s two steps forward, one step back. I know the swimming, biking, and playing are all going to build him back up because I’m witnesses it happen, but he’s often lacking the desire. I find it odd he’s not fighting more for getting stronger, but maybe it’s the weather for him too. He’s such a stubborn kid, but he just is stubborn the wrong way right now. I pray his heart softens and he will see the value in getting back to his old self. I’m saddened that he doesn’t want to play outside more often. He was my kiddo who would dig outside in any type of weather, it didn’t matter, it was his outlet for fun and what he lived for. Now he chooses to stay inside and play or color. I hope that he warms back up to going outside soon. Maybe when sunshine returns it will be easier or maybe I just have to kick him outside and force him to like playing in dirt!
He’s had two appointments since my last update. They were both very routine. The first was on January 22 and he had a back poke of Methotrexate and a push of Vincristine in his port. His labs were great and he weighed in at 63.1 lbs. His ANC was 1450 which was right where they wanted it to be. His second appointment was on February 19. This appointment was only a push of Vincristine in his port and lab work because his weekly Methotrexate is taken at home orally during this part of his treatment cycle. His labs again came back great, however his ANC was a tick higher at 1720. The goal is to keep it between 500 – 1500, however his daily oral medications won’t be changed until he’s been out of range two months in a row. So for now all his oral medications stayed the same. The oral medications are what keeps his immunity suppressed and vary based on the day of the week and point in his cycle. Thankfully we’re given a calendar each month. Basically he has Prednisone twice per day for the first five days of his cycle, oral Methotrexate once per week so long as he doesn’t get a back poke of Methotrexate, Septra antibiotic twice daily three times per week, calcium supplements twice daily, and 6MP every night at bedtime. I’m to thankful that I have a trusty pill box to keep this all straight!
At his most recent appointment, he was 64.4 lbs, so a little bump up. I inquired about his weight gain and wondered if only 1 lb was okay since he was about 70 lbs when he was diagnosed. His provider that day told me it was great and reminded me that he’ll be doing little growing while he’s on therapy. Um, what?!? She told me that while kids are on chemotherapy that they really don’t do much of any growing. It basically pushing the pause button on growth, but as soon as therapy ceases, he will have a rapid growth spurt. I knew that he hadn’t really grown because he’s the same on our wall growth chart at home as when I measured him back in April, but the real proof came when I compared him and his cousin in height. I was surprised his cousin is now several inches taller. Andy is only two months younger and they have been close to the same height for as long as I can remember and Andy actually surpassed him a year ago Christmas by just a smidge. It’s weird to me to think Andy will stay about this size for another 2 ½ years. He was always tall for his age thanks to daddy’s tall genes, so maybe he won’t look too short when he’s done with his protocol.
Andy had a follow-up MRI on Wednesday, February 27, to scan his brain to see if the clotting he had back in May had dissolved. He wasn’t looking very forward to the MRI since it’s nearly an hour of holding still. He lucked out this time because the technician had some headphones so he could listen to the radio during the scan. Apparently, the old pair they had were too big to fit inside the device that goes over the head during the scan so this option is new at this location. It was a welcome relief to him and helped the time go by much faster. The tech even complimented him on how well he held still. I was so thankful because he had a terrible cough from a cold he caught and I was worried he’d start coughing during the scan and they’d have to repeat some of it. Thankfully that wasn’t the case! I got a call from the oncology office the next day sharing the scan showed no signs of any clotting and is a “normal” brain scan – praise to God! I wasn’t worried it would be a bad scan per say, I was just praying that it would look good and the results we got were the best possible ones. What makes this even better is that his doctor lowered his blood thinner dose from therapeutic to prophylactic (ie: a dose that’s preventative to ensure that he doesn’t have any more blood clots). He now has only one shot per day and the volume is less too (8,000 units once per day vs 10,000 units twice per day). He was so excited when I told him the news and really who could blame him? He’s had in the neighborhood of 650 injections of just blood thinner since he got his first clot – ouch!
Andy’s next appointment is March 19. He will have a back poke of Methotrexate and a push of Vincristine and the usual labs, plus he is scheduled for an ultrasound to check his arm and neck where he had the other clots. I know back in May they found the ones in his arm all dissolved and I’m hoping the one in his neck is gone too.
Things really are pretty smooth sailing compared to how they were. It just adjusting to our new “old” life again. I’m thankful for all that is behind us. I can’t imagine having to relive last year. When I look back at the things I wrote, I am overcome with emotion. It takes me right back to that day and even tho I know the outcome, it’s still really hard because I can still feel the way I felt at the time. I’m so glad we didn’t know all the ups and downs we’d face in the beginning, it would have been too much to know all those things. I guess that is why we, as humans, have a limited vision. God knows we can only handle seeing what is set in front of us. It’s too much to see and know what the future holds. He sees everything, but knows the we are too fragile to handle more than today. I was cleaning out my filing cabinet the other day in preparation for filing our taxes and I found receipts and different paperwork that took me back in time. A receipt for some dress pants I bought Chuck for the father/daughter ball last February. Andy had cancer then, but we didn’t know it yet. A receipt from the outlet mall on my birthday when we stopped to buy Andy some longer jeans on our way to Seattle for the weekend (he’s still wearing them and they are still too big!). He had a swollen neck, had been to the doctor, and was taking an antibiotic. We just expected it would go away in a few days, yet he was filled with cancer. Oh how it breaks my heart to think back and not know he was so seriously sick. No one knew, there was really no reason to suspect he had anything but an infection. While I was cleaning right after Christmas, I found Andy’s calendar notebook I made him for school. I opened it up and time was frozen. The last date he filled in was the day before his local doctor sent him to Portland for more testing. The day our world was completely turned upside down. I pray that we never have to have another day like that, I just don’t think my heart could possibly take it. I praise God every day for his healing hand being on Andy and how he’s brought our family through this awful journey having more faith than I ever knew was possible. We still don’t understand why this journey is ours, but I continue to pray Andy’s story only brings glory to God.
The kids’ memory verse last week for Friday school seems very fitting for the road we’re on.
“Trust in the LORD with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And He shall direct your paths.” ~ Proverbs 3:5-6