Posted on February 7, 2018
I've been meaning to sit down to write an update for months (literally) but time has gotten away from me! I'm happy to report that Leo is still doing well. If you follow me (Meghan) on Instagram you know that Leo's scans in December were clear as expected. I don't think I realized how much relief I would feel from knowing that his scans are still clear, which sounds silly in retrospect. It really helped us relax and enjoy Christmas with the kids.
At the end of October Leo got the Chicken Pox and we were admitted to the hospital for a week. The case was managed poorly and we feel that it was completely unnecessary for us to be admitted. His case was no worse than you'd expect from a healthy child and progressed normally. Nevertheless, we are grateful that he avoided complications and we were all thrilled to be discharged on the 30th in time to trick-or-treat with Charlie! Other than that, we've thankfully been pretty much free of complications other than a few fever scares and one disastrous NG tube placement, which is fine now.
We celebrated Leo's 2nd birthday over Thanksgiving with our families. He had just gotten chemo and next year we are looking forward to a birthday free of health-related issues. Shortly after his birthday were his midway scans, and once we knew they were clear we started the maintenance phase of chemo where we only have to visit the clinic every three weeks. Previously we had chemo every week which was very difficult for all of us. He was scheduled to get one drug each week and two other drugs alternating every 3 weeks. The weekly chemo isn't supposed to cause nausea or impact his blood counts much, but Leo seemed to have a hard time with it. He was very nauseous much of the time which seriously impacted his appetite. We also had to delay chemo a few times because his counts were consistently low. Because of this, we've spent a lot of time at home this winter which has actually been quite nice. It has given us a chance to connect as a family and think about our priorities and need for more family time and less time outside of the home.
Since beginning the maintenance phase, his appetite has increased dramatically! He now asks for "sumpin' to eat" about 20 minutes after he finishes his last meal or snack :) He has been consistently gaining weight without the help of tube feeds. He actually gained a full pound in the last three weeks which is so relieving and gratifying for us to see. He is still eating a very strict diet with no sugar, processed foods, grains or dairy, and that will continue indefinitely.
In early December, we found an incredible integrative practitioner who specializes in the treatment of childhood cancer. I truly feel like it's divine providence that we moved to where we live and can see her in person. Through working with her, we pursued some genetic and nutritional testing and discovered that Leo has a few rare and severe genetic mutations that predispose him to leaky gut and impair his body's ability to absorb key nutrients including antioxidants. There is a correlation between children with cancer and children with these particular gene mutations. Prior to this discovery, we had been giving him 13-15 supplements daily and juicing several times a day. Since learning about the mutations and discovering the severity of his leaky gut, we've changed our focus to an intense gut-healing protocol designed by our integrative doctor. The results so far have actually been incredible. His particular chemo regiment is extremely constipating; most children need to take Miralax daily to help them have regular bowel movements. Unwilling to give him the prescription laxative, I've tried dozens of natural things to get his bowels moving and none of them have had meaningful or consistent results. Since starting the new gut-healing protocol, he's been having healthy bowel movements every single day, including the days after having chemo. His nausea is also significantly better than before; we've gone from giving him 3 full days of anti-nausea medication to 1.5 days and we have cut the dose almost in half. It's definitely still an uphill climb because the chemo itself destroys the gut lining, but it's a battle that I think we're winning.
Thankfully we were able to avoid the crazy stomach bug that seemed to hit everyone around Christmas. About a month ago I was hit with the flu and I knew that Leo's counts were dropping. Chris ended up getting it and Charlie too, though his seemed to be more mild. I made an appointment with a practitioner who does IV vitamin therapy and we brought Leo in for a dose of IV vitamin C. His counts were rock bottom and he was the only one of us that didn't get the virus. I'm firmly convinced the vitamin C is the reason, and we've decided to keep up with IV vitamin therapy for him for awhile. It's a great way for his little body to absorb nutrients while bypassing his damaged digestive tract.
Last night we returned from a 4-day trip to Florida to visit our siblings who go to school there. We found some crazy inexpensive tickets and got the green light from our oncologist the day before we left. The first two days Leo was feeling pretty crummy since he was coming off chemo, but overall both of the boys really had so much fun and I think a healthy dose of vitamin D was just what the doctor ordered for all of us.
Emotionally, things have been very up and down. Some days are great and some days are terrible. He has a fiery personality and dealing with him on the bad days is physically and emotionally taxing. It's difficult to watch him feel so crummy after chemo, and then start to feel better, and then feel bad again when his counts drop. Then he starts to feel great, and we hit him with another round of poison. When his counts are low there's the fear that he'll get an infection and become septic or face another life-threatening complication. In a recent study, of 18 children that passed away from stage III Wilms, 14 of them died because of complications from chemo or secondary infections. Despite his strong prognosis, stats like that remind me that we're still very much in this battle.
For the first 6 weeks of treatment we were just trying to get through each day, and then one day I remember looking at a picture of the boys that I took two weeks before Leo was diagnosed and I just started sobbing. I was hit with an intense wave of grief for the life we once knew. For awhile it was hard to see families with healthy children living a seemingly perfect life. I longed for life to go back to how it was before cancer became a part of it. In one sense we feel such a strong community supporting us, yet some days I still feel very isolated and find it hard to relate to others. It's sort of an out-of-body experience. Thankfully, I've met a few other cancer moms and it has been really good to have those relationships. A diagnosis of childhood cancer doesn't define you or your child, but it does change you. It has been difficult to find the words to express what this experience has been like, which is partly why I've had a hard time writing updates. I want to suffer beautifully, but the grief is still very much a part of this experience for me.
On a happier note, our schedule last day of chemo is March 16, meaning we only have 2 treatments to go! At our last appointment we started talking about the next steps. We'll finish chemo, and three weeks after his last chemo we'll have scans. Assuming the scans are clear, his port will be removed the following week. From there we will have monthly checkups at the clinic and scans every three months for 3 years. After 5 years, he'll be considered cured. We're preparing to move into the "next steps" program at the hospital which is for kids who have finished treatment but are still being monitored with regular scans and checkups. From there (usually 3 years post-treatment) we'll join the survivorship program, where the focus will be long-term survival and minimizing late effects. During all of this, we will be focusing heavily on strong nutrition, targeting supplementation and healthy lifestyle choices for our entire family. We will also continue working with our integrative doctor to monitor his health. In my mind, his port removal is the day the healing truly begins for all of us. We are in the process of applying for a few different programs that help families heal in various ways, and we'll begin applying for Make-a-Wish in May! We are very excited for his wish to be granted and are giving a lot of thought to what would bring him the most joy and healing. Perhaps the most exciting event this coming year is the arrival of our new baby at the end of June. It has been such an incredible joy and blessing to have a new little life to look forward to in the midst of all of this. It serves as a constant reminder that even though life will never be the same, there are beautiful and happy times ahead of us. The boys are VERY excited and insistent that the baby is a girl! We'll see if they're right in June :)
I can't wrap up the update without a word on Charlie. He is doing really well. We've started homeschooling which he absolutely loves, and we're in the middle of reading the Little House on the Prairie series. We're about halfway through with Farmer Boy which is my favorite, and it's the first thing he asks to do every morning. He still loves baseball and hockey and is all signed up for summer ball. Chris built an ice rink in our backyard and he has gotten really good at hockey! He plays on it almost every day. He is such a good and kind boy but also very energetic and sometimes exhausting. He and Leo are truly best friends. For awhile he was confused about Leo's cancer and where he stood in the midst of it. That seems to have gotten much better. One day he told me that when Leo is done with chemo, he wants to make a shirt that says "My Brother Defied Cancer" hah! His own words :)
Thank you all so much for your endless support. It's a constant reminder to us of God's unending presence and love. May God bless you all,