If you are reading this, you may already know about our son Tucker. In November of 2022, Tucker was diagnosed with Rhabdomyosarcoma, a cancerous mass in his sinus cavity, at age six. And if you haven’t read our first entry, I encourage you to, as it will give a better picture of what we have been through in Tucker’s pediatric cancer journey.
When I ended our last entry, I stated that we didn’t know how our journey would end, but we knew that God would be faithful. And as I sit and write this, I am here to tell you of the gift that the Lord has given us. Tucker is no longer six years old. In fact, he just celebrated his 9th birthday! What a blessing. Getting to celebrate Tucker’s birthday this year was truly amazing. It was the first birthday in 3 years where he had absolutely zero need for medical intervention. At 1.5 years into remission, he no longer has a g-tube placed and his immune system is up and rocking again. This year he got to play with friends, run around in the dirt, and just be a kid. And it was so, so good.
As I sat to write an update about all that the Lord has done and continues to do in our lives, I’ve found it to be much harder than I expected. Recounting all that we have walked through still leaves a pit in my stomach and tears in my eyes. I remember the heartache and fear like it was yesterday. I also remember the intense nearness of the Lord as we walked through the deepest valleys we have yet to face.
And as I look back at the last near 3 years, I stand in awe. Awe of not only the healing that the Lord has brought to Tucker’s body, but awe of the work that He has done in our family through this trial. We are not the same people who entered this journey on Nov 15, 2022. And for that I am immensely grateful.
I remember standing in the kitchen with my husband, Robert, one evening in early fall of 2022. We were talking about the upcoming year and all that we hoped to see happen. We talked about our family unit and our children. We named specific hopes and specific ways that we wanted to pray for growth in our family. More patience, greater compassion and kindness toward each other and spiritual growth, to name a few. Who would have known that on that specific day, that the Lord had orchestrated our very conversation and stirred those very desires within our hearts because He wanted to answer them in such a very specific way? It was not a coincidence that He answered every one of our prayers through Tucker getting cancer. We did not desire for our son to get cancer, nor would we wish it upon anyone else. But what a kindness from the Lord to have allowed us to see His hand working, even before we had a clue of what was coming. He was placing the pieces together. He was working out His sovereign plan already. The Lord was softening our hearts and placing desires deep within us that He knew He would fulfill and answer through the journey that He was going to take us on. He was being faithful before we even knew to look for it. Because that is who He is. Faithful.
And as our journey has progressed, He has remained faithful.
No one really talks much about what the other side of chemo treatment is like. And I suppose there are a few reasons as to why. First, it seems so anti-climactic to bring up struggles post chemo treatment. While in treatment, there are urgent needs and urgent issues. Along with those urgencies are very visible changes. No one would expect you to be A-OK while being pumped full of poison, losing your hair and experiencing a myriad of side effects. And if they did, it would be grossly out of place.
Second, there may be a sense of survivors guilt. How could someone who is still alive, when others have not made it, possibly have anything to say? How could they possibly struggle when they still get to have breath fill their lungs? What could the family possibly struggle with that is worth speaking about, when they still have their loved one with them?
Third, we so often think of struggles as “seasons” that have a distinct beginning and end. And sometimes, speaking of continued difficulty and challenging that idea, is not well received. After all, remission is supposed to be after the season of “struggle”. It is in the “healed” season. Therefore, the effects of the cancer and treatment must have disappeared. And if not all of the struggles are gone yet, they probably shouldn’t be focused upon, as they are now in the “healed” season.
And Fourth, cancer is not a self-sufficient friend. It is needy. By the time of remission, that needy friend has demanded a great deal from not just it’s host, but also those in the circles around them. And sometimes, people are just plain cancered out.
We like to call this “cancer fatigue”.
I ran into an old high school friend recently, who is also a survivor (going on 5 years) and summed it up quite nicely. We were discussing post treatment life and she said, “Sometimes it’s even harder now. Just because you look normal, everyone expects you to be just as healthy as before. No one expects you to still struggle”.
It takes an incredible amount of patience, compassion, love and strength to continue to sit with someone in the midst of their cancer journey. It often didn’t just “poof” begin. There is often a story of struggle and heartache leading up to the diagnosis. And it doesn’t just “poof” end. No matter if they are 1 year in remission or 5+ years and given the title of “cured”. They (and often their family) have been changed by the long slow dance with this disease. They may look the same on the outside, but they are not. And the physical and internal struggles, don’t change just because the title of disease progression has. They still need people to sit with them, cry with them, and pray with them. They still need to see God’s faithfulness in the day-to-day struggles.
As we’ve now walked with Tucker into 1.5 years of remission, a lot has changed. He looks mostly healthy now. And praise the Lord that in comparison to where we have come from, he is! But all of his struggles haven’t ended just because he was declared in remission. For example, though he looked healthy, it took nearly 10 months post treatment for him to be in the right position with oral intake to remove his g-tube. And even now, we still face unexpected setbacks with food. Incidents which can end in a deep emotional response.
The Lord has been so faithful to give us wisdom, as we’ve been learning how to walk through a great deal of highly emotional responses. These emotional responses can result from many different situations. And though they may look it, they are not simply a tantrum or simple outburst. A simple bump by a sibling can cause immense emotional distress. Not because of the bump, but because of the pain that Tucker has had to endure in treatment. A simple bloody nose or stuffy nose is never quite simple, because it is often accompanied by a deep fear of cancer returning. Tired eyes which feel scratchy reinstate a strong concern that he will lose his vision again. Even the simple mention of a doctor’s visit is met with a handful of questions and an immense need to know what lies ahead.
Tucker has been through more in his short life of 9 years than we, as his parents, may ever fully understand. And walking alongside Tucker through these highly complex emotional responses hasn’t been easy. We haven’t been perfect in it. But James 1:5 says, “If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him”. And we have seen the fruit of asking for God’s wisdom. He has provided wisdom beyond our understanding.
We have also seen Him continue to comfort Tucker’s, and our, heart as we continue to walk forward. When fears arise, we continue to remind Tucker of all that God has brought Him through. Our God who was faithful all throughout treatment, continues to be faithful. The Lord has healed Tucker’s vision, protected him through a code blue, protected him in the midst of allergic reaction to chemo, given him strength to endure months and months of accesses, healed his body, allowed him to run and play baseball again, given him perseverance to eat again and walk normally again, among other things. Though this journey hasn’t been filled with ease, it has been filled with blessings. And we have seen so many undeniable blessings amidst the storm. We cannot look to our right or our left without seeing the faithfulness of God.
We also see strength, compassion, and wisdom in Tucker well beyond his years. The Lord has grown in Tucker a compassion for other children who may be enduring struggles and medical issues themselves. When he sees another kid with a feeding tube, he knows what they are going through. The look of understanding in his eyes in undeniable, as he smiles at another kid in the hospital who is in a wheelchair or is struggling to walk. The concern that he shows for those hurting, is a direct result of what the Lord has allowed him to walk through. And we are already seeing how the Lord is using that in Tucker’s life.
We have also seen a gentle boldness in him, as he chooses to respond in kindness to children who have teased him over his short stature. Kindly, he explains that he had cancer and went through chemo and that is why he is so short. When adults have continued to speak to him as a 6-year-old, giving me a sideways and somewhat disbelieving glance at the mention of his actual age, he has extended grace instead of bitterness. We have seen the excitement in him, as he has chosen to share boldly, and not be afraid of what he has gone through.
Though Tucker’s cancer treatment has finished, his cancer journey has not. As we’ve walked this journey with him, we’ve seen the Lord’s sovereign hand, comforting guidance, miraculous healing, abundant blessings and continued faithfulness. And as we continue walking forward, we look forward to how the Lord will shape Tucker’s testimony. We pray that, as he grows, the Lord will open opportunities for him to share the love and faithfulness of Jesus with others.
As we have faced different struggles in Tucker’s cancer journey, we have continued to try and point Him back to God’s faithfulness. As an adult it’s easy. I can easily recount time and time again where the Lord has been faithful and trustworthy. I have studied who He is, His character and have seen the proofs of it time and time again in my life. Each instance growing my spiritual roots deeper and giving me a better understanding and a deeper trust in who God is. But, as a young child, there aren’t as many moments of remembrance of Gods faithfulness or God’s proven character. So, we would try to focus on small (to us) moments and situations where the Lord brought Tucker through specific obstacles. For example, we would pray before a port access. This was something that Tucker was very scared of. And we would pray for strength. And though Tucker would be scared, he would eventually be on the other end of that port access. And I would purpose to talk about it with him, pointing out that God gave him the strength to get through it. It is seemingly small moments like that, that have built up Tucker’s trust. Even to the point that He started proclaiming, “God gave me the strength to do that!” We have also purposed to speak boldly of God’s character and provision within our family. It isn’t uncommon to hear, “God provided xyz for us today”, or some version of “God is faithful!” or “God knew!”. And the more that our children hear and see us point out who God is, the more they understand who He is. And the more they understand who He is, the more that they can trust Him. We would also talk through biblical examples of people who faced difficult circumstances. We would talk through how the Lord provided for them, protected them. Some examples are Joseph, the Israelites, Paul, etc. Seeing the way the Lord brought them through their struggles, encourages us that God will bring us through ours.
I think the most important way that a couple can protect their marriage through deep sorrow is to first and foremost seek the Lord. When we draw near to God, we draw nearer to each other. Spend the time talking to the Lord, pouring out your heart, and allowing Him to sooth your aching soul. It is tempting to want your spouse to be your ultimate comfort in a time of deep sorrow, but if we expect that from them, we will ultimately be let down. They are not God, and they do not have the ability to comfort in the way that our hurting heart needs. Our heart needs God, first and foremost. Secondly, keep the lines of communication open in the marriage. As we walk through deep sorrow, our needs change. One moment you might need a quiet space, and the other you need to talk. Sometimes you might want input, and other times you just need to vent. Communicate with your spouse. And make time to listen to each other. Try to share what is on your heart, no matter if it is uncomfortable. Let your spouse in to see the inner workings of your heart. For some this may be easy, and for others this may be difficult and take considerable effort. But it is worth it. And with that being said, actively seek protect your marriage against inappropriate emotional connection with a person of the opposite gender who is not your spouse. Though many people may genuinely care and ask how you are doing on a deeper and personal level, do not share deeply personal feelings with anyone of the opposite sex who is not your spouse, unless it is common knowledge information. Invest in same gendered relationships for deeper encouragement. But protect and respect your spouse, even if they feel distant, by not allowing emotional connections with someone other than them.