November 20, 2015
“Hope deferred makes the heart sick, but a desire fulfilled is a tree of life.”
He got into the car and frustrated tears began to run down his cheeks. “I thought I would be done with everything when I finished chemo,” he cried. Oh, buddy, how I wish that were true. I had hoped that when his new prescription came for his glasses, that we could be finished with occupational therapy and nearing the end of physical therapy. But when his therapists (who are excellent by the way) came out to talk to Austin and me that day, they said he had improved but there was still work to be done. They were willing to work out something, however, because they didn’t want to turn him off from therapy altogether, seeing that he may need it again in the future.
The future . . . what does that even look like?
“I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”
Jesus to His Disciples, John 16:33, emphasis mine
Cancer changes everything, and it has forever changed our lives. I heard Addy comment the other day on a small gift Austin had received: “Austin got something special because he has cancer.” She didn’t say it in bitterness or jealousy, but just as a matter of fact. Then, when similar remarks about Austin are made, Tyler will say, “Austin doesn’t have cancer anymore.” How could I possibly begin to explain something to them that I’m not quite sure I understand myself? There is this part of me that wants to come to the end of this year and say, “Well, I’m glad that is over!” I want to add it to our family’s testimony and wrap it up in a neat bow of triumph over hardship—something to look back on. Yet, there is this nagging thought that it will never really be over, at least not this side of Heaven.
I know some people who get an overwhelming sense of peace after a battle with cancer, a confirmation of sorts that they are “cured.” Whether from lack of faith or because God isn’t done with us on this journey yet, I don’t have that same assurance. And because many of you have asked and I hope you will continue to pray for us, here is what the foreseeable future holds for Austin (and our family) . . .
On December 10, Austin will return to Children’s Hospital of Pittsburgh (CHP) for more testing and check up with his oncology doctors. He is scheduled to have a MRI on his brain, followed by a lumbar puncture. He will have to fast for 12 hours for the lumbar puncture (LP), aka spinal tap, and Austin has always struggled when not allowed to eat. Please pray that this does not interfere with the MRI, as he has to remain very still during this test. Pray also for peace for everyone that day. Austin tends to be anxious when it comes to MRI’s due to a bad first experience and unfamiliar nurses on the radiology floor accessing his port (he will need a contrast for the scan). CHP, especially Erika our favorite Child Life Specialist, has always been great helping Austin to stay relaxed and to get the best possible care. We are especially thankful for that! We need prayers for peace as well. There is always “scaniexty,” as one mom called it, when it comes to these tests. Austin’s MRI’s have been clear since his surgery, but you never know what the next test will show. He hasn’t had a LP since after the surgery, and it is that test that showed Austin to be high risk due to cancer/disease cells found in his spinal fluid. As you can imagine, there are concerns over the results of this test. We should have the results of the MRI the same day, but the LP results probably won’t arrive for a week or so. Sometimes, the waiting is the hardest—especially the day you expect the phone call. If the LP comes back with disease cells again, another course of action will need to be planned, as radiation is not an option so soon after his last radiation treatment (they told me it would kill everything). Austin’s doctors are anticipating good results, but we know that God already knows the outcome. We just need to fix our eyes on Him.
“You will keep him in perfect peace whose mind is stayed on you, because he trusts in you.”
Isaiah 26:3, emphasis mine
Assuming all goes well in December, Austin will have an MRI every three months for the next five years and once a year every year after that for the rest of his life. Because blood tests cannot show him to be cancer-free, these scans serve as a sort of equivalent. Austin’s high risk diagnosis means that it is more likely to reoccur, and his doctor warned us that the first two years are the scariest. In response to an email I sent recently, I was told that if it returns (a new tumor grows), “it does usually show up in the same location; however, usually the kids are asymptomatic and it is found on surveillance imagining only because there is space for it to grow (which is the resection cavity [the spot where the previous tumor was removed]) before “normal brain” is effected by it.” Upon first hearing this, I was relieved because I had been concerned about some symptoms Austin was having (moodiness and fatigue), but now that I think about it, it almost gives me more pause—to know that it could come back and I would have no way of knowing it initially. Trust in the Lord with all thine heart . . .
“Trust in the LORD with all your heart, and do not lean on your own understanding.”
As far as maintenance goes over the next several months, Austin will need his mediport (the device placed inside Austin’s chest just under the skin to provide ease of access to his veins—it has been a blessing to say the least!) flushed every six weeks. This is to ensure the port stays usable until the time it is deemed safe to remove it. Austin will also need to continue occupational and physically therapies a couple times a month until another evaluation shows he is back to age-appropriate standards.
Right now, Austin is working on building back his immune system, which means he will continue to take a preventive antibiotic on the weekends for up to several more months. He has been more tired and grumpy lately, but his doctor believes this is a side effect of the chemotherapy treatments. As a family, we are trying to find a new rhythm and looking forward to a getaway over Christmas and Austin’s Make-a-Wish trip to Disney World in the spring. The small things, like being able to sign Tyler up for basketball, feel so good right now. The “normal” things in life are a blessing!
“Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.”
So many thoughts and worries flood my mind. I want to prepare and train Austin for the future, for adulthood, but there is this constant thought in the back of my mind that he might not make it to his high school graduation. I worry about how he will react if it comes back and the discouragement and bitterness he would have to fight against. Then, I think there might come a day when someone else is taking him to his doctor appointments and MRI’s, and that thought scares me, too, because I’m not sure I can let go. But I guess, in a way, I already have. He’s been in God’s care all along.
There is one more feeling that I can’t shake—guilt. We have met so many families since Austin’s diagnosis, both in person and through social media. They are fighting the same disease, and many others, and they are suffering. Some of them have lost precious children and they carry their grief with them. Some of them are staring down a diagnosis that offers little to no hope. Some of them have made the hospital their home. And I feel guilt—guilty that Austin is home with us and doing well. It’s not that I would change it because I am glad he is doing well. I guess it is a kin to survivor’s guilt. These families are part of our lives, and we care deeply for them. So, when you think of us, would pray for them, too? Pray for Jax and Molly’s families who are grieving. Pray for Sydney that she would get to go home before Christmas. Pray for Jack that his new treatment plan would continue to work. Pray for DeAnna and Ayden that God would do a miracle. Pray to the One who “is able to do far more abundantly than all that we ask or think” (see Ephesians 3:20).
All these worries, fears and emotions threaten to rob me of today. “Today is a gift, and it should be celebrated.” Scripture tells us that today is enough without focusing on tomorrow’s worries. It is a war—a war against my negative emotions and my doubts and the weak links in my faith. It is a war against focusing on the trial instead of focusing on the good. Satan would like nothing more to rob us of our joy. He wants me to stay in the pit of despair and for our family to miss out on all the blessings God has planned. I would appreciate your prayers that with each day our hearts would become more grateful and our minds would stay focused on what is true. Thank you in advance!
Let me leave you with these words from a song that is always a great reminder:
I don’t wanna miss
This day cause it’s a gift
I can’t miss a chance
To leave it in Your hands
Don’t know what tomorrow holds
I’m learning how to let it go
Jesus, You are in control
Of my tomorrow . . .