Learning to Live with Fear

Steve McKinionUncategorized6 Comments

First, an update from Harrison’s clinic visit on Tuesday:

Harrison is in Consolidation, a phase intended to kill any leukemia cells remaining after Induction. Although Harrison is in remission, there are still cancer cells hiding throughout his body. As such, this is a pretty intense phase, so we have to be on the lookout for low numbers. Earlier in this phase he needed a blood transfusion because of low hemoglobin. He’ll probably get another one later this week or the first of next week. If he doesn’t, we’ll be both grateful and surprised.

His counts:

Hemoglobin – 8.3 (norm is 11.5-15.5. Transfusion needed when less than 8)

Platelets – 407 (norm is 150-440)

ANC – 900 (norm is 2000-7500. Less than 500 is neutropenic)

He received Ara-C, which we are giving him at home until Friday. He’s also taking 6MP each day.

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Harrison and Blakely. He loves his new shirt.

 

People with cancer, and parents of kids with cancer, face fears every day. While every parent worries about their kids’ safety, growth, and well-being, parents of cancer kids have daily concerns.

The first fear is relapse. Virtually all leukemia patients achieve remission pretty easily. The drug regimen for leukemia is pretty certain. Even patients who, like Harrison don’t achieve remission during the four-week Induction period, just receive high doses of stronger chemotherapy until their leukemia is beaten back. Those who do not reach remission die from the therapy. Harrison’s nearly life-ending stroke is an example of how the treatment kills kids before achieving remission.

Preventing relapse is the bigger challenge. In the early years of treating leukemia, every patient relapsed after having achieved remission. So oncologists learned that cancer is good at hiding in sanctuary sites such as the brain and testes. Some patients still relapse in the bone marrow, but most relapse in one of these other two sites (which is why male patients are on treatment for an entire year longer than female patients. Successful treatment for leukemia is determined by a five-year event free survival (EFS). For at least five years parents fear relapse.

The second fear is infection. Because these kids are immuno-suppressed, they are susceptible to each and every disease. Hand-washing and Purell can go only so far in preventing infection. For us, we have to keep two other kids away from infections that would never affect them just as much as we need to keep Harrison away from other sick people. And infections that would simply be an inconvenience for the rest of us become life-threatening for Harrison. Parents have to fear that at any time their child, who is already having to fight cancer, might also have to fight off a fungal or bacterial infection. When you read about kids dying from influenza, for example, you can be sure that many of those are cancer kids.

Another fear is the treatment itself. Oncology is not exact; remember that physicians practice medicine. Dozens of clinical trials are designed to see how little chemotherapy is needed both to reach remission and to prevent relapse. They know how much is needed, now they want to know how much they could leave out, because of both short-term and long-term effects of the treatment.

In the short term kids might have a stroke, they might have an allergic reaction, they might have neuropthy, they might suffer cardiac arrest. In the long term these kids lose some cognitive capacity, have organ damage, face sterility, and are psychologically scarred by the terrible experience.

Every day and night parents of cancer kids wonder what side effects their child will suffer, not if their child will suffer them.

For us, these fears, and a thousand others, are all real. We cannot imagine them away. We wake up in the middle of the night and race to see if our child is breathing (like all parents do with their first child). Our hearts stop beating every time the phone rings, afraid the doctor might be calling with more bad news. We jump at every cough, sneeze, or headache. We see symptoms of cancer is our other kids, and actually stop to pray they don’t have it too.

But we are grateful that the presence of our Lord is an ever-present help (Ps. 73). He gives us a peace that smooths the sharp edges of our fears.

He gives us the presence of his people as a place of refuge and comfort.

He gives us his common grace in the wisdom and expertise of the doctors, nurses, and researchers.

The kindness of our God is often shown in the kindness of other people. Not a day goes by that our entire family does not recognize the kindness of people toward our little man. We only wish we could say thank you enough.

Our biggest request for prayer right now is that Harrison’s mindset towards his medicine would change. None of us would enjoy taking dozens of pills. We’re not asking for Harrison to enjoy taking medicine, just that taking medicine would not prove to be such a terrible experience for him. We get the meds in him, but they don’t always stay. He would prefer not to have to take his pills, throw them up, then have to take them again (and sometimes yet again). This is frustrating him. While we have all the fears enumerated above, he has one fear and one fear only: medicine. He needs grace for that part of the journey.

6 Comments on “Learning to Live with Fear”

  1. Just wanted to let you know that my family is praying for you and Harrison daily. My kids go to NRCA and feel especially close to Harrison’s disease as I fought my own battle with breast cancer last year. The fear of it returning is always there. I cannot imagine the fear that you live with when it is your child. I am so thankful that my God was great and good and merciful, and that HE supplied me with the strength to fight my disease. I am thankful that your family has that as well. You are always in my thoughts and prayers.

  2. You have probably already tried this and am
    not sure it would work. Have u tried crushing
    up the meds and putting them in sugar-
    the super old fashioned way?
    Praying!!

  3. Hey Steven,

    I just want you to know that those fears are real and I understand that, but you and I both know that we have a God who is big enough to walk you all through them everyday. Just hang on to God and He will see you through.

    Your son is a precious young man, and I pray that he will be able to overcome his situation with his medicine. I can only imagine what he is going through, and I wish I could make it all better, but I know that when he gets to the otherside of this journey he will have a relationship with God that only few can even think about. God has a purpose for this, and he will discover that purpose as he walks through this trial. God didn’t do this to him, but He will use it completely throughout Harrison’s entire life if Harrison simply allows it.

    Steven, you and Ginger need lots of support and love. I pray, and know, that God is surrounding you both with friends and family who are supporting you both. I love it when you express your fears and concerns on here because I know then that you are walking through it and not hiding from it. I just wish that there was something that I could to make life eaiser. We may have had our differences over things in college, but my heart breaks for you and Ginger and I wish that I could make it all go away. I hope that you know that you can depend on me to be in your corner and be supportive of you and your family during this time. I further hope that you and Ginger never fail to admit your anger at this horrible disease as you walk through this journey. Anger is a part of the walk, and sometimes you may even find yourself angry with God. He understands that, and He will help you to deal with it if you get it out int he open, along with all your anger. You also may find that once you take a deep breath and exhale, you become angry for having to go through what you have been through. That is very common, but don’t harbor that because if you do it will eat you alive, let it out.

    I also want you to know that your other children need you to help them through this time. That is there little brother and they are hurting and may not know how to handle all their emotions. Please help them to get out their feelings so that they don’t become basket cases. They are precious children, and they are terrified of losing their brother. Help them to walk through this.

    I know that you know all of these things. You are a very bright young man, but I just felt a need to remind you. Steven, would do anything to help if I could make Harrison better. I hope that you believe that. No matter all the disagreements we had in college and all the picking I know that you are a God called man and that you are sold out for Jesus, and for that reason you are my brother and all the things in our younger days was simply foolishness. I love you my brother, and trust me I would do anything to make Harrison well. I feel helpless as I read your posts and wonder how I can make life better for you and for Darren Miley. Take care and keep me posted. If you need something, let me know. If you want to talk please call, 985-516-9717 and I will listen. Just promise me that you will not hide from your feelings because they will come out in time and they won’t be nice if you don’t deal with them as they arise. Talk to you later, and I am praying diligently.

    Jimmy Bates

  4. We are continually praying for Harrison and his healing… Now we can directly pray for the med situation.While our brains know fear is not of the Lord, our human sides rebel… praying God’s peace.

  5. I remember those fears so well from my Sister’s fight with Leukemia and am living with them again now that my Mother has cancer. I pray that the Lord will continue to give you strength and peace. I also pray that the Lord will give Harrison the physical strength to persevere through this tough time until better health is his again.

  6. Fear is real. It hits us at different times and moments. Our Lord has promised to never leave us nor forsake us; even in the midst of fear. I pray Harrison will know the Lord’s presence in every moment of each new day.

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