I must admit that my biggest struggle these past six weeks is a crisis over the goodness of God.
Never once have I doubted God’s ability to heal my son, either in an instant or through the three year treatment. I confess God the Father, the Almighty.
But more than once my trust in God’s goodness has wavered. Maybe I shouldn’t confess to that. While trusting his ability I have often questioned his willingness to heal. Not because I think God is evil or mean or cruel, but my love for my son and my desire to see him well clouded what I know to be true: God is both great and good. He is not “out to get” my son, regardless of how I have sometimes felt. I know that God loves Harrison more than I love him. But walking in that knowledge has, I admit, sometimes been tough.
That’s why I am grateful for those who are walking through this with me, but aren’t being burned by the fires. Those whom I know hurt with me and my boy, but nonetheless cling to the goodness of God on our behalf, interceding with God, have been my rock in this time.
Romans 8 tells me that there are times of suffering when I cannot pray, or think rightly about God and his goodness. I’m often there. But it also tells me that in addition to those wonderful men and women who are praying for and with Harrison, there is Another who stands with us: the Holy Spirit. On days when I can, I try to remind myself that the Spirit who indwells me, my son, and God’s people, prays for us when I cannot even come up with the words to say. And as you pray for Harrison’s healing, be assured that the Spirit of God participates with you in that wonderful ministry. Thank you for joining our Triune God in his work of healing Harrison.
Lachlan and Blakely have been wonderful during this trying time. They’ve not complained about losing out on so much: our annual Christmas trip to Mobile to see family, our planned summer mission trip to Scotland, and so many little things throughout each week. But yesterday they both were very disappointed. But for a good reason.
Two weeks ago, as the doctors were baffled with Harrison’s lack of response to chemotherapy, plans were put in motion for a bone marrow transplant. The first thing doctors needed to know was whether Harrison has a sibling match for his marrow. Family matches offer the best chance at successful transplants.
So Lachlan and Blakely gave blood to be tested.
Lachlan couldn’t wait. He was excited to walk into the clinic, stick out his arm, and take the needle like a man. What fourteen year-old boy doesn’t want to impress people with his courage? He didn’t argue or complain.
Blakely was a different story. What thirteen year-old girl wants a needle in her arm? She doesn’t have anything to prove. But when the time came for her to give blood, she gladly, if reluctantly, offered up her vein.
Sibling rivalry erupted.
After Blakely realized she would survive the needle, she became insistent that SHE be the donor for Harrison’s eventual transplant. Lachlan countered with his own insistence. It was a mixed blessing to hear my kids fighting… over who would offer the chance at life to their brother. I was upset that he would need this terrible procedure, but delighted that my other children both were hoping they would be “the match.”
Dr. Weston made a prediction: Lachlan would be the match. Blakely decided she didn’t like Dr. Weston any longer!
We got the results: neither of Harrison’s siblings were a match.
No one could believe it. There is a 1 in 4 chance of a sibling being a bone marrow match, and Harrison has TWO siblings. We were all disappointed, none more than Lachlan and Blakely. I proud that they were upset. They are willing to do anything to help their brother.
So where are we on a transplant? Dr. Weston said that without a family member match the transplant option moves “back a few steps.” In other words, if the current treatment stops working, we’ll try something else before moving to a transplant. Had there been a family match, a transplant would have happened more quickly in the process. Non-family match transplants are much riskier, apparently, than family match transplants.
Of course, if the current treatment course works, we won’t need a transplant. Unfortunately, a family match transplant is a weapon, and a quite effective weapon at that, we no longer have in the arsenal.
So we continue to pray that God provides healing through the protocol we are on without requiring the more risky transplant option.
As you pray for Harrison, one major concern right now–in addition to healing from cancer–is protection from seasonal viruses and infections. The flu is deadly for leukemia patients, especially with blood counts as low as Harrison’s are at the moment. An epidemic of norovirus is also being reported in the triangle. This virus spreads very quickly and easily. Please pray that Lachlan and Blakely don’t bring it home from school and that Harrison avoids any other infections as well. This stage of treatment will keep his numbers at some of the lowest of the entire treatment protocol.
We continue to remember the promise of Psalm 126, that those who go out with weeping return with shouts of joy. The Lord has done great things for Harrison in Jesus Christ, and we find our refuge in our kind God.
I found these various facts online (I’m driving myself mad reading all that is available), and thought it might give some perspective:
* Childhood cancers are the #1 disease killer of children.
* One in every 330 children will develop cancer before the age of 19.
* One out of every five children diagnosed with cancer dies.
* Common cancer symptoms in children — fever, swollen glands, anemia, bruises and infection — are often suspected to be, and at the early stages are treated as, other childhood illnesses.
* Three out of every five children diagnosed with cancer suffer from long-term or late onset side effects.
* When cancer strikes children and young adults it affects them differently than it would an adult – the treatments (chemo, radiation) impact puberty, learning, development, and as a result have greater long-term affects.
* Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis.
* Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
* The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).
* Nationally, childhood cancer is 20 times more prevalent than pediatric AIDS yet pediatric AIDS receives FOUR TIMES the funding that childhood cancer receives.
* On average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
* On average, one in every four elementary schools has a child with cancer.
* On average, every high school in America has two students who are a current or former cancer patient.
* In the U.S., about 46 children and adolescents are diagnosed with cancer every single school day. That’s about the equivalent of two entire classrooms.
* While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
* Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia , and relapsed non-Hodgkin’s lymphoma.
This morning was a “sedation” day, meaning that Harrison would be sedated for a spinal tap. Dr. Weston did a lumbar puncture and pushed a chemo drug known as methaltrexate. Harrison also got a dose of cytarabine. While there is no sign of leukemia in Harrison’s spinal fluid, researchers have discovered that leukemia cells love to hide out in the central nervous system (CNS). In the past, before treating the CNS, kids would come out of remission quite quickly after induction when the cells in the CNS began to reproduce. The chemo in the spine is both to prevent the spread of leukemia to the brain and to prevent a relapse in the event some cells slipped in. Unfortunately for Harrison, due to his stroke there most certainly was some leukemia passed to the brain.
There are several blood count numbers that the doctor tests each week. The results of these tests determine the level of medication given. For example, if the white blood cell count is too low, then Harrison might take a lower dosage of a particular drug. Once the numbers return to a safe level, the chemo dosage rises.
One number chemo patients always look for is the ANC, Absolute Neutrophil Count. Neutrophils are the cells that fight infection. A count of less that 500 (written as .5) is dangerous, and means the patient is neutropinic, and really should not be around other people.
The chemo kills both good and bad cells, so low numbers are to be expected. But the treatment must be managed to ensure the body can produce enough good cells to get the numbers back in order. If the numbers do not bounce back, then something isn’t going right.
At the clinic visit today here were Harrison’s numbers:
Hemoglobin: 9.1 (normal is 11.5-15.5 – less than 8 requires a blood transfusion)
Platelets: 249 (normal is 150-440 – this is a great number)
ANC: .5 (normal is 2.0-7.5)
While Harrison is neutropenic, these numbers look really good according to Dr. Weston.
It is easy to forget that “remission” does not mean “cured.” Harrison is not cancer-free yet, but he is one small step closer. Without the ongoing treatment he’s receiving, the leukemia would again ravage his body.
After hearing the news that we would move into the “consolidation” phase of his five-phase, three-year protocol of treatments we were, of course, delighted. When the weekend came around, Harrison was feeling great. Apparently his blood numbers must be high, otherwise he wouldn’t have the energy he’s had. The chemo will knock those numbers down as it kills off both good and bad cells. With leukemia treatment, in order to eradicate the leukemia cells one must also knock off many of the good cells. War is hell, they say, and war with childhood cancer is no different.
Friday night Harrison was determined to go the varsity basketball games (girls and boys) at his school, North Raleigh Christian Academy. We agreed to go for the second half of the girl’s game and the first half of the boy’s. We felt like his energy level indicated decent numbers, at least. I should not have been surprised that Harrison immediately connected with his friends and was nowhere to be seen for either game. Fortunately, Blakely and her friends kept a close eye on him. He had a blast!
Harrison and Blakely at the NRCA basketball game.
Saturday morning he woke up ready for a good day. Lachlan’s baseball team has workouts each week at an indoor facility, and Harrison, like every year previous, thinks he belongs with the varsity players at practice. He’s always been a hit with those guys, even more now. He showed up like usual, baseball equipment in tow, ready for cuts in the batting cage. Although the prednisone has done a real number on his legs, combining with the vincristine to weaken them, he was able to step in and show the older guys how it’s done! He loves the new bat he got for Christmas.
One of Lachlan’s best friends, Jansen Kidd, had his annual “Ice Bowl” birthday party in the afternoon. Jansen, the young man who has offered to have his bone marrow tested in the event a transplant is needed, invited Harrison to come as well. As soon as I left baseball with Harrison, he started pestering me to take him to the party. I felt like he needed some rest, but he insisted.
Harrison jumped right into the middle of the action; he was determined to play some football. While running is basically impossible for his little legs right now, he didn’t let that stop him. Even when he stumbled and fell, he just got up and went back to jogging. He even threw for a touchdown. I told him that was more than his new prayer-partner, Peyton Manning, threw this season. He just laughed and acted as if to say, “That’s how I roll.”
Harrison has always been low-key about his athleticism. When he would complete a pass, run for a touchdown, or make an exceptional play at shortstop, he just acted like it was nothing for him. No need to jump around and draw attention to yourself, just let your playing speak for itself. Made me proud.
On Sunday, we intended to keep Harrison home from worship. I don’t know why, other than keeping him from germs. But he woke up and really wanted to go. Since he felt good, we agreed that he could go with us. We all love worshiping our Triune God with our church. Although I have not been preaching for the past few weeks, we still want, and need, the authentic Christian community that New Covenant Fellowship provides. I don’t know how people that don’t know Christ and his people survive these sorts of crises.
Sunday afternoon was quiet. No football to watch (the Pro Bowl is certainly not football worth watching), so we spent some time reading, playing games, putting together a puzzle, and resting. It was a fitting end to a remarkably busy weekend.
As the week begins, we remember that Harrison is fighting against a life-threatening disease, one which a few weeks ago nearly claimed his life. It is hard to believe that one month ago today the little man had a stroke that caused the ER doctor at WakeMed to give us no hope for his survival. Today should be a good day for Harrison. He’ll do some school work, take a boat-load of pills, and prepare for chemo tomorrow. If all goes as planned, his blood count numbers will begin to drop as the meds continue killing leukemia cells.
In addition to praying for his continued remission, you can also pray for his appointment with the neurologist tomorrow afternoon. Obviously, he’d like to drop some of the anti-seizure medication. But we want to make sure he is improving significantly enough that he will not begin having seizures again. Additionally, and really more importantly, pray that the two blood clots that remain in his brain, which caused the stoke a month ago, would dissolve rapidly and no long present a treat to his life. Harrison has not had any nausea yet, but that could change with the continued escalation of chemo.
Your prayers, cards, emails, and gifts have meant the world to us. If we haven’t expressed our gratitude yet to you personally and individually, please do not interpret that as ingratitude. The outpouring of support has simply overwhelmed us.
