Bad Blood

By: Debbra Chapman
Most mornings I would find my toddler’s face in pool of dried blood on his pillow. Clueless to what had happened through the night as there was no apparent accident. The blood would typically come from his nose and would be dry by morning. He was only 3 and slept in his toddler bed never really alerting us that there was ever an issue and if there was he would sleep right through it. Some mornings I would walk in to blood spatter on the wall.  This just didn’t seem right and I would be shocked. Our pediatrician summed it up as a blood vessel close to the surface because in the winter it’s more dry and it would cause a bloody nose.  It was suggested we boil some water or get a humidifier; we did both. As a first time mom, I accepted our pediatrician’s advice. When the summer months came, the house was no longer dry and the bleeding continued and even got worse. I had to advocate for my son because as his mother I no longer accepted dry air as an answer, so we went back to the doctor. At this visit, labs were ordered for Austin per my insistence as an overbearing mother. I was home from work with a sick kid, he had a fever, and the lymph nodes in his neck were swollen so large I could see them from across the room. I received a call from the pediatrician’s office; Austin’s labs came back with elevated white blood cell count and the testing was inconclusive. They were sending us to the cancer center. I was frozen in my tracks… the “C” word…cancer?? Not to alarm either of the boys, I held back the tears and replied with an “Ok”, but inside I remember being overwhelmed by fear as every negative scenario played over in my head. I watched my 3-year-old baby boy sleep every night until the appointment as I silently prayed over his peaceful, sleepy body. I prayed for God’s healing, for God’s intervention, I prayed that God take away whatever it was that was ailing my son. Silently to myself, as tears streamed down my face, I asked God to protect my son from the dreaded “C” word (John 14:13-14 – “And whatever you ask in My name, this I will do, so that the Father may be glorified in the Son. If you ask Me anything in My name, I will do it.).
Finally, appointment day came. Austin would occasionally ask “When will we be there?” from his booster seat. “Soon enough.” I would reply, trying my hardest not to shed tears. I was determined to be a positive influence for both of these boys, no matter what the outcome. We had to go to the lymphoma clinic (that word on its own scared the daylights out of me) into what seemed to be the appointment that lasted a lifetime. We met with multiple medical doctors: hematology (blood disorders), oncology (cancer specialist), genetics…I honestly cannot remember the list. Austin went through the full work up from all of the doctors, residents and medical students; he was a trooper. Multiple labs were drawn to be sent out to an external lab for further work-up and it would be at least 3 more weeks until we would hear anything….3 weeks? What were we supposed to do for 3 weeks?? In my head I heard “Wait on the Lord, pray, and then pray, and when you thought you couldn’t pray anymore, pray again.” I prayed for protection for Austin, for us and for his brother, but also for wisdom from the medical doctors and other experts. In the moment, that’s always easier said than done (Psalm 27:14 – “Wait for the Lord; Be strong and let your heart take courage; Yes, wait for the Lord.). I prayed for how we would handle anything they told us; first a diagnosis and then a treatment plan. I felt so overwhelmed. To pass the time I read. I read medical journals and articles, tips and wisdom from other parents, but most importantly my Bible. Reading my Bible brought me comfort and security when I felt like I couldn’t sleep or think. 1 Thessalonians tells us to pray without ceasing. Under all circumstances, pray continually… and considering we had 3 weeks, that’s really all we could do as I still had to report to work, function and parent.
Finally, we got a phone call. We needed to go back to discuss the findings of Austin’s lab results. Two more weeks ticked by. Again we waited. When we got to the clinic, I reminded myself “Be anxious for nothing.” The hematologist told to us that Austin did NOT have lymphoma, NO CANCER… being so relieved, I couldn’t hold back the tears anymore and let a few slip. Austin asked me “Why are you crying?” I told him, “These are tears of relief”. We did find however, that Austin had not one, but two very rare bleeding disorders. He didn’t have enough Ph factor (7) in his blood, and secondly the little factor he did have was low so his blood would not clot properly. His numbers weren’t considered hemophilia, and thankfully never got to that point. Both were classified as pediatric disorders, so by the time he reached 17 his blood would normalize. In the mean time we would have to monitor Austin’s bleeding; if he got into a major accident or needed any type of surgery he would need synthetic factor. We would continue to see hematology but not oncology.
When Austin was in middle school, we attended a high school football game. Another parent came rushing over to let me know my son was in the bathroom, and that he must have gotten into a fight and could be hurt because there was a lot of blood coming out of his nose and all over the place. I chuckled to myself, shrugged my shoulders and responded with “It happens. Austin has a bleeding disorder. He wasn’t in a fight”. She seemed stunned that I was so lighthearted about my child having a bleeding disorder that made the bathroom look like a crime scene. I told her I was thankful Austin had a bleeding disorder. She looked even more stunned.  I explained initially we thought he had lymphoma and although I’d love for him to be “normal” I’ll take the lesser of the two evils. She said “Well, that’s one way to look at it,” as though maybe I should be more upset about it. After the exchange I went to check on Austin. By now, he was quite used to taking care of these things himself.
Fast forward to high school. Austin played football in middle school, but high school was a bit different and his hematologist suggested he no longer play contact sports as there could be more potential for injury, so he decided not to play. Freshman year, while watching a Varsity game, he twisted his ankle and fell breaking his leg. Ironic since he didn’t want to injure himself playing but here we were with a broken leg anyhow. By the time I got there, the medical team was already attending to him. We went to the hospital where he received the synthetic factor to stop the bleeding and avoid further injury, Austin was nervous and wanted to be admitted and monitored, so as a compromise we stayed in emergency and were never admitted. Austin received half the regular dosage because he was a child (that half of the injection was $25,000).  Because we weren’t admitted, the procedure and the medication was not covered. (For those not up to speed on how medical insurances work, your insurance could be set up for both inpatient and outpatient coverages.  If and when you get the opportunity to become “inpatient” for any procedure (depending on your coverages), you may want to do so, because more than likely you will always have better coverage). Ultimately the insurance ended up covering the procedure and medication but the hematologist had to write multiple letters to the insurance company to justify medical necessity, so if you’re ever in this decision making position – know your coverages and if needed, make sure you’re admitted as an inpatient.
Later, Austin wanted nothing more than to be a United States Naval Officer after graduation. It fit perfectly into the future plans for his life. Other moms would ask me how I could be okay with this? To me it was simple, God spared him once and protected him, God will always protect him. All of our days are written in the Book of Life, so when it’s Austin’s time to return home to his Savior I know that he’s lived the life God predestined for him, and when it ends it ends, but I knew God would protect him to serve (Jeremiah 29:11 – “For I know the plans that I have for you,’ declares the Lord, ‘plans for prosperity and not for disaster, to give you a future and a hope.”).
After graduation, we received a denial letter in the mail.  Because of the pediatric bleeding disorder, Austin had “bad blood” reported in his medical records and upon review they denied his entry. Again, God protecting and re-directing Austin’s path for the life that’s meant for him (Proverbs 3:5 – “Trust in the Lord with all your heart and do not lean on your own understanding.”). However, Austin was not satisfied with this answer; he insisted he would be accepted to the Navy. Austin had his hematologist write an appeal letter to explain that his bleeding disorder was in full remission and if this was not ever documented as a medical diagnosis there would be no way to tell he ever had a bleeding disorder (PRAISE!!), which meant there should be no restriction for him to be accepted into the Navy. Austin re-applied, but still wasn’t accepted, so persistence did not pay-off for him (but you really can’t blame a kid for trying extra hard!).
I know that not all parents have such a beautiful ending to their story, and my heart breaks for them. I don’t mean to be selfish when I celebrate the end to what could have been a tragic story for us and if you are in the midst of your own cancer journey, my thoughts and prayers are with you. I am still eternally grateful that our son was “blessed” with a pediatric bleeding disorder, instead of any of the other circumstances I was imagining while we were waiting for answers. From that moment on, I knew God had important things in store for Austin and that God would always protect him. I continue to be humbled by God’s grace in our situation. Optimism is a state of mind. Instead of focusing on the negatives, I prefer to focus on the positives no matter the situation. Others may refer to it as “resilient” but truthfully I don’t feel resilient, I feel like God has promised me good even through the bad (Romans 8:28 – “And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.), so if I trust in Him I have no other way to look at it.
In conclusion, when our paths align with God’s plan for our life nothing can stop it, but when our plans don’t align with His, there is nothing we can do to force it, and that was my advice to my son. Advice and wisdom I learned from my own situations in life – when I tried to force round pegs into square holes. When you want something to be a certain way so badly and try to orchestrate everything yourself, you forget that no matter how hard we pound the pegs, sometimes they just won’t fit!
Proverbs 16:1-9
The plans of the heart belong to a person,
But the answer of the tongue is from the Lord.
All the ways of a person are clean in his own sight,
But the Lord examines the motives.
Commit your works to the Lord,
And your plans will be established.
The Lord has made everything for its own purpose,
Even the wicked for the day of evil.
Everyone who is proud in heart is an abomination to the Lord;
Be assured, he will not go unpunished.
By mercy and truth atonement is made for wrongdoing,
And by the fear of the Lord one keeps away from evil.
When a person’s ways are pleasing to the Lord,
He causes even his enemies to make peace with him.
Better is a little with righteousness
Than great income with injustice.
The mind of a person plans his way,
But the Lord directs his steps.


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About Debbra:
“I’m a child of the One true King who blessed me with the best earthly parents imaginable. I was saved when I was 8 years old through AWANA ministries, “Approved workman are not ashamed”…that ministry will always hold a special place in my heart. I am a devoted wife to the love of my life, kissed a few frogs once but they only lead me to my best life, and have given me a testimony that’s relatable to others. I’m a full-time working mama of 4 kids – 2 grown young adult men and 2 still at home, my step-son and toddler daughter. I have spent most of my adult life working at the University of Michigan for Michigan Medicine… I grew up there, so to speak, working in healthcare for the past 20 years!
I don’t have a redemption story in the same way you might hear about Peter or Paul or even doubting Thomas because never for one second have I ever doubted God’s Unconditional love, authority, or power. My story is about God’s grace, my mistakes, allowing Him and looking toward Him to help me heal. My life verse is Romans 8:28 – because it’s proven true over the years that God works all things for the good of those who love him, even our own mistakes!! He creates beauty from the ashes … and I am looking forward to sharing my stories and life lessons with you!”
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