I sat by the foot of our child’s bed in the hospital. As I was praying, God helped me realize this was a new fear; something I’d never had to give him, because it had never entered my realm of reality. We’ve been to the ER plenty of times for Whitaker. I have often laughed that he’s our child that’s been stapled, stitched, glued, and butterfly stripped together. We’ve even had x-rays. I thought I finally entered the true boy mom phase of “walk it off.” Trust me I tried. Whit ran an unexplained fever for a week in January. No one else got sick. He complained of shoulder pain and we wrestled via text with our amazing Dr. friend, as to whether this illness was viral or did we need to make the 6 hour drive to town for assessment. In the end the fever vanished on the 6th day and the shoulder pain disappeared with the fever. We chalked it up as a virus and bumping his shoulder wrong and not remembering. We “walked it off.” Until last Sunday. We’d just rolled in from our bumpy 6 hour drive from town the afternoon before and gotten unloaded. He woke up Sunday morning whiny about walking over the river and up the mountain in the heat to worship. To be honest, I got it, I remember being 8 and tired…but I gave him breakfast and a pep talk. By three-quarters of the way through the walk I realized he wasn’t feeling well; but it was a longer walk back than we had left to go; so I compromised and carried him, and off we went. At church he started itching. Before the sermon finished he had hives on his wrists, torso, face, ears, neck and in his hair. I took him outside to check him, photograph for the doctor’s documentation, and to give benadryl. I prayed hard against whatever this was. I messaged the doctor when we got home and fed him lunch. Had anyone else had similar symptoms? He hadn’t eaten anything new in almost 2 days and even then it would have been a developed intolerance from shrimp, his favorite in-town treat. Could he have bedbugs? We’d been traveling. He slept under a mosquito net. None of the rest of us had a single bite. I yanked off all the covers and linens and Justin took everything into the strong sun including the mattress Yet, it didn’t get better and he had a fever. How soon do we load up and go back to town? Surely I was overreacting and we should “walk this off”? The fever persisted beyond the itchy hives that stopped on Tuesday. On Wednesday we prayed and we talked and I cried and we agreed to travel on Thursday for lab work if he wasn’t fever free. Occasionally the fever had disappeared, only to return within a few hours. Late Wednesday night, I’d lived in maybe as long as my momma heart could. I packed our family and shared our fresh produce with the neighbors and we made plans to travel the next morning. On the way we delivered two neighborhood fathers and their sick kids to the clinic for checkups. The Lord was watching over us.
6 hours to town, straight to the hospital for lab work and samples. We let him pick the restaurant after the needle-sticks, since those aren’t his favorite thing. He ordered the shrimp…at least this time I was watching for hives…they never came. He learned to give a stool sample, and Friday morning we went back to the hospital to drop it off. We met with a new doctor who sent Whit for shoulder x-rays with Dad while Fi and I ran around trying to track down printed copies of the lab results. Then we started assessing results while we waited on the doctor. Sometimes Google isn’t your friend. We heard things like “more tests” and scary words like “cancer,” ”tick borne illnesses,” and “tropical diseases.” Some of the tests they couldn’t do on site in Tanzania, but we knew our friends at the African Inland Church Hospital in Kijabe, Kenya could. The doctors were wonderful and communicated by phone, we gathered the documents from all our tests, packed in haste, and headed 6 more hours to Kijabe, Kenya late on Friday afternoon. The Lord was watching over us.
Friends prepared groceries and even prepped meals for our arrival. They coordinated a playdate for Fi so she didn’t have to suffer another day of waiting in the the emergency room. A wonderful medical team who had already reviewed our data and decided on a course of action met us Saturday morning and we inserted an IV cannula to draw blood and so that we could insert IV antibiotics, if the new tests said we needed them. The Lord was watching over us. We talked through possible tests to add and our history. They examined Whit and we waited. By afternoon we knew our blood numbers were still scary low. Our doctor explained the treatment course to Whit and to us. They would admit us, put us in an isolated room, and start us on IV antibiotics. We will continue to keep seeking God’s healing and intervention and Tuesday they would run more tests. By Wednesday or Thursday we hoped to have some answers; but even then it’s a matter of trusting in God.
On Thursday they confirmed that they thought Whitaker had Lymphoma and that we were looking at a long term treatment plan of several months to a year or more. Several treatments for childhood cancer are only avaliable in the USA. We consulted with our medical team and our insurance company and began the long process of coming home to NC for care. We started the conversation on Thursday and Sunday night a medical team traveled to Whitaker and we began the journey by ambulance to be medically evacuated to the USA. HIs blood numbers were too low to make a commerical flight safely possible with his compromised immune system. The paramedic and emergency physician traveled with Whitaker each step of the way from the hospital in Kenya to a medical flight from Nairobi, Kenya to Cario, Egypt, to Germany, to Newfoundland to Raleigh, to the door of Duke Hospital in Durham, NC and through our ER admittance. The team who had pre-reviewed his file met us immediately and began assessment and diagnostic treatments. It's been a week filled with tests and learning.
Today, Whitaker's diagnosis was finalized. Whitaker has been diagnosed with B Acute Lymphoblastic Leukemia (ALL). It's the most common type of childhood leukemia. It's completely treatable. It's curable. We'll go through three phases of treatment. Phase One is an intensive month of treatment which will start with 8-10 days in the hospital and involve 5 different medications. This is standard procedure for B Acute Lymphoblastic Leukemia and the treatment would be the same anywhere in the country (and lots of places around the world). After our 8-10 days our medical team will evaluate and let us know if we are able to head back to Rowan County and transition to once or twice a week trips for treatment. After we finish that Phase we'll move into Phase 2 and come in for treatment every week/every other week for 6 months. Once we've completed our 6 months our medical team will evaluate and we'll move into Phase 3 and do clinic visits and have checks once a month for probably 2 and a half more years.
What I've just outline are not absolutes. They are current tentative medical plans. We're continuing to pray and trust God for Whitaker's healing. We're taking it one day at a time and are praising God for the medical team he put in place and the amazing opportunities to witness the way Jesus is working in our lives and the lives of those around us.
"Ascribe to the LORD, O families of the peoples, ascribe to the LORD glory and strength! Ascribe to the LORD the glory due his name; bring an offering and come before him! Worship the LORD in the splendor of holiness; tremble before him, all the earth; yes, the world is established; it shall never be moved.
Let the heavens be glad, let the earth rejoice, and let them say among the nations, 'The LORD reigns!' Let the sea roar, and all that fills it; let the field exult, and everything in it! Then shall the trees of the forest sing for joy before the Lord, for he comes to judge the earth.
Oh give thanks to the LORD, for he is good; for his steadfast love endures forever! Say also: 'Save us, O God of our salvation, and gather and deliver us from among the nations, that we may give thanks to your holy name, and glory in your praise. Blessed be the LORD, the God of Israel,from everlasting to everlasting.' Then all the people said, 'Amen!' and praised the LORD." 1 Chronicles 16: 28-36
This week we went into Whitaker's appointment prepared for them to access his port-a-cath; but the nurse explained that they don't access his port for blood labs since it would be an increased risk for infection. Whitaker said, "That's Great! Mom, can you call Fi so she can fill up the wading pool? I can swim!"
He bravely gave the nurse his arm for "freezy spray" and chattered away about his pet crawdad, Crawler, the fish, and the dogs while his nurse told him about her son's pet red-eared slider turtles, her dogs, and her cat.
His doctor came in to tell us his blood counts are trending up, (That's exactly what they want them to do)!!
She celebrated with us that God has allowed amazing healing in his fingers and toes in the past month! Praise God she shared that Whitaker's liver numbers are also greatly improved this month! She cleared Whitaker to be able to have his port removed, (we're scheduled for surgery on Monday, June 28th)! It's a huge step because it will be our last scheduled fasting and sedation! It also greatly decreases his risk of infection and means no more trips to the ER for low grade fevers!
His face, toes, ears, and fingers are still covered in a rash they call chemo rash. His doctor says that is very normal and it just takes time. Whitaker strongly dislikes it because it's quite itchy and people tend to comment on it. We're just praising God we don't have to take more medicine and we continue to wait for the medicines to cycle out of his body. His doctor said that normally takes about 6 months. They'll continue to monitor his liver enzymes until they are normal. They allowed us to cancel his upcoming endocrinology appointment since they said he no longer needed it!!!
Thank you for faithfully praying with us. Please join us in prayer that Whit will continue to rely on God and trust in his provision for his day to day needs. Pray for perseverance as he continues to be more active and do things he physically hasn't been able to. Pray for his emotions as we prepare to move to a new house in DC and as we get ready for an in-person school year. Pray for wisdom as we adjust to a new normal.
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