The following is a running diary of a major trial for my son David.
It's difficult to get the exact timing of everything, but it pretty much started two months ago (May 2024?). It had only been a couple weeks after his post-op recovery from an operation on his esophagus for a rare condition known as achalasia (inability to get food or liquid to his stomach). All seemed to be well for a while and then he developed edema (swelling and fluid build up) in his legs. The swelling was so bad, it was causing him pain. I took him to our doctor who prescribed a diuretic to help drain the accumulated fluid.
This continued and then David began to become anemic and lethargic. We were wondering if there was some kind of inflammation in his veins causing his heart to work harder to get blood through. A blood test had our doctor confused. The readings showed that all his organs were working fine.
David was getting weaker. At first he could walk quite a ways, then only around our street circle until he got winded and needed to stop. Then, even worse, he could not walk across the yard. He needed to move to relieve his edema. After another blood test and urine test, there were hints that he was suffering from Hepatitis A. This was good news because 1. we know what it is and 2. the body will deal with it.
My doctor urged me to admit him to Loma Linda University (LLU) Emergency, but David does not have insurance, so all tests and procedures are out of pocket. If, indeed, it was HepA, then recovery is all on his antibodies— right? Well, David was sinking even lower. He could not stand and was throwing up. In the process of needing to vomit, he fell out of his bed and couldn't get up. Neither Julie or I were available to help him. I was in transit from Glendale via my work.
I was strongly urged by my doctor to get him to LLU Emergency because his latest readings did not confirm HepA, even though all the symptoms were there. OK, time for the big guns. Julie and I poured David into the car and I took him to LLU Emergency. I was met there with a HUGE line of the sick and injured. I was almost positive I was looking at a 6-9 hour wait.
After checking David in, we were placed in a waiting area for vitals to be taken. They drew some blood and the attendant was not pleased with the thin look of David's blood. A doctor showed up asking questions. She then said that we were being ushered to an emergency room bed. In other words, we were at an emergency level to bypass the entire line of people.
Normal hemoglobin levels is around a 13. If you have a level of around 6-7, they give a transfusion to get the red blood cell level up. David was at 2!! I later heard from a blood doctor that he had never seen a patient with a hemoglobin level that low. His organs were being starved of oxygen and his heart was beating hard to compensate. Another blood doctor came in and said that he had never seen anyone with a level of 2... because they all died.
God had miraculously protected David, for which we are eternally grateful. God graciously gave him an extra grace to save his life at a hemoglobin level of 2. A severe reading that allowed us to jump ahead in the very long line.
They inserted two IV tubes to continually draw blood for testing. This was fine with David even though he has real trouble with needles. They took his blood and tested for any conflict with the blood they were going to give him. There was not a negative reaction so they gave him one unit (one pint) of blood to see if he would develop heavy breathing or a rash. He did not react, so they gave him a second. Within minutes he began to become more alert and less lethargic.
They moved him to the ICU and began a battery of tests including a CAT scan, an ultrasound, and a battery of tests (60 at last count). We had returned home at 3:30 AM.
By the next day, they had given him 3 more units of blood (five pints total). As of the most recent count, his hemoglobin was now 8, which is wonderful news. However, it remains to be seen if his bone marrow has shut down in the creation of red blood cells. Monday is scheduled a bone marrow biopsy, which is an uncomfortable sampling from the hip. We may be looking at Aplastic Anemia.
Mind you, the doctors are all puzzled. Physicians have come in and confessed that they really do not know what is going on. Previous blood tests showed no issues with the hemoglobin levels. Then, gradually, it began becoming an issue.What caused the sudden drop in red blood cells? And where did the bad cells go? There was no blood in his urine, no blood in his vomit, and no blood in his stool.
As of tonight, David is gingerly walking and (thankfully) going to the bathroom. He is eating and has been moved to regular room.
The doctors are still unclear what caused the sudden drop. Tomorrow (Monday) David is going to have a marrow biopsy to confirm or rule out Cancer. There is also a virus that he was tested for called the Parvovirus. However, this test takes 5-days to confirm. Everyone is hoping it IS the Parvovirus because it can be treated. Pray that it is the Parvovirus and NOT Cancer!
Mon, June 3 - Today was the day of David's bone marrow biopsy. Julie could not stay, so I did in order to hold his hand and pray. As much local anesthesia they use (three shots and a bone shot), the pain is still excruciating. A large needle is inserted 3-different times, and then a marrow extraction. David, who has a low threshold for pain, screamed in his pillow. The good news is that they extracted a good sample of marrow to analyse. All the while I was praying him through it, I thought of the Father watching His Son have nails pierce His hands and rubbing His scarred back against a cross.
Yet it pleased the Lord to bruise Him...when You make His soul an offering for sin... - Isaiah 53:10
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David is home! Now waiting for results. Pray for perfect marrow!
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Thurs, June 6 - As of today we have begun the waiting game to find out the results of David's bone marrow biopsy. Pastor Jack, in last night's study, talked about when he was a flight student attempting to land on a runway that had a hole in the tarmac. He sought to avoid it, but continually hit it after numerous attempts. The instructor asked, "How many times are you going to hit that hole?" He then told Jack to stop focusing on the hole and just look 30-feet ahead of it. He nailed the landing without hitting the hole.
This made me recall the disciples all fearing for their lives in a boat during a severe storm on the Sea of Galilee. Jesus came walking on the water. When given the go-ahead, Peter walked on the water to meet Jesus. When he began to focus on the waves that threatened around him, he began to sink.
The lesson? Keep your eyes on Jesus and not the surrounding threat. Waiting for the results of the biopsy is like the threatening waves of the sea. There is a temptation to wake Jesus and accuse with "Teacher, don't you care that we are perishing!?" No! Rather, the Lord has bid me to walk upon the water to meet him. My main focus (and covet your prayers accordingly) is to keep my eyes on Jesus and not the diagnosis results.
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Sat, June 8th - I went to be of comfort to Pastor Rea (Packinghouse Calvary Chapel in Redlands) for the graduation of his wife, Raelynn, into eternity from cancer. Meeting up with Pastor Ed, I told him how much the memorial service was to me seeing that this coming Wednesday we will learn the results of David's bone marrow biopsy. Instead of me ministering to him, Ed immediately switch the tables and gave me the skinny on who the best oncologist was in Redlands. He also gave some hard-learned tips on finding specifics regarding which cancer and best treatments. I was puzzled and queried, "I thought Loma Linda was the top tier for cancer treatment?" Pastor Ed replied, "You'd think that, but City of Hope in Duarte is..." It will be good to have a second opinion on hand. Keep praying for Wednesday's results.
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Just came back from the oncologist... Good news is, NO evidence of acute leukemia, lymphoma, or metastatic malignancy. Those were the biggies. The doctor wants to make sure there is no cancer hiding in the lungs, so he ordered a PET scan. There is a possibility that it is red cell aplasia or an auto immune disease. Blood was drawn to see what changes have taken place since previous draw. When the doctor asked how he was feeling, David replied, "Fine, as if all this never happened." All of your prayers are being heard, but our trial has not officially ended yet.
The doctor just called and the latest blood draw shows that his red blood cells are down a point (down to 7) and David will need another blood transfusion to get his count above 8. However, the good news is that his liver is OK. Whew!!
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Wed, June 12th - Spent today at LLU Clinic in Beaumont for David to receive another 2-units of blood to raise his hemoglobin level that dipped down to 7. That makes a total of 7 units. Seven is the number of completion, so I pray this will complete his need for any more transfusions. The first nurse to insert the needle could not find a suitable vein. She explored with the needle which caused extreme pain for David who tensed up, thus constricting the vein she was looking for. She gave up and I became dizzy, and nauseas. I am not squeamish at blood or needles, but hearing my son in pain caused my blood to drain from my brain. I had to lay down for a few minutes. As I lay there recovering, a male nurse came in and tried the other arm and it was over in just a few seconds. Total time here... 6-hours. Here is a shot of David enjoying some Hawaiian Ono Teriyaki Chicken.
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Fri, June 28th - Took David this morning to have his blood drawn and tested. We all prayed that the blood draw would be quick and not traumatic as others had been. Prayer answer, bang zoom, we were done in minutes. Now, his last transfusion (above) got his red cell count from 7.0 to 9.9. The reading we get today will determine whether or not his bone marrow is producing the necessary blood. (we lose a degree of red blood cells, normally.) If it has dropped back to 7 or below, he would have to have another transfusion with the bad news being his marrow is not reproducing blood. Mind you, I have been focusing our prayer chains on David's marrow and zero damage to his organs. I got a very joyous call from Julie while at work this afternoon. His hemoglobin was 9.8!! Though I was focusing on 10 or above, a loss of only a tenth of a point means his marrow is reproducing! He is doing so well, Julie is going to seek to have the PET scan canceled until further notice. She would rather he not have to ingest anything radioactive if not completely necessary.
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Tue, July 9th - Post PET scan, we believe we have a diagnosis. I will try to simplify this very rare condition. Before we are born, while in development and into childhood, we have what is called a Thymus. This organ produces and "teaches" T-cells in support of our immune system. When we reach puberty, the job of the Thymus is done and begins to shrivel up and is replaced with fat. It is located just behind the sternum of our chest. David's Thymus never shriveled up, has become a benign tumor, and is the cause of red cell aplasia—a condition where red blood cells are not being produced in the marrow. So, what now? We are to continue to have David's blood drawn every Friday to make sure he doesn't need another transfusion. The last hemoglobin count was down from 9.8 to 8.3. If he is down to 7 or below, he will need another transfusion. His Thymus condition is being sent to a "tumor board" where all these specialists give their assessment on how to proceed.* Pray for wisdom for the tumor board to make the absolute best treatment and that doing so will not hinder his immune system. Pray for wisdom on our part as well, this is totally uncharted territory for us.
* The Tumor Board is a "meeting of the minds" where physicians from many specialties present their latest cases and basically get and share advice regarding tumors and the best treatment for each. Oncology, Hematology, and doctors from many fields look at all the information and make recommendations.
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Just had a meeting with a Loma Linda specialist and he was not convinced that the thymus is the direct culprit to David’s lack of red blood cell production. As I write this, he is getting blood drawn for a series of lab tests. If they prove inconclusive, he will need to have a surgical biopsy done.
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The PET scan had narrowed down the "thymus" (see above update) as the possible cause of David's red cell aplasia. The tests given to him were to rule out any other possibilities because removing the thymus is tricky, it being so close to the heart.
As detailed in the red text prayer above, we are praying for a safe and perfect operation. But mostly, that this was the cause of David's red cell drops (the doctors are giving it a 50-50 chance of helping, but prayer can supersede these odds). Prayer has been helping. We had some amazing news in his last hemoglobin test. When he received his last transfusion, his count was around 9, which is normal after a transfusion. However, his
next blood cell count, a week later, measured 10!! This was huge in that God kicked his marrow and T-cells into gear to begin red cell production again! At first I wanted to put the surgery on hold, but the oncologist and such urged us to continue going forward. We are trusting in the Lord in all this. After all, when wanting to move out of SoCal, God told us to stay put. And because of that, we were an hour away from the uber-specialist in operating on David's esophagus, and now, less than 15-minutes away from
another specialist in thymus removal! God be praise... always!
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As of Friday the 13th, 10am, David is out of surgery. Surgeon said all went well, but the thymus was larger than they expected. This hints to me that it’s been the cause of his reoccurring red blood cell count drops, but still, keep that at the top of your prayer list for him as well as the thymus being benign. Prayer for ease of recovery as well. Thank you all!!
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David is home! He went through a few painful moments, one he said was worse pain than the bone marrow aspiration! Now he is home, downing meds, not wanting to move much, but glad. Thank you for all your prayers! Pray now that this oversized thymus is benign and was the cause of his reoccurring red cell count drops. Thank you in advance!
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Praise update: David's recovery has been swift. The most pain after he was home was taking off the stupid bandage that seemed to be applied with epoxy! He has been eating well and is saving up his enthusiasm for his first Thanksgiving meal in years. The real answer to prayer is the thymus was benign and his latest X-rays gave an all-clear! Thank you all for praying. Now we need to pray that the thymus was the culprit in dropping his red blood count in the first place... ie no autoimmune issues.
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Yesterday (Oct. 1st), I had a meeting with his oncologist who wanted to see how David was doing, post-surgery. The most interesting part was the doctor and I being in agreement regarding David's red cell count levels. He noted that it was just a normal practice to give a transfusion if levels go to 7 or below. However, if David is not experiencing fatigue or dizziness, then perhaps he does not need a transfusion at 7? It seems as if David's body is not producing red blood cells because it is detecting enough every time he gets a transfusion. It concerns me that the rule "use it or lose it" will take effect. To combat this, we have decided to get David a transfusion IF he starts becoming fatigued.
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