Apr 17, 2017 Latest post:
Jun 15, 2018
On Sunday, April 9, 2017, Nicholas told us that his arm was hurting – it was a pain in his upper right arm in the bicep area. We looked at it – there were no signs of bruises, rashes, scratches, redness, or any marks. We asked him if he could recall if he had hit it or hurt it in any way in recent days. He said ‘no’; We thought it might be the muscle, possibly a muscle strain. We applied some medicated cream for muscle pulls and strains. On Monday, we looked at it as he said it still bothered him. Again, we figured it might be the muscle and that it may take a couple days to heal.
On Tuesday, April 11, 2017, Nicholas was at school and could not tolerate the pain that he was feeling in his right arm any longer. He went to the nurse’s office for her to examine it to see if she could see what the problem might be. The nurse could not identify anything, as well. She called Jane and suggested it may be a hairline fracture and it might be best to go get an x-ray.
Jane picked up Nicholas around 10:00am and brought him to his pediatrician, Dr. Sussman. Dr. Sussman ordered two things: An x-ray & a blood test. He took the blood, but he took the blood twice, and he sent Jane to take Nicholas for the x-ray. When they returned with the x-ray results, Dr. Sussman confirmed that his arm did not have a fracture, but he knew the blood test indicated something much more serious. He instructed Jane to take Nicholas immediately to Shady Grove for another blood test. The analyzer in Dr. Sussman’s office could not report the White Blood Cell (WBC) count b/c it was so out of range. When Jane arrived at Shady Grove, they took Nicholas immediately b/c Dr. Sussman had called ahead and expressed the urgency of getting this blood test completed. In a very short time, the results were confirmed. Nicholas’ WBC count was over 289,000. Jane was pulled aside and was told that Nicholas most likely had Leukemia and that they were going to transport him to Children’s Hospital in Washington DC. Dr. Sussman arrived to see Nicholas, and as Dr. Sussman continued to talk to us in private, he was talking as if this was a forgone conclusion. We stopped him and asked him if we were going to Children’s for further testing to see if Nicholas had Leukemia – his response was, ‘No, Nicholas needs to be tested to see what type of leukemia he has’. We cannot tell you the shock of hearing this at this moment in time. We decided we would not say anything to Nicholas until the tests were re-confirmed at Children’s and until we have heard what the doctors would tell us once we got there. But the bottom line is that this count only indicated one diagnosis: Leukemia. It’s not an infection or anything else - A count this high has no other diagnosis. So I drove to Children’s National Medical Center in Washington, DC. Nicholas was medevac’d with Jane to Children’s in about ten minutes, once the helicopter took off from Shady Grove.
When Nicholas arrived at Children’s, he was placed in a room in the ER per their protocol. Tests were run immediately and it was a waiting game. When I finally arrived, Nicholas was settled in the ER while filled with great anxiety. Cousin Laura, and later on, Mark, were with us providing Nicholas (and Jane and me) support through this extremely difficult time. After some time, a resident doctor pulled Jane and me out of the room to tell us that the blood results confirmed the findings at Shady Grove and that Nicholas indeed had Leukemia. The doctor explained that Nicholas was going to be admitted as soon as the Hematologist doctor arrived to review and sign off on the results. Still, at this time, we waited for the Hematologist to speak to us before saying anything to Nicholas.
Once the Hematologist (Dr. Amy) arrived and spoke to us, we were faced with the reality of telling Nicholas that he had Leukemia. Dr. Amy was limited in the amount of info as plenty more analysis had to be done. She explained to us the diagnosis and the planned steps: Admit Nicholas, get an IV hooked-up to start getting him the fluids that he needs while beginning to flush his system of the uric acid that had started to build up b/c of what the Leukemia had started to produce in his body, and start to prepare his body for whatever treatment lied ahead. She also informed us that Nicholas was going to need a Bone Marrow Aspiration and more-than-likely a Spinal Tap within the first 24 hours after we know the type of leukemia. Dr. Amy informed us that the team staff would likely inform us of the type of leukemia, the prognosis, and the treatment plan on Wednesday afternoon.
The next step that had to be taken was to tell Nicholas of his diagnosis. We could not imagine being 13 years old and being told that you have leukemia. It was the worst moment in Nicholas’ life, and our life. Somehow, Nicholas got through this moment. As parents, we were fortunate to have Dr. Amy with us as we told Nicholas this horrible news. We were further supported with love and compassion from Laura and Mark. Without them & Dr. Amy, I am not sure how Nicholas, nor Jane and I, would have gotten past this moment.
Now, we were just waiting for Nicholas to be admitted to Pediatric ICU. Late Tuesday, Nicholas was finally brought up to his room. The IV was attached with the fluid and meds that he needed to start getting his body responding to what the leukemia had already done and was currently doing to his body. Needless to say, it was a very difficult night. Looking at our son lying in this bed hooked up to all the equipment and trying to understand the agony that he was going through was the worst feeling a parent could ever imagine.
As Wednesday morning came, everything was stable. The fluid and the meds at this point were just starting and his body was responding as hoped. It was just a matter of waiting for the afternoon and when the team of doctors were ready to meet with us and detail us with what Nicholas would be facing. While we were waiting for the afternoon meeting, Father Lee Fangmeyer stopped by to see Nicholas. Fr. Lee's visit was such a blessing. Father was able to speak to Nicholas privately and he also anointed Nicholas with the Holy Oil - what a gift! Words cannot express our gratitude to Fr. Lee for making time to visit Nicholas and blessing him as he so did.
It was now just after 3pm - the team of doctors (including Dr. Amy) were ready to meet with us. Maria was also with us as her supervisor instructed her to leave work early and take whatever time off she needed to be with her family, so naturally, she came right to Children’s Hospital. Here is what we were told:
Nicholas has been diagnosed with CML (Chronic Myelogenous Leukemia). This type of leukemia is treatable with a treatment that research has proven to have a good to very good success rate. However, we were reminded that cancer is unpredictable and so much depends on Nicholas’ response/reaction to the treatment itself. As soon as we heard this, we knew that Nicholas had a chance which is what we so desperately needed to hear. We further were told two other positive things: 1) Nicholas would not need a Spinal Tap as CML does not require a Spinal Tap to be performed, and 2) the treatment Nicholas is to receive is an oral treatment – called Datatinib (SPRYCEL) - which meant he does not need to have a chemo-port placed in his body for the typical chemotherapy that many cancer patients must endure. While this information that we were told by the team of oncologists does give Nicholas a chance, we were told to remember that there are no guarantees in any cancer treatment. What we do know and have been told is that Nicholas has a long journey ahead of him and that he does have a chance to get control of his body and this disease. He may have to take a pill the rest of his life in the many years to come, but that should mean that he is winning the battle. He will need to come down to Children’s Hospital every week to get his blood count after he gets released from the hospital, but that will only happen when his WBC count gets to 100,000, down from the 289,000 that was the original count. He will have to have a Bone Marrow Aspiration performed once every three months in order to compare to his baseline that will be taken in just a day or two. While we all want to remain optimistic, the reality is that we need to proceed cautiously. Yes, they feel Nicholas has a good chance to respond to the treatment, and if he does, it is a long journey with peaks and valleys. The oral drug does not come without the tough side effects, as well, though certainly those side effects are more likely and more disabling with the typical chemo treatment that CML does not require. They remind us that Nicholas does have Leukemia – he will feel the effects of having this awful disease, but he has a chance. And as of this moment, we are thankful to God for his Mercy and Love that He has for Nicholas. While the application of science is going to try to heal Nicholas as much as it can of this disease, ultimately it is God’s Will that Nicholas will live-out. May it be God’s Will to lead Nicholas in his journey back to health that has now been placed upon him.
Please follow Nicholas in his journey in the days/years ahead.