After being ill all November and being turned away by 3 different physicians, stating his swollen eye was allergies, cold/flu symptoms, that his rash was fifth disease and his prolonged fever of more than 6 days were flu and fifth disease related. I knew it was more than a virus so I took Christian to the hospital where he was primarily diagnosed with Kawasaki disease (a disease commonly misdiagnosed for HLH). After 2 IVIG treatments his fevers weren't breaking but doctors were noticing his levels were increasing by thousands. On December 7, 2018 he had his first bone marrow aspiration to rule out leukemia, he came back negative but his hematologist said he had 6 out of the 8 symptoms for HLH and due to it being so rare he needed to be treated as if he had it for the sake of saving his life so that night our sweet boy began chemotherapy, high dose steroids and retuximab which was for his Epstein-Barr Virus that was extremely elevated. He responded so well, fever finally broke and his rash was gone. Our son responded so well he went into remission in March but unfortunately his EBV levels weren't going down like they would have expected, they recommended a bone marrow transplant, in April we met with the BMT physician from Texas Children's Hospital in Houston, Tx. She said it would take at least 2 months to find a donor but that a transplant was necessary due to the fact that his EBV could trigger his HLH again and possibly be worse. Of course we agreed to it, we wanted our sweet boy to live.
Mid-April our son was granted a Disney trip with Make A Wish and we also were told they had found a donor and needed to be in Houston in May. So as soon as we landed back home we drove to Houston the following morning and my sweet boy and I stayed. May 15th, they began his "conditioning" to prep him for his transplant date May 30th and on that day he did well, a few complications but they were controlling his viruses with medications, so they thought. June 29th, it was brought to my attention that his EBV was still in his system but that they were waiting for his new cells to kick in and attack the EBV, his Adenovirus and enterovirus. July 2nd came and our sweet boy was able to leave and come back 3 times a week as an outpatient, he was so happy and I was even happier to finally sleep in a bed with him with no machines beeping or nurses coming in and out.
Unfortunately his discharge was short lived, July 7th his belly distended so much it worried me so I took him into the ER to get him checked out and he came back positive with a very resilient UTI, one that needed to be given a very special antibiotic and a few days later his stool culture came back positive for C Diff, a bacteria we all have but can be very dangerous for someone who's immune system is compromised like Christian's was. His infectious disease doctors were able to give him a medication to help him out but our sweet boy's belly wasn't getting any smaller, our son needed a colonoscopy to do a biopsy of his intestines to rule out GVHD, a few days to almost a week later our son began having very bloody stools, platelet transfusions began to become a daily transfusion until he began bleeding bright red again that's where they decided to do another colonoscopy, his biopsy sites were bleeding. They were able to fix them but they didn't last long and we noticed a lump behind his left ear and 2 under his armpit, they did a biopsy on the one under his armpit and by then I had done my research and everything I read wasn't good, I spoke to my husband about what I read and how our son was showing signs of being tired because by that time he was pushing, hitting and yelling at staff to not touch him. He had always been so compliant and after all he had been put through I understood my sweet boy was tired, his belly was becoming painful and nothing was helping.
Once we received the results from the biopsy which came back as PTLD Lymphoma, I knew there wouldn't be any options and if there was it'd be risky, they gave us 3 options, 1. Do nothing 2. Attempt attacking the Lymphoma aggressively but risk his quality of life by intubation, dialysis, basically put him through hell and for him to not make it out alive either way 3. Give him a milder chemo and begin steroids.. We wanted our son to go down fighting if need be so we chose option 3.. 4 days later we get told the chemo did nothing and in those 4 days our son was placed on oxygen and his oxygen levels was decreasing even while he was awake, they told us he had a few days to maybe a week but didn't have much time left. So we decided to keep him as comfortable as possible, he still complained about pain in his belly so they increased his pain medication, 3 days later our son began to show signs of being close to his time so we held and kissed on him a little longer every chance we got, he would wake up and ask for soup and milk until his medication was increased to the point where he slept and he held on as much as could and as he did that I held and sang told him it was ok to let go to go be with Jesus and I promised to see him soon. August 16, 2019 our son held the hand of God as they both walked into heaven.
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