Please help family of transplant,HLH,cancer child

Jonathan came into this world a fighter. He and his twin sister, Tzipporah, were born at 33, almost 34 weeks in July 2008. The entire time in utero, we had no idea he was sick. Jonathan, who was born first, was blue and limp. The doctors quickly whisked him off to NICU while fighting to get Tzipporah out fearing that she too was sick. Thankfully she wasn't and was eventually released to go home two weeks after birth. Jonathan stayed in the NICU for several days, all while doctors were performing test after test. They diagnosed him with pulmonary atresia, hyploplastic right ventricle, as well as several other heart defects. Jonathan was transferred to a children's hospital when he was five days old. The following day, he went to the OR to have a BT shunt performed. He coded the next morning and his chest had to be reopened for nearly a week. At that time, the doctors gave him a 40% chance of survival.  Over the course of the next few weeks,  Jonathan continued to deteriorate and had to be intubated. He had deteriorated so much that he was placed on a heart transplant list at the beginning of September. By the end of September he was offered a heart and was transferred to another children's hospital for the transplant. He was prepped for the transplant and was taken back to the OR. Just as they were about to open Jonathan, they had got a call stating that the donor heart was no longer viable. A few weeks later, Jonathan had deteriorated so much that he was removed from the transplant list for nearly a week. He had improved just enough to be relisted and two days later, on October 16, we received a call saying there was a heart available for Jonathan. The surgery went on into the next morning, but successful. His recovery was for the most part well and was set to be released to go home just for Thanksgiving Day, then return to stay in the Ronald McDonald House for a few weeks. The Monday before Thanksgiving he started to reject his new heart. He was placed on medicines to prevent the heart from being rejected any further and was released to the Ronald McDonald House to be close enough for doctor's appointments and in case he started to reject his heart again. He was finally allowed to go home that Christmas Eve. Jonathan  still had frequent doctor's appointments over the years and had a few times where he needed to be admitted to the hospital, but nothing dealing with his heart, mainly infections including Ebtsein-Bar Virus. His EBV was, for the most part, kept in remission. After the twins' brother, Jaylen, was born right after their 4th birthday, Jonathan had fewer times of needing to be hospitalized as well as fewer doctor's appointments. We moved to North Carolina six years ago, and he had a couple of hospital stays, but nothing more than a week at a time. His health has seemingly been stable. This year has been exceptionally hard for everyone, and we have not been exempted from the madness. My last day working was on St. Patrick's Day and we stayed afloat with my unemployment and our income tax return for several months. On Mother's Day of this year, we were on our way home and we were hit and ended up skidding three lanes over toward the median, up the embankment, flipping three times and landing upside down two to three feet from oncoming traffic, not far from a semi. My side took the worse damage and it totaled out our van, but we all walked out alive. Our only other vehicle was having mechanical issues at the time so getting to Jonathan's doctor appointments made it more difficult to get to. During his last appointment in August, his Ebtsein-Bar Virus was elevated but nothing more was looked into or thought of. The second week of September, Jonathan started to feel less energetic and hungry. He started getting fevers, first low grade then by the 20th, he started having higher fevers. They would range from 100 to 101.5 and were, for the most part, kept under control with Tylenol. We took him to the pediatrician several days in a row drawing his labs, all coming back all over the place. His fevers kept on coming, climbing higher and higher each time. Tylenol wasn't keeping them down, so his heart transplant doctor told us to give him Ibuprofen, something a transplant patient should not have because of the effects it has on the body, especially the heart and blood. His highest fever at home was 103.7 on Wednesday, September 23. I brought Jonathan to Duke for what would have been clinic but due to Covid, those who have fever need to have a Covid test in the emergency department. He was admitted through the emergency department into the cardiac step-down unit but was rapid-responded to the cardiac ICU that same night. His fevers continued to climb, and that Saturday his fever hit an all-time-high of 105.1. The doctors ran test after test, all coming back negative, all the while Jonathan was rapidly deteriorating. He was intubated that weekend, but still none of the tests being performed had a positive result. Finally, after several tests, they came back with a positive test result for HLH, Hemophagocytic lymphohistiocytosis, or a hyperinflamation of cells throughout his body. This disease attacks all organs, and in Jonathan's  case, has affected his kidneys, lungs, and liver. He was placed on several medicines to help slow the HLH down, but something else was driving it to make it worse. More and more tests were performed, both at Duke and Cincinnati Children's Hospital, including four bone marrow biopsies, a lumbar puncture to make sure it wasn't attacking his brain, several CT scans, a PET scan, and many other procedures. Finally after all of these tests, they gave him another diagnosis of PTLD, post transplant proliferative disease. This is not only a rare form of cancer but his type of cancer is found in his T-cells. Both the HLH and PTLD are being driven by his Ebtsein-Bar Virus. The only known cure for the PTLD is a bone marrow transplant but since Jonathan is a heart transplant recipient, he does not qualify for a bone marrow transplant. The only other chance to beat this cancer is to try a clinical trial T-cell therapy. There is no guarantee it will work but it is his only chance to beat this. He can only get this therapy if he is able to stay on a low dose steroid for at least two weeks. With him currently being so sick, his chances of being on a low enough steroid dose for the amount of time required are very slim. Jonathan is and has always been a warrior, and he is fighting so hard for his life. In the past almost three months, he has had to deal with so much and has overcome it all up until this point. He has had several months worth of chemo, as many as four kinds of chemo. He has had several arterial lines placed, several IV lines placed, he had compartment syndrome in his right arm resulting in an emergency faceotomy, several surgeries to place and replace dialysis catheters (once in his neck, then replacing them in his chest) as well as a perma cath placement in his chest, one chest tube placement and the potential another one to be placed at any point currently due to having air in his chest, neck and around his heart, countless lab draws, countless blood and platelet infusions, hours of intense physical, occupational, and speech therapies. This is his third HLH flare up, each one being worse than the previous and wreaking havoc on his body and organs. After his second flare up, he got as far as being days away from being discharged to the Ronald McDonald House only to be sent back to the PICU the day before what would have been his discharge day, the Sunday before Thanksgiving. By that Wednesday, he had gotten so sick he was intubated for the third time and was extubated two days ago. Fourty-eight hours before being extubated, Jonathan's doctors needed to replace his breathing tube as he had bit through the part of the tube that inflates the balloon that keeps the tube in place and prevents the air from leaking out. Something that should have been a simple swap turned into a nightmare. Jonathan's blood pressure dropped into the 30s/20s and lost his pulse. The medical team had to perform chest compressions for nearly two minutes and administered multiple rounds of Epinephrine as well as other life saving medicines as well as taking a needle to his chest to release some air pressure that was causing one of his lungs to collapse. All in all, they had a very difficult time in reviving Jonathan. He now has more air in his chest cavity around his lungs, heart and his neck. Yesterday his platelet count had dropped to 10 in the morning, received a platelet transfusion only to have a count of 11 by last night. He received a few more platelet transfusions and his most recent count is at 27, but the dialysis machine keeps on shredding them up. As of 4 this morning, he now has fluid in his lungs and cannot tolerate much fluid being pulled off with the dialysis machine because it too causes his blood pressure to drop. His blood pressure this morning had dropped to 60s/40s and he was placed on Epinephrine and Norepinephrine to keep his blood pressure up until I was able to come in so early. He will not be able to keep his blood pressure up for too much longer, even with both Epinephrine and Norepinephrine going. It is only a matter of time until Jonathan's blood pressure drops again and nothing can be done to save him. Taking the dialysis machine off will only make him pass faster by causing him to accumulate so much fluid in his body that breathing will become harder and harder for him.of his HLH inflamation markers skyrocketed again, and has been fighting daily with a range of symptoms. There have been so many hands in Jonathan's care not only here at Duke, but around the country. With every day being so uncertain and so full of ups and downs, it has been unimaginably difficult to process everything happening. Both this hospital admission as well as the time I stayed at the Ronald McDonald House from the time of his heart transplant until the day he went home, my husband not only stayed home to work and care for Jonathan's siblings, but he has also moved us completely from our home, now twice. All while, again, both times having vehicle problems. We are a strong family but our finances have taken a major hit. Between our electricity being cut, to having problems keeping food in the house and making too much to qualify for food stamps, plus the impending funeral expense, we are asking for anyone who is willing and able to help us out. We thank you for taking the time to read our story and whether or not you are able to help, we appreciate anything and everything, and we hope that you keep us in your thoughts and prayers. God bless and happy holidays.53392870_1608315718428051_r.jpeg

Donations

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  • Anonymous 
    • $50 
    • 23 d
  • Stephanie Nelson 
    • $50 
    • 28 d
  • barbara davis 
    • $50 
    • 1 mo
  • Anonymous 
    • $100 
    • 1 mo
  • Anonymous 
    • $25 
    • 1 mo
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Organizer

Chrissy Morgan 
Organizer
Asheboro, NC
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