Prayers for Rex, diagnosed with HLH
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My friends, I'm writing to you today to ask for your help in generating a MIGHTY WAVE of healing prayer & support for my 21 month old grandson, Rex & his family. I never want to ask anyone for help~ ever…but, the unthinkable has happened and my heart is broken, as I search for ways to help them during this terrible time. The Dr.’s at Dell Children’s Hospital in Austin continue to investigate why this happened to Rex and there are still unanswered questions, but because of the severity of the illness, they have had to begin a very aggressive treatment protocol with massive steroids & heavy duty chemotherapy. What is happening inside of his little body is believed to be a rare, life threatening syndrome called “ HLH “ or Hemophagocytic lymphohistiocytosis . Basically, his immune system was triggered, by something unknown, to go into “hyper-overdrive” and it is now attacking his own little body, with a tremendous inflammatory response. It is rare & most frequently affects very young children, but the disease is seen in adults, too. Infection is a common trigger. Early treatment is critical for survival. I am sharing about this HLH, because it is easily missed, until it’s too late. Even in my own 38 years of nursing practice, and having been treated for a rare blood cancer myself, I knew little about this particular syndrome. I want to get the word out, even if it helps just one other family. Rex’s treatment is similar to how they treat leukemia. He is being treated to "calm the storm" that’s going on inside his body, until they can get him into remission. The hope is to avoid any relapse for at least a year. Depending on how he responds, the hope is that he will not need a bone marrow transplant. His immune system is low and he is very weak and listless. Initially, when I heard about Rex’s low blood levels, my heart sank. Anyone who knows me, is aware of the experiences we’ve had with leukemia & cancer; it’s a club no one wants to join and you just don’t see it coming or fully understand what’s in store for you. It’s every parent’s nightmare and extremely stressful not knowing what’s happening to your baby and waiting for a definitive diagnosis; it’s the sickest feeling.
Jonathan (my son) and his wife Teresa have navigated a very stressful time, complicated by several days of an unprecedented storm here in Texas causing no electricity, heat or water access for days on end …. alongside the pandemic – we have all had to endure. They have 2 little boys; Kubo just turned 4, and baby Rex will be 2 in May. This all started about 3 weeks ago. Rex began having very high fevers and had signaled, as best he could, that he was experiencing some random abdominal pain. Over a weeks’ time, they took him to an Urgent Care clinic twice and then to their Pedi Dr, but nothing serious was noted and they were told treat the fever. Then the storm hit. His fevers raged on, and as Rex became more restless and inconsolable, they visited their Pedi again. Blood work was taken, and his blood counts were found to be severely low. He was going to be a direct admit to the Children’s Hospital, but again, because of the storm and no water access, they were diverted to a smaller community hospital- unfortunately, they were not equipped to handle a high-risk pediatric patient. Thankfully, they were able to arrange a medical transport to Dell Children’s Hospital in Austin the next day.
Rex was admitted on Friday, 2/19. Because of COVID restrictions, only one parent was allowed to be with the baby. Luckily, Dell Children’s policy allowed both Jonathan and Teresa to be there. We were relieved for the transfer to Dell Children’s and access to the high risk specialists there. Rex has had to endure many tests, including a bone marrow biopsy, lumbar puncture, blood cultures, transfusions, scans and even being sedated for procedures, like a PICC line insertion, for the first time in his short little life. As you can imagine, Jon & Teresa have been beside themselves with worry and it is heartbreaking to see any child have to go through so much pain and fear, being too little to understand or verbalize his feelings. It will be a long haul for this little family, but they love this child beyond words and are focused on doing the best that they can for him. I am proud of Jonathan and Teresa for the resilience and strength they have shown during this nightmare. I am also proud of Kubo, as he has been such a good boy for his Nanee & Papa, even while being separated from his family. I want you to know who Rex is, because I love him beyond words, too. Because of COVID, I have missed most of their growth in this last year. I know many families who have truly suffered the separations imposed by this blasted virus. My heart just can’t bear to sacrifice time anymore; no one ever knows how much time they will have. I will post updates as I am able. Thank you for your time and care in reading my post. Any prayers, support or positive words of encouragement are greatly appreciated. I have been praying for his healing and I won't give up HOPE...we always have hope and we know that this family is lovingly held in the palm of God's hand . Please SHARE this as you can. With Love,Brenda
Jonathan (my son) and his wife Teresa have navigated a very stressful time, complicated by several days of an unprecedented storm here in Texas causing no electricity, heat or water access for days on end …. alongside the pandemic – we have all had to endure. They have 2 little boys; Kubo just turned 4, and baby Rex will be 2 in May. This all started about 3 weeks ago. Rex began having very high fevers and had signaled, as best he could, that he was experiencing some random abdominal pain. Over a weeks’ time, they took him to an Urgent Care clinic twice and then to their Pedi Dr, but nothing serious was noted and they were told treat the fever. Then the storm hit. His fevers raged on, and as Rex became more restless and inconsolable, they visited their Pedi again. Blood work was taken, and his blood counts were found to be severely low. He was going to be a direct admit to the Children’s Hospital, but again, because of the storm and no water access, they were diverted to a smaller community hospital- unfortunately, they were not equipped to handle a high-risk pediatric patient. Thankfully, they were able to arrange a medical transport to Dell Children’s Hospital in Austin the next day.
Rex was admitted on Friday, 2/19. Because of COVID restrictions, only one parent was allowed to be with the baby. Luckily, Dell Children’s policy allowed both Jonathan and Teresa to be there. We were relieved for the transfer to Dell Children’s and access to the high risk specialists there. Rex has had to endure many tests, including a bone marrow biopsy, lumbar puncture, blood cultures, transfusions, scans and even being sedated for procedures, like a PICC line insertion, for the first time in his short little life. As you can imagine, Jon & Teresa have been beside themselves with worry and it is heartbreaking to see any child have to go through so much pain and fear, being too little to understand or verbalize his feelings. It will be a long haul for this little family, but they love this child beyond words and are focused on doing the best that they can for him. I am proud of Jonathan and Teresa for the resilience and strength they have shown during this nightmare. I am also proud of Kubo, as he has been such a good boy for his Nanee & Papa, even while being separated from his family. I want you to know who Rex is, because I love him beyond words, too. Because of COVID, I have missed most of their growth in this last year. I know many families who have truly suffered the separations imposed by this blasted virus. My heart just can’t bear to sacrifice time anymore; no one ever knows how much time they will have. I will post updates as I am able. Thank you for your time and care in reading my post. Any prayers, support or positive words of encouragement are greatly appreciated. I have been praying for his healing and I won't give up HOPE...we always have hope and we know that this family is lovingly held in the palm of God's hand . Please SHARE this as you can. With Love,Brenda
Organizer and beneficiary
Brenda Lee Hayden
Organizer
Round Rock, TX
Jonathan Hayden
Beneficiary