Danielles PTLD-Diffuse Large B Cell Lymphoma

ANOTHER UPDATE: JUNE 9, 2019 This is Tina Danielle's Mom. I've been for the first time holding back on posting. Having a hard time putting my words together. I'm SCARED, worried, stressed, I start crying....... We seriously are in a scary spot right now. There has been Alot happening, Danielle and I have been here at Primary Children's Hospital more than we have been home. We got flown up here on our Own First Class VIP Jet, hosted by Intermountain Medical Flight to be monitored. Thankfully we did. (Ok im rambling on trying to find my words). We got to go to Ronald McDonald House for a few days. While there just one day my mom and I noticed that Danielle's Right eye lid was drooping and her eye was very dialated while the left was normal. This finding lead to doing a CT scan and a MRI of her head. We found PTLD most likely lymphoma in her Right Caudate, in her Central pons and on the right Cranial nerve III etc. So basically found lymphoma type cancer (PTLD) in her brain along with what is in her neck, stomach, large and small intestines. First two treatments did not work obviously.... Today we did another CT scan, Tomorrow 6/9/19 we will do GI scope/biopsy, ENT neck biopsy, Lumbar puncture spinal tap and they will administer her first dose of Chemo directly in to the spine to have a direct shot to the brain. She will get the LP w/chemo 3X in 7 days. Along with prednisolone and a few other meds. After 7 days we will know if this is going to make a difference. For now I'll just worry about getting through the first week. I can't express enough how much I'm worried about my little girl. Please please send out prayers for her she is so sick... New Update: This last Jan 2019 Danielle got very sick. She has spent most of Feb, March and Now to be 4 weeks in May in the Hospital out of State at Primary Children's Hospital in SLC Utah. She ended up getting EBV- PTLD Posttransplant lymphoproliferative disease (PTLD) is a well-recognized complication of both solid organ transplantation (SOT) and allogeneic hematopoietic stem cell transplantation (HSCT). It is one of the most common posttransplant malignancies. She did 6 weeks of rituxamab which only helped a little. Over these past 5 months she has also needed or been hospitalized for IVIG, multiple blood transfusions, 104 fevers, vomiting, placed on feeding tube, pneumonia, and the most recent/current hospitalization which was found accidentally while doing workup for her new treatment.... pneumatosis intestinalis (which can break your intestine wall and send an infection in your blood stream which can be very serious). To treat the PTLD Danielle qualified for Cytotoxic T-Cell Replacement Study. Treatment EBV-CTL immunotherapy targets EBV antigens expressed by tumor cells in PTLD. multicenter clinical trial using Epstein-Barr virus (EBV)-specific cytotoxic T lymphocytes (CTLs) generated from EBV-seropositive blood donors to treat patients with EBV-positive posttransplantation lymphoproliferative disease (PTLD) on the basis of the best HLA match and specific in vitro cytotoxicity. We have be waiting for the T-cells and it has been pushed out a few times, but they should arrive on Mon. 5/13 and she should receive her first dose on Wed. Then the 2nd dose one week later. The oncology And nephrology Drs here at Primary Children's Hospital are very excited Danielle will be the first patient to receive them at this hospital. I'm hopeful this treatment will knock out the PTLD so we don't have to do chemo and my little girl can get well again. She is 16 now, and yes we celebrated her sweet 16 in the hospital. So many ppl were so good to her. DANIELLE received her new life saving kidney September 4, 2018.... Please help with our journey of Giving the Gift of Life to sweet Princess Danielle.. Danielle is a happy 14 year old girl. Over the years she has stolen the hearts of many people with her cute smile and caring way.  She loves school, dance and music most of all. She is on an all-ability cheer team, takes Taekwondo classes and loves going to camp every summer. Danielle has disabilities and delays which has placed her in special education classes in school. The older she gets it appears she will need care her whole life. Over the last few years she has struggled with wanting to be like the rest of the kids. She has gone through a multitude of medical issues since birth leading her to five surgeries, eight specialist doctors that follow her and she is currently on her fifth team of genetic doctors for an undiagnosed rare genetic disease program. Danielle's Kidney History: She was born with hydronephrosis of her left kidney. She had surgery on that kidney at 17 months old. The left kidney was functioning partially and the right kidney was a fully strong functioning kidney. About 7 years ago Danielle's hematologist noticed in the labs that her creatinine had been high over multiple visits referring her to a nephrologist. Results of that visit was Chronic Kidney Disease in both kidneys. Over the last 7 years we have been monitoring the kidneys knowing that once she hit puberty age and the kidneys needed to work harder the kidneys would go into failure and she would need a Kidney Transplant.  Currently both her kidneys are covered in renal echogenicity (CKD), both are shrinking in size. The right kidney is half the size of the left. Danielle's blood labs show decline with every monthly visit, which is the amount it used to show in 6 months time. She takes 8 medication daily. Danielle's Nephrologist referred her for kidney transplant two months ago. Since she is a complicated case with multiple medical issues we will need to travel out of town to Primary Childrens Hospital in Utah. Her first appointment is here in mid June 2017. It will be her initial evaluation with the Transplant team.  You think your going to be ready esspecially knowing that kidney failure is coming but no one is ever ready to see their child go through something like this. I know I'm strong, and as a single mom I've gotten my girls and I through many hard life  events and medical challenges.  Honestly as I've learned more and more about the process I've been a little overwhelmed. First and most worried about Danielle then looking at the entire picture from transplant to life care, then a bit overwhelmed again trying to figure out how I'm going to do everything financially. What I know so far about this process is once all pre appointments are done and she is medically cleared to undergo a transplant then she will officially be placed on a donor Kidney Transplant list. We are hoping to find a match before she needs dialysis. I don't know how many times we will travel up to Utah before  the Transplant. Once a match is found assuming it is a deceased donor, we get the call, we drop everything we are doing and we have 4hrs to travel up there. If it's a living donor it can be more scheduled. Our stay in Utah will be 4-12 weeks. Also most likely more visits back up to Utah again. I'll have to rent a car and most likely stay at the Ronald McDonald house which is lower cost then most hotels. Insurance covers some cost, but of course there will be alot of out of pocket expenses, and a big financial burden and loss of work. I've been very worried on how I will have some sort of income during that time and keep the bills covered at home. Danielle's after care that I know so far: For the rest of her life she will be taking anti rejection medication, which lowers your immune system (she already has a low immune system) the medicine tricks your body so it does not kill off the new kidney. She will also have blood work every month. There was so much more that put me to tears about after care.  I struggled with the idea of setting this page up and asking for help. After many friends encouraging me to do so. I finally decided I would. If anyone can help in any way me and my girls appreciate it more then words can express. With all this said receiving the New Kidney is receiving the Gift of Life and I will do everything possible to provide that gift to Princess Danielle.