Beating Hodgkins Lymphoma Stage 3
Grayson has begun his radiation treatments. He has 22 treatments in all. The radiation field covers most of his chest, adomonen and spleen. He has a treatment every Monday-Friday, with Saturday and Sunday off. He has been extremely tired, which is normal, and has a rash on his torso, front and back, where the radiation hits. He has been prescribed medicine for his nausea, but he still has no appetite, so he is losing weight. This is due to the high dose of radiation that he receives to the area in the abdomen where the chemo resistant tumor was. He has been occupying his time with his YouTube channel Grayson ZREMAN and is very excited that a lot of you have subscribed to his channel. Please continue to keep him in your prayers.
Grayson recently contracted the Parainfluenza Type 3 virus and was hospitalized for 9 days in the PICU and the BMT unit with pneumonia. On Wednesday he had another chest X-ray and, although he still has pneumonia, he is getting better. He is still very short of breath and gets winded quickly, but that is because he was in a bed on oxygen for 9 days. On Monday, we have an appointment with his oncologist to find out when we can meet with the radiation oncologist, so he can begin his radiation treatments. This will be his 2nd time getting radiation and we are not looking forward to the daily trips to the hospital and the radiation burns. Thank you for all of your prayers and support. We really appreciate it.
Well it has been a very busy month. Grayson received 6 days of high dose chemo, twice a day. He received his stem cell transplant 2/9/17, which is considered day zero. On 2/23/17 (day +14), he was released from the hospital. As to be expected, he had mucositis, diarrhea, nausea and vomiting (every day) , but, overall, he did remarkably well. It is now day +26 and he has been released from the transplant unit, back to his oncologist. He has a pet scan on the 16th to see if he is in remission. Our hope and prayer is that he is. We will then meet with the radiation oncologist to begin his radiation treatments. He was really amazing through all of this and is truly an inspiration.
Grayson was admitted to the hospital on 2/2. He is on his 5th day of chemotherapy that he receives twice a day, once around noon and then around midnight. He is currently on day -2. Tomorrow he will have his last chemo treatment and on 2/9 he will have the stem cell transplant. Transplant day is considered Day 0 and we will count forward from there. He has done remarkably well, so far, and only gotten sick once. Please continue to keep him in your prayers, as we are told that the 2nd week will be difficult for him.
We received the test results from the tumors that were removed. The one in the chest is indeed Hodgkin Lymphoma. It did not respond to the chemotherapy, which is not good. He has a much better outcome for a cure, if his Hodgkin's Disease goes into remission with chemotherapy. We are being admitted today for approximately 5 weeks (assuming there are no complications) for his stem cell transplant. His greatest fear is a nasogastric tube (feeding tube), which is generally what these children have, because they cannot get the proper nutrition due to mouth/throat sores. He will be given several days of high dose chemo to destroy everything in his body, good and bad. He will then have the transplant and we will begin the slow road to recovery. After we are released, he will have to have several radiation treatments to the newly affected areas to make sure that the cancer is eradicated.
Grayson is recovering from surgery. He continues to receive Factor VII. The surgeon removed the areas of concern and we are waiting for the pathology results. Next week we will proceed with the stem cell transplant. Unfortunately, because our pre-stem cell transplant testing is over 30 days old, we have to repeat all of the tests again. Beginning Monday, he will have an EKG, Echocardiagram, sinus CT scan, Blood Work, chest X-Ray, Bone Age scan, Hearing Exam and an Eye Exam. We will be admitted to the hospital for the stem cell transplant on February 2nd for at least 5 weeks. The high dose chemotherapy he will receive is going to make him extremely sick. Please continue to keep him in your prayers.
Last week we received the results of Grayson's PET and CT scans. He is still not in remission. The node in the abdomen has gotten a tiny bit smaller, however, there is a new spot by the pancreas/bowel area. It was very hard for the radiologist to determine exactly what it is. Grayson's team, along with the specialist at St. Jude have determined that is best if Grayson has surgery to remove/biopsy the nodes that still remain active. We will then proceed with the stem cell transplant. They want to know why these nodes are not decreasing with the chemotherapy. If for some reason they are just reactive lymph nodes, then that will lower the radiation field that he has to have after the stem cell transplant. Today he received another round of chemo to keep the other areas in his body that had cancer in remission. He was violently sick during the chemo, but he seems to be feeling better now. He will have surgery tomorrow at 2. Because of his Factor VII deficiency, he will receive Factor VII before the surgery and again after the surgery to make sure that his blood clots properly. He will be admitted to the hospital overnight, as they will have to continue to monitor his clotting ability. I am told that he could be admitted for his stem cell transplant sometime next week, but he is going to have undergo some of the pre stem cell transplant testing again. I am not sure exactly what tests or when they will be. Thank you for all of your well wishes and prayers. It is wonderful to see all the support that Grayson has. I will update again when I have more information as to when the stem cell transplant will be.
Today Grayson is having Day 8 of his 8th 21 day cycle of chemotherapy. He seems to be sick only while he is receiving chemo and then, of course, he is exhausted for about 2 days after. The new chemo that they are trying has given him a very bumpy, itchy rash on his entire body, but especially on his chest, arms and face. He is scheduled for a PET scan on the 12th and CT scans on the 16th. Our hope is that he is finally in remission and can continue onto his stem cell transplant. If not, they hope they can remove the entire tumor to determine if it is a different type of cancer, the same cancer and the chemo is not working on it, or possibly, an infected lymph node. Please continue to think good thoughts for a full remission in a couple weeks!!!
Prior to moving to Tennessee with my husband Patrick, we enjoyed the best day ever at the park. So many amazing memories with these two luv muffins.
I have been there for almost all of it.
Please share and help this family.