Jan 15, 2018 Latest post:
May 27, 2021
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. 3 Years ago Jim was diagnosed with an auto immune disease call eosinophilic fasciitis, (you can look it up) on his arms from elbow to fingers and legs knees to toes. The only medication that seemed to help keep it at bay is a low dose of prednisone. Since he had been on it for 2 1/2 years and it is not great for your body his rhuematologist suggested trying to go on a biologic called Remicade in September of 2017. He had his first infusion and did pretty well. 2 weeks later he had his second infusion and he was starting to feel great but he started to get a rash from his waist down so the doctor told him to stop with the Remicade. A month later the doctor wanted to try another med called Humira. Soon after his first injection he started feeling like he was getting the flu. Aches, fever, chills and sweats. 2 weeks later after his second injection the same thing happened. He stopped that one and again the doctor prescribed another. I cant even remember what is was called he took 1 pill but the same symptoms were happening. He has had the aches, fever, chills since October. Friday, December 1st he woke up with a 104 degree temp. I told him it was time to go to the hospital. Because of the ongoing fevers they called in infectious disease. He had about 30 vials of blood drawn and a CT scan from his head to his pelvis. They said they were admitting him and found out with the CT scan most of his lymph nodes were enlarged. Saturday afternoon they did a lymph node biopsy in his groin region and in the process the surgeon decided to also fix his inguinal hernia, which was not bothering him. He was released from the hospital Sunday the 3rd. We found out later that week he had Non Hodgkins Lymphoma. We saw Dr. Miranda, the oncologist, and he told us that the Pathologist at Mission Hospital had sent his specimen to City of Hope (COH), to a pathologist who specializes in Lymphomas due to the specimen was odd. Dr. Miranda first told us that they think it is T-cell Rich, Large Diffuse B-Cell lymphoma. He would need chemo once every 3 weeks for a total of 6 treatments. There are many sub types of Non Hodgkin and Hodgkin Lymphoma so Dr. Miranda wanted to wait to start any treatment until the 2nd opinion from COH came in. In the meantime, Jim had his bone marrow biopsy, PET Scan and port a cath put in. We were informed on January 4th that the diagnosis had changed to Nodular Lymphocytic Predominate Hodgkin's Lymphoma. He wanted us to see COH doctor, Dr. Popplewell and to do the treatment at COH. Well, we saw Dr. Popplewell on Thursday the 11th and she told us that even though he now has Hodgkins Lymphoma, it is such a rare sub type that they would still treat it as a Non Hodgkin. Even the COH pathologist, in his report, said, "Thank you for sending me this interesting and challenging biopsy". Jim also says, his mother always told him he was special. So, the same treatment will be done as they were going to do in the first place and we can have it here near Mission Hospital. However, if there are any changes and need to go back to COH, Dr. Popplewell and her team will be more than happy to take over. Its nice to know that both doctors are friends and have been communicating to each other about Jim's case. We were also told this is not curable but very remissionable . He will go into remission after his treatment and he will have to be watched the rest of his life. He was also told he could still go to work and play beach volleyball as long as he doesn't over do it and has to watch out for those that are sick around him We go to our pre chemo appointment this Monday the 15th and will hopefully start chemo this coming Thursday. Please keep Jim in your prayers. Pray that the chemo will not beat him up to badly and that he will go into remission and stay in remission. For comfort and strength and continue to focus on Our Lord and Savior on his bad days. Pray for me (Jill) that i do take time out for myself and gather strength as I will be taking care of Jim and his dad, since he also lives with us and cannot do most things on his own and I will still be running and working my business. Pray for our kids Lauren (23) and Christian (19) that they to have comfort and strength and continue to lean on our Lord. They have been great with helping us out by cleaning, picking things up from the store, and even watching their papa for us for a few hours when we need a break. We are thankful for all the love, support and kind words from our family and friends. I know this first post was very long but there are some of you that do not know what was going on and did not want leave you out. I will be adding journal entry's from now on. God Bless you all.