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I started having stabbing pain in my stomach every time I ate. This went on for about 3 weeks before I finally decided to go into the Emergency Room on April 23rd. They did a CAT scan and told me that I had multiple masses throughout my abdomen, including my stomach, liver, and spleen. They transferred me by ambulance to Advent Health Apopka Hospital; where they started tests on April 26th. The first of these tests was advanced blood work, and then a bone marrow biopsy. Sun April 28th a lymph node biopsy was done in the morning. At about 8pm that night an Oncologist came into the room without introduction and told me that I had Stage 4 Non-Hodgkins Lymphoma and that I was being Transferred to Advent Health South Orlando the next day for more testing and treatment.
I was then transferred, again by ambulance, to Advent Health South Orlando on Monday April 30th. On May 1st I saw a new Oncologist(which I really like this one) and a team of new doctors. Later that night I started my first chemo treatment called R-epoch, which was just the beginning of a 96 hour treatment. The first bag was pretty rough, as I had a pretty bad reaction to the medicine, so it took twice as long was as it intended to. The next bag was started at 8pm on May 2nd and it was continuous after that. I finally ended my first round of treatment at 10pm Sunday May 5th. On Monday May 6th they did a spinal tab with a biopsy and a spinal chemo treatment. After 2 weeks in the hospital I was finally able to go to home that night, as long as I could make my blood work appointment with my Oncologist the following day May 7th, which we would not be missing.
At another bloodwork appointment later in the month,Tuesday, May 14th, my WBC had improved and gone up to 8. But, they found a chromosome in my bone marrow biopsy that shows that my lymphoma could be a more aggressive type than we believed, called Burkitt's lymphoma. We have scheduled two more biopsies for May 16th, as well as a port placement. The biopsies will be of another lymph node and of the liver.
I work as a full-time entertainment performer at Walt Disney World, while doing so we are exposed to millions of people/kids/viruses from around the world on a daily bases. With that being said I am unable to do my job while under going treatment. My Oncologist does not believe that while undergoing treatment I should be exposed to large amounts of people. My insurance with this company is doing all they can right now that's within there policy. Sady its won't start nearly fast enough.
I've applied for short term disability. If I get approved It would only last for two and a half months.
Bills are already coming in sadly. My parents are helping with them all they can but living out of state and having to travel; the cost to come help me go up and then they have their on bills money is already tight and its only the first month.
It’s really hard to ask but I can't do this alone.
May 24th- Second 96hr Treatment finished with good news from my team. Its not Burkitt's Lymphoma, I'm still at Non-Hodgkins!
After Treatment number three was finish we had a PET scan performed, to see how my body and the cancer was responding to the treatment. It was a lot of good news, so we continued on. At the fourth treatment I was reminded that I need to speak with a Bone Marrow team relating to my cancer.
July 16th- Just meet with the Bone Marrow team for the first time to discuss what they think is the best course for acton after I finish my chemo. Because I was a Stage Four Lymphoma patient, and the face the bone marrow biopsies we've had done did show the cancer is in my bones as well. The BMT team thought it best if I went ahead with a bone marrow transplant, too do two things, A make sure if there is any cancer left in my bones by the end of my treatments this will kill it, and B I will have a less likely hood of the cancer coming back.
So I said yes, but its more time out of work, and I lose short term disability at the end of the month. I'm trying to get on long-term disability but according to the insurance team I have to be without benefit for 90 days; before they can even start the paperwork for long term then however long it takes it to get to me.
Times are very hard and I love you are for your continued support, these next three months are really going to be very hard money wise.
Sept 6th- I fell on my left hip and my left foot a week after a treatment, and because there was a lot of pain, I went and got it check. We did X-rays first of both to see if they were broken, which they weren't next my doctor ordered in MRI of my hip, it lead us no where so she now thinks the pain is coming from my lower back. We do another MRI and bingo, pinched nerve causing drop foot on the left foot and pain in the sciatic nerve. Got me sent to a pain management clinic and they gave me a nerve blocker shoot where the pinch was.
My Transplant is scheduled for Oct 14! I go in on the 7th and get seven straight days of chemo before the transplant. Then as long as I don't get sick and everything is good I could get out two to three weeks after. Well the transplant went off with out any problem and I was home able to relax and recover in my own bed before the end of the month.
A month after the Transplant I was getting really sick, they did bloodwork and admitted me straight to the hospital, I got a little worse, was taken down to the ICU and there they ran a bunch of tests. Worse news ever the cancer had come back(fastest they had ever seen it happen after a transplant).
So I had to began a new chemo treatment, they found a new one that had just got approved by the FDA in July 2019, and figured that was the best answer.
First treatment started on the 9th of December and it would be a six cycle treatment, similar to my last treatment.
I was then transferred, again by ambulance, to Advent Health South Orlando on Monday April 30th. On May 1st I saw a new Oncologist(which I really like this one) and a team of new doctors. Later that night I started my first chemo treatment called R-epoch, which was just the beginning of a 96 hour treatment. The first bag was pretty rough, as I had a pretty bad reaction to the medicine, so it took twice as long was as it intended to. The next bag was started at 8pm on May 2nd and it was continuous after that. I finally ended my first round of treatment at 10pm Sunday May 5th. On Monday May 6th they did a spinal tab with a biopsy and a spinal chemo treatment. After 2 weeks in the hospital I was finally able to go to home that night, as long as I could make my blood work appointment with my Oncologist the following day May 7th, which we would not be missing.
At another bloodwork appointment later in the month,Tuesday, May 14th, my WBC had improved and gone up to 8. But, they found a chromosome in my bone marrow biopsy that shows that my lymphoma could be a more aggressive type than we believed, called Burkitt's lymphoma. We have scheduled two more biopsies for May 16th, as well as a port placement. The biopsies will be of another lymph node and of the liver.
I work as a full-time entertainment performer at Walt Disney World, while doing so we are exposed to millions of people/kids/viruses from around the world on a daily bases. With that being said I am unable to do my job while under going treatment. My Oncologist does not believe that while undergoing treatment I should be exposed to large amounts of people. My insurance with this company is doing all they can right now that's within there policy. Sady its won't start nearly fast enough.
I've applied for short term disability. If I get approved It would only last for two and a half months.
Bills are already coming in sadly. My parents are helping with them all they can but living out of state and having to travel; the cost to come help me go up and then they have their on bills money is already tight and its only the first month.
It’s really hard to ask but I can't do this alone.
May 24th- Second 96hr Treatment finished with good news from my team. Its not Burkitt's Lymphoma, I'm still at Non-Hodgkins!
After Treatment number three was finish we had a PET scan performed, to see how my body and the cancer was responding to the treatment. It was a lot of good news, so we continued on. At the fourth treatment I was reminded that I need to speak with a Bone Marrow team relating to my cancer.
July 16th- Just meet with the Bone Marrow team for the first time to discuss what they think is the best course for acton after I finish my chemo. Because I was a Stage Four Lymphoma patient, and the face the bone marrow biopsies we've had done did show the cancer is in my bones as well. The BMT team thought it best if I went ahead with a bone marrow transplant, too do two things, A make sure if there is any cancer left in my bones by the end of my treatments this will kill it, and B I will have a less likely hood of the cancer coming back.
So I said yes, but its more time out of work, and I lose short term disability at the end of the month. I'm trying to get on long-term disability but according to the insurance team I have to be without benefit for 90 days; before they can even start the paperwork for long term then however long it takes it to get to me.
Times are very hard and I love you are for your continued support, these next three months are really going to be very hard money wise.
Sept 6th- I fell on my left hip and my left foot a week after a treatment, and because there was a lot of pain, I went and got it check. We did X-rays first of both to see if they were broken, which they weren't next my doctor ordered in MRI of my hip, it lead us no where so she now thinks the pain is coming from my lower back. We do another MRI and bingo, pinched nerve causing drop foot on the left foot and pain in the sciatic nerve. Got me sent to a pain management clinic and they gave me a nerve blocker shoot where the pinch was.
My Transplant is scheduled for Oct 14! I go in on the 7th and get seven straight days of chemo before the transplant. Then as long as I don't get sick and everything is good I could get out two to three weeks after. Well the transplant went off with out any problem and I was home able to relax and recover in my own bed before the end of the month.
A month after the Transplant I was getting really sick, they did bloodwork and admitted me straight to the hospital, I got a little worse, was taken down to the ICU and there they ran a bunch of tests. Worse news ever the cancer had come back(fastest they had ever seen it happen after a transplant).
So I had to began a new chemo treatment, they found a new one that had just got approved by the FDA in July 2019, and figured that was the best answer.
First treatment started on the 9th of December and it would be a six cycle treatment, similar to my last treatment.
Organizer
Logan Hodges
Organizer
Winter Garden, FL