My Story- An Ongoing Tale of My Fathers Battle with NHL

ebmonkey2 · Regular Joined: 16 May 2008 Posts: 12

Hi everyone. My name is Elijah and I'm here to post the story of my father's battle with NHL. It has been said that one day things can be going great in your life and the next day your entire life may be turned upside down. Well thats what happened to me.

For the greater part of my spring vacation from several weeks ago, my dad had been feeling ill. His stomach was hard and bulging, and throughout the weak he vomited, complained of discomfort, among other things I don't want to get into. One night, my father, mother, and I sat in their bed using my school laptop to research possible illnesses. We searched gastroentinitis, stomach flu, various infections, food posioning and more. And while some of the things we looked at had some of my fathers symptoms, nothing explained his enormous and turgid stomach, nothing really completely fit. Anyway, my mom, father, and I felt it was time for my father to see a doctor. He went on the following morning, the last weekend of my vacation from school. While he didn't see his regular physician, a doctor in the practice informed him he had an acute distended abdomen and that he needed to go the emergency room immediately. After hours in the emergency room, due to waits, test results, and more, etc., it appeared my dad's distended abdomen was actually a tumor. That was on Friday, March 28th. After 11 hours in the emergency room, my father was admitted, family members had been informed, and my mother and I went home only to have a sleepness night.

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Its now May 18th and here's what has happened. Initially my father was extremely sick. Evenutally he was moved to Ireland Cancer Center and assigned doctors on the transplant team, and while he didn't need a transplant during April of course, he was assigned to the transplant team doctors because of the severity of his case. He'd undergone several biopsies both of his lymph nodes, and of his bone marrow, which was thankfully ok. So many things happened, but it was only about one week after his stay in the emergency room hospital that he was moved.

He had gone from 180 lbs. upon his entry to the hospital to more then 210 lbs, not to mention the fact that he looked pregnant. A lot of the tumor was fluid, but we knew he was sick because despite the highly aggressive nature of Burkitt's, his tumor was growing fast. The doctors one day attempted fluid removal to help aid the lasix and other diuretics he was taking to remove fluid. They found blood and a ton of fluid buildup. In addition, we learned he had had an pneumonia for some time, and had to go on antibiotics while at Ireland. For around three weeks he remained in a very sick state before finally things were under control, he had undergone his first round of chemo, and he could go home. At this point, and still today the plan is to have him undergo 6-9 21 day cycles of chemotherapy. While he undergoes treatment for one week out of every 21 days, he now spends the rest of the time at home, going every day or every other day to the hospital for appointments, transfusions, and more, but its so nice to have him home after having seen him work 75 hours a week for the past 11 years of my life (in addition he lost his job 2 weeks into this, his really mean and heartless bosses replaced him, the breadwinner after 2 weeks, and he had been the manager, and head of daily operations for more then a decade). Today he is at home and doing ok, he has undergone his second round of treatment, and while he still sees the transplant team, he is taken care of by the regular oncology team, hes extremely positive. While he often finds he needs to spend 7 hours at the hospital for blood transfusions because his counts are low, or because hes had a bad day of side affects from chemo, he's amazing, and is doing pretty well. The doctors say after the 6-9 cycles of chemo, he has a couple of months off and then needs to spend 4-6 weeks as a hospital inpatient for a stem cell transplant to hopefully cure him of this.

So that is the story for right now,
Elijah
14 Year old son of Gary,
NHL Patient
So anyway, my dad was the healthiest person in my family. He takes no medications, he exercises, and he does everything right. This turned my life upside down.

brainman

Hi Elijah, I am very sorry about your father's cancer. I know very little about NHL. However, I am sure others who do know will reply. I just want to let you know that you and your father are in my thoughts and prayers.

I did delete your last name from your post. Even though this forum is as safe as it possibly can be, we have no realistic way to control who can read information posted here Wink

.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ebmonkey2 · Regular Joined: 16 May 2008 Posts: 12

Oh :O. I wasn't even aware that I had posted my last name, that was indeed a mistake, I am usually a very safety conscience internet user. Thank you for removing that information.
_________________
Dad Has Burkitt's Lymphoma
Age 52
Diagnosed March 28th, 2008

lizinva · New User Joined: 16 May 2007 Posts: 4

Elijah, I am a regular reader of this forum. I have had a few lymphoma scares so that is why I lurk.

I read your post and I was compelled to write to you to let you know that I have 2 sons a little older than you and I can't imagine them going through what you are with such bravery. You are a wonderful son to your father and I am sure he is a wonderful father because he raised a wonderfully caring young man like you.

I wish you and your father the best. I know he will fight as hard as he can and how can he not win with such a loving family. You are all in my prayers.

As hard as this advice might be, make sure you take time to take care of yourself. You need to talk to others about your feelings, I also suggest you start a journal. This will help you to deal with your fathers illness better. Care givers have to take time to themselves to reflect and recharge. Help your Mom and let her help you. I know how Mom's are : o )

I hope you will post to let us know how you and Dad are doing.

ebmonkey2 · Regular Joined: 16 May 2008 Posts: 12

Thank you so much for your kind words,
my dad is definetely a fighter and I have confidence in him. I do try and talk about my feelings, but I'll make sure to let my mom know how I feel. I will certainly make sure to keep this thread updates with his progress.

We are coming up on another really suckish part of his cycle- On thursday he has to go back to the hospital, which is always the single worst time for my mother and I, especially the day before. Even though I'm usually at home, on the tennis courts, or in the office on my latest computer game (computer games are my release, they take my focus away from cancer, and allow me to have fun when I play them) there is such an intense lonliness when he's away, I hate it.

Once again, I'll be sure to keep updating.
_________________
Dad Has Burkitt's Lymphoma
Age 52
Diagnosed March 28th, 2008

ChemoMan

Hi ebmonkey2

Sorry to hear about Dad. Don't worry too much he will be OK. I don't know much about Burkitt's but I do know the treatment is very good. Its going to be hard for your Dad and his emotions will be all over the place. Be understanding and realize that Dad is on an emotional roller coaster and as hard as it is for you, it is harder for him.
You sound like you really care for your Dad and I would say he is a very lucky man Very Happy

Don't let Dad lose his ability to laugh, even though he may feel very down. Thats where you can help the most.

Cheers and good luck
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
http://cancerforums.net/viewtopic.php?t=9620

ebmonkey2 · Regular Joined: 16 May 2008 Posts: 12

Well it sure has been awhile since I last wrote on the Cancer Forums, but I haven't forgotten about this place.

Please excuse the hurried nature of my writing.

Here is an update on my dad's cancer.

He completed his initial 6 rounds of chemotherapy. There was a mistake at the end of the sixth round, where a nurse gave him two chemotherapy drugs that don't mix at one time. The mistake was caught early, so there wasn't too much detriment to his health, however that incident combined with a ton of others, including being left alone and forgotten in a hospital hallway for five hours, caused my dad to lose confidence in his care.

His tumor had gone into remission and was sitting at about 4.4 cm down from the original 20.

My dad then fell into a depression, as the stem cell transplant was quickly approaching. He fell into a state where he would just stare at walls, and couldn't make decisions, he was very depressed. Eventually his depression disappeared and he became positive once again, but when it came time to harvest his stem cells for the transplant they found he hadn't produced enough cells for the transplant. They then figured they would try a clinical trial to get the cells for the transplant, then do radiation, and then the transplant. The clinical trial was a successful however just last week my parents came home from a consult only to tell me that the tumor had come out of remission and tripled to 13cm in size, and that even though they were able to harvets the cells for the transplant, the transplant, as well as the radiation have to be indefinetely postponed. They told him that his prognosis is grim, and that if the R-ICE treatment doesn't work, he only has a few months to live.

The treatment they are going to try next is the R-ICE chemotherapy regiment. I have done a lot of research, and have found a lot of information about the specific regiment, however the one statistic that eludes me, is the effectiveness of R-ICE. How often does it work, and what are the chances of it saving my fathers life? That is the question I want answered.

In addition, my parents are just beginning to consider alternatives, such as different hospitals, like Memorial-sloan in NY. If you have have any information regarding alternative treatments or recommended doctors or hospitals for highly aggressive Burkitt's Lymphoma, or know any valuable statistics on the R-ICE chemotherapy regiment, please let me know.

Thanks,
Elijah
_________________
Dad Has Burkitt's Lymphoma
Age 52
Diagnosed March 28th, 2008

ChemoMan · Last edited by ChemoMan on Tue Nov 18, 2008 2:53 pm; edited 2 times in total

Hi Elijah

Sorry to see you back and sorry to hear that your Dad is so sick. I'm sure you have Googled R ICE and you know what the individual drugs are. The Rituxam is very good at inducing remission in B cell lymphomas so there is a good chance it will work for your Father . Its only side effect is shock, but if it happens your Dad will be in hospital for a while. Shock is a rare but serious event. Rituxam does not cause nausea. The ICE regime however is tough, you are going to have to work hard at keeping your Dad's spirits up. Make sure he takes the anti nausea medication on time even if he is not sick. Chin up don't despair there is a good chance that Rituxam will work its magic. Burkitt's being an aggressive lymphoma should respond quickly to it.

Elijah I'm so sorry you are back here so soon and I'm hoping like crazy that things will improve. Look after yourself through all this. We will be here if you need us.
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
http://cancerforums.net/viewtopic.php?t=9620

ebmonkey2 · Regular Joined: 16 May 2008 Posts: 12

Im not Gary, Im Elijah, Gary is my father :p. Thank you for your kind wishes and information.
_________________
Dad Has Burkitt's Lymphoma
Age 52
Diagnosed March 28th, 2008

ChemoMan

Hi Elijah

Sorry about that, my bad

Its fixed now. Good luck once again. I hope your Dad does well.
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
http://cancerforums.net/viewtopic.php?t=9620

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