Brother Diagnosed

lamajn

Hi All,

My younger brother (15 years) was just diagnosed with Acute Lymphoblastic Lymphoma (non Hodkins).  It was a few days ago, so we don't have many details yet.  All we know is there was a 2+ pound tumor in his chest that was misdiagnosed as mono for about a week (until my brother was having trouble breathing and was taken to urgent care).

I am really scared for him and trying to educate myself about it as much as I can.   Unfortunately, I am half-way around the world from the rest of my family right now and was not planning on going back for another month.  Everyday, I struggle with the decision of whether to go back early or not -- I feel terrible being here when I feel like my family needs me over there.  Luckily, it seems like my younger brother has a fantastic medical team that knows what they are doing.  

Any ideas on how I can best support my younger brother and family from here?  Are there any unique needs/experiences my younger brother might have, being a teen going through ALL, that I could support him with?  Any ideas on how I can support my parents, his caregivers, in a long-distance way?  Any advice/experiences you can share would be greatly appreciated.  Thank you!

 

Pktwinprincess

Breathe Slow

Hi the first step is to take a deep breath...once that's out of the way take another one. Those first steps into cancer are scary...and I can't imagine knowing your younger brother is sick and you're so far away. I don't know much about his type of Lymphoma as I had a different type, though still a type of NHL. I do know however that your brother is young, which is a huge positive. The biggest thing you can do is be supportive through listening...I don't know if you're a Christian or believe in anything, but I am and I believe a lot of my strength came from those supporting me through prayer. Take everything one moment at a time because things happen and change quickly, for example the day of my PET scan I was told to get to the ER asap and kt was discovered that my L2 vertebrae was crushed. I was hospitalized and told they'd be doing surgery, but the day before my surgery my oncologist decided that I instead needed to immediately begin chemo...it was all very whirlwind. Ask questions and lots of them...your parents too...no question is dumb and that's how you learn. Stay as positive as you possibly can, lots of ddep breathing is helpful, but it's true that positive thinking will carry you a long way. My friend named my cancer because otherwise it had a rather long title...we call it Larry and I evicted him...day one of knowing he existed. That was July 1,  2016, and Dec 15, 2016 I was told I'm in remission. I truly believe a lot of what got me through, besides my faith, was believing I would win and knowing I could fight. However let yourself break down, you're human so feel all the feelings, just don't let yourself dwell or be drug down too far. It's not an easy road...but you and your family are not alone, reaching out us the perfect thing to do. Tap into any and all support you can, and talk about it...it's not going to go away by acting like it isn't there. But also don't talk about it, as your brother is fighting people will constantly ask how he's doing if there are any changes, and all that, and they mean well. However don't let the only thing in his young life be his cancer, it gets tiring when the only thing people ever want to talk to you about is your disease. So when appropriate bring up other things like his favorite things. He will have limitations as to what his body, health and treatment will allow, but if/when it's possible have your parents take him to do things, getting out when you can and living as normally as possible also help the healing process. Finally cancer is not a death sentence...it's terrifying and awful, but the day you start treating it like a death sentence is the day it wins. I'll be praying for your family, God bless you! 

Max Former Hodgkins Stage 3

Trial

lamajn,

You have received a beautiful welcome and testimony from Princess. 

Your brother's trial will be tough, and the family often has a tougher time than the patient, as strange as that may seem. I have always said that my wife and young kids have had a harder time with my cancers than I have.  You do not say how old you are, or why you are around the world, but assuming your parents are there with him, I would continue with what I was doing. With SKYPE and letters you can share your love and concern for him from where you are, and logistically, there is probably not a lot you can do immediately by returning.  He might feel a little guilt if he disrupts your affairs at this point. 

He is a KID.  Adults feel many things at diagnosis: anger, fear, even guilt.  He may feel all of these and more.  I cannot imagine....

ALL is a sort of hybrid disease, that manifests itself somewhat as leukemia, somewhat as  lymphoma; clinically, the differentiation is BLURRED.  Both are sister White Blood Cell (WBC) cancers.  It is called "Lymphoma" when the cancer is primarily based in lymphatic cells.  The science is complex, but just know that it is usually a T-Cell-based disease, whereas most lymphomas (not all) are usually derived from what are called "B-Cells."   Leukemias are of several types, but "Acute" tends toward more aggression than the other general classification, which is "Chronic." It is one of the most common childhood-adolescent cancers.

We have a resident T-Cell lay expert here, PoGuy. I am sure he will write soon regarding your brother's ALL. He can provide much more precise information that I have no knowledge of.

Your brother's treatment will no doubt involve intensive cheomotherapy drug combinations. Possibly radiation as well, but primarily chemotherapy.  Your family and he will learn a lot as the next days and weeks pass, and things are resolved, regarding a treatment plan.  His doctor will need to be an expert hematologist (a blood oncologist), and preferrably one with experience with this disease.  I hope he is in a world-class treatment facility.

Bless you all with this meteor that just crashed through the roof into your living room.  I feel certain that Po will write to you soon.  

po18guy

ALL can be either a B or T-cell disease

Sorry to hear about your brother's diagnosis. Since ALL is so rare, I consulted with MacMillan, a UK cancer organization which has a very informative website. Their page on ALL is here. The young almost never get indolent (slow-growing) cancers - they are almost always aggressive. I don't know where your brother lives, but I would hope that he is being seen at a large cancer research facility or teaching hospital. A local clinic or cancer center, in my opinion, is just not good enough. As to what you can do, Max's suggestion of SKYPE is brilliant. Technology shrinks the miles to a few inches away. 

Do let us know how things go for him.  

lamajn

Better News

Hi All,

Thank you so much for your advice.  It was heart-warming and has really helped me sift through my emotions and understand ways in which I can support my younger brother and my family.

Starting with updates on my younger brother's side:

His doctor started him on an intensive chemo drug combination very soon after he was admitted.  He said that my younger brother would probably have to stay in the hospital for the first month of his chemo - with the 2 pound tumor on his windpipe, it is too risky to let him go home.  He cannot eat while in the hospital, again due to the tumor in his chest.  I saw pictures of my brother - he has breathing tubes, feeding tubes, IVs, etc. - it is SO scary!  Luckily, he is getting treated at the Lucille Packard Children's Hospital in Stanford University, and his doctor is one of the best pediatric oncologists in the world.  

He has ALL of the T-cells.  Doctors also found traces of the cancer in his central nervous system.  They gave my parents the full treatment roadmap, but I haven't asked about the long-term details yet -- my parents are very focussed on what is happening right now.

Now updates about me:

Thank you so much for your support and advice, I have decided to stay abroad for the last few weeks!  What helped me A LOT was talking to my younger brother on the phone.  Hearing everything secondhand from my parents left a lot of question marks in my mind as to how my younger brother was actually doing.  Talking to him helped reassure me that he was in good hands.

Max, to answer your question I am 19, and I have been spening the last 1.5 months volunteering to develop technology for a school for the blind and deaf in India.  That was what made the decision to go back so hard.  I KNOW I am helping people's lives in India, and I was unsure whether I would be able to help if I went back home.  The first few days, there were times when I would randomly start feeling an intense sadness and begin tearing up.  (Pktwinprincess, your advice to "let myself break down" is so pertinent - I will try to stop bottling up these feelings!)  However, as I mentioned talking to my parents and younger brother regularly has helped SO MUCH.  Writing here also helps.  And I have told some of my closest co-volunteers about this, so they are receptive to my spending long periods of time on the phone or email with my family.

I have found multiple ways I can support them from abroad.  First and foremost, my talking to my parents and younger brother.  My parents are also going through a lot, and need to unwind.  If I can be strong on the other side of a phone and help them catharsize, that will increase their ability to help my younger brother.  Not to mention, talking helps me as well.  I have also been able to support by keeping my brother/parent's well-wishers up-to-date.  They want to know how my younger brother is doing, but my perspective is they shouldn't add extra burden to my parents who are already busy by being on the frontlines at the hospital.  So I help provide updates to friends and extended family members.  Lastly, I have started making a photo-collage for my younger brother - of pictures of him smiling, doing what he loves (he was an avid cross-country and track runner), spending time with friends and family, etc.  I hope it will cheer him up and help give him strength - I'll keep you all posted on how he recieves it!

Pktwinprincess, I will keep your advice in mind about not solely talking to my younger brother about cancer.  I have been guilty of that the last week.  But coming to think of it, given the frequent visitors he has (many of my parent's friends drop by to provide home-cooked food), I am sure he is getting inundated with those questions - I'll try to focus on other stuff that might cheer him up.

Max, your comment on how the fact that he is a kid would likely change his emotional responses to the cancer rings very true to me.  Does anyone have any experience/advice regarding how a teenager might experience cancer, and any forms of unique support he might need?

Once again, thank you ALL for your comments, and I will continue to keep you posted.

lindary

communications

I think it is great that you are going to take on the task of keeping family & friends updated. I had my treatments in 2015 for follicular non-Hodgkins Lymphoma. I was able to work most of the time between treatments. To keep the people at work updated I set up an email group of the people I had to update and added ones who asked to be keep updated. I did the same with my personal email for family & friends. To make it easy on myself I sent the same message to all my groups, making some changes to personalize it for that group. 

There are also sites where you can set up a page to post updates and people can post their comments. The only people who can see the pages are ones you invite. Some sites might have an option to make it public. The nice thing with this is your brother can read it when he is able. 

Another option is a private group page on FB. 

So you are working in India. I work with a lot of consultants who are from India. When I told them I had cancer and what I would be ing going through many said they would pray for me and a few asked if it was ok if they asked the family back home to also pray for me. What I am saying is that if you believe in pray I would not hesitate to let some of your students know that your brother needs their prayers. You don't need to go into details about what is wrong, just that he will be in the hospital for a while. Then just update then every so often. I am sure some of them may want you to give a messsage from them. Do so. I bet your brother will like getting such messages. The side effect will be a level of support for yourself. 

Best wishes to your brother and your family. 

Max Former Hodgkins Stage 3

lamajn said:

Better News

Hi All,

Thank you so much for your advice.  It was heart-warming and has really helped me sift through my emotions and understand ways in which I can support my younger brother and my family.

Starting with updates on my younger brother's side:

His doctor started him on an intensive chemo drug combination very soon after he was admitted.  He said that my younger brother would probably have to stay in the hospital for the first month of his chemo - with the 2 pound tumor on his windpipe, it is too risky to let him go home.  He cannot eat while in the hospital, again due to the tumor in his chest.  I saw pictures of my brother - he has breathing tubes, feeding tubes, IVs, etc. - it is SO scary!  Luckily, he is getting treated at the Lucille Packard Children's Hospital in Stanford University, and his doctor is one of the best pediatric oncologists in the world.  

He has ALL of the T-cells.  Doctors also found traces of the cancer in his central nervous system.  They gave my parents the full treatment roadmap, but I haven't asked about the long-term details yet -- my parents are very focussed on what is happening right now.

Now updates about me:

Thank you so much for your support and advice, I have decided to stay abroad for the last few weeks!  What helped me A LOT was talking to my younger brother on the phone.  Hearing everything secondhand from my parents left a lot of question marks in my mind as to how my younger brother was actually doing.  Talking to him helped reassure me that he was in good hands.

Max, to answer your question I am 19, and I have been spening the last 1.5 months volunteering to develop technology for a school for the blind and deaf in India.  That was what made the decision to go back so hard.  I KNOW I am helping people's lives in India, and I was unsure whether I would be able to help if I went back home.  The first few days, there were times when I would randomly start feeling an intense sadness and begin tearing up.  (Pktwinprincess, your advice to "let myself break down" is so pertinent - I will try to stop bottling up these feelings!)  However, as I mentioned talking to my parents and younger brother regularly has helped SO MUCH.  Writing here also helps.  And I have told some of my closest co-volunteers about this, so they are receptive to my spending long periods of time on the phone or email with my family.

I have found multiple ways I can support them from abroad.  First and foremost, my talking to my parents and younger brother.  My parents are also going through a lot, and need to unwind.  If I can be strong on the other side of a phone and help them catharsize, that will increase their ability to help my younger brother.  Not to mention, talking helps me as well.  I have also been able to support by keeping my brother/parent's well-wishers up-to-date.  They want to know how my younger brother is doing, but my perspective is they shouldn't add extra burden to my parents who are already busy by being on the frontlines at the hospital.  So I help provide updates to friends and extended family members.  Lastly, I have started making a photo-collage for my younger brother - of pictures of him smiling, doing what he loves (he was an avid cross-country and track runner), spending time with friends and family, etc.  I hope it will cheer him up and help give him strength - I'll keep you all posted on how he recieves it!

Pktwinprincess, I will keep your advice in mind about not solely talking to my younger brother about cancer.  I have been guilty of that the last week.  But coming to think of it, given the frequent visitors he has (many of my parent's friends drop by to provide home-cooked food), I am sure he is getting inundated with those questions - I'll try to focus on other stuff that might cheer him up.

Max, your comment on how the fact that he is a kid would likely change his emotional responses to the cancer rings very true to me.  Does anyone have any experience/advice regarding how a teenager might experience cancer, and any forms of unique support he might need?

Once again, thank you ALL for your comments, and I will continue to keep you posted.

Not likely

lamajm,

As noted, childhood cancers are so rare that it is unlikely anyone here will have much experience with it.  But, my own cancer hospital has a Shriner's Hospital next door, so there are kids around when they must go to equipment in the "adult" areas.  My first-ever trip to see an oncologist (which was in the hospital), we were waiting very early for an early appointment -- it was not even really light outside yet at the time.  So, the waiting area was empty....I have always been a squeemish person, unable to deal with  seeing disfigurement, so I was fearing what I might encounter.   The FIRST other people to come in were a couple with their son, about 12.  He was a delightful youth, but I noticed a scar all around his head.  They explained that the top of his cranium had been cut off and  removed to access a brain tumor, and then reattached.  I thought, "We are not off to a good start here."  The next patient was an older man, who had had most of his neck cut away, and spoke through one of those electronic amps that people hold to their throats.

As Po noted, kids almost always, when they get cancers, get very aggressive strains. To my knowledge, doctors do not know why this is.

Your brother sounds, from what you have added, profoundly ill. Know that it could end badly.

But let us pray that it does not,

max

lamajn

I'm Back Home!

Hi All,

Sorry I haven't posted updates in a while.  But the good news is, I'm finally back from India, and my younger brother is doing considerably better!  At first, the doctors had expected him to have to stay in the hospital for at least a month.  But his body reacted surprisingly well to the chemo -- the tumor started shrinking, the swelling in his face died down, and after 2 weeks the doctor felt he was stable enough to resume eating.  (That made my brother really happy, since he was getting fed through feeding tubes he had really craved real food, and had taken to watching the Food channel to partly fulfill those cravings.)  Then, after a few more days, the doctor felt that he was stable enough to be discharged.  Some of his medicines, the doctor has trained my parents to administer.  For others, he has to go back to the hospital multiple times per week to get them.  But it is just so great to have him back at home, instead of perpetually connected to pipes in the hospital! 

Since his immune system is very weak due to the chemo, the doctors require him to come back to the hospital for any small symptom of additional sickness (sniffly node, constipation, cough, fever, etc).  The day I came home from India, he had to go back to the hospitel (the ER, since it was a weekend), because of constipation.  My parents wanted me to stay at home to get over jetlag, but I insisted on going - after a month of feeling like I hadn't been doing enough to help, I really wanted to support my younger brother in whatever way possible.  Boy, was that a good decision!  While in India, one of my fears of ending the trip early and coming home was that I may not be needed (I may just be dead weight).  But since coming back, I have realized that you can always find a way to make yourself useful.  Whether it is going down to the cafeteria to grab food for my family members (or introducing them to new technology that allows them to easily order delivery  ), or staying in the hospital room with my younger brother so my parents can catch a wink of sleep (that night he was in the hospital till 5AM, and since then there has also been one overnight), I can always find ways to help out.

As can be expected, even at home my younger brother is sleeping a lot, and is very weak.  It is sad to not see him as the energetic person he was, but he has also adopted an amazing outlook of spending all the energy he has at actively trying to do stuff that will help him beat cancer.  For example, when his friends come to visit, if he feels up to it he will make it a point to go downstairs to meet them as opposed to having them to come up to his room, so he can get some bloodflow into his muscles.  I have also realized that in addition to checking up on him frequently and getting him food/water, I can also be helpful by talking to him about non-cancer related stuff (he gets annoyed when everyone asks him "how are you doing?").  I knew nothing about sports beforehand, but I have been forced to learn so I can talk about them with him.

We had his 16th birthday party today.  It was such a nice event, a lot of close family-friends came and we were just so pleased and felt so blessed to all be in the same room together to celebrate my younger brother and his so-far positive fight against cancer.  He was too tired to stay awake for the whole party, but I think he enjoyed it as well.

In retrospect, I find it really interesting the degree to which my younger brother's diagnosis affected my stay in India.  What I mean by that is I was taking to my family every morning and every evening, so my mind was no longer on India time but rather California time.  When I look back at the last month of the trip, I actually barely remember anything from my stay in India -- almost all of my memories are conversations I had related to my younger brother's cancer.  I guess that is my mind's way of coping with it...

Lindary, thank you for your advice to have some of the students in India send my brother a message.  I videotaped them sending a very kind get well soon message to my younger brother, and my brother loved it!  I'm so glad that I was able to cheer him up in small ways, even from so far away.

My younger brother has finished the first month of his treatment, but he still has another 6 month phase of treatment (I believe this is called intensification?) and then a 2.5 year maintainence phase.  I am glad his body has been reacting well to his treatment so well so far, but it seems like a long journey ahead and I plan to support him as much as possible, whether I am physically with him or away in college.

Thank you all for your support, advice, and prayers, and I will continue to keep you posted!

lindary

Welcome back

Sounds like your family is handling things as well as can be expected. I love your attitude about finding ways to be helpful. 

As to your brother's feeling of weakness, that is part of the battle. Do encourage him to try to do some walking every day. When I did the 6 cycles of R-Chop i also kept working and going into the office 9 out of the 15 week days. I felt pretty good when the treatments were done. Then I had to do 3 cycles of RICE which required 3.5 days in the hospital. During those 3.5 days I spent more time sitting and laying than I did walking. I also felt more tired when I got home. Even though I was still going into the office I was definitely more tired. My big mistake was not pushing myself to do more walking when I was at the hospital. Of course at my age the muscle strength is lost easier that with someone as young as your brother. My point is that in some ways being tired and sleeping alot does encourage the body to be more tired. Somedays the high point maybe changing PJs.  LOL

Wishing all the best for your brother and your family.