Brother Diagnosed

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.  

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.

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

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.