Chemo in our child's future

[Familia]

Hello everyone,

I am so sorry to share sad news, but I can use the help of all of you who have helped our family and our homeschooling journey beyond measure since 2005.

Our 19 yo ds will begin treatment soon for lymphoma (probably Hodgkin's). Within one week, he went from going into an urgent care out of state for what he thought was bronchitis to settling his room at home today with all of his belongings that he and his father moved out of his dorm on Thursday. We are functioning on the hope that our son has that treatment will go as planned and he will be able to move forward with his education and life after this this time of sacrifice. We are sustained by a loving group of prayerful friends.

Those friends have asked to help in someway. I am asking you all if you can think of what we might be able to suggest that would be of help to comfort and distract our son, as well as help our family as we go through everything. A friend suggested we might need a temporal thermometer. I also thought that an audible membership might be good.

Also, any advice you can give to help me help him would be wonderful.

Thank you so much for listening!

[bettyandbob]

((hugs))

 

Prayers for your DS and your family.

[BlessedMom]

Praying for you, your son and your whole family.

(((((((((((Hugs)))))))))))

[fraidycat]

:grouphug: :grouphug:

 

Maybe grocery shopping or pre-prepping some easy meal ingredients. Having pre-diced onions, veggies and whatnot to enable you to throw together quicker meals, soups, etc. Pre-washed and torn lettuce for easy salads, etc. A few friends could rotate weeks.

 

For your son: funny movies, stand-up comedians, funny books. Laughter is the best medicine.

[happypamama]

I'm so sorry.  Prayers and hugs for him and your family.  Such a big shock that must be!

 

Is he affiliated with a hospital for treatment?  (I'm not sure how chemo for a young adult works.)  If so, their social worker might have some tips and such for helping everyone navigate and cope with this time.  Also, I don't know if you have younger children, but the hospital may also have a child life specialist who can help the younger ones understand in age appropriate ways.  I didn't realize until recently how much those people support the families.

[Tree Frog]

We went through this with my MIL, but I think this is different for you than it was for us. My prayers are with you and your family.

 

One of the things we did was to keep a journal we took with us to every doctor appt. My MIL opted not to do chemo, but I would take it to chemo, too, in case the nurses said something useful. It's easy to think you'll remember what they say, but later, it's difficult to recall the information. We put dates, doctor names, addresses, phone numbers, what the doctors told us, lab results, questions we had, really, anything related to her lymphoma. We could go back to reference something if we had a question that had already been answered or, if it had been answered differently, we could ask for clarification. Also, be sure your son puts you and your husband on his hippa form so you can talk to the dr. directly and the dr. can talk to you.

[Miss Tick]

Good wishes for your family.

[happypamama]

Oh, yes, definitely get a notebook and take it to all appointments.  Date everything.

[Joyofsixreboot]

For ds audible sounds great. Maybe a dsi with games. It's portable, light and distracting. I would hook him up with a support group. Do not forget yourselves and your needs and need for support also. Meals for the family and housecleaning might help you. My prayers for your family.

[alisoncooks]

Prayers.

In Nov. 2014, my DH was diagnosed with T-cell lymphoblastic lymphoma. It was a whirlwind in the beginning.

 

Magazines, hard candy, hand held video games for your son (iTunes gift cards).  Will your son's treatment be in-patient or out-patient?  (DH was on a regimen where he spent a week in the hospital every month for chemo.)  Bedroom slippers for use if he's inpatient. Warm robe.

 

Gift cards for gas/Starbucks/fast food for your family -- great help!  My girls & I spent so much time going back and forth to the hospital.

 

See if your hospital has a family resource center.  Ours did and it offered so many things (free haircuts for patients when they started losing hair; massages for patients; video game consoles to be checked-out; family coffee/breakfast hours).

 

Also, keep diligent track of bills/financial stuff.  Make a friend in the financial dept. that can explain overly-complicated bills to you.  

Edited January 28, 2017 by alisoncooks

[happi duck]

(hugs)

[Anne in CA]

I just wanted to say you are in my prayers.

[Twigs]

… One of the things we did was to keep a journal we took with us to every doctor appt. My MIL opted not to do chemo, but I would take it to chemo, too, in case the nurses said something useful. It's easy to think you'll remember what they say, but later, it's difficult to recall the information. We put dates, doctor names, addresses, phone numbers, what the doctors told us, lab results, questions we had, really, anything related to her lymphoma. We could go back to reference something if we had a question that had already been answered or, if it had been answered differently, we could ask for clarification. Also, be sure your son puts you and your husband on his hippa form so you can talk to the dr. directly and the dr. can talk to you.

 

I started doing this for my mom about 15 years ago when she had a kidney removed. It's been an invaluable reference since then. I keep everything, notes in a journal and documents in a binder. I am diligent about getting business cards from doctors, clinics, treatment facilities, etc. I like to put the date of the visit on the back of the card, especially for places we don't go to ofter, (ie too much trouble for her PCP)

 

So sorry  your family is going through this. Best wishes.

 

:grouphug:  :grouphug:  :grouphug:

[displace]

Prayers for your DS and your family.

 

Depending on the type of chemo, DS may be nauseous just by smells of cooking. The idea to prepare meals ahead of time could be very valuable not just for a time saver, but if your DS cannot tolerate smells of cooking.

 

Everyone in your family should be updated in your vaccines.

 

You may want to get face masks for DS when he has to go out of the house when he is immunocompromised to prevent illness (some), and for you and DH if you're sick to prevent spread to DS.

 

((Hugs))

[Selkie]

I'm so sorry! I'll be thinking of you and your son and hoping for a quick recovery.  :grouphug:  :grouphug:  :grouphug:

[Barb_]

I'm so, so sorry. No advice, just a warm hug.

[creekland]

Sending  :grouphug: and prayers from here.

 

We've had kids at school endure bouts with cancer.  One thing they've told me is they like being able to keep up with everyone as much as possible, but they also really appreciate when others realize they need down time.  I've told them point blank, "Tell me what you need or want.  I want to help out as much as I can, but I need you to fill me in."  They've been good at doing that.  I strongly suggest opening that line of communication if you don't already have it and letting him lead as he wants or needs to.  It's all new to all of you.

 

Otherwise, watch out for smells/scents.

 

And if there's a support group around, check that out.  Some kids have liked it (liked knowing others are in a similar boat and making friendships that way) and others haven't.  I'd let him lead.

[Scarlett]

So sorry.  One thing I find comforting is to keep track of who checks on him via phone call, visit, etc.  Later when he is feeling better he can look back and see all the names and it will bring him a smile to see all who cares.

[AK_Mom4]

Connect him back up with some of his friends that are local if those connections have slipped while he was away at college.  For young folks especially, having that occasional text message or snapchat can help with the depression that is very likely with chemo.

 

Soft blankets, a warm cap, super soft pajamas, warm slippers and a robe.  Unscented lotion for dry skin and good lip balm.  A 3DS for playing games or gift cards (google play for android or iTunes for Apple) for phone games to help pass the time.  

[Stacia]

:grouphug: :grouphug: :grouphug:

[school17777]

What a shock this must be for all of you. My prayers are with you and your ds.

[TranquilMind]

I'm so sorry.

Praying for total healing and restoration for your precious son. 

[Liz CA]

Listening may be the most important thing. Letting him vent his fears and frustrations and not trying to convince him that they are unfounded or anything else - but simply validating them.

Acknowledging that this sharp turn in the path of life is scary and/or makes him angry or question some things he had taken heretofore for granted. I think letting him know that he is entitled to whatever he feels and it's okay with you.

If you encounter stoicism or silence, your empathy may help him open up.

This is a shock to the whole family. Take it a day or even hour at a time.

 

I think you will get good suggestions for distractions, i.e. books and audio subscriptions.

Edited January 29, 2017 by Liz CA

[NikiSC]

I just prayed for your son and your family.

A few thoughts to keep your household running: house cleaning help, disposable everything (plates, cups, cleaning wipes, swiffer pads, etc.), meal delivery.

Games, audible, journaling stuff as mentioned up thread.

If you have other DC perhaps help with them?

I'm truly sorry to hear your news and I will continue to pray.

[Guest]

How terrifying for your whole family. Gentle hugs as you begin treatment and I'm praying for the very best outcome.

[Rachel]

I'm sorry! Saying a prayer for you.

[TechWife]

I am sorry to hear this. I will be praying for your son and your entire family. 

 

On the legal side, your son should complete: 

A HIPPA release for all of his medical providers (physicians, pharmacies, hospitals, therapists, social workers, etc.) so that they can talk to you about his care and his bills

He should indicate to his insurance company that they have his permission to talk to you about his coverage

A medical power of attorney so that someone can make decisions if he is unable to do so

A financial power of attorney so that someone can take care of his financial affairs (arrange student loan repayments, car payments, etc.) should he be unable to do so

A living will - to indicate what treatments are acceptable to him under which circumstances (he may change this as he goes along, and that's fine)

A last will and testament - even if he has little to no money or belongings at this time

Checking/savings account - add a parent as a joint owner of the account so that funds can easily be accessed when needed (a power of attorney is not always enough)

 

 

 

 

 

Edited January 29, 2017 by TechWife

[Alicia64]

First, I'm so very sorry.

 

Second, this will sound dumb, but it's really, really funny -- and the laughter will be great for your son. It's a podcast by two guys on the radio in CA. They bill themselves as "the voice of the West." (They're on the radio in CA, OR, WA, AZ, MT, but you can easily get it on podcast: the Armstrong & Getty show.)

 

I cannot tell you how funny these two are. Just wonderful. They've had people write in and tell them, "You made a really hard year much better for me. Thank you."

 

I've been listening to them for 18 years. They're so, so funny. They talk about everything under the sun and definitely politics, but in a fun way. I don't know how else to describe it. They lean right/libertarian, but they keep open minds so they're not super black/white thinkers.

 

One of the two, Jack, had cancer and chemo himself. He was out of the woods -- for the most part -- about two years ago. Obviously it was life changing for him and he talked about it on-air. Joe, the other, has three older kids: 24, 22, and 18. Jack has two littles: 7 and 5. The two guys are 51.

 

If you son just listens to them for a week, he'll be hooked. They're on for four hours so without commercials on podcast, your son gets two+ hours to listen each day.

 

Alley

 

 

[Forget-Me-Not]

I'm so very sorry ((hugs))

[EmilyGF]

Hugs.

[Kassia]

:grouphug:  Big hugs to you and your family.  

[TCB]

Praying for you all. I've not been in your situation but I would imagine doing all you can to encourage contact with friends if he wants that. One of the girls in my class at school was hospitalized for a fairly long time and one of our teachers faithfully took us kids to see her. I think she really appreciated the contact. The only other thing I could think of was food or meals, particularly if your son has a yearning for some special food. I made gravy and froze it for my friend when she was going through chemo because mashed potatoes and gravy were easy for her to eat and that way she could just cook the potatoes and didn't have to fuss with making gravy. I think people really like being able to help in any way they can so it's great that you're giving them the opportunity to do so.

[Guest]

Audible and Spotify. Music is great at these times.

 

And I am as sorry as I can be for this detour. Please God may it be no more than that. He's still really young and there is a lot of time, even for s long detour.

[Guest]

Very sorry your family is going through this. I don't have any advice, just healing thoughts.

[Schadenfreude]

I don't know what you need but I just wanted to give you :grouphug: and prayers.

[38carrots]

:grouphug:

 

Check out free audiobooks by LibriVox on youtube. They are usually not read by professionals, and some voices aren't the best, but there's a certain charm in the idea that someone, somewhere, cared enough to read and record a book so that others could enjoy it.

[umsami]

:grouphug:

 

Know that chemo drugs have changed a lot and many advances are being made daily.  When my Dad first was diagnosed with leukemia, he was doing hard-core IV chemo...that basically hadn't changed in 20 years.  Then monoclonal antibodies came out, which were much better.  Then even a pill, called Imbruvica.

 

A friend fought Non-Hodgkin's Lymphoma 15 years ago, but it was so long ago, I doubt the advice still stands.  He dealt with mouth sores from the chemo.  There are mouthwashes and such that can help.  He also had a hard time keeping weight on, so was on a special form of Ensure.  I would hold off buying anything like that until you talk to people.

 

Join an online support forum for your son's type of cancer.  That's where you'll find the experts who can tell you what you need to know.  I was also on a Yahoo group (but I think that's a bit dated).  Still there were two experts on the group (researchers in the UK), and they actually emailed me and offered targeted advice (that worked!) for my Dad.  It was really neat.

 

Audible is great....your library should have books.  I know I can loan others some Kindle books I buy, need to see if that works for Audible.  If so, make requests here if you're looking for stuff.  With so many Moms interested in education and who love reading, I bet we could serve as a library ourself.

 

If you have a faith community (or any community, old Scout troops, homeschool co-ops, sports teams), reach out.  Don't be afraid to ask for what you need.... be it freezer meals, somebody to help clean, rake leaves, or even stay with him so you can have an afternoon off.

 

Lots of  :grouphug:  and prayers for you.   Know that so many people out there want to help your son and your family through this.  Just ask.   :grouphug:

Edited January 29, 2017 by umsami

[catz]

:grouphug:   I'm so sorry!  I think you've gotten some good suggestions here. 

 

I know 2 different families whose sons went through treatment for Hodgkins and they both are doing very well afterwards.  It was a hard period, but they both came through with flying colors.  Hope his treatment goes very smoothly.  Many hugs.

Edited January 29, 2017 by WoolySocks

[readinmom]

I am so sorry to hear this...prayers and hugs for all of you.  ITunes gift cards, netflix, comfy lounge pants, socks, and possibly one of those steel tumblers with the reusable straw...

[ikslo]

:grouphug:

[TravelingChris]

Prayers for your family and your son in particular.

[OneStepAtATime]

1. unscented lip balm, unscented lotion, warm house shoes and skid proof socks.

2.  Audible subscription.

3.  Possibly Great courses on streaming if he finds learning of that nature to be interesting/a good distraction.

4.  Maybe wireless noise canceling headsets paired with a Kindle Fire.  He could listen to audio books or watch programs or listen to music or play video games all on that one device at home, during treatments, on drives to and from treatments, etc. without having to deal with much outside noise or worrying about bothering others or having to hold his Kindle.  He can put it in a pouch or pocket or small (really small, like purse size) backpack.  

5.  Small backpack (as mentioned above) that is always kept stocked with the lip balm/lotion/socks/Kindle charger/small snack.

6.  Maybe some board games that don't take much time or a lot of thought to play but are easy to whip out as needed/interested.  Maybe something like Tsuro or Munchkin or checkers or even something like Zombie Dice.

7.  Is there a TV series he was especially fond of but hasn't seen in a while?  Sometimes I found it easier to watch a show I was already familiar with so I didn't have to put as much effort into sorting out plots and characters, but I hadn't seen in a while so it was sort of new, too.  Honestly I sometimes had the same need when reading books.  It worked better when my brain was foggy or fatigued if I could read or listen to a book series that I was already familiar with, even if the book was one I had not read.  Reading books in a series meant I didn't have to completely start over with characters and setting for each book.

8.  Get in touch with support groups for young adults dealing with similar medical conditions.

9.  Try finding meals that are easy to prepare and you can freeze.  Make double amounts and freeze half for pulling out later as needed.

10.  Plan to need to avoid strong smells.  If anyone in the family wears perfume/cologne they may need to stop or only wear it away from the house.

11.  If he doesn't have one, get him a really soft, warm robe.

 

:grouphug:  :grouphug:  :grouphug:

Edited January 29, 2017 by OneStepAtATime

[SparklyUnicorn]

:grouphug:

[Another Lynn]

:grouphug:  :grouphug:  :grouphug:

[mommyoffive]

I am so sorry that your family is going through this.  Sending all my good thoughts his way. 

[mom2samlibby]

My husband had hodgkin's lymphoma.  He was diagnosed in 2007.  He's still doing well.  

 

They told us that if you have to have cancer that hodgkin's is the kind to get.  Not really what you want to hear when you are in the middle of it, but I guess they were right, since we are now 10 years out and he's fine.

 

My husband was able to continue to work throughout his treatment.  He scheduled chemo on Friday's, so he would work some in the morning and then go for his treatment.  He would come home and sleep the rest of the day and take it easy on Saturday.  Then, he was back to work on Monday.  I think being able to work really helped him a lot, as it gave him something to focus on and a goal.  I know he would have gone crazy without that.  

 

Spicy foods were a no-no on chemo days.  I think I heard that they would impact the chemo.  You might want to file that away in case people start bringing meals.  We did luck out and my husband never really had any food aversions or never got sick from the chemo.  He just got extremely tired from it.

 

One thing you might want to consider (and I know he's young, so this might not be on his radar at all) is banking his sperm.  I had hoped for another child or two after he was done with the chemo, but his sperm count is at zero.  Had we known this, we might have banked some before, but it was not mentioned.  It may not affect him, but if children are at all a consideration down the road, he might want to think about banking.  

 

Good luck to your son and your family!  

 

 

[alisoncooks]

 

One thing you might want to consider (and I know he's young, so this might not be on his radar at all) is banking his sperm.  I had hoped for another child or two after he was done with the chemo, but his sperm count is at zero.  Had we known this, we might have banked some before, but it was not mentioned.  It may not affect him, but if children are at all a consideration down the road, he might want to think about banking.  

 

Good luck to your son and your family!  

 

Yes, I was just coming back to post something like this.

Find out from your doctors whether or not the treatment they'll be using will affect your son's fertility.

We were told that if we planned on having more kids, we should bank DH's sperm prior to the beginning of the treatment.  IDK if that is dependent on age or medications or what, but definitely something to consider for such a young man!

[moonsong]

((hugs))

[Familia]

You are all so kind! I haven't had a chance to read all of your responses or like all of the replies. Browsing all of the caring, thoughtful messages and seeing all of the information to consider and prepare for has helped me so much already. I appreciate having a thread to go back to over and over again to glean so much love and good advice!

I wanted to add that we also have a teen dd at home who can help with meal prep. There seems to be so much variety in responses to chemo. I know that I cannot see the future -- I have to fight the urge to wonder/worry. We will be given the grace when we need it, I am certain.

We agree with the medical power of attorney. Everyone should have this done (free as an online form for each state) as soon as their child hits 18. Otherwise, they have zero legal connection to you. We found it startling that, so far, many caregivers have explained that their hands are tied and they needed that form. This is best to have over and above the 'release of medical information' form at each healthcare provider because it can stipulate that your dc want you to be able to speak to their medical providers no matter what their health or state of consciousness. Especially if, like us, your dc is out of town when they get care. When ds first went to the urgent clinic, he simply signed his name. Without any release signed, much frustration and a little delay ensued that could have been avoided if I had a medical power of attorney form at home to fax to them.

Well, now that our 'normal' weekend is almost over and treatment begins soon, I am praying for the grace to keep our home a haven by being caring and helpful while providing a loving atmosphere where ds can navigate this difficult step to healing.

Thank you!

[dirty ethel rackham]

I don't have much to add, but I am praying for your family.  My niece (she is 30 years old with a toddler) just finished chemo for lymphoma about 3 months ago and she has no evidence of cancer right now and has a really good prognosis. 

 

I agree with a previous poster about working to help him keep contact with his school friends.  We have a local boy who is home getting treatment for a rare cancer.  His college friends and his old high school friends have set up a facebook page as support for him.  His family has talked about how important that has been for his positive outlook.