Any experience with stem cell transplant from relative?

[Ottakee]

One if my closest friend's son will be getting a stem cell transplant from her daughter in hopes of curing his Sickle cell. They start the process today at University of Chicago and his transplant is April 29 if all goes as planned.

 

She mentioned strict isolation for maybe weeks...some of which she as the mom might not be able to even leave his hospital room.

 

They will be 3 hours from home and her husband will be holding down the fort with their other 5 children.

 

I am looking for ideas in how to support her and the rest of their family during this very stressful time.

 

Meals have been set up. If she can escape his hospital room I would love to try to drive down there and get lunch and a walk in (we normally walk together 4-5 days a week). What else would be helpful?

[FaithManor]

If they can disinfect a computer or a tablet so she can have that in his room, skype, books on audible (these work super duper well on my kindle), soothing music...I would ask if she will be allowed to have a device. If not, find out if the hospital is set up to pipe sound into the room. If so, it might be possible to provide it this way. You'll need to know what format they want.

 

Also, peace of mind...knowing that there are people supporting her husband and helping with the kids will be another biggie. So maybe taking a meal there on a regular basis, offering to do something fun with the kids, being available just to talk, running errands for him, that kind of thing.

[Ottakee]

She will have her tablet/phone, etc in with her. She is a super active person so sitting for hours is hard let alone days and weeks.

 

Meals are set up for the family for the next 8 weeks. I figure dh and our boys can go now their lawn. There is still her dh and 3 boys home but it would be one less thing to worry about.

 

I would love to send a care package but not sure what would even be allowed in.

[cjzimmer1]

Agreeing with others on helping with non food tasks at home. I obviously don't know this husband but while my husband CAN hold down the fort, it stresses him out.  He's not using to managing the chores and the kids.  Having someone come in and run laundry and fold the clothes would be helpful, Someone coming in and cleaning the house just so he doesn't have to think about.  For the friend herself, since she will have a tablet.  Call or skype regularly so she has someone to talk/vent to.Check in on her family regularly and let her know how well they are coping.  It's helpful to hear from some else that the family is surviving in her absence.Offer to run errands/shop for husband, get a list of preferred products from mom (in advance if you can) and keep dad stocked in soap, shampoo, toothpaste, toilet paper etc.

[Ottakee]

Thanks for the ideas. I am trying to send her one Bible verse a day as I know she appreciates that.

 

Yesterday she did calle and ask me to go fix the horse fence that was down in one area. Her 16 year old daughter doesn't know how and obviously she can't. Dh and I went over there and in 10 minutes it was all fixed and electrified again. She said that was a huge help.

 

Right now her son can have visitors so I might go down with my DS and let the 2 boys visit for an hour while her and I go to another room to chat or take a short walk if she is allowed to leave that floor. It is a 3 hour drive each way but worth it if it works out.

[Pippen]

I had an immediate family member who had a stem cell transplant at that facility. Anything you can do to help hold down the fort at home will be appreciated--meals, errands, laundry, mowing. Knowing others are caring for her family when she's not able to is one of the biggest helps you and friends can be for her right now. 

 

She will likely be allowed to leave the floor at any time, but most caretakers do so sparingly to avoid contact with sick people. If she will have a car up there, she needs to check how many days it can be parked until she needs to move it to get the prepaid patient parking rate. It's important that the vehicle exit the parking deck every X number of days (I think it's 6) as it will mean the difference between something like $6/day vs. $18/day.

 

It's a long walk from a room to the parking deck, so she should have a wheeled tote to haul laundry and other stuff back and forth between room and car. Also between the room and the family shower.

 

You can send in about anything in for a care package, but avoid homemade foods as the son won't be able to have those and he will be craving non-hospital food when he has an appetite. Small quantities of a variety of individually wrapped snacks were helpful to have on hand, as well as water bottles.

 

Be sure and check on visiting guidelines in advance of any trip. Kids under 12 weren't permitted in the unit where my family member was.

 

Amazon Prime if they don't already have it is awesome. It gives free delivery on many items (including to the hospital), plus streaming movies while at the there to help alleviate boredom. Will be handy at home also while their lives are disrupted.

 

Her son will be hooked up to IV's 24/7 for a number of days, which require a hospital gown for access. My family member was DESPERATE to get back into his own clothes so my mom made him a week's worth of tshirts with snaps:

http://www.ebay.com/itm/Rotator-cuff-tear-post-surgery-t-shirt-for-comfort-mobility-REHAB-and-work-/321838223249?var=&hash=item4aef0d8f91:i:321838223249

 

Noise cancelling headphones for both myself and family member were a huge help to block out hospital sounds, plus give us each a sense of privacy when we were cooped up together for weeks. 

 

Plastic keyboard cover for son if he uses a laptop--very handy to protect the laptop during times of nausea. 

A fleece blanket plus a spare to use while the other is being washed

Expandable file to keep hospital paperwork in. There will be a lot!

 

If funds are tight, these would be helpful:

Cash

Visa-type gift cards (make sure they aren't types that require registration--one we got required a social security number to activate)

Gift card to the pharmacy they will use up there (since he'll probably be released to stay nearby once blood counts recover). Walgreens is nearby.

Gas cards. Once released they'll be making trips back at least once a week for awhile

 

 

 

Edited April 21, 2016 by Pippen

[Ottakee]

Pippen thanks for the ideas. I will ask her about some of those specifically.