Prayer Requests for the Anonymous

At Christmastime, two college-age siblings from our church asked what they could do to help.  I told them they could visit bethematch.org and register to be bone marrow donors.  I challenged them to ask five friends each to do the same.  Their mother sent a card this week in which she told us that Jim and Sarah are each organizing “Be the Match” campaigns at their respective schools!  Let’s pray that their campaigns are successful and that many people are helped by their efforts.  God bless Jim, Sarah, and all donors everywhere!

Our patient-care class on Thursday was to have been attended by two other patients.  Please pray for the one who could not attend because he/she had to be hospitalized.  And, even more sadly, for the one who was not permitted to attend the class because he/she did not have a support person to accompany and support him/her.  That anonymous person is haunting my thoughts.  Thank God our family feels extremely supported through this ordeal.  Many prayers are needed for those who do not have the blessing of loving care.

Pray that Jeff’s mystery woman stays well and safe, that she knows we are thinking of her and appreciating her generosity, and that one day next year we will meet her so that we can embrace her and tell her these things face to face.

The Longest 100 Days

Kerry, Judy, Jeff and I attended the mandatory pre-transplant patient care class on Thursday.  In addition to fixing Jeff’s admission date (May 8^th), we learned a lot about minimizing exposure to bacteria in the first 100 days post-transplant.  Here’s a fraction of what each of us learned:

Amy - Jeff has to rebuild his immune system post-transplant.  He will need to get all his childhood vaccinations again.  We need to train Giblet not to sleep in our bed.

Kerry – was glad to hear his dad can eat home-cooked meals as long as they are thoroughly cooked and then eaten or frozen immediately.

Judy – was horrified at the care that must be taken in feeding Jeff post-transplant.  All the Dos and Don’ts are overwhelming. 

Jeff learned a lot:
1.  “They must be wrong about the no-grilling rule.”
2.  He learned that he is not allowed to clean or do dishes post-transplant.  He says, “I always thought doing housework could kill you.”  (Amy notes that he is, however, allowed to empty the dishwasher of clean dishes.)
3.  He is disappointed he won’t be able to swim this summer.  He’ll have to stay out of the sun and he’ll have PIC lines that will need to be kept clean.
4.  He will definitely have to wear a mask at the wedding.  We will draw a mustache on one.  He wants an assortment.  For example one will have a smile, one will have a surprised O… 
5.  100 days is a long time to go without a restaurant meal.
6.  It takes three hours to clean the hospital room on transplant day (Friday, May 13^th, his new birthday).
7.  We have to pack his clothes in zip-lock bags so they can be wiped down.  It will be like packing for camp!

Before we left Penn, Jeff saw an ophthalmologist about his vision issues.   The diagnosis was ocular migraines with no headache brought on by stress.  No treatment required.  Woohoo!

We had a tour of the transplant floor.  There are 29 beds.  Many have great city views although a few look out to a brick wall.  There are wood-look floors and some wood paneling so Jeff might not suffer the same sensory deprivation that he did at Aria. 

It was a looong day.  We got home at 5:30 p.m. and found our Dinner Club friends in the driveway delivering dinner!  God Bless George and Charlotte!

Today Jeff was back at Penn for a biopsy of his skin rash.  The dermatologist felt it was some sort of eczema and was not cancer-related.  He still needs to see the oncology radiologist next week.  

Prayers, please, for Jeff's 35-year-old mystery woman, his donor.  Also, pray that Jeff continues to gain strength with these extra couple of weeks prior to his May 8th admission.

A Princely Sum

The bill for Jeff's hospital stay came.  It was 20 pages long.  Jeff say we can't really call that a bill, "It's a William."  

Thank God for good insurance.

Pre-transplant Plumping

In an effort to put pounds on, Jeff selected his favorite high-calorie foods for his pre-transplant plumping plan.  We accomplished a lot this weekend:

Friday:  Egg McMuffins for breakfast, Peruvian-Mexican Cuisine for dinner

Saturday:  Greasy-spoon breakfast, doughnuts for lunch, Chinese for dinner

(Thank goodness for the fruit basket that Kim’s boss sent.)

Sunday:  Fritz’s cinnamon rolls and sticky buns for breakfast, Chinese leftovers for lunch, our neighbor’s mac and cheese for dinner

Results since home from hospital:  Jeff up 10 pounds, Amy up 5

Amy plans on returning to the pre-wedding diet once Jeff is hospitalized.

What Not to Say

A friend, a cancer survivor, from Amy's work shared this article.  We found it interesting and it might be helpful if you are someone who truly doesn't know what to say.  (That would have been me before experiencing this role of caregiver.)  In addition to the tips in the article we would add that it is okay to say, "I don't know what to say."
http://www.dallasnews.com/health/cancer/headlines/20110404-what-not-to-say-to-a-cancer-patient.ece?ssimg=155662#ssStory155663

Egg-cellent News!

Last Wednesday Jeff had another bone marrow biopsy.  The results were not perfect but good enough to proceed with plans for a bone marrow-stem cell transplant Easter week or in early May.  We will find out by early next week how soon the donor can be prepped.

Today we met Joanne, Dr. Porter’s coordinator of non-related matches, who has been working on selecting the best donor out of the four potential ones.  She alone knows the identity of Jeff’s donor.  We were allowed to learn only two things about the donor:  it is a 35-year-old female.  I haven’t been crying excessively lately but somehow hearing even those two minimal details about the donor brought tears instantly, joyfully to my eyes.  We can write to her anonymously – and she to us - through Joanne during the first year after which we can know her identity, if she agrees.

Dr. Porter once again outlined the steps toward transplant and the transplant itself.  Jeff expressed his concern that the chemo and radiation would be as bad as what he experienced in March.  Dr. Porter candidly said, “It’s worse.”  He encouraged Jeff to put on weight and build his activity level.  Basically, it’s as if he’s in training.

We also met Jackie, the nurse who schedules the patient care classes.  She treated us a little like VIPs, giving us tips and telling us what we will be learning in class.  The class is mandatory prior to transplant. 

Jeff asked Joanne whether we could have requested to know two different details about the donor like 1) age and 2) can he/she dance?  Joanne doesn’t know whether the donor is a dancer.  Perhaps we can ask that in our first letter to her. 

Typhlitis Belly Report:  down to 40” from 44”, normally 38”

Weight: lost 25 pounds during hospital stay, 5 pounds gained back so far

Prayer request:  for our lovely 35-year-old female donor