“From a certain point of view our real enemy, the true troublemaker, is inside.” (14th Dali Lama Tenzin Gyatso)

The direct Coombs test is positive.  Wayne has autoimmune hemolytic anemia (AIHA). Or, in words we can understand, his immune system is attacking and destroying his red blood cells (RBC’s) which leads to extreme anemia.  He really, really knows the meaning of being exhausted. A positive direct Coombs test can visually indicate that antibodies (and/or compliment proteins) have become bound to the surface of the RBC’s.  It is these antibodies and proteins that cause the RBC’s to rupture.  Thus the need for blood transfusions.  Ok, so that is not a good thing.                                                                   Here is the good thing.  The hemolysis (destruction of Wayne’s RBC’s) lasts about 5-10 days and gradually subsides as his residual incompatible RBC’s are lysed, destroyed and replaced by transfused group O cells, or RBC’s of donor type produced by engrafting stem cells.  Further antibody production should stop.  It could be a scary 5-10 days, but hey, he is half way there!!!! And of course, we just happen to be in a place that has blood to spare.

***Gifts***

For many of us, today is a day of celebration. The celebration of a great gift, a gift that started out small and spread to others. A gift for mankind. I believe it is the celebration of the first donor. The first documented case of sharing something of yourself, for the good of someone else. Here we are today, because someone was generous enough to give something of himself, a gift of his stem cells, to Wayne. Here we are today, because you all have given your gifts of love, support and prayers,  which have sustained Wayne. These too, are the gifts that make life worth living. Here we are today, to sing your praises. We have been awed by the many, many, many kindness given. This ordeal is made easier with your help and generosity. Thank you for making this journey possible and for being such great traveling companions. YOUR presence is the best present.                                                                                             May your life be filled with never ending gifts given from the heart. Have a Memorable Merry Christmas,                                                                                                            Wayne and  Peeches

..not a Creature was stirring, not even a……

Wayne!   He has taken this ‘not stirring” a bit far,  And yes, “he” does know when you are sleeping, but let’s face it, 3 days of laying around is a bit much!  I mean he doesn’t know when you are awake.  No one does.  Enough is enough!! “I sprang him from bed to see what was the matter. To the emergency room, to hospital we flew.  More rapid than eagles, the doctors they came.  Fluids, blood products, CT scan and more.  The medical team wondered what was to blame.  Anemic, anemic they shouted and swore.”                                                                          Anemic, how can this be, why on Tuesday he had the best labs yet.  The kidneys were working, the blood constantly improving looked good, his electrolytes were in the normal range.  So how,  after a few days could he be so anemic that in the first 24 hours of hospitalization he has been given 6 units of red blood cells?  Good question, and the doctors are running every kind of test to figure out why. The good news is, that he does not appear to be bleeding internally. So just where is all that blood going?  Apparently, like the man in the story, “down the chimney St. Nicholas came with a bound”.   Wayne’s red blood cells are here one minute and then soon not to be found (this is called hemolysis).  Why, how come, what’s the cause?  The medical team is trying to figure this out.  In the meantime –  I’m waiting for big man in red, he knows everything!!!!!!                                  But I heard Wayne exclaim, in spite of his plight,  “Happy Christmas to all, and to all a good night!”

 

Pain in the neck

Wayne woke up yesterday with a pain in his neck.  Not surprising, I think to myself.  “You fall asleep at the drop of a hat, you lay in the craziest positions, you probably slept wrong, and now you’ve a pain in the neck.”  Sounds plausible, right?  So  I quickly dawn my sleuthing cape and what do I do, TOUCH IT.  And in response, my sweet husband quickly slaps my hand away and looks at me as if I am Cruella Deville.  However, like a dog with a bone, I will not let it alone.  A quick call to the clinic to tell them what I suspect and we are headed to the hospital.  (I should have this on speed dial by now).    So indeed, Wayne does have a pain in the neck or rather a blood clot in his neck.  Today, bright and early we were back at Huntsman to have his central line, his 3 port Hickman catheter taken out.  The clot is not at the catheter site but about 2 inches above.  Now he has been started on anticoagulant therapy to dissolve the clot.  The good news – no more central line.  He does not have to wear GLAD Press and Seal when he showers and can get wet. The bad news, because he is slow to clot and bruises easily,  I must handle him with kid gloves to avoid being brought up on abuse charges.

Where’s Waldo?

You know how when you run into someone who has changed, you can be caught off guard, you stammer “Sorry, I didn’t recognize you”.  Below is a brief description to give you a quick heads up and preview:                                                                             General appearance:  Looks like he is wearing hand-me-downs from Shaquille O’Neal Height: 5 feet 8.5 inches –  He has lost an inch, most likely a result of poor nutrition, all the medications put patients at risk for osteoporosis. Hey in my world – he is a giant!      Weight: He is weighing in now as a Welterweight at 152 pounds.  He is up 9 pounds from a month ago. Way to go!! Goal weight per doctors=175, this will be pre-marital weight, which lasted until he said “I-do”                                                                                        Hair: can be detected with close, very close, examination.  Color undeterminable. He does, however, grow face stubble in 2 days and of course, the dreaded nose and ear hair is growing.  Incredible!                                                                                                      Eyes:  When open, bright and shinny and showing signs of the real life.                     Hands: nails are all falling off and show signs of having had a manicure- I am running a spa Sense of humor -FULLY RECOGNIZABLE – Aren’t we lucky!

It is a great piece of skill to know how to guide your luck even while waiting for it….(Balastair Gracian)

This is the best description of the high level of scientific reasoning behind weaning transplant patients  from the immune suppression drugs. Skillfully guiding your luck while waiting for your luck. For the first 100 days Wayne was taking drugs to stop, not suppress, but  stop, his immune system from producing or working properly.  This gives the transplant a chance to take hold and feel like it is in charge – what the body doesn’t know, won’t hurt it, right?  (This explains in part, why he did not have the usual signs a person would have who presents with a necrotic gallbladder and contributed to the difficulty of diagnosing. Most of us would have been really sick, present with a fever, possibly develop an abscess or become septic, but because his body could not mount it’s normal response, the gallbladder problem was not identified as quickly or easily.)

Now it is time for the body to start to produce it’s own immune system and antibodies, but we want to go slow and steady, so Wayne can win the race.  For the next 3 1/2 months Wayne will slowly decrease his dose every week for the next 6 weeks. After that, the dose will be cut down every other week, until his immune system is fully functional. Because Wayne had his immune system wiped out,  he no longer has the benefit of his childhood immunizations. Wayne will need to start the immunization schedule, as if he were a newborn child. So until he has been caught up with his immunizations he will still have to be careful, avoid exposure to illness and continue good hand washing, all the precautions you would take with a baby.

…….So now what

You start off slow.                                                                                                                    slow taper off meds – his medication count is down to 18  a day.                                                                                                   slow introduction to dairy (1 tablespoon every 2 days)                                                      slow introduction to fresh fruits and veggies.  He still cannot go out to eat and should avoid take- out.                                                                                                                           slow, slowly, work at gaining back his muscle.  Physical Therapy is now scheduled 3 times a week At least that’s the plan.                                                                                          slow wean off the IV electrolytes and fluids.  Of course, how fast this occurs will depend on how much he can eat and drink (which right now isn’t very much) and how he tolerates the oral supplements.                                                                                                               slow “meet and greet” a few people at a time -still no crowded places, no going shopping (he can’t stop crying about that). No church – not even on Christmas. The same rules, GOOD HANDWASHING, no one who is sick or has been exposed to someone who is ill, and no visiting if you just had a live vaccine.                                                                        He can go outside without a mask –  if the wind isn’t blowing.                                            He can be around our grandchildren – provided they are not sick or have been exposed to someone sick.  I guess they will be about 16 years old before we can get them all together.                                                                             Can he drive?  Only if there were no other cars or people within a two mile radius, I mean the thought of Wayne driving while he still has these tremors would scare you to death.  NO HE CAN NOT YET DRIVE                                                                                               Can he go to work?   Once he is off the IV fluids and he has more control over the tremors he can start back slow.          

These are words Wayne needs to live by for now  “Wisely, and slow. They stumble that run fast.” (William Shakespeare)

Oh Happy Day – 100% awesome news

Oh Happy Day                                                                                                                        Oh Happy Day                                                                                                                      Oh happy, happy day                                                                                                      When Wayne heard what was said                                                                                 When the doctor said                                                                                                             The transplant lab report read                                                                                                 The donor cells washed away                                                                                               all the bad                                                                                                                                                                                Oh happy day!                                                                                                                                   You wished him to be ok                                                                                                    And constantly prayed                                                                                                      Night and day                                                                                                                   Night and day                                                                                                                    We’ll never find a way                                                                                                            to truly thank you for this day                                                                                               this happy, happy day!!

100% engraftment in both bone marrow and blood.  Wayne’s bone marrow, yes his new bone marrow is 100% donor. All of his blood cells are identical to the donors.  He has a new lease on life. All of YOUR work, the well wishes, positive thoughts, prayers and love worked!  We will be eternally indebted to all of you!

Only 21 Shopping Days- Gift ideas for the Bone Marrow Transplant, Cancer and Immune Suppressed Patient

Most BMT patients will get a tremor from the medications they have to take. Wayne has the distinction of being the patient with the worse tremors that the BMT docs have ever seen.  (In fact, they called in the neurology team to be sure there was nothing else going on.) The gift ideas below come from my experience and are based on the average patient.

Straws:  for people who have tremors, holding a glass without spilling is hard. Make sure there is supply on hand.

Qtips (cotton tip applicators): chemo causes a person’s skin to shed.  Qtips help remove the dead skin from those hard to reach spots.

Glad Press and Seal:  Product works best for a person to cover central lines for bathing. Hospital does not supply, patient must bring to hospital when admitted.

Disposable Hand towels: good hand washing technique requires drying hands on individual single use disposable hand towels – lots of hand towels will be used.

Liquid Antibacterial Hand soap:  Good hand washing is the most important line of defense against infection – the Arch Enemy!

Foam tape:  skin becomes fragile and sensitive after repeated dressing changes.  Foam tape is gentle, peels off easily,  yet is strong enough to hold the protective covering used for line care when bathing. (Cost = $7.00 medical supply house.)

Soap “Avenno Skin Relief”: This soap is gentle for persons who have had chemo. Patients must bring their own soap to hospital. Bar soap is especially hard on patients skin.

Socks: Short socks a person can sleep in.

Sleeping Hat: Not a heavy stocking cap, a lighter fleece hat works well when sleeping.

Thank you cards: the person will have many to send.

Stamps: to mail the many thank you cards the person needs to send.

Pressure Sore Donut: losing all that weight, the person is just bound to have pressure sores. Hopefully this will take some of the pressure off!

Small card wallet: to keep all the contact doctor/medical team cards together and handy.

Vanicream Lotion:  Chemo and other treatment drugs will dry out their skin.  Vanicream lotion is the only lotion recommended by dermatologists at the University of Utah BMT. This lotion is not available in the hospital. Vanicream can be found at Rite-Aid or Walgreens. The patient will need to bring it to the hospital and also use it once they are home. (Don’t believe the hospital staff, the lotion they have in house is not as good.)

Designer cover-up: In other words, adult bibs. People with tremors have difficulty eating,so to assure that they don’t wear their food, put a cover-up on. (For more information contact Peeches.)

Pajama shirt-button all the way down:  makes accessing the central line easy.

Germicidal Wipes and Clorax wipes:  everything touched by other people will need to be cleaned/wiped that comes into contact with the patient. Bathroom fixtures etc.

Sun umbrella with a clip: people who have undergone a lot of chemo have sensitivity to sun. The clip will allow the person to put the umbrella on a chair or such.

Gift card for the hospital restaurant: person will have lots of clinic appointments and they can grab a bite to eat.

Cavilion Skin Barrier:  This provides a barrier between the skin and anything that has adhesive. Cancer patients will have many dressing changes and a lot of tape, this helps to protect their fragile skin. We have tried other brands but “Cavilion No Sting Barrier Film Wipes” work best and are alcohol free. (Cost $22.50 Medical Supply house.)

Electric Toothbrush/Water Pik

Digital Thermometer: This will make the caregivers job much easier. Temps are taken  routinely every morning and night, much more often if there is a change or concern. (Cost $40.00 @ Cosco.)

Massage: Just imagine how sore your muscles can get laying in bed for extended periods. Contact the hospital that person is being treated at to obtain names of  massage therapists, this will assure that the therapist is familiar with the restrictions that these patients have.

Manicure:  No way do you want a person with tremors cutting their own nails.  Of course the manicurist will have to have a flu shot and follow all the other restrictions. What about a pedicure?

I hope this list will help you when shopping for that special person.  My wish is that you never have anyone on your shopping list that needs this stuff.