Yummy Concoctions

You know someone has been in the hospital too long when they dream about new concoctions they can create using the hospital low microbial diet menu items to make something yummy. The newest creation is a jello salad. Van ordered two orange jellos, whip topping and mandarin oranges to mix together for a wonderful jello salad tonight. He’s figured out three other things like homemade burritos, hot fudge sundae, cheese fries and who knows what else he’ll think up. I think it is time to go home.


We also found out a few things about our Donor. He has A+ blood and Van has AB+ blood which will be easy to transfer. He is in his thirties, male and lives in the United States. After the transplant the recipient of the new stem cells could possibly take on some of the same characteristics of the donor. Such as - hair line, hair color and texture or the lack thereof. So we are hoping for someone straight out of GQ magazine.


We are still in the hospital because the Methotrexate levels dropped from yesterday which was 0.08 to a 0.03 and they have to be 0.02 before they will let us go home. Yesterday, his levels actually went up which was weird. So hopefully tomorrow they will be low enough to go home. He is feeling extremely well and is ready to conquer the world. But his blood counts will continue to drop for the next week before they starts bouncing back, so his days of feeling good could be short lived.

Sharp Needles

It’s Sunday and a day of rest but the Doctor said that if Van doesn’t take at least three walks today and exercise then they will start giving him shots.  (The shots prevent blood clots).  The moral of the story is that sharp needles are a great motivator. 

The amount of Methotrexate in his blood should be going down each day.  They went down for two days but today they jumped to five times what they were previously.  They couldn’t believe it so they took blood samples again and now he’s at .08 just a little higher than the day before.  We have to be .02 before we can go home.  We were hoping to go home tomorrow but it probably won’t happen.

There is a patient next door to us that is dying.  There are a lot of tears from loved ones saying their last good-byes.  It’s so sad but , “we will not go softly into that good night”. 

2nd Round of Chemo is OVER!

We just finished the second round of Chemo.  Van wasn’t able to eat or drink anything for three days but tonight he was finally able to keep down some clam chowder and crackers.  We’ve worked through a lot of problems today but he seems to be improving tonight.Now we are waiting for the Chemo to leave his body before we can come home.

 I went home to help Van’s parents move in to our home permanently for the next year or so.   We cleaned out the office, closet, and bathroom to accommodate them.  We are so grateful for their help.  (They have lived with us most of the last two months.)  Whenever I need to go home a family member always comes to stay with Van.  This time my parents came from Idaho and took turns while the other one helped me at home.   We are so blessed to have two wonderful sets of parents that are more than willing to help us with anything.                                                 

I’m so excited for Sunday.  We just found the talk - Fundamental Premises of Our Faith - Talk Given by Elder Dallin H. Oaks at Harvard Law School.  We are really excited to read it together.  If you are interested just google it, it’s that easy. 

JOY in the Journey

The Doctors started Cytarabine (another Chemo) today. It can have neurological side effects so they do tests on him like you would a drunk driver. Touch his nose, touch all his fingers in sequence, rehearse the alphabet, etc. but he doesn’t have to walk a straight line because he is on lots of anti-nausea drugs that make him woosy anyway. The last Chemo could possibly make really bad mouth and throat sores. So to prevent this, he swishes with salt water every few hours, keeps his mouth moist (drinks and popsicles) and brushes his teeth really well. The last Chemo also kills your liver or kidneys. So they will wait 12 more hours and then give him Leucovorin to rescue his liver or kidneys. I hope all this is correct but if not, it’s really close. Another side-effect is the problem he could develop in the eyes, so they give him eye drops four times a day. He has a fungas on his feet. He also has Vancomycin-resistant Enterococcus type of bacteria that doesn’t respond to the usual anti-biodics but they are treating it with vancomycin anti-biodic to see if that will work (I don’t really understand this problem but that is what the paper says).

Van has been asleep most of the day and when he wakes up, it is just to take more nausea medicine. I think it’s better to be asleep than feel the awful feelings that go along with Chemo, don’t you? My neighbor in the next room gave us this quote, “No matter where the body is, the mind is free to go elsewhere!” I told that to Van today and said to remember our Cancun trip which was all-expenses paid for seven days and nights (19 years ago). He smiled and went to sleep. I loved that trip because he spoke Spanish and helped a lot of Americans.


We are hoping to come home from the hospital Sunday but I’m not holding my breath. I’m just going to enjoy the journey because that is what we have embarked on. We might as well find JOY in our journey.

Code Red

This afternoon I walked out of our room and looked across the hall to see a person from house keeping cleaning the walls with a mop. I remember thinking how great knowing that our room had been cleaned that way and was totally sterile. Within seconds a big noise started and the cleaning people came running out of that room drenched. The fire sprinkler in the ceiling went off and water was gushing out of the room. A code red was called and they shut the door but it filled the hall 4-5 inches deep and started seeping underneath our door. They piled every blanket, sheet, and towel they could find to channel the flood. It was very dirty water that had been sitting in the pipes for a long time so we were evacuated to the out-patient side of the East wing because of the possible exposure to bacteria. Our friend Melanie Balls and her Mother Peggy were our neighbors so we all went to a large room and hung out for four hours. We’ve been moved to room E804.


Today they gave Van a two hour booster dose of high concentrate Methotrexate (Chemo) and then put him on a lower dose over the next 22 hours. So far so good, nausea hasn’t been overwhelming. We’ll see what tomorrow brings. 

Methotrexate (Chemo) goes in yellow the color of Mountain Dew and comes out a beautiful color green.  
I think he's getting ready for St. Patricks Day. 

Van hanging out in a temporary room while firefighters are coming to the call and cleaning up the flood.

Round 2

We’re back in the Hospital after having a wonderful week at home. After being in the Hospital for almost two months, we can truly say “there is no place like home”. Van has been getting stronger and stronger every day—so much so, that he was finally able to get back to Presidency Meeting on Sunday morning. He was so excited to finally be with the Brethren again.  Also, this last Friday, since Van can’t go out to public restaurants, Members of the ward provided a romantic dinner date at one of their homes, with bowling and a movie (the bowling was on the Wii and the movie was in their home theatre.)  They sanitized everything in the house and then took their whole family to Salt Lake—leaving the entire house to us. That was so creative and thoughtful. We have just been overwhelmed by the love shown and service rendered by members of this Church (The Gospel in action). Thank you all so much.

We arrived at the hospital at 9:00 this morning after all the lab work and blood tests they admitted us.  We are in room 810 in the East wing.  We are here for the second round of Chemo which will probably take a week.  They were going to start today but instead they decided to put in a central line in Van’s chest.  A central line is a catheter placed into an internal jugular vein in the neck which tunnels over the clavicle, underneath the skin and exits out of his chest.  It has three ports and is used to administer medication.  It’s more safe and more accessible than a pic line which he has had for the past 2 ½ months.  All this set us back quite a few hours so instead of starting the Chemo today,  they will start hydrating him at 6:00 am and start chemo at 11:00 tomorrow.  So tonight we are going to eat, drink and be merry, for tomorrow  . . .

  Van has a triple port Central Line

It’s a TRUE BLUE Miracle!

The only PERFECT bone marrow match in the entire world came through for us today!
We are so EXCITED and THANKFUL!

I know it was all because of the cherry trees. Van has always planted fruit trees wherever we’ve lived. His favorite fruit of all time is fresh Bing cherries. The counsel has been when you have a health situation like ours where life expectancy is minimal, to go on a cruise or do something together and take advantage of the time you have. We are passed that because we can’t even go to a restaurant. (Because of the germs, etc). Instead, planting fruit trees became that meaningful substantive exercise to celebrate life and hope. I wanted to show Van that I had faith that he would live and be able to eat the fruit.


Like President Kimball said, “Go ahead and plant your cherry trees”. So we exercised faith and bought cherry trees. “Dispute not because ye see not, for ye receive no witness until after the trial of your faith.” (Ether 12:6) Within a day of purchasing the trees and digging the holes, we discovered we had a PERFECT match. The Priests in our ward dug the holes and my Visiting Teacher is planting them.


We are looking at the end of April for the transplant. We go into the hospital next Tuesday for round two of Chemo. We will be there for 1-2 weeks. Then we come home to recover for a week. April 5th (right after General Conference) we will start all the preliminary work-ups for the transplant. All this will be out-patient seeing Doctors about Van’s heart, lungs, taking a ton of blood work, etc. to make sure he is ready for transplant. Then in the middle of April we will check into the hospital to start six days of full-body radiation, 2 full-days of Chemo (the REALLY bad stuff), and then one day of rabbits blood to help him accept the new stem cells. The day of transplant becomes his new birthday and we have a birthday party and it starts with day 0. Every day after his transplant is called day 1 or day 2, etc.


Now let’s pray that there are no hiccups along the way and that this person follows through and his blood is free from problems. This truly was our only hope. Even the cord blood bank didn’t have a perfect match and the siblings weren’t a match either. How would it be to be the only one on the entire planet that could save someone’s life? This is really a TRUE BLUE MIRACLE! Thanks for everyone’s faith and prayers.