Why not?

We have been able to find some fun things to do during our Spring Break. Saturday, Van went and watched the girls play tennis. Usually he is right out there with them and I had to give them strict orders to not let him hit a ball. So he watched and critiqued. We rented quite a few movies from our neighbor (for free) and we've played "Movie Theater". It is where we pop popcorn, make drinks and treats and watch shows together as a family. We went to Provo to see our oldest daughter and her husband. They took the kids to the Dinosaur Museum on BYU campus; we had a wonderful dinner and family night together. A fantastic brother in our ward, videotaped Megan (our 16 year old) performing at her first ballroom dance concert last week. We’ve been watching that and loving it.

We even had a ride on a huge fire truck, went down the fast fire pole, and sprayed the fire hose all because our home teacher and Bishop is the Captain of the fire station. I’ve decided it really isn’t the money you spend for Spring Break activities or the places you go, it’s the memories you make with your children having “wholesome recreational activities”. (The Family: A Proclamation To The World). 



Van went to the hospital today for labs and he is doing so well they couldn’t believe it and sent us home. He has very little nausea or pain these days. He should have a great two weeks. Today, they moved his transplant up two days because of the donor’s schedule which inadvertently means he isn’t backing out. So now he starts pre-transplant on Monday, April 19th. We can’t wait! We are so excited to see the Lord’s hand work in our lives again! A friend brought this quote to our attention: President Boyd K. Packer said, “If you are helpless, he is not. If you are lost, he is not. If you don’t know what to do next, he knows. It would take a miracle, you say? Well, if it takes a miracle, why not?” We fully expect miracles in our lives. With everyone’s faith and prayers they will happen.

Lord, Give Me Experience

Van came home from the hospital today. They gave him only 2 pints of blood because the rest of his counts are starting to come up on their own. We are so excited! This means we should have a wonderful Spring Break with our children. General Conference is this next weekend (our favorite time of the year) and we are so excited to watch it together with our family. We are trying to figure out something we can do as a family each day of our break. It can’t be in a public place with crowds and germs. However, it can be outside if the wind isn’t blowing and all within an hour’s drive of the hospital. As limiting as this may seem, we are putting on our thinking caps in order to find something creative to do each day of the week that Van can participate in.


Friday, April 16th, we have a family conference with the head Doctor to discuss the details of the Stem Cell Transplant. This is where all the family members who will be Van’s care givers come to ask questions and learn what they can expect after transplant. Wednesday, April 21st, Van will be admitted to the LDS Hospital to start the pre-transplant regimen which includes 6 days of full body radiation, 48 hours of chemo and rabbits blood to prepare for a stem cell transplant on Friday, April 30th. The next day Olivia, our daughter will be baptized and confirmed. I’ll expand on this and who will baptize her, in the future.


Van speaking:  Some friends of ours visited today and brought to our attention this quote from Elder Neil A. Maxwell, which is so fitting. “One’s life . . . cannot be both faith-filled and stress-free. . . . Therefore, how can you and I really expect to glide naively through life, as if to say, ‘Lord, give me experience, but not grief, not sorrow, not pain, not opposition, not betrayal, and certainly not to be forsaken. Keep from me, Lord, all those experiences which made Thee what Thou art! Then let me come and dwell with Thee and fully share Thy joy!’ . . . Real faith . . . is required to endure this necessary but painful developmental process.”  

Even the Savior asked that the bitter cup be removed.  But we all know that God in his wisdom, did not remove that bitter cup.   You and I are extremely grateful that it wasn't removed.  I don't know of a single example in the scriptures where the Lord took away someones trials.  But I know of many, many instances where he strengthens individuals so they can better endure -- then through faith and patience they are eventually delivered.   It is my testimony that adversity is the great University of the Lord.  If we are serious about becoming like the Savior, then "BRING IT ON"! 

The New Norm

People ask me all the time, “How is Van doing?”  My reply is great!  I started thinking about that.  The word GREAT is very subjective.  Three months ago when I said "He is doing great" is totally different than at this time.   Now, when I  say he is doing great, he probably has only thrown up once in the last few days, he’s had a blood and platelet transfusion, his white blood cell count is zero so he doesn’t have an immune system and he’s bald and tired all the time.  But he is doing GREAT!  It’s the new norm! 

This afternoon Van had his first fever scare.  I took his temperature and it was 100.6, I called the doctor and they had us come into the outpatient to take more blood cultures (7 bottles of blood).  His temperature was normal when we got here but decided to spike right before we were supposed to leave.  They are worried about infection especially since he doesn’t have an immune system.  So they checked us into Hotel Leukemia.  We even have a view of the Salt Lake Temple.  How cool is that?   

We wanted to thank everyone for their letters, emails, posts and phone calls.  It’s so good to hear from you.  When you post to our blog, we immediately receive it in our inbox.  So we don’t miss any of your comments, we are always kept up-to-date.  I just wanted to remind everyone about the information on the right side of our blog.  You can find information about how to post a comment, how to contact us, and how to be a bone marrow donor.  Thanks so much for your love and support.   

Who's your hero?

In the last few days, Van had a platelet transfusion. He was seeping blood out of his central line because it couldn’t clot. After the transfusion, he was trimming the rose bushes and accidentally brushed a thorn against his face without knowing it. I looked at him and saw blood on his face. He quickly looked in the mirror and said, “Well at least it’s clotting!”. We are always so concerned he could bleed excessively when he has very low platelets. We just laughed and cleaned it up.


We started Neupogen shots that are supposed to help his neutrophils bounce back faster. Some of the side-effects of Neupogen are bone pain and flu like symptoms such as nausea and vomiting. The last time he was on Neupogen he ended up in the hospital with unbearable back pain for three days. This time they told us to stop taking it as soon as we started to feel any bone pain. It only took three shots and Van started to feel bone pain, nausea and threw up last night. He’s been sleeping all day partly because of the anti-nausea medicine he’s taking and partly because his blood counts are at their lowest. It takes 36 hours to get Neupogen out of his system and then he should be feeling a lot better.


We left one of our posters in our hospital room when they discharged us the last time. So they called us and said this poster is waiting for you next time you come for an out-patient visit. This particular poster is of the prophet Nephi and on the bottom it says “Who is your hero?”. The nurse practitioner attending that day asked Van who is this person? Is he your hero? He answered, “Yes, that’s Nephi”. Then she said, “I thought that Nephi was just a little town in Utah.” He then answered, “The town Nephi is named after this person.” He was then able to teach her about the Book of Mormon, which is a record of ancient peoples who lived on this continent and Nephi was a great Prophet among them. Just another missionary opportunity for my amazing missionary!


P.S.  The blood cultures turned out great.

Blood Cultures

Van is doing well considering the fact that his blood counts are dropping in half every other day because of the Chemo. They are taking us one day at a time to make sure that his levels don’t fall too far. Platelets are responsible for clotting in the blood and since they have dropped so far, we have to go back tomorrow and we will probably have to receive more. I LOVE driving back and forth to Salt Lake every day– NOT! I don’t know how commuters that work in Salt Lake do it? But one positive thing is, we get a long talk date every day (in the car).


When we told the Doctor today that Van has been experiencing cold sweats and chills, he decided we needed to do a blood culture. I had no idea what a blood culture was until today.  I have included pictures. Van’s central line has three ports and one of these ports might be harboring infection, so they have to take blood out of each one. These bottles have chemicals in them to begin with and then add 10 cc's or so of blood to each one. They will be tested and results will be back in 24 hours.

They started his Neupogin shots again (it speeds up the white blood cell production). Megan, our 16 year old daughter, is giving him the shots every day because she wants to be a nurse. I (Wendy) would rather not give the shots if I don’t HAVE to. Last time we started these shots, on about day four, he started with horrible bone pain. So the Doctors have been researching and found a few patients that took Clariton and felt it helped. So they started him on it for the last few days to see if there is any truth to it. I LOVE how the Doctors are always researching and trying new things.

Hotel Leukemia

Today was a very busy day. Van started out with an x-ray because the Chemo that he takes orally every day can sometimes cause fluid in the lungs. He’s very weak and they are having him walk so they don’t end up giving him shots in his stomach to keep him from getting clots. So he walked by his wheelchair all the way to x-ray which is on the opposite side of the Hospital. Needless to say, he took the wheel chair back to his room.


For the next week all his blood counts (red blood cells, white blood cells and platelets) will plummet. Today the blood levels got to a critical level so he received two blood transfusions. The first bag of blood was AB- and he is AB+. They assured us that this was ok but just into the second bag of blood he started getting a rash, itching and a few symptoms that were concerning. So they gave him some Benadryl which made him light headed and tired. But it seemed to be working. Van said, “The negative blood doesn’t work for me because I’m such a positive person.” They took his levels again and they were up so they let us leave the hospital for a day and a half. We will go back to the out-patient clinic every other day until they feel comfortable his counts are going up.


The lady next door to us passed away this week and the man on the other side of us coughed all night long, and ended up in ICU this morning. After this, Van said, “I am so thankful for MY Leukemia”.


We were talking to the nurses today trying to figure out how we can reserve a certain room for our 1-2 months stay during transplant time. So this is the question of the day. “How DO you make reservations at Hotel Leukemia?”


Some wonderful and kind people have opened a donation account at Zion’s Bank in Van’s name to help with medical expenses. If interested just call or go into any Zion’s Bank and tell them you would like to make a contribution to the “Van Heder Donation Account”.

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.