Monday, April 28, 2014

Bone Marrow Donors - Always Looking for More

There have been quite a few people asking about Tiffany's bone marrow transplant that we are working towards.  Many of the questions are these...

  • Have the doctors found a match for Tiffany? Are her siblings a good match?
  • How do I sign up to be tested?
  • What is the process?

Has a Donor been found for Tiffany?

At this time we are still waiting to hear back if Tiffany has a match.  Her four siblings have all taken the test and unfortunately, none of them are a match.  Each had a 25% chance to be a match, but no such luck.  We were told there were some possible matches in the 'system', but those individuals  need to be contacted and if possible, and if willing, come in for additional tests.  We expect to hear back soon whether or not these individuals are still able and willing to donate.   Some reasons why they may not be could include:

  • Age - they defer to younger peoples donations, preferring ages 18-44 - though you can donate up to age 60.  They don't mean to discriminate based on age, but the older the donor, the more complications that exist for both the donor and the recipient.  In reviewing the registry, some of the matches may have been tested 10 to 15 years ago, and now their age may become an issue.
  • Contact Information - People move, change phone numbers, etc.  They may be a perfect match, but if contact information is not available any longer, they can't even be contacted to see if they would be willing to help.
  • Willingness - somebody may have signed up to see if they could help a friend, but aren't as willing to do it for some stranger.  We think, though, that this is a small minority of people.  We think that most people that get tested, most know that they are unlikely to be the match to their friend/loved one, but could help out somebody else who needs their bone marrow.

How Do I Sign Up to be Tested?

This one is easy.  Go to and sign up or simply click here.  They are looking for donors as well as donations.  It costs about $100 for every person that signs up, that covers the materials, postage, and actual testing.  Testing is free, but any donation you can give can help the cause.

What is the process if I am selected to become a Donor?

There are two types of donation - most common now is the PBSC (Peripheral Blood Stem Cell) donation and if needed, the bone marrow donation.  Thanks to continued study and technology, the PBSC method is a very non-invasive method of donating blood.  See below for details, from

  • PBSC donation is a nonsurgical procedure and the most common way to donate. For 5 days leading up to donation, you will be given injections of a drug called filgrastim to increase the number of cells in your bloodstream that are used for transplant. Some of your blood is then removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to you through the other arm.
  • Bone marrow donation is a surgical, usually outpatient procedure. You will receive anesthesia and feel no pain during the donation. Doctors use a needle to withdraw liquid marrow from the back of your pelvic bone. To learn more, watch the marrow donation video.
After the PBSC donation they would give it to the recipient through a process similar to a blood transfusion.  Once the cells are in the blood stream, they find their way to the bone marrow and set up shop to create new blood cells and a new immunity.  

There is no cost to a donor - all costs will be taken care of by the recipients insurance or through the BeTheMatch foundation.  Of course, you also do not get paid.  You will not be reimbursed for your time and they suggest with all the test and prep work, there could be as much as 20 hours needed over the course of 4-6 weeks, though most of that would be the week leading up the donation and the donation itself.  But the hope is, saving someone's life is worth a little time out of yours.

Status of Tiffany's Bone Marrow Transplant

The Doctors and staff at Huntsman are doing preliminary work for the bone marrow transplant.  Obviously finding a donor is key.  But just as important is receiving insurance approval.  As much as I wish I were Bill Gates, we do not have his resources and hence need insurance to cover the bill.  We are sure things will move forward, but the insurance company wants a ton of information before they give their approval.  We are hoping and praying this won't take too much longer, but additional prayers along that path may help it forward.  Once we have approval and found a donor, we will need to wait for the current chemo treatment to finish.  That too is key, to get all the cancer in her body killed before we replace her bone marrow so that it doesn't come back and wipe away the benefit of having a new immune system. 

If you have questions on the process - feel free to ask in the comments below - we will see if we can find out the answers for you!



Sunday, April 27, 2014

It's Not Everyday You Get Something This Fun

How poor are they who have not patience!  What wound did ever heal but by degrees.
~William Shakespeare

We left Huntsman with an uncanny feeling that things are going to be alright.  Leaving the facility, you get to drive out of what is one of the best views of the Salt Lake Valley.  You get a sense of how vast this world is, how small you really are, and a hope that you can take it all in before it's time to go. 

We had been up there all day.  We left home right after the kids left for school in the morning and arrived back home 9 hours later.  And what's funny is that you really can't say it was much different from many of our other visits to the hospital.  Actually, that's not true.  Lately, our visits have become pretty standard visits - mostly checkups and chemo infusions.  Since I last wrote (and yes, I know it has been two months since I last wrote - sorry for those that continue to get after me to write more often - but life has been busy lately), things have changed, mostly for the better.

We have now gone through three rounds of Chemo.  The first one was difficult, as blood counts initially dropped and platelets also became an issue.  It seemed we were up at Huntsman every day for two weeks straight, with low blood counts and pain which caused worry and stress.  But then the sun started to rise from the dark night and we caught our first glimpse of hope.  No, actually, of Joy!  On the third week after her first round, Tiffany's blood counts started to improve on their own!  And since then - she has not needed any more blood transfusions and this week her red blood counts have risen to the 11's!  (see earlier post which describes the numbers - but suffice it to say, this is really, really good news for her, and all of us!)

The second and third rounds really became just a time of adjustment, but not of worry.  Each round she starts with a drop in blood counts due to the treatment, goes through a period of feeling, well, blah.  Then her white count drops and she becomes more susceptible to infection for a few days, and the last week before the next round, becomes her good week, feeling like a champ and acting like it as well (she starts shopping, trying to help around the house, tries to take some of the car pools from the good people who have been graciously getting our kids to school, etc).

But then this last week, something started to change.  She had decided to go to Emma's maturation discussion at school and be with her daughter and to try to make the time special, decided to take her shopping afterwords.  Upon coming home, she started to feel some pain in her back.  Now, this isn't unusual, she has had a benign tumor in her back that we have known about for a year and a half now, and from time to time it bothers her, often when she does 'too' much.  She then just needs to rest and the pain will go away.  But this time, the pain was coming from a different place in her back, and it didn't seem to be going away with rest.  That following Saturday, she opted to miss an Easter party and stay home because her back was giving her trouble.  She felt that if she could have a day of rest, she could get over the pain and move on.  Easter came and went and it seemed things weren't getting any better.  On Monday, she started getting a pain in her right arm and it started to numb up.  We had called down to Huntsman to see what we should do, and they told us to to take pain meds and come in on our regularly scheduled appointment on Wednesday.  By Wednesday her pain had continued to increase and went to Huntsman to the appointment and planned on starting the fourth round of treatment as scheduled.  The pain was in just one specific part of her back and I was sure that it was a pinched nerve.  Talking to Doctor Glenn, she said it could be, but they needed to do some tests to rule out other things.   Hindsight as it was, Doctor Glenn had a pretty good idea of what it was, and gave us hope by not dashing our thoughts when we asked if it could be a pinched nerve.  An MRI was scheduled for Thursday, and back home we went.  Our good neighbor took Tiffany back up to the University Hospital (next door to Huntsman - Huntsman is part of the Utah University Hospital campus) for the MRI.  It was a long one - they wanted a full scan of her spine and it took a couple of hours to complete.  She came home and we were planning on hearing back from them on Friday of any possible results to it and next steps.

Well... the results came back, but a lot quicker than we thought.  Doctor Glenn had her nurses call us that night, about an hour after Tiffany had returned from getting the scan.  The results...  a tumor.

The tumor, the size a little smaller than a quarter was found pressing upon her spine... the reason for the pain.  The speed in which it had grown is an obvious concern and Doctor Glenn wanted it taken care of quickly.  Looking back to the appointment on Wednesday, we can now see why the doctor did what she did and said what she said.  It now seems apparent that the doctor knew what this was, but needed confirmation, but didn't want to alarm us in the meantime.  So she went along with my quip of, 'It could be just a pinched nerve, right?'  Her response was only that it could be.  Likely her hope along with ours.

With that news on Thursday, they told us to stand by Friday morning as they wanted more tests and treatments, likely radiation, to come.

So Friday came.  And it was one of the craziest days up there that we have had (and we have had a few to compare to).  We received a call at 8:20am asking us to be up there by 9:00.  The drive is about 45 minutes and promised we would be there as soon as we could.  We arrived closer to 9:30.  We went to the radiology department to check in for a CT scan and get the contrast drink to start getting that in her system.  With the emergence of a tumor, the fear is that there may be more and they wanted the CT scan to see if they could find any more.  Once she started drinking the contrast, we ran back down to the Multiple Myeloma clinic (where we normally go for our appointments) and they ran some blood tests and accessed her port.  Once she was accessed we ran back up to the radiology department and she got her CT scan.  Having that completed we went down to the radiation department and checked in to have a discussion with one Dr. Gaffney, the radiation specialist.  The consultation was to check her out and let us know the next steps with the tumor.  They showed us the MRI image which showed the tumor.  He then explained that Lymphoma was easily treatable with radiation treatment and gave us the run down of what to expect, side effects, and timing.  Basically, because of the fast growing nature this tumor has grown, they scheduled the first treatment of radiation later that day, but first they needed to map her, which included another CT scan along with an xray.  I am hoping I can have Tiffany write of her experience there - both with the mapping and the radiation.  They wouldn't let me in because it was radiation, but the process she described seemed like something out of the latest sci-fi novel.

After the consultation we went back up to the radiology department.  As the tumor was found along the spine of her back and there is concern that there could be more cancer in the spine.  The doctor ordered a spinal tap (known as a lumbar puncture - I'm not sure which one sounds better) to get some fluid to be tested to see if there were cancer cells floating around in it.  At the same time of the tap they had decided to also inject her with a chemo drug to start fighting any cancer that might be there, even before results came back.  In essence, there is no time to waste.  She initially was worried.  She has never been a big fan of epidurals, having had some 'fun' experiences with them during child birth.  But the doctors wheeled her off promising it not to be too bad.  And it ended up not being bad, partly due to the fact that these doctors do it all day long, but also due to the fact that it was assisted by a live xray that helped them guide the needle to the right place.  Again, she was on her own, they wouldn't let me go with her due to the radiation on the xray.  It is hard to see ones significant other leave to get a procedure done that you can't be there.  It seems so lonely, for both the patient and those that wait.  After she had left, her nurse, Jill, came running down from the clinic.  She had promised Tiffany some drugs to take the edge off, knowing that Tiffany was a little worried about the pain.  I think once you been put through the ringer like Tiffany has been on some of these painful tests, you look forward to anything the doctors and nurses can give you to take the edge off.

But Tiffany came back a half hour later with a smile on her face, being wheeled back in on a gurney, saying it went so much better than she expected.  Prayers had been answered as the worst part of the day was over, or so we thought.

After some quick lunch (the potato bar is one of our favorites at the cafeteria there), we were asked to come back to the clinic where Doctor Glenn wanted to talk to us.  We were asked to sit in a procedure room and the nurse said she would be right back 'with the team'.  Now, you see, we have seen a many doctors and nurses while attending that clinic.  We love them and are very grateful for them.  At a normal visit, we will end up seeing three or four individuals, nurses and doctors, at various stages in the visit, but seldom do they all come in at one time.

But came in they did and with solemn faces, though a few tried to push through some smiles.  Doctor Glenn came forward to tell us a little more detail about the tumor, most of which we had already heard about with the radiation doctors earlier in the day, though the one question we had wondered was answered.  If the chemo treatment was seamingly doing so well - with blood counts and liver tests normalizing, why was there now this tumor quickly growing?  The answer was that the cancer can change and mutate and these changed cancer cells may be resistant to the chemotherapy drugs Tiffany has been receiving.  Thus a new treatment has been called for, suggesting that they would try a more aggressive treatment, one that they hope will attack the cancer cells.  It would be a treatment that will require Tiffany to be admitted to the hospital for a time, about 5 days, depending on how quickly her body flushes out the chemo they give her.  This will likely start after they finish the radiation they were starting later that day.  So starting Wednesday, May 7th, we expect Tiffany to be admitted and starting the new treatment.

The meeting was quick, and as always, Doctor Glenn was to the point and allowed us to ask questions.  With typical fashion, we joked with them and tried to lighten the mood.  Because the news they were giving us, though indeed serious, was one that we have already faced and have come to terms with and know we simply must just move forward, using faith and hope, knowing that good things are yet to come. 

We finished that meeting and went down to the radiation department to start the first round of radiation treatment.  I have asked Tiffany to share her experience in there as I was not allowed in, again, due to the radiation.  She was in about a half hour and was out.  It seems so simple a procedure, and though they say she will have a sore throat in a couple weeks from this treatment, there shouldn't be too many side effects from it... which of course we will are glad for.

We hope and pray this does the trick.  Though one thing we have learned from the beginning is this...  BUT IF NOT....

In the book of Daniel, we learn of Shadrach, Meshach, and Abed-nego and their faith in their God.  They refused to worship a golden image set up by King Nebuchadnezzar who threatened to throw them into a fiery furnace if they did not.  Their response?
If it be so [cast us in the furnace], our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand.
A simple faith my kids (or really, any child) sometimes show - a simplicity that sometimes can seem almost naive.  But they then followed that up with the understanding that comes with mature faith...
 But if not, … we will not serve thy gods, nor worship the golden image which thou hast set up.
We are hopeful and pray that the Lord may protect and preserve our dearest Tiffany.  But if not, we understand that He is in charge, that He knows what is around the next corner, that He knows what is best for us... and that is our faith.  That we will trust forever in the Lord, our God, and even in these trials, though a true trial of faith it may be, will not shake our faith in Him.

We left Huntsman that evening with an uncanny feeling that things are going to be alright.  Leaving the facility, you get to drive out of what is one of the best views of the Salt Lake Valley.  It's stunning to say the least, but not as stunning as what we get to experience, in this our continued joyous journey of life.