Voila!

Thanks Aunt Sarah!  This will help.

I Guess I'm Not Wonderwoman

Maybe if I had the outfit and sparkles...

Last week was my first week on my own.  Cory had to go back to work.  It turns out, I did too much too soon.  I didn't think it would be hard to ask for help because I've depended on others so much this year..but, it's hard to ask for help.  Of course, Cory and my kids helped.  And my friends would've helped if I'd called them.  But, I still tried to jump into basically full mom mode right away and it didn't work so well.  Cory came to my rescue, and a good friend called to arrange some other help.  It's taken me through the weekend and yesterday to recover.  Slow and steady, slow and steady...

I'm experiencing slight symptoms of gvh (graft vs. host), like itchiness and dry mouth.  No big deal; just have to treat symptoms right now and keep an eye on it.

We have enjoyed two snow days.  And making Christmas sugar cookies.

Home

Thought it worth mentioning that McKay, Clara, and I made it home.  We are all together again!  We came home the weekend before Thanksgiving. Definitely something to be thankful for.

  Overall, things are going well.  I've been so grateful to do simple things like take my kids to the library, go to the grocery store (and I hate grocery shopping), fill up the car with gas...seemingly mundane things that I haven't done for almost a year.  I'm getting back into wife and mom mode.  Slowly but surely.  It's been a bit of an emotional roller coaster, but Cory is stabilizing me.  I need to find a transplant doctor to follow up with here.  The people and BMT program at Huntsman are amazing. I don't know that I'll find quite as good care here.  They got me through the hardest part; now I just need someone to keep following me.

Latest stats: 100% overall donor blood. 91% donor T-cells. 5% hair recovery.
Progress.

So, What Does Day 100 Mean?

Not  much, as I found out yesterday at my 100-day appointment with Dr. Hildebrandt (the actual Day 100 is November 24).  I asked, "So, what does Day 100 mean?  It's this big marker that we hear about from the first time we talk about transplant.  But...what does it mean?"

His answer was perfect, honest, and not much different from what I'd expected.  He said it doesn't mean much.  It's a "man-made" number.  Honestly, it comes from the early days of bone marrow transplant, where 20-30% (I think those were the stats he quoted) of patients would die within the first 100 days. So, to make it past those first 100 days was a big deal.  Now, although the mortality rate for BMT is not as low as those of us undergoing it would like to hear (and depends on many factors such as age, disease, donor, etc.), it is much improved.  For patients who receive and auto transplant (meaning their own cells are used), the 100 days means they get transferred back to their hematologist and are no longer followed by a transplant team.  For those of us with allo transplants (donor cells), it's more for insurance and administrative purposes.

What does it mean for me?  Basically, it ain't over yet.  And that's pretty much what I thought.  I will continue to follow up with a transplant doctor in Virginia, going to the doctor every week or two.  I'm still on an immunosuppressant and will have to eventually be tapered off of that.  While I'm still immune compromised, I still need to avoid crowds, certain foods, and be generally cautious about germs.  We still have to look for signs of infection.  We will continue to watch for graft vs host, etc., etc.  I still have to rest and allow my body to heal from this pretty major ordeal.

For now, things look really good.  My overall blood is now 98% donor, while my T-cells are 91% donor (my bone marrow DNA is now officially male, in case you wondered).  So, both improved after tapering the immunosuppressant.  Still need to get it to 100%, but not too quickly or we increase the risk of graft vs host.  I've only had one infection and it's been taken care of.  I feel stronger than I did 3 months ago.  My lung capacity decreased, which is to be expected after transplant. My lungs will continue to be monitored over several years.  My MRI was clear, although the ENT recommended anther one in 3 months as there was swelling present (no surprise; Dr. El-Shami had told me I'd have them every 3 months for the first year anyway).  I will have to start hormone replacement therapy in a few months, as I am now in early menopause (at 34? No thanks). But, things really are on track.  We feel so blessed.

On a side note, my hair is just starting to come back, including my eyebrows and eyelashes.  My 4-year old niece is fascinated by my baldness.  So, when she saw me the other day with fuzz on my  head, she happily said, "Tiny Hair!" Not a bad nickname.  So, this is Tiny Hair, signing off for now.  More updates later.

Day 76

Things look good.  I had a bone marrow biopsy a couple of weeks ago.  While 97% of my total blood production is donor blood, the cancer busting T-cells are only 80% donor.  They would like those to be closer to 100% by day 100.  To help that along, they tapered down the dose a little of the immunosuppressant I'm currently on.  The idea is, as the donor cells have a little more "freedom" without all the oppression (this sounds like a political post) from the anti-rejection drugs, they can do their job and totally take over my blood production.  That also means we have to look more closely for signs of graft vs host, but so far things look good.

I'm gaining my energy and strength back.  My appetite is still not awesome, but with time I'm sure it will get better.  I think it's a combination of meds and stress.  I'm trying to do more "normal" things while still being cautious about overexerting and germ exposure.  I've been told it takes about a year from transplant to feel 100% again.

Next week, I will start my 100-day work up. This includes an MRI, pulmonary function test, labs, eye exam, ENT visit, etc. I have my final appointment with the good doctors at Huntsman November 18.  They're going to transfer my care to a transplant team at George Washington, so I'll continue to follow-up in DC with them an my oncologist.  Cory's coming out to bring us home on November 22.

I've thought a lot lately about all the compensatory blessings we've seen this year.  I want it to be clear that we absolutely recognize how the Lord has blessed our family.  We have never felt abandoned.  At times, I have distanced myself.  But, when I bring myself back, always I see the Lord's hand in every detail of this year.

Sometimes, I Don't Feel so Heroic

It's been an interesting few weeks.  I wasn't feeling so positive and happy.  In fact, I was sending myself into a nice little depression.  My counts (platelets, hemoglobin, white blood cells) started dropping a few weeks ago.  Not completely unusual, as they can fluctuate as my bone marrow figures out whose blood it's making (mine? my brother's?). But I didn't feel well at all.  Besides being tired, I'd felt pretty good since coming home from the hospital. A few weeks ago, though, I crashed.  My hemoglobin got so low I needed a blood transfusion.  I hadn't needed that since a couple weeks before I was discharged.  My platelets were getting close to needing to be transfused.  And they had to figure out why.  I was at the clinic a lot.  And I was worried.  We changed some meds and got things rolling again.  Then I had some GI problems. Lovely.  Had to rule out graft  vs host, viruses, etc.  We got that figured out -- with some more meds -- and I was rolling again.  Physically, I was on a bit of a roller coaster.  Emotionally, I was pretty much on a continual downhill slope.  I knew it.  I knew I was feeling sorry for myself.  I knew I was depressed.  But I was sick of my family being split up, I was sick of feeling sick, I was sick of feeling fearful, I was sick of feeling guilty...I was done with this business.

So, where am I now?  Better.  Cory and my boys came to visit last week, which was wonderful.  And hard...because we had to say goodbye again. :) But, we're nearing the finish line.  We're more than halfway there (I think we're on Day 60 or so).  My counts took another small dip last week, but they changed some meds (again), and I'm confident they'll be fine.  They tested to see how much of my blood is still mine and how much is my brother's.  I'm 97% donor blood.  Good, but not quite good enough.  They don't want any of mine hanging out in there.  They're taking me off one of my immunosuppresants to see if that can help things along.  That will help out my immune system, but does mean we have to watch closely for signs of graft vs host.

I also had a visit with the cardiologist.  I'm still taking some meds for my racey heart.  He told me I have an electrical short in my heart; it's been there since I was born.  For some reason, it was triggered now.  So, I can take meds the rest of my life or have a procedure done in which they go through an artery in the leg to my heart and find the short.  Then, they fry it.  I actually know a couple people who have had it done.  For now, we'll wait.  I'm going to see how I do on meds and how it goes when life is a little more normal.

I did take a drive with my parents and babies to see the leaves in the mountains.  McKay was thrilled about the snow and had a snowball fight with Grandpa.

And, as I mentioned, everyone was reunited for a few days.  Since I am horrible at remembering to take pictures, this is about all I got of the week.

Clara being reintroduced to her brothers

Not even one picture of us all together!  Well, we know we were and that we were very happy to be so. :)

I talked with Cory, I talked with my parents, I talked with my Heavenly Father, and I pulled my head out and decided to get back in gear.  I had to make a choice.  I reminded myself of all the blessings we've seen and continue to see.  And we move forward.  My brother -- who knows a thing or two of adversity -- sent me a text:

"Stay loose and relaxed, everything is exactly right already."

Have I mentioned the amazing, supportive family I have?  And how they, along some dear friends, put together a 5k for us?  That's a post for another day.

Thank you always for the prayers and love.  We feel it.  Really.

“In my ninety-plus years, I have learned a secret. I have learned that when good men and good women face challenges with optimism, things will always work out! Truly, things always work out! Despite how difficult circumstances may look at the moment, those who have faith and move forward with a happy spirit will find that things always work out.” 

President Gordon B. Hinckley

No Clever Title

Here we are, hanging out at Grandma and Grandpa's! Love these kids; miss the other half!

I went to two appointments last week and some of my blood counts were dropping.  I also developed a small rash on my neck and race.  When I went in this past Monday for my appointment, they were happy to see that the rash was responding well to simple hydricortisone and that my counts had stabilized.  With that, they said I was good to just come back next week, rather than again this week as they'd thought.  We'll take it!

Home

After a month in this all-inclusive resort...

My room was well-decorated thanks to my  husband, kids, mom, and sisters...and many of you who folded cranes, sent cards, etc. These pictures don't include the two quilts made for me by members of my church congregation and my aunts, uncles, and cousins.  They took turns being on my bed; so much better than a hospital blanket.  The "Happy Birthday" sign was for transplant day.  I was well taken care of here.  The staff at the Huntsman Cancer Hospital BMT unit is amazing.  Really. 

I was so happy to come home to these two last Thursday (September 5):

I'm in full protective gear to hold Miss Clara.  She spits up a lot, and because the hand/foot/mouth virus can hang out a long time in bodily fluids, we're being extra careful.  

My parents are taking good care of us here, and Cory and good friends are taking care of the rest of my family in Virginia.  Now, we wait.  The first 100 days (starting with Day 0, the day of transplant) are the most critical.  I'm on immunosuppressants to avoid graft (Andy's stem cells) vs. host (me) disease (gvhd), in which the donor's immune system attacks the recipient's.  I still have to be very careful, then, of germs and sickness.  We also have to watch for signs of graft vs. host, which most often attacks the skin (rashes) and gut.  They also monitor my liver, because that is a target for GVHD.  

I had my first post-hospital visit this Monday.  Things look good.  Some of my counts had dropped -- platelets, white blood cells, neutrophils -- but they said they may fluctuate, so not to worry.  They'll watch it.  I go back in tomorrow.  My kidneys and liver look good.  I mentioned the concern for the liver, and the concern for the kidneys is from the meds I'm on.  Monday night I did not feel well at all and I hardly slept that night.  My central line (it's not a port and it's not a picc line...it's a tunnel catheter in my chest) was hurting quite a bit.  I went in again Tuesday morning to have it looked at, and that sucker was infected. They don't mess around with infection when you don't have much of an immune system.  I went up to radiology and got it pulled and they put me on an antibiotic.  Honestly, it's nice to not have to worry about it.  And, I shouldn't really need it anymore.  In the hospital, it was used to the max with meds, fluids, and blood transfusions. I shouldn't need anymore blood transfusions, I'm hydrating well, all my meds are oral...so, no need to have it around if it's going to cause problems.

McKay and I have been playing a lot of board games and taking walks at night.  I nap, too.  He started preschool, which is wonderful for him.  He enjoys it.  He also spends time with cousins when they're not in school or sick. :) Clara scoots herself backwards and is working on crawling; she rocks on her hands and knees.  She also has 2 little teeth on the bottom!  My boys in Virginia started 5th and 3rd grades, and Cory's coaching them both in flag football.  We all miss each other and are learning a lot about gratitude, humility, faith, prayers, and the Lord's hand always in our lives.  Always.

Thursday

Being discharged Thursday. Hoorah!

Engrafted!

After some time of looking like this:

Yes, all those cords and tubes were in one way or another attached to me. The colored cords are the leads for the telemetry I'm hooked up to to monitor my heart (still am connected to those), and the tubing was attached to my central line in my chest. 

My Tree of meds and fluids going into my central line.

I am happy to say that all that remains of all that is the heart monitor. I engrafted on  day 13, which is pretty much incredible. Engraftment typically happens between day 12 and 20, so Andy's cells (now mine) got to work right away. This is a huge blessing. As soon as my neutrophils started going up, my mouth and gut started healing. My platelets and hemoglobin continue to go up, as well. I haven't needed a transfusion since last week. I'm able to drink again, and am working on eating solid food. The doctors continue to be amazed that I was able to drink my calories and avoid needing IV nutrition. I tell them it was prayers and determination (which determination and strength came from all the prayers).  It makes recovery easier to not do IV nutrition, because it's better to keep your digestive tract engaged. We are absolutely recognizing the miracles for what they are.

We made it through phase 1 of the physical aspect. The hardest part of the past week was to say goodbye to Cory, Lucas, and Gabey as they headed back to Virginia. I would wake up from naps or the night feeling so sad and discouraged. I asked for a blessing from my dad because I can't let myself spiral down. I still remind myself of all the blessings we've seen and will continue to receive. I think it's Ok to say, though, that I still don't like this whole being split up bit.

Clara came down with hand/foot/mouth disease last week, and then Mckay got it (sounds really bad, but it's actually something we all get, usually when we're young).  The doctors won't allow me to go home until they are all ok, which will most likely be this Wednesday or Thursday.  I could go home today, but with sick kids at home, it's better for me to stay here.  But I'm leaving soon - very soon!  

Bald Again

I am quite the sight these days. Bald (again), my 12 year-old glasses (can't wear my contacts due to risk of infection and dry eyes), swollen cheeks like I have the mumps, tubes coming out of my central line in my chest, and leads hooked up to me to continuously monitor my heart rate. I have to wear a mask when I leave my room to walk around the unit. However, I do wear my own clothes. No need to complete the look with a hospital gown!
We had a bit of a scare the other morning. My heart was racing. Really racing. Lower 200's. Normals is 60's-70's. Granted, they do expect it to raise when your body is going through all the stress of this, but maybe in the 90's. So, I'm fairly nervous as the heart is, from what I hear, a pretty important organ. I may or may not have cried as the doctor was talking to me. Suddenly, a slew of people came into my room. One introduces herself as an ICU doctor. She told me they were going to inject a drug into my line that would slow my heart waaaaay down, and that I might even feel it stop for a quick second. The idea was to shock my heart into resetting itself. And, actually, she said if it didn't work, they'd take me to the ICU and shock it. You can imagine that I was feeling completely calm at this time. First you're killing off my bone marrow, now you're stopping my heart?! Cory wasn't here yet. There is a really nice couple a few rooms down from us, and she is also doing the transplant. I knew that they were also members of our church and I asked if they could get him to give me a priesthood blessing.  They wanted to stop my heart first, so I had to wait ( although it was for this very reason I wanted to have a blessing). In went the medicine. It felt weird. My whole body tingled...but it worked. No need to shock my little friend. I am, however, now hooked up to a telemetry unit that allows " them" to always see what my heart is doing. Cardiology came by, and they'll keep an eye on me. My heart is still fast, but hasn't gotten near 200 again. Cory got here just after our friendly hospital neighbor gave me the blessing. He missed all the fun. Totally freaked me out.
Besides that, I'm just experiencing the expected chemo/ radiation symptoms. I'm only able to drink my calories...there's too much going on in my mouth that makes eating, and even talking, painful. You know what simple thing I miss? Enjoying a drink of water. Anyone who knows me knows that I drink a lot of water. With nothing being pleasant these days with my mouth, taking a drink of water is an ordeal.
I know it's from all your prayers that I'm even able to drink my calories. I just really want to avoid receiving nutrition through my line. I've received a couple of platelet transfusions, but my hemoglobin has been fine, so no blood transfusions yet. My neutrophil count (the white blood cells that fight infection) is a nice, round 0. No immune system whatsoever.
I'm going to shuffle around the unit for a bit for some exercise. Thank you always for your prayers, love, support, generous donations, cards, thoughts, and other acts of service that are literally carrying our family through this! And thank you a million times to my parents, brothers and sisters and in- laws who are taking such good care of my family and me. Couldn't have asked for better. Family is IT, my friends. What it's all about.

Thank You

Janna kind of beat me to the punch, but I wanted to thank everyone for all of the support we've received over these past few months.  You've all been a wonderful help and blessing to our family - we definitely appreciate all the many thoughts and prayers on our behalf.  Please keep them coming!

Janna mentioned in her post last night that we knew things would get worse before they got better - although we didn't want to believe it, we know it's the truth now.  We know things will get better, but we also know we have to pass through the hard stuff before we get to the better times ahead.  This is a not-so-fun but necessary part of the healing process.  Every day of trial brings her closer to being whole again, and being able to go home, be with family, and continue the healing process.

Day 4

Things are definitely getting more difficult, as is expected from the bombardment of chemo and radiation. I'm pretty weak, and my mouth hurts like a combination of mumps and strep throat.  Eating is becoming increasingly difficult; even talking is painful. I spiked a fever today. I'll admit, I was a little cocky going into it thinking I wouldn't get a fever. I made through my other chemo rounds without one. But, well, so it goes. I'm on antibiotics and they're doing a full work up on my blood, lungs, etc. I consider the little victories today like the fact that I got a shower, took 2 short walks around the unit, and even got on my stationary bike for a bit. Hoorah! I'm so grateful for the cards that keep pouring in, the visits, and the countless prayers offered in our behalf.  Yesterday I let myself get discouraged, today I felt a little fear...gotta feel those feelings then LET THEM GO. A friend brought me a little gift today to help me keep my kiddos close to my heart.  I was going to post a pic, but am technologically impaired right now. It's a little necklace with a circle with each of my kid's first initial. I was so grateful for the sweet gesture and immediately put it on. Picture later. :) As always, we cannot express our gratitude enough for your love, support, and prayers.

DAY ZERO

She's been in the hospital a week - undergone 13.2 gray of radiation treatments and one chemo treatment of etoposide in order to effectively kill off her bone marrow (and leukemia) and make room for her new bone marrow, which she received today.  It was kind of anti-climactic - the staff hooked her up to a little bag of what looks like tomato soup and it took about 15 minutes to enter her bloodstream.  Now we just have to wait for it to engraft, which could take anywhere from two to four weeks.  We'll know that is has engrafted once her blood levels start to increase from zero.  She's not quite down to zero now, but she's getting close.  This is because her old marrow is now ineffective, so in order to keep her up and running for the next couple of weeks, she'll need to receive multiple transfusions of blood and platelets.  Unfortunately this means that she'll probably not be able to see the kids until she is released, but it also means we're getting closer to her being able to go home.  And we've been blessed that the kids have been able to visit with her every day since she's been in the hospital.

But for now, we're taking it one day at a time, and today is Day Zero!  It was another good day.  :)

Some Starters on Team Janna

Today is Day -1 and Andy Rasmussen, Janna's oldest brother, being the lucky match for Janna's transplant, is in the hospital today to start the marrow transplant process.  It started for Andy this Sunday with daily shots in the stomach, and he had endured quite a bit of pain throughout the week as the shot concoction forced his marrow to go into overdrive and produce stem cells.  Andy is now in the hospital hooked up to a fancy machine that will filter out the stem cells from his blood and put everything else back in to his bloodstream.

They say that at times, the recipient can take on traits of the donor (hair color, blood type, etc.).  It could very well be that in a few months, Janna becomes an avid BYU football fan and has multiple strong opinions on politics.  :)

Thanks Andy!

A Good Day

I want it on record that today was a good day. Cory spent the night with me last night, my sister brought my kids to see me, my appetite was good and I kept all my food down, my other sister came to visit, a dear, longtime friend I haven't seen since we moved to Virginia came to visit, my spirits are good today, no chemo or radiation...a good day, friends. In fact, I'm feeling overwhelmingly loved, supported, and blessed. The blessings of all this outweigh the trial. And I will look back on this post in the tough days ahead when I don't feel that way. :) But, for today, I feel very blessed and very grateful.

Last Radiation Treatment - EVER!

As of this afternoon around 5:10pm, Janna is forever finished with her radiation treatments!  All she has left is one chemo treatment tomorrow, then the transplant will take place this Friday.  Every day gets us a little closer to putting this all behind us.

The radiation treatments were pretty tough.  They have started to sap her energy and keeping food down isn't easy.  But, the docs chose this treatment because of her type of AML.  We noticed that everyone's treatment seems to be a little different and we asked why some AML patients get mainly chemo and others get radiation.  The doc explained that because of the tumor that Janna had, and because of where it was (outside of the bone and near her optical nerve), they chose to give her radiation since it can penetrate every bone in her body, including bones and areas in the central nervous system.  Apparently some chemo treatments can never enter the nervous system, and if the tumor was close to the nervous system, they don't want to take any chances.  They want to make sure they get all of it, and radiation is the only way to ensure that.  These doses of radiation would be fatal without a transplant, which is scary to think about, but it has to be done.

Stole this from Janna's sister Ali - Janna, Clara and Gabriel, at the hospital today visiting together in the lobby.

She is doing relatively well, all things considered.  She is tired, often nauseous, but is walking regularly and riding her stationary bike in her room.  She is also not yet hooked up to an IV, which is unusual, but welcome since she doesn't want to be tied down.  She can be off of the IV for now because she drinks a LOT of water every day, so staying hydrated has been easy for her to do so far.  When she receives her chemo treatment tomorrow (Tuesday), she'll have to be hooked up, since it does a number on the kidneys.  Speaking of her chemo treatment - tomorrow is the LAST day she'll ever have to receive chemo (at least that's the plan), so we're planning on celebrating somehow.

Thanks again for all the prayers and well wishes - they are much appreciated!

Day -7

Janna was admitted to the hospital today.  She started the day off with full body irradiation this morning around 8:30am and then got to decorate her room! 

Last April, a friend of Janna's organized a service project and sent Janna over 1000 paper cranes - we decided to bring some with us to help improve the room's ambiance.

Overall it's been a pretty good day.  Having to say goodbye to the kids this morning was tough, and we understand that there are many tough days ahead, but we'll get through it.  The boys (and Clara) can come and visit until her immune system disappears, which should happen in the next few days.  And skype/facetime seems to work OK, so she won't be completely separate from the world.  

Today is Day minus 7, next Friday will be Day 0, and hopefully she'll be released from the hospital somewhere around Day 19 or 20.

BMT 101

My survivor jewelry!  My nephew Alex (a cancer survivor himself) made me the braided bracelet, and my mom (with Lucas's input) ordered the "Team Janna" bracelets.  Makes a girl feel loved. 

 A lot of you have asked or may be wondering what this whole bone marrow transplant process entails.  This is how we understand it...

I will officially begin this process this Friday (August 9).  I arrive at the hospital at 8:00 for my first total body radiation treatment.  Friday is day -7.  I will have four days of total body radiation twice a day, a day of chemo, two days of rest, then the infusion of my brother's stem cells on Day 0 (August 16).  Andy will begin his shots on Day -5 (Sunday) to spur his bone marrow production.  They will start collection next Thursday, in which his blood will be drawn, the stem cells that were created in his bone marrow and spilled over into his blood will be filtered out, then the remaining blood will go back to him.  This may take 2 days to get all that they need.  Those stem cells are then given to me through my central line just like a blood transfusion.  

The amount of radiation and chemo I will be given are to (1) destroy any remaining leukemia cells, and (2) destroy my bone marrow to make room for Andy's.  Without a transplant, my bone marrow wouldn't recover and I wouldn't survive.  

After the stem cells are infused, we wait.  While I am treated for and recover from the side effects of chemo and radiation, I'll receive blood transfusions as we wait for Andy's cells to make their way into my marrow and start making new blood cells.  I'll be neutropenic at this point, as my white blood cells (and red blood cells and platelets) will be completely wiped out, leaving me without an immune system. They will know engraftment (Andy's cells have begun producing new blood cells in my marrow) has happened once my white blood cell count reaches a certain level, usually 2-4 weeks after infusion.  I'll be able to go home when my white blood cell count stays stable for 3 days, and I meet several other stipulations (no infections, eating 1/3 of my daily caloric needs, etc.).  I will continue to be closely monitored for the first 100 days, which are the most critical. During this period, I will be on immunosuppressive drugs to prevent GVHD (graft versus host disease).  Because we are replacing my immune system with my brother's, there is the possibility that Andy's cells (graft) could recognize my body as foreign (host) and attack.  It is necessary, then, to suppress my immune system to avoid this as much as possible.  There is always a risk of GVHD...but it is a  necessary risk, as the benefit of the GVL (graft versus leukemia) effect outweighs the risk.  So, while Andy's immune system may fight my body, it will also fight the leukemia.  Hopefully I can experience minimal GVHD symptoms.  

Even when I'm out of the hospital, then, I will still have to take many precautions to avoid getting an infection my body can't fight.  I also have to stay within 30 minutes of the transplant center for the first 100 days.  Cory and the older boys will return to Virginia for work and school at the end of this month, while me and the babies stay here at least through Day 100 (November 22).  At that point, I will continue to be monitored by my oncologist in DC, and will wean off the immunosuppressive drugs over 6 months.

Those are the basic facts.  As far as our feelings about all this?  That's for another post. :)

Thank you for your love, support, and prayers.  

Quick Update

Just a quick update to Janna's short post last Friday - we're still planning on her being admitted this Thursday and she will start a seven-day regiment of radiation and chemo treatments.  Full body radiation will be for four days, twice a day, then she'll have one day of chemo, then a day break, then the seventh day will be "Day Zero".  She will be in the hospital between 25 and 35 days (most likely), although what they consider to be Day Zero will be on the 7th day of her being in the hospital.  It's around Day 19-25 that she will be able to leave the hospital and begin the ~75 day waiting period.  Around Day 100, she will be able to return to VA (at least we assume this is the case right now).

I Guess We're Really Doing This

I started my final pre-transplant work-ups today, and will continue them into early next week.  I will most likely be admitted to the hospital next Thursday, August 8, to begin the process.  So, we're going to enjoy a really great weekend.

Still Waiting

Quick update...we're still waiting.  The surgery went great.  The doctor wasn't concerned about what he saw in that sphenoid sinus; he said it just looked like scar tissue.  The preliminary pathology results look good.  At my follow-up yesterday they said it's all healing nicely.  As of today, as far as I know, the ENT doc had been in touch with my transplant doc to tell him that, while I need some follow-up next week, he's comfortable clearing me to continue my pre-transplant work-ups.  So, we may be that much closer to finally getting this thing going.  No dates yet.

Blessings of Cancer

Sounds strange, I know.  I firmly believe we are given trials like this so we can learn from them, although I'll admit that just what we are supposed to learn from this trial has been up for debate - and serious doubt - many times throughout the past few months.  But, I'll submit for evidence one blessing that I can see that we can continue to cultivate and receive more of over the next few months and years -

This is a picture of Gabriel and Mckay at the Days of 47 parade in SLC.  Now, nothing spectacular is happening in this picture.  No one is parting the great Salt Lake nor is anyone walking on water (it's been a long day and I haven't had much to drink, hence the references to miracles that included water).  But, hearts are drawing closer together, and I'll argue that our family is learning how to love and care for each other a bit more these days.  Now, this is apparently what we needed, and not everyone needs this exact experience to learn what we have to learn from this - but, we do.  And I'm grateful for it.

Bone Marrow transplant

My mom is now at one of the final stages in this leukemia  cancer: the bone marrow transplant. For those of you who don't know what that is, it is a operation where someone else s bone marrow is taken and put into someone else s body. The person who it was taken from will still have some bone marrow left, and it will reproduce. But, if this persons bone marrow does not match the person with cancers bone marrow, that bone marrow will not reproduce to completely eliminate the cancer. The bone marrows have to match. In this case, my uncle Andy has a match with my mom and my other uncle Scott is a "runner up". The doctors will have to load my mom up with chemotherapy to kill of her bone marrow because it is sick. Then, they will have to take some of Andy's bone marrow and give it to my mom. The operation itself is fast, but the preparation takes a while. We know we can get through this and all of your prayers have helped us and will continue to help us.

A Small Delay

Andy passed his tests with flying colors; he's the healthiest donor I could ask for!
My bone marrow biopsy and spinal fluid were all clear, which is great.  No leukemia cells.  We hit a slight glitch, however, with the MRI and PET CT.  There is a slightly suspicious spot showing up on my right sphenoid sinus (the farthest back sinus cavity, near the brain).  My transplant doctor, Dr. Hildebrandt, referred me to an ENT at the Univeristy of Utah hospital to check it out.  It is very possible that what is showing up is a result of the chemotherapy and/or radiation (the radiation I've received was localized to that right side of my sinuses and orbit, where the tumor was).  It could also just be residual from sinus disease.  But, going into a bone marrow transplant where they wipe out my immune system, there cannot be anything that is questionable.

I met with the ENT doctor today.  I did a CT Scan as well as the nose camera (probably a more technical term for that, but that gets the point across) to see what's going on.  The CT scan did show a spotty area in that right sphenoid sinus.  The doctor said he's 90% sure it's not leukemic cells, but we have to be sure.  So, he's going to have to biopsy that area.  He also found infection and polyps on my left side which, under normal circumstances, would just be something to watch.  However, since my immune system is going to be shot, an untreated infection could turn into a major problem (especially considering how close it is to the brain).  For these reasons, I am going to require another sinus surgery. It will be an outpatient procedure done next week, July 25.  This does put a slight delay on starting the transplant process.  Rather than being admitted to the hospital at the end of this month, it may be more like the first week of August.  That is assuming, of course, that the biopsy results come back negative (of course they will).

In the meantime, Cory will be headed back to Virginia to carry-out a conference he's been planning for 6 months, I need to get  my dental clearance, and we have a BMT (bone marrow transplant) orientation.  I think we'll throw some fun in there, too.

"I Just Don't Want to Shrink"

After my bone marrow biopsy and spinal tap last week, I ended up with the dreaded spinal headache.  I didn't anticipate it, since I've had two other spinal taps in the past 6 months without any problem.  But, this one got me.  Anytime I was upright -- sitting or standing -- my head pounded and I felt completely sick to my stomach.  I could hardly eat anything, and couldn't keep down what I tried to eat.  I had to go back to the clinic twice for IV fluids.  I'm not going to pretend I was a hero; I was fairly ticked to be feeling so miserable.  I figure there's plenty of feeling miserable ahead so I didn't really want to do it now.  I was so frustrated that I couldn't take care of my kids...because, again, plenty of that ahead.  The last week has pretty much consisted of my parents or Cory taking me to doctor's appointments (because I felt too sick to drive myself), and staying horizontal as much as I could.  I've hated feeling like a burden already because there's long road ahead of having to completely depend on Cory and my parents and brothers and sisters to take care of my family and myself.  That is the hardest part of all this.  Friends, this is not something I want to do. Some days, I just have to let myself admit that.  I'm scared for what's ahead for me physically, and I don't want my family to have to do this. But, as my mom says my wise grandma said, "You don't gotta wanna, ya just gotta." So, we gotta do this.  And we won't do it alone.  Besides the blessing of help from my family and friends that are physically here with us, we know there is extraordinary help beyond what we can see.

We did have a brief moment where it looked like a transplant may not be necessary. Based on something Dr. Shami saw in my blood recently, he wanted to do some genetic testing to see if we might be able to find that I have a low-risk leukemia (meaning low risk of relapse). If this were the case, I would just need a couple more rounds of consolidation chemo and we'd be done.  And right now, a couple rounds of chemo sounds like a cakewalk compared to a transplant. Oh, how we prayed and hoped this would be the case.  We met with Dr. Shami yesterday.  The genetic tests came back negative, which means we move forward with the transplant as our ultimate hope for a cure.  I was disappointed.  Maybe disappointed is an understatement.  Cory reminded me that now is the real test of our faith.  Heavenly Father wants us to ask for things, for miracles even.  And miracles do happen; we've seen that already.  For now, though, that was not the particular miracle we were to see.  Now, Cory reminded me, the test of our faith comes as we respond to what we do have to do; not to what we wanted.  Apparently, the Lord has a greater purpose for us in what's ahead. And it is in our Father and Savior that we place ALL of our trust, confidence, hope, and faith. I keep thinking of a recent talk by Elder David A. Bednar, an apostle in our church.  He spoke about conversations with Elder Neal A. Maxwell, also an apostle in our church, who battled leukemia himself.  Elder Bednar told the following:

During the course of our conversations that day, I asked Elder Maxwell what lessons he had learned through his illness. I will remember always the precise and penetrating answer he gave. “Dave,” he said, “I have learned that not shrinking is more important than surviving.”

His response to my inquiry was a principle with which he had gained extensive personal experience during his chemotherapy. As Elder Maxwell and his wife were driving to the hospital in January of 1997, on the day he was scheduled to begin his first round of treatment, they pulled into the parking lot and paused for a private moment together. Elder Maxwell “breathed a deep sigh and looked at [his wife]. He reached for her hand and said … , ‘I just don’t want to shrink’” (Bruce C. Hafen, A Disciple’s Life: The Biography of Neal A. Maxwell [2002], 16).

In his October 1997 general conference message, entitled “Apply the Atoning Blood of Christ,” Elder Maxwell taught with great authenticity: “As we confront our own … trials and tribulations, we too can plead with the Father, just as Jesus did, that we ‘might not … shrink’—meaning to retreat or to recoil (D&C 19:18). Not shrinking is much more important than surviving! Moreover, partaking of a bitter cup without becoming bitter is likewise part of the emulation of Jesus” (Ensign, Nov. 1997, 22). (To read Elder Bednar's full talk, "That We Might Not Shrink" , click here).

Elder Maxwell was referring to a scripture found in the Doctrine and Covenants, a collection of modern-day revelation scriptures.  In Doctrine and Covenants 19:18, the Savior says this of His suffering in Gethsemane:

"Which suffering caused myself,even God, the greatest of all, to tremble because of pain, and to bleed at every pore, and to suffer both body and spirit -- and would not I might not drink the bitter cup, and shrink --"

I've thought of that phrase over and over the last several months: "I just don't want to shrink".  I've faltered and whined; I'm human.  I've said I don't want to do this.  Always, though, I have to pull myself back to that phrase.  There is a higher purpose in this, as there is for anything any of us have to face in this life.  We all have stuff.  All of you reading this have your own burdens you are bearing.  You keep going, and we'll keep going.  And we'll all help each other along the way as we become who the Lord knows we are.

We Have a Match

It's a strange feeling...feeling like my brothers and sisters were all contestants on a game show, and I wanted all of them to win.  In the end, I'm so grateful all of them were willing, and grateful that one of them is indeed my match: My oldest brother Andy (with my younger brother Scott being the runner-up :).  So, here we go to embark on this journey together.

We all made it to Utah, and Cory and I met with the transplant doctor (Dr. Hildebrandt) at the Huntsman Center.  Things are really rolling now.  Now that we have my match, there are several things that need to happen in the next couple of weeks. First, Andy has to be cleared (labs, physical, etc.), and I have to have several things done.  I get to do another PET CT and MRI, as well as a bone marrow biopsy (looking forward to that pleasant experience again) and a spinal tap (3rd time's a charm), all to make sure the cancer is still in complete remission.  I also need dental clearance and a few other doctors to clear me, all to make sure I'm as healthy as possible.  Assuming everything checks out (of course it will), we're looking at being admitted to the hospital in the next 2-3 weeks.

As far as we understand so far, here is what we're looking at for the next several months.  The first step of a bone marrow transplant is called the "conditioning regimen", which involves either chemo alone, or a combination of chemo and radiation (depending on what the doctor thinks is necessary).  Often this is looked at as killing off your bone marrow and immune system.  However, I truly believe there is a lot of power in positive energy, and it has worked for me this far.  I didn't look at chemo as poison; rather, it was the medicine I needed to get better.  When I first heard the term "conditioning" for loading me up with chemo and radiation (my treatment will most likely involve both), I thought that was the world's worst euphemism. But, as I've thought about it, that is exactly what it is: A conditioning.  When someone is conditioning for a major athletic event, they are preparing their body for the task ahead.  That is exactly what the week(ish) of chemo and radiation will do for me.  It prepares my bone marrow to receive the new.  That first week of conditioning will be done in the hospital.  The day they do the transplant will be Day 0.  It is not invasive.  It is given to me like a blood transfusion.

As for Andy's role as my donor, he will receive a course of shots (I think for 4 or 5 days) that spur his bone marrow production. As his marrow produces an excess of stem cells, they then spill over into his blood.  He will be hooked up for several hours while blood is drawn from one arm, the stem cells are filtered out, and the blood is returned to his other arm.  This is known as a Peripheral Blood Stem Cell Transplant.  While it is not invasive for him, either, he can experience bone aches as his bone marrow production kicks into high gear. Having experienced this on a small level in April, I've told him he really ought to take the pain meds they will offer from the beginning.

After all that, things really get exciting, but I'll save that for another day.  For now, I am looking forward to a night away with Cory tomorrow (a big thank you to my parents who offered it to us, and provided the hotel and babysitting) where we will enjoy being together in a setting other than a hospital or doctor's office.

Utah, Here We Come

By way of quick update, we're heading out to Utah next week.  I meet with the transplant team on the 3rd.  We're not sure yet when I will be hospitalized to start the process as there are a few preliminary things that need to happen (finding a match, insurance clearance, labs, etc.).  My awesome brothers and sisters all got their lab work done this week to see who might be the lucky winner: A bone marrow match.  I do not take for granted the fact that any one of them is willing to do this for me. If none of them are a match, we have to go to the national/international registry...but hopefully we don't have to go there (it would just prolong the process).  As always, we'll update again soon.

Oh, and if you're curious what this whole bone marrow transplant thing entails, here's a link to a summary from the Huntsman Cancer Institute in Salt Lake City, Utah, where I will be treated.

The Journey Begins -

Getting my hair cut before I lose it.

Day 1

Day 2

Day 3

Fundraiser

This is Janna and Cory's sister-in-law and I am asking for help from all of you out there in blogger land.  
With the impending bone marrow transplant Cory and Janna are looking at some major expenses.  Janna and Clara will be flying out to Utah while Cory brings the boys out in their car.  Also Cory will be flying back to DC for work during this time.  This will be a huge expense.
I am not sure of their insurance but I am sure there will be a lot of co-pays and other expenses that will be incurred during her stay in the hospital.  There will also be many trips to and from the hospital once she is out to check her blood levels and such.
As the Martins started on this journey I was wanting to help but wasn't sure how.  Cancer doesn't just hit your physical health, it impacts all facets of life.  After talking with my husband I set up a fundraiser to help the Martins with one area, one I knew would take a big hit, the pocket book.  We have set up a fundraiser to help Cory and  Janna and ease one burden they are dealing with.  Funds can be given anonymously and no amount is too small.  If everyone out there would give $5 that would make a big dent in the expenses that they are facing.
Cory and Janna have been blessed with a great support system that have helped them so much on the journey thus far.   Thank you to everyone who have helped ease their burden!!!

Fundraiser link.

Leap of Faith

After a lot of prayer (a lot), fasting, discussion, thought, and not feeling sure going either route (transplant or more chemo), Cory and I felt like we needed to make a decision and move forward with it.  We knew once we started moving the Lord could help us know if that was the right direction.  Either way was a gamble.  I kept thinking, "Is the cancer going to kill me, or the transplant?"  We've been told this kind of cancer with the  sarcoma tends to relapse easier.  There are also a lot of risks involved in a bone marrow transplant.  We also have faith that whatever happens whichever way, it would be OK.  Don't get me wrong...it doesn't mean we're not scared.  Sometimes downright terrified. And it doesn't mean that sometimes our faith hasn't faltered. But, we have to let faith override the fear.  Otherwise, what are we left with?   The Lord has been with us and will continue to be.  We have faith in His plan.

With all that said, we decided to move forward with a bone marrow transplant.  We are going to do it at the Huntsman Cancer Institute in Salt Lake City, Utah.  I have an appointment to meet with Dr. Paul Shami (at Huntsman) next Wednesday the 19th.  I'll fly out to meet with him then return home.  Assuming he's also in favor of a transplant being my best bet for a cure, we'll then work to get all of us out there ASAP.

This is a recent email response from Dr. El-Shami:

Hi Janna,

I support your decision to proceed with transplant. I have been on the fence simply because of lack of reliable data to recommend for or against transplant without hesitation. Let's see what the folks at Salt Lake will think. Dr. Kantarjian of MD Anderson also recommended transplant (though yet again a 'wet' recommendation). Let me know if you need any help getting all the records to Utah on time. But it should not be a problem.

Keep me posted. 

More as it  unfolds.

We Believe in Miracles: The Journey Part III

Before I left the ICU the next morning, we had what would be a final visit from the neurosurgeon.  Again, he told me he was still "waiting in the wings".  Nice guy, but he was becoming like the grim reaper.  Nothing personal, doc, but I'm glad we didn't have to see you again.  Fortunately, I cleared the spinal tap with no meningitis.
After I left the ICU, the  next couple of days until I was discharged on Friday were somewhat frustrating.  We just had to wait.  Infectious disease wanted to wait for some labs to see what kind of bacteria we were dealing with, the ENT team was waiting on infectious disease, and the Opthamologist was just thrilled when he came to see me the day after surgery and saw how much better my eye looked.

Cory affectionately tagged this, "Janna's kool-aid lip".  Not the most flattering picture, but also not too bad considering I'd had two surgeries on my face in 3 days...and hadn't showered for, uh, several days.  I missed my kids and worried about how they were holding up, although I'm grateful I didn't have to worry whether or not they were being taken care of.   Grandma was being mom while Cory spent long days with me and went home to sleep.  I worried I would wear out my mom. She had planned to come help for a week with a new baby -- not be completely in charge of my family.  Her week-long visit kept getting extended as the story continued to unfold.  I am incredibly grateful for her willingness and ability to be here to help us.  I horribly missed my newborn daughter and worried she wouldn't know who I was.  Cory brought in pictures and videos of her on his phone. I was grateful she'd switched from breast to formula with such ease -- truly a tender mercy -- but wanted to be able to hold and nurse her again.  I thought I could work on getting my supply back when I returned home.

Thursday the Infectious Disease doctor told me I'd be going home with a picc line and a 6-week course of IV antibiotics. Something in my orbit lit up on the MRI, and they were erring on the side of caution as they feared a bone infection (of course, we learned later that these things showing up on the MRI -- at the base of the skull and orbit --weren't bacterial but, rather, part of the cancer). The antibiotics were such that I wouldn't be able to nurse while on them.  This may not seem like a big deal, but it was to me.  I mourned the loss of my breastfeeding relationship with Clara for a long time.  For some reason I couldn't contact Cory, so I called my dad and cried as I told him what I'd just heard.  I felt scared; scared of what was ahead and whether or not I'd ever feel normal again.  My dad reminded me to look where I'd come, not how far there was to go.

Finally, on Friday, February 8 (a week after going to the hospital), I was ready to be discharged.  I had my new accessory in my arm (the picc line), my pirate patch on my eye, my own clothes, the "kook-aid catcher" gone from under my nose, and everything in place for a home nurse to come show us how to administer the antibiotics and care for the picc line. Unfortunately, I walked in the door at home with another pounding headache.  I held Clara, said hi to my kids, forced down a bite of two of dinner, and went to my bed. I was surprised by how weak my legs felt climbing the stairs to our bedroom.  These were the same legs that carried my pregnant self up and down those stairs several times a day with ease just weeks before.  I couldn't believe how weak I felt.  And, for whatever reason -- anxiety, physical exhaustion, who knows -- I felt miserable.  Cory called a friend to administer another priesthood blessing.  They blessed me to sleep that night, which I did.  The anxiety-ridden hospital nights carried over into nights at home that night and for a while, but I was still grateful to be in my home, in my bed, with my family.

A Notable Experience Today

I woke up last night with my eyes stuck shut.  Inconvenient, yes, but nothing major, nor surprising.  3 out of my 4 kids have had goopy eyes in the last 2 weeks, so I figured it was my turn. I washed them out and went back to bed.  I woke up at 3 with the same thing.  Again, I went to the bathroom to wash them out. I looked up into the mirror and saw  my right eyelid was starting to swell shut.  Fear welled up inside me.  This was the same eye that swelled shut 4 months ago.  And it started in a similar way.  It gradually swelled throughout the day until it was sealed shut the following  morning.  I started to cry and pulled myself together, debating whether or not I should wake up Cory.  I went back to bed and my emotions got the better of me.  Cory woke up and, as I told and showed him what happened, I sobbed as he held me.  I felt so scared.  Again, my husband worthily administered  a priesthood blessing in which, among other things, he blessed me to feel calm and at peace that I could sleep.  We both fell back asleep.

I went to the doctor this morning and got drops for pink eye.  The swelling in my eye has gone down.  Logically, I knew when it happened it wasn't the same thing starting over again.  But, sometimes emotion overtakes logic.

I went to my first radiation appointment tonight.  It was actually what they call a "dry run", setting me up as if I'm receiving the radiation to make sure everything is as it needs to be for when we begin the actual treatments next Monday.  I was in the bathroom washing my hands waiting to be called back and, I was looking at my reflection in the mirror, I thought how grateful I felt to my eye for being so resilient.  Earlier today, I was practically cursing my right eye.  But, as I looked at it tonight, not only did I feel grateful for a body that has gotten  me this far, I felt grateful to it.  I was reminded of what a gift my body is.  Lately, I haven't been so grateful for these mortal bodies.  Not only have I at times felt betrayed by and frustrated with  mine, I've been discouraged by McKay's eczema I can't get under control and Clara's congestion she's had since she was about a month old.  It really has been the cause of much anxiety.  But, tonight, the Lord sent another tender mercy when he reminded me of the gift our mortal bodies are.  I thanked my eye for hanging in there with me, for still being able to see and for healing.  I thank my body for being strong and withstanding all it's been through.  Of course, as I thank my body, I am thanking the Creator of our bodies.


All this from a swollen eye.

We Believe in Miracles...The Journey, Part II

I arrived at GWU Hospital about 10:30 pm.  I was hungry and, since over the last couple of days I had been "NPO" (non per os; nothing by mouth) several times, I figured I might be again for a possible surgery the next day. I asked for a snack...which turned out to be the last solid food I'd have for about 36 hours! I flipped on the TV to take my mind off of the fact that I had no idea what was in store and came across and old "The Office" episode.  Perfect!  It had me laughing out loud.

No time was wasted.  Someone from the ENT team came to see me.  Then the opthamologist paid me a visit.  He had to pry open my eye and examine it.  I hadn't looked out of that eye for almost a week, so I was glad to find that I could still see out of it when he held it open!  And another tender mercy...I wear contacts.  I put them in every morning and take them out every night.  For some reason, the Wednesday my eye started swelling, I didn't put my contacts in that day.  I know it was more than just for "some reason"...just another detail the Lord took care of. At about 1:30 am, I was taken for an MRI. I had been told before I was transferred that this would be necessary, and I was trying not to panic.  I am claustrophobic and couldn't imagine being shoved in a tiny tube for 45 minutes to an hour.  I laid down on the table and about lost it when the first thing the tech did was close a cage over my head before shoving me in the tube.  No one had warned me about that!  I found myself tapping into the same abdominal breathing and relaxation techniques I've used through 4 labors.  There were some moments of panic as I lay there, closing my eyes, focusing on breathing, and saying constant prayers in my head.  Here I was having been through one surgery, probably facing another, and I was worked up about this ridiculous MRI.  Once again, the Lord helped me get through that experience.  When the tech came in over the speaker and said, "We're all done", I was so relieved!  In fact, those have been my favorite words over the last few months as various procedures come to an end! I went back to my room to try to sleep before the unknown of the later morning arrived.  "Try" to sleep being the operative word.  Let's be honest; no one can sleep well in the hospital. Nighttime was always anxiety-inducing.  Once I got home, I still found myself having residual anxiety every night.

I woke up around 6:30 am and called Cory in somewhat of a panic.  He was planning on helping my mom get the kids off to school and getting to me around 10 or so, but I asked him to please come as soon as he could. Add that to the tender mercy list...Cory got there a little before 9, just as the nurse came in to tell me I was headed to surgery.  Cory administered a priesthood blessing, and we found ourselves headed to pre-op for the second time in 3 days.  As I waited in pre-op I met with the anesthesiologist, the ENT (Dr. Sadeghi), and the Ocuplastic Surgeon (Dr. Mansour).  They explained they'd be tag-teaming this surgery.  While the first sinus surgery had cleared out the polyps from my right sinuses, ears, and nose, he'd had to stop before he could do much on the left because of bleeding.  So, Dr. Sadeghi would get in there again to see what needed to be done, and Dr. Mansour would see if he could drain the orbital abscess through the nose.  If not, he explained he'd have to make an incision on my eyelid.  We also found ourselves meeting with a Neurosurgeon...what?!  He explained that, because the procedure with my eye was so close to my brain, they'd be there if needed.  I think it was at this point we started to realize how serious this was.  I was getting nervous about being put under again and just kept holding Cory's hand.

I woke up in the ICU with an oxygen mask on (I hate those things; they make me feel claustrophobic) and hooked up to all sorts of leads. They were calling my name to rouse me, and I was in and out for a bit.  I asked where my husband was.  They called Cory to come in and I took his hand. He had to leave again for some reason, but I was still in and out.  He came back, and they explained that they would have to do a lumbar puncture (spinal tap).  Due to the location of the abscess (so close to my brain) and something that "lit  up" on the MRI, they feared meningitis.  So, a few hours after coming out of surgery, I was being prepped for a spinal tap.  Cory had to leave for that.  I remember being curled up in the fetal position and several people coming in to help me with the procedure.  One man, whose face I never saw and whose name I don't remember, said he was there to help me and asked if I'd like to hold his hand.  I did.  Seriously, he was like an angel.  I squeezed his hand and he and the doctor talked me through everything as it was being done. Towards the end I started to feel more pain and began to panic, so my "angel" put a little something in my IV.  That made me really loopy and slowed  my heart down, so back on with the oxygen mask (still hate that thing).  My nurse Justin was incredible.  He was so compassionate and kind.  I spent that night in the ICU.

What We're Working With

So, here's the latest.  We met with Dr. Mark Levis at Johns Hopkins.  He mentored our doctor, Dr. El-Shami, during his oncology fellowship for 4 years.  He was the one who favored a transplant at this stage, while Dr. El-Shami is unsure.  Because Dr. El-Shami respects and trusts Dr. Levis's opinion (and he's been consulting with him throughout my treatments), he sent us to consult with him. We made the trek to Baltimore.  Dr. Levis spent about an hour with us, telling us a little bit more about my disease, what a transplant entails, answering our questions and concerns.  We appreciated the time he spent...and left with our heads spinning.  It was emotionally exhausting.  It reminded me of the first time we met Dr. El-Shami.  We were overwhelmed as reality set in -- we were meeting with an oncologist, a doctor no one wants to add to their repretoire --, we found out  my diagnosis was still somewhat unsure, and I left with a bone marrow biopsy (a very pleasant procedure).  At least this time I didn't have a biopsy; just lots of blood drawn.  The gist of our conversation with Dr. Levis is that he believes this cannot be cured with chemo alone and, because I am a good candidate for a bone marrow transplant (age, health, likelihood of a perfect match with 5 siblings), that is what gives me the best chance of cure.  I asked him why he thinks we should and Dr. El-Shami doesn't.  He said experience.  I emailed him last week with a question about some genetic testing I knew had been done on my tumor (myeloid sarcoma) sample.  This was his response:

We use those genetics tests to classify the risk for patients with "typical" AML (i.e., AML with leukemia cells circulating in the blood, and coming out of the bone marrow).  In the literature available to us, there are too few cases of myeloid sarcoma where the genetic information is known to be able to predict how those changes influence the prognosis, so honestly even if we had the information on your tumor, I don't think it would help much.  The simple truth is that you have a very rare cancer, and we are forced to rely on our direct experience with these tumors.  I presented your case to our weekly leukemia meeting, with 6 other leukemia faculty.  Of the 7 of us, 6 were firmly in favor of transplant, while 1 was unsure.  This is not to say that you don't have a chance at a cure with just 2 more cycles of HiDAc and no transplant- its just that from our experience, patients with myeloid sacrcoma tend to relapse more readily than other AML patients, so we prefer to transplant them to maximize their chances.

We made an appointment to meet with Dr. El-Shami for the next week and he talked to us for about 45 minutes.  He showed us some data that he had used in presenting my case.  It represented a small sampling of people with AML, all older than me (the average age for AML is 60).  Not all had the tumor like I had.  Basically, it reiterated what we've been told over and over; I'm an unusual case.  Not unheard of, just rare.  As such, there's not a lot of literature to go off of in my treatments.  Dr. El-Shami said how incredible it was that I came through both the induction and consolidation chemo rounds relatively unscathed.  He said he could have a patient my age with my same numbers (cbc counts), feeling horribly sick and in the hospital with IV fluids and antibiotics.  He said I proved to be "one tough cookie".  I absolutely know it is from the many, many prayers offered in our behalf that I was able to tolerate such intense chemo so well.  That being said, he says it seems that my body could withstand the intensity of a bone marrow transplant, but he is not convinced it is necessary at this stage.  We respect his opinion, and we respect the experience and opinion of Dr. Levis.  Dr. El-Shami said he would also consult with Dr. Kantarjian at MD Anderson in Texas, which (as I looked up later) is the #1 cancer hospital in the country.  He is going to get back to us early this week with his opinion.

We do know that, either way, I am not finished after radiation (which I will start this week).  If we decide not to do a bone marrow transplant, I will do 2 more rounds of consolidation chemo (5 days of outpatient infusions, followed by blood checks twice a week and transfusions as needed).  As we gather information from all our doctors, we've also been to the temple, fasted, and are praying earnestly to seek Heavenly Father's guidance in making this decision.