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.