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.