Transplant Week!

Hello!

Well, I'm back in the hospital, but I'm happy to say that I had a wonderful 10 days at home with my family and peanut before I came back. Originally I was supposed to come back this Tuesday, but things got changed and I was admitted on Friday. Being home was great. I was able to spend time with Emma, wake up with her at night, read her books, took her to the Cheesecake Factory about a million times (because I can't help myself), sit in the rocking chair, and just do mom stuff (whatever that may be!). I think my favorite part about being home was waking up at night with Emma. While its really hard to get up in the middle of the night sometimes, I couldn't help but think every night that my time was limited, and I didn't take any of those nights for granted. There's nothing like giving your child a bottle alone at night and staring into their precious eyes. I think she's a little confused with her days and nights though, she likes to be awake at night; but, it allowed me to share some nice moments alone with her. 

  

After being home, the next thing Ryan and I had to conquer was packing a suitcase for a two month old baby to stay at grandma and grandpa's for a month. This was beyond hard. I'd say the two hardest things  for me so far have probably been driving home from the hospital after giving birth without my baby (she was in the NICU), and dropping her off to go back to the hospital. I FaceTime her everyday and she knows my voice. I get to tell her how much I love her and let her know that I will see her soon. It makes me so happy to see her smile when I talk to her. 

 

I got admitted back into the hospital last Friday. Ryan and I got here for about 9am and I had to get my catheter put in. I'll explain how it happens, if you don't like gross things skip to the next paragraph!  Basically, I had to go to IR (Interventional Radiology) and they put big wires into my chest for the stem cells to fit. I was awake for the whole procedure and I of course always ask way too many questions. The way it was explained to me, or at least I understood it was that a big wire was fed through my jugular and wound up near my heart, and came out of my chest. Its strange. I guess its similar to the PICC line I've described in other posts, but its bigger allows for the stem cells to fit nicely through the line without getting clogged. I have to say, its very scary to get things shoved into your neck while you're awake though!

After I got the catheter put in, I was taken to my room and started chemotherapy that day. So far I've had three days of chemotherapy, much like I've had in the past and have had four days of radiation, twice a day. The radiation was a totally new experience for me. The radiation treatment I got is called Total Body Irradiation (TBI). Its not fun. I've signed papers saying that I will be infertile and never be able to have more kids, I will most likely wind up with cataracts within the next 5-10 years, and although unlikely, I could develop other cancers or organ damage. Its hard to deal with these things, but I have to keep thinking of the bigger picture. Anyway, I went for the first day of radiation on Monday morning at 7:30. For the first three treatments, I was asked to stand in this apparatus. The radiation only lasts for eight minutes, then you turn for the other side for eight minutes. It doesn't sound hard, but before each eight minute cycle, it takes close to a half hour of x-rays to find the correct position. There are specially cut out lung blocks to block the radiation from getting to the lungs, and about 4-5 x-rays need to be taken before each cycle to make sure they were in the correct place. When all was said and done, it took about an hour and a half of standing in the apparatus and not being able to move. If you move, the process is started all over. I've lost so much muscle in my legs and they would just shake like leaves. 

After the doctors saw that I was having a difficult time standing, they set up a laying down position. I laid on a bag that felt like styrofoam, and they sucked all the air out to mold to my body. I had to lay in the same position for all of the treatments and once again had to get lung blocks made and specially placed. It was more difficult to place the lung blocks in the correct place for this position, so the days I laid down took closer to three hours to complete. The white machine is where the radiation was emitted from. The lights stay on in the room and you're in there alone. The machine made a humming sound and the techs watched on cameras from outside the room. It was much easier to just lay there. 

Some of the immediate side effects of the radiation are being really tired and irritated skin. Everyday I had radiation this week, I came back to my room to sleep for a few hours before going back in the afternoon. My skin kind of looks like a sunburn, its all red and I'm cold.  There are special creams to put on to keep the skin hydrated and all that fun stuff.

So tomorrow afternoon I will be getting my stem cells. Like I've said all along, I'm scared. For the actual infusion, the stem cells will go into my body over about an hour. I may get reactions and need Benedryl or steriods throughout. The nurses have been great here and assure me that they are prepared for whatever may go wrong. For the first few days I will get really high fevers that can reach up to 104F, and they have ways to help treat that as well. I think what I'm most worried about is organ damage, because that can be tricky if the cells attack those. I have to keep reminding myself to think positive and trust that everything is going to be okay. After the first few days of the cells being in, I will be getting more chemo to suppress my immune system to keep the cells from attacking my body. This will help with the graft vs. host disease and hopefully put me in a better place. 

So, that's about it for now. I can't believe all of this is happening. Its been such a long road to get here both physically and mentally. I'd say its even harder mentally. Things have definitely been hard the last few weeks, trying to stay positive and keep a brave face. I write these blogs and try to keep on the bright side, but I also have to be honest with myself and those who read it. I look back at my first post and read about how I never thought about the why me's? I do now, and I hate it. Its more so, why my family? Why did my daughter have to be born two months early and go through the NICU? How am I going to explain to her why she doesn't have brothers and sisters when she asks? Why do I have to worry about not being around for her first birthday party? There are so many thoughts that go through my mind every second of the day, all I can really do is hope for the best and believe it will all work out, because one way or another, it has to and it will. If there's one thing I've learned from this situation, its not to take life, love or family for granted. Life is so unexpected, one day you can be celebrating the best thing in your life, the next you can be fighting like hell for it. 

As always thank you for all the love and support thorough this process, it means the world. 

<3 Kristin

Almost Doesn't Count

If there’s ever a time where I would use the phrase “almost doesn’t count”, now would be it. Over the last month I was readmitted to the hospital for two and a half weeks. I was able to enjoy a good three days at home with Emma, but unfortunately I had to go back in for some complications.

A few weeks ago, I was at home taking a shower and noticed I was starting to feel very weak. I thought nothing of it and went to my infusion center appointment to get labs drawn to see whether I would need a transfusion or not. That day, my levels had gone very low and I needed two bags of blood and a bag of platelets. Throughout the seven hour day of transfusions, I had noticed my temperature going up and down and was nervous it was going to reach 100.3, which are grounds to be readmitted. I wound up going home that night around 9pm and took my temperature before bed. Unfortunately, it read 100.5, then 100.8 and I had to go back in. I thought I would be back in the hospital for a few days of antibiotics, then back home, but that was not the case.

When I got admitted to the hospital another big problem was discovered. After having Emma, I had the normal side effects and felt pretty good by the time I was back in for chemo. Unfortunately, my body thought it was time to go back to normal after giving birth and I started bleeding again just when all of my blood counts were reaching their lowest. This happened to be a very bad situation. The chemo did not allow my body to replace the blood cells I needed, and I was loosing way too much blood. I was getting blood and platelet transfusions around the clock, but nothing was able to keep my levels up. By this point, we started trying various methods to stop the bleeding, starting from the least invasive to ultimately having a procedure done. In less than one week I had over 30 blood transfusions to try to replace the loss. At this point, the blood in my body wasn’t even mine anymore. Thank goodness for the generous people who donate blood for once again saving my life!

That hospital stay was so tough. I wasn’t able to see Emma for the first week I was there. I asked everyday to see her, but the answer was always no. I was having such a hard time understanding the reasoning, but it ultimately came down to my and Emma’s safety, to protect us from infection and the bleeding. This was so hard. After the NICU I had three days with Emma, then I was back in the hospital. I desperately wanted to be with her and was not taking no for an answer. I cried everyday, was moody and generally not the most pleasant to be around. Once again, Ryan, my family, the doctors and nurses were all understanding and never held it against me. It still doesn’t make me feel good to know that I was being a brat. After the first week and a few days when I started to become more stable, I was able to meet Emma downstairs in the lobby for about an hour each night. While its weird only seeing your child in a hospital lobby, I was very thankful for the time I got to spend with her.

After the dust settled with those complications, I was able to go back home- finally! Since having Emma in June, we have not been home for more than 24 hours. It was so nice to bring Emma home and show her where we live. Of course she doesn’t understand, but its nice to have all of her stuff nearby and not feel like we’re constantly living out of our suitcases. We have all the amenities we need and are enjoying spending time with her at home.

Last week, my brother flew in from Florida to come donate his stem cells. We’ve been talking about this for months, its crazy that he is finally here, and even leaving soon. It’s been great to spend time with him. For the past week, he has been getting special injections that help to bring the stem cells into the blood stream. He’s such a trooper- these shots are not the most fun. I had to get them while I was in the hospital and I know they cause a lot of bone pain- and he’s getting triple my dose. I feel bad that he has to go through this pain, but ultimately I know he wouldn’t have it any other way. He is so happy that he is able to help me out, and I am so grateful. He went today to get his stem cells collected. They put a port into his neck, drew the blood, filtered out the stem cells, then returned the remaining blood back into his body. The process sounds simple, but it took many hours and I’m sure it was not the most comfortable. I think its safe to say I owe him big time!

Since my brother is donating his cells, that means I am that much closer to transplant.  I have been talking with the transplant team and they have been amazing with getting everything organized, helping me make sense of everything, talking to me about the process, answering my 1000 silly questions and generally trying to put me at ease. I think I am mostly scared just because my body feels beat up. It feels like I have run three long sprints without any breaks, and am going straight into a marathon. I felt pretty good after the first round of chemo, but after the c-section, second round of chemo, and the complications after, I just feel drained.

I feel so bittersweet going into the transplant. I’m starting to see a light at the end of the tunnel, but at this point, I will be leaving my Leukemia team and be transferred to the transplant team. I walked into my first doctor’s appointment pregnant and scared, but I am leaving with having met some of the greatest doctors, PA’s and nurses who helped get me into remission and helped make my dream of having a family a reality. Through these past five months, they have helped me in so many more ways than just helping cure my cancer. They help me feel like a real person with hopes and dreams, rather than just a victim of cancer. They have helped me stay positive on my toughest days, lent an ear when I needed to talk, and listened to me complain when I just couldn’t take anymore; plus, they love the thousands of pictures of Emma I send! They welcomed the difficult task of caring for not only one patient through the first round of chemo, but two- and I am happy to say that I now have my own family because of them. The reality of it is, today was Emma’s due date, if I didn’t get treatment, there’s a good chance we both wouldn’t be here today. Crazy, huh. I say it all the time, cancer sucks- but the people I have met and the support I have received really shows how much good there is in this world.  I gush about the Leukemia team all the time, but I know transplant is going to be just as great!

As always thank you for the love and support, it means the world.

 Emma, 2 Months