Almost Home!

Hello from the outside of the hospital! This has been an extremely exciting week- myself and Emma both got discharged from the hospital. With the help of some amazing people, we were able to work out some logistical obstacles and are staying close to the hospital as a family. Cancer sucks, but the people we have met through this process have been nothing short of amazing.

Life on the outside is great. For the last few days and nights, Ryan and I haven't been able to put Emma down. Its such a great feeling to be able to pick her up, give her kisses and see her at all hours of the day- something I will never take for granted! So far she's been a great sleeper, we have to wake her up for her bottles! She's also getting so big, she's outgrown of some of her preemie clothes already!  Emma had her first doctor's appointment today. Ryan had to take her without me, as my blood counts are too low to risk being in a doctor's office with sick children. After explaining the situation, the doctor called me later in the day to talk, which was super nice. She got a glowing report! Its great to hear that she is doing so well, she's one strong little girl!

On Friday, I had the chance to meet with my transplant doctors again. There are so many logistical things to work out that we haven't thought of, but I know they will be taken care of. I got some more details on what to expect when I go for the transplant and its pretty intense. There will be a strong round of chemo and radiation and I am going to lose my hair again, which has been growing back. Once all the cells are destroyed from chemo and radiation, I will get the stem cells transferred into my body. Since my brother is a half match, it was explained to me that I will need additional chemo after they're put in to help minimize the graft vs. host disease. This whole process will take about 30 days in the hospital. After the transplant we will need to live near the hospital for three months to attend appointments and in case I get an infection.

Overall, I am terrified of the transplant. I think even more so than the chemo. When I was first diagnosed with cancer, the treatment plan felt more predictable. The doctors explained the medicines that would be used, were able to tell me exactly how and when I would feel certain ways and were able to predict exactly when I would feel better. With the transplant, it can be different for every person. There are so many variables that go into each transplant that its difficult to say how and what will exactly happen. It is basically up to my body and the way it wants to react to the new cells, scary! The only thing I can do is stay positive and trust that if any issues arise, they will be taken care of.

This process has been so crazy and anything but normal. It is literally the happiest and hardest time in my life. I get to be a mom to a beautiful baby girl, but at the same time I have to try not to die. Its weird. Its hard to find the balance between wanting to do everything for Emma, but also trying to make sure I'm taking care of myself as well and avoiding an infection. Ryan has been amazing and picking up so much of my slack. I wish I could be up with her for every bottle, but I have to rest. I want to change diapers, but I have to be careful with that too. When I do change them, I wear gloves...its my own child, it's not normal. I had to go to a doctor's appointment yesterday- Ryan and Emma walked over with me, but I went in by myself. I was there for six hours away from my child, not normal. Mom not showing up to the first doctor's appointment? not normal. Mom doesn't have hair? not normal. Someone around me coughs and I freak out? not normal. I still have my PICC line in and have to walk around with a mask and wires hanging out of my arm, not normal. We moved back to NY in April and we've spent a total of less than 30 days in our apartment, not normal. I don't like to complain, but the situation is just frustrating. I try to stay positive, but sometimes I stop and think, 'what the hell is going on?' My life feels like a movie and at times it feels like the bump in the road is turning into mountains. I'm so glad I decided to write this blog, because I read them over frequently. I need to remember how hard things were from the beginning and be able to look back and say, 'I did it'.

Anyway, my blood counts are expected to return within the next week or two and then we will be able to go home. I'll have about two weeks with my peanut and then I'm going back to the hospital for the transplant. Until then, I can't wait to take her out and enjoy life in a 'normal' way. I can't wait for Emma to see our home, take her for walks, and give her a million kisses.

As always, thank you for all the love and support.

Kristin

Round 2.

Hi.

I've been delaying writing this blog for awhile now, half of the reason being I just don't know where to start. These past three weeks have been difficult and very busy.

Ryan and I spent the two weeks after discharge (from having Emma) bouncing back and forth between the Hope Lodge and the NICU.  The Hope Lodge is an amazing place for cancer patients to stay while receiving treatment and is located right by Penn Station. Its run entirely on donations through the American Cancer Society and was such a huge help while we were running back and forth. We're so grateful for the opportunity to stay there, it definitely made the commute to the hospital much easier and we got to spend more time with Emma :).

Last week we were able to go to the blood drive that my mom and aunt had set up in my honor. We were blown away by the amount of people that showed up to donate, over 80 people! They said that a good turnout is usually around 50, so we did really well! Of all the blood collected, it was enough to help over 300 hundred lives, awesome! Thank you to all who came, it was so nice to see everyone and to meet some new faces!

Emma is beautiful and has been doing so great throughout her time in the NICU. She has been moved to a step down floor last week which means she's doing well, and is basically just there to grow a little bit more. She's been moved to a crib from the incubator already and is in line to be discharged as early as next week. She's a little NICU rockstar!

As parents its really hard to not have her with us 24/7. I trust the nurses and doctors are taking caring of her well-being, but I'm always worried about her happiness and like to know that she's being constantly loved and supported. If it were possible, I would be there around the clock with her in my arms. The amount of love I have for that little peanut is indescribable.

As of now, I'm back in the hospital for round two of chemo. As hard as it was to come back here, its been going pretty well. I was greeted with warm welcomes from all of my nurses and doctors and that made things a lot easier. I've been saying it since day one, these are such special people. As hard as it is to organize logistical things such as travel in and out of here from home, I know this was the absolute best choice we could have made to be at this hospital.  They go above and beyond to make things happen and we couldn't be more grateful. Since being admitted I have been able to go and see Emma everyday!

Overall, this round of chemo is different from the first one. There are two bags of a higher dose that run for three hours at a time with 12 hours in between. They run every other day and go over 5 days. There are special eye drops that have to go into my eyes every few hours to help protect them from damage. I also have to sign my name on a piece of paper before every dose. The high dose chemo can mess with your brain and its a way to make sure things are functioning properly. Crazy! Once my blood counts drop, I will be neutropenic and have no ability to fight infection. It is still up in the air if I will be staying in the hospital this time. Right now we're in the process of looking for either an apartment or hotel close by for Ryan and Emma so they can either be close to me, or I can join them while my counts go back up. I of course want to go home with my family. It breaks my heart that I can't go home with her and I can't help but think about how much I'm going to miss in her life.

Things are still looking up for the stem cell transplant next month. I was able to see my brother last week and while its still a super serious procedure, we're able to shed some light and joke around a little bit. He's doing well and taking care of OUR immune system :) I still find it so crazy that I'm going to have his immune system. Once I actually get the stem cells, they say that I get a new birthday. My brother is giving me the best new birthday present ever- a second chance at life!

As of now, Ryan and I are just trying to navigate through this process the best way we can. While we really try our best to stay positive, we're slowly finding that its being chipped away. The situation is frustrating, and we're trying not to let the small things bother us, but sometimes they do. The last thing I want is to become bitter and angry at life, because that's not what its about. I just feel lucky that Ryan and I are working together as a team, and now he has another little woman wrapped around his finger :)

As always, thank you for all of the continued love and support.

Kristin