Signs and Symptoms

Hi!

I often get asked the question, “How did you know something was wrong?” The answer is, I didn’t. Since I was pregnant, I was getting a lot of routine blood work, which ultimately lead to my diagnosis of Acute Myleoid Leukemia. Looking back, there were definitely some red flags that things were going a little haywire in my body, but I always chalked it up to pregnancy. I guess what they say is true, hindsight is 20/20! Some of the common signs of Leukemia are fatigue, easily bruising or bleeding and infections that will not go away.

While I was pregnant things were great. I was really tired my first trimester, but that was about it. I never had morning sickness, I wasn’t very moody and once I got pregnant my lactose intolerance went away! The day I hit my second trimester I suddenly had amazing energy and felt like I could conquer the world. About half way through my second trimester is when I started to feel a little bit different.

I can’t really pinpoint a time, but probably around 3-4 weeks before I was diagnosed, I started to get extremely fatigued very easily. It started with the shower. I would take a shower and have to lie down afterwards for quite a while. I was so exhausted that I couldn’t even get ready. My heart would be racing and just the effort of showering was so draining. Again, I just thought it was because I was pregnant. I took this picture before I went to the sonogram to find out what we were having. I had to talk myself up the whole time and tell myself I was going to actually do my hair and makeup. It probably took me a good few hours to get ready that day just because I needed to take breaks to rest. 

We lived in an apartment complex at the time. I would normally take our dog for a walk every morning and walk twice around the complex. Every single day the walks would get shorter and shorter. I went from twice to once, to half and just outside the door. I didn’t really notice at the time, but it was just so hard to stay on my feet.

I am convinced that my dog knew I had cancer before I did. She was being extremely weird. Out of nowhere on our morning walks, she would turn around on her leash and bark at me. I couldn’t figure it out. It got to the point where I was too tired to go on the evening walks, so Ryan would take her. She never barked at him. As soon as she came in the apartment she was back to barking at me. It got so bad that I actually made the comment, “I hope she doesn’t know something I don’t know”. 

"Go to the doctor, mom!"

There were a few other times where I felt weird. I went for a prenatal massage and wound up super dizzy. I spent the entire night googling what it meant, I was convinced that it went to deep and the toxins were going to my brain haha…I probably had low blood counts or blood pressure. I was also in the mall once and thought I was going to pass out while I was paying for my things, I thought it was just because I was hungry. On some of the bad days I tried to convince myself that I needed iron and would eat a hamburger. It never worked.

Many of the things I experienced were not too crazy, I like to believe it was caught pretty early; but, with this type of Leukemia it progressed very quickly. After all, its not like I thought I would wind up with cancer or even be able to carry a baby while I had cancer.

It just so happened that Humans of New York, a popular Facebook group, was doing special postings on patients and doctors at Memorial Slone Kettering while I was in the hospital for my first round of treatment. I pulled a quote from Dr. O’Reilly, “Cancer engenders immediate fear. I think that deep in our soul, we don’t want to admit to the possibility that we might have it too. So when someone else gets cancer, we turn that person into an ‘other’. If that person is ‘other than us,’ maybe it wont happen to us.” I don’t think anyone really ever thinks that it’s going to happen to them, it’s just something that you hear about. A friend of a friend, someone we don’t know, someone other than us, that’s who gets cancer. The truth is, it could happen to anyone.

It’s the most surreal feeling in the world to be told you have cancer. It was life changing for me. There were so many thoughts, what-ifs and uncertainties. There’s the grueling treatments and the uncertainty of survival, but afterward there is this appreciation for life. Looking back, I had some signs, but was it really enough to think I was going to die? Probably not. I’ve definitely learned to listen to my body and be aware of what is going on, if there's something weird, I go to the doctor now. Before getting pregnant, I never went. I've also learned that its so important to be aware and involved in your treatment. I always apologize to my doctors because I'm probably the most annoying patient, as I ask a million questions. I like to know everything. Why I'm taking certain medications, what they do, their side effects and other possibilities. At the end of the day, we're just trying to make it to tomorrow!

As always, thank you for the love and support!

Kristin  

Thankful!

Hi! 

So much has happened since I last updated this blog! I have to admit, the last time I wrote, I was not in the best of places. I was really run down, feeling sad and just wanted everything to be over. Over the past 30 or so days things have really started changing for the better. 

I'm home- as in my home, the place where my stuff is, for the foreseeable future! I don't have to worry about going in for more chemo, leaving my daughter or have any more scheduled hospital stays! Of course if I got sick that all changes, but its nice to know I don't have any more scheduled treatments and its mostly just recovery from here on out. I still have to travel into the city for my doctor appointments once a week which can be a long commute, but its so worth it. 

At my doctor appointments, I get my blood taken every week where they check for various things such as hemoglobin, platelets, white blood cells, electrolytes, my medication levels, and so many other things. There's probably about 8 tubes each time! My doctor also checks for any signs of graft vs. host disease, which I have been mildly experiencing. Since I left the hospital, I had a pretty bad rash all over my face and neck. It is most likely graft vs. host disease, where the donor cells attack your own, but just a mild form. It's been going on for a little over two months now, but its getting better. I have to be very diligent about wearing sunblock as these graft vs. host rashes are light sensitive. 

Now that I am approaching 100 days, many of the restrictions I had are slowly starting to be lifted. The first place I went to was the mall to take Emma to see Santa. I had to wear a mask and gloves, which is weird but I didn’t care. I was just so excited to be out in the community again! This week my doctor said I don’t have to wear the mask and gloves anymore, but I cannot be in any large crowds or near sick people. I just try to time my shopping trips when I know the stores won’t be crowded. I am also allowed to go to restaurants now, but have to still be very careful with cleanliness and choose trusted places. I still have to avoid raw vegetables and salads unless I make them myself to ensure everything is washed properly. My next countdown is the next time I can have a drink! I have to wait until I’m off certain medications, probably about three more months.

I still have a PICC line in my arm and have to give myself IV magnesium, probably for a few more months. It’s getting easier, kind of just a way of life now. The last few days I’ve been getting it over with in the morning and it kind of frees up my whole day (it takes 4 hours). Its definitely a challenge because I have to take care of Emma and wheel around a pole that’s connected to my arm, but I’m getting the hang of it. 

Last week was Thanksgiving. We had a small but great Thanksgiving with my parents. Thanksgiving has always been my favorite holiday- its about family, being appreciative for what you have and food. I like that there’s no stress of gifts and people can just be happy together.  I’m always thankful, but in particular this year I am thankful to be alive. I would say there were probably three solid instances where I came pretty close to dying throughout this process so far; but instead, I’m here and got to celebrate with my wonderful family. I’m so thankful to have the best doctors taking care of me- who have showed such skill, but also compassion for treating our delicate situation. I am thankful for my husband who has never left my side, literally sleeping in a chair for months in the hospital. I am thankful for my daughter, who lights up my life and keeps me going. I am thankful for my brother for donating his stem cells, without them there’s a chance I wouldn’t be here. I am thankful for my mom for putting her life on hold to take care of Emma and I. I’m thankful for family that traveled thousands of miles to come see us. I am thankful for the continued love and support I receive daily from friends, family, and loved ones, it truly makes such a difference. There’s definitely more I’m thankful for, but I’d be here all day. 

On that note, I’m definitely looking forward to the holiday season and being together with my family. My life has changed and all for the better. Obviously I wish this never happened, but I have such a deeper appreciation for life and for the love that surrounds me.

As always, thank you for the continued love and support! Have a wonderful holiday season! 

Kristin

Reality

Hello!

Its been awhile since I've updated this blog. Honestly, this recovery process has been so hard and I haven't wanted to do anything or write about anything. Also, I like to keep these blogs positive, and when I don't feel that way, its hard to write.

For the first 100 days post-transplant I have to live close to the hospital in case anything went/goes wrong. I'm probably about 60+ days now and I can't wait to get home. Overall, I have been doing okay- my blood counts are steady and normal, so that's good. At 30 days I got a bone marrow biopsy and that revealed that I had 100% male stem cells, no Leukemia, and none of the chromosomal abnormalities were present in my bone marrow before, so that's good. I'll have another biopsy at 100 days, and hopefully it will read the same.

I've had a lot of time on my hands. I've been so lucky that my mom has come to live with us during the week while Ryan's at work to help out. She cooks all of the meals since I can't eat out, cleans everything, does the laundry and helps tremendously with Emma. I have a great mama! 

Overall I've kind of been down in the dumps throughout this whole recovery process. As part of the transplant process you are required to see a psychiatrist before and during treatment. I joked with her on the first meeting and said, "do we have to meet because this is going to mess me up?" she said no, but I think I was right. I came to the realization a few weeks after being home that I kind of needed someone to talk to who understands what I'm going through, so I continue to still see her once a week.

I think a lot of my unhappiness is stemming from being home all of the time and having too much time on my hands. For the past 7 months there was no time to sit and think about what was happening, I just had to do it. Now, there are so many things I can't do while in recovery that I just sit and think about how crazy this situation really was and some of the very difficult things we had to go through. I also get upset at the amount of limitations I have on my life at the moment and am just craving a tiny bit of normalcy.

For this recovery, I am on a LOT of medication. Many of them are prophylaxis' which are used to help prevent an infection, but one of the most important ones is used to suppress my immune system to keep the new cells from attacking my body. This particular medicine can lower the magnesium in the body, which helps muscles and a few other things, so I have to do an IV infusion at home everyday, which takes about 4 hours. I have a nurse that comes to the apartment every week to change the picc line bandage and I get all of the magnesium and supplies delivered weekly. I have to say its super weird to walk around your apartment with an IV pole.

Since I have a suppressed immune system, I have to be very careful about getting sick. My body does not yet have the immune system to fight any infections, plus if I got sick, the new cells can take advantage and attack organs. So I basically have to be very careful. The only times I can leave the house are to go on walks and to the doctor. Whenever I leave I have to wear a mask and gloves. I look so crazy, but if this is what I have to do, so be it. I'm not allowed to eat out or get take-out, everything has to be packaged or prepared at home to ensure cleanliness. For those who know me know this is the hardest! I am the Seamless Queen.

For the past week, I have been starting to feel a little bit better. I have been doing physical therapy and I think its helping to make me feel a little bit stronger, which is also helping my mood. I am starting to see a light at the end of the 100 days, which will hopefully lead to a continued few months of healing. At that 100 day mark, my medications will start being slowly tapered off and things will gradually start to feel a little more normal. I CAN'T WAIT!!

That's it for now. As always, thank you for the continued love and support through out this crazy journey.

Love,
Kristin

Transplant and More!

Last month, I shared a blog about how I was going in for a stem cell transplant. It can be read here. I shared the prep of chemo and radiation and a little bit about life in between chemo and transplant. After receiving the transplant, I can now say my life feels completely changed.

For one, the transplant was physically the most challenging thing I've been through. The cells went in on a Friday afternoon around 3pm, and took about three hours. It didn't feel like anything going in, but once it finished I went to use the bathroom and suddenly felt way different. I was given some medication that helped me calm down and feel a little more normal, and I slept through the night.

The next morning, I woke up to my first set of fevers which were severe, but expected. I had fevers that reached as high as 103.9 and included total body uncontrollable shaking, sweating and general discomfort. This lasted for three days and I was treated with Tylenol (which barely worked) and sometimes some Demerol to stop the shaking. I was miserable and just wanted it to stop.

After the three days, I was able to get more chemo to help relieve the fevers. The fevers happen because in the half match, the cells in my body try to fight the new cells. Once I got the chemo, the fevers slowed down, because it destroys the cells who are not cooperating. Once the fevers stopped I was a little more comfortable. The chemo I got made me lose my hair completely. The last few rounds of chemo I received left me with some stubble, but not I look like Mr. Clean (remember him?)

After the fevers, I started to get weird rashes on my feet that hurt pretty badly. I also started to get mouth sores that made it difficult to eat and even open my mouth. I was given a PCA which is a special box of pain medicine that goes on the IV pole. I had a little button that I could press when I felt pain and it would give me relief.

While all this was going on, we were very lucky to have family to help take care of Emma. Emma spent a two week vacation with my parents, then got to spend another two week vacation with her granny and grandad from Ireland. We're so lucky to have a close family who all comes together in times of need to help us out.

As of now I'm still in the hospital and am hoping to get out soon. I'm on crazy medications with side effects that make my whole body shake. Its quite annoying and I can expect to be on them for about 6 months. I really want to see Emma everyday, and am looking forward to that. Overall, it seems like things were successful and I'm glad of that.

Once again, thank you for all the love and support.

Kristin

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

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

Happy Birthday!

We have a beautiful baby! Well, part one of our journey is complete, Ryan and I have managed to safely bring another life into this crazy world and we couldn’t be happier.

As mentioned in my previous post, things strayed away from the plan. I went to my last few appointments on Thursday and got a bunch of news. I was scheduled first for a bone marrow transplant consultation, which went really well. Ryan and I spent two hours talking with the doctor and it looks like its full steam ahead with planning for a stem cell or bone marrow (same thing) transplant after my next round of chemo. It turned out that one of my brothers is a half match, and he has generously agreed to donate his stem cells. The doctor explained that since they were unable to find a perfect match in the bone marrow registry, the related half match might work just as well. This process should start in late August/early September and will come with a 6-12 month recovery. Essentially, they are wiping out all of my cells in my current immune system, and are going to replace them with my brother’s immune system, pretty cool. There are many risks associated with this procedure such as infection and graft vs. host disease, where your body rejects the cells. I’m incredibly nervous for this part- people die from this, but it’s the best option in my case to hopefully be cured. As for now, I’m scheduled to go back to the hospital for another month starting July 5^th for my second round of chemo.

After that appointment I was scheduled to go get the second steroid shot before delivery. My OB was waiting for me and starting taking vitals right away. It turned out that my blood pressure was on the higher side of normal and I had a headache for the entire morning. She was worried about preeclampsia and recommended that I go to triage for monitoring to see if it would go down. On the walk over to the hospital, my blood work was processed from the previous bone marrow appointment (blood is drawn and levels are checked at every appointment) and it turned out that my platelets had dropped significantly from the previous week. I just started crying. It was, and I guess still is a possibility that the leukemia could be back already, but it could also just be from the pregnancy. Anyway, my OB talked with my oncologist and they decided that delivering the next day was the best option.

I was admitted to the hospital that afternoon and enjoyed my last few hours of being pregnant. I was sad knowing that Emma wasn’t ready to come into the world yet- she was doing flips, had hiccups and was kicking me like crazy- I could tell she was happy. The next day I was put on magnesium through an IV at 9am. The magnesium is given to people who deliver early to help protect both the mother and baby from complications such as cerebral palsy and seizures. I was scheduled for a c-section at 12pm, but there happened to be several emergencies, so we waited until about 7pm. It was hard to wait, but I’m grateful that my situation wasn’t severe enough to be considered an emergency. I also got another blood transfusion while I waited.

Around 7pm, I was taken back to the operating room alone. I was scared and crying (seems to be a theme here!). I knew Emma was going to be okay, but I didn’t know about myself. I was given the epidural and prepped for the surgery, Ryan came back shortly after. They tested my belly to see if I could feel anything, but all I could feel was a lot of pushing. A few minutes later, Ryan and I heard crying. That was music to my ears and I immediately started crying (again!). Prior to delivery, I was told that if the baby was okay, we might get a peek, but we didn’t get a peek. I was very nervous that something was wrong, but it turned out that the room was very cold and they needed to get her to the NICU immediately to keep her warm. The anesthesiologist went to take a picture of her to reassure us. They stitched me up and I went to the recovery room. I waited for the epidural to wear off and Ryan went to see Emma. He came back with pictures, and I couldn’t wait to see her.

After a few hours, I was finally able to see her. They wheeled my bed into the tiny transitional NICU and let me hold her. The feeling was incredible. I just cried (!). It’s amazing to me how much we have been through together. She has already taught me so much- most importantly, love and how to be strong. We spent about 10 minutes together, then I went to my room and she went back to the NICU. Ryan was able to go see her a few times, which I thought was really important.

Since being born, Emma has been doing amazing. She was originally on a CPAP machine to push air into her lungs, but she has already graduated from it. She has a feeding tube directly to her stomach and has been tolerating her feedings for the last few days. She is up to 10ml each feeding. I have been cleared to pump milk for her, which has been going pretty well. She has a lot of wires and IVs, which help monitor her heart and breathing. She’s very active, she loves to kick and move all over her incubator. I think she also knows her mommy and daddy now. She opens her eyes when we’re there and is so content when we talk to her and hold her. We love talking to her and singing songs and just being there. It’s amazing how we can spend hours in the hospital with her and it feels like minutes. We have been able to get over to the hospital everyday since discharge. The nurses have been great about letting us hold her, I’m also able to call the NICU at any time and the nurse always gives me a full report.

Overall life is pretty good right now. I always kind of feel like I have this doom over my head, but I’m trying my best to focus on the things that are going right. I’m so lucky to have a beautiful baby girl to hold in my arms and I’m going to focus and enjoy this time while I have it.

**One last reminder! The community blood drive is on June 30, 2016 at the East Islip Fire Department. New York City is in a blood emergency, please consider donating! We will also be testing people who wish to be put on the bone marrow donor registry! You can help save someone’s life!  

Emma Grace, June 17th 2016 3lbs 11oz

My first time meeting Emma

Baby Shower!

Hi! I apologize for taking so long to write another post, things have been hectic (in a good way)! Since getting home, a little over two weeks ago, things have been gradually getting better. The first week home was difficult. I was feeling very weak and a bit down, but luckily it only lasted a few days. Coming home was much more difficult than I had imagined. I thought once I was home, I would somewhat jump back into my daily routine, but that wasn't the case. I needed to sleep a lot, needed help just walking around, and I had to stay home until I went to the doctor because I didn't know where my blood counts were. It was heartbreaking to feel so helpless in my own environment and at times it felt like it wasn't going to get better.

After going to the doctor, a few days after being discharged, I got good news! I had a bone marrow biopsy and it confirmed that I had reached remission! :) The whole point of the first round of treatment, Induction Chemotherapy, is to induce a remission. All of the treatments afterwards are meant to maintain the remission. It was so exciting to know that all of the time in the hospital paid off. This helped to perk my mood, and I started feeling better within the week.

After that appointment, I had another with my OB. We set up a date for delivery! As of now I am scheduled for a c-section, but if the baby turns I will be induced. The plan all along has been to deliver Emma at 32 weeks, which would be the week of June 20th.  I know this sounds crazy, but while I was in the hospital, I got really freaked out that the star signs for that week turned to Cancer! What are the chances of getting cancer while pregnant, having to deliver two months early, AND having the baby's star sign be a cancer?! It was too much for me! I told my doctor and she apparently didn't think I was too crazy because she went along with my idea of choosing a delivery date for a Gemini (they were close anyway). Ryan and I were able to choose between three days, one of them being a Sunday, which I thought would be a nice day. I had no idea until I put it on my calendar, but its Father's Day! I am so excited that Ryan gets to have his daughter on Father's Day, how special!

After my doctors appointments, it was time to get ready for something I had been looking forward to for awhile, my baby shower! After all of the craziness surrounding chemo, it was difficult to focus on the pregnancy. I was so excited to get back into baby mode and celebrate her soon arrival. My mom, with the help of my friend Dawn and family, set up a beautiful baby shower for little Emma. Everything was amazing from the food, decorations and company. It was so nice to see my friends and family who I haven't seen in so long. I'm so thankful for everyone taking the time out to come celebrate Emma and for giving us such generous gifts. She is certainly one spoiled baby already! We only had a week between the shower and Emma's arrival and while she won't be home for awhile, I wanted everything set up and ready to go for her. We only had a week between the shower and her arrival, so the wonderful daddy-to-be, Ryan, has been busy every night setting up all of her stuff.

This week is filled with a ton of doctor's appointments. Today and tomorrow I will be going into the city to get a steroid shot. Since Emma is coming early, a steroid shot can be given a few days before birth to help develop her lungs. I will be getting the first shot today, and need to go back for the second in 24 hours. I will meet with my OB tomorrow for a final check up, be admitted on Saturday night and have Emma on Sunday! Within these appointments I will also be getting my blood checked and meet with a Bone Marrow Transplant doctor to discuss the best options for continuing treatment. As of now, I have a two week recovery time after the c-section and will be back in the hospital for round two of chemo. This round will be another month in the hospital and will begin after the 4th of July.

The last exciting thing I'd like to address is the blood drive! While I was in the hospital, and for all of my future hospital stays, I relied on many blood and platelet transfusions. To help give back, my family has arranged a blood drive in my honor. It will be on June 30th at the East Islip Fire Department. I will attach the flier below.  If you are unavailable but still wish to donate, consider making an appointment at your nearest blood center! It is so important for people to have access to the blood they need!

As always, thank your for all of the love and support. The next time I update this blog, Ryan and I will be parents! :) :) :)

Kristin

Happy to be Home!

I'm home! I'm so excited that I finally got to go home! I turned to Ryan when I woke up this morning and just said, "What the hell happened last month?" It was such a crazy experience that it almost doesn't feel real. At times, it felt like I was never going to see the outside of the hospital! Last Saturday, the final part of the blood count the doctor's were looking for, neutrophils, started to come in. I don't really know much about the cells, other than they're a type of white blood cell and that they were really important for me to have before leaving. Everyday since Saturday, they started climbing higher and higher, with one being the magic number to go home. While I'm still not at normal, healthy blood levels, I was high enough on many things to be able to come home. I still have to be very careful when out and about, basically avoiding crowds, being super careful with food, and staying away from germs. Over the month I've become so afraid of germs. I want to give everyone I see a hug, but I still have to be careful and hold back.

Otherwise, being home is great so far. It hasn't even been 24 hours, but its nice. I missed my dog so much, so it was nice to see her. I have a doctor's appointment next week for another bone marrow biopsy and sonogram, and I have to lay low until then. I'm still pretty weak and I'm starting to get a pretty big belly, so its not hard to sit home and take naps! In the next few weeks I'm looking forward to a bit of normalcy-  not walking around with a pole, not getting blood taken all day, and being able to go outside! 
On the day I was discharged, Ryan and I got to take a tour of the Children's Hospital where I will be having baby Emma. We got to see the labor and delivery unit, as well as the NICU. Emma will be delivered around 32 weeks, so we are planning that she will have to stay in the hospital for a little while. If all works out, Emma and I will be in the hospital together but in separate units. She will stay until she is healthy to go home, most likely about 36 weeks, and I will be back after I deliver her for my second round of chemo, another month long stay. The labor and delivery section of the hospital was beautiful, everything is nicely renovated and overlooks Manhattan. Touring the NICU was a great experience. We sat down with one of the doctors and got many questions answered, as well as talked to a social worker to ask about some logistical questions. Afterwards, we got to see some of the babies. There were babies there as small as 1 lb, and they were thriving. Babies were either on a warming table, in an incubator or in a crib. We got to see some babies that were born around 32 weeks, much like what we will be experiencing. We were told to expect her to possibly be on a feeding tube and ventilator. Having Emma go to the NICU doesn't really scare me too much. Being born at 28 weeks myself, I've heard the stories from family of what to expect, and believe that she will be big and strong in no time!

Looking ahead, I'm just really going to try to enjoy the next few weeks. I'm so grateful for everything going smoothly and am happy to be one step closer to the end of this.

As always, thank you for the love and support!

Kristin

 On our way home from the hospital! By the way, the wig is super uncomfortable and I took it off soon after!

No Hair, Don't Care!

There's a motto around this floor of the hospital, "quiet and boring." This basically means that that you're doing pretty well if you're not having any major problems that require attention. I'm happy to say I've been pretty quiet and boring for the past week or so. Although, there was one little hiccup last weekend, but we got over it. I was receiving a platelet transfusion, which I've gotten many times. When the transfusion starts, the nurse always says to let them know if you have any itching, headaches or shortness of breath. When the transfusion started, I was fine. About 15 minutes into it, the bottom of my feet started itching, then my hands. The nurse checked me out, and then went to go get some IV Benedryl. It turned out I had an allergic reaction to the platelets. In the time it took to get the Benedryl, which was pretty quick, my entire body was itching really bad. I wound up getting the IV Benedryl, what a trip! Literally within seconds of it going through the PICC line I was loopy. It makes your brain feel weird and you can feel it moving through down your arms, to your hands and finally through to your feet. Its the same dose as the pill I usually get, but it goes straight through your veins so it works super quickly. I fell asleep within minutes. They're not really sure why I had a reaction to this bag of platelets, but each bag can be a little different. Sometimes the number of preservatives or additives can be different and just cause funny things to happen. Every time since I've gotten platelets they use the IV Benedryl, I've been getting some good night's sleep!

Last Friday night was eventful, I got a haircut and I have no hair! For a few days before I cut it, it was falling out on my pillow, all over my clothes and when I put my fingers in my hair clumps would come out. That was super hard to go through and see. The first time I saw the clump, I called my mom crying. She was so nice and went straight to the store to get me some scarves. I knew then that it was time to get it shaved. I have been told by many people that once you start seeing it falling out, especially in clumps, that its best to take care of it because then its your choice and on your terms. Turns out, they were right! At lease for me, anyway. I feel so much better now that it is gone, I don't have to see it everywhere and now I can get used to it. I do have my wig in the hospital and I tried it on one day, but I've mostly been just wearing scarves or hats. Its not really practical to wear a wig here, I lounge around in pajamas all day and nobody cares what my hair looks like. Quite frankly, I don't even really care that much anymore either, we'll see how that changes when I'm out of here :)

Something I've found interesting about the whole hair thing is seeing people on FaceTime for the first time. I like to give people a warning if I'm wearing a scarf- I don't want to startle people with such a drastic change. Like I've said in past posts, I personally think losing your hair kind of makes cancer look real on the outside. I live this everyday and am pretty used to it, but for people who I talk to who haven't seen me since cutting my hair might be a little taken back when they see me. It doesn't bother me, I just don't want to make people uncomfortable.

I haven't lost my eyebrows yet, and don't know if I will. I was talking about it with my social worker last week and she told me about a program called Look Good Feel Better. This is a program that provides women with cancer tips and tricks for dealing with issues regarding their changing looks. I have noticed that my eyes are looking different. They're darker and kind of pink near my eyelashes. I guess that's to be expected given the beating my body is taking. This organization gave me a new bag full of nice makeup, and they're coming here tomorrow to show me how to use it! I'm so excited, I actually have a plan tomorrow. I was really excited about the makeup because I was going to throw mine all away. Its best to start new just to make sure things don't have bacteria or germs floating around. It turns out that this program is usually for women who are completing chemo as an outpatient and meet as a group once a month. The social worker reached out and asked if they would come see me because I'm stuck here, I'm so appreciative! The nurses are so excited too and can't wait to see how it comes out.

As of now baby Emma is kicking up a storm! I haven't heard anything from the OBgyn's, so I guess no news is good news!

As always, thank you for the love and support!

Kristin

 Here's a picture of my dog and her cousin because I love and miss her, she's cute, and I don't want my face to be the thumbnail for the blog! (My aunt is taking excellent care of her!)

 New Hair!

Mother's Day

Last week was pretty good, well, as good as you can get for being in a hospital. I finished the last bag of chemo on Thursday in the middle of the night, and that was a reason to celebrate. Being attached to the chemo is annoying. Since each bag lasts 24 hours, they are strategically timed for you to be finished in 7 days. There were some times where I had to be unhooked for a shower (which they don't like to do) or when I had to go for testing on another floor. I started the chemo on a Thursday at 3pm and technically finished on a Friday at 3am. I must have taken too long in the shower!

My in-law's flew in from Ireland on Wednesday to see Ryan and I. While we were kind of stuck in my room, it was so nice to see them and to have their support. We were able to talk and have normal conversations, and that was nice. They brought many gifts from family, Ryan and I are so grateful for everyone's thoughtfulness. I'm excited for them to come back once the baby is born. 

On Thursday, which was my last day of chemo, I got a beautiful surprise from the nurses. They had arranged a surprise for me to get my nails done. I was so surprised and grateful. For a few hours, it actually made me feel a little normal again. A nail technician came in and did a special manicure and pedicure. Since my platelets and white blood cells are very low, I couldn't get my nails or cuticles cut, but she still managed to make them look and feel pretty. I walked around the floor afterwards and showed off my nails and everyone was so excited for me.

Sunday was Mother's Day, which was also really nice. My parents and in-laws were here and we were able to spend some time together. My mom brought cookies for the nurses and they were really appreciative as well as a card for me. Ryan also gave me a very sweet card. The PA's gave me a cute gift bag filled with nice beauty products like lip balms and face masks. One of my doctors set up that I would receive special meals from the restaurant upstairs, I had bacon and eggs and even steak for dinner! All these little things made me feel really good and normal, I'm so appreciative.

On Monday (26 weeks), I had a sonogram. On sonogram days I get a wheelchair over to the Maternal Fetal Medicine section and get checked out. The technician was doing her scan and Ryan and I were watching on the screen. The baby was moving around a lot, which I have been feeling very strongly for the last week or so. The kicks have been so strong that my stomach moves and they can be felt from the outside, so exciting! (and reassuring :) ) While I was getting the sonogram, the technician said it was early for a 3D image, but she tried anyway. On the first try, she got a picture of the baby's face and she was SMILING! I couldn't believe it. I'm going to take that as her way of telling mom and dad that she's okay. Always looking for that silver lining.

I try to keep these blogs positive, but also honest. For the last few days, its been getting harder and harder to even get out of bed. They said that the two weeks after the last day of chemo would be the worst, and I'm starting to see it. Today especially, my mood just isn't there. I have an itchy and ugly drug rash from one of the many antibiotics I'm on, my PICC line is bothering me, and I'm just so over everything. This is definitely the hardest thing I've ever done and in my life, and hopefully will ever have to do.

There has been some talk lately about doing a stem cell transplant after the second round of chemo, if we are able to find a perfect match. In my situation, this disease can be cured through chemotherapy alone, but I could have a better chance of a cure, or not relapsing and a shorter hospital stay if I were to try a stem cell transplant. There are some risks associated, like my body rejecting the stem cells, but the doctor assured me that they would only do it if they found a perfect match. Statistically, siblings have the best chance of matching. I'm appreciative that both of my brothers agreed to be tested to see if they are a match, the results will be back in about two weeks. If they do not match, we will go to the bank. In the bank, people volunteer to be tested to see their type of cells. If it shows that they are a match, they would be asked to donate their cells to help someone in need. If you're interested in joining a bank, you can visit https://bethematch.org/ to find out more information and  where and how you can donate.  Also, blood and platelet transfusions are huge, I get them everyday, sometimes twice. If you're interested in donating, visit http://nybloodcenter.org/

Looking ahead, this is going to be a very long road, about 8 months. I still have about two to three weeks left in this stay, then I'll go home for about a week or two, and come back to have the baby. The baby will be born around 30 weeks, so she will spend some time in the NICU. After I have the baby, I will have about a week to recover and go back in for the second round. There are 4 rounds total, each about month, and they will most likely all be done in the hospital. Since we live so far from the hospital, they need to be done as an inpatient. If I were to get an infection or fever, much like I described in the last post, I would need to be close to the hospital. Seeing how fast things can escalate, its probably the safest place to be. Unfortunately, the baby would not be able to be with me as there are many germs around and it would not be safe for her. I can't help but think about how difficult it will be, but we are also still throwing around other options of places to live to hopefully be able to do the treatment as an outpatient.

Overall, I'm trying my best to stay positive, even though its hard sometimes. As always I am so grateful for the love and support through this process.

Kristin

 Emma Grace McKinley :)

Manicure and Pedicure