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November
26
2019

A (pre) Turkey Day Chrismakkah Miracle 2019

Hello Family and Friends, 

Fall is my favorite season. The cooler temperatures, the changing leaves, my birthday, my re-birthday, all the delicious carb filled foods; there are are many reasons why I love it. Ear infections and sinus infections do not make the list and so far, Fall 2019 has been full of those two irritating things. Just when I shake one, another hits me. Due to the summer of pneumonia and gVHD (graft versus host disease) I was put back on immune suppression. Therefore, my immune system is now even more fragile. Yay.

When I get sick, it takes me months to get over it and has the potential for creating gVHD flares. It's devastating to me physically and emotionally. Getting sick sucks for everyone. With a compromised and suppressed immune system it's potentially deadly. Most everyone has been really understanding about this and yet it still makes me feel bad. Relationships require effort and require you to show up. Two things that I can't do consistently because on any given day it may take all my energy just to wake up see my kid off to school and shower. Then I might be done for the day. I might only be able to do one of those things. Guess what I pick? It's not shower. Sorrynotsorry. When I'm not sick, I have been experiencing a trend of more good days than bad, which is great. The fatigue is real and doesn't waver but I'm definitely better than I was a year ago. Progress is progress, right? 
I am finally getting to a place in my recovery where I can do more but setbacks are inevitable. They are part of this new life I've been given and will forever be a part of it. I will never have a typically functioning immune system. Things should get better for me over time but I will always have to be more vigilant regarding disease precautions than a person with a non-compromised immune system. It's important for me to tell you that so you can understand why I might not go to an event or have to cancel at the last minute or just tell you I've run out of energy and I can't go. Or why I ask you each time we get together, if you or anyone in your family are sick. I'm frustrated that I can't participate in my life the way I want to even though I am grateful to be participating at all. Part of recovery is acceptance. I'm working on accepting that this is they way things are right now. 

Now to the exciting news! My blood type finally changed to my sister's type! It took two years but it finally happened. I have been red cell transfusion free for almost 4 months. My hemoglobin has been holding its own even with stopping the Procrit shots.  That means my bone marrow is now working on all 3 blood lines making enough red cells, white cells and platelets. Now, if I could just get my ears to unplug and the infections to stop...I know, I'm asking a lot. When I received confirmation that my blood type had in fact changed, a very lovely SCCA nurse just sent me a casual email response, "You're blood type is A+, your sister's type." I had to ask for the test and the results. They were not as anticipatory or excited as I was apparently. It's funny what's routine to some and monumental to others. 

Please send eustachian tube equalizing thoughts my way. That is what I want for Thanksgiving. I want to say, "I am grateful my ears unplugged." But today, I am grateful for you and that I get to celebrate another holiday season. 

Much love, 
Leslie

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October
4
2019

Fall 2019

Hello Family and Friends, 

I am happy to report I survived the summer. It was rough. I contracted a respiratory infection in mid July and it stuck around the entire summer. The events unfolded as such: I sprained a rib from coughing so hard, it turned into bacterial pneumonia after about 6 weeks, then--the crown jewel in the experience--I ended up with a bad case of graft versus host disease (gVHD) on my skin, in my mouth and probably my in my liver. I am still dealing with the painful effects of this delight. Needless to say, this summer was a bust. It was nothing like I hoped it would be. If I've learned anything from this entire experience, the one thing that I can always count on is...surprises! We definitely had a few fun days sprinkled in but if you ask my child how his summer was he'd likely reply, "Boring." He's not wrong. Although, medically speaking, it was much too eventful for my liking. 

This little bout of illness pulled me down pretty far, mentally. I was teetering on hopelessness. With the recurrence of the gVHD, I had to resume taking prednisone and another immune suppression medication. I was terribly frustrated by this course of action. I finally weaned of both meds in May and June and started feeling so much better being off of them. My kidney function was getting better, my energy was increasing, I was finally losing some of the fluid my body had been holding onto from all the prednisone. I felt like things were moving along then the virus hit and it all went sideways. I was really struggling to stay positive. It feels whenever I get a win, I get a big loss too. One step forward, ten back. I just kept thinking, is this my life now? The answer is yes, it is. After sitting with that for a while, I realized, yes, this is my life and that is ok. There are so many more good things in my life than bad. I can do this. I've done the hardest part already so I can handle these setbacks. It just took me a minute (or 100) to be ok with that but I got there.  

The really, really, really exciting news is that I have a normal (!!) red blood cell count for the first time in nearly two years. I haven't had a blood transfusion in two months and one week! My Procrit shots (stimulate red blood cell production) have finally kicked in. This week I didn't even get one because my hematocrit (proportion, by volume, of red blood cells in blood) was 42. (42!?) I usually live in between the 23-30 range. I only get to 30 right after a blood transfusion and it lasts for about a week. I've been getting transfused every 3 to 4 weeks for about a year. I've had over 100 blood transfusions since this all started. This development is huge.

This is only the second week of having a normal blood count. It's not clear if I can hold my own yet or if I'll have to boost with the Procrit. Either way, I am happy. Elated even. When my nurse showed me my lab results I was so damn happy. I wanted to tell everyone I knew. I wanted to yell it at strangers. "Hey, I have a normal volume of red blood cells. Isn't that amazing?" Then I realized that would be super weird and probably confusing. (I did however, yell it out my car window on the way home.) Then, I started thinking. I started thinking maybe I shouldn't trust this feeling. I shouldn't lean into the joy too much. I am always waiting for the other shoe to drop. Which sucks. Why shouldn't I enjoy this moment? I've lived through a lot to get to it. I am working on letting myself feel the moments of joy as intensely as the feelings of sadness because both are fleeting and both are just as meaningful to experience completely. Let's just say this doesn't come naturally to me. 

On the eve of my 42nd birthday, I fully intend to celebrate all 42% of my red blood cell volume to the fullest. These last two years have been hell. I've gone from dying to just surviving to now  almost (almost) living again. I am still tired and struggling and limited but I can do so much more than I could this time last year. It's cliché but true: It's a marathon recovery not a sprint. Too bad I've never been a good runner. Ha. Perhaps I'll focus on speed walking my way to the finish line. Seems more realistic for my flat feet. I'll keep walking as long as it takes. 
 

With Love, 
Leslie

July
17
2019

Summer 2019

Hello Friends and Family,

It made me laugh a little when I read I haven't updated this since January. It also made me sad to read and realize that so much of what I wrote then remains true now. It's been one year and eight and half months since my bone marrow transplant. I'm still in place where I struggle to respond when people as how I am doing. "I'm still missing a third of my blood volume at any given time, so I guess I'd say I'm pretty ok?" Ya, that sounds about right. Pretty ok." On the upside, there are some things that have improved or are improving. On the downside, I'm still red blood cell transfusion dependent and need blood transfusions every 3 to 4 weeks and I'm still very tired the majority of the time.  Time feels stagnant to me. It is measured in doctors appointments and how long it's been since my last blood transfusion. It's a strange existence and it's hard to make sense of sometimes. 

The good news. There is good news! I was cleared to fly in May to limited destinations. Mike and I celebrated our 15 year anniversary in Santa Barbara. It was relaxing. Our room had a veranda facing the ocean and we rented a convertible. We ate, stared at the ocean and drove around with the top down. It's a beautiful place. I cherished the escape. Five days with no doctors. I told Mike in retirement, I'd live in a van with him and we could just travel the coast. We'll see how I feel in another 15 to 20 years. Ha. I also got my PICC line (peripherally inserted central catheter line) out about a month ago. I cried tears of joy when I got to take two-armed shower for the first time in over 1.5 years. Normally, I wear a glove up to my shoulder to keep the line dry in order to shower and feel like I'm ready to aid in the birth of a calf. It really is the little things. I also am finally off Prednisone (nasty steroid and immunosuppressant) and the stinky Cyclosporine (immunosuppressant). I just finished the Cyclosporine a few weeks ago. Taking this drug caused me stage III kidney disease. However, my latest labs show some improvement in my kidney function so, maybe they are bouncing back!?. Keeping fingers crossed while embracing real expectations. 

With good, there is not so good. My immune system is that of a toddler (minus that vaccinations) so I have to be careful in the germy world. I'm currently fighting an unpleasant viral infection. The result of being red blood cell transfusion dependent has left me with iron overload. This is a scary situation because your body doesn't like to get rid of iron so it deposits any extra in your internal organs! Like your liver, pancreas, and heart. Yay! I am working with an iron overload specialist--quite possibly the smartest human I've ever met--to assess where these deposits might be and how much we're talking about. I spent the first half of my life having too low of iron levels. Oh the irony. This super smart specialist believes my impaired kidney function is affecting my ability to make enough red blood cells. My team at the SCCA has started me on a drug that is a synthetic version of what my kidneys produce to signal my bone marrow to make more red blood cells. The hope is that my bone marrow will respond, make more red blood cells and then I'll no longer be transfusion dependent. It's hard for me to put a lot of faith in this because honestly, I'll be crushed if it doesn't work. Mike and a few other friends are steering the Good Ship Positivity for me. I stay grounded in the idea it could work but it might not. The SCCA docs keep telling me my blood type will change. It might take years, but it will change. I am digging deep to imagine managing transfusions for a few more years and not turning into a complete bitter, professional patient. 

The shitty thing about this experience is that I can't prevent it from affecting everyone in my life. I can't contain to just something I have to deal with. It comes out in every aspect: physical, emotional, metaphysical, transcendental; you get the idea. I can't just keep it to myself, meet my needs and move on with my day. I have to have help. I have to tap resources that are often tapped out. I can't sustain relationships the way I once could. I often feel like I'm watching my life go by instead of feeling like I'm living it. It's a real pain in the ass. I have too much time to think with little energy to act or do. Historically, I would try to make everyone else feel better about my situation or say things that wouldn't reveal how hard it really is. I no longer have no space or energy to make others feel better about something that is frustrating and currently all-consuming. It's like forced super self-care and compassion. I had 7(!) doctor appointments this week. While heavier than most weeks, it's not even that out of the ordinary. Most days it still takes all my energy just to wake up and get out of bed. It's difficult to accurately convey the toll this takes on me physically and mentally. Pretty much everything feels like work.   

I still have to talk myself out of "all better now" thinking; that one day this will just go away. It will not. It is a chronic condition. It is a life-long sentence. I will always have had a bone marrow transplant. I will always be more susceptible to certain cancers due to and be managing side effects of the chemotherapy I had. I will always be managing increased fatigue. I will never have a normal functioning immune system. I know not one of us is entitled to a pain-free go-round on the planet.  Perspective is important. Maintaining an overall positive attitude is important. Some days it's easier to do than others. I remind myself everyday what I am grateful for. I do have a hard time when people say to me, "Well, it could be worse." Yes, it certainly could. I could be dead. That would be worse. The worst, in fact. Living with chronic, invisible illness is not fun. It's terrible. There's no way to spin it as something desirable. This does not mean my life is terrible or undesirable. I'm simply, very, very tired. I would like to experience a day without thinking about this disease or my recovery. I am told, by long-term bone marrow transplant survivors, that days like this will come. Unfortunately, due to the nature of this long af recovery process, they might be a little further in the future for me.

Turns out it really is best to take it one day at a time. I suppose that's why that's the mantra for recovery programs. To project out much further than a day is to suggest I have some kind of crystal ball. I don't. That's ok though. Some days are great. Some are terrible. Some are meh. That's why when you ask me how I'm doing I"ll probably say, "Pretty ok." Because that is the truth. 


Love, 
Leslie

January
4
2019

A Year (plus) Post Transplant

Happy New Year! I've been wanting to update this site for months but every time I set out to, I stopped myself. These last few months have been an introspective time for me and I guess I just wasn't ready to share with the group. It's been 429 days since my bone marrow transplant took place. Many people might think, "Well that's great! You're all better now, right?" I wish the answer was yes. I wish when people asked me how I was doing I could respond with, "Great! All back to normal now!" Sadly, that is not how this disease or recovery works. This is a chronic condition. The aplastic anemia is in remission, which is great. It's all the other side effects of the transplant and the medicine--the kidney disease, the diabetes, the fatigue, being red blood cell transfusion dependent--that I am managing and will be managing for years to come. I've learned that the benchmarks I held onto so tightly at the beginning of this were merely suggestions. I've had to embrace that my situation is different than the "norm" for transplants. All I can say to that is, of course it is. I wouldn't be me if I fit into some kind of normal mold of time and space. That is just not how I roll. 

My brain and my body are experiencing a disconnect right now. My brain, the CEO, is like, "Hey, let's move it along here. What's the hold up. It's been long enough. I'm ready to get on with life." My body, the Production Manager, responds with, "Uh, we're doing the best we can here. All systems are not functioning at capacity and this is as good as it gets right now, so chill out." Before my transplant and for several months after, people used to ask me if I got antsy and bored sitting in the hospital or sitting inside. The answer was no. I didn't get antsy because I felt awful all the time. Sometimes, it was all I could do to get out of bed. I needed to lay down after taking a shower. The more time that passed post transplant, the better I began to feel yet I felt still felt exhausted the majority of the time. Now, I feel less awful. I am definitely moving in the right direction. Now, I'm antsy. My body is less antsy than my brain and therein lies my new frustration; my body cannot keep up with my brain.

My blood type has not changed. I'm still red blood cell transfusion dependent. Which means I'm still getting red blood cell transfusions every few weeks. The good news is the stretches in between transfusions are getting a little longer and my new bone marrow is making new blood which is awesome. Sadly, I have so many anti A titers that I keep killing the new stuff. No matter how many talks I have with my body, it keeps doing it. Not cool.  I am told time will take care of this little problem. The strangest part of all this to me is that currently, I am two blood types: O+ (old) and A+ (new). More of my cells are my sister's donor cells it's just taking a long time for me to get to 100%. I'm at about 70% and 70% is up from 67%. Slow and steady wins the race, right? My white counts and platelet counts are within normal range (yay!). Missing a third of your blood volume at any given time is frustrating and definitely is one of the larger contributors to my brain body disconnect. This above anything, I wish would resolve soon. 

This recovery process is confusing, and complicated and nowhere near done. Having a chronic condition requires a big mindset shift--for me and the people in my life. "Normal" is no longer something I'm aspiring to become because that's just not how this works. Each day brings what it brings. Sometimes it's pretty great, sometimes it's ok, and sometimes it just sucks. I'm doing the best with the health I have right now. I'm not able to do all the things I want to do but I can do some of them. I just try to focus on that. I am not positive all the time because I don't think it's helpful to pretend everything is peachy keen when in fact, it is not. It's hard. I've been fighting for my life for over a year. I have plenty of fight left in me but I'd be lying if I said I wasn't tired. Some days I feel sad and defeated. Other days that I feel happy and appreciative. In other words, this healing thing, is not just about being grateful for getting better, it's also about the grief surrounding being sick. It's happy, sad, hopeful, devastating, frustrating, funny, and everything in between. It's the whole spectrum of human emotion. I feel all the feelings. Not all of them are happy. If you catch me on a rough day, fear not, I will cheer up. But only when I'm done feeling whatever it is a I need to feel in that moment.

I sincerely appreciate anyone who takes the time to read this. I appreciate all the love and support that still gets sent my way. I am grateful for all the prayers, light, love, healing energy or whatever your medium of thinking of me and my family has been and continues to be. I'm in it to win it, baby. Thanks for sticking with me as I stumble through this madness. 

With love, 
Leslie

July
27
2018

Day 267 Post-Transplant

Hello,

I wrote this two days ago when I was having trouble sleeping. I forgot to publish it. Whoops! 

One of the many gifts of prednisone is insomnia. I'm hoping that a little writing will help me sleep. I can't believe I'm 98 days out from being one year post-transplant. That is almost more than I can comprehend considering how full of adventures these past months have been. A crazy whirlwind that moves more quickly than I can keep up and yet I feel suspended in a place I can't wait to get away from fast enough. Everything coexists in positives and negatives. I live in maybes and hopefulness, sadness and anger, disappointment and setbacks, and small strides forward that sometimes feel like tremendous wins in a journey that has very little predictability. 

The good news: the prednisone is working. My liver enzyme numbers are better, my kidney numbers are better and my skin has cleared up significantly; all the presentations of the Graft Versus Host Disease are better. Which is wonderful. The other side of all this good is that I definitely have Chronic Graft Versus Host Disease. I will be on prednisone for many more months (forever?) in order to keep it under control. This makes me want to scream lots of obscenities at full volume at anyone who is a medical professional. The swelling is epic and uncomfortable. The diabetes is unfortunate and a pain in the ass to manage. When I confronted my oncologist with my research (because I love torturing myself) regarding prednisone and it's side effects on the body his reply was, "Oh yes, it's horrible for you." So comforting. He also mentioned that if he could put me on something else, he would so, I'll not make him a villain in my narrative. I just like to blame someone sometimes. I can't help it. I'm human. 

More good news. I'm getting stronger. I've been doing some light physical therapy two times per week and I think it's making a difference! I feel like I can go for just a little bit longer somedays and Emerson has noted that I'm walking much faster than usual. However, it's becoming challenging to fit in all my weekly appointments. Life is pretty much all about doctor office visits right now. I see my local oncologist once per week, I get magnesium infusions twice per week and with physical therapy twice per week, I'm running out of days! All these visits are helpful. I just wish I had more time to hang out and enjoy summer with my tween. He's quite amazing and one of my most favorite people to spend time with. 

The last bit of good news is related to my chimerism test results. The easiest explanation of this test is that it reveals how much of my cells are donor versus my own. Right now, I show a mixed chimerism. I exhibit 67% my sister's phenotype in my cells. That's up from 63% a few months ago. It's slowly but surely going in the right direction. I'm still awaiting the day which they declare my blood type has changed. *Le sigh*. 

We are trying to make the most of summer and get out when we can. I hope you are too. Use up that vacation time. Your family wants to see your face and your brain and body want to rest and relax. 

With love, 
Leslie

July
9
2018

Day?...Lots of Time Post-transplant

Hello Family and Friends, 

I wish I more consistently updated this site but exhaustion and a questioning of whether anyone really wants to keep up reading it prevent me from doing so more regularly. But, writing happens to be therapeutic for me so here is another installment of the Bone Marrow Transplant Diaries. Haha. 

It's just over eight months post-transplant. I'm STILL waiting for my blood type to change over to my sister's type. (Im)patiently. Due to this little hiccup, I still need regular blood transfusions (about every 2 weeks) to address the persistent anemia. This process is exhausting. I think I've probably had close to 100 blood transfusions at this point (so give blood if you can!). I have also developed chronic Graft Versus Host Disease (GVHD). My old immune system is trying to take down my new immune system. This seems to have manifested in my skin and liver. The treatment for chronic GVHD is high-dose prednisone for the foreseeable future. Which brings back the steroid-induced, insulin-dependent diabetes and comically puffy face/body. C'est magnifique. 

I know what you're thinking; Debbie Downer post. However, I'm just getting the bad news out of the way. The annoying thing about this disease and it's recovery is that is it long and somewhat unpredictable. There's no, "Oh, I'm done now and back to normal." I don't even know what normal looks like yet. I'm just waiting to be done dealing with the immediate so I can begin entertaining the new normal. I'm longing for boring predictability. Instead, I deal with whatever the blood work reveals for the week. While somedays I definitely feel physically stronger, it's still very much a consistently inconsistent recovery. 

I had a visit from a wonderful friend and former colleague yesterday. She and I don't stay in regular contact so we had a lot of catching up to do. In giving her the somewhat succinct version of this journey, I saw the "holy shit, you've been through a lot" look cross her face more than a few times. Sometimes I forget just how long and arduous this journey has been. I just tell the story, chapter by chapter. In talking with her I was reminded, as cliche as it sounds, how damn resilient we humans are. She was surprised I wasn't more angry or bitter about my experience. It surprised me to hear that I'm not coming off that way because frankly, I am both.

This gifts in my life are not lost on me. My support system is incredible. I have a husband who seems to be able to find energy even when his reserves are gone, a son who is capable adapting to the situation the day demands of him, and a mom who still takes care of me when I just don't feel well enough to take care of myself. And that's that's just the people in my house. I have fabulous friends and family checking in on me and helping me in so many other ways too. I am also incredibly grateful that I have a sister who was a match and was willing and able to donate her stem cells. I am grateful to be alive. And I am grateful be able to reflect on this experience and allow it to change me. No shortage of gratitude here.

Once my blood type changes, the anemia should begin to go away. The way it's been explained to me sounds like magic. One day, I'll just wake up and my blood type will have changed. Of course, it's not magic, it's science--it's just more fun to think of it as something magical. What can I say, I need to be entertained sometimes. I'm hoping to have the results a of blood test this month or next that will reveal what percentage of my cells are sister's (new immune system) versus mine (old immune system). Cross your fingers and toes for good news. 

Whether in person, in thought, in prayer--I appreciate the kindness and support you all extend to me and to my family. As the daughter of someone with a long-term illness, staying the course with someone through the ups downs is challenging. My dad fought a lot more years than I've even begun to stare down but I recognize the strain it puts on relationships. For all my gripes, bitterness and irritation, I am also full of love, grace, and appreciation. 

I recently came across a saying the seemed to sum up my current state of being. It was something to the effect of, "When things seem to be falling apart, they might actually just be falling into place." Perhaps this is true. 

Thanks for reading my update. Wishing you all the best. 

Hugs and love, 
Leslie

May
22
2018

Day 211

Hi there, 

I know it's been a long time since I updated this site, my apologies. The transition home has been full of just about every emotion you can imagine. It has been so good to be in my house with my family. It's also been a lot to manage. In the little cocoon of my apartment in the city, things were a little simpler. Being home, life is much more real. Which makes it good. It also makes it hard. More roles and responsibilities. And stairs. Stairs make everyday hard. When I first got home, I wasn't able to do much. I still needed a lot of help. Each day I did get a little bit stronger and being surrounded by Mike, Emerson and my mom, there was plenty of laughter and help for me to get acclimated quickly. 

I am still waiting for my blood type to change over to my sister's type so I'm still anemic. All my other blood count numbers look pretty good which indicates that the graft was a success. It's just the those darn red blood cells that aren't cooperating. Due to the anemia, I still need a blood transfusion about every 10 days. I also have adrenal insufficiency due to the high dose of prednisone I was taking. All these fun extras mean I am tired all the damn time. Which gets old. There is a lot of napping that has to happen. My cat is loving it (she would lay on my all day if possible). 

At a little over six months post transplant, truthfully, I thought I'd be feeling better than I do. Some days that reality is harder to deal with than others. I'm grateful for each day--good and bad. I'd would like the good ones to start out numbering the bad ones. My doctor at the SCCA is running some tests to see if a particular treatment is appropriate to help my blood type change. Hopefully that will happen sooner than later! 

This weird journey has been an isolating process. The doctors do a great job of preparing you for the transplant and all the conditioning leading up to it, but the aftermath is a whole different thing. It unfolds differently for everyone. I'd say the post-transplant process is more difficult than the time proceeding. With all the immune suppressants I am on, the newness of my actual immune system, my extreme lack of energy, and the crazy amount of doctor appointments I still have, it's been difficult to connect with people in person. Please know I'm thinking of everyone and I appreciate all the positive thoughts you've been sending my way. This is one heck of a long journey. Hang in there with me. 


Love, 
Leslie

February
8
2018

Day 100!!!!!!!!!!!!

It's here! Day 100! I made it. My last clinic appointment with my Red Team is today. This part of the journey is ending and by the end of the day, I'll be a long-term follow-up patient. It's almost incomprehensible to me where I started and where I am now. At my last meeting with with my Attending doctor, she explained I'll most likely feel better at the 6 month mark, better still at the year mark and mostly normal at the two-year mark. So, I'm over a significant hump with a bit further to go. Good thing I like and challenge. This is a long post so don't feel obligated to read it all; it's just something I have to write to complete this journey. These life-changing 100 days would not have been possible to get through without the love and support of a lot of people. Without further ado, I give you the cast and crew that got me to this day. 
 

My sister, Kim. Without her, this 100 day transplant benchmark would not be possible. I was dying and now I'm not. Sounds intense but it's the truth of the situation. Had she not been a match I would have been doing 3 months of intensive chemo and immunosuppressive therapy that has a significantly lesser curative rate than a bone marrow transplant. There was only a 25% chance she'd be a match but I had a feeling we would be because we are unbeatable at Pictionary (we were banned from being partners due to our sisterly advantage). The process for her was not fun, required her to be absent from her family and job for a few weeks (which is never easy) and the healing process was painful and lasted longer than anticipated. For all this, lucky and forever grateful is what I am.

My parents. Losing my dad in the middle of this was not easy. I'm still processing it. He was fighting his own battle while I was fighting mine. But I know he is rooting for me still and looking out for all of us. My mom, well, she is the best mom. She made sure my boys were ok while I was away. Dealing with her own grief, she still manages to be there for her grandson and he loves her so much. She is my touchstone for so many things. She listens to me and just makes me feel better like only a mom can. I am grateful for her everyday. 

The SCCA. On the first day I met him, one of the doctors I had as inpatient UW said to me, "I love aplastic anemia patients." I wasn't sure how to respond. He continued, "I love them because bone marrow transplants were made for them. There is such a high curative rate. We're going to get you better." And so, far, so good on that promise! There have been times of frustration with certain aspects but overall, I have had incredible, thoughtful, thorough care. I am grateful to live where I do to have access this level of care and treatment. 

My caregivers. I don't even know where to begin. When I learned that I needed a caregiver for 3 months. I thought: 1) Who would want to do this for me? and, 2) Who could interrupt their life to do it for me even if they wanted to? I was overwhelmed by how many of my friends and family offered to help. Chrys, Heather and Jenny, I'll never be able to repay your kindness. You were there when I needed you, even on the fly, willing to rearrange your life to help me. Having someone take care of you leaves you feeling kind of weird and vulnerable. Each of offered such thoughtful care and made sure I had everything I needed, I never felt like a burden. I enjoyed spending the time with each of you and it's something I'll carry with me forever. You are amazing humans. 

I have to give a special shout out to my caregiver, Sally. She's cared for me for 5 weeks. 5 weeks of her life she's given to me! Sally, for those who don't know, is someone I've known almost my entire life--since Kindergarten. Her oldest daughter Kari and I were childhood BFF's and I barely have a childhood memory without Kari and her family in it! So when Kari told me her mom was willing and able to care for me I was relieved to have someone so special to me taking all this on. Sally has been a loving friend when I need it, a nurse when I need it, an advocate when I need it and has made sure that I get a little fun in between taking eleventy billion pills and 8 hour clinic days. Oh, and she cooks me amazing food. I'll never be able to repay Sally for what she has done for me. But I will be forever grateful. She has a generous heart and a nurturing spirit. This time with her has been so very special and I will cherish it. 

My wonderful friends who support me from afar. It would take pages to thank everyone (I could but I won't 😉) but I would like make special shoutouts to Jordan, Andi, Shannon, Traci, Susie, Esther and Kari.  You all sent me multiple messages of encouragement throughout and the care packages you sent provided comfort to me. I'm grateful for your friendship and your thoughtfulness.

My Emerson. It has broken my heart to be away from him for so long. Watching this little boy deal with his mom being gone for four months has taught me that he is one resilient, smart, intuitive and wise-beyond-his-years-kid.  He comes up here every weekend, never complaining, ready to help and is so incredibly gentle and caring toward me. I could not be more grateful or proud of the person he is becoming. 

And last, but never least, my husband. He is the anchor who keeps me from letting this all get too serious and keeps me laughing throughout this madness. I don't even have words for how much he has taken on and how well he has handled it all. He manages everything--including me. He works all week, then drives up to Seattle to bust his buns taking care of me every single weekend. This man needs a vacation, STAT. He is a true partner and I am grateful for his love. I cannot wait to get home and move forward with our life together. We're going to rock this recovery, because that's what we do. We survive the hard stuff to fight another day together. 

I could go on and on forever thanking all my friends and family. I have felt all your love and support that you've been sending. I know every little positive thought has helped me in my recovery. As I said before, I am looking forward to reconnecting with everyone. It's going to take me some time so be patient with me. Please know that I am grateful for all of you who have supported me and my family. 

I'll leave you with this little ditty (the tiny video link, above the Facebook and Twitter icons) because I can't get it out of my head. You're welcome. 

Love,

Leslie