Believe in Tomorrow

In early May, we spent a week in the mountains of North Carolina courtesy of the Believe in Tomorrow Respite home in Pinnacle Falls. To say we had a fantastic time would be an understatement. What I thought would be a nice week exploring the mountains and having some much needed family time transformed us all and helped us to forget about the challenges of the past (almost) year. The kids played together in and around the beautiful house, we hiked some amazing trails, had nightly bonfires, played in mountain streams and waterfalls, enjoyed breathtaking views, met some of the kindest neighbors and simply enjoyed exploring a new place as a family without distractions or constant reminders of Nathan's limitations. There was a time when I didn't think about tomorrow, or even any time other than the very moment we were living, it was simply too overwhelming for me to try to think ahead. So the name "Believe in Tomorrow" is so fitting for us right now for this trip...  I feel like we can truly look ahead and plan for our future and believe that there is a brighter tomorrow for Nathan and for our family. And that is just a beautiful thing! Here are a few photos from our trip.

"Pretty Place" AKA Symmes Chapel in South Carolina. This truly was the most breathtaking view!

Hiking the trails near the house 

Dupont National Forest

Dupont National Forest

Neighborhood waterfalls

Neighborhood waterfall 

More neighborhood hiking

Roasting our giant marshmallows

Our family rock for the healing garden at the house

The kids also wanted to make their own rock for the healing garden

Clinical Update BMT +237, Boost +181

It has been almost eight months since Nathan had his bone marrow transplant, six months since his much needed boost of additional bone marrow and nearly 11 months since his whole journey began. Life is good and feeling a bit more normal every day. The kids are enjoying spending time riding their bikes and having un outside now that spring has arrived and we even took a vacation to North Carolina recently. All of a sudden Nathan has a little color and is looking more like the bright eyed and pink cheeked little boy he was before he became sick and he even has many bumps and bruises to prove that his platelets are doing just fine these days.

Back in March, our friend Dana made a video of the kids for Be The Match to encourage others to join the bone marrow registry. We had a ton of fun making this and, while the original intention was for this video to help encourage bone marrow registration, it has become a treasured keepsake and we will be so appreciative of all that Dana did to create this awesome video. For those of you who haven't seen it click here.

I know I haven't been keeping everyone quite so updated on Nathan's medical progress. And I guess that's a good thing because no news is good news. There haven't been any major setbacks. Things are mostly the same. Nathan is still on fluids every night and thus still has his picc line but we hope that within a month or two that will change so he can enjoy playing in the water this summer. They are tapering his anti-rejection immunosuppressant medication (tacrolimis) slowly and he may be off that within a few months if all goes well and the more they lower his dose the happier his kidneys are. He hasn't had a transfusion since December 5th, that 99th transfusion, and his counts are steady and mostly normal. In short, his bone marrow is working and it's healthy and doing everything it should be doing nearly eight months post transplant. They did a count of his CD4 t-cells a little over a month ago and he was at 155. Normal is above 400 and his doctor explained that, while Nathan is at a good level and showing appropriate progress post transplant, a count below 200 is considered a differential diagnosis to tell whether a person with HIV has progressed to AIDS. Obviously Nathan doesn't have HIV but it was a good reminder that he is still very fragile, very prone to infection and viruses and living with a very infant immune system. Evidence of this can be found in his near constant viruses. He has had minor colds and coughs on and off since even before transplant. The good news is that he has been able to fight them off, even when his immune system was non existent (don't ask me how), but still it is a reminder that I need to continue to protect him, be diligent about hand washing and limit his exposure to groups of children. His hemoglobin and red count are still slightly anemic but holding and almost normal. His doctors expect that those counts will rise as his kidneys improve because the kidneys release a hormone called erythropoietin which stimulate the formation of red blood cells within the marrow. But I want to stress that his kidneys are well controlled with copious water consumption and nightly fluids, and his creatinine and BUN (measures of kidney function) are only slightly above the normal range.

As far as his medications, he is officially off all steroids as his hydrocortisone was weaned completely last month. As long as he is on tacrolimus (immunosuppressant), he will continue to take acyclovir (anti-viral), amlodopine (blood pressure med), micafungin (anti-fungal) and a monthly pentamidine breathing treatment; the amlodopine and micafungin might be removed when his tacrolimus level is at a very low dose but the acyclovir and pentamidine are very important to continue until his t-cell count is normal.

Many people ask what I'm doing to help build him up and support his immune system and, in short, I cannot do much while he is on tacrolimus both because I need to be very careful and safe but also because we are purposely trying to keep his immune system suppressed to protect those precious transplanted stem cells. Until we know for certain that his system is stable and that his body and those foreign stem cells are cooperating well without the immunosuppressant, the goal is to just keep things as they are. My only safe and effective way that we can build him up right now is with food, lots of healthy nutrient dense foods, with an eye on specific foods and culinary herbs that may assist him in any particular challenge that he is facing. And lots of exercise too. He is eating and drinking very well, is as active as ever, and growing like a weed. He is in the 50th percentile for weight and above 70% for height; he is my tall skinny little beanpole. I'd love for him to put on a little fat but he has always been very thin, except when he was on high dose steroids of course, so I am just happy that he is eating a well balanced healthy diet and growing normally after all that he has been through.

In the fall, they will begin testing for iron overload. People who have blood transfusions are very prone to having excess iron in their systems which can cause serious long term problems. If that is the case, generally children are put on iron chelation medications or they will have regular phlebotomy, or both. I am preemptively attempting to get a handle on any and all safe food-based methods of helping his body release that excess iron now so that it is less of a problem later. There are several medical studies indicating that wheat grass juice is highly effective in helping people reduce their iron level so I found a great supplement that is simply 100% organic freeze dried wheat grass juice and nothing else. We obviously need to be very careful with giving him supplements right now but this one is more like encapsulated food since getting him to take a shot of wheat grass juice every day just wouldn't go over well (and this is doctor approved too, they're not sure if it'll make a difference but they agree that any food based support is safe).

So, that's really all we have going on right now. We are still being very careful about exposing Nathan to too many germs right now but mostly we are just living a nice quiet, laid back, fun life. And we are working on planning his sixth birthday party this coming July too. I can't believe that he is going to be six, and that he spent his fifth birthday and the following months, in the hospital. This is turning out to be one special year for this amazing little boy.

Eight Months

Another month has passed by and progress continues to be great. Another month of rising counts. Another month at home and without any major hurdles. Another month without any transfusions. Another month of increasing health and vitality and energy.

Here are his counts as of last Monday, which is BMT +147 and boost +91:
White Blood Count: 6.6
Absolute Neutrophil Count: 3.9
Red Blood Count: 3.19
Hemoglobin: 10.9
Platelets: 314

So all of his counts are at a healthy level except for his red count and hemoglobin, but it's slowly getting there. The past month has been pretty quiet. Both kids have been fighting a small string of colds and, thankfully, Nathan seems to be able to handle these minor illnesses remarkably well. He did receive an IVIG transfusion this week just to boost his system a little bit as hisown IGG level, while normal, was still on the low end of normal. Unfortunately, Nathan's kidneys continue to be stressed and, despite his high rate of 24 hour fluids and his abundant oral intake, his creatinine has been steadily increasing  and was 0.81 this past Monday. Dr. Margolis is not terribly concerned which is reassuring but I really do not like to see this number going up especially since his immunosuppressive medication (the one that is causing his kidneys so much stress) will not begin to be weaned for at least a month still, possibly several months. I have hope that this is much like his prior liver inflammation, stressed out organs that are otherwise strong and able to withstand the inflammation... I hope. Suffice it to say that he will continue to have his picc line (peripheral central line in his arm) and Jay and I will be playing nurse for a good long time still. I wish this were not the case but it is what it is and, just like I told myself many many moths ago, I need to continue to be patient and know that all will be well even if it's not on my plan or timeline. And again, if I just look at Nathan I can see that he is doing great. He has such energy and joy and is back to his old playful and silly ways. It's amazing to see Nathan truly being himself again... even if he has a line of fluids and a backpack on his back at all times.

On an emotional level, I am finding myself mourning our former lives much more deeply this past few weeks. The knowledge that, no matter how hard I try, life just isn't and won't be the same ever again. And while I intuitively know that is perfectly alright, it also is a sobering realization and some days this reality hits me to the core. I may have been there every moment but I am simply in awe of it all, it's incredible and amazing and inspiring and heartbreaking all at the same time. I think this mourning, this processing, it's all normal and we need to embrace it and allow it to happen even if it hurts. Somedays I am overwhelmed with joyful tears, and other days its sadness and stress, then there are the days when it's all mixed up in happy/sad ugly cry. But I have somehow never felt anger, I think I am too aware of our blessings and thankful to be where we are to dwell on those destructive thoughts, but still I even have moments when I wonder why I'm not at least a little angry as insane as that may sound. These emotions seem to come in waves and I need to essentially ride those waves as they come.  It's that proverbial peeling of an onion, layer by layer and exposing something different each time. I think it may take nearly a lifetime to truly process the totality of this experience and be able to revisit it without tears and overwhelm.

I have found this experience to be the most intense and constant form of meditation that I could ever imagine. Always keeping a clear head, managing my thought streams every moment of every day; reframing, refocusing, training my mind... It's exhausting but truly the most valuable discipline that I have learned. A friend of mine used to always say that "you can't ride the roller coaster" meaning if I revel too much in the ups then I will be equally saddened by the downs, and that insight has never been more true than over the past eight months. Keeping a level head among such extreme ups and down, among the chaos of a life turned completely upside down, has been an intense practice but such a worthwhile one at the same time. And with this newfound sense of clarity, I began to realize that there are many blessings even in our darkest moments and I would hold onto those blessings for dear life. In our most difficult moments, I would take a breath and look at Nathan, really look at him. Get out of my head, resist the urge to live in denial or escapism or even over dramatization, and live in that moment. To trust his innate strength and in the lessons that we are meant to learn on this path. I cannot predict the future, but I can always remind myself to open my eyes and ears and to really trust the journey. We can make up a whole life in our heads but nothing outside that particular moment is truly relevant. Inhale exhale and let it all go.

Then there is that strength that people often talk of. "You are so strong!" Is a phrase that I hear most every day from well meaning friends, family and even near strangers. It is a great compliment and sometimes this strength feels like a calling, but other times it feels like a burden. Knowing I can go through what every parent would list as one of their worst fears and do it gracefully, while keeping Nathan in great spirits, without breaking down completely... it's so damn empowering but also a monumental challenge. And I am quite certain that every single person who says those words would rise to the occasion in the same way. That's the strength of being a parent, of being a mother, you don't know you have it in you until you desperately need it. But I still brush it off because it just is what it is and I was literally surrounded by strength the whole time. Jay was there every step of the way doing what I thought was the harder job... taking care of Camryn, shuffling between home and the Ronald McDonald House, working full time, making sure we had food to eat and essentially keeping it all together. That man is a saint and I can never wrap my arms around what he was able to do which enabled me to focus so completely on Nathan. And of course we had help, amazing friends and family who filled in all the gaps and made sure we could last the grueling marathon that was our lives. Nurses and doctors who held us together and helped to bring our little boy back. But truly, my strength, Jay's strength, doesn't even come close to Camryn's strength in confronting her biggest fears for love of her brother and a strong desire to help him. And our strength pales in comparison to Nathan's strength in handling everything that he has been faced with and doing it with a smile. To put it simply, we had to be strong because we had these two examples of profound superhuman strength looking right at us and what can we do but empower, encourage and sustain them through it all. Their strength is what is amazing to me, we were just along for the ride. 

Hepatitis?

Sitting at clinic and I figured I'd answer a question that I have gotten quite a bit lately. "How did he get hepatitis?" It's a potentially taboo question so I imagine many people have wanted to ask but didn't. Most people think of hepatitis as a virus cased by drug use or sexual contact (hep b/c) or poor sanitation (hep a). However hepatitis is actually a condition of the liver literally translated from Greek to mean "liver inflammation". Hepatitis is most commonly caused by a virus (aka hepatitis a/b/c/d/e) but it can also be caused by exposure to certain toxins or an autoimmune reaction. In Nathan's case, his hepatitis was caused by an autoimmune attack on his liver, specifically CD-8 T cells (a type of lymphocyte which is a type of white blood cell) went out of control and infiltrated and damaged his liver then subsequently attacked his bone marrow causing his marrow to fail even after his immune system calmed down. This is why I've referred to his liver condition as "autoimmune hepatitis" although I'm sure not everyone truly knows what that means. So there's your fun fact for the day... Hepatitis is not a virus, it is simply inflammation of the liver which could have many potential causes. And I'm very thankful that his particular case of hepatitis was acute and has fully resolved. 

The other question I've been asked is whether this form of hepatitis is vaccine preventable and the answer is no. There are vaccines which cover certain types of viruses that can cause hepatitis (hep A/B) but no vaccine can protect your liver from becoming inflamed or irritated by any number of potential triggers... and I think that is why the word "hepatitis" causes such confusion. Vaccines are meant to protect against specific viruses and that's it. There is no vaccine that could possibly protect against an overgrowth of a specific type of lymphocytes which then decide to attack the liver and bone marrow. Just like there is no vaccine that can protect against environmental exposure to a toxin which also can attack the liver. That simply isn't the purpose of vaccines. 

Seven Months

I had an epiphany last night; it's the 19th! Seven months since the day that our lives were turned upside down. And for once on this monthly anniversary, I am so very happy with Nathan's progress. We are home and together and got through a wonderful holiday season without any issues or admissions to the hospital. He has blood and platelets and white cells, not a ton, but lots and the cells are growing. He's not fighting any active viruses or infections and, despite having been severely neutropenic (i.e. susceptible to infection) for four straight months, he made it through and is gaining strength and energy every single day. He's eating and drinking and keeping it all down and not having any major GI issues. He currently has "angry" kidneys but this problem is well controlled with 24 hour IV fluids. Most importantly, he is himself again; that playful, fun, chatty and silly little five year old boy that he was before this all began (ignore the fact that he was four at the time). In the grand scheme of things, he is doing very very well. I am amazed at his turnaround because this all started with him having a remarkably unusual presentation of a very rare form of a very rare disease. Approximately 900 people are diagnosed with Aplastic Anemia per year, about 45 of which have the form that Nathan had (hepatitis associated aplastic anemia) and he literally wrote his own book given the unprecedented way it all began. He was admitted to the hospital with a increasingly sick liver and a platelet count of ten, requiring near daily platelet transfusions, and bone marrow that could no longer produce enough of the blood that he needed to live... a problem that was only getting worse by the day before his marrow completely shut down. He made some brilliant doctors scratch their heads for two months before they could give us a concrete diagnosis and we truly still do not know what triggered this vicious auto immune attack on his body. But his liver is all better. He is making his own platelets, white cells and red cells and he is finally no longer dependent on blood transfusions to sustain him. I cannot say enough how much joy that brings to my heart... that we made it through some of the worst times and are coming out the other side stronger and profoundly thankful for this gift of life. Here are his counts 119 days post transplant and 63 days post that much needed "boost" of bone marrow from his very generous sister, as usual with the normal ranges in parenthesis:
White blood: 3.2 (4.0 - 12.0)
Absolute neutrophil count: 1,700 (1,400 - 6,600)
Red blood: 2.99 (4.0 -5.3)Hemoglobin: 10 (11.5 - 14.5)
Reticulocyte%: 2.7 (0.5 - 1.1 - high is good in this case, his body is cranking out red cells at a record pace and he was even higher a couple weeks ago)
Absolute retic ~80
Platelets: 297 (150 - 450)
^^^ did you see that? Holy platelets batman! 

Now that we are home after living at or near the hospital for so many months, I find myself more emotional and more anxious about everything. I think the fact that we were getting daily lab results for such a long time caused me to have an irrational attachment to that sort of constant feedback. But I think the bigger factor is the reality check that I had especially during our three months stay at the hospital. Being in the hospital for as long as we have, seeing all the other children fighting their battles, it caused me to really look at Nathan and focus on each day and each moment so intensely. To look at him and see that, no matter what he was fighting, he still had that sparkle in his eyes, that smile on his face, and there was never a moment when the situation became immediately critical... many many children could not say the same thing. And also, sadly, to learn of yet another child who lost his or her battle, it was truly heart breaking. I couldn't mope or focus on the bad stuff, I was far better off looking at the sweet boy in front of me and just being his mommy. Even now, my heart is broken to learn of a third teenaged boy in two months who lost his battle. Three boys who were in the hospital at some point with Nathan; their names are Jake, Nick and Tanner. Three families who I got to know even if just casually while getting coffee or preparing a third breakfast for our boys on steroids. One mother who cried tears of joy with me the morning when Nathan began to engraft and his counts began to come in, but now her boy is gone. Three times I was brought to "ugly" tears upon hearing this tragic news. Three families who are forever left to continue on with their lives with a piece of their hearts forever vacant. That's just a hole that cannot ever be filled. And, while these families touched my heart particularly deeply, unfortunately there are too many more just like them. Now I know many people reading this might feel overwhelmed or want to look away but this is happening, children are suffering, families are losing children to disease at an alarming rate, and many more new families hear the news of a critical and life threatening diagnosis every single day. It's heartbreaking but it IS. I was completely unaware of this stark reality before our family became one of "those families" and I sincerely hope that our story can at least spread a bit of awareness and maybe even inspire others to open their eyes and their hearts to the far too many children who are fighting these huge battles. So what can you do? Truly, every little bit helps tremendously. Give blood at a local blood bank  Join the bone marrow registry at Be The Match; trust me it's easy to join and, if you happen to get called to donate, remind yourself that a seven year old id it and so can you! Give to organizations who are specifically fighting to create new treatments for children because the funding is seriously lacking here. Give time and energy to organizations who support these families; amazing organizations like Make-A-Wish and The Ronald McDonald House Charities among many many others that I will be sure to point out as time goes on. But most of all, open your eyes and your hearts... don't look away. These children deserve your attention. 

So what are we up to now? Mostly we are laying low and enjoying some much needed family time together and attempting to live as normal a life as we can. We don't get out much for fear of the flu which seems rampant right now. We hope that Nathan's kidneys will calm down over time so he can get off fluids and have his picc line removed by summer. I am still not sure how realistic this is but it's a goal. No matter what, we want to make this year, and every year after, special and meaningful and magical and wonderful for my two amazing children. Life is truly a miracle!

Home for the Holidays and So Very Thankful

There was a time, the weekend before Thanksgiving, when I was starting to lose hope. When another fever sent us back to the hospital and his counts were still stagnant and extremely low even two months after his bone marrow transplant and a week after his boost of additional stem cells. That Sunday after our second weekend at home together when we lacked any real progress, he had a fever, the anti viral medication that was making him very sick and refusing food for nearly a month, oh and Jay's car also was hemorrhaging oil that same day (which by comparison was really inconsequential but suffice it to say we decided to buy a new car instead of deal with possible future issues). It was remarkably hard not to sink into a hole of sadness and frustration. My mind went to fears of, what's next? Will we be home for Christmas? Will he need another, even more intense, transplant? Those questions swimming through my head and despite my remarkable ability to keep level headed among even the worst of news, it's hard not to go there, and really it's healthy to go there a little bit and acknowledge reality and consider options even just to know that there are some options. But I should know by now from a lifetime of experience that, just when something seems to be too much and too overwhelming, that's when things change and life brings either redemption or a new challenge. Thankfully, in this case, things changed for the better. Remarkably incredibly better. And a week after that overwhelming day, we were all living at home again after five months apart. Less than two weeks after that day when I thought it might never end, he received his last transfusion of blood an platelets yet I hesitate to say his last ever although every day that is looking more and more probable. It has been 24 days since he had any sort of transfusion, that last one was transfusion number 99, I have to let that sink it because it is most definitely a wow moment for me to realize how far he has come in such a short time. His liver and spleen are completely normal and now he is making his own red cells, white cells and platelets. Not quite enough yet but his body is working hard and her stem cells are working their magic in a huge way. So to be home for Christmas was just overwhelming in the most wonderful sense. I found myself feeling emotional over every little thing, reliving what the past six months has brought us, looking to a bright future, thinking of the people that have been there... tears! Happy awesome tears!

And on that note, I want to express my gratitude to the huge number of people who helped in a multitude of ways over the past six months. Saying thank you seems so insignificant in light of how much you all have meant to us. Every card, every message, every gesture of any and every kind brightened our day in a way that words just cannot express. We have been given a tremendous number of delicious meals, gifts for the kids and for us, financial help, amazing gestures of support, words of love and compassion, cards and letters and countless other wonderful gifts. You have lifted us up in ways that I hope you never have to understand because no family should have to go through what we have gone through. My dear friends Alicia and Julie and their amazing families who took care of Jay and Camryn when they were home and who somehow always knew what we needed and gave to us without asking or needing anything in return; they are my fairy godmothers swooping in and helping out when we are most in need. Seriously, I couldn't have done it without their support. To Elena, Megan, Jen and the many others who rallied our friends and gathered food, donations or organized so many things to help us through the hard times when Nate and I were in the hospital. To Jay's Co-Workers who have been surrounded Jay with incredible support and encouragement and furnished the kids with many happy surprises along the way. To Erin and Jennie who have gotten me through some really dark days with your open ears and tremendous compassion... you ladies always have the right words when I needed them most. To Barb and Lydia at Make A Wish, you have brought fun and hope and a great future vision to our lives which is making this next phase feel even more exciting.... and you don't even mind that the kids are often not on their best behavior. To the amazing staff at the Ronald McDonald House who gave us a much needed home for five months. To the selfless blood donors, without whom, Nathan most definitely would not be here. To every person who sent a meal, a card, a gift, a word of support. And of course to the incredible nurses and doctors and to our families. Thank you! I don't think I can ever convey the depths of our gratitude but it will remain in my heart forever and I will absolutely pay it forward.

Being home for the holidays has been wonderful and we had so many "pinch me" moments because it simply felt that good to be here now. It's strange how quickly it all feels normal again. And now the new year is upon us. New Year's Eve is Nathan's 100 days post transplant and we will celebrate that day with a couple very close friends and a cake from Icing Smiles. I am so excited to turn the page and look forward to an amazing future. I keep saying that 2015 is going to be an epic year of fun for our family. We have a lot of making up to do and we are going to enjoy every moment.

He's Not THAT Sick

Now that we are home, I can't help but look at this little boy with so much energy and his huge smile and think... Wow, he's not that sick anymore.

Never mind the bald head or the bag of fluids that he carries 24/7. Or the fact that he just had blood and platelet transfusions before the weekend and is having a remarkably slow (yet also equally miraculous) recovery post transplant. If I can overlook all of that, and really look at him, with his huge smile and abundant energy, that's the sweet spot. That's where I need to focus. But still, it reminds me of many other times when I've had the same thought.

A couple of weeks after Nathan first entered the hospital, a friend suggested that I sign him up for Make A Wish. I initially shrugged it off and said... No, he's not THAT sick. 

Thankfully, I decided that it wouldn't hurt to apply and my little guy has decided that he wants a relaxing vacation in Hawaii where he can see dolphins and whales when he's all better (sidebar, mommy is very happy with that choice). And the amazing people at Make A Wish are already working hard to help make his wish come true when the time is right. Yes, apparently he is that sick. 

Just the other day, we strung on his latest batch of beads. We love the Beads of Courage program. It is just an amazing way to turn a serious medical situation into a story that you can see and measure and process in a very tangible way. His beads are now long enough to be part of our Christmas tree garland. 99 red beads for blood transfusions, 20 yellow beads for each week in the hospital, two bone marrow transplant beads, too many of those sobering white chemotherapy beads and many many other beads each signifying each and every step in his journey. A few hundred beads measuring well over 10 feet in length. More than any person should have to endure in a lifetime, much less the nearly six month journey of a child who is only five years old. But still, I look at him and compare the person to the "story" and can't help but think... He's not THAT sick. 

His beads reach all the way up to the second floor

I often wonder if I am an optimist, a realist or if I'm just in denial. I think it may actually be a little bit of both. It's a thought I've had many times because his physical appearance and behavior has never matched the clinical picture, not by a long shot.

Hearing the stories of other families, seeing with my own eyes the fragility of life and how quickly things can change or learning the heartache of another child who has earned their wings at far too young an age... He's definitely not that sick.

Looking at that smile and that boundless energy despite hemoglobin levels that would make most adults curl up into a ball in bed all day.... He's really not that sick. 

Then I count those beads, and retell the tremendous story of the past five and a half months of his life. Yeah, maybe he is that sick... but also he's not. 

The good news is that he's on the road to recovery. No, he's not even close to being all better and progress continues at a snail's pace. I think there is a false sense of his progress in the fact that we are home as I get lots of calls and messages from people who are excited that he's better. I shrug, I get it, but if they only knew the story of this boy as deeply as I do. Yes, some things are really really better. We are home, we are together, he can run and jump and play and pretend that life is as it was before. But still, he will never be that carefree little boy that he was on the evening of June 18th and he has a long way to go before he can truly live life again. A life where he's not bound by clinic visits, medication schedules and huge bags of fluid tethered to his picc line. A life where I don't run for cover and slather him in antibacterial spray any time another person so much as sniffles. A life where he can really plan for that amazing wish trip or even go out in public without me having a mini panic attack in the process. But I can see it in our future, maybe just beyond our grasp, and I cannot wait for more of those small milestones that tell me it's coming. The day when I'm no longer comparing the child to the clinical data and reconciling the vast gulf between the two. When I not only know in my heart that he's not that sick, but that he is all better and even better than ever. Because you cannot go through what he has gone through without coming out of it stronger, more joyful and more acutely aware of the beauty that lies in each and every moment on this amazing earth.