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.
Monday, December 29, 2014
Tuesday, December 9, 2014
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.
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.
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 |
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.
Subscribe to:
Posts (Atom)