Sep 8, 2017

{All is Well!}

So...I don't know if anyone really checks this often anymore. We have been updating Isaac's transplant journey through a facebook group, but thought I should let you all know we are alive and well here, too!

The bone marrow transplant was completely successful and Isaac is doing great.  He just started school again earlier this week.

The past year has really been a whirlwind, and even once we were able to come home, it was still a lot more isolating than we originally thought. One of the side effects of the medicines Isaac was on all summer is that he became SUPER sensitive to sunlight - like even light that snuck through our closed blinds. It was really so extreme we just had to laugh. So we spent a lot of time in a dark house slathered in tons of sunscreen. We would still go outside, but it was pretty exceptional occasions and we always were weighing pretty heavily if it would be worth the blisters Isaac was going to get. But as of early August, Isaac had an immune study test and his immune system, after 9 months, finally rebuilt itself and we are off of those meds and able to see the sun again! After that appointment we were also given the okay for him to be back in school and to not have to wear his mask anymore.

What a crazy season. But even with the sunlight and getting stir crazy inside we haven't ceased to be thankful for a successful transplant. I've gone through parts of my blog today and tried to update a few things - some of the pages were really out of date, but I've still only done it halfway. Its hard to put everything in your heart in writing. At least it is for me.

Coming up next, is hopefully meeting our bone marrow donor!!! We are signing all the paperwork that says we want to meet him, but he has to do the same as well for it to work out. We want to give him all the hugs, and maybe some tears in person if we can. We're also working on planning the boys double birthday party (2 and 6!) And we are doing another 5k with Be the Match - tomorrow, actually! And our 1 year post transplant appointments, plus a few others in December. We might be at Ronald McDonald again at Christmas time, and I'm not too sad about it. They make it a magic land for the kids. Okay. And adults.

Thats all for now! Thanks for taking the time to read another update :)

Sep 19, 2016

{i've left you on the edge of your seats for a year!}

So, hi. I have to say, I just reread my post below, for the first time since I wrote it - and that was seriously intense. I didn't realize I had left things like that on here. I'm glad I was honest still, but wow. More and more I just long for transparency, even if it means I might disappoint people. Or risk being misunderstood. I wrote most of this stuff below a few days ago, and I am so tempted to delete almost all of it - leaving out everything personal and just telling you the facts. I'm going to talk a lot about Jesus, so if you don't want to hear that you can skip to the bottom and I have an Isaac update. But I just don't feel like I can give you an update on my family anymore without trying to tell you some of my heart behind everything. Its a mess, though. Word vomit everywhere. Maybe it will feel too shallow to you. Or weird. Or just confusing. Or maybe it will be encouraging. I'm so overwhelmed by all that I'm feeling, I have this pit in my stomach thinking about how I can't even begin to say a tenth of what I want to. I'm typing this all up quickly, hoping it will just flow from my heart. I don't want to overthink anything. I've been talking to Jesus about how to share about our year. People have asked how we're doing, and in more casual conversations I've said that we're doing really well. And truly, we are. I have never felt more empowered and content as a mom. Even though the craziness has doubled - maybe tripled with Levi being born.

So a little refection here. I've shared some of this so it's probably not a huge surprise. My last couple years have been every emotion everywhere. I would go through long stretches of time feeling so victimized that it was hard to be around other people. Especially other moms. I was exhausted. Noon would roll around and it felt like I would never make it to the end of the day with enough energy to take care of Isaac. So with two it should be even worse, right? But my heart feels nothing but gratefulness. Because I look back now and realize that Jesus changed/is changing me without me really consciously trying. That sounds like a crazy person, but its true. I never would have believed someone if they had said it before. Its been so effortless - but also not really, because we've been really intentional this year. We've made a lot of big life changes - it would maybe seem like we've given up a lot if we sat down and told you everything. We've reprioritized a lot, but its all been worth it. Reading what I've posted in the past feels like a different person. All of the mental strain and anxiety that used to zap my energy and leave me exhausted and reclusive is left with peace. Some days still feel like we do well to eat. And just get by in dirty clothes. And not get out of the house. I still want to get better, but even those days are so precious. I value so much in my boys, and each day we spend together, even if its just at home - with all of my good intentions and nothing gets done, I am so happy for the day. It's amazing. And not really me or natural at all.

So last fall - it was one of the lowest lows of my entire life, but also in the middle of it all was the little joy that is Levi. It seemed like the worst timing, but he brought something sweet to the season. I don't know if I really ever shared this - maybe it was implied, but Daniel and I would look at Isaac at points last fall and I really thought I was watching him die. Each day it seemed like he was getting worse. He kept digressing. There was a several month period where he got so weak he couldn't walk and I began to think I would never see him walk again. I really was preparing for him to leave us, and I got a little crazy. Everything was so out of my control. I was so angry and wondered why God would make a child suffer just to teach me a lesson. I really didn't understand Him at all. I felt completely broken. So out of control.  I don't know where I'm going with all of that, because obviously, Jesus saw me, when I accused him and had given up praying because it really didn't matter. None of that was true. I started to see the Fathers heart towards me. I decided for truly the first time to try (its hard) to read my Bible like it was for the first time. So many people have such wisdom, but I didn't want to look at it through others opinions for the moment. I wanted to read for myself and understand. Leaving my personal experience out of it even, and just see who HE really is. I don't even have words to explain this year. Its not all about healing, though I do believe Jesus is a healer. Its not all about everything going perfectly for me and life just being easy, although I don't believe God is the author of sickness or so many of the hurts I've always accused him of (I know that's a hot button, I'm sorry. Being overly real here). Its about relationship. Its about knowing He loves me. And even if I'm not experiencing what He says, I am growing, and his word is bigger than my experience.

 I don't like posting a lot about 'religion' because its so personal to people. I will chicken out of so many conversations because I don't want to offend. I don't like confrontation. I don't want people debating with me or each other in comments. It often looks angry and scared. Scared to be wrong. Or scared for me that I am wrong and not understanding things. And I don't want to be looked on as crazy, right?! I like maintaining just...a normalness. I don't have to stand out. I'd actually prefer not to. No making a scene. I stress over not wanting to sound insensitive. I am hyper aware of how everything that leaves my lips - or that I type would come across to a dozen different people. I'm just leaving this with a bunch of open ended, half thoughts, but you probably get a bit of where I'm coming from...

I'm saying all of this to just be real with the roller coaster of the last five years and how last fall, it finally was really breaking me and how I feel none (sometimes it tries to creep back in, but not for long) of that now. I'm waking up each day and I know what my life looks like. I should be so afraid. So unhappy. So scared, but I'm not.

Isaac has had an incredible year. Everything has multiplied. At the beginning of the year he was too weak to walk, and last night I watched him run around our yard with the neighbors playing soccer. We have conversations. Each day he just freaks me out with all of the new little sayings he is picking up. His mind is so sweet and amazing and he's growing - and is just a little person. He turns 5 in a few weeks. He is absolutely obsessed with jousting. And organizing his motorcycles. And pirates. And sports - much to the dismay of both of his parents. He has had a banner year. We have watched him flourish and watched his blood counts go from this fall - bone marrow failure, to seeing them increase, and to go six months without a transfusion (a miracle).

So I guess this is where I'm getting to, finally. Isaac was originally supposed to have his bone marrow transplant early in March of this year. He had a central line put in (still has it) and everything, but he was thriving, so we pushed back and it was delayed. But the last few months things have dropped again. He still does so amazing - everyone says he looks healthy and is doing SO good.We still have him in school. I think he IS doing awesome. But then we get blood draws that are still very low. Our doctors reached out to us in July and they were wanting to talk transplant again. It has been the dreaded word of the past 5 years. Anyways. We talked a lot, and Isaac is scheduled to have his bone marrow transplant towards the end of October. He has a 9/10 match. We don't know anything about his donor yet, but we are very grateful he has one! If you see us in the next few weeks - we don't mind talking about it, just please be aware that Isaac is always listening and we are slowly working towards talking him through things, but he still doesn't know much yet. He is such a smarty...

Some people know and some don't. It's a good thing if you don't have to know. But a bone marrow transplant, on paper (each kid is slightly different) means hospital workups a few weeks prior to transplant to make sure there are no infections, surprises etc...Our workups spread over about 2.5 weeks. Then chemo for a week, then the BMT which actually feels like just about the easiest part of the process. The donor cells go through the central line and start growing new bone marrow. Some kids have a difficult time with the new marrow grafting. Or antibodies want to attack the new cells. Lots of intense stuff there. Our doctors are big time considering Isaacs kidney since the whole process is hard on your body, and can be really hard on kidneys. A lot of you know that the (amazing) doctors that we have also aren't anywhere close to home, so I will be in Ohio with Isaac from October until an undetermined time - the goal is February. Our family will be divided for awhile, and I'd be lying if I said I haven't cried at the most random times at the thought of being away from Levi (and of course Daniel) - but we are going to be okay. More than okay. We are going to have some really long days ahead of us - a lot of them wont be fun. I would never choose to be in a hospital over Christmas, but we are going to make it the most amazing time we can. And I have nerf guns and have been working on my dancing skills :) Isaac will never be bored. If we have to be there, I'm planning to come out as pure gold. To grow, and love and be strong and expect miracles all along the way. It sounds unrealistic on paper. Time will tell. Whats for sure is that we have quite a crazy fall and winter again ahead of us!

So now you all know. We have a page up on Facebook to keep people updated. Its private, but if you want to follow along on the crazy journey, request to be added and you're in! We wont be updating much on instagram or our usual facebook pages, or even my blog, so that will be the way to keep updated if you would like. Here's the link: Isaac Gets New Blood

Thanks for bearing with me and caring enough to read everything. So much love to you our family and friends <3

Dec 8, 2015

0, 4, 27, 28

well there are officially four colemans and our birthdays are officially all within 6 weeks of each other. yikes! levi emory decided he was too snuggly in my tummy to meet his grandparents and great grandparents that had traveled to meet him, so he made his debut one week past my due date and exactly one day after everyone left town! he has filled our last couple of months with little rays of happiness in the middle of some of our most weary times.

i started writing a blog post awhile ago - mostly about levi. i didn't think it would be possible for my heart to love another little boy so much. every parent says that, and they somehow make room, i know. i still wondered though, but our hearts have swelled to let in another little person. so in light of how much i love this new little one, who is 10 weeks old, and growing much too quickly on me already, most of this post is, once again going to be about isaac, and is going to be SO massively long, and i think i will still not even begin to tell you what the last couple of months have been like. i'm giving you the abridged version still! forgive me in advance please for any crazy spellings and things that just generally make no sense whatsoever. i'm sure there will be a few.

our story begins back in july. since then we have been having varying degrees of trouble with isaacs shunt (the line that drains the swelling from his brain down into his stomach cavity) - so after 6 or so trips to the doctors office. maybe more? and a trip to the ER, with irritation/infection and finally swelling and puss (sorry) along the line, and also isaac not being able to wear his hearing aid for two weeks because it was causing even more irritation, we finally decided that we just needed to do a surgery to remove the shunt. the hope was that once it was removed, isaac's body had MAYBE just maybe learned to adapt and he wouldn't even need it anymore, which would have been awesome. the surgery ended up happening quite quickly after a few middle of the night scares, so on daniels birthday we woke up bright and early and whisked our family off to the OR.

after a weeks hospital stay it was decided that isaac was shunt dependent. we learned this quite quickly because he would throw up and become irritable with the slightest pressure change. so by the end of that week a new shunt was placed, a bit unconventionally - on the other side of his head and with the valve in his chest to avoid potential irritation from things like little isaac hands plus his hearing aid band. we had a few hiccups right after surgery, but we finally pushed to go home. isaac was so sad and constantly asking us to leave and hadn't moved in nearly two weeks in his hospital bed, so home we went! he has always done better recovering at home, so we had hoped that being back and reuniting our family would perk him up again and be the extra boost he needed to heal quickly. only this time he didn't seem to make much positive progress. in fairness, he had also never been in the hospital for 11 days either, so we kept thinking that maybe it was just taking longer, and maybe he was feeling a bit depressed after a two surgery stay. so we tried extra hard to be peppy and give him things to look forward to each day, but without much progress.

after just a week, i woke up to give him a squeeze and he was absolutely burning up. he ended up having a fever of 104.7, so we got him to the pediatrician, who tried to refer us to our childrens hopstial - which was FULL (our month was full of little crazy stories like this one)! by this time isaacs fever has passed 105 and we were told we would need to sit in the lobby of the hospital until a room became available. i'm getting pretty good at working some magic, so that wasn't an okay answer. i made a few different calls and isaac had a room by the time daniel got him to the hospital. after a very long night and lots of testing, the uti we thought isaac had ended up being a kidney infection (sad news for someone with one kidney that only functions at 40% anyways) and THAT ended up being a blood infection. and a particularly nasty strain of one at that. anything to us that has to do with blood is automatically freaky, so this was scary news. but we had excellent doctors that week and we got an antibiotic that seemed to knock it out quickly and completely.

one more 5 day hospital stay under our belts, that ended with us putting isaac under anesthesia once again so we could put in a PICC line to administer his antibiotic intravenously. its not the bubblegum tasting kind. this stuff was pretty intense. we had literally run out of veins after a month of poking him and adding multiple IV lines, so the PICC - as much as i have been dreading the day, has been a lifesaver this past month! for two more weeks at home, every 8 hours i would start the hour long process of washing hands/putting on gloves/cleaning the PICC line/saline/administering antibiotics/wash hands again/put on new gloves/saline/heprin. (have i mentioned that im going to be a nurse someday?) we wrapped up the day before thanksgiving and that was seriously something to be thankful for!! after all that, we thought that surely now, isaac would be feeling better and begin to recover. but that would just be too easy, right?

pretty much since we got home from his shunt surgery, he would occasionally throw up. but he had so much going on, it made sense that his body would just be in shock. then after the blood infection it became a little more of a regular occurrence (every 3 or so days). so we talked to doctors and nurses and blamed the antibiotic. thats a lot for such a tiny body! we put him on a probiotic and started to actively work towards restoring his gut health. but things didn't get better, and even got worse. things on that front have continued to worsen even in spite of all of the doctors we've talked to and all the things we've tried. then this past sunday he woke up and seemed very sick. we made calls. we spent an entire afternoon trying to collect a urine sample to check for another UTI, and then we started off our monday by visiting the pediatrician to talk thru whats been happening. we all had theories, and we left with another antibiotic and a nebulizer that isaac calls 'the scary hippo'. it is shaped like a hippo to be more fun, but the extra loud vibrating noise and smoke coming out of the end seemed to convince isaac that it wasn't something he wanted to have anything to do with. so with our new ideas and a bit of hope, we left! and tried to talk isaac into thinking the hippo was okay...

which brings us to today. this morning after daniel went to work i got isaac up and he greeted me with vomit down my shirt (a very common occasion lately. we don't stress anymore). as today wore on he became more and more irritable and lethargic and complained nonstop about his forehead and eyes hurting. we watched christmas movies and snuggled in between all of the doctor calls to try and distract him, but one thing became very clear: after a month of documenting EVERYTHING. every bite he's taken. how long he sleeps. when he throws up. when hes happy. when hes sad. we finally are sure of whats going on...all this time in the back of our minds we've been thinking 'his shunt already isn't working' but we didn't know for sure. and his surgeons office was never concerned when we called because of how infrequently he was throwing up. we've exhausted every other non-surgical option and this is the only one left and he is starting to show other, very clear symptoms now, too: lethargic. irritable/irregular behavior. 'projectile vomiting'. pressure in his head/severe headaches. i realized too, that for all of my charting this past month, i never put two and two together to realize that almost 100% of the times he has thrown up has been when there has been a change in elevation (mostly us picking him up after he's been laying down, or when he wakes up in the morning). it seems simple thinking about it now. we had just so hoped that this wasn't the problem...

so this is where we stand. isaac has spent almost half of a year working towards getting his shunt working again, and its still not. he has quickly moved from being stable, to severe bone marrow failure. his platelets in particular are floating right around 20k and we are transfusing him to keep his hemoglobin in a safe range every couple of weeks. he has lost more than a pound and a half since his surgery 6 weeks ago (super significant for us). he has digressed in physical skills - he hasn't walked since the day we took him in for surgery. his speech has become sloppier. overall, the kid just needs a break. my heart just hurts so much for him. especially at the age he's at - old enough to know that things are scary and happening that he doesn't like, but not old enough to reason with him, or to explain why they're happening. or to tell us how he's feeling or what hurts.

we've thought a lot in the past several months about what the future will hold for isaac. and for us. we are all pretty traumatized. it's hard to share with other people what we're feeling and going through.
life right now is a low. we have moments of happiness, but overall, its a season of getting 4-5 hours of interrupted sleep. drinking coffee until it comes out our veins and going to bed feeling like things are just getting worse. and trying to love on a sweet newborn in the middle of it all. i'm still hopeful for a future for isaac. but if you haven't already figured it out - things aren't going well right now. his body isn't healthy. its easy to think sometimes that i can control things with him. if we feed him healthy enough or just see the right specialists that things will go better, or at least he'll be okay just a little longer. i like to know that things are under control, and things just aren't anymore. there is very little that i feel like i can contribute towards making isaacs body better. we will do what we can for every moment, but i am reminded more and more that his days aren't up to me really. each morning, i watch him looking sicker and i feel so aware of my limitations. isaac was always our little gift. if you don't believe in god and are reading this, it might sound ignorant, or just weird, but i am (more/mostly/most of the time) trusting god for what isaacs life will look like, however long or short. and i don't think i've really wanted to trust him in a long time, but i'm out of other options, and it feels like a good place to be.

if we don't have much longer, i won't let myself live with regrets about any of this. i am finally able to look in the mirror and say that i am a ridiculously incredible mother to the two little people i am called to parent and love. i am so far from perfect, but i do the best i can. there are other moms that would be more structured, or remember to change diapers more often, or could maybe survive on less caffeine, or keep stacks of dishes out of her sink - maybe i can work towards that in a different life season, but not right now.

so our very next step is an MRI first thing in the morning. a lot of what our month is going to look like will depend on how things go tomorrow. we have a very capable surgeon here, but isaac is extra complicated, and we really need doctors that will look at him holistically, especially as he gets sicker, so we are praying for definite direction. if we don't feel great about how aggressively or seriously they are treating this shunt situation, we will probably be packing up our bags for ohio before the end of the week - providing they are able to take us there. so i would imagine, and honestly hope the way things are right now that we have a shunt revision in our very near future. pray for us if you think of it. we need some clear direction this week!

Sep 17, 2015

{an update on the coleman clan, which is mostly isaac}

we are expecting the arrival of little levi coleman any day now, so i thought i would give one more 'just isaac' update before we become a legit family of four.

we've had an exceptionally full past six months with isaac and have added a few new steps to our daily routine, so i'll update as well as i can. every post anymore is titled 'another update'! my brain begins to lack creativity by the time i finish typing up everything. i always think i want to come up with a fun, witty little title, but who has time for that?!

we made another trip to cincinnati at the end of may, as i had mentioned in my last post, and traded isaacs ng feeding tube out for a more permanent g tube. that was a little more of a learning curve than i had expected - learning how to clean it and take care of it and how to check the balloon (if you don't have to know, don't even worry about it :p) and to change out the tube. its been four months now and we've just established what i think is the best nightly routine that takes the least amount of time. up until a few weeks ago we would wait until he fell asleep to get his feeding tube running, and if he was having an off night i could be waiting up at 1 in the morning for him to fall back asleep or fishing around under his covers for his tube extension trying not to wake him up, so what we have going now is SO much easier, i can't believe it took us this long to decide that the best idea would be to just get everything going at bedtime and let him be apart of the process.

the original thought was that i really didn't want him knowing that he would be fed even if he didn't eat during the day. i worried that he would start to rely on the g tube and start thinking eating was a hassle, but so far that hasn't been the case and i think he actually likes helping with that part of bedtime now. so g tube for the win! we were so reluctant to put it in all these years, but it is such a huge load off of my plate to not have to stress over how little he is eating every hour of the day!

along with the g tube, we also did the surgery that is hopefully helping with his kidney reflux - i say hopefully because we actually need to have a VCUG (x-ray study that checks the reflux) done to see if it was actually a successful surgery. we had a wonderful surgeon, but isaacs reflux was pretty intense, so we knew going into it that it might not work. we should know that in the next few months though - whenever we actually decide to get the study scheduled. we just like to pack in as many proceedures as possible if you haven't noticed, so we don't have any more days at the doctor than we have to. but that will happen relatively soon...

he also had a growth hormone study (finally!!! and successfully!!) done on that trip. we tried doing this same study about a year and a half ago, and ironically, after a few hours, were told that isaac was too small and they weren't able to get enough blood for it. i just have to laugh at that one. but this time it worked just BARELY. his vein blew at the very tail end of the 6 hour study and we had a mess of blood everywhere (sorry) but they were able to get JUST enough to confirm that isaac's body doesn't make enough growth hormone (no one was surprised, but we had to know for sure). by mid june we were able to start growth hormones with him. its a shot that we give him in his leg every night. it takes both daniel and i to give it - one person to hold isaacs leg still and one person to give the shot. every night we tell isaac it will make him big and strong. he is becoming braver about it all the time. the trickiest part is that you have to hold it in his leg for 5 seconds, so especially at first, that seemed almost impossible. we all had frayed bedtime nerves for awhile, and i have always been squeamish around needles, so its taken me up until about the past two weeks to get the nerve to be quick about it and not overthink things. we've had a few nights where i've had to ask friends to help me when daniel's been gone - and vice versa. i'm sorry friends! because, fun fact, your body (or a kids body) makes growth hormone when you sleep, so you want to follow that same natural rhythm with this. so it really has to, or should be, a bedtime thing. so there is a little glimpse at our crazy nights. between that and the g tube. we've been working on going on more daytime and brunch sort of dates as you can probably imagine ;)

a great piece of news is that in a few of my last updates, isaacs blood counts were dropping quite quickly and we thought he would need a bone marrow transplant this summer - we were bracing ourselves for july and had started looking for bone marrow donor matches. but as we continued to get blood draws, his platelets jumped back up - they've been up and down since, still in a downward trend, but for now we are in a safe zone. his hemoglobin (red blood /// carries oxygen thru your body) however started dropping pretty significantly once his platelets increased and at the end of june we had to take isaac in for a transfusion that boosted his hemoglobin.

the difference in isaac to daniel and i was actually pretty incredible. his skin had started looking a tinge yellow and jaundice before that point and immediately afterwards his cheeks flushed and his skin turned warm and rosy and his energy levels popped back up and made his moods more consistent - i think he had just been crashing energy-wise before that and would just become incredibly irritable when his body was tired (just like a toddler anyways, right?) so it was really great to see how much it helped him! the bummer is that you really don't want to have to transfuse a kid that needs a bone marrow transplant a lot. theres not a specific number of times that would be considered okay, but the more you do, the more likely that the donated blood will interfere with a transplant. basically less is more, but obviously, he needed it and we aren't going to deny him blood! (kind of funny, because come transfusion day the blood bank actually did...long story, but it eventually all worked out!)

that transfusion lasted about two and a half months and he just needed another this past week - it ends up being an all day affair so i'm glad we were able to get it done before levi got here and it was also just in time for him to start preschool with an extra energy boost.

the very last big thing is that with a little brother on the way and his hemoglobin dropping - we decided to put isaac on androgens. its a route that we didn't think we would have taken two years ago, or really even six months ago, but with a baby on the way, plus isaac still being so small (even though he has gained 2 pounds and has grown an inch and a half since june between his g tube and growth hormones. crazy progress for us!) and also just as daniel and i think about the transplant process with him where he is developmentally and being able to communicate feelings and hurts and understanding what would be happening to him, we're just not ready to let him go into bone marrow failure without a fight right now. there are pros and cons to everything, but a lot of studies with androgens and fanconi anemia have been really positive and we were able to get a lot more info over the summer at camp that made us decide it was an option we wanted to pursue. they only have about a 50/50 shot at working, but if it does, it should boost his hemoglobin, which would mean hopefully no transfusions for awhile, or much fewer and farther between, and it could potentially help stabilize his kidneys and just keep him overall a bit healthier for an undetermined amount of time. it takes about 3 months before we will know if they are even going to work for him, which would put us at about mid december. if they do work, it could buy us six months of some stability, or a year, or 3 years. everyones body responds so differently theres just really no way of knowing. but we are used to living in limbo at this point, so we'll take it month by month and see what happens!

even as things have become a lot more complicated for isaac medically, i feel like we're in a really sweet place with him. he is as feisty and stubborn as ever and sometimes hurts my feelings and makes me cry (truth) but he is also walking and talking and exploding with moments of sweetness and hugs and kisses that make up for it all. as he gets older, we've realized that isaacs disease is becoming, to daniel and i, less about what it does to us, although lets be real, it adds a whole lot of crazy, and more about how we just hate this for him. he's understanding more and as everything in you as a parent wants to protect your kid, there are just so many things we can't protect him from. so we keep trying to make all of the in betweens special and filled with a little extra fun when we have the energy. i'm so thankful god has given us nearly 4 years with him so far. i also think another little person in the house is going to be a really good thing for all three of us :)

hopefully i'll not let another 6 months pass before i at least post a family photo!

{photos above: the bottom picture is how isaac will now pose every time i say i want to take a picture for him. arm up against something + legs crossed. he is olan mills picture perfect}

May 11, 2015

{happy 3 1/2 years little bean}

i feel like i'm forever saying 'thank you' all for the prayers and your sweet words we've received the past few months! we are so blessed by all of the support from friends and strangers alike. and are always humbled to hear how isaac has touched people. i just wanted to give another update. we don't have anything really big to report on the medical end of things - and that's a good thing in my mind :)

this past month we celebrated isaacs half birthday on april 3rd. we've always done half birthdays. a year just seems to long to go without making a big hoorah of things. this year was a bit more low key for us. just daniel, me and isaac - we made sure the day was filled with a lot of his favorite things - kite flying, (he actually just really likes the idea of flying kites more than actually doing it. mary poppins has romanticized the idea to him, i'm pretty sure...) airplane watching, picnicing at the park and lots of family time and snuggles.

overall things are going really well with his NG tube (the tube in his nose. or tube that WAS in his nose. he pulled it out this past weekend somehow). we had a lot of really long, partly sleepless nights the first week and a half or so just trying to get a good system worked out, but i think we are finally into a sort of rhythm. the hope was that he would tolerate the extra formula at night first off, and also that he would gain weight. the first has proven to be true, and he IS gaining the tiniest bit of weight - just very slowly. i think we've upped him about 6 oz in a month and a half? it changes a bit depending on the day, but for isaac, thats actually pretty significant. every extra ounce represents countless missed hours of sleep from mom and dad. we don't take it for granted :)

we have a big summer celebration (doctor week) this week. i think after that we'll know a lot more and have a better course of direction for the year. the hopes with this coming trip are: positive, or at least hopeful results from isaacs bone marrow biopsy, successful surgeries (two of them, one to replace his NG tube with a more permanent G tube in his tummy) and the second to hopefully help with all of the reflux going into his kidneys. then hopefully by the end of the week we'll have enough answers from all of our appointments that we will be able to plan, at least a little of what this year will look like for us - and also whether or not we'll be looking at a bone marrow transplant in the next few months.

oh. one more big family announcement. isaac is not only going to be a big brother, but i'm already half way thru pregnancy number two!! our house is going to be full of boys! and so far he is looking healthy. we can't know anything for sure until after he's born, but so far we're really encouraged and excited. i'm pretty sure we have a name, but we're going to try to keep it a surprise this time around.

so LOTS going on. i'll post a better update sometime next week.

much love from the coleman clan!

Mar 28, 2015

{cincinnati & a change of plans}

one of the things i wanted to do more of this year was updating my blog again. its been on my list of things to sit down and do. more little, fun updates. well this one isn't that. daniel and i actually tag teamed writing this one, so if there are bits that don't sound quite like me - its probably him! he did most of the actual medical update pieces. he's better at simplifying those things. 

this past week we drove up to cincinnati - they have a really incredible childrens hospital and we've started transferring some of isaacs care there this past december. the original plan was to knock out a bunch of annual testing at once to cut down on some of the frequent specialist follow-ups we have at home. so while that did happen, we also just about doubled our expected time in the hospital as we kept finding out things that were unexpected. and just as a disclaimer, each of the doctors we met with were absolutely fantastic. they took their time with us and were kind and concerned and they all worked together to help us decide what steps we need to take for isaac, which meant the world to us. so all that said. all of the x-rays, mri's, blood draws and talks we had this week led us to some of the following, sort of in order of when we learned them:

  • Isaac's pituitary gland is irregular. This was no surprise for us, as this gland is responsible for growth and Isaac is off-the-charts small for his age (even for FA). But an MRI showed amorphous tissue formations where the gland should be. Testing is underway to see just how dysfunctional it is so we'll know how much to counteract it with medicine/treatment.
  • Isaac needs to get more calories in him. Even though his small size may be largely due to growth hormone deficiency, he still needs more nutrition for sustained growth. And with all of the eating issues inherent to FA, it'd be almost impossible to get him to eat enough orally. Sooooo, we're going down the path of a feeding tube. He's got a temporary NG-tube going into his nose now, which will be testing his body's absorption of supplemental feeding over the next few weeks. Once that's proven, he'll likely have a G-tube surgically installed in his tummy. As much as we'd hoped to NOT have to go this route, I think it's going to relieve pressure on Isaac's eating and make his nutrition more consistent and trackable.  
  • Isaac's ability to empty his bladder isn't great. Instead of pushing urine OUT of his body, some urine is taking the path of least resistance & going back UP to the kidney (called reflux). May not sound like a huge deal, but...
  • Isaac's kidneys are in worse shape than we thought. He was born with 2 fused kidneys on the left side & they're only functioning at about 40% right now between both of them. The reflux that's occurring is dangerous because it can bring bacteria up to the kidneys and damage them with infection. Kidney preservation is key to a successful bone marrow transplant, so we're considering surgery options that can help reduce the reflux and protect the kidneys. But, surgery would be risky right now because...
  • Isaac's blood counts are not looking good. His platelets have dropped significantly in just the last couple months, and his other blood counts are trending downward as well. Our FA team is very concerned and want to monitor him closely over the next couple months to determine if a bone marrow transplant will be necessary sooner than later. We can never exactly predict timing with this, but the time frame we are bracing for at this point is any time in the next month to a year. Because of those concerns...
  • We conducted HLA-typing tests & are currently searching the registry for a genetic match for Isaac. Bone marrow transplants have a much higher chance of success when the donor has very similar genetics to the recipient. We did a preliminary search in Minnesota in 2013 that didn't show any GREAT matches, so we're hoping for some better options this time. We should know more in the next day or two!
so thats some of the nitty gritty. i don't know that we've ever talked on here - for real, about what a bone marrow transplant means for our family. and its all still so fresh, i'm not really feeling like i can give a statement just yet on how we're handling things or what the next few months are going to look like, because it changes all the time. the night we got his results from his blood test we cried ourselves to sleep and the next day it was back to business mode, and trying to keep isaac from being too overwhelmed by all of the tests we had to do. so more on that later. the last year and a half though, have been incredibly peaceful, so i'm grateful we had so much time without having to think about a lot of this. and in the midst of all of the crazy - we still managed to make the time outside of the hospital fun for isaac. we watched movies and saw the aquarium and the zoo and visited cousins. so with that said...more to come soon.

Dec 15, 2014

merry christmas to all! plus we're doing this fundraiser...

Some of you might remember how we did a fun little fundraiser a few years back to help raise money for the incredible organization that is helping to find a cure for Isaac's disorder. This year we actually decided to send out a letter to some friends and family members.

It is SO hard for us to ask for money from you guys. The thought of what people might think getting a fundraiser letter from us was slightly embarrassing and very humbling.  I don't want to be that person. But you know what? We did it. For several reasons.
1.) We really do believe that this organization is doing GREAT things to get us closer to curing Isaac's disease, and LOTS of other cancers as well. We have worked really closely with them since Isaac has been born and we can't say enough incredible things about them.
 2.) Daniel and I have personally been learning more about what it means to be generous people this past year. He leads the way in this, and I'm learning to be a more cheerful giver along the way. Whether we are able to give out of abundance or...well, not abundance.  I'm learning that it can actually be really fun to give financially towards something we care about. Even if what we're able to give seems hardly worth giving. So if you're one of those people that gets a thrill out of giving - this could be for you ;)

Usually I'm the blog writer, but this year Daniel did the writing for us and gave a little past/present/future update with Isaac down below. If you just want a family update, I'm posting this for you. And if you feel like you would want to donate any amount to the Fanconi Anemia Research Fund, that's awesome, too! Plus we got some really fun, 'around the house' Christmas photos taken by an awesome friend, and I wanted to share those, too!

Friends & Family,

Happy (late) Thanksgiving & (early) Christmas! My name is Daniel Coleman and I have the privilege of being Isaac Coleman’s daddy. Receiving this letter indicates that you are someone who has already expressed care for our son in some way, and for that we are thankful. Because of your care, we’d like to provide you with an update on Isaac, as well as a plea for your help.

Isaac’s Past
As you may know, Isaac’s first 2 years of life were pretty harrowing. After discovering swelling on his brain during Mindy’s 19-week ultrasound, we started preparing as best we could for the uncertainty of what was to come. Born in October 2011, Isaac weighed just over 3 pounds and needed lots of immediate attention. He underwent several surgeries & tests within the first 24hrs, including a brain shunt and a colostomy. About a month after birth, with Isaac still in the NICU at the Levine’s Children Center in Charlotte, we received the bittersweet diagnosis of Isaac’s genetic disorder: Fanconi Anemia. I say it was bittersweet because, on the one hand, we were relieved to have some answers to all of Isaac’s seemingly unrelated issues (missing radius bones & thumbs, fused kidneys, stage III kidney failure, imperforate anus, small optic nerves, severe hearing loss, hydrocephalus, small stature, heart abnormalities). But once we found out what that diagnosis would mean for our son long-term, it was a devastating blow for us as a family and a true test of our faith.

Isaac’s Present
Fast forward to now, 10 surgeries and countless follow-ups & therapies later. Isaac is a happy, lively little boy who daily lives up to his name’s biblical meaning of “laughter.” He just celebrated his 3rd birthday with a superhero party. He knows hundreds of words, talking about everything from his all-time favorite animal (walrus) to letting us know when his bone-conduction hearing aid needs the batteries changed. Even though Isaac still weighs just 14 pounds, he’s getting closer and closer to walking on his own, which is amazing considering he never crawled! He just started attending his first preschool class in November, in which he learns alongside several other hearing impaired children for a couple hours a week. Isaac loves getting out and interacting with other kids, whether it’s at our church, at the children's museum down the road from our house, or at our library’s weekly story time. He’s also very musical and is always scooting over to our record player to listen to Mary Poppins, Winnie the Pooh, Raffi or his “Jesus songs,” as he calls them.

These things may seem small & ordinary, but to us, they are HUGE. Isaac’s diagnosis was so rare and so variable that we really didn’t know what to expect for him developmentally. But to have this smart, handsome, energetic little boy in our home for 3 years is something we thank God for as often as we can. It’s easy to take the time we’ve had with him for granted, so Mindy and I are learning how to better seize each day and do everything we can to provide a long, meaningful life for our son.

Isaac's Future
As much as I’d like to end this letter here and say everything is behind us, it’s not. Frankly, Isaac’s future is not bright, and this is why I’m writing to you now. Although he appears to be healthy and has made it through his early battles like a true fighter, his years ahead will be his toughest. Despite what you can see of Isaac’s disease on the outside, Fanconi Anemia is first and foremost a genetic blood disorder. Basically, Isaac has very weak blood that will eventually fail, usually during the later childhood years. He will require a risky Bone Marrow Transplant to totally reset his blood system. And even if he’s able to get an adequate genetic match (preliminary searches were less than encouraging) and the transplant is successful, he’ll face many challenges for the rest of his life. Statistically, Fanconi Anemia patients are fortunate to survive into their 20’s, due to both the complications of the transplant procedure itself and the extremely high susceptibility to cancer post-transplant.

So today, on behalf of my son, I’m asking you to consider supporting the Fanconi Anemia Research Fund (FARF). Not only is this organization our best hope at finding a cure for Isaac’s disease, but it has been a constant source of encouragement and support for our family. They’ve been by our side every step of this journey and we thank God for the work they’ve already done to give families like ours a little bit more hope for our kids’ futures. Any gift you’re able to give towards the furthering of this work would mean so much to us. Thank you for your love for Isaac!

About FARF

Founded in 1989, the mission of the Fanconi Anemia Research Fund is to find effective treatments and a cure for Fanconi Anemia and to provide education and support services to affected families.

-Funded $700k of new grants in 2014, supporting research of FA cell protectors, genetic therapy, early cancer detection, DNA repair and other relevant areas

- Hosted 23rd annual FA Family Meeting in Maine (57 families, 11 first- timers)

- Hosted 26th annual Scientific Symposium (210 scientists from 17 countries)

- 97% of funds come from fundraising of affected families, with 88 cents of every dollar going directly to research/support

- Received highest 4-star rating from Charity Navigator (2012)

Way to Give

Online: (designate to Isaac Coleman)

Fanconi Anemia Research Fund
1801 Willamette Street, Suite 200
Eugene, OR 97401

Phone: 1-888-FANCONI