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

Sep 23, 2014

{camp sunshine and then some...}

 we spent our third year at camp with isaac early in july (i've had this post written forever and just never published it!). every year is better. we feel more connected, less overwhelmed and hopefully learn some things new. it was also the first year that isaac wasn't happy to see us when we came to pick him up from playing with all of his buddies. he had a blast! we spent a bit of time on the front and back ends of our camp trip to travel, as always. visiting friends and exploring the northeast. maine has become one of my favorite places. maybe i would feel differently if we actually ever visited in the winter, though?

just a quick isaac update. he is turning THREE in october!! this past year has been really quite peaceful for us. we've just been soaking up the time together and taking a bit of a break from thinking about FA - as much as possible, at least. right after camp, though, we got a blood test back that was a bit unsettling. one of the things we just have to wait for (a not good kind of waiting, just to clarify) is for his white and red blood cells and his platelet levels to drop. and they have been. we have a huge spreadsheet that we enter in all of his numbers and if you look from the time he was born to now, its been a gradual decline, but in the past four months his platelets have taken a pretty significant drop - for him. its more than we've ever seen. so that was...awful feeling. it was a most unwelcome reality check after a pretty quiet while with him.

but a drop isn't necessarily a huge reason to panic. it just means that we'll need to keep a little closer eye on things. so as a followup, he had a bone marrow biopsy this last month. we hadn't been in a hospital for awhile, and we got to be with him until he fell asleep, which i was SO grateful for, but watching him go under anesthesia was unexpectedly hard! i actually cried as we left the room, which, for some of you that know me, or have read about some of my past struggles with this - thats a big deal! it's been really hard for me the last few years to be expressive. it was my way, i think to try to protect myself from a lot of hurting. it started as a sort of survival thing for me to lock into this emotionless/business mode, but it took awhile to realize that i was also shutting myself off from some joys, too. some of that was really helpful. keeping a clear head talking to doctors was a GOOD thing! but for me, some of it turned out to to not be really healthy. god's been teaching me a lot about that this past year. and i think i'm starting to reach more of an in between again. more like myself :)

but back to the biopsy! isaac was a champ, as always. i didn't need to worry about him :) he's getting older and is so much more alert and knows exactly why we go to hospitals, which i hate for him. but he stayed pretty calm and even woke up saying 'hi' to us. i imagined he would be really sore and upset when he woke up, but he recovered AMAZINGLY and actually since then, has just exploded with so many new words and is counting and singing and starting to walk (with us holding his hands). we have this running joke - daniel and i, but isaacs therapists have actually noticed it too - that every time he has a procedure, his little mind just explodes and he hits some kind of a growing or learning curve. maybe its just that he becomes a little more determined each time, i'm not sure...

he's also starting preschool in a few weeks! sorry i'm just dumping all of this information. it HAS been awhile. its mostly just because his therapies transition from in-home to public schools once he turns three. so we don't know exactly how things will work out yet. we still have a few options to work thru this next week, but it will only be two days a week and all of his therapies - speech, pt, ot will all be done there, which will actually be really great! so if you want to be praying for isaac right now, i'm praying we get connected with a wonderful teacher! maybe i'll post again kind of soon and give you all a preschool update. hopefully so!

Apr 16, 2014

{hello, spring}

another bit of an update. with a very few photos. the year so far has wrapped me up in so many busy things that i haven't taken much time to document all of our going ons.

very quickly, i wanted to make sure i introduced maggie. she is isaac's wonderful little partner in crime. they love to snuggle and he 'secretly' feeds her all of the food he doesn't like to eat at mealtime. i never thought i could have a small dog, but she's growing on me - and very sweet to isaac. he especially likes her nose and sloppy kisses : /

isaac is TALKING now. tons and tons since i last posted.
he would tell you that he is two years old (i-two)
his favorite animal is a walrus and his favorite music is the 'down down' song on his winnie 'the pooh' record. and yes he actually says all of those things! in addition to walruses, he also graced me with the honor of saying 'mama' finally. i am completely convinced that he as been able to say it for quite some time now, but knew that i wanted him to, so he didn't. he absolutely has that sort of a personality ;)

blood counts are still pretty stable and no surgeries in sight! we've had our rough patches in the past few months, but over all it is a really peaceful time right now. we're soaking it all up!

Feb 16, 2014

{Happy New Year!...?}

update time! i'm not even going to apologize for how horribly long its been since i've posted last. keeping up this old blog of mine has just inched its way down on my priority list in the past year. i still love keeping family and friends (and even those of you that we don't know!) updated - just a little less often, now.

we had a wonderful, peaceful holiday time followed by a surgery for isaac at the very beginning of the year. this was actually the LAST 'planned' surgery we have! yippee!!! there will definitely be more - but mostly 'procedures' which is a world of difference. little day trips as opposed to operations. so that is something to be grateful for! this last surgery was a pollicization - which is just a fancy way of saying that they took a finger on his left hand - shortened it, rotated it & moved a few tendons around.

the end result being - isaac is now the proud owner of his own little thumb!!!
the surgery went remarkably well. we left the hospital within 36 hours and isaac seemed to be in very little to NO pain, even right afterwards. the only hiccup in the whole healing process came about a week and a half afterwards - i won't even go into lots of details. its a bit gory. so if you are a bit squeamish (i'm sorry!) you can stop reading. 

the short of it would be that for isaacs thumb to heal - they inserted a 2" rod to stabilize his thumb and casted that to keep him from moving or messing with it. so isaac - while i thought he was asleep got his cast OFF. don't even begin to ask me how this happened. our best guess is that he was scooting around in his crib and somehow wiggled his arm thru one of the bars in the crib and couldn't get it back out and kept pulling until, you know, the cast was just dangling. so i heard screams coming from his room - and found him with blood everywhere - his cast barely on, and realized after a few moments that the pin was stuck in a layer of gauze inside the cast. i grabbed isaac - who was absolutely panicked and screaming and flailing and was trying to figure out how to unhook the pin and then do - i have no idea what, but it seemed like a start - when he just yanked his arm good and hard and pulled the whole pin out himself. that is when i nearly passed out. i am able to keep my head and remain - almost to a fault, emotionally unattached and clearheaded in situations like this, but i just absolutely lost it. i had one arm to hold onto isaac - and the other to call daniel & doctors and figure out how i was going to get to the hospital asap. it took me 5-10 minutes before i was even able to look at his hand -  i was actually afraid maybe he had pulled his thumb off along with the pin - its probably not even really possible, but i wasn't exactly thinking quite clearly at the time either. anyways, the short of it is - i am grateful for our tenants out back - i banged on their door - barely able to function and they just kicked into gear and were getting ready to drive me to the emergency room when my mom showed up. then our doctor called back and daniel got home all within seconds of each other. so we made it a family affair getting downtown to see our surgeon and isaac was all bandaged up again within an hour from start to finish - and praise the lord - no damage done to his thumb thru everything.

isaac was actually incredibly calm - our doctor said the only part that really probably hurt him was pulling out the pin. i think i ended up much more frazzled by the whole thing than he was. SO, the rest of his recovery time was a breeze. he actually saved himself a trip to the doctor by removing the pin himself and his little thumb had already healed up quite nicely. we're working with a therapist now to get him moving it again. its taking some work. he's really sensitive and didn't have great movement with that finger to begin with - but i still think it was a great decision to have it done. it will be worth it! 

otherwise, he is just constantly surprising us. he is a little sponge - and talking SO SO much!!!!! he just soaks up every word we say. he would want you to know that his favorite books are 'go dog go', 'one fish two fish' and 'bears on wheels'. he asks for them constantly. and as a result is absolutely mad about dogs, hats, parties, fish and bikes :) this is the most fun time i've had with him. i feel like i just have a little friend around with me all the time. also though, it is definitely the most challenging. i was forewarned that two year olds were little crazy people, and i'm glad i had a bit of a heads up because some days….wow. i didn't think such massive tantrums were possible. seeing all of the happy pictures i post of him you probably couldn't ever dream of him being cranky but oh yes. he is incredibly good at two. but apart of what makes isaac so amazing and strong is how stubborn and determined he is. and i actually love that about him - but he is testing his stubbornness and i'm trying to learn how to bridle it without crushing it. so that will probably be the rest of my year now ;)

end of way-too-long update.

(above are just a few random photos from the past month. isaac playing my banjo (which he LOVES). his auntie briauna in town for a quick visit and dad snuggles)