Where do I start?

We saw the first neurosurgeon a few weeks ago. He feels strongly that Rainbow's headaches can be managed pharmacologically rather than surgically. This is very desirable because surgery is very very dangerous for Rainbow. We have to see a neurologist to get started figuring out if there is a medication that will work for him. Neurologist isn't scheduling until January. Called around, pretty much everyone who is taking new patients is scheduling roughly that far out. We see the next neurosurgeon Oct 26th. Rainbow is no longer allowed to play on trampolines or in bounce houses because his Chiari Malformation makes those activities dangerous. His trampoline is his favorite thing in our back yard. Suck.

Additionally, Rainbow has a "malformation" of his back (his musculature is very asymmetrical and his spine is slightly "bent"). We showed this to his neurosurgeon and he said "Yeah, that's weird. He needs to see an orthopedist." Is anyone keeping up with the doctor count? Appt with the orthopedist in a few weeks. He also has symptoms the neuro doesn't think are associated with his chiari and may be autoimmune (Pediatric Rheumatologist for that one, add another).

Last week Rainbow had a random (very low) fever, no other symptoms at all. We consulted with his immuno and it resolved on its own and we thought "huh, weird." Last night he woke up freaking out because his head hurt (not really all that new) but when I went to put my hands on his head he was burning up. His temp was 102. We spent a good amount of time on the phone with his immunologist's office (the on-call doc was new to us and was freaking awesome) and three hours on the ledge of "which is more dangerous taking him to the ER or keeping him home?" It took ibuprofen and acetaminophen to break his fever but then he slept from 3am - 7am. Woke up a little grumpy but ate and had no fever.

Dr D's (his immuno) nurse called at 8:15 "how soon can you get him here?" Um... crap, that's not terrifying.

His immuno did a full updated history, spent an hour with us, did a full exam, and.... nothing. Like, seriously, nothing. He doesn't even have a runny nose. That probably sounds like a good thing but to us it's scary. We don't know what we are dealing with.

She ordered bloodwork. Being the boyscouts that we are we were prepared with this numbing cream (don't leave home without it). So, we slathered it on and waited for it to do its work. We went to our usual blood draw lab (how screwed up is that, these people know us on sight) and Raz screamed and screamed and screamed. The phlebotomist hit a vein twice, I saw it, the blood wouldn't come. The phlebotomist's acted like this was the weirdest thing they had ever seen, awesome.

I slumped down to the floor and called his doctor. She didn't want him poked again. He's too worn out. He needs to hydrate like crazy and we will try again tomorrow. If it doesn't work we will have to go to the hospital where they have ultrasounds to do this...

He is sleeping now.

The Neurosurgeon

I do this thing when I'm freaking out. I research. I read and read and read and read and look up terms and read some more. In preparation for this appointment I read every paper this neurosurgeon had published in the last twenty years. I also read a bunch of related papers.

I think I do this because it makes me feel like I have some semblance of control over the situation, and because I'm a scientist. Research is what I do.

The thing is, in all of these papers, cases where Chiari Malformation was successfully managed non-surgically were never mentioned. We went into this appointment certain we were looking at an inevitable neurological surgery, on our immune deficient three year old. On the drive there we were both jumpier than a long tailed cat in a room full of rocking chairs.

So. Much. Fear.

Then, a crazy thing happened. We were given hope. We were given hope that our child may get to live a normal(ish) life without anyone ever slicing his head open...

We spend A LOT of time in doctor's offices. While we've developed strong relationships with Rainbow's regular doctors and feel heard by them anytime we see a new specialist we brace to be rushed and brushed off. It's exhausting and frustrating and infuriating. Dr. Mapstone asked tons of questions, examined Rainbow, then sat with us comfortably in absolutely no rush and talked with us about his evaluation. He took Rainbow's immune deficiency very seriously and factored that into his decision about whether or not to recommend surgery. He answered every question we had honestly. We felt heard and we felt that this doctor was going to make decisions with Rainbow's quality of life and health as his foremost concerns.

The bottom line is that there is a very strong possibility that we will be able to manage Rainbow's Chiari Malformation medically, avoiding surgery, possibly forever. If we can, working with a neurologist, find a medication that manages his pain without unacceptable side-effects then he will have an MRI once a year to evaluate his Chiari and go from there. The doctor made it very clear that if his pain cannot be managed or if he develops other symptoms Rainbow needs to come back to him as soon as possible.

We have a plan.

There are so many unknowns and this neurosurgeon was also very upfront about the controversy in his field regarding the best course of treatment for Chiari. Some of the other neurosurgeons with whom we've consulted are more aggressive in their treatment and we still have an appointment at Dallas Children's next month.

We will be adding three more specialists to his team to evaluate an apparent spinal malformation, to possible remove his "huge" tonsils, and to determine if he has Ehlers Danlos Syndrome or possibly some other condition causing the odd sensations and pain in his limbs.

But... No one is going to be cutting his head open in the foreseeable future and I'll take that.

Until next time...

Eff. Word.

Today Rainbow had an office infusion. We infuse 3 weeks a month at home, the 4th week we have to make the trek to a nearby town, endure a blood draw, and infuse at his immunologists office. We don't usually see his doctor on these monthly sojourns. He has a separate appointment with her every three months or more frequently as needed.

I was running behind the hubs and Rainbow and as I walked into the infusion room hubby looked at me and said "Dr. D is coming to talk to us."

Eff. Word.

That's not good. That's never good.

The thing is just two days ago Rainbow underwent a sedation MRI. His immunologist and a neurologist who spent all of 20 minutes with us (not a fan, in case you can't tell) both suspected he had a certain condition. The MRI was to determine if he did.

He does.

Rainbow has a Chiari Malformation.

His increasing number of migraines, he whole body aches, his frequently "cold" hands and arms... because there is something wrong with his BRAIN.

For ****s sake! Are you serious?!

The treatment is decompression surgery. They will have to cut open my three year old's skull and through his meningies to relieve the pressure of his swelling brain and provide the space for his cerebellum to lift out of his spine.

See cussing above.

We're seeking appointments with at least two Chiari specialists. As much as we are desperate to fix this we are more desperate to be absolutely certain every question is answered, every base is covered, and we secure multiple professional opinions. So, we are likely on a months long journey to major surgery.

Eff. Word.

Until the next crisis...

We Fight

Some time back in a conversation, I think subsequent to one of my FaceBook posts, a few friends and I were discussing our children. We were discussing our love, our fear... our fight. At some point someone said something like "what can we do?" The response "We Fight."

"We need that on a T-shirt" my friend, yoga teacher extraordinaire, and therapist said.

Later, one of the most supportive people I've ever known, a person I've met in person all of twice but loves our family more steadily than most I see every day contacted me. She asked me to create a piece embodying that fight to be used as a fundraiser for our family. For our fight for our rainbow. For our fight for our eldest.

And I did.

And Kathryn Hager at LITTLE h CREATIVE turned it into this amazingness: 

This is for the fighters. I know there is power in our armor. This is why I wear five circlets, permanently inscribed on my skin. Two parents, three precious boys, always 5. This is why my wrists, toenails, and neck are always adorned with orange, for Damon. Why 19 orange flowers flow from my hip, where Damon sat, to my chest where he laid his head for nineteen too-short months. Life, is hard. We fight.

We fight, as a semicolon because it has come to represent the pause. A pause, a choice, to keep fighting. A pause where there could be a stop. This is the endless treatments that stave off the stop, keeping our children alive, beautiful, healing, mentally and physically. This is the quiet desperation of our tears in the silence when we are simply sure we can not keep going, then we do.

Wings of fierce protection encircle the pause. We stand guard over our precious children, buffeting the wind, providing the warmth of our love, giving them every ounce of ourselves in the moments of pause. We protect them, with everything that we are. The wings represent those guardians who encircle us as we stumble, as we cry. Those who give us space and permission and warmth to be who, and what, and wherever we need to be along our path.

We fight so many battles, illness, depression, anxiety, grief... these are just the ones intimate to my struggle. This is for the fighters and, more importantly, what we are fighting for.

You can purchase the shirt here. Please share. I know there is an army of fighters out there.

Until next time...

Chronically Ill

The fact that my child is chronically ill isn't something that I think about a lot.

I think about how to keep him healthy. I think about washing his hands and making sure every vehicle is stocked with sanitizer. I think about making sure we have his infusion meds stocked. I think about his temperature. I pay excruciatingly close attention to his behavior. I'm on alert for any migraine "tells" and a thousand other things but that's just how we live. We live our lives on high alert.

Then, there are times like now.

Now I feel like "chronically ill" is an appropriate moniker.

Most of the time Rainbow lives his life fairly normally. He plays and reads books and goes to the park. Since stabilizing on IgG infusions he even goes to the children's museum. Most of the time the fact that he can't go to pre-school or be around his cousins if they are sick and keeps us all vigilant about sanitization just feels like life. Most of the time it isn't obvious that he is sick.

Then, there are times like now when its obvious he isn't a normal kid, when he fights rolling migraines for two solid days and new symptoms are appearing for which his team has no explanation. Days like today when, despite our fears regarding the list of medications his little body must filter, we can't take even a short break from the meds or he devolves into systemic pain.

Despite all that, because his body doesn't make a key component of his immune system, we have to infuse today.

My child is chronically ill...

I think it's weird how people will try to take that away from us. Much like the way people try to white-wash grief, we are supposed to act like its all ok, we are supposed to say everything will be ok, we are supposed to be strong, "focus on the positive," and only acknowledge those rare cases of people who live "perfectly normal lives."

My son is three, he has endured 76 needle sticks (that actually got documented), 26 nights in the hospital, a lumbar puncture, 17 X-rays/CTs/MRIs, 10 (and counting) infusions, and 56 other various procedures. He has been up in the wee hours of the last two mornings crying because his head and body hurt so badly.

I'm so tired of the cultural expectation that we all act as if our struggles are minor. I'm tired of people's impatience with the suffering of others. In the end, it's entirely selfish.

My grief makes people uncomfortable. Rainbow's illness makes people uncomfortable. Maybe it would be better for our world if we were all a bit more willing to be uncomfortable?

If it isn't obvious by now I'm not in a particularly good place. I'm tired, so damn tired and, on the whole, if you're reading this you've accepted our struggle into your life. For that, I am immensely grateful, more than you will ever know.

Until next time...

The sanctity of Rainbows and Darkness

It's been an eventful few days over here in it's-always-crazy-how-could-it-get-crazier world.

Friday was Rainbow's first home infusion...

It's over and my stomach still turns with anxiety just writing that sentence. I was terrified.

Like, we are going to do this alone? Like, all alone? No back up? No nurses? No cavalry?

What I really wasn't sure about was if I would have to courage to hold my child down while his daddy inserted needles into his thighs in our home. This place is sanctuary. This is my safe place. This is where I come to escape the world, where I don't constantly fear someone sneezing on my rainbow zebra, or tossing a great big grief land mine in my lap (that still happens occasionally but you get my point). This is the place I fight with everything I have to make safe for my family.

I was about to violate that sanctity.

I know what you're thinking... It's to protect him. It's necessary. It's lifesaving for cheezus sake.

Yeah, I know, and he screams

Tears stream down his precious, innocent, three year old face as he yells "I don't want it! PLEASE!"

As I hold. him. down.  and someone hurts him. That someone the last two time has been his Daddy. His superhero. I can't even begin...

Super Daddy preping the infusion medication 

This is after he finaly stopped crying. Can you see how sweaty his hair is? This little man is the face of invisible illness.

The infusion site on his right leg was very painful. If super-Daddy held it in place Rainbow was happy. Daddy sat like that for almost an hour and a half.

Done!!! That's Bumblebee covering our boo-boos.

It's always rough. Every single time I come away emotionally bankrupt and just trying to pull myself through the next few hours, the next day, sometimes the next week. I'm affected by television commercials, I sob over fictional characters, a news story about an earthquake on the other side of the world can put me under for days.

This is my child. My rainbow.

I'm so tired of hurting, of fearing. The words just aren't coming. It's too deep and scary and overwhelming and today I just plain feel beaten. I feel like I can not keep this up.


Fortunately, contrary to my black mood, my rainbow is kicking butt and taking names. Yesterday he woke up and spent most of the morning tearing through the house as a race car or, alternatively, chasing the race car (aka Daddy) as the police car. We got to spend the day with my family celebrating my nephew's 13th(!) birthday. At one point Rainbow was literally (yes, literally) running circles around the coffee table at my Papa's house.

Thus far this is the first infusion of his entire course after which he has experienced no (zip, zero, zilch, not-a-one) systemic side effects. No fever, no nausea, no malaise, no headaches, no body aches. Naaadaaaa. Aaaaand he hasn't had a migraine in almost two weeks. Before this he hadn't gone more than a few days migraine free in two months.

This morning we went to the new splash pad.

Um, cute much?

There was a scary few minutes after we had played for about an hour when Rainbow just kind of shut down. He just wanted to sit. It scared me, a lot. I think he was overwhelmed. I'm really not sure what I was thinking doing the science museum (see adorableness below), an infusion, a birthday party, and the splash pad all in three days. I think I was so excited to give him the opportunity to do stuff. Note to self: do stuff at a slower pace with the Rainbow Zebra. 

The thing I'm continuously learning is to allow each emotion, each place, each moment be its own. The awesomeness that we experienced this weekend, playing outside of our home, no side-effects, are exactly that, awesome. There will come a time, probably soon when I will get to enjoy these happies. 

But I get really tired of having to fight for my sadness. The successes, the happiness, does not negate the sadness. The security in knowing that my son is better protected than ever DOES NOT make the torture he endures less agonizing. It just doesn't. People want it to. People tell you it does. It doesn't. 

Much like grief, the heart simply expands to accommodate both joy and sadness. There are brief moments when they sit together and my soul finds peace. More often than not they are at war. But the most important point is that one is not more valid or valuable than the other. The pain and sadness I feel watching my rainbow endure his treatments is not less precious than the joy I feel when he runs squealing through the house at full tilt. 

The pain sucks, the fear sucks, but these emotions are valid. Please don't try to take them away.

Until next time...

Rainbow update

I haven't written in a long time.

Partially because I'm a level of exhausted I didn't know was humanly possible. I'm one of those people who is too busy to remember to answer text messages or to eat sitting down. I've always hated those people. They make me feel unimportant. At the moment I don't know how to not be one of those people. I'm working on it...

And partially because amid the chaos my shattered mind is working on piecing together what it thinks about some really intense stuff that I'm not willing to sit down and write about yet. Usually when my hands start flying across a keyboard I can't suppress the tumult. I usually don't want to... but this one is too divisive and hurts too much. I'm just not ready.

So... not much writing coming from over here in busy, crazy land.

This morning I am at a coffee shop trying to study for the oral portion of my comprehensive exams. If you don't know what that means you are a blessed individual. Suffice it to say it's the biggest, most terrifying exam of my life. And I CAN NOT focus. See above with the busy and the exhausted...

So what's up with us beyond my mind's constant efforts to keep me as far off-track as possible?

The rainbow had his fourth IV infusion of gamma globulin yesterday. I write a little about his condition here. It is always horrible. The child is only a few days this side of three years old and he has been poked more times than anyone should ever have to endure. Yesterday was worse.

Long story short, our insurance emphatically denied our claim for his medication. Rather than continuing to fight that battle our immunologist worked with our pediatrician to find a way to help us pay for his first three infusions so that he could be enrolled in a clinical trial that will pay for his meds (this stuff is wicked expensive). So, he had to reach a stable point in IV infused medication before he could switch to the clinical trial, which will allow his medication to be delivered subcutaneously (under the skin, NO IVs!!!).

For the past three months, once a month, he has suffered through the insertion of an IV, hours of infusion, then days of side effects post infusion. Drawing blood on a pediatric patient is difficult, threading an IV is... I don't even know... whole lots more difficult.

We are incredibly fortunate that his immunologist is pretty emphatic about being in control of her patient's health. She has an infusion center in her office. She, and her staff, are on hand throughout the process. He isn't infused at a specialty pharmacy or an infusion center that just plugs and chuggs. He sees his doctor or his PA every single visit. This  is apparently quite rare and, holy frick balls, I'm grateful.

The sole downside to this is that his immunologist is not pediatric specifically, therefore, her office does not have pediatric nurses. There is ONE person in the office who can thread his IV (she's amazing by the way). By rainbow's last IV she could hit and thread his IV in one try, which is miraculous. Not this time kids...

Enter back story...

This amazing bright light of a child has endured a host of medical treatments and tests since roughly 30 seconds after birth. He was premature and spent the first month of his life in the NICU, intubations, IVs, wires, UV blankets, alarms... then another month at home on oral caffeine (so his brain wouldn't forget to tell him to breathe) and a bradycardia monitor strapped to his chest (so an alarm would go off incase his brain forgot to tell him to breathe). At ten months old we found out that, as we had feared, his immunoglobulin levels were low. So began blood draws for testing every three months and constant antibiotics, interspersed with flying visits to the E.R. anytime he ran a fever, more sticks, more blood work... A visit to the Mayo Clinic... more sticks, more blood work.

Then, roughly four months ago came the news... this is for real... this isn't transient. He is immunodeficient.

You guessed it.. more sticks, more bloodwork... and now, IVs

All that to say this kid is so very D.O.N.E. and I don't even kind of blame him for a second. He's not even pretending to be patient with our needles anymore. He starts screaming and kicking almost as soon as he sees gloves.

Annnnnnd... a little over a week ago he broke his collar bone.

Freaking out three year old with a broken bone that can't be casted who has to have blood drawn then an IV inserted...

Ugh, is anyone still with me at this point?? So this is where we are. Yesterday we suffered through SEVEN needle sticks. SEVEN!! In. One. Day.

No kid should have to endure what this child endures... none.

Oh, and did I mention the migraines? Yeah, those too because just wtf?

We have pushed through the last four months of horrors to get to next week. Next Thursday he will have his first subcutaneous infusion. This means that he will NOT have to have an IV. He will have to have blood drawn, which really sucks, a lot, but no IV. No more IVs for at least 6 months. I think that is the only thing keeping me from completely and utterly just fricking losing my mind.

I think I'm supposed to write some nice, pretty conclusion where I say something positive and leave you all feeling great about your lives but I just don't have the energy. If you guys have any to spare send some our way. Feeling stupid levels of done.

Until next time...