Making Plans

I am by nature a planner, I re-write my to do list at least every other day and carry around 3 months worth of paper calendars to try and keep track of our therapy, school, doctor schedules.

Cameron has taught me you can't plan for everything and I'm trying to become better at learning how to handle the unknown, in some cases it's become easier to wrap my head around this concept.

For instance I realize that Cameron could suddenly become ill at any time, this fact does not keep us house bound or from enjoying life. It changes some things though, like planning family vacations away from the Children's Memorial area, it gives me pause to leave Cameron overnight without us.

It's hard to find a balance because as any parent needs time away from their children to recharge, many would say those parents of special needs children need it even more.

After all Cameron and Connor need healthy parents in every sense of the word. I'm working on the letting go part, but it's not easy and when question arise relative to Cameron's health and he seems more in limbo, it's really hard to break away.

On August 1st Cameron had another MRI to follow up post surgery, this was 6 weeks since the last one and a huge marker for us. As I sat in Dr. Bowman's office on August 1st taking her through some recent early onset symptoms of a problem for Cameron she showed me the MRI and we agreed it was stable. I shared with her my concerns to leave the Chicago area both with Cameron and without. She said "go, go now, don't look back just go while you can".

And so we did. We green lighted our plans to visit my family in Michigan, some of whom we have not seen in two plus years. One week later Matt and I took a trip sans kids, courtesy of Matt’s company trip (*KBM if you are reading, yes he still works at the contest factory). It was a great trip to Napa Valley all expenses paid, and being that we were engaged there 9 years ago it was a little extra special. Of course there was far more anxiety with this trip having Cameron & Connor not with us, but I am proud to say we did more than survive, we had a wonderful time.

If given the choice I'd always like to make plans well in advance, but I’ve just learned if you have to “green light” a trip with only days before departure, it’s ok. Maybe even better so the anticipation doesn’t build.

A few photos of our travels…

Cameron and his Great Grand Father (Baba) take a nap together .

Baba and 7 of his Great Grandchildren

The Resident FISH Connor!

A Trip to Greenfield Village

Scar Tissue

I recently came across some old CDs with photos from 2005 – 2006, I was delighted to find them, given our family photo history disappeared with my computer during the robbery.

As I began to upload them to the new computer I found tears welling up in my eyes, I have to be honest it caught my by surprise. Paging through the photos of Cameron’s beginning looking back I honestly can’t believe we made it through that first year, especially the first 4 months.

When you are in the moment you have no time to reflect, or process the reality of your situation. Which is for the best, or you likely wouldn’t make it through times of crisis.

As parents to a medically fragile/special needs child people will often comment to us “I don’t know how you do it?” It’s not really a question, despite the punctuation indicating as such, because in my opinion there is no real answer to this question.

Seeing these photos again reminded me of many things, but what was most surprising was I felt like saying to myself “how did you do that?” We’ve survived some of the toughest challenges a parent could ever face. Not without some scars of course.

As time goes by those scars of the past start to heal up as they are surrounded by the joys, the success and the promise of a future you weren’t certain existed. New challenges arise as you continue down this path, whether it be the things that keep us awake at night, the fears about the future or even the really crummy stuff when the intense medical problems rear their ugly heads.

And the scar tissue becomes irritated, sometimes too much and it really, really hurts.

The new wounds are sometimes raw and you’re not sure you’ll survive, but you do, and eventually they too will turn into scars. We must remember this when we are not certain we can make it another day.

This all came full circle for me as I changed Cameron’s clothes the other day, he has several scars, some more prominent than others but all are hidden, be it under his thick locks of hair or his favorite t-shirt. There is one you can barely see anymore, on his belly, the rest are either “fresh” or clearly visible to the naked eye.
Being reminded of the beginning of our journey in photos and then seeing the healed, almost non-existent scar on his belly, it made me smile. It was a sign of how far Cameron has come, and how far we have come. With time I believe all those scars will fade away, but the scar tissue will remain, as a way to protect us all and remind us that we have indeed survived.

This Photo was take in August 2006 within days of his 2nd brain surgery

This photo says it all....

Cameron CAN!

Happy New Year!
We survived the Holidays and salvaged a very nice Christmas after the turmoil that was our Thanksgiving. The boys were in full Christmas spirit, and pretty much bouncing off the walls for the entire week leading up to the big day.

A great Christmas day celebration was had and all wishes were granted, outside of the pink motorcycle that Connor really wanted. He came down and said "Where's my pink motorcycle?" his first lesson in you can't always get what you want. You'll see from the photos this was quickly forgotten once he opened one of several trains.

I'd have to say the best Christmas present of all, outside of not being in the hospital, was the unveiling of the Cameron Can Foundation (see link on the left sidebar) Be sure to check it out, just click on the logos.

We are so grateful to our friends who have worked tirelessly to start this foundation, and plan the inaugural event in March!

Going into January, when all of our deductibles, copays, coinsurance and insurance woes go back to ZERO is one of my least favorite times of year. Everyone else looks at a New Year with such promise, we worry about how all the medical costs headed our way.

But knowing how many people want to help Cameron, and us, well....The weight of the world has been lifted off our shoulders to know that Cameron's future is in good hands.

I personally have always wanted to create a foundation to honor Cameron and how hard he has fought, and will continue to fight the rest of his life. There are many families out there like us who never qualify for financial assistance, charity care and so forth despite life long medical issues. I have tried in vain for the last four years, so I look forward to the day when we can offer grants to other families just like us with the Cameron Can Foundation. Others can realize the reality to keep their hope alive that they too can be certain their child will not be denied therapies, specialists and treatments when the costs become too much to bear.

After our 2010 many people have repeated to me, "2011 is going to be a better year" I have to admit I was skeptical. But over New Year's weekend there was a small glimmer of hope. Everyone in our house got the dreaded stomach flu, except Cameron!

Cameron was a great doctor with the best bedside manner. He made sure all family members had the dreaded "green bowl" when they needed it and was saying the sweetest things to make us feel better. Connor is still convinced there was a dog, a cat, a fly and a spider in his tummy. All courtesy of our recent book choice: "There was an old lady who swallowed a fly".

So for Cameron to be the "missed" this bug, well that's got to be a good sign! Right ?!?! Oh and I found this perfect shirt for him...Happy New Year to all!

WTF!

Yes, I've said it many times in the last two weeks and really there is no better way to describe our reality lately.

Because I am exhausted, don't sleep much anymore and generally miserable at times this post may be very debbie downer.

We broke our hospital free streak Thanksgiving night, we at least got to eat dinner before whisking Cameron off to our "summer home" (aka Children's). It all started out of nowhere when Cameron began throwing up and within an hour he had thrown up 10 times! Calls were made to our pediatrician who sent us to get him imaged given Neurosurgery orders. A constant reminder of life with Hydrocephalus and its struggles

The nasty green bowl was unearthed from the depths of a closet, Cameron's face so pale it didn't take long for us to remember the days of summer when this was a weekly occurrence. Here it was a Holiday and I had stopped his meds about two weeks ago, all the stars were aligning in all the wrong ways.

We quickly packed up the car, I naively had high hopes for an a quick MRI and a return trip home. Yes, despite our history I still have hope.

In the time I pulled out of the driveway to getting on the highway (1 mile) Cameron had thrown up 4 more times.

Naturally MRI was not an option, being a holiday and all, so CT Scan was ordered (which means more exposure to radiation and not being able to compare images in the same modality). Long story short there were no signs of shunt malfunction on imaging and his ventricles were stable in size.

I jumped on the CVS Train I had so happily departed in October, after being a month free of episodes. The doctors cautioned me to not make the leap, there was still much more to rule out.

Easy for everyone else to say. I took him off his meds two weeks prior to a holiday - who does that? I was so sure we were out of the CVS spell, I caused this whole mess. I felt terrible.

After getting bloodwork, IV , and Zofran Cameron seemed a little better, but we would not be avoiding admission as I had hoped, we needed to rule out other issues.

Thursday night into Friday was a nightmare - Cameron had a catheter to check for a UTI or Kidney infection, a Shunt Tap (where they stick the lovely needed in his head) and then he spiked a fever and threw up over all of us. Around 2am the Resident shared his White Blood Cell count was high at 20,000. So we knew there was some sort of infection but we had to find the source, he was convinced the urine would come back positive. It did not. The initial gram stain on the CSF (shunt tap) was negative – all good things, but sometimes you’d really like to find the source so that we can get Cameron medicine and back on track. But I’ve learned nothing is ever text book or easy with Cameron.

Ultimately we never found the source. We were inpatient Thursday - Saturday and never found the cause. The following Tuesday all final cultures were in and nothing had grown in the CSF. Relief.

The only good to come out of the fever and high WBC; we all feel confident this was not a CVS episode. Relief again.

In the midst of this mayhem comes the WTF. In broad daylight on Friday our house was robbed. Maybe you are saying “WTF” out loud right now too? TVs, Computer, Cameras, all the jewelry my mother has given me over the years GONE.

(Back story)…
Friday around 4pm we were moved to isolation (given concern of infection) Matt received a call from the neighbor checking on Miller. I didn’t need to be on the phone to know within seconds there was a problem, and when my fears were confirmed I went screaming and crying down the halls of 3 West falling into the arms of the charge nurse, thank you Erin for holding me.

Really how much can one family take?

2010, I despise you and all you brought us. There will be no Christmas cards this year, there are no photos – all gone with my computer (as is all of Cameron’s history, medical logs, insurance logs etc.)

Really, I’m going to be a complete scrooge and say 2010 was not a blessed year for us. We’ve been let down, beat down and are now run down to the very core.

I have no energy left to do anything more beyond making Christmas special for our two little boys.

To those who surrounded our family with love and support thank you, we would not have made it without you. The meals, the cards, the coffees, the love to make us not feel alone, we are blessed by some pretty amazing people. You know who you are, and together we will make 2011 worth celebrating.

Chance

What are the chances you will have a child?

What are the chances you will have a healthy child?

When I was young I never thought about these questions much, I just assumed I would have a child one day and it never even crossed my mind that “health” of said child would ever be a factor.

Growing up you’re not aware of what lies around the corner; the joys, the sorrows, the pain, the successes and the failures. Life is an open book when you are young, it’s full of dreams, with very little fear.

After learning having a child would prove to be difficult for us, I was sad, disappointed, even mad. Then one day by chance we learned we were pregnant. Never during those 27 weeks prior to May 3, 2006 did I ever think I would have a child who would be sick before he even entered this world. By chance on May 5th we learned of the many challenges Cameron, and us, would face as a new family.

And 2 years later Connor joined us by chance, not planned.

I bring all of this up because I truly believe the path we are on is by chance, it could have just as easily been you instead of me. I have grown, changed and learned so much on this path. And I have cried many tears and felt the weight of the world on my shoulders for really too long, but I will keep going because my children need me, and I need them. We are better people having Cameron and Connor in our lives.

One hot day this summer we saw two specialists at the Rehabilitation Institute of Chicago, as I looked around the waiting room I thought how all of us are here by chance and how so many other families were outside enjoying a beautiful sunny day in Chicago, at the beach, the pool, maybe getting an ice cream cone.

And there, in the waiting room I counted at least 15 different children under the age of 10, each one with orthotics on their feet, 75% of them in a wheelchair, all of us waiting at least an hour to see the same two doctors. And my little boy was squealing in delight playing with another little boy in a toy school bus.

Later he tires of waiting and asks when they will call our name. But he’s not upset that he’s stuck inside, he’s just tired of waiting.

Was I upset? No. I was counting my lucky stars that my child could walk, he could talk, and he was happy.

Cameron’s struggles are not over, he will fight the rest of his life. One thing not by chance; our will to give both our children the best chance to succeed in life.

Mile One of 6 Complete!

It's just over one month since our last hospitalization and I dare say it out loud, so I'll whisper it, if that's even possible in the written word - Cameron has not had an episode since his brain surgery.

We are so grateful for this change. It's only been 30 days but it's huge in what have been some of the most troubling 5 months of our lives.

We sleep a little easier, we exhale, we laugh, we make plans and we celebrate every good moment we get.
So far…

Yes, this is all with some hesitation, as Cameron's neurosurgeon is not yet ready to claim victory over CVS, and call "IT" (aka the last 5 months of hell) all due to the shunt and slit ventricles.

Dr. Bowman wants 6-9 months out before really taking a deep breath and never uttering CVS again, unless of course you are talking about your neighborhood drug store. Once we get to 6 months we’ll consider stopping his daily medicine.

So this is only Mile One. But every mile counts.

Last week Cameron had an MRI and his ventricles remain stable from 9/10, which is good. Sometimes I forget as he grows older and is more aware of his surroundings; he might become fearful of these tests. The MRI tech was so kind and made sure he felt comfortable. If you've never had an MRI it's not for the faint of heart, the "tunnel" you enter is what I’d imagine being stuck in a coffin might be like, sorry I can’t come up with a better analogy, I don’t mean to be grim. The tech ceremoniously hands me two sets of little Styrofoam like green ear plugs and as if we are suiting up for space Cameron and I clog up our ears. I always hope he can at least hear me say “I’m right here” but if he can’t he can always see me and feels me touching his legs as they slide him into the spaceship.

After the MRI we saw Dr. Bowman, and she adjusted his shunt up to 2.5, just a slight move from 2.0, all in an attempt to keep his ventricles “full” instead of potentially slipping back into the very very tiny area.
This is all a guessing game trying to figure out if the ventricles had anything to do with the vomiting episodes. Ironic; hydrocephalus is defined has extra fluid on the brain (larger than normal ventricles) and while Cameron once fit this mold perfectly, now we want them to remain large? I swear this science of the brain stuff is something I don’t think anyone truly understands.

So now we wait, any signs of shunt malfunction or CVS episode will send us to Children’s for imagining to see how the ventricles look. But for now we are happy, and at home….a few bumps in the road upon return to school after surgery, our daily struggles with therapy and home frustrations, but that's a story for another day. 

The Broken Cookie

Growing up one of my favorite memories is eating Pepperidge Farm Chocolate Chip cookies with my grandfather, Baba, and my brother. I’d dig into the bag, and without fail every time pull out a broken cookie. Baba would say “Rory, you always get the broken cookie” not in a voice of pity, but in way that comforted me. As this scene repeated itself over the years I loved this moment, I felt good about the broken cookie, because it was always my broken cookie and it was my moment with my Grandfather.

I’ve personally let my guard down to maybe 3 people in my life, where the words just start spilling out of my mouth, and the truths nobody really wants to hear are spoken, about how it feels to be Cameron’s mom. It’s not just the fears, the therapy/medical grind & the constant worrying.

The real guard comes down when the sadness is spoken, where the tears eventually start overflowing and the person listening isn’t sure what to do. The answer is just listen, as hard as it may be, as much as you want to try and fix it, and in turn, fix me. This situation, and me, as a result are broken.

I’m ok with being broken, that’s part of life.

Sometimes you just need to let it all out, let your guard down and say this is me, this is who I am & this is how much my heart hurts for my child. The silver lining in all of this is that Cameron’s heart is not broken, he is not sad, I will carry that for him as long as he’ll let me.

It’s not often you will hear me sharing these thoughts, but I think it’s a vital part of being a parent to a special needs & medically fragile child. We need to be able to speak the truths of this life with someone we trust.

Leaving the Comfort Zone

We've officially left this arena, we are back to the very uncomfortable zone, where we worry with each day, question every action and wonder about the future.

I could go on for days about what has transpired over the last month, and there are so many posts that should have been written, but life has gotten in the way of my "writing" time. If it's any indication of how intense things have been I didn't post a special message for either boy's birthday. I will be doing that eventually, but for now here's the situation.

History:
Cameron has been throwing up on the weekends only (yes, we find this as strange as you and all the doctors do), for the last 5 weeks. After a chest/ab x-ray didn't show anything last week we were instructed to bring him to the ER during the next episode so that they could better evaluate him.

Normally when he vomits we immediately worry about the VP Shunt for the Hydrocephlaus and a possible malfunction as this is one of the symptoms. But with each one of these episodes we never rushed to the ER because we've gotten comfortable waiting an watching at home. We'd talk regularly to our pediatrician and always had a game plan, let's give him a few more hours, and miraculously he'd recover.

So as last Friday approached we were all anxious, waiting for a vomiting episode to begin, prepared for our ER trip. It happened Saturday morning, so off I went with Cameron while Dad stayed back with Connor. Cameron grew progressively worse and by the time we arrived at Children's he showed them first hand upon greeting triage what the problem was.

The tests began, the consults from various departments began. Our peditrician, surgeon and others felt this was likely intermittent small bowel obstruction. And so we urged the ER team to start there and then work our way to the Shunt if we came up empty.
The following tests were done all before noon on Saturday:
- KUB X Ray
- CT Scan
- Belly/Kidney etc. Ultrasound
- Chest X Ray

And we had no answers, but a child getting sicker and sicker. Dr. Reynolds (our pediatric surgeon) admitted us to her service after watching poor Cameron lie in pain and then vomit practically on her in the halls of the ER. We seriously couldn't make it from one room to the next at times without throwing up. The good news it wasn't very productive, just dry heaves, but so painful to watch.

It was decided at this point to admit Cameron, at some point that afternoon we made it to room 588. Cameron was miserable, barely with us, only rising from his fetal position every 30 minutes to heave. While the Zofran (anti-nausea med) was keeping him from the physical act of vomiting/heaving, it was not stopping the wave of nausea. I pressed the various Dr's to please get a UGI and other tests.

It's amazing how much can't happen at a hosptial on the weekend unless you are truly dying. While I am glad Cameron did not fall into this category it made for a very stressful and heart wrenching few days.

We were to wait until Monday for an MRI of the intestines, abdomen etc. So we accepted this and Cameron returned to the Cameron we know and love by 9pm Saturday night, just in time for bed. Sunday was all about keeping Cameron happy and busy as he could not eat all day in prep for the MRI and he hadn't eaten since Friday!

Lucky for him, they cleared him to have a meal at some point to fill his belly, he ordered:
Chesseburgerfriespeanutbutterjelly - yes, just like that, as if it was one item on the menu. He enhaled it all according to Dad (I had to leave to take a shower!) for the sake of all involved.

Monday morning rolls around and we are tired of this entire process, the no eating, the sharing of rooms, the keeping a 4 year old happy in a box etc.

This kind hearted GI Fellow arrives and tells me there will be no MRI this morning, and they want to do a UGI. I was not happy and made it clear, in a nice way, he understood and I called the necessary people to get Dr. Reynolds (who also happens to be Chief of surgery) to see me and explain what the hell was going on b/c I could have gone home with him yesterday and done a UGI and Endoscopy all outpatient.

Theproblem with the new "state of the art MRI" because how can you get a 4 year old to drink the contrast and then intubate him under general anethesia, the risk for aspiration is too high - or this is what they told me. Makes sense.

Reynolds got right on the phone and begged the various teams to get us on the schedule for a UGI that day and Endscopy for Tuesday.

UGI was torture, Cameron did his best to drink the barium, but ultimately we ended up giving him an NG tube to get it down (tube down the nose to belly). He HATED this, but it worked.

Endoscopy was Tuesday, he received general anethesia, it was a very quick procedure.

All of the tests showed NOTHING, and so we are left with a looming diagnosis of Cyclical Vomiting Syndrome. This is only diagnosed by process of elimination.
Which we have pretty much done.

One test remains, a Metabolic panel on his blood. So the next episode of vomiting we are to take him back to the ER to get blood draw and they will then help us get him out of the episode with Zofran and IV fluids.

Cyclical Vomiting Syndrome is an unfortunate diagnosis for anyone, speficifcally for Cameron given the VP Shunt. As they share so many of the same symptoms of a problem. (Vomiting, Head Pain, Lethargy)

I am going to do another post in the future about CVS, but for now I wanted to get the update out to everyone.

There is much more to say, emotions and fears to cope with, and new protocols to be learned.

If you want to learn more about CVS - here are two good links:


http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/index.htm

http://www.cvsaonline.org/ -
if you want to get really in depth on one Dr's treatment guidelines read this: http://www.cvsaonline.org/pdfs/2008%20Empiric%20Guidelines%202045-3.pdf

Thank you to all for your care, support and concern. It's been a very rough time.
xo