Yesterday was an AMAZING day. Since Trey was diagnosed, we’ve participated in many events for the BC Children’s Hospital Foundation: Miracle Weekends, radio and television interviews, the Festival of Lights, and more. So, to thank us, the Foundation invited us to an event hosted by Telus at the Vancouver International Airport, which happened yesterday. When we arrived, a number of Telus employees greeted us and showed us around. There was home made apple cider, hot chocolate, marshmallows, rice crispy squares, gingerbread men and angels, jello, and toys to play with. We were also told that, in a few minutes, Santa would be arriving with Mrs. Claus in Telus’ private jet. The women from the Foundation we’ve gotten to know over the years, as well as three other families who have spent a lot of time at Children’s and taken part in the Foundation’s fundraising events, were also there.
A few minutes later, the jet arrived, with Santa and Mrs. Claus on board. My kids’ eyes were popping out of their heads, and I had tears in my eyes, as they watched Santa get off the plane. It was so sweet. Santa and Mrs. Claus came into the hanger and talked with the kids, and soon after, Ry, Trey, Ave, Sadie and I were off to board the plane with Santa. We got to go on a 30 minute tour, into the US and around to the Gulf Islands, just off our coast. Each seat had binoculars and a little Telus stuffed hippo on it. I think the kids enjoyed the flight, but I think they enjoyed Santa even more. They got to go on a plane ride with SANTA!
When we got back from the flight, Mrs. Claus took off with another family for their flight and we went into the hanger. Santa gave our kids their Christmas gifts: Trey got 2 stuffed animals, a toque and a baseball hat from the Vancouver Canucks and Vancouver Giants (our home hockey teams), as well as a Vancouver Giants sweatshirt. Avery got a digital camera and a remote control airplane. Sadie got tap shoes, a tutu and tights (which she put ON TOP of the clothes she was already wearing). On top of that, the kids got stockings filled with notepads, writing utensils, stamps, toys, and more. It was unreal. Christmas came early. They got the presents they asked Santa for, in person. AND, they got to hang out with Santa and Mrs. Claus and ask them as many questions as they wanted. Mrs. Claus even brought pictures of the reindeer to show the kids. They were so amazed and wonderous. After the kids mellowed a bit, we were brought a gingerbread house for the kids to decorate, and then they fed us lunch and we were able to get to know some of the other families who have led lives like ours. It was such a neat morning.
Afterwards, Trey just kept telling everyone that he got to meet the ‘real’ (we’ve told him that sometimes Santa sends out ‘helpers’ to go to malls and such places, to ‘pretend’ to be Santa, because Santa can’t be in more than one place at one time, and plus, Santa has to be up at the North Pole getting ready for Christmas Eve) Santa.
Here’s a video from Global TV:
[flv width=”320″ height=”240″]http://www.treypurcell.com/video/telusSantaFlight.f4v[/flv]
PS Heartbreak
Please check out our video on You Tube “PS Heartbreak” that we pledged our services to help raise awareness for MPS. I am also working with Kirsten Harkins to put together a NSWC challenge hockey game of H4 kids versus moms to also help raise funds and awareness of MPS. We might need equipment for moms to borrow and also looking for pledges to raise funds.
email: mcmcamera@yahoo.com
MPS II Research Grant – Request for Applications
This is the fund Ry and I began after Trey was diagnosed and we found out that NO ONE in Canada was raising money for MPS II Research. Our first year we funded half a $40,000 grant. The next years we funded $40,000 grants, and for the past 2 years we’ve been able to fund $50,000 grants. Thank you for helping us grow!
Now we need to fund some brilliant research. Please pass this info on to anyone who might be interested.
To download the application form, please click on the link: http://www.mpssociety.ca/page/announcements/ezlist_item_90799ad8-913e-479a-b571-b2652540ed07.aspx_90799ad8-913e-479a-b571-b2652540ed07.aspx?_s=http%3a%2f%2fwww.mpssociety.ca%2fdefault.aspx
Here we go again… UNC
Shanti, Shanti, Shanti
I knew I was unable to find peace, and knew that was my goal, but just could not do it. Personally, I am still not sure how to find peace given the situation us parents, who have kids with an unknown mutation of Hunter Syndrome, are faced with. The diagnosis is unknown, but we do know that our kids will take one of 2 paths. If any of you who have gone through this unknown period and have been able to find peace, please let me know. It will help all the future parents whose kids and families are faced with this.
Where have I been for the past couple monthes? After my last post was a longer than usual road back for me. My dad told me that my every 6 month break down after a trip to UNC is predictable, and it is. However, this one was slightly different. I spent over 4 years, holding onto, praying, hoping, believing, whatever you want to call it, that Trey’s brain would be okay. Huge HUGE emotion holding onto that. And then in August, UNC told us Trey is neither in the severe or mild category. What? Well, I’m still not sure what that means. Not even Dr. Muenzer is. And I’m not sure exactly what changed for me because Trey hasn’t changed, but I think it’s that I could now let go of what I was holding onto. Trey is not in the mild category. That statement took almost everything out of me.
And right now, I’m not sure why I’m okay. Maybe it’s because I’m not in NC. 😉 Nothing personal to NC or the people in NC we see… we actually really like them! It’s just that UNC brings an extreme amount of stress. We still don’t know Trey’s path. But, we DO know that he doesn’t fit into either category, which as frustrating as that might be, I’ve adjusted to. And I’ve found peace. And it feels good. I feel good.
I was inspired to write this blog because 3 kids I know with Hunter’s are going through GA’s today for different procedures. It’s strange, because right now I’m in ‘normal’ life mode. Driving kids to soccer, floor hockey, ice hockey, dance, kickboxing. Weeks are going by and NOTHING significantly eventful has gone on. Sure there are little bits of drama or excitement here and there, but compared to the drama of facing your child’s mortality and on the flip side, fighting for your child’s life, life has been NORMAL. And it’s been wonderful. And then today is a reminder of my ‘other’ life. I have friends who are not in ‘normal’ mode right now. They are scared and full of anxiety. And I want to acknowledge that. Because I know that even though we’re doing the same things our neighbors are right now, in the next monthes, that will change for us again.
I hope that the next time I am faced with fear and anxiety, that I can hold onto the peace I am finding. What I have come to discover, is that even though our less ‘different’ kids may let us think we have control, we do not. Not over their emotions or choices, not over their lives. And I am not a generally controlling person. I am in support of whoever my children grow up to be: gay, straight, kids, no kids, married or single, university or not… but I was (and I still think I should say ‘am’… it’s a work in progress) not okay with watching my child decline. I am not okay with watching my child die. We fight and hold onto beliefs and ideas, but when it comes down to it, all we have control over is ourselves and our happiness and our peace. Trey has shown me that. So right now I am working on finding my own groundedness, because that is what I do have control over.
Melissa, Jamie, Lisa and Rob, I’m thinking of you and your little guys today.
Despair
To give you an idea of where this is coming from, Dr. Muenzer told me that if this IT drug had already been proven safe and effective, he would treat Trey with it. He thinks it would benefit Trey. So now I’m entertaining the possibility that Trey does need and will at some point qualify for this trial. But if I get to this point in thinking, it means I’m also entertaining the possibility that Trey has progressive brain disease. Which means death, and a long, awful road there while you watch your child’s skills and development and personality dim like a light, and eventually go out, while at the same time you’re exhausted and frustrated because they don’t sleep and are very aggressive.
For 4.5 years, I’ve been holding onto hope that Trey’s brain will not be affected. But now, even though Trey’s cognitive tests are not all that different than last year’s, we are one year ahead. And apparently that puts Trey in the grey area. And if I recall from our visits to Dr. Escolar, kids who are in the grey area eventually decline.
One more note before I begin my post: I have been through this before, with Trey’s initial diagnosis and repeatedly since, with each round of cognitive tests, appointments, and surgeries, so I will get through this. Also, if you’re one of those cheery people who doesn’t like to wade into the deep end, you should probably stop here. Because this is what goes through my mind at night, when there are no distractions, when I’m having trouble holding onto hope. This is despair.
Aside from my other 2 children’s lives, I would give anything for Trey’s brain to be okay. To not have progressive brain disease. My life, Ryan’s life. But nothing I can do will change our reality. So how can I go on? The sad reality, after having lived it and watched others live it, is that I don’t have a choice. Unless I ended my own life, I’m going to keep living. And because I have 3 children I would die for, I won’t end my own life. So now I have to figure out how to live. Again. And instead of sleeping at night, that’s what I do. Try to figure out how to live. Because sometimes, I wish I wasn’t here. Or I wish Trey and I weren’t here. That would be easier. But then I love my kids too much to go beyond a fleeting thought of that.
So how to live. Yoga, yes. Think about me and figure out what I want to live for, yes. But what if what I want, all I want, is for my kid to live? Then what? How am I supposed to live while I watch my child die? That’s not even humane. Sounds like the worst type of prolonged torture that exists. And I’m having to entertain that reality as my life. So where do I go from there?
My friend whose son also has Hunter’s told me that she can remember the last time she was happy. It was last summer. She had just graduated from school, her son had just turned one, and she was skipping around her parents’ house. Her son was diagnosed that fall. She told me she doesn’t think she’ll ever skip again…
I want to figure out how to skip again, just so I can take her skipping with me. What kind of life is it if you never want to skip again?
You know who gets me through? Jen, Jamie, Lisa, Carolyn, Marie, Amy, Brooke, Robb. Because they know. They have faced it and know the fear and pain in my heart.
And I honestly don’t know how we get through. Actually I do. Because we don’t have a choice. So we hold onto each other and grasp for straws and try to figure out what the point of all this is. And when one of us is here, where I am now, we lift each other up and hold onto each other and don’t let go until we’ve figured out how to get up and keep living.
Thank you to the moms who are keeping me from drowning. And thank you to Ryan. Who has held me in the middle of the night when I have no idea how I’m going to go on.
No real answers
Well, we got Trey’s results. Although his score jumped 8 points from April’s tests, when Trey was sick, he did drop 3 points from his tests last July. So, he does not qualify for the trial, but his scores have dropped a bit, so we will be going back for another round of tests in another 6 or so monthes. Three points could mean nothing, but because we’re dealing with a progressive disease, it could mean something.
Dr. Muenzer spent some time talking with me. Basically, the vast majority of kids fit either into the severe category, which IF Trey fit into, he would be dropping approximately 10 IQ points per year by now, or the mild category, in which kids have physical symptoms, but absolutely no learning issues. Dr. Muenzer said that it does happen that kids fit into the ‘grey’ category with MPS II, which Trey seems to fit into because he doesn’t fit into either the mild or severe category, but it is rare, so rare that he couldn’t even comment on what kids who fit into the ‘grey’ category look like long term.
It is also entirely possible that Trey’s learning difficulties are unrelated to Hunter’s.
So the end to this journey is not over. We’ll go back in another 4-6 monthes. And I’m going to get back into yoga so that I don’t go completely crazy because I am very close to there right now. I think I’m going to have to figure out how to stop living on hold, because by the time we go back for our next round of tests, I will have been living the unknown for 5 years, and I’m really done with it.
On a positive note, we met a family in NC who was down there for the IT trial. Trey and Elijah (he’s the little guy with MPS II who’s getting the IT drug and is about 6 monthes younger than Trey) had an absolute blast together and Trey’s asked to play with him about 5 times since we left. Brooke, his mom is also great and it was really really nice to talk with her.
No news yet, just emotions
A friend sent me this, and especially given the news we are expecting today, it means even more:
‘I loved you the minute I knew I was pregnant. I loved you the minute you were born. Then I saw your face and fell in love some more. You were only a minute old but I knew I would die for you. When you choose to have a child, you make a conscious decision to allow your heart to walk around outside your body.’
Trey had his cognitive tests yesterday, as part of the screening study for the intrathecal trial going on at UNC to treat brain disease in Hunter Syndrome. With Hunter’s, either cognition is fine, or it’s not. However, the answer to this question, is not always clear upon diagnosis. We’ve been waiting over 4.5 years for final confirmation from the doctors.
Trey had one round of tests in the morning and one round in the afternoon.
For the morning tests, the tests they use to decide whether or not Trey will qualify for the IT trial (and the harder tests for Trey: fine motor, sitting down, more academic kind of stuff), Trey was brilliant. Dr. Stein commented repeatedly on his amazing concentration and attention. There was a few questions near the end that he could have gotten if he wasn’t an hour and a half into testing and had more focus (one he even concentrated on for about 15 seconds before you could see in his eyes he was done, and stopped 3/4 of the way to the answer), but there were also a few questions that he answered that I didn’t get, but Dr. Stein turned the page so quickly after Trey having got it right, I didn’t have a chance to figure out why that was the right answer!? So either he guessed or he’s smarter than me.
The afternoon tests weren’t awesome as Trey was bored and acting silly, but he did okay, and those tests aren’t used to include or exclude him in the trial. They are just used, from my understanding, to help give a better overall picture of development. They included all the gross motor and ‘fun’ stuff for Trey: running, jumping, skipping beading, cutting etc.
Anyways, I think the morning tests were as accurate a test for Trey as he could ever do. Which is what I was hoping for. Given that Trey bombed the last round of tests due to lack of sleep and having the flu, I have spent the last 4 monthes preparing for this round of tests. With his speech pathologist, his tutor, I made an appointment 6 weeks ago to have Trey’s ENT check his tubes to make sure he didn’t need surgery, and then another appointment again last Wednesday to make sure his tubes weren’t plugged, he didn’t have any infection, and to get a prescription for antibiotic ear drops, just in case Trey did get a cold while we’re here. Three weeks ago Trey was fitted for new ear moulds, just in case his were getting old or too small (they ring and given annoying feedback if this is the case). I planned with Trey’s speech path, who is AWESOME at keeping trey motivated and working even when he doesn’t want to, how to keep Trey going during hours of development tests. When Ave and Sadie got a cold a week and a half ago, I started pumping Trey full of a remedy I use to keep us healthy, oregano oil and vitamin C and kept this up until yesterday. We washed hands after touching anything. We didn’t go out for dinner and ate only healthy food for the past weeks. I wouldn’t let Trey watch TV for the past 4 monthes because I wanted him to be stimulated as much as possible.
When those morning tests were over, I sighed, repeatedly. I could finally relax. The tests were out of my hands and I had done all I could do. It was such a feeling of relief, I cannot even describe. All day, I sighed and felt soooooooooo much lighter. Phew. Over. We went to Five Guys for burgers (Trey’s favourite food), which, if you’re on the East Coast you should stop by. Ry’s fave burger joint has always been ‘In N Out’, but that title may have been overtaken by Five Guys. The burgers were the best I have EVER had. Then we split a banana split and went home and watched TV.
I spoke with my good friend Jen, who has now become my rock getting me through this, and I told her I feel like I’ve been training for the Olympics (because we’ve had this diagnosis for 4.5 years now and this is basically the final confirmation of whether or not Trey’s brain is affected by the Hunter’s). When my event ended yesterday, there was so much letting go. Now I’m just waiting for the results.
UNC trip coming up
For those of you who do check in here periodically to see how we’re doing and what’s going on, Ryan, Trey and I are leaving on Saturday, August 14 for North Carolina, for the screening portion of a the intrathecal Elaprase trial. Trey will have a physical, hearing and vision tests on Tuesday, August 17 and neurocognitive tests on Wednesday, August 18. We will find out results and return home on Thursday, August 19. Criteria for the trial has recently changed, so if you’re interested in details, please give me a shout: dcehak@telus.net.
Cardiology Check-up
After a long and exhausting and draining (and sick, for me) day, we found out that Trey’s EKG and echocardiogram from today are indistinguishable (doctors words) from March 2009’s tests. Well, nothing like GREAT news to put things in perspective. Not that life wasn’t in perspective before… a friend’s son was just excluded from the MPS II IT trials (in the trial, doctors inject the enzyme our kids are missing directly into the central nervous system/brain because the enzyme replacement therapy our kids are on right now doesn’t break the blood brain barrier, so can’t help the brain’s progression of disease). This little guy has a known severe mutation, so they know his brain is affected, and this trial is/was the only hope to save his brain. Now the parents are just expected to sit by and watch him deteriorate. To put it tactfully. It makes me sick to think about.
So, life was already in perspective. But, when you’re sick and have just sat for 5 hours for an infusion with 3 kids, and then sat two more hours for cardiology tests, and then you wait in a room with only a few books, for 50 minutes, waiting for the doctor to come give you your results, I got a bit… frustrated. However, this awesome news makes none of that matter. My kid has a progressive disease, that affects his heart, and the past 15 monthes has shown no progression of this organ. He has only trace mitral and aortic valve regurgitation. Fucking eh (not so tactful, but sometimes emotions, and resulting words, can’t be tamed :)).