The Diagnosis

Tuesday, April 28, 2009: Ian, One Day at a Time

So a lot of you know by now, but for those of you that don’t, I decided to write a little something so everyone who wants to be can remain in the loop…

Our world was rocked today… but let me back up a few days. This past Thursday my 4-year-old little brother Ian, was sick and vomiting… and we didn’t really think anything of it because of how many things are going around. He said he had a headache, he vomited, fell asleep, and when he woke up, he was fine. It was a little strange, but we didn’t think any more about it…until it happened again yesterday. My mom took him to the doctor’s office, and after checking him out the physician’s assistant thought it may be “a concussion, but probably not a tumor” so she scheduled him for a CAT scan this morning.

It’s interesting how things can be fine, and a second later life will never be the same. The CAT scan revealed a brain tumor on the left side of his brain. My Mom and sister left school as soon as they found out and came home and woke me up, quickly jolting me from a pleasant dream into a terrible reality. We all gathered upstairs and played hot wheels, trying not to cry every time he asked us why we were sad. After the consultation with the surgeon they made an appointment for surgery on Thursday morning. The tumor is about 4cm and has calcium deposits… I have no idea what any of that means… Regardless, they have to operate. We have to be at Memorial Hospital at 7:45am for an MRI, and the actual surgery is at 11:15am.

He’s not in any pain unless he gets a headache, and doesn’t really understand the severity of the situation. Neither do we, I guess. They won’t have results back until a few weeks after the surgery about whether the tumor is cancerous or not, so we’ll cross that bridge when we come to it. Right now it’s just really frightening facing this surgery where a million things can go wrong, and to stay hopeful when we just want to prepare ourselves for the worst. It’s scary thinking about all the what ifs… It’s hard watching him play and smile and laugh and not respond with crying, because all of a sudden tomorrow isn’t as sure as we thought it was. All of a sudden he’s not just a normal little boy anymore…

We were sitting at McDonald’s eating chicken nuggets after the consultation and we were asking him about the CAT scan. He got to hold his two favorite stuffed animals during the process, and Susan asked him, “Were you scared?” and he thought for a second and said “Yea, but I was brave.” And we know he’ll be brave through this whole process… like Spider-Man and Batman, his favorites. We all just need some more of that bravery, too.

All your encouraging words have meant so much, even though there’s not much to say… We’re keeping it together. My grandma flies in tonight. We’re getting ready for camping out at the hospital and bracing ourselves for whatever comes next… I’ve cancelled my flight to Africa until we figure out what’s going on…

If you pray, we’d appreciate your prayers the next few days, and especially Thursday… If you don’t, we appreciate your thoughts as well. Thanks for being in our lives…

Nicole and family

Thursday, April 30, 2009: Surgery

Hey everyone,
Here’s the latest… After about 3 and a half hours in surgery Ian made it, and is slowly but surely recuperating at the hospital. The surgeon said he was completely stable and strong, and there were no complications the whole time. We’re so thankful. Recovery will be slow and painful, but he’s coherent, he recognizes everyone, and he can still tell us all about Spider-Man and Batman, and the SpongeBob SquarePants operation game that he really wanted (and now has).

We hear that these first few days will be really rough: He’ll have a myriad of temperaments, and good minutes could turn into bad minutes in seconds… We’ve seen some of it already, mostly due to the fact that he really wants to go home. Who wouldn’t? But, he’s guaranteed at least two nights in Intensive Care. He has another MRI tomorrow morning at 9:30, and we won’t get the results back from the biopsy until Monday at the earliest, but more than likely two to three weeks… so all we can do is wait.

We’ll wait and hope and cry and pray and embrace every second we spend with him. We’ll deal with everything as it comes and keep going, because there’s nothing else we can do. We had many people at the hospital with us today, which meant more than I could ever write or express… it showed us that we’ll never walk this alone. We deeply appreciate all of you that showed up today, and thanks to everyone for all your thoughts, prayers, gifts, balloons, words of encouragement, texts, phone calls… we’ve seriously cried with thankfulness countless times at all the love and care we’ve received… I’ll do my best to keep everyone posted.

Love, love, love (it’s the only thing that matters),
Nicole and family

Saturday, May 2, 2009: Homecoming

Hey all,
Ian came home today! The last two nights were extremely difficult for him and really hard on my parents as well; they had very little rest and a lot of discomfort. All Ian’s been doing is screaming and crying that he wants to be home, and now he is! Thanks again to everyone who has been sending things to the hospital and to our house, and who came to the hospital yesterday to play and try to take his (and our) mind off of things for a while.

The results came back from yesterday’s MRI and showed that Dr. Grabb got the entire tumor. The doctors couldn’t express enough the importance and goodness of that news. The tumor was shipped to Johns Hopkins in Baltimore for further testing. We won’t get the preliminary results back until Tuesday and final results on Thursday or Friday, but Tuesday we’ll have another meeting with the doctors.

As of right now, his head is still pretty swollen and black blue, and his doses of medication are intense. The next few days will probably consist of Spider-Man marathons, lots of Hot Wheels, puzzles, and Piranha Panic… and trying to keep him from jumping off of things (which will be hard, because it’s his favorite thing to do). Recovery should last a few weeks, but we’re all here and ready to do whatever it takes to get him back to where he was.

We’ll let you know about results, and what comes next when we’re notified. Thanks for wanting to stay updated, and your continued love and support.

Nicole and Family

Tuesday, May 5, 2009: Results

Hey everyone,
We didn’t exactly get final results today, and what we did get, definitely isn’t what we wanted to hear… We got confirmation that the tumor was malignant. We’re all in a bit of a daze, and nothing is really making sense or feels right… it wasn’t supposed to happen this way. We were supposed to get the whole tumor. Ian would then recover. We’d go back to normal. A bump in the road, that’s it. But, that’s not what’s happening.

Further results have been pushed back again because the doctors at Johns Hopkins in Baltimore don’t know anything else yet. They said we’d probably get more information next week on Thursday or Friday.

So the next step is another MRI next Wednesday, this time on his spine; they also want to do a bone marrow biopsy. We know we’ll need to do some kind of radiation or chemo treatment in the future. And that’s all we know.

As I’m writing this, Mom, Dad, Baba, and Ian are out looking for a tent, so we can have camp-outs on our trampoline and in our living room.

I don’t know much of anything right now. . .

I do know that we’d all trade places with him if we could, and that life isn’t fair. . .

I know that we were never promised tomorrow, that love really does exist, and that there’s always always always hope. . .

I guess I don’t need to know much else.

We would appreciate your thoughts, prayers, and love more than ever before… thanks.

Nicole and Family

Wednesday, May 13, 2009: Spinal MRI

Friends and Family!

Just wanted to write a quick note about where things are at today… Ian had a spinal MRI yesterday afternoon, and it came back completely clean and perfect! This is such great news; we’re ecstatic! They were also supposed to do a bone marrow biopsy, but decided to hold off until we get further results from Johns Hopkins. We’re still on schedule to get those results on Friday… so we’ll see what happens from there. That’s all I’ve got right now! Thanks for your thoughts and prayers… it means the world!

Nicole and Family
p.s. We just got our tent too… let the living room camp-outs begin 😉

Friday, May 22, 2009: News

Hey everyone,
Well, it’s been over three weeks since the surgery, and Ian is pretty much back to normal. His recovery has amazed everyone. We also finally got some results from Johns Hopkins.  I don’t like that I’m the one that has to notify everyone; I can’t imagine being a doctor or someone who bears bad news on a regular basis…

Basically, our oncologist Dr. Cook has never seen anything like this in all his years… and the doctors at Johns Hopkins (the ones that examine every tumor ever) said they’ve only seen it a few times, but only in adults. They’ve diagnosed it as “primary adenocarcinoma of the brain” and that it’s one in a hundred million.

So there is no protocol; there is no standard; there are no stages; there are no predicted outcomes.

They originally wanted to stay away from intense treatments as long as possible because the short term and long term side effects are drastic at his age. However, we are now aware that the tumor is very aggressive, and we need both radiation and chemo.

Here’s our schedule as of right now:

On Wednesday, he’ll have a PET scan to search for tumors elsewhere in the body.

On Friday, the doctors will insert a port to make any type of IV issues easier. They’ll also do a bone marrow biopsy.

On Monday June 1, radiation will start. He will have this treatment every day, Monday-Friday, for 6 weeks.

He’ll have a break for a few weeks, and begin chemotherapy the third week of August. The plan is that he’ll be done with all treatments by March.

And then no one knows…

We’re in a daze, to the say the least. There are many tears at unexpected times. These last few weeks have felt extremely eerie: Everything was feeling back to normal; there were small moments that I could pretend like it was all going to be ok… But, it’s like we’re in the eye of a very massive storm, and we just found out that the worst is yet to come.

It’s unbelievable to think that the surgery was the easy part.

Well we have this week of playing, parks, and bike rides–then the treatments start. We’re in for a battle, and ready or not, we’re going to fight. Thanks for your continued thoughts and prayers, and for standing by us.

Please, keep it coming…

Still in shock,
Nicole and Family

Tuesday, May 26, 2009: Pauline’s Prayer Requests

One of the hardest things about this entire situation is that it is my job as a mom to protect my children—but I can’t protect Ian from any of this. I can’t stop the pain he’s going to go through soon. It’s so horrible; I can’t even describe how helpless I feel.

The only things I can do are pray and think positive thoughts. Sometimes it’s so hard to do either one of those, but it helps me to know that we have people doing it for us.

Please continue to pray and envision Ian coming through this stronger than ever.
Pray that the doctors will find the right treatment.
Pray that Dave and I will stay strong for Ian and for each other.
Pray that we will know what to say to Ian to help him get through this. The last time we went to the hospital for his MRI he resigned himself to the hopelessness of fighting, and shed quiet tears. It is one of the most painful memories I have so far, watching my four-year-old son fall into a state of depression.
Pray that my girls stay strong. They are amazing already, but I worry that their needs will get lost in the immediacy of Ian’s needs.
Pray that all the people who have come to our aid are blessed with the greatest of blessings. I am overwhelmed with the outpouring of love and meeting of needs we’ve received from Ana, Sona and Paul, Rhonda, Karyn, Meredith and Joel, Susan, Christine, Lauren, Brianna, Danielle, Alex, Justin, Bill and Mary, Jim, Vele, Jerry and Lisa, and Greg. How can I ever repay any of them? I pray that God will bless them immensely.

That’s all I have right now. I will update as needs arise. Please help me by adding to the prayer list the things I’m not thinking of now.
Thank you for your love, support, and prayers.
Pauline