Wednesday, June 10, 2009: Update
So, I haven’t updated in a while, and a lot has gone on…
We did a PET scan on Wednesday the 27th and the results were inconclusive because he was moving around too much. Two days later, he went into surgery so they could insert a port in his chest as an access point for IV’s. That day they also took a bone marrow sample, which came back clear. He recovered so quickly from that surgery that he was doing front flips to our frightened gasps on the trampoline later that day. The radiation schedule got pushed back 2 more weeks, and this past Friday we met with the doctor that’ll be in charge of his radiation. He tried to prep us for the next few weeks, and discuss the tentative schedule, and then said things like “nothing is guaranteed” and “if he survives this” to rapidly falling tears that we’d been trying to hold back, because Ian hates it when we cry.
Monday, we had the radiation simulation. One of the phrases we’ve all gotten used to hearing is: “I can’t even imagine.” Well, my guess is that many people don’t want to imagine, but if you want a glimpse to give you an idea… this is a dose of what we’ve been through, and a sample of what we’re in for… It all starts when he wakes up in the morning and we have to figure out how to stop him from eating and drinking anything, which is nearly impossible. Can you imagine denying a hungry and thirsty 4-year-old? Then we try to get him dressed, and ready to go. “Where are we going?” he’ll ask, and we’ll avoid using the “h” and “d” (hospital and doctor) words as long as possible. But eventually it slips out, and he starts to cry, and screams and yells “I don’t want them to poke me” and “tell them I’m better” or “I’m not going” and tries to lock himself in his room.
We force him into clothes and socks and shoes and he whimpers helplessly the entire drive, yelling “I don’t want to go! I want to go home!” By the time we even get to the hospital, it’s already been at least an hour of crying… from everyone. When we get there we try to play games, and keep his mind occupied during the long registration process, and it’s long every time, no matter what we do, there’s always a long waiting period, and nothing… NOTHING ever starts on time. I wish there was a VIP expedited way to do all this, but there’s not. He gets restless, screams “I just want to go home” 200 times and tries to escape before a doctor sees us.
No matter what we do it’s a battle. He won’t change into hospital garments; he won’t take medicine; he’ll kick and hit us and the doctors when we try to touch him, which will result in a brutal holding down until they access the port, administer the medicine, etc. Then they give him anesthesia, and every time, it physically hurts to watch him go from fighting to completely limp. We relocate to a waiting area while they run the procedure. It’s usually only about a 20 minute process, and then he goes into the recovery room for at least another hour. Most times he’ll wake up naturally, but this last time they had to administer a drug to stimulate him again… either way he wakes up irritated and aggressive, pulling on anything attached to his body, and screams and cries “I just want to go home” 200 more times before we can check out.
I have no idea if it’ll get easier, if he’ll fight it like he did every day, or if he’ll get accustomed to it… I don’t know which one is better, because I can’t see him getting accustomed without becoming really sad, and I’d rather have him fight everyday than be depressed at 4. But that will be the schedule of our days for the next 6 weeks, Monday through Friday, starting next Monday.
I took this last weekend to go back up to Steamboat, and it was so good for my soul. Steamboat in my mind right now encompasses everything that was good in life: amazing friends, an active lifestyle, cheap happy hours, incredible dance parties, doing work that I loved, and now there’s an intense nostalgia for life before brain tumors that I associate with that place, and I know life doesn’t ever get to go back to that.
My weekend was bittersweet, lots of laughter, lots of tears, lots of realizations, including a solid knowing that I don’t belong there, and that it isn’t home anymore… maybe it will be again one day, but not now. Part of the weekend I felt guilty because I can get to get away now and then, but my Mom doesn’t. I wish I could lift some of her burden, but I can’t… I wish I knew how to make this easier; I wish I wasn’t lazy and emotionally unstable; I wish I knew what to do and what to say all the time.
Anyway, it was amazing to be surrounded by people who haven’t ever met Ian and care so much. People that listened and cried with me, people who are rallying others in town to help us out, people who use their time to think about ways to make our lives easier. I got a letter from one of our girls in Uganda, Mary, she’s about 13, and she used to not have a home, or food, or go to school. She wrote me in perfect English: “The Mercy Childcare Kids (all the kid’s that I’ve worked with in Africa) have not left to pray for our beloved brother everyday during prayer time… for him and you… Hurry up home please, please, please sweetheart Nicole, hurry up home… Say hi to our sweet brother, tell him we love him so much and we hope to see him in Uganda one day.” And that’s just one… we’ve received countless letters, packages, phone calls, meals, Nintendo DS games, cool pajamas, people giving up nights and weekends just to come play games and watch movies with us. I just can’t get over it.
There are times I selfishly want to run away, and never look back; times I don’t get out of bed until I absolutely have to. None of this is easy, and none of us can do anything about it. Last night, I got off the phone with my friend Amy in Steamboat who has been nothing but amazing through this whole thing, checking up on me every few days, and constantly talking to people who want to help us out. I tried to thank her, to let her know to thank everyone else who’s been so kind, but my voice cracked, and I couldn’t get out the words. We hung up, and I sat crying out on my front steps watching the sun go down. And as I sobbed it wasn’t out of sadness, it was out of gratitude. It was a release so that my heart wouldn’t burst from the beauty… Because from New York to California, England to New Zealand, Egypt to South Africa there are people thinking of us, praying for us, and letting us know that we’re not alone, and that they care. So there is no quitting. There is no running away. There is no feeling sorry for myself because there’s just too much damn beauty. Thanks for being a part of it.
Nicole and family
Tuesday, June 23, 2009: Another Prayer Request
These last few weeks have been difficult, to say the least. I’ve been finding myself staring at the people and things in my new life—my scarred and bruised son that has a bumpy, foreign object in his chest; the IV coming out of that port; the milky drug that puts Ian to sleep; the Nintendo system donated to the CHOA (Childhood Hematology Oncology Associates) office to distract Ian (and other children like him) while he is being pumped with drugs; the doctors and nurses who I know more about already than some of my friends; the CAT scan machine; the radiation room where he is left alone, unconscious, because no one wants to experience the toxicity Ian gets as his treatments—and I still can’t believe how things have changed.
Before April 28, 2009, my biggest concern for Ian was whether we were going to encourage him to play football or baseball.
Our shock has subsided, only to be replaced by a subconscious denial: How can this be happening? My question rings constantly in my head, even while I soothe Ian with the mantra we’ve created to help him get in the car everyday:
“You’re a super hero buddy” How can this be happening?
“You’re fighting cancer cells” How can this be happening?
“I know you’re scared, that’s what makes you brave” How can this be happening?
There are moments when I can almost forget that he is battling for his life.
Yesterday, we went to the park and he jumped up from a bar to grab hold of the monkey bars. He barely got hold with one hand, adjusted his grip, and then swung his other arm up to get positioned correctly for his movement across the bars. A few boys older than he watched in awe as he did something they could not yet do. For those few seconds I was back to a time when I envisioned him scoring the touchdown or hitting the grand slam.
That image was shattered when a concerned mom helped Ian down from the bars by putting her hands around his chest. Her eyes looked at me with confusion when she felt the port in Ian’s chest, and Ian screamed out in pain. She stumbled over her apology. All I could say was, “That’s ok. You didn’t know.” And then I opened my arms to comfort Ian.
Before we started treatments, the radiologist actually said Ian’s tumor is a one-in-a-hundred-million occurrence—once in a lifetime for the doctors. Over the past 17 years, my husband has promised to get me a license plate that said “The 1%” on it because whenever I had any kind of medical procedure done, the doctor would give us the 1% consequences of the procedure and told me not to worry. Sure enough, whatever it was—bleeding out, infections–it would happen to me. Now, it’s my son’s turn, but he’s the .00000001%.
Yesterday, the nurse was asking if we saw any of the side effects that are common with the drugs he’s being injected with. Does he have headaches, vomiting, muscle and joint pain? Any hair loss yet? Is he still able to jump and walk up stairs? Tears filled my eyes. Seriously? He won’t be able to jump anymore? Doesn’t she know that jumping is what makes Ian, Ian? That was just too much to think about.
As those thoughts ruminated in my mind, they collided with the rarity of his cancer. If Ian can be that one in a hundred million that gets this cancer, then God, please let him be that rare child that will not experience any of those side-effects.
Please, please, please pray that God will protect him from all of it! From the headaches, the vomiting, the muscle and joint pain…Ian needs to jump and soar through the air. He climbs like Spider-man and runs like the wind. His joy permeates the air when he does flips on the trampoline. If my strong healthy boy has to have cancer, if he has to fast every morning before he receives the anesthesia, if he has to get poked and cut open, if he has to be put to sleep and then wake up deliriously kicking and head butting me, then please allow him to jump and run and be healthy the rest of the day!
I thank you for your continued prayers and ask that you add this request to your prayers.
Love and blessings,
Pauline and family
Thursday, July 30, 2009: Update, Safety, and Harry Potter
Well, it’s been about 6 weeks since I last updated… and it’s due time… sorry it’s going to be another long one, but it just helps me out to be able communicate how life is feeling…
Ian made it through 6 weeks of radiation with flying colors… he got a bit more accustomed to it after the first week, and would come home every day after treatment and tell me how brave he was. After week 2 the doctors were asking us if he was still running and jumping, and we responded with shocked answers of “he’s still doing flips on the trampoline” they nodded and told us to prepare for him to start losing more and more energy, and various other things… and that never happened! He lost a strip of hair around his head, and the last week of radiation brought about 2 blood transfusions and the worst of his lack of energy, but other than that he was unbelievably and miraculously healthy.
It’s been an interesting transition, for everyone. My Mom and I were talking about how the whole thing has leveled off into a bearable type of devastation. The initial shock has worn off and survival mode has just become our lives, and we can do nothing else but deal. Family dynamics continue to change, and we find ourselves learning new definitions of love and grace every day. Thanks to everyone that’s been helping us out in whatever ways they can to take as much stress and pressure off as possible. You’ve been more of a blessing than you know.
So to preface “Nicole’s view on life” part of the update, I need to let you know that I kind of have an obsession with one-liners. Everyone knows that I don’t have the capability of telling short stories or know how to get to a point quickly… so when someone floors me with a sentence, it truly amazes me. My favorite music, books, and movies usually make my top 5 because of the epic one-liners they possess. Well, I also have some friends that are incredible with one-liners, and it just makes me really jealous… anyway here’s the story.
I was with my friend Ryan. We were sitting on his deck having one of our many, but scattered, intentional conversations. This particular night was cloudy, and it definitely wasn’t raining, but when the wind would blow we could feel the mist that saturated the air. The clouds were thick and hung low, covering the moon. The stars captured us in a hazy lilac glow. We dove right in, talking about our ambivalence toward life and everything about it… our crazy self-diagnosed, bipolar symptoms… our fears of being alone… He recounted a story of an insanely busy time in his life. When things finally settled, the silence drove him crazy. Not doing anything with anyone for an hour became frightening… not receiving texts or phone calls was scary. “It was like…” he pauses, trying to peer through the clouds, searching for the words, “the quiet just didn’t seem as safe.” I had to pause him mid-story and comment on how particularly moving his phrasing was… and it’s this one-liner that I’ve been thinking about ever since… and all the things that just don’t seem as safe anymore…
. . . things like being an adult, things like relationships or lack thereof, things like parents, friends, teachers, bosses, churches. . . the list is endless… and the safety that I distinctly felt in other phases of life doesn’t exist anymore… the world is dark and dangerous, and an eerie quiet has set in that I don’t want to get used to. Everything can change in seconds, seconds that no one is guaranteed. I am completely helpless in this universe to do anything about what life throws at me. I guess I felt safer when I at least thought I could change things, but I’ve been tearfully awakened.
To further my exploration of safety, I’d like to discuss the latest Harry Potter movie. HP6 if you will… ok I confess, I love Harry Potter. (I also confess that I haven’t read the 6th and 7th books yet… Die hards, please don’t judge me.) I think JK Rowling is absolutely brilliant, and has created the best allegory for growing up and coming of age that my generation has seen. Each book/movie gets systematically darker, and the characters become more dynamic. Everyone makes mistakes, and every authority figure is challenged as to whether they are good or evil, and everyone has aspects of both. Everyone that is, except for Dumbledore. Dumbledore is the God figure, the unfailing good, the only trustworthy one, the symbol for wisdom, justice, and what is objectively right. (sic. This analysis was written before the conclusion of the series.)I’ve heard all the complaints of the 6th movie, and I completely understand, but I still think that it did a fabulous job of getting to the heart of Rowling’s allegory. Throughout the movie there are many pairings of safety with Dumbledore, and lines to the effect of “What bad can happen when Dumbledore is around?” and “As long as Dumbledore is here, we are safe.” And then (I really hope I’m not ruining this for anyone, but if you don’t know by now, you probably don’t care) Dumbledore dies. I cried, but it’s only because I cry really easily these days, and because, especially right now, I connected with what Rowling was trying to do: Depicting the death of safety. When everything you thought about God, your parents, your teachers, and life changes, when right and wrong become exceedingly gray, when the evil in this world and in people get that much closer to you, because there is no Dumbledore-buffer.
I think the death of my “Dumbledore” has been a slow, painful, and steady one… he was completely gone with no chance of revival the day I woke up to my Mom crying on my bed telling me that Ian had a brain tumor. You don’t get to come back from that one…
Anyway, at the end of the movie Harry and his friends stand in a tower at Hogwarts, still devastated and afraid in the wake of Dumbledore’s death. Harry tries to explain to his friends that he’s going out alone to do whatever it takes to finish what Dumbledore started. And his friends shake their heads, grab his arm and hand, and tell him that they’re with him, no matter where, no matter what. And that’s it. We mourn our loss, and we keep going… despite our fear and lack of a safety net. We hope 2 or 3 friends will stand behind us and come too… the only difference is that Harry’s quest is to kill Voldemort; our quest is just surviving the best we can.
Ian’s “Make a Wish” was granted, so we leave for Disney World on Friday. I can’t even imagine what it’s going to be like when we go to the new “Marvel” part of the park. He’s going to freak out (in a good way). We’re also going fishing around Nantucket thanks to my amazing brother Mike, and seeing tons of family and friends while we’re gone.
I didn’t mean this to sound like I’m depressed, or really cynical… both might actually be true, but that’s not the point… the point is the world only spins in one direction, and time only moves forward, and everything eventually ends… So, whether safety has died, or the universe is unchangeable, or everything sucks… there is still love, and there is still hope, and although fleeting, there is still life… and those are the only things that mean anything anyway… so there’s nothing left but to enjoy it. Have a blast these next few weeks, we will for sure!
Thursday, July 30, 2009: Thank you and an Update
First, I want to thank all the people who have helped us get through the most difficult thing we’ve ever gone through! It’s been three months since our world was completely changed. I honestly didn’t know how we were going to get through it. The meals, donations, gifts, and encouraging emails and cards have been a blessing in all of our lives. The Lia Sophia Jewelry fundraiser Sona and Karyn organized brought in over $800 for us. We received the check right after we received a bill for $750. Thank you so much to all of you that participated in that! Every time I wonder how we are going to get through the next obstacle, something like that happens. You have all participated in creating miracles in our lives. Thank you! Your love and compassion is healing my soul!
The six weeks of radiation therapy seemed like an eternity, but it is now over! Ian’s only side effects were his loss of hair and his blood counts were dangerously low his last week of therapy. He did receive platelets and red blood cell transfusions last week and is getting a drug this week that will stimulate his bone marrow to produce more white blood cells. The danger now is that he won’t be able to fight off any bacteria he comes in contact with until those white blood cells grow. The doctors are encouraged by how quickly his counts have improved on their own already. They have actually used words like “amazing” and “this rarely happens” to describe Ian’s recovery. It is what we have prayed and hoped for, but it still amazes me that our little four-year old is so strong and brave.
We are now getting ready for our Make a Wish trip to Disney World. We are leaving tomorrow and are so excited to help Ian put all the trauma of the past six weeks behind him. We will return right before school starts. I am returning to work, but will be taking many days off to be with Ian during chemotherapy. The plan is to get a PET scan in August and then start chemotherapy in September. I am hoping that Ian’s strength will prevail through this next treatment.
Love and blessings,
Pauline and family