I think there is one story that will forever be our favorite April Fool’s Day Story. Our daughter was diagnosed with a brain tumor the day after Thanksgiving. She was eight. She was immediately admitted to the hospital and not released until her 9th birthday, Christmas Eve. She went back in on New Year’s Eve, had a port for chemo installed over her heart and underwent her first chemo treatment as she watched fireworks from her perfectly placed hospital room. Fast forward a year and a half…
4-1-05 was the last day of chemo. She’d completely planned to go in and pull a joke with the nurses, pretending the access really hurt despite all the numbing cream they put on. Well, that backfired. It really, truly hurt. April Fool’s!
Well, after having our holidays hijacked for a year and a half, we have finally approached a normal life. It’s that bright light in front of us, right? LOL
Yeah, she’s not doing that again
Happy 6th Anniversary, my lovely little girl!
Jamie – finally done being sick and dropping everything until I felt better
A book of poems about life, love, loss and cancer written by 13 year old childhood cancer survivor Thalon Marie-Leigh Hansen has just been sent to print at Lulu.com. Thalon is donating the first, hardbound copy to the annual Candlelighters’ dinner party this year, on April 25th.
For anyone who does not know about Candlelighters, I’ve blogged about them before and they can be found in the Cancer category in my blog archives. They are an organization designed to aid families through as many of the trials and tribulations of dealing with childhood cancer as possible. They provide snack baskets at the clinic for the children to eat when they’re at the hospital all day. $300 provides a snack basket for a month.
They also provide $25 gas cards, an invaluable tool with today’s gas prices. When Thalon was in treatment, we drove everywhere five days a week. We live in the middle of town and we drove to all the extremes for the different therapies, pool, physical, occupational, chemo, speech, etc. Insurance required only 1 therapy a day so the five days a week is no exaggeration. Gas was a nightmare.
Candlelighters also supports the Ronald McDonald house and Family Room in the Children’s Hospital. They provide food to families suddenly moved in for a week or more. Laundry services. Beds to sleep in. Comfortable areas to sit and try to feel at home.
I can’t say enough how proud I am of my kid. She’s done such a great job. Put her heart and soul into these poems.
Last night was the dinner auction for the Inland Northwest Candlelighters. At these, they have table upon table of items that have been donated for the silent auction. Everything from gift baskets of candles or gardening items or wines or baby items. They had some beautiful antique silver sets and handmade blankets and quilts. My husband fell in love with the medeival gold and cobalt chess set. Absolutely gorgeous.
We got a complimentary photo that I’d scan in for here if it hadn’t somehow gone home with my mother in law.
So, when dinner started and they played a video of some of the kids and we did the candlelighting ceremony, honoring those children who’d gone through treatment for cancer, the families who’d stood by them, the doctors who helped them, and those who’ve already “grown their wings”, it was all I could do to drink my coffee and sip my wine without crying. It’s hard, but so necessary to be there for those moments.
When Craig and I had first arrived for the dinner, we were standing and visiting with one of the security guards. He’d had no idea what the organization was for. He could only assume something like Partylite or something. So I’ll state here what it is and who it is for.
We exist for every child who is diagnosed with cancer. We are an organization made up of survivors, parents, friends, and family members who’ve all had their life impacted by childhood cancer. That means babies diagnosed from birth to teenagers diagnosed at a time when their only worry should be what college to apply to.
When we first were admitted to the hospital, Craig, our daughter and I were there, every day, every night, every minute. We had friends who stopped by that first weekend, then once in a great long while over the next two years. We had friends who checked on us once a month. We had lots of people asking, “Is there anything you need? What can I help with?” Honestly, we had no idea. We didn’t know what we would face or what decisions we’d have to make. By the time the first few weeks were over, we’d closed in. Us three and the grandparents. A few other in-laws came by periodically throughout, but for the most part it was just us.
No one knew what to do for us. We didn’t know what to tell them. All we knew is that once the adrenaline rush of an immediate emergency wore off, other people could move on with their lives, but we were just starting. There’s no way an adrenaline rush will last for a year and a half for everyone we knew. But it did for us. A constant, never-ending, never-easing, exhausting state of emergency.
Candlelighters’ members understand that. They understand a lot. But for people who are more practical, there are other, more concrete things they help with.
1. Gas cards. We faced our first 2 years with an appointment every day of the week, all day on Fridays. We traveled from one end of Spokane to the other. Pool therapy up north, Physical Therapy two days a week in the Valley, Occupational Therapy, Speech Therapy, all these were everywhere and we were doing it just as gas prices were hitting the roof. $80 a week in gas adds up quick. We were thankful every time we were handed a card. Last night, we learned Candlelighters gives out $1000 a month in gas cards, distributed among the hundreds of families at the Children’s Hospital who are facing childhood cancer. And so they took donations for $25 gas cards, totalling nearly $6000.
2. Groceries. Our first welcome package had a $10 gift certificate to a grocery store. It helped. We were living in our daughter’s hospital room. Thankfully the new rooms had a small refrigerater we could fill with drinks and snacks. Also, Candlelighters helps stock 2 Ronald McDonald Family rooms that have a small kitchen, sitting area, cabinets for dry food and a large fridge. If it weren’t for these rooms and all the donations to Ronald McDonald, life at the hospital would have been so much harder. And when we went home, we learned the difference in shopping needs. More and more cleaning supplies, fresh foods until blood count falls too low, then no fresh foods. It’s an entirely different experience, an entirely different focus on needs.
3. Snack Baskets. Every month, Candlelighters provides a $300 basket full of snacks for the kids and their families who must spend entire days in the clinic doing chemo, getting a blood transfusion or other medicine and tests. These baskets have bags of popcorn, cookies, crackers, chocolate, chips or juice. I just have to say, when you watch a healthy 9 year old drop from 74 lbs to 60 lbs in two short, sleepless months and you’re told get calories in her any way you can or face needing a stomach tube, well, seeing that child open a bag of chips takes on a whole new meaning. Unfortunately, last night the money had run out by the time they’d come to the snack baskets. They raised enough money to provide 2. We are very grateful for that, please don’t mistake my meaning. But I know next time we go shopping, we’ll buy an extra can or two of soup and a case of popcorn to help out.
4. The Family Resource Room. Full of free books, 2 computers with a printer and internet access, this is a quiet place to meet and to learn. While dealing with this, we discovered there’s never an end to the learning.
5. A Poke Box. Remember, we are dealing with children who must face a needle in their arm or chest on a regular basis. Yes, they have numbing cream, but would you believe one of our insurances actually considers this to be OPTIONAL? As in heavy copay, if they covered it at all. And lets not go into the necessity of anti-nausea meds which are barely counted in some cases. We always numbed the poke area, but the children are still so afraid of the needles that coping skills become an art form. And one of the coping skills is out and out bribery. So, get this poke and you can pick a prize from the poke box. After a year and a half, she had so many little toys and prizes, but I have to say she earned every single one of them. Of course, for surgery days and big days like MRIs, we also bribed with trips to the bookstore, Chinese food, and we couldn’t have survived without the unlimited Blockbuster rentals. Not to mention the Disney Channel. For about 2 years, Craig’s mom was the poke box fairy. She took all her bargain hunting skills and kept it full for the little kids and another one for the older teens. She’s still heavily involved.
This is getting quite long and I have church in the morning, so I’ll stop here. But here are 5 ways Candlelighters helps families. By far, these are not all the ways or even the most important. But next time someone you know has a child with cancer and you want to do something to help, here are a few ideas. Gas Cards. Grocery Cards. Snack Baskets. Learning Resources. Poke Box Prizes. Or even just drop your change in the receptacle outside the drive-thru window at McDonald’s. Or save your pop tabs and take them to the Ronald McDonald rooms at the hospital. Or buy a seat at the next dinner auction.
So, this morning, I told Craig I thought I had a hangover. He started laughing at me! I don’t understand why. I had 2 glasses of wine!
First, really great news. I’d like to thank God for helping my daughter and our family yesterday as she had her 7th surgery in the last 39 months. I can’t fully count this year or the first year since she was diagnosed at the end of November, so I counted months. It’s been a long trip, watching her grow and change. She’s learned to accept responsibility and gather her own strength to get her through the most trying of times.
She was so calm yesterday!! I think that may be why I cried a little as she was wheeled away. She’d begun to cry for the first time all day. (Except for the rubber band incident. ) Usually we’re in calm-her-down mode and that keeps us tense and prepared to deal with tears. I don’t cry those days, working harder to keep her from crying. (Not because it denotes weakness, but because she can work herself into a panic that makes the whole day much more stressful on everyone than it really needs to be. Seriously, if you don’t have to, why go there?) Also, tears cause congestion and get the glands going and combining anesthesia–that’s just bad.
But, yesterday, she played and giggled and told us to leave her alone-she was reading. I owe a huge thank you to Michele Bardsley, author of I’m the Vampire, That’s Why. She kept her distracted and happy and laughing on an extremely stressful day. There’s really no bigger compliment to an author, I think.
THANK YOU, MICHELE!!!
We’re home now and she’s not in pain. The really good thing about brain surgery, once you’re inside the skin and skull, there are no pain receptors. Other than the air they blow in to push scar tissue and stuff away from the catheter so they can drain the cyst, she doesn’t feel pain. The air, however, gives her a horrible headache for quite a while.
Now it’s all good and we’re getting back to life as normal.
So, for the last few hours, I’ve been friending people from one My Space account to another. www.myspace.com/JamieLeighHansen will host all the news about my up and coming book and the other one will be for family. No need to make everyone cry because they can’t fly to Spokane for all the BBQs we’ll be having this summer. LOL
Thank you to everyone for being so patient and helpful.
And if you don’t have a My Space, you can still connect with me in three ways:
Newsletter: enter your email in the Monastary/Home Page and hit subscribe.
Now, I’m off to read Howling Moon. I love it. In the hospital, I finished Dangerous Games by Lora Leigh. Very distracting. LOL And HOT beyond the telling of it!!
I’m not an excessively superstitious person. I don’t walk under ladders because they’d likely fall on me. I love black cats and have two. They have a lot of white on them, but they were free, so hey. That works. But, in 2002, right before the end of the year, I read a comment that stuck with me. At first, it wasn’t a prediction or a superstition. It just seemed like good sense. A good way to set your mind for the new year, kind of like making New Year’s resolutions.
The comment was: How you spend the first day of the year is a sign of how the year will go.
It’s not a superstition yet, but it’s becoming something it would be ridiculous to ignore. You see, coming up to New Year’s Eve 2002, our brother was in the Coast Guard in Seattle. He’d been in Spokane with family for the holidays. On his way home, he realized he’d forgotten his cover. You know, the military hat, and he needed to report for duty with it. So, being a loyal brother and sis in law, Craig and I drove overnight from Spokane to Seattle to bring it to him. I thought it began 2003 with a road trip. Excessively awesome.
Instead, my husband missed work and we were in a state of emergency. So, Craig got sick, missed about 7 months of work and had surgery in July, resulting in a week in the hospital. A month later, he returned to work. As he was gone, I fell and broke my leg. I went from a walker to a wheelchair and spent a week in the hospital as we tried to figure out how I’d be able to function for 3 months with no balance due to FA and being unable to put any weight on my right leg. A few weeks later, as I was teaching my daughter how to crochet a chain stitch, her left arm began shaking. Within 3 months, we got an MRI with sedation, our daughter was diagnosed with a cancerous brain tumor and we spent a month in the hospital.
2003 in a state of emergency and months of missed work.
We rang in 2004 at the hospital with our nine year old in her new pink, silky pajamas looking out the window at the best view of the Spokane fireworks ever. From her arm trailed the tubes full of her first chemo treatment. Every Friday, all day long, and for several entire weeks, that was our 2004.
For 2005, the phrase rang in my head over and over. How you spend the first day of the year is a sign of how the year will go. We stayed home. We watched TV and we hibernated and I wrote. That year, I finished a second full version of Betrayed. Everything else is revisions. And I signed with the most amazing agent ever. We finished chemo and revised Betrayed and the year turned out very productive and fulfilling.
For 2006, I had to get ready for jury duty beginning Jan. 3. I spent one day in court, waiting, and a week making all the necessary phone calls to check in. The legal aspect of this last year, coupled with endless, relentless drama, did nothing short of suck. The rest was a pretty good year.
Now we are on the eve of 2007. 7 is my favorite number ever. I have a lot of high hopes for the year. We plan to spend the first day with friends. Tonight may be with family, or it may be resting at home. You can never quite guess what that will mean for the rest of the year. All I know is this:
Protect the first few days of the year with all you’ve got. No sickness, no emergency, no hospitals, no missed work. Whether it’s mentally motivating or a curse of some sort, I’m finding it a piece of advice that’s foolish to ignore.
How you spend the first day, or few days, of the year is a sign of how the year will go.
I hope you all have the greatest day possible with hours full of the things you most need in life.
Today was my daughter’s 4th MRI this year. Over the last 3 years, she’s had at least one every 3 months. So, she’s had a little more than 12 of them. Since her very first aborted attempt at one, when she was only 8, she’s been terrified of the machine. The sounds scared her. She’s needed to be sedated for every MRI since. However, since she is getting older and there is a risk, however minimal, with sedation (Which is why it can only be done within the presence of an anesthesiologist.) we’ve had to find a way to help her do it without. So we found a counselor to help her work through her fear, but it’s only been less than two months.
We went in today prepared to do another sedation. Instead, her doctors wanted to try Versed, anti-anxiety happy medicine, and have sedatives as a back-up. The nurse tricked her, making her think she’d given Versed, but she wanted to wait. See if she could do it on her own.
So, my dh and I watched our daughter walk into that hallway where the MRI room was. Usually she is wheeled. The door has always needed to be closed before. The sounds would send her into a panic. We’ve kept it open most of this year, but she’s always had to be knocked out in the hallway. It wasn’t even until this year that she was knocked out on the gurney that goes into the MRI room. It’s always been the bed before. But today…today she walked through the hallway and up to the open the door.
She froze on the line that separated the room from the hallway and stood there for the longest time. By herself. She’d already told my dh and I that she wanted us there today but not to say anything as she worked through her own fears of different things from getting an IV to going to the radiology holding room. We stood back and let her do it, watching her take deep breaths and build herself up.
Then she passed over the line, walked up to the gurney that slides up to the MRI, and sat on it. She was crying, but there was no arguing, no fighting, no last minute panic attacks. They hooked up her oxygen monitor, dried her eyes and got the heated blankets ready. She was stiff and crying as they laid her down and covered her up, but she did it. They rolled her into the machine with the door open so we could watch. It seems like such a tiny hole, but it swallowed half her body and she didn’t panic or scream.
They shut the door and the machine, that’s noisy even when it’s sitting, started making the horrible knocking sound. We waited, listening for a scream that never came. After a minute or two, we left for the waiting room. She did the entire 40 minute test with one nurse holding her hand and writing a poem on Thalon’s heated blanket. Later she copied it onto paper and I think we’ll frame it.
It won’t always go so well, but today my little girl conquered one of her biggest fears and came out smiling. That’s something worth sharing, so I’m doing so—with everyone.
We still have a few weeks to acquire the beautiful gold ribbon pins and pendants. Or a precious car magnet with the Candlelighter’s spokeschild on it. All proceeds go to research or helping families with the many different aspects of cancer. Whether you take this time to donate to the:
American Cancer Society to help with all the many things they do, like sponsoring an annual camp for cancer kids where they can have fun while safely monitored by doctors and nurses
or to the:
Candlelighters Childhood Cancer Foundation who helps so many families in all aspects, from befriending and lending a hand when your child is suddenly diagnosed, to helping with transportation issues. There are many local groups of Candlelighters. It’s not hard to find one near you so you can help the children in your community.
: your time and effort is much appreciated.
Have a good weekend.
We happened on this song by pure chance one day as we were driving my oldest daughter home. It turned out the only station on the radio that came through that day was a country station. Usually, we listen to Aternative and Classic Rock, but we occasionally enjoy country. God must’ve been paying attention.
In the midst of 1 1/2 years of chemo hell for our youngest daughter, we were driving along, totally unsuspecting of how hard we were about to sob. Both my husband and I. I don’t know if our oldest heard the song, but we were grateful the youngest wasn’t in the car.
We tried to forget it after that, but one of the lyrics stayed with me and every time I mentioned the song to someone, I didn’t know all of it, who sang it or anything. Well, tonight, I asked my dh to find the lyrics to Streets of Heaven. I should have warned him it was *that* song.
See, November 29, 2003, my husband and I took our daughter to the local hospital to find out why her left arm was shaking so terribly. We’d finally gotten an MRI scheduled where she could be sedated. The first time, we’d mistakenly thought she could handle the loud machine. Now we know better.
But on that winter day, the day after Thanksgiving, at 5 in the morning, we woke, dressed and made it to the hospital. My husband was thinking he’d be late to work, depending how long the test took. I was thinking about how it was the day after Thanksgiving–meaning the day we set up for Christmas and decorate our tree with 1800 lights so we could enjoy the way it glowed for an entire month, mellowing our mood, refreshing our spirits and preparing for the next year. Our Tree of Giving, where we love to pile presents to spoil everyone we know and love.
We were trying hard not to think of how her left arm was shaking, her fingers wouldn’t move well and her left leg was dragging. We were trying to ignore the worry that had built for 3 months as we waited weeks for doctors appts. and scheduled tests watching her shake and limp grow more pronounced and hearing doctors’ calming platitudes that weren’t making us feel better.
We tried not to think that morning, so we wouldn’t break from the strain we’d been under all year. We weren’t thinking about the fact Craig was sick for 6 months, until his surgery in July of 2003. Of the financial stress we’d endured as he missed work most of those months. Or of how I’d fallen and broken my ankle on the day he returned to work. Of how I’d become confined to a wheelchair for 3 months and had just gotten permission to put weight on my still-booted right ankle.
We soothed our eight-year-old baby, trying to help her ignore her hunger and thirst and be brave as the pediatric nurse put numbing cream on her arm. (And do you know medical insurances do not consider numbing cream a *necessary* ointment for children dealing with weekly, if not daily, pokes?)
But that day we didn’t know anything. It was all new and horrible and terrifying and soul wrenching. I saw my precious child with cream and a clear plastic seal on the inside of her elbow. She was afraid, no matter how we tried to distract her with toys, TV, stories, playing. She’s not stupid. She knew something was up.
Somehow, we got her through the installation of her first IV. Then the sedation. Watching her fall suddenly, eerily to sleep. Her tiny body limp as her dad lifted her from the gurney in the hallway (she’s still too terrified to stand in the hallway with the MRI door open, even if it’s not her day for a test) and carried her into the MRI room. There he laid her on the bed that goes into the MRI machine, and we watched as all the tubes and monitoring machines were attached to her sleeping body.
I couldn’t go in. Still can’t, not even to hold her toes as she sleeps. See, I’ve done several MRIs in my life, part of living with Friedreich’s Ataxia. I could’ve handled being in that room as long as I was needed. But my ankle had broken, in both bones, so severely, I’d had two plates and 8 screws installed to hold it together. With that much metal, I’d destroy me and the machine. So I watched from the doorway as my husband, who already hated hospitals so incredibly much, held her toes until the tubes and monitors were set.
Then we sat in the waiting room for 45 minutes. Me with my cross-stitch and him with a book, and the TV on some talk show we tried to ignore as he thought about work and schedules and trying to make up for 6 months and I tried to keep my hands busy and my head working on how I wanted the house decorated for Christmas. We’d already missed decorating for Halloween and Thanksgiving. The year had sucked enough. I wanted some holiday cheer.
The clock ticked slowly by. One of those clocks that shows the seconds going by until even so little as a second seemed an eternity. Finally they called us back, warned us the sedation med would cause her to wake up grumpy and said within 20 minutes or so, she’d be awake. So we stood by her bedside, Craig brushing her hair away from her face and me reaching from my wheelchair for the only thing I could grab, her toes.
Twenty minutes, then we could leave. We could take her home and set up for Christmas and Craig could work and then we’d enjoy our weekend. Maybe do some shopping and present wrapping. And maybe get an answer about her shaking that wasn’t too bad. Something easily cured. Please, God.
But it didn’t happen that way.
A minute, maybe two, after we’d been left to wait, some guy walked up, flipping pages on his clipboard and said, “So, I guess you heard. We found something.”
If you consider a tumor the size of an egg in the middle of the right side of my baby’s brain ‘something’.
We didn’t go home that day. Or that weekend. Or, actually, most of the next month. Instead, we were admitted as one of the first few families in the new Oncology ward of the brand spankin’ new Sacred Heart Children’s Hospital. Room 304.