Wednesday, June 30, 2010
Today's focus has been trying to control the nausea and bone pain. He hasn't had much appetite so I left well enough alone. His main source of nutrition today was a whole bag of buttery popcorn. William remarked excitedly, "Hey, mom, popcorn tastes good with chemo today!" We'll see about tomorrow.
Today I was grateful for William's diagnosis. Well, as grateful as I can be. His roommate also has a rare tumor cancer, but the name is something long and very foreign. He was diagnosed in April and today the doctors basically told the family that more tumors have appeared and they don't know what else to do as the course of treatment doesn't seem to be working. Through tears, the grandma told me the doctors had basically given up. The family is now seeking additional consultations with doctors in New York where the expert on their form of cancer is located. I also learned that he is their only child. It broke my heart to watch their hearts breaking too.
The ugly secret about childhood cancer is the lack of funding and research because medical companies make more money off cancers that affect a greater portion of the population, i.e., breast cancer and leukemia. The government also generally funnels public funding proportionally to the numbers affected. Fact: Way more adults suffer from cancer. I'm not saying what is fair or not fair or how I think it should be changed. I just think childhood cancer should be against life rules! I don't know that I can change the world, but I know I will more diligently donate blood and support children's cancer organizations, especially neuroblastoma.
Tuesday, June 29, 2010
-a little nauseated today
-additional drugs have helped
-slept most of the late afternoon since most of the night was spent waking to pee every 2 hours
-starting to feel some of the painful side effects of Vincristine (chemo drug)
-there's a drug for that too
-Also named William
-Also 8 years old
-Both like to play Wii and DS and laugh how both their moms always forget to plug in their I.V.s. Hahaha.
Ryan and I saved a ton of frequent flier miles and money to take a cruise or trip to Hawaii for our 10th anniversary. That was last year. The trip never happened. I convinced my wonderful husband, that I would find more lasting joy in spending most of the money on some remodeling and paint. We sent the boys to Idaho for two weeks and Ryan and I spent a ridiculous number of days painting 22 ft. ceilings and walls. But I love the paint every day and it finally made our new home start feeling like our own. It was actually one of the best anniversaries because we spent so much time together talking, listening to music, and doing things locally like canoeing, going to the drive-in, and taking walks. I assured Ryan that I was not sentimental with numbers or milestones. We could take a trip on our 11th, or 12, or 17th... or not even wait for an anniversary. I'm a good wife like that. But I better get my trip one day!:) (I guess I should say "our" trip!) I think I get that from my mother. I believe she's been waiting for a trip to Hong Kong since the '80's. Their miles kept getting used for boring places like France and Zimbabwe!
Today is our 11th anniversary. It is also the day Lego Harry Potter is released. William has been counting down the days ever since he found out the date several weeks ago. So we are going to celebrate by eating yummy take out and watching William play his new DS game. Like painting the house, it just feels good to be together and focus on loving one another and caring for our son. I can't imagine where I'd rather be or what I'd rather be doing. Okay, that's a complete lie. The list is long before this and this was never on the list. But it's what it is and we'll make the most of it.
Monday, June 28, 2010
I had an awkward mommy moment today. The nurse and anesthesiologist explained how his anesthesia would work for the bone marrow aspiration. The procedure is about a 10 minute ordeal so they use a liquid medication that lasts about 30 minutes. It is inserted directly into his Broviac. The drug puts him into a deep sleep within a matter of seconds. I was allowed to stay with him until he fell asleep. So here's how my "moment" played out. William sat in his bed playing his DS as the Child Life specialist, Jen, explained what was about to happen. I stood on the other side. The anesthesiologist started to slowly push the meds into his chest tube while William was thoroughly engaged in MarioKart. Literally, within seconds, William complained of a funny taste in his mouth and closed his eyes and the DS fell into his lap. It was awesome! Seriously Awesome! I started to laugh and then quickly thought how possibly inappropriate it was to be laughing at my sick boy who was about to have a very painful procedure done! I back pedaled a bit and commented with a smile how amazing that was.
Ryan and I have set a new goal in connection with our quest to shovel the calories into William---not to shovel the calories into ourselves! This is serious willpower, folks! It's is not an easy task to make a milkshake the size of one serving. Who loads ice cream into a blender in quantities that will produce 1-2 cups of total milkshake output? We obviously don't! I'll spare you the details of his diet, but I am an increasingly happy mother because of his eating habits the past 2 days. (Thank you for the prayers for his eating). We'll see what the scales tell us in a few days. However, I will add that I grilled a flank steak and 6 chicken thighs last night and made a double batch of lemon rice just to bring to the hospital for William. He's eaten that for lunch and dinner today.
The rest of the excitement for the night appears to be MarioKart races with dad on the Wii. (William asked to go for a walk this afternoon to find the Child Life ladies to see if they had a Wii for him to put in his room). Otherwise chemo is pumping into him and I'm heading home from the hospital so Ryan can spend the night making sure William pees every 2 hours.
(post from Lisa and James to come soon with more details!)
And William let me shave his hair with a #1 blade on the clippers. He cried, but then decided he liked it better because it itched less and he didn't have to use the lint roller as much on his pillow and couch.
The brothers, minus Soren, followed his example (not completely bald, just a #1 blade on the clippers), but not before living it up for a bit with mohawks!
The mohawks came off and Soren still clung to his own sense of style!
Saturday, June 26, 2010
At UCSF Children's Hospital we met with the head of the bone marrow transplant program. In preparation for his bone marrow transplant several months down the road, William will first need to have his stem cells harvested for use in the transplant. A transplant will be needed because the very intense chemo in his 2nd phase of treatment will destroy his bone marrow (and hopefully any residual cancer cells). If his bone marrow is clear of the cancer cells after his 2nd round of chemo, he will go to UCSF for the harvest when his white blood cells are recovering, about 2 weeks after starting his 2nd chemo cycle. In preparation for the harvest, he will get shots to push his stem cells out of his bone marrow and into his blood so they can be collected.
A double catheter will be put into a large vein in his groin, and blood will be taken out and the various components of the blood will be separated by density in a centrifuge. The stem cells will be taken and frozen for use in the transplant and the rest of the blood will be put back in through the catheter. The procedure is done under local anesthesia (yes, he'll be awake, but sedated with morphine) and should take 4-5 hours. Most of the time they're able to get enough stem cells the first day, but it is possible he'll need to have more cells collected on the 2nd day.
We also learned a bit more about how things will go with the transplant and the hospital stay for up to 6 weeks- details for another day, since there is a long way to go before we get there. After the consult with the doctor, Will was hungry and wanted a burger. We walked about 8 blocks and even though he had a hooded jacket and hat on, Will thought he was going to freeze to death. We ended up at a great burger place and Will ordered a 1/3rd pound cheeseburger. I had my doubts that he'd eat much of it, but was glad he wanted to eat so much. He declared it was "even better than In-N-Out" and made pretty good work of it.
Today William enjoyed wading and playing in our neighbor's pool and riding through the pool on my shoulders (he isn't allowed to swim with his chest catheter). It was great fun. His hair continues to fall out, and Julie gave him an even shorter haircut tonight. He had a hard time with it, but he'll be less itchy and will hopefully get used to his new look. He says he'll be keeping his hat on. We had success with getting him to eat a shake - carnation instant breakfast, vanilla ice cream, chocolate milk, peanut butter, banana, whole milk. What's not to like?
William is doing well. More hair continues to fall out and one spot is almost bald. It is hard for me to think I left a boy with a full head of hair and now he is almost completely bald. He no longer looks like one of the healthier kids on the hospital floor. He is just like them. It's a sobering image as I reflect on what has happened in a month. Yes, it's been 4 weeks or 30 days. But who's counting?
At the beach, the boys spent all their time in the sand and water. Our house was on the beach front and our front patio spilled onto the sand. Our lucky neighbors got to wake up to little boys already digging holes!
I slowly filled my bucket, but the reality of my life still feels a bit like a dream. The four boys headed to Utah after the reunion and are staying with my parents for 3 weeks and then it's off to Idaho and then San Diego with their Murdoock grandparents for the last 2 weeks of July. It's hard for us to not have our other children around, but we knew this would eventually be a reality at some point. While hard, it's helpful. During their absence, William will be able to complete 2 rounds of chemotherapy, have his stem cells harvested, attend oodles of doctor's appointments, have several possible unscheduled hospital stays (hopefully not), and be on the upswing from his most recent chemo dose before his brothers return just in time for school to start. But I must add, this is all subject to change and may be delayed at any moment. (I'm trying to embrace my inability to plan and control!)
Ryan and I are often asked if we stay with William all the time at the hospital and if it's required. The answer is yes, we have someone with him all the time and I'm not sure if it's required, but it's a no-brainer. We are William's advocates and we know him best. Our friend, Chrissy, who is a hospital expert with her many stays with her daughter, reminded us that we will know more than the nurses at times and it's okay to tell them NO. We've had fabulous nurses, but I have had to say no to one roommate situation. It was quickly remedied. Also, William is not supervised by hospital staff constantly. It he needs something or his I.V. is beeping, we must call the nurses. He isn't quite old enough to sometimes know if he needs something, i.e., pain meds. He does know how to call the nurse, but his assessment of needing the nurse is calling them to help him advance to the next level on a video game. Ahh, how we all have varying needs and wants!
Ryan and William made the trip to UCSF Children's Hospital yesterday (Friday) and got the run down for what will be happening with the bone marrow harvest in about 2 weeks. That will have to be a post on it's own later tonight. Right now I'm going to focus on unpacking, laundry, and errands before we head back to the hospital on Monday morning.
Thank you to my parents, brother, sisters, their spouses, aunts, uncles, cousins, nieces, and nephews for the outpouring of love and support. I love you all dearly and am so blessed to be part of your family!
William is happy and starting to eat. Although it's no much, it's a start just the same. The doctors meant what they said and they said what the meant. We're trying to be faithful, 100 percent!
Thursday, June 24, 2010
William was discharged from the hospital in the late afternoon today. He has a mild case of pneumonia and will be on antibiotics for 4 more days. The main thing the doctors want him to focus on over the next few days is eating (critical with his high dose chemotherapy). We'll be hoping that he likes carnation instant breakfast a few times a day, that being back home stirs his appetite, and we'll be offering ice cream with every meal (hopefully I can resist, but if he needs an example...).
Before leaving the hospital this afternoon, William was interviewed for an episode of the PBS show Healing Quest. It seems to be kind of an alternative medicine show and they are doing a story on the dogs in the hospital and how they are helping the kids. Dad and Grandma were even interviewed, but William and Millie were the stars. William even put on his Yoda shirt for the occasion. It was a great way to end the hospital stay. They told us the show would be aired later this year - we'll let folks know when we know anything more than that.
We headed straight from the hospital to the Esquire theater downtown to go see Toy Story 3 in 3D IMAX. Good times! And William enjoyed his longest walk in weeks - on the state capitol grounds.
Friday we're off to San Francisco for a consult with UCSF Children's hospital regarding the stem cell harvesting and bone marrow transplant. Then Monday William gets another bone marrow biopsy to see if his marrow is clear of the tumor cells (if so he'll be having his stem cells harvested in about 2 weeks), and then starts his 2nd cycle of chemotherapy in the hospital for 4 or 5 days. Julie will be coming back Friday night from the beach and the rest of the boys will be going to Grandma and Grandpa Bennion's house for a while we navigate the next couple rounds of chemo and stem cell harvest, and trying to keep Will out of the hospital in between (didn't do so well with that over the last week or so).
I can't thank you all enough for your love and prayers. If you'd like something specific to pray for, please pray for Will to regain his appetite and for Will's bone marrow to be clear of the tumor cells on Monday. (If that's not enough for you, you could also pray for Julie's safe return so you don't have to keep reading my posts...) We'll see if we can get another post from William with the perspectives from the front line, and hopefully we'll do a better job of getting some pictures up soon.
Monday, June 21, 2010
William said it was hard to breathe when he came downstairs this morning and his cough had gotten worse. At the clinic visit this morning he had a low oxygen saturation, elevated heart rate, and was taking quick, short breaths. Apparently this is not common, especially since his white cell count was back up. The doctors seemed pretty concerned so he was quickly admitted to the ICU and given an echocardiogram and a chest x-ray. The echo came back normal, alleviating concern that he may have fluid around his heart. The chest x-ray showed possible signs of very early stage pneumonia, but it was too hard to tell. Blood cultures were ordered to check for bacterial and viral infections, and other tests were done (wow, I didn't realize you could stick a swab that far up someone's nose) to culture several potential viruses. Since the scary problems were ruled out, now we wait 48-72 hrs for culture results.
Another reason they think he has an infection of some sort is that his white cell counts are much higher than normal, indicating his body is trying to fight something. Apparently when the white cells come out in such force, the extra cells hang out in the lungs and can cause transient pneumonia. Chemo seems to wreak havoc on just about everything, so it better be working on the tumor as well! The new food request today was Doritos. Hair is coming out in greater abundance today, but no completely bald spots yet. All things considered, Will is in decent spirits.
He had a visit from his golden lab friend Millie, and was told that he could be in a PBS show that is being filmed about Millie this week if he is still in the hospital. Stay tuned on that one - it was the first time I have heard Will say he hopes he will still be in the hospital a few more days. I hope not - can't he just come visit and be a sick kid actor when Millie gets her big break?
Sunday, June 20, 2010
William's new summer haircut
Saturday, June 19, 2010
After spending the last 2 nights in a "sleep chair" (misnomer) at the hospital, hopefully I can stay awake long enough to finish this post. The good news is that William has been fever-free since Friday morning, his white cell count has jumped tremendously today, and he does not have a blood infection, so we were discharged to retun home this afternoon. Hallelujah - we burned rubber and darted for the getaway car.
William got another blood transfusion (to boost his red blood cells) before we left the hospital today, which should hopefully keep his energy up for the next few days. For the most part Will was in great spirits today - one of my favorite moments was when he was playing Lego Rockband on the DS, had his headphones plugged in, and was rockin' out and singing along - didn't have a care in the world.
Will's main frustration today was his thick blonde hair continuing to fall out and get in his mouth and make him really itchy. He also didn't appreciate my consistent insistence for him to eat (to limited avail) - apparently the hospital can't even get a PB&J sandwich right, and William threw it back up, as if to prove a point.
We hurried home after the blood transfusion (which takes 3 hours) and got William set up on the back patio for a haircut. He was brave to let me cut his hair, but how wrong can you go with clippers? Plus grandma was there to fix my rookie barbering. Will wouldn't go for a mohawk or a buzz, but I cut it as short as he'd let me (we'll have to post pics after Julie gets back with the camera). Things actually turned out very well. So we'll see how long the remaining hair lasts. I keep reminding William that losing his hair is a good sign - it means the chemo medicine is working and shrinking his tumor too. It also means he can get some new hats.
So we're looking forward to an uneventful next week at home - the house will be quiet (naps anyone?) and Will's white blood cell counts are rising quickly so he shouldn't land back in the hospital until his 2nd round of chemo starts in just over a week. William and I will travel to San Francico at the end of next week for a consult at the UCSF Children's Hospital where he will be having his stem cell harvest and bone marrow transplant - so he'll get a chance to at least see the beach this next week too.
William is very happy to be back home, and he has been chatting up his visitors this evening like the William we know and love.
Friday, June 18, 2010
Yesterday was a day filled with childhood fun at home. It began when a family friend dropped off squirt guns for the four boys at home- a fun way to be active and cool on a warm Folsom morning. While enjoying splashing bare feet on wet cement and the hose soaking warm puddles on the lawn, (isn't filling squirt guns at least as fun as squirting them?) I knew that this particular creature comfort was one Will would enjoy if he were at home. Chemo has made him hot and sweaty from time to time-a symptom I can fully understand since it is a side effect of my own post-cancer medication. Little boys should not have the same intense hot flashes as a 60 year old grandma!
A friendly neighbor often shares "kid stuff" with the Murdock boys, some of which are second hand or "found " items. Such was the case yesterday when, much to their delight, he gave them a grotesque-looking rubber mask with black gorilla-like hair. What 6 year old boy wouldn't delight in "morphing" into a weird looking warthog creature with black hair, hoping to freak out Grandma? (or any other passersby?) To my credit, the appearance of Clark's monster face was only startling. I was, however, more grossed out when I thought about who else might have breathed and sweat in that mask prior to Clark. All the boys have had the importance of not sharing germs drilled into them, with even more urgency since William's white cell blood count bottomed out recently. So it didn't take much coercion to get Clark to toss the monster mask. Good thing yesterday was garbage day-it didn't permit any second thoughts for the boys at home. Will is facing a scary monster too, but one not so easily tossed aside.
When the squirt gun craze diminished, and the temperature rose, I broke out the ice cold lemonade on the patio. If you know Soren at all, you know that he enjoys crunching ice, but only crushed, not in cubes. (Any piece deemed too large was thrown into the flowers to water them.) Brows and heads were cooled by the lemonade and the appearance of a cute 4 year old girl from next door who came over to play. The boys and Brooke went inside to the playroom to play dress-ups.
Unsatisfied with the choice of dinosaur, cowboy, transformer or ninja costumes, Brooke ran home and returned quickly with her pink Minnie Mouse ears and a silver princess purse. She was deemed the queen a bit later when the troupe moved to the trampoline outside. Her job was to choose a winner in the trampoline contests. Envision this superhero assortment-Clark was a ninja turtle, Cameron was a Bumblebee transformer, Nathan was Batman with mask and cape, and Soren as a "thoopah tigah" in a furry tiger costume. Their antics and gestures again reminded me of William. Clark's ninja bandanna around his forehead somehow emphasized his facial resemblance to Will, as did Cameron's long legs in his costume. These boys' energy and super presence underlined Will's absence from the group, and his limited energy.
Another favorite pastime of the boys yesterday was playing Legos. Spurred by many gifts of Lego sets, including a large Lego Space Police Station Will got when he was discharged from his initial hospital stay, the younger Murdock brothers have been busily building and re-building their own creations. William's large and impressive space station has been placed upon the pool table, within tantalizing proximity of 8 smaller and more impulsive hands. While I don't want to portray myself as having legitimate Lego building skills, I have developed my Lego policing skills. I can recognize tiny pieces on the floor from a distance, even amidst the carpet loops. I have also honed the skill of reminding the boys which pieces/vehicles are theirs to own and dismantle or reassemble. A finished Lego project is the result of many steps and multiple unique pieces. Another reminder that Will's recovery project will be long and carefully scripted. Every Lego project has some unexpected pieces that fall off, and need rebuilding, even with skilled attention. Such is the case with this last bump in the road for Will. We cannot wait for Will to return home to be annoyed temporarily with his brothers for crashing some parts of his Legos, and then enjoying rebuilding.
Although Julie spent yesterday, and the previous night and day at the hospital with William, she was organized and well-prepared to leave this morning with the other 4 boys to attend the annual Bennion Balboa Bash (family reunion at the beach). While Will's mom, brothers, Bennion grandparents and many cousins romp, play and laugh together, William continues to realize that fighting cancer is no day at the beach. It was hard for us to hear Will say, upon his re-admission to the hospital, that life, after all, is not fair. Knowing that she and the other boys will not see William for the next week was hard for Julie. The absence of Julie and the Folsom band of brothers will feel strange to me and Ryan. The visible presence of boys loving each other and having fun is a comforting distraction. Julie is better at making Will's favorite foods at home, and getting him to eat his un-favorite foods at the hospital. But sensing the love and support across the miles from family and friends has been something we all have felt. Cards, e-mails, blog comments, calls and prayers all contribute to our sense of well-being, despite someone who is a good boy, and special to so many, is fighting an illness that is so difficult.
So much for my musings. Here is a more concise version of William's day at the hospital today: William's temperature continues to decline, but he must be fever-free for 24 hours prior to discharge. Hopefully that will be sometime tomorrow. His white blood cell count is also on the rise and his culture is expected to come back negative for an infection (the other 2 conditions needed for discharge).
William now is the proud owner of 13 Nintendo DS games, due to the generosity of many friends, including the 6-yr old grandson of a friend of Ryan and Julie's who brought a new baseball DS game, a homemade card, and 16 cents in a baggie to give to Will.
Will's tendency to run his fingers through his hair and twirl it between his fingers has prompted a suspicion that he may be beginning to lose some hair. There is still plenty on his head, but he had to get out of bed twice today to brush it off his shirt and neck- it was itchy.
His gums are quite swollen, and he has mouth sores from the chemo. Eating is painful, but is helped by swishing a pink liquid which soothes and cleanses the sores. Grandma Bennion's gift of a new watch with an Indiglo face (self-illuminating) helps him be independent to time how long he has to swish and gargle. In general, he knows the drill, and is a well-informed patient.
Speaking of which, William has to measure input of liquids and urine output. He proudly announced to me this morning that he had set a new record for his output- 625 cc of pee at one time! See what an IV drip and too many "vitals" questions do for an 8-year old?! He has had aching legs and muscles which respond to stroking, massage, and Tylenol.
William's ability to multi-task has increased through his stay at the hospital. He can simultaneously watch cartoons, play a DS game, have his blood pressure taken, and drink at Grandma's urging all at the same time. He is still refusing most hospital food. Thank goodness Gatorade is not just for athletes, and there is a McDonald's and a Jamba Juice between Ryan's office and the hospital! Also, yogurt at the hospital does come in a flavor that Julie buys at home.
And lastly, one of the programs here is to give children who are fighting cancer Beads of Courage-a bead to commemorate each of the various steps along the way to recovery. Today Will got 50-yes, FIFTY beads due in part to 15 sleepovers in the hospital, for one thing, and various other milestones, such as surgery and chemo. We have a brave good boy. He has brave, good parents. It's been good to be beside Will today at the hospital, and not just because it's been a more sedentary day than the last two days at home with his four little brothers!
Thursday, June 17, 2010
I tell my children that "hate" is not a word we use in our family. We can dislike or not appreciate. Perhaps we'll have a lesson one day when "hate" is appropriate, but I haven't figured out yet how to verbalize it in appropriate terminology to ages 3-8.
I hate what it is doing to my child, what it is doing to our family, what is does to other children and families. Why can't we learn whatever we are supposed to learn some other way? And as my dear friend, Lisa, so poetically puts it: "Save it for a Lifetime movie!"
Today I'm angry that we're back in the hospital for an unscheduled stay. I'm angry that we never get any good news from any labs. We're not even one month into a possible 1 year of treatment, 5 more years before being declared cancer free, and a lifetime of regular exams to monitor various organ functions (esp. the heart) due to his intense chemo.
I want to say it's not fair, there is all sorts of heartache that we all must experience. I just wonder if there is anyone out there who feels like their life was not that hard. I suppose it all comes with time and perspective. I hope to be able to say one day that I'm glad this was one of our trials, but I just don't have the ability to go there today.
The night we found out William had a tumor and it was probably cancer, our bishop (church leader) came to our house to talk to and comfort us. He gave us lots of good advice and counsel--much of which is hard to remember because my emotions were close to the surface, but my sister was there and she reminded me tonight of some of the things that she heard (knowing we would likely forget). She said a lot was said to William about being happy throughout this. I was to be patient (yeah, I'm working on that and see the need) and learn how to let go of the little things that really don't matter. (Does mopping the kitchen floor count?) Ryan was told to be a strength to me, but to also let me be a strength to him. (I'm working on that, but it kills me to see him get emotional). We remind often ourselves that this is one of the toughest things on a marriage. We were both reminded that this would be a long, long process.
Tonight we had dinner together at the hospital. Thanks for the pizza, Jamil! William stayed in his room with Grandma since we are now in a sharing room (boo) and 5 boys and 3 adults does not a quiet room make. The rest of us headed out to the picnic tables on the grass in front of the hospital. It was pleasant outside and the boys had room to run around. All was dandy until Clark said he had to go the bathroom really, really bad. We told him to hold it because we had just taken them all to the bathroom 20 min. earlier. He replied, "But Soren is going." I spun around to see Soren standing next to a big redwood tree (remember we are on the front lawn of the hospital) with his shorts and underwear around his ankles, peeing on the tree! Oh my! Can't my boys at least figure out how to do it without pulling their pants down all the way.
A friend sent me this quote today and it helped me get out of my grumpy mood. Thank you, Lauren.
"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell." ~Lance Armstrong
Whatever happens, I'm going to keep hoping for the best and appreciate every moment I have with my children. So William fell asleep this afternoon and I crawled into bed with him and put my arm around him and thought to myself, "I can handle days like this when all I can do is just hold what I love."
Wednesday, June 16, 2010
Today was fairly uneventful. The boys woke up earlier than I prefer. I lay in bed waiting until absolutely necessary to get up. The boys were full of energy. I continued my sanitizing kick. I sorted through clean laundry (BIG THANK YOU to Marva the laundry/ironing goddess!) And then my wonderful mother-in-law swooped to the rescue to take the younger 4 to the movies. William and I had some peace and quiet. He watched T.V. and I worked on packing suitcases.
My family has a family reunion next week. My boys have been looking forward to it for 2 years. We've decided I will take the 4 boys and go fill my bucket with the special love and support that only family can provide. I decided to try to get packed today even though we leave on Friday because William has a clinic visit Thurs. that I had the sneaking suspicion would possibly last longer than expected. Did I really say "expected?" I obviously have a slow learning curve. Nothing with cancer can be expected! READ ON...
William seemed fairly lethargic today so he spent most of the day on the couch. At 4 pm I took his temperature--something we do 1-2 times a day just to be vigilant parents. I just bought one of those nifty thermometers that you just swipe across the forehead and you have a reading in seconds. But I'm not totally there with the trust factor of it. If he reaches 100.4 I must call the doctor immediately and he is admitted to the hospital. His temperature was 101.4. I panicked. I took it a second time. Same temp. I ran and got the oral thermometer. Same temp. Tried again. Same temp. See a pattern? Denial and control!
I called the doctor and was told to pack a bag and get to the hospital immediately. They would be expecting William in 45 min. The protocol for this is a follows:
1) Fever: usually means infection (probably since he has no white blood cells right now)
2) Automatic hospital admittance
3) Blood and urine tests to determine if any bacteria/infection present
4) Antibiotics started by I.V. within 1 hr. of arriving at the hospital
5) Minimum 24 hr. stay while receiving antibiotics and awaiting lab results
6) If negative, he can go home if his blood counts are up
7) If positive, he stays in the hospital for 10-14 day on a continuous antibiotic I.V.
I'm a mess. I started crying. I know the hospital is always a possibility, but he seemed to be doing well. And then, as I'm scrambling around my room throwing things in a bag, I'm composing funny titles and things to put on the blog about this. Seriously, folks! I think I'm losing it. I guess the DS is William's coping mechanism and the blog is mine. I know exactly what's going on around me, but in my head I'm finding a nice little corner to process things. And to make matters worse, I can't even remember the funny things I thought of. I guess I laughed in my head and moved on!
So far we know his urine has small amounts of bacteria which signal a possible infection but not enough to be sure. The doctor was notified and he's waiting for the rest of the labs to make a final analysis.
So we wait again. I feel a little like I'm living the movie, "Groundhog Day"! In the meantime, I've found what I can control: a list of what to grab when running out the door for an unexpected hospital stay.
Included on my list that I missed tonight:
cell phone wall charger
pillow-(makes such a difference at night on a crummy recliner bed)
Simba-William's stuffed lion
Tuesday, June 15, 2010
I force fed William a hot dog for breakfast. Yes, this may become a trend because:
1) he agrees to eat one
2) it's meat/protein
3) it's lots of calories.
Now I've made my peace with the guilt I feel for grilling hot dogs before 10 AM. And perhaps while I'm in the confessing mood, I have fed my children cookies and ice cream for dinner on a hot Sunday afternoon and I'm a better mother for it!
William received a new DS game from all our neighbors today and while he was playing it, I discovered an amazing thing. He will open his mouth and eat what I put into it (within reason, of course) while in the zoned out state of video gaming. I know, I'm sounding like a horrible mother who caters to every whim of a child. But as I laughed about it with Lisa today, she pointed out that many overweight people get that way by unconsciously eating while watching t.v. or playing video games. My mission right now is to pack on the pounds onto my very scrawny 8 year old who is tipping the scales at 59 lbs. In the spirit of competition (for those that know my siblings and father, and I guess me too) William is in danger of letting his 6 year old brother pass him up! We can't let that happen!
William seemed more tired today so I'm assuming he'll get another blood transfusion on Thursday. But who knows? (It's a life theme I'm catching on to). I won't know until we show up for the blood draw. He seems to be having more pain in his bones, or he's learning to actually tell us he has pain. What a tough kid! The pain could be a side effect of some of his meds and/or part of the disease. I gave him a bath and changed the dressing on his Broviac (central line in his chest). He felt much better as I let him just sit in the tub and soak. It felt so good to just care for him. I hugged him for a while before he went to bed and stroked his hair. I know his hair will probably start falling out soon and I feel prepared, but I'm sure it will still come as a shock. Losing his hair is William's biggest fear right now. And that's good. I'm glad that's his biggest fear. I wish it was mine.
Ryan and I have been riding on some kind of crazy roller coaster. Since we've been home, the physical exhaustion has really set in. But we are so, so, so glad to all be together. The emotional exhaustion never changes. One of the hard things about this process is the feeling of limbo we can't get rid of. It was torture waiting for a diagnosis for 10 days with no goals to focus on or work toward. Now we have goals and a plan, but there is nothing we can really do to guarantee that we achieve our goals. We can do everything the doctor tells us to do with precision, but William still may get an infection, his ANC may take longer to recover, the tumor may not respond the desired way. . . . Everyday we know William's health could have a setback. We tried to calendar his treatment schedule, but that got overwhelming because so many things that we can't control could suddenly set us back 1 or 2 or 3 weeks. Maybe more! Then everything shifts.
Do you see a trend? I want to control things. I want things organized. I want to see the light at the end of the tunnel. Perhaps that is some of the refining that is taking place in me. That's a good thing. I'm learning and practicing faith and hope. I do have faith. I have lots and lots of faith that William can beat the odds. I do have hope. I have lots and lots of hope that what happens on this journey will make us all better, stronger, and more loving.
Monday, June 14, 2010
Nadir- The lowest level the blood counts reach. ZERO. That was William's count today. So we were on high germ alert since he basically has no immune system at the moment. And I was reminded, yet again, of what I have little or no control over in this journey.
Nausea- What William experienced while eating dinner. This was the first bout since the morning after chemo started. I quickly administered his nausea drug and he's felt better since. (Natalie-your dinner was great! William was eating something else.) Then I told William he was supposed to save that for the pink carpet. He said, "Well Daddy can go pour what's in the bowl on the pink carpet." I'll pass on that one.
Sunday, June 13, 2010
His response: "Spiritual health is just as important as physical health."
We attended church today as a family. It felt good. It felt normal. That's just what we do every Sunday. Today, I pondered a lot about spiritual strength as we all hoped to fill our spiritual buckets. Ryan and I have reflected upon our spiritual strength quite a bit the past two weeks. Our spirituality, our convictions about God, his plan for us, our purpose on earth, and what happens after death are all a huge part of who we are and how we view the world and act accordingly. Our beliefs have given us great comfort and continue to fuel our hope in the saving power of the atonement of Jesus Christ.
We all pass through very difficult times and trials. And I'm glad I have my trials and not some that others have. When I step back and look at what we are going through right now, I would obviously never wish or hope for this, but interestingly, I don't fear. I know that we are being watched over. We have felt an enormous sense of peace and comfort even in the moments we felt our world crashing in. We keep going back to those moments to draw strength. We also feel strongly that we have felt these things as a direct result of the many prayers offered in our behalf. Thank you.
I believe events in our life prepare us without our own awareness by providing growth and understanding to overcome things that may cross our path later in life. Many of you may know I have a twin sister who, due to complications at birth, was born with severe cerebral palsy and is a quadriplegic with abilities similar to an infant. My parents have cared for her in their home and raised 7 other children. But I must add, with a family that size, it was a collective effort! Having a family member with special and unique needs teaches things that are not easily taught or learned. I know I am a more loving, compassionate, selfless, patient and understanding person because I grew up naturally serving her needs. I am not even close to proficient in any of those categories, but I am closer than I would be if we had not been blessed to have her be a part of our family.
For our family, we can gain increased love and appreciation for one another and increased faith in the plan our Savior has given us. We have the unique opportunity to truly focus on the things that matter most to us and teach one another about sacrifice, love, selflessness, compassion, patience, humility.... Lifetime movies just don't cut it!
Today I squeezed each of my boys a little harder, kissed them all many, many times, and told my husband I still love him dearly.
Saturday, June 12, 2010
William is doing great today! It's amazing what a little dose of home and home-cooked meals can do. He spent the day with us downstairs working on Legos at the kitchen table or laying on the couch taking a rest and watching a movie. He's gets fatigued quite easily, but is much happier. His sense of taste and smell are still altered, but he's eating. So we cook what he says he feels like. For instance, we fired up the BBQ for breakfast because he felt like a hot dog--grilled, not boiled and with Bertmans Ballpark mustard, the stuff Ryan grew up on and I ordered off the internet that they serve at Jacob's Field in Cleveland (for all you Indians fans). We made a fun memory! Lunch was the rest of his Jamba Juice from last night and dinner was lemon rice.
Ryan and I are exhausted. Physically, emotionally, the whole shebang. It still seems surreal what our life has become. I found myself caught off guard today when I went to the medical supply store to inquire about renting a wheelchair. The clerk asked, "Adult or child?" It hurt to say, "child." Then he asked, "What happened?" I replied," My son has cancer." Cancer. My son has cancer. Saying my son is undergoing chemotherapy sounds less severe, but cancer is the word that is shouting at me in my head. Note to self: work on the softer, gentler approach when talking to strangers.
Before checkout yesterday, our oncologist, Dr. Yim, told us that Dr. Shimada, THE neuroblastoma expert in the nation/world, at L.A. Children's Hospital reviewed the biopsy pathology and confirmed their findings as Stage IV Neuroblastoma (sub-type: stromal pore). She is very interested in and will be kept current on William's progress due to the inconsistent presentations of William's tumor, i.e. his age (over 5), lack of physical symptoms, lack of calcifications throughout the tumor and lack of elevated ferritin levels in his blood. We're taking that all as good news since we don't know any better.
It's good to be home.
Friday, June 11, 2010
Quick update since I suspect my evening won't be slowing down.
William will be discharged this evening. His red blood count is down so he's getting a blood transfusion before we go. They just hooked him up and that should take 3-4 hours.
He did great this morning in physical therapy and negotiated the uneven surface of the lawn and some stairs quite well. He is quite weak and I'm grateful the physical therapists informed me of his limitations because I'm afraid I would sometimes be inclined to push him a little too far. He is coming home with a walker, but he should be able to get around the house without it. If we go on a walk, we should take it with us. For example, we live on a court with about 7 houses and walking around the court would thoroughly exhaust him and he couldn't do it unassisted. It's weird to see him so weak and sick when 2 weeks ago he was running around the playground playing kickball.
His sense of smell and taste seem to be altered and affecting his appetite. He's looking forward to coming home and making mom a bit of a short order cook. We'll see how it goes, but for now, his nutrition is one of the few things I can attempt to control.
I have an wonderful mother-in-law who has taken care of the other 4 boys this week. We are truly blessed to have such supportive family members and to have many that live close enough to help us. Thanks Mary and Erik, Rich and Paige.
I've got 3 hours to kill while the blood transfusion occurs. I think I'm going to curl up next to William and take a nap and dream of what great family fun we'll have at this time next year when we'll hopefully be able to have this all behind us and it will feel like a dream.
Thursday, June 10, 2010
It's a struggle to get him out of bed to go to the bathroom. Not because we aren't physically strong enough or because he isn't able, he's just discovered how convenient it is to roll to one side and pee in the bottle we use to measure his outputs. Boys! It's already so convenient for them and now this!?! So we have a deal (in the hospital and only because he's being pumped with fluids) that he gets out of bed during the day and at night we'll hold the bottle. Oh geez! I didn't realize I signed up for some things when I signed up for motherhood!
Last night (pardon the missing post) William had a sleepover with Grandma in the hospital. The best part was getting to watch a dvd of Shrek The Final Chapter. How is that, you ask? It was just barely released in the theaters. Thanks to an awesome Aunt and Uncle in NYC and a trip to the Chinatown bootleg district (shh!)....We had a good laugh. And Ryan and I spent our first night together at home in 2 weeks just holding and snuggling our other boys. We'll unpack the bags we brought home from the hospital another day.
So yesterday and today have been busy getting ready for discharge. YES! DISCHARGE! He will finish chemo tonight and if all things go as planned, be home tomorrow evening.
We met with the nurse practitioner and went over in great length, the details of his treatment, calendar of appointments, dosages and schedules of meds, and the long list of limitations on our lives for the next 9 months. But we're taking one day at a time. To get to the point, we will be living a life of seclusion. The risk of infection is very high with the intensity and timing of each chemo cycle. Each cycle of treatment begins with a minimum 4 day stay in the hospital. Then he comes home, his blood count drops the first week, then it comes back up the next week, then he is re-admitted for the next cycle. During the home stays, he has 2 blood count checks a week and possible blood transfusions if his red blood count and platelet number drop too low (very likely to happen several times throughout treatment).
Today was full of other excitement for William! It started out with physical therapy, for which he was not thrilled until Millie the dog showed up. William got to walk Millie around the floor for exercise. It's amazing what a pet can do! Too bad I'm not getting suckered into that one. They also carry a lot of bacteria and germs!
William also had a visit from his 1st and 2nd grade teachers! I just love it that teachers are still his heros!
The other big event of the day was the a visit from the wish fairies. The children who spend a long time in the hospital are asked to make 3 wishes--usually along the lines of a favorite meal, toy, movie, etc. One is granted. William's received a big space police Lego set. He was thrilled.
We are in good spirits. Will sipped his protein shake, but Sam helped boost his caloric intake with a Peanut Butter Moo'd from Jamba Juice. (highly recommended to those who thought they only served fruity things!) Thanks Sam! We had a heated discussion (as heated as you can get with an 8-year old hooked up to chemo drugs) about what we need help doing and what needs to be done on our own and what William would like me to cook when he gets home. But we'll focus on one day at a time and get this fighting boy home!
I know Julie is working on a post but this morning she was distracted playing the Wii (slacker). Tonight she was busy urging (hahaha, it was a firm and frustrated fight, but Julie would call it an urging) Will to drink a protein shake (yuck!). So there is no update yet because the boy has energy to test his mother. If you don't know William, you should know he is a smart boy and smart boys test their mothers. Shhhh, don't tell Julie, but I loved sitting outside the hospital the other day talking about all the business William was giving her. You know I love William.
Tuesday, June 8, 2010
William started chemotherapy Monday night. He is doing well today and is not experiencing any ill side effects at the moment with the nausea under control. He is receiving continuous intravenous chemo infusions for 3 day. His appetite increased ever so slightly today. He refused the unseasoned, unbuttered, cooked carrots and fish sticks that the hospital brought him and opted for the french fries and chocolate shake from Lisa and James. What a smart boy I have! However, I did insist William drink his 6oz. chocolate protein drink. (YUCK---because I did taste it!)
Today we cleaned up. We stabilized our emotions, wiped our tears, and started rebuilding our courage. It's going to be a long, hard battle, but we can handle it. We have to and we will.
A family from church stopped by today to bring a cheery poster from all the primary children with photos and well wishes. McCall shared a scripture on the poster that brought comfort today. "The LORD shall fight for you, and ye shall hold your peace." Exodus 14:14
Another one I was reminded of today is Joshua 1:9, "Be strong and of a good courage; be not afraid, neither be thou dismayed; for the Lord thy God is with thee whithersoever thou goest."
Our faith is strong and we know that we are being watched over and carried in our hardest moments. We've reflected on various recent impressions and events that have strengthened us for this journey before we even knew we were on it.
The basic outline of William's treatment is 3 phases.
6 cycles of high dose chemotherapy
Bone marrow harvesting
Surgery to remove the shrunken tumor
1 cycle very aggressive, high dose chemotherapy
Bone marrow transplant
The entire process is estimated to take up to 9 months.
So we're taking lots of deep breaths, preferably in fresh air, and taking one day at a time because that's about all we can wrap our head around at the moment and all we can control.
And if the vomit starts, I'm glad I haven't replaced the lovely pale pink carpet that we inherited with the purchase of our home 2 years ago!
Monday, June 7, 2010
WORD OF THE DAY
Neuroblastoma-Sounds like a Star Wars character, so it seems like an appropriate name/diagnosis for William's tumor.
Evidently, one of the things puzzling for the doctors is how well he is doing. He shows very few expected symptoms. We truly attribute this to the fasting and many prayers made in our behalf.
We will pow wow with the team of oncologists to be flooded with information at 2 PM today. They will explain in full detail their findings and what the plan of action is going forward.
We have been asked to refrain from googling, due to the flood of incorrect and anecdotal information on the internet, but they did suggest www.curesearch.org if we couldn't resist. We resisted...until this morning. And it felt good.
Here's the gist of what that website says:
Neuroblastoma is a solid tumor or cancer. It occurs in the developing cells of the sympathetic nervous system, called neuroblasts. The sympathetic nervous system is responsible for involuntary actions of the body, such as blushing, increasing heart rate, and dilating the pupils of the eye. The majority of tumors (65%) are located above the kidney. However, tumors can begin anywhere in the body. Other common sites are the chest, neck or pelvis. The disease often spreads from its "primary" location to the bone marrow, bones or lymph nodes. In fact, in many cases the disease has already spread at the time of diagnosis.
There are approximately 650 new cases of neuroblastoma diagnosed in the US annually. Neuroblastoma is the most common solid tumor outside of the brain in children. Most children are diagnosed as toddlers, but neuroblastoma can present in infants and older teenagers as well.
What causes neuroblastoma? Many researchers believe that neuroblastomas develop when normal neuroblasts (the immature cells of the sympathetic nervous system) fail to mature into nerve cells. Instead, they continue to grow and divide uncontrollably, leading to the growth of a mass of cancerous cells, or a tumor.
Researchers have started to identify mistakes, or "mutations", that occur in genetic material – the DNA – of neuroblastoma cells, but have yet to figure out exactly why those mutations happen in the first place. Many scientists believe that neuroblastoma and other childhood cancers are caused by a random mutation or mistake that happen during cell division.
We'll have heaps of knowledge in a few hours, but until then, we're eating chocolate!
Sunday, June 6, 2010
William was surprised by his baseball coaches and one of his teammates. They presented him the last game ball, signed by all his teammates. He loves it. The team picture with all his buddies in a goofy pose brought laughter. His laughter is sweeter music to my ears now. He also received several gifts from team member families that made him smile. And a huge thank you to Laura for an amazing team slide show DVD. Incredible and what a treasure.
I will try to post pictures later since it's my night to sleep at home and the camera card is at the hospital. Ryan is on hospital duty.
William wants to post again, so stay tuned. He was just too tired after today.
This afternoon was spent as a family. It was awesome to all be together for the first time since this journey began. We spent some time outside and Ryan and I had time to give hugs and kisses and just hold each of our sweet little boys. They are doing fantastic and got to see William's scar and Broviac. It will be interesting to see how the discussions evolve with them as we begin the juggling act of all our evolving responsibilities as parents.
William has lost a lot of weight and is quite skinny and weak. His appetite is slowly returning, but it is still a struggle when he gets so tired. His big moment was being able to be disconnected from his IV to walk outside with us for awhile. He was nervous because his balance is off, but he did great. He needed constant assistance and moved at a very slow pace, but his coloring improved with the fresh air. It is strange to think one week ago Ryan and I had a healthy, active child and now he is so weak he can hardly walk and his appearance is almost skeletal at times.
Tomorrow we anticipate more pathology results, but if it doesn't happen, we won't be surprised. I beginning to feel like a broken record with pathology results and updates. We're always optimistic, but lately it helps to sometimes be a little realistic.
I have 3 minutes to make my bedtime goal. It's an early morning tomorrow to try to make it back to the hospital before doctor rounds begin.
Saturday, June 5, 2010
1. When life tells you to wait a little longer, enjoy the wait.
Dr. Lee, an oncologist, made the daily morning rounds. Again the news of the day was that we're still waiting on pathology. We probed a bit about the pathology process to feel assured that although the weekend makes things slow down around the hospital, the pathologists are hard at work still trying to put a name to the small round blue cells under their microscopes. The oncologists really can't do anything until the pathologists give the cells a name. We are still optimistic about a diagnosis by Monday, but we are no longer placing bets. So we took more deep breaths and decided that we'll enjoy the beautiful view from our window, be grateful we scored the only room on the wing with a private shower, eat some candy, visit with many friends, try out video chatting, get some fresh air outside, and count our blessings that William is not sicker than he is right now.
Dr. Lloren, our amazing pediatrician, stopped by today to see William. Ryan told him what we learned about the relationship between the pathologists and oncologists and the processes going on. He had a great joke that really summed up our experience:
A pediatrician, a surgeon, and a pathologist went duck hunting. The pediatrician saw a duck fly by and said, "Is that a duck? I think it's a duck. Maybe it's a small goose." But it was too late. The bird flew off and he missed his shot. The surgeon saw a duck and said, "Is that a duck? It looks a duck, but it could be something else...awww, forget it." Bang! He killed the duck, picked it up, threw it at the pathologist and said, "What is it?" The pathologist replied, "I'll get back to you in a few days."
2.When you have throngs of dear friends to surround you in adversity, forget about loosing a few stress pounds!
We just might have our 1 year supply of snacks stored in our teeny, little hospital room. There are many smart and savvy ways to create additional storage space in your home, but what about a hospital room? Shoe boxes from boots! And we have 2! Each fits perfectly under William's hospital bed and each is loaded with snacks! Did you know grape licorice exists? And a bag of gumballs can make an 8 year old very, very happy? Thanks Kalani, Kim, and Sharlie. When the going gets tough, and it will, we'll eat! We shall not perish for lack of snacks!
3. Sometimes things are hard, but we do them anyway so we are stronger in the end.
Our goals with William today were to walk the halls or to the playroom, eat & drink, play, have fun. They're not quite as easy as they sound. His knees look wider than his thighs and his neck and shoulders are skeletal. He increased his oral fluid intake (still has IV fluids), but each meal was practically force fed to consume less than 1/4 of what was served. He made it to the playroom in the morning and managed to walk back with only the assistance of his IV stand. He loved his many visitors and found strength to talk a bit.
After dinner, we got permission to leave the floor and go outside. He complained of being too tired and his side hurt. We explained he had to get up and walk so he could get stronger and that pretty soon he wouldn't have the strength or the permission to leave his room.
We believe in life there will be a lot of hard things we will all have to do that won't be any fun and we won't want to do them, but we have to do them. Adversity is part of life's plan that helps us find and understand happiness. In the end, we will be better and stronger and more capable of understanding the love our Savior has for each of us.
William made it all the way outside and we sat on a bench for a while before heading up to bed. When he sat down exhausted, he said in his sweet, little, weak voice, "It's a beautiful day today."
It was a beautiful day. We were surrounded by many dear friends and family members today. We enjoyed the wait.
Friday, June 4, 2010
After a slow morning, William enjoyed visits from his kindergarten teacher bearing a stuffed Corduroy bear, a good friend who knows her way around hospitals and offered some good hospital wisdom, Hazel the dog, his primary teacher from church bringing a Star Wars DS game, some good buddies bringing legos and fresh fruit for mom & dad, and a visit from his cousin with a game and DVD. The visits were great and very much appreciated.
Will made some big strides today - he was able to get out of bed twice and stand up (painful, but necessary) to exercise those knobby knees that have survived on IV fluids and popsicles for the last several days. William also got to provide a wish list to the hospital staff who have a program for the kids to grant one of 3 wishes. His wish list included: the biggest space police lego set, a Spiderman DS game, and a Cleveland Indians hat (no pressure from Dad, really). By that time in the late afternoon, we were also wishing to get out of the ICU, but awaiting a room to open up back on "the floor." That wish was soon granted, and we moved back to the pediatric oncology wing, but after 6 1/2 days with our own room, this time we had roommates. That's fun in college, but not so much in the hospital. The roommates were nice, but the other patient was much older than Will and was enjoying some loud and rather violent videogames. The space in the room was also quite cramped.
The move out of the ICU seemed to perk William up a bit and he made his food wish list and placed an order for a peanut butter mood jamba juice and a cheeseburger happy meal. This was a very welcome request since he has hardly eaten this past week - Dad raced out to make it happen. In the meantime, Julie and Tricia worked on their request for getting us in a different room. Never underestimate the power of determined moms. After about 3 hrs in the roommate setting, we had a room of our own. It was outside of the isolation area where Will will need to be after chemo starts, but we jumped on it, and we're getting good at moving.
So we'll see what happens with the rest of the wishes. Mom and Dad are wishing for a speedy diagnosis (and cure!), and for us all to adjust to our new normal and to look for and appreciate the good that accompanies this not-so-fun situation. Tonight William made sure to pray for all of you out there who are praying for him. We're all in this together and we know many others are going through trials as well right now (Claire and Jamil's families are in our prayers). We read a bedtime story tonight from a book my mom and dad recently put together of family history stories - it was about my family's challenging trip moving cross country in 1977 (think broken axle in the middle of Nebraska). A good reminder that we all have had to (or will have to) overcome hurdles of some kind to get where we need to be and to become who God wants us to be.
Thursday, June 3, 2010
William is in a lot of pain, but all is completely normal and as expected. Meds are helping to keep him comfortable. He told Jennifer, a Child Life specialist and Millie's handler, that today he's "choosing not to talk". That's serious stuff for our little motor mouth. It's probably a coping mechanism and a way to just not deal with his realities. This is good and we'll respect it. The morphine has helped him sleep for much of the day and that's good. He's not a fan of his catheter, but can you blame him? He'll stay in the ICU another night for observation.
We met briefly with one of our oncologists, Dr. Yim, to provide further answers to the puzzling question of Doohickey's diagnosis.
What we learned:
1. It's not completely conclusive if Doohickey has brothers, but he appears to be trying to have offspring.
2. He has stage 4 cancer, as indicated by the fact that the bone marrow is fully involved
3. Stage 4 means the cancer has the ability to spread anywhere blood goes.
4. Stage 4 is not always as bad as it sounds, but it's not good either. For some cancers Stage 2 is harder to treat than Stage 4.
4. Constant ambiguities makes us exhausted and anxious.
5. The cancer also involves his liver and pelvis bone.
6. They assume that it is not a standard tumor, and the diagnosis may take until Monday or much longer.
The tears have mostly dried up for today, but we still can get teary at any moment. Sometimes we cry because good things happen. Today we cried for good things too.
William's friend, Zak, loaned him his DS. That DS has been another coping mechanism. He took it with him to surgery and just zoned out of everything swirling around him. This morning when he woke up, that was the first thing he asked for and it helped him not focus on his discomfort, homesickness, and fears. William doesn't want to look at his Broviac (central line in his chest) or listen to our attempts at 8 year old humor about catheters. He just zones out into the video game world. That makes me happy today. (Did I really admit that?)
My happy tears came from a very touching gesture from the Critz family. William and their son, Carson, were in the same class and on the same baseball team. Carson and his dad dropped off a package for William this afternoon. Unfortunately, William can't have visitors for now so Ryan and I met them in the hallway. Several hours later when William woke up, we asked him if he wanted to open some presents. He declined. We encouraged him to do so. With out much talking or expression, he made his way through the bag. He took out a small box and unwrapped it to find a DS. His eyes and mouth flew wide open. He didn't make much noise, (remember, he chooses not to talk today), but looked up at us with surprise and whispered, "It's a DS! Thank you, Carson and his sister!" Thank you, Courtney and The Toy Clean-up project! An excerpt from Courtney's blog reads:
"I am 13 years old....I put together The Toy Clean-up Project a couple of years ago. The Toy Clean-up Project is when I collect toys from all around and clean them up to [sell]. I have been able to give money to the St. Jude Children’s Hospital by doing this. Another way I use the money is to help the Kaiser pediatrics in Roseville, all the children get a little something. At the Kaiser Hospital, not only was I a patient there at one time, I am one of their success stories."
Courtney and Carson, you made William's day and made him happy on a not-so-happy day. Thank you!
Ryan and I cried happy tears.
Wednesday, June 2, 2010
This morning William enjoyed a walk, another playroom art project, a Harry Potter trivia game (no contest, Dad loses again), and another visit from Millie the dog. William also had a visit from Josh, a 9-yr old neighbor in the hospital, who showed him what his new broviac would look like. William passed the pop quiz from the hospital staff regarding what would be happening in his surgery, and since he wasn't able to eat breakfast or lunch before surgery, he made sure to place his dinner order for pepperoni pizza and glazed donut (good thing he isn't a heart patient).
Will was very brave going off to surgery and eased his mind by concentrating intently on a good game of MarioKart on a loaned DS (thanks Zak!) all the way until he arrived in the operating room.
Surgery went well, although it sure felt long. The surgeon informed us that:
- the tumor was confirmed as malignant
- it likely comes from the kidney, but it is not a standard kidney tumor
- it is very necrotic (growing fast, and as it expands it dies behind itself)
- the tumor is very gelatinous, described as "like applesauce" (hopefully nobody's reading this over breakfast)
- Will's left kidney is not functional
- the bone scan revealed some abnormalities in his spine and hip, which are both adjacent to the tumor
- Normally, they'd have a better idea of what type of tumor it is by now, but this appears to be a rare case, the surgeon characterized it as a "variant" of a renal tumor
So it looks like William has given these brainy oncologists a bit of a challenging assignment. We're eager to see the pathology report and diagnosis of this mystery tumor in the next couple days. He has mostly been asleep since getting out of surgery, and doesn't seem to be in pain (thanks to the morphine). He'll be in the ICU over the next day so they can constantly monitor all his vitals, and make sure his blood count and kidney function are well-behaved. Much love goes out to everyone - keep those prayers coming to unmask this dastardly doohickey.
EKG-measure heart rhythms
Echo cardiogram-establish a baseline of heart function before chemotherapy
Skeletal survey -a full body series of x-rays for a baseline of his bones (there may also be another reason for this one, but not sure/don't remember)
Bone scan- radioactive dye injection and then pics with gamma rays to see if Doohickey has any brothers. Will has names picked out, but we're hoping he's an only child! (names: whatchamacallit, discombobulated, thingamabob, whack)
Surgery will be at 1:30PM at the moment. William will be having a central line installed, and will get a biopsy of his tumor and a sample of his bone marrow. We've been bumped back from 12:30PM due to a heart operation, but pediatrics usually get first priority after emergencies so hopefully we won't be bumped again.
William is in great spirits and is only concerned about when he can eat after the surgery and the Harry Potter trivia game we are playing at the moment. Hazel, one of the service dogs is coming to visit him before the surgery. Very exciting! Child Life (the group who makes sure the kids have a fun time and helps the parents explain things appropriately) is coming to visit with a medical doll to show him what his body will look like after surgery.
It looks like we're off to the play room for an art project so I'll sign off until we have more news.
We will meet with the oncology team tomorrow and receive the preliminary results of the biopsy and discuss if further avenues need to be explored/included in our journey.
Thanks again everyone for the outpouring of support - we feel it strongly and it is holding us up. But most importantly I want everyone to know how grateful we are for incredible, supportive, loving family. My sister, Mary and her husband, Erik, and new baby, Eliza, jumped in the car Friday night to travel from the Bay Area when this all started, to be here so we wouldn't have to spend a single moment worrying about our other children while we figured out William's situation. My sister-in-law, Paige, has super powers to have dropped her entire busy schedule to come here and take care of my 4 boys and 3 of her 4 children at the same time for the rest of the week until Ryan's mother arrives on Sunday. We are grateful for such loving parents who have taught us how to love and care for one another and to not fear adversity, but to rise above and become stronger.
Tuesday, June 1, 2010
I got a camera from my Aunt, some candy from my brothers and cousins, a star wars book with
the first three episodes from my cousin Matthew. I got a card from my Dad's friend Jamil and
his son Tariq, here's what it said: "I heard your whatchamacallit got all out of a whack and
discombobulated. It's a good thing they have those thingamabobs to fix your doohickey." Yesterday my brothers and cousins and baseball friends wrote with window markers on the windows. And my coach gave me my trophy a week early - it is a glove that looks exactly like mine and it is designed to put my game ball inside. Two days ago we painted - first we painted on a heart with glitter paint, and I painted the sides but we couldn't pick it up since it was wet. Today in the playroom we did sand art, where you put some glue on paper with a swab, then you dump colored sand over it, then dump the extra sand in a bucket, then it turns out how you wanted it. A dog named Millie came over today and the nurse put a blanket on my bed and Millie climbed on to my bed so I could pet her. I also got to walk her to the playroom. I had TONS of tests today - an EKG, echo cardiogram, bone scan, and skeletal survey, and more blood samples. They were cool - I got to see all the pictures of the inside of my body. Surgery will be tomorrow at 12:30. That's it for now.
We met with another oncologist today and there was a stark difference between his conservative approach and our open and detailed discussion with the surgeon yesterday. He reminded us that all of the info we have so far is just an educated guess and we won't know anything with confidence until after the biopsy pathology. Of course, we want them to do whatever they need to do in order to get the diagnosis right.
Will continues to have high blood pressure during the day, so his meds were changed today in an effort to keep it under control. This means we're here for the long haul, but are happy to be in a place where Will is getting such great care. They're still planning on a Tuesday or Wednesday biopsy, but haven't been given a time yet. Hopefully when everyone's back to work after the long (a boy has it felt long) weekend, things will move along more normally (and maybe they'll fix the internet).
Today was also a day of visits. The visits made William's day. First he was descended upon by his 4 boisterous brothers and his 5 awesome California cousins and 4 aunts and uncles. They "decorated" his windows with window markers and crayons. He wasn't particularly perky, but he commented after the tornado of little bodies left that he really liked seeing his family. He has thrown up a few times, probably due to pressure on his stomach from the tumor, but that's just a guess. He had thrown up early in the morning before the family arrived and turned to me to say, "I think it's because I'm homesick."
We gave him a bath and he asked if he could just sit and relax. We said yes. Duh!:) His baseball team coaches and 3 teammates and their families arrived, presenting him with his baseball trophy and hanging out with lots of laughter. William was thrilled and was the happiest he's been in a couple days, laughing loudly at all the 8 year old humor. He complained of a headache from laughing so much. We call that a good thing.
Some other dear friends whose son is a good buddy with William came to bring dinner and to hang out with William. He loved it and sat in bed and played games, smiled, and talked and talked and talked. For those who know William well, he talks. A lot! And that is something he has done very little of the past few days.
We have felt many tender mercies today from even small little things people have said and done for us. We have also felt increased strength today that we truly feel has come from the many prayers offered in our behalf.
We're ready for battle. William decided that tumor isn't a very fun word so he named his tumor "Doohickey" (thanks to the inspiration Jamil, Anna & Tariq) and declared: