Thursday, September 30, 2010

Day After Surgery Update

I'm having trouble getting the hospital wireless to work. This is a good thing if this is my biggest worry. It's not, and William is doing as well as can be expected after 8 hours of surgery.

His pain meds have been increased this morning. He has an epidural instead of a magic self-serve button. This is better because it actually numbs the nerves in the abdomen rather that just the receptors in the brain. He is beginning to swell in his face, hands, and feet. This is all normal with the amount of fluids being pumped into him. He isn't talking, but is alert and makes signals with his hands. His throat is quite sore from having a breathing tube down it for 8 hours. He lost a lot of blood and had to receive 5 units during surgery and a bag of platelets. The next few days will be no fun, but we are abundantly grateful for making it to this point.

Well this is about all I can handle typing on my phone. And a Happy Bithday to a wonderful husband! We'll be partying it up at the hospital!

Wednesday, September 29, 2010


We finally got an update from the surgeon. We haven't seen him yet as they are still closing up.
It took over 7 hours, but the tumor is out. It is ALL out!!! Everything went well. He remained stable throughout the surgery, but as expected, needed blood--3 units and platelets. He lost his left kidney, but kept his spleen. They were able to remove everything that was visible, including the tumor wrapped around his aorta, vena cava, and other blood vessels. Any residual cancer cells are not visible to the naked eye! Hooray! But that's why we still have some more chemo, a stem cell transplant, and radiation left to complete.

William was predicting the tumor was green, Ryan guessed it was gray, the surgeon confirmed it was dard red-ish/purple and I refrained from asking them to save a piece for us to see.

I'll hopefully have pictures to post tomorrow.

Waiting Through Surgery

William was in great spirits this morning and simply commented about last night's festivities being fine "except the tube part wasn't fun". Oh, how I love a good anxiety medication! He sat in the playroom doing sand art up until they had his bed waiting for him in the hallway. Here is a shot of his art. It's a picture of him on the operating table with the two surgeons and the overhead lights shinning on him. I guess I'm safe in saying he is handling this all quite well. He's had enough anesthesia over the past few months from his initial tumor biopsy to several bone marrow biopsies that he has no fear as long as he knows he'll be asleep and won't feel or remember anything.

We've been waiting for about 6 hours and anticipate a call from the nurse any time now to update us. We've felt amazingly calm and have been hanging out in his empty hospital room. We just got kicked out and moved over to his room in the PICU, but it's all good and way better than a stuffy, crowded, smelly, little waiting room. I'm trying not to watch the clock or stare at my phone, but I must admit I jump every time I here it beep with incoming texts or emails. In any case, we told the doctors/nurses not to worry about us because we prefer they focus on William and get around to us when it's all over. I can't say enough how confident and peaceful we feel about their abilities and their concern for William's well being.

I think about faith quite frequently and have blogged about it on several occasions. I've felt my faith grow and change and strength through this whole process. On Monday, as we left the surgeon's office, I thought about my faith that God truly hears my prayers, knows me and my deepest desires and why, out of all the children on earth, wants my William to beat the ugly odds against him. I listened to a wonderful lesson in church a couple weeks ago about faith that deepened my understanding that he cares about each of us individually and we are each loved in ways we can't possibly understand with our finite minds. I loved this quote the instructor shared. (Thanks, Nicole).

"Do you believe that the Savior will really do for you what he has said he will do? That he can ease the sting of loneliness and enable you to deal with that haunting sense of inadequacy? That he will help you forgive? That he can fill you with optimism and hope? That he will help you resist your greatest temptation and tame your most annoying weakness? That he will respond to your deepest longing? That he is the only source of comfort, strength, direction, and peace that will not change, will not betray you, and will never let you down?" (Sheri Dew, "This Is a Test. It Is Only a Test." BYU Women's Conference. 1998).

I do believe this and I do believe in miracles at His hand. I know he will do things for others as much as he will do things for me. I can't express in words enough gratitude to my Savior and the blessings he has granted us and for all the thoughts, prayers, and fasting that has occurred in our behalf from all of you. They are powerful. We have felt our burdens lightened and peace in our souls in ways I can't describe. We have faith that all will work out fine, but it's the time frame we're still a little fuzzy on. That's where I must remember that the Lord works miracles in His own time and His timing is perfect.

Tuesday, September 28, 2010

Mama Said There'd Be Days Like This

... I just never imagined this one.

Today's plan was to settle in at the hospital, have some labs drawn, and get an NG tube (up the nose and to the stomach) to get the nasty meds down that are used to help "clean out the system." William was prepped by me as well as the Child Life specialist for the tube insertion, but was still nervous and scared. The bribe/incentive of Skittles worked a bit of magic---sort of, but it was short lived.

Once in the procedure room (his actual room needs to be a "safe" place), it took over 30 minutes trying to calm him down enough to even attempt to get the tube in. He was very upset he had to be awake for it and kept begging for anxiety medication. Yeah, I'm not sure if it's sad or funny that he's had enough procedures and meds to be requesting some powerful ones by category and name.

The tube got in. He was mad. Evidently, it hurt "one millionth millionth" more than we had promised him. After being wheeled back to his room, I was banished from the room. He wanted to be left all alone. He didn't want me or the nurse in the room. His only request was the TV remote! Ha! I was grateful for the breathing room because the stress was thick for all parties involved.

When I was allowed back in, he was still upset, but wanted to be comforted. He had a bad headache (from the screaming and crying). After some Tylenol he settled down for a bit and then something set him off and he started throwing up, including his feeding tube. The poor guy was hunched over a bucket with a tube hanging out his nose and mouth. The nurse had to come and pull out the tube and that wasn't pleasant. After some long negotiations he agreed to try to drink the awful tasting stuff (as opposed to the alternative of getting another tube), but the catch was that it had to be finished in 30 minutes. A stressful 30 minutes came and went and William failed miserably to consume even half the required amount. He became so stressed and anxious at the prospect of another tube placement that he started vomiting again and threw up everything he had just consumed. The surgeon came in worried because we were running out of time and didn't want to cause a delay in surgery. She decided to give him Versed to help his anxiety and remove any memory of the repeated attempt at an NG tube placement. However, due to a recent change in hospital policy with Versed, William had to be moved to the PICU to receive the silly drug.

Once in the PICU, William was very relieved to be getting some sedation, but was nervous that he still wouldn't be all the way asleep. William's arms and head had to be held to keep him from squirming. The surgeon attempted twice to get the tube in one nostril. Each time she tried a different type of tube, but the nature of William's nasal anatomy kept the tube from bending properly to move down the throat. The other nostril and the third attempt proved successful. We got his meds all down and although he's a bit upset and won't talk to us right now, he won't remember it in the morning.

So today was not fun. The worst moment came when William understood he was going to have to get the tube again. In tears he said, "I hate my life! Why can't I just be a normal kid?" I wanted to cry. This really made me realize how aware he is of his quality of life right now. Yet, he doesn't complain very often. On a regular basis, I vent to Ryan, my family, my friends, and this blog. Who does he vent to on a regular basis? He doesn't. His daily existence is full of restrictions, precautions, and doing hard things that are hopefully supposed to make his life better, but haven't quite yet.

William, I don't want a normal son. I want YOU because you are brave and strong and extraordinary! You are a fighter and a peacemaker and a reminder that we can all do hard things and be successful. I love you, my sweet William!

Monday, September 27, 2010

Surgery Consult

Me: "I think you're getting fatter!"
William: "I think you're getting skinnier!"
Me: "You are wise beyond your years!"

I don't know why I wore make up this morning. I should know better. I knew the tears would flow after talking to the surgeon very candidly about what surgery will entail. Ryan and I met with one of William's surgeons this morning to discuss the details of surgery, understand the expectations, and get good vibes from her.

What we learned:
  • Neuroblastoma tumor removals are not a favorite of any surgeon. They are hard and long and complicated.
  • Neuroblastoma tumors like to wrap around things, i.e., blood vessels and organs.
  • William will lose his left kidney and adrenal gland and possibly his spleen.
  • At biopsy, his tumor was described as gelatinous, like applesauce. After chemo treatment, the tumor is more cement-like and the word chiseling was used.
  • She and the other surgeon participating have both done several of these and will both be in surgery together along with the chief resident. At this point, the more the merrier---or should I say smarter, more observant, and thorough.
  • After studying the scans with her, we were reminded that the original tumor was humongous.
  • The tumor, although greatly reduced, is still roughly the size of a softball, but is not round and pretty. It fills in the nooks and crannies between and around the organs and blood vessels.
  • Surgery will be 6-8 hours long. It is their only surgery that day.
  • The incisions will incorporate his existing scar from biopsy and extend across the width of his abdomen.
Ryan and I feel very much at peace with the abilities of the surgeon. We definitely feel anxiety as any parents would, but we have faith that our loving Father in Heaven is aware of the needs and desires of William and us. We fasted for William yesterday and we know many others did too. We truly thank you.

The surgeon mentioned something to us that perhaps she didn't realize had a great impact on us. She was assuring us that although Dr. G was unable to perform this surgery due to his current medical leave, she and the other surgeons in their practice have been aware of William from the beginning, have discussed his case with Dr. G since the beginning, and read his scans previous to this surgery. Then she said it. "In fact, I woke up thinking about him this morning." This may not seem out of the ordinary, but we can't help but believe that she is being guided and inspired to know how to perform the surgery successfully. We are grateful for all the prayers and ask that the surgeons be included in your prayers as well.

On my way home from the consult, I stopped at the store and stocked up on a large quantity of stress chocolate!

Saturday, September 25, 2010

Always Learning Flexibility

This week has been full of fun and family and togetherness. I'd like to say it was all blissful, but there was plenty of crankiness along with the laughter. I suppose we wouldn't be normal if that wasn't the case.

We've just said our goodbyes to Uncle Mitch and Aunt Hilary. We're so grateful for their help around the house, yard, and with the boys. We loved having them here and wish New York wasn't so far away. We had a great time at the baseball game, went to the drive-in movies, ate plenty of ice cream, hit In 'N Out, played Wii, cheered at soccer games, and collasped with exhaustion each night (at least the adults did)!

William has been feeling great. His blood counts continue to remain good enough for surgery. When the social worker asked William on Thursday how he felt about surgery, he answered, "Kinda good and kinda sad. "

SS: "Why is that?"

W: "Good because I'll be getting rid of the tumor. Sad because I'll be losing one of my kidneys and I'll miss it since I've had it all my life!"

We also learned the results of his bone marrow biopsy. One leg is completely clean of cancer cells, but the other has a tiny, tiny amount of cells still hanging out in the marrow. I questioned how that may or may not have affected his stem cell harvest since we obviously don't want infected stem cells transplanted. They explained that cancer cells tend to attach themselves to the marrow and don't mobilize in the blood with the stem cells. I guess I need to do more research about the difference between marrow and stem cells because we've been told they're fairly synonymous. And it's sometimes frustrating when we've asked that question multiple times and this is the first time we've heard this explanation.

We've been putting into place all necessary arrangements for our family while William will be in the hospital. We know that 5-7 days after surgery, assuming his pain is under control, his blood counts remain good, and all appropriate body functions have kicked back in to good working order, his 6th round of chem will begin. Yesterday, we were reminded (yet again) how flexible we must be in this process. We received a call from the surgeon's office to inform us that the surgeon is now on an extended medical leave. Instead, two of his partners will be performing the surgery and will be able to do it during the previously designated time slot, but they want William admitted to the hospital for testing on Tuesday morning instead of Wednesday morning. We had planned to have outpatient lab work on Tuesday and admittance on Wednesday. Now we have an additional 24 hours in the hospital. Ugh.

I've had mixed feelings about getting our surgeon changed because we felt Dr. G was really good, but we obviously don't want him performing surgery if he has medical needs of his own that could affect his ability. I think we've felt adequate peace that the surgery will go as planned, and trust that our oncologists associate with good pediatric surgeons and that Dr. G has very capable partners, but we'll always feel anxiety with any surgery. Who wouldn't? We also have strong faith that God is aware of our prayers, desires, and needs.

Tuesday, September 21, 2010

Surgery is Scheduled

The stem cell harvest was the first big milestone. (Other than how we feel after each chemo cycle is completed.) Now we are about to tackle the surgery milestone. We've waited for 4 months to get to this point and it feels exciting and scary to finally make it this far.

Surgery will happen on Wednesday, September 28th, at 11 AM, here in Sacramento (not S.F. yet). It is scheduled to last 6 hours. I have a lump in my throat and tears in my eyes as I try to digest the fact that I should be happy that my son will be parting ways with Doohickey. It's scary. I know this is part of what we've been praying for, but I'm nervous. I try not to let William see my nerves, because he is eight. He doesn't have any fear of these steps he has to take. He whispered in my ear Friday night, "Aren't you glad I'm not one of the kids who dies from cancer?" "Yes, I'm so glad!" We've never talked about that with him that it was even a possibility, but he's smart and he's figured out that that happens to some children.

William will still have another round of chemo about a week or so after surgery. We'll wait for him to fully recover (about 3 weeks) and then we're off to San Francisco for about a month where he'll receive a round of high dose chemotherapy to kill all existing stem cells/bone marrow. 72 hours after the chemo, the transplant will occur and he will be in strict isolation while his body works to regenerate his bone marrow and immune system. When we return home, William begins radiation. But now I'm getting way ahead of myself.

Ryan's brother, Mitch, arrived last night from New York. His wife, Hilary, will join us on Wednesday. We are so happy they are here to help even though surgery will happen just after they leave. We are so happy because we will all get to be together while William is happy and full of energy. Family fun is the plan for the week.

We're off to Oakland now to catch an A's game tonight!

Friday, September 17, 2010

Smiles for Doohickey

A smile. All it took was a smile from the doctor to feel the load of our burdens lightened when Ryan and I met with Dr. Hsu to go over the latest CT scan results of Doohickey (tumor). It has shrunk significantly over the course of William's treatment---enough for the doctor to admit he was very pleased (he smiled) and not just admitting it was adequate or acceptable, but actually more than realistically anticipated. I wanted to burst into tears and savor the moment, but we quickly continued asking questions regarding ongoing treatments, time tables, surgery expectations and details, etc. The realization of this wonderful answer to prayers has come in periodic bursts throughout the past 24 hours.

Estimated size at diagnosis (June): 16cm x 16cm x 13cm
Estimated after 2 rounds of chemo (July): 10cm x 13cm
Estimated after 5 rounds of chemo (Sept): 4cm x 5cm

William's immune system is recovering and his ANC is on the rise, but he needed blood and platelets yesterday so we spent a long day at the hospital and returned home around 9 PM. I had moments while sitting in the hospital room where I got frustrated that the transfusions were taking so long due to a few minor setbacks, but then realized, "We just received the best news since this journey started. I can handle a transfusion taking a few extra hours." It's hard sometimes to take the time and stop and just reflect on the blessings we receive and the good things in our lives. I am grateful that the tumor is responding well. I am grateful that although William's weight is a constant concern, he has tolerated his chemo cycles well. He hasn't been admitted to the PICU, had uncontrollable vomiting and nausea, developed infections in his Broviac, his brothers remain healthy....

It's hard literally living day by day sometimes and not knowing what tomorrow will bring. We still don't know anymore about when surgery will happen other than it will happen in the next week or two. The stress levels of Ryan and I hit the fan this afternoon--both for different reasons and from different stressors and we had to take a step back and realign our priorities.

William got the approval from the doctor to go camping tonight with our church. Ryan was planning on taking the other boys and William was just hoping his blood counts were good enough to go. (I was hoping they were still low so I could stay home with him!) Camping with 5 little boys is near the top of my list of what causes me stress. I do not enjoy it. I do not enjoy the preparation and clean up it involves. I should love it. My husband and sons love it. I do not. Put me in a nice room by the beach and that is where you'll find a happy camper. I think it mostly stems from a lack of cooperation and help that the ages of my children currently provide for such an undertaking. My sleep is still too sacred! I remain optimistic that I will find more joy in it one day. Just not today.

Because I was so stressed over camping and a few other things going on, I broke down in tears. Ryan is way overly stressed at work right now and hates trying to juggle it with our family. He does an amazing job and I love how hard he works and tries to find balance. I know, and the boys know, that we are his number one priority. He was on the verge of tears, but I beat him to it and we don't cry together. One cries and the other comforts and then we can switch. That way we keep one semi-rational person in the situation! Thankfully, in his rational state, he announced, "Let's skip the camping part and just drive up there for dinner and the campfire and then come home!" He promised to set up a tent in our backyard at some later date. He understood that we all needed to get out of the house and the boys were already looking forward to being in the mountains, but the tent and all the junk could be left at home. Brilliant! I'm embarrassed it was so obvious. My brain was so foggy that I announced "I'm moving to Australia."

We threw jackets and a bag of goldfish crackers in the car and William's mini-marshmellow shooter that his friends made for him at cub scout camp (he was anxious to use it). They had a glorious time and came home filthy and tired. I was planning on waking them and bathing them (see, still not rational), but Lisa talked some sense into me and said, "It's still camping. Let them go to bed dirty and you'll still have loads of laundry, but you'll get clean sheets out of it!" Her mother is my laundry fairy and picks it up every few days and returns it so beautifully folded and ironed! Yes, ironed! I gave up ironing unless absolutely necessary and I've been known to use my hair flat iron on my collar and front button placket and bottom edges. It works in a pinch and you can wear it while you do it!

I'm grateful for blessings, good news, smiling doctors, reality checks, cleaning fairies, friends and family and strangers who have touched our lives and had their prayers answered on our behalf. Thank you! Thank you!

Tuesday, September 14, 2010

Clorox and Kidneys and a Few Things in Between

William is neutropenic. Big star on your forehead if you remember that vocabulary word. I am on constant hand washing alert, especially since it appears that two boys have the sniffles. Can hand washing truly become habit forming with children? I have my doubts. But I can hope, right? My twins kind of caught on today by entering the car after school and automatically dispensing hand sanitizer without being asked. It was great! Then they kept going and made sure all germs were killed off their belly and chest too. The bottle was emptied. I just love school germs! (please read very sarcastically). I am also very thankful for Clorox wipes. Love them! (not read sarcastically). I have no idea how much protection they provide, but my peace of mind is worth it! I'm hoping William has allergies. He's sniffling a bit, but hasn't had a fever which would indicate his body is fighting bacteria or a virus. Also, according to William's latest blood counts, he will probably be getting a blood transfusion on Thursday when we report back to the clinic for blood counts again. Yay---because that will hopefully help him recover and prepare for surgery. Boo---because that means a long day at the hospital. (almost forgot--1.5 lb. weight gain since last Thursday. Three cheers, yelps, screams, whatever! Hooray!)

William had his CT scan today. I wish the results were instantaneous, but how else would I develop the virtue of patience? From this scan, we hope to have a more accurate idea of how the tumor has responded to the chemo. The obvious hope is that it is still shrinking. I know I'm a bit obsessively consumed with my son's weight gain, but it made my heart happy as he lay on the CT scanner and I could see his ribs jut out and then a sharp fall in the belly area with no tumor bulge! Today I was happy with a scrawny son! Ryan and I will sit down with the doctors on Thursday to go over the scan results and the progress made from the previous scans. We will also begin to discuss surgery in more concrete and definite terms (hopefully). We'd love to set a date for surgery too, but I think that is a far-fetched aspiration since surgery is at least a week or so away. Oh, that we could actually know something definite more than a week in advance.

William had a renal scan a few weeks ago to check out his current kidney function. This is, in part, due to the aggressive nature of his chemo that can have adverse effects on the kidneys and because his left kidney is involved with the primary tumor mass. The tumor surrounds the renal vessels that feed the kidneys and at diagnosis that kidney had no function. As of the recent scan results, his right kidney (good one) is carrying most of the load, but the left kidney (bad one) seems to have regained some function. It is small, but it is something. It is unclear if he will get to keep it, but that will be the surgeon's call during surgery as he assesses the complexity of the removal of the primary tumor mass. I don't really care if he gets to keep the kidney or not at this point, I am just grateful for the miracle that the regained function signifies the tumor has shrunk.

We feel very blessed and grateful for all your prayers and grateful to a Heavenly Father who hears and answers those prayers.

Sunday, September 12, 2010

Life as a DVD Player

Why can't life just be like a DVD player? Pause in the moments of pure joy, rewind the decadent desserts over and over again, fast forward through the ugly hair days, and just eject when we're ready to switch it up!

Our family is not the only one going through trials and heartache right now. Some days it seems like there are extra doses of challenges being handed out to everyone, but other times, I think I'm just a bit hyper-sensitive right now to the burdens others have too. This is good--the awareness part, not the extra challenges. (Except I could then argue about the good that comes when we overcome our challenges....) I have started to look at people differently and wonder what mountains they're climbing, heartaches they're feeling, hardships they're enduring. Trials can never be compared because we all have individual circumstances, but I'm grateful for the ones I have because I have felt comfort and peace with things I never thought I could handle.

But, right now, I think it stinks and it's hard for everybody and I wish we all had a fast forward button on life sometimes!

A while ago, someone anonymously left a gift for me on the doorstep. It was a necklace with a silver disc that reads, "Be Still." She included a card and wrote of a friend who had a child with a serious illness and every time things got really tough and she thought she couldn't take anymore, the thought would come to her "Be Still" and she would be comforted to know all is in God's hands and He loves us and will help us. I wear this necklace often and it helps me with my perspective and to also remind me that time is a gift and not a burden. (Although some nights bedtime cannot come fast enough!) Thank you, "friend".

I spend plenty of time wishing away this trial. It's no fun and it takes it's toll on our family in many ways, but I wouldn't trade the faith that's been strengthened, the patience that's been tried, the understanding that's been broadened, the testimony that's been deepened, or the love that's increased. Sometimes the tracking is off and the big picture is a little fuzzy, but with a few adjustments, a little common sense, a bang or two to the side, the picture comes into focus and I can sit back and breathe. Just breathe.

Thursday, September 9, 2010

Singing in the Car

Lisa informed me this morning that I trumped her posting. You know, the one I hinted for her to post. I had no idea--I was that tired when I posted and didn't even look at the blog when published. Please scroll down and see our lovely children and her lovely chickens.

I was also so tired last night that I slept through my 3 AM alarm to give William his Zofran. (He got it at 5 AM). Evidently, Ryan and William were so tired that they slept through it too! And when I peeled myself out of bed this morning, I noticed a big goose egg lump and bruise on Soren's face---smack dab between his eyebrows. I asked Ryan how that got there and he had no idea, but tried to remind me of when Soren was crying in the hallway during the night. Huh? Ryan brought him into our room, gave him a drink and then put him back in bed. No lights were turned on so Ryan didn't see the probable reason for the crying. I have absolutely no recollection of the entire event. And that's coming from a light sleeper. And no, it was all exhaustion, no lovely helping pill.

William's ANC is over 15,000. Immune system is intact for a few days. Thank you Neulasta shot! That's the shot he gets after each chemo cycle to help boost his immune system and is one of the many reasons we are thankful for health insurance--the single little shot costs $4,000!!! (I think I just gagged.)

We are back on the weight gaining wagon. Correction. William is back on the weight gaining wagon. We programmed my nifty new phone (it's so smart) to sound an alarm each hour to remind him to eat something--no matter how small. So I apologize if the constant beeping sound I now make is annoying. It's just a phase until my new thinking cap arrives. Estimated date of delivery is unknown due to a huge backorder status.

We stopped at Jamba Juice on our way home and William was excited to learn that the Peanut Butter Moo'd is the highest calorie item on the menu! Way to go, Will! We sipped Jamba Juices, cranked up William's new favorite song, "Hey, Soul Sister" by Train, and put it on repeat all the way home. Without my knowledge, William decided to record himself singing on the way home. It made me smile and laugh. We all need a little more smiles and laughter. Enjoy! (I smile like only a mother can each time I watch it!)

Wednesday, September 8, 2010

Hoping for an Uneventful Sleep

Continuing the theme of lack of sleep in recent blogs...

The vomit caught up with William last night/morning at 4 AM. I set my alarm for 4 AM and woke up and gave him his nausea meds. As soon as he swallowed his pill he got his worried look he gets when he doesn't feel right. I hate that look. I see it all too often. He grabbed is bucket and started throwing up. I held him and cleaned him up. A half hour later we tried again to get his meds down. Same response. I hate it when my kids are sick and lay limp in my arms out of exhaustion. He finally settled down and I got him cleaned up again and he said he felt good enough to go back to sleep. I decided to wait on trying to get the pill down, but was nervous the nausea would get ahead of him and I'd be unable to get the pill down later. I lay in bed next to him for the next hour and a half and tried to sleep, but had to check on him every time I heard him move in fear he was reaching for the bucket again. We tried again at 7 AM and were successful. The rest of the day has been a steady improvement with the help of the additional nausea drugs, but we've also stuck with mild foods like toast and water. At least there were calories involved. (I'm getting a little obsessive with food and calories--and not the way normal people are!)

Today's weather was gorgeous and such a teaser for Fall! After the boys all came home from school and William's energy level was improving, he came downstairs and said, "It's so nice outside. I wish I could go outside and play, but I'm too tired and I'd be so cold." He's very sensitive to cold--it's a hair thing! I told him I'd put a bunch of blankets and pillows in the hammock and he could go lie in it. He loved it and stayed there for about an hour. I was jealous! (I was stuck on snack and homework patrol.)

William sees the doctor at the clinic again tomorrow for the latest blood counts. We hope it's a quick in and out visit, but we keep our expectations low and stay prepared to stay longer if he needs a blood transfusion. Hospital admittance is not an option we want to entertain yet. (We haven't recovered from the latest visit yet!)

So here's to the modern miracle of nausea medications and a few good hours of restful sleep.

A Liitle Game

Hi blog readers, friend Lisa here tonight. I remember when I was young and I would love those little picture games in the kid magazines where you had to figure out what was wrong. There was always a light post with the middle section missing! So here is your picture for tonight:

What is wrong:
  • No young boy should be bald- unless his mother panicked and thought he had lice (oops!).
  • My .17 acre (yes, .17) yard shouldn't include chickens.

What's right:

  • Two boys just hanging out and talking about chickens and video games (I tried to give them space, and I only took 10 photos).
  • A visit from Will prompted an emergency long-overdue bathroom cleaning!

"Thanks for the visit, Murdock boys!" - Whitey and Boo Boo Chicken

Tuesday, September 7, 2010

Taking Naps

Each round of chemo takes its toll on our sweet William's body. And each time makes it harder to recover. He seems more frail to me when he is curled up in bed too. His eyebrows are thinning and he is loosing his eyelashes now and has about 5 bottom lashes left on each eye. Today he stayed in bed until dinner time. (Ahh, the life.) He napped off and on most of the day and when he was awake, he had little energy to get up and felt nauseous. We're are keeping ahead of the nausea so far, but the pink bucket is always by his side. It felt good to see him come downstairs on his own and join us for dinner. Dinner also conveniently coincided with a dose of Zofran!

This evening, he also managed a visit to James' house to see the 2 new pet chickens that took up residence in his back yard this weekend. Maybe Lisa will post a picture of them just sitting in front of the coop talking...hint, hint, hint!

The younger boys are becoming more aware of William's illness. We openly discuss his cancer with them, but they are too young to really understand cancer and anticipate its effect on our family. They ask if he's in the hospital, when he will be home, and when he is going back. Soren, our youngest, asks daily if William is home and if we are leaving. They want to go see him wherever he is and want us to stay home. When they make sweet, little comments about missing us or wanting us, it makes it much easier to let things slide off our to do list and just take them in our arms and hold them and play with them. Unfortunately, they are active little boys and we are exhausted parents and we wish they would ask to take naps with us! (Oh, in a perfect world....but then I wouldn't be so tired.)

Monday, September 6, 2010

Brief Rundown

  • very tired
  • battling nausea
  • finally arrived home around 7 pm
Clark, Cameron, Nathan, Soren
  • glad to have William home
  • loved going out for donuts for breakfast
  • enjoyed the evening swimming at the neighbors home
Ryan and Julie
  • very tired
  • so glad to all be home together for a bit
  • very tired (deserves being listed twice!)

Saturday, September 4, 2010

Outputs, Pampering, and Pure Joy

If I was to make a list of things I considered pure joy, it would have things like swiss chocolate, long foot rubs, naps on the beach, my family all happy and healthy in our home. I'm sure my list is vastly different than any 8 year old boy. Pure joy is not what William would use to describe the way this day started, but all is finally calm and happy.

Nausea and the need to poop--I know, it sound graphic, but I'm being honest here--have been the cause of much misery today. William has managed to steer clear of vomiting, but along with his scheduled array of nausea medication doses, he had the Benedryl/Reglan combo and Ativan slipped in between doses to stave off the nausea. His appetite is next to nothing, but that's expected with this round of chemo so I'm trying not to stress and just let him relax.

Ryan spent the night and morning with him and had hopes of working from the hospital, but because William was up every 1-2 hours to pee all night, both got little sleep and the morning was spent trying to alleviate the discomfort William was experiencing. Thankfully, my sister, Mary, was still with us so I quickly packed up and headed to the hospital after lunch so Ryan could sneak to the office and get some work done for a few hours.

William was a little loopy when I arrived due to the Ativan, but was much more pleasant than yesterday. I climbed into bed with him and held him for a while. Later, he finally recorded the output that was causing so much discomfort and the world got a little better! Truly. We were all happier.

I recently entered the world of smartphones and apps. Wow! That's all I can say to sum up the amazing conveniences I can live without, but no longer want to. My friend introduced me to Pandora yesterday (stop laughing all you techies out there). It's a free app that plays customized radio stations from the internet. I was trying to think of something fun and relaxing for William to help relieve the stress of the past few days, (it started with me laying off trying to make him eat at all today) so I suggested he take a bath and sit and soak (he loves that--especially when he's at home and he gets the tub without any brothers!) He doesn't get chemo during the day so he was able to be disconnected from his I.V. pole that was just giving him fluids. Hurray! It feels weird being able to walk down the hall unhooked to something. We got all set up in the tub and I revealed my brilliant plan that brought smiles to my sweet William. I brought out my phone, opened Pandora, created a radio station and he sat in the tub and relaxed, listening to some of his favorite music. He was happy and chatty and all smiles. I trimmed his fingernails, lathered him up with lotion, dressed him in fresh PJs, and changed his dressing and caps on his broviac. I imagine he felt as good as I do when I finally have a chance to shower AND shave my legs!!! I loved just pampering him and seeing him so perky and pleasant. Even the nurses had a good laugh at his 180 degree change in mood.

A bath is great, even for an 8 year old boy sometimes. But pure joy came for him when I finally downloaded Angry Birds on my phone. (It was released for the Droid yesterday!) I'll let you guess what he spent the evening doing....

Friday, September 3, 2010

And . . . The Downside

I blew it yesterday. William was scheduled to have a bone marrow biopsy again before starting chemo to see if his bone marrow was still clear of cancer cells. He is put under anesthesia for the 10 minuted procedure. This means no food or drink after midnight. Thursday morning, I was so focused on his eating habits (as usual) and anxious to see what his weight was at the clinic, I spaced it and fed him toast (loaded with butter and jam) and a glass of milk (whole, duh) while driving to the clinic. Halfway there, I realized my mistake. It was an honest mistake and completely mine. The doctors assured me it was no big deal and they would do another one in a few weeks after he recovers from this cycle. But I don't like making mistakes when it comes to my son's medical care.

Chemo started at 6 PM and I made sure the nurses would be administering his Zofran for nausea around the clock to stay ahead of the nausea and so William wouldn't wake up in the morning and start vomiting. This was missed last time and it wasn't pleasant for all parties. Plus, he won't eat anything again that he knows he already threw up. I don't blame him, but the list of foods he's willing to eat at the hospital is very, very short: Orange Gatorade, orange sherbet, and Cheetos (orange, of course)!

So far so good.

Except for the mood.

William is tolerating the chemo and eating, but the appetite has definitely decreased. He was pretty grumpy today---especially when I made him walk down the hall and back. How horrible I am to make him get out of bed once during the day? He doesn't want to talk much and enjoys zoning out with his video games. This is another squiggly line we walk trying to be sympathetic to all he is going through and how rough the chemo is on his body while still maintaining limits and boundaries for behavior, manners, etc.

It's no fun walking into the hospital with a happy, cheerful boy, settling in, and then waking up in the morning and he feels so sick that he's lost any twinkle in his eye. We'll be pulling for a visit from one of the dogs tomorrow! They make the world feel good.

This is my night at home to get some good rest before I'm back on hospital duty tomorrow night so I better sign off. Do I carry the 6 year old asleep in my bed back to his own or let him stay to have coveted snuggle time and risk a foot to the stomach at 3 AM?

Thursday, September 2, 2010

The Upside of Cancer

William was admitted to the hospital today for round 5 of chemo, (the very nauseating cocktail). William started to cry in the car ride to the hospital when he asked what his chemo regimen was going to be this time. He's only had this cocktail once before and it left quite an impression. But hopefully the preceding days to this hospital stay will make it a bit more bearable.

"This is the best day of my life since I got cancer!" exclaimed William as we walked up the boat ramp after an evening of boating, tubing, and water skiing with friends.

It was one of those evenings when we didn't feel like we were the family with so many restrictions. William is supposed to stay out of lakes, oceans, rivers, etc., because of germs/bacteria. But his immune system is functioning this week and the doctor gave his okay as long as he didn't get his Broviac wet. We planned to have William stay in the boat and he was content with his reality, but the lure of the tube was too much for this boy. We often walk a squiggly line between restrictions and letting him just be a regular 8 year old boy. It wasn't a hard decision to give in and let us all make fun memories. The boys were all full of laughter and excitement to be in a boat and pulled on a tube. Ryan and I even managed to do some skiing and feel young again--until we woke up in the morning!
Faster! Faster!

Trying to decide if it's all worth the hype!

It's worth it! (at 5 mph)

My camera flirt!

I couldn't resist posting this one!

Beautiful evening.
Thank you for the happy memory, Getz family!