Saturday, October 30, 2010
I hate being able to measure the time I've seen my husband in the past four days in minutes (especially since he's not out of town). I hate that the time we've actually talked is filled with stress, worry, scheduling, and a sense of inadequacy. I hate having to meet up at a gas station to trade the boys and rush off to the next commitment just in the effort to maintain some warped sense of normalcy. I hate having my children cry because one of us can't be at their soccer game. I hate over-analyzing every word the doctor says. I hate being in the quad room with a screaming toddler at 5 AM. I hate suddenly breaking down in tears while driving down the street. I hate trying to hold the tears back in front of my children. I hate the worry on my children faces when I do cry in front of them. I hate hospital pillows. I hate waiting for the doctor to call and run to the phone just to hear a political recording. I hate my children's fascination with the porta-potties at their soccer games. I hate lima beans.
Whew. I feel a little better. I sometimes feel guilty feeling this way because trials aren't meant to be compared and our family is truly blessed in many, many ways. I'm really not complaining so much as venting the hardship, stating the reality. Perhaps there is not much difference, but I am truly grateful for this refining process, albeit fairly painful at times. I don't want to forget some of the feelings I've felt so that I can see the increased strength later on down the road. And hopefully others can relate and know that what they are feeling is normal. Of course, I'm making a huge assumption I'm acting normal. At the end of this journey, I want to be able to render more meaningful service as a result of being the recipient of so much. I want to ease the burdens that countless people have eased for us. I want to be able to sleep through the night.
I just learned Ryan got William switched to a new room with no roommate, the boys are excited to take William some of their candy, I'm going to sleep in my own bed and with my own pillow, and we're taking another deep breath.
Friday, October 29, 2010
Is it crazy to say we are so glad to be in the hospital today? It was a fantastic day!
First, this round of chemo cocktail seems to have milder side effects than previous cocktails. William has eaten some food (rare for him in the hospital) and been in good spirits (also rare in the hospital). We're hoping this continues.
The pediatric floor has been buzzing with excitement. The playroom was full of costumes for children to borrow, children were beaming with Halloween excitement, and cameras were snapping away at children all dressed up with somewhere to go. At 1 PM (it felt like forever watching the clock), all the children healthy enough to leave their rooms got to go around the hospital to various offices and nurses stations. We went trick-or-treating to the basement and all over the first floor in parts of the hospital most people never see. It was so much fun! William described it as a spooky Christmas. No candy was given out due to many diet restrictions for these kids so toys and trinkets were handed out. Have I mentioned how happy these children were? The staff loved seeing the kids and chatting with them too. I think I loved it so much because it made my heart so happy to see all these kids so happy. William, Spencer, and William were like the three little amigos. So fun to listen to them discuss costumes and Halloween. And a huge thank you to Aidan Z. (and his mom) for letting William borrow the Harry Potter Quidditch robe and broom at the last minute! And thanks to William K.'s mom for finding the glasses.
Thursday, October 28, 2010
As parents, the emotional roller coaster continues. On Monday, Dr. Hsu informed us that more chemo was likely and more chemo means a minimum 2 more rounds, not just 1. Today in the clinic, Dr. Lee said William will be reevaluated after this round, but didn't clarify how many chemo rounds were expected. I neglected to ask for clarification and eagerly mistook it as one additional round being possible. Reevaluation (bone marrow biopsy) always occurs after each round with William. After we were admitted, Dr. Yim stopped by the room and said he suspects William to need 4 more rounds based on previous patient experience (obviously his educated opinion at this point. I think I may be bald too by the time this is over! I keep repeating in my head, "Every child is different. Every case is different. And there is no reason why William can't be the exception. Miracles, big and small, happen."
So we continue our juggling act and try to enjoy something each day.
Here's what made Wednesday a good day!
For instance: helicopters at school.
I heard the helicopters Wednesday morning and thought, "Oh yeah, that's today. The boys will have lots to talk about this afternoon. Wait, William's healthy and home and we have about an hour before we have other commitments." We quickly piled in the car and headed to school. It was awesome! It was quite the event: 2 helicopters, undercover officer and vehicle, police horses, canine unit, narcotics officer and truck, etc. William loved seeing his friends too and his friends loved seeing him. I think it was great for his friends to see him on such a healthy day and be reassured that he's still the same William. Some of them begged him to take his hat off, but William didn't give into the peer pressure! :) Sometimes he is self-conscious about his head and sometimes he not.
Here's to good days!
Wednesday, October 27, 2010
Other noteworthy news:
- The doctor's office called today with the updated chemo schedule.
- The stem cell transplant will be delayed.
- William heads to the hospital tomorrow morning to begin round 7.
- It's a 5 day infusion process which means he'll hopefully be discharged on day 6, next Wednesday.
- Tears were shed over being stuck in the hospital on Halloween, but we'll make memories, right?
Tuesday, October 26, 2010
Monday, October 25, 2010
We spent parts of two days at the Aquarium, played in tide pools, went out for ice cream, ate delicious clam chowder, walked and walked, and just enjoyed escaping from our everyday routine. We finished off the trip by spending Sunday in the Bay Area visiting my brother and sister and their families. The boys were beyond excited to see and play with their cousins and it was nice for Ryan and I to have a few scattered moments to visit with the adults.
Thank you to the cleaning fairies that cleaned the house when we left! I so appreciated walking into a clean home late last night. And it lightened my load today since we were back at the doctor's office this morning and thrust back into unpredictability of our lives.
The myriad of test results from last week came back and were the focus of today's office visit. It's been an emotional day and I have to keep reminding myself that William is still making progress, even if it's not the way it was supposed to neatly play out. I feel drained and tired, so I'll be brief.
The bottom line is there are still cancer cells in the bone marrow of his left hip (estimated at 5%). Patients typically don't proceed to stem cell transplant until the bone marrow is clean. It is up to the transplant team at UCSF to make the final call as to whether we proceed to transplant or remain here and receive additional chemo. I don't know what I was expecting to hear from the doctors today. I was prepared and assuming William would receive additional chemo before proceeding. I think what caught me off guard was assuming one additional round would be needed and learning chemo cycles are administered in pairs and he would likely need two more rounds before reassessing his bone marrow.
I started the math:
2 rounds=6 weeks, minimum
1-2 weeks as a cushion for likely prolonged recovery
2+ weeks after that for likely scheduling and planning for transplant.
=some time in January for transplant. (We had hoped for November or December)
+ radiation after that
Today is day 21: the day he usually starts the next round. We're not starting yet. We have all these things spread out in front of us and we have no idea what happens next or when. That's why I cried today. We now sit and wait for the phone to ring to tell us what to do. If more chemo is the answer, do we start the next day or next week? What about the timing with Halloween, William's birthday. . . . Some things don't matter and birthdays and holidays can be celebrated any day we choose, but we can't even do that yet. All these numbers and calculations and we can't do anything about anything. We just wait and live today, preparing for tomorrow.
Tomorrow will be better after a good night's rest and partying it up with a 4 year old all day long!
Friday, October 22, 2010
On Thursday afternoon, William finally headed home after a bone marrow biopsy and aspirate, full body bone scan, and audio-gram. The audio-gram showed moderate hearing loss in the high pitched tones. For instance, if there were high pitched birds chirping softly, he wouldn't hear it. So it's not bad, but a parent never wants to see their child suffer any sort of ill side effects. They will monitor him monthly or so and there is always a possibility it may not be permanent. On the bright side, maybe he will be a better father because he won't be able to hear the high pitched whining of his children! We will hopefully find out the rest of the test results on Monday when we see the doctors again.
Now we're enjoying some much needed family time since this weekend may be one of the few weekends we have left all together as a family for the next several months. And even after the transplant occurs, William won't be allowed out in crowds for 3-6 months.
Tuesday, October 19, 2010
Other news: I have an amazing sister who is fighting the fires at home. Thanks, Mary. And thanks to her wonderful husband, Erik, for playing bachelor for an unspecified length of time. Also, Clark lost a tooth! Yay! Ryan and I didn't even know one was loose. How's that for attentive parenting? (Dear Tooth Fairy, please remember!)
Oh, and remember that quad room we were stuck in last time? I actually try not to think about it. We may be stuck at the hospital again, but at least we're not sharing a room (for the moment).
Monday, October 18, 2010
I brought the boys to the hospital Sunday afternoon to visit and to switch out hospital duty with Ryan. It was crazy and loud and somehow the boys are always suddenly hungry when we get here. They raid the refrigerator of soda, juice, popsicles, ice cream cups, saltines, and graham crackers. I suppose I'd feel more guilty if William ate more and if the boys actually visited often. Both seldom happen. After the boys all left and I settled in, I realized I forgot my Harry Potter book (I'm trying to catch up with William), my hair brush (not my fault---little helpers played in my bag), and my laptop. Gasp. That's practically an appendage. However, the weaning process is going well since the introduction of my new phone into the family. But it's nice to be reunited nonetheless.
William is still in the hospital and it looks like Tuesday or Wednesday he should head home. His immune system has not started to recover: ANC still 0. I went back through all our lab results over the past 4 1/2 months and double checked the recovery trends. I was sure he was off-trend, but discovered he typically recovers on day 9 or 10. Today is day 9, so he's still within the norm. A day or two extra, given he's completed 6 rounds, would not be too unexpected. I'm such a nerd! Fortunately, we're getting several of the scheduled scans out of the way while we're still inpatient status.
The mouth sores seem to be on the mend as he's been eating a bit more. But I don't want to exaggerate here, it's more like grazing and it makes me hungry just agonizing over the speed and quantity of his eating. He still needs to swish with a numbing cocktail and have a dose of morphine each time he eats. He also seems to be on the mend because he's chatting up a storm. (Our day nurse received quite the explanation and demonstration of Angry Birds!) Another sign of healing is William's eyelashes and eyebrows. If you look closely, he has eyelash and eyebrow stubble! It's the simple milestones we relish!
Ryan and I escaped Saturday night for a very, very needed date. A HUGE thank you to two fun boys from church and their mother for having a game night with William at the hospital and a great neighbor girl who was willing at the last minute to watch the other boys so Ryan and I could go out to dinner and triple our caloric intake for the day! It was a much needed ending to a stressful day and after a good cathartic cry.
The boys all seem to be doing well considering what their world has become. Sometimes it seems like the younger ones have no idea that our lives have been turned upside down. That's our general objective. We want to protect and nurture, while understanding they are smart and perceptive. It is obvious they feel the strains too sometimes. The other night while saying family prayers, William said, "Please bless that our life won't be so hard anymore." My eyes welled up with tears and Ryan and I stole a glance at each other; the kind of glance that pulls at the heart and makes you take a deep breath and push pause while you hurry and take them in your arms.
I am curious to see the ways our family is strengthened through this journey. It may take years for me to be able to go back and read what I have written. I skimmed over some older entries recently and it was too hard to revisit some of the events and emotions. One day I hope my children will read this journal and find comfort, understanding, peace, faith, guidance, counsel, patience, hope, acceptance, kindness, answers . . . and above all, a knowledge of the love their parents and Heavenly Father have for each of them. I love you, William. I love you, Clark. I love you, Cameron. I love you, Nathan. I love you, Soren.
Friday, October 15, 2010
Gearing up for a week of tests and appointments:
1 clinic visit (the other one will be canceled due to hospital stay)
1 surgery follow-up
1 CT scan
1 MIBG scan (specific to see neuroblastoma cells)
1 GFR (kidney scan)
1 Bone scan
1 Bone marrow biopsy
And as our life of flexibility goes, I only know on which day 2 items will occur and the times are yet to be set. But everything should happen this next week.
These tests/procedures will give the oncologists a more accurate map of William's progress. There is a chance William will have an additional round of chemo (round 7) before proceeding to the stem cell transplant if his bone marrow is not clear of cancer cells. His last biopsy, before surgery and round 6, showed one leg clean and one leg with a tiny amount of cells still remaining. His bone marrow must be completely clean for transplant. If he needs another round of chemo, it will set us back another month or so.
Wednesday, October 13, 2010
Germ high alert is the theme of this week. William's ANC should hit zero soon if it hasn't already. This reflects his immune system's ability to fight off any germs and he is at high risk for infection. If he continues with his trend of previous cycles, tomorrow afternoon he should spike a fever and then be immediately admitted to the hospital for a minimum 48 hours stay. However, he is doing great and I'm hopeful he can break trend: hasn't thrown up, no mouth sores yet, no bone pain. He's quite a bit more tired than usual (okay, we'll give him one side effect), and will probably be due for another blood transfusion by this weekend. We couldn't let the nurses miss us too much!
I spent all day Monday cleaning, sanitizing, and organizing after a two week absence from my daily to do lists. I must admit, I got a little carried away and did some deeper cleaning that perhaps wasn't needful, but this is a coping mechanism of mine. It could always be worse.... Tuesday I spent recovering. And today I spent cleaning and cycling rugs and towels through the laundry. This was not on the planned agenda.
I'm not sure where I went wrong, but somehow my boys have an incredible fascination with a flushing toilet. Unfortunately it's not when and what they should be flushing. I started my morning off pulling, yet another, toilet off the floor to snake it from the bottom up, hoping to find the clogging culprit. This makes toilet removal #4 in the past year. Numbers 1-3 were all within a 6 month period. Pulling a toilet off the floor is not my first line of defense. I plunge and snake and plunge and snake and let my frustration boil for a bit. It's gross and nasty and makes me have greater love for the plumbers out there, but I'm not willing to pay one . . . yet. After a few additional snakes and tilts of the toilet, Ryan pulled out a small plastic box from a travel sized dice rolling type game. Arggg! I installed a new wax ring and bolts and got the toilet back on and then began the cleaning and sanitizing. Again. But the bathroom smells delightful now!
William has been hard at work on his K'Nex roller coaster he earned for having finally hit 60 lbs. before surgery. Unfortunately he's back down to 52 lbs now, but he worked hard for the 60 lbs. He finished the roller coaster last night and it's his pride and joy. Today I let him go to the fire station with Sam and Cole and Sam's mom. The three of them are in a mad dash to finish their Wolf badge requirements for cub scouts before they turn 9. I was hesitant to let William go, since he is probably neutropenic today, but it's a fine line between restrictions that cancer defines and resilience and normalcy that he defines. Cancer lost. William had a fantastic time! The fire fighters were a little late for the tour because they just got back from a house fire and halfway through the tour the sirens went off and they all scrambled and left on a call to a car accident. Although the tour was cut short from the typical tour items, the boys loved seeing them quickly pull on all their gear and head out of the station. I'm glad William got to experience something exciting today.
Sunday, October 10, 2010
Round 6 of chemo completed
Home from the hospital on Friday at 6PM
Nausea under control
No mouth sores---yet
Working on increasing appetite
So happy to be home
Very grateful Grandpa Chad was here to take care of the boys
Mom and Dad exhausted
All going to bed
Thursday, October 7, 2010
He was a trooper and winced just a couple times. A dose of morphine beforehand helped to ease the whole process.
We're still working on eating and his nausea medication was upgraded again. He is now on a continuous infusion of Zofran. We're shooting for discharge tomorrow afternoon and I'm ready to collapse in my own bed. I had the worst night sleep yet last night. Let's just say I wish I knew what the other two mothers took last night because I had to call the nurse each time their child's IV pumps started beeping during the night (and it was multiple times). I have to call the nurse each time for our roommate too because he either sleeps through it or has his headphones turned up too loud. And William is being hydrated with so much fluid to help flush the chemo out of his body, he has to get up several times during the night too. And none of the beeps and bathroom breaks seemed to happen at the same time!!!
The other cause of excitement and then tears was the long awaited airing of the PBS documentary about canine companions on "Healing Quest". William was interviewed back in June with Millie, one of the dogs used by Child Life here at the hospital. We love the dogs and have watched them work their magic with William on many occasions. Our good friend, Claire, and her sister, Jessie, are also in the documentary. William was so excited to see it, but broke out in tears as he was referred to as Billy. We have no idea how they came up with that because Ryan even refers to William as William when interviewed. William said, "I hate the name Billy and it's not me." It broke my heart. Luckily Millie was just outside our door on her way home when we watched the clip and the tears came. Millie came in and William got to stroke her for a few minutes until he felt better. It aired in San Francisco last week and airs here in Sacramento on Sunday at 11 AM on KVIE (PBS).
We love Millie, Hazel, and Greta and their fantastic handlers. Our hospital has an amazing Child Life program and we have really grown to love many of the specialists.
Wednesday, October 6, 2010
Our roommate is a nice and pleasant boy. He's 15 or 16 and doesn't spend much time in the room because I'm sure he doesn't love it either and would rather hang out with the other teenagers here. So it's all good and we'll just keep counting down the days until we're home. I'd hate to be filling a spot in the quad room that perhaps someone else needs more than we do!
William is doing okay. He seems more nauseated and we've been increasing his nausea medication. He's managing to keep everything down, but then again, he's also not eating because he feels sick. He says he's seeing double and we think Ativan is the culprit, but we'll keep monitoring and hoping the nausea is controlled by the increased Zofran. But all in all, he is pleasant and wants me to just hold him. I love that part! Dad may be good at being his MarioKart buddy and stay-up-late buddy, but he asks me to hold him. I need that as much as William does.
Thanks to Lisa for posting the pictures yesterday. It was great to see all the boys together. I wish I would have taken some video so you all could hear how loud they were. Good times, but the noise didn't land us in a private room. Better luck next time.
Yesterday was hard for me. That translates to a hard day for Ryan. It's often hard on our marriage. I know our marriage is strong and will survive, but we are having plenty of opportunity to improve communication and demonstrate understanding. I think part of the difficulty yesterday was just all the stress of the past week that built up, but never surfaced because of the continued need to hold it together. Yes, folks, I still lose it from time to time (and so does Ryan). Some small, insignificant, and often unrelated event usually tips the bucket and the tears spill. I had a few reminders yesterday that I can't control much in my life and need to keep letting the little things go that really don't matter. But I want them to matter.
What I've listened to so far from General Conference has filled my bucket and helped me keep things in perspective. (I love that my new phone lets me listen to the talks during my 30+ minutes in the car between home and hospital!) I have so much to be grateful for and each time I find myself complaining, I realize how blessed I really am. This chapter in our lives is hard and it stinks and I want it to end (that's stating the facts, not complaining), but I don't want to miss out on learning something I need to learn or gaining strength I may need to sustain me or my family somewhere down the road. So I'm trying to learn some serious patience through all this. Ryan is much better at patience than I am. I love that about him and need him to have much patience because I can be quite stubborn and opinionated.
I saw this video today and hope I'm holding out for a whole plate full of marshmallows!
Tuesday, October 5, 2010
I brought the wrong lens and had to go into other patients' rooms to back out to get the boys in the shots (another reason for a single room!). It was a good visit and the scar is even better in person. Julie and I got to talk in the hall and we never run out of things to say! If you don't believe me, just ask AT & T and Verizon about our phone bills lately.
Thank you both for the visit. Go to sleep, Julie!
Monday, October 4, 2010
- Disconnected from all IV connections.
- Took a shower (scrubbed off all residual "stickies" from surgery).
- Took several walks around the hospital floor and even got cleared to take a walk outside.
- Walked on the wild side, or should I say, walked across the street just to say we left hospital property for a few minutes.
- Increasing his solids intake---he should have more room for his stomach with the tumor and kidney absent.
- Abdomen still quite tender and pain in shoulders from air bubbles still working their way out from surgery.
- Pain will now be managed by morphine and Tylenol w/codeine as needed.
- Still in PICU, but only because of staffing issues on the regular floor. Will be transferred in the morning.
- Scheduled to start Round 6 of chemo in the morning.
- Hoping to be discharged by Friday afternoon, pending nausea control.
- Grandpa Chad is taking his shift at the hospital tonight---we'll see how he likes the sleepchair!
Sunday, October 3, 2010
All his brothers came to visit this afternoon too. William enjoyed handing out packs of Skittles to each of them, but I think their commotion was a little draining on him by the end of their visit. They all ooohed and ahhhed at the scar and then wanted to know where the kitchen was with the fridge full of chocolate milk and Sprite! It was nice to be together as a family and I hope it helps the boys to have a physical image of where William is when we say he's at the hospital.
The other highlight of the day was Connor's visit. Connor has a liver disease called Congenital Hepatic Fibrosis and has spent his share of time in hospitals. He had surgery at the end of December to reroute some veins going from his spleen to his liver and reconnect them to veins going to his kidney. So basically, serious business going on in similar parts of the body as William. Connor is a true fighter! www.connorsjourney.com. He was nice enough to come show William his scar. It was amazing to see! Connor's scar is the same shape and in the same place as William's scar. For being only 9 months old, his scar looks fantastic. It is so light and Connor even said it's shrunk! Thanks, Connor (and Jared and Tiffany)!
I know my picture quality is a little grainy, but isn't it great that you have to look so hard to see Connor's scar?
Saturday, October 2, 2010
Happy Birthday, Clark!
We love you so much and the laughter and silliness you bring to our family!
- Epidural removed.
- NG tube gone. I discovered it pulled out around 3 AM. Still not sure if he pulled it out in his sleep or coughed it out, but at least it's not being put back in.
- Took his first sips of juice. Had only clear fluids on Tuesday and nothing at all since early Wednesday morning.
- Off oxygen. He was put back on it during the night when his left lung appeared to have greatly diminished capacity.
- PCA hooked up---patient controlled analgesic which gives him a button to push to control his pain.
- Sat in a chair for a few hours.
- Foley in bladder removed.
- Incision bandage removed.
Friday, October 1, 2010
Me to nurse: "At least he started talking." (chuckle, chuckle) "The morphine will kick in in a few minutes, right?"
The nurse and I just gently repositioned William to help ward off bed sores and pneumonia. It was obviously not appreciated by William. He is slowly on the mend, but slowly is the key word. Today's goals feel lofty, but we have them nonetheless: Try to sit up, remove epidural, get off oxygen, work on removing bandage from incision to let it air out.
I talked to the surgeon in more detail about the surgery during her daily rounds and this is what I learned:
- She takes neuroblastomas a bit personal because they are so hard to remove and she refuses to let them beat her. (That's my kind of surgeon!!!)
- The tumor was about the size of a softball which included the kidney and adrenal gland.
- It was removed in one piece.
- She usually takes a picture, but didn't because she was so exhausted and ready for it to be sent it off to pathology. She'll check with the pathologist to see if he took any pictures.
- She saw a lot of William's insides. She went all the way to his spine as a portion of it was attached to the muscles around the spine. She saw his liver, pancreas, spine, stomach, spleen, intestines.... This basically means there was a lot of moving things around which easily explains the painful recovery involved.
- There wasn't much tumor left to be removed around the aorta and other major arteries. (huge blessing for the complications that can create in surgery)
By the way, I failed to mention sooner that the month of September was Childhood Cancer Awareness Month. I'm more aware than I thought I'd ever be and this is a good thing. I think it's fitting to recognize that William made a large tumor donation to childhood cancer research for neuroblastoma on September 29, 2010!