Tuesday, December 20, 2011

This past week contained quite the roller coaster of emotions. We are truly touched and humbled by the continuous outpouring of thoughtfulness, kindness, service, well-wishes, concern, love, and support. Thank you! Thank you! We know we may never have the opportunity to personally thank some of you, but know that you have impacted our family for good and it is so appreciated.

During a conversation this past week about ongoing treatment planning, it became evident that I obviously didn't know about recent findings from the post surgery CT scan done earlier this month for radiation mapping purposes. The scan revealed possible new tumor growth in his chest and right abdomen. It is not completely evident if it is really new growth or just something they didn't see before. It came as quite the shock because the doctors forgot to tell us about it. We never thought to follow up on the scan because we weren't expecting any information from it. It was supposed to be just for mapping. I suppose we could have been angry at such an oversight, but we are grateful for the happy week we had without added stress and anxiety. Knowing or not knowing didn't change any action, it just made the time less stressful. At this point, treatment isn't being changed. The follow-up scans that occur after every 2 chemo cycles will be done the first week of January. At that point, more information will hopefully be on the table and further decisions can be made.

Round 4 of chemo started Monday. It should be fairly uneventful. Hopefully. He started radiation on his abdomen Monday morning and he will be transported by ambulance each day for radiation while in the hospital. Nothing like mixing it up. Now we'll see if I can do something about the 8am radiation appointment time since it necessitates a 7:20 am transport pick up. Ugh. William should return home on the 24th, just in time to celebrate Christmas Eve as a family. We are so grateful Ryan's mom could come entertain the boys this week, especially since they are all out of school.

The hospital and holidays are never sometimes a nice combination. When William got off the elevator onto the floor for admittance, the hallway and playroom were full of police officers, a Santa, and carts full of boxes with presents for children. William scored a cool remote control car that is keeping him up and out of bed, racing it up and down the hallways.

Today an older brother of one of the patients brought 30 giant teddy bears and lots of smaller ones for all the pediatric patients. William scored a giant one. I'm not sure how I feel about it since I can't think of where we'll put it, but I know the boys will all be excited. And sweet William said, "I know we really don't need it, but my brothers will all love sharing it." 

Monday, December 12, 2011

Inspiration or Desperation

I often wonder if various life events are a result of inspiration or desperation. A last minute weekday pizza dinner is a perfect example of desperation, but I could argue the whole concept of "Take-n-Bake" or "Hot-n-Ready" being pure genius and inspiration. But we all know it's all about lack of planning, hungry children, and worn out parents. Choosing to sell our first little starter home and buy a larger home while the market was sinking proved to be inspired because I don't know where all our frequent house guests would have slept or what their poor quality of accommodations would have been during this tumultuous past 18 months. I have a strong belief that more often than not, inspiration plays a role in even the small things.

A couple months ago, as we were faced with the reality of the cancer returning, Ryan and I sat down and discussed how we were going to cope as a family all over again. What would we do the same? We would continue to maintain routines and a sense of normalcy with all our children whenever possible. We would continue to be hopeful and faithful and optimistic and strong. We would look for opportunities to increase family bonds. What would we do differently? We would simplify our lives even more. We would improve William's quality of life as much as possible, even if it meant taking some risks that we weren't willing to take the first time (i.e. attend school). Soccer season was in full force as we were contemplating simplifying. We decided we would take a break from all organized sports so we could have dinner together each night and have weekends free for family fun. We have enough boys to create our own teams anyhow! We want to make each day count.

William made it home last Tuesday after 21 days in the hospital. Wow, it felt so good to all sleep under the same roof that night. Wednesday morning, William and I got up bright and early and headed back downtown for his radiation appointment on his ankle. (His last ankle radiation is tomorrow morning). Then we headed home, packed our bags, gathered our snow gear, checked the kids out of school early, and headed up to Tahoe for a quick overnight getaway. (We had to be home Thursday afternoon for his next radiation appointment). It was wonderful...too short, but wonderful. A huge thank you to my aunt and uncle for such a gift! We all enjoyed some pool and hot tub time before dinner---emphasis on hot tub. Even William managed to make it work. Dinner was a family favorite: Fondue! It's all about the weapon-like utensils. A movie, popcorn, hot chocolate, and all snuggled up together on the bed was a perfect, relaxing evening after a long month of stress and separation. Thursday morning we had a big breakfast (trying to pack calories on William's little body), donned our snow gear, packed up the car, and headed to the Heavenly Gondola to have an adventure and enjoy a spectacular view. Ryan and I had second thoughts when we saw the price and calculated the cost for our entire family. After a few gasps and gags, we knew we had to do it because it is what we promised the boys and what we wanted to do as a family. $170 for tickets and another $30 for hot chocolate, hearing the boys squeal with excitement and tell us it was the best vacation ever--even better than Disneyland (I think they got a little carried away) made it priceless. The views were spectacular and the snow wheelchair was sweet. The man-made snow was disappointing for snowball and snowman making, but Ryan managed to find some deep snow for the boys to feel adventurous. We left and headed straight back to the hospital in Sacramento for William's radiation appointment and made it with not a minute to spare.

We were desperate for some happy, family time. Inspiration saw our need for a break and convinced us that we could take off mid-week, spur-of-the-moment, and just find peace and love with one another. (notice I didn't say quiet!)

Saturday, December 3, 2011

Records and Riding in Ambulances with a Boy

Not including the 26-day stint in S.F. for transplant, William has set a personal record of consecutive days in the hospital: 18 and counting. And it's getting a little old. Okay, big old!

The PICU kicked him out on Monday. That's a good kind of eviction. The floor and his regular nurses anxiously awaited his return. Floor is hospital lingo for the regular rooms. His favorite night nurse even had dibs on him as soon as he got out. Since then it's been a bit of a holding pattern all week, waiting for the green light from the surgeon and oncologists to start chemo---the main issue being the periodic spiking of low grade fevers. Thankfully, blood cultures remain negative. Then his left ankle took a turn for the worse after a heroic late night walk around the floor on Monday night to show off his rapid recovery. The following day he was in so much pain he wouldn't let anyone touch it. The physical therapist put him on non-weight bearing status until further investigation. An x-ray on Wednesday revealed his ankle tumor getting bigger. The surgeon and oncologists agreed the fevers were likely due to the effusion and junk still in both lungs. Something that only time and increased activity will truly remedy. So the combination of the increased tumor growth and determined fever source, chemo began Thursday night. We cheered! Who cheers for chemo? We do. Because that means we can actually estimate the remaining days in the hospital. Five days of chemo will hopefully earn us a get out of jail hospital card for free. (We won't talk about how much a 3 week stay which included major surgery, 11 days in the PICU, chemotherapy... really costs!)

Other very noteworthy news: William took an ambulance ride! It was his first and what a nice change of pace that was. Sound crazy? Let me explain. In an effort to aggressively go after his tumors, William will be undergoing radiation and chemotherapy at the same time. The radiology oncology center is at the new hospital. We are stuck at the old hospital (there are other adjectives I could use for physical condition of this hospital). This necessitates an ambulance transport each day for radiation. Radiation will be on his left ankle for now in order to let his abdomen heal a little more. The next round of chemo will include the abdomen radiation. On Friday, William had his simulation appointment where they do all the measurements, radiation calculations, foot positioning mold, and tattoos. Yes, although last time was unpleasant, I let him get four more tattoos. But I'm holding to my word that he's only allowed to get dots!

William had a great time. Our paramedics and nurse were lots of fun and the paramedics even turned on the lights and siren for him.

William is doing a great job with his physical therapy. He's is a wonder with a walker! And if you saw his biceps, you'd be impressed he even has strength to hold himself up! The kid is skinny, skinny!

Tuesday is our anticipated freedom day. If all things go as planned, we'll be able to leave the hospital and go straight to radiation and then home. (And should also make it home in time to do school pick ups!) I even scheduled his radiation appointment time on Wednesday to be first thing in the morning and Thursday's appointment to be the last of the day so we can sneak our family up to Tahoe for 2 days and a night. If I could, I'd even schedule a fresh snowfall up there for some sledding, but I won't push our luck. We are all so very, very anxious to just be together as a family and enjoy some peace and quiet.

So if we must set records, we hope we can find some things to celebrate. I think heading home is reason enough to always celebrate. May the next few days go exactly as anticipated...fingers crossed with a sarcastic grin, and hopeful heart.

Sunday, November 27, 2011

Boring Patient Means Good Patient

William is getting closer and closer to being a boring patient for the PICU doctors. He was able to get out of bed twice yesterday to make it a few steps to the unique toilet that folds out of the wall in the room (kind of like a murphy bed, but think camping trailer classy). He also spent a couple hours sitting in a chair today. All good progress and no trivial undertaking with such a big abdominal surgery. Hopefully the NG tube in his nose that is draining his stomach will come out today. He continues to get IV nutrition, but his system should be recovered enough to start drinking today. He has lost weight since he hasn't been able to eat for the last 5 days, so he is hoping a cheeseburger and fries are in his near future, as well as a real Thanksgiving Dinner. Ryan has enjoyed some good quality time with William at the hospital, and William was feeling good enough to play Battleship, Jenga, and War.

We're very grateful for all the help we've received from friends and family, and for being watched over by a loving Heavenly Father. One of the scriptures William has enjoyed reading this week in the hospital from the Book of Mormon is in Alma Chapter 37, verses 35-37: "O, remember my son, and learn wisdom in thy youth; yea, learn in thy youth to keep the commandments of God. Yea, and cry unto God for all thy support; yea, let all thy doings be unto the Lord, and whithersoever thou goest let it be in the Lord; yea, let the affections of thy heart be placed upon the Lord forever. Counsel with the Lord in all thy doings, and he will direct thee for good; yea, when thou liest down at night lie down unto the Lord, that he may watch over you in your sleep; and when thou risest in the morning let thy heart be full of thanks unto God; and if ye do these things, ye shall be lifted up at the last day."

Ryan wrote the above portion. Now I'm on hospital duty and thought I'd add a quick update and some pictures.

The NG tube just came out! He was a trooper and only insisted on an extra bolus of Dilaudid and some Benedryl to help him relax. Usually he insists on the good stuff, like Ativan and Versed. Oh my, the kid and his knowledge of narcotics! Next step: sipping water. Still waiting on that one.
I couldn't resist posting this one! This was taken Sunday afternoon, 3 days before he was admitted for this wild ride.
Just before going into surgery
Day after surgery. He insisted on a visit from Hazel!
Brave Warrior!The tape on the nose is holding his NG tube in place. Now that's gone!

Friday, November 25, 2011

The Road to Recovery

Phenomenal, excellent, and successful are the words being used to describe William's recovery and surgery. We are truly thankful.

Wednesday morning, a little after 12 hours post surgery, William's ventilator was removed. The surgeon had anticipated he would be on the ventilator for at least 24 hours, if not more. He was assigned 2 nurses during the night after surgery and during the middle of the night, one of the nurses had to go find something else to do since he was doing so great!

Thursday was a day of tubes. They removed all arterial I.V. lines, his chest tube, and foley catheter. He was a champ---especially since line placements and removals are his least favorite things. He'd pick a shot over any of those. He still has an NG tube up his nose to drain his stomach since his bowels and stomach are still asleep after such a long and action-packed surgery. He also continues to be on oxygen, but at a low rate. Last night he was started on TPN (I.V. nutrition). His pain and breathing exercises are the main items of attention. His pain is controlled with a constant baseline dose and a PCA button he can push any time he needs a little extra boost. His lungs are showing a little fluid build up, but that can be expected after all the fluids he received during surgery.

Surgery tidbits:
  • lost 4000mls of blood. That's 4 liters.
  • received 12 adult-sized units of blood
  • received 4 units of platelets
  • received 5 units of FFP (fresh frozen plasma)
  • received 1 jumbo cryoprecipitate
  • received 1 unit of factor VII
The above mentioned blood products that sound foreign to most of you are all to aid in the clotting process. I did a little googling of the vocabulary and got a better sense of how severe the bleeding was during surgery and now understand a little better why the surgeon and anesthesiologist looked particularly harried after surgery. Ryan and I saw it in their eyes after surgery when they told us how it all went. We are grateful we didn't get periodic updates during the surgery because we would have been worried sick if we had know what was happening.

Today we also learned the pathology on William's tumor. It showed most of the tissue in the tumor was removed was dead, or necrotic, in response to the last 2 rounds of chemotherapy. As soon as he recovers from surgery, which could be as soon as the middle of next week, he will start radiation on his abdomen and ankle 5 days a week for 3 weeks and will also continue to get chemotherapy at the same time. We'll see how the details unfold. In the meantime, William continues to improve a bit each day. It has been quite a week and we are extremely grateful for his progress and good spirits.

Tuesday, November 22, 2011

Post-surgery Update

Friend Lisa here.  First, the update on William.

Here is the text I got from Julie earlier:

Done. 85% of everything removed. Surgeon had choice expletives** for how she felt about the tumor! She's awesome and we love her honesty. Surgery was rough and she had to make some tough calls at times, but felt she was as aggressive as she could be and keep him alive. Bleeding was a major issue and he was treated as a trauma patient several times. He got 12 adult sized blood units (3x more than anticipated and more than twice his body's volume). The smaller tumors were just mush and she scooped out as much as possible. His original horizontal scar was reopened and an additional vertical one was made from sternum down to the base of his abdomen. He is on a ventilator and will be heavily sedated be for a few days. We are relieved and grateful that so much was debulked. She took a picture for me and it's impressive. I'll have to think about posting on the blog because it's a nasty looking
bugger. Perhaps just let me know if you want to see it and I'll shoot you an email.

I can't wait to see the photos!  I just got off the phone with Julie.  She and Ryan are with William in his room.  As we talked, she was eating fries from Jack's Urban Eats and telling me about the wonderful lunch they had at the French restaurant near the hospital.  I am glad they are taking care of themselves today.  Julie's mom flew in last night and I got to talk with her and Julie until far too late in the night.  She is so wonderful and I know it helps Ryan and Julie knowing that the boys are in such loving hands. 

Thank you all for your blog comments, Facebook comments, and your thoughts and prayers; they mean so much to Julie and Ryan. 

**And Julie told me which expletives were used by Will's surgeon and I can verify they were all  appropriately used.

Surgery: A Go

William looked really good yesterday. He was pleasant and happy, took a few walks around the PICU and anxiously counted down the minutes until his best friend, James, arrived to hang out. He was a few minutes late and reminded him of that fact! We left them alone to play their video games and Ryan and I and Lisa headed out for a fresh air walk to Sellands to eat (a walk is mandatory to counter balance the deliciousness of their food) and discuss the meeting with our surgeon. Without reminding, they remembered to do William's breathing treatment he does every hour and even set their itouches to time it for 5 minutes. Such good boys!

 Surgeon's meeting:
  • She'll do it. She has to do it. This is not one she can delay until after Thanksgiving.
  • Physically he looks strong enough: Sitting up in bed, talking, O2 set fairly low, continued progress with respiratory therapist to pop open the bronchioles of his left lung.
  • His abdomen continues to swell larger.
  • Given the nature and rate of growth of his tumor it needs to happen immediately.
  • Because it will be a long, invasive surgery, she will be going after all three tumors. She will have a more clear idea of what she is dealing with once she opens him up and can see and feel around. 
  • The approach is to get it all because she does not want to put him through any more surgeries like this if at all possible.
  • This surgery will be just as long and difficult, if not more so, like the one she did to remove his tumor last year. This is because his body is not as strong, having gone through so much additional treatment since then.
  • There are no real promises going into this, as with most tricky surgeries. She is a very skilled surgeon and we love her and trust her with our son. (And she just go back from Mexico and is well rested!)
  • The goal is to remove as much tumor mass as possible to ease the pressure on his lungs and other organs without damaging any vital organs. All of this is to give him more quality of life.
Ryan and I are holding up just fine. We wake up each morning and get out of bed because usually little sweaty bodies crawl into bed and force us. We don't pretend this is easy. This was never in OUR plans for our sweet son. But he enriches our lives more than we planned. He has teaches us a piece of why Jesus Christ asks us to be a little child. He is humble and meek, patience and loving, and unwavering in obedience, even when things are hard. We love William so dearly and are repeatedly amazed by his strength, faith, and submissiveness to God's will. He never complains or asks 'why me', he simply trudges forward and patiently endures horrendous amounts of pain.

We are feeling the peace and comfort that comes from all of your many thoughts and prayers and fasts. Thank you. A heartfelt thank you!

Sunday, November 20, 2011

Swept Off Our Feet

... and making a 180 degree turn.

Thursday night:
  • Increased difficulty breathing.
  • Put on oxygen since it was assumed low oxygen sats were due to pressure of the tumor on the lungs and diaphragm.
  • Hemoglobin dropped again and anticipated another transfusion Friday due to possible bleeding into the tumor.
Friday morning:
  • Still spiking fevers, but blood cultures still negative.
  • Needed another blood transfusion, but all other labs stable and good.
  • Planned to start chemo that night or more likely on Saturday morning.
  • Chest x-ray to address breathing issues. (Tuesday scans showed chest/lungs were clear).
Friday noon:
  • While walking out of room to go to x-ray, informed that after consultation with surgeons, surgery is scheduled for Tuesday to remove as much of the large tumor as possible.
  • Surgery decision made due to bleeding in the tumor for the second time (happened after chemo round 1 too) and greatly increased risk of a large bleed occurring with next chemo cycle that would be too big to manage with transfusions. (see below for more detailed explanation).
Friday afternoon:
  • Surprising x-ray results showed left lung completely surrounded by fluid and almost no function in upper or lower left lobes.
  • Surgery to insert chest tube scheduled for that evening.
Friday night:
  • Chest tube procedure successful.
  • More than 500ml (half a liter) of blood and fluid drained immediately.
  • Post surgery x-ray disconcerting as almost no improvement in lung function evident.
  • Went over CT scans from Tuesday very carefully with the surgeon examining the tumor images.
  • Overwhelming.
  • 3 tumors in abdomen.
    • Very large one in upper left quadrant of abdomen.
    • Smaller, more dense one just below it and extending into his pelvis. (non-operable for now)
    • Another dense one in the bottom of the pelvis. (non-operable for now)
  • Moved to PICU for continued observation.
Saturday afternoon/evening
  • Hemoglobin dropped again. Double unit transfusion.
  • Chest x-ray reveals no improvement in left lung.
  • CT scan to figure things out a little better.
    • Left lung: suspected major infection and minimal capacity.
    • Lower right lung beginning to gather fluid.
  • Becoming critically important to restore lung function or he won't have enough lung capacity to undergo surgery. (need more than a single lung to provide O2 during extensive surgery).
  • Intensive respiratory therapy begins.
  • Chest x-ray shows improvement. Left lung shows pockets of air opening up.
  • Clotting levels are high meaning his blood is not clotting well enough.
  • Received fresh frozen plasma to aid in clotting. This will be good in preparation for surgery.
In depth explanation:

His tumors began as fairly solid masses (more or less). Chemotherapy gradually kills the cancer cells. When this happens, sometimes the tumor begins to shrink in on itself. This is what William's tumor did last time and what the two smaller tumors appear to be doing. The large tumor is not behaving so nicely. As the neucrosis (dying cancer cells) is occurring they break apart from each other. This make the tumor become less dense (think of rotting fruit), but the tumor begins to swell as the cells move apart. The tumor becomes inflammed as the body tries to go in and repair/heal. Remember that since the body produced the cancer cells, it does not recognize it as a foreign body. As this is happening, fluid is released from the cells and is also produced by the body. Also, tumors always have a blood source. As the cells die and fall apart, the blood no longer has a destination, thus the bleeding. Often it will dry up on its own and sometimes it doesn't. We do not know if the blood supply to his large tumor is a large vessel or several small vessels. Since the bleeding has occurred after both rounds of chemotherapy, he is at a greater risk of developing a larger bleed with continued chemo that could not be rectified by transfusion. This would occur when the chemotherapy continues to weaken the make up of the tumor and possibly perforates the blood vessel and he could suffer from a massive internal bleed. So the plan is to remove as much of the large, swelling tumor as possible as long as we can get him stable enough.

Monday will be the pow wow with the surgeons as the surgery plans are made and his current state is assessed. Please pray for his lung capacity to improve and sustain him and for the doctors to make the right decisions and be skilled in the surgery process.

Wednesday, November 16, 2011

Happy and Moving Forward

It is often hard to know where to start when I've been composing blogs in my head, but never took the time to write them. So I'll just start by spewing out a recap of events. I'd post pictures, but I'd have to have my camera with me and I don't. More on why later in the post.

William's birthday was great (see last post). He seemed a bit pale, but his lips remained pink enough (in my judgement) to refrain from calling the doctor. He had a clinic visit the next day anyway. As expected, his cbc revealed a hemoglobin level of 8.3 and platelets at 24. The magic transfusion numbers are 8.0 and 20, but the doctor sent us up for blood and platelets anyway to eliminate the need to come back in a day or so. And it was a great boost for his upcoming party with friends on Friday. Thank you. Also, because we are well seasoned in the life and style of neutropenic cycles, the doctor let us cancel our next two scheduled visits, trusting I would call for anything on the list of "when to call the doctor." Awesome. Sometimes there are perks to being a repeat cancer offender.

The birthday party was fantastic. It was fairly low key as William doesn't have the stamina to run around or do much in the way of sustained physical activity, but it was perfect. He hosted a movie night with some of his friends to watch "Star Wars: The Phantom Menace." We borrowed a projector, set up couches like stadium seating by putting one sofa on risers, ordered pizza, popped popcorn and had plenty of Skittles, Starbursts, and M&Ms on hand. The boys laughed and probably had more fun making wall shadows with the projector. I loved watching William laugh and be silly with so many friends. He just felt like a normal 10 year old kid for the night. That night was one of our small miracles.

A couple months ago (before the cancer recurrence) I was asked if our family would sing in church. I accepted. We've never done this or advertised any singing ability. Ryan sings beautifully. I will sing in a choir while preferably standing next to a strong singer. The boys enjoy singing with the radio and in primary (church class). But I've always wanted my boys to be singers. I heard 4 or 5 brothers sing in church when my boys were very little. The brothers were in their late teens to early twenties. As I listened to them I thought, "That's what I can do with 5 boys." A few weeks ago, while feeling quite overwhelmed, I canceled our singing debut. But my musically gifted mother, with a special talent for children's choir's, found a beautiful and simple piece of music and took it upon herself to teach the boys the song while she was visiting during Halloween. At the last minute, with a bit of rearranging and program approval, we were back on the program. Saturday morning we met at the church to rehearse with our accompanist for the first and only time. It was near disastrous. The boys kept fighting and whining and just plain not fun to deal with. We left praying for a small miracle that it would all work out. I just wanted a sweet memory of our family singing together. Is that really too much to ask? They sang beautifully. Soren stood in front and was the typical flirt he is and sang out loud and clear. No one punched, kicked, or shoved one another. No on touched, licked, or breathed heavily into the mic. It was perfect. And if it wasn't perfect, don't tell me because that's how I'm going to remember it.

The next day, Monday, he started to look more pale. By that evening, I decided I'd call the doctor. I drew labs and dropped them off at the hospital. The doctor called me a couple hours later to confirm that his hemoglobin was indeed low: 7.9. His body should have be on the upswing since the next round of chemo was scheduled for Thursday, so we decided to wait and see if his body would start making more red blood cells on its own. Every transfusion carries its own set of risks. Besides, he was acting quite pleasant and cheerful, not overly fatigued. Early Tuesday morning we headed to the hospital for a CT scan and bone scan to assess the current state of his disease and the effectiveness of his completed chemo cycles. While sitting in the hallway, waiting to drink the contrast dye for the CT and get the contrast injection for the bone scan, he starting screaming in pain (in his tumor side) and became somewhat inconsolable. At one point I was cradling him in my arms and singing his favorite lullaby. During the wait time before the scan, we walked over to the clinic and saw the doctor. They gave him some Ativan. Love that stuff. Then his cbc revealed a hemoglobin of 7.2. He wasn't recovering on his own. The doctor guessed he may still be bleeding in his tumor, but the scans would reveal more of what was going on. So we added transfusion to our list of things to do at the hospital. We had hoped to be home by noon that day, but home by 5pm works too. It's home just the same.

This morning he still complained of pain in his side. I watched him throughout the morning and he seemed to fatigue quickly. Granted, doing math homework would fatigue most of us. After talking to the clinic a few times, I brought him back to the clinic to check him out. He was so tired he didn't even want to get out of his wheelchair. His labs looked fine, but heart rate was high. It was decided to admit him for pain control. William said he wanted to be admitted. Wow. That says something about how he was feeling. Then he spiked a fever so we added antibiotics to the reasons to admit. He was scheduled to be admitted on Thursday for chemo anyway. What's one extra night? Hopefully it's just one. The jury is still out as to whether he'll be able to start chemo tomorrow night or be delayed a few days. We only have one or two days to mess with or William's stay will extend over Thanksgiving.

The scans revealed the tumors are responding to treatment. The sense I got from the doctor was the response was acceptable, not amazing or miraculous, but acceptable and good enough. We will continue to move forward. The main tumor in his abdomen is actually larger in size. However, the interior of the tumor appears to be neurcrotic, dead or dying cells. The enlarged size is due to swelling and inflammation brought on by the active neucrosis. This is causing William's pain. Evidently, also has a smaller tumor in his lower abdomen. We missed this fact in reading the previous scan results and it hasn't been discussed because it's fairly insignificant to the the rest of the activity going on inside him. The smaller tumor has shrunk. The ankle tumor remains unchanged and the activity in his chest, likely in the lymph nodes, appears to have decreased. So we're happy and moving forward.

Monday, November 7, 2011

Make It A Decade!

Happy 10th Birthday to my sweet William!

He had a great day spent at home: breakfast in bed, favorite foods for each meal, movies, cartoons.... Thank you, neutropenia. Don't we all wish we could just stay at home and rest sometimes on our birthday? My mom was in town to help out with the stuff that gets neglected when we're in the hospital so often and William and the boys all enjoyed having her read and sing with them. Thanks, Mom, for juggling all you do to make the trip. Thanks, Dad, Uncle Richard, Aunt Linda, and Natalie for taking over all her responsibilities to let her come.

One of the best treats was the Angry Birds cake. Thanks, Beth! (She makes the most delicious and amazing cakes and cupcakes). Perhaps I shouldn't admit that we ate cake for breakfast too!
Soren's gift to William was finally agreeing to the buzz cut. Soren commented, "It's okay because I still look totally awesome!" Note to self: his self-esteem is still intact.

William was born a couple years before we entered the digital age. We had some fun sorting through many of the envelopes of pictures I have tucked away in boxes of when he was born. I'm not a scrapbook-er. Period. But seeing how happy he was looking at the pictures and listening to our stories makes me want to bump that up on my priority list. I suppose I may be somewhat genetically challenged in that area given my mom is still trying to find time to do mine. Here's a fun collage of what I do have stored in my computer.Happy Birthday, William. I am so blessed to have a son so full of strength, patience, tenderness, faith, and love.

Monday, October 31, 2011

The Fun Squeezed In

The past month has been a whirlwind of events and emotions and I haven't even had a chance to post pictures from Disneyland. But I want to back up a bit from Disneyland with this post.

William was in the hospital in mid September to get his broviac out (in preparation for our Disneyland trip). Unfortunately, he had an infection that kept him in the hospital longer than hoped and prevented him from using some Giants baseball tickets that had been given to him by UCSF to celebrated being done with treatment. Ryan and 3 of the boys enjoyed the game instead.
Tuesday, the day William finally got out of the hospital was one of their last home games that fit in our schedule to attend. Ryan searched the internet and found some tickets (not the 7th row from UCSF, but tickets in our budget). He invited two of his friend and they all ignored the fact it was a school night and they celebrated together! Of course, it went into extra innings and they got home after 1 am. But the memories are priceless.Who doesn't love a foam finger?

What's a baseball game without a hot dog?

So that was Tuesday night. Then Ryan and his good friend, Randy, a former tight end for UCLA, started talking about the upcoming UCLA vs. Texas football game that weekend. They do this every year and little comes of it due to their dedication to their kid's rec soccer games. Ryan attended The University of Texas at Austin for grad school and William was born in Austin. All of the sudden it became a road trip on Friday night to watch the game Saturday and then drive home that night. Randy's oldest daughter is William's age. Randy's connections with the athletic department got them great tickets to the game and to a tailgate party before the game. They also had passes onto the field with the players during warm ups and as the teams ran onto the field. They had a fantastic time. And it didn't hurt that Texas played quite well. Hook 'em Horns!
After getting the sporting events out of the system, he got down to the main perk and purpose of getting the broviac out: SWIMMING! My amazing friend, Lisa, has an uncanny connection to somebody everywhere and in every profession. She works closely with the local aquatic center (that's what happens when you're president of the local rec swim team among the dozens of other hats she wears) and knows some really wonderful, kind, and generous people over there. Because I'm too tired and lazy to post more pictures, here's the link to her blog about the day: The Stuff That Really Matters!

He also enjoyed soaking peacefully in the hot tub for over an hour while we were in Newport after he finally got discharged from the hospital in LA. It's the simple things that bring us joy, right?

The Heebie Jeebies

Round 2 of chemo started on Thursday and is going well. The best part is that we finally got out of the quad room on Saturday morning. Happy dance!

We got out of the quad room because I woke up with bug bites all over my arms, ankles and neck. (And I didn't go outside the day before.) Itchy dance!

It makes me itchy all over just thinking about it. Obviously the sleep chairs are slept on by people from all sorts of living conditions and they are fabric. This has always been a grin and bear it situation---emphasis on bear it! I've always been a bit creeped out by the chairs and you would all probably laugh at my layering routine of blankets, sheets, Thermarest, and pillows before I sleep on them. I typically have at least 5 layers that amount to a few inches on top of the chair cushions. It's borderline "Princess and the Pea." The only problem is that I have no way to really cover/insulate the arms or exterior of the chair. One of the housecleaning ladies cleaning the room we were moved to said she was surprised they could be infested because they wipe them down with an antibacterial wipe. Obviously she's never really looked at the chair with the possibility of having to sleep on it. They are sometimes stained and food and candy wrappers are often stuffed in the cracks. I tried to kindly mention the fact that wipes don't kill the bugs that make their way through the fabric and into the cushions.

The nursing supervisor came and checked out my bites and offered me an all expense paid trip to the E.R. I passed and simply asked to have a nurse check my hair for lice. No lice. Whew! One of our nurses and I looked up all sorts of bites online, i.e., bed bugs, dust mites, fleas, etc. Some of the pictures looked similar, but not quite like what I had. Another nurse came and looked and concluded it was probably some sort of resistant strain of bed bug. Cringe. Cringe. Cringe. I bagged up our pillows and clothes and took them home to wash in very hot water.

The staff was great and very solicitous and even said we could sleep in the empty bed in the new room (a no-no in case the bed is needed for a patient). The quad room has been emptied and remains unoccupied with "closed for cleaning" signs posted on the doors. I like to think I took one for the team and saved some kids and families from a few miserable nights in the quad. But I must admit, every itch I have feels magnified and I think I'd pick more time in the quad over nasty bed bug bites. (gag)

Monday, October 24, 2011

Off With Their Hair

Clark's baptism was wonderful and the stress of getting to that point in our weekend was all worth it. We managed to get some more family pictures snapped right before the baptism and right before the hair spray in William's hair probably wore off in my attempts to keep as much hair on his head. It was so great to have my brother and sister and their families there and a cousin and her family and so many dear friends in attendance. Clark, we love you and are so very proud of your decision to be baptize a member of The Church of Jesus Christ of Latter-day Saints!

The last weekend item: a head shaving party! Isn't that what boys love to do? However, my youngest still puts up a good show of not giving into peer/sibling pressure.

Let's first make it clear that I did not shave my head and never had any intention to do so. William even asked me not to. I guess it's one thing to adjust to a bunch of bald boys, but mom is a different story. It was all about camaraderie, not shock value! Ryan and the first 4 boys went under the clippers. Here are some shots of the fun. William wanted to go in stages.

Saturday, October 22, 2011

Another Cycle of Hair Loss

After 19 of the past 20 days being spent in the hospital, he's home! We got the thumbs up from the doctor Tuesday morning, packed up our stuff and made it out of there by noon. That was the miracle---out by noon. William was still neutropenic, but the morning labs revealed his white blood cell count finally starting to recover.

Thursday labs showed a fully recovered ANC and all related blood counts. Whew. We celebrated by heading straight to Target to buy William's Halloween costume. I bought the other boy's costumes the day before, but William was left behind since we didn't know if his counts were high enough to go into a store. The boys are all super excited and I'm a bit bummed because I love planning and making their costumes. But we are trying to make life simple and I probably spent as much money on costumes as I would have on fabric with only a fraction of the time required. I'm moving on.

The hair is falling out. A gradual thinning is how I would describe the course of his hair loss over the last few days. This morning the course changed. William woke up and hollered, "Where is the lint roller? I'm all itchy with hair all over me!" A balding spot in the back has emerged and I'm trying desperately not to touch it too much. Clark, my new 8 year old, is getting baptized tomorrow night and I really want a nice picture of them in their suit coats, both with hair. William won't be bathing in the morning in my effort to preserve the hair. Otherwise, I probably would have shaved it off today. Perhaps Sunday night I will.

Three days back at school is in the plan for next week. Then he goes back into the hospital on Thursday to begin round 2 of chemotherapy. He is excited to return to his class and I sense the feeling is mutual with all his classmates and friends. I'm guessing his new wheelchair will be more popularity than self-consciousness. Friday was supposed to mark his return to school, but Soren had a preschool field trip to a local pumpkin farm and I opted to have William tag along. William will be in the hospital for Halloween, again, and missed out on that stuff last year. I decided the pumpkin farm and the memories of that day were more important than school. Having gone through this before, this time we are focusing more on the quality of his life. We understand the cycles, routines, risks, etc., and are trying to make this all less devastating.

Monday, October 17, 2011

Set Backs and Strides

Friday night I posted fully expecting to head home. Optimistically or irresponsibly, you pick which it is, I didn't even pack a suitcase. I grabbed some pajamas for William, but that was it. William was admitted that night after his transfusion when he was unable to keep his oxygen saturation above 92% on his own. Ideally, most of us function at 99 or 100%. Low 90s is not great and he even dropped into the 80s frequently. His high respiratory rate and the appearance of labored breathing was cause for concern and another chest x-ray was taken. No significant change. That's good enough for me. But making it to Camp Okizu slipped from our reality.

Saturday morning labs revealed an increase of hemoglobin from 6 to 7. That's unusually small after receiving a unit of blood. Hemoglobin lesson: normal range=11.5-14.5 g/dL. Transfuse at <8 g/dL. Another blood transfusion was ordered and also a platelet transfusion. All attempts at oxygen weening failed as well. This secured another night in the hospital.

At this point I left William in search of a toothbrush and change of clothes. The new hospital may still be under construction and way behind deadlines, but I'm so glad the new Target nearby is finally done.

At 3am, Sunday, the nurses woke us up to tell us William was getting transferred to the PICU for closer observation because of his labored respiratory state. I thought he seemed fairly typical to what he has been the past few days, but I guess the uncertainty of what may be going on was causing increased concern. So I packed up our things quickly and we moved rooms. Another CBC and chest x-ray were ordered. CBC showed no increase in hemoglobin since the 3rd transfusion. X-ray looked fine, but 2 more units of blood were ordered as well as an ultrasound of the primary tumor. The doctor seemed fairly puzzled why he was burning through the red blood cells at an astounding rate. He ordered more labs and urine tests. Everything seemed to check out. William was moved out of the PICU Sunday afternoon, but since his ANC dropped to zero, he was moved behind the double doors in the isolation rooms. He continued to require oxygen, but by the time he was almost done with the second unit of blood for the day, he had enough energy to walk up and down the hall a few times. (The hall is only about 75 ft long). Previously he would feel almost too weak to walk to the bathroom and would panic until he got back into bed and back on oxygen.

This morning, Monday, a new William woke up. His lips were pink, his cheeks had a tinge of color and he actually said he wanted to eat. He sat up without too much difficulty breathing and eventually weened himself off the oxygen. He hasn't requested pain meds or zofran. His hemoglobin made it to 11 (great). His platelets are dropping again, but that is only a 30 minute infusion compared with the 3 hours for blood. He are hopeful he will be able to come home tomorrow, but all will be dependent on labs tomorrow morning, continued good oxygen levels, and decreased respiratory rate (that one is still a bit high, but showing improvement.)

William has jumped back on the weight roller coaster and has become quite skeletal. He also has a wheelchair due to the tumor in his tibia. Too much weight bearing on his leg could cause increased damage to the bone since it is still growing and a foreign mass is in it. His hair is still there and getting so curly. He has tight little ringlets on the top and I love it. He's not supposed to lose it as fast with this round of chemo, but I'm assured that he will. Good thing bald is so beautiful too!

So our lives change and we adjust. Sometimes we move backwards, but hopefully the steps we take forward cover more distance.

Friday, October 14, 2011

One More Week in the Books

Where has the week gone? Oh, yeah. It was sucked up in the hospital. Just like last week too!

William endured 5 days of chemo, finishing around midnight on Monday. He tolerated it well and managed to eat throughout the ordeal. However, his sense of smell was affected. Oh, the hospital food that was wasted...it wasn't tragic. William managed to request Splash Cafe clam chowder (our favorite in Pismo Beach) for breakfast, lunch, and dinner almost every day. Luckily, we came armed with a bunch of it in frozen packages, imported this summer from wonderful family members! McDonald's was the other appetite beneficiary. Sometimes I'm amazed at the things to which I stoop for cancer!

The chest tube became the next hurdle to cross. The rate of fluid drainage kept the tube in until Wednesday and an air pocket in his chest kept him in for another day. And a blood transfusion made him discharged late on Thursday. During these extra days, I learned more about the hierarchy of narcotics. William and Dilaudid became fast friends. After many doses of morphine, William seemed to still be suffering from unnecessary pain from the tube. Enter Dilaudid. It was awesome. William relaxed in a number of minutes and with a sappy look on his face said, "Mommy, I love you. And I really like medicine that makes me feel giggly."

Re-entry into life at home was stressful. Shortly after arriving home, the vomiting began. And the boys were whiny and needy. Can you blame them? Ryan and I felt stretched too thin, but that's parenthood, right? Everyone needed some serious TLC and Ryan and I needed some serious sleep and patience replenishing. The boys eventually got to bed, although Clark was a hold out until 11pm. William began to have some anxiety, often a sign of low oxygen levels. I worked on calming him down and called the doctor, but he eventually went to sleep and so did we.

This morning was crazy. I whisked 4 boys off to the pediatrician for 8:15 am flu shots while Ryan hit the donut shop since my sweet Clark has patiently waited for 2 weeks to take treats to his class for his birthday. Buying donuts is not my typical birthday treat. I'm a "make a batch of homemade cookies" type of mom. But Clark needed something a little bigger to feel special. Then I stopped at the office to buy hot lunch for all the boys because making lunches fell off my "to do" list too.

William's anxiety and labored breathing continued this morning. He also seemed quite pale, so I called the doctor. Again. After discussing it with the the surgeon, we returned to the hospital for a chest x-ray and I asked if I could draw labs for another CBC because I was suspicious. He agreed. We drove to the hospital, conducted business and headed home to wait for results and to get ready for a family picture.

Yes, I crammed in a family picture. I really wanted a family picture before the cycle of baldness. And the picture in front of the Disneyland flowers at the main gate does not count! Family pictures are a unique form of torture. And tonight was no exception. William was pale as a ghost, with barely enough energy to sit up. Wait, who am I kidding? He didn't even have than much energy because we had to hold him up most of the time and he laid back on the grass between groupings. The boys only wanted to run wild, do bunny ears, and do the opposite of whatever they were asked. And it was hot and muggy. Thanks to a great friend who was so patient and great to fit us in last minute!

After the picture, we wiped the sweat off our foreheads and charged home to get Ryan and the boys off to Camp Okizu. Camp what? Camp /oh-ki (like hi)-zoo/ is a camp dedicated to supporting families who have a child with cancer. During the year they have week-long oncology camps just for kids who have or have had cancer, SIBS camps just for siblings, and weekend camps for families. There are also camps dedicated to bereavement and teens or older patients and their families. The word on the street, or at least within the walls of the northern California pediatric oncology world, it is fantastic and run purely by volunteers and donations. This weekend we had hoped to attend as a family. Instead, William and I headed to the hospital for another CBC, chest x-ray, and transfusion. Perhaps we'll still make it up there on Saturday if we make it home from the hospital in the wee morning hours of Saturday, but more importantly, I hope Ryan and the boys have a great time.

May Sunday be a day of peace and rest.

Friday, October 7, 2011

Small Miracle and Tender Mercy

After much prayer and soul searching, Ryan and I decided on a chemotherapy option, a plan similar to what he's already gone through, but a slightly different cocktail since the cancer has already proven resistant to previous treatment. This option is also the recommendation of our oncologists. All our options are a bit of a Hail Mary, but every once in a while one is successful. Proceeding with this option doesn't rule out our other options nor decrease the quality or quantity of his life. We have felt impressed that we need to fight for now and demonstrate our faith by truly placing his life in God's hands. What better place could any of us be?

Chemotherapy began last night (Thurs) and will continue for 4 more days. We hope for discharge by Tuesday or Wednesday of next week. Then we'll wait for his lovely curly hair to slowly fall out again and the cycles of neutropenia to recommence. Ugh.

This morning we experienced what feels like the first good news, a small miracle, and a definite tender mercy. The final results of his bone marrow biopsy are negative. The bone marrow is not involved this time around. This doesn't change his course of treatment or prognosis, but it makes treatment a little less complicated with one less thing to battle. It is also a bit of a relief not to have to go through transplant again. He still has one batch of stem cells in the bank, but that may need to be used if he undergoes the MIBG therapy again.

William's buddies, James and Zak, both visited today and spent quality wii time together. I even enjoyed some adult conversations with their parents and even some fresh air while walking to Selland's. Thanks, Lisa, for the walk that didn't even come close to burning the calories we inhaled, but the sandwich was scrumptious!

No tears have been shed today ('cause we ran out over the past few days) and we are moving forward, taking one day at a time, and being grateful for that day.

Thursday, October 6, 2011

Deeper Faith and Understanding

It is days like yesterday we never anticipated facing as parents. We hear of days like this, but it is only in the Lifetime movies or in the New York Times best-seller books.

William received a new broviac. During the surgery, the fluid in and around his lungs was found to have greatly increased from what the CT scan revealed on Monday. The decisions was made to insert a chest tube while still under anesthesia to drain the fluid. While in the OR, over half a liter was drained, much to the astonishment of everyone. That is a lot of fluid in a tiny little chest. He has since drained more than another half a liter. He is still on oxygen as his breathing is still shallow, but he has perked up, although the chest tube is quite painful with any movement. He was pretty out of it after the surgery, and although responsive, he didn't open his eyes for nearly four hours. And he opened them only because his best friend, James, arrived. Oh, the magic of a good friend. The two of them just talked about the important things, like Angry Birds. James and Lisa kept William occupied while Ryan and I had "the talk" with the doctor.

William has at least 3 tumor masses. One in his tibia (near his ankle), one behind his sternum, and a very large one that takes up the entire left side cavity of his abdomen. His liver and intestines have all been pushed to the right side. On the scan, with my untrained eye, it appears much larger than the original mass. The bone marrow biopsy preliminary results are still somewhat inconclusive and additional staining needs to be done, but it appears that at least minimal disease exists. Regardless of what the final results reveal, due to 3 separate, non-contiguous tumors, it has metastasized and it can only do that through blood. He is undeniably in Stage IV.

The cancer is very aggressive and has come back with a vengeance. The doctor explained that it is growing exponentially and described it as "exploding". We saw the scans, and although we haven't read the report to know dimensions, it appears much larger than the original tumor.

Statistics are statistics and ours are far from in our favor, but we still believe in miracles even if the miracle is not what we envision. We have shed many, many tears, and pleaded in prayer for guidance. The depth of our faith is being tested in unimaginable ways. As Ryan and I make the decisions to determine the course of action and treatment, we have felt strongly that we have to put all possible outcomes in God's hands. We have the faith to do so, but it hurts like nothing we have ever felt. We wish we had easy, clear-cut options, but we don't. Both of us have had to go to the places no parent wants to go to and prepare ourselves for what true patience and trust in the Lord requires of each of us.

As we have pondered and looked for answers, I read Dieter F. Uchtdorf's talk, Continue in Patience, from from April 2010 General Conference. Here are some excerpts that impressed upon me the most.
"...patience is not passive resignation, nor is it failing to act because of our fears. Patience means active waiting and enduring. It means staying with something and doing all that we can—working, hoping, and exercising faith; bearing hardship with fortitude, even when the desires of our hearts are delayed. Patience is not simply enduring; it is enduring well! Patience is a godly attribute that can heal souls, unlock treasures of knowledge and understanding, and transform ordinary men and women into saints and angels. Patience is truly a fruit of the Spirit."

"Patience means staying with something until the end. It means delaying immediate gratification for future blessings. It means reining in anger and holding back the unkind word...."

"Patience means accepting that which cannot be changed and facing it with courage, grace, and faith. It means being “willing to submit to all things which the Lord seeth fit to inflict upon [us], even as a child doth submit to his father.” (Mosiah 3:19) Ultimately, patience means being “firm and steadfast, and immovable in keeping the commandments of the Lord” (1 Nephi 2:10) every hour of every day, even when it is hard to do so. In the words of John the Revelator, “Here is the patience of the saints: here are they that keep the commandments of God, and … faith [in] Jesus.” (Revelation 14:12)

Ryan and I can't change what we are facing, nor could we have prevented it. We don't know or fully understand God's will for William and our family at this time, but we will keep praying and fighting this battle until we do more fully understand.

Tuesday, October 4, 2011

Choosing Hope

Our hearts are breaking. Our minds are jumbled. Our emotions are fragile.

The cancer is back and it has progressed more than expected. William was admitted on Monday in Sacramento due to the need to move quickly. A CT scan revealed a new, large mass in his abdomen. Today he had a bone scan and bone marrow biopsy. Tomorrow he will have surgery to place a new broviac. After surgery, Ryan and I will meet with the doctors to discuss the bone scan results and hopefully have the preliminary bone marrow biopsy results. We will also be given the cold, hard, and unpleasant facts about his disease and our options. He will begin, again, a regimen of high-dose, aggressive chemotherapy.

William is in good spirits. He is very sad the cancer is back and that he has to get a new broviac. This time around feels particularly hard because we know what cancer treatment entails. He doesn't want to talk much about it. We suspect it will take him some time to process it all. His main question/request was if he could still have a big birthday party. I love the perspectives of a child.

At this point, few things, other than faith and hope and prayers, are in our favor. We still believe in miracles. It is a miracle he made it to this point. We still have deep faith in a loving Father in Heaven who knows and understands the plan far better than us. But this is still hard to wrap our heads around it as we thought he beat this monster. A good friend reminded us to choose hope. We do, but it a constant, conscious effort.

We are grateful for the few weeks we had filled with joy and happiness and celebration. Hopefully our buckets are adequately filled to weather the next stretch.

Friday, September 30, 2011

This is Not the Post I Planned on Posting

I was supposed to post Disneyland pictures, but the camera is at the hotel with Ryan and the four boys. William and I are in the hospital and have been since Thursday morning. Total BUMMER. Bummer. Bummer. Bummer.

We spent Saturday, Monday, Tuesday, and Wednesday at Disneyland and had a great time despite the expected tantrums, whining, and continual begging for overpriced Disney paraphernalia. Thursday morning as we were getting ready to check out of our hotel and head to Newport Beach until Sunday, William began to complain of severe chest pain and that his ankle which had been hurting during the week was getting worse. The chest pain was mild during the week and came and went periodically and I figured it was probably just sore muscles from the pushing and pulling motions while holding on on roller coasters. He never really complained a lot. His ankle was bothering him, but only appeared slightly swollen on Monday. We iced it each night and again, he spent most of the day in the wheelchair. I attributed the pain to possible overuse as he is just starting to be more active---maybe a possible mild sprain---he had no discoloration. However, when Thursday’s complaints seemed more intense, I called UCSF since chest pain isn’t something to really brush aside. We were sent to the ER at Children’s Hospital of Orange County (CHOC). I was already familiar with this hospital since it was part of our emergency plan, if needed.

Blood labs quickly determined anemia. He had low hemoglobin and needed a transfusion. Then he spiked a 102.5 degree F temperature. That earned us an official admission. 24 hours later, and after many labs were drawn trying to determine the source of the fevers, elevated levels of something in the blood indicated his body was fighting something somewhere. But what? And where? The ankle began to be a focus of attention. An x-ray revealed a possible fracture on the tibia, but was somewhat inconclusive. The orthopedic doctor ordered an MRI to rule out a bone infection, osteomyelitis. His MRI was at 8pm Friday night. At about 11pm, as Ryan was about to leave after finally bringing me a change of clothes (I had been suffering in a skirt for two days!) the orthopedic doc came in our room to inform us that the MRI showed a very obvious mass in the left tibia.

Our hearts sank. Really sank.

Mass is now an official bad word in our house.

A biopsy needs to happen to determine what it is exactly. But the doctor feels like it is best to begin this new process at our primary treatment center as soon as possible. He was discharged at 1pm today and we will head back home tomorrow and check in on Monday to the hospital at UCSF. There are a lot of unanswered questions and lots of phone calls to be made to coordinate appointments and treatment. We are trying not to jump to any conclusions and take each day one at a time.

Today we are going to spend this afternoon together at the beach, cherishing the good moments and making happy memories.

TO THE BEACH.....!!!

Monday, September 12, 2011

Farewell, Broviac

You will not be missed.

It is done. It is out. Hooray. Hooray. Hooray.

Sunday morning the doctor removed William's broviac in a quick procedure. The black line on the tubing is a thread that was about 1/4" outside his body. The red mark is a cuff that was just under his skin and secured the broviac in place. The surgeon made a small incision to his existing hole to detach the cuff and then pulled it out. I am amazed at the length of tube in his body. It wasn't what I had pictured in my mind. No stitches were used to close the wound. A simple dressing was put on it and we were told the skin would seal in about two days and at that point he could finally swim.

Due to the infection, he has to remain at the hospital for 48 hours after the procedure to receive I.V. antibiotics. He now has an I.V. in his hand and is not a fan, but it's better than the alternative. He will hopefully be discharged on Tuesday.

Let the countdown to a lot of splashing begin!

Saturday, September 10, 2011

Going Out Kickin' and Screamin'

That would be me. Not William. That boy is so patient and calm and resilient. The light at the end of the tunnel is just a little farther than we thought and I'm frustrated. And we're still waiting for the fat lady to show up and start singing.

Saturday, 7:00 am, the call came from the hospital. Blood cultures positive after 24 hrs. William must come back to be admitted. Darn it. But I had slept restlessly anyway because the 24 hour mark was at 3 am and I was expecting a call at 3 am with a positive culture finding. That's the realist in me.

The biggest bummer of this whole ordeal is UCSF gave William 4 tickets, 7th row, to the Giants vs. Dodgers baseball game tonight and he had invited 2 friends to go with him to celebrate finishing his treatment. As I drove to the hospital I thought, "They can pull the broviac today, give him a dose of antibiotics and send him home on oral antibiotics and since it's early, there may be a chance he'll make it out in time to make it to SF for the game. Or maybe they'll give him a dose of antibiotics and let him go to the game and come back tomorrow." Then I realized how completely ludicrous those thoughts were because nothing moves in a timely, predictable manner in a hospital. A positive culture typically means 10 day of I.V. antibiotics and even if I could convince them that I could administer them at home, he is usually kept in the hospital until the cultures are negative or he is fever-free for 24 hours. Oh well. Sometimes I need my thoughts to entertain me and keep the optimist in me alive.

After the doctor's here consulted SF, it was decided any scenario that got him to the game was not possible. I get that. His safety/health isn't worth unnecessary risks. The risk of sepsis (blood infection) is high, especially with a broviac. We were informed his broviac couldn't be removed until Monday at the earliest because the low staffing on weekends and the surgeons typically only do scheduled weekend procedures and emergencies. Evidently my emergency is not theirs. Home antibiotics aren't possible because the home health agency is closed on the weekends and wouldn't be able to complete the order for home meds until Monday. I broke the news gently to William. He got teary, but I promised him his dad would take him to another game, but the seats may not be as good!:) He's so good.

Oh, and did I mention his broviac could have been removed last week? Due to the Monday holiday last week, the time slots for oncology procedures were full from those unable to be performed on Monday. We have this bad luck thing with weekends and holidays. And just when we thought it couldn't get worse, we got stuck in the quad room. Ugh.

And just when we thought it couldn't get worse than that...I'll spare you the details on the less than kindred spirit roommate situation. Let's just say that I'm glad the Benedryl knocked out William for several hours so he missed the graphic language lesson. I even tried plugging my ears.

Now, I'm happy to report some good news. The wonderful, understanding oncologist, in her infinite wisdom, thought to mention William's case to the surgeon today so she could get him on her radar for a possible Monday procedure. The surgeon's reply went something like this. "Oh, I'm not busy this weekend. I'll do it tomorrow. " She then stopped by our room and asked, "How does 9 am sound?" Beautiful. Marvelous. Perfect. Thank you. Thank you. Thank you.

William will have a peripheral line placed to continue I.V. antibiotics for 1-2 days. (We're hoping for one day). Then he can be sent home on oral antibiotics since his risk of infection is much lower without his broviac. So here's to hoping for a Monday night or Tuesday discharge!

William can't wait to run his hand over his chest and not feel any tubes, soak in the tub up to his neck, and jump in a swimming pool. I can't wait for bedtime to come and not have to flush his lines, do a dressing change, or change his caps. Then maybe I'll do less kicking and screaming and more singing and dancing.

Friday, September 9, 2011

It Ain't Over 'Til the Fat Lady Sings

Wanted: One singing fat lady

William has been more tired this week than I remember after past treatments. It's hard know whether to attribute this to his treatment, school, or a little of both. He has also had pain in his sternum and shoulder. This pain is likely due to the GMCSF injections he has been getting nightly to stimulate white blood cell production so his body can attack any cancer cells that the antibody treatment flagged as bad. Bone pain is a common side effect. So are fevers.

Last night he spiked a 101.4 degree F fever which necessitated a call to UCSF and confirmed the assumption that we were headed to the hospital to get a dose of antibiotics. William and I headed to the ER around 11:30 pm. It is a sad commentary on this lifestyle when I was actually glad it was happening in the middle of the night because it created the least amount of disruption to our family. And it's pathetic that I didn't even pack a "just in case" bag since I was that confident of exactly what the treatment plan would be. I just grabbed my purse, book, phone charger, hospital notebook/briefcase, and William. I really shouldn't be so confident. Have I really not learned that yet?

Thankfully, as expected, labs and blood cultures were drawn and a dose of antibiotics was given. The best part was our favorite nurse, Lynn, was the charge nurse on the oncology floor last night. She came to the ER and took care of us the whole time since the ER was a little busy and they also aren't trained for dealing with broviacs. Plus, she was stuck on one level of Angry Birds and needed William to help move her progress along. It was a hard sell to get him to agree to that! ha! Thanks, Lynn, for the great company and personalize treatment! It was like having our own private nurse! We all need one of those. Especially in an ER!

We returned home around 3:30 am and I counted my many blessings that it was Friday. We are going to have a low key day around here.