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!

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.

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!

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.

Sunday:

• 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.

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.

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.