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 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.