Delayed

Tuesday was a long day in the car, traffic, and San Francisco. William had another bone marrow biopsy and aspirate along with lots of blood drawn as part of the next phase of treatment. A lot of the blood and bone marrow samples will actually be used in ongoing research of neuroblastoma cancer. We felt strongly about participating in the studies since it only required blood and bone marrow, both of which were being sampled that day anyway. We are so grateful to the many neuroblastoma children before William who have paved the way for us to have some of the newest treatments available today.

William's recent stint in the hospital was an obvious hot topic in SF. After reviewing the timing of his current antibiotic treatment and the scheduling of the antibody therapy, it was decided to delay the antibody therapy by one week. I suppose we expected it so it didn't seem like such a shocking blow, but it was just an ever constant reminder that we must always schedule our lives in pencil. The main factor contributing to this decision was that some of the common side effects of the treatment are similar to the infection he is recovering from and the doctors want to make sure he is fully recovered so the culprit of any side effects is obvious. Makes sense.

The good news is the antibody therapy schedule will still not interfere with our family reunion/vacation to Newport in June! [Happy dancing and sighs of relief]. That was really the only thing that worried us. I know, priorities. But we all need to escape some reality from time to time.

When we got home from SF last night, I felt emotionally and physically exhausted from the hectic ups and downs of the past week. I looked at the huge pile of clean laundry on my bedroom floor that needed folding (it's been there since Friday) and just climbed into bed and ignored it. I know constant flexibility is nothing too new for us, but we were becoming accustomed to a slightly less unpredictable lifestyle. William was worn out too. The anethesia probably had a role in that, but he made a funny request as we drove up to the house. "Mom, when we get home, I'm going to go find my new tennis racquet and then sit on the couch and just look at it." And he did. Funny boy.

Antibiotics at Home

Sunday afternoon during church, William texted me to announce his negative blood culture result. (This is a good thing). However it was just the 24 hour culture. We needed the 48 hour culture to be negative as well to be able to start planning a date to come home. I was relieved, but still anxious. After church, we had a quick Easter egg hunt in the backyard. It just wasn't as fun without William and Ryan there. For me, it was more of a chore to get it done. I was so exhausted Saturday night after leaving the hospital and Sunday wasn't much different, so I nixed any traditional Easter meal and made crepes. I was temped by cold cereal, but the guilt got me just a little. I didn't even get out the Nutella [Gasp]. I told the boys their only option was syrup. I was that tired.

Today I packed another suitcase to relieve Ryan at the hospital. But I packed not knowing if I'd be home in 1 day or 12 days, pending a possible transfer to UCSF to continue his antibiotics and then the antibody therapy. Ryan repeated our plea to the doctor this morning that we could handle IV antibiotics at home. The doctor agreed as long as the pending culture was negative and UCSF agreed.

William arrived home late this afternoon! He and the boys bolted from the car to find their tennis rackets and ran out into the front yard/street (we live on a court) to play. It seemed wrong to go from laying in a hospital bed, unable to leave his room, to running all over the place outside. It was beautiful! Even the home health nurse commented how good he must be feeling when she came over to show me how to administer the antibiotics with a syringe pump.

William and I head to SF in the morning for another bone marrow biopsy and other labs. I think I'll love the drive even more knowing we get to return home in the evening.

Getting Too Comfortable

Just when we were settling into some warped sense of normalcy, William spiked a 101.1 degree temperature yesterday afternoon. I took it multiple times with varying thermometers in various places. I like to think I'm thorough, not desperate. There was no way I could pretend he was just extra warm from laying under a blanket. (I made him remove that and sit for a bit before rechecking his temperature). He was also unusually lethargic. I made the call. I got the expected answer. I obeyed. Darn it!

When William and I arrived at the hospital his fever was gone. Darn it! But I did a little self-talk to reassure myself that I did the right thing in bringing him in. Thankfully the doctor gave orders to treat him as outpatient since he was not neutropenic. Labs for blood cultures were drawn (to detect an infection), a round of antibiotics were administered, and we were sent home around 11PM. Yippee! I celebrated with cinnamon twists from Taco Bell on the way home. William slept.

William went to work with Ryan today because William had his MIBG scan at the hospital and with the boys on spring break it was just easier for Ryan to take him today. And it was a good excuse for Ryan to come home a little early too. I spent the day on the hunt for paint colors for a boys bedroom while towing around 4 boys that really needed to run at the park. For those that know our home, the Winnie the Pooh mural from the previous owner is finally being dealt with! With all the time not spent in the hospital, Ryan and I are starting to get the projecting/DIY itch. I planted our garden a couple weeks ago and planted flowers in the front yard this week. I also painted doors and door casings on new doors we had put in during a minor remodel 2 years ago, but never got around to painting. When Ryan got home with William, we start putting up paint swatches. Then the call came. The blood cultures came back positive for infection and William needed to come back to be admitted to the hospital. We packed up the paint for another weekend and packed the suitcase.

William has never had a positive blood culture for all the countless times he's been hospitalized with a fever. I suppose this could be a rite of passage---one thing we hadn't experienced yet. Perhaps we can gain increased empathy with this....

It's been 2 months since William has been inpatient. That was when he was discharged after transplant in San Francisco. It's been since November 21 when he was inpatient here in Sacramento! That is amazing, but it doesn't feel good to be back. However, it is nice to see our nurse friends that are so great. Oh, and one perk of being a bone marrow transplant patient is a private room. It may be the only perk, but it's a huge perk!

I know very little worth mentioning about the infection and the length of this stay yet. Tomorrow morning I will smother the doctor with my questions. The nurse said there is a chance he'll only be here 4 days, but it could be 10. My problem with all that is on Tuesday William is supposed to be in SF for a bone marrow biopsy where additional samples are to be drawn as part of the antibody therapy. Also, he is supposed to be admitted to UCSF a week from Monday as part of the antibody therapy. This pesky infection is putting a wrench in my nice little schedule I thought I could schedule. I also worry about the timing of the antibody study being thrown off. I worry about... stop. I can't worry about what I can't control, but I do.

The other bummer of the day is that Ryan and I were planning on surprising the boys by taking them to the drive-in tonight to see Rio since William can't go to theaters. Oh well. We're flexible like that.

Side note: The lab results for labs drawn in SF earlier this week to see how William's immune system is recovering won't be ready until Monday. The doctor didn't think it was likely that the restrictions/precautions would be lifted until the 6 month mark (end of July).

Pick Up the Pace

I suppose I'm due for what is becoming my weekly post. Rest assured, the pace is about to pick up. The brief hiatus we have just enjoyed ends tomorrow. It was only a week, but a calmer than usual week. William and I head back to San Francisco bright and early in the morning to meet with the BMT (bone marrow transplant) team. William will have labs drawn to check the function of his B and T cells. This is the cell development that keeps him in isolation and out of public places. In talking with the nurse this morning, I learned that it is possible that the cell function has recovered enough to lift all restrictions. They are looking for a series of specific numbers/levels that signify his recovery. I also clarified that it is an all or nothing scenario: all restrictions remain or all restrictions are lifted. From the beginning we were told isolation would be 3-6 months and to plan on 6 months. So we are. Tomorrow is just the 3 month mark. We have no expectations, just hopeful anticipation.

Thursday and Friday keep us in Sacramento for an MIBG injection and scan and Echocardiogram. Monday has a CT scan and Tuesday sends us back to SF for another bone marrow biopsy. Then William gets a few days of break before check in on Monday in SF for his 5 day stay for the Antibody therapy. (see previous post for details). It's all good and one day I'll miss this part of my children's childhood. No, I won't!

On Tuesday mornings I participate in a phone-in support group for parents of recent BMT children in SF. It's an interesting experience and takes some getting used to the conference call environment. Each time I participate, I feel a little awkward as most of the family situations are ones I can't relate to. I am often reminded how fortunate we are with all the love and support we receive. We all have trials and struggles. Some are a result of our own poor choices, but others are simply unavoidable parts of life that can only make us stronger if we keep the right attitude and perspective. At the end of the day, I'm glad I have the trials I have and not someone else's. Many of the parents are single parents, the ages of the children varies from a few months to 17 or 18 years old. Some had the transplant due to cancer, some for other diseases. For one mother, this is her second child with cancer and the first one lost its battle. What amazes me is despite our various circumstances, there is an overwhelming sense of hope and resilience in these parents. As hard as life may be right now, it is only temporary. The sacrifices and struggles we face on a daily basis make the journey and anticipated end goal, short-term or long-term, so much more worth it.

Antibody Overload

The week without daily radiation appointments has been great, except for the horrendous allergies. All the boys, including Ryan, have been suffering. I'm feeling dandy. William has been the worst with swollen eyes and dark circles under them and a runny, runny nose. Of course we've had a few panic moments that he was getting sick, but no fevers yet and allergy meds are helping.

The past few weeks have also been frustrating because our clinic visits felt unproductive and unnecessary. Questions about upcoming treatment weren't being answered by our local oncologists saying it was San Francisco's call and the BMT (bone marrow transplant) team was saying they were no longer really in the picture since William is almost 3 months post-transplant and we hadn't met with our SF oncologist yet to consult and consent for the next phase of treatment. With multiple different treatments in both Sacramento and San Francisco, we've been under the care of four different teams of doctors so it sometimes gets complicated keeping track of who dictates what. We've recently felt in limbo, not having a clear plan in place, yet knowing more treatment was coming soon, and feeling glad, in a weird sense, that no one seemed very concerned about William's course of treatment. To us that means he's become a boring case. And that's a good thing.

Today, the much anticipated meeting with Dr. DuBois, our SF oncologist, to discuss the antibody therapy finally happened. Ryan and I walked out of our meeting with him with an overwhelming sense of peace, happiness, and direction. We have answers and a plan and most of all, a doctor who said he's taking charge of William's care starting today and he would take care of notifying all parties involved. William can stop taking 2 of his medications, he doesn't have to go to clinic visits for a couple weeks, I can stop drawing blood for labs and driving them to the hospital twice a week, and all the scans and test will be scheduled and completed in SF in a couple weeks, right before treatment begins. Life just feels slightly simplified for the next week or so.

What is the next course of treatment?

• Chimeric Antibody 14.18 (Ch 14.18) with GM-CSF, IL-2 and Isotretinoin

What is that?

• It is a clinical trial for high-risk neuroblastoma children which has been going on for awhile and is now waiting on FDA approval.
• It is now the new national standard of treatment for high-risk neuroblastoma patients following bone marrow transplant and radiation.
• The antibody (Ch 14.18) and Isotretinoin are given in series over the course of 6 months.
  

How is this study different or advancing current high-risk neuroblastoma treatment protocol?

• Standard treatment is to take the drug, isotretinoin (Accutane or 13 cis retinoic acid), by mouth for 6 months.
• A recent study compared the new experimental regimen (antibody therapy) to isotretinoin alone and found that the experimental treatment worked better than standard treatment to help get rid of any remaining neuroblastoma cells.
• Two years after treatment, 66% of patients who received the antibody therapy were alive with no signs of cancer, compared to 46% of patients who received the standard treatment.

Why does William need this after all he's gone through and the tests and scans finally show no evidence of disease?

• William's disease is hard to treat and often resistant and needs very aggressive treatment. His diagnosis of "High-Risk" neuroblastoma is in part due to his age at diagnosis (rare to be over 5 yrs old), it had already metastasized (spread) at diagnosis, and during the course of treatment, the cancer cells were resistant, needing 2 additional rounds of chemo and MIBG therapy and cancer cells were still present right before transplant.
• The technology and accuracy of the tests and scans to detect cancer cells has limitations and may miss some microscopic cells. One active cell is enough to grow the cancer again. This treatment focuses on the microscopic cells (minimal residual therapy).
  

How does this therapy work?

• The human immune system contains many different antibodies to attack germs, bacteria, etc. However, because cancer is produced by the body, it does not recognize cancer cells as "bad".
• Ch 14.18 is a monoclonal antibody, meaning a protein made in the lab, designed to attach to specific targets on cancer cells. This particular antibody is part mouse, part human. Yes, we agree it sounds crazy! We are promised William won't grow a tail or whiskers.
  
• Ch 14.18 is designed to attach to neuroblastoma cells. When it attaches, the body's immune system is stimulated to attack and kill the neuroblastoma cells. (It flags the neuroblastoma cells as "bad")
  
• William will be infused with this antibody for approximately 10 hours a day for 4 days at UCSF. This will occur approximately once a month for five months.
• The cis-retinoic acid will also be administered during these months according to the trial instructions. (I'll spare you the boring details).
  
• The sixth cycle will only be the oral cis-retinoic acid which is administered at home.

Side Effects

• There are lots that are similar to all the side effects he's experienced through this whole process. (again, I'll spare you the long list of likely, less likely, rare but serious).
  
• Pain, an internal aching, is the most common with the antibody infusion and it will be carefully monitored with the aid of a PCA button (patient controlled analgesic). If the pain is too much or other side effects arise, the infusion will be paused until the pain is properly controlled. Once the infusion is finished, the pain immediately ends.

When do we start?

• Next round of hospitalization begins May 2nd.

Good News

• William will be able to go on our annual family reunion to Balboa/Newport Beach in June!
• He'll have to stay out of the water, sand, and sun, but we'll all be there together, on vacation!
• He'll be admitted back to the hospital the Monday after we return.
  

Closing Thoughts

• Ryan and I feel confident and peaceful about pursuing this course of treatment. We feel blessed and fortunate to have these cutting edge treatments readily available to us within feasible proximity to our home. In the end, we will know we treated this cancer with everything available from the beginning.
• We are so grateful for the brilliant minds that continue make progress on the neuroblastoma front and the brave children that fight the hardest battles.
  

There's A Party Going On Right Here

WILLIAM FINISHED RADIATION!

So we celebrated with food! It's what we do. Besides, William lost a pound last week (totally normal for appetite to decrease during radiation). The rest of the boys requested that In 'N Out not be an option. Oh, what does that say about our lives? So William requested a marinated flank steak, rosemary-garlic potatoes, broccoli, and chocolate cake. I agreed and it was all a success due to the unfortunate lack of leftovers. I didn't take a picture of our dinner because it disappeared too quickly. However, I did confirm that layered cakes and I don't mix. No matter how I try and trim and level, my top layer always begins to slide. Oh well, that's why I have boys. They will never fully appreciate the cosmetic appearance of my cakes. After struggling with the "Leaning Tower of Cake", I bagged the idea of piping a radioactive symbol on the top. We went with the always pleasing glow sticks!


In other exciting news...

We'd like to thank the amazing Hakes family for providing a good workout for William and a lot of fun for all the boys---all 6 of them! It snowed! Right in the middle of our front lawn. Thanks for the laughter!



Yes, we have a trampoline in our front yard.