Cancer Sandwich

I wanted to give a brief update on my dad, as I know that many of you are eager for news on him as much as Andrew. At this point, he has been diagnosed with Epithelioid Angiosarcoma, which is extremely rare. It is located in his neck and has invaded the bone there. We have consulted with doctors at MD Anderson, City of Hope and Sloan Kettering, as well as his doctors in Lubbock, and while they are offering suggestions as to how to perhaps slow the cancer, none are offering anything curative.

Based on that, my dad has decided to forgo treatment. He seems to be making the decision with a clear mind and, I have to say, knowing my dad, this is not a surprising decision on his part. In fact, even while we were consulting with the various doctors around the country over the last couple of weeks, I suspected that he would decline their suggestions. I don't know with any certainty what the rationale behind his decision is, but I tell myself that it is based on his desire to live, not simply be alive. I assume that over the years at the hospital, he has seen too many patients that were kept alive well beyond a worthwhile existence. It comes down to quality of life and my dad recognizes when he will not have any.

As much as I can understand and even admire my dad's decision--to face this on his own terms--for its courage, I have to admit that it is extremely difficult to accept. After the past year with Andrew and all of the treatments that he has endured, the idea of not fighting is completely foreign. I do recognize that there is a difference between pediatric and adult cancer, but it is hard for me to apply that to my own dad.... But, he seems to have found his peace with this, so I must somehow find mine. Still, trying to reconcile my feelings as a father who has been taking care of his son with those of a son wanting, but not being able, to take care of his father is awkward and complicated.

We will be going out to visit my dad and my mom around the New Year's holiday. We want the kids to be able to see him and have some fun with him while he is still feeling well. Perhaps he'll gain some inspiration from Andrew--after all, he's a hell of a grandkid.... I look forward to seeing him and sitting with him and, hopefully, talking. A lot. There are suddenly so many things that I need to know from him and I am hoping that he is up to the task of sharing with me.

Paul

Over The Hump

Three out of five...we're more than halfway there. Andrew and I were in the hospital this past week, where he received his third round of antibody treatment. I have to say, it went quite well. Granted, at this point, I am pretty de-sensitized to most things (for example, a blood pressure reading of 68 over 18, where I tell the nurse to "just let it ride, he'll be fine"), but overall, it was a pretty uneventful week. The best way to judge a hospital stay is by how many doctors come by the room and by whether the doctors that do come by let you go home on time. I am happy to report that on both counts we did extremely well: Very few doctors and released right on time. We'll definitely take more of those stays....

So, we got home on Friday and our big focus now--as it should be--is Christmas. Lucia and Andrew are getting pretty wound up at this point (as am I, if I am being honest) and cannot wait until the Big Day this week. They have been diligently keeping track of the countdown on their Advent Calendar and they are about to burst over the anticipation. Certainly, we are all grateful to be home this week (and next), where we can celebrate the holidays together as a family.

I do have to comment that what was eventful about this past week was the incredible outpouring of support for Andrew's Giving Tree at Lunch for Life. Andrew is already on his third lap of that tree and we are sitting here in awe of the family and friends and friends-of-friends and even not-even-friends that we have. It is a truly humbling thing to watch. Thank you to each and every one of you; we are so honored and proud to have you involved with us in this.

Next hospitalization: The week of January 5th. Until then, Merry Christmas and Happy New Year! Please be safe and enjoy your holidays.

Paul

Time To Give

It's December. The holidays are upon us. What a year. We sit here taking stock and we have so much to be thankful for, yet so much to fear. So much behind us, yet so far to go. As Andrew's treatment starts to wind down and, dare we say, become routine, we have the luxury, but also the responsibility, to turn our attention to what else we can do to help fight this disease.

As you know, we posted previously about the lack of attention and funding that pediatric cancer, much less Neuroblastoma, receives ( http://whatsnewwithandrew.blogspot.com/2008/09/two-posts-in-three-days-what-is-going.html). We won't belabor the point. What we do need is action. And it's amazing how easy and even fun it can be to contribute. Perhaps more important, the smallest donation truly makes a difference.

We have set up a Giving Tree for Andrew through Lunch for Life.

http://lunchforlife.org/family/givingtree.aspx?cid=588

The idea behind Lunch for Life is that if we all give up the equivalent of lunch for a day--$5--we can raise a substantial amount of money, which is used directly in the funding of Neuroblastoma research and trials. Bottom line: $5 will help save a child's life. The fun part of the Giving Tree is that for each $5 donation in Andrew's name, he gets an ornament on his tree. Give $10, he gets two. $25, he gets five. Once the tree is filled, he gets a present under it. It's quite an achievement to get a present under the tree and he gets rewarded with a real present, which has been donated. There is also a way for Andrew to receive double ornaments: Once you give, you receive a receipt with a Giving Tree Code on it. That code can then be used with another donation (feel free to forward your codes), which earns Andrew twice the ornaments. As Obama would say, Can we fill it? YES WE CAN!

Certainly, if you are able to donate more than $5, we are exceedingly grateful, but, again, any amount helps and is appreciated. Another approach you can take is to give up lunch on a regular basis--one a month, one a week?--so that you're donating $5 at a time, but it's really adding up in the long run.

In the interest of full disclosure, we should point out that there is something about a drawing for a Disneyland Dream Vacation for a child and his/her family. Basically, each donation in Andrew's name gets him an entry into the drawing. This has the potential to make Lucia the happiest kid on earth. No pressure, though....

To get everyone started, we have primed Andrew's tree with some ornaments and are listing his Giving Tree Code below for people to take advantage of. Please help fill up Andrew's tree:

• Please go to https://www.lunchforlife.org/Donate.aspx
• Make a donation using Giving Tree Code 31732.

You can view Andrew's tree here: http://www.lunchforlife.org/family/givingtree.aspx?cid=588

Thank you for all your support. We want to wish you all a wonderful and enjoyable holiday season. Take care.

Love,
Paul & Cynthia

Losing My Mind

So I thought that I had posted last week letting everyone know that we were discharged last Saturday and having a nice Thanksgiving week at home. But I checked the blog and I didn't. In my mind I had, or at least I had the intention of doing it. Sorry.

Andrew was discharged last Saturday. The rest of the week of treatment was a little scary. On Tuesday, he did suffer a great amount of pain. The worst thing in life is watching your child screaming out in pain. It was the worst pain he has felt throughout this entire process. He received more morphine and after an hour or so he was drifting off to sleep. Wednesday was pretty uneventful thankfully. Thursday however was a different story. His entire face swelled up including his throat. You know it is bad when the PICU doctor decides to sit in the room with you for 3 hours just in case your child stops breathing. But after lots of benadryl and some epinephrine, his swelling went down enough that the PICU doctor thought it was okay to just monitor Andrew from the desk outside his room. We were scheduled to go home on Friday but because of the swelling on Thursday they wanted to monitor Andrew for one more day. So we stayed until Saturday.

Andrew was happy to be home. He went back to school on Monday just in time for the Thanksgiving party. His favorite part of the meal - the whipped cream. The rest of the week was nice and relaxing. Since this was a two-week round, Andrew was pretty weak from being in bed for so long so we tried not to do much. On Thanksgiving day, we went to the auto show and saw the Ferraris and a Le Mans race care. Andrew liked that. We then headed to my parents' house for dinner. We had so much to be grateful for this year- for Andrew and of course for all our friends and family who have been unbelievably supportive throughout this whole year. We could not have made it through without you. So thank you for being there for us and helping us get through this.

As for Paul's dad, the cancer diagnosis has come back as Epithelioid Angiosarcoma. It is a rare cancer and because it is so rare, there is no treatment protocol, so we are still researching and getting third and fourth opinions as to next steps. PawPaw is still in the hospital recovering from his surgery and regaining his strength. The good news is that they are planning on discharging him in a couple of days. I'm sure he will be happy to be home again. Please continue to pray for PawPaw.

Andrew is back on his oral chemo and this time is having no problems swallowing the pills! Yeah! He doesn't seem that moody this time either. In two weeks, he heads back to the hospital for just a one week stay for the antibody treatment. Because of continued staffing issues on the Peds floor, we will be back in the ICU for the week. One final plea - Andrew is still in need of blood transfusions (and will likely have one when he goes back in the hospital in two weeks) and we have no more blood banked at City of Hope. So if you have any time to go to City of Hope and give blood, we would greatly appreciate it. No need for platelets at this time.

We hope you had a wonderful Thanksgiving!

Day 1 is Done

First a quick update on PawPaw (Paul's Dad).... The pathologist is not sure what it is. While they say that the sample looks "poorly differentiated" (which in cancer speak is very bad), all the other tests are "inconclusive." So the doctors are sending the sample and the stains out to the Mayo clinic for a second opinion. So we still don't know what we are dealing with. We are hoping to hear back from Mayo tomorrow. Please continue to keep PawPaw in your prayers.

As expected, yesterday was an up and down day for Andrew. He flirted with low blood pressure all day but actually didn't need any support! But he did end up getting a fever, a rash on his face, torso and groin area and he had some vomit. All normal side effects expected from the drugs. He also experienced some pain but the pain was easily controlled by bumping up his pain meds. He slept almost all day and woke up for a couple of hours while Uncle Vince visited. He quickly perked up when he saw Uncle Vince because he knows Uncle Vince brings him orange tic-tacs. Like three boxes of orange tic-tacs (has anyone seen the movie Juno?) And last night Uncle Vince also brought Andrew airplanes. Uncle Vince is officially Andrew's new favorite person (and mine because he brought me some Yang Chow for dinner)!.

We are about an hour in on today's medication and so far so good. My dad is here today (with more airplanes for Andrew!) so Andrew has been sitting up and playing this morning. Paul is also coming home today so we are all excited to have him back home.

Home

Andrew and I made it home early yesterday evening. Other than some diarrhea and missing his dad, he is doing great. We are scheduled to check back in to the hospital tomorrow evening for another week of treatment.

As for Paul's dad, the news is not good. It is cancer. The doctors are not sure what kind. They actually think the spots in his neck are not the primary site but the secondary site. They are not sure where the primary site is located. We should know more on Monday once the pathology is completed. We are completely devastated. I'll update the blog once we know more.

Week 1 of Round 2 of the Study is Almost Done!

Yes, I know it has been a couple of weeks since the last update. I'm sorry. Things have been relatively normal at home. Andrew has been back to school (3 days a week) and is liking it. His first course of oral chemo thankfully ended Monday. It was a bit stressful - the medicine only comes in pill form so we had to teach him how to swallow a pill. We taught him using tic-tacs and that worked quite well. However, when we got the pills one of them was actually bigger than a tic-tac and he had problems taking it. He threw up twice, gagged A LOT and generally was not happy about it. But after the first week, he got it down and was much better about taking them (and required less bribes).

Andrew checked in to the hospital this past Sunday to begin Round 2 of the clinical trial and to have surgery Monday morning (which went well) to replace his single port with a double port. After Round 1, it became clear to us that he needed additional access points so we decided this was the best way to go. Round 2 and Round 4 are actually two-week rounds (although we do get to go home during the weekend). This week he received IL-2, which he didn't receive during the first round, continuously for four days. So far it has been pretty unremarkable. He flirted with fevers all week long (which is expected) but Tylenol is given around the clock and has controlled the fevers so far. He actually has been alert, eating well and in a good mood all week. Some of his chemistry has been a bit off but again, all expected and manageable. One odd complication that arose is that my mom developed shingles and might have possibly exposed Andrew to them. So we were moved to a negative pressure room, are now not allowed to leave the room and Andrew had to start anti-viral medication. The good news is that Andrew should have presented with chicken pox by now if he was infected - but the infectious disease people still wanted to take these precautions just in case. The Il-2 infusion ends tomorrow around noon and the plan is to discharge us shortly after that so we can get in a good 48 hours at home before we need to check back in on Sunday for week 2. We are grateful that it has been an ok week as next week will be the antibody treatment (along with another continuous 4 day infusion of IL-2) that was really tough on Andrew.

In the not so great news category, Paul's dad has been in the hospital since Monday morning. Tests have shown that he has excess fluid and some bleeding in the brain and some "spots" have been found on his vertebrae. The doctors do not know what has caused all of this - they initially believed he suffered a stroke but since the bone scan showed the "spots" they are not so sure now. Tomorrow morning (Friday), he will be having brain surgery to relieve the pressure in his brain, along with a spinal tap and biopsy on the spots. Paul and his brother John are with him in Lubbock right now. We ask that you please say a special prayer that surgery goes well tomorrow and that we will have start to have some answers soon. We will keep you posted.

With love,
Cynthia

P.s. big thank you to Aunt Cassie for taking care of Lucia this week while Paul is in Lubbock and I am at the hospital.

Make-A-Wish

Andrew was discharged yesterday and we made it home by the late afternoon! We weren't sure if we were going to get discharged, because Andrew got fevers both Wednesday and Thursday nights. They started him on antibiotics--just in case--and they drew blood cultures. The cultures were negative and since the doctors were pretty sure the fevers were most likely associated with the antibody treatment, they let us go home.

Day 4 of treatment actually went well. The day started out with a visit by his favorite fellow patient, Kelsy. Kelsy has leukemia and Andrew and Kelsy have become fast friends. Kelsy, who is 13 and the cutest girl ever, brings treats for Andrew every week at clinic. So, of course, Andrew LOVES her. Since Andrew didn't sleep Wednesday night again (the ICU and sleep don't mix), he was very cranky Thursday morning. That is, until Kelsy walked in. She brought airplanes and rice crispy treats. Andrew was in heaven. Then grandma visited with a new Airbus A380 (because he doesn't already have two other A380's at home) and a set of four more planes. In short, he was surrounded by his favorite ladies on Thursday. And a good time was had by all....

Treatment started shortly before noon and went off without any hitches. Andrew did not require any blood pressure medication (a first!) and did not require any tweaks to his pain meds either. He slept the afternoon away without having any noticeable pain. I was shocked, but obviously thrilled. I guess we finally got our Groundhog Day right. He did end up getting a fever. And vomited once. And has some diarrhea. But otherwise he was fine (yes, my threshold for "fine" is quite low these days).

Andrew woke up on Friday in a good mood. We painted a wooden airplane that the recreational therapist had given us and we did some coloring pages as well. And he painted his toes. I knew he was well enough to go home at that point. He still has some diarrhea and is not eating much, but we are forcing liquids down him.

This weekend is all about recuperating, though we do have a couple of items on our calendar: We had Lucia's school fair today and, tomorrow, Make-A-Wish is coming to talk to us about granting Andrew a wish. I'm not sure what he will wish for, but I won't be surprised if it involves Formula 1 racing, which along with jets, is his latest obsession. If I am being honest, any car racing--Nascar, Indy, Lemans, Hot Rod, etc.--will do, but Formula 1 seems to be his clear favorite. Ferrari Formula 1 cars, in particular. I, myself, find that I am a Lewis Hamilton fan, so I root for the Mercedes Maclaren team; Andrew doesn't like that so much. Yes, we have become a family that watches the Speed network (the things we do for our kids!). The sad thing is, Paul and I have caught ourselves totally engrossed in watching the Formula 1 races. The last one is next weekend in Brazil and Lewis Hamilton is leading the point race, so I am waiting to see if he can hang on to win for the season. Meanwhile, I have been talking up the Monaco Grand Prix and showing Andrew races on YouTube. The other day, I asked Andrew if he wanted to go to Monaco to see the Formula 1 race and he said "or we can go to the Long Beach one." Um, Mommy did not go through all of this cancer stuff just to go to Long Beach. Nooooooo!!! Oh wait, right, it's Andrew's wish, not mine. So, I reminded him that if we went to Long Beach, it would just be by car, but if we go to Monaco, we can go on a cool airplane--maybe even an Airbus A380!! It may be his wish, but it doesn't mean I can't try to stack the deck in my favor a bit....

Cynthia

Days 2 and 3 of Antibody

Wow, cancer sucks. Like, really, really sucks. I hate that Andrew has it and I hate everything that he has to go through to fight it. So if you haven't guessed by now, yesterday didn't go very well. We knew to anticipate the blood pressure drop--so when it did, we were prepared to deal with it. After about one hour, he stabilized and we were on our way again with the antibody infusion. Then the pain set in. And it was not pretty. He was crying in pain for a while until we were able to up the dose of the pain medicine enough to get him more comfortable (though still whimpering). It was awful. It breaks my heart to see him in that much pain. On the bright side (if there is one), the pain solved the low blood pressure issue. His blood pressure readings were beautiful after that. But his heart rate was pretty elevated and his oxygen saturation levels dropped for a while. After a little bit, though, he was drifting comfortably in sleep chasing the dragon. Too comfortably.... He slept the afternoon and evening away, which meant that when he woke up at about 8pm, he stayed up ALL NIGHT! That part wasn't so much fun. So I had lots of coffee today. Lots and lots of coffee today.

Day 3 started off more promising. He woke up playful and in a good mood. A father of another child who received this treatment, describes it like being in the movie Groundhog Day: We wake up and do this all over again until we get it right and Andrew, courtesy of oodles and oodles of narcotics, is unable to recall the day prior. So this morning, since we knew more from the day before, we started on time and were able to tackle his issues as they came much better. Grandma also visited today (with presents of course, she is not capable of coming without toys, this must be part of grandma DNA), so Andrew was very excited to see her and his new Blue Angel (because he doesn't have about 10 of them at home already). But this one was "shinier" than the other ones, so it was different. He knows that we think grandma gives him too many toys, so he tries to justify why he should get more.

As for the antibody infusion, his blood pressure dropped again, but we handled it quickly. The pain started to come again, although he said it wasn't as bad as yesterday. But, operating under the theory that it may get worse, we jumped on it fast and he was able to sleep through it (this time at 3pm in the afternoon as opposed to 5pm yesterday). And mommy got to fall asleep and take a nap as well. The infusion just finished so we have begun to wean him off of the pain medicine. Hopefully he'll shake the grogginess off a little bit more and have some dinner soon. Daddy and Lucia are coming to visit tonight so we are excited about that.

Tomorrow is the last day in this round so we are looking forward to being done and going home on Friday. We are a little nervous, as we will get a new nurse tonight and tomorrow. We seem to have a nice little system down finally and don't want to rock the boat, but are hopeful that things will go all right tomorrow.

Cynthia

Day 1 of Antibody

Day 1 of antibody treatment is now complete. It did not go smoothly. It finished last night around midnight (it started much later than it was supposed to - long story but needless to say we were not very happy about it). The good news is that Andrew didn't seem to be in any noticeable pain throughout the transfusion. He seemed a little fidgety towards the end but otherwise was fine. At least for now Andrew is getting the right dose of pain medication to keep him comfortable. The not so good news is that his blood pressure kept dropping throughout the transfusion. We had to give him a lot of support (fluid, albumin, blood transfusion, switching from morphine to fentanyl) to stabilize him. His blood pressure held overnight, so with our fingers crossed, we are pressing ahead with the second dose of antibody today.

A big thank you to all that have signed up to deliver food this week (and beyond) - Paul will now eat this week!

Prop 8, F/A-18's and ch14.18

It's been an eventful couple of weeks: Yes, Vince and Dave got married! They have some REALLY expensive rings to prove it. And, of course, a marriage license, which is hopefully good for a long, long time and not just for the next four weeks. Please vote NO on Prop 8.

We spent last Friday at the Miramar Airshow in San Diego watching the Blue Angels do some pretty jaw-dropping things with really big, really fast airplanes. Well, at least three of us did: Lucia fell asleep during the show, despite the "shock and awe" involved. Regardless, she was a total trooper for even indulging Andrew in an airshow--not girly stuff at all. The trip down also afforded us a visit with our cousin, Lucia (not to be confused with Lucia), her husband Tim (who's in the Navy and knows ALL ABOUT fighter jets, which makes him Andrew's new favorite person!), and their son, Jerin. They are recent transplants to California, so it was good to see them and welcome them to the state. They have been initiated into the West Coast Filippone Clan officially.


To celebrate their recent nuptials, Vince and Dave were able to meet us at the last minute in San Diego and we were able to talk John, Cassie and the boys into coming down for a night. It was a mini-reunion of sorts. The kids all had a great time together and Andrew was able to swim--no tubes anymore--for the first time this year. That was a truly big and emotional moment for us. And, while the kids were entertained, the adults got to sip stupidly expensive drinks by the pool. We suppose they were worth every penny....

Getting into this week, Andrew completed his last set of scans, biopsies and tests. We are happy and relieved to be able to report only the best news: Still clear!!!

Prior to this week, we had decided that we would go ahead and enroll in a clinical trial, which is investigating the use of antibodies in treating Neuroblastoma. Of course, there is only a 50% chance of getting randomized to the antibodies and they are not without risk, particularly in Andrew's case. Nonetheless, we had decided that we would go ahead and roll the dice and abide by whatever outcome we got. So, at the conclusion of Andrew's final scan on Wednesday, we followed our oncologist back to his office where we entered the trial and were assigned to...

...antibody. It is called ch14.18. We won't go into the science. The bottom line is that we are excited and relieved that Andrew will be given every available modality of treatment to beat this disease upfront. Unfortunately, that excitement is also tempered by a fair amount of fear and concern over the treatment itself, which is quite painful and long on possible side effects. Specifically, there is a risk of what is called Capillary Leak Syndrome, which we know from our experience in August, Andrew is susceptible to.

This arm of the study will require five more hospital stays over the next five to six months. If all goes well, they will only last about a week long each. During the time that he is not receiving antibodies (and other supporting meds), he will be given high-dose Accutane, which is proven to keep Neuroblastoma at bay. We don't take any of this lightly; all of this is done as active prevention, since Neuroblastoma has such a high relapse rate.

We are scheduled to check back into City of Hope on Monday, October 20 to begin his first round of antibody treatment. Each round is administered for four days. If all goes smoothly, we will be out by Friday. Please keep your fingers crossed for that.

Meanwhile, back at home, we are very pleased to report that we have been working on the potty training and it has been going well. No accidents so far! It's amazing what a kid will do for a mini M&M. We do have our work cut out for us with his aim though; we are wiping down the bathroom a lot.

Thank you for keeping us in your prayers. We ask that you please keep at it for just a bit longer. And, as always, thank you for continuing to take care of us and keep us fed.

Love,
Paul & Cynthia

Radiation...? Check.

Just a quick note (and current photo) to let everyone know that Andrew completed his full course of radiation yesterday and seemed to manage it quite well. Next on the agenda will be a battery of tests and scans to confirm that he is still NED. We will post a more thorough update following those. In the meantime, we are hard at work planning a birthday party: Lucia turns 6 on Friday.

Love,
Paul & Cynthia

Awareness

Two posts in three days?!?!!? What IS going on? Clearly, we are starting to get a handle back on our lives....

We are writing to let everyone know--as we were actually reminded today--that September is National Childhood Cancer Awareness Month and that this Saturday, September 13, is National Childhood Cancer Awareness Day. With that in mind, we want to take a minute to get up on our soap box and preach a bit to anyone who is inclined to listen.

Before we do, though, it is crucial to us to make sure each of you knows how grateful we are for anything and everything you have done for us or will do for us during this challenging time. This post is not meant to ask more of you. However, we are asked on a regular basis what more people can do to help out, contribute, raise awareness, participate, etc. and this post is our attempt to give some direction to those individuals.

What has been most enlightening, yet also discouraging, to us so far in this journey is the realization that pediatric cancer is quite low on the totem pole when it comes to funding and awareness. Part of this is due to the fact that these are kids and research and treatment innovations have to "trickle down" (read: get through all the bureaucracy) to them; after all, doctors don't want to be accused of "experimenting" on children. And part of this is the simple fact that there are not as many childhood cancer patients as, for example, breast cancer patients. And there are certainly no celebrity childhood cancer patients. This is overwhelmingly the case with a rare cancer like Neuroblastoma. Yet, the tragic (and unfair) truth is that pediatric cancer kills more children under the age of 20 than asthma, diabetes, cystic fibrosis and AIDS combined; yet pediatric cancer receives significantly less government funding than, for example, pediatric AIDS alone.

Meanwhile, cancer fundraisers abound and successfully raise tremendous amounts of money for cancer research and treatment. Inevitably, these fundraisers trot out a pediatric cancer patient to be the poster child for the event, as nothing quite pulls at the heartstrings and the wallet as a bald toddler (we're allowed to say this because we have a bald toddler). Certainly, it plays better than a lifetime smoker with lung cancer. However, what we have learned is that, while a child with cancer draws a lot of donations, those donations rarely make it to the level of actually funding pediatric cancer research. In our opinion, this is false advertising at its worst.

To pull us back from the brink of cynicism and despair, though, there are many worthwhile organizations, charities, events, etc. that you can aid and know that they are devoted to Neuroblastoma and/or pediatric cancer. Three main ones, from our perspective, are the Children's Neuroblastoma Cancer Foundation, Magicwater and Curesearch. Their websites are: www.nbhope.org, www.magicwater.org and www.curesearch.org. Please take a look for yourselves at what they offer and see how you might get involved.

Another charity, founded by a Neuroblastoma father and in coordination with CNCF, is Lunch for Life. It is a beautifully simple concept: You are asked to donate $5 in lunch money once a month (or as often as you like) in an effort to fund a cure for Neuroblastoma. The website is www.lunchforlife.org.

A truly moving story surrounds Alex's Lemonade Stand: Alex Scott was a 4 year old, who, in the course of battling Neuroblastoma, took it upon herself to set up a lemonade stand in her front yard to help raise money so that her doctors could find a cure for Neuroblastoma. She manned her stand for four years, before succumbing to her disease. Her family continues her work by helping people host their own lemonade stands to raise funds for childhood cancer. The website is www.alexslemonade.org.

Of course, there are countless other ways to contribute: organize a blood drive, give blood or platelets yourself, volunteer at a hospital, etc. Another thing we learned: Help your local Ronald McDonald House. It turns out each operates on its own. For families that have to travel for treatment, the Ronald McDonald House is a lifesaver. You can help out your Ronald McDonald House by saving your aluminum can pop-tops (the little tab that you pull to open the can, not the can itself) and turning them in to your local House.

An idea that we are trying to promote (last-minute, we know) is to put gold balloons outside your house on Saturday, September 13. Gold is the color for pediatric cancer and the concept is to simply let people around you know that you have been touched by childhood cancer. And, at the end of the day, if it is not too much trouble, please deflate the balloons, place them in an envelope and mail them to the following Senators:

Murtha, John P. (D-PA)
2423 Rayburn HOB
Washington, DC 20515
(202) 225-2065

Young, C. W. Bill (R-FL)
2407 Rayburn HOB
Washington, DC 20515
(202) 225-5961

Inouye, Daniel K. (D-HI)
722 Hart Senate Office Building
Washington, DC 20510
(202)224-3934

They sit on the appropriations committee responsible for allocating funds for the Conquer Childhood Cancer Act. Please remind them that, now that this bill has passed, it still needs to be funded.

That is enough for now; we will step down from our pulpit. To close, we offer up a couple of videos that should give you a really good cry and perhaps a bit of inspiration and motivation. Take care and good luck.

http://www.youtube.com/cncf2007

http://www.youtube.com/watch?v=9YIofcPfne0

Thank you, again, for whatever you may decide to do.

Paul & Cynthia

287 Seconds

Dear All,

It's been a summer of biblical proportions. And then some. As you all know, Andrew made it through transplant in 40 days and 40 nights, including a last-minute excursion to the ICU. However, to take liberties with Pacino: Just when he thought he was out, they dragged him back in....

Less than two weeks after discharge from transplant, we found ourselves back in the hospital with a severely dehydrated kid and a truly bizarre case of EBV-induced hemophagocytic syndrome (Did we mention that Andrew managed to catch Epstein Barr Virus (Mono) in the course of transplant? More on that later.) As Cassie wrote here already, his immune system was a bit haywire and devouring red blood cells, causing his hemoglobin to plummet. This, in turn, had an impact on his lungs, liver, kidneys...you get the picture.

It was a nervous couple of weeks, to say the least, but the doctors seemed to get a handle on it and it settled down enough (and he is pumped up on enough steroids) that we were released again last Friday and have been enjoying ourselves at home ever since. He is still on plenty of meds at home, as well as IV nutrition at night, but he is happy, energetic, and generally in good spirits (aside from the occasional 'roid rage). His appetite also is starting to make a full recovery (again, courtesy of the 'roids--they're a WONDER).

Of course, not to let him get too comfortable or cocky, we are now pushing ahead with the next phase of his treatment: Radiation. He has received two doses so far and will receive ten more over the next two weeks. He is receiving Helical Tomotherapy, which, as we understand it, is basically next generation radiation, where the dose is split up into lots of little doses that are shot at the primary tumor bed from all around. Each course of the radiation lasts 287 seconds. It doesn't seem like much, but he also has to be sedated each time, so it is quite a production to get it done. Common side effects are nausea and fatigue, but so far he seems to be handling it all right. Also, a small victory: No tattoos. Just Sharpie drawn all over his abdomen, chest and sides (pretty scientific, huh?)

After the completion of radiation, Andrew will undergo another full set of scans--CT, bone, MiBG, bone marrow biopsies, etc.--to check for any disease. This will become routine for him, as he will have to have them every three months for the next two years and then at longer intervals for the next three years after that. At about the same time of those scans, we will be sorting out our next move, namely: To pursue antibody treatment or not. We won't go into detail here, but it is not an easy decision, especially in light of Andrew's recent hospitalization; we are starting to wonder if his body has simply had enough for now. Time will tell.

As bumpy as our road has been, we are constantly reminded of how truly fortunate we are to even be able to keep fighting this fight. Just in the last week, three children that we knew--Arden, Jose and Max--lost their fight. Two lost it to the transplant treatment itself; one lost it to the disease. All are tragic. All are hard to take. All are a reminder of just how fragile our current "peace" is. We ask that you please keep Arden's, Jose's and Max's families in your thoughts and prayers. We hope they somehow find comfort soon.

To end with a bit of silver lining, we do have some potential good news from Andrew's case of EBV: It means that he is now eligible to participate in a neuroblastoma vaccine study that is being conducted at Texas Children's Cancer Center in Houston. Could be a sign.

In the meantime, school is starting and we have to get busy potty training Andrew (the mundane things we forget about). Seriously, though, it didn't seem fair to try to potty train him when he was on IV fluid around the clock. He won't start school on time, because of his "new and improved" immune system, but we need to be ready when the time comes.

As always, we thank you for your support and for all that you do for us. Special thanks to all of you feeding us. We likely would have starved without you.

Love,
Paul & Cynthia

One-of-a-Kind

Andrew is in the middle of a course of steroids that seems to be helping with his oxygenation levels, though they are still fairly unstable and drop rapidly if he turns away from the blow-by. The difference is that he drops down to 90 instead of 70 or 80 as he was doing last week. The steroids are meant to give him a boost until his immune system hunkers down to solve the problem on its own, which could be any day now.

We are apparently in uncharted territory with this complication, giving Andrew the dubious honor of now being "publishable," so he's got that going for him, which is something.

We are also watching his bilirubin levels, which indicate liver function, as they are quite high again.

There is no indication yet of imminent hospital release, but neither is there imminent danger, so there we are.

White cells gobbling red cells

Andrew continues to befuddle the doctors as they have run just about every test to figure out what is going on with his system, but don't seem to be coming up with many good answers. They do know that he is not maintaining oxygenation without help from the "blow by" machine (which does exactly what it's name says it does - blowing oxygen out a tube near Andrew's head) and they are pretty sure that it is because his white cells are attacking his red cells, or the red cells being transfused into him. Either way, it is not a good thing, and needs to stop. He has already received one treatment with the hopes of getting rid of the antibodies against the red cells - if that doesn't work, they will try steroids.
His hydration is fairly stable now, but until we can find the cause of this condition and fix it, he will have to stay in the hospital.
The time line for radiation is set for a couple of weeks from now, with a trial run next Wednesday and radiation starting the following week. We should have time to clear this issue before it conflicts with that schedule. Here's hoping!

Back at COH

Andrew was admitted back into the Pediatric Ward at City of Hope yesterday to run tests in search of the cause of his latest slump. His energy has been very low through the end of last week and his breathing was labored. A night of dry-heaving sealed the deal and Paul took him in to the ER on Sunday morning. His oxygenation was down in the 70's (it's supposed to be 100) and his liver and kidney function numbers are high, and so he was admitted to be hydrated and put through a series of tests in order to figure out what is going on.
Later today, he will have an EKG and and Echocardiogram, and I'll post any significant results to keep everyone in the loop.

Untrained Soldiers

Andrew returned home Friday after surgery to replace his central line tubes with an internal port, which means that he can now take a bath and play without the danger of one of the dangling lines getting snagged on something. They will use the port for his transfusions and the nutrition and medications that he continues to get at night.

As the doctors explained, his white count is normal and holding, which means that he has his soldiers back, but they are untrained, like those of a newborn baby. They will slowly have to learn to recognize and fight all kinds of bugs and eventually Andrew will be re-immunized with vaccination boosters, as well. Until then, he must be protected like a newborn with limited visitors and outings.

Over the course of his bone marrow transplant, Andrew received over 25 transfusions, with most, if not all, of his blood coming from directed donors. We can not begin to express our gratitude to all of you who came to give both blood and platelets throughout the procedure. You truly impacted the course of his recovery. Over the next 100 days, Andrew will continue to rely on frequent transfusions to boost his system while he continues to stabilize. Thank you for your continuing donations and prayers.

Radiation is up next. He might even get his first tattoo for that one - between the tough scar for surgery and a tattoo at age 3, Andrew is going to be able to play the bad boy card early!

Two Bites of Food

A major milestone occured tonight as Andrew consumed his first bites of food in over a month. His blood work is showing progress as well, and most of his numbers are within the normal range now. While his liver is still enlarged, the doctors say it is shrinking back down to normal, as well. He is weaning off of the diuretics and most of the other meds. If all continues along this path it looks as though they will be sending Andrew home at the end of the week.

The next step will be to meet with the radiologist and find out the game plan for radiation, which will begin as soon as possible. And so the marathon continues. . . .

Better and better

Whether it is the steroids or just an overall improvement in his condition, we don't know, but Andrew is doing MUCH better over the last couple of days. He is speaking more and seems to be past the discomfort of the mucusitis. He is moving around freely with visible pep, enjoying his toys and playing again. These improvements indicate a significant change from the last several weeks, and give us the strong feeling that Andrew has his feet planted firmly on the road to wellness.

This kid is a true warrior, and all of your thoughts and prayers have been his army.

CT Results

The news is better coming out of the CT Scan - most of the retained fluid is resolved and the fluid in his right lung is not as bad as they had feared, so the surgical intervention was not required. Andrew has been put on a five day course of steroids to help with that remaining fluid, and will remain on the other diuretics until he is able to maintain a neutral fluid balance on his own.
There is now concensus among the doctors that Andrew appears to have a mild VOD, which should resolve itself with the administration of the steroids and a bit more time.
Andrew will remain in ICU for observation through the night, and is expected to move back to the floor tomorrow morning. We are probably looking at another couple of weeks now before he'll be going home, but we seem to be back on the road to recovery.

Phew.

CT Scan today

Andrew remains in ICU today, though there is talk of transferring him back to "the floor" (aka the pediatric ward) after his CT Scan. He remains stable enough in the majority of his blood work to make the doctors feel comfortable that he can be safely monitored from there.

The purpose of the scan today is to determine the quantity and location of the fluid that he continues to retain. An early x-ray today showed that the fluid levels in his abdomen have improved, thanks to the extra doses of diuretics, but his right lung seemed to have more fluid than yesterday. There is a possibility that they will be doing a surgical procedure to remove some of that fluid during the CT scan, as well.

As for the VOD and his liver function, we are still waiting to see what his body will do. There has been no major change on that front, but I will be updating the blog daily as we have new information.

Thank you for your thoughts and prayers, and for the many blood donors who have answered the call from City of Hope to give blood and platelets over the past several weeks.

ICU

Last night Andrew was admitted to ICU for closer observation by the on-call pediatric ICU doctor, who happens to be a close family friend and the father of Andrew's godfather, which is kind of a comforting coincidence. The reason for the move was a significant retention of fluids in and around his liver and lungs and a decrease in liver function. There will be a CT scan in the next 24 hours to determine the quantity of fluid and help them determine the cause of this setback. The concern is that these symptoms can indicate VOD, a dangerous side-effect of the high doses of chemo given during transplant.

Please keep Andrew in your prayers as he fights his way through this latest hurdle.

Ping Pong

As predicted, Andrew's white count has been dropping for the last couple of days while his body figures out how to stabilize without the Neupogin. His mouth is still hurting, as well, and so he has not yet begun to eat. We are starting to realize that his bounce back might be a little slower than we had hoped, but is still well within the expected range for the treatment.

Paul and his dad are off to Chicago tomorrow to attend a conference on Neuroblastoma, and Lucia is looking forward to spending the weekend with Mimi.

White Count is Holding!

Andrew's march to wellness continues, with his white cells at 9,000 and holding, even without the boost from Neupogin. He is still on one antibiotic for his fever and has been receiving blood and platelets daily. It will take some time for his little body to be able to maintain its proper levels of all of the various nutrients that keep us in balance, and so the transfusions are still necessary to keep him going.

His sores have begun to heal, and he is drinking and talking more each day, but he is still on full-time TPN (nutrients through his line instead of eating.) As soon as he starts to take food, he will begin his special post-transplant diet, which sounds pretty much like every toddler's dream. He can only eat food that has been heavily processed or cooked, like Chef Boyardee and Campbell's soup. All fresh fruits and veggies are off the menu for a month.

The best news of the moment is that, with solid white counts, Andrew has been able to leave his hospital room to wander the halls and visit the play room for the first time in nearly a month. The world is opening back up for him, and we can't wait to get him home!

White Count on the Rise

Excellent news today, as Andrew's white count has begun its climb! Now we can expect the numbers to ping pong around a bit on the rise up, but the fact that there has been an initial jump indicates that the stem cells have taken hold. Also, as his white count increases, the sores in his mouth and throat will begin to heal and Andrew's appetite and desire to swallow should return. There are still several hurdles to overcome, but that light at the end of this tunnel is starting to get brighter.

Go Andrew!!!!!

Day Plus 7

Andrew has come through a harrowing week of transplant and is showing some signs of improvement.

On Thursday, as his doctors will now admit, things were getting "serious" as Andrew's blood pressure dropped, he had a high fever and he retained enough fluids to gain a kilo overnight. Apparently he was going septic, which just doesn't sound very good, except for the fact that it is in the past tense now.

His mucusitis (the mouth sores associated with the chemo and a zero white blood cell count) are his primary source of discomfort now, and still make swallowing painful enough that he pretty much avoids it at all costs. Cynthia, in her maternal wisdom, has come up with a way to ensure that he does swallow his Tylenol, which is helping to keep his low-grade fever at bay. This fever, we are told, could indicate that the stem cells are ingrafting, and so could be a sign-post for the light at the end of this tunnel.

Andrew will be receiving another transfusion today from a directed donor - thank you so much to those of you who have responded, and are continuing to respond, to Andrew's need for blood and platelets.

Day Zero

After a week of chemotherapy in preparation for his new bone marrow, Andrew received his stem cells today in an anti-climactic ten minute injection through his central line. Now the magic happens, as those brilliant stem cells begin the growth of his new bone marrow and allow for the creation of white cells and the basis for his immune system (I am hoping that all of you doctors out there forgive my highly simplified, possibly inaccurate description of events.)

So, as of this moment, Andrew's count is zero and will likely stay there for over a week. Day 9 is the first goal point for when he should start to feel a little better as his numbers start to rise a bit. He is no longer jumping on the bed, as the effects of the chemo have hit hard by now - he is feeling very sick and moving very little. Sitting in Mommy's lap brings him comfort, and the Benadryl keeps him drowsy, which helps, too.

Local donors have probably begun to receive phone calls from the City of Hope blood donor center, and many of you are scheduled to give in the coming weeks. Thank you for that, and for all of the prayers and love sent by all.

So Far, So Good

Andrew checked in to City of Hope on Sunday evening after testing clear (No Evidence of Disease) for Neuroblastoma cells last week. His energy level has been very high (which makes sitting in a hospital room hooked up to a bunch of IV lines slightly more complicated) and he is happy. When he is not jumping on the bed, he is shooting cars across the room from a ramp to watch them bounce off the walls or crash into each other.

The chemo that he has been receiving has not hit him yet with the nausea and sores (though those are likely ahead) but his blood counts have been taking a beating, and Andrew has already received two transfusions. For those of you who have been waiting until the right time to give blood, your time is now, especially any O+ readers. For platelets, the blood type does not need to match, so if you are another type and still want to give, please make an appointment to give platelets. Remember that the platelet donation is more time intensive, so set aside a couple of hours for that one. Call the City of Hope blood donor center at 626-471-7171 to make an appointment, and be sure to mention Andrew's name.

We'll keep you posted more regularly with news of Andrew's progress through this treatment. Thank you for your continuing prayers and support.

Status Report

Dear Family, Friends and Supporters,

We are through the initial phase of Andrew's treatment and wanted to take a moment to share
with you what that means, as well as give you a sense of what is in store next for him and for us.

Since January, Andrew has undergone six rounds of what is called Induction Chemotherapy.  The
purpose of the first five rounds was to reduce the size and change the consistency of his tumor in
order to make it operable.  Andrew's tumor responded quite well to the chemotherapy and, as you
know, his remaining tumor was successfully removed several weeks ago.  He then underwent his
sixth round of chemotherapy to try to clear any residual disease left after surgery.

Chemotherapy has cost him his hair, eyebrows and eyelashes, which he doesn't seem to mind, but
which costs us a lot in sun block and baseball hats.  It has also cost him his appetite and a lot weight.
We used to have firm eating standards in our house, but those have slowly fallen by the wayside
since January, and we now find ourselves eating marshmallows for breakfast and getting overly
excited when the magic words, "I'm hungry," come out of his mouth every few days.  Thankfully,
he has not lost his taste for milk, which just may be the only thing keeping him alive.

We are trying to enjoy a bit of a break from treatment for about two weeks, at which point (June 22),
we will go back into City of Hope to begin Stem Cell Transplant (SCT).  We say "trying," because
Andrew has to complete a battery of tests prior to being approved for SCT, which has meant that
we are at the hospital almost every day this week.  The purpose of these tests is to confirm that
Andrew has "No Evidence of Disease," or "NED," prior to the transplant procedure.  For
neuroblastoma, they do not really use terms like "cured" or "remission," they simply state that they
cannot find it for now.  It is important that he has achieved NED status prior to transplant, because
it gives him better long-term odds with this disease.  The tests are also used to ascertain the impact,
if any, that Induction Chemotherapy has had on his heart, kidney, liver, and hearing function.

Transplant will be a four to six week hospital stay for us, where Andrew will effectively be in isolation.
The summary of transplant is that he receives 8 days of intense chemotherapy, which will wipe out
his bone marrow, at which point he will be re-infused with his own stem cells (previously harvested
and stored) to "rescue" his marrow and restart it.  As our doctor described:  It is like hitting the reset
button on his immune system.  As another parent described:  It is the single hardest thing I've ever
had to do in my life.  Each child is different in terms of how long it takes for his or her bone marrow
to recover, so that is why we  don't know the exact length of our stay.  By the way, we need to make
a plea for blood and platelet donations in Andrew's name at City of Hope.  He will require many
transfusions over the course of his stay (according to the transplant doctor, some kids receive daily
transfusions), so if you are able to give, please do.  With that said, he will not start needing blood until
approximately June 30, so don't rush to go now.  It will be better to give closer to that date.

The rationale behind transplant--and really most of the treatment for Neuroblastoma for that
matter--is that they are trying to "mop up" any stray cancer cells that might have been missed by
Induction Chemotherapy and by surgery.  Neuroblastoma is notorious both for being stubborn and
for hiding well.  After transplant, Andrew will receive radiation treatment to his tumor sight and
then go on a regimen of cis retinoic acid for six to twelve months.  Again, the idea behind both is
clean up of any trace cancer cells that might be lurking.

Somewhere in the radiation period, we have some decisions to make in terms of whether we pursue
additional treatments above and beyond the standard protocol.  For example, there are potentially
promising antibody treatments that are available in New York or there are other trials we might
investigate at St. Jude's or at Texas Children's.  Again, the fear with neuroblastoma is that it is
stubborn and likes to relapse.  Fifty percent of children will relapse and those who do aren’t given
much hope of long-term survival.  There is a line of thinking that says throw everything you can at
this disease, yet there is another that says don't use all the weapons at your disposal upfront,
because you may wish you had them later.  This is the line we will be trying to walk down and the
balance we will be trying to strike as transplant unfolds and we move along in Andrew's treatment.
As another doctor told us:  At some point, we have to stop telling Andrew that he is a sick kid and
just let him be a kid.

In that spirit, what is immediately in front of us is a trip to San Diego and visits to Legoland, Sea World
and the Wild Animal Park.  This will be next week and we hope to enjoy a fun family vacation and
forget about cancer for just a few days.  We were advised by another family that the stay for
transplant is loooooooong, so cram in as many good, recent memories as you can beforehand so that
you have fun stories to talk about to help pass the time.  Good advice; we'll take it.

Before we sign off (and are not heard from again for months), it is important to us, especially in
light of the stay for transplant, to talk about Lucia, who has been an incredible and inspirational
daughter and big sister--somehow managing to take all of this in stride--but who is a five-year-old
nonetheless and is part of the collateral damage of this disease.  She has been gracious and kind and
funny and understanding and (largely) "low maintenance,” but her world has been turned upside
down just like ours, so we ask that you please keep her in mind just as you do Andrew.  When you
see her, please ask how she is doing.  Please let her know that you are interested in her and what
she is up to, not just the latest on her brother.  We would be so grateful for that.

As for us, we are holding on.  Some days are fairly miserable (yesterday) and some days are fine
(we would have to think back a bit to pin one down), but we are managing and getting by.  We can
safely say that we do not know what we would do without the unbelievable compassion and support
(and food) we have received from everyone.  It is truly humbling.  We ask that you continue to keep
up the prayers and positive thoughts for Andrew, Lucia and us.  Clearly, they are working and we
are drawing on them.  In particular, hope for good results (NED) from Andrew's tests and scans this
week, wish for appetite and weight gain, and pray for smooth and quick transplant.

Thank you.  Thank you.  Thank you.

Paul & Cynthia

By the way, since we look for silver-linings wherever we can find them now, the good news so far is that
Andrew has a pretty impressive scar that will be quite useful in getting the ladies when he is older.
Much older.

Happy Birthday, Paul!

Paul spent the day eating cheese, watching cycling, and spending time with the kids, all together under one roof. All in all, it was a very good day.

Andrew has now completed his full course of chemotherapy.

It's time to celebrate that accomplishment and gear up for the next big procedure, which is his ABMT (autologous bone marrow transplant) in a couple of weeks.

Round Six Under Way

Andrew is at City of Hope in the midst of his sixth and final regular round of chemo. He is in good spirits and, while he is not eating much, he is also not throwing up, which is good. We are crossing our fingers for an on-time discharge so that he can be home for daddy's birthday on Monday.

Home, Playing Baseball

Andrew, in true warrior super-dude style, was out playing baseball this weekend with his cousins. There is nothing that can hold this kid down! Clearly, he is recovering well from surgery and is happy to be home. The pathology from the surgery came back with evidence of some live cells still in the tumor, so we are still very much in the battle with big procedures ahead.

Andrew will be home for the majority of the week, and then back in to City of Hope for his sixth round of chemo. That final regular round will be followed by the bone marrow procedure in mid June, for which Andrew will be admitted to the hospital for an extended stay of probably a month or so.

Please keep the prayers and love coming!

One for the Team

The surgery was successful! The surgeon was able to remove all visible tumor with no major complications, and Andrew is in recovery. They will be at the hospital for the remainder of the week, while his incisions heal. Chalk another one up to the power of prayer and modern medicine - go team Andrew!

Surgery Tomorrow

We have a big day ahead of us, with Andrew checking in to Children's Hospital for his surgery to remove the tumor tomorrow. The CT scan last week showed significant further reduction in the size of the tumor, putting him in the excellent category of "highly responsive" to the chemotherapy. That is great news in terms of the complication of the surgery (the smaller the tumor is, the easier it is to take out) as well as the likelihood of the treatment blasting any hidden cancer cells.

Andrew is going in to the surgery strong, having gained a few pounds back this week. He has had a great week with his family, with Mimi and PawPaw and Aunt Maritza all coming in from our of town to visit and be here for the days ahead.

Keep those prayers coming and we will keep you posted on the outcome of the surgery.

Thank You Blood Donors!

We had another hugely successful blood drive today and wanted to thank all of our generous donors. The City of Hope mobile team was a well-oiled machine and the event went off very smoothly. We are so grateful to St. James for allowing us to use the parish hall, and to Mr. John for setting up a lovely and very comfortable lounge area for the donors. Leigh Repstad undertook the enormous task of scheduling all of the appointments and was instrumental in pulling off another seamless blood drive. Thank you so much, Leigh.

And most important of all, to all of you who came out today to give blood for Andrew, we are deeply grateful for your support.

Blood Drive and Children's Hospital Blood Donation Request

As soon as he can hold down any food or liquids, Andrew will be released to go home. He is hanging in there, trying a few fruit loops and a couple of sips of Gatorade every once in a while, to test out the pipes. So far it has all been finding its way back up the pipes, but with any luck the nausea will subside soon and he'll be headed home.

Thank you all for your tremendous response (again) to our upcoming blood drive at St. James. As a result of your overwhelming support, our appointments for the day are full! That blood will be directed to City of Hope for Andrew's regular transfusions during the course of his treatment.

For those of you who had not yet signed up, or who tried and didn't get an appointment (and especially for our Westside friends,) we are hoping to direct you to Children's Hospital Los Angeles. Andrew's surgery will be there in the second week of May, and we are hoping to have some good O+ blood ready for him when he needs it. You can call to make an appointment at 323-361-2441. Make sure to give them Andrew's name and birthday (February 26, 2005) when you make the donation.

Round 5 Underway

Andrew is back at City of Hope, now part way through his fifth round of chemo. This round is a repeat of the drug from round three that had him throwing up for over a week, but he seems to be bearing it a bit better this time around. They are going with the "nothing in, nothing out" theory rather than trying to get him to eat and then watching it all come back up. Since he is getting his fluids through his line, there is not danger of dehydration and he might be able to avoid the cycle of nausea this way. Here's hoping . . .

Thank you to those of you who have signed up to give blood next week. We look forward to seeing you there!

Lightning McQueen and Hot Wheels

I am crushed to be posting this without a picture, but the battery was dead and, thus, the camera was useless on our trip today to the Peterson Automotive Museum. You will have to imagine the look of terror on Andrew's face when he saw the real, life-sized Mater and Lightning McQueen staring him down.

Up in Cynthia's arms he mustered the nerve to steal a quick glance at the massive Cars characters, clearly certain that they were about to burst to life before him. It was all we could do to get the boys (Jude wasn't much braver, you see) to do a quick lap past the Batmobile and the gallery of lowriders before they dragged us down to the museum store to purchase one of the MUCH less threatening HotWheels.

Cynthia and I spent much of the long ride home wondering why we hadn't just taken the boys to the car aisle at Target. Ah well, not every field trip works quite the way we imagine.

Oral Ouchies

Andrew is at City of Hope for a few days with a sore mouth, which is a common side effect of the chemotherapy. As his white cells rebound from the last round of treatment his mouth should heal and allow him to eat again. Until then, he is staying more comfortable (with the help of some codeine) and hydrated at the hospital.

For those of you who are gearing up to give blood for Andrew on May 1, we are scheduling the appointments now. Please set up an appointment by emailing Leigh Repstad at leighandjohn@sbcglobal.net with your preferred time slot (every twenty minutes from 9AM to 3PM on Thursday, May 1).

Blood Drive May 1

As I mentioned in the previous post, we will be having a blood drive for Andrew leading up to his surgery and bone marrow procedures. He will be needing a lot of blood for both and we are counting on a lots of help from our friends to make sure he has all the blood he needs.

The blood drive will be at the St. James Parish Hall in South Pasadena on May 1 from 9:00 - 3:00. The same restrictions apply as for the last drive, so if you have concerns about whether you are eligible to give, please check out the City of Hope Donor website at http://www.cityofhope.org/BloodDonorCenter/ for a detailed list of restrictions.

Because you can donate blood every 56 days, if you donated last time you are good to go again, so we hope you will consider another donation. Please mark your calendars for the 1st and stand by for the sign-up instructions.

Round 4, Complete

Cynthia and Andrew are heading home today after a joyously uneventful round of chemotherapy. Andrew has ridden the wave of all of your positive energy through this treatment with very little nausea and a decent appetite. According to Mom, he was quite peppy and energetic throughout! After a quick transfusion this morning, he should be home for his nap this afternoon. We are now looking at two weeks off with no scheduled procedures before the next round of chemo.

There will be another blood drive in the first few days of May to stock up for the surgery after round 5, so for all of you donors, get geared up to give a pint for Andrew and we'll keep you posted on the details as we organize the event.

Great News Today

The CT scan showed Andrew's tumor significantly reduced today, which means that he is responding well to the chemo. This was excellent news for his mid-treatment status check and gives us all a lot to be thankful for going in to round 4 of treatment in the next few days. Way to go, warrior!

Easter Bunny at City of Hope

After reaching the end of a few days of mysterious spiking fevers, with lots of negative cultures (indicating the absence of a central line infection), the good doctors at City of Hope are sending Andrew home today with a new pint of blood.

The Easter Bunny made several visits to the pediatric ward, and Andrew was blown away by the enormous gift baskets he brought with him. There was even an easter egg hunt for the kids on the floor, which Andrew watched with amazement.

This week should be interesting, with several scans and tests scheduled to get a status check on Andrew's progress with the treatment. We'll keep you all posted with the updates.

Fever

A 103 degree fever sent Andrew back to the hospital this afternoon. They are assuming it is a central line infection and are giving the requisite antibiotics to clear it up. As per protocol, this will be a minimum two day stay while we wait and see how the fever responds to the treatment.

I know that there are many of you checking in with Andrew through the blog and sending your prayers and healing thoughts his way every day. Paul and Cynthia continue to read your comments on the blog and they gain so much strength and courage through your words of support.

Day at the Zoo

Jude and Andrew hanging out in front of the new gorilla exhibit at the zoo


The giraffes were really cool - there was even a baby giraffe wobbling around on spindly legs.

Needless to say, a good time was had by all. Andrew is starting to eat a bit more every day, and is holding most of it down, which is great. We are looking forward to a quiet week before heading in for round 4 next Monday. I think the ducks at the Arboretum might have a visit coming in the next few days if the weather stays nice. . . .
And, in case it gets chilly, mom has finished her first knitting project so Andrew has a lovely and super-soft new hat to wear - way to go, Cynthia!

Electrolytes

After being home for a couple of days, but still not eating or keeping much down, Andrew returned to City of Hope yesterday to receive some nutrients through his line. He should be there for a couple of days while they pump him full of electrolytes and potassium. When he comes home, he'll be on a strict diet of blue Gatorade and bananas to keep those numbers up.

Andrew is most likely going to continue to need weekly blood transfusions through the next several rounds of chemo and then more for his surgery after round five. We will be organizing another blood drive closer to the surgery date, but in the meantime if anyone is in the neighborhood of City of Hope and wants to drop by the blood donor center to give blood or platelets, you can designate your donation for Andrew there, as well. Go to the link below to make an appointment:
http://www.cityofhope.org/BloodDonorCenter/

Thank you all for your continued support and prayers!

Round 3

Andrew has been back at City of Hope for his third round of chemo after a weekend at Lake Arrowhead with his mom, dad, Lucia and Uncle Dave to see the snow. His stem cells were successfully harvested last week through the femur line (they actually got 10x as many cells as they had hoped for- go warrior champion!).

Andrew is taking this round with good spirits, but no appetite. Who needs food when you have PlayStation, anyway? Having discovered the Cars game and the fact that every room at City of Hope has PlayStation, he is all set with a diet of race cars and entertainment.

Andrew received another transfusion yesterday, with more designated blood from our blood drive at St. James. For all of you who came out to give blood, know that you are having a direct impact on his treatment and we are so grateful to you!

Andrew should be home tomorrow for a couple of quiet weeks of recovery. Thank you for your continuing prayers and good wishes.

Happy Birthday, Andrew!

Andrew was wowed when he came home from the hospital this afternoon to find his house full of balloons in celebration of his third birthday. He had a blast playing with his cousins and sharing not one, but two yummy ice cream cakes with the crew.

The stem cell removal that had been scheduled for today was delayed after several failed attempts because of a problem with Andrew's central line. Because they could not harvest the cells as planned, there will be a surgery tomorrow to put a temporary line into his femur. They will then collect the stem cells through that line. The procedure will require an overnight stay at City of Hope, but we are hoping Andrew will be home for the weekend and the start of next week before he checks in for round three of chemo.

City of Hope

First of all, we want to sincerely thank all of you who came out to give blood yesterday. We had over eighty people who came to donate their blood for Andrew and to give their support to Paul and Cynthia. We are also enormously grateful to Leigh, who did an amazing job putting the whole thing together and making sure that everyone in the community knew about it. Despite the gloomy weather, it was a beautiful day.

For those of you who could not make it to the blood drive but who still want to give blood, it is important that you know that Andrew's care is going to be moved to City of Hope in Duarte (just off the 210 and 605 freeways). To make a directed donation, please contact their donor center at
http://www.cityofhope.org/BloodDonorCenter/Friends.htm

In the coming week, Andrew will be receiving a blood transfusion followed by his stem-cell removal procedure, during which they anticipate using 8-10 units of blood. Additionally , he will be receiving Platelets during the week.

Many of you have been waiting to donate your Platelets until Andrew needed them - your time is now! For Platelet donations, you do not need to be a matching blood type, but you do need big veins and solid flow as the procedure requires an output and an input while the blood is circulated through a machine to filter out the Platelets for donation. So, take a good look at those veins and, if you think you'll qualify, please go to the website listed above to schedule an appointment in the next day or two if possible.

Andrew, our little Warrior, has been hanging tough with an incredibly peppy week. Even with zero white cells in the post-chemo down-swoop, he has been happy and chatty and still completely obsessed with fighter jets. With his third birthday coming up next week, that gives us some great ideas for presents (thanks to the internet for making Blue Angels paraphernalia so easy to come by!)

From Paul And Cynthia

Dear All,

We have had Andrew home for about two weeks now and have been enjoying our time together. He has been in good spirits, regaining his energy and--most importantly--his appetite, and playing. Treatment is moving quite quickly for us—Andrew completed Round 2 of his chemotherapy on an outpatient basis on Friday with no significant setbacks other than a bit of vomit—and we spend most of our time trying to stay on top of all we have to do for him, while also trying to educate ourselves on his disease, treatment protocol, alternative treatments, etc. We will be minor experts in Neuroblastoma by the time we get through this.

Nevertheless, we are home and have a moment to breathe and it was important for us to personally post on Andrew’s blog and let each and every one of you know how truly grateful we are for your kind words, kind thoughts, kind deeds these past several weeks. It is all welcome and appreciated. Quite honestly, we are completely overwhelmed by the outpouring of support and love that we have seen from family, friends, acquaintances, and even strangers. From individuals to families to entire communities, we know that Andrew is receiving continual prayer and positive thought. Please don’t stop.

There is no way we will ever be able to thank you all individually for the contributions you have made to Andrew and to our family to help us through this time. From the blood donations, to the meals, the prayer lists, the toys and gifts, the cards and emails, the simple kind word or embrace—it has all been special, meaningful and appreciated. It does not feel like enough to send out a collective “Thank You,” but we hope you understand.

Again, please keep Andrew in your thoughts and prayers. With support like what we are experiencing, we will make it through this.

Sincerely,

Paul & Cynthia Filippone

By the way, we are also picking up our cancer terminology and lingo and Andrew is a “warrior” as he fights this disease. It is important to us that you have that image of him in mind as you think about and pray for him.

Blood Drive Scheduled: February 21st

Andrew has been enjoying a peaceful week at home. A highlight was his trip to the Arboretum yesterday to feed the ducks. He's also developed a new love for precision fighter jets and, thankfully, You Tube has provided a steady supply of viewing opportunities for him. He starts his second round of chemo on Monday (out-patient) and Andrew and his whole family continue to appreciate all of your prayers and good wishes.

For all of you local friends, Leigh Repstad has organized a blood drive for Andrew at St. James Parish Day School. Thank you, Leigh! All of the blood collected will be directed to Childrens Hospital for Andrew, and others in need in Andrew's honor.

Thursday, February 21st

9:30 am - 3:30 pm

St. James Parish Hall

1325 Monterey Road, South Pasadena

Make an appointment online at http://www.givelife.org/, and enter sponsor code: ANDREWF
or call Jesika Go at 909.859.7108.

Please allow 45 minutes to an hour for your blood donation and bring a photo ID.

What you should know:

• Must be at least 16 years old (16 year olds need parental consent)
• Must weigh at least 110 lbs and be in good health on the day of the blood drive
• No history of Hepatitis after age 11
• Not on any antibiotics 72 hours prior to the drive
• No tattoos in the last 12 months or unsterile piercings in the last 6 months
• Have not spent more than 3 motnhs combined, since 1980 in the areas of the United Kingdom, and no more than 6 months combined, since 1980 in Eastern/Western Europe
• Have not traveled to any country with a high risk of Malaria in the last year (including the rural areas of Mexico)
• All needles are sterile, disposable and never reused
• Please eat a good meal and drink a lot of fluids prior to donating
• Each blood donation has the ability to save 3 lives
• If you have any questions about your ability to donate, call the American Red Cross at (800) 843-2949, ext. 7066

Back in His Own Crib

After being discharged yesterday afternoon, Andrew and Paul returned home to meet up with Lucia and Cynthia for a quiet evening at home, together. Andrew was thrilled to be back with all of his toys and, once he finally settled down, slept peacefully all night in his own crib.

His second round of chemo is scheduled to start a week from Monday, and with any luck that should be an out-patient process, going in for a couple of hours each day for five days. The goal at this point is to stay fever-free and enjoy the calm peacefulness of home. I believe a trip to the Arboretum to feed the ducks is also on the calendar once the weather clears up.

From here on, I'll update with anything newsworthy, and we can all hope that it will become more of a weekly blog than a daily one.

Short Hair Like Daddy

After leaving quite a bit of hair on the pillow last night, it was time for a little haircut today. Andrew was a serious trooper for Aunt Cassie's sneak attacks with the scissors while he played Playdough with his Dad, and at the end thought it was pretty cool that his hair felt short and spikey like Daddy's.
His fever is down, his spirits are high, and all indications point to a likely discharge tomorrow (fingers crossed).

Curveball

Andrew's fever spiked up last night just after dinner at home, sending him back to the hospital with Mom. There doesn't seem to be any indication of infection in the blood work, but we are looking at another 48 hours, at least, while they observe him and give him another course of one of the meds meant to help combat infection.