Spinal

Another spinal tap down!!
All went well today. Everyone (nurses and doctors) always comment on how well behaved and cooperative Ben is during all the procedures. Everyone is always amazed at how mature he is for a 7-year old!
Ben had an IV put in, blood drawn, a spinal tap and vincristine (chemo) today. All went well and we had the wonderful news that his blood looks really good. As we were hoping, this has been the nice and easy phase they were expecting. A nice little break before the next phase starts (later in October). We also received the wonderful news that there was a typo in the information we received about the next phase and it looks like he will NOT have to receive a spinal tap on Halloween as we previously thought!!
Ben is in great spirits and feeling great (he was very happy to have his Poppy there during the procedure today). We will continue to report on all developments!

(p.s. Thank you Marlene for the awesome dinner and delicious cupcakes!)

Great Weekend!

We have had a very fun few days! Friday was the first field trip for the boys and I was able to tag along as a chaperone for Ben's class. We went to the park and had a wonderful time playing games, playing on the jungle gym and having a picnic. A beautiful day of playing outside with lots of friends!

The biggest treat of the day was Scott's return from trial. The boys were so excited and had a lot of fun playing until way past normal bedtimes. David wanted to have a celebratory dinner for Daddy's return. His pick was ribs. Scott and I sat there amazed as David polished off a whole rack without a problem - that boy can eat!

Ben has the class mascot for the weekend so we went out and about for an "army day" on Saturday looking at army trucks and artillery and other such stuff (I'm sure the boys will be upset I don't remember the actual names of everything!) We took lots of pictures so Ben can complete his Buster Bunny book to share with his class on Monday.

Today has been fantastic with a great visit from family. The boys had a great time playing with their cousins...oh yeah, and then the cutting of their uncle's hair! Although Ben has not lost all of his hair yet he has been continuously pleading with his Uncle Chris to shave his head early. His uncle just couldn't say no any longer and brought over the hair trimmers as Ben asked. Ben and David were amused by the new hairstyle they gave him but I don't think his wife and girls quite liked it (but it should look normal again very soon so I think everyone will survive)!

Some News

I came home today to find a letter indicating that I have been appointed to the Board of Governors of Cedars. This will allow Nicole and me to participate more actively in fundraising for the hospital, the Cancer Institute and the cancer research done there.

We are going to focus our efforts in large part on the Pediatric Hematology-Oncology Fund, including by directing that our own contributions be allocated there. So let me start by asking all of you to donate whatever you can, however nominal, to this fund. The link is in the right margin.

And if you forget, don't worry, we will be covering this material again. :)

Swimming

All is still going well here. The boys are having fun at school and yesterday we decided to take advantage of having the PICC line out by going over for a swimming lesson. The swim school has been AMAZING and has been so supportive - they have kept the boys lesson times available to us even though Ben hasn't had a lesson since April and David has only gone sporadically through all of this!

Ben was a little nervous he would get too tired but he ended up having so much fun! He did work on his backstroke...but he also spent a lot of time on the slide and diving board along with David (who had a blast as usual!)

Still Great!

Ben is still feeling great and having a wonderful time at school. He had a check-up yesterday and a blood draw without the PICC line so had to have it done the old fashioned way. Although he was very nervous, he was also very brave and all went smoothly. Best of all, Ben's blood looks great and should have a week off until his spinal tap and chemo next week. There was talk about possibly putting in a new PICC line next week as he will be out for the spinal but after further review it looks like he won't need the new one until about mid-October when he starts the next phase of treatment (Delayed Intensification). It will be nice to have the line out for a couple of more weeks - just makes life a little easier. We will take what we can get!
Sorry for the lack of posts lately, I have been a bit under the weather so have been trying to rest as much as possible to get better quickly. I am hoping that the next few weeks we will just be posting about normal things like going to school and playing with friends. We will get back to the serious stuff in October.

Beach Day!

We just had a fantastic day at the beach. When I saw that the boys had the day off of school today I asked Ben what he would like to do. I told him it could be anything and suggested that he think about what he missed doing this summer, he immediately asked "can we go to the beach and then have dinner at Islands?" I said absolutely and David was thrilled with the plans as well.

When we arrived at the beach this morning Ben spotted three dolphins swimming very close to the shore - the boys were so excited. Soon a bunch of friends joined us and the boys had fun digging in the sand, playing in the waves and boogie boarding. Another highlight was catching sand crabs. Thankfully I was able to convince them that we shouldn't bring them home with us because they would be much happier staying at the beach. I didn't know how long Ben would want to stay but he was having so much fun we ended up staying all day and were even able to go to Islands after we got cleaned up.

This is such a wonderful break from the tough summer. Ben is having a great time feeling like a "normal kid" again.

So Ben, how was school today?

"Fantastic!"

Go, Ms. Thomas, go!!!

Kasey Thomas, one of the teachers at Ben's school, is competing in the Nautica Malibu Triathalon this weekend to raise money for the Leukemia and Lymphoma Society. The race is on Sunday, September 16 if you want to come out and support her!

And if you haven't already, please check out Ms. Thomas's Team-in-Training page, where you can get more information and make a donation.

Thanks, Ms. Thomas!

(Note to the Internet-challenged: If you click on the underlined words, you'll be taken to other places with more information!)

Quote of the Day

Ben yesterday, with a giant smile on his face:

"I feel like a normal kid again!"

Bye, bye PICC line!

Today is Ben's last day on the antibiotic pump. After school, he'll go to the hospital, return the pump, and have the PICC line removed. He's excited because he gets to help pull it out!

Losing the PICC line will be great because Ben will be able to bathe and swim like a normal kid -- no more wrapping his arm in Saran wrap so he can take a bath or shower. But when they need to draw blood, they'll have to do it the old fashioned way. That will suck, but he'll get used to it, we hope.

I have a long trial starting on the East Coast soon, so I'm going to be gone a lot. Out for a week, back for a couple of days, gone for another week, then home for a week, then gone again, etc. Hard to predict the exact schedule, and it's tough when it takes all day to get home. But we have telephones and a webcam, so hopefully all will be OK. Nicole has lots of support, so that's good. Thanks to all of you who will be helping her out while I'm gone!

Great Day!

The boys woke up early because they were so excited to start school and raced through breakfast because they wanted to get there early. I told them that we could go a little bit early but not go too crazy on the first day (I was a little nervous about Ben's stamina). They eagerly jumped out of the car when we got to the school and I barely got a wave as they ran in. I, of course, was a nervous wreck!

I was first in line at the pick-up looking anxiously as the clock slowly ticked away. When they were finally brought out and put in the car I asked them how the first day was and they both yelled "FANTASTIC"! They love their teachers and their friends and had so much fun! Ben said he didn't get tired the whole day and David said he didn't get into too much trouble. :)
Ben said he was asked alot of questions about his PICC line and about the pump but he was happy to explain everything.

We had our daily hospital visit immediately after school and although Ben's hemoglobin is a little low and his white blood count is now too high the doctors and nurses are not concerned. This is a normal side effect of two of the drugs he is currently taking. We will go in for another antibiotic refill tomorrow but then the PICC line comes out on Friday. We should have 6 weeks off. Blood draws will certainly be more difficult but he shouldn't need that many during this phase. They will put in a nice new PICC in October when he starts the next phase of treatment.

The boys have already had ice cream sundaes to celebrate their first day and have already finished with their homework so we will be having a nice relaxing evening.

School!

Ben and David started school today. Ben wore his antibiotic pump around his neck and kept a container of Purell in his pocket. It will be interesting to see how this goes. He should be done with the pump on Friday, and I think they'll remove his PICC line then.

LA Times on Urgent Need for Blood

http://www.latimes.com/news/local/la-me-blood2sep02,0,7158358.story?coll=la-home-center

Blood shortage grows serious

By Mary Engel, Los Angeles Times Staff Writer September 2, 2007

In the blood business, Labor Day is the last hurdle of the donor-dry summer. Soon, college and corporate blood drives will get underway to replenish reserves. All that's needed is to get through the holiday weekend with no chain-reaction freeway crashes or major train wrecks.

But a dwindling pool of donors nationwide could turn today's seasonal shortages into a year-round drought, blood experts say. And Southern California would be hit especially hard. On average, just 5% of U.S. adults donate blood; here, it's fewer than 3%.

The American Red Cross Blood Services of Southern California needs 1,500 units of blood every day to supply more than 150 hospitals in Los Angeles, Orange, San Diego and Ventura counties. Already it must import 40% of that from the Midwest and rural areas in other parts of the country. An earthquake or bridge collapse could easily triple the organization's needs.

"The general public presumes that nobody's going to bleed to death because there's not enough blood," said Dr. Jeffrey McCullough, a professor of laboratory medicine at the University of Minnesota and an expert on the nation's blood supply.

But getting donors, he said, "is more and more difficult, and the reforms make it more and more expensive." An average adult has about 10 pints of blood, and a major trauma victim can need up to 100.

Generally, the public's concern is blood safety, not supply. That's been the case since the 1980s, when HIV-tainted blood infected more than 12,000 patients nationwide through transfusions.Today a battery of tests screen blood for HIV, hepatitis, West Nile virus and other pathogens. A series of questions excludes donors who have visited countries with malaria or mad cow disease.Temporary restrictions on everything from travel to tattoos often end up deterring donors permanently. A study by McCullough in the July issue of the journal Transfusion concluded that 37% of the U.S. population is now eligible to give blood, down from an estimated 60% in the 1990s.

"The blood supply is extraordinarily safe," said Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania and a former member of a federal advisory committee on blood safety. "But you have to remember that having blood available is part of safety, too, particularly if you have some kind of disaster and you need a lot."

The blood-bank system that people take for granted began during World War II as a way for citizens to help wounded soldiers on the front lines. Dr. Charles R. Drew -- for whom the medical school south of Watts was named -- discovered how to preserve and store blood and organized the first blood drive. Neither subsequent generations nor immigrants have embraced the donor habit as enthusiastically as the war generation.

"We don't have a blood supply problem, we have a blood donor problem," said Teresa Solorio, spokeswoman for American Red Cross Blood Services of Southern California. "It's easier to get people to donate money than to donate blood."

Meanwhile, even with the development of blood-conserving surgeries, the need for blood has risen because of medical advances and an aging population that needs hip replacements, heart surgery, cancer treatment and kidney transplants."

As the baby boomers are getting older, they're going to be needing more medical procedures," said Dr. Ross M. Herron, the regional Red Cross center's chief medical director. "And it's going to fall to the Gen Xers and the millennial generation, just like Medicare and Social Security and everything else."

Type O blood

Blood shortages occur in pockets across the nation, especially in Los Angeles, New York and other large metropolitan areas, which tend to be faster-paced and have less of a sense of communitythan parts of the Midwest and South, blood experts say. But natural disasters, for example the recent floods in Oklahoma, can mean less blood from states that usually have enough to export.

Recruiting new donors is even more urgent in Southern California because of its Latino population, whose blood type doesn't always match that of Mid- western imports or even local donors.Blood type, like eye color, is inherited. About 45% of whites have type O blood; an estimated 65% of Latinos have it. People with type O blood can receive only type O, and demand is growing as the Latino population grows.

Adding to the demand is the key role type O blood plays in emergencies: It alone can be transfused into patients with any of the four basic blood types -- A, B, AB or O -- without causing serious, even fatal, complications. This universality makes it crucial to have a supply for trauma patients who could bleed to death in the 20 minutes it takes to test and match blood.

A majority of blood donors in Southern California -- 57% -- are non-Latino whites, according to Red Cross figures; 23% are Latino.The local Red Cross is targeting Latinos in an effort to "make our donor population match our patient population," Herron said.But because blood donors must present photo identification, potential donors who are in the United States illegally often fear detection, said Dr. Alexander J. Indrikovs, an associate professor of pathology at the University of Texas Medical Branch in Galveston.Other barriers to increasing blood donations among Latinos are cultural."

Many of us come to the U.S. with a culture that is not a culture of donating blood," said Indrikovs, who is originally from the Dominican Republic. "We see it as necessary only when a family member needs blood."Until that changes, Indrikovs said, "we are going to be seeing increasing shortages."

Family donations used to be more of a tradition in the United States when hospitals charged a "replacement fee" for transfused blood and families and friends of patients could pay it off by giving blood. Changing insurance and billing practices did away with that fee.

Today, the two nonprofit groups that supply most of the nation's blood -- the American Red Cross and America's Blood Centers -- rely heavily on college and corporate blood drives and on regular donors who give more than once a year. Families that host blood drives tend to do so because their personal experience has shown them how vital it is to have blood available when it's needed.

But in Mexico and many other Latin American countries, Indrikovs said, it is far more common to sell blood than to donate it. In the United States, only plasma, the fluid part of blood, can be sold, and it is used in making some blood products. By law, only donated blood can be used in transfusions. Health officials believe that payment can motivate people to lie on questionnaires meant to screen out drug use and other health risks.

The donation rate in many Latin American countries, Indrikovs said, is less than 1%.Changes urged The Bioethics Center's Caplan argues that blood banks nationwide need to streamline questionnaires, especially for repeat donors, keep longer hours and make the process more inviting for all donors."

We haven't made blood donation as painless, as simple and as rewarding as it should be," he said.

For now, blood banks and hospitals juggle supplies and pray they get through holidays. So far, no hospital has run out of blood. But nationwide, 135 hospitals reported canceling elective surgeries on one or more days because of blood shortages in 2004, the most recent year for which statistics are available. That year, just 4.5% more blood was available for transfusions than was used, the smallest margin ever measured.

Blood suppliers aim to have a three- to five-day supply on hand to distribute to hospitals in case of emergencies. As of Friday, American Red Cross Blood Services of Southern California was down to about a 6-hour supply, or 217 units of O positive blood and 35 units of O negative, the most versatile of all.

Lots of Medicine

We are still home and just making our daily trips to the Cancer Center for antibiotic refills and blood tests. Ben has been a little grumpy and tired lately, but you can't really blame him considering how tough the past few weeks have been. He has been put through a lot. We were also told that the steroids can cause mood swings - thank goodness he only needs to take them 5 days a month - we don't want any roid rage incidents! :)

He needs to take quite a bit of medicine orally during this phase so he is not too happy about that but I think we have a good system down so far and he is being a good sport. After we get through the antibiotics over the next week this phase should be pretty easy as long as he doesn't get any infections or fevers. Ben told me he wants to carry Purell in his pocket to school and will be careful not to hang out with anyone with a runny nose!

If all goes as planned he will only need the antibiotic pump until Friday and then it will come off and the PICC line will come out. Ben is still nervous about the actual removal of the PICC line but I know he will be happy to have it out for a few weeks.

We did our back to school shopping so now the boys are totally ready with backpacks, lunchboxes and clothes. They even have their homework done and ready to turn in so we are just hoping there are no surprises between now and Wednesday!

(Kitten update: Shaggy (or Shag Master S as David calls him) was given the all clear yesterday and is totally healthy. Now we just need to try to stop him from stealing all the food from the other cats - he has almost doubled his weight in the past few weeks! He has certainly been a fun new addition to the family!)