Buh Bye Tumors!

The first symptom of RJs illness was incredible stomach pain. After several days and two CAT scans, the doctors found several tumors in both his large and small intestines and diagnosed him with Burkitt's lymphoma. With this type of cancer, the tumors can double in size every 24 hours, but luckily, they can shrink just as quickly with proper treatment.

RJ had another CAT scan on Monday and the results came back yesterday - the tumors are gone! This is the news that everyone has been waiting to hear and we're all so thrilled for him. The treatment is difficult but it is working.

Blog central got to visit with RJ yesterday afternoon and he made a valiant effort to participate, but ultimately he slept in a recliner most of the day. He did wake up to eat some pasta and have his favorite Berry Best smoothie which was encouraging. This seems to be the pattern - five days of chemo followed by over a week of pain, nausea, headaches and fatigue. Despite fears, he managed to get through this round of chemo and recovery without having to make a return trip to the hospital. His blood counts look great, kidney function is strong and his lungs are clear. It's ironic, but except for the whole cancer thing, he is actually a really healthy kid.

We're hoping that he'll feel well enough in the next few days to eat lots of high-fat foods and visit with his friends before going back for another round of chemo on January 5th. RJ got his very own iPad for Christmas which means that he can keep in touch with friends on Facebook much more easily as well as make all of his friends jealous with such a high level of cool. Watch for him on a computer screen near you.

Merry Christmas from Blog Central!

Rolling truffles always gets us here at blog central in a contemplative mood and this morning was no different. As we were scooping chocolate and rolling powder, we got to thinking about all of the miracles that have happened in the past six weeks.

It really is a miracle that RJ is with us and doing so well. On the last visit to the hospital, Jessica talked with several of the ICU nurses who were with us during the scary days and it became very clear just how badly things could have gone. Blog central will never forget one seasoned ICU nurse, looking at RJ heavily sedated, swollen almost beyond recognition and on a loud aggressive ventilator saying, "I've seen worse get better." Its frightening when that is the most positive statement that can be made. But he did get better, and will continue to do so until the chemo therapy is over. As of this moment, RJ is home with his family despite a visit to the ER yesterday. We all hope that he gets to spend this Christmas in his own bed, and know that by next Christmas, all of this will just be a bad memory.

The doctors and nurses at the hospital were each a little miracle on their own. So attentive to both RJ and Jessica (and baby Courtney when she arrived), so accommodating to the unusual situation and so supportive in their own professional way. It is to their credit that this Christmas is joyous rather than somber. The giant pile of presents that arrived from the 5th floor yesterday for all of the Romeros went above and beyond the call of medical duty.

The community that came together to help Jessica and RJ is one of the biggest miracles of all, and we don't mean just the Sebastopol or Castro Valley communities, but the people far and wide who focused on any way they could help. Throughout this part of the journey there have been so many small but amazing moments. Classmates who went out on their own to raise money, a rockin' benefit last week that raised several thousand dollars (still waiting for photographic evidence of such - nudge, nudge), a teacher who held her own raffle of handmade jewelery, Christine at Swiss Delices who gave 30% of her profits last weekend and continues to raise money with the "Jessica and RJ tip jar", landlords who have been very accomodating and even offered up their vacation house for the auction, people who have taken it upon themselves to get utility bills reduced and secure corporate donations, the friends and neighbors who made RJ's first homecoming so special, the many generous donations that continue to come in through the blog (you all continue to amaze every day), the family who made special RJ and Courtney cards to show that a donation had been made in relative's names in lieu of gifts this year (waves to Jill) and all of the amazing cards and blog comments that really brighten the darkest days.

Everything that has happened since RJ's diagnosis has shown that now, more than ever, it not only takes a village to raise a child, but to help save the life of one too.

Merry Christmas to everyone who reads this. Give all of your loved ones an extra hug from blog central.

End of a Rough Visit

Today is the last day of RJ's five day chemo hospital stay, and he's glad to see it go. It was difficult to walk back into the hospital again, knowing what was ahead and with the memories of what happened last time he was here, but he faced it bravely. Although he's said that it wasn't as bad as he thought it would be (and we can only imagine how bad he thought it would be), it's been a long five days. As with all things medical with RJ, it's been difficult to get the nausea under control so he's felt sick most of the time despite all of the staff's efforts. He's been trying to eat six small meals every day, but most days we're lucky enough to get a window of feeling good to cram in just one.

If all goes well, he should be able to go home today and rest for about two and a half weeks before the next round of chemo. Because his whiteblood cell count will go down sometime in the next three to four days, he has to basically hibernate and avoid other people and our germs until the neutropenic phase passes and he can join the world again. Everyone is hoping that he'll get through this phase without getting sick and having to return to the hospital - we all want RJ home for Christmas!

Thanks again for all of the cards and packages - RJ loves opening all of the things that come and they really put a smile on his face, even when he's in the middle of a bad patch.

Bakery Benefit - TODAY!

Longtime friend Christine Clement's Castro Valley bakery Swiss Delices is giving a generous 30% of the profits from all sales today (excluding custom cakes) to the Friends of RJ fund!

20669 Santa Maria Ave. in Castro Vally (right next to the Village). 510-881-8669 They're open until 6:30 so swing by, pick up something sweet and do some good!

Benefit Concert - Monday, December 20th

At the Aubergine Café in Sebastopol, a team of Jessica’s friends and supporters, are hosting Smile Acoustica!, a plethora of local acoustic musicians getting together to play a whole bunch of music and raise a whole bunch of money for Jessica and her family.

The music begins at 5pm and ends at 10pm. Some of the musicians include Ali Weiss, Bill Iberti & the Stimulus Package, Skiffle Symphony, young singers/songwriters Maria Mandrussow & Katherine Paige, and a few more special guests.

The requested donation is $20 per person (although no one will be denied for lack of funds). There will also be a silent auction with many goodies donated by local friends and townspeople. If you enjoy wine, there will be plenty for auction. All funds will go directly to Jessica and her family.

Aubergine Cafe
755 Petaluma Blvd.
Sebastopol, CA

We'd love to see you there!!!!

Round Two

RJ, Courtney and Jessica made a visit to blog central today on the way to chemo round two tomorrow. RJ is due to check into the hospital tomorrow for five days of chemo and if everything goes well will be able to go home on or around the 20th. He's armed with new pajamas and robe, Jessica's laptop and a stack of inappropriate-for-pediatrics DVDs. It's going to be weird going back to the hospital again, but we just keep reminding ourselves that things are VERY different from a month ago when he first arrived. A lot has happened in a month and we keep hoping that the worst is over. These past few days at home have given everyone perspective and it has shown RJ and everyone around him that there is an end to this disease after successful treatment and that life will be normal again one day soon.

One thing that has returned to normal is his appetite - blog central personally witnessed the scarfage of an entire burrito and big bowl of ice cream. This apparently topped four waffles and several slices of pizza early in the day. The boy is six feet of skinny right now so we're cramming as much into him as we can.

As part of the treatment, RJ is sporting a really crazy hairstyle right now - blog central was able to take a few keepsake photos, but we've pinky-swore that we won't post them to the blog and we have to honor that. The closest we could come is to picture RJ's face on this bird and you've got some idea of what we're dealing with. You've got to hand it to him - RJ is owning the chemo hairstyle with pride as visible evidence of everything he's gone through and we're glad we got some evidence of it before it's all gone.

Baby sister Courtney is even cuter if that is possible - she really is a pretty easy kid these days, spending a lot of time just noodling around and watching the goings on. Blog central got a photo of her surrounded by four doting boys and we have a sneaking suspicion that this won't be the last time. We're enjoying having all of the baby items in the house and getting some baby time in, although blog central's husband keeps reminding us that we are too old to have more kids. If we could get one like baby Courtney we might just take a chance.

We'll keep you posted on how the hospital stay is going as we count down to the next time the family gets to go home.

Home Again!

RJ is HOME! We're all so thrilled that he was well enough to go home yesterday until his next round of chemo. Courtney was introduced to her house for the first time (having spent the first two weeks of her life in the hospital with Mom and brother) and RJ finally got to sleep in his own room. We're told the homecoming was very emotional on a lot of levels, helped no doubt by the well-stocked fridge, clean house and not one, but two Christmas trees that were left for them.

Even though RJ is home, he still has to do many of the same things that he did in the hospital - he has a line in his chest for medications that have to be administered around the clock. His appetite is improving, thanks in large part to Karen's famous Chicken Parmigiana, smoothies from Berry Best and a whole Sequoia Burger. Now we have to fatten him up so that he can regain the 30 pounds that he lost.

Even though he tires easily, RJ was spotted around town today. He made a guest appearance at his school and was welcomed by all of his friends (which he loved) and talked about tutoring and homework (not so much). One of our junior associates at blog central was on Facebook chat with him this evening and when asked how it felt to be home, the answer was, "awesome".

Barring any illnesses or emergencies, RJ will be able to stay home until the 15th, when he has to go back to the hospital for five more days of chemo. If all goes well, he should be able to come home again once he is stabilized, and that pattern will continue until treatment is over several months from now. Now, more than ever, even though the end to this process seems very far away, it is visible in the distance.

Due to RJs improvement, we here at blog central are going to cut the blogging down to a few times a week, or when there is important news to give so be sure to check back regularly.

Welcome home Romeros!

Getting to Know You

Despite the setbacks, RJ is tired but feeling pretty good. Blog central popped by for a visit and to bring him the cards and packages you've been sending which really helped cheer him up. Baby Courtney has been hanging out in his room and RJ is already showing that he's going to be an awesome big brother. It doesn't hurt that Courtney is an amazingly obliging baby - she just chats and waves her arms around as she surveys her new world. She had the first meeting with the cleft lip team and they've started to use tape on her lip just to keep it from getting wider before she has her first surgery down the road.

We think they make a pretty cute team!

Jumped the Gun!

There was a benefit for Courtney originally scheduled at Aubergine in Sebastopol this Saturday - IT HAS BEEN POSTPONED! If you received an email invitation, please disregard. The new date will be December 20th - details to follow.

So It Goes

Bags were getting packed up, the fridge was getting stocked and Jessica was getting briefed on how to take care of RJ at home between chemo treatments because he was scheduled to be discharged from the hospital today. We say was, because RJ spiked a fever in the middle of the night and was transferred to isolation with an infection. That means that until he stabilizes, he can't have any visitors, which he was really enjoying and was helping to keep his spirits up.

RJ is now what they call neutropenic, which is when the white blood cell count drops to really low levels and he basically has no immune system to ward off all of the common bacteria and viruses that we all come across every day. This happens to most people on this kind of chemo, usually about seven days after the course of treatment starts, although the level of illness and the length of the problem really varies from person to person. He has a fever and his throat is really sore, so he's back on an IV so that he can get some nutrition because eating is really painful. On top of all that, it seems that there was a leak the last time they administered the chemo directly into his spine so he's been having blinding headaches. To fix this, he has to lay flat on his back until the situation resolves. Basically, a bummer all the way around.

Hopefully, he'll bounce back quickly and they can be headed home for a few weeks between chemo treatments. On another note, one of our readers emailed the Dr. Pepper company in Texas because he is such a fan and they wrote back asking if there is anything they can do to help! What do you say blog readers? What should the Dr. Pepper company do to make RJ's next few months more bearable?

Even Better

Blog central got to see RJ for the first time in a few days and we couldn't believe the difference yesterday. When we arrived, he was sitting up in a chair talking normally and the amount of tubes he's hooked up to has been reduced by about 75%. He'd had a few bites of burrito for lunch and is moving on to other solid foods. Right now he's not restricted at all in what he can eat, but apparently there is a time during chemo when his immune system will get really low and he won't be allowed to eat any fresh fruits and vegetables or anything with a high likelihood of bacteria because he can't fight infection as well. We don't think this restriction will extend to burritos. Or Dr. Pepper.

We left one of our junior blog central members with RJ to watch a movie (actually, as we recall, the boys encouraged us to leave) and went for a walk on Piedmont Ave. with Jessica and Courtney. We haven't mentioned the baby recently, but she is just awesome and makes us wish we were younger so we could have another baby. She is nursing just fine, although her timing is typical of that of a ten day old baby. Wanting to nurse when you're out in the cold of Piedmont Avenue - of course. Nursing when you're in a rocking chair in a warm, comfortable room - not so much.

PS - Paloma, we blocked your comment yesterday because we really want to be careful about giving out private information on a public blog. If you see this, email me at cyn@cjomololu.com. Thanks!