Wednesday, December 29, 2010
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.
Saturday, December 25, 2010
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.
Monday, December 20, 2010
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.
Saturday, December 18, 2010
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!
Thursday, December 16, 2010
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.
755 Petaluma Blvd.
We'd love to see you there!!!!
Tuesday, December 14, 2010
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.
Tuesday, December 7, 2010
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!
Saturday, December 4, 2010
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!
Friday, December 3, 2010
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?
Wednesday, December 1, 2010
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 firstname.lastname@example.org. Thanks!
Tuesday, November 30, 2010
...but chicken soup will do! RJ is well enough to start eating for the first time in over two weeks! Yesterday's menu included Jello, Popsicle and yes, chicken noodle soup. And true to his desires, the very first thing to pass his lips was....drumroll please...Dr. Pepper. So far, it's sitting well and we think that soon he'll be working his way down the food list that he started putting together when he couldn't eat.
RJ was a little down yesterday morning so his Uncle Kevin came over and they spent the afternoon watching JackAss (blog central will deny ever bringing that DVD to the ward - it's pediatrics for goodness sake) and by the end of the day he was laughing and seemed much happier. He still isn't talking very much because he was on the ventilator for so long, but he is beginning to use his voice again and we expect that to be back to normal soon.
We'll keep you posted on the menu for today.
Monday, November 29, 2010
First off, apologies to everyone for the lack of posting yesterday. Blog central relocated our headquarters and were without internet services all day.
Yesterday was a good day - probably the best day RJ has had since this whole thing started two weeks ago (amazing how much things can change in just two weeks). He woke up feeling good and Jessica took advantage of that by inviting people to visit. Although blog central was busy with the move, we sent one of RJs peers to the hospital and he reported that everything was 'awesome'. He was able to look at all of the cards and packages for the first time and really appreciated everything that you all sent him. Little things like a card or a note are real morale boosters and as the days and weeks drag on he's going to need little pick-me-ups more and more so keep it up! If you've been wanting to visit, contact Jessica and something can probably be arranged in the next week or so. There's a fine line between visiting and exhaustion, but having people around really seems to help keep the dark moods away.
One of the negative effects of the chemo that RJ is going through is the fact that his hair will probably fall out. He's decided not to cut his hair short before it happens, so he's going to just wait for it to come out on his own. I don't know - I think RJ will rock the bald, and I'm sure he'll get a new collection of great hats.
Word on the street is that the hospital is going to transfer him out of ICU and back to the regular ward in the next day or two - stay tuned and we promise to keep you posted.
Saturday, November 27, 2010
There is a rumor that the doctors are thinking about moving him off the ICU and back to the regular pediatric ward. That, combined with the fact that he will hopefully start feeling better late next week may mean that people can come and say hello soon.
Our donation drive is going full force - we've had some amazing donations both through the blog and in the mail. Thanks to all of you, some of the financial worries that have been hanging over Jessica's head will be eased and you're making sure that RJ can sleep in his own bed as soon as he's ready.
Friday, November 26, 2010
Blog central took another field trip to the ICU today and things are pretty much the same, which is to say that RJ is getting better slowly. He looks great without the breathing tube and the room is so much quieter without the swish of the machine. The doctors are trying to unhook him from anything invasive and have removed as many IVs and tubes as possible to lessen the chance of infection.
Today was the third day of a four day chemo regimin and he's still pretty sick from that. While he can talk now, he prefers to stay pretty still and quiet. His pain seems to be managed pretty well and RJ spends most of the time sleeping or just quietly in his own space trying to get better. While he doesn't seem to need us in the room as much, he seems to like us there as long as we're quiet and don't bug him too much. Jessica is reading THE HUNGER GAMES to him and he really likes the sound of her voice to the point where he doesn't want anyone else reading to him. We've heard that these first two rounds of chemo are the toughest, and we're hoping that he'll get to have some good days in the weeks to come.
Thanks for all of the cards and letters. We're keeping them for RJ for the next week or two because we want him to be able to fully enjoy them - so keep them coming.
Thursday, November 25, 2010
In the morning, RJ had his second day of chemo that had to be administered directly into his spine. It's as icky as it sounds, but they sedated him so that he didn't feel any pain from that procedure. Despite a fierce headache and nausea, the doctors felt that he was well enough to get the dreaded breathing tube taken out, so late in the afternoon they took him off the ventilator. We were all so happy for him, but unfortunately, RJ was so sick from the chemo that he wasn't able to appreciate the moment. It's so hard to realize that the medicine that they have to administer is basically poison - it kills the bad cells, but it does horrible things to the good ones too. We're all hoping that after these four days of chemo are over that he'll be able to have a few good days without a breathing tube and much less pain and nausea. As far as ups and downs go, this day was basically a draw.
Wednesday, November 24, 2010
True to the roller coaster metaphor, yesterday was a downer but today we're climbing back up. Blog central got to spend about an hour with RJ this morning and he looks more like the old RJ then he has since he got to the ICU. The swelling in his limbs and abdomen has gone way down and his color looks good - no more redness. One of the nurses said they had a 'spa day' yesterday and helped him clean up and combed his hair. We've heard several comments from staff that even though he is sleeping with tubes coming out of everywhere, they can see the RJ is one handsome guy. We concur.
Now that he is back on the 'old' ventilator, RJ is doing most of the work breathing which is a lot harder than it sounds at this point. He started a new round of chemo today and word on the street is that it will run for four days. We always thought that 'chemo' would be a special bag of medicine delivered on a silver platter and administered with much fanfare, but in reality it is a bunch of little bags of different medicine delivered over time without so much as a salute.
We don't want to jinx anything (and we here at blog central are nothing if not superstitious) but we heard it directly from a doctor that if the chemo that he began to get today doesn't mess up his system, the breathing tube might be able to come out very soon. That is what RJ has wanted for so long that it's hard not to get excited over the mere thought. RJ has managed to get to a good place with all of this - when he's awake, he's really calm and just wants people to sit with him, and he spends a good deal of time asleep and allowing his body to get better.
Tomorrow is Thanksgiving. While you're sitting down to turkey and pie with your loved ones, make sure you hug them extra hard. We've seen firsthand how quickly an ordinary life can change.
You never know who knows who. Barbara, fabulous member of the sisterhood and wizard of working connections, sent Olympic swimmer Gary Hall a message about RJ's condition and we got this letter in return. Jessica thought that it would be great to post it for everyone to see:
Heard one of the swimming community had picked a fight with Burkitts Lymphoma. Well, I’m writing to express my support. I’ve been fighting with diabetes for almost as long as you’ve been alive now and I’ve won some rounds. I too am a swimmer. I swam in three Olympics and had my share of tough sets. Those tough sets make you stronger. They make you tough. They prepare you for the tough fights we all have to face at some point in our life. At 13 you’re fighting a good one. You can do this. Hold on. Don’t give up. I’m cheering for you, along with the rest of the swimming community. I’ll offer two lines from two different poems my grandfather used to recite to me when I was your age with the hope that it might offer some encouragement in the big fight.
Somebody said that it couldn’t be done,
But, he with a chuckle replied
That "maybe it couldn’t," but he would be one
Who wouldn’t say so till he’d tried.
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: "Hold on!"
Maybe we’ll go for a swim when you get better. Good luck!
Gary Hall, Jr
Tuesday, November 23, 2010
We just moved to Sebastopol and my younger son Devin goes to Brookhaven. My older son Scott is 14. Scott was diagnosed with Bukitts when he was 6. He spent 6 months at UCSF. He is now almost 8 years in remission. We went through the same scenario with the abdominal pains and getting diagnosed. So glad to here RJ's was caught so early. I pray everything goes as well for RJ as it did for Scott. The battle is just beginning.
Unfortunately, it was anonymous - we'd love to get in touch with you if you don't mind. Would you please email email@example.com ? This was particularly helpful and we'd love to have you talk to Jessica so that she will feel less alone and be able to ask questions from someone who's been there.
Only one day in and we've gotten a wonderful response on our fundraising efforts and we here at blog central can't thank everyone who donated enough. We've received amounts from $5 to $500 and every single one is appreciated more than you know. RJ is going to have to learn to accept help from other people. This is a kid who, when a bunch of friends are being taken out to ice cream will claim he is full because he doesn't want that parent spending money on him. We at blog central know that it is an honor to be able to help out any way we can.
It's been a day of ups and downs on the front. We were on location last night in the ICU and RJ was looking much better. They had lifted his sedation and he was conscious again, although the agitation and fear that had been hanging around several days before wasn't nearly as bad. They changed out the ventilator to the one he was using before and his lungs look to be making progress. He still really wants people around, and in addition to the nurses and visitors, there is now a medical 'minder' that sits with him to make sure he doesn't pull out the breathing tube or any of the other tubes running over and through him.
In a good news/bad news situation, the doctors feel that RJ is stable enough for the next round of chemo tomorrow but that it will likely make his condition even more critical. The tumors in Burkitt's lymphoma can double in size every day so they need to be hit hard with very toxic chemo which will likely make him very sick again. Such a double edge sword. It's hard to hear all of the things that could go wrong in the next few days - we just have to wait and see which of them come true.
Hold on tight and send your best thoughts - it's going to be a bumpy ride.
Monday, November 22, 2010
Many of you have been asking how you can help Jessica and RJ (and now baby Courtney) as they work through the most difficult situation of their lives. We have an answer. It's crude, it's direct, but it's the truth - they need financial help.
See that shiny new DONATE button over there on the right? Clicking on that will bring you to PayPal where you can make a donation direction from your bank account if you are a member of PayPal, or from your credit card if you aren't. It's super easy. Jessica will be able to put these gifts directly into her bank so that she can start to pay her mounting expenses. You can also send a check made out to Jessica Romero to:
c/o C. Jaynes
1042 Glen Dr.
San Leandro, CA 94577
We've often said here at blog central that we don't know how Jessica is holding up so well. Throughout everything, she has stayed in the moment and is the picture of strength. Some of us at headquarters have a tendency to worry more. Why?
*As a fifth grade teacher and a single parent, Jessica has only 34 paid days off before she has to take unpaid leave. Unfortunately, unlike other districts, the Santa Rosa City Schools district where she works won't allow other teachers to donate their sick days which would allow her to get more paid days off. Right after Christmas, she will no longer have an income until RJ is better and she can return to work.
* We want to make sure that RJ has a home to come back to when he gets 'days off' from the hospital. He should be able to go home for a few days or a week between chemo treatments and we want to make sure that paying the rent isn't a problem so that he can sleep in his own bed in his own room. One short term goal is to get six month's rent and utilities paid so that this isn't a concern.
* Medical expenses are going to be high. Beautiful Courtney is going to require several surgeries to repair her bilateral cleft lip and we can't begin to imagine the bills that will come in from so many days in the ICU. Another short term goal is to make sure their insurance premiums are paid for the next six months. Long term, we'd love to help her cover some of the high costs of getting RJ well again.
Many people have talked about raising money to help. There will be a car wash in Sebastopol very soon (hopefully on a non-rainy day) and we'll keep you posted.
Just to show what can happen - several of RJ's friends made a sign and went door to door in their neighborhood. A big shout out to Linzey, Rene, Jeff, David, Sophie, Katrina, Leo and Shale - as of this writing, they've raised over $600 that they will deliver to Jessica in the next week. Thanks guys, for showing the adults how it's done!
Every little bit helps. We've heard of kids saving their allowances to give to RJ. One family is figuring out what they would spend on holiday gifts for the extended family and donating that amount instead. Whether you can spare $10 or $1000 (and if you are the kind of person who can spare $1000, we'd love to meet you) every amount is acknowledged and appreciated more than you know. It's not just money for Jessica and RJ - it's piece of mind that things are being taken care of so that they can focus on healing and coming home for good.
Thanks so much for your support! It truly does take a village.
Sunday, November 21, 2010
If we had ordered up the most perfect baby from room service, this would be the one. Beautiful, utterly content, uber-smart and possessing an impeccable sense of timing, Courtney is charming everyone she meets. Despite fears, she is able to nurse like a champ and watches everyone intently with her big, wise eyes. In the next day or two she'll get to meet one of the most important people in her life - her big brother RJ!
It has been an amazing night here at the front and Jessica and RJ send their love and gratitude right back at you all. We're going to sign off now, not because we're getting sleepy, but because we drank a giant cup of coffee before we came and well...you know. Good night troops.
Saturday, November 20, 2010
All news from the front lines is good so far today. Looks like sedating RJ was a great decision, as his vital numbers have been really good for the past 24 hours. His lung function is improving and the doctors are thrilled with his kidney function. Overnight, they swapped out the old ventilator for a new one that should be gentler on his lungs and cause fewer long-term problems. News sent to blog central this morning is that they were able to reduce the oxygen levels on the new ventilator to 50%. Weaning him off of the machines to the point where he can breathe on his own will likely be a step down process as they swap around equipment and medications.
One thing about RJ - he has an amazing metabolism. We saw this the first few days as the doctors tried to find a level of pain medication that would ease his discomfort - they were giving him adult sized doses and it wasn't touching the problem. We saw it again yesterday as they worked to keep him sedated constantly. They gave him enough medication to sedate a horse, and an hour later, he began to stir and struggle to consciousness. More than anything RJ wants to be in control and work to get himself better quickly and unfortunately, right now the best way to do that is to take his consciousness out of the equation entirely.
The thing that's hard for his caregivers is that touching RJ at this point seems to interrupt his sedation, so it's pretty much a hands-off policy. When he is conscious, he wants you to hold his hand or touch his leg - contact with other people is really important to him, but anything that might interrupt his healing has to be avoided. Even though he is asleep, we're sure he can still hear us so we make sure that we have positive conversations while we are in the room. Depending on his level of sedation, just hearing the voice of someone he loves can cause his heart to race and his oxygen numbers to fluctuate, but as much as we want to lean down and give him a big hug, it has to wait until he's more stable. Sometime soon, he's going to be hugged so hard and so long, he's going to be sick of us.
Friday, November 19, 2010
Mid morning, the doctors did a bronchioscope (sp?), looking down into his lungs and hoping to clear them, but there wasn't much mucus to bring up. The thinking is that he probably has a lung infection and they're waiting for tests to come back before they can start him on the proper medication. Every time RJ woke from sedation, panic would fill his eyes and we had to tell him all over again what was happening. The agitation was making his oxygen saturation numbers plummet as his physical panic and being intubated had him physically working against the respirator. About 1pm, the decision was made to keep him under deep sedation for the next several days so that both his mind and his body have a chance to rest and recover. As soon as he was settled in sleep, his oxygen saturation reached really good numbers and we're hoping that they'll stay that way.
On the bright side (and we here at blog central must always look for a bright side), his kidney function is improving in a big way and his other numbers are going in the right direction. If we can only get his lungs to heal, we'll be on our way. Because RJ is sleeping, he won't be able to read your comments, but Jessica and her family are keeping track of everyone's good wishes so please keep leaving them. And as soon as he wakes up, RJ will be reading all of the back entries on the blog.
This is the support board that RJ will see when he does wake up:
Your cards and pictures really brighten up the room.
Thursday, November 18, 2010
You might notice that we've changed the blog name from Friends of RJ (which we all are) to RJ's Army. We here at blog central have been thinking that this really is a war and every day is a battle - some days you win and some days you don't, but you always need to keep your eyes on the prize. Everyone one of us are troops in the Army and we all have our specific functions as we support him at the front. Fine. We'll stop with the military metaphors now. But you get what we're saying.
Today was a not so good day - not so much medically as emotionally. When you're trapped by tubes and machines, it's hard to remember that it won't always be like this and RJ was having trouble seeing past the suck of today. In the scheme of things, he's making amazing progress but it can be hard to see through the forest of medical paraphernalia. One of the high points was pushing through a treatment that he'd been dreading - a percussion 'massage' where they shake up his lungs in order to move the mucus and get them working on their own again. He was really anxious about the treatment, but went through it with flying colors and we're all so proud of the way he handled it.
Jessica and RJ love that so many people want to visit, but at this point we have to discourage 'drop in' visits to the hospital. He is in the ICU under intense supervision and many treatments by doctors and nurses every day. There is a strict two person limit in his room and we are trying to let him get as much rest as possible. If you are close to RJ, you can contact Jessica by email or text (no phone calls right now please) or Cynthia at cyn(at)cjomololu.com and we'll try to figure out a good time. As soon as he's moved onto the regular pediatric floor and the breathing tube comes out, visiting will be much easier and he'll be thrilled to see everyone.
Thanks also to everyone who stepped up to watch Sophie! She's going to stay with Alex because he is taking such good care of the chickens as well, but it's nice to know that we have so much backup. After the baby is born we will likely have meals and childcare requests that we'll toss out so everyone will get more than enough chance to do something to ease the situation.
Keep watching the blog for daily updates as we crest this particular hill and march our way into the next challenge.
1. That the words 'pediatric oncology' are ever said together.
2. That RJ needs a tube to breathe. Which also makes it so that he can't speak.
3. That he has to make a list of all the foods he wants but can't eat right now.
4. That every bodily function is painful.
5. That nobody can tell us the answer to the ultimate question: When?
6. That the medicine that will make RJ better will temporarily make him feel crappy.
7. That he is exhausted, but can't sleep more than an hour or so at a time.
8. That it will be awhile before Sophie can lick his face again. (Sophie is the dog, so really, that is okay.)
9. That the joy that should surround the birth of his sister is overshadowed by worry that she will come before things are stable.
10. That one mother, however strong, is asked to carry such an unbearable burden.
11. That RJ missed out on the last warm days of the year, stuck in a darkened room.
12. That he has absolutely no control over anything.
13. That he is always hot. Or cold.
14. That there are so many tubes sticking out of him they are impossible to count.
15. That the machines that keep him going beep constantly.
16. That it's hard to hold his hand or hug him properly because of all the tubes.
17. That you have to watch his fear and frustration, knowing there is nothing you can do to help.
18. That no amount of wishing or praying will make it all better right now.
19. That this blog has to exist at all.
We however, are eternal optimists here, so we had to include a few things that don't suck (at the risk of sugarcoating the truth):
1, That both RJ and Jessica are truly amazing people.
2. That his type of lymphoma has a very good success rate.
3. That while the tumors grow quickly, they die quickly too.
4. That they have so many people around them who will do anything to help.
5. That even through all of the incredible pain and frustration, RJ can still make you laugh.
6. That his bone marrow and spinal fluid are clear.
7. That this truly sh*&ty time won't last forever.
8. That the hospital is full of wonderful, caring doctors and nurses who focus on RJ.
9. That his room has a fast internet connection.
10. That one day, this will all be an awful memory.
That's all we could come up with here at blog central, but you have to give us a break as it is approaching midnight. Feel free to add to either list in the comments below.
Wednesday, November 17, 2010
Jessica had a little 'baby moment' overnight when it looked like she might be going into labor. She spent a good part of the day downstairs in labor and delivery but when they found out that she wasn't in active labor, they sent her back upstairs to be with RJ. Nights continue to be difficult - RJ's distress level seems to get worse overnight and he only sleeps about an hour at a time. There is usually one other friend or family member with her there so that she can sleep in small increments. Because he is in the ICU, there is a pretty strict 2 visitor limit so at this point, not many people can come and say hello, despite the fact that RJ really loves having people around. As soon as he gets moved to a regular room he should be able to have more people come and visit.
The big question in RJs mind has been "is it tomorrow yet?" He knows that every day they take X-rays and do tests to see if they can remove the breathing tube and wants to know if it's time to check yet. He's been asking what day it is so that he can calculate how long all of this has been going on. Jessica's friend Sharon made him a giant wall calendar so that every day can be marked off with a big X so that he'll know when it's tomorrow which looks like it's going to be a big help.
All of the Facebook and blog comments have been a real spirit lifter for everyone - keep them coming! Everyone has been asking if they can help, and right now there is something that Jessica and RJ need - someone to look after their dog for the next several weeks. Sophie is a medium sized short-haired dog, very friendly and loves to run around. Anyone who lives near them would be perfect. If you think you can help with this, please send an email to: firstname.lastname@example.org
RJ and Jessica are now several days into this difficult journey, but remain as strong and positive as ever.
Tuesday, November 16, 2010
In situations like this, you take good news wherever you can find it, and it found us today! One of the markers for severity and treatment options for Burkitt's is if the cancer cells have traveled through the body and found their way into the spinal cord and central nervous system. We got word today that RJ's spinal fluid is clear of bad cells, which isn't just good news, it's GREAT! HUGE! WONDERFUL! The next big test result will be the bone marrow and we should know something tomorrow about that. His kidney function is 'heading in the right direction' (to quote his nurse) and hopefully his lungs will improve enough in the next few days to get rid of the hated breathing tube. That is the thing right now that is driving RJ crazy. The medication is breaking up the tumors in his intestines really quickly and his swollen stomach has returned almost to normal.
RJ today is a huge improvement from the RJ of just a few days ago. Yes, he has a tube in his throat and can't talk (although he is becoming really good at writing things quickly) and yes, he is covered with tubes putting things in, taking things out and keeping track of other things - but he is RJ through and through. His maturity and humor are showing through even during the most difficult times. His big request today was for Dr. Pepper-flavored lip balm for his chapped lips. Then he erased that request with signs in the air and asked for 'all of them'. A team was dispatched and soon he was in possession of an entire pack of soda-flavored lip balms. He is making a long list of all of the things he wants to eat and drink as soon as he is able - a giant Slurpee from 711 made the list today. Watching TV is hard because all of the food commercials are torture to someone who can't have any food by mouth.
When I arrived in the ICU this morning, RJ was busy showing his Facebook page to the nurse so that she could see some photos of him when he wasn't lying flat on his back in a hospital bed. Please - if you have a Facebook account and you're a friend, write on his wall. He has a laptop and still wants to be part of the world at large. I told him about the blog and asked him how much we should tell people about what he was going through. His eyes got wide and he made a big circle with his arm. It took us a few seconds to realize that he was saying 'everything'.
So we will do our best to tell you everything in the days, weeks and months to come.
Monday, November 15, 2010
Welcome to the first post of the Friends of RJ blog.Today was the first step in what promises to be a long journey for Jessica and RJ. This morning, he was diagnosed with Burkitt's lymphoma and began an aggressive chemotherapy regimen that will likely last for months. As of this writing, he is sedated and his pain is managed while test results come in and countless questions are answered.
So how did this happen? RJ has always been extraordinarily healthy. If you've met him in person, he is so broad and tall that he looks like he is at least 16, although he is only 13. He swims competitively and bikes all over town. All of this was true until late last week when he began complaining of stomach trouble. Knowing that he never complains, Jessica took it seriously and brought him to the hospital on Thursday. Thinking it was just a common problem, they treated him briefly and sent him home. After the symptoms worsened, he was brought back to the hospital, where test results showed that it might be something more serious.
MacMillan.org and Hanna's Hearts of Hope.
We all expect that RJ will be one of the many success stories and beat this disease. Research in the past few decades has brought a much better cure rate for lymphoma than at any time in the past. RJ and Jessica need everyone's love and support during this difficult time.
So what can you do to help?
* Watch this space for updates. We will try to post at least once a day to keep everyone informed of his progress and anything the family needs.
* Send cards and letters. RJ will love getting mail from people throughout this process and we will make sure to get it to him right away. You can send mail to:
c/o C. Jaynes
1042 Glen Drive
San Leandro, CA 94577
* Comment on this blog! Jessica and RJ (when he's able) will see all of your supportive words so feel free to leave a comment or two.
* Many people have asked if they can donate financially. We are in the process of setting up a special bank account and PayPal link for people to contribute a gift to help defray the cost of medical treatment. Jessica will be taking a significant amount of time away from her teaching job and many of you know that there is another baby on the way. Any financial gifts will be more than welcome as they face this challenge. Watch this blog for a Donate button in the next few days.
There is also a fundraising concert in the works - we will post news as soon as we get it . For now, send your positive thoughts and wishes to RJ and everyone who loves him as they face the toughest journey of their lives.
Thanks so much!
Friends of RJ
(If you can only see this first post, click HERE to see the rest of the entries.)