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 firstname.lastname@example.org ? 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: email@example.com
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.)