A Memorial Fund

Our wonderful friends have set up a fund in memory of JR as many people have asked us what they can do to help. In lieu of flowers, we wanted to make this fund available as follows:
JR Schoen Memorial Fund
Citi Smith Barney
399 Park Avenue, 12th Floor
New York, Y 10022
In addition, they are working on a foundation that we will use for making something good come of all this sorrow and hope to announce a fund raiser in the months to come. Thank you so much for the outpouring of condolences. We are so touched by how much JR meant to so many people.

Arrangements

JR's wake will be held at Lawrence Funeral Home on Monday July 21st from 2 to 4 pm and from 6 to 9 pm. The address and phone number is 2119 Post Road, Darien, CT ph. 203-655-6127. I believe they also post information about the arrangements on their website, www.lawrencefuneralhome.com. Many of you probably know that the home is part of Cyndee Rogers' family business and I wanted to let everyone know how generous the Lawrence family has been with us. Please don't hesitate to thank them for taking such good care of our son. We are also in the process of setting up a foundation for donations in lieu of flowers and will provide that information as soon as it becomes available. We, of course, hope to help other children suffer less and survive this deadly disease. No child should die like this.
In addition to the wake, the funeral will be at St. Luke's Episcopal Church, 1864 Post Road at 11:00 on Tuesday, July 22nd. We hope this will help begin the healing process. It's still impossible to us all that this has happened and we think of him every minute. We will let you know more as the plans unfold. I just can't get my hands or my heart around what has happened and I'm still in total denial. He had an automatic spot in heaven.

My Beautiful Boy

My beautiful boy left this world today in search of brighter shores. He died on July 16th, 2008 at around noon surrounded by many of those who will always love him dearly, including both Jim and me. It seems impossible that this has happened to him and we will never live a moment without thinking of him. Addie will miss her big brother. We will let everyone know what the arrangements are and will also post them to Lawrence Funeral Home's website (in Darien), so please check it if we are not able to let you know personally. We are all devastated and will never forget all the love we have felt from everyone. God Bless our son. He will be with us forever.

We're Home!

I wanted to let everyone know that we arrived home last evening. It was very hectic getting out of the hospital and I wasn't sure if it would all happen - getting prescriptions filled, dealing with the ambulance, getting the nursing service set up at home, etc. It all came together and it was a very emotional departure - we've had wonderful and caring help at MSKCC and I was nervous about doing it all at home. Upon arriving at home, I was greeted by Jim and his mom (who has come to stay to help out) and my "3", that is Andrea, Patricia and Kimberly, all there to help and make the transition for us much easier. The visiting nurse came and went through all of our medications, etc. and ordered an oxygen machine that was delivered later that evening. Addie was out at Movie Night at AYC and arrived home at 10:45 PM!!! She is happy that her brother (and her mommy) is home. Andrea and Patricia stayed ALL NIGHT (until 6:30 am) so that I could finally get a night's sleep which was absolutely delicious. Everyone's getting to know how to help with repositioning, feeding, giving medication, etc. so that I can spread out the responsibility here and there. That's it for today - I just wanted to let everyone know that we're home and JR seems very calm and peaceful and very much loved. Thank you so much to everyone for lending a hand and once again for all the wonderful prayers.

In God's Hands

I don't think of myself as a particularly religious person - I don't make it to church much, haven't really had the kids involved in Sunday School and I can't say that I look around and all I see is God's creation. After all, I'm an engineer by way of education and science tends to train us to look for concrete proof and I don't remember getting much out of sitting in church as a kid (I didn't mind being in the choir since I could sit with my choir buddies and giggle and pretend I was singing).
However, despite my attempts to dismiss these beliefs, they become a part of you whether you fully embrace them or not. These beliefs saturate you and define you in times of need. At this point in JR's journey, I feel as though he is in God's hands and I am comforted by visits from two of our ministers from St. Luke's. It haunts me that I haven't exposed JR to more of the church as I feel he, too, would feel more love and less fear if he were taught more of what the church has to offer. I can only hope that he feels safe and loved even without the formal schooling. I'm sure that all the prayers going on out there are surrounding him as he struggles.
To update you on this leg of the journey - we made it back home on Thursday (6/27??) to find a hospital bed lovingly set up in our living room (thank you mom and Kimberly) and all sorts of support from our local hospice folks. The several days between my last posting and the day we returned home were not a lot of fun, some seizures, some chemo, etc. but we got JR stable enough to get him home. We even had him out of bed, in his wheelchair and even standing (mostly on his own). He played a few games of Connect 4 and we got some giggles out of him which always does so much for the soul. Every person from our immediate families visited (and then some). Dr. Yasmin Khakoo, neurologist extraordinaire had taken over the helm of JR's care quite a few months before and she was very supportive of getting him the heck out of the hospital.
At this stage, I need to say a little more about Dr. Khakoo (like "CA - KOO") and J.R.'s team. We've been so blessed with caring people. Dr. Khakoo would sit on the floor of her office and play Break the Ice with JR, ask about the hamsters, ask about school and has truly been a friend and advocate. She has a son born the same year as JR and we heard about his 10th birthday sleepover and we've just relied so much on her knowledge and judgement. I don't know how someone can devote their life to kids with brain tumors and not become desensitized but she's the whole package. I always feel a sense of relief when she gets involved because I know that she has JR's and Jim's and my best interest at heart. We've been hoping that his treatments would alleviate some of his symptoms and trying like hell to keep him with us. I know her heart is breaking, too.
So back to having him home. We spent the weekend of 7/28 learning how to care for JR, how to give him his medications (he has a feeding tube so everything goes through that), met all the hospice people and started figuring out our new routine. Jim and I were pretty overwhelmed at first and nervous that we'd mess things up, but managed to get things under control. Addie spent that last week of June with Jim's brother and sister-in-law Kevin and Carolyn up in Andover, Massachusetts where she was super-spoiled by her two wonderful college-aged cousins, Lindsay and Holly. That, I'm sure, will be one of those special lifetime memories for Addie and everyone went all-out to make her feel special. She even had a private horseback riding lesson!! Well ex-cuuuuuuse me!!! Addie returned home on Saturday to find us all there and missing her terribly. Of course 2 seconds after she got home and hugged us all, she wanted to go play. Anna up the street took her in and showered her with many cute hand-me-downs and we were treated to a fashion show later on that day. The next day she got her Julia fix (best pint-sized buddy and Kimberly's daughter) and was so happy.
We managed things for a few days and JR unfortunately had a scary seizure on Tuesday morning (7/1) and I ended up calling 9-1-1. I wasn't sure if he was breathing and we ended up at the ER in Stamford Hospital once again. Sidebar but when the paramedic was at my house, he put 2 and 2 together and realized that I am his wife Kathy Gottlieb's friend from ages ago. He said he could tell her that he saw me but wouldn't be able to say why. Another sidebar but the Nurse Practitioner at Stamford Hospital used to work at Sloan Kettering with, you guessed it, Dr. Khakoo and Dr. Dunkel and all of our friends at the POU. Amazing.
We were awaiting a room for overnight observation (for hours on end) and were told that they were just getting our room number but as red tape would have it, they chose not to admit him there as his case was too complex for their comfort, so off we went to Sloan Kettering by ambulance once again. And here we remain.
We've now been here a week and it's become extremely frustrating. The poor kid has developed super high blood pressure, a ridiculously high heart rate and is still having seizures. So not only have we not figured out his anti-seizure medication but he's more frail than ever. We've had some wonderful moments when he's suddenly aware and hanging out with us but mostly, he's sleepy and having a hard time. It's so brutal and unfair.
So, here we are. I struggle with the bring-him-home/keep-him-in-the-hospital seesaw. I want him to be home more than anything but I want him stable enough and possibly on the mend but I have no reassurance that we are getting there. It's excruciating. I have long conversations with him about going home and what home is and who he is to us. I like to keep bringing up all sorts of fun things we've all done together and remind him of his favorite things. While we were home last week, Addie and Jim went out and caught some fireflies and bought them up to JR. He was definitely interested and we were hoping that he was picturing himself running around catching some in the yard. I'll stop at this because memories are starting to flood and so are my eyes. Kimberly just called me and we both just lost it. Time to take a deep breath and continue hoping and praying. My friend Amy Hurley is here to lend her support and just gave me her signature bear hug that felt incredible. We are praying for miracles here and miracles do happen and why not for us? You never know.....

Lots of Twists and Turns

So much has happened since my last posting that I am shocked when I see that's it's been an entire month since I've touched base. Today is June 21st - the summer solstice, the first day of summer. Time for BBQ's and swimming pools, sailboats, vacations and beaches. I hope everyone reading this is able to enjoy all the great things summer has to offer!
Let's see.....we made it through the Mother's Day episode, the shunt, etc. and kept on track for a period of time, coming off steroids, continuing to receive treatments, etc. but not really feeling like JR was back to feeling like himself just yet. He was still weak and not always able to pay attention. I would sometimes find myself getting frustrated with him, thinking that he was just used to getting his own way and resisting me, so sometimes I'd do some teeth gritting to get him to take medicine, pay attention or whatever it was I was trying to get him to do. It would usually work, so it reinforced to me that it was his choice to drift off to never never land. After all, he is a nine year old boy and nine year old boys don't always say "how high" when I yell "Jump!" Imagine how guilty I felt to learn that he wasn't necessarily able to control himself but was having some physical difficulties. It's heartbreaking.
We went for his regular treatment on June 3rd, my birthday (33rd), nothing of note to report there. We were just finishing up his steroids at the end of that week and hoping that we would see a change back to himself. He was eating huge quantities on the steroids and that was starting to slow down and I decided that I thought it was a good point in time to just let him be on nothing for a while. It made him pretty tired and not too enthusiastic about things. I was really trying to get him to go back to school to finish up the year on a positive note and feel like a part of his class. His class, in the meantime, had sent home the cutest poster with huge letters made out of pictures of the kids spelling out "We Miss You", adorable. It was great to have him home but he just didn't feel well and I felt so bad for him. We tried to rally to go to the Sugarbowl, etc. (local luncheonette) but just didn't want to do anything and often felt shaky when he walked. I just figured he was healing but instead of feeling better he just kept feeling more tired and more sluggish.
So at 4 a.m. on Wednesday morning, June 11th, Jim woke me up to say that J.R. was not responsive. He was having a seizure and we called 9-1-1 and went off to Stamford Hospital in an ambulance. We were then transported to NY Presbyterian via ambulance. That was a pretty eerie ride since we had done the same thing last August on our first day of this chapter of life. We were admitted to the pediatric ICU, treated with some anti-seizure medication, given an EEG (like and EKG but for the head) and sent over to Sloan Kettering (referred to as "Memorial" by the staffers) for a brief day of monitoring. That Friday night (Friday the 13th) we went home, a little nervous but always happy to come home.
Now we're at Father's Day weekend. Saturday was a pretty good day, it seemed as though JR was getting better, had a couple of meals, seemed pretty alert, etc. Sunday morning, however, he just wasn't with it. He managed to walk from one room to another with some help (he hadn't walked for a few days) but he was a lot more "lights on nobody home". We were worried. We called the doctor on call at Memorial and he told us to bring him to the local emergency room. I just wasn't doing that. He was stable and the thought of waiting for an ambulance to take us back down there, etc. was too much to consider. He asked us if we had some Ativan at home. Luckily, we did and gave him a dose and brought him straight to Urgent Care (the "ER"). At least all 4 of us were together for Father's Day. We made the best of it. He was admitted and CT-scanned and tested, etc. and ultimately sent "across the street" meaning transferred back over to the Pediatric ICU (the "PICU") at NY Presb. Cornell. This involves taking an ambulance to go exactly one city block. JR had video monitoring to try to catch these seizures as they were happening but had none during the monitoring. This lead the doctors to believe that it was just progression of the disease and that we should prepare ourselves for the worst case scenario. At this stage, JR is pretty much just sleepy and we were incredibly distraught.
JR's "team" at Memorial just wanted to get him back "across the street", so we again boarded the ambulance (Addie came with us this time, school finished on 6/19) and this past Thursday (6/20), we came back over to Memorial (where we remain today). Both Thursday and Friday were filled with many visitors all hoping to help JR feel better and encourage us all to hang in there. We had all of our respective immediate and extended families come and it has been amazing to feel the love.
Even today, we are still not sure about exactly what is happening as we have had a few seizures and some more monitoring and nothing captured on the monitors, frustrating us and the entire staff here at the "Pediatric Observation Unit" here at Sloan, commonly referred to as the "POU", pronounced "poo". This is a quasi ICU but not a fully equipped ICU, so anytime a true ICU is needed, across the street you go. We thought we'd be home by now and will be as soon as he is more stable.
Where to go from here, you ask. Good question. We are going with our gut feeling which is to keep trying to conquer this disease which is causing all this trouble. I think that if we can keep JR stable enough, then we can keep giving him his treatments and hopefully be victorious. That's my gut and I have to go with it.
As always, thanks for taking the time to check in on us and I hope to be updating you with some great news soon. Until then, tell everyone you know to keep the prayers coming. We should be home soon and will be so grateful! Enough of this hospital!

Back on Track

OK so it's been crazy. I'm glad I posted an entry in April because it seems as though there hasn't been a free second since then. Anyone who has seen my house at the moment can immediately identify me as someone with way too much going on. Or someone with adult ADD. There have been some dark days in there but I feel like we're back on track.
Let's see - over the past several weeks, J.R. was having some headaches as the doctors were trying to keep a tolerable mix of steroids and other medication. Unfortunately, the mix wasn't doing the trick and the headaches got worse. We had a few emergency room visits but the CT-scans et al were telling us that nothing drastic was going on so we weren't overly concerned but, of course, hated to see JR going through pain. We've had such high hopes that his treatments would negate the need for all this medication but it just wasn't working fast enough. He had mentioned double vision a few times and was always so tired. He was also so hungry all the time from the steroids and just completely not himself. He tried to go to school but I'd get a call from the nurse about an hour into school and I felt cruel even trying to send him but he really wants to feel like a normal kid.
We managed to have a couple of fun times in between all this. We attended Hindley Happening, a local school carnival with lots of rides and everyone in town wandering around. It was fun to feel 'normal' for a little while. We had front row tickets to the Mets game for Mother's Day, courtesy of Lars Noble, JR's baseball coach and the folks at Kelly Real Estate (his in-laws). From what I understand, the Kelly's box seats are right on the Met's dugout, so we were armed with baseballs and hats to sign.
Mother's Day ended up to be a very different day than we had planned. J.R. had a lot of difficulty through the night and claimed once that he felt like Jello and had some pretty severe vomitting, etc. We knew where we'd be first thing in the morning. Well, first thing in the morning ended up to be about 5 a.m. when J.R. was very ill and not exactly with us for a while. The details are very scary (I'll skip them) but it's the type of scare that will stay with me for the rest of my life. Jim said call 911 and I resisted for some reason, just wanted to get to Memorial Sloan Kettering where all of his doctors would understand his condition. We threw him in the car and drove him down there (we were extremely lucky but also extremely stupid to have done that - I totally should have listed to Jim). By the way, if you think you should call 911, call 911. I've been comforting myself with "all's well that ends well" but the truth is, I took a risk where I shouldn't have. Luckily, we got there with JR sleeping on my lap and Jim at the wheel. Addie got dropped off at our neighbor's house somewhere around 6 a.m. and spend Mother's Day with her other mother, Kimberly. Side note, Kimberly's son Nicky spent the night in the hospital just a week before that with a very broken arm, so you know how hard it was to make that phone call at 6 a.m. on Sunday morning of Mother's Day. Thank God for our incredible neighbors. There is no thank you big enough.
So we're at the hospital and we get JR stabilized (some other details we'll gloss over) and the doctors aren't quite sure what is going on and they really won't for a couple of days. He's either having seizures or "pressure waves", meaning he has "water on the brain" which can substitute for the medical jargon. Causes pressure and headaches and all the things that were happening. He gets put on a bunch of different medications and monitors and gets transported (by ambulance to go literally across the street to NY Presbytarian) to the Pediatric ICU (Memorial doesn't have a proper ICU suitable). He reamins pretty stable for a few days and we determine that he is not having seizures but indeed having pressure waves. The best and longest term solution to this is to implant a shunt in his head (more details to skip...). So last Wed. (5/14), he had a successful surgery (minor compared to his other surgeries) and was transported back (another across the street ambulance ride) to MSKCC and was discharged last Fri (5/16). He's been exhausted but the headaches are gone. The wind is kind of out of his sail at the moment but he's been through so much. We are anticipating that we'll see our little guy back in full swing over the next few weeks. By then, he'll be off these steroids and it'll be summer!! The thought of summer always lifts the spirit, even as a decrepit old shell of my former self, I always feel good at the thought of summer.
Our chemo plan was pushed off a week, but we managed to fit in a few follow up MRI's this past Tuesday and Wed. and JR received his chemo one-two punch all on Wed. (yesterday). So we don't know which end is up. He doesn't seem to have much as far as side-effects from this chemo but there's been so many other issues all clouding our analysis here.
It's finally time to simplify! Going forward, we'll be just doing our chemo and antibodies every two weeks (looks like we'll be able to keep it on one day and not have to go in 2 days in a row), have an MRI here and there and get off all this extra medication. As of this moment, we feel back on track and just moving forward, leaving this ugly period behind. Let's hope the next blog has very little to say - something like - "things are great, nothing much to report". Sounds good to me!
One more side note - we may all have our political opinions, etc. but please put Ted Kennedy in your prayers as he is also experiencing exactly what our son is experiencing and no-one on Earth deserves to have this happen. I hope that he can help shine a light on these horrible brain tumors and ultimately bring some progress in curing this cruel disease. Thanks for reading.

Time to Kick Some Butt!

We've had some crazy twists in the road over the past several weeks. Just over two weeks ago, JR started feeling very ill and the morning that we were going for his first "antibody" treatment, he started feeling some strong headaches that resulted in a pretty uncomfortable (putting it mildly) stomach. We got to the hospital and the doctors were able to control his symptoms, gave him some medication, he slept and felt fine. They decided to go ahead with his first treatment and we left feeling OK about everything. We thought perhaps he was just really nervous about having his port accessed and knew that he had a lot of questions and anxiety over it, so it made sense but I had never seen him have such a strong reaction and wasn't totally convinced that we were just dealing with a nervous tummy.
He felt OK for a day or two and attended a birthday party 2 weekends ago and I got a call that he had gotten sick at the party and frantically went to go get him. He had already rejoined the party but was tired and a little bewildered. That day was also Jim's birthday and we were having a couple locals over that evening to celebrate. JR just wanted to go to bed and wasn't feeling well again. He had a quiet day with Jim the next day as Addie and I went with some of her classmates to see a little play in New York (and finally over to American Girl Place for a quick purchase). That Sunday night/Monday a.m. turned into a very difficult time for my very strong son. I decided to bring him in to the hospital on Monday, ended up staying over Monday night and had many scans, tests, etc. He checked out fine and we were home Tuesday evening, only to have symptoms return and we ended up back at the hospital on Wednesday morning, stayed over Wednesday night, more tests, scans, etc. and finally a spinal tap which ended up providing some clues to our confused doctors. Not pleasant clues but nonetheless, revealed to us that we really need to get started with his new chemo and confirmed that the course of action we were already planning was one that was a promising long-term solution to a nasty and tricky disease. A plan for his short-term discomfort and symptoms was also devised and has kept J.R. doing a lot better since last week. Scary stuff.
So to reward him for all he's been through, we brought him back to the hospital today for another scan and his now-routine day 1 of antibodies and tomorrow will be day 2, chemo. We'll be repeating this "one-two punch" every two weeks for the foreseeable future. Not exactly what the average third grader would be hoping to do over his Spring Vacation week, but if he's less sleepy than he was today, we'll try to do a little Manhattan tomorrow. Addie will be in tow and the weather is supposed to be fantastic, so let's hope we squeak in a little fun! I would love to encourage everyone reading this blog to take that vacation, go on that trip, don't try to be too practical, experience all those magical times because it's impossible to get that time back and it's all we really remember when we look back. I can't wait to start planning. I was eavesdropping on a conversation that J.R. and his buddy Nicholas had in the back seat of my car a couple of weeks ago when Nicholas posed the question, "What was the most happiest day you've ever had?" to which J.R. responded that it was probably in Disneyland last year (and interestingly enough was exactly one year ago today when we were there). It's a great question to ask yourself and/or your children (and you can always remind yourself, as Homer Simpson would put it, "The happiest day of your life so far") and figure out what makes great memories. I wish lots and lots of them to all. I feel strongly that the best is yet to come.
As I step off my soapbox, I wanted to leave you with one last little profound thought that Jim and I have adopted as our latest motto: "Time to Kick Some Butt!" We're convinced that the aforementioned one-two punch is going to do it this time. It's not going to be a walk in the park and it's not going to happen tomorrow but we have a good feeling about this new plan. My friend Sheelah Quinn sent us a little wall-hanging the reads "Faith is the place between where things are and the good things that are sure to come." That's where we are right now.

What's Next

We met last week with JR's team to get his stitches out and to hammer out a new plan of attack. Interestingly enough, the neurosurgeon (Dr. Souweidane) actually took the time, sat in a little office and took JR's stitches out himself. He even went out and got him an apple juice when he said he was thirsty. When we walked into the office, Dr. Souweidane had an MRI scan on the computer screen and JR asked him, "Is that a brain?" to which the Dr. answered, "Yes, in fact, it's YOUR brain." I was a little worried about how JR would feel but went on to ask some great questions and even wondered if those two protruding things in the front were his eyeballs and was fascinated to learn that they were. The scan looked great and JR even wanted to know what it looked like before the operation and the doc was great with him and showed him before and afters, etc. I was relieved that his simple curiosity didn't turn into something that he really didn't want to know. All in all, he did great and they barely shaved any hair this time so you'd never really know that he had stitches.
I also met with the oncology team while JR had some play time in the playroom. He created this huge crab picture that apparently some artist studio in Brooklyn is supposed to add to some big mural. We're supposed to visit the studio possible in May. We're calling JR the guest artist for the day.
The new plan is starting next Wed. (4/2) for an infusion of antibodies, then every two weeks after that, he'll have an infusion of antibodies on Wed. followed by chemo on the following day (Thurs.). So in other words, every 2 weeks, he'll be there for 2days in a row (except the first time he'll only have 1 day). This will last for 4 to 6 months (??) or until something changes. Hopefully he'll be able to handle this as well as he did with the last chemo (doctors seem to think that it should be roughly equivalent). We'll keep close track of blood counts, etc. just like before. The biggest difference to him will be that the chemo will no longer be oral but that's why we have the port. I just hope and pray with all I have that this will do the trick and that it won't be too brutal. Feel free to join me.
We are enjoying a little break in the action right now. JR looks and feels good and even wants to try a little school tomorrow. He's out with the "boyz in the 'hood" playing and running around in the afternoons which helps more than anything else any of us can do for him. I've said it before but fresh air and exercise is huge here. I'm glad that this next phase is starting while the promise of great spring weather is teasing us all. Seeing him (and joining him) out there enjoying himself does great things for my soul, too.
I'll let you know how this routine plays out. I don't expect anything too huge that first day but I am a bit worried about the ongoing schedule. By worried I think I mean panicked. I'm sure he'll be fine but mama just hates to even think about these things, let alone watch him experience them. He just does it, though, all without much fuss. He's the greatest and I mean it! Until next time....

My Boy is Amazing!!

Most of you have heard by now that JR's surgery last Thursday was very successful and that he is recovering at record pace. We are all counting our blessings and couldn't be more thankful to JR's skillful surgeon. Somehow, I think I just totally expected (for a second time now) a perfect outcome and knew it would be alright but I have to admit that fears do find a way of creeping in despite our most profound efforts to keep them out. Low and behold, here I am reporting to everyone that he did great and continues to amaze us all. He hasn't complained, he just goes with it. He had some very understandable anxiety over getting out of bed and walking while he was in the hospital but he has this amazing ability to take a deep breath and really work through his fears. I can physically watch him do it. The trick is to give him his space (without my usual nagging and hurrying) and let it happen. It really is an awesome quality to have. Once he got out of bed and walked once, he's motoring around like nothing ever happened, proud as punch. Talk about proud....Jim and I are bursting.
JR will have some down time and we hope to start having his tutor back shortly and try some academics. We are so lucky that he's a good student and is able to keep up with school. I have to say that while his curriculum is well thought-out, we go through some of the stuff and just by-pass. We just focus on the major important things and don't sweat the small stuff. Actually, we try to do that with everything. Perspective, perspective.
JR's next phase of this battle is kind of brutal and is the hardest for me to face. Again, he'll probably sail through and be fine but I just feel so sad for him. He'll be changing his chemo treatments (unfortunately it won't be oral this time) and going in to Sloan-Kettering either each week or hopefully every other week for the "infusion". While undergoing his surgery, he had a Mediport inserted in his chest so the IV line and the fear of poking around finding a vein will be a lot easier. I had no idea, however, what a serious procedure the port insertion was. So aside from a head full of stitches, he has stitches on his chest and a little bump that will give access for future IV's. He truly does just go with all this if you can believe it. I just hope and pray that this new chemo protocol doesn't make him too ill. It really is the hardest thing to face and I look around at the pediatric floor of the hospital and see a lot of other boys running around feeling fine and I am inspired. It's into the world of the unknown for us. By the way, one lesson I've learned is that each day is a day into the unknown and that anything can happen. Even your wildest dreams.
JR is asking me if we can go out to eat right now (as we did yesterday). Yesterday he ordered about 5 different things and had a couple bites of each. Impossible to say no to those big blue eyes so I must sign off right now and find a good mac n cheese fix. I'll update you shortly but thank you to all for such wonderful notes and deeds.

Back to the Drawing Board

It's amazing how things can turn around in a heartbeat. Since my last posting when everything was looking perfect and the doctors were so happy with his progress, JR has had a setback. Sometime between Jan. 3rd and Feb. 20th, JR's tumor reappeared and has taken us all by surprise. Needless to say, we are all devastated and didn't know what to do with ourselves. JR had to return for many additional tests to confirm our worst fears.
Since learning about this, we have been waiting and worrying. It's time to start over and get back to our "positive thoughts only" mindset. Jim and I met with JR's team last week and were completely shocked when we walked into the meeting and saw his neurosurgeon from his operation last August, Dr. Souweidane. I'll never forget Jim saying to me just before we got there that "I hope they don't recommend surgery for him." But as soon as we saw the surgeon, we knew. The surgery is set for this Thursday, March 6th.
We know that this news is not exactly light. However, after we had time to digest all of this, we were actually relieved. We were expecting to hear that they would be going forward with a more potent chemo (which I imagine will come afterwards) and we were so upset knowing that it might or might not do what it's supposed to do. This way, the surgeon says he can get a little more aggressive with the operation as they have more information about the nature and "center" (as I'll call it) of the mass. Hopefully he'll get a little more of the sort of root system and he'll be at a much bigger advantage when starting the chemo with less tumor to deal with. So it's basically almost like starting over and we are grateful that we actually have the chance to start over.
So it's back to the drawing board with a little extra information and not in emergency mode like the first time around. The knowing and waiting is not pleasant but at least we'll feel a little more prepared.
Anyone with connections to the "big guy" has our permission to pull strings, beg, plead, twist arms, etc. to get past all this ugliness and find out what good is supposed to come of this. It better be huge. We look forward to finding out. Please pray for our son.

We're Still Doing Great!

This is just a quick update to say that we really have very little to report. JR is on his last day of Round 4 (of 10) of his chemo and is doing remarkably well. Most of the time, he starts feeling pretty crummy even after the first day or two, but this time he has been feeling totally normal. I keep asking him if his tummy is OK, etc., but he keeps telling me that it's fine and his appetite has been good. Although I do anticipate that he'll start feeling tired and a little beat up over the next week or so but he doesn't complain of any symptoms, miraculously. He truly is unbelievable. We spent last Thursday at Sloan-Kettering so that the staff could monitor him while he took his chemo because he developed a crazy rash during the last round, but it seems as though the rash was unrelated to his medication. They wanted to make sure that he didn't develop some allergy to the chemo, which he didn't, so all day of sitting around and waiting for something to happen was somewhat unproductive but we were happy with the outcome. Better safe than sorry.
JR has his next MRI a week from Wednesday (Feb. 20th), so PLEASE keep that positive energy radiating!! It's a very difficult thing for Jim and me but of course, JR just lets it roll right off his back. He has overcome his overwhelming fear of the IV line (which he needs to have before the MRI) and is more brave (or braver??!!) than ever going into this process. I think of what a wimp I am when I need to go get a cavity drilled, I tense up and practically pass out each time. Here's JR going to get needles and sit in a noisy, claustrophic imaging machine, having had some very bad experiences getting his IV line and he has trained himself to be calm and brave and told me that he's not afraid of it anymore. It's so inspirational to get courage from your own child. You never know where you'll learn your life lessons. He's my hero!!
I totally believe that this next scan will be fine and I will update all my loyal readers as soon as possible after the scan. Thank you again for taking the time to keep abreast of his progress. Namaste!!

A Sigh of Relief

Hope everyone was able to experience some wonderful and magical moments over the holidays. The kids get so excited, it's nice to think back on our own holidays when we would wake up on Christmas morning and be "wowed". Jim was saying that he and his brother Kevin would lay awake in their bunk beds and swear to each other that they heard Santa's sleigh bells and vow to stay up all night to see him. Somehow he magically slipped in and out during that one brief moment when they must have nodded off into dreamland. Of course we were up later than normal on Christmas Eve, having spent the evening over at Cousin Chris and Andrea's, celebrating Kalle's 4th birthday, having a great meal and coming home to our now traditional Christmas Eve of reading Polar Express, putting out cookies, milk and carrots and sprinkling the reindeer food around outside. All I kept thinking was that for J.R. and Addie, this is their memory to keep and how incredibly precious this time in life is for all of us. Of course it was hard to keep our minds from wandering but it only helped to strengthen our resolve to make this holiday very special.
I try to keep this blog focused on JR as he has had to endure so much more than the rest of us and probably understands a lot more than I realize, but it's difficult to talk about his experiences without including others around him so I do apologize again for the fluff but I'm just so fluffy, what can I say!! (now there's a run-on sentence for you!!) He did mention that he wished that Santa could use his magic and make all of this rotten stuff go away. We are hoping that this has happened as he wished but that we need to keep checking to make sure.
We visited the hospital yesterday (with Kimberly by our side) for another MRI and had the doctors gitty with excitement over his scans - no change from the last MRI and that was the best news we could have ever wished for. It takes me a while to process this good news and I try very hard to keep it all in perspective but can breathe a sigh of relief for now. It's only after this sigh that I realize how incredibly anxious, sad and distracted I get by this and that it is truly wasted energy. It's completely natural but it takes away from what we have. So for each of you reading this, please breathe the same sign of relief and stay positive! He's doing great! He starts his chemo again on the 10th of Jan. and every 4 weeks until the end of July when we reevaluate and see where we go from there! Two places we know we're going from there is Cuttyhunk in August and Hawaii sometime after that, thanks to the Make a Wish Foundation.
2008 is here and is already feels so good. Thank you again for showing your concern for JR and our family and all the wonderful cards, gifts and prayers we got from so many people. You are all helping so much. Happy New Year to all!!