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....
Tuesday, March 25, 2008
Thursday, March 13, 2008
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.
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.
Tuesday, March 4, 2008
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.
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.
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