updates on the boys

Wow it has been awhile since I lasted posted....

Owen had two weeks without chemo treatment, and then a MRI last Thursday. We got his results from Dr. Cole, the neuroncologist, on Monday. The tumors have stayed stable and the contrast has become less bright. The doctor assured us they think this is a good thing, but has not found any research to explain exactly what it means. I have to do more research myself, but so far it is my understanding that NF affects children and adults so differently that there is much that is still unknown. Anyway, Owen continues on with the same plan of action. Four weeks of chemo, two weeks off, and he'll have his next MRI in three months to check on his progress. He is continuing to make progress with his gross motor skills...getting very close to walking and he is starting to even move around on his belly more, trying to scooch forward to grab for things. He sees his PT, Karen, every Monday before we head down to CHOP and he really works hard for her. He is scheduled to see the feeding team at CHOP in two weeks for an evaluation, hopefully we can get him eating more.

Joey's big news this past week...his football team played the half-time football game for the Temple game at Lincoln Financial Field, home of the Eagles. Driving down 95 on our way to the game, passing the stadium, Joey admits he was really scared because of all the people that would be there. But once he was sitting with all his teammates in the stands you could see how excited he was. On the field, he was jumping up and down hardly able to contain his excitement. What an incredible experience for all the boys. Tomorrow is Joey's last game of the season. I am pretty sure he is ready for it to be over for the season...I myself am a little sad.

pickle head...

I need to give equal time to my other boy...also one with many sides, even though he is normally pretty even tempered. It has taken a lot for Joey to get fired-up and aggressive for his tackle football games. But at Saturday's game, Joey kicked it into gear and had 4 tackles. He was so super-proud of himself...probably not near as much as Joe and I (running up and down the sideline) were. Awesome!

The many moods of Sweet Pea

My dad deemed Owen "Sweet Pea" a few months ago. Dad has a way of creating a nickname for you and it sticks forever...I am still known to my family as messy Jessie, my brother has a number of nicknames that have stuck with him since childhood and Joey has been Pickle Head since he was a toddler. So Dad spends time thinking of a name that will really fit each one of our family members...Owen can definitely be a Sweet Pea but recently he has been really showing many sides of his strong personality...especially when it comes to how he interacts with Joey. He LOVES his brother, but lately he snuggles up to him and then the minute Joey goes in for a kiss or cuddle Owen screeches, gives a growly face and pushes Joey away. So when I was trying to capture the reason for Owen's most recent visit to the ER (a face plant on concrete) I found that these closeups really capture his personality of the moment...the many moods of Sweet Pea.

we are home...

It is so wonderful to be back home. Owen was given his chemo and we were released this afternoon. He is exhausted but getting back to his normal self. When we got home he snoozed for a couple hours and then spent the rest of the evening walking around and being smothered by his brother who missed him tremendously. Very thankful for the continuation of the Jewish New Year...no school again tomorrow, Joey is bummed because although he had off today, he has school tomorrow. Owen and I are going to relax at home, other than a physical therapy and speech therapy (feeding consult) in the afternoon, I am hoping it will be a pretty uneventful day.

in for 36 hours...thankfully just a head cold

Owen was admitted at CHOP for a fever on Sunday. Turns out it is just a head cold but they will hold him 36-48 hours for observation. At this point if everything continues to go well he should get his chemo in the morning and then they will release him. Last night he was up the majority of the night, hard to sleep with all those tubes connected to your chest...but tonight he is sleeping well...and I am up. We are in the transplant wing of the main building, the closest room open to the oncology unit in which there were no rooms available Sunday night. Our window overlooks the emergency room and I am amazed by the amount of children and parents that are always in the waiting room, especially in the evenings. It is quite a busy place. I guess you get used to it but I find it super hard to sleep here, I have graded all the school work I brought with me, read a magazine and am now working on a novel Joe's mom bought for me but I am a little bored and can't wait to get out of here. The transplant wing of course is filled with patients that will be here for a while. Their doors and windows are colorfully decorated with their names and well wishes. Like I said I guess you get used to staying here...but after 24 hours I start to get a little stir crazy. Aimee always laughs because she is such a home body and she says that I love to be on the go. I tend to try and argue with her, I like to be at home, but that isn't really true. Even in the summer when I am not working, the boys and I are constantly moving. There was about 3-4 days in July when the truck was being worked on and I figured we would just hang at home, not go anywhere...but Joey and I must have pushed Owen in the jogger stoller over 6 miles those days walking down into town for coffee and bagels and to the pool. I am pretty sure I am also raising boys to be just like me...Joey loves a plan (what are we doing next) and Owen in a low gutteral voice asks for the truck or lately "car" each morning. I get why Aimee loves being at home and Becky's ( a close friend that lives in Erie) life of a slower pace has always appealed to me but I just can't seem to do it...So Owen and I are ready to bust on out of here. He has gotten pretty good at saying door, car and bye-bye to the nurses that are in and out of the room. I love including pictures on the blog and I obviously have no way of doing that tonight...but I took a sweet shot of Owen in his cage like crib...can't wait to spring him outta here...

Race Day...

I can't yet find the words to capture my feelings and the complete experience of being in a race with over 16,000 people...I'll try by just expressing grateful I am for the support I had from my family, dad...you did an amazing job it was so exciting to start off running with you and seeing your strong finish, mom...excited and bubbling over, eager to volunteer and have Joey right there by your side, Aimee...I thought you were nuts to join us after Camporee at a 5am pick up just to hang out and wait before the race even started but my race would not have been the same without you...I need you by my side---lets just leave it at that (I have to teach today and can't start off all mushy),Joey and Owen...my two funny guys, everyone on the NF team just loved watching you play around, Joe...as I turned the corner to the finish seeing you standing there with Owen in your arms pushed me to finish strong...

It was an amazing day, a huge accomplishment and it made me want more, well as soon as I heal...

Enough THANKS couldn't be given for all of your support and donations to my fundraising efforts and the Children's Tumor Foundation. On Saturday night at the NF endurance team pasta dinner I recieved an award for fundraising. I must say I didn't do much...I really only thought I would raise $1,000. But all of you helped to raise over $6,000 and I still have donations to mail in...At the spaghetti dinner we saw a film about NF research and it really hit me that Owen needs this research...he needs this foundation to find a cure, so THANK YOU, THANK YOU, THANK YOU for all of your support.

I'll post more later, maybe at 4am...

my thoughts seem to flow better...

no sleep 'til RACEDAY...

It is 4 am and I can't sleep. It is funny because for the past week I have been setting the alarm for 4:30 to make sure I get to the gym to run. The whole week, I haven't been able to drag myself out of bed. But today I am up...nervous, excited, feeling somewhat sick about race day.

I will be up the same time tomorrow getting ready to leave at 5am for the big race...I woke up this morning thinking...knowing I haven't done enough to prepare for the race. Throughout the summer I trained, was reading article after article about running...totally getting into the whole idea of running a half marathon. For the past month, it feels like I have done nothing. Don't get me wrong, I have been exercising...but it's been different, like I am dragging myself through every workout. I know a lot of it has been because I am back to work full time and with Owen back at CHOP every week and Joey with school and football...but lying in bed this morning I couldn't help wondering if I sabotage myself. I think I do this. I think when I get close to a goal I do things to make sure I don't reach it. Not with everything, but with somethings I go full force ahead until I just about get to the end and then stop. Aim...if you are awake, you are really good at these things...you probably know why I do this. I also know I am anxious about meeting everyone tonight at the NF team spaghetti dinner. There are about 100 of us running for the NF team in efforts to raise money for the Children's Tumor Foundation. I am looking forward to meeting people that live with NF, since I haven't met many...most of the parents I meet at CHOP, their children are going through chemo just like Owen, but for many different reasons. I think it is going to be very good to meet families and people with NF, but I also think it is going to be very emotional. It is probably the emotional kick in the butt that I need to get past this whole stopping before I get to my goal thing.

I know I set out to blog about my kids...but I just needed to rant...thanks...I will surely post after the race tomorrow. On a lighter note Owen had his first "car" shopping cart ride last night. Between that and the lollipop he had at the bank, he was a giggling maniac. Funny Joey quotes over the past couple days, "Barack Obama needs to win...he has a smile on his face everyday I see him." My mom thinks maybe he is watching too much t.v. Another...after his teacher calls to leave us a message about his first 2nd grade "break-down" ..."why does my brain do that?"

I shared these Joey-isms with my students and they were cracking up...the next day at school they asked for more Joey stories. I think I am beginning to fall in love with my class.