Well the days have been busy and we have been under the radar lately. The holidays were fun and joyful but this week we learned Luke's tumor has grown. It is not a big growth but certainly any growth appreciable is not good. We were bummed, saddened and frustrated.
But truth is we live with this fear every day and have weathered this fear before. Luke is strong. Luke despite all his "issues" has always triumphed in the face of the worst. Therefore we will keep moving forward.
Again it certainly reminds us how precious every day is and certainly we are trying to make more efforts this week to just be together and moving forward where we might have laxed before.
So keep praying. Hug your kids a bit tighter. Be part of a solution not a problem and remember to seize the day. Oh ps: Luke is officially a teenager too! Turning 13 on December 10 th!!!
Love Nicole
Saturday, January 7, 2012 8:00 PM CST
Carpe Diem
Well the days have been busy and we have been under the radar lately. The holidays were fun and joyful but this week we learned Luke's tumor has grown. It is not a big growth but certainly any growth appreciable is not good. We were bummed, saddened and frustrated.
But truth is we live with this fear every day and have weathered this fear before. Luke is strong. Luke despite all his "issues" has always triumphed in the face of the worst. Therefore we will keep moving forward.
Again it certainly reminds us how precious every day is and certainly we are trying to make more efforts this week to just be together and moving forward where we might have laxed before.
So keep praying. Hug your kids a bit tighter. Be part of a solution not a problem and remember to seize the day.
Love Nicole
Monday, November 7, 2011 1:45 PM CST
So, here we are right at the beginning of November, right passed our first ridiculous snow fall, right at the cusp of the end of the first quarter of school...hard to believe some times how fast the days fly by.
Things here have finally calmed down from the business of work for August/September and the kids are really in a groove with school.
Luke loves middle school and has fantastic teachers which has made the transition seemless. Alexis and Isabella and Italia are also doing very well, although Italia is testing the waters currently to see how much she really has to behave...
Alexis broke her foot in September and it tabled most of her softball playing for the fall ball season. She is all healed and only has a minor limp yet she needs to work out with strengthening.
Isabella is starting cheerleading today and recently celebrated her 9th birthday. Did I mention how the days fly by...
I am anxiously awaiting Thanksgiving...my favorite holiday of the year. I love to cook, I love turkey, I love the house filled with friends and family and food and nothing else to distract.
I am however, not looking forward to more cold wintery weather but that is another story.
Luke is doing very well health wise. We are anxiously awaiting the next MRI which is 4 months away and for us seems like an eternity. This will be the first time in almost 10 years we have waited more than 3 months between scans...scary and exciting.
We are hopeful that he continues to stay well and healthy and grow and as we make some adjustments in medication for hormones, he begins the next stage into adulthood...yikes!
All and all John and I are very blessed and thankful for the super amazing equally annoying over the top don't fully know where they came from kids we are raising and the challenges and future surprises we know are around the corner. We are trying to make more time to slow down to enjoy the moments, for in the end, it is truly those moments that make life worth living.
Wednesday, August 17, 2011 6:15 AM CDT
The summer has flown by...again. August is busy as ever. School is just around the corner.
It has been a productive summer, but also one full of sadness. My buddy John, the Mayor of Camp Sunshine, lost his battle to his brain tumor on August 5. It has left me numb. I smile every time I think of him so I know that is a good thing...
Luke's MRI was a stable report and for this we are truly grateful. His focus now is on meds for his hormonal deficits as well as other low deficiencies within his body. We are focusing on weight loss but I am happy to report that he did not gain any weight all summer!!!
As usual, I am trying to find ways for us to escape our lives and spend time in things we want to do rather than have to do. Only time will tell where those adventures take us.
We hosted two exchange students from Jordan and Singapore this summer too and we are delighted to keep in contact with them. Very quickly they have become beloved parts of our family and we hope to see them soon!!! Thank you to them for embracing the kids and bringing some wonderful culture into our lives!!
As we gear up for school and the business it brings, I am reminding myself (and all of you) to take some time to slow down. In our fast paced world we take some of the things in life too seriously and too emotionally that we don't enjoy the still long enough. Read a book. Sit and chat with a friend. These are my favorites and ones I don't get enough time to do. Take the time, enjoy the moments...sometimes they are much shorter than you think.
Nicole
Friday, June 10, 2011 9:08 PM CDT
Sorry for the delay.
Luke's MRI showed some cystic changes and some bleeds of unknown origin in his tumor area but overall stable report.
I held off reporting until after our trip to Boston but due to President Obama's plans, that was delayed also so it looks like we are heading up there next week instead of last month.
Nonethless Luke finished school yesterday and things have been rather good.
His hormones are a bit scattered and that is not even the puberty stuff yet.
His cortisol function seems low too and his cholesterol is really high.
Despite our efforts, it does not seem to be helping.
Somewhat discouraged but we are trying to keep moving forward.
Otherwise, things are the normal craziness in our lives.
Looking forward to some downtime with the kids and some fun camps for them to attend this summer.
Stay tune for more! N
Wednesday, April 20, 2011 5:35 PM CDT
I recently read on a friend's caring bridge that she hasn't written in a while because it is the longest year ever and sometimes it is just too hard.
I feel the same.
I delay in writing is not sometimes because there is nothing going on but because there is too much going on to even write, and unfortunately, it is not all great super wonderful kid stuff. Some days it is bullsh*t and just plain sucks.
Another mom recently was in tears because after 3 years of dealing with her son's illness, she just doesn't see the light at the end of the tunnel. Maybe the last 9 years have scarred me but I honestly told her there is no light. There is no real end except for that end that we all fear and never want to happen.
The truth is after 9 years, it is harder. It is harder than it ever was to deal with. God Bless the medical stuff has been moving along. There is not much new, a bigger cyst here another growth there but nothing they can do to fix or even address. So we watch and wait.
The living part is harder. The day to day managing of the food, the stress, the therapies, the school work, did you get enough activity? did you shower? I am a micromanager of lives. And not just because I am a control freak but because if I don't manage it their lives will suffer. There really is no support for the "living with cancer" issues. I would like to think that our foundation helps with the fun stuff and certainly that has helped me personally a lot. But the day to day living with the disabilities and the need for modifications and then trying to get those in place and trying to pay for them or find the right school to provide them or the right outlet to get them from and the cost management and then the medications and the secondary issues are harder.
LEts not even talk about sibling stuff. Yes they are normal kids that fight but it is compounded by the fact they especially realize now that most of our world revolves around Luke. His eating dictates our habits. His therapies dictate our schedule. His doctor appointments dictate our days and his other needs dictate our home life. It is a real unchangeable can get quite annoying fact and my girls are getting annoyed some days at that realization.
I'm tired. Mentally tired. Mentally stuck in a rut. I want to access better services for Luke or maybe get him into a fancier school that can be more catering to him or challenge him or have more access to friends. I want to expose the girls to new adventures and to new experiences and build special memories. But even with the best efforts they seem unappreicated and unacknowledged. Maybe this is just the crap of parenthood. But be assured it is the crap of parenthood compounded by a brain tumor. Life with a brain tumor is not normal. Forget the books and the therapists that tell you they can help you...it is unchartered territory and we are ALL writing this novel on our own.
Good news though...we have each other. Truth is I look back occasionally over these 1200 plus pages of 9 years of confessing of the life of a brain tumor and say Good Job Nicole, you made it this far, keep going. I never could have prepared myself before hand for this journey. Never could have got the guide books and read the maps. But here we all are making roads.
Many of you know I love Ralph Emerson, Robert Frost, Shakespeare, among other poets. The road less traveled has become my new favorite for obvious reasons.
TWO roads diverged in a yellow wood, And sorry I could not travel both And be one traveler, long I stood And looked down one as far as I could To where it bent in the undergrowth;
Then took the other, as just as fair, And having perhaps the better claim, Because it was grassy and wanted wear; Though as for that the passing there Had worn them really about the same,
And both that morning equally lay In leaves no step had trodden black. Oh, I kept the first for another day! Yet knowing how way leads on to way, I doubted if I should ever come back.
I shall be telling this with a sigh Somewhere ages and ages hence: Two roads diverged in a wood, and I— I took the one less traveled by, And that has made all the difference.
Yes my friends, the road less traveled has been my path. It is sometimes a lonely one. The word has a habit of passing you by with its flash and glamor. Neighbors and friends continue on their own lives unsure how to address that girl who is rushing all the time and barely has time or interest to dress up. Our days pass into weeks into years and our focus seems only one dimension. But I have visited amazing place along the road. COnnected with great people and enjoyed lasting expereinces that have made me better than I would have been.
I regret that my life was not what I envisioned for it and sometimes I curse what it is because I feel unable to navigate it correctly. I hate the lonely path that somedays I feel and the yearing I have to enjoy that cup of coffee with a friend and laugh over the latest spring fashion. But one day hopefully not so far away, I hope to be sitting in my villa in Tuscany overlooking the olive gardens sipping my expresso laughing about how the days not so far back seemed endless and hopeless and how I journeyed on and together with those who understand me the best, we made it to the other side.
So to those who journey with me and who support me in so many ways, I thank you.
Keep LUke in your thoughts as his next MRI approaches. I know I am so hard on him but he is capable of so much and has accomplished so much I truly am very proud of him. Despite his "issues", he carries on. Pray for peace and joy for him all the time because the burden he carries is heavy and sometimes it overwhelms him terribly. Keep the girls in your thoughts too so they keep trudging forward in a life that is so different yet so rewarding hopefully at the end.
And today, the sun shines beautifully...
Nicole
Tuesday, February 1, 2011 6:56 AM CST
Life moves pretty fast these days. If you don't stop to smell the roses, it may just pass you by.
Luke did his MRI on Friday completely WITHOUT anesthesia. After last MRI's breathing issues and craziness I was so psyched to have him do this. Getting through the first one is of course the hardest!
WE made a lot of promises and even bought PEZ in the waiting room, but at the end he did it! I was so thrilled I could have burst.
Luke was weak and not feeling good after being NPO for 18 hours but once he got some crackers in his belly he was better.
He really did it without any music or video too. He had to have orbit cuts so no video and the music ran out after 1/2 hour and no one restarted it.
We celebrated with dinner, PEZ shoppping and ice cream at Maggie Moos. Best part was the preliminary from his doctor that the tumor was stable. Slight trauma bleed inside a cyst is alittle worrisome (nothing is ever just stable) but we feel elated nonetheless. I was starting to convince myself something was not right because his behavior has been eratic...I guess it is just the teenage years starting.
So another dropping of snow has blanketed the area. We are excited to escape shortly to warmer weather and hopefully come back to new weather!
Kids are off from school and I am out to shovel...again, but I thank you all for your continued prayers and love. We feel it every day and are truly blessed.
N
Thursday, January 6, 2011 3:52 PM CST
Happy New Year to everyone.
It is hard to believe another year has passed already. Luke is now 12 years old. Another hard to beleive moment. He is busy texting and emailing and making plans. He is busy eating and complaining about vegetables and really keeping us on our toes.
But I am lucky right now. He is feeling well; things are going well and despite my own frustrations with the way time flies, he seems to quite enjoy the current pace of life.
But my heart aches right now for the many who are struggling and who have received bad news of growth or news no parent wants to hear, but that the doctors have done all they can. My heart aches like it has not ached in a long time. I am not sure how to make something that is totally unacceptable palatable even for a moment.
A good friend of mine caught on to my dismal mood and very much helped me re-focus. Thanks Shel! The toughest part of the journey is the length of the journey. Even today as I met newly diagnosed families, and I tried to be a tiny bit of support and hope for them, it reminds me once again of how unfair this journey can be. It takes lives and throws them in a blender and you never know quite when the shaking will stop.
Sometimes the dust settles and you re-group and trudge forward and again, I cannot complain as of late we have been trudging well. But for those in tough spots right now, I wish I could do more. I want to do more, but haven't quite figured out what that looks like. So I will pray for you. Pray for wisdom, for strength, for peace. PRay for miracles and for understanding and hope.
Mary Anne Radmacher: Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.”
So my friends, I will continue to do whatever I can tomorrow to hopefully help your tomorrow too. Together, we are very powerful.
Thursday, December 2, 2010 2:02 PM CST
Well, I am close to my once a month journal entries. Time flies with a crazy life and 4 kids and one dog and my work-a-holic husband.
We have had some joyous few weeks and some crazy ones. School is getting a little more challenging for Luke and I think we all have to admit when it is too much. Some days that is just as hard for me as it is for Luke. Amazingly he is a hard worker and really tries very hard.
The kids all had very good report cards and I was so proud of them. They, surprisingly were a little disappointed in their grades, hoping for higher ones. Guess that is good incentive to continue to work hard.
Halloween was an adventure for all with the cold weather and November brought us to the Crayola Factory, Griffin Madness, Central Catholic Vikings and other fun adventures.
Thanksgiving was spent in Copenhagen Denmark which was an adventure to say the least. The snow every day and sub-freezing temperatures did not take away our sense of adventure and we covered upwards of 7 miles a day exploring a city LUke said is not much different than Allentown. Go Figure.
Luke's birthday is right around the corner and I am happy to say that he is growing beautifully. His eye pain is still there but less bothersome and his headaches have subsided. We are trying to reduce his stressors and anxiety triggers which seem to help keep his headaches at bay.
He has been working with a behavioral therapist to help him remember to take care of himself and those he comes in contact with.
The days are long but go by very quickly. I remember 12 years ago in anticipation of a little boy not so anxious to make his way into the world. THe perfect pregnancy. The Queen Rockumentary on TV for the delivery. The amazing milestones he hit very early. I am so proud of the journey Luke has traveled, the triumphs he has made despite the unthinkable and the prospective future he awaits. One day at a time for all of us.
Keep those who suffer right now in your thoughts and prayes and thanks for checking in on us. We hope to report more exciting adventures soon!!
Nicole
Monday, October 25, 2010 2:01 PM CDT
It has been a rough couple of days; weeks maybe!
So Luke's MRI on Friday was eventful as usual. First they scheduled it for 12 noon which for a kid that loves to eat and has to be NPO before hand was tough. He was nauseated on the way down because he was starving...
We arrived ontime and were taken back on time but those MRI frequent fliers as many of you are realize that they always want you there 1 1/2 - 2 hours early to take your blood pressure. SO we waited.
They took LUke in around 11:50 to get him set up. We reviewed his chart and I made sure to mention (again) his adhesive allergy and Tegaderm allergy. A few seconds later I see the anesthesiologist taking out Tegaderm. I said, you aren't really going to use Tegaderm after I just reminded you of Luke's allergy are you?? OOPS....
I left and grabbed some soup as I too was starving and took up my post in the waiting room. 1 hour passed. No word. almost 1 1/2 hours later the anesthesiologist appears and tells me it is over, he is in recovery and they should be out to get me soon. And, Oh by the way we had to put a LMA breathing tube in, and we really should have his tonsils removed. Yeh, we have heard that before but only from anesthesiologists...no one else wants them out and LUke has no other problems. Another story.
Then I hear a piercing scream and yelling...LUKE. Evidently as they removed the LMA and tried to get him to breath on his own, he awoke too much and went into a spasm panic yelling and screaming. they had to give him more meds to put him back to sleep. Evidently he stopped breathing during the MRI, they had to do an emergency head tilt and then stick a tube in.
When I got bedside he was shiverring with 3 blankets on oxygen. He had bruises on his neck from the head tilt. He slept for a while, tossing a little and crying in his sleep. When he finally awoke he was crying, in pain and had an intense headache. He was a little disoriented and his arm hurt (2 bad IV pricks) and his foot where the IV was currently.
The doctor called me to report that there had been some progression on his tumor, a small area in the front that is only pea shaped had grown. However nothing on the MRI including this area gives them any reason for his eye pain. Also, despite the doctors pro-treatment approach, he doesn't feel we should do anything with this growth at this point other than watch it.
We finally got him drinking (his throat really hurt) and I got some Tylenol (head really hurt) and we were off home. He fell alseep almost instantaneously which was a blessing. Traffic was a parking lot at 3:30 pm of course but as I made my way home I was thankful he was well and sleeping.
Up the turnpike on my way home, the road becomes a parking lot. Turns out the upper part of the turnpike was closed due to an accident. It takes us 4 murderous hours to get home during which we pull over for a bathroom break once, fresh air because Luke is in pain and sick, and once to vomit.
AHHHH....fortunately aside from neck pain from the head tilt, Luke is feeling much better after that crazy ordeal. I myself have aged another 10 years.
Thanks to my sister Suzette the kids had someone to pick them up and get them off the bus and feed them dinner.
It has been a crazy few days and we really know more bad than good now, but our focus is to identify some cause for the eye pain.
Girls are well; we are appreciative of everyone's good thoughts and positive energies coming our way!!
Tuesday, October 19, 2010 5:20 AM CDT
Thank you to everyone who has been sending us notes and comments and suggestions. It is amazing how big our information resource really is and we appreciate it!
That being said, Luke's eye is still a quandry. He has pain with movement only but the pain gets more some days and causes headaches.
We have an MRI Friday and the wait is harder for Luke than me I think because at his age there becomes so anxiousness in the unknown.
Luckily, he is feeling well otherwise.
Luke attended Pezsylvania on Saturday after a long weekend at Camp Sunshine. I don't know in his world if a week gets much better than that!! He came home again with a large load of PEZ, almost disaapointed that he did not get more. Go figure!
We ended up in the ER for Italia on Thursday after a concussion from a fall off a chair. I think lately I am feeling about 10 -12 years older. YIKES this parenting thing!
I did have a nice weekend myself. Celebrating Isabella' birthday with her friends Friday at Olive Garden, attending a wine trail with someother moms and then some super buddies in NYC attending a murder mystery at the Metropolitan Museum of Art.
Luke and I participated in a 5K on Sunday and then I tried one of those wonderful bottles of wine I picked up Thursday mulled with spices. YUMMO.
Needless to say I am catching up on sleep because I am really still tired but it all helped change my focus and just enjoy the moments.
So, my ramble of craziness is coming to an end. I will keep you all posted after Friday's MRI. Thanks again to everyone's suggestion, and to Bob for hooking me up with Dr. Vejay. I don't know if he was helpful or not but the fact that he took the time to call and chat was awesome.
Stay tuned. Pray for all those in need, especially our little buddy John and our friend Derek and Tara.
N
Tuesday, September 28, 2010 2:32 PM CDT
Long time since I wrote but things are really busy. Luke's weight is up since his June visit and well, that is really bad.
Luke and I have been moving through the last few weeks with a love hate. He hates that I dictate every part of his life...so do I. He hates that I have to watch everything he eats and make him do more exercise...so do I. He hates that he is not like everyone else and cannot behave the same...so do I and he hates that life is unfair...so do I. But I love him and he loves me so in the end...it is a work in progress.
Luke still has some difficulty in our new routine but he is really doing amazing at it. Not only have we all cut back our caloric intake (did I mention I am hungry?), but we have increased his activity. Thank you to everyone who has been helping us explore new ways or offering their time to do workouts or walks with Luke. It makes it one less thing I have to make him do and he loves the interaction.
Many of you know that hypothalamic obesity is a result of the damage to the hypothalamus. It is not reversible. There is no cure. You cannot fix it. Sounds like the damn tumor itself but it can be almost worst, at least right now.
Luke's body is not processing his food the same as everyone else and so even though he eats well, his body is still storing everythng as fat. The best we can hope for, and we have done this before so I am hopeful, is to work harder than the obesity and keep it at bay long enough for his body to keep growing up ward and fill in his width.
Unfortunately with this issue comes even more consequences. HIs cholesterol is up, his liver function is abnormal, and the list goes on and on. So more doctor appointments, more meds/vitamins/voodoo (haha only kidding about that part) to try to help. In NOvember we are off to a lipid clinic to see how to help the liver and cholesterol. Someone cut this kid a break please...
Anyway, Luke has completed yet another 5K with Mrs. Glover a few weeks back and he and I are registered for a 5k in 2 weeks together. PCFLVs 8k run/5k walk is March 19, 2011 so that is at least another one he can do...and there are billions more I am sure if I look.
I cannot lie, I am tired. This is a lot going on with his health that is complicated by the behavioral therapist we have engaged to help with that part. Luke is doing well but he has anxiety and stress and without a good social network of friends, he is an OCD worrier. So hopefully we can help change those things too...get him more social interaction, and help him learn coping mechanisms. Meanwhile, the girls and I are learning how to fix what we can with Luke and manage what we cannot. It is a learning process for all of us to all take a deep breath and live our lives a little differently.
This Holland place is awesome, but exhausting. When does the plane for Italy leave again...???
Italia is loving preschool and her BFF Jacob. Alexis and Isabella are busy at school and Isabella is busy not listening but I guess that is par for the course.
Recently a good friend was telling me what a great mom her sister is, how she was just born to be a mom and has patience and all those grand qualities that are really helpful when you are mothering. Made me realize that there are those who just do and then those like me, that struggle all the way to the finish line. Luckily though, I will finish!!
Tuesday, August 10, 2010 5:26 PM CDT
Long time no write. Life keeps moving along. I find myself quite reflective these days. Both in terms of the past, the present and the future.
May and June were tough for us...very tough. Luke had a hard time end of school. fortunately, the summer has been good to him and I am hoping that 6th grade, is better.
We have escaped a few times this summer and built some more memories. I lost my camera so I am missing the actual physical reminders of those moments, but each one is part of our tapestry.
I continue to meet new families all around me and I find such amazing stories of love, loss, strength, courage in the face of sometimes unimaginable adversity. We stand in a special place sometimes. Many days it feels that we stand there alone but I am blessed to know deep in my soul how really truly connected we all are. I know too my kids find that same connection with others as well and I can only hope that one day Luke feels the peace that is part of that circle.
So we press on for our last month of summer before the necessity of school pulls us back in to homework and tests and projects and hopefully not quite as many breakdowns. My kids are growing every day and each day I remind myself how awesome these days are. Many days those slip by because the arguing overshadows the other part. But for tonight, we are off to the talent show where Italia hopes to sing and dance to California Gurls. Katy Perry Look Out!
N
Tuesday, June 8, 2010 1:53 PM CDT
So I guess Luke is starved for attention via email! LOL
Things here have been crazy as usual. School ends this week, Alexis has 3 more softball games and I am looking forward to us all taking a deep breath.
we have some things planned for the summer and it looks like the weather has us off to a great start. We have been working on some home improvement projects...those never end...and we will clean out the closets and all the paperwork shortly.
Big news is the wedding in 10 days of the kids' nephew Todd and Amanda. The girls are all 3 flower girls and my how beautiful they look!
We will be posting pictures for sure.
Alexis just returned from Camp Can Do an overnight camp for siblings of kids with cancer. She met a BFF and had a smashing good time staying up late, eating sugar and being a kid. LOVE IT!
Today I actually felt like I made some progress in my never ending pile of things to do...so before I hit another pile, I wanted to let you all know we are doing well.
Luke is workign hard and it shows We are very proud of his accomplishments this year and his recent efforts on better behavior!
Friday, May 14, 2010 3:28 PM CDT
Wow...tomorrow is 8 year survivorship. Seems like yesterday our lives turned upside down and then other days it seems like a million years ago and we are really tired.
Luke's MRI results came back stable but we are awaiting our trip to Boston for their final read as well. Of course we are ecstatic but with the good also comes the bad. Luke's tumor is cooperating in not growing, but the tumor effects have not been as kind this week.
We have been dealing with Luke's ups and downs for a while and recently they have hit an all time low and have been causing horrific ripples in our family and at school. Just when I thought all hope was gone, Luke this week has been really good.
So, we are still moving forward to see what other help may be accessible to him for his related issues but are thankful the storm for the moment has passed and we are enjoying the calm that is currently before us.
The girls are doing well and once I catch my breath I think I can report I am well too.
With the spring warmth comes a chance to refresh and renew and each year on Luke's anniversary I try to remind ourselves of how lucky we are to still be here where we are fighting. Granted the fight has taken its toll and there are always casualties. I humorously say our entire family is really screwed up but I am only half kidding. Each one of us has our own baggage from this disease and some of us have to work hard to trudge on.
Yes our lives are different than everyone elses and sure I wish a magic fairy would come down and rescue us with her organizational skills, her healthy nutritious meals we all love and her easy way to exercise and see immediate effects but she has not yet shown up so we trudge on.
But all is not lost. Alexis despite being hit the most and the hardest by all our 8 years of turmoil is for the most part a happy prepubecent moody almost 10 year old. She laughs, giggles, loves her friends, hates her friends, makes her bed, doesn't make her bed, sings, reads, ....you get the picture. But each day part of me realizes that we still don't have enough time in our day to remind her enough of how much we appreciate all that she has sacrificed to keep everything moving forward. I can only hope that deep down she knows that we are so proud of her for the years and years that she tramped to all the appointments not knowing any different. And today where she is willing to lend a hand to another cancer family or a small child who needs her older sister TLC.
Isabella is crazy as ever and her life was started in utero in cancer world. SHe has known no different and only until this year really understands that her brother has a brain tumor and is different. The sacrifices she has made unknowingly we know will be replaced by those she willingly and knowingly has to make to no fault of her own and Italia...she asked if she had cancer the other day because she lives in the world and work of cancer that we do. I hope that is a positive. But, like the color of our skin she knows no difference in that word and only knows the positive that we can do to make a difference.
Today we mailed out 7 birthday presents to our cancer friends locally. Some on time, some early and of course, some late. But we want them to know, like my own brood, that they matter. That each one of us is connected through experience or life and maybe through divine intervention to give a little of ourselves, to take a little what we need and to all help each other along the way.
At the end of the day, these are the lessons I hope we all can take away.
So Luke was diagnosed during brain tumor awareness month...although I did not have a clue what that was in 2002. Now, we embrace tomorrow as fighters, warriors, educators, shoulders to lean on, friends.
Kisses to all for helping us through the last 8 and hopefully the next 80!!
Nicole
Friday, April 23, 2010 7:10 PM CDT
So today was Luke's latest MRI; no results yet. We head to Boston next week and back to Philly for results. I am confident and hopeful, as always.
Otherwise, things have just been quite busy lately. Lots of school work, softball, swimming and therapies to fill every minute of the day. Loads of laundry and household chores starting to back up...
but, we hope to catch our breathes soon.
Luke is doing well; he certainly has better days than others and the weight/food/exercise is still a daily harsh battle.
The girls are doing well; Isabella has her First Holy Communion Saturday and she is very excited. We has matured a lot this year and we are excited for that as well.
Alexis moved from cheering to softball and has still a very busy schedule. My days all seem to roll into one without enough time to get all I want and need to get done usually.
But, we keep moving forward. Spring is an exciting time full of new life and new promise.
Keep precious Coco in your prayers ...she is fighting really hard and doing a great job. Also prayers for another little girl Sherilynn and all the amazing kids we are honored and priveledge to know ....
Good night! I am pooped!
Wednesday, March 3, 2010 2:41 PM CST
So wow, how time flies. WE have been busy bees with the annual trip to Disney, my birthday (well that was nothing special) and Luke's first ski experience.
Now we are half way through March and I realized I never posted an update (actually Luke reminded me!!)
So Disney was awesome as usual. However, we drove down in the snow storm and returned home in the "it never snows down south" snow storm. So my driving skills were put to the test and all the 150 accidents we passed reinforced that YES, I can drive!
Spent some time with the lovely FINE family in Georgia who were so gracious with their hospitality. We love them so much!! We went roller skating too...what an adventure!
The weather in Florida was a bit colder than we are accustomed too even at this time of year, high 60s, but we managed! We certainly did better than all those in the north digging out.
Italia really enjoyed DIsney the most this year. She had a sparkle in her eye at every turn and loved the characters and the princesses and what is next. Luke sprained his leg the day before we left so although he had a leg brace, and walked most of the time, he did end up in a wheel chair the last day which saved our ears a lot of complaining.
WE hit Typhoon Lagoon this year too and everyone enjoyed that as well. Luke was a bit of a fart here, when it started a light drizzle he was ready to pack up. We were not leaving though so he and pappy sat under a tree. Alexis, Aunt Pam and I hit the Gushers over and over and over. WE certainly got out work out climbing the 3 flights of stairs and then howling all the way down. The park was not crowded so we were certainly entertaining the life guards. Italia loved the kids area at Typhoon and did not want to leave!
My dad celebrated his birthday in Disney but we did not hit the Kitchen Sink Ice Cream Dessert which is our usual specialty. We all missed it though!
Luke did finally give in and head into the hot tub to soak his ankle which eventually turned into soaking his whole body. Luke in a hot tub...you heard it. I was shocked but like most everything I tell him is good for him, in the end he realized i was right!!
So, till next year... Disney awaits.
Luke headed to the ski slopes with his awesome therapist last Monday. I couldn't believe my eyes, my little man was a pro. He did better than I ever did, without poles, just using his body and his arms to glide down the slope. He gave up snowplowing and was parallel skiing immediately.
It did, however, exhaust him!! He was a hungry crabby patty when he was done~!
Now Alexis wants to go...did you know that skiing is expensive though.
so off to more adventures. Luke is in PT now to shape up his ankle from that sprain which has recovered nicely. My knee is still a little beast but I am better overall too. If I can, I am going to borrow his PT guy to help me too!!
Until later...we are, off!
Tuesday, January 19, 2010 5:11 PM CST
Wow ... with the good news I almost forgot to post I was too dumbstruck!
Luke's recent MRI showed no progression of solid tumor with slight increase of some and decrease of others in the cystic component.
We are calling that stable and for the first time EVER the doctor recommended 6 months between scans. Uh...yikes, I am not ready for that. So I opted for 4 months. These things take easing in after all!!
Otherwise things are moving a long. This week is midterms so everyone is crazy and despite going to bed early lately I am still really tired. Not enough hours in the day and quiet time to finish my endless to do list.
Leaving for Florida soon and hopefully WARM weather.
My birthday is right around the corner, but heh, no sweat.
And as for the knee, the medial ligament is on the mend and feeling pretty good these days. Especially after I found the $550 brace for $40!
Best to you all N
Wednesday, December 30, 2009 6:24 AM CST
So things have been busy lately with the holidays and the foundations activities but all is magical of the season.
We recently finished the Ronco's 12 Days of Christmas, my version of our year in review, and we invite you to check it out... http://www.mypublisher.com/?e=SV6kgzMEAese7tlpv_Yjl4SYhphJAa_XN9WAo8xowG37DOxpMpulzA==&_mp=E1Mn4dKFF eSPPa5V0FA Ay5P 036mi &showform=1
Cut and paste that address into your browser and enjoy.
Luke and the girls have been doing well. Santa is becoming less of an influence in their behavior but magically despite my prediction of nothing under the tree, the goods under the tree seemed to have made them better behaved suddenly. Or maybe they are just distracted.
Interestingly enough however on my recent trip up north to visit the lovely Lanosa-Bard family, I realized some important factors about life in general and the plans we have for our children. I have friends who have kids going off to college and they are prestigious places...Villanova, Dartmouth, etc. Some days I am not sure my kids will get anywhere as my days are spent yelling and just trying to keep up with their messes let alone "grooming" them for something better.
But then, it hit me...my kids 1. love the Sound of Music and know all the words 2. understand football and scream at the TV appropriately 3. can play gin rummy and other related card games 4. think being drunk and doing drugs is just plain stupid 5. think it is super cool to have a Wizard of Oz party and dress up like the characters 6. still are not embarassed to be seen with mom and dad 7. can operate a computer better than me 8. know the words to and enjoy most Nickelback songs, Daughtry songs, FloRida songs, and really do not listen to much not playing on the local radio station (whether that is good or bad!)
so I guess...the plan is in motion whether I like it or not. In fact, they have all but decided their futures anyway. Luke is going to be a graphic top designer at PEZ (shocking huh) and Alexis is going to be a fashion designer in Manhattan. Isabella will live in Connecticut near Luke and be a veterinarian in her own practice. Italia is going to split her time between Manchester England and Boston where she is a top female pediatric neuro-oncologist along with her husband, Simon. SHe has 2 dogs Milo & Otis who spend their down time at Isabella's farm with her animals.
As for me...John and I are going to start to develop some activities we can do together that dont involve running kids around and dropping and picking up. We may even finish those golf lessons we started 12 years ago. And perhaps, we will enjoy some new activities also centered around our children's lives ...a Wizard of Oz party at the farm in Connecticut or a good spa day at Italia's house in Manchester. Either way...I guess the year has been a good one and 2010...with the MRI 1/12/10...here we come.
Thursday, December 10, 2009 4:25 PM CST
Today my little man is 11...
Almost NOT a little man anymore.
Will report more later...today we are busy as always and heading shortly to their Christmas Concert at school.
Keep the birthday wishes coming though...Luke is digging it!!!
Best Nicole
Tuesday, November 10, 2009 3:22 PM CST
So ... it seems this year Luke is busy checking off his bucket list. His next adventure involved DAUGHTRY...yes folks, Chris Daughtry, and his great band in concert, live, at the Sovereign Center. But that is only part of the story.
It all starts with a girl, actually 2 girls, named Mara and Jen who helped create a worldwind fabulous day for
The day began at breakfast with 4 clue cards A tree A doll the sound a letter K makes the sound a snake makes
Put it together --K-HISS DOLL-TREE Chris Daughtry They figured it out in 32 minutes -- actually Alexis figured it out.
Luke screamed.
Then they went to school I picked them up at 1pm at 2:15pm a huge HUMMER LIMO arrived to escort us on our adventure We drove with Steve eating junk, drinking and laughing hilariously
We arrived around 4pm in Reading We went in and got to see Daughtry practice and then off with the other VIPs to the photo session. Strict rules ...no autographs, no photos
But Jen was not having it...she was whispering in Josh Steeley's ear that Luke needed an autograph and so, we not only had pictures taken, spent extra time with the band but left with autographs in hand...
Did I mention Jen rocks??? We made a stop at the merchandise tent for t-shirts and sweatshirts and then...
Then off to a swank dinner at an awesome restaurant --ITalian of course --- with pasta and meatballs the size of Luke's head. Garlic bread to die for and yummy seafood.
Out the door again, back to Sovereign Center where we had 2nd row, center seats and stage left passes to be in the "mosh" pit section which was not mosh at all.
So we (although stampeeding over those on either end) navigated between our 2 seat options we listed to CAVO (1st opening act) and then THEORY OF A DEADMAN (2nd opening act) and then DAUGHTRY.
Italia fell asleep during THeory of Deadman ...how is that possible you ask? I have no idea...
Isabella fell asleep 1/2 way through Daughtry while he was singing 2 feet away from us...but at the end they were all ready to celebrate back into the limo.
Quite ride with 3 sleeping kids back home for presents and more celebration.
UNBELIEVABLE!
The pictures do not do anything justice but I hope you enjoy!!
Luke JAMMIN!!! We are finally recovered but cannot believe it...
831 Live Life in the FRONT ROW!!
Sunday, November 1, 2009 7:29 PM CST
I just had Luke's 11th birthday pictures taken (a month early to avoid the crazy germs in December) and I cannot believe my eyes.
My baby boy is growing up...he is practically a man. What a journey. These pictures for some reason have really struck me hard. I am so proud of Luke. So proud of his journey. SO proud of his accomplishments.
Tonight he played Gin Rummy with my dad and Alexis and it was sweet.
Enjoy the photos.
N
Saturday, October 17, 2009 5:16 PM CDT
So Luke had one of his bucket list items checked off last weekend as we headed to the Eagle's Linc Center to see his "boys" take on Tampa Bay. Well, thanks to Katie the Amazing and Teva Pharmaceuticals, we not only got to go to the game, we got to go on the field at 11:30 - 12:45 to watch practice and then, as they cleared the field, blew up the tunnel to introduce the team, we got to line up at the tunnel before the cheerleaders and watch the team run onto the field.
Luke was in heaven. As if it couldn't get any better, he got a RONCO jersey and the Eagles WON the game! Awesome time. Special Family Memories.
So enjoy the pictures ... they are killer!
Otherwise Luke continues his Velocity workouts and it is going great. Although his weight does not seem to be changing, I know he is feeling better, his stamina is improving, and I think he is healthier. School continues to keep Luke busy as do his sisters. So, we continue to move forward and are blessed by the recent good news, Luke's continued efforts and the girls support for all we do.
Best Nicole
Thursday, October 1, 2009 3:29 PM CDT
Today our marathon of appointments paid off with those beautiful words ... STABLE...
Now of course, there is really no such thing as stable but ...a few cysts grew, a few shrunk...it is status quo.
Luke's weight was up since July to which my response was that he is kicking butt in this new class he does 1 hour 3x per week and even if the weight doesn't correct, he is HEALTHIER
He also grew...a little...but grew none the less.
His blood work looked better...his cholesterol and triglycerides are still up but maybe I can blame it on bad family history. In the meantime if that excuse doesn't work...the nutritionist agreed that the exercise should.
And speaking of the nutritionist, she praised Luke for his diet because although lean on veges and fruits, it is very good for a 10 year old. She thought it was awesome that he loves milk and loves skim at that and drinks a lot of it!
Her recommendations were to increase fiber to compensate for what is not naturally happening with his intake (i.e. limited fruits and veges) and to continue the exercise and increase water intake.
Lastly vision was again 20/20 - 2 which is awesome. We always hate when Dr. Liu quantifies by saying I don't know how someone with Luke's tumor still has vision...but he looks great. As if ...whatever.
So a long day ends on a good note. Still work to be done, but luckily lots of time to keep working.
Our next tests are in December and between now and then we hvae also been asked to participate in a study about optic tumors to help them hopefully learn more about how vision is lost etc. Of course, like all current research, it offers little promises for Luke but for those to follow...there may be hope.
Tonight is PCFLV's Sweet & Sassy Mom & Me Spa Day...thanks again to MITA for helping to arrange this amazing opportunity for families...she is such a giving soul...
More to come later...until then, thanks for the prayers.
Nicole
Friday, September 25, 2009 5:38 PM CDT
Today was painful...we left the house around 5:30 am to head to Philly for Luke's MRI/MRA
We arrived right on time and of course...there was delays. The patient before us was having trouble and it delayed everything one hour. Then, we had an add-on which went before us so we were again delayed.
Those of you who know Luke well, realize that one quality Luke is lacking is PATIENCE.
He was crawling out of his skin, miserable, complaining...I was ready to walk out and leave him there. You would think after ALL this time...he would be use this stuff.
The good news was once we got in there we also had them draw his blood so it saves him from fasting next week for the draws. His MRI/MRA went well (I haven't peeked at it yet but I am optimistic). He slept about 1 hour after which is long for Luke and he slept the whole ride home...which was good too because he was (1) unaware that we were moving only 5 mph most of the trip and (2) he woke up in a MUCH better mood.
Tonight he ate well and really enjoyed his dinner...a sure sign he was truly hungry!
We will meet with endocrine, nutrition, ophthalmology, and oncology next week and hopefully have good news to report.
Until then...thanks for the prayers and well wishes. We hope to get some work done this weekend to keep him up with this school work and then relax and enjoy the fall!
Best Nicole
Friday, September 4, 2009 5:36 AM CDT
So I had a great entry...Isabella deleted it. Doesn't she realize how little time I have to sneak these in and how important they are...
Kids are back in school. ALexis is 9. Italia is 3. yikes where to begin.
Alexis turned 9 and she is doing great. The big "P" word has started to come into our lives and John is so funny...never wanting to hear about armpit hair at all. Then to boot, I am reading the girls Are You There God It is Me Margaret...which they love. We are at the chapter where everyone is getting their period but Margaret. Again...John is hiding and cringing. With 3 girls...he best get with the P (puberty) or he is going to be in for an awakening.
Meanwhile, we continue to keep Luke's P word supressed. Hmm... at this rate, I wonder who will go first.
Italia turned 3 and she is a firecracker. She talks SO MUCh some days you just want silence...actually that is a lot of days. She is heading to preschool next week and she is so excited. I am sure the first day will still be tough but she cannot wait to be like her brother and sister.
Isabella will be 7 next month; she lost her 2 front teeth and looks silly. We still have not got her to ride a bike independently...but hopefully soon. Meanwhile, she is looking forward to spending more time with her friends in school.
As for Luke, he had an amazing summer and is still organizing PEZ. The first day of school he was so excited and then he came home and said he hated 5th grade. Well, you see his teacher gave him homework (a simple learn about you paper) and he just did not understand why he gets homework and no one else does. It seems to be a new theme here...he doesn't want to be the oldest because it comes with responsibilities...which he doesn't want.
Now after 4 days he seems more in a grove. But, he definitely does not like the realization that he will have more to do and Alexis may not. At home his "chore" list has 9 items and Alexis' list has 8 items. This simple discrepancy will bring the boy to tears...and lots of them. So those days are not good ones for me.
And oh yes by the way... he needs a personal chef too. You see he hates everything I make because it has a vegetable with it and he is tired of chicken and pork. Go figure... So any free personal chefs out there feel free to reply for a job...you will be working for loud obnoxious employer who is very demanding and will probably tell you quite often how to do your job. Nothing you make will be good unless it is really bad for you and includes lots of dessert.
We also all just returned from the Meeting of the Round Table at the Magical Moon in Marshfield. Again...another smashing good time. We drove through horrific traffic Thursday night, enjoyed a beautiful day Friday with lots of festivities Friday night and then camped in a tent till saturday. Well I think I have only camped in a tent once in college and it wasn't my tent. It seemed fine...I did not wake up in water (of course it was not raining), so I guess my anticipation was an equally uneventful evening. Well it took us a while to figure out how to put the tent up...thank goodness for directions. Then when the rain came...and I mean came...it started also coming in the side of the tent. Hmm...I guess I can deal. The kids are ok. Then it started to come in from the top...so at 12:30 in the am I raced in the rain to get the car and proceeded to load all our stuff and kids into the minivan. Where then we proceed to sleep...John across the front 2 seats, the kids in their seats and me trying to fit my body down the middle and around the corner. Too funny. Well it certainly made for an interesting anniversary celebration too...Happy Anniversary John!
Luke is feeling good and despite a few headaches, we are not anticipating much the end of the month MRI. His blood work should be back next week and that is of more interest right now. Still trying to keep him moving...which is getting tougher.
In the meantime, we are looking forward to next week's Color My World Gala and to spreading more awareness about childhood cancer throughout the month of September. We are trying to "blanket" the Valley with awareness posters...so if you want to help hand them out to local businesses, let me know.
Together, change can be realized.
Until then...the Roncos keep riding the wave.
Tuesday, August 11, 2009 1:30 PM CDT
So things are moving along normally.
Luke is "working out" on the WII Fit, but gained 0.7 pounds...go figure.
Truthfully, they are all ready for school to start. Italia asks every day and I think it will be the best thing for them...and me.
I often wonder if the sacrifices I have made to be here to get them to school and when the get home and to choose jobs that have afforded me a flexible schedule have all been worth it. Some days they are trying to re-enter my uterus and other days, they wish I fell off the earth.
But truth be told I think that they have just grown so use to me that they don't realize that without me ...it would be like functioning without your arm...doable but not preferred.
In the meantime, we still argue over not showering and bad hygiene. At what age do I have to stop reminding them to change their underwear?
Today the dog got smacked by a bird pooping...Isabella spilled milk ...Italia dumped cereal...
I did however, get out home office straightened out so hopefully I will be organized too.
We are busy gearing up for our 2009 Color My World Gala for pediatric cancer awareness on 9/10/09.
Learn more visit www.PCFLV.org and go to Color My World Gala.
Until then, we are off to enjoy the sun or rain...depending on the day!
Wednesday, July 22, 2009 7:44 AM CDT
Luke and his sisters with the Gliha's of PEZAMANIA...they are so amazing and were so great to all of us!! *********************
We have been quite busy so I hope to catch everyone up a bit.
We headed to PEZAMANIA 19 the largest oldest run pez convention in the country and it was nothing short of amazing. It was amazing to me to see so many PEZHEADS together and all of them, well most of them, adults. Luke was one of the few youngsters and his collection albeit large is still young by these standards. Most of hte collectors have the "old" pez dispensers which Luke hopes to eventually add a little bit at a time. Actually he hopes to add them all at once but I have convinced him a little at a time.
In the first hour he had added 100 pez to his collection and by the time we left, with purchases, swaps, bingo prizes etc I am convinced we have 200 new pez coming home with us. Plus stuffed PEZ and a large PEZ pillow.
The Gilha's who run PEZAMANIA are amazing and they embraced Luke in such an amazing way and made sure everyone treated him extra special and made his trip amazing. I cannot thank them enough. You may recall that they were part of the Birthday Bash in December that Gwynedd hosted for Luke and learned of Luke when Laura Bontempo went on her quest for PEZ.
They are also friends of his new friends at PEZSYLVANIA and so the PEZ world I guess is really not as large as you think... The girls were super...it was hard to live in Luke's PEZ shadow and luckily Aunt Pam had them at the pool. They were also good bingo players so Isabella took home one loot from one of the games...Luke is trying to barter it out of her hands as we speak.
Then we drove 13 hours to Maine where we currently are enjoying the fickle weather of Maine. Maybe it is the fickle weather of the country right now because I cannot remember a July this cool.
But they are all having fun and enjoying themselves. I live in a constant state of chaos which I keep trying to embrace. My goal for myself is to RELAX. And not in the mainucure/pedicure sense although I would love that but to mentally relax and let go of a little of my control in the world.
The only flaw with my plan is that my kids are just up each others butts so far that they cannot see the light that is brother and sisters. It is a shame but I guess it is a norm. I hope that one day they realize that at the end of the day, each other is who they have ... until then my quest continues.
We hope to head to the Magical Moon this weekend for another meeting of the round table of the knights. Luke is so excited. But the weather does not seem to be cooperating so we may be postponing the meeting and the castle ceremony.
I cannot wait to see the Moon farm because it is so amazing and Donna has done such a great job. she is the best!!
More later...Italia is running away.
Wednesday, July 8, 2009 7:41 AM CDT
MRI was STABLE that is the great news.
We are in Maine and the kids are having a great time. The rain has set in however, but they are still loving camp.
John and I have found time to enjoy the offerings as well and were on the lake yesterday in the kayaks before the rain set in.
My brother is getting married on saturday and that is exciting and we are looking to celebrating the beginning of his life with Tara and our family on that day.
More pictures and news to come...back to fun in the north!
N
Friday, June 26, 2009 12:38 AM CDT
Today is the MRI and it is a little later than usual and we are still not done. Our appointment was later due to younger kids this morning, plus Luke did make another attempt to do it awake and although unsuccessful, I am proud for him trying. I think he was more upset with himself that he kept moving than I was. They just gave him GA and he is in the machine now.
Maybe next time he can do it awake...we will keep praying.
Results are next week and my plan is to just not think about it till then. He is feeling good and hasten I to say, I think he lost 1 1/2 pounds. Not much considering he fasted today but heh, every bit counts.
We are working on better eating and more activity and some days of course that is easier than others. But we have big plans at PEZAMANIA in July and Camp and lots of other fun. SO we press on and more excitement and fun ahead. Of course Luke still thinks everything is boring but that is just Luke!
The nurse at MRI calls him PEZ and he thinks that is so cute. While he was a little drunk with meds she said Luke that is why I love you and he said, RIGHT back at you!
It was so sweet.
Today I was thinking about all the MRIs we have experienced. All the days we have sat and waited holding our breath and all the good, bad and stable. It is an amazing journey although I can honestly say that 7 years later I am calm. Of course next week I will again wait to hear good, bad or stable but I think the past 7 years have helped me take it all with open ears and thought. After all, it is what it is and when we know, we make the decisions and press forward.
Lots of contact with families, those that thrive and those that lose their battle, has reminded me the journey is a long one and it is part of our life. I say brain tumor like I say pizza, we talk of meds and tests like most speak of tv and radio. Nothing surprises us much anymore and Luke has taught me to just keep moving.
We thought it amazing to hear a 3 year old speak of chemotherapy like most speak of a toy or a food. 7 years later I am still in awe to hear him tell the tech of his drug allergies, his contact allergies and what happens when "you don't read the chart". He cracks me up.
OUr kids grow up too quick but what is the choice.
Tomorrow he has a birthday party to go to and I am so happy for him. He has not spent any time with his friends since school ended and this is the perfect therapy for Luke.
More later. Fingers crossed. Calm and peaceful.
Nicole
Thursday, June 18, 2009 2:52 PM CDT
Luke obviously is missing school so much he decided to use all his book covers as hats...all at the same time.
We have been keeping ourselves busy cleaning up at after the end of the school year and trying to keep them busy while I work and do what I need to do as well.
Yesterday we stole an afternoon and enjoyed Night at The Museum 2 which Luke and the girls loved. Sunday we enjoyed a Bridal Shower for my future sister in law, Tara. The rain stopped for one whole day and it was wonderful.
For June, I think we have had 13 days of rain out of 18. So you can imagine what else has been going on...boredom.
Luke is doing ok on boot camp which started this week. We are aiming for 30-60 minutes of exercise each day and better dietary control. The rain is not helping!
We have signed up for summer reading and begun our summer homework. Luke cracks me up...he emptied his bookbag the last day of school and then started packing it with new supplies for next year. He is such a man on a mission. Too funny.
We have also participated in a fundraiser garage for a rare disease MPS/San Fillipo to help a family originally from our area who has 2 children both affected.
For me...it served a dual purpose...I love purging in the spring.
PCFLV is busier than ever and just moved into new offices. Talk about cleaning out my house...i can finally breath!
Big News...Luke received 1st place in the PA Council of the Blind Essay Contest. We traveled to Harrisburg and Luke received 2 awards, $50 as well as a declaration from the Senate and the House of Representatives. He was stoked!!
I hope this works...Wait for this video to load...it is sort of cheesy, but we could not have been prouder of Luke's hard work and his dedication to this craft...Braille!
Italia was pretty good too and we really enjoyed visiting the Capital and the Rotonda. More pictures on site.
Nicole
Wednesday, May 27, 2009 10:33 AM CDT
**Picture is 2003 with Luke is a tuxedo and Peter Yarrow holding him (yes Peter from Peter, Paul & Mary). Later that night he sang Luke Puff the Magic Dragon...it was magic! **************
So the adventures keep me so busy i hardly can update regularly anymore.
Another fun weekend ... Luke for the 1st time in a long-time embraced the Pocono weekend without too much complaint. That in and of itself is momentous. They really had fun with the cousins Maddy & Kolton and enjoyed food, fun, face painting and the beach.
Unfortunately Italia accidently got some peanut butter and ended up the ER for 5 hours. Luke was a mess crying and worried for his little sister. He is so cute. Although truth be told it was quite scary to watch her mouth swell and wonder if her throat was next.
Luckily they kept us long enough in the ER for the digesting food to cause havoc to her respiratory system. We "fixed" her up and then headed home.
Now we are all on super red (peanut) alert!
Today was Luke's 504 Plan meeting. It is always amazing to me each year as we review his needs and his progress, how much progress he makes. Truth be told it has little to do with me and a LOT to do with his therapists, teachers and those involved in his treatment.
Medicine only takes you so far...the rest and the quality of that is all the community around you. His teacher, as you all have come to fondly know, MRS. B is one of those amazing teachers who you will treasure and long remember after you pass through their grade. I had such a teacher in 4th grade coincidently, Mrs. Martz, and her impact on my life is always felt. So will MRS. B for Luke I am sure. Thank you Mrs. B!!
Luke is getting tired...schools end is in sight and I am sure we all are looking for a little summer rest. Besides, Luke has big plans at PEZAMANIA in July!
I actually found some PEZ Luke did not yet have so now he has to earn them this summer...motivation people, motivation!! We will see how that works but I am confident he will do it!
Alexis and Isabella continue to do well. Alexis' softball season is almost over and although they did not win too many, they did grow as a team and next year, will be even better. Isabella finished swimming and it a fish in water now.
It is great to see them thrive as well and thanks to all their friends who support them and keep them grounded and well loved.
Enjoy the week, albeit a cold wet one. More is to come...
Nicole
Friday, May 15, 2009 5:26 AM CDT
(Above Picture is after Luke's initial brain surgery, 7 years ago...)
Today is Luke's 7 year Anniversary of Diagnosis. Thanks for everyones support over the last 7 years. Cheers to another 70 we hope to come...
We will be celebrating. We will be remembering. Mostly we will be focusing on fun...after all even when you are "healthy" that passes too fast.
Best to all...
Nicole
Monday, May 11, 2009 7:01 AM CDT
(THIS IS Luke when he graduated Kindergarten...time flies)
When the good Lord was creating mothers He was into His sixth day of "overtime" when the angel appeared and said, "You're doing a lot of fiddling around this one."
And the Lord said, "Have you read the specs on this order? She has to be completely washable, but not plastic; Have 180 moveable parts... all replaceable; Run on black coffee and leftovers; Have a lap that disappears when she stands up; A kiss that can cure anything from a broken leg to a disappointed love affair; And six pairs of hands."
The angel shook her head slowly and said, "Six pairs of hands... no way."
"It's not the hands that are causing me problems," said the Lord. "It's the three pairs of eyes that mothers have to have."
"That's on the standard model?" asked the angel.
The Lord nodded. "One pair that sees through closed doors when she asks, "What are you kids doing in there?" when she already knows. Another here in the back of her head that sees what she shouldn't but what she has to know, and of course the ones here in front that can look at a child when he goofs up and say, "I understand and I Love You" without so much as uttering a word."
"Lord", said the angel, toughing His sleeve gently, "Come to bed. Tomorrow..."
"I can't," said the Lord, "I'm so close to creating something so close to myself. Already I have one who heals herself when she is sick... can feed a family of six on one pound of hamburger... and can get a nine-year-old to stand under a shower."
The angel circled the model of a mother very slowly. "It's too soft," she sighed.
"But tough!" said the Lord excitedly. "You cannot imagine what this mother can do or endure."
"Can it think?"
"Not only think, but it can reason and compromise," said the Creator.
Finally, the angel bent over and ran her finger across the cheek. "There's a leak," she pronounced. "I told You. You were trying to put too much into this model."
"It's not a leak," said the Lord, "it's a tear."
"What's it for?"
"It's for joy, sadness, disappointment, pain, loneliness and pride."
"You are a genius," said the angel.
The Lord looked somber. "I didn't put it there."
(Happy Mother's Day)
Friday is Luke's 7 year Anniversary of Diagnosis. Thanks for everyones support over the last 7 years. Cheers to another 70 we hope to come...
Nicole
Monday, May 4, 2009 9:08 AM CDT
Thanks MaryPat...i wrote an update but evidently it did not post...go figure.
So let me see if I can recap everything I previously wrote.
First off, where is the time going? May 2009 already...yikes.
Second, everyone is great. Luke has made it through his series of appointments including Washington and Boston and the millions in Philadelphia and aside from ophthmology next week, we are good to go.
The news is great too. All of Luke's second opinions are in agreement that a watch-and-see approach is prudent at this juncture. Of course this is music to my ears. The chemotherapy drugs recommended are harsh and are relatively new. ALthough good results are being seens, the toxicity is also being seen in as little as 6 months especially in relation to the kidneys so for me...although we may eventually have to go that route, this is a welcome reprieve.
Luke is feeling great thanks to Mary Pat's special cookie delivery which arrived on the hotest day of month and were opened nice and soft and warm as though they came out of the oven. Healthy my butt!!
Luke's blood work still shows we need to keep tweaking his hormones. His thyroid was still low so we increased the dose, his cortisol is still testing low so we will repeat again before we have to do a stimulation test.
He is also on some extra Vitamin D because that is low too which just confuses Luke because he drinks so much milk...
His behaviors have been good which pleased Boston's team as well. They were thrilled to hear about all his therapies and last Friday, in the rain, LUke walked 4 1/2 miles from Front Street, ALlentown to Trexler Park, Allentown or roughly 36 city blocks.
Of course he stopped for a slice of pizza at Salvatore Ruffinos but all in all, what a champ.
He still complains a lot about being bored and if you can imagine, hating his life. But this is usually when the world doesn't float his way and he has to follow...dare I say it...RULES.
This is especially hard with the food as I am the enemy and poor LUke with the mean mommy. I wish he could get on board and be invested too, but I guess I am expecting too much for a 10 year old. I wish he did not have to worry about such things...
He has continued to grow his PEZ collection...surprise surprise and because he had a good report, we are planning on going to Luke's first Pez Convention in Ohio, PEZAMANIA 2009 in July.
He is ecstatic to say the least and again thinks I am mean for putting at $100 budget on his spending that weekend.
We have a few other items up our sleeves for the summer to keep hopefully everyone happy. The good news is Italia is potty trained...although she still allows herself a few accidents now and again much to my chagrin.
As for me, our 1st Golf OUting for PCFLV was a blast. Things are busy keeping the foundation moving but I guess I wouldn't have it much any other way.
Thanks for your cyber hugs and well wishes. Luke loves all the notes and we all appreciate the prayers and well wishes.
N
Wednesday, April 15, 2009 6:53 AM CDT
Of course, things never run completely smooth.
Alexis was playing popcorn with Isabella on Easter Sunday and "popped" her head right into Isabella's front teeth. Pushed them right up in her gum...talk about blood and her gums were black. I had to call the dentist and do triage over the phone. Luckily they are her baby teeth so their exit from her mouth shortly has all but been guaranteed.
We took x-rays and will watch them for a while. Today I just realized part of a filling in my mouth is now missing...when it rains it pours.
Luke's back was full of marker and patch goo on Friday so after showering I tried to remove some of that. By Saturday, his back was inflammed all red and irritated. I put the steroid cream from the hospital on while I waited for the pharmacy to order his new prescription. By Sunday it was covering his whole back and by Monday getting worse. Of course, our luck we would end up in the hospital another 3 days but finally today the new cream seems to be helping and the irritation has turned a corner.
I did call dermatology yesterday to tell them...they said to ask the doctor we are seeing today or see the pediatrician. If you watch Grey's Anatomy, remember the episode where they find Dermatology and it is like a tranquil spa...I think for real that is the best medical job. No hurry. No rush. No emergency. Even when it is an emergency they take their time and really, what are you going to do...
Unfortunately, Luke is allergic to crazy stuff already, now he has contact allergies and we need to find new products for him...more work Yeh!
So, this parent thing is keeping me quite busy. Between teeth, backs, brains, potty training, and my own migraines, I am exhausted.
I don't anticipate much surprise today on our trip to DC to see Dr. Packer but I feel it is a necessary trip and opinion. In 2 weeks we are flying up to Boston and then in May, we will take time to digest the last few months of craziness.
In the meantime, I have just popped a happy pill, I have my coffee in hand and I am on my way out the door for another endless day.
Be good to yourselves and your kiddies. Despite the craziness, it is good once and a while to stop and eat the chocolate...guiltfree!
N
Wednesday, April 15, 2009 6:53 AM CDT
Of course, things never run completely smooth.
Alexis was playing popcorn with Isabella on Easter Sunday and "popped" her head right into Isabella's front teeth. Pushed them right up in her gum...talk about blood and her gums were black. I had to call the dentist and do triage over the phone. Luckily they are her baby teeth so their exit from her mouth shortly has all but been guaranteed.
We took x-rays and will watch them for a while. Today I just realized part of a filling in my mouth is now missing...when it rains it pours.
Luke's back was full of marker and patch goo on Friday so after showering I tried to remove some of that. By Saturday, his back was inflammed all red and irritated. I put the steroid cream from the hospital on while I waited for the pharmacy to order his new prescription. By Sunday it was covering his whole back and by Monday getting worse. Of course, our luck we would end up in the hospital another 3 days but finally today the new cream seems to be helping and the irritation has turned a corner.
I did call dermatology yesterday to tell them...they said to ask the doctor we are seeing today or see the pediatrician. If you watch Grey's Anatomy, remember the episode where they find Dermatology and it is like a tranquil spa...I think for real that is the best medical job. No hurry. No rush. No emergency. Even when it is an emergency they take their time and really, what are you going to do...
Unfortunately, Luke is allergic to crazy stuff already, now he has contact allergies and we need to find new products for him...more work Yeh!
So, this parent thing is keeping me quite busy. Between teeth, backs, brains, potty training, and my own migraines, I am exhausted.
I don't anticipate much surprise today on our trip to DC to see Dr. Packer but I feel it is a necessary trip and opinion. In 2 weeks we are flying up to Boston and then in May, we will take time to digest the last few months of craziness.
In the meantime, I have just popped a happy pill, I have my coffee in hand and I am on my way out the door for another endless day.
Be good to yourselves and your kiddies. Despite the craziness, it is good once and a while to stop and eat the chocolate...guiltfree!
N
Saturday, April 11, 2009 3:59 PM CDT
Today I just learned that my grandmother died. She has sort of lost it the last year or so anyway and my last conversation with her was some time ago.
She was a zany crazy woman. Stubborn and set in her silly ways. She loved to shove food in your mouth when you would come visit her, but her life has not been her own for some time.
She survived many heart attacks, strokes, deaths by chocolate and in her 94 years she never lost that little bit of piss and vinegar. Some took advantage of her. Some tried to help her. But in the end, she road the journey mostly on her terms.
I will miss her. But truthfully my best memories were from a while ago anyway. Those I will treasure forever. Ironically, my other grandmother passed away in 2001 at Easter time too.
Luke continues to do well. His visits to the dermatology department proved useful and now we have a new complete list of contact allergies he has and an equally impressive list of what are safe products for him. God must think I am bored.
Any who, Luke won a Braille contest recently. Truth is I actually forget what the prize is and what the story line was but he wrote a story about something important to him...PEZ...and the history etc. Then he brailled the entire report 4 pages I think. He WON 1st place and has been invited to the Capitol at Harrisburg to accept his prize in June.
I will fill in more when I get the specifics.
Until then we are working on animal reports, Easter math, studying for tests, and the like.
I made myself crazy today by heading to the grocery store and now I am exhausted. So more later...Happy Easter to you and yours.
Sunday, March 29, 2009 9:47 AM CDT
So the dust has settled on a busy week and I feel tired.
Heather's service was beautiful; her parents are amazing and to be surrounded by our Camp Sunshine family numbering at least 14, was incredible. It was a joy to drive 4+ hours to be with them...for only they understand.
Thursday we reviewed the MRI with the docs. It was much as expected. Some areas have collapsed into the cavity created by the surgery, a cyst seems bigger...the pictures are interesting to compare as you really cannot compare...a good thing.
They are recommending we start a chemo protocol that is clinical trials and has opened in November 2008 to low-grade tumor recurrence such as Luke's. But, like every new drug...there is a lot unknown.
The doctor told me that sometimes those who are "smart" and read a lot, have the hardest time making these decisions. Truth is that is part of it. I want to be convinced that this is the best course, not just the ONLY course left for Luke. But as I explained to the doctor, the medical treatment is only part of the treatment.
I have to balance Luke's medical choices, with his quality of life, his friendships, his school, his enjoyment of life. I have to also balance that with the lives of 3 other beautiful children whose lives have already been wholly about brain tumors and their devastation. Who as they get older, realize more and more that their brother could die like Heather, and Devon, and so many others before them.
I have to balance the treatment, the sickness from the treatment, the coordination of their lives with the intense protocol schedule requiring numerous trips back and forth to the hospital every month.
Almost 7 years ago that was an easy decision. We were fighting to save Luke's life. Of course, we are still fighting to save that life, but that fight has become a fine balance of being a live and living. Maybe some will read this and not understand ...to some the decisions is all or nothing. But for me, the decision needs a little more time. So I will take that time...I will seek out some more opinions. I will ask some more questions and we will review where we are and see where we can go.
The best news however, is Luke continues to thrive. He is back to himself, albeit with some hormone deficiencies creeping up. His energy is down and his weight continues to go up but we are working on fine tuning meds to help and to determine some exact causes.
In the meantime, he is at school full time. Loving Mrs. B and his class. Complaining he is BORED, and verociously seeking out new PEZ for his collection.
The girls are getting into the groove albeit with bumps and bruises. It is an adjustment for them and as they get older, the jealousy of time and energies focused on Luke becomes more of a challenge for them to understand. Another factor is all our decisions.
I am thankful for their friends that help keep them busy and loved. And we are of course very thankful for our friends who keep us surrounded with love and friendship and HOPE.
Today another brain tumor kid is dying. His name is Russell and it is so unfair. SOme days it is all I can do to not cry all day. But, something struck true to me today that I heard from Monsignor. He spoke of the wheat seed that must die to bear more fruit. We can never understand why kids must die or make sense of that loss...but, I do find peace in knowing that for every cancer kid I have known, their lives albeit short, have been rich. Their lives have touched SO MANY people that we can never even dream to reach. Their seed, has borne so many fruits....
Nicole
Tuesday, March 24, 2009 7:06 AM CDT
I sit here at CHOP awaiting another MRI to finish and thinking again as I do so many times, of the senselesness of it all. Sure, my life would be quite dull without a brain tumor in our lives and those of so many of our friends, but again I think dull can be spectacular in light of the ridiculous consequences. Today I told Luke of yet another life lost, our dear Heather Oney. I try to spare them some of the pain we all feel, but they know Mommy is leaving tomorrow for another funeral of yet another lost friend, a beautiful girl, an amazing smile, a life yet to live. And, now so many of our brain tumor friends are fighting really hard...it hurts, a lot. I met another brain tumor kid in our area...they are the rarer of the bunch. He is younger than Luke, but a lot like him in spirit and his parents have become warriors too.
Luke continues to do great and amaze us all and for this I am truly grateful. But for our "family" who suffers with larger setbacks...we wish for it to all disappear.
Luke is starting to have some hormone declines and lately has been quite laid back and a bit lethargic. He was up bright and early today to head down to Philly by 5am but by 7 am he was getting grumpy. He is missing IOWA testing today and Thursday and I said wow, Luke how are you going to make that up and he said, don't worry mom, Mrs. B will figure it out. But why did you go and schedule my appointments during testing.
Awhh as if it was that simple. When I have that moment in time to freeze, to look around and to assess life and those in it, sometimes I am saddened by the speed at which my life has passed me by. More so I am saddened by the speed of Luke's life and how he has had to grow up too fast and force our life to be in a race all the time. I wish some days we could sit back in the sun carefree and just exist. But it is not a dress rehearsal and I guess that is how we keep moving...we have to. We have been so blessed by the friendship of so many and the company and kindness of those around us...but it doesn't change the part deep down that cannot hide that this really really SUCKS.
so, please say extra prayers for Ryan, Ricky, Russell and especially these days for Bill & Beth Oney ... for Heather was a gift and I know they are missing her so so very much ...drop them a note perhaps www.caringbridge.org/visit/honey
Nicole
Thursday, March 19, 2009 3:03 PM CDT
Blood work is relatively normal...Luke is going to start some thyroid replacement, and his weight is up again, but we are moving forward.
Hopefully once we get his hormones back in order, it will help the weight. Aside from that, we will be walking, walking, walking hopefully to a few less pounds!
everyone is back in a groove albeit a busy one. Luke's schedule is still full of therapy and homework, but luckily Mrs. B is amazing and super and wonderful and a dream for Luke!
The girls, especially Alexis, are still adjusting. I think Alexis is adjusting to her own self too, as her poor me routine and drama gets a little old after a while.
I am busy as always, trying to stay a head of the pack which is not always feasible.
Thoughts to all our friends ...looking foward to sunny days and warmer weather as it always makes me feel better!
Till later! N
Tuesday, March 3, 2009 6:56 AM CST
ABOVE: Luke & Lexi "cooking" at Sagra **************** Luke had a good weekend, made better by a snow day yesterday. Although he slept 3 hours in the afternoon, I am sure today he will be well rested for his first attempt at a return to school full-time. Godspeed to Mrs. B!
Meanwhile, Italia still refuses to potty train. She was so close...now so far. She said she wants to be a baby and wants to wear diapers. Go figure...the last is the hardest!
Otherwise, we are full steam ahead getting back into the groove, of course still with the strength and help of our friends. The dinners have been wonderful...and delicious!
Isabella just finished basketball and swimming all in the same week, and is anxious for something again as it keeps her busy. Plus, this time it gave her special one-on-one with Aunt Sue. What could be finer!
Grammy and Pappy are celebrating their 50th wedding anniversary this month so we are planning to enjoy that as well as the 1st day of spring. Lets hope this was the last snow.
I would like to report that I was going to take a break from the home remodeling for a time, but yesterday Italia tore wallpaper in the kitchen and Isabella tore a large piece in the powder room. Oh great!
SO we are hoping for warmer weather, and I am hoping for catching up on some sleep. These days find one or 4 of our kids in our bed which makes for bad sleeping for Mom and Dad. I think the kids sleep great but what gives...cut the cord people!!
On the plus, Luke has again added to his PEZ collection with the help of his "friends". Ms. Sylvia knows everyone as we all know and scored a hard to finder in Ohio at a small gas station.
Luke now needs anyone from Austria, Vienna preferrably, to help find the Sissy & Mozart in the tubes. He is obsessed in case you have not figured it out and some days, I would like to rip the computer from the wall...darn Internet. Whatever did we do before!
Prayers for those who are not feeling as well these days and to all our friends.
More later!! Nicole
Thursday, February 26, 2009 6:47 PM CST
Things are settling down here a bit.
Luke is keeping up with his 1/2 day and there are less headaches to report!
He is doing his homework but has not yet had the energy or the determination to work much on that "make-up" work. Perhaps this weekend.
Luckily Mrs. B is awesome and rather than the Tylenol, I will slip her some Vicadin or the like! Maybe that will help her "tolerate" Luke's comeback!
The girls are settling in too. A couple loud screams occasionally are heard breaking out our windows but luckily Alexis' friend always come to the rescue and scoops her off to her house to play.
Some days it is amazing what one less kid can do to the dynamics.
Italia is still refusing to potty and of course, getting in to all kinds of trouble. She just wants some attention and no one really wants to play with her...struggles of a 2 year old.
In the meantime, Luke has determined he needs these new PEZ: Washington State University Cougars Football University of Washington Huskies Brigham Young University Cougars University of Utah Utes – Mint on Card Pete the Cat Star Wars: The Clone Wars – Set of 3 new characters
which have just come out...if you can imagine.
As for me, I am trying to use the time stuck at home to finish up the never ending household projects and hopefully the bathroom will be back and usable by this weekend!
Love to all. Thanks for all the prayers...the power is unimaginable.
Check out Alexis site to say HI to her too: http://www.babiesonline.com/babies/r/rosierose/
or Isabella http://www.babiesonline.com/babies/b/bellanicole/
as I know they appreciate the LOVE too!
More later...my eyes are drooping already!! Coffee take me away...
N
Tuesday, February 24, 2009 5:31 AM CST
Luke had his 1st day back of school and no finer medicine is there than the company of his buddies!!
He only went a 1/2 day but he came home with a smile. He also had a headache but after resting and Tylenol he was feeling better.
Today he said he is taking Tylenol before school...watch out Mrs. B!!
So, we are very happy with his progress. It is hard to believe 2 weeks ago he went under the knife deep inside his brain. Just to say it out loud seems implausable. But, he is a walking 2 week post brain surgery miracle.
We still have big decisions ahead depending on the tumor ...keep praying the darn thing curls up and dies!
Until then, we will keep moving forward.
We appreciate the kindness of so many and everyone who continues to look out for us!
The girls are doing well too...thanks to everyone for keeping them busy!
I feel better...still a bit on the slippery slope but hopefully climbing back up. There is still so much moving forward that we have to resolve and well, one day at a time.
Now I need to go finish my coffee and wake the girls!
N
Friday, February 20, 2009 2:24 PM CST
Well no news is good news.
We have been laying low, trying to get in a routine and really trying to get Luke to relax so potentially his headaches will also.
He is somewhat back to the old Luke in that he is short tempered and yelling at everyone.
I am mentally tired as he drains everything out of me some days.
The girls are fine...doing great. Isabella still has TOO much energy and won't stop bopping around the house mostly getting on my nerves. Alexis is mostly helpful but every once in a while shows up home from school in a foul mood. And forget if I limit what they can do...all H>LL breaks loose.
Today I tried to go the bank and some errands but it ended in chaos. Now that the girls are home, Luke is yelling how psycho they are and of course, he actually is acting it.
Did I mentioned I was mentally tired?
So Tylenol is the abused drug of choice and I spoke with his doctor to see if there was a limit on how long he could stay on this. I think overall he is feeling better, but everything sets off headaches and he is in pain.
He does sleep alot but then is up at night complaining of headaches too and forget mornings, he is up at 5am watching TV.
Everyone has been so wonderful to us and the dinners have been a great help to me. If I could just hit the mute button in my house, I think I would feel better.
But, as I have aged 20 years in the last few weeks, I guess this is what 60 feels like.
At any rate, one day at a time. I did try to get some work done this week too...imagine that and I am working feverishly on our upcoming April 27th Golf Outing.
So any golfers or sponsors...let me know!! www.pcflv.org
Next week we will see if Luke can get back to school, at least part time and maybe the friends and the routine will help. Nothing here seems to be sufficient...including his exercises!
His Orientation/Mobility therapist worked with him this week and that was awesome. Luke really responds to him and he did get 2 good work outs in.
For my part, this homebound thing has allowed me time to finish stripping the wallpaper in the never-ending bathroom project as well as rearrnage the kitchen cabinets. Oh yeh!
Luke is yelling shut up at the 2 year old...time to intervene.
More later N
Wednesday, February 18, 2009 5:32 AM CST
Luke had a fabulous day yesterday and hasten I say it is already starting to get bored!
He is still tired during the day and naps but today we are going to try to get him really moving with this therapist. This will help recondition him and also hopefully help in the weight regard which is a hypothalamic issue that we cannot fix but really need to start controlling!!
More important though are PRAYERS needed for our friend Ryan Z. He is battling a rare cancer and has been on chemo for some time. We stopped to drop off his belated birthday present and his mom said he was not doing very well. He is not speaking and cannot get out of bed.
It is devastating and as we cried a moment at the door, I said this SUCKS. Why Why Why...
So, please please storm the heavens for Ryan and his family including his twin sister.
Pray for healing, pray for peace, pray for comfort. The family is holding out hope because otherwise what gets you out of bed...but the prayers have been so powerful for our family, we need some directed at Ryan now.
Love to all Nicole
Monday, February 16, 2009 7:29 AM CST
above picture is of Super Nurse Karen and Luke when he was diagnosed at age 3>
Ok so its my birthday today...in case you didn't hear. HAHAH
Time for reflection and interspection on life huh? Well, I slept well last night even when my rascals all ended up in bed with me by morning.
Luke's face is a bit more swollen today and those darn headaches but otherwise improving.
Dinner last night was outstanding thanks to an amazing lady Mrs. Glover. She even had her special mint to help Luke...instead she took care of Isabella's splinter. She never stops!!
All in all what a year it has been for me. Nieces and nephews are having babies and of course as I watch the process I remember not so long ago being pregnant with Luke and the 10 year journey since. Wow how far we have all come. Those first years were blissful...we had no cares in the world and everything was perfect. Then our world exploded, our plane landed in Holland and we have been finding our way ever since.
I hate to say that this brain tumor has defined us, but quite honestly it has defined us...individually and as a farmily. Sometimes that sucks to admit, but for the most part, the enlightenment of such a diagnosis is immeasurable.
Some day when I write my novel, I hope to share the wealth of spiritual growth I have experienced a long this journey, the compassion I have witnessed first hand, and the strength of prayer and of family. I hope one day to really express the connections people make, beyond those commercials we laugh at or the 7 people removed from Sylvia Pituch study I am still working on. I hope one day to be able to thank everyone that has touched our lives in so many ways and the families who have faced similar journeys, for the children who have not made it and the ones who keep fighting. This is as real as it gets...
I think it has been said, although in jest, that most of the United States was praying for Luke on Tuesday. But honestly, we feel the love.
Luke received a belated birthday present from Jeff and the cast at Mary Poppins on broadway. OMG...it is so amazing. Luke and I want to go up there so much and see the show (last time we were up we could not get tickets). PEZ have taken over our house...because people have taken Luke's passion (obsession really) and embraced it...all for him and it has taken on a life of its own.
There have been very few days when Luke has asked why God doesn't take his cancer away. Not that he is angry or blameful, but through his own spiritual path he wonders why if he could, he doesn't just reach down and fix all these wrongs in the world. It is hard to explain that God's plan is not our plan...but it has been easy to show the love of God all around Luke. It has been easy to show that God hears the prayers and is answering them. It has been easy to show Luke all the things in life that are really important because of all of you...
Last week I envisioned Luke's funeral. I tried to envision where it would be and how I would get through the planning and the organizing. Of course there would be loud music...probably Queen and Daughtry. Of course there would be PEZ and Eagles. I cannot help it but my mind navigates in that directions too often sometimes.
Today I envision spring and summer. I envision Luke getting back to himself both physically and mentally. I envision him finding excitement again and drive to succeed again. I envision him always surrounded by love and for him to find that peace.
Last night...he sang karoke. He sang Brown Eye Girl and We are the Champions. Last night he played Guitar Hero badly. But last night he was a 10 year old kid. A quieter version of the old Luke these days. A slower version. A slightly swollen, very cushnoid, verion of Luke.
Someone said how different Luke looks without his glasses. He has worn those for so long (only for protection...he has 20/20 vision) that it is funny to think that it has become part of his composite. Today despite his incision, his swollen face, he slow pace and demeanor, he put those glasses on and Alexis said...Luke looks like himself today. Go figure!
So, amidst my rambles, today I am thankful again for so much. I wish somedays to be on a different ride. Maybe even one of those folks I sometimes feel sorry for who are so blissfully lost in their own world they don't see the rest of the world as clearly. We broke those rosey colored glasses 7 years ago. But we are on the path less chosen as Emerson would say, however not by choice, necessarily, but maybe by design.
Today I have simple wishes for my birthday. MOre peace. Less pain for Luke. More laughs and more of less.
I think I need to go clean out Alexis' closet now...hahahahah
More later N
Sunday, February 15, 2009 11:09 AM CST
Yesterday was ok...Luke is still doing well and moving better than ever.
His face, however, has started to swell in his forehead and his eyes...he has an oriental look right now!
In my panic of everything, I snuck in his room 6x times last night to make sure he was still breathing and then finally crawled in to sleep with him.
Today, I called the neurosurgery fellow to check on the swelling...from their perspective they are only concerned if there is a fever.
His headaches are really often but not above a 4 or 5 out of 10. I feel like I am constantly giving him meds though to make him feel better.
But, I also know that such a surgery takes a long time to heal from. I remember how long it took last time and we did not even leave the hospital for almost 4 weeks.
I am trying to keep myself busy to calm my nerves and remind myself to eat...I haven't done that yet today.
I need to get out of the house too...the weather today seems perfect for a walk with Monte.
Our house if full at the moment with everyone home now and Isabella and Alexis and Italia haven't missed a beat.
We will post more...Luke needs blood work Monday or Tuesday and then I need to set up his follow-up appointments.
On the plus, his allergic reaction dermatological irritation looks awesome.
N
Saturday, February 14, 2009 1:25 PM CST
SSSSHHHHHHHHHHHHHHHHHHH.............
Can you keep a secret?
we are home!!!!
Luke is having a lot of pain today I think because we are home and he is adjusting and out of bed a lot.
He had a bit of a rough night last night and was up a lot and complained of more headaches so we hope taking it easy and trying to keep him relaxed will help.
I am about to curl up on the couch with him and watch a movie.
I will write more later!
n
Friday, February 13, 2009 6:55 PM CST
It has been a great day...Luke has already turned another corner and is doing much better.
He still gets fatigued quickly but his doctor visited last night and is pushing him to get back to his "life" as soon as he can.
of course, he cannot do any sports, gym, recess or the like but the comforts of home, family and friends will be unsurpassed.
Now, I am going to cuddle up with Luke and watch a movie!!
N
Thursday, February 12, 2009 7:23 PM CST
Luke is tired but the good news is we are on the Oncology Floor (Ronco Unit...lol).
We have started to get him to rehab a little and today the old Luke emerged with yells and orders and balks of protest. But we have been persisting with help of Aunt Pam & Aunt Sue and OT therapist Erin.
Tomorrow we hope to kick him in the butt a bit to get him in action and help recondition him. I know once we are home it will help a lot too but I am hesitant to get him out of here too quick because he always listens to strangers more than me!
His oncologist is happy with his progress and is ready barring the above to move him on home too. We know pain may be a factor as well and he is on board to supplement whatever is necessary to remove pain from the equation...I am trying to talk him into prescribing me the Oxycotin too!
At any rate, I feel good. We are really so amazed at where we are today. I keep reminding myself at we are 2 days from major brain surgery. 2 days from cutting his head open, removing the skull like a teapot, pulling the right hemisphere aside and digging down deep to an orange and gray gooey substance. Then, scraping, digging, sulking and closing all back up and getting out.
He is moving well, peeing pooping, eating, and talking back...all Luke!
So, we may be home this weekend or we may add day or two to make sure he is on the proper path rehab wise.
No contact sports or anything without both feet on the ground (including Phys Ed) for 3-4 months but I am anxious to get his Mobility/OT therapist involved asap to help get Luke on the right track!
School can be potentially in as soon as 2 weeks...Mrs. B are you ready?????
So, we really have to take a step back, and be in awe. So much has happened and of course, we have a lot moving forward but I think we are just so blessed to be where we are.
next MRI is 6 weeks and then we hope to have final pathology and discuss future treatment plans. Oncology is pushing for another immediate chemo protocol for 12-18 months which I feel requires more discussion to finalize or decide.
Oh and yes, today we saw Ophthalmology and his vision was STABLE 20/20 - 2 which is unbelievable. We told Luke how much he has to be thankful for. His 2 biggest fears were dying and going blind and neither happened.
He is not out of any woods, but the marathon is long and this sprint is over.
Our next focus will be to getting him home, active, acclamented and then, integrating our family back together.
Karen & Steve are a godsend and have put up with my girls moving in on their lives with smiles on their faces and Steve has been adopted by Isabella as her pseudo-daddy complete with carrying her, smothering him and probably big wet juicy kisses! She is such a lover!
But, I am sure the focus on Luke will again cause ripple effects for them, after all they are only 6 & 8 and only human. I know it is hard to have so much of my attention for their whole lives centered around their brother. A brother who is not always nice to them. A brother who doesn't always act as he should. A brother who has problems they may never fully understand.
I hope one day they realize that we have done our best for them. That we have tried really hard to balance an act that is sometimes impossible to balance and we have tried to be as fair to each of them as we humanly can given the situation. I hope they realize and remember that we love them so much and they are just as important and we would drop everything for them if the roles were reversed.
I thank their friends for being a support for them during this time when they are probably tired of hearing about Luke this and Luke that. I thank their friends for keeping them grounded and for giving them much needed joy and happiness and sparkle too.
I hope one day to clone myself to feel less guilty about the choices I have to make each day to get done what needs to get done. I hope one day to believe that I have done everything I could for everyone I needed to and that they all were better for it. And one day I hope to realize that it is ok not to be perfect and to have some you love disappointed in you and wanting more.
But until them, I will carry that maternal burden. I will put up with the eye rolls and the fights because one day I know they will all be parents of their own and realize much as I did that our mother was not all that bad and they had to make tough choices every day and almost always without a life raft or a guidebook.
Nighty Night.
N
PS: I gave Luke a shower tonight and washed his hair...is he handsome or what? A few more weeks of healing and we can almost do a complete comb over!
Thursday, February 12, 2009 7:59 AM CST
Today has started off pretty busy already. Overnight I tried to get sleep but Luke kept calling me...it was so cute in his little voice as I lay in the chair next to him...Mom, Mom, Mom, Mom...usually by the 4th Mom I woke up.
He had good pee output overnight and his sodiums returned to normal which is UNBELIEVABLE!!!!
We are waiting for rounds to make their way to us so I can push for the IJ tube out of his neck now that his counts are good and sodium is good and get him moved off PICU to the oncology floor. What an amazing feat just 2 days after surgery.
Luke pooped this morning so Syl, we don't need those marbles after all. Another good sign. Kinda like after you give birth, they don't let you go till you poop...you know what I mean.
So that all worked good. Luke's balance is better but he is very weak upper body so we hope to work on that today with OT and Mom after the IJ is out.
Tylenol has been controlling his pain which has moved up and down throughout the night. He did run a temp again overnight but that seems better too. Now he has a rash on his neck...darn skin is so sensitive...but we are still waiting Derm to show up so I have added that to my list for them as well.
Luke is not ready to come home yet, by any stretch, but from the medical perspective they are amazed...as they should. He is doing great.
So we will keep moving forward. Keep pushing him onward and keep being thankful for how far we have really come.
My appetite is back so you can all stop worrying...Carolyn left me lots of high calorie teeth decaying snacks to keep me occupied and Luke is happy to share his room service! I think John is actually getting the lay of the land here too which is nothing short of a feat to those who are directionally compromised like my sisters !! LOL
jackie & Amy drove from West Chester last night to visit Luke and it was so very special and nice. Thanks girls!
Luke loves all the messages. He cannot watch TV that well yet because of the position of his head so I have read Amaelia Bedelia to him and his web guestbook entries. He prefers that to my singing...
McDonald's coffee this a.m. was very good...but I hope WaWa makes another guest appearance. Or better yet, maybe his oncologist will bring that coffee he owes me from Dr. Coffee!!
More later...Luke is sleeping now. I will try to keep updating with pictures. I know some are icky but really the beauty is the strength of the little man who has never asked why or complained...he just plugs along. I think Carol is right...Man of Strength. Man of Courage. Man of Hope.
N
Wednesday, February 11, 2009 5:51 PM CST
So the day has been long and productive. Luke is eating ... again
He still has the central line in his neck which keeps him favoring one side and this has caused a bit of swelling on the other side.
He is still puffy and swollen and getting a little irritable at this hour but again those are all "normal" Lukisms.
He even found a position that allows him to watch TV...go figure.
All and all things still look good. They are still watching his sodium to make sure it stays normal and doesn't get too high (too low was not good, too high is not good, we need just right!)
Otherwise, everything else seems to be good. Pain is controlled and he is good about reporting when he needs more.
I am tired but feel better today. Fortunately, Wawa just came by with COFFEEE...yummy.
We will see how tomorrow is but we cannot ask for more Day 1 after major surgery!
I did get pictures to post when I get home to my scanner of the tumor before and after. I am trying to talk the surgeon into actual pictures from the microscope when they were inside his head...John thinks I am a freak of nature for wanting to see it but I really do want to see that darn tumor live and personal.
More later. N
Wednesday, February 11, 2009 12:29 AM CST
Sorry for the delay...computer service is depending on the construction around here...
Anyway, Luke is doing better by the hour. He is currently eating having advanced from clears to pizza, chicken fingers and rice.
We got him up in a chair and we are working to keep moving his body which is not currently moving very well.
He is still in pain but we seem to be managing it better and I have no doubt that removing some lines and keeping him moving will help toward that recovery.
Luckily, his hormone functions seem to be stable and that is great news.
We are busy today attending to Luke's needs and I am bound to get him moving for I think that will help him mentally and of course physically.
He is doing incredible despite all the odds and we are thrilled.
MRI this morning shows about 50% reduction in tumor. It is an amazing site. But, the oncology team still feels an immediate chemo protocol once he is healed for at least 12 months is necessary becuase most of what was removed was dead and the live tumor was previously growing so one would believe it would continue in that direction.
I am unsure. Not to disagree with them but just to let Luke get past this hurdle...and chilax!
So, I will sign off to attend to Luke and keep helping him progress today...we are hopeful, positive and blessed.
More later. N
Tuesday, February 10, 2009 8:16 PM CST
At this hour...things are a little calmer. My stomach is still in knots. Luke's pain seems under control.
He is now running a fever and he had some nausea. He did however want to eat...so that is a good sign.
He doesn't talk much. He doesn't move much. He is not himself...but we are working hard to get him to a better place.
He is sleeping and they are giving him antibiotics, stomach meds, steroids etc.
His face is starting to swell and he is a little flushed.
Some times I wonder which is harder...waiting for the surgery to end, or getting through the first 48 hours.
We had visits tonight from my sisters and Sylvia. Carolyn spent the afternoon with us helping coordinate. But we need the peace right now we have...quiet and bedside. Watching Luke constantly and waiting for him to improve.
I wanted to share the above picture. It doesn't begin to express the pain this little man has undergone. It doesn't begin to tell the story of fear or hope or pain but it does show you a little bit where we are and where we are trying to go. It may even show if you look at the other pictures, the hope for Luke for himself...he gave me that smile he promised he would come out with.
I am in pain personally watching him suffer. It hurts beyond words. But I know these scars will heal and I am confident that we will all help him get through ...
His sodium is of big issue right now...he is at high risk for diabetes insipidus and looking like it may head in that direction but it is too early to tell.
More later...after all it is my therapy and I cannot even consider sleep...
N
Tuesday, February 10, 2009 5:01 PM CST
Luke is out of surgery ...he is up in the PICU.
We are happy he is out and happy he is alive and things are going well.
He is in a lot of pain in his head and that is right now the toughest part for us. He is tied up to a lot of IVS and tubes and cannot move very well. His face is starting swell and we are trying to keep him sleeping and keep his pain as best we can.
He can see us...that means a lot and he does understand to answer questions and to respond to commands.
Dr. Sutton felt good that he got a lot out...how much we will know tomorrow. He said he got down the bottom but wasn't sure laterally how much he got.
I am thrilled, but I cannot let myself enjoy this moment quite yet because I want him to start the progress forward which only time can do.
He went in with a smile and he came out in a little pain but had Catty close by and had his post anesthesia wits about him.
So, we have taken a deep breath ...I feel I have aged 10 years in the last few hours but I am breathing again.
Tomorrow we will post more as the next 24 hours are critical on a lot of levels.
Keep the prayers coming...direct a lot for less pain for Luke.
N
Tuesday, February 10, 2009 12:29 AM CST
So we are 2 hours into the "surgery". 1 hour from actually cutting, 2 hours from sleepy land...
I have just finished reading When Bad Things Happen to Good People by Rabbi Harold S. Kushner.
It is a great book ...
What I am thinking right now, is how much I have grown in the last 7 years. I remember quite clearly those many years ago praying that Luke would not die. I prayed at MRIs for the tumor to disappear. For a miracle. For an intervention for anything.
I never asked why. I never will. More like, why not.
But what I have realized sitting here is that there are good outcomes and bad outcomes. There are good diseases and bad ones, good choices, bad choices, and God really doesn't just dish out at his own whim.
I remember asking for prayers when Luke went for Protons. Now I pray for strength and wisdom. I pray for abilities and not interventions. I guess that I am saying is that of course I want Luke to come out of this surgery perfectly and I am confident he will, or we will deal with whatever issues arise from that, but the importance of the prayers I feel now is knowing that we are not alone.
The prayers surround us not to cure Luke but to remind him and us that despite this illness that has befallen him, he is loved. That despite the number of days in his life, he is not alone. That despite the view people take on why or why not, the part that is most important is what we do with the time we have.
Luke has never asked why. He has asked why God can't make it better. It is not up to God. God made all things possible and we make some good and bad. Tumors really are cells. Cells make everything great about us...make us who we are. Just like God really isn't picking which sperm landed in which egg and made Luke, it happened because God made the ability for millions of sperm to "fight" for that one egg.
I never regret that he is who he is...for there can only be one Luke.
So despite my fears today, I am at peace. For I am not praying for a cure. I am praying for good skills, for good judgment by his doctors, for peace and comfort for Luke and for continued strength and wisdom for John and me so we can keep doing what we do.
Quote from the book:
I am a more sensitive person, a more effective pastor, a more sypatheci counselor becaues of Aaron's life and death than I would ever have been without it. And I would give up all of those gains in a second if I could have my son back. If I could choose, I would forgo all the spiritual growth and depth which has come my way because of our experience ...but I cannot choose.
******** So I too have said it before and will say it again. I would take Luke's tumor, pain and fear away in an instant if I could. I would reverse the hands of time and erase that spring day in May 2002 from our lives if I could...but I cannot.
So instead, I will be thankful for what the journey has taught us. What the journey has brought to us and the many people who view life differently or have been touched in a different way because of Luke, or our story, or of those of families who travel the same path. I am not the same person I was back then. I am better.
I am no better than any of you, but I am a better me...perhaps that is what we should pray for...for the guidance and perseverance to take the obstacles of our life and make them notches of our character. For all of you from so many walks of life, so many faiths and backgrounds and life experiences have come into our lives. Other families journeys have brought us comfort in an illness that on the surface makes little sense.
...so as we near the hopeful half way mark of this long surgery, we are positive, prayerful and thankful. Luke went in with a smile and promised he would come up with the same one....
N
Monday, February 9, 2009 6:10 PM CST
So we are awaiting our chinese take-out...
Today we had fun in Philadelphia. Luke was on a PEZ search...although he was slightly detered, he persevered and finally, he found the new Easter rubber duckie and the chocolate bunny. Triumph.
He even endured IKEA for me!
He is tired but the big news will be that his surgery has been delayed due to a baby who got stuck ahead of him.
So he will be going to the hospital about 10:00/10:30 am instead of 6am.
It will be tough to keep him away from food and him happy while "starving" but I am sure we packed it on today to prepare.
We hit the new Please Touch Museum also today and it was outstanding. What an enormous space and despite Luke being a "big kid" he had a great time!
More later..back to our family fun.
N
PS: Love you Isabella Love you Alexis Love you Italia
Sunday, February 8, 2009 8:58 AM CST
So today is a crazy day with last minute things to do so I will keep it brief.
6 years, 8 months and 23 days ago Luke was diagnosed with a brain tumor.
It was a crazy time, life flight to CHOP, emergency meetings with Dr. Sutton, a final weekend with family preparing for the unknown, 2 craniotomies, a double VP shunt placement, and a bandages kid who never lost his sense of humor or his love of family.
Seems like an eternity when I look at Luke now. Sure he is different in so many ways, but fortunately for that skilled surgeon, not the in the ways that matter most. Luke is still LUKE.
So, again on Tuesday I will entrust Luke's life and his delicate surgery to a very skilled surgeon Dr. Sutton. I will ask him again to go in and try to get the upper hand on a beast that has a strong will, and I will ask him again to bring my Luke out to us just as he went in...laughing, smiling, full of piss and vinegar and mostly full of life.
I will trust that all the prayers will safely carry us through next week, and carry the girls through a little unknown too.
Know that for all of you, every last one, we are so thankful.
This photo above is Luke at age 3. When his world turned up side down in a heart beat. When he thought if I had only taken the drive-through life would have remained the same...
But, just like then...we are survivors and we will make it through this next passage whatever that will be.
Till then...
N
Friday, February 6, 2009 6:43 AM CST
We should be coming home today...
Luke got the steroid Decadron last night with the stomach meds (steroids rip up your poor tummy) and tolerated it very well.
Also, he has a level 3 topical steroid for his arm.
This morning it is looking so much better....wow!!
Luke was up early again and the story Sylvia posted on his guestbook is so accurate and hysterical.
As you all know, Luke does not mince words. He can get mad in 2 seconds. It was just so abrupt and serious about how annoyed he was that all day no one had corrected his name.
Still today when I tell the story to the new nurse, it cracks me up. So rather than Cheryl, we decided to call her Heryl today. I guess that makes me Icole.
Too funny. Glad Luke is keeping his humor about him.
He is going to have eye strain from all the Playstation and DS he has played but the good news is that he pooped and so they can now test it and although we should be out of here anyway, it will make his stay after the PICU next week easier.
Thanks Sylvia for the Dunkin Donuts last night...if only I could get them to deliver!
Thanks to everyone for keeping our family going while Luke and I are stuck down here...I feel a little helpless in terms of Alexis & Bella and even Italia but I am grateful that they are in good hands and that there is a support structure keeping their lives and activities normal and moving a long!
More later when we break out of this joint...waiting for doctors to come in and check him out and give him the go ahead...hopefully by 10.
Until then, Sylvia left us 2 bags of chocolate which will keep us a little busy while we wait for breakfast!!
Nicole
Thursday, February 5, 2009 1:08 PM CST
UPDATE: 8 cups of coffee (((((((((((((((hahaah
10 specialists 5 cups of coffee 3 doses of antibiotic 10 scratching heads
we think it is an allergic reaction to the tegaderm from Friday's MRI exacerbated by an allergic reaction to something in a lotion Luke uses.
Of course this is a lotion he has used many times in the past but for whatever reason it seems that he has developed an allergy to something.
So we are going to start high dose topical steroid cream to jump start the correction of this and we hope to see improvement by tomorrow.
Things still seem on target for Tuesday's surgery. They do want him after surgery and recovery to see dermatology to determine what actually he is allergic to and therefore we can avoid it in other products.
I guess that is all good news.
Luke is tired. His mouth tastes gross from the antibiotic (which is IV but he tastes in his mouth...go figure) and grumpy from being up since 4 with many prods and pokes.
His bone age seems to have advanced too which may mean we need to increase his dose to stop the puberty/growth stuff...but we have tabled that till after surgery.
Thanks for all your contacts and thoughts...we just keep riding the wave!!
Nicole
Wednesday, February 4, 2009 8:32 PM CST
So wow, what a day this turned into.
After again getting my kids settled at Karen's (their new home away from home) for the snow delay, Luke and I headed to Philadelphia for his neurosurgery appt and blood work.
By noon, I knew teh day was going to be long and of course, the girls were taken care of today!
But our journey had just begun.
We left neurosurgery and headed to anesthesia to review for surgery on Tuesday and then had to head to the lab for blood work (both presurgery and for endocrine tomorrow).
I had voiced concern in neurosurgery about Luke's arm which ever since Friday's MRI was getting more rashy and swollen and Tuesday had ballooned, gotten hard and red. Long story...anyway, I also left a message for the oncology doc to be seen but of course, he was tied up in meetings and conference.
So, I persisted and went back up to neurosugery who paged Luke's team and set him up to be seen in clinic. So back down we went and waited.
One look by the nurses and they started to worry...so more doctors were called and phone calls to determine what was going on and how best to address it. Given the late hour at this point, none of the requested subspecialties had a free doc so they said our best bet was the Emergency Room.
Off we headed to the ER where we were evaluated and seen by a bunch of docs who finally decided to admit us to the oncology floor. So here we are....
My sisters drove and picked up Italia a few minutes ago fortunately...poor thing she is so out of whack.
Luke is doing well. All this stuff has made him a nervous nilly especially with the impending surgery. But, I told him we are in the right place and we will fix the problem.
Plastic surgery is suppose to come tomorrow and oncology is here of course. We are to see neuro-ophthalamology tomorrow as well as endocrine for regularly scheduled appointments which I guess makes this unexpected stay more palatable.
One year almost to the day, Luke was here last year for that freak lymph infection and now it appears he has a freak arm infection. What is with February. It use to be my favorite month for my sister's birthday, my father's birthday, my birthday, my godson's birthday, and my 2 sister in laws birthdays are all in this glorious month. Now, I am thinking it is an unlucky month...
Anyway, Luke is stuck in this room regardless because they have to monitor for this weird condition in your poop for 36 hours...hopefully we will be home well before that 36 hour window.
the plus for Luke is that at this late hour, only the 24 hour McDonalds was an option so he ate "great" as he would say. For my part, this lovely wrist band gets me free coffee at McDonalds which isn't much, but this current cup is rather good!
So, I will try to get some sleep. try to take another day as it comes and ride the crazy wave.
on the plus side, my father had his surgery today bright and early and was out and recovering before we made it to Philadelphia. He is doing well and I am sure that while they are watching Italia tomorrow for me that she will help distract any of his discomfort with her crazy wit and unstoppable personality.
Thanks again to everyone who has stepped right in to make everyone else's lives run...especially the girls who called tonight and had a sad tone to their voice...they don't like these unexpected surprises.
I freaked John out when I told him he had to pack lunches tomorrow, but then I remembered they were buying...so I guess he lucked out for sure!!
Keep the prayers coming...he really really appreciates them and they will carry us right into Tuesday.
Nicole
Tuesday, February 3, 2009 9:34 AM CST
Today was a wonderful blessing for Luke in the chapel at St. Elizabeth. His class was with him, his Kindergarten buddy class and his 7th grade buddy class.
Msgr. Muntone did a wonderful blessing for Luke which of course made me cry. Alexis & Isabella said Mom, why are you crying???
Good question I guess...it was happiness, it was elation, it was peace and it was fear all rolled into those tears which fell on my face.
Luke was glowing. He loved every part of it I know. Msgr. placed his hands on his head and told him it would all be good. That whenever he was feeling afraid or alone to think of everyone there this morning, praying for him, and waiting for him to come home.
Even his 7th grade buddy David did a blessing for Luke. Father Stan came over too to bless Luke. Father Stan makes rosary and had made a beautiful rosary for Luke. I told Father Stan before the service that at the Feast Day of St. John Neumann, the vicar had said how you can learn a lot about a priest by what they carry in his pocket.
Low and behold, guess what else was in Father Stan's pocket...a PEZ dispenser. Luke thought this was great and of course, it came with candy too!
From my end, I walked in the chapel with a text message from Sylvia that she was with us in thought and prayer at that moment, an email from Carolyn of the same, and 3 pillars of strength waiting to support me...Karen, Carol & Mary. Thank you all...
Amazingly, I cannot believe it is next week already. My head knows it but my heart is still living each day and enjoying them, as is Luke. He is still Luke, laughing, and talking out of place, and his sny adult humor. Yesterday he gave Chef Jim a run for his money again at Sagra.
But as I watched them all make pasta (the old fashion way!) and laugh and joke, again it reminds me of the peace and beauty of children. A very good friend of mine who lost her son not too long ago is starting a foundation to honor her son and to bring peace to families with cancer who struggle, much like our Pediatric Cancer Foundation LV.
She sent me this note: PEACE.... It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of these things and still be calm in your heart...
That is it...that is where I am. I did not get here alone, it is because of all the notes to Luke, all the messages, well wishes, the prayers, the service today, the friendship of all of you...you help me be peaceful at a crazy time. Thank you!
I headed up to 4th grade after the service and had a great time listening to the projects the kids had been working on and then they presented Luke with a poster card with all their pictures and notes from them...how amazing. I cannot wait to decorate his room with it!
Thank you all for bringing us peace and reminding us of the love of all. It is so inspiring...
Many of you may know that I am not one to ask for much in terms of others...much preferring to be on the giving end. But, we have been so blessed by so many...thank you all.
Nicole
Tuesday, January 27, 2009 1:41 PM CST
Enjoy some of the new pictures. Luke had a smashing time in Disney and we all relaxed. Scroll down and be patient...the video is cute!!!
My good friend asked me why we would drive (yes we drove this time!!) so far and only spend a couple of days in the parks. Truth is the true memories for me are made in every day ways.
We did explore the parks ... on our own schedule and without rush...but we also played tennis as a family, swam, shopped, mini golfed, ate the kitchen sink super ice cream sundae, did crafts at the community hall and soaked in the hot tub at 11 pm at night.
Memories too were made on the drive down as we followed the Appalacian Trail straight to Georgia, saw grasslands and wetlands along our journey, saw the Lincoln Memorial and the Washington Monument on our way home and saw our country in a different light. Plus all those punch-buggies with no punch backs are never visible from the air.
I think as parents we build our kids up to be the center of the universe. When they are ill, that role is even more profound. Sometimes that is a demonstrous role...but I find myself these days seeking out those things that bring that simple smile or that warm your heart or that just are.
The kids so much enjoyed hanging out with my friend Andrea's kids...Marshall and Allison. For the first time in a long time, strangers to each other, it just clicked. It was a beautiful sight that we take for granted all to often. Kids just being kids. Laughing, enjoying each other, finding commonality, learning from each other & sharing. Plus they got to say that bad word!!
Even my father's accident may have been blessing in disquise. Luke really stepped up as the other male on the trip to help pappy to the bathroom and take care of his needs in that regard. He never said No, I don't want to or hesitated to help out his Pappy.
Many times I swear my kids are the worse kids on the planet. Than I watch SuperNanny and I feel so much better. This time too, I really appreciated their own differences and uniqueness. Of course that is the same qualities that by hour 17 on the ride home were eeking the heck out of each other, but it also is the ones that during crisis, brings them together.
Last night our fish Gertrude died. We have been suspecting since Sunday that she was headed in that direction. If you know anything about Goldfish...and I swear I still don't...is that they are temperamental to change. Luke swears that she died because we left and had we not left, she would be fine.
I thought she looked ill when we returned. I cleaned the tank...that may have made it worse. Then I tried to treat the water...who knows.
Currently Ralph is doing well but last night, amidst tears like a river, we buried Gertrude. I don't know if Luke cried as much out of fear for himself, out of sorrow for Isabella's loss of Gertrude, or out of tiredness. But he cried...a lot. Isabella cried a lot. It almost made me cry.
Even the simplest creatures can forms bonds and can touch our heart. Even in the simplest actions or moments, emotions run high.
Sometimes as a parent it is hard to keep those in check because we are always putting on a front for our kids...the protector, the security, the make-everything all better.
As we head into our final week before Luke's surgery, he is feeling very anxious. He is talking about those fears though which is really good. And of course, we are full of those fears and more...for him and for us all for the future.
But, I feel still at peace. Peace in the decisions that we have made and the journey that lies ahead. Peace in knowing that even like a simple lowly goldfish, we are never alone. We are loved and cared for. We are cherished and blessed to be surrounded by so many with big hearts.
So thank you Andrea for carving out the entire day to spend with us and for David's fabulous coffee, and Marshall and Allison opening their hearts and lives immediately.
Thank you to everyone who prays and sends Luke well wishes and who has offered and taken upon yourselves to help us in so many ways, especially with the kids and especially Karen Hoff who always is only a phone call away!
Friday Luke has another MRI. This one is to prepare an MRI the surgeon will have to map Luke's brain in the OR. Of course it is another general anesthesia process on Friday. Pray for Luke's presurgical visit next Wednesday and his eye and endocrine appointments Thursday.
We plan to enjoy our family time next weekend before the big day and we will try to keep this page updated as much as possible as he moves forward.
Thanks to everyone who shares our journey. Again this month, many have lost their lives: Krista and Catie. And many who are battling uphill battles right now.
Love to all. Nicole
Sunday, January 25, 2009 5:53 PM CST
So we are back from fun in the sun and ready to face the beast head on.
We have a week off before pretesting next week and then the big day on February 10.
We had a lot of fun in Disney although Pappy had a rough start. He fell on Day One by missing a last step and tore something on his quadracep muscle which left him in a leg brace and crutches and wheel chair.
But we managed!
Mom got to visit her great friend Andrea and after 6 1/2 years of best friendship they finally met in person...almost puts online dating to a new level!
The kids had a great time playing with Marshall and Allison and they hardly wanted to leave...neither did I!
Disney brought a few days of unexpected cold weather but we still fit in lots of swimming, parks, tennis, shopping and more!
I will post pictures soon as I need to recover from the 22 hour ride...thanks Aunt Pam for keeping me awake the whole way!
The kids had a few break downs with all their head strong personalities that is hard to not happen.
But, the next few weeks are surreal for us and a little overwhelming for John & I as we face again the unexpected with Luke.
Extra prayers to St. John Neumann and for not only Luke to push through the surgery but for Alexis & Isabella as they too are entering uncharted territory.
best Nicole
Thursday, January 15, 2009 5:59 PM CST
Surgery is set for 2/10
As you can see from the great picture above, the tumor is large. It moves all the way up to the corpus colloseum and that makes a better approach.
The surgeon is optomistic that he can go in and do some good, albeit with risks along the way.
Luke was fine for the conversation today although as Dr. Sutton was talking about the large incision from ear to ear, peeling the scalp back and removing the top of his skull like the lid off a teapot, he stopped and said Luke, are you oK? Luke said yes, it is just weird like a teapot.
He was great today and we are somewhere between fear and peace.
Now we are heading for sun...and hopefully more peace.
Keep your prayers coming. WE really are needing them now!!
N
Tuesday, January 13, 2009 9:36 PM CST
Okay stop...I am going to pee myself or have a nervous breakdown. I am not having nor have I had a baby. SOrry for the confusion...Thanks Katie!!
My nephew had a baby girl, Sophia.
I am just the proud ultra cool super fly Great Aunt Nicole.
Tuesday, January 6, 2009 2:21 PM CST
CHECK OUT THIS WEB-Video...I made all my kids watch it envisioning it was me...
I couldn't have said it better.
Now Luke is sulking...
Monday, January 5, 2009 10:16 AM CST
Today is the Feast Day of St. John Neumann. Why is that important?
Well, yesterday Luke & I had the pleasure of visiting the shrine of St. John Neumann in Philadelphia. We attended St. Peter's Cathedral for the healing mass and it was amazing.
The Philadelphia Boys Choir sang, the church was amazingly decorated for the holidays, there was processions and many priests from the Redemptorist order. It was moving. It was peaceful. They spoke of a man, an average man, like you or I. They spoke of a man who believed in community, in love, in the basics. They spoke of a man who touched others not by fancy miracles or levitations, but by being average and simple and like everyone else. He opened his home to strangers. He opened his heart to God and to those in need. He opened his life to teach and to help children and those less fortunate.
He is like you or I. We can do the same. We can open our hearts and lives to those less fortunate too, and we do. Each day we take care of the sick, unfortunately in our own home for many. Each day we love and we are open to receiving love. Each day we try, to be and do the best we can.
The Priest who spoke was eloquent. It wasn't full of pomp or circumstance, but love and compassion for all.
After the service, LUke and I headed to the lower sanctuary to see the body again (pretty neat) and to have Luke blessed. But before we got out of the church, the Vicar of the Redemptorists was stopped by Coach Bontempo and introduced to Luke. Luke was blessed 2x by the Vicar and then a 3rd time downstairs.
Luke feels quite holy. More importantly, I feel at peace. We met an amazing young woman named Katie and her mom. I do not know her whole story, but she had a blood disorder as a child and is now fully healed. She credits this to St. John Neumann. She invited us to join this day.
Now, regardless of your religious persuasion, the message is simple for me. Love conquers all. Sometimes those words are taken for granted. But, as I sat in a beautiful place, listening to beautiful music and words spoken like in song it occurred to me that our lives are measured in part by the love we give and the love we receive. The days are not as important, but the use of those days, the use of that time.
True love is not work. It is not a conscious thought many times. I sat next to Coach and Mrs. Bontempo and I thought of the love they have given so freely to us...to Luke... to the girls...to our entire family. And not alone, they have invited everyone they know to do the same. Their children have followed their example and also loved...given...and gotten for us from others.
The path never ends. It is like that movie Pay it Forward. If you give, it just grows.
Now all of this doesn't change cancer, it doesn't take away tumors and pain, and grief and loss and all that craziness. But for me, it helps. It makes our lives bigger. Richer. More powerful. To think that we can touch others. We can move others to be better. We can empower others for greater things. We can inspire others to be better than they are...all through love. Love of neighbor, love of self, love of God.
And, the choices we make each day, affect others. So if you are annoying to some one ...stop it. If you bring grief or strife to someone else, stop it.
Perhaps, when we focus on the love. The power of that love. The way our lives, and our death impact others, we can find peace.
They said that when St. John Neumann was found he had 4 things in his pocket. They say you can tell a lot about someone by what is in their pocket. He had a rosary, a key, a package receipt, and mints. The rosary is obvious, the key was to his home although unecessary because he kept is always open, the package receipt was for the package he had just personally mailed to another church in need from where he was walking when he collapsed and died at age 49, and the mints...those he kept to give to the chidlren he loved.
So I guess the question is, what is in your pocket?
Friday is the MRI. I am anxious. Monday are the results. Luke has been doing well and feeling well. He is surrounded by love, by friends and by Lots and Lots of PEZ. Right now, we are at peace.
Love N
Wednesday, December 24, 2008 8:43 AM CST
I wish I could say as I type here on XMas Eve Day everything is perfect. But it never is.
Luke is so off today. He is crying, screaming, demanding. Then he cowers and barely audibly utters, where am I, I don't feel good.
It is like watching a mental patient ...
2 seconds later he is screaming at the top of his lungs, get in your freakin room and get out of here.
I thought I was getting depressed not wanting to do anything anymore. But I am just lost. The emotions of your children are carried and shouldered by you the mom, and sometimes, the sheer amount of emotions you carry is too much. That is how I feel.
The roller coaster has gotten bumpy and at a time of the year when I crave peace, and home and rest, it is anything but.
I avoid the traffic, the malls, the stores. I favor online and curled up by the fire. But, my home can be on fire some days. Today is one of them.
THe last weeks haven't been all bad. Luke had a fabulous birthday...you remember it started at Gwynedd and lasted for a good week until his real 12/10 day. He celebrated with both sides of the family which he loves. He got special visits and dinner from our wonderful friends the Patriarcos and the Pituchs. He got a great book on the Extreme Survival Guide to which he read what to do if you have to poop in the woods 50x time so now he knows it by heart. It still makes him laugh when you find the right magic spot to bury your treasure, or you can use a pine cone or rock to wipe your butt. Not the kind of rock for your rock garden though...and he laughs.
Those days I treasure because they seem too few and far in between. I don't know if it is the age, the season, the fear or the damn tumor. But it is exhausting to witness and again helpless to change.
The girls were pampered at Sweet & Sassy care of a special lady named Tracey. What a treat. Alexis was in heaven and they not only got pedicures and manicures but facials and updoos. Talk about super! I will post pictures on their websites http://76.163.78.203/blog.cfm?postID=40 Isabella http://www.babiesonline.com/babies/r/rosierose/ Alexis
shortly. Tonight we are heading to Mass and then to cousin Charlie's for dinner. I look forward to these special family times and memories.
Each year I write a book. The Roncos 12 years of Christmas. It is really my year in review. I enjoy the reflection it brings me and the forced way to reflect on all the blessings that we take for granted. Since this year I ran out of time to prepare my Christmas letter to send with my cards, I will provide the link to review my book. Enjoy.
Already I have had to add an Appendix. We had another birth on 12/23/08 which was not expected until January. Sophia Ann was born into the world via C-Section at 6 pounds 5 ounces and 17 inches long. She is a peanut for sure. Beautiful. Lips like my nephew and eyes like her mother. We are excited to watch her grow up too.
Here is the link: http://www.mypublisher.com/bookshelf/bookviewer.py?d=tq>y-cppl`je>35:7427
So the days are moving along. Perhaps I am subconsciously dreading the new year for fears of questions I have no answers to or decisions I feel ill-equipped to make. I try to pretend January is years away. Until then, I will try...try to smile and try to keep us all sane here. Try to enjoy the upcoming days and try to keep Luke in a happy place. I so want those days to be bountiful and the unhappiness he feels to disappear.
Thank you all for all you have done. I spent 12 hours last Friday cataloging his impressive PEZ collection and am almost done. Perhaps I will finish today.
He is organized and they are all documented. I couldn't believe how many super ones he got in his Gwynedd haul...very special.
Oh, I almost forgot.
We were treated to another special birthday surprise. Luke wanted to go to the PEZ Museum in Easton PA before they closed for good. A coworker of John's knew the owner and provided me his phone number. I called and arranged to meet him last week at the Museum with all the kids in tow. Luke has been there a thousand times but this was a special tour...so much in the museum we never realized. I love the KISS Fantasy PEZ!!
Luke found ones to buy in the store that he did not have of course. The ownwer gave him more, gave the girls some, and was a true PEZ informant to us all. We learned a ton and then Luke found that he actually had the old Mickey PEZ with the removeable nose which was also used as Popeye's pipe...it was super.
Thank you Deb Lehr for arranging it and thank you to Tim Croyle for the tour.
The museum may be going on sale on ebay...don't tell Luke though...he will want to buy it!!
Nicole
Thursday, December 4, 2008 5:32 AM CST
UPDATE: I recently came upon this quote: "Courage is the discovery that you may not win, and trying when you know you can lose."
Truthfully, my dilemma lately is not in comprehending Luke's tumor, or its growth, or devastation, or impending fear of death or devastation. My dilemma is in knowing what to do. How do I decide the appropriate treatment? How do I risk everything? How do I find the courage...I guess in knowing that without trying, I lose anyway.
That is the dilemma of brain tumors. Parenting has no guidebook...certainly parenting a brain tumor child has no guidebook. And, folks, parenting a brain tumor child who is not responding to treatment or who is declining, advancing, etc...has no guidebook.
I know deep in my heart regardless of any outcome, we fought and are fighting like hell. But, truth is the courage is part of the journey. The courage is fighting against all obstacles, against an unknown opponent with unknown resources and tricks. Against a beast that as fierce as warriors have lost their battle too. The courage is despite all of this...moving forward with conviction in your movement.
I use to pray for wisdom to make the right decisions...and I don't know if I always have. These days I think I will be praying for courage too...
It really doesn't tell the whole story but the whole story is really almost unbelievable.
Luke's Soccer Team, Gwynedd Mercy Men's Soccer Team is not only full of some really amazing, mature, compassionate young men, but also headed by a coach who has a heart of gold.
WIth Luke's impending birthday, Coach coordinated a flawless fabulous birthday dream for Luke, one even Luke couldn't have imagined or dreamed about.
And it was a family event for sure... Knowing Luke's obsession with PEZ Coach's daughter Laura sent the word out through many avenues about Luke and his PEZ collection and collected over 500 PEZ dispensers. His son Dave also helped coordinate and collect and helped Mom put the package together in an amazing feat and display. But that was only the beginning.
We attended Gwynedd's first Gwynedd Maddness Pep Rally last night after enjoying dinner in the cafeteria with the team (yes, those guys eat GREAT) where even there we were treated like royalty by the kitchen staff!
Then we hung out with the team a bit in the lounge area before heading down to the gym for the Rally.
Fabulous fun entertainment with the cheerleaders, dance team, faculty lay up shots, line up for the men and women's basketball teams and finally the introduction of the women's soccer team and then the men's soccer team.
Of course Luke was introduced with his team and ran out onto the court to low five them all and participate in the MEET A GRIFFIN with Coach. This is where Coach interviews a new team mate to learn more about them as a person.
Of course the topic immediately came back to PEZ (Luke's favorite topic). Coach told him about the 500 PEZ dispensers...Luke's mouth started to drool. Then he told him that he had to earn it...by landing the ball in the basket with one throw.
Nervousness came across Luke...then he saw the tallest players from the Bball team standing by the next...he ran over, they scooped him up (not a small feet for he weighs over 90 these days!) and he very easily and successfully dunked that ball in the basket...then...
UTOPIA... as they lowered him down and the teams moved to the side, he saw the most gigantic pile and display of PEZ, I think he has seen in quite some time outside of a convention...all for him ...with thousands of cards for his birthday...with signed shirt from St. Joseph's and a signed jersey from a pro soccer team and wow, I cannot even remember it all...we are still digesting here.
Oh yes, and the link above...did I mention that Luke had CHannel 6 Action News show up to interview him. Funny though none of us really knew what was in store so when they interviewed him, he could have never imagined his evening as it unfolded.
He finally said to me Mom, I think I need to sit down I feel faint...it was amazing.
Then the cake...the size of Texas...and the entire gym all sang Happy Birthday to my little man as he ran a victory lap around the gym,hi-fiving all the way.
How do you say thank you for all of that...
With his mouth full of cake I asked Luke what he thought of his birthday so far...Mom, this was the Best Day of My Life EVER.
Enough said... pictures coming soon....
Tuesday, December 2, 2008 4:19 PM CST
So the days are moving right along and Luke is still feeling really good.
Yesterday he did cry over broccoli, and then get himself so upset he got nauseous, but really that is just his normal self.
His 10th birthday is next week and wow, time has flown. I remember my pregnancy, delivery watching the Queen Rock-umentry...and all the amazing moments that followed.
I remember how by the time he was 12 months old he had all his 20 primary teeth. He potty trained by 18 months and spoke in sentences around the same age.
He loved to perform and sing and dance. He loved to tell jokes and be silly...he still does!
He had food allergies for a while and when I went into labor with Alexis I had everything in my whole house labeled so my sisters would not accidently give him something he couldn't have...talk about overprotective freak mother!
I remember he cute little squeaky voice and of course when he walked into the bank door and cut his eye and of course thought the whole tumor thing was because we did not go through the drive-in.
I remember our time in Boston...just the 2 of us and how he monitored the amount of coffee I had every week like a parent, and how he always knew that I snuck some while he was a sleep in protons. Silly boy.
I remember Luke's caterpillar he got on the day he was born from his Godmother and has carried with him every day since. One day at the Great Allentown Fair he lost it and I searched for 3 days to find a new one, finally found one, and then my sister found his old one at the fair (a nice lady kept it at her stand). He still loves that old one...with the antenna missing, the eyes coming off and the legs that have been sewed on one too many times. But I take my time washing it these days...I love the smell he leaves on it. That Luke smell.
I remember when Luke met Donovan McNabb at age 4 and how frightened he was an Donovan was so big and had these large red shoulder pads on ...and he walked over to Luke saw his name tag and said "Luke, I am your father...". Everyone cracked up and it made the 6:00 o'clock news. Silly.
I remember when Luke was in love with Tarzan and Alexis and him stripped down to their undies and jumped all over the furniture singing along with the Tarzan song on the CD. Hysterical!
I remember when Luke did want to be hugged and kissed anymore and how it broke my heart. But I remember last week too when I snuck in a hug and kiss at bed time and he let me for real...I smiled all the way out of his room.
I remember how smart Luke is sometimes but how tough that is when you still don't understand the big world. I know that he worries a lot...about which lane I drive in, how fast others are going, why "stupid idiots" are bombing people and the like. Sometimes I wish he was still 3 and his only care was when the Wiggles were coming on.
I remember how LUke use to call Alexis "Leahy Roe" and now he calls her stupid idiot.
I call Luke the United States...always wanting to tell people what to do, always thinking his way is the right way and he is the only smart one. These days Alexis is Iraq and Isabella is Afganistan. Both have internal turmoil and both fight with each other over dumb stuff...while the US tells them all what to do and how to do it. They think I am crazy but that is History 101 at the Ronco house.
So today, one week shy of his 10th birthday...I feel a little older myself. I feel a little in awe at the magic that has been 10 years and the crazy roller coaster of course I never dreamed I would be riding. I am thankful for them all...the good and bad. I am thankful every day of Luke's life...and his sisters too. For my amazing husband that puts up with me when most would not and for our friends and family that help us in so many ways through each day and each up and down.
Now, I must go separate Iraq & Afganistan as they are both trying to bring Italy into their corner of the world while the US is telling them all what to do...
Nicole
Monday, November 24, 2008 12:54 AM CST
So the news is still not good. Boston is in agreement with Philadelphia that the tumor is growing and has had progression to the posterior section to the largest degree.
The PET Scan has been cancelled because at this point, what difference will that make in really moving forward. We are setting up another MRI for early January and then will decide on surgery, chemo, or both.
I feel ill.
Luke is scared. He said he really is worried he will die. I told him I am scared too but he is feeling good and right now, we are going to enjoy the holidays and his birthday and then move forward. We are fighters I told him and he has already beaten the odds once!
Interestingly, John & I just returned from Sweden after a few days in the scandinavian air...although it did not change the decisions which lie ahead, I had the pleasure of meeting a young man from....HOLLAND.
Wow, I said, I have lived in Holland for a bit myself (HAHAHA)...I told him of the story of Life in Holland as told by Emily Pearle Kingsley. I asked him if tulips and windmills and Rembrandts were the best part of Holland...I really expected him to tell me that Amsterdam was the best but he said no. Actually I do not like Amsterdam at all.
Holland is beautiful and the country and the small towns are very nice he said. But the best part of Holland is not the towns or the country. The best part of HOlland is the people. They look out for each other, they respect each other, they are kind and generous to one another. I laughed...albeit with a tear in my eye.
For goodness sake I thought...of course it is the people. After all, in my pseudo Holland...everyone knows your name. Everyone shares your joy and your sorrow. Everyone understands without a word. In my pseudo Holland, they can hug you across the miles and share your tears and your fears. They can carry your burden a little bit for you and break a little in their heart too for your pain. In my pseudo Holland...in brain tumor world...we all are one. The people of my pseudo Holland are the best part of Holland too. Sometimes I enjoy the country in Holland as well, but I always come back to the people. WHen I need a lift or to vent or to shoulder someone else...Holland is the place.
Today I sent him pictures of our team adventure in Sweden. I am sure he will enjoy reminiscing about the one evening we all cooked together...but little does he know that the 5 minute conversation was more important. I asked him to send me pictures of his favorite parts of Holland his homeland...I will post what I receive.
In the meantime, I have Thanksgiving to plan. And a lot of things to be thankful for...for over the last 6 years since that dreadful day May 15 2002 alot of amazing things have happened. Friends and memories. Births and birthdays. Travels and adventures. The simple. The benign. Most relished. Some rushed through too fast.
Luke too has had a lifetime in his short 10 years. A lifetime he wouldn't trade too quickly I am sure. And, God willing...a lifetime yet to enjoy!
More later. Happy Turkey Day to you all...
Nicole
Friday, November 14, 2008 10:10 AM CST
Despite the arrival of his films on Monday, they did not get properly directed and he missed Brain Tumor Clinic review this week in Boston.
He is on the schedule for next week so we will wait patiently and enjoy the calm...and the Nordic Air.
Thanks for all your messages...Luke loves it!
Friday, November 7, 2008 9:36 AM CST
I hate to write these words more than you will ever know...but Luke's latest MRI seems to show progression / recurrence of his tumor.
This is especially evident to the rear of the tumor and on top of the tumor where it appears to have grown 8mm x 4mm larger.
Since his tumor is so complex and there are so many cysts in and around the tumor, it makes a concise reading difficult and a concise understanding of what is really happening more difficult.
That being said his doctor does not feel that we need to do something tomorrow. However, we are proceeding to a PET Scan and another MRI as well as consult with Boston about his latest scan to get as much information as we can before deciding a new path.
We are hopeful of course, that whatever we chose will be successful for Luke. He is still feeling great and really shows no outward signs of any change or discomfort.
We ask for extra prayers of guidance so we can make good decisions. At this point there is no roadmap and I feel again inadequate to be making these decisions.
Fortunately, we are not deciding anything till after January 1 so we can enjoy Thanksgiving, Luke's 12/10 birthday (entering double digits...the big 10), and the holidays before our life potentially goes crazy again.
AHHHHHHH...I freakin' hate brain tumors!! Nicole
Friday, October 10, 2008 2:43 PM CDT
so, we traveled last night up to MAINE and here we are in lovely Casco enjoying the beautiful trees and sunshine. the colors are amazing.
The kids are already settling into Camp and some familiar faces as other families begin to arrive.
Aunt Pam is with us and we have given her the preliminary tour. Tonight is the bonfire and we are excited to roast some marshmallows. YUMMMY!
You would think that I would be tired of driving as I feel that is all I have done lately. But Long Beach Island last weekend was super wonderful too. THe ocean is the best in mid-fall when it is just warm enough to enjoy but not crowded and too hot. It was super relaxing and peaceful.
The chowder was very good too and we picked the winning Red Chowder and the 1st runner up White chowder.
Otherwise, we have been trying to keep busy but resting a little since the last few months were a little crazy. Luke has another MRI shortly and if I keep busy I think of that less.
Isabella turns six on Sunday -- Who can believe it?
Ok we will write more later -- off to enjoy the fall air in Maine!
N
Monday, September 22, 2008 5:59 AM CDT
It is hard to beleive it is almost October. The busy days over the last few months have really made the time fly by.
Isabella is looking forward to turning 6 next month and we are hoping to get away for a long weekend soon.
The kids cousin gets married on Saturday and that should be a lot of fun.
Not surprising the fighting hasn't stopped much but I guess that is really more normal than not.
Luke still loves 4th grade and actually had enough money left last week to buy something at Mrs. B's end of week auction. An Eagles football of course.
This weekend he watched the game and we tried to clean out his stockpiles of junk which he accumulates in all his drawers. Forget clothing -- he is stocked with stuff.
He is still learning Braille and now is back with his school year teacher and found a great taks to keep his interest - converting Level 1 book words into contractions. Personally, I am still trying to get through my Braille course and I can't even begin to understand the contraction part -- oh to be young.
Luke also is back working 1x per week with his orientation and mobility teacher and so far so good.
Well off to get them going for school --
Monday, September 8, 2008 5:53 AM CDT
School is finally a week underway and the first week went well.
All 3 kiddies came home day one saying they love school -- how often do you hear that! I guess they really were ready to go back.
Luke loves 4th grade; he thinks the day goes by so fast and he loves Mrs. B.
Isabella has a new teacher this year but so far she thinks she is very nice and is learning a lot in "Mathematics"
Alexis is also adjusting nicely to school in 3rd grade and feels very organized already!
Alexis is playing fall softball and that has her a little busy and then of course we are trying to fit in our regular visits to the Gwynedd Mercy soccer. They have not had a great start to the season, but we hope to bring them some new luck soon.
Luke's behavior has been a little more eratic these days. The impulse of the hypothalamus combined with Luke's headstrong personality really can test an individual at times. Plus, the girls have a battle of wits with Luke and he plays them against each other. Some days it is all I can do not to down a bottle of Zanax! (Joking -- no intervention necessary!!!)
Each day I start a new with my friend Mr. Coffee.
September is Pediatric Cancer Awareness Month. Did you know that 13,000 children are diagnosed in this country with cancer? Did you know that Childhood cancers are the #1 disease killer of children - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).
Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).
September 13, 2008 will now be recognized as “National Childhood Cancer Awareness Day” as a result of a Senate resolution introduced by U.S. Senators Wayne Allard (R-Colo.) and Hillary Rodham Clinton (D-NY). Wear your gold ribbons this month. Talk about pediatric cancer and raise consciousness. Research is great but not enough -- we need funding for quality of life and survivorship programming.
And, if you are in the Allentown area on Friday with nothing to do -- we are hosting a KIDSAPALOOZA Band Rally for Childhood Cancer at Grouse Hall, 6-11 pm.
5 local bands are donating their time and amazing talents
Tickets include food -- www.pcflv.org (Kidsapalooza)
Later all - Nicole
PS: Extra prayers for GMC Soccer's game tomorrow! Go Boys!
Monday, August 25, 2008 3:39 PM CDT
SUPERCALIFRAGOLISTICEXPEALIDOCIOUS
It was amazing.
Luke has been "adopted" through Friends of Jaclyn into the Gwynned Mercy Men's Soccer Team and what a team they are. We are so thankful and amazed.
They treated Luke like a king from the minute they met him and showed him with love, attention and lots and lots of meet and greets. Alexis, ISabella and Italia got their fair share as well and I think Italia is in love with one of them...
Luke crashed 5 minutes after we left that night but what an exciting time.
We cannot wait to come back and cheer them on and just hang out. What a great group! Their website: http://athletics.gmc.edu/msoccer/
Coach Bontempo is oustanding and we know why he has such a great crew under him!
The tennis coach came to meet Alexis and provide new rackets to Luke and her -- she was tickled. She even met some of the girls' tennis team but was a little too shy to hang with them the first day.
Isabella tried out all the excercise equipment in the Griffin's training facility and we all got to dine in the cafeteria.
I was tired when I returned home but it was a great experience.
Enjoy the pictures!
Luke was in the ER Saturday night for what might be a hiatal hernia. He was having a bulging and a lot of pain but after a few hours in the ER he felt better and they really could not isolate if it was his shunt or something else. Guess we will keep an eye on it!
Luke's MRI had increase in those crazy cysts again but he is feeling rather well. Still ongoing intermittent headaches and stomach issues, they seem of course to be worse when he is in his grouchy grandpop mood but we hope that getting into a routine and being around his new "big brothers" will help that too!
Our Kick for Kancer soccer camp was this weekend and it was awesome. 85 folks helped us have a smashing successful day and we were exhausted by the end, but thrilled. Our outdoor chemo circus is on Wednesday and I am tiredly looking forward to that as well.
Stay well -- more soon!!
CHECK OUT THE PICTURES!!
Thursday, July 17, 2008 11:51 AM CDT
Finally -- I can write.
Luke has his MRI on Tuesday and the results are in today.
Stable with enlargment on one anterior cyst. Basically good news but those damn cysts just will not cooperate!
He gained 4 pounds in the last 3 months and grew only 1/2 inch so that could be problematic but we are not going to stress it, just use it as motivation to try to keep him on track (I say that but for lunch at the hospital he had fries and a vege burger -- guess which he finished all of!)
Any who -- we returne from Camp Sunshine last week where we had a wonderful time. For the first year all the kids were in their own groups with no overlap. THis may not happen again for like 4 years -- leap thing!
They all had fun reconnecting, trying new stuff and believe it or not John & I stole an afternoon ourselves and went kayaking.
Jan and I caught up each morning over coffee but that hour flew and I feel like I need a week with her to just catch up! Alexis participated in a sibling group and I think she felt a little empowered to have something that was all her own.
There was too much good dessert at camp but we got to connect with new families, and reconnect with oldies but goodies. Jessica came to visit with us which was awesome although I cut out early because of the dreaded migraine --
Luke did not make the sleep out all night (too overwhelming he said) but he did stay up until that point which is a start.
WE cannot believe summer is almost over. WE are looking forward to some more time in the Poconos where Alexis is taking tennis lessons and hopefully a better fishing day than we had before.
Everyone is getting so big -- growing up, I still feel like I am 23 except for the age spots developing on my hands and legs, the gray hairs that keep appearing, and now my knee is so sore it hurts to go up and down stairs. Did I mention the grays that keep appearing? YIKES.
Yes time is passing a little too fast. When I find myself overwhelmed with the mothering, the cleaning, the cooking, the cancer, my life...I remember that these are the memories I will one day look back on and smile. I hope when I look back I can remember the days I didn't scream at the kids for fighting and driving me nuts, but I guess that is par for course.
I hope one day too they look back and think about the great childhood they shared with each other and the amazing people they met along the way.
Until them, I will keep drinking my coffee...getting no sleep...being a neurotic control freak with 4 busy kids who make her nuts!
Love to you all Nicole
Tuesday, June 24, 2008 1:05 PM CDT
School is officialy over. The first week of summer break is behind us. Luke got in a little fishing already. He caught 2 boats, one stroller and the back of my pants.
I think he needs a little help in the casting area!
Yesterday we received heart-breaking news that one of his buddies passed away from neuroblastoma. I am numb with saddness.
Tomorrow is one of my best buds anniversary - Jeff & Jan - and next week is the ISPNO conference on pediatric neuro-oncology. The emotions are so all over any more it is hard to know if I am coming or going.
Some days I feel so inspired to move forward to help create avenues for quality of life for families. I truly believe in its power, the importance of community, celebrating the small triumphs, but lately the loss has been overpowering.
Luke is committed to his PEZ protecting earth's zoos and we have come up with a lot of projects to work on if we can steal a few moments.
More later - love to all. N
Sunday, June 1, 2008 8:46 PM CDT
So much to do so little time for simple writing.
We have been really busy. We celebrated Luke's 6 year anniversary of survivorship -- my 3 year old has become a warrior. Plus, the end of the school year has brought lots of projects, our First Meeting of the Round Table of the Knights of the Magical Moon brought new assignments and Lauren's First and Goal today brought more fun.
I wish I could properly recount everything that has been going on including the behavioral ups and downs, the series of daily headaches that Luke was experiencing but now seem to have subsided and we think were allergy related, another round of strep throat, Lauren's First and Goal (www.laurensfirstandgoal.org), numerous fights with our sisters, rained out baseball games, finally a baseball game, the Gala in NYC, PEZ shopping in NYC, not having a breakdown during the visit to American Girl NYC, school pictures and more.
But I will share briefly about the First Meeting of the Round Table of the Magical Moon. Awesome. Inspiring. Amazing. I am so proud of Donna and the 12 Knights she has assembled. She has such plans and hope for them.
Did you ever fight a Lion? How about a dragon? What about cancer? During the FIrst Meeting of the Round Table of the Knight of the Magical Moon each knight received their commision or began work on their commision to change the earth.
Now, I have a request for each of you if you can help. This is not about Luke, but rather about the purpose of the Magical Moon and all of us as inhabitants of earth. The goal of the knights is to help clean up the earth, to make it healthier, greener, safer and happier. One of the knights is working with water companies, another with solar energy.
Luke is the Collection Knight and we all know he loves to collect PEZ. He is undertaking a mission to Protect Earth's Zoos (PEZ). We would like to present our mission at the upcoming Earth Day at the Magical Moon in August and have with us zoo animals created out of recyclable products. Can you envision a giraffe from an old water bottle? What about an alligator from an egg carton?
If we can create 25-50 creations to sell at the Earth Day in August, Luke believes that we can have enough start up money to lauch the PEZ campaign and work to help our earth's zoos. So make your lions and tigers and bears -- together we can all help clean up the earth, save the animals and hopefully help stop cancer too!
Can you help us?
I hope to be more regular writing. Camp Sunshine is around the corner, Isabella is graduating Kindergarten, Alexis had her First Holy Communion -- there is never a rest for the weary. Till then my friends...
Tuesday, April 15, 2008 9:45 AM CDT
UPDATE: Luke's MRI is stable with the exception of one cyst on the right back temporal that seems much larger. We are unsure if this explains anything or any behaviors but we hope for some more info from Boston this week. We are having slight flight problems -- pray this all works out and we get to Boston as planned. ********************* So wow -- i have taken a leave of writing but not for lack of stuff happening, rather for too much.
Forgetting work and all the other normal things that come with having a family of 4 under the age of 10, we have also had some unfortunate issues with Luke's behavior that then have carried over to the girl' behavior.
I am hoping that we can try to integrate some new techniques to help because as hard as it is to understand, some things he really cannot control. The tumor controls the hypothalamus and therefore his impulses.
Food is a big issue again. Outbursts and disrespect.
I feel bad for Luke truly because I think sometimes he is his own worse enemy. He misses out on the simple joys of childhood because he is a worrier, and obsessed with food and other like vices. Any assertion by me to control those things or his resulting behavior sometimes meet with further disdain.
Lucikly, I have a lot of people who are trying to help us including his awesome doctors in Boston. We are heading up there next week.
We also are trying to work out whatever problems might be workable outside of the tumor and then hopefully that will alleviate some of the sibling issues as well.
Of course, Luke does still find comfort and joy in his PEZ, which has become a little help as we introduced a new poker chip reward system that can earn him PEZ. And a special thanks to Toni for bringing him some from her recent trip to Germany.
All and all I also have noticed some avoidance of his homework which appears to be not for unwillingness as more avoidance due to difficulty. Luke has always been blessed with things being relatively easy for him in school. Now work is more challenging and some items, math word problems, science paragraphs, are becoming more involved and therefore requiring more steps in working out the process. He feels frustrated and therefore avoids it. I am unsure if this is a new decline cognitively or just a realization that we are entering areas that are becoming more challenging. I hope we can identify these soon and develop whatever necessary skills we need to overcome it.
I recently learned about Brain Steps which is relatively new to our area and hope this too may help us through our journey.
A tapestry of sorts has been woven since Luke was diagnosed almost 6 years ago. Events, conditions, people, experiences have all intricately become part of the true fabric of our lives.
Sometimes it is easy to find comfort in those experiences and sometimes like recently it is easy to find frustration. For the first time in a long time (I am a perfectionist control freak after all) I feel at a real loss how to help Luke help himself and how to parent without controlling and how to maintain a semblance of order for everyone else while realizing Luke's limitations and ability to control his own impulses. For the first time I am afraid for the future if this worsens, as my biggest fear is not for myself but for Luke. For my mission has always been to have him enjoy every day. Lately however, I fear that has not been the case.
Even more so is that I think for Luke it has almost become a habit to wake up in a bad funk rather than see what the day offers and because of that it is less a response and more a programming that needs to be corrected.
So I appreciate your support. Your Prayers. Your thoughts as we press onward with new challenges to overcome.
Today I am at the hospital for Luke's MRI. My mind wonders to what ifs and oh knows but common sense prevails -- we will deal with whatever it is when we know and what we know.
Results come in on Thursday -- extra prayers please. And we visit Boston for our yearly evaluation next week.
Stay tuned... PS: Luke and I participated in a video for our local Tempo show and attached is the link. They did a nice job! Luke will crack you up! He is too funny. http://www.wlvt.org/TEMPO/Videopages/tempo538.htm
Love Nicole
Tuesday, February 12, 2008 9:17 AM CST
Today we fly the coop -- we have been inpatient at CHOP since Friday 2/8 and today amidst snow and ice we are leaving. So Luke had an infection of his lymph nodes in his neck which led to either a scarlet fever rash or an aggravation of his excema.
At any rate, after lots of antibiotics and scripts for home, we are heading out.
more to follow and a huge summary of our Disney trip with pictures I promise.
The weather there was awesome; 88 degrees most days. Sweet!!
More later Nicole
Friday, January 25, 2008 2:31 PM CST
STABLE
Seems we may have to fine tune the Lupron, but otherwise Luke seems to be doing GREAT.
We are thrilled and moving forward...
MOre later Nicole
Wednesday, January 16, 2008 8:25 PM CST
Well this is Luke getting ready to blow out his 9th birthday candles; hard to believe so much time has passed. Am I really getting older...
The MRI is finally this Friday, in the afternoon, with General Anesthesia. Hopefully this will not become an every time event, but we will evaluate after this. I am just happy to get it scheduled and hopefully get good results before we head for our vacation to Disney in February.
This week is exams and we have been busy trying to squeeze in some studying amidst all the other stuff my kids have on their calendars or have to do in order to avoid the work they are suppose to do...
So, I am exhausted already...which is quite early for me. I will make this short and sweet and update hopefully with good news next week after we meet with Luke's doctors.
On the plus, he has been feeling well except for the 2 days this week he complained his stomach hurt and the fall he took at school yesterday when he tripped over a chair he did not see and crashed chin first into a book case. Luckily, he did not require stitches and it is under his chin, plus the discomfort keeps him from opening his mouth too much these days!
Calgon...take me away! Nicole
Sunday, December 30, 2007 1:38 PM CST
So today Luke is watching the Eagles beat the Bills. He gave me a hard time as I forced him to wear layers and wear a hat, scarf and gloves. Come on Mom, I am going to be sweating.
No news on the MRI front. The hospital pissed me off because they made me drive to KofP and then did not perform the MRI because they wanted him at the main hospital due to tonsil issues. Funny they never mentioned that the day before when they confirmed the appt.
Anyway, so we are having a ASAP appt with the ENT and then hopefully the MRI, or we will have to reschedule with general anesthesia. Seems Luke's tonsils seem to be accluding his ability to breath under conscious sedation.
At any rate, I was very annoyed with their insensitivity to the situation and their lack of follow-through in helping us with this change.
But, I rise above...
Luke is officially 9 years old and not much has changed. He was spoiled for his birthday and Christmas and we have not seen much of him since the Nintendo DS arrived. He is obsessed.
They kids have had plenty of family time and Christmas seemed to last for a full week.
John should have had lots of recovery time, but as is usually the case, days off just make his body realize how exhausted it is and he usually ends up sick.
The girls are doing well, and thrilled with their DS and Leapster respectively. Italia loves all the empty boxes and we could have all saved a lot of money dumpster diving for old boxes for her instead of gifts.
Toodles for now -- I need to intervene with these girls!
N
Wednesday, December 5, 2007 9:38 AM CST
I was looking over old videos the other day and wow, have my kids grown up. Even Luke in the last 2 years has grown up so much and ALexis in the last year has gotten taller and lost that baby face.
Time is passing by so fast it is hard to remember to stop and smell the roses. I am the most remiss to do this even though I remind have of the rest of the world to do so.
I am often reminded this time of year as Luke approaches another birthday of the commitment I made to myself and to my family not so many years ago as I stared the possible death of my son in the face. Make each day count.
So, yes I have plenty of days when I do not feel as though I have lived up to that commitment but that is the beauty of another day -- it is another chance to succeed at the previous day's failures. It is another opportunity to make it right.
So today, I am trying to undo my PMS week of angst on my family and make it right. Today I am trying to start anew and make each day count.
Perhaps it is the mental reprieve the wonderful Sylvia gave me yesterday and taking the kiddies to the movies. Or perhaps it was a wonderful lunch with Carolyn and Wendy and realizing we moms are an incredible bunch or perhaps it was waking up today at 4 am with Luke watching TV, the baby wide awake and realizing that John does it every day and I feel like I am going to die.
Whatever the reason, I am reminded to make each day count. For after all -- what else is the point!
Luke will celebrate his 9th birthday next week. I am in awe of how far he has come. Physically he looks better than ever. He is taller, leaner and still as brilliant as ever. He is becoming a little more patient with his sisters and a little more of a team player. He is learning the value of quality versus quanity (although slowly), and he is becoming an advocate for his own wellbeing and the virtues of others.
Enjoy these days...I know I will!!
Nicole
Friday, November 16, 2007 9:15 AM CST
Wow - where does the time fly? I cannot believe my favorite holiday THANKSGIVING is right around the corner followed as Andrea would but it an hour-and-a-half later by Luke's birthday and then Christmas, New Years and wow, 2008 is here.
Things have been crazy busy for me keeping things moving along for everyone else.
The kids finished their 1st quarter with wonderful report cards and comments from their teachers. We are thrilled. They continue to amaze us with their skills and their ability to be great at school and give us a run for our money here at home....hahahah.
Luke's PEZ collection is still growing, having lost yet another tooth, #18 of 20. The tooth fairy delivered a Bee Movie Pez to which Luke was concerned he did not have enough teeth left to obtain the rest of the Bee Movie Pez. Silly mathmatician.
Anyway, I am looking forward to quality time during Thanksgiving with my kids and our family. Our lives become so mechanical sometimes with homework and projects and therapies and eating, sleeping, laundry that we really do not have enough just shlump time to exist.
I miss that time. When they were little, it was harder to have them under foot but we did not have to really be anyway on anyone's schedule but our own. Much more fun nonesense time. Now, that seems to be an unfortunate luxury.
I have been busy working on the Pediatric Cancer Foundation of the Lehigh Valley and its growth and plan for the future to continue to meet the needs of children with cancer locally, and with CBTF to help the needs of brain tumor families nationally.
I was recently asked to speak to a group of PhD students at Lehigh who are studying to be child pscyhologists about the PCFLV and my personal experience with a child with cancer. I think it went well. I shared my life, the story of Holland, Celebrating Holland and then my own spin: ****** SO where am I now? Still living in Holland With 4 kids I still hold my breath every 3 months for MRIs I still stomp my feet and cry WHY
But each day, I wake up to enjoy my son, my 3 daughters and the journey ahead.
Not because it is easy Not because it is what I would have chosen
I quit my paying job to devote all my time to running this foundation Somedays I eat sleep & breath it Some days I wonder why
But the rewards are infinite The return is uncalculable The difference almost too large to measure
I cannot take my son’s tumor away. I cannot predict his future, his challenges, or his pain I cannot rewind my life
Each day I make a difference. Some days I wish it was bigger. I follow my kids lead I challenge myself
I invite you all, in fact I challenge you all in your futures to make a difference To find that one thing that you are passionate about and to make it count You don’t have to change the lives of 100 people It starts with just one. *************** It even makes me cry when I read it and I did get a little tear-eyed that evening. But the message was important, the emotion real and I hope it made them all stop for a moment and reflect.
Luke's health is still doing well, his energy and spirit are awesome and we are truly Thankful this year for yet another blessing.
His next MRI is right after Christmas and I promise not to wait till then to next report.
Be assured although my desire is to write weekly, my ability to carve out the time is lacking.
Love to you all and thanks for your ongoing support, love and understanding of our life in Holland.
Sunday, October 7, 2007 8:21 AM CDT
Okay so last night at Camp while watching the Masquerade party a few things occurred to me.
1. Despite shaven heads and wheelchairs, kids are kids and they love a good costume party 2. Dancing can solve most of life's problems 3. Elvis has returned to the building 4. Cheetah girls live in my household
Really though, brain tumor week always amazes me because these families and kids have been through so much, yet their reliance is unwaivered. In fact, it is sometimes the resolve of others that keeps us a float, and the friendships and connections that make Camp so amazing.
Yesterday at the Camp I was caught up in reflection of everyone's story-- how there is so much to tell so much to share, so much "chicken soup" to go around. I think a book needs to be written, a story told -- I am going to try to put this together. Any publishers out there....
Life at Camp is good. The kids are having a great time. Luke made his costume last night -- "hatclownster" Hat with clown hair with monster hand and fingers. Priceless as usual. The weather has been nice for Maine. Rain last night and cold this morning, but beautiful. Tonight is date night - most of us are here stag so karoke will be a whole new genre.
So more to report later -- the coffee is flowing and there are then moments of thought for me that I will have to jot down...again!
Love to all Nicole
Friday, September 7, 2007 2:53 PM CDT
UPDATE 9/25/07: Luke's MRI was STABLE with a slight decrease in one of his tons of cysts. We are psyched. We always hope that a lot gets smaller, but I will take stable - the alternative is much worse!
So, onto enjoying the fall and all that it brings! More to come ***************************
AHHHHA finally I post. My last post froze in the computer and was lost for all eternity and so finding the time again ...well, took time.
Needless to say a ton is going on. The kids are back at school and believe it or not so is my temper. The crazies of school must be haunting us because no one remembers how to get dressed, put their socks on, eat etc. without constant coaxing and harassment.
Then we have the battle of who is going to be first at the bus stop, followed by moans and groans over what catastrophy I packed in their lunch. The compulsive lying and fighting. AAHHAHH Calgon save me.
The end of summer however was SUPER exciting. My 15 year old - 2nd cousin from Germany came to visit and we took him and my kiddies to Hershey Park where they had a BLAST. The Boardwalk water park there is awesome but SOOOO crowded. Fortunately it gave us less crowds at the other rides but my kids were determined to spend time at the Boardwalk regardless. All in all it was super fun and Justin (my cousin) rode EVERY roller coaster most without me!
Then something ultra special came around and that was the Magical Moon Foundation's earth day. Without going too into explanation of the Magical Moon, you are best just to visit the website (www.magicalmoon.com). Donna Green is an AMAZING Person, artist, activitist, friend. What an honor. So the Magical Moon was dubbing Luke into the foundation as Sir Luke the Loveable Collector and for Earth Day he was in charge of recycling to make the planet a better healthier place where the creepy cancer critters DO NOT live. He and Sir Michael sold lemonade at the event, Princess Isabella and Italia also attended (Princess Alexis was off to Hershey Park again with her girlfriend). We were gracious recipients of an Angel Flight to Mass for the event and wow -- what an experience that is in and of itself. Those pilots are heroes.
Luke met some amazing people at the Magical Moon and the farm is just that, magical. We hope to return very soon. August also brought birthdays -- Alexis turned 7 and Italia turned 1. What an event. ALexis celebrated with her first friend sleepover and Mom got to relieve a childhood sleepover complete with ice cream sundaes that you eat without hands, how much do you know about each other questions, High School Musical 2, the new Hannah Montana and goofiness till 1:00 a.m. The family birthdays were celebrated on Sunday where after woofing down her piece of cake, Italia WALKED. And, since walking has been getting into everything. Alexis is now the proud owner of Webkins which is an entirely new phenomenon that has taken over our lives, and Italia is sporting some cool new duds and SHOES. Finally, prior to school starting Luke attended his 1st EAGLES FOOTBALL GAME. The boy was in his ultimate glory. He had awesome seats 24 rows up from the field. He went prepared with 2 disposable cameras but unfortunately the lighting was such that his pictures turned out pretty dark. He said the day was the best of his life. It was "ridiculously awesome". Nice. Thanks Pam! Thanks Fred.
Somewhere in there we also had our 4th Annual Kick for Kancer event and what a perfect day. We all worked so hard this year to make it extra special and the kids had a great day. We even got some press from the local news and papers WFMZ coverage of our event: http://wfmz.com/view/?id=137531 (you can click watch video)
Morning Call Story: (archived now): http://pqasb.pqarchiver.com/mcall/access/1321463081.html?dids=1321463081:1321463081&FMT=CITE&FMTS=CITE:FT&date=Aug 16, 2007&author=The Morning Call&pub=Morning Call&edition=&startpage=B.7&desc=Kick for Kancer is day to let loose
Lehigh Valley Sports News: http://www.lehighvalleynewsgroup.com/WebApp/appmanager/JRC/Weekly?_nfpb=true&_pageLabel=pg_wk_article&r21.pgpath=/LHV/Sports/The East Penn News&r21.content=/LHV/Sports/The East Penn News/TopStoryList_Story_613147
Our website was listed incorrectly but hey, the most important things is the kids.
Finally, school was around the corner and we celebrated Labor Day with our friends establishing hopefully new traditions for our families. We attended a wedding (which gave John and I at least a few hours without kids) and we made it through the first week of school (barely!)
So all in all, it has been a great couple of weeks. I am still very busy working on the Pediatric Cancer Foundation stuff (www.cancersupportgroup.org) and keeping active in other organizations and Boards.
Luke is still playing Miracle League baseball (at least till the season ends in October) and we are hopeful for some good news soon...
LUKE's next MRI is 9/20 ----
So, thanks for your prayers, your good thoughts, your well wishes, your notes, cards, visits. We are thankful for all the angels around us and say some extra prayers for some wisdom for me -- this parenting thing is a tough cookie.
Tuesday, July 24, 2007 7:15 AM CDT
Boston feels things are going ok. They realize there is a shift of things but still are unconvinced that there is any true progression. Unfortunately no one knows for sure either way so we remain lateral for now.
Luke is doing well despite some mood issues. WE had a long talk the other day, with more of me putting the responsibility on him. Luke spends a lot of his time in an angry pose. Actually angry is not the right word but I cannot come up with one that adequately and properly summarizes his mood. My talk with him consisting of telling him that he is in control of his own happiness.
Rather than blaming everyone else for his mood, he is the engineer. I said Luke every day we have 2 choice: embrace the day or spit on it.
Lately you have been choosing to spit on it. Well, then it is on you. I am no longer going to try to facilitate your happiness because it is unappreciated and not helpful. Of course Luke tried to play the brain tumor card -- to which I reminded him that lots of other kids have brain tumors and they embrace each day and are happy. It is a choice. Even for moms. I could stay in bed all day and feel sorry for myself or I can get up and provide a fun day for you and your sisters. That is what I try to do.
Luke, however, confuses fun with things. He equates buying stuff or getting stuff with fun. WE never do anything fun because we aren't out buying him stuff every day. Luke, things do not bring happiness. Memories, experiences, life brings happiness. Things are just things and 5 minutes after you buy them, you are still not happy.
Sunday and Monday Luke's attitude was so much better. I think in his mind he is still hoping that his good behavior will be rewarded with something. Yesterday I made a point of telling him there is no physical reward at the end of the day for this change. The reward is in yourself and the relationships around you. The time spent with your friends, your family, in happiness and not sulking. The joy of a Monopoly game that doesn't end in yelling, a spontaneous stop at the ice cream shop just because versus you earned it or you were good for 1 hour so you are rewarded.
It is a long road ahead but I hope we can make it -- for our sake but especially for Luke's. He has so much to offer once he gets past his need to be first, the best, the greatest etc.
In the meantime, we are trying to find simple things to do for the rest of our summer. And JOhn and I are making plans for future avenues for quality memories with our kiddies.
Recently a friend of John's passed away in a tragic accident. SOmetimes you realize that all the time you spend planning for the future may never be realized if you don't spend it in the present. We have been fortunate to have that cast in our face with Luke's diagnosis; now unfortunately we have had a sober reminder that it can strike any of us. We are just trying to focus on today.
Nicole
Sunday, July 8, 2007 10:07 AM CDT
UPDATE: Mon 7/9/07 The doctor called today after review of the MRI. He feels strongly that the open space inside the tumor which was previously liquid is now filling in with solid tumor -- aka the tumor is growing.
This is of course not news we were hoping to hear but it does not currently change our position. We are still on a watch-and-wait and will see what Boston reports after their review hopefully next week.
Luke is still feeling well and that is the most important at this juncture. Only time will tell what this potential "growth" means and at what point it will become problematic to us all.
******************* So, oh my where to start. Camp Sunshine was amazing again. Due to the long drive and the small baby, we decided to take an extra day for travel. We drove to Boston and stayed over. The kids had a great time and it really helped them unload a lot of energy for the next day's travel.
We arrived at Camp and spent the next week enjoying the beautiful Maine weather, the water, the sky, and the amazing friends, kids, families and volunteers that make Camp so special.
Jan and I had our daily morning coffee hour which we this added a walk too (not so easy to drink coffee, walk and carry a baby on your back - but it can be done!). I miss Jan already and my good Peets!
The kids had an amazing time at the waterfront, playing games, doing crafts and swimming every day. Luke even went swiming into the Lake for the first time this year.
When the time came to leave, we headed out in the dark of night and crashed at Jan's house outside of Boston -- THANK YOU SO MUCH!!! -- then headed home.
Aside from the GW bridge, hate those NY bridges, traffic was good and the trip was tolerable.
Home presented the managerie of unpacking, laundry and all the upcoming appointments.
The MRI was 7/5 and Luke had planned to do it without sedation for the first time EVER. HE was psyched. He was prepared. Then fear set in. Just before he headed to the MRI room, he started getting angry and mouthy (FEAR) and said he was not going to do it and I could not make him. Well, I said try, I begged...he said I will go back but I am not going to do it. One minute passed ... no Luke ...looking good...two minutes....no Luke...looking better...three minutes ... no Luke... could it be....four minutes...no Luke ... perhaps...five minutes....oh here comes LUke.
So we had him sedated and freakishly after the sedation he had to cough but with that sedation he could barely cough so he just stopped breathing. AHHHHHHH ummmmm....readjustment, should we bag him...finally a loud cough and he is fine. I probably got a few more grays that morning, watching the clock till he came out perfectly fine.
He also started to wake up towards the end so they gave him more sleepy medicine which then made him sleep another 2 hours -- so the ordeal was long and after he woke up he was a CRAB with an attitude. FOrtunately God was giving me patience or I would have leveled Luke right there -- yelling in the restaurant, hitting and kicking, blah blah blah...it was ugly but we survived.
So the report...well my appointment is suppose to be Monday although the oncologists office calls to tell me they messed up the schedule and the doctor will not be in on Monday we need to reschedule. Great. So needless to say I am not a patient person, I emailed the doctor for any word. He said the report stated "UNCHANGED" but he wants to review it personally this weekend and let me know.
SO initially it sounds decent. Not as good as LUke had hoped after pouring the Holy Water from Lourdes on his head and making a wishboat wish at Camp Sunshine for no tumor, but we will take it.
So, endocrine and vision on this week. I will keep you all posted once I find a way to steal time to keep this journal updated more regularly.
THanks for your love and support. The days are full and sometimes crazy, but we are counting on the memories to last us forever.
On a funny note, after a fun party at Sylvia's farm last night, we all came home sticky tired and silly. WE did the family pile up 3 times on the big bed and the kids had a great time. This morning Isabella said, MOm I really liked that family pile up. I guess that is because she was not on the bottom with everyone on top of her. .. ouch my back!!!
Nicole
Tuesday, July 3, 2007 5:31 PM CDT
I have so much to write -- we were at Camp Sunshine, School has ended, summer is in full swing, but we are coming up on 4th of July and then our July 5 MRI so I will save my moments to tell you more later.
Right now, I am still catching up on laundry and all that comes with returning from a vacation.
Nicole
Thursday, June 21, 2007 9:11 PM CDT
Okay, so Italia did NOT win the contest, but she is a winner in my book. Thanks to all of you who voted!!
Things here are crazy again (or still) but I hope that ends shortly. The kids ended the school year with a bang and lots of good grades. Luke had his neuropsych testing the next day and we have been busy this week with doctor appointments, blood work, bible camp and other duties.
This weekend we leave for Camp Sunshine and hopefully after we return well rested, we can begin to enjoy the summer. I did warn the kids that we were beginning Boot Camp to whip them in to shape with their bodies, their minds and their manners. Hopefully, it works!
Currently at 10:30 pm I am doing laundry and still trying to organize the overflow of papers that is life. Dishes are waiting to be emptied from the dishwasher, junk is waiting to find its rightful place but otherwise the house is QUIET.
Everyone is doing well and feeling well so we hope that is a good sign especially when we return and Luke has his MRI.
Prayers of course will be appreciated.
Off to finish packing and last minute duties.
Nicole PS: Above picture is the kids with Phil Simms!!
Friday, May 25, 2007 1:45 PM CDT
Okay I am a little quirky, but I submitted Italia’s picture for the Baby Idol contest on WLEV. The winner gets a $5,000 savings bond for college. All you have to do (I think) log on to: http://www.wlevradio.com/index.htm go to the Baby Idol section and VOTE FOR ITALIA. Italia is #83 (on page 2) on the site and you have to register to login (but you can opt out of receiving those annoying emails from them) so you can login and then vote for “083 – Italia”.
PS: She is the one in pink sitting by the pink flowers.
Thanks.
Nicole Ronco
Tuesday, May 15, 2007 8:08 PM CDT
Okay - So Luke's Holy Communion was beautiful. The day was perfect, the sun was shining a gentle breeze was felt, everyone was smiling (except for those moments Luke was complaining about his waiter suit and his annoying shoes). Monsignor was wonderful and spoke to the children directly. I wish I was a better photographer to have captured more pictures. Sylvia I am sure got some great ones!
I would like to thank everyone who attended with our family or who sent their wishes for Luke. It meant a lot to him to have the people he loves the most around him during this time.
Okay now for the bigger news. TODAY IS THE DAY. Yes, the day 5 years ago to be precise when our world fell apart. The day when my heart sunk in my stomach and has never fully returned to its rightful location. But, as each year passes, I reflect more clearer on where we have been and perhaps where we are going. Today, I did not sulk. I did not cry. I did not feel sorry for myself or for Luke or for anyone. In fact, until this evening I did not even say the words out loud. I had a wonderful conversation with Andrea about lots of things because I needed to feel connect this day to that world (Sorry Andrea if you did not realize the true force behind my call!!) and I grocery shopped. Today I volunteered at Luke & Alexis' school. I spoke with another cancer mom and I worked on things for the Pediatric Cancer Foundation of the LV. I watched Luke hit at baseball and then I attended a board meeting. Almost all day I was aware of the date, but not consumed by its hold on me.
Most appreciated however today we received a gift from Danny Lam who just returned from Lourdes with some water for Luke. Today it arrived. Not tomorrow, not yesterday but TODAY. So I asked Luke what he wanted to do with the water -- dump it on my head Mom, so my tumor goes away. Well, after a full day, we all sat around Luke's bed, and poured some water on his head and then said our family prayers.
Alexis prayed for Luke to be all better, Isabella first prayed for Luke's eyes to be better than prayed that he become a fairy or a toothbrush (I have no explanation other than she is 4 years old). I prayed for Luke to be healthy, and whatever that means for him and whatever the plan God has for him. As always, I pray for strength to keep going, for healing, for wisdom, for patience ... I have a long list for myself.
We are winning in some small way -- we have won 5 years with Luke. On that day not so long ago, I was praying for 5 minutes, 5 hours or 5 days. Today, I watched my son play baseball and do homework and jump on the trampoline.
These days are full of miracles, I just need to remind myself to stop and notice. Today is the day.
Thanks to everyone for your prayers, support and love over the last 5 years especially.
Nicole
Thursday, May 3, 2007 9:07 AM CDT
So wow some AMAZING NEWS. Yesterday for the first time EVER Luke rode his bike WITHOUT training wheels. He was nervous, he was afraid, he said this was the worse day of his life (for other reasons too -- more coming) and he was going to die (oh yes, just what I want to hear!) but he did it and rather quickly too. His therapist is AWESOME and within no time he was riding. He is a little wobbly still but I have video and it is a beautiful thing. I never thought we would see the day and here it is!!!!! In the beginning when he was getting all his pads on and his helmet (just in case he fell we had him super padded) I was outside doing a cheer "Give me an L - give me a U - give me a K - give me an E, what does it spell..." you get the idea. Luke was cracking up because he thought he had the weirdest mom in the world.
Second reason Luke thought he was going to die yesterday (did I mention I really do not want to EVER hear this from his mouth) was the 1st Lupron shot. We prepared the butt cheeks with some good ol' EMLA cream and fire away. He was screaming before the needle touched the cheeks but in the end, he was fine. At night he told me mom, my butt still hurts. I said Luke, my butt hurt for over a week after you were born -- I will let you know when we are even! He just laughed.
So yesterday although jam packed as usual was a rockem - sockem day !!
Count down to Holy Communion on Saturday. Luke and his friend AJ are carrying the gifts. He is excited.
Also, Luke's 1st Miracle League game is Saturday too. Actually he has a double-header with his St. E's baseball team having a game the same day, but I think he is only going to play one game and relax.
If you are interested in his game schedules you can click this link and there it will be! (Alexis' is there too) http://users.rcn.com/sflores/baseball%20schedule.doc
Thanks Nicole
Thursday, April 26, 2007 7:03 AM CDT
Florida was awesome. The weather was wonderful, the kids for the most part were excellent and we all relaxed and enjoyed our surroundings as it should be.
Admittedly, it took me a few days to relax. I would lay by the pool thinking of all the stuff I need to do, but by day 3 I think I had let go of that feeling.
The kids swam and swam and swam. Alexis & Isabella played in the sand A LOT and Luke did endless rides down the water slide.
We saw the Harry Leu Botanical Gardens (Awesome) and we saw Epcot's Flower Show/Gardens. We did Blizzard Beach and the kids LOVED it. It is amazing how much they have changed and developed since we were at this park last time -- they can do so much more. We all loved the huge family tube ride and their faces were priceless. If you could have bottled that ride -- no fighting, no yelling, no competing, just fun family happiness -- we did it over and over again!!
My mom & dad were super. They not only helped tremendously with the kids but took special time to bond with Italia and helped watch her at the water park so John & I could spend time with the other 3. My parents also gave John & I a dinner date night. After we put the baby to bed we headed to the Arabian Nights dinner show. The food was ok, the story was borderline, but the time out alone was priceless. Thanks M&D!
Also, John & I stole a few hours one morning for golfing. We only played 9 of the 18 holes but it was a beautiful 72 degree morning at 7:30 a.m. and the time alone was again so therapeutic.
For a week, we just were...
We were glad to come home to nice weather here also, although the piles of laundry and clothes to put away are mountainous.
I will post pictures soon -- I am writing as fast as I can while the baby screams for me.
Ta -ta for now Nicole
Friday, April 13, 2007 6:59 AM CDT
So, our appointments on Wednesday went relatively well.
Endocrine is pretty sure Luke is entering precocious puberty and is running blood tests and evaluating a bone age to make a final determination. Of course this will mean Lupron injections to stop this stage affording Luke hopefully the maximum chance to grow to his supposed height. Truthfully, I can live with a shorty as long as he is living. But, this is yet another path in our journey.
Neurosurgery was the more important meeting and fortunately, Dr. Sutton was very amenable to our decision to watch-and-wait in light of no symptoms. He joked (odd for a neurosurgeon huh!) that his professor once told him that you can not do any better than asymptomatic. He said the window of opportunity is still available and he does not feel that anything he does surgically is going to preserve Luke's vision, in fact going in could be a 50/50 gamble he goes blind from the surgery. But, we are realistic that we may be in need of his services down the road and so was he "pay me now or pay me later".
I left feeling reassured in our decision and as everyone keeps reminding me -- we are his parents and we know Luke best. And as I remind all the doctors, we live it every day and right now, we want to give Luke this time to enjoy his life - while he can, is and is able to.
So, life in our house moves on. We will enjoy our vacation with a clear head and then head to more appointments when we return for vision evals. Until then -- it is what it is.
still there is always a little part of me that believes in miracles; in the thought of waking up one day to the news that the fluid has reabsorbed and there is only a little tumor (or better yet no tumor) there and they feel it is dead. Admitedly this is only a very little part as I am too much of a realist, but nonetheless!
On a side note, everyone else is doing well. Italia is almost 16 pounds and 7 1/2 months old. She is 28 1/2" long and is really starting to explore anything within her grasp and a little beyond. No crawling (she may skip that stage) but she loves to stand up and hold onto stuff.
Alexis has ear surgery to clear her canals and determine the status of her tubes in early May and Isabella despite a current aggrevation of her asthma is just her crazy self.
Ciao and blessings,
Nicole
Thursday, April 5, 2007 6:56 AM CDT
Oh, yes, you will never believe the conversation that Luke & I had on the walk back from Quincy Market on the way to brain tumor clinic.
We walked past the Holocost remembrance walls and we were talking about the significance. In typical Luke fashion he said those guys (the Nazi's) were stupid and he would have shot them before they killed so many people etc. Well somehow from that conversation we ended up having Luke ask why God doesn't make him better. You know Mom, he is so powerful and everything, why does he let bad things happen --- I could die during my surgery you know.
Well, I was stunned. Obviously, we are doing the right thing in keeping Luke informed on his condition because otherwise this could have been even scarier for him -- in fact I think he has been carrying this for a while and maybe Monday's appt just let is blossom.
I tried to explain free will to Luke. I tried to tell him that sometimes I ask myself that same question but I know that God is hurting for kids like Luke and for Luke. He cries to see the pain they go through. I know that God is amazing and there is a greater plan for us all. I said maybe God is helping us see clearer to help others; see all the amazing people we have met because of cancer and the great things our foundation does to help other families like ours etc. We talked for a while, I told him no matter what don't blame God. It is hard to understand why an amazing wonderful God would let bad stuff happen, especially to kids and why Luke at his age has had to see friends like him die is just wrong. Oh, man -- these are tough questions even for an adult.
Oh, yes and the above picture is of Luke at age 3 right before he was diagnosed. That is what prompted our visit to the eye doctor, he walked into the bank door and thought for the longest time that all this happened because Mom did not use the drive-in. Seems like a lifetime ago but we are coming up on 5 years next month since diagnosis. ********************************** Just a quick message as we are heading out shortly --
News from Boston was promising. They do not feel that there is real actual growth of the tumor. I had them re-review the films from last year in conjunction with this recent film and rediscuss and they still feel that there the increase in size is mostly a redistribution of the fluid in the tumor cysts which are complex and numerous.
WE are elated as this news as although it does not negate the definite changes that are taking place, it does give us the clear conscious to continue our watch and wait approach.
Given how wonderful Luke is feeling and the great quality of life he is having, we were not comfortable putting him through another surgery without indications of the dire need.
So we proceed CAUTIOUSLY OPTOMISTIC. There are changes but with the grace of God, they will not manifest as growth etc.
More later -- my kiddies are crying to eat!!
Thanks for hte love, support and prayers. IT WORKED.
Plus, I ate chinese last night and my fortune --- "Now that the roller coaster is over, get on with your life"
WEIRD HUH?
Nicole
Monday, April 2, 2007 4:15 PM CDT
OK - so the news is NOT good. I pouted the entire way home silently hidden from Luke. I cringe as I write this now, but as always, we are committed to keep moving forward and try to never give up.
As we near the 5th Anniversary of Luke's diagnosis next month, I had hoped that we would be in a better place. But 5 years ago I thought my son might not live to see these days and here he is -- so God is good.
The latest MRI report states that there is a few things going on: (1) an interval hemorrhage has occured within the cysts; (2) greater intensity in some portions; (3) increase in size of the cysts in the periphery, anterior left, superior and inferior right have all increased; (4) solid portion is larger by about 15%; and (5) ventricles are collapsed. Possible pre-puberty
So all that mucky muck means for us is that we may have to revisit the surgical option to buy him time and then address the result afterwards -- but we will wait to see what Boston reports and suggests.
I am scheduled to see neurosurgery next week and endocrine hopefully we will get a better sense of where we are headed
So, I wish (selfishly for myself & Luke) that I had better news to share. But, like the warriors before us and those after -- we will fight to the death. I believe God has a plan. I will remind myself to trust in that belief. I will continue to love Luke with all my heart and enjoy the rest of the sunshine today.
Love to you all -- God Bless!
Nicole
Friday, March 30, 2007 1:58 PM CDT
Okay so there is no news yet and the wait could be crazy but I tried to steal a snapshot with Luke's doctor before his conference and he did not seem too concerned although he said he would have to look at them in detail when he returned the impression I got was that it was more the same: some bigger, some smaller.
Stay tuned!
Meanwhile, we are trying to enjoy the sunshine, begin our spring clean and get ready for Boston next week.
Luke & Alexis begin baseball and softball practices, repectively, this weekend. Should be fun!
Nicole
Monday, March 26, 2007 7:41 PM CDT
Wow -- seems so simple to find a few moments to catch everyone up on our lives but this is the first chance I have had and it is going to be quite brief.
We have an MRI tomorrow -- Fingers Crossed!!
Isabella was sick, the baby has been quite needy lately and there just aren't enough hours in the day to keep up with all my responsibilities.
We are heading to Boston next week to Brain Tumor Clinic and hopefully to some good news.
Luke continues to do well although tonight he was complaining of a headache....hmmm.
We had to postpone endocrine because of the weather ---
But, we seems healthy, the sun hopefully will shine down on us and we will get some good news before our vacation in April.
I will update soon!!
Nicole
Monday, February 26, 2007 9:18 AM CST
Okay -- so I am recovered sleep wise from THON, but low and behold if I did not just injure myself.
Short story is I took the dog to the dog-park with the girls to meet my sister and her 2 dogs and their friend and their dog. As I was walking with the dog, holding the snacks and the baby carrier, I stepped in a pot-hole that I did not see and fell to the ground on my left side all the while severely twisting my right ankle. I could barely move for 10 minutes and then, I got up and hobbled on. The baby was fine -- that carrier really protected her from anything.
The dogs had a great time and got all muddy as did we all. My ankle swelled and I hobbled some more; last night the black and purple had moved to my toes which were a little numb, but I can walk much better now although stairs are still a challenge.
At least I did not break it -- could you imagine my life if I were really incapacitated??????????
Last night I was again copying old family movies onto DVD. I am up to 2004 and I was watching our trip and Easter egg hunts of 2004. Poor Luke was so swollen from steroids and the prognosis was dim -- his tumor had grown again, we had exhausted all treatments except radiation and we were preparing to go to Boston for protons. He looked sickly and was having headaches and nausea daily.
I cried at where we were, I cried at how far we have come, I look at Luke now and he looks amazing. I cry for fear of every going back to that place ---I cry forever one else like us who faces this challenge each day. It SUCKS.
But today, I smiled at Luke and I kissed him extra kisses last night (even though he hates that) and I watched as he looks like a little man, taller than 3 years ago, thinner all around, feeling better than ever -- Thank you God!
I am sure this April, with our next MRI and visit to Boston, I will feel anxiety as always, but as I did in 2004, we will endure and we will persevere and we will keep fighting and hopefully, we will WIN!
Blessing to all! Snow is around us today; 2 hour delay for school --
Nicole
Tuesday, February 20, 2007 6:27 AM CST
Too much has been going on that I apologize for not writing but that amounted to just one more thing to fit in -- despite the solace it brings me.
Winter finally hit Pennsylvania with a bang last Wednesday, dumping 6-10" with lots of ice. Almost all major interstates (80, 81, & 78) were shut down and lots of folks spent many many hours on the roads. How bad I felt for those folks.
Then Friday hit and I celebrated my birthday by attending Luke's Valentine party at school and running the pin the arrow on cupid game.
Saturday we had swimming in the morning and then headed to THON. What is THON you ask? Penn State University's student run philanthropy for the Four Diamonds Fund out of Hershey Medical Center. Why do I care? Well the Four Diamonds fund helps kids with cancer treated at Hershey. We do not treat at Hershey but I beleive in the greater good in life plus, because I work at Penn State Lehigh Valley and our amazing Penn State Lehigh Valley campus sends 4 dancers to Thon, we go support them!
Luke serves as Penn State Lehigh Valley's THON child -- the one they look to when their feet hurt and their minds is fading. A large task for Luke who despite serving in this capacity for 4 years doesn't truly grasp the sacrifice of these amazing college kids. Fortunately, they have a multitude of friends, family etc there helping too!
So I headed up to THON on Saturday with Luke, Alexis & Italia in tow. A trip that should take 3 hours took over 6 hours -- darn interstates were STILL closed and we had to take crazy detours through the wide open country of Pennsyvlania. Something I normally would enjoy -- So while enjoying my several hours in the Berwick area I phoned a local realtor about properties there. A beautiful victorian on the water. A gem! Perhaps Aunt Pam will want to relocate!
We finally arrived at Penn State under the dark starving for some of Miss Sylvia's amazing chicken soup. We quickly sucked some down and headed right over to the BJC (Bryce Jordan Center) for THON. We were in awe once again.
Our dancers were looking good with just a little fading. The place was loud and full and amazingly cool (Rec Hall just got sooo hot). We even spied Dr. Spanier on Sunday and got a picture with him while we were on the floor with the dancers.
With our family passes we could access a lot of the cool stuff for the kids -- Luke & Lexi were amazing this year. Usually unless Luke is squirting everyone with his squirt guns he is bumming, but this year he really surprised me. We met a lot of families too this year which isn't always easy because we are in so many directions.
The best and saddest part was family hour where the kids and their families walked across stage (we sat in the bleachers for this) and then there was a video about those who were at THON many years ago and now are thriving, college students or married with kids. There was also a remembrance video and of course, those were the children who lost their battles.
It hurts. It reminds me too much of how quickly these moments change. It saddens me to think of all our brave kids who lost their battle this past year in just my circle of knowledge and I think why why why???? During one of the final songs they played a song that always plays on Timmy's website and I all but lost it.
Italia is calling me but I hope to update more on our adventures later. Play for the families of these kids. Hug your babies a little tighter and keep fighting with us all!
Love Nicole
Tuesday, January 23, 2007 6:15 AM CST
Quick Update:
Luke complained of an intense headache Sunday; luckily Tylenol made him better. We will keep watch and hope it is just too much eye usage (I made him read 4 books on Sunday!).
The news from Boston is super. They are extremely pleased with the scans and Luke's overall progress and health right now. We therefore are equally thrilled.
Luke continues to do well in his basketball, therapy and Braille although surprisingly, he is getting mad at getting up early to go. You may recall that Luke use to be an early bird riser (5 am). The last couple of months he has been sleeping till at least 7 am if he can, usually I wake him around 6:45 am to get ready for school. But on Braille days he has to leave the house by 6:50 am so when I wake him earlier he is not a happy camper.
It is a trade off. I am glad he is sleeping later -- probably a product of his busy school year and his extra activities. However, the yelling in the morning I could do without. Fortunately for us all, once I get him to Braille, he is fine.
Basketball continues to go well and Luke just signed up for Spring baseball at his school. In his grade, they still are not too competitive yet which fortunately works for Luke's deficits. Plus, he still plans on playing for the Miracle League in May too.
German is also going very well for Luke & Lexi and although they are not too prone to speaking outloud with me or anyone else conversationally, they do perform a similar task in reading with their teacher. HOpefully, it will remind them that they know it well enough to do so. I am amazed how much they have learned in 2 years. It is true what they say, a young mind is such a sponge. I am Jealous!!!!
Isabella is going to start German too beginning next week -- should be interesting.
Isabella had her first visit to the ER on Saturday. Luke pushed her off his bed and she hit the nightstand and got a cut above her eye. Not sure if it required stitches off we went. It was fortunately not deep enough to require stitches and although I tried to request something like glue or strips, the doctors chose to do nothing since it was not gapping open or did not do so when she moved. She was thrilled at the prospect of no more ouchies with that!
And my most amazing news --- Italia slept through the night!! Yes from 9:30 pm - 5:40 am. YIPPIE for Mommy. I woke up 3times in the night to make sure she was breathing because I could not imagine not waking up so many times. Each time, breathing away, sleeping away, content. YEH!!
So, I must scurry off to get the rest of us in order and pick up Luke from Braille.
More later! Thanks for the love and support!
Nicole
Friday, January 5, 2007 6:57 AM CST
Sorry for the lateness --- last night we went out to dinner to CELEBRATE!
Luke's vision is STABLE as a rock.
His MRA is stable.
His MRI is also stable although his doctor went so far as to even say he personally thinks that one of the cysts has disappeared. CAN YOU SAY AWESOME!
Lastly, Luke lost almost 2 pounds since October. Given the amount of weight I gained (hahahah) during this cookie season, I think that is AMAZING.
Of course, his height is still short compared to that growth chart, but we could not be happier.
We will follow-up with the psych doctor to see what tools we can learn to help with the hypothalamic impulse issue and proceed from there.
We feel such a relief today it is amazing. Thank you all for your prayers and well wishes. Of course, it made a difference!
Plus, the dental caps seem to only have had a mild affect on the films, not enough to have to necessitate their removal. YEH!
More later! Nicole
Saturday, December 30, 2006 8:33 AM CST
Okay -- I have a quick moment before the baby awakes from her nap. She has a little cold and is not sleeping too well the last day or so.
In the Ronco household Christmas came with a flurry. Lots of presents for the little munchkins and hopefully lots of enjoyment to follow. Among the favorites of Luke were his MP3 player and his new gameboy. Isabella loves her Dora dressup and her new Dora clothing armoire. Alexis loves her dance mat, her MP3 player and her gameboy too. As for Italia and Monte, they just cannot decide. I think Italia loves the diapers (or at least Mommy does!) and Monte will stick with the myriad of bones!
We all are excited about the trampoline Santa left and we cannot wait for Spring to set that baby up!
The kids have been good, but getting anything productive out of them is a task. Luke still has some books to read and a book report to do for next week.
And amidst all that, Luke's oral surgery was interesting. We arrived at the hospital at 6 am and left around 2pm. Luke was a champ although before going into surgery he was complaining how bored he was and why couldn't they just hurry up. Go figure.
Well he came out one tooth gone and 6 steel caps on his molars. It seems the chemotherapy has taken a toll on his tooth enamel and caused this lovely condition. Since they are baby teeth, the best way to protect them from decay is to cap them. Luke has been on a soft diet moving to a regular diet but some of his favorites still hurt a lot. And the new automatic toothbrush Santa brought just is not making his teeth happy -- he screams so loud when I brush his teeth our neighbors must think we are doing some crazy ritual.
That teeth fix however left us with 2 problems: without a tooth as evidence, Luke worried that the tooth fairy would not stop by. Luckily, the nurses at Sacred Heart (they were wonderful) wrote a note to the Tooth Fairy explaining that the doctor had to keep the tooth and guess what??? She came anyway and left Luke a Santa pressed penny and a new penny book. WOW.
Second problem is not as easy a fix. With all this "steel" in his mouth, is poses a potential problem for Luke's MRIs. Evidently, these are MRI friendly, inasmuch as they are not magnetic however because they are steel they may distort and cloud the MRI picture. Since Luke's tumor is so complex, obviously this would not help us in his treatment discussions. So, we have our next MRI on Tuesday and if it turns out to be a problem (lets pray it is not!) we will have to have the caps removed for his MRIs and then I suppose replaced each time. YIKES. Can you say poor house...
We are still awaiting Luke's glasses back from the doctor (you will recall these got broken in a school incident) and we are trying to keep positive for our big MRI week next week. I am trying to resolve this year to have more patience with my children, especially my precious Luke who takes so much energy from me with his impulse control problems and his anger, screaming, crying, etc.
I feel bad for this emotional roller coaster not only for myself, but mostly for Luke and his sisters. We are going to try to set up an appointment with the oncology psych doctor to try to find ways to address and navigate this territory when there is nothing medically we can do.
My baby brother got engaged on Christmas Day so we will be adding a new Aunt to the brood. She is a great girl, Tara, and we are so happy for them.
John's neice also got engaged and they already have a 10/07 wedding planned.
Looks like 2007 is starting out on a good foot -- lets hope it stays so!
Nicole
Monday, December 18, 2006 8:17 PM CST
Well Luke is officially 8 years old -- I cannot believe it. I still feel 25. Don't tell Luke though, he loves to share my real age with the world. Together we cataloged his large PEZ collection, adding the newest ones he received for his birthday and we enjoyed cake and yummy pizza with his favorite -- his family.
The last two weeks have been interesting. Luke has had another few incidents at school, mostly due to talking or getting out of his seat. Friday's however, ended in broken glasses and a stern reprimand from the principal. He is a good kid, but when he gets done with his work and his buddy is near by -- all bets are off. Goofaliciuos moves into town.
This week is full of lost of stuff. Last night Santa came on his sleigh for a surprise visit -- guess he was checking up on those naughty notes he received.
The kids loved it!
Tomorrow they are heading to the North Pole on Allegiant Air. I am so excited for them but nervous about all 3 of my kiddies on an airplane with only other kids a couple of elves and cookies and milk. Just a mom's healthy fear I hope!
Friday Luke has his oral surgery/dental day. After 10 doctor appointments and blood work today, I pray that Friday will go off without any complications. He needs this dental work done unfortunately and cannot tolerate it in office. Pray for a flawless procedure and ease of anesthesia for Luke on Friday and a quick recovery so he can enjoy our "Christmas Eve" with John's family in New Jersey on Friday night.
So the elves around here are keeping busy getting the last minute details in order. UPS has been right on time. Our cards have been sent. The tree is ready for its packaged guests.
My hope for this holiday is for the love of my children to surround us with happiness, for them to see more in giving than in receiving and for health and peace for everyone in the upcoming year.
Luke's next MRI is 1/2. Keeping my fingers crossed...
Nicole
Wednesday, November 29, 2006 8:08 PM CST
Please direct all your love and prayers at this time to our dear friends, the Kerpan Family, who recently lost their son Kyle to a brain tumor.
http://www3.caringbridge.org/pa/kyledkerpan/
Nicole
Monday, November 20, 2006 9:05 AM CST
As always, there is a few interesting tid bits to share.
Thanks to everyone who offered stories of sympathy regarding Luke's behavior. MOst of you had to report that you see it too in your boys, and of those brain tumor mom's out there it definitely seems to be related to tumor location etc. I appreciate knowing that we are all trying to find the answers...
Italia is doing awesome. 2 nights this week she slept 8-9 hours. It was so wild. I woke up heavily engorged (is that too much information?) unbelieving that she slept so long. We will see if that was just a fluke or we may be cutting mommy a break!!
Isabella's visit with the allergist proved quite helpful. She was given a lot of tests and pokes and turned out to have allergies to cats, molds and dog. Luckily for Monte the doctor said he could stay but she is to avoid too much lovey dovey and then wash her hands. We have been trying a new medication combo which has helped tremendously already. I hate too much drugs but I am happy to see her not be overwhelmed by her asthma and coughing all the time. Isabella also swam today during lessons on her own, finally letting go of the teacher. Horray!!
Alexis had an awesome report card. She is quiet in school the teacher said but I guess that is not such a bad thing! Her grades were super and we are so very very proud of her. Although she is on level for reading that is still one area we are working together to improve. After all, she so wants to read the Junie B. Jones books on her own!
The dog Montague is in a bad spell. He is starting to dig under the fence to run away and not coming when called (although this has always been selective on his part), now he doesn't listen at all.
We are thinking he is feeling a little left out with all the chaos and the new baby. So we are going to try to spend more time with him and perhaps that will help.
Last but not least my Luke. He, of course, had an awesome report card academically. He is a smarty pants. But, unfortuntely, the teacher had some comments about his behavior. As I have mentioned before, Luke is not always the kindest person, or the most respectful or the neatest. Evidently, that has trickled into his school performance too. He writes like an illegible doctor. And although he gets the work correct, he obviously is not showing pride in what he is producing. Now, I have seen him write beautifully, but of course that takes a little longer to produce. So we are working on that. Also, he needs to think of the world outside of Luke, and we are reinforcing his need to show respect for EVERYONE. Luke is not a malicious child, he really just has had a mixed up childhood and perhaps that has changed his perception of the parent/child hiarchy. Whatever the reason, we are trying to be more dilligent for everyone's sake.
Yesterday when I was tucking Luke in, I kissed his beautiful puffy cheeks 20 times. Luke hates to be hugged or kissed and I never get these willingly from him so I take as many as I can when I can. He turned to me and said, Mom, now that is quite enough! I thought it was so funny!
So he is now limiting my coffee and my kisses. When will it end!
Thanks for all the love and support. Continue the prayers for Kyle.
Blessings. Nicole
Friday, November 10, 2006 9:11 AM CST
Things here have been moving quite a long at the usual Ronco pace.
Italia had a well visit on Monday. Weighing in at almost 12 pounds and 25 1/2" she is in the 99or height and 55or weight. She is beautiful and doing GREAT.
Isabella has been having more difficulty with her asthma lately -- constantly coughing at night and first thing in the a.m. Then add in her constant running and it lasts all day. Of course I exaggerate but we hope to get her set up with the doctor on the right course soon. she started swimming and is progressing; she did leave go of the instructor for the first time last week. Progress is slow!
Alexis is doing great. She is growing like a weed, loving school and swimming like a fish. We are working hard on her reading and hopefully that will pay off.
Now for my Luke. Hmm... well we had a few incidents at school. One where he ate a fellow classmate's ice cream thinking it was his and another where he had to write an apology to the student teacher. I am not sure what to make of this since Luke ends up with selective memory each time we ask him about it; he tells us he forgets what he does after he does it so doesn't know what he did to the teacher or why he ate the ice cream. Don't get me wrong he is a good kid but I am looking forward to next week's conference to get to the bottom of this.
Luke also has been having some more breakdowns lately without explanation. When I picked him up for therapy the other day he cried because I forgot to bring him water. When I asked him to put his laundry away he cried. And then on Wednesday when he had to see the dentist for some work, he became overwhelmed and agitated at the simplest of procedures. Therefore, we have scheduled him for outpatient procedure at the hospital where they will give him anesthesia to do his dental work. I am not sure if this is just because with all the equipment and people in his face it freaked him out but needless to say it is just another step on our journey.
Luke is enjoying swimming and time with his friend ALex. We still worry that he is just he worries too much like an adult and does not enjoy being a child. When he makes a mistake he constantly says I hate myself or I wish I were dead. This is so heartbreaking to me considering the specialness of any child and the uncertainty of course of the lifespan of rain tumor children. He gets a self loathing for attention sake but it robs him of happiness. Then he sometimes has outbursts with his sisters that send him into a tyrate for no reason again making him grumpy and sad. Tumor or personality quirk? So distressing to be a parent some days and others so amazing.
Thanks for listening to my rambles. Blessings to all. Special prayers for Kyle and the Augut family.
Love Nicole
Monday, November 6, 2006 6:27 PM CST
I have started this update so many times...but always a distraction. So tonight as I sit waiting for the UGI guy to turn my gas back on since we had a leak, I will update.
Things here are relatively quiet actually. Luke, Lexi & Isabella started swim lessons again. Luke & Lexi are doing amazing. They swim so well; Isabella is still at the beginning when you hang on for dear life to your instructor. Hopefully that will change before the end of this session.
This weather has provided us some time outdoors before the snow arrives and the cold cold weather. Luke is enjoying hitting golf balls in the back yard.
Last week his class celebrated All Saints Day by dressing up as Saints. Luke picked Saint Luke (go figure!) and did an excellent job. It was so moving to see all this little gals & guys dressed up.
Halloween was also an exciting adventure for my kiddies in our new neighborhood. They dressed up and we headed out just as the rain began to fall (the rain waited just till trick-or-treat time). We walked in the rain for about 1/2 hour before Isabella conceded she was freezing. Then I drove them around in the van with the side door open and they would jump out. The girls gave up first but Luke hit almost every house.
In the end they each accumulated 142 pieces of candy which they traded in on my 10 to $1 deal and received $14 each. Not bad!
Meanwhile, I gave away most of the candy but what is left here just keeps calling to me. Will my waist line ever get back down to normal size.
Luke is also working very hard on his braille and now that he has a Brailler he has been writing notes to everyone. It is so exciting. He also continues to work with his orientation/mobility instructor. THis week they are at the shopping center. YIKES.
Otherwise things are quite busy around here. Daddy is working a lot and mommy never seems to complete any project because Italia keeps her on her toes.
Italia as a note weighed 12 13 oz. today and was in the 99 or height measuring 25 1/2 " long. I swear she is already in 6ms pants she is so long!
She did get shots today and has finally crashed after a fussy spell.
We are all now gearing up for Thanksgiving at our home and then...Luke's birthday.
Enjoy the pictures from Halloween.
More later Nicole
Friday, October 13, 2006 11:29 AM CDT
YIPPIE... Stable.
Some cysts shrunk; some grew. Overall is looks very good. Even the oncologist was surprised. So we bought ourselves a few more months, through his 8th birthday and the holidays before our next MRI to see if any surgical decision needs to be made.
Luke's weight was up 1 pound and he grew 1 inch. Not bad!
His vision was stable as a rock.
Overall the day was a HUGE success. Luke was quite tired after spending much of the down time catching up on class work and homework. He napped on the ride down and the return ride but was charged to go to the Whitehall Fall Parade last night. We were quite chilly but had a great time watching the parade and the kids collected a ton of candy.
We went to Camp Sunshine again last weekend briefly, leaving Saturday morning and returning 12:30 a.m. Tuesday, just in time for a quick wink before heading down to Philly for the MRI. But Maine was awesome in October. 70 degree weather, beautiful skies, fireplace, great friends. The kids had an amazing time. Went swimming, boating, minature golfing, made crafts and just enjoyed an amazing opportunity. Thanks Camp for everything.
Thanks to all of your for your support, prayers and positive thoughts.
More later! After the whirlwind week, I am exhausted.
Nicole
Thursday, October 5, 2006 9:42 AM CDT
Sorry I have been delayed in updating; believe it or not my hands are a little full even for me!
Things here are quite busy. We celebrated Luke's last baseball game recently; he cannot wait for spring ball he loves it so much!
We also celebrated Italia's christening and Isabella's 4th birthday (her actual birthday is 10/12). Everyone was so well behaved and had a great time spending the day with their family-- my kids greatest joy!
I learned a few things myself too: 1. Infants make the same squashed up faces that old people make; seems we go full circle. 2. You need diapers at the beginning of your life and the end; 3. More kids is the merrier and but also the louder! 4. You can get up at 5:00 a.m. and pack lunches even if the smell of chicken nuggets at that hour is making you want to heave. 5. If I can get 4 kids and myself dressed and to Braille by 6:55 a.m., so can the Braille teacher. 6. and lastly, there is too much to do and too little time.
As most of you know, some times i have these enlightenments about life for which I feel the need to share. My last enlightenment came when we were in Boston 2 years ago; I guess we were over due!
Luke was student of the week last week at school. He loved it and as with this honor, he had to create a science experiment. We did the erupting volcano with base/acid releasing carbon dioxide. HE LOVED IT and we had so much fun making the volcano and erupting it ...over and over and over and over...
Luke is feeling well. We are heading for an MRI on Tuesday and a vision eval Thurs along with an oncologist appt Thurs as well. I am hoping for good news so as to avoid or put off a surgery, but I know no matter what we will find the strength to press forward.
Too many times this year, lives of young fighters have been cut short. Too many. Too close. Many still have reached a threshold of fighting and they seem to take on step forward and 2 back. What is happening here??
So onward and upward. Thanks for your love and prayers, always.
Nicole
Friday, September 15, 2006 2:46 PM CDT
Believe it or not we are actually getting into a routine around here -- at least for the kiddies.
Luke is doing really well in school and already thinks 2nd grade is "too easy". We are very happy with his abilities at this point; he restarted Braille and really has retained quite a bit since taking a break for the summer. He is also still working very hard on his orientation and mobility and his German lessons.
This may be the last picture I post of Italia as I do not want to take all the thunder away from Luke ...guess she may need her own website!
Everyone is doing really well taking care of Italia and even Monte is quite smitten with our little doll.
I am still reeling from little sleep and coffee is my new friend (sorry Italia!)
There are a lot of things happening during September to celebrate Pediatric Cancer Awareness and I applaud all of those who are making these things a reality. Too little is being done nationally to celebrate this month. I will not be happy till M&M is making gold M&Ms for September (like they do for October and breast cancer), and until Oriental Trading has a full page spread dedicated to gold items for pediatric cancer. So wear your gold ribbons and help raise awareness.
Blessings to you all -- we will keep you posted as our next MRI comes around...
Love Nicole
Monday, August 28, 2006 8:13 AM CDT
Italia at 1 week old with good ol' Pooh Bear
Luke, Alexis & Isabella continue to dote on their little sister. We are establishing a routine, although this week with school starting will be the real test!
We have decided to postpone Luke's surgery till after the next MRI and then maybe discuss surgery in late December/early January. We hope this will give us time to adequately research this decision, gain a little more insight based on the next MRIs and give Italia a little time to grow before we are hospital bound with Luke.
Thanks for your continued love, prayers and well wishes.
I am feeling great; Italia is growing each day, and for the most part we are doing very well.
Blessings to all Nicole
********************* Italia Katharina Ronco 6 pounds 13 ¼ oz. 21 ½ “ long Born: Sat, Aug 26th 3:24 pm.
Monday, August 21, 2006 4:09 PM CDT
Well today is Italia's due date but she does not seem to be coming.
Alexis is disappointed as she really was hoping her sister would be the ultimate birthday present. She settled for Coconut, the American Girl dog.
Things here are calming down a bit. We finished our Kick for Kancer last week which after a year of preparation landed on the most beautiful day. The kids had a great time, and I think so did the parents. We hope to post some pictures on the Pediatric Cancer Foundation of the Lehigh Valley website soon (www.cancersupportgroup.org). But, we did get a little news coverage: http://wfmz.com/cgi-bin/tt.cgi?action=viewstory&storyid=19164 you can click "watch video" at the top of the page.
And, I officially finished out my work schedule of events as planned so now I can try to really get ready for the baby's arrival. As a good girl, she at least held out to allow me time to finish those things on my list.
Luke continues to do well. Yesterday I was reading his journal from his diagnosis and first surgery. I cannot believe sometimes I ever made it through those days, pregnant with Isabella. It was the scariest days of my life and the most emotional. It tears me up to think of going back there again with another sugery and taking this beautiful little man who is so full of life right now and possibly setting him back 1 year or more in therapy.
Plus, all the risks that go with any surgery -- it is hard to envision another 4-5 hour surgery waiting for word and then the aftermath.
So, to be honest we still have not made a decision. We are really motivated to go ahead with it to try our best to get the damn thing out or at least as much as wel can, but as with all decisions in this arena, I am full of apprehension for not knowing how things will turn out, what the effects will be for Luke and the ultimate right choice. I joke, but truthfully, I am still praying for a sign.
We do however continue to be blessed with lots of love and well wishes constantly. We were humbled again at a recent passing of a beautiful little baby I mentioned before in our posts -- Madison Rose. She was the little baby we had the privelege of meeting 1 day after the birth of her and her twin brother. Her parents had to bury their daughter while they celebrate the continued improvement of their son, so he can come home. These situations always make me try to picture that day -- I just cannot/will not.
It is a crazy ride. Some days I wonder how we survive -- but God willing, we do until another day. So, I will continue to pray for a safe arrival of Italia, for wisdom in deciding our next move with Luke, and for patience and guidance in this parenting job which is getting tougher and tougher but more rewarding each day.
Keep all our fighting families in your prayers including Janelle & Allen, Lauren, Kyle, Jordan and special prayers for Timmy's Mom and all our other friends.
Nicole
Thursday, August 10, 2006 7:42 PM CDT
Today we got to meet a beautiful little baby -- no it was not Italia yet -- but a friend who just delivered twins at 31 weeks. We met the girl twin, Madison, a mere 4.1 pounds of love. So precious and beautiful. She has a heart defect and could use lots of prayers for an upcoming surgery and recovery.
We too could certainly use a few extra prayers. We met today with the neurosurgeon to discuss Luke’s increasing cysts. The neurosurgeon feels confident now that a window of opportunity has arisen where he may be able to enter Luke’s brain from another direction accessing the tumor and possibly debulking a great portion. While this sounds like a blessing, and it very well may be, it of course comes with risks such as stroke, hormone loss, total blindness. Plus, a new surgery with related post surgical complications.
The decision is weighing heavily on our minds as we being to evaluate the pros and cons and decide what is best for Luke and then the timing that will be best for our family.
We could use some extra prayers of guidance in this decision process as we are torn as to what is the best route.
On a more decisive positive, Luke’s weight is down 5.2 pounds in 4 weeks. The doctor was amazed and very happy!!
Nutrition calculated that he is in the 25% for height (which has been his average) and really on about 2 inches behind his targeted height for his age. His weight is about 12 pounds above his target weight for his age, but now has him in the 75-90% which is down from the 95-100% previously.
We are so proud of Luke since as much as he sometimes complains about this "new eating style" he has not given me too much argument in the end. Plus he has worked up to 2 1/2 miles of walking 2-3x per week. OUTSTANDING.
Alexis will be celebrating an early 6 year old birthday this weekend, in light of the impending birth of her sister within the next 2 weeks. We are very proud of the little lady she has become too.
Love Nicole
Monday, July 31, 2006 5:52 AM CDT
ABOVE: Luke at the Opening Day for the Miracle League. He plays on the Orioles team, #7. Lexi became a butterfly! ********************************** Things here are moving along. I am down to my last 3 weeks and unsure if that is good or bad. At least while she is safe inside, there is less direct work for me to do. Some days when the kiddies are crabby, I am happy for that!
Luke is doing well. The big news is that last week at the doctor his weight showed he lost 4 pounds!!!
We have been working on this weight for only 3 weeks so this is great news. Now we need to continue in that direction or maintain. Luke is very proud of himself and I think that goes a long way in helping the process.
We are still awaiting word from Boston, which should be received this week. There was a mix up in getting our films delivered last week.
Philly is also considering some "interventions" relative to the arterial blockage and cysts. They suggested aspirin as a potential for this blockage to avoid a clot and we are meeting with the neurosurgeon about the ever growing cysts. Evidently the neurosurgeon found LUke's new MRI quite "impressive" in that the cysts are so large now he may have a better route inside.
Not just 2 years ago he definitely would not have even considered going in to drain them, now with their huge size, there may be a better access. I guess sometimes bigger is better. However, although I am holding out for our consult, I cannot imagine putting Luke under the knife again without the symptoms and the push because it is still quite dangerous. For this momma, it just gives me butterflies in my tummy even thinking about it.
We are also heading off to see the nutritionist in another week to show her our food diary and to gain any other insights we may need. I am curious to hear what she will say since sometimes the info is only as good as the ability to implement it -- not always easy with a 7 year old!
Life otherwise continues to move forward. Luke is meeting with the allergist today, locally which is a nice change of pace!
Also, I had a wonderful surprise luncheon shower at work last week for Italia. Since I never had a baby shower, it was not only a big shocker for me but a little flustering. My coworkers at PSLV are awesome and they did such a great job at providing me with a little normalcy! THANKS!
So, we are heading into the week of purported extreme temps and trying to tie up any loose ends before the baby and school. We will keep you posted on our next doctors' appts over the next week.
Love Nicole
Monday, July 17, 2006 7:32 PM CDT
UPDATE UPDATE: Thursday July 20th
Luke had his neuro-ophthalmology appt today and fortunately his vision shows NO CHANGE. His red eye issue is clearning up so they think it was viral. Also good news.
I FINALLY was able to get the films from Philly (crazy mixup in the file room) so I will be sending them off to Boston for their opinion, hopefully next week in Brain Tumor Clinic.
Thanks for your positive thoughts & prayers! NICOLE *************************** Things here are moving forward. Luke is still continuing well on his new "eating" plan and has lost one pound by todays measurement. YEH.
More important than losing the weight is we are not gaining any, he is content and we are surviving. Luke is not having any complaints and that is half the battle!
Lately he has been crabby though -- I keep calling him GrandPop because he is acting like a 70 year old in a nursing home complaining of bad food. It iritates him I find sometimes this reverse psychology has a way of playing out to my benefit.
Luke also developed a weird (go figure) eye condition as a result of adenovirus. No other symptoms but he has really really blood shot eyes. They are improving slowly, he has no pain or other issues, but it is distressing to see him each day with this condition. Add to this the fact that he LOVES to rub his eyes and we are really at a no win situation. Luckily, the doctor said it should pass in a week or so and we are heading to Philly for an eye eval this week anyway.
I am sure the chlorine in pools do not help either, but with this warm weather -- we are trying to fit that in too!
Otherwise, we are gearing up for school and the 8/16 KICK FOR KANCER (www.cancersupportgroup.org) as well as last minute details for the baby's arrival. I am on weekly doctor visits now and they are estimating a 7 pound baby. Sounds good!
Keep all our special friends in your prayers: Timmy's Momma, Kyle, Jordan, Jaclyn, Tom & Austin who are still riding, Janelle and her twins and as Isabella says in her prayers "everyone who is sick or needs help".
Love to all Nicole
Friday, July 7, 2006 12:53 AM CDT
UPDATE UPDATE Luke is doing very well so far with our new dietary eating. We were fortunate today to spend part of the day with 2 amazing young men, Austin & Tom. These guys are biking 5000 across America raising money for pediatric research through Rally Across America.
Luke was fortunate to be the Rally Child today on their stop in Philadelphia and we were so very very impressed with these young men giving of their time and physique to make a difference.
CHECK OUT THE PHOTOS -- and their website where you can follow their progress: http://rallyacrossamerica.com/
Luke's Rally Page: http://rallyacrossamerica.blogspot.com/ **************************** Well, I still do not feel like writing today but I guess all the anxious waiting folks deserve the news.
Luke's tumor has grown again with increased pressure along the Circle of Willis and midline shifting. The cysts have grown in and around each other, sort of like blowing bubbles into bubbles.
One of the arteries that branch off the carotid artery to form the first circle in the Circle of Willis is also completely shut off, we think presumably from the pressure of the tumor. The positive is however that the left is adequately filling the middle artery. However, this as with most things does increase Luke's chances of stroke; but we hope that no further arterial damage is done down the road in this delicate area.
Lastly, Luke again gained weight and the doctors are very very concerned about this increase in light of the hypothalamus obesity issue. They are interested in starting medication which although not geared toward eating disorders, has a side effect of suppressing appetites in many children. I am not ready for pharmacological remedies at this time so I am buying ourselves another month to try to bring the weight under control.
This is a very hard task. Many of you know already that I am the "gatekeeper" of food in the house and often this causes a lot of fights and crying with Luke. He just wants to be like normal kids eating etc. Unfortunately, his body does not work like other kids and his brain is making him hungry all the time.
We have started a food diary to get a greater handle on his eating and hopefully this combined with increased exercise will help. Again though this is a challenge because Luke needs motivation and direction to get physical. He does not like to do anything by himself so it is a family affair and often the girls again are feeling the strain.
On the plus side, my ultrasound today to check on Italia showed that she is growing fine. My small measurement seems due to her positioning very low in my pelvis already. She weighed 4pounds 12 oz today, putting her in the 43or weight. And yes, again we confirmed she is a GIRL!
So, I have been depressed a bit, overwhelmed a lot and tired of fighting and planning and prepping every moment of my life. But, I refuse to let this tumor win so I guess I have stepped back up to the plate. Luke and I have been having a lot of dialogue about his situation so he can really been active in finding the food solutions with me. This is still quite a challenge for a 7 year old and a tiring Momma of 3 1/2 kids but I am accepting this station in life.
So, if you have any kid friendly low fat low cal food suggestions or menus, send them my way. As you know Luke is quite a picky eater so this poses a grand challenge, especially during the season of picnics!
Thanks for checking in on us -- I promise to write more when I feel up to it. I need to get the kids outside for some exercise again.
Love Nicole
Sunday, July 2, 2006 11:18 AM CDT
So much to share -- hope your sitting!!
Last week a good friend hosted Zack Mills at his home for a meet & greet prior to a golf outing for Penn State. Luke obviously had no idea who Zack was, but left feeling quite a kinship for a new athletic hero. The autographed picture will shortly be taking its prized spot in Luke's room.
Zack was an amazing individual, the kind of guy you hope your daughter brings home (darn, if I was only a little younger!!). I was so impressed with this young man and thrilled to share the day with him. THANKS ZACK -- You Rock!
After this adventure we headed to Camp Sunshine for Brain Tumor Week and again the week was amazing. The rain that hit the Lehigh Valley with a vengence spent a little time in Maine as well, but did not stay long.
A full house at Camp, we loved reconnected with our friends of years past as well as meeting new friends. I am always struck by the irony of Camp. You think of all these families with children who have a brain tumor and your gut thought is -- how horrible, sad. Families who don't return this week because their child passes away -- tragic and unfair. However, the beauty of Camp is that it is a safe haven. A retreat from life with brain tumors -- I love not having to explain life with a brain tumor but rather sharing solutions to life, venting about how frustrating it can be, how joyous it is, how amazing our kids are, how some days, we have no idea what we are doing. As I always say, Life in Holland can be beautiful too. For those who share this journey with us, who also live in "Holland" or who just volunteer to visit us from time to time, THANK YOU THANK YOU THANK YOU!
Life at Camp is beyond words but when you see your kids having fun -- as kids are suppose to, brain tumor and siblings alike -- you really get it. The few hours or time you can steal away while all the myriads of volunteers entertain the kids is priceless.
At the end of Camp, we have the Celebration Show which as it sounds, is a celebration of the week. Each age group puts on a "show" and this year, the teens did a few varied skits and spoofs. One that struck me was: $90 for gas to Camp Sunshine $20 for a Camp Sunshine sweatshirt Seeing the smiles on the kids & volunteers faces, PRICELESS
Lets not forget the coveted Love Cup also which puts various adult/parent groups in fun competition for the trophy. Last year, my group took a sad second place to John's team. This year, we triumphed and the HAPPY CAMPERS brought home the gold. SILLY FUN!
So, we have returned home to Whitehall on little sleep driving through the night up and back to Maine. We have unpacked and almost completed the endless post vacation laundry duties. Monte has settled into our return as well and the pictures finally have been downloaded.
So what is next for us????? MRI this week with doctors appointments hopefully will pave the way for a positive summer. The kids will enjoy the myriad of activities and adventures we have planned and overall the sun will continue to shine.
Despite my crazy dancing and karoke at Camp, Italia is still safely tucked away growing in my belly (see LARGE belly in picture) and the kids are getting ever more anxious for her to come.
Enjoy the pictures. Please continue to keep us in your thoughts as this week of "news" is coming. Please also pray for the other families who struggle in Holland each day and those who are struggling harder than most...Eric, Kyle.
We have had a lot of families recently with relapses or progression and we know all too well this devastation -- please say extra prayers for our Camp Sunshine families to find the strength they need each day to keep going! Thanks to all the volunteers and families for refreshing our spirit yet again!
Love to all!
Nicole
Monday, June 5, 2006 11:48 AM CDT
Well as the pictures detail, we had an amazing Memorial Day Sunday with Sylvia and her family at the farm. (Above picture is Michele with Luke & Isabella). Special guests Linda & Pat were a welcome sight and Luke just adored all the attention and special gifts for him. He hasn't stopped talking about all the pressed pennies and even the penny that was pressed on the railroad track.
Even the girls were treated to a wonderful gift box. Thank you so much Sylvia & Family and Linda & Pat.
Things here are still crazy busy. School is winding down this week and there is lots to do. I have a few projects for work that I am trying to attend to with my ever growing belly and my increased tiredness. This poor baby has had her share of coffee to keep Mama going!
We have also enjoyed meeting some neighbors in the our neighborhood now that the weather is nice and this is truly an important factor for the kids.
At the end of the month, we are heading to Camp and everyone is really looking forward to catching up with friends and relaxing as only you can at Camp Sunshine.
Thanks for all your thoughts and prayers. Luke continues to keep us on our toes but we wouldn't have it any other way!
Nicole
Monday, May 15, 2006 3:02 PM CDT
Well my sister beat me to the punch today -- Today is Luke's Anniversary of 4 years since diagnosis.
John thinks it is a weird thing to be aware of in an anniversary type remembrance but I know it is important because 4 years ago we almost lost our precious Luke.
4 years ago, we were rushed via MediVac to CHOP, which is an hour away, but we arrived in 13 minutes. That first day is forever etched in my mind, as well as the 3 weeks following which were filled with surgeries, meetings, talks, recovery, pain, tears, and sadness.
I remember the weekend before Luke's surgery and all the family coming to visit because we did not know what the surgery would bring and if Luke would come out of the surgery alive, intact and still Luke.
I remember that look on Dr. Sutton's face when he had to tell us that unfortunately they could not remove the tumor, it was hard and very encased on vital structures; that to remove any part of it would leave Luke in a much different place, possibly even vegatative.
I am thankful for Dr. Sutton's skillful hands that gave me my son back that day. I am thankful for his oncologists that kept guiding us through choice after choice of chemo that never worked and I am thankful for Anne Brogan and Dr. Yock in Boston and all the staff up there who helped us through that very hard time of protons.
I am thankful for Luke's therapists who helped he gain his motor skills back and walk and run again. I am thankful to Rosemary his vision teacher for helping him remain on target visually despite all the visual losses he suffered and who still brings him the joy of Braille.
I am thankful to Jim his mobility teacher for working so diligently with Luke this last year and bringing him so far from that place that he hurt to walk 10 steps and now he can walk 1 1/4 miles.
I am thankful to the endless specialists I spoke to and still contact for second opinions or follow-up information, to his amazing team at CHOP, to his nutritionist, the school who has been supportive to their ability to help us attain services, Margie Durkin and her team, St. Stephen's and St. Elizabeth's, and tons of others who are in the mix.
We are so thankful for Luke's Thon friends and his Penn State team, his Chemo Angels, all those who sent him cards and gifts during the rough days, and especially Luke's family, his extended family, his friends, all who pray for Luke regularly and passionately, and his sisters who have helped keep us all grounded by their silliness and their love and their keen unawareness that there life is normal despite the craziness of their lives from the day Luke was diagnosed. Thanks girls!
God Bless you all and our friends who struggle each day with their own battles against pediatric cancer.
Love Nicole
Monday, May 15, 2006 3:02 PM CDT
Well my sister beat me to the punch today -- Today is Luke's Anniversary of 4 years since diagnosis.
John thinks it is a weird thing to be aware of in an anniversary type remembrance but I know it is important because 4 years ago we almost lost our precious Luke.
4 years ago, we were rushed via MediVac to CHOP, which is an hour away, but we arrived in 13 minutes. That first day is forever etched in my mind, as well as the 3 weeks following which were filled with surgeries, meetings, talks, recovery, pain, tears, and sadness.
I remember the weekend before Luke's surgery and all the family coming to visit because we did not know what the surgery would bring and if Luke would come out of the surgery alive, intact and still Luke.
I remember that look on Dr. Sutton's face when he had to tell us that unfortunately they could not remove the tumor, it was hard and very encased on vital structures; that to remove any part of it would leave Luke in a much different place, possibly even vegatative.
I am thankful for Dr. Sutton's skillful hands that gave me my son back that day. I am thankful for his oncologists that kept guiding us through choice after choice of chemo that never worked and I am thankful for Anne Brogan and Dr. Yock in Boston and all the staff up there who helped us through that very hard time of protons.
I am thankful for Luke's therapists who helped he gain his motor skills back and walk and run again. I am thankful to Rosemary his vision teacher for helping him remain on target visually despite all the visual losses he suffered and who still brings him the joy of Braille.
I am thankful to Jim his mobility teacher for working so diligently with Luke this last year and bringing him so far from that place that he hurt to walk 10 steps and now he can walk 1 1/4 miles.
I am thankful to the endless specialists I spoke to and still contact for second opinions or follow-up information, to his amazing team at CHOP, to his nutritionist, the school who has been supportive to their ability to help us attain services, Margie Durkin and her team, St. Stephen's and St. Elizabeth's, and tons of others who are in the mix.
We are so thankful for Luke's Thon friends and his Penn State team, his Chemo Angels, all those who sent him cards and gifts during the rough days, and especially Luke's family, his extended family, his friends, all who pray for Luke regularly and passionately, and his sisters who have helped keep us all grounded by their silliness and their love and their keen unawareness that there life is normal despite the craziness of their lives from the day Luke was diagnosed. Thanks girls!
God Bless you all and our friends who struggle each day with their own battles against pediatric cancer.
Love Nicole
Friday, May 5, 2006 11:52 AM CDT
Very astutely Pat & Linda noticed the failure to mention the pressed pennies. Well, the adventure will be told.
Fortunately for my wallet this trip, Luke & I had managed to secure most of the pressed pennies in Boston during our time there during protons. However, Aunt Sue printed off the official penny list of all the pressed pennies in Massachusetts and Luke noticed 2 from the downtown Boston area he did not have in his collection.
So, on our way out of town we headed to the Prudential Center to find the penny. After 25 minutes of hallway after hallway, ask upon ask, we realized that there was no pennies there. In fact, no one had ever heard of the pennies being in the building complex (which is really large!). Luke was heartbroken, saddened, dejected. He insisted we check the basement, to which we only found a drycleaner, a barber and parking. Forlorn we headed back to the car to which Luke joyfully espoused the Aunt Suey was "going to get it" for leading us on a wild goose chase.
So, although I have not shared the news with Luke, we are excited to see what Pat digs up in our favorite city.
Luke continues to do well. The warm weather has provided more opportunities for exercise for him and although recently frustrated with his training wheels, he is hitting the roadway on his bike and hopefully making some new friends along the way.
School will be winding down in about 1 month and I am unsure what adventures we will be planning after that time; but for my own sanity I better find something else as the thought of Luke drolling "I am bored" for 3 months makes me cringe!
The kids are having an overnight adventure with their aunts Saturday night and have spoken of nothing else for days. I personally am looking forward to an uninterupted night of sleep without someone crawling up in my bed in the middle of the night or waking me up at 5:30 a.m. I may even read a book -- imagine that!!
Otherwise, life is moving along at the Roncos. We are still in a pickle over the name of our upcoming daughter but seemed to have narrowed the list slighting to: Adrianna, Lilly and Reese.
John vetoed most of my names and the kids the others. Today I made the mistake of looking on line for some unusual baby girl names and found a bulletin board where people actual post proposed names and then 50 others comment on them...pages and pages...as if I have that much time. I think I shall ride it out and see what comes to me over the next few months unless we agree on one on our list already.
Thank you to Kristan who listened to my baby rants after I went shopping to cross some items off my list --- there is so much to buy yet YIKES.
Blessings to all our troopers who are fighting every day. Thanks for all the prayers that are keeping us strong and Luke doing well and extra thoughts and prayers for Timmy's mommy during her grieving and Kyle during his rehabilitation.
Nicole
Friday, April 21, 2006 8:33 AM CDT
We are home safely from Boston and luckily have good news to report.
First I want to thank our good friends Jan & Michael (with us in the picture above enjoying dinner) who drove in to spend some time with us, as well as my sister Suzette who took time off work, endured the "joys" of my 3 kiddies and Luke's early mornings to be an AMAZING help to me in Boston. Thank you Thank you.
Now onto the news --- Luke's MRI showed similar news as in December with some changes taking place including some growth in cysts and some shrinkage of others. But the good news of all that up and down is that the solid portion of the tumor is getting smaller. The team in Boston feels very good about his progress over the last two (2) years since protons, and are confident that we are heading in the right direction. I of course am thrilled to share they confidence but still keep hoping those cysts disappear too!
Also on a good note, Luke's growth hormone functions which were quite low in December seem to have improved greatly. ALthough still not "normal" they fall only slightly short of or on the low end or normal. What has brought about this positive change -- we do not know but let's not argue with progress!
Lastly, I especially am very aware that Luke has been doing the best ever all around. Since last year, his endurance has improved and the pains in his legs has disappeared. He has been conditioned to enjoy and excel as his orientation and mobility and really this has helped him make great strides in his gross motor progress -- thank you Jim!
The team in Boston also agreed that Luke is looking very well and they are pleased with his weight maintenance as well as the fact that he grew a few inches since last year. Although Luke left Boston with an ear infection and no more pressed pennies, he did find some new PEZ dispensers he did not have and ate like a KING! What more could you ask for when you are 7!
Thanks for the continued prayers. Obviously, they are helping tremendously with Luke's progress as well as supporting us parents who still find ourselves waiting for the rug to pull out sometimes.
I attended Timmy's visitation service on Monday evening. Thank you Sylvia for attending with me and being my support. It was very hard for me to be there and for this I feel quite selfish. All those beautiful pictures of a little man 10 years old with an amazing smile and bright blue eyes -- but, his family is the most amazing and his mother is a pillar of strength and all that is important. She loved her little angel every minute of her life and even in death she continues to celebrate his life, his battle and the differences he made. I applaud you Susan for you are a truly AMAZING woman and I am so happy to have met you and your family and to have shared albeit a small part of Timmy with you. Please drop Susan notes of support if you can at Timmy's website: http://www.caringbridge.org/nj/timmyp/ if you would like to.
Thanks again to everyone for all that you do! We are so appreciative and thankful for the blessings we are experiencing right now.
Nicole PS: The baby continues to grow and move around a lot. I think the girls are really taking an interest in their sister as they helped me shop recently and Alexis always remembers to say goodnight to her sister in mommy's tummy. Now, if we could just agree on a name!
Monday, April 10, 2006 12:01 AM CDT
Luke, Alexis & Isabella escaped the rain on Saturday for a fun filled morning with the GREATEST, Sylvia. They enjoyed Heroic Hercules and the Twelve Terrific Tasks and then a treat to lunch at McDonald's.
This diversion from the kids provided John and I an opportunity to visit John's grandmother, who we affectionately refer to as "Grammy Bert", who recently entered the hospital on her 96th birthday with pneumonia.
We enjoyed our visit with her greatly but unfortunately, her conditioned worsened over Saturday night and she passed away early Sunday morning.
We are very saddened by her loss but celebrate her amazing life, spanning 96 years -- she saw so much in her life, including many progresses and important changes. AMAZING.
Luke has taken this a little hard, losing his grandfather last year before Christmas and his great grandmother this year shortly before Easter. But all things eternal -- we know she is at peace.
Thanks for your thoughts. As we gear up this week for Easter and next week we are in Boston, we are mindful of our friends like Timmy and Kyle who have big battles currently at their feet. Say some extra prayers for those guys and their families.
Nicole
Wednesday, April 5, 2006 3:04 PM CDT
IT IS A GIRL !!!
Looks like the new baby is going to be a girl much to the kids disappointment. But as I explained to them, God gave us this baby so he obviously knows best what we need in this family! Somehow they were not buying it though...
Luke's vision eval last week was great and his report was STABLE which is always a nice word to hear. So after his blood work comes back hopefully by next week we are all set to head up to Boston for our yearly trek.
Keep storming the heavens for some GREAT news --
My belly is growing and things here are still crazy as ever --starting with the unwelcomed snow this morning. I am only buying spring maternity so the weather best warm up because lately I am freezing!
Keep all these special children in your thoughts and prayers especially Caitlin, Timmy and Kyle who have special needs right now.
Thanks again for your ongoing love and support.
If you would like to add your choice baby name to the mix, feel free to email us. We are compiling our proposed list of names.
Nicole
Friday, March 24, 2006 9:01 AM CST
Luke's endocrine appointment went well. We are happy to report that he grew 0.6 cm (not much but something!) and lost weight (down 0.3 kg) all since December.
Given our weight struggles, this is EXCITING news and Luke is happy with himself as well.
His growth hormone remains low which we were aware but hopefully we can put off any treatment for a while -- at least until his tumor is stable.
Luke also had been having some issues with his violin lessons the last few months -- disinterested, resentful and just not wanting to do it. I discussed it with him and we decided to stop lessons since it really was becoming more of a hassle making him go to which he would just get upset. THEN, surprisingly, LUke approached me the next day and said -- MOM, do yo have any pictures of me playing the violin. I said sure.
Luke said, Well I think I want to keep playing and not quit because I don't want to forget everything I learned. Call is reverse psychology or what but that was a very adult moment with Luke. Hmm...could he be maturing before my eyes?
Yesterday was also so sweet for sibling love. ALexis has been having a problem with her front tooth. It is slightly loose but more importantly it has been very painful and swollen. We went to the dentist yesterday and they believed it might be getting absessed but the x-ray did not show that. So, to avoid more pain and problems, we opted to pull it out. Alexis was so brave but in discomfort and pain after and Luke was crying because Alexis was crying and he just wanted her to feel better.
It brought me to tears---
So today it is quiet again and hopefully it stays that way for a few more days, weeks, months...
Thanks for the prayers. Pat & Linda thanks for the pennies -- LUKE WAS ECSTATIC!!!
Nicole
Tuesday, March 14, 2006 3:46 PM CST
Yesterday was such an amazing day for me.
Luke although complaining of yet another headache had his Braille lesson as usual and I was allowed to observe. I was so blown away at his ability and skill not only in reading Braille visually as you and I might read a page in a magazine, but also reading with his fingers and using a Brailler. For those unaware, Braille consists of not only the Braille alphabet based on a 6-dot system, but also over 250 contractions or shortened versions of common words. Luke is learning all of this and using the Brailler as you or I might a typewriter to write in Braille.
But what is so amazing is a Brailler only has 6 unidentified keys representing the 6-dots. It was awesome.
Then Luke did amazing in his swimming lesson which not only helps his confidence in overcoming his fear of drowning, but also is super exercise for his body and spirit. He treaded water for 2 minutes and is really improving in his floating and swimming/breathing.
I was so proud of him yesterday and amazed at his gifts despite his deficits. When I tucked him into bed, I just stared for a few extra minutes, touching his puffy cheeks and his beautiful face, catching his smile when you try to kiss him over and over and his rebuffs it because he is "too old for that mushy stuff". I love this little man more than life and yesterday was just awesome.
We are heading to Boston in one month and hope to find the cause of the headaches along with a hopeful postive checkup in brain tumor clinic.
Until then, we will continue to pray for more of the warm weather we had this past weekend, less headaches, healing for our friends who are having a rough time right now, and some uneventfulness in our household.
Nicole
Monday, February 27, 2006 8:04 AM CST
So another week has passed and it has been nice and uneventful -- yeh!
The baby news has spread like wildfire and my tummy has expanded 2 fold in the last week. The kids are so excited but the next 6 months of waiting is hard for them. I am still having good days and bad but the good are taking the lead -- finally.
Luke is feeling well finally having put the rash of illnesses hopefully behind him. The weight still remains a problem and we are struggling to find a balance with Luke in this regard. Hopefully, when we finally get some warmer weather it will make all the difference in his activity level.
Luke is still swimming with Alexis and I hope this will also be an exercise boost for him as well.
Please keep Timmy in your prayers and his amazing Mom during his difficult time and thank you for your ongoing prayers for Luke and his battle as well.
Nicole
Monday, February 20, 2006 7:41 PM CST
Things have been about the same here this week. Luke's doing well although we are having a constant battle with the weight and of course with that comes the flooding of tears and breakdowns from Luke. I am trying to empower him without making him so obsessed with the weight issue but right now it is getting dangerous and we really need to work to maintain that. He gained a few more pounds and I just want to cry.
He has been having some head and belly pains too last week, but I am happy that what he ended up with was strep throat. Funny how I am always happy for that diagnosis --
Isabella is recovering from her cold and the sore nose is making her another cranky girl. Alexis is just at a whining stage so at any given moment all 3 could be in tears. The joys of motherhood.
Today we escaped for a few hours to see a preview of an upcoming play at the local children's theatre with some other families and then enjoyed lunch -- some normalcy.
of course since it was a day off, we also had a million errands including the 1 hour I spent waiting to get my blood work done -- extra cranky on the kids.
I constantly feel that there are just not enough hours in the day to do what needs to get done so as I write this, I am still working on the endless laundry that the Ronco family creates.
This weekend we spent at State College for Penn State's Dance Marathon where they raised over $4.2 million dollars for Penn State Hershey and the Four Diamonds Fund. Of course we are not a Four Diamonds Family and we do not treat at Hershey but I am always honored to be a part of this event as a Penn Stater, as a mother of a cancer survivor and as a proponent of childhood cancer awareness. There certainly is never enough being done to find a cure and to help our children and so any cause is a good one for this! I am also so proud of the dancers and the support they receive. Special kudos to Penn State Lehigh Valley's dancers: Heather and Luis, to our special friends the Pituch's and their daughters Meghan who was a moraler and spent many sleepless nights in preparation and an entire weekend on no sleep and to Michelle who donated her beautiful red hair to Locks for Love. FOR THE KIDS!
Luke, Alexis, Isabella, Aunt Sue and I made t-shirts to wear to THON and we decorated them with TEAM LUKE as well as different notes of support. I put "FTK" on mine and as typical Luke he tried to read it "footka?" he questioned? WE all laughed so hard until I explained it stood for FOR THE KIDS -- then we laughed again.
Enjoy the THON pictures (when I post them!) --most have Luke with his water pistol soaking each and every person on the dance floor-- and thanks for your continued prayers -- I ask for special prayers for our friends Kyle and Timmy.
Nicole
Tuesday, February 14, 2006 9:19 AM CST
I have been a bundle of nerves lately -- so much is going on and so much I want to share but sometimes it is a good versus evil. You want to share but not to depress, not to overwhelm, not to gloat. My stomach has been in knots with so much going on from all different ends, I just realized that I need to pen it all down good, bad, indifferent.
First on a good note -- we are home from DISNEY and what a great time we had. The weather was wonderful, cooperative and the kids had a great time. All my kids are so different sometimes it was a battle of wills to see who could keep whom in line. Luke was OBSESSED with getting his pressed pennies and By George, we got A LOT. Of course knowing Disney and having the master list, there are still a ton of pennies left to find and press but we had to keep Luke under some control. HAHAHAH
In addition, Luke also enjoyed disecting the magic telling us how everything worked and how it is not real Mom. I think he is asserting his maturity a little, that he is not going to be fooled by childish things. But oh, Luke I plead, enjoy the magic even if you fool yourself only for a day. That is the beauty.
Everyone enjoyed meeting some new characters and the pleasure of not having to wait in lines for those we have already seen a million times. The Incredibles were an intersting mix this year.
Everyone loved the Hoop-De-Doo this year and especially seemed to get a lot out of it -- must be an age thing. The kids were put front and center again when John was selected to be teased by the buxum blonde with the high voice. Go figure! They enjoyed the food and the knee slapping foot stomping fun culminating in a washboard spoon jingle.
We ate A LOT and now are trying to help Luke lose a little of the weight that snuck up on him despite all the walking. And boy did he walk. I was so happy that he did not complain at all about a stroller and many times was "running" ahead of us. What a joy to watch --finally.
Back home Monte missed us and the kids missed him too. Last week we informed everyone one (well almost -- some will find out today) that we are adding a new Ronco to our litter -- I am expecting in August. Funny as it was I showed Luke & Lexi the ultrasound picture and asked them what it was -- a Penguin Luke yelled. Then he thought it was his brain...then I showed them the features of the head body, arms, legs and they thought is was perhaps their baby picture. Finally we got to the part of Mom is having a baby and the noise and excitement was crazy and loud and amazing -- culminating in an argument over what name they were going to pick. YIKES. So yes, my sickness turns out to be the 9 month variety and hopefully the sick part ends permanently soon and the fun begins.
We are heading off to THON this weekend which is Penn State University's Dance Marathon to raise $$$ for the Four Diamonds Fund at Hershey Medical Center for families of children with cancer. This will be our 3rd year participating but as always it is a bitter sweet. We lost 2 friends last year ages 12 & 14 to brain tumors, another friend continues his fight and yet another is home in hospice, age 10. Each day as I read their caringbridge sites I am a blubbering idiot of tears. So much possibility, so much strength, sometimes no choice.
But I guess that is why I try to support things that help make a difference and why I continue to work within our Pediatric Cancer Foundation of the Lehigh Valley to form a bond of parents in similar situations and why I continue to read all these caringbridge sites to remind myself of the greater purpose.
There have been several days when Luke has complained about his head or his belly this year already. Is it the pressure from the growing tumor? Is it just Luke? So many questions, no answers and just waiting and prayers.
We are scheduled to head up to Boston for Luke's annual review in April -- a 3 day marathon of tests and appointment hopefully bringing some good news. The waiting can be the hardest part.
So, the good and the bad, the amazing and the very sad. Thank you for your continued thoughts and prayers. Please say a few extra for Timmy and Kyle.
Enjoy the Disney pictures!! Love to all. Nicole
Wednesday, January 25, 2006 11:23 AM CST
We are in count-down mode till Disney. Grammy & Pappy left today with our luggage in tow and so we just need to catch our plane this weekend and sunny Florida here we come.
Luke & the girls have already planned Day 1 -- POOL!
The weather has been in the high 70's and low 80's so hopefully they will get lots of pool time!
I personally am just looking forward to warming up.
Things here have been a little chaotic lately and we need a fresh perspective that we hope Disney will provide. Luke is still feeling well but we know that is no guarantee that all is well. With the increase of the tumor size, we are watching for any pressure symptoms but so far Luke has just been feeling well and we are thankful.
THON is right around the corner and we are excited about heading up to Penn State to cheer on our dancers this year again.
Keep our special friends in your prayers as they are having a bit of trouble these days: Lauren, Kyle, Timmy and pray for our newly diagnosed friend Laura who is having a lot of pain right now.
Nicole PS: The above picture is the kids attacking Aunt Pam -- but she loves it!
Friday, January 6, 2006 12:02 AM CST
Finally - a week later I find the time and energy to write about Luke's results. Unfortunately, I have not been feeling well so most things have been a struggle.
Enough about me...
Luke's MRI showed overall growth. However, most of the growth was seen in the cystic portion and the solid portion showed shrinkage. There is a little more of the T2 flair that scared us over the summer but overall, we are thinking this is pretty stable. Luke's tumor, like most, is not a perfect science and change although potentially bad could just be a preface for good. That is what we hope. He has had some midline shifting as a result but Luke has no complaints and overall is feeling GREAT. That is the best indicator!
His vision was stable 20/25+1. Today we just learned that his hormone functions may be failing -- specifically his growth hormone which is low. All in all though we do not think this will need much intervention yet because of his age and failure to be stable for a year. Evidentally there is some question as to whether growth hormones promote tumor growth therefore, they like you to be out of treatment and stable for 1 year at least. We will get further information and see where it takes us.
Thanks for continued prayers and wishes for Luke. We are looking forward to DISNEY which is in less than 4 weeks and then THON in February. Mommy is busy trying to organize our house post move and hopefully will be feeling 100% again shortly.
Best to everyone. I will post a picture of Luke's Eagle room soon---what an amazing room this kid has and many thanks to his Aunt Judy for her artistic genius!
Nicole
Tuesday, December 20, 2005 7:28 AM CST
Luke has officially turned 7 and is on the final count-down till Christmas. Today is a very special day because after school he and Alexis are boarding a flight for the North Pole. I am a little nervous as they are traveling a lone but I am sure there are lots of elves on board to help them and besides, I get the parents shuttle to the North Pole anyway.
We will post some pictures about this fun event.
Otherwise, we are still unpacking and unpacking and hanging pictures and moving stuff around trying to settle into our new abode. Things have started to really fall into place and the children's schedule also is working out well.
Luke remains well and although we have a busy MRI week next week, we will enjoy the holidays with great family, friends and yummy food!!!
PS: OOPPS I FORGOT TO MENTION THAT ALEXIS FINALLY LOST HER 1st TOOTH on 12/18!! Love to you all and Happy Holidays.
Nicole
Monday, December 5, 2005 3:31 PM CST
Things here are moving forward - Luke and Lexi enjoy school, Luke is busy with his Braille, orientation & mobility, German and his violin (which is dreads). For some reason Luke is having a perfectionist sundry of moments where things that require more work i.e. violin, seem to have taken a negative role in his life and those that seem to come easy are much more enjoyable.
We are trying to work past it without letting him give up and sometimes that is more successful than others. However, I guess we are just happy to have some somewhat normal things to work through anyway.
Luke's health is well and his next MRI is after Christmas with an MRA. We will keep our fingers crossed till then, enjoy his birthday on the 10th and try to keep happy thoughts till Christmas and beyond.
Keep all our friends in your prayers, those who have lost their battles that there is comfort and support for the families.
Best Nicole
Tuesday, November 29, 2005 12:42 AM CST
Yeh, we have moved. Finally we have moved and it will probably take us another year to settle in but we are happy to have a home but forever grateful to our friend for extending his home to us during the interim period.
Our new address is below and we hope to finally get caught up on all those emails and phone calls that I have been delinquent about.
Luke is doing well, really well actually and had a good report in October. We are still working on our 'diet' to keep his weight in check and he is doing great with this as well. The girls are also settling in to their new bedrooms and Monte is finally happy to have a space to call his own as well.
I will update soon with pictures as our home internet is not yet set up!
Thanks for your constant love, prayers and thoughts.
Nicole
Thursday, November 10, 2005 6:10 AM CST
Wow, too much time has passed since I have written but truthfully, I do not get as much time at a computer as I did at home. One more week till we move -- I am sure the Whitehall Public Library will be happy as I seem to have set up a temporary Whitehall office there.
Luke & Lexi & Bella had a grand halloween. Luke was Shang from Mulan, Lexi was Ariel and Bella was Tinkerbell. I will post pictures soon!
Luke has been doing very well all around. He lost a little weight, grew a little, loves his Braille and has really started to benefit in endurance from his orientation/mobility work.
The commuting schedule is taking its toll on me but the kids love spending the extra time with Madison & Kolton and they have not complained at all.
We are trying to gear up for the move and keep in mind the holidays that are fast approaching. Luke has finally decided on an Eagles bedroom, Alexis is going with French Poodle Pink & Black and Isabella is doing purple/pink Tinker bell. We are all very excited about this new chapter once all the cleaning and moving and unpacking is over.
Montague has just begun a routine which will change shortly again but his loves running at the farm near where we live and especially with Riley and the horses. I am sure he will miss that!
So, I apologize that we have been off the radar for a while and not as diligent about phone calls and keeping in touch. Hopefully that will change soon.
Thanks Love Nicole
Friday, October 14, 2005 12:32 AM CDT
As many of you know, I serve as the President of the Pediatric Cancer Foundation of the Lehigh Valley, Inc.; a foundation dedicated to improving the lives of children with cancer and their families. We have been selected by the Mustard and Cheese Drama Society of Lehigh University as the recipient of their costume sale fundraiser for this year. If you can, please come support this event!!! Thanks Nicole FUNDRAISER
October 23 12-4pm: Costume Sale at Lehigh University
The Mustard and Cheese Drama Society of Lehigh University is having a huge costume sale on Sunday, October 23rd, from 12pm to 4pm. Our costume shop is cleaning out clothes, shoes, hats, props, etc. from previous Lehigh shows, and the more we get rid of the better.
We would like to invite you to come, and to please let everyone in your department know about it. Low prices, and all proceeds go to help the Pediatric Cancer Foundation of the Lehigh Valley, http://www.cancersupportgroup.org.
Please don't hesitate to reply with questions at inmac@lehigh.edu. We appreciate any publicity you can give to the sale, and we hope to see you there. Directions can be obtained through the Zoellner Arts Center website at http://www3.lehigh.edu/about/zoellnerdirections.asp
Alexander Senchak ASenchak@comcast.net (973.464.5654) President, Mustard and Cheese Drama Society
Thursday, October 6, 2005 9:33 PM CDT
Finally I will recount the days events with some simple words -- STABLE STABLE STABLE.
After 3 months of anxiety and anxiousness, we heard the most beautiful words today. Seems silly actually because realistically of course it is more complex than that given Luke's tumor but we will take it.
Some cysts have decreased, some have grown. They think the solid portion is slightly decreased and the questionable arm is DEFINATELY GONE. I think it sounds great but Luke's oncologist will only say he is pleased and would love it if it stayed stable like this indefinitely.
His vision was also stable which is excellent. His doctor is always in awe at the fact that Luke has any vision given the way his tumor is inextricably wound around inside on his chiasm and hypothalamus and carotid. Divine Intervention!
So we are happy -- we are finishing our packing and will be officially out of house on Tues 10/11.
The kids are driving me nuts because I am overstressed with everything in life right now so I hope for a little reprieve as we begin a new chapter.
Thanks for all your thoughts and prayers -- God is definitely looking out for his little man Luke!
Nicole
Friday, September 23, 2005 4:03 PM CDT
Luke is doing well and although we are in the home stretch for his next MRI, I am trying to be focused on the positives.
Today we learned the results of Luke's CRH Stimulation testing which checked his cortisol function based on adrenal gland production. Turns out he is now borderline adrenal deficient and therefore will have to be put on steroids for any illness. Believe it or not I have training to attend to learn how to properly administer the drugs and especially the IV version in the event of an emergency. Sounds like fun huh?
So, we are thankful that he is not so deficient as to require daily doses of steroids but of course, this latest news brings a new set of stomach ache.
Luke LOVES Braille and he vision teacher reports that he is such a joy because he is so eager to learn. This is great news since of course anything Luke loves is met wtih of course more concentration and overall pleasure.
WE are still packing like crazy and getting ready for our temporary move till our next house is ready. It is a little sad to see the walls bare and the rooms empty but we are excited about the next adventure for us all. If I survive this move that is...
Thanks for all your love and prayers. We are extremely busy these days so I apologize for not being prompt at returning calls or emails.
Nicole
Thursday, September 15, 2005 5:25 PM CDT
Seems like things come in waves ...
Luke is doing well but his MRI is just around the corner and of course, we are anxious. He started Braille and loves it, doing very well his teacher reports at tactile identification.
Mobility is still being finalized but Luke is adjusting to his busy schedule and the new pressures of 1st grade. He is doing well and although not always agreeable, I think he is having a good time.
Alexis is adapting well to Kindergarten too although she has a few days of sleeping during rest time for which we are trying to overcome.
Isabella has been identified as possibly having asthma, currently experiencing another bronchitis spasm and lower lobe pneumonia. She is much better and we can only pray if it is asthma, that she only has a mild case.
Otherwise, things are crazy as usual. Some changes at work have me in a pickle and keeping up with Luke's new schedule. We are also moving (locally) and we are busy with those every multiplying jobs and plans.
Thanks for continued prayers of well wishes and health and we will keep you all in our prayers as well. Luke has a CRH Stimulation on Monday and we hope it is normal and that his pituitary is still functioning properly in this regard.
MOre later Nicole
Tuesday, August 30, 2005 12:43 AM CDT
Well it seems that my latest update did not post. My silly self obviously did not save it properly.
It is a shame really, because it was an eloquent display of fine verbage at its best. So here is another try...
Anyway, Luke hates 1st grade. At least that is what he reported yesterday upon exiting the school. After all, someone moved his cheese and we all know what happens when you move the cheese. If he could have just stayed at St. stephen's for the rest of his academic career, including higher education, he would have been thrilled. After all, they are awesome.
But no, Mom moved cheese and now he must adjust. He has to make new friends, wear the uniform and then there is all that crazy work to do. Although yesterday his complaint was that they only did one paper the whole day. Just makes you laugh that silly man.
Otherwise, we are getting into a groove, and have a few day reprieve till Braille and Mobility kick in and then I really become a chauffeur/taxi service.
Yesterday was my anniversary and my husband came home with cannolis and roses. A true Italian he is...and it was awesome!
So, enjoy the rest of August -- keep us in your thoughts as we begin a new journey with Luke and await in anxious anticipation his next MRI in a few weeks.
Nicole
PS: I FINALLY REPAIRED ALEXIS'S WEBPAGE AND UPDATED ISABELLA'S. Links are below!
http://www.babiesonline.com/babies/r/rosierose/
http://www.babiesonline.com/babies/b/bellanicole/
Tuesday, August 30, 2005 12:43 AM CDT
Well it seems that my latest update did not post. My silly self obviously did not save it properly.
It is a shame really, because it was an eloquent display of fine verbage at its best. So here is another try...
Anyway, Luke hates 1st grade. At least that is what he reported yesterday upon exiting the school. After all, someone moved his cheese and we all know what happens when you move the cheese. If he could have just stayed at St. stephen's for the rest of his academic career, including higher education, he would have been thrilled. After all, they are awesome.
But no, Mom moved cheese and now he must adjust. He has to make new friends, wear the uniform and then there is all that crazy work to do. Although yesterday his complaint was that they only did one paper the whole day. Just makes you laugh that silly man.
Otherwise, we are getting into a groove, and have a few day reprieve till Braille and Mobility kick in and then I really become a chauffeur/taxi service.
Yesterday was my anniversary and my husband came home with cannolis and roses. A true Italian he is...and it was awesome!
So, enjoy the rest of August -- keep us in your thoughts as we begin a new journey with Luke and await in anxious anticipation his next MRI in a few weeks.
Nicole
Tuesday, August 23, 2005 10:32 PM CDT
Oh my how the days seem to slip away now. We are all doing well and things are moving forward.
Luke is finally fully recovered from the virus and the reaction aftermath. The girls (knock on wood) are healthy as well and we have started to finally enjoy the summer, albeit only one week left before school starts.
We saw SkyHigh at the drive-in which was really cool and mom loved as much as the kiddies. We visited one of Luke's favorate museums Easton Museum of PEZ and got some super cool really neat new Pez Dispensers. For Luke the Pez Collector, this is no small feat because he owns like a gillion pez dispensers. Isabella even found a Brat Girl Pez dispenser -- now that is quite a find! She now takes it to bed with her which is quite another story.
Mommy is still suffering a lot of migraines lately and of course, this does add a bit of chaos and high tempers in the house. I am unsure of the cause of this increasing condition, but of course my anxiety of my past is slowly making its way to the forefront. In college I suffered with migrained every day, just crippling until I found gave into narcotics that my doctor and I called "happy pills". Of course they cured nothing but sure took the pain away.
Alexis celebrated her 5th birthday this weekend with a aunt/grandmother tea party in her honor. We had a beautiful array of tea sandwiches along with Sunny Delight tea, Peach Tea, Hot Tea and coffee. Lots of cakes, including the one attached on the photos page herein and many many other sweets. YIKES. Luke joined us from the unofficial "guy" table. He is so funny!
Monte is doing well too although quite unpredictable. Just when you think he has got it and is the perfect dog, he eats your underwear out of the laundry or chews the trunk off a favorite toy. But, we love him all the same.
Thanks for your kind thoughts and well wishes. We have our school meeting this week and an appointment with the endocrinologist. We hope we work out all the details for Luke's braille and other services without much inconvenience and Luke gets a good report for his growth and hormones.
Already the anxiety for our next MRI is creeping up but I am keeping myself busy (go figure) with lots of other items that I barely have time to worry.
Nicole PS: Our Kick for Kancer was a grand success. Thanks to all our volunteers and our special participants! Pix are available at: www.cancersupportgroup.org
Luke begins 1st grade, Alexis starts Kindergarten, Isabella 2-day preschool. Wow, time flies.
Tuesday, August 9, 2005 6:04 AM CDT
Well, we were back to the doctor again yesterday. Luke developed an allergic reaction to the antibiotic he was taking and now has an epitherial multiforme reaction which requires treatment by Benadryl to avoid full body blow-up.
Luckily he is tolerating the Benadryl well and getting a lot of sleep (hahaha). The reaction has been confined to his inner thighs and legs mostly.
Stopping the antibiotic is just as good anyway since Luke does have some sort of herpatic virus which has caused intense mouth sores, especially painful on his tongue. There is also swelling up his gum line and his cheeks which has made eating a non-interest and even drinking has been an area of complaint for him.
We are pushing the fluids however and today he actually is trying spaghettio's for breakfast -- go figure.
I am busy finalizing details for our Kick for Kancer camp tomorrow and praying the rain just holds out till after the event. (www.cancersupportgroup.org). It always is a lot of work to pull these events together but when they happen, it makes me thrilled to do something for the kids and families.
Otherwise, we are just riding the wave of the last 3 weeks of school as the kids start on 8/29. Still some last minute school shopping needed to take place but otherwise, the summer has been quite interesting with little room to get too comfortable.
We had a great time in Baltimore this past weekend with no kiddies, just grown ups acting like kids. But truth be told, even after only 2 days I missed these crazy buggers I call my kids a ton. I wonder, however, how much they actually missed us when the girls cried because I went to pick them up from Aunt Pam.
Thanks for the positive thoughts and prayers!
Nicole
Tuesday, August 2, 2005 9:28 AM CDT
FRIDAY MORNING UPDATE: FINALLY -- Luke is finally turning a corner and this morning is feeling better. His fever is gone and although his mouth sores are increasing, his head pain and belly pain is so much better. He has a bounce again in his step and is not as weak and lethargic. YEHHH. Thanks for riding this latest journey out with us. ************* UPDATE: STILL UNSURE WHAT IS GOING ON WITH LUKE. Some friends indicated they know of others with a virus with similar symptoms...hope so. His fever is high and low--- last night high and then today nothing. We hope this is a sure sign of VIRUS. I got the ped to put him on antibiotics just in case and if this is running its course or bacterial, he should be feeling better in a day or so. If not, then we head to PHILLY for some more testing and shunt investigation.
Thanks for your prayers. We are all off to take a NAP!
************************* Things are ever changing around here
My migraines have calm down for the last 2 days but Luke has started to feel quite yucky. With the latest news and the swarm of uncertainty, this of course makes us very crazed.
He has a really bad headache and belly pain which just won't subside and makes him extremely uncomfortable. He has not even eaten since yesterday afternoon because although he is hungry he says he just cannot eat. Not like Luke at all.
Today he had a 99.9 degree temp in the morning so I hope (how crazy it this) that he has a virus. I doped him with some Tylenol and he is resting but he just looks pale and is not himself.
Yesterday we curbed the nausea with an old friend Zofran. This roller coaster ride is really starting to make me sick. I continue to pray for strength to keep a positive outlook and press forward but some days I just want peace and calmness.
Otherwise, we are trying to make our last minute plans for the end of summer. Luke and the girls are gearing up for school getting their "supplies" in order. We attended the CBTF Kids Cruise in NYC last week and although we headed out VERY EARLY, the kids had a great time. Check out the pictures.
John continues to work work work but we are trying to convince him to come out and play too.
Thanks for your thoughts and kindness. Keep us in your thoughts through this latest craziness.
Nicole
Friday, July 22, 2005 6:15 AM CDT
Things are moving along. Luke is feeling well and although we are still watching him like a hawk and still dealing with an uneasy feeling in the pit of my stomach, we are trying to be positive.
We have begun to utilize again some anti-inflammatory suggestions by Luke's nutritionist in hopes that if it is inflammation and edema this will help. She also told me that there is some new findings of some homeopathic remedies that have come out of a new study with some efficacy on brain tumors. This is good to know down the road if this is necessary. Let's hope not.
If you get a chance, you can check out the pediatric tile story that was written for Lehigh Valley Hospital http://www.lvhhn.org/services/ped-tiles.html . A long while back as a "therapeutic" project, a bunch of families and patients painted tiles at clinic. Turns out they put them all into a display wall which is really cool. I painted one of tulips and windmills. Huh you are thinking? That is my saving grace. That story written by a very wise woman ************ Welcome To Holland : by Emily Perl Kingsley c1987 by Emily Perl Kingsley. All rights reserved
Matthew and I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. ************ This is my attitude. This is what I strive for every day.
We have had a nice week. Luke has had his ups and downs. We saw Herbie at the drive-in. It was great. We have gone swimming and visited Aunt Suey and played with Jackie. Mom and Dad even snuck out for dinner with friends last week and Aunt Pam babysat.
This week coming, we are heading to NYC for a cruise on Thursday around the harbor. In a few weeks, will be our Annual KICK FOR KANCER sponsored by the Pediatric Cancer Foundation of the Lehigh Valley, Inc. (www.cancersupportgroup.org) and so that has been keeping me quite busy too. I am thankful to our sponsors who are enabling this to be a bigger and better event, and more important all our volunteers. Now if I could just delegate better!!
Thanks for the continued cards of love and support and for all those phone calls that have gone unreturned --- I apologize. I am catching up.
Keep all our friends and families in your prayers who struggle like us, especially the family of 3 year old Ryan who passed away almost 1 month ago, Katie, Kyle, and Declan.
Nicole
Wednesday, July 13, 2005 9:21 PM CDT
Well, the news is in...
Boston called tonight and I will try to explain this as best as I can. First off let me say, things could be better but they could also be a lot worse so we are smiling and moving forward.
Boston does not feel that there has been progression but in fact they feel that there is definately radiation effect upon the tumor site and optic pathway. Additionally, they are somewhat concerned about the pressure that the cystic growth around the tumor has put on the 3rd ventricle.
In layman's terms, this means that there is a lot of swelling everywhere from the protons, and an increase size in the cyst. Although this is a much better approach then full blown tumor progression we are only cautiously optimistic because the swelling on the optic pathway could still cause Luke permanent blindness and the pressure on the 3rd ventricle is causing a nonflow of fluid from this ventricle which could necessitate another shunt placement down the road in this area. Additionally, as the external cysts continue to grow space is at a minimum and as they say in the brain "it is all about real estate".
I asked the doctor how to we know for sure if this is progression versus radiation effect and she said to follow it closely and if it is progression it will become undeniably evident. Right now, however they feel this is "case book effect" and they are more worried about the ventricle and pathway pressure.
So, we are heading to Philly tomorrow for a vision eval and then will decide if Luke truly has experienced any visual changes (I think I have noticed that he has but then again Luke sometimes moves faster than he should in unfamiliar territory and is not always aware). If it is truly changed, steroids may be an option to try to decrease any swelling and avoid further vision damage and loss.
Additionally, we will continue a close follow-up to watch these other areas for "growth" or swelling or cystic changes which may necessitate another surgery to relieve the pressure or minimize the other damage to the structures in the brain.
I am a mix of relief and paranoia with such differing opinions and so much of an unknown. I am trusting that all your extra prayers are being heard and God is truly watching out for Luke and for our family. As I mentioned before, Luke is feeling really good lately and as silly as ever.
Come September, I am sure I will be anxious and afraid for the next MRI's reading but I am thankful for our strong support system to always keep us going. As the note on my refrig reads, I am convinced that life is really only 10% of what happens to us and 90% of how we react to it. Attitude changes everything so I am trying to keep positive and be proactive. So far, we think it is helping...
Nicole
Tuesday, July 12, 2005 8:08 AM CDT
Thank you to everyone for your kindness, prayers and phone calls. To those who I have not yet called back be patient, I have been otherwise occupied.
We are keeping our chin up and hoping for news from Boston tomorrow. But, at any rate, we know we will along with everyone else, love Luke forever, and not give up till we must. I think Vince Lombardi said it is not over till its over ---
Luke is feeling good and laughing and playing in true Luke style. He is loud. Crazy. Loud. Goofy. Loud. Silly. Loud.
We spent the day on Sunday at Knoebels and the kids had a great time. As he sat on the bumper cars I had a fleeting moment where I thought -- should he be doing this?---than I realized ABSOLUTELY.
So, we wil keep our chin up, our heads high, try to tackle what lies ahead and give Luke the best life he can have for as long as God has planned for him.
In the meantime, keep praying. We are seeing some visual changes already with Luke and his eating hits peaks and valleys where I think he is unsure he is full and keep gourging -- but we just need to be more cautious all around.
And a visual note to myself ---Let it be. I have a headache every day worrying and trying to keep order in this crazy household that my only advice to myself every day is to let it be. But most of you know I am a neurotic control freak so this is no small task.
Love to all -- Nicole
Thursday, July 7, 2005 4:31 PM CDT
MRI Results are in- I will be brief because I am not really in the mood to write.
The first bad news unrelated to Luke is that my Uncle Franz of Germany died. This is my mother's last living brother. Some of you may recall my past entry indicated my cousin was visiting -- this is his father so the timing could not be worse. My cousin cannot return to Germany for 3 weeks so the services will be postponed till his return. Keep my mom and her family in Germany in your thoughts.
Since the bad news keeps coming -- time for Luke. Luke has had some significant progression of his tumor down what appears to be his optic pathway on the right side. Additional growth has been seen also at his original tumor site. All in all we are unsure what this all means. We are getting a review by Dr. Liu (his neurophthalmologist) next week to see if there have been any measurable vision changes in vision and then we will see what to do. Unfortunately there is limited options because of Luke's past failures with chemo and use of protons. Options seem to be limited to VP16 or Vinblastine or experimentals but none of these the docs feel provide much promise for this progression.
Ultimately it will be this progression if uncontrolled that will end Luke's life. This was a hard reality to hear today and so we are will try to remain calm until we get the results from Boston's eval. I asked the doctor how long -- loaded question of course -- the best he could say was that it depends on the tumor, progression and the speed with which it grows.
I asked Luke in the crazy car ride home which took 2 1/2 hours (thanks Philly traffic!) what things he wants to do before he is 7. I hope he lives much longer than that but I am again changing my thought process back to Luke and his needs. If he lives 50 years, he will have lots of time to repeat these activities -- if not, I am happy that we start scratching things off his list now.
Topping the list with little surprise was Disney again, Hershey Park, and then a long pause... he is still adding I guess.
I am crushed today. Empty. Depleted. I feel as helpless as I did 3 years ago when the surgeon told us 5-10 years to live. I am going to try not to completely freak till we hear from Boston -- please storm the heavens.
Nicole
Saturday, July 2, 2005 11:56 AM CDT
We are home from Camp and neither John nor I have slept since Friday at 6:00 a.m. Good news is we feel pretty good; bad news is we will most certainly turn into monsters later.
The kids had yet another amazing time at Camp Sunshine and Monte survived his first week away from us.
There are so many emotions upon returning from camp - hope, sadness, joy, friendship, fear. Every year we think it will be our last so we that new families can experience camp, but every new year we just cannot wait to go back.
"We Wipe your tears Camp Sunshine, we calm your fears Camp Sunshine, we will be a friend forever "
There is so much to dish about Camp including spending the week with the honeymooners (www.caringbridge.org/ma/michaellaonosa)
My cousin from Germany is in town also and we are trying to unpack, mow grass, clean up around here and then attend 2 functions later. So, I am off to get more work done before I crash and will update later.
Enjoy the pictures -- the kiddies had so much fun with this photo shoot.
Nicole
Tuesday, June 28, 2005 3:25 PM CDT
We are at Camp and things are going well. Today we had a quiet afternoon with Luke since he just wanted to do crafts instead of fish or swim.
Things have been very quiet and relaxing so far although we spend a lot of time in group sessions and adult blooper games. My team is AFOOFA (All for one and one for all) and we are, albeit not in last place, not far from there.
Tonight is the talent show nad Luke has changed his mind about 10 times regarding participating and playing his violin. ALexis decided NOT to dance her tap routine but Isabella is still planning on singing her song.
Mosquitos are biting us A LOT but otherwise Camp is wonderful.
Thinking of all of you and kisses to Monte!
Nicole
Tuesday, June 21, 2005 4:01 PM CDT
Luke had a nice weekend. We participated in Donovan McNabb's Football Camp at the NovaCare Center. Although Luke was by far the youngest, amazingly he kept up and we are thrilled that he not only had fun, but had a "good workout". He was so exhausted he told his Dad he needed to take a nap and did not want to wait for autographs. Now that is TIRED.
We celebrated Father's Day with a day full of visiting grandparents, breakfast at Rose's in Roseto, fun at the Lehigh Valley Zoo and John finished the day mowing the grass. For the first time in 6 years, I did nothing for Father's Day. This of course did not make John happy, but the kids headed by Luke decided they wanted to take charge this year. They made their own gifts which I did not even see until Father's Day and decided the zoo was the place to take Daddy. Luke awoke John at 5:50a.m. so excited to give him his present: a cigar box full of keepsakes and special things that Luke collected for his Dad. Alexis gave John a picture she had made and a Barbie's Hotwheels Membership card. Isabella also made John a lovely circular picture.
Now we are finishing the week out excited about next week at Camp Sunshine and the Lanosa wedding in Boston. Monte will be well taken care of while we are gone I am sure, but I am sad to be leaving him already for such a long time. He hopefully will be graduating from obedience school this week although he still is stubborn enough that if he wants to run out of our yard, no amount of coercing will stop him. Guess it is time for the invisible fence.
Otherwise, he does do well with sit, down, stay, etc. More classes probably will be necessary to leash walk etc but he is making progress. Although he could care less, his favorite part of class is the playtime at the end where all the dogs go play. It is so cute!!
Upon our return from Camp, is our next MRI on 7/5. Keep your fingers crossed all looks good for that MRI. We will keep you posted.
Oh, by the way if you cannot locate Luke in the above picture, find teh first horizontal stripe in the grass, go to the right end of the stripe and go up to the group of kids. He is the cute one with the glasses sitting indian style.
Nicole
Monday, June 13, 2005 5:31 AM CDT
So it has been already one week since Luke finished kindergarten and graduated. Hard to believe but wow, what growth he has made this year.
His teachers were wonderful and truly made school a learning environment that was fun. Luke is a reader. I am so happy --now if we could just convince him that it is fun to read anytime.
Luke also last week graduated from the Twinkles at violin. Another amazing accomplishment since almost 2 years ago, he never picked up a violin. Funny too how now all the other songs move much quicker. I questioned the logic of his teacher in taking so much time for the twinkles but it was to practice form, and all those related tasks that made getting to this point worth while.
So we are trying to plan our lazy summer days. Camp Sunshine is two weeks away and we are all very excited about going this year -- which will probably be our last year. If I could just figure out what costumes we are bringing...
Our Monte is making progress in obedience class learning the foundations. He still, much like my 3 kids, has selective hearing but he does well with sit, lay, stand, stay and leave it. THe jumping is much better but he cannot control his excitement when new people show up. Plus, his chewing is still out of control. I have yet to find the toy to occupy that habit although the one I got last week helped but it is gone already. To that end, left to his own devices, he did eat a hole in our carpet. Yep, straight down to the padding and then some. Why he chose to do that or even at that spot we will never know. Perhaps there was food caked there (imagine that) and he just got too carried away. At any rate, area rugs are being purchased this week to cover the hole.
Those things are frustrating but we love little Monte nonetheless. Just like with my kiddies, they all drive me nuts and have me questionning why it is that I am the only one with kids (and a dog) who fail to listen to me EVER. But, I am confident that one day (hopefully not to far off) I will look back and think those were the best days of our lives and as my kids grow into amazing well behaved respectful adults I will finally feel that I was able to do this job. Till then, I will keep drinking coffee.
Thanks to our wonderful Sylvia for taking the kids to the Little Mermaid. Alexis was so thrilled and Luke, despite his tough masculine act, he too loved it. You are an awesome friend and definately kicked off their summer on a high note.
I am busy coordinating the Kick for Kancer for the Pediatric Cancer Founation of the Lehigh Valley, Inc. (www.cancersupportgroup.org) so if you know of any children with cancer and their siblings who would like to attend, please have them register on our website. This year is gearing up to be a wonderful camp. Also, if anyone wants to volunteer -- you can let me know too!!
Thanks for everyone and everything.
Nicole
Friday, May 27, 2005 4:33 PM CDT
The sun is shining today and that is a good thing. I am so tired today I think I have chronic fatigue syndrome. Of course, maybe I am on the downslide of the 8 cups yesterday -- Thanks Gail!
Anyway, Alexis saw the doctor the other day and he said she is looking better. She was fitted for her ear plugs which will be bright pink and come with a whopping $65 price tag. Go figure!
Luke, Alexis, John and I braved the crazy rush hour traffic for the third year in a row and attended the Dream and Promise Benefit in NYC for the Children's Brain Tumor Foundation. As always, it was an amazing time and allowed us again to meet some top notch doctors such as Dr. Burger who is a neuropathologist --one of the guys in the basement who the neurosurgeons depend on for proper diagnosis of brain tumors -- but who seldom receive the recognition they deserve. Luke had a great time with Lisa who always manages to help him run laps in the lobby of the ballroom. We were also able to hook up with our friends the Paulsons who spoke this year at the Benefit and truly allowed the urgency of support for CBTF's mission to shine through. Hopefully, they will be able to continue to fund grants to help research so no parent ever has to hear "your son/daughter has a brain tumor".
Yesterday I was able to meet with the school district about placement for services Luke will require in school next year. I am fortunate that our school district is always trying to find ways to make the services available to Luke, but as the need for those services increase we are being put into a bad situation between choosing the services he needs over choosing the environment he needs. Our choice to send him to private parochial school negates the districts ability to provide the services in his school requiring me to commit myself to every day before during and after to making sure I can take him to the public school for services.
The odd thing is that in Pennsylvania it is a 50/50 split with Intermediate Units in terms of whether they go into private schools or not for vision services. In Northampton County they do go into private and parochial schools and provide needed services but in Lehigh County our IU does not. I am trying to find out what can be done in an effort to change this but I am one woman in a sea. So changes for our family are going to be necessary and lots of plans are changing for the next year. Pray for guidance.
On a higher note, Luke is performing with his fellow violin students at MayFair tomorrow at 12:30 pm in the Kids Stage. His level plays last and I think it will run till about 1:30 pm/1:45 pm. I just hope he lasts till the end!
Alexis needs to practice for her recital next week and Luke needs to polish his songs as well as both kids have their year end recitals on Sat 6/4; Alexis in the evening and Luke in the morning.
On Monday 6/6 Luke graduates from kindergarten and all are invited to this event at St. Stephen's School in Whitehall at 6:30 pm. Refreshments will be served after as all parents are bringing a dessert.
Otherwise, my plans are to finish trimming my shrubs and finally dump all my remaining mulch around this house. So, please enjoy your long weekend too and keep all those with special needs in your prayers.
Nicole
Friday, May 27, 2005 4:33 PM CDT
The sun is shining today and that is a good thing. I am so tired today I think I have chronic fatigue syndrome. Of course, maybe I am on the downslide of the 8 cups yesterday -- Thanks Gail!
Anyway, Alexis saw the doctor the other day and he said she is looking better. She was fitted for her ear plugs which will be bright pink and come with a whopping $65 price tag. Go figure!
Luke, Alexis, John and I braved the crazy rush hour traffic for the third year in a row and attended the Dream and Promise Benefit in NYC for the Children's Brain Tumor Foundation. As always, it was an amazing time and allowed us again to meet some top notch doctors such as Dr. Burger who is a neuropathologist --one of the guys in the basement who the neurosurgeons depend on for proper diagnosis of brain tumors -- but who seldom receive the recognition they deserve. Luke had a great time with Lisa who always manages to help him run laps in the lobby of the ballroom. We were also able to hook up with our friends the Paulsons who spoke this year at the Benefit and truly allowed the urgency of support for CBTF's mission to shine through. Hopefully, they will be able to continue to fund grants to help research so no parent ever has to hear "your son/daughter has a brain tumor".
Yesterday I was able to meet with the school district about placement for services Luke will require in school next year. I am fortunate that our school district is always trying to find ways to make the services available to Luke, but as the need for those services increase we are being put into a bad situation between choosing the services he needs over choosing the environment he needs. Our choice to send him to private parochial school negates the districts ability to provide the services in his school requiring me to commit myself to every day before during and after to making sure I can take him to the public school for services.
The odd thing is that in Pennsylvania it is a 50/50 split with Intermediate Units in terms of whether they go into private schools or not for vision services. In Northampton County they do go into private and parochial schools and provide needed services but in Lehigh County our IU does not. I am trying to find out what can be done in an effort to change this but I am one woman in a sea. So changes for our family are going to be necessary and lots of plans are changing for the next year. Pray for guidance.
On a higher note, Luke is performing with his fellow violin students at MayFair tomorrow at 12:30 pm in the Kids Stage. His level plays last and I think it will run till about 1:30 pm/1:45 pm. I just hope he lasts till the end!
Alexis needs to practice for her recital next week and Luke needs to polish his songs as well as both kids have their year end recitals on Sat 6/4; Alexis in the evening and Luke in the morning.
On Monday 6/6 Luke graduates from kindergarten and all are invited to this event at St. Stephen's School in Whitehall at 6:00 pm. Refreshments will be served after as all parents are bringing a dessert.
Otherwise, my plans are to finish trimming my shrubs and finally dump all my remaining mulch around this house. So, please enjoy your long weekend too and keep all those with special needs in your prayers.
Nicole
Friday, May 27, 2005 4:33 PM CDT
The sun is shining today and that is a good thing. I am so tired today I think I have chronic fatigue syndrome. Of course, maybe I am on the downslide of the 8 cups yesterday -- Thanks Gail!
Anyway, Alexis saw the doctor the other day and he said she is looking better. She was fitted for her ear plugs which will be bright pink and come with a whopping $65 price tag. Go figure!
Luke, Alexis, John and I braved the crazy rush hour traffic for the third year in a row and attended the Dream and Promise Benefit in NYC for the Children's Brain Tumor Foundation. As always, it was an amazing time and allowed us again to meet some top notch doctors such as Dr. Burger who is a neuropathologist --one of the guys in the basement who the neurosurgeons depend on for proper diagnosis of brain tumors -- but who seldom receive the recognition they deserve. Luke had a great time with Lisa who always manages to help him run laps in the lobby of the ballroom. We were also able to hook up with our friends the Paulsons who spoke this year at the Benefit and truly allowed the urgency of support for CBTF's mission to shine through. Hopefully, they will be able to continue to fund grants to help research so no parent ever has to hear "your son/daughter has a brain tumor".
Yesterday I was able to meet with the school district about placement for services Luke will require in school next year. I am fortunate that our school district is always trying to find ways to make the services available to Luke, but as the need for those services increase we are being put into a bad situation between choosing the services he needs over choosing the environment he needs. Our choice to send him to private parochial school negates the districts ability to provide the services in his school requiring me to commit myself to every day before during and after to making sure I can take him to the public school for services.
The odd thing is that in Pennsylvania it is a 50/50 split with Intermediate Units in terms of whether they go into private schools or not for vision services. In Northampton County they do go into private and parochial schools and provide needed services but in Lehigh County our IU does not. I am trying to find out what can be done in an effort to change this but I am one woman in a sea. So changes for our family are going to be necessary and lots of plans are changing for the next year. Pray for guidance.
On a higher note, Luke is performing with his fellow violin students at MayFair tomorrow at 12:30 pm in the Kids Stage. His level plays last and I think it will run till about 1:30 pm/1:45 pm. I just hope he lasts till the end!
Alexis needs to practice for her recital next week and Luke needs to polish his songs as well as both kids have their year end recitals on Sat 6/4; Alexis in the evening and Luke in the morning.
On Monday 6/6 Luke graduates from kindergarten and all are invited to this event at St. Stephen's School in Whitehall at 6:00 pm. Refreshments will be served after as all parents are bringing a dessert.
Otherwise, my plans are to finish trimming my shrubs and finally dump all my remaining mulch around this house. So, please enjoy your long weekend too and keep all those with special needs in your prayers.
Nicole
Tuesday, May 17, 2005 1:46 PM CDT
What a crazy week -- but then our lives are never simple.
Alexis is post surgery and although a rough start through the weekend she is doing much better. She spiked a temp yesterday again but is on the mend.
Her breath is a little funky but Dr. Koch states that is from dead tissue and is normal.
Her voice is a little higher lately and that is so cute. She also has been living in her Violet PJs and Dr. Koch calls her Mrs. Incredible.
The time spent at home goes in waves. Some times I feel like I am accomplishing a lot and then the day is over and my house is still a mess!
My mother had a freak accident on Friday with a folding lawn chair causing an amputatation of the first knuckle upward of her right index finger. Freaky to say the least but the good news is she is recovering. Bad news is they could not reattach but hopefully she recovers well and quickly and is back to using her hands and fingers soon. I am sure the need to be "helped" is killing her.
Luke is doing well and althoug Alexis graduates this Thursday, Luke is in school until June 6th when he too graduates from Kindergarten. Both have been accepted to attend St. Elizabeth's school next year and besides the uniforms, both are very excited.
Isabella has made a full recovery from her mouth sores and is almost completely healed from a partially infected finger nail. Hopefully soon, we will all have a few days of non-injury or illness. Would certainly be a nice change of pace.
Thanks to all who are helping us through this week of influx with transporation and schooling and add some extra prayers for my mom as she recovers from her accident.
Montague is starting obedience school this week so we hope that in conjunction with an invisible fence will help bring some more sanity to our lives.
See you later alligators!
PS: Alexis' dance recital is June 4th as is Luke's next violin recital.
Nicole
Thursday, May 12, 2005 9:20 PM CDT
So the eve has come before now Alexis' turn at surgery albeit much more minor than those Luke faced.
Alexis will be having her tonsils & adenoids removed and tubes placed in her ears. Her surgery is set for 7:30 a.m. with a 6 a.m arrival. I myself will be up by 4:30 am setting up for yet another fundraising yardsale this weekend.
We should be home by 5pm so I hope to update on our little princesses recovery
Isabella is recovering finally from her last week crazed illness with the herpes simplex 1 in her mouth. What a horrible and very painful few days it has been for her with a 105 fever and lots and lots of discomfort. ALthough much improved, her tongue is still quite swollen and she still is not eating much.
Luke is doing well and it is finally nice to add him to the end of the sick list in our family. WE continued to be amazed by his intellect and the changes we see every day as he continues to grow up. WE are so thankful for every day with all these amazing kiddies and ask that you keep those who are having a hard time lately in your prayers, including Kyle & Ryan.
More later Thanks Nicole
Friday, May 6, 2005 4:33 PM CDT
Proud to be your Friend!
Make sure you read all the way down to the last sentence, and don't skip ahead.
I've learned.... That life is like a roll of toilet paper. The closer it gets to the end, the faster it goes.
I've learned.... That we should be glad God doesn't give us everything we ask for.
I've learned.... That money doesn't buy class.
I've learned.... That it's those small daily happenings that make life so spectacular.
I've learned... That under everyone's hard shell is someone who wants to be appreciated and loved.
I've learned.... That the Lord didn't do it all in one day. What makes me think I can?
I've learned.... That to ignore the facts does not change the facts.
I've learned.... That when you plan to get even with someone, you are only letting that person continue to hurt you.
I've learned.... That love, not time, heals all wounds.
I've learned... That the easiest way for me to grow as a person is to surround myself with people smarter than I am.
I've learned.... That everyone you meet deserves to be greeted with a smile.
I've learned.... That there's nothing sweeter than sleeping with your babies and feeling their breath on your cheeks.
I've learned.... That no one is perfect until you fall in love with them.
I've learned.... That life is tough, but I'm tougher.
I've learned... That opportunities are never lost; someone will take the ones you miss.
I've learned.... That when you harbor bitterness, happiness will dock elsewhere.
I've learned... That I wish I could have told those I cared about that I love them one more time before they passed away.
I've learned.... That one should keep his words both soft and tender, because tomorrow he may have to eat them.
I've learned.... That a smile is an inexpensive way to improve your looks.
I've learned.... That I can't choose how I feel, but I can choose what I do about it.
I've learned.... That when your newly born child holds your little finger in his little fist, that you're hooked for life.
I've learned.... That everyone wants to live on top of the mountain, but all the happiness and growth occurs while you're climbing it.
I've learned ... That it is best to give advice in only two circumstances; when it is requested and when it is a life thr eatening situation.
I've learned.... That the less time I have to work with, the more things I get done.
To all of you .. Make sure you read all the way down to the last sentence.
It's National Friendship Week. Show your friends how much you care. Send this to everyone you consider a FRIEND, even if it means sending it back to the person who sent it to you. If it comes back to you, then you'll know you have a circle of friends.
HAPPY FRIENDSHIP WEEK TO YOU!!!!!!
YOU ARE MY FRIENDS AND I AM HONORED!
Tuesday, April 26, 2005 6:04 AM CDT
Things are getting "healthier" around here; even Montague had a good checkup at the Vet yesterday and has gained almost 5 pounds.
Alexis' hearing issues are becoming more obvious -- or maybe it is her reminder that the reason she does not answer or listens to the TV so loud is she cannot hear.
Isabella is going through a weird faze right now -- strange things and some pee pee accidents in the bathroom in front of the toilet...cannot explain it.
Luke had a good report in Boston and as this picture shows, caught up with his friend Michael. We met Michael on an overnight stay at the hospital when Luke had an unexpected lung collapse after his surgery. Michael at that time had just been diagnosed. It was certainly Divine Intervention that we ended up there and forged a very nice friendship for 2 amazing little men!
This weather has given us all a little bit of the duldrums and we hope the sun shines again and heats up the place real soon.
Luke went fishing this weekend in the cold rain at Ranger's Lake with John and caught a trout. He had a great time and all the volunteers at Ranger's Lake were amazing and made it truly a special day for all the kids. Luke even walked away with a fishing rod that we hope to be able to use again soon. Thanks again to Gene his volunteer, to Dream Come True and to all the other people involved in making this a special day (despite the weather) for everyone.
Luke is really maturing before our eyes. It is sad that he still cries for no reason when he doesn't get his way, but he is really becoming the big brother in looking after his sisters and really become more independent in his own caretaking. He got a new bike and enjoys riding and is really doing well in school and overall listening and behavior.
He loves his German lessons and is doing very well - he is up to some 31 animal words and the numbers and colors. He even built a room and named all the items inside. Alexis enjoys German too but is less vocal. She is digesting it! There teacher is amazing and makes learning fun.
Luke also has progressed with his violin - finally realizing that practicing is not as bad as it seems. He has worked hard on proper technique and it is paying off. Hopefully soon we move to a new song!
All in all, things are slowing down a bit. Alexis' surgery is right around the corner and then we will all be forced to relax a little to care for her over the 3 weeks of no activity.
Life moves pretty fast -- if you don't stop to smell the roses once and a while, it will just pass you by. Did Ferris Buehler say that? Very true!
Blessings to all! Nicole
Wednesday, April 20, 2005 6:19 AM CDT
Sorry for the long delay in writing. It has not slowed down enough since returning to pen paper.
Boston went well. Luke's appointment with all the doctors resulted in a concensus that he was doing really well and although the tumor was doing interesting things, it was moving in a good direction. Exception was taken for the hemorrhages which they believe could be connected to his blurry vision in February. They are concerned about these but positive that they will resolve without further incident. I left with a smile and to follow-up in one year back in Boston.
The time spent with Anna and the girls was wonderful as always. Our kids are more like siblings in more ways than having similar names. They love each other's company and although Luke was outnumbered 6 girls to one Luke, he managed like a champ.
Traffic over the Tappan-Zee was crazy both ways as usual but we finally made it home late Friday night.
Saturday was crazy but we did escape to buy Luke & Lexi new bikes for which they were very excited. Luke began complaining of a headache Saturday and we were sure there was too much activity that had caught up with him.
Sunday he complained of extreme headache with bad stomache pain and that led to nausea and vomiting. We were freaking out. After all, with Luke's situation the tell tale signs for things "happening" are headache, nausea and vomiting. All the color drained from Luke on Sunday and he took 2 long 3 hour naps. He did not want to eat or drink and any fluid we gave him came back up. He dry heaved. He ached.
WIthout fever or other symptoms I was really worried that something bad was going on. Luckily (how silly that sounds), on Monday he woke up with a nose full of stuff and really swollen glands. We saw the oncologist (Thanks Dr. Phil!) and did a rapid strep. Negative. He prescribed some drugs and we decided to wait till Tuesday for any growth or other indications on his workup. If he worsened the plan was a CT Scan. Luckily (again that word of paradox), Luke ended up with a Strep G variation which is not very common (go figure) and he as I write this is on the mend to recovery.
About the same time, Alexis complained Sat night into Sunday of extreme ear pain and awoke Sunday with drainage on her pillow and a low grade temp. With her current history of hearing loss and fluid issues, I made an appointment with her ENT and although there appeared to be no infection, he said she could have blown a drum and drained over the weekend. We scheduled her surgery (tonsils, addenoids, turbens and ear tubes --- poor girl!) for May 13th so that she would be well enough to participate in her Dance Recital on June 4th and attend camp. So she misses the last week plus of school and any activities for 3 weeks post surgery. Sounds like fun for both of us - UGGHHH.
As I write this, Alexis has spiked a temp this morning on the dawn of the school program at school. It is always something and at this point, the weight on my shoulders is heavy.
Not to be left out Isabella has been quirky lately. Monday she decided to spit on the floor and smear it with her hands. Yesterday she decided to pee on the floor right as Daddy was putting on her PJs. She also tried to feed her nose ice cream, attack Mommy's lipstick and use it to color not only her face but her clothing and last but certainly not least awake at 1:30 a.m. and go out to the garage and then stand there while the house alarm went off, causing Mommy & Daddy to jump out of bed and chaos for 10 minutes.
So, forgive my tardiness in writing. For at first I did not know what to report and after, I have just been too tired. Thanks for all your notes and calls checking in. Andrea I promise to call you back -- I did receive your 18 calls (hahahah)
Stay tuned for more adventures in our lives as the Ronco Saga continues.
Love to all Nicole
Monday, April 11, 2005 6:38 PM CDT
Sorry for the silence but things have been too busy to even steal away a few minutes. Tomorrow we leave for Boston to get the other doctors perspective on Luke's tumor and the hemorrhage issue.
It has been confirmed that Alexis has some definate hearing loss due to a constant fluid influx in her ears. Seems her large tonsils create a vacuum which forces the fluid into her ears where it is not draining out properly. She failed yet another hearing test. So we are trying non-invasive alternatives but probably will be forced to due surgery in a month or so.
To complicate the week, my brother was assaulted the other night and was attacked and suffered a slashed neck requiring 70 stitches. Luckily, he is doing well and we are trying to work to hopefully apprehend the assailant. Also, we are working to help him pay his medical bills as he had no insurance.
Isabella is doing well and Monte is also adjusting to life in the Ronco household. He still is moving through the learning curve of puppyhood but hopefully we get to the plateau soon. Otherwise, John keeps busy with work and as the semester ends, my work seems to have a new fire under it as well.
Thanks for all your prayers and well wishes. We will touch base post Boston and keep you all apprised of our "news".
Best Nicole
Friday, April 1, 2005 6:09 AM CST
Well, the news is in. Luke's tumor is stable BUT (why is there always a but...) he has 2 areas of hemmorhage (bleeding) inside the tumor. ALthough they are small, the oncologist said this is not expected with Luke's type of tumor. Also, the blood was new so the bleeds occurred within days of the latest MRI.
We are happy the tumor is stable but a little worried about the hemmorhage. Of course they could stop bleeding and disappear which is what the oncologist believes will happen. Of course, more bleeds could occur which lead to ultimate stroke. On a plus side, Luke does not have any symptoms of these bleeds and is feeling good.
His vision was stable as well which is also very good news. Endocrine blood work was done to check on his hormone levels which have all been good so far -- those results should be in by next week or so.
It was a long day. At the end of it I left feeling confused: happy that there was no growth and worried about the hemmorhages.
But we are blessed and we will continue to remind ourselves. Luke was tired by the end of the day, but we made one final trip to Fed Ex the package of stuff off to Boston. They will review his stuff next week and we are scheduled in Brain Tumor Clinic on April 13th. Keep the good thoughts coming and we will keep you posted.
Monte is doing well also and managed this week full of appointments and less time with us very well. He did have an accident last night because he just could not wait till I finished getting my shoes on to go potty. Otherwise, he really is doing good. But don't take your eyes off him for a second, he will have your favorite toy, stuffed animal or slippers in his mouth. Got to love that puppy teething!!
Tonight is the Sounds of Spring a cappella concert at Allentown Symphony Hall performed by Penn State University's very own a cappella groups. If you haven't gotten your tickets, call now (610-285-5000).
Thank you for Spring. Thank you for warm weather. Thank you for our blessings and our friends!
Nicole
Wednesday, March 30, 2005 6:39 PM CST
Well, I will be brief because I know I will have lots to report tomorrow post MRI news and vision and endocrine evaluation.
But, the big news to share is the focus of this picture -- our new Puppy!! His name is Montague (yes, I am a Shakespeare fan, you will recall my last dog was named after Julius Caesar).
He is a Shepherd mix and we were able to adopt him and from a rescue who got him from a kill shelter in Ohio. He is about 23 pounds although he is eating like a horse. The first few days he was quite confused about indoors and outdoors but he is very smart and has had NO accidents in the house since Sunday. He also is good about going in his crate and although he overwhelms Isabella (almost his size!), everyone seems to really enjoy his company although admittedly Mommy loves Monte the best!
We have been walking early in the morning and today we all went to the park with Aunt Pam and her geriatric dogs, Domino & Ginger. Poor Monte wanted to run like crazy and Dom & Ging could barely keep up. But, it was fun time with the cousin dogs.
Keep Luke in your thoughts and prayers for good news tomorrow and stay tuned. All in all, he has been feeling quite good so we hope that is good news.
Nicole
Sunday, March 13, 2005 7:54 PM CST
Fear not -- I know it has been quite some time since I last wrote but I have been busy as usual keeping us with my three little indians.
Luke is feeling a little better. Today he looked the best I have seen him in a long time. The kind of look that makes you want to squeeze him really tight and never let him go -- man, I love that little boy so much it hurts.
He is doing really well in school and his conference is on Wednesday. He has a full bunch of appointments coming up though in the near future so keep us in your thoughts: 3/25 Neuropsych Testing, 3/28 MRI, 3/31 Endo/Oncology/Neuro-Ophthalmology, 4/13 Boston eval in Brain Tumor Clinic.
I recently attended a Pennsylvania Cancer Consortium Summit in Harrisburg and met some interesting people and learned about the plan for Pennsylvania in terms of Cancer. Of course lots of interest is focused on adults with lung and cervical and prostate cancer but Carolyn and I were instrumental in planting the seeds of the pediatric needs. Of course it is a small percentage but since we are finding more ways to prolong these special kids lives, we need to find ways to be prepared to address the other issues that brings: long term side-effects, quality of life outcomes, etc. We hope to find the right way to integrate this into the other facets are are supporting and hope the Pediatric Cancer Foundation of the Lehigh Valley can be instrumental in helping to formulate some plans for the PAC3.
Luke and Alexis have been studying German for 3 months now and they are doing great. There teacher is awesome and makes it not only fun but crafty. They have learned their body parts, their colors and their numbers currently. Since Grammy is currently in Germany visiting her family, they hope to get some serious practice time in when she returns -- hopefully with pressed pennies for Luke and "kids" coffee. Go figure.
Elsewhere, I am still on the search for the perfect dog for our family. As many of you know, it has almost been 2 years since my Beloved Julius died and I decided the time was now and we needed to find ourselves a new "family' member. My search has taken me lots of interesting places and my research led me to interesting breeds but the price sometimes has proven problematic. So, we continue our search with various rescue organizations etc. Keep your fingers crossed we find a great match soon! Can you tell I am anxious!
Alexis & Isabella are doing quite well too. Bella is amazingly smart, imitating her brother and sister quite well. She is fearless and brave and so polite but she is quite stubborn.
Alexis is doing well with school and making lots of new friends. It has been a blossoming year for her and we are so glad. Although sometimes it is sad how quickly they are growing up, it is amazing to see them develop and learn new things like reading and telling time and just finding their own tune. Beautiful creatures.
One last note, Alexis has been having some trouble with her hearing so say some extra prayers it is nothing. She failed a hearing test but we are unsure if it was related to unknown fluid in her ear or another problem.
Thanks for the continued prayers for Luke -- he realizes he is very lucky to be blessed with so many friends and we realize too that it is the storming of the heavens that keeps us strong! Thanks! Nicole
Monday, February 21, 2005 8:58 AM CST
Well Thon is over --$4,122,483.65 raised for kids with cancer through the Four Diamonds Fund. The event was -- AMAZING. Penn State's Lehigh Valley team was ---AWESOME. Our experience was very ---MEMORABLE.
We had a great time and more importantly, we supported a great cause. I often find myself wishing that CHOP had such a great event to help them raise money to help increase research and programs for children like Luke since that is where we go for treatment but I am just so happy that I can share in this event to help the cause anywhere.
Maybe one day all the programs for children with cancer will receive proper funding. Maybe one day no doctor will have to tell their patients that if we had more money we could offer that service or provide that program or help you with paying for that treatment or we cannot initiate more research because...
Although Luke is still struggling to understand what THON really means and the impact and the sacrifice these kids make every year, for John and I it is so profound. We cannot believe the dedication and the maturity of these students and the amazing way they take this commission to heart and exceed all barriers to end up triumphing.
Thank you Christina and Thank you Matt for dancing for 48 hours. Thanks for enduring feet swells and foggy memories and depleted bodies for the kids. Thank you to all your supporters, and I apologize because I know I will miss someone here: Jacqui, Dave, Heather, Luis, Adam, Suzanna, Cindy, Merci, Eddie, Jay, Juan, Chris, Todd, ...the list goes on.
Luke has been having some vision issues lately and every day we fear that although he is okay today, his vision doctor did tell us last week this could be the beginning of total vision loss. It makes me sad to think that we fought so hard for Luke and to get the upper hand on this tumor, finally resorting to Protons to SAVE what vision he had left and now, we may lose the battle in that arena anyway. But I also know and hope that Luke will remain a survivor. That despite what every obstacle may come his way tomorrow or the next day, he will remember all those who are fighting for him and all children like him to win the battle.
As the Thon dance stated: Dancers your hired, Cancer YOUR FIRED!!
Love to all and Thank you!!!
Wednesday, February 9, 2005 3:20 PM CST
Disney was wonderful. The weather held up with high 60's and low to mid 70's. I faint to think that a few days I actually complained it was cool. When you return to Pennsylvania where our current hot spell has us in the 40's you realize it is all relative.
Luke's main mission during our Disney trip was to score every single pressed penny ever made in Disney. You know these crazy machines that charge you $0.51 for a pressed penny with your favorite character or scene on it. Luke has been collecting these for about a year now and it is nothing short of an obsession. So, Disney provided a unique environment where every few steps there was another machine where you could drop $2.04 for 4 pennies. Of course too there was a few of the pressed quarter machines too.
Good news is that we left some at Disney for our next trip to seek out and find. But if any of you are travelers and find yourself near a pressed penny machine outside of Pennsylvania or Disney, you may want to pick one of up for Luke. There would be no better gift I promise you!
We met some more characters this trip too but still did not find Hercules or Aladdin or Tarzan. Seems we need to plan better ahead next time to find out where they will be. Of course the same was true for Alexis' and Isabella's top picks as we could not find Sleeping Beauty or Alice either.
The great part of the trip was that we never felt that the days had slipped away from us as most trips do. We went at our own pace, enjoyed each day and night, even got to spend a few nights next to a bottle of wine in the hot tub and one night at the dance club central of Pleasure Island. Ergo it was helpful to have Grammy & Pappy with us who like the kids crashed early at night.
It is admittedly hard to get back into the swing of things now that we are back. Part of it is the weather is just depressing, but the second part of it is could be that despite that today is my father's birthday, last week was my sister's birthday and next week is, yes, my own birthday, I still do not know what I want to be when I grow up. By that I mean, that I find myself as always getting too many things on my plate and then days like today come along when Luke is sick unexpectedly and without reason and I think, am I doing what I should be doing? Am I spending my time in the best way possible?
I know as I promised along time ago, every day cannot be carnivale but sometimes when too much is on one's plate, an elder person loses much patience and energy. Then, I wish I could regress to be like Aunt Sue -- the only 45 year old who acts like a 5 year old. How do you do that? I try, honestly I do, but I always end up acting like a crotched old bag who is no fun. I am tired and depleted today not knowing what is the next obstacle with Luke and of course, worrying as I do.
But, tomorrow is a new day. We have Disney pictures to print and photo albums to fill and memories to laugh about and future memories to be made. Pray for sunshine real soon and for all those who need extra blessings this time of year . . . including the Eagles too I guess!
PS: Luke has had a online quilt created for him. If you wish to visit it please visit: http://smilequilts.com/luker.html
Nicole
Wednesday, February 9, 2005 7:45 AM CST
I had intended to spend a great portion of the morning outlining our wonderful vacation and all the fun the kids, big and small, enjoyed. Unfortunately, however Luke is complaining of that "never seems to go away" stomach issue that can only be followed by vomiting.
Is it his shunt again????
Stay tuned and I will hopefully update you on our wonderful explorations in Disney!
N
Friday, January 14, 2005 3:43 PM CST
At long last the word from Boston is in ... and it is GOOD.
The doctors felt the films looked good and the crazy changes in the tumor they felt were very much in line with the effects of the protons and hopefully breaking down the tumor.
The cystic component on the inside is definately larger but they did not feel that the overall size of the tumor had increased. Additionally, although there is no way for certain to know if it is blood of proteinaneous material, the radiologist up there did not suspect hemorrhage at all and they actually thought the density was much lighter.
We are hopeful that this means things are happening for the positive. The cysts will remain an area of worry for me especially as they are filling up with stuff and if they grow in size and become problematic for Luke later on.
But, as we enter this weekend, I am breathing a sigh of relief. We have 3 months of enjoyment kicked off by our soon hopefully wonderful Disney trip.
Thanks for your notes of encouragement and your phone calls of "worry" along with mine. All-in-all, we think he is doing really good.
Neuropsych testing was again proposed for this year, but without any academic indicators of need, we may pass till next year.
Thanks! Nicole
Thursday, January 6, 2005 1:22 PM CST
So, we are in limbo right now awaiting our next appointment which is not until 3pm with Endocrine.
Good news is Luke's vision is stable. Bad news, and this is only preliminary, is that the tumor has "minimally increased". The oncologist believes that it really has not increased. However, the report is not final yet and even if it was he is unsure he agrees. Basically what we are seeing is the inside of the tumor also has a cystic component. That portion is larger than previously making the overall size of the tumor larger as well.
Also, the 2 cysts on top of the tumor show evidence of "hemorrhaging". Why would that be? Well maybe it is the tumor bleeding (and we do not know why that is) or maybe it really is not blood but rather proteinous material. At any rate, they are not concerned because he is feeling well and his vision is stable. I on the other hand am not sure how I feel.
Maybe the inside of the tumor is dying and it is becoming liquified and that is why the cystic portion is bigger. But, maybe the tumor is making new cells and going to grow and that is why there is more fluid inside. Maybe that is why it is "bleeding" out into the other cysts because it is "feeding them".
At this point, the oncologist is sorry I ever saw the report but really I am not going to freak out. I will hound him until the final report is in and then I will sit in anxious anticipation until Boston reviews the films and gives me there evaluation. Depending on their thoughts, I may then spend the next 12 weeks in panic or total anticipatory anxiety until the next MRI.
Which brings me to right now. I am ok. Tomorrow will will continue to do our thing. Really, my life has taken such unbelievable turns over the last 6 years that I could have never anticipated, hoped for or feared. And, that is ok. Spending the next 6 years worrying for future disasters, anticipated, feared or otherwise would be an equal waste of time.
So, I will try to enjoy what we do -- our upcoming vacation and continued good reports from Luke's teacher about his progress in kindergarten. I will continue to annoy Luke with bequests to practice his violin and her german and try to exercise patience and understanding when he yells at me for not getting his way or when he has misbehaved.
All and all, my headache from this morning is no worse off.
Love to you all and thanks for your prayers and support. I am off to read Luke a book.
Nicole
Monday, January 3, 2005 7:08 PM CST
Today went well, despite some bumps. My coffee maker decided to break this morning, leaving me "stealing" coffee from Aunt Suey. I managed to forget Luke's special Eagles folder he asked me to bring along, as well as his special Catty. Lastly, I also forget Isabella's shoes as I threw her in the car bright and early just in her pjs.
Luckily though, we made it to the center in plenty of time and Luke tried his best to do the MRI awake. But the movie goggles were too loose, the earphones too tight and he kept forgetting when he could move and when he could not. Maybe next time.
I did ask the doctors today though to change his meds for the MRI so hopefully he would recover quicker. Some of our previous experiences with the meds has led me to believe that mixing the Versed, Fentanyl and Pentobarb is a better combination as you require less Pentobarb and the Fentanyl is shorter acting. It worked like a charm and Luke woke up shortly after coming out of the MRI.
We enjoyed shopping at Disney as always, lunch at California Pizza, a visit to Toys R Us and then a special shopping treat at JC Penney for some "sweats" for Luke. It was an exhausting day but we enjoyed ourselves.
Now that the kiddies have successfully been bathed I feel it is okay to relax and start to unwind myself.
Thanks for the prayers today -- we do not get the results officially till Thursday (yuk!) but I am going to try to get a preliminary tomorrow.
Love to all and special prayer for my brother whose beloved dog Marley has disappeared. We are hoping for a safe and quick return.
Nicole
Sunday, January 2, 2005 3:31 PM CST
Well, tomorrow is our next MRI. Of course, I am hoping and praying for good news -- stability -- shrinkage. Maybe that is why I feel a little out of sorts today and cranky; anxiety.
Hopefully, Luke can make it through tomorrow awake and we will have fun drug free hangover free day shopping and having lunch.
Otherwise, life keeps moving at a busy pace. Lots to do and I always feel that I am either left with too much on my plate or little motivation to accomplish it. Luckily, our vacation is not too far off!
Love to all and Happy New Year.
Nicole
Tuesday, December 28, 2004 9:32 AM CST
Santa was busy this year and fortunate for my three kiddies -- they were just good enough to warrant a stop by old St. Nick.
Luke was happy to receive his only requested gift: a new computer with keyboard and speakers. We are still in the process of getting him set-up online where he loves to visit NickJr.com, Disney.com, PBS.com and others.
He even scored a new printer from Aunt Sue & Uncle Garry which is very cool. In addition, he loves his Prince Philip dressup costume, Datamax, personal CD player and PEZ dispensers.
We had a wonderful time spent with family and Luke was in his glory. Sometimes I think he is so self-centered and selfish and always worried about himself and making sure no one gets more than him or does more than him or has more than him however, his simple comments sometimes show me the deeper side. After the rush of Christmas was over, Luke & reflected on what is truly important. He said he loved his toys and was so happy he got his computer. He only wanted 3 things because Jesus only got three presents from the wisemen and that was only fair. But next year he told me all he wants for Christmas is his family together like this year. If I get presents too Mom, that will be okay but I just want my family together. Truly that is what matters most.
Although it was a bitter-sweet without Pop Pop, we will try to move forward in making more memories of family. Our family is planning a trip to Florida in January and of course, we are bringing family with us. In addition to our immediate family, my parents and my sister (Aunt Pam) are coming too. Luke is thrilled.
Alexis & Isabella had a great Christmas too. Both are growing up amazingly well and despite her terrible-twos, Isabella is a sweet and amazing little girl.
I will try to update their webpages too with lots of info and fun to enjoy as well.
Love to all and wonderful thoughts to Lauren on her super news this Christmas. Hoping only wonderful things are in store for 2005 for everyone!
Nicole
Saturday, December 18, 2004 4:50 PM CST
Luke played his first violin recital on the eve of his birthday, Friday, December 10th.
He played Twinkle Twinkle Variation A: Mississippi Stop Stop with piano accompaniment. He played AMAZING.
Luke's 6th coming of age this year has been a bitter sweet for obvious reasons. This week it was compounded by the fact that Luke has some stomach problems and headache complaints. Luckily they seem to have subsided and we hope that means he has just been the victim of a stomach bug.
He checked in for his 6 year check up weighing in at 58.5 pounds and measuring 114 cm. His foot size is a "1" and he has now lost a total of 6 teeth, the most recent on Tuesday.
Luke loves to color & draw and still loves his rescue heroes, his PEZ collection and driving his sisters crazy.
He is a smarty pants and is really enjoying learning to read although he is not a proponent of cleaning up after himself, or practicing anything, including his violin.
We explored New York last Saturday and I have includes some pictures from our trip. We met a lot of famous wax people, visited the Starbucks and Toys R Us New York.
Thanks to everyone for their wonderful kindness during this week of craziness. Pop Pop was an amazing man and his amazing life has only been made more real to us after his passing as we have been able to see all those he touched while alive come pay their respects.
Nicole
Sunday, December 12, 2004 6:07 AM CST
Pop Pop died this morning at 5:00 a.m.
Edmund S. Ronco was such an amazing man and even through all of this craziness over the last 5 months, his primary concern was never himself but his family whom he loved. Understandably, we all loved him too.
I am honored to have known such an amazing person and to have spent his final days in his company. I am humbled by the experience of dying and the knowledge which we have when we leave this world about what is coming. I truly believe we make conscious choices about who and what we choose to share with certain people in our lives, and I am in awe at the skill that Pop Pop used in his last days to pick his words and the recipients so well.
He was known since a small boy as "Ace" and he truly was an ACE!
I love you Pop Pop and you will be missed by so many who love you and your memory will be held close by all, including your 8 grandchildren!
Luke was experiencing some headaches around Thanksgiving but luckily it turned out to be STREP throat. I probably am the only parent who jumps for joy at that diagnosis and happily trots off to the pharmacy for meds!
Since recovering from that Luke is feeling good. He is tired a lot lately but we are hoping it is just his busy schedule and not something else.
Unfortunately, Luke's Pop Pop has taken a turn for the worse. After a continued battle with ITP and failure to control the platelets with traditional modalities, he recently went through an embolization of the spleen to stop blood supply to the spleen and hopefully allow his platelets a comback.
Not to be too pessimistic but today the surgeon told us not to hold out hope. He is not responding and they really have no further treatments for him and at some point he will continue to get spontaneous bleeds and eventually that will be his demise. As I write this even I cannot believe what I am writing. It is almost eery that this has happened and gotten to a point of no return. This is a devastating blow for our family and for a man who has been a strength and blessing to us all. Please continue to pray for divine healing and prayers for "painless comfort" which is what Pop Pop wants most of all.
So once again this year it is with heavy hearts that we enter the holiday season, hoping that Luke's January report will bring a little sunshine.
Holiday blessings to you and yours.
Nicole
Friday, November 19, 2004 9:54 AM CST
The beautiful picture above is compliments of Luke's kindergarten teacher, Mrs. Bentz, who does a great job of keeping the parents not only involved but able to share in the kids' days. Thanks!
As we approach Thanksgiving I know we have a lot to be thankful for. Our prayers so far have been answered and Luke is doing very well. His tumor has been stable for 6 months without any major complications yet. He is thriving in school and doing exceptionally well. He is learning to read it is such an amazing process and so breathtaking to hear him sound out the words and make the sentences in the books. AWESOME.
He is really doing well in violin too despite his complaints to practice it is really paying off. I am so proud of him.
He also just lost yet another tooth, bringing his total to 5 lost teeth to date. He asked the tooth fairy NOT to bring him any money because he was tired of getting dollars and coins. If he only knew ... So he was very pleased to find a Mogli PEZ dispenser under his pillow and looks forward to collecting all of the Jungle Book Pez Characters (I have a feeling Santa is already on top of that!)
We are also very thankful for our beautiful little girls who keep us quite on our toes, sometimes too much. Their personalities are really shining through and every day I am amazed at how children from the same genes, raised in the same house, can be SOOOOO different. Got to love God's sense of humor!
Finally we are thankful for our family who helps us tremendously and our friends who always know just what to do, like the surprise Dunkin Donuts coffee deliveries, or the tortellini soup, or the coffee at Panera's. There are countless friends who are always there for us in millions of little ways and we love you all dealy.
So enjoy your Turkeys. Enjoy your family and friends and take our blessings and prayers with you all for a wonderful Thanksgiving as we continue to be thankful for our blessings too! Lastly, thanks for your continued prayers for Luke's Pop Pop who still struggles with his rehabilitation but is making progress!
Tuesday, November 2, 2004 7:18 PM CST
Well as you can see from the picture - there was no Woody or Jessie, but instead we had Captain Hook, Belle & a Ladybug.
Actually I am going to pull up the pictures from last year because Alexis was Belle then too and 2 years ago Luke was Captain Hook (yes, it was a tight squeeze but he managed!)
The kids all had a grand time at their halloween parties as well as trick or treat. We even got to hang out with our friends Friday night at their annual hotdog halloween party - new for us but it was a grand time!
The kids are loaded with chocolate which is both Luke & my favorite; Alexis prefers the tootsie rolls, lifesavers & sweet tarts and Isabella would take anything. John has been really good about staying away from it!
We had a nice weekend complete with a visit to Pop Pop. Unfortunately, he is being a little stubborn in doing what he has to do, such as pushing fluids etc. He is quite swollen in his ankles and very tired all the time. He is diligient in his therapy but of course, it takes its toll and then he just wants to sleep.
I had to finally finish painting my shutters this weekend because I make a deal with Pop Pop that I would do the painting which I really did not feel like doing as long as he would push the fluids and eat which he did not feel like doing.
Luke is having some intermittent pain with his legs and as I mentioned before I think it is lack of use since after school he is very tired and usually wants to just plop. So, he and I decided to try to walk in the mornings to get our daily exercise before we are too tired at the end of the day. Tomorrow is our first attempt so we will see. Luke will be up bright and early but for me to get up is another story! We are also exploring some swim classes to keep his legs moving and increase his activity.
The girls are doing well too and I will try to update their webpages as well when I catch up on my projects tomorrow.
Luke had a rough time today with his violin lessons and he said he just could not remember the song he has been playing for almost a year now. He had trouble deciphering the tones and of course, I fear that he may already be experiencing delays associated with the protons. I guess only time will tell and there is not much to do about it but love him and keep praying.
Love to all and thanks for your continued prayers.
Nicole
Tuesday, November 2, 2004 7:18 PM CST
Well as you can see from the picture - there was no Woody or Jessie, but instead we had Captain Hook, Belle & a Ladybug.
Actually I am going to pull up the pictures from last year because Alexis was Belle then too and 2 years ago Luke was Captain Hook (yes, it was a tight squeeze but he managed!)
The kids all had a grand time at their halloween parties as well as trick or treat. We even got to hang out with our friends Friday night at their annual hotdog halloween party - new for us but it was a grand time!
The kids are loaded with chocolate which is both Luke & my favorite; Alexis prefers the tootsie rolls, lifesavers & sweet tarts and Isabella would take anything. John has been really good about staying away from it!
We had a nice weekend complete with a visit to Pop Pop. Unfortunately, he is being a little stubborn in doing what he has to do, such as pushing fluids etc. He is quite swollen in his ankles and very tired all the time. He is diligient in his therapy but of course, it takes its toll and then he just wants to sleep.
I had to finally finish painting my shutters this weekend because I make a deal with Pop Pop that I would do the painting which I really did not feel like doing as long as he would push the fluids and eat which he did not feel like doing.
Luke is having some intermittent pain with his legs and as I mentioned before I think it is lack of use since after school he is very tired and usually wants to just plop. So, he and I decided to try to walk in the mornings to get our daily exercise before we are too tired at the end of the day. Tomorrow is our first attempt so we will see. Luke will be up bright and early but for me to get up is another story! We are also exploring some swim classes to keep his legs moving and increase his activity.
The girls are doing well too and I will try to update their webpages as well when I catch up on my projects tomorrow.
Luke had a rough time today with his violin lessons and he said he just could not remember the song he has been playing for almost a year now. He had trouble deciphering the tones and of course, I fear that he may already be experiencing delays associated with the protons. I guess only time will tell and there is not much to do about it but love him and keep praying.
Love to all and thanks for your continued prayers.
Nicole
Wednesday, October 27, 2004 6:37 AM CDT
Luke has had a good week so far. He spent some time last week with his Pop Pop as he continues to recover from his health conditions; played at the Crayola Factory during a Penn State Lion Sighting; and walked in the Coplay Halloween Parade. He also spent some time with his Aunt Judy and Uncle Eddie for his 1st sleep over in New Jersey.
We were a little unsure how he would be since he can be quite a handful, but he was picture perfect and thoroughly enjoyed working with Uncle Eddie in his workshop (until the noise got too loud) and helping Judy make homemade playdough creations.
Luke is enjoying kindergarten although he sometimes feels that he is missing out on something more exciting at home or with the girls.
We are really trying to fall into a new norm once again for our family as we continue to adapt to the ever changing journey that is life with cancer. Sometimes it can be all consuming; some days it is better forgotten.
We realize we have so much to be thankful for, and especially are reminded of this as we approach Thanksgiving. But, I have to admit I do long for days that are really just plain BORING!
Thanks for all your continued prayers and please remember so many of our friends who continue their own personal battles. Please remember Luke's Pop Pop and his Great Grandmother.
As for us, we are heading out this week as the ladybug, Woody and Jessie. Enjoy the pumpkins!
Nicole
Sunday, October 17, 2004 4:35 PM CDT
Life keeps moving for us and some days faster than I can keep track. If there were just a couple more hours in the day, or better yet if my kids went to bed without me once in a while, I might have some time at night to catch up!
We had a great time at the Pumpkin Patch with Esther, Jane, Julius and of course Alexis & Isabella. We met Jane & Esther last year as they are the quilt ladies who make quilts for the Foundation to give to children with cancer in our area. We had a great time and came home with lots of BIG and little pumkins. Despite the cold, we loved it!
Actually, this weekend we have been sort of homebodies anyway. It was a nice end to a crazy week.
Luke's Pop Pop had a serious fall and was hospitalized with a bleed on the brain as well as some other heart issues. IT was pretty scary for a while and we are certainly not out of the woods, but we are happy to report that Pop Pop is out of ICU now.
Seems no matter what we cannot escape the hospital. To add to the hospital frequency, Luke's Great Grandmother, Grammy Bert, is also still in the hospital for congestive heart failure. She was improving and then stopped eating. Now, she is starting to turn a corner but just needs a lot of TLC and assistance.
This week Luke also had to get his Flu Vax and that was quite the trick. Before Luke agreed to get his shot, his doctor and 2 nurses had to get theirs. Luke still had to be "tricked" to get his and screamed and cried well after it was all over. He is quite the drama queen.
We also however, were able to celebrate the Four Diamonds Fund Dance Marathon Kickoff at Penn State Lehigh Valley. For the second year, Luke is Penn State Lehigh Valley's Thon Child and we are so proud of all the hard work these students do to raise money and support children with cancer. Selfishly, I wish more the funds stayed locally, but I know that the Four Diamonds Fund does a lot to help children treated from Hershey Medical Center and for this we are so happy to be a part of Thon again this year. Jacqui, Dave & Christina are so dedicated and so loving to Luke -- they are the BEST!
Luke has been gearing up for Halloween and his birthday (although that is still 2 months away). Seems he lives holiday to holiday but really I think he just lives for attention. Today John and I were pulling our hair out because everything we asked Luke do to met with a big mouth, much negativity and cries and whines of nonesense. Later my sister shows up and with relatively no effort she has all 3 kids laughing and smiling and sitting down listening to a story. Some days I wish I was the AUNT!
In confidence I shared with John the other day that perhaps I would have been better off never marrying and having kids and just giving my life over to the service of others. Not to say that I do not LIVE and LOVE for my kids or my family, just that at times like this I question my effectiveness as a parent. Surely, I cannot be that pathetic at this job yet my kids still answer me back, show little to no respect for me, really do not listen to what I say and at their ages of 2, 4 and almost 6 still cry and whine ALOT.
On a high point, Luke has been thriving: He loves school (unless he thinks there is something better going on that he is missing out on), he is feeling really good, his MRI and vision exam were stable and for the most part, he still is the love of our life.
I thank everyone for their continued prayers and help and well wishes. Despite my complaints and some days there are a lot, I would be lost without LUke and his sisters and despite the hardships that are ongoing, I wouldn't trade our journey, most of the time!
Nicole
Sunday, October 17, 2004 4:35 PM CDT
Life keeps moving for us and some days faster than I can keep track. If there were just a couple more hours in the day, or better yet if my kids went to bed without me once in a while, I might have some time at night to catch up!
Actually, this weekend we have been sort of homebodies anyway. It was a nice end to a crazy week.
Luke's Pop Pop had a serious fall and was hospitalized with a bleed on the brain as well as some other heart issues. IT was pretty scary for a while and we are certainly not out of the woods, but we are happy to report that Pop Pop is out of ICU now.
Seems no matter what we cannot escape the hospital. To add to the hospital frequency, Luke's Great Grandmother, Grammy Bert, is also still in the hospital for congestive heart failure. She was improving and then stopped eating. Now, she is starting to turn a corner but just needs a lot of TLC and assistance.
This week Luke also had to get his Flu Vax and that was quite the trick. Before Luke agreed to get his shot, his doctor and 2 nurses had to get theirs. Luke still had to be "tricked" to get his and screamed and cried well after it was all over. He is quite the drama queen.
Luke has been gearing up for Halloween and his birthday (although that is still 2 months away). Seems he lives holiday to holiday but really I think he just lives for attention. Today John and I were pulling our hair out because everything we asked Luke do to met with a big mouth, much negativity and cries and whines of nonesense. Later my sister shows up and with relatively no effort she has all 3 kids laughing and smiling and sitting down listening to a story. Some days I wish I was the AUNT!
In confidence I shared with John the other day that perhaps I would have been better off never marrying and having kids and just giving my life over to the service of others. Not to say that I do not LIVE and LOVE for my kids or my family, just that at times like this I question my effectiveness as a parent. Surely, I cannot be that pathetic at this job yet my kids still answer me back, show little to no respect for me, really do not listen to what I say and at their ages of 2, 4 and almost 6 still cry and whine ALOT.
On a high point, Luke has been thriving: He loves school (unless he thinks there is something better going on that he is missing out on), he is feeling really good, his MRI and vision exam were stable and for the most part, he still is the love of our life.
I thank everyone for their continued prayers and help and well wishes. Despite my complaints and some days there are a lot, I would be lost without LUke and his sisters and despite the hardships that are ongoing, I wouldn't trade our journey, most of the time!
Nicole
Monday, October 11, 2004 4:34 PM CDT
Ahh, isn't the cold chill refreshing in the morning.
To recap Luke's weekend, he had a busy one.
First off, he loved Sharktales. I think he dosed off, but sometimes those movies get too long, you know! He met up with Pappy & Grammy for ice cream at Friendly's and was quick to point out that Pappy finished Alexis' ice cream too.
Saturday night we watched Penn State play a good game against Purdue, too bad they lost. Sunday we helped Isabella celebrate her 2nd birthday (it is actually Tuesday 10/12)and we got to spend time with Luke's Pop Pop & Grammy and Aunts & Uncles who he adores seeing. Sunday night Sylvia gave us a much needed rest when she took Luke & Lexi for a night out and heard Witness at St. Jane's and then enjoyed ice cream at Friendly's, again! Sylvia is so wonderful and even played "which of these things is not like the other" with their drinks. Of course, Luke's was different in that he got milk.
I love to see him so happy and enjoying life and the company of others. I was telling Sylvia that when I was little, my parents had friends, Arthur & Suzanne, who would come visit my sister and I and shower us with attention and sometimes gifts. I fondly remember a Jack & Jill toy with marbles and a hill that I got one year. Even though Arthur & Suzanne eventually divorced and we did not see them anymore, those are some of the best memories of my childhood.
Despite our best attempts, I realize that our kids do not appreciate us when they are growing up. I guess I did not appreciate my parents either, or the sacrifices they made on my behalf, or despite not having the newest clothing, I was always clothed and got some great adventures in Disney and other places that others did not. I guess I realize that when my son tells me that I am so mean, it is really a compliment and that one day, he will be so happy that I was so mean because I raised him to be self-sufficient, independent and hopefully a respectful and considerate young man.
I still long for those days when Luke will tell me he loves me and I am the best Mommy in the Whole World as he did not too many years ago, but I also realize that while he is growing up and finding his way, I need to find my own way too as his mom. That to me is realizing that it isn't always laughs and birthday cakes and smiles and fun, sometimes the hardest part of parenting is the parenting.
We are learning together I suppose, but I must admit that when I am provided the time to reflect and I realize the need for improvement in my parenting style, I also realize that despite me or my parenting, our kids are naturally amazing and Luke continues to keep me on my toes amazed.
Love to all and special prayers for all those in need and with special concerns and decisions. Our thoughts to Dechlan who has had a rough couple weeks (and his Mom & Dad) as well as Kyle.
Our Special Sylvia is the queen of the prayer chain and I ask for special blessings to her group as well because they remember so many in their prayers and make the time to lessen the burden of those around them.
HOPE RULES! Nicole
Thursday, October 7, 2004 1:52 PM CDT
STABLE.
Isn't it funny how such a simple word can bring such joy. In fact, I was cracking myself up on the ride home thinking of acroynms for the word: Safe Time After Brain Lesion Emergency
Although the reprieve is only for 3 months until our next exam and next MRI, it is nice to breathe and know that we can enjoy the coming holidays with a sigh of relief. So many days we have prayed for such calmness in our lives with the normal adversities of raising children. Guess we are thankful to only have to work through fights over violin lessons and mouthing off and crying and whining. Ahh, the pleasures of parenthood.
Thank you all for your prayers and well wishes.
Luke is excited to go to SHARKTALES today with Aunt Pam and Alexis. A normal day in the life....such pleasure.
Thanks Nicole
Monday, October 4, 2004 3:18 PM CDT
Today we had the MRI. Unfortunately, Luke was unable to do it without sedation although he gave it a great try but his tickling nose and the itch on his head not to mention the cough from no where go the best of him and we had to sedate him.
Of course then, he required a lot of sedation for some reason to go down and woke up during the MRI requiring more sedation. All in all, he took 2 hours to wake up and was groggy and drunky until he fell asleep again on the drive home. He is still currently sleeping.
So, although disappointed in the MRI process and the fact that we lost the entire day while he recovered and did not make it to the zoo, the important part is that we get the pictures we need and can figure out where we are now. And, for that news we will wait till Thursday till he gets his vision evaluated and then sees the neuro-oncologist.
He has been doing well. Behaviorally, I think sometimes he needs Boot Camp along with his crazy sisters but I guess I am just losing patience or frustrated in my own inability to control a 5 year old. Either way, I hope that changes.
My head is in excruitiating pain from the non-eating migraine I created when I decided to fast with Luke today and then try to catch up food-wise on junk. Live and learn.
Thanks for your well wishes and prayers. We hope for good news as always, for we know in this journey, it is all we have to hope for!
Love to all. Nicole
Thursday, September 23, 2004 8:50 PM CDT
Well, the days are moving quickly and some times it is a balancing act between not getting too busy but keeping on top of everything. I think I just need a good 4 days to get caught up and then another 4 days to catch up on sleep.
Luke is doing very well in Kindergarten. He loves it. Truthfully, he gets quite tired by the end of the day so we try not to plan too much. His violin lessons have been going okay but I am waiting for the tiredness to take its toll.
Mean Mommy that I am, I have also tried to institute a rule of no TV after dinner and lots of quiet time with book reading. Sometimes it is hard to have them get individualized attention to increase their own needs and projects because the three of them always want to do what the other is doing. I still would like to get them alone once in a while.
Luke played the violin at the Clinic's First Annual Talent Show last week and what a fun time that was for him. He says he gets nervous sometimes but his Aunt Suey told him if he ever gets stage fright to picture the audience in their underwear. He said he hasn't needed to do that yet, but isn't that a great trick Mom. Leave it to Aunt Suey -- she always teaches him the finest things in life like how to fart under your armpit.
Anyway, lots of time spent with the Aunts has a way of coming back to bite you anyway. My kids love anyone and being anywhere than with me. Ever notice how pasta tastes so amazing at Aunt Sues? Or how great it is to be outside with Aunt Pam? Where the same tasks or food is just yuk at home. I have to admit that sometimes, it stinks being the Mommy. But of course, when they are tired or sick and only want their Mommy -- what could be finer.
I find myself immitating my mother a lot and that in and of itself is frightening. But, although my mother and I are somewhat night and day, oil and water, sun and moon, I think that generationally speaking we have been good about keeping those important things handed down: recycling, not wasting food (I still tell my kids about the children in Ethiopia starving. Are they still starving in Ethiopia?), taking responsibility for your actions and the kicker which I actually used to the entire Kindergarten class today during lunch duty "If you have nothing nice to say, do not say anything at all". It is scary how these things just stay with you.
Speaking of staying with you, it seems that every time I scold Luke he cries. Cries because I am mean, cries because there is no TV, cries just because I am his mother. Low and behold one day he was really being fresh with me -- his mouth was getting quite away from him. I told him several times to stop and finally resorted to you will spend the day in your room writing on a piece of paper 100 times "I will not talk mean to my mother". Our friend Jackie said she remembered having to do that one time and it really stuck with her and she never let it happen again. Not Luke, his reply was: (in a crying voice of course), "But Mom, I do not know how to write all that".
John is right. Many times my kids miss the point. I think they are so intelligent, I try to have intellectual conversations only to realize, they are more fixated on what will happen if they don't than what I really want them to do. Ahh, this parenting thing really needs a handbook.
But we move one day at a time and so far, we have made it.
Luke is feeling well except as I mentioned the tiredness. He did mention an eye problem but only one time. Also, he goes for an MRI in 2 weeks so either way, we will soon find out what is going on.
Life has a funny way of moving forward even when you aren't ready. Lucky for us, we have been given the many opportunities to share our insights on the crazy journey that is our life. Sometimes I speak at length about my views on life and dealing with a major incident such as Luke's cancer and it seems almost such a part of our lives I cannot remember when we weren't a cancer family. But, I know too that many families deal with this alone or in silence because they live with the fear and grief of how this could be happening to our family. It is not easy. It is a choice every day to move forward into uncertainty and to put fear aside and enjoy the moment. I am a planner, an organizer but I find in this journey, that is better left for meetings and appointments. As Ferris Buehler says, Life moves fast but if you don't stop to see that is happening it will just pass you by.
I pray every day for understanding and clarity and wisdom. I pray for strength to say and do the right things with my children and in my life to make it better along this journey. I am consumed in raising awareness and luckily have met a lot of great friends along the way. As we near the end of September, please celebrate with us the heroes in our children, all of them, but especially those who continue their courageous fight over cancer. Wear your gold ribbons. Get your gold & gray bracelets. Make a statement. After all the journey is only half the fun - it is the stops you make that make it exciting.
Love to all, especially Kennedy, Michael, Caitlin, Dechlan, Gabriella, Emma, and our very own PopPop.
Tuesday, September 14, 2004 6:41 AM CDT
Well the big news for the hour is Luke lost another tooth. Yesterday I was lunch mom for Luke's class and after he ate his turkey on wheat his tooth stuck out and was bothering him. Truthfully, I am glad the tooth made movement for it has been quite loose for some time now. I took a look at it and convinced Luke to let me pull it out. All I had to do was grab it and it came right out. His class was so excited and engaged by this event.
Now you would think Luke would be ecstatic to check his pillow this morning. He forgot. Then after checking he was disappointed to find only $1 under there. "Mom, I already got two $1 last time". So I inquired what he would like to receive thinking that I was raising a banker or such. But of course true to Luke's self he answered "Do you think a computer is too big to stick under there?"
Needless to say I got a big chuckle today and told Luke next time to right a list of suggestions for the Tooth Fairy so as not to be disappointed but to keep in mind that she flies in so it cannot be too big.
Luke has really been enjoying Kindergarten and gets up very early to get ready to go. He would start at 6:00 am if they would let him.
Luke's energy has been quite well also. I feared that a full day of school would really tucker him out and sometimes he does take a nap. But, for the most part he has been remarkably energetic after school and ready for bed between 7:30 & 8:00 pm.
His attitude and behavior have been so much better since we returned from BOston and increasingly getting better. I'd like to think that I have initiated some super parenting style that just cannot fail but truthfully I think he is just growing up and really is maturing in the person he wants to be. Plus I try to remind myself on a regular basis that it is all response to these little people that can either make or break the fire. My attitude is important and sometimes when I am tired and overworked and stressed my fuse is short but I continue to remind myself of a "theory of Life" presented by Charles Swindoll entitled "ATTITUDE" ........."The longer I live, the more important I realize teh impact of attitude on life. Attitude to me is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearaence, giftedness or skill. It will make or break a company ... a church ... a home. THe remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past ... we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude... I am convinced that life is 10% of what happens to me and 90% how I react to it. And so with you ... we are in charge of our Attitudes"
And so along that vein, today I choose to be more patient, to be more tolerant and to be more humble. Each day I am asked "How do you do it, you seem so strong so focused...". Truth is it is just attitude. I made a decision not too long ago that I could not change what happened to Luke nor the path that his tumor will take. But, I can do all I can for him, love him till he cannot stand it anymore and try to have a good attitude to get through the lows of lows and all those difficult times that creep up.
Thank you all for helping me stay on track. Please remind me when I lose focus and need more patience and a reminder of my attitude mantra and please continue to keep all our children, especially the roughly 12,500 each year that are diagnosed with cancer. This month is Childhood Cancer Awareness Month and remember that still today, cancer kills more children than any other disease.
Love to all Nicole
Tuesday, September 7, 2004 3:29 PM CDT
AWESOME.
That was the word Luke used to describe his first day of Kindergarten. It makes me so happy I could burst. He could not report on what they did today other than having lunch in the gym, his job was trash man and that they read a book. But he loved it. Every bit of it. All 6 3/4 hours of it. Whew!!!
And, although he asked if he could take a nap he did not crash yet. I think that 5 days will take its toll, but we are going to space out our after school activities so that he has down time as well. He is still quite tired from the radiation stuff.
Today we celebrated the First day of School with Rita's Ice and purchased a new Backpack and Lunch Bag. Luke saw it and just had to have it -- go figure.
Next MRI is set for October 4 and I would be lying if I wasn't anxious. It is a necessary evil. Of course I always hope that there will be an MRI where the tumor has completely disappeared but reality sets in and I realize that probably will not happen. However, this could be the one where it looks bigger so that is an issue as well. He has not been complaining of any new symptoms so I hope all is well.
Yesterday I learned of another little man (age 6)who completed a different type of radiation in December of last year (9 months ago) and has had growth since. That would be devastating. There is no real tried and true avenues if that happens to us - just experimental.
So enough worrying -- Luke is looking great and feeling great and I am thrilled.
Keep up the prayers for Luke's Pop Pop. He is still not doing that great. His platelets are still dropping and were last reported at 11. It has made him quite sick etc and his heart rhythm has been crazy too making his whole body out of whack. He could use a little extra blessings his way as he is such an amazing and wonderful man -- we want him back to his old self real soon.
The last week we haven't had many adventures. We hit the Great Allentown Fair. Visited the cows & pigs (Luke thought the smell was gross but Alexis Loved those piggies), ate ice cream and junky fair food and called it a night. BUt, we have all been busy nonetheless but getting back on a schedule is going to help a lot. I felt a little (well, actually a lot frazzled lately) and it is in part because I did not feel I was accomplishing anything. I am very task oriented and this way I know what I need to do for that day and it seems to flow much better.
So check out the new pictures and keep in touch. Luke loves the attention.
Nicole
Saturday, August 28, 2004 8:11 PM CDT
Time keeps escaping me and I feel a little lost in the shuffle of keeping up with the things I need to do, the things I want to do and all the stuff in between. But, as Ferris Buehler says, time moves pretty fast around here. If you do not stop to enjoy it, it will just pass you by.
And so, we continue to enjoy our environment and community. Recent adventures took us north to the Crayola Factory and Pez Museum. We had an amazing time playing with crazy dough and making slides, using dinosaurs for a quick mini video and then drawing on huge glass windows with window-markers. Lets not forgot binding our own books and building a human sandwich as well as sidewalk chalk drawing and making our own hats. It was a busy morning which required dire rewards. After finding Donkey & Shrek Pez Dispensers (LUKE IS AN AVID PEZ COLLECTOR!!!) at the Pez Museum Shop, we headed straight for the Purple Cow Ice Cream shop to sink our teeth into decadance.
Lexi loved the bubble gum ice cream which folks was just vanilla with you guessed, bubble gum bits mixed in. Luke went for just plain chocolate, while Bella and I enjoyed Black Forest Cake.
Jackie joined us on our adventures and she was a huge help to keep the kids happy and together. Plus, they all love her to bits and pieces!
It was the most amazing day and afterwards we enjoyed lunch with Pappy. It was a perfect day full of laughter, smiles and happy times.
Of course, all good things come to an end and by mid-afternoon I was having my car towed, spending hours waiting for mechanics and eventually, arriving home after 4 hours of mechanical nightmare. But that is another story.
Luke also recently enjoyed visiting his kindergarten class, meeting his teacher and the other 12 kids in his room. I think it will be an amazing year of discovery for him. The schedule is well thought out and includes lots of play time and hands-on time with learning centers and story time and fun. It is somewhat exciting and sad for the mother here, in that I know Luke will thrive in this environment, but it is a slow reminder that he is growing up and no longer needs his mom quite as much. To me, I will always need my Luke. If for nothing else than to constantly correct me or interrupt me or make me smile.
I made a deal with LUke a while back one day when I was tired of yelling. I told him that when one of us gets a little crazy and starts yelling or being upset, it is time to put on our Groucho Marx glasses to make each other laugh. Now of course I had forgotten somewhat that I made this deal since it was almost a year ago, but Luke did not. He came to me the other day asking if I was mad at him -- not really I replied. So he put on his glasses and we both just had the best laugh. Today, I think I need to find those glasses again.
It is really just me today. It is one of those days where you are in a fog, my head hurts, I have lots to do and no energy to do it, I feel a little overwhelmed with work and a little anxious for the upcoming month. So, my family took the brunt of it today. In some ways it was positive however, I did discuss with them the need to set up a schedule and rules for the year, less TV, more reading and creativity, quiet time, practicing our music lessons, etc so we all know what we need to to do and what is expected of us. In truth, it keeps sanity.
But, as the summer winds down, I still have lots of pictures to print and scrapbooks to fill for we did live up to our goal: We had the best summer ever. Luke was feeling great and he enjoyed this time immensely. But, the best of all is the precious memories we made together as a family. More happy memories to carry us through the bumpy times which may come. More happy memories to block out the sad past. More happy memories to reinvigorate our lives, our souls and our hearts with hope and promise and love.
Remember my fair friends that September is PEDIATRIC CANCER AWARENESS MONTH. Go out and get yourself a gold ribbon and wear it with pride. For it is only through awareness that we can make a difference and believe me, there is one little cancer survivor who has made a huge difference.
Love to all! Nicole
Saturday, August 28, 2004 8:11 PM CDT
Time keeps escaping me and I feel a little lost in the shuffle of keeping up with the things I need to do, the things I want to do and all the stuff in between. But, as Ferris Buehler says, time moves pretty fast around here. If you do not stop to enjoy it, it will just pass you by.
And so, we continue to enjoy our environment and community. Recent adventures took us north to the Crayola Factory and Pez Museum. We had an amazing time playing with crazy dough and making slides, using dinosaurs for a quick mini video and then drawing on huge glass windows with window-markers. Lets not forgot binding our own books and building a human sandwich as well as sidewalk chalk drawing and making our own hats. It was a busy morning which required dire rewards. After finding Donkey & Shrek Pez Dispensers (LUKE IS AN AVID PEZ COLLECTOR!!!) at the Pez Museum Shop, we headed straight for the Purple Cow Ice Cream shop to sink our teeth into decadance.
Lexi loved the bubble gum ice cream which folks was just vanilla with you guessed, bubble gum bits mixed in. Luke went for just plain chocolate, while Bella and I enjoyed Black Forest Cake.
Jackie joined us on our adventures and she was a huge help to keep the kids happy and together. Plus, they all love her to bits and pieces!
It was the most amazing day and afterwards we enjoyed lunch with Pappy. It was a perfect day full of laughter, smiles and happy times.
Of course, all good things come to an end and by mid-afternoon I was having my car towed, spending hours waiting for mechanics and eventually, arriving home after 4 hours of mechanical nightmare. But that is another story.
Luke also recently enjoyed visiting his kindergarten class, meeting his teacher and the other 12 kids in his room. I think it will be an amazing year of discovery for him. The schedule is well thought out and includes lots of play time and hands-on time with learning centers and story time and fun. It is somewhat exciting and sad for the mother here, in that I know Luke will thrive in this environment, but it is a slow reminder that he is growing up and no longer needs his mom quite as much. To me, I will always need my Luke. If for nothing else than to constantly correct me or interrupt me or make me smile.
I made a deal with LUke a while back one day when I was tired of yelling. I told him that when one of us gets a little crazy and starts yelling or being upset, it is time to put on our Groucho Marx glasses to make each other laugh. Now of course I had forgotten somewhat that I made this deal since it was almost a year ago, but Luke did not. He came to me the other day asking if I was mad at him -- not really I replied. So he put on his glasses and we both just had the best laugh. Today, I think I need to find those glasses again.
It is really just me today. It is one of those days where you are in a fog, my head hurts, I have lots to do and no energy to do it, I feel a little overwhelmed with work and a little anxious for the upcoming month. So, my family took the brunt of it today. In some ways it was positive however, I did discuss with them the need to set up a schedule and rules for the year, less TV, more reading and creativity, quiet time, practicing our music lessons, etc so we all know what we need to to do and what is expected of us. In truth, it keeps sanity.
But, as the summer winds down, I still have lots of pictures to print and scrapbooks to fill for we did live up to our goal: We had the best summer ever. Luke was feeling great and he enjoyed this time immensely. But, the best of all is the precious memories we made together as a family. More happy memories to carry us through the bumpy times which may come. More happy memories to block out the sad past. More happy memories to reinvigorate our lives, our souls and our hearts with hope and promise and love.
Remember my fair friends that September is PEDIATRIC CANCER AWARENESS MONTH. Go out and get yourself a gold ribbon and wear it with pride. For it is only through awareness that we can make a difference and believe me, there is one little cancer survivor who has made a huge difference.
Love to all! Nicole
Thursday, August 19, 2004 10:28 PM CDT
I can finally admit today that I am tired. But, there is so much more to be done. Family, kids, work, house, life -- good thing my neurosis keeps me sane!
We have been busy keeping up our crazy pace and knocking more items off our list. Luke, Lexi, Bella, Aunt Pam and myself went to Dorney Park on Monday and had a great time. Luke's friend Elizabeth spent part of the day with us as well and her family.
Luke was apprehensive about the rides, and the water, but eventually he tried them and loved it all, especially the wave pool and octopus.
We stayed much longer than I ever thought they would last and all in all the weather held out and made a nice day.
Recently we have been gearing up for school, organizing closets, buying notebooks and pencils. Today, we picked up a few more items in this movement and hopefully soon we will head out school shoe shopping. Always a tedious (and expensive) endeavor, but an exciting time as well.
Tomorrow we are heading to the Crayola Factory and Pez Museum and hopefully, enjoy a nice lunch somewhere. Alexis is will be turning 4 on Saturday and we are all excited to help her celebrate this great day. Plus, as an extra bonus our friend Jackie will join us to Crayola and is celebrating her Sweet 16th birthday.
Luke has been doing very well lately. His tiredness is minimal and he has been full of energy and really doing well. It is almost a false sense of security as we know all so well how the rug can be pulled out at any moment. But wow, what an amazing summer we have spent together as a family and with the kids. I have loved every smile and every laugh and every headache I got after a full full day of going. I hope when you look at my latest set of pictures you will share my contentment in the beautiful joy of laughter and smiles on their faces.
In my heart I am especially proud of Luke for continuing to smile and laugh and joke despite the crazy journey so far. But, he is amazing and has a fighting spirit, never letting anything get him down.
Some days I wish I could freeze them in time and replay them over and over. He is so full of life and so full of questions. Every day I try to absorb as much of him as I can, like those smells that make you feel home.
Even as the summer comes to a close, I am so thrilled with the joy we have shared and the great moments that are life. Thank you all for sharing in them with us and we are praying daily for more of those in our future.
Please remember Luke's Pop Pop in your prayers as he has recently been dealing with low platelet complications. Also, please keep praying for our friends who continue their battles daily as well: Michael, Caitlin, Lauren, Ryan, Dechlan, Brenna,
Thursday, August 19, 2004 10:28 PM CDT
I can finally admit today that I am tired. But, there is so much more to be done. Family, kids, work, house, life -- good thing my neurosis keeps me sane!
We have been busy keeping up our crazy pace and knocking more items off our list. Luke, Lexi, Bella, Aunt Pam and myself went to Dorney Park on Monday and had a great time. Luke's friend Elizabeth spent part of the day with us as well and her family.
Luke was apprehensive about the rides, and the water, but eventually he tried them and loved it all, especially the wave pool and octopus.
We stayed much longer than I ever thought they would last and all in all the weather held out and made a nice day.
Recently we have been gearing up for school, organizing closets, buying notebooks and pencils. Today, we picked up a few more items in this movement and hopefully soon we will head out school shoe shopping. Always a tedious (and expensive) endeavor, but an exciting time as well.
Tomorrow we are heading to the Crayola Factory and Pez Museum and hopefully, enjoy a nice lunch somewhere. Alexis is will be turning 4 on Saturday and we are all excited to help her celebrate this great day. Plus, as an extra bonus our friend Jackie will join us to Crayola and is celebrating her Sweet 16th birthday.
Luke has been doing very well lately. His tiredness is minimal and he has been full of energy and really doing well. It is almost a false sense of security as we know all so well how the rug can be pulled out at any moment. But wow, what an amazing summer we have spent together as a family and with the kids. I have loved every smile and every laugh and every headache I got after a full full day of going. I hope when you look at my latest set of pictures you will share my contentment in the beautiful joy of laughter and smiles on their faces.
In my heart I am especially proud of Luke for continuing to smile and laugh and joke despite the crazy journey so far. But, he is amazing and has a fighting spirit, never letting anything get him down.
Some days I wish I could freeze them in time and replay them over and over. He is so full of life and so full of questions. Every day I try to absorb as much of him as I can, like those smells that make you feel home.
Even as the summer comes to a close, I am so thrilled with the joy we have shared and the great moments that are life. Thank you all for sharing in them with us and we are praying daily for more of those in our future.
Please remember Luke's Pop Pop in your prayers as he has recently been dealing with low platelet complications. Also, please keep praying for our friends who continue their battles daily as well: Michael, Caitlin, Lauren, Ryan, Dechlan, Brenna,
Thursday, August 12, 2004 5:14 PM CDT
Luke has certainly been surprising me lately. He is such a great helper and really very grown up. Sometimes he is a little too paternal with his sisters, but much more pleasant than a few weeks back.
He is doing amazing also. His nausea is much better and he is taking less naps and doing more in his awake time. He started reading and really loves Miss Kathy so much he sometimes makes her do work for 2 hours with him. She is just amazing.
Luke's violin lessons have been paying off as well. Today he played a very hard piece that he has been struggling with perfectly. In fact, he even played it with perfect table tops and pulled arm.
I am keeping quite busy as well. We just finished hosting the Pediatric Cancer Foundation's first Kick for Kancer on Tuesday and although exhausted, I am so thrilled with the day and its events. The kids had a great time and all our volunteers from the Whitehall Soccer Team had a super time as well. It was so full of laughter and smiles, I couldn't help but want to freeze time for them all.
We are really excited about increasing our support and sponsorship so we can grow and provide even more programs and activities for children with cancer and their families. Thanks to all our friends and family for their support with our endeavors.
Alexis & Bella are also keeping us very busy and as we gear up for school in a few weeks, we are continuing our list of must-dos for summer. Dorney is next week and the Crayola Factory and PEZ Museum (as most of you know Luke is an AVID collector and was quite disappointed to learn that the Das Awksfest which he did not to attend, had a day of toys where a vendor was selling hard to get PEZ dispensors.) He saved the article for next year.
Swimming is over and Luke has vowed to try it again next year. So hopefully, we will be able to take advantage of some winter swim at the high school and keep him motivated. In the interim, I am seeking some activities for Luke as he would like to learn to ride a horse, possibly golf (anyone know a cheap instructor) and maybe give karate a try.
Alexis is signed up for dance and of course, both will have their violins to keep them busy.
Love to all and thanks for your continued prayers and well-wishes. We are truly blessed to be enjoying this summer with Luke and the girls and really having some fun family time.
Nicole
Tuesday, August 3, 2004 9:36 PM CDT
The good news is that the vomiting has subsided for the time being. YEH. In fact, Luke's hair has started filling in and his need for the 2-3 hour nap every day has subsided as well. Not that he won't take one, but it is not a necessity. I do not know if that is good or bad, but for the time being it certainly helps give a sense of normalcy.
Every day is different though. In fact, some days I think I treat him too normal. He started swim class last week and we were doing good. At least until the teacher actually asked us to do stuff - crazy stuff like put our heads in the water and blow bubbles, or swim holding a kick board or even worse float on our backs. YIKES. Lots of stress here for my kids.
IN fact, obviously I missed the patience gene when they sorted my genetic code, because I just kept pushing Luke & Lexi to comply with the teacher. Of course, this only met with more resistance on their part, crying, yelling and finally threats from Mommy that there will be no more TV till school starts. After a few hours, I caved and told LUke that despite my disappointment, it was his choice if he wanted to take swimming or not and that I would respect his decision and his position on the water comfort level.
Fast forward to today. We are invited for a play date with a pool. Luke refuses to enter. Alexis cries when she enters. Floatation devices are no lure. 4 other kids frolicking in the pool are no lure. Finally, we break for lunch. Post lunch I encourage Luke into the pool with a ride in a raft/floater. He and Lexi & Bella float around and around and around. Then he wants out. Lexi takes to jumping into the pool into the other mommy's arms. (Obviously my original thinking about the parenting this is true; babies for you - amazingly grown up for others)
Well, not to be outdone by his sister Luke takes to jumping in and being caught and getting out to repeat it all over. By the end, Alexis did not want to get out and was actually trying to swim to the stairs. Luke had enough and went to rest. But, in the end I hope the experience makes swim lessons better tomorrow. We skipped today because Luke & Lexi did not want to go. Possibly, the day did not work as well as I thought or just the tiredness had set in. Last alternative was that a trip to Aunt Suey's was too good to resist.
Otherwise, we are moving a long enjoying the week. Vacation Bible School is this week and Luke & Lexi are having a great time reconnecting with preschool friends as well as enjoying the crafts and papers each morning. They learned yesterday to Love One Another and today to Accept One Another. Plus, Reuben & Rachel (the Ants at Bible Camp) do this great song called POWER UP. Luke & Lexi are really getting into it now.
Over all, things are good. Like a mean mom that I am, I am adopting a new chore list for the kids as well and can you believe it, I made Luke practice his phonic workbook today and play violin. Yikes, I better take some nice pills soon ...
Nicole
Thursday, July 29, 2004 11:29 PM CDT
After the dust has settled, and the house is quiet, I can sit down and reflect on the past week of adventure.
Luke still is experiencing some nausea vomiting issues. These mostly seem to be associated with smells of foods. This past Thursday we enjoyed the carnival rides of the Big Time. Of course, we returned to Roseto on Saturday for the procession and a family gathering. As soon as Luke smelled the steam from the chafing dishes, he threw up. And then continued to throw up again, and again and again. We sent him outside finally for fresh air.
Sunday he threw up again over some boiling water and Tuesday after eating carrots and smelling soup. But, hold on to your seats for today was my full day of vomit.
After getting near to no sleep, I rounded up the kids this morning bright and early for yet another adventure. Isabella and Alexis I dropped off at Pappy's & Grammy's and Luke and I headed to Eagles Training camp to sneak a peek at Donovan and Corell and get some autographs. After a nice morning of Eagles, we picked up the girls and headed off to McDonalds for lunch with Pappy & Grammy.
As we enter McD's, Isabella vomits on Pappy. Nice chunky milk vomit. Yummy. I quickly escort her out to the car to get some clean clothing. Not 2 minutes later, Alexis comes out to tell me that Luke is inside throwing up. I leave Alexis & Isabella and run back into McDonald's where Luke is vomiting clear fluid up onto the floor. Poor McDonald's patrons must have thought I was brining the worst stomach bug into the restaurant.
After I saddle the kids back out to the car, they all start crying because they feel fine now and want to go inside to eat. I re-entered McD's, ordered my TAKE OUT order and went to eat at the park. Of course, both kids feel great and went on to eat lots and lots of McDs food. Call it sun, call it tumor, call it bad driving, at that point I felt sick to my stomach!
Anyway, we have squeezed some fun into our vomitous days and tomorrow we hope to be on the 70 un side and enjoy Dorney Park & Wildwater Kingdom. Of course, if I do not get some sleep soon, I may cranky again tomorrow too. HAHAHA
Luke & Lexi started swim classes this week as well and although the water gets awfully cold by 6:00 pm, we have been enjoying those lessons and the swim strokes learned last year are slowly coming back to them. Thanks Aunt Pam for helping out with the lessons and Aunt Sue for occupying Isabella during lessons.
We are looking forward to enjoying our last month of summer vacation until we get back into the swing of things and schedules with school starting. Hopefully, that will all go well too.
So a great big thank you to Donovan and the guys at the Eagles for making what started out for Luke as "boring" into a really nice time with lots of autographs. And, thanks to all our friends and family who help us along and who help tolerate me when I am cranky too!
For more EAGLES pictures, check out our site: http://users.rcn.com/njronco/
Love Nicole
Thursday, July 22, 2004 6:38 AM CDT
My my how time flies when you are having fun. We have had a very busy week enjoying the sun and fun but I wanted to bring you all up to date on our progress.
Luke has been feeling much better with no complaints of headache for a week now. Nausea only associated with weird smells sometimes. I think I should just stop cooking!! HAHAAH
WE spent Tuesday at Knoebels in Elysburg. First time for us but we had a great time. Grammy and Pappy and Aunt Pam came along with Mommy and the kids which was a big help. Unfortunately Daddy missed again. At first Luke was a little apprehensive and stated he was not going on any rides and just going to sit in his stroller. Luckily, we quickly changed his mind. Plus, he loved the pool area and spent almost 3 hours shooting water pumps and splashing around. Great fun.
And the extra bonus was the lots of our friends were at Knoebels camping for a few days and we caught up with them too. Luke and Benjamin went on the old fashioned car ride 5 times in a row together. Although they did not see each other in a while, they immediately connected and bonded and had a great time. We also got to see Nickolas, Antonio, Austin, Elizabeth, Madison, Kolton, Nicholas & Allison. It was a lot of fun.
Luke made sure we did not leave without rounding up all the pressed pennies they offered at Knoebels and made sure that he put them right into his collection book when he got home. It was a long day but lots of fun.
Yesterday they spent the entire day with Grammy and Pappy and part with Aunt Pam while Mommy worked. I think Grammy & Pappy had enough grandchild time this week!!
So today we have violin lessons and lots of work around the house to get done. But once the work is finished, we are heading off to Roseto for the Big Time Carnival. Hopefully, Luke who normally is apprehensive at rides, remembers all the great fun he had last year on the rides and jumps in with both feet.
His reading classes are going very well and although it is part memorization and part sounding out, I am amazed how much he can read already. I am so proud of him and the advances he is making. I just wish sometimes, he did not worry so much and was more carefree. Although bite my tongue in a few years I probably will be wishing for the opposite.
Thanks for checking in. We are excited for school to start in another month, but have lots left on our list of things to do. Plus, these beautiful little girls keep me quite busy as well!!
Special prayers for our friends who have experienced some setbacks lately, especially Lauren and extra prayers for Michael as he continues to recover from his brain surgery.
Nicole
Friday, July 16, 2004 7:27 AM CDT
Luke did it...
He made it through his first cavity filling. Shame that it had to happen but there has been a slight suspicious spot between Luke's 2 back molars. Could not get a new film because the film part kept gagging Luke so we decided to go ahead and take care of it.
Luke was very nervous for days but he did amazing. First, he got some Nitrous Oxide but it really did not do that much (maybe because it did not stay on his nose very well). Anyway, then he did not want to keep his mouth open. But once we got the numby stuff done and the raincoat in around the tooth, I gave him hand signals to communicate. One finger -- more water. Two fingers -- suction. Thumbs up -- everything is ok.
He did amazing. Appointment was running late to start but since he was so cooperative, we were done in 35 minutes. So he has his first new filling (white of course!) and hopefully no more for a long time. Since he teeth are so close together this occurred between the teeth -- more floss I guess. HAHAHAHA
Anyway, that was our adventure yesterday. Today we actually hope to top that with some fun and the weather looks like it is going to cooperate.
I spoke with Boston on Wednesday and they concurred that the tumor is stable, in fact they thought one of the cysts looked like it was marginally smaller. Cool. The 3rd ventricle appears slightly larger as it did in April when they evaluated him. They have no explanation for his but we are keeping it in mind for next round. Luke will probably experience swelling in the next 3 months and we should expect that to appear on the next MRI as this is the customary time frame. So far so good and Luke's nausea/vomiting and headaches have greatly subsided. He still gets very tired and takes 2 hour naps every day but that is also to be expected.
We cannot believe there is only 1 more month of summer before school -- I am sure it will be a much needed distraction but I still have lots of things on Luke's wish list to cover this summer!
Thanks to Ms. Kathy for her reading classes with Luke. Already he has started to read to me. Amazing.
Love to all and thanks again. More later.
Nicole
Tuesday, July 13, 2004 7:29 AM CDT
Things had been going so well I cannot believe that already I am getting that aching pit in my stomach. For the past 5 days Luke has been complaining of nausea and stomach pain. This is the first time since protons that we have heard this. On July 2 he complained of a really bad headache deep in the center of his head and then nothing since...till now.
Usually complains of stomach pain followed by nausea and sometimes associated with eating somestimes not. Sunday he threw up after smelling boiling noodles. Gross. This morning as he awaited his breakfast he complained of head pain on the right temporal side of his head inside. He also felt nausea before even drinking his milk. He gets this sad look and says he is going to lay down.
This breaks my heart and is so unfair. I keep reading about more experimental drugs and combinations in France and wonder if I should have tried that first...but the risk of his vision was so pronounced I think after consulting almost the entire country before deciding, we did what we had to do to save Luke. I am content with that decision but when these things creep up I wonder if it matters anyway. AHAHHAHAHAHAHA
Maybe he stomach is just in disarray from all the junk, drugs, treatment, etc. Maybe ...
If you have any grand words of wisdom, let me know. Otherwise, I will keep pursuing answers to this enigma that is Luke.
I just learned that Alexandrea Downing, a beautiful 20 year old student at Penn State LV lost her battle with cancer on Sunday night. Please keep her family in your thoughts and prayers and if you wish to make a contribution, the following is from the newspaper: Services: memorial, 7 p.m. Thursday, St. Johns Towamensing Lutheran Church, 2915 Fireline Road, Palmerton. Call 6-7 p.m. Thursday in the church. Arrangements, T.K. Thomas Funeral Home, Palmerton. Contributions: United Cancer Research Society, 3545 20th St., Highland, Calif. 92346.
Love to all. I Believe in Miracles but I am still praying for a CURE! Nicole PS: Luke had a hot date with Aunt Pam last night which included Spiderman 2. He said he liked it and when he came home close to 10:00 pm. with his double-cheese-burger in hand, he relished that divine snack with the most content of smiles. That is pure pleasure!
Saturday, July 10, 2004 6:52 AM CDT
Sorry to keep everyone waiting but I have been so tired I just needed to step back.
Luke's vision examination showed that his vision is stable and in fact he tested 20/25 acuity in the right eye. While this an improvement since last time, it is not really worth much as it could just be a "testing" difference. Nonetheless Good News!
The MRI showed that the tumor is stable. The main carotid artery is still inside the tumor (I don't know that I expected it to move somewhere else, but...) and there is a deviation of the artery but that is unremarkable since the last MRI. The cystic portion and solid portions remain stable overall which is a little surprising to us as we really did expect growth post-radiation but this is a nice surprise.
We hope that come October, or even the January MRI we will start to see some decrease, but even if none occurs, I will be thankful for no growth. In fact, I actually get a little nervous about shrinkage with the artery and optic nerves inside the tumor that somehow it would shrink and strangulate those even more -- can you say BAD???
Overall Luke looks very good. His height was 3'8" and his weight was 58 pounds. They are a little concerned about his weight because this location tumor provides a propensity for obesity, but truly the extra 10 pounds came from those 2 weeks of steroids and never went away after he stopped the steroids. I think his face is a little thinner and overall he looks wonderful. He has grown a little in height too: 1.5 cm. in about 3 weeks.
We have tried to fit in some fun around all these appointments too: swimming, playgroups, time with Pappy & Grammy, movies with Aunt Pam.
Thanks for the continued support. We are looking forward to the Aug 10 soccer camp (www.cancersupportgroup.org) and more adventures this summer!
By the way, Luke's 2 top teeth are loose now too and he is getting his 2 top 6-year molars. He does have a small cavity area between his 2 back molars, but once we get that fixed, he promised me no more cavities. Now, if we could just find dental insurance. HAHAH
Nicole
Tuesday, July 6, 2004 9:33 PM CDT
So to sum up our fabulous vacation I will recap the end of the trip. On Friday we sadly said our goodbyes to all our old friends and new friends at Camp Sunshine, made our worry dolls, packed the car and head off to Attleboro, MA. We arrived in mid-afternoon and had a great time catching up with Alexia & Isabella about their recent happenings. It did not take long for them to warm up again to us and adjust to Alexis, Isabella and John. In fact, Alexia cuddled up on the couch to John almost immediately.
Anna & Mark at the greatest of hosts and always do so much for us. They prepared an amazing lobster dinner for us with the biggest lobsters you have ever seen. In fact, I kept a claw for a keepsake and once I get a ruler out I will post a picture. The lobsters were 5lbs. and although it was sad to think they lived their entire lobster life to become our dinner, they were mighty tasty!
Together we all watched the coolest of hail storms with gumball size hail that melted 5 minutes later in the heat. Saturday we helped them set up for their 4th of July barbecure and they cooked and cooked all day with lots of family and friends. If any of you are familiar with Greek families, they love to eat and they are amazing people who just embrace you immediately and love you like family. We are truly blessed to have them in our lives.
Saturday Luke did not feel very well and started complaining of a headache deep in his head. He kept himself out of commission most of the day laying on the couch and napping. Honestly it ruined most of my day worrying about something that probably wasn't worth worrying about and something we had no control over but just makes this terrible battle all the more real when things had been so good. Luckily, he felt better the next day and hasn't complained since.
John and I treated ourselves to a hottub soak after we put the kids to bed and finally relaxed in quiet. Sunday we watched the Greeks win the World Cup against Portugual and of course ate again! Finally, we bid our goodbyes and headed home Sunday night. It was hard to leave -- first because we love them all so much and they are truly family and take such good care of us; second, of course because we had a long long drive home. But, since we left around 5:30 and it is a 4 hour trip,we did get to see lots of fireworks in lots of different states. Luke had some difficulty seeing them because by the time we pointed them out those darn trees lining the highways got in the way.
We arrived home, brought all our stuff inside and then went to bed. Monday provided a day of unpacking, yard work, housework and recouping just in time to get some sleep before todays early early morning adventure into the City for Luke's MRI.
We will not have any results till Thursday and I Fed Ex them out to Boston today as well for their review next week. Luke went to sleep easily today with minimal anesthesia and I think next time we will try for him to do it awake. He is old enough now and experienced enough that I think he will be golden!
The day would not have been complete without a trip to the Disney Store and lunch at California Pizza. Finally, we came home and relaxed. It was a long day getting up at 4:30 a.m., driving; waiting; eating; shopping.
Thursday Luke has appointments with the neuro-opthalamologist and neuro-oncologist but the results of the MRI at this point are not really indicative of anything substantial. On a good note however, we will have his vision evaluated and see what is cooking there. I think he is doing great. Also, I took a peek at the MRI films and in my completely biased, uneducated and unscientific opinion, everything looked stable. I keep hoping I will look at an MRI film and not see a tumor and it always strikes me in the pit of my stomach how large his tumor is complete with those crazy cysts, but God willing, he can live a long life with that ball inside and that can be ok too.
Tonight before bed I had to punish Luke for hitting his sister in the stomach. The punishment was he had to go to bed alone where he is accustomed to and really likes to have Mommy lay with him until he drifts off. Finally, Daddy stood at his door until he fell asleep and that was acceptable to him. Seems to simple really and hardly a punishment but it broke my heart to carry out. Poor little man's life can be so rough.
Thanks for the continued prayers and support. A special thanks to Ms. Kathy for keeping Luke in her thoughts and taking on the reading challenge. We love you!
I have attempted to put a link on this site to some extra pictures for your viewing pleasure. In addition, please check out the Pediatric Cancer Foundation website (www.cancersupportgroup.org) as we are soon posting information on the upcoming Kick for Kancer Soccer Day Camp for children with cancer and their siblings as well as relaxation portion for parents on August 10 9-11:30 a.m.
Love to all Nicole
Check out our link of photos: http://users.rcn.com/njronco/
Thursday, July 1, 2004 4:05 PM CDT
Greetings again from Camp. We are looking forward to the Wish Boat Launch tonight and Luke, Lexi & Bella's boats look awesome. It is an amazing event to witness as we all watch our children launch their boats and make wishes, while silently the parents all wish for a miracle and a cure.
Last night John & I enjoyed Karoke at Parent's Date Nite and I am sure the footage will haunt us for years to come. It was a great time.
Tonight is the Celebration Show and we are really looking forward to the photo presentation of all the activities our kids participated in that we may not have seen and a reminder of all the fun we have had as well. Of course, there have been tears and a reinvigoration of our need to increase awareness of pediatric cancer in each of our areas, and the challenges our children will face in the future.
We spoke to a volunteer today who is 19 and has been our of treatment since he was 10. He described his difficulties with math, and the fears he lived with as a young adult, but how he has become more responsible and he is the person today because of the ordeal he went through. He was so amazing I did not know if I wanted to marry him or adopt him.
We have been touched in so many ways by so many families and even by those who are single parents struggling in ways I cannot even comprehend. As tough as it is for our family, we have 2 parents to work through it together. Imagine three kids and only one parent...our hearts ache for these families are we are anxious to put together initiatives to make their livese easier too.
That is all for now. Love to all and thanks for your continued prayer and wishes. This has been very therapeutic for Luke and we are enjoying watching him have fun and be a normal kid for a while.
Love Nicole
Monday, June 28, 2004 2:56 PM CDT
Day One at Camp Sunshine is underway and as the song sings : dry your tears, erase your fears, full of love CAMP SUNSHINE, CAMP SUNSHINE.
We are having a great time reconnecting with old friends and making new friends. It always strikes me as odd that you love being at a place where you are reminded of the tragedy of why you are here -- we are all brain tumor parents and at the end of the day, that sucks.
But, we can come together and be a support and laugh and do Adult Super Dooper Blooper Games and watch our children do all those fun normal things that they should be doing every day of their lives.
So today, we are thankful again for another day with Luke and with Alexis & Isabella. A day to embrace our journey that makes us stronger and a day to celebrate the amazing strength of our children and the war they fight every day.
Today though, we are winning!@
Nicole
Saturday, June 26, 2004 6:40 AM CDT
Things are still busy around here and today is no exception. After a full week of fun, including our recent outing on Wednesday to the Trexler Game Preserve with Elizabeth and AJ, a trip to Uncle Eddie's church's carnival on Thursday, we have just had a lot of errands to run to get ready for CAMP SUNSHINE this coming week.
We are heading out tonight and will enjoy the week in Maine full of interaction, swimming, boating, masquerade party, and lots of family time.
We have also been busy getting ideas for some fun activities to initiate with the Pediatric Cancer Foundation of the Lehigh Valley, including a soccer and story time day camp on August 10. We think this will really be a good opportunity to provide physical activity, therapeutic activity along with interaction for children who spend a lot of time at the hospital or doctors.
If anyone is interested in volunteering or supporting this initiative, please let me know!
Luke has been really feeling good lately which we fear will give us a false sense of security. But, so far we are just trying to enjoy the normalcy of it and take it one day at a time. Sometimes, I think he is a little despressed about stuff anyway. You would think after all this time of poking and proding and medicine and treatments and nausea and headaches and vomiting and the like he would be running around happy as anything, but sometimes that is not the case. He gets frustrated and soured at the simpliest of things. This is always more frustrating as a parent because you do not know the cause. I think too, I want to see immediate satisfaction and results when in reality, it has only been 3 weeks since we have been back. LUke, with his infinite questions and intelligence, already fears that the treatment did not work so at his tender age of 5 he is waiting for the floor to fall out again, as it has so many times before. I think Camp will help that a lot too.
In the meantime, I will continue to pray for patience for myself and peace for Luke and we will continue on our path to have a great summer and enjoy all the fun activities in our local area. We still have a lot to cover!!
Love to all and we will try to update from camp. Check out our new pictures from the Game Preserve & Carnival too!
Nicole
Tuesday, June 22, 2004 8:05 PM CDT
What a difference a day can make; Luke was amazing yesterday and today.
We had a the great pleasure of going to Sesame Place yesterday and had a perfect day. We had breakfast with all the characters and got to spend time playing and enjoying the company of our friends the Gaspars.
Luke could not have been better. He was a little afraid of the parts of the park that I wanted him to go himself, tube ride etc., but he overcame and did it. Luckily, I have long arms and could sit in my tube with Isabella, while holding onto Luke's tube with one hand and Alexis' tube with the other!
We ended up spending a lot of time at this mushroom pool that was shallow with lots of spraying water and he waded and swam in their for a long time. Even Isabella had a great time. COLD MOMMY COLD MOMMY. Alexis was exhausted by the end of the day and so was I. Luke ended the day with some Sesame Street smashed pennies (he has a collection of those he started in Boston) and was so excited about that.
Today I had to work and Luke enjoyed entertainment of another variety, Michele. It was a nice diversion for them (Luke always asks who are we going to see today -- evidently Moms can get boring) and I got some Mom time at work.
Thanks for all the words of wisdom from all the great moms out there.
We are really looking forward to Maine next week and Camp Sunshine and are already picking out our masquarade costume. Which reminds me, I need to go buy more accessories tomorrow.
So best be off to bed.
Love to all
Nicole PS: Special prayers for Michael who will be heading to his brain surgery on July 9!! Mom Jan needs extra love right now!
Saturday, June 19, 2004 8:53 PM CDT
Well, I probably am not in the right frame of mind to write tonight, but it is quite and I am long overdue -- over 1 whole week since I last wrote is a new record!
Anyway, I am having one of those days where I feel not so good as a mother. I mean, I feel as though every day should be how I imagined: full of fun and coloring, finger painting and smiles, laughter so your belly hurts, making sandwiches in funny shapes. Instead, I feel that all I do is yell at children who do not care one bit what I say or have enough respect to even pretend to be listening.
They are not defiantly bad but they do not have the simple courtesies that I am trying to instill in them such as respect for themselves, respect for others, neatness and kindness. Luke cries at everything or yells and raises his fists in frustration. Alexis tries to follow him around and play, but ends up crying because he took a toy from her. Isabella just wants to fit in and sometimes they will let her and other times they do not. Then, forget asking them to pick up or be polite.
Tonight we went to dinner with my in-laws. Luke started by repeating 50x times what he wanted for dinner as if my ears were not working (and he is not a quiet talker). Then, after we order he begins moaning about how hungry he is where is his food etc. Then we have the eating part and the spilled milk and the fighting over a hotdog roll.
In the end, I am fatigued just going through the motions. I know it sounds like a normal day in the life of a mother of 3, but sometimes I wonder how normal it really is. WHere are the days you grow up dreaming about where everyone smiles and laughs and eats their vegetables????
One of my favorite memories of my childhood is when my mom would gather my sister and I in the car and head for the park. Before we got to the park, we would stop at KFC for a big bucket of chicken. Then we would set out our blanket and eat chicken till our hearts content, laughing, watching the animals, smelling the air. Simple. Today I try to engage my kids in fun things and toys and games and too many food choices and I end up with 3 unhappy kids and hating myself. How do we return to the simpler things in life? Why in an effort to do more for our kids are we maybe doing less?
I grew up during a time when spanking was the norm. I do not believe in it, although a good threat of spanking sometimes is necessary, but I know it worked for me as a child. I had a fear of my parents getting mad and a fear of getting hit. Although not a perfect child, I did consciously try to avoid the things that would get the belt on my butt. I try to reason with my kids and give them choices and options and control of their lives and some days I feel like spanking myself for my stupidity. How can children who are so very very smart lack the common sense?
Tonight I asked LUke about the activities of the day and as always when he is feeling bad about his actions, he said he did not want to talk about it. I told him I know it is not easy to listen and it takes hard work. He said he has been trying since he is 4 and he cannot do it. I said you cannot give up. Every day we start anew. Even as a mom, some days we do not say or do what we want to and the next day we try again to be better. I told him it is not easy to be a mom, to be in charge of little people who do not want to be charged, who do not think they need a mother or someone to tell them what do to, that it is hard to cook 3 different breakfasts and different lunches and listen to crying over dinner because the food is YUK. He understood.
It is times like these that I love being a mom, but feel guilty for the day before me and the unanswered questions of why the day did not turn out how I planned. Now, we did have some highlights too: I took all 3 kids on a bike ride today with the bike seat and bike buggy; we had a girls' hour where we visited Aunt Pam's dogs and stopped at Dunkin Donuts for coffee and donuts, we cleaned up the playroom together (well more me cleaning them playing), and we had fun at the in-laws after the crazy dinner playing with toys and visiting the bunny rabbit behind their house.
A friend of mine today said she met a woman recently divorced who now has every other weekend free while her ex-husband takes care of the kids. Oh, how she treasures that free time and finds amusement in watching her ex learn the hard way how tough kids can be. But, after a full week of kids plus a day and 1/2 off while I attended a retreat overnight, I think no matter what I prefer to have my kids glued to my hip and crazing in my ears. For despite the quiet that bestills you when you are by yourself, or the multitude of things you can actually get done, at the end of the day it is just you. For me, I prefer the end of the day to be full of the most amazing little things God ever made: Luke, Alexis & Isabella. For really what is the day really worth without someone you share it with, do it for and make you appreciate it all at the same time.
So, to all you women and men who have been where I am tonight and who will probably be there again as I will, here is to the memories both good and bad and the ever living fantasy that tomorrow we will laugh and sing and paint and create without any yelling and fighting and hitting and craziness. Yeh, right!!
Love Ya Nicole
Saturday, June 19, 2004 8:53 PM CDT
Well, I probably am not in the right frame of mind to write tonight, but it is quite and I am long overdue -- over 1 whole week since I last wrote is a new record!
Anyway, I am having one of those days where I feel not so good as a mother. I mean, I feel as though every day should be how I imagined: full of fun and coloring, finger painting and smiles, laughter so your belly hurts, making sandwiches in funny shapes. Instead, I feel that all I do is yell at children who do not care one bit what I say or have enough respect to even pretend to be listening.
They are not defiantly bad but they do not have the simple courtesies that I am trying to instill in them such as respect for themselves, respect for others, neatness and kindness. Luke cries at everything or yells and raises his fists in frustration. Alexis tries to follow him around and play, but ends up crying because he took a toy from her. Isabella just wants to fit in and sometimes they will let her and other times they do not. Then, forget asking them to pick up or be polite.
Tonight we went to dinner with my in-laws. Luke started by repeating 50x times what he wanted for dinner as if my ears were not working (and he is not a quiet talker). Then, after we order he begins moaning about how hungry he is where is his food etc. Then we have the eating part and the spilled milk and the fighting over a hotdog roll.
In the end, I am fatigued just going through the motions. I know it sounds like a normal day in the life of a mother of 3, but sometimes I wonder how normal it really is. WHere are the days you grow up dreaming about where everyone smiles and laughs and eats their vegetables????
One of my favorite memories of my childhood is when my mom would gather my sister and I in the car and head for the park. Before we got to the park, we would stop at KFC for a big bucket of chicken. Then we would set out our blanket and eat chicken till our hearts content, laughing, watching the animals, smelling the air. Simple. Today I try to engage my kids in fun things and toys and games and too many food choices and I end up with 3 unhappy kids and hating myself. How do we return to the simpler things in life? Why in an effort to do more for our kids are we maybe doing less?
I grew up during a time when spanking was the norm. I do not believe in it, although a good threat of spanking sometimes is necessary, but I know it worked for me as a child. I had a fear of my parents getting mad and a fear of getting hit. Although not a perfect child, I did consciously try to avoid the things that would get the belt on my butt. I try to reason with my kids and give them choices and options and control of their lives and some days I feel like spanking myself for my stupidity. How can children who are so very very smart lack the common sense?
Tonight I asked LUke about the activities of the day and as always when he is feeling bad about his actions, he said he did not want to talk about it. I told him I know it is not easy to listen and it takes hard work. He said he has been trying since he is 4 and he cannot do it. I said you cannot give up. Every day we start anew. Even as a mom, some days we do not say or do what we want to and the next day we try again to be better. I told him it is not easy to be a mom, to be in charge of little people who do not want to be charged, who do not think they need a mother or someone to tell them what do to, that it is hard to cook 3 different breakfasts and different lunches and listen to crying over dinner because the food is YUK. He understood.
It is times like these that I love being a mom, but feel guilty for the day before me and the unanswered questions of why the day did not turn out how I planned. Now, we did have some highlights too: I took all 3 kids on a bike ride today with the bike seat and bike buggy; we had a girls' hour where we visited Aunt Pam's dogs and stopped at Dunkin Donuts for coffee and donuts, we cleaned up the playroom together (well more me cleaning them playing), and we had fun at the in-laws after the crazy dinner playing with toys and visiting the bunny rabbit behind their house.
A friend of mine today said she met a woman recently divorced who now has every other weekend free while her ex-husband takes care of the kids. Oh, how she treasures that free time and finds amusement in watching her ex learn the hard way how tough kids can be. But, after a full week of kids plus a day and 1/2 off while I attended a retreat overnight, I think no matter what I prefer to have my kids glued to my hip and crazing in my ears. For despite the quiet that bestills you when you are by yourself, or the multitude of things you can actually get done, at the end of the day it is just you. For me, I prefer the end of the day to be full of the most amazing little things God ever made: Luke, Alexis & Isabella. For really what is the day really worth without someone you share it with, do it for and make you appreciate it all at the same time.
So, to all you women and men who have been where I am tonight and who will probably be there again as I will, here is to the memories both good and bad and the ever living fantasy that tomorrow we will laugh and sing and paint and create without any yelling and fighting and hitting and craziness. Yeh, right!!
Love Ya Nicole
Saturday, June 12, 2004 9:46 PM CDT
Ahh, despite my few areas of sunburn (you know how this upsets me. Call me Anti-Suntan) and my total exhaustion it is quiet in my house and I am happy to share a few thoughts with you all.
Luke's visit on Friday to Philly was good. Although all his results are not in yet, all of his labs so far show that everything is working very well. His glucose was a little low and his thyroid levels were the low normal level, but nothing to get concerned about yet and we will just continue to monitor them. We did not receive his growth hormone factors back yet.
His neuro-psych evaluation did not surpise me much. It showed that Luke is extremely gifted and although that is a wonderful blessing as a parent, it is more important to us because it means that if Luke does have cognitive deficits from the radiation, he has a lot of wiggle room so to speak. I pray each day that he will be able to fulfill his God given intelligence in some meaningful way.
Luke and Alexis celebrated their graduations today with a party at the house, complete with ceremony, cap and gowns, diplomas and awards. Luke received a Bravery Award but did not understand why Aunt Suey was "blubbering" as she read the award. Little does he realize how amazing his journey has been and how special these accomplishments really are, and the bravery through endless hospital visits, doctors visits, pokes, prodes, cuts, stitches, medicine, etc. We are so proud.
Alexis received an award also for her ability to take a second seat to Luke and his needs, especially when she gets dragged to his appointments or doesn't get time with Mommy because Mommy is helping Luke. She is an amazing little girl and I hope one day she realizes how much she has helped make everything we do possible by being so helpful and easy going and not making waves when it is so obvious that she is stuck in middle child land and she deserves so much more.
Daddy received an award for being Mr. Mom so he can appreciate all the new found skills he acquired in my absence and I received an Energizer Bunny award. It was quite an honor and beautiful.
Officer Stephens of the Whitehall Police Department made a special stop at the house (scaring some of the more unsuspecting attendees) and had full police gear for Luke, allowed him to handcuff the person of his choice (Aunt Pam), place her in the patrol car and drive her away. Mind you a very short distance, but an amazing time for Luke.
I learned a couple things too with the police visit. First of all, no matter how old you are you still feel guilty for drinking when a policeman is near and second, the back seats of the police car are hard molded plastic so they can be washed and sanitized. Makes sense. I am contacting Chrysler to see if I can get fitted for those in my mini-van. Sure would make cleaning up spilled milk or vomit much easier!
This journal would not be complete with out addressing some of the minor details of today, that being the breakdowns of the guests of honor. Alexis had a breakdown, but hunger and especially TIREDNESS will trigger that in the best of us. Luke's meltdowns were mostly because in his super intelligent world, he sometimes misses the things that are right before his eyes. Like the amazing aunts he has who worked tirelessly and very diligently to make sure all his dreams for today would come true. Who understand that his life is full of craziness and sometimes unknown to him he tries to hard to control parts of his life at the expense of other people, be it his friends or his aunts. Who love him no matter what, but also try to show him the error of his ways.
Tomorrow -- another day, I am sure we will reflect on the events of today be thankful once again that he has an Aunt Suey and an Aunt Pam and Alexis & Isabella too, and all his friends and family who love him so dearly and tolerate him anyway!
Love to all. PS: Please keep in mind our dear sweet Elizabeth who is participating in the Whitehall Relay for Life at the end of June in honor of Luke. If you are interested in making a donation to this cause, you can do so via Elizabeth: msyslo@enter.net where you can get her address etc.
Also, for those of you who are interested, the Pediatric Cancer Foundation (formerly the Pediatric Oncology Support Group of the Lehigh Valley) is incorporating and applying for non-profit 501c3 status and will be forming a Board of Directors to help bring some positive initiatives in the area of Pediatric Cancer to the Lehigh Valley. If you are interested in serving on the Board, please let me know or invite your friends (www.cancersupportgroup.org).
Nicole
Friday, June 11, 2004 6:07 AM CDT
As I mentioned in my previous email, we were fortunate again to attend the Children's Brain Tumor Foundation's Dream & Promise Benefit on Monday, and aside from meeting Meredith Vieria (shown in picture above), we also were able to meet new families as well as reconnect with those we met last year.
The weather had been nice in the earlier part of the week so we did the sprinkler and kiddie pool in the back yard the kids had a great time. With the rain the last day or so, we have been a little more caged in.
Luke has been doing well. He complained briefly of stomach pain yesterday and he has some crazy rash on his face. I am not sure if it is that his skin is very dry or if it is something else. But we have been watching it and it is not getting worse. He has the most sensitive skin!
The bald areas on his head have become more pronounced each day and especially when he is wet or sweated. Luke cannot see them because they are on the top and back of his head. Besides, he has never really had a hangup with that I do not think and is accustomed to seeing kids with no hair. I tell him it is neat because he will not get as hot!!
The rivalry between Luke & Lexi continues but they can also be so helpful to each other. They also can be so a like: neither one likes to clean up their mess, neither likes to go to bed, both love to whine and complain. HAHAHA Actually, they have been pretty good lately, as we are all still adjusting.
Well, we are off to Philly today for some appointments. Hope you all have a very nice day. We will post more pictures later. And to our friends in Boston, the book in under construction and the pictures should be coming shortly.
Nicole
Wednesday, June 9, 2004 4:23 PM CDT
Yes, that is Luke with Meredith Vieria (of The View). She was the Mistress of Ceremonies at the Children's Brain Tumor Foundation Dream & Promise Benefit on Monday.
Luke is feeling great and looking great, especially in his black suit!!
We are having a nice week enjoying the warm weather and will write more later. For now, get outside and suck up that sunshine! BUT WEAR SUNSCREEN!
Nicole
Sunday, June 6, 2004 11:09 PM CDT
Wow, what a busy week. Our fundraising/information stand Hokey Carnival met some unexpected weather problems, as did our fundraiser garage sale for the Pediatric Cancer Foundation but all in all we did well. Now I have to clean up! But, Luke & Lexi loved the carnival rides and even Isabella was excited to try some out. They ate hotdogs and had a splendid good time!
Luke had a really nice time at Relay for Life on Friday and participated in the Survivor's Walk. I pushed him around the track in his stroller (he said his legs hurt and he was tired) and at the end all the survivors stated their name and the number of years of survivorship. At first Luke was hesitant to do this part and wanted me to do it. But, I told him that since he fought the fight and did all the hard work over the last 2 years through 3 chemotherapy protocols, surgeries, revisions, MRIs, bloodwork and most recently 29 proton treatments, he deserved to get all the recognition. So, he proudly stated: LUKE RONCO, 2 years. I burst into tears. It was such an amazing moment to really think and see my son acknowledge his fight. His nurse Karen presented him with a charm for his bracelet that stated 'cancer survivor'. Saturday he told me that was now his favorite charm. We put it on his bracelet right between the gold ribbon and superman. How fitting!
Although we could not stay for the luminary lighting, Luke certainly had a good time as did the girls running around and enjoying the nice weather and good friends. Thanks nurse Karen too for spending time with Luke & Lexi playing all those duck games! You are the BEST!
Saturday was another marathon day filled with rain. Luke was the GRAND MARSHALL for the Hokendaqua Firemen's Parade and was so proud. ALthough a little disappointed he could not throw tootsie rolls into the crowd or sit in the convertible with the top down, he smiled and waved like a pro. The parade aired on RCN TV on Sunday and although he did not get much coverage, I couldn't be prouder.
Tonight he went to the Whitehall Girls Soccer Banquet as their honorary guest. Those amazing girls held some fundraisers for Luke, including a bake sale, and have been so generous with their time and autographed soccer ball and shirts. We love them and applaud their sense of compassion at an age when it easy to get caught up in your own life. He had an equally enjoyable time there as well and thanks again to Pam Fink and the entire girls soccer team. We love you!!
Tomorrow night we are again getting gussied up to attend the Children's Brain Tumor Foundation's 2nd annual benefit in New York. Last year Luke participated in their video which was a tear jerking reminder of the strength of our children but also the unfortunate strength that cancer has as well. God Bless Bella! We hope to see some familiar faces tomorrow night and of course Aunt Tracy!
All in all it certainly has not been a restful week home but that seems to work best for us. I am a self-admittedly a neurotic person who seems to function better when I am pulled in a zillion directions. Luke unfortunately has inherited this trait as well. But, of course he appreciates down time as long as it is full of lots of people dotting on him. HAHAHA
I have attached some new pictures for your enjoyment. Currently, we are observing Luke's hair continue to thin and fall out in some key circular places on his head but otherwise he is feeling great, looking great, energetic and a happy little man. I thank God every day for each day with him and we are so happy to be home enjoying him without too many restrictions.
Please keep baby Ryan in your prayers as he recovers from his most recent heart surgery (www.caringbridge.org/pa/ryancarl) and our friends we met in Boston: Arual, Michael (www.caringbridge.org/ma/michaellanosa), and Austin. Our children are strong and brave but they still need all those prayers and wishes of love. Also keep our friend Jamie in your prayers as she recently lost her mother suddenly to cancer.
Nighty Night! Nicole
Thursday, June 3, 2004 10:13 PM CDT
Well, a few more days have passed and I am looking forward to the weekend to relax -- hopefully. We have been working hard setting up a stand at the Hokey carnival to help promote the Pediatric Cancer Foundation of the Lehigh Valley as well as pediatric cancer awareness in general. Thanks to everyone, especially my husband, who is helping out.
Luke is doing really well. He is full of energy although he tried to nap this afternoon and had too many distractions so he crashed early tonight. But overall he is feeling really good, eating a decent amount, and acting like a normal 5 year old. Of course he is still fighting with his sisters, but at some points he is really understanding that he needs to think before acting and that words are only words, but we still need to choose them carefully.
I am excited about his progress in reading. He has worked really hard on the "at" "an" and "ig" words and can really sound a lot of them out perfectly. It is exciting to see him learn a concept and then run with it. I only wish I could find that learning curve with cleaning up. Making a mess they are pros -- cleaning up forget it!
The weather has broken and we are looking forward to a beautiful weekend. Tomorrow night is Relay for Life and we are going to celebrate during the survivors walk and the luminary lighting. It is such an amazing event to be a part of and we are happy again to share in it.
I made a really good contact the other day with a group that offers art therapy and I am meeting with them next week. Sounds interesting and a potential nice fit for Luke and his pent up energy, as well as the other children and families we know. At any rate, I am anxious to get him back to his violin lessons and all of us back into a routine. But, fear not-- we have a full plate of activities planned this summer!!
Love to all until later Nicole
Tuesday, June 1, 2004 9:37 PM CDT
We are home and as you can guess from my lack of writing, very busy. I have been so full of crazy energy I couldn't sleep for the first few nights. But, lucky for me my kids are wild enough to tucker you out that you are begging to sleep sooner rather than later.
Luke is doing well. He has some adjustments to work through and certainly topping the list is his anger management. He seems quite keen on having the world revolve around him and being in control of his environment.
While this is understandable given what he has been through, there is a limit to the free rein he can have before it interferes with normal family functioning. Today was a perfect example. The entire day he spent fighting with Alexis and she, to her own credit (or demise depending on how you look at it), held her ground and fought right back. For me, it was driving me nuts. He hit me so I hit him. I had this toy first. This is MINE. You all know the routine, but today it was really brewing.
So, Luke spent a lot of time crying after being sent to his room or ordered to return the toy he pulled out of her hand. Luckily, he calmed down this evening and was rather good. We will see what tomorrow holds.
His surgery on Friday went great and we drove home a couple hours later. Of course I had to pack the car in the rain and drive in the rain but hey, all in a days work. We made it home Friday night about 7:40 pm and so has begun the long tedious job of unpacking and returning my house to some semblance of order.
That combined with the umteen million other things on my calendar for this week leaves me trying to remember my own name. But, what is in a name anyway.
Luke is excited about his impending graduation celebration which we hope to hold Saturday a week. It actually will be Alexis' celebration as well since she also did a great job completing 2 day preschool and is advancing to 4-day Pre-K. As you might guess, Luke is not so happy about sharing the spotlight but lucky for him Alexis is not in need of as much light!!
As for the outcome of Protons -- well, we do not know much. Of course we think it is doing something, although all you can see from the outside is the bald spot on LUke's head. However, we may not know much for quite a while. There is a great possibility the tumor will get bigger first as it reacts to the radiation with much swelling and increase. However, over 6-9 months, and definately by 12 months we should see it start to decrease.
As I mentioned before Luke continues his prayers every night that God will take his tumor away and he will not be sick anymore. He told me tonight that his tumor keeps him from having a lot of dreams so he wants it to go away. His is an amazing little man.
We are working also to get him back into some schedule with his violin lessons as well as his reading lessons. Ms. Kathy's assignments have worked amazingly well and tonight as he completed all his assignments to date, he was reading sentences with "at" and "an" words. Sometimes by the time he finishes the sentence he forgets what the first part of it said, but that is ok. He is doing GREAT. But, best of all it keeps him mentally and physically active which is exactly what Luke functions best with.
This week is the Hokey AA Carnival (http://www.hokeyaa.com/carnival.html) and Luke will be riding in the firetrucks on Saturday during the parade. It should be fun. Mom is going to try to man a table for the support group a few nights this week as well as the dunk tank to raise money for the support group (www.cancersupportgroup.org). We also have Relay for Life on Friday night and before you know it, June will be almost over as well. Time sure if going fast.
So, as I finish up a few more things before bed, I hope you all enjoy the sunshine as well and continue your prayers -- for after all, we all need some good dreams now and again!!
Love to all Nicole
Friday, May 28, 2004 10:02 AM CDT
WE ARE DONE!!
Treatments ended yesterday - 29 in total. And today we had port surgery and now we are home ready to pack up the car and head for Pennsylvania. Despite the rain outside and the cold temperatures, we are so excited to go home.
Luke got a new Rescue Heroes game he is so excited to play but hopefully, we can enjoy the weekend of rest and relaxation all around.
Thanks to everyone who has helped us throughout this journey whether it was with word or deed. It is because of you we have a few extra boxes to carry home and a few more laughs to tuck into our memories.
Love to all until we see you soon.
Nicole The Chosen Mothers > By Erma Bombeck > Most women become a mother my accident, some by choice and a few by habit. > Did you ever wonder how mothers of children with life threatening > illnessess are chosen? > > Somehow, I visualize God hovering over earth selecting His instruments for > progagation with great care and deliberation. As He observes, He instructs > His angels to make notes in a gaint ledger......... > > "Armstrong, Beth, son, patron saint Matthew" "Forrest, Marjorie, daughter, > patron saint Cecilia" "Rutledge, Carrie, twins, patron saint Gerard." > > Finally, He passes a name to an angel and says "Give her a child with > cancer." The angel is curious. "Why this one God? She's so happy." > > "Exactly," smiles God, "Could I give a child with cancer a mother who does > not know laughter? That would be cruel." > > "But, does she have patience?" asks the angel. > > "I don't want her to have too much patience or she will drown in a sea of > self-pity and despair. Once the shock and resentment wear off, she will > handle it." > > "I watched her today," said God. "She has that feeling of > self-independence that is so rare and necessary in a mother. You see, the > child I'm going to give her has it's own world. She has to make it live in > her world and that's not going to be easy." > > "But Lord, I don't think she believes in you," said the angel. "No matter, > I can fix that. This one is perfect. She has just enough selfishness." > > The angel gasps, "Selfishness! Is that a virtue?" > > God nods. "If she can't separate herself from the child occasionally, > she'll never survive. Yes here is the woman I will bless with a child less > than perfect. She doesn't realize it yet, but she is to be envied. She > will never take anything her child does for granted. She will never > condsider a single step ordinary. I will permit her to see clearly the > things I see...ignorance, cruelty, prejudice...and allow her to rise above > them." > > "And what about her patron saint?" askes the angel, his pen poised in mid > air. > > God smiles and says..."A mirror will suffice."
Wednesday, May 26, 2004 10:52 AM CDT
Thanks for all your outpouring of support but truly we are fine. Luke has these occasional meltdowns or name calling sessions directed to me but I know deep down it is exactly for those reasons you said -- he loves me and trusts me.
He has gone through a lot and I only hope that we have a reprieve in our future of normalcy. WE are left with only one more treatment and then surgery before we leave Boston with fond memories and some new friends.
I wish this weather would break it certainly is enough to depress even the happiest of lots. Temps are not above 50 degrees and the rain is looming again. I have packed and continue to pack but it should be interesting if I can get everything to fit into the car. Funny how you can accumulate so many things in only 7 weeks.
This trip has taught me a lot of things and it has given me even more ideas for what things work and what things do not work in terms of taking care of sick children. As I have mentioned in the past, the team approach of the doctors is the BEST and should be used everywhere. I am going to discuss with Luke's doctors back home at CHOP but I am sure it would be easier to move an Egyptian Pyramid.
Also, the little things that mean so much to the kids are evident everywhere from the clown visits, to the decorative rooms and sea scenes that cover the entire pediatric floor. Luke looks forward to picking out a toy at the end of the week from the "prize box" and borrowing a video from their collection. We have read every book there and some 2 or 3 times.
His nurse Ena made a point of bringing Luke special treats every Tuesday and Thursday: sausage biscuit from McDonald's (Luke's favorite) with grape jelly. Oh how he loves that. Plus, she can make a mean blueberry pie and the donuts are great too. Today despite some water issues at protons, we enjoyed bagels and coffee. Little things go along way!
To everyone who lifted our spirits time and time again with cards, and emails and phone calls -- I can never thank you all. For the food deliveries and the snack packs that were sent home with John, the mail sent to Alexis to help her feel connected and important, all the carepackages of toys for Luke and wine for me. I can never list all the ways and manners that we have been blessed during this trip. We thank you all from the bottom of our hearts for helping us when we needed it and being there for us. We love you all and know that you will continue to support us along the path as we continue our journey with Luke and our family.
So, as I go reheat my Chinese before Brain Tumor clinic, I want to leave you with some words inspiration and thankfulness for all you have done for us. BELIEVE IN MIRACLES.
Nicole
I wish you a day of ordinary miracles---- > > A fresh pot of coffee > you didn't make yourself. > > An unexpected phone call > from an old friend. > > Green stoplights on your > way to work or shop. > > I wish you a day of > little things to rejoice in... > > The fastest line at the grocery store. > > A good sing along song on the radio. > > Your keys right where you look. > > I wish you a day of > happiness and perfection-- > > I wish you little bite-size pieces of perfection that give you the funny feeling that the Lord is smiling on you, holding you so gently because you are someone special and rare. > > I wish You a day of Peace, > Happiness and Joy. > Remember to Make the Time TODAY, > To do something Special > for a Total Stranger. > Have a TERRIFIC day >
Tuesday, May 25, 2004 9:53 AM CDT
Today was bad. Luke had a breakdown that brought every tech at Protons running. Is that Luke crying????
What was the breakdown over? You could say it was that he couldn't find the right place to do his homework paper or that I asked him not to be so loud or that I dared to eat a cracker when he cannot eat (I was just trying to prevent myself from getting faint). But truthfully, I think Luke has just had enough. I think this stay is getting the best of him.
Last night he confessed to me that he is worried. He is worried that his tumor will keep growing. What if it does I asked him. I don't know Mommy but it isn't good he said. This is a lot for a 5 year old to deal with compounded by missing his family. So today, he hates me and wants Daddy. Today I am a hateful person and today he wishes I didn't live with him and I would just leave.
With perfect timing I came home from this mornings name calling to a perfect email from a very good friend. It is about mother's of children with disabilities. Mothers of children with disabilities worthy of praise ***************** By Lori Borgman Knight Ridder/Tribune News Service
Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want it to have ten fingers and ten toes.
Mothers lie.
Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.
She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57,column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but a mother wants what a mother wants. Some mothers get babies with something more.
Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. The doctor's words took your breath away. It was just like the time at recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind right out of you.
Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled her for a well check, and crashed head first into a brick wall as you bore the brunt of devastating news. It didn't seem possible. That didn't run in your family. Could this really be happening in your lifetime?
I watch the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing, it's a wondrous thing. They appear as specimens without flaw -- muscles, strength and coordination all working in perfect harmony. Then an athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.
There's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery. Mothers of children with disabilities live the limitations with them.
Frankly, I don't know how you do it. Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.
I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy columns like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I've got what it takes."
You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack.
You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.
You are the mother, advocate and protector of a child with a disability. You're a neighbour, a friend, a woman I pass at church and my sister-in-law. You're a wonder.
*************** Truth is we HAVE to be stubborn and hard skinned and we cannot help but be driven by our amazing children and the way they bring a tear to our eyes with their belly laughs or their crazy fits of frustration. A Mother's job is thankless in many ways. They do not appreciate that the best mother's are the ones who are the "meanest" in many ways. Not physically mean but who teach them to be the best they can be, to be survivors and well rounded and fighters and lovers. Who teach their boys to cook and their girls to hammer and who love those little people more than life. It is the best job you will hate some times and the only job you would never trade.
So as we embark on our last 2 days of treatment and then hopefully an uneventful surgery before we leave Fair Boston, I am going to remind myself of my own words of wisdom and I am going to order myself up a nice big platter of Chinese as I keep striving to be the meanest mother in the world because that my friends, is the greatest love of all.
Nicole
Monday, May 24, 2004 6:51 AM CDT
Thanks first off to Ms. Kathy for your homework and your continued dedication to helping Luke this summer. Thank you too to Ms. Maggie for your offer to help. We may be in contact as well!!
Luke had a great weekend as did I. Despite, once again, our normal airline difficulties, we were happy to be home. We didn't do much-- as our goal was just to enjoy being there and seeing each other. Saturday's picnic was nice for Luke & Alexis and then they were doubly blessed because their grandparents came for an afternoon cookout topped off with a visit to see Shrek 2, with a Rita's ending.
Sunday's always go very fast but we enjoy breakfast with grandparents #2 and that was wonderful. The kids then played in the sprinkler and baby pool and finally fell asleep. Thanks Aunt Sue for watching them while Luke and I went to the airport.
This week should be it. Today it is rainy and cold -- 59 degrees. Far cry from the scalding weather back home. I miss that too.
To set the record straight - I will confess that yes, I save all Luke's, ALexis' & Bella's papers. It is part of them and I just cannot part with them. I also save other stuff -- their first outfit, their first shoes, their belly button when it falls off. Yes I am weird, but I love my kids. As for myself, I have saved some stuff as well. I have a few papers from my own kindergarten days as well as my USS Constitition which is tucked away in the attic.
Yes, as a 15 year old I slaved for month's over it winning local competition for History Day and heading to State's. It was a very pre-computer area and a lot of the computer work done on it was very high tech at the time. Seems silly now. But, to me it is a true testament not just to me but to an amazing teacher, Will Pike. Who if any of you have been blessed to have him as a teacher know how amazing he is. Yes, he teaches health not boats but he is a nautical expert and although I was no longer in his class or his grade, he always was my friend and my mentor.
Enough of that now, I will make no excuses for it. Sometimes I think we do not save enough (this does not mean you Mom!!). Memories are like gold to me and I will carve them out as often and as many times as I can.
Love to all until we see you. Next weekend we hope to be home by Sunday so you are all welcome to call and come by. Luke would LOVE it.
PS: Sylvia - Please thank Sara for us as her goodie package had your address. Also, thank the "boyfriend" too for his lovely college autographed posters. What a superstar!
Nicole
Friday, May 21, 2004 7:07 AM CDT
We are very excited again today to be returning home for our last weekend visit home. Now that we are so near the end, the excited mounts so much more.
Luke has been doing really well. We have a busy week next week and we are still hoping to be done by next Friday, but given the holiday weekend -- anything is possible.
Life around Boston is still crazy. The BIG DIG has everything a mess and now with the Democratic Convention coming, there is even more mess. I will be happy to leave.
Yesterday Luke and I ventured out to the USS Constitition. It was an amazing trip for me because as a child of 14/15, I built a replica of the USS Constitution for a History Day competition. Although I never saw the ship before, I was pretty impressed at the job my 14 year old self had done so many years ago. We learned interesting things too about it which I bet at one point I actually knew too.
Earlier in the week, we celebrated with Arual as he finished his last treatment Monday and yesterday left for home in Puerto Rico. We are sure to stay in touch with him as a very nice friendship has been formed. Our surrogate family has also returned from their trip and we are happy to be celebrating Alexia's 3rd birthday with them next week. We will miss them so much when we leave but we know we are never too far.
I am really looking forward to getting home and enjoying this summer. We have really not had a summer that wasn't full of chemo and blood work and MRIs and testing in a long time and although the MRI's will remain evey 12 weeks and the specialist visits especially with his impending pituitary issues, no chemo and constant weekly appointments will be a dream come true which I am really looking forward to.
Sesame Place, Knoebels, Wildwater Kingdom are all on our list of must sees and we know the kids will really enjoy it. Luke is so excited for swim lessons to begin. When is that anyway?
Thanks again to all our friends and family for their support. It has been a rough 6 weeks, but we will emerge from it and hopefully, Luke will only get better and better.
Love to all Nicole
Sunday, May 16, 2004 8:56 PM CDT
We are back and settled in Boston having had a perfect flight (finally). Yes, our flight Friday was late ... very late but today we were right on time; a perfect air travel.
Luke is sad to be back because he so misses home, his friends, his bed, his toys and his yard. But, he knows he has accomplished a lot and that he is almost finished. Despite getting home after 12 midnight Friday, we had a perfect weekend, albeit too short.
Saturday we ran some errands in the morning, visited with Luke's friend Elizabeth and then spent time outside planting flowers, yard work and playing on the swings. Luke had a flurry of visits by his devoted family with both sets of grandparents coming and a few aunts in the mix. He celebrated his day by attending the Carnival in Fullerton and riding lots of rides. Despite the rain he had a smashing good time with a proper ending back at the house full of play, ice cream, chocolate muffins and other sundry sugar offerings.
He was tuckered out after everyone left and slept really well and late ... till 5:29 a.m. Sunday morning. Amazingly, I myself felt awake and ready to complete more items on my "to-do" list so it worked out.
I have to admit I started to lose my patience toward the last hour or so before we left: too much to do, too little time, raw emotions for leaving my girls again so soon. I am sorry to Alexis & Bella if I was a little hard on them this afternoon -- I love them so much.
It is amazing how much they change in just 2 week intervals. Alexis has become such a beautiful big girl. she is so able to care for herself and very helpful to her Daddy. Isabella has gotten much taller and her hair is getting much lighter with beautiful blonde highlights creeping in.
Luke is still quite spoiled, but I am so proud of him and so in love with the smart little man he is.
We are excited to return home next weekend and hopefully in 2 1/2 weeks for good.
Tomorrow Arual has his last treatment. Arual has become Luke's friend in a very short time at Protons and for us it has been very interesting because he suffers from the same type of tumor, same location, similar problems and no previous success with chemotherapy. On Thursday he will return to his home in Puerto Rico. I found it amazing that while Arual speaks almost no English and Luke only know the numbers from 1-10 in Spanish, it never was an issue or a barrier to their friendship. A true lesson for us adults!!
So as we pass yet another year, another milestone in Luke's journey there is lots to celebrate. Luke continues to fight, he is feeling good, he is a live and healthy and active and enjoying life as best he can. He runs and plays and laughs and gets in trouble. He loves PEZ and loves to tell jokes. He hates vegetables and loves pasta. He graduated Preschool and he hopefully, but not too soon, will one day celebrate his highschool and college graduations.
Thank you all again our friends and family for your love and prayers. It is more meaningful to us than you ever know. Also, a special thank you to all the girls at Cherrydale who send those carepackages home every Friday with John. The girls love the juiceboxes and Dora snacks and all the other goodies, and we truly appreciate the little ways that you save us time and extra effort. And to all our faithful letter writers -- thank you too so very much. Luke & Lexi LOVE them!
Love to all until later Nicole
Friday, May 14, 2004 10:37 AM CDT
20 treatments down and only 9 left to go. WE are excited.
Tonight we fly home again for the weekend and we are looking forward to relaxing in our own house and yard and I am looking forward to finally planting my flowers!!
One big note for today for all of those back home who may want to stop by and see Luke etc.
DO NOT COME OVER IF YOU ARE OR HAVE BEEN SICK RECENTLY. We love you all but at this stage cannot afford Luke getting the littlest bit sick or cold or congested. Too costly when he is sedated every day.
I also understand that there is a strep throat epidemic around as well in the Lehigh Valley so please use common sense when it comes to Luke. After he is all well, you can spit your germs on him if you wish, but for now -- please use your best judgment!
Luke is excited to come home and is planning a sleepover at his Pappy's tonight and a carnival night tomorrow. He also is excited to visit with Elizabeth as well.
Me, I just hope my plants has survived the heat wave and I can get them planted. Plus, I just want to lay in my own bed, in my own room, in my own house and inhale deeply.
Love to all
See you later alligators! Nicole
Wednesday, May 12, 2004 6:13 PM CDT
Luke is doing really really well. Only 12 more treatments left and we are getting excited to return home for good.
Luke has been full of energy and really feeling good lately. The warm weather certainly helps and today we spent time walking around at the Market and checking out all the stores. Of course, we went to Zoinks and Luke got yet another something.
I am going to have to get another van to bring all our goodies home. HAHAHA
The balloons from Luke's class are still up which is always so fascinating to me. The scary part will be that I will hand wrap each one up for Luke's treasure box and keep them with all the other balloons he has accumulated since he was diagnosed. I am sentimental, but some would say I take it to an extreme!
I really hope to get Luke engaged in activities back home and I hope Ms. Kathy can spend some time with him one-on-one over the summer to help increase his pre-reading skills. He thrives to read but I have no idea how to teach. I also hope to find other mind consuming activities for him too since he seems bored otherwise. On a plus, I have become quite the showman playing Dog Dinosaur and Rescue Heroes but I am sure Luke would appreciate some diversity. Moms can be BORING.
Luke's appetite is still not up to normal, but you would never guess. His weight was 60lbs. today and he is off the charts in weight. Height he is about 110 cm and in the 25% for height. These will be important as his hormone functions are coming under fire with the radiation and hormone replacements, including growth hormones will probably be a necessity. Luke informed me again today that his underwear elastic are again bothering him and it is time for new underwear. Size 10 hear we come. YIKES. Also, Luke's shorts have gotten a little tight so I am choosing elastic ones over those snappy kind. He is so cute!
Otherwise, we are of course excited to come home again this weekend. We are celebrating life and all of Luke's accomplishments. I smile when I think that despite the radiation and the inevitable effects they expect this to have on his intelligence, he still is winning people over with his articulate speech and his humorous conversationalism. He constantly interrupting me as I read him a story to point out similarities as well as areas that he can relate to his own life and world. Quite amazing.
We met a freshman today from Yale. I think her and Luke had a lot in common. Makes me shake my head up here with all these brainiacs---
We hope to finish treatments on May 27 and then have port removal June 1st or so.
Thanks for all the continued prayers, especially all our new found friends in Attleboro.
Nicole
Monday, May 10, 2004 6:30 PM CDT
Treatment 16 down and now we have finished more than we need to complete. Downhill from here baby.
Luke had a good weekend and although he is not eating as much as previous, he is holding his own weight wise and spent the weekend with lots of activities.
The circus was wonderful and as Luke will tell you he only stayed for 1 1/2 hours because he started to get bored. I know you are thinking how can a child become bored at the circus, but leave it to Luke!
We then met up with Aunt Tracy and had a great time in Newport, RI exploring the town, the shops, the arcade where Luke kicked butt at the squirter game, ate at the Black Pearl (Thanks Mark, it was a good recommendation) and then drove round and round looking at the amazing mansions. WOW. Lastly, we finished at the park where Luke explored the slides and bridges and spinning wheel. Poor Tracy had a long drive but we are so so so happy she spent the day with us. It was so much fun and I hope to post the pictures, even the one with our heads barely on the shot.
Mother's Day was a cool rainy day here and after visiting Michael in the hospital we crashed at home. Today after treatment we went with Arual and his family to celebrate his 5th birthday at Chilli's and then at Toys R Us. Luke and I ended the day at the Boston Commons Playground and had a nice full day. Now we are home watching Disney Channel, a standard fare in this house.
We are excited to come home again and it struck me today that Saturday is Luke's 2nd Anniversary. Two hears ago Saturday on May 15, 2002, our lives changed forever with his diagnosis. It is always a hard decision to celebrate or try to forget the day. I choose to celebrate the day since although a bad diagnosis, we found it and have been able to work towards beating it. Having never found it would have brought a much different result. Every day and every year I celebrate that Luke is here and happy and healthy and despite the crazy lifestyle he has lived for the last 2 years and the crazy treatments he has endured and all the medicines and tests and MRIs and scans and drugs of drugs of drugs and surgeries and pain and nausea and headaches etc., he is still here fighting and touching people wherever we go. Our lives have become full of amazing people and we are forever committed to fighting with Luke, as well as making the journey better for those that follow.
Thank you all for your ongoing support and assistance. Thank you for helping to spread the word and help people realize that this is a growing problem with children affecting over 10,000 children a year. Thank you for contributing of time and effort to help Luke fight.
If you want to leave words, thoughts, emotions, about the anniversary date as it approaches, we would appreciate sharing in the thoughts with you. For as I have said, it is a mixed blessing and we are celebrating life.
Love to all Nicole
Friday, May 7, 2004 10:53 AM CDT
Greetings from sunny Boston. Another week down and only 3 more to go plus port removal. Luke has had ups and downs this week. Some days he feels really good but most other days he has been complaining of belly pain which actually wakes him up in the middle of the night.
Some breathing issues this weeks as well but I think the trick is to put an airway tube in right away to avoid obstructions down the road during treatment sesssions. We are all on a learning curve as to what Luke's body needs. He certainly tolerates a lot of sleepy medicine and then they wonder why he sleeps long time??
Luke and I are to be heading to the circus tomorrow in Providence at of all things the DUNKIN DONUTS center. Coffee anyone?? Then we hope to connect with our bestest pal from NY for fun and frolic.
Mother's day will be spent just with Luke and I and maybe some Italian dinner!
I have been having an emotional rollercoaster ride as well this week with Luke's quirks as well as medical issues. We are going to try another ant-acid and see if it helps his belly issues and then maybe he can feel more like himself again.
Reminder to all that the GARAGE SALE FUNDRAISER for the Pediatric Oncology Support Group is this weekend at my house, right behind Toys R US and Chilli's in Whitehall. Be there or be square. Thanks to everyone who contributed and donated their unneeded items and thanks to my sisters and my husband who are handling it all in my absence!
Continue to keep us in your prayer as well as Alexis & Isabella and John. PS: For those who thought John was the dark mysterious man by the Harley...he is not. But check out the photo album for pix of John & Luke!
Also, please continue to pray for Michael as he re-enters the hospital this weekend, Marshall who is doing well right now, the Sheriff family who lost their 15 year old daughter this week, Caitlyn, Ryan, Arual, Austin and all the other amazing brave children who fight every day in their own battles. We love them all.
Nicole PS: Recent observations of Boston: Everyone runs, there is no such thing as a beater car only luxury up here!, Flip flops are definately in even at the workplace,
Monday, May 3, 2004 7:17 AM CDT
Well, we are finally back safe and sound in Boston. Of course our trip was not without adventure and "a little screaming at that man" (as Luke will tell you) who would not let us on the airplane.
But, the weekend was jammed full of fun and love. Luke and I counted that we had about 26 people come through our doors Saturday and Sunday and it left little time for all Mommy's to-do list. However, what a joy to spend time with my beautiful girls and to see Luke laughing and running around like his old self. He loved his playdate with beautiful Elizabeth and the yard sign from Sylvia. He loved the balloons and the cake, and all the food. He loved the Hulk gumball machine and the coloring books. But, more than all else, he loved all 26 of those people who walked through the door. He loved being immersed in love and attention and he loved seeing his sisters and his Daddy.
John's letter is so amazing and wonderful and of course, made me laugh and cry. I do get overly focused in my to-do list that I overlook the most amazing part of having my to-do list. The people I do it for. I have the most attentive and supportive husband in the world. He loves me so much sometimes it is overwhelming. He may not be the best cook, or gardener or laundry man, but he manages to take great care of our girls and the house and the laundry and the meals all while continuing to work and transport Alexis & Isabella back and forth every day. In case I did not say it loud enough before, I love you John!
I learned a few more lessons this weekend as well that I would like to share. 1. No matter how long the journey, all that matters is that you reach your destination. We did not have great flight experiences this weekend, but it all faded after we made it home. 2. It is physically possible to carry a purse, 2 carryons and one booster seat through two airports, on 2 planes, on a bus, on 2 subways and walk 1/2 block. What arm muscles. 3. As strong as you think you are, you are always stronger when you need to be and as incompetent as you think you may be, as a mother you always have the instinct to know what do to. 4. The best mothers really are viewed by their kids as the meanest mothers in the world. 5. Absence does make the heart grow fonder. 6. Children do change every day and being away from them for weeks at a time, will really make this pronounced. 7. TV really can be educational - cows produce 8 gallons of milk in a day.
Thank you all for being part of our weekend. We are excited to come home in 2 weeks with less to do and more time to spend with each other. Keep all our friends and family in your thoughts as well as the growing list of children who need extra prayers for their various problems. We still do not know what Luke's end result will be, but we are appreciating every step of the journey as it has enriched us in more ways than we could ever verbalize and it has shown us the amazing strength and courage of our children.
Love to all, especially my family. Nicole
Friday, April 30, 2004 6:15 AM CDT
This may be my last journal entry until next week as WE ARE GOING HOME TONIGHT for the weekend. YEH. I cannot wait to see my girls.
Luke continues to do well with his treatments. Yesterday he had some gurgling and sinal breathing but he did well. Today he is sneezing again so it is anyone's guess what is going on. We have to be very careful to stay away from any one who is sick because Luke catching something will not only delay treatment but give him great difficulty in breathing.
Yesterday was a lovely day outside and we enjoyed it by spraying silly string all over the place. Love that stuff! Luke has had some minor issues with his mature words and the manner in which he speaks to his mother. In part I understand he may be frustrated and take it out on me because I am here, I take him to the appointments, etc. however it is still unacceptable and although I pick my battles, I make sure he knows I do not appreciate his mouth. His intelligence is a mixed blessing; I love how he can understand things we discuss but then he also has the capacity to store them for later use against me or manipulate his words to gain empathy.
This weekend will be filled with fun and lots of visits which is exactly what Luke needs (providing you are all well!). He thrives on attention and people and is a bit lost without his normal posse.
Thanks for all the continued blessings, prayers and kindness to us as well as toward John and Alexis & Isabella. They are very important as well and are going through a similar strain being away from Luke and I.
Love Nicole
Wednesday, April 28, 2004 5:42 AM CDT
Wow. We are so overwhelmed this morning. Yesterday when we arrived home after an afternoon with the Rotondi's, we were greeted at the door with a beautiful bouquet of balloons and an equally adorable teddy compliments of all of Luke's classmates. It is awesome!!
Then, we had to have the doorman carry a large package up to our apartment. Once Luke & I made our way through all the packing peanuts, we were amazed by the generous gifts inside. Luke got 3 new rescue heroes: Thurston, Pat Pending & Moe Zambeek. Luke was so excited also to receive new Superman pajamas. So this morning, bright and early, we are flying around the apartment superman style with our new rescue hero friends. LORI HAMMERS YOU ROCK.
But, that was not enough because I of course was also treated to not one, but 3 bottles of california wine complete with corkscrew and wine glass. I guess ask and ye shall receive however, it is still a bit overwhelming for me and the generosity sometimes is in excess.
Let's not forget the gifts we leave the Rotondi house with every day we visit. YOU'RE THE BEST!
Amazing Anna continues her campaign on our behalf and continues to raise awareness in Mass while helping to defray costs for us up here. She is awesome! WE have been so blessed by this family and all they do every day in every way.
Luke had a rough day again yesterday, not eating much and battling nausea and stomach discomfort most of the afternoon. But, today is another day and we hope all will again fade and he will feel more like himself every day.
Again, thank everyone for all the love, prayers, phone calls, cards, packages, gifts, money, calling cards, and more. You are all making our trip to Boston and this journey much more enjoyable for Luke and although I worry about the excess, for Luke and all that he has endured, that is not really an issue.
Love Nicole
Tuesday, April 27, 2004 11:08 AM CDT
Luke just loves all the phone calls just for him and all the mail. He loves to rub it in to Mom that I do not get any phone calls or mail anymore. Suits me fine. I actually get a rest.
Luke did amazing yesterday and today. Yesterday after his treatment he still required some oxygen, but has been feeling better. Also yesterday Luke had to have a CT Scan wearing his mask attached to the table. I told him he could do it awake but no one, including Luke was sure. However, he did amazing. He put the mask on, laid perfectly still attached to the table with out a word or moving for the entire scan. EVERYONE WAS SO IMPRESSED and PROUD OF LUKE, including me. I knew he could do it and I think he even surprised himself. But, when Luke sets his mind to do something there is nothing he cannot accomplish. The hardest part is getting him to set his mind for it.
Today Luke did better than ever. After his treatment, he held his own and for the first time DID NOT require any oxygen afterwards. He maintained saturation all by himself. I was impressed. He slept for another hour and then awoke and finished his cookie from Paces. He loves these Italian bakeries!
Luke still complains of being bored and takes anxiety out on Mom. I think because Luke is such a social creature it is not actual boredom in the traditional sense but more that he misses his people. He loves and craves being around people and visited by people and surrounded by people. Up here, although he sees a lot of people at the hospital, it just isn't the same. I am going to try to take him to the the emergency kid care on a day when it is not so busy and maybe he can play with some kids. Obviously, I am just not that exciting to a five year old, even when I try to be goofy.
Luke is counting down the days till he gets home and I know all of you will come to visit. He is especially excited about his playdate.
Well, we are off to entertain Luke a bit today with Isabella and Alexia. I know it gets quite confusing, but these girls are his pseudo-sisters up here in Mass.
One last note of my recent realizations. It takes less than 2 weeks for your eyebrows to go crazy (someone send me a tweezer please) and more patience than one expects to make it through this journey. But, God has been very good to us and every day I keep praying for the patience I need. Last realization is that there is nothing more perfect than a sleeping child. I love watching Luke sleep!
Blessings to all, especially today our friends Austin who only has 4 more proton treatments, Arual who is 1/2 way done, Michael who is beginning his journey, my little Luke to remain strong and to win his battle and my beautiful girls Alexis & Isabella who I miss terribly!
PS: We learned today that the social worker has a slush fund in which monies are available to be used to get cool things for the kids up here. If anyone is interested in making a donation, this is another great one. You can contact and send donations to Evelyn Malkin, MSW, LICSW, Mass General Hospital, 55 Fruit Street, Boston, MA 02114-2696, emalkin@partners.org, 617-726-8187. Love Nicole
Sunday, April 25, 2004 7:10 PM CDT
Just a quick note to give you an update on our weekend. Luke felt the best he has in a long time. He was energetic and eating and although he had a few moments of belly pain and slight headache, he was running around like good ol' Luke. We LOVED every minute of it.
We also had a fun weekend with Luke's Daddy and his Uncle Eddie & Aunt Judy. We saw the Aquarium, shopped downtown (Luke picked up a cool new Spiderman backpack), ate more seafood (Luke always eats a burger or hotdog at these joints) and enjoyed the sights. Sunday we explored Providence, RI and checked out Brown University Bookstore. As Uncle Eddie said, you just don't see many Brown t-shirts anywhere do you?
The weather was cooler than it has been and mostly cool and rain for this week, but hopefully that will all change.
Luke began the countdown till Friday when we fly home. He has a busy week ---protons, CT Scans, Brain Tumor Clinic,-- but he cannot wait to see everyone. So, if you are around, please stop by this coming weekend if you want to say hello or give us a call.
PS: I have had inquiries about charities that we feel are worthy in this cause. Our favorites are: Children's Brain Tumor Foundation (cbtf.org), Caringbridge (caringbridge.org) and Camp Sunshine (campsunshine.org) and of course, Pediatric Oncology Support Group of the LV (cancersupportgroup.org).
More later Love to all Nicole
Friday, April 23, 2004 10:58 AM CDT
Friday and five. Treatment 5 was successful and with each treatment Luke seems a little better. Atropine was used in the past (Thanks Liz) but the last two days they just used the sleep med and it worked. He still gurgles and requires blowby oxygen but he recovers quickly. The blood pressure thing gets me crazy. I guess it is normal but he drops to 88/35. Enough of that medical stuff.
Luke still has occasional headaches and nausea and the team asked me to keep a diary for him so they can pinpoint more specifically. Are the shunts draining too quickly? Is the 3rd ventricle becoming a problem? Luke vomited yesterday for the first time in 2 weeks but that is certainly not making me happy. However, if he tolerates stuff otherwise I am also not to keen on them going in surgically at this point anyway because healing is compromised during radiation. Luke is strong, we will let him be the guide.
Luke had a great time again with Alexia & Isabella yesterday and is really excited about his Dad and Uncle & Aunt coming this weekend. Actually, as Luke says, it was suppose to be a surprise but his Aunt Suey let the cat out of the bag so now he knows. Hopefully, we will have sun as it really rainy now.
Otherwise, we have not gotten to do much as Luke seems to prefer down time after his treatments. He loves to check his mail and has gotten so many amazing cards and letters and packages. Thanks to all of you. He loves the McD's gift certificates and per California Sunshine we are listing the following wish list:
1. Rescue Heroes, specifically those he still needs to collect: Moe Zambeek & Spotter, Pat Pending & Speck, Typhoon & Hyrdrofoil, Red Wood & Tent, Thurston Nomore & Rolls, Reed Marsh & Swamp skimmer, (we have to think of the rest)
2. Socks (my son is so practical)
3. Pajamas cause you know my pajamas are getting too small Mom.
4. Keep in mind Luke loves anything Disney Adventure Heroes: Hercules, Tarzan, Peter Pan & Aladdin
5. Batman, Superman
6. Bottle of wine, oops, that is my wish.
HAHAHA Love you all and thanks for the continued love, prayers, generosity. We can never thank all of you but I hope you all know how gracious we are and how close to our hearts you will always remain! PS: I thought this was priceless. Some of you may relate to this list all so well, for others, you may be amazed: You know you are the parent of a kid with cancer when...
You carry a tube of Emla in your purse instead a tube of lipstick Kids with hair look kind of strange to you You can sleep anywhere, and anything that reclines more than 15 degrees looks "comfy" Your spouse asks what that sexy perfume is, and it's Betadine You don't realize the sharps container is on the kitchen table until half way through dinner You enjoy the drive at 3:00am to emergency because there aren't any other cars on the freeway You can name all the equipment used on ER You can dx the patients on ER before the Docs do You hear a truck backing up and you think the IV is beeping You are so proud when your baby finally gets hair (and he is 8)! Your new bathroom trash can has "Hazardous Waste" written on it (recycled sharps container) You can maneuver a double pole with six boxes and a kid riding, on a tour of the hospital, and make it back to the room before the low-battery alarm sounds and the kid has to pee You realize you've been home two weeks, and you're still measuring I's and O's The nurses stop responding to the IV alarm, knowing you'll fix it anyway Your child asks what's for dinner, and you automatically reach for the bag of hyperal Your 2-year-old knows where all of the medical equipment goes, and how to use it Your child's first word is a medical term You keep a bag packed at all times like your 9 1/2 months pregnant You can eat with one hand while you hold the barf bucket with the other Your child's bedroom looks like a Toys R Us® store You ask your CPA if bribe toys are tax deductible You correct the doctors spelling on the chemo meds You can read the doctors prescription word for word, and are asked to decipher it by the pharmacist You know medical terminology better than your family practitioner There are 4 new Mercedes in the doctors' parking lot due to your child's payments The pharmacy sends your family Christmas presents You get excited when there is a 15 ff sale at the pharmacy The local needle program comes to your door You have a syringe in your purse and you're not a diabetic You have more meds in your cupboard than food You can read your son's chart better than his nurse You look like you're tan but it's really Betadine stains You and your hubby get matching stress tattoos for fun You start teaching your daughter the parts of her body, and you point to her chest, and she says that's her port None of the security guards on the pediatric floor ask for your ID anymore, and you're on first-name basis with the operating room staff Medical students ask to borrow your notes Your toddler refuses to sit on Santa's lap because he's too germy from all the other kids You wrap presents and packages with medical tape Your main source of nutrition comes from aspirin Your child is more familiar with CT scan & bone scan pictures than the portrait studio!!! When you use the term six-pack, you are talking about platelets, not Budweiser® Your child is going on a field trip and wants to know if you have signed his "remission" slip Your child can easily pronounce "Neuroblastoma," "chemotherapy" and "coagulate," but has trouble pronouncing the state you live in Your child uses Legos® to build "MRI" machines You don't have to ask, "What's that mean" to the previous 44 items You hear yourself say the words, "I'll buy you anything you want" at least twice a month You know you are the friend of a family with a child with cancer when you call to check the chemo schedule and ask, "How will her counts be on, say, the 11th?" before you schedule a birthday party You have been asked by more than 25 friends and family members, "So, when is his next treatment?" Your four year old's critique of the medical student's examination skills is the same as the supervising physician's A younger sibling identifies a nipple as "my port site" Your daughter has more Beanie Babies in her room than the specialty store in the mall You really think this list is funny, when most normal people either don't get it or start to cry! When your seven year old begins to sound like Doogie Howser, MD You give out barf buckets as birthday party favors When a Raio Flyer® wagon is considered an essential transportation device When you walk down the hall in your house holding your baby and feel odd because you're not trailing an IV pole with the other hand When the siblings want to know what the child's counts are to see if they can go inside and eat at McDonald's You think nothing of taking your 3 year old into a department store in his underwear because he has thrown up on his last set of clothes and you are an hour away from home and have an important doctor's appointment Six months after treatment ends and the hair starts to grow back someone stops you in the grocery store and says, "I just love her haircut. Where did you get it done ?" When you send copies of this list to all your cancer-parent friends When your idea of funny is to ask, "Where's your line?" and then giggle while your toddler takes off all of her clothes looking for it—even though you know it has just been removed You can reset the IV machines overnight, in your sleep, every 30 minutes without waking up once and still call it a good nights sleep!!! You have a kid who did not wake up by 5 AM on Christmas morning Your kid takes more pills than you When you say "Get up and smell the coffee" your kid says "The coffee's going to make me puke" When your kid asks for a Happy Meal® you don't say, "Wait until we get home to eat." Rather, "Really?" (unless of course your kid is on prednisone, when you say, "A Happy Meal or a Super-Sized Value Meal?") Your best friend buys you a relaxation tape for your birthday and you swear it doesn't work right You cannot try auroma therapy for yourself because the smells trigger nausea in your kid Your kid wears out a pair of Nikes® pushing an IV pole around the hospital during BMT recovery The "CK" on your tee shirt stands for Chemo Kid, not Calvin Klein® You make Jell-O® with Pedialite® You draw smily-faces on your isolation masks Your kid has received enough get-well cards to fuel a small bon-fire Your child receives soooo many toys while in the hospital that at Christmas time that you can now open your own toy store When you are thankful for steroids because there will not be turkey leftovers after the Thanksgiving meal Every little thing can make you cry in a heartbeat, but this list, on the other hand, has you rolling on the floor! When your child is estatic because all she's getting is counts from her arm and a shot in her leg (Now that's a good day on the chemo ward!) You can tell the nurses where their supplies are When you can whip up a seven-course meal in minutes for a six-year old having a prednisone pig out When your child tackles you screaming, "I'm starving to death! Why won't you feed me?!" in public and you can laugh instead of scolding them for their manners You can make a variety of arts and crafts out of hospital supplies: isolation masks become turtles and spinal fluid tubes filled with glitter and baby oil make great key chains When the doctor finally enters the examination room and finds you and your child with latex glove powder around your mouth from blowing up the gloves The nurses and techs call out, "see you next week!" with true joy knowing that you will pass on all the get-well candy ("No way I can eat that, I'll throw up!") and the leftover "bribe-sicles" that you couldn't get her to eat When it's time for your 2 year to have her vital signs taken and she lifts her arm and sticks out her leg, without crying or fighting you Your child names pills after superheros When you are helping your daughter, the sibling, pull her hair into a ponytail and she says, "Look at my forehead, I have great veins there don't I? If I ever need to get a shot, I could get it there!" When you have a collection of "throw-up buckets" in every room of your house! At dinner your, one son refers to ketchup as blood and the son with ALL corrects him because blood is a darker red. The local small town emergency room calls you at home and asks what size huber needles to stock in case they have to access your child's port and then ask if you could inservice them. The guys use viale tops instead of poker chips on poker night When you think that anything that your child will eat and keep down is a "nutritious meal", even if it is chocolate cookies and candy Your two-year old learns his colors from all the pills he has to take! All your body lotion and tattoo bandaids are gone because the doll needed Emla® too! When all the other boys in the seventh grade shave thier heads to look as cool as your son. When your 6 year old is making appointments for the nursing staff to do their manicures, because the love her nail art. A wing of the pharmacy is now dedicated to your family. Training for the New York City Marathon consists of laps around the Pediatric Oncology Ward with your kid in her wheel chair. When your child has done all of the puzzles in the play room at the hospital so many times that she/he can now do them in five minutes with the pieces upside down. Your 2 year old (with a chest port) points to your left breast and says with confidence to the oncologist: "That's Mommy's owie!" Your child has his/her own website to keep family and friends updated on his/her progress because calling everyone gets to be too expensive and repeating the report over and over is tiring.
Love Nicole
Wednesday, April 21, 2004 11:15 AM CDT
Yesterday Luke had a new complaint to add to his nausea and headache -- now eye pressure and pain has been causing him trouble. I hope it is nothing but at this point who knows. We will see the doctors shortly to check into this as well as his nausea and decreased appetite. The kid never eats!
Yesterday Alexia & Isabella, as well as Auntie Anna and Uncle Mark, helped relieve some of Luke's woes and we had another lovely afternoon playing in the backyard and with toys. THANKS!
Today of course, Luke had problems with the anesthesia and gurgling again. Seems he goes down to sleep quickly but then fights the anesthesia requiring him to get more. To complicate matters, he has the dripping down his throat which ends up "in the wrong pipe" causing him to convulse to try to expel it. Normally we would cough but when you are anesthetized, you are suppressing your reflex for doing that coughing. It is a horrid sight to see, and even when I am waiting in the waiting room, I am pacing in fear of that.
After his protons he came out and could not maintain oxygen saturation again without blowby or constant oxygen. After about 20 minutes, the anesthesiologist gave him a nebulizer treatment of Albuterol which seemed to help clear him a little and then he awoke shortly thereafter. CRAZY.
It seems that Luke is the ONLY one having such a time of it here and everyone else leaves feeling great and are normal for the rest of the day. Leave it to my Buglet to complicate things! Guess he is keeping everyone on their toes.
More later we are off to more appointments.
Nicole
Tuesday, April 20, 2004 11:32 AM CDT
Two (2) treatments down and only 27 more to go. Luke did well again today but the gurgles came back and a minor port malfunction caused his day, like all others so far, to be more complicated than the norm. He is still a little crabby from being woken up again and of course, it taking it out on me. That is the hardest part.
We are having lunch now: Luke of course is having his favorite pasta and I am eating the last left-over Chinese food from my fridge.
Luke is still having a lot of nausea and the Dr. today told me to keep an eye on it. We are following with Oncology weekly and will see Neurosurgery next week. As I mentioned, they are real team-discipline approach so they all follow you during your treatment. It is fabulous.
We hope to get over the visit Michael again today to see how his treatment is going and how his mom is feeling these days. Also, if Luke is up to it, we will head down to see Alexia & Isabella and play outside this afternoon.
Love to all More later Nicole PS: Thanks for all the mail and packages. Luke loved his Batman car launcher today and anticipates the 25 cards from Devon's class!
Monday, April 19, 2004 5:57 PM CDT
At long last I find a free moment and a clear head to jot down some notes of today, Luke's First Proton session.
We started about 45 minutes late again. He was a little gurgly but was able to be sedated and maintain oxygen level that was acceptable to receive his entire treatment. He did not have a reaction to the mask so we think he might have reacted to the previous decongestant.
Luke slept alot. We tried to wake him at 1/2 hour but he fell back to sleep. Awoke him again at another 1/2 hour and he actually did get up with prodding but he was quite cranky and crabby. We went to Wendy's with another family and then to the park at Boston Commons, but Luke was acting crazy and wanted to go home. I think he still was very tired and did not feel himself.
He played simply at home and we built a Playdoh seaworld. Finally, he crashed on the couch at about 6pm. He sweats a lot and I am not sure what that means and he also still has had a lot of nausea today.
His appetite has gotten better but is still not normal. But, we press on and hope every day we are little closer to that "normal".
Otherwise, Luke was upset about having to get the needle for his port today. How quickly he has forgotten that process. I hope each week that gets easier too.
On a high point, thank you to all those Angels of Hope who have overwhelmed Luke with over 11 packages today of angels. Also, thanks to all you card writers, he received 6 today as well. Bobby the postman knows Luke now as does the girl downstairs who signs for the packages.
Today was a nice day with lots of sun and a crisp breeze. The marathon runners probably did not agree, but it was a busy Boston day. Marathon. Red Socks. Bruins. To a Bostonian, it doesn't get any better than this!
Today I felt myself get frustrated with Luke and his ability to get himself so psyched in a negative way about something that he makes himself physically sick. He panics, he is frightened. However, I realize now that this is a scary journey. This is life and death. He may not understand the specifics, but he shares the fears, he knows the pain all too well and maybe in his own way, he is presented the fears as best he knows. He said today that he thought his tumor would be there for a thousand years and nothing would ever help. Sad words to my ears. I told him to stop with the negativity that life is everyday full of choices and for better or worse, if we choose to be happy our body will follow. If we choose to be sad, so will our body. I guess I need to take my own advice. Sometimes, I try really hard to put on a good face when I don't feel it inside. But know of this I am confident: we are lucky to be here and protons rock. So, looks like year 999 is rolling around.
God Bless nicole
Sunday, April 18, 2004 4:52 PM CDT
Well they say no news is good news. So it is. We had a very nice weekend enjoying Boston with Luke's aunts (my sisters Pam & Suzette) and his Pappy. Luke felt pretty good most of the time, but tired very easily and had moments of immediate nausea and vomiting.
Saturday we explored Boston on a DUCW Tour, visited Quincy Market, did a lot of walking and finally crashed with a bunch of chinese food.
Today we took the T subway and explored the Children's Museum (it is just like Please Touch in Philly) and ate at the No Name Seafood Restaurant down on Pier 15. Luke even enjoyed a cab ride home because Pappy was darn tired of walking in this crazy city!
It was also very sentimental for me as well because we passed lots of spots that reminded me of my last visit to Boston in 1997 with John when we were childless. Very fond memories!
I want to take a moment to thank all the outpouring that we continue to receive. Luke loves to check our mailbox and has been showed with lots of cards and special gifts. We even got the conceirge to hand deliver a package because he thought it was perishable as it was in a Corbi's Pizza box. I was actually disappointed there was no pizza. HAHA.
Also a special thanks to Penn State and Cherrydale Farms who have continued to offer and collect on our behalf. Thanks for all of those who remember Alexis & Isabella back home and the challenges they face without us all together as a family.
Also, thanks to everyone who writes in our guestbook or sends me personal emails to give us encouragement and to shower us with well wishes. It is a beautiful city, but can be lonely when one remembers why we are here and all we left back home. Thanks for bringing our home to us up here.
Tomorrow we embark on our next attempt at Protons. Luke is still a bit congested but sounds much better. I may try a little allergy med to see if that helps also.
Love to all Nicole
Friday, April 16, 2004 5:35 AM CDT
Well, Houston we have a problem. Yesterday Luke and I headed over to Protons. Met a lot of families there, including a little boy almost 5 from Puerto Rico who has almost the same tumor in the same location as Luke.
Although they were running about 45 minutes behind, Luke finally went in around 12:00 pm and was set up and sedated by 12:20 pm. I left him in the Gantry room and went to wait for him to come out. On time about 25 minutes later he was wheeled out, but I learned that Luke never received protons. Because he had a little congestion in his nose, when they put on the mask which allows them to line up the beams, it closed his mouth and he was unable to breath. The congestion although clear and appearing only in the sinuses and harmful in and of itself, it prevents Luke from breathing through his nose. So when the closed his mouth shut with the mask, his oxygen levels dropped and his other vitals were affected as well.
They tried various ways to work around it but because the mask is a closed unit, they could not put a tube in either. He receoved quickly in the recovery room from the sedation and was starving. We also noted at that point that Luke had been scratching and itching his head a lot. He seemed to have developed an allergic reaction to the mask. Go figure. Now what do we do???
Off we went to lunch and then we went to his Radiation Oncologist, Dr. Yock. They discussed attempting to line him up on Friday using tape, or as a last resort small tattoos so they could avoid the mask and line him up properly. I was game for anything but the the sinusitis seemed to be a greatest problem.
Dr. Yock asked that Luke be seen by the oncologist to see if there was any magic to work to move things along. So off we went to see Dr. Hyung. As she was evaluating Luke, the anesthesia office phoned to state that they preferred that Luke skip Friday and start Monday to give him time to clear out the sinuses and hopefully have a better pathway. Oncology did blood draws, nose swabs (Luke hated that part) and then de-accessed his port and gave us the rest of the week/weekend off.
It will be nice to be able to relax after the crazy couple days, but I worry a lot about Luke again. First, he is still having nausea associated with the tumor, second although he hasn't complained yet, the headaches could follow. Right now he is still experiencing lots of pain with the port site, but Tylenol seems to be helping. In fact, they gave him Tylenol with Codeine, but I think I should fill that script for myself -- when will this Migraine go away???
All and all, Luke is well. Despite some pain and nausea, we are going to to try to enjoy our weekend exploring. Luke was happy to visit with Anna and Mark and especially his "Bostonian sisters" Alexia and Isabella. In fact, he did not want to leave last night as he and Alexia fell asleep watching tv. We never did make it to the pharmacy or grocery store, so I guess that is what we shall do again. It is so nice though to see the girls, but it only makes me miss my girls more. So, love to you Alexis and Isabella. Mommy thinks of you constantly and hopes you and Daddy are having a great time.
Blessings and prayers to Marshall today for good luck on his MRI, to Michael who is having his shunts and central line placed today and to all our new brave little warriors: Caitlin, Ahendro, Tally, Austin, and all those who we love and pray for daily.
Love Nicole
Thursday, April 15, 2004 8:35 AM CDT
UGGHH!! Well yesterday's port surgery wasn't as uneventful as planned. Luke started with a little bit of head congestion last week but it proved problematic yesterday. The port surgery went well but at the end Luke's oxygen level dropped and he had to be intubated. Then his oxygen saturation levels would not maintain without blow by oxygen. We did that for a couple of hours but every time we tried to take it away, he dropped again. Finally after a long nap and a good cough, he was able to maintain his saturation between 95 and 97.
Then the chest xray showed upper right lobe atelectasis. After exam they decided he sounded clear enough in his lungs but his breathing was not normal and he was "huffing". So it was decided he would stay for observation. The pediatrician on call ordered a saline nebulizer treatment to help with the dryness and the congestion which was only exacerbated by the intubation tube.
But, the overnight stay turned out to be a mixed blessing. After an entire day in short day surgery, we finally got a bed upstairs in a room with a little 4 year old boy Michael. Turns out Michael was just diagnosed with a brain tumor last Thursday and his family, especially his mom Jan, are in shock. They think we were a Godsend to be in the room and offer hope and share fears. That I could share with them the crazy journey that is a brain tumor, but also the joys you need to find every day in the bravery and strength of our children. Jan asked me how do you do it? Every day one day at a time and Michael will show her how to be strong, just as Luke has shown me.
We promised we would visit with them as they are just beginning the craziness of testing, surgeries and shunt insertion. I feel blessed that we were placed in that room to help another family find comfort along this trip to "Holland". That is another story I have yet to share with Jan, but soon I will drop off her map of Holland and hopefully she will find both humor and comfort in that story.
Luke is in pain. The port was placed lower than before over the chest bone and he is really hurting with this one. They will keep it accessed Monday through Friday and then deaccess it on Friday so he has a weekend free. Makes sense but it is a little cumbersome too.
We will write more once we have an idea of how this proton thing will work out. So far he is scheduled for 11:00 treatments which is hard because he cannot eat 6-8 hours before. So he can get a little hungry before treatment. I only worry as the surgery did yesterday, that it gives him no appetite than he surely will not be eating at all. Hopefully, he will overcome that.
The rain is still coming up here and it is cold and dreary. But, we are looking forward to sunny days and some surprise visitors this weekend.
More later Love Nicole
Wednesday, April 14, 2004 4:50 AM CDT
Amazing what less than 24 hours can change. Forget the surgery at Lehigh Valley CHOP. We are in BOSTON!
Talk about crazy driving conditions. Can you say torrential downpours??? I would have been better in a sailboat than a car last night. Luckily, I made it up here safe and sound in 6 hours flat.
A few things I learned upon the way too that I would like to share. First off, it takes approximately 48 ounces of Dunkin Donuts coffee before the coffee actually tastes like garbage. Second, what goes in must come out and sometimes in really really large quantities of fluid. Third, God does answer prayers even when you are praying from the car that the rain finally let up a little so even though your windshield wipers are moving as fast as they can, you really can start to see out of the windshield. Fourth, it is perfectly normal to talk to yourself while driving long distances. For that matter, it is normal to talk to the road signs, as well as the road and remind them that they need repair and are really really bumpy. Lastly, it is never too late to request extra prayers or guidance, even on the eve of something huge, as you are driving through a rainstorm. Thanks Monsignor Muntone!
We are now in Boston and in a few hours Luke will have surgery at the Wang Building for his port insertion. They plan on leaving the IV live in his arm so it can be used tomorrow at his first protons session. Even as I type that I get butterflies in my stomach. Luke was really nervous last night as we talked about his surgery. I told him, man if you can go through all that you have, the port in the big picture is a speck of dust. It took a few minutes to explain what a big picture is but he understood. I told him that tumor is crazy and we need to take care of business and Daddy will take care of things back home and Alexis & Isabella and we have to take care of business here. That means being strong and leaving Boston a winner.
Luke is consumed a little too by Aunt Suey's graduation party that she is planning. He seems to think it is when we come home on April 30 but was saddened to learn that it is actually when we come home for good. But, his frown turned to smiles when I said don't forget we have Alexia and Isabella right up here with Aunt Anna and Uncle Mark to help us through the Boston journey. He loves being the big brother to even more little sisters.
Luke also was interested last night as I was trying to sleep and he was refreshed from his 6 hour nap in the car, about his middle name Edmund. I explained that he was named after PopPop. So, he wonders what becomes of Pappy's name? I told him that was saved if we had another little boy, Dylan Joseph. He just laughed and laughed. I guess you have to be a kid to appreciate the humor. But Mommy, we have girls.
Luke's protons will begin on Thursday and he is set for 11:15 a.m. slots. Glad he got in but the timing I wish was earlier. He cannot eat 8 hours before so he will be quite an unhappy man when he learns that every day he doesn't get to eat until after lunch time. He is very big on that three meal a day thing, at a minimum.
Well, I am going to start to get myself moving some more here. Love to all and I will update later. No answering machine here that I can find, so if you can and we do not answer, just give us a try later. Early mornings probably will be good starting Friday. Weekends are good. Or even late afternoons.
Love & Kisses Nicole PS: Thanks to the Whitehall Soccer girls team for all the well wishes for Luke. Here he is posing with his "girls" yesterday at their practice!
Tuesday, April 13, 2004 5:58 AM CDT
Well, things are really in motion. I am overwhelmed with packing and tying up loose ends but I hope the end justifies the means.
Luke is scheduled for surgery to insert his port tomorrow at 7:00 a.m. at CHOP, Lehigh Valley. Then, we will jump in the car and head right up to Boston so we can get settled a little bit before Thursday protons begin. I cannot wait at this point because Luke is really quite sick with nausea and headaches and vomiting from the tumor pressure. He sleeps a lot and really has no appetite. A far cry from the steroidal Luke!
We thank every one for their outpouring of love and prayers and even those who do so at 11:30 pm at night from Sunny California. I appreciate them all because I am reminded that we are not alone and that God is receiving a push every day to take extra care of Luke. I know that his plan is not necessarily our plan so I am trying to trust his wisdom over our own. I know that we have been also blessed by all our friends and family who have rallied around us with support in all different ways. Thank you to Liz for the dinners she is arranging -- it leaves one less thing for me to worry about for John and the girls. THanks to Beth, Lynne, Ann, Kristan and all the rest who remind me every day that they can help with anything, especially the girls should we need it. Thanks to my sisters for making sure our fundraising garage sale event gets organized in my absence and that John doesn't feel all alone while I am not here.
Thank you to every one at work who is taking over my responsibilities while I am away and pushing me to only focus on Luke at this time. Thank you to Karen & AnnMarie who pushed to help make sure everything worked out for this week and always send love and thoughts to their favorite Sticker Man! Thank you to every one who sends Luke smiles, cards and love every day in the mail or through his website. He reads them all and loves every little word you write. Thank you to all of you showering him with graduation wishes and to my sister who is coordinating a little graduation party when he returns complete with cap and gown. Thank you also to all of those of you I did not mention but who do so much that sometimes I cannot even remember all your help.
God Bless you all and those great doctors who will be taking the lead in Luke's treatment.
I received the following from a grand keeper in my life and I thought I would share it with all of you, my other keepers. Thanks again.
Nicole
Keeper It was a way of life, and sometimes it made me crazy. All that re-fixing, reheating, renewing--I wanted just once to be wasteful. Waste meant affluence. Throwing things away meant you knew there'd always be more.
But then my Mother died, and on that clear summer's night, in the warmth of the hospital room, I was struck with the pain of learning that sometimes there isn't any more. Sometimes, what we care about most gets all used up and goes away--never to return.
So while we have it, it's best we love it and care for it and fix it when it's broken and heal when it's sick.
This is true for marriage and old cars and children with bad report cards and dogs with bad hips.
And aging parents and grandparents.
We keep them because they are worth it, because we are worth it. Some things we keep.
Like a best friend that moved away or a classmate we grew up with.
There are just some things that make life important, like people we know are special, and so, we keep them close.
I received this from someone who thought I was a 'keeper'! Then I sent it to people I think of in the same way.
PS: Extra prayers please also for Caitlyn, Marshall, Lauren, Brian and my friends Father-in-Law who had a very bad accident, Brad.
Saturday, April 10, 2004 7:06 PM CDT
We are home from Boston but are returning rather quickly. Luke's MRI from Thursday showed that the tumor has had some growth since the last MRI only 3 1/2 weeks ago. Because the proton series takes time for the physiacist and engineers to map and prepare the proton machine we cannot move too quickly but they want us to start protons on Thursday. This will mean that Luke needs to have surgery either Tuesday or Wednesday of next week for his port and then we are up in Boston almost a week earlier.
Unfortunately, Luke is currently experiencing a lot of headaches and nausea from the pressure of the tumor and I am very saddened by this development. It is also frustrating to be helpless.
On a high note, despite the crazy series of testing and Luke waking up during the MRI and pulling out his IV amidst his stupor, we had an amazing time with our great friends Uncle Mark and Aunt Anna and little Alexia & Isabella. They have been so generous and just pure amazing people and we are so blessed to have them in our lives and hearts.
Uncle Mark is making sure that Toys are Us stays in business while Luke is in town as well as making sure Luke fully explores all the fun things in town. Alexia & ISabella remind Luke of his lovely girls back home and they bring such sparkle to what could be otherwise crazy days. And Anna has been such a great friend and confidont to me -- we just cannot thank them enough.
So as we try to enjoy this Easter season and reflect on the sacrifice of Jesus on our behalf, I am thankful that we have made it this far, we are surrounded by love and prayers and amazing friends and we are moving forward to do what we can to win the battle we are fighting.
Love Nicole
Thursday, April 8, 2004 3:35 AM CDT
Greetings from Boston. As you can see by the time, we are up early and heading into the City for an MRI today. Yesterday was a marathon of driving and appointments but we made excellent time and all worked well. We even had breakfast in Danbury Connecticut at Harold's All Nite Diner. It was Greek and we loved it.
WE FOUND AN APARTMENT that is in a great location right across from the hospital so many thanks to everyone for your efforts but especially Father Mark and Mrs. Fedor who connected us with HOspitality House and together made this work. We even have room for visitors!!
Luke is a little bored at the hospital with all the "talking" as he puts it but it is a necessary. Today is the MRI and tomorrow will be the CT scan which helps with mapping for the radiation as well as making and fitting of the mask for treatment. Luke will be sedated for both days for this to take place.
Next week Luke will have surgery to have another port-o-cath inserted which will allow daily access to his veins for anesthesia. This is an unfortunate necessity with the radiation treatment.
OUr hosts Anna and Mark and their lovely family including their 2 daughters: Alexia & Isabella (talk about coincidence) have been amazing and so generous with their home and their lives. We love them and are so thankful for sharing themselves with us.
Luke is still on the steroids although weaning and his appetite is uncontrollable. This has been the only controversy with us and hopefully he realizes that I am only doing my job as his mom!
Luke is sending a special hello to his Aunt Suey. "I cannot wait for my graduation party at your house. See you soon. I am sorry you cannot come to this MRI today and you kinda surprised me too". LOVE LUKE
More later we are off. Nicole
Monday, April 5, 2004 7:43 PM CDT
Things have gotten quite busy here. Today Luke and I headed down to Philly where he participated in an abbreviated neuro-psych evaluation. He did well from my perspective, but the results will not be in for several weeks. This will provide a good modified baseline for use down the road as the late effects of radiation become evident.
The Neuro-Opthalamic exam showed no change since the last visit so Luke's compromised vision is for the moment, status quo in that place. Luckily he hasn't lost any more vision, but unfortunately the steroids did not help him gain any back. Which brings us to another topic -- those steroids.
Luke has packed on about 10 pounds in the last two weeks from the steroids. He has an unsatiable appetite and I feel horrible limiting him when I do need to. But I have begun weaning him down and hopefully that puffiness will subside.
We are heading to Boston tomorrow night for 3 days of testing and simulations. Luke will need an MRI and CT Scan as well as run through a radiation simulation and have a mask created which will fit over his head and face with a grid allowing the radiation oncologists to pinpoint exact locations as well as make sure that each day he is under treatment, they are hitting the same spots.
I am still quite nervous about this entire adventure, but the fear of not doing anything or something worse befalling him has given me the confidence to press forward. We have not yet secured any housing in Boston but luckily an newly found friend and her family have extended their home to us this week while we are there and this will afford us time to look for apartments too. Thanks Anna & Mark and the girls! God directed our paths to cross!
Although minimal in the grand scheme of life, Luke is going to miss the rest of his school for this year as well as his preschool graduation. It saddens me to remember when Luke missed his first preschool graduation 2 years ago when he was first diagnosed with this dreaded tumor. How life repeats itself. I know this might seem a little selfish in light of all the kindness and well wishes shown to us, but I think it would be very nice if Luke received some thoughts and congrats about his preschool graduation and the great job he has done this year with his education despite all the chemo, therapy, doctors' appointments, testings, setbacks etc. He loves mail almost as much as visits from his favorite people. If you are inclined, you may mail to: Luke Ronco 809 Jefferson Street Whitehall PA 18052
As the time ticks forward, I am trying to cross all the to-dos off my lists so that things in my absence run smoothly. I appreciate all our friends and family who have offered to step in to help take care of Alexis & Isabella and make sure John is fed.
Blessings to all. Nicole
Wednesday, March 31, 2004 6:13 PM CST
Finally connected with Dr. Sutton today although I still do not have all the answers. The cyst drainage could be done however it is a major craniotomy all over again and although he feels quite certain that he can do it safely, he is not convinced that it needs to be done and Boston has taken it back to discuss. I guess Dr. Sutton just wants to get the bigger picture of what they want to accomplish as it appears the cysts have nothing to do with the vision loss. I trust Dr. Sutton and I will await to hear what Boston thinks tomorrow.
We are on track for treatments to start mid April - around the 19th. Things will have to happen fast soon since that is only a few weeks away. Still trying to coordinate care for the girls so John does not get overwhelmed. We are still awaiting info from our insurance company. The list of things to do never ends.
I feel a little anxious but mostly I am just tired. Tired of running around the track and I want to just escape back to DIsney for a while. Hopefully though all will go well and we can enjoy the summer with a little return of normalcy.
Thanks to Suzette and Sylvia for their help entertaining the kids this weekend. I almost was at a loss of what to do but luckily there was a lot of unattended to work around the house and lots of laundry to put away. Luke had a fabulous time bowling, eating at McDonald's, visiting Stephen and going to the park.
Date Night? What is that anyway. We definately will have to fit that in especially if we are only seeing each other maybe on the weekends for 6-8 weeks. Could get lonely huh?
Anyway, Luke sends his love and his laughter and smile and hopes to see you all soon. As I have said a million times, there is no gift that Luke wants or craves as much as visits and time from his favorite people. Every day he asks "How are we going to See Today?" If no one, he cries and cries. He loves you all and needs your attention to thrive.
Today Luke reminded me once again of how important and innocent life is from the eyes of a child. He was so excited that they are going to be celebrating the 100th day of school tomorrow with Pizza. Ladies and Gentlemen, it doesn't get much better than that!
Love Nicole
Saturday, March 27, 2004 5:50 AM CST
Yesterday I spoke with Dr. Yock, who is the associate of Dr. Tarbell at Mass General. Luke has been accepted as a candidate for Proton Radiation Therapy. I feel so excited as though he just got accepted to an Ivy League College. Weird huh?
First things first, during their Wednesday multi-discipline meeting, they were concerned about the very large size of Luke's cysts about his tumor and the pressure they are putting on the brain etc. In addition, they felt that if there was a safe way to drain them, it would minimize their area of exposure as well as give them a clearer insight to the tumor sight. The neurosurgeon at Boston will be contacting Luke's neurosurgeon at CHOP to discuss this option. If it can safely and I underscore safely be done, I am all for it. Those darn cysts always made me nuts to think that they were just growing away up there without any concern.
After we hear what the outcome of that conversation and the final decision on drainage, we can move forward with this treatment. I am very very confident in these doctors in Boston, and impressed with the way that they are constantly working with a multi-discipline approach so all the involved parties have a say and know what is going on. Not to mention, so far the doctors have always phoned me directly to discuss the information. Very impressed.
Boston also feels that radiation is the best choice at this juncture for Luke. HOwever, they preface it by saying that although not expected, if the cyst drainage would improve his vision, they would delay the radiation.
All in all, I feel we are moving in the right direction. We are trying to maximize our scope of information and get the best people involved to make a good decision. I don't know if I ever will feel we can make a great decision given what we are deciding, but all this information and opinions is certainly helping.
Last night was a quite night. Luke slept over at my sisters for his first sleep-over. He called me 3 times over the course of about 5 hours until he fell asleep. He was afraid. He was scared. He wanted his mommy to be with him. Truthfully, it was hard for me too. The house was too quiet. And, as I tried to fall alseep, I felt sad and uneasy that my little man was not down the hall. That at any moment I couldn't crawl into bed with him, smell his hair and know that tonight he was okay. I don't think that will ever change for me because as crazy as Luke can be and as high throttle as he runs, I will always need him probably more than he needs me!
Nicole
Tuesday, March 23, 2004 6:44 AM CST
Well, I cannot say that I am so happy I could burst after yesterday's meeting. But, I will say that I am a bit relieved. We met with the radiation oncologists and learned alot about how the process works and how they would have to tackle Luke's tumor, including the 3 cysts around his tumor.
We learned that he would definately have cognitive deficits. He would drop IQ points probably at a rate of 4-5 points a year behind his peers up to a certain plateau. We learned that he would have limited if any short term memory and a difficulty processing of new information. FOr a mom of a very smart little man - it breaks my heart to think that Luke will not be able to maximize his God-given intelligence. But, God will take care of this in other ways I am sure.
We also learned that there almost no chance of stroke or bleed, however because radiation can thicken the arterial walls it can put him at risk for strokes later on and already gives him a disadvantage. No smoking and low cholesterol diet will be important. Also, there is a high risk of damage to the pituitary and hypothalamus functions which will most probably affect his hormones, including growth hormones, thyroid stimulating hormone, hormones that control your water levels and diabetic issues. They hope that they can limit damage to the areas that would include impulse & behavioral issues as well as obesity.
On the flip side, they do feel that there is an 80% chance they can stop the tumor from growing for some time affording us life, although different, with Luke. The do feel confident that they can save the remaining vision in his right eye. There is a small percentage of chance of rare affects including necrosis which would kill normal healthy brain cells causing irreversible damages, severe damage to the optic chiasm that would make him blind and formation of malignant brain tumor from the radiation and more. This seems minimal given the statistical percentages but we have been in those minor percentages: we have been the parents of a child who develops a brain tumor with no family history, we have been in the small percentage of the parents of a cancer child who developed an allergic reaction to Carboplatin and failed desensitization. ANd, we have been in the small percentage of those children who have no positive reaction to 3 different chemotherapy protocols after 2 years of continuous treatment.
Have I decided what to do??? NO. But, I am starting to realize that despite the odds, despite the disadvantages, despite the bad v. bad, Luke does not have a good track record with chemo agents especially after trying 3 various treatment protocols which have the greatest record of success. To save Luke, we may need to take the disadvantages.
I sent up all the info to Boston yesterday to see if Luke is a candidate for Proton Radiation. All things being equal and provided he is accepted, I would rather the Proton radiation approach. However, it would upheavel our lives. Luke and I would have to move to Boston for 6 weeks, get temporary housing, go for radiation every day miles away from Alexis & Isabella & John. John would have to continue to work. We would have to find coverage and care for the girls and last, but still important to the life of a 5 year old, he may miss his Preschool Graduation of most of his summer. If not, University of Penn would allow us to commute but it too would be an upheavel.
Still after all that - I cannot face the world without Luke in it and missing one more smile on his face. I am not sure how much care he would need or what special needs would need to be addressed at school, especially because the affects are long term.
So today as we embark on another day and I sometimes want to rush the week away because I have too many appointments and too much to do, I remember that Luke, although unaware, may not have all those days to give away. So it is important to appreciate each one we have even if we are busy and crazy and caught up in things we do not want to do.
Love to all Nicole
Saturday, March 20, 2004 6:33 PM CST
I am refocused in my desire to press forward to support Luke and rally to find the best treatment for him. I thank all of you, God's angels, who have been working with your prayers and love, those of you who come to clean my house and bring me food, those of you who send me all your love and prayers and words of wisdom and personal stories of tragedy and triumph. Thank you all of God's angels for helping redirect my energies and refocus my thoughts.
I know that God will direct our steps and provide us the guidance we need to make the right decision. I am trying to remember to put it on him and not the burden on me. I am trying to remember to trust in God and his plan and not with our earthly fears. I am trying to remind myself of how far we have come and how strong Luke has been and continues to be.
And today, when I am outwardly trying to be supermom and inwardly breaking and hurting, I received the most outpouring from all of you. God knew that I needed you all and he sent you just in time.
I made lots of progress on Friday spending most of the day on the phone. I spoke with Nancy Tarbell's office and we are trying to get all the documentation to her office by Tuesday so that Luke can be reviewed for eligibility for Proton Radiation. We are meeting with Dr. Shue's office Monday for our radiation consult so we can have our questions answered and get all the specifics good, bad or procedural. I spoke with a Dr. Bouffet in Toronto about a new drug he is using and finding success with for which Luke may be a candidate. I am making a list of questions, for which a very good friend was patient with me and helpful in guiding me through. I am calling and emailing and canvasing the area of neuro-oncology to leave no stone unturned.
I am re-educating myself and re-visiting previously found information.
Luke started the steroids today and we will see if those help make a difference in his vision.
Thank you again for your love and support. Although it is hard for me to ever admit I need help, I am glad when all of you come forward anyway. I am reminded that it is okay to take a breath. It is okay to share the load. It is okay to be human.
Love Nicole
Friday, March 19, 2004 7:12 AM CST
Today I do not feel like writing. I do not even feel like getting out of bed. Yesterday was one of the second worst day of my life but I can tell there are more ahead.
Luke's MRI was stable and on the surface that sounds great. Oh no, not great. Because his vision has rapidly declined since his last visit only 6 weeks ago. That symptamatic decline is almost more a tell tale than the MRI because things happening microscopically can affect the optic nerves but not appear on the MRI -- yet. Also, despite an increase in accuity of his vision (no 20/25), he also has more optic pallor on the nerve showing increased pressure and there could be more loss. He is down to only on partial remaining field in the right eye.
Chemo is abandoned and now we are faced with a choice of radiation. The neuro-onc is really pressing for this because his thinks we have little time to play around. We meet with the radio-onc on Monday. Of course we have to wait to get all the info but we are faced with a decision of wrong and wrong. Damned if you do, Damned if you don't.
If we choose not to radiate, we could opt for experimental drugs which of course our insurance will not pay for. THese may or may not work. If not, we could opt to do nothing and watch Luke decline until ultimately the tumor would take his vision fully and then most probably his life.
If we choose to radiate, we are radiating a 5 year old -- taking away all his learning ability. We are radiating a tumor that houses the main artery -- stroke is very possible. We are radiating a brain full of life and intelligence and probably being left with a child that will never function normally or live independent. We are radiating and running a high risk of another tumor from radiation. We are radiating trying to protect certain structures at the expense of others and the long term effects are unknown even to the most educated because no one holds the crystal ball.
What would you do??? I do not have a clue. Is quality better than quanity or do you do whatever you must to keep Luke here? Would he want that if he could comprehend?
MEanwhile, all Luke wants to do is run around and celebrate that he doesn't have to take anymore chemo. I had a killer migraine yesterday and even today I want to stay in bed and cry. Can you say depression?
If we even choose radiation, can I put him and myself through 5 days a week of radiation in Philly for 6 weeks? Can I have him sedated 5 times a week for 6 weeks so that we can blast his head with harmful cancer causing cognitive altering, brain damaging radiation and then go about the rest of my life for 6 weeks. I do not know if I am strong enough any more. Sounds selfish -- maybe it is but I love Luke more than life -- even when he screams at me and puts his fists up -- I would miss even that. He has been put through so much and my gut is just saying this is so wrong. I want more time. I want him to be 10 and for us to decide. It would be easier. He could read by then, do multiplication by then, have a growing knowledge by then. Now, he is on the threshhold of amazing things and we are faced with choosing to take that away.
All of you who have experienced this -- please let me know. I know beautiful Marshall has been through it and he is amazing. But, I forget what area his was etc. I am so lost.
Luke is feeling great however. He is full of spunk, excited he has no school today (sorry Mrs. Fedor) and that he can sit and have shlump day.
Meanwhile, I am going to canvas the internet for more information on alternatives and other options - even crazy witch doctors if I find them.
Love to all. Kick up the prayers a notch will you please.
Nicole
Tuesday, March 16, 2004 4:07 PM CST
Greetings from the cold and snowy highlands of PA. We returned from sunny Florida just in time for Mother Nature's Snowy surprise. Lucky us!!
We had a beautiful amazing week in Florida with lots of fun and activities. Give Kids the World was AMAZING and so was the amazing pool with sand on the bottom at the Yacht Club in Disney. One of our favorite spots!!
There is so much to share and so many pictures to post -- I will not have time for all of them immediately but they will be coming soon. We did so much I do not know where to begin: meeting Mayor Clayton and enjoying all the amenities at GKTW, swimming in the heated pool, carousel rides, train rides, meeting Spiderman, a book full of Disney autographs: Rafiki, Cinderella, Timon, Wendell, Daisy Duck, Pinocchio, Ghepetto, Captain Hook & Mr. Smee and on and on and on; meeting up with Melanie & Jim & Lauren when we arrived was a great treat; horse drawn carriage rides, riding horseback, the group from Lehigh University, Ice Cream sundaes from 7:30 a.m till 10:00 pm., walks on the boardwalk, surrey rides, Illuminations of Earth firework & laser presentation, Its a Small WOrld, the Hall of Presidents (one of Luke's favorites!!), Buzz Lightyear ride, Carousel of Progress (another Luke favorite), Sea World & Shamu and Baby Shamu, the Lost Atlantis ride (Luke hated this!! too scary), One Fish Two Fish, eating in Norway, too many hotdogs & hamburgers, Luke's pictures with the Adventure Heroes, Bella vomiting on Mommy, watching the fireworks from the hot-tub, the boat rides, the violinist in Canada who had Luke stunned, pictures with Nemo & Marlin, pins, pins and more pins, Castle of Miracles, Pictures with Mickey & Minnie, visits from Mickey Minnie, Goofy, Pluto & Mary Poppins, private meeting with Barney & Professor Peek-a-Boo, Toy Shopping, chip & tuna escapades, breakdowns, crying, laughing, moaning, smiling, running, hopping, joy, fun & wishes upon stars.
Luke wants to live in Disney -- we convinced him that we would try to come down every year if we could or at least every other year. Life came to a screaching reminder this morning as we headed off for Luke's MRI but despite the outcome on Thursday, we renewed our family, restored our souls and are once again focused on fighting this tumor and enjoying Luke and all his crazy idiosyncracies and hysterical breakdowns for as long as we are priveleged to be a part of it.
Thanks again for all our wonderful friends and family.
Nicole
Tuesday, March 16, 2004 4:07 PM CST
Greetings from the cold and snowy highlands of PA. We returned from sunny Florida just in time for Mother Nature's Snowy surprise. Lucky us!!
We had a beautiful amazing week in Florida with lots of fun and activities. Give Kids the World was AMAZING and so was the amazing pool with sand on the bottom at the Yacht Club in Disney. One of our favorite spots!!
There is so much to share and so many pictures to post -- I will not have time for all of them immediately but they will be coming soon. We did so much I do not know where to begin: meeting Mayor Clayton and enjoying all the amenities at GKTW, swimming in the heated pool, carousel rides, train rides, meeting Spiderman, a book full of Disney autographs: Rafiki, Cinderella, Timon, Wendell, Daisy Duck, Pinocchio, Ghepetto, Captain Hook & Mr. Smee and on and on and on; meeting up with Melanie & Jim & Lauren when we arrived was a great treat; horse drawn carriage rides, riding horseback, the group from Lehigh University, Ice Cream sundaes from 7:30 a.m till 10:00 pm., walks on the boardwalk, surrey rides, Illuminations of Earth firework & laser presentation, Its a Small WOrld, the Hall of Presidents (one of Luke's favorites!!), Buzz Lightyear ride, Carousel of Progress (another Luke favorite), Sea World & Shamu and Baby Shamu, the Lost Atlantis ride (Luke hated this!! too scary), One Fish Two Fish, eating in Norway, too many hotdogs & hamburgers, Luke's pictures with the Adventure Heroes, Bella vomiting on Mommy, watching the fireworks from the hot-tub, the boat rides, the violinist in Canada who had Luke stunned, pictures with Nemo & Marlin, pins, pins and more pins, Castle of Miracles, Pictures with Mickey & Minnie, visits from Mickey Minnie, Goofy, Pluto & Mary Poppins, private meeting with Barney & Professor Peek-a-Boo, Toy Shopping, chip & tuna escapades, breakdowns, crying, laughing, moaning, smiling, running, hopping, joy, fun & wishes upon stars.
Luke wants to live in Disney -- we convinced him that we would try to come down every year if we could or at least every other year. Life came to a screaching reminder this morning as we headed off for Luke's MRI but despite the outcome on Thursday, we renewed our family, restored our souls and are once again focused on fighting this tumor and enjoying Luke and all his crazy idiosyncracies and hysterical breakdowns for as long as we are priveleged to be a part of it.
Thanks again for all our wonderful friends and family.
Nicole
Tuesday, March 16, 2004 4:07 PM CST
Greetings from the cold and snowy highlands of PA. We returned from sunny Florida just in time for Mother Nature's Snowy surprise. Lucky us!!
We had a beautiful amazing week in Florida with lots of fun and activities. Give Kids the World was AMAZING and so was the amazing pool with sand on the bottom at the Yacht Club in Disney. One of our favorite spots!!
There is so much to share and so many pictures to post -- I will not have time for all of them immediately but they will be coming soon. We did so much I do not know where to begin: meeting Mayor Clayton and enjoying all the amenities at GKTW, swimming in the heated pool, carousel rides, train rides, meeting Spiderman, a book full of Disney autographs: Rafiki, Cinderella, Timon, Wendell, Daisy Duck, Pinocchio, Ghepetto, Captain Hook & Mr. Smee and on and on and on; meeting up with Melanie & Jim & Lauren when we arrived was a great treat; horse drawn carriage rides, riding horseback, the group from Lehigh University, Ice Cream sundaes from 7:30 a.m till 10:00 pm., walks on the boardwalk, surrey rides, Illuminations of Earth firework & laser presentation, Its a Small WOrld, the Hall of Presidents (one of Luke's favorites!!), Buzz Lightyear ride, Carousel of Progress (another Luke favorite), Sea World & Shamu and Baby Shamu, the Lost Atlantis ride (Luke hated this!! too scary), One Fish Two Fish, eating in Norway, too many hotdogs & hamburgers, Luke's pictures with the Adventure Heroes, Bella vomiting on Mommy, watching the fireworks from the hot-tub, the boat rides, the violinist in Canada who had Luke stunned, pictures with Nemo & Marlin, pins, pins and more pins, Castle of Miracles, Pictures with Mickey & Minnie, visits from Mickey Minnie, Goofy, Pluto & Mary Poppins, private meeting with Barney & Professor Peek-a-Boo, Toy Shopping, chip & tuna escapades, breakdowns, crying, laughing, moaning, smiling, running, hopping, joy, fun & wishes upon stars.
Luke wants to live in Disney -- we convinced him that we would try to come down every year if we could or at least every other year. Life came to a screaching reminder this morning as we headed off for Luke's MRI but despite the outcome on Thursday, we renewed our family, restored our souls and are once again focused on fighting this tumor and enjoying Luke and all his crazy idiosyncracies and hysterical breakdowns for as long as we are priveleged to be a part of it.
Thanks again for all our wonderful friends and family.
Nicole
Saturday, March 6, 2004 11:01 AM CST
Since we are here are on the Eve of our grand trip we wanted to drop a quick note to all of our faithful readers so that you would not miss us too terribly next week.
And since he is the Big Cheese around here, I will let Luke write the message today and send his thoughts your way:
I will see you all when I get back. I will send you a nice big postcard. And, I will be back soon. I am going to see all the characters and do fun stuff and then when I come back I can tell you all about it.
And about the Limo, I am going to have a Limo ride and it is going to be so much fun all the way to the airport and then the airplane is going to pick me up and that is going to be real neat.
See you all soon.
So, out the mouth of babes -- We will think of you all and are hoping for a wonderful trip full of fun in the sun and no oops catastrophes!!
Luke & Nicole
Tuesday, March 2, 2004 7:25 AM CST
I am still recovering from the 8 hours in the car yesterday but I am a little in need of my therapeutic journal this morning.
Of course, Dr. Packer's meeting yesterday didn't reveal some magic potion for Luke or some miraculous good news that his tumor is curable or that this tumor will not ultimately kill him, but it did help shed some light on other avenues when the time comes.
There are some experimental agents which seem to be the best next approach for Luke. Some of the other more intense chemo regimes just do not seem to have the track record to make them the best choice for a body that has already endured almost 2 years of constant chemotherapy. Although we are amazed how well Luke has tolerated his chemos and still put a smile on his face and a bounce in his step, we do not know how long this can hold out.
Although I knew all the downsides for LUke's condition, yesterday's meeting was a harsh reminder that the reality is that Luke will die from a brain tumor. Of course, I haven't given up hope of a miracle or some new amazing drug down the line, but it appears that we have been and continue to only be buying time, a little at a time, month by month, maybe even day by day.
It is a shame. It is a horrible tragedy. It is unfair. Why me? But, why anyone. We will continue to pursue all avenues of treatment for Luke, we will continue to fight this till we cannot fight anymore, and we will continue to pray for divine intervention. Amazingly, Luke said to me yesterday as we practically lived in the car for the ride down to DC -- "Mommy, isn't is great we get to have a Mommy & Luke Day today". Well, the highlight of the day was McDonalds and Luke's assignment to answer the phones at the Neurology Department of Children's National.
I am keeping a chin up -- I am looking forward with great anticipation to our upcoming trip, and while I sit at the base of the castle, I will surely make a wish on a falling star, in the land of magic and wonder, that Luke wins his fight -- for I know that this world will be so much less of a place without Luke in it.
God Bless Us All and Let's Keep Fighting the Fight!
Nicole
PS: Volunteers still needed for September and we need to connect with our community and all those people who can help financially and socially in their positions to move this project forward and the campaign for children with cancer ever forward so that we can provide the services as well as find the resources these families need. This is my calling.
Thursday, February 26, 2004 6:14 AM CST
Well, before you call out the search party -- we are here and alive but Mommy has been finding it difficult to carve out enough time to sit down and write our weekly journal.
THON was amazing. The electricity and the sheer number of students and people would take your breath away. I held back tears at every turn and with the hourly stretch dance (which was very cool by the way -- someone was quite creative), I just welled up with tears at the sentiments and the excitement of these students doing their part to help children with cancer. If anyone every thought that college students do nothing but party --- well I guess you were right. But this party raised over $3.5 million dollars and provided an amazing glimpse into our college students: selfless, loving, caring, strong, purely amazing. I am blessed and fortunate not that Luke has cancer, but that his cancer and our journey has provided us with the opportunity to meet some of the most amazing people and to have the fortune to experience some of the most amazing experiences. Thank all of you and especially the dancers, for working towards a cure through your 48 hours.
Penn State for 48, we Believe!!
I have attached some pictures, but it cannot possibly capture all the amazing moments. Jacquie and Marta were our two (2) dancers from Penn State Lehigh Valley and they are amazing women. Thanks to all the dancers who tolerated with love Luke's unrelenting water pistol battles until they were soaking wet and thanks to everyone who carried Luke up on their shoulders so he could "win the battle" in the bleachers!!
Luke has been feeling well despite a vomit episode on Saturday morning 2 am. Chemo on Friday was uneventful and Luke's counts were very good. We are at our countdown now. One more week. One more chemo infusion. DISNEY HERE WE COME!!!
Thanks also to all of you who have doted on the kids with pre-Disney gear, especially Sylvia, the Gogel family and Mrs. Krall and Mrs. D'Imperio. Thanks to everyone who keeps us fighting with their encouragement and love, and thanks to my job for putting up with me when I do not have enough energy to give 110%.
As always, we ask that you keep a few friends of ours in your prayers for extra strength as they fight their own battles: Mrs. Krall, Caitlyn, Stephen, Sean, Aaron, Marshall, Brian, Ryan, Megan.
PS: Don't forget that the Pediatric Oncology Support Group of the Lehigh Valley is going to be hosting the First Annual Childhood Cancer Awareness Day on September 19, 2004 from 12-6 pm at the Holiday Inn, Fogelsville. We need lots of volunteers, chinese auction baskets, children crafts, etc. If you or your company can help, please let us know!
Love & Prayers Always,
Nicole
Thursday, February 26, 2004 6:14 AM CST
Well, before you call out the search party -- we are here and alive but Mommy has been finding it difficult to carve out enough time to sit down and write our weekly journal.
THON was amazing. The electricity and the sheer number of students and people would take your breath away. I held back tears at every turn and with the hourly stretch dance (which was very cool by the way -- someone was quite creative), I just welled up with tears at the sentiments and the excitement of these students doing their part to help children with cancer. If anyone every thought that college students do nothing but party --- well I guess you were right. But this party raised over $3.5 million dollars and provided an amazing glimpse into our college students: selfless, loving, caring, strong, purely amazing. I am blessed and fortunate not that Luke has cancer, but that his cancer and our journey has provided us with the opportunity to meet some of the most amazing people and to have the fortune to experience some of the most amazing experiences. Thank all of you and especially the dancers, for working towards a cure through your 48 hours.
Penn State for 48, we Believe!!
I have attached some pictures, but it cannot possibly capture all the amazing moments. Jacquie and Marta were our two (2) dancers from Penn State Lehigh Valley and they are amazing women. Thanks to all the dancers who tolerated with love Luke's unrelenting water pistol battles until they were soaking wet and thanks to everyone who carried Luke up on their shoulders so he could "win the battle" in the bleachers!!
Luke has been feeling well despite a vomit episode on Saturday morning 2 am. Chemo on Friday was uneventful and Luke's counts were very good. We are at our countdown now. One more week. One more chemo infusion. DISNEY HERE WE COME!!!
Thanks also to all of you who have doted on the kids with pre-Disney gear, especially Sylvia, the Gogel family and Mrs. Krall and Mrs. D'Imperio. Thanks to everyone who keeps us fighting with their encouragement and love, and thanks to my job for putting up with me when I do not have enough energy to give 110%.
As always, we ask that you keep a few friends of ours in your prayers for extra strength as they fight their own battles: Mrs. Krall, Caitlyn, Stephen, Sean, Aaron, Marshall, Brian, Ryan, Megan.
PS: Don't forget that the Pediatric Oncology Support Group of the Lehigh Valley is going to be hosting the First Annual Childhood Cancer Awareness Day on September 19, 2004 from 12-6 pm at the Holiday Inn, Fogelsville. We need lots of volunteers, chinese auction baskets, children crafts, etc. If you or your company can help, please let us know!
Love & Prayers Always,
Nicole
Sunday, February 15, 2004 5:39 PM CST
Luke has been amazing all week. Monday and Tuesday were really bad nausea and vomiting days from the Chemo. This was the worst it has been for a long time and I needed even extra meds. But luckily he was better on Wednesday with only a little gagging at breakfast and then perfect the rest of the week. He has been more tired than usual which is to be expected but his behavior has been so wonderful. He is really growing up before our eyes.
On Valentine's Day my kids and their Daddy spoiled Mommy and then we jumped right into work on our garage. As Daddy ran back and forth to Home Depot, he found a band playing there and they were playing Luke's favorite song - Give Me the Beat Boys. I returned to Home Depot later to exchange something with Luke in tow and we spent the next 1 1/2 hours sitting listening to the band play. Luke was mesmerized. Music really touches him deep and he is so captured by it.
If any of you have had the pleasure of listening to Luke sing -- you can vouch that it is amazing: he sings Tarzan's song better than Phil Collins, loves the Hercules song, We are the Champions by Queen (Luke was born under Queen - another story) and Give me the Beat Boys. Lets not forget his ongoing other favorite - Uncle Cracker - "Follow Me".
All and all we are having a lovely week and are grateful for all the continued blessings. We made some new friends lately (Kristan & Brian) and are blessed to have everyone surrounding us with love and support.
Please continue to pray for Stephen (and his roomate Sean), Ryan & Tyler our little friends who need tonsilectomies, our southern friend Marshall, Brian who is neutropenic, Andy, Ryan who was born with Hypoplastic Left Heart Syndrome, and all those who are in need of extra prayers at this time.
Best to all, Nicole PS: Keep in mind that Penn State's Dance Marathon is this coming weekend -- their ongoing commitment to raising money for the Four Diamonds Fund which helps families and children with cancer.
Monday, February 9, 2004 6:16 AM CST
We are now in the home stretch. Only 2 more chemo administrations today and we are done for this week - then just 2 more Vincristine infusions before DISNEY!! I think I am more excited than the kids. Yesterday Luke asked if we would have snow in Disney and I said I sure hope not. To which Luke replied, then I do not want to go to Disney. ARE YOU CRAZY CHILD?
He confessed that he hasn't had any swim lessons lately and doesn't think he will be able to swim so he would rather have snow. Well, I finally convinced him that in deed we do not want snow just lots of sunny weather and we will take care of the swimming at that point. I need to get him back into lessons but I do not think they start till April. Note to self.
FOrtunately, Luke was able to attend his friend's birthday party too this weekend for a little bit. Although he couldn't eat the food or cake, I was so happy he was able to play and interact with his friends. Aside from people visiting us, nothing makes Luke happier than playdates and visiting friends.
Our appointments last week brought good news. Luke's vision remains very stable and although we need the MRI to really determine what, if anything, the chemo is doing for him or the tumor is doing to him, we are happy at least to know that his vision is consistent and the tumor seems to not be progressing at least in that area.
Good planning has made it such that our next MRI is the day after we return from Disney so we can enjoy the entire week without any distration.
We are gearing up to head up to Penn State in 2 weeks for the Dance Marathon. Luke has a date at 3 a.m. at the Diner for some grilled stickeys. John has advised me that he will be sleeping at that time with Lex. Luke and I are use to getting up in the middle of the night for medicine, why not for something good!!
Thanks to all of you for your guestbook remarks - LUke LOVES reading them!
PS: To those of you who heard about my car adventure in Philly, I am happy to report that my car has safely returned from the dealer $150 later. Such is the nature of life.
Love to all Nicole
Monday, February 2, 2004 8:48 PM CST
Luke has been feeling great. Honestly, I think it has been 3 weeks since he complained of a headache or consistent nausea. I pray that this is a sign that the chemo is working to stunt this tumor and his relief of symptoms is an indication that the pressure from the tumor has been alleviated a bit.
We are gearing up to start Cycle #2 of chemo this Friday which in case anyone forgot begins our marathon of 5 days of chemo every 6 hours. Forget a good night sleep for Luke & Mommy we are chemo junkies. I pray for Tuesday when it is all over and then Luke only has 4 more weeks of chemo until DISNEY!! Yes, incase you cannot tell I am excited and look as this trip as a rejuvination for my family. An expression of normalcy. A celebration of all that we have overcome, all that Luke has endured and all that we have accomplished along our journey.
This Thursday Luke & I head down to Philly to check on his vision with Dr. Liu and followup with the neuro-oncologist about the treatment. At this point, it is just a regrouping -- even if things are worsening, we will continue the course to give it a full 3 months to start working. But, since the headaches have alleviated - I am optimistic.
As for Luke's behavior, he is much better but very emotional. Whenever he is disciplined or I try to explain to him something that he has done that was not nice, etc. -- he right away retailiates with "I know, I am stupid, I am a jerk etc." It pains me to hear these words come from his mouth and I try to tell him that I never call him those things or want him to feel that way. He is still learning and needs to just try harder next time to do better and be nicer. Also, on the flip side, he will just cry and scream outrageously and that too is painful because I want him to try to find better ways to deal with his frustrations and disappointments. It is very hard as a parent to teach children as strong willed as Luke and even harder when you are reminded of their plot in life. But, I think I am doing okay and I try to continue to pray for wisdom and patience. John reminded me today that even though I think God is not answering my prayers because I do not have more patience, he is actually just giving me more opportunies to practice the patience when they act up. Good point I guess.
We press on and thank you all for your love and prayers. More later.
Nicole
Tuesday, January 27, 2004 7:15 AM CST
Well, we had to reschedule Dr. Packer's appointment for yesterday given this lovely weather, it just wasn't worth the risk driving into snow/ice & sleet. We are rescheduled for March 1 and I will update you all at that time what his thoughts are for Luke.
Luke continues to do well with his new protocol. His nausea has subsided a lot and he is feeling pretty well lately. (Hold on while I knock on some wood!) We only hope that the chemo is actually working and we have finally found a drug combo that can help relieve some pressure. Only time will tell and the MRI in March.
WIth this crazy weather - Disney seems like a paradise awaiting us. I am trying to organize my house while we are stuck at home and catch up on letter writing and thank you cards and the like. We have a lot to do with the Support Group currently as we are preparing for our 1st Annual Childhood Cancer Awareness Day in September and we need lots of help writing letters and organizing fun events for the kids etc.
Isabella & Alexis are doing well too and although Luke still has his outbursts which throw the homeostatis off a bit, we are working around it knowing that probably he has limited control over this.
Oh, almost forgot to report - Luke's visit to the endocrinologist proved good. ALl his hormone levels seem to be fine and his pituitary seems to be functioning perfectly inspite of the tumor. We are glad for this and the only other side effect besides the emotional up and down, seems to be the possible hypothalamic obesity. Yes, Luke has gained a significant amount of weight over the last year and a half, but he looks great and is still within normal range.
Thanks again for all the continued prayers and support. Lord knows sometimes I need it more than ever to keep an even temper and patience and I continue to pray for wisdom to make the appropriate decisions for Luke and our family.
Lastly, please also keep my friend Sylvia and her family in your prayers too as her brother was in a serious accident and has had significant trauma. Also, please pray for our friend Andy who suffers with some sort of genetic problem that causes aneurysms throughout his body, as well as the 2 new families we know about that have just received a diagnosis of leukemia for their small 3-year old children.
Nicole
Wednesday, January 21, 2004 5:55 PM CST
Believe it or not things have calmed down a bit. Luke has not complained of nausea for 2 days now, and today he actually was very well behaved without previous mood swings. He has his next round of Vincristine on Friday after he sees the Endocrinologist in the morning. He still is having joint pain from the Vincristine but it seems to have subsided a little bit.
We are still very excited about Disney in March and Luke and Alexis have already packed their suitcases in anticipation. Luke is enjoying preschool very much and he is learning a lot. Alexis amazingly already can write her own name!
Things are at a good stage for the moment but we still only take it day by day because at any point, life can be upheaveled.
It has been hanging on my refrigerator for the past year now but it took last weeks work retreat to reinforce it - Life is only 1% of what happens to you and 99% of how you deal with it. So, we continue to try to find the silver lining.
And, in case someone Moves my Cheese again, I will try to keep my running shoes tied around my neck so I am not as caught off guard. I guess I should take a lesson from Luke once again, he never stops running!! Brain Tumor BEWARE.
Thanks for all your continued support and prayers. Nicole
Tuesday, January 13, 2004 12:36 AM CST
What is new here ....hmmm. Well first off, Luke received his Vincristine infusion on Friday and did well with that. He is now on his off week, but still having a lot of headaches and nausea. Added to our list now, he has been complaining of arm pain, usually associated with a headache. Could this be the joint pain from the Vincristine? It is bad enough remembering when he last pooped, now a new benefit of Vincristine -- all around pain. All in all, he is handling it like a trooper. Minimal complaints and he takes it all in stride. Sure hasn't slowed him down -- he is moving 200 mph all the time.
I am taking Luke down to Dr. Packer in Washington DC at the end of the month to get him in the loop at this point and have some other eyes working on Luke's treatment. We have follow-up vision tests to see how his remaining vision in the right eye is handling the increasing pressure from the tumor. Endo visit on the 23rd and neuro-oncology followup after all that. Next MRI is 3/16 (after Disney!!!)
Otherwise, things have just been busy with getting in a new routine now as we have had to move some lessons etc. to accomodate his new protocol as well as provide down time from our normally busy schedule.
Luke & Lexi (and Mommy) are anxiously awaiting our family trip to Disney in March. We hope Luke is exceptionally healthy at that time and we can just go and enjoy the fun of youth and the special memories we will be creating.
We had a wonderful holiday inspite of everything and although I am a bit depressed by the season of cold, I know that SPring is around the corner and with it hopefully, reasons to celebrate.
Nicole
Friday, January 2, 2004 8:04 AM CST
We are at Day 7 and so far so good. Luke has had daily nausea but that has become the new norm anyway since September when the tumor began growing. Of course I long for that to stop as some cosmic indication that this new chemo is working but, for sanity reasons I just take it one day at a time.
Luke had a super Christmas and thanks to his friend Tyler and our friends the Gaspars, we all had a wonderful New Year celebration. My hopes for the new year are simple: that Luke enjoys another wonderful year of his life, that this chemo finally works and kicks this tumors "butt" and that life over all returns to some semblance of normal.
WIth the new year comes lots of new work ahead. The Pediatric Oncology Support Group of the LV (www.cancersupportgroup.org) is planning a Childhood Cancer Awareness Day and we need to get busy writing letters and making all the preparations; need to get the kids registered for school again in the fall (Luke will start Kindergarten), plans for Disney & Camp Sunshine and more.
For those of you local - REMINDER that Tuesday 1/6 is our fundraiser at Friendly's on MacArthur Road. A portion of the evening proceeds (from 5:00 pm - 8:00 pm) will benefit the Pediatric Oncology Support Group of the LV so we hope you all will come out.
Thanks again and we will keep you posted on Luke's progress.
Saturday, December 27, 2003 7:43 AM CST
Well it seems we made it through the first 3 chemos - and did really well at the 1:00 a.m. dose although he was wide awake after it and I had to spend the next hour plus talking with him about things I did when I was little. It was a great quality time but I was already waking up every hour paranoid I would oversleep over the next dose that I am a little tired this morning. But no pain no gain.
Otherwise, he is feeling well and has not complained of any nausea (God Bless Zofran!!). He had a great Christmas that lasted from Sunday till Friday. He got a lot of nice things and much needed clothing. He said this was his best Christmas ever and that made it all worthwhile. Thanks to everyone who made it extra special -- it really means a lot!!
More later but I just wanted to fill everyone in on how round 1 is progressing. We are staying home till this first cycle is over so we can focus on the dosing and Luke's reactions. Good time to spend it anyway -- too cold outside!!
Nicole
Saturday, December 20, 2003 8:04 AM CST
Now that the news had settled in a bit, I have begun to refocus my thoughts and efforts in their appropriate direction. I thank all of our friends and family for their tremendous out-pouring of support during this time.
In addition, a very special thanks to Dr. Leo who may not have realized what an impact his words were making at the time he spoke them, but who really jump started my refocus and redirection.
Luke is still here with me and he is still fighting and doing well. I am going to keep up my end and keep fighting right along side him -- through the highs and lows and do whatever it takes to turn this around for him.
Sometimes in life we are handed things that we do not understand and now matter how we try we cannot make sense of it. This is one of those times for us but we will try to put the burden on God and we know he will give us the strength to get through each day, one by one.
Luke has taught me, among other things, to enjoy the moments we have in life. Sometimes I get annoyed at his endless energy, as I sit tired with me head pounding and the noise level rising. But as I write this, it sounds all too selfish of me. He is a child loving life, enjoying the moments as we all should do. When we grow into an adult some of us forget that joy and get caught up in the whats to do and where I need to go and laundry, dishes, etc. Luke reminds me that it is okay to be crazy and goofy and run around the house in your underwear pretending to be Tarzan, that it is okay to eat tuna fish sandwich for breakfast and that it is okay to go to sleep without brushing your teeth (once in a while at least).
I have become a person of rules and guidelines full of control for it is the only way for me to control the outcome and the destination. But life is more than that and this journey keeps reminding me of that even when my stubbornness makes me forget. It is not the destination but the journey that takes you there that matters. Thank you Luke for teaching your dear ol Mom the lessons of life. I hope that you have many more to teach me in the years to come but that they are less painful to learn.
All my love Lukey Baby!!
Mommy
Thursday, December 18, 2003 7:04 PM CST
It is with heavy heart and tears on the keyboard that I pen this journal message. Today we found out that Luke's tumor has had significant growth over the last 3 months.
The size of the tumor has grown as well as one of the associated cysts which is putting pressure primarily on the third ventricle. Although somewhat stable at this time, his vision is in extreme jeopardy and of course the thought of him going blind is very very sorrowful for us since so much of Luke's love of life is what he sees.
But, the thought of losing Luke completely to this terrible disease is more worrisome for dear ol Mommy right now. We are starting another chemo regime immediately: PTCV: procarbazine, thioguanine, CCNU and Vincristine.
Our world is spinning and we know that all we can do is take this one day at a time and try to keep doing the best we can. I am planning on searching for as much info on what things we can do --- we are trying not to look at this as a last ditch effort, but I am trying to keep all my options open and learn as much as we can about new treatments or alternative options.
It is very hard during the holidays when one is suppose to be Merry and all I want to do is hide under the covers and try to re-awake. On the flip side, all I want to do is be with Luke -- to absorb as much of him as I can because I feel he is slipping away from me.
For a split minute, I wish he had never been born, never been brought into the world, brought into the light, brought into our heart and then the prospect of being taken. When you have nothing, it is easy to lose things because you have nothing. When you have everything -- LUKE IS MY EVERYTHING -- and you could lose it, you just cannot imagine going on.
I am sorry to dump - but the reality is still very raw. Please even more so, keep us in your prayers and please God hold Luke tightly in your grip and keep him safe and well.
Nicole
Monday, December 8, 2003 10:10 PM CST
Luke will be officially 5 on Wednesday, December 10th. But, luckily despite all the snow and sleet and freezing temperatures, we were able to have his party on Saturday at the Suburban North Family YMCA and almost all of his party guests were able to make it.
Luke had a great time spending time with his friends and enjoying his RESCUE HEROES themed birthday complete with firehats (Thanks to the Whitehall Fire Department and Terry Deutsch!!) along with our own version of pin the tail on the donkey called "Pin the Ladder on the Firetruck".
After food, cake, gifts and the pinata, the kiddies headed over to the gym for relays races, basketball, soccer, freeze dancing and balance beam fun.
All in all, it was a fun day and Luke couldn't wait to get home to enjoy his new toys, of course!! Thanks to Aunt Suey for helping him assemble the Hot Wheels Course.
Luke has been feeling very well too. Not including the one complaint today, Luke has not complained of nausea for almost 7 days and has not had vomiting in as many. He goes for his blood work on Wednesday and then the MRI next Tuesday (12/16) with the results on Thursday (12/18). We are hoping for a really really amazing Christmas present!
A special thanks is necessary for all the wonderful "extended family" we have at Luke's Preschool - St. Stephen's in Whitehall, PA. They constantly go above and beyond to make life a little bit nicer for our family as well as supporting our efforts towards the Pediatric Oncology Support Group of the Lehigh Valley with its mission to help families of children with cancer in the Lehigh Valley. They coordinated a hoagie sale during December to raise money as well as the Loot for Luke. I hope they all know, as well as all our friends and family, how appreciative we are of all the support. I know on the surface, our family can seem quite normal and we are glad that for the most part Luke has been feeling well more than not. But, the truth is there is a lot of behind the scene anquish that takes place, the constant medicines, monitoring his nausea & vomiting, his intake and output, his behavioral issues and the appointments.
Sometimes, these get the best of even me -- a hard fact for me to admit, but true. And on those days, I wake up wishing I was someone else, living another life, worrying about a bumped knee or too many presents for Christmas. But, I remind myself and I will tell you all that this is bigger than just me or my family. It is about all those children and all their families who suffer, sometimes silently, with the pain that is this diagnosis. Who wait every day in fear and in anticipation - living MRI to MRI. For all of those families we pray for and offer our strength and support.
To all of you who have become more aware because of our family, and more connected to helping to raise awareness and finances to help those families, I thank you. I am just a mom who loves her son more than life and I am just trying to help move the system in the right direction. Thanks to all of you -- we are succeeding.
God Bless Nicole
Monday, December 1, 2003 4:08 PM CST
Round two trying to write this journal entry (Isabella somehow deleted the first try). Luke finished his 8th cycle of Temodar last Tuesday and has had vomiting on a daily basis since. But, we did expect this and have been combating it with Zofran and Tums.
Otherwise, we are all heatlhy and doing well but heard that there are bugs going around. Luke's birthday is coming up and he is quite excited. Meanwhile, Mommy is busy making life more difficult that it should be by personalizing all Luke's birthday stuff and party supplies.
Just on an aside I thought it was quite interesting listening to Luke the other day talking about his "condition" and thought I would relate the story: A woman at the store asked Luke if he was ready for Santa and what he has asked for. After running through his list, Luke told the lady that he was "sick" and sometimes Mom has to give him a liquid medicine and sometimes a hard pill. The liquid is called Zofran and the pill is Tums. But, today he was feeling good and was going to see Santa to give him his list.
Some conversations have no place in the mouth of a 4 year old, but I hope this entire experience will one day make us all stronger.
So before I close I will confess my only wish for Christmas -- a cure. Love to all. God Bless!
Nicole
Saturday, November 15, 2003 7:28 PM CST
Thank you everyone who came out to support our table at the Suburban North YMCA Craft Fair -- Luke loved meeting all his "website pals" and I appreciate all the support for our group.
LUke has been doing well. He is still experiencing GI stuff with bloating/belching and poop issues along with nausea but the vomiting has stopped. Of course he is to begin his 8th round of chemo next week so we may be starting all over again.
Otherwise, Luke is doing very well. He is active and happy. He loves school, complains about practicing his violin, started gymnastics classes and CANNOT wait for his birthday in December or his Rescue Heroes party.
Of course we worry about his outbursts and behavioral things but mostly we think Luke is just very smart and doesn't take authority very well. He has trouble understanding that parents and kids are not equals and one actually makes the rules the other must follow. EIther that or he just thinks it is he who makes those rules and us who should follow.
But, I love him more than life no matter what.
Thanks again for all your support. Nicole
Saturday, November 8, 2003 10:39 PM CST
I have been quite busy keeping up with Luke's new OTC meds. He has been taking a lot of Tums as well as ZOfran for his nausea. I even threw in some Zantac just to keep in interesting --- CONCLUSION -- Nothing works. He still has nausea every day and once a day throws up without warning or provocation.
Luckily I am saving to get the carpeting in my Family Room replaced with something easier to clean up -- this carpet has had it!!
Luke's spirits are great and he is still quite active, although still getting tired easily and taking naps and going to bed much earlier than his usually does.
He is so excited about his upcoming birthday -- he is turning the big 5 !
Thanks again.
More later.
Monday, November 3, 2003 8:41 AM CST
Luke has had a pretty good week overall. He still is experiencing nausea every day with ususally only one episode of vomiting. He is very tired which could be in part to the chemo and has even been going to bed by 7:00/7:30 pm.
I am going to check with his physicians today about doing some tests on his GI system to rule out any irritation along this track which just may be causing this effects.
Otherwise, we will proceed with our 8th chemo cycle in 2 weeks and then the dreaded and much anticipated MRI to see what is cooking inside.
Enjoy the photos -- the kids loved Halloween. Plus check out Isabella's webpage for her halloween costume (http://www.babiesonline.com/babies/b/bellanicole/) as she wouldn't stand with her brother and sister for a group shot.
Thanks for the love.
Sunday, October 26, 2003 9:52 PM CST
Day 3 has passed without incident. Yesterday however, Luke felt really sick in his tummy after his chemo treatment. I think maybe because some of the Temodar was not completely dissolved in the juice it made his belly feel ugh! Plus, I had a "flip-out" when he spit out a large undissolved piece on the carpet. I guess I feared it would melt the carpet -- forget what it is doing to his stomach.
Otherwise, we have 3 days down and 2 to go.
We have had a full week of fun -- Coplay Halloween Parade on Tuesday, Fundraiser Garage Sale Fri & Sat, Wizard of Oz Sing-A-Long Night (complete with costumes) Saturday night and today we went to the Big Apple Circus at Lincoln Center in NY. The kids loved it although Alexis slept through part of it and Luke at one point said he was ready to go -- but they then found their nitch and all was forgotten.
We try and try to keep them busy and their lives full of fun-- sometimes it wears us down and the frustration sets in when you feel they do not appreciate all your efforts on their part. But, I try to remember they are 4 and under and may not comprehend the sacrifices we make for them. Just once, however, I must confess I wish Luke would not think I am a dumbhead because I refuse to give in to all his minute after minute whims.
All-in-all we are moving a long nicely. Bumps in the road keep creeping in but as I sit here in silence with them all tucked away safely in bed, I love the sweet innocence of their childhood and I cannot wait for a new day to enjoy the joy of them in my life.
Sleep tight all till tomorrow.
Friday, October 24, 2003 7:18 PM CDT
We had a really good week and Luke had no complaints of minimal complaints - mostly that he was tired. That will only increase now with the start of treatment.
Chemo begins tonight and I cannot wait till the 5 days end. One more cycle will be down with 2 more to go until re-evaluation. I hate to wish his life (or mine for that matter) away, but I so look forward to the day this treatment is behind us. I know the journey isn't over then and of course the fear is constant that without the safety net of treatment, doom can set in -- but I feel like it will be a well deserved reprieve along our journey.
Luke loves to read all his journal riddles and now is telling everyone about his web page. He is such an amazing little man (even when he is bad!) and so full of life you cannot help but get pulled into his world.
We will keep you posted on how the chemo goes -- if there is any reactions this time or not.
Nicole
Monday, October 20, 2003 8:05 PM CDT
Things are much improved at the homestead. We had a good weekend with Luke and although he has problems listening to us, we are thrilled that he is feeling better and hopefully out of this crazy few weeks of up and downs.
Of course, his 7th cycle of Temodar starts this week -- so we are a bit nervous about how his body will react and if it will show allergic reaction symptoms again or if that was just a fluke last time. I am reminded at this time of some sound advice a good friend gave me "It is all about managing the fear" (Thanks Lisa!) and I will continue to struggle with that management issue for the duration but today is a good day and I thank God we had today to spend and look forward to tomorrow.
This weekend we hope to take Luke to the Big Apple Circus (chemo and all) and will share with you our adventures once we get back. In addition, we are working towards our First Annual Yard Sale this weekend to raise money for the Pediatric Oncology Support Group of the Lehigh Valley. Thanks to all our friends for their contributions -- now once I get it all organized, and the weather cooperates, we should raise some money for group and be able to start attending to the mission we set forth.
More later! Love to all Nicole
Tuesday, October 14, 2003 1:01 PM CDT
Not that it changes anything of the last few weeks, but yesterday we went into the hospital after Luke was sick most of the day with vomiting headpains and for the first time, a fever. IV fluids really helped perk him up as I am sure he was dehyrdrated. He feels much better but is still not quite himself.
I am very tired so I bet a few days of normalcy will spring him back to his normal self.
The bad news is that we still are no closer to solving the question of what is causing this all -- so until that happens I remain a little concerned.
MOre later Nicole
Saturday, October 11, 2003 9:14 PM CDT
Luke has been up and down with the headaches and nausea. The plan currently is a watch-and-see. Luckily, he seems to have as many good as bad and the bad moments are not very bad or long. We are thinking too maybe he is just having "migraines" he unfortunately inherited from his Mom? Who knows?
Tonight we participated in the "Light the Night" evening sponsored by the Leukemia-Lymphoma Society with our friends the Gaspar Family. Luke carried a lighted WHITE balloon in symbol of someone fighting cancer and we all carried red balloons in support of his fight.
It was a truly moving evening to see what seemed like an endless display of red balloons in the night illuminating the evening sky. We are thrilled to have been a party to it.
Thanks for all your cards - love - support. Enjoy the new pix.
Tuesday, October 7, 2003 7:21 AM CDT
We are off - to Philly again today. After a week of unexplained nausea and vomiting, followed by a weekend of extreme headaches and then nausea again Monday, Luke is heading in for yet another CAT Scan. Oh my, when will someone figure this out. I fear it could be one or all of the three cysts which grace little Luke's tumor which would mean another MAJOR craniotomy to dig deep down in there to either aspirate or attempt to remove. Not a pretty sight.
We also wonder if it could just be, at least the nausea and vomiting, a stomach issue. Maybe from all the medications and chemo and stuff, his poor stomach has just had enough and is "fighting" back. I don't know but to see him holding his head laying on the floor in extreme pain brings back all too painful memories of myself and extreme migraine pain that had me crawling on the floor in search of narcotics. Why isn't it me instead of him?
Thanks again one and all for all your support. We will, as always, get through this day and the next and the next all with God's blessing and guidance and the love and support of all our friends!
More later.
Tuesday, September 30, 2003 4:01 PM CDT
CRAZY!!!! Well, it took me 3 days to realize but I finally have concluded that Luke is not having an allergic reaction to his current chemotherapy of choice - Temodar. It seems to be causing rash, hives and severe itching all over his body. Benadryl seems to clear it up but of course, another hurdle to conquer. WIthout explanation yesterday and today we also had lovely vomiting with projectile. LOVELY -- My carpet it history. Why Why Why. Yesterday I was thinking that the last 6 months have been a waste. Tumor is the same. Cysts are still the same despite a disappearance of one and re-emergence of it 3 months later. Shunts have been revised. Unexplained vomiting. Now the rash.
Calgon take me away!!
The view from Holland these days isn't as picturesque as it has been -- maybe I need to move to Sweden.
Thursday, September 25, 2003 9:43 PM CDT
Good News and Bad News Yesterday's MRI showed that the tumor is stable and has not grown any since the last MRI of June. However, bad news is that the 3rd cyst about the tumor which had previously disappeared last MRI has returned again and is pressing against the 3rd ventricle. We are going to continue the Temodar at this point for another 3 months and see if it makes any difference and we see any change. At that time, Luke will be re-evaluated and the neuro-oncologist will decide if we will continue. His vision is, luckily, stable as well with vision of 20/32 in the right eye and total blindness in the left.
We are all recovering from a busy week which included the Pediatric Oncology Support Group of the Lehigh Valley's Resource Fair on Tuesday night. It was a beautiful event and Luke, along with all the other kids, loved the visit by the Cat in the Hat. Hope to get some new pictures up.
Thanks for your ongoing love and support and your continued prayers.
Nicole
Thursday, September 18, 2003 6:38 PM CDT
Life has returned to somewhat normalcy, abeit a busy normal. Luke & Lexi started Preschool late due to Luke's unexpected surgery & hosptial visit, but both have adjusted well. Luke attends 4 mornings and Alexis 2 mornings, although she cries that she wants to go every day. Luke's balance has been great and so has his appetite. He has been gaining a little weight lately but we are not too concerned. He looks really healthy and I figure a little extra weight can go a long way if he needs some reserves down the road.
We are all gearing up for the Resource Fair at Camelot for Children on 9/23 and I have been busy getting a the little incidentals ready. I hope it is a very pleasing event full of information and fun for everyone. We will post pictures after the event.
Don't forget to click on the pictures link here and check out some more pictures of Luke & Luke with his sisters.
Love you All Nicole
Thursday, September 4, 2003 12:20 AM CDT
Unfortunately we returned to CHOP yesterday and spent the greater portion of the day hanging out in the ER. Luke was really getting progressively worse before we left with headaches, nausea and vomiting. On the ride down he screamed in pain and continuously vomited. Crazy as it sounds though, after 5 minutes of laying down in the ER he was a new man. Tests were performed and lots of waiting, his shunt was tapped by a very nice Neurosurgical resident Dr. Pandey but no one really knows what is going on. He had to stay overnight for observation in the PICU but that just meant little rest. They were waking him every 1-2 hours for neuro eval. Today he seemed great as well but lets remember he has been laying down the entire time. As suspected he threw up a few miles from home. They think his body just needs to adjust to the new pressure and all will be fine. I guess only time will tell but this crazy ride has just been getting crazier and I really need to get off for a while and rest.
Love to all and thanks for all your prayers. A special thanks to Beth for playing Mommy (and Lew) to Alexis during my absence. She looks wonderful!
Monday, September 1, 2003 2:07 PM CDT
Today we returned from an unexpected 4 day stay at CHOP. Luke had been experiencing intermittent nausea and vomiting, especially upon rising in the morning about a week ago. A CT Scan on 8/29 showed that the ventricles were enlarged and so we immediately went down to Philly to consult his neurosurgeon. More tests were done and Luke had brain surgery performed on Saturday morning (8/30/03) to replace his proximal shunts. We learned after the surgery that both shunts were blocked. Luke experienced some pressure related nausea and vomiting on Sunday and had to stay an extra day. He is still tired and recovering with 2 large incisions on his head. Unfortunately he will nto be able to start school tomorrow but hopefully by next week he will be ready to go.
Things have been a little crazier than usual in light of the above, but we keep going. Luke's behavior has been a little testing these days and we hope that it is something we can easily bring back together for all our sakes.
Keep us in your prayers.
Nicole
Friday, August 1, 2003 9:31 PM CDT
Our sweet dog Julius died this evening and we buried him in a lovely green corner of my parent's yard where the forest of norway maples grows and where Julius as a puppy, loved to play and nose around. He was surrounded by those he loved and those who loved him, specifically my brother Joe, my husband John and myself.
Luke & Alexis, my sister Suzette, Joe, John and I launched balloons in Julius' memory, sending puppy bones up to heaven for him.
Luke and Alexis are sad, but they don't understand completely. We are helping them by encouraging talking during this time and some day, a new puppy will grace our lives.
Friday, August 1, 2003 6:55 AM CDT
Luke has begun his 4th cycle of Temodar and so far he is doing well, despite some tiredness. Luke also started swimming lessons on Monday 7/28 and LOVES IT. His favorite part is the rocket off the wall and trying to blow bubbles underwater. We have seen him go from an unsure little boy afraid of the water unless he was holding on to an adult, to a self-confident I can stand here little boy so wants to do it all by himself. All this in just 3 days!
Yesterday Luke also began his first violin lesson. His violin is so small it is amazing. Alexis also wants to try lessons so I will sign her up as well. We hope they enjoy this and can stick it out. Luke's homework is to practice holding his violin under his chin/jaw. He needs to work up to supporting it for an entire song. Hard work but we are working on it.
I updated the pictures in the photo album to reflect our recent trip to NY for the Kid's Cruise.
Enjoy and thanks for all the continued support and prayers. Nicole
Monday, July 28, 2003 12:26 AM CDT
Luke and the family attended a Global Village Day at Camelot for Children on Saturday. What an amazing display of love and compassion was exchanged by the Global Village candidates. We got to participate in a dunk pool, face painting, pinatas, hair stringing, popcorn machine & snow cone machines and talk and visit with young adults from over 40 different countries.
On July 17 we also attended Children's Brain Tumor Foundation's Kids Cruise around New York harbor in a 110 year old sailboat, the Pioneer. We enjoyed pizza for lunch, music, a magician and once again face painting which Luke & Lex had put on their arms!
We had a lovely time, the weather was great and we truly appreciate the ability to participate.
MOre later. Hopefully I will get more pictures posted!
Sunday, July 6, 2003 9:57 AM CDT
Despite some headaches and nausea over the last few weeks, which remains unexplained, we are on the threshold of Luke completing his 3rd cycle of Temodar tonight.
So far the only side-effect has been extreme tiredness both during and the week after treatment.
We are so proud of Luke and all his strength and pray every day that God will keep him strong and with us. Although like any child his age, he tests the boundaries, I couldn't be more proud to be his Mommy and share this special journey with him.
Today I am reminded how nice it is to live in "Holland" rather than "Italy" where we have become better people because of our journey, and our lives more meaningful. So, as we embark on another wonderful hot and sunny day, I embrace all that we have today and the pleasure of spending it with my babies!
Keep praying and we love you all!
Friday, July 4, 2003 9:53 AM CDT
We returned yesterday from Camp Sunshine in Casco Maine and have only wonderful things to report.
It was a fabulous experience for all. We met 33 wonderful families and a ton of volunteers from all over the USA.
Each child was assigned an individual volunteer counselor and they had a plethura of activities for all age groups. Parents participated in Adult Blooper Games as well as Parent Discussion Groups.
We connected with new families and learned a lot about the strength and courage of our children. Their resilience is amazing and the lessons of life that they teach us are remarkable. We saw first hand the love and innocence of children, treating each other - sick or well - as a friend. We discussed the struggles that we all face as brain tumor families and the special bond we all share.
Go Camp Sunshine Go!! Thanks too to the Children's Brain Tumor Foundation for their generous support of Brain Tumor Week at Camp, which made our trip possible!
Wednesday, June 25, 2003 9:52 AM CDT
MRI was performed yesterday June 24 and the preliminary results indicate that one of the 3 cysts on the tumor has disappeared entirely. Additionally, the tumor appears stable.
We will learn more on July 7 when we meet with the neuro-oncologist but this is definately encouraging news!!
More later.
Monday, June 9, 2003 8:06 AM CDT
Day 6 is among us which means that we have successfully finished the 5 days of Temodar. Yippie!! Luke did wonderful and although he has been quite tired and napping often, he has not had any other noticeable side effects.
The MRI is 6/24 with interpretation by the Neuro-Oncologist as well as a vision screening by the Neuro-Opthamologist on 6/26. We have heard wonderful stories about the success of Temodar, I hope we are among those!
Thursday, June 5, 2003 6:18 PM CDT
Hi everyone. Luke is finally over his cold/virus and we have just begun the next round of chemo Temodar. He seems to tolerate it well although we have conceded that he is just not ready for swallowing those large pills and we now open and mix with juice according to the crazy protocol (we look like lab freaks all doned in coats, gloves, masks etc.). Luke also attended the Children's Brain Tumor Foundation Dream and Promise Benefit in New York City and had a great time. Of course, he was a "celebrity" having participated in their very moving video to raise money for Pediatric Oncology research. Also, Luke along with the entire family has been accepted to attend Camp Sunshine during Brain Tumor week. We are all excited to go and will keep the page updated as to our trip. In the meantime, thanks for all your continued prayers. We are taking one day at a time and trusting that all will work out for all of us. Check out Luke's pictures too.
Friday, May 2, 2003 7:48 AM CDT
This page has just been created. Please check back for additional updates.
His next adventure involved DAUGHTRY...yes folks, Chris Daughtry, and his great band in concert, live, at the Sovereign Center. But that is only part of the story.
We arrived around 4pm in Reading
Of course, things never run completely smooth.
Tonight we are heading to Mass and then to cousin Charlie's for dinner. I look forward to these special family times and memories. 
We are excited to watch her grow up too.
