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Wednesday, September 29, 2010 10:09 AM CDT
A long overdue update!
Erik recently had all of his yearly medical checkups and testing. The word is STABLE on all accounts. What we have been most concerned about was the blood vessel damage on the left side of his brain. He had surgery four years ago on the right side. The left side at the time showed some damage but not as bad. That has not gotten worse….thank God! Erik is out of school and we are looking for things to fill his days. He was done with school. All the English and history he had enough. He worked so hard in all his school years to be successful and now he has come to a halt. He works part time at Giant and he loves it. He needs more. We have sent resume’s to all of the doggie day car and kenneling places in the area but have not heard anything back yet. Other than one sweet lady that called and said she wished she did have an opening for him because she has heard of Erik and his journey and she would love to have him. Its strange how sometimes strangers can be more compassionate and understanding then people you are side by side with daily. We will be starting to make calls and maybe even go to project hire again. He needs to be busy! He has discovered a love for reading through comic books. I don’t care what he is reading as long as he is. Thank you Kevin for getting him involved in that. We truly appreciate all the time you spend with Erik.
Well I did go to LA in September and through St. Balkricks team 46 Mommas shaved their heads for pediatric cancer awareness. 46 Represents the number of children dx’ed every day in the US. All 46 Mommas have kids with cancer and many of these Mommas have lost their precious children to this dreaded disease. After our head shaving we all appeared on Stand up 2 Cancer on Friday night. It was a real nice experience and very empowering. There is nothing I wouldn’t do to help kids battling cancer.
Last Saturday was our yearly Caring 4 Kids with Cancer. A lot of hard work and still not very well attended yet we raised more money than last year. People care, I know that because the money came in. It’s just the wrong kind of event at that time of year. So we brain storm and come up with better ideas. I will NEVER give up. There are so many fantastic involved in helping and I sure feel very lucky to have the friends I do. VERY LUCKY!
I would like to ask for prayers for my daughter Jennifer. She broke her leg last week and had to have surgery last Friday to put in a rod and pins. She has been in a lot of pain. Her husband is taking very good care of her. Jen is a lucky girl finding a man like that. I’m pretty lucky myself and count my blessings everyday for all that I have.
We now approach October…the most beautiful time of year.
Enjoy
Norma
Friday, June 25, 2010 7:21 AM CDT
Graduation day 2010! I set here thinking back through the years of Erik growing up. His struggles and his achievements! How blessed we are to have him and to have to come to this day of his graduating. I know all parents are proud of their children when they graduate, yet this is a different kind of pride. He is such a special young man. A strong man! When I think back to the FACT that we could have lost him and what he has been through to get here to where he is today. My prayer to God is in thanksgiving for his healing hand on my son. I know today that we were given a miracle.
Thank you everyone that has been part of this journey……without you we could not have made it.
Monday, June 7, 2010 8:51 AM CDT
I checked Erik’s website and realized I had not written anything in two months. Things have been busy and hectic. So today June 7th I update…..Erik’s 19th birthday. How special it is to us and to him.
If anyone would like to wish him a Happy Birthday his e-mail address is ezimmerman@comcast.net He would love it.
The Wine Tasting for a Cure was a huge success. Everyone had a great time and we are going to make this an annual event. Next event is September 25th at Valley Road Park. At this event I invite all the young survivors in the area (that I know of) and invite them and try to make it a special afternoon for them. We will be having a balloon launch again. There are so many precious children battling this disease and all too many that have earned their wings in to heaven. God bless them. They are missed so much.
Erik is doing well. He will be having all of his annual testing done in September this year. I am praying for continued clear scans and also no further damage to the blood vessels on the left side of his brain. This is being monitored by doctors at CHOP and at Boston Children’s Hospital with Dr. Scott.
We will be having a graduation picnic for Erik on June 19th. He wanted a pig roast so a pig roast we will have.
I am still working on “46 Mommas Shave for the Brave:” That will be on September 13th and location is not yet decided. They are hoping for the Ellen Show or Good Morning America. We will see. I will update on that later. I am looking for supporter for this. Anything you could spare….no donation is too small and goes towards pediatric cancer research. This will be through the St. Baldrick’s Foundation.
Wednesday, April 7, 2010 11:26 AM CDT
I am involved with a group of Mom’s that are trying to make a difference. We are called 46 Mommas shave for the brave. These are 46 Mom of kids with cancer from all over the United States. On September 13th we will all be gathering together and we will shave our heads honoring not only our kids but all kids suffering with cancer. So many of these Mom’s have already lost their precious children, yet they care enough about all the other kids and all the kids that will yet become diagnosised in the future. I ask you ….Is there any greater love then this. Please support me in my efforts.
Please go to http://www.stbaldricks.org/teams/mypage/teamid/64861 find my name among participants and support me. My ID # is 373858
46 mommas and St. Baldricks’ needed a bio on each momma. Below is mine.
Many years ago I knew nothing about cancer. No one I knew personally had ever had cancer. Life was good. I married my husband and he loved my two kids from a previous marriage. We knew we wanted more kids and my being 38 we thought that we would start right away. Two months later when I found out I was pregnant it all seemed so perfect, and it was. After a fantastic pregnancy and natural childbirth we had a beautiful son. He was perfect and healthy. He grew and was reaching all of his milestones early…until….! Just after Erik’s first birthday when he had just started to walk…he stopped. He started to set down whenever you would try to have him stand. Then on a weekend that my husband was away he started to throw up…constantly and he screamed as if he were in pain the whole time. Off to the doctor we went and all was well. He had the flu that was going around. Thank God he would be feeling better soon. Wrong. In the next weeks the symptoms continued but now he was only throwing up in the morning. He was constantly uncomfortable. Many doctor visits followed. I was now pregnant with our second son Jason. Then one Sunday night at a family dinner Erik was sitting in his high chair and all of a sudden his eyes started to blink really fast with his eyes looking up. The fear was there that my gut instinct was telling me…there was something really wrong with my baby. A call to the pediatrician that night was a little fear filled and heated. I can only remember my saying “who” is responsible now if something happens to my baby. You have to do something.
A return call the next day from our pediatrician was that we needed to take him to a neurologist at Children’s Hospital of Philadelphia for tests. He was then thinking that with the symptoms of lack of balance and not walking, maybe he had MS. Two days later we took him for an appointment and the doctor did a complete exam and he didn’t think so. He did a CT scan and it showed nothing and he recommended an MRI just to rule out a few things. He had the MRI and we went home. The next night we received the call that changed my son forever. Our lives turned upside down. The doctor said that the MRI revealed a mass in his brain. There was something there and they needed to find out what. He told my husband that he believed it was a tumor and it would need more tests and to be removed to see if it was cancer. We were told to wait for a call from CHOP as there was no bed at the moment. We waited until the next day at noon and they called and said to bring him in.
The next two days were a blur of tests and doctors in and out of his hospital room. We were visited by a neuro-oncologist as well. They already knew what it was even before the surgery but were not really telling us. The morning we handed him over to the OR nurse was one of the worst moments of our lives. He was too small for a stretcher so we carried him in. My heart was torn out as I didn’t know how he would ever make it through major brain surgery; after all he was just a baby. Just a baby……who turned out to be the most courageous and strong human being I have ever known. The surgery took around four hours and when they wheeled him out, he was still asleep but they had put his teddy bear in his arms. At that moment I prayed with all my heart for his health and safety.
Erik went through 14 months of chemotherapy and finished his treatment just prior to his 3rd birthday with six weeks of full brain and spine radiation. This one sentence holds all of the pain and suffering that my son endured.
Erik is now 18 and will be graduating from high school this June. We have received a miracle in his healing. Yet he knows the daily struggle of trying to keep up and to work twice as hard at his learning then the rest of his peers. Every day is a challenge for him and we are so proud of him for all of his accomplishments.
I am proud to be one of 46 mommas that will shave for the brave…our children and the many other children that suffer through treatment and the all too many angels that have left us too soon.
Sunday, March 28, 2010 6:47 PM CDT
I know I have not updated in a while. So many sad happenings. Mackenzie passed away about four weeks ago. She passed away peacefully in her home surrounded by her family. Thank you to all who donated to our “Caring 4 Kids with cancer fundraising events because our money rose for 2009 has gone to Cure Search for Alveolar rhabdomyosarcoma. This is a very rare type of pediatric cancer and what Mackenzie had.
Then last week my dear precious niece Amanda passed away. She was only 32 and had battled 3 types of cancer in the past 6 years. She leaves behind her husband and an 8 years old daughter. The past three weeks have been very rough to say the least. Both were loved dearly and will always be remembered.
This drives me even harder to bring awareness to pediatric cancer and how our precious children suffer and all too often lose their battle. This is not right and should never happen to any child. So many people will see a TV show about cancer kids and read an article and just turn away saying that Oh that’s just too painful to even think about. That’s true yet that is not helping these precious children. A child being diagnosised with cancer can happen to anyone …….. I know this I have lived this. Please help me to try to make a difference. We are planning our three events this year starting with a Wine tasting on May 22nd and there will be more information to follow in a week or so. I am also involved with a group of Mom’s that are trying to make a difference. We are called 46 Mommas shave for the brave. These are 46 Mom of kids with cancer from all over the United States. On September 13th we will all be gathering together and we will shave our heads honoring not only our kids but all kids suffering with cancer. So many of these Mom’s have already lost their precious children, yet they are enough about all the other kids and all the kids that will yet become diagnosised in the future. I ask you ….I s there any greater love then this. Please support me in my efforts.
Please go to http://www.stbaldricks.org/teams/mypage/teamid/64861 find my name among participants and support me. My ID # is 373858
Sunday, March 28, 2010 6:46 PM CDT
remembered.
This drives me even harder to bring awareness to pediatric cancer and how our precious children suffer and all too often lose their battle. This is not right and should never happen to any child. So many people will see a TV show about cancer kids and read an article and just turn away saying that Oh that’s just too painful to even think about. That’s true yet that is not helping these precious children. A child being diagnosised with cancer can happen to anyone …….. I know this I have lived this. Please help me to try to make a difference. We are planning our three events this year starting with a Wine tasting on May 22nd and there will be more information to follow in a week or so. I am also involved with a group of Mom’s that are trying to make a difference. We are called 46 Mommas shave for the brave. These are 46 Mom of kids with cancer from all over the United States. On September 13th we will all be gathering together and we will shave our heads honoring not only our kids but all kids suffering with cancer. So many of these Mom’s have already lost their precious children, yet they are enough about all the other kids and all the kids that will yet become diagnosised in the future. I ask you ….I s there any greater love then this. Please support me in my efforts.
Please go to http://www.stbaldricks.org/teams/mypage/teamid/64861 find my name among participants and support me. My ID # is 373858
Monday, February 22, 2010 6:27 AM CST
I am asking for prayers for any one visiting Erik's site. There is a precious little girl named Mackenzie that lives just a few miles from my home. She is seven and has been battling cancer since she was two. She has Alveolar rhabsomyo sarcoma which is a rare form of cancer. She does not have a website but her Mom sends out e-mail updates all the time. Please read her last update and pray for precious Mackenzie and her mom and Dad. I find it devestating that I have to comforting words for tracy and I so want to comfort the family. I have always found prayer to help for strength.
It is with great sadness and many tears that I am sending this update. It is evident that Mackenzie's body is quickly deteriorating due to the cancer.
Her belly continues to expand and the whites of her eyes are looking yellowed - a visible sign that her liver is not functioning properly. She is becoming sadder, quieter, more withdrawn and more uncomfortable each day.
After exchanging emails with Dr. Wexler, it is obvious that he has nothing else to offer Mackenzie from a medical perspective. Given the decline of her liver, he cannot safely administer either traditional chemotherapy or biological medications to her. We know that he would do anything possible to help heal her and that at this point, it is out of his hands.
Knowing this, we are struggling with whether to take her to MSKCC tomorrow or not. We will take her if we feel it would be beneficial for her in any way, even just as mental and emotional reassurance of some kind. I know she is scared. So are we. We are in a position that is terrifying, heartwrenching, and just completely unfair.
We have asked Dr. Wexler to arrange for home hospice care for Mackenzie as soon as possible. I am hoping a nurse can come as early as tomorrow (Monday).
I know that if prayers, sheer will and determination could heal Mackenzie, she would wake up tomorrow and get on the bus for school. Unfortunately, she has a horrible, devastatingly aggressive disease that just won't quit. She is truly a remarkable little girl who has defied all of the odds already.
Please pray for Mackenzie's peace and comfort in the coming days.
-T
Thursday, January 14, 2010 3:06 PM CST
All is well on the home front. Erik has finally been transferred to Giant Grocery store in New Hope. Stop & Shop really made it crazy with all this but Giant took over and pushed it through. Erik will be much happier working there. He is doing well in school and settling into the New Year. It’s hard to believe that the kids are almost half way through the school year. My concerns are starting now about Erik having too much time on his hands once he is out of school. His Dad and I both agree that she should only be working part time. He deals with a lot of fatigue and always has. This is just another of the long terms affects from the radiation he received. People do not realize how all of these life saving treatments affect our cancer kids for the rest of their lives…..yet thank God I can say the rest of HIS life. Once Erik graduates he will have a certification from Poly tech for Boarding and Kenneling of animals. He will be taking the test for that soon. Hopefully we can get our financial situation straighten out
Within the next year or two and we can build the kennel we have been planning on and Erik will have that for his full time employment. It would be from home and he would be able to do morning and afternoon work and yet still have time that he can rest if he needs to. He will not need his driver’s license as it will all be located at home….That’s our dream for Erik.
Jason has gotten his driver’s license. I have to say that young man has grown up a lot in the past couple of months. It’s amazing. Between getting a job and then driving there are so many changes in him. Erik has totally handled the fact that his brother has his license and that he will not be driving himself. He has handled it all very well. I still feel real bad for him as I know inside it is really hurting him. He just loves his brother and is happy for him at the same time.
We are beginning to work on our first “Caring 4 Kids with Cancer” fundraiser for 2010. We will be having a wine tasting at the Lambertville Rescue Squad. Wine for a Cure! It will be in May and more information will follow on this.
Nothing else new. Erik has his next doctor’s appointment in February with endocrinology.
For now I will end asking for prayers for a young girls that I have so truly just fallen in love with. Her name is Brianna. Brianna was born with CP and then later dx’ed with a brain tumor. She is an amazing little girl. Stop in and say hello on her website.
www.caringbridge.org/visit/briannamoore
Friday, December 18, 2009 7:53 AM CST
Below is a copy of the information being read at Hunterdon Central High School tonight at a Ride4erik fundraiser. I thought maybe you would like to see it.
I do want to also compliment Erik in yet another way. Last week Jason found and purchased his car. He will have his drivers license the beginning of January. We were a little concerned about how Erik would handle his brothers happiness.....As expected, there was no jealousy or attitude towards Jason. Erik is completely happy for Jason getting car and is experienceing his own joy through Jason.
Cancer….one word, six letters. Filled with pain, suffering and life changing disabilities and all too often death. Everyone knows of someone in their family or a friend that has had cancer. Yet, imagine all of this being spoken about a precious baby, a beautiful little boy that is only 17 months old. This is the story of Erik, a journey of a young man that is now a senior at Hunterdon Central. Erik was only a baby when he was dx ‘ed with medulloblastoma. This is cancer of the brain and spine. This was November of 1992 and the doctors said there is a very low rate of survival. We received a miracle!
Today Erik is a senior and …yes he does struggle with everyday disabilities caused by the treatment that saved his life. But he is here and still struggles to be like everyone else.
Three years ago my friends and I started a nonprofit foundation called Ride4erik/Caring 4 Kids with Cancer. We have several fundraisers a year to raise money for pediatric cancer research and also to financially assist families in our area. We also want to create awareness to these precious children that are battling different types of cancer. This year we have helped 6 families. Families that are trying to figure out how to make ends meet and give their children a memorable Christmas. We are also donating money to pediatric cancer research.
Thank you for helping us to make a difference!
Tuesday, December 8, 2009 10:51 AM CST As we approach Christmas I am counting my blessings and there are many. We all have our health. No one in my family has been sick yet this nasty fall/winter. Of course I totally realize that I should not have said that. BUT we are all doing well. Jason has found THEEEEE car of his dreams and they will be picking it up later today. He is doing well in school and we have a meeting later this week to begin talking about college and s a t’s and all that. Jason has decided (I hope he sticks with this) that he wants to be a police officer. His Dad and I are thrilled as we know he would be excellent with this choice. He has the temperament, honesty and nonjudgmental being to be successful in this area. Monday, November 9, 2009 9:45 AM CST Well if you have gotten this far you have seen Erik’s graduation picture on top. I am so proud of him and all of his accomplishments. We had received very good news on Wednesday pertaining to Erik and his Pre vet studies and training. Erik teacher (very wonderful lady) met with a Doggie Day Care in Bloomsbury NJ. They are willing to take Erik on as part of his studies. She said they heard Erik’s story (past) and of his love for animals and his studies last year and this and they truly want to have Erik work with them. My heart is humbled with this and my gratitude runs over. Erik is studying right now for his boarding and kennel license. He will be tests…I think before the Holidays. This test will not be altered or changed in any way for Erik. He has to pass it on his own merits. I am not worried as he is studying like crazy. As I said I am so proud of this child. His progress and abilities are due to a lot of fantastic people that have worked with him in the past 12 years. People that have believed in him and worked with him and encouraged him to strive for more. We were told that he would not make it this far in his education or that it would be very unlikely he would People have believed in my child and not given up because someone said he MAY not be able to make it. He’s not done yet either. There is further education he can still go to for training with animals. What Dad and I are planning to do IF we ever can get money together…. We want to put up a kennel on our property. This will be an investment for Erik’s future and a job he can do and be successful….long after we are gone. He won’t need a driver’s license as everything will be right there. This is our dream and I think I may need to start buying lottery tickets for this dream to come true. But I know it will! Erik has also been progressing a lot more because he has developed a love for reading…thanks to Kevin Ireland. Kevin started Erik with reading comic books….fantastic idea. He reads in all of his spare time.
Thursday, October 22, 2009 11:32 AM CDT I went in to check Erik’s website this morning and I was shocked to see how long ago my last update was. It truly has been an extremely busy month.
Friday, September 4, 2009 5:54 PM CDT End of the Summer….where did it go.
Wednesday, August 26, 2009 2:00 PM CDT Erik had an appointment with the neurologist this week. Dr. Ichord specializes in pediatric strokes prevention at CHOP . She said that there were no changes in the blood vessels in his brain…right or left side. So that is good news. She felt it was truly amazing how well he was doing. His testing is on cd and on the way to Boston for Dr. Scott to review as well. All good news and thanking God!
Friday, August 14, 2009 12:15 AM CDT And another weekend is here. Erik went to Philly this past week to the clinic for yearly checkup and results. Scans show clear for brain and stable for spine. This is good. No this is fantastic. However no real update on the MRI of brain. Erik (dad) was suppose to get a CD copy of complete testing so we could send to Dr. Scott in Boston but on the day of testing it was not done. When he went on Wednesday to clinic they said they still did not have it ready…. Now let me add that getting a copy of testing on a CD is not an unusual request. I know that Erik’s neurologist at CHOP will be reviewing them as well….sometime….. But it is Dr. Scott his surgeon that we want to view them. So we wait. Praying that the blood vessels on the left side of Erik brain are not any worse. Also prayers for the right side to have gotten better as well. The surgery was three years ago this month so all healing and re growth should have taken place by now. So we go forward, THANK GOD for all of our many blessings with Erik’s health. I may get frazzled sometimes (sometimes) but I do truly know how blessed we are. It’s just so hard sometimes because I want so much for Erik. I only wish I could make things happen for him. That he could make more friends and be happier. A lot of the time he is lonely and….dang I just want so much for him. He’s such a great kid if people could only get to know him. Monday, August 3, 2009 1:23 PM CDT Please keep Erik in your thoughts and prayers tomorrow. He will be going to CHOP for all of his yearly testing. It will be 16 years ago this November that Erik was dx’ed. 16 years yet the stress level still rises when it’s testing time. It’s more than just looking for cancer. It’s a time that they look for any addition damage that would be caused by the treatment he received years ago. Some don’t understand that. How can anything show up now years later? Well that’s why they call it Long Term Affects of treatment. There are all kinds of things they look for and my prayers are that they do not happen. He has already been through enough. Yet he is such a strong young man. So determined in life to do the things he wants. He will have MRI/MRA of brain and spine. This takes about 3 hours and they will be using anesthesia. Long time to lay still. They really need some accurate readings on the blood vessels in the brain. Right side and left side. Monday, June 29, 2009 1:41 PM CDT Last week there was a huge childhood cancer awareness raley in Washington DC that was sponsored by Cure Search.
Friday, May 22, 2009 4:59 PM CDT The barometer for donationg money below this message has nothing to do with any of our fundraising. That's for caringbridge and PLEASE do not feel any pressure to donate money.
Friday, May 22, 2009 11:02 AM CDT Happy Friday! A three days weekend coming up. Monday, April 20, 2009 11:32 AM CDT Well there is good news and sad news in this update. Tuesday, March 17, 2009 12:18 AM CDT Not too much happening around the Zimmerman household. Two weeks ago we were all sick with the flu. All but Dad that is. I don’t know how he avoided it. Friday, February 13, 2009 7:57 AM CST Happy Valentines one day early!
Tuesday, January 13, 2009 10:39 AM CST Happy New Years to all! All is well in the Zimmerman Household. Erik is doing very well in school and at work. I had wanted to talk about Erik’s IEP we had several weeks ago. We (husband) were so pleased with the outcome of that meeting. This is setting him up for classes for next year. This will be his senior year. Hard to believe! As of now he is set up to take Pre-Vet again. This is the second half of the course. Through this year they have had to alter the course some for Erik. In the beginning of the year I don’t think that the teacher was all that thrilled to have a “special ed” kid in her class. She has changed her mind now. She has seen how hard he works and how hard he tries to get everything done and complete. The school has also decided to alter the program for other special ed kids to be part of the program from now on because of how well it worked for Erik. They had never tried this before and Erik has been very successful. Erik does have an aide with him as well. This is all I have ever wanted for Erik. That he does the work but is given the tools he needs to be successful. We also met with Erik’s English teacher. She had nothing but good things to say about him as well. Erik is a very good student. He asks to stay after for tutorial all the time. He also has the books out on the table every day reading up on things. Next year after he has completed the pre-vet they also help you find employment as well. All good things happening for Erik right now!
Tuesday, December 30, 2008 3:22 PM CST Ok, you guys all say you want to make a difference . A lot of you believe Obama is the answer to all our problems ( please dont start a political debate on here ...) . He is given us one more chance to ask him questions .
Monday, December 22, 2008 2:17 PM CST I am setting here with the tears flowing. Tears flowing with pride for my son. Erik came home today just beaming…he passed his driver Ed test. He now has a driving permit. I am so proud of him. For some parents this may not be a real big deal for me it is everything. Because of Erik’s treatment EVERYTHING is harder for him. He does not let that stop him from being successful. I have never seen a child study as he does, especially when he started with Driver Ed. This test was not altered in any way. He passed just like others in his class on his own knowledge. I just love him so much and I am so proud of him.
Tuesday, December 9, 2008 1:17 PM CST Things are the same at the Zimmerman household. Although the days are going by so quickly. I can’t believe it is almost the middle of December already. Tuesday, November 18, 2008 8:14 AM CST Sixteen years!
Friday, October 24, 2008 7:40 AM CDT It’s been a while since I have updated. The ride4erik event was …to me…very successful. We raised over 11 thousand dollars. I am extremely happy. The weather wasn’t the best but the event still went on. We had a total of 7 childhood cancer survivors present. It was so great to meet these wonderful kids. I think they all had a good time. They got to ride on the motor cycles with the side cars.
Tuesday, September 9, 2008 10:43 AM CDT Erik and Jason are back in school and I think they are happy about it as well as their Dad and me.
Wednesday, August 27, 2008 10:36 AM CDT What is Ride4Erik? Sunday, August 17, 2008 3:48 PM CDT I finally heard from Erik's pulmonary testing and CT scan Tuesday, August 5, 2008 6:26 AM CDT We are all set up for Erik's appointments on Friday morning starting at 8:45. Friday, July 25, 2008 8:33 AM CDT Erik had all of his appointment at CHOP this past Wednesday. It was a long day starting with leaving the house at 6:30 AM. All went well and I am so very proud of Erik and how he is truly maturing and starting to take care of things. Each and every appointment he conducted himself as if I wasn’t even there. They talked directly to him and he answered everything and asked many questions on his own. It wasn’t easy just setting and not doing the talking but this is so necessary and important for Erik to do.
Friday, July 11, 2008 11:03 AM CDT Well I started bugging Erik’s oncologist and neurologist this morning and I heard back from both. MRI of brain and spine are clear, unchanged so all is well there. MRA all is the same as well. No changes and no worse. I was hoping for better but this is really good news. Erik goes to CHOP on July 23rd for 5 doctor appointments. We also now have to make an appointment to see Dr. Ichord the pediatric neurologist. I have a lot of questions for her. All of Erik’s test results will be send to Dr. Scott in Boston the beginning of next week. I am so relieved about all this news. We can breathe again. Erik has totally recovered from the anesthesia on Tuesday and is going back to work tonight. Right now he is off to the mall with Kevin Ireland.
Tuesday, July 8, 2008 9:29 AM CDT Please keep Erik in your prayers today. He is scheduled for the MRI/MRA to start at 11AM this morning. Because of having anesthesia he/they will be there most of the day. The next couple of days will be rough waiting for the results to come back. Prayers for a clear scan of the brain and also that the MRA shows no further blood vessel damage on the left side of the brain and improvement on the right side of the brain. He had the surgery almost two years ago in Boston and we are hoping that there will be some improvement as last year there was not. Erik has been through so much in the past 15 years and my heart breaks that he even has to go through all of this today. He is now starting to ask all kinds of questions about his testing and why does he have to go and how many more times will he have to go. Thursday, July 3, 2008 7:28 AM CDT Happy 4th of July! Tuesday, June 24, 2008 7:43 AM CDT Good morning to all who visit! Wednesday, June 18, 2008 9:42 AM CDT The below posting is from a friend...a dear friend that I have never met and yet admire and love. She had been on the same journey with a son having medulloblastoma as Erik had. Mimi lost her 4 year old son several months ago to this horrible beast called cancer. Even though she has lost her precious child she is still so caring for others. She has made 3 video's called the cancer hell. Saturday, June 7, 2008 6:36 AM CDT Today, to me is a celebrating day! Erik is 17 today. This day brings so many memories to me. Happy, sad, blessed and a lot of gratitude. My first thought is back to Erik's second birthday. Funny it is his 2nd birthday and not his birth. My most vivid memory is his 2nd birthday and just looking at him and praying over him that he would have many more birthdays. I believed that he would survive his diagnosis of caner just a few months earlier but my heart was full of fear that he would not ever celebrate another. My heart was broke for what he was going through...all in an effort to save his life. A life so precious and needed in our lives. Our beautiful little boy had cancer and we knew we could not lose him. It seams like only a short time ago. Today Erik is 17 and I could never ask for another thing in my life. My prayer was answered. Why has the Lord blessed me so much?
Friday, May 16, 2008 9:53 AM CDT Happy Friday to any one reading this post. It’s raining but somehow it seems calming for the week we have had. Last Saturday my Dad fell in a parking lot in Trenton. Dad is 83 years old but I must say a very young 83. He got dizzy “chasing” a grocery cart that rolled away. He took a really bad fall and ended up with his shoulder out of joint. My brother took him to the nearest emergency room and there first concern was why he got dizzy and was it a heart issue. He has been having many issues with his heart lately. After about 4 hours they attempted to get his shoulder back in to place but the swelling was so great that they just couldn’t. His heart rate was so fast that they couldn’t put him under anesthesia as they had wanted to do. On Sunday morning they took him in to the or and sedated him. The or just in case they had to use anesthesia. They were able to get his shoulder back in and now he can start to heal. He also has a lot of stitches in side of his mouth and out. On Wednesday he was taken to a Rehab in Doylestown PA to start to heal and get back to normal. He just could not have gone home like that and in so much pain. On a normal day my Dad takes care of my Mom who has Alzheimer’s. It’s been a tough week for all of us but as bad as it is for my poor Dad being in so much pain. Thursday, April 17, 2008 12:03 AM CDT All is well at the Zimmerman household. We are really getting close to the end of the school year now. Next week Erik will be ordering his class ring. That has really made me stop and count my blessings. Next year Erik will be a junior in High School. His journey has been so long and hard that it is hard to believe that he is a young man now. It still seams like yesterday that I was holding that beautiful bold little boy in my arms. He had the sweetest smile and giggle. I can remember the nurses used to call him the cheeto kid because he would always come in for his chemo with a bag of cheetos. That was one thing that he could eat and not get sick on while receiving his treatment. So many memories of the past. How am I so blessed to have Erik here with me and to be healed.
Friday, April 4, 2008 11:10 AM CDT Happy Spring to All! Let the good weather begin. Saturday, March 1, 2008 1:03 PM CST I checked Erik website today and realized that I had not updated in quiet a while. All is going well in the Zimmerman household.
Thursday, January 31, 2008 7:16 AM CST Good morning to all visiting Erik’s site! Thursday, January 24, 2008 7:38 AM CST One more child and family to pray for. Monday, January 21, 2008 7:31 AM CST I am asking for prayers for three families that I have become very fond of in the past several months to a year. These three young men have traveled the same journey with brain cancer that my son has. All three have become heaven's newest angel in the past few days. Friday, January 11, 2008 5:43 PM CST Erik's appointment at CHOP went well. After taking xrays it shkowed that his spine is the same and believe it or not better in on place. God is always at working!
Thursday, January 3, 2008 7:35 AM CST The Christmas and New Year holidays were great. Very quiet and peaceful! We had planned to go to North Carolina to see Nancy and Bill but had to change that at the last minute because of Jason’s athletic schedule for basketball. Our plan has now switched to Easter vacation.
Monday, December 17, 2007 8:21 AM CST Just one week until Christmas, and boy is it cold outside.
Saturday, November 17, 2007 6:47 AM CST I am setting here and thinking and praying prayers for thanksgiving.
Wednesday, November 7, 2007 10:09 AM CST Erik had his appointment on Monday and it turned out very well. Actually better then we had thought it would. Report is that the blood vessels on the left side of Erik’s brain are fine. This we knew. The new transplanted blood vessels from surgery are not doing quiet as well as they had hopped which we also knew. The part we just found out is;
Sunday, November 4, 2007 5:14 PM CST Tomorrow morning we have an appointment with the neurologist at CHOP. I am some what anxious about this visit. I am praying that I ask all the right questions. It seams that Erik's care will now be on kind of a maintenance plan. Really praying that the situtatin will not get any worse and that another surgery will not be needed. He has come so far in the past several months. He is maturing and growing in to a wonderful young man. He deserves everything good! Monday, October 15, 2007 11:09 AM CDT Erik has an appointment with the Pediatric Neurologist on November 6th. We sure have a lot of questions for her. I have been thinking and wondering if at this point we should get any second opinions. I think we will both have a better idea of what we will be doing after the appointment on the 6th.
Monday, October 1, 2007 11:30 AM CDT I heard back from Dr. Scott in Boston today. The news isn’t what we had hoped. They don’t think the surgery last August was as successful as they had hoped. I posted his e-mail below. Right now I need to re-group my thoughts and concentrate on the positive. Friday, September 21, 2007 9:11 AM CDT I need to vent!!!!!!
Wednesday, September 19, 2007 6:03 AM CDT We finally got a call from Dr. Ichord last night. There is good news here in that the blood vessels on the right side of Erik’s brain look good. There was some question about this after his last MRI/MRA a few months ago. No problem there for now. Now the situation on the right side of his brain. She said that the transplanted blood vessels (from last August) look like they are starting to branch out and grow. She wants Dr. Scott to see the copies of the cerebral angiogram for more input. Surprise, surprise I had already arranged for a copy of the test to go to Boston. Hopefully we will hear from him today. The original blood vessels that were the problem and why Erik had the surgery are a lot worse. Having the surgery truly saved him from having a major stroke. We just need heavy duty prayers that the transplanted blood vessels continue to grow more and more.
Thursday, September 13, 2007 6:19 AM CDT Yesterday was a very long day and I am happy to say that Erik had the cerebral angiogram and is recuperating nicely. Unfortunately there was some nausea this time after anesthesia. We got home shortly after 7:30 last night. Now we wait for the results of this. Hopefully by the end of tomorrow we should hear something. Tuesday, September 11, 2007 7:31 AM CDT Our Pediatric Cancer Research Fund raiser on Saturday went very well. We did not have the turn out from the community that I thought we would. There is always next year and we are really going to get the word out to every one. BIG TIME! Not sure about final totals yet as money and checks are still coming in. Will update on that by the end of the week.
Wednesday, August 29, 2007 4:58 AM CDT Yesterday day turned out to be a long day and the test was not done. First the angiogram was put on hold as Erik had taken a baby aspirin in the am prior to coming.
Sunday, August 26, 2007 5:26 PM CDT As you can see in the photo above that the Zimmerman's had a lot of fun today. We were asked by this very wonderful man we have had the pleasure of meeting a few weeks ago from Bristol Myer Squib to come and help at the first rest stop for the Living Strong Bike Marathon. What a day. This man is John Finnegan and he was been so wonderful to Erik and the whole family. We were told that Lance Armstrong stopped at this rest stop just to meet Erik. This made his day. Made him feel real special today. Thanks John and thank you Lance Armstrong for both of you showing an interest in Erik. Friday, August 10, 2007 5:47 AM CDT All is well in the Zimmerman house hold. Both Erik’s are working endlessly on the veggie stand we have. Dad just loves raising the veggies and taking care of the stand. Erik Jr. just likes to make the money. All of his working papers are being handed in this morning and he should have an orientation at Stop and Shop next week. He is already talking about direct deposit.
Wednesday, August 1, 2007 6:38 PM CDT Erik cerebal angiogram test has been set for August 28th. Please keep Erik in your prayers for this. This will tell how successful the surgery he had last August actually was.
Friday, July 13, 2007 9:06 AM CDT We heard back from Dr. Scott in Boston. He thinks everything looks good! Funny we heard back from Dr. Scott in Boston before hearing form our own neurologist at CHOP.
Monday, July 2, 2007 6:52 AM CDT We have heard back from Erik’s MRI and there is NO trace of cancer! Praise God! We are still waiting to hear about the MRA part and the blood vessels on the left side of Erik’s brain. Tuesday, June 26, 2007 5:57 AM CDT This update was started on June 25th and finished on the 26th! Thursday, June 7, 2007 7:22 AM CDT Today we are celebrating Erik’s 16th Birthday. How far he has come!
Friday, June 1, 2007 12:21 AM CDT ________________________________________
Wednesday, May 16, 2007 10:04 AM CDT Erik’s appointment went very well on Monday. All are in agreement that Erik will have all of his testing done again in June. He will be having an MRI/MRA of brain and an MRI of spine. This time we pray that they have it all down right and he will have the anesthesia that he needs and not sedation. The study takes about 3 hours. There is a lot they are looking for with the MRA. The question is does he need the same brain surgery on the left side of his brain that he had last August on the right side. This surgery was done in Boston. Erik did real well with that but we are not ready to do that again. His response to this was….. “Oh well it wasn’t that bad”! He is such a champ when it comes to all of this. Never complains about any thing that he has to go through.
Thursday, May 3, 2007 10:34 AM CDT Hello All!
Friday, April 13, 2007 9:44 AM CDT Vacation was wonderful! A nice time away but it always feels good to get home. Every one had a wonderful, restful time. Little Erik’s favorite part of the trip was the evening meal in the main dinning room. Our waiter started right off making a big fuss over him. He loved the attention. He tried duck and lamb. He loved them both. He tried everything which is unusual for him. He behaved like a real gentleman. The week went by so quickly. Saturday was a long day coming home. We had to be off the ship by 8AM. Our plane didn’t leave Ft. Lauderdale until 4PM. We had a stop in Georgia as well where we had to change planes. We finally arrived home around 12:30 Saturday night. Sunday was laundry and sleeping.
Thursday, April 5, 2007 11:07 AM CDT We are having a wonderful time on the cruise.
Wednesday, March 21, 2007 8:29 AM CDT We heard back from Dr. Scott. This is the nuro-surgeon in Boston. His opinion is that Erik’s testing from MRI MRA is that the left side of the brain looks the same. The blood vessels do show some damage but not any worse then the last testing from last April. This is good news for now. They will be redoing the entire testing in June to take a look again. He also said that with these test he couldn’t get a full picture of the right side, but it does appear that there is good blood flow there. That is good news as well. In time Erik will need to have surgery on the blood vessels on the left side of his brain but that is down the road a ways. Praise God! Erik will also have an angiogram (arteriogram) in August at CHOP. This will tell Dr. Scott exact ally how successful the surgery was from last August. Pray! Pray! Pray! Where would we be with out constant prayers?
Thursday, March 15, 2007 7:47 AM CDT Yesterday’s appointments at CHOP went well. It was agreed that Erik would have MRI/MRA of brain and spine again in June, followed by the angiogram in August. This may very well change once Dr. Scott the neurosurgeon in Boston receives Erik latest scans (taken in February) and reviews them. He should have received them earlier this week. I haven’t heard from him yet. Friday, March 9, 2007 6:36 AM CST Dr. Ichord, Erik’s neurologist at CHOP called last night. Beware of doctors calling in the evening. There was good news and bad news from the MRA that was done a few weeks ago. The good news is the right side of Erik’s brain looks better since the surgery. She was happy with progress. Erik is to have another angiogram in August and that will give an even a better picture of the progress of the transplanted blood vessels. The bad news was that the left side of Erik’s brain looks like the blood vessels are getting worse. He will probably have to have the same surgery on the left side of his brain. I thought this may happen but did think it would be this soon. Dr. Ichord is contacting Dr. Scott in Boston and updating him and I will be sending his latest MRI/MRA up to him to view. It will really be his call on what to do. Dr. Ichord is recommending that they re-do the MRI/MRA again in June to check it all out and go from there. Not sure what Dr. Scott will say. I know that when Erik had his last surgery in Boston, Dr. Scott had said that Erik needed that surgery even more then they had suspected.
Thursday, March 1, 2007 10:54 AM CST After waiting a week we finally found out that Erik’s MRI of the brain showed it was stable which means no sign of any cancer! We now have to wait to see Dr. Ichord, neurologist to find out results of MRA. Not sure when Erik will be having MRI of the spine. Dang! It seams like it is always hurry up and wait. I can’t complain at all as Erik is feeling good and doing great in school. Our appointment with the Survivors clinic and Dr. Moshang the endocrinologist will be March 14th.
Thursday, February 22, 2007 6:10 AM CST Erik is home and resting today. Yesterday was a mess. When the scheduling desk ordered Erik’s MRI/MRA they ordered it incorrectly. They were supposed to order this with anesthesia and instead they ordered with sedation. The MRI/MRA was to be about
Wednesday, February 21, 2007 10:33 AM CST Erik is down at CHOP now preparing for his MRI/MRA. It’s real hard setting at work and not being there with him. He is with his Dad and in the best of hands yet it is still
Friday, February 16, 2007 7:35 AM CST We have heard back from the blood work Erik had on the 16th of January. He failed the test which means his body needs to be on the growth hormone for the rest of his life. This would explain why he has been more tired and irritable lately. We have an appointment with his endocrinologist February 27th. He will go over the plans for Erik and the growth hormone. So he will be back to his daily needles.
Tuesday, February 6, 2007 11:00 AM CST Erik’s MRI and MRA have been set for February 21st. He will be having and MRI of the brain and spine and an MRA of the brain. This is such a long study that he will need to have anesthesia for this. It will take about 3-4 hours. Kind of a long time to lie still…..
Saturday, February 3, 2007 9:31 AM CST Hello to all who have come to visit Erik’s web site.
Wednesday, January 24, 2007 8:55 AM CST Hello to all who have come to visit Erik’s web site.
Thursday, January 11, 2007 7:39 AM CST The cold weather has finally arrived. Now we need snow.
Tuesday, January 2, 2007 11:25 AM CST Happy New Year to everyone!
Monday, December 25, 2006 6:52 AM CST Merry Christmas to all who stopped by! Friday, December 15, 2006 1:11 PM CST Another week has gone by and Christmas is so quickly approaching. I love this time of year. We have the tree up and the decorations out. Now we just need to set home in the evening and enjoy it. Tuesday, December 5, 2006 10:25 AM CST The time is flying by and winter is surely here. Erik had is post surgery appointment last Wednesday with the nuro-surgeon. It went fairly well. He has to have his eyes re-checked. Hopefully there was no damage from when the VP shunt malfunctioned. He just doesn’t have the ability to look up any more.
Friday, November 17, 2006 11:26 AM CST Erik is Celebrating 14 years of survivorship
Wednesday, November 15, 2006 10:41 AM CST Our meeting with the clinical physiologist last Monday night went very well. Erik Sr. and I were both impressed with him. More importantly Erik liked him. I am praying so intensely for this to be the ray of hope he needs. He will be going back next Monday night. Monday, November 13, 2006 1:19 PM CST I can’t believe how quickly the time flies. Next week is Thanksgiving already. I love this time of year. It makes me stop and think about all the things that I have to be thankful for. I have my son when so many others do not. Tuesday, October 31, 2006 8:10 AM CST Erik is doing great! He had an appointment yesterday with the gastronologist for his aide-reflux and all is well there. He will remain on the medication that takes care of this problem. He is back to school and although he won’t admit it he loves school. Monday, October 23, 2006 12:44 AM CDT Erik has gone back to school today. Over the weekend he really started to be his old self again. He had some visitors and surprises and it cheered him right up. He was kept busy the whole weekend.
Thursday, October 19, 2006 10:14 AM CDT Erik was released from the Hospital late yesterday afternoon. He is doing pretty good. He is just so sad. Last night he just sat on the cough and didn’t say anything. I am back at work today and Erik called a little while ago and said he is doing some what better.
Tuesday, October 17, 2006 12:34 AM CDT Erik is out of surgery and doing well. He looks better and feels better already. Tuesday, October 17, 2006 0:04 AM CDT We brought Erik in to the ER at CHOP late this afternoon. Thursday, October 12, 2006 9:28 AM CDT Hi All
Thursday, October 12, 2006 8:56 AM CDT Hi All Friday, October 6, 2006 7:08 AM CDT Maine is beautiful with the changing of season colors. So happy to see Dawn, Steven and kids. Wednesday, October 4, 2006 8:23 AM CDT I took Erik for an appointment to see the endocrinologist yesterday in Philadelphia. Once again I am thrown for a loop and in kind of a sad state. Good news is ….. No more nightly needles once he is finished with the growth hormone we have. We don’t order any more…he is finished. Sad news is he is done growing in height. He is now 5’4” and that will probably be it! I had hoped we could get a couple more inches in height for him. Don’t get me wrong I am happy for all that the growth hormone has given him. If only the dang spine would grow more. I know….I should be counting my blessings instead of worrying about things that really don’t matter. He is happy and back in school today. He is doing so good in school and really likes it. Every one at Hunterdon Central High School is being just great with Erik and his needs. We are so pleased with everything there. Wednesday, September 27, 2006 10:47 AM CDT Today I update with some extremely sad news. The little boy, Nicky Hope that I had asked for prayers for lost his battle with cancer last night. He was surrounded by his family at home when he left in the arms of Jesus. Nicholas was only 4 years old and he battled brain cancer over half of his life. Nicholas is at peace now and free from pain. I need to ask for prayers for his mom and dad, Stephanie and Howard Hope. Extra special prayers for his brother Clay who is having a really hard time with losing his brother.
Thursday, September 21, 2006 7:16 PM CDT I have just gotten home from Washington DC. . The time was good and in some ways turned out better then I had thought that it would and yet very disappointing. My disappointment is in the American Cancer Society. I have thought long and hard about what I am about to say. Tuesday, September 19, 2006 5:36 AM CDT I leave for Washington DC for Celebration on the Hill this morning. The excitement is building. Please keep me in your prayers that I can get my message threw. Tomorrow is actually the big day for the activity. Tuesday, September 12, 2006 9:31 AM CDT Erik started High School last week and he did well. He likes it, well as much as a kid that age will like school. I have met his aide and really like her. Today I go and meet all of his teachers and we discuss what Erik needs. This is something they don’t usually do but since I am a pest and keep at them, well we meet today at 1:30. So far he says he hasn’t met any new kids. I only wish it was easier for him to make friends.
Tuesday, August 29, 2006 1:04 PM CDT I am still waiting for pictures of Erik on Sunday at his special day. Erik had a wonderful time. He felt like he was so special! The day was very overwhelming. So many people coming out to honor Erik. People caring enough to help us out.
Friday, August 25, 2006 11:35 AM CDT This Sunday is the big day for Erik. Suzie has told Erik that this is a celebration for him. He is so excited. Every thing will be such a surprise to him and also to Erik Sr. and me as well. I know very little about what is going on for ride4erik. The suspense is killing us. We are so grateful for all Suzie is doing and the many that are helping her. The meaning of the whole day is over whelming. For people to care so much for us to want to help us means so much. I don’t know what we have ever done to deserve such good friends. Monday, August 21, 2006 11:45 AM CDT Erik’s surgery was one week ago today. He is doing fantastic. Matter of fact he says he likes his haircut. The bandages were to come off today but they actually fell of yesterday. He is really feeling great and that is definitely due to the power of prayer. He has to go back in 4-6 weeks for a check-up with Dr. Scott. Dr. Scott….how to explain him. He is a fantastic surgeon but he is also a wonderful man. We were so pleased with his skills and his bed side manner with Erik and all of the family. He said he had never scene a patient recover so quickly from this surgery. Erik is truly amazing. Wednesday, August 16, 2006 4:37 PM CDT Dr. Scott was in today and told us he was going to release Erik tomorrow. He made so much inprovement today in just a few hours that he said he was ready. We will be staying in the hotel one more night just to make sure he is alright. God has so truly blessed our family. Erik's recovery in the past 24 hours has been a miracle. Dr. Scott said he has never scene any one recover so quickly. Erik is truly been so blessed by all of the continued prayer. For this I will be forever grateful. For this I will forever praise God. Norma
Tuesday, August 15, 2006 2:19 PM CDT Erik is doing great! This afternoon he left ICU and is in a regular room. The progress is slow but steady. He is very quiet but we are getting a smile every now and then. I was so worried threw last night but now every thing is going great and we are once again blessed by God. Thanks you every one for you steady and continued prayers. There were some very weak moments yesteray and I will admitt that I was so very scared.
Monday, August 14, 2006 3:59 PM CDT Erik was out of surgery around 2PM. Dr. Scott came out and talked to us after. He said that there was almost no blood flow on the right side of the brain and he is amazed that he didn't have a stroke. The surgery was the best thing we could have done. He also said that during the surgery Erik's heart rate and blood pressure dropped very low several times. Praise God for his presence, Erik made it threw the surgery. The next 24 hours a critical. Once he gets threw that things should start to look up pretty soon. He will have a lot of restrictions for about six months but he will be out of the danger that he is now. Please pray for Erik's good health for the next 24 hours and for always. I have to admitt that I lost my strong positive attitude for a while this afternoon when there was danger. It's back now and cancer and the effects of treatment will not get me down. God is forever present!
Monday, August 14, 2006 7:12 AM CDT As the thunder rolls---I say amen---He is with me! Saturday, August 12, 2006 2:39 PM CDT We arrived safely in Boston around 3. Saturday, August 5, 2006 5:22 AM CDT One week from today we leave for Boston for Erik’s surgery. The time has flown by and he is now asking so many questions. He wants to know how much he will hurt after surgery, what kind of pre-med he will receive before anesthia etc.. (I know I spelled that one wrong). It’s hard answering all of his questions honestly. Not trying to scare him. He has become extremely moody as well. We have been trying to keep him busy. I just want to jump ahead two weeks. It’s been so hot and he has been spending a lot of time in the house. He loves to play basketball and it’s been to hot for that. He won’t be able to do any thing physical for six months after the surgery and that he is truly going to miss.
Tuesday, July 25, 2006 10:31 AM CDT Three more weeks and Erik surgery will be over and he will be recovering.
Monday, July 10, 2006 12:32 AM CDT The time is flying by so quickly. Just a month left until Erik’s surgery.
Tuesday, June 27, 2006 9:53 AM CDT Erik’s graduation was absolutely wonderful. The whole family came to see Erik graduate. We were all so proud of him. At the end of the ceremony each child took a red rose to there mother while they finished singing “Because You Loved me. Such special memories were made of that special evening.
Monday, June 12, 2006 11:33 AM CDT Erik had a wonderful time on the Dinner, Dance Cruise Friday night. It was very exciting to see all of the girls and boys showing up in suits and beautiful dresses. They really go all out for this special occasion. They didn’t get back until around 11:30PM. He had come home and when right to bed. All he would say that night was…it was fun but the food stunk. For Erik if it’s not ribs, wings or chicken fingers it isn’t good food! He did look very handsome. I am waiting for received more pictures back. The 20th is graduation and then his party on Friday night the 23rd.
Wednesday, June 7, 2006 10:09 AM CDT Happy Birthday Erik
Tuesday, May 30, 2006 9:43 AM CDT I spoke with Gail at Dr. Scott’s Office this morning and Erik’s surgery is scheduled for August 14th. He is to be admitted on the 13th. I believe we will be leaving for Boston on Saturday the 12th. Saturday, May 20, 2006 4:48 PM CDT We are home and recovering from our Boston Trip. We left for Boston Thursday around 10:30 in the morning. We got there around 4 and found the hospital and then went looking for a hotel room. What we didn’t realize was it was graduation time in Boston. No place in the city had any vacancies. We had to go 25 miles out of the city to find a hotel.
Friday, May 12, 2006 11:19 AM CDT Happy Mother’s Day to all!
Tuesday, May 9, 2006 12:27 AM CDT I just heard from Dr. Scott in Boston. His words were: Monday, May 1, 2006 7:55 AM CDT Tomorrow at this time Erik Jr. and I will be on our way to Disney World. We are both excited. It will be a long day and what wonderful memories we will share of this very special gift from the Sunshine Foundation. Monday, April 24, 2006 7:04 AM CDT We have heard the good news that Erik is a candidate for the surgery. I am in the process of having his latest testing sent to Dr. Scott in Boston. We have been told in detail what this surgery is all about. Clear on what they actually do. Not what we were told by the neurologist. We both feel a lot better about it all now. There is not a lot of scaring after the surgery. Two tiny spots that the hair will cover. We were real worried about the things that Erik would be left to deal with after the fact. Feel better about that part now. Thursday, April 20, 2006 7:06 AM CDT Although we had a lot of questions answered yesterday, we did not get an answer to the one we went for. Is Erik a candidate for the surgery? He had the cerebral angiogram done on Friday. Yesterday went we met with Dr. Sutton he did not have the results yet. They had not been put on line for him to access. Friday, April 14, 2006 8:14 PM CDT We got home from the hospital around 5:45. We arrived at CHOP at 8am and they took Erik in for the Angiogram at 9:30. He came out of the test at 11:10. From there he went into the waiting room care area for these kinds of tests. He had to lay flat on his back for a full six hours before he was allowed to get up. He was sedated so heavily that he really didn’t wake up until around 3:30. They did this because from where they did the test……They had stuck a catheter in the ground area and ran this up into the neck area. This is a main artery and he had to lay flat on his back so that it wouldn’t start to bleed. He did really well. At 4:40 he was allowed to set up a bit. Then at 4:50 they sat him so his legs would hang over the side of the bed. At 5 he was allowed to stand. He was very dizzy. He was a real trooper. We are so proud of him. We arrived home around 6:45. He went to bed and went to sleep. Hopefully by tomorrow he will be back to his normal self. He can’t to anything physical for a week. He is very disappointed as he can not play basketball with Kevin on Tuesday. Kevin is the youth director at our church. He has spent a lot of time with Erik and has been a blessing to our family. Kevin said they would just do something else on Tuesday. Wednesday, April 5, 2006 6:16 AM CDT We heard late yesterday after noon that Erik’s angiogram is scheduled for April 15th. Good Friday. To me, that means Thursday, March 30, 2006 1:39 PM CST We heard back from Dr. Ichord threw e-mail. This was her response. We are speaking on the phone with her again tonight with A LOT of questions.
Tuesday, March 28, 2006 10:31 AM CST We took Erik in to Philadelphia to see the neurologist. There is a team of doctors and neuro surgeons that are going to be having a meeting tomorrow about Erik. They will be going over his history past and current. They will decide if Erik is a candidate for surgery. There is a new surgery that they can go in and replace the damaged blood vessels with other healthy blood vessels from the brain. We will hear on Thursday when they come up with. I pray that he is a candidate for this. The only other option is for him to take medication that changes the blood pressure to make the blood flow better. We don’t want him on medication as that can always lead to other problems. He doesn’t really understand what is going on right now. We will tell him more after we hear from the doctors on Thursday. I just wish I could make things all better for him. Thursday, March 16, 2006 1:38 PM CST Just an update to let every one know that Erik is doing real well. We see the neurologist on the 27th. I started to poke around on the internet about this and then stopped. It’s in God’s hands. I decided not to borrow worries.
Friday, March 3, 2006 8:39 AM CST Erik went on Wednesday for his pulmonary function testing. All was well! His breathing and lungs are fine and showing no damage from the radiation he received almost 12 years ago. It is always calming to hear good test results.
Thursday, February 23, 2006 7:29 AM CST Doctor has finally called
Friday, February 10, 2006 8:54 AM CST Looks like we will be getting some snow! Friday, February 3, 2006 6:24 AM CST This past Monday we had our meeting with the East Amwell child study team. This is about Erik’s placement for High School next year. We were hesitant about his going to Hunterdon Central next year as it is such a big school. We were looking for smaller in number of students and size. After looking around HC would be the best school in education. They have so much to offer. So we will go with that as long as they will give us the things we want there. The BIG meeting is on Monday the 6th. Please pray for our success in getting the best for Erik. He can do very well and be successful as long as he had the tools he needs.
Friday, January 20, 2006 10:40 AM CST Erik Jr. and I spent the day in Philadelphia yesterday. All in all it was a pretty good day. His first appointment was to have an ECHO and an EKG. Next was an appointment with Dr. Fischer in Long Term Survivors Clinic. There was one thing that upset me so much. He asked me how his second Pulmonary Function appointment turned out. Erik has only gone to the Pulmonary Function Lab for testing once. That was two years ago. The doctor’s question was…..but he was supposed to go back in a year. Nothing was real wrong with his first testing but they were questioning something and wanted him tested again in a year. This would have been last year. Yesterday was the first that we heard anything about there being a possible problem. Dang! I do my best to keep on top of every thing. It’s kind of hard to keep on top of something when you were never told there was something!!! Friday, January 13, 2006 9:12 AM CST The days just seam to really fly by. I still have not taken down the Christmas decorations. Last Saturday we surprised Jason with a Birthday Party with his friends. My baby is now a teenager. 13 years old. We can hardly believe it. We took the kids out for pizza and then a movie. Just the look on Jason face was wonderful. He was truly so surprised. Monday, December 19, 2005 7:23 AM CST Merry Christmas Everyone
Friday, November 18, 2005 12:58 AM CST It was 12 years ago yesterday that Erik was diagnosed and our world changed for ever. We have so much to be thankful for. Things seam to be looking up for Erik right now. He is doing well with the Karate/Counseling. He came up with an idea to start a basketball team of his friends. We are really proud of him. He still has a long way to go with making friends and adjusting to people that he doesn’t already know. We had our teacher’s conferences last night. Good reports on both of our sons. Friday, November 4, 2005 9:42 AM CST Erik is still going to Karate and liking it. Thank God! They have been very good to him and I believe that he is starting to make friends with the other kids. He is also staying after school for intramural basketball. That he loves. The only problem he is having now is the regular 8th grade gym. He doesn’t want to try and of the new activities. It seams that the gym teachers see more potential in him they he is giving himself credit for. He is on an 8th grade field trip today that is all physical activity. He was refusing to go but Dad got him to the school and on the bus. He is so much in my thoughts today. I pray that he comes home and at least admits to liking it. It would have been so easy to just keep him home and not push him. Mom is just too soft when it comes to Erik. I just want his happiness. Wednesday, September 21, 2005 7:48 AM CDT Since my last updated Erik has been to see the ENT at CHOP. After testing it seams that his hearing is some what better then it was six months ago. This has been such a roller coaster for him. The original hearing loss he has had was caused by the chemotherapy he received during treatment in 1993 for his cancer, medulloblastoma. The up and down levels he is dealing with now is being caused by the radiation he received in May of 1994.
Tuesday, September 6, 2005 9:53 AM CDT Here we are at September 6th. What a wonderful weekend we had. The kids go back to school tomorrow. I really think they are both looking forward to it. It has been such a busy summer.
Monday, August 15, 2005 9:26 AM CDT Erik’s appointment in the Long Term Follow Up Clinic went well. I had questions about his back and posture and unfortunately I was right. He needs to see the orthopedic specialist, Dr. Dorman soon then he was suppose to. He is now showing signs of scoliosis. We knew this may happen as he grew. This is another effect from the radiation he received to his spine. In all other area he is doing great! All his blood work came back will great results.
Tuesday, August 2, 2005 6:52 AM CDT When Erik went for his check up with endocrinology we were told, “Oh didn’t you get our card….Doctor Moshang is on vacation this week. You were supposed to re-schedule.”
Tuesday, July 26, 2005 11:36 AM CDT The results came back from the moles Erik had removed and all is well. Praise God for his constant watch over my child. Sunday, July 10, 2005 7:37 PM CDT Well we are at the end of another weekend. It was a really beautiful weekend. Erik Sr. took me out for dinner for my birthday. Just the two of us. It was really nice and one of the best birthdays I have ever had. Wednesday, July 6, 2005 8:39 AM CDT We all survived the 4th of July weekend. Jennifer and Brian’s wedding reception picnic went well. It is always nice to get all of the family and friends together. Tuesday, June 28, 2005 7:49 AM CDT The kids sure are thankful for the pool now that we have started with the very hot weather. They are in daily and have had lots of friends over. This is good for Erik. I think we are making a little progress with him in one area. He wants to always stick to the same kids. I think he is afraid to make new friends. He can’t hear well and he is always on guard. Always thinking that people aren’t going to like him or pick on him and make fun. My heart breaks for him but he has to realize that there are people out there that really want to be his friends. It’s hard but I think he is starting to realize this. Starting to join in when Jason has friends over instead of going into his room.
Friday, June 17, 2005 10:12 AM CDT We went this week for Erik's IEP for next year at school. His teachers think that Erik is "clinically depressed". He is angry at his situtation and differences in life. Now that we have started talking about it we (Erik's Dad and I) can see it. The angry attitudes at times. Usually directed at me. He is going to see a psychiatrist for an evaluation. Just to see him smile it worth every things. We love this child so much and are always striving for ways to help him feel good about himself. Other then that, his education and every thing at school it going well. He is really maturing and growing up in his actions. Monday June 13,2005 Erik went to see Dr. Potsic today. He is the ENT specialist at CHOP. Erik hearing is the same and will be retested and see the Doctor again in September when school starts. He needs to wear his hering aids more for better understanding. Friday, June 10, 2005 6:28 AM CDT Erik had a wonderful Birthday. We had a family picnic/party on Sunday and on Tuesday he went to Best Buy with Dad to check on refrigerators for his room. A small one of course, but he has wanted one for quiet some time. We didn't realize how much the small ones were so he needs to save a little longer. Erik is still having problems with his hearing. Been very quiet again. Of course the heat doesn't help either. They need to get out of school and be able to swim during the day and just have some fun.
Monday, June 6, 2005 6:20 AM CDT It's sure was a beautiful weekend. We had a Family Birthday Party for Erik last night. He will be 14 on Tuesday. He is saving for a small refrigerator for his room. (???Go figure.)
Thursday, June 2, 2005 4:43 PM CDT So glad we are finally getting some really nice weather. The kids are out side more now, still playing basketball. They both love it.
Wednesday, May 25, 2005 11:04 AM CDT Yesterday Erik's teacher, social worker and I went to a work shop for Long term survivors of childhood cancer. I am very grateful for there attending with me and the love and interest they show in Erik's future. Almost every thing said at the work shop I had already heard. I am looking for so much more information then I seam to be able to find. I so often hear the words ...."But we just don't know". It is so flustrating. Monday, May 23, 2005 9:44 AM CDT We are recovering from The Relay. The past three years I have chaired this event with Erik SR. This was the first year to kind of set back and enjoy. So many caring and loving people are involved in this. So many of my very dear friends and there families. I want to thank them all so very much. For them to do this, is to care so deeply about finding a cure. So many people have lost in this horrible disease called cancer. Erik and Jason camped out with there friends. Sami Gray and her parents came to celebrate. It was wonderful to see them. Sami is such a beautiful little girl.
Friday May 20,2005 Erik had an appointment today at CHOP with the dermatologist. He goes yearly for check ups. Erik has many moles in the radiation site. The doctor decided that he needs to now remove two of the moles. This will be done in July. They are just starting to rise and change color. This should be a simple procedure. Tuesday, May 17, 2005 12:13 AM CDT Today Erik is celebrating 11 years ago that he finished treatment and has been cancer free. He has come so far in the past eleven years. Erik has grown and learned and become quiet a wonderful young man. He has a great love for animals, especially his dog Hunter who sleeps with him every night. He likes to go to the near by stream and catch turtles and fish.
Tuesday, May 10, 2005 9:04 AM CDT After seeing Dr. Potsic yesterday at CHOP he is being started on a different kind of steroid. A milder dose then he received in February. He also has a cold now so not feeling so well.
Monday, May 9, 2005 11:16 AM CDT Erik has had a slight hearing loss from the chemotherapy he received over 11 years ago. This does require him to wear hearing aides for school. For the past few months Erik has been having additional trouble with hearing in his left ear. They tell us that it is caused by the radiation he received 11 years ago. The first time this happened in January he was put on steroids. The steroids were very hard on him and he did become some what depressed by all that was happening. After a while the hearing did return but they were concerned that this would happen with his right ear as well. For the past two weeks his hearing has been effected in both right and left ear. It is very flustrating for him.
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Erik is doing very well in school. He has still not made the change from Stop & Shop to Giant. Stop & Shop is really dragging their feet on this. Because they are owned by the same company they have to transfer him to Giant. I just want him out of there. Without going into too much detail the treatment he is receiving from a few is terrible. The first year and a half all was well. Then some of the managers left and new ones came on and it has been real hard for him. It’s not that we want any special treatment for him as it was not that way for the first year and a half. I have documented everything so we will see once he is transferred. There is one guy that is always yelling at him. An assistant manager. I mean YELLING at him. There is no reason for this either. I mean he brings carts in and empties garbage. One day he said “”””Oh I could just kill you””””” now this is an assistant manager. Dad went in with him about that they told Dad that oh that’s just how he is he yells at everyone like that. My questions are…. Why the hell is he an assistant manager? This has been going on for months now and we keep telling Erik just deal with it for a little while longer because you will be leaving for a vet’s assistant position soon. It was real bad about a month or two ago and I had just had it and I called him and ripped him about the way he treats Erik. I know I should have done it but I was so mad. That’s when we started the process for transferring him to Giant. Jason works at Giant and they are so good to their employees. Of course that’s a two way street as well. You have to respect your management. I have been at Kooltronic for almost 29 years and I know all about it.
Erik and I are doing well. We are decorating for Christmas and we both seem to be a little more excited this year than in the past several years. I truly count all of my blessings every day. I know that I have received the greatest gift of all……my son’s healing.
Thanks for listening to me….
There are so many people that I am grateful for and far too many to name.
I am feeling very blessed today.
Ride4Erik 3 went well. The weather was really nice but we still need to get more of the public out to this event. Not sure why it isn’t taking off more. Price was extremely reasonable…$10.00 for all you can eat and entertainment included. Jeff Kline did a fantastic job with the entertainment again. Absolutely perfect! We are very lucky to have him with us. So many people working so hard….We are grateful to all involved. We have one more event this year and that is a Chinese auction on November 7th at South Hunterdon High School. Door open at 1PM and numbers will be called at 1:30PM.
Erik is doing well. He went back to the dermatologist and they decided not to cut any more of the area that the mole was in now. They want to wait 6 months and look at it again. I sent reports to his oncologist at CHOP and they agreed this was a good decision. Erik is a senior this year and in his second year of Poly Tech. He is in Pre Vet classes and he is doing extremely well. He had his last IEP yesterday and they have all kinds of plans for Erik this year. Later in the year he will be going out to work in a vet’s office for a few hours a day. He is excited and we are thrilled in his success. Success that has not come easy for him. He works extremely hard at everything he does. We are waiting for his senior pictures to come back. They turned out fantastic. Can’t wait to post them.
Erik is still at Stop & Shop. The road has been a little rocky lately. They truly do not understand the whole idea of Erik’s ability to become exhausted more than the average person. I have told them, I have given them documentation and they still do not get it. He can handle the four hours a day. They keep wanting him to work more than the four. After about the 5th hour he is done. We have been working on trying to get him transferred over to Giant. Giant is a lot closer for us to drive him and they are also a much nicer bunch of people. Management there has a more caring attitude for there employees. Jason has been there several months and the difference between the two places is like night and day.
Jason is doing very well in school this year. I have not had to be the big pain yet this year with getting him to do his home work. He will be going for his license in January. How the years have gone by so quickly. Jason is getting ready to take his sat’s He has decided he wants to be a gym teacher. I thought he would make a wonderful police officer but he has poo- pooped that idea. We’ll see as he still has a lot of time. He is truly growing in to a wonderful young man that we are very proud of. His ability to see the good in all and his extremely honest nature.
Next week is Halloween and then Thanksgiving. We will be having our thanksgiving dinner this year at Jennifer and Brian’s house. Real happy about this! Our family seems to be getting smaller. It’s just not the same without Nancy and Bill being here and we miss Dawn and Steve (kids) as well. The Holiday celebrations used to be so full of activities. It’s begun to take a slower pace. I guess that is life as you get OLDER.
Well I will close for now ….. Just know how much I appreciate everyone that comes here to check in on my son and my family.
We received word from Dr. Scott in Boston and he said everything looked great. Clear and stable. When you have had cancer those two words mean everything. The blood vessels on the left side of Erik’s brain are totally unchanged. This IS fantastic news. The right side is doing well as well. The surgery Erik had in Boston three years was somewhat of a success…just now as successful as they had liked. All and all Erik is doing well. No more MRI/MRA’s until next summer.
Erik went to our family doctor about three weeks ago, Dr. Bernard in Flemington. She noticed a few moles on Erik’s back. One was in the line of the radiation that Erik received all those years ago. Thank you so much Dr. Bernard….. We took Erik to the dermatologist the beginning of last week. This doctor thought the mold should be removed and she did so. Well…she called today and said that the biopsy of somewhat off. It was not cancer but a pre-cancerous result. He needs to go back and have the area dug in to more deeply. Praying that this turns out to be one more procedure and that’s the end of it. Erik will not be happy about this. For whatever reason having a mole removed is the one thing he complains about. He thinks this REALY hurts. I agree it does but with all he has been through for this to be the one thing he complains about….amazing young man.
September is Childhood cancer Awareness month. That is why we have our Ride4erik event in September. I have known what this month is for many years. I have tried in past years to promote it more in our area. A dream to have it as popular as October being breast cancer awareness month. I hate cancer…every kind of cancer but to me there is always something about seeing a child suffer and the parents of that child suffering that just tear my hears out. Of course I have traveled this journey so it is very deep. This year all money raised goes to Cure Search…..this is an organization where there are no paid employees. I do support the American Cancer Society but there are so many LARGELY paid employees that you think twice. I do support them and what they are trying to do but Cure Search is totally run by many people and doctors that are totally donating their time. Support Ride4Erik for pediatric cancer research. Come to the event. It’s not just a motor cycle ride and a bicycle ride it’s for everyone. Last year Joe Gherardi and friends took some of our little survivors for motor cycle rides…you should have seen the smiles on those kids’ faces. Absolutely amazing! For more information just give me a call. 609-397-8892 home e-mail enzimmerman@comcast.net or norma@kooltronic.com..........
I belong to Face Book…..addicted I should say. I have been posting a picture of Erik and his journey everyday for the month of September. Well I made it to day 4 anyway. I plan to keep it up.
Well I need to go pick Jason up from work and then Erik JR. up from work and then we will be going to Cheeburger Cheeburger in Flemington.
Have a great Labor Day weekend. Stay safe
Two more weeks and school starts…..can’t wait. This will be Erik’s last year of school. He had his senior pictures taken over the summer and I placed my order last week. They really turned our great.
I/we have been working long hours on our event for September 19th. “Caring for kids with cancer”
It will be at Valley Road Park just outside of Lambertville. There is a motor cycle ride and a bicycle ride in the am and our event starts at 12noon until 5pm. We made the admission real reasonable this year at $10.00 a person and under 6 are free. This includes all the food you can eat and all the entertainment arranged by Jeff Kline. We have so many fantastic people that are working so hard to make this event a huge success. Invitations have been sent out to all of our little area survivors and I am still looking for gifts for each of them. I am truly excited about this year’s event.
I was filling out some paper work yesterday for Cure Search and it’s about being a media family. One part sticks in my mind very much. Sometimes I don’t know why people do not slow down and think, think, think and listen:
I would love to educate the public! Sometimes I feel like yelling at the top of my lungs….. Listen to me ….This could be your child. It happened to my son and could happen to yours or a child you love dearly. The things I have seen in the past 16 years should not happen to any child. We all see the TV shows and think…..oh that only happens to other people. Yes it does and that other person was my child. How do you get people to realize that it could happen to them and still can. You may have healthy children today but who knows what tomorrow will bring.
So all good news here
I have been working endlessly on our September event. Anyone in the central jersey area please come and support this very worthy event. You will get to meet some of our area survivors…our young hero’s
September 19th at Valley Road Park in Hopewell twp. Just off of Rt. 29 going out of Lambertville. It’s next to Bell Mt. Ski area and Howell Historical farm. It’s just $10.00 to get in and that’s for all your food and entertainment. Please show you care….BE there. Community event starts at 12noon and ends at 5PM
This summer is really breezing by. Both Erik and Jason are now working. I’m real proud of both of them. I can’t believe how they have grown up before my eyes. I need time to slow down a little.
We are working extremely hard on our yearly event….Ride4Erik. We have made the price to get in very affordable this year. We work very hard to get everything donated so all money goes to our cause. This year we are supporting Cure Search. Well anyway it will be $10.00 to get in and that’s all of your food and tons of entertainment. There are so many great volunteers supporting this. We just need to keep pushing forward with getting the word out.
I will update more next week after we get all of the test results back. He has an appointment in the clinic on Wednesday the 12th.
Thank you for checking in on Erik and for caring…..
We were going but had to cancel at the last minute was it was real expensive to park and the hotel and food. Next year I will be there with a few of my friends that share my need to promote awareness to childhood cancer.
I was to speak to a member of congress and I would like to post some of my thoughts that I had for that day.
Thanks for listening
Childhood cancer has been a huge part of my life for the past sixteen years. When my son was dx’ed with medulloblastoma at the age of 17 months old our lives began to spin out of control. I can remember standing at my sons crib just watching bags of chemotherapy drugs dropping in to his chest through his brovac. Watching him being filled with poison with the hope that it would save his life! That lasted 14 months with many blood and platelets transfusions just to keep him alive through all of his treatment.
Then just prior to his 3rd birthday he received six weeks of radiation to his brain & spine to finish his treatment. This, we were told is what saved our sons life. Erik just turned 18 a few weeks ago. To my husband and me, it is by the grace of God and many skilled doctors that he was cured. Still today, 16 years later I witness many babies still dying from the same type of cancer Erik had. I am always asking myself WHY! Why was my son saved and yet so many are still dying. I can never do enough in this life to give back what I have received. Not ever.
Yet, there is another side to all of these many blessings. There is the side that is now my son’s life. I try to tell him how blessed he is and how fortunate he is and it is so very hard for him to understand how he is lucky when he is not the person he would have been if not for cancer. The treatment that saves a life has done so much damage. How do I tell him how lucky he is when he sees the differences between himself and other his age? The differences in height, and his own permanent hair loss. How is he lucky when he has no real friends to hang out with? No one picks on him but there is much pain in being over looked and ignored because you are difference. To have spent three years now in High School and has still not found a friend or a girl to talk to. How do I make him understand how lucky he is when he has to work twice as hard in everything he does and yet he still cannot keep up. I am constantly searching for the right words to help him to understand. The last heart break he has had is in finding out he will not get his driver’s license. He took the written test and did very well. He was to go for the driving part in July. I did some searching and found a rehabilitation center that evaluates people with disabilities for a driver’s license. They evaluated Erik and they recommended that he not get his license. This is probably the biggest heart break he has had in quite a while. We are renewing his permit and we will keep practicing and I do believe in miracles. His problem is his reaction time to things. It’s not there.
So you can see why he finds it hard to believe how lucky he is.
Happy Friday! A three days weekend coming up.
Two weekends ago we had our CROP fundraiser. It was a fantastic day and we raised over $5000.00
We were all thrilled …. So we are off and running for the year. Our next event will be in September. We have booked Valley Road Park again this year for the 27th. This will be a Sunday. We are already starting to pray for no rain. We will be having our first meeting on Tuesday May 26th. Last year there were so many fantastic, generous and hard working people putting this all together. I am thrilled to find out that everyone is coming back this year. I am so thrilled and amazed by so many wonderful people that want to help in this worthy cause.
The kids are counting the days until school is over and I can’t blame them. Erik and Ben are still taking care of their chickens and are hoping they start to get eggs in the next few weeks. I can’t tell you what a blessing Ben is for Erik. He is so happy having someone…a good friend to work with and they plan on making tons of money. They are also planting there garden now as well.
Erik will be taking Pre Vet in Poly tech again next year. It’s hard to believe he will be a senior. I can remember praying for the day that we would see our son survive his treatment for cancer and be cancer free…never thinking beyond that point. He has made so many accomplishments in the past several years. To say the least, we are so proud of him. He will be turning 18 on June 7th. He is telling every one he wants Best Buy gift cards so he can get surround sound for hi s bedroom. Ben has also been taking Erik fishing. So now we will be getting him a fishing pole. Ben has been so good for Erik and we are so grateful for him. This is another thing that Erik is learning and really loves.
Hope everyone has a wonderful weekend!
In August we will be gearing up for all of Erik’s yearly appointments. MRI and MRA etc.
Norma
Two weekends ago we had our CROP fundraiser. It was a fantastic day and we raised over $5000.00
We were all thrilled …. So we are off and running for the year. Our next event will be in September. We have booked Valley Road Park again this year for the 27th. This will be a Sunday. We are already starting to pray for no rain. We will be having our first meeting on Tuesday May 26th. Last year there were so many fantastic, generous and hard working people putting this all together. I am thrilled to find out that everyone is coming back this year. I am so thrilled and amazed by so many wonderful people that want to help in this worthy cause.
The kids are counting the days until school is over and I can’t blame them. Erik and Ben are still taking care of their chickens and are hoping they start to get eggs in the next few weeks. I can’t tell you what a blessing Ben is for Erik. He is so happy having someone…a good friend to work with and they plan on making tons of money. They are also planting there garden now as well.
Erik will be taking Pre Vet in Poly tech again next year. It’s hard to believe he will be a senior. I can remember praying for the day that we would see our son survive his treatment for cancer and be cancer free…never thinking beyond that point. He has made so many accomplishments in the past several years. To say the least, we are so proud of him. He will be turning 18 on June 7th. He is telling every one he wants Best Buy gift cards so he can get surround sound for hi s bedroom. Ben has also been taking Erik fishing. So now we will be getting him a fishing pole. Ben has been so good for Erik and we are so grateful for him. This is another thing that Erik is learning and really loves.
Hope everyone has a wonderful weekend!
In August we will be gearing up for all of Erik’s yearly appointments. MRI and MRA etc.
Norma
Sad news first, Erik went for his driving evaluation last Friday afternoon. It was advised that he does not get his driver’s license. He is devastated to say the least. His brain works well on one thing at a time. Driving is not like that. He drives very well, but what about the stop sign and intersections. It’s just another thing that he can’t do. We will get through this moving slowly.
The good news is Erik and his friend Ben have started a garden and they have also bought over a hundred baby chicks. They are going to raise chickens and sell the eggs. The two of them are very ambitious and I know they will be very successful.
We are working very hard right now on starting to put together the September event. Our first meeting is to be tonight. I am also working on our May event. This a 12 hour CROP at the Lambertville Fire House.
Well that’s about it for now. My mind is so much on Erik and the whole driving deal. Please pray for Erik and for him to find and concentrate on his good qualities and the things he can do.
Erik will be going for his driver’s evaluation on April 17th. He went in February and they only did part of it. They wanted to know where his glasses were. Well he didn’t have them because he doesn’t wear glasses. Ten years ago when he had his cataracts removed he did wear glasses for a short time. He had implants put in and it was more a protection then anything at that time. He wore them for about a year and that was it. We had to get all his records straightened out to read correctly. For his sake I hope the evaluation turns out good and in his favor. He will be one heartbroken young man if they say he shouldn’t drive.
Erik has also started back therapist. He asked about it and we figured that is a good sign. He just has so many negative feelings about himself. For instance he will not take his hat off. Erik’s hair is very thin on the top. I have checked out all areas to try to help with this but because of the radiation the hair follicles are dead. There are many more things and I am sure hoping the therapist can help him see the great young man he is. We are all different in so many ways.
Jason now has his drivers permit as well. He just finished 6 hours of driving lessons and he can drive with either Erik or I in. I truly don’t know how the years have gone by so quickly. Jason is also looking for a job and they are real hard to come by.
I am working on our next fundraiser. May 9th will be our crop at the Lambertville rescue squad. Any one that does crafts please let me know if you would like to come. It runs from 9am to 9pm on the 9th of May. I have also been working with Jeff Kline trying to put together a battle of the bands for this November. He is so very talented and knows so much about doing these things. I/we are so happy to have him helping in all the ways he does.
I have to start thinking ahead a bit to the summer. In June my Dad will be 85 Erik Jr. will be 18 and my brother will be 60. A lot of special birthday’s there.
Please keep all the kids in your prayers that are battling this horrible disease of pediatric cancer. It’s on my mind always…..there needs to be a cure and better treatment.
Norma
All is well in the Zimmerman household. The past month has been a little hectic but we go forward. A month ago DYFS called us to see if we would be willing to take a 17 years old girl in. She needed a safe place while she received counseling with her parents. We have known this young girl for …probably around 5 years. Our hearts said yes! It was to be a week or two but turned in to a month. She left to go home with her Dad last Sunday. My heart has been heavy. I wish there was more we could have done for her. There is so much good in this young girl. In grammar school she befriended Erik when so many did not. She made a difference in him. We have grown to love this young lady. However the way she has been raised has lead to so many problems in her growing up. She knows right from wrong but the right is so very clouded. There is a lot of prejudice in her home as well. I just wish there was more we could have done. She had to go back and receive four more weeks of counseling in the home with her dad. Please pray for this very misguided young girl. This is the year she needs help. In December when she turns 18 she is able to go out on her own and I am afraid for her and the roads she will take.
Erik has started back seeing a physiologist. For the past few months he has come to me several times with concerns about his looks and why girls don’t like him. My hear breaks for him and the ways he is different. He has such a beautiful heart and soul. As he is maturing he is noticing more ways he is different. He goes next Thursday to be evaluated at Moss Rehabilitation for his driving skills. This splits me completely on how to pray. If after the evaluation it is found that he should not drive, his heart will be broken even more. How do I convince him that he is blessed to be alive? That the things that were done to him are what saved his life. How is he to understand that there are so many children that did not survive? They go through hell in treatment and lose the battle anyway. This is what gives me the energy to do all the fundraising for pediatric cancer research. I hate cancer! In the on line groups I belong to and the sites I visit there are innocent children dying every single day. So many of them! Sometimes you just want to run away from it all but I just can’t.
This is my world and what is extremely important to me.
A three day weekend coming up……fantastic! I plan on cleaning the house and getting things done.
The only thing on and agenda is my Grandson Spencer will be 5 on Sunday. Boy, have those years gone by quickly.
Please pray for all the innocent children suffering through treatment….
Norma
Within a week or two we will be going to Philly for Erik to present the check for our entire fund raising for 2008. 2008 money raised goes to the Pediatric Brain Tumor Consortium at CHOP. For 2008 we will be able to give PBTC $15,000.00 donation. I am very happy about this. We have also helped four families with in the year as well. This is leaving some money in the bank for any family that needs help as well. We start our fundraising again in May with an all day crop. This was very successful last year. So anyone that loves doing crafts and wants uninterrupted time to work on them just let me know. The cost for the day is $45.00 and that includes three meals, a large space to work on your crafts, door prizes and a large Tricky Tray to take chances on. There will also be a massage therapist there afternoon until evening doing massages. Go to http://cropperscareforkids.blogspot.com and check it out.
So now we have two teenagers applying for their driving permits. I can never figure out how quickly times goes by. As soon as we have the paper work all straighten out for the permits we can call the driving school Erik that works with kids with disabilities. He’s excited and I’m scared.
There are three families I would like to ask for prayers for. Three little boys that lost their battle with cancer last week. Things need to change. We need more research to find a cure. There are still so many kids dying from cancer. You hear a lot about cure rate. I have learned that when they talk about survival they are talking about a possible five years. By them I mean literature I read on line. Five years is not good enough. These children go through hell and then still die. Why!!!! I plan to work extremely hard in 2009 raising money for research and to support these families in our area.
Dante www.carepages.com sign on trooperdante
Coleman www.carepages.com sign on colemanscott
Ben www.caringbridge.org/visit/towne
Right now I could list 50 other sites I follow of kids battling cancer.
AJ's dad and all of us cancer parents want to ask him this :
"Childhood cancer is the #1 killer disease of our kids: 46 are diagnosed & 7 die each day. Additional funding is needed for research into better treatment options. Will you include funding in your budget to prioritize research to save our kids?"
Please VOTE for OUR question !!! DO NOT WRITE UP ANOTHER QUESTION AND DO NOT COPY AND PASTE THIS ONE AS A NEW QUESTION !!!!! or we will not make it to the first top 10 united under one question !!! This is very important !
To vote it to the top,
1 - go to: http://change.gov/page/content/openforquestions20081229/
2 - register
3 - search for childhood cancer
4 - to vote for it, click the checkmark, NOT the X
Tell everyone you know to vote for it. "
Thank you every one ...
I will update again before Christmas as I have other things to share but for now I am totally enjoying his success.
We are having another fundraiser this weekend. We will be having a Tricky Tray on Saturday at South Hunterdon High School. Some call it a tricky tray and some a Chinese auction. Whichever it starts at 1PM and all money raised goes to our pediatric cancer research fund. This will be the last for 2008. In January we will head to Philly with Erik and a check for the Pediatric Brain tumor consortium at CHOP.
I think we will be supporting Cure Search for 2009. Great organization. This is the information I have found out about them verses St. Jude’s.
CureSearch for a number of reasons. They are the largest childhood cancer
Foundation, supporting more than 90% of America’s cancer kids and
Hospitals. They have repeatedly (last 7 years in a row) received 4 out of 4
stars from Charity Navigator (<1% charities can claim this), 95% of the
money goes directly to the kids (compare with < 3% by American Cancer
Society, 16% by St Jude's). It's not as well known as some of the others
because 95% of their money goes into the main focus and little left for
advertising. This association includes 5,000 dedicated experts in 200
leading children's hospitals (called the Children's Oncology Group, or COG)
- they want and can find cures! My son was treated at a COG supported
hospital, SUNY Upstate Medical University , with success and I couldn't
begin to put into words my gratitude for the research and resources that
were available to his physicians. And we stayed right at home, feeling
confident in his care because of the collaborative efforts of the COG. I
have also recently read about the salaries of different charity's CEOs. All
I have read, including St Jude's, ACS, LLS...are all making $400,000-600,000
yearly. Guess the salary of CureSearch's CEO....$ 0.00 That is
dedication! I realize I may not be making friends here with this
information, but just reporting as it is. I appreciate all of the charities
out there, no matter what is between the fine lines.
Also any reading this if you could keep a little boy named Austin in your prayers. He is only two years old and he had a transplant today. He had chemo and radiation up to today to kill everything bad and even the good in his system. Transplant is today and hopefully today starts the healing and the cure. His website is www.caringbridge.org/visit/austinscott. Austin and his family are from North Carolina.
Thanks for listening.
Norma
It was sixteen years ago yesterday that Erik was diagnosised with cancer. I will say that at this point Erik is doing better than he ever has before. He is happy and he is healthy. What more could a Mom as for.
Erik recently went for another eye check up. To our surprise his eye site it near perfect. He does not need glasses at all. Shortly after his cataract surgery about 10 years ago he did need glasses for a slight adjustment. He did not like wearing them. Well in the past two years his eye site has improved. I don’t know how that happened but it did. God is still blessing and healing my son!
Erik and Jason are both taking Drivers education in school this semester. It’s really nice to see them studying together. Erik needs to take this test and pass before he can go to the rehab facility to be evaluated. He is maturing in leaps and bounds.
However,,, today I do think back with such bitter sweet memories of sixteen years ago.
Norma
The bands were great and the food was fantastic. I am so thrilled to have so many wonderful friends to come and help at this event. It is so very heart warming. So many people gave to this. We have already started planning for next year. Our event will be September 27th again but it will be on a Sunday. We had our wrap up meeting and everyone had so many wonderful ideas to improve it event even more. We have one more event this year and that will be a Chinese auction on December 13th at the South Hunterdon High School. We are just waiting for the approval of our insurance application and then we can submit that to the school. I will update on this more later. We have tons of wonderful things to put out that people in the community have donated. A lot of restaurant gift cards and gift baskets. After this event then we will be presenting the check to The Pediatric Brain Tumor Consortium at CHOP. I am so excited about this.
All else is moving along with the year. Erik is doing well. I think he is now doing better than he has ever done before. He is happy. He is finally coming to terms with his past and what he has been through. He is asking a lot of questions about what he has been through in his journey. A wonderful friend from church who is also a teacher at Hunterdon Central decided to do a project on people and how they are different. She had shown the class the video that Leeann had made last year of the faces of pediatric cancer. This was made for the ride last year. It was all kids in the area that had cancer and some that our now our angels. Linda had shown that video and another one LeeAnn made of Erik through the years with all the TV and news clips made. It was well accepted by the class. Part of the project in her class was to interview different kids in school. One of the boys asked her if she thought Erik would mind being interviewed. During their interview the boy had tears in his eyes. Erik asked him why he would cry. The boy told Erik that he had never met someone so strong and with so much courage. Just typing this makes me tear up as well. Erik has come a long way in the last year.
Erik also had an English assignment. It was to read an article and then answer questions and write a summary about what he would do if her were the girl in the article. WELL….the article was about a young girl that had cancer several years before and a project she was working on to raise money for awareness. I must say perfect timing. He did well on that project. The teacher told him he deserved more than an A….
Erik will be starting drivers Ed next semester. We have contacted a physical therapy group called Moss rehabilitation. They have a program that will evaluate Erik to see how he will do driving. He needs to get his permit first and then they do the evaluations. So as you can see everything is moving right along for Erik and into his future. I am one proud mama right now.
One last thing. We are planning our next fund raiser. It will be an extremely large raffle or Chinese auction as I have always heard it called. It will be at South Hunterdon High School on December 13th.
We will be donating the money to the Pediatric Brain Tumor Consortium the beginning of the year. Would like to get another thousand or two to put to the 11 so we will see.
High lights coming up….my parents will be celebrating their 60th wedding anniversary on November 20th. I have been working on a huge party for them at the Cock & Bull in Peddles Village. They actually want a big party with band and open bar…the works. They should be proud of this accomplishment.
Well it’s time to go and hope everyone has a great weekend.
Pleases pray for all the children that are battling cancer. I could give you a list of kids I have become really close to but let’s just say pray for ALL the kids to be cured and healed and pain free.
Remember
Prayer research = cure
Jason is back at Hunterdon Central this year. He seems to be adjusting very well and has no complaints at all. Erik has started Polytech for Pre vet. I have a meeting this Thursday at school to meet with his aid and teacher and guidance counselor. I want to make sure all is going well with the PreVet. Not sure he will be able to keep up and be successful with all of this. This is not a special Ed class by any means.
It’s something he really wants to we plan to give him the tools he needs for this. His doctors (when he was in the long term survivors clinic in July) were quiet interested in this and want to be kept updated on how he is doing. We went over the weekend and got his scrubs for class. So far so good! Erik may have some disabilities but when there is something he really wants and is interested in he really throws himself in to it and I believe he can do it.
I still have not heard back from Dr. Goldfarb at CHOP about Erik pulmonary testing. I’m sure that all is well. That’s what his assistant had told me. I would still like to hear from him as well.
We have been working endless hours on our event for September 27th. There are so many people that have come forward this year to help. So much going on and I am so excited about the whole vent not to mention so grateful for everything that is being done.
Aside from the pediatric cancer fundraiser event I am also planning a 60th Anniversary party for my parents. They decided they wanted a big party with band and everything. That will be November 15th.
Please continue to pray for all the kids that are battling this horrible disease called cancer. Prayers for them and their families as well.
A few people have told me recently that many are not aware of what ride4erik is.
Ride 4 Erik started two years ago when a friend, Susie Gherardi started a fund raiser for our family. Erik was diagnosed almost 15 years ago with medulloblastoma. This is cancer of the central nervous system. Basically tumors in the brain and spine. He was only 17 months old at the time of diagnosis.
After the first ride4erik Susie did all the paper work to make this a non-profit foundation.
We have several fund raisers every year with the ride being the main event. Each year we choose a different type of pediatric cancer to donate our earnings to for research. We also send a check of financial support to families in the area with a newly diagnosed child. We are preparing to send a check to our third family in less than a year. The events that we have are also trying to promote awareness to these special children and what they and their families are going through. A cancer diagnosis sneaks up on you and takes over your life without any warning. It is devastating what the families go through emotionally. This I know firsthand.
I have also been asked if the events help our family. The answer is yes and no. Financially the answer is no. My family receives no money from these events. All money is put in to our account and is controlled by our accountant, Debra Berry. The way my son does benefit, is the fact that research can still help him in his future. We do not know what the future hold for Erik and we plan on being prepared for whatever the future holds. The event also helps us as it bring awareness and understanding for Erik and the life he leads. Erik is cured of his original diagnosis but he deals with many long term effects from the treatment that saved his life.
The event this year will be on September 27th at the Valley Road Park in Hopewell. Valley Road Park is too really in Lambertville as it is just at the Mercer county border. It’s located just off Rt. 29 just past the Bell Mt. ski area. Our website it now being re-done and will be up and running soon. Directions will be on there. The day will start with a motor cycle ride and a bicycle ride. There is a full afternoon of activities, bands, tons of food and entertainment. Chinese auction and raffles with a lot of vendors.
We learned so much last year and are ready to come back this year bigger and better than last. This event is for the whole community to come and enjoy themselves while supporting pediatric cancer research and the families affected by it.
If anyone would like to be part of the planning please we need your help.
We are really asking that you come and attend this event and show your support for all the kids battling this horrible disease. I have learned that this can happen to any family and no one has a guarantee it will never affect someone you love.
Sincerely
Norma Zimmerman
enzimmerman@comcast.net
609-397-8892
You don’t have to have a bike to enjoy THIS event.
See below
Hi Ms. Zimmerman,
I looked over the CT scan myself - and Erik's lungs look great, with none of the patchiness that was seen on the MRI. Radiology also interpreted the lungs as being normal. I haven't been able to review it with Dr. Goldfarb yet, but I will as soon as he gets back from his vacation.
The testing that was done in the pulmonary function lab also looked good, with normal lung volumes, normal diffusing capacity (ability of the lungs to get carbon dioxide out of and oxygen into the blood), and just mild obstruction on the spirometry (which we knew already).
To me, all of this is good news.
I'll review everything with Dr. Goldfarb when he gets back (the week after next), and give you an update. If you have any questions about what I've said, or if anything isn't clear, please write back or leave me a message.
Take care,
Liz Fiorino
“Of course I e-mailed back and asked about what the MRI did show and about the obstruction that we already knew about?????”
Hi there-
The way radiology tests are done - I think - is that the computer is programmed in a certain way to best see what the doctor is looking for.
I don't think it's necessarily that the MRI was inaccurate - I think that it's just an issue with that particular study not being programmed to look at the lung, but the spine). So, in looking at one part of the body in great and accurate detail, the test gives up some accuracy and detail in looking at another. But, since the MRI looked suspicious, we went to CT scan - which is what we're used to using to look at the lungs. Does that make sense?
The mild obstruction on the lung function tests could mean that there's mild asthma that we could be treating with inhalers - and that's something to consider. However, Erik doesn't seem to be having any respiratory symptoms.
Let me know what other questions you have.
Thanks!
Liz
So this is all good news as we go forward. Thanks for your prayers.
We are all working away on the fund raiser for September 27th.
I will be making appointments for Erik to having hearing tests and eye testing done soon as well.
Norma
He will see the neurologist first and we can discuss the MRA that was done on July 8th. We have not heard back from Dr. Scott yet either. Oncology does not really go over that part of the testing.
After that Erik will have his CT scan of his lungs and then a plumonary test. Tons of prayers needed that there is no problem sceen with this. Hopefully the MRI was not clear. Erik has no breathing issues at this time so we will pray about that.
We are all working very hard on the fundraiser for this September. Time is moving rather quickly. I am putting my heart and soul in to this so we can raise a lot of money to give to the Pediatric Brain Tumor Consortium at CHOP. It's so very important to do something to help in finding better treatment not to mention a cure. If have sceen to much in the past 15 years to not want to do something about it. I could do nothing with out the help of all my family and friends. Any one reading this...please come to the event and support these kids and there journey. You will have a wonderful time and support a great cause.
There was just one problem of concern that has come up. Through the MRI they saw some issues in Erik’s lungs that were not there before. It’s not any kind of tumor or anything like that. It’s more scar tissue that is starting to show up now from the radiation he received 14 years ago. Radiation is the gift that keeps on giving. How a cure could also cause so much damage especially years later. His pulmonary doctor told me not to worry that they would be doing a few more test such as CT scan and another type of pulmonary breathing test to get base lines. He has none of the symptoms of this illness such as continued coughing or shortness of breath and weight loss. They are going to start to watch Erik very closely and monitor the situation. Of course to tell me not to worry isn’t possible. This information is somewhat hard to take especially now when I see Erik growing and maturing in to such a wonderful young man. I want things to be better for him and easier as well. I guess that is something that we just have no control over and I am very thankful that he is here to battle these problems. So many times along this journey we could have lost him and yet he continues to fight his way through the many problems that come up. As his Mom I am very proud to call him my son.
Please keep Erik in your prayers for good health and for all the many blessings that life has to offer.
As always Erik is doing very well at his job and really enjoying the summer off.
We are working very hard towards making our yearly fundraiser event a huge success. Ride4Erik will be on September 27th this year at Valley Road Park. Information for this event can be found on the website www.ride4erik.com there are so many new people that have joined Susie and I to help this year. We are very grateful to everyone. I would like to ask any one reading this to please support this event. To come and be part of making a difference in these kids lives. I plan on many of the kids from our area that are our childhood cancer survivor hero’s being there. Come and honor them. There will be tons of food to eat and drink. Live music handled by Jeff Kline of Lambertville. There will be adult games and children’s activities. Any questions please just e-mail me or give me a call.
Norma
Ton’s of prayers of thanksgiving being said!
Have a wonderful weekend!
Norma
Important thing is he truly understands all the answers.
I will update when we hear from the doctors later this week….I hope.
Norma
I am really looking forward to the next three days off as I am sure everyone is. Erik will be having his MRI/MRA this Tuesday. Please keep him in your prayers that all is well. I am really anxious to see what the MRA will tell us this time in reference to the surgery Erik had almost two years ago. Last year the results were that the surgery was now successful but the undamaged blood vessels were starting to grow and regenerate. I am praying for more improvement. Even though it has been 14 years since Erik was diagnosed I still get worried about any evidence of cancer showing up. My mind always ends up being so occupied with everything at this time. Please pray for strength and continued healing.
Erik’s appointment with the orthodontist last week did not go well. Yet another surprise for Erik from the radiation he received all those years ago. Erik had new x-rays done at the orthodontist and that revealed that the routs on Erik’s teeth are too short for braces. He would end up losing his teeth. Our nurse practioner from CHOP told us that when Erik had the radiation to his head that the second set of teeth were still forming in Erik mouth. The radiation stunted the growth of them. Yet there is still a blessing as the second set of teeth could have been destroyed. After talking to Wendy Hobbie at CHOP she told us that there is an orthodontist at University of PA that works with a lot of the survivors of brain cancer and she has found a way to move the teeth slowly that it would not be the problem of losing them. Erik has a consultation with this orthodontist on July 24th. Praying for that to be an option. He was extremely disappointed at the thought of not being able to have his teeth fixed. His teeth are really not that bad but to him…..it is. He wants so much to look his best.
We are also still working on the driving evaluation. I have put the initial call in and I am waiting for the call back. Hope this can all happen during the summer months.
I will update after hearing results from Erik’s testing on Tuesday.
Norma
Erik is doing well. Out of school and sleeping late he is a happy young man. Erik has several good things happening right now.
Today he has a visit with the orthodontist. He has been waiting for ever to be able to check on braces. He goes for an evaluation to see what he will actually need. Of course there is a lot connected with this. Trying to find more details about braces and MRI! Braces do not affect the MRI but it does affect the reading of results. The imaging parts. Sure don’t want any misreading of that test. OH NO! I have a few people at CHOP working on this right now.
Next I am finding out about Erik and getting his driver’s license. I am more than nervous about this. I have found several places that actually evaluate the person to see if they should be able to drive. I belong to a group called Educating-Pediatric Brain tumor group that has been so valuable with information on different things that the children receiving treatment go through and there needs to be successful adults. Erik is considered as having a brain injury. That’s because of the radiation. Dad thinks he will be able to but I’m a little nervous…but then again I was when Steve and Jen got there license. I am going to be talking to the two evaluation centers and see about payment for this. One is in Edison NJ at JFK-Johnson Rehab ilitation center and the other is Moss rehabilitation in Woodbury NJ. This is a two hour evaluation he would be doing. One hour is there evaluating him and the second hour is an evaluation behind the wheel. The part I am now nervous about is if they say no he should not get his license. The disappointment. So far all the past years we have always been able to find a way to make things happen. Finding ways to enable Erik to be successful. This is something we can’t do anything about. Driving is part of the dangers of the real world. To me…just because you can pass the test doesn’t mean you should have a license. There are a lot of people on the road that should not. That’s the danger to me. All of this will take place over the summer.
Erik will be having his MRI/MRA on July 8th. Happy Birthday to me. I am taking this as a good luck thing. His follow up appointment is July 23rd. They (CHOP) will be booking about 5 appointments in one day. A lot better than going back and forth on different days. All in one day is good for me.
Please continue to keep Erik in your prayers for all the things coming up for him in the next few weeks. He is such a fantastic young man!
Norma
She posted below message just last night. This is what she is going through. I just wanted to share the true meaning of cancer and what it does do to a lot of families when it takes there precious child. I hope that any one reading this understands that this is my world, this is what I read about and deal with every day. I have made so many on line friends that I love dearly and for them to lose there child is like it is happening to me. For some the post will be hard to take but as a parent of a child that has had cancer we were never asked if we could handle it or survive through it.
Norma
________________________________________________________
www.carepages.com sign on is juliansworld
WARNING!!!
Late ,straight from the broken heart of a sad, mad but still smiling mama , kinda post....
Life sucks , you know that?
You go about your business, raising 4 boys, along with a dog, a couple of cats , a husband, you go to church regularly , talk to God all day long as He was sitting by you , just live life. Then one day ,WHAM!!! Your world stops turning round. "Your child has cancer ..." "Hmm, I didnt hear you right ! Cancer? Try again...That only happens to others... Not my kid, not possible .Check again!" "Look at the scans, see this white matter there, about the size of a golfball, in your childs brain? That just shouldnt be there . It is a tumor , more than likely cancerous . Sooooo, in a couple of days , we will be opening your child's head , cutting thru his skull and remove that sucker, it will just take a whooping 7 hours at best , oh and we need you to sign a consent for blood transfusion , more than likely he will need it. And when he wakes up , there is great chances that he wont ever be the same again. There is this thing called post fossa syndrom, it happens to 1 kid out of 4 ,going thru this surgery... It could manifest itself with as little as your child not talking for a couple of days, to him being basically in a newborn state physically ( no talking, walking, controlling bowels , nor swallowing...) while still understanding everything... But dont worry we will do our best taking care of your son...." Well now that you said that , I feel so much better!!!! ( NOT!!!) ....
Surgery is done , everything went amazingly well, tumor 99.99% resected... Son wakes up talking, no need for shunts , perfect scenario... Pathology comes back , no big surprise , it is cancerous ... Since , the oncologist had already dropped by a huge notebook about brain tumor, treatments etc... Guess they knew b4 the lab did!! Even though the tumor is "all" gone, son still gets to go thru all the exciting treatments that go along with having cancer... Only "preventative" , just maintenance chemo, they said , for a year and you are home free... One more step , spinal tap, just to make sure it hasnt spread to the spine , thru spinal fluid... WOOHOO, CSF is clear ...
Prognosis? a whooping 80% chance of cure ( survival after 5 years...) Hell, we are doing just fine then... 80 % , thats pretty good odds in my book...
Going home for a while ... Radiations start ... 31 sessions , everyday (but weekends) for 6 weeks . 31 days of getting up before 7am , dragging your 4 year old to the hospital to get his port accessed, get him sedated , his brain zapped ( good and bad stuff ) , his skin being burnt, his taste buds getting screwed up, his tummy messed up, his hair falling off... keep a line sticking out of his chest for days... Throw up, runs, lack of appetite , loss of appetite , all that result in having a feeding tube going thru his nose ,down in his stomach. Oh and if it comes out a little you can either push it back in with a good chance of running it to his lungs instead of his stomach which would lead to drowning with the next feeding or just pull it all the way out until we can place one back in ...( DUH!)
We get a feeding pump, doesnt matter too much ,since the formula doesnt care much for staying in his tummy anyways... your 2 year old starts to weigh more than your 4 year old, starts to run faster etc... pretty frustrating for the 4 year old, who tries to convince himself that no matter what he is still the big brother...
Rads are over ... Tube comes out...Break ! yeah! Son starts feeling better , we are actually having more fun than we have had in a while but dont get used to it...TIME FOR CHEMO!!! Time to let the poison flow... it's ok though , it will save our son, right? Routine MRI looks great , cognitivity ok , hearing not bad ....One cycle, hair all gone, more throwing up ... 2 cycles , just fine... 3rd cycle (thats the bad one, like the other ones were good!!!!) we get pretty sick on that one . Weight still dropping , but the smile on our kid's face is still there ...( I would really be pissed by now!)
Too much weight loss, too many oral meds he wont take... Here come the G-button. That when they make a hole thru your kids belly and into his stomach and install a tube thru there. It looks like an air mattress or beach ball plug from the outside ... Such a life saver , believe me... On the inside it looks like a small mushroom with holes. How do I know? The surgeon thought he would impress me , rather , shock me and brought a picture to show me after surgery... I ruined the moment for him , because nothing impresses , i mean, shocks me at this point ... Next routine MRI ... Something is suspicious on the spine, Scans are sent to central review ... They are in Colorado for a conference, so it took forever to get that back ... While they are all having a good time out there , 3 weeks go by , without chemo ( by then ,the poison is welcome in our book !) . If something IS suspicious, dont you think they would hurry and get him back on some kind of treatment ASAP ??? nahhhhhhhh...let the cancer have free range in my son's body...
Finally ,results are back...Suspicious spot on spine is nothing BUT they saw something on the brain which escaped our doctors here at home, go figure! Soooooooooo three weeks later we redo a scan... If it is cancer , wonder how fast it can grow without any flipping treatment????
Well... only went from a pinkie nail size to a half dollar coin size!!! That crap is growing like crazy... Lets do a spinal tap ...Geeez that is packed with cancer cells... Your options? take him home and enjoy the 2 to 3 months he has left... SAY WHAT???? You are telling me to take him home and watch him die , that this is it???? other option? try some oral chemo, see what happens, prognosis? under 10 % maybe 5% ... How the hell did we go from 80% to under 5% ???
And remember, make as many memories as you can, go on your make a wish trip , NOW!...
My head is spinning ...My guts along with my heart are being ripped out ... What just happened? Headaches, scans, surgeries, rads, chemo, feeding tubes, more scans , RELAPSE , your son is dying .... COME ON...Someone ,please , wake me up , this is a freaking nightmare, a very bad joke, ENOUGH!!!!!! Noone woke me up, no one told me " just kidding" ... It is true , reality , OUR reality ... My "not long ago " healthy 3 year old , is now my " soon to be dead" 4 year old...
OK , think... what do i need to do ? How should i react ? One of my sons favorite thing to tell me is " Mama, smile... " Soooooooo, as long as he can look at me and smile , so will I ... Broken heart , but still smiling, just for you my lil man ... Off we go to Disney World... Again, the nightmare goes on, Er , seizures, " Does your son have a DNR order ?" "A DNR ??? NO !!!! FIX HIM!!!!" Son is getting stabbed , put on C-PAP machine, and all with no reaction , eyes opened with a blank stare... Anti seizure meds kick in ... Trip goes from bad to awesome... " See , Mama, wishes DO come true..." Oh baby, if you only knew...
Back home , it is all downhill from there , headaches, hospice set up , functions and abilities all taken one at a time , my "not too long ago" healthy 3 year old is now my " paralyzed, cancer eaten body" 4 year old... No denying it now ... He IS dying... He doesnt let us know if he comprehends whats happening... A question comes to me over and over and over again , and still to this day " HOW AM I GOING TO LIVE FOR THE REST OF MY LIFE WITH A BROKEN HEART???" I am still smiling for him... My son is fading away , slowly going into a coma... only times he talks or moves is to say and shake his head NO ... He looks mad or scared or both... He doesnt want to go ... It is killing me to see him scared ... Finally after 2 weeks in a total coma, he is showing signs of struggle ... his breathing is different , his heart rate too, he is only taking 8 to 12 breaths a minute( try to count your breaths and only take even 12 breaths!!) . On saturday morning , he has another episode of "fish out of water" breathing, but this time he cant beat it... With my hand on his bare chest, i tell him its ok, he can stop fighting now... His heart is slowing down, i feel his last heartbeats under my fingers... "He is gone" are the exact words I sent to Debra at 11.22 am ... 11.22 am january 19th 2008 , my four year old died following the fatal attacks of cancer ...
In 2004 , i was holding my healthy 18 months old son, crying after the death of baby Allie killed by leukemia. I was crying for her mother, i was crying for Allie, and crying because I was blessed with my three healthy sons... NEVER EVER did I think that one day I would be in Jennifer's shoes... Never ever did I think that day that one day my healthy 18 months old would turn 4 while battling cancer ... Never ever did I think that my healthy 18 months old would never live to be 5.... It only happens to others...Well , guess again , IT HAPPENS TO US ... It CAN happen to your children... If you think this is not your battle because your children are healthy TODAY , think again, tomorrow IS another day , but not always another GOOD day !!! Childhood cancer is everyone's battle , not just cancer kids and their families' .... IT IS YOUR BATTLE TOO , just so if your kids, your nephew, niece, grandkids , ever have cancer, a cure will be available for them , just so numbers wont matter because cancer will be 100 % curable...
We were given 80% at a five year mark for cure , Julian didnt even make it half way thru treatment... It is unacceptable.... This has to be stopped....
WOW!!! This was a workout , now, I think I should go on to bed and try to think of a happy place so i can get a few hours of sleep... Any suggestions???
Oh and please , don't need to remind me that I do have other children and that should be enough , because i already know that ... It still doesnt take away the fact and cruel pain that one of them is gone...
Mimi
17 years old...how fantastic is that. Erik is a happy young man. The only thing I think he would want is a GIRLFRIEND...can you imagine that. YES.
Today it is so much on my mind just how much we have received yet how much he has lost in this journey of pediatric cancer. This journey never ends..Thank God! I am thrilled for the young man he has become. I would only want more for his sake for his future for I have already received the greatest gift there is.
I made a collage to put on the home page of this site and I am having a real time trying to get it on there. I scanned it in and I will figure this out. EVENTUALLY
Please join me in celebrating and rejoicing in Erik (our) big day.
Erik Jr. had an appointment with his gastroenterologist this morning. It was a good appointment and he doesn’t have to go aback for a year. Wow! It use to be 6 months and now we moved to a year.
Erik is still doing well in school and working. He amazes me all the time. He is studying Hamlet in English and he loves it. His teacher has e-mailed me and said she is amazed at how Erik maintains all the information on this. Good going Erik….
I am setting here thinking about tomorrow. To most May 17th is just a date. May 17th brings me back in time to 14 years ago when Erik was having his last radiation treatment. That was the end of all Erik treatment and he has been cancer free ever since. There are so many blessings to be counted on this day. It’s almost like a second birthday.
Please keep all the little ones that are all at different places in their journey with cancer. Pray for healing and for strength.
Norma
My friend Carol Aron has finished her brain radiation and now she will have time to heal. The treatment has been really hard for her but she is getting Through it. One thing she said to me last week was "This to shall pass". She is such a strong christian woman. Even while going through all of her treatment she has been spreading the word of her faith and God's healing. Her website is www.caringbridge.org/visit/stacysmom.
I wanted to let you know that the little boy I asked evert one to pray for...Joshua earned his wings last week. The family is so broken and they really need tons of prayers. A precious 18 month old child how can this happen.
This is mentally gearing me up to start on our yearly fund raiser to raise money for pediatric cancer research and also money rised to support (financially) those families with a newly diagnoised child.
The event this year will be September 27th at the Valley road park in Lambertville, NJ.
We will be having our first planning meeting tonight at 6:30 at the kirkpatrick Memorial Presbyterian Church in Ringoes.
Any one interested or have any good ideas please let me know.
My home phone number is 609-397-8892 and my e-mail is
enzimmerman@comcast.net home
norma@kooltronic.com work.
Norma---proud mother of four pretty fantastic kids.
We spent the Easter Holiday in North Carolina with Nancy and Bill. We all had a really good time. Especially me! It was great seeing Nancy. Long drive….maybe next time flying would be nice.
Erik is doing well. We are getting ready to make an appointment for his one year check up in the Long term follow up clinic. He doesn’t seam to have any real problems at all right now. He’s just moving right a long now with school and working. Some times he has a little attitude about doing new things but….it’s all part of growing up.
I do want to ask for prayers for several people very close to me. My niece Amanda is had a consultation on Tuesday with a surgeon. In some routine tests last week they think that they found something showing up in her lungs. They will be operating on one lung the beginning of May and after healing they will operate on the other lunch. There is a new medication they are starting her on. (Let’s here is for research) Amanda has been through so much already. She needs a break. She needs for good results to come from all of this.
Also, for a dear friend Carol Aron. She is a two year survivor of lung cancer and a few weeks ago she had some problems and they found a brain tumor. She is going through radiation now for that. She is such a strong Christian. Even while going through all of her treatment she has been spreading the word of her faith and God’s healing. Her website is www.caringbridge.org/visit/stacysmom.com
There is another little boy who is only 18 months old that is losing his battle with leukemia. His name is Joshua. He is such a beautiful little boy and he has stolen my heart completely. Please read below a part of her daily update on his website.
“I'm mad at cancer for taking my boy's smile and loving personality away. I'm mad at cancer for taking my loving heart and shredding it to pieces. I'm mad at cancer for all the 7-8 medicines I have to give you everyday.... One of my friend's sent me a quote "You didn't grow beneath my heart, you grew in it". Josh you'll still be within me always. The love I have for you will always be the same. Although right now my heart is so swollen with devastation. It's really just not right... “
These parents are going through so much and yet still losing there children. These kids go through so much and endure so much pain in there treatment. Yet that still is not a guarantee that your child will survive.
Please pray for all the children that are fighting this beast called cancer!
This is mentally gearing me up to get started on our yearly fund raiser to raise money for pediatric cancer research and also money raised to support (financially) those families with a newly diagnosed child.
Last year we donated $3,6000.00 for the pediatric brain tumor foundation. We also helped two families with a check for $500.00 each. This year we will be raising even more money as last year was our first year and making it a non-profit foundation costs us money. That doesn’t make sense does it? But that is our government and our laws.
This year the money will be going to the Pediatric Brain Tumor Consortium at Children’s Hospital of Philadelphia. Some of Erik’s doctors are involved in this and there research.
All money goes exact ally where it is suppose to. This is so important to me to try to do something and to make just a little reasoning for what my own son has been through.
We are having our first planning meeting on April 17th at 6:30. This will be at the Kirkpatrick Memorial Presbyterian Church in Ringoes.
If you are interested please call me. 609-397-8892
Erik continues to do well in school and working at Stop & Shop.
We attended the Shannon Daley Fund raiser this past week. It was a basketball game and they had a wonderful turn out. Erik got to shoot a few hoops with the team before the game started. He was very happy about this. He loves basketball.
Erik continues to do well and has no doctor’s appointment for March. Late April or Early May he will be going in to Philly for his yearly appointment with the Long Term Follow UP clinic. He sees several of his doctors for check ups all at the same time. This helps to cut down on trips to Philly.
We have started to make plans for the next Ride4Erik. Our fund raiser this year will be September 27th at the Valley Road community park. This is just off Rt. 29 a few miles out of Lambertville. Our minds are already to starting to buzz with ideas of how to make this even better this year.
I would also like to mention that there will be a blood drive at my church on March 17th from 2-8PM. This will be at the Kirkpatrick Memorial Presbyterian church in Ringoes NJ. If any one is interested in giving blood at this time please call the church at 908-782-1177. Years ago I didn’t really understand when people would say donating blood can save a life. It was when Erik was going through treatment and he needed blood products to survive to get through the chemotherapy. You truly can save a life by donating blood.
Thanks you for your continued prayers for Erik and my family!
Norma
Our fund raiser two weeks ago was a huge success! We raised over five thousand dollars to go into the Ride4Erik account. We have decided that the pediatric research group we will be supporting this year is.
http://www.pbtc.org/public/donorinfo.htm
This is the Pediatric Brain Tumor consortium
Erik’s neuron-oncologist in the Long Term survivors Clinic is on the board and all that work for this organization is volunteers. We feel that this hard earned and generously given money will get the full benefit of what it is for with this. We are now excitedly getting our plans together for the ride in September.
Erik is doing well with school and working. He made the honor role again
And we thank Kathy Orr his aide for all she does and puts up with from this young man. He’s not always easy.
A very special woman from Erik’s earlier school years sent me the link below. This his so close to the heart of what people can do to make a difference. Especially with disabilities it still happens. I so pray in my heart that as Erik grows up in to a man that he can see all the good he could do for others.
http://www.simpletruths.com/simpletruths/a.aspx?af=219&mo=stsr
Please keep all the families from my last post in your prayers. They are all having a rough adjustment after loosing there precious children.
Meghan has really good news with her latest MRI. If you want to check that out her website is www.caringbridge.org/visit/meghannorris
Her parents are so very thrilled about all of this. Yet it’s not easy. It’s good news yes but after the last year of seeing there child suffer through the treatment…..just thank God the good news is coming now.
Norma
Jeremy Richards lost his battle on Wednesday 1-23 His website is
www.caringbridge.org/visit/jeremyrichards He will forever be 7.
I am asking for prayers for three families that I have become very fond of in the past several months to a year. These three young men have traveled the same journey with brain cancer that my son has. All three have become heaven's newest angel in the past few days.
Friday
Stash Phillips 12 years old. www.caringbridge.org/visit/stashphillips
Saturday
Julian Avery 4 years old
www.carepages.com password juliansworld
Sunday
Tyler churchhill 3 years old
www.caringbridge.org/visit/tylerchurchill
The cure rate is suppose to be getting higher for kids with cancer......what is happening. I have scene so many children die in the past several years that my heart just breaks for these families.
Please....when we do our fundraiser for pediatric cancer research please give what ever you can so we can try to save the children. These kids go through so much in the treatment they receive and then to lose this battle anyway.
Thanks for your prayers and all of your caring.
Norma
Friday
Stash Phillips 12 years old. www.caringbridge.org/visit/stashphillips
Saturday
Julian Avery 4 years old
www.carepages.com password juliansworld
Sunday
Tyler churchhill 3 years old
www.caringbridge.org/visit/tylerchurchill
The cure rate is suppose to be getting higher for kids with cancer......what is happening. I have scene so many children die in the past several years that my heart just breaks for these families.
Please....when we do our fundraiser for pediatric cancer research please give what ever you can so we can try to save the children. These kids go through so much in the treatment they receive and then to lose this battle anyway.
Thanks for your prayers and all of your caring.
Norma
Every one else is doing well.
In my pediatric cancer world there are a few little guys that need prayers.
First there is little boy in Livonia Mi that is 17 months old...justlike Erik was when dx'ed. He has recently been dx'ed with a brain tumor and needs tons of prayers. I will get the rest of information later with permission to give out web site.
Then there is sweet Julian. He is at the end of his journey and ready to go in to the open arms of our lord and savior.
His Mom and the rest of his family are pulling all strength from the Lord and staying aat his side with love and support as he leave this earth and enters in to heaven. I admire this mom so much as I don't know if I could go through this with so much dignity and faith. Losing your child has got to be the worse and most painful thing there is.
Please keep Julian, Mimi (mom) and the rest of the family in our prayers.
To visit and give words of encouragement you would go in to
www.carepages.com and the sign in is juliansworld.
Thank you for your continued love and support
Norma
Erik is doing very well with school and working at Stop & Shop. He continues to be happy and having a good outlook. There were a few days during the Holiday that he was a little down but soon felt better after his brother and Kevin spent some quality time with him. As good as things seam to be going now there are times when he is just lonely. One day when he came and talked to me I could see tears in his eyes and that is very unusual for him. He desperately wants to have more friends and especially of the female type. I wish I could wave a magic wand and make the perfect friends come along to add to interests. I understand this isn’t just the prayer of a mom with a child that has had cancer but the prayer of many moms. That has been an on going thing for all of his school years.
I have been working on our next fund raiser. We are doing an all day crop on January 19th. This will be held at the Lambertville Rescue Squad from 9AM to 9PM. This is an event where people pay to come and it gives them a place to do there specific craft during that time, three meals, raffles, a choice to have a message if they would like and plenty of door prizes. This is the first ride4erik crop we will be having. My friends Trish Stabler and Michelle Carey are the experienced ones that are really doing all the work. Two very special ladies! They have recruited so many others to help as well.
Erik has an appointment today at CHOP. He has to see the orthopedic doctor. Erik has scoliosis caused by the radiation he received many years ago to his spine. In my opinion it has gotten worse. We will see after he sees the doc and has x-rays done. Caring the back pack at school hasn’t helped any either. Erik aide Kathy Orr has done every thing she can to cut down on the weight of books and all. We tried to talk him in to a back pack with wheels to pull but he wouldn’t hear of it.
Please keep Erik in your prayers today as he goes for this appointment.
Also, prayer requests!
There is a young man that is at the end of his journey with brain cancer.
Julian is only four years old. The family is in so much pain. His website is.
www.carepages.com type in JuliansWorld
Please keep this family in your prayers. I know that they are suppose to be making a lot of progress with all the research and the cure rates are suppose to be going higher. In my world…..there are so many children dying around me like sweet Julian.
Please do everything in your power to help towards funding research and finding a cure.
Norma.
Erik is doing very well! Still loves his job and is doing well in school. His next doctor’s appointment is January 3rd with the orthopedic doc. I am concerned about his back as his spine is quiet curved. This is a regular check up and they will take ex-rays. They haven’t wanted to do anything about it in the past but to me it has gotten somewhat worse. He doesn’t have any complaints so we will see. The one thing he seams to look forward to the most is working and making money. He only wishes he could work more hours. Stop & Shop management is very please with Erik and have told us that they wish they could get more kids to work as hard as Erik. They are very good to him.
Jason is now attending South Hunterdon High School. He really couldn’t settle in at Central so we made the switch. He is very happy there in a smaller setting.
Every one else is busy preparing for the Holidays. A very exciting time of year.
I have in the past asked for prayers for Meghan Norris. Her parents had some really good news about two weeks ago. The spots that were showing in the brain…they did the surgery and they were scar tissue…praise God. Meghan’s treatment is over. Visit Meghan at www.caringbridge.org/visit/meghannoris.
Another little girl that I have become very fond
Of is Karlie who is just over a year old and has a brain tumor. She is having an MRI today so the stress level is high for Mom and Dad.
Her website is www.caringbridge.org/visit/karliespurlin
She is a real sweetheart and tons of prayers for her MRI are needed.
Thank you for your continued prayers and support of Erik and my whole family.
Merry Christmas to all.
Norma
I cry from the pain my child has endured and the healing he has received. Bitter sweet! I also cry for the many others that have been on this journey and especially for the beautiful children that have gone on to heaven and are truly healed.
It's 7:30 and I think back 15 years ago to the minute that we were handing our 17 month old baby boy over to the O R nurses. At that moment now knowing if we would ever see him a live again. The pain and devestation so great! I am so greatful for my husband that had the strength to carry us through. I was 8 month pregnant and absolutely brain dead and felt worthless to help.
It was around 12 noon when they wheeled our precious baby out of recovery with his teddy bear in his arms. He was still asleep but we could see him and know he was alright.
At that point I didn't know how we would get through the next two years it would take for his treatment. They had told us that radiation was the cure for Erik. He would need chemotherapy until that point. My son Jason was born between Erik's first and second chemotherapy treatments.
My doctor induced labor so my husband could be with me for the labor.
My family was a God-sent. My daughter just pitched right in and did every thing for Erik until Jason was born. They had said not to change his diapers because of the chemo and as I was pregnant.
It was a long hard journey for my son Erik. He has over come so many obsticles. He has worked harder to keep up with everything and is a true hero in our eyes.
For those afraid of radiatin...yes it is hard on a child. Yes Erik does have some disabilities but he is here and he is happy and healthy. We were told about ten years ago what they felt Erik would not be ble to do or accomplish. A lot of what they said is wrong.
He has already over come so much of what they had perdicted. He is hard worker and we always looked for ways to work with Erik to prove they were wrong. We were not in denial as they had thought we just loved him so much we wanted him to suceed.
I think back and know we are all better people for having been through this.
Going through the worst of times can bring many blessing a long with it.
Thank you for letting me put my thoughts down in writing
Norma
On the right side of the brain there were damaged blood vessels and some healthy blood vessels. It seams that the healthy blood vessels have started to grow and compensate for the others. This is very good news for Erik. They will check him again with and MRA next June and see how that is coming along. If this continues to progress like this the danger of his having a stroke will start to lessen.
I have learned that the power of prayer is extremely strong! We didn’t see this good news coming and it is fantastic! God is always in control and he is the one with the plan for the future.
Erik continues to be extremely happy with his life. He is doing very well at Stop & Shop and the management there has so many good things to say about him. He is a hard worker as all of his life his has had to try harder at everything. This just comes natural!
I have been working very hard on the fundraiser for this Saturday. If any one reading this is in the area please stop by and do some Christmas shopping. It’s at 2PM at the Amwell Valley Rescue Squad building. There will be various crafters, vendors and demonstrator consultants. Money raised will go to Pediatric Cancer Research and to help Rayanna and family. Rayanna is a four year old girl that lives in Sergeantsville and was diagnosed in July with Leukemia. We want to support Rayanna and her Mom Jen.
Norma
Will up date after the appointment.
To any one reading this in our area....we are having another pediatric cancer fundraiser next weekend. That will be November 10 at the Amwell Valley Rescue Squad. Funds will go to pediatric cancer research and to Rayanna. Rayanna is a four year old girl dx'ed with leukemia in our area.
This will be a craft/vendor/demonstration for the community
This will start at 2PM.
If anyone is interested please e-mail me or call
enzimmerman@comcast.net or 609-397-8892
Norma
Erik still loves working at Stop & Shop. He gets a long well with every one there and no longer has his job coach. He is on his own. Erik is still doing well in school. He had a problem a few weeks ago with a couple of kids in lunch but I think that is all straightened out now. All in all he is doing very well.
We are now working on out next fund raiser. On November 10th we will be having a craft, vendor, and demonstration event for Christmas shopping at the Amwell Valley Rescue Squad at 2PM. Our money raised at this event is going to go to Rayanna Marrero who was recently diagnosed with leukemia. She lives in Sergeantsville.
One community coming together to help find a cure!
Make a difference in the life of a child with cancer.
You are invited to Christmas Shop early
And
Support Pediatric Cancer Research at the same time!
Date: November 10th
Time: 2PM-Amwell Valley Rescue squad, Ringoes
Various vendors, crafter and demonstrators.
Being Invited by:____________________________________
Take your time and brows while enjoying the company of others in your community. Have something to eat & drink.
If you can not make it and are interested in helping this cause please call Norma Zimmerman 609-397-8892 or enzimmerman@comcast.net and I will get you information to shop with.
Proceeds going to a Rayanna & family a newly diagnosed child!
Supported by: Ride 4 Erik Supporting Pediatric Cancer
Any one in the area please free to stop by. We would love your support!
I will update again soon. Prior to our meeting on the sixth.
Norma
Will up date later.
Picture above is the banner of hope from the ride several weeks ago.
Dear Dr. Ichord and Mrs. Zimmerman:
I received another edition of the CDs this weekend. The right side operation was only minimally successful, I think, with new blood supply to the right side of the brain seen only faintly on that study. There is good filling of the left temporal lobe == which is good -- but the scalp artery that we used is for the surgery is barely seen. This finding may be related to the diffuse thickening over the surface of the brain that we noted at the time of the original operation, but I don't have a definite explanation for the finding at this point. As I noted previously, the left side continues to look normal, and certainly I think that Erik can continue to be followed only with yearly MRI/A studies at this point. I regret that we haven't been more successful with the surgery, but if Erik has new symptoms related to problems on that side, it is possible to repeat the procedure doing the operation is a slightly different way. I have only rarely had to do repeat surgery over the past two decades, and I hope it will not be necessary in Erik's case.
I know he will be carefully followed clinically, and that you will keep me posted about him. Please let me know if you have questions about anything I have noted above.
Dr. Scott
Dr. Scott e-mailed me this morning. While doing the angiogram they either did not inject dye in to the areas of the right side of the brain that we were looking to see growth of transplanted blood vessels or they omitted it off of the CD. Hoping they omitted that area and can resent completed testing again. If not…I don’t know. My God he already went through to times with this test go get it done. What he has been through in the past few weeks.
We had already decided that further angiograms will be done in Boston…this just backs up that decision. Dang!
I am livid at this point!
Below is what Dr. Scott said.
I have received Erik’s studies from CHOP. The left side vessels look great, and there is no evidence that the narrowing is beginning to occur on the left side. Unfortunately, they did not inject the operated side, (or they weren’t included on the CD they sent me) and I can’t say anything to you about how successful the right-sided surgery was. I can see from the left sided external carotid (scalp vessel) injection that the blood flow from the left scalp does cross over to the right side, and I believe that I can see some filling of blood vessels on the brain through the burr hole that we did for the blood flow monitor. All of this is good evidence that the surgery may have done its job, but important information regarding the effectiveness of the surgery was not obtained because the relevant blood vessel was not injected. Becky, do you think that they just omitted one sequence from the CD?
Dr. Scott
Every thing else is moving a long nicely. Erik is enjoying his job at Stop & Shop more then you would believe. Getting out around people and having to be nice to every one is doing him good. He is so organized in getting him self together in the morning and setting every thing out for work after school.
Jason is doing well in High School also, He truly loves being there and I know there is a girl that he has been talking a little about. They are planning a large paint ball faunally at our house this weekend. Hopefully they will do it Friday while I am at work as it is a Holiday for the kids. Dad’s in charge….
A special thank you to those stopping by to check in on Erik…your caring is so appreciated.
Please keep Meghan in your prayers as she has started preparation for her stem cell transplant. Meghan just turned 1 year old and she and her family need prayers for strength and support to get through the final steps of her treatment. The Norris family is so very special to me. www.caringbridge.org/visit/meghannorris
Norma
I will update more when I hear the outcome of it all.
If anyone reading would like to make a donation to RIDE 4 ERIK there is still time.
Erik goes to the RIDE 4 KIDS in Philadelphia on Sunday to present the check of our earnings. He will feel like a real champ doing that. RIDE 4 ERIK will be an on going fund raiser. What we earn during the year will go towards the organization we choose for next September.
September is Pediatric Cancer Awareness Month. Please take a moment to remember all the children that have lost there battle with this horrible disease. Also to honor those battling and suffering at the hands of this monster called cancer. I have learned that this monster can strike anywhere to any one. There was no cancer in my family or Erik’s side prior to our son being diagnosed. But it happened. All we want to do is to make a difference. To bring a little big of reason to the why’s of it all. Please support us in our journey of trying to help make a difference in the lives of these children. We know what this all feels like to be on this journey. We have scene our own child suffer and many other children as well, we have also scene children die so young for no reason other then this monster of cancer took over there bodies. Please help us make a difference!
We love you all.
Erik & Norma
If every one reading this could please keep Erik in your thoughts and prayers tomorrow.
He goes to CHOP for his cerebral angiogram. I, today and totally stressed out about this.
He will be having anesthesia and the test is scheduled for 8AM. He will need to be there for 6-7 hours after test is complete. Please pray that there is not a lot of bleeding during and after the test. They want him to continue the baby aspirin right up until tomorrow morning. That there are no problems during the test. Finally that the test shows that the surgery last August was 100 uccessful. And let’s not forget about what they will find on the left side of the brain with the blood vessels. What break my heart is all that he has been through and still going through and will be. Yet I praise God that he is here go to through this. Tug a war of the heart here. Erik is such a good boy. He has his moments and I wish I could curb his language. Right now he is so thrilled. He started work at Stop & Shop last week and he loves it. He also loves school (so far) and is doing very well. Good things have been happening for him and his self esteem issues.
We have so many people to be thankful for with this, especially Kevin Ireland who gives to Erik 100 n his emotional growth.
Jason is doing very well also; he started Hunterdon Central last week and is on the football team. He is adjusting very well.
I am extremely proud of both of my boys. I should say all of my children. Steve and Jen are doing very well also. They helped out so much with the event on Saturday. It made my heart jump for joy and I was so proud to see all of our family and friends helping us with our dreams.
Thanks you all so much!
Please check Meghan’s site as they had some good news yesterday. www.caringbridge.org/visit/meghannoris.
Please keep Mackenzie Wright in your prayers. She does not have a website. She lives in Stockton with is a neighboring town. She recently reoccurred and is being treated at Sloane Kettering in NY.
I will update after tomorrow.
With Love and Gratitude
Norma
We were told to give him all his meds prior to coming. After involving all his doctors at CHOP, neurologist, oncologist, endocrinologist and hematologist, it was decided that we would (after two hours) go ahead. The danger of Erik not having the aspirin for seven days was far more dangerous then the danger of extra bleeding from the thinning blood. They took Erik back at 10:30 and started the sedation. They came out at 12:00 and said they couldn't complete the test. Erik had the maximum of sedation and he kept waking up. They had the catheter in and all it's just that he kept waking up. We still had to stay the 6 hours of his laying flat on his back. He now has to go back in two weeks and have general anesthesia for the angiogram. Unbelievable. He has had so much sedation in the past 14 years that it just isn't working any more. He is a strong willed young man. It's not that he was fighting it....it just isn't working any more. It just makes us stop and think about all he has been through in the past and it's heart breaking. Yet he is such a fighter and that is what has gotten him through all of this.
Thank you for your continued prayers. Through prayer there is strength and courage!
Norma
Erik goes for a very important test on Tuesday at CHOP. He will be having his cerebral angiogram. This will tell how successful the surgery was he had last Augusts and how much damage is showing to the blood vessels on the left side of his brain. Please keep Erik in your prayers for this test. To me this test is one of the most dangerous and scary test she has had. The test will take about an hour but he has to stay in the hospital and lay flat on his back for seven hours. I will admit I am more then a little nervous about this.
Will update after the test on Tuesday.
Norma
Jason is busy with friends and foot ball practice. I think they are both ready to go back to school. They miss it and so do I. Every thing seams more on schedule then. Also, the house stays a lot cleaner.
I have been working on ride4erik. I am learning so much and a lot I can use next year to do even more. There are so many amazing kids out there that are battling cancer and there strength is amazing. I so much want to bring awareness to what these kids go through. Not for sympathy but for understanding. Erik is different from other kids his age. I want to see him accepted with understanding and not left out.
I was asked by a friend of mine that belongs to the pediatric brain tumor group I belong to for answer some questions. She lives in Europe and was giving an orientation at a conference for doctors all over the world.
For me it was quiet an experience digging back in to my memory and going through these feelings. I have enclosed them below for any one that would like to read what it was like for me to have a child diagnosed with cancer.
I believe the first question was the effect and feelings on a family when a child is diagnosed.
I think back to the day of Erik surgery. He was only 17 months old. The fear of handing our baby over to the surgeons not knowing what the next hours would bring. The tortuous waiting and the pure joy of seeing them wheel my precious son out of surgery with his teddy bear in his arms. A very strong memory is that first night when the hospital had given us a side room so we could try to get some sleep. I was also 8 months pregnant. I remember the darkness and feeling like I/we were in a place so far away that I didn't know if we would ever be able to get through the next minute-hour-or the years that they said my son's treatment would take. The devastation was so strong and there was no way to think or look around me. I am a person that has always looked at the brighter side of things. On that night there was no brighter side only helpless feelings of desperation. It took me time to heal and to start fighting. I had/have the best husband that was positive and did everything until I was able to deal with it. He always treated Erik as if he was not sick at all. He treated him like a normal little boy that wasn't going through the worst journey a child could take. As a family we have grow so much in strength as a couple and as parents. There were bonds that were created that could never break us apart.
The other question was about doctors.
The doctors we have bonded with and love. A doctor that is and acts as a human being first. Can make direct eye contact and does not talk over your head and has compassion. One that welcomes questions and has patients with parents that are devastated and trying to think clearly and make decisions. Doctors that you can SEE love kids. Some times you can get a doctor that has no emotion. This has never given me a feeling of security. My child is and was more then a name or number.
I can remember be so devastated and I would be setting there and they would be talking to me and my ears were not hearing. I had to start writing things down
We had heard from Dr. Scott in Boston that the blood vessels in the left side of Erik's brain were not any worse. Can you believe we still have not heard from our neurologist at CHOP
I just can't believe it! She will hear about it when we do see her.
Erik went for an interview at Stop & Shop yesterday and he now has a job. Waiting for all the paper work but he has the job. Shop Rite never worked out for him. He is still working at Tabby Place volunteering once a week and working at the veggie stand that we have. He is doing extremely well but yet a little lonly. I can't believe the summer is half over.
We are working extremely hard for the ride4erik that will be in September on the 8th. Any one reading this...please come.
I promise you will have a great time. So many fantastic ideas for taking place.
Last week I was asked to give my past information for a lecture that another lady was giving. It was hard going back in time and remembering the beginning and how it effected us. I will post what I wrote the next update.
Jason has decided to go to Hunterdon Central in September. He had wanted to go to Sounth Hunterdon which is closer to us and where Dad works. All of a sudden on Saturday he came to us and said...I have decided I want to go to Central. We were both shocked as he has been driving us nuts for the past year about going to South. My feelings are...what ever makes him the happiest.
So...please keep Erik in your thoughts and prayers for the 28th of this month.
Also, pray for Jenna. She is a friend of your that is 18 and recently relapsed and is being treated at CHOP.
Meghan that is in the middle of her five round of chemo and she is only 7 months old.
There are several more so please just pray for the children!
Norma
The plan is for Erik to have the arteriogram in August and that will give the full picture of what is going on from the surgery he had last August and the new questions about the left side blood vessels in his brain.
All continues to be going well. Erik Sr. is busy working in his garden. Jason is getting ready to go away for a week at basketball camp at Rider College and he has also started foot ball practice. Busy young man.
Erik continues to volunteer at Tabby Place on Monday’s and is still looking for a part time job. He will have that soon enough when dad’s veggies start coming in.
Please keep a friend of ours in your prayers. I have met and become good friends with two other moms’ here in central Jersey that has daughters that had the same type of brain tumor that Erik had. Katelyn is about 8 years out of treatment and is 19 and the other young lady is 17 and her name is Jenna. Jenna was about 2 years out of treatment.
Last week we found out that she has a re-occurrence in her spine. I will be going to CHOP tomorrow to visit for a while.
Please pray for Jenna and all the other children going through this difficult journey.
Norma
Yesterday I went to Hopewell Methodist church in Hopewell and gave my testimony on Prayer and faith.
I have posted below!
Thank you for inviting me here this morning. I have such heartfelt thanks for all the prayers your church has given my son over the past 14 years.
I didn’t know much about cancer at all until my 17 month old baby was diagnosed with a brain tumor. The first days of his diagnosis were so difficult. I can remember back then that the most meaningful thing any one could do or say to me was. I am praying for your son. Starting on the cancer journey the most secure feeling is to be surrounded in prayer. There is nothing any one can do there is no money that can change anything. Prayer was our life line.
Remembering back then I just felt like I had been placed in a dark tunnel with no sign of light.
As we got in to the way life was to be and situated our selves on this path a light did appear. That light was Jesus. I truly do not think I could have gotten through all of this with out the strength I have received from the Lord.
Erik got through his chemo quiet well. The anti-nauseous med worked for him…except the few times they didn’t get it right. The time did move rather quickly as every day was busy. Both of us trying to work and another son being born. I thank God every day for the birth of my last child. He helped so much with Erik threw the years. Erik always trying to keep up ….How far that brought him. There was so much going on when Jason was born. They actually induced labor in-between two of Erik’s chemo treatments so that my husband could be there with me. We choose the name Jason. Several years later we actually looked up the meaning of his name. I should not be surprised to find out that Jason mean. The Healing one. God has truly always watching out for my family. I could feel his presence.
Prior to radiation I wrote a letter to every “single” church in the area asking for prayer. We were so broken knowing that the radiation could save his life if he was to survive but knowing what it would do to his young body. The damage it COULD do.
In my opinion the radiation was much harder on him to endure then the chemo.
I can remember half way through the radiation taking him in to the clinic for blood counts. His body was so weak and in my mind….I knew I was loosing him. My heart was broken and one of the nurses was near by. She came and took him from me and told me to take a few minutes. I took that time to pray in the ladies room. My prayers were for God’s will to be done. To watch your child suffer if so heart breaking. Erik’s field of radiation was the brain and spine. All the anti-nauseous medication did not work for this.
I asked God for his will yet begged for his healing hand. That was the turning point. That was Erik’s weakest moment. He started to improve after that.
Erik had so many excellent and educated doctors this is true but Erik’s healing came from the hand of God. There is no doubt in my mind or in my heart. Erik was not suppose to make it from what the statistic that we were given in the beginning. BUT He did he was healed.
Erik has never complains about anything he has to go through. It’s part of his life. A life that was saved by the grace of God. He is a true hero in my eyes. As courageous as all of the kids that battle this disease is.
In Sept of 1997 Erik started to have symptoms that he had originally had in the beginning. We were devastated thinking our son was having a re-occurrence. How could this happen. My husband took Erik down for an emergency MRI. I sat by the phone praying waiting to hear form Erik for the results. Scared yet praying for God will. I had to be strong. In my prayers all of a sudden there came a great peace about me. A totally feeling of contentment and love. With in five minutes Erik called and said it was not cancer. Erik’s VP Shunt was malfunctioning. Yes he needed emergency surgery that night but it wasn’t CANCER. That was the second time that I had the feeling of God laying his hand on me and speaking to me. I have learned that I need to always surrender my self totally to God’s will.
It’s people like you that give me the courage to do this.
Erik just turned 16 June 7th. He had all of his testing done last Tuesday. We just got the results back and he is cancer free. Praise God. We are waiting to hear the results of the MRA that is checking on the blood vessels issues on the left side of his brain. What ever these results are we can deal with it.
Erik had a wonderful 16th Birthday with family and friends. I think it was everything he wanted it to be. He will be volunteering at Tabby Place with the starting date of July 2nd. Shop Rite I’m not sure of since I haven’t heard anything back at all yet. He is kind of disappointed about that. He is enjoying his first days of summer vacation. We just have to find more things to fill the hours of the day for him. Jason is always so busy going places, especially with just graduating from East Amwell. We just have to find things for Erik to do. Kevin Ireland is taking him to the mall on Thursday. That is one of his favorite adventures. Thanks Kevin!
Please keep Erik in your prayers especially tomorrow. He will be going to CHOP tomorrow morning for his MRI/MRA of brain and MRI of spine. He will be having these tests under anesthesia as it takes around 3 hours for this all to take place. I just get knots in my stomach every thing he has to go through all of this. The big question is if he will need surgery on the left side of his brain as he did last August with the right side. It will take a few days to get the results and then we will need to have them sent up to Boston to Dr. Scott.
Everything else is fine in the Zimmerman household. Erik (dad) is working in his garden planting pumpkins and what ever else. Erik will be helping with the road side stand again this year.
As I pick up on Tuesday here, I want to tell every one what a wonderful event the Shannon Daley Memorial Fund Golf Tournament was last night. What an amazing evening. They are such a fantastic group of men. They have worked so hard for the event and we will be eternally grateful for all they have done for our family. We full well intend to help at there next fund raiser in January for the next families selected.
Please keep Erik in your prayers today as he goes through these tests today. I set here thinking and it just breaks my heart what he will be going through again today. He is such a trooper about all of this. He knows as he has done this so many times before. He doesn’t like it but you will hear no complaining from him. He just knows what needs to be done. All we want to hear are the words “No trace of cancer” and good news about the left side of his brain with the blood vessels issues. Please storm the heavens today with prayers for our son. He has to go through so much yet I praise God for his healing and that Erik is here, happy and healthy.
I will update as soon as I hear from the oncologist when the results are in. Hopefully it will be by Friday. The wait is always the hardest time for us.
One more prayer request, this time it is for me. I have been asked to give a testimony at the Hopewell Methodist this Sunday. I am nervous as I just want to do justice when speaking about prayer and faith. I would be no where with out it and I need to find the right words that are from the heart!
Norma
We will be taking him out to dinner tonight with family and a few of his friends.
His choice is TGI Friday’s. He loves the Jack Daniel wings and sesame chicken.
We are so excited for him. 16 is a great age especially for him.
All else is well in the Zimmerman household. We are preparing for Jason’s 8th grade graduation. The party is planned for June 16th. We are praying for good weather!
I have been asked to be the guest speaker at the luminary candle ceremony this Friday night at the Relay for Life in Flemington. This should be good!!! I still get some what nervous when speaking to large groups of people. Research and awareness is so important to be and that’s how I am able to do this. Erik’s journey is truly a story of HOPE! I just want to do it justice!!!!
Please continue to pray for all of Erik’s testing on June 26th. MRI time is always stressful but we really want to find out about the blood vessel issues on the left side of his brain and what they will decide.
Please pray for Meghan and she is resuming her chemotherapy at CHOP Her website is www.caringbridge.org/visit/meghannorris
Happy Friday to everyone!
Erik’s MRI has been set for June 26th. This will be with anesthesia for MRI/MRA of brain and spine. He has to be there by 8:45 in the morning. I will be so glad when this test is over and we know more about the blood vessels on the left side of his brain. It will take some time after testing is done as we will need to have the results send up to Boston to Dr. Scott. He’s our expert on all of this.
Erik has been having a great time the last half of the school year. He has made new friends and loves all of his teachers. He seams to be a happy young man right now.
He will be going on his interview this coming week to Shop Rite with the lady from Project Hire. He also goes for orientation this Saturday at Tabby Place to be a helper with the animals there. He is truly starting to branch out and mature. He will be 16 next Thursday. We will be taking family and some of his friends out to dinner to celebrate.
Jason will be graduating 8th grade this month. He is really enjoying his last year of grammar school. His class went to Hershey Park today and the weather is great for the trip.
Please continue to pray for Meghan Norris. Her last MRI that she had this week showed that there were only two images left in the brain MRI. They think that could be calcium deposit. This family so deserves this miracle.
Below is some information about the golf tournament that is being help in June and we have been picked as one of the recipients of the fund raiser. We are so very grateful for the help they are giving us.
_______________________________________________________________________
The Shannon Daley Memorial Fund is so looking forward to helping you and the family with our golf outing on June 25th. Erik is special and we are delighted to help. For those that want to help and read more, please go to shannonfund.org. Click on current events and you will see the PDF on our event. Please contact me if you have questions. Please send donations to Shannon Daley Memorial Fund PO Box 1271 Whitehouse Station NJ 08889. In the memo section, please note Erik Zimmerman. Thanks in advance for your generosity.
Paul McGill - Vice President - Shannon Daley Memorial Fund
Whitehouse Station, NJ USA - Thursday, May 31, 2007 11:42 AM CDT
______________________________________________________________________
One last bit of information for now. The ride4erik will be help on September 8th with a rain date of the 9th at the Hunterdon County Agricultural Fair Grounds. More information to follow. The money raised at this yearly event will go to Pediatric Brain Tumor Research.
Have a wonderful weekend and much love to every one that reads this update.
Norma and family
We will do what ever is needed for his continued good health. We are waiting to hear back from scheduling about a date.
Erik has been very happy lately. He loves his teachers he has for the second half of the year and he is making a few new friends. He has started going to youth group more and the also the old youth group. We are thrilled. When he went to see Alan last week (clinical physiologist) he told me that Erik has a lot of good things happening right now.
Erik sees Alan alone and Mom waits in the waiting area. We are so thankful for all the good that is happening for him right now.
The lady from Project Hire has met with Erik twice. She has helped him fill out his application for shop rite again and also to be a volunteer at Tabby Place. After talking to Erik for a while she was impressed how much he loves animals. Shop Rite will be temporary and she plans on getting Erik a job working with animals. We are all thrilled about this. Working at Tabby Place will be experience and can be put on his resume. Tabby Place is only about a mile from our home and they house cats that are ill and older cat that they are trying to find a home for. Things are looking up for Erik right now and he is extremely happy.
At our trip to CHOP Monday we went to see Meghan Norris. www.caringbridge.org/visit/meghannoris she looks great! They are asking for prayers for Meghan as she is having a very important MRI on May 29th. She is so precious and sweet. Seeing her reminds me so much of the beginning of our Journey with Erik. I thank God for all that he has accomplished in the last 13 years. Tomorrow marks the 13th anniversary of Erik finishing his treatment. This day pulls at my heart so much. I/we truly know how lucky we are to have him here with us. We know his healing came from the hand of God. We have scene so many young children lose this battle and the pain a family goes through with this.
Please support us in the ride4erik in September. We are having our first information meeting tomorrow night. I will continue to keep every one posted on the progress.
There is also another very appreciated and exciting going on. We were approached by the Shannon Daley Fund. www.shannonfund.org They are having a golf tournament in June and would like our family to be one of the families that receive part of the money raised. We are so grateful for this. There will be more information to follow on this in the next few days. We do so appreciate all of there kindness and wanting to help. It’s a hard road but it is all worth it to see the smile on my sons face and to be celebrating the 13 years of being cancer free.
Norma.
Some exciting news at the Zimmerman’s. Erik is going to be starting to work with in the next few weeks. The lady from Project Hire came to see us last night. All forms are filled out and only a few left. Project Hirer supplies some one to go with Erik for training. He will have this training until the point he is ready. It’s even better then that. After getting all of Erik’s interests she feels his love for animals could lead him in to his next job. We are all very excited. She was such a wonderful person.
I can’t believe it is May already. We are now starting to think about Jason’s graduation. We will be having a picnic party to celebrate. My baby is going to High School!
I was wrong when I said that Erik didn’t have any doctor appointments until June. He has to go to see the neurologist on the 14th at CHOP. I am real interested to see what she will have to say about the last MRA and why she thought is was worse on the left side of Erik’s brain. CHOP will be scheduling the MRI/MRA soon for June. It’s time to start getting nervous again. Erik had over heard his Dad and I talking abut the situation of the left side of his brain and the blood vessels. He asked me if he would have to go to Boston again. I tried to explain about it all and just said I wasn’t sure. He told me that it was alright. The surgery was no big deal!!!!!! Can you imagine that? No big deal! They removed part of his scull and put a titanium plate in. He is truly the bravest and strongest person I have very known. I love him dearly!
Please keep our family in your prayers for Erik’s continued good health.
Pray for Meghan as she starts her 3rd round of chemo
www.caringbridge.org/visit/meghannoris
Pray for Penelope she is at the ending stages of her cancer. There was a piece in the Wall Street Journal on Tuesday about her father fighting for experimental drugs.
www.caringbridge.org/ny/penelope
Pray for Genna and her upcoming MRI
www.caringbridge.org/nj/gennahenna
Also for my friend Luisa Renda who is going through treatment for stomach cancer. She will be having testing done next week.
Erik is doing real well. He doesn’t have any dr. appointments now until the he goes for all of the testing in June. That will be an MRI/MRA of the brain and an MRI of the spine.
This Sunday we will be celebrating a few birthday’s. My son Steve, daughter Jennifer and daughter-in-law Alison. They are asking for Erik’s (DAD) famous spaghetti and meatballs. We will probably be having the celebration at my Mom’s house so that it will be more comfortable for her.
This weekend if you could please pray for Meghan Norris. She will be having her first MRI since she started her treatment a few months ago.
www.caringbridge.org/nj/meghannorris This Mri is extremely important.
Also, please keep in your prayers my friend Luisa Renda. She is now going through treatment for stomach cancer.
With Love
Norma
It is so beautiful. We will post pictures when we get home. Erik JR.s favorite place is the evening dinning room. They have taken a liking to him and wait on him hand and foot. It's been great and I think my dad is having a great time.
With love
Norma
There has been a lot of sad news from the Pediatric Brain Tumor list I belong to. A young man who I have been feeling close to his family has passed away. His name is Michael Gallagher. He relapsed a few months ago and passed away as a result of the stem cell transplant he was receiving. www.caringbridge.org/ny/michaelgallagher
I have been part of this on line group for the past three years. There are so many children that are having a re-occurrence and so many that have lost there battle with cancer. It is so heart breaking. These kids are 3-4 and some times longer out of treatment. I am getting such a clear picture of what they mean when they say five year survival rate. Again it brings me back to knowing that Erik’s healing came from the hand of God! Erik is healthy and happy and doing well in school. Yes there are some problems and some things I pray I could change. His thinking it is cool to curse is high on my list. Maybe I am not a strict enough parent. Maybe I just don’t know how to be hard on him after he has been through so much in his life. I want everything for him. I want him to realize that his life and his healing is a gift from God. He has such a story to tell if he could just mature enough to tell it. Of course he is only 15 and he does need to mature. Praying for life to be good for him and that he will be a fantastic inspiring young man. He sure is to me.
Our cruise is only a little over a week away. My Dad sure is getting excited….me to! We have to start getting the summer clothes out this weekend. Start packing. I really can’t wait for some time off!
Please continue to pray for Meghan Norris. You can check in on her at www.caringbridge.org/visit/meghannorris also for a young girl that is only 17 and her name is Stevie. She has had a reoccurrence and isn’t doing well!
There has to be a cure for the horrible cancer! That is my personal dream!
Our appointment with Dr. Moshang (endocrinologist) went well. I had updated that Erik had gone off the growth hormone in November and was tested in January. He failed the test and he is totally growth hormone deficient. This was caused by the radiation he received 13 years ago. The medical problems that come from being growth hormone deficient are: It gives you a greater chance of heart disease in your 40’s or 50’s, it can be the cause of osteoporosis, and it also causes high cholesterol. They want to put him back on a small dose of growth hormone that he will receive daily for the rest of his life. They feel that this helps these things but they have not been doing this treatment enough years yet for it to be proven. They do know that it helps with fatigue and helping to have more energy.
We stopped in to see Meghan Norris yesterday. What a beautiful little girl. Heart breaking what she and her family have to go through. You can check on Meghan and her progress at www.caringbridge.org/visit/meghannorris
Please also pray for another young girl that was dx’ed several years ago with medulloblastoma (same as Erik) and she has recently had a reoccurrence. She is not doing well. Her Mom is asking for a prayer vigil this Saturday evening. She is asking for every one to prayer for complete healing on earth for Stevie. Stevie is about 15 years old. A beautiful girl. The time is 6PM to pray. We need to storm the heavens with prayers for Stevie. Remember 6PM
Also pray for Michael who also had medulloblastoma and had a reoccurrence. He is now going through a stem cell transplant. He is having a lot of problems now as well. His web site is www.caringbridge.org/ny/michaelgallagher If you check in on Michael please tell him that Erik sent you.
The past week there has been a lot to absorb with Erik’s current medical changes. Please pray for peace and healing for Erik.
Norma
We know that Erik is in the best of hands with Dr. Scott and we trust his opinion completely. So now we are back in the worry of Erik having a stroke. The fear never went away; it was just not as serious as it is again. My heart breaks for him and all he has to go through just to have a semi normal life. What others take for granted. Yet even though Erik is having these problems I know we are blessed. Another young girl passed away this morning from medulloblastoma (brain cancer). Her mom belongs to the same on line group that I do. Rachel was only 14 years old. Please keep this family in your prayers. Just this year so far there have been about 12 children that have lost there battles with cancer. This whole journey is so hard and I don’t know how many one could do this with out having faith in God.
Also, please continue to pray for Meghan Norris. Her website is www.caringbridge.org/visit/meghannorris. She is only 5 months old and is being treated at CHOP. Erik has a few appointments next Wednesday and we plan on stopping in to visit Meghan and her family.
Please keep Erik in your prayers that he continues to have good health with no complications, that we can get this recent problem taken care of with out his actually, having a stroke. We continue forward. It doesn’t matter what we have to do to give Erik what he needs…he will have it.
Norma
All is moving right along at the Zimmerman household. We are counting the days until we go on our cruise. My Mom and Dad are getting exited as well.
Please continue to pray for Little Meghan Norris. You can visit her at www.caringbridge.org/visit/meghannorris.
Norma
3-4 hour long. Sedation will only keep him out for about 1-2 hours and that is with giving him the maximum about of sedation for his body. They did get the brain done but now he will have to go back for the spine. Poor kid! Erik Sr. was so angry! He will miss school today because the sedation really takes a while to leave his body totally. He is very unstable on his feet when he has this. He came home and went right to bed and was still sleeping at 6 this morning. I did wake him before I left this morning. I told him that Kevin (youth director) was going to stop by and see him today and he was totally happy about that. Thanks Kevin!!
Now to reschedule for the Spine. Erik is go have an angiogram in August. For that he also needs anesthesia so we are hoping they will put the two together. It’s just never easy for Erik.
There are a lot of good things happening for him though. Last Saturday we had the pleasure of meeting a young lady that had the same cancer that Erik did. She was diagnosed 8 years ago and is doing fine now. Dad, Erik and I went to have lunch with Katilyn and her mom and dad! He really enjoyed this and wants to do this again. I had a wonderful time meeting the Prasnal’s. Fantastic family and it is so wonderful to set and talk to people that totally understand what you have been through as they have traveled the same journey.
I am also asking for prayers for another family. I have recently come in contact with another family that there daughter was just diagnosed with a brain tumor. Her name is Meghan and she is only five months old. She is also being treated at CHOP and they are from the Princeton area. Please pray with all of your heart for this sweet child that is starting this journey and for her parents to receive such strength from God!
Please continue to keep Erik in your prayers for continued good health and healing.
Norma
hard.
Please keep Erik in your prayers today! Also, a little girl named Meghan. She is only 5 months old and was diagnosed with a brain tumor a few weeks ago. She is being treated at CHOP.
Not much else to update right now as my mind is totally on Erik and the testing he is going through right now.
Erik's Journey
Erik was born on June 7 of 1991. He started out his life a perfectly happy and healthy little boy. He grew and progressed wonderfully threw the first year. When he was just starting to walk is when every thing really started to show something was wrong. He went from doing every thing in life early to a stand still and then wouldn’t even stand and put weight on his feet. Then we started with getting sick to his stomach every morning and loosing his balance and falling. After many doctor visits with no answers other then a stomach virus we started to get really concerned and pushing our doctor. After visits with the ENT for inner ear infections we went to Children’s Hospital of Philadelphia to a neurologist. They did an EEG of the brain that showed nothing wrong and they were looking at a possibility of a muscular disease. They decided to do an MRI of the brain just to make sure. We went threw with the MRI and went home. The next day we received a call that changed Erik’s live forever.
On November 13th of 1992 at the age of 17 months old, our little boy was diagnosed with medulloblastoma. This is cancer of the brain and spine. We were on stand by to be called when there was a vacant bed at Children’s. He was admitted on November the 15th and received surgery to remove the tumor on the 17th. Erik spent about two and a half weeks in the hospital and had received one more surgery. They needed to put a shunt in for drainage from the brain into the stomach.
It was decided by his team of doctors that the cure for Erik was radiation to the brain and spine. They do not do radiation to children under three because of the damage it will do. It was decided that he would receive a new protocol from St. Jude’s Research Hospital of chemotherapy to hold back the cancer until he turned three.
Erik went home to recover so he would be able to start his treatment before the end of the year. On December 12th Erik received his first round of Chemo therapy. It wasn’t until he came home that he started to feel the effects of the chemo. His medicines where changed and new ones started and things did start to improve for him. He was scheduled to start his second round of chemo on January 11th. On January 7th Erik received the perfect gift. His baby brother Jason was born. Jason has surely been a total source encouragement and joy to Erik threw the years. Erik always worked a little bit harder and pushed him self a little bit more just to keep up with his brother. We had chosen the name Jason with out looking up the meaning. When we did look it up we discovered it means “The healing one”. That shows how God is always working and watching over us in life.
Erik went threw the next 14 months of treatment and he did well with everything. Every three months they would do a series of testing to make sure all is well and his body wasn’t be harmed too much from the heavy doses of chemo. It was in January of 1994 that it was discovered that Erik had a slight hearing loss from the chemotherapy that he was receiving. All treatments where halted at that time. They did some more testing and decided on stopping the chemo and starting the radiation. The time had come. The radiation was hard on him but he got threw it. On May 17th 1994 at 11AM Erik finished all his treatment. He has been cancer free ever since.
Erik’s MRI/MRA will be next Wednesday (2-21) in the am. Please keep him in your prayers, especially at this time. No matter how many years he is out of treatment it is still a stressful time. The MRA will give them some idea of how the blood vessels are doing from the surgery he had last August. The real look at this will be in August when he has an angiogram. Erik will need to have anesthesia for this study as it will take 3-4 hours. It’s kind of hard to lay still for that long. His yearly Long Term Survivors Clinic appointment will be February 28th. Hopefully we will get the results of the MRI/MRA prior to the 28th. You never know.
Erik is now in the process of filling out working papers. This had to go threw the school. He will get a job at Shop Rite but it is not an over night things, especially because he has disabilities.
One more bit of exciting news. My Dad has decided to take our family on a cruise. WOW! I am the excited one. He wants to thank us for how we help them with doctor appointments and prescriptions etc. Also with my grand mother before she passed away in December. I try to tell him/them that it is our pleasure to help them and how they have always helped us. It’s what a family does. I am so excited! He is also taking my brother and Marilyn.
My Dad is going to have such a fantastic time. We will be going the week prior to Easter. This all happened so quickly. He had told me just a few weeks ago that his traveling days were over how he couldn’t do it with my mom and all. I thought a lot about that so a few days later I was teasing him about a cruise. He could just plush my mom around in her wheel chair. He loved the idea and that is when he said “yes that’s good, how about if you, Erik and the kids come as well”. LOVE IT!
Another bit of excitement…..this weekend we are going to meet and have lunch with a young lady and her mom form the on line group I belong to. This is a group of children that had the same type of pediatric cancer that Erik had. This is a medulloblastonma which is cancer of the brain and spine. This young lady is 18 and has been threw the same treatment and journey that Erik has. This will be the first person he has ever met this has been threw when he has. I am so excited to meet Mom and daughter. This will be Saturday afternoon.
Jason will be leaving later this afternoon for a retreat with the youth group. He is excited about this and I am excited for him.
Please keep Erik and my family in your prayers this coming week.
Love you all!
Norma
Erik's Journey
Erik was born on June 7 of 1991. He started out his life a perfectly happy and healthy little boy. He grew and progressed wonderfully threw the first year. When he was just starting to walk is when every thing really started to show something was wrong. He went from doing every thing in life early to a stand still and then wouldn’t even stand and put weight on his feet. Then we started with getting sick to his stomach every morning and loosing his balance and falling. After many doctor visits with no answers other then a stomach virus we started to get really concerned and pushing our doctor. After visits with the ENT for inner ear infections we went to Children’s Hospital of Philadelphia to a neurologist. They did an EEG of the brain that showed nothing wrong and they were looking at a possibility of a muscular disease. They decided to do an MRI of the brain just to make sure. We went threw with the MRI and went home. The next day we received a call that changed Erik’s live forever.
On November 13th of 1992 at the age of 17 months old, our little boy was diagnosed with medulloblastoma. This is cancer of the brain and spine. We were on stand by to be called when there was a vacant bed at Children’s. He was admitted on November the 15th and received surgery to remove the tumor on the 17th. Erik spent about two and a half weeks in the hospital and had received one more surgery. They needed to put a shunt in for drainage from the brain into the stomach.
It was decided by his team of doctors that the cure for Erik was radiation to the brain and spine. They do not do radiation to children under three because of the damage it will do. It was decided that he would receive a new protocol from St. Jude’s Research Hospital of chemotherapy to hold back the cancer until he turned three.
Erik went home to recover so he would be able to start his treatment before the end of the year. On December 12th Erik received his first round of Chemo therapy. It wasn’t until he came home that he started to feel the effects of the chemo. His medicines where changed and new ones started and things did start to improve for him. He was scheduled to start his second round of chemo on January 11th. On January 7th Erik received the perfect gift. His baby brother Jason was born. Jason has surely been a total source encouragement and joy to Erik threw the years. Erik always worked a little bit harder and pushed him self a little bit more just to keep up with his brother. We had chosen the name Jason with out looking up the meaning. When we did look it up we discovered it means “The healing one”. That shows how God is always working and watching over us in life.
Erik went threw the next 14 months of treatment and he did well with everything. Every three months they would do a series of testing to make sure all is well and his body wasn’t be harmed too much from the heavy doses of chemo. It was in January of 1994 that it was discovered that Erik had a slight hearing loss from the chemotherapy that he was receiving. All treatments where halted at that time. They did some more testing and decided on stopping the chemo and starting the radiation. The time had come. The radiation was hard on him but he got threw it. On May 17th 1994 at 11AM Erik finished all his treatment. He has been cancer free ever since.
Please keep Erik and my family in your prayers during the next month. It is truly a very stressful time.
We have not heard from the endocrinologist yet about he testing Erik had done in January. Hopefully soon!
Erik is going this afternoon for an interview at Shop Rite in Flemington. He really wants to get out there and start making a pay check. We are proud of him for this. He is a very ambitious young man.
He did very well in all of his exams. He got a 98 in English, 96 in math and a 90 in science. Good going Erik.
I will update more after receiving the test back form his blood work.
Thank you for stopping by!
Norma
Erik's Journey
Erik was born on June 7 of 1991. He started out his life a perfectly happy and healthy little boy. He grew and progressed wonderfully threw the first year. When he was just starting to walk is when every thing really started to show something was wrong. He went from doing every thing in life early to a stand still and then wouldn’t even stand and put weight on his feet. Then we started with getting sick to his stomach every morning and loosing his balance and falling. After many doctor visits with no answers other then a stomach virus we started to get really concerned and pushing our doctor. After visits with the ENT for inner ear infections we went to Children’s Hospital of Philadelphia to a neurologist. They did an EEG of the brain that showed nothing wrong and they were looking at a possibility of a muscular disease. They decided to do an MRI of the brain just to make sure. We went threw with the MRI and went home. The next day we received a call that changed Erik’s live forever.
On November 13th of 1992 at the age of 17 months old, our little boy was diagnosed with medulloblastoma. This is cancer of the brain and spine. We were on stand by to be called when there was a vacant bed at Children’s. He was admitted on November the 15th and received surgery to remove the tumor on the 17th. Erik spent about two and a half weeks in the hospital and had received one more surgery. They needed to put a shunt in for drainage from the brain into the stomach.
It was decided by his team of doctors that the cure for Erik was radiation to the brain and spine. They do not do radiation to children under three because of the damage it will do. It was decided that he would receive a new protocol from St. Jude’s Research Hospital of chemotherapy to hold back the cancer until he turned three.
Erik went home to recover so he would be able to start his treatment before the end of the year. On December 12th Erik received his first round of Chemo therapy. It wasn’t until he came home that he started to feel the effects of the chemo. His medicines where changed and new ones started and things did start to improve for him. He was scheduled to start his second round of chemo on January 11th. On January 7th Erik received the perfect gift. His baby brother Jason was born. Jason has surely been a total source encouragement and joy to Erik threw the years. Erik always worked a little bit harder and pushed him self a little bit more just to keep up with his brother. We had chosen the name Jason with out looking up the meaning. When we did look it up we discovered it means “The healing one”. That shows how God is always working and watching over us in life.
Erik went threw the next 14 months of treatment and he did well with everything. Every three months they would do a series of testing to make sure all is well and his body wasn’t be harmed too much from the heavy doses of chemo. It was in January of 1994 that it was discovered that Erik had a slight hearing loss from the chemotherapy that he was receiving. All treatments where halted at that time. They did some more testing and decided on stopping the chemo and starting the radiation. The time had come. The radiation was hard on him but he got threw it. On May 17th 1994 at 11AM Erik finished all his treatment. He has been cancer free ever since.
Today and tomorrow Erik is taking the exams in High school. I was studying with him last night and early this morning. He is doing fantastic. He will probably get a higher grade then I would taking the same test. He didn’t have to study too much for his Math exam as he is on top of all that. It was science that he was studying so hard at. I know he will do well at this. Just seeing the smile on his face as I would ask him the questions from the study guide and his knowing the answers. I am so proud of him.
He had the testing done last week at CHOP. They took about 11 viles of blood for the arginine/geref test. We haven’t heard anything back yet, hopefully with in the week.
Erik is now going to Shop Rite to apply for a job. This is his idea. He loves to make money and no doubt he will be a hard worker. They do hire people with disabilities. This is a hard one though because in some ways Erik is brighter then most and yet in other ways his disabilities are there. We are setting up an appointment to go in with him to talk to the HR Manager. This will be a very good experience for him and we are grateful to shop rite for working with us on this.
I have been doing some brain storming with Suzie Gherardi and a few others. The fund raiser done for my family last August, RIDE4ERIK…..we are going to do that again this year and hopefully in years to come. All money raised will go to pediatric cancer research. (Preferably pediatric brain tumor research) We are still in the planning of this but I am THRILLED. This has been my secret dream for so long. Please keep this project in your prayers for it to be come successful.
Not too much else going on. Kind of quiet now and that is good!
Heaven has a new angel! This is a little girl from the two online groups I belong to. If you would like to stop and visit her site and let her Mom know you are thinking and praying for her please do.
www.caringbridge.org/ga/catie
Please continue to pray for Erik’s good health and continued success.
Carol Aron-awaiting test results from lung cancer
Lannette in SC- Loss of Dakota just two weeks ago today.
Bruce Housel- My cousin with Leukemia
Erik's Journey
Erik was born on June 7 of 1991. He started out his life a perfectly happy and healthy little boy. He grew and progressed wonderfully threw the first year. When he was just starting to walk is when every thing really started to show something was wrong. He went from doing every thing in life early to a stand still and then wouldn’t even stand and put weight on his feet. Then we started with getting sick to his stomach every morning and loosing his balance and falling. After many doctor visits with no answers other then a stomach virus we started to get really concerned and pushing our doctor. After visits with the ENT for inner ear infections we went to Children’s Hospital of Philadelphia to a neurologist. They did an EEG of the brain that showed nothing wrong and they were looking at a possibility of a muscular disease. They decided to do an MRI of the brain just to make sure. We went threw with the MRI and went home. The next day we received a call that changed Erik’s live forever.
On November 13th of 1992 at the age of 17 months old, our little boy was diagnosed with medulloblastoma. This is cancer of the brain and spine. We were on stand by to be called when there was a vacant bed at Children’s. He was admitted on November the 15th and received surgery to remove the tumor on the 17th. Erik spent about two and a half weeks in the hospital and had received one more surgery. They needed to put a shunt in for drainage from the brain into the stomach.
It was decided by his team of doctors that the cure for Erik was radiation to the brain and spine. They do not do radiation to children under three because of the damage it will do. It was decided that he would receive a new protocol from St. Jude’s Research Hospital of chemotherapy to hold back the cancer until he turned three.
Erik went home to recover so he would be able to start his treatment before the end of the year. On December 12th Erik received his first round of Chemo therapy. It wasn’t until he came home that he started to feel the effects of the chemo. His medicines where changed and new ones started and things did start to improve for him. He was scheduled to start his second round of chemo on January 11th. On January 7th Erik received the perfect gift. His baby brother Jason was born. Jason has surely been a total source encouragement and joy to Erik threw the years. Erik always worked a little bit harder and pushed him self a little bit more just to keep up with his brother. We had chosen the name Jason with out looking up the meaning. When we did look it up we discovered it means “The healing one”. That shows how God is always working and watching over us in life.
Erik went threw the next 14 months of treatment and he did well with everything. Every three months they would do a series of testing to make sure all is well and his body wasn’t be harmed too much from the heavy doses of chemo. It was in January of 1994 that it was discovered that Erik had a slight hearing loss from the chemotherapy that he was receiving. All treatments where halted at that time. They did some more testing and decided on stopping the chemo and starting the radiation. The time had come. The radiation was hard on him but he got threw it. On May 17th 1994 at 11AM Erik finished all his treatment. He has been cancer free ever since.
Today and tomorrow Erik is taking the exams in High school. I was studying with him last night and early this morning. He is doing fantastic. He will probably get a higher grade then I would taking the same test. He didn’t have to study too much for his Math exam as he is on top of all that. It was science that he was studying so hard at. I know he will do well at this. Just seeing the smile on his face as I would ask him the questions from the study guide and his knowing the answers. I am so proud of him.
He had the testing done last week at CHOP. They took about 11 viles of blood for the arginine/geref test. We haven’t heard anything back yet, hopefully with in the week.
Erik is now going to Shop Rite to apply for a job. This is his idea. He loves to make money and no doubt he will be a hard worker. They do hire people with disabilities. This is a hard one though because in some ways Erik is brighter then most and yet in other ways his disabilities are there. We are setting up an appointment to go in with him to talk to the HR Manager. This will be a very good experience for him and we are grateful to shop rite for working with us on this.
I have been doing some brain storming with Suzie Gherardi and a few others. The fund raiser done for my family last August, RIDE4ERIK…..we are going to do that again this year and hopefully in years to come. All money raised will go to pediatric cancer research. (Preferably pediatric brain tumor research) We are still in the planning of this but I am THRILLED. This has been my secret dream for so long. Please keep this project in your prayers for it to be come successful.
Not too much else going on. Kind of quiet now and that is good!
Heaven has a new angel! This is a little girl from the two online groups I belong to. If you would like to stop and visit her site and let her Mom know you are thinking and praying for her please do.
www.caringbridge.org/ga/catie
Please continue to pray for Erik’s good health and continued success.
Carol Aron-awaiting test results from lung cancer
Lannette in SC- Loss of Dakota just two weeks ago today.
Bruce Housel- My cousin with Leukemia
Erik had his eye check up last Friday and all is well there.
The upward gaze in his eyes is back to normal. The surgeon was afraid that there was some damage there from the fluid back up when his VP shunt was malfunctioning. We are all pretty happy about that.
Erik started intramural basketball at school yesterday. He loves it.
That is the one sport that he enjoys and is really good at. This will also get him out around other kids as well. His best friend Kevin is going as well. He is thrilled.
On the on group I belong to for kids that have had or have brain tumors. One of the kids that we were real familiar with for the past probably four years just passed away yesterday. I am so upset about this. He had finished his treatment several years ago for medulloblastoma (what Erik had as well) and he was clear for a number of years. Then it all came back about six months ago and leukemia as well. My heart breaks for his Mom. She is such a woman of faith and such a wonderful Mom. Dakota’s web site is www.caringbridge.org/sc/dakota if you would like to read about this terrific young man. While you are there sign the guest book just to let Mom know you care. Tell them that Erik Z sent you.
In the beginning of Erik’s journey I had read so much about finishing treatment and getting to the five year mark. Wow, in just the past year I have known more then a few children that had finished treatment and been done for several years and then it came back and took there life very quickly. Its un-nerving how this killer called cancer actually works.
I also have a cousin Bruce that has leukemia. As much as I have learned about cancer I still don’t understand how this can happen to so many people and still there is no cure for everyone.
I have some more ideas up my sleeve about fund raising. There has been some talk and I will certainly keep every one posted on this. My family has supported the American Cancer Society for about 10 years. This is a great organization but I/we are thinking about maybe starting something that is for pediatric cancer and most of all pediatric brain cancer. This is truly my deepest desire at this time.
Erik’s next appointment is January 16th. He will be receiving some test now since he finished his growth hormone in November. This will tell if he still needs to be started on a small dose just for his bone support. He is now done growing and the growth hormone won’t help that any more but he may still need it for other reason.
Erik continues to do well in school. We just had an IEP meeting this week. They are very pleased with him. I know we had some concerns last year about Erik going to such a big school. I am so happy to say that Erik is in the right place. They are wonderful to him and getting him everything he needs to succeed. I am so grateful to all of them especially his case manager Adele Lewis. We have truly met the most special people along this journey with Erik.
I will update after Erik next appointment on Tuesday.
Norma
Prayer Requests
Please continue to pray for:
Erik and his health and success as he goes through life.
Dakota Gay and family
Bruce House my cousin with leukemia
Carol Aaron who had test last week to see the progress after treatment.
All unspoken prayer from the heart
On December 27th my Grandmother passed away. She was 99 so it was truly her time to go home. It was still a very difficult time for my family. I will miss her so much. I was always very close to my grand mother. We had gotten a call from the nursing home at 4:45 on Wednesday and we went over right away but she has passed away just a few minutes before we got there. This past week has truly been a healing time for us. She will be missed but there are so many fantastic memories to hold on to.
Erik is doing very well. Today is his first day back at school. Hunterdon Central is starting an intramural basketball club. Erik is thrilled about this. He will be able to play his favorite sport. He is branching out here to be saying after school and taking a late bus home. I am so happy for him. In a few weeks he will also be part of the church basketball team as well. Kevin Ireland, the youth director is doing this for the boys.
Erik has an ophthalmology appointment this week. The nuro surgeon was concerned about his upward gaze with his eyes since the VP shunt revision was done in October. We are praying that there was no damage from the problem with the fluid back up at that time. Of course February is MRI/MRA time. Even after all of these years it is still a very stressful time. The MRA should tell a bit about wither the surgery was successful that he had last August.
Please continue to keep Erik in your prayers for all of his upcoming appointments.
Continued prayers for my Mom, She did well threw the funeral of her mother. The Alzheimer’s is really taking a lot away from her. My Dad continues to do well.
Well it’s only 7:30 and all gifts are opened already. Kids are happy so Mom and Dad are as well. Every one has gotten every thing they wanted. Jason is standing behind me smiling! It’s such a wonderful feeling to see the kids so happy. The whole family is coming for dinner today. Having every one together is great!
Yesterday was a very bitter sweet day. I went to see my grand mother and you can see it is truly the end for her in this life. She is so frail and weak. She wouldn’t even wake up when I was there. Her nurse, Mary Ann told me that she is getting morphine more often for pain. She is calling out in her sleep. Pop! I think she must be seeing her father waiting for her. Mary Ann said that often they will pass in there sleep. I plan on going back today just to set with her. I will miss her so much but I know it is time.
Yesterday afternoon we had two very special visitors. Mr. and Mrs. Santa came with presents for the family and for Spencer. He was so amazed to see Santa. Such joy and happiness was present. Mr. and Mrs. Santa were our dear friends Joe and Suzie Gherardi. Erik and I both are amazed by their generosity. Not only the gifts for all but the time to go and take the extra steps in giving happiness of dressing up for the extra treat.
We attended candle light service at Kirkpatrick which was beautiful. After we went to Steven and Alison to enjoy the evening with there friends (our friends as well) Erik and I are included and become friends with all as well.
This Christmas there is something missing! Nancy and Bill are now down in North Carolina. There not being here today will be one of the low points. They plan on coming home in January for a while so we will surely get together then.
Hoping every one was a wonderful Christmas. Let’s all remember the true meaning of the day!
Love to all!
Norma
Erik went to New York to Radio City Music hall yesterday with one of his classes. When he got home he actually said it was good. I, myself, love going there and I so enjoy the beautiful decorations. We will be taking him Christmas shopping tonight so he can get all of his gifts for people. He would rather be buying for him self. Jason has his school dance. We keep teasing him that we are going to chaperone the dance. He is really enjoying his last year at East Amwell. Next year they will both be at Hunterdon Central.
Erik has been feeling real good and is really starting to improve his attitude with things. We have an IEP meeting at Central next Tuesday. They are moving him up a level for social studies as he is doing real well. They are taking him out of the EQWIPS class room. He is main streamed for his math and science these past two semesters. He was in the EQWIPS class for reading and language. He did so well in there that they want to move him out for his social studies. We are thrilled at this. One of his strong points is that he so desperately wants to do well. He puts every thing in to his work.
My Grand mother is still holding her own. I think I had said that they have called hospice in. She really didn’t like this as it is new people. It takes her a while to adapt to new faces.
I will close for now and I ask that you continue to pray for Erik and his good health and continued success in school.
I hope every one liked the new pictures at the top of the page.
Norma
Please keep these special people in your prayers:
Carol Aron-Being treated for lung cancer and doing well
Aunt Audrey- Just dx’ed with lung cancer.
Michael Gallagher-preparing for stem cell transplant- 8 years old.
Dakota Gay- I have know his Mom as an on line friend for the past three years. He had medulloblastoma as Erik did. He relapsed with a secondary cancer of leukemia and now his medulloblastoma is coming back. The doctors have told Lannette that it is only a matter of time now and Dak will become heavens newest angel.
Dak is 15 years old.
Next appointment is January 16th. Erik stopped taking growth hormone on November 6th and this test is to see if he still needs the humatrope for his bones. If so he would go back on at a very low dose for the rest of his life. The test is called arginine/geref. Then February he will be having his MRI/MRA. This will give some indication (MRA) how the blood vessels are working in his brain. He will be having a nuro-angiogram in August and that will be the ”tell all” for the success of the surgery he had in August in Boston. It‘s just always so much for him to deal with. I so much wish I could make it all better. There are some issues going on right now that I will talk about in another post later on. We are just so thankful for Erik’s best friend Kevin McPherson. He truly watches out for him always. If all kids could only be this conscious and caring. We have an appointment tonight with the physiologist that he has started to see. I am praying for good things to happen for Erik.
My grandmother is still struggling with life. I know she is 99 but it is so sad to see her this way. I took my parents yesterday afternoon to the nursing home to meet with Hospice. They will start today to see her. Her nurses are taking very good care of her and they are making her as comfortable as possible. This will be more care then she was getting. She has lost so much weight.
Thank you for checking in and please continue to keep Erik in your prayers, he so much deserves to have peace in his life.
Norma
If I could request prayers for:
Carol Aron a dear friend who is almost done with treatment for lung cancer
Audrey Housel, my aunt who has just been dx’ed with lung cancer.
Michael Gallagher- 8 year old preparing for a stem cell transplant.
Erik made out very well this morning with Dr. Ichord. She went over every thing with Erik (Dad) about the surgery in Boston and the recent surgery. Dr. Ichord is Erik’s neurologist. She specializes in strokes in children at CHOP. She and Dr. Scott had never scene any one recover from the surgery that he had in Boston in August so quickly. Neither of them can understand the fact that he took no pain medication for the blood vessel by pass surgery in August. They do not understand his tolerance for pain. Erik signed papers for them to do a study at CHOP on Erik. Her comment was “he is an amazing child”. I am so proud of him and if we can just get the anger issues under control we will all be so happy.
I feel so blessed to have Erik. I know his healing came from the hand of God. Children diagnosed with this cancer as an infant just didn’t make it back 14 years ago. They still don’t have all the success with infants now. The treatment saved Erik’s life but it would not have been possible with out the hand of God.
I am really ready for this weekend. We are having a family portrait taken on Sunday. I was supposed to have a craft demonstration at my house on Sunday afternoon. My friend that is the demonstrator, her son is in the hospital so it is postponed. Please pray for a speedy recovery for Brendon Carrey. This weekend we will be preparing for the Thanksgiving Holiday. My home is screaming---clean me!
Thanks for letting me share my joy of Erik and his recover from both surgeries.
Have a wonderful weekend!
Please continue to keep Erik in your prayers!
Norma
This Friday marks the date that Erik’s cancer journey began. He was diagnosed November 17th 1992. This is 14 years ago. I look back and can’t believe we have come so far. I have so much to be grateful for in the last 14 years.
Erik has hit another miles stone as well. On November 6th he took his last injection of growth hormone. Dr. Moshang his endocrinologist has said that he is now done growing. He is 5”4’ and the growth hormone will not work any more since Erik has hit puberty. He will be going threw some testing in January at CHOP to see if he still needs a low dose of the humtrope for bone support. The date for that test is January 16th. It’s hard to believe that will be next year already.
This Friday Erik will be going to see Dr. Ichord the neurologist at CHOP. So many doctor appointments. I guess we should really be use to that.
All else is the same. My Grand mother is still very frail. I will be going to see her again after work today.
Thank you every one that stops by to check on Erik. Your caring is so appreciated.
Norma
Erik has been dealing with the depression and anger. We have an appointment to night with Dr. Giordano, a psychiatrist in Flemington. I am hoping that there is a way to get all of this anger out and to start to deal with it. He has gotten to the point that he doesn’t want to meet any new people. If he doesn’t already know you he is sure he will not like you. It’s real hard trying to get threw to him. Hopefully we can start to get some good information tonight.
Erik has an appointment on Friday morning with the neurologist in Philadelphia. Real curious as to what she will have to say about all that has gone on with Erik since we say her last in May.
My grandmother is about the same maybe a little worse. She is holding her own. She wasn’t in any pain until yesterday and they have now started her on morphine. I know in my mind that it could be any day but in my heart I don’t want to see her go. I know that is kind of a selfish feeling as she is 99 but I have always been close to my Grandmother.
I will hopefully update more later this week with some encouraging news about Erik state of mind. By the way he is doing real well at Hunterdon Central. They are great to him.
He is going to be moved up a level in English after this semester. Believe me that is terrific news about his progress.
Norma
Please continue to pray for Erik and that we may see some improvement soon.
Pray for a young man named Michael that is prepaying for a stem cell transplant. He is only 8 years old.
Pray for Carol Aron who is doing fantastic as she is going threw her treatment for lung cancer.
We are now looking in to some after school activities that he may be able to join. Hopefully we can find something he may be interested in. He desperately needs to be out making friends. That is one of his problems, he doesn’t want to meet new people he just wants the same people he has always been close to. We were given the number for a physiatrist to talk to about Erik and maybe see the doc for a while. He seams to angry a lot of the time. Usually his anger is directed at me. He is cursing and …well it’s not like he never did that before but it seams to be more and a release for anger right now.
I am told that a lot of the teen survivors of brain cancer end up needing some medication to help them. Especially those that were diagnosed at such a young age. He is looking forward to trick or treat tonight. So glad he has decided to go. As he/they gets older you never know what they will decide about enjoying this evening. Dad will probably go with them as well.
I want to request prayers for my Grand-mother, Grace Housel. She is 99 and will be a 100 in July of 07. She is failing very quickly and I know she has had a long healthy life and happy life as well. It is still so sad to see some one you love leave you. My Mom and Dad went yesterday to see her and called that she seams to be failing quickly. I went to see her last night and spent a few hours at her bed side. My daughter, Jennifer went with me and after we got there she decided to call my son Steve. They have always been so very close with there great-grand mother. I have as well. I sat there thinking of all the past memories. My Grand-mother was always at my side when bringing each child home from the hospital at birth. She also wanted to be the first to hold the new baby. Always supporting me and my children in what ever we did or didn’t do.
I will close for how. I hope every one enjoys Halloween!
Norma
Please pray for:
Erik in his continued good health
Carol Aaron for her continued healing of cancer.
Pat Cregar who is a friend from church that is once again in the hospital
Jean Case, my mom who struggles with the effects of Alzheimer’s.
.
This is Erik weekend:
Friday morning Aunt Nancy and Uncle Billy took him to lunch and then to play pool at there house.
Friday afternoon Kevin Ireland came to take Erik to the mall.
Saturday late morning Spencer came over to spend the night.
Saturday early afternoon Erik’s friend Josh dropped by to visit
Saturday early afternoon Joe Gherardi stopped by and asked him if he would like to go to Hooters!!!!!
Sunday- Sam’s club and Chinese lunch.
He will be going for some blood work on Wednesday at Dr. Bernard’s office in Flemington. Children’s Hospital called last Wednesday after we had gotten home and said that some of Erik’s blood work didn’t look right. They want him to have some blood work over again that reflects on the kidney. I am praying that there is not a new problem brewing. So far his kidneys have been fine. This is one of the issues to watch out for on the Long Term Effects from his treatment
Will update later!
Please continue to pray for Erik and his continued healing
Norma
He is setting and playing video games. It’s a start. He has been through so much in the past two months. Two brain surgeries in two months is enough to be sad. Hopefully this is the end for a while.
All of my thoughts are so jumbled up about all of this. When we went to Boston to see Dr. Scott for his follow up appointment he said that he thought he may be having some problems with his VP Shunt just by the physical he game him. This was eye coordination. He had e-mailed Dr. Fisher (nuro-onc) and Dr. Ichord (neurologist) about his check up and his findings. Dr. Fisher did see Erik a week ago this past Monday. Erik had a
Ct scan and it didn’t show a problem. Now looking back I/we feel that he should have at that point kept him and did some more testing.
Erik started to get worse around Friday when he started taking naps. He took another nap on Saturday and Sunday. Monday morning I started e-mailing all of the doctors at CHOP about this.
When I got home from work they called and said to bring him right in to the emergency room. They did x-ray’s of the brain and chest area and another ct scan. It was obvious there was a problem. The Shunt was broken and had even come undone from the line that runs in to the tummy. All the pressure from the fluid back up was what was making the problems with his eyes. In the emergency room the doctor noticed that his smile was not right. One side of his mouth would go up and the other didn’t. The nuro-surgeon thought at that point that he had a mini-stroke. He said there was no way the fluid back up would effect that area. I think they were a little “pissy” that he had surgery in Boston in August and not Philly. Tough! He had the surgery early Tuesday morning and did well. It’s just that he seams some what depressed. Well, why wouldn’t he be? Two brain surgeries in two months. His nuro-oncologist is a little upset with me as well as I challenged him on the fact that he should have checked it out further the week before.
In thirteen years I have always praised CHOP for the great oncology department and the Long term Follow up clinic. Now I am some what disappointed in them. They are the Long Term Follow up and looking for problems is suppose to be part of there deal. They are the doctors, not Erik and I.
Thank you all for your continued prayers and support.
I will update more later about Erik’s continued progress.
Norma
Hopefully,,,,maybe he will come home tomorrow.]
Will update later.
Norma
Pleae continue to pray for Erik continued healing.
Norma
After many tests they found out that it is his VP Shunt that is bad. He will be having surgery in the am probably around 8 or 9. He is doing fine but we sure need every ones prayers. After the last surgery with the problems with his heart rate and blood pressure dropping I am extremely nervious. Please pray for Erik and a successful surgery.
I will update tomorrow after the surgery is complete.
Norma
I want to update that Erik is doing great! He went to clinic in Philly on Monday and had a CT Scan and physical. All is well. Why he is having problems with his eye movements they don’t know. The good news was no trace of tumor and no problem with his shunt. He will be going to see the neurologist on 11/17 for an appointment.
Below is an update I recently received on Long Term Survivor issues for childhood cancer. It doesn’t end when you hear the word cure.
I want you to know that Erik has had issues in the past and will in the future. Erik and I consider our selves extremely bless to have Erik and will do what ever is needed for his future to be healthy and happy.
www.msnbc.msn.com/id/15224278/
~~~~~~~
Child cancer survivors face bad health as adults
Cure rate is 75 percent, but only 1 in 3 remain healthy, major study finds
Updated: 1 hour, 53 minutes ago
BOSTON - Surviving childhood cancer has its price.
Thirty years after their diagnosis, 40 percent of survivors have a serious
health problem and a third have multiple problems, including stroke, heart
disease and kidney failure, according to the largest study ever done on
cancer survivors who have entered adulthood.
Only about one in three remain healthy.
"This is the dark side to being cured of cancer as a young person," said
Philip Rosoff of the Duke University School of Medicine in a commentary in
The New England Journal of Medicine, where the results will appear on
Thursday.
The findings are a stark counterpoint to the stunning success of treating
many childhood tumors. About 20,000 children are diagnosed with cancer in
the United States each year and while most died 50 years ago, the cure rate
is now greater than 75 percent.
Treatments blamed for later problems
Doctors have known for years that cancer treatments can spark new tumors
later in life.
"It is now clear that damage to the organ systems of children caused by
chemotherapy and radiation therapy may not become clinically evident for
many years," said the research team, led by Kevin Oeffinger of the Memorial
Sloan-Kettering Cancer Center in New York.
The new Childhood Cancer Survivor Study is based on data from 26 medical
centers and marks the first large-scale attempt to assess other, long-term
health problems.
"We've never looked at the big picture for pediatric cancer survivors,"
Oeffinger told Reuters. "While other studies looked at 200 or 300 people,
we're looking at 10,000."
Comparing 10,397 survivors to 3,034 of their siblings, the researchers found
that "cancer survivors were eight times as likely as their siblings to have
severe or life-threatening chronic health conditions."
'Results are alarming'
Survivors of bone tumors, nerve and brain cancer, and Hodgkin's disease, a
cancer of the immune system, faced the highest risk.
"By any criteria, these results are alarming," said Rosoff.
The survivors were 54 times more likely to have required a major joint
replacement, 15 times more likely to have congestive heart failure or
develop a second malignant tumor, 10 times more likely to have heart disease
or thinking problems, and nine times more likely to have suffered a stroke
or kidney failure.
The problems "run the gamut of affected organ systems, hinting that even
more problems may cloud the future as this population ages," Rosoff said.
Traditional age-related problems may hit this group even earlier than
normal.
The source of the health problems varies.
Kidney failure, for example, may come from damage caused directly by
chemotherapy or radiation, or from the multiple infections children can
develop when cancer treatments hamper their immune system, Oeffinger said.
Drugs used to treat those infections may also play a role.
Today's kids may have different set of problems
The risk of stroke may become higher because head and chest radiation may
cause premature thickening of the neck arteries, or changes in the heart
valves can increase the risk that a clot will form, said Oeffinger.
Because cancer treatments have evolved since 1986, the last year the
patients in this study were diagnosed with cancer, the next generation of
survivors may have a "different array of long-term complications," both
because some treatments have become more intense and doctors are more
sensitive to the danger of late-in-life side effects, said Rosoff.
(c) Reuters 2006. All rights reserved. Republication or redistribution of
Reuters content, including by caching, framing or similar means, is
expressly prohibited without the prior written consent of Reuters. Reuters
and the Reuters sphere logo are registered trademarks and trademarks of the
Reuters group of companies around the world.
I want to update that Erik is doing great! He went to clinic in Philly on Monday and had a CT Scan and physical. All is well. Why he is having problems with his eye movements they don’t know. The good news was no trace of tumor and no problem with his shunt. He will be going to see the neurologist on 11/17 for an appointment.
Below is an update I recently received on Long Term Survivor issues for childhood cancer. It doesn’t end when you hear the word cure.
I want you to know that Erik has had issues in the past and will in the future. Erik and I consider our selves extremely bless to have Erik and will do what ever is needed for his future to be healthy and happy.
http://www.msnbc.msn.com/id/15224278/
~~~~~~~
Child cancer survivors face bad health as adults
Cure rate is 75 percent, but only 1 in 3 remain healthy, major study finds
Updated: 1 hour, 53 minutes ago
BOSTON - Surviving childhood cancer has its price.
Thirty years after their diagnosis, 40 percent of survivors have a serious
health problem and a third have multiple problems, including stroke, heart
disease and kidney failure, according to the largest study ever done on
cancer survivors who have entered adulthood.
Only about one in three remain healthy.
"This is the dark side to being cured of cancer as a young person," said
Philip Rosoff of the Duke University School of Medicine in a commentary in
The New England Journal of Medicine, where the results will appear on
Thursday.
The findings are a stark counterpoint to the stunning success of treating
many childhood tumors. About 20,000 children are diagnosed with cancer in
the United States each year and while most died 50 years ago, the cure rate
is now greater than 75 percent.
Treatments blamed for later problems
Doctors have known for years that cancer treatments can spark new tumors
later in life.
"It is now clear that damage to the organ systems of children caused by
chemotherapy and radiation therapy may not become clinically evident for
many years," said the research team, led by Kevin Oeffinger of the Memorial
Sloan-Kettering Cancer Center in New York.
The new Childhood Cancer Survivor Study is based on data from 26 medical
centers and marks the first large-scale attempt to assess other, long-term
health problems.
"We've never looked at the big picture for pediatric cancer survivors,"
Oeffinger told Reuters. "While other studies looked at 200 or 300 people,
we're looking at 10,000."
Comparing 10,397 survivors to 3,034 of their siblings, the researchers found
that "cancer survivors were eight times as likely as their siblings to have
severe or life-threatening chronic health conditions."
'Results are alarming'
Survivors of bone tumors, nerve and brain cancer, and Hodgkin's disease, a
cancer of the immune system, faced the highest risk.
"By any criteria, these results are alarming," said Rosoff.
The survivors were 54 times more likely to have required a major joint
replacement, 15 times more likely to have congestive heart failure or
develop a second malignant tumor, 10 times more likely to have heart disease
or thinking problems, and nine times more likely to have suffered a stroke
or kidney failure.
The problems "run the gamut of affected organ systems, hinting that even
more problems may cloud the future as this population ages," Rosoff said.
Traditional age-related problems may hit this group even earlier than
normal.
The source of the health problems varies.
Kidney failure, for example, may come from damage caused directly by
chemotherapy or radiation, or from the multiple infections children can
develop when cancer treatments hamper their immune system, Oeffinger said.
Drugs used to treat those infections may also play a role.
Today's kids may have different set of problems
The risk of stroke may become higher because head and chest radiation may
cause premature thickening of the neck arteries, or changes in the heart
valves can increase the risk that a clot will form, said Oeffinger.
Because cancer treatments have evolved since 1986, the last year the
patients in this study were diagnosed with cancer, the next generation of
survivors may have a "different array of long-term complications," both
because some treatments have become more intense and doctors are more
sensitive to the danger of late-in-life side effects, said Rosoff.
(c) Reuters 2006. All rights reserved. Republication or redistribution of
Reuters content, including by caching, framing or similar means, is
expressly prohibited without the prior written consent of Reuters. Reuters
and the Reuters sphere logo are registered trademarks and trademarks of the
Reuters group of companies around the world.
Every thing with Dr. Scott went well yesterday. He is amazed at how well Erik did and recovered from the surgery. We will now be following up with Dr. Ichord, neurologist in Philadelphia. He did notice a new problem that Erik may be starting with. We have noticed the past week that Erik’s eyes seam to be…. how do you say bugging out. Like his eyes are opening too much. Dr. Scott noticed that his shunt, which has been in for 13 years with a revision done in 1997 is looking old and a lot of calcium all over it. Now that he is having a problem with his eyes that needs to be checked out. Where the shunt is, that area of the brain controls facial movement. The eyelids and all. He will need to see Dr. Ichorcd and have a CT Scan. What will probably is happen is he will need more surgery. Surgery to replace the shunt. That is our guess. We will have to wait and see. We have so many prayers of gratitude for Doctors that find these problems before it becomes more serious. We need prayers for continued good health for Erik that he is able to continually over come all of these long-term effects from the original cancer.
Will update more later. For now we are in Maine and enjoying the beautiful scenery. Erik and I are going to leave the kids with Aunt Dawn and take a ride to LL Bean in Freeport this morning. Some time alone. Three cheers for Aunt Dawn.
We will be heading home tomorrow and stop with the boys at the NBA store in New York City. This should be an expensive stop. Very well a disappointing stop for two young men that have been told…. only one thing are they allowed to buy.
Norma
As far as the appointment yesterday, he has to be off the growth hormone for two months. So in three months he will be going for more testing at Children’s Hospital in Philadelphia. The testing will tell if he still needs to be on the Humatrope for strengthening of his bones.
Early tomorrow morning we head towards Boston again. Erik has an appointment with Dr. Scott for a follow up from his surgery. I’m not sure if there will be any testing or just meting with the doc.
His appointment is at 1:30 so instead of heading back home we are going to go another 2 ½ hours up in to Maine and see my brother-in-law and his family. We plan on leaving on Saturday to head back home. There are some things going on Sunday that we want to try to make.
There has been some planning and discussion going on with my friend Suzie Gherardi. I am so excited and thrilled about this. We are planning on having a yearly RIDE4ERIK. The money raised will go to Pediatric Cancer Research, preferably Pediatric Brain cancer research. Each year we can choose the organization we want to money to go to. Part of the money can also go to a family that has had a child diagnosed that is in need of help. This has been my dream for so many years. We have worked for years with Relay For Life with the American Cancer Society but I have always wanted to put my efforts in to something in the Pediatric Research area. I am so grate full to Suzie and plan on working my butt off for this. This will be a motor cycle ride in the AM and then a festival type thing in the afternoon. We have decided that Ride4Erik will be in September next year. September is childhood cancer awareness month. I am just so thrilled with all of this, and so very grateful for my friends that will be part of this.
Please keep my family in your prayers for safe traveling on our trip to Boston. Also, for a good report from Dr. Scott.
Please keep the Hope family in your prayers for the loss of there son last week.
Please pray for good test results for the testing my friend Carol Aaron had done on Monday of this week.
Thank you every one for checking in on Erik and continually being a source of support for me and my family.
Norma
I have been on a journey for the past 13 years with pediatric brain cancer. I have scene many things along the way. If it wasn’t for having and putting all of my faith in God I could never have come this far. I truly believe that Nicky is happy and running free in heaven. For him I feel joy and happiness. It’s for his parents that there is such sadness and loss. Even though I believe that they will all be together again one day, it’s just so hard to not have your baby with you. The mourning is for those left behind.
Please pray for the Hope family.
Norma
I was asked last December to be an ambassador for the American Cancer Society to go to Celebration on the Hill. I was honored to be asked. I filled out the form and gave all my references. I was accepted. I fulfilled all of there requirements and went to all of there training sessions. I have a passion for getting the word out and rising money for pediatric cancer research . My family has participated in Relay for Life for the past ten years. About five years ago my family was part of starting a new Relay in our county. My husband and I chaired the first three new relays. The Relay committee’s the first two years consisted of our friends and family. We did great. We raised tons of money in our small community. We took off the past year when I was asked to be part of Celebration on the Hill. I am getting OLD and can only do so much with having a family and a full time job.
Now to get back to my time in Washington. I thank God that I thought to get my information together and to have thought to send all information to my state senator prior to going to Washington DC. I had found a friend that just happened to be his administrative assistant. I am so happy with and proud of our federal senator Rush Hold. He took the time to go over everything I sent him.
I am going to try to cut down on this now to try and make it shorter. I didn’t realize this message would be so long. After training with the ACS for our visit on Capitol Hill with Rush Holt we were to go over, as a team to decide what each of the six people would do. Each person being invited because they could make a difference. Well the meeting of getting together never happened. Threw out our time together I kept asking when do we decide who is doing what, I kept hearing “We will go over that shortly.” I was really getting upset as time was running out. Fact is…..they already had it planned way in advance who was doing what and it wasn’t any of the ordinary people that had actually came for the cause . They had professional people doing the real talking. I expressed my feeling to those two people. Let me be rude here and say I was pissed. I came to Washington DC to tell my story and the other’s that have been affected by this monster of cancer (all of you). She knew how up set I was and said that well it’s a time factor. Lie! Well we went in to our state Senator Rush’s office and we were introduced. Here goes the magic!!!! When he heard my name he said “Oh thank you for all the information you sent me. When we went into his office and we all set down, he went directly to me and said how is your son doing, tell me about it. He then mentioned all of the faces of the children that he had scene in the information I had sent him. (Thanks everyone, we did make a difference) It wasn’t threw the help of the American cancer society either! They intended that I would just be a face there. They didn’t want a sincere heart felt story. They just wanted to present the professionals and to have him sign the Cancer promise! I felt that the true hero’s of this story were not to be heard. The kids that the story was all about. I do believe in what the American Cancer Society is doing but I sure don’t believe in the way they go about things. I thank God for giving me the idea to send all of the information in advance and I thank all of you who followed threw and sent me everything.
I am very disappointed in the organization that I have supported for the past ten years. Our main contact at the cancer society is a lovely woman and we love her. Yet I know that this woman would have helped us any way with her connections. It was her heart that was helping us not her job.
After all of this happened I began to double myself and wonder if it was just me that had my feelings hurt. Then on the bus ride home I ended up speaking to another woman that was there in the beginning and then disappeared. It seams that the same thing happened to her. She thought she had come all that way for a reason. She had asked about being our team leader and she was told don’t worry about it its all taken care of …..We will talk about it later. Same story. They didn’t need us just our presence. Well surprising to them he already had the compassion of our journeys because I had already sent it to him and he was already willing to sign the cancer promise.
I am upset with the Cancer Society and feel as thought I have been used. It’s not just my thought but of at least one other.
I just want to say to all of you…. Thanks for your help and we did make a difference. In New Jersey…our federal state senator Rush Hold will be continuing to back the funding of cancer research. I my self am interesting in putting my time in to more specifically pediatric cancer research. I have a lot of ideas and a lot of people who have already said they would be part of it.
I hope no one is upset by my words and I want to add that I just needed to let my disappointment out.
My greatest honor the past few days was in my walk to capital hill in helping another Mom carry the banner she had made about her son that had lost his battle with cancer.
Norma
Erik is doing well in school. Yesterday I took him to pick up his hearing aides. The hearing test with the aides on shows that his hearing is normal. He is a bit concerned about wearing them but he does realize how much more he can hear with them. Now today Dad picks up the glasses. Erik is doing fantastic!!!
I will update when I get back Thursday.
Erik is feeling pretty good. He had a busy weekend and did need to rest some but that is to be expected. He is pushing us to buy him more G Unit clothes. He really likes that group and since he has grown well…… G Unit is a music group if you want to call it music.
Jason went for a physical last night for participating in sports this year. He has grown 4 inches and gained 20 pounds in the last year. He is as tall as I am now. The other day he called Jen “shortie”!!!!!
We go to pick up Erik’s new hearing aides next Monday. He has actually been asking for them. That’s a switch from last year. His appointment in Boston is October 5th. I can’t wait for that visit. I don’t think they will really know anything until they do the next MRI/MRA. He will tell us about that and it will be scheduled at CHOP in Philly.
Next Tuesday I leave for Washington DC for Celebration on the Hill. I am excited about this and I have a couple of friends coming with me. I know so far I have an appointment with Rush Hold at 4:30 on Wednesday.
Every thing else is going good but much to fast. The older I get the faster life seams to go.
I still haven’t gotten any more pictures from the ride4erik celebration.
Thank you every one who checks in on Erik. It is so appreciated the love and care that is shown to my family. Erik is a really great kid and to have people understand his differences in life means the world to me.
Norma
Please pray for:
Erik and his continued healing.
Carol as she goes threw treatment for lung cancer.
For me in Washington DC that I can do something to make a difference.
Also, in talking to a friend last week I find that her nephew has just been dx’ed with hodgson lymphoma and he is only 14. His name is Doug.
Also, for Nicky Hope. He is back at Sloan Kettering in NY.
Unfortunately it rained. They still had the motor cycle run. It rained but it didn’t spoil there fun. Erik loved it. The event was held inside at the Elks so it didn’t matter that it
(Along with all the other men in the room). They even took the time to play a few games of pool with Erik and his friend Kevin. There were so many people that were working the whole day to make this a success. We appreciate all of there hard work so much. Suzie and Joe you are the best! You gave my son one day that he was so honored by every one. For this we are so grateful.
I will keep looking for pictures and hopefully by the end of today I will have a few.
Erik continues to feel better and better. He will surely be ready for school next Wednesday. We meet with the teachers on Tuesday at 11 o’clock so he can meet his aide and get a little familiar with what will be his new environment. A fresh men in High School. It’s hard to believe.
Please continue to pray for Erik and my friend Carol Aaron. Also, I meet a new young lady on line yesterday and her name is Melody. She is 15 and her cancer has returned.
Norma
Today we are leaving for Baltimore. I have a meeting in Baltimore at 9AM tomorrow morning. This is another training session for going to Celebration on the Hill in Washington DC in September. Erik is going to take the kids to the aquarium while I am in the meeting. We will head home late tomorrow afternoon and rest up for Erik’s big day.
I will update on Monday about the ride and hopefully have some pictures to post.
Erik is feeling so much better. He has to take it easy and not get to physical but he totally understands this. I appreciate all of the prayers and concerns every one has had for us. The heavens were being thundered with the tons of prayers. This has truly made a difference in his recovery. This week has been the Hunterdon County Agricultural fair. It use to be in Flemington but now is in our own back yard. The kids walk across the field a couple of times a day to walk around and eat and see there friends. They are so ready for school to start.
I will update Monday with all the info! www.ride4erik.com
Thanks Again from the bottom of my heart for every ones continued prayers for my son.
Norma
I am so proud and grateful to all of my family. Jason and Kevin (Erik’s best friend) came to ICU on there own to see Erik. It was a scary atmosphere but they didn’t let that stand in the way to see how Erik was.
Erik is now very excited about his day coming up. His celebration is this Sunday. If any one is interested in checking this out you would sign on to www.ride4erik.com Suzie and so many others have put so much in to this day. It is actually a fund raiser for out family but also a celebration for Erik.
Erik will be starting High school in two weeks. He does have some restrictions but he will be just fine.
Thank you all so very much for your continued prayers and caring. It is overwhelming for me to see so many people that care about Erik.
Thanks you so much.
Norma
I don't know why but I wasn't able to sign on to this site at all today. Thankfully the problem has been cleared up.
Erik was so thrilled to see Pastor Ryan, Kevin and Charlie arrive this afternoon. He became more alert and there were many smiles. It means alot to him but every thing to his Dad and I.
Love
Norma
Please keep the prayers coming.
I have to say how proud of Jason and Kevin (Erik's best friend) Erik and I went to be with Erik. Some time went by and the nurse came in and said there were two visitors that wanted to see Erik.....was it alright. I went and there was those two wonderful boys. Jennifer said they insisted on coming over to see him.
Tomorrow our pastor, Ryan Balsan and Youth director Kevin Irelandand Jason's friend Charlie McCLelland are flying to to Boston to see Erik. I thank God for the family I have.
Pleae pray for Erik for the next 24 hours for no problems.
I love all of you guys. Your prayers and thoughs are what is truly getting me threw this.
Norma
Erik went in to surgery at 7:45. I can not tell you how proud I am of him. Such courage he has. Yesterday it took three different attempts from three different people to get an IV in and started. I watched him sleeping last night and I thank God so much for giving me this wonderful young man to love. The surgery should take about 5 hours. The team of doctors in the operating room are amazing. They will be doing a EEG during the whole time of surgery. The danger is of having a stroke during surgery.
Thank you to all for you abundance of prayers. I feel this and receive courage. I continue hear in my heart and soul threw last night and this moring the words... "I am with you" Such peace this gives me.
The day before we left for Boston we decided that we would bring ERik's best friend Kevin with us. The was the best decision his Mom and Erik and I made. He brought so mluch laughter for Erik in his time of waiting. I am so proud of Kevin and Jason. The stayed with Erik right up to wheeling him in to OR.
Jennifer has been at our side as well.
Please pray for Erik during this surgery. It means everything to me.
Norma
I will update later this afternoon when he is in ICU and we know more.
All seams pretty good and we are settling in. I wanted to thank every one for there kindness in the past few weeks. I think I have been walking around in a bit of a fog. Today is pull yourself back together and do what needs to be done. As an on-line friend said to me yesterday....It's just another bump in the road of the childhood cancer journey.
I will update tomorrow after erik has been admitted.
Erik's surgery is scheduled for 7:30 Monday morning
Norma
Last night we went to Steven and Alison’s for dinner and that helped. He always loves playing with his nephew Spencer.
The plan is to leave next Saturday morning around 9AM. Get to Boston early afternoon. Gen settled in our hotel room which is right next door to the hospital. We have made reservation at Best Western. It will be Erik and I, Jason and Jennifer. We will be taking turns staying over night with Erik in his room. I say taking turns but I know it will be hard to get his Dad away from his bed side. Threw every thing Dad has always been his pillar of strength.
We will get threw this as we always have. Erik is an extremely strong willed young man.
Please pray for Erik. That he has a successful surgery with out any complications. A speedy recovery with no effects of the surgery. Also, that the surgery is a success. It will take six months for the blood vessels go grow to the damaged ones and take over.
My Mom has had some new complications this week. My Mom was dx’ed almost 20 years ago with osteoporosis and about six months ago she was dx’ed with Alzheimer’s. Now they have discovered that she is having problems with her heart and the way it is beating. They have put her on a blood thinner and did an ultra sound of her heart. She will be having blood work every week to monitor the medication she is on. I am waiting for the doctor to call back with the results of the ultra sound. Please keep my Mom in your prayers as well. This is a tough time for her and my dad.
Especially since we will be gone for a week in Boston. She has great support around her. Our family is always there to help and also our church. I have requested some of the ladies at church to stop and visit the week we are gone. Some are going to bring a few meals. My Mom isn’t able to cook or get around anymore and it is all for my Dad to do. He’s 82 and not able to do the things he would like.
Thanks you so much for all f your prayers. We receive so much strength from others.
I have recently been so inspirited by the strength and courage of a dear friend and her family. My friend Carol has recently been dx’ed with lung cancer. The courage she is showing for others to view is amazing. Still always thinking of others. She has a remarkable family and her daughter is her best friend and a model of courage in her time of fear. Please pray for the Aaron family.
I will update again before we leave next week. During the time we are in Boston I will be updating daily with all that is going on with Erik and all of is positive progress.
Erik is looking forward to coming home for his celebration. A dear friend of our has been working day and night putting together a fund raiser for our family. We are so grateful for her care, and all of her efforts. This is so appreciated. If any one is interested in checking this out sign on to. Ride4erik.com It is a motor cycle run in the morning, and a huge celebration for Erik in the afternoon.
With love Norma
The summer has gone so quickly. Erik has been keep busy with having his friend Kevin over, playing basketball, swimming and video games. He still isn’t saying much about his up coming surgery but you can tell it is on his mine. Yesterday he was fitted for new hearing aides and next week he will be having his eyes examined for new glasses. He’s getting already to start high school in September. My concern is the surgery and how we will get Erik prepared for school with that. I am hoping he will be allowed to wear a hat in the beginning. The incision will be fairly large just behind his right ear. You can see pictures of this if you sign on to. www.moyamoya.com and click on to pictures. That will give you a better idea of the surgery and location. This is going to be hard for Erik and especially for school starting and all. In my mind I am thinking that let’s get threw the surgery and then worry about the next step. There are quiet a few pictures on the site. Some children have this from birth, Erik’s problem was caused from the radiation he received 12 years ago. He will be so thrilled to see a few visitors after the surgery. Erik’s youth director, Kevin and our pastor, Ryan Balsan are going to make the long trip up to Boston. We are so grateful for the care they are giving us.
Shortly after we return from Boston a very dear friend of ours is having a fund raiser for our family/celebration for Erik. For information on this please sign on too www.ride4erik.com
What I am trying to figure out now is how to put more pictures on Erik’s web site and how to include music to it. Always something new to work on. Speaking of projects to be worked on! I have been spending a lot of time working on fulfilling my requirements for going to Washington DC in September. “Celebration on the Hill” You can sign on to www.celebrationonthehill.com I am working at contacting different level of government and trying to make them listen to me about the importance of cancer research. I have been really bugging people in this way. Also I am looking for people to join ACS CAN. This is a sister organization to the American Cancer Society that is strictly for raising awareness for legislature. The cost is $5.00 to join and it’s just filling out a short form. If any one is interested please e-mail me and I will get back to you.
Jason has been keeping busy with working at Mill Direct Carpet in Flemington. His friend’s family owns this business and has given Jason an excellent opportunity to make some money. He likes it and we are thrilled about it. Right now he is helping out at Vacation Bible School in the evenings this week. He will be making the trip to Boston with us and he is looking forward to seeing Boston.
Please continue to pray for Erik and my family as we get closer to the date of his surgery. It’s hard but we will get Erik threw this. God has walked with us on Erik’s Journey all the way.
Please also pray for a very dear friend of mine that was just diagnosed with lung cancer last week. She started treatment right away. She has a very positive attitude and is a strong Christian. Her name is Carol. Her daughter Stacy has started a caring bridge site for her. I will post there site address later.
Love
Norma
Mono/Distorto
He still isn’t talking about it much. As time comes closer I am sure the questions will start to come again. He is holding all of his money he received from graduation gifts and thinking he is going to buy a flat screen TV. I think he will have to save a little longer. He can’t really watch a small screen as his eyes aren’t that good for viewing the smaller screen. The larger ones WOW! He has a TV in his room so I don’t understand wanting something new. Go figure….kids.
Jason just got home from Florida last night. We all missed him so much. Especially Erik. Jason had a wonderful time in Florida with the Gherardi’s and came home with a hair cut. That made my day. He seams to have grown in the week he was gone. Jason started basketball camp today.
My birthday was over the weekend and it was probably the best ever. I received so many nice e-mails and cards that it made me feel really cared for. What a wonderful feeling. We also had a 50th Birthday party for Marilyn (brother’s girlfriend) on Saturday. She loved it and seeing her happy made my day.
My Dad goes for his corporal tunnel surgery tomorrow. Sure praying that gives him some relief from the pain he has been in. My Mom is about the same. It’s so sad to see her memory get worse and worse.
I have been working on all of my paper work to go to Washington DC in September for Celebration on the Hill. Starting to get excited about that!
There is a lot of excitement going on as well that I am hearing little bits and pieces about.
Suzie Gherardi and friends and family are planning the fund raiser for my family. It feels strange to be on the receiving end of this. We are so grate ful for all they are doing. The past 13 years have been a long journey. We have Erik with us and that is all that really matters to us. My heart does break for the young man that …..nothing seams to come easy for that he has endured more in the first three years of his life and since then, then most ever will. He was robbed of the life he should have had. Some times he seams so lonely. Mom and Dad can cheer him up, I just thank God for his brother. That keeps him going. I am told that he won’t be able to play basketball for about six months after his surgery. Not that he plays on a team or anything. Just with his brother in the barn yard. But basketball is always on his mind. The shoes and shirts with all his favorite players on. Basketball is his love. A few days ago his friend from school, Angelina called him. He was thrilled! Angelina is at the shore for the summer. His best friend Kevin just got home from vacation and he is over spending a few days with Erik and Jason now.
Enough for now. I tend to babblae on. If you want to check out the progress on the fund raiser the web site is www.ride4erik.com
Please keep Erik and our whole family n your prayers as we approach Erik’s surgery on August 14th.
Please remember to leave a message in the guest book. I/we love to see who has visited.
Norma
I found this quote the other day. It really caused me to think and praise God even more.
Long term side effects are a luxury of being alive
Also, this song has given me a lot of piece lately.
I Will Praise You In This Storm
I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining
As the thunder rolls
I barely hear You whisper through the rain
"I'm with You"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You
As the thunder rolls
I barely hear You whisper through the rain
"I'm with You"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
Though my heart is torn
I will praise You in this storm
After graduation Erik was invited over to a friend’s house to go swimming. The whole family went and we had a wonderful time. Erik was so happy with everything going on around him. Such accomplishments!
Erik’s party was on Friday night. So many people showed up to celebrate with us. You can check out a few pictures in the photos that were taken. We have had so much rain lately but not on Friday night. It didn’t rain until around 11 or 12 at night.
This weekend Erik’s (Dad) brother and his family came down from Maine. They got there just in time for Erik’s party and also we had a family wedding on Saturday. We all had a good time. Today it is back to work. I guess it is time to rest now. There has been so much activity going on around us. We haven’t had time to think about Erik’s surgery coming up. It is only about six weeks away. There are so many people that are praying for him and the success of this surgery. There is such power and strength that comes prayer.
Erik is feeling well and enjoying the beginning of the summer with having friends over.
He worked on his pond in the back yard and has taken his turtles from his fish tank out in to the pond. He loves animals of all kinds.
Please continue to pray for our family in the coming weeks.
If you are checking in please sign the guest book. We love to look at it to see who has visited.
There is one more important thing I would like to share with you. Some really dear friends of ours are putting together a fund raiser for our family. This will be August 27th. If you are interested in checking this out please go to www.ride4erik.com
We truly appreciate all they are doing for us.
Love
Norma
Erik is also excited that his cousins from Maine are coming down on the 23rd. My nephew, John Kanach is getting married on Saturday.
So the family is coming down to stay with us for a long weekend. I did get a very special call last week. John called and asked if I would do one of the Bible Readings at the ceremony. I was thrilled and honored that he would ask me. It truly made my day.
I would like to ask for prayers for a friend of mine and her family. There child, Jacob passed away last night. He was only six years old and a wonderful child. Please pray for strength for this wonderful family. If you would like to visit there web site and leave a short message that would be very much appreciated.
Love
Norma
Erik turns 15 today. I surely don’t know where the years have gone. Even with Erik’s medical problems the time has flown.
I realize how close we came to loosing him 13 years ago and I just give thanks to God for allowing us to keep him.
This is an exciting time now for the Zimmerman Family.
Tomorrow night Erik goes with the 8th grade on a Dinner, Dance Cruise. They go out of Philadelphia. He is so excited. Last night I took him shopping for news clothes to wear. Well…..he decided right away he wanted a suit. I was shocked. He really wants to look nice. If this makes him feel good then I’m all for it. We left Burlington Coat factory with new suit, shirt, tie and shoes. He will be able to wear this for graduation on the 20th as well.
Today, Erik’s class is going to Hunterdon Central High School. It’s just for a half day but will really give him a feel for the setting for next year. He is really excited with all of the things going on and I feel excited for him.
Tonight we will be celebrating with dinner out. Erik will get to choose. We will probably have a family dinner on the weekend as his Grand father will be turning 82.
I have been thinking a lot about Erik’s up coming surgery. August seams so far away. I know the time will go so quickly.
I will end for now with again asking for prayers for Erik and the upcoming surgery. I can’t tell you how wonderful it is to see him so excited right now about all of the activity going on in his life.
Love
Norma
Even though we were waiting for this information it is still a little overwhelming. It is good news that his surgery is scheduled yet some times good news isn’t easy to handle. This is the best thing for Erik’s future but it is so very hard to see him going threw yet another surgery. He is a tough kids and I know that he will recover quickly and be just fine.
We will now be making plans for his graduation and the party we will be having for him.
I will update again later. I am just at this point at a little loss for words.
Norma-Very proud Mom to Erik
We ended up getting to Dr. Scott’s office about an hour early. That was great as he took up early as well. What he says is that Erik definitely needs the surgery. He is very booked and has a few seminars so he will be booking the surgery for six to eight weeks. He showed us the films from Erik’s MRA and angiogram. There are hardly any blood vessels that are working properly on the right side of the brain. When this is scheduled and we go he will be spending a week in the hospital. First day is hydration, second day is surgery and he will be kept in ICP for 24 hours. This followed with five days in the hospital. We will try to find a hotel walking distance from the hospital. Jennifer (daughter) wants to go with us. If it was just Erik and I we would stay in Erik’s room with him and Erik Sr. would probably sleep in the van at night. Not the best arrangement so I am glad Jennifer is going to make the trip with us. Jennifer was/is a very important person in Erik’s life. When Erik was first DX’ed Jennifer was only 16 and took care of his needs very often. I was ready to give birth to Jason and couldn’t handle his chemo diapers and all. Jennifer is a wonderful daughter and really a second Mom to Erik.
Dr. Scott told us that this is a very serious surgery and although it is rare, there is a danger of Erik actually having a stroke during surgery. My faith is in God and I feel sure this will not happen. He also said that he couldn’t guarantee this surgery as making every thing perfect. He has done this surgery for years for children that have MoyaMoya syndrome. It works perfectly for them. Erik has MoyaMoya syndrome but it is radiation induced and not a damage that is something a child is born with. I hope I am making sense. Erik’s problem wasn’t something that was caused by an accident of nature. It was caused by radiation. Radiation….the “thing” that saved my sons life. The “thing” that is causing his problems now years later. In my heart I know that all will be well. Jesus has walked with us on this path for the past 13 years. Erik has done well with everything he has had to endure. He will be fine thru all of this. I believe this. Please keep Erik in your prayers. He is truly such a terrific kids. He knows all that is happening and is handling this with such strength and dignity.
We will find out the date for surgery a week from Monday.
Thanks you for checking in on Erik. It is only by the grace of God and the support of out all of our friends and family that we go forward all of this with such a positive attitude. We have to!
Love to all
Norma
Proud Mom to Erik Zimmerman Jr.
The week started out with Dr. Scott contacting us agreeing that Erik should have the surgery. We set up an appointment for June 28th as that was the earliest that he had.
Then yesterday his secretary contacted us again and said he had an opening for May 19th at 10AM. Of course we took it. I am glad we are going sooner to get this on the go.
We sat down with Erik last night and explained every thing to him. All of it. He took it like the champ he is and has always been. He did come back a couple of times threw the evening to ask questions. He is O.K. with it. I did go on to explain to him how blessed he was. How the radiation he received when he was three saved his life. Also, that the same radiation is what is causing this problem. He is truly such a great kid. Just takes what ever life hands him. We will be leaving for Boston next Thursday afternoon and spend the night there. We really wouldn’t want to be late for this appointment.
When we get home on Friday the Relay For Life will probably have already started. I have to go and take care of the banner, “Wall of Hope”. The banner will go to Washington DC with me in September. It is meant for every one who attends the Relay to sign. I do hope we make it back for opening ceremony. Erik was given a Relay shirt from a friend of mine whose son passed away in February. It has great meaning. It won’t take us long to get to the Relay as it is practically in our back yard this year. They have changed locations to the County Fair Ground.
I hope every one has a wonderful Mothers Day.
Check out the back screen. I added a few pictures from the past. I am not real sure of what I am doing so they are huge. I have to work on it.
Sign the guest book if you have time. Erik Jr. and I love seeing who has been visiting.
Love to All
Norma
Mrs. Zimmerman:
I am sorry, but I was waiting for the transcription to come through the system. I did think that Erik had moyamoya syndrome, with greater involvement on the right side — although there were some areas in the left parietal region that also appeared to have reduced blood flow. I would be happy to see Erik to talk over treatment options with you and your family. I do think that surgery is a strong consideration here.
You could call the office to set up an appointment if you would like, and we will make every effort to see him promptly.
Dr. Scott
Our appointment is June 28th at 9:15. The secretary is checking with the doctor to see if he feels it is more urgent that he be scene sooner. So for now it is June 28th.
There is so much relief in finally hearing something. Now the time has come to tell Erik about what is happening and that he may be having surgery. This will be a little difficult. He is an extremely tough kid. He will be fine. My heart does break for the journey he continues on. To him this is normal life things. That is sad!
We had a wonderful time at Disney last Tuesday. Just the two of us. We made a lot of wonderful memories.
It is hard to believe that Erik will be graduating in June. Going to Hunterdon Central next year. My precious baby has been growing up right before me. I thank God every day for allowing this child to stay with us to love and take care of.
Please continue to pray for Erik and the rest of us as well.
Norma
All of Erik’s latest testing is now on Dr. Scott’s desk at Boston.
We are anxiously waiting to hear from him. Of course he will probably contact us through e-mail tomorrow when I won’t be able to get his response until Wednesday.
It was a very busy weekend. They always go so quickly. We had out first cook out on Sunday evening. The whole family was there and how wonderful it was to see Spencer. It’s so cute as he always waits for Grand pop. Erik loves this as well.
Will update more on Wednesday after our very special trip.
Norma
After the latest testing is sent to Boston then we will be going for a consultation with Dr. Scott and go from there.
Please continue to keep Erik in your prayers.
Next Tuesday we fly to Disney for the day. We are both excited about this.
Norma
Dr. Sutton went into great detail explaining the problem that Erik is having. The damage that the radiation he had 12 years ago caused. It is also more of a problem as he had radiation at such a young age. He also has told us that he has never done this surgery. He has done the same type for different disorders but not for radiation induced. Also, after the surgery it takes a year for the next blood vessels to grow and (hopefully) function. There is no grantee for this to work as it is so new. So we are back to waiting for the results of the angiogram. After we have them then we will be sending the Last MRI/MRA and the angiogram results to Dr. Michael Scott at Boston Children’s. He has done this surgery and has done a lot of research on this.
Erik and I do feel some what better about things as Dr. Sutton did explain what was done preparing for surgery and during surgery.
Although it is still serious it is not as big of an incision as we were lead to believe.
So at this point we are praying that he is a candidate for surgery and that he will have no problem with having a stroke before this is all resolved.
Please pray with us for good health for Erik and that things can be taken care of as soon as it is humanly possible. We can’t see this happening much before the summer vacation as it is already the end of April.
On a happier note! Erik Jr. and I are going to Disney World on May 2nd. It’s The Sunshine Foundation’s Dream Life. They fly you to Disney for the day. We are both excited.
Norma
We go to CHOP on Wednesday at 3:15 to meet with the nuro-surgeon for results. I am so glad today is over with. I know that I have to put the results in God’s hands. Thank you all for reading about Erik and praying for our special little guys.
Love to you all.
Will update tomorrow about Erik’s progress.
Norma
A lot that the test is being done on Good Friday. I am drawling so strongly on my faith in God right now. I am worried so much about the angiogram. They have to tell you about all of the dangers. I know that these things won’t happen but as a Mom I am worried. After the test it is in Gods hands. Not knowing what to pray for except for God’s will to be done. I hope he is a candidate for the surgery but yet I am afraid.
Next week the kids are off from school. I am taking the week off as well. We want to do some fun things with Erik prior to the test on Friday. We are thinking of staying over night in Philadelphia on Friday night as a treat for Erik. That’s if he is allowed to leave and not stay over night in the hospital.
With everything in me I believe in the power of prayer. Please keep Erik in your prayers for the testing he will receive on Good Friday and the test results that follow. I have lately been thinking so much about what these kids go threw. The diagnosis of cancer, the treatment and the years that follow. It is heart breaking.
I will update as we go. Thank you all that read this I don’t know how we world make it with out your continued prayers.
Norma, mother to a very special young man.
In speaking with Dr. Sutton, and he agrees that it is reasonable to proceed with the evaluation for possible bypass surgery.
What that means is that we would do an angiogram here at CHOP, and then after that study you should have an appointment with Dr. Sutton to discuss what it looks like and whether he is even a candidate for surgery. It is not possible to say right now whether he could even undergo the operation - that is what the angiogram would help to address. If this is something you want to go forward with, let me know and I will fill out the request for angiogram and get the scheduling arranged. The angiogram would be done as an out-patient, and he would recover in the angiography area and go home the same day provided that he had no problems with the procedure.
The surgery is called a pial synangiosis
Will update again when decisions are made.
Please pray for my son.
Norma
I will update again after I find out on Thursday.
Please keep Erik in your prayers!
Norma
Last week I took Erik for a hearing check and a check on his hearing aides. Good news that his hearing is unchanged. We just need to start looking for new hearing aides. It seams that Erik will be having every thing brand new to start High School in September. He went to the dentist earlier this month and he needs braces on his teeth as well. He is so very fortunate when it comes to dental work. When a child receives radiation in the head area, a lot of times the second teeth will come in decayed. All of his second teeth are find….except….he is missing a few. So, he will need braces in the near future.
We will also be taking Erik for his yearly eye check up. I know he will need new glasses. Erik will be having a very exciting summer with all of these new things.
Please pray for a friend of mine. Her name is Susan Mclellan. Her son Myles passed away three weeks ago. They life in Canada. I have known her on line for a few years now. Myles had the same type of cancer that Erik had. He was about three years out of treatment. In December he had an MRI and everything was clear. In early February he started having problems. With in a month’s time it took his life. Susan and her Husband Wayne are totally broken hearted. I only wish I could find the words to give her some comfort.
My Dad is very much back to normal. My Mom seams to get worse each day. I feel so bad for her. She gets so confused and forgets so much. Her osteoporosis has gotten so much worse. She can barely walk and the fear of falling is so overwhelming to her. This is so much for my Dad to handle. When the weather gets warmer and he is able to get out more I am going to be checking in to a visiting nurse (or what ever you would call that type of person) to come in the morning And help out. Help her get washed and dressed and take her pills. I know my Dad can’t wait to get out and start digging in the dirt. The farmer in him will always be there.
There is one more thing. I guess it is good new. I have been asked to attend a function in Washington DC in September. It’s called “Celebration on the Hill” I go to my first training meeting on Saturday. It is for a weekend and we actually go before congress and tell our story and promote more of our tax dollars to be approved for going to cancer research. I am kind of excited about this and only pray I can help to promote research. There have been so many children that I know (online) that have passed away lately. People that I love have suffered at the hands of this horrible beast called cancer.
Please keep my family in your thought and prayers. Please pray for a successful meeting with the neurologist.
Norma
On March 27th Erik goes to see the Neurologist at Children’s in Philadelphia. Erik and I will both take him. It is always better to have two sets of ears listing when it is something new.
Erik was having some problems with his hearing this past week. Either it is the hearing aides or the hearing. It’s hard for him to decide. He will be going for a hearing test on Monday afternoon. He hardly ever really gets a break between doctors and visits. He really takes it all so well. To him it is just something he has to do.
Hope all reading this will have a great weekend!
Please keep my family in your thoughts and prayers for Erik’s upcoming doctor visits.
Norma
Erik’s oncologist finally called last night with the results of Erik’s MRI/MRA. The MRI came back with no change which means all is well. Erik has had a few spots in his spine since day one and they have never changed. So that is good news. Now to the not so good news. The results of the MRA are that there is a lot of change in the last year. An MRA is a magnetic resource angiogram.
A few years ago Erik had some problems that were the result of a mini-stroke. After a lot of testing they found that as a result of the radiation he received when he was three was now having some late effects with the blood vessels in the right side of his brain. They had said it was shrinkage of the blood vessels. Erik had received MRI/MRA every six months for a few years and then went to every year. It had never changed until the one on February 10th.
What this means is-the problem he has could lead to a stroke. Dr. Fisher is concerned and is referring Erik to a neurologist that specializes in strokes. This is all at Children’s Hospital of Philadelphia. Dr. Fisher said that he has never scene this problem get worse in all of his patients. BUT…it goes back to the same thing that kids don’t survive when they are dx’ed as infants. Erik was only three years old when he received radiation to the brain and spine. He is our miracle child for surviving this.
I am so very worried about this but I also know I can’t loose sight of God’s gift that Erik is still here. The treatment that he received that saved his life is what is causing all of the problems he has today. I praise God for his healing and know that we can find answers to all the problems along the way. To me what is heart breaking is that he has to go threw this. We are not telling him anything until after we see the neurologist. This should be in a few weeks.
We are now currently looking to find a way to get Erik counseling.
He really needs it. He has a lot of anger bottled up. We are working on the money issue right now. What ever he needs he will have.
Please pray for guidance threw this and that Erik does not see any harm!
The little boy that I had asked for prayers for two weeks ago…Myles. He passed away last week. His Mom and Dad are having a rough time and truly need prayers for finding peace and strength threw this.
My niece, Amanda is home now. After four months in the hospital she is finally home with her daughter and husband. She is still weak but improving.
Erik new friend (the girl) has made him so happy! He actually went on two dates last week. They went to the movies. My baby (right) Jason also went. Where have the years gone? Erik’s friend Angelina has been so good for him. He has explained that they are just friends but he is so thrilled.
Will update when I have more information.
Erik goes next Wednesday for pulmonary function testing.
Erik also saw the endocrinologist this past week. This doctor monitors all of the growth hormone. He is cutting back on his daily needle as he is nearing the end of puberty. He is now 5’3” and ¼ inch in height and weighs 108 pounds.
This is the day that the stress level goes up. Erik will get his MRI/MRA at 12 noon today. He will be receiving anesthesia for this as it is a three hour study. The last few times he moved when they were trying to get the spine done. We should hear the results some time next week. (Maybe Tuesday or Wednesday) Here is where my insanity starts. What my mind goes to is a friend of mine that lost her daughter. I only actually met this friend once but for me it was a deep bond! Her daughter was dx’ed years ago like Erik. Ten years out of treatment she relapsed in her spine. By the time they discovered it she didn’t have much time left. Erik has no symptoms so there is really no need for worry. It’s just that at this weak point your mind will wonder. My heart just pains so for all of the families that are traveling this journey. Erik is really doing well so I am sure all is find. This is just so much for him to go threw. Always something and he is so good about it. Any thing medical he gives no problem for the things he has to do. Praise God!
We did well last Monday when we met with the Child Study Team and the team from Hunterdon Central High School. They are giving us the things we feel we need for him to be successful in high school. It seamed to easy so I better be on the alert for things going by me with the paper work.
My mom and dad are doing well. My Dad is so much better. The doctors have now told him he can drive and we are really praying about this. He is a very wise man and if it does come to a point that he shouldn’t I know he is smart/brave enough to just say so. He just doesn’t like to bother us all the time for rides and all. Try to convince him that it is no bother. Besides what he doesn’t realize is that I am going with them to the doctors no matter what. My mom does get things mixed up and needs to be helped ….even if she doesn’t think so.
Amanda (my niece) is doing better. They are talking about her coming home. I can’t wait. I have only scene her once since October and I just want to help her in some way. What they really need is for the three of them to be together along for a while, just Jim, Amanda and Brielle. There is a dinner dance tomorrow night that a few people in Lambertville are putting on to raise money for them. I think all will be present no matter how much snow we get.
Sunday is Spencer’s Birthday Party at my house. The little guy will be 2 this week. He is such a sweetheart.
I will update when I receive the test results back. Please keep us in your prayers for continued good health and a healing spirit.
Norma
Please also continue to pray for Myles McLellan.
He has had a relapse and they are starting immediate treatment. He just celebrated his 13th birthday yesterday.
Jason has been on our worrying list for the past week. Last Friday at basketball practice he hit head on with another child. Long story short he had to go to the hospital to get, what we thought would be stitches. They have new glue for the skin that leaves less scaring. The cut was right over his eye below the eye brawl. He is doing well and enjoyed the special attention for the few days.
Next Friday Erik goes for his yearly MRI/MRA. He will have anesthesia for this as it is a three hour study. It’s for the brain and spine. They want a good reading on his spine as he hasn’t had one in several years. The last time they tried he moved slightly and they couldn’t get a good read on it. Erik has spots in his spine left after all the treatment. They feel that is was dead tumor or scar tissue. They just want to make sure there is no change. Children can some times reoccur in the spine years later. It doesn’t matter how many years you are out of treatment the old feeling come back and the stress starts to take over. So next Friday is the big day.
There have been some changes for Erik on an emotional level. He has always had problems with making friends. WELL! A girl started to be nice to him. I was concerned about this. As it is turning out it has changed his attitude and vocabulary some what. She is telling him they are just friends (perfect) and all of her friends are being nice to him as well. Some of the other boys were not always nice to a few of that group of girls. Who can figure out kids? So far it is nice for him. They talk on the phone and he wants to know if she can over. Don’t know about that. He’s happy so we are happy. We just really have to keep an eye on it. When we met at the school last Monday we were talking about counseling. Erik is a lot of the times angry. He is at an age where he can’t keep up with a lot of what the other boys do. Plus all of his differences. The hearing aides etc. We are trying to work out a way to get him some counseling. It’s just so expensive. But he needs it and he will have it.
One last thing. There is a young boy in the group that I belong to. I belong to a group of people form all over the world that has children with the same type of cancer that Erik had. They are all in different paths of there journey. They young mans name is Myles. He was DX’ed four years ago on Feb 9th with was his 9th birthday. In the past few weeks he has been having a lot of problems and it seams he may have a re-occurrence of his cancer. Myles is asking for cards from all over the world for his birthday. If you want to check out his web-site it is.
WWW.thestatus.com go in to visit a patient.
The sign on is mclellan and pass word is healed12.
Or his address is:
Myles McLellan
62 Lancefield
Chatham Ontario N7L 2M3 Canada
Thanks for every one for visiting Erik’s page and please sign his guest book.
Will update after MRI/MRA on Friday
Love to all!
Norma
We usually get a call on tests when there is something to follow up with or the doctors/nurse practitioner will talk to us about it at our next appointment. I guess they forgot to mention. I was more then a little up set with them. Children’s hospital in Philadelphia is a wonderful place and would not want Erik any where else but, really didn’t know what to think of it except be upset. He goes for this test on March 1st. You can bet I will be bugging them after every test from now on. I know they have a lot of patience but!!!
Erik also had an appointment that is a pre-visit prior to his MRI/MRA on February 10th. The nurse practitioner that was doing the work up was in tears. She remembers Erik from when he first started coming to CHOP almost 13 years ago. The tears were for seeing him 13 years later healthy and doing well. It sure made me stop and count my blessings.
Erik is going threw testing now for his IEP in preparation for High School. Please keep me in your thoughts and prayers for this. I am so afraid I am going to over look something along the way. There are three points that we have to keep in mind for him. Educational, physical (health conditions) and emotional. He is different then the rest of the children.
My niece, Amanda was taken back to the hospital on Wednesday night. She had gotten out last Friday afternoon to stay at the Marriott with her family in the city. Wednesday she started having horrible pains in her stomach. They are testing for gall bladder problems. She also had pneumonia. We are all so worried about her. Her cord blood transplant was a success and the treatment she received is what is so hard on her body right now.
My Dad is feeling so much better in the past few weeks. The pace maker did the trick for him. My Mom has started a medication for her demensia. To me I don’t think it is helping at all. Time will tell. I truly know that the Lord walks with me daily as he is giving me the strength to cope with every thing that is going on.
Praying for Erik’s MRI/MRA to be fine on the 10th of February. If all is well then he will go back to every year again.
Norma
Erik was due to go for an MRI/MRA last Monday (1-9) but they cancelled it until February 10th. He will need to have anesthesia for this as it is a three hour study. They need to get the spine done and with out anesthesia it’s real hard for him to lay still for that long. Next Thursday go goes for an Echo and to see the Doctor in the Long term follow up clinic. The Echo is a standard test that all kids have that has had radiation that close to the heart. So, next Thursday will be a busy day for Mr. Zimmerman Jr. Of course he always gets to go out to lunch on the way home so he is happy.
My Dad went to the cardiologist yesterday and all seams to be going well with the pace maker. He needs to see the lady in two weeks again that is in charge of the maintaining them. He is getting back to his old self again which is great to see.
I went to visit Amanda in NY last Sunday with David and Marilyn. It was wonderful to see her. They are talking about releasing her from the hospital but not to home. Jim has had to find an apartment in NY for a month or two as they want her nearer to the hospital. What he had to do is arrange an extended stay at the Marriott that is close to Sloan Kettering. This will be good for them as they can be together with Brielle there daughter.
I will close for now and as always asking for prayers for my family. My Dad is doing better but my Mom has started on Medication for demensia (sp) Prayers for Amanda and family and my family as well. There is one more prayer request. A young man that will be turning 13 next week. He had medulloblastoma as Erik did. He is a few years out of treatment. In the past week he has been having symptoms that the cancer may be returning. His Mom and Dad are as worried as can be expected. He will be having an MRI next week. They have asked to please send out prayer request out to every one. The family lives in Canada.
With Love
Norma
Erik went to the Orthopedic doctor on Friday. We had pretty much adjusted that he has scoliosis as we had been told to expect this as he grew from the radiation he had received. Prayers work and can help us to count our blessings. After the spine and c-spine ex-ray it actually showed that his spine of better then it was the last time he had the ex-rays a year ago. Praise God that this is one less thing he will have to deal with. He goes back in a year for one more round of ex-rays and then that will be it. He said that his growth will be done at that point and we will not have to worry about that anymore.
Erik will be having his testing in January. He is scheduled for an MRI/MRA of brain and spine. This is very long and will be under amnesia for this. They feel that sleeping threw is better as they want an accurate of the spine.
It’s so hard for him to lie still for almost 3 hours. This will be done on January 9th at 9AM.
Prayers are so appreciated for Erik Jr. and this testing. It doesn’t matter how many years go by the worry is still there.
My niece Amanda is still in the hospital in NY. She has been at Sloan Kettering Cancer Institute for almost two months. Her cord blood transplant was a success but the recovery is a difficult road. We are hoping and praying that she will be home for Christmas to celebrate with Brielle her three year old daughter.
My Mom and Dad area bother having health issues. There is so much going on and the days seam to fly by with out getting every thing done. Erik and I both have off the week between Christmas and New Years. Great time together and to catch up on things.
If I don’t post again before the Holiday please have a wonderful Christmas and may all of your dreams and prayers become reality!
Love to you all. If you have time please try to post some well wishes so I can show to Erik JR.
Love and Peace
Norma
Amanda is doing a little better. We heard that she was out of bed and going for short walks. She is truly starting on the road to recovery. Maybe in a few weeks she will be up for visitors and Jennifer and I will go in to the city to see her.
I am still working on the Bone Marrow Donor Drive that will be December 12th. I wish I could make people understand how important this is. You shouldn’t have to wait to need these services to be used to be tested.
This weekend is my parent’s 57th wedding anniversary. My Dad was in the hospital last week due to a fall. He had passed out and hit his head. He was told that he couldn’t drive any more and he took it really well. He is a very strong man…some one I very much admire.
The plan is still for my family to go to Maine to my Brother-in-laws for thanksgiving. The kids are excited and so are we.
Hoping every one will have a wonderful holiday.
This weekend is paint ball gun day with there friends. Every time we have planned it, it rains. Looks good for tomorrow.
I did want to let people know that my family is planning a Bone Marrow Donor drive. My niece, Amanda is in Sloan Kettering Cancer Center now. They couldn’t find a match for the bone marrow so they went ahead with a double cord transplant. I pray that this is the cure for her leukemia. She is only 29 years old. With all of the research we are moving towards a cure for cancer. Not finding a match for Amanda just proves that people still need people. We are all children of God. I am trying to spread the word on this. It will be December 12th. If any one is reading this that is interested please contact me and I will be so happy to give you the information.
My family has decided to go to Maine for the Thanksgiving Holiday this year. Erik’s brother and family live in Gray Maine. The kids are excited about seeing there cousins. We are looking forward to this short vacation.
Please keep my family in your prayers and my niece Amanda.
She needs prayers for strength, courage and healing.
Norma
This afternoon Erik starts his Karate/Counseling sessions. He is so dead set against going. That is the problem he is having. He doesn’t want to do ANYTHING any more. He is the happiest when he is at home and surrounded by the same family and friends he is use to. He doesn’t “like” any one or anything new. This is so frustrating, he just expects failure and rejection and that keeps him from doing new things. I promised him a turtle for at least trying this. I am praying so hard that he at least will give this a try. If I could only get in his head and make him understand what he is doing.
Last Sunday he was feeding his animals and when opening a can he ended up cutting his finger real bad. So after spending a few hours in the hospital emergency room he has four stitches.
Please keep me and my family in your prayers. I am trying so hard to balance things. It seams that a lot lately that every one has some where to go and things to do but Erik JR. This is partly because of the problem of not wanting to branch out to new things. I can’t stand leaving him behind and lonely. Please pray that the Karate/Counseling will be a success this afternoon for him. He has started going to youth group at church again. We are thrilled about that.
With love and gratitude to all that read this and share my problems.
Norma
The kids went to the Science Camp at East Amwell school. Erik made it to the third day and we had to go pick him up. He was quiet upset when I got there. He had what he calls that funny feeling in his head. He did the right thing. He told Mr. Cappelle to call us and he sat down and drank lots of water. What this feeling is…..He is over heated and his body is pumping blood to fast. He has the problem with shrinkage of the blood vessels on the right side of his brain. The first time this happened he had a mini stroke. After testing he is now on a baby aspirin a day. If this should get worse (being shown threw testing) or it happens to frequently they will need to put him on a blood thinner. This is something we would truly like to avoid. The reason for this is a result of the radiation. There is always something for my son to have to watch or worry about. This is his life of concerns. As his parents we are blessed to have him with all of these concerns. For him it is sad when he longs to be like every one else.
The results from the physiological evaluation with the psychiatrist came back. He is not what they call clinically depressed where he needs medication. He does see signs of depression. He would like for him to receive some counseling. We are working on this. It is hard to get him what he needs as he doesn’t want to do anything. He doesn’t want to make any new friends. He puts up that shield and won’t even try. This is his shield so he will not get hurt. It’s very hard but we will see to it that he gets it. He is to start Karate/Counseling on the 21st of this month. He says he is NOT going. It is something that will help him if he will let it. It has been paid for by a very generous friend that we haven’t met.
Erik has scene Dr. Moshang and his height and weight are excellent. He has done wonderful with the growth hormones. He will see Dr. Dorman about his spine on November 11th. I am so concerned about that and the idea of his now having scoliosis.
Next Monday we go to see Dr. Potsic and have more hearing test done. We do not feel that his hearing is any better but then he hasn’t worn his hearing aides at all this summer.
Erik Jr. has been working very hard at our vegetable stand this summer. He enjoys it and really likes being paid. It is good for him dealing with people and having to make change. He is doing very well. He went yesterday and spent his money that he saved on a paint ball gun.
My niece Amanda is in remission with her leukemia and is receiving monthly maintaince of chemotherapy until she receives her bone marrow transplant. No date has been set for that. We had a hoagie fund raiser last weekend and were very successful with that. We sold around 400 hoagies.
All is going well in the Zimmerman household and we are looking forward to the holidays this year. Please continue to keep my family in your prayers. I can not tell you how much strength and support we receive from our Lord Jesus Christ.
Norma
The summer sure is going fast. We will be coming camping this weekend in Lancaster PA. The kids are excited and we always love that area to just ride around and enjoy that beautiful area. The shopping is great as well.
Next week Erik and Jason will be going to a science camp at East Amwell School. This is there first year doing this but I know they will love it. Then, it is back to school. Erik Sr. and I are ready for that but do dread the home work starting up again.
Next week Erik goes to see Dr. Moshang, his endocrinologist. He is such a great doctor and Erik really likes him.
Please continue to keep my son in your prayers. Also, my cousins Colleen and Brian. They were away on vacation and there home was badly caught on fire. They only live about a half a mile away from me and they are very special to me. It is very hard to watch the people you love in trouble and hurt.
Norma
Oh well, there goes a half a day gone. We have learned to deal with all of this. There was no card.
Erik does have an appointment tomorrow with the Long term Follow Up. This is where we get a lot of the information about latest research findings for him. It is always interesting. Erik’s hearing is not so good. We find our selves yelling all the time for him to hear us. It gets a little frustrating, especially for him.
Dad is planning a day or two away with Erik. Jason has had such a busy summer and Erik is kind of left setting at home. He has friends over but it’s not the same. He loves animals especially turtles and fish. He wants to go to the Aquarium in Camden. Not sure if Jason and I will be going. I had wanted to go to the shore but the heat and the sun just isn’t fun or Erik.
Our garden is doing great and we have been selling out veggies! We usually have a road side stand but with our road under some recent construction it’s not really worth it.
I will update after his appointment tomorrow with hopefully some new information that is good for Erik’s future.
Tonight our church is having a blood/bone marrow donor drive. This was started for a blood replacement drive for my niece Amanda. Amanda is doing well. She is now in remission and will continue on maintenance until she received her bone marrow transplant. If any one is in the area of Ringoes NJ please feel free to stop by and participate in this very worth event. My phone number is 609-397-8892 and the church number is 908-782-1177. The hours are from 2PM-9PM today.
Please continue to keep our family in your prayers.
Norma
Erik also had his appointment with the psychiatrist. It went well and we should receive the written report before to long. We surly need help in dealing with Erik handling the constant differences in him and other children. He is really starting to ask about all the doctor appointment all the time.
We went camping last weekend at Knobbles. It is an old fashion amusement park. It was real nice and very relaxing. It is sad that once again Erik Jr. is left out. He can’t go on any of the really fast upside down rides. He says he doesn’t want to go any way but it is still one more thing that he feels the difference between himself and others. He is growing up so much. Steven and Alison came along with Spencer. He just adores his nephew and just stays with him watching after him. He has such a love for young children.
Today Erik is in Philadelphia again. He has his six month check up with Dr. Moshang. That is his endocrinologist that handles the growth hormone he takes daily. Can’t wait until they get home so I can hear about how much he has grown and his weight in the last six months.
Please continue to keep my family in your prayers.
Norma
Erik Jr. is doing well except he is really showing the wear of the heat. He just can't take the high heat and humedity. He spent most of the day in side in the air conditioning. He went with me to see his Great Grand Mother. She will be 98 tomorrow.
Erik Jr. goes to Philadelphia tomorrow to have two moles removed. Prayers that they are removed and all is well with that.
Tuesday Erik Sr. is taking Jennifer and I to NY to Sloan Kettering to be tested for bone marrow for my Niece Amanda. Prayer that one of us will be a perfect match.
Alot happening this week.
Please continue to pray for my family.
Norma
The down side was that on Friday evening Erik Jr. started with one of his attacks where his head feels funny and his speech is slurred.
The last time this happened was when we became a ware of the problems he has with the blood vessels in the right side of his brain. There is shrinkage of the blood vessels as a result of the radiation. When he gets over excited, over heated this can happen. When this happens he is to immediately lie down and drink lots of fluids. The first time this happened it resulted in a mini stroke. He is on a baby aspirin a day. If the problems should get worse he would need a blood thinner. He is tested every six months to monitor the blood vessels. This test is called an MRA.
He is feeling a lot better now and we didn’t need to take him in to Philadelphia.
Next Monday he goes to have two moles removed. This shouldn’t be too bad and should only take a few minutes.
Erik is looking forward to working at the garden stand this year. He made a lot of money last summer selling vegetables. Erik loves to make money and save for things.
I heard from my niece Amanda this morning. So glad to hear from her. She has been in the hospital in NY for two weeks not. Should be in another week. Waiting for her blood counts to return so she can come home. They are still looking for a donor for her bone marrow transplant. Hopefully she will be coming home soon so she can spend time with her daughter Brielle.
Please continue to keep Erik and Amanda in your daily prayers. I love them both dearly. Norma
This Saturday we are having the huge picnic for my daughter and Son-in-law. There wedding reception picnic. They were married in Nassau back in November. Now we have the celebration for all family and friends. Hoping the weather cooperates. We are doing a pig roast and all that goes with it. PRAY FOR SUN!
Erik will be going to the psychologist in July and getting some opinions and evaluations at that time. Just want to make every thing better for him.
My niece is still at Sloan Kettering in NY. She started to run a fever and they wouldn’t let her come home as her counts were so low. Please continue to pray for her!
Norma
We have really had so much hot weather and they have really enjoyed the pool. Great exercise for all.
We will be celebrating Father day with a picnic this weekend.
Jason has an All Stars game tonight, Saturday night and Sunday morning. We are being kept quiet busy.
My niece Amanda should be coming home from Sloan Kettering today from her first treatment. Her Mom and Dad and sister have been test for a bone marrow transplant. We pray for a perfect match.
Have a great weekend and enjoy Father's Day.
Norma
I went to Sami's lemonaide stand over the weekend. What a very special little girl. She was there pouring the lemonaide for her customers. It was my pleasure to bring her several donations from friends. All money raised goes to Alex's Leomonade Stand which all money goes to childhood cancer research. wonderful job Sami!
We also received some very sad news today as my niece Amanda has cancer again. She has Leukemia. Our heart break for what she needs to go threw again. This is a secondary cancer to the treatment she received last year. They found it very early and are starting treatment right away. We are going to be tested for a possible bone marrow donor next week. Loving and healing prayers for Amanda!
Norma
Tomorrow we will be going to Sami's lemonaide stand to support childhood cancer research. Sami's web site is listed below.
Norma
He received alot of gift cards for Best Buy. He is very happy about that.
It was a busy weekend with Baseball game. Jason had two games and his team(s) won both. It is still hard on Erik just watching but he takes it well. Not having a friend over is really on his mind. He seams so sad. We are praying that time is going to take care of that. We have really learned that you have to let life happen. I was always trying to run ahead making things better before anything happened. It is time for me to just stand back.
Norma
Erik is now having a few problems with friends. He has had one special friend for the past year or two. He would come and play with both Erik and Jason. He usually stayed the weekend, from Friday night to Sunday night. He is starting to drift away and Erik does feel the absence of his good friend. Praying that things will work out and I know things like this I can't fix. Time will fix things.
Just yesterday there was a problem in the lunch room. Erik was setting with his class of 7th grade boys and one of the kids stated calling him and a classmate of his (special ed) "RETARTS". I guess Erik is starting to mature and instead of going after him he just went back to class and started working on his project for science. He and his friend did mention this to there teacher. She did report it and the boy was talked to. A year ago Erik would have rolled up his fists and started to swing. That then would make them both guilty. How times have changed in the schools since I went. It did effect Erik though, as he came home from school very quiet and just went to his room. The things that happen like this with other kids just break my heart. I don't understand why things can't be easier for him in social issues.
Oh Well, time to go to Jason's baseball game.
Please continue to pray for my family. For Erik and all the prayers of the heart.
Norma
There has to be other children that are long term survivors of medulloblastoma that were dx'ed as infants.
Erik has been fortunate to have the same teacher for the past six years. Mrs. Meeter has tought him so much. One of our questions is that after he went off of the steroids in March, the first time, his ability to learn has just blasted forward. We were all very pleaseed with the progress he was making prior to all of this. Alot more so then we had been lead to believe from doctors. Now in the area of reading he is moving very swiftly. We are told this is couldn't have any thing to do with the steroids. To me why did it happen at that time.
Please continue to pray for Erik and our family.
Also on June 11th there is a fund raiser to raise money for childhood cancer. Please visit www.alexslemonade.com and www.caringbridge.org/nj/samigray for the story of Alexs Lemonaide Stand.
The fund raiser/Lemonade Stand will be at
Gray's Family Foto
411 Rt. 206
Hillsborough, NJ
908-359-5590
Nicholas Hope from Lambertville also came. He is only four and is batteling a brain tumor. What special children and special parents they are. There is always such a sad feeling after Relay. Such a power of remembering.
Norma
We enjoyed lunch on the way home at Apple Bee's and later shopped.
We are now preparing the The Relay For Life tomorrow. Erik was walk again this year.
Norma
Erik loves to play video games and playing basketball. His likes and dislikes are that of a normal 13 year old boy but yet he stands taller in my eyes. He has been threw so much and has endured all like a champion. I only wish I could have as much courage as he. Our family receives strength from each other.
Erik will be walking in the Relay once again this weekend. We are praying for a nice weekend.
Erik has taken all of his steroids and we wait for a change in his hearing. Praying every day that it will return again.
No matter what he is a survivor in every way. My Hero!
He has to go back to see Doctor in six weeks and they will check his hearing again. Although it is both ears and lower, it is about the same range of lose that he had in February. It's just that it is both ear now. Not sure what the next step will be after the visit in six weeks. Hopefull the medication will bring back some/all of his hearing.
Please keep Erik in your prayers.
Norma
Erik went today to see Dr. Potsic at CHOP. He is going to put him on a mild steroid and check him again in six weeks.
We ask for prayers for Erik. He has been threw so much. He is truly our hero!
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