December 26, 2007
Here are a few photos from the past several weeks!! Valerie Fund's Christmas party and The Hope Concert!!!! Have a great day
December 27, 2007
Like most of you all, our week was very busy. Luke has been feeling good. Besides from getting into his daily mischief, he is doing great. We are getting ready to leave for Vermont in the morning. The kids are very excited to get there. We are hoping to get Luke on skies for the first time. Last year this time when we were there all he wanted to do was lay on the couch. I'm sure this year he will have a lot more energy. Next Friday we will be back up at the Valerie for chemo. For now we will just focus on having a Happy New Year!!! 2008 has got to be better then 2007 for all of us!!
January 1, 2008
HAPPY NEW YEAR!!!!!
We've had a busy week here in Vermont. The kids had fun skiing and Eddie did excellent on his new snowboard. Luke had fun the first day, but by day two he was done. He had more fun laying on his back throwing snow at us rather then skiing. Last night Luke had a 99.5 temp and we were getting nervous. The last time he was in the 99's it spiked real quick. Needless to say, at about 9:30 I had the truck cleaned off and ready to go. Thank god it went back down.
It has been snowing since we arrived. This morning we planned on having breakfast and hitting the road but a new storm moved in and it is currently like a blizzard out. They are calling for about 15 inches and the snow to stop around 2am, so I guess we will head out in the morning. I would rather be stuck here then on the road. I have some great pictures to share but we only have dial up here. It would take me most of 2008 to upload. . Have a healthy and happy new year. ED
January 4, 2008
What a long day at the Valerie today. Luke had a full day. He had his port accessed, which is always the same routine, three or four bathroom visits before nurse Kelly could actually access it. He had Vincristine, and a 1 hour antibiotic drip administered into his port. The antibiotic drip will be given once a month, rather then three days a week of fighting him to take it orally. This antibiotic is so important for him to have it protects him against some nasty form of pnemonia. It's the one medication he has a hard time taking, everything else he takes like a champ.
Luke has lost about 3lbs since December 18th. I've noticed his clothes are beginning to sag on him, must of been all the exercise he had in Vermont. I wish the exercise had that effect on myself. To add more stress to the visit Luke had to have the last of his flu shot, which by the way was given after his lunch( it wasn't pretty). Today begins 5 days of steroids, this is the day of the month I dislike the most. And so, we continue on with our daily routine of beating Cancer!!!!!
January 6, 2008
Well the grump has returned. Luke's mood is in full swing. The steroids have really kicked in. I can't believe how fast it changes his mood. Poor Eddie seems to be getting the worst of it. He has several scratches on his face from Luke's steroid rage. We are trying our best to discipline him, but we also feel sorry for him at the same time. What do you do? With all the medication he received this week, he must be feeling pretty gross inside. This is just one of the many issues we have to deal with over the next two and a half years. On the other hand, we are so lucky for what we have. We are just gonna have to deal with it. Oh No, screams from upstairs. He is at it again! Have a great night.
January 7, 2008
It's been a tuff day in this house today. Luke spent most of his day crying and screaming. One minute he is crying and his emotions are so weepy, then the next he is yelling and trying to order me around. His appetite is in full force. Hotdogs, seems to be all he wants. Well tomorrow will be his last day of steriods for the month. In a few days we will have our normal Luke back. Can't wait!!
January 10, 2008
Things are slowly returning to normal around here. It takes about 10 days from start to finish on the Dexamethosone to have Luke feeling good again. His appetite this time around was enormous, I'm sure he gained back the 3lbs he had lost. Tonight is his big oral chemo night. We are very grateful that his body is really adjusting to all the oral meds. For the most part he is feeling well, and running around outside with Eddie and his friends. That makes me very happy to see!!! Have a good night!!
January 14, 2008
We have 26 more months of steroids left. I hope we all survive. Luke has been doing well except for waking up on Saturday morning looking like his pink eye(conjunctivitis) was back. The drops clear it up instantly, but he just can't seem to get rid of it. It just keeps lingering around.
Sarah was home today not feeling well. She has a brutal cough that won't go away. For those of you who know Luke, know that he is very "hands on" if you know what I mean. You can't keep him away from what he wants. So keeping him away from Sarah is impossible, let alone her juicebox. I guess we will just keep our fingers crossed and hope for the best.
All the kids are now singing Karaoke with Sarah's new Karaoke machine. (Thanks Santa!!!) Sarah is so serious and Luke just wants to make funny noises and drive her crazy. I guess that is what brothers do to sisters. Wednesday we are back up to the Valerie for a CBC (finger stick) and checkup.
Have a great night!
Watch the Channel 9 newsclip on the Hope Concert http://www.thevaleriefund.org/newsvideo.asp
January 16, 2008
Today we had a visit at the Valerie. Luke had bloodwork and his counts are OK. Today was the first time he's had it without throwing up...Yippee yeah..There is no change in his oral chemo for the week. His white blood count is a little on the low side. 2.4, which means we have to stay clear of any infections or viruses. All in all, the doctor thinks he looks good. He did have a 2lb weight gain since his last visit. HOTDOGS!!!!! LOL
On another note, we were told today Luke needs surgery on his testicle. He has a hydra seal, it's something he was born with. When he goes on steroids it causes fluid build up and swelling in his testicles which can be very dangerous. In a few weeks we are off to the Urologist to take care of this problem. Not sure if we are going to stay local or head to CHOP in Philadelphia for this procedure. Just something else to worry about. Have a great night.
January 21, 2008
Hi All,
Well Luke seemed to have a good weekend. Today we took Luke and Eddie bowling. It was the first time Luke ever bowled. The first game he didn't do so well, but by the second game he bowled a whopping 24. He would throw the ball and wait until the gate would come down, before walking back to us. We were lucky because it must have been the first time the family next to us bowled as well. I think the father and mother had a 24 combined. They also didn't know that you were supposed to wait your turn, so Luke taking his time was no big deal. We had a lot of fun.
Luke is now running around playing with the dogs. I don't know where he gets his energy, but thank god he does. This is our off week with the Valerie, so that is always a good thing.
Have a great night! Ed LETS GO BIG BLUE!!!!!
January 24th 2008
Hi All,
On Tuesday of this week we received a nice surprise. Debbie Schmidt of Ecoquest International gave us an EcoQuest air purification system. The past two days we have been running this machine and the house smells so fresh. The machine kills 99% of mold, fungi, bacteria and viruses in the air and on surfaces. Debbie has come to know us through mutual friends and has been following Luke's webpage. She is a distributor for the company and thought this will help keep our Luke healthy. Thank you so much Debbie for thinking of Luke. It amazes me how Luke’s illness has brought so many kind people into our lives. Thanks again.
Today Luke has to take Methotrexate along with the 6mp, which are eight pills in total. I don’t know how the heck he chews it all, but he does. It doesn’t seem to slow him down at all. He is now teasing Eddie and Sarah while they all are playing Dance Dance revolution on Playstation.
Today Luke spent most of the day with Jeanine, before deciding to visit Aunt Michelle Glen and Cora where he watched movies. At least that’s what he told me. For more information on the EcoQuest system please visit www.freshairliving.com/james697
Passcode GUEST, or call Debbie at 973-895-7999
Thanks again Debbie. Have a great night. ED
Hi All,
On Tuesday of this week we received a nice surprise. Debbie Schmidt of Ecoquest International gave us an EcoQuest air purification system. The past two days we have been running this machine and the house smells so fresh. The machine kills 99% of mold, fungi, bacteria and viruses in the air and on surfaces. Debbie has come to know us through mutual friends and has been following Luke's webpage. She is a distributor for the company and thought this will help keep our Luke healthy. Thank you so much Debbie for thinking of Luke. It amazes me how Luke’s illness has brought so many kind people into our lives. Thanks again.
Today Luke has to take Methotrexate along with the 6mp, which are eight pills in total. I don’t know how the heck he chews it all, but he does. It doesn’t seem to slow him down at all. He is now teasing Eddie and Sarah while they all are playing Dance Dance revolution on Playstation.
Today Luke spent most of the day with Jeanine, before deciding to visit Aunt Michelle Glen and Cora where he watched movies. At least that’s what he told me. For more information on the EcoQuest system please visit www.freshairliving.com/james697
Passcode GUEST, or call Debbie at 973-895-7999
Thanks again Debbie. Have a great night. ED
.January 26th 2008
Hi All,
Last evening he went to a dinner party at the Salt Creek with all of the board members of the Hope for Children Foundation. We planned to have dinner after the holidays to celebrate the success of the November 2nd event, as well as discussed the upcoming event November 7th 2008 (please save the date).
Jeanine and I were very surprised when we were presented two certificates. The first certificate was for $17,500 to help with Luke’s medical expenses. The second certificate was for a $5,000 college fund for our Luke. I have to say I was speechless.
I want to thank Marybeth, Eric, Karen and all the rest of the board members for what you did for us, and for all you do for others. You are all amazing people and I am honored to have you all as friends.
Today Luke had his first haircut since I shaved off what was left in August. It was funny because I walked in to the barber in town and Jimmy the Barber said Hi Luke! Meanwhile he hasn’t been there since June. After the haircut we walked over to Sabato’s Prime Meats and I heard it again. Hey Luke! Everywhere we go someone seems to know Luke.
Below are pictures of his new haircut. He was so serious in the seat when he was getting his hair cut. I wish I had the camera then. Have a great night! ED
Luke's new haircut.
Luke in Vermont
January 28, 2007
Luke's been feeling pretty well. Today I kept Sarah home from school she was complaining of a sore throat and headache. If it continues we will be visiting Dr. Gawler in the morning. Wednesday we have to be back up at the Valerie for chemo, antibiotic, blood work and the start of steroids again (FUN). Luke will also be seeing the Urologist on Feb 5th, boy I dread that visit he seems to have a problem with Doctors messing with his parts. It seems there is never a dull moment in this house. Sunday, Ed spent most of the day removing the toilet bowl to find a Purell bottle wedged in the plumbing. I wonder who flushed that down the toilet! Luke told us he doesn't know who did it. yeah right!!!!! Have a great night.
January 31, 2008
Luke's hospital visit went well yesterday (long but well). Although, it's always the same routine his nerves instantly take over and he starts throwing up before nurse Kelly can acess his port. We have become pretty use to this routine. Tonight was Luke's big oral chemo night. Along with steriods and his daily 6mp pills. I did notice today he was looking very pale with dark circles around his eyes. Tonight he's like the energizer bunny he keeps going and going and going. (Thankfully)
February 4, 2008
Luke had a good weekend. I'm glad to save we survived another round of steroids and this time around wasn't so bad. His appetite was enormous, hotdog's with cheese. Luke couldn't get enough of them. Tomorrow's Urologist appointment was canceled due to a mix up in their schedule. We will now go on February 21. Friday we will be back up at the Valerie for a CBC and checkup. Boy these every other week visits sure come quick. Yesterday Luke received a care package from The Naked Brothers Band. For those of you that don't know who they are, they are the hottest new kids band and have there own show on Nickelodeon. Our good friends Phil and Gina who work in the industry were able to get us autographed drumsticks, poster and CD's. The drumsticks were actually used in their video shoot and were signed just for Luke. Pretty cool!! Thank you so much Phil and Gina for thinking of Luke . I just went through the bag with him and he was very excited. I am getting this framed for his room so it will be around for years to come. Have a great night!
February 8, 2008
Hi All,
Today I brought Luke up to the Valerie for a CBC (blood test) and a check up. Everything went well. Luke gained two pounds since his last visit. Those steroids really make him eat. The past few nights, Luke has been not sleeping to well. He seems to be waking up three to four times a night. I can’t imagine how he feels with all those drugs running through his system. I know what it is like to be restless and it stinks. He will then knock on our wall for room service. He usually demands chocolate milk and the remote control for a little late night Nicklodeon. I guess it is better then screaming and waking up the dog pound, which is what he used to do.
On Sunday Jeanine and I leave for a week in Cancun. My mother and Jeanine’s Mom will be helping with the kids. (have fun!!! LOL) The thought of sleeping without banging on the walls and dogs barking is all I can think of. Pretty sad Huh!
Have a great night. ED
Hi All,
Today I brought Luke up to the Valerie for a CBC (blood test) and a check up. Everything went well. Luke gained two pounds since his last visit. Those steroids really make him eat. The past few nights, Luke has been not sleeping to well. He seems to be waking up three to four times a night. I can’t imagine how he feels with all those drugs running through his system. I know what it is like to be restless and it stinks. He will then knock on our wall for room service. He usually demands chocolate milk and the remote control for a little late night Nicklodeon. I guess it is better then screaming and waking up the dog pound, which is what he used to do.
On Sunday Jeanine and I leave for a week in Cancun. My mother and Jeanine’s Mom will be helping with the kids. (have fun!!! LOL) The thought of sleeping without banging on the walls and dogs barking is all I can think of. Pretty sad Huh!
Have a great night. ED
February 18, 2008
Hi Everyone!!
Sorry for the delayed update. We are back from Mexico and had a very relaxing time. This time last year we had a 10 day trip to Mexico planned with the kids. Unfortunately we were hit with Luke's diagnosis. With Luke doing well, we decided to get away. We would of loved to bring the kids but are nervous enough going to Vermont, let alone to Mexico. Besides the thought of no responsibility for a week sounded great. I couldn't imagine being in Mexico and having him get a fever.The only words I can say in Spanish are uno mas, cervesa and hola, so they had to stay home. LOL
Both Grandma's said Luke was great and thankfully he stayed healthy while we were away. The RIU Palace was beautiful. We said when Luke is finished with his treatment we are all going back to celebrate (May 21, 2010 last chemo treatment).
We will be back up at the Valerie on Wednesday for CBC and checkup. Thursday we have an appointment with the Urologist. The following Wednesday we have pediatric daystay which Luke will receive a spinal tap of Methotrexate, Vincristine in his port and the start of steroids once again. Have a great night and thanks for your prayers!
February 20, 2008
Today's visit went well. Luke seems to be getting a little more relaxed with his finger stick, we only had one bathroom trip. It was nice to see some of our Valerie Fund friends. Luke had a visit with Tilly (the therapy dog). We also met with the new Doctor. She was recently transferred over from Children's Hospital of Philadelphia. She was extremely thorough with his exam, which was very good. Tomorrow we will meet with the Urologist and see what he has to say. Luke will not be pleased with that visit, considering he's not happy with Doctors messing with his privates. Have a great night.
February 22, 2008
Yesterday we met with Dr. Vates the Urologist. Luke's Hydrocele is not a cause for concern right now. He will have another ultrasound on it in 6 months. This is good news, no surgery (for now). Last night was his big oral chemo night. It amazes us how he has adapted to all his medication. In the beginning it was horrible seeing him with night sweats and nausea.
Today Luke, Sarah and Cora had a blast in the snow, they had a great time building a snowman. Maybe tonight he will sleep soundly. Today I filled out papers for Luke's enrollment for Kindergarten. I can't believe he will be going to school in September. I wanted to hold him back a year, being in Chemotherapy treatment leaves him very vulnerable to viruses, but we have decided Luke going to school will be good for all of us. Have a great night.
February 26, 2008
Please keep Luke in your prayers tonight. He has a spinal tap of Methotrexate in the morning, along with Vincristine and the start of steriods (again). Luke will not be pleased to have to his port accessed. But hopefully it won't be to bad. With this procedure he is put to sleep and feels no pain, he just wakes up with a bandage on his back. Which is a good thing. Have a good night everyone!!!
February 27, 2008
Today's hospital visit went well and Luke was a real soldier. Although got very nervous and made his traditional bathroom run, he didn't get sick this time. It just breaks my heart to see him hooked up to all of the machines. He gets so upset.
It is now 9PM and he is running around driving us nuts. By looking at him, you would never think that he received all the chemo he did today. All Luke's blood work was good. They did up his chemo dosage because of his weight gain. He has grown so much over the last several months.
We have now entered cycle 3 of the Maintenance phase, each cycle is 84 days. We have 9 more cycles to go, which will bring us to May 2010. It seems so far away, but then again I cant believe we are almost a year in.
Have a great night! Ed
March 1, 2008
Luke's been CRAZY the last few days from all the chemo he received on Wednesday. The steriods have kicked in hard making him very cranky, short tempered and emotional. The Vincristine causes constipation which leads to belly pain. I've had to give him some Ativan (valium) to calm him down, which I really don't like to do but under the circumstances I have to. This week is Kindergarten registration, I can't imagine him going to school being on this steriod. Well I guess we will worry about that when the time comes!! For now we have to get through the next week!!!! Have a good weekend
March 6th 2008
Hi All,
Sorry for the delay in updating. Work has been crazy and the house has been crazier. Luke seems to be getting bigger this round of steroids."Can you say Chunky Monkey"
All he seems to do is want to eat and annoy us. We feel so bad for him, but he has really been wearing us thin. So much for our vacation, that mental health disappeared the week we returned. He knows how far he can push us and seems to exceed his limit every night. Although I seem to think he is funny for the first hour or two, Jeanine has had enough by 8pm. It is funny because all day when his brother and sister are in school, he seems to lay around and do nothing, but when they get home, his energy that he saved all comes out. Every night it takes about two hours just to settle him down and get him in bed. Just as we lay down, he starts knocking on the wall for a mid evening snack and God only knows what he wants. The 5 days of steroids take about 15 days to get out of his system. This means that every 15 days are crazy. We cant wait until the weekend!!!!!
Tomorrow we are having a fund raiser at the Belford Elks for Luke. Everyone has been working hard to make it a great night. Thanks Aunt Michele, Grandma Rose, Aunt Liz, Aunt Barbara, Aunt Jeanne, Linda Apel, The Kelly's and everyone who has put so much time and energy on making tomorrow a huge success. I will update the webpage with pictures this weekend. Thanks for all of your prayers and have a great night! Ed
March 10, 2008
Luke continues to feel well. My only complaint is his expanding waist line, due to the monthly steriods. He has become so thick around his waist, I need to go out and buy him all new pants. This month his appetite was enormous. What's happening is he's eating so much two weeks out of the month, then his appetite returns to normal, and boom back on steriods. It's just a vicious cycle.
Friday night was amazing, we all had so much fun. Everyone worked so hard. Once again I'll say it "we are so lucky to have so much love and support from our family and friends" it's so overwhelming. Thank you to all that made Friday a terrific night. It was so nice to see friends that we have'nt seen in so long. Well Wednesday we will be back up at the Valerie for a checkup and bloodwork. I'm curious to see what his weight gain was from two weeks ago. Have a great night!!
Hi All,
I Want to start by thanking everyone for being so kind and helpful the past 354 days. Every day we are hit with negatives, from reading the paper in the morning to watching the news at night. There is so much negative in the world. Sometimes it is hard to remember the positive and how good we have it. Like Nonnie said this weekend to my children, The man with no shoes thinks life stinks, until he meets the man with no feet. Be grateful with the hand you are dealt because it can always be worse. ( I love Nonnie's sayings)
Our friends, family and the community has been so helpful and supportive during our trying times and we are grateful for having all of you. Friday night was awesome. I am lost for words when I see all of the support that is there for us time and time again. For those of you who could not make the event on Friday, Luke is now an honoree member of the Middletown Elks. I cant wait until his 21st birthday so we can visit again.
Today I met a new client who is an Oncology Nurse. In speaking with her, I mentioned that we have something in common and I told her about Luke. She told me that we have more in common then I know, her six year old son was diagnosed with ALL Leukemia 17 years ago. Her son is now 23 years old and doing great. She became an Oncology Nurse after her son was cured. It was neat to here of another survivor, and how she has now made helping others her life.
Luke's visit to the Valerie went well today. His counts are low and his immune system is very low. Today Jeanine went out shopping for new clothes for the Lukester. He gained a half of a pound the past two weeks and has gotten much taller over the past year. He is becoming a big kid. Have a great night! ED
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March 17, 2008
Happy St. Patrick's Day!!!!
Luke has been doing very well. He had a great weekend. It was cousins weekend. Friday night with Cora and Glen, Saturday night with Justin and Ryan. The kids had a sleep over with Aunt Marybeth on Saturday night as well. So I'm very happy to post all is good here. This is our off week at the Valerie, although tomorrow Luke will visit the dentist. He seems to have a very large cavity that needs to be filled. This should be very interesting!!!
March 18th 2008
Hi All,
Today went well with Luke at the dentist. He was a little freaked out when we entered the room and he saw the chair and all of the tools. I guess that can be a little intimidating if you have never been there and has experienced what he has the past year.
The Dentist did find several cavities and wants to see him again real soon. Luke chews all of his oral medication and this can be why the cavities are present. Know one seems to know if this causes damage. Everyone we ask never knew of anyone to chew Chemo. We have to talk to the Valerie because he has to be on antibiotics prior to having tools in his mouth. I also want his counts higher. The doctor told us that the Chemo can have long term effects to the growth of his permanent teeth. Lets just hope that he gets my dinosaur teeth. No Chemo can effect them. LOL. I am not sure how the next visit will go when he has to take X-rays. Sarah and Eddie aren't the best dental patients. Worst case scenario, we can get all of the work done at the hospital under anesthesia. I will post pictures as soon as I can. He looks nervous!
Have a great night! Ed
March 22nd 2008
Hi All,
Yesterday was a crazy day. It started bitter sweet, bitter being the one year anniversary of the worst day of my life and sweet because we are one year down with two years to go. " with the help of God" Being Good Friday, my plan was to get home from work early, cook pasta,seafood (Uncle Gary's Clams) and relax. Around two o'clock Jeanine called and told me Luke was not feeling well and just threw up. I was home shortly after and we called the Valerie. By four we were in a room at MMC and spending the night. This always seems to happen at the end of the week and if the Saints from the Valerie leave for the weekend, we are subject to General Population and the lovely ER. The Valerie had us in our own room within the hour. Thanks guys!!!!!
Upon being admitted, we were visited by Dr. Apollonsky. She told me that they had to determine what was causing the fever. With Luke's counts being low, and having a port, he always has the risk of getting an infection and this is always are biggest concern. After two attempts of trying to access his port and two bathroom runs, Luke was hooked up to an antibiotic and blood cultures were taken. Luke was spiking a fever of 101.5 and by 11PM it was 103. Jeanine agreed to bite the bullet and spend the night.
Today Luke seems to be feeling better this morning and is now playing with his DS (handheld video game) and watching cartoons. His temp is now down to 100. We have to wait for the results of the cultures before we know if we are leaving. Lets just hope that we can go home, color eggs and get out of this place. Thanks for your prayers! Ed
March 23, 2008
We came home late yesterday afternoon. The Doctor seems to think Luke has a Virus. All of his cultures came back negative, as well as the flu test. He still had a fever of 101 when they discharged us. The Doctor said as long as Luke was drinking and eating we would be able to go home. The fever can be treated with Tylenol since his blood cultures came back negative. The Doctor knew we really wanted to be home for Easter and we promised her if Luke still wasn't feeling well and running a fever, that we would call her right away.
Have a Happy Easter everyone!!
March 26, 2008
Today's hospital visit was very long (4hours). Luke made 10 bathroom trips before the Nurse was able to access his port. Friday when Luke was admitted to the Pediatric floor with a fever the nurse missed his port and stuck him in his chest with the needle (which by the way is very large). The Valerie Fund's nurses are much better when it comes to accessing ports, although today he had a great deal of anxiety about it. I felt really bad for him, but then the other side of me was getting very annoyed. It took about 1 hour to finally get him accessed. Luke had his Chemo and antibiotic, tonight he starts with another 5 days of steriods. Then we were off to where else but Toy's R Us, we have a very spoiled boy from all this.
Tomorrow we are off to the Dentist for a cleaning and Xrays. The Dentist will be able to tell us if the chemo is effecting his adult teeth. Let's hope that visit goes a little better!!!!
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March 27, 2008
Today's Dentist visit was completely exhausting. Trying to convince Luke that the Dentist was not going to hurt him took a lot of work. It also would'nt off been complete with out Luke running off to the restroom not once but twice in the middle of his exam. The bathroom has become his safe place to be. Luke needs to have a tooth pulled and several cavities filled. This will all be done under anesthesia in Monmouth Medical (thankfully not in the office). Have a good weekend!!
April 8th, 2008
Hi All,
Sorry for the delayed update, we have been having problems with the web page again. It's not easy being a webmaster. LOL We also are having a problem linking www.lukewalz.com to the updated website, so people who have been following the original page may not have access. Hopefully I will get it figured out soon.
We also have reached another milestone since my last update, over 20,000 hits! That’s incredible, 20,000 thoughts and prayers for our Luke and they are working. Thank you.
The little comedian is doing fine. The past week he has been pushing us and driving us a little crazy. He knows exactly how far he can go without crossing the infamous line. My line seems to be a little further than Jeanine's being that I leave for work in the morning and don't spend the whole day with him. He is always smiling and always makes me laugh. Tonight when we were putting him to bed, I heard him say poopie head under his breath. When I questioned him on who he was talking to, he said the refrigerator (with a little smirk). The refrigerator is a poopie head! As he saw my expression, he then said he bets his tongue isn't black as he crossed his eyes trying to see what color his tongue was. For those of you that may not know what I am talking about, growing up we were always told that if you told a lie, your tongue would turn black. When I told him it was red and I knew he would never say that to me, he smirked again, said good night Dad I love you and proceeded upstairs to bed.
Tomorrow we head up to the Valerie for a CBC (finger stick) and a checkup. Hopefully his counts are fine, all goes well and we can continue with business as usual.
Have a great night! Ed
Hi All,
Sorry for the delayed update, we have been having problems with the web page again. It's not easy being a webmaster. LOL We also are having a problem linking www.lukewalz.com to the updated website, so people who have been following the original page may not have access. Hopefully I will get it figured out soon.
We also have reached another milestone since my last update, over 20,000 hits! That’s incredible, 20,000 thoughts and prayers for our Luke and they are working. Thank you.
The little comedian is doing fine. The past week he has been pushing us and driving us a little crazy. He knows exactly how far he can go without crossing the infamous line. My line seems to be a little further than Jeanine's being that I leave for work in the morning and don't spend the whole day with him. He is always smiling and always makes me laugh. Tonight when we were putting him to bed, I heard him say poopie head under his breath. When I questioned him on who he was talking to, he said the refrigerator (with a little smirk). The refrigerator is a poopie head! As he saw my expression, he then said he bets his tongue isn't black as he crossed his eyes trying to see what color his tongue was. For those of you that may not know what I am talking about, growing up we were always told that if you told a lie, your tongue would turn black. When I told him it was red and I knew he would never say that to me, he smirked again, said good night Dad I love you and proceeded upstairs to bed.
Tomorrow we head up to the Valerie for a CBC (finger stick) and a checkup. Hopefully his counts are fine, all goes well and we can continue with business as usual.
Have a great night! Ed
March 31, 2008
Luke's been feeling well. The steroids do have him a little crazy. He's had several rage's along with a few melt downs. Today he complained quite a few times of leg pain, that would be from the Vincristine he had on Wednesday. We are free of Doctor visits this week, Luke and myself are very happy about that. Last week was just too much to handle!!!
April 9th 2008
Hi All,
Hope all is well.
After updating last night, I was able to get the web site running 100%. It only took me two hours and amazingly no wine. Welcome back to all of the people who were left in the dark when www.lukewalz.com went offline.
Today's visit went without a hitch and everything went well. Luke told me that he didn't cry and only went to the bathroom once. Our friends at the Valerie also taught Luke how to access a port. He practiced on Avery the doll and is now a pro.
We just finished playing soccer and baseball outside and Luke was the high scorer. He is actually a pretty good little player. I cant wait until next year when he can play on a team. Based on his ball control and the way he chugs down the field, I am thinking forward and I feel sorry for the kids who get in his way. He likes to use his elbows. I also hope the league doesn't do drug testing. LOL. Have a great night! Ed
Luke with Avery at the Valerie Center
April 17th 2008
Hi All,
Luke is doing well ,but was a little sluggish today. Yesterday was this big dose of oral Chemo so this is probably why he was moping around. Luke dragged Jeanine to find a new toy and he was lucky enough to find a new Power Ranger toy at Toys R Us .Just when we thought he had every Power Ranger toy ever made.
Tomorrow Luke has orientation for Kindergarten. Life as he knows it is over in just a few months. This is bitter sweet for me. At first our thoughts were to keep him back and out of general population, but after kicking it around, Jeanine and I decided that it will be good for him. He needs to be with other little people and away from Mom for a little bit. I just feel bad for his teacher and class the 5 days a month when Luke is on Steroids. Poor little kids.! . LOL This is an off week for us with the Valerie. Next week we are up for Vincristine in his port. Have a great night. Ed
April 22ND 2008
H All,
All is well at our house this week. I Recently figured out that you are able to send pictures from your cell phone to your e-mail and I have some pictures I have taken the past year that I would like to share with all of you. We are so blessed that Luke is always smiling. I honestly don't know how I would be today if I didn't have his positive attitude behind us. Tomorrow we are up to the Valerie for Vincristine in his port and we also are starting steroids again. So much for a semi-normal household, Tomorrow we are back to our steroid crazed Luke. Just as I was enjoying a full night sleep. LOL Have a great night. Ed
April 23rd, 2008
Hi All,
Today went as well as it could go. Luke's Liver enzimes are higher then they should be which has us nervous. This is something we will carefully watch and I am told not to be alarmed, any irregularaties always make me cringe.We arrived at the Valerie at 10:30am and it was a pretty quiet up there. We were in our room by 11am and home by 2:30. Luke was fine up until we were ready to leave the house and then he started to get upset. When we arrived at the hospital, we ran into Allison and Tilly in the hallway. Tilly is the therapy dog for the Valerie. Shortly after gettng a room, Tilly and luke decided to hide in the car from the Doctor. Kristen, Maria and Allison hung paper with bandaids and Luke was invisable. Only one bathroom run later, both Luke and Tilly were accessed. We pretended to access Tilly who is an English Bulldog. Tilly laid on her back as she was taped and gauzed. Poor Tilly. LOL
After receiving Vincristine, Luke and I watched The Wizard Of Oz while he received his antibiotic on a drip through his port. Aunt Beth made the mistake of calling me just as Luke was being accessed. I was going to shut the phone down when Luke asked who was calling. When I told him it was Aunt Beth, he wanted to answer. By the end of the call, both Luke and Beth were crying. Below is a picture of Luke in Toys R Us with Aunt Beth (sucker). Only kidding Aunt Beth. Steroids start tongiht. Lets hope all goes well. OMG, Jeanine is screaming as I type. Luke was frogging it today. (no underwear) The doctor probably thinks we are nuts. She checked him but I wasn't watching. Oh Well! Have a great night Ed
4-26-09
Hi All,
Well today the chemo started kicking in. Luke was sleeping at Eddie's soccer game at 9am. He has been tired and grumpy the past 48 hours. Below are some pictures from a Birthday party we went to on Friday. It was Luke's first party without Eddie and Sarah in attendance. He was extremely shy and very quiet. Put it this way I was the only adult that had to sit at the kids table..Fun Fun
Have a good night!!
April 30th, 2008
Hi All,
Today Luke had his hair cut. The morning started with Luke wanting a Mohawk, Personally after all we went through last year, I wouldn't mind if his hair grew down to his @ss. LOL I was also a little nervous bringing him to the hospital for treatment with a Mohawk, but I left for work excepting whatever they decided. When I arrived Home, I was happy to see the outcome. Jeanine was able to talk him into a short, more traditional crew cut with a flip top. I think they call it "The Ceaser".
The past few days have been OK, but Luke has been experiencing occasional stomach pain. He has had a lot of medicine the past week and is still suffering the effects of the steroids that he just finished on Sunday. Today he had three hotdog's, so although I will mention the stomach pain at our next visit, I am not that concerned unless it continues. Next week we have a checkup and day stay for Luke's dental work. That should be fun for the poor little guy. He is probably one of the only four year old that has to have a tooth pulled. The only promising thing is hopefully he inherits my dinosaur teeth and has no trouble in the future with his permanent teeth.
Have a great night! ED
May 7th, 2008
Hi All,
Today wasn't the best of days. We started by visiting the Valerie for a routine checkup and finger stick. Everything was going great, I did the finger stick with no bathroom visits and it looked like we would be out of there ASAP. The past two days Luke has had diarrhea. This is always a concern with his condition, but we definitely want to make sure he is healthy prior to getting his tooth pulled. We had to take a stool sample and we will have the results tomorrow.
During the checkup, Susan noticed that one of his testicles was harder than usual. We immediately were sent down for an ultrasound. Boys are treated with chemo 6 months longer for Leukemia because there is a higher probability that the cancer can come back in the testicles. I don't want to go into what would have to be done if "god forbid," this were the case.
Fortunately the doctors did not see anything in the ultrasound, but they are still very concerned. On Friday's visit, several doctors are going to check him again and they are also having us go to visit "CHOP" Children's Hospital of Philadelphia to see a Urologist for another opinion. If it is just the Hydrocele that is causing the problem, it will be corrected with surgery, otherwise a biopsy will have to be taken and checked. I can't explain the feeling that overtakes your body when this happens, but no parent should ever have to deal with this. Lets pray for the best outcome and I will update the page on Friday.
Thanks for your thoughts and prayers! Ed
I'd like to add a funny story from the Valerie yesterday. We first went in to the playroom yesterday and met the funniest little boy named Ray he is 7 years old. Ray was diagnosed not to long ago with Non Hodgkin-Lymphoma. Well Ray and Luke became instant friends playing Playstation together. He then asked with such pride and the BIGGEST smile on his face "does Luke have Cancer too because I do" you had to see his face I certainly will never forget it. He then went on to say that when you get to sleep over in the Hospital it's so COOL because you get to play with Xbox, playstation and the Wii. I then said to him "well it sounds like you really like sleeping here" he replied "yes it's so much fun!!!!!! Wow kids are really resilient. Having chemo and radiation in the hospital but yet they still find ways to have fun...It was very funny!!!
May 9th 2008
Hi All,
Every morning when Luke wakes up, I make a point of giving him a kiss and asking him how my favorite littlest boy is, and every morning regardless of what we have planned for that day, he replies DOOD (Good). Well today when I went in his room, kissed him on the head and asked him how he was, he replied I don't know! When I asked him what he meant by that, he replied "what they gonna do today". He was nervous because this whole teeth thing was new to him and when he asked me what they gonna do, I couldn't answer it because I wasn't sure. Luke seems to do much better when he knows what is going on as opposed to going in blind.
Today went great. Luke and I arrived at 7:30 and we waited until 8:30 before we were admitted to a room. Jeanine met us there just in time to help access his port. Today was tough, first a bathroom run for a #2 run and then he proceeded to throw up in the trash can. 30 minutes later, he was accessed and on his way for his dental work. The Dentist was able to cap and fill his teeth without extracting them, so I was happy. He thinks he is cool with his new silver tooth.
Tomorrow we are off to CHOP for an 8:30am appointment with the urologist. This is the one appointment which has kept me up the past two nights and we were lucky enough to have our friend Susan get us an appointment so soon. Lets hope it is just something stupid. I am a nervous wreck! Have a great night Ed
Luke on Happy medicine
May 10th 2008
Hi All,
Today went well. We left for CHOP at 7am and were there by 8:40. Luke woke up and all he wanted to know is what are they gonna do. We told him that they were just going to examine him. He replied and I quote " just look at my testicles and that's it!"
That is it!, I told him and he was happy.
CHOP looks like a pretty amazing place. A huge hospital just for children. When parking, I noticed licence plates from many different states. I noticed several different families walking around with the confused,and concerned looks on their faces. We were there for one reason, to get good news and head home.
Doctor's are funny, they never will give you an exact answer. Although they are probably right 95% of the time, they always answer your questions with an open ended answer. In meeting with the doctor today, he sounded pretty confident that Luke is OK. He was concerned that Luke had some discomfort on the right side, but all and all, everything felt OK. He told us that although everything feels OK, his fingers are not microscopes. He told us that his hydrocele needs to be fixed right away and to be on the safe side, do a biopsy on his testicle as well.
We scheduled this with him and we will know on Monday when we are going in for surgery . It should be day stay and hopefully this is past us by next weekend.
Have a great night. Ed
May 11, 2008
I hope all you Moms had a wonderful Mother's Day. Every single Mom deserves to be honored on this special day! We had a nice family dinner at Brother's Pizza tonight. I truly feel blessed to be the mother of four amazing children, who I would give the world for. I never thought in a million years that I would be "chosen" as a Mom who cares for a son with Leukemia. I now know why I was blessed with so many wonderful women in my life, my Grandmother's, Mother's, Sister's, Aunt's, Cousin's and friends. They all have teached me to be strong, have faith and stay positive. For this I thank them all. Please keep Luke in your prayers this week. Thank you everyone for being the BEST support system we could ever ask for!!!!!
Love Jeanine
May 14, 2008
Hi everyone
Luke has been feeling pretty well. He has finally caught up on his sleep from his busy Hospital visits from last week. Ed spoke with Children's Hospital of Philadelphia yesterday, and they confirmed Luke's appointment for surgery and biopsy on May 30th. For now Luke is thrilled not to have any more visits with Doctor's this week. Monday we will be back up at the Valerie for a Lumber puncture (spinal tap) for Methotrexate, and Vincristine in his port. He will also begin another round of steriods!!! Enjoy the weather today it's going to be beautiful!!!!
May 19, 2008
Hi All
Luke did well today. Early morning for him though, we had to be at pedi-day stay for 7:30am. We always seem to get the early appointments. We have been a little concerned with all his bruises he has be getting on his legs, but Dr. Applonsky told us his counts were great. I'm happy to know we now have one more spinal tap behind us (12 to go)..Have a great night!!
Alison sorry we missed you. We did go looking for you and Tilly. See you in 2 weeks.. Give Tilly a big smooch from Luke!!
May 27, 2008
Hi everyone
Boy time goes by so fast, it's been 9 days since we last updated Luke's website. We had a great weekend. Ed opened the pool and we celebrated Grandpa Don's 70th Birthday. Today Luke wasn't feeling very well. By 9:30pm he was admitted in to the hospital. He had a 101 fever and complaining that his ear hurt. Let's hope it's just an ear infection. Friday he is scheduled to have his surgery and biopsy. I'm thinking they might postpone it, we wll see. Hopefully tomorrow his blood cultures will rule out bacteria infection. I felt so bad for him driving to the hospital, he worrys so much about having his port accessed. Which by the way they missed the first time so they had to do it twice. He was so nervous after the nurse missed the first time he threw up for 5 minutes. The nurses felt it would be best if one nurse held the port straight while the other stuck the needle in it. Luke's port tends to slip down making it difficult sometimes to access. Luckily it worked and they did'nt have to do it again.
Alison if you and Tilly are around we would love to see you!!!!!
May 28th 2008
Hi All,
So much for a relaxing holiday weekend and BANG! 3 hours sleep in an less than average, old, narrow, ugly blue recliner, with nurse visits every hour. Do I sound TIRED AND GRUMPY? LOL.
Well, enough about my pain, it is now 8:15pm and Luke, Jeanine and I are still in MMC. We were told that if Luke did not get a fever today, we should be able to go home around 10pm. I ran home around 5pm to take a shower and before I made it home, Jeanine called and told me that his temp was on the rise. It went as high as 100.5 which is just high enough to keep us here another night. Luke sounds like he has a head cold. With him still running a fever, we have to await the results of his blood culture to make sure everything is OK prior to leaving. I would hate to go home and have to come back and re-access him because we rushed out of here to sleep in our own beds. If all goes well, we will be home in the morning and have the remainder of the day off before heading to CHOP for an early Friday morning surgery. CHOP called today and told us that they want to see him before determining if they can operate. A huge part of me wants to get it over with, but I highly doubt it is gonna happen by listening to him.
Thanks for your prayers and thoughts. Ed .
DADDY'S BED !!!!!!! LOL
Luke being silly
5-29-08
Hi All,
Well, Luke is home and we are headed off to CHOP in the morning for a 10:45am surgery. We will probably be leaving around 7:30-8 to make sure we get there in time and don't rush. We were told that they want to get this done as soon as possible. I was originally concerned about his cough and congestion, but they will check him out in the morning to make sure everything is OK prior to doing the procedure. If Luke gets any worse overnight, they will have to re-schedule.
To see Luke home again, you would not know he wasn't feeling well. Since I returned home from work he hasn't stopped running around like a little boy should. to look at him you would never know he was hospitalized the past two days.
Luke cannot eat after midnight so our plan is to have him eat a good dinner and than Jeanine is going to make his favorite (Brownies) for desert. We all know Luke likes to eat, so this is going to be a task to get him out in the morning without breakfast. I am only going to have a small brownie and leave the rest of the tray for him. LOL. I will update the website as soon as possible tomorrow, but we need all the prayers we can get tonight to make sure my little man is all fixed and clean by this weekend. Thanks for all of your support. The Walz Family
5-31-08
Hello all,
Yesterday was a long day. We arrived at CHOP on time and they had us in a room within 5 minutes. What a great hospital. Everyone was so nice and the facilities were great. Three people checked Luke's lungs and we were informed we were moving forward with surgery. Luke was great, but a little nervous. He knew he was there for surgery, but didn't know what surgery was. His famous words (WHAT THEY GONNA DO) were heard over and over.
Everything went great! Luke was done within the hour and the doctor came out and told us that he reviewed the biopsy himself and everything looked OK, although it still had to be sent out for further review. We sat with Luke for about an hour and we were on our way home. Luke hasn't complained of pain since he has been home, but he has a 1.5 inch incision on his groin. Last night he also started running a fever. We thought we were headed back to MMC for the night, but in talking with the doctor, we decided to monitor his temp which dropped after midnight and we were able to get a decent night sleep. Today Luke was acting like his crazy self. I have reminded him probably 25 times about his incision and told him to calm down, but he never listens. LOL
Thanks for all of your prayers, we needed them and it looks like they have worked. Have a great night! ED
June 3, 2008
Hi All,
All has been pretty normal at the Walz house. Luke has been his crazy self and hasn't slowed down much the past few days. We still have not heard back on the biopsy. We were told it should take about a week. Tomorrow we are headed up to MMC for a check up and finger stick. In talking with Luke tonight, he was excited when I told him that that was all "they gonna do"
Have a great night and thank you for your prayers. ED
June 8, 2008
Luke had a Valerie visit on Wednesday. Dr. Sesche-Perl said he looks great. We were informed that there was a change to his protocol and moving forward, children will not be receiving the large amounts of steroids in the delayed intensification period. The study has showed that children have been having hip problems by receiving these large amounts of steroids and weighed the options and determined that the steroids will be cut back. Although Luke already received this, it effected older children more than children Luke's age. This is all just trial and error, lets just hope moving forward there is less error.
Still no final results on the biopsy though. It's a little frustrating how long something like this takes to get back. I'm happy to say the only Dr. we will be visiting this week is the Dentist, which he will just be looking and not probing his teeth. We've had a very eventful weekend and a very special one for that matter. Saturday, Sarah had her dance recital, she did terrific. She had Nonnie, Grandma Rose, Aunt Marybeth and Aunt Linda there rooting her on. It was so cute.
Eddie was chosen to participate in his Teachers wedding, which was in St. James Church in Red Bank. He looked so handsome in his suit. Although it was almost 100 degrees in Red Bank he survived. After the church we went on to celebrate Aunt Christine's 50th Birthday and had a great time!!!!
June 16th 2008
Hi All,
Sorry for the delay in updating. The web page company is always updating their software and make it a little difficult to update the page without disabling our security software. So another words, if I don't update, it don't get done. Luke is doing great and he can't wait for his birthday on Wednesday. Unfortunately he has to go in for Chemo, but I don't even thinks he cares. He just can't wait until Wednesday.
We still have not heard back with the results of the biopsy. I am hoping no news is good news. Luke has been spending a lot of time in the pool, but still cant swim. He gets nervous whenever I grab him, but he has to get over it. I will have him swimming like a fish in no time. Luke also has a new haircut just like his big brother. He looks so cute with his little tan and his new do. I will update the page on his birthday with some pictures and I am sure a few new stories. Thanks for your prayers.ED
June 24th 2008
SFS (sorry for Slacking)
Well it is official, Luke is officially a handful! 5 years old. His birthday started by him waking up with his bottom lip in the air knowing we had to go to the hospital and have his port accessed, but by 10:30 nurse Lisa had him accessed, Chemo administered and on our way home. Everything went well. We also finally got the results from the biopsy, Luke has an OUTSTANDING testical according to the write up. GREAT NEWS!!!!!
Luke had a great birthday. We just had immediate family over for pizza and cake and everything was great. Luke and his cousins went in the pool and had a lot of fun. Aunt Michele made a trampoline cake with figurines of Eddie, Sarah, Cora and Glen surrounding a trampoline and Luke jumping on it. It was awesome! The kids had a great time eating each other and ironically Luke got a trampoline for his birthday. He also got a drumset. He has been rocking, jumping and having a great time the past few days. Thanks for your prayers and have a great night. ED
7-01-08
Hi all,
SFS
Hi all,
SFS
Well we are down in LBI for two whole weeks. Luke is having a blast on the beach with Eddie, Sarah, Glen and Cora. Every year we rent a house together with Aunt Michele, Uncle Glen and the kids. The second week Jeanine's family rent houses in the area and we all have a blast.
Luke woke up upset today knowing that he has to leave the beach tomorrow and go to MMC, but we are lucky it is only for a finger stick and checkup. Hopefully we are back by 4.
Luke loves the beach, but after about four hours he has had it. So we head back to the house for a shower, sandwich and a drink. Juice box for Luke and something a little stronger for me. LOL.
This is our second year down here since Luke has been diagnosed and one more to go. Can't wait until we can stay the two weeks without going back, although this is much better than last year.
Looking forward to enjoying the next two weeks with little peace and a lot of relaxation.
Thanks for your prayers. Ed
Luke woke up upset today knowing that he has to leave the beach tomorrow and go to MMC, but we are lucky it is only for a finger stick and checkup. Hopefully we are back by 4.
Luke loves the beach, but after about four hours he has had it. So we head back to the house for a shower, sandwich and a drink. Juice box for Luke and something a little stronger for me. LOL.
This is our second year down here since Luke has been diagnosed and one more to go. Can't wait until we can stay the two weeks without going back, although this is much better than last year.
Looking forward to enjoying the next two weeks with little peace and a lot of relaxation.
Thanks for your prayers. Ed
7-8-08
Hi all,
Yesterday was a beautiful day on the beach, but as soon as we got on the parkway it started raining. Why were we on the parkway you ask? 100.8 fever so we were off to MMC. Luke has had a cough the past couple of days and I had the feeling on Sunday that it would be a miracle to make it the rest of the week without a fever. The doctor just left and agreed with me that it is just a cold and hopefully we are able to be released tonight. The hospital is packed and they are renovating so we are all jammed into Daystay. A roommate and not even my favorite blue chair. Luke and I had to share the undersized ,undercomfortable, hospital bed. Let's hope we are back in LBI tonight. Thanks for your prayers. Ed
7-9-08
Good morning,
We are back in LBI exactly 24 hours later. All of the tests came back negative. Luke was pumped with antibiotics for 20 hours and they said we were good to go. Thank god because that place was crazy. Well, I would love to write more but I want to get in some beach today before it probably starts raining. Have a great day. Ed
7-12-08
Its Saturday and this was our last day on vacation. What difference a year has made in our lives. Last year this time, we were preparing for our hardest battle, starting the worst part of Luke's treatment, delayed intensification. This year although vacation is over and we did have to spend 24 hours of the vacation in MMC, it was great to see Luke have so much fun and not worrying about what is in store for him when we return but actually looking forward to our return to Middletown, our house, the dogs and pool. It is great to be back.Ed
July 17, 2008
All I can say is "yippee it's summer"!!!! Last summer was terrible. Well except for our two weeks in LBI, which even there we were a nervous wreck. We have spent the last to nights on our boat, last night we took our dinner out with us and sat and watched the dolphins. They put on a show for us and about 10 others boats, it was amazing to see so close. We have'nt been on the boat since before Luke was diagnosed, he was 3 the last time he was on it and scared to death, he would sit in the cabin regardless to how hot it would get. Well last night he thought he was a big shot walking all around the boat. Ed and I vowed to make make this summer alot better for all of us. We are very excited to get to Vermont for a few days, but then I think of "what if Luke gets a fever" the nearest hospital is well over an hour away.
Yesterday we had a Valerie visit. Luke received Vincristine in his port. Yesterday also meant alot of oral meds, 7 methotrexate pills, 4 steriod pills and 2 6mp pills. Hopefully today he won't be feeling to bad from all of this. We will see. Tonight we have a pool party at Eddie's soccer coach's house, the kids are very excited for this. Hope everyone is enjoying there summer so far!!
Alison and Tilly we missed you two yesterday, hope your having fun on your vacation!!!!!
July 18, 2008
I watch you playing
without a care,
It's hard to believe
the cancer is there.
You look so bright
So happy and well,
If someone new met you
They could'nt tell.
Your strength is amazing,
Your courage so strong,
You've fought this disease
So well so long.
It's from your strength
That I draw mine,
I know you'll come through this,
It'll just take time.
Carry on smiling,
I will too,
Through the hard times
I'll carry you.
You are my world
The air I breathe,
I know in my heart
You'll never leave.
Keep strong my love,
the battle has begun,
but with your strength
It will be won.
....................................Lena Ford.....................................
7-21-08
Hi all,
Well ,the steroids and all the other stuff has kicked in. Luke is very emotional with this round . Last night was Jeanine's birthday and I gave her a bracelet from the kids, well Luke didn't here me say it was from him and he started crying because and I quote! "I borgot mommy's birday present" After crying for a few, both Luke, Jeanine and I "it was a little emotional", I was able to explain that he did get Mommy a present.
Tonight I came home from work and Luke wanted to go to Target for a new movie. He would not stop screaming so we were off. As soon as we walked in, he said he was not sure if he wanted a movie!. "STEROIDS, STEROIDS, STEROIDS".
Luke was screaming for everything in the store and I could not make him happy. Everybody in the store was staring and seemed to find us amusing. It is times like these when I want to have him where a shirt that says " I am on steroids and Chemo STOP LOOKING AT ME"
$60 dollars later we were on our way home and Luke seemed to be happy. My job as a dad was done!
Have a great night and thanks for your prayers. ED
7-24-08
Hi All,
Although Luke is still driving us crazy, he is much better than the last update. Last night we had a beach party in Sea Bright for the Valerie. As usual, they did a great job. Games for the kids, Holiday Express was playing outside, and free drinks inside. My kind of party. LOL. Of coarse sister Sarah sang with the band and Luke and Eddie had a great time playing games and winning prizes. It was great to see nurse Kelly who recently left the Valerie to get married and move to Washington DC. HOW DARE HER! Only kidding Kelly.
Kelly was the nurse that was with us the day Luke was diagnosed and will always be special to us. We were able to meet her future husband who she always spoke about for the past six months in the Valerie. After meeting him, I'm sure she will do fine. Hopefully they can come to my 40th and Luke's I'm Done Bash! in May of 2010 which your all invited to. Luke is now getting ready to play manhunt with Eddie's friends. Not sure if Eddie and his friends know yet. LOL Have a great weekend. ED
July 30, 2008
Today Luke had a well visit at the Valerie. After a CBC (bloodtest),we learned that Luke's ANC (white blood count) dropped down to 400 which is very low. The norm is around 1500 and the low leaves him very open to infection.
We were instructed to stop all meds for a week until his next CBC which will be next Wednesday. Unfortunatly, Luke was planning on going to the Keansburg Water Park today with his cousins ,but due to the low immune system, we had a NOGO. (dont need waterpark virus) LOL
We were also planning a trip to Vermont next Wednesday, but now we are delayed at least a day and if his counts are still down, we are going no where. OH WELL! thats life of a leukemia family!
We are trying to get Luke to sleep early the next few days, but those who know Luke, know he never slows down. So much for resting!
Thanks for your thoughts and prayers. ED
8-4-08
Hi All,
Well the past week has been nice with Luke and no medicine. You can see how that stuff effects him. He seems older this week. Although he is still a monkey, He has been acting much better than usual and looks great. I sometimes wonder how things would be if he was never diagnosed with this stupid disease. Would he be smaller, would he still have his surfer hair cut, would be be a little calmer, but then again if he was never diagnosed, I would have never met my BIG CRAZY LUKE! We are planning on heading out to Vermont on Thursday if all goes well on Wednesday. He is really looking forward to it. The computers don't work to well up there (remember Dial up) LOL! Thats what makes Vermont, Vermont!
I will update on Wednesday night and again when we return to NJ. Have a great night! ED
8-12-08
Hi All,
Sorry for not updating last week. All went well last week at the Valerie. Luke's counts went back to were they should be and we were off to Vermont. Luke had a great time. He would stay up to about 10 pm and sleep to about 11 am everyday. The temp in Vermont was in the low 70's during the day and low 50's in the evening. Perfect sleeping weather. Luke had a great time searching for frogs and salamanders with Eddie and Sarah and making Smores by the fire at night. It amazes us how when we are home they are always looking for someone to come over or somewhere to go, but when we are in VT. , they awake and disappear. They always have something planned for the next day. Sarah and Eddie mentioned moving up there full time, but when they ran it by Luke he said " What about my hospital, I have ukemia" We laughed and told him we only have two more years and he is done. He seemed a little less stressed and said OK maybe in two years.
Tomorrow we are headed to MMC for a spinal tap, Vincristine, Methotrexate, and he starts steroids. So much for relaxing and enjoying life! Thanks for your prayers. Ed
August 17th, 2008
Hi All,
Hope everyone is enjoying the last few good weeks of summer. Luke is doing great. Everything went as planned on Wednesday with his Meds. It usually takes a few days to slow him down, but as of now he is still the non-stop. (Energizer Bunny)
On the front page, I added an icon for Light the Night on October 4th. Last year we went just as a family and what an incredible night. The event is to help raise money for the Leukemia and Lymphoma Society. The Leukemia & Lymphoma Society funds lifesaving cancer research and has come so far in recent years. Survival rates have increased from 4% "if I was diagnosed when I was Luke's age" to almost 90% today. Pretty amazing Huh!
The event is held in Ocean Grove at night on the boardwalk. All Cancer survivors carry a white balloon with a light in it, while supporters carry a red lit balloon. It is pretty amazing to see all of the lit balloons walking throughout this beach town and down the board walk. Last year Luke wasn't in his best shape coming off delayed intensification, but was able to complete the 1 mile walk on his own. It was also very emotional to see his balloon was one of the lowest to the ground.
We met some pretty amazing people as well. We met Jessica who bicycled 100 miles for the Leukemia and Lymphoma Society with Luke's name on her shirt. She had never met Luke, but heard about his webpage through a friend who is also battling Leukemia. There are some pretty amazing people out there.
This year I want to bring a support team together for Luke. It is a very special night and I want Luke to feel special leading the pack with his white balloon with this friends and family behind him. For those who would like to join us, I can guarantee that it will be an unforgettable experience.
You should be able to sign up under Team Luke or Team Captain Jeanine Walz after clicking on the icon, but the last I checked the team was still not approved. I will keep trying and hopefully you can register by next week. Hope you can be part of our special night. Thanks for your prayers! ED
August 26th 2008
Hi All, Sorry for the delay in updating. We have been trying to get as much in before summer ends and Luke starts Kindergarten. Luke is doing great! Tomorrow we are off to the Valerie for a check-up and a finger stick. It should be an easy one. Last week Jeanine took all of the kids with aunt Michele and Grandma and headed back up to Vermont while I stayed home and enjoyed the peaceful, quiet and I must say BORING house during the evenings and worked all day. From what I hear, they had a ball again. None of the kids wanted to come home. Luke is looking forward to going to school next week. I cant believe it! Thanks to all who joined up for the Light the Night Walk. I know since this whole Leukemia thing has happened to us, I have become a little emotional, but I promise that for all of you who join us, it will be a memorable experience.I promise!
I want to end tonight's update by sharing an e-mail I recently received from a family friend who donated her hair to locks of love in Luke's name. We don't know where we would be without all of you and your support. Thank you! Ed
Hi Eddie,
Happy to hear all is well. I can not tell you how good I felt when I cut my hair in honor of Luke. It was something I could do to let you all know how much I care and keep the positive energy flowing to Luke.
This will also make someone very happy who is going through Chemo. They can walk around proudly with a beautiful wig made of real human hair.
Love to all
Tina
9-3-08
Hi All,
Luke is doing well. Today we had his orientation for kindergarten and tomorrow is his first day. Jeanine finally gets 2.5 hours of piece and quiet before she has to pick him back up. During the orientation, the school nurse made a presentation about a new student who has Cancer and is presently on Chemo. She mentioned how we all have to be careful if your child is sick and to notify her immediately. I saw everyone looking around for a bald sick kid. Even Luke was looking around. LOL I am grateful that they noticed our needs and informed the parents the importance of keeping their children healthy and notifying the nurse when needed.
Luke received a gift this week from a close family friend. Our friend Mark built Luke a bird house (Luke's Skate Shop) It looks great permanently affixed in our back yard. Luke will see the house in our yard for many years to come. Thanks Mark, It looks great!
I have a favor of ask of all of you. Your prayers and positive thoughts have gotten us through so much over the past 18 months. A good friend of ours and a huge supporter of our Luke and the Valerie Fund was recently diagnosed with cancer. I ask all of you to add our friend Bob to your prayer list. Bob, you are in our thoughts and prayers. Have a great night! thanks for everything. ED
Hi All,
Luke is doing well. Today we had his orientation for kindergarten and tomorrow is his first day. Jeanine finally gets 2.5 hours of piece and quiet before she has to pick him back up. During the orientation, the school nurse made a presentation about a new student who has Cancer and is presently on Chemo. She mentioned how we all have to be careful if your child is sick and to notify her immediately. I saw everyone looking around for a bald sick kid. Even Luke was looking around. LOL I am grateful that they noticed our needs and informed the parents the importance of keeping their children healthy and notifying the nurse when needed.
Luke received a gift this week from a close family friend. Our friend Mark built Luke a bird house (Luke's Skate Shop) It looks great permanently affixed in our back yard. Luke will see the house in our yard for many years to come. Thanks Mark, It looks great!
I have a favor of ask of all of you. Your prayers and positive thoughts have gotten us through so much over the past 18 months. A good friend of ours and a huge supporter of our Luke and the Valerie Fund was recently diagnosed with cancer. I ask all of you to add our friend Bob to your prayer list. Bob, you are in our thoughts and prayers. Have a great night! thanks for everything. ED
Pictures of Lukes new Bird House and first day of school. He seemed very happy! Hooray
9-11-08
Hi All,
Yesterday we were up at the Valerie for our monthly dose of Vincristine. Luke was so nervous getting his port accessed. The picture on the left is two seconds after he was accessed. boy what a relief! the picture on the right Luke was helping nurse Cathy administer his Chemo. Today he seemed real tired getting up for school, but made it up and out with no complaints.
Have a great day! ED
9-15-08
Hi All,
Luke is doing fine and seems to really be enjoying school. He is starting to get a little congested. Lets hope it goes away and doesn't land us in MMC. Jeanine put together a video of the first 18 months of Luke's treatment. You can access it on the first page. It came out really cool. Hopefully Luke can watch this for many years to come. We are becoming quite the computer-webpage experts. LOL
I am working on starting a mailing list so we can send out an e-mail every time we update the page. That would be nice, Ha! I will let you know when I figure it out.
We also have about 22 walkers registered for the Light the Night Walk. Thanks to all for registering to walk with us, as well as your donations. Also, thanks for all of your prayers and support. ED
September 20, 2008
Luke's steriod week finally came to an end. This round made him extremely restless and moody, he had a very difficult time sleeping at night. Luke is a trooper though, he did manage to get up and go to Kindergarten everyday. He loves school so much, he goes in and comes out everyday with a huge smile on his face. This Wednesday we do have a hospital visit for a CBC and exam.
Please see our website for Light the Night page for the Leukemia and Lymphoma Society. Our team goal is $1,000.00 and so far we are very close. So if you would like to donate even $5.00 will make a difference. LLS has come so far with there research. Hopefully one day Leukemia will be a word that won't exist anymore. If you'd like to donate click on the link on Luke's front page. We still have a few more weeks left and I really want to meet our goal. If you'd like to donate to one of Luke's walkers, you may click on there name to donate under. You can also sign up to walk with us. It's only a 1 mile walk and it's really an unforgetable evening.
Have a good weekend and enjoy the beautiful fall weather!!!
September 23, 2008
Just want to thank everyone that has contributed to Team Luke's fundraising page. We are very lucky to have so much support from everyone..Thank you, thank you, thank you!!!!
Luke's been feeling good the last few days. Tomorrow we will be up in the Valerie for CBC and checkup. Hope all goes well with his visit and we're in and out. Have a great night!
September 25, 2008
Yesterday's hospital visit went well for Luke. His CBC did indicate that his liver enzymes are above normal. This is the third CBC that showed the number was elevated. If it remains elevated they will cut his Chemo in half at his next visit. Another side effect from all his Chemo. This morning Luke could'nt get out of bed, I did keep him home from school. He is still sleeping soundly at 10:30am...I guess he really needed the rest...
Have a good day!!
September 26, 2008
For anyone that is trying to view Luke's video, go to Youtube.com and type in Luke Walz. Youtube took off the video the other day due to the copyright of the song we choose. We had to redo the video with another song. Hopefully we can get the link back on his web page...
I want to thank everyone again for your generous donations, it really means so much to us. I'm very proud to say Team Luke has about 30 walkers so far. Luke will be very proud to have such a big team behind him..
Luke is in school right now, hopefully not falling a sleep behind his desk. He was very tired again today!!! Jeanine
October 2nd 2008
Hi All,
All is well on the home front. This morning Luke woke up very excited because today is school pictures! It is funny, the little things that make him smile. He got dressed, brushed his teeth real good, and was happier than ever.
Yesterday we received a phone call from the school nurse letting us know that a student in Sarah's class is home with the Chicken Pox. The student's cousin is also in Luke's class. Chicken Pox can be very severe to children with Leukemia. We called the Valerie to asked them what we should do and we are waiting to hear back. I was thinking of taking Luke out of school and going far away to Vermont for the next several weeks, but Jeanine wont let me. Only Kidding! LOL
Oh well, it is just another coarse added to my plate at this lousy restaurant called STRESS we have been stuck at for the past 18 months.
Luke's supporters are really working hard to make Saturdays walk a special night for Luke. With a team of over 30 walkers and donations of almost $2,000, it should be a night to remember. Thanks to all.
Have a great day! Ed
October 6, 2008
Luke had a great weekend, he lead his team with such pride at the Light the Night event in Ocean Grove Saturday night. It was a wonderful night. Everyone carries a balloon with a little light in them. Red balloons for supporters, white balloons for patients/surviors. Some carry gold balloons to honor those that have past away from blood cancer. Let's just say I wish to god that Luke was'nt one carrying a white balloon, it makes me very angry. That's why for us supporting this event was so important, Thank god there is treatment to get rid of this Cancer. We had a great team of about 50 family and friends. Team Luke also raised close to $2,500.00 for the Leukemia and Lymphoma Society. Thank you to all that came out and walked with us and thank you for all the generous donations. It was also great seeing some families from the Valerie Fund and also the wonderful staff of the Valerie as well. Nurse Kelly came all the way from Washington to support all the patients from the Valerie, We miss seeing Kelly at the Hospital, it was a nice surprise seeing her at the walk. This Wednesday Luke will recieve Chemo (Vincristine) in his port and start the dreaded 5 days of (Dex) steriods. They will check to make sure his liver enzymes have'nt gone any higher. If they are higher we were told they will cut his Chemo in half..As always Tilly was a superstar all the kids could'nt wait to see her. Check back I will be posting some pictures of the walk...Once again thank you all for supporting us and all the thoughts and prayers for Luke. You all keep us going!!! Have a good day...
October 10, 2008
Luke had 100% dose of Vincristine on Wednesday, his Liver enzymes had dropped. He was very upset going into this appointment, he had Ed, myself and two nurses almost in tears. He is still having alot of issues having his port accessed. It was really sad seeing him so worried. After nurse Kathy had him accessed off he went to the play room with Tilly. It was a long visit due to the fact we had to wait for the blood results before the chemo..Well on a nice note Luke is extremely excited today we will be heading to Vermont for a few days..Have a great weekend..Love The Walz's
Thank you for all the donations to Team Luke that are still coming in!!
October 18, 2008
Wow, this month is half way over already. I can't believe the Holidays are just around the corner. We all had a very relaxing time in Vermont, the weather was beautiful and the foliage was an amazing site. This time of year in Vermont is my favorite. The kids really enjoyed themselves. Luke's been feeling well, aside from the annoying allergy symptoms he's been having. Coughing, sneezing and runny nose. Hopefully it won't turn into something worse. This Wednesday he has a well visit and CBC at the Valerie. Should be a quick and easy visit.
At our last Oncology visit Dr. Sheser-Perl recommended that Luke has a hearing test and Ear exam to discuss tubes put in his ears..So here we go again with another group of Doctor's. It just seems like he can't get a break. O yes and we will be seeing a speech therapist..Well that's all for now..Have a great weekend with this beautiful fall weather..I love it!!!!!
10-23-2008
Hi All,
All went well at Wednesday's visit at the Valerie. Luke's counts were good and we were in and out pretty quick. We were disturbed to hear that someone stole the WII and DVD videos from the Valerie Center. Last year around this time , we raised money to buy the WII and the past 12 months the kids have had so much fun playing the game. Nice Ha! How can someone steal from a children's Cancer Center. They even took the box.I have written several sentences which I erased, because Jeanine says I can't always post what I think. Lets just say I wish the thief has a great Christmas! LOL.
Today Luke, Jeanine and I went to the ear doctor for a hearing test. Poor luke didn't know what to expect. He has been through so much the past three years. Big toe reattached, Leukemia, testical biopsy, dental work and now his ears. We went into a small room and Luke had ear phones on. He was scared awaiting a needle. All went well and we were told that Luke's hearing is fine. He just needs a speech therapist. Great news because we were planning on the worst with tubes in his ears and another operation.
Last year Jeanine, her Mom and sister went to Toys R us and bought the toys for the Holiday party at the Valerie. The night they went to the store, I called the manager to see if there was any discount that can be passed along. I was told that all special offers had to be in writing from the corporate office which could take weeks. Last week I reached out to the head of Public Relations of Toys R us in Wayne NJ. I was told after explaining our story that no discounts are provided to anyone. I will be calling the office of the president tomorrow and possibly shopping at Target for toys the remainder of my life. I Hate Losing!!!!! LOL
Have a great night. ED
November 1, 2008
We had a great Halloween yesterday. Luke dressed as a boxer. Aunt Michele came early before school and gave Luke a bloody nose and a black eye. He looked awesome. When Ed drove him to school he was very nervous going into school with his costume on. He kept saying that eveyone was going to make fun of him in his costume. Then he saw all the other kids in there costumes, and he was fine. He did walk into school with his hands over his face. I can't believe how shy he can be sometimes. Eddie dressed as a rapper, and Sarah was a Hop Diva. They all had a great day. Luke's been feeling really well, thankfully no complaints from him. Wednesday he does have Pedi-daystay. That means a spinal tap pf methotrexate, Vincristine in his port and the start of another 5 days of steriods. Please keep Luke in your prayers this week. Having him sedated again, drives Ed and I crazy...Jeanine
November 7, 2008
Luke's spinal tap went well on Wednesday. He was once again loaded up on Chemo. Last night he was getting the look of Chemo overload (pale skin, red rings around his eyes). Not a very good look. His liver enzymes are high again so they will keep a close check on his next CBC. Other then that he is doing as well as he can be doing.
Last night Luke lost his first baby tooth, he was very excited because he managed to pull it out himself. I was a little concerned with the lose tooth, but the Dr said he's not to young..I can't remember how young Eddie and Sarah were when they started loosing there teeth. Tonight we are off to the Hope For Children Foundation event at the Ocean Place, we're looking forward to a great night!!! Have a nice weekend everyone
