7-18-07
After many hours of messing with the webpage, I finally came up with a solution that would allow us to put pictures back up. A new page!
Luke is doing fine and everything went well this morning. He amazes me more and more each day. He was hit with three different types of Chemo in his spine and port, and was running around the hospital just after waking up. His spirits are great and he knows what he has to do to get better.The next eight weeks are going to be tough, but we plan on going at it day by day and if Luke handles it like the first four months, we will be in done with this cycle in no time.
Tonight we have the Valerie Fund Picnic in Seabright. They are expecting over 100 people and we should have a great time. They are going to have a band and many different activities for all the kids to do. I will update tomorrow with pictures from tonight. (now that I can) Have a great night. ED
July 19, 2007
Last night we all had a great time at the Valerie Fund picnic. Due to bad weather, the party was in the WatersEdge Beach club. Tim McCloones band played (the Holiday Express) and they were so good. Sarah went on stage and sang (she's so shy)the first song of the night. Tim asked the group of about 120 people, who would like to start the party off and Sarah was the only one to raise her hand. Luke's nurses got a kick out of him dancing and singing, they could'nt believe him. They said that the next time he has his sad face on, they are just going to turn on the music and start dancing.
The party was great, they had a magician, and all sorts of games and prizes. It was amazing watching all the patients run and jump around like kids and forget about the battle that each one of them are fighting. The staff of the Valerie are such amazing people. The love of what they do shows when they see the children and the children light up when they see them. Yesterday while in daystay, Luke was freaking out when the nurse wanted to access his port. He wanted Nurse Cathy (from the Valerie) to do it. Below is a picture of Luke dancing with Nurse Cathy and Nurse Kelly. They really are amazing people and I couldn't imagine going through this without them. Have a great night! ED
July 20, 2007
Things have been pretty OK around here, although Luke has had a few bouts of vomiting, and last night I heard two of Luke's famous words at about 3:00am, "I HUNGARY". Well we know what that means, the steroids are kicking in. Let's hope it's not so bad this time around. Luke went to the barber yesterday with his big brother and they both decided to get their heads shaved. They both look so cute. This will make it easy when the chemo does its job on the rest of his hair. Have a great night!!! ED
July 22, 2007
Well we are down 5 days of steriods so far with 16 to go. Luke's hunger is going strong, it's like someone programs him to say "I hungary". We are trying to keep him active but he is slowing down a bit and his counts might be dropping. He has also been very tired for the past two days. Tomorrow we have to be in MMC for peg shots, that's the chemo that goes into his thigh muscles. Wednesday we are day-stay again which is a repeat of last Wednesday, spinal tap, doxorubicin, and Vincristine injected into his port. We cant wait for the next five weeks to be over. I can tell that it is starting to get to my little man. Have a great night and I will update you tomorrow. ED
July 23, 2007
Today went well. Luke had his final and last leg shots (hurray!!). He was so nervous this morning in the hospital, as soon as we get there he runs to the bathroom to throw up. We are pleased with his half a pound weight gain, although it's only been 6 days. As I write this he is already on his fourth meal of the day. He's having big cravings for McDonald's french fries, although it makes me feel better to get them without salt. Well have a good night!!! Jeanine
July 24, 2007
Today has not been a good day. Luke is in rare form, wanting to eat all day. One minute he is fine then the next crying for no reason. He has been so demanding, you can't look at him, or do anything right for him. He is now starting with knee pain, that's from the Vincristine he had on Wednesday, I think it's time for some tylenol w/codeine. Tomorrow is more Vincristine, so I think this time around the knee pain will be much worse then last. Luke is already getting nervous about tomorrows hospital visit, he never likes having his port accessed. I just can't wait for all this to be OVER!!! I hope the rest of our night gets better then today....Have a good night!!
7-25-07
Hello All.
Well I can honestly say that the past 24 hours sucked. It started with Luke waking at around 11pm with leg pain. I brought him down stairs to lay with me on the couch and we stayed there all night. All he wanted to do was lay on me and have me rub his legs. After picking up about three hours sleep, we proceeded to the Valerie for our chemo. The parking lot was packed and they were very busy today. Today they have a meeting for parents at 10 am that Jeanine and I never attend. It just seems to much to take in at this time, but perhaps in time, it can benefit us. There was also a film crew there filming the daily procedures. Since all the other parents were in the meeting, we had a camera in our face all morning. The film will be used to explain the Valerie and I suppose is a good thing, I just wasn’t in the mood today.
When Dr Luty checked Luke, she noticed that his liver was enlarged and had us go down for an ultrasound. We also had blood work and the result was that his liver enzymes were high. We have to go back on Monday for more tests and we are hoping that everything is back to normal. If things are worse than they were today, they may have to delay Chemo. We need things to go back to normal. Luke is currently very tired and requesting my leg massage as I type. Have a great night and Thank you for your prayers. ED
FYI: His swollen liver is a side effect from the chemo.
July 26, 2007
Luke had an OK night, he had no leg pain which was good. He did wake very early around 7:00am in a very demanding irratated mood, it's very sad how this disgusting steriod changes him. He was shouting out orders I want wonton soup, I want chips, I want eggs, I want to go to Target, I want to go to Toys R Us, I want, I want, I want. He has me running circles for him, needless to say by 8:00am he got a valium. Thank goodness for that medicine, he sat and colored for 2 hours and never asked for one thing, we finally had some peace in the house. He is slowing down quite a bit, so much for trying to keep him active. I can't even get him to go outside by the pool. He is right now at his grandmother Rose's house eating what else but chinese food (salt) he asks for rice because it's really the soy sauce he wants, just like eggs it's really the ketchup he wants, anything with salt. We are trying to limit his salt intake but it's so hard. Well, we hope to have some what of a quiet night. Have a good night!!
July 27,2007
As you can see Luke has gained about 5lbs already. We hope he stays under the 10lb mark this time around. We still have 12 days to go. The picture above I thought was very funny, as bad as he felt this morning a trip to Toys R Us was what he wanted. Above he is playing with his new power tools, although he wanted to wear one power ranger glove. Power Ranger home improvement guy. For now he has been sleeping soundly since 7:00pm, the medicine is really slowing him down. Unfortunatly, we think the next 4 weeks will get worse before it gets better. Have a good weekend!!
July 30, 2007
Today has been a really bad day. We went up to MMC this morning. Dr. Luty said Luke's liver is still enlarged, although his liver enzymes have dropped a little. Dr. Luty also told us Luke has developed Thrush in his mouth, which is starting to become painfull for him. Dr. Luty gave him oral mouth wash that he has to do four times a day (just another thing for Luke to have to take). He has been battling leg pain all day along with a very bad headache. Needless to say he has spent the whole day on the couch, with me at his side trying to make him comfortable. His weight gain since Wednesday has been almost 3 lbs, this is making him very uncomfortable as well. Luke's white blood count and hemoglobin is very low, Dr.Luty said by next week he will most likely need a blood transfusion. This means Luke is very prone to infection. We will be back up at MMC on Wednesday for chemo, If Luke is feeling this bad now, I can't imagine what this weekend will be like. Have a good night!! Jeanine
8-01-07
Hello All,
Well the past few days we have been having web page problems again. We are finally back and running. The past few days have also real tough. I am actually in the hospital for the night with Luke (hopefully just tonight). We were admitted this afternoon because Luke was running a slight fever and his blood pressure is high. He has also gained about 5 pounds in the past three days, so they are giving him a diuretic to get his belly down and an antibiotic to prevent infection. He has been really grumpy and at first liked the idea of staying the night, now he just wants to go home. We can’t wait until Tuesday when we are done with the steroids again. They just make him crawl out of his skin and it always seems that every time we go on a long cycle, we are back in for an overnight stay. Below are some pictures of Luke in the hospital. He likes to take his own blood! I am now typing and Luke continues to moan “I WANT TO GO HOME”.
Have a great night! PS I can’t wait to sleep in my chair.
8-02-07
Hi all,
Well, today was a little longer than expected. Last night we made it through the night without spiking a fever and I thought that we were going to wake up, get our Chemo and go home. Dr Luty wants him to stay one more night just to make sure his fever doesn’t come back. Dr. knows best!! Tonight Jeanine drew the short straw, so I go home after dinner and she gets to sleep in the comfortable vinyl chair. NOT!!!
Luke had a pretty good day. He seems to be tired and has taken several naps throughout the day, I’m sure the rest is good for him. His belly and blood pressure has gone down a little and Dr. Luty increased diuretic dosage today so he should be up to the bathroom a little more tonight than last night. He just finished getting his Chemo while lying on my stomach and he is currently watching what else but THE POWER RANGERS!
Have a great night. ED
8-03-07
Home at last, home at last, at 5:30pm we are finally home at last. The past two days have been tough. Luke started last night wanting to go home. He missed Coco and his bed. He woke up wanting the same thing. He also gained about two pounds overnight. When I arrived at the hospital this morning “as crazy as it sounds” he was much chubbier than when I left him at 10pm. I thought right away that we were spending another night.
We also had a boy brought in across the hall from us around 10pm, who passed away this morning. It was very sad to see.
Luke is very happy to be home, and personally it’s very nice to be home. You appreciate the comfort of your home when it’s taken from you.
Next week we have to go in for blood work and the following week we are scheduled for another overnight visit. The Chemo that Luke will get requires that he is hydrated, so he will be put on an IV before receiving it. It is very scary to me that we are receiving a lot of new drugs that he has not had before. The good thing is that come September if all goes well, it should get easier. If I have learned anything from this week, it is appreciate and value what you have.
Have a great night! Ed
8-05-07
Hi All,
Well today was an OK day for Luke considering he is so uncomfortable. The poor little guy has once again gained so much weight and can’t seem to relax. Last night he woke up several times looking for food and Jeanine catered to his requests. At about 4am he wanted to lay with me on the couch. On the couch he still couldn’t seem to fall asleep.
This morning Aunt Beth took Luke home for a few hours. Luke loves to get out and with his counts falling, we are very hesitant to bring him anywhere. He liked the visit and was happy to get out of the house. Today we had a christening and we had plans for him to stay home with Grandma, but just before we were ready to leave, he insisted on coming with us. The party was outside so Luke came with us and was a pretty good sport. Hopefully he is tired and gets some sleep tonight. He is now sitting at the kitchen table coloring in his Power Ranger coloring book. Have a great night! Ed
P.S. Tuesday is his last steriod pill...We can't wait for Luke to start feeling comfortable again. It's awful having to see him this way.
8-6-07
Well Luke is bigger then ever, I think his weight gain is up 13lbs. It's mostly in his stomach and face. Today he had a hard time getting up our front step which is only about 2ft. We hate seeing him this way. Tomorrow is his last pill, but it will take some time for his weight to go down. For the next 2 and a half years he will do 5 days a month of this steriod, but that is nothing compared to 21 days. His eating the last three days has been out of control, along with him not knowing what he wants. All day today he went from one thing to another, I'm tired of being bossed around all day. It's getting real old. We go to MMC on Wednesday for blood work, I'm sure all his counts are getting very low, his face is starting to look a little grayish. Luke will be medicine free for the next 7 days after tomorrow. They give him a rest before his over night stay next week, where they will then give him a spinal tap of Methotrexate, Cytarabine and Cyclophosphamide in his port. These two chemos will be new to him, and he has to be really hydrated so they admit him overnight. Let's hope he dose'nt get sick from all this. Well we will cross that bridge when it comes. For now I hope he just sleeps tonight better then the last 20 nights. Have a good night.
Hi all,
I thought I would share with you. Luke after his 9:30pm cheese omelet. The reason for the sad face? He is still hungry!
Have a great night, ED
August 7, 2007
Well all I have to say is today s#*ked. Luke is bigger then ever. He is having a hard time breathing, sitting, standing, walking and even laying down. Ed just got off the phone with Dr. Luty, Luke was having very bad back pain tonight. Dr. Luty recommended some codeine, and if the pain continued throughout the night she said to call back. Hopefully the codeine will do its job. I have a feeling it will be a long night....
August 8, 2007
Last night was one of the worst. Luke cried in pain with his back for most of the night, we are hoping its muscle soreness from carrying around his enormous belly. Dr. Luty had him give a urine sample today, hopefully it's nothing to do with his kidneys. Dr. Luty said his liver is still very enlarged and that it should start going back down to it's normal size now that he is finished with steroids.
We met the new oncologist who is replacing Dr.Luty today, she seems very nice, although we will miss Dr.Luty. Hopefully Luke will start feeling better by next week. We've noticed the last few days he has had extreme hair loss, it's starting to fall out so fast. Nurse Kathy told us it will start growing back once he begins maintenance, which will be mid September. Next week is the busiest week for chemotherapy; Luke will receive it four days out of that week. What these children have to go through to cure Leukemia is such hard work and exhausting to their bodies. Luke amazes us with how he handles things. He does what he has to do to get the job done. Thanks for all your support and prayers...The Walz Family
8-9-07
Hi All,
Well although today has been a real long day, Luke actually smiled for the first time tonight in 21 days. He was playing war with cards and he put a fake card in the deck. He thought it was the funniest thing in the world. It is amazing how as soon as he stops the steroids, he feels better.
Today we woke up around 3:30am with Luke feeling terrible. His head was pounding and he actually wanted to go to the hospital. I rubbed his head for about an hour before calling Dr. Luty. She called me right back and told me to give him some Codeine for the pain. She also told me to bring him in around 8:30.
At 8:30 we were in the hospital and Luke’s blood pressure was very high. This is what was causing the headache. Nurse Cathy took us right in and had us as comfortable as possible in the movie room. (We love Nurse Cathy). After about an hour, his blood pressure had dropped and we were able to go home, or work in my case. We were told to keep the salt intake as low as possible.
Today Luke had Chad go to the party store to get his Halloween costume tonight before they ran out. Isn’t Halloween in October? Guess what Luke is going to be? Whatever!
It is now 9pm and we have a Red Power Ranger Eddie and Sarah all getting ready for bed. It’s good to see Luke feeling more like himself. Hopefully the worst is past us. Have a great night and thanks for the prayers. Ed
August 10, 2007
Well finally a morning with Luke waking up in a good mood. The last 21 days we all have been blown at of our beds by him crying and screaming. This morning was different and so nice. It was the normal to us. I'm guessing this is a good sign that the steriods are wearing off. I thought I would just share this little bit of good news. The things that make me so happy these days. Have a good day!!!
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August 11, 2007
Things around here have been so much better. Luke has been laughing for two days now, which is so nice to hear. Last night he slept over Grandma Roses house, that was his first sleep over in a very long time. She did say he only woke to use the bathroom, how come for no food? Whats up with that!! Hopefully tonight he will sleep good for us like he did for Grandma. Today, both Grandmas and Aunt Marybeth attended a party/silent auction at a very nice couples home in Monroe NJ who had Luke their honeree with the proceeds going to the Valerie Fund. Can't wait to hear all about it when they all get home. Have a great night!!!
8-12-07
Hi All. Happy Sunday.
Well we had a little bit of a crazy weekend, but all and all Luke is feeling much better and seems to be getting his little personality back. Over the past two days Luke has been laughing and seems to be in a great mood. As a matter of fact, I don’t think he was sad at all today. Today I also shaved the rest of Luke’s hair which wasn’t very much. His hair has been falling out in clumps over the past several days and was starting to look funny so today was the day I fixed it. His brother Eddie also took to the razor. He is such a good brother. It is going to take a little getting used to, but hopefully in September it will start growing back. He doesn’t seem to mind. Have a great night Ed
August 14, 2007
Luke continues to do well. We went for blood work this morning, and to check on his blood pressure which was very good. Nurse Kelly just called and said his bloodwork is good to go for tomorrow's chemo. This week and next is the hardest for treatment. We have to be in day-stay for 7:30am, he will have a spinal tap. They will move Luke over to the Pediatric floor to hydrate him for several hours then give him his chemo which takes an hour to go in. They then have to hydrate him again. If it's to late we will stay overnight because he gets chemo again the next morning at 9:00am.
He will receive chemo in his port 8 times within the next two weeks , plus a new oral chemo that causes fevers. Let's hope he won't get sick from all this. We are still trying to get use to him having no hair, he thinks he has a new haircut (but with no hair). Please keep Lukie in your prayers tonight. Hopefully tomorrow will go as smooth as possible. Have a good night!!!
8-15-07
Hi all,
Well today Luke handled everything like a champ. We were originally told that we could be spending the night do to the fact that Luke needed to be hydrated, but by 5pm he was ready to go. He truly amazes me. I don’t know how he handles it, but he refuses for this to slow him down. He just keeps going and going.
Today he received three different types of chemo. He had a spinal tap and two pushes in his port. His port remains accessed for tomorrow’s round and Luke is real proud of that. Luke couldn’t wait to show his big brothers.
Tomorrow he gets an IV push of Ara-c . He also receives a new oral chemo tonight before bed. The common side effect may be fever, which can land us back at MMC. We also have to be back in Friday and Saturday for more Ara-c. For now Luke is looking for his Nintendo DS and seems happy as can be.
Have a great night and thanks for the prayers. There working!!!! ED
August 17, 2007
Luke continues to do well. He took his chemo yesterday like a champ. This morning we have to be back up for more chemo (Cytarabine) as well as tomorrow morning. He will have off Sunday and Monday, which then it's back up on Tues, Wed, Thur, and Fri for chemo. They say by next week he will be completely wiped out, needing some blood transfusions. Last night he did wake with some nausea, I gave him Zofran, which really helps. They told us to give it to him every 8 hours around the clock to subside the nausea.It breaks our heart seeing him sick like that, he just dose'nt understand why he feels the way he feels. But we know it will get worse before better, they say it will take 2-3 weeks for him to recover from the last two weeks that he has been through. Let's hope the Zofran does it's job well for him!!! Have a good day!!!
August 18, 2007
Today has been a good day for all of us. We went to MMC this morning and a very nice nurse named Bonnie gave Luke his chemo. The nurses on the pediatric floor are not allowed to push Luke's chemo into his port, so they have to give it to him in a drip which only took about 15 minutes to go in. The pediatric floor was so slow, we actually got to pick which room we wanted to go into. Usually the pedi floor is packed with sick children, this was quite unusual.
Today we went to Uncle Gary and Aunt Stacie's house. He had his port deaccessed this morning and was able to enjoy the pool with his cousins. He hates that the most because the tape that holds the tube in is very painful when it is removed. Tonight he is spending the night with his cousin Cora at Grandma Rose's house. It's so nice seeing him smiling, laughing and wanting to go places. We will take that when ever we can get it. We have learned a lot in the Walz household over the last 5 months. Take life one day at a time!!!! Have a good night!!!
August 22, 2007
Luke continues to do well. He has two more days of IV pushes (Cytarabine) and so far he has had very little nausea. Yesterday, Luke did get sick up in the hospital. He gets very nervous before they have to access his port. They also had a very hard time accessing him, so he was more upset than usual.
The massive amounts of chemo are causing his counts to drop and he is starting to get a little irritable. We were told that he might have to have a blood transfusion on Friday to get him through the weekend. His weight is now dropping as well,. He seems to have lost his appetite and what was last months obsession (FOOD) seems to be the last thing on his mind. It is crazy how things change from month to month. We were also informed that if all goes well, Luke 's last day of chemo will be May 24th, 2010. A month to the day after I turn 40. What an awesome present that will be. I am probably the only 37 year old who can't wait to turn 40 and your all invited to my party.
Tomorrow we will back up in MMC for chemo and blood work. Lets hope that my little bull keeps up the good work and makes it through the next couple of weeks without complications. Have a great night! Ed
August 23, 2007
Today went well for Luke. We had the company of Eddie and Sarah with us, which he always enjoys. Tomorrow is his last day of cytarabine, he will also be getting a unit of blood. The transfusion takes about 4 hours so it will be another long day at the Valerie Fund. Luke has a few more days of oral chemo, if all goes well come Monday he could be medicine free for about 2 weeks. We are looking so forward to that. Have a great night!!!
8-25-07 Happy Birthday Sarah!!!!!!!
Hi All,
Well our Luke has been doing fine. Yesterday he received blood which took about 4 hours on the IV. Prior to receiving the transfusion, Luke’s counts were real low. We have to go to the Valerie this week so they can monitor his counts and it is quite possible he will be receiving another transfusion this coming week. The intense Chemo he received over the past two weeks will continue to drop his counts for the next two weeks and God willing, this will be the worst round of Chemo he will receive moving forward. I must say my little bull handled like a champ!
Luke has been real happy the past two days. It is great seeing him happy, smiling and running around again. He is now asking me to take him in the pool and just finished playing spill the beans with Eddie and cousin Cora. Thanks for your prayers!!
ED
All this blood is making me 
tired!!! Thank god Mom brought my favorite blanket.
tired!!! Thank god Mom brought my favorite blanket.8-27-07
Hi All,
Luke had an OK night last night. He woke up several times throughout the night crying and he wasn’t happy until he slept between Mom and Dad. He wound up finding a comfortable spot and slept until about 9am. Today he traveled with Grandma Rose (Wose) to see Nonnie in Manahawkin with his sister Sarah. Nonnie was so surprised to see her great grandchildren. Today Luke also received a package from his friend Audra who works for the Orlando Magic. Thank you so much for the gifts, he loves them. We are scheduled to visit the Valerie on Wednesday for more blood work and possibly another transfusion. Tomorrow is his last day of Chemo until September 12th. On the 12th, as long as his counts are good, we will start Maintenance which will consist of five days of steroids, Vincristine once a month, Methotrexate once a week, and 6mp (oral chemo) daily. He also will get a spinal once every 12 weeks.This will continue for the next two and a half years.
For now, he is calling for me to go play football outside before I leave for a meeting on November 2nd. Have a great night!!!
Thanks for the prayers. ED
August 28, 2007
Well less then three hours after Ed's update yesterday, Luke was admitted in to the hospital with 103.5 fever. This fever came out of no where. At 7:00pm last night he was having fun on his big wheel, two hours later he was in a hospital bed. He was a little dehydrated so they put him on IV fluids. We are also waiting for his blood culture to come back to let us know if he has some kind of infection. Let's hope the fever was a side effect from the Cytarabine, which he has had for the last two weeks. Right now he is getting antibiotics every 8 hours through his port. Luke is very content right now watching TV. To add to the crazyness I have to pick up Sarah's puppy (Maltipoo) from Newark airport today at 3:30. That's right a PUPPY!!!!!!!!!!
8-29-07
Hi All,
Well everything is going as good as planned. Luke’s fever subsided and blood culture is still negative. He seems to be feeling well and just got finished in the play room. We are now playing with the Lincoln Logs building a log cabin. Hopefully his counts come back good and we can go home today. The new puppy is waiting home for his new best friend. I can’t wait to see the two play together.
Luke wants to come home, but is getting nervous because he knows that his port has to be de-accessed. He actually just told me that maybe we can stay another day.
When we first came in on Monday, the nurse was " well lets just say " uncomfortable accessing his port. I almost just did it myself. She was unsuccessful on the first try and had another nurse do it the second time. Poor Luke kept screaming is it done yet over and over again, while the nurse practically read the directions on the damn thing. I can assure you that that will never happen again, but Luke won’t forget it. Thanks for your prayers. Have a great day!!! ED
August 29, 2007
Well another night here in the hospital. Dr. Luty just left and told me Luke's counts had'nt gone up at all since yesterday. Well except that his platlets did drop a little, they were 156 on Friday today they were down to 45, when they get in the 20's he will need to be transfused, unless they start going up. Grandma Rose spent the night here with Luke last night, tonight I will be here fighting for a spot in the bed with him. Have a good night. Jeanine
August 30, 2007
It always feel so good to be home, Although Luke would have stayed in order not to have his port de-accessed. After four trips to the bathroom, two were to power puke and the other two " well we won't go there" I finally decided he needed to be held down, or we would still be there. He gets so nervous when it comes to his port, I think the tape is what hurts him the most. His counts went up a little, his platlets are still dropping they were at 43 today, normal is 400, lets hope they rise rather then getting lower or he could need a transfusion over the weekend. Now we have to watch for any bleeding, bruising or headache and of course fever.
Ed and myself truly believe Luke will have the best out come when all this is over, but then reality hits. I met a mom in the hospital last night her son relapsed in January. Her son went through three years of treatment at the age of 6 years old to find out at his 8th month checkup he had relapsed. His treatment this time around is so extremely intense. I just feel so bad for all these children that have to go through all this. These kids should be enjoying their summer vacation not lying in hospital beds. Besides Luke there were three other kids from the Valerie Fund in the hospital. Lets just say Dr. Luty seemed very busy. Today Eddie and Sarah attended a sibling party at the Valerie Fund and they had a great time. For now, we hope to have a quiet Labor Day weekend with no hospital visits. Keep your fingers crossed. Have a great night!!! Jeanine
September 2, 2007
Luke continues to do well. He has'nt complained of much this weekend. Luke still has no appetite, and really won't drink very much. He still has about 10lbs on him from the steriods, which surprises me with how little he is eating and how active he is on his bigwheel. Nothing seems to be slowing him down these days, he just keeps going and going.
The kids are having so much fun with the new puppy, we named her Abby, she is such a baby doll. Coco is also adjusting to her new friend. I hope they become best of friends. We are due at the hospital on Tuesday for bloodwork, I am curious to see where his counts are at, considering how low they were last week. He has been looking very pale the last few days, although it could be he has lost his great coloring from LBI. We will see on Tuesday. We could not have asked for a better weekend, I am glad to be home and enjoying the weather. Have a great night!!!!!
8-4-07
Hi All,
Luke has had a pretty good past couple days. He seems to be feeling well and not having a problem with keeping up with his busy lifestyle. Today Luke went in to the Valerie for a checkup and finger stick. His counts are starting to go up and for the most part everything went well. The nurse was a little concerned that Luke has been having diarrhea for the past week. They may want to check him for C-Diff which is a form of colitis if things don’t get better by Thursday. This would not be a good thing, considering his eating habits have never been good.
With his eating being terrible and his counts much lower than the norm, you would think that he would slow down a little, but he continues to do what he wants. He will not allow this to effect what he loves to do. He continues to amaze me and I get tired just watching him. Last night we watched Little Man on cable. Brother Eddie was sleeping in 45 minutes and Luke walked up to bed after the movie was over. He laughed the whole movie. It was a great way for me to finish my holiday weekend. Have a great night. ED
Sister Sarah with our new puppy Abby
September 5, 2007
Ahoy Mate!!!!!
Yippee!!!!, tomorrow is the first day of school for Eddie and Sarah, although for me, I will be home training a puppy by myself. Luke continues to feel well. His stomach problems seem to have subsided. We went out to the Price Club today and we bought his second Halloween costume Captain Jack Sparrow. He told me he would save the power ranger one for next year. Luke is scheduled to start mainentance on September 13th. He will be in pedi-daystay on that day for a spinal tap of methotrexate and vincristine. He will also start 5 days of steriods along with his oral chemo. This oral chemo has made him throw up a lot in the past. I hope that maybe it will be different this time around. Luke will have to endure 10 more spinal taps before his treatment is finished. That is 10 more times being put to sleep with Anesthesia. That bothers us so much. Well, we thought you would enjoy this picture, the head piece fits him perfect because of the fact that he is bald. Have a great night!!
9-06-07
Hi All,
Well today was a very special day for the Walz family. This evening we met at MMC with Aunt Beth, Eric and Karen Hinds and a lot of other special people who are helping with the event in November.
First of all, I would like to thank everyone who has helped in raising money in our son’s name. It is an Honor to think that I am friends with such a special group of people. As of today, less than 6 months since Luke has been diagnosed, He has raised about $30,000 for MMC. This is amazing and thank you all for what you do. You’re the best!
Earlier today, Aunt Beth and the Hind's met with several friends from MMC to determine what the proceeds would best benefit our children and would make a difference for all involved in the fund raiser. They decided to use the proceeds from the event to develop additional space for The Valerie at MMC.
In the past five months I have met many families who are going through exactly what we are and unfortunately have recently met many new families as well. (Seems to be getting much busier). The Valerie has provided us with quality care, in a children friendly environment, from loving people, which is critical in these children winning the battles they face. This new space will be constructed so children can enjoy the time they spend while receiving treatment, a movie room, exercise equipment, and a video game room. This is going to be great! I will be updating the giving back page on the site, to include pictures of the Valerie as well as the new space we will be developing.
The event is less than two months away and we are getting down to the deadline. Please e-mail me if you would like to help or attend the event.
Special thanks to Mr. Campbell and the Tombros Foundation for your most generous donation. Can’t wait for everyone to see our finished project at MMC and the happiness it brings to our children of The Valerie Fund.
Have a great night !!! Ed
9-08-07
Hi All,
Luke is feeling well and enjoying his weekend. Today he spent some time in the pool. When he wasn't on the steps, he was chasing Eddie, Sarah and a few of their friends around with his water gun. He seems to look much better now that his counts are coming up. Tonight he is spending the night at Aunt Michele’s and Uncle Glen's. Tonight Jeanine and I are kid less and heading to a friends house on the river for a barbecue. Gotta go, this time is valuable.
Have a great night!!! Ed
Luke enjoying his website at Grandma Wose's. Thank you for thoughts and Prayers. Luke likes to hear who is writing in.
September 11, 2007
I am happy to say Luke is doing great. He has been medicine free for 2 weeks now and I'm glad he is feeling like himself again. I'm not happy to say come Thursday it all starts over again. We have pedi day-stay for a spinal, and Luke also starts his oral chemo again. That has made him sick in the past. Let's hope this time it's different for him. Please keep Luke in your prayers. We always hate when they put him to sleep. After Thursday 9 more spinal taps to go. WE CAN"T WAIT!!!!! Have a good night!!!
9-13-07
Hi All,
Well today we started Maintenance, HIP HIP HOORAY!!!!.. It is supposed to get easier moving forward for the remainder of Luke’s treatment. Today we started our day leaving for the hospital at 7am. We had to go to the lab for a finger stick to make sure Luke's counts were good prior of the start of Chemo. Luke was very upset and of coarse Daddy had to do the finger stick. Luke was running to the bathroom and throwing up with nerves before I could even stick him. He finally calmed down and I was able to fill the tube.
We then went up to day stay to wait until Luke’s counts came back. About an hour later, we received a spinal tap and Vincristine in Luke’s port. By 11 am Luke was waking up and we were headed home. My boy is such a trooper and he will not let this slow him down.
Clifford the Big Read Dog was visiting MMC and gave Luke a little red dog as we were leaving. At first, Luke wanted nothing to do with the big red dog, but in time, Luke was high fiving him and having fun. Luke now feels well and you would never think he went through what he did today. On the way home from MMC, he was singing Fergie and knows all the words. He puts a smile on my face every day.
Have a great night and thank you for your prayers. ED
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September 15, 2007
Today has been a good day for us all. Luke so far has had no complaints. I do see a little moodiness come out in him every so often, could it be the steriods trying to break through? I will take 5 days of steriods over 3 weeks anytime. Eddie had a great soccer game today, scoring 2 goals to win the the game. Have a great day!!!!
September 17, 2007
Today Luke had bouts of nausea come and go . One minute he is sweating the next he is ice cold. Tonight was his last night of steriods. It ended just in time, I can see the mood swings kicking in. Tonight we went to dinner at Brothers Pizza for Aunt Marybeth's birthday. Luke had to lay down before his dinner arrived because he wasn't feeling well. His oral chemo really effects him more then the IV chemo. I'm sure all this medicine will, with out a doubt do it's job and knock his counts way down by the end of next week. We are on an every two week schedule with the oncologist. Life has gotten a little easier in our house with less visits to the hospital. We just have to keep it that way and keep him healthy.
Luke was very funny today. I took him for shoes for Cousin Matt's wedding that he is in, and let me tell you he tryed on 10 pairs until he found the right ones he liked. He was so particular, he also had to make sure he could run in them. He had me laughing so hard. People must think I'm nuts, the things that humor me these days. Have a good night!!
September 20, 2007
Luke is doing great. He is taking all his oral chemo like a champ. I will say that I cringe everytime I give him them, because he chews them and from the look on his face they are not tasting to yummy. Thank god he takes his pills so good, I could'nt imagine fighting him to take his pills on a daily basis.
On October 13, 2007 we will be walking with Luke at the Light the Night event in Ocean Grove NJ. This event benefits the Leukemia and Lymphoma Society. I hear that it's just beautiful. Cancer survivors carry red balloons and supporters carry white balloons. A few children from the Valerie Fund were chosen this year to be honoree's at this event this year. We are looking forward to it. Have a good night!!
For anyone interested in visiting the site it's www.lightthenight.org
Setember 21, 2007
Today is 6 months since Luke was diagnosed. Wow it's been a very long 6 months, but we made it through it. Hopefully the worst is behind him. Thank you all for your prayers. The Walz Family
September 25, 2007
Luke had a great weekend ! He rode his new bike we bought him on ebay last week. It's good seeing him get some much needed exercise. Also this weekend his hair started to grow back and it looks like it's growing back in very dark. Luke is still sleeping right now, he was up a lot last night with a stuffy nose. I hope he is not getting sick. We all leave on Friday for Ithaca New York. Luke is in my cousin's Matt and Karena's wedding. We are very excited for this weekend, so lets keep our fingers crossed that he won't come down with something. This weekend will be the first out of town trip for us since Luke was diagosned in March. It will be great to get away.
Tomorrow we go to the Valerie Fund for a checkup and bloodwork. I am curious to see where his counts are, considering he has been on so much oral chemo. Well ,we will see tomorrow. Have a good day!!
9-26-07
Hi All,
Well Luke is doing great. Today we visited the Valerie for a finger stick and a checkup.
We started with Luke Power Puking prior to the finger stick. Most people get sick from Chemo, but Luke gets sick of the thought of a finger stick. Go figure, He says it doesn’t even hurt. After returning from the bathroom, I proceeded to stick him, (for those of you who don’t know, Luke only allows me to take his blood) and we headed to the Valerie for our checkup.
We were very upset to hear that Dr. Luty will be leaving for her new job in Massachusetts on Friday. Dr. Luty was the Dr. who originally diagnosed Luke with Leukemia and has been with us every step of the way. It was very emotional for Jeanine and I to say goodbye. Six months ago we were in control of everything and to be brought in to a world where you have to trust another for your families well being, is a feeling know one should have to encounter. Dr Luty has been great to Luke and has provided great care for our son. She will be missed.
Luke’s hair is growing in quick. Every morning it seems to be a little longer. His energy level is a 9 out of 10 and he is looking forward to being the ring bearer at his Great Cousin’s Wedding this Saturday. We have him practice his isle walk. He is so cute.
Have a great night!!!! Thanks for your prayers ( they are working) ED
9-30-07
Hello All,
Our little “Ring bailer” had a wonderful weekend. We started the weekend arriving in NY just in time for the rehearsal of cousin Matt’s wedding. Luke did a great job carrying his pillow. He seemed real excited for the big day on Saturday. Friday night we went to a party in a park for dinner and all of the cousins had a great time playing soccer and skateboarding. Luke looked great and had so much fun.
The wedding ceremony was outside and you couldn’t ask for a better day. During the beginning of the ceremony, Jeanine was up with Luke awaiting his walk, while I waited anxiously with the video camera under the gazebo. And than it happened, the door opened and Madison the flower girl came out with no Luke. He was a little nervous with all of the people and needed a little assistance from Mommy. So Jeanine and Luke walked together to the Gazebo, while the audience clapped and called out “Luke”. He was very embarrassed at first, but carried a smile for the rest of the night. He had a great weekend and it was so nice to be away. It is great to see him feeling better and acting like himself. Have a great night! Ed
10-04-07
Hi All,
Everything has been great at the Walz home. Luke is losing weight and running around like a normal four year old. He also has a new friend, BOCCE a new Labradoodle. I am seriously going to get thicker rubber gloves for Jeanine to use while mixing the Chemo. Two years ago she didn’t want a dog and now we have three dogs, although Abby is more like a Guinea pig.
They say not to sweat the small stuff and I guess with what we have been through the past six months, if Bocce will bring happiness to Luke and the rest of the kids, then what the heck, another dog it is. She is the coolest looking dog, has a great temperament and seems great with the kids and other dogs.
Wednesday we head back to the Valerie for our monthly Chemo. Until then we will enjoy happy, always smiling, little Luke.
Have a great night! Let’s go Yanks!!!!! ED
Luke at the Wedding
Luke with Bocce
October 7, 2007
Things have been pretty normal around here. Today we walked in Avon for the Juvenile Diabetes Foundation for little Colin. It sure was hot, not your typical day in October. Hopefully one day they can find a cure for Diabtetes so Colin can live a nomal life. Luke had a good time with all his cousins. Next Saturday we are walking in Ocean Grove for the Leukemia and Lymphoma Society. It's called Light the Night and I hear it's pretty amazing. One of their heros this year is a 10 year old patient of the Valerie Fund, he was diagonsed at age 6 with ALL, he did three years of chemo, and found out 8 months after his treatment ended that he had relapsed. His treatment this time around is for 2 more years and it's very very intense. If only we could find an instant cure for Leukemia that would be great. Have a great night!!!
October 9, 2007
Luke had a good day today visiting with Aunt Michele for a little bit this afternoon. When I came home from work, Luke, Eddie, Chad and myself played football outside and had a great time. He has so much energy and is losing weight,growing hair and looking great. He doesn't slow down for a minute.
Tomorrow we head to MMC for Vincristine in his port and blood work. I am sure he will be real upset in the morning, but will be my little champ as always. Thanks for your prayers! Ed
October 10, 2007
Today went well. Luke had a hard time this morning knowing he had to have his port accessed. Nurse Kelly had to wait while he made 4 bathroom trips, 2 to throw up and the other 2 well you know what they were for. His nerves take over right away and trigger everything inside him. Luke had his Vincristine and bloodwork and then his port deaccessed. We also had the chance to run into Tilly who is the Valerie Fund's therapy dog, she is an English Bulldog and very sweet, Luke loves Tilly. Have a good night!!
October 11, 2007
Today Luke was grumpier then ever, it started at 4:00am and has continued until he just fell asleep, thanks to BJ tickling his back. Maybe the moodiness has to do with chemo yesterday and the 12 pills he had to take throughout today. He is also back on steriods. I have'nt seen him this irratated in a long time and nothing seems to be making him happy. grumpy, grumpy, grumpy, grumpy, grumpy and more grumpy. Have a great night.
October 13, 2007
Hi All,
Well tonight has been a pretty cool night. First of all, I noticed that Luke has over 15,000 viewers on his website. So many people thinking and praying for Luke and all the prayers are working. Tonight was also light the night. Light the night is a walk to raise money and support Leukemia and Lymphoma society. All of the survivors carried a white lit balloon and the supporters carried a red lit balloon. The walk took place in Ocean Grove on the board walk. It was so cool to see all of the balloons glowing down the boardwalk and emotional to see the white balloons carried by young and old.
Childhood cancer is the leading cause of death in children under the age of 15 and the Leukemia and Lymphoma Society are doing a great job in finding a cure for this terrible disease. Although the survival rate of childhood leukemia is much greater than years past, Luke is on a protocol which is experimental and is being adjusted with new patients monthly. It is very frustrating to know that something that we are doing to cure our son, will be adjusted with new patients to minimize the side effects in the future and Luke must continue with the menu of medication, that is on his now outdated protocol.
This year was a “test walk” and next year we plan on getting a team together to raise money for this great cause and support Luke and all of his friends at the Valerie. It was great to see Luke’s Nurses and caretakers all out to support their patients. They are all very special people. Have a great night! Go Giants!!!!! ED
October 15, 2007
For any of you that may notice, I am writing in red tonight, because Luke's moodiness has my blood pressure boiling. He is back to not knowing what makes him happy, which is very frustrating to us all. Right now he is watching Drake and Josh with Abby on his lap, and this is the most peace and quiet we have had all day. With that being said he is now screaming for chocolate milk. Well hopefully the steriods will leave his system as quickly as they entered, and we can go back to being normal until next month. Have a good night!!!
October 18, 2007
Things around here have been getting a little better. Luke's attitude, well lets say is still in rare form. He has'nt been himself since last Wednesday when he had his chemo. He 's been waking up in the middle of the night, just crying for no reason. When I think of all the medication he has in him, I start to feel nausea. This really stinks, three years of all this is just not fair. Lately I keep thinking of a conversation I had with someone which whom I knew, and she kept referring to Luke's cancer as the good cancer, well there is NO GOOD CANCER.
We will be leaving for Vermont today, Luke is very excited. Our last visit was at Christmas time. Wow it's been 10 months since the last time we were there. Time goes by so fast, although the last 7 months seems like forvever. We hope to have a great weekend with the kids. Luke really deserves some fun. Have a good day!!!!!!
October 22, 2007
Hi All,
Luke had a great weekend in Vermont. We left for our home in Stratton VT on Thursday and just arrived home a little while ago. Luke spent most of his time running in the yard with Eddie, Sarah, Coco, Bocce and Abby during the day, and sitting by the campfire telling ghost stories at and collecting firewood at night. Although the medication doesn’t slow him down, it seems to be taking a toll on his nerves. He has a hard time relaxing, sleeping and seems on edge lately. We have to visit the Valerie Center on Wednesday and we will mention this to the doctor. He is now with Aunt Michele and Uncle Glen for a little while. He couldn’t wait to get home and see them. Have a great night! ED
October 24, 2007
Luke's hospital visit went well this afternoon. The usual happened, several bath room trips due to his nerves. His counts are lower than last visit, which means no change in his medication for now. We think Luke has developed a crush on nurse kelly, he seems to get a little silly around her. He has been sleeping better at night thanks to some Ativan (valium). For now he is watching a new Transformer movie. Could he possibly be moving on to something other then the Power Rangers! Have a great night!!!!
October 26, 2007
Well today is certainly a yucky day. Although Luke thinks it's still summer, this morning he came down in a bathing suit. He makes us laugh. Luke has been feeling really well, taking all his medicine like a champ. I can't believe it was 7 months on the 21st that we heard of his horrible diagnose. Wow, it seems like forever. We are looking forward to seeing everyone at the November 2nd event. By the way the event is sold out with 700 people. It is going to be a great evening. Congratulations to the committee for there sell out!!!!
October 28, 2007
Luke continues to feel well. So far so good with all his oral medication. He is not due for chemo until November 7th. We are enjoying our bi-weekly visits to the Valerie much better than what our past weekly visits. Sure is better then the summer was. Today we went to MMC for the Valerie Fund's Halloween party which was hosted by Tim Mcloones band The Holiday Express. Once again Sarah was up singing with the band. She is such a little ham. They do a such great job with contests, games and prizes and all the kids had a ball. Luke had so much fun dancing with his nurses while Eddie guessed that there were 742 bottle caps in a big container. Not only was he the closest, he guessed the exact number. Pretty cool!
Luke is now running around the house in a leather cap, leather vest, no shirt and a whip. someone (who will remain nameless) gave him this costume last night. Jeanine and I kidded about bringing him to the party in this getup. The funny thing is, he would of worn it without hesitation. He is always trying so hard to make us laugh and always succeeds. Have a great night. Thanks for your prayers. ED
Luke and Tilly the dog
Luke singing with Susan and Sarah singing backup.
October 29, 2007
FYI....The picture above of Sarah is in todays Asbury Park Press. There is such a nice article about the Valerie Fund and the Halloween party.......She is such a ham!!!!!
October 31st 2007 Happy Halloween
Luke had a lot of fun today. He awoke smiling and talking about trick or treating. He picked one of his three costumes to wear and he was ready to go. At 1:30 Chad and Luke went to Bayview School to see the Halloween parade. Luke told me that there was neat costume’s.
I made it home a little before five and went out for an hour or so with Sarah, Luke and Jeanine ,while Eddie went around with his friends. Luke picks and chooses what houses to go to. Weird if you ask me, but he only goes up to houses he wants and skips over others. He loved going up to the “SCARY” house around the corner. The whole house is decorated with monsters and gravestones. He went right up the porch and talked with the lady in the chair. I guess with all he has been through, some scary lady in a chair surrounded by monsters is nothing to him.
I than took Luke and Sarah to Grandma and Grandpa’s for a little witches brew (stew) and apple dunking with their cousins Colin and Nolin. They had a great time. We just finished our annual pumpkin carving and are hoping they are all nice and tired and sleep through the night. It has been a busy few hours, but a great start to the beginning of the holiday season. Have a great night! ED
November 1, 2007
Tonight as I was giving Luke his 8 pills of chemo he asked me in Luke's language "why I have to have kemia?? I told him just take your medicine and soon you won't have it anymore. He then asked if in the morning it would all be gone. I told him in a couple more years.
If only things could go Luke's way, This whole "kemia thing" would all be over in the morning....
Have a great night and thanks for your prayers!
November 4, 2007
Hi All,
What an amazing weekend we had. First of all, Luke is doing fine and full of energy. Sometimes a little to much energy if you know what I mean. Friday night we attended the Hope for Children 3rd Annual Gala in honor of our son Luke. I would like to start by thanking the my sister Marybeth, Eric and Karen Hinds, and the committee from the bottom of my heart for all that you have done for our Luke, as well as all of the other children who will be treated at Monmouth Medical Center. Your hard work and dedication to this year’s event will impact children’s lives for years to come. Words cannot express how much honoring our son, has meant to me and my family. You are an amazing group of people and I am honored to have you all as friends.
Thank you to all attendees and donors for your support with this wonderful evening, and what an evening it was. “The Best” charity event of the year. For those of you who took pictures, can you please forward them to Eddiewalz@aol.com and I would like to post them on the updated event page. Thanks again for everything and have a great night!
Ed
November 5, 2007
Just a quick update, I have to agree with Ed, Friday was the best charity event ever. We all had so much fun and look forward to next year. We just came home from Dr. Gawler's office, Eddie and Sarah just had their flu shots. I did get a very overwhelming feeling come over me walking into his office, since the last time I was there Luke was a very sick little boy. Wednesday we will be up at the Valerie for a chemo push in Luke's port. This means a lot of stress and anxiety for Luke....have a great night! Jeanine
November 7, 2007
So today was a family affair at the Valerie Fund. All was in attendance for Luke's chemo (excluding Chad). We had the usual bathroom episodes, at least 5 of them. In the end, Luke got the job done and all went well. His counts were where we want them and today he starts steroids for the next five days. This dosage usually screws him up for about two weeks. Today Jeanine took the kids for their annual Christmas pictures. While waiting for the pictures, a lady approached Jeanine and said "I know your one son has a Mohawk, but what do you call his haircut as she pointed to Luke ." Jeanine said "Chemo" and the lady cringed. The lady then told Jeanine and the kids that her husband’s brother died of Leukemia at three. Nice ha, are people really that stupid or just that ignorant. Have a great night!
ED
November 8, 2007
Unfortunatly Luke's chemo (vincristine) from yesterday has kicked in along with the steroids. He woke this morning in a very bad mood. He really is just not feeling well. Tonight was his big night for oral chemo 8 pills total, I can't imagine how all this must make him feel. He gets very emotional and restless and nothing makes him happy. Hopefully some valium will do the trick and take the edge off.
November 10, 200
Luke has been feeling much better then he was on Thursday and Friday, although he is still a little grumpy from the steroids. The effects from the Vincristine (chemo) must be wearing off. We are now getting ready to watch Spiderman 3 for the 30th time this week. I now can recite the whole movie!!!! Have a great weekend.
November 13th 2007
Well its official, Power Rangers has officially taken a backseat to Spiderman. Luke has both the good and bad (black and red) Spiderman costume. I think he loves terrorizing as black spidey more than helping with his red Spidey costume. He actually has a little case that he keeps all of his stuff in and has been carrying it around since I came home.
Today Luke got sick three times. This is probably from all of the Chemo he received on Wednesday, as well as the oral dose he receives every day. This doesn’t slow him down. He is now lifting toy weights to get stronger “so he says”.
Jeanine and I truly appreciate all of the love, prayers and support that we have received since Luke was diagnosed. It is been a tough eight months and your support has been amazing. Thank you all. Have a great night. Ed
